Request for Public Comments on Co-Occurring Conditions in Autism

Responses to Question 5

Question: What could be improved in autism services and supports to help address co-occurring conditions for autistic people? (Examples: Equitable access to and accessibility of services, insurance coverage, service systems issues, patient-provider interactions)

Name	A.S.
Demographic	Autistic individual; Family member of an autistic individual
Response	Actual equitable treatment. Supports that aren't conditional on us being perfect with being on time and filling out dozens of forms. Supports that don't restrict our lives or strip us of any autonomy whatsoever. I'm radical enough that I want this for all disabled people. Nobody should have their right to make decisions about their lives stripped away from them just to receive help. For those whose disabilities make decisions challenging, I think guided decision making is an equitable and compassionate middle ground so the person still retains autonomy and gets to have a full range of human experiences. Basically disabled people are treated as subhuman and deprived of life experiences because it's thought that we "can't handle it" and that's just gross.
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Name	Aaron
Demographic	Autistic individual
Response	Making disability services more accessible to autistic people who are able to maintain a job. Just because we can, doesn’t mean we aren’t struggling daily with maintaining other aspects of our lives as well as masking our symptoms in order to stay employed. My disability is debilitating when I put all of my effort into masking at work or in public, and I get home unable to do chores or basic tasks to care for myself being burnt out.
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Name	Abby Schindler, Institute on Disability and Human Development
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Services and supports for late-diagnosed autistic adults which are covered by insurance plans.
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Name	Abi
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance for sensory needs would be huge. I am fortunate enough to afford high quality headphones that don't press on my skull and even play music so I can regulate my emotions. But there are a lot of people in America who can't even afford adequate food. Additionally, education for parents and children would help so many autistic people grow up without the same alienation issues I struggled with. My parents were always worried that my brother and I would be bullied by other kids who didn't know about autism. I have a very vivid memory of my brother being scolded for flapping his hands. I tried to be a chameleon when I was younger. To this day it is my deepest regret.
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Name	Abi Lea
Demographic	Autistic individual
Response	More financial aid to help autistic people who cannot work because of co-occurring conditions, better insurance coverage to help access the medical care that autistic people need. More access to neuro affirming therapy for autistic adults.
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Name	abirami duraiswamy
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The gap between research and practice is atleast 10 years long. We have to bridge this gap. Maternal health care is important, and should include pre-conception, pre-natal and post-pregnancy.
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Name	Adam
Demographic	Autistic individual
Response	it is very difficult for me dealing with people that are supposed to be professionals when they do not understand traits of autistic people it would be helpful if there was some sort of training that you guys could do specially around Social Security departments about autism and how to talk to them and ask them questions appropriately. I tried to apply for disability a few years ago and was unsuccessful. At that point in time I had not been legally diagnosed with autism. I am in the middle of going through the process right now and it is very difficult. I am locked out of my online. I went into the office and explained that I need help and they just keep telling me to do it online. They do not truly understand the struggles that come with autism .
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Name	Adam Wehn
Demographic	Autistic individual
Response	I have previously stated prior but more support systems that do not apply additional pressure on individuals to conform to societal expectations.
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Name	Adriene Fern
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Your panel asks how autism services could be improved to better address co-occurring conditions in this population. It must include changes and training to the social security phone and direct customer support staff. Social Security's inability to efficiently process and assist their most vulnerable consumers with consistent and knowledgeable information is deplorable. The maze of paperwork and lack of county/state sharing information creates a maze of misinformation, leaving many without funds. In April 2023, I contacted Congressman Jared Moskowitz's office for HELP! My son with autism had his benefits rescinded in February 2023. With his office's intervention, he was reinstated in July 2023. What will it take for the Social Security Administration to be able to talk to the other sub-departments of Social Security? We live in the 21st century with computers, email, and advanced technology, yet Social Security cannot streamline from one department to another. How many requests did your office and colleagues have to interfere with on behalf of your constituent's Social Security matters? Reform is required; we must do better for our most vulnerable. A broken system is no longer acceptable. Thank you for your consideration in this critical matter.
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Name	Adrienne Benjamin , Parent/Gaurdian
Demographic	Family member of an autistic individual
Response	More funding for programs, higher wages for DSP's ( Direct Support Professionals). More training for DSP's to improve services as well as to create a career path for DSP's. More training to the medical and dental providers so that they can effectively treat our population. More housing options, so people have a whole range of choices to meet their needs. Including congregate communities.
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Name	Advocates of Autism of Massachusetts
Demographic	Representative of advocacy organization
Response	Private and public insurance for children and adults should cover medically necessary treatment of autism, including treatment for behavioral conditions (e.g., aggression and self-injury); such treatments must be recognized as medically necessary under mental health parity. The number of physicians and other healthcare providers who are experienced in delivering primary and specialty care to children and adults with autism must expand to meet the needs of this ever growing population. There should be greater coordination among state agencies that fund and oversee the delivery of healthcare and long term services and supports so that co–occurring mental health concerns, in particular, can be addressed in a less difficult and more coordinated fashion. The Medicare system (not just the Medicaid system) must become familiar with and adapt to serve this growing population as the large numbers of children with autism born in the past few decades become adults and they become eligible for Medicare themselves or through their parents’ eligibility. Collectively, we must develop technologies, instruments, and techniques to allow people with autism to better access primary care and preventative screenings, as well improve the diagnosis and treatment of chronic and serious co-occurring conditions.
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Name	Aidan
Demographic	Autistic individual; Family member of an autistic individual
Response	All insurance should cover therapy, simply put,but accessibility is also a big issue. Public knowledge of co-occuring conditions is next to non-existent, and many providers brush off concerns of these issues.
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Name	Aimee Doyle, Autism Mom/Disability Attorney
Demographic	Family member of an autistic individual
Response	Insurance could and should cover more autism treatment. We have spent hundreds of thousands of dollars on both conventional and alternative therapies for my son, without that much in the way of results. We have tried EVERYTHING. And almost none of it was covered by insurance. Insurance companies rarely cover even standard helpful therapies like speech therapy or occupational therapy and never cover newer therapies like biomedical intervention, sensory-integration therapy, vision therapy, or auditory integration therapy. There really hasn't been a new, effective treatment or therapy for over 15 years. And there is very little research on effective treatment for those who suffer from severe autism. There is little research on effective treatment for the co-morbidities of autism. Doctors don't seem to want to deal with either autism, or the co-morbidities.
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Name	Aimee Mingone, Teacher
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Insurance coverage for diagnosis, autism support animals for adults, and workplace acceptance of accommodations.
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Name	Akash Dey, ASD level 1
Demographic	Autistic individual
Response	I got diagnosed as an adult and it was extremely hard. It was a battle. I hope adults can have easier access to being diagnosed and covered by insurance. Kaiser in San Jose said they do not diagnose adults with autism and only have group therapy services for anxiety and depression. I think there is a huge lack of services for adults with autism. I had to pay out of pocket and get a diagnosis as well as help.
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Name	Alan Owen
Demographic	Autistic individual
Response	Some ability to ensure security would be a good start. I'm thinking about universal basic income, which would allow autistic people to try out different areas of employment, and to find a place that works with them. Were I to not fall into a position where I could resign from my job safely, I would have committed suicide within the next year due to my co-occurring conditions. This position was living with my brother, who doesn't charge me any bills. Now, I can focus on trying to find a job that works with me, that I feel comfortable in. Before now, I had to work to survive, and my job was what was causing the problems.
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Name	Alessandra Stark
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Insurance coverage, free and equitable access to services, more services in low income and rural areas, more communication between patient and provider, mandatory consent procedures before implementation, more schools receiving funding for ABA services/other services in schools (especially schools in low income areas), more funding for ABA centers and agencies (BCBA’s have to pay out of pocket for materials and that should not be the case, this should be funded by the ABA agency but agencies cannot afford it, therefore there needs to be more funding), free and affordable access through insurance to environmental modification at home, schools, center, etc for safety reasons and needs of that individual
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Name	Alex
Demographic	Autistic individual
Response	More leeway when it comes to the standard work schedule. An autistic person has to use 2-3x the amount of energy as a neurotypical person for the same job. We are managing our our senses while as someone without autism doesn’t have to manage that at all, nor put any brain power towards it. Insurance coverage for things to help an autistic person. Medication research to lower the sense would be phenomenal to the autistic community and individuals.
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Name	Alex
Demographic	Autistic individual
Response	Better protections from workplace discrimination, too many symptoms of Autism are considered acceptable reasons to harass or fire someone. More aide services, something as simple as a care coordinator who actually shows up had changed my life. Having access to Autism friendly instructions on paperwork as many government forms are vague and confusing for someone who needs direct instruction. Easier or permanent accesses to things like Medicaid with an increased risk of medical and mental co-morbidities many autistic people have to choose between neglecting their health and having shelter or food especially when working many days in a row or many hours can take our entire energy reserves leave us to pick between working or caring for ourselves. Overall accesses to UBI or Medicaid or assistance in having basic needs met would help austic people flourish and be able to participate more in the economy and bolster the workforce in a way that would greatly benefit our own health as well as the US
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Name	Alex
Demographic	Autistic individual
Response	One simple to implement accommodation is to allow for more Healthcare and government services to be accessed non verbally. This means via a website, app, or other written or typed medium. The main issue overall is access at all. Many Healthcare providers have very little knowledge of autism. Specialized autism care is practically nonexistent to most people. Ideally, reasonable access to diagnosis with a protocol to refer out for comorbid condition screenings would be a start.
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Name	Alex Curtis
Demographic	Autistic individual
Response	I think the ability to have access to earplugs/sound canceling headphones/quieter space options, and overall equity when accessing and using the same services as atypical people.
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Name	Alexandra Carlson
Demographic	Autistic individual
Response	Screening and recognition for autism itself. Mental health support in general. For everyone, regardless of income. Ways to connect with medical professionals that does not involve being on hold for two hours and speaking to a receptionist who cannot help you. MyChart is awesome for this - I can send an email type message directly to my doctor who can respond for non-emergencies. I have excellent insurance and live in a place where I can access good care. Many people don't. Universal healthcare, please.
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Name	Alexandra Hathaway
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Alexandra Hayman
Demographic	Autistic individual
Response	Equitable access and more services for autistic adults in all 50 states and make it easier to get SSDI, make it less difficult for renewing Link cards, decrease the wait time on the PUNS list and time waiting for funds from the state.
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Name	Alexie Herrmann
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More ABA alternatives, insurance not requiring so many prior authorizations, insurance allowing sooner refills, more Medicaid covered providers, more Medicaid waivers, creating better living spaces that are accessible, easier access aac devices, more training to SLPs on aac devices, more Neurodivergent Affirming practices and trainings for the medical field, increasing help so wait lists aren't so long, covering hippo therapy under insurance.
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Name	Alia Campagnone
Demographic	Autistic individual
Response	Provider patient interactions. Also to encourage autistic individuals to go into healthcare since a lot of the wording we use neurotypical cannot understand.
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Name	Alicia Whaling
Demographic	Autistic individual; Family member of an autistic individual
Response	Make a diagnosis accessible and affordable, widen the assistance available both physically and financially, force insurance to cover co morbidities, institute job security measures
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Name	Allison Barcott, Parent
Demographic	Family member of an autistic individual
Response	Insurance: Currently, if you have co-occurring behavioral health conditions (say ASD and anxiety,) you will need to pay from a clinician who is either "Out of Network" or out of your own pocket. The vast majority of clinicians trained in more complex conditions do not currently accept any insurance. Autistic advocacy needs to be done to push insurance agencies and clinicians to allow those with ASD to access full coverage for more highly trained personnel. Services: As I've stated earlier in this questionnaire, there is a significant lack of behavioral health clinicians trained to work with neurodiverse patients. Somehow, many professionals seem to think that those with ASD can leap the hurdles to access the therapy they are offering.
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Name	Allissa
Demographic	Autistic individual; Family member of an autistic individual
Response	having doctors who don't have a stigma against autism and will listen and hear the patient.
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Name	Allyson P., Autistic Adult
Demographic	Autistic individual
Response	Provide more support for adults on the lower needs end of the spectrum. Educate more providers on how autism presents in women and girls so that they don’t fly under the radar. Put more money towards therapy other than ABA.
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Name	Alycia Halladay, Autism Science Foundation/Alliance for the Genetic Etiologies of Neurodevelopmental Disorders and Autism
Demographic	Researcher; Representative of advocacy organization
Response	● First and most importantly, we need better training and more clinicians and educators to deliver interventions and support. There are not enough clinicians and child psychiatrists are rarely trained to work in autism. ABA therapists are not available. ER doctors are not trained to deal with psychiatric crises, they focus more on the proximal physical conditions, and have a more “treat-em and street-em” philosophy. That’s the nature of an ER. It’s not meant to be an inpatient facility and is often the last hope in critical situations. Schools should also ● Because there are so few well trained clinicians long waitlists for trained clinicians who are experienced to help families (neurologists, developmental pediatrician, GI doctors, etc.). ● Family training, support for caregivers ● Mental Health Support for families - potentially through patient advocacy groups? Increased opportunities for socialization of families who feel isolated. ● Medicaid Reevaluations for autism/genetic conditions are unnecessary. Severe IDD rarely changes after the age of 8. The money and time that is being spent on re-evaluations, what are the purpose of these re-evaluations?
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Name	Alyssa J. Pearson, New Mexico Department of Agriculture
Demographic	Autistic individual
Response	Accessibility of employment and improvements to the disability reporting services to avoid retaliation.
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Name	Alyssa Stephenson
Demographic	Autistic individual; Family member of an autistic individual
Response	Allow more options for therapy for families on medicaid that isn't aba, start allowing self diagnosed autistic people to access therapies that may help them
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Name	Amanda
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Have more coverage for assessments, as private assessments are very expensive. Supports should also be covered just like diabetes medication is, as they are both health conditions.
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Name	Amanda
Demographic	Autistic individual; Service provider, health provider, or educator
Response	It is almost impossible for anyone over 18 to get a thorough assessment and diagnosis of autism in the state of new york without paying exorbitant prices out of pocket (over $6000 in general). When I was in graduate school, the only training available was ABA style therapy which I feel is inappropriate, and neurotypical providers are at a loss as to how to help their patients.
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Name	Amanda Halloran
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization; Other
Response	In the state of SC, there is no safe place for the mental health treatment for those with co-occurring disorders, most especially autism. Patients in search of help from state agencies are tossed from agency to agency as no one agency wants to take responsibility for them. In addition. SC does not have Medicaid expansion so access to proper treatment is decreased for the entire community.
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Name	Amanda Kulesza
Demographic	Autistic individual
Response	Insurance coverage for testing, service systems issues, and patient-provider interactions
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Name	Amanda McCray, Autistic mom raising autistic kids
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Better trauma responses by the mental health community. ABA needs to go. We need to teach people with autisim how to be themselves within society and not try to fit into a society that is not accepting. There needs to be evidence based therapy that teaches coping mechanisms to deal with the social backlash from society. Until society changes.
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Name	Amanda Saffell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	See all previous responses. The best way to help autistic people is to create a society that cares more about people than money. Healthcare, free education, and more services will do nothing if we continue to be forced to pay taxes to fund wars, it means nothing if we don’t have good healthcare, infrastructure, or education (see our laughable world rankings), it means nothing if your social services do not operate well (SSI, SSDI, DHS), it means nothing without the prerequisite of a well functioning society. You can put glitter on a pile of [profanity redacted] but it’s still a pile of [profanity redacted]. When the [profanity redacted] decomposes it creates a beautiful flower though, isn’t that funny?
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Name	Amber Robertson
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Literally every aspect of autism services for adults needs to be improved. My insurance didn't cover my diagnosis, and I'm still paying that off. It doesn't cover diagnosis for a lot of co-occurring stuff, either. Healthcare is absurdly expensive, and that includes mental healthcare. Providers need to be better educated on what autism can look like, especially in women and girls, as it's often misdiagnosed or underdiagnosed in us.
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Name	Ambree
Demographic	Autistic individual; Family member of an autistic individual
Response	Some kind of money and compensation for those of us who can't do traditional jobs that pay enough for us to live. Also lowering the cost of accomodations amd diagnosises!!!
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Name	Amelia
Demographic	Autistic individual
Response	Insurance coverages need to be improved a lot. Medication is not affordable in the US whereas it is in most other major countries. Patient-provider interactions need heavier regulation. I had a psychologist tell me I was fine and had "smart people problems". I had no idea how to report him or get better quality help. Autism training should be given to all practitioners and not just ABA. Recognition in classrooms needs to be improved. If I was diagnosed sooner, I may have had access to more supports. I don't even know what options I have and since I was diagnosed so late and have to survive on my income, I can't get on disability or any services because if I quit I will be homeless and I have no family or friends. I feel like I will never get healthy here. More publications and early intervention will help people like me from becoming people like me.
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Name	Amelia Cruz
Demographic	Autistic individual
Response	Most of my concerns when it comes to this issue are more widely applicable than just to autistic people. For example, I believe the American healthcare system needs a massive overhaul from just about every aspect possible. Insurance companies are greedy scalpers, medical professionals are either not given the time or are not interested in working with patients as individuals, and trained providers are few and far between in certain areas of the country. Fixing these things would be great for autistic and allistic people alike. For autistic people specifically, my concerns lie primarily with inclusive access to housing, education, and employment. The US tends to segregate autistic people from the general population - think of special ed classes, isolated housing institutions, the fact that most public spaces are not autism-friendly. Part of the stigma around autism comes from the fact that most allistic people have not met an autistic person. Their only frame of reference is Rain Man or The Good Doctor. So, while money should go to more accessible services for autistic people, I think it's equally important to find ways to provide these services without separating autistic people from everyone else. Allistic people have a lot to learn from autistic people; Finding ways to better incorporate autistic kids into the classroom, autistic adults into community spaces and neighborhoods, and all disabled people into public spaces might be a good start.
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Name	American Academy of Pediatrics, American Academy of Pediatrics
Demographic	Representative of advocacy organization
Response	Autistic people often receive late evaluations and interventions, resulting in poorer health outcomes. This inequity is caused by access issues, ableism, and bias in the healthcare system, which exacerbates challenges related to co-occurring conditions, deficits in communication, and differences in expressions of pain or other sensations. Autistic people need access to the same level of preventive services such as well visits and dental visits as everyone else in the United States. This requires a trained workforce that understands the IDD/ASD population and inclusive practices within therapy, medical care, mental health care, and dental care. Health care providers need better education on neurodiversity and ableism, and better support on how to help families navigate complex systems. Additionally, to achieve this, payer reform and differential payment structures are needed to allow for payment of support services so that people with IDD/ASD experience equitable care. Because it takes more time to modify clinical practices and procedures to include people with IDD/ASD, payers need to recognize this and allow for a modifier to be applied to serve this population equitably. Many healthcare systems are eliminating extended visit times in primary care, but even for providers who are allowed to give extended time for complex visits, knowing how to bill appropriately for their time is a complex skill and as a result, many end up not being compensated for the extended time.
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Name	American Association of Psychiatric Pharmcists, American Association of Psychiatric Pharmacists (AAPP)
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	With a national average of only 14 child and adolescent psychiatrists per 100,000 children and ~800 board certified developmental-behavioral pediatricians in the U.S. for the 19 million children with developmental differences, addressing the increasing mental health and complex psychotropic medication needs of this population is difficult. While Innovative services have been created, they need to be expanded (PMID: 34210189). AAPP advocates for the inclusion of BCPPs in interprofessional teams that care for individuals with ASD to support these demands. Examples of services that BCPPs can collaboratively support include: 1) Care coordination/delivery: support transitions of care, coordinate care among service providers (e.g., school, community supports, ABA therapist), provide medication education, ensure timely access to medications (DOI: 10.1002/jac5.1880); 2) Access to care: BCPPs can help mitigate the provider shortage through collaborative, innovative, and practical strategies to improve quality of care; 3) Evidence-based use of psychotropic medications in the setting of high rates of psychiatric and medical comorbidities, increased risk for adverse effects, and increased likelihood of being prescribed high risk psychotropic medication regimens (e.g., more than three medications). Specific strategies can include psychotropic stewardship and comprehensive medication management (DOI: 10.1002/jac5.1880, PMID: 37063939).
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Name	Amy
Demographic	Autistic individual; Family member of an autistic individual
Response	Access to services for Autistic adults, we don't grow out of Autism and adults with Autism need support services too
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Name	Amy Acevedo, Mother
Demographic	Family member of an autistic individual
Response	public school knowledge, acceptance, and recognition
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Name	Amy Cox
Demographic	Autistic individual
Response	There are hardly ANY practitioners who work with autistic adults, and Medicare doesn't cover much if any of the care. And most know nothing about autism and related issues. More informed doctors, insurance coverage by Medicare, MUCH more help for adults, including people over 50.
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Name	Amy Fowler
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More of them and available during a variety times.
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Name	Ana Pereira, Mother of an amazing autistic boy
Demographic	Family member of an autistic individual
Response	Medicaid should be allowed to be a secondary insurance coverage. Financial thresh holds should be increased. (personal example: my husband are in the middle class financially, due to the increase of prices in the recent economy we are not poor but also not rich. My primary insurance covers some of the therapies he needs with daily co-payments. there are other things that we need to provide for him but we cant add any more to our plate. we have not had the ability to vacation in years because we use all of our extra for his care. Diapering, speech and OT therapies, sensory items for home, however the fear of losing my job and not having insurance anymore at least for him to continue to cover his therapies is a very real and scary thought. We are having extreme issues getting Medicaid for the disabled to even approve coverage for him at any level. I am not looking for "free" I am looking for affordable. Someone to work with us. There are so many other things he will need as he gets older and I am not sure how we will be able to provide them for him. It was also very hard to get him diagnosed and for someone to follow his care. i was on a wait list for over 8 months and had to drive 1.5 hours to a hospital that provided this service.
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Name	Ananya Rishi
Demographic	Autistic individual; Service provider, health provider, or educator
Response	- Insurance coverage. - Access to specialised neurodivergent health-care providers. - Removing disability-related discrimination.
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Name	Andie
Demographic	Autistic individual
Response	Greater access to services, and greater education and awareness of support services is needed. As an autistic person it is difficult to grasp where to start to begin searching for resources that could assist me. I, personally, could benefit from more accessible and sensory friendly spaces and clear, direct instruction in daily life and tasks and know that many other autistic people struggle similarly with feeling as if we were not given the instruction manuel for everything from social interaction to paying bills and doing taxes and this makes initiating such tasks very difficult. Greater insurance coverage is an absolute must, as well. Many autistic people, myself included, have to incredibly high prices out of pocket just to get a diagnosis, making it completely inaccessible to many. In addition, insurance coverage for support and services such as various forms of therapy and training should exist.
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Name	Andrea Barlass
Demographic	Service provider, health provider, or educator
Response	Access to services Affordability of services Public education/awareness of services available Providers educating caregivers and assisting with referral process or referring to a care coordinator who can assist caregivers who may not have as much health literacy as others. Insurance coverage abd removal of prior authorization for services. School assistance in educating parents (if there is a trained, licensed mental health clinician available). Normalizing utilization of asking for help and use of community resources.
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Name	Andrea Dahlberg
Demographic	Family member of an autistic individual
Response	It would be great to get autism services and supports. Could I get help finding a psychologist that understands autism and also have them to insurance. And I’m not talking crappy insurance, I have Cigna. Get my dental plan to cover nitrous so she can get dental work comfortably.
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Name	Andrea Davis, Ph.D., DIR/Floortime Coalition of California
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
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Name	Andrea Hammond
Demographic	Autistic individual
Response	My greatest struggles is finding support as an adult. Everything is geared towards children or the family of autistic individuals. Therapy is so inaccessible to me yet is something I desperately need. I haven't found a doctor who understands autism beyond stereotypes. When looking into services that might be of help to me a lot of them were inaccessible, they didn't have options like online applications. A lot of them needed phone calls or in person visits. Both of which are a huge struggle for me but also for those who are Non Verbal and the stigma we all face but especially for those with higher support needs. Autistic adults could really use more support as we are often forgotten about once we are no longer children even though we are still autistic.
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Name	Andrea Webber, Mom
Demographic	Family member of an autistic individual
Response	Housing and different supports. The people on the spectrum that I know of don’t do well in a group home or with others, granted that’s only the few I know. I don’t know if anyone knows what they need. I think program/housing using Jespy House as a prototype but with changes would be a good start. There is also Mt. Bethel in Warren NJ which was originally supposed to be for people that were intellectually high functioning but socially and most every other way low functioning. From what I understand as one of the original founders said they could not find enough people to fill the Mt. Bethel so it was opened for ID people.
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Name	Andrew James Sanchez , Social Optics
Demographic	Autistic individual
Response	The biggest would be access to housing, housing that is supportive without feeling like a prison. Housing that doesn't assume that all autistic people have the same support needs which doesn't have a curfew but supports are readily available should we call and need them. The other is access to mental health services that are trauma-informed and seek to help rather than punish. An autistic meltdown is not a crime, and autistic shutdown is not a moral failing. When we do not address these issues we fail not only autistic people but society as a whole.
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Name	Andrew, Spouse of person with autism
Demographic	Family member of an autistic individual
Response	I am unsure just yet as her diagnosis was recent.
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Name	Andy
Demographic	Autistic individual; Family member of an autistic individual
Response	Where do I even begin? First off, getting evaluated is not feasible for the majority of Americans since it costs anywhere from $2,000-$6,000, and there is usually an extensive wait list. The first goal should be to make an autism evaluation more accessible for EVERYONE. Insurance usually does not cover an evaluation, and the clinics that do the evaluations usually don't take insurance. We need to make EVERY insurance plan cover an Autism evaluation since so many idiots want to argue that self-diagnosis isn't valid when it ABSOLUTELY is. Also, the actual evaluation criteria should be developed by Autistic Neuropsyhcohologists, not Neurotypical people, like hello? Who is going to be able to accurately identify Autistic folks better than Autistic folks? Also, accommodations on the job are basically non-existent. We need to promote the normalization of disabled people using accommodations. I have had jobs in the past where customers clearly mistreated me (while I was wearing a pin which disclosed that I'm Autistic), but I couldn't stand up for myself because I know that management would NOT have supported me. A lot of us feel pressured to work without accommodations because we have been made to feel like a burden in the past. We also need to have more services that help us get hired. MANY interviewers have rejected me purely because I seem "awkward" in their opinion. Keep in mind, I'm talking about places like gas stations and Taco Bell, not fancy office positions.
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Name	Andy Shih, Autism Speaks
Demographic	Representative of advocacy organization
Response	Improving services and supports for co-occurring conditions in autism will require capacity development across all specialist levels, from peer supports to highly specialized professionals. Increased reimbursement for primary care providers and specialists caring for autistic individuals may allow for greater accommodations and increased staffing in these fields. The priority should be to improve access to qualified healthcare providers who feel comfortable treating co-occurring ASD and mental and physical health conditions. A multi-disciplinary approach to care where healthcare professionals coordinate with one another to support an autistic person’s needs is also essential, particularly in complex cases. Many autistic people wait for years on waitlists to access care, so expanding insurance coverage to include group interventions would greatly increase access to care and support services. Expanding access to community integration opportunities can also enhance the overall well-being and quality of life for autistic individuals. To accomplish this, it’s necessary to increase staffing for respite care providers, adult care programs and other supports, and improve training for these service providers.
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Name	Angela Close, Parent of adult with ASD
Demographic	Family member of an autistic individual
Response	Transportation to access services. Many adults with ASD do not drive and public transportation is limiting. It limits their availability to health care, counseling, social programs and employment. Too many unemployed or underemployed!
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Name	Angela Hilbert
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Do people with ADHD really have to see their doctor monthly for a non-renuable prescription of basic ADHD medicaion? I live in a rural area and have a 56 minute drive to my psychiatrist's office. I miss half a day of work every month for this. I use up all my PTO just to keep medicated and in command of my own executive functioning. If I have to miss that appointment for an important work issue, I don't get my meds and have to work scattered. It reflects on my job performance and how I am judged and evaluated. If I use up all my PTO just managing my basic medication requirements, I don't have any for "mental health days", or a vacation to recover from chronic overstimulation and masking. This leads to burn out and job loss. I can't win. If I opt for using FMLA I have to disclose my Autism which can be career suicide. Even in a place where that would be safe, I would still have to take half-day without pay every month to use FMLA. It puts people with Anxiety and ADHD in an impossible situation.
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Name	Angela, Autism caused from brain damage at birth.
Demographic	Autistic individual
Response
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Name	Angeline Low, Apt Fitness, Inc.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Access to autism related services. I founded Apt Fitness, Inc., to help disadvantaged individuals affected by autism and ADHD, so they could afford to learn coping strategies, fitness, and social skills. We need more focus on nonprofit organizations such as Apt Fitness, Inc., which provides outreach support and services. When people are diagnosed late, they have missed a majority of their lives, where they kept thinking they were the problem, that something was wrong with them, when they were only autistic and needed to be shown coping strategies.
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Name	Angie Gorz
Demographic	Autistic individual; Family member of an autistic individual
Response	Equitable access to mental health counseling for everyone, training in med to avoid patients being treated poorly, equitable access to all care, access to leisure activities to those who have co-occurring diagnoses, and more.
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Name	Ann
Demographic	Autistic individual; Family member of an autistic individual
Response	Diagnosis availability for adults. many of us were overlooked as children.
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Name	Ann Glynn
Demographic	Family member of an autistic individual
Response	Now having an adult child with autism there needs to be life long support available for these individuals. Many if not all the services in most areas drop off when the person ages out at 21 or 22. Many will still need support for the remainder of their life. While they may not be able to go on to work they can lead a very full life with the right services in place for them to continue to teach them life skills and coping skills. Many family members need this to be available as it is devasting when there child ages out to go from a very detailed, routine schedule to days filled with nothing. There also needs to be more training and guidance for parents & caregivers.
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Name	Ann Titus
Demographic	Family member of an autistic individual
Response	Most providers are unaware of Pathological Demand Avoidance and therefore give poor advice. Therapies can be counter-productive. Also, if a child is diagnosed with autism, he/she/they should automatically be offered an Individual Education Plan. There should be no question or assertion that a child doesn't have "educational autism." Schools should be resourced adequately, so that they don't reserve IEPs for the toughest cases only.
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Name	Ann, Parent
Demographic	Family member of an autistic individual
Response	Liaisons in emergency rooms to help parents overcome the implicit biases by doctors in understanding autism. Appropriate long-term housing for people with severe autism who are unable to communicate and left isolated and defenseless to protect themselves against abusive staff. Until appropriate housing is available people with severe autism need video monitoring for protection.
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Name	Anne Cuvellier, MSW
Demographic	Service provider, health provider, or educator
Response	funding Adult services is essential to improving the quality of life for persons diagnosed with autism. researching and developing specialized models for treating individuals with Autism to help address their mental health issues without solely relying on medication to manage mental health. providers should be required to have a specific certification in working with persons with Autism because as someone who has been practicing in the field for years, there are many unqualified providers out there and agencies who send them out. Insurance is good to my client base.
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Name	Anne Marie Price
Demographic	Autistic individual
Response	Late diagnosis therapists and doctors who understand the difference in women autists and men. Insurance coverage. ADULT ANYTHING SERVICES.
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Name	Anne Nagel
Demographic	Autistic individual
Response
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Name	Annettr
Demographic	Family member of an autistic individual
Response	Service accessibility, more services and teacher eduction in the school setting,
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Name	Anonymous, public schools
Demographic	Service provider, health provider, or educator
Response	Community Education
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Name	Anthony
Demographic	Autistic individual
Response
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Name	Arianna C
Demographic	Autistic individual
Response	Make more of them
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Name	Ariel Taylor
Demographic	Family member of an autistic individual
Response	Providers who take a neurodivergent acceptance approach to treatment instead of a medical model. Providers who accept Medicaid. Providers who are specifically trained in the most recent modalities for autism and not just ABA
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Name	Arushie Nugapitiya
Demographic	Other
Response	The issue is not so much co-occuring conditions that you list it is the coexisting conditions (lack of a better term) like DD and mental health that creat a disparity for the DD population to receive Mental Health services that create barriers
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Name	Ash Keen
Demographic	Autistic individual
Response	Providers need more training on how to interact with autistic individuals. Autistic patients could benefit from a social worker or other support person to help them navigate the healthcare system
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Name	Ashleigh
Demographic	Autistic individual
Response
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Name	Ashley
Demographic	Family member of an autistic individual
Response	Not having to.fight insurance for therapies, cutting down on the 15 yr wait list for ssi
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Name	Ashley Bayles, Autistic Person
Demographic	Autistic individual
Response	Provider education that humanizes autistic people and the cessation of attempts to eradicate natural autistic behaviors/ways of being.
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Name	Ashley Daly
Demographic	Family member of an autistic individual
Response	Training and information for parents. More knowledge and training for pediatricians on what doctors to refer out to. Providers who take insurance and do the breadth of neurodivergence testing - dyslexia, speech, adhd, etc - we paid out of pocket for a full evaluation.
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Name	Audra Olazabal
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	All of the above. Training for first responders, support workers and families. Mental health and community building resources.
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Name	Audrey
Demographic	Autistic individual
Response
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Name	Aurora
Demographic	Autistic individual; Family member of an autistic individual
Response	Many autistic people are not diagnosed with autism because of the many barriers involved in seeking healthcare, finding a care provider willing to diagnose you, autistic tests often being made for children, or made without masking in consideration. Adult autism needs more attention, especially services designed to help adults with autism navigate the complicated healthcare system and get diagnosed with autism, and if needed apply for disability services.
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Name	Autism high functioning, with Heds
Demographic	Autistic individual
Response	Having it de stigmatized so that austic can feel comfortable getting help with mental difficulties and health issues, without being dismissed by medical professionals.
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Name	Autism New Jersey
Demographic	Representative of advocacy organization
Response	First, effective medical care for autistic patients can be improved by requiring formal education and training for healthcare providers on the complex presentation of autism in their patients and the most common co-occurring medical conditions. Healthcare providers who are well-versed in autism-friendly practices will provide better care resulting in better health outcomes. Also, systemic changes in healthcare administration and third-party payor policies can result in improved care and outcomes. Providing adequate funding for hospitals and other medical providers to implement autism-friendly practices would incentivize healthcare organizations to take on these efforts. Changes to reimbursement rates and billing codes could allow for longer medical appointments for autistic patients, more case collaboration among professionals, and billing by behavior analysts in medical settings. When any of these things are piloted as quality improvement projects or via grant money, they show positive results (Boston Medical Center (n.d.) Autism-friendly initiative); the ability to expand and sustain these efforts can improve the health, safety, and quality of life for the autism community.
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Name	Autism Society of Idaho
Demographic	Family member of an autistic individual
Response	Workplaces should accommodate neuro-divergent individuals
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Name	Autistic Adult and Autism Researcher
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Providers should be trained in the care of autistic people and should understand the heterogeneity of the autism spectrum. As an autistic adult, I have had my autism needs dismissed in the medical setting when a doctor who is treating another one of my conditions does not "see" me as autistic because I am a high-masking, intelligent adult with low support needs, but needs nonetheless. Services for co-occuring conditions should be made more financially accessible for autistic people, especially regarding insurance coverage. It has been difficult for me to access services because my psychologist specializing in both autism and ADHD in adults is not in-network despite this psychologist being the only neurodiversity-affirming adult specialist in my area. It would be very helpful to have access to food and item delivery services without paying an added cost, as co-occurring disabilities like ADHD and eating disorders can make the process of shopping in-person very difficult.
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Name	Ava
Demographic	Autistic individual
Response	Absolutely insurance coverage, but also more training in Med school. So many “experts” don’t know what high masking autism looks like, especially in those assigned female at birth. racial minorities deal with the impacts most
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Name	Azure
Demographic	Autistic individual
Response	I have a horribly difficult time with paperwork that often leads to difficulties in my life. A service where an aid helps walk me through the process would be incredibly helpful for me.
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Name	B
Demographic	Autistic individual
Response	Testing that doesn't rely on childhood things, especially for those seeking a diagnosis as an adult. Less hoops to jump through to get coverage. More health insurance options that don't have us paying out of pocket for testing or support because we're not children. More training for the in authoritarian positions like doctors and nurses and psychologists on how to interact with us and mandatory reading of the internal DSM and US DSM latest copies.
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Name	B. Blair Braden, Arizona State University
Demographic	Researcher
Response	More funding for large-scale clinical trials. There are a plethora of pilot studies that show promising effects for addressing co-occurring issues, especially in autistic adults. But there is very little funding to execute large-scale clinical trials that can establish efficacy and move these interventions into services.
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Name	Barbara Baker, parent
Demographic	Family member of an autistic individual
Response	For many of the biomedical interventions we have had success with, they are not covered by insurance because they are deemed "exploratory". I would like to see more insurance companies recognizing that all care for complicated individuals with autism is worthy of coverage. Especially since no one knows for sure what works for this population. It's truly all still trial and error. So do not dismiss possible treatments as not worthy of insurance. Also, more practitioners need to be trained to care for people with autism. There are not enough and there is a great need for them for the future.
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Name	BAT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	More access to augmentative and assistive technology (especially communication), neurodiversity affirming therapists, insurance coverage (more than just ABA), more clinician education on co-occurring conditions.
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Name	Beatrice Alvarez , Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Insurance coverage of mental health therapies
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Name	Bella
Demographic	Autistic individual
Response	All of the above
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Name	Bella Taylor
Demographic	Service provider, health provider, or educator
Response
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Name	Bellamy
Demographic	Autistic individual
Response	Medical staff should be trained to slow down and explain what needs to be done and leave room for questions and accommodations. Hospitals are quite traumatizing for me and I think it wouldn't take alot for them to be a whole lot better for folks with autism. Many autistic people can't drive, me included. We should have transportation avilable for those who can't drive themselves. (I cannot ride the bus alone because when I disassociate and hallucinate I become incapable of recognizing where I am in the world and how to keep myself safe in public.
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Name	Ben Yerys, Children's Hospital of Philadelphia
Demographic	Service provider, health provider, or educator; Researcher
Response	-Equitable access to psychiatric medication, particularly for adults -Enhance autism services (Medicaid Waivers, vocational rehab) by providing support for mental health accommodations in addition to physical health accommodations -Identify opportunities to enhance research on self-advocacy/self-determination among autistic people of all ages, so they can advocate for their mental health needs.
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Name	Berkeley Fisher
Demographic	Autistic individual
Response	Insurance coverage for the full ASD spectrum, providers (medical and mental health) get better training on ASD to combat overall ignorance, and some type of policy that builds on ADA to incorporate sensory accommodations
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Name	Bern.W
Demographic	Autistic individual
Response
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Name	Bernadette
Demographic	Family member of an autistic individual
Response	Supportive housing in or near one's community and employers that will hire and support individuals with their specific issues.
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Name	Beth Greenspan
Demographic	Autistic individual
Response	Drastic improvements in care for low income people with autism, specifically with Medicaid. I am forced to follow the cookie-cutter rules of the autism waiver I receive in order to receive services. The waiver should be flexible to allow for the widely different kinds of people on the autism spectrum. And being able to find good quality doctors in all fields who also have knowledge or training of how to treat people with autism. How to adjust to our needs. Also, much better (reliable, consistent) accessibility for people who do not drive to get to these services. And finally, better wages for providers working with autistic individuals with low incomes.
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Name	Beth Malow, Vanderbilt University Medical Center
Demographic	Service provider, health provider, or educator; Researcher
Response
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Name	Bethany Coop
Demographic	Service provider, health provider, or educator; Other
Response	We need access to services which are in alignment with best practices rather than being controlled by other variables. Wait list and the silo's covering government service providers need to be eliminated. We need cooperative treatments, where therapist, physicians, social services and educators work together to address all of the needs of the child together. One contact to help families navigate all systems and work as the go between to improve provider relations.
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Name	Betsy Pilon, Hope for HIE
Demographic	Representative of advocacy organization
Response	Go back to known etiologies and educate families early on with the prevalence and services.
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Name	Betty Lehman, Lehman Disability Planning
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Insurance and Medicaid often denies coverage for more extensive physical examinations for GI related disorders
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Name	Beverly Frost, parent, autism advocate
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Medicaid must not be the only requirement for developmental services. My son managed to have just a little too much money for developmental services. There was no way he could "lose" the income. Yet, his private income was just over Medicaid levels and certainly was not enough to provide for private services that didn't exist anyway. He could only get mental health care by providers who knew nothing about autism. A comprehensive approach was needed. Vermont and especially my rural area has no qualified autism experts in DD care or mental health.
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Name	Beyza
Demographic	Autistic individual
Response
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Name	BJohnson
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Better screening for co-occurring conditions, and then better multidisciplinary support among specialists treating patients with several co-occurring conditions. It is hard to go from specialist to specialist when they are not communicating with each other.
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Name	Blair
Demographic	Family member of an autistic individual
Response	Accessible social programs, education accomodation, in home support,
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Name	Brandi Johnson
Demographic	Family member of an autistic individual
Response	Services like ABA need to have real life environments centers plus the in home services More programs like IHSS PROTECTED CARE services so parents with autistic kids can provide care 24/7 without the stress of finding someone to watch/care for these certain kiddos
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Name	Brandy Joy Leigh
Demographic	Autistic individual; Family member of an autistic individual
Response	All of the above
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Name	Breana Turic
Demographic	Autistic individual; Family member of an autistic individual
Response	I would love to see the United States catch up with the UK for financial disability assistance for people with autism. The state of the economy necessitates a two-income household to be able to meet middle class living expenses so couples with one or more partners on the autism spectrum unable to meet the typical eight hour per day, five day per week, work schedule are under extreme financial pressure. Most workplaces are a sensory and social stimulatory disaster for people with autism leaving us a choice between masking with extreme mental and physical health consequences, or choosing alternative work from home options which are not financially stable. We need more financial assistance from our government.
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Name	Brian
Demographic	Autistic individual
Response	Stop forgetting that we grow up! When we turn 18, or 21, that doesn't mean we are magical turn into normal people. Stuff needs better access to adults too.
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Name	Brian Foti, Non-Speaking Autism Presenter
Demographic	Autistic individual
Response	Believe in us and allow our voices to be the driving voice in systemic policy. Many Autistics are misunderstood and until folks that develop policy accept us as content experts - the system will remain unsafe for all of us. We need thriving and accommodations that many general community based environments are lacking - such as more family bathrooms. Do all events really need to have the volume at a unsafe decibel? My friends and me want to be included - but we have sensory differences that can be addressed. For instance - an Autism Awareness event at a sporting event that demonstrated the sensory needs of Autistics.
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Name	Brianna Kerchner
Demographic	Family member of an autistic individual
Response	A program like California. Where it helps parents with the costs to give families more access to more/different types of therapies. To give your child the support they need we have to be a 1 adult working household. So the other parent can stay home and make sure our child gets to all of his therapies. And fights insurance on a daily basis for coverage for what a doctor has already deemed necessary. Also making it to where insurance can’t deny treatments that a doctor has deemed medically necessary.
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Name	Brichard Brummel
Demographic	Autistic individual
Response	All of the examples listed would be great. I wish there were more autistic-made resources available though and I could see more autistic providers as I feel they have a greater understanding of my condition, and I will have to explain less to be understood. Overall, however, treatment for autism is very VERY inaccessible, very costly, and incredibly skewed by neurotypical bias leading to misdiagnosis anyway. On top of those as well, there is an immense amount of stigmatization and I've recommended that many those suspecting they have autism NOT get tested due to the discrimination they can face (medical, disability in workforce, deportation from certain countries, etc.)
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Name	Brittany
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Have MH interventions be 'evidence-based' for autism, not generalized to the majority and try to force autistics in that box.
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Name	Brittany
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Literally everything. Rid all coverage/access to behavioural therapy and place that into accessibility to actual needed supports like OT/SLP for apraxia. Access to proper Autism education for caregivers (parents, guardians, families) provided BY Autistic sources to better understand. Mandatory upgraded education to any medical practitioner who support Autistic individuals.
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Name	Brittany Daniels
Demographic	None Indicated
Response
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Name	Brittany Shidham
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage for mental health support More availability of in-home services like speech and occupational therapies for children.
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Name	Brixton Moss
Demographic	Autistic individual; Other
Response	I hate that everything requires phone calls. I cannot make phone calls to access healthcare. I put this task on my partner, which I shouldn’t have to do. I know this is common among autistic people, and not just me. Services should be more accessible through apps like MyChart, texting, email, etc. Health care providers should be more aware of our comorbidities, and test for them once one thing is discovered. Most people that have the conditions I mentioned find out on their own, slowly realizing they have multiple conditions, when their doctors completely miss the signs.
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Name	Brook, No Pressure PDA
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Insurance coverage, access to disability supports, awareness in the cumulative affects in burnout and functioning, how co-occurring conditions can mask unique struggles.
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Name	Bryanna
Demographic	Autistic individual
Response	Life coaches and supported/assisted living resources and programs
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Name	Bryanna, self
Demographic	Autistic individual
Response	special education degrees being required to work with students with special needs, more insurance coverage, doctors have no idea what it means to be autistic, other forms of taking medication besides pill form or liquid form(for example Tylenol used to have a dissolvable strip that you could put under your tongue that was grape flavored), therapy being covered under medicare and medicaid, special education classes being required to be a doctor.
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Name	Caesar Âûgustus, Âûtist Advocate
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	We need trauma treatment as first approach on public services which is long lasting, multidisciplinary and performed by a team, on that matter state doesn’t pay for any longer than a couple weeks, like giving aspirins and two days license to shellshocked soldiers on the sixties all over again. Not saying fast therapy, mindfulness or cbt is not useful, it’s not useful on us, experts already on ever dissociating from overwhelming environments and body callings, we don’t need to reconnect to the environment but our own body and our subconscious crying for help through self awareness and trauma reconnection, say long term therapy from neurodiverse trauma experts, only ones with truth empathy.
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Name	Caitlin
Demographic	Autistic individual; Family member of an autistic individual
Response	The costs of services for my children are outrageous. We hit our out of pocket maximum very quickly each year. There are waiting lists for everything including financial support. We are drowning. Our children deserve better. There are no services for adults. There are waves of parents figuring out that they are autistic as they learn more about their children. There should be far more options to support us, though life and parenthood. We need more occupational therapists familiar with autism in adults. We need more support groups. We need more community support.
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Name	Calen
Demographic	Autistic individual
Response	free healthcare for everyone, increased disability awareness + acceptance, research + policy led by people with autism and supported by neurotypical people
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Name	Cali Hayes
Demographic	Family member of an autistic individual
Response	Better education and training for professionals who work with autistic people. Broader insurance coverage to access diagnosis, and more professionals able to diagnose. Currently very few places accept insurance for evaluations and many have them have multi-year wait-lists.
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Name	Cali, Worker/Student
Demographic	Autistic individual
Response	1. govt paid for therapy 2. real labor rights protections for autistic people 3. improvement of currently disability aid 4. Required in-school education about autism 5. Requiring autism informed and educated medical care.
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Name	Callista Markham
Demographic	Autistic individual
Response	Providers need to be more educated on autism in general and how to be accommodating. It would also be prudent to have better communication accommodations for anything health related like having text based options for dealing with providers. There need to be more services in general, and they need to be created with autistic people, not just allistic people and not with just one or two autistic consultants.
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Name	Candice
Demographic	Autistic individual; Family member of an autistic individual
Response	No autistic programs without autistic people being a part of the process to ensure we aren’t forcing theoretical strategies based on stereotypes. Care given to those who need it without waiting years to prove a diagnosis because insurance companies say that’s the way it has to be.
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Name	Carey Holm
Demographic	Family member of an autistic individual
Response	More providers that are educated and experienced in care of individuals effected by the most challenging co-morbidities of Autism (physicians, dentists, mental health, gastroenterologists, neuroscientists, and care providers)
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Name	Caroline Rodgerss
Demographic	Researcher
Response
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Name	Carolyn Holston , Democrat
Demographic	Service provider, health provider, or educator
Response	All of the above. There are many safeguards to eliminate fraud.
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Name	Carolyn T
Demographic	Autistic individual
Response	Autism services and supports require more experts to be able to provide proper and quality care. There should be universal healthcare for individuals with autism so that they can continue to receive care should they become unemployed, or otherwise lose coverage. Also, there should be options provided to accommodate the comfortable communication level for people on the spectrum (ex: My dealership has texting so I could ask questions and not get overwhelmed.)
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Name	Carolyn, Parent
Demographic	Family member of an autistic individual
Response	Insurance coverage for more modalities of therapy and education with the schools.
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Name	Caryn Cramer
Demographic	Family member of an autistic individual
Response	Parents of autistic children do not have a good enough financial system to help them cover the costs of therapies. we need more programs to help parents of special needs children pay for therapies. Health insurance often puts very arbitrary caps on what they will reimburse, etc. so the true cost of being a special-needs parent is very high, and there are some services that wouldn’t fall under the scope of the OT or the SLP at a school - since school services are focused on helping kids achieve in an academic setting. There are many children that need more well-rounded life skills that would come from other therapies outside of the school. it would be particularly helpful to cover DIR Floortime!!! This method has extremely good results, far outperforms ABA results, is healthier psychologically for children, and teachers children skills in a way that helps them generalize and grow
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Name	Casey Foster
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Cassandra Mccarthy, Self, diagnosed Autistic
Demographic	Autistic individual
Response	Everything. For one, it NEEDS to be made far easier to apply for and get onto SSI/SSDI when you only have developmental disabilities. It should not be the case that something like nine out of ten disability cases get turned down because judges hearing our cases think that our lack of a 'visible' disability means we are either lying, exaggerating, or faking it. More doctors, dental, and psychological/psychiatric professionals also need to receive mandatory training on how to work with autistic patients. Far, far too many professionals have dismissed me, manipulated me, or written me off the moment I told them I was disabled. Anti-discrimination protections in employment need to be more codified, too, because I'm at the point where I refuse to willingly divulge my disabled status to potential employers because I KNOW they will turn me down for a job, or fire me if I already have one. And they'll get away with it, because burden of proof is on the autistic individual, and proving discrimination in hiring/firing is nigh impossible as it is.
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Name	Cassandra Rooney
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The supports and services offered within the public school system needs major improvements for the needs of children with co-occurring conditions.
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Name	Cassandra Stanolevich, Mother of autistic child
Demographic	Family member of an autistic individual
Response	Insurance not covering aba therapy or a special bed for a child.
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Name	Catherine
Demographic	Autistic individual; Family member of an autistic individual
Response	Supports must be more readily available for lower income families
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Name	catherine martell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	medicare expanded to include dental, vision, and hearing FOR ALL.
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Name	Catherine Nimmons, Parent of a child with autism
Demographic	Family member of an autistic individual
Response	More response or awareness and more support for parents of a child with profound autism who have self injurious behavior. More support is needed for parents
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Name	Catherine Slocombe, Mother
Demographic	Family member of an autistic individual
Response	Help finding a good job should be priority. We are working with the Dept of Rehabilitation, State of Michigan. It is a joke! He completed his schooling in September and got his last Certificate he needed. This is February, and he still does not have a job. His counselor went on leave, then the next person took over. He had a few mock interviews with her, and then she went on leave. The next person took over, and all he is doing is sending him jobs that he finds on Indeed, which we could have done ourselves. The system is ridiculous! My son has been on Social Security Disability on/off for many years. He applied again, but he was denied. Then he lost his Medicare insurance. Now he has to work a part-time job he hates, just so he can have health insurance. All these people should have health insurance provided to them. They suffer every day with all these co-occurring conditions, yet they are not eligible to have Medicare. They said my son's condition has improved. He has only gotten worse. Does someone who stabbed himself sound like his condition has improved? They don't care. They only see that he has a job and can work. That's all they care about.
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Name	Catrina
Demographic	Autistic individual; Family member of an autistic individual
Response	More help for autistic adults Access to healthcare for everyone More education into autism and its co-occurring conditions to general practitioners, nurses, surgeons and doctors. We are sometimes not believed when we describe our symptoms or tell a doctor we believe we have a certain condition because they are unfamiliar with both autism and its co-occurring conditions. Autism advocacy in doctors offices and hospitals from people who are autistic or at least have an understanding of autism. More protections for autistic people. Mothers are afraid to disclose they are autistic because they don't want to risk losing their children. Autistic people are also underestimated and neglected as parents, patients, and employees.
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Name	Celestine Cookson
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Insurance coverage should be guaranteed lifelong for all which includes the following treatments: -Patient advocacy services or support workers (for making phone calls, addressing daily tasks that are especially draining for autistic people) and in help navigating anything related to the legal system, education, employment, insurance, taxes, or highly bureaucratic systems. -Access to providers who are trained appropriately in trauma informed care and working with Autistic people including Occupational Therapy, Speech Therapy, Physical Therapy, Chiropractors, Massage, Rheumatology, Geneticists, Gastroenterologists, Neurologists, Psychiatrists, Therapists. -Improve access to services that don't require phone calls, but offer texting/email options, including online scheduling, with more forgiving cancellation policies. -More options to include telehealth and inter-state access to providers as possible, especially mental health providers. -Require providers to stop providing ABA therapy. It's been shown to be harmful and have long term side effects and only encourage autistic masking. -Greater community supports for Autistic people that includes mutual aid and social supports. -Education systems and plans that have adequate providers for testing, providing appropriate accommodation and support plans in school which also factor in social supports.
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Name	Celine Fortin, The Arc of New Jersey
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	All of the above mentioned examples would be beneficial. There also needs to be increased cross training of professionals across systems as well as increased services overall.
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Name	CFT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Mandate that government services (E.G., SSA, TWC-VRS) accept diagnostic reports of ASD from LPCs, LCSWs, and other masters level clinicians, not just doctoral level, regardless of the level of clinician that made prior misdiagnosis / diagnosis disagreed with by he client). If a clinician is qualified, they're qualified, end of story. There should be access to free or affordable, insured, proximally accessible mental health, physical / medical, and specialist evaluations and prescription services for autistic and other disabled individuals due to such variable and high concurrence of conditions.
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Name	Charles Coleman, The Arc Massachusetts
Demographic	Family member of an autistic individual
Response	Equitable to and accessibility of services, for instance my daughter has been waiting for a DDS Day placement. for 3 years. We have applied numerous known DDS Day placements. Some of these placements have supposedly placed her on a waiting list or just stated that they have no opening. To my knowledge there is no criteria in place verifying if there are in fact establish lists, if there are in fact lists, are they being honor and strictly adhere to as placement positions or are people be chosen before other arbitrarily. There is no transparency and accountability in the system. MassHealth doesn't cover adults for Applied Behavior Analysis this needs to be changed immediately this a critical service that is needed. ABA is a cornerstone of success for ASD and IDD clients. etc.
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Name	Charli Barraza
Demographic	Autistic individual
Response	Equitable access to diagnostic opportunities. Increased, more readily available access to all disability support- adaptive technology, mobility aids, closed captions and auto-generated captions, public transportation services, legal support, living support, occupational and disability therapies
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Name	Charlie B
Demographic	Autistic individual
Response	Removing the marriage inequality for SSDI
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Name	Chris Bruner, Family
Demographic	Family member of an autistic individual
Response	Insurance coverage for all of the services needed would definitely be a big relief. My nephew needed braces for his feet. Insurance only covered 200 of the 1200 service. The braces will need to change as he grows and our family can’t afford the services that are needed for his success.
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Name	Chris Knobel
Demographic	Family member of an autistic individual
Response	More analysis needs to be done on the determinantal aspects of ABA on individuals with Autism with the PDA profile. Traditional autism therapy, behavior modification can cause traumatic experiences for individuals with the profile
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Name	chris patton
Demographic	Autistic individual
Response
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Name	Christi Caprara
Demographic	Autistic individual; Family member of an autistic individual
Response	Any state sponsored insurance requires a daunting amount of paperwork that those of us with adhd will often avoid. These are lifetime diagnoses. Regardless of whether we have more or less income and stability we should receive continual medical coverage. Once enrolled it should require no annual stupid human tricks to keep it. Also, meds for adhd, depression, anxiety, etc. should be free. Everybody benefits from those of us who need them taking our meds.
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Name	Christie Long
Demographic	Autistic individual; Service provider, health provider, or educator
Response	- education & research into treatment, ie., autism causing the depression/ anxiety or vice versa - continued culture/community work to build tolerance in community to consider and include individuals with autism - you cannot systematize autism; this has to be considered when building systems - screeners
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Name	Christie Patterson
Demographic	Autistic individual; Family member of an autistic individual
Response	Social safety net. It’s difficult to get diagnosed as an adult especially without health insurance. We need help accessing basic needs of survival.
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Name	Christina
Demographic	Family member of an autistic individual; Other
Response	I gave a few suggestions, see question #4. Accessibility of services is a huge obstacle for the non verbal population who must rely on their parents/guardians to find providers who have experience and can provide special accommodations. Then compound this with trying to find providers who accept the medicaid waiver. Some information to keep in mind for potential providers is wait time in the lobby, extensive waits in patient room and an office that is not autism friendly. Maybe make one day per week only for special needs patients.
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Name	Christina Stearns
Demographic	Family member of an autistic individual
Response	Patient-Provider interactions including education for medical staff who work with the public, and developmental disability liaisons in hospitals/facilities, who can assist with advocacy for individuals and their families/guardians.
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Name	Christine Buffington
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Access to services. What is offered in Pa is much greater than what is offered in Florida. There are better and more doctors in Pa than Fl. I am certain that this can be said of other states/areas as well.
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Name	Christine Conway, Parent
Demographic	Family member of an autistic individual
Response	More classes and health related workshops and specifically mental health professionals for this population to treat them appropriately to work thru issues
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Name	Christine Crum, Professionally Diagnoses with ASD Level 1
Demographic	Autistic individual
Response	Programs for autistic adults; Insurance covering THERAPY for autistic adults. I'm barely able to afford my therapy and it's the only service I can find for adults on the spectrum. Services for autistic adults, especially if they have a job and/or a family. Their families will suffer if they don't have support. Education for adults with autism about what's going on in their brain and nervous system and how to tackle day to day challenges. Continuing education about the updated information on female ASD symptoms for medical providers.
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Name	Christine Deitcher, Mother of a 9 year old boy DS-ASD
Demographic	Family member of an autistic individual
Response	Availability and reliability. We’ve been receiving services (speech, OT, and PT) since my son was only a few weeks old. He’s been receiving behavioral intervention services since he was 2, but they have never been adequate. The providers don’t last long because they’re always moving up to higher paying jobs and the one who was actually helpful didn’t last for a similar reason. I feel like it’s a constant cycle of over promising and under delivering. The provider organizations simply don’t have what they need to acquire and keep staff. It’s not surprising. These kids are some of the toughest kids to work with. My son is in 4th grade and has had the same teacher since kindergarten. She knows him better than anyone besides my immediate family and I can tell you he’s still very much a mystery to all of us. She refers to him as her “little tornado.”
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Name	christine smallin, orange county dmh
Demographic	Service provider, health provider, or educator
Response	omh and opwdd working together and not in silos; both taking responsibility instead of trying to get the other to take responsibility.
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Name	Christopher M Sculley
Demographic	Autistic individual
Response	Into adulthood a lot of us have been denied lots of things that we worked for thing’s like education and financial literacy and other services.
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Name	CJ Morefield
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Equitable/affordable access to adult autism evaluations! Adult evaluations cost thousands of dollars and are completely inaccessible to most people. Research on "the lost generation" shows that there are many undiagnosed adults who would benefit from access to services and accommodations, most of which are made up of gender, racial, and ethnic minorities as well as people of lower SES. Policies that prevent discrimination based on autism diagnoses, particularly in the military or government work. Equitable/affordable access to nervous system treatments like TMS, Safe and Sound Protocol, etc. Equitable/affordable access to trauma therapy. Secondary insurance/medicaid for disabled adults who are working without the requirement that they be on disability first.
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Name	Claire
Demographic	Autistic individual; Family member of an autistic individual
Response	Listening to those who have it. Funding diagnosis to reduce waiting lists (UK). ABOLISHING ABA
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Name	Claire Rattey
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Any service providers having knowledge of Pathological demand avoidance
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Name	Clayton Oliver
Demographic	Autistic individual
Response	Until providers are trained to recognize and interface with autistic communication styles, autism services will continue to miss the mark because neurotypical providers will force neurodivergent clients through neurotypical processes.
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Name	Cody Rabalais, Parent/Autism Society of Acadiana Board Member
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Access to Behavioral therapies in the school setting to help address behaviors that are affecting the children's ability to receive an education.
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Name	Colette
Demographic	Autistic individual
Response	We need doctors who understand autism and will listen when symptoms are given and not tell the patient that they are wrong about the symptom they are describing. The doctors are not knowledgeable that ND individuals have different symptoms than NT individuals. I have a very high tolerance for pain. I was at the emergency room as I knew something was wrong but I did not have pain. I had an inguinal hernia and 2” of my bowel had to be removed as it was incarcerated. The ER doctor did not physically exam me and finally understood that I had a hernia, etc when he took a CT scan. He told me I should have told him; I think he should haves examined me which he did not and he would have found the hernia. In 2002 I told the doctor my memory was affected and he sent me for testing. I said to him but you do not have a baseline as I knew my memory was above average. The neuropsychologist said my memory was within “normal” range, etc but likely the incorrect diagnoses of no sleep apnea and “normal” memory progressed to my current memory difficulties and I lost the enjoyment of my good memory for the past 22 years. Some of my other senses differ from NT patients and again doctors have not believed the symptoms I have given to them.
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Name	Colleen
Demographic	Family member of an autistic individual
Response	Have services that stop quitting on my son [PII redacted]. Community waver based program failed miserably, waiting lists that you will never get called. Due to transition to adult they lost my son the courts family Judge [PII redacted] uneducated about any disabilities kept asking why he was acting the way he was and then put him in secured it's been horrible...the services failed summit failed the schools failed all due to Autism and behavior due to him being raped after he was raped is when he was in trouble with the law ... NO one cares NO one so he's in jail Maximum security...I have messages he lost part of his ear was beat so bad. He now has serious issues has mental health seizures so much neglect by jail court it's unreal ... I'm so upset I have 3 kids and 4 grandkids.. pat only child/Adult with Autism !!!
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Name	colleen allen, autism alliance of michigan
Demographic	Representative of advocacy organization
Response
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Name	Colleen Floyd
Demographic	Family member of an autistic individual
Response	I made a conscious decision when my daughter was diagnosed with Autism and Schizoaffective disorder to actually say the word Schizophrenia out loud instead of whispering it -which was my initial instinct- because I wanted to in my small way attempt to break the stigma that surrounds mental illness. It was especially hard in my case because my daughter also has a low IQ so she could not articulate what she was experiencing for a couple of years, until we all understood the extent and seriousness of her condition. Once this type of thing is understood and accepted then services can offer more as needed such as specialized group homes that offer intense support. My daughter will be 21 soon so this issue is front and center for me.
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Name	concerned citizen
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Mandating that insurance companies treat autism as a mental health condition not a physical health condition. Requiring schools to take an autism diagnosis from a licensed mental health provider, not solely psychologists under reform to IDEA. Medicaid and medicare policy revisions to allow psychological testing to be performed by mental health professionals like LPC's, LMFT's, and LCSW's who undergo adequate training to administer such tests as the ADI-R, or ADOS-2. This would go a super long way in reducing waitlists to diagnosis and still retain the integrity of testing, if not improve it. Differential diagnosis practice guidance and research in this area to prevent more false positives on the ADOS-2 and ADI-R.
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Name	Connie Fitler
Demographic	Family member of an autistic individual
Response	Accessing services is the most difficult part. I am my son's advocate. If he did not have me advocating for him, he would not be able to navigate the healthcare system using insurance and making appointments and finding the correct practitioners for his issues.
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Name	Coordinated Care Alliance
Demographic	Representative of advocacy organization
Response	By increasing funding and reducing administrative costs, an enhanced Medicaid system would increase the availability of physician and specialty clinical services such as PT, OT, SLP. Currently, there is a massive discrepancy between Medicare and Medicaid in providers who accept them, same for commercial insurance.
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Name	Courtney, Parent of diagnosed child
Demographic	Family member of an autistic individual
Response	See earlier response on school-based interventions. Also, the level of training general pediatricians can't be much. I actually had a pediatrician say to me that she wasn't worried about my son's symptoms because Early Intervention was following him. I changed pediatricians. I can also confidently say that I know more about practical presentations/symptoms of ADHD and Autism than my son's current pediatrician. It's mind boggling.
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Name	Crickett Ravizee
Demographic	Family member of an autistic individual
Response	Having an autism, sensitive advocate, available and covered by insurance would be life-changing for many individuals.
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Name	Crow
Demographic	Autistic individual
Response	Accessable services (text instead of phone call, maybe), less infantalization by medical professionals. Also more financially acessable services, autistic people are significantly more likely to be unemployed
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Name	Crystal Neihart
Demographic	Family member of an autistic individual
Response	My son is attending ABA therapy. The center he goes to is not "in network" with insurance. Clinics that are in network have years long wait lists. Because of this medical will not provide transportation to and from ABA therapy. I have to leave work 2 times a day to transport him myself. I either take sick time, unpaid leave or i balance my hours ( for example; start work at 6:30, leave work from 7:30 - 8:30 to drop him off, work from 8:30 - 3:30 leave work from 3:30 - 4:30 to pick him up, work again from 3:30 - 5:30. I work 9 hour shifts so that I can have every other Monday off for speech, OT therapy, ABA therapy, and my bi-weekly meeting with ABA staff and whatever other appointments are needed for myself and family. I am not currently being reimbursed for gas or unpaid leave etc. I was denied Social Security for my son as I make too much money (I am a single mom with 3 children). I requested a MNCHOICE assessment. It took 2 months for someone to call me back to get it scheduled. The assessment was finally done in Oct. I started the process to have him SMRT'd right away. That is still in review. It is now Jan. and since he was not certified disabled in the short 90 day window after the MNCHOICE assessment, I have to start the process over to get services through Dakota County. I am now out of sick time at work.
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Name	Crystle
Demographic	Autistic individual; Family member of an autistic individual
Response	Don't assume we will ask for accommodations when we don't even know what accommodations we can have. Depending on my energy levels, I can not and will not read the reams of paperwork that comes with governmental and healthcare care work. My brain won't absorb the information correctly. Case workers should automatically be assigned when applying for governmental programs and healthcare settings. They should give you the option to opt out if you don't feel you need it or for them to periodically check on you.
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Name	Cullen Forster, Veteran
Demographic	Autistic individual; Family member of an autistic individual
Response	The capacity of screening and diagnosis for adult autism desperately needs to be expanded, nationwide. The waiting lists to receive a screening or diagnosis is months at minimum, years at the worst, which can have negative results as the person awaits receipt of official documentation, to receive accommodation in the workplace or scholarly setting. The cost of the screening is also excessive, at approximately $3000 out-of-pocket, especially considering the possibility of receiving a false-negative diagnosis from a provider with outdated, male-centered education about autism.
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Name	Cyndi
Demographic	Family member of an autistic individual
Response	More everything. Children and families are suffering. They have waiting lists up to 2-3 years in some places for diagnosis, as well as several months for therapy. High needs adults are suffering. Lack of day programs, group homes, therapies are a very huge burden on families.
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Name	Cynthia L. Reed, Parent
Demographic	Family member of an autistic individual
Response	Easier access to regular meds so that prescription renewals are not an anxiety producing event as insurance companies have tightened the window for refills. Medical and behavioral teams that do home visits for routine medical procedures and behavioral interventions/trainings. Housing for adults with Autism!!! Provider training for more effective care. Recognize that "community" is the place that welcomes our son, his posse, NOT forcing him to be part of the broader community. Have program providers understand medical comordities and train staff to make appropriate accommodatiions.
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Name	Cynthia Macluskie, Autism Society of Greater Phoenix
Demographic	Family member of an autistic individual
Response	Education of professionals at ERs, behavioral health facilities and medical professionals. Allow for complete medical evaluations in behavioral health facilities instead of saying these evaluations are outpatient services. Allow ERS to do complete medical comorbid evaluations for those with complex symptoms whose behaviors may prevent them from getting outpatient evaluations. Fix billing issues that would allow for both behavioral and physical health evaluations at the same time.
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Name	Cynthia Tyler
Demographic	Family member of an autistic individual
Response	Autism is as common now almost as common as wearing glasses- which is the most common disability in the world. It should be as easily adapted to as that. Disability services in this country are abysmal and need a massive update. Ask autistic persons FIRST and LISTEN to what they say they need, involve them in designing the access to services and supports.
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Name	D. Buzz, guardian and SDE Supervisor
Demographic	Service provider, health provider, or educator
Response	All of the above. And those supports and services need to be implemented immediately. The time for talk and discussion has long passed. These indivduals need ACTION!
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Name	Dale
Demographic	Family member of an autistic individual
Response	All of the above are needed. People need to be trained to provide the medical care as well as learn to support people to communicate using various types of AAC
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Name	Dallen Williams
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	One thing I've found particularly helpful is software to "read" text to me. One on one training on the job is also helpful. More community resources that focus on adult life instruction. Many of us grew up with parents who also did not possess the skills to lead a successful adult life as many of us inherited the conditions. Things like balancing a check book, paying bills, filing taxes, and generally organizing life in some way, down to cooking and cleaning do not come naturally and were not taught to us.
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Name	Damaris Hadayia , Parent
Demographic	Autistic individual; Family member of an autistic individual
Response	Equitable access to education and services based on the person, not on school systems/ insurance companies estimation of the cost and the “precieved benefit” of someone they don’t know. Better access to programs that help with the cost of having an autistic loved one. Better programs for parents who work and support an autistic loved one. Better transparency in the SSA system and claims through them for assistance! Getting your child the right care/ education and resources should not be an uphill climb made more difficult by those who are supposed to be helping.
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Name	Dana Haff
Demographic	Autistic individual
Response	Teach providers about comorbid conditions. No physician I have seen has even a rudimentary understanding of the health conditions that frequently co-occur with autism.
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Name	Dana Holz, Center for Drug and Health Studies, University of Delaware
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Reduce silos in governmental agencies so that funding can be directed to this population, and so that programs are inclusive to autistic people and other people with disabilities. For example, SAMSHA could require states to report disability status in mental health and substance use treatment data and/or provide funding for programs that would be more disability inclusive.
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Name	Dani
Demographic	Autistic individual
Response	Insurance coverage and access to services
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Name	Danica Allen, Educator
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I like the example given. Also—more individualized support for each unique individual. More funding.
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Name	Daniele Armstrong
Demographic	Autistic individual; Family member of an autistic individual
Response	Sadly we need to address the bias within most people who are allistic or those were those who have been mold to believe there is no such thing as autism(even if they are unknowingly Neurodiverse themselves) they are just spoiled and demanding attention, and just need to conform to social ideals. Second, would be addressing the compounded complications of functioning in our society when autistic. For those who have high needs, disabilities that are diagnosed or undiagnosed, along with co-occurring conditions, make it nearly impossible to confirm and work to provide for ourselves in our already failing economy. We have those who are extremely fortunate, looking down at all people with less resources, just telling them to work harder, save more when they are unable economically with the funds, they have to take care of themselves in any capacity with a system stacked against them. This is strong and probably a word solid to most but there’s only so much you can express in little boxes.
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Name	Danielle Christy, Private Practice psychologist
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	More training for all medical providers and educational service delivery systems. Move away from deficit driven medial model to a social model of disability where we look more at environmental modifications instead of changing the person. Less funding of ABA and more funding of interventions consistent with the social model of disability.
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Name	Danielle Mays
Demographic	Family member of an autistic individual
Response	Insurance coverage, more accessible information, programs for all age ranges, services and therapies more widely available, education for both neurodivergent and neurotypical people on autism and other conditions
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Name	Danielle Terrell
Demographic	Service provider, health provider, or educator; Other
Response	Address staffing issues that have existed for decades. Equitable access to healthcare services, and therapeutic services. Increased training and support for parents and caregivers.
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Name	Danielle Willsher-Goodman
Demographic	Autistic individual; Family member of an autistic individual
Response	Client centred support built and designed around them and their needs as all individual with individual interests, experiences, preferences and had lots of bad experiences with services already. Need more gentle, tactile, compassionate, trusting and reliable access with colour, safety nets with sensory considerations factored in and no hard and fast expectations.
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Name	Danni Zou
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Supports to improve education for very high cognitive autistic individuals
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Name	Danny Schaible
Demographic	Family member of an autistic individual
Response
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Name	Danyale Sturdivant
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Culturally Responsive Research, Diagnosis and Treatment
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Name	Darcy Janowski , parent
Demographic	Family member of an autistic individual
Response	psychiatry available and knowledgeable about autism and mental health conditions with it. more school day programs and residential options. paying staff well and educating in care for the disabled individuals
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Name	Dave, A citizen from Oregon
Demographic	Autistic individual
Response	Career Placement and Housing first.
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Name	David
Demographic	Autistic individual
Response	Everything. Healthcare companies dont take seriously and even some providers. Get far more help from peers. I suspect addressing autism more proactively will actually reduce mh costs due to other morbidities that result or misdiagnosis.
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Name	David Gartland, Father
Demographic	Family member of an autistic individual
Response	Doctors acceptance and patience with unique autistic behaviors
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Name	David Grady, California State Council on Developmental Disabilities, Central Coast
Demographic	Representative of advocacy organization; Other
Response	Person Centered intervention. Vocational Discovery. Peer and ambassador programs. Community Awareness Building. Celebration of the Autism Identity.
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Name	David Kaufer, Parent
Demographic	Family member of an autistic individual
Response	Greater support for schools to provide individualized assistance to students in need.
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Name	David McWaters
Demographic	Family member of an autistic individual
Response
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Name	Dawn Werner
Demographic	Family member of an autistic individual
Response	Better access to care. Appointment times take forever and many doctors aren't much help. Better insurance coverage to gain a diagnosis.
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Name	Day, Autistic, ADHD, Dyslexia,and co
Demographic	Autistic individual; Representative of advocacy organization; Other
Response	Equitable access to and accessibility of services, insurance coverage, service system issues, patient-provider interactions
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Name	Dean
Demographic	Autistic individual; Family member of an autistic individual
Response	PDA diagnosis being widely available. PDA awareness and training for all healthcare professionals
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Name	Deb
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Improved Accessibility to insurance covered services
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Name	Deb
Demographic	Family member of an autistic individual
Response	More mental health support for high functioning citizens with autism.
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Name	Deborah Bilder, University of Utah Huntsman Mental Health Institute
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Improvement of crisis evaluations by medical providers.
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Name	Deborah Gill
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Better pay and training for support staff. Better day services to engage him. When he is bored he acts out.
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Name	Debra Yurschak, NCSA member
Demographic	Family member of an autistic individual
Response	State & federal laws should allow employers of record to be added as paid staff since they are the ones who do the bulk of caregiving for their individuals. Also all name brand medications should be covered by insurance vs mostly generic for those with stubborn to treat behaviors that don't respond to generic meds. Also insurance should cover a yearly MRI, CT Scan, X -rays as part of their annual physical for those with severe self injurious behaviors & pica to catch broken bones, swallowed objects, brain injuries & other physical conditions caused by the individual that could be causing chronic pain. Self injury is more often than not a sign of chronic pain. It is also a cry for help and should be taken seriously by doctors. Usually they won't order additional testing because of insurance. Only the most wealthy can request any and all tests and pay out of pocket for these tests for their individuals to rule out anything physical. Same as any thoroughbred owner would do for a prized racehorse. Humans deserve the same treatment, in fact to give better medical treatment & care to animals over human beings seems a tad unethical, if not borderline illegal. More respite providers, weekend camps, more day programs that don't exclude because individual needs 1:1 support
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Name	Delia Ruiz
Demographic	Family member of an autistic individual
Response	Equitable access to and services and insurance coverage and high quality parent trainings.
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Name	Deon
Demographic	Autistic individual
Response	Care-providers should listen to autistic people and get information from autistic educators whenever possible. Often times I see a sense of superiority from doctors when discussing autism and they act like they know more about autism than those actually experiencing it.
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Name	Devorah, mother
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	ABA as a related service that is covered by the school district is desperately needed, education to teachers in schools both private and public about autism especially the high functioning kids how to address behaviors how to help the kids navigate school and social integration withing the school setting. I would love to see coaches in schools to be a point of contact for staff and the child.
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Name	Diana Gonzalez Madin
Demographic	Family member of an autistic individual
Response
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Name	Dongmei Li
Demographic	Other
Response	I think family care should be promoted for children aged 0-3, and I recommend a set of English DVD textbooks designed by Harvard University - Disney-world of language; and 3 years old is a critical period for children to begin to adapt to society, so I advocate that The age of compulsory education is raised from 5 years old to 3 years old, ensuring that children, especially bilingual children, can enter full-day preschool from the age of three.
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Name	Donna Costello, Private practice. Retired from public school as school psychologist working with students K - 12 with what was formerly known as Asperger’s
Demographic	Service provider, health provider, or educator
Response	Insurance coverage for one on one coaching and other services for developing daily living skills for independent living, plus career counseling and support. Most important are service providers who comprehend the depth of the underlying issues that renders a high intelligence individual with suboptimal to poor functioning in everyday life. These individuals have amassed much specialized knowledge and could be supported to be productive in their areas of speciality. They want the support.
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Name	Donna Johnson, Parent
Demographic	Family member of an autistic individual
Response	Services to support young adults and adults who receive a late diagnosis and missed the window of opportunities that exist for younger children. Training workforce to support youth and young adults who receive a late diagnosis when the manifestation of symptoms appears to be more visible (e.g., depression, anxiety, executive planning disorder) System of services challenges
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Name	Donna Narey
Demographic	Family member of an autistic individual
Response	I think equitable access to services. My son doesn’t fit in the Down syndrome world, and he doesn’t fit in the autism world. Services tend to be for one diagnosis or another.
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Name	Doreene Donald
Demographic	Family member of an autistic individual
Response	Insuarance coverage for aba therapy plus more help to help parents rest sometimes. Parents with autistic kids most of us don’t rest. There should be counseling for parents with autistic kids
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Name	Dr Christopher Pyne and Holly Swan, Parents
Demographic	Family member of an autistic individual
Response	Until we start paying people equitable rates to help our guys, there will not be trained people to work in this field or help our guys in a way they deserve, rather than pay employees less wages than those who serve us at McDonalds.
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Name	Dr Jessica Myszak, Help and Healing Center PLLC
Demographic	Service provider, health provider, or educator
Response	All areas of autism services and supports could be improved to better support children, adults, and families of autistic people. Currently, waiver programs are inequitable across states and have very long wait times for services. Because of the variability in individual needs, the offered services are not always what is needed by the individual. Services and supports for adults are minimal for all but the most significantly impacted individuals.
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Name	Dr. Autumn Dae Miller
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	1) Stop antiquated forms of ABA services (we have to stop telling people it's ok to force someone not to be themselves when we know this has caused physical and emotional pain). 2) Create & fund programs that have combination skills including professionals with LIVED EXPERIENCE where insurance and/or waiver funding can be tapped that would support the need for bio-psycho-social centers (NOT antiquated inpatient hospitals who do NOT know how to support Autistic clients or typical ERs that restrain clients they cannot chemically control) where folks would be able to safely seek NEURODIVERGENT-AFFIRMING support...this has NEVER been done outside of the "private pay/elitist-funded" world. 3) Requirements that ALL providers who say they offer services to Autistic clients to go through training run by Autistic individuals every year with regulatory requirements based on the parameters of that care. Ex: If you say you serve Autistic clients at this ER, your response to someone who needs to scream and run when touched better not be to tie them down and give them IM injections!
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Name	Dr. Bernadette "bird" Bowen (She/they/Dr.), Media Ecology Association
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Other
Response
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Name	Dr. Henny Kupferstein, Doogri Institute
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization; Other
Response	Licensed Clinical Social Workers and Medicaid Service Coordination to advocate in a case management position. The access issue is solely based on breakdowns in communication within a broken system. The autistic person shouldn't be burdened with calling to see if a referral arrived, and should benefit from service professional to ensure Timely and Appropriate access to care. We can't do it alone.
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Name	Dr. Karissa Burnett, Divergent Pathways: A Psychological Corporation
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Autistic people should always be actively involved in decisions about their care. However, navigating systems of care and self-advocating can be daunting. When accommodations are not in place and environments are not affirming, challenges in communication may hinder the ability to access support. Across services, it is important to enhance accessibility, promote inclusion, and ensure that services are responsive to varied needs. Creating sensory-friendly environments across settings can make a significant difference. Training, ideally by those with lived experience, is needed for healthcare providers, educators, and support staff on autism and co-occurring conditions to improve patient-provider interactions and quality of care. Ensuring that all autistic people, regardless of their location, socioeconomic status, race, or gender, have equal access to services is crucial. This includes expanding services in underserved areas and reducing financial barriers to care. Insurance policies should be more inclusive and flexible to cover a broader range of services and interventions for autistic people with co-occurring conditions. It is imperative that the neurodiversity-affirming framework is integrated into services, and that they are covered by insurance. Currently, many insurance companies and service facilities will only accept autism assessments that use the ADOS-2, which can under-identify high-masking autistic people.
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Name	Dr. Marcy Epstein, University of Michigan/Athena Autism
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Much more funding for families who care for autistics, especially those with violent or aggressive reflexes. Situate autism more clearly within ADA, covering autism in its rearticulation. We need jobs and job protection. We need to afford independent living, wherein we're most at peace. We need everyone trained in autism access-- allowing for non-use of telephones, giving us quiet, quick, and on-point interactions, low conflict, listening to us, not engaging in immediate dislike or rejection, microaggressions based on the perception that we are rude, etc. We need a different kind of unemployment insurance, better health coverage for diagnosis and trauma therapies, EMDR.
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Name	Dulce
Demographic	Autistic individual
Response	Provide sensory bins so autistic individuals can stim without stigma, ear plugs for sensory overload, and access to a weighted blanket or stuffed animal. Make ear plugs weighted blankets and sensory items available to be covered under insurance or HSA. And optionally provide tablets with communication capabilities for partially mute and fully mute individuals.
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Name	Dylan M. Fish, Disabled Autistic Student at RIT
Demographic	Autistic individual; Family member of an autistic individual
Response	Enhancing autism services and supports necessitates a focus on equitable access, service system improvements, and positive patient-provider interactions. Addressing disparities in accessibility, insurance coverage, and eliminating barriers to services are vital steps toward ensuring comprehensive and inclusive support.
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Name	E.R
Demographic	Family member of an autistic individual
Response	Consistency across-the-board with practitioners and diagnosis. As well as our support systems in the autistic community acknowledging this is on the autism spectrum and a subtype. With PDA we have had autistic therapists cause more damage, because they are ignoring that it even exists and needs very specific treatment plan
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Name	Elena, Mother
Demographic	Family member of an autistic individual
Response	For people that do not have a support system, such as my son (who has me and his father, as well as a wonderful community habilitation worker, Medicaid service coordinator, etc), insurance covered advocates that work for autistic individuals - not the school system, not the medical community, no one but the individual in question, would be a good place to begin. However, even those on the spectrum, such as my son, who has had me as his lifelong advocate, still need more assistance in order to have their living and working situations, not only improve, but be more ‘normalized’ as well. As for issues with members of the medical community- across the board- education on disability, including case studies in medical schools, etc. that include people on the spectrum as well as those with other disabling conditions needs to be made mandatory.
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Name	Elenna
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Providers often do not have training to work with autistic adults. Most training is geared towards young children. This is slowly starting to change but providing incentives for providers to pursue additional training to qualify themselves to work with autistic adults could help. Insurance is extremely important - however, insurance companies are incentivized to fight against covering care (mine randomly dropped the only therapist who is qualified to treat autistic adults that I have found). Publicly-funded health services are necessary to improve the quality of care for any chronic or permanent condition. That or insurance companies need strong penalties for refusing to cover care arbitrarily. Public transit and more effective paratransit is an accessibility need for autistic individuals like my brother who cannot drive at all. It is not appropriate for my brother to be in-transit for 4 hours on a trip that would take 30 minutes by a standard bus, but that has happened repeatedly.
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Name	Elio McCabe, Autistic Women & Nonbinary Network
Demographic	Autistic individual; Representative of advocacy organization
Response	There is a serious access need for autism screening in racially and socio-economically diverse settings. Although the prevalence of autism does not differ across racial or socioeconomic boundaries, diagnosis has consistently occurred earlier and at higher rates among white male children from higher socioeconomic backgrounds. It is only against the backdrop of COVID-19 that the Autism and Developmental Disabilities Monitoring Network saw its first year in which children from minority backgrounds were diagnosed with ASD at a higher rate than their white peers. Even then, male-identified children were still four times as likely to receive an ASD diagnosis as female-identified children. This is not an accurate representation of autism diagnoses. Female-identified children are often misdiagnosed, or not diagnosed until much later in life, missing out on early intervention and critical support. Estimates of the “true” number of female-identified people with ASD diagnoses vary, with one recent study suggesting as many as 80% of autistic women are not being diagnosed until adulthood. More research is needed into the current diagnostic systems in place that are creating this racial, socioeconomic, and gender divide. It should not take a mass disruption on the scale of COVID-19 for children of color to receive autism diagnoses at a rate equivalent to their peers. We must not wait for something even greater to address the gender divide.
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Name	Eliot C., Disability Network Washtenaw Monroe Livingston
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Person-centered planning Coordination of Community Mental Health services (Michigan claims to have universal mental health care through CMH, but the same treatments are not available in every area) Provider education on autism acceptance and neurodiversity Insurance that covers autism services beyond ABA
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Name	Elise Aguilar, ANCOR
Demographic	Representative of advocacy organization
Response	The Medicaid Home and Community-Based Services (HCBS) program is integral in improving the lives of people with autism. The HCBS program furthers the independence and empowerment of people with autism in their homes and in the community by offering person-centered habilitation supports designed to assist in acquiring, retaining, and improving the adaptive skills necessary to support community inclusion and integration. Yet, waitlists for HCBS programs for people with I/DD can be years long. Underinvestment and inadequate reimbursement rates have left providers unable to offer competitive wages, which has led to high turnover and vacancy rates. As a result, providers report higher rates of program closures and an inability to take on new referrals. The workforce shortage causes tangible negative effects for people with complex and co-occuring disabilities. A lack of consistency among staff severs bonds that have been created over time and leaves individuals without a person who is familiar to their unique needs. Without stable support in the community, individuals are at higher risk of hospitalization and institutionalization. The IACC must support policies to address the direct support workforce crisis, including increased investment in HCBS and guidance to states to support reviewing reimbursement rates. Strengthening access to person-centered supports furthers the IACC’s commitment to supporting services to maximize the quality of life for individuals with autism.
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Name	Elizabeth Bennett, Children's Hospital Colorado
Demographic	Service provider, health provider, or educator
Response	Colorado services are a mess with all the changes to CCBs. Getting services requires parents to have time and skills and access which are things not distributed equitably across all families. Kids with parents who are good case managers appear to have better outcomes than kids whose parents don't have the means to manage their child's team, for whatever reason. Rural areas have terrible access and few choices for many of the services we recommend. The inability to provide telehealth across state lines is an enormous barrier in the West where services are spread out and providers are few.
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Name	Elizabeth Doolittle
Demographic	Family member of an autistic individual
Response	patient-provider interactions, teacher-student interactions
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Name	Elizabeth Emen, Emen Counseling Services
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Focus research and understanding that informs services and supports on the lens of the nervous system rather than behavioral and compliance based models of functioning. Services and supports need to emphasize the importance of internal experience over external signs of neurotype differences. Prioritize putting PDA, Pathological Demand Avoidance/Persistent Drive for Autonomy in the DSM or find an alternative way to standardize the awareness and inclusion of PDAers and other high masking autistics in all communities of life.
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Name	Elizabeth Larned, MA, LMHC-A
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	advocates in medical spaces would be a big deal, it's difficult for folx with autism to relay their experiences in a way that most medical professionals are receptive to, as they can be seen as "argumentative". Remaining employed is the biggest challenge for adults with autism. I'm a mental health professional so I can't speak to how to address that, exactly, but lack of income is really crushing for someone who can't work due to their disabilities.
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Name	Elizabeth Olson
Demographic	Autistic individual; Family member of an autistic individual
Response	There needs to be a way for autistic people to get more help financially, almost like a universal income. Working while being autistic is extremely difficult and there needs to be a way where we can work half time and then receive a supplemental income, or an entire supplemental income . I’ve been denied for disability income twice, and I would only receive $800 a month if I got approved. That is not enough to live off of. Disability income is designed to keep disabled people in poverty, and there needs to be a reform where it’s easier for people to get help and receive enough money to live off of.
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Name	Ellen
Demographic	Autistic individual
Response	1. Services for all ages & levels of support 2. More support for caregivers 3. More healthcare providers with knowledge about autism & co occurring
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Name	Ellen Kopel-Puretz
Demographic	Family member of an autistic individual
Response	get quantified data to encourage universities to properly educate teachers, therapists, and other medical professionals on HELPFUL accommodations and supports
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Name	Elyssa Bolt
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Service needs sometimes overlap with research needs. I identify four areas of need for increased services: first, the abolition of Applied Behavioral Analysis (ABA) practices that are often wrongly perceived as therapy; second, the establishment of appropriate supports in school settings; third, greater visibility in all areas of life of diverse experiences of autism; fourth, funding for social support groups for a greater range of ages.
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Name	Emilee
Demographic	Autistic individual
Response	Humans instead of automated services, better public transportation
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Name	emily
Demographic	Autistic individual
Response	Like I've said, a lot of the obstacles come down to autistic styles of communication being dismissed, disrespected, invalidated, and pathologized. While I could write out extensive suggestions for improvements to every system we interact with, this text field only allows 1500 characters. ([profanity redacted] decent of you to let us navigate between answers, though.) And so again I believe this comes down to a matter of acceptance. We need for skilled allistics to become more willing to translate what we are saying, and that requires acceptance that we are who we say we are and we mean what we say we mean. If a broadly applicable protocol can be adopted by allistics (trauma-informed practice in all fields) then autistics will be more able to communicate. When we can communicate accurately about our sensitivities, those sensitivities can illuminate needs that extend beyond our community. It is the acceptance of the systems as they exist, to the detriment of autistic loved ones, that prevents allistics from being able to hear us when we talk.
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Name	Emily
Demographic	Autistic individual
Response	Easier accessibility to insurance, not just Medicare/Medicaid. Improve ethics in healthcare.
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Name	Emily
Demographic	Autistic individual
Response	Easier online options for communication and access to services. I don't want to talk to people. I will avoid many things if it means I have to speak to a person. Texting options would be helpful.
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Name	Emily Garris
Demographic	Family member of an autistic individual
Response
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Name	Emily Paige Ballou
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Availability of one-on-one assistance navigating the healthcare and health insurance systems.
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Name	Emily Ransom
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The improvement for individual’s with severe autism and their families more resources to help with the challenges. Improving waitlist for therapies to help address the self injurious behaviors or challenging behaviors. Providing families with professional mental health therapists to help address their needs as well. Being an autism parent to a child with severe autism can take a toll on parents mental health. It’s vital the support is there for the families as well as the child and/or individual.
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Name	Emily, Autistic individual
Demographic	Autistic individual
Response	Insurance coverage for autistics, especially autistic adults, is critical. I depend on Medicaid and my state’s SLS waiver to cover every one of my autism-related supports and services, including my in-home caregiver who supports me with the tasks of daily life, and the day program I attend, which is my only source of non-professional social interaction outside of the family members with whom I live. So many autistic individuals who have lower support needs than me, who are able to work to the degree that they do not qualify for Medicaid, struggle to find supports and services that meet their needs at all, never mind services which their private health insurance will cover, and whose copays and deductibles they can afford. A greater emphasis on affordable health insurance, and on services to meet a wide severity spectrum of needs, is of paramount importance.
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Name	Emma
Demographic	Autistic individual
Response	Make funding available for individuals for services that are considered luxury amenities, like grocery delivery, home repair, yard work, housekeeping, tax prep, a personal assistant, etc. There are tons of professional services already available that could make our lives so much easier, but most of us can’t afford them.
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Name	Emmett Lockwood
Demographic	Autistic individual
Response	I didn’t get my autism diagnosis till age 19 because I grew up with parents who due to the forced sterilization of my great grandmother and forced institutionalization of my great great grandmother were worried about how a diagnosis would mark my life and peoples views of my potential. What could be improved in supports is really any support for individuals diagnosed in adulthood with Autism and the elimination of autism registers in states such as New Hampshire that scare parents out of seeking diagnosis and currently leave children without answers and without help. Insurance coverage for supports other than Applied Behavioral Analysis therapy - which has been shown to lead to increased rates of PTSD in autistic individuals who endure this therapy that seeks to make us neurotypical - is the bare minimum. Also equitable access to services to communities of color, individuals assigned female at birth, and impoverished communities. As a mixed white and indigenous trans man I have experience first hand how some providers still believe that white cisgender boys have autism this blocks access to diagnosis and access to services for many individuals.
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Name	Erin , Parent/guardian
Demographic	Family member of an autistic individual
Response	There are no current services or access for any actual care for our loved ones with profound autism. Once they fall off the service cliff which is finishing the school district programming, they’re left with nothing but to sit at home. Caregivers and those with profound autism struggle equally trying to keep the left one safe Well also, the provider trying to work and keep a roof over their head. These are individual who cannot be left alone. Ever. They need 24 seven care! Often times they’re larger than us parents stronger than us parents. We have no help except for to go to the emergency room. My son was stuck in hospital last year for 46 days with nowhere to go. No help no services. We need day programs Because on DVR employment does not work for these individuals! I will say that again, Washington state state thinks, sending individuals to work with a job coaches, even feasible. It is not! Our loved ones are stuck, hidden away home from the world. They must have access to a day program Like so many other states! It’s an absolute crime the way Washington state discriminates within the disability community. If you are not able to hold a job, then you get no services. It’s a simplest that
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Name	Esther Caletka, HOME Incorporated
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Greater research into, and greater understanding for all of society of Sensory issues, and sensory needs. We need more housing, as well as supports for older parents who choose to care for their adult children. Many cultures do not believe in sending their kids out to be cared for by "strangers". We have CDPAP for certain populations - why not for those with autism/DD/ ID
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Name	Ethan, Care Giver/spouse
Demographic	Family member of an autistic individual
Response	Insurance coverage. Support systems, therapy, Schooling, Accessibility of services to adults instead of just children
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Name	Eugenia Ramsey
Demographic	None Indicated
Response
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Name	Evren Wiech-Barnes
Demographic	Autistic individual
Response	Fix the world you throw us into and leave us to the wolves to survive in. I wouldn’t need anxiety meds at all if I didn’t constantly live in fear. I lived in fear of my father, my classmates, my bosses, etc. I am stuck in fear. Now that I’m here, maybe take klonapin off the “controlled substance” list because it makes getting the one simple dose I have been on since 2001 a nightmare each month. Chasing down doctors for scripts, fixing communication between dr and pharmacy, dealing with my own executive dysfunction to remember to start the process each month is all a nightmare and exhausting. So the world messed me up and now it is my job to fix your systems to make sure I can cope?Maybe fix that.
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Name	Ewa Omahen, PhD, Retired school psychologist
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Better training of all educators and professionals in autism Partnering with and empowering families and autistic individuals Better funding for therapies other than ABA, such as speech and language and AAC training for all Easier access to quality comprehensive medical care including mental health.
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Name	Fin Finney
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Access, consideration of SDOH, challenging requirements for formal diagnosis at the funding level and provision level, communication training for healthcare providers, consideration for autistic equity in development of mental health processes/funding/resource development. At all levels, treating autistic people as collaborators and leaders in their own care.
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Name	Firos Shamsudeen
Demographic	Family member of an autistic individual
Response	1. Need to have more sport programs to participate for autistic children. We found one basket ball training but trainers were not sure about to give training to autistic children and we didn't go. 2. Insurance should be covered more for autistic children with lower copay. 3. More sessions and awareness is required for parents and family members who has autistic children. Frequent sessions create a supportive community where parents and family members can connect, share experiences, and provide emotional support. This sense of community can be invaluable in coping with the unique challenges of raising an autistic child.
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Name	Fraida Flaishman
Demographic	Service provider, health provider, or educator; Researcher
Response	parent and physician training for identification of autism and related symptoms, education about services available for diagnosis and intervention for those with autism including the related deficits, education about the different diagnosis and interventions families can access to support individuals with autism as well as their family members.
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Name	Frank Camilleri
Demographic	Autistic individual; Family member of an autistic individual
Response	Get rid of private insurance entirely. As a nation, we will have no motive to solve any of these problems if we're not able to prioritize it as a common goal that all people need to deal with. Also, it's extremely hard to navigate a system when every bone in your body is telling you "this is morally wrong, and logistically inefficient."
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Name	Freya
Demographic	Family member of an autistic individual
Response	Cost of assessment, diagnosis and services Equitable access to above Wait times to see Specialists and Allied health professionals
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Name	Gabriele Arnhold
Demographic	Autistic individual
Response	Service that is tailored to my needs would be of great advantage. Unfortunately, there is no help in my area for autistic people who do NOT have an intellectual disability. I was told that because I was highly gifted, I could not get help. They also said it wasn't okay that I also have a physical illness/disability, that would be "too much", I was told that it would be cheeky and brazen for me to go out in public with this multiple disability and ask for help.
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Name	Gabrielle Connelly
Demographic	Family member of an autistic individual
Response	Insurance coverage, access to autism schools for all children who need it. Swim therapy. Food therapy. Better research on sleep disorders.
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Name	Genevieve Chaput, mother of 21yo with autsim
Demographic	Family member of an autistic individual
Response	The biggest issue is accessibility to services like respite, GROUP HOMES for adults, social security disability services and Medicaid. My 21yo son holds a part time job (with great understanding that his outbursts are from autism) but cannot get Medicaid or social security services because he is not physically disabled. We have been fighting this for 3 years now!!! He will NEVER be able to afford his own place and is unable to understand how to pay bills. What will happen to my son when I die? He won't be able to keep the house. Who will take care of him? How can I teach him to be independent without social services and available group homes for him to live in with a CNA to check in on him or group mom to ensure the place is clean, bills are paid, etc.???? Adults with disabilities are often abused and have little to NO ACCESS to services. Their parents take care of them until they pass away and then these adults are left homeless and without access to help if they are trying to hold a job and be a functioning member of society. PLEASE HELP!!!! My son must hold a job with routine and feel useful or he has additional mental health issues. I cannot allow him to stay home 24/7 just to get social services. He would hurt himself and others without having his job. Please, please help fill this gap for those who are trying!!!! I am so scared of what will happen to my son when I'm no longer around to help him and all my family is gone.
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Name	george knoth
Demographic	Family member of an autistic individual
Response	need for better services for housing especially when family is gone, no place for these individuals to live and then when family is gone the state needs to place in a emergency shelter, no long term planning for this aging population
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Name	Gerald Wilgus
Demographic	Autistic individual
Response	Easy access to services that would provide ASD-1 individuals having challenges with delayed social maturity.
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Name	ginamarie
Demographic	Other
Response	all samples you be listed and heal our nation to actual care for the living...... another trigger moron oxy - abortion become much illegal but the abuse and dismiss and departmental no qualty level care connections for my life be alarming. some the system created and set up to be islands of money making machines so i no sures how to improve this without stop the cash cow greed and thinking for some reason we be less than human cause we be have a label and differ needs. last time check ever person be differ and ever person be have the unique needs
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Name	Glen , The Jewish Guy Business venture PTY LTD
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Glenda Hayes, Grandparent
Demographic	Family member of an autistic individual
Response	Special Ed teachers might have training in these areas to address particular issues. A school which has special ed classes, might also employ a PT or OT to serve students with necessary therapies without taking child away from school, for regular treatment.
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Name	Gloria Derosa
Demographic	Family member of an autistic individual
Response	One big issue is how services, therapists, doctors etc disappear once an individual turns 21 and leaves school. Another issue has been access to health insurance. Angela has a Medicaid waiver which we are very grateful for, but often doctors will tell me they are not taking any more Medicaid patients. I am paying for private insurance that is $ 1,200 a month out of pocket along with other medical costs. Because of the intensity of my daughter needs , the shortage of caregivers, I retired “early” after 30 years of teaching, a living wage for caregivers would encourage others to become caregivers.. There is also an unintended consequence of the tax laws concern ing parent/family care providers 2014-7, difficulty of care payments, they do not take federal income tax out of our checks, but they also are not taking social security taxes out , which will cause some parents not to be able to earn enough quarters to qualify for retirement benefits and/or their social security checks will be greatly reduced.
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Name	Grace, Autistic person
Demographic	Autistic individual
Response	Providers need person centered training to help autistic people with co-occurring health issues as they currently disregard our own lived experiences and our conditions go undiagnosed and untreated or misdiagnosed and inappropriately treated. Additionally we need better insurance coverages for diagnosis, and supports that are NOT ABA.
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Name	Grant D. Sparks, MS
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	First, autism should be wholly recognized as an immediate qualifier for disability services, social security disability insurance, and subsidized healthcare. Far too many autistic people exist in state of perpetual agony due to their forced participation in a society that does not provide adequate accommodations for their needs, often suffering in silence due to an inability to adequately portray their internal experiences. Research suggests that something like 85% of autistic people are unable to maintain employment, which in turn leads to the exacerbation of all the symptoms listed above due to reduced or removed access to care. It is notoriously difficult to qualify for social security disability with a diagnosis of autism spectrum disorder, stemming from the inaccurate attitude of many neurotypical agencies of “if you’ve held a job once, you can do it again.”
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Name	Greg
Demographic	Autistic individual
Response	Any service for autistic ADULTS would be nice. I wasn't diagnosed until my 30s and it's impossible to get real help at all.
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Name	Gretchen Stewart, Center for Learner Equity
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Remove therapy session limits from insurance. Widen insurance approvals for holistic modalities (music therapy, hippotherapy, chiropractic, etc.). Encourage new pediatricians in training to become developmental peds.
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Name	H
Demographic	Family member of an autistic individual
Response	Where we live, there is a big push towards ABA as the main “evidenced based” treatment that government funding money can be spent on. This needs to change so that autistic people can allocate their funding allotment towards a wide variety of supports that they choose according to what they know would be of help to them, this should include things like using funding money to pursue special interests.
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Name	Harriet Stuart
Demographic	Family member of an autistic individual
Response	Appropriate residential and training services.
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Name	Heart of Texas Behavioral Health Network
Demographic	Service provider, health provider, or educator
Response	All of the above examples. Access to care by providers who are well-trained in evidence-based treatments would improve outcomes and satisfaction with services.
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Name	Heather
Demographic	Autistic individual
Response	Services right now are mostly 'resources' that provide the numbers to other places that provide numbers to other places - it's a circle jerk of 'resource' places, with very very very few actually providing real world help/resources/supports. More benefits through health insurance for in home help, help managing day to day life.
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Name	Heather
Demographic	Family member of an autistic individual
Response	Provide free training to daycare centers on autism behaviors, communication and ABA therapy basics. Make is mandatory for state licensed daycares. Increase the income limits to qualify for financial support for parents of autistic children and autistic adults. Provide more financial support for sensory regulation needs and items and safety items for elopers like fence installation and GPS tracking. Having an autistic child should automatically qualify you for the childcare voucher. Due to the amount of work that we miss for our children but still have to pay childcare providers whether our child was there or not.
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Name	Heather
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Reliable doctors and a more affordable option to seek diagnosis and treatment for adult autism. Better resources and services for people who need more help in their daily lives. Laws and regulations to protect those on the autism spectrum from job and housing discrimination. Though there are laws that currently do that, in my experience, many job opportunities lack the accommodations that many autistic people need, such as being able to wear headphones or bring fidget toys to work with them to help with the overwhelming sensory issues we experience at a typical 9-5 work environment.
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Name	Heather
Demographic	Family member of an autistic individual
Response	More access to Mental Health
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Name	Heather Bourne
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	To develop and then pay for interventions, Pathological Damend Avoidance needs to be characterized and recognized.
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Name	Heather Cellini , SLP
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	access to support and education for families supporting Autistic members. Insurance coverage for non ABA supports such as speech, occupational therapy, and neurodiversity affirming therapy for anxiety, etc…
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Name	Heather Gray
Demographic	Autistic individual
Response	Insurance coverage, knowledgeable providers, optional treatments not including medication, knowledge throughout healthcare
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Name	Heather machin
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Certainly equitable access to and accessibility of services and complete, total coverage of services. More importantly, the quality of services - after personally and professionally interacting with support services, it is breathtaking to see how different the same professionals can operate in their education, thinking and treatment execution. The quality of care can be very poor despite how it is advertised.
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Name	Heather margiotta
Demographic	Family member of an autistic individual
Response	Insurance acceptance by providers, specialist, adult services, ABA therapy
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Name	Henrietta Reder, Friends of Ann Kiley Center; Parent
Demographic	Family member of an autistic individual
Response	Access to services is needed. Just trying to find any are consuming. Residential services are few and far between. My husband and I were fortunate to have extra speech and occupational therapy paid by my husband's insurance when our son was young (He was born in 1981.). Not everyone had this option.
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Name	Holly
Demographic	Service provider, health provider, or educator; Researcher
Response
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Name	Holly Connor
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Insurance needs to see that ABA is not the only treatment. Looking at Medicaid models that offer a larger variety of services such as respite, skill building, developmental therapy, social skills, community inclusion, CHILD CARE after the age of 12. Before and after school care for kids over 12 and summer camps. Better collaboration with schools on getting services that wrap around a student and provide whole person and family support.
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Name	Ian Morris
Demographic	Autistic individual
Response	We autistics are often overlooked as differently abled. We want to be accepted as part of society, and recognizing us as being different but good people will help knock down access to service systems issues. I used to work for a police department, and answerng 911 calls taught me that my autism came with plusses and minuses. I sometimes did not perceive tacit messages callers were trying to purvey. However, I could sometimes hear when someone was in trouble of physical violoence or was considering suicide in a way that neurotypcial individuals did not always understand. We autistics can help society.
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Name	Ilana Gruber, Pennsylvania Advocates and Resources for Autism and Intellectual Disabilities (PAR)
Demographic	Representative of advocacy organization
Response	A. Training & Education: There is a significant gap in training and education for professionals working with this population, including teachers, therapists, psychiatrists, law enforcement officers, nurses, and physicians. Updating curriculum and continuing education programs to include information on how to best communicate with, diagnosis, and treat this population is crucial. B. Diagnostic Practices: There is currently greater demand for qualified autism diagnosis providers than there are providers available. Delay in diagnosis can have serious consequences for this population and additional resources are needed to address this issue. C. Hospitals: Current practices often leave individuals without proper care and discharged prematurely from hospitals. Many of the people who experience aggression, self-injurious behavior, or suicidality are heavily sedated and/or confined in restraints instead of provided appropriate supports and treatment. Policies must be implemented to ensure this population receives adequate care. D. Guidance for Parents: Many parents struggle to navigate multiple service systems for their children with co-occurring autism and other conditions. Greater resources for how parents can access services through the lifespan are needed to ensure parents can easily navigate and access services for their children.
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Name	Ines Echegaray
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	All of the listed options above (Equitable access to and accessibility of services, insurance coverage, service systems improvements, patient provider interactions) would help us. Most imperative is patient-provider interactions being less able-ist and more focused on what we say we need from service providers. And, of course, education, so that others can see us without our having to explain ourselves, which we often cannot do.
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Name	Irene Tanzman, parent/guardian
Demographic	Family member of an autistic individual
Response	Give families a choice of service models. Expand and offer public intermediate care facilities ( ICF) to families who need this.
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Name	Izabella Pulvermacher, Dental Coordinator Department of Developmental Services
Demographic	Service provider, health provider, or educator
Response	Supports need to start when they are young and build on successes and not to wait until the person is an adult. Also, children with autism become adults with autism.
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Name	J Maust, HUB 302
Demographic	Family member of an autistic individual; Other
Response	Patient provider services (esp upon death of primary caregiver), service system issues, Life-skills needed for the comorbidity issues, many types of medications, get rid of Paratransit for some & give a car service to cut down on anxiety, nursing
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Name	J Olson
Demographic	Family member of an autistic individual
Response	Accessibility and access to services and supports. Increased understanding, awareness and acceptance of these co-occurring conditions. Parents have to go on a wild goose chase to find what their child needs. Services and supports that are backed by Autistic individuals, and not traumatic to Autistic individuals like ABA therapy. Not a one size fits all support plan for all Autistic individuals. Neurodiversity affirming supports and services.
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Name	Jack Brownn
Demographic	Autistic individual
Response	Restricted access to services due to diagnosis.
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Name	Jackie
Demographic	Autistic individual
Response	Education on effective communication methods, understanding when a shutdown or meltdown occur it IS NOT the autistic person throwing a tantrum. Access to disability for autistic adults and improved access to pathways to get an official diagnosis as an adult.
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Name	Jackie Ceonzo, Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	We need treatment facilities covered by Medicaid. We need dental care with sedation. Dental issues are cause of many behavior problems. We need better meds and better oversight and distribution. We need quality day and residential programming to flourish with funded by self directed Medicaid. We need a professionally trained workforce to care for these guys in community settings most appropriate to their needs.
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Name	Jaime
Demographic	Family member of an autistic individual
Response	More clinics, centers need to be facilitated. More educational programs on the issue. More personnel need to be capacitated to be able to provide spectrum services . More schools with special intelligence should be built for kids on the spectrum so families don't have to travel long distances to find these services. More equipment and tools need to be developed. Reliable and reduced means of transportation for all families assisting with the education of a child on the spectrum. More economic assistance/resources need to be made available to the families or to the child alone as soon as there is a disability diagnostic. The sooner any child in the spectrum has access to these benefits would be crucial to the child's well being.
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Name	James V. Bradley
Demographic	Autistic individual; Family member of an autistic individual
Response	Access to and availability of services: housing, food, and health care without being limited to a geographical location, the lack of government-issued identification, or length of employment. A lack of the aforementioned items does not mitigate the need to have a safe place to live, food to eat, and health care.
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Name	James Weingardt
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	School based education of peers of autism, nuerodiversity, functioning including randomness and noise in joints Autism, Micromovement approach (Torres et al 2013). Training people how to respond with non-speaking, minimally speaking and unreliable speaking individuals rather than "he/she didn't tell me" Behaviorism trauma due to increased understanding of physiology and the polyvagal theory. Youth sports how untrained coaches often parents and organizing bodies do not understand early childhood development and how youth sports system systematically excludes autistic children based on perceptions of behavior vs physiology as well as limit setting. stadiums, concerts and events can be more neurodiversity friendly including entry into parks, low lines or crowds, trained staff or an independent neurodiversity entrance. Difficulty getting needs addressed due to unreliable speech in the short 15 min window. providing sense of safety and assurance that what is said will be further looked at with provider and that they don't get to decide whether they will listen or not to us including recommendations for specialists.
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Name	Jamie Cullen, Parent
Demographic	Family member of an autistic individual
Response	Doctors with the knowledge of how to help. More Hospitals that can care for individuals who need both psychiatric care and health care. People to be paid better so we have more housing and care for our kids. I had to quit my job to find long term care for him and I have to move to a state in order to find that care which is away from the family and friends that have helped us throughout our lives. These are the decisions I make because this country is not waking up to the fact that in 2002 1 in 150 babies were born with autism and now the CDC predicts in 20 years 1 in 3 babies born will have autism and half of them with other comorbidities. What will happen when all there people needing services cannot get them and there is no now able to help. We need help now, We cannot continue to wait while our kids are in hospitals that do not understand how to care for them so they are restrained? What are you doing now to help all these individuals?
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Name	Jamin Johnson
Demographic	Family member of an autistic individual
Response	Better pay for support providers-- the agencies take the dollars and pay the staff what they can, but they have to hire anyone willing to work with our challenging family members. So, we get unskilled, bidding their time, workers that turn over ALL THE TIME! Training and $upport to doctors willing and able to work with our kids/adults with challenges to find solutions.
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Name	Jana Young
Demographic	Family member of an autistic individual
Response	Acknowledgment that PDA is real and legitimate
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Name	Jane Horn
Demographic	Family member of an autistic individual; Other
Response	I know examples of very early speech therapy getting a child past echolalia. Too often, speech therapy is not available until a pattern of echolalia is established. Research on what treatment, and how early is needed. Parents have too often been told “let’s wait and see.” Referrals and treatment are too late. Sometimes parents wait for YEARS for waivers or vouchers to come through. If early intervention is to work, providers need to know about it, and parents need to be guided to the resources EARLY.
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Name	Jane Roberts, University of South Carolina
Demographic	Researcher
Response	integrated care particularly in rural areas,
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Name	Jane Seymour
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Insurance coverage for treatments such as neurofeedback therapy, more mental health coverage, respite support, educational support when the child can’t be in a public school
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Name	Jane, County AE
Demographic	Other
Response	The indivduals that have a diagnosis of Autism with higher IQs and open in ID ODP waivers, providers are struggling to support these indivduals in our currret service sytem with Indivduals diagnosed with ID. Some of these indivduals have severe mental health issues and are not wanting to be supported in the MH system because of their Autism diagnosis.
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Name	Janet Callahan
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Equitable access to mental health treatment is a problem for everyone, but autism makes it even less equitable. Insurance companies need to stop saying "well they're autistic so this won't benefit them." Providers need to stop assuming that something is "just autism."
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Name	Janet Shouse
Demographic	Family member of an autistic individual; Other
Response	Insurance, both private and public, should cover both outpatient and inpatient care for those behavioral health conditions associated with individuals with the most significant impairments. Medicaid reimbursement should cover the costs of treatment, so that health care providers are willing to accept Medicaid recipients, particularly adults. Treatments for such behavioral health conditions must be recognized as medically necessary under mental health parity. Currently finding willing and knowledgeable health care providers for this population is extremely difficult. There are vast “health care deserts” across the nation for this rapidly growing population. For many people, there are no in-state options for a teen or an adult with autism, intellectual disability, and severe behavioral health conditions. Families struggle to find and fund distant hospital stays for loved ones who may not be able to communicate except in person. We need an intense effort to educate health care providers on the needs of individuals with autism across the spectrum. Medicaid waivers should be portable, so that families can move to another state without a child or adult losing their supports and services or having to go to the bottom of a years-long waiting list. Medicaid and other funding should enhance payments for supporting and serving those 30%-40% of autistic individuals with the most significant challenges. Enhanced funding is vital for waiver providers as well as health care providers.
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Name	Janice
Demographic	Family member of an autistic individual
Response	Better insurance coverage. It seems like all the psychologists and psychiatrists who don’t accept insurance are the best and the ones who do are subpar
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Name	Janice, Parent
Demographic	Family member of an autistic individual
Response	Financial assistance for autistic individuals to access appropriate medical care, including physicians and disability resources.
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Name	Jared Goodrich
Demographic	Autistic individual
Response	Treat us like any other individuals.
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Name	Jason B, Self
Demographic	Autistic individual; Family member of an autistic individual
Response	Outreach programs, autistic communication specialist that can "translate" for medical staff, affordable direct services or insurance, accessibility for people with sensory and social issues, being patient and providing accommodations, resources / staffing, not waiting six months for an appointment!
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Name	Jason Montgomery
Demographic	Family member of an autistic individual
Response	All of the above listed in the questions. I think that those with autism need services in school, in college, and in living situations. Having someone that can assist a person with Level 1 autism can change that person's life. Insurance coverage for these services (or government coverage) is critical.
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Name	Javier, Advocate
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage, I myself as an autistic adult and also a parent to my child who is also autistic, we should receive more help and insurance coverage to have access to more counseling and psychology help.
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Name	Jeanine Castagna
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Pay autistic workers minimum wage, recruiting and retaining qualified providers for autism services (right now lack of staffing is a huge issue accross agencies), increase job opportunities and employment services for autistic people
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Name	Jeannie C
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Having a thorough screening process for all children whether or not they present early autistic traits or not. Most parents are not aware of the signs or symptoms of early childhood autism so they miss these children completely and the children grow up feeling inherently different than their peers so they begin masking at young ages and begin the slow descend into what I believe manifests early anxiety related to social situations. We need equal access for all children in public schools to early autism testing. From there we need accessible and affordable services for these children and their families. We need education GLOBALLY on autism and how common it is and the ways to nurture our community. We can and will save lives with early detection of autism.
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Name	Jeffrey Poms
Demographic	Autistic individual
Response	All of the above examples! but a particular point that i've encountered is that at 44 years of age and having suspected for YEARS that i had autism its taken 2 years to find a provider that was 1 in network and 2 which was most difficult available who did ADULT assessments. people in my generation were often overlooked especially those in the autistic community who are high masking and have communicative skills because well, we figured out how to "make" ourselves fit in but this of course comes at a great cost to our energy and mental health.
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Name	Jeffrey Reeves
Demographic	Autistic individual
Response	Vitamins are what make me functional. Tell autistics to try vitamins. Equitable access to and accessibility of services, and service systems issues too. Vitamin B-100, Magnesium, Fish Oil, Flaxseed, are beneficial.
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Name	Jeffrey Slater
Demographic	Autistic individual; Family member of an autistic individual
Response	Better awareness and knowledge among providers of autism in adults
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Name	Jeffrey Thomas
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Insurance coverage, stipends, accessibility. Things that normally insurance would cover (mental health therapy, physical/occupational therapy) haven't been covered by my insurance in the past because supposedly my issue is not "severe enough"
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Name	Jemima J
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	-Caregive training programs that are aimed at early detection and intervention. -Developmental monitoring that collaborative in nature, involving all stakeholders in the child's life, parents/ therapits etc. -Community level interventions. -Acess to free resources.
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Name	Jenise Woolf, Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Better integration between DD system and BH system within State Dept of Mental Health. Doctors and especially psychiatrists should receive training in dual-diagnosis. There should be standard protocols for dually-diagnosed individuals seen EDs to rule out physical causes (dental, constipation) with each evaluation. Early intervention services should be more accessible, no wrong door, whether entering through BH system or DD system, and individual should be able to receive services without being screened out.
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Name	Jenn
Demographic	Autistic individual; Family member of an autistic individual
Response	Additional educational and employment options
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Name	Jenn Raley Miller, Parent
Demographic	Other
Response	- Policy and systems change is needed so patients can access Occupational Therapy regardless of whether they "come in through the autism door". The OT community has established excellent assessments for sensory needs, including interoceptive, proprioceptive, and vestibular. - Insurance plans should be directed to approve Occupational Therapy without conditions, as a first-line therapy for individuals with sensory differences. - Funding is needed to attract practitioners to specialize in pediatric and/or sensory integration OT.
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Name	Jennifer Colberg, Grandma
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Services available especially in rural areas, insurance for families that don't qualify for assistance but don't make enough to purchase good insurance
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Name	Jennifer Higgins
Demographic	Autistic individual; Family member of an autistic individual
Response	Equal access to services for all who are labeled as autistic rather than based on income level. Standard level of care or therapy for those diagnosed with autism.
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Name	Jennifer Proffitt , Parent and Teacher
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Insurance should cover every aspect of autistic care. Whether it's doctor's appointments, medication, tutoring, therapies, and especially respite care. There needs to be After High School additional schooling that is publicly funded. There needs to be support with going into Community College for autistic adults who can handle this. This should also be funded by the government. Parents should be reimbursed for being caregivers for their own children. There should be screening through every Milestone doctor's appointment for autism and School screening starting in preschool.
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Name	Jennifer Quigley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Eliminate Medicaid waitlists and income limits. No wrong door is important for families without knowledge of the systems that support people.
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Name	Jennifer Reppond, autism parent
Demographic	Family member of an autistic individual; Researcher
Response	1. Disabled people are the most discriminated people in the world. Put focus on the outlandish discrimination experienced by disabled people. 2. Medical therapies, etc., need to fast forward and intersect where research is today. The medical community needs to admit that they have no clue how to treat people on the spectrum. And in doing so, make the changes necessary to help parents. 3. Education needs to get on the ball in the public education classroom and the university lecture hall. 4. Insurance needs to stop dictating what treatments are acceptable. Last time I checked, doctors are supposed to decide what treatments are best for each of their patients. 5. Community education (all the community - employers, local governments, churches, civic organizations, non-profits, etc.). Sponsoring conversation cafes would be a start - to get movement at the local level.
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Name	Jennifer Sibley
Demographic	Family member of an autistic individual
Response	Expanding medicaid services for individuals with Autism would be a step in the right direction. Medicaid reimbursement rates, compared to the rates for commercial insurances, are not even close to comparable, which drives many medical practitioners to not accept Medicaid reimbursement. This in turn, limits the providers that individuals with Autism can choose from for medical services. There should also be some work into incentives for new providers to set up practices in rural settings. More providers equals greater access to services for individuals across all disabilities.
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Name	Jenny Folley
Demographic	Autistic individual; Family member of an autistic individual
Response	more info to schools and gps
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Name	Jesenia, NeuroSpicy Networking
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	UBI, universal healthcare, food is human right, autonomy is a human right, access to sexual reproductive care and offering housing is a human right, education and training made by autistic adults, removing childism and ablism from structures and resources, creating Autistic sensory compliant laws and enforcement for workplaces and all public spaces and venues. Remove the institutionalization and incarceration of autistic and disabled people, remove modern day slavery allowed in the 13th amendment. Offer advocates and trained support specialists for all autists regardless of age and abolish hate groups such as Autism Speaks and ABA therapies on autistic people, especially children. Require cultural competency, and sensitivity training, DEI, and CRT to ALL staff engaging with disabled people. Require continued training for all medical staff on infectious diseases, care work, and latest research on autism and comorbidities. Require patient-advocates for all interactions with the medical, education, judicial systems. Require employers pay for and provide third party legal services to all disabled employees to incentive them to not discriminate their employees. Require affirmative action for employers making over 5 million in revenue to require at least 40% or more of their workforce be disabled employees or pay 40% more in taxes to cover disability health costs. Remove limits on asset building for disabled people to have access to healthcare.
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Name	Jess Butler
Demographic	Autistic individual; Family member of an autistic individual
Response	FUNDING. Plain and simple. Cut some of the military trillions and throw like a few billion at the autism industry for once. There is a dire shortage of experienced, tolerant service workers. They don't want to work because their wages are PATHETIC for the jobs that they do. There is high turnover, which is detrimental to getting treatment to "stick." Service organizations go out of business for the same reason. There is a total LACK of understanding that ABA and other behavioral-based therapies are DEGRADING to autistics. We are NOT "broken" so we do NOT need "fixed," what we NEED most is help to live in a "foreign" world. We need funding for supportive housing, funding to pay the workers who support us, funding to pay for employment services, funding for AAC, funding is the key. But we KNOW we will NEVER get it from the US Govt.
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Name	Jesse Scott
Demographic	Autistic individual
Response	Increased insurance coverage for specialized products, prescription diapers/pull-ups, assistive devices and mental health counseling related to incontinence management. Mandated accessibility standards so facilities have ample family/accessible restrooms, changing tables and sensory-friendly spaces for intimate care needs. Cultural competency training so providers understand autism-incontinence intersections, ask appropriate questions, and accommodate appointment structure/environment needs. Self-advocacy and system navigation training autistic voices are centered in informing policy improvements over time.
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Name	Jessica
Demographic	Autistic individual; Family member of an autistic individual
Response	We need to have access to friends. Autistic people often die by suicide because we lack social supports. A social worker assigned to us, friendship groups, support groups, and group classes would be so helpful. Most helpful, however, would be educational requirements in all schools teaching people who aren’t autistic about our lives. If they understood that we weren’t all the same but experienced similar trauma we might have a fighting chance at living healthier lives. We really need more understanding and support from society.
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Name	Jessica Bearden
Demographic	Service provider, health provider, or educator
Response	More insurance coverage. Insurance companies often will not reimburse for autism because it is not curable. However, there are ongoing needs that can be addressed with therapies. The lack of coverage restricts access to services… putting professionals in a bind to choose between steady, healthy income, and meeting the needs of the community. Alabama needs more support for families, more options for respite. The lack of community resources and access to care are causing chronic stress in families with autistic children… leading to chronic illness and burnout. Therefore, costing more money long term for insurance companies.
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Name	Jessica Blackmon, Just an ADHD dyslexic autistic girl
Demographic	Autistic individual
Response	Yes there is a ton that needs to be done for autistic ADHD dyslexic adults. (1) Due to my financial problems of struggling I can't work and go to school at the same time it would not be possible to pay my bills and to do school it will take me too long for school and I would fail it because it takes me much longer to intake what I need to learn. (2) the expense to get a specialized tutor to help me with my reading and writing skills is the cost of rent at this current time of this questionnaire along with every tutor that I spoke to they want me because I'm severely dyslexic to be there 3 days out of the week for 7 hours I would not be able to work enough to pay my own bills and this tutor it would be impossible. I have much more to say but I can't fit it in your limit of characters
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Name	Jessica Iverson
Demographic	Autistic individual
Response	If mental health therapists and psychiatrists screened for autism and ADHD symptoms and were better trained at recognizing it in patients. Insurance coverage of assessments and therapy options for all ages. More sensory friendly doctors offices and hospitals. More therapists that focus on addressing the needs of the autistic person as opposed to conforming to make things easier for family, school, and society. If someone is diagnosed with autism, all family members should be encouraged to be screened as well. more accountability and higher paid, better trained staff at schools and residential facilities for people with higher needs. More education around and access to augmentative and alternative communication for all autistic people especially higher support needs and nonverbal autistics.
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Name	Jessica Mullaney
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Patient-provider interactions could be helped simply by a greater awareness of co-occurring issues on the part of healthcare providers. I went undiagnosed with Hypermobility Spectrum Disorder for 38 years because healthcare professionals incorrectly assumed that my complaints were psychosomatic, due to my co-occurring ASB and anxiety diagnoses. Ultimately, I had to learn about this condition on my own and ask to be evaluated for it, rather than any physician identifying it, largely because they failed to take my complaints seriously. This led to significant medical trauma and needless suffering for many years. Sadly, I have heard similar stories from others with these conditions. We can do better.
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Name	Jessica Phillips
Demographic	Family member of an autistic individual
Response
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Name	Jessica Smith
Demographic	Autistic individual
Response	Have autistics and neurodivergents be the main staff for autistic and neurodivergents in any setting. if you dont have the neurotype, disability, ect then they should not be helping us learn how to handle it. for the love of all things cute and fluffy END ABA or at least staff it with people who are actually trained and have overcome these issues so we can actually help autistic children navigate this world. instead of putting people in there that might never comprehend our neurotype thus forcing us t behave in ways they see as appropriate/normal instead of the children learning proper ways to handle their disability. A lot of autistic/ neurodivergents view allistics/ neurotypicals the same way they view us. strange, weird, extremely rude and struggle with the concept of empathy.
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Name	jewel brobst
Demographic	Autistic individual; Family member of an autistic individual
Response	maybe suggest to more insurance companies to cover tests. make the accessibility to services more known, like what we can get what we cant, what is around.
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Name	Jill Escher, National Council on Severe Autism
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Insurance, both private and public, should cover both outpatient and inpatient care for behaviors associated with Profound Autism. A new insurance code should be created to correspond with these clinical impairments (eg, aggression, self-injury, pica, elopement, property destruction), and treatments must be recognized as medically necessary under mental health parity. With urgency we must foster a much larger and more robust network of care providers in all states to address the care needs of this rapidly growing population. In addition, many suffering with severe and profound autism require a therapeutic model of long-term residential living with onsite or collaborative psychiatric and medical care. Medicaid and other funding should directly and realistically address the needs of those suffering with the most severe forms of autism.
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Name	Jill Ide, University of Washington Autism Center
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	service system issues
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Name	Jim MacNaughton, parent
Demographic	Family member of an autistic individual
Response
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Name	Jimee
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Access to Providers that are well trained in the research surrounding Autism in AFAB & minorities! So they aren't given inaccurate diagnosis. My late grand mother was treated for Bipolar Depression when she was Autistic!! This would have aleviated so many of her depressive symptoms!!
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Name	Joanna
Demographic	Family member of an autistic individual
Response	Faster assessment times for kids with a diagnosis already of ADHD or ASD so parents don’t have to struggle . More thorough OT sensory assessment through NHS so parents don’t have to pay private to access their kids sensory needs . Access or an option of insurance to access private therapies , more access to play therapists . For paediatrics to recognise anxiety in children and to help parents to help their children without assuming the parents are to blame . autistic kids need more therapy options in general .
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Name	Joanne Miller
Demographic	Service provider, health provider, or educator
Response	Training on all facets of autism - from behavioral challenges, to communication methods, to simply "how do I interact with this person who has a diagnosis of autism", because if I've only met one person with autism, I've only met one person with autism. Insurance coverage needs to be beefed up to cover trainings and therapies for folks, and there need to be more providers who will serve the folks with the most profound disabilities, those who do require 24/7 care for the rest of their lives. We don't have enough qualified people for that very urgent need.
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Name	Joanne Van Hoosear
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage for supports other than ABA.
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Name	Jobless autistic
Demographic	Autistic individual
Response
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Name	Jody McCormick
Demographic	Autistic individual
Response	* Regulations to reduce sensory overload from advertisements, especially when advertising to children * Regulations to effectively eliminate any practice employed by producers of any form of digital media (i.e. video games, applications, digital devices, music, video, etc.) that are specifically marketed to children, of utilizing the mental or cognitive disabilities (including, but not limited to, those that are co-occuring with autism) for the purpose of monetary gain. * Federal protections for taking "mental health" days off of work to protect the mental health of employees diagnosed with autism * Metal health service coverage should be considered as necessary care (both as preventative care and as treatment) and be required to be covered by both private and publicly funded insurance providers. * Educational reform to better address the social and interpersonal challenges faced by children on the autism spectrum to provide equitable access to education for all children in the classroom.
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Name	joe valenti, parent advocate
Demographic	Other
Response	education and training. And then appropriate funding from the state and federal Medicaid.
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Name	John
Demographic	Autistic individual; Family member of an autistic individual
Response	Protection from punishment in school & at work by non-autistics that do not understand the difficulties in communication faced by autistics. I have lost multiple jobs/promotions because bosses did not/could not understand my communication needs & style
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Name	John Collins, Mass General
Demographic	Family member of an autistic individual; Researcher
Response	Everything for people with severe or profound autism needs to be improved. This population is NOT represented by self advocates, and does not have a voice in research or policy. People with profound autism have been ignored and as a result none of their needs are being met in a systemic way in any state. National data do not reflect this group. This is an urgent request to include people with profound autism in all future research considerations.
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Name	John Saito, Oregon Commission on Autism; Washington County Developmental Disabilities Advisory Council; Oregon Home Care Commission
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Medicaid Waiver funding should be contingent on requiring a state and its counties to guarantee accessible and appropriate capacity to residential care facilities, adult day programs (enrichment, recreational and employment), and in-home caregiver programs that must accept and support autistic people with co-occurring mental health and behavioral control issues such as self injury and aggression.
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Name	John Yacks Jr.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I think more consideration could be given to the fact that virtual visits and telehealth aren't the same as being in person. I have cases that I manage where the provider won't hear what my member has to say half the time.
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Name	Jonathan Fratz
Demographic	Autistic individual
Response	Autism services and supports could be improved by providing more training to medical professionals in how to address co-occurring conditions for autistic people, improving accessibility of services and supports from medical professionals that already have training and expertise in providing care to autistic people with co-occurring conditions, and providing training to increase positive patient-provider interactions in which autistic people feel seen and heard when it comes to communicating their needs, concerns, symptoms, and treatments for their co-occuring conditions. As an autistic individual, I have experienced not having my symptoms being taken seriously because they were viewed as an extension of my autism and not my co-occurring condition.
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Name	Jonni Jordyn
Demographic	Autistic individual
Response	First, remove the stigma related to autism. Having an official diagnosis can follow a person around and may even prevent them from moving to some countries. Second, training to recognize that not all autism patients are non-verbal. Highly masking individuals with genius IQ's may also need mental health care to diagnose co-morbid conditions earlier in life.
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Name	jorja harper schall, OHSU lend
Demographic	Autistic individual; Researcher; Representative of advocacy organization
Response	Housing group homes institutions
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Name	Josephine Weber
Demographic	Family member of an autistic individual
Response	Insurance needs to cover behavior therapy and additional services outside school. The service school gives (speech, ot) is not enough. Pay providers more! We need more quality providers. Revamp the special ed public school system. Pay the Aids!! Train the aids!!!
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Name	Joye, service coordinator in HCS program
Demographic	Service provider, health provider, or educator
Response	people who have autism have the same need for counseling as anyone who is going through stress and trauma. Counselors are needed who accept clients with autism. Also, the question should be " conditions for a person with autism." (who wrote that?)
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Name	Jude
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	understanding -- ACKNOWLEDGEMENT of some of the less overtly obvious -- but passively self-destructive life patterns which ripple dysfinction through a lifetime through familys and down through generations
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Name	Judith Ursitti, Profound Autism Alliance
Demographic	Representative of advocacy organization
Response	To improve health and connection, it is critical that clinical practice guidelines specific to profound autism are developed and implemented. Additionally, enforcement of protections under federal mental health parity law should be a priority. Because people with profound autism can't provide written comments to requests like this, we’ve attempted to convey their experiences through caregiver feedback: "Every hospital that receives federal funding (all of ‘them) should be mandated to have a designated ER & inpatient care coordinator on staff for all patients with ID (including profound autism) & other disabilities. It doesn’t need to be a separate position. The role can be a (trained) regular staff member. Hospital rules & procedures may need to flex for various reasons to improve the quality of care for our community, & management will need to approve changes. For example, a caregiver in the room overnight, dispensing regular (Dr approved) meds, consolidating scheduled tests & procedures. "He can never ever ever be left alone. That doesn't sound like a big deal compared to the myriad of other issues we've faced in the past and that other families grapple with now, but it's pretty major when you're talking about 66-year-old parents and a nonverbal 38-year-old guy who would not be accepted at any of the nonprofit residential programs in the area and is still on the waiting list for the most appropriate community-based Medicaid Waiver funding."
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Name	Judy Stoltz
Demographic	Family member of an autistic individual
Response	My son NEVER would have been referred to as cognitively impaired if experts were not worried about protecting their current standards The EXPERTS don’t accept or acknowledge practices that would really help our autistic population Non speakers are graduating from high school AND COLLEGE Non speakers who the experts identified as mentally impaired As severely autistic As not being able to spell their own name Imagine if we all ignored ASL or Braille as a valid form of communication By denying autistic people communication partners and use of spelling boards, the EXPERTS are denying our kids and young adults the right to an education and a full life
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Name	Jules Good, Autistic Self Advocacy Network
Demographic	Autistic individual; Representative of advocacy organization
Response	There is a dearth of accessible, affordable, & quality mental health (MH) care for autistic people with co-occurring MH conditions. Providers lack the education & training, as well as competence & confidence, to serve autistic people of all ages, with or without intellectual disabilities. This service gap prevents autistic people from receiving necessary support. Network inadequacy compounds the issue; “83.86% of all US counties lacked any diagnostic resources [for ASD].” Provider quality & quantity need expansion. Punitive seclusion, restraints (mechanical or chemical), & other coercive measures create barriers to MH care for autistic people. These cruel anachronisms are used disproportionately on autistic people of color, particularly Black autistic men & boys. More retrospective research is needed on the long-term impacts of restrictive & coercive practices, like the incidence of PTSD. Behaviorist interventions such as ABA should never be offered in lieu of or foreclose access to MH support. Behaviors termed “challenging or dangerous” are often natural responses to dehumanizing service systems or unsupported needs. These approaches prioritize outward conformity with neurotypical expectations over addressing underlying emotional distress. Effective modalities center patient agency. MH support includes, but isn't limited to, individual or group psychotherapy, peer support, social or affinity groups, & other types of therapy (physical, speech/language, sensorimotor).
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Name	Julie Bresette
Demographic	Autistic individual; Family member of an autistic individual
Response	Specifically, training the medical and mental health community as to how autistic bodies and brains function would be extremely helpful. Insurance coverage for autistic testing without stigma should also be made available. Access to and insurance coverage for physical and occupational therapy is needed as well.
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Name	Julie Emig
Demographic	Family member of an autistic individual
Response	Insurance coverage. Holistic approach from all clinicians.
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Name	Julie Lackey, OKIPSE Alliance
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Focused personnel that are trained to work with young adults rather than children. Studies that focus on young adults (ages18-26). The Inclusive Post Secondary Education initiative across the nation now lists over 300 programs in 49 states. Combining research with these IPSE programs to work on specific ways of supporting this population would be a natural fit for new frontiers to help young adults. See Think College.net for more information.
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Name	Julie Schweitzer, UC Davis
Demographic	Researcher
Response	Insuring that the services are of high quality. Equitable access and services available through the entire life span. Making it easier for families to understand how to access services.
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Name	K
Demographic	Autistic individual; Researcher
Response	It's difficult for many autistic people to access services. Many autistic people do not work fulltime and cannot afford quality care. Inability to drive or use public transportation can also make accessing doctors difficult. Professionals, especially mental health professionals, may not work with autistic clients. Doctors may not be thorough in investigating potential problems in particular for autistic clients who have very unusual speech, no speech, or intellectual disability. Diagnostic overshadowing is a major risk, especially for autistic individuals with higher support needs. Doctors may be belittling to clients or ignore them in favor of only communicating with caretakers, leading to very negative perceptions of or fears of medical environments. Finally, autistic individuals may not have the support needed to appropriately take prescribed medication, struggle to change their diet as recommended, or otherwise be unable to follow treatment recommendations on their own. Increased access to services, professional training, and home-support or creative solutions to improve self-care are needed across the board.
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Name	K
Demographic	Autistic individual
Response	All of that. It’s hard for me to make appointments and keep them, it’s hard to phrase things to a doctor in a way that will make them see what I am saying and not what they think they are hearing. They often have selective hearing about paitient issues, and I’m taken less seriously because of my anxiety, depression, and woman-passing appearance.
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Name	K
Demographic	Autistic individual
Response	I think it shouldn't cost so much money to access an autism diagnosis. I think the opportunity to work with individuals to help them determine what career direction would suit their skill set and giving them the tools and resources to develop those skills such as working with trade schools or colleges or on the job training.
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Name	K
Demographic	Autistic individual
Response	Coverage for every day consumables like KT tape, heating pads, earplugs as well support in work settings where accommodations may not be supported initially
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Name	Kaalyn
Demographic	Autistic individual; Service provider, health provider, or educator
Response	- less focus and public education on things like vaccines, cures, and prevention - increased science communication to the public on the diversity of "what autism looks like" - WILDLY more accessible testing/screening for dx (i.e. cost, number and availability of physicians, insurance coverage, etc) - increased *accessible* transportation to appts (i.e. noise and stimuli controlled, RELIABLE pick-ups/drop-offs, services that extend to rural areas - ease of application process to receive social security benefits - more insurance and medicaid/-care approved tools and assistive tech (headphones, communication devices, motor skill and orthotic supports, etc)
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Name	Kacey M
Demographic	Autistic individual; Family member of an autistic individual
Response	Access to more support, more funding towards social services, including mental health and wellness services into the medical system and not a separate and exclusive services, public education training AND funding, systemic accountability for the failures of how marginalized people are treated, higher research rates in people who are not just white, male, young autistic people, updating the DSM and medical terminology for people who are autistic, reformation of testing for ASD to exclude biases of racism, sexism, ablism, non-abrahamic religious based discrimination
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Name	Kaela
Demographic	Autistic individual
Response	That would require such an overhaul. Increased testing for people who lack access to be able to get testing covered by insurance. Shorter wait times to diagnosis. More clinicians trained in late diagnosis and autisin in women which is STILL missed so often. Training done BY autistic people not by neurotypicals who view us as incapable children. Insurance cover for therapy for autistic individuals. Insurance coverage for nutritonists for autistic individuals. I think being autistic should automatically qualify people for Medicaid as so many of us are multiply disabled and can't access the supports we need.
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Name	Kai
Demographic	Autistic individual
Response	More general medical professionals knowing how to communicate with autistic people. I get so anxious going to the doctor and I don't know what I'm doing and they tend to rush appointments and then I don't end up receiving care unless I bring an advocate with me. Maybe making it easier to get a trained advocate
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Name	Kai C.
Demographic	Autistic individual
Response	Understanding patients’ sensory needs in environments like doctor’s offices, hospitals, etc. and allowing them to carry sensory devices with them like headphones, fidget toys, etc. I don’t think I’ve ever walked into a hospital where I have actually felt safe in the cold sterile environment with the loud beeps and boops of the machines. We also NEED to allow for diversity in how doctors view autistic patients. We are not all [redacted] or savants, we are a larger more diverse group of people and deserve not to be treated like children and buffoons, or treated like we’re “too smart” or “too self aware” for mental healthcare when we may just have the language for what our issues are and not how to deal with them. Listen to people when they bring up problems, and trust that they’re smart enough to know what’s going on with their own bodies. I have been attempting to get treated for POTS for 10+ months now and none of the doctors believed my speculations aside from my general practitioner, and yet they put me through so many unnecessary expensive cardiological exams seemingly because they didn’t think my own interpretation and research of the symptoms was enough to go off of. Had they listened in the first place like my general practitioner did I could have saved somewhere in the range of $750 of unnecessary medical bills.
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Name	Kaisi rolfe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Patient provider interactions. I believe all schools should be teaching the Ron Davis method for both neurodiverse and neurotypical. Far to many children/adults are growing , maturing with essential life concepts being missed
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Name	Karen
Demographic	Family member of an autistic individual; Other
Response
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Name	Karen Ashikeh, Registered Nurse- Health Adviser
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Training and use of assistive devices to communicate by police, teachers and others to identify feelings and concerns could provide a standard and consistent ways for all who interact with the person, as well as to identity demographics and a listing of any c0-conditions the person has and what help needed and who should be contacted in emergencies. These can be used by family, teachers and health providers or in community interactions and should be a standard part of the earliest interactions that a child is taught from early childhood. The regularity, use and consistent methods of such interactions is both reassuring and routine for child and for helpful to those interacting with them. It should bring reassurance, communication tool and increase understanding that allows best outcomes of whatever the situation or issue.
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Name	Karen Barrett, Barrett Consulting
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Education to all administration managements and other employees and staff that directly or indirectly impact individuals with and IEP
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Name	Karen Gee
Demographic	Family member of an autistic individual
Response	Government needs to give tax credits to Businesses that hire autistic individuals. My grandson is looking for work where he can excel. All he needs is additional training on the job and he will always show up
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Name	Karen Kaye, Executive Director, Foundation for Autism Support and Training (FAST)
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Ability to have hospitalization for stabilization for autism/psychosis. He was on Thioridazine for 15 years and I never knew that when we had to wean him off, he would go into a psychosis and regress so extremely. Families need to better understand the risks of those heavy neuroleptics with autism.
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Name	Karen P, Special Educator/Autism Consultant/BCBA
Demographic	Service provider, health provider, or educator
Response	"buy in" throughout the medical community a tremendous lack of availability and long wait lists for any mental health treatment
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Name	Karen Scallan, Parent of Individual (22yo) with Autism and Down syndrome
Demographic	Family member of an autistic individual
Response	Create incentives for states to recruit and retain psychiatrists that are Autism, trauma and grief informed; Create incentives for schools to take advantage of training opportunities ; funding opportunities for schools to use to train all school personnel; create incentives for middle school schools to hire additional nurses with caveats around number of nurses available per number of students with neurodiversity (both identified in IEPs and those under 504 plans/medical diagnoses of Autism).
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Name	Karen Weigle, National Center for START Services and Chattanooga Autism Center
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	All examples you listed are important. Another critical factor is including people with autism in designing improved supports and services; listening to their input and guidance and using it drive change. People with lived experience are our best allies in doing this work, and many would like to do it themselves. We need to do better at ensuring they are included and driving this work to ensure the "rest of us" know what is needed/wanted, rather than using our own biased lenses.
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Name	Karey
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Kari Johnson
Demographic	Autistic individual
Response	Right now it's very difficult to get disability even though most people with autism can't work. Functioning in autistic people can vary wildly and can't hold a job even though they might seem like they can at first glance. There are not enough social safety nets in place and there are enormous barriers in place to access what little support does exist. I struggle to get through all of the red tape because it's very confusing and causes meltdowns.
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Name	Kari Knutson, PathPoint
Demographic	Service provider, health provider, or educator
Response
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Name	Kari Schaer
Demographic	Family member of an autistic individual
Response	Insurance coverage, provider accessibility (both diagnostics and therapy). We would also love family therapy at home (that is not ABA) to support our autistic child’s struggle with demand avoidance and meltdowns. School systems are not set up to serve this community. Schools do not have the resources or knowledge to support autistic PDA kids who have the ability to mask their symptoms in public, and then meltdown all evening/night.
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Name	Karoline Moxham
Demographic	Family member of an autistic individual
Response	More services particularly as they age out of the school system; better insurance coverage.
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Name	Kat
Demographic	Family member of an autistic individual
Response	STOP making them communicate in NT ways. It's so harmful.
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Name	Kate D
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Katelyn
Demographic	Autistic individual
Response	We need better access to insurance that's a given. Having accommodations at work is also a struggle. Companies with employers need training and knowledge on autism and co-occuring issues so they know and understand why they need accommodations.
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Name	Kathleen Meyer
Demographic	Family member of an autistic individual
Response	There is no housing vision for autistic adults with high needs. There is a shortage of affordable housing and a shortage of caregivers. A second significant number live with parents over 60 years old. Many are nursing home level of care but no nursing home would take them or care for them. Many of our adults can't wash themselves or brush their own teeth. It is difficult to get a haircut, doctor visit, dental cleaning. The questions of co-occurring conditions does not begin to touch on the challenges. What co-occurring condition makes it so difficult to cooperate with a physical exam? What is your definition of autism? In this spectrum some have relatively mild sensory issues, while others are debilitated by them. Is this a co-occurring condition or are you including it in the autism diagnosis? This line of questioning is not straightforward and will be of limited value to most people on the spectrum.
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Name	Kathleen Walker
Demographic	Autistic individual
Response	Patient-provider interactions: -Make sure providers have an up-to-date understanding of autism and don't make assumptions based on stereotypes. For example, a provider once asked if I really believe I have autism. This was our very first interaction so I can only assume they were making assumptions based on my personal info (e.g., that I live alone and have a full time job, etc.). I think it would be helpful for providers to have some education from autistic people with lived experience, including people with different needs and perspectives. -Educate providers about what sensory issues look like, how they may affect patients' ability to care for their health, and solutions that can help. For example, I found that using a continuous glucose monitor has been really helpful in managing my diabetes, as it would have been very hard to cope with daily finger sticks. It would have been great if my doctor had proactively suggested a CGM as an option (I had to research it myself and bring it up during my appointment). If dietitians or nutritionists could have training on sensory issues, this would also be very helpful for autistic people managing chronic illnesses.
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Name	Katie
Demographic	Autistic individual
Response	Mental health services covered by insurance better (I have Medicaid and almost no one is covered especially anyone who is educated in autism or trauma). I have so many therapists that have told me they’re on the waitlist for Medicaid and it’s so frustrating Medicaid won’t allow more providers. Also making all mental health providers (and doctors if possible) take courses on autism ESPECIALLY on what low support needs autism looks like.
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Name	Katie
Demographic	Autistic individual; Family member of an autistic individual
Response	Autism testing costs a lot of money, even with insurance. My son needs accomodations for school, so we needed to pay a lot of money that insurance didn't cover. My son's brand new school building looks beautiful but is a nightmare for autistic people - loud and massive, with tall ceilings that echo sounds. No quiet spaces or breaks available for him to decompress during the day. His teachers won't even let him step into the hall or wear headphones. These are simple, human quality of life things that everyone needs - but if my son doesn't get them, his grades and behavior suffer. Doctors need to ask better questions on assessments. "Do you struggle with racing thoughts?" Is a difficult question to answer. "How many times a day do you feel like your thoughts are uncomfortably fast?" Is much easier. I always want to answer a question, "it depends - what do you mean?" And that isn't allowed. If someone is born with severe autism, their life is immediately very difficult and expensive. Parents of autistic kids need more physical supports - childcare, food, accomodations from work. It can be devastating, and it affects an entire family.
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Name	Katie DuPree-Magat
Demographic	Autistic individual; Family member of an autistic individual
Response	Equitable access to diagnosis and coverage for OT, PT and Speech.
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Name	Katya Siddall-Cipolla
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	ELIMINATE ABA COVERAGE REQUIREMENTS. Payers will not cover more beneficial services because they meet the regulatory requirements by only covering ABA, which is abusive and not affirming.
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Name	Kay
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Kayla Weant
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Lower the barrier of entry for adults, AFAB individuals, nonbinary individuals, and people of color to access diagnoses. STOP recommending the use of ABA therapy as the default treatment for autism.
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Name	Kayn L
Demographic	Autistic individual
Response	More and easier to access services/testing for adults, especially those covered by insurance (state run and private)
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Name	Kd
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Improved patient and provider interactions for autistics with limited verbal language Equitable access to augmentative and alternative and communication devices— too much gatekeeping by service providers and lack of knowledge based on community, access, and privilege Equitable access to services based on geographical location How do we support those with genetic conditions which parallel autism? Do they also qualify for autism? How do we get providers and doctors on the same page about this? We need non behavioral based/ ABA treatment options for autism like Floortime, play therapy, etc. We need more public integrated preschool programs. In districts where there are limited spots (which is many) with the money For an advocate, get the preschool spots. That’s inequitable.
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Name	Kelley, parent
Demographic	Family member of an autistic individual
Response
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Name	Kelli
Demographic	Autistic individual
Response	Insurance coverage! Mental health services should be fully covered for autistic adults and the adult assessments as well. More teachers, psych professionals, and medical professionals need to be trained on supporting and caring for autistic people. Especially women and those who are high functioning because we are often missed/dismissed. More supports for autistic mothers and parents. And more spaces for autistic people of all levels to find info, services, and friendship.
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Name	Kelly
Demographic	Autistic individual; Family member of an autistic individual
Response	Social workers for autistic adults who are self-sufficient but could burnout at any time
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Name	Kelly Howard
Demographic	Family member of an autistic individual
Response
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Name	Kelly King
Demographic	Family member of an autistic individual
Response	Best practices are set aside at 18 - unless you are incarcerated. The neurodiverse fad backwaters the severe and nonverbal. Spelling to communicate is discredited leaving many without a voice. Trauma abounds with few of any skilled therapists to help the severe and nonverbal. Issues abound, the population increases, we’re missing the mark.
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Name	Kelly L. Nimtz-Rusch, DNP, RN, The Autism Collective
Demographic	Other
Response	From my perspective there is a much needed overhaul in this area. The current healthcare system is not designed to address autism. There is a lack of support, access, knowledge, insurance coverage to support an autistic individual through the lifespan. We have a piecemealed system.... autism impacts each part of the co-occuring condition. The individual may have severe communication limitations impacting his/her ability to appropriately communicate stomach pain which may lead to delayed identification of GI issues. GI issues can directly impact sleep,and exacerbate behavioral and psychiatric disorders. While it is great to have autism centers, we need to transfer this level of healthcare expertise beyond the centers. ECHO Autism is a start but we need transfer of knowledge that provides the means for physicians, APNs to diagnose with confidence and understand the co-occuring conditions that should be considered. They need access to experts (physician to physician consult) so that patients can be managed by primary care with the comfort of know they have access to experts with a phone call. We need to think of out the box and identify way to expand access and ensure insurance coverage is there to support the interventions/care needed
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Name	Kelly Tabeling
Demographic	Family member of an autistic individual
Response	More education for teachers and providers.
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Name	Ken
Demographic	Autistic individual
Response	For service providers to understand and respect autistics and learn how to understand and interact with them. A high percentage of early diagnosed autistics are tragically taught to be debilitated. This is typically due to misunderstanding autistic responses, mannerisms, etc. It also results in debilitating anxiety for the autistic. The goal is always to fix them and make them behave like "normal" people. This never worked for me, but leaving me to be me resulted in my very successful career and life. Just let us be us. We can do fine, if you just let us and avoid pushing us which only elevates debilitating anxiety.
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Name	Kendahl Damashek
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Many services are rendered through school districts, whose assessments target different goals than the actual autistic person wants. Respite should be provided to every family with an autism diagnosis, w/o additional bureaucracy. It has taken me years to finally be awarded respite; now that we have qualified (through OPWDD in NY), we are not given a case manager b/c my kids are too young. I have to do another application to receive funds I've already qualified for, after determining myself which agencies in my area are contracted. Pathological Demand Avoidance is not either heard of or respected by most professionals in the United States, so the guidance/support services offered--if at all--are inadequate/contraindicated. Insurance companies only cover ABA therapy, which the majority of autistic adults agree was abusive and traumatic for them. Diagnosis is a privilege; most insurance companies don’t cover this, esp for adults, even though the diagnostic criteria in the DSM has changed since we were children. There aren’t services available for “high functioning” adults.We have difficulty maintaining adequate work, but if we can’t afford diagnosis, we also can't receive services/SSDI. Executive dysfunction is a symptom of autism, but the bureaucracy required to receive assistance is labyrinthian. Many people can’t access resources *because* of their disabilities. Autism is genetic and it is highly likely that the parents of children needing support also need support.
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Name	Kenneth Kaye
Demographic	Autistic individual
Response	Universal insurance coverage for autism diagnosis (heck, Universal Health for all for that matter), laws that protect and defend the neurodivergent in the workplace, and process and system alternatives that allow for differing sensory experiences for equitable access to services.
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Name	Kerri Greig
Demographic	Autistic individual; Family member of an autistic individual
Response	Administrative / executive function type of assistance. It's honestly so difficult to get through the red tape hoops and it's so draining, so some of us stop looking for official help or apply for services. And less feeling like we have to prove ourselves deserving of the help. Less judgementalism etc.
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Name	Kerry
Demographic	Family member of an autistic individual
Response	My son spent nearly 15 years of his life suffering from anxiety and being medicated for anxiety at the highest adult dose. Only serendipitously did I discover that he suffered from low ferritin saturation-chronically. No doctor had tested this since his cbc was all within normal (though often right at the cut off number.) Once he began iron pills daily he was able to stop taking anxiety medication completely. His low iron status was causing the anxiety (and other problems) . Not one psychiatrist, psychologist or pediatrician tested his iron status despite it being a known ride along with autism and adhd. The government must mandate testing for known issues that co-exist with autism and recommend testing for immediate family, as well.
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Name	Kerstin Powell
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Access to affordable healthcare. Coverage for ABA and other evidence based therapies. Access to affordable mental health coverage.
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Name	Kevin Gerrity, Project Beacon TX
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	What (to me) is the most critical area for improvement is the post- 21 educational, vocational, social and (most importantly) residential opportunities for this population. It varies greatly by state, and even the most "progressive" states have backlogs, issues with the quality/pay of care providers, quality residential options, etc. We need to figure out where these guys are going to live/work/learn for the rest of their lives, after their parents pass, as a priority.
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Name	Kevin Ryle, Association of University Centers on Disabilities and the Autism Society of America
Demographic	Representative of advocacy organization
Response	Unintentional bias in the medical community – specifically the medical practitioner tendency to presume co-occurring physical and/or mental health issues are the result of Autism – is a well-known, long-standing issue in the Autism community. This presumption may occur inadequate medical and psychological training, inexperience of the physician, or even the communication challenges an Autistic person may encounter with contacting a doctor. Inequitable access to services often leads families to have to wait months to receive a diagnosis, and then sometimes years to receive services. A survey conducted by CMS showed that 60% of centers surveyed had over a 4-month waiting period, mostly due to workforce shortages (cms.gov). Additionally, the process of acquiring a diagnosis must be more affordable and accessible for Autistic people. Another important service that must become consistent across the country is Autism-specific training to law enforcement and first responders. Individuals diagnosed with Autism have unique communication and behavior that may cause those professionals to be suspicious of their behavior. It is known that about 20% of all Autistic people have an interaction with police by age 21; for the safety of Autistic people and those first responders, training is a necessity. A few states, such as West Virginia, have this training codified into legislation. Other states must, too.
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Name	Keyunna Harris, Caregiver
Demographic	Family member of an autistic individual
Response	Accessibility of services and government funding for therapies anf family care help.
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Name	Khalila
Demographic	Autistic individual
Response	More providers for autistic adults, providers trained in autistic communications, less chances for one provider to prevent care.
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Name	Kia Green, Emerge, Inc.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Autism Awareness, Autism is a spectrum of disorders. Most people hear and see information about Autism but there are so many horror stories, old wives tales, and falsehoods surrounding Autism. The promotion of truth backed bey evidence based research should be shared everywhere, in schools, in the workplace, on the news.
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Name	Kris Guin, Queerability
Demographic	Autistic individual; Representative of advocacy organization
Response	More training for medical professionals in autism.
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Name	Kristen Brake
Demographic	Family member of an autistic individual
Response	General family practitioners need to learn about autism and how to interact with people with autism.
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Name	Kristin Botwinick
Demographic	Family member of an autistic individual
Response	Simpler process to explain and facilitate enrollment in various programs eg insurance and self-direction. Fund initiatives that truly increase the wages of support staff and thereby improve the quality of workers
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Name	Kristin H.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	All of the above
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Name	Kristina Funk
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The APA and AMA have acted to reduce specialists (for example, behavioral analysis) from the health insurance marketplace. Education professionals are not supported financially, and schools in the USA use up the lifetime insurance caps for individuals before they are out of elementary age.
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Name	Kristina Tober, parent
Demographic	Family member of an autistic individual
Response	Access to high quality care, continuing behavioral supports into adulthood, safe residential placement where these individuals can still have access to the community, interact with peers, live meaningful lives, job training, FUNDING!!!!!
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Name	Kristoff Furgiuele-Weis
Demographic	Autistic individual
Response	Insurance coverage
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Name	Krystin LaBarge
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance needs to resource far more than ABA, which many autistic individuals find harmful and abusive. Access to services- including assessments needs to be more timely. Wait times for an initial evaluation are commonly 18 months +. In my family’s case the overall process took 7 years to arrive at a diagnosis for a child, gatekeeping precious resources and educational support in the process. Therapies to assist with apraxia and dyspraxia should be readily available, and would inadvertently assist with common dysregulation struggles as well.
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Name	Kyla
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Easier access to supports- fewer barriers
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Name	Kylie
Demographic	Family member of an autistic individual
Response	Access to support services and accessibility to services in all areas. In rural areas there is not enough support.
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Name	Kym Pettitt
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Patient provider interaction
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Name	L. Void
Demographic	Autistic individual
Response	Access to healthcare needs to be free and easily accessible over telehealth. People who mental disabilities don’t always have the capability to plan ahead for appointments.
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response	Increase autistic persons autonomy. Lower cost and increase accessibility of services.
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Name	Laura
Demographic	Autistic individual
Response	Autism should be covered by insurance at parity with other conditions when it comes to psychoanalysis and its related forms (NOT ABA). Avoiding and processing trauma are essential to autistic thriving.
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response	As a late dx autistic person myself, I still have zero support from the government. Most autistic support ends at 18 which is a joke. Like we ever outgrow autism? We don’t. It is highly difficult to maintain a full time job due to zero accommodations in the workplace. It shouldn’t be so difficult to get on disability. I can’t even get insurance currently. I can’t afford adequate childcare for my autistic son. I need a qualified person to accompany us on public outings to help keep my son from eloping. The only thing covered is ABA and that isn’t a good fit. Parents of autistic kids desperately need more respite care on a weekly basis.
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Name	Laura Cosgriff, Lakewood
Demographic	Family member of an autistic individual
Response	Insurance coverage of speech services and occupational therapy services. Equitable access to and accessibility of the services. Improvement in school IEP processes. My son wasn't identified until he was 15 years old because school staff never told me how to request services/evaluation from the school. I had to learn about it from people outside the district. I received strange feedback on and off for several years. I couldn't make sense of it and would talk to my son about it. Most of it I didn't understand as medical. These vulnerable kids and their families are dependent on the feedback from school staff. My son suffered unnecessarily for several years. This could have been prevented if one staff member could have simply said, "your son needs to be assessed for x, y, and z. This is who and how you need to ask for it."
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Name	Laura Graham Holmes, Silberman School of Social Work, CUNY Hunter College
Demographic	Service provider, health provider, or educator; Researcher
Response	Autistic people are being seen across specialists, whether or not they have an autism diagnosis. The ways in which people move through the healthcare system to receive screening and diagnosis for autism and common co-occurring conditions or needs (e.g., sleep disorders, GI issues, eating disorders, anxiety, gender-affirming care) is of great interest. Education and case management services targeting specialists could help more autistic adults be diagnosed, and a robust screening and referral service among autism diagnostic clinics could help more autistic people be connected with other services. Focus on training and supporting people who can provide adult autism diagnosis could also increase healthcare equity. For example, there is a huge labor force of social workers who speak languages other than English who could be trained to provide diagnostic services, but many of them are unaware of that fact and unable to pay for additional training; how can we provide scholarships and support for them?
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Name	Laura Mansdorf, Mother of an Autistic Child
Demographic	Family member of an autistic individual
Response	It should not be a fight to attempt to receive services and assistance. The process taking so long, with so much paperwork that as a single parent, frankly I'm burnt out. There should be a easily attained standard level of care for all autistic people who require support. High quality ABA with focus on skill acquisition. Insurance has been a constant battle-- they deny our providers payment because my daughter also has Medicaid for Disability, so her primary insurance claims that Medicaid is the primary when it isn't. In regards to patient-provider services, I really just wish that medical doctors, police officers, EMS... would be better educated on how to compassionately and empathically assist autistic people. We've had an ENT want to hold my daughter down to do an endoscopy without anesthesia. In the ER in 2019, I had a doctor be persistantly rude when my daughter wouldn't give a urine sample or answer questions. She had the flu and a fever. I'll never forget the frustration and disgust on his face. In public school the school psychologist, when asked to give a Functional Behavioral Assessment, stated that "the function of her behavior is Autism" which is incorrect. The teachers keep her at the same level of studies for a year because they did not understand she knew the material they were teaching. I read stories of countless people tased and shot by police because they did not immediately comply. Since my daughter may elope, I constantly fear this may happen to her.
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Name	Laura Mewbourn
Demographic	Autistic individual; Family member of an autistic individual
Response	There is a pervasive idea that autistic children grow up into fully functioning adults. While that's clearly not the case, support services for "high functioning" neurodiverse adults are minimal. I would LOVE to seek assistance with executive functioning. I would love a competent psychiatrist that doesn't cost me $175 for every visit and meds that aren't $300/mo. I would love therapy to help me process my day to day life. I find connecting with other neurodiverse adults to be INCREDIBLY helpful, and while I have a resource available for that, I know many people do not. I think society has convinced itself the problem does not exist when the "problems" have actually just isolated themselves to a degree that they are no longer noticed.
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Name	Laura Saenz
Demographic	Autistic individual; Family member of an autistic individual
Response	#1 Eliminate ABA #2 put autistic people in charge #3 test all neurodivergent people for connective tissue disorders #4 test all hyper mobile people for neurodivergence #5 Create new specialty of connective tissue disorders so one MD can know about entire patient instead of subbing out to 10 other specialists. Which leaves us running our own healthcare. #6 re-educate entire medical system on what neurodivergence actually is so they stop infantilizing us and thinking we are not smart.
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Name	Laura Stoddart
Demographic	Family member of an autistic individual
Response	Care giving support in the home when cumulative stress activation impacts basic needs. Financial aid for parents who have to leave work to care for children in burn out or who cannot access education outside of the home. Raising the profile of PDA so that parents are taken seriously, believed and supported rather than being gaslit, isolated and shamed in society.
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Name	Laura thimen, Parent
Demographic	Family member of an autistic individual
Response	Proper care of behaviors, insurance, respite for parents it is 24 hours challenge, dangerous, more impatient behaviors unite, more group homes, better schools.
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual
Response	Even among professionals such as occupational therapists, there is still a lot of stigma around adults needing high levels of support, and they are often unprepared for addressing autism-specific issues, such as RRBs or cognitive rigidity, in adults in a manner that is compassionate and respectful. Professionals also need to be able to recognize and address the impact of trauma on autistic individuals. In addition, doctors and mental health professionals need to be prepared to communicate with patients with ID/LI, and to engage with them in a way that doesn’t further isolate or belittle them. In the background of all of this, there are still fundamental practical barriers to accessing autism services, such as questions of transportation and money, and difficulty even finding professionals who are willing and qualified to work with autistic individuals.
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Improving awareness of autistic needs or communication styles. I have been fired or ostracized for my assertive communication and it's so frustrating. Help teachers and employers create affirming spaces.
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Name	Lauren Agoratus, SPAN/Family Voices NJ
Demographic	Representative of advocacy organization
Response	Services and supports are essential regarding comorbid conditions and autism. As stated previously, a secondary diagnosis may necessitate additional educational or medical interventions. In addition, not all states have ABA certification requirements. Some ABA practitioners use forceful manual guidance, restraints, and other aversive techniques. As members of the NAMI (National Alliance on Mental Illness) national restraints committee, we found that aversive interventions are ineffective as behavioral modification and experienced as trauma. Indeed, the U.S. Department of Education noted that these techniques are not evidence based best practices . There are alternatives to ABA such as DIR (Developmental, Individual-differences, Relationship-based) model which is child-led, otherwise known as FloorTime. In addition, many students with autism could benefit from sensory integration (by a specially certified occupational therapist) and social skills which are related services under IDEA (Individuals with Disabilities Education Act), but school districts may not readily offer and families may be unaware that these helpful therapies are available in addition to the usual PT/OT/speech (physical, occupational, and speech therapy).
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Name	Lauren Dehler
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Insurance coverages for services, trainings for practitioners in the neurodivergent affirming model, awareness and training on PDA type of autism, support for Autistic folks with multiple marginalized identities, integrating physical health care with mental health care for Autistic folks, training medical doctors about the many co-occurring health conditions that Autistic folks have.
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Name	Leah Bennett
Demographic	Family member of an autistic individual
Response
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Name	Leah Goeres, Citizen
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Easier access (easier insurance coverage and HSA reimbursement) to compression garments and braces to help joint hypermobility disorders and POTS. Easier access to massage therapy (easier insurance coverage and easier HSA reimbursement) Early intervention on hypermobile children, initiating physical therapy and strength exercise programs early in life (screening in schools)
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Name	Leanne Maidment
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Leanne-Claire Civiletti
Demographic	Autistic individual; Other
Response	Medical care and insurance would be a start. I’ve tried to fill out the Calif rare genetic disease program paperwork. I can’t do forms. I’ve never been able to do forms. I personally need more help with getting my medical records and history of my prior diagnostic records in one system of care. I need help is amending misdiagnosis and MIs interpretation of what I did not say but is quoted in medical records. Lack of understanding and communication with doctors and staff. The energy I have to communicate with individuals lasts about one hour. I’m in recovery from that hour for weeks. I replay the interaction over and over trying not to blame myself for being denied accommodations for my communication difficulties.
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Name	Lee S.
Demographic	Autistic individual
Response	All of the above and, and I cannot write this in bold enough letters, SERVICES AND HELP FOR AUTISTICS ADULTS ACROSS THE SPECTRUM. Autism is not a condition that goes away, it is one that some of those who live with it have been able to cover up due to intellectual capacity to formulate behavior patterns in typical interactions with people around them.
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Name	Leeann
Demographic	Autistic individual; Family member of an autistic individual
Response	I've found in my experience that many medical providers carry outdated or misinformed information in regards to autism. Regular revisions and information should be shared with family providers/primary care providers as they are discovered and/or questioned. This, I believe, will help the issue of patients being misdiagnosed and/or overlooked.
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Name	Leigh Powell, NCSA TN Chapter
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Allowing Sheltered Workshops and Farmsteads/Alternative Housing models that are environmentally modified to support those with high acuity behavioral needs. That would not mean that they could not access the greater community when or as their behavior would allow, but it would ensure regular structure and social interactions for them in a much safer environment. There also needs to be options for 1 on 1 or 2 on 1 staff for those with high acuity needs. There needs to be specialized transportation options as well in order to keep driver and/or others safe.
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Name	Lekeisha Williams
Demographic	Family member of an autistic individual
Response	I don't know
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Name	Lesley
Demographic	Family member of an autistic individual
Response	We need help for when our kids age out of school programs. More insurance coverage, but mainly safe places for kids that are not high functioning. Any and all help will do!!
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Name	Leslie
Demographic	Autistic individual
Response
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Name	Leslie Lussier, Parent and Guardian
Demographic	Family member of an autistic individual
Response	People with profound autism face a crisis at age 22 when school services end. Many are left without programming or support. It’s been called the autism cliff at age 22. Please please guarantee and find day programs and residential as needed to provide needed supports for these people and their families. Human services workers need to make a fair wage and have a career path. Oversight is needed to be sure adult placements are safe. Video cameras need to be allowed everywhere including bedrooms to protect our profoundly autistic adults from neglect and abuse.
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Name	Leslie Welch, parent of adult with autism
Demographic	Family member of an autistic individual
Response	Well funded services where the actual person supporting the individual is well trained and paid and valued. These services need to be person-centered at all times and wrap around the person needing service. They should start at diagnosis and go until death with natural progressions built in.
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Name	letitia smith
Demographic	Autistic individual; Family member of an autistic individual
Response	access to public services to be offered when quieter and less overwhelming so actually get to use them. however this should not be shoehorned into ridiculously early or late times so as not to impact anyone else. that is not inclusive
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Name	Lewese, Child with ASD with PDA profile
Demographic	Family member of an autistic individual
Response	More training in schools and PDA support people at each school, maybe a classroom for those children . Better and quicker access to supports. In Home Care Support on average had a years wait time for help, NDIS, 3 months just for a planning meeting, then how much longer until funding given, and no one to support me in the applications or planning meeting prep, so better access to supports to enable parents abd especially the child get the support they need. More providers, and regulations on costs, so prices are more regulated. Currently my son is on multiple waitlists for therapy, which I cannot afford to pay for until finding approved. Standardised funding for certain conditions, cause if you don't know how to prepare, or what to ask for you just don't get it.
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Name	Lilja
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage of course. Insurance is terrible in the US. Fewer barriers to diagnosis for both children and adults. We waited 1 year and 6 days for my child's evaluation and that was considered fast. We need more diagnosticians, and they need to be are up to date with the many ways autism presents - especially in a person assigned female at birth. Far too many AFAB children who are autistic do not get their diagnosis or are misdiagnosed because they do not present like 4 year old boys. Far too many adults that slipped through the cracks as children do not get their diagnosis because they also do not present like 4 year old boys. Services cannot be accessed without a diagnosis. SSDI reform! No one can live on what the SSA expects disabled people to live on. Destigmatize Autism. Far too many people in the medical community disregard or infantize autistic people.
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Name	Linda
Demographic	Family member of an autistic individual
Response	All of the above should be employed
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Name	Linda , parent of adult with autism
Demographic	Family member of an autistic individual
Response	Better coverage from insurance for Occupational therapy to improve motor skills. Also, there need to be more developmental optometrists as there seem to be a lot of issues with eye tracking. My son has had difficulties reading and following the words on the page. We have done eye exercises to improve this. In general, programs for adults with autism suck and are just babysitting and wasted time.
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Name	Linda Gone , Parent
Demographic	Family member of an autistic individual
Response	Equity with services for individuals with severe and intense behaviors is nonexistent. Providers will not take them
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Name	Linda Jones
Demographic	Family member of an autistic individual
Response	Training and knowledge about PDA for service providers is the most important factor in addressing the needs of PDA autistic individuals and their families. Having a list of diagnostic criteria that is widely accepted among professionals as well as criteria for managing the disorder would change lives. It is extremely frustrating to reach out to professionals who are supposedly knowledgeable about autism only to find that they are absolutely useless, if not harmful in their ignorance. As a parent, being the one who has to inform providers about my daughter's needs is extremely frustrating and disheartening. We need real advice, real support and real treatment for our daughter.
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Name	Linda Kline, DDA SDS Family As Staff Direct Support Staff
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Permit family as staff to work over 40 hours per week whenever the need is there, I am my son's only staff and I can tell you he has way more than 40 budget hours per week and I do them all but only get paid for 40.
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Name	Linda Luxenberg, Parent and Professional
Demographic	Family member of an autistic individual
Response	Vermont is administrative heavy and direct service provider light. Furthermore, the administrators lack knowledge about autism.
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Name	Linda Schepis
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Automatic referral for evaluation and treatment by Occupational Therapy. I have yet to meet an autistic child and family who does not need this. Get rid of ABA (see all the mental and physical health harm it causes). Provide respite care to families that is not ABA-based. Help families navigate the process of entering preschool as soon as they turn 3 years of age.
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Name	Linda, Parent
Demographic	Family member of an autistic individual
Response	Private insurance needs to cover things that Medicaid does for those that can’t get Medicaid. IE therapies, pull-ups, diapers, OTC meds that help. Long waiting lists for help needs to be resolved and/ or at least decreased. Don’t make us jump through hoops and all kind da of red tape to get help.
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Name	Lisa
Demographic	Autistic individual
Response	Services that focus on bettering the individuals life such as life skills, job help, making sensory management more accessible. Currently behavioral management helps but many use it as an end-all. Many individuals both children and adults are left helpless when it comes to anything other than correcting behaviors. Sensory management can become more accessible with making items like noise cancelling headphones, weighted items, sensory tools etc more affordable and accepted in professional academic settings. Many individuals especially adults also do not have access to accommodations in higher education or professional settings. Accommodations that allow individuals to perform better help such as longer test times, staggered deadlines can help.
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Name	Lisa Graf
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Better access to disability services and better supports for employment.
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Name	Lisa Jeanne Geaf, 2023 LEND fellow
Demographic	Autistic individual, Family member of an autistic individual, Researcher, Representative of advocacy organization
Response	I would love access to services like house cleaning, Acupuncture and financial support to pursue and enjoy special interests. Improving quality of life is important.
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Name	Liv
Demographic	Autistic individual; Family member of an autistic individual
Response	reducing cost barriers by giving everyone free healthcare
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Name	Liz
Demographic	Family member of an autistic individual
Response	Insurance coverage, staff that understands epilepsy, not being ignored or treated like everyone else that may not have epilepsy with autism
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Name	Liz Martineau, Nashoba Learning Group
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	With urgency we must foster a much larger and more robust network of care providers in all states to address the care needs of this rapidly growing population of individuals with Profound Autism. In particular Adults with Profound Autism need funding and access to intensive supports. We provide these supports at NLG but incur a substantial financial deficit because funding doesn't contemplate the intensive needs of this population.
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Name	LizC12, Self
Demographic	Autistic individual
Response	More coverage from insurance for tests, for accommodation tools (walkers, therapies of any kind, etc). Better access to these tools, not having them cost more then, a minimum at best, a third of average rent in one of the most expensive cities in the US. Thousands should not have to be spent by a disabled person to have an accommodation or test or procedure that they need
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Name	Lori Hogenkamp, Center for Adaptive Stress
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Improving autism services for co-occurring conditions involves: Integrated Care Models: Collaboration among healthcare professionals to address both autism and co-occurring conditions comprehensively. Personalized Treatment Plans: Emphasize emergent allostasis by tailoring support to individual neurotypes and stress responses, considering the dynamic nature of each person’s health. Professional Training: Enhance training for professionals in systems-based approaches, emphasizing the complexity of neurodiversity. Develop holistic assessment methods for accurate identification of co-occurring conditions, respecting the interconnectedness of neurodiverse traits. Family and Caregiver Support: Provide resources, education, and support networks, acknowledging the crucial role families and caregivers play. Accessibility of Services: Ensuring all individuals can access necessary care, reducing financial and geographical barriers. Inclusive Education: Tailored educational strategies and support within schools for diverse learning needs. Mental Health Support: Adopt specialized therapeutic approaches that view common mental health conditions as part of the neurodiversity spectrum. Research Investment: Broadening research to include community-based studies on stress and quality of life, alongside top-tier research. Collaborative, interdisciplinary efforts are key, respecting self-determination and providing continuous support.
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Name	Lori, mother of 32 yo with autism
Demographic	Family member of an autistic individual
Response	First, I would say more funding needs to be made available. My daughter has been on a wait list since she was 18; she is now 32. Because she can "cook, clean, and bathe herself," no one thought she needed support, such as independent living skills. I guess they thought I would take care of all that, which I did, out of my own pocket with money I don't have. Insurance coverage - Medicaid - ugh. Why are there so many different Medicaid choices? If a doctor takes Medicaid, then they should be required to see any client who has Medicaid as their insurance coverage. Education of any/all health or human service providers. If a person with autism says they don't understand a question, don't just repeat the question - rephrase the question. Finally, even though we are on a wait list - no one follows up. I, as her mother and caregiver, have to make all the effort to get information about whether or not she might now qualify for assistance. In the meantime, I'm all she's got and, like many aging parents, I lose sleep at night wondering how she will ever adjust after I'm gone since no resources have been made available to her at this late stage in her life.
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Name	Louis
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Expanded services for adults as there is currently little support for autistic adults and their co-occurring conditions. More attention to how diversity impacts co-occurring conditions, especially the impacts of race, sex, gender. Insurance coverage through universal access for autistic individuals is necessary considering the number of co-occurring and conditions that complicate the lives of autistic individuals. Government sponsored Healthcare is a major step in the right direction, as is many autistic individuals utilize government support because of the disability that co-occurring conditions with autism causes. More education in the school system, doctors offices, and at a university level needs to happen in order for autistic individuals to receive proper treatment for the co-occurring conditions that often they have to bring to people serving them. Additionally, there needs to be more consideration in counseling for autistic individuals as currently many autistic individuals feel they cannot find a therapist who understands autism and co-occurring conditions. Another major change that needs to happen is better Social Security Programs, for income accessibility for autistic people with co-occurring conditions is attainable. Considering the high number of unemployment among autistic individuals, it is absolutely crucial that there be safety nets in place so that a vulnerable population is not marginalized further.
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Name	Louise
Demographic	Autistic individual; Family member of an autistic individual
Response	Reduced waiting times for assessment in the first instance. Post diagnosis support, advice and information, with practical examples of how to navigate the system of health and social care.
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Name	Luca Hardt
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	It currently costs approximately $3000 out-of-pocket to be officially assessed for autism. At the point when assessment is accessible, it is likely already more or less confirmed by a therapist that one is autistic. Talking to a doctor is very hard for me. Things that may be different about my body are all I know, so when the doctor asks if I have any questions or concerns, I draw a blank. I’m not given dialogue options in the exam room, so I have no idea what I need to bring up. I am not able to argue with a claims adjuster on the phone, I know they are attempting to take advantage of me and I know they are easily able to. Because of the unexpected charges I may incur at any step of the process of receiving healthcare, I am more likely to simply never see a doctor. Just making the call to make an appointment triggers a vasovagal response. I am not able to navigate the healthcare system, especially as a labeled disabled person. I was told I qualify for disability, but every attempt at seeking help has been in vain. Social workers don’t respond to phone calls, when I tried to do it myself, I was rejected. I was told that accessing disability would leave me unable to marry my partner and that a case worker would have to monitor me to ensure I was really disabled (hell). I stopped pursuing help, because I could not handle the social, hierarchical, performative process of being helped. There is an overwhelming impression of the system wishing I simply did not exist.
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Name	Lynn Cass
Demographic	Family member of an autistic individual
Response	It would help to make it part of the priority to address the individuals on the more severe end of the spectrum; those with significant behaviors, nonverbal, not candidates for competitive employment, those who require 24/7 specialized care.
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Name	M
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	access to accommodations
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Name	Mabel Thomas
Demographic	Family member of an autistic individual
Response	All of the above.
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Name	Maci Barbour
Demographic	Autistic individual
Response	Equitable access to public transit, pictures at public offices/facilities for nonverbal communication, insurance coverage of adult autism testing/services
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Name	Madeline Lodge
Demographic	Autistic individual
Response	Insurance coverage, accessibility and access to services, and lower lights and less sound in their areas to make autistic people more comfortable.
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Name	Madison
Demographic	Autistic individual
Response	Easier access to therapists educated on autism, more resources for those with autism seeking to get an education, more support in the workplace for autistic adults, assistance with medical paperwork/insurance/logistics
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Name	Maegan Hayes, Social Science Specialist
Demographic	Autistic individual; Family member of an autistic individual
Response	Education of stigmas associated with autism and how to utilize support if colleague or participants are struggling.
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Name	Maeve Sherry, Pan-End-It!
Demographic	Autistic individual
Response	Education for healthcare providers about how autism may present in different ages, genders, support needs levels, etc. Healthcare providers often perceive me as deceptive and I frequently experience discrimination in emergency medical settings because they profile me as someone who is "drug seeking."
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Name	mags, diagnosed autistic
Demographic	Autistic individual
Response	Insurance often won't cover treatment I need because the treatment is for my comorbidities, not directly my autism. That just isn't good enough.
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Name	Maija Vance
Demographic	Family member of an autistic individual
Response	First off, just recognition of PDA as something real. And educating schools and healthcare providers of this profile in order to create interventions that actually help a PDA child and the family, such as much greater flexibility within a school regarding attendance. Once a child reaches burnout and can't attend school, and a parent has to stay home with them, support for the family during this time would be helpful. Insurance coverage for service dogs who could accompany a PDA child at school would be excellent. Financial assistance or home services for the family of a PDA child in burnout would help greatly.
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Name	Mara LaViola
Demographic	Family member of an autistic individual
Response	Easier access to meaningful compensatory services due to late identifications or inappropriate educational instruction and/or environments. Special education needs to go beyond the age of 22. Insurance coverage for brain-based sensory losses like CVI and auditory processing disorders. Adult services that are more than baby-sitting and provide meaningful opportunities to continue to learn, engage in the community, and make joyful and purposeful contributions. Re-vamping of our criminal justice system so that it better understands the manifestations of autism and its co-occurring disabilities. Long term supports and services that pay commensurate to the level of training needed to ensure purposeful, joyful, and meaningful lives where learning, growing, and maturity are expected and nurtured. Creating meaningful employment opportunities for the neurodiverse at all levels of support. Physicians who truly understand the disorders and appropriately advocate for the needs of their patients. A meaningful governmental response to the tsunami of youth with autism who will soon exit our public school system with nothing to do and where regression is expected because there are no long term supports and services. Support for their families who often have to give up on employment opportunities or social connections because they are left to care for their family members, extending the cycle of poverty beyond just the individual with autism themselves.
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Name	Marcella Schieffelin, Member Colorado Developmental Disabilities Council
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Inctease the length of time a provider is allowed to care abd treat for an individual. The individual has complex needs that cannot be addressed in one short visit (typically 20 minutes at the most). The more complex the individual, the more time should be allotted for care. Transportation to appointments is already a barrier and if a person needs to return for an appointment because not everything could be addressed at one appointment, there is a lack of continuity, the risk for more problems later and cost to the individual, family, and society increases. That makes no sense.
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Name	Maresa
Demographic	Family member of an autistic individual
Response	Insurance coverage could be improved, as well as accessibility of services, especially in more rural communities.
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Name	Mari Savickis
Demographic	Family member of an autistic individual
Response	More funding for a high functioning education system. It is broken. It feels like glorified daycare. These educators are severely underpaid, they are under-staffed and the populations of special needs kids is only growing.
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Name	Maria Garritt
Demographic	Service provider, health provider, or educator
Response	1. Mental health providers well-versed in Autism. 2. More community activities directed to people in the Autistic Spectrum and with co-occurring mental health conditions. 3. More staff in agencies providing services for population in the Autistic Spectrum 4. More resources/staff for non-English individuals and their families.
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Name	Maria Maiorano
Demographic	Service provider, health provider, or educator
Response	In my opinion, like most things in life, everything can be improved. The more we continue to learn , understand, and truly accept individuals with autism, they will continue to teach us how to improve ways we can help them. I think one way is to continue to ask those individuals that can communicate and their families how we can service them better. Continue to recruit , train and learn new ways through professional learning communities online and in person. If diagnosed through early intervention, I believe definitely giving them equitable access to same aged peers to learn better communication skills when they are not that far behind their peers so we could help improve and increase skills needed for a lifetime of learning. This will help us build better programs within their schools and communities, and create empathy and acceptance among everyone.
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Name	Mariana Romano
Demographic	Family member of an autistic individual; Other
Response	For school-aged children, helping learning institutions understand how these co-occurring conditions affect children's ability to function in a system that is biased toward "neurotypical" kids, but that inability to function does not mean the student is intellectually incapable or "lazy." Research also needs to challenge itself to discover best practices to elicit the gifts these ASD individuals have. Also, perhaps if our systems worked differently, some of these co-occurring conditions might "disappear" or at least be reduced in severity.
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Name	Mark Byam
Demographic	Other
Response	Insurance Coverage, accessible services for everyone
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Name	Marnie Morneault, University of Maine Center for Community Inclusion and Disability Studies
Demographic	Service provider, health provider, or educator
Response	Service specific respond to people with Autism. Plan development to address access needs, needs related to patient/provider interactions to support each person as an individual.
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Name	Martha Gabler, Mother and Legal Guardian of nonverbal adult son with severe autism
Demographic	Family member of an autistic individual
Response	People with autism need much more coordination of care between medical, behavioral (ABA), and educational professionals. Nothing like this exists and, again, parents have the extremely difficult burden of trying to create a coordinated system of care from these disparate fields, each one of which has unique obstacles that need to be overcome. Health insurance codes need to be modified to address problems such as the fact that many people with autism need anesthesia to undergo dental treatment; many people with autism cannot tolerate shots or invasive screens and may need sedation or some other type of diagnostic process. Please see: Pinals, Debra A., M.D., Hovermale, Lisa, M.D., Mauch, Danna, Ph.D., Anacker, Lisa, M.D. “Persons With Intellectual and Developmental Disabilities in the Mental Health System: Part 1. Clinical Considerations.” Psychiatry Online, 4 Aug 2021. https://ps.psychiatryonline.org/doi/10.1176/appi.ps.201900504. Accessed January 10, 2024. • People with intellectual and developmental disabilities (IDD) often have co-occurring mental health conditions. • Getting treatment for co-occurring IDD and mental health conditions typically requires accessing bifurcated care across two siloed care systems. • Even though the lack of integrated care options for individuals with IDD and mental health conditions and the need for a skilled workforce have long been recognized, system structural problems and professional training gaps persist.”
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Name	Mary
Demographic	Family member of an autistic individual
Response	My observation as a mother of 42 years of a son on Spectrum is that he is "normal" to himself, so labeling him otherwise is not of service to him.
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Name	Mary Jane Reis, Parent
Demographic	Family member of an autistic individual
Response	Housing, job support that takes into account the limits places by autism and resulting comorbidities (for example, job coaches that can help with anxiety, housing that is on public transit, etc). Maybe somebody should also research the positive impact of work - and how the social support system sometimes undermines the ability of disabled people to work due to the threat of losing government benefits. The income limits now in place seem designed to keep autistic people in poverty or to encourage them to work minimally. Yet I would bet, should studies be done, that working autistic people fair better than those who are home alone collecting their SSI. My daughter might be better off financially if she worked minimally and collects her dad's SS but her mental health might be better if she worked - but then she might lose her benefits. I know this is a congressional issue, but seriously something needs to be done.
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Name	Mary Jo Cooper, Bay Cove Human Services & Boston Architectural College
Demographic	Service provider, health provider, or educator; Other
Response	community education including the medical system and school systems. trauma informed approaches including trauma informed design for physical spaces Assistive technology
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Name	Matthew Janicki, National Task Group on Intellectual Disabilities and Dementia Practices
Demographic	Representative of advocacy organization
Response	We recommend a comprehensive and targeted program of research for advancing our understanding of the intersection between autism and dementia. This should include comparative studies with the general population and individuals with other intellectual and developmental disabilities. Research is also needed to enhance our understanding of the cognitive aging trajectory in individuals on the autism spectrum, factoring in variables such as intellectual functioning. Investigating prevalent types of dementia among individuals with autism is essential, acknowledging the varying degrees of risk associated with the underlying neuropathology of autistic behaviors. To improve research quality, methodological enhancements such as better research designs, larger sample sizes, and representation of diverse groups, including older adults, are crucial. Concrete recommendations include extending autism research from childhood through the lifespan, establishing a dedicated funding stream for research on aging adults with autism, and on the value of providing education for both paid and unpaid caregivers. Recognition of the disproportional funding for childhood versus adult autism research underscores the need for ongoing advocacy and resource allocation to meet the evolving needs of this population across their lifespan.
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Name	Matthew LeFluer , Vermont Legends of Cities And Towns
Demographic	Autistic individual; Researcher; Representative of advocacy organization
Response	Equity and equality access for individuals with autism communities of color with autism other marginalized communities with autism to help address systemic barriers of culture of a system-wide privilege systems of white People researchers institutions and other factors of challenging barriers
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Name	Mattie Wentz
Demographic	Autistic individual
Response	a more organized medical system would be so helpful. i like the MyChart app and it would be more helpful if more providers used it AND if it presented info from different provider groups (virtua, penn, etc) im the same place so all of my medical info is easily accessible
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Name	May
Demographic	Family member of an autistic individual
Response	- How can the system be Quicker to deliver the services?
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Name	Meg Collier
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Equitable access to Healthcare and behavioral healthcare services with an ANTI-CARCERAL lens - we DO NOT need to be institutionalizing children and adults or involuntarily committing them for ASD. I think more education addressing the SPECTRUM of Autism as opposed to the non-verabal stereotypes are important , especially as more adults are diagnosed. Education on how to self-advocate and legal resources for taking action against discriminatory real estate agencies. landlords, businesses and employers
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Name	Megan
Demographic	Service provider, health provider, or educator
Response	Limits to Medicaid, medical professionals guiding care not the government. Education systems that work for all Autistic people, not just those with access to special schools. Better trained and more accessible Psychiatrists to offer specialized services, not just "let's try this new drug", so pairing with skilled Psychologists as a proper/effective treatment style. Medical appointment time limits prevent families from getting the time they need to really assess the individual within their communication style. 15 minutes for a person who needs time to process questions and responses is not enough, so relying on the support person to answer for them means they aren't advocating for themselves.
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Name	Megan
Demographic	Family member of an autistic individual
Response	More options for covered support services covered by insurance. Covered family therapy and parenting training. Better in school trained individuals.
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Name	Megan Arbour, PhD, CNM, CNE, Frontier Nursing University (and a mom)
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	A school system that does not "other" autistic people through pull-outs and shaming of behaviors. Primary care provider increased education regarding developmental disabilities. Alternatives to ABA. Acceptance. Unschooling. Parent and caregiver support.
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Name	Megan McLaughlin
Demographic	Family member of an autistic individual; Researcher
Response	All of the above. But a greater emphasis on teaching budding physicians to understand autism and autistic people would be the most important. Only five years ago my daughter was incorrectly diagnosed with a personality disorder, simply because a psychiatrist didn't believe she could possibly be autistic (she had been diagnosed at age 3, and rediagnosed repeatedly afterwards).
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Name	Megan Mitchell
Demographic	Autistic individual; Family member of an autistic individual
Response	Accessibility to services. When you speak another language you can get an interpreter on the line when trying to access government services, you can also get interpreters for having a hearing disability. There should be aids that can be called onto the line for people with intellectual disabilities and autism who are trained to d explain it in a way the person can understand. This small change would hugely help autistic people get access to services and healthcare.
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Name	Megan Tomhave, PA-C
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Training medical professionals in identifying level 1 autism / late-diagnosed autism especially in AFAB individuals Training employers in autism accommodations (focus on sensory accommodations, like dimming the lights, ability to wear earplugs, noise-cancelling headphones, working from home) Training teachers and educators in all of the above, putting autism education in schools
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Name	Meilin Zarnitsyna, Chicago Counseling Associates
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Equitable access to/accessibility of services Centering autistic perspectives / educating providers on co-occurring conditions (specifically helping providers understand the prevalence of co-occurring conditions so that they don't dismiss everything happening with a patient as being caused by autism) Insurance coverage
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Name	Mel Houser, M.D., All Brains Belong VT
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	The deficit-based medical model of autism is itself a systemic barrier to health equity. My medical training focused on the triad of impairments and a rote list of co-occurring conditions without anyone zooming out to wonder why. Medical education needs to include the knowledge, skills, and attitudes required to provide neuroculturally competent care. Particularly now that we know about the constellation of intertwined medical conditions – which is NOT part of standard medical conditions – these physiological changes need to become part of medical education for all healthcare professionals. Recognizing that many Autistic patients are not identified as such, recognizing these physiologic patterns may even contribute to earlier identification of Autistic people. As mentioned above, with support from the Organization on Autism Research and by the HRSA under the Autism Intervention Research Network on Physical Health (AIR‐P) grant, All Brains Belong’s free resource - Everything is Connected to Everything: Improving the Healthcare of Autistic & ADHD adults - includes evidence-based guidelines for primary care clinicians: https://allbrainsbelong.org/clinician-resources Moreover, given that Long COVID risk is higher for Autistic people, absence of a universal mask mandate in healthcare settings is a clear systemic barrier to healthcare access. When we make patients choose between “health” and “healthcare,” everyone loses.
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Name	Melanie Del Ponte
Demographic	Family member of an autistic individual
Response	Insurance coverage, support for after-school and school programs, daycares, etc. many daycare programs will not accept a child with autism, and are unable to care for him- this is a huge gap in services for autistic children. Insurance coverage and additional special needs training for everyday pediatricians would be great as well.
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Name	melany hansen, parent
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	I designed surveys for a living for awhile (and i have 2 masters degrees) . This is confusing to me. No idea what you are asking. we have services and insurance.
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Name	Melissa
Demographic	Autistic individual; Family member of an autistic individual
Response	Doctors that listen and don’t infantilize us and just tell us we’re crazy or just anxious. More access to help and more doctors. If you’re diagnosed autistic you should automatically be tested for anything that is considered a co-occurring condition.
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Name	Melissa Foster
Demographic	Family member of an autistic individual; Other
Response	They three majoy issues that I see as a self direction broker and mom of an autistice child are the following: -access to insurance that will cover additional therapies as self-direction does not. I have very few clients with good insurance to help cover the cost of things such as aba and behavioral therapy. - After school care for special needs individuals. Currently in rochester there is a waitlist and the providers are currently on the east side of rochester only. This is why so many families have one parent that stops working in order to provider after school care. - reliable transportation to and from work or out in the community for special needs adults.
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Name	Melissa McKenzie
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	A primary area, especially for young children is with education. Many IEP and 504 supports do not provide helpful accommodations that children need to engage with the learning process.
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Name	Melissa Sanchez
Demographic	Family member of an autistic individual; Other
Response	Insurance coverage. My insurance won’t even screen me. I am fairly certain I have autism. I think they completely missed it when I was a child. Because I’m not medically diagnoses, I do not qualify for services or accommodations that would make my life so much more tolerable.
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Name	MG Chappell
Demographic	Autistic individual; Family member of an autistic individual
Response	I feel that there should be more supports and services available in rural locations. There is so little mental health support in this area that it is very difficult to get care and therapy, including travel costs.
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Name	Mia
Demographic	Autistic individual
Response	More support specific to autistic adults would also be much appreciated, as a lot of the current help available is catered only to kids. Service dogs can be helpful both for autism and many co-occurring conditions like PTSD, anxiety, panic disorder, and some physical health problems. I would love to see them become more accessible, as right now they are very expensive and difficult to come by. More education about autism in mental health facilities. So many autistic people struggle with mental health, but so many providers do not adequately understand autism. Autistic people also tend to need a different type of therapy than neurotypicals, and treating them with the same therapy could lead to more mental health issues. Also adequately educating professionals on what co-occurring conditions are commonly seen with autism could be helpful getting more people a diagnosis as well. More intersectionality in services and research would drastically improve quality of life for many, as leaving women/POC out of the conversation allows for so many to go mis- or undiagnosed, allowing them to acquire likely preventable co-occurring mental health conditions. Insurance coverage for psychological testing would make it so much more accessible for so many people. I paid around $10,000 for 2 assessments over my life, both weren't covered by insurance. Many never pursue a diagnosis because of the high price tag.
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Name	Michael
Demographic	Autistic individual
Response	Anything to help with maintaining employment and an income. Legal protections a working class person has access to, not what wealthy folks buy. Access to medical care and counseling...I want to say especially for adult males.
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Name	Michael Confoy, parent of child on the spectrum
Demographic	Family member of an autistic individual
Response	Insurance doesn't address the existence co-occurring conditions as something to address, just each individual one. Also, insurance is difficult to get coverage for high performing individuals on the spectrum.
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Name	Michael Raney
Demographic	Autistic individual; Family member of an autistic individual
Response	Ways to improve understanding of atypical presenting autism within schools and other places that diagnose autism. For example, my child's school evaluation disregarded autism because he can make eye contact. That is an outdated belief which seems to still be disturbingly common, even among providers who should know better.
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Name	Michael Rathbun
Demographic	Autistic individual
Response	For autistic adults, the ability to detect autism without years of effort and thousands of US$, after which some reasonable accommodations should be discussed.
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Name	Michaela
Demographic	Autistic individual
Response
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Name	Michelangelo molina
Demographic	Autistic individual
Response
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Name	Michele Brady
Demographic	Family member of an autistic individual
Response	Insurance needs to cover treatment for these conditions and we need more providers who specialize in these conditions in the autism population.
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Name	Michele Lappin, The Center for Exceptional Families
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	I think there needs to be more training and resources to help the medical community look past a patient’s Autism as the reason for all their ailments. For example our Autistic son was irritable and throat clearing for a year. Our son could not communicate what was wrong. We went to numerous doctors who said it was because he was Autistic and stimming. I knew something wasn’t right and took him to an ENT. Our son had tonsil stones which were irritating and causing him to constantly clear his throat. He had his tonsils taken out and he stopped throat clearing and was less irritable. This is the norm in the Autism community. Similar things have happened to everyone I know who is Autistic or has an Autistic child.
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Name	Michelle Goldberg
Demographic	Family member of an autistic individual
Response	Make it more comfortable for someone with autism to be examined and being treated by a doctor.
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Name	Michelle Grochocinski
Demographic	Other
Response	Providers should be trained to recognize and, if appropriate, diagnose hypermobility and associated disorders, including EDS.
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Name	Michelle Harris
Demographic	Family member of an autistic individual
Response	Options for those who are not high functioning and those who are not from wealthy families - what happens after 21? Services are woefully inadequate, challenging to navigate. Services must include medical/health but also allow for these young adults to maintain and continue to develop life skills - why would it all stop at 21? The insurance system in this country is so broken, I wouldn't even suggest coverage. We need infrastructure for our more dependent individuals - in education, vocation, health and welfare.
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Name	Michelle Jace
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	A massive training effort needs to take place across healthcare, government, law enforcement, education, corporations, and communities lead by autistic people who are also practitioners. This unique perspective will address the realities of their field and expertise while also taking the autistic perspective into account. Autistic teachers and professors should lead trainings on teaching autistic students while autistic doctors are given the floor at medical conferences to speak on the unique qualities of trauma and sensory processing differences in their autistic patients. Financial aid and disabilities services shouldn't have so many hoops to jump through to prove that a disabled person is in need of support. Since the US is a country that does not provide healthcare to their citizens, it is incredibly difficult for many individuals to have the funds to not only seek a diagnosis, but also continue paying for the care needed. As more research comes out supporting the accuracy of self diagnosis for autism spectrum disorder, financial and community supports should be available to autistic adults without a formal diagnosis.
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Name	Michelle Linn, Parent, Provider
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Quit calling them co-occurring conditions when there is no science to distinguish between the disorders biologically. Acknowledge we don't really know what autism is and therefore need a significant research effort to identify autism and its cause. All parents providing care for their adult children with profound autism should be compensated at the rate for nursing home/institutional level care until such a time that adequate, high quality residential care and treatment are available. Individuals with profound autism need high quality, 24/7 care across their lifespan. Society isn't currently paying this high cost, the burden is laid on families at the expense of their livelihoods, quality of life, and their own health. It is a heartbreaking tragedy that requires an effective and adequately resourced and organized response (something we have never had).
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Name	Michelle OConnorTeklinski
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Appropriately trained and staffed clinics offering timely access to diagnosis and services. We also need a safety net for families dealing with physical aggression and not sending autistic adults to the ER or inpatient psych
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Name	Michelle Skigen, M. A.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	See my earlier comments.
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Name	Michelle Surgenor
Demographic	Family member of an autistic individual; Researcher
Response	Patient/provider interactions, equitable access, appropriate accommodations, more advocacy services
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Name	Michelle, LMFT in California
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Equitable access, increase/development of resources for autistic adults who don't fall under conservatorship or supported care programs (those who function in life ok), systems issues, healthcare inequity
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Name	Mikol Bailey
Demographic	Autistic individual
Response	Equitable access above all. Accessibility to even receive diagnosis is honestly a huge barrier. People who weren't diagnosed as children also basically have few options to access diagnosis and care as an adult.
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Name	Mimi Rankin Webbq, Parent of 3 with Autism
Demographic	Family member of an autistic individual
Response	Mandate insurance coverage for ALL ASD related services for ALL ages.STOP making school IEP/504 qualifiers to access social security & waiver services for the disabled when they've valid medical dxs! Mandate schools be required to accept medical dx's on parent request for sped/iep/504 help-refusing medical dx's is HARMING students! Service system is broken if you require school documents to access medical services. My own daughter isn't considered severe enough to need iep/504 thru school because she is straight A(ocd trait presentation of an autistic female who cannot allow herself to fail/be less than perfect) @17, she has spent the past 2yrs with severe anxiety /self injurious behaviors IN CLASS due to extreme sensory overload & stress caused by schools refusal to acknowledge her medical dx of asd, anxiety & epilepsy w/severe sensory disorder on file since age 4 She was institutionalized for suicidal ideation due to the cutting self in class when it was ASD TRAIT PRESENTATION School wrote it off as emotional disturbance & enabled bullies to continue bullying Hospital had less knowledge on asd than the school & did nothing but enabled bullies instead of helping!Training on all levels would have resolved this
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Name	Mina
Demographic	Autistic individual
Response	ASD makes medical settings difficult. facilities are not sensory-friendly. Bright lights, loud noises, and chemical smells cause overwhelm. Social anxiety makes communication harder. We also respond differently to pain. Doctors do not understand us, hence our worse healthcare outcomes. We need PCPs who specialize in caring for neurodiverse patients. Their practices could accommodate sensory needs, give patients more time to communicate with their provider, and help them schedule referrals or tests. There is also a lack of therapists trained for autistic patients. Let alone co-occurring conditions, mental health models fail to account for interactions between conditions. Disability services fail to meet our needs. Access requires repeated communication and executive function demands, unfair rejections, and lengthy appeals. All of these are hard normally but nearly impossible in a crisis, when support is crucial.
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Name	Minela Fernandez MD
Demographic	Service provider, health provider, or educator
Response	Knowledge of these types of feeding disorders and how severe they can be/ get. And ways to treat them before it gets to the point of needing a GTube. Ie, Parents not catering to the child from the beginning, and NOT seeking help early. Gen Practitioners and pediatricians alike do not refer early enough, and just call it "picky eating," thereby delaying the parent seeking help, until it is too late and more difficult to treat.
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Name	Missy Garcia
Demographic	Autistic individual; Family member of an autistic individual
Response	Mental health centers that specialize in this area and are subsidized to be affordable. We have places like this for sexual assault victims, we need places like this for people with autism. It’s a mental condition that cannot be changed. Therefore, we need the resources to learn how to deal with it for both people with autism and everybody else.
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Name	Misty Cameron
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	All of the above. It should not be a privilege of those with money or great insurance to get adequate diagnosis and treatment. Providers are not properly educated and do more damage in the end by not assessing correctly or even entertaining a patient’s concerns that they may be autistic. Women are constantly misdiagnosed - and incorrectly medicated - for things like bipolar disorder and BPD, which can have devastating consequences to them and their families. Educate your providers better. Require them to have training that is backed by CURRENT research before they can even think about assessing for autism. Include ADHD in these provisions and restrictions. Require rheumatologists to be educated on the overlaps and comorbidities.
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Name	Molly
Demographic	Family member of an autistic individual
Response	We need more great providers who are in network for services such as occupational therapy and speech therapy. It seems more and more of the best providers are dropping insurance since insurance is not adequately paying them.
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Name	Molly Schenker
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	Extensive service coverage for services other than ABA. I believe a big reason parents like ABA so much, despite that it is not favored in the autistic community, is that it provides insurance-covered respite and daycare for parents who have no other choices. Autistic kids are often removed from daycares and private preschools, or these agencies encourage parents to remove them due to behaviors or lack of training, and parents have nowhere to turn.
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Name	Monica Allen
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I touched on some of this already and will add more here: -equitable and affordable access -trauma-informed care -culturally-competent care -anti-ableist care -anti-racist care -insurance coverage for all needed specialists, therapies, medications, sensory tools, and more -communities and states need Autism offices with more funding and staffing to help with connecting to services, providers, peers, work opportunities, and more -telehealth coverage must continue -a better understanding and awareness of COVID and long COVID in the Autistic community, including access to testing, vaccines, high quality masks
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Name	Moriah Adamick, parent of Autistic child
Demographic	Family member of an autistic individual
Response	Across the board, providers, educators, service systems, insurance coverages, support services are not educated or informed about the PDA condition. We need more services in terms of educational formats that increase autonomy for PDA autistic individuals, respite support for families who often have to pour all efforts and attention into regulating the nervous system of their PDA family member, widespread belief and understanding of the condition and affirmation of the fact that there are many different kinds of brain-wiring and minds in the world.
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Name	Mother of an autistic daughter
Demographic	Autistic individual; Family member of an autistic individual
Response	-funding for transportation to appointments -ability to choose private effective alternative schools using public school funding (school choice) for disabled/autistic people -- ease of doing this without requiring lawsuits -- not forcing disabled/autistic people to go to educational institutions using a 150-year-old model (requiring 6-year-old children to sit still at desks and listen to lectures) or use pullout services that shame students and are ineffective -holistic model rather than forcing autistic people to go to interminable different services (OT, speech therapy, social skills groups, etc.) -services provided in nature (outdoor schools) -- also based in gardening/farming/practical life skills -- time spent outdoors is more effective at reducing sensory loads and has other benefits that are dismissed by traditional services -abandoning behavioral techniques, listening to autistic adults about the effect those techniques have on them, using self-driven methods that tap into internal motivation, a scaffolding, connection-centered, attachment model rather than punishment/rewards (treating disabled people like dogs)
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Name	Myles Davis
Demographic	Autistic individual
Response	easier insurance coverage and appointment scheduling, better training of therapists and autism professionals to better engage with autistic people, and easier access to services for marginalized communities
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Name	N Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased supports for autistic adults is a major need. Often autistic treatments only focus on children, and only focus on "behavioral issues" rather than addressing underlying causes of those issues. For example, you cannot treat toe walking in an autistic child without also addressing issues with EDS, chronic pain, vestibular problems, or potential muscular issues. We need fewer behavior based treatments and more treatments focusing on treating the whole body, and approaching the patient with the assumption that there is very often a physiological reason for many symptoms that are assumed to be behavioral.
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Name	N/A
Demographic	Autistic individual
Response	Insurance covered Counseling counseling is a good way to learn how to cope and adjust to everyday life with autism as long as the counselor is educated. Providers need to be educated on autism to be able to fully understand and care for their patients. Disability for those who struggle with working and doing everyday things with autism not just high spectrum autism but low spectrum as well, being self aware and autistic is just as hard as being unaware. And treating autistic people like people and not like disabled individuals or children, personally I believe that organizations like autism speaks has the right intention but is actually doing more harm than good because of the lack of education and understandment of the spectrum that is autism.
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Name	Nancy
Demographic	Family member of an autistic individual
Response	Biggest thing. Access and accessibility to day and residential services for under and over 22 years old citizens. Adult day programs are not taking new clients that turn 22, they can not service prior clients (after Covid). We do not know where to turn. There is No sign that things will get better. These are citizens born in the great USA. Start revamping the entire system. The American with Disabilities Act mandates this
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Name	Nancy D Miller, VISIONS/Services for the Blind and Visually Impaired
Demographic	Service provider, health provider, or educator
Response	Screen for co-occuring conditions and make sure appropriate referrals are made into the other service systems that are often siloed. Even within a state, the services networks for people with disabilities do not always cross refer or know about each other. Strengthen the requirements to assess and refer for whatever training the individual will benefit from.
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Name	Nancy Hauprich
Demographic	Family member of an autistic individual
Response
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Name	Nancy Williams
Demographic	Family member of an autistic individual
Response	Access to better mental health treatments that are evidence based, beyond ABA. Connection between behavioral health services and developmental disability services. They act very separately in AZ currently and the disconnection is not serving individuals well.
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Name	Naomi Mittet, Circadian Sleep Disorders Network
Demographic	Family member of an autistic individual
Response	The first helpful support would be for sleep specialists, neurologists, and those who work with the autistic community to be aware of Non-24 Sleep-Wake Disorder. Unfortunately circadian rhythm sleep disorders are still not fully understood by those who it would help to know. After there is more knowledge and acceptance about Non-24 (especially in sighted people), the next step is easier access to getting diagnosed. Insurance coverage for an actigraphy device, as well as time off from work and/or school so that the patient can free-run with their sleep in order to get a true reading of their sleep cycle. Once diagnosed, schools and workplaces need to allow accommodations for those with Non-24. Flexible work and study times, allowing for some days to be spent at home when sleep/wake time doesn't follow a typical 9-5 day. Video recording of classes for classes or offering all classes online would also be beneficial.
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Name	Natalie
Demographic	Autistic individual; Family member of an autistic individual
Response	Patient-provider interactions. I have been refused ADHD medication because I didn't want to see a new therapist. I already had a diagnosis and previous therapy. I was only filling one month of medication per year, and my dose is low. I have no history of drug abuse of any kind. The doctor had no reason to try to force me into mental healthcare over this. I'm autistic. I don't want to meet a new therapist who probably knows little or nothing about autism. In this case, I didn't even want to tell the provider that I'm autistic. I almost never tell because it can only make the interaction worse, not better. Doctors aren't really going to do anything with that information, so why bother?
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Name	Natalie
Demographic	Autistic individual
Response	Insurance coverage, low income options, cheaper diagnostic appointments and tests
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Name	Natalie , Woman
Demographic	Other
Response
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Name	Natalie Mason
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Access to NDIS and cater supports made easier and user friendly.
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Name	NaTasha Turley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	More accessible services and less bureaucracy around what is considered “medical necessity “. Additionally, we just need more providers as well as training for human service personnel in general who may be interacting with our community. Most individuals in the broader medical community are not well trained and how to support autistic patients in their care.
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Name	Nathan Blenkush, The Judge Rotenberg Educational Center
Demographic	Service provider, health provider, or educator; Researcher
Response	Individualized Treatment is the key to effectively addressing severe self-injury and aggression exhibited by people with autism spectrum disorder. Unfortunately, decisions about how to address clinical problems are increasingly made by rule or legislation instead of by clinicians, families, and individual patients. Treatment refractory self-injury and aggression are real clinical conditions that often require extraordinary management procedures including long-term hospitalization, residential treatment, and restrictive interventions with significant side effects. Remarkably, the very existence of these patients has been questioned by advocacy groups and ideology derived from proponents of positive behavior support and other advocacy groups. These assertions that all problem behaviors can be treated effectively with psychotropic medication or non-restrictive behavioral interventions are false and patients with these conditions suffer because such assertions.
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Name	National Council for Mental Wellbeing
Demographic	Representative of advocacy organization
Response	For children and youth, access to health care providers that have specialized knowledge in addressing specific needs of people with autism and co-occurring mental health conditions may not always be readily available. For example, it can be challenging to find a developmental pediatrician who specializes in autism and co-occurring conditions, and there is a well-documented workforce shortage of child psychiatrists. There is also a significant shortage of applied behavior analysis (ABA) therapists, which is considered the gold standard treatment. Additionally, barriers to accessing care can often include a lack of resources and adequate insurance coverage, lack of awareness of autism, stigma, and lack of linguistically appropriate resources. Furthermore, given potential impacts from other co-occurring conditions such as sleep difficulties and gastrointestinal considerations, the intersection of co-occurring conditions should be considered in providing quality, responsive behavioral health care that meet the needs of individuals in this population. Challenges can further arise if an individual is prescribed multiple psychotropic medications which can result in a drug interaction and metabolic syndrome. The need for collaborative care emphasizes the importance of care coordination and integration across a multidisciplinary treatment team.
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Name	Nele Van hemelen
Demographic	Family member of an autistic individual
Response	Professionals who know that PDA is a form of autism… getting it in the DSM
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Name	Nellie
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization; Other
Response	More system resources and more services being offered that are covered by insurances including medicaid! Less municipal and county barriers on access to these services and resources. More services, less paperwork and requirements.
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Name	Neoli Hernandez
Demographic	Autistic individual
Response	Equitable access. Right now late diagnosis for adults is incredibly difficult to afford. Diagnosis questionnaires discriminate against neurodivergent women & non binary people. Doctors do not have access to up to date research, practices and the resources they are told to suggest are aimed towards children. Nothing is really covered for autistic adults when it comes to services offered by charities either. Very difficult to get help or get therapies to help on the journey towards autonomy if they are inaccessible & unaffordable. It is a harmful cycle and can be very traumatic.
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Name	Nicholya Crockett
Demographic	Family member of an autistic individual
Response	I think it would be really helpful for certain conditions, such as PDA to have more awareness so that better services for this nervous system disorder can be made available to those who need it. So many kids are currently being misdiagnosed or go undiagnosed because they don't fit any of the current diagnoses.
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Name	Nick McCurdy, Patient/Advocate
Demographic	Autistic individual; Family member of an autistic individual; Researcher; Other
Response	More funding for disability services would result in shorter waitlists and easier application processes for necessary aid. It would also be helpful if more services were available with accessible websites for those with communication or other difficulties.
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Name	NICOLAS LINARES-ORAMA, FILIUS CENTER-UNIVERSITY OF PUERTO RICO-MEDICAL SCIENCES CAMPUS
Demographic	Researcher
Response	The training and follow-up of family members who are poor and poorly educated; the requirements of Early Head Start & Head Start systems towards very early diagnosis/assessment and inter-professional intervention; with continuous family follow-up and participation.
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Name	Nicole Corrado
Demographic	Autistic individual
Response	A universal basic income, free budgeting courses, free dental, medical, mental health preventive care, etc. And train medical staff at universities. I participated in an event at University of Montreal Medical School in which neurodivergent people played patients and were paid for it.
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Name	Nicole Collings
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	“Nothing for the person without the person.” We need autistic voices informing changes/improvements in supports and services. We also need to follow a neurodiversity-affirming model where we get away from the traditional medical model and instead depathologize differently wired brains and different ways of learning, communicating, experiencing the world, socializing, and behaving. We need to create environments where people feel safe to unmask and can be open and honest with their providers. We need providers who are educated about non-stereotypical presentations of autism as well as the high rates of co-occurring conditions which should be screened. We also need to consider other barriers in accessing services including phone calls, paperwork, waiting rooms, etc—can accommodations be offered to help improve access to services?
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Name	NICOLE LEBLANC
Demographic	Autistic individual
Response	WE NEED ALL DOCTORS, THERAPISTS TO TAKE MEDICAID MEDICAID WE NEED FUNCTIONAL MEDICINE TO BE COVERED BY INSURANCE MEDICAID SHOULD COVER MASSAGE ACUNPUNCTURE, ZERO BALANCING, REIKI, HYPNOSIS, ALL TOUCH THERAPIES WE NEED CLINICS FOCUSED ON AUTISM , NEURODIVERSITY FOR LONG COVID
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Name	Noemi Spinazzi, MD, FAAP, Down Syndrome Medical Interest Group (DSMIG), DS-ASD workgroup
Demographic	Researcher
Response	Families experience significant challenges in accessing services due to a paucity of providers, hesitancy by these providers to care for individuals with both DS and ASD, lack of linguistic proficiency for those families whose primary language is not English, and many other barriers to accessing care; this is more pronounced in those who are uninsured or underinsured, who identify as racial/ethnic/linguistic minorities, and/or who experience poverty and housing insecurity. Challenges in accessing services and therapeutic supports have gotten worse since the Covid-19 pandemic, as many therapeutic providers have stopped accepting insurance or have transitioned their service to telehealth, a service delivery modality that does not work well for a majority of individuals with DS+ASD. Additionally, schools have seen tremendous turnover in educators and paraeducators, especially in special education classrooms and programs, and children with DS+ASD who rely on consistency, continuity, and expertise are bearing the brunt of these challenges.  Notably, most individuals with DS do not live near a specialized Down syndrome clinic, and really struggle to obtain adequate evaluations, diagnosis, and treatment recommendations. There is currently little incentive for healthcare institutions to support Down syndrome clinics, and the lack of government funding to support these clinical programs leads to barriers to opening or expanding these important programs. To truly support individuals with DS and co-occurring ASD, governmental organizations need to provide additional funding to programs that care for this vulnerable population to enable them to expand access and enhance their care coordination abilities.
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Name	Olive
Demographic	Autistic individual
Response	A large part overall is education as so many allistic people don’t understand autism especially in a medical setting, it should be mandatory to learn about autism and how it can affect medical care. That and making services more accessible and less stigmatized, a huge barrier for many autistic individuals like myself is lack of access to resources in adulthood or being shamed for needing them. Autism doesn’t magically go away once we become adults and so many people lose access to resources they had if they had any to begin with once they reach adulthood
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Name	Olivia
Demographic	Family member of an autistic individual
Response	Wider understanding of PDA
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Name	Pamela Bows
Demographic	Autistic individual; Representative of advocacy organization
Response	Meeting of basic needs including housing and communication, education for professionals regarding autism traits compared to symptoms of co-occurring needs— how they may interact or increase severity of symptoms. Removing barriers to care like siloed state agencies (in Massachusetts you can’t functionally qualify for both DDS and DMH)
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Name	Pamela MacAllister
Demographic	Service provider, health provider, or educator; Other
Response	Services should be provided in community settings. So many programs are in isolation and only serve people with disabilities. This does a huge disservice to the learners and participants. They remain isolated and therefore do not progress or are in danger of abuse.
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Patient- provider interactions could be much improved if/when more providers update their understanding of autism, in general, and especially PDA.
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Name	Parent
Demographic	Family member of an autistic individual
Response	Access to adult psych and dental providers! Insurance coverage for psych and dental! Education to ALL types of medical professions about autism and intellectual and developmental disabilities
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Insurance is a nightmare and an ongoing battle. Dental care is a big challenge. As my daughter gets older, there are fewer doctors/services for her. One office outright said "we have reached out quota of government contracts." She has Medicare and Medicaid. NONE of our drs participate in Medicaid. ALL of our psychiatrists have NOT accepted any insurance. Clearly reimbursement of specialists is insufficient, and these patients really need specialists. They actually need more treatment than normal peers as their treatment takes longer, typically for lack of compliance by the patient. My daughter's podiatrist had to stop treatment for plantar's wart as it would no longer be covered by the insurance. Yet treatment was longer than usual as my daughter pulled off the medicated pads. This type of situation (individual needing more visits and more time to treat) is typical for this population. So, many are actually being undertreated. Need more insurance coverage for longer treatment periods. Also, coverage for non-typical treatment. My daughter has to be put under for some dental care. Insurance does not cover full anesthesia. And we were extremely lucky the dentist is patient and was creative in coming up with a treatment plan. Other dentists did not even want to see her. Training physicians on how to treat these individuals is not enough, you have to PAY them for the extra effort and cost they experience.
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Name	Parent
Demographic	Family member of an autistic individual
Response	Specialized job coaching
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Name	Parent of Young Adult with Autism
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Our son would not have improved without access to excellent therapies. Even with employer coverage, we could not afford the co-pays. A healthcare foundation granted funds that enabled us to continue the therapies. This is simply not available to every person in every state all the time. Equitable access is vital.That means doing serious oversight of a given state/county Child Find programs. And appointing independent advocates for children in the IEP process which is heavily weighted *against* finding a child needs an IEP. Further, school respond terribly and consistently to actually providing these services. Governmental entities must have the ability to reward and punish school districts who comply or not. These 2 steps along would greatly expand access to every child in every neighborhood in every state regardless of demographics.
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Name	Patricia Quinn, Mental Health Asso of O.C. and Dept of Mental Health of O.C.
Demographic	Service provider, health provider, or educator
Response	There needs to be better coordination between Office of People with DDs and OMH Better diagnostic categories and nomenclature that fits the range of need and ability of those with autism Guidance for NP-Ps and psychiatrists in medication considerations as well as use of things like hallucinogens for people with autism
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Name	Patricia Thomason, Parent
Demographic	Family member of an autistic individual
Response	Insurance companies should be accommodating and approve services for the treatment of adults with co-occurring conditions. The fight for these services for the diagnosed autistic adults is yet another brick wall to climb that families and providers have to fight for.
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Name	Patricia Wright, Proof Positive
Demographic	Representative of advocacy organization
Response	Social policies can indeed transform the lived experience of marginalized groups, including those living with autism, and that includes addressing wellbeing in the autism community. The PERMA Model (positive emotions, engagement, relationships, meaning, and accomplishment) is one of the most widely accepted and utilized models of wellbeing (Seligman, 2018); the model is a core component of positive psychology. Using the PERMA model, the government can take action to promote the wellbeing of the autism community. As one of the current IACC Committee Members, Hari Srinivasan, recently wrote, “All humans, disabled or not, yearn for human connections that enrich their lives beyond a mere fulfillment of basic needs.” Increasing the frequency and intensity of these five building blocks of wellbeing increases access to a high-quality life. Addressing access to care is a reasonable first step to promote wellbeing for the autism community. Families report the burden of accessing care for their autistic children as tremendous. Promoting the social service workforce's wellbeing through established practices that promote engagement and meaning could be one component of addressing low job satisfaction that leads to high turnover. Corporate America has been incorporating wellbeing practices into its talent management strategy and operations for years; it is time for social services to join in understanding wellbeing's importance in recruiting and retaining a high-quality workforce.
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Name	Patricia, Student
Demographic	Autistic individual; Family member of an autistic individual
Response	Most of the specialists and providers specifically for autism only know how to treat and interact with autistic children. During my diagnostic at 14 I was asked demeaning questions that would be more appropriate for a young child or toddler, and most of the questions were deferred to my mother as though I were not in the room. The tests themselves were also for children, involving picture book, building blocks, and toys cars. When receiving care for chronic pain it is also imperative to keep in mind that autistic individuals process pain differently, I personally don’t show many external signs that I am in pain, unless it is incredibly severe, so much so that I cannot sleep due to joint pain or headaches and I begin to cry. I have been accused of drug seeking and faking simply because I have a monotone voice and don’t show much expression.
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Name	Paul Ridikas
Demographic	Autistic individual
Response	Have more support and inclusion for people with autism when it comes to improvements in autism services and supports to help address co-occurring conditions for autistic people.
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Name	Payton
Demographic	Autistic individual
Response	If someone is offering autism services through private means, such as Autism Speaks, I would greatly prefer seeing such companies put to a specific standard that guarantees not only that no abuse is taking place but that the services are actively improving the life of the autistic person receiving them according to the patient and not the institution. In terms of public services, the main issue is simply a lack of staff and a lack of education about available services. I think a financial incentive to potential therapists, doctors, and teachers would help to better increase their education regarding autistic people as well as helping to increase staff for such endeavors.
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Name	Penny, Autistic adult
Demographic	Autistic individual; Family member of an autistic individual
Response	Steps toward universal accessibility will help everyone, including autists. Ensuring that important (dare I say all?) documents are available in multiple modalities to accommodate different cognitive strengths/processes. Focus on output rather than input in any workplace where physical presence is not a true requisite of the role and significant allowance for respite from stimuli where physical presence is a key responsibility (manufacturing, retail, in-person service desk, etc.).
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Name	Person with Autism
Demographic	Autistic individual
Response	1. States Medicaid programs should cover seeing autism expertised therapists and getting autism related services for adults. Most states don’t cover these for adults. 2. People who receive autism related disability services should be entitled to privacy. As a disabled person with autism I have a host of issues with privacy each year. My state (Oregon) requires my home to be visited each year just to get services but people on other safety net programs have no such requirement also there are other intrusive requirements that really make it feel like I give up privacy for very basic services.
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Name	Peter Brown
Demographic	Family member of an autistic individual
Response	Many autistic people are extremely capable in certain fields but are unable to gain employment because of poor social skills. Employment services are critical to a positive trajectory in adulthood. There is much to be done to overcome biases in hiring and interviewing practices that lock autistic people out of quality employment.
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Name	peter mazure, parent
Demographic	Family member of an autistic individual
Response	Better trained doctors and nurses; most are poorly prepared to treat patients with Autism and ID.
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Name	Pon kavitha Anbarasi, St. Mary's College
Demographic	Family member of an autistic individual; Other
Response	Giving proper treatment of counselling and clinical assessments.
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Name	Priya
Demographic	Service provider, health provider, or educator
Response	It's really difficult to find hospice services for patients with Autism More funding for special education services in schools Parents of children with Autism need more community support and accessibility for services More daycare centers for children with Autism/ ADHD etc so parents can get a break Temporary Respite Care services where parents can drop off their children if they need to go on vacation or take care of their own health More " In Home" workers who can help on a PRN basis
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Name	Purna Waldow
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Equitable and affordable care and accommodations need to be available to all autistic people, including those who are considered “level 1” or appear “high functioning”. These labels have left a massive gap in support for these people in particular. Affordable diagnostic services need to be available to adults who are high masking and have struggled their entire lives. More providers need training in what it means to be autistic/neurodiverse and that this population cannot be reduced to a stereotype, especially when considering other co-occurring conditions. States that restrict access to Medicaid or intentionally refuse to fund it also create a lack of available services to autistic people, as many are unemployed/underemployed and poor.
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Name	Quinn
Demographic	Autistic individual; Family member of an autistic individual
Response	The idea of a Personal Aid needs to be much more normalized; I wish so badly that the school and health systems had departments, manned with employees who have an understanding of or even certification for working with autistic adults. And another for autistic children. There are options for people like us; as a hyper verbal/higher functioning autist, I wish I could work with my fellow man, and let them know we have options and capabilities. Even if they do not align with the same things from allistic communities.. we need more people who understand. To take the human aspect of it and be a person to a person. We are simply just people, with a different way of thinking of things. I think we need more diplomatic interpreters essentially. :,)
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Name	Rachel
Demographic	Family member of an autistic individual
Response	absolutely insurance coverage guidance, perhaps a case manager, a "go-to" person to help the family navigate and develop a course of action - someone who is COVERED UNDER INSURANCE a designated medical professional who specializes in ASD - so far we have seen a neurologist, psychiatrist, psychologist, pediatrician,
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Name	Rachel
Demographic	Autistic individual; Family member of an autistic individual
Response	I wish more professionals understood what I can look like in different people. I wish there was more professionals who diagnosed there should be more Support systems. Whether that be autism coaches, someone who can check on you and see if you need additional support. Someone who can help clean your house or make meals for you occasionally. Therapist who can help you with social problems.
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Name	Rachel
Demographic	Autistic individual
Response	Researched therapy needs to be available to autistics after they reach adulthood. Many of the services that are credible and have been backed by large autism researchers are not as available to adults. This can include occupational therapy, physical therapy, play therapy, and talk therapy.
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Name	Rachel brown, University of Kansas school of medicine
Demographic	Service provider, health provider, or educator; Researcher
Response	Equitable access to high quality care delivered by those with the highest levels of training and expertise. Every individual on three or more psychotropic medications should be evaluated by an MD psychiatrist with expertise in this field. Psychologists with training in behavioral interventions for severe behaviors should be available to patients everywhere. Hospital care can be accessible with safety teams focused on those needing more support because of challenging behaviors.
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Name	Rachel Goodman
Demographic	Autistic individual
Response	Services & supports can’t happen without early diagnosis followed by interventions. And for those diagnosed as adults access to services & supports needs to be available - but I’ve found those things are mainly offered to kids & families.
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Name	Rachel Payne, PhD, Didlake, Inc.
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	Improving autism services and supports to help address co-occurring conditions for autistic people is paramount. Understanding the barriers individuals face in accessing appropriate services due to factors such as location, socioeconomic status, and cultural differences is critical. The impact of co-occurring conditions presents additional barriers that people with autism already face in many areas of their lives, including employment and participating in their communities. Our experience at Didlake underscores the necessity of individualized, evidence-based approaches that respond to individual needs. Autism services should be tailored to address the specific needs and challenges of individuals with co-occurring conditions. This may involve specialized training for service providers to support individuals with autism and co-occurring conditions. The staff and employees working directly with individuals need specialized skills and training to meet the needs of the population they serve. Individualized treatment, support, or employment plans should consider the unique strengths and support needs of each individual.
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Name	Rachel Spencer
Demographic	Family member of an autistic individual
Response	We have a lack of services in rural counties. No autism centers within an hour drive from us.
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Name	Rachel Swisher
Demographic	Family member of an autistic individual
Response	Oh my goodness, insurance coverage. The insurance coverage through my husband's employer is incredibly lacking in mental health coverage. We pay over $200 a month for our son to meet with his psychologist. The lack of benefits for this health issue is dreadful. Patient-provider interactions can also be lacking. I believe providers could benefit greatly from CSE on working with clients with autism spectrum disorder.
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Name	Raine
Demographic	Autistic individual
Response	Health insurance will sometimes not cover, or only partially cover an insignificant amount of these appointments to recieve diagnosis or treatment for getting these conditions examined. These need to be covered better by insurances, and not just for children but also for teenagers and adults. Service-providers are also often dismissive because the care-reciever is autistic. They frequently will misdiagnose them or they will not recieve any diagnosis, treatment, help, or insight for their problem at all. They need to know what these conditions present as in autistic individuals. Jobs will not allow enough time off or breaks to allow the autistic person with co-occuring health conditions to recuperate. This limits a vast amount of job opportunities to an already vulnerable group. There needs to be more tolerance for the accommodations needed for autistic people. Employers often will not hire an autistic person with co-occuring conditions because they would have to accommodate them. This causes autistic people to stretch ourselves beyond our natural capacity. This often causes burnout, which, there is not accommodation for an autistic person experiencing burnout despite how likely it is to occure and how debilitating burnout is.
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Name	Rainier, Endeavor to Hope Counseling, LLC
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Insurance needs to cover autism assessments, especially those done by LMHCs, nutritional care, occupational therapy, mental health therapy related to living with autism and the societal stress, adult autism services of all sorts, adult peer support, and much more.
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Name	Rajarshi Rit, The University of Burdwan
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Ban the ABA therapy. Throw away the ABA therapy. DITCH the ABA therapy. There is NO such thing as "inappropriate play". Don't poison our livelyhood with "intervention". We are not criminals. We are human.
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Name	Raliat Bello
Demographic	Family member of an autistic individual
Response	Access to support within the community
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Name	Rashelle
Demographic	Autistic individual
Response	Equitable access to medications that help with related issues. Police and Doctors should be trained on how to deal with people with autism (anxiety attacks, meltdowns, etc)
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Name	Reagan
Demographic	Autistic individual
Response	I feel truly as an outcast in every sense of the word. Medical care was absolutely abysmal. I can’t get insurance because I can’t work. I can’t learn how to hold down a job. Can’t afford therapy. Disability doesn’t pay enough. And won’t allow me the privilege of disability either.
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Name	Rebecca
Demographic	Autistic individual; Family member of an autistic individual
Response	Stop treating autistic adults as idiots. Believe what we say. And stop gaslighting women and young people. Just because we might speak well, have a friend or be married or even parents does not mean we are not autistic. If you bothered to read any of my previous comments you would realize the abuse from real world has a lot to do with us hiding our traits. As it has become more acceptable of course you are seeing more autistic people. We were always here you just either hid us away in horrible medical facilities or we had to learn to fake it.
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Name	Rebecca
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Free access to diagnostic screenings. Insurance coverage. Disability access. Better disability pay. Doctors need to be better educated on spotting autism in adults.
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Name	Rebecca Bowen, American Speech-Language-Hearing Association
Demographic	Other
Response	-Care coordination and health care access across the lifespan particularly during times of transition (new living situation, employment) -AAC/assistive technology supporting communication and adequate time for direct instruction for the individual and communication partners -Spectrum of need for autistic individuals is a barrier to equitable access. Providers implement prescriptive treatment protocols without adapting to the individual’s needs and preferences -Caregivers often become decision-makers without considering input of the individual with autism, specifically with choosing AAC vocabularies and devices that limit access to other options for communication. Some institutions provide only one type of communication support due to funding needs rather than individual needs -Treatment should be individualized, considering all the areas of need, including communication and AAC for those who are non-speaking or part-time users. -Treatment should address family and community knowledge and acceptance as part of service delivery and goal setting to decrease stigma. -Improving models of interprofessional collaboration that includes time for training, information sharing, collaboration without the patient present. Billing pressures can disincentivize high quality care that teaming produces. -Consider how social determinants of health impact autistic individuals over their lifespan. People with communication disorders have poorer health care outcomes than people without.
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Name	Rebecca Dosch Brown, Parent advocate
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	demystify the stigma and prejudice around serving people with ASD. Teach practitioners disability history, the social model vs. the charity/pity and medical models, how society is wrong to categorize normal so narrowly and expand acceptance of behavior that doesn't harm others are okay and not in need of constant harping to try to change people whose minds are just wired a little differently. What if we see could as adults interpret these differences as strengths to build on and develop rather than to extinguish? Most things can be seen as strengths. If someone is in crisis help/show you care for them and don't berate and punish them. I really think practitioners need to shift their attitudes before the systems can hope to change (vs. fix the person not in need of "fixing"). Attitudinal shifts of neurotypicals are needed about disability writ large.
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Name	Rebecca Faith Crews, Autistic adult
Demographic	Autistic individual
Response	Insurance, advocacy in medical care, advocacy in legal networks. Having better access to information on how to do these things
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Name	Rebecca Farrell
Demographic	Family member of an autistic individual
Response	Everything! We need more paraprofessionals in public schools, we need therapists in schools, we need FREE public schools dedicated to serving children of ALL AGES with ASD and ADHD.
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Name	Rebecca Jukes, Mom of Autistic Child
Demographic	Family member of an autistic individual
Response	Access to care in smaller areas some areas have year long waitlists for services, doctor/therapy participation in state insurance, required autism training for public service workers (any one in a doctors office, therapies, dentists, police, rescue, everyone in the school system including support staff), insurance requiring proof to approve medications, therapies, support people after the doctor says they need it or income restrictions where you make just a little bit too much to qualify for this service but they need it.
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Name	Regina Conti
Demographic	Family member of an autistic individual; Researcher
Response	Improved support to provide families with paid caregivers. Agencies that advertise, screen and train qualified applicants. While families deserve a choice in caregivers they should not be burdened with the work of searching for, screening and training applicants.
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Name	Rex Frasier
Demographic	Autistic individual
Response	Accessibility, Incurance, Services, Service Provider understanding/interactions, Affordable Healthcare, cheaper testing and therapy, life coaching that IS NOT ABA(ABA is abuse and forces harmful masking strategies instead of how to exist as yourself in a world that is not designed with you in mind just to make everyone around you more comfortable, most autistic people who have endured ABA "Therapy" grow up to becoming more depressive and suicidal than those who were taught to embrace themselves). The entire system needs a kick in the pants to do better, if I am being honest.
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Name	Rhonda Moore
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	More research on late diagnosis, sex, gender and autism in women more research on service systems issues more research on lessons learned from patient-provider interactions. we need to know what works and what does not
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Name	Rick Grossman
Demographic	Autistic individual
Response	I teractions between Autists and Allistic people is much rhe same as watching an immigrant communicate with a native speaker. Exceptt the Allistic person does not understand that there is a language and culturaal barrier. This ahould be studied by linguists, anthropologists, and socologists. These problems are not psychiatric issues.
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Name	Robert Briskie, U.S. Citizen
Demographic	Autistic individual
Response	Ensuring equal access to ASD services is paramount, encompassing free & accessible insurance coverage & healthcare, as well as easily accessible therapy. Naturopathic & homeopathic practitioners should be available to aid autistic (ASD) people. Implementing a support system akin to student aid, offering one-on-one guidance in tasks like resume drafting, job hunting, & advocating for employment, contributes to their well-being. Assistance with finding housing, teaching life skills, & aiding in paperwork for social security disability benefits ensures survival & independence. Free tax assistance & rent stipends facilitate secure living. Educational programs on meditative practices benefit ASD individuals. Legislative changes, including the removal of marriage & income restrictions, combat ableism & mental abuse, fostering autonomy. Eliminating paywalls is vital for autistic individuals to thrive & learn self-care, empowering them to lead fulfilling lives. Also, you could allow more than this measly 1500 character restriction for these answers. I have had to sacrifice grammar to get my point and theme across in this commentary.
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Name	Robert C Bransfield, MD, DLFAPA, Hackensack Meridian School of Medicine and Rutgers--Robert Wood Medical School
Demographic	Service provider, health provider, or educator; Researcher
Response	Research the cause of autism.
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Name	Roberta Kane
Demographic	Family member of an autistic individual
Response
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Name	Roberta Lincoln, Parent Advocacy Group and lived experience
Demographic	Family member of an autistic individual
Response	Yes to all your examples above! Add more direct services and supports in-home, and intensive in-home behavioral treatment; anti-racism supports and services; training for schools, school systems and educators about Collaborative Problem Solving. MOVE AWAY FROM PBIS WHICH CAUSES TRAUMA AND PTSD in the educational systems! Teach educators not to use restraints and seclusions.
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Name	Robin Baumeister
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Universal insurance is the biggest one. Not only does the current system leave gaps in coverage, but navigating the private system is monstrous to understand. Current systems are not at all close to friendly to autistic or other neurodiverse people. Guides and trainings on how to navigate systems for autistic people and caretakers are also needed. And on the provider end, there needs to be better knowledge of autism and its co-occurring conditions. Generally, more services need to be created in general to ameliorate the service cliff into adulthood. Adult transition services would be incredibly helpful, including online and in-person systems.
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Name	Robin Blitz
Demographic	Service provider, health provider, or educator
Response	State Medicaid Waiver programs provide coverage and access to individuals with ASD, often above and beyond what commercial insurance covers. However, some states, such as Texas, have very long wait-lists for these Waiver programs. Eliminating the waitlists in each state would provide improved equity and access for individuals across the US.
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Name	Robin MacDonald, Parent and Conservator
Demographic	Family member of an autistic individual
Response	More case workers and caregivers are needed.
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Name	Robin Rhoades
Demographic	Family member of an autistic individual
Response	Equitable access to early intervention and accessibility of services through out a profoundly autistic individual lifetime. Insurance coverage for all. Service system issues, patient provider interaction. safe and accessible quality group homes for adults with profound autism. Livable wages for lifetime of caregivers of individuals with profound autism.
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Name	Robin Weisman
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	All. It should be required that all in the medical community participate in a training. Not virtually. But habds on trainingbto understand what works.
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Name	Robyn Linscott , The Arc of the United States
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	A common theme raised by individuals with IDD and their families is that they are often considered by medical staff to be “too difficult,” “uncooperative,” burdensome, or a ‘waste’ of limited time and resources. Conscious and unconscious bias, lack of disability competency or training in care for people with IDD, and resource constraints impact healthcare access and quality. Individuals with IDD that experience compounded discrimination include those with multiply-marginalized identities, and those with communication and behavioral challenges. Examples shared with The Arc included challenges accessing a broad variety of services from diagnostic testing, to preventative screenings, primary care, vaccinations, speech language pathology services, physical therapy, pain management, gastroenterology services, surgeries, mental health services, reproductive health services, oral health services, eye exams, emergency room services, and end-of-life care.
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Name	Rose Baumann, Parent advocate
Demographic	Family member of an autistic individual
Response	We need more physicians, particularly in the adult space, who have knowledge of autism best practices and awareness of ongoing research on the co-occurring conditions. As it stands now, individuals with co-occurring conditions wind up with referrals to psychiatrists who treat with multiple psychiatric medications that ultimately land the individual down the slippery slope of polypharmacy. These meds add more co-occurring conditions due to their interactions and known side-effects, causing further suffering for the individual.
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Name	Rosemary
Demographic	Family member of an autistic individual
Response	Identification, step by step effective treatment plans. And a road map for parents and professionals.
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Name	Rosemary Brierley
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Education for all staff and additional support in settings
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Name	Rosemary M. Morgan
Demographic	Autistic individual
Response	I think that there needs to be more research into how to support adults on the spectrum. The unfortunate saying is that we don't just spontaneously grow out of autism. With the correct support, I feel I'd have been in a better situation now, than what I am at. I know other people that could use more help as adults, some of them can't just jump through all the hoops that finding and funding the help they need. We need to simplify some of the processes, and also help with healthcare costs would be nice. Even with insurance it is nearly too expensive to talk to healthcare professionals. Educating employers about autism and how to handle those of us on the spectrum might be nice.
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Name	Rowan Gibson
Demographic	Autistic individual
Response
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Name	Rowan Leshy
Demographic	Autistic individual
Response	Everything listed in the examples. Exactly. Yup.
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Name	Ruby Bard
Demographic	Autistic individual
Response	The listed suggestions all sound amazing, the main one i think is important is access to Supplemental Security Income, Snap, and Medicare due to being disabled. 38% of Autistic people are unemployed and more than half report job instability according to the research paper "Predictors of employment status among adults with Autism Spectrum Disorder". Its incredibly difficult to enforce anti discrimination legislature so the better option is to make it easier for Autistic individuals to assess support outside of jobs that will be unstable no matter how hard we work to make it Illegal to discriminate (Millions of Cases of Workplace discrimination due to disability go unreported, its almost impossible to prove). Widening Disability wealth caps for Social Security Suport for married and unmarried disabled people so we are able to invest in our futures and purchase much needed gear or additional healthcare (therapy both physical and mental) would not only help us participate in society. It would help us gain the stability to do more than just survive hanging on by a thread. We could much better become productive members of society and eventually gain the infrastructure to get off of government assistance.
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Name	Ruth Hevelone, PDA North America
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Awareness of PDA is KEY to set up the right supports for PDA people. Education in schools and therapies as to how to support PDA people is absolutely crucial in their success.
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Name	Ruth Horowitz, Author of Living With Autism Undiagnosed
Demographic	Autistic individual
Response	Neurofeedback treatment through insurance. Better awareness of autistic needs in mental health settings, and execution. Home help for autistics who live alone and are going through autistic burnout. My house was an absolute disaster for several years. As I am recovering it's getting better but I couldn't get any help as I went through it. I slept on the same sheets for almost a year. My floors weren't cleaned for several years. I had to eat frozen dinners because I lost my ability to cook even though I started learning to cook at age six. Wellness check ins for autistics who live alone. When we are in crisis we are unable to ask for help. Doctors need to be aware that we may be reactive to things at lower doses. And that we have a different pain scale.
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Name	RuthAnn Winschel
Demographic	Autistic individual
Response	For the suicide hotline 988 it should have a specific part to talk to a person educated about autism in an autism affirming and neurodiversity affirming way. Just like there are specific hotlines for veterans, LGBTQIA+ and some other groups there needs to be something for autistic people. It needs to be something that is not controlled by state disability services because in NYS OPWDD does have some crisis counselors educated on autism but only autistic people who qualify for OPWDD can use the service. For NYS OPWDD needs to change their rules about who can qualify for services. I was denied any support services because my adaptive functioning score was 4 points too high. It is really hard not getting the services I need with independent living. I was late diagnosed at age 21 and I think if I was diagnosed younger I may have been able to get help because one of my friends got services at age 2 and we are very similar. Also all mental health workers like therapists, nurses, care managers need to be educated about autism in a neurodiversity affirming way. Even doctors need to be educated about autism. I’m always nervous about possibly being in the ER and having a meltdown and being physically and/or chemically restrained because that would cause more trauma for me. Psychiatric hospital workers need to be educated about how the environment of being locked up in a psych unit is not sensory friendly and can be extremely stressful and traumatic.
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Name	Ryan Bradley
Demographic	Autistic individual
Response	All the examples Job Training and placement Social Gatherings Money
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Name	Ryan Erdozain
Demographic	Autistic individual
Response	School services could do more to include neurodivergent kids in activities with neurotypical kids. When I went to school, I felt isolated after having to stay after school for math class because I was much slower than other kids and I could never catch up. I would have to cheat by taking tests with a counselor where she would go through every step with me. I would also be invited to socialize with the neurodivergent kids instead of being able to communicate in the cliques people separated themselves into. I was an outsider who tried to join as many clubs as possible to fit in but could never really find my place due to the inadequacies of my social life. I also think that neurodivergent individuals should have an easier way of accessing funds from the government to navigate daily life.
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Name	S
Demographic	Autistic individual; Family member of an autistic individual
Response	Separation from behaviorist techniques
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Name	S.
Demographic	Autistic individual
Response	Insurance coverage for sure. There needs to be better accessibility of both services and information.
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Name	Sabrina Par
Demographic	Family member of an autistic individual
Response	Having a team of people who support the autistic individual as a whole - not segmented parts that each specialist addresses without looking at the whole individual. Access to services that are not dependent on IQ/cognitive functioning as the uneven development of skills can be as debilitating as an intellectual delay. Supports for independent living skills. Supports for employment/volunteer.
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Name	Sacha
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Neurodivergant affirming practices and the elimination of ABA and other abusiv methods to avoid traumatizing patients.
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Name	Sam Stern, either individual person or democrat-center
Demographic	Autistic individual
Response	- update certain programs like transportation services, voting services, etc to include diagnosis like "multiple sub clinical presentations that prevent driving / entering crowded spaces" etc. - help public locations provide accessible menus/maps for folks with navigational needs and/or sensory needs - I would love to see stickers or notes on the outside of public spaces that rate things like visual complexity, floor patterns, flashing lights, mirror that catch glints etc. like a warning label on hmart! - craft services that allow me to "borrow " a guide from someone where to help me shop in otherwise inacceeeible spaces . these service exist but are often very rigid and set to certain times, need weeks of planning etc. - expand hours that services are available so I do not have to plan to be available at certain (often early) times just to get a ride someplace
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Name	Samantha
Demographic	Autistic individual
Response	Perhaps if more people who identify as autistic were in positions to provide these services, they would be more compassionate and effective. Our bodies, like our minds, are not operating in a "typical" fashion. As such, the typical recommendations and assumptions proven by studies on "normal" people are not always relevant or fully informed.
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Name	Samantha
Demographic	Autistic individual; Family member of an autistic individual
Response	Okay to take more than 20 minutes per appointment. Clear charges for services.
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Name	Samantha
Demographic	Family member of an autistic individual
Response	access to transition and work services once they leave school as many students cannot work or go to school. Additional supports and training for staff to support inclusion in schools. Insurance coverage for things other than ABA. support for families who are caring for individuals like respite
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Name	Samuel Pehrson
Demographic	Autistic individual
Response	Better access to proper medications such as cannabis, amphetamines (the adderall shortage is hurting the autistic/ADHD community greatly), norepinephrine reuptake inhibitors, etc. These medications also need to be significantly cheaper. Autism must be understood to be the disability that it is, and the policies of government agencies must begin to reflect and address the needs of those with it.
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Name	Sandra
Demographic	Family member of an autistic individual
Response	All across the board from medical to dental to behavioral, this population gets gas lit and or discriminated against which makes things harder on families and caregivers.
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Name	Sandra Doyon
Demographic	Autistic individual; Family member of an autistic individual
Response	Making autistic adults eligible for Medicaid automatically so we can access services would be great
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Name	Sandy
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Sandy Wormald
Demographic	Autistic individual
Response	I wish I would have known earlier. Not so I could be medicated or pitied, but so that people would have encouraged and helped me in my giftings instead of always shaming me and getting mad at me when I couldn’t be “normal”. I think there needs to be more research without conformation. I think there needs to be help with understanding patience and compassion. If we were understood and cared for we could find out what we need. The current system just wants us eliminated and conformed. Many breakthroughs we need globally are just beyond the compassion and understanding of “normal” people for those of us who are gifted.
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Name	Sara
Demographic	Autistic individual; Service provider, health provider, or educator
Response	A variety of ways to seek help, some of them not involving direct interaction. More training in medical professionals about what Autism is and the many ways it can present. Also, much more neurodivergent-affirming language.
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Name	Sara
Demographic	Autistic individual
Response	I paid $700 to be assessed by a "medical professional", who said to me "You just have C-PTSD, which can mirror the markers for Autism." It would have been helpful for her to realize that I have C-PTSD because I am Autistic, and no one takes it seriously, even though I have spent the last 14 months researching Autism in adult women, masking, etc. Lived experience is the best assessment, and the testing models are STILL geared toward young boys. Take into account how women/girls are socialized, and realize that we are pros at masking. It's a way of self-defense. The whole testing model needs to change. Acknowledge the racism present in our medical industry.
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Name	Sara Brown, Prevent Blindness
Demographic	Representative of advocacy organization
Response	Recommendations for improvements of vision and eye health services and systems for children with ASD include:  Parent/Guardian education around the risk for disorders among children with ASD and the need for eye examinations.  Support and case management to help families find available eye care, make appointments, and prepare children for the examination.  Professional education for special educators, healthcare providers, and others around the need for a comprehensive eye examination for children with ASD, how to make effective referrals, and how to support children with ASD in wearing glasses.  Integrating vision and eye health into home visiting programs to help prepare families as they navigate the eye care referral path (this should also be part of professional education).  Performance metrics for MCHB grant programs to ensure that children with ASD receive eye examinations at the frequency determined by the eyecare professional.  Support for training of eyecare professionals on how to perform eye examinations on children with ASD.  System changes that support flexibility in completing the eye examination over multiple visits, flexibility in scheduling, increased time for appointments, and providing at least two pairs of glasses to accommodate frequent eyeglass breakage with this population. This includes requiring Medicaid and other insurance companies to allow the flexibility recommended here.
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Name	Sara CdeBaca
Demographic	Family member of an autistic individual
Response	Education- special education for kids with multiple disabilities is a joke. It’s babysitting. Teachers are not equipped or paid enough to understand how such individuals learn. So they just babysit them.
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Name	Sara Trovinger
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	We are lucky that I make enough money for my husband to be a stay at home dad, but I have no idea what we would do if that weren't the case. We live in a rural area where we don't have access to any sort of school option for children with autism other than a public school, but my son was getting bullied so bad that we had to pull him out. Support for families to allow one parent to be a stay at home care giver for his child is ESSENTIAL.
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Name	Sarah
Demographic	Service provider, health provider, or educator
Response
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Name	Sarah
Demographic	Autistic individual; Family member of an autistic individual
Response	We need more access to services in general. We need to catch it earlier so we have the information nessasary to support the early and higher education required to live an independent life. We need doctors to take our concerns seriously. Caregivers need more respite and education. We need more community outreach. The problem isnt autism. It's living in a system that isn't built for us. A system that turns into a meat grinder for anyone who doesn't fit a specific standard. I do just fine, until it's time to perform for others. I've never been fired for job performance. It's always because of office politics. I don't enjoy going to the doctor or the store. I can always tell when they've pegged me as "other" and it's a race against that invisible clock to get my needs met before thier attitude blocks me out. We need more community.
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Name	Sarah K.
Demographic	Service provider, health provider, or educator
Response	There can be complications providing services when insurance limits coverage based on whether ASD is a primary diagnosis versus a secondary diagnosis.
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Name	Sarah Kelly
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I would like to see a nationwide program as opposed the individual states running their own problems. This leads to a lack of equity. We recently moved from PA to NY. A couple of months before our move, the rules changed. All those who came before my son are grandfathered in. They are allowed to spend thousands of dollars a year of the government’s money on things like trampoline parks and zoo memberships. My son can’t even get Medicaid. He’s a level 3 autistic with adhd and developmental delay. The New York State government does not consider any comorbid conditions when applying for Medicaid.
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Name	Sarah Lau
Demographic	Family member of an autistic individual
Response	Acceptance of different presentations of autism
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Name	Sarah Marlowe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Health care providers having a neurodiversity affirming approach, equity, greater understanding of diversity within autism and the comobid physical conditions require multidisciplinary approaches
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Name	Sarah McCarthy
Demographic	Autistic individual
Response	Insurance coverage
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Name	Sarah Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	Better support for autistic adults/ late-life diagnoses, easy-to-find access to self-reporting tools or provider outreach for research purposes, insurance coverage, reformed social services, better academic opportunities, better understanding of medication sensitivities (and more careful prescription practices) for patients with co-occurring conditions, improved accessibility to therapy
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Name	Sarah Mouser
Demographic	Family member of an autistic individual
Response	Accessibility for therapies, more accurate diagnosis, insurance coverage
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Name	Sarah Muecke
Demographic	Autistic individual
Response	I went through a period where I was actively suicidal, reaching out to programs and no one even called me back. I have a diagnosis on record. They want us to die in america.
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Name	Sarah Peitzmeier, University of Michigan
Demographic	Family member of an autistic individual; Researcher
Response	There is increasing interest from many parties lately on the intersections between autism and transgender identity. I urge any work on the topic to include an trans- and neurodiversity-affirming expert on the topic as it has been seized upon by anti-trans groups of late as another fabricated reason for legislation putting up barriers to medically necessary care for trans individuals. John Strang and Finn Gratton are two names I hear a lot with expertise in this area as a trans health researcher.
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Name	Sarah Stewart
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Care coordinators and patient outreach
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Name	Savannah Higgins
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Insufficient access to services and support is a major barrier for many, but an added layer of concern here is that once services and support are secured, the support may not be culturally responsive. Cultural competence needs to be taken more seriously among service providers and their education/training programs. This can lead to a better understanding of behaviors and diagnostic criteria within a sociocultural context for autism and other co-occurring disorders.
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Name	Scott Jones
Demographic	Autistic individual
Response	first more research needs to be done. this research needs to influence the policy in the service of autistic people in the k-12 system. but then there needs to be even more resources given to autistic adults out side of the education system. there is virtually no programs out there helping autistic adults outside of social security, which has it own issues.
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Name	Sean Heupel
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Improvements could be made through workforce education. Many autistic individuals would benefit from their co-workers being educated that while there may be ticks, we hold equity as human beings. This would allow for corporate acceptance of the need to 'stim' to self-regulate and the need for 'sensory breaks'. Education toward the strengths of autism would also be beneficial, such as a keen eye for detail and the obscure (that which stands out), our ability to do what is colloquially known as 'deep diving' into our 'special interests'. Our attention to correlations and patterns is also a strength, which many of us use for survival (i.e. how we learn to 'mask')
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Name	Shannon
Demographic	Family member of an autistic individual
Response	Staff is non-existent. We have been without staff for any services for 3 years.
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Name	Shannon Crandall
Demographic	Autistic individual; Family member of an autistic individual
Response	I found it quite difficult to get a diagnosis for autism as my insurance wouldn’t cover it. Finding neurodivergent specialists has also been extremely hard.
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Name	Shari Washburn, COPAA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	better screening and assessments for girls with autism
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Name	Sharon Anderson
Demographic	Family member of an autistic individual
Response	Provide them with the services that they need. Schools do not provide true occupational therapy even when it is requested by a physician. The OT Teacher provides aides and classroom teachers with things to monitor rather than being hands-on. That is a travesty and disservice to the individuals. I know finances are am issue, but it seems the system is not serious about improving the lives of those impacted. As a caretaker who has bern able to teach a few things by religion, I feel an individualized plan that is executed to meet the daily deficiencies would result in marked improvements.
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Name	Sharon Saavedra , Parent
Demographic	Family member of an autistic individual; Other
Response	Increasing the number is Educated experienced professionals working with our population Better trained workforce Staffing for group homes Special education services in public schools ; Medical professionals trained specifically in autism Affordability of services
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Name	Shauna Ikahihifo
Demographic	Autistic individual; Family member of an autistic individual
Response	There need to be more resources for autistic adults that are accessible to those of us able to travel and for those hospitalized or housebound. There also needs to be more funding to support autistic adults in being able to live independently, regardless of whether they come from wealthy families. We need job training initiatives within social services that aren't limited to those of us fortunate enough to be discovered and diagnosed before the age of 18.
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Name	Shauna, Mother of ASD Adults
Demographic	Autistic individual; Family member of an autistic individual
Response	Equitable access by regions of high prevalence of autism. Montgomery county Illinois has a high prevalence of autism but we only have a day program and cila for 21+ patients. We have to leave the state to get inpatient mental health coverage. Every state should have at least 2 inpatient programs for adults with autism and mental health disorders. When my sons were diagnosed with autism the prevalence of autism diagnoses were 1 in 157 boys would be diagnosed with autism (2005). Now the prevalence of autism is 1 in 36. Our country and states and regions do not have the supports to this aging population. They are falling through the cracks. As the parents of this population age, these children have nothing but a broken system to support them when their parents are gone.
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Name	Shawn Sullivan, Autistic adult
Demographic	Autistic individual
Response	Stop allowing insurance companies to dictate the care of people. A for profit company should be the one deciding who gets treatment and who does not. Train people who do evaluations better. Can we create a better system of diagnosis that allows for co-occurring conditions to exist. Can we get sensory processing issues tied to autism diagnosis?
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Name	Shawna Strickland, American Epilepsy Society
Demographic	Representative of advocacy organization
Response	The time to diagnosis of autism comes with a waiting list ranging from 1- 3 yrs, depending on the patient’s financial situation and location. The diagnosis of autism spectrum disorder necessitates genetic testing, which not only benefits the patient but also allows parents to plan further pregnancy. Autism requires a significant allocation of public health funding, and genetic testing should be easily accessible, enabling us to address the issue at a certain level. Clinical resources and social support could both be improved. A network of resources for affected patients and clinicians would improve care. Patients often want referrals to specific services or practitioners with experience/knowledge. There are limited resources outside of academic centers in many cases and finite resources at academic centers, which exacerbates the problem for patients and clinicians. An additional void is that once patients graduate from high school and post-high school programs, there may be limited opportunities for them to remain engaged with the community. Some day-programs don’t allow patients with epilepsy, and the same is true for some work programs geared towards individuals with autism. Even if the program does admit a person with autism and epilepsy, the staff may be anxious as they are not appropriately trained in epilepsy care and, as a result, restrict the person’s activity within the program, depriving the person of activities that could be of benefit.
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Name	Sheila Bell
Demographic	Family member of an autistic individual
Response	Recognition of PDA as a profile of autism. Early identification of autism in girls. Tools need to acknowledge masking.
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Name	Sheila Judge Leonard
Demographic	Family member of an autistic individual
Response	Free services & coaching to help these people with skills needed to better navigate & participate in society
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Name	Shelby crane
Demographic	Autistic individual; Family member of an autistic individual
Response	Better special Ed resources in all schools that are tailored to the way people with ASD learn, having researches diagnosed with ASD lead studies and research would help uncover characteristics that NT people can't notice. Doing studies on girls with ASD so girls don't have to go undiagnosed till they are almost adults or middle aged . Research ways to help people with ASD who suffer from dyslexia and are discalcuate learn , start acknowledging that hyperlexia is one of the biggest telling signs that girls have ASD.
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Name	Shelby Shifflet
Demographic	Autistic individual
Response	Equitable access to grocery stores, retail, and places like the airport or schools, would be amazing for the wellbeing of autistics. An inclusive way of including us without making us feel alienated or uncomfortable. Such as a room where we can go for a break or quiet as to calm ourselves to avoid overstimulation. Better insurance coverages for doctors, specialists and dentists. The wait time for disability is damaging. I have been waiting for even a decision on disability for my autism and co-occurring conditions since they make my mind and body struggle to keep up with even a five hour shift. Being expected to force myself through agony to make an income is painful and torture.
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Name	Shellie Rubin, speech language pathologist
Demographic	Service provider, health provider, or educator
Response	I am sure insurance coverage and state options for increased or any services as well as services in the educational setting
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Name	Shelly Glennon
Demographic	Family member of an autistic individual
Response	Again, having a dx of autism level 1 tells many of the systems “low support needs” but having the PDA profile of autism means higher support needs. Also, in general the “allotted” amount of services is basically bare minimum to try to keep kids from ending up in an institution. We really need insurance to cover what is needed to set these kids up to thrive.
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Name	Shelly Moss, Atypical
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	An across the board overhaul of assessment and treatment for people on the spectrum. My daughter had to drive hundreds of miles to have my granddaughter diagnosed because they were not able to in our county. That's ridiculous! As an adult I have been denied assessment because I already have the "atypical" diagnoses from the 90's, that is also ridiculous. These should be accessible to everyone despite insurance coverage in my opinion. They should also be accessible everywhere medical treatment is offered. Training and education are imperative.
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Name	Shelly Witte
Demographic	Family member of an autistic individual
Response	Why can't we start a guardianship at a sooner age? Why can't I still access my son's medical records since he turned 13? He's autistic. Why couldn't we get life insurance for him? We were told too many autistic children grow up and end up in jail so he is uninsurable.
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Name	Sher DeGenova MS CCC-SLP, Flemington-Raritan School District, NJ
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Better medicaid rates, since no one wants to accept it for medical care. Better transportation to get around in our communities, esp to doctors.
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Name	Sheri Mills, Prader-Willi Association USA
Demographic	Family member of an autistic individual
Response	We need more providers, and access to providers. We live in a rural area and do not have a lot of support. But, even in larger areas, should we drive, the waiting lists are so long. We need help now. Not in 3-5 years. We also need frequent help. We need to educate schools, but we need the staff too. More funding to schools needs to be a priority for our states. Special education is suffering. And, yes insurance coverage.
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Name	Shiloh
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Equitable access and expansion of services that Autistic people approve.
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Name	Shonda
Demographic	Family member of an autistic individual
Response	I would have to say all that was given in the examples. Especially services needed of teens with severe autism. There are quite a few programs for "higher functioning" kids but what about the population that are left out the equation. MORE services, programs on weekend and after school events in PHILLY
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Name	Simcha Weinstein, NYADD & FTNYS
Demographic	Family member of an autistic individual; Other
Response	We reside in New York State, where there's seeming confusion over which actual system is responsible for providing mental health services to the autistic population, as case management is separated between comorbidities, requiring an impossible choice of attaining services of the Office of Mental Health or the Office for People with Developmental Disabilities when in actuality one needs both. Different offices mean systems, which means different case managers, leading to a massive resource duplication. It suggests that case managers' purviews are distressingly limited in scope, never enabling them to provide whole-person care. And it means that all the while, the medical systems buckle under the weight of all the progress notes — and all the actual lack of progress
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Name	Sleep Research Society
Demographic	Other
Response
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Name	Sloane Walters
Demographic	Autistic individual
Response
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Name	Sonia
Demographic	Family member of an autistic individual
Response	How expensive it is.
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Name	Sonja
Demographic	Autistic individual; Family member of an autistic individual
Response	Providers being trained in diagnosing chronic health conditions and auto-immune conditions. Providers validating symptoms, taking symptoms seriously, being aware of their own biases, not assuming people are not taking care of themselves and this explains symptoms. Providers being aware of the co-occuraence of physical health problems in autistic people, especially women with autism. Providing care and treatment in a more neuro-diverse friendly, sensory friendly way.
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Name	Special needs mom
Demographic	Family member of an autistic individual
Response	Definitely adequate insurance coverage, once the diagnosis is given, the individual diagnosed should automatically qualify for Medicaid to cover costs that private insurance does not. Often times even physicians are a bit nervous when interacting with a patient with special needs who may be anxious and their anxiety can cause the special needs individual to become agitated and/or aggressive
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Name	Stacey Senn
Demographic	Family member of an autistic individual
Response	Insurance coverage is our biggest issue as a family. Our insurance is through my husband’s employer, and they deny us access to services despite state laws that are in place.
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Name	Stanley Jaskiewicz, Parent of adult child with autism
Demographic	Family member of an autistic individual
Response	Greater availability of mental health/anxiety counselors, skilled in developing trust with adults with autism. We have struggled to find a provider who can work with our son on anxiety issues. (His medical provider had spoken with him about them, but she recommended that he transition to a psychiatrist or psychologist. However, both work through talk therapy, which has not been an effective intervention with our son (other than informally with particular teachers with whom he had developed a relationship of trust while in school).
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Name	Stephanie
Demographic	Autistic individual
Response	I think improvements in healthcare, Insurance, government benefits, transportation and access to services would be very beneficial to the autism community and for those who have co-occurring conditions.
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Name	Stephanie Dulawa, UCSD
Demographic	Family member of an autistic individual; Researcher
Response	more educational options more community activities
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Name	Stephanie Ranno
Demographic	Family member of an autistic individual
Response	All of those listed - schools, insurance companies, service providers, healthcare organizations are all very quick to “not cover” or “not my problem to solve.” It can be overwhelming and complicated for individuals and families to navigate to determine what’s best. It can also be very expensive. And waiting lists are too long and services often too limited.
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Name	Stephen Silva
Demographic	Autistic individual; Family member of an autistic individual
Response	More coverage on how to help people interact with others.
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Name	Steve
Demographic	Autistic individual
Response	Knowledge, by medical carers, that these conditions exist, and are associated with Autism. My doctors didn't know the gastro-intestinal complaints are very common among us, and hypermobility syndrome too. I have both.
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Name	Steven Lunseth
Demographic	Autistic individual
Response	Adult social support is one of the biggest issues with autistic adults at this time. Autistic people have a tendency to be rejected by society as a whole leading to mental health issues being exacerbated.
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Name	Stevie Aubuchon-Mendoza
Demographic	Autistic individual; Family member of an autistic individual
Response	More services for adults with autism.
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Name	Summer Bammes
Demographic	Autistic individual; Family member of an autistic individual
Response	Medical case management for autistic individuals and their families. Proactive screening for co-occurring conditions in autistic people.
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Name	Susan
Demographic	Autistic individual
Response	Better, more thorough explanations of benefits, increased benefits for job trading and mental health too.
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Name	Susan A. Fowler, PhD, University of Illinois, College of Education
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Insurance coverage for mental health related services, equitable access to Voc Rehab Services, community college, trade schools with embedded supports to ensure successful engagement and completion of post secondary training. Independent living and group homes in the community are desperately needed to house and provide socialization opportunities. Medical providers outside of the DD or autism field often treat an individual with autism as fully competent adults when in fact they may not understand or comprehend the medical plans, prescriptions or services recommended. Advocates or supports are needed to assist many individuals with autism to negotiate much of daily life.
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Name	Susan Sigerseth, Retired Autism Proffessional
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Support sisters for new environments - school, work, social settings.
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Name	Susannah Fields, Parent
Demographic	Family member of an autistic individual
Response	Health insurance is abysmal at coverage for mental health and psychiatric care. My daughter was on her dad’s corporate insurance but it didn’t cover almost any of her needs. It cost two thousand a month for her meds and tens of thousands for each hospitalization. Once accepted to DDD/AHCCCS we had to drop the corporate insurance which felt really uncomfortable/vulnerable but we were going to be bankrupt otherwise. Service providers for behavioral therapy and respite care (etc) are sorely lacking and wait lists are long. Part of that is covid, but part of it is minimum wage for those dealing directly with kids who have complex diagnoses.
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Name	Suzanne
Demographic	Family member of an autistic individual
Response	I am lucky to be able to be able to be home with my son. We are a one income household. If we did not make sacrifices so I could be home my son could not get many of the services I transport him to. In my opinion for my own personal situation. If caregivers in my state could get some form of income for being home, it would make for a better financial environment for our family. Daycares are needed that are equipped to care for autistic children. If these existed parents could continue to work, but subroutine choice sacrifice has to be made. Student loans, if a parent can not work due to caregiving for an autistic child some relief with regards to repayment would be life changing for many families.
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Name	Sym Rankin RN, APRN, CRNA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Stop using drugs to treat symptoms and use a functional medical approach to heal their immune system and their gut health. Make insurance companies pay for this treatment. Stop poisoning our food and environment. Stop the overuse of antibiotics and other drugs.
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Name	T. Gittleman
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	Free education for providers outside of a ABA lens of ASD, ongoing webinars about relevant advancements, such as what PDA is and how to work with it
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Name	Tanina Cadwell, Unaffiliated
Demographic	Autistic individual
Response	- Increase Financial & Service Support for Evaluations: children & adults can expect to wait several months for an eval, and many insurances do not fully cover it. A formal eval would cost me well over $3K, despite being a “cut and dry” case. - Expand Financial & Job Search Support for Disabled Individuals: we keep ourselves trapped in unsafe jobs because the job search process is nigh impossible for a neurodivergent (even a high functioning one) to navigate. We often do not vocalize our disability due to the very clear ableism that still exists in the workforce, and sharing our diagnosis is incredibly risky when it comes to job security. - Tools for High Functioning, Level I Autistics: Already discussed in question 4. - Regulations to Better Protect Autistics in the Workforce: The existing regulations enable companies to work around accommodations for diagnosed autistics. Autistic employees are also at high-risk of being fired / not hired after disclosing a diagnosis, because companies do not explicitly state the diagnosis as the cause. - Expand SSDI/SSI to consider cases where “severe and frequent episodes of autistic burnout” meets the criteria: Many of us CAN perform the tasks defined as limitations under the SSA Blue Book. However, we can only do them for a short amount of time before we find ourselves in extreme cases of physical and mental duress due to autistic burnout. This leads to a cyclical spiral until we are no longer able to work, or even live.
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Name	Tara
Demographic	Autistic individual
Response	Definitely easier access to support services and more knowledge shared with general public about autism and what accommodations we might need.
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Name	Taylor Sweeting, Autism/ Marfan Syndrome Self-Advocate
Demographic	Autistic individual; Other
Response	More accessibility to services that are geared to aide us in understanding those services and specific assistance from people to help us navigate those services as well. Also in addition, more training geared toward services provided to autistic consumers provided by autistic self-advocates (Nothing about us without us!).
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Name	Tempest
Demographic	Autistic individual
Response	More support and resources for Autistic adults. Many of us are left with no supports. 85% of Autistic adults with a college education are unemployed. I am Autistic and an adult with (currently) no college education and am unemployed as my Autism makes holding a job extremely difficult and leads to Autistic burnout and suicidality. How many other Autistic adults without a college education do you think are struggling to find community and resources to help them?
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Name	Tetyana Davis
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Trained liaison or patient representative that will help communicate with health providers and remind them to not blame everything on autism.
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Name	TG
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Thomas
Demographic	Autistic individual
Response	Make it easier for us to ask for help. When autism is described only in children, many adults won't be able to recognize that. Overall more training on dealing with anxious people would help many autistic people. We are constantly worried someone is mad at us or we will mess something up. Also worried about being told we are lying about our issues or accused of having ill intent.
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Name	Tiana
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Equitable services, mandatory lived experience training, shut down of harmful neuro conforming services, autistic representation within all industries to ensure only beneficial support provided that actually supports autistic people be authentically them instead of the current ones that traumatise them, gaslight them and exploit them.
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Name	Tiffany Marie Ryan (Brittingham)
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization; Other
Response	Start with urgent care to prevent harm for the future and go from there. Expand disability services to reflect market rates (instead of forced poverty). UBI preferred because how many folks are undiagnosed? Statistically, UBI is more effective. Universal intersectional healthcare Universal intersectional mental health and spiritual care Prenatal and family services Educational supports Educate everyone in public service and healthcare in neurodiversity and divergence
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Name	Tosha Brothers
Demographic	Autistic individual
Response
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Name	Tova
Demographic	Family member of an autistic individual
Response	school services for 2e neurodivergent kids are hard to get
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Name	Tracey MacDonald, Profound Autism Alliance
Demographic	Family member of an autistic individual
Response	Access to knowledgeable, local doctors/therapists - especially those that work with adults. We had more medical support when he was able to see a pediatrician but once he became an adult, their were no drs. that could address his autism. Reduced wait times for appointments. Education of emergency response personnel. Cross functional teams that work together with each other. With limited verbal ability, and lack of medical knowledge, it is hard to know what to ask for. We have been referred to doctors, waited months for appointments only to be met with blank stares as to why we are seeing this doctor. (Example: sent to endocrinologist who asked us why we were there - said we were referred and our son is obese. These said until he is diagnosed with diabetes (he is pre-diabetic) they could not help us. This out of network, $500 appointment which we waited for 3 months left us feeling hopeless and stupid.
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Name	Tracy Dixon-Salazar, Lennox-Gastaut Syndrome (LGS) Foundation
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	For our Lennox-Gastaut Syndrome (LGS) community where co-occurring autism/autistic features, epilepsy and IDD are in nearly all individuals it is difficult for carers to find services that can help. Respite carers are inadequately trained, group homes can not often handle the excessive seizure burden, and hospitals divide each of these issues into separate health conditions requiring multiple specialists. This leads to the carer having to "quarterback" all of the specialties and the individual is not treated holistically. This is especially true in adult care an in rural pediatric care. The end result is that many of our families self-isolate out of necessity, which causes even further social isolation for carers, siblings, and the person with autism.
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Name	Tracy Johnston
Demographic	Family member of an autistic individual
Response	New therapies and treatments that acutally help and actual access to said treatments.
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Name	Trayle
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Patient-provided interactions is the basis of many challenges - when a patient and doctor TRUST each other, it is a solid base to address other conditions and find effective care solutions. It could be improved by raising awareness with providers about autistic experiences (and the diversity therein), and providers need to be supported to take more time with patients (the are overworked).
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Name	Ty Shields
Demographic	Family member of an autistic individual
Response	Don't treat autism as a "behavioral" issue. It's an emotional regulation issue. They are having trouble with self-regulation. The answer isn't giving them sweets and stickers and punishments. It's sitting with them, talking with them, helping them find coping techniques that work for them and not against them. Some of the traditional things don't work, like breathing exercises. Sometimes thinking of things that are their special interest (sometimes called hyperfocus by "experts"). Don't take those away. Also, meltdowns and tantrums are two different things, not the same, as autism "experts" refuse to believe/understand. Listen to the autism community.
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Name	Val
Demographic	Autistic individual; Family member of an autistic individual
Response	As all cited above - when our grandchild was diagnosed we were offered education on autism broadly but the suggested interventions do not work for PDA That's not equitable
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Name	Val Luther
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Access to neuro-affirming care. In NJ I had to opt out of my son being put on a state registry of individuals who are Autistic and despite my written request, the doctor's office still had him registered. We must protect children's privacy. Also, updated services so ABA is not pushed on families.
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Name	Valerie Beckwith
Demographic	Autistic individual
Response	Basic universal income, make public spaces more accessible, better insurance coverage & designated public transport
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Name	Valerie W, Self and child
Demographic	Family member of an autistic individual
Response	The public school systems need better funding, less restrictive policies that allow for a little give in places like attendance or a better way to deal with absences, and the staff need better training to learn how to deal with children that they deem "difficult" . Insurance needs to cover high functioning just as well as others and need to pay for any tutors or outside that any child not just mine needs.
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Name	Vanessa Farrand
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Insurance coverage for less traditional methods of helping individuals. Easier access to testing for adults.
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Name	Vanessa Smith
Demographic	Family member of an autistic individual
Response	If there was a clear diagnosis for PDA and understanding of it by professionals then it would be easier to get both the services and insurance coverages needed to help children like mine.
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Name	Vee Crowe
Demographic	Autistic individual
Response	Equitable access to/accessibility of services, better insurance coverage, proper training for service workers regardless of "how often" they work with autistics, better public transportation services that allow us to get to and from appointments(works for disabled allistics as well), more understanding from providers, better awareness about how autism presents and that not all us are cis white men/little boys.
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Name	Vicki Markowskin, Mother
Demographic	Family member of an autistic individual
Response	Definitely patient provider interaction - I have had experience with providers that dismiss my child’s health issues , even ones that have been cruel .
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Name	Vicky Scollay , Parent
Demographic	Family member of an autistic individual
Response	More creative ways to access support ie CAMHS when young person unable to engage
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Name	Victoria Miller, TCCMO
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Access to interventions, particularly early interventions, better screening in school settings and more support in public school settings for individualized education
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Name	Vienna
Demographic	Family member of an autistic individual
Response	Equity and doctors that listen to caregivers, not being dismissed and denying information and beliefs
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Name	Viki Quirk
Demographic	Family member of an autistic individual
Response	Equitable access to and accessibility of services, updated best practices for ABA and other techniques being implemented so ABA is not the only therapeutic option, insurance coverage for various services, providers getting continuing education on the various presentations of autism, more support for parents and siblings
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Name	Viktoriia
Demographic	Autistic individual
Response	That would be great if there were silent hours(no music) in the supermarkets, shopping malls (preferably always). Quiet corners available everywhere. Also access for good noice cancelling tools and sunglasses. That would be great if autistic people have access to therapy.
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Name	Virginia Fox
Demographic	Autistic individual
Response	Autistic adults have for so long been underrepresented in services and support. It is often treated like a childhood disorder and the only adults included in supportive services are parents and caretakers. But once we (autistics) grow up and become adults (specifically those that have lower support needs I believe), all access to support services feel absent. We’re largely left to our own devices. And insurance does NOT like to cover any services or diagnostics autistic adults seek
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Name	Vista autism services
Demographic	Service provider, health provider, or educator
Response	Enough staff to be able to pay attention to each child's needs. Diverted attention leads to the most self injury and aggressive towards staff
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Name	Vittoria Cristoferi, Medico Neuropsichiatra infantile
Demographic	Service provider, health provider, or educator
Response	Manca spesso la proposta o possibilitá di poter imparare l'uso di modalitá alternative, non limitanti la qualitá del pensiero da esprimere, come può essere l'uso della scrittura per comunicare, con le dovute facilitazioni tecniche e umanamente personalizzate [Translation: What is often missing is the proposal or possibility of being able to learn the use of alternative methods, which do not limit the quality of the thought to be expressed, such as the use of writing to communicate, with the necessary technical and humanly personalized facilitations]
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Name	Walter Newsom, Newsom Psychological
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Providers need to listen to Autistic people better to understand our needs. So much of the available resources are spent trying to change us instead of supporting us, that it is a constant fight to get even the small changes we have been asking for. Autistic people need smaller classes in school with more self-directed focus, we need more supports through major changes and an understanding that out typical developmental stages are going to differ in regard to timing/age compared to more typical norms. We are not herd animals, but we are often treated that way.
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Name	Whitney Lee, Neurodiverse UT
Demographic	Autistic individual; Other
Response	1. Universal and single payer healthcare including dental, vision, and mental healthcare. ( Not requiring people to do paperwork to qualify like they do for medicaid and medicare) 2. Replace ABA with services from neurodivergent affirmative providers including speech therapy, physical therapy, occupational therapy, and support aids or care aids (who assist with people who need more 24hr type care. 3. multiple options for making and cancelling appointments (including telehealth and online scheduling ) 4.
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Name	Whitney Storey, University of Louisiana at Lafayette
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Providers, school systems, and medical systems need updated training on neurodivergence and the impacts of ND. This requires funding and access to folks who have lived experience AND the ability to communicate the information in a way that works for these different power systems. Access to services that are helpful for ND kids are extremely limited in the school systems overall, but especially for those systems in marginalized areas. Insurance coverage for mental health issues overall is incredibly limited - and even if the coverage exists, mental health providers are extremely limited/misguided in their understandings about neurodivergence broadly. The medical system is extremely unfriendly to neurodivergent patients.
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Name	Whitney Voltz
Demographic	Autistic individual; Service provider, health provider, or educator
Response	All of the above. Where I live (Louisiana) there is almost nothing. I have to pay out of pocket for a therapist who respects autism. None of the so-called providers within my network (that I’ve found) are qualified to work with autistics. I’ve experienced a spectrum of unhelpful “treatment”, ranging from outright dismissal and medical gaslighting to providers minimizing my autism and not understanding its importance in relation to co-occurring conditions and a history of trauma.
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Name	Wilhelmina murray
Demographic	Family member of an autistic individual
Response	Patient provider improvements. Protective gear when necessary, improved pay, acknowledgement that small female staff should not be hired to work with strong aggressive male staff This happens all the time since finding staff is so difficult.
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Name	William Bryan
Demographic	Autistic individual; Family member of an autistic individual
Response	Examples given are quite good. Other additions such as access to public exercise facilities would be incredibly helpful, as would access to physical therapy. Publicly funded doctors being permitted to prescribe certain controlled substances, (e.g ADHD medications,) would remove many a roadblock to effective treatment for millions of autistics. Patient-provider relations *MUST* be addressed. Treatment is not dictated. Treatment is a two-way street, and it must be collaborative. Not authoritative.
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Name	William Spell
Demographic	Autistic individual
Response
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Name	William Stillman
Demographic	Autistic individual; Researcher; Other
Response	Stability of staff, programming and living environment would nearly eradicate all manifestations of anxiety and insomnia not otherwise attributable to legitimate mental health diagnoses.
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Name	Wyatt Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	I'm not sure there is any service that goes out of it's way to help autistic people, and if there is, there is not enough awareness of it. Disability services has helped me as a result of my autism on occasion, but overall there seems to be a large wall between people and any kind of help.
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Name	Wylder, Autistic
Demographic	Autistic individual
Response	Providers need to stop treating adults like children, even if they have developmental delays. Providers should be more easily accessible to people without or with limited health insurance
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Name	Yasmine
Demographic	Autistic individual; Family member of an autistic individual
Response	Better insurance coverage and more work related support accommodations would help so many. More public acknowledgment of the various lifestyles autistic people can live and achieve. Highlighting autistic voices and people so we are seen as equal and valued.
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Name	Yesenia Aviles, Caregiver
Demographic	Family member of an autistic individual
Response	All of the above- mentioned examples are extremely indeed part of the issue. No doubt. No one should go into this field if you do not take insurance neither underserved communities should have to face challenges to have access to adequate care from providers.
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Name	Zachary Kopel
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	My health insurance policy had no one available to do testing. Not only did I have to pay $6k out of pocket for testing, I then maintained a relationship with that provider for treatment. Again, OOP. The mental health services in the US are abysmal- and I have insurance. Reimbursement for this provider is embarassing- I was reimbursed about $2400 of the $6k I spent for diagnosis. The reasons mental health professionals DON'T take health insurance are good ones- they are not the problem.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The side effects of the common use of psychiatric drugs to control behavior may lead to physically or psychiatrically adverse impacts which nonverbal persons may be unable to express to others except through maladaptive behavior, which not only may be overlooked in treatment or care, but may be interpreted by medical personnel or caregivers as symptoms of a psychiatric disorder to treat with more medications. In our view, this creates a vicious cycle (where the medication becomes the primary driver of the condition being treated by medication) that needs to be looked at from a medical and public policy perspective. There need to be tiered services for autistic persons across the spectrum based on need just like there are for the elderly. There are few appropriate communal living situations for the severely autistic. Group homes that are adequate for the less severe do not have appropriate staffing or safety supports, and those historic institutions for the severe which remain have insufficient staffing and transparency. There are no jobs or recreational programs for the severely autistic because they need too much support. We need trustworthy data on outcomes vs. expense across the autism spectrum, and to encourage appropriate public housing, technological innovation, and development of an effective, efficient and well-incentivized workforce that values and rewards those who work with the disabled.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Access to services requires a sufficient number of appropriately trained clinicians which we do not have. In addition, even people who are eligible for Medicaid funded LTSS struggle to get the supports they need because of the shortage of direct support professionals. Adults with ASD who have not been formally assessed often end up having a long list of incorrect mental health diagnoses before finding a clinician who has training in identifying and treating ASD in adults. Many of the federal ASD initiatives focus on providing insurance coverage and services for children with ASD. People with ASD do not turn into people without ASD just because they graduate from or drop out of high school. Both clinical and social services for adults with ASD are very insufficient. Learn the signs act early is a great outreach effort to identify young children with ASD. We need a similar outreach effort to help adults who may have ASD identify and name the condition that is negatively impacting their lives. Adults whose social skills are not at the level of neurotypical people often face discrimination at work because employers misinterpret their behaviors. Even though I work in a disability related center, I have faced illegal discrimination because of my ASD or related to the medications and their side effects that sometimes affect my job performance.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More training & education for therapists & doctors. I recently had a therapist recommend ABA for my child. Research into PDA has determined that ABA will not work for these kids. (I personally would question if it's really working for anyone. But that's a different debate.) I had to pay $5k out of pocket because it's hard to find a knowledgeable professional willing to acknowledge PDA. Many of the professionals who will "diagnose" PDA don't take insurance. This "diagnosis" is only available to people with cash. I am privileged to be able to afford this access. This diagnoses his helped us write a better IEP at school. It's helped his teachers understand that he's not a "bad" kid. Without this diagnosis, this kid could easily be on the school to prison pipeline. We've been lucky to avoid police interaction at this point, but I'm scared for what a simple traffic stop could lead to. Police are not educated about PDA. They'll see his defiance as a threat. We recently hired a SRO at our local school. My son is more likely to be negatively impacted by the presence of a SRO than he is to be helped by one.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Please see previous answers. In addition, stop infantilization, stop pity, stop ABA, stop giving up on treatment of autistics because "it won't make a difference" or someone else is more deserving, single payer healthcare, teach the public what autism and autistics are really like, care coordinator or service to make phone calls for us since medical providers are dead set on doing everything by phone, making or supporting software that lets a patient manage and control their medical record in order to coordinate and share across specialists. Last, but far from least, autism does not end at 18. In fact, arguably, most don't know they are autistic until after they are 18. The lack of support for autistic adults is stark and avoidable if anyone with power would bother to care about autistic adults.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	First, until the private insurance debacle is fixed ( doubtful), children and families that have serious emotional disturbances ( dislike this term) need Medicaid. Very few states use BCMH to pay for medical/health needs for families and children with autism and co- occuring morbidities. States are very discriminatory. There is SO much work to be done. We need a Federal white paper on ADHD and executive functioning. We need to reclassify psychotic disorders as neurological. We need to have a campaign on Anosognosia. We need to recognize how serious mental illness impact health parameters, including cardiovascular issues and suicide. These are MEDICAL issues. The brain is a physical organ in the human body. We need biomakers. We need to stop shaming mothers. We need to work more closely with families as support networks. We need to have caregivers and families at the table, because the most impacted individuals have a difficult time advocating so we are not hearing from the full spectrum of individuals and families. We need to provide evdience- ases family counseling and have Medicaid and insurenace pay for it. Also, the Intergovernmental Serious Mental Illness Coordinating Committee needs to have more membership from the autism , academic, and medical community. A lot more money needs ro be expanded on these efforts.
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Name	Anonymous
Demographic	Autistic individual
Response	Autistic individuals require a dedicated case worker as a central point of contact for accessing medical and mental health services. The current system is fragmented, and a single touch point is necessary. With an established case worker, we can receive information on common co-morbidities, guiding us towards appropriate healthcare professionals. Additionally, there is a pressing need for increased public awareness. The autistic community, including caregivers, has been advocating tirelessly for ourselves and our children. It is crucial for the public to gain a comprehensive understanding of Autism.
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Name	Anonymous
Demographic	Autistic individual
Response	Better doctor care and knowledge, more training from autistic people and providers who are trained BY autistic people based on our perspective. More advocacy in doctor offices/visits, help from providers that understand how stress manifests in the body, somatic practitioners, trauma informed practitioners available for autistic people to help regulate the nervous system. Affordable access to foods that are free from pesticides, chemicals and preservatives. Health practitioners that coach autistics on how to eat better, move better and execute daily tasks with more ease and support. Have insurance cover these costs as part of disability services.
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Name	Anonymous
Demographic	None Indicated
Response	• Psychiatrist, Psychologist, and Nurse Practitioner interactions with providers/clients • Virtual visits versus a need for more In-person visits • Parent guidance for services available for the child from diagnosis through the lifespan • Increase funding of research (prevalence, disorder interactions, approaches to diagnosis, intervention, and outcomes) • Increased funding for training (providers, payers, and family members)
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	There needs to be more training and better pay for those who work with autistic people, especially in the home. Although our insurance covers in-home ABA services, we are unable to find and retain well-trained therapists in our area. As our son has gotten older, this has gotten more difficult because of his size and behavioral challenges. The wonderful therapists who've worked with our son over the years often left for better paying jobs. So I think autism services would be improved by recognizing how difficult the job is, providing proper training and support, and paying those jobs well. Then hopefully it will become easier to hire and keep quality care workers.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Accessibility for assessment. I could possibly be neurodivergent and the process to get assessed is made for people who are neurotypical. How does that make sense? Especially for people who are being diagnosed later in life typically don’t have the support to follow through with the process of getting assessed. And that’s even if they have the money to do so. ASSESSMENT AND DIAGNOSIS SHOULD NOT BE A LUXURY.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Better access to diagnose and therapy
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Consider and Support natural healing and the arts
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	We live in NY and developmental disability services thru Medicaid waiver are still silo'd under OPWDD. However, they can lit access based on "need" that is also impacted by complicating medical issues. I have avoided OPWDD services in fairer of other waiver service under DOH because I feel the OPWDD system is slow in determining need which can delay supports for a year or more. My son has other needs and I wish I could access some OPWDD services but won't give up his current eligibility under DOH because of the negative stories I hear about OPWDD. Too many hoops for.too little service. I would.like those waiver services under OPWDD to be accessible without additional bureaucratic red tape.
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Name	Anonymous
Demographic	Autistic individual
Response	It would be great if i had access to places and services. Insurance also won't cover very much. It would also be super cool if doctors would actually communicate with each other because I had to get a care coordinator to force them to talk.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Insurance coverage improvements for autism and co-occurring conditions treatments would be very beneficial. This would include medicines and therapies. Discrimination in health care services could be improved. In my experience, health issues often are not addressed in people with autism by "regular" doctors because "it's not worth it." Service systems are complicated and not all potential services information seems to be shared by case managers. Training and awareness for health care and other professionals in how to communicate with autistic individuals is often lacking in my experience. Since so many have autism, more training and awareness is needed. Since autism is at epidemic levels and rates continue to increase, it is a major national health emergency and a major problem for society in general. Additional funding and efforts are needed in all areas.
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Name	Anonymous
Demographic	Autistic individual
Response	Educate medical personnel (and mental health personnel) providing services to understand that autism isn't a disease to be "cured", and can significantly affect the presentation of co-occurring conditions, requiring different modes of assistance. When autistic persons are receiving assistance, if they suggest that their autistic traits may have to be considered, it is very unhelpful if the medical and mental health personnel respond by comments like "you don't seem autistic" or otherwise treat the autism as irrelevant. For example, at an audiologist, the structure of the actual hearing tests seem designed for people who are "normal" rather than "autistic".
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Name	Anonymous
Demographic	Autistic individual
Response	The diagnosis process needs to be revised. Most of these tests are made by allistics for autistics and causes a lot of miscommunication that could result in misdiagnosis. The most common example I've seen is the question, "Do you struggle to put on shoes?" The autistic person would say no, because they have a system for putting them on so it's not overwhelming. Needing a system is part of struggling, but because it's worded in such a way, the diagnoser would've missed that information.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Allow OTs to bill for mental health and physical health interventions for child and family for all insurances. Stop promoting ABA therapy on highly susceptable population
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The barrier to social services is particularly high for individuals who lack the communication and mobility function to participate in safety net program requirements and as this population is so often lacking intellectual disability, yes has such high functional behavior impairment. yet deserve to live as free citizens but cannot process a simple trip to the food bank, or fast food restaurant for that matter, standing in line, making a dozen choices quicky or asking for help. Personal assistance, tailored to need and ability of each person on the autism spectrum, is critical tor keep individuals safe and meet basic needs.
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Name	Anonymous
Demographic	Researcher
Response	The prior suggestion for research into improving health literacy and health communication of autistic people and their care providers may improve the delivery of services and services satisfaction.
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Name	Anonymous
Demographic	Researcher
Response	patient-provider interactions. Providers need to listen to the patient more and respect patients' lived experience.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Improved training of professionals in and outside of graduate school, uplifting voices and perspectives of those with lived experiences versus valuing research and training by those without lived experience, equitable access to and accessibility of services, increasing services for autistic folx who are 21 years old+
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Non-traditional educational options for those with severe autism. Special education in public school can be absolutely traumatizing for a kid with multiple conditions and who is non-verbal. Please expand access to alternative access to education such as online, independent studies, etc. Public online charters do NOT allow for mod-severe kids in need of special education, even if they did well on distance learning. Options should be at least statewide and not only if you get lucky in the right district with the right administrator.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Improve education of concurrent health conditions in autistic people for pediatricians and general practitioners
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research, validation, and inclusion of the Pathological Demand Avoidance (PDA) presentation of autism in the next edition of the American DSM is essential to improving services and supports for this segment of the autism community. PDA-ers desperately need providers at every level of the medical, mental health, education, social work, insurance, and employment sectors to first be aware, and then be well trained to support the PDA-er in an accepting manner that takes seriously their innate need for autonomy. Many medical, therapeutic, and education professionals are required to follow proscribed steps and show progress toward specific goals in order to be paid (by employer or insurance). These steps and goals work counter to the approach PDAers need to experience to feel safe and make progress. Autism services need to adapt to this paradigm shift.
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Name	Anonymous
Demographic	Autistic individual
Response	Everything.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Insurance coverage for mental health care from a certified Dr who specializes in PDA (Pathological Demand Avoidance) Autistic specific Specialty Clinics to aid in medical visits. Disability Law to help with employment discrimination Funding for long-term financial support, housing, parental support, medical needs
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	communication between professionals better understanding by professionals
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Increased awareness of PDA type autism.
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Name	Anonymous
Demographic	Autistic individual
Response	We need to be made aware of what services there are for us in all stages of life and not just childhood. We have support all throughout elementary, middle, and high school, and then not much support after that. This can lead to skill regression in Autistic adults. We need more services, supports, and accommodations for adults of all levels of the Autism spectrum. We need services in rural areas. We need better insurance coverage. When we lose our parent’s health insurance at age 26 and only have government insurance, we can no longer see our specialists for many of our co-occurring conditions. This obviously keeps us sick and shortens our lifespan. We need our case managers, psychiatrists, therapists, doctors, teachers, and anyone else working with us to be educated on Autism with up-to-date information. Many Autistic people are LGBTQ+ and we need to know we’re only coming in contact with safe people who won't judge us based on our gender identity or sexual orientation.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Insurance coverage, access to resources to pay for a wide variety of treatments
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Specialist services for PDAers
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Name	Anonymous
Demographic	Autistic individual
Response	lower cost, better provider training *by autistic people*
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Name	Anonymous
Demographic	Autistic individual
Response	I think that changes that would help disabled people overall would help autistic people. Healthcare in general needs to be more accessible, more affordable, and more efficient. Public transportation needs to be much more comprehensive. Patient-provider interactions are rushed and impersonal for most people regardless of disability status.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Late diagnosis (26) creates a host of problems and extremely limited resources primarily to affordable access to treatment and supports.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Working from home and hybrid work environments must be seen as not only a matter of employee preference or convenience but as a matter of inclusion.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Increase virtual and asynchronous interaction opportunities to improve accessibility - allowing telehealth and electronic messaging whenever possible is a great example
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	It’s important to have a good fit patient-provider relationship. Resources to access support, internet, telephone, small groups.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	A willingness to learn from individual clients instead of textbook service provision.
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Name	Anonymous
Demographic	Autistic individual
Response	Eliminate the $2,000 SSI asset limit for those on disability and collecting social security. This would greatly reduce stress on the community reduce homelessness or save up for people to get cars to live in so you're not homeless on the streets.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Systems need to come from a neuroaffirming perspective. The medical model needs to change and look at autistic people as people, not a deficit that need behaviour skills to fit into a neurotypical world. More accommodations in schools and workplaces
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Better dental coverage, more dentists willing to accept special needs patients (waiting lists are often 2-3 years). Doctor training on diagnosing non-verbal patients. Simplify billing for patients dual eligible for Medicare and Medicaid so Medicare providers can be paid automatically by Medicaid for unreimbursed Medicare expenses; so more doctors would be willing to accept patients.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	In high masking women who are undiagnosed, if we present to the doctor’s office because we’re depressed, this is a pivotal moment where we should be assessed for autism. It might not be depression, it could be burnout and finding out we’re autistic could be helpful.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	At home mental health care
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Automatic Medicaid health insurance would be amazing… the multi year wait list for a waiver is not helpful
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More specialist education settings, focused on autism/ADHD PDA to be a diagnosis that can be received More services in general available, especially paediatric.. currently very long wait lists in all areas
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Equitable access, more accommodations as opposed to requiring masking of Autism/Autistic traits. Less "conditioning" to "train away the autism" and more empathy and neuro-affirming therapy.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	THE EDUCATION SYSTEM. It is appalling what’s happening in schools. Ask any parent what they want fixed … it’s the education system. Also, please devote more funding to neurodiversity-affirming supports like DIR Floortime. Enough with ABA.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Professionals who are knowledgeable in a more holistic way and can identify and support the different conditions as a unified human - understanding they all affect eachother and therefore change the presentation and how they should be addressed.
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Name	Anonymous
Demographic	Autistic individual
Response	-Low-cost/no-cost healthcare options for diagnosis and treatment. -Make it easier to get disability with autism alone. Make it easier for us to get around without a car, because many of us can’t drive. -More jobs willing to be remote or hybrid-remote whenever possible. It can make it easier for us to accommodate ourselves. -Address the homelessness crisis disproportionately affecting neurodivergent people, including those with autism. -Speaking of homelessness, remember how I said I often have to take days off work due to sensory burnout? Those days add up, as they are unpaid. Paid time off guaranteed to us, to recover from burnout, would be an absolute godsend to help keep a roof over our heads. -Educate on what autism actually is, break the stigma keeping many of us from seeking accommodations. Show what so-called “higher-functioning” autism looks like, and non-stereotypical symptoms. Educate on things like masking, overstimulation, etc. Most importantly, PLEASE let people who actually have autism speak. Let us tell our stories more, instead of just “autism moms” who sometimes infantilize us. -And remember: We’re not broken, we’re fish being forced to climb a tree. Near-sighted people without glasses. The world just isn’t built for us. And it gets more unforgiving by the year, as even neurotypicals struggle to afford basic food and shelter nowadays, and support networks erode. Many of the things that improve our lives, will also improve everyone else’s.
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Name	Anonymous
Demographic	Autistic individual
Response	equitable access to and accessibility of services, insurance coverage, larger service systems
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	There are two subpopulations in the autism population (individuals without intellectual disability (ID) and those with ID, including “profound autism”). Individuals with ID, minimal language abilities, and extremely disruptive/dangerous behaviors need lifelong comprehensive services which are not typically appropriate for the subpopulation without ID. The subpopulation with “profound autism” has the highest needs and is often ignored. We recommend: 1) Tying services to intellectual and behavioral needs, not the diagnosis of autism. 2) Educating health care providers on the different subpopulations within the autism spectrum disorder diagnostic category. 3) Increasing respite and residential services to meet the needs of autistic individuals with ID and significant behavioral support needs. 4) Developing specialized support for siblings of autistic individuals with ID. 5) Focusing on wellbeing as a global outcome measure which all services should increase or maintain. The focus on individual skills as a measure of outcomes, while important for some with less severe disabilities, is often ineffective for autistic individuals with more severe intellectual and developmental disabilities unless the “skill” improves wellbeing. Insights from our tool, The Catalight Family Wellbeing Scale, show that parent wellbeing is negatively correlated with parent stress and positively correlated with parental self-efficacy, demonstrating the impact and importance of wellbeing as a focus.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Equity is huge. Knowledge and competence within and between providers in the various fields, as well as accessibility, inclusion, and reducing stigma and bias. Accessibility and inclusion should become the default, vs neurodivergent and disabled people having to seek out, ask for, or fight for basic needs.
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Name	Anonymous
Demographic	Autistic individual
Response	In Israel there is a major lack of experts in Autism in general, in psychiatric field, occupational therapy for adults, speech language therapy. and in general other fields have lack of knowledge as well (gastro, urology, nephology, opthalmology) i dont know about neurology
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Name	Anonymous
Demographic	Autistic individual
Response	More autism services need to exist in general, especially for those of us late diagnosed. I am unable to work a full time job due to my sensory issues, chronic pain, and anxiety; however I do not qualify for disability because my developmental disorder wasn’t caught in childhood. So many social programs seem to believe that autism goes away in adulthood except for those with pervasive mental/intellectual disabilities, despite all of us having unique needs. Providers also need to understand that autism truly is a spectrum, and the ability to hold a short conversation or eye contact doesn’t mean the provider can assume the autism doesn’t exist. More doctors also need to be aware that our disorders often cannot be treated normally. Medications and treatments work differently in an autistic body.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	All of these services need improvement for individuals who are high functioning Autism. These individuals and their families need support and recognition. It is doing this group of individuals a disservice expecting them to function as neurotypical individuals with increased pressure to mask their true selves and ignore their needs, and for their caregivers to not be able to meet their needs due to the unrealistic expectations.
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Name	Anonymous
Demographic	Autistic individual
Response	Better education on how to treat autistic people when interacting with them, so we (autistic people) don't feel infantilized by those that are claiming to help us. We already struggling with social interactions, and feeling talked down to instantly builds mistrust and deters honest communication.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Access to a public education plan that can support a PDA child. Insurance coverage for support of mental health services. This is not a behavioral based disability. Anything ABA related or behavioral based does not support the autistic community and does not support an autistic person with a PDA profile
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Doctors/providers need to be more knowledgeable about different types of autism that do not like the stereotypical autism. It is a spectrum
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Patient-provider interactions are brutal for those of us who are twice exceptional and afflicted with the Pathological Demand Avoidance profile of autism. Giftedness combined with other forms of neurodivergence mean that some of us are "high functioning" enough to work and have some social connections, and yet our bodies and mental health are destroyed by living with our disability every day with no accomodations or safety net. When we attempt to get diagnosis, we are treated with disrespect and dismissal by providers because of the lack of research and understanding. We are often misdiagnosed, which leads to grave suffering.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Understanding of PDA by medical professionals, mental health professionals, and educators in order to create environments that facilitate well being and growth.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Accessibility of doctor's offices More help managing multiple conditions, which is just an exercise in complex communication Most of all- More education for doctors on what autism actually is
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Insurance coverage for occupational and physical therapy, speech therapy, for adults and children, without capping sessions to 20 per year or something like that. It's very difficult to afford therapies.
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Name	Anonymous
Demographic	Autistic individual
Response	Services and supports should be more aware of flat affect and atypical sensory responses when treating autistic people. Providers who are not well-trained in autism often cannot accurately triage or diagnose co-occurring conditions when they expect our responses to look allistic.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	1) More training of non-autism specific professionals (e.g., medical community, police/fire/emergency responders) in how to interact best to help autistic individuals feel more comfortable. 2) Insurance coverage - it is often difficult to find qualified providers who are covered and we often have to go to out-of-network private providers whose rates are only covered a fraction by insurance coverage. 3) Overall education, integration, and cultural change across all systems (schools, medical, public services). Rather than be siloed as different, greater integration can only help non-autistic people understand/accept autistic people more and help autistic people get services that will serve them better.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	educational supports for pathologically demand avoidant children, insurance coverage for services trainings for parents with children who are demand avoidant and fit in the pathological demand avoidance profile.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More and better care givers in a group home setting.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Parent support
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Better access to people who are trained and capable and knowing how to help kids, parents and schools. Yes insurance coverage
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	removing discriminatory exclusionary policies
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More intensive in-home support. We need help where challenging behaviors happen.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	All of the above!
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Affordability of services, accessibility of services, getting the most current research and knowledge into the right hands, providers need to stay current
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	We need more access to neurodivergent-affirming providers who aren't using neurotypical metrics to treat autistic people. More ND input into models of care. More providers well versed in PDA. We need more providers who don't buy into ABA. "Just try harder" and tough love isn't treatment. We need more autism-informed schools. We need more trauma informed care. We need much more access to providers who take insurance, and more robust coverage. We need insurance companies held accountable for coverage for intensive support rather than receiving denials. We need more accommodations for autistic patients (dimming lights, asking what the patient needs to feel safe, finding sensory sensitive ways of providing care, etc.). Easier ways for autistic adults to make appointments. Compassion/training among nurses & office staff when patients may become overwhelmed. We need more professionals (doctors, therapists, teachers, school admin/counselors) trained by thought leaders like; Dr. Ross Greene, Dr. Mona Delahooke, Greg Santucci OT, Robyn Gobbel (trauma therapist), and so on. We need more professionals looking upstream at the 'why' behind challenging behaviors or conditions and working to meet the needs of autistic clients rather than trying to reward or punish away challenging behavior. All behavior is communication, so we need to look at adapting and helping rather than just using dog training methodologies to extinguish what's seen as problematic.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Psychiatric care in person teledoc is NOT a solution for the special needs sector- the average person also cannot afford certain services - if you are fiscally above average - your child will get the help- if you are middle class or lower- the fees associated with quality (Sress quality) services are insurmountable
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research PDA, require clinicians and physicians to learn about PDA, and include it as a diagnosis in the DSM-5.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	More understanding on the part of providers. Autism friendly medical facilities (for example, omitting the piped in music and air fresheners and fluorescent lighting).
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Integrate the Social Model of Disability into medical care and services instead of the Medical Model. Autism is not a disease and does not need to be cured. Autism is a normal part of human diversity and a valid way to be human. Services, insurance, education, and medical care should focus on making sure autistic individuals have equitable access, and providing support when society does not meet autistic needs.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Group and team players. Learning to acceptance and giving and sharing equally with it others.
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Name	Anonymous
Demographic	Autistic individual
Response	More understanding and resources to help with service and providers
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Insurance coverage for occupational coaching and social opportunities Pathways to navigating services that decrease barriers caused by executive functioning differences Providers having up to date knowledge about autism Increased LGBTQ inclusion and awareness in services
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Consistent treatment for all. Even within our LA who have accepted a PDA report, diagnosis and strategies for one child are discounting my daughter's report, diagnosis and strategies from the same professional which followed a previous multi-disciplinary autism assessment by the LA. It is an injustice and the consequences of the LA behaviour have impacted so badly on my vulnerable daughter. The referral pathway and wait times is not helpful. Having separate autism and ADHD assessments when one clinician said their service could have done them together saving time, resources and money. Better training with certain EPs and professionals around autism. Instead of a LA EP telling me my child is not autistic and refusing to refer them for an assessment when the assessment team agree there is plenty of evidence and they share my frustration is not helpful. My son has since been diagnosed with autism, ADHD along with various other conditions and complex needs. Professionals who are not trained to assess have blocked pathways for my child. Also, masking is a big issue and parents and children should be believed as we live with the reality. Better training for schools etc.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Accessibility of services, understanding of PDA, presentations, supports. understanding of how AuDHDers (Autistic and ADHD) present and support around managing neurotypes that often have conflicting needs.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Support that is of firming, not recommending ABA, more services, better insurance coverage, services for young adults, services for multiple functioning levels, affordable private school options, respite options, better education to providers from AA people
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Name	Anonymous
Demographic	Autistic individual
Response	I'm still looking for professional support provided by autistic people. Counselling with an NT is useless to me because they cannot possibly understand what I'm experiencing.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Awareness/ support of PDA
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Services, much more training for teachers, GP’s, paramedics, dentists etc.
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Name	Anonymous
Demographic	Autistic individual
Response	We need more autistic providers who understand us more than allistics and aren’t ableist or insensitive. Health care and services should be more accessible and with better insurance coverage but that’s more of a systematic general American issue as well. But also more education for providers done by autistic advocates and more education on situational mutism or AAC as a valid form of communication.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Acceptance and training on pathological demand avoidance and it’s co-occurrence with ineurodivergent disorders
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Schools and teachers being informed of the latest research and evidence based approach to work with an autistic child
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Less judgement of how an autistic person “should look”. Don’t assume that the person you see, that looks “normal & capable” is tortured g the system or their parents are. Learn about masking and the fluctuating capacity of autistic people.
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
Response	Active training and recruitment of neurodivergent people to become future professionals within research, medical, psychological and support professions. It us vital that autistic peole are included in their own support industries. As above, stop pathologising autism. An inclusive society. Especially better support in schools, and in hospital/gp practice.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	on why ABA is harmful AND alternatives
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Extensive education and training for all of those who work with children and adults with a PDA presentation. The lack of awareness and understanding contributes to judgement, criticism, blaming, isolation, seclusion and expulsion.
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance coverage for supports. Readily available career coaching. Having a liaison to help navigate the insurance system.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Insurance through marketplace is not available with subsidies for the unemployed. Since she doesn't earn up to the threshold limit, she cannot get discount or reduced healthcare premium. She cannot hold down a job, and our state of South Carolina will not approve her for Medicaid because social security administration will not approve disability application. Insurance is too expensive and she cannot afford to pay for an individual policy.
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Name	Anonymous
Demographic	Autistic individual
Response	Medical providers need to be better educated about common co-occurances with autism. I have many things that my doctors seem to have not been able to connect the dots on but by being involved in the autism commiunity and speaking with other autistic people I am finding out they have the same issues. ie. EDS, C-PTSD, OCD. I also need to be believed when I bring up a concern with my providers. I am fequently brushed aside when I have brought up concerns realted to the aforementioned issues I experience. Autistic people are commonly, for lack of a better phrase, medical messes. We deserve better access and to be believed when we voice our concerns.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Disability services and tools are human rights services and tools. And yet insurance companies only cover things like abusive ABA or think that a wheelchair is a luxury item. No all tools are necessary and valid and covered under UNCRPD.... but the choice of service provider is also covered under UNCRPD - yet many countries still force people into certain therapies instead of allowing choice. There also needs to be more training for providers from actually autistic people. eg: an advocate needs to train the providers how to be neuroaffirming, do no harm and trauma informed. And the providers need to be audited by autistic advocates to make sure they continue this way.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Of course all of the above is not available to all, starting with early diagnoses and school experiences from nursery through college. In fact, most do not have access.
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Name	Anonymous
Demographic	Autistic individual
Response	More access to resources to late diagnosed adults with autism. My personal struggles: -Lack of assistance and understanding for learning how to drive -Lack of assistance and understanding getting, holding, and maintaining jobs -Lack of assistance and understanding from medical professionals about adults with autism
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Equitable access to and accessibility of services. A much lower bar for access to services. Many families of children with conditions that stack like this have vast expenses, costly equipment, constant appointments, inability for a 2 income household as one parent is full time caretaker. We need a lot more money going into these services so the bar for help is much lower. And insurance companies should be made to pay for MUCH more, if not everything! Families can't make it work and children are going without because of it
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Name	Anonymous
Demographic	Autistic individual
Response	Better access and affordability for adults to be assessed. Being asked to wait 18 months for an assessement that's going to cost several thousands of dollars, knowing the assessor may not be up to speed on (or believe) the ways autism presents in women/minorities/adults is a terrible experience and one many don't think it's worth having. Patient-provider interactions definitely need to be better, but the bigger issue isn't the individual interaction - it's the lack of understanding the interdisciplinary connection of these conditions co-occuring with autism. No one practices functional medicine - everything is compartimentalized - so even understanding if something *is* co-occuring is difficult. Most doctors chalk things up to anxiety or dismiss the stated reality of autistic individuals, especially women and people of color.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance coverage. More affordable access. Financial support for services and aids that allow autistic individuals to more easily access other services and basic needs.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	All
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Mental health services that have the training for disability (minority) related problems such as guardianship problems, unemployment, abuse in regard to lack of assistance with transportation or problems regarding other situations that involve self-care, and help with advocating for individual needs in regard to having a disability.
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Name	Anonymous
Demographic	Autistic individual
Response	1. Stop vaccinating. 2. Give the autistic person or parent the funds and resources. 3. Provide free school/ college for those with autism 4. Provide driving schools for those with Autism 5. Help develop communities for those with Autism. 6. Compel insurance companies to cover all costs related to autism.
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Name	Anonymous
Demographic	Autistic individual
Response	Listening to autistic people
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	If you really want to strengthen services and supports you need to put more teeth into the ADA, tighten it up so that so many workplaces and institutions can't get around it. Insurance coverage certainly wouldn't hurt. Are physicians currently trained on how to help patients with autism? If not, they should be.
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Name	Anonymous
Demographic	Autistic individual
Response	I think it's super important for autistic people to have better access to services as adults. I'm not talking about ABA or anything like that. I mean access to those who genuinely understand autism and can help coach us through life as an adult and give suggestions on how to thrive better. I think it's also important to push for better workplace and school accommodations for adults like allowing autistic people to use sensory aids or fidgets and being more accepting of them needing to take more days off of school or work than non-autistic employees/students. I think doctors need to be educated on how autism truly presents rather than the narrow and stereotyped view that a lot of them have so that autistic people can get the educated care that they need. I think insurance should cover more costs for autistic people such as sensory aids (noise cancelling headphones, for example) as a lot of autistic people are under- or un-employed and struggle to afford the things they need to improve their life.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Research and public education on sensorimotor system findings in people with autism.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Recognize that profound autism and high functioning autism are two different things with two different sets of needs and one set needs much more help and services.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Better educational support and awareness of the impact on co occurring conditions for all teachers and especially ALNCos would be beneficial. Essential really for a child with co occurring issues to succeed. Education of teachers is always the answer
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
Response	Broader insurance coverage, including unconventional treatments such as equine therapy. Additional provision and coverage of social skills small groups and one on one treatment. Much needed is expanded services and insurance coverage for counseling and education of parents, other relatives, and educators working with people with autism and ADHD. Family systems training including providers who can come into a home and train household members should be considered for coverage.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Most health and insurance services seem entirely based on phone skills, which is a huge obstacle for autistic people as well as people with anxiety or ADHD. More online systems and detailed information about what to expect would improve access tremendously.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	All of the above
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	The examples provided are all things I've personally struggled with and barely scratch the surface. But the single most important thing services and supports need to do is believe us at face value when we talk about our experiences. Just because I'm autistic doesn't mean I can't understand my own gender, and shouldn't be denied access to gender-affirming healthcare. Being autistic means that I experience and express pain differently, and that different presentation shouldn't result in me being denied pain management medication when I have a broken arm. Being autistic and non-speaking doesn't mean that support staff should speak to my caregiver instead of me as if I'm not present. Being autistic doesn't mean I'm incapable of expressing my own thoughts and feelings, so people don't need to ask about the experiences my caregiver has of supporting me as a proxy for understanding my experience.
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Name	Anonymous
Demographic	Autistic individual
Response	Autistic people should be given exceptions for the PT requirements to get an MRI. Six weeks of PT would only be likely to result in my being hospitalized again. Plenty of conditions make no sense to send to PT. Perhaps try it once but if the patient reports no improvement, to keep requiring it will only result in delayed treatment. It's a waste and expensive for the country. It means more ER visits. Doctors in general need to understand that many of our problems aren't brain based but physical. They need to be told to trust our words and in no way are we slow. In fact, they're brains are 30% less active than ours. As mention prior, it'd be good to get nurses, doctors and EMTs to ask different mental acuity questions.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	communication access
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Name	Anonymous
Demographic	Autistic individual
Response	More therapists and support systems learning about co-occuring conditions and how the symptoms affect autistic people's thoughts and behaviors would be helpful as well as more resources for autistic adults, especially those who are diagnosed as adults, as they much more frequently have co-occuring conditions. As an adult who was diagnosed as autistic in the last year I've had a lot of trouble finding the right support for it, especially when taking into account that I have several co-occuring conditions.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Incentives for doctors and especially psychiatrists to train in the needs of this population. Incentives for these providers to accept insurance.
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Name	Anonymous
Demographic	Autistic individual
Response	The whole diagnosis process as a whole kinda sucks. You get put on a really long wait list and you get no help in the meantime. I think the process for adults should be a lot easier. Insurance coverage could be better.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Access to services offered, especially local. Insurance coverage that covers more autism services, service system issues. Pay caregivers more than fast workers to stop them leaving because wages too low. Cover more therapies, ie social clubs, activities instead of squeezing what little money families have.
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Name	Anonymous
Demographic	Autistic individual
Response	Specific legislation that actually protects people on the spectrum on a state and federal level from workplace discrimination along with the removal of questionaires on job applications that are used to bar people that disclose that they have autism, abuse from parents and providers, as well as increased penalties for crimes against the community (physical and verbal bullying and murder). There should also be state services that provide therapy, actual life long skills, transportation if needed, job hunting ( and assignment for lower functioning individuals), and just a sense of belonging as a member of the communities they live in and a citizen of the United States of America.
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Name	Anonymous
Demographic	Autistic individual
Response	Services need to exist in the first place. You cannot improve nonexistent services. Where are the services for autistic adults in their thirties and forties and fifties and sixties and seventies? We are waiting.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Government should provide reimbursement for private pay practitioners that specialize in treating autims and co-occuring conditions. Most "mainstream" medical practices to no addresses nuances of autism, biochemical imbalances, etc. forcing parents to pay out of pocket.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Providers: listen (and observe) more and take more time before making prescriptions or decisions for treatment. Center the patient's goals (including children!) Stop expecting autistic people to confirm. Recognize and affirm their differences as valid and equally worthy. Obviously universal healthcare would help with accessibility. Or having more insurance options for partially employed (or irregularly employer) autistic adults.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	holy heck.. you stepped in it with this question. The affluential parts of town get the services and the providers, the not so affluential parts of town are ignored, multiple call outs, or flat out dropped clients. I live in Peoria AZ.. middle of the road, we once lived in Tolleson (lock your doors) before the gentrification (?) providers would cancel, DDD S.C.s would vanish or never show up. Same thing with outreach services, they do not happen in bad parts of town, at all. Speaking as a parent with 4 on the spectrum the early years we were lucky to get through on one income, we had no car, I couldn't work.. no one would watch my kids (now 27 & 24) the affluential parts of town or getting there was a laughable impossibility.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Access to ADHD medication already being an issue, it makes it worse when providers are not educated about the overlaps of autism and ADHD. Some autistic people are afraid to disclose an autism diagnosis to their prescriber for fear of being categorized as "misdiagnosed" ADHD and losing access to medication. Also, it's currently much easier to find a neurodivergent-affirming therapist than medical doctor (doctors not believing patients with EDs/hypermoblilty/POTS about either their physical symptoms or their autism if they are level 1 continues to be an issue due to Drs not being up to date and informed).
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Establish facilities with wide access that provide all indicated services "under one roof."
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son receives services in the state of MA from department of disabilities as a person with autism without an intellectual disability. Those services are quite limited and unequal to the services one receives with an intellectual disability. My son’s functional abilities are quite low with acts of daily living but that is not taken into consideration when looking at services and needs. My son has significant mental health problems yet the department of mental has denied services since he has autism! The departments will not work with each other to serve this comorbid population. As you know the suicide rate is much higher in autistic adults but the state of Massachusetts refuses to do anything !
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	There is a desperate need for more organizations that can provide adult life coaching, adult peer mentoring, one-on-one peer-to-peer body doubling and executive assistance. The adult world is difficult for anyone. Young autistic adults need a huge range of skill assistance.
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Name	Anonymous
Demographic	Autistic individual
Response	I'm not sure how we can improve autism services. Iproving autism services is a challenge, especially when individuals in influential positions, like college professors, lack awareness of autistic needs. I've experienced a professor who insists on constant eye contact and nods for comprehension, seemingly unaware that neurodivergence, including difficulties with non-verbal cues, is not yet normalized. This lack of awareness can lead to misunderstandings and discomfort for autistic individuals in educational settings thus, needs to be taken into consideration.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Equitable access to services. Services to Black autistic people are even more of a struggle than for white autistic people. Make it easier for us all to get help. It should not be through a for-profit insurance provider. We as a group, have too much poverty and work struggles to make that a stable way to access help. We need help learning to run cooperatives or other business structures that would give us the autonomy to work hours we are capable of working. There are so many of us living in poverty, we need supports. We need better supports in transferring to college, in navigating professional relationships with neurotypical people. We need housing we can afford, just like neurotypical people. Using "natural supports" is fraught with power differentials, which make us less safe physically. Often in this country, churches are communities with hidden sexual predators. And yet, we tell autistic people to go find supports in churches, without any instruction or cautions, despite the overwhelmingly higher numbers of autistic people sexually victimized. These are not the ways to administer public health initiatives. It affects people's lives daily. It has affected my life. Legally, we recognize the responsibility to help autistic people navigate our lives, and yet we are letting most of the population fall through the cracks!
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Name	Anonymous
Demographic	Autistic individual
Response	Patient provider interactions could be improved so that autistic individuals feel seen. We need better access to care- many people don’t have health insurance
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Name	Anonymous
Demographic	Autistic individual
Response	In my own experience, for those of us adults who struggle with sensory issues related to food, there needs to be access to nutritional therapy as an option.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Encouraging bilingual individuals to pursue careers related to supporting autistic people. There’s a huge need
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Equitable access to services Insurance Providers getting better training
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Encourage more staffing and staff to work in the field. Pay for education of staff working with autistic. Encourage person centered planning and training of staff of person centered planning. Encourage private insurance to cover autism services.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	First of all identify what they are, and educate current professionals. Universal healthcare because the majority of Autistic people can't work. Understanding that many Autistic people will need accommodations and they aren't wants, but needs. So many healthcare providers to this day refuse to accommodate Autistic people. Systems need to be integrated to support Autistic people because the systems are all siloed and no one talks with each other to support the person.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Other
Response	Workplace accommodation. Insurance coverage. Provider knowledge. Service system issues. Understanding of spectrum influence for all diagnosis and treatments is essential for proper care.
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Name	Anonymous
Demographic	Autistic individual
Response	Availability of free resources without requirement of costly professional diagnosis that often gatekeeps certain demographics (e.g., poor people, people of color, queer people) from receiving assistance. Acceptance of autistic people without seeking to fundamentally change them through therapy or other means (being neurodivergent and being neurotypical are both valid and okay ways of existing!)
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Name	Anonymous
Demographic	Autistic individual
Response	Every resource and interaction is care. Anything and everything you can do to accomodate and support autistic needs is supporting their needs.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage and medical professionals that are knowledgeable about how these conditions present in adult women.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Policy-wise, I think there needs to be advocacy to have better Medicaid and insurance coverage nationwide of services that support neurodiverse people (not more ABA, but things like executive function coaching, sensory supports, more sessions of OT/Speech therapy that is often really limited by private insurance, better coverage of AAC for all ages, more options for adults and not just children, etc.). It should also be easier to qualify for, and keep, Katie Beckett waivers, nationwide. Katie Beckett should really be an option in every state and run at least somewhat consistently between states for continuity of services when families have to move.
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Name	Anonymous
Demographic	Autistic individual
Response	Respect patients when they say no. No more restraint and seclusion and reparations for survivors. Make it more affordable for employees to choose their own health insurance carriers - I make too much money to get a marketplace subsidy but can't afford unsubsidized health insurance, and it is extremely difficult to find providers for some of my more specialized but medically necessary therapies that take my company's insurance.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	Many autistic people happen to also identify as trans. As a trans autistic person myself who has conducted qualitative research to better understand how queer, trans autistic folks create and define their identities, I want to be clear that I believe that autistic and trans are two identities that a person can have, but are not co-occurring medical conditions. With that being said, there are many societally biases against both trans and autistic people, and we can see that in the legislation being passed preventing trans youth from accessing gender affirming care. Some states, like Georgia, even want to prevent trans youth from access gender affirming care because of the fact that there are trans autistic people. I believe that there should be more services and policies in place to protect trans autistic youth and allow them to receive the gender affirming care that they deserve.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Better school supports. The school systems are completely overwhelmed and cannot possibly provide the accommodations children need. There’s not enough money, there’s not enough staff.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Insurance needs to cover services for occupational therapy, speech therapy, physical therapy, vision therapy. There are insufficient providers. Insurance needs to cover in and out of network. Fit of child and therapist matters. Many families sacrifice a lot to stay with someone who fits their child but may be out of network once networks change or all in network providers have a long waitlist. Early intervention is key, so waiting 6 months - 1 year matters. Rates need to be higher for insurance reimbursement. In 2023, An hour with a trained speech language pathologist was reimbursed at approx $20 out of network and the rest of the cost fell on us. There is no trained professional who is charging $20. It is absurd. Services are extremely expensive and only available to the wealthy. Finding and registering for and coordinating services is more than a part time job. Families need financial help and service coordination help. It feels impossible. Trying to work to have money to pay for the services and arrange for the services and then have enough sleep and energy to appropriately parent very challenging children. Parents need more support. More schools need to be better trained to manage kids with ASD and co-occuring conditions.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Give public schools funding to be used for student mental health, hiring autism specialists to address mental health of autistic/neurodivergent students as well as behavioral health in schools. Insurance barriers with providers who provide therapy for autistic individuals (several of the most qualified providers are not in network with insurances in the area we are in).
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The myriad systems and their requirements are overwhelming to navigate, even for high-achieving parents. How will an adult with autism/IDD navigate this when the parents are not around anymore?
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage for all autism related support would be awesome. Being taken seriously by healthcare providers would also be great.
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Name	Anonymous
Demographic	Autistic individual
Response	I think there should be more research on what treatments would help for autistic people with eating disorders. As I understand it, autistic people have higher rates of eating disorders, but I didn’t feel like my personal challenges were taken into account when I underwent treatment. I think there should be more consideration for people who struggle with group based treatments but need more intensive care than once a week therapy appointments. I think research into how healthcare workers and mental health workers can better communicate with autistic people would be beneficial. Professionals failing to speak with me directly in a concise way is something I find very frustrating about pursuing treatment, and is often a barrier for me.
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Name	Anonymous
Demographic	Autistic individual
Response	I, personally, have 0 services and supports, for autism or any co-occurring conditions. So for me, any services at all that could meet my support needs would be an improvement. I think the biggest issue for me is that I'm ASD Level 1, and therefore tend to be considered not disabled enough to get support. My support needs may be low but they aren't nonexistent. I personally, because of autism plus EDS, which are both "invisible" disabilities would greatly benefit from: Health insurance that actually covers autistic therapists and EDS specialists Doctors who are actually educated in EDS and how EDS affects their specialty Paratransit for getting to and from medical appointments No or low cost prescription and grocery delivery Doctors who are educated about the autistic brain, so I don't have to mask in order to get my pain taken seriously More places to sit down, especially with back and neck support, in public spaces Affordable treatments for the various issues that EDS causes, perhaps with no referral or prescription required (pending safety issues of course) Policy of immediate referral for EDS evaluation for a female autist who complains about chronic pain Policy of actually taking chronic pain, especially in women, seriously Free legal advice for requesting reasonable accommodations at work for chronic pain issues (and autism as well) Disability benefits that I can get even if I'm working
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	insurance coverage for things that ARE NOT ABA. More provider education on best practices for supporting Autistic individuals of all ages.
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Name	Anonymous
Demographic	Other
Response	Access to doctors who have an understanding of autism across the lifespan.
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Name	Anonymous
Demographic	Autistic individual
Response	Well basically the same thing I said in the previous question. You can use that when training not just healthcare folks but also businesses, law enforcement, air travel workers, you name it.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	insurance coverage and equitable access to services
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Insurance coverage, educational opportunities, alternative therapy access
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	See previous response. Also, the healthcare system in the US is, to put it mildly, difficult to navigate. Neurodiversity should be presented to every new patient along with an itemized list of resources, and they can disclose their neurotype if they want to.Self-advocates should be seen as the experts. Common behavioral variations such as speaking directly or louder than expected should not be assumed to be coming from a place of intentional hostility.
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Name	Anonymous
Demographic	Representative of advocacy organization
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Work collaboratively with family and school and see closely where they need help with Parent be educated
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Dual insurance coverage needs desperately to be addressed! Families cannot find any psychiatric/therapy providers and cannot just pay out of pocket
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Insurance coverage is an ongoing battle because diagnoses blend into one another and they either don't cover a beneficial support (i.e. vision therapy) that is needed for autistic people. Or they want to limit the amount of support received (i.e. not allowing an ABA provider to work with a Hab provider to bring a team model to the autistic person and their family).
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Coverage for treatment-including access without barrier.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	All of the examples you mention are highly needful and often overlooked today and in particular, insurance coverage for both child and ADULT assessment and support services. Elimination of the detrimental pathological model in the face of emerging neuroscience and neuroanatomy that demonstrates autism is a unique neurotype and phenotype, not an "abnormality". Education and a requisite minimum training for both medical and mental health professionals to attack and uproot the vestigial remnant of early American eugenicists and neuronormative supremacist bias so that autistic people are not regularly sub-humanized in their attempts to secure and enjoy the basic medical and mental health care they deserve and need.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Insurance coverage, especially for psychological testing Education for clinicians about co-occurring conditions and easy access to this education (i.e., affordable classes/training) Funding for therapy and other services for people who make too much to qualify for Medicaid, who are uninsured, or who are underinsured (due to poor quality health insurance plans).
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Name	Anonymous
Demographic	Autistic individual
Response	Everything. I have never been able to hold a job more than four years in my over 30 year career (now58), and am now utterly unable to work due to autistic burnout, cPTSD, major depression, and a raft of comorbid illnesses that include afib, fibro, diabetes type 2, and both joint and soft tissue algias, gastro issues, and intrusive, persistent tinnitus, snd still cannot obtain SSI supports. It’s like ya’ll just want me to die.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Accessibility of services
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Both private and public insurance should cover both outpatient and inpatient care for behaviors associated with Autism. A new insurance code should be created to correspond with these clinical impairments, and treatments must be recognized as medically necessary under mental health parity. We need to create a much larger network of care providers in all states to address the care needs. Some individuals with Autism require a therapeutic model of long-term residential living with onsite or collaborative psychiatric and medical care. Medicaid and other funding should directly and realistically address the needs of those dealing with significant autism.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	more ABA and peer play environments, trained professionals, more specialized schools or more resources at the schools, pay more to entice people to move out here
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Having trained providers who know how identify and treat autism and co-occurring conditions. Insurance coverage and access to treatment. In the DD system, they are not prepared to deal with co-occurring mental health conditions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Insurance coverage, services for older children/young adults
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Public and professional education on pathological demand avoidance. And services for severely behaviorally challenging individuals.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Insurance coverage is a huge obstacle. So much of my son's ABA therapy gets denied and we are caught in never ending loops of appeals and denials. Also, there is no understanding of the individuals who review requests for things that help to make our lives easier such as specialized strollers and beds to keep them safe. We have been denied through insurance more times that I can count. Also, many providers have no idea how to address someone who is not only autistic but also deaf. I am always explaining and advocating for him.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	The resources required to assess and treat severe challenging behavior using evidence-based procedures (i.e., Applied Behavior Analysis) are often expensive and the current reimbursement rates for ABA therapy are the same as those that cover early intervention for younger learners, which can be provided with far fewer resources. Therefore, providing severe behavior services in ABA clinics is currently cost-inefficient.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	people with ASD often fall through the cracks between IDD and MH services. but the facts are, people with IDD have a higher rate of MH conditions then the neurotypical population, but the MH services are NOT prepared to support them.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Assistance navigating healthcare and insurance systems, improved provider knowledge
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Parent support! (Financial and physical support), more tax breaks for all the money spent on healthcare for children and self. Better insurance coverage for services that actually help autistic people (not ABA therapies). Therapies tht support and not try to change the autistic person. Trainings for providers who are directly working with autistic individuals. More trainings on high functioning autism autistic presentation in girls and women.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Support early in school and home life. Community support for all families regardless of income
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	More awareness within communities such as school on neurodiversity. More education about how autism presents differently in females at birth in order to give assessments to those that might go unnoticed. Insurance coverage for autism evaluations as well as co-occurring conditions such ADHD and other learning disabilities, without any age restrictions. Insurance coverage for other therapies besides ABA. Additional covered therapies should include occupational therapy, speech therapy, DIR floor time therapy and any other therapies that will work out better for the individual based on what works best. Insurance coverage for low support needs autistic adults such for therapy and/or coaching. Autistic burnout for low support needs autistics is a problem that also needs addressing. Autistic children become autistic adults. They don’t disappear and neither do their needs. Health care providers should know more about autism than what has now become outdated and just include stereotypes. Autistic adults, even those considered low supports should have access to services to help individuals with jobs (accommodate for autistic needs), housing, mental health services, etc.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Joined up services, mentors to help navigate the system!
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Name	Anonymous
Demographic	Family member of an autistic individual; Other
Response	Policy and funding. A top down screening recommendation that rules out medical conditions AT ANY AGE right now: PANS/PANDAS, encephalitis, LYME, environmental toxins such as mold. The medical community is living in the dark ages. It's time to truly look for root causes in addition to genetics and TREAT what is wrong. Policy creating and "IEP like" document that allows action for family members to use if those in care of their loved one accomplish nothing or worse, abuse or neglect their loved one. Policy increasing funding and creating professionals with true expertise to provide care in day programming and residential settings for those with the most complex issues - and provides for higher wages for this role. Policy that requires physicians to see complex ASD patients AND provide accommodations to see them quickly, "THe Get In And Out" bill would work; happy to help write it.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	More coverage in the dental offices. I personally help and desensitize autistic patients who have a fear in the dental environments. My employers wish we could bill or get paid for these services, but it gets complicated and usually unsuccessful since it’s considered an elective procedure
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Honestly more money needs to be allocated to individuals and their families. The cost of caring for someone with autism is astronomical and many of us cannot provide the care that is needed across the lifetime.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	It’s not a matter of the services not being available. Supporting the very issue of what is making me feel left out in the world hurts. I think we have to change the way we view people that are different. I’m not so different that I need extra help. Often I’m so different that I can help make a difference in the world simply by being excepted.
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Name	Anonymous
Demographic	Researcher
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Equitable access most notably from insurance perspective
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Better understanding of possibility of multiple diagnoses and, therefore increased services.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I am lucky that my son goes to a good public school that is an autism school. We were able to move to a different state. There needs to be support in school or systems outside of it. Because we were completely alone and scared. We did not find out about my son's autism about he was 5. His doctor had no idea, it is not fair that my son was not diagnosed.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher
Response	All of the above need improvement. one major consideration in the US is the separation of behavioral (mental) health and DD services. because these are managed in different systems, it makes it very hard for autistic people to access the range of supports they need.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	1. Increased availability for autism evaluations. 2. Increased availability of developmental pediatrics and psychiatry appointments (9-12 mo wait for the last 19 years). 3. Increased availability of ABA services (12 mo+) 4. Increased counselors willing to see children under 13. 5. Regular CME on developmental disabilities, comorbidities, and treatments in the ASD community for Family doctors and pediatricians, to increase their comfort and confidence in screening, diagnosis and treatment. 6. Programs to help cover the non-covered costs for therapies, especially once kids are in school. 7. Cognitive /behavioral classes built into the school curriculum- DBT, CBT, social skills, emotion management , conflict management, etc.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Cover OT at a higher rate. Remove the limits on the number of visits. Cover SLP services at a higher rate. Remove the limits on the number of visits. Find respite care for families. Defund ABA at its current level. NO child should be subjected to 40 hours of ABA a week. Nor should they get 20 hours of ABA while they also attend school. It is too much. These kids are stressed. Let them PLAY. That is a child’s occupation.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I wish more funding would become available to help those with co-occurring conditions to help support them in the workplace. Autistics are still overwhelmingly unemployed and underemployed. Having a co-occurring condition like ADHD only makes it even more challenging to find and remain employed. I wish there was more funding available to provide job coaches and better educate employers. I also with there was more funding available to educate medical providers on how to interact with autistics, especially ones with co-occurring conditions. It's very challenging to find providers who understand these conditions and can properly interact with someone who has them.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Case management and navigation from 3 plus years, service system and insurance issues, provided training and social services training in IDD. More streamlined processes for all services. Crisis and mental health training for all personnel working with this population.
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Name	Anonymous
Demographic	Autistic individual
Response	Make the insurance provider search much easier to navigate. More support programs for adults that aren’t ABA
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	equity in employment funding for social support programs, free access to therapeutic services (sensory therapy, autism friendly counseling). Patient provider training and awareness
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Provider training on how to interact with patients who have autism
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	there is a generalized stigma surrounding autism even among care providers that they would rather deny services completely than to deal with a co-morbidity of autism. This is especially true of mental health services. It took us a year to find a therapist to address depression in my daughter because we had to find a therapist that specialized in autism and depression together, and not just a general therapist. The lack of insurance coverage for the very limited number of providers who specialized in this was a huge issue. This is an issue of equitable access to services for people with autism and increasing public knowledge about autism to improve patient-provider interactions. I think offering system-wide training about autism for providers who are not specialists in autism would help address this.
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Name	Anonymous
Demographic	Autistic individual
Response	Equitable access to and accessibility of services and insurance coverage are the main supports that need to be improved. Black, hispanic, and Asian communities have a significant disparity in accessing healthcare and services to receive early ASD diagnosis, support services for their ASD family member, and especially support for late-diagnosed autistic adults (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8500365/). Also, because there are disparities in access as well as lack of inclusivity and understanding of how intersectionality affects POC autistic individuals, many POC autistic people do not and/or cannot be diagnosed until they are adults, and getting diagnosed as an adult is more challenging because most testing does not consider autistic adults, and it is extremely expensive for those whose healthcare does not cover the assessments. Accommodations for both diagnosed ASD children and adults is lacking and needs more coverage for both high-support needs and low-support needs ASD individuals.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	The co-occurring conditions (anxiety, ADHD, language delay, cognitive delay etc.) are typically more impairing than autism itself for most of the children I serve. Everyone - not only those with ASD- deserves access to an accessibility of services and adequate insurance coverage. Putting all resources in an ASD bucket has made this diagnosis one that is highly sought out and sometimes excluded individuals with other behavioral health conditions who are equally deserving of services and supports and would benefit highly from these. Services and resources should be based on the child's developmental profile and needs, not just an ASD diagnosis or lack thereof.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Service system issues, adding more specialized crisis beds and units for those with I/DD and mental health needs.
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Name	Anonymous
Demographic	Other
Response	The CDC has an indoor air quality policy. Scented or fragranced products are prohibited at all times in all interior spaces owned, rented or leased by the CDC. It is time for all hospitals, health clinics, doctor and dental offices in the U.S. to adopt and enforce the CDC's indoor air quality policy, so that individuals with MCS and fragrance intolerance can access health care without becoming ill and debilitated.
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance coverage Patient provider interactions Information given to employer to adequately explain accommodations or even just to provide simple understanding not leaving all the weight on the autistic individual to explain themselves because communicating can be challenging Counselors in early age schools that specialize in identifying undiagnosed children
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance coverage for autism tests for adults. Many BIPOC fold are diagnosed later in life and tests are usually paid for out of pocket. Insurance coverage could help many BIPOC folks get the diagnosis they need in order to find skills and therapies to help them.
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Name	Anonymous
Demographic	Autistic individual
Response	There are no services for autistic adults. It's just expected that we have family to care for us the rest of our lives. This is not the case for most autistic adults. We are dying from homelessness or suicide at higher rates than others. We need services that provide education and incentives for businesses to hire and retain autistic employees. We need services for our basic needs like shelter, food, medicine security/procurement. We need affordable healthcare.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Universal basic income, ban ABA, universal healthcare, paid parental caregiver programs, automatically assigning autistic adults their own social worker if they're unable to choose on their own, free advocacy and gentle parenting education for parents.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Mandated ASD (and associated services) coverage within self-funded insurance policies. Our insurance changed this year and because it's a self-funded policy, it's not required to meet state or federal requirements for ASD services/coverage. This means that our son now has a cap on services each year and will not be able to get what is therapeutically recommended. Some policies cover only ABA, but not OT/PT/speech therapy despite them being necessary and caused by ASD. Our new insurance also has a $40 copay for each service within each visit. So now we pay $80-$120 twice a week for our son to get the services he needs. And then we'll hit the cap and need to pay even more out of pocket. This is on top of $600/month for our insurance. This is nuts and it's 100% based on corporate greed. We desperately need single payer health insurance for every American. Health care should not be a for-profit industry.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	We need more advocates who can facilitate difficult conversations and act as an interface between the patient and practitioners. We need insurance to be less difficult and less useless. Many insurance companies are no longer supporting ASD services and BH altogether. We need more equitable access to qualified ASD professionals and need to hold all medical professionals to some level of competency. Services for ASD folks should be available in rural areas, and remote options need to be made available in areas where service is unavailable or inaccessible due to staffing, coverage, etc. We need funding to get independent programs set up outside of general BH/psych services.
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Name	Anonymous
Demographic	Autistic individual
Response	Access to services needs to be easier, and information about services needs to be more consolidated. A lot of information regarding autism support services tends to be directed towards an imaginary audience of only non-autistic parents caring for autistic children. But autistic people grow up, become adults, and need to be able to navigate these systems ourselves when we don't have care givers. Additionally, many parents of autistic children are autistic themselves. Autism related services need to be covered for adults. Often, insurers will have childhood diagnostic service providers, but adult diagnostic service providers, if there are any, aren't covered. This means autistic adults have to pay out of pocket for diagnostic services which is expensive, often between $1,000 and $3,000. Insurance carriers need to have service providers for adults in network, so that visiting service providers for autism isn't more complicated than any other health care interaction, rather than forcing people to pay out of pocket and then try to navigate reimbursement, if the insurance company even offers that. Providers need to make it easier to communicate in preferred ways, and to use those methods of communication reliably. It doesn't help to fill out a form and then see the provider hasn't read it, or for online patient portals to take much longer to fulfill requests, necessitating spoken phone calls.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	All of the examples above. Also, the issue of schools/providers seeing people with autism as less human or needing to be fixed to fit in, instead of compassionately supporting them in their learning of how to be successful individuals for the ways their brains work.
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Name	Anonymous
Demographic	Autistic individual
Response	Better access to autism diagnosis for adults who were “missed” as children Better expertise/awareness by health professionals about autism & related needs — some of them watched RAIN MAN & think they’re good Insurance coverage for autism-related mental health services AND home modifications Workplaces designed with consideration for neurodivergent workers — tbh this would make things better for neurotypical workers as well and could lower the need for autistic workers to disclose
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Insurance must be comprehensive and housing must be made available.
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Name	Anonymous
Demographic	Autistic individual
Response	Having sensory kits and noise canceling headphones be more accessible for people with a diagnosis, extra support to working individuals with autism regardless of level (level 1, level 2, level 3) including payment benefits and insurance coverage especially for people with communication difficulties who either cannot talk or go nonverbal occasionally and better accessibility within loud environments for people who struggle with sensory input and overstimulation
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Insurance coverage and support services
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I think that the crisis centers needs to cater more to behavioral challenges. Most of the crisis centers that we have encountered is experienced in dealing with other mental conditions, but not autism and the goal is to just stabilizee the child and send them home. That is why many kids end up back in crisis months or even weeks later.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage for sure. Many later diagnosed autistics are self-diagnosed especially people of color and women as we don't have the funds to get a formal diagnosis. More doctors who have studied and understand that autism comes with many co-occurring conditions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Provide in-home/mobile medical treatment that is accessible to all and covered by insurance. Full medical coverage for OR time and anesthesia for sedation dental treatment. Training for new physicians in how to work with patients with autism
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	A lot more training is needed for their DSPs
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	All those listed in the question and, additionally, providing informal and formal support networking system ( including ethic societies in the local communities) between families who can share informations and strategies by efficient information sharing through creative platforms. Cultural liaison at each agency to build a bridge between families who lack self-advocacy skills or unaware of their right to receive social services.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Access to services not only for children but also for adults and seniors on the spectrum. More inclusion and less judgement Insurance coverage for adults and children Fair employment with fair wage (most people with disabilities lives in extreme poverty)
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	What I really wish for is a single organization that could provide resources, help with navigation, give emergency support in a crisis, and provide access to a group of autism experts for managing physical and mental health conditions. Having one organization to call and that other professionals could refer families to would be helpful, improve access for all individuals, and make the process so much easier. Services are too fragmented and siloed now.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More training for providers. An understanding that HPPAA protects the patient but it is ridiculous that we have to jump through hoops to talk to providers even after it's in the records that we have permission (i.e., HPPAA shouldn't be a one-size-fits-all approach when it comes to folks with disabilities). More training for employers in ADA responsibilities. And of course, equitable access to services, which is a huge problem in Maryland, with an extensively long list of people waiting YEARS for DDA services. Real world: simply telling my son to do something doesn't work, nor does printing out standard pages of info about a condition and handing them to him. Checking for understanding, and or writing different instructions in a manner accessible to him would go a long way toward better care. And of course understanding his family members are equal partners in caring for my son.
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Name	Anonymous
Demographic	Autistic individual
Response	Medicaid could become easier to apply for as a provider, because I’ve heard the process is lengthy, confusing, and frustrating. And the poorer of us could benefit from more options. Also, it would be nice if SSDI offered a living wage rather than poverty wages.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	(1) Improving access to diagnosis by increasing qualified professionals or incorporating genetic testing and diagnostic tests. (2) Removing stigmatized restrictions and policies on formally diagnosed autistics that prevent others from seeking a diagnosis. Some examples are autism registries and occupation restrictions. Services are inaccessible if you are not diagnosed.
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Name	Anonymous
Demographic	Autistic individual
Response	Increased focus on support for autistic adults instead of just children. These services can include things such as providing assistance for filling out complex paperwork and forms such as tax forms, applications, signing up for other government programs and services, medical paperwork, insurance papers, etc, disability benefits for autistics who do not have co-occuring physical disabilities, as sensory overwhelm can greatly reduce the amount an autistic adult is able to work, Communication accomodations for those seeking access to these services, as many autistics struggle to communicate over the phone. Improved education about autism amongst providers, as many are openly discriminatory towards autistics.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Make autism testing something that can be done at the pediatrician at least on some level. Testing cost me 3,000.00$ out of pocket because they didn’t take our insurance.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The two things I always hear and see people talking about are lack of services and accommodations in their area and being unable to access services due to income and insurance coverage.
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Name	Anonymous
Demographic	Autistic individual
Response	Banning ABA therapy. Autistic therapy that addresses the needs of autistics and NOT focused on the erasure of unwanted autistic traits by neurotypical standards. Better education for the general public about autism because the people tend to be misinformed. More accessible autism assessments for adults(cost and availability to get in without waiting a year). More significant workplace protections. More research into autistism that includes adults, women, trans, and BIPOC. Better diagnostic standards that can be done by GPs so access to a diagnosis is more accessible. Not allowing government or scholarly resources to recommend anti-autism things to be recommended to parents of autistic kids like ABA(dog training for Autistics) or Autism Speaks(hate group). Autism specific care that is covered by all insurance by law. Universal single payer insurance. This gives access to everyone, allows doctors to make decisions not health care, saves the taxpayers money, and will hopefully prevent people from going into medical debt for just trying to get the help they need to live functionally and have a better quality of life.
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Name	Anonymous
Demographic	Autistic individual
Response	Well, the biggest problem I have is not feeling I can be completely honest about my condition. Let me explain - I was diagnosed with Autism at 2 and 1/2. I was given therapy, put in Special Ed, was in Head-start, and was able to get out of Special Ed by middle school. I was good enough at masking and acting relatively "normal" that most people didn't realize I had Autism. My co-morbid issue of Epilepsy didn't start until my mid-20s, one month before my senior year of college. Due to this, I ask (and often get), accommodations as required for the Epilepsy specifically, since I don't ask for too much (just being able to take meds and not having to do certain potentially dangerous things). I feel I can't ask for accommadations for Autism, even if I needed it, due to the fact that most people don't understand and/or think in stereotype on what Autism is. If anything, as an adult, I've used certain traits involving my Autism to get promoted without saying that "I have Autism" at one job. Let's just say being able to figure out where around 3/4ths of a Super-Walmart's things are based on where are 5-6 items is a useful ability as a Digital Shopper.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Many providers do not take insurance due to rates paid back. Therefore parents have to pay out of pocket or not provide
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Name	Anonymous
Demographic	Autistic individual
Response	All examples already listed are valid. Equitable access would be ideal, and insurance coverage that covers most (if not all) medical treatments that the individual finds necessary would be even more ideal. Continuing to add barriers and hoops to jump through in order for people to get medical care WILL kill people. Full stop.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Provider education Access to appropriate trauma-informed treatment and services Significant investment in workforce expansion and education Anti-racism education for providers Behavioral supports in healthcare settings Sensory friendly and trauma informed environments Human rights
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Stop creating budgets that provide only for a few to be helped at the lowest possible monetary levels of assistance. Even the bottom of the barrel is higher than what's allocated to APPROPRIATELY help the disabled community.
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Name	Anonymous
Demographic	Autistic individual
Response	-Medical bureaucracy is incredibly complicated and difficult to navigate, especially when you have significant communication impairments. This either needs to be simplified, or autistic people need advocates to help them navigate. Additionally, it would help to have more options for how to communicate with service providers. For instance, I struggle profoundly with verbal interactions, but not so much with written. However, it's rare for any bureaucratic institution to allow fully written communications. -Doctors need better training on how to communicate with autistic people and others who may not communicate in a typical allistic way. They need to slow down with us, carefully explain, respond to questions, and not think that questions are a sign of conflict or non-compliance. Alternatively, access to some sort of advocate or intermediary in medical settings might help.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Insurance coverage for an individual to see multiple mental health providers in order to meet all their needs. Insurance coverage for communication supports and devices. Teachers and administration in public schools need to be educated by health organizations on how to better meet the needs of the students with autism.
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance coverage, equitable employment opportunities, better physical and mental health services, etc.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Need to actually provide services, period! Autistic adults do not have access to any services or supports. No insurance, no income, no support systems! And when you apply for social security disability, that's a joke! They make it a game of dragging it out as long as possible and denying you as many times as possible, hopimg you give up or go away!
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Name	Anonymous
Demographic	Autistic individual
Response	Access to mental health care such as therapists and psychiatrists that are knowledgeable about autism and its comorbidities that are covered by health insurance. Having more widespread information about where to get help, and having more options and information about having patient advocates during appointments. Having easier access to case management options covered by insurance.
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Name	Anonymous
Demographic	Autistic individual
Response	I think insurance coverage would be really good so that we can get the help we need. Also, educating providers on autism and what it actually means to be autistic. They shouldn’t treat us any differently than someone who’s allistic. They should take our issues seriously
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Name	Anonymous
Demographic	Autistic individual
Response	Providing autistic adults with a social worker or advocate who can assist them with communicating with doctors, filing taxes, applying for social security, and other extremely complex tasks would likely be beneficial to many who do not have a care-taker who can fulfill that role.
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Name	Anonymous
Demographic	Autistic individual
Response	Eradicating ABA therapy and instead focusing on guidance for accommodations rather than assimilation to allistic standards. Education in medical professionals for identifying autism in adults. Mandating public services like education to use up to date resources like the DSM-5-TR instead of the DSM-4, which was published in the 90s. Equitable and nondiscriminatory practice for immigration policies, job procurement, housing, etc.
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Name	Anonymous
Demographic	Autistic individual
Response	To have the health care system to provide affordable and accommodating resources for people in the community since everyone has different needs.
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Name	Anonymous
Demographic	Autistic individual
Response	Easier access to accommodations
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Training requirements for all providers to work with disabled patients (eg. the need for extra time, sedation, etc.). Disabled people have all the medical needs as other people, but too few professionals are really capable of treating them.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Have direct support professionals understand mental health illness
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	more supports available in rural areas
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Every autistic person no matter what level they are at, should be able to receive all services to keep them healthy and have programs available for whatever their needs are. Plus, they should be treated as people and not lab rats, but to research more on how they can progress in society. They should have more programs to help support their health and social aspect.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Development of healthcare professionals knowledgeable and able to care for people on the spectrum over their lifespan; insurance coverage for school based services so ABA, ST, OT treatment are provided in adequate intensity, duration and dosage given the level of disability
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Co-occurring conditions increase complexity of care. Parents and caregivers need much more support to insure that the person gets the care they need. Multiple systems of care: Medical/physical, psychiatric/psychology, dental, vision, hearing, IDD supports, communication and behavioral make it almost impossible for anyone to coordinate care for an individual. Many of these systems require excessive paperwork for eligibility and to maintain the service. Costs are exorbitant and unaffordable for most individuals and families. Highly trained and experienced care coordinators will be necessary until we can simplify these systems.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Find them the help they need housing, schooling, food, clothing, mentor etc. not just referral rabbit hole most caregivers get with no end in site.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Not all people with autism understand that they have autism or know what’s wrong with them. Providing resources that help people identify that they have autism. Assisting the people who are unable to advocate for themselves to get disability could help people who are unable to do so without assistance.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Havin comorbid conditions covered by insurance. Additional information for parents and caregivers
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance coverage needs communication with patients and providers accessibility to services is difficult insurance also might not cover medicines we need and should be negotiated higher education is inaccessible to many including jobs that require such education and work cultures in most jobs are inhospitable to autism
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Name	Anonymous
Demographic	Autistic individual
Response	Accessing services, general public awareness and education, education for doctors and therapists, low cost support groups and therapy, low cost and easy access to getting diagnoses, educating autistic people on general and local resources they could seek, medical insurance since autistic people need more medical services and might not be able to work to afford them all (or to get all needed services while working), education around work search and accommodations, removing all florescent lights, lowering volume in places, being mindful and curious about autistic people
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	ESRD dialysis- esp group in center setting. it can be so loud disorienting and chaotic in general, can be awful for those that have mental health, cognitive and neurodivergent issues... having a companion trained to help and redirect could help, so could private settings not all can do self dialysis at home caregivers could help with that- funding , specialized training and supports
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Educate all providers on the risks associated with ABA as well as alternative tx options. Educate ABA providers on the psychological impact of ABA as well as the internal experiences of autistic youth. Stripping autistics down to their behaviors is dehumanizing and ineffective. Educate providers on the various ways ASD can look and how to support clients with ASD. Way too many providers are relying solely on stereotypes of autistic people rather than genuinely understanding the condition (i.e. "You can't be autistic because you make eye contact"). Universal healthcare which mandates that ASD testing and support are covered. More effectively educate parents on how to accomodate their child's needs rather than focusing on changing the child's external behaviors (internal dysregulation doesn't go away because a child is trained not to show they're upset).
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Name	Anonymous
Demographic	Autistic individual
Response	Disability coverage for autistic people needs to be broadened. I am not on disability because I am apparently ineligible but I’ve never been able to hold a job for longer than 2 months because of my autism.
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance coverage/universal healthcare
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	So I had a really bad flare up due to stress of a job in January that caused me to have to spend $2,500 on surgeries to find out that it was stress in a sales based job. I didn't meet my deductible, so now I have to pay these bills out of pocket and I have been unemployed since June. The health system failed me. Repeatedly. I have $25,000 of medical debt and that was before my realization of self-diagnosis. I can barely make it paycheck to paycheck, let alone afford to pay for insurance coverage to go to the doctor. The copays alone are at least $30 a visit on top of the monthly costs. In order for me, an adult female, to get diagnosed I would have to pay $400 out of pocket to be seen for a 1 hour assessment. That price would not include a review of the results or anything else. The next assessment I found was fo0r over $1000 out of pocket. That is without insurance. No insurance I could find in my area would cover autism assessment and diagnosis anyway. I have been dismissed by a provider as having anxiety, even though I was on the max dose of anti-anxiety meds with no improvement for over 5 years. I asked for a referral for an autism assessment and was told "Why do you think its autism? I think its just anxiety. Take your meds." That was the last time I went to a mental health provider.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Costs for getting evaluated & diagnosed needs to be addressed.Another resource that is needed would be a service similar to the telephone system that people who are deaf and hard of hearing have access to, but this would be a resource that could be utilized for people who need support making customer service phone calls, during doctor visits, etc. There are times we need to call or go somewhere (doctors, IRS, Insurance company) ask a question and it is hard to not have this task trigger a meltdown. Having a third party who could help communicate and direct the conversation would help make these needed tasks doable. This third party being able to identify the meltdown/shutdown starting and telling the other person that we need a moment or help sum up what we are trying to say when we aren’t being understood, would be amazing. Overall more services in general for “higher-functioning” autistics is needed. There are resources to be found for higher needs, but it is harder to find help or support when we appear to be doing ok on the outside. Many “high-functioning” adults also hit a breaking point where they can no longer mask and function without higher support. Having services/support that are easily found for us once we no longer are fine, would be amazing.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	More people need to go to school to be doctors and therapists for autism. This should be promoted the same way nursing school is promoted; everywhere! The lastest stats say 1 in 36 kids has autism. The autistic community KNOWS its much more than that-probably closer to 1 in 10. We NEED to have more education around this. as well as ALL mental health issues.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Adult services are severely lacking, and trying to access support to navigate the process of acquiring services and supports is challenging and frustrating.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	For those who are highest on the autism spectrum. Extra help at all school levels. Many are brilliant but have trouble with daily living activities. Independent living facilities much like those for senior citizens with meal facilities and cleaning and laundry help would help those who can hold down jobs and are bright, but at the end of a day find household chores too physically exhausting.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Equitable access to insurance coverage and competent mental health therapists, psychologists, and psychiatrists.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Low cost/no cost services. Stop making it so much harder for us to get the help we need for ourselves and/or family members. A lot of us need services outside of what is mandated through FAPE and we recsntly found out that even though our son is obviously autistic and has been since he started showing symptoms at 18 months, we need to have him seen by a developmental pediatrician. He already has a pediatrician who can confirm his autism he has been evaluated 4 times since age 3 ( he is 8 now) and yet we need to get put on a wait list to have him seen by a dev. Peds. Physician just to be able to have things billed to insurance for him and even then those services are not affordable
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Define what equitable access and accessibility to services means. Increase health insurance coverage and do not separate mental and physical health coverage. Create autism advisory councils at the state level that include autistic individuals, family members, legislators, and reps from autism, medical, and mental health organizations. Create autism certification programs for teachers (even general ed teachers) that include training of co-occurring conditions and best practices for working with these students.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	equitable accessibilityof services insurance coverage early detection and early intervention during the first year of life ( for secondary prevention) Parents intervention , education about systems, suportive systems for families of autistic individuals, special complex education for families and the indidividual ppatient . etc
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Name	Anonymous
Demographic	Autistic individual
Response	Extra assistance with the ridiculous amounts of paperwork and phone calls to apply for disability Proper Accommodations
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Opportunities to interact with peers in social settings at a reasonable cost. High school programs better preparing students for employment, use of technology, life skills, and partnership with Department of Vocational Rehabilitaion to purse job readiness and employment skills and placements.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	All of the above. Insurance coverage is an issue. Many individuals have medicaid, but then many providers do not accept it. Also, the wait lists for providers (e.g. therapies, mental health, etc) are very long. I also wish there was someone to help caregivers navigate the systems. Case managers from DDD come and go and never formed a relationship. Our support coordinator helps with her budget related items, but not everything else. I wish there was someone who could help with everything - like the idea of a medical home, but specifically one person assigned to an individual to help point you in the right direction for things like accessing therapies, transition programs, transitioning to adult medicine, SSI benefits, etc. Also, the process of transitioning to adult medicine itself is challenging. She has been seen at a children's hospital system since birth. They understand all of her conditions. It is not clear where she should go next.
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Name	Anonymous
Demographic	Autistic individual
Response	Improve insurance coverage. Use subsidies to increase the # of providers. (Coverage isn't treatment access. I've been trying to get treatment for several covered co-occurring conditions for over 2 years.) Tackle structural inequality. Promote valuing people rather than productivity. Mandate flexible work arrangements for disabled people. Ration healthcare based on something other than wealth. Enable users to copy this survey's questions so they can use assistive technology from outside the browser. Non-wealth-based rationing example: Give "health dollars" ($H) to everyone. Each person, irrespective of socioeconomic status, gets enough that there's a 99% chance they'll have enough that month based on their health history (age, pre-existing conditions, lifestyle, amount owed last month). People may give excess to the 1% in need at the end of the month through a regulated system. Unused $H lose value over time to discourage hoarding, yet retain full value when donated. Fund with an automatically increasing progressive tax to avoid inflation. Refine the $H percentage through regular analysis to ensure it meets everyone's needs. This example is incomplete. One could reduce corruption (investigate donation recipients, provide a low-% cash out to out-price the black market), inspire donation (community leaderboards), give $H allocation advice, nudge prevention (extra $H for checkups or fitness milestones), and encourage trust (audits, public reporting, education campaigns.)
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	All insurance should have coverage for autistic people for therapy in all areas, speech, ot, social help ect. Help with patient advocates just like they have for the elderly. Including housing in the same manner would be helpful.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	kids who are accessing private insurance do not get access to the continuum of resources available via public insurance, such as care coordination, med management, etc. or it is accessed with significant out of pocket, which is prohibitive to many middle class families who have more out of pocket burden youth with disabilities and especially co-occurring conditions should automatically qualify for public insurance
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	More behavior modification providers. More ABA providers, especially in rural areas. More training regarding autism and evidence based therapeutic interventions such as CBT, DBT and ACT for mental health professionals. More training for physicians and nurses on how to communicate with children and adults who don't use their voice to communicate to identify physical health concerns. More public information campaigns for parents and caregivers that in addition to autism they should be aware of common physical and mental health that are co-morbid.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Best supportive living situation for people with complex autism and co-occurring conditions to keep them safe but still offer a connected, meaningful life. This would include access to healthcare, behavioral therapies and services, good food, vocational services, recreational activities, and access to the community with support if needed.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	More support for autistic adults outside of institutionalization
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Broadening the term disability to handle high functioning autistic persons because they are unable to go to public schools and require homeschooling which result in loss of income or additional cost.
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Name	Anonymous
Demographic	Autistic individual
Response	- more supports tailored to autistic adults instead of just parents of autistic children - support designed for high-masking people (we are commonly denied supports because we meet conventional markers for success but struggle greatly in places that are conventionally out of sight, but that tends to lead to burnout and subsequent decreased abilities and increased health conditions) - having consolidated centers for autism support to help people discover what supports there are and navigate the systems that are otherwise inaccessible
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Name	Anonymous
Demographic	Autistic individual
Response	All insurance needs to cover autism assessments. Include profiles (like PDA) in the assessment process. There should be an online assessment option for the immunocompromised who can not catch COVID. All diagnosticians need to be aware of autism and its profiles. I was misdiagnosed so many time (adhd, bipolar, bpd, atypical depression, etc. etc.) and none of the strategies for those issues worked. Only the PDA interventions worked and now it's like night and day! But I am over 70 years old! So many lost jobs, and relationships. So much needless suffering!
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Name	Anonymous
Demographic	Autistic individual
Response	- more intense and lengthy training for special education/autism based therapists/wrap around workers, paraprofessionals, and teachers all of whom should be required to take an ethics test every year before the start of the term. - if they fail the test at any point they are to be barred from working with any children - Along with a criminal background check, paraprofessionals must be required to have a psychology, special education, or a teaching degree along with the said above. - If reported by an adult or child & caught emotionally, physically, sexually, or psychologically abusing the child they work with or any child they must be fired, stripped of their license, and barred from working with kids again or the school will face a hefty fine. - Classrooms that have neurodiverse children should require wellness checks from the school psychologist where the neurodiverse child is to tell EVERYTHING about what goes on in that classroom. - ALL applied behavior analysis (ABA) practices and related/inspired practices within wrap around must be outlawed due to their abusive nature to convert autistic children into neurotypical kids and for inspiring gay conversion therapy - every autistic individual that is a victim of all or any of the said above, such as myself, should be paid FULL FINANCIAL COMPENSATION for every dollar that their family paid towards these schools and services from the school and the government.
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Name	Anonymous
Demographic	Autistic individual
Response	Disability for burnout
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Name	Anonymous
Demographic	Autistic individual; Other
Response	ABA therapy should not be the first choice of treatment for a child as it can be harmful and traumatizing
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Name	Anonymous
Demographic	Autistic individual
Response	Ease of Access to formal diagnosis, less costly testing alternatives, formal work accommodation guidelines for autistic adults in the workplace, support services for autistic adults with low to medium support needs
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Better pay and benefits for personal support individuals who play a critical role in supporting individuals with autism is imperative.
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Name	Anonymous
Demographic	Autistic individual
Response	There needs to be a recognized alternative to ABA (which is abusive and has primarily negative outcomes) that can be covered by insurance, so the people who have access to insurance and need help (whether parents of autistic children or autistic adults) can access therapy.
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Name	Anonymous
Demographic	Autistic individual
Response	A greater deal of education on autism should be provided to K-12 educators, physical health practitioners, and parents so that children may receive education better suited to their learning styles and so that treatment intervention may occur earlier on. Specifically, there should be better education regarding how autism presents differently in females than males, as it is believed many females go underdiagnosed due to the lack of education on these differences. Furthermore, additional education should be provided on autistic individuals who may have higher than average IQs or co-occurring conditions such as hyperlexia and proficiencies in certain subjects, as many providers see these traits in patients and believe that as a result of these "positive" traits, the patient must not be struggling with other symptoms related to autism. Additionally, as more information becomes accessible to the public regarding autism, better insurance coverage should be provided to adults who wish to seek an autism diagnosis. In terms of patient-provider interactions, a decrease in the levels of infantilization patients receive and a general increase in education given to providers would be appreciated, as well as how symptoms of autism many discourage individuals from seeking out various medical treatments (eg. sensory issues may provide difficulty for those seeking out dental procedures) in order to create a more sensory friendly environment.
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Name	Anonymous
Demographic	Autistic individual
Response	TRAUMA INFORMED CARE PROVIDERS. CONSENT INFORMED CARE PROVIDERS. PHYSICAL/MOBILITY/COORDINATION/BALANCE DISABILITY ADAPTIVE PROVIDERS.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Testing, assessments from a younger age. Society having programs available, medical practitioners trained on neurodiversity and brain functioning. Insurance coverage, support service and insurance coverage for them. A change in the educational system. We know that each child brain is different and we need to change our educational system to match science. There needs to be more support for all students, and teachers. Change how we teach, inclusion classes for the workforce (private and Federal).
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Name	Anonymous
Demographic	Autistic individual
Response	All of the above, support for adults, access to additional financial support, aids, thearpy, types of thearpy approved
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Children who were eligible for Early Start services for autism should be able to receive the same services up to age 8, not end at 3. Government-funded agencies, like the Regional Center, should be more proactive in providing and guiding resources rather than functioning on a "need " basis or "we'll look if you ask" basis as they are now. Eliminate the income threshold for families to receive autism-related services, especially from government-funded programs. The problem is that there are plenty of government-funded autism-related services out there. Still, there is no one providing a middle class or families between the poverty level and middle class with autistic individuals who cannot access resources because they make $1 over the threshold. Private sectors are charging an insane amount per service.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	First & foremost, physical & mental health professionals need to get out of their fixed mindset, & stop gaslighting us & actually listen to us. Neurodivergent bodies are different than neurotypical bodies, "normal" treatments & doseages don't work on me, or has adverse effects on me. We need community resources for autistic adults. Sensory friendly places for us to have a sense of community. We need to feel like we are accepted and belong in this world. Most of us feel like we are aliens living among humans. We feel we don't belong here. When anyone feels they don't belong, no hope, no support, no community they commit suicide. I would bet, the suicide rate is so high because it is neurodivergent people who are mostly unaliving themselves. I see patterns, amd that is a pattern I see
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	More diagnostic providers in general, insurance coverage of diagnostic screening. A diagnosis of Autism shouldn't disqualify a person from ADHD or other evaluations. Better training for teachers, psychologists, childcare providers, and others in handling ND kids. Better training for medical personnel in general in handling and listening to ND people. Better mental health services more generally. Better training for first responders in handling ND people in crisis. Teach sign language as a core part of school (and more sign language education accessibility for adults). Work culture that supports more breaks (both during the day and as Paid Time Off) and better work/life balance.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Insurance has no reason to deny people with Autism services they received as children after they turn 21. With delays in many significant areas, it cannot be expected that once this population turns 21, they are ready to be independent adults with no support. Allow all individuals with Autism funds for self-directed or caregiver-directed supports that benefit the individual. Insurance denies those with Autism who display aggressive behaviors, towards self or others, to participate in group therapy. This is ludicrous- skills needed for group therapy are best taught in group, with 1:1 support for those who need it. This is neglectful to a group of people who deserve community, a chance to make friends, and a chance to encounter people of all ages and abilities. Companies working for those with Autism should be allowed and encouraged to make relationships with the individual and their family, not abide under strict ethics codes that don't allow for Christmas present swapping between caregivers and Autistic individuals. Gift giving is an appropriate part of social communities and those skills have to be taught- they are not innately learned.
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Name	Anonymous
Demographic	Autistic individual
Response	Expanded insurance and services would perhaps be the best supports. I do not currently know what my insurance would or wouldn't cover related to autism, but I do know it would require a formal diagnosis. Many people who could benefit from services are very much barred from access because of how inaccessible diagnosis is both due to cost and shortage of qualified providers willing to assess adults who may not have appeared "autistic enough" to get assessed as children. To really help access, either increased access to diagnostic services needs to happen, or removing the formal diagnosis requirement to access services.
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Name	Anonymous
Demographic	Autistic individual
Response	I have not even been formally diagnosed because of the cost. I don’t have insurance. I have had to research for myself. So I haven’t found any help so far. Considering history and how autistic people have been viewed as a problem for society, I am unsure if I even want to be diagnosed.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Other
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Almost everything. The most important thing I can think of off the top of my head is access to anesthesia/sedation for medical procedures, and access to labs and lab techs that can make appropriate accommodations.
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Name	Anonymous
Demographic	Autistic individual
Response	More support would include everything mentioned in the example as well as: -More tested values of a solution of autism in the dsm 5. DSM 4 went from 30000 to 2000 in 2013 and people lost their diagnosis. - better operative definitions for autism. Levels don't work. It's too vague and to specific at the same time - More support for all levels of autism as it is defined currently in The dsm - More support for autistic adults - disability aid should not resign people to a life of poverty. Instead support should be geared toward helping people become stronger, more independent, and successful. Their need to be less financial restrictions to get aid and it needs ne Match the rate of inflation. - More education on what the core features of autism is for the general public.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Equitable access to health care, gender affirming care, better Medicaid, neuro-affirming care, patient-provider interactions, dentistry!!! Equitable support for all individuals with autism, including those who don't make the cutoff for eligibility for state supported services. Women with Autism!
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Name	Anonymous
Demographic	Autistic individual
Response	You literally can't get an appointment for any relevant services. Emergency rooms and gp's do not take concerns or issues seriously. Constant struggle to be taken seriously and given overall avoidance/communication issues anyway...it's not worth the fight most days.
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Name	Anonymous
Demographic	Autistic individual
Response	-offer options that allow time to reflect on answers (ie. Alternatives to phone and imperson access) -provider education -broader availability, outreach, testing
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Respite care, better paid and trained providers, access to in home care, payment for caregivers who take care of minors and adult children full time, access to services (medical, social, vocational, recreational) even for those that require a high level of 1 on 1 support and display aggressive behaviors towards themselves and others.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	It's extremely hard for me to find good Autism services as someone with private insurance, it's also extremely hard for folks who are on Medicaid because there aren't enough service providers or funding for these services. The biggest thing that I think would be helpful is having more case workers, and having them available to ALL Autistic folks, not just ones on the Innovations Waiver. For example, it takes all of my time and energy to work a full time job and take care of my home, I don't have anything left to give to trying to find services or schedule routine checkups, but because I work and pay bills, I'm considered completely independent, which isn't achievable even for able-bodied people/.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	To be able to get help easily and not have to reapply every 6mos-1 year. We miss out on services because of these forms. To get support if a professional in health care. For the government to help health care professionals to be able to take insurance so autistics can help broke autistics
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Name	Anonymous
Demographic	Autistic individual
Response	doctors seriously lack knowledge about congenital neurological conditions when i can't talk right doctors just talk over me and they don't help give me words which i'd like a lot if they would think about what i'm trying to say but saying ineffectively and they would be patient and help me talk i especially have problems wording what's happening to me. i wish doctors would help me say things i'm having trouble saying and actually listen to me instead of talking over me or talking to mom instead of me. a lot of symptoms i have especially with my heart are hard for me to describe i also wish more doctors would be like my urologist who actually treated me like an adult not a child and when i was scared of a test she explained to me how the test worked and told me she had been scared of it too in the past, instead of telling me i'm being childish and stupid or telling me that if i don't do the test she can't help me. i did the test and i felt better because she was nice to me. but nobody else ever did that it's also so hard to get diagnosed with a congenital condition if you weren't diagnosed as a child because doctors who only see adults don't know anything!!!!! teach them about congenital conditions!!!!!!!!!!! the only doctors who ever knew anything about my condition were doctors who worked in pediatrics too!!!!!!!!!!
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Access to therapy
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Improve requirements for SLP training programs and/or have insurance pay for RBTs to correct with SLPs. Most SLPs will have autistics on their caseload and many are not trained to work with autistic people. As a generalization the SLPs my son has worked with requires me to manage child’s behavior and help facilitate the session. This was common occurrence in early intervention, private practice (that takes medical insurance). Better pay and benefits for BCBAs and RBTs is needed to attract and keep competent professionals in the field. This would help improve accessibility to treatment.
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Name	Anonymous
Demographic	Autistic individual
Response	Require all pediatric, family primary care and psychological providers to be fully educated and certified in the understanding of the internal lived experiences of neurodivergent individuals and to erase any preconceived notions of what they think these conditions are.
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Name	Anonymous
Demographic	Autistic individual
Response	Better access to qualified mental health professionals for diagnosis and support, and better insurance coverage of mental health services in general.
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Name	Anonymous
Demographic	Autistic individual
Response	Patient-provider interactions need major improvement. I've had my concerns dismissed by so many doctors that I've given up on getting any kind of help for gastrointestinal and sleep issues, and non-autistic mental health professionals are extremely unprepared to work with autistic patients. I've almost never had one help me in a way that worked for me. More provider education on autistic needs in general and on the negative effects of masking would make a huge difference. I don't feel understood by doctors and therapists and it feels like they would rather that I look normal than feel happy. More acceptance of sensory supports in the workplace without disclosure of disability would also be a great help, as would decreasing the effects of stigma in work environments. Disclosure usually results in people dismissing my strengths and only seeing my weaknesses at present. Accessible education on how to navigate insurance would also be very helpful, as that whole system is deeply confusing to me. Accessible sign language education would also help a lot. I think in gesture, and I've been struggling to learn ASL as a way to understand my own thoughts more coherently. It would also help with communication when unable to speak.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage is a massive issue. A lot of policies will not cover evals, but will cover dog training for Autism? Why are we gate keeping AAC devices and ADHD meds even when research shows that doing this is actually incredibly harmful? Medical/Educational professionals’ understanding of both disorders is abysmal-Especially in General Practice/Pediatrics and K-12th public schools. School staff seems to think that just because a doctor says your child is Autistic, that doesn’t mean they are at school?? A doctor diagnosis should be the only requirement to get support at school or work. Financial support for adults needs to be accessible and truly beneficial—most of us cannot work full time if at all, and the way benefits are set up make it difficult to qualify for them even if you have a confirmed diagnosis. PCA pay needs to extend to parents of Autistic children without applying for disability. This helps Autistic parents care for their Autistic kids and fills the financial void of not being able to work.
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Name	Anonymous
Demographic	Autistic individual
Response	Get rid of ABA services. Create more non-ABA resources that provide services that teach people how to make places/people autism-friendly. Create more services that provide things like peer mentors to help autistic folks with daily tasks. Create more programs that provide (free or inexpensive) accessible transportation. Create more programs that provide free housing for autistic individuals because working is often extremely difficult and sometimes nearly impossible for a lot of autistic people, and most of us who can work aren't able to earn enough money to support ourselves financially. Educate first responders and doctors on how to interact with autistic people (including those who may not "seem" autistic)
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Name	Anonymous
Demographic	Autistic individual
Response	Professionals in the healthcare system and mental health system all need to be trained in autism. As an autistic person, I know more about it than all of the health professionals that I have encountered who tried to help me. It needs to be more understood before they can implement the changes that we need. Things that would help the most would be financial support and peer support groups in every city. SSI/SSDI is a flawed system that allows most autistics to fall through the cracks. Autistic people struggle to support themselves and most are unable to work, especially full-time. Anything at all that could help in this area would make a drastic difference in our lives. There is also an extreme lack of in person peer support groups, which leads to further isolation.
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Name	Anonymous
Demographic	Autistic individual
Response	See previous answer. Medical providers REALLY need better training on what being on the spectrum means instead of assuming each of us is going to behave the same way. Just include things like sensory questions on medical questionnaires for a start. Employers need adequate training on this. Public service providers should have a better awareness overall of things like ADA in terms of service dogs, aids, etc. every time I go into a store that says bags are prohibited, I have to decide whether I bring it in (has my aids like a cane, panic meds, headphones etc.), leave it to avoid the anxiety caused by the potential interaction, or choose just the MOST important items - which causes more anxiety.
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Name	Anonymous
Demographic	Autistic individual
Response	services for autistic people over 18. a lot of services stop at 18 and this makes things difficult for those who still need services like aba, OT, and speech when they age out.
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Name	Anonymous
Demographic	Other
Response	Education addressing the public at large as well as employers. Many accommodations that can help an autistic/neuro-divergent person are largely agreeable to the general public as well. Getting the public to see that things like remote work and flexibility help everyone not just the neuro-divergent person.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	More coverage for speech therapy, mental health, occupational therapy, and physical therapy. Less coverage for ABA. More respite care for care givers. Supports in the general public sector would be overall increased education especially with the police force to be trained on recognizing autism and responses to it.
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Name	Anonymous
Demographic	Autistic individual
Response	-Social workers for individuals with autism so that care is more coordinated and scheduled -Better patient-provider interactions -Doctors that actually want to help people and not just push medications
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Access - both location and not months and years long wait lists Affordability A resourched for what is available and how it could help, steps to tak with a new diagnosis, etc. Support for parents and siblings
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Name	Anonymous
Demographic	Autistic individual
Response	Early intervention and easier access to IEPs would exceptionally help autistic children I believe, and helping both the child and the parents understand what autism is and what it means for them going forward. Insurance coverage would also help because things like physical therapy, learning programs, ect, are incredibly expensive if not covered by insurance.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Insurance tends to be very descriminatory for many mental illnesses, autosm included. If we had access to better coverage perhaps they would not struggle so much with finding adequate care.
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Name	Anonymous
Demographic	Autistic individual
Response	All the above.
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Name	Anonymous
Demographic	Autistic individual
Response	Equitable access to disability services and medical care is crucially lacking for many Autistic people. Health care of any kind is expensive, making cost a significant barrier. Autistic people often cannot work or cannot work "ordinary" jobs so money is tight already. A health care system that removes barriers to entry and use for all people is essential for public good and for Autistic people to get the care they need.
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Name	Anonymous
Demographic	Autistic individual
Response	The bureaucracy itself is a massive hurdle. Our executive functioning problems make navigating health insurance and government paperwork SIGNIFICANTLY more challenging than normal, the processes need to be streamlined and/or we need specialists to navigate us through the process. Many people on the autism spectrum especially struggle with phone calls, so having a text-based service would be very helpful. It’s also particularly difficult to access workplace accommodations due to discrimination and lack of knowledge from both employers and coworkers. There needs to be more efforts around disability education and training. People on the autism spectrum also need more access to remote work. Remote work solves the majority of workplace problems.
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Name	Anonymous
Demographic	Autistic individual
Response	Are there systems in place to help "high functioning" autists? Most of us are unemployed, we need financial help more than anything.
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Name	Anonymous
Demographic	Autistic individual
Response	This entirely relies on getting the correct information in front of the eyes of doctors teachers and service providers who will be taught and required to follow rules and procedures specific to working with autistic people. This needs to be a law. They need to understand how we work different and what we need different. They can scoff at it as much as they want but if they act inappropriately and offensively to autistic people they should have their ability to work with us reprimanded and removed. Get people out of these positions and hire/elect those who are willing to follow procedure when it comes to providing care to autistic people.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Patient-provider interactions are a tough spot. Most of my providers ignore my autism diagnosis. This is good in some ways because I’m treated like a competent adult, but I usually have to find out something is a common co-occurring condition from other autistics instead of my doctor.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Undiagnosed autistic people are in a Catch-22 scenario. 1. Autism creates problems with social interaction, which creates difficulty getting jobs. 2. No job can mean no insurance and no access to healthcare. 3. No healthcare means no ability to get diagnosis. 4. No ability to get diagnosis means no access to benefits. So undiagnosed autistic people can't get diagnosis without a job, but can't get a job without diagnosis. I spent $3700 and got professionally diagnosed after suspecting my own autism for nearly 20 years. I went 20 years without diagnosis because of this problem, before I finally made enough money to pay for diagnosis out of my own pocket. ****Please make autism diagnosis free for undiagnosed people.***** The U.S. has millions of undiagnosed autistic people.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Universal healthcare and basic income would be the most beneficial.
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance coverage, loweing prices, educating providers on autism. I have had medical providers miss key information because my symptoms present differently. For example, ny face often goes slack when I am overwhelmed, even when in intense pain.
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Name	Anonymous
Demographic	Autistic individual
Response	Making resources easier to access and more affordable. It's not uncommon for families like mine to pick and choose what we need to treat because it's too expensive to take care of my mental and physical health at the same time for long periods of time. Even though my parents are lucky enough to have good insurance insurance only pays for so many things and it gets us stuck in this cycle of prioritizing one aspect of my health until the other becomes so bad we have to switch. I wish I could treat both at the same time
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Name	Anonymous
Demographic	Autistic individual
Response	Equitable access to therapists, work accommodations, insurance and school accommodations.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	healthcare providers need to find better ways to communicate with patients in ways that don’t have barriers such as requiring phone calls. communication also needs to be more clear cut
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	n
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Name	Anonymous
Demographic	Autistic individual
Response	ACCESS TO AUTISM DIAGNOSES THAT ARE FREE OR AFFORDABLE. Currently it costs at least $1-2K to get diagnosed with autism, with or without insurance. This has created a climate where: (A) Treatment and medication are extremely difficult to access; (B) We have no idea what the actual prevalence rates are, let alone demographic breakdowns; (C) Self-diagnosis is extremely common with or without meeting the diagnostic criteria; (D) Self-diagnoses are recognized as valid by the autistic community out of necessity, but are not taken seriously outside the community; (E) the primary source of information about autism for the youngest generations is TikTok, a social media company that is highly censored by the Chinese government and is also known to use highly unethical data collection practices. Tiktok is also how I heard about this request for public comment, by the way.
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Name	Anonymous
Demographic	Autistic individual
Response	- EQUITABLE ACCESS TO AND ACCESSIBILITY OF SERVICES, ESPECIALLY EVALUATIONS -- insurance should be covering this, it is not - More therapists specifically specializing in "high functioning" autistic adults. I was incredibly lucky to find one with an opening, and honestly would be in a much, much, much darker place in my life - Education of educators, employers, and administrators on both "high" and "low" functioning autistic needs -- we tend to be ignored/not taken seriously because allistics simply don't understand how our processing can be so different from theirs.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Flexible choices for health services, AAC access for all, insurance coverage for therapies not specific as ABA, easier access to paraprofessionals in the school setting, caregiver support in the home for families, respite care for families, education for government officials such as police officers, first responders, health providers. Sensory tools for homes.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More Accessible and Equitable access to services especially community-based services. My son has faced termination out of community programs prior to his autism diagnosis. He has also faced isolation due to his challenging behaviors and lack of resources for providers in community programs. There also needs to be more regulations around denial of services even before an autism diagnosis. More understanding on how Co-Occuring conditions impact our children and loved ones with autism . It’s not them, it’s their brain and how it is wired . Sometimes it’s the story behind the behavior that a lot of people don’t hear. My son spent his young infancy and toddler years in and out of the hospital, on and off a Heart and Lung Bypass machine . PTSD from medical trauma can play a major role in the behaviors seen, but also his inability to communicate his feelings or being heard is another part .
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance only exists in the US if you have a good enough job to get it, which is a huge obstacle for autistic people. We also have to address individuals at every point in the system not caring about their legal obligations to help disabled people and just disregarding us entirely.
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Name	Anonymous
Demographic	Autistic individual
Response	Making it easier to get assessed would be helpful. Most the people I know who believe they’re autistic have done a great deal of reading and reflection to come to that conclusion but have been unable to get a formal diagnosis. Also making services more accessible would be useful.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Talking to low and high functioning autistic people about the relevance of the support that is being added, seeing if that support also works for intersectionality such as if the autistic person is a person of color or wheelchair bound, and openly listening to autistic people's feedback when it comes to the current system that is in place as well as any other systems that are added in the future.
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Name	Anonymous
Demographic	Autistic individual
Response	There is a lot of room for improvement in this area, the greatest of which being that people that work with autistic individual should better know their needs.
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance coverage. Getting diagnosed with autism is really expensive and most autistic adults are unable to hold a job. Getting diagnosed with ADHD is also expensive and should be covered. For that matter, getting diagnosed with anything should be covered because it’s a necessity for most people with disabilities.
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Name	Anonymous
Demographic	Autistic individual
Response	A wholistic testing facility that can run a thousand tests on the entire body, during a one day to one week, annual visit would be beneficial to everyone, but especially autistic people.
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Name	Anonymous
Demographic	Autistic individual
Response	Just about everything. I don't even think too many would be mad if the diagnostic criteria and corresponding treatments at a foundational level was gutted and redefined by the autistic community. So much of what's widely accepted about autism comes from the perspectives of people who aren't autistic, and many with blatant histories of eugenics and abuses of disabled people, addressing how they're affected by autistic people rather than understanding fundamentally what necessitates certain behavior and what differentiates autism as a neurotype. Autism is highly complex and very individual, meaning it looks different in all kinds of people who have it. Diagnosis is often expensive, and even with the cost, most of the research done is on young white male children, so virtually every other demographic is underrepresented in research, diagnosis, and receiving proper supports and accommodation. Misdiagnosis (particularly in the vein of depression/anxiety, BPD in women, ODD in people of color, etc.) is rampant. Care providers are widely not trauma-informed, and don't understand how their treatment of autistic people can do more harm than good in many cases, and especially not of those who aren't properly diagnosed to begin with. Services and supports are among the least accessible and least trusted infrastructure in place for autistic people, and barriers to success exist at every step of the process.
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Name	Anonymous
Demographic	Autistic individual
Response	IAT and Psych evals for ASD diagnosticians, honor requests for ASD testing, insurance coverage for adult testing, employer benefit-incentive for hiring/mentoring/promoting full-time ASD individuals (especially in their qualified, special interests), enforcing CROWN act nationally (Black women with ASD)–more Black psychiatrists and psychologists specializing in ASD and co-morbidities who are not religious, socially conservative, elitist, sexist, and homophobic—and do not espouse or engage in respectability politics. Also, young, inexperienced, and provincial educators and administrators are causing psychological harm and trauma, while impeding natural academic gifts, talents, and ability to socially adapt while inhibiting students self-concepts. EXPLICITLY warning parents/guardians of the long-term effects of avoiding intervention or hiding their child’s Dx from the child.
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Name	Anonymous
Demographic	Autistic individual
Response	A panic room. A quiet place to go with dim lighting should be included in all spaces that can become overwhelming
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Name	Anonymous
Demographic	Autistic individual
Response	Actually being able to diagnose people who aren’t 5 year old white boys. Patience. Kindness. Doctors to be trained on what autism actually is.
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Name	Anonymous
Demographic	Autistic individual
Response	Equitable access to services, insurance coverage, marriage equality, lack of withholding or societal mobility due to diagnosis, concessions in relation to demonstrated needs
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Name	Anonymous
Demographic	Autistic individual
Response	I think that in a typical situation becoming diagnosed or receiving allowances for autism comes at the cost of societal respect. This is then reflected in the support we may receive and its effectiveness. I think in educational or working environments specifically more support is often needed, especially in terms of accessibility. I also think doctors and other professionals either ignore a diagnosis or discredit the autistic individual.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I can't speak to traditional autism services (e.g., ABA), as myself and my child were told we are both ineligible since we're Level 1 Autistic. My Autistic teen does need executive function coaching because she's struggling in school and with daily life functions, which I was told isn't covered under insurance. I'm paying for it out-of-pocket at $100 per hour, which is a financial burden. The psychologist who did my autism evaluation said I need to find a therapist who specializes in autism masking. She said my masking score is the highest she's ever seen (160s) and I'm in Autistic burnout. Such therapists that she's knows of and that I've found are private-pay only, so I can't afford one.
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Name	Anonymous
Demographic	Autistic individual
Response	Services should be made accessible with accommodations for those with different ability levels. Autistic people should have advocates who are trained to understand the autistic experience.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Autistic adults have limited resources and many, even those without intellectual disability, are unable to work enough to support themselves. Some have above average to high intelligence but lack executive function or struggle with sensory and communication issues in the workplace. Adults need a lot and are not getting it. I meet with other parents of adults in a support group and we are all terrified of what happens to our "kids" when we are gone. They need: -Healthcare: they should qualify for Medicare and Medicaid. It is a lifelong disability with comorbidities. Make employers allow parents to cover autistic kids over age 26 on their insurance plan as a disabled dependent. This is currently optional, it should be mandated. -Workplace support and accommodations -Housing: if the autistic person qualifies for SSI (they should and often get rejected) the housing options are very limited and require navigating a system that is difficult for persons with executive dysfunction. At best, there are group homes living with intellectually impaired individuals. This is not a good mix for autistic people due to sensory issues and self-esteem/stigma. A care manager type or navigator to help with access to health and housing services is needed badly. I am afraid we are going to see autistic adults become homeless when their parents die. There is no support system in place for them. They graduate high school and there is nothing for them.
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Name	Anonymous
Demographic	Autistic individual
Response	Improvements in autism services should focus on: 1. **Integrated Care:** Enhance coordination among providers for comprehensive support. 2. **Tailored Interventions:** Design interventions specifically for autism and co-occurring conditions. 3. **Early Detection:** Improve screening to identify co-occurring conditions early for timely intervention. 4. **Professional Training:** Provide education for professionals to better address co-occurring conditions. 5. **Family Support:** Strengthen resources for families to manage challenges associated with co-occurring conditions. 6. **Advocacy and Awareness:** Increase public awareness to reduce stigma and enhance understanding. 7. **Research Funding:** Allocate resources for research on autism and co-occurring conditions for evidence-based practices. These measures aim to create a more inclusive and supportive environment for individuals with autism and co-occurring conditions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	My child only could receive 60 sessions for an entire year that combined all his therapies for Speech and Occupational therapy. we are pink so much money to have insurance just to be cut off even though we are told that our son needs therapy on a weekly basis. Just because you get a diagnosis doesn’t mean you have access to services which is absolutely disgusting. Having to fight for your autistic child is so exhausting. We were almost denied occupational therapy, even though my child is significantly delayed in all motor skills. This would cost us $18,000 plus out-of-pocket. How can People sleep at night, knowing that you’re denying a special-needs child to help they need. Or if my child doesn’t improve enough during his therapies, he can also be denied because he’s not making improvements… He’s autistic and insurance expects miracles to happen when he just might need more time to master skills of his peers. ABA needs to listen to the autistic community, examples no hand over hand, or bribing with food, no stopping stims -unless harmful.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Equitable access is probably the thing that could be most improved on. People should be able to have services readily available to help them, without too much expense.
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Name	Anonymous
Demographic	Autistic individual
Response	not forcing people who may need support in any fashion including financial to be in section 8 housing when the reality is that they may be able to and want to work and only need supplemental support.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	More access to funding for experienced and licensed staff for community mental health agencies. Behavior coaching, not ABA. Housing for the unhoused, IQ/autism screenings for the unhoused, then follow thru with stabilizing the unhoused.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I don't know if this whole "co-occuring" thing is an attempt at intersectionality, but the answer is intersectionality. If something is racist it will negatively impact autistic folks. If something is sexist it will negatively impact autistic folks. Every single person in this country is less safe without universal health care. Every single person is less safe without universal housing. I will not leave anyone behind because my safety is dependent based on the quality of life of those around me. The best way to help autistic folks is to help everyone.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More and better Insurance coverage so all individuals have access to the adequate and right services. Many autistic individuals require lifelong intensive therapies that go beyond what insurance will approve.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Services and supports are not cognitively accessible for people with significant learning disabilities or intellectual disabilities. Moreover, many services are not financially accessible to autistic people living off of SSI/SSDI or who are otherwise poor.
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Name	Anonymous
Demographic	Autistic individual
Response	ADA protections that address communication differences. The way the ADA is written currently, almost no existing accommodations would be reasonable from the employers perspective obviating their legal requirements to accommodate.
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Name	Anonymous
Demographic	Autistic individual
Response	Being able to group together certain resources while also working with an individual on their conditions as needed versus trying to limp all conditions together under an umbrella
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance for autistic children is a must. With mental health coverage and dental services. These children with connective tissue disorders have high pallets and issues with teeth placement that need to be addressed. Depression anxiety needs to be dealt with as young children to help prevent PTSD as they get older. Parents don't know how to deal with IEPs and 504s and rely on teachers who aren't educated in how to deal with autistic children. Half the time you have to fight even to get services.
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Name	Anonymous
Demographic	Autistic individual
Response	The services available to those who have autism are lacking particularly for those who are near or below the poverty line. Autistic children require more time and money to care for because they have special needs and requirements, which can be very hard to access if you are not in the middle class, and even then it can be a struggle. On top of that many times if a family has an autistic child or relative that is unable to provide for themselves they look for a care facility that can provide said relative with all the care and support they need. However in many states in the U.S. it may take years for a spot to be available, and if a spot does open up it requires that the guardian stays in that state. However if the guardian moves to a new state then they have to start the whole process over again. Insurance has a lot of gaps in it that make it difficult to get a diagnosis of autism, and even once you have it they also make it challenging to get medication and treatments, it can also be more expensive and harder to get too, since it is seen as a pre-existing condition because it can cause health issues.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	More training on LGBTQ+ issues in autism and more education courses being accessible for autism support providers.
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Name	Anonymous
Demographic	Autistic individual
Response	More services for adults. Programs like self direction. More mental health care. Help with navigating through systems for parents of autistic kids and for autistic adults.
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Name	Anonymous
Demographic	Autistic individual
Response	*good health insurance for the myriad of co-occuring health issues *support for executive functioning- help with scheduling and staying on top of appointments *easier and better access to disability funds, and allowing us to save money for the future. (the unemployed 85% of us don't work because we can't, not because we don't want to) *requiring medical professionals in the area of Autism/ ADHD/ neurodivergence to stay up to date with new and emerging research. *easier access for all medical providers to understand new research pertaining to Autism
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sensory rooms everywhere possible. Just like wheelchair ramps are required for accessibility, sensory rooms need to be more commonplace. The number of individuals diagnosed with Autism is significant enough to warrant a closer look at how we accommodate them. Low lighting, low noise, a place of refuge for sensitive individuals.
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Name	Anonymous
Demographic	Autistic individual
Response	Have any. Autistic support is very rare, its a joke within the autistic community that there is no support. We need understanding. Autistic people are extremely diverse as are their needs. Many doctors have very outdated information about autistic people and never bother to learn more. This outdated information is harmful. A course for any worker in medicine whether physical or psychological should be mandatory for longer practicing people
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance needs to cover more than just ABA. It needs to cover physical and occupational therapy for autistic people as well as new and experimental treatment. ABA has been scientifically studied to show it causes trauma and does not help and yet it is generally the only treatment covered and suggested by doctors. There also needs to be far more education for the general medical population of comorbidities. If a patient is diagnosed with autism, they need to be checked for EDS and POTS and mental disorders and vice versa. Anyone being evaluated for ADHD needs to be evaluated for autism as. These should be automatic processes.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Autistic individuals need explicit protections under federal law, including an equal minimum wage, accommodations for sensory or other issues that may come up during work/school/etc., a more expansive coverage to insurance, a fundamental change in school systems to normalize existing with autistic individuals in everyday life alongside ensuring they have the support systems needed, and an extensive education system for medical providers to better understand how autism manifests in individuals and how to respect autistic people while providing the medical assistance they are entitled to.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	First there needs to be research, then education. If no one is aware of our experiences and needs, they cannot so much as sympathize for us. much less accommodate for us. People with disabilities are treated badly by our government. They put caps on how much we can earn, keeping us poor. They make it hard for us to seek treatment and to continue it. There are problems in the work environment that extend beyond accommodations for people with disabilities. There aren't even accommodations for people without disability. A lot of it boils down to stress management. I got arthritis and lupus not only because it can be genetic, but because it was triggered by stress. Not being able to take time away from work was hurting my body. Pushing myself past my limits only made me more sensitive. Not stronger. This doesn't only happen to autistic people. It happens to others without them knowing. Allowing us to live would open the door for everyone else to ask for the accommodations that they deserve and that's not something that people want to pay for. Access to healthcare, coverage for that care, job safety so that we are not discriminated against, actual work accommodations like being able to sit, take breaks, take days off work without risk of losing our jobs. There are some tasks that some of us are just not able to do. We should not be forced to make ourselves seem less able. we should be focusing on the areas where we match and even exceed the abilities of others.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	In my experience, I have seen how the traditional school system has failed autistic individuals. I think that autistic individuals are seen as less than because of their autism. I think that one of the biggest things that could help autistic individuals is a change in perception. There is discrimination against autistic individuals at every level. This leads to inadequate care for co-occurring conditions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	There is a lot lacking in adult diagnosis. Mental health was so stigmatized, that many missed the diagnosis, and are now living a life without all the knowledge or tools that they need to be successful.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Gun laws now!
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance Coverage, Accessibility of Service, Service System Issues and Patient-Provider interactions. All of these things need help. Insurance doesn't always cover Autism diagnostics and they are extremely expensive. Even if your state has a law that requires it be covered you may still need to pay out of pocket and then attempt to be reimbursed which is a miserable experience. Other than that assessment services are hard to get because if they are covered under insurance the wait time can be months, on average, and if they're not, I refer back to the exorbitant cost. Service wise systems still require too much direct human contact. There's no real reason why someone should be required to call to setup certain things. We live in a day and age where accessibility is a Federal law and in my experience, working in the tech field, there's no rational reason why we cannot extend this to those who struggle with everyday interactions. Lastly, Patient-providers should be required to have certain understandings or do certain trainings before interacting with someone suspecting they may have certain conditions. I've interacted with many providers who are just completely lackadaisical when it comes to interacting to someone who says they have Autism. It's significantly worse if they don't feel like you seem autistic. Why bother trying to get help if you know that may happen?
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage! Therapy for autistic people is way too expensive! Providers also need to have more time spent with autistic adults!
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Name	Anonymous
Demographic	Autistic individual
Response	I've hit on this as the primary challenge already. The whole system is not geared for people who need help identifying their own symptoms, who learn slowly and are less inclined to just 'do' what they are told as opposed to understanding thoroughly and agreeing to the course of treatment which takes longer and requires more patience from the provider. Don't get me started on insurance but that is a nightmare for anyone especially those easily overwhelmed. I suspect we pay more for health care cuz we give up or don't contest mistakes.
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Name	Anonymous
Demographic	Autistic individual
Response	Personally, I didn't have the language, let alone the professional help or accomodations, to function with my autism for the majority of my life. Accomodations for autism arent accessible in most places in the most places in this country what-so-ever. In addition, there's tons of resources and organizations that work actively against what would serve the autistic community. Tons of proven to be ineffective and harmful charities and therapy options, often targeted towards young children, are what's pushed to the forefront of Autism discussion and treatment. I think the way we decuss and navigate autism, as a result, must radically change and evolve as our understanding of Autism does as well.
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Name	Anonymous
Demographic	Autistic individual
Response	It is incredibly difficult to find affordable healthcare for those of us with both autism and physical health conditions. Autism testing excludes the possibility that the patient could also have physical health conditions. Accessible spaces or entrances often don't have clear instructions or require calling ahead to request access which in turn makes it harder for those who may have difficulty speaking or making calls. It makes it harder for those of us who need clear instructions, have memory issues, or have difficulty completing tasks on a deadline. Having access issues already addressed that doesn't require waiting for the key to a bathroom (as many autistic individuals have trouble determining when they need to go) or waiting for a ramp to be put down would be better. If these accessibility needs were already integrated without having to "request" them, it would make navigating the world a lot easier for us.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	I think education and accessible information on the vastness of autism is important. We can hope that this will help non-autistic people to better understand what it is like internally. Insurance coverage may also be helpful, as I often avoid medical assistance due to the cost. For example, I need to warn anyone around me to not call for an ambulance if I faint, because I can not constantly afford that bill.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Access to diagnostic, supportive, and therapeutic intervention for adults
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Name	Anonymous
Demographic	Autistic individual
Response	Universal healthcare so we can access the care we need without fearing for how we will pay for it. Help us get and retain employment which will allow us the conditions to survive capitalism.
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Name	Anonymous
Demographic	Autistic individual
Response	i would like for therapists and (some) doctors to not treat me like a child when i tell them i have autism
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Universal healthcare, universal basic income, autism services for adults with all levels of autism, more autism education for service providers, less pressure and more pay for all medical staff, so they feel allowed to take longer to communicate with patients of varying needs
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Accessing any services is a nightmare for anyone with autism, either as a parent or as a patient. The arbitrary forms and various levels of bureaucracy make accessing the very things we need almost entirely inaccessible by virtue of what we struggle with. Beyond that adult services outside the most extreme cases of complete disability with another caregiver need to exist. Services to help people fill out forms, services to help people navigate bureaucratic processes, to understand and gain help in the job search and application processes. Many of us live on our own, have families, and otherwise are functioning adults who are endlessly burning out because there are zero supports for anyone who "looks functional" on a surface level. Asking for help filling out "simple" forms and melting down due to overload when you are a PhD student is something that you get laughed at for. Beyond this, navigating the healthcare system with two disabled children who are autistic and have health issues is a nightmare for even a neurotypical parent. I do this as an autistic ADHD parent with disabilities. Yet I am distrusted by professionals to accurately report about my children the moment I disclose my diagnoses to them. The lack of education about autism beyond stereotypes within both the medical and psychological fields is appalling.
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Name	Anonymous
Demographic	Autistic individual
Response	The ability to make appointments through text message. Simplified wording on insurance and intake forms Greater understanding of what trauma can look like in autistic people Coverage of therapies besides ABA (such as speech, OT, etc.)
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Name	Anonymous
Demographic	Autistic individual
Response	Mental health and well-being as well as identification and diagnosis.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Providers in general just know nothing about autism. As an autistic person seeking support from therapists and doctors, they have done massive damage to me because of their assumptions of what's needed, when what's needed for an autistic person is vastly different. The interventions designed for allistic people, when applied to us, harm us. Please educate all providers about how autism looks and what we need. For example, EMDR can be damaging if it becomes a type of exposure therapy, because many autistic people can't habituate. So instead of improving symptoms, it can worsen symptoms.
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Name	Anonymous
Demographic	Autistic individual
Response	Literally everything. I got diagnosed two years ago and It should be a standard of care to give resources for people who are self-diagnosed or formerly diagnosed so that they can actually understand how to accommodate themselves and help themselves past a piece of paper saying that some individual with a bunch of experience says that you're not crazy. This stuff is actually happening to you. More financially accessible services and protections are always hopeful. We do not have enough currently.
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Name	Anonymous
Demographic	Autistic individual
Response	We need more supports for caregivers of autistic people. Caregivers can become isolated and overworked. It’s not good for the parent or the child. We need better treatments that are not ABA therapy. It is often abusive and basically just teaching a child to suppress their autism rather than how to cope or manage it. We need to end the abuse that happens to autistic people in mental institutions. We need better support for those who are higher functioning autistic. Such as classes on how to socialize. This should be content found in a communications class in college. This is the study of how to have relationships with other humans! We also need to better educate students about how to treat autistic people. Because people often ostracize us without even telling us what we are doing wrong. We need more support in the workplace. Such as training for how to work with people who have autism. Such as being specific and clear on how a task should be done.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Better training for health and education professionals
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Providers need to be better trained. Autistic adults are not children. They may need some accomodations but there are 3 levels of autism for a reason. Talking down to a full fledged adult is beyond insulting and results in the provider refusing to hear the patients concerns. Infantilizing autistic adults is my #1 grief with the medical system. It sets off alarm bells when it shouldn't.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Services for adults!!!!!!!!!!!! Especially adults not diagnosed as children.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I don't even bother to tell doctors that I'm autistic, because I don't have a formal diagnosis and from what i've heard from the autistic community, it's unlikely they'll believe me. So the first step is making diagnosis cheaper and *way* easier to access so that doctors can even *know* that these are co-occuring conditions. The next step is a lot of doctor education about autism, how to treat autistic patients, and what kinds of conditions are likely co-occuring ones. Also, accessibility of what services? Services for autistic adults are few and far between and as far as I can tell, focused on autistic people who are non-speaking and/or intellectually disabled. Which is an important population to serve, but there are a lot of us out here who don't fall into those categories, and we need help too.
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Name	Anonymous
Demographic	Autistic individual
Response	Having case workers available to help those with autism and other disabilities navigate the complicated system. They would help them apply, learn what they qualify for, and help them keep track of everything. As an autistic person it's very hard for me to navigate all the services. I rely on my family to help me but not everyone has that. There needs to be a third party available to connect people to services. More independent housing services for autistic people.
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Name	Anonymous
Demographic	Autistic individual
Response	ABA needs to go away. It is abusive and more then half of autistic children end up with PTSD because of it. Quiet and snesory rooms need to be aviable in every school and place of buissness for autstic children, autistic adults, and autistic employees. Autistic and other disabled empolyees have to be pay the same mimnum wage as their neurotypical and able-bodied coworkers.
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Name	Anonymous
Demographic	Autistic individual
Response	I think first and foremost ease of access is needed. The systems society operates on are inherently disabling to us, so any programs or assistance centered in those systems are more difficult for us to access than they should be. It seems there is more concern around making sure only those who really need help get it when it should be making sure anyone who might need help has the ability to get it. A net rather than a filter, in other words. Catch as many as possible, who could need help. Easier entry would look like anyone who suspects they qualify for assistance gets a neurological advocate who understands the process and can help get the potential recipient of services through any necessary assessments and form submissions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Single payer healthcare for all. Access to experts. Easy to navigate resources online developed and monitored by NIH
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Name	Anonymous
Demographic	Autistic individual; Other
Response	There needs to be an alternative to ABA services! ABA can be done in a way that is not harmful, but many times it is not and should be only for cases of extreme behavior or other challenges wherein not using ABA would be more harmful to the individual than the ABA itself.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Teleworking! we don’t want to see people. MDMA and psilocybin therapy Job finding services at companies that pay 6 figures, not Goodwill. High-performing burnouts have capabilities when accommodated. Community food services. i struggle to feed myself and can’t afford to eat out so i call it “fasting” to be socially acceptable. Abolish IVR phone systems - let me press the [profanity redacted] button yall can’t hear me and i don’t wanna repeat myself ADHD meds have too many controls in place for those who thrive on routine and struggle with executive functioning, waiting in lines (PDA), and time blindness. Also get off the marijuana high horse. y’all made getting diagnosed and medicated soooo [profanity redacted] hard we self-medicated for years with weed and then the Doc says ya gotta give up this thing you know works and been using for years so we can give you exactly 30 days of this med the manufacturer keeps messing with and works somedays but not others and makes your body feel like it’s jacked on speed cuz moving around like a chicken with your head cut off all day isn’t gonna leave you in incredible pain!
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Insurance, accessibility to services that are friendly to people with autism (sensory needs), presentation of health information in multiple forms such as verbal, writing, visual, etc., patience from health providers to ensure good communication that allows both the patient and provider to understand what each other is saying, telehealth.
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Name	Anonymous
Demographic	Autistic individual
Response	There could be more access to affordable sensory aids. I observed that although I can access aids such as noise canceling headphones, many people in the autism community who are low income can not afford to buy the aids they need. People with autism if included in Social Security benefits for disability should have a higher allowed income. The maximum income per month is only allowing for the individual to care for basic neccesities, such as taxes/rent, groceries, and not much else.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Pediatricians and doctors should be trained in symptoms beyond early childhood and ESPECIALLY how females present, which can be completely different. They should be trained to see the non-obvious cases and we need WAY more testing. I have been on a waiting list this whole year for my daughter with no end in sight. I am also curious to know if anyone has a synesthesia link. I have numbers and calendar synesthesia. And I am curious to know the links with the scientific professions as well as professional musicians. It seems that a LOT of professional musicians have autistic children. Maybe the parents are also undiagnosed too?
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Name	Anonymous
Demographic	Autistic individual
Response	Insurance coverage and training that encourages medical professionals to take us seriously. And if they aren’t willing, they should be encouraged to refer us to someone who is willing to help us.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My health insurance doesn't have enough therapy appointments nor providers in my area for my sons issues to be properly address (despite what Cigna's website claims for providers in my area). I struggle and try to provide my own therapies at home to compensate (psychological, OT and PT) but I have no education nor experience in health or medicine. I am internet trained, observant and creative so I try to make it work on top of working and caring for my whole family. I am applying for state insurance for my son, which I heard has better coverage but I may make too much to qualify - even though I am the only working adult in the house and I don't make all that much.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Educate medical providers on how to evaluate and communicate with autistic patients. Address insurance companies that don't understand comorbid diagnosis and deny services coverage for them. Mental health coverage should not be separate from major medical coverage.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Definitely access to services which includes things like transportation, financial ability, and autistic friendly patient -provider communications.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	equitable access to and accessibility of services, insurance coverage, service systems issues, patient provider interactions, health advocates to assist autistic people with doctor/mental heath visits (someone to accompany them physically or virtually to appointments to help them express their issues to health professionals)
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	More services for autistic adults to transition from school and home accommodations to helping them successfully make their own appointments, hold jobs that pay them a living wage, assistance with housing and avenues to help house less autistic people.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Encouraging more people (the right people) to become specialized in this. We have been on waiting list to get my son seen for a year and in the area we just moved were told the wait is Soo long it could take years because the kids that are being seen aren't kids that in a year get to graduate out of therapy they could be in therapy until they age out. There isn't enough places that offer therapy. Also many places don't take insurance why I am not sure. I've also had pediatricians who truly have no idea what to do. I have to tell them what I feel my child need because they are clueless in the matter. At most of all please I beg of you set up a type of schooling system. For example my son will be starting school next year and I have no idea what to do. There isn't enough schools that take children who aren't potty trained, are non verbal, elope, and can get aggressive. I wish there were more at home services and that people were paid more to offer these services or paid more to join this profession.
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Name	Anonymous
Demographic	Autistic individual
Response	Better training & information for care providers, particularly primary care and specialists of common co-occurring conditions; why does my insurance get to deny treatments my doctors prescribe? Mental health professionals also need better education and information to aid in identifying & funneling patients with autism to appropriate, non-harmful treatments that aren’t akin to “think positive hard enough and you won’t be disabled! C’mon! It’s like you’re not even trying!”… Perhaps just MAiD if that sounds too onerous. There are currently no supports or services even available to autistic people. More time with a doctor who has some clinical awareness of the deficits that may come or some training in ascertaining those deficits (communication, interoception, neurological decline/dysregulation) would likely help facilitate medical care more effectively than the current standard (which likely isn’t great for allistic patients either); remove profit motive from healthcare
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Why can I only access disability services if I have -$10,000 in the bank????
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Name	Anonymous
Demographic	Autistic individual
Response	Teach health care providers how to understand and interact with autistic people. Also, require them to provide access to written communication in all contexts. (This is already required to some extent by HIPAA, I think, but health care providers don't know this and apparently the burden is on a patient to understand the rules and then hire a lawyer—otherwise, so far as I can tell, they'll just say "no" and you have no recourse. In any case, the requirement should be explicit, universal, and enforced.) Also, give us some tools to understand the system. Everything in health care is opaque. It's a maze of arbitrary and undocumented rules and misleading (or flatly dishonest) communication with patients. A random recent example—the hospital I go to has an online record request form, but that record request form only applies to *parts* of the hospital. If I request records from other parts of the same hospital they send a letter a couple weeks later saying the records don't exist—not "that part of the hospital doesn't respond to the records request, here's the alternate process", just "the records don't exist". This nonsense is surely frustrating for everyone, but it puts a disproportionate burden on anyone who struggles with social ambiguity and communication.
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Name	Anonymous
Demographic	Autistic individual
Response	There currently really are not any institutional supports available to autistic people. Access to validating care is extremely limited. Insurance is laughable. And it all hinges on getting an expensive formal diagnosis that could mean the end of your agency as an individual. Care and rights go hand in hand. And these decisions should be lead by the autistic community.
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Name	Anonymous
Demographic	Autistic individual
Response	What autism services? There are no autism services. Is this a joke? Pls be funny next time.
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Name	Anonymous
Demographic	Autistic individual
Response	I feel there needs to be more options or help, vocational, educational, etc.., to support autistic adults who are not high support needs and diagnosed after 21 years old. At this time, many autism resources are geared towards younger children, parents of autistic kids or individuals with high support needs, but since individuals can make their whole lives being undiagnosed, they end up with little help understanding themselves as autistic adults with low to moderate support needs and no resources to easily locate that would help them as an adult over 21 years old. An autism diagnosis later in life puts an individual in the place of removing their “mask” and starting to see their traits as autistic which can cause lots of confusion and stress, especially if there’s not any resources geared towards helping them fully understand and accept themselves. Personally, my diagnosis effected how i viewed my career but I quickly was underwhelmed when trying to find resources for understanding my options as an autistic adult as I was “too old and required low support needs”.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Better training for physicians regarding interacting with autistic patients & better training for physicians on common co-occurring disorders with autism in adults (especially GP’s)
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Name	Anonymous
Demographic	Autistic individual
Response	many autistic people are LGBTQ+ and POC, and people within these groups often have a harder time receiving a diagnosis due to the bias among many psychiatric professionals. Autistic people are especially likely to have differences within gender expression and lack of understanding from professionals can be discouraging for people seeking help.
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Name	Anonymous
Demographic	Autistic individual; Researcher; Other
Response	Pricing and insurance coverage are big problems for a lot of people. Girls, PoC, and adults are likely to get overlooked in diagnosis, and if we are diagnosed we are infantilized and not believed when we need accomodations or co-occuring ailments.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Universal health care to cover all medical costs More training to health care providers (doctors, nurses, therapists, etc) More training for educators (birth through college) Work accommodation for autistic adults
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage for Autism and autism related conditions would improve the care autistic people receive. Having service providers educated in the neurodiversity model of the autistic neurotype would improve autistic quality of life and make way for autistic folks to be better able to self advocate. Services aimed at helping autistic adults who have less obvious support needs are currently non-existent in this country and would benefit a lot of us.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	If autism is present in people with ADHD, I’d love if ADHD allowed me special services to prepare for job interviews.
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Name	Anonymous
Demographic	Autistic individual
Response	There are no support services. Most insurances don't even cover neuropsych evaluations, so diagnosis is near impossible for most adults.
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Name	Anonymous
Demographic	Autistic individual
Response	Improving autism services on a large scale, while keeping in mind the unique needs of each person, is like trying to solve a complex puzzle. One big piece is training: we need to get more professionals out there who really understand autism and the extra challenges that can come with it, like anxiety or learning difficulties. If doctors, teachers, and therapists have a better grasp of what autism looks like and how it interacts with other issues, they can offer more effective help. Another piece is about making services easier to get to, like having more centers in different places, and making sure they're welcoming and don't overwhelm the senses. We also shouldn't forget about the power of technology – things like apps or online resources can reach a lot of people and can be tailored to individual needs. Plus, we need to listen to what autistic people and their families say they need, because they're the real experts in their own lives. By putting these pieces together, we can create a bigger, more effective support system that really gets what people with autism need, even if everyone's experience is a bit different.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Making them free and widely available. That’s the biggest hurdle.
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Name	Anonymous
Demographic	Autistic individual
Response	there are multiple large companies in this country that have customer service so bad their reps can't even have a decent conversation with autistic people. it causes endless frustration. it should be part of the Ada that customer service has to be able to communicate with autistic people effectively
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Name	Anonymous
Demographic	Autistic individual
Response	The medical community needs to stop seeing themselves as the autism experts. They aren’t. In fact, most have outdated, rudimentary ideas about what it is. Having to put our faith in some random medical doctor for diagnosis (and spending $1000s to do it) is ridiculous. We need doctors who are certified by some method, and preferably, autistic themselves. Their understanding of women with autism and/or ADHD is especially bad. Actual people with autism are the experts and should have a larger role in formulating tests and treatments. Autism is not a disorder and should not be thought of as such. It is a neurotype.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Adult insurance coverage for occupational therapy, financial aid for community college / adult school classes NOT required for university but NEEDED for personal and academic success. Higher affordability / tax deductions for AAC devices / American Sign Language courses and greater access to specialists (Speech-language pathology, neurology, occupational and physical therapy, etc.) Specific resources allocated for Black, Brown, and Queer Autistic people and their families, as well as bias-sensitivity training for healthcare providers and teachers. More federally-covered options for alternative treatments beyond ABA therapy. Protections against being exploited via underpayment from jobs, stipends for small companies to create ADA-compliant workplaces. Federal housing specifically for low-support needs Autistic adults.
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Name	Anonymous
Demographic	Autistic individual
Response	More financial benefits that are easier to live off of and get, more jobs that are doable and won’t cause burnout or meltdowns and aren’t exploitative, more care and support for autistic adults
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Equitable access to services, insurance coverage, patient portal with electronic communication to access services without needing to always directly interface with someone on the phone
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Name	Anonymous
Demographic	Autistic individual
Response	As a lower support needs autistic person, getting access to more supports in terms of learning how to access accommodations, and housing support as often our job can be put in jeopardy due to sensory aversions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Programs to help autistic adults integrate into society/ find community. Insurance coverage of more therapeutic services.
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