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Question 5 Responses

What Kinds of Services and Supports are Needed to Maximize Quality of Life for People on the Autism Spectrum?

Topics from Responses to Question 5

Acceptance: There needs to be greater acceptance and understanding of autistic individuals and autism by the public, including first responders, teachers, and healthcare workers.

Respondent Response
Jossette Bailey, UNC Chapel Hill See responses for #4. A general focus on services for autistic people and helping parents understand and work on a team with the autistic kid rather than trying to change them or make them conform. More metacognitive/reflective stuff to help the autistic ppl understand ourselves and how we can help and support our own selves.
AutisticallyReal, Actually Autistic Advocate More online options for scheduling appointments. Acknowledging that being friends with, a teacher of, or having a loved one who is Autistic, means that communication will vary day to day. Sometimes even hour by hour. What we seemed to have master yesterday, does not mean that I can do it again today. Normalizing how someone likes to communicate would be fantastic! ""Hi John! I'm Steve! I'd like to set up a meeting for next week, would you prefer I contact you by phone, text or email?"" Acknowledging ablest thinking and behavior by even asking these questions... efficacious and cost-effective?? Really? So... what you're saying is.. ""How do we get rid of the problem the cheapest way possible?"" Health and safety issues exist because Autistic children are much more likely to be abused in the home, or exposed to PTSD inducing therapies such as ABA, that even an adult could not handle. Acceptance and inclusion would most improve quality of life for Autistic people. Acknowledging that behavior is communication, and removing the School to Prison Pipeline.
Raliat M. Bello More awareness on ASD. This will result to better help and support for ASD community.
Laurence Cobbaert , University of New South Wales (Australia) First and foremost, harmful practices such as Applied Behavior Analysis (ABA) need to be exposed for what they are: profitable pseudoscience that leads to increased trauma and suicide in autistic people. The emphasis should be placed on inner wellbeing, not outward behaviors for the sake of compliance towards arbitrary social norms. It is quite sad that the inherent humanity of autistic people needs reminding, in 2021. There should be more acceptance towards the double empathy problem and stimming. The mental health risks of masking should be at the forefront of clinical training.
Sally Smith There needs to be a lot more education of service providers so that they are able to listen to what the individual with autism needs and not assume some standard supports will work for all. For many with autism a key support needed is a reduction in demands placed on them, thus they may need home help, meal support, support raising children. Executive function issues are not well addressed with current services.
Anonymous More willingness for the public to accommodate people with ASD rather than trying to conform them to be ""normal."" Destigmatization. Financial support available to all people with ASD who cannot work. And DEFINITELY: the creation of a specialized, separate law enforcement team to respond to calls involving people with ASD and other mental health conditions. Standard police don't know how to respond to ASD, and autistic people have died/been injured as a result.
Yolanda HollerManagan Education in the community that autistic people are capable of working and being independent with accommodations.
Lisa Nieman, Parent Teaching and promoting acceptance and appreciation of neurodiversity - and diversity in general to all students. This includes training for all teachers - not just special ed teachers. Better classrooms that can accommodate kids with disabilities for effective inclusion. This includes smaller class sizes, modern classroom management techniques that forbid shaming clip charts, and encourage (and provide resources for) collaboration between students, teachers and admins.
Eleanor Wildflower Because of prevailing attitudes around autism, many autistic people grow up thinking that there's something wrong with them and that they need to hide (mask) their autistic traits, rather than seek accommodations. Better awareness and activism around autism would vastly improve the lives of many autistic people, who are at high risk for abuse from caregivers, teachers, and medical personal. For example, applied behavior analysis (ABA) is inherently abusive, yet many parents subject autistic children to it.
Anonymous PUBLIC education about ACCEPTING autistic children and adults as they are. Group homes that were defunded in the 80s to steal the labor of low support need autistics need to be refunded as do partially independent communities for adults with autism or other NDs. Police should not be allowed to interact with autistic individuals period, social workers only. Also please get them to remove puzzle pieces from any govt issued equipment and any license plates nationally that promote ABA charities, they need to be barred from fundraising via license plate. Literally the best thing this country could do is simply ban ABA nationwide and anything promoting it.
Adrienne Better understanding from professionals (teachers, therapists, the general public, etc.) that each of one of these people are smart. Presumed competence.
Anonymous Above all else, we must find a way to combat the pervasive attitude among teachers that as long as children with ASD get high test scores, they can't be disadvangated and therefore their needs must be ingored.

Accessibility: Services need to be more available, accessible, and affordable, especially for those living in lower-resource settings.

Respondent Response
Zahida Chebchoub service access and utilization
Renee Mandell, mother This goes back to cost. Diagnosis needs to be free. All interventions should be covered by insurance.
Parent Options for services should be lifelong as needed and not based on family income. They should be public and not private based. There are so many children on the spectrum now it should be part of school curriculum.
Stephanie Bridge, Parent Respite is a massive need as is assisted care, thus greater access to waivers. Our son was denied access to one waiver that could have given him these things because we are unwilling to put him into a home.
Marie Cullom Access is huge! Qualifications for regional services, respite care for families, support for siblings of ASD children, activities and therapies. There should be equal access for ALL!
Stephen H Bradford My son, now an adult, qualifies for SSI but not for SSDI. His IQ is 70 and it must be below 70 to qualify for mental retardation. IQ is not the only metric that would limit his employ-ability. The ability to stay on task, to follow more complex rules and instructions, are the requirements of gainful employment. We had a job with a job coach and it was a dismal failure. My son is on the cusp of higher functioning but still unable to perform useful work. He requires mediation that makes his balance and coordination limited. I think that the SSDI criteria should be modified to specifically include autism and some of the conditions and symptoms and behaviors presented by autistic people should be included in any application for SSDI.
Chiara Jaffe, Parent of a 14-year-old with Down Syndrome & Autism The autism waiver provides a wide range of home and community-based services for individuals with severe autism through age 21. However, wait lists are years long. (In Maryland, the wait is 8 years). Many people age out of services while still on the wait list, which is completely unacceptable. Funding for home and community-based services must be prioritized at the federal level to eliminate or at least significantly decrease wait lists at the state level.
Lisa Schott, parent and caregiver Where do I start with this question? There are SO many gaps starting with UNAFFORDABLE health care, finding physicians and dentists who will treat people with IDD, LONG wait lists for Medicaid waiver programs (my son has been waiting 15 yrs); poor quality caregiving and vocational services or lack of good choices, underemployment, poor quality residential programs. Resources don't share with each other and social workers have no clue. HCS providers can't advertise so parents are left with looking at lists on a state website and hoping to find something adequate after many calls. Community supports for vocational training, transportation and housing are lacking in more rural areas.
Maryse Hile, Parent of adult child with ASD who receives services As children age and community integration becomes key, recruiting more DSPs, respite workers, behavioral therapists etc. is paramount. There are simply never enough. Having lived in two different states on either coast with an adult child with ASD, I can attest that the problem spans the country. A successful approach to each item in the question above, from service access and family well-being to health and intervention in community settings, is directly dependent on how many of the above workers can be deployed as facilitators between autistic adults and the complex environment that must learn to navigate.
Julie Francois There are many gaps in equity here. Finding resources is nearly impossible and when we do find them we either don't qualify due to some financial or other exclusion or there is nothing left to get from the service (they are too overwhelmed and cannot help additional families). We need MORE. With Covid, we were unable to find any respite services and have not been away from our children for any amount of time. This has put an immeasurable strain on our marriage that may not last at this point.
Heidi Parr, Case Manager, Seven Counties Services Most important: Gap in insurance-covered therapy services Need easier way to access therapy services - wait lists for autism diagnosis testing is unbelievably long There needs to be an autism waiver that take effect at diagnosis - covering therapies (OT, ST, behavior), nutrition services, respite services for caregiver relief, improved educational path for individuals with autism
Suzi Hiatt, parent & service provider Capriccio Elite, LLC It is important to provide inclusive approaches to services and supports; providing the finding needed to support the individual as well as model for and train the parent and siblings. Funding sources should be enough to hire and train quality staff. If services require bachelor level support, the funding should cover the cost of that support.
Carol Tatom, Autism Response Team Policy issues are creating a huge gap in ASD services for low income and at-risk families. ABA therapy is currently the gold standard in autism services for families who need assistance with challenging behaviors, socialization, self-care, and communication. Medicaid does not currently cover these medically necessary services. Families that understand early intervention and treatment are not able to acquire services after receiving an autism diagnosis. Risk factors are negatively impacted and it creates higher cases of mental health disorders, higher rates of family violence, and limits social mobility within communities. Even with all of the newer research being done, if families are not able to access services, it does not benefit our communities. ABA therapy services are the most important services that families can utilize to help with family dynamics, education, mental health, safety, executive functioning, socio-emotional functioning, and quality of life. Many families are not able to obtain ABA therapy services because their private insurance company excludes ABA services or because they have Medicaid which doesn't pay for ABA. When a child is diagnosed with autism, their disability qualifies them for Medicaid insurance. However, ABA is not covered by Medicaid - very ironic. Parents rely on ABA services to get personalized and individualized help in the help, in the schools, and in the community. Legislation needs to be amended to allow families the opportunity to utilize ABA therapy services for their children with a medical diagnosis of autism.
Deborah Service access
Tonja Nolan, independent service access and utilization (if i were not advocating for my son he would not have his own apartment, would not have SSI, would not have a team supporting him,, because the system of obtaining these services is far too confusing and unclear for him to manage on his own. service systems as well - as an employee for a county government i see the disabled too often turned away from services (the invisible minority) designed to help those with barriers gain employment.
Sonya Emerick I have an autistic child who is very disabled. In my state, he qualified for a Medicaid DD waiver at age four. However, finding staff is extremely difficult. I really believe that investing in the infrastructure of PCA/DSP/Home Health Care work is a top priority, and then making sure families, caregiver, and disabled individuals have access to funding for these programs. Competitive wages and healthcare benefits are needed for care workers. I dream of a world where supporting my child is a coveted job.
Dani Sellmer Services and interventions are the hardest thing to find for family members. This is for a number of reasons. Most often they are just not available. Being able to afford it is difficult for almost all families. Often lower income families are given help leaving middle class families unable to afford it. A diagnosis test for ASD runs from $4000-$8000. Most working class families cannot afford it. Some services are denied to children with ASD because they are not ""autistic enough"". ASD scores and the consensus that certain children don't need services leaves a lot of families without help. I don't know how many times we were denied services that would have been very beneficial because our child did not qualify because he was not autistic enough. This can leave children without the necessary interventions which puts them and their family members in harms way. Much needed education programs are out of reach for almost all families. No family should have to work 3-4 jobs in order to give their child the education that they need or deserve. This puts a lot of ASD people at a disadvantage simply because their family couldn't afford education for them.
Anonymous Fist we need enough qualified providers who are trained and/or eligible to evaluate and diagnose ASD. Kids are floundering on never ending wait lists for 18-36 months. Meanwhile the families / schools are unable to access funds needed for early intervention and necessary tools. In many cases they are being denied an education and sent home because the school lacks supplemental staff to assist with learning and monitor ASD behaviors. They can't begin ABA services and families are under huge stress trying to manage daily responsibilities. Often they go from a 2 earner household to a single earner because the child doesn't tolerate outside caregivers etc...
Lori, Guardian and speech therapist Services should be accessible regardless of income or location. There are great disparities in the education of children and adults on the autism spectrum. Parents also lack support outside of the school systems.
Anonymous Government programs need to support access to ABA therapy--it is probably the single biggest factor that can cause outcomes inequity among racial and socioeconomic groups of people with autism. As well, there needs to be more behavioral interventionists that can assist with problematic behaviors such as aggression, as well as parent management training.
Michael Waterman Many people with ASD don't have access to childcare.
Anonymous Universal Healthcare The removal of the limit on how much you can make while receiving disability payments.
Alyssa Stone, Dynamic Lynks Music Therapy is a proven, evidence-based practice for treating ASD and supporting goals of autistic people. It is a therapeutic service that needs to be more accessible to families and used in schools, group homes, hospitals, and any location where autistic people seek support. There needs to be insurance and government funding for music therapy programs to support social and communication development for autistic people as well as to promote independence, autonomy, and overall mental health. Music therapy has been proven both quantitatively and qualitatively to support these areas of need.
Anonymous I would like this strategic plan to really address access to services for parents and children. Every care provider in my area is overwhelmed with patients and the wait lists are months and months long. Families and children are waiting too long for therapy and losing valuable intervention time. These services also need to be more affordable. Insurances don't cover everything and it leaves a very expensive burden on the parents.
Breanna Geary Services are the biggest issue for most families. People with Autism often requires rigorous therapy, assistive devices, sensory equipment, safety devices, 24 hour caregivers, etc. Families who make too much for disability are generally who fall short of getting the services that their loved one needs. Therapy alone, could easily bankrupt someone. Private insurance doesn't cover all of it. They make just enough not to qualify for assistance, but not enough to give their loved one everything they need for them to thrive, be safe, and have quality of life. Waiver programs have such long waiting lists that families who should qualify have to wait in line for years to get into the program, to provide supports that NEED to be in place.
Anonymous Community education is sorely needed - investigating how therapists, teachers, and the general public can be better informed would be beneficial for the Autistic community. Health and safety issues in children is an important topic. Access to services given the high demand for therapists is a huge issue in Australia right now, with many professionals closing off their waiting lists. How can we address this issue?
Anonymous Universal basic income given by secular government as minimum starting point. For life.
Anonymous Access to genetic professionals, testing and available clinical trials.
Anonymous All, but in particular service access, systems, education of behavioral health providers who only know ASD to be ID or public meltdowns, help for families with wanderers, help with shaming from behavioral health providers when symptoms are unmanageable by one person or the family, availability of community interventions, providers understanding ASD is 24/7 and high functioning is not IQ based. High functioning is whether the family is surviving ASD. My family member is caught between SMI , developmental disability qualifications, and substance use with a perseverative interest. He has a foot in all camps but also can be disqualified from all camps with exclusionary insurance rules. We are a nightmare case for Medicaid providers and we are living a nightmare having to handle everything ourselves because no options addressing the complicating co-occurring mental health disorders that so frequently ride along with ASD are available. My state is AZ and I’ve been fighting an insurance company with a legal department for years and years. I would say the ability to deny access to care based on one size fits all or no category fits him is ruining our lives. Sometimes jail is our only option. Our county jail is proactive on this and tries to get care for people when behavioral health all too frequently fails. Still no options exist that address his needs. The medicaid insurance company has no competition in rural areas so it has all the power. They’re not going to change unless they’re forced. I hope and pray an ASD child will be delivered to their family so they can finally see the tragedies they’re causing.
Breanna Kelly, Benchmark Human Services There currently are significant gaps in trained professionals to support autistic individuals. Medical professionals receive little to no training in this area. However, these providers are responsible for caring for this population. Clinicians are not equipped to serve this population. There is a significant amount of funding being allocated to reactive and crisis intervention and not enough in preventative supports. One of the largest areas I have seen is lack of awareness, training, and support to care for individuals with co-occurring mental health and developmental needs. These individuals are often funneled through psychiatric systems or more restrictive systems. Individuals with these complex needs have minimal opportunities to succeed due to a ill prepared workforce and systems that aren't equipped to support their needs. A better prepared workforce would be foundationally to maximizing the quality of life for autistic individuals. This includes medical professionals, clinicians, and other allied health professionals. There is a dire shortage of qualified direct care staff due to low compensation. Every state should offer wrap around supports to individuals and their caregivers. Access to services is a large barrier to some individuals success.
Diana Autin/Lauren Agoratus, SPAN Parent Advocacy Network/Family Voices NJ Autism needs to be seen as a lifespan issue. There is direct correlation between the timing of intervention initiation and developmental outcomes of children – the earlier the intervention is initiated, the better the outcomes. It is well known that the earliest intervention is key to best outcomes because the most dramatic physical, motor, cognitive, communicative, and social and emotional growth occurs in early childhood. Delays or misdiagnosis complicate outcomes. Lack of pediatric providers hinders progress. Many child developmental centers have an average of 6-9 month wait lists for developmental evaluation after screening, which defeats the purpose of early intervention. For Medicaid eligible children, network adequacy is an issue. Care coordination and/or parent to parent support can help with follow through with recommendations and earlier access to ASD-related services. Funds should be allocated to organizations demonstrating success in providing effective support to diverse parents of young children to assist in maximizing quality of life for them and their children, as well as for organizations led by adults with autism to provide critical peer supports.
Michelle Cheney In my home state of Oregon, autism does not exist. There are no autism-specific service providers in family-based services. There are no autism-specific classrooms. There is no autism-specific distinction in the Oregon Needs Assessment which calculates the amount of service hours my son will receive per month. There are no autism-specific vocational rehabilitation services to assist my son in becoming and staying employed, yet he is expected to engage in competitive employment with neuro-typical employers and employees who are uneducated about autism. Autism-appropriate services are absent and the science is not being used to further the lives of autists at any age in any setting because what is known about autism is not utilized to distinguish, educate, innovate, and multiply opportunities for autists in ways that are meaningful for them and their families. The most important priority for autists is to end the ableist proclivity toward neuro-typical models and begin reinterpreting all systems and service sectors for autism accessibility. In my home state of Oregon, autism does not exist. There are no autism-specific service providers in family-based services. There are no autism-specific classrooms. There is no autism-specific distinction in the Oregon Needs Assessment which calculates the amount of service hours my son will receive per month. There are no autism-specific vocational rehabilitation services to assist my son in becoming and staying employed, yet he is expected to engage in competitive employment with neuro-typical employers and employees who are uneducated about autism. Science is not being used to further the lives of autists at any age in any setting because what is known about autism is not utilized to distinguish, educate, innovate, and multiply opportunities for autists in ways that are meaningful for them and their families. This begins with the fallacy that early detection, early diagnosis, and services will lead to dynamic skill sets that springboard autists into a neuro-typical world with stunning success. Nothing about this fantasy bears out statistically.
Jackie Allen Access to Medicaid waivers to support families in home or other settings. Waiting lists are too long. Families live in crisis for years waiting on help.
Amber Allen see #4 as well as supplemental question 2
Daysi Jimenez Reducir las listas de espera para servicios mencionados en la pegunta 4 Mas personal bilingue que pueda trabajar mejor con los padres Servicio de traducion para poder eliminar la limitacion a recursos y terapias Cortas esperas de los programas del govierno como CLTS para que todas las familias tengan aceso a lo que necesiten para sus hijos Translation: Reduce waiting lists for services mentioned in question 4. More bilingual staff who can better work with parents. Translation service to eliminate the limitation on resources and therapies. Short waits for government programs such as CLTS so that all families have access to what they need for their children

Adults: Services for adolescents and adults are needed to improve quality of life.

Respondent Response
Anonymous Need to look at long term outcomes and better prepare for adulthood. Resources and training for adulthood services-minimizing abuse factors and increasing quality of life. High rate of death from drowning and elopement for autism need greater research and family awareness. Lastly, family training and well being is of significance importance as these families experience high levels of stress compared to others. If they are provided with comprehensive and effective parent training other services could fade and family may be more successful without high level supports.
Danielle Witt As my son gets older I worry about vocational programs and access to that for him, especially with a waiver wait list of ten years. We are a military family and if we move we have to go to the end of the waiver list in that new place it’s so disappointing and concerning. Also the way social security is set up if my son gets that he can barely work or his social security will be cut. Quite honestly I’m afraid for him to become an adult.
Cyndi Stephenson Services for ADULTS. My son qualifies for state health coverage and speech therapy until he turns 18. Because autism isn't considered a ""disability"" he will lose everything including mental health support, medication coverage, and therapy. He is 16 now and I don't see how he'll ever work, but according to SSDI his condition isn't disabling. So he will need support... which is not an option because he is not ""developmentally delayed"". Autism alone is not considered disabling. Even though it clearly IS for some of us. What we could use are job placements that aren't low pay and designed to benefit companies through grants like we have seen in Memphis, TN. These programs are to train DD people to do basic and very low-paying jobs. Adults need REAL training and support!
Parent of Autistic Adult Services and supports that evolve, meeting individual needs from adolescence to old age. Services and supports should not stop abruptly, based upon an arbitrary age.
Eileen Nicole Simon, Lifespan care is needed for people afflicted with ongoing non-verbal autism. This care should continue to focus on improving language skills. Listening for syllable boundaries, word meanings, and ways to increase vocabulary must be the focus. Learning to communicate by deaf sign language can be helpful, and necessary, especially if injury to the language circuits of the brain is severe enough to impair function in Wernicke's speech understanding area of the temporal lobes, or Broca's language production area of the frontal lobes. Parents cannot be expected to provide lifespan care into their elder years.
Leona Schlesna What will happen to my Grandson who is 13 when I can no longer care for him? Will he be subjected to care by some abusive or neglectful person? It's weighs heavily on my mind, every minute of every day. WHO WILL CARE FOR MY CHILD???
Trisha Gallagher, Public Special School Principal Transition to adulthood and building independence.
Anonymous Identifying services and supports is a huge priority, especially for autistics who are not very young children and have very few support options.
Hana Gabrielle, Wells Fargo Managing sensory overload without electroshocking them for the love of god. Talking about sex and puberty with autistic people.
margaret bennett service access and education after age 22 years
Anonymous I think these are extremely important. However, I would say that one of the topics, health and safety issues affecting children, needs to be expanded beyond childhood. In addition, caregiving and family well-being is there, but what about the quality of life for the person themselves?
Christina Gleason Autism isn't something you grow out of. Look at the gaps in the system once a kid turns 18 and no longer has any available supports. Look into supports for those of us deemed by others to be ""high-functioning"" just because we don't have an intellectual disability, because there are no supports available to us. Functioning labels should also be discarded, as they are another false dichotomy. Function is fluid over time, both in the short term and the long term. Without my husband acting as my caregiver, I am not a ""functioning adult"" as far as capitalism is concerned. Executive dysfunction leaves many of us unable to handle household finances, fill out paperwork AND get it submitted on time, or even use the telephone for voice calls - all of which have negative impacts on our lives and our ability to stay housed, fed, clothed, etc. And conservatorship is an abusive legal practice that should be replaced by universally-provided or at least insurance-covered assistance with ADLs without losing our rights to make our own decisions.
Shannon Borg, autistic parent to autistic children The biggest gap is that there is nothing for adults with autism. Everything is centered around children and early intervention. There is very little to help adults who have been undiagnosed, misdiagnosed or late diagnosed. Doctors say well you made it this far so you are fine. WE ARE NOT FINE! Life span of an adult autistic is 50 ish years. The quality of life for adult autistics is miserable and more information needs to be done to find out what supports are needed.
Alexis Oliver Williams Gaps in services for adults
Sandra Lee, Autistic adult Autistic children do not stop being autistic when they turn 18. More awareness of the existence of autistic adults is needed everywhere, particularly in higher education (where many autistic students struggle and drop out due to a lack of support/accommodations) and in job placements, workplaces, etc. Nonspeaking autistics, especially, are being ignored and pushed aside when they have so much to offer the world.
Bix Frankonis, Actually Autistic There is something of a “missing middle” in quality of life discussion and research. Setting aside the obvious focus on children, research and discussion of actually-autistic adults frequently seems to focus on so-called “high-functioning” and “low-functioning” autistics (although I prefer language based upon support needs)—leaving out those of us I’ve called, because of our relative invisibility, the “mediocre autistic”. To wit: the autistic adult who is more-or-less fully capable of independent living but incapable of being economically useful and therefore is not financially self-sufficient. (Some of us, as I’ve put it, are neither savant polymaths nor high support needs.) Quality of life is negatively impacted for these autistics by virtue of the nation’s difficult disability system which resists distinguishing between the types of personal physical and psychological resources available to any particular autistic (or otherwise disabled) person. Such physical and psychological resources are not necessarily, and certainly not inherently, interchangeable. Due to the character limit, please see for the rest of this comment.
Beth Mortl Health and safety issues are top priority for our kids. I work as an Intake Coordinator for a multi service provider. I also have a 25 yrs old w ASD. We need more adult transitional living programs. Not group homes and not living with mom and dad. adults have a right to live on their own w supports that keep them healthy and safe.
Julie Grant Building independence and Life beyond 21.

Caregivers: Services are needed to support parents and caregivers and to ensure the quality of care for children and adults on the autism spectrum in home and community-based settings.

Respondent Response
Anonymous There is always a shortage of caregiving services, this is very important for the function of the entire family
Freda Dias Caregiving and family well-being... which is often best accomplished by providing timely services to individuals with autism (after school care and activities, day programs for adults, respite care)
Sarah Knauer, Music Therapist providing services for students with ASD An often overlooked area of need is parent education and support at home. Many parents, especially those from socio-economically disadvantaged backgrounds, may not know the services that are available to them, and may not have the time or resources to advocate for the support they need to be successful.
Sharon Montgomery, U.S. citizen Caregiving and family well being, efficacious and cost-effective service delivery, and interventions in community settings. I'm a sibling of a person with autism. She is cared for by my 79 year old mother and father. They need help urgently. I have read every single article I could find over twenty years on adult children with disabilities of senior parents. There aren't a lot. There aren't many on siblings either. Every single one describes the THOUSANDS of names on waiting lists. There is a dearth of activities and support, many of which could help seniors too. These parents did the right thing by caregiving for many decades, advocating for their kids, devoting thousands of extra hours toward their education and health. They need help themselves now.
Alexandra Hernandez Caregiving for ASD children is very difficult to find. We need head start programs and federally funded home attendants that can assist with caring for ASD kids especially for working parents.
Annette Raia, Parent Caregiver assistance support for those who are severely affected by autism
Anonymous All very important from different perspectives, let’s start by caregiving and end with service systems, because we can’t hold off on caring for our loved ones while the system is assessed and fixed
Tom Rickels, X-Excel (day services provider) Caregiver and family well being. That just makes sense to look out for their needs.
Anonymous Caregiver well being and training - support
Jan Carpenter, parent of two handicapped children 1) THERE IS A CAREGIVER CRISIS IN THE US: Pay all caregivers at least $15 per hour and give them health benefits. 90% of disabled people will be abused at some point in their lives partially because of the quality and quantity of qualified caregivers. Another reason is stressed parents with no help or support which can lead to suicide and murder/suicide. Sadly, most parents of high needs children will admit that they have contemplated it at some point in their journey. Respite help for parents 2) More respite and recreational community options that are geared for this population. Again, give incentives to communities to start these programs.
Lucas Kunach, Fraser Please add as focus areas: -- Parent and caregiver training -- Parent and caregiver health and wellness
karen barrett, barrett consulting family therapy and sibling(s) therapy, and parents therapy
Anonymous One of the biggest problems in the autistic community is that parents and guardians have no one to be accountable to in their decisions for their children and wards. If they are lucky, these autistics will receive the proper diagnosis and treatment. If they are not, they won't. Even parents and guardians who love their children and wards may not understand (or be in denial) about the disability and thus may not seek out or agree to proper treatment. This is especially problematic for those autistics with co-morbid conditions (like Major Depression, ADHD, and OCD) whose parents/guardians refuse appropriate medication and/or psychotherapy. (There are many who still hold ignorant and prejudiced views about mental illness.) The state MUST hold these parents/ guardians responsible for the proper treatment for these children/wards. I should know. I am one of these wards, a mentally ill autistic. My parents (including my guardian father) have neglected my mental health needs and led to needless suffering for almost 20 years!
Lynea Laws, Ph.D., Zeta Phi Beta Sorority, Incorporated Furthermore, parenting skills training is a significant need in general, but especially for communities of color. Oftentimes, communities of color are unaware of the questions to ask and steps to take to advocate on the behalf of their child. This should be taught so parents, educators, and providers can work more collaboratively. More curricula like Parenting Skills Training by World Health Organization Caregiver Skills Training is a culturally adaptable training program to foster the social and communication skills of children with autism. It is a family-centered wraparound service, designed to be delivered by non-specialists as part of a network of health and social services for children and families. Training is focused on the caregiver being able to use everyday play, home activities, and routines as opportunities for learning and development; addressing communication, education, daily living skills, challenging behavior and caregiver coping strategies.
Autism Science Foundation The IACC Strategic Plan should reflect that an important way to maximize the quality of life for people with ASD is to provide ongoing support and information to their parents and siblings. ASF has funded several initiatives that seek to help families understand the heritability of ASD, as well providing ongoing support for siblings of people with ASD. • Next-Gen Sibs research. This project which began in 2021, seeks to create a network to identify, diagnose and treat ASD in the Next Generation: the children of typically developing siblings of people with ASD. These adult siblings, who may be starting their own families, want to understand the reasons for and the extent to which there is a higher rate of diagnoses in their own children. • Sibling Webinars. In 2021, ASF and the Els for Autism Foundation collaborated to create a series of webinars, “Sam’s Sibs Stick Together,” the goal of which is to aid research involving siblings and provide them with ongoing mental health support and connection with others facing similar challenges. Siblings of individuals with ASD will benefit from support throughout their lives as their responsibilities and family dynamics change. • Autism Navigator. The Autism Navigator provides courses, webinars and virtual community support for families, educators, and healthcare providers. Users can interact directly with one another, allowing users to exchange ideas, receive support and gain access to experts.

Community: Additional services and supports are needed for community integration, including community-based services and supports, transportation services and supports, and accessibility of infrastructure and the physical environment, to promote independent living of autistic individuals.

Respondent Response
Kaitlynn Lyra Smith, Unaffiliated Autistic Adult I believe this should be the primary goal of autism research. Improving community integration and accessibility would be a great first step to improving the quality of life for autistic individuals throughout the lifespan.
Anonymous Independent living assistance, better healthcare with more understanding providers
Michele, Parent, school employee There is support for job training, but transportation costs to get to a job are not included. Many, many productive people on the spectrum, but if they don’t drive or live near public transportation, getting to a job is next to impossible unless you spend 100% of your earnings.
Jane Kontoff Implementations and services supports within the greater community to further more participation by ASD adults.
Anonymous More community education especially on communication and approach
Anonymous We need more in-home services that are NOT behaviorist based!!! We need practitioners with an understanding of Pathological Demand Avoidance. We need practitioners trained in collaborative problem solving, low-demand approaches and trauma-informed practices.
Brandi Timmons Social skills training and activities of daily living training should be available to families as soon as a child is suspected of having autism. Social skills training and daily living skills training should be covered by insurance for all ages.
Anonymous In terms of supports people with Autism May need extra help with activities of daily living. They could use supports such as private transportation due to the anxiety related to public transit settings. People with autism could benefit from supports like headphones to reduce traumatic noises and stressors and weighted blankets to help with sleep.
Catherine Pinto, Parent Home and Community Based services should support ALL choices. Currently people who choose to live on a working farm can NOT receive HCBS supports. This is wrong. My son wants to live and work on a farm with supports and his choice has been denied. Support ALL choice.
Anonymous Services must prioritize community inclusion of autistic people. For this to be done successfully, we need a dramatic increase in funding for Home- and Community-Based Services via Medicaid.
Josh Compton Communication is critical. It is a fundamental right. Every voice must be heard, including voices that do not use reliable speech. We need more public knowledge and acceptance of augmentative and alternative communication (AAC), and aac options should be provided from the earliest years to best benefit children and adults with autism. We also need much more attention to safety issues, including the dangers of elopement and water safety. Partnerships with police/fire and other community organizations should be strengthened to keep autistic children and adults safe.
Amy Mason, Islands of Brilliance The most important quality of life services need to produce feelings of belonging and community for autistic people. Any programming for a person with autism needs to include this component for maximum benefit as well as return on investment. When programs for autistic individuals focus on these important outcomes of belonging and community, they can help their participants create changes in areas of their lives that are meaningful to them regarding independence, work, and education.
Parent Focus on Home and Community Based Services.
Denise Wildrick, Autistic Adult and Parent Housekeeping, meal preparation and assistance with the ADL. Wages to the people providing services that makes them want to do their job and not abuse their charge.
Anonymous Services in community settings, service access, service systems, education
Anna R Myers Given more space and time to do things and complete tasks, given areas to decompress after being overstimulated, having people understand and respect our differences, police training on how to handle/help autistic people, more space to stim publicly, removal of strict dress code that makes it so people with texture issues cannot go certain places or get certain jobs.
Korri Ward, parent, science teacher, local advocate The most important services and supports are needed in the implementation of interventions in community settings. Children with autism need to be in clubs, social groups and community based activities. Boys and Girls Club is big in Elko, but they deny access to children with autism or any significant disability. Adults with autism need access to Home and Community based services from staff trained specifically to work with individuals with autism. The supportive living assistants in Nevada do not have autism specific training nor are they provided training specific to an individual. After general first aide, CPR and background check they are sent to the house to work.
Jillian Nelson, Autism Society of Minnesota I would urge the IACC to look at expanding the national conversation about accessibility. The conversation about accessibility is a staple in the disability narrative l- but with that far too much of the conversation has focused on accessibility modifications to public spaces to assist individuals with physical needs, such as parking, ramps and bathrooms, and while we celebrate this progress and rejoice in the reduction of barriers- these changes do not increase accessibility for a large portion of the disability community including those with ASD. Although the ADA idealistically supports these types of accommodations, the reality for our community is that the burden of receiving accommodations is not a path easily navigated, often the burden of accommodation falls on the individual or family to provide, or requesting it formally becomes an emotionally charged battle. The lack of accessibility is often seen as an inclusion problem when it faces invisible disabilities rather than a violation of accessibility laws because there are no clear standards. We have been working towards passing a package of bills that outlines access needs in several areas including events, county services, public space, the IEP process, the legal system, and crisis housing. We believe strengthening expectations and establishing precedence can change the landscape of accessibility and create a more welcoming and ASD friendly community to allow for greater life outcomes.

Education: Services in educational settings are needed for autistic students to access and obtain high quality education and learning opportunities.

Respondent Response
Guohua Li, Columbia University IEP (individualized education program) specially designed for children, adolescents and young adults with ASD should be made available from pre-k to college.
Kathleen Education. Few autistic people have any positive experiences in school settings and school haven't idea how to make school or harmful.
Danielle Draut Close support when they are younger in the schools. My son benefited from an aid at first then transitioned quickly out of it. They had speech and OT early and for a long time, they transitioned from sensory and behavior to more executive functional skills as they got older: organization, problem solving etc.. There needs to be more services for those entering into college and those exiting to help find the best employment that fits their needs. I think young adults need support groups, it seems to drop off once they hit high school. Again parents need to not isolate their kids or let them just be alone, the more social interaction the better, it gets eaiser and the kids or young adults try new things on their own.
Emily, Mother of an autistic 4 year old. Autism based schools starting pre k to high school. More comfort being around other autistic children and more focus on therapies. Cant stress this enough.also parents need early education of autism too. They need tools to fully understand what there child is going through. Some parents dont want to accept it but they need to. It will help their childs progression.
Cindy Gutschke Public education in schools specifically designed for Neuro a typical children. Integration into public schools may be the answer for those with high functioning children. Non verbal children are put at risk in public schools with other students as well as teachers. Those who are not trained in dealing with autistic children have no business attempting to educate them. The teacher to student ratio is too high. In south Texas the only option is Applied Behavioral Anaysis. Every single one is for profit besides the few community clinics that have extremely long wait periods and are just temporary as the therapy provided is only long enough to train the parents to do ABA.
Angel Holladay YES!! This is very important to us. How the education system deals with autistic children is important!!
Anonymous Service and access utilization in some school districts/areas needs improvement. For instance I have witnessed children with ASD be denied important, helpful therapies and unfortunately children get so lost trying to keep up in class that they have had to leave the public school system to be homeschooled to get the attention required to learn and not fall through the cracks just getting pushed through the school system.
Anita Thomson Since autism is diagnosed more and more frequently, it seems that teachers need to learn how to teach the AS child in the community of diverse learners in a classroom. An openness to the dumb questions would be good.
Nicole Shelton, AdvocacySD In order to maximize the effectiveness of this question, you need to put more money into the school system. While the first lady may be touting how we need to have more coming out of our educational system, the federal government needs to get in more than 13% for each school district budget in the area of special needs. Again, this isn’t just about kids with autism
Anonymous Financial support to attend a college program
Peter Mazure, Parent; Chesterfield CSB Fund/provide grants to support better programs for teaching safety skills to children and adults with autism. Safety skills should be a required part of any education curriculum.
Janay There seems to be a growing number of services, devices etc for that are lower on the spectrum, however, those that are higher functioning services, devices, etc are very limit or almost non-existent. I will reiterate that we need schools to work for all children. It is part of our guaranteed rights as a US citizen. Instead the families are either left with no support or to often pay out of pocket for specialized schools. With all the different types of schools we have, we need ones that teach the way ASD individuals best learn.
Anonymous We need more schools that have all the services they need like OT, Speech, PT, Feeding, ABA, a Behavioral Specialist, Psychologist, and any other specialty that they will benefit from while in school and at home. We need professional that care and will not abuse them in every setting and community.
Pamela Foster The biggest gap is schooling that integrates individuals with ASD with typically developing peers. Being around their peers is the best role modeling and yet options are extremely limited. This is a tragedy. Affected children need support and to be integrated and this is not happening. Teachers need support to help these students learn in alternative ways.
Katie Vahey Gaebler, Parent and ASD consultant Please focus on education and services, esp getting the youngest children diagnosed and served earlier. Public school supports. When my son was determined eligible for a dedicated ASD lab program in our public school district, it was a game changer. Having the dedicated supports to have his best school days is critical to functioning as a family. Having a dedicated para-teacher who knows my son's interests and abilities helps him get thru every school day, and makes his time not in school even better.
Anonymous Elimination of restraint and isolation. More specialized education for caregivers and teachers, especially early childhood educators. Helping teachers create inclusive classrooms for all children, instead of relying on behaviorism strategies that tend to shame already anxious children, like behavior charts. Reducing visual clutter in the classroom, unnecessary external noise, bright florescent lights, and learning strategies to connect and engage with all different neurotypes so teachers can lead with connection instead of correction.
Gary Ames, I am making a proposal next week to the Philadelphia Behavioral health payer to offer Neurofeedback in schools. There one technician can train 3 ASD students at a time with a cost of completion about $2000 each. Costs are lowered with volume. A few sessions a day are possible. Radical improvements can be made within a couple of months.
Anonymous The education sector should receive more training on the neurodiversity paradigm and autism acceptance. Implementing the universal design for learning framework would help ensuring that education is more accessible and that autistic children and young adults require fewer accomodations.
April Morome, Autistic person Colleges and all schools should work with the problems we have. My current college doesn't always do that, nor for my gastric conditions that usually severe, most times. This semester was the exception for me where my instructor actually said okay to working with me for this.
Anonymous Having better accommodations for Autistic people in academic settings is important. I always struggled with school in person and now I'm almost finished with a 4 year bachelor's degree online in only 2 and a half years. Having remote accessibility and other more flexible accommodations are necessary and there are not enough available right now, despite the fact that everything was done remotely and flexibly for over a year and now people are going back to the way it was without enough regard for the benefits that the pandemic provided for Autistic people and disabled people in general.
Mary McTarsney Education and broadened locations
Aishah 5. The American education system needs to do a lot better when it comes to services for disabled children. And understanding that a disability doesn’t have a certain physical appearance on another person. What I mean by this as I am a very attractive well-dressed and articulate person but I struggle tremendously and I have been told by my disability office on multiple occasions that I’m not disabled enough to get customized services. And that’s incredibly hurtful and dehumanizing. I deserve to go to school and be able to have as easy of a time as my newer typical peers deal and for me that means having really customized accommodations. For example I’ve been stuck writing two papers that I just cannot write because I don’t have a text to speech option for my essays or an oral option to present my research to my professors. This isn’t fair because now those papers are late but I know what I’m talking about and I know what I’m doing, so it’s not like I haven’t done the work it’s just the work isn’t accessible.
Jennifer Please do not overlook the importance schools play in providing supports, services, and programs for children and teens with Autism. School districts frequently qualify young children with autism and place in programs they do not have. They greatly impact a child/teens progress or regression. How can this be addressed since schools play such a vital role in development of a child/teen on the spectrum? It’s vital for children and teens to be provided with supports, programs and behavioral support in their public or private school setting. Schools play an important role in progress of a child’s progress or regression. Adequate Services and time of services should be available in schools. This is currently lacking across the U.S.
Aster What could be helpful for autistic children would be if all educators were taught about the needs of autistic and otherwise developmentally disabled children. Specifically, it would be useful if they learned to apply that knowledge regardless of whether a child has been diagnosed with a disorder. In schools, teachers often treat children with the assumption that they are not autistic, and it would be better for the children if they learned to apply techniques used for autistic children whenever it could be relevant, and not just for those with a diagnosis.
Levi Miller One of the biggest areas here is our school system is in need of a massive reform. I want to tell about my experience here. I had a professional medical evaluation about 10 years ago for my communication disorder and sensory disorders and it was determined that I did not meet the strict definitions of the ASD disorders. However, my IEP evaluation put me on the ASD program because of the limited options. My point is our schools need to work closer with the medical field and the advocates so we can better accommodate students no matter what there differences are as we have been failed for years and also eliminate segregated classrooms in schools.

High Support Needs: Additional services specifically tailored for people with high support needs are needed.

Respondent Response
Christina Newendorp We need much more investment in service provision for those with severe autism. These individuals struggle to receive intervention services or missed ABA entirely for the last 10-15 years, because there were no insurance laws or providers in place. They struggled in school and speech and occupational therapy. Now they struggle to qualify for home and community based service waivers; endure waiting lists; then they get off the waiting lists and there are no service providers, or you can't hire staff with available funding. Parents are aging and exhausted and yet they are the only ones caring for individuals with severe autism unless those individuals are wards of the state, which offers a bleak future as well. There are no appropriate in patient options and few housing options other than living with parents. Service systems for this population are not a system--they're fragmented and broken.
Michelle Williams There must be a way to support those with the most severe autism throughout their life. How can they live the life they choose with the quality 24/7 supports they need (and not rely solely on parents to provide them). It seems there are very creative ways to support people in the community, but federal regulations get in the way (considered segregated settings, or income restrictions that could kick someone off Medicaid, etc)
Anonymous Too many families are just surviving in isolation as society does not see or witness the most severe ASD but see only high cognitive functioning savant portraying tv actors, “ie: the Good Doctor” This is not a reality for most & probably more like in the movie “A Few Good Men, with Jack Nicholson on the stand shouting, “You can’t handle to truth” Caregivers & Safety for them is important & community based programs for respite is rare or non-existent for the behaviors & extreme ASD spectrum.
Melissa Drake, Mother of two sons with autism Build places that coordinate with parents and actually help!! Build and invest in hospitals for our severe almost always nonverbal population, build so many RTF’s per state so everyone isn’t living an every day actual war. Caregiver burnout is real because there is no help!
Anonymous I have two sons with severe autism, ages 12 and 9. Our 12 yr old is nonverbal, in diapers, smears his feces and has a history of elopement. I receive Social Security Disability for depression and can’t drive. I fear the day if my older husband dies. I have no family or friends in this state and very little help from their Medicaid waiver. We would become homeless if social services doesn’t help us move. Ideally, I want us to be in assisted living together where I could help take care of them and make sure they aren’t neglected or abused. I dread this terrifying situation every day and night.
Anonymous Funding is required to create schools and organizations for people with severe problematic behaviors. When children are simply suspended or expelled/placed on homebound- there is nothing being done to teach appropriate behaviors. There is also a huge need for group homes for kids with these behaviors as inpatient units do not accept children who are non-verbal. When a parent is unable to keep their child safe there are no supports.
Anonymous We need a priority placed on long-term supported living for severely impacted adults with autism, since their aging caregivers won't always be able to provide care. There needs to be a range of options. While community living is the ideal, there will always be people who need more care and support. Quit closing so-called ""institutional settings"" (in the name of the Olmstead Decision) and instead focus on what supports people need AND what kind of setting they may prefer. Many aging adults will need levels of care that can't be met in scattered community living. Why not allow for intentional communities for people with disabilities? Our loved ones need a range of options, JUST LIKE EVERYBODY ELSE!
Anonymous I believe more supports and services need to be directed towards children with significant autism (classic autism) and behavior issues which impact the child, the family and ultimately the community. Higher needs children need more services. Services for people with more severe autism are desperately needed. There are few if any recreational, housing, or medical systems that meet the needs of this group.

Housing and Employment: More services are needed to provide better housing services and encourage employment of autistic individuals so they can lead independent, fulfilling lives.

Respondent Response
alvaro ryes, angels castle Housing Socialization
Jane Horn My nephew in Massachusetts lives in a “community” group home. As far as I can find out, this home provides little but a bed and three meals a day. There is no discernible benefit to being in the community. He preferred the State Hospital where he had a vocational program, and some contacts with community programs. His quality of life is much poorer where he is now.
Anonymous Employment!, and not only in the context of transition services - we need much greater effort to get adults on the spectrum into the workforce.
self-advocate We need more supportive housing options for autistic adults. There are too many autistic adults living with aging parents who don't have a place to go in the future. We need to transition these individuals into supportive housing before they are in crisis but there are very few options. Here in CT, there is supportive housing for adults with intellectual disability but autistic adults without ASD aren't included in this. We need to prioritize our autistic adults.
Anonymous The most important services and supports needed to maximize quality of life are services systems through funding for job development, job placement, job sustainability. Additionally, education plays a key roll not only for the individual with ASD, but service providers as well as employers and family members.
Tiffany Aguayo, Work Based Learning Coordinator Independence (with appropriate supports) in the Working World and preparation for such via transition services (beginning at age 14) and Work Based Learning Programs and Pre-ETS via DVR (beginning at 16 years of age) through HS graduation.
Jennifer Dapkins MEANINGFUL, purposeful, and gainful Job and skill training. Not collecting garbage, or bagging groceries. Starting at a young age 15. Better oversight on funding, spending and efficiency of these programs. Billing for services not even rendered HOUSING!!!! The poor and disabled are the same they need housing The Autistics Need independent living, not institutionalization!!!! Not awful group homes with people who are not trained.
Bill Raymond, Autism Advocate IACC should advance research in areas which the Portfolio Analysis Report identified as consistently less funded than other areas: Services, which includes evidence-based practices in community settings, received 5% of funding IAAC should endorse programs which advance partnerships between housing developers and host communities to provide affordable housing, job training and employment. The benefits would be to increase the availability of affordable housing, provide income that enables the individual to become independent and self-supporting; advance a skilled and trained workforce which allows employers and the broader community to benefit from the unique skills and abilities of a neurodiverse workforce; and, better integrate the autistic individual with the broader community. IACC policies should advance funding incentives which promotes partnerships between housing developers and host communities to increase the availability of affordable rental housing; provides tuition assistance for vocational training; and, leverages partnerships between housing providers and academic communities to develop programs to develop vocational skills of the neurodiverse population.
Meg P Services include affordable housing and better employment opportunities so people with ASD should live in poverty and fall through the cracks due to workplace issues.
Frank Easton Help us to find jobs, that feeling of hopelessness when we can't find work is so bad for so many adults on the spectrum. That to me is the number 1 priority.

Inclusion: More services should be developed, delivered, and informed by autistic people with lived experiences, and services accessibility need to be improved for autistic girls and women, adults, ethnic and racial minorities, and other underserved groups.

Respondent Response
Yvonne Federowicz Autistics need to be included in every part of the design of these, and adults -- including female adults, adults of Color, late-diagnosed adults. Additionally, the large number of autistics who are having to figure out their autism as adults on their own should not be sidelined by researchers, community service providers, autism nonprofits etc. ""You're not like my autistic nephew"" should not be thrown at such people to discount their lifelong unmet needs in favor of the zero-sum-game thinking process that keeps funding flowing toward ""Earlier and Earlier Treatment"" (with no followup anyhow, but that is another whole issue.)
Kristen Herrett Services are not equitably distributed now. Individuals in rural states are disproportionately unable to access services. Services are also geared towards those considered “high functioning” leaving a not insignificant portion of the population with nothing.
Ronni Blumenthal, Phelan-McDermid Syndrome Foundation Equitable access to services across all communities.
Anonymous Engage autism community themselves in policy making, not neurotypical autism “advocates” and parents who don’t have real perspectives of the autistic people.
carol staszewski Consumer driven and defined supports!!! Flexibility in services so that people on the spectrum have agency and can access what they really need vs. what others determine they need based on outdated and culturally insensitive assumptions. Absolute necessity for autistics to participate in these formulations and conversations. With two graduate degrees, one just short of a PhD, and much advanced training and professional skill, I was taken out of the workforce at age 50 (20 years ago) because I wasn't able to obtain support with executive functioning and sensory processing needs (maintaining home/self-care/etc. and social/logistical trappings of employment...even though my actual 'work' was held in high regard. Again, a fairly common issue especially for adult women as they age and run out of steam for masking and self-accommodating. Not sustainable.
Anonymous Study autistic children raised with autistic caretakers.
Mike Hipple, United States Society of Augmentative Alternative Communication AAC and Wisconsin AAC Network They can tell you what they want/need/feel. Communication is our daily life
Lisa Morgan, Lisa Morgan Consulting LLC Whatever specific autistic people need. It's not going to be a one-size-fits-all kind of solution. Autistic people are all different with individualized strengths and challenges. The services and supports must be individualized to meet the needs of autistic people.
Skylar Listen to autistic adults. We have a much better understanding of what services autistic people need than any medical professional, government official, or family member.
Anonymous The lived experiences of autistic people (diagnosed as adults and as children, and across racial, ethnic, gender, and other categories) should inform services and supports. Ableism and stigma are risk factors that impact diagnosis and lead to a lack of accommodations in daily life (particularly when legally prescribed action is the only widely accepted method to access supports). Services and supports should come from this perspective, rather than one that medicalizes autism and regards it as something to be ""fixed.""

Mental Health: More services and supports are needed to improve the mental health of autistic people.

Respondent Response
Anonymous This is of course going to differ depending from person to person. People need different support for different things. If someone struggles with their finances or paperwork due to executive function differences there should be a service in place to help them with that. If someone requires some level of silence, steps should be taken to prevent unnecessary noises in public and residential spaces. Most importantly, I think mental health services need to be educated on autistic people. So many autistic people struggle through life due to the lack of acceptance and understanding from the rest of the world. Many develop anxiety and depression due the the vast amount of rejection we experience. And often when we finally see a therapist they don't know anything about us. It would be great if we didn't have to be our own autistic advocates when seeking mental health services.
Anonymous Mental health approaches LENA programs for early brain development
Elizabeth Bartmess Effective psychotherapy for ongoing complex trauma and for aftereffects of past complex trauma. Advocates to help us navigate physical and mental healthcare systems. Research on aging. Research on standard psychotherapies (autism-specific and non-autism-specific) that looks into long-term effects, including potential harms of psychotherapies.
Anonymous The mental health is an issue to be considered, not only to a person with ASD. More times than none, the parents need to deal with elevated levels of stress, anxiety, depression, and other mental issues, they too, require help on how to deal with the situation they live.
Anonymous Accessible and decent therapy
Jodi Pliszka, Neurolicity There are not enough resources or mental health providers that specialize in adult, female ASD. We need more funding for more awareness.

Current Priorities Still Relevant: The Objectives as they are stated in the Strategic Plan reflect important current topics and issues in the field.

Respondent Response
Catherine Martell, autistic, health care provider all of the above. put your research money here.
Peggy Wargelin, Parent with 18-year-old child with Asperger's diagnosis These are all desperately important! For our family, help in social skills, job placement, reasonable health insurance once she ages out of ours at 26, supportive social programs, and housing options are/will be helpful. I especially want to mention the health insurance, because she could not get her meds if she was on Mass Health because they would not prescribe any of her current medications.
Jessica Easton OT, Speech, Behavior therapy and access to case workers who are trained in safety measures at school, home and in the community. Respite care is also vital.
Michael In my opinion the most important services research, delivery, and policy priorities and gaps are: service access and utilization, service systems, education, effacious and cost-effective service delivery, health and safety issues, and implementation of interventions in community settings.
Florencia Ardon This is an area of extreme importance that really impacts the wellbeing of autistic people and their families. Access to services, transparency in those services, respite opportunities, education for caregivers, inclusion of autistic people in the community life are crucial.
Anonymous Education, caregiver and family well being and child safety. Communities need to have accessible programs to allow children resources (staff, sensory supports) to benefit from peer and community interactions.
Jill Goldstein ALL!!! again, we are so far behind. There is a caregiver shortage, there are barriers to access services and many appropriate options aren’t economically feasible.
Matthew. Lawrence LeFluer, Vermont. Family. Network/. Special Olympics Vermont Again. All. Of. Above. Accessible and available. To. My. State. Of. Vermont. I. Agree with the. Information. Please. Make. It. Transparency. For. Citizens with disabilities
Mollie This should be the top priorty for autistic focused research. Maximize QOL, instead of minimizing autistic existence.
Sherrie Kinard, Parent of 2 Spectrum Children All of these! Services are only given to more severe spectrum children and the high functioning children are left without service. There should be more services available for the high functioning kiddos on the spectrum since these are the people that will be able to become successful and functioning members of society if they can get the help. Having no services leaves the financial burden on the parents that may not be able to get the help that they need for their child due to financial constraints.
Asa Service access/systems, health and safety issues, interventions in community settings, social activities, respite services
Anonymous I need more services
Marc H Joseph I don't think there's service, school, or basic need available for autism children.
Sarah Longstaff All of the above, but again, the focus should be on validation of differences and accommodations, not ""intervention.""
Julie L Shaughnessy , Parent Any and all help in any state for any and all family members affected by or living with ASD
Shelley All of these yes
Gene Bensinger, Parent and Guardian A wide range of well regulated, adequately funded, consumer choice driven, lifespan (for caregivers, multi-generational) services and supports must be available to meet the equally wide range of individual needs and preferences. Great care should be taken in any system rebalancing and new infrastructure development and design to ensure that many varied models and designs of support remain accessible.
Shyla Patera, North Central Independent LivingServices, Inc. Children and adults need effective assistive technology for living and working through issues.The educational system and the state waiver system do not need to focus on punishing students with behavior issues .There should. be no restraint and Seclusion tactics Ever. Because state waivers and services are often un funded and there are inequities ,IACC should Study systems and outline state and federal best practices Every adult should be afforded choices evolving CompetitiveIntegrated Employment and academic learning if wanted and or desired.

Miscellaneous: Response addresses other topics not listed above.

Respondent Response
Jennifer Degner, Early childhood special education teacher This is the multi million dollar question. As a society we need to choose to invest in this under identified and undeserved population. I see great needs and our current system is broken, under staffed with qualified individuals, complicated, confusing and desperately needs reform. I want 1 point of entry , seamless infrastructure ecosystem developed including ( educational, medical, financial , behavioral, career guidance, service access, safety, etc) that is a database that families and individuals can utilize and register so if they more they are still in system and don’t loose benefits or access to treatments , services. It will take dedicated work but so helpful to families from the start down the line and advantageous to educate, provide accommodations and set up individuals for employment and life long success. Individuals with autism have great skill sets that employers need to be able to best take advantage of. Families are desperate, exhausted and don’t have time or energy to navigate the broken system.
jean publiee natural immunity needs to be studied l00% for every vaccine we have. where are the studies.why are there few to no sutides. we are paying trillions of dollars to these cdc and fda people and no studies have been done to see the resutls of natural immunity instead of pumping people full of vaccines. there are peole who neve get sick and why dont we study natural immunity and hwow to keepit. it is much more valuable than being pumped full of cholesterol, sodium chloride, potassium chloride, ethanol. really? all that chloride?
Michele Lopez, The Guidance center-Early Head Start When families receive a diagnosis, a comprehensive plan should be put into the place. Instead the family is left to navigate the world of general and special education, intervention and possible services for their child!
Kevin, Legal Reform for the Intellectually and Developmentally Disabled (LRIDD) Early intervention through social state services (via school district, MDHHS, other agencies) by providing both physical therapy, rehabilitation, and conditioning in conjunction with social guidance, either by a peer support counselor or professional licensed counselor, are key towards minimizing the impact of Autism in that individuals life. However, for many Autistic adults today who were denied this critical service due to society's/government's lack of knowledge and recognition of Autism, they have little in the way of being able to construct those meaningful social engagements that are built in K-12 schooling, enjoyed exclusively by neurotypical individuals. Thus, the only tool they have are psychological counseling which is only orders and directives for how that person should act and engage in society without providing the appropriate atmosphere for them to gain that experience. This is without harm until they have an intersection with the police if their behavior is deemed inappropriate. The Autistic person is usually only not only harshly criticized and demeaned, but forced to suffer irreparable or serious physical and psychological damage from being ordered to pay thousands of dollars for attorneys/costs and then tossed in jail, making problems even far, far worse for them and the community.
Sherrill DeGenova We must have access to behavioral services. End of story. This includes medication, wholistic interventions that are evidence-based, trained support persons for both asd individuals and their families and medical staff that are trained to assist those with autism. Without these services, no policy or housing or transportation or day programs will matter. No matter what % of time individuals spend at home or in their communities, if they do not have access to behavioral services (as stated above), it won't matter. They will not ever have any quality of life.
Lauren Vogler More services are needed for people who have concurrent diagnoses, such as a behavioral diagnosis along with a medical diagnosis. People in this situation are being told that services don’t exist for them, and it limits their opportunities to live in the community. Agencies currently put their efforts into group homes that do not handle both situations, and this needs to be remedied.
Michele Mann, ECD Connections Like I mentioned before… integrating service delivery from Provider 50 services into the Early Intervention system is probably the most prudent and cost effective way to offer services to the youngest diagnosed with ASD. The EI system currently in place has failsafes to make sure there is proper outreach, community education, appropriate services (SLP, PT, OT, hearing & vision, augmentative communication and more), and timely delivery of services. From my experience, the current system for providing services for ECE kiddos on the spectrum doesn’t seem to be working. If PA is intendant on identifying/servicing kiddos on the spectrum earlier than before, why not integrate services and supports with the current Early Intervention system. Their system has strict timelines, evaluations and a wealth of services already in place to assist earlier diagnosed ASD kiddos.
Star Ford, Divergent Labs A program should be tested where autistic and other disabled people can call for help 24 hours a day on unlimited topics, like a disability ombudsman - particularly on the question of whether this saves cost and improves outcomes versus pre-planned carer services on a schedule.
Anonymous I think needs vary a lot. Perhaps providing more realistic expectations concerning the doom that is their future.
Melanie Curry, Ron Davis Autism Foundation The Davis Autism Approach Programs significantly enhance the functioning, quality of life, and the ability for an individual to participate fully in their life. The programs have been developed and adapted to address the needs of individuals, no matter what their age and no matter where they ‘are’ on the spectrum. The Davis Autism Approach Program is achieving life-changing outcomes for autistic children as young as three through to adults in their seventies. In addition, the program has been extremely effective for non-speaking individuals right the way to those individuals who do not have high support needs. Because the programs allow autistic and neurodiverse individuals to be able to make sense of and navigate the world, without the need for any type of rote learning, or continual ‘training’, they provide a foundation on which individuals are not only able to thrive and fully experience everything they wish to in life, but also become contributing members of society. The Davis Autism Approach programs help individuals unlock their inherent intelligence and gifts so that they can share them with the world. This ensures a very high quality of life, both for autistic individuals and their families.
Natalie Crum, Rancher Toads Stop Autistic Abuses
Anonymous The Davis Autism Approach Programs significantly enhance the functioning, quality of life, and the ability for an individual to participate fully in their life. The programs have been developed and adapted to address the needs of individuals, no matter what their age and no matter where they ‘are’ on the spectrum. I have seen life-changing outcomes for autistic children including individuals who have been non-verbal and/or with low communication skills. Because the programs allow autistic and neurodiverse individuals to be able to make sense of and navigate the world, without the need for any type of rote learning, or continual ‘training’, they provide a foundation on which individuals are not only able to thrive and fully experience everything they wish to in life, but also become contributing members of society.
konjoo lee It is to change the disease state into a normal person through a study to fix the brain's electrical failure in mental illness.
Paulina , Parent Entendimiento de los apoyos que las personas con autismo necesitan para acceder los servicios y sistemas. Es muy importante que las familias tengan conocimiento de lo que es el autismo, sus causas, apoyos y servicios disponibles. Translation: Understanding of the supports that people with autism need to access services and systems. It is very important that families are aware of what autism is, its causes, supports, and available services.

Multiple Themes Addressed

Respondent Response
Anonymous More services need to be made available for Autistic adults, and also for children to access on their own if their parents/guardian do not or cannot connect them with services. More trauma informed care needs to be done by those who are neurodiverse themselves. In regard to safety, self-defense and self-advocacy needs to be taught to Autistic people instead of compliance. Counseling, TMS (Transcranial Magnetic Stimulation), Zoloft. Access to resources like ASAN from a young age. Themes Addressed: Adults, Inclusion
Lisa Wiederlight You cannot care for children with autism until you care for their parents/caregivers. WE NEED SUPPORT. How do we increase the amount and quality of respite providers? How do we address safety concerns of people with autism --Ask the National Autism Association. What supports are needed in community settings to increase the employment and housing opportunities for the autism community? What happens after graduation and why are most people with autism left sitting on the couch in their parents' homes? This is unacceptable and affects everyone involved. We must do better. Themes Addressed: Caregivers, Housing and Employment
Kathleen Meyer There needs to be a lot more deeper understanding of the ways in which autistic people are different from neuro typical people. Without deeper understanding housing, employment and safety are not possible. One would think that case managers would understand autism, but that is not the case. Employers, principals, landlords are all generally uninformed. Autism appears to the public as something kids will grow out of, which of course is not true. Some employers think that the autistic adult will 'catch on' to reading what is needed next, when actually that reading the invisible social cues are precisely their disability. There are government sponsored groups that preclude those who can't self advocate. Self advocacy tends to be part of the weaknesses in autism. Services from people and organizations that don't truly understand autism are not successful. Training and nurturing of autism caregivers as a career. Autism is complicated. Severely disabled autistic persons do much better with caregivers who understand autism and the uniqueness of needs of the person that they care for. Currently it is not possible to create a career of caregiving. There is a shortage of caregivers that is a crisis. It is not possible with the current policies to be a caregiver and have full time work and health insurance for example. This is a stumbling block that affects our aging population as well as our population with disabilities of all kinds. Our social services have no autism training and do not understand the issues. Training, education and proper career paying of caregivers. We need focus at least as much on the severe end of the spectrum as on the more functional end of the spectrum. With communication and social abilities the core of the disability services are not enough. Parents are providing a tremendous amount of support for many of those with autism and we tremble with fear about when parents can't do it any more. Services are not enough. There are no services that take on the responsibility of a person's real needs like housing, health, and wellbeing. These special people are at high risk of abuse and neglect and few will ever be able to self advocate because that is part of the core of the autism weakness. New living situations that create and nurture long term relationships where neighbors and friends could possibly help advocate. A neighborhood of ""guardian angels"" would be ideal even for those with more capabilities for independence. Neighborhoods where education about autism is available for everyone to understand and nurture long term relationships. Themes Addressed: Acceptance, Accessibility, High Support Needs
Chris Colter Functional Medicine Doctors need to be covered by insurance because they have the best outcomes with autism. As I said earlier, most pediatricians know nothing. All they do is prescribe medication. They know nothing about the microbiome. Parents need care, too. We have PTSD for all we have been through. The kids need hope. Anxiety is a big problem, so more research needs to be done in that area. Most of these kids will end up in group homes if we don't come up with more interventions that work for autism. Themes Addressed: Accessibility, Caregivers, Mental Health
Orla Putnam, University of North Carolina at Chapel Hill Service access, particularly for education, mental health, and employment, are incredibly important and should be a top priority. Providing more services to the community is very important, as well as integrating people with disabilities into community environments, promoting autism acceptance, and making access to diagnosis and mental health supports more readily available. Themes Addressed: Accessibility, Community
Margie Bruff, University of Colorado at Boulder resources for driving (headlights, sounds, and ever-changing traffic patterns have been big challenges and sources of anxiety for me); resources in higher education (there is so much focus on ADHD, I was originally sent for ADHD testing after telling my university psychologists about my (now-diagnosed) autism symptoms; delivery idea: work with social media activists/influencers like Paige Layle!! Themes Addressed: Community, Education
T. A. Meridian McDonald, Vanderbilt University Medical Center We need: *More research on strengths & social value of autism *Less research on the eugenics of autism which is further creating social stigma & marginalization *Better understanding of the strengths of autism & their developmental pathways so that we can scaffold autistic people toward autism excellence *Affordable housing with access to transportation *Research on how to increase tolerance & acceptance of people with autistic preferences, interests, & mannerisms *More research & services to better help autistic people cope with & overcome marginalization in society *Funding directed to the Department of Labor to help businesses better support autistic people *Research regarding how to help autistic people become entrepreneurs *To help autistic people further establish autistic communities. We need to be working WITH autistic people and not AGAINST them *More research and services to address co-occurring conditions in autism. This includes adapting and/or developing interventions suited for autistic needs (cognition, transportation, emotion, sensory, etc) *More research addressing insomnia, cardiovascular disease, diabetes, obesity. This research is NOT being funded for cognitively-able autistic adults because of major gaps in NIH funding priorities. Further, the NIH views autism as a ""primary disease"" and not as a ""marginalized group"" that experiences disparities in physical health and healthcare *To stop using conversion therapy on autistics at all ages Themes Addressed: Acceptance, Community, Housing and Employment, Inclusion
Jenn I'm a single mother of a 24-year old with autism. We live in Bucks County PA. There are NO decent services - from general medical care to autism. My son has not seen a doctor in five years due to the lack of appropriate care. And once again, I'm sitting here dealing with him having no medications because his ""medication"" physician [redacted] delays in renewing it. He's been a patient there for 11 years and this is the treatment he receives!!! It's horrendous! I will need to quit my FT job and care for him. Once an autistic individual turns 18, they are forgotten about and/or neglected in care. Themes Addressed: Accessibility, Adults
Anonymous Please separate out severe autism and address that separately. I see very few studies regarding severe autism and quality of life. Adults with severe autism (routinely kicked out of day programs- so best practices for day programs), housing options Themes Addressed: Community, High Support Needs, Housing and Employment
Anonymous Improvements in services for adults especially vocational rehabilitation and independent living services should be a high priority. These services are still operating on archaic information and systems. Individuals with autism continue to be denied or drop out of services due to mismatch of service offered and needs. There should be a focus on ""soft skills"" interventions for improving employment outcomes and provider education programs. Themes Addressed: Community, Housing and Employment
Jessica Van Schaick There is a drastic lack of services for autistics after they age out of the school system. You have to carefully examine the individual state policies from a young age in order to get your child on waiver lists to even have the possibility of services when they are 18+. The impact on the family is massive. Often one parent must quit their job in order to stay home and assist their child. This creates a large financial issue which further impacts the child as the parents are not able to save enough to support their child long after they are gone. Insurance companies don't want to pay for ABA services after a certain age. Insurance companies limit speech therapy (and other therapies). Even the federal government's insurance policy limits the number of speech therapy visits for an autistic child each year - there is no appeal process for it even when the child is non-verbal. I think police and public safety departments should all have a system to register individuals that are elopement risks (some do - for example the ""take me home"" program). Schools need more special education staff and training, particularly for those with the most severe behaviors. Themes Addressed: Accessibility, Adults
Stefanie Lombardo, Parent. Guardian. Caregiver. Advocate. As an adult who sits in the lowest percentiles for independent functioning, my son's access to any meaningful community services in my state of VA is nonexistent. There is one adult day center in our area who will provide services to our son without a community waiver (we've been on the state's waitlist for nearly 12 years and counting), and they require a full time placement, which is cost prohibitive for our family. We have not found an occupational therapist who will work with someone his age with his needs, nor have we found in home respite care without a waiver. We. Need. More. Of. Every. Service. Listed. In. Your. Question. Themes Addressed: Accessibility, Adults
VIRAJ D. VYAS, PSW, CHW, Job Coach, A volunteer Advocacy Ambassador for Autism Speaks. 1) Make people aware about available resources through Dr. office, schools, and libraries. 2) Healthcare and insurance coverage. 3) Computer based Education system. People with ASD learn more effectively with computer software. You can teach them life skills, social skills, and provide Education/Job training without spending countless hours. They can be a successful individual with high paid job. 4) Caregiving and family well-being. 5) Create ID card for each person with ASD for safety issues and provide information to each county law & order department. Provide safety ID pendant with number to keep in pocket or wear as a necklace or wear as a pin. Themes Addressed: Caregivers, Community, Education
Anonymous Service accesses needed: various communication methods regarding all companies, all small businesses, all government bodies. Such as and strongly emphasized: email, live-messaging, comment boxes. Second priority methods: phone calls, voice messaging. Accessibility options should never be paywalled and that policy must be enforced to private companies. Customers and employees are affected by the lack of accessibility options. Education: Autistic experts who are Autistic screening children in school and thus providing support for them while in school. Same in high school and higher education. There must be Autism resources readily available to students, teachers and staff. Parents, future parents and adopting parents must be educated that Autism is not a bad thing and they can learn to support Autistic children/adults. Themes Addressed: Accessibility, Education
Suzanne Rossi More opportunities for adult engagement - in community - employment, socially, etc. Isolation seems to be the ""safest"" route for them because they can't upset anyone if they stay by themselves, but it creates mental health issues that get worse the older they get. Themes Addressed: Community, Housing and Employment
Anonymous Public colleges w reduced price courses with no end or extended end dates so autistic and other disabled/disadvantaged people can work flexibly.. Suicide prevention. Education of psychologists to better support autistic people. Themes Addressed: Education, Mental Health
Anonymous Research should focus on the economic, social and health benefits of including Autistic people in education and employment. Reducing the stigma around autism should be a policy priority. We desperately need research and policy about the harms of behaviorist approaches and discipline used on Autistic kids in schools, including electric shocking, physical restraints and stigmatizing language. Themes Addressed: Acceptance, Community
Anonymous Interventions aimed at improving educational environments and promoting inclusion could greatly improve autistic QoL. - AAC - Mobility aids for those with co-occurring disabilities - Sensory aids - Stim toys - Non-behaviorist educational resources on how to deal with neurotypicals - Educational resources for teachers, doctors, and other professionals likely to misinterpret autistic behavior and demean, abuse, or ignore autistics Themes Addressed: Acceptance, Community, Education
Anonymous Services and research which allows those with autism to function independently yet safely, to the greatestdegree possible. Housing in the community, simplicity in rules and regulations and application processes regarding qualification for disability services generally, assistance in appropriate legal pusuits such as guardianship or trusts, or special education disputes with schools. Equity among the states, which differ greatly in the amount of support given and how hard it is to apply for or how long the waiting list is. Adult housing is an urgent need because the caregivers tend to die off eventually. Yet i do not support institutional settings. Themes Addressed: Community, Housing and Employment
Erin, Parent Education, respite care, emotional support, and support for independent living in the community Themes Addressed: Caregivers, Community, Education
Anonymous Behavioral health (education on how to manage life issues) and supportive services (housing, food, help to maintain support.) Education of the general public to accept this type of disability without judgment. Biggest gap in services is probably that there are NO SERVICES for adults. Themes Addressed: Acceptance, Adults, Community, Housing and Employment
Dr Pamela Hodges, MGH ASD clients need support in housing, tuition for community college, psychological services focusing on higher functioning ASD and life coaches. Themes Addressed: Housing and Employment, Community
Vanessa parrott Actual accessibility to aba and other therapies, Accessible respite care and home health aids… And support for families suffering from violent children/teens & adults on the spectrum Themes Addressed: Accessibility, Caregivers, High Support Needs
Cyndi Kirby Support for parents respite care and education. Training of first responders in autism awareness. Schools with programs designed for autistic children. Universal healthcare. Programs to support adult autistics since statistically the majority of autistics will never be able to live without support- housing, work assistance programs, etc Themes Addressed: Acceptance, Adults, Caregivers, Education
Liz More focus on community support and acceptance would be very useful. More resources in improving life skills, social skills and other life necessities, especially in adulthood, are needed. Most resources available are for kids - but autism does not disappear in adulthood. Themes Addressed: Adults, Community
Anna Integrated communities that are sufficiently interdependent benefit everyone. Interdependent living is much better than independent living, and I'd like more of a community based health model than individualized. Other societies don't need entire interventionist fields because the people already take care of each other enough, and the affordability of therapies in general is in question. Disrupt the school to prison pipeline and fund social work and education, focus on retaining professionals through adequate treatment and pay, they deserve dignity too. Themes Addressed: Accessibility, Community
Anonymous Recreational options, swimming, sports, clubs, etc with appropriate support and training for staff. Give incentives for businesses opening their doors to this underserved community! Police, first responder, medical personnel training. Respite options for caregivers. Waive the waiting lists for state services. Themes Addressed: Acceptance, Caregivers, Community
Ella Davis The schools are failing and/or struggling to identify and understand how to work with students with autism. This if further complicated by these students having difficulty with being able to comply with the stereotypical office assessment. We need more teams and/or providers similar to Anne Carlsen or at Ann Carlsen who can go out to the homes and the school districts around the state to complete observations and full assessments to better assist the schools and communities with recommendations and what supports to provide. There is a long waiting list, and these students are bearing the brunt of the lack of good services related to assessment when the schools are unable and lack the expertise to assess these students. Access to good external assessments are needed for these students, and it is not happening. Themes Addressed: Accessibility, Education
Rebeka Edge, Behavior Matters Better adult services, more housing options, specialized vocational training, education (both the individual with autism and the family/caregiver). More community supports, Themes Addressed: Adults, Education, Housing and Employment
Savannah W., Late in life, diagnosed autistic, woman, wife and mother. Autistic backed therapies to help us succeed relationally, professionally, mentally, emotionally…whatever our version of success entails. Support for the autistic individual in their community: i.e. friendships, special interest groups, schooling, job opportunities etc. Support for families that focus on positive aspects, as well as the challenging, but not acting as if the diagnosis is a tragedy. More generally speaking, we need doctors that are informed about autism and it’s co-occurring conditions as well. We need to be taken seriously and accommodated without pity, or ableist based encouragement. We need therapies that don’t promote the idea that “functioning in society” is limited to suppressing our natural state of being for the comfort of others. It abuses our right to say, “no,” and to trust our own feelings and experiences, which further creates devastating trauma later in life. Ideally our restaurants, grocery stores and businesses would set aside sensory friendly times to visit, or rooms that have our support needs in mind. As a society, we’d acknowledge and accept open “stimming” behaviors and meltdowns as a natural response for some autistic experiences. We’d support autistic individuals to and through their adult years, and pour funding and quality of life based research into helping autistic adults achieve their goals in life. We want equity to be the priority, not to constantly be viewed as incapable, or highlighted by our perceived deficits. Themes Addressed: Acceptance, Inclusion
Amy Morosini Education programs, career development programs, social programs Themes Addressed: Education, Housing and Employment
Katlyn Social and emotional learning for non-autistics. One of the biggest things in the way of preventing autistic people from having a fulfilled life is how they are treated by other people and larger society. They arent allowed to stim, theyre judged and mocked, theyre segregated out of society. The wider public should be more educated and the education system needs to be more emotional regulation and social connection focused than trying to force autistic people to act neurotypical or adhere to neurotypical standards of behavior and production. Themes Addressed: Acceptance, Community
William Ash I think more research is needed for autistic adults, particularly adults that are middle aged or seniors. The little research I have found is that quality of life are less for older adults on the spectrum. How are adults that receive a late diagnosis or no diagnosis coping? I think looking mental health services for those individuals, that are most likely not going to have health insurance that might pay for those interventions, will be key to quality of life. People like me with ASD that have been struggling being undiagnosed for most of their lives really some kind of support after a diagnosis. Themes Addressed: Adults, Mental Health
Lisbeth Little Health and safety- how do we get quality health care from health care providers who understand autism, childhood trauma, anxiety, and non verbal communication? How can we get access to doctors that know a crowded lobby with a prolonged wait are triggers for children with autism? How can we train 1st responders to understand how to interact with an autistic person who may need a different approach so that caregivers aren't scared to call them in the event of an emergency. How do we provide real needed skill building resources to prepare our children to hold jobs, to attend college, to bridge gap in grade level curriculum, to use transportation. How do we build sustainable job readiness and job coaching once that person becomes an adult? How do we ensure schools provide an appropriate and thorough transition plan to adulthood? How do we provide accessible health care and community agency supports for parents who have trouble accessing those systems due to inequities and bias? That's what parents need. We need real solutions and money being invested wisely and not in the latest ""it"" thing. Themes Addressed: Acceptance, Accessibility, Community, Housing and Employment
Anonymous (1) Services supporting paid employment and access to higher education and trades, (2) access to mental health services, (3) supports and services for underserved groups [rural families, indigenous families, non-english speaking, etc.]. Themes Addressed: Housing and Employment, Inclusion, Mental Health
Shilo Liebau, parent Service access, education, safety and community settings are completely lacking. I put my son on the AUtism waiver list when he was 4 1/2 and never received a phone call that services were available for him everytime i followed up. He is now 18. He will not be able to get a paid job, drive a car etc.... I am trying to figure out to apply for SSI for him since he will always live with us. More education and roadmap for what to do once your child becomes 18 as an adult. Themes Addressed: Accessibility, Adults
Shirley Gaw, NV SEAC Education: Curriculum and methodologies to meet the diverse learning needs of the student, specially students who are diagnosed with dyslexia, dysgraphia and dyscalculia, from what I've seen and heard are very common these days; Caregiving and Family well being: Make it available for every state in the USA to enable family members to be paid as the disabled children's caregivers, that will help keep them safe at home instead of out of home placements; Health: enable families to access alternative healthcare practitioners using their health plan to promote health and well being of the disabled child/ adult. Themes Addressed: Accessibility, Caregivers, Education
A.K. Access to behavioral supports (ABA) at a young age for those who need it. This should be regardless of insurance coverage or state-based decisions related to Medicaid coverage. In the context of the pandemic we have more families needing behavioral supports than ever before. Parent training, community based education to minimize stigma and encourage earlier diagnosis are all needed. Eliminating arbitrary caps on insurance coverage for therapy or out right denials requiring clinical providers to spend hours (literally) on a phone to argue with an insurance company to cover speech therapy for a young child who is non verbal. Themes Addressed: Acceptance, Accessibility
Katherine Troyer, parent/guardian of adult with severe autism and severe intellectual disability Need a continuum of services and programs given how variable the needs and abilities are for adults on the spectrum. The adult service system is overwhelmed and many desperate families are left on waiting lists with no services. Need to survey the adult population and determine service and program needs. Need specialized day programs and residential models, some congregate and on campuses, for those with severe autism. Need much improved staff education and training. Need involvement of professionals, including psychiatrists, nurses, social workers, occupational therapists, art and music therapists, exercise specialists, etc. Need a crisis intervention service that is responsive and meaningful, including access to specialized inpatient beds. Need greater access to mental health and health services that understand the population. Need hospitals to be better prepared to serve the population inpatient, including those with severe autism who need 24/7 one to one supervision. We can talk about community integration but we need to start talking about reality. Many adults on the spectrum will need lifelong intensive supports and supervision. Themes Addressed: Adults, High Support Needs
Wayne, Parent We need to make more in-home and in-community resources available and well as direct federal money to families for use in paying for services in a self direct model similar to New York State. We also need to build assisted living house that is independent around the country. Not necessarily group homes, bug group villages where people with different levels of autism can have different levels of independence. Themes Addressed: Accessibility, Community, Housing and Employment
Lisa These are critical - both expanding the topics listed as well and lowering the hurdles to accessing services. Employment is the number one issue. Themes Addressed: Accessibility, Housing and Employment
Colleen Allen, Autism Alliance of Michigan 1) Adult services: policies that cap interventions at 18 (Michigan’s state insurance law) or 21 (MI Medicaid benefit) need to be extended and accessible to support adults independent living needs and post-secondary supports and services, or employment assistance, 2) Policies that cap interventions at 18 (Michigan’s state insurance law) or 21 (MI Medicaid benefit) need to be extended and accessible to support adults independent living needs and post-secondary supports and services, or employment assistance, 3) Services to support the severely affected segment of the population; living/working communities, not restricted by HCBS/Olmstead policies, 4) Accessible, high quality psychiatric care and facilities – prevention programs, stabilization, and transition to community supports for those experiencing severe, behavioral/psychiatric crisis Themes Addressed: Accessibility, Adults, High Support Needs
Anthony J Thompson Family help in the form of quality home health aids, Need for much more funding on Adult day habs with a medical component. Need for more mental health funding. Themes Addressed: Adults, Community, Mental Health
Maxim Tchoul, parent of an autistic man I believe the following services are important: - employment: expanding availability of jobs suitable for autistic people, including ability to work part time, supporting employers to help them accommodate employees with autism. - transportation services for autistic people (such as paratransit) - community services to provide options for autistic people to socialize Themes Addressed: Community, Housing and Employment
Anonymous Transportation is a huge problem for many adults on the autism spectrum. Also help for caregivers is very important. Themes Addressed: Caregivers, Community
Anonymous So much is needed. The biggest struggle for us as a family with two asd kiddos is childcare and public education. There are NO resources for families that need childcare. Respite is not enough. Additionally, teachers are not educated enough to work with the ASD population. Our community as a whole is failing the ASD community. Themes Addressed: Accessibility, Education
Anonymous The largest gaps in services, delivery and priorities are for those 18 years and older. The need for affordable, independent, safe and secure is overwhelming. Aging parents and caregivers have extremely limited options outside the home. Transportation is also lacking and too expensive for those on limited income and on social security and who work making minimum wage. Themes Addressed: Adults, Community
Cheryl When a child has severe autism services are minimal. You might get one hour of therapy a week covered by insurance. A child with very mild autism will get one hour of therapy a week. A child with severe non verbal autism will only get one hour of therapy a week. Doesn’t make any sense. Research- has anything been approved by the insurance companies besides the one hour of therapy a week and drug the child up? I doubt the Insurance companies will cover anything unless the Government forces them to. They don’t care if your child is suffering from autism. All they have to do is provide one hour a week of therapy or maybe some psychiatric drugs to zombie your child out. Everything needs to be better for our disabled community. Most men leave when a child becomes disabled and for one person to handle everything is beyond stressful. Daycare does not exist for severely autistic non verbal children with behaviors. So how are single mothers supposed to go to work 40 plus hours a week when they have no daycare. There is NO help for single mothers to keep their disabled child at home. If the State believes you are in crisis mode and accepts your child into PUNS the services they provide does not help with keeping a roof over the child’s head. It’s money for other people and they have to be registered with the State. The State won’t help keep a child in their home until they are 22. The State will offer Medicaid but good luck finding local qualified doctors that will accept Medicaid, especially a dentist. The Courts do not make a man pay one dime more if their child is severely disabled. The women have to take all the hits. I had to quit my job due to no daycare. I no longer get to pay into Social Security, have a retirement fund, lost my career, forced into poverty and I don’t receive any child credit or stimulus checks. Let’s start with updating SSI and PUNs. Do Something. There is NO help for severely autistic children. Public schools don’t have enough staff to provide a safe environment for these children. Hospitals staff are not educated on autism nor are their facilities equipped to have a Autistic patient. Themes Addressed: Accessibility, Education, High Support Needs
Elke Drayton More centers to help people succeed in life from early childhood to an fulfilling adult hood. Driving schools for people witj ASD. Housing for people with ASD. If we can have Assisted Living for the elderly why can't we have Assisted living Apartments for people with ASD? Themes Addressed: Community, Housing and Employment
Nancy Kearney, Parent adult autistic man in Massachusetts Service access-number 1 Prior to Pandemic Adult Services for ADULTs on the spectrum was holding on ‘by the skin of their teeth’ due to lack of ability to attract staff-due to lowest hourly pay. This problem has been dramatically exasperated during the Pandemic. My adult son has been OUT of his day program for almost 2 years (as of 3-11-20) when his program closed. The program has RE-opened but the adults like my son who need day service to function are out of luck due to a lower number of staff who remained at the program. I have not received any correspondence as to when and IF my son will return to the program. At a time in this nation when we are inviting millions of people into our country-WE HAVE DESERTED OUR ADULT AUTISTIC and other disabled. The hourly rate of pay needs to be increased considerably to service our disabled!!!!!!!!!!!!!! Themes Addressed: Accessibility, Adults
Edythe Koerber , Mother We ourselves have struggled with school to community transition and Kansas waiting lists of 8-10 years for HCBS services does not help. Themes Addressed: Accessibility, Adults
Autistic Self Advocate and current PhD student in Disability Studies I think it is important to focus on how we can make education and employment setting more equitable for everyone so that autistic people as well as other disabled people are able to participate in the community along with their neurotypical peers. One way to do this is to focus more on spreading acceptance. Many people have misconceptions about autism and therefore focus more on the label and the ""negative"" characteristics instead if the whole person. Themes Addressed: Acceptance, Education, Housing and Employment
Justin Pimentel Reducing added costs for care given to autistic people is very important. A more integration-focused educational style that also provides accommodations where needed is also important. Themes Addressed: Accessibility, Education
David Shapiro To me, adults with autism have far less support of services & treatments than children with autism. To me, large & small employers, who are not disabled, need to learn more about people with autism, so they can adopt their work settings to those people. This is not being done in America. Themes Addressed: Acceptance, Adults
McKenzie Hanson Mentorship and apprenticeships. In home supports to help parent. ABA therapy doesn’t help but maybe developing visual routine structure that works with each individual. Apps that inspire learning, AAC for speech. I think developmental delays starts in public schools where standards don’t also integrate neurodivergence. Musical Theatre is a great way for role playing, memorization, rhythm, and structure, and building confidence. How can we incorporate role play in class? Rhythm and repetition builds memory and confidence. Using music to teach. Using art to express and regulate emotion. I think the answers are already here, we just need to integrate them into proper therapy and learning programs. Develop more public schools designed around play. Just like other schools measurements of learning, you can gather data through measuring the learning styles. You can survey needs through provided iPads and apps. What works and what doesn’t. Take notes from therapists in the schools. It’s not a disorder it’s a different brain structure with different needs. Why would a philosopher be told their daydreaming was a problem? A scientist told their hyperfocus special interest was a disorder. An artist or music told they are emotional or scatterbrained. We wouldn’t have space cars if Elon Musk lacked confidence of what he must do. Allow people special interests and develop them young. Love of curiosity is greater than fear of failure. Themes Addressed: Caregivers, Education, Housing and Employment
Ryan Why did it take 4 other questions before this to get to this point? This should have been question #1. -find other ways of addressing behavioral challenges that isn't ABA that is paid for by insurance -change the name of the diagnosis and get rid of ""disorder"" -education and change in society and medical professionals' view of autism to be more neurodiversity friendly and accepting and including -more autistic-informed training and higher pay for people to be caregivers, in home support providers, and care supporters of autistics so parents can be able to earn income while caring for their child if need be -more disability friendly communication materials -more work support programs -additional ways to complete K-12 education that better mold to autistics' ways of learning -more mental health therapists trained in EBPs to help mental health challenges in autistics -respite and community support for parents so parents can do more self-care and less burnout -more access to supported living for autistic adults -more research on supporting siblings of autistics of all ages Themes Addressed: Acceptance, Accessibility, Inclusion
Helen Leung decreasing barriers to accommodations and services for marginalized communities, increasing funding for in-home care, increase funding for jobs programs and disability payments, education for neurotypical people about de-stigmatizing Autism Themes Addressed: Acceptance, Accessibility
Tosha Home and Community based services, as well as ACA are very helpful to the autistic community. Cutting down on harmful practices neurotypicals preform on autistic with little to no research of their effectiveness would be a great assistance. Get rid of aba, bleach enemas, and plans for intrusive brain devices. Increase normalization around our common communications such as stimming and nonverbal communication devices (AAC) like speech tablets. Invest in equipping autistic people with a reliable support group network.(Trusted friends or family) And giving them toys and letting them indulge in their favorite activities to encourage neural growth. Natural therapeutic activities like nature walks could also help. Encourage educators to be patient in allowing autistic children to go at their own pace and teach the teachers against harmful punishments that involve restraints or beatings. The goal being for the autistic individual to progress at their own unique pace. Themes Addressed: Acceptance, Community, Education
Anonymous Greater emphasis on assisting the diagnoses individual in ways that serve them (rather than focus on changing their behaviors to serve other people around them). Greater emphasis on helping diagnosed individual understand their own symptoms and how ASD affects them and providing them with support to make their own choices about how they want to manage them. Other ways of assisting those diagnosed with ASD and their families behind ABA or other approaches that require the individual’s needs and comfort to be placed below those of the people around them — forcing the individual to change for others’ comfort. Better understanding of how schools can better support those diagnosed with ASD. Greater emphasis on allowing those who are nonverbal to communicate in other ways without being dismissed. Also greater emphasis on positive qualities and abilities of those diagnosed, and how these can be assets. Greater emphasis on research with those diagnosed with ASD as research leads, centering the needs of those diagnosed with ASD. Themes Addressed: Acceptance, Education
Elizabeth Axford Services that enable accommodations for nonverbal communication, autistic sensory processing and executive functioning, and methods to cope with executive dysfunction, and emotional dysregulation, will be most effective. The goal should be providing independence and stability to autistic individuals, without forcing them to rely on family or tether their safety to those they do not trust. Services that provide learning support and help in acquiring accommodations for sensory processing, communication differences, and difficulties in executive functioning should be prioritized. More education for the general population is required that does not paint autism as scary, a child’s disability, or a boy’s disability. Themes Addressed: Acceptance, Community, Education
Teresa Olafson Develop social inclusion of neurodiversity with recognition for acceptance of all spectrums of social divergence through community supports. Policies should focus on normalizing community base resources that optimizes individuals' functioning and creates sustainability of programs by improving livelihood, productivity and health status thus affording individuals the ability to be productive citizens. Policies should reduce Adverse Childhood Experiences and social determinants of health for Autistic individuals and families which will increase health status and reduce resource consumption over a life time while optimizing individuals' achievements. Themes Addressed: Acceptance, Community
Andrea Grover This is the top priority to actual autistic people. We do not need or want cures. We just want support and acceptance. Again, research and delivery of services to support effective deployment of workplace accommodations would be very valuable here. Proper accommodations would allow more autistic people to succeed with independent living. We need incentives and support for training diagnosticians across the country with up-to-date methods, particularly for assessing adults and women. There is literally one provider with the credentials to diagnose adult women in the entire states of Nebraska and Iowa, and one person in Missouri. While diagnostic services are always in high demand, the support for adults and women are particularly poor. Themes Addressed: Adults, Community, Housing and Employment, Inclusion
Brittany Diane Daniels As an autistic woman myself, I need more research done on needed live long supports for autistic people and getting health insurance coverage extended to autistic adults over the ages of 18, 19, 20 and/or 21 years old, because I am beyond tired of having to go through a high deductible state health insurance plan here in Georgia where it will make me pay $75 until I meet a $2500 in network deductible or $5000 out of network deductible to be able to get needed speech therapy and the fact non of my other in person therapies are covered as well. Themes Addressed: Accessibility, Adults
Dax, Autistic Self-Advocacy Network, Volunteer The world at large needs to be made accessible. We are tired of being locked away in group homes and sheltered workshops. The world expects you to be able to socialize at will, work in a standardized way, drive your own car, do your own finances; and if you can't, your independence is curtailed so that even the things you can do are often denied to you. We need to be able to live in the community, and we need to be the ones controlling the services we get. Getting someone to help you manage your medication should be as unremarkable as getting somebody to change the oil in your car. Living on your own should be the default, not an unachievable dream. Themes Addressed: Accessibility, Community
mother, guardian, and advocate Implementing interventions in community settings is priority as is family supports for mental health. I needed emergency respite recently and could not find it. Anywhere. Themes Addressed: Caregivers, Community, Mental Health
Helen English, Children's Home of Wyoming Conference There needs to be more education for the general public ESPECIALLY first responders on Autism. Things like a data bank incase they get lost or runaway. A place where parents can register their name, address and phone number for emergencies. Schools need to be given the funding to the get equipment, technology and staff needed to support these students effectively in the classroom setting. There also needs to be funding for respite for the families. Tv and radio commercials making the public aware of how to react or not react when they encounter someone with autism. Let the public know that the spectrum is very broad and no two people are completely alike. There should be a special task force set up to educate the public and train first responders on what to do when they come across with someone who has autism. In an emergency how to safely handle an autistic child in an accident where the adult is unable to advocate for the child. Themes Addressed: Acceptance, Community, Education
Allison What supports are needed vary widely from person to person. For children, services are often provided through schools. This is a fairly effective system, though someone needs to ensure that the services are of sufficient quality and quantity. People delivering these services should be trained in how to work with autistic people. During a meltdown, autistic people may harm themselves or others or break objects. Measures should be taken to prevent meltdowns, recognize the signs of a meltdown, and prevent damage or injury if a meltdown does happen. Physically restraining a child should not be done unless absolutely necessary. There should be a way for autistic people to get services after graduating school. The easiest way to do this is to set up community centers people can go to for services, though some people may require home-based services. These community centers would have specialists in various fields. Themes Addressed: Adults, Community, Education
Anonymous It's important to provide adequate support while still enabling the person with ASD to be independent and make age-appropriate decisions about their life. It's also important to make that support easy to access to make sure that no one gets left behind. Themes Addressed: Accessibility, Community
Aerienne Amadis-Noel Fey, Autistic (ASD 2) Communicating tools, communication coaching where autistic communication is seen as valid and NT/allistic people are educated on how to meet us halfway. Counseling that is ND friendly, medical services that are educated about comorbids like EDS and other things, accessible affordable diagnosis for teens and adults and especially women and marginalized people - up to date education and accommodations at medical places. Themes Addressed: Adults, Community, Inclusion, Mental Health
Ren Koloni Research and autistic writing shows that, when autistic people try to adhere to allistic ways of being, we suffer: our rates of suicidality surpass 30%, autistic burnout affects nearly all of us at least once before the age of 35, and there is virtually no research conducted on either of these crisis states - except by autistic people. These subjects are a health and safety priority for autistic people. That said, autistic people are also suffering from a drop-off in services and supports as we hit adult age (and this is one of the causes of our high risk of crisis). We are not only children. Autistic adults, especially when they did not know they were autistic until adulthood, need similar supports but often have no equivalents. We need access to executive function supports like visual schedules, task planning assistance, and emotional management strategies. We also need access to sensory management, including assistive technologies and sensory plans. I believe this is a public health issue. Making accurate information available to everyone - autistic and allistic people - is necessary for our quality of life and general survival. Themes Addressed: Accessibility, Adults, Mental Health
Anonymous Where do I begin? Abolish the marriage penalty for SSI recipients, and autistics who are on their parents' SSDI plan make it easier for an autistic person to cohabitate with a significant other and/or parent with a significant other, allow direct support professionals (DSPs) to support both autistic parents personally and help them parent their child or children, allow parents to work as much as they want without the risk of losing benefits, completely abolish forced sterilization (even if the sterilization can be reversed), train child welfare workers to work with autistics, and protect autistics from unhealthy narcissists. All but one of these problems are affecting my own well-being right now, and I'm trying to work through it. I'm lucky to be in advocacy groups that give me resources, but not everyone has resources. Healthcare should be easier to access because of all of the conditions (including mental health conditions) that co-occur. Themes Addressed: Accessibility, Mental Health
Catherine Cornell Service access and systems, health and safety issues, in the adults with severe autism category. Themes Addressed: Adults, High Support Needs
Anonymous There's almost nothing available to parents of Autistic children other than ABA services, which Autistic advocates have demonstrated are abusive. Why aren't more parents of non-speaking/minimally speaking Autistic children directed to a speech/language therapist who can help them implement a robust AAC system for their child? Most SLPs are under-educated on AAC as well. There are almost no services available for Autistic adults. There's no clear pathway to get a diagnosis for undiagnosed Autistic adults because all assessments are oriented toward toddlers, and many providers believe children outgrow autism. Many Autistic people could benefit from general ""talk therapy"" with a mental health practitioner, yet most providers are not culturally competent to serve Autistic people because they do not know anything about autism outside of what they were taught (possibly decades ago) in school. Many Autistic people are LGBTQ+ and struggle with finding support services that embrace their identity. Themes Addressed: Accessibility, Adults, Inclusion
Anonymous There is an unmet need for individuals with autism who struggle and are unable to maneuver any life skills, but whose intelligence does not qualify them for services and support. Many with lower intelligence that do qualify can hold jobs, have friendships, be integrated and accepted into the community. But my 32 year old son does not have low intelligence but cannot do these things. He does not qualify to receive services, supports or housing. He has behaviors but we have no supports or options other than to take care of him ourselves. We are in our mid sixties so his future is of immediate concern. It is devastating to know this population has totally fallen through the cracks of our system. Themes Addressed: Adults, Community
TP *We need more support for ASD girls and women as they are most likely to attract predators and abuse if not murder or suicide--we need training programs to protect them- train others to protect them, the girls themselves * We also need to implement a long term personalized vitamin program, as this is what causes the nervous system distress if they are born with genetic issues that can completey disable them until they are getting the proper vitamins- this would keep many out of institutions or off of permanant disability. All of these factors combined could create a much more healthy, safe and productive ASD population who can contribute massively if given the right biological, social and safety tools, which are currently not available whatsoever. *Educating non ASD folk is also critically important- and ideally being educated by ASD folk themselves would be ideal more so over than a neurotypical teaching the wrong things to other neurotypicals since ASD is a heavily misunderstood population. Access to safe housing and resources to reestablish- safety from violence and forced interaction. Again the vitamin program, and we need more mental health practitioners who understand the ASD paradigm ( double empathy problem) Also changing cirriculums so that more ASD folk themselves can actually work with ASD people in a systematized setting- unfortunately the best ASD folk will not get through a standardized counceling or therapy program to be a therapist for others since it is not attuned to the ASD paradigm- even though they could be more helpful to an ASD person given our empathy works fine with other ASD folks....but that is not within an ""accredited framework"" thus it becomes inaccessible to both the people who want to show up as therapists and those who are desperate for the help. Conventional therapy is not helpful or even applicable to most ASD folks after a shallow point. Themes Addressed: Acceptance, Housing and Employment, Inclusion
Anonymous How about noticing that autism doesn't go poof at 22. It's still a cliff. Housing is inadequate and frequently poorly staffed. Programs re largely babysitting programs without any meaningful activities. Themes Addressed: Adults, Housing and Employment
Autistic Self Advocacy Network Funding for services is crucial for supporting autistic people across the life cycle. ASAN approves of the phrasing and intent of the IACC in Objective 5.3. Funding related to Objective 5.3 comprised 62% ($14.3 million) of all Question 5 funding in 2017, and 61% in 2018 ($14 million). However, only 6% of all autism funding went to Question 5, and nearly half of that very limited funding (44%) went to the “practitioner training” subcategory. Practitioner training is not research into which services and supports work best for the diverse needs of autistic people — research which our community urgently needs. We call on the IACC to end the use of “creative accounting” and only count funding towards genuine research. ASAN encourages the IACC to prioritize increased funding for Question 5-related research into which services and supports work best for autistic people with varying ages, demographics, and support needs. ASAN recommends that more research be focused on what types of services are needed to assist autistic people at all ages — not just children and young adults. ASAN also recommends IACC promoting the involvement of a diverse range of autistic people in autism research studies, especially older people, autistic adults, BIPOC autistic people, non speaking autistic people, and autistic people with intellectual disabilities or complex needs. Themes Addressed: Adults, Inclusion
Christina Krasovich, Collaboration of Autism Society Affiliates in Wisconsin A major gap in medical services has been noted in psychiatry, dental, and vision care. Medicaid reimbursement for dentists needs to be increased to cover costs, as there are very few dentists who will see patients, and those that do offer limited care based on Medicaid guidelines. Changes in this area would address baseline health issues. Expansion in supportive housing and job training is needed to improve quality of life issues. In general, more supports for the transition from childhood/school-based supports to adult life are requested. Families need support navigating layered, complex, and disparate systems to access support and effectively plan for their loved ones as they grow up. Expanded access to advocacy and legal support is necessary. There is a shortage of psychiatrists and other mental health professionals in Wisconsin who are competent with autistic patients. Very few psychiatrists accept Medicaid, further limiting care options for economically disadvantaged autistic adults. Expanding funding past therapeutic interventions to include those that promote joy and positive mental health will also help to maximize quality of life. Cartooning classes, swim lessons, baking classes, community college courses … the list is endless. Themes Addressed: Accessibility, Adults, Housing and Employment, Mental Health
Martina Kuzenski The best kind of services and supports for autistic people and their families recognizes the individual's challenges without correcting the behavior or make attempts to make the child appear ""normal"". These supports should also focus on the autistic individual's strengths as there are strengths that autistic people have that need to be recognized in order to make adjustments for their challenges. There also needs to be supports for adult autistic people. There is a myth that autism is a childhood condition that the person outgrows once they become an adult. There are adults that are also receiving an autism diagnosis as an adult and some of the supports for children will not apply to adults. Themes Addressed: Acceptance, Adults
Anonymous funding for services to include caregiving and family well-being; early intervention funding; greater funding for job coaching to support adults with high needs Themes Addressed: Caregivers, Housing and Employment
Anonymous This is the most important question. The research should be done by autistic people, and/or in partnership with autistic people. Use participatory action research, critical participatory design (such as Katta Spiel does in Germany - working with autistic children to co-design technology they would want to use), etc. Most importantly, families desperately need respite workers who are (1) well paid, so they do not just quit after a year and (2) are trained in supported decision-making. Respite workers should be available 24-7 for adults with significant support needs, so that autistic adults can live in their communities. Autistic people should be allowed to hire and fire who they prefer as their respite workers. Better systems for funding housing and medical services in a timely and respectful fashion, especially for autistic people with other marginalized identities (i.e. - LGBT autistic people, autistic people of color, etc). we desperately need better housing, healthcare, etc service access for autistic people. Themes Addressed: Accessibility, Caregivers, Housing and Employment, Inclusion
Jessica Hardy, Independent It's so hard to be able to simply Google a number and get in contact with a human at an organization that assists Adults living with Autism. I struggle to find time and resources as a teacher working even though I am Autistic. I work in Aiken, SC (currently) and live in GA. The closest referral to even began to get counseling was in Columbia, SC. I am still looking, but the process has added additional stress to my work week. It's hard to juggle mental health, social life, and work without one of the three being neglected and I cannot always choose which one. That effects my mental health and my quality of life. I especially need the help now, and possibly grief counseling. Themes Addressed: Accessibility, Adults, Mental Health
Anonymous efficacious and cost-effective service, implementation of interventions in community settings Themes Addressed: Accessibility, Community
Corrie Whitmer Adults on the autism spectrum need access to services that assist them with activities of daily living that commonly present challenges in terms of executive function, such as cleaning and food preparation. They also need access to support for obtaining and maintaining employment, and for obtaining medical care. Autistic children in particular need access to integrated classrooms in which their needs are honored and accommodated. Autistic adults need regulations that ensure that workplaces provide reasonable accommodation and that they do not discriminate against autistic job candidates. All of these services should be easy to access, and in situations in which that is not yet possible, autistic people should be provided supports for navigating these systems. Additionally, the government should make available plain language information about all of these resources, as well as other programs commonly used by autistic people (including government healthcare plans, food stamps, and other programs for low-income adults). Themes Addressed: Accessibility, Adults, Community, Education, Housing and Employment
Anonymous Making it easier to jump through the hoops. Being able to find answers without talking to people. But also to be able to ask rather than guess what the [redacted] answers means. Easy to get to community center where you can bring your help needed stuff. To get help. We need more awareness of sensory isdues and more normalized sensory accommodations. We neef to work w manufacturers to leg them know scented stuff sucks, and loud/bright stuff in stores or for sale....needsvwarnings to remind peopke that it bothers us Themes Addressed: Acceptance, Accessibility
Peggy Hamby, Speech Language Pathologist As stated previously, social cognition is needed to maximize community and economic participation. There is a high risk of suicide and under employment in high level ASD individuals that need to be addressed. Themes Addressed: Community, Housing and Employment, Mental Health
Richard Conn Often adults on the spectrum age out of their support system. Parents die or are unable to help their child and no other family members are available. Community based housing which incorporates essential services such as meals, social work and support for health care and social interactions is almost completely unavailable. Many of these individuals will become isolated, homeless, unnecessarily ill, enter the criminal justice system or the mental health system. Housing based on community with supportive services can offer a life of inclusion and both mental and physical health. These facilities could combine and share individual’s budgets for services helping to provide more services to more individuals. Please focus on adult housing with supportive services as a priority Themes Addressed: Adults, Housing and Employment
Anonymous Access to a quality affordable and safe education, progressive language education to parents teachers and caregivers. More positive approach to the diagnosis as different not problem. More accepting environment in social mainstream settings like work environment. Music therapy and other forms of therapies that strengthen their ability to adapt Themes Addressed: Acceptance, Community, Education
Anonymous Public education and workplace accommodation. Themes Addressed: Education, Housing and Employment
Lisa Jeanne Graf Research on what enviroments are the most comfortable from a sensory standpoint for those with sensory sensitivities and then ways to motivate school districts and businesses to adapt these changes. Perhaps showing improvements in student outcomes or benefits from business reputations that translate into more profit, etc- selling the benefits that through universal design offer benefits beyond the disability community. Or perhaps laws need to be put in place to mandate these changes. Please teach people who are not autistic about our sensory, cognitive and social preferences. Autistic people eventually learn enough about neurotypical folks to survive. Education needs to go both ways - there is too much emphasis on asking autistic people to change. Please connect neurotypical parents with the disability community so they can learn how to parent an autistic child in the most affirming and supportive way. The autistic community is a huge helpful resource. Themes Addressed: Acceptance, Community
Jennifer Reppond, parent of ASD teenager / doctoral student Starting in about middle school, education needs to support the students on the spectrum with peer network interventions. These are proven (on a smaller scale) to help in gains of social conventions for ASD participants. By having TD peers assist with the social learning (more or less) of ASD students, ASD students can learn social norms. It is known that kids learn from their peers; so let's use this powerful tool. Teachers need to be able to fit in social learning for students to continually learn throughout their day. Pushing only academics is leading to over 1/2 of 25 years olds to do absolutely nothing after they leave high school - this is unacceptable! Understanding of the disability would be a great start - TD students, teachers (both SPED and GEN ED), administrators, people in the general public. Peer interventions for school aged kids on the spectrum (especially once in high school) Professional development for teachers to help assist TD students to have appropriate interaction with those on the spectrum. Future teachers need to be taught about autism in school before they step into the classroom to teach. For the majority on the spectrum, real life skills are much more important that standardized learning (standardized test scores). Most people on the spectrum need to understand how to get along in social settings and not Shakespeare. Themes Addressed: Acceptance, Community, Education
Sarah Conn, MS, OTR/L , CDPVTC Community re-integration, assisted living, and supported employment. Themes Addressed: Community, Housing and Employment
Damaris Ramos, Ron Davis Autism Foundation, Inc. We as a society need to learn that autistic individuals need some accommodations to help with sensory issues. This accommodations will benefit all of us, not only autistic individuals. We should be seeking the advice of autistic individuals and provide services designed by autistic individuals for autistic individuals. Services that do not require life long treatments or medications. Themes Addressed: Acceptance, Inclusion
Becky Rosenberg, Partners in Policymaking (Maryland) Gap: how people with disabilities are proportionately incarcerated (health and safety issue, service system, education, caregiving and well being) Autism Waivers and long waits for service support and respite (policy issues) Themes Addressed: Accessibility, Community
Anonymous - Prioritizing this area of research, delivery, and policy over the others; especially prioritizing service access, service systems, and supports that keep autistic people integrated in their communities - Learning from people on the spectrum about what works best for them - Developing education for caregivers and families that honors the dignity of people with autism and emphasizes the need to trust autistic people when we express our needs Themes Addressed: Accessibility, Caregivers, Community, Inclusion
GS, Autistic Person As an autistic person, I believe that research in this area should prioritize the best possible quality of life for ALL autistic people at all stages of life, not just children. We exist, and we continue to exist once we turn 18. I also believe that researchers should strive to correct historical inequities by focusing their research on the needs of BIPOC on the autism spectrum, autistic people with high support needs, autistic people with intellectual disabilities, autistic people whose first language is not English, trans and nonbinary autistics, and other groups neglected by researchers. For too long, autism research has prioritized white, cisgender, male, middle-class, anglophone autistics over all others and this is a big problem in need of fixing. Themes Addressed: Adults, Inclusion
Erin Prangley, Consortium for Citizens with Disabilities' Developmental Disabilities, Autism and Family Supports Task Force The Autism CARES Act authorized the development of evidence-based services and supports; however the resources have not been provided to develop the services. Clinicians and medical doctors who serve people with autism are often not trained to use the standards. Doctors are not trained to serve children and adults with autism. We need more doctors and other interdisciplinary services providers trained to serve people with autism. Once people are diagnosed for autism, medical professionals often fail to screen for other co-occurring conditions. The majority of people with ASD have co-occurring mental health challenges. Themes Addressed: Accessibility, Mental Health
Lindsay Shea, Drexel University 1. Appropriate behavioral, social, communication and sensory supports to maximize community participation and engagement (including relationship development) 2. Employment supports 3. Housing 4. Opportunities to promote community engagement 5. Mental health support provided by clinicians with expertise in understanding the mental health needs of individuals with ASD 6. Support and respite for families and caregivers 7. Support to bolster the acquisition of life and independent living skills 8. Support from primary care and specialty care medical practitioners who understand how to provide needed medical and dental care to individuals with ASD 9. Training of law enforcement professionals to understand the needs of individuals with ASD 10. Crisis and outpatient supports 11. Supports during periods of transition 12. Opportunities in Higher Education settings 13. Innovative state models, including managed care physical and behavioral health programs like the Pennsylvania Adult Community Autism Program and the Adult Autism Waiver (a fee-for-service program) Themes Addressed: Acceptance, Caregivers, Community, Housing and Employment, Mental Health
Anonymous In addition to Applied Behavior Analysis services that are so critically needed for adolescents and young adults with ASD with complex behavioral needs, additional services are needed to support their families and support these individuals into adulthood. For example, there is a dire need for crisis resources for families. Currently, families rely on calling police and paramedics who may not be properly equipped to manage an individual with ASD in a behavioral crisis. Once in the hospital, there are incredibly limited options in terms of facilities that can provide short-term intensive behavioral treatment, crisis residential stays, or in-home supports to families. In addition, there is a massive need for resources to support the psychosocial needs of families, as well as the siblings of individuals with ASD. Finally, there is a grave need for meaningful, long-term residential placements for individuals with intensive support needs in which individuals can learn new skills into adulthood. Through these types of services, all individuals with ASD, including those with the most intensive needs, can achieve a high quality of life. Themes Addressed: Caregivers, Housing and Employment
Alicia Munson, The Arc Minnesota Person-centered, self-directed services and supports have not been priorities for funding. The bulk of research and service reform has been done “to” or “on behalf of” Autistic people, and the needs and desires of other stakeholders have been prioritized over theirs. Autistic people -especially BIPOC- must be in all aspects of research, service development and reform. They must be in leadership and decision making roles - not just subjects of research. Their lived experience is critical in building awareness about and developing supports that address disparities, stigma, and isolation. We encourage the IACC to: Research disparate access to supports from birth to end-of-life. Prioritize preventative supports, such as mental health services. 71% of Autistic children ages 10-14 have one or more mental health disabilities, and Autistic people are more likely to have depression or anxiety than people who are not Autistic. High rates of anxiety, depression, and suicidal ideation are due to traumas of navigating ableism in society (masking). Promote funding for trauma informed services that support sensory and communication needs. Violent behaviors express underlying distress. Those needs should be identified and addressed individually. We must meet underlying needs rather than try to manage “behavioral” signs of distress. Advocate for the end of Autism “interventions” that CAUSE distress and trauma, like: electro-shock behavioral charts “quiet hands” “whole-body listening” Themes Addressed: Inclusion, Mental Health
George Eichhorn, ChildServe A large gap is the support for the family so all members of a family understand the child’s condition, the implications to the family and their relationships, family life and parent’s working. Some of the current services do not support the families’ typical activities, such as working. Respite, for instance, has program restrictions that impact a parent’s ability to work and the family’s use of respite services. Families also have very limited options for appropriate childcare for their children. Childcare that provides before and after school, and during breaks, is a need. Family education on available services and how to access them is limited. Increasing that education to increase access at a younger age would maximize the quality of life for the child and family. Ensuring quality, evidence based practices are utilized in all settings – including public schools would be helpful. Care coordination between providers is essential, but is often not funded. This limits the effective use of care coordination and impacts quality of life. Transportation to help a child under 18 access all services is a challenging resource for families. Most transportation services require an adult in the vehicle (other than public school). This has a significant impact on families and their ability to maintain employment, therefore their quality of life is affected. Themes Addressed: Caregivers, Community, Education
Anonymous Support needed to maximize the quality of life for autistic people does not include trying to shape them into neurotypical people, but allowing them to participate in society as their authentically autistic selves. In education, schools need to be flexible to accommodate the needs of autistic students. For me, and I did not discover this until my school went virtual for the pandemic, I really struggle in face to face environments. If my school offered a virtual or hybrid environment, that would be a better way of accommodating my needs. In the workforce, employers need to understand that autistic individuals have unique skill sets, and in order to harness the benefits, employers need to offer accommodations to autistic employees. Themes Addressed: Community, Education, Housing and Employment
Dr. Andy Shih, Autism Speaks An increase in community-based support for on-going care coordination for autistic individuals is needed to help enhance access to appropriate care, supports, and services, especially on the more extreme ends of the spectrum. Mental health services, transition support for individuals where higher education or employment are not options, interventions that help manage difficult and disruptive behaviors across the lifespan, and aging-related health and social needs are some examples of priorities where more investment is needed. Researchers over the past decade have identified many effective models in improving functioning, education, vocational, and health outcomes. These models represent a product developed in the context of research innovation. Investments need to be directed to strategies for scaling these innovations across context and regions. Finally, more efforts are needed to co-create and implement interventions and services with full participation and support from autistic individuals and their families. Funding needs to be allocated to develop organizational capacities in community-based organizations (CBOs) to enhance their capacities in implementation of innovations. Themes Addressed: Community, Inclusion, Mental Health
Kim Musheno, Autism Society of America The issues and concerns of those with the greatest levels of need, DSM-5 Level 3 individual and families, should be given far greater attention. In the last 15 years we have seen the valuable contributions being made by autistic self-advocates. These contributions help increase awareness of workplace accommodations, inclusion, the need for mental health support, and provide countless other benefits. However, giving too much attention, perhaps to those with less need for support but with strong communication skills may result in a deemphasis on the needs of those with severe autism. We are also mindful of the potential for members of the self-advocate community, largely made up of persons with autism with less need for support, to at times claim to be representing the entire spectrum of the autism community when they may more accurately be representing the concerns of those, like themselves, with lesser need for support. This can then result in a marginalization of those with severe autism and the voices of their parents or caregivers. Some advocate for a separate DSM category severe autism. While we are not proposing a change to the DSM at this time, the Autism Society seeks to represent the needs of the full spectrum of persons with autism and those who care for them and in that spirit urge greater attention by IACC to this important segment of the autism population. Autism CARES Act authorized development of evidence-based services and supports; however, there are still unacceptable waiting lists for services once a child is diagnosed. We need to understand why these behavioral and physical evidence-based interventions are not more widely available. We must develop standards that clinicians and medical doctors use when they serve people with autism. Medical professionals are often not trained to serve children and adults. Once individuals are diagnosed, medical providers fail to screen and diagnose other co-occurring conditions. This results in the lack of appropriate and timely mental health treatments. There has been a lot of momentum and energy focused on employment, however that hasn’t necessarily translated into an evidence base of employment strategies that work for people across the spectrum. More research needs to be done that demonstrates how effective practices can better serve people with severe ASD and how to rapidly scale those services across the country. Furthermore, recommendations should be developed that address policy barriers that disincentivize work for people with ASD who rely on Social Security and Medicaid. Themes Addressed: Accessibility, High Support Needs, Housing and Employment
National Council on Severe Autism, National Council on Severe Autism For adults with severe autism, challenging behaviors and functional incapacity often results in low quality of life, immense financial costs, isolation and lack of access to programs, housing, community and work. It is imperative that autism research prioritize identifying the following: • Ways to improve behavioral therapies that assist children and adults in developing daily living skills and reducing dangerous behaviors • Ways to improve access to public and private health insurance for behavioral supports and healthcare for adults • Ways to improve access to crisis care, both inpatient and outpatient • Ways to develop a medical field capable of serving the rapidly growing population of adults with severe autism The IACC should also prioritize establishing best practice guidelines, particularly for providers of residential and day services for individuals with low verbal/cognition. This should include assessments of preferences in all areas of daily living including activities for meaningful engagement, food, sedentary or active lifestyle, and infusion of choice, competency, and control over their own lives. Themes Addressed: Accessibility, Community, High Support Needs
Sonja Miller, Parent Service continuation for those who have severe behaviors, who will never be able to work or live independently. No more waiting lists. More funding to day programs, so they can serve the individual who needs 1:1. More funding for more day programs and host and group homes to be started. Education on how to accomplish those goals Themes Addressed: Accessibility, High Support Needs, Housing and Employment
Elizabeth Duffy, MS-OTR/L, Minnesota Neurodivergent Education Advocacy and Therapy Services Again, strengths based and relationship based services are most effective, and funding should focus on training professionals to use these approaches, as well as for future research. Funding should also go towards supporting mentorship programs for Autistic Advocates to provide mentorship and support to other autistic people. Greater funding for marginalized groups within the Autistic community is also vital. Funding for greater services and supports that are neurodiversity affirming across the lifespan is vital to the well being, as it allows for engagement in the authentic lives of their choosing. Often, it is challenging to find meaningful supports beyond childhood. Again, Autistic Advocates must have a central role when developing programs and supports. Themes Addressed: Acceptance, Inclusion
Anonymous Increased funding and resources for home- and community-based services!!! Increased access to AAC!! Increased access to appropriate and effective medical care Increased access to jobs Themes Addressed: Accessibility, Community, Housing and Employment
Gina Stango Toward that goal, states such as ours, Pennsylvania, need to stop using any parent-led models for early intervention - it’s garbage and you’re wasting critical brain development time and putting additional stress and pressure on parents. This is why we have trained professionals! My daughter had one speech therapist assigned to her who made me do everything for the interventions, including creating the treatment plans and treatment goals for subsequent appointments. When I asked her what her speech therapy goals were for my daughter, she replied condescendingly, “Oh, I’ll never interact directly with Pia. This is a parent-led model. Maybe you don’t understand how this works.” I replied that I understand it very well and I also understand that it doesn’t work for us and that I’m willing to bet that it doesn’t work for most families. And then I requested a different speech therapist and fortunately got one who did speech therapy directly with my daughter. Of course parents want to be involved and understand how to support our children’s development. The trained professionals need to lead those interventions. Also, the behavior professionals seem to get a message at some point in their training that parents are the enemy and are at fault for our children's challenges. This is harmful and antithetical to a team approach to treating our children. Lastly, all parent-led early intervention models need to stop now. Some professionals use that as an excuse to make parents do all of the work; again, wasting critical brain development time. The time after diagnosis is a challenging time of navigating services; the professionals providing early intervention services need to provide those services directly with our children, not teach us how to be pseudo-OTs/speech therapists, etc. It creates even more stress for parents. The current system is not working for children with ASD or their families. The contractor system needs to stop. It has created unsustainable working conditions for the clinical providers and high turnover, which negatively affects the children and their families. Particularly for those of us whose kids elope, we need safe places to be able to take our children and be able to get some relief ourselves. Again, year-round school needs to be available to our kids and we need more programming and respite for out-of-school time, especially weekends. We need to start with providing higher quality public education for our children with ASD so that they can more successfully pursue workforce development and higher education. The bar is still set too low for many of our kids. They are capable of so much more. Themes Addressed: Caregivers, Education
Anonymous Services and support for adult autistic people are severely needed. There is plenty of support for children, but as soon as they turn 18 there is almost nothing. Also teachers and schools need to be educated more and better about what autism is and what it isn't, so autistic children in schools will be treated better by their teachers and peers. Themes Addressed: Acceptance, Adults
Adrienne Benjamin There are simply not enough opportunities for those with Level 3 Autism. Not enough day services, not enough employment opportunities, not enough diversity of residential options. The recent moves to eliminate sub-minimum wage will obviously benefit some high functioning people...and yet, it will totally eliminate opportunities for people with more challenges. It's actually discrimination against those who can only work with supports and who enjoy their job, even if their pay reflects that they cannot be as productive as many others. In addition, eliminating funding for congregate living opportunities is also discriminating against those who have too many behavioral challenges to live safely in the community. Some would prefer and thrive in a larger, campus like setting that is not right next door to ""typical"" neighbors. Why take that choice away? Themes Addressed: High Support Needs, Housing and Employment
Anonymous 1) Service access is gated by a severe shortage of diagnosticians, outdated diagnostic criteria, sexism, racism, and ageism. 2) Other aspects of health care policy and care delivery are unintentionally harmful to autistic people or difficult for autistic people to access, even when they are for health services not directly related to autism. 3) Educational and workplace accomodations rely on an autistic person being able to prove that they are ""severely autistic"" - difficult when access to diagnosis is nearly nonexistent. The process for requesting accomodations is itself inaccessible. 4) Most care workers an autistic person encounters are poorly educated about autism and hold outdated, incorrect, and harmful beliefs about autistic people. 5) There are virtually no services for autistic adults provided outside of live-in mental health institutions, and institutional settings are usually harmful to autistic people. 6) Most services on focus the priorities and the voices of everyone BUT the autistic person. An autistic person's consent may not be required, even if the person is an adult. Themes Addressed: Acceptance, Accessibility, Inclusion, Inclusion
Elise Aguilar, American Network of Community Options and Resources ANCOR appreciates the IACC’s commitment to supporting services to maximize the quality of life for individuals with autism. The IACC must ensure its strategic plan includes support for systems of care that incorporate a full spectrum of individualized and specialized supports and services. Specifically, the strategic plan must provide support for strengthening and expanding the Medicaid Home and Community Based Services (HCBS) program. As the IACC has previously recognized, the Medicaid HCBS program is integral in improving the lives of people with autism and decreasing unmet needs. The HCBS program supports community integration and addresses the specific needs of each individual with person-centered planning. HCBS providers ensure individuals receive the services and supports that are important for each person, such as career-readiness programs and transition programs to bridge the gap from child to adult services. The HCBS program furthers self-determination, independence, and empowerment of people with autism in their homes and in the community. However, waitlists for community-based service programs for individuals with I/DD stand at approximately 800,000 across the country. The IACC must recommend and support access to HCBS for all eligible individuals. Themes Addressed: Accessibility, Community
Jacqueline Ward Early intervention in a community setting is essential! Also the change in workplace acceptance of autistic individuals is critical. So many autistic individuals ""get through"" high school and even college, and then they can't get or keep a job. Themes Addressed: Community, Housing and Employment
Michael J. Borr, Chair, Advocates for Autism of Massachusetts AFAM endorses Obj. 1-3 of the 2016/17 Strategic Plan to (i) scale up evidence-based interventions in community settings, (ii) reduce disparities in access and outcomes for underserved populations, and (iii) improve service models to ensure consistency of care across many domains. Work must continue to ensure that all people with autism have access to affordable, quality healthcare to ensure better outcomes. Interventions should cover the lifespan with access for all, no matter the public or private payer, to behavioral care (e.g., ABA), habilitative therapies (e.g., occupational, physical, and speech), and other necessary care (e.g., psychological, psychiatric, pharmacy, vision, and dental). Training specific to autism of practitioners in all settings is critical to quality of services. Support services, including HCBS, addressing challenges faced by individuals with autism and their families in their daily lives (in education, employment, housing, leisure, and transportation) must be enhanced and made accessible to all in need of these services, including underserved populations. Staff must have appropriate training for interactions with and care of individuals with autism, particularly related to challenging behaviors, safety, sensory needs, and augmentative and alternative communication. Resources and practices that keep people with autism safe in the community should be enhanced, including protections related to wandering or bolting, and interactions with law enforcement. Themes Addressed: Accessibility, Community
Anonymous Individuals with Autism Spectrum Disorder (ASD) benefit from a variety of services. These may include speech therapy, occupational therapy, physical therapy, behavioral therapy, social skills training, parent management training, parent directed treatment programs, personal care services, special education, mental health services and counseling, transportation, job training, legal assistance, recreational programs and many more. These services give opportunities for individuals with ASD to better participate in everyday activities, socialize, and gain skills to be more independent. In addition to direct interventions for individuals with ASD, there are also various community and family supports. Families may need assistance in ensuring that their basic needs are met. This includes rent assistance, utility assistance, food assistance, financial support and more. Families and caregiver also may need counseling services, mental health services, medical care, support groups, trainings, or language translation services to help them access care for themselves or their family member with ASD. Overall, we can reduce stigma, decrease stress in caregivers and families, and increase access to service and address gaps in services by engaging support from the community and ensuring that community providers are educated on the needs of individuals with ASD. Even with all the above listed, more is needed to ensure that individuals with ASD can reach their fullest potential. Themes Addressed: Caregivers, Community
American Academy of Pediatrics The AAP recommends the following services and supports to maximize quality of life for people on the autism spectrum: Integrating behavioral health services into primary care so that individuals can benefit from a true medical home, where prevention, screening, and treatment of behavioral and mental health issues can be addressed before an individual is in crisis mode. Thoughtful planning from a young age regarding later-life independence. Improved case management and care coordination services. Providing support groups for individuals with ASD, their caregivers, and loved ones. Adapting physical education programs for individuals with ASD to participate in, within the context of a social group-setting, throughout the lifespan. Increasing involvement of people with ASD in the development of quality-of-life measures. Reforming Insurance coverage to allow ease of access to medically necessary interventions. Encouraging self- or family-driven goal development to guide self-determination and foster a positive, strengths-based autism life course plan. Themes Addressed: Accessibility, Adults, Caregivers, Community, Inclusion
oldladywithautism, autistic elder Services needed will vary with individual struggles. Parents and caretakers will need support and respite and as children age, better housing and support, better trained workers and support personnel will be needed. This is true for adults ageing into care homes and other organized systems, as autism presents challenges to the inflexible routines and group activities of so many nursing establishments. Many autistic individuals will find it impossible to adapt due to sensory processing struggles which cause so many of these activities and routines to be distressing to painful to experience. Such individuals need to be identified and assisted instead of drugged and made insensible to so many routines when accommodations could be made and routines adjusted. Themes Addressed: Accessibility, Adults, Caregivers, Community

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