Request for Public Comments on Co-Occurring Conditions in Autism

Responses to Question 4

Question: What additional research is needed to help address co-occurring conditions for autistic people?

Name	A.S.
Demographic	Autistic individual; Family member of an autistic individual
Response	Just acknowleging it exists and making the distinction between co-occuring and something inherently part of autism is important for dispelling myths and information (like people thinking if someone stops eating gluten their autism will magically go away). Some people think autism and ADHD are the same thing, some people think they're two distinct conditions that can occur in one person at the same time. Also approaching research from a compassionate and humanistic space instead of treating us like your little lab monkeys and like we're just a "research subject" would be the bare minimum. Switch to respectful and affirming, non-pathologizing language for starters. Pay autistic people to participate in studies and pay them handsomely. Don't collect DNA samples because the human rights violations implication of doing that is enormous. Basically don't be unethical eugenicists and don't see researching us as instant dollar signs. We are human beings, treat us as such.
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Name	Aaron
Demographic	Autistic individual
Response	More research on undiagnosed adults would help. Just anything that can be found to make our lives easier or a better way to understand ourselves and our place in the world would help.
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Name	Abby Schindler, Institute on Disability and Human Development
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response
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Name	Abi
Demographic	Autistic individual; Family member of an autistic individual
Response	I think our development needs to be researched more. There is something different about the way we develop that causes these co-occuring conditions.
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Name	Abi Lea
Demographic	Autistic individual
Response	More research into HEDS and HSD, there is very little research on these conditions and therefore very little therapies or treatments available. More research into mental health conditions and how they impact autistic people.
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Name	abirami duraiswamy
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Since the diagnosis of autism is increasing every year, we have to find the cause and also identify parents/mothers who are at risk. We also need cultural competent interventions. The behavioral interventions rarely help and are very difficult to access. Policies to help promote mother, parents and family functionality is the key to improve outcomes for the NDD individuals.
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Name	Adam
Demographic	Autistic individual
Response	we need to start by studying females and and continue the studying into adults. A lot of research and effort is put in the children. I grew up in a family that did not believe in mental illness so I was not able to seek help until late in my 20s and it was extremely difficult to find. a lot of the therapist that I have tried to see for the research I’ve done are uneducated on the subject.
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Name	Adam Wehn
Demographic	Autistic individual
Response	I don't feel additional research is needed, what I do feel is needed is more support options being made available to the neurodivergent community. Especially in the form of housing options of a communal nature, either small communities where each individual has their own living space with a communal space for them to choose to socialize with others. Or a home setting where each individual has their own space to sleep in and retreat to if the stimulation of the world becomes too much for them.
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Name	Adriene Fern
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Your panel asks how autism services could be improved to better address co-occurring conditions in this population. It must include changes and training to the social security phone and direct customer support staff. Social Security's inability to efficiently process and assist their most vulnerable consumers with consistent and knowledgeable information is deplorable. The maze of paperwork and lack of county/state sharing information creates a maze of misinformation, leaving many without funds. In April 2023, I contacted Congressman Jared Moskowitz's office for HELP! My son with autism had his benefits rescinded in February 2023. With his office's intervention, he was reinstated in July 2023. What will it take for the Social Security Administration to be able to talk to the other sub-departments of Social Security? We live in the 21st century with computers, email, and advanced technology, yet Social Security cannot streamline from one department to another. How many requests did your office and colleagues have to interfere with on behalf of your constituent's Social Security matters? Reform is required; we must do better for our most vulnerable. A broken system is no longer acceptable. Thank you for your consideration in this critical matter.
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Name	Adrienne Benjamin , Parent/Gaurdian
Demographic	Family member of an autistic individual
Response	Great question. First, there still is no answer to explain why there has been and still is a massive increase in the number of children with Autism over the last 25 yr or so. That's important. Very important to study. And, usually, people with severe types of Autism are excluded from research. Yet, it is those with Level 3 Autism who seem to have the most co-occuring conditions. Research that too.
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Name	Advocates of Autism of Massachusetts
Demographic	Representative of advocacy organization
Response	Notwithstanding research into the causes and characteristics of autism over the past several decades, investigations of the manifestations of autism, co-occurring conditions and effective interventions has barely begun. This research is particularly limited for those with profound or severe autism. Much of the research undertaken to date excludes participants who are nonverbal or those who cannot tolerate the conditions, procedures and environments involved in the studies. An important focus of research going forward should be on better understanding and addressing severe behaviors such as aggression, self-injury, pica, and elopement, and identifying more effective treatments (medical and behavioral). Much more research is needed on psychiatric medications and other therapies. Given the characteristics of autism in many people (sensory issues, communication challenges, etc), research is necessary to develop technologies, instruments, and techniques to allow people with autism to better access primary care and preventative screenings, as well improve the diagnosis and treatment of chronic and serious co-occurring conditions.
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Name	Aidan
Demographic	Autistic individual; Family member of an autistic individual
Response	More research needs to be done in the effects of autism on women, people of color, various socioeconomic classes, and lgbtq+ individuals, as the majority of research and the most commonly used diagnostic tools were only tested on cisgender, white men and boys. New diagnosis tools would be amazing.bIt would also be useful to find the best ways for parents to raise children with autism without causing additional trauma and mental health disorders simply through not having the knowledge.
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Name	Aimee Doyle, Autism Mom/Disability Attorney
Demographic	Family member of an autistic individual
Response	We need additional research on the co-morbidities that affect individuals with autism - both the physical co-morbidities and the mental co-morbidities. I think there should also be research into what causes they co-morbidities, and what causes autism, since it is always easier to treat something if one knows what causes it.
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Name	Aimee Mingone, Teacher
Demographic	Autistic individual; Service provider, health provider, or educator
Response	More public acknowledgement of autistic voices
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Name	Akash Dey, ASD level 1
Demographic	Autistic individual
Response	I think a study where you have adults with autism who have jobs write a daily or weekly report in their schedule and challenges they faced regularly as to when changes happened would be good. As well as how well their coworkers and workplace understood and supported them.
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Name	Alan Owen
Demographic	Autistic individual
Response	More studies of autistic brains in detail. One study I saw showed that the amygdala is enlarged in infancy in autistic people, and that it could be responsible for increased sensory issues and emotional disregulation. This information, combined with the negative effect of cortisol on the hippocampus, led me to realize that interacting with people damages my brain. This was information that I myself had to piece together. Research showing the why of autistic issues, explained in a neuroscientific way, would do wonders.
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Name	Alessandra Stark
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Additional research is needed on how to better treat anxiety when it comes to potty training and other tasks that are related to hygiene. Also there needs to be additional research on how to treat different eating disorders and sensory processing disorders that are involved in this
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Name	Alex
Demographic	Autistic individual
Response	Research on the impact lack of sleep has on an autistic individuals daily life.
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Name	Alex
Demographic	Autistic individual
Response	More Autism run studies. A recent study at Harvard found Autistic people especially those with high pattern recognition are more accurately diagnosing themselves than doctors. This comes from a fundamental misunderstanding of the neurodivergency that textbooks and studies are overlooking based on outdated information from dangerous medical ideals similar to ABA or Conversion therapy. Research also needs to focus more on how socialization affects those with autism as it prevents vastly different in feminine raised people who as a whole are almost always late diagnosed if they get a diagnosis because the diagnostics are based on young boys only.
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Name	Alex
Demographic	Autistic individual
Response	We need AUTISTIC led research to examine the connections/causations/correlations of autism and its comorbidities. We DO NOT WANT AUTISM SPEAKS to have any involvement in this process due to their intense stigmatization of autism. If we understand the methods by which autism causes distress, we may yield therapeutic treatments for sensory issues, shutdowns, meltdowns, and more. If we can diminish the more destructive elements, the creativity, joy, and diversity of thought that autism can bring can take center stage.
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Name	Alex Curtis
Demographic	Autistic individual
Response	I think the additional research needed to help address co-occuring conditions for autistic people is not just bringing awareness but acceptance of autism. Please research more into biological women (AFAB) with autism because it makes it very hard to get a diagnosis. Also, into other mental health conditions/disorders and how they can come from or relate with autism.
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Name	Alexandra Carlson
Demographic	Autistic individual
Response	In my case, it's all about recognizing autism as separate from the co-occurring conditions. And that the solutions to problems need to take into account the autism as the standard solutions may be wrong or incomplete.
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Name	Alexandra Hathaway
Demographic	Autistic individual; Family member of an autistic individual
Response	Understanding why autism Co occurs with certain conditions
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Name	Alexandra Hayman
Demographic	Autistic individual
Response	Research the prevalence of autism and Ehlers Danlos syndrome/HEDS, POTS, in autistic people, study more women and girls so that future generations can get identified younger than I did.
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Name	Alexie Herrmann
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More research into connective tissues disorders, the cause of connection between autism and epilepsy, therapies that aren't ABA that are helpful, what educational strategies are effective.
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Name	Alia Campagnone
Demographic	Autistic individual
Response	Research needs to be done on treatments& cures to help manage these co occurring conditions. Vascular compressions need significant research.
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Name	Alicia Whaling
Demographic	Autistic individual; Family member of an autistic individual
Response	Study all ages, all genders, actually use a spectrum instead of a line to measure, research masking
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Name	Allison Barcott, Parent
Demographic	Family member of an autistic individual
Response	We need more research on what WORKS for those with ASD, not just what we can adapt for them. (Both in meds and psychology) We need to train all behavioral health clinicians in everything about ASD!!! From diagnosis to therapy, there seems to be a massive lack of understanding in the field of what researchers have learned about ASD in the last 20 years. I recently read a bit of research done on how clinicians felt regarding treating those with autism, and it all came down to how much training they had had on ASD. More research in this area will help clinicians understand how important that training is. We are sick of being told we are helicopter parents and need to tough it out when what needs to happen is that they need to learn how to slow down, be explicit, precise, and earn patient's trust. Without proper training, they should not be working with neurodiverse patients. We need research to show the lack of availability of specialized behavioral health care for those with ASD. Thus far, I have yet to find an IOP or PHP appropriate for the neurodiverse community. My husband and I live in fear of the day that we are forced to take our son to the emergency room for psychological evaluation--we've seen all too well how wrong it usually goes for anyone who is not neurotypical.
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Name	Allissa
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Allyson P., Autistic Adult
Demographic	Autistic individual
Response	Research to find out more about how ASD is connected to other mental health disorders, but especially ADHD and OCD; and to find out how it relates to eating problems such as ARFID.
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Name	Alycia Halladay, Autism Science Foundation/Alliance for the Genetic Etiologies of Neurodevelopmental Disorders and Autism
Demographic	Researcher; Representative of advocacy organization
Response	● Studies that address a direct link, not indirect assumptions, about the mechanisms of co-occurring conditions linked to autism. ● Genes are not just in the brain they are all over the body. Better understanding of genetic underpinnings may lead to interventions that target body parts other than the brain. ● Genetic findings could lead to preventative medications or direction on the right behavioral interventions. ● Gene therapy to treat comorbid conditions are necessary. ● Important to include patient-reported outcomes rather than just traditional outcomes. ● It is also important to explore the mechanisms of co-occurring conditions whether a genetic lesion can be identified. There is insufficient funding and no coordination across NIH institutes to advance ASD GI research, sleep research, or even epilepsy research. This is where we really see the unintended consequences of silos of expertise by the institutes. It would be transformative if there were trans-NIH initiatives that could bring together, say NIDDK, NIMH, NINDS, and NICHD to advance GI research in ASD.
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Name	Alyssa J. Pearson, New Mexico Department of Agriculture
Demographic	Autistic individual
Response	Research needs to be done showing that teleworking/working from home is a valid disability accommodation for people with autism to improve their job outcomes and employment satisfaction instead of being perceived as an attempt to goldbrick.
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Name	Alyssa Stephenson
Demographic	Autistic individual; Family member of an autistic individual
Response	Research how various mental disorders effect autistic people differently than non autistic people
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Name	Amanda
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More research is needed on PDA, how it prsents, how to assess, and how to support. Additionally, more research needs to occur on hard-to-spot autism, as well as how autism presents in girls.
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Name	Amanda
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I know I personally would have benefited from more research into the emotional depth of autistic people, as I believe the stereotypes often frame us as cold/without empathy when I have found this very untrue in my professional work as well as with myself and family members on the spectrum. I think understanding how it is linked with physical issues (hypermobility, POTS, GI problems) as well as the impact of "masking" would be very beneficial.
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Name	Amanda Halloran
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization; Other
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Name	Amanda Kulesza
Demographic	Autistic individual
Response	Autism in women/girls
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Name	Amanda McCray, Autistic mom raising autistic kids
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	The neuroscience behind it. What is different in neurotypicals and neurodivergents? What is caused by the trauma society creates, ie depression and anxiety verses what is caused by different neuropathways like sensory processing disorder and pathological demand avoidance.
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Name	Amanda Saffell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Consider the possibility that some conditions are not co morbid but rather the symptom of society. Also research the impact of society on autism and how our role would be more significant in a society that encourages differences instead of belittles them. Research how the end of war, increased healthcare, removal of excessive wealth would impact autism. I’d bet there would be significant data that shows autistic people thrive in a peaceful society with community based environments.
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Name	Amber Robertson
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I think it would be beneficial to look at the paradoxical reactions a lot of autistic people have with medications. For instance, I was put on a stimulant to help me stay awake during the day, and it only makes me more exhausted. Certain antidepressants do the opposite for me and make me less functional, more depressed, and more suicidal. It would be helpful to know why that's happening and if it's possible to avoid those medications without having to try them first.
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Name	Ambree
Demographic	Autistic individual; Family member of an autistic individual
Response	Possible causes and solution to the juxtaposition of having cooccuring disabilities
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Name	Amelia
Demographic	Autistic individual
Response	A lot. There is a massive connection for autism and trauma and it seems like no one knows which one comes first. For the majority of my 10+ years in therapy, I was treated with ABA therapy which is the equivalent of telling someone to "just do it", even if it makes them sad, makes them feel like they're lying to everyone, makes them tired, or makes them want to kill themselves. If you're honest about it making you feel bad, you're given more medicine to make you not kill yourself but then you're just an emotionless robot, fulfilling their capitalist duty to earn money and not complain. It's soul sucking.
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Name	Amelia Cruz
Demographic	Autistic individual
Response	Funding needs to be reallocated away from searches for a cure/cause of autism to studies on how it presents in underrepresented groups. Also, research into new ways for autists to communicate with each other as well as with allists. There is a lot of time and money spent trying to find ways to force autists into communicating as allistically as possible. I believe this is a grave error. We do not need to train the autism out of autists. There is much to be learned from autistic people about the nature of language, speech, communication, and semantics. Instead of researching ways to "fix" us (with a cure, phony vitamin supplements, and/or Applied Behavior Analysis 'therapy', etc.), let's work together to find out more about autism as a valid way of life, so we can ease some of its more disabling aspects. More funding can also go into how allists perceive and respond to autists. The research lens is more often than not trained on the autistic child, and not on those holding the lens. How much of autism's disabling effect is a result of allistic people's treatment of us? Not all, of course, but I believe it's worth looking into. Finally, more attention should be paid to autistic adults. Despite popular belief, autistic children do in fact grow up to become autistic adults (if we're lucky).
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Name	American Academy of Pediatrics, American Academy of Pediatrics
Demographic	Representative of advocacy organization
Response	A clearer understanding of the real-world frequency and fluctuation of symptoms on a patient level is needed to obtain a more practical data set for clinicians to see patterns of behavior/symptoms associated with various co-occurring conditions. Most of the existing research is in “controlled” or non-real-life structures and is often too far delayed from the patient’s real experiences. Improved data collection processes including innovative tools like sleep tracking, urine/stool output, heart rate, and other forms of at home monitoring would significantly improve the ability to conduct research. Research on depression and suicide risk among autistic youth and adults, including causes and incidence, would help to address some co-occurring mental health conditions. Additionally, research on ways to prevent wandering, which is exacerbated by co-occurring mental health conditions, would be beneficial in reducing dangerous situations and outcomes such as drowning. Regarding development, further research on puberty in autistic youth, and reproductive health, would help determine the best treatment and prevention practices to address the increase in mental health conditions during and after puberty, specifically related to medications. Similarly, further research into effective behavioral strategies and/or medications to improve anxiety, aggression, self-injurious behavior, and obesity/metabolic syndrome would help address co-occurring conditions for autistic people as well.
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Name	American Association of Psychiatric Pharmcists, American Association of Psychiatric Pharmacists (AAPP)
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	Research addressing co-occurring conditions in this population is minimal. Major pediatric clinical trials have clear exclusion criteria of ASD diagnosis. The wide spectrum and degree of clinical manifestations makes this population challenging to study and generalize treatment for. This has led researchers to exclude certain levels of functioning or co-occurring conditions from clinical trials and introduce study biases. A meta-analysis of >300 studies pertinent to ASD found only 2% of participants to be nonverbal or minimally verbal, while the real-world population estimates 25-30% (PMID: 30867896). There are currently only 2 FDA-approved medications to treat co-occurring conditions specific to ASD (irritability; risperidone and aripiprazole). This means that medications are often used off-label in this population, increasing risk for inappropriate polypharmacy, lack of symptom-based prescribing, and overprescribing. Utilization of available resources such as BCPPs to conduct research in this area critical, as BCPPs are skilled in clinical trial evaluation and coordination.
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Name	Amy
Demographic	Autistic individual; Family member of an autistic individual
Response	Research focused on the voices of Autistic individuals and NOT the perspective of those administratoring the Research
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Name	Amy Acevedo, Mother
Demographic	Family member of an autistic individual
Response	public school involvement, resources, and diagnosis recognition
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Name	Amy Cox
Demographic	Autistic individual
Response	Much more research needs to be done on people like me, who weren't diagnosed until age 61ans were misdiagnosed and mistreated for decades with harmful drugs, and have absolutely no way of accessing any sort of meaningful help. 99% of services are for children. It would be a good idea to ask autistic people what they need. And finding out why so few physicians know anything about autism and related concerns.
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Name	Amy Fowler
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I think instead of research caregivers need a menu of supports and services
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Name	Ana Pereira, Mother of an amazing autistic boy
Demographic	Family member of an autistic individual
Response	There should be more parental outreach and information. almost like a autism 101 guide for parents of newly diagnosed children.
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Name	Ananya Rishi
Demographic	Autistic individual; Service provider, health provider, or educator
Response	- Accommodating to needs without segregating. - How to respond to difficulties being faced at school/work. - Benefit of diagnosing comorbid conditions alongside autism diagnosis. - Healthcare courses for doctors to understand and address comorbid conditions when they know patient is autistic.
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Name	Andie
Demographic	Autistic individual
Response
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Name	Andrea Barlass
Demographic	Service provider, health provider, or educator
Response	Better screening measures and assessments, increased education for parents and care professionals, increased training for mental health professionals who work with this population, and more availability for testing to clarify diagnosis.
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Name	Andrea Dahlberg
Demographic	Family member of an autistic individual
Response	More research within families, families have more insight and direct knowledge. They live with autism and the affects 24-7. The educational system needs more training and resources. Try researching where our children end up and ask yourself why? We need less research and more action. My child goes to a school for children with autism and I fight everyday to understand why they don’t do more to help my child socialize within the community and/or as a typical child would. Everything is left up to the parents and if you’re not an educated parent, then quite frankly you’re screwed. Research why my child cannot hear or read the word quiet, see the gesture that represents that word, or listen to the sound “shhhh”. Then find someone that will help me with that. That would be nice.
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Name	Andrea Davis, Ph.D., DIR/Floortime Coalition of California
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
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Name	Andrea Hammond
Demographic	Autistic individual
Response	More research needs to be done with autistic adults of all genders and races. It is hard to find resources as an adult, but especially for women and people of color.
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Name	Andrea Webber, Mom
Demographic	Family member of an autistic individual
Response	It should be individualized based on the case. As Dr Steven Shore said "If you've met one person with autism, you've met one person with autism.” The legal system with ASD people.
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Name	Andrew James Sanchez , Social Optics
Demographic	Autistic individual
Response	One on one interviews, preferably paid research speaking to autistic people about their understanding of the following concepts within themselves. Age and how age is perceived. Their struggles, autistic people need to be asked "what are the things you have difficulty achieving?" Many of us will answer things like "gainful employment tell her to our specific and extremely challenging condition, housing that is affordable for someone on an autistic income which is usually below the poverty line, in an understanding of food sensitivities in society. One-on-one research is vital because each autistic person and the physical and mental toll on their body is completely different. You're welcome to contact me as an advocate.
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Name	Andrew, Spouse of person with autism
Demographic	Family member of an autistic individual
Response	Finding earlier symptoms of autism in women, rather than being mistaken for symptoms of bipolar or borderline personality disorder.
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Name	Andy
Demographic	Autistic individual; Family member of an autistic individual
Response	Oh honey, We've only studied Autism about as much as we've studied the 7 oceans. The first "studies" done on Autism only included young, white, male participants which is obviously incredibly biased. Fun Fact: the "evaluations" that Hans Asperger performed on Autistic children were actually just a test to see if (in his imbecilic opinion) the children were "functional" enough for society. Oh, and if Hans didn't deem them "functional enough," then they were sent to a nazi "asylum" where many of them were starved and/or abused until they died. So, all the research needs to be done! Considering the fact that earlier "treatments" for Autism included electrically shocking the patient, I'd say we need to take a VERY different approach to researching Autism (and it's co-occurring conditions) in the future.
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Name	Andy Shih, Autism Speaks
Demographic	Representative of advocacy organization
Response	Addressing co-occurring conditions in autism requires research focused on the real-world effectiveness of interventions outside of controlled laboratory settings. Research should also prioritize understanding the social determinants of health, quality-of-life indicators, and predictors of community integration to better inform community-based support strategies. Research on co-occurring conditions like anxiety, ADHD, catatonia, and irritability is also needed, as well as research into validated treatments for these conditions and methods for disseminating these best practices to community providers who feel ill-equipped to treat individuals with ASD. Aging-related research is crucial for understanding the evolving needs of autistic individuals over time. Finally, there is a pressing need for research on behavioral interventions tailored for adults with autism. All this research needs to be codesigned alongside autistic people and their families and prioritize enrolling a sample of diverse populations.
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Name	Angela Close, Parent of adult with ASD
Demographic	Family member of an autistic individual
Response	We need to research what the physical health implications are for ASD. Are gyms and fitness centers ASD friendly? Are their classes and programs. What educational and vocational teaching aides can we create for better learning.
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Name	Angela Hilbert
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research on the double-empathy problem and Monotropism Research on Diversity, Equity and Inclusion programs that work for making professional settings more accessable and safe for Autistic people.
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Name	Angela, Autism caused from brain damage at birth.
Demographic	Autistic individual
Response	More research is need on Communication and speech therapy for Autistic people.
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Name	Angeline Low, Apt Fitness, Inc.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	More awareness must be raised. People need to stop believing "everyone has a little autism." The condition needs awareness not desensitization. More research must be conducted on the links of autism and other conditions both mental and physical. Employers need to be more sensitive to the needs of autists as we are excellent employees when we are able to focus on performance.
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Name	Angie Gorz
Demographic	Autistic individual; Family member of an autistic individual
Response	What is needed is actual support, not research into cures. Autistic adults and families need support. People who don’t have multiple diagnoses need access to counseling, not constant denials.
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Name	Ann
Demographic	Autistic individual; Family member of an autistic individual
Response	Research how to support the Autistic community, especially in the areas of the medical industry, and law enforcement industry. These are the two industries that I struggle the most with.
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Name	Ann Glynn
Demographic	Family member of an autistic individual
Response	I would love to see more research on the sensory implications and how the mind is processing the world around the autistic individual. I feel if we could get a better understanding of how the individual was feeling in the world around them it would give us a better understanding of understanding what may be the root cause of some of the extreme behaviors that many of these individuals face on a day to day basis.
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Name	Ann Titus
Demographic	Family member of an autistic individual
Response	Not only are the mental health care system and schools failing autistic people, but society as a whole doesn't value neurodiversity more generally. So, how can non-autistic people do a better job at accepting those who are different into their lives, places of work, etc.? Also, what information is being given to parents who have just learned their child is autistic? Why is ABA the go-to therapy when so many adult autistic people report that it is abusive and traumatizing? How can mental health professionals who diagnose autism better serve parents, and provide more appropriate resources? Are some "early interventions" actually harmful, especially to PDA autistics? Why isn't PDA in the DSM?
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Name	Ann, Parent
Demographic	Family member of an autistic individual
Response	More emphasis on severe autism. Research on organic causes of speech apraxia. “Speech therapy” is ineffective.
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Name	Anne Cuvellier, MSW
Demographic	Service provider, health provider, or educator
Response	To have persons with Autism viewed as everyone else - a contributing member of society if they choose to do so. It is unfortunate to me that while schools are mandated to provide needed educational services, often at a significant cost, State Agencies that are SUPPOSED to provide adult services are not entitlements. By Departments of Developmental Services (in CT it is a 14 year wait for services under the Autism Waiver) lacking funding, resources, organization and programs, many persons who enter their post-graduate life are left with no services, inadequate services and forced to continue to live with their parents/family members as though they have no right to an adult life. I liken this practice of mandating services until 21 or 22 through the education system and dropping the entitlement for continued services at age 21 or 22 to teaching someone to read and then taking away their books. There is no way for a student moving into their young adult life to maintain and gain skills without MANDATED programming in adulthood and without being provided the dignity of adulthood by the opportunity of living independently from family. Lastly, the current system requires that those individuals who are living with their family and require care, continue to live with family despite the age of the caregivers, this too is inhumane for both the caregiver and the person with Autism.
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Name	Anne Marie Price
Demographic	Autistic individual
Response	RESEARCH AUTISTIC WOMEN.
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Name	Anne Nagel
Demographic	Autistic individual
Response
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Name	Annettr
Demographic	Family member of an autistic individual
Response
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Name	Anonymous, public schools
Demographic	Service provider, health provider, or educator
Response	Basic understanding of frequency of co-occuring conditions
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Name	Anthony
Demographic	Autistic individual
Response	I think that a better understanding of autistic burnout specifically will be beneficial for others who are high functioning like myself
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Name	Arianna C
Demographic	Autistic individual
Response	The link between connective tissue and autism, improving education for autistic and neurodivergent students, lgbt+ identities and autism, the digestive tracts of autistic people, autistic eyes and ears.
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Name	Ariel Taylor
Demographic	Family member of an autistic individual
Response	We need to start differentiating between autism and FASD. The most recent research shows that FASD happens at a much higher rate than autism but people with FASD are often diagnosed as autistic because of stigma/autism being more widely accepted
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Name	Arushie Nugapitiya
Demographic	Other
Response
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Name	Ash Keen
Demographic	Autistic individual
Response	Research links between autism and conditions like OCD, POTS, EDS, and migraines
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Name	Ashleigh
Demographic	Autistic individual
Response
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Name	Ashley
Demographic	Family member of an autistic individual
Response	A lot!!!! We need an understanding of the mental health needs of au people
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Name	Ashley Bayles, Autistic Person
Demographic	Autistic individual
Response	Research into the biases and behaviors of allistics when they are interacting or interfacing with autistics and how to mitigate/reduce the harm caused by allistics against autistics.
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Name	Ashley Daly
Demographic	Family member of an autistic individual
Response	If you’re autistic, what additional testing should be automatically considered. Public school knowledge on what else to test for and funding to do so. Schools will only test for what you argue and push for them to test for.
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Name	Audra Olazabal
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	I'd like to see more research on mental health and autism, on women who are autistic, on parents who are autistic, on gender identity and sexuality, on undiagnosed or self-diagnosed adults, on supports and services for autistic populations from teenagers through old age (i.e. beyond early intervention), on what service providers (medical staff, emergency responders, educators) are seeing, and needing, and how to best support and train them, on developmental/play based approaches, etc.
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Name	Audrey
Demographic	Autistic individual
Response
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Name	Aurora
Demographic	Autistic individual; Family member of an autistic individual
Response	The connection between personality disorders (especially but not limited to borderline and schizotypal), gender dysphoria, and dyslexia with autism needs to be explored.
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Name	Autism high functioning, with Heds
Demographic	Autistic individual
Response	I have HEDS, GI track issues, and possibly pots. I’ve been in constant pain since elementary possibly sooner. Numerous joint and muscle problems along with losing vision etc…
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Name	Autism New Jersey
Demographic	Representative of advocacy organization
Response	Additional research into the cause of increased co-occurring medical condition prevalence is needed. A study using a large sample size of SPARK data found that 74% of individuals with ASD had at least one comorbidity and had a greater average number of comorbidities than their non-ASD siblings (Khachadourian et al., 2023) which would suggest that something specific to an individual’s autism diagnosis is correlated with the presence of the co-occurring medical condition. Second, while many caregivers report atypical symptoms among their children, there is limited professional understanding of these idiosyncratic symptoms or their etiologies. Knowing more about the cause of and presentation of co-occurring medical conditions in individuals with autism can result directly in improved care and outcomes.
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Name	Autism Society of Idaho
Demographic	Family member of an autistic individual
Response
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Name	Autistic Adult and Autism Researcher
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Research is needed to better understand how eating challenges relate to co-occurring diagnoses and symptoms of ARFID and anorexia nervosa. Research should also examine how eating challenges develop and how treatments and supports can be developed and refined for autistic children and adults alike. Longitudinal studies are needed to understand how eating challenges change throughout the lifespan, as there is very little research in this area. As a result, it is unknown what the long-term impact of food selectivity is on autistic adults and adolescents. Additionally, there should be research into the potential role of gender and eating difficulties in autism, as autistic girls may be more prone to anorexia or food selectivity than autistic boys. Finally, research should explore the value and efficacy of food supports such as food delivery apps, personal care attendant to prepare food, etc to determine whether such services should be made more publicly and financially accessible to autistic adults.
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Name	Ava
Demographic	Autistic individual
Response	Studies on females specifically. Extra high rates of reproductive issues, hypermobility, brain issues (inflammation), overlap with adhd etc
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Name	Azure
Demographic	Autistic individual
Response	There is a tremendous lack of research for high support needs autistic people that addresses their own concerns about themselves and not the anxieties of allistic people.
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Name	B
Demographic	Autistic individual
Response	Research into groups beyond white males. You need other minorities, women, queer folk, all across the spectrum of society to understand these issue. Especially those diagnosed as adults because we didn't present with typical white male child symptoms.
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Name	B. Blair Braden, Arizona State University
Demographic	Researcher
Response	There is a huge need for large-scale clinical trial funding. Many of the NIH ICs will not fund autism efficacy trials. This is particularly problematic for adults as interventions tailored to adults is only a recently emerging field. Yet, the opportunities to fund research that can build evidence-based interventions for autistic adults is severely lacking.
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Name	Barbara Baker, parent
Demographic	Family member of an autistic individual
Response	I would like to see more research in the area of biomedical issues for people with autism. We seem to have good success when we treat her health issues -- this results in improved behavioral issues and better learning. I don't think a lot of practitioners believe it, but it just makes sense. Pushing heavy drugs on people with autism is not always the answer. Getting to the root of their behaviors needs to be better researched.
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Name	BAT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The relationship between autism and gender differences. The relationship between autism and Ehlers-Danlos Syndrome. ABA needs to be looked at without submitting more individuals to the torture. What are the long term affects of children being treated like dogs for hours every day? More research into neurodiversity affirming care and interventions. Clinicians need to find ways to help autistic folks navigate the world instead of trying to “fix” them. Autistic folks don’t want to be cured.
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Name	Beatrice Alvarez , Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Mental health help, talk therapy, social group therapy, social stories, social practices, behavioral therapy
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Name	Bella
Demographic	Autistic individual
Response	Just, talking to autistic people. There's different things that help all of us because not one autistic individual is the same.
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Name	Bella Taylor
Demographic	Service provider, health provider, or educator
Response	Chronic pain, overlapping diagnoses of ADHD and BPD
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Name	Bellamy
Demographic	Autistic individual
Response	Please please please study more into autistic women and autistic individuals assigned female at birth. I was tested as a young child and found to not have it. Likely because I had a huge vocabulary for my age and appeared socially secure. (Both changed quickly as I continued to struggle through school and a world that wasn't built for my brain)
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Name	Ben Yerys, Children's Hospital of Philadelphia
Demographic	Service provider, health provider, or educator; Researcher
Response	Research to establish gold standards for screening/diagnosing, treatment, and treatment outcomes related to co-occurring mental health. The greatest gap is screening and diagnosing co-occurring mental health conditions, because most clinicians use tools developed in non-autistic populations and assume they work the same for autistic people. On the whole, this is not true and may lead to over- or under-identification depending on the specific condition. The ability to screen/diagnose co-occurring mental and physical health conditions is compounded in those with autism+ID.
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Name	Berkeley Fisher
Demographic	Autistic individual
Response	Research women with autism!!! Research the FULL spectrum!!! As a woman, I wasn't diagnosed until I was 26. I struggled my whole life with learning differently, feeling alone, sensory overload. I also think it would be EXTREMELY beneficial to conduct study on social impact on autism. It's a huge challenge being in a social situation/society that does not acknowledge sensory issues, or a society that thinks directness is rude. We are ostracized and it can impact our ability to work. Another good study could be autistic adults in jobs - corporate/desk jobs specifically and reasonable accommodations. Or autistics in post-secondary education. In grad school and corporate America, I was often given poor reviews because I couldn't grasp certain things. There needs to be a better understanding of what autism looks like and the limits we have.
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Name	Bern.W
Demographic	Autistic individual
Response	Please we need research so that medical professionals will understand Pathological Demand Avoidance is a disability under the autism profile. It is not a choice it is Pathological. It is very difficult for young Pda'ers who can not cope in schools and parents have no support without an official diagnosis. Include actual PDA identifying ppl to get the best info about it.
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Name	Bernadette
Demographic	Family member of an autistic individual
Response	More community based or closer programs for individuals to find environments that are unique to one's needs. Supportive housing so they can develop confidence and feel responsible and productive for their own life.
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Name	Beth Greenspan
Demographic	Autistic individual
Response
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Name	Beth Malow, Vanderbilt University Medical Center
Demographic	Service provider, health provider, or educator; Researcher
Response	Treatment trials, particularly of sleep problems, are critically important for autistic people.
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Name	Bethany Coop
Demographic	Service provider, health provider, or educator; Other
Response	EVERYTHING! We need more research into all the mental, physical, and developmental issues which face these children. I believe there are providers out there who have barely touched the edge of the iceberg. These children deserve to live happy, independent, safe lives just like everyone else. It is the lack of understanding and treatments available which hold them back.
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Name	Betsy Pilon, Hope for HIE
Demographic	Representative of advocacy organization
Response	Etiological research is needed, and especially focusing on mild HIE cases that have a higher than average co-occurrence with autism.
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Name	Betty Lehman, Lehman Disability Planning
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More research on methods to address public and workplace anxiety for those who employ or support people with IDD
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Name	Beverly Frost, parent, autism advocate
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Vermont does nothing for adults with autism Yes, they spend huge sums of money but have no one in the AHS system with any knowledge, training or expertise in ASD. The most needy are placed in rural isolation with caretakers with no autism knowledge or training. Needed are comprehensive centers of autism excellence that treat the whole person using real professionals. I just about lost my son, now 58, had to find out of state services.and pay for them, then develop a program and implement it myself. He was able to become productive and work but had so much higher potential with better services.
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Name	Beyza
Demographic	Autistic individual
Response	otizm, özellikle kadınlarda bipolar bozukluk veya BPD gibi kişilik bozukluklarıyla çok karıştırılıyor. bu çok büyük bir haksızlık ve beni AŞIRI rahatsız ediyor!!! [Translation: Autism is often confused with personality disorders such as bipolar disorder or BPD, especially in women. This is so unfair and makes me EXTREMELY uncomfortable!!!]
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Name	BJohnson
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	By far, Pathological Demand Avoidance (PDA) is not widely understood as a subtype of autism and is often thought of as a character flaw or bad parenting. PDA is the number one challenge in our family and needs so much more research on amygdala response. Even in autism circles it is not widely understood or researched.
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Name	Blair
Demographic	Family member of an autistic individual
Response	Pathological Demand Avoidance
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Name	Brandi Johnson
Demographic	Family member of an autistic individual
Response	School grade kid and parents need more support when dealing with schools “IEP”
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Name	Brandy Joy Leigh
Demographic	Autistic individual; Family member of an autistic individual
Response	Research the behaviors/attitudes of allistic people and how they negatively affect those with autism
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Name	Breana Turic
Demographic	Autistic individual; Family member of an autistic individual
Response	Research on the effects of ADHD medication for people with AuDHD is my biggest request! Many ADHD medications do not work the same for people with autism and ADHD so researching which uptake inhibitors are affected by medications for us is extremely needed at this point.
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Name	Brian
Demographic	Autistic individual
Response	A way to read thoughts to translate into text or speech.
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Name	Brian Foti, Non-Speaking Autism Presenter
Demographic	Autistic individual
Response	How Motor Challenges affect people with Autism and Down Syndrome. We are important members of the community and many of us want to be tax payers rather than tax takers.
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Name	Brianna Kerchner
Demographic	Family member of an autistic individual
Response	This is a funny question. There is no single person/doctor/place to get all of this information. It takes years of research and different specialists/doctors before you feel like you have even simple answers. There needs to be MASS studies of autism and correlation and better treatments. My child has spent all 9 of his childhood years in therapies that show just a slight growth every year.
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Name	Brichard Brummel
Demographic	Autistic individual
Response	I think it would be helpful to conduct studies by those who have similar conditions and on a variety of demographics. Much of the more significant studies on autism were done by White neurotypical (not having mental conditions) researchers on young White boys, when symptoms of autism and its co-occurring conditions appear differently in other demographics. Especially, without White neurotypical bias. This is especially significant as many girls, people of color, and adults go underdiagnosed and those who do receive treatment are treated with the intent to "fix" and not with the intent to support positive livelihood.
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Name	Brittany
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Adults need a greater representation in Autism research as well as assessing HCP's for their understanding in Adults with Autism experiencing Mental Health challenges.
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Name	Brittany
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Any research that provides explanation that a co-occuring conditions is what it is and a "behaviour" is actually a stress or trauma response rather than Autism itself. This will lead the way in ridding the world of cruel and inhumane "behavior therapy" still seen as the normal practice today. It's scary how the general public sees these (I.e ABA, PBS) and think that this is a reasonable way to treat a developing child.
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Name	Brittany Daniels
Demographic	None Indicated
Response
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Name	Brittany Shidham
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological Demand Avoidance (PDA) and other potential undiscovered tangential disorders - The UK and Australia have a robust understanding of PDA that’s missing in the US. PDA is similar to ASD but has nuisances that leave these children and adults with misdiagnoses and few tools for support. I imagine there are other similar disorders that don’t have a name - again leaving children, adults, and families without support. Strategies for ASD support can make PDA more challenging instead of helping.
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Name	Brixton Moss
Demographic	Autistic individual; Other
Response	We need to acknowledge the connection between autism, POTS, EDS, and MCAS. There is an undeniable overlap, especially in autistic women and AFAB people, who have been very misunderstood/ignored.
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Name	Brook, No Pressure PDA
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	As I’ve stated, clear research that explores what the PDA community has been saying for years: there are different kinds of demand avoidances, with different challenges. We need dollars spent exploring this as families are suffering.
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Name	Bryanna
Demographic	Autistic individual
Response	More therapists and psychiatrists with more knowledge and personal experiences associated with autism More autism friendly jobs and career opportunities
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Name	Bryanna, self
Demographic	Autistic individual
Response	1.) there is no medication specifically for autism. 2.) autistics are more likely to be unable to finish high school. 3.) private schools discriminate and kick students out for having disabilities 4.) 75% of autistics do not finish college 5.) the mental stigma of the label 6.) autism speaks is a hate group 7.) more accessible public spaces 8.) sensory overload solutions
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Name	Caesar Âûgustus, Âûtist Advocate
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	We need to know about a lot of things of course, NOT for autism screening for eugenic birth control like some places are doing today 😰 but for making accessible in real world to all of us the gift of brain functioning at functional rates, adhd meds are life changing and those must be accessible as a human right, so price must be accessible or state financiated, meds state occultation due to stimulant drug addict craving is leaving the really needy serious user at despair. Cannabis thc and cbd, both and other terpenes must be in study for adhd âûtistics in serious big budget studies on functional-mri at during, after and before, measuring basal and on duty mind states, we must have more information, again, due to drug addict craving we as socially disabled people are left at despair.
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Name	Caitlin
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological demand avoidance needs attention in the United States.
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Name	Calen
Demographic	Autistic individual
Response	autistics and suicidality, causes + solutions
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Name	Cali Hayes
Demographic	Family member of an autistic individual
Response	I would love to see more research on PDA (Pathological Demand Avoidance). There is not enough official information out there.
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Name	Cali, Worker/Student
Demographic	Autistic individual
Response	Autism in adult,bautism in women, autism under capitalism. autism in the 40 hr work week, autistic disease v allistic.
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Name	Callista Markham
Demographic	Autistic individual
Response	There must be more research done on AFAB individuals as well as adults with autism. There are little to no good or helpful resources for struggling adults with autism, let alone help for any co-occurring conditions. There also needs to be a concentrated effort in research about the treatment of individuals affected, and mental health.
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Name	Candice
Demographic	Autistic individual; Family member of an autistic individual
Response	Whole person, trauma informed and ND affirming medical centres maybe? So often when looking for support we are misdiagnosed, gaslit and told it’s all in our heads. If there were a place with trained professionals who cared about patients and wanted to help them live their best lives. Mental health, physical health and community programs under one roof who all communicate together cutting red tape for patients.
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Name	Carey Holm
Demographic	Family member of an autistic individual
Response
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Name	Caroline Rodgerss
Demographic	Researcher
Response	People with autism have a higher co-occurrence of health conditions such as ADHD, anxiety, depression, epilepsy, GI conditions (Medical Conditions Associated with Autism | Autism Speaks, and gender dysphoria than the population at large (Warrier V, Greenberg DM, Weir E, et al. Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nat Commun. 2020.) These co-occurrences provide researchers with a potential Rosetta Stone for understanding the mechanisms at work. Since current understanding of DNA explains only a fraction of these conditions and many are early onset it is possible that they share a prenatal etiology. Since DNA alone does not explain the conditions, epigenetics – a term that encompasses a variety of DNA methylations, histone modifications, and RNA silencing that affect gene expression (Kanherkar RR, Bhatia-Dey N, Csoka AB. Epigenetics across the human lifespan. Front Cell Dev Biol. 2014) -- may provide the key. It is these chemical occurrences at various and specific locations on DNA that are the likeliest cause of phenotypes and health issues that cannot be explained by DNA alone. It would be worth revisiting whether certain obstetric practices unwittingly cause epigenetic changes during labor (Rodgers CC. Continuous electronic fetal monitoring during prolonged labor may be a risk factor for having a child diagnosed with autism spectrum disorder. Med Hypotheses. 2020.)
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Name	Carolyn Holston , Democrat
Demographic	Service provider, health provider, or educator
Response	I would look at the numbers of those people, & distribute the funds equitably
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Name	Carolyn T
Demographic	Autistic individual
Response	To fully understand autism and co-occurring conditions, research must be conducted on a larger, more inclusive scale. As an adult, I have been able to identify as autistic through resources provided by other countries, but I am unable to obtain a diagnosis because the “experts” don’t work with adults.
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Name	Carolyn, Parent
Demographic	Family member of an autistic individual
Response	pDA needs its own research and DSM evaluation and diagnosis
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Name	Caryn Cramer
Demographic	Family member of an autistic individual
Response	We need more research about PDA and autism. it affects one and five autistic people, so it is one of the most common comorbidities. And 70% of PDA kids cannot access regular school because it is too demanding on their nervous system. It’s a serious issue that we need to put attention and resources into. Lowering demands through language style and teaching style and classroom environment would help these children greatly.
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Name	Casey Foster
Demographic	Autistic individual; Family member of an autistic individual
Response	Greater teaching of social, emotional, learning to the general population and how it impacts the acceptance of autistic individuals.
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Name	Cassandra Mccarthy, Self, diagnosed Autistic
Demographic	Autistic individual
Response	More research into effective treatment methods, more research into effective support methods, more research on how to communicate with autistic people, and more research into how to teach skills and knowledge to autistic people.
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Name	Cassandra Rooney
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	There needs to be more research on the co-occurrence of ADHD and Autism. In addition, more research is needed on information regarding PDA (pathological demand avoidance). Lastly there needs to be more research on the biological/hereditary component of autism.
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Name	Cassandra Stanolevich, Mother of autistic child
Demographic	Family member of an autistic individual
Response	Reaching out to families and individuals to ask them.
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Name	Catherine
Demographic	Autistic individual; Family member of an autistic individual
Response	Speak with parents of autistic children, guaranteed they know more than the 'experts'
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Name	catherine martell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	how to change attitudes so more accommodations are voted for.
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Name	Catherine Nimmons, Parent of a child with autism
Demographic	Family member of an autistic individual
Response
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Name	Catherine Slocombe, Mother
Demographic	Family member of an autistic individual
Response
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Name	Catrina
Demographic	Autistic individual; Family member of an autistic individual
Response	More research into how autism and all co occurring conditions presents and affects the lives of women, afab and bipoc people in general. How ADHD medication affects AuDHDers compared to ADHDers Who in the autistic community is affected by co-occurring conditions and what treatments, therapies, and accommodations help improve quality of life.
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Name	Celestine Cookson
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The BH4 pathway and co-occuring disorders, including have Autistic people have issues breaking down various vitamins and chemicals in the body. Autistic females especially have extremely high rates of CPTSD, and some studies have shown rates as high as 90% for those who have experienced sexual assault. Research is fine and good - but we need adequate and appropriate funding and support. Better education for parents, educators, medical providers about identifying and screening for autism. This is especially true for those who tend to fall through the cracks, especially girls, those with higher than average intelligence, hyperlexia, and heightening states of emotional sensitivity and empathy.
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Name	Celine Fortin, The Arc of New Jersey
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	There needs to be more specific research on effective treatment modalities. There also needs to be more effective methods for communication to help people with autism better express their issues and concerns. There also need to be a better integration of systems - IDD, mental health, physical health and behavioral health systems working together to develop and provide holistic care.
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Name	CFT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Research on a greater variety of overlapping conditions. For example, survey of Autistic people about their concurrent conditions). For instance, my unique assortment of conditions is: Leber Congenital Amaurosis / Cone Rod Dystrophy (autosomal dominant CRX mutation with nystagmus); essential tremors; asthma, reactive airway disease, & seasonal allergies; pelvic floor dysfunction, urinary retention, & overactive bladder disorder; ADHD inattentive type; functional dyslexia; Social Anxiety Disorder; OCD; C-PTSD; Persistent Depressive Disorder. Research on accommodation and advocacy strategies, especially that autistic individuals would endorse the need of, rather han just what others think we need. Research on concurrent conditions in autistic minority individuals, (E.G., thse with physical disabilities of various kinds, people of color, women, those in poverty).
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Name	Charles Coleman, The Arc Massachusetts
Demographic	Family member of an autistic individual
Response	Massachusetts Department of Developmental Services (DDS) and Intellectual and Developmental Disabilities (IDD) systems need to be evaluated, analyze, identify the deficiencies and establish a new and improve system to provide needed services to each person that is deem medically necessity to have the appropriate services. There also needs to be a vital component of accountability to the clients which they serve.
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Name	Charli Barraza
Demographic	Autistic individual
Response	Autism from our own perspectives, especially those of AFAB, Black, Queer and/or Disabled people. Diagnostic tools that speak a language we (Autistics) understand. Anything that includes our voices as captains, or at least co-captains, of the metaphorical ship. We don't need a cure, we don't need Autism Speaks, we need a voice in what we have a stake in.
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Name	Charlie B
Demographic	Autistic individual
Response	Research on autism in understudied populations ex women, queer people, people with co-occurring disabilities
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Name	Chris Bruner, Family
Demographic	Family member of an autistic individual
Response	Research that shows how different teaching styles and classroom environments affect autistic students and their ability to learn successfully.
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Name	Chris Knobel
Demographic	Family member of an autistic individual
Response	The U.S. is extremely lagging, comparted to the United Kingdom, on clinical research of Pathological Demand Avoidance.
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Name	chris patton
Demographic	Autistic individual
Response	research in milling minds
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Name	Christi Caprara
Demographic	Autistic individual; Family member of an autistic individual
Response	The overlap between autism and adhd as well as how digestive and metabolic differences contribute to both. And more understanding of how these things present differently in people who aren't white and male.
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Name	Christie Long
Demographic	Autistic individual; Service provider, health provider, or educator
Response	-implications of medical model in schools (as opposed to social model) -chicken or egg? Learning how to address need- Autism or mental health need - assessing iq in nonverbal students? Is there a better way? - complex trauma - late dx in autism - outcomes: are current inclusive models making the cut or hindering growth
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Name	Christie Patterson
Demographic	Autistic individual; Family member of an autistic individual
Response	More focus on undiagnosed adults especially women
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Name	Christina
Demographic	Family member of an autistic individual; Other
Response	There could be a deeper discussion about seizures, PANDAS, PANS, DNA mutations including MTHFR, GI issues, food allergies, paradoxical reactions to medications, high titers from childhood vaccines, HBOT treatment, inflammation and oxidative stress, toxic and autoimmune encephalopathy, sensory processing disorder. People need to be looked at as individuals and do not dismiss their behaviors because they have autism. The growing autism crisis is going to require more health care workers and out of the box ideas. Some ideas to share include drive through clinics for health care. Home visits and sedation for dental care. Community safe homes for respite and health care/ medical intervention that does not require a hospital bed.
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Name	Christina Stearns
Demographic	Family member of an autistic individual
Response	Include the expertise of autism behavior specialists, neurologists, and psychiatrists/ psychologists who have experience working with these dually diagnosed children and adults. Some of the leaders in this industry are at Bradley Hospital in Rhode Island, and the Kennedy Krieger Institute (The Center for Autism Services, Science and Innovation/CASSI) in Maryland.
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Name	Christine Buffington
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response
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Name	Christine Conway, Parent
Demographic	Family member of an autistic individual
Response	More training to medical and psychological professionals
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Name	Christine Crum, Professionally Diagnoses with ASD Level 1
Demographic	Autistic individual
Response	Do more research on autistic females. I know a lot of people are trying.
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Name	Christine Deitcher, Mother of a 9 year old boy DS-ASD
Demographic	Family member of an autistic individual
Response	Physical research of what’s happening in the brain. I would like to look at everything from brain scans to surgical options, CRISPR, pharmacology interventions, gut micro biome studies… I would gladly participate in research studies if we can get my son to comply with the study requirements.
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Name	christine smallin, orange county dmh
Demographic	Service provider, health provider, or educator
Response	differential diagnosis
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Name	Christopher M Sculley
Demographic	Autistic individual
Response	Bullying we are a great resource for them to make them feel better about themselves. Some of us don’t look like we are disabled.
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Name	CJ Morefield
Demographic	Autistic individual; Service provider, health provider, or educator
Response	More research into trauma and autism - specifically the effects of social trauma, the rate of experiencing of other types of traumas, and the similarities between PTSD and autism, the short and long term effects of any early intervention trauma (caused by holding therapy/food reinforcements) or interventions that had non-autistic affirming goals (making eye contact, reciprocating, etc) More research into early interventions and treatments for hypermobility/EDS.
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Name	Claire
Demographic	Autistic individual; Family member of an autistic individual
Response	Research into the PDA (pathological demand avoidance/persistant drive for autonomy) occurance
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Name	Claire Rattey
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological demand avoidance
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Name	Clayton Oliver
Demographic	Autistic individual
Response	It would be nice to see some practical social science focused on improving acceptance and understanding of autistic people in social, educational, and occupational settings.
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Name	Cody Rabalais, Parent/Autism Society of Acadiana Board Member
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	School districts that allow outside services to come into the schools to help children versus schools districts that do not. Services such as Applied Behavioral Analysis (ABA)
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Name	Colette
Demographic	Autistic individual
Response	I am not a researcher so I do not know but I think the medical community should be more knowledgeable about level one autism and also co-occurring conditions for autism.
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Name	Colleen
Demographic	Family member of an autistic individual
Response	Education...school, police, judges, jails, guards, attorneys, it's awful. Due to high functioning Summit learning picked and chose who to keep and sent the high functioning into the world to fail. The whole system has failed badly.
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Name	colleen allen, autism alliance of michigan
Demographic	Representative of advocacy organization
Response
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Name	Colleen Floyd
Demographic	Family member of an autistic individual
Response	When my daughter with Autism presented with Psychosis in 2019 I had doctors and therapists and psychiatrists and school counselors and caseworkers tell me that they had never seen that co-morbidity before. That tells me that more research needs to be done in this area because as a society we need to be educated to understand, for example, that often "Autism" is not just "Autism" as most people understand it, but instead a complicated set of issues that need to be understood and embraced as part of the diagnosis and therefore part of that person. We need to accept and help one another as these same people still have a lot to offer society.
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Name	concerned citizen
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Research cardiac health and autonomic functioning in autistic individuals for the safe of increasing life expectancy. I'd like to live as long as someone without autism, why can't we do that yet? Cardiac health would be a really decent place to begin.
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Name	Connie Fitler
Demographic	Family member of an autistic individual
Response
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Name	Coordinated Care Alliance
Demographic	Representative of advocacy organization
Response	Diagnostic criteria, equal access, Medicaid advancement and increased funding.
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Name	Courtney, Parent of diagnosed child
Demographic	Family member of an autistic individual
Response	We need more research on the efficacy of clinical interventions to better inform school-based accomodations and professional development for schools. For example, I find that the use of Declarative Language with my child has made mountains and lasting positive impact. Study this approach among other alternatives. Also, occupational therapy-based therapies should definitely be studied more! Public policy should most definitely look at the connection between sensory regulation and academic performance too. The schools seem to be in the dark ages when they look only at whether or not the child can "access the curriculum"
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Name	Crickett Ravizee
Demographic	Family member of an autistic individual
Response	There needs to be more research on best practices to educate people who are likely to care for autistic individuals but not necessarily specialize in caring for only autistic individuals. I believe, researching techniques, and then implementing them, would improve the experience of the community as a whole.
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Name	Crow
Demographic	Autistic individual
Response	Mote research into sleep disturbance would be lovely, especially into circadian rhythm disorders. Lots of autistic people have them and they are commonly misdiagnosed.
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Name	Crystal Neihart
Demographic	Family member of an autistic individual
Response
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Name	Crystle
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Cullen Forster, Veteran
Demographic	Autistic individual; Family member of an autistic individual
Response	Co-screening for ADHD and ASD may help identify individuals who are experiencing and enduring the contradicting traits of both; additional effort needs to be made to consider populations of persons of color and for female patients especially – the stubbornly-prevailing belief about autism is that it only affects young, white, male children, when that is simply the population least-strongly conditioned by society to hide their autistic traits from scrutiny. Autism and ADHD are far, FAR more prevalent than current figures depict, especially when considered as a co-occurring condition; the CDC lists a figure of 1 in 36 individuals, while the apparent prevalence – in the university setting – is much closer to 1 in 10, by visible behavior signs alone. Add to that figure the number of individuals who have become adept at adapting their behavior – by conscious effort – to societal expectations, and the figure rises sharply; they are still autistic, and still suffering difficulties not shared by the majority. Updating current institutional knowledge about ADHD and ASD, to reflect the actual lived experiences of autistic people, is critical to helping autistic individuals find community and support from their co-sufferers, who have learned effective coping skills for the struggles involved with their unique neurological development.
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Name	Cyndi
Demographic	Family member of an autistic individual
Response	More research on gestalt language processing, AAC, different therapies for autistic people.
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Name	Cynthia L. Reed, Parent
Demographic	Family member of an autistic individual
Response	Research that explores the connection between gut health and developmental delays. New approaches to speech and language acquisition. Look into why cancer rates in people with Autism is so low and what else may be connected to that "protection" as a way to unscramble some of the associated comorbidities.
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Name	Cynthia Macluskie, Autism Society of Greater Phoenix
Demographic	Family member of an autistic individual
Response	the biggest issue is raising awareness with the mental health and physical health professionals that work with those on the spectrum. There is so much discrimination and lack of knowledge around comorbid conditions. We need to use research to inform and educate professionals.
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Name	Cynthia Tyler
Demographic	Family member of an autistic individual
Response	All of it. More funding is needed. A more comprehensive understanding from society that autism has profoundly changed the fabric of how we live our lives together. More research in how autistic individuals can be critically important in understanding the use of higher-level algorithmic thinking that is now employed in most of the technological applications we use daily. And you must include autistic individuals in a collaborative way while completing research. Autistic people are not diseased and unaware lab rats. Listen to autistic voices FIRST.
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Name	D. Buzz, guardian and SDE Supervisor
Demographic	Service provider, health provider, or educator
Response	No more research is needed. Let's apply what everyone knows about this situation to creating more jobs and wages to the people desperately needed to do the hands-on, every day care.
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Name	Dale
Demographic	Family member of an autistic individual
Response	Study people with autism who have learned to communicate by using a letterboard or keyboard (S2C or RPM). There are a number of people with autism who can type independently. They should be approached and the issue of how to research and study this form of communication should be discussed.
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Name	Dallen Williams
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Adult and female autism should me researched extensively. Current austim models are based primary on studies of male children, same as ADHD. With the general lack of study of female autism and ADHD, women are often left to self-manage and many are never diagnosed in part due to the different social expectations on females. This leads to lifelong self-esteem issues and often abuse. The separate disorders and the way they interplay to become somewhat invisible in women should be a major focus of study.
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Name	Damaris Hadayia , Parent
Demographic	Autistic individual; Family member of an autistic individual
Response	The benefits of therapies like ABA, benefits of comprehensive IEPs families don’t have to fight for, and the affects that more resources would have on the improvement of comorbid conditions and overall wellbeing/ life satisfaction for people who have them.
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Name	Dana Haff
Demographic	Autistic individual
Response	Genetic research to provide a better understanding of the common comorbid health conditions, especially as a consequence of hypermobile Ehlers-Danlos Syndrome. I have had several relatives die of strokes due to vascular disorders. I don’t want to be next.
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Name	Dana Holz, Center for Drug and Health Studies, University of Delaware
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Research on substance use, sexuality, victimization, crisis response, mental health.
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Name	Dani
Demographic	Autistic individual
Response	Firstly, more available assessments for adults
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Name	Danica Allen, Educator
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	More research into real lived experiences.
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Name	Daniele Armstrong
Demographic	Autistic individual; Family member of an autistic individual
Response	Looking at individual conditions with every autistic is the best way to assess and filling those needs. Not a lump sum survey, that will serve very few. Any services will be greatly valued, but still nonetheless, leaving many autistics, isolated and excommunicated even more in our society.
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Name	Danielle Christy, Private Practice psychologist
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Research that is led by and organized by autistic individuals. Less research about etiology and cause. More research about how to support this wonderful group of people in the way they believe is most effective.
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Name	Danielle Mays
Demographic	Family member of an autistic individual
Response
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Name	Danielle Terrell
Demographic	Service provider, health provider, or educator; Other
Response	Research for autistic adults continues to lack. Addressing gaps in research and increasing studies for non-white cisgendered males. Research on co-occurring mental health conditions. Supporting autistic adults throughout their lifespan. Future planning. Research around co-occurring PANDAS and PANS as diagnosed children become autistic adults. Healthcare access and training of healthcare professionals to support autistic people.
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Name	Danielle Willsher-Goodman
Demographic	Autistic individual; Family member of an autistic individual
Response	Listen to peoples experiences, read, lots of helpful diagrams online, many people disbelieved all life. Need to be heard and believed. Text book conditions do not always catch people who are on periphery but they suffer all the same and should be listened to even if do not tick all boxes and criteria. Sliding scale and spctrum with verying degrees depending of diet, coping mechanisms, gut health, life experiences, support. Many struggle to speak their experiences and need support helping to express what they are going through. Very distressing when had lifetime of other stressful and strenuous experiences
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Name	Danni Zou
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More research into PDA, including emphasis on how to best serve in the school system
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Name	Danny Schaible
Demographic	Family member of an autistic individual
Response	Much much better recognition of and early intervention of autistic individuals with catatonia. Any individual that engages in chronic aggressive or self injurious behaviors should be screened and potentially treated for catatonia, but this often does not happen or happens way later than it should. How can we develop better protocols for screening and intervening in this treatable condition?
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Name	Danyale Sturdivant
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Culturally responsive research needs to be included to address the intersection of RACE, GENDER AND AUTISM
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Name	Darcy Janowski , parent
Demographic	Family member of an autistic individual
Response	medicine that is safe in children and has less long term side effects
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Name	Dave, A citizen from Oregon
Demographic	Autistic individual
Response	There needs to be evidence, and easily accessible literature around 1. antecedent interventions in epilepsy. like https://www.tandfonline.com/doi/abs/10.1080/028457199439955 In my life there is a Skinner paper on the possibility of antecedent behavioral interventions can help with epilepsy, this study is an expansion but doesn't go far enough, the science needs further exploration - this hits the nexus between epilepsy and autism in that most treatment for autism is based in behaviorism 2. Some work needs to be done to figure out better tools for job hunting for this cohort. Low paying, stressful, ill fit, and mismatched jobs lead to a reduction in the health and well-being of folks experiencing these challenges. That is a health crisis. Researching what happens when the job acquisition process is handled for the subject/patient/autistic person and seeing what happens to their quality of work would be useful. It would also be interesting to see what happens to their earnings v. their allistic or fellow autistic cohort.
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Name	David
Demographic	Autistic individual
Response	I think I was diagnosed in wrong order. Only recently autism but many of my earlier diagnosies may have been due to my behaviors caused by autism. Suspect trauma (cptsd) centered in struggling as autist. All anxiety. Not sure if bipolar mere symptom of my autism but working with docs to establish
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Name	David Gartland, Father
Demographic	Family member of an autistic individual
Response	Early Diagnosis Sensory issues Causes of autism Cure for autism
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Name	David Grady, California State Council on Developmental Disabilities, Central Coast
Demographic	Representative of advocacy organization; Other
Response	Causation. Social Learning vs. ABA. Best practices in treatment & stress management. Vocation development and training. Importance of early diagnosis and intervention.
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Name	David Kaufer, Parent
Demographic	Family member of an autistic individual
Response	We need research demonstrating that spelling-based communication is credible and reliable. There are thousands of case studies now of spellers who have been able to communicate for the first time (and demonstrate their intellectual capabilities) but there is a very vocal minority who opposes this methodology that is trying to discredit this population with outdated and misleading statistics in a propaganda campaign. We need credible organizations/institutions conducting research that shows that this population is clearly capable of independent thoughts/responses.
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Name	David McWaters
Demographic	Family member of an autistic individual
Response	Need a new focus on adults with autism living in society and working for a living wage
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Name	Dawn Werner
Demographic	Family member of an autistic individual
Response	I don't know where to begin with this one. As a parent of an autistic child I "know" these conditions are "co-occuring" but only because I've read it online, but we've never had much help or success on how to improve the conditions or how to help navigate it.
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Name	Day, Autistic, ADHD, Dyslexia,and co
Demographic	Autistic individual; Representative of advocacy organization; Other
Response
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Name	Dean
Demographic	Autistic individual; Family member of an autistic individual
Response	We need to focus a lot of research on pda - it is crippling and costs the country a fortune - 70 % of children with pda cannot access school. Pda ers often end up in institutions or needing round the clock support yet it still isn’t diagnosed in most areas.
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Name	Deb
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Survey mailings to autistic individual households and provide opportunity for questions, support.
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Name	Deb
Demographic	Family member of an autistic individual
Response
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Name	Deborah Bilder, University of Utah Huntsman Mental Health Institute
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	A prospective evaluation of screening tools for mental and physical health conditions in autistic people presenting in crisis is greatly needed. Additionally, measuring their impact on assessment results, treatment recommendations, and clinical outcomes will inform policy and standards of care.
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Name	Deborah Gill
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Debra Yurschak, NCSA member
Demographic	Family member of an autistic individual
Response
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Name	Delia Ruiz
Demographic	Family member of an autistic individual
Response
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Name	Deon
Demographic	Autistic individual
Response	Research about common autoimmune diseases within autistic communities
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Name	Devorah, mother
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	research on medications and treatment for moderate to severe anxiety, the first line ssri have terrible side effects and many others as well.
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Name	Diana Gonzalez Madin
Demographic	Family member of an autistic individual
Response	Genetic factors to discard or analyze the origin of the condition and confirm wether or not can be treated.
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Name	Dongmei Li
Demographic	Other
Response	A person's brain weight develops primarily during the first three years of life. Babies are equipped with hearing at birth, even in the mother's womb, and officially begin to speak between 1 and 3 years old. For young children without congenital hearing diseases, autism and input language errors, confusion, and language input It is related to insufficient input volume and incorrect language input method. Once a child develops language problems, it will in turn affect intellectual development, social problems and psychological problems. This challenge is particularly acute for bilingual children. I am opposed to prematurely labeling children as autistic. I believe that bilingual children whose English development is delayed due to unfamiliarity with English and are labeled as autistic are pseudo-autistic. I believe that because public school education in the United States begins at the age of 5, strengthening research on effective language input for children under 5 years old and improving related education and government strategies are the most effective ways to avoid childhood autism and adult psychological problems.
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Name	Donna Costello, Private practice. Retired from public school as school psychologist working with students K - 12 with what was formerly known as Asperger’s
Demographic	Service provider, health provider, or educator
Response	More research on assessment of autism of students with high levels of intelligence, especially in girls who present differently. Also, research on assessment of high intelligence in adults w/ autism, that includes functional assessment of daily living. I assessed a 22 yr old woman with verbal IQ of 160, perceptual IQ of 145, with co- occurring ADHD, depression, high levels of anxiety, who could hardly get out of bed, work at a low level job, etc. The discrepancy between her high level of intelligence and poor functioning in everyday life was debilitating. AND it was impossible to find supports and services for her that were affordable for her and/ or her family. We need more support and services, similar to what is offered to those with intellectual disabilities.
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Name	Donna Johnson, Parent
Demographic	Family member of an autistic individual
Response	Research on the impact of challenges with executive planning disorder
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Name	Donna Narey
Demographic	Family member of an autistic individual
Response	Not sure.
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Name	Doreene Donald
Demographic	Family member of an autistic individual
Response	There should be more programs that help parents with kids who are autistic
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Name	Dr Christopher Pyne and Holly Swan, Parents
Demographic	Family member of an autistic individual
Response	Where is the research explaining the tsunami of autistic young people that is obviously growing at a frightening rate???
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Name	Dr Jessica Myszak, Help and Healing Center PLLC
Demographic	Service provider, health provider, or educator
Response	There needs to be much more research on autistic adults, and the supports needed over the lifespan. Research on masking, PDA, the impact of an affirming environment, the impact of various supports should be considered. Even more important, this information needs to be disseminated to providers and trainees that work with autistic people.
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Name	Dr. Autumn Dae Miller
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Let's first look at WHO is doing the research, who is FUNDING the research, and HOW that information is going to be used. Once that is completely transparent and confirmed for the good of humanity rather than the perpetuation of stereotypes, then the following research foci would be helpful: 1) The effect of holistic bio-psycho-social treatments working in tandem to support Autistic people with health needs of any sort. 2) More research on Autistic Adults! People don't STOP being Autistic at 21! 3) Trauma and Autistic survivors 4) The effects of big-pharma psychotropics as compared to supplemental (natural) medications on neurodivergent brains to see what is ACTUALLY most beneficial for anyone with co-occurring mental health diagnoses and what the long-term effects of those medications are on the body and mind.
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Name	Dr. Bernadette "bird" Bowen (She/they/Dr.), Media Ecology Association
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Other
Response
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Name	Dr. Henny Kupferstein, Doogri Institute
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization; Other
Response	There is a known trifecta of EDS, MCAD, and POTS. There is also a known comorbidity of mitochondrial diseases, and genetic metabolism errors. As long as this is not linked, we will be forced to seek out treatment from multiple specialists who do not communicate with each other, and run the risk of 'doctor shopping' or 'malingering'.
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Name	Dr. Karissa Burnett, Divergent Pathways: A Psychological Corporation
Demographic	Autistic individual; Service provider, health provider, or educator
Response	A recent study from researchers in Scotland asked autistic adults what their research priorities are, which mirror what I see from the autistic community in the United States. According to these autistic adults, the least important things to research are “genetics, treatments and interventions, and cause [of autism]” (Cage et al., 2024, “What are the autism research priorities of autistic adults in Scotland?”). Instead, there is a call to research “mental health/well-being, identification and diagnosis of autistic people, support services, knowledge and attitudes toward autistic people, and issues impacting autistic women” (Cage et al., 2024). Fundamentally, research focusing on the subjective experiences of autistic people with co-occurring conditions is essential. This includes studies that prioritize the voices and perspectives of autistic people to inform practices and policies that genuinely reflect their needs. Studies that explore the impact of cultural, socioeconomic, and environmental factors on the prevalence, identification, and management of co-occurring conditions in autistic individuals are also needed. Of note, Pathological Demand Avoidance (PDA) is a unique profile of autism that has research backing in the UK but has been minimally-studied in the US. It is imperative that more research is done in this area to increase understanding and provide more effective support.
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Name	Dr. Marcy Epstein, University of Michigan/Athena Autism
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	I covered this in another question, but we need a lot of new empirical, observational, and narrative research (that's my specialty) on autism itself, understanding the spectrum and our divergence, since all areas of health, including mental health, are based on a neurology, on pharmaceuticals, on a medicine based on allistic knowledge and allistic experimentation. We need research in these areas, too: autism and social difference; autism constructs in Medicine and other health fields; autism and self-immolation/addiction/compulsion; autism and early childhood, autism and aging, autism and sexuality/relationship; mental illness.
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Name	Dulce
Demographic	Autistic individual
Response	Treatment and support for autistic children and adults with other genetic disorders that seem to be linked to autism such as: Ehlers Danos Syndrome, it's umbrella subtypes and comorbitidities.
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Name	Dylan M. Fish, Disabled Autistic Student at RIT
Demographic	Autistic individual; Family member of an autistic individual
Response	There is a crucial need for further research to understand the intricate interactions between autism and its co-occurring conditions. This includes investigating effective interventions, identifying risk factors, and developing targeted strategies for improved healthcare, education, and support services.
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Name	E.R
Demographic	Family member of an autistic individual
Response	Acknowledging and understanding more about pathological, demand, avoidance (PDA)
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Name	Elena, Mother
Demographic	Family member of an autistic individual
Response	Research into better living and work options- which should include in-field research amongst employers in what they would find helpful to encourage them to hire people on the spectrum. Naturally, a revamping of employment education for those on the spectrum is important as well.
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Name	Elenna
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	There needs to be more research on the current status and needs of autistic adults of all support needs. Autism research primarily focuses on young children - there are few resources for autistic adults who have moderate or lower support needs and standard therapy and psychiatry often does not support us effectively. Research into the effectiveness of DBT and EDMR for autistic adults may help. Additionally research into the effectiveness of Occupational Therapy. Additionally, research into chronic pain disorders may be helpful. More diagnostic capabilities towards a non-speaking population who struggle to communicate in other ways could help improve quality of life for autistic adults. Surveying the availability of ingredient-restricted foods may be a good first step to address co-morbid food intolerances and celiac disease. Surveying the availability and efficacy of public transit and paratransit may be a good first step towards improving integration for those with co-occurring conditions that make driving difficult or unsafe. (I know that personally I would prefer to take public transit rather than drive but it is not available where I am.)
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Name	Elio McCabe, Autistic Women & Nonbinary Network
Demographic	Autistic individual; Representative of advocacy organization
Response	We encourage researchers studying autistic people’s health outcomes to consider the intersection between autism and other forms of marginalization, oppression and maltreatment. Autism researchers should listen to the experiences of autistic people. Far too often, the voices of parents and nonautistic people are treated as more important, more relevant than those of autistic people themselves. In her book of the same name, the philosopher Miranda Fricker introduces the concept of “epistemic injustice,” or the idea that marginalized people are unable to know their experiences because they occupy a low status on the social ladder. Although she focuses primarily on misogyny and racism, this principle can be applied to autistic people, too, as well as disabled people generally. Research that serves the autistic community should emphasize quality of life for autistic people, rather than the convenience of parents or practitioners. Co-occurring psychosocial disabilities and autism. Although some research on autism and co-occurring mental health conditions (e.g., PTSD, bipolar, generalized anxiety) exists, it is relatively scanty. Since autistic people experience stress and trauma in a world that was not adapted for our needs, it is likely that autistic people are more likely to develop psychosocial disabilities in response.
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Name	Eliot C., Disability Network Washtenaw Monroe Livingston
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	How autistic sensory experiences contribute to mental illnesses like depression and anxiety Outcomes of autism-affirming mental health care Substance abuse treatments that are most effective for autistic clients In other words, anything that involves talking to and listening to autistic people (whether we communicate verbally, with AAC, in written language, or trusting that when we show emotional distress, there is a reason behind it)!
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Name	Elise Aguilar, ANCOR
Demographic	Representative of advocacy organization
Response
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Name	Elizabeth Bennett, Children's Hospital Colorado
Demographic	Service provider, health provider, or educator
Response	More work is needed to best understand how to reduce anxiety in autistic people. More work is needed on how to treat trauma in autistic people.
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Name	Elizabeth Doolittle
Demographic	Family member of an autistic individual
Response	More awareness of how this presents with type 1 autism - kids are not getting diagnosed and most people do not understand masking and how skills are present one day and not the other or how it depends on the situation. Kids that are high IQ are judged for not trying or as behavior problems and not kids with disabilities. My son's rigidity gets in the way of the help we try to give him. He is resistant to any help and does not see his behavior as a problem to the extent that it is. We struggle with school issues related to his inattention and there are interventions that could help him but he will not accept them. I would like to see research around working with our kids with Autism and learning disabilities (yet high IQ).
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Name	Elizabeth Emen, Emen Counseling Services
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Research and data that conveys the reality that autistic traits present in a variety of ways, that shine a line on true neurodivergence and move common understanding beyond the limited historical viewpoints that expected to see verbal and social deficits, or high intellectual functioning but low social motivation. Research that supports the idea that social motivation and the desire to connect socially cannot be adequately measured through neurotypical standards and when individuals are not accommodated or supported to develop positive self-identity. All individuals need and are motivated by human connection, inadequate understanding of autism leads to stereotypes that autistic people are not social humans and deficient in skills. What people have been conditioned to understand and look for as autism both in professional and layperson circles is a barrier to truly understanding autistic neurotypes and the co-occurring differences, experiences and symptoms that result from being different and misunderstood in the world not designed for them.
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Name	Elizabeth Larned, MA, LMHC-A
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Research on the actual number of people with hEDS (hyper-mobile Ehlers Danlos syndrome) versus the previously estimated numbers. It's a connective tissue disorder, as mentioned above, which is highly correlated with eating and feeding complications, speech, heart health, all the joints. It's sorely under-researched and most physical therapists aren't trained to recognize it well.
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Name	Elizabeth Olson
Demographic	Autistic individual; Family member of an autistic individual
Response	More research on why we have different bodies compared to neurotypicals. It’s hard to get a diagnosis as an autistic person because doctors often can’t figure out what’s wrong with us. more research on how jobs can be more accommodating to autistic people, and designing buildings to be sensory friendly (minimizing echoes, natural lighting)
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Name	Ellen
Demographic	Autistic individual
Response	1. Do traits increase or decrease with age? 2. Do traits increase or decrease based on level of support needs? 3. What are college & job statistics? 4. Housing? 5. What is the likelihood of co occurring?
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Name	Ellen Kopel-Puretz
Demographic	Family member of an autistic individual
Response	link between epilepsy and autism - perhaps it can lead in the right direction for a cure for epilepsy the effects of ABA - and resulting PTSD
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Name	Elyssa Bolt
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Research needs relating to autism include, but are not limited to, appropriate pedagogical methods, the phenomenon of masking autistic traits, giving priority to autistic voices when we speak about ourselves, the exact nature of the bipolar-borderline-autism dynamic, factors that differentiate success from struggle within the autistic population, the impact of media portrayals of autism, the different expression of autistic traits in different genders, and the impact of aging on autistic traits.
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Name	Emilee
Demographic	Autistic individual
Response	Have people with autism conduct the research and come up with the study questions.
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Name	emily
Demographic	Autistic individual
Response	More professionals need to be trauma-informed and stay up to date on best practices for complex trauma - in fact, all medical professionals should be required to keep their education on this topic active and ongoing. The amount of harm that is coming directly from the medical industry to autists - for whom chronic illnesses are statistically more likely - is demonstrative that a broken system can be repaired by accommodating the most vulnerable members of a community. I believe that by giving (needs-based) spaces to autistic people to explain in more depth what our experience is like, the whole of society can improve our infrastructure to produce better outcomes from infancy - both psychological and physical. Our species is in a crisis of empathy, and to draw the line at doctors hurting patients and facing no consequences for permanent nervous system damage would be a world-saving move, on a historical/ideological scale. Be kind. Listen. Believe. Respect. Care. This is research that takes place in the heart, and in the determination to see a better world, which I know we all do.
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Name	Emily
Demographic	Autistic individual
Response	Shift your focus away from young, white boys and focus on women, people of color and different age groups as we experience the world differently and have to adjust to social norms that white men don’t experience.
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Name	Emily
Demographic	Autistic individual
Response
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Name	Emily Garris
Demographic	Family member of an autistic individual
Response	I’d love to see more research into the concept of demand avoidance. Where the brain and nervous system sees all sensory input as a demand and therefore the brain is constantly in a state of fight/flight/fawn/freeze. Also it would be great if some of the “branches” or “offshoot” phenotypes of autism could be classified as disabilities and have actual medical diagnoses.
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Name	Emily Paige Ballou
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Research into autistic experiences of movement differences/motor challenges that might improve knowledge of both social communication difficulties associated with body language differences, and how best to serve autistic people in services like physical and occupational therapy, support those with complex communication needs, and better support autistic people in gaining the skills we need to live autonomously (meaning: not necessarily "independently," but best able to direct the course of our own lives). Research into the safest and best-tolerated treatments for anxiety, depression, as well as epilepsy and heart disease (which are common causes of early death in autistic and developmentally disabled people).
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Name	Emily Ransom
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Additional research needs to be investigated on the individuals with autism who are nonverbal or lack of communication skills.
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Name	Emily, Autistic individual
Demographic	Autistic individual
Response	Really any research on autism and its comorbidities that focuses specifically on adults, especially women and individuals of minority ethnicities, is critically needed at this juncture. The vast majority of autism research is conducted on young children, and that which is conducted on adults, invariably includes primarily or exclusively white males as its experimental group participants.
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Name	Emma
Demographic	Autistic individual
Response	More research needs to be done on autistic burnout, because it triggers a lot of co-occurring chronic illnesses, especially those involving autonomic dysfunction. How to recover from autistic burnout needs to be explored as well.
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Name	Emmett Lockwood
Demographic	Autistic individual
Response	I think more research and training should go into the interaction between autism and specific co-occurring conditions. To be clear I would never wish to get rid of my autism or any of my other conditions, many of them I consider inherent parts of my and while some of them can be a pain in the [profanity redacted] I would not know who I am without them. What I would wang go see though is not having to explain or work through with every one of my doctors how a condition affects me because of my autism, and while there is different experiences because Autism is a spectrum I would want more research into where these interactions are so it feels like less guess work.
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Name	Erin , Parent/guardian
Demographic	Family member of an autistic individual
Response	Profound autism needs to be acknowledged. Not everyone has exceptional skills that make them a wizard with technology numbers. Individuals with profound autism, often have self injury, OCD, anxiety that keep them from being able to access the world, keeps them at home, keeps caregivers in a constant state of emergency. My own son ended up stuck in the hospital for 47 days a year ago with no support or services and no way to safely. Bring him home. It’s a crime to not acknowledge This group of individuals who desperately needs services isn’t support as well as their caregivers
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Name	Esther Caletka, HOME Incorporated
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	pre-natal identification Early Childhood diagnosis More education, in this area for all teachers - not just Special Ed More education for society, and neurotypical kids. More support for these individuals and their families, post graduation More training for doctors - in the 1980s I provided a clinic site, and taught Pediatric Residents about autism and D.D. One of the OPWDD MDs, recently referred to this as a positive experience, which paved his path to his current career. Training for Law Enforcement.
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Name	Ethan, Care Giver/spouse
Demographic	Family member of an autistic individual
Response	Effects of stimulus. effects on Adults (separate for both male and female).
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Name	Eugenia Ramsey
Demographic	None Indicated
Response
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Name	Evren Wiech-Barnes
Demographic	Autistic individual
Response	Stop treat us as if we have “deficits” because we are not like you. Improve how you recruit Autistic people for studies. Regularly ask the community what we want and need. We desperately need services to help adults that are LEVEL 1 on our career and life path. We want to work. We want to function. We need workplaces to take accommodation and staff education seriously. We should not be paid less for our labor when we give equal work as any other. We should also have training to start our own businesses if we cannot function in an office setting. The goal should be to allow each Autistic person to be all they can be and tailored to their specific needs and challenges. Please put money into researching this. Stop trying to “fix” us and start trying to work with us. Maybe put money into researching parenting practices. Or even better stop funding ABA because it’s nonsense. Teaching us to obey is not teaching to do more than mask to make others feel more comfortable around us. I don’t see how their comfort is worth my mental health.
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Name	Ewa Omahen, PhD, Retired school psychologist
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	*More research, resources and training dedicated to AAC *There is limited evidence of the effectiveness of ABA in this population. Other therapies need to be explored and studied. There needs to be better funding in special education and private therapies beyond ABA, including OT and speech and language therapy. *More emphasis on the interplay between diet/gut amend brain/behavior
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Name	Fin Finney
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Lived experience data from autistic people both qualitative and quantitative and always paid. Study pilot programs that create greater accessibly of autism diagnosis and greater accountability of provider harm.
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Name	Firos Shamsudeen
Demographic	Family member of an autistic individual
Response	No much therapy option found for children more than 9 year. We are facing this issue to get her any services like speech or behavioral therapies. Also looking any occupational therapies. We have good trainings in public school under Rockwood school district, however we are unable to find any resources on how we can improve her through extra services outside of schcool hour.
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Name	Fraida Flaishman
Demographic	Service provider, health provider, or educator; Researcher
Response	1) auto immune and gastro intenstinal prevalence with those with autism to identify if they are at risk for occurrence of autism based on their physical related issues to determine early prevention methods. 2) The difference between individuals born with autism or those that developed autism in early childhood 3) How to differentiate autism for other similar presenting conditions 4) Determining which interventions are most helpful for individuals with autism 5) Identifying the possible causes of autism including if environmental toxins may be causing or exacerbating individuals with a predisposition for the disorder
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Name	Frank Camilleri
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep research most importantly, and how to teach autistic communication to non-autistic people, and vice versa.
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Name	Freya
Demographic	Family member of an autistic individual
Response	More research into pathological demand avoidance profile of autism and presentation in girls
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Name	Gabriele Arnhold
Demographic	Autistic individual
Response	Research. Just resarch. Especially on rare diseases like CIPO or Mitochondrial Disease. But our lives don't count. We are irrelevant to (our) society. So you will never do research that will help us autistic people.
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Name	Gabrielle Connelly
Demographic	Family member of an autistic individual
Response	Food therapy, sleep disorders, swimming lessons need to be offered through health insurance to prevent the leading cause of death for autistic individuals which is drowning
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Name	Genevieve Chaput, mother of 21yo with autsim
Demographic	Family member of an autistic individual
Response	Comorbidity of autism and schizophrenia, comorbidity of autism and depression from inability to socialize with neurotypical community
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Name	george knoth
Demographic	Family member of an autistic individual
Response	what is causing severe aggression in this population, what meds work best to control these behaviors
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Name	Gerald Wilgus
Demographic	Autistic individual
Response	Don't know about research. Rather appropriate help for ASD-1 individuals in social coaching would be good.
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Name	ginamarie
Demographic	Other
Response	i feels the services and resource and doctor office and teachers area be more worse to so the call encounter help empower my life then the complete strangers be. these folks be trained vetted degrees etc - so why the moron oxy? when i ask for write down please take notes please record app please - i get push back dismiss. and then when need qustions ask help like with the stitches it be alarming the responds i receive. another be the abuse we be receive from same areas of the services resources in place to allow us full function. i feels some times the label cause more damage and the judging of the box slam me in relates. i feels many the research and grants no go deep enough - the impact be yet another island to self - no deeper connection to make a true impact for those us on spectrum in this nation. we be a money making machine - and u be over drug many us that be have another entire area need of research side effects etc. sample u put me on a cheap [profanity redacted] drug predzone and at no time relates that to me now have sugars health probs until i see a differ doc that tell me stop take the predzone and oh my my sugars go back normal range.....the level of basic disconnects over site be hurtful cause it be hinders our life level function - a life function that already considers not normal
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Name	Glen , The Jewish Guy Business venture PTY LTD
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Glenda Hayes, Grandparent
Demographic	Family member of an autistic individual
Response	Education for parents to avoid issues of video games or create video/educational programs to address problems seemingly from autism. Also for kids with gait or stemming issues, physical education teachers could employ PT or OT techniques in helping those students. Ex: That could be exercises to strengthen the core.
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Name	Gloria Derosa
Demographic	Family member of an autistic individual
Response	I think a big one would be researching the gastrointestinal disorders that people suffer from it really has a negative effect on their quality of life. another area of research should be communication for non verbal persons with Autism. Many of the speech therapists are only being trained for working with “mild” speech disorders but lack any training or expertise in working with non verbal individuals.
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Name	Grace, Autistic person
Demographic	Autistic individual
Response
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Name	Grant D. Sparks, MS
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research is needed on autism as whole, and how to work with autism rather than how to force autistic people to function “normally”. As well, we require more research on effective ways to help regulate the autistic nervous system in a way that is not suppressive or harmful. Additional therapies, medicines, and systemic approaches should be studied, and these studies should, whenever possible and with the highest priority, be orchestrated, lead, and overseen by autistic people. Neurotypical bias needs to be removed from research into autism. Focusing on developing methods for coping with the resultant depression, anxiety, and other disorders that stem from the debilitation of the autistic nervous system would be of major benefit in the treatment and care of autistic people.
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Name	Greg
Demographic	Autistic individual
Response
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Name	Gretchen Stewart, Center for Learner Equity
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	I would start with more funding for neuroscientific root cause research that results in translatable intervention for co-occuring conditions. For instance, motor differences. Researchers, including those seminal in defining the characteristics of Autism more than 60 years ago, have been evidencing links between brain plus body both structurally and functionally. Put more RFPs out for this kind of work in conjunction with practicers to develop new approaches to intervention.
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Name	H
Demographic	Family member of an autistic individual
Response	How to effectively treat anxiety in people with different social/emotional awareness levels. Where demand avoidance and inertia comes from and how autistic people can accomplish their goals while dealing with the challenges of demand avoidance.
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Name	Harriet Stuart
Demographic	Family member of an autistic individual
Response	Connection between gut and brain; behavior analysis to help communication.
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Name	Heart of Texas Behavioral Health Network
Demographic	Service provider, health provider, or educator
Response	Additional research is not the most pressing issue. Putting into practice what is already known must occur ASAP. Provision of mental health treatment is seriously lacking. There are not enough providers, and evidence-based training is needed.
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Name	Heather
Demographic	Autistic individual
Response	stem cell therapy, research in general. We need more funding for actual help, in our day to day lives.
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Name	Heather
Demographic	Family member of an autistic individual
Response	Take a level 3 autistic child or adult that is too old to fit in a grocery carrt seat to a grocery store. Then try taking them to family fun events like Chuck. E. Cheese, Theaters, Amusement Parks, Arcade Centers etc. and document the experience then implement some means for inclusion. Provide free training to daycare centers on autism behaviors, communication and ABA therapy basics.
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Name	Heather
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	More research into how autism develops through adulthood when someone is not diagnosed or recognized as autistic as a child. More reliable and research-based therapy to handle the anxiety and depression that comes with learning late in life that you have autism.
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Name	Heather
Demographic	Family member of an autistic individual
Response	Gifted. Many that are Austisic are also gifted and not just with disablities.
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Name	Heather Bourne
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Please: Research Pathological Demand Avoidance My daughter qualified first for a social communication disorder diagnosis, then an autism diagnosis. Yet the behaviorally-based autism interventions actually made her anxiety, depression, and family relationships worse. Only after I stumbled upon the concept of Pathological Demand Avoidance -- an autism profile, or perhaps a separate disorder-- did I find interventions that actually brought more peace to my daughter and our family. It's recognized as a mental health/ neurobiological condition in the UK and Australia but not in the US---making it so much harder to access information.
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Name	Heather Cellini , SLP
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Research on how PDA (pathological demand avoidance) and other co-occurring conditions exacerbate challenges to participation in activities of daily living
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Name	Heather Gray
Demographic	Autistic individual
Response	Anything. Access to materials, access to assistance, more neurodivergent acceptance in the workplace
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Name	Heather machin
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	We need to exercise more observations and interviewing of autistic children and adults to gather a much wider net of what the experience is like, then account for the surrounding circumstances such as culture, beliefs, gender, concurrent conditions, etc, then tease apart how some of these factors might work together. We have to ask more questions.
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Name	Heather margiotta
Demographic	Family member of an autistic individual
Response	Adult behavior programs 18+, doctors that have more training dealing with special needs,
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Name	Henrietta Reder, Friends of Ann Kiley Center; Parent
Demographic	Family member of an autistic individual
Response	Research on how to treat aggressive behavior - whether it's through medication, behavior analysis or a combination of both. I cannot emphasize how much my family member's co-occuring conditions have negatively affected his and our lives. Not enough services exist to help these individuals.
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Name	Holly
Demographic	Service provider, health provider, or educator; Researcher
Response	More research is needed on systems level changes in schools, for example, on how to best support students with severe behaviors. The training doesn't exist, the expertise doesn't exist, and its failing the high needs students. We need more behavioral interventions that work across various environments.
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Name	Holly Connor
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	How to categorize the spectrum to best understand how autism effects each individual. The spectrum is too large and too many assumptions are made on ability based on one word, autism. When the DSM changed to autism spectrum disorder, losing Aspergers as a way to see an autistic person as cognitively able, but still needing social, behavioral, or communication supports lumped the diagnoses all together and many assume that all have low IQs. Or the contrary and people assume they are all astrophysicists. Looking at IDD-intellectual and developmental disabilities and the definitions of the moderate, serve, profound, and taking it to the other side of gifted and seeing that as a cause of issues as well could be helpful. More research into the brain and how it processes information. Finite answers on the genetic side of causes of autism. Finite answers on environmental causes of autism. Research into why the rate of autism is highest in our military families.
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Name	Ian Morris
Demographic	Autistic individual
Response	In order for fair research to be done on we autistics, we need to first be accepted by society as equals. We autistics are not better nor worse than anyone else in the US republic. When we are accepted as weird bu tequal we can then dp proper research on how we autistics are perceived.
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Name	Ilana Gruber, Pennsylvania Advocates and Resources for Autism and Intellectual Disabilities (PAR)
Demographic	Representative of advocacy organization
Response	In general, more research is needed around evidence-based diagnostic and therapeutic interventions for autistic individuals with co-occurring mental and physical health disorders. Below are several specific areas for consideration: A. Sleep disorders, including sleep medication aids and sleep hygiene. B. How to best support autistic individuals who are gender questioning or gender nonconforming. C. Treatment for OCD for individuals with Level 2 and Level 3 ASD diagnosis. D. Effective staff training methods for supporting autistic individuals across settings in the community, day services, and employment. E. How to best support transition age students (school to adulthood). F. Genetic and environmental factors influencing co-occurrence.
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Name	Ines Echegaray
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Ask Autistic People and not in survey form with time limits. Create something in Praxis that allows us to engage when we can with you, instead of creating an opportunity for us to do do on YOUR Time Line. We can't, oftentimes, on anyone else's time line but our own.
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Name	Irene Tanzman, parent/guardian
Demographic	Family member of an autistic individual
Response	Research whether community-based placement are adequately addressing special healthcare needs.
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Name	Izabella Pulvermacher, Dental Coordinator Department of Developmental Services
Demographic	Service provider, health provider, or educator
Response	We need to create space where all specialties work together to accommodate proper medical and dental care
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Name	J Maust, HUB 302
Demographic	Family member of an autistic individual; Other
Response	The medication game of balances of dosages & kinds when involving several co-morbidities. How to control the anxiety & thus control the ability to respond to a situation instead of spiraling. How independence may be achieved using technological aspects which calm anxiety. Beneficial in-patient & availability. How addressing social & physical needs lessens emotional disorder distress. Best job settings, if any.
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Name	J Olson
Demographic	Family member of an autistic individual
Response	Research is desperately needed for the PDA (Pathological Demand Avoidance) group of Autistic individuals. Both adults, but especially adolescents. Students are being mislabeled as willfully defiant, behaviorally challenged, socially ostracized, discriminated against, and being deprived of the right to a free and appropriate public education in the least restrictive environment because of a lack of understanding and unwillingness to work through the challenges that PDA Autistic students face. PDA is widely recognized and diagnosable (therefore able to be supported) in other countries, but not in the USA.
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Name	Jack Brownn
Demographic	Autistic individual
Response	Research those who are also self-diagnosed autistic
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Name	Jackie
Demographic	Autistic individual
Response	Research in adult females or AFAB people, people of color. The connection between hypermobility and ASD, whether there is a link to Ehlers Danlos Syndrome
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Name	Jackie Ceonzo, Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	The seizure component and gut component need to be part of the screening process upon diagnosis We need more medications with less side effects especially weight gain We need best practice for caring for these individuals - this caring for those with aggression should be trained to handle it like professionals are We need more settings where care can be administered and monitored to many people are handling these issues at home and doctors don’t have a clear picture of what’s happening with meds prescribed etc. We need places for these guys to live and be cared for because too many are affected and I dare say won’t be cured.
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Name	Jaime
Demographic	Family member of an autistic individual
Response	Full extent research needs to be done on two things: Research needs to be done on how these conditions can be prevented before birth and if the conditions can't prevented before birth: Research needs to be done on the possibility to eradicate these conditions once they appear. The biggest challenge us families with a family member in the spectrum have to face is being heard and agencies understanding this is a real critical condition affecting our nature, our surroundings and poses many obstacles to the family's and child's well being. The families dealing with a family member in the spectrum are constantly questing for answers to our questions as to how does this happen and when it happens how can these conditions be eradicated. Team-work makes the dream-work and I'm sure all agencies working together is crucial to develop the powerful component that will identify a real live solution to the problem rather than just an ongoing treatment. Now that these conditions have spun in such incredible high numbers and many important agencies are finally realizing and accepting - I'm sure the correct intelligent minds working together will be able to focus and identify great techniques to help make these conditions minor, almost seamless or even eradicated. My child needs it and I'm almost positive the cure is already working it's way through!
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Name	James V. Bradley
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	James Weingardt
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	nonspeaking, minimally speaking or unreliable speaking individuals are ignored or projected onto, discriminated against when not taught to advocate effectively for self. Study on reduced anxiety and depression by using Ayers Sensory Integration or other neurofeedback approaches during emotionally exhausted or traumatic times. autistic youth or adults whom grew up in an alcoholic family or in a family where they are systematically not listened to. stigma of autism vs neurodiversity. Study of neurodiversity models from autistic community, neurodiversity model shaped by typically developing professionals and community members with consultation of neurodiversity individuals (IE Boulder Valley School District may pass 1st (known to me) neurodiversity policy in the nation. Further studies expanding sample size, etc: A Sensory Integration Intervention in the School Setting to Support Performance and Participation: A Multiple-Baseline Study how to implement Ayers Sensory Integration Intervention on a larger scale at the state and district levels. Study on using Ayers Sensory Integration for children 0-3 yrs old, 9-13 yrs old, 14-21 yrs old, adult and geriatric populations.
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Name	Jamie Cullen, Parent
Demographic	Family member of an autistic individual
Response	We need to find out why aggressive behaviors occur. What will medically help our kids so they do not hit their eyes or bite their skin until it is bloody. I was walking near my Dad's farm in South Dakota. I saw a bright green piece of corn and brought it to a farmer and asked what it was. They said it was the pesticide that is put around each piece of corn so it kills worms that attack it. These pesticides are in our ground, food and water. Is this causing our kids to have autism and co-morbid conditions? What is this doing to all of us? Is this causing cancer. We need to start researching all of these terrible things that no one realizes is going on and causing so many issues.
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Name	Jamin Johnson
Demographic	Family member of an autistic individual
Response	YES... an it needs have on-going funding!!!!! Band-Aids are not going to help the 1 out of 6 kids with autism and co-occurring conditions. We need more research and support!
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Name	Jana Young
Demographic	Family member of an autistic individual
Response	PDA! It’s so hard navigating support for my PDA autistic son with ADHD … especially as PDA is not in the DSM yet so it’s discounted as a contributing factor by his doctors, and ADHD is not given support in our school system, so he’s faking through the cracks in both public institutions.
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Name	Jane Horn
Demographic	Family member of an autistic individual; Other
Response	Research is needed to understand what is going on with a child who only speaks in irrelevant phrases. When a child speaks clearly, words that he/she has heard, but do not fit the present situation, the problem is not hearing. Does this child have any comprehension of the words he/she speaks?
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Name	Jane Roberts, University of South Carolina
Demographic	Researcher
Response	sex effects in anxiety, brain based and ANS function as potential bio behavioral mechanisms.
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Name	Jane Seymour
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Understanding Pathological Demand Avoidance
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Name	Jane, County AE
Demographic	Other
Response
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Name	Janet Callahan
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Research is needed to first prove that medical and educational and mental health professionals are ignoring all these things and that they should be treated. Research is also needed to sort out how much of these things are "just autism" vs actual conditions that could be resolved, and thus might improve people's lives and outcomes. The list of co-occuring conditions is long, but professionals often don't know the list is as long as it is.
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Name	Janet Shouse
Demographic	Family member of an autistic individual; Other
Response	A top research priority for those with the most significant impairments should be the alleviation of aggression, self-injury, pica, and elopement. There are seemingly very few truly effective medical and behavioral treatments, and we need research into ways to prevent, if possible, these behavioral health conditions. We need more research on effective medications, cannabis, electro-convulsive therapy, and behavioral/sensory approaches. We also need research into effective counseling and talk/play therapy for those with significant communication limitations. We need a greater emphasis on the needs of adults who often lack access to appropriate care—both mental/behavioral health and physical health--and whose distressing and dangerous behaviors cause great trauma for the individual, their families, support persons and other care providers. For those with higher cognitive abilities and fewer communication issues, more research is needed for effective treatments, including medications, for anxiety, depression, and OCD, so individuals won’t have to face multiple medication trials to find one that works well. We need hospitals—both primary hospitals and psychiatric hospitals—to be accommodating to the needs of autistic adults who have medical complexities, intense sensory needs, and/or intellectual disability. Too often autistic individuals with ID or co-morbid medical conditions are not accepted by hospitals or stays create trauma for the individual.
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Name	Janice
Demographic	Family member of an autistic individual
Response
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Name	Janice, Parent
Demographic	Family member of an autistic individual
Response	Early screening and diagnosis for girls, how to create sensory friendly environments.
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Name	Jared Goodrich
Demographic	Autistic individual
Response	Understandings
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Name	Jason B, Self
Demographic	Autistic individual; Family member of an autistic individual
Response	Research burnout, shutdown, PDA, depression, anxiety. Research how to support adults who disconnect from society. Research support for untreated chronic medical problems due to communication issues and resources. Research how to help adults with daily tasks like meals, chores, maintenance, etc. Research how to provide jobs that accommodate autistic people. Research how to fight exploitation of autistic people.
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Name	Jason Montgomery
Demographic	Family member of an autistic individual
Response	I think there needs to be research aimed at the common issues that autistic people deal with: - social deprivation - sleep deprivation - executive functioning issues - sensory issues
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Name	Javier, Advocate
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Jeanine Castagna
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Interviews with autistic people and families are necessary for research to identify barriers.
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Name	Jeannie C
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	SO MUCH RESEARCH!! Right now we operate in small online communities where we share our own lived experiences as autistics. We need people from and within the community who are on the spectrum to be apart of this research. We need to be testing children at young ages to detect early childhood autism which then can link that child with occupational therapy and other services; NOT ABA (basically conversion therapy to appear more neurotypical while harming the autistic individual immensely) and the child can build on their skills and find areas within their development that might need more assistance and guidance. The goal is not for the child to be less autistic but to be more educated in their autism so that the individual/parents can find useful accommodations to make their day to day lives more bearable and enjoyable.
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Name	Jeffrey Poms
Demographic	Autistic individual
Response	Autism research has really only just begun! It started with Dr Asberger who only believed boys were affected. Most with autism have been misdiagnosed with personality disorders like narcissicm, anti social disorder, psychopathy, sociopathy and borderline/bi polar... there are even cases i've found where in the early 1900's through to the 40's many boys were institutionalized as they were thought to have schizophrenia. Girls have only just recently in the last 20 years begun to see how they present differently than boys. much more research needs to be done on the genetics, family history.
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Name	Jeffrey Reeves
Demographic	Autistic individual
Response	I read that the Amygdala part of the Human brain is more accelerated in autistics. That has been my lifelong curse of being afraid and hopeless. I've not had anywhere near enough sex. Young Women need to have sex with me and we will discover if that cures the Aspergers/Autism.
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Name	Jeffrey Slater
Demographic	Autistic individual; Family member of an autistic individual
Response	Better understanding of autism-related traits specifically in adults and how they contribute to co-occurring conditions
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Name	Jeffrey Thomas
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	We have plenty of individuals such as myself who have had to live with this condition and make due. I will never be successful because I am unable to hold a high responsibility job, so I am only able to work as a teacher aide or gas station attendant and have been stuck in this cycle of poverty due to my disability.
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Name	Jemima J
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Research looking into deviations in development of speech that contributes to inappropriate social approach. Memory processes that may play a role in repetitive and ritualistic behaviours.
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Name	Jenise Woolf, Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	The NADD is a wonderful resource for information and data, but more needs to be done to disperse the information and bring about change to the way states, agencies and hospitals provide services. There needs to be more research into effective therapeutic interventions. ABA is not the solution to a manic episode. Approximately 90% of individuals with ASD have experienced some type of trauma, more research needs to be done on prevention, self-advocacy, and most importantly, treatment.
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Name	Jenn
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Jenn Raley Miller, Parent
Demographic	Other
Response	- Research is needed to establish better definitions and measurements for ASD vs. ADHD vs. SPD etc. Overlapping behavioral definitions are causing confusion. - More research is needed into how the spectrum of intelligence, from intellectual disability to profound giftedness, interacts with the forms of neurodivergence listed in the DSM.
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Name	Jennifer Colberg, Grandma
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	There is so little being done and with the rise in level 3 autistic children we need to catch up sooner rather than later
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Name	Jennifer Higgins
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological Demand Avoidance
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Name	Jennifer Proffitt , Parent and Teacher
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	There needs to be more research into RSD rejection sensitive dysphoria. There needs to be more research done on dyslexia and programs implemented in public school systems. There needs to be emotional support and mental health counseling for students in every grade level every week. My son has not had any friends other than the ones I have helped him make. It is very lonely at school for him and others with autism. Best buddies did not do anything for him. There needs to be a system in place for helping children with autism integrate into the social aspect of their schools by having a peer mentor, a group, or other Outlet so that they don't feel alone.
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Name	Jennifer Quigley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More about medical implications.
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Name	Jennifer Reppond, autism parent
Demographic	Family member of an autistic individual; Researcher
Response	• Professional development for general education teachers, para-professionals, staff, and administration currently in the classroom. • Proper education at the university level for ALL teachers - not just those choosing special education. • More training and education for doctors, etc. so that parents aren't left feeling like they are alone. What I learned about autism did not come from any of our mainstream doctors. It came from hundreds of hours of interviewing professionals in the field as well as reading and researching journals, articles, and research materials. • Training and education that is manageable to the parents. Lots of great things are going on, but I was never told about one. I know them because I stumbled upon them. Most parents are not working on 3-4 advanced degrees; they want to know what the path is. • There needs to be a path - to some degree - that is standard - to some degree - that parents can be led to - and helped along the way - with people who can guide them. Governmental entities are a joke and a waste of time - and chances of anyone getting services after years of waiting to come up on a list - are slim to none. • Training and education for the community – employers – organizations – churches – etc.
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Name	Jennifer Sibley
Demographic	Family member of an autistic individual
Response	More research needs to be done around effective treatment for individuals with Autism and co-occuring anxiety disorders (or any mental health disorders), particularly, those with communication challenges, so that these individuals can participate activley in their own treatment.
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Name	Jenny Folley
Demographic	Autistic individual; Family member of an autistic individual
Response	more surveys more info to gps
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Name	Jesenia, NeuroSpicy Networking
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	All autistic research teams AND they must be DIVERSE in culture, ethnicities, genders, and avoid replicating the issues of dominate culture and white supremacy culture. Until we listen to all autistic stories, we are not including the most marginalized or being intersectional in understanding the spectrum. This includes non-speaking and non-verbal autists. Also, need to look into the interplay of nutrition, AND co-occurring conditions such as EDS, Marfans, hypermobility, POTS, MCAS, IBS, Fibromyalgia, MFCFS and Long Covid.
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Name	Jess Butler
Demographic	Autistic individual; Family member of an autistic individual
Response	STOP with the "biological" research--just take it that we HAVE autism and help us try to live with it, do NOT attempt to explain it away, and possibly raise the issue of EUGENICS: breeding out autistics by pregnancy termination, fertilized egg cell selection, etc. Research medications that will help treat the symptoms of autism: there were promising oxytocin research trials--what happened to that? Research ethical treatment/therapies for the symptoms of autism--STOP using/recommending ABA and behavioral modification therapies because they are DEGRADING to autistic people! Research the gut-brain connection and immune response system to see where treatments can be aimed (like the microbiota transfers) AND force the insurance companies to cover these procedures! And actually, THAT would be another MAIN concern--forcing insurance companies to actually cover any medications, procedures, or treatments discovered by thorough research!!!
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Name	Jesse Scott
Demographic	Autistic individual
Response	Causes of incontinence, sensory overload,lack of body awareness. Research investigating autonomic nervous system dysfunction connections between incontinence, GI issues, seizures and other physical health concerns. Neurodiversity-affirming intervention models addressing mental wellness challenges exacerbated by incontinence-related anxiety, depression or trauma.
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Name	Jessica
Demographic	Autistic individual; Family member of an autistic individual
Response	We need to research how girls present since most research is based on boys presentation. We also need to better understand the relationship between ADHD and ASD.
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Name	Jessica Bearden
Demographic	Service provider, health provider, or educator
Response	There is SO much research still needed. As a counselor, I see that autistic individuals have difficult processing traumatic events. What takes 3 months for neurotypical individuals takes double for neurodivergent. There needs to be mental health research regarding how to speed that up. Needs to be reseat h in schools about their methods of addressing behavioral concerns. There needs to be research for families and what resources they need.
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Name	Jessica Blackmon, Just an ADHD dyslexic autistic girl
Demographic	Autistic individual
Response	The correlation between families and their conditions along with the studies with the long psychological trauma that occurs in children to adulthood as well as the adults that are currently along with this is a huge can of worms honestly there's so much that it needs to be done that I can't fit in this message.
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Name	Jessica Iverson
Demographic	Autistic individual
Response	What therapies and medications help people cope with being autistic and other co-occuring conditions without forcing them to mask their symptoms. Why some autistic people aren't able to mask their symptoms even if they wish to. Diagnostic assessments that are more accurate. How abilities and needs change over the lifespan.
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Name	Jessica Mullaney
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	A greater understanding of the links between ASD and conditions like joint hypermobility leading to better treatment options would be helpful, but the biggest issue is lack of awareness among healthcare providers currently. (It's great to do research, but if that information is not widely known by the people that individuals with ASD are seeking help from in a healthcare setting, then it doesn't do much good from a practical standpoint.)
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Name	Jessica Phillips
Demographic	Family member of an autistic individual
Response	We need more people to provide services to special needs kids in sussex county.
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Name	Jessica Smith
Demographic	Autistic individual
Response	Listen to autistic researchers. stop going to aullistics for understanding us. They will never be able to ask the right quetions cause they do not have our disability(ies) they do not struggle with what we striggle with, they do not understand it the way we do. and they are not only truamatizing us but making living in this world so much harder. listen to autistic researchers, realize that one way is not always the right way
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Name	jewel brobst
Demographic	Autistic individual; Family member of an autistic individual
Response	understanding that it may look like 1 person has 20 problems but 15 of those relate back to autism. understanding that as a autstic(spelled the way i normally spell it. idk why it says its wrong sorry) person you may have to get people to understand that what you have isnt just autism. in my 9th grade health class that was 1 semester long (half of a school year) we learned about depression, anxiety, some other common mental health problems, drugs. i feel like autism and adhd and some of the co occurring conditions should be added to that due to a kid might go their whole life thinking their just a bit weird and geitting bullied and having no idea why and never find out their autstic unless they go online or find someone who knows they are and relates to that. just make autism and its co occurring conditions normilized please
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Name	Jill Escher, National Council on Severe Autism
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	A top research priority for our severe/profound autism population is the alleviation of distressing and too-often fatal behaviors of aggression, self-injury, property destruction, pica, and elopement. There is a desperate need for more efficacious medical and behavioral treatments, and of course more understanding of routes for prevention. We need more research on: psychiatric medications; electro-convulsive therapy; other brain-activity modifying therapeutics such as TMS; and behavioral/sensory approaches. Much more emphasis must be placed on the needs of adults who often lack access to appropriate care and whose dangerous behaviors cause enormous burdens to families and care providers.
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Name	Jill Ide, University of Washington Autism Center
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	unsure
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Name	Jim MacNaughton, parent
Demographic	Family member of an autistic individual
Response	anxiety reduction.
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Name	Jimee
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research in AFABs!!!! Continuing research on how ASD presents differently in all individuals! The DSM-5 doesn't support women or other minorities... More training for providers on MASKING and compensating (which can be in boys as well as girls)
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Name	Joanna
Demographic	Family member of an autistic individual
Response	PDA needs to be recognised and diagnosed alongside the autistic assessment . It is a specific set of traits and relatively easy to spot from a young age . It would help parents get support and SEN schools to use a different approach to these kids . Autistic kids without pda have a different set of needs , PDA needs to be identified and recognised to enable our kids to receive actual support and access SEN schools they have an entirely different approach to allow our kids to thrive . Parents must stop being blamed for professionals not understanding their kids needs . Parents have to research and understand their kids themselves in order to get any kind of support . As PDA isn’t recognised parents receive damaging advise on how to handle these kids that absolutely doesn’t work . The system needs to recognise that pda is very real and unlike other profiles . Parents and kids need support not blame . Education for professionals is key , CAMHS needs to identify and diagnose PDA profile .
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Name	Joanne Miller
Demographic	Service provider, health provider, or educator
Response
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Name	Joanne Van Hoosear
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Jobless autistic
Demographic	Autistic individual
Response	In general I don't think autism is researched enough, but I'd love to see research into the full capabilities of autistic people in childcare so we can adopt since we're already allowed to have our own kids by childbirth. I'd also like research into helping us at jobs and in the education system so we can get support because 60% of us are unemployed including me. I apply everywhere and can't get a job because I'm disabled and autistic.
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Name	Jody McCormick
Demographic	Autistic individual
Response	With the proper accommodations and support, autistic people can add truly incredible value to organizational goals. However, the typical expectations set in a working environment hinder us from being able to perform at our best. I have worked in many industries and by far the most accommodating and supportive working environment I've experienced is in the software engineering space. Companies in that space tend to be much more flexible with time off, more understanding of the need for autonomy, More research is needed at a national level to assess what accommodations and what strategies are effective and what are harmful to people with autism in the working environment -- as well as the real impact to GDP provided by investing in effective accommodation and support strategies for people wherever they lie on the autism spectrum.
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Name	joe valenti, parent advocate
Demographic	Other
Response	I believe CMS needs to understand one size does not fit all. We seem to think about autism with high functioning individuals. The individuals at the higher level of the spectrum have much different needs. More feedback from parents/ guardians
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Name	John
Demographic	Autistic individual; Family member of an autistic individual
Response	How businesses can better accommodate & include/reduce stigmatization of ADHD-Autistics in the workplace.
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Name	John Collins, Mass General
Demographic	Family member of an autistic individual; Researcher
Response	First recognize that people with profound autism are NOT represented in research! Focus on this population that needs the most help...but cannot ask for it. What causes autism and GI and autoimmune medical conditions in people with profound autism? Why do they have more co-occurring conditions and that develop earlier in life? Why do states have such poor data on autism, housing for people with autism, medical care use? We need better data in order to plan/provide adequate medical care, housing, transportation, work/volunteer opportunities.
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Name	John Saito, Oregon Commission on Autism; Washington County Developmental Disabilities Advisory Council; Oregon Home Care Commission
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	What are the drivers that result in the disproportionate amount of co-occurring diagnoses for those with a profound (level 3) autism diagnosis? What therapies and medications should be required mandatory coverage in Medicaid and private health plans for those with an autism diagnosis, given the higher likelihood of certain co-occurring conditions? What social service program enhancements (via Medicaid Waiver / HCBS) should be made to better address the comorbidities that occur most commonly with autism (especially those with severe / profound autism)?
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Name	John Yacks Jr.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Further behavioral and mental health research could be done to see how issues and policies that were in place, like the pandemic, would be beneficial
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Name	Jonathan Fratz
Demographic	Autistic individual
Response	There needs to be research in establishing better practices to address co-occurring conditions in autistic people, particularly children and youth in receiving diagnoses and accessing services, as well as establishing guidelines in how medical professionals serve autistic people by addressing those co-occurring conditions without placing their cause under the scope of autism.
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Name	Jonni Jordyn
Demographic	Autistic individual
Response	There are so many co-morbid overlaps. I think the relationship to ADHD is well recognized, but other overlaps with Ehlers Danlos (connective tissue) need more research. This connection can be important for medical treatments, for example, before I had braces installed on my teeth, I forewarned the orthodontist that she may see some differences and her whole office is amazed at how quickly my teeth moved into place. Treatment options could be modified if these relationships were better understood.
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Name	jorja harper schall, OHSU lend
Demographic	Autistic individual; Researcher; Representative of advocacy organization
Response	Housing group homes
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Name	Josephine Weber
Demographic	Family member of an autistic individual
Response	More genetic research. We have 5 boys on my dads side diagnosed w autism or learning disorders.
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Name	Joye, service coordinator in HCS program
Demographic	Service provider, health provider, or educator
Response	teaching sign language to the entire community. what would happen if everyone learns basic sign language? Cultures already use sign language like, high five, thumbs down, middle finger, shake your fist. Then, put the people together who pick up on the sign language and let them have their culture. let them learn together. What would happen if there were dorms or apartments that cater to people who sign? people who can hear should not be prevented from learning sign language.
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Name	Jude
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	levels of lack of relatedness --- leading to fruitless dysfunctional (deeply denied painful) 77 yrs of life
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Name	Judith Ursitti, Profound Autism Alliance
Demographic	Representative of advocacy organization
Response	Autistic people who require round-the-clock care throughout their lives experience unique challenges that warrant targeted research. Additionally, a renewed focus on the meaningful inclusion of people of all ages with profound autism in clinical research is critical, as currently, they are severely underrepresented. Specific areas of focus that would benefit those with profound autism include: Research specific to communication as it is currently minimal at best. Research focusing on intense behaviors that people with profound autism experience, frequently resulting in injury and isolation.
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Name	Judy Stoltz
Demographic	Family member of an autistic individual
Response	Study the motor issues, apraxia, dyspraxia, and assume competence
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Name	Jules Good, Autistic Self Advocacy Network
Demographic	Autistic individual; Representative of advocacy organization
Response	Existing research, including reports from the Department of Defense’s TRICARE Autism Services Pilot, has pointed to the inefficacy of ABA: “43% [of ABA participants] demonstrated no improvement or increased intensity of symptoms over a two-year period". Other criticisms cite impacts like “consent violations and removal of autonomy, pathologizing unremarkable behavior, and interventions where the risks are greater than the benefits.” However, we lack research that focuses on (a) additional harms of ABA to multiply marginalized autistic people, including those who are POC, Black and brown, nonspeaking, IDD, women, non-binary, trans, and LGBTQ+, from the Global South, people with mental health disabilities, people with co-occurring medical conditions, and people with higher support needs and (b) additional benefits of occupational, sensory, and other therapies to those same groups., Until research fully addresses the ways in which ABA specifically harms multiply-marginalized autistics, we cannot understand how to equitably formulate evidence-based ABA alternatives for these populations. In general, autism research needs to be led by and developed with autistic people and address the needs of autistic children and adults across the lifespan. Autistic people need to be involved in all stages of research design and paid for our work. Research about our community must be made accessible to us by communicating key findings in plain language and Easy Read.
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Name	Julie Bresette
Demographic	Autistic individual; Family member of an autistic individual
Response	Additional research needs to be done on how autists respond to medication, the correlation between their nervous system and disease, treatments beyond antidepressants for anxiety and sleep, and how to better accommodate different learning and communication methods in everyday life.
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Name	Julie Emig
Demographic	Family member of an autistic individual
Response	Any and all methodologically sound research is needed and applicable! The more we know about these conditions, the more we can be proactive in treatment.
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Name	Julie Lackey, OKIPSE Alliance
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Studies beyond ages 0-14 that deal with everything I have referenced . Although there is not enough research for all ages, there is definitely much more research put towards young children. It is almost like the medical community decides that once a person reaches high school graduation, they no longer have autism. In reality, young adults desperately need research on all the conditions I have listed in this survey. Once they no longer have the support of the K-12 system, they are often "on their own" as agencies are not equipped, understaffed, and working with old information that treats them like they are all the same and often do not assume competence with does these individuals a grave disservice. With the numbers as staggering as they are for autism diagnosis, it should be incredibly obvious that targeted research is desperately needed for these individuals. We have a young adult son, I used to run a parent group, have started social skills groups in multiple schools, have a non profit that funded 2 inclusive post secondary education programs, and now am the Director of a state Alliance that is all about inclusive post secondary education. I have direct experience and know what I am referring to in this survey.
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Name	Julie Schweitzer, UC Davis
Demographic	Researcher
Response	Research into the causes, be they environmental, genetic, epigenetic. Novel treatments as many of the treatments seem to be variants based on some of the same ones used for decades.
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Name	K
Demographic	Autistic individual; Researcher
Response	More research is needed on autism and mental health, particularly PTSD and OCD. Additionally, more research is needed on managing and treating co-occurring disorders, especially GI and sleep disorders, as well as preventing chronic illness as autistic individuals age. Too many studies only include children, only examine prevalence, or are only concerned with potential causal mechanisms for autism. The focus needs to shift to how to improve quality of life throughout the lifespan. This includes improved assessment, medical and mental health professional interactions with autistic people, self-care and condition management, and long-term outcomes.
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Name	K
Demographic	Autistic individual
Response	More representation in female studies. Most autism diagnosis go to people who have been socialized as men, however a majority of people socialized as women are also autistic, they have been taught their whole lives how to mask it better, and find it difficult to get valid support from medical professionals. I find myself dismissed and humiliated when I try for diagnosis, it’s stressful, and discouraging. Sometimes even finding a female practitioner won’t take you seriously. I got told I was too anxious and depressed for them to tell, and that I might be autistic, I might not—which isn’t a solid answer. I can’t get accommodations for that. How is it that everyone I knew as a kid could tell there was something different about me, something they couldn’t describe that made it difficult to form relationships, but my own parents and people with doctorate degrees couldn’t. TLDR: do more studies on women/afab people with autism.
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Name	K
Demographic	Autistic individual
Response	I think there needs to be an understanding of the vast developmental differences in autistic people. Some people are non verbal, some are dyslexic and others hyperlexic. Some people suffer from dyspraxia while others suffer no coordination issues. It seems that autism is so vast that its really hard to encompass everything that can come with the label.
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Name	K
Demographic	Autistic individual
Response
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Name	Kaalyn
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Research into the overlap between autism and (separately): - Complex PTSD and dissociative trauma disorders - queer and gender non-conforming dentities - Ehlers-Danlos Syndromes - POTS - MCAS - perseverance on social injustice - delayed dx of female-presenting children - disparity of delayed dx in non-white populations - A re-examination of the spectrum gradient and the benefits/cons of functioning label use
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Name	Kacey M
Demographic	Autistic individual; Family member of an autistic individual
Response	Whether or not ASD has any different types of classifications regarding where peers might have common traits with bodily structures (beyond support needs). What type of environment is well suited for a student with low to moderate support needs, moderate to high support needs, etc.. commonality between types of passion topics. ways for medical, educational, and supportive professional to develop tools for autistic people. Learning why ABA therapy has been used, and how to learn tools to succeed without sacrificing our own wellbeing. Data collecting for which doctors know what undiagnosed autism can look like, and how to support the patient. Why hEDS is common, why dysautonomia is related, what happens during a nervous system “breakdown”, how ASD bodies react to different conditions (temperature, textures, overall senses and nervous system responses), histamine intolerance commonality rate, allergy rates, location and environmental factors during/post puberty
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Name	Kaela
Demographic	Autistic individual
Response	PLEASE fund research done BY autistic researchers as all other research has so much inherent ableism and neurotypical bias it is so dismissive of the autistic experience and therefore does nothing to actually help others learn about and support the autistic experience in an authentic way.
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Name	Kai
Demographic	Autistic individual
Response	Sleep studies, more research on how many medications interact differently in our brains to find more effective ones, educational program development aimed at teaching autistic people to better read and understand social situations rather than just how to mimic them.
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Name	Kai C.
Demographic	Autistic individual
Response	Research on how schools teach media literacy and doing it early. It is one of the largest things I have overcome in learning “Oh when people say this thing, they actually mean-“ and outside of a realm of the scientific, even things like metaphor and hyperbole can often fall flat. Now, I am very good at understanding the nuances of things. As a child, I thought cartoons were real and I could chase someone with a hammer or a knife and them still be okay afterwards. You need to explicitly layout that there are more than just good and evil in the world, and as such much like neurodivergence, good and evil exists on a spectrum. Black and white morals and a lack of nuance in early understanding of ethics creates a dichotomy where autistic people who take things very literally will only trust science and their own experiences until the point that they are proven wrong, and then are put in positions of direct opposition to those of faith at an early age because we seek clear and concise answers even though nothing is clear in actuality.
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Name	Kaisi rolfe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Any research in to neuro diversity is needed
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Name	Karen
Demographic	Family member of an autistic individual; Other
Response
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Name	Karen Ashikeh, Registered Nurse- Health Adviser
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	1.Support groups for parents and family- when should they occur. 2.Dental care training and Pediatrician training and webinars or CE credits for dentists and pediatricians and staff that care for these children. 3. Review of electronic learning systems to recommend ways for users to express feelings - happiness, sadness, anxiety, fear, worry about self or others, aloneness and feeling there are too many people to cope with. Also identifier of name and address, phone # Ideally, Small, hand-held devices or necklace-type units should accompany the child where they go so they can communicate clearly with those around them, at any time. A good device to point to when encountering police, if ever stopped. Police need to be trained to recognize such devices as identifiers for those with autism or speech or other disorders and how to use them to interact with that person to assist them.
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Name	Karen Barrett, Barrett Consulting
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Empirical testing as per atpeaceparents.com and other organizations that continue to log results such as behaviorinterventionsinc
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Name	Karen Gee
Demographic	Family member of an autistic individual
Response	Identify why an increase in autism.
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Name	Karen Kaye, Executive Director, Foundation for Autism Support and Training (FAST)
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Much research is needed on medications without side effects. Risperdal and Abilify are non-starters in my opinion, but everyone insists on starting trials with these for autism.
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Name	Karen P, Special Educator/Autism Consultant/BCBA
Demographic	Service provider, health provider, or educator
Response	How to accurately identify and treat co-occurring conditions
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Name	Karen Scallan, Parent of Individual (22yo) with Autism and Down syndrome
Demographic	Family member of an autistic individual
Response	Lack of training and care in schools around behavior, communication, interaction in general. The research is there on what to do, but no one is researching just how bad the situation is and it is significantly bad.
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Name	Karen Weigle, National Center for START Services and Chattanooga Autism Center
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	More research on all areas discussed is needed. We need to include people with autism in research design and implementation to ensure that what we research is important to the people we are "researching." People with autism should guide the research questions and design, as well as be asked to participate.
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Name	Karey
Demographic	Autistic individual; Family member of an autistic individual
Response	Research into PDA
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Name	Kari Johnson
Demographic	Autistic individual
Response	Autistic burnout.
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Name	Kari Knutson, PathPoint
Demographic	Service provider, health provider, or educator
Response	I would like to comment on the autism research possibilities. I work with a mix of disabilities and autism is one. I feel that the number one piece of the puzzle that needs to be addressed for autism is communication. As professionals, we need to look into ways to assist people with autism to communicate with who and what works for them. My program is vocational and a simple "good morning" can be triggering for some people. The multi layers of others voices and sounds, make what seems to us a simple action, a sometimes horrific moment for those with autism. In addition, finding jobs that meet the communication barriers and needs of people with autism is in high demand! Thank you for reaching out to those of us who work with people with disabilities.
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Name	Kari Schaer
Demographic	Family member of an autistic individual
Response	Medication for PDA autistic children, appropriate and effective therapy for PDA autistic children, defining PDA vs DMDD in the DSM 6, determining if PDA is stand alone or a condition within Autism or a condition within ADHD.
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Name	Karoline Moxham
Demographic	Family member of an autistic individual
Response
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Name	Kat
Demographic	Family member of an autistic individual
Response
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Name	Kate D
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Genetic testing, physical testing, researching the link with hypermobility and POTS
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Name	Katelyn
Demographic	Autistic individual
Response
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Name	Kathleen Meyer
Demographic	Family member of an autistic individual
Response	Research desperately needs to include the whole spectrum of autism. Currently about a third are left out of consideration for their needs or even research about the natural course of their lives and function. The co-occurring condition is severe disability that threatens safety and prevents true independence. To pose this as co-occurring conditions may be helpful for a researcher designing questions but feels far from the reality of our high needs population. DD/IDD is believed to be 20 to 40 percent of the homeless population. Many autistics are evicted because of their autistic issues. The incidence of IDD/ DD in the prison population is approximately twice the incidence in the general population. Research in housing issues and incarceration areas would be helpful as well.
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Name	Kathleen Walker
Demographic	Autistic individual
Response	I would like to see more research about -sleep: identifying better ways to deal with insomnia or other sleep issues -mental health: identifying the most effective approaches for supporting autistic people who are struggling with trauma, anxiety, depression, or suicidal ideation -chronic illnesses: identifying ways that doctors can support autistic people who struggle to manage chronic illnesses like diabetes because of sensory issues
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Name	Katie
Demographic	Autistic individual
Response	Research on how Autism and ADHD present when someone has both. It can look like one compensates for the other and then we get missed until adulthood. Also more research on women/girls, trans, and non binary people. I think this would help a lot of us be noticed sooner than someone who only has autism. Also PTSD and autism occurring together.
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Name	Katie
Demographic	Autistic individual; Family member of an autistic individual
Response	What treatments are actually effective, long-term, for *holistic* betterment (not reduction of a single symptom)? How does the diagnostic model (and poorly-educated doctors) fail people with complex needs? How many false or secondary diagnoses do people receive before they get to a label and treatment that actually helps? How does autism change mental health crisis signs? What does a manic episode look like for someone with an autistic brain? What assessment questions need to be altered, so doctors get a clear picture of what is going on?
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Name	Katie DuPree-Magat
Demographic	Autistic individual; Family member of an autistic individual
Response	Continue research on autistic presentation differences in adults. women and people of color compared to affluent, white little boys. Less abusive treatment alternatives to ABA. Continue research on overlap between ASD and ADHD.
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Name	Katya Siddall-Cipolla
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Research on adults, specifically those assigned female at birth, and inclusion of autistic parents in studies about children. We know nothing about autism and perimenopause, for example, but this is one of the hardest times for women with mental health and co-occurring conditions.
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Name	Kay
Demographic	Autistic individual; Family member of an autistic individual
Response	I feel that reading different challenges faced by autistic individuals from reliable sources and how to help others with ASD can help.
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Name	Kayla Weant
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Updating the diagnostic criteria to better include girls, women, non-binary, and people of color. Look into the lasting harm of ABA therapy on the mental health of autistic individuals.
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Name	Kayn L
Demographic	Autistic individual
Response	Research into comorbid biological and psychological conditions unrelated to a biological or psychological cause for autism
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Name	Kd
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	How these conditions overlap, how the symptoms differ, rates of concurrence, if there’s a genetic basis, difference between and alignment of autism and genetic conditions that mirror autism
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Name	Kelley, parent
Demographic	Family member of an autistic individual
Response	How the labeling of the disability affects the outcome and services. With everything being lumped under autism, research and services tend to lump very different disabilities together.
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Name	Kelli
Demographic	Autistic individual
Response	More research is needed on women/girls with autism and co-occuring conditions. Also how not getting proper support early in life leads to these issues in adulthood. More on genetics and generational trauma and how that plays into it. How pregnancy affects autistic brains. And parenting as an autistic individual. And more psych training on how to support autistic people in therapy as we don't respond to same methods as well it seems.
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Name	Kelly
Demographic	Autistic individual; Family member of an autistic individual
Response	Research on the efficacy of assigning social workers to “functioning” autistic adults. I feel everything so intensely that it can become overwhelming. I just need someone to metaphorically hold my hand sometimes.
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Name	Kelly Howard
Demographic	Family member of an autistic individual
Response	As the mother of a nonverbal autistic child with a developmental delay, I'm actually not sure what needs to be done on a research level. I can tell you that as far as the medical community is concerned, including therapists, they need to listen to the parents more and stop throwing out the excuse "oh that's just autism."
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Name	Kelly King
Demographic	Family member of an autistic individual
Response	Much - with a focus on severe population. Physical lung differences; are there other physical differences Documented microbiome differences, how can these be addressed? Treating intense behaviors in effective ways. Medication research. Causal factors for common co-morbidities and how to treat effectively. ACEs, trauma and effective treatment (particularly to the non verbal) Investigative research, including surveys of staff, residents, and families around abuse and neglect, etc. in residential facilities.
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Name	Kelly L. Nimtz-Rusch, DNP, RN, The Autism Collective
Demographic	Other
Response	There is a need to identify individual autism genotypes that could assist in predicting symptom subtypes. This could inform targeted interventions for specific symptoms that much earlier.
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Name	Kelly Tabeling
Demographic	Family member of an autistic individual
Response	Pathological Demand Avoidance is an area that desperately needs further research. We have had a very hard time finding a provider who understands the unique profile of PDA, which makes it hard to get an autism diagnosis and the necessary services.
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Name	Ken
Demographic	Autistic individual
Response	Greater understanding of the social interpretation which induces social anxiety. Anxiety can be very debilitating and physically compromising. Many autistic's suffer from extreme sensitivities that can result in unhealthy lifestyles such as food, etc. It can also prevent some health related hygiene activities. Social anxieties can prevent autistics from visiting health care services, etc.In my case, social anxiety is my greatest issue. If left alone, I can easily and successfully take care of myself. I sent my primary care physician a letter describing my autism. She actually read the letter and changed her interaction with me to prevent traumatic social anxiety resulting in a very calm, successful appointment. Basically, what's needed is more understanding and acceptance. It is so often considered that if someone is "different" they are defective and need "help". Typically that help, however actually makes things worse - confusing the helping professional.
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Name	Kendahl Damashek
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research on Pathological Demand Avoidance (see preliminary studies by Noelle Carlozzi at University of Michigan). It needs to be studied so it can be recognized officially as a disability and its parameters defined--for both internalizing and externalizing PDAers. Additional research also needs to be funded in Polyvagal Theory (Stephen Porges), which explains the suspected root cause of PDA. Research on gestalt language processing would also be incredibly helpful.
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Name	Kenneth Kaye
Demographic	Autistic individual
Response	Research about the origins of, treatment for (which doesn't indicate medication alone), and accommodations for autism that doesn't have any preconceived notions inherent in the research about age, race, gender, or other factors and treats it like a first-class issue that deserves the full attention and respect of the researchers involved.
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Name	Kerri Greig
Demographic	Autistic individual; Family member of an autistic individual
Response	More surveys like this I imagine. Actually speaking with autistics who have the lived experience, and listening to all of our voices. It's only the people with lived experience that can be referred to as the real experts.
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Name	Kerry
Demographic	Family member of an autistic individual
Response
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Name	Kerstin Powell
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The institutions are 10 years behind the current research. A robust implementation of a sensible standard of care would be one thing, using research already done and getting up to speed with best practices is potentially helpful. Also caregiver support and helping families afford therapies that are salient would be nice.
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Name	Kevin Gerrity, Project Beacon TX
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	There is all kind of medical and therapeutic research that can be done to help address/improve these conditions. Unfortunately, with autism, there is rarely "one answer" given the wide variety of issues and support levels in this community. At the federal level there should be a willingness to listen to parents and self advocates from across the spectrum to understand priorities and then work with private industry to launch some of these higher priority research opportunities.
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Name	Kevin Ryle, Association of University Centers on Disabilities and the Autism Society of America
Demographic	Representative of advocacy organization
Response	•Psychotherapy is not often available, nor is it effective when attempted. Counselors are taught to develop a therapeutic alliance through social cues, open-ended questioning, and reciprocal dialogue. This maybe a significant challenge for people with Autism. Identifying effective psychotherapeutic techniques is an important area of research, as is counselor education about Autism and effective therapeutic strategies. •More research into sexual and gender identity in the Autism community is needed to support health. •The needs of females diagnosed with Autism need to be better identified and understood. •Employment-related research, such as how to make the workplace “Autism-friendly.” •Strategies for effective transitions into adulthood, especially in rural areas needs more research. Research into using modern technology to better facilitate employment, housing, education, etc. – especially technologies and strategies developed after the pandemic – should be a priority. •A national task force of experienced clinicians should be created to develop a Gold Standard protocol for diagnosis. •A new intervention research network focused on communication needs, in particular, alternative augmentative communication (AAC) should be created. 25-30% of individuals are non-speaking or minimally-speaking. Individuals need access to communication assistants and/or devices. Additional research to develop evidence-based AAC devices and methods.
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Name	Keyunna Harris, Caregiver
Demographic	Family member of an autistic individual
Response	Patterns in learning for non-speaking high-support needs autistics. Research on how to teach and empower high support needs autistics to hold meaningful and influential careers. In addition, research on medical deficits and biomedical research on the cause and ways to alleviate some of the debilitating autism symptoms.
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Name	Khalila
Demographic	Autistic individual
Response	Research on ADHD-autism connection, and autism-EDS-POTS-MCAS connections.
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Name	Kia Green, Emerge, Inc.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More research regarding the GI sensitivities of those with Autism may help with understanding a lot about other co-occurring conditions.
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Name	Kris Guin, Queerability
Demographic	Autistic individual; Representative of advocacy organization
Response	More research is needed into how to treat diabetes in Autistic people.
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Name	Kristen Brake
Demographic	Family member of an autistic individual
Response	Teachers need to study/acquire specialties in order to teach our students. For example: Wilson reading certifications, learn how to teach math to kids with dev delays and autism…/ education needs to be researched…. No one knows how to teach our kids. They just want to put them in self contained classrooms and teach them life skills which they can learn at home. They should be going to school to learn how to read write and add and subtract.
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Name	Kristin Botwinick
Demographic	Family member of an autistic individual
Response	Interested in interventions to assist in weight loss/excessive eating. Traditional interventions e.g. CBT, hypnosis, psychotherapy seem to elude my son due to his executive functioning issues and intellectual disability
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Name	Kristin H.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More research into the G.I. system, and its effects on autism
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Name	Kristina Funk
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	How to support families and providers with education.
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Name	Kristina Tober, parent
Demographic	Family member of an autistic individual
Response	We need to understand how the lack of acknowledgement around profound autism and deference for neurodiversity is impacting families, funding and supports for these individuals
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Name	Kristoff Furgiuele-Weis
Demographic	Autistic individual
Response
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Name	Krystin LaBarge
Demographic	Autistic individual; Family member of an autistic individual
Response	The research to address co occurring conditions needs to include autistics who have been historically understudied and dismissed from the data- individuals raised as female, people of color, socioeconomically disadvantaged, and those in the LGBT+ community. We need access to adequate and accurate assessments, resources to assist in our day to day lives, readily available and educated medical personnel, neuroaffirming mental health guidance, accessible education, and employment.
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Name	Kyla
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA research
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Name	Kylie
Demographic	Family member of an autistic individual
Response	More research needs to go in to the different profiles of autism so they can be more understood by the people around them. For example teachers and support staff.
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Name	Kym Pettitt
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	How to improve medical care
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Name	L. Void
Demographic	Autistic individual
Response	-What’s the deal with autism & connective tissue disorders -Why is it so hard to get special assistance? If I’m disabled to the point that I can’t clean, health insurance could subsidize a weekly house keeping service. Insurance could cover quality of life items like noise canceling headphones, weighted blankets, sensor deprivation tank sessions. -Why is it so hard to get diagnosed with autism as an adult?
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Laura
Demographic	Autistic individual
Response	Autistic people need continued research into psychedelic-assisted therapies for trauma. As new modalities such as MDMA come online, autistic people need to be included in the first wave of patients. Trauma drives our suicidality the same way it drives the suicidality of combat veterans. It's the same, and it deserves and needs the same focus of treatment.
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response	There is currently almost zero support for parents of autistic kids with high support needs. We struggle to maintain a job while handling insanely high stress at home due to our high support needs autistic son. We can’t afford or even find adequate childcare for our autistic son. I am forced to stay home to care for him and my home is essentially a prison because I can’t go anywhere or do anything due to my son’s challenges. It is deeply depressing and miserable
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Name	Laura Cosgriff, Lakewood
Demographic	Family member of an autistic individual
Response	I would say more services and supports are needed in the areas of occupational therapy, speech therapy, physical therapy, and executive functioning in all these areas. OT and speech are the areas that have been the most successful for my child. Not sure if more research is needed. If you ask any parent, the needs are pretty well understood. The problem is only certain services are supported by insurance or by public agencies. If more research is needed to provide services to families and children, then those areas are the areas that are needed.
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Name	Laura Graham Holmes, Silberman School of Social Work, CUNY Hunter College
Demographic	Service provider, health provider, or educator; Researcher
Response	Although there is a lively online discourse about autism and chronic pain conditions, the research literature on pain, pain conditions, and autism is in its infancy. However, there is some evidence that chronic pain conditions are more prevalent among autistic people who hold other marginalized identities (e.g., women, gender diverse people, and those who are gay, lesbian, bisexual, or queer). Basic qualitative and quantitative research is needed to understand the prevalence, mechanisms, healthcare experiences, and potential interventions for chronic pain management among autistic people.
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Name	Laura Mansdorf, Mother of an Autistic Child
Demographic	Family member of an autistic individual
Response	I think there needs to be research done to see how to reduce the amount of distraction in the mind of a person with autism and adhd. How medicines metabolize in an autistic person's system vs. a neurotypical person. More in depth research into what causes the sensory overload, how the brain reacts, and how to reduce the issues associated with overwhelm. Also research on how to best educate those who have the most support needs. I am a firm believer in "support needs" over "function." Had I just left my daughter without the most support possible, she'd be functioning at a much lower capacity than she is now. How do we bring the highest quality therapy to the most children possible? How do we ensure that its being done correctly?
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Name	Laura Mewbourn
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Laura Saenz
Demographic	Autistic individual; Family member of an autistic individual
Response	The most detailed research right now is on Tik Tok. Yes, I read medical journals and desk references. But only Kimberly102347 has mapped out the co-morbidities and the triggers and deficits we need tested regularly by MDs. Her research answers all of these questions. And we need to get folate out of our food supply.
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Name	Laura Stoddart
Demographic	Family member of an autistic individual
Response	PDA recognised in the DSM-V as a nervous system disability that is not under the control of the child. That the cumulative nature of stored stress has a debilitating impact on the child’s ability to access both basic and secondary needs which is beyond their control. Activation of the threat response needs to be viewed as a panic attack not a behavioural choice that can be conditioned. ABA therapy is highly damaging to the PDA child.
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Name	Laura thimen, Parent
Demographic	Family member of an autistic individual
Response	Medicines to reduce aggression, stomach issues,
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual
Response	There needs to be more research that focuses on autistic adults, since a lot of autism research tends to focus on children or on potential causes of autism. I think that research that looks at autism alongside mental health conditions such as OCD or PTSD would be hugely beneficial, along with research that goes beyond prevalence or causality and has a more long-term scope, such as managing chronic co-occurring physical health conditions or improving general quality of life for autistic adults across all levels.
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research based on autistic people's experiences. Most research is based off caregiver observations, so they aren't inclusive of how the autistic person feels or experiences the world (aka ABA is harmful to autistic people, but caregivers love it). Understanding autistic communication styles.
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Name	Lauren Agoratus, SPAN/Family Voices NJ
Demographic	Representative of advocacy organization
Response	Research in autism continues to be essential due to increasing prevalence rates. We would suggest that more research be done on the comorbid conditions listed above. Note: Additional research should not take funds away from ensuring appropriate services and supports are available to people with autism and their families.
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Name	Lauren Dehler
Demographic	Autistic individual; Service provider, health provider, or educator
Response	So much! Include Autistic people in designing research, focus on PDA, focus on intersectionality of those with marginalized identities, focus on including medium and high support needs folks in research, gender and racial bias in research and treatments, ableism in fields of psychiatry and psychology.
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Name	Leah Bennett
Demographic	Family member of an autistic individual
Response
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Name	Leah Goeres, Citizen
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Finding genetic markers for joint hypermobility. Understanding the pathogenesis of joint hypermobility and postural-orthostatic hypotension. Research describing the kind of supports hEDS people need to remain in the workforce. There is no specialty that "owns" hypermobility disorders in the same way the endocrinologists "own" diabetes or Rheumatologists own Rheumatic diseases. Research needs to be done around what training practitioners need to be able to treat and manage these conditions. Research describing the economic costs of untreated or under-managed hypermobility disorders and postural orthostatic tachycardia syndrome. Guidelines need to be developed for hypermobility disorders and dysautonomic disorders.
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Name	Leanne Maidment
Demographic	Autistic individual; Family member of an autistic individual
Response	I believe PDA needs to be more widely recognised and diagnosed and research is needed into how this differs from "typical" ASD, how it presents, strategies etc. I also believe that although ADHD and ASD are understood as standalone conditions, more research is needed into what it means when they are co-occurring.
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Name	Leanne-Claire Civiletti
Demographic	Autistic individual; Other
Response	Research ? I wish that more education and awareness was made to the medical community. Ehlers Danlos Syndrome and Autism isn’t rare. I personally know over 18 people in my city that are diagnosed with both and are struggling to get appropriate medical care.
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Name	Lee S.
Demographic	Autistic individual
Response	There is a wide gap between neurotypical and divergent individuals mostly because both of these conditions are life-long and are nearly impossible to comprehend without experiencing them yourself. Research would be useful in pinpointing the specifics that each of these types of people has in variance and developing simple mechanisms to mirror more easily sustainable traits.
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Name	Leeann
Demographic	Autistic individual; Family member of an autistic individual
Response	There needs to be more research on autistic women and the differences associated between male and female autism. Autistic women are very often overlooked or misdiagnosed due to the similarities between previously thought "female mood disorders" such as BPD and bipolar disorder. In turn, we are misguided or medicated for an ailment we do not have.
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Name	Leigh Powell, NCSA TN Chapter
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	What I do know is that the bigger issue is that no one will step up to the table to address viable appropriate options for those with lifelong high acuity needs. When Tennessee's most fragile, vulnerable, and needy are ending up being warehoused for months or years in hospitals, mental institutions, out of state placements, or jail it is clear that different options are needed. Recently, Jordan Allen of DIDD said that solutions for the high acuity cases were "unsolvable." I don't believe that is true. Tennessee needs to involve the families of those with high acuity to help design appropriate housing and support systems for them.
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Name	Lekeisha Williams
Demographic	Family member of an autistic individual
Response	Self harm
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Name	Lesley
Demographic	Family member of an autistic individual
Response	More education for our schools...anything that has to do with autism needs to be highly researched. 1 and 30 something kids is an epidemic
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Name	Leslie
Demographic	Autistic individual
Response	People that are nonjudgmental, fair treatment.
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Name	Leslie Lussier, Parent and Guardian
Demographic	Family member of an autistic individual
Response	We need to understand underlying brain disorder that causes autism. I suspect it’s related to the gut. We need to focus on the profound autism population to address these most severe needs of these individuals and their families. People with profound autism suffer from physical and intellectual disability and require 24/7 care which is devastating to the family. When families are no longer able to care for these people they require tremendous resources for care that lasts many decades. It’s a huge cost yo the system that we need to address as the surge in population begins to age out of home care.
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Name	Leslie Welch, parent of adult with autism
Demographic	Family member of an autistic individual
Response	Care Training medications really everything
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Name	letitia smith
Demographic	Autistic individual; Family member of an autistic individual
Response	in particular need more understanding about PDA. it is becoming a more common diagnosis but understanding still very low, especially about how it different from autism
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Name	Lewese, Child with ASD with PDA profile
Demographic	Family member of an autistic individual
Response	Not just autistic children, but those with other barely recognised forms such as PDA, so it is finally recognised as a very difficult condition to manage. It's great ASD components added to schools, but not necessarily ok for children with PDA. There needs to be PDA programs as well, as it is a special way of managing them .
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Name	Lilja
Demographic	Autistic individual; Family member of an autistic individual
Response	PDA needs to be recognized in the USA. I believe most cases of PDA in the US are misdiagnosed as ODD. We badly need more studies in this area. Children are being punished for the way their brains and nervous systems react to a perceived threat. It is cruel and unfair. Both to the children (and adults) that deal with this, and the parents that are desperate to help them - like me.
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Name	Linda
Demographic	Family member of an autistic individual
Response	Other research should include what services can be provided to assist those with autism
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Name	Linda , parent of adult with autism
Demographic	Family member of an autistic individual
Response	The focus now needs to be on motor issues and apraxia. Not just gross motor ability but fine motor including ability to speak. We need to understand what the issues are and figure out the best ways to teach people with autism other ways to communicate using AAC, including spelling out words.
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Name	Linda Gone , Parent
Demographic	Family member of an autistic individual
Response	There’s no research in the adult population
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Name	Linda Jones
Demographic	Family member of an autistic individual
Response	Research that would determine effective treatments and strategies for managing PDA is needed to provide children and families the relief that we need. Also, research that proves the existence and develops diagnostic criteria for PDA is absolutely critical. Without legitimizing PDA, there is no real way for my daughter to receive treatment and support for her condition which looks very different from typical autism.
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Name	Linda Kline, DDA SDS Family As Staff Direct Support Staff
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Well, number 1 the schools need to put Music Therapy in the school setting and number 2 the schools need to have Recreation Therapy and eating therapy. My son had all of 3 of those therapies in the school setting from 1990-1996 and when I moved back to Maryland and was told he couldn't have Music or Recreation Therapy in the school system I was crushed, thankfully Huntington Autism Research Institute and Ewing School in Marietta Ohio trained all of us parents to perform these 2 therapies, so my son was still getting it even though the state of Maryland is way behind Ohio. Put that [profanity redacted] in the schools for our Autistics the way Ohio had it.
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Name	Linda Luxenberg, Parent and Professional
Demographic	Family member of an autistic individual
Response	Vermont is at the bottom of the learning curve; yet, boasts its philosophy is superior. When families express concerns the VT system, rather than addressing the systemic failures, retaliates against parents by taking over guardianship. States lacking expertise should send not receive Fed funds. Money talks.
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Name	Linda Schepis
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Linda, Parent
Demographic	Family member of an autistic individual
Response	We need research In The causes and treatments for autism and their co occuring conditions so we can improve their health and quality of life.
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Name	Lisa
Demographic	Autistic individual
Response	Hearing from the personal experiences of those who have autism from different settings and demographics
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Name	Lisa Graf
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	I think a medical records study looking at different rates of people with autism, people with family members with autism and people without to identify what truly is common.
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Name	Lisa Jeanne Geaf, 2023 LEND fellow
Demographic	Autistic individual, Family member of an autistic individual, Researcher, Representative of advocacy organization
Response	There is too much focus on changing autistic people and not enough on changing environments and expectations to make relationships and spaces more welcoming and accepting.
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Name	Liv
Demographic	Autistic individual; Family member of an autistic individual
Response	how to provide free healthcare to all
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Name	Liz
Demographic	Family member of an autistic individual
Response
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Name	Liz Martineau, Nashoba Learning Group
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	A top research priority for our severe/profound autism population is the alleviation of distressing and too-often fatal behaviors of aggression, self-injury, property destruction, pica, and elopement. There is a desperate need for more efficacious medical and behavioral treatments, and of course more understanding of routes for prevention. We need more research on: psychiatric medications; and behavioral approaches. Much more emphasis must be placed on the needs of adults who often lack access to appropriate care and whose dangerous behaviors cause enormous burdens to families and care providers.
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Name	LizC12, Self
Demographic	Autistic individual
Response	Definitely more research on women and girls. Testing for these things earlier. Believing the things a patient is saying, not gaslighting them or making them think they're just crazy.... I was a late diagnosed autistic female. If I had earlier testing, doctors who listened sooner (and parents who believed in these things), I might not be as bad as I feel I am today.
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Name	Lori Hogenkamp, Center for Adaptive Stress
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	To enhance research on co-occurring conditions in autistic people, it's essential to integrate complexity and systems models. This approach would focus on the unique manifestations of conditions across different neurotypes, rooted in their distinct neurobiological configurations. Research should particularly explore non-linear patterns and stress mechanisms, understanding conditions like depression or anxiety as integral components of the neurodiversity spectrum, specific to the neurotype’s adaptive responses. Reframing the narrative around these conditions is pivotal. Instead of viewing them as deficiencies, we should consider them as part of a spectrum of adaptive-maladaptive trade-offs. This perspective aligns with principles of complexity, evolution, and neurodiversity, paving the way for a transformative model in medicine. Here, conditions are recognized as inclusive and evolutionary adaptations. Further, studies should delve into individualized health concepts like 'emergent allostasis', investigating neurotype-specific stress responses. By viewing co-occurring conditions as interconnected elements within complex adaptive systems, we can gain a deeper understanding of neurodiversity and its implications for health. This approach not only promises targeted interventions but also informs policies that support a more inclusive and nuanced healthcare system.
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Name	Lori, mother of 32 yo with autism
Demographic	Family member of an autistic individual
Response	So much research needs to be done to help health and human services providers better understand that, although a person with autism may seem to be able to function independently, often there are areas of gray where their independent abilities fall short. Along this line, research that really focuses on the multitude of ways a person with autism may present themselves both to people they know and people they don't know. Any research would be good - oh yes, and, really important to me is research on adults with autism. I am so tired of reading about all the new research and practices for infants and children that it seems like people forget that children with autism grow up to be adults with autism.
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Name	Louis
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	There needs to be more research from the perspective of autistic individuals, including opportunities and grants for autistic researchers and specialists who have a particular interest in autism. I see a major need for more research into treatments of co-occurring disorders, instead of individual disorders. Often, studies are separated into autism as a condition, or a co-occurring condition as a condition of the study. This ignores any synergistic effects of having both and how they affect one another. For example, major attention needs to be drawn to how autistic individuals communicate with care providers and how that affects their treatment. Also needs to be more research on adults, with attention paid to diversity as currently much of the research is fairly homogeneous in its sample.
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Name	Louise
Demographic	Autistic individual; Family member of an autistic individual
Response	Gathering the information from healthcare professionals about their preconceived ideas about what autism is and how it presents. These assumptions and preconceptions need to be challenged.
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Name	Luca Hardt
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The hoops one must go through to obtain a research position are incredibly difficult to overcome for many autistic people. Support in all levels of education for people who are neurodivergent could lead to better research. Autism research done by neurotypicals often borders on hatefulness. Starting with autistic researchers will help guide research on autism in positive directions. No one knows our needs better than us. Research on supports needed by otherwise employable autistic adults needs to be furthered. For many positions, there is no reason that working hours couldn’t be more flexible or for employees to be constantly plugged in and ready to chat. These expectations have me in constant fight-or-flight. Even in a job I enjoyed and felt supported in, my office hours became closed-door spiraling on the floor while waiting for an approaching meeting. Positions that promise autonomy still keep tabs on you during working hours. These positions are unobtainable for the autistic people who weren’t able to go to college. There are many brilliant minds not being put to work because of the antiquated expectations of work. Also further research into the outcomes of ABA therapy needs to be funded, as it is dog training for disabled children and abusive. It leads to adults with crippling PDA profiles because it is abusive. It is militant abuse to force children with autism to ignore their needs for the comfort of the neurotypical people around them.
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Name	Lynn Cass
Demographic	Family member of an autistic individual
Response	I think the best research you can do is to actually listen to families like ours who live this reality every day. We can certainly tell you what is needed to improve the quality of life for our family members.
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Name	M
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	barriers to accommodations
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Name	Mabel Thomas
Demographic	Family member of an autistic individual
Response	PDA as a nervous system disability and its supports
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Name	Maci Barbour
Demographic	Autistic individual
Response	Genetic links to comorbidities (eg: Ehlers-Danlos Syndrome and Autism link)
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Name	Madeline Lodge
Demographic	Autistic individual
Response	We need to find ways to manufacture ADHD medication cheaply and quickly so that everyone who needs medication can readily get it.
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Name	Madison
Demographic	Autistic individual
Response	There needs to be a deep dive into co-occuring issues for female autistics - in particular PMDD. There is a 92% comorbidity rate, but little to no information or support. I think research needs to be done to see how ovulation impacts those with autism. There also needs to be research on emotional regulation and how we can assist those who are constantly living outside of their threshold.
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Name	Maegan Hayes, Social Science Specialist
Demographic	Autistic individual; Family member of an autistic individual
Response	Is there representation provided at every VA? Also, does every VA understanding neurodivergent and co-occurring disorders? This is important, as often times the best employees are viewed as lazy or unmotivated.
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Name	Maeve Sherry, Pan-End-It!
Demographic	Autistic individual
Response	The link between autism and susceptibility to long covid and covid mortality
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Name	mags, diagnosed autistic
Demographic	Autistic individual
Response	Please read Kimberly Kitzerow's work. I'd stake my like on her work helping understand underlying facets of the Autistic condition.
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Name	Maija Vance
Demographic	Family member of an autistic individual
Response	More research is needed into PDA so that professionals and families can understand the root cause of the behaviors in PDA kids. Behavioral approaches actually cause more harm and led my kid into nervous system burnout.
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Name	Mara LaViola
Demographic	Family member of an autistic individual
Response	Look at the co-morbidity of autism and cortical/cerebral vision impairment and other brain based visual impairments. Many autistic individuals are losing out to a life time of an education because of these missed diagnoses. It is said that 80% of learning is what we gain through our sight through incidental learning. Autistics with vision impairments have no access to the visual world if their CVI is not addressed. Autism itself leads to diminished access to incidental learning, so I would argue that much like the educational loss associated with a dual sensory loss such as DeafBlindness has a multiplicative effect on learning, adding autism into the mix only exacerbates the lack of learning opportunities and the appropriate explicit instruction needed to address these functional losses of vision and hearing.
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Name	Marcella Schieffelin, Member Colorado Developmental Disabilities Council
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Since I am not a physician or medical researcher, I’m not sure how to answer this question other than to review responses and analyze the data to create a plan of action.
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Name	Maresa
Demographic	Family member of an autistic individual
Response	Sensory processing difficulties and mental health issues, including anxiety and depression.
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Name	Mari Savickis
Demographic	Family member of an autistic individual
Response	Believe it would be highly beneficial to study alternative medicine to establish an evidence base. Example - I noticed years ago that my son who has both autism and ADHD had increased lucidity when he had a fever. After doing some research I learned that this occurs with other kids with autism. Also turns out there has been some study of this involving broccoli sprouts. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5672987/ But, my experience with traditional doctors (ie Kennedy Krieger) is they acknowledge but have zero advice on how much to take of a supplement. Studying more alternative therapies and educating clinicians about recommendations would be very helpful. My son takes medication and receives ABA which has helped a lot but I am always looking for what else I can do for him. Frankly, most clinicians I've encountered seem ill-informed about anything beyond this. I also strongly support investing more in functional medicine. Very hard to find these practitioners.
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Name	Maria Garritt
Demographic	Service provider, health provider, or educator
Response	1. Educating individuals on their own condition of Autism and what to expect for others. 2. Educating public in general about the characteristic of Autism 3. How to build self-esteem in the population in the Autistic spectrum.
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Name	Maria Maiorano
Demographic	Service provider, health provider, or educator
Response	Continuing to help us understand more about what in the brain is wired differently, and if there are any preventative ways we can address autism through possible vaccines, medications and holistic supplements etc. and/or continuing to understand what could be causing autism. Also, experienced doctors and teachers who help treat people with autism should in some way work together to understand different perspectives. This may help to find better ways to diagnose, educate and treat patients. Also ask better questions, take specific data, and/or prescribe better medications to treat individuals with autism . I also believe that more affordable brain scans should be performed. I do understand that this does create challenges for some individuals, but it is necessary in our research to find ways so that we can also see what the brain looks like, and where the deficiencies are present. Understanding more about the brain we can also holistically help through vitamins, healthy foods etc... Taking medication and/or supplements create many challenges. Continued research to help with medications in liquid and or chewable forms that can be easily placed in foods or have a good taste to them may help ease the burden for some. In my opinion , doctors who do holistic research and medical doctors coming together for internships in a balanced way to address issues may help as well. Then finding ways for insurance companies to cover costs would be great too.
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Name	Mariana Romano
Demographic	Family member of an autistic individual; Other
Response	It is important to look at the links between the co-occurring conditions, both mentally and physically. Is there there an inherent link between ASD and the co-occurring conditions caused by biological reasons only, or does the environment in which ASD individuals are expected to navigate trigger certain co-occurring conditions. How does Pathological Demand Avoidance fit into these co-occurring conditions? How can we better serve these individuals to have fulfilling lives as integral parts of our communities?
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Name	Mark Byam
Demographic	Other
Response
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Name	Marnie Morneault, University of Maine Center for Community Inclusion and Disability Studies
Demographic	Service provider, health provider, or educator
Response	Research should be around supporting professionals to know how to separate each condition, how it is affecting the person, how to support the needs both separately and collectively.
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Name	Martha Gabler, Mother and Legal Guardian of nonverbal adult son with severe autism
Demographic	Family member of an autistic individual
Response	Please see the excellent position statement below developed by the National Council on Severe Autism: NCSA, “NCSA Position Statement on the Need for Innovative Research.” https://www.ncsautism.org/innovative-research. Accessed January 10, 2024. “NCSA Position Statement on the Need for Innovative Research In spite of considerable investments in research, a decreasing proportion of autism studies focus on the severe end of the spectrum. Profound impairments in communication and disruptive behaviors often preclude cooperation with necessary assessments and procedures. Meaningful accommodations must be developed and implemented to make autism research truly inclusive. The NCSA recommends that research intensify efforts in the following areas: • Medical and nonmedical interventions to address the needs of those affected by severe autism. • Comorbidities that frequently afflict those with severe autism, such as seizures, insomnia, mental illness, pica, anxiety, oppositional defiance, immune disorders, gastrointestinal distress, and others • Etiological factors, including gene-environment, epigenetic, and environmental factors • Prevalence and demographics, including better population data on qualitative characteristics, family characteristics, and birth year, to facilitate better policy and service planning
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Name	Mary
Demographic	Family member of an autistic individual
Response	Wish I knew, but wonder if more needs to be done with early onset dementia and autism and also if more needs to be done to not label folks with dementia as schizoaffective.
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Name	Mary Jane Reis, Parent
Demographic	Family member of an autistic individual
Response	Evidence-based sex and relationship education might help alleviate feelings of aloneness and co-occurring depression. There are many social skills programs for kids, but very few resources for adults seeking safe, fulfulling adult relationships, including partners. Harvard is test driving an adult relationship program but it's a one off. We need more of these types of programs.
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Name	Mary Jo Cooper, Bay Cove Human Services & Boston Architectural College
Demographic	Service provider, health provider, or educator; Other
Response	How do medical and social service systems interact How to look at a person, their environment, and co-occurring conditions in a holistic manner.
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Name	Matthew Janicki, National Task Group on Intellectual Disabilities and Dementia Practices
Demographic	Representative of advocacy organization
Response	We recommend a comprehensive and targeted program of research on the intersection between autism and dementia. Research should encompass epidemiology, presentation, assessment approaches, and disease trajectory for dementia in autistic individuals, considering variations in intellectual disability. This should include comparative studies with the general population and individuals with other intellectual and developmental disabilities. Research is also needed to enhance our understanding of the cognitive aging trajectory in individuals on the autism spectrum, factoring in variables such as intellectual functioning. Investigating prevalent types of dementia among individuals with autism is essential, acknowledging the varying degrees of risk associated with the underlying neuropathology of autistic behaviors. To improve research quality, methodological enhancements such as better research designs, larger sample sizes, and representation of diverse groups, including older adults, are crucial. Concrete recommendations include extending autism research from childhood through the lifespan, establishing a dedicated funding stream for research on aging adults with autism, and on the value of providing education for both paid and unpaid caregivers. Recognition of the disproportional funding for childhood versus adult autism research underscores the need for ongoing advocacy and resource allocation to meet the evolving needs of this population across their lifespan.
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Name	Matthew LeFluer , Vermont Legends of Cities And Towns
Demographic	Autistic individual; Researcher; Representative of advocacy organization
Response	First would be data research on marginalized communities communities of color that's also been left out of data research or knowledge systems we need more data of individuals on autism or autistic personnel live data so we can address the issues concerns conditions as soon as possible for everybody to meet their access need
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Name	Mattie Wentz
Demographic	Autistic individual
Response	Hypermobility/Ehlers-Danlos syndrome should be looked into
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Name	May
Demographic	Family member of an autistic individual
Response	How can we skill up their strength, for example at art or other mental skills?
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Name	Meg Collier
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Research specifically center Black children, gender queer children, in additional to research that focuses on specifically women and girls. There is some research that needs to be done to understand the relation between queer identity and Autism. I also believe research into how society can adapt to Autistics and not the other way around is much needed.
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Name	Megan
Demographic	Service provider, health provider, or educator
Response	Autism and mental health diagnoses. Better education systems to truly engage Autistic people in learning in the way they can.
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Name	Megan
Demographic	Family member of an autistic individual
Response	More research on PDA (Pathological Demand Avoidance) and helpful interventions. More research on types on useful if any probiotics.
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Name	Megan Arbour, PhD, CNM, CNE, Frontier Nursing University (and a mom)
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	auditory processing disorder pathological demand avoidance genetics for learning disabilities, auditory processing disorder, pathological demand avoidance as a presentation of autism
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Name	Megan McLaughlin
Demographic	Family member of an autistic individual; Researcher
Response	More research is needed on the causes of these conditions (intrinsic to autism or caused by society's response to autistics?) and above all on autism-specific treatments for physical and mental conditions and work-arounds for learning disabilities.
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Name	Megan Mitchell
Demographic	Autistic individual; Family member of an autistic individual
Response	How to best get the resources available to be actually accessible to autistic individuals. If you have autism and struggle with communication you can't just fill out an online application for assistance and then easily understand what happens from there. For people requesting disability, food stamps, TANF, Medicaid, etc, if you have autism, you should have access to an aid to help you navigate the system. Much like they already provide interpreters for people with hearing disabilities or that speak other languages, there should be aides for individuals with intellectual disabilities that can go on the calls and help explain things.
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Name	Megan Tomhave, PA-C
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Research on allistic communication that can be interpreted for autistic people: non-verbal communication, social hierarchy dynamics, etc. Research on the gut-brain axis: probiotics can help autistic people, autistic people can theoretically be diagnosed via fecal sample Research on profiles of autism, including pathological demand avoidance Research on sensory hyper- or hypo- sensitivities in interoception, proprioception, empathy, or psychic abilities Research on psychedelics and autism - apparently autistic urine contains more DMT Research on sociocultural influences on autism presentation (race, nationality, and gender) Indigenous perspectives on neurodivergence and autism Masking and autistic burnout What benefits neurodivergent communities - individualism vs collectivism I would love to help with any of these topics; I have a BA in neuroscience and I work with autistic patients as a physician assistant in a functional psychiatry clinic.
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Name	Meilin Zarnitsyna, Chicago Counseling Associates
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	More research into the Pathological Demand Avoidance (PDA) profile. Autistic people with this profile experience many traditional teaching/parenting/therapeutic techniques (as well as many techniques typically used for "general" autistic clients) as traumatic. Because of this, these people are at risk of being harmed (pushed into greater anxiety, aggressive/self-injurious/suicidal behavior, and reaching autistic burnout) by the very strategies intended to help them.
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Name	Mel Houser, M.D., All Brains Belong VT
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Autistic adults die on average by age 36-54.The main reasons for this are early heart disease and suicide. 69% of autistic adults have untreated health problems. 80% of Autistic adults struggle to access primary care. This is not a foregone conclusion. Research to explore pilot healthcare delivery systems, such as that modeled by All Brains Belong VT, can identify practical strategies for expanding healthcare access. For example, our medical practice uses universal design principles, and invites patients to co-create a customized healthcare experience, choosing from a range of options: environmental conditions, communication, sensory, and executive functioning supports. All of this was designed in consultation and collaboration with our patient community. Given that 85-97% of autistic people are dyspraxic, I would like to see research regarding motor coordination and sequencing differences; in particular, given the high rates of connective tissue disorders (ie, hypermobility spectrum disorders / hypermobile Ehlers-Danlos), the interactions of motor coordination, proprioceptive feedback and that which is contributed to by hypermobility. I think this has broad implications for autistic people’s quality of life.
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Name	Melanie Del Ponte
Demographic	Family member of an autistic individual
Response
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Name	melany hansen, parent
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	a knowledge database that when you put in conditions you can customize how to handle things.
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Name	Melissa
Demographic	Autistic individual; Family member of an autistic individual
Response	Have actual autistic people do the research on how to better our lives and not neurotypical people who have no frame of reference for how it is for us to exist everyday.
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Name	Melissa Foster
Demographic	Family member of an autistic individual; Other
Response
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Name	Melissa McKenzie
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	More research on pathological demand avoidance! Awareness of PDA is growing quickly with communities coming together to support individuals and families within this domain. We need a solid research base to assist in understanding the mechanisms driving such extreme demand avoidance and to also provide evidence based prevention and intervention strategies!
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Name	Melissa Sanchez
Demographic	Family member of an autistic individual; Other
Response	Woman need to be included in the research more! Especially adult woman.
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Name	MG Chappell
Demographic	Autistic individual; Family member of an autistic individual
Response	Autism in girls. More research is needed to identify it earlier in girls/women. I was not identified until an adult and it would have been extremely helpful to have that knowledge and supports years ago. The toll it took on my interpersonal relations including my marriage. The medical field seems to think it is a one size fits all for children and getting a diagnosis or for a physician to listen, especially in smaller, rural areas like where I reside.
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Name	Mia
Demographic	Autistic individual
Response	Researching what intrinsically motivates autistic people would be helpful, as I and most other autistics I know struggle a lot with motivation. I would love to see more research looking at people with both autism and ADHD and how to accommodate that dichotomy. Researching autism specifically in women and people of color (who's experiences are criminally under-researched) could prevent many co-occuring mental health conditions from developing due to misdiagnosis/no diagnosis.
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Name	Michael
Demographic	Autistic individual
Response	How ADHD and autism correlate, how anxiety impacts both. How our brains metabolize/process sugars. How unreasonable pressure to work causes depression and suicide among autistics.
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Name	Michael Confoy, parent of child on the spectrum
Demographic	Family member of an autistic individual
Response	How to treat all conditions together as a whole recognizing how they interact with each other
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Name	Michael Raney
Demographic	Autistic individual; Family member of an autistic individual
Response	Any and all research related to what is known in the UK as the Pathological Demand Avoidance profile.
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Name	Michael Rathbun
Demographic	Autistic individual
Response	We need an understanding of autism based on measurable structural departures from "typical" rather than largely subjective behavioural observations.
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Name	Michaela
Demographic	Autistic individual
Response	Self-diagnosis, especially in cases where there is no pathway for someone to get official diagnosis (such as a lack of insurance) or where it is unsafe to obtain an official Dx (such as states that legally discriminate based on mental illness; for example, in some states autistic people cannot adopt children).
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Name	Michelangelo molina
Demographic	Autistic individual
Response	Research is needed to delve into effective interventions, such as exploring how tailored therapies can alleviate the impact of co-occurring conditions like anxiety and depression in autistic individuals. Understanding the role of environmental factors and genetic predispositions in the manifestation of co-occurring conditions can guide personalized approaches to treatment. Additionally, investigating the long-term outcomes of individuals with specific combinations of co-occurring conditions, and assessing the efficacy of support systems, will contribute to a more nuanced and targeted approach in addressing the complex needs of autistic individuals
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Name	Michele Brady
Demographic	Family member of an autistic individual
Response	We need to research best practices for treatment of mental health conditions in the autistic population and train more providers of these services.
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Name	Michele Lappin, The Center for Exceptional Families
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	I think there needs to be more research on how co-occurring conditions can present differently in Autistic individuals compared to neurotypical individuals.
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Name	Michelle Goldberg
Demographic	Family member of an autistic individual
Response	What is causing the emotional breakdown and how to handle it.
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Name	Michelle Grochocinski
Demographic	Other
Response	Hypermobility and associated disorders, including hypermobile spectrum disorder (HSD) and Ehlers-Danlos Syndrome hypermobile type (hEDS), are not well understood. More research is needed to understand the link between hypermobility disorders and autism (as well as ADHD).
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Name	Michelle Harris
Demographic	Family member of an autistic individual
Response	Allow parents/family members to speak on behalf of our children. The disservice done by the "neurodivergent" community means research will have to focus on those autistics who are able to communicate either verbally or in some other way. What happens to the rest of the autistic community? My son has autism and cognitive impairment - he was turned away from research studies (NIH) for not being high functioning enough. This is not our preference - we would much prefer to allow him his own voice. There are NO services for him once he turns 21.
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Name	Michelle Jace
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Out of all the answers received for this question, please prioritize what autistic people with high support needs share. The voice of the autistic individual far outweighs the perspective of any caretaker, educator, parent, or practitioner. The biggest thing needed is more support for autistic adults particularly in the workplace and other areas of life like home ownership. Any research done should be to survey or interview the perspective of autistic adults on this, or autistic teens moving into adulthood. This research should not be done with the intent of providing autistic people with more training on how to exist in a non-disabled world, instead it should focus on ways to provide more disability support within the workforce, universities, and other adult community services. I think research on disability and houselessness needs to be done as well, specifically examining antecedents to a disabled individual becoming unhoused. Those findings should be used to propose programs and legislature to help support disabled individuals into adulthood.
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Name	Michelle Linn, Parent, Provider
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Autism needs to be diagnosed biologically, not through the subjective DSM-V. We need science to distinguish between autism and the co-occurring health conditions with specificity. As it stands, there really is no hard science to differentiate between autism, epilepsy, or any other psychiatric disorder. It's a subjective pile of nonsense. All research should be directed toward biological markers and the cause of autism. The fields of psychiatry, psychology, and neuroscience should not be involved in or directing autism research. Unfortunately, these professions have monopolized most what has been published on autism, which is why we have had such little progress during my son's lifetime (he is 29). We need a radical shift in the autism research strategy
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Name	Michelle OConnorTeklinski
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	How anxiety, OCD, ADHD can be diagnosed better and what treatments will be most effective.
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Name	Michelle Skigen, M. A.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research into how thin-slice judgements by neuro-normative people affect social, economic, and personal-interest access to opportunity and resources. Separation of various conditions that are being expressed autistically, but are separate conditions because neuro-normative people also have those conditions. Research into supportive rather than remediative resources for autistic people in all areas - medical, psychological, employment/school, etc. Research into the best ways for professionals to decipher and accurately assess autistic people's needs, comorbidities, acute illness, etc. A big deal is that autistic people often go untreated, undertreated, or mistreated for medical conditions due to staff misjudgements regarding both what the autistic person is experiencing and the autistic person's motivations. See my earlier comments about thin-slice judgements.
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Name	Michelle Surgenor
Demographic	Family member of an autistic individual; Researcher
Response	Micro level research to understand what help and challenges families fave when raising someone on the spectrum
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Name	Michelle, LMFT in California
Demographic	Autistic individual; Service provider, health provider, or educator
Response	How we can shift systems in our society to better support neurodivergent folks
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Name	Mikol Bailey
Demographic	Autistic individual
Response	Research that takes into account the diversity of the population of autistics, including age, race, gender identity, socioeconomic status, etc. And the different ways autism presents for different people.
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Name	Mimi Rankin Webbq, Parent of 3 with Autism
Demographic	Family member of an autistic individual
Response	Monitor&hold schools accountable for NOT recognizing medical dx & for not accomodating autistics appropriately & for allowing bullying of these students unnecessarily.We need providers to be taught & trained about autistic trait presentation&behaviors especially with regards to mental health & counseling as they do the most damage to autistics by not treating the actual root cause of the behaviors that brought the patient to them in the first place.It is especially bad with all things mental health related & first responder related. Deaths could be avoided if only training were embedded into certificate & graduate programs medically on autism. Teachers, medical providers of all types dental, counselors/mental health, physicians, people who work with autistics in any facet ALL should have autism training with relevancy to their fields and how it applies & that isn't happening. Our numbers are growing & there are far more unidentified autistics out here trying to muddle thru life- training for every aspect of the community as a standard norm would go a long ways towards inclusion for all.
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Name	Mina
Demographic	Autistic individual
Response	The overlap between the autistic and transgender communities has been known for some time. However, this information is primarily used to discount autistic, trans children’s identities, when it should affirm them. Our disabilities do not prevent us from knowing ourselves, and evidence is needed to prove that autistic children who are transgender persist at similar rates to allistic trans kids. We also need to better understand how co-occurring conditions interact from both medical and psychiatric standpoints. Diagnoses are created and applied as if they exist on an island, and do not account for the whole human as a system or the intricacies that entails. As an example, I went to visit a doctor to address symptoms of fatigue, brain fog, dizziness, and weakness. Tests revealed nothing but that I had a high white blood cell count, so my doctor referred me to a hematologist. She ran more tests, saw there was nothing else unusual, and referred me to an endocrinologist to check my hormone levels. Well, those looked fine, so I was sent back to my PCP. My symptoms remain undiagnosed and untreated, despite clear evidence that something is wrong. This reliance on diagnostics means that atypical presentations or uncommon conditions are seen as exaggerated or psychosomatic if professionals can’t relate it to a specific diagnosis.
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Name	Minela Fernandez MD
Demographic	Service provider, health provider, or educator
Response	Follow some Feeding d/o clinics and get some statistics from them regarding success of therapy, length of therapy to achieve oral success, and need for GTube placement, if at all. Consider CPBH, Center for Pediatric Behavioral Health in Wilmington NC who works with these types of children all the time.
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Name	Missy Garcia
Demographic	Autistic individual; Family member of an autistic individual
Response	All of it. Each co-morbidity needs to be researched. Starting with trauma. I’m not an expert, but I am very intelligent with outstanding pattern recognition. It is my belief that the research in the co-morbid state of ASD and trauma would well inform the other co-morbid conditions.
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Name	Misty Cameron
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	PLEASE do more research on late diagnosed/self diagnosed women. When providers cannot even properly assess and diagnose, self diagnosis is valid; the neurodivergent clinical community recognizes this and it’s time for the rest of the world to catch up. Stop allowing providers without specialized training and certification to assess and diagnose. I cannot tell you how many women I have treated who have been gaslit to the point of suicidality by ignorant providers who think they have nothing new to learn. Autistic/ADHD women are completely neglected in the research and it needs to change. We KNOW that our “knowledge” of autism comes from highly flawed research. Do something about it.
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Name	Molly
Demographic	Family member of an autistic individual
Response	The US needs to get on board with affirming PDA as an autism profile, as other countries have. Parents whose kids have PDA resoundingly find relief in this diagnosis, as it is often the only one that provides logical explanation for confounding behaviors.
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Name	Molly Schenker
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	Where to start... Caregivers of autistic children are struggling. There is not reliable daycare for many of our kids and virtually no options outside of school once the kids get older (e.g., summers are a major struggle). I would love to see more research on: year-round school models, center-based early intervention, the effects of respite on individual and family QoL. For autistic and other neurodivergent individuals, I would like to see research on "convenience" services like laundry/drycleaning, cooking, house cleaning, etc. and how these services affect quality of life and ability to retain employment.
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Name	Monica Allen
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The Autisitic Self Advocacy Network would like to see more research for Ehlers-Danlos Syndrome (EDS). I'd like to see more research on options (and availability of these) besides guardianship for Autistic adults who need a wide range of supports.
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Name	Moriah Adamick, parent of Autistic child
Demographic	Family member of an autistic individual
Response	It is clear that our society in the United States has not embraced or studied the PDA profile and leaves a huge portion of individuals without the accommodations or services they should be entitled to as a part of our disabled population. Families are suffering with an often insurmountable burden and these PDA autistic individuals are often traumatized by society's structure repeatedly trying to hammer their square pegs into round holes. We need lots of research and the establishment of a diagnostic criteria in any manual that informs access to supports and services.
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Name	Mother of an autistic daughter
Demographic	Autistic individual; Family member of an autistic individual
Response	-more research on Extreme/Pathological Demand Avoidance -more research on women with autism -more research on previously undiagnosed autism in adults -research initiated and led by autistic individuals -research into Montessori techniques of inclusion in the classroom as a constructivist critique to the behaviorist methods primarily used with autistic people and abhorred by them -research into giftedness/precocity and its connection to autism (eg hyperlexia)
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Name	Myles Davis
Demographic	Autistic individual
Response	identification of the most frequent co-occurring conditions, tracking of pertinent symptoms, and designing specialized treatment plans for autistic people.
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Name	N Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	We need more focus on how autism is inextricably linked to many co-occuring conditions. Too many studies try to compartmentalize these variables, but you cannot separate autism from an autistic person, and therefore you cannot separate the conditions that autism can cause from the autism itself. There also needs to be more studies on how autism changes the efficacy of traditional medications and treatments. There needs to be more education in the medical community on how co-occuring conditions can often mask or obscure autism symptoms, leading to misdiagnosis and under diagnosis, especially in female presenting and non-white individuals.
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Name	N/A
Demographic	Autistic individual
Response	Research on the behavior of autism in adults not just kids, and the various levels of autism on the spectrum you should be studying people with low to medium level autism just as much as people who are severely autistic/ severely autistic non verbal because autism looks different in everyone. And real adults real people that you and I see everyday at work or church or at the grocery store are living with autism right now experiencing similar issues I just mentioned and going completely unnoticed because it’s not always visible unless you take the time to learn the traits andthe thought patterns of the person(s), like I said I didn’t even know I was autistic until I was 22 and I still haven’t received a diagnosis; but I’m learning now on my own how to cope and live my life fuller.
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Name	Nancy
Demographic	Family member of an autistic individual
Response	That is a tough question me not being a doctor, researcher. This is a pervasive affliction. Coordination in medical research needed, sharing all information among ALL professionals. Also need is a ONE National Autism institute which gathers all research, houses it in one place, and connects all professional looking for Autism cure. Research in genetics, cross over and information sharing with other disease centers, ie parkenson+ Alzheimer-in other words all BRAIN Research and findings.
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Name	Nancy D Miller, VISIONS/Services for the Blind and Visually Impaired
Demographic	Service provider, health provider, or educator
Response	It is very important to study co-occurring disabilities and publish results on demographics as well as training outcomes. Make sure the disability questions remain as is in the American Community Survey.
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Name	Nancy Hauprich
Demographic	Family member of an autistic individual
Response
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Name	Nancy Williams
Demographic	Family member of an autistic individual
Response	Finding accessible solutions across the spectrum and sharing the positive results.
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Name	Naomi Mittet, Circadian Sleep Disorders Network
Demographic	Family member of an autistic individual
Response	I would like more funding to help those researching the connection with Non-24 Sleep-Wake Disorder and autism. I feel once the connection is proven and accepted, it will be considered a symptom for sleep issues such as insomnia. Typical sleep studies will not help, a person would need to free-run with their sleep and wear an actigraphy device at home. There is also genetic research currently happening, but again funding and outreach is needed.
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Name	Natalie
Demographic	Autistic individual; Family member of an autistic individual
Response	Coping with these issues as adults, discussing them respectfully with adults who are autistic. If you can learn to frame the conversation in a way that is acceptable for autistic adults, you can learn to not leave parents feeling like they have a defective child. Language matters. Qualitative analysis of how adults are treated and spoken to regarding autism and ADHD would change the quality of care dramatically.
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Name	Natalie
Demographic	Autistic individual
Response	Speaking to late diagnosed autistics, because they have often analyzed their entire life and actions
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Name	Natalie , Woman
Demographic	Other
Response
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Name	Natalie Mason
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological Demand Avoidance. ARFID.
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Name	NaTasha Turley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Effective treatment approaches for autistic individuals who are experiencing depression/anxiety. Purely ABA approaches are lacking in this area, but often most accessible. CBT is not often effective and finding an experience practitioner and DBT who has worked with autistic individuals is almost impossible for families
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Name	Nathan Blenkush, The Judge Rotenberg Educational Center
Demographic	Service provider, health provider, or educator; Researcher
Response	In order to improve autism services for people with severe problem behaviors, treatment providers need access to a full range of treatment options with appropriate safeguards to protect the patient and allow them to live in the least restrictive environment possible. Instead of regulatory procedures that seek to eliminate treatment options for all individuals, the laws and regulations should provide realistic pathways to various treatments appropriate to the needs of individual patients. One example model can be found in Massachusetts where extraordinary treatments like antipsychotic medications, planned mechanical restraint, and contingent skin shock (CSS) are available through a substituted judgement process. We recommend research efforts focus on defining and classifying severe aggression and self-injury and identifying the risks and benefits associated with existing therapies through direct comparisons with reliable and direct dependent variables. There is presently no agreed upon criteria for what constitutes treatment refractory aggression or self-injury. Yet, it is abundantly clear that current therapies, except CSS, are inadequate. Classifying and defining treatment refractory problem behaviors allows direct comparison of treatment approaches within and between participants. Such definitions also assist in weighing the risks of inaction versus the risks and benefits of existing therapies.
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Name	National Council for Mental Wellbeing
Demographic	Representative of advocacy organization
Response	Additional research in the field of autism and co-occurring mental health conditions is needed to ensure and advance appropriate and validated tools for screening, cost-effective and readily accessible assessments, and pharmacological and behavioral interventions for individuals with co-occurring mental health conditions.
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Name	Nele Van hemelen
Demographic	Family member of an autistic individual
Response	PDA research because PDA NEEDS, however the condition is an autistic condition, are different from the needs from people who have classic autism disorder or Asperger’s
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Name	Nellie
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization; Other
Response	More research that addresses recebt anecdotal findings. More research in masking.
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Name	Neoli Hernandez
Demographic	Autistic individual
Response	Kimberly Kitzerow & her research on the BH4 Pathway. Please don't steal research and findings, just fund some research for once. Some of us with Comorbidities would like some peace in this lifetime. Also yes DMT can be extremely beneficial for autistic individuals with complex ptsd. This could be an incredible therapy for autistic individuals and I hope more funding goes towards this not only for autistic people, but for anyone with ptsd. It helped me survive healing after being kidnapped & tortured. I no longer have access & the treatments are so expensive, inaccessible for autistic people who struggle with steady incomes.
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Name	Nicholya Crockett
Demographic	Family member of an autistic individual
Response	My son has been diagnosed with Autism with Pathological Demand Avoidance and ADHD for just over a year. In that year, I have only met three people who even know what it is. One is the psychiatrist who diagnosed him, one is his teacher who had researched it in regards to her own daughter, and the third is the school's psychiatrist, and he thinks that because it is not recognized in the DSM-5, that it is phony. I have had to educate about PDA to my son's entire circle of people that interact with him, from his pediatrician to the special education team at his school because NO ONE KNOWS IT EXISTS! Of all the things that I advocate for my son, my number one goal, wish, hope, is for PDA to be recognized as a diagnosis worldwide. As I said, I am just one year in to diagnosis, and have already felt and faced this immense uphill battle for not only PDA awareness, but to have my son's differences be taken seriously.
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Name	Nick McCurdy, Patient/Advocate
Demographic	Autistic individual; Family member of an autistic individual; Researcher; Other
Response	Get more information about life struggles from the patient's perspective at varying levels of the spectrum, especially with autistic adults
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Name	NICOLAS LINARES-ORAMA, FILIUS CENTER-UNIVERSITY OF PUERTO RICO-MEDICAL SCIENCES CAMPUS
Demographic	Researcher
Response	We need to investigate on the challenges faced by health and special education systems for personalizing care, particularly for Hispanic individuals.
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Name	Nicole Corrado
Demographic	Autistic individual
Response	There is a need for surveys like this one. Talk to autistic people directly. We are the experts.
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Name	Nicole Collings
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Research on Pathological Demand Avoidance (PDA). We need more autistic-led and autistic-informed research if we want to really understand the issues impacting autistic individuals including ensuring reliability and validity.
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Name	NICOLE LEBLANC
Demographic	Autistic individual
Response	LONG COVID IN AUTISM PTSD IN AUTISM TRAUMA MODALTIES TO RELEASE TRAUMA , HEAL LONG COVID LONG COVID TREATMENTS, GUT HEALTH AND PROBIOTICS IN AUTISM
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Name	Noemi Spinazzi, MD, FAAP, Down Syndrome Medical Interest Group (DSMIG), DS-ASD workgroup
Demographic	Researcher
Response	Over the past few years, members of the Down Syndrome Medical Interest Group have formed a workgroup aimed at catalyzing research in the field of Down syndrome and autism, as well as improving provider and family awareness, education and outreach. Despite these efforts, there continues to be very little data on interventions that are most effective in supporting this vulnerable population of patients. Research from the general population of individuals with autism is extrapolated to those with DS+ASD; commonly recommended strategies include applied behavioral analysis, occupational therapy, augmentative communication, special education programs with an emphasis on TEACCH methodology, and psychotropic medications to address the co-occurring behavioral challenges. However, there are no studies that prove that these therapies and techniques are truly effective for individuals with DS+ASD. Tests used to define IQ are not only culturally bias, but the added layer is that they are not specifically designed to identify the strengths and challenges of individuals with genetic conditions like Down syndrome. Floor effects result in limited information to be drawn from these measures from an intervention standpoint. Most individuals with DS+ASD are not even able to participate in the assessment which further limits access to care if a provider is not comfortable with making a clinical determination outside of standardized assessment.
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Name	Olive
Demographic	Autistic individual
Response	I think a large thing that needs to be addressed when it comes to autism and comorbid conditions is accessibility to care and quality of care as so many people myself included simply can’t access the care we need to properly get diagnosed or end up in situations where we are made to feel less than for not being able keep up with medical care or not being taken seriously in medical settings. There is an overall lack of understanding when it comes to autistic patients and so many suffer because of it.
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Name	Olivia
Demographic	Family member of an autistic individual
Response	PDA
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Name	Pamela Bows
Demographic	Autistic individual; Representative of advocacy organization
Response	Communication methods research, effective educational best practices, how to educate providers and educators to presume competence, differentiating autism traits from mental health symptoms.
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Name	Pamela MacAllister
Demographic	Service provider, health provider, or educator; Other
Response	Institutional abuse accountability for the service providers for people with autism and co-occurring disabilities. There is such a money grab to provide services and abuse is rampant.
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The USA is significantly behind other well- developed nations in the area of the PDA profile of autism. This is incredibly important since these individuals require a very different approach than other autistic individuals. My child would likely benefit from some Occupational Therapy if we could only find a provider who understands and works well with PDAers. Our last OT was not able to accept that our child was PDA because they didn't see it during therapy sessions.
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Name	Parent
Demographic	Family member of an autistic individual
Response	Supports and Treatments for psych and dental. Are these conditions truly co-occuring or part of the autism diagnosis; how many individuals with autism do not have a co-occuring diagnosis? What education do medical professionals receive about autism and intellectual and developmental disabilities?
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I am not sure, but I know the gastrointestinal issues (particularly constipation and food distress) can be debilitating. So, why is this happening? Can we control some of these symptoms with diet? Definitely need more efficacious medication and interventions. It takes a lot of time to know the person well enough accurately to tell what he/she is communicating through their behaviors. For example, my daughter constantly pulls up her pants when she is experiencing menstrual cramps. It took a long time to figure that out. If we could have a long-term study of behavior-association with malady, we could provide a list to family and staff members as possible explanations for behaviors.
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Name	Parent
Demographic	Family member of an autistic individual
Response	More studies on effectiveness of medications for ASD and co-occurring conditions is desperately needed.
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Name	Parent of Young Adult with Autism
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	As a psych major who worked with children with autism in the 1970s, my focus would not be on research. Perhaps in the individual disciplines of speech, occupational and physical therapy, etc., but not anything that will delay actual treatment. Compared to the 70s, we have a myriad of approaches and therapies. It might be appropriate to report on successes and what doesn't work, say in a particular classroom, or school. But no traditionally academic approach with control groups is going to help children who are highly individualized responders to any sole therapy or teaching style. I taught 2 of our children at home. Both had special needs and were very different. I had learned many educational skills, but then had to learn the skill of constantly adjusting to meet each child's needs. The desired outcome is setting a child free to utilize his/her gifts, not to validate some specific numerical result. See Temple Grandin's recent books.
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Name	Patricia Quinn, Mental Health Asso of O.C. and Dept of Mental Health of O.C.
Demographic	Service provider, health provider, or educator
Response	That which: Takes stock of the adequacy of resources, anticipating they are inadequate to address the burgeoning need Includes promising therapies that stimulate social interaction and positive self image like the creative arts Explores how sensorimotor approaches may help Identifies the needs of support staff and families to reduce family causes of dysregulation and iatrogenic injuries from from staff Looks at the adequacy of psychiatric/psychological training of those who assess and confer a diagnosis of autism.
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Name	Patricia Thomason, Parent
Demographic	Family member of an autistic individual
Response	Research should include studies, treatments, and adaptability/differentiation of common treatments should all be considered. In my experience, the autistic person can not always perceive and/or process thoughts and rationalizations due to the mental health components they are experiencing. The autistic mind, again in my experiences, prevents them from processing sense or rational thoughts from a situation because adrenaline and fears from anxiety and anger, which leads to aggressive behaviors or fight/flight reactions. Research in dealing with anxiety/anger in the autistic mind would be helpful. Finding the differences or adaptions in current treatments could be beneficial to many in the community.
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Name	Patricia Wright, Proof Positive
Demographic	Representative of advocacy organization
Response	Learning the science and skills of positive psychology may help address the physical and mental health issues many autistic individuals experience. The autism community has an opportunity to address mental health conditions through the application of wellbeing practices. Wellbeing skills can work in tandem with existing autism services and can help address co-occurring conditions in the autistic population. Though not widely applied in autism services and supports, positive psychology interventions, including wellbeing practices, can benefit mental health (Chakhssi et al., 2018). Autism service providers can take action by incorporating mindfulness practices for those for whom they provide service and for their employees. The autism community deserves to benefit from the wellbeing practices established in the field of positive psychology. Deploying research dollars could help establish the efficacy of wellbeing practices in the autistic population.
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Name	Patricia, Student
Demographic	Autistic individual; Family member of an autistic individual
Response	There needs to be more research into co-occurring disorders in autistic women. Every autistic woman I know, myself included, suffers with one or more of these conditions: POTS (postural orthostatic tachycardia syndrome), hEDS (hyper-mobile ehlers danlos syndrome), PCOS (poly-cystic ovarian syndrome), endometriosis and mast cell activation syndrome. And yet there is so little research regarding the co-occurrence of any of these conditions and autism. I also believe that the occurrence rates of autism in woman vs. men needs to be readdressed, just because more men and boys receive diagnosis doesn’t mean there are more autistic males overall.
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Name	Paul Ridikas
Demographic	Autistic individual
Response	I think that there needs to be footage of videos or images that might cause a dignosis of autism on an individual.
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Name	Payton
Demographic	Autistic individual
Response	There should be research involving alternative forms of communication for autistic people, as well as helping to lower the sensitivity of one's sensory experience so they can be more on the levels of their adult peers. Research should also be done on the way schools are handling not only IEPs for autistic students but also how their peers approach the subject. Schools are the foundational ground of development for many autistic people and it creates many of the environment conditions that lead to anxiety, depression, and other mental health problems. There should also be research conducted into the mental health solutions that some charities such as Autism Speaks offer as they have been known to abuse those who have come into their care looking for help with their autism symptoms. I understand that there is little influence publicly over private institutions but there should be a vetting process in place to ensure that autistic people aren't being given electroshock therapy to force their brains to "rewire" and "become normal" or something similar.
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Name	Penny, Autistic adult
Demographic	Autistic individual; Family member of an autistic individual
Response	Causation/correlation research is great, but unapplied knowledge is just a trinket. Research must be geared toward effective, affordable, and universal accommodations to ensure that folx on (and off!) the spectrum have a fair shot at a satisfying (or at least minimally traumatizing) life & career.
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Name	Person with Autism
Demographic	Autistic individual
Response	1. I think more research needs to be done to help educate mental health practitioners both about autism and co existing mental health conditions. Many mental health practitioners do not have the education and training to diagnose autism and yet they often are dismissive of such diagnosis of their clients even when made by an autism expert. Normal mental health therapies do not work well for people with autism so there needs to be new approaches to counseling and therapy for people with autism. 2. More research about learning disabilities, sleep disturbance etc
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Name	Peter Brown
Demographic	Family member of an autistic individual
Response	There is tremendous variability in presentation of autism. Research should focus on groupings. Pathological Demand Avoidance (PDA) appears to be a grouping or profile with similar characteristics where common strategies may exist for parents and for adults living with the profile. Temple Grandin identified three different thinking styles, visual, mathematical/musical and verbal. Maybe these thinking styles could be related to profiles with similar characteristics. Research should look for common characteristics which could allow other profiles to be developed. PDA needs more research.
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Name	peter mazure, parent
Demographic	Family member of an autistic individual
Response	Increased attention to non-medication approaches to anxiety.
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Name	Pon kavitha Anbarasi, St. Mary's College
Demographic	Family member of an autistic individual; Other
Response	Awareness and studies related to the autistic individual.
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Name	Priya
Demographic	Service provider, health provider, or educator
Response	Why do a lot of patients with Autism have oropharyngeal dysphagia
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Name	Purna Waldow
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	In general, we need more equitable research that utilizes inclusive population samples of all races, sexes, genders, ages, and economic classes. I'd like to see research about how accommodations improve outcomes, which would bolster the populations' ability to access them at work and school settings. Research also needs to be conducted regarding the number of autistic people being incarcerated, likely due to other unaddressed mental health conditions, and how addressing their support needs could prevent incarceration.
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Name	Quinn
Demographic	Autistic individual; Family member of an autistic individual
Response	Female autism needs to be researched. The cross section of autism & ADHD/ADD needs to be researched. Our diets as an American society and how that affects one’s brain chemistry, hormone production, insulin levels… it all needs to be looked at. Where is the connection between these things? & what can we, as the autistics, actually tangibly control and change for the better?
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Name	Rachel
Demographic	Family member of an autistic individual
Response	i've heard about ultrasound to rewire the brain for parkinsons, dementia, drug addictions. wondering if there is a potential for this with ASD
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Name	Rachel
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Rachel
Demographic	Autistic individual
Response	Research is needed not to cure autism but to help us function in a neurotypical world. We need research on why anxiety is heightened in autistics and what skills can help autistics with their heightened anxiety. There are some general coping skills for anxiety, and they do not always help autistic individuals because their brain functions differently. This also goes along with GI issues. Autistic individuals are more sensitive to medication so what medication is helpful for autistics with gastrointestinal issues and even anxiety.
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Name	Rachel brown, University of Kansas school of medicine
Demographic	Service provider, health provider, or educator; Researcher
Response	Focus on severely impacted autistic individuals and on severe and intense behaviors; use of implementation science to explore barriers to intervention; we need to understand why autistic children are still prescribed antipsychotic medications, often by midlevel practitioners, don’t get known effective behavioral supports and what negative consequences result. We need research into card delivery systems to establish which patients can be safely cared for in primary care settings, which need specialist interventions, which need residential care and what kindbb CB of settings can support the highest quality of life
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Name	Rachel Goodman
Demographic	Autistic individual
Response	To me I see the biggest thing needed is research & then educating medical professionals so they know about the do-occurring conditions.
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Name	Rachel Payne, PhD, Didlake, Inc.
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	Our research recommendations include more comprehensive studies on the prevalence of co-occurring conditions in autistic individuals across different age groups, genders, and cultural backgrounds. Research is needed to identify barriers to service provision for individuals with autism and co-occurring conditions. This may involve studies on access, disparities in care, and the effectiveness of different service delivery models in meeting the needs of individuals with autism. We recommend expanding on and strengthening the research on models that have been studied in this population. Additionally, research that examines the intersectionality of autism and co-occurring conditions with other factors such as race, ethnicity, gender identity, sexual orientation, and socioeconomic status could help with informing more equitable and inclusive approaches to research and practice.
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Name	Rachel Spencer
Demographic	Family member of an autistic individual
Response
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Name	Rachel Swisher
Demographic	Family member of an autistic individual
Response	I would like to see double-blind studies on physician and therapist interaction with children on the autism spectrum. Are their mental health needs being addressed as well as their physical needs? Is there a checklist to go over with children on the autism spectrum to adequately address their mental health needs? If not, or if the child is unable to communicate, can one be offered to the caregivers? This issue seems daunting to parents with children on the autism spectrum and would benefit everyone involved.
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Name	Raine
Demographic	Autistic individual
Response	Observing the differences in autism and all it's relate co-occuring conditions and disabilities between male, female and intersex people. This research should include varying age groups (children, teenagers, and adults) as well as different races and ethnicities.
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Name	Rainier, Endeavor to Hope Counseling, LLC
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Research needs to be done on the ACEs and autistic people, the correlation with hypermobility, the impact of being “autistic coded” and mistreated pre-diagnosis (AKA being treated differently without knowing why), and the impact of black and white thinking.
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Name	Rajarshi Rit, The University of Burdwan
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	COMMUNICATION. AAC ASSISTIVE TECHNOLOGY Presume competence. Understand cognitive style, and ask the questions in appropriate format. Frame the questions in culturally relatable way.
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Name	Raliat Bello
Demographic	Family member of an autistic individual
Response	Unsure
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Name	Rashelle
Demographic	Autistic individual
Response	Research I believe needs to extend to individuals. The effects of COVID changed my personality causing my depression to ease but my anxiety to go up. Different meds are required to keep me stable. Autism isn't a problem but people treat it like it is. Empathy in allistic and autistic people need to be researched too
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Name	Reagan
Demographic	Autistic individual
Response	For the love of god, safe spaces for autistic people to be able to work. And get paid equally. Treated equally. I feel so inhuman because I struggle to have a job.
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Name	Rebecca
Demographic	Autistic individual; Family member of an autistic individual
Response	Genetics. Autism is genetic put research into the families with it. It’s so clear it’s genetic and it’s shamed heavily and punished and thus we are forced to hide ourselves
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Name	Rebecca
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Allow people to self diagnose and then listen to their description of what it’s like having autism. The diagnostic criteria is too slim and does not allow for adults to be easily diagnosed. If dx was missed during childhood it’s almost impossible to get as an adult. Free screenings need to be made available through health department for adults.
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Name	Rebecca Bowen, American Speech-Language-Hearing Association
Demographic	Other
Response	Evidence-based comparative effectiveness research is needed to:  determine which intervention(s) yield clinically significant improvements in speech, language, cognition (e.g., memory, attention, executive function), and social communication and address the unique challenges associated with the various comorbidities; understand which intervention approaches provide the most meaningful communication and social interaction outcomes for various age groups; identify which interventions are most beneficial for which sub-groups of individuals with specific co-occurring conditions including responsiveness to treatment at different times during the lifespan; examine the impact of changes in frequency, intensity, and duration of treatment;  identify screening and assessment tools that are most effective at accurately diagnosing autistic individuals with co-occurring conditions, especially differential diagnoses.
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Name	Rebecca Dosch Brown, Parent advocate
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Most just say anxiety, OCD, depression etc. is common co-occurring (and typically searches for biomarkers or genetics for this). Why not ask: wouldn't you have anxiety if you constantly had people telling you want to stop doing, telling you to sit still, and yelling at you and talking about you as if you are not there all day? That alone would cause these co-occurring MH conditions. Its traumatizing being misunderstood so much by adults who are supposed to care and love children (not berate and control them). I'd love for researchers to look at the behaviors of the adults surrounding the children with as much scrutiny as they give to the people with ASD's behaviors. How they treat our children is often traumatizing and damaging to our children's development as people.
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Name	Rebecca Faith Crews, Autistic adult
Demographic	Autistic individual
Response	Where do these co occurrences come from? Why do they occur? How can we better treat them to make them less impactful on an individual’s life
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Name	Rebecca Farrell
Demographic	Family member of an autistic individual
Response
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Name	Rebecca Jukes, Mom of Autistic Child
Demographic	Family member of an autistic individual
Response	Autism presents differently in everyone, there are 100's of conditions that come with autism but within those conditions is another scale you need to qualify for to have autism. For example (A) has anxiety can be managed with meds (B) has anxiety can not be managed by meds (C) has anxiety but does not qualify for a diagnosis (D) does not have anxiety. But in order to qualify for autism services you need to have anxiety? Half of those people are being misdiagnosed.
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Name	Regina Conti
Demographic	Family member of an autistic individual; Researcher
Response	Practically-oriented research with human participants. Research to develop approaches to dealing with the challenges of profound autism, and capture the perspective of the valuable people living with it.
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Name	Rex Frasier
Demographic	Autistic individual
Response	GENDER RESEARCH!!! Not all autistic people are the same for their perceived gender/sex. We are all individuals. 1 out of 7 autistic people experience some type of gender dysphoria or identify other than what they were assigned at birth. These people also more closely diagnose with what is true for the opposite of their gender assigned at birth. I have more typical identifiers with female autistic adults than I do the males. I myself am also gender-fluid leaning more towards feminine than masculine. Autism is exceedingly more varied than what is currently being researched.
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Name	Rhonda Moore
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	We need more research on menopause and mental health across the lifespan we need more research on strategies for healthy aging across the lifespan We need more research on chronic pain disorders, mental health and autism across the lifespan we need more research on Autism and ehlers danlos
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Name	Rick Grossman
Demographic	Autistic individual
Response	Any research about autistic people should have autistic people on the review board to determine how ethical it is and how the autistic people are being treated. Today, most research is done on ‘the cause’ of autism. We don’t do research on the cause of homosexuality, or left-handedness, or political persuasion. Research needs to be done based upon what autistic people want and need. There’s absolutely no work out there. That is what autistic people need. It’s patronizing. And immoral. Hundreds of thousands of people in this country are desperate for services and no one has any idea because they’re not asking as a result we have not been able to utilize the skills and talents of these people and society is a hole is operating at a deficit. How can autistic and non understand specific differences. This should be appplied from an anthropological Approach. We know that people from country x have differences and forgive them- but not autistics.
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Name	Robert Briskie, U.S. Citizen
Demographic	Autistic individual
Response	Research focus on ASD has predominantly centered on children, but a critical shift is needed towards comprehensive studies on adult ASD people. Exploring dietary needs for both children&adults, particularly those diagnosed later in life: crucial. Understanding how their brains adapt&potential harmful effects due to societal impacts on high-masking individuals are vital research areas. Regular surveying of ASD people(beyond multiple-choice formats) can provide valuable insight. Investigating role of money in co-occurring conditions, rates of ASD people below the poverty line&surveying parents, especially those whose children have experienced suicide, can unveil critical data on manifested co-occur conditions. Examining connection between ASD&physical conditions like Ehlers-Danlos Syndrome, Binocular Vision Disorder& dental & bone manifestations is essential. Research should explore potential treatments for individuals facing painful conditions, seeking avenues for healing, aid, & regeneration. Exploring homeopathic, non-evasive, frequency/tone/laser/Chinese medicine, &naturopathic therapies, & collaborating w/countries holding extensive info., can pave the way for innovative treatments in these areas. Overarching goal is to enhance understanding, provide holistic support&discover effective treatments for the diverse challenges faced by individuals w/ASD.
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Name	Robert C Bransfield, MD, DLFAPA, Hackensack Meridian School of Medicine and Rutgers--Robert Wood Medical School
Demographic	Service provider, health provider, or educator; Researcher
Response	Autism, as well as schizophrenia and bipolar illness, are multisystem illnesses that often have an infectious disease contributor and an immune mediated pathophysiological process.
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Name	Roberta Kane
Demographic	Family member of an autistic individual
Response
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Name	Roberta Lincoln, Parent Advocacy Group and lived experience
Demographic	Family member of an autistic individual
Response	The processing time delays not only on verbal reception, but also in the length of time to learn/understand “everything-more delayed than neurotypical… unless it is a distinct area of interest (both time as in a classroom, and time as in 6 months for typical peers, 18 months for those with high functioning autism; also, how and why ABA is so damaging to higher functioning autistic people… and Collaborative Problem Solving is so much better.
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Name	Robin Baumeister
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	I think a really under-researched avenue is the etiology of these conditions in the context of inter-relatedness. Rather than focus solely on individual conditions, their holistic relationship to other physical or mental outcomes should be considered. Stress and trauma are important avenues for consideration. Additionally, more research needs to be done with adults. Longitudinal designs across the lifespan are needed. Diversity in race, location, gender identity, etc. is also necessary in future research. Also important is more research investigating early mortality among autistic adults; protective factors should be investigated further. In general, any research in this broad field is warranted.
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Name	Robin Blitz
Demographic	Service provider, health provider, or educator
Response
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Name	Robin MacDonald, Parent and Conservator
Demographic	Family member of an autistic individual
Response	Housing options
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Name	Robin Rhoades
Demographic	Family member of an autistic individual
Response	Need more research with high needs non verbal level 3 autism individuals. Ways to improve lives of the most severely impacted individuals with profound autism.
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Name	Robin Weisman
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Yes. Co morbid conditions are often not identified or underidentified. We have to be able to identify and treat these. There is no ASD pill. People with ASD can have other conditions just like others. We trat symptoms not just medically but also with teaching skills. If we dont understand how these conditions work together, then we are not supporting, teaching and treating ASD as effectively as possible.
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Name	Robyn Linscott , The Arc of the United States
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response
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Name	Rose Baumann, Parent advocate
Demographic	Family member of an autistic individual
Response	Research on the causes of and treatment strategies for pica, self-injurious behaviors and elopement, which are common to those on the level 3 end of the spectrum is necessary to support not only the health of individuals on the spectrum but to preserve their lives.
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Name	Rosemary
Demographic	Family member of an autistic individual
Response	I think research in to RSD trauma and how to identify and the then treat would be amazing. Our child had experienced traumatic events both as part of being undiagnosed autistic at school and life events. Trauma and RSD (reaction sensitive) means she can experience a paralysing fear which prevents her enjoying life. Very sad to watch so my life potential and fun pass her by
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Name	Rosemary Brierley
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Rosemary M. Morgan
Demographic	Autistic individual
Response
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Name	Rowan Gibson
Demographic	Autistic individual
Response	More research needs to be done on these topics; specifically, how health practitioners can better support autistic people with these physical and mental health struggles.
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Name	Rowan Leshy
Demographic	Autistic individual
Response	How best we learn in order to foster better education. What our best skills are so that we can get jobs we’re a good match for so we don’t have such a high career turnover.
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Name	Ruby Bard
Demographic	Autistic individual
Response	I think that wide spectrum demegraphic reasurch including these things would be super important to guide what reasruche would most benifit the auttisic comunity including stuff like: Age Sex at Birth Current Sex Hormones Gender Other Conditions (Physical, Psychological, and Social) Work Status Work History Location Previous locations lived (To better understand the nurture parts of autism) Number of Close friends Family History of health issues and autism Dates of Diagnosis for health issues (Later Diagnosis comes with worse symptoms and worse symptom management) Access to Snap Access to Disability Benefits Access to Public Education and Jobs training Access to Mental health care and resources Access to Medical Health Care and Resources Social Network Support Discrimination history (Have you felt discriminated by X/Y/Z in your interactions with them) Abuse History And having free fill boxes for Autistic people to be able to better explain themselves and there answers because we tend to like to be clear about why we chose what options we chose.
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Name	Ruth Hevelone, PDA North America
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	There is no research done in the USA to support people with PDA, the profile of autism that so many people have, so thousands of people are left with no supports. The UK found that 70% of PDA children cannot access school due to their PDA. The UK has been researching PDA for 30+ years but without any research in the USA, supports are very hard to acquire for our children (and selves).
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Name	Ruth Horowitz, Author of Living With Autism Undiagnosed
Demographic	Autistic individual
Response	When is it depression and when is it shut down/autistic burnout. And effects of menopause on autistic women, and autistic burnout.
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Name	RuthAnn Winschel
Demographic	Autistic individual
Response	More research on autistic adults experiences of meltdowns and how to best support them and I’m saying this because I’m a high masking adult so many people would never know I am autistic but at times I can have extreme meltdowns that I have no control over. Research on education of psychiatric/ mental health professional education/ knowledge of autism. Self acceptance/ internalized ableism. Research on how often autistic people are restrained when they can’t control their meltdowns like if people are responding in the wrong way and causing more trauma instead of assisting them with their sensory needs.
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Name	Ryan Bradley
Demographic	Autistic individual
Response	Isolated one self from a party unless interest me Sensitivity to Certain levels of sounds Feel relax when entering a dark room after sound periods of time in the artificial light What senior citizens with autistic need to survive and be independent Genetic screening but only forward Type 2/3 and not Type 1.
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Name	Ryan Erdozain
Demographic	Autistic individual
Response	It makes me angry that ASD and some other common disorders are mostly advertised like they only affect children and by organizations like autism speaks who make people like my dad think autism is something that can be or needs to be cured and that it isn't a lifelong disability. I also find it strange how we are in the 21st century and yet BIPOC individuals, woman and young girls, and individuals in other small communities are treated differently even though they aren't any less likely to have autism as the rest of the population. I think the standards for diagnosis need to be reevaluated to fit a wider demographic including adults who are mostly finding their way into the neurodivergent community through social media platforms like TikTok and individuals in the minority who are often told that they don't fit the outdated criteria for autism just because they aren't the average white autistic child.
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Name	S
Demographic	Autistic individual; Family member of an autistic individual
Response	PDA needs to be separated from the useless diagnosis of ODD
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Name	S.
Demographic	Autistic individual
Response	There needs to be more research on gender dysphoria and gender incongruence in autistic people. There needs to be more studies on trans people and non-binary people on the autism spectrum in particular. Since being both autistic and nonbinary is stigmatized, more research on nonbinary brain and autism may help lessen stigma against nonbinary and trans people.
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Name	Sabrina Par
Demographic	Family member of an autistic individual
Response	research regarding PDA (pathological demand avoidance) and EDS (Ehlers Danlos)
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Name	Sacha
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA needs to be more recognized within the healthcare and educational community and better understood so children and adults alike can be properly supported rather than punitively punished for what is effectively a nervous system disorder.
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Name	Sam Stern, either individual person or democrat-center
Demographic	Autistic individual
Response	it would be great to form a list of guide for how to support your $relationship who has multiple difficulties. something like "my person will not go into certain stores with me " or "my friend gets agitated/anxious/confused when they perform this action" etc.
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Name	Samantha
Demographic	Autistic individual
Response	I wonder if more research might be needed looking at undiagnosed autism. Autistic people who have learned to fit in could be a vital resource as well as a demographic in need of more support and understanding. How many of those suffering with mental illness are also autistic and would be served by better understanding the roots of their problems?
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Name	Samantha
Demographic	Autistic individual; Family member of an autistic individual
Response	Internalized PDA General/subclinical PDA Dyspraxia awareness Tongue tie surgery benefits for adults, therapy benefits for pre and post-op Autism not as a disability but as a neurotype, actual prevalence rates.
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Name	Samantha
Demographic	Family member of an autistic individual
Response	Research in other behavior strategies than ABA like floortime and sensory based practices. Also, providing supports at a younger age so children have the early intervention that research suggest.
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Name	Samuel Pehrson
Demographic	Autistic individual
Response	Research into psychedelic therapy. More specifically, psilocybin. Though any psychotropic which acts on the serotonin 2A receptors would be greatly beneficial research, not only for those with autism but depression as well.
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Name	Sandra
Demographic	Family member of an autistic individual
Response	Needs more research defiantly but also more resources for this population
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Name	Sandra Doyon
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Sandy
Demographic	Autistic individual; Family member of an autistic individual
Response	Into Pathological demand avoidance
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Name	Sandy Wormald
Demographic	Autistic individual
Response	I think when you’re dealing with autistic people because there’s such a range, you need to have someone with empathy and intuition dealing with and researching us. Otherwise they’re always studying us to get the results they want or to prove judgements they have about us rather than learning to help us and understand us as we are. Everything is always done so we act and look more like “normal” people but we each have gifts and sometime we are so gifted that if we were properly understood and cared for we could be a benefit to the world and give what no one else can. If you make us mask all the time it takes so much energy that we don’t have the time and energy to express our giftings. Besides that we still fail and the mask inevitably falls off often because we’re not build to wear one. It wastes time and effort of all those involved.
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Name	Sara
Demographic	Autistic individual; Service provider, health provider, or educator
Response	More info on neurological aspects. Personally, none of my neurons are where they should be, and anesthesia doesn’t work right on me. I’m sure those pieces are interconnected with the over and under perception of sensory stuff, and hyper-focus parts, which then impacts anxiety and mental health.
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Name	Sara
Demographic	Autistic individual
Response	Attention needs to be paid to women who went undiagnosed, or who were misdiagnosed with things like Bipolar, Borderline Personality Disorder, etc. Many of us are just Autistic, and could really use resources to prevent meltdowns, burnouts, and further traumatic experiences.
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Name	Sara Brown, Prevent Blindness
Demographic	Representative of advocacy organization
Response
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Name	Sara CdeBaca
Demographic	Family member of an autistic individual
Response
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Name	Sara Trovinger
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety
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Name	Sarah
Demographic	Service provider, health provider, or educator
Response
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Name	Sarah
Demographic	Autistic individual; Family member of an autistic individual
Response	I truly believe that connective tissue disorders are going to be the big break. I think it's the source of a lot of debilitating problems. Heds is associated with the MTHFR gene. Even one copy of a "broken" variant can impact how one can utilize B vitamins. Of which are fundamentally required for so many body systems to work correctly. Some 40% of the population has at least one bad copy. And there's already a cheap, readily available OTC supplement that bypasses the deficit cause by the MTHFR genes. The impact that could have is astronomical. Similar to how we don't even think about our fortified cereals at this point.
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Name	Sarah K.
Demographic	Service provider, health provider, or educator
Response	I am interested in research that might help better distinguish ASD and Schizoaffective Disorders.
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Name	Sarah Kelly
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Outcomes of autistic children who have a 1:1 aid to help with academics vs those who do not. We have a couple of FDA approved meds to treat autism related irritability. We need more. The current meds have the possibility of fairly significant side effects.
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Name	Sarah Lau
Demographic	Family member of an autistic individual
Response
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Name	Sarah Marlowe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Building our understanding of PDA is the most urgent as it is so little researched. I have learned most as a parent from lived experience educators but the research must catch up as the consequences for PDAers - 70% of children not being at school for example - are extremely serious. This reflects my child’s experience despite great family support, a supportive school and access to good health care providers. This autism profile is extremely challenging
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Name	Sarah McCarthy
Demographic	Autistic individual
Response	Studies on people of colour links between sensory issues
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Name	Sarah Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	More research into late-life diagnoses/ adults with autism, more research into undiagnosed autism in women (AFAB), more research on the commorbid symptoms between ASD & ADHD, more research on the relationship between autism and hormone functions, improved accessibility for self-reporting/ contributing autistic experiences/ symptoms/ behaviors to research (or more frequent research with larger sample sizes & visible ways to contribute personal experiences)
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Name	Sarah Mouser
Demographic	Family member of an autistic individual
Response	Research the “spectrum” aspect. Level 1 & 2 autism is NOT the same as level 3 autism. Level 3 autism needs more funding. People with the inability to communicate need the research funds.
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Name	Sarah Muecke
Demographic	Autistic individual
Response
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Name	Sarah Peitzmeier, University of Michigan
Demographic	Family member of an autistic individual; Researcher
Response
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Name	Sarah Stewart
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Not only research on the actual conditions, but the diagnostic journey and where diagnoses are being missed
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Name	Savannah Higgins
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	We need more inclusive and intersectional research. Autism research has been narrowly focused on the experiences of white, cisgender, males. This leaves autistic people living at other intersections without access to adequate, evidence-based services. Services and support should not be one-size-fits-all, especially in a sociocultural context.
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Name	Scott Jones
Demographic	Autistic individual
Response	ties to adhd and ties to intestines' issue. there needs to be more research in this field in general.
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Name	Sean Heupel
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	The evidence and consensus within the community is to answer need, versus speculation. At present, autistic individuals are the most unemployed/underemployed demographic in the United States, mostly due to not adhering to social expectations (i.e. the 'mask' slipping off). Prior to exploring co-occurring conditions, it would be more relevant to educate the masses on autism as a condition, not a disability, focusing on acceptance of differences. This can prevent homelessness, self-harm, self-resentment and promote quality of life. Save the co-occurrence research for 'after the fire is put out'. NOTE: I offer to contribute resources toward this endeavor.
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Name	Shannon
Demographic	Family member of an autistic individual
Response	Better access to quality health care, medical care, alternative medication options, day programs for socialization, vocational training, staff to help them, relief for caregivers, actual crisis intervention that doesn't just send you to ER to dope up your kid and send them back home. How is that helpful. It completely traumatizes the child, family and you lose your childs trust, creates PTSD and makes things worse. Train police departments, medical staff, families, etc. Too many children are being diagnosed and are turning in to adults with no help out there. This is a crisis that needs emergency funding. It is unfortunately only getting worse.
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Name	Shannon Crandall
Demographic	Autistic individual; Family member of an autistic individual
Response	I would like to see research done on the connections between adhd, ehlers danlos and autoimmunity with autism. I have all of these co-occurring conditions and feel that I had a late diagnosis for autism because of these co-existing conditions.
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Name	Shari Washburn, COPAA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	More research on earlier identification of girls with autism as a way to address pervasive depression from masking; research into how to regulate disinhibition
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Name	Sharon Anderson
Demographic	Family member of an autistic individual
Response	When a child is IDD, I ponder the need for education, in terms of math, reading, etc. It seems there should be dedicated learning opportunities that focus on survival and daily life tasks such as eating, dressing, putting on outer garments, putting on/taking off shoes, feeding, brushing teeth, etc. It seems the education dollars are moot. Children with severe or extreme IDD will benefit very little with classroom studies. I feel teaching them basic daily functions and signing, i.e., help, eat, drink, danger, etc., would serve them far better. I am not opposed to an education, however I think the focus should be primarily that of self care.
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Name	Sharon Saavedra , Parent
Demographic	Family member of an autistic individual; Other
Response	Medical and therapeutic interventions that work Making communities aware Accessible to our folks
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Name	Shauna Ikahihifo
Demographic	Autistic individual; Family member of an autistic individual
Response	Most research on autism is conducted on autistic children, ignoring the fact that these children grow up to become autistic adults with very little supports available to them. We need more research done on the lives of adult autistics and how to best support us not only in the transition from adolescence to adulthood, but also throughout the remainder of our lives. This is especially those of us who were missed as children and only became diagnosed after experience significant mental and physical health problems that had devastating effects on our professional and personal lives.
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Name	Shauna, Mother of ASD Adults
Demographic	Autistic individual; Family member of an autistic individual
Response	We need more direct funding to in patient sites for people with co occurring conditions that specialize in mental health and autism. We need more funding for adults with autism and co occurring conditions. Funding for autism programs stop at age 21 to providers. Insurance companies also do not pay for a lot of programs and treatment after the patient has turned 21 The current non profit funding strategy does not help.
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Name	Shawn Sullivan, Autistic adult
Demographic	Autistic individual
Response	Research should be focused on helping us navigate the world so we are not experiencing poverty. Most of us are in poverty because the system is designed to keep us from being successful. The biggest barrier to success is the job interview process. The current system is designed against how our brains work. You are asking us to do things we simply cannot do. Can we research how to make our lives better rather than focusing on a "cure" or how to "change us." You can't "change" a broken arm. You treat a broken arm. You can't "change" being in a wheelchair. You create an environment where people in wheelchairs can access the same places.
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Name	Shawna Strickland, American Epilepsy Society
Demographic	Representative of advocacy organization
Response	a. Additional research is needed in the following areas to help address co-occurring conditions for people with autism: b. Identifying the EEG markers for diagnosing the onset of autism at the earliest possible age c. Identifying biomarkers in evaluating seizures in autism. This could include EEG, MEG, etc. Identifying the presence of epilepsy and instituting strategies to minimize progression could help in minimizing long term neurocognitive sequelae in patients. d. Establishing criteria/ biomarkers for identifying psychiatric conditions in children with autism. Additional research falling under this umbrella includes developing a structured format for identifying autism in youth with intellectual disability, identifying overlap in symptoms in autism and schizophrenia in youth, differentiating tics from stimming behaviors individuals being evaluated for autism, and identifying eating disorders in autism (when symptoms of anorexia and sensory sensitivities (i.e., food textures) overlap).
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Name	Sheila Bell
Demographic	Family member of an autistic individual
Response	Research and strategies to work with PDA autistic individuals and autistic individuals in burnout. Research on autism in girls vs boys and updated diagnostic tools to catch it in girls sooner.
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Name	Sheila Judge Leonard
Demographic	Family member of an autistic individual
Response	Research into effective ways to help ASD people reduce sensory overload and manage emotional stress so that they can more comfortably exist in the society
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Name	Shelby crane
Demographic	Autistic individual; Family member of an autistic individual
Response	More studies on female toddlers, children, adolescents, teens and adults . Most of us don't get diagnosed until it's to late for us to receive help resulting in ruined futures because they lack the diagnosis to receive help in school to be successful. Having classes tailored towards the way ASD minds learn in public schools could raise graduation rates most schools would rather bulky kids out of the school vs take time to help.
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Name	Shelby Shifflet
Demographic	Autistic individual
Response	Research into autistic needs to help us fulfill them ourselves, along with making a society more accessible for autistics. Crowds, with people and cars alike, cause us to remain at home because buying groceries and getting book from the library can be too overbearing. Doing just one of those tasks can cause an autistic, from my experience, to spiral into a depression.
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Name	Shellie Rubin, speech language pathologist
Demographic	Service provider, health provider, or educator
Response	I do not know, that is not an area I am comfortable with offering thoughts.
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Name	Shelly Glennon
Demographic	Family member of an autistic individual
Response	More research on PDA please! And more broad communication on what PDA is, how to deal with it in therapeutic, school, and home environments.
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Name	Shelly Moss, Atypical
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Genetic testing and researching the genetics, assessment should come with assessing known co-occuring cases and general health studies of gut health, gut-brain link in autism, absorption and malnutrition issues, sleep issues and how sleep deprivation make other conditions worse .
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Name	Shelly Witte
Demographic	Family member of an autistic individual
Response	We need better ways to teach autistic students. Not all schools have autism only classrooms. Do students taught in these classrooms fair better? How can we push this across the country?
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Name	Sher DeGenova MS CCC-SLP, Flemington-Raritan School District, NJ
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Doctors, specifically specialists in psychiatry, neurology and developmental studies must do better in treating individuals with autism in order to know them and help them. Autism must be included in medical school curriculums. Specialists in other areas (psychologists, pediatricians, social workers, LDTCs, Speech and Language pathologists) must equally be involved.
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Name	Sheri Mills, Prader-Willi Association USA
Demographic	Family member of an autistic individual
Response
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Name	Shiloh
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Looking into PTSD, Anxiety treatments that are effective and coping skills for demand avoidance and executive functioning.
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Name	Shonda
Demographic	Family member of an autistic individual
Response
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Name	Simcha Weinstein, NYADD & FTNYS
Demographic	Family member of an autistic individual; Other
Response	This means that our systems must be structured to distinguish between neurotypical and neurodivergent needs — and accommodate them accordingly. It means understanding that autistic youth are often unable to express themselves in the way neurotypical kids are and recognizing that autistic meltdowns are usually the result of unmet needs. It means adapting our existing teen mental health resources — including suicide prevention resources and screening and intervention tools — to accommodate the evidence-based mental health needs of neurodivergent populations. Recognizing the intersection of neurodiversity and mental health is paramount. Lisa Morgan M.Ed. CAS, a board-certified Autism Specialist and suicidologist, writes: "An autistic person is not a neurotypical person with a little autism. Autistic people have a different brain. Their brain is structured differently. They think, communicate, and experience the world differently, so they need support that meets their needs, not standardized, evidence-based, best practice support for non-autistic people."
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Name	Sleep Research Society
Demographic	Other
Response
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Name	Sloane Walters
Demographic	Autistic individual
Response	How autism presents in females needs to be researched more. Too many girls go under the radar until they’re adults who cannot function due to doctors using male diagnostic criteria.
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Name	Sonia
Demographic	Family member of an autistic individual
Response
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Name	Sonja
Demographic	Autistic individual; Family member of an autistic individual
Response	Health provider bias and Autism (ignoring, dismissing, or making incorrect assumptions about physical health symptoms in autistic people), Co-occurence of Auto-immune condtions and autism, the effect of chronic stress and anxiety in Autistic people and how it relates to physical health conditions, the efficacy of treatments to lower anxiety, rectivity, fight/flight, cortisol, on autism and co-occuring mental health conditions, vagal nerve interventions and autism and co-occuring medical conditions.
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Name	Special needs mom
Demographic	Family member of an autistic individual
Response	More non-white families need to be studied. More families that have girls with autism need to be studied as well.
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Name	Stacey Senn
Demographic	Family member of an autistic individual
Response	More research on Pathological Demand Avoidance since strategies are so vastly different than typical strategies used with autism. Without research, educational settings are difficult to access because administrators refuse to make accommodations for something that is not research backed.
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Name	Stanley Jaskiewicz, Parent of adult child with autism
Demographic	Family member of an autistic individual
Response	1) Effective training for persons with autism on managing anxiety. 2) Promotion of workplace interventions to promote hiring of persons with autism, accommodation of their disability, and, most importantly, employer training to support and retain employees with autism.
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Name	Stephanie
Demographic	Autistic individual
Response
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Name	Stephanie Dulawa, UCSD
Demographic	Family member of an autistic individual; Researcher
Response	more genetic testing more drug trials find biomarkers
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Name	Stephanie Ranno
Demographic	Family member of an autistic individual
Response	We need to take a full-system, integrated medicine approach as well as highlight other non-drug related therapeutics that can help with the challenges.
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Name	Stephen Silva
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Steve
Demographic	Autistic individual
Response	A simple list of commonly co-occurring conditions would be a good start...
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Name	Steven Lunseth
Demographic	Autistic individual
Response
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Name	Stevie Aubuchon-Mendoza
Demographic	Autistic individual; Family member of an autistic individual
Response	More research on and for autistic adults and afab individuals.
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Name	Summer Bammes
Demographic	Autistic individual; Family member of an autistic individual
Response	Research sleep! Both in autistic individuals and in their households. Research the relationship between autism and chronic pain. Research the effectiveness of different accommodations in schools and workplaces, both for autistic people and for their peers, teachers, and managers.
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Name	Susan
Demographic	Autistic individual
Response	I would find training on communication for both those on the spectrum and nuerotypicals to be very helpful. More sensory friendly spaces would be wonderful as well. In addition better access to more comfortable clothing would be a boon.
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Name	Susan A. Fowler, PhD, University of Illinois, College of Education
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Post education resources for young adults who are not being served by Vocational Rehabilitation Services or traditional DD services and are unable to attend usual trade courses or community college without supports provided when enrolled in k-12 education. The loss of all supports typically provided through an IEP must be recognized and included in future planning documents that have legal standing to support the future employment and steps toward community living of all people with autism. Research should identify exemplary programs and how they work, are funded and supported and we need R&D funds to support the development of post education work and life programs to support and increase moves toward independence for those with autism. Family members (parents in particular) may not outlive those with autism and the loss of private or family support can leave them without resources in their communities.
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Name	Susan Sigerseth, Retired Autism Proffessional
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	How much time and support it takes to make sure a person with ASD is comfortable and able to perform in a new environment - school, work, social settings.
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Name	Susannah Fields, Parent
Demographic	Family member of an autistic individual
Response	Hospitals: Research the need for psychiatric units that also address the autism factor, not just the bipolar or adhd. Govt Agencies: Research ways to educate decision makers that lack of intellectual disabilities does not equal lack of need for services. Genetics: Research the correlation with genetic Ehlers-Danlos hypermobility syndrome. There is a subset in those with that syndrome who have multiple psychiatric comorbidities. Psychiatrists: Teach doctors to quit saying, “It’s so rare”. Even though things are going very wrong very quickly. Schools: Research into how to best support bright but severely affected kids. My daughter hates being lumped in with those who also have intellectual disabilities - she says she feels like a ‘showoff’ for being bright when in those groups - and just shuts down.
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Name	Suzanne
Demographic	Family member of an autistic individual
Response	There should be more done genetically, and if stem-cells are proven to help some of these co-occurring conditions that come with autism. Imagine, if stem cells is something we could utilize in treatment early on in a diagnosed child’s life? The possibilities that exist here need to be better understood and tested. Then provided and covered by insurance.
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Name	Sym Rankin RN, APRN, CRNA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Research into the insane practice of vaccines during pregnancy, the effect of double doses of antibiotics before the incision is made and the baby is delivered in a c section. It Research into the insane practice of vaccinating a baby within and hour of birth with a vaccine for sexual transmitted diseases and drugs. What effect the aluminum has on the infants brain and immune system? Studies about all the vaccines given at 2, 4, and 6 months before the immune system is fully developed. Studies about the effects of giving a vaccine with another vaccine that is a live virus vaccine. The package insert says not to give a live virus vaccine with others but it is done all the time.
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Name	T. Gittleman
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	Differentiating between ASD and OCPD, how ASD impacts AFAB/higher IQ folx differntly, gender dysphoria and ASD
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Name	Tanina Cadwell, Unaffiliated
Demographic	Autistic individual
Response	1. Burden Analyses for Late Diagnoses of Autism in Women: Societal pressures have made it much easier for us to fall “under the radar” when it comes to diagnosis, and we’ve lost years of resources and early development tools that have resulted in an innumerable number of mental and physical comorbidities as a result. Late diagnosis for women with autism has effects on the quality-of-life at the individual & population level, but also has innumerable effects socioeconomically. 2. Comprehensive Diagnostics for Women with AuDHD: Clinical diagnosis for women with autism (even ADHD, and especially AuDHD) is exceedingly difficult, and wrought with antiquated biases. 3. Tools for High Functioning, Level I Autistics: We need tools & resources for those “under cover” in the workforce / homestead. Many of us struggle with comparing ourselves to perform at the level of a neurotypical because we have no other quantitative / qualitative measure to compare ourselves to. Therapeutic approaches like CBT, exposure therapy, etc. can often be harmful to individuals with autism, while therapies more specialized to autistics are focused on Level II / Level III diagnoses. 4. Evaluating Misdiagnoses of Autism / AuDHD: Many of us struggle with misdiagnoses of bi-polar disorder, anxiety, depression, etc. This has led many of us through cycles of unhelpful medications / therapies, delayed our true diagnosis, and an extreme misrepresentation of autism (especially in women) nationally.
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Name	Tara
Demographic	Autistic individual
Response	Keep asking different groups of people about their experiences. Especially women, BIPOC, lgbtqia+ individuals. Not enough information because they are not getting the support they need.
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Name	Taylor Sweeting, Autism/ Marfan Syndrome Self-Advocate
Demographic	Autistic individual; Other
Response	To address this issue it first has to be established that each case of autism is truly unique, and no two cases are the same. One way to unlock an autistic person's potential is by utilizing their special interest(s). By using the special interest of the individual you can almost guarantee that you can have their complete undivided attention and that they will be engaged in the conversation at hand. The special interest can then be utilized to illustrate specific learning points and objectives (for example: if a child's special interest is trains use that to illustrate a math problem "if one train leaves from Boston and another train leaves New York and they are both going to New Jersey how many trains will end up in New Jersey?"
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Name	Tempest
Demographic	Autistic individual
Response	More research on Autism in BIPOC communities, the LGBT community, as well as for women. These communities are under represented in overall Autism research, especially BIPOC communities. Research into the way co-morbid Autism and ADHD present as the two often contradict and the AuDHD (Autism and ADHD) person often may not relate to a purely Autistic or purely ADHD experience as their comorbidity interact in such a way that makes their AuDHD experience unique.
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Name	Tetyana Davis
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response
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Name	TG
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Thomas
Demographic	Autistic individual
Response	Speak more to low support needs autistic people. The research is way too focused on childhood. Most high masking autistic adults do not realize until they get burned out. We've always felt something was wrong with us so we kept quiet.
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Name	Tiana
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Lived experience research consulted/designed by and run by autistic individuals to guide change within different communities of autistic people such as young, older, rural, lgbtiqa+ etc. Also more research about neuro affirming supports and supporting those with PDA presentation within different settings
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Name	Tiffany Marie Ryan (Brittingham)
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization; Other
Response	Research should be led by autistic people with intersectional lived experiences. This is URGENT.
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Name	Tosha Brothers
Demographic	Autistic individual
Response
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Name	Tova
Demographic	Family member of an autistic individual
Response	PDA
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Name	Tracey MacDonald, Profound Autism Alliance
Demographic	Family member of an autistic individual
Response	Cross functional teams that speak to each other. More experts available. Shorter wait times ( currently waiting 6-24 months for appts). Access to crisis care beyond emergency rooms/police - once a situation gets to this level, it is difficult to get our son to comply with emergency personnel.
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Name	Tracy Dixon-Salazar, Lennox-Gastaut Syndrome (LGS) Foundation
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Further research is needed to understand what type of live individuals with autism, epilepsy and IDD are experiencing and what the impact is on the carer.
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Name	Tracy Johnston
Demographic	Family member of an autistic individual
Response	Lots -- until there is real help readily available
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Name	Trayle
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Research with a critical lens that questions the status quo, research with and BY autistic researchers.
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Name	Ty Shields
Demographic	Family member of an autistic individual
Response	Letting the autistic community have more say with the research. Don't just see what "works", such as in the case of ABA; also ask how they feel and what effects such things have on their mental health.
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Name	Val
Demographic	Autistic individual; Family member of an autistic individual
Response	Further research on PDA with a view to inclusion as a diagnosis within ICD and DSM, that will allow educators and social services an understanding of the impacts of this condition and provides genuinely helpful advice and interventions that support people with this condition
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Name	Val Luther
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Research about Pathological Demand Avoidance and researching updated, Autistic-led training for health care professions (including Developmental Pediatricians!)
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Name	Valerie Beckwith
Demographic	Autistic individual
Response
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Name	Valerie W, Self and child
Demographic	Family member of an autistic individual
Response	Speak to the schools ask why the animosity. Why are us parents asking for help always met with such tremendous push back. Especially when our children are high functioning and need to be with other children that function on a normal level and not in special needs classes. Do better.
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Name	Vanessa Farrand
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Addressing the differences between male and females with autism. It can present so differently. Educating others about how broad the spectrum is. More supports in schools to help.
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Name	Vanessa Smith
Demographic	Family member of an autistic individual
Response	I would like to see more research into PDA as a possible autistic profile and more resources to help people with this profile.
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Name	Vee Crowe
Demographic	Autistic individual
Response	There needs to be more research into why caffeine and other stimulants affect us differently, more research into autism symptoms amongst ALL genders(get as many as possible, Cis and Trans, and include POC) to see why autism could present differently in people based on gender and race(social factors. always social factors), why we need to build a society where autistics who can work CAN, research into uncommon autistic traits and why these are often over looked or underdiscussed outside of ASD circles.
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Name	Vicki Markowskin, Mother
Demographic	Family member of an autistic individual
Response	How to alleviate anxiety , provide needed therapies . Earlier and better diagnosis .
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Name	Vicky Scollay , Parent
Demographic	Family member of an autistic individual
Response	Research into Pathological Demand Avoidance
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Name	Victoria Miller, TCCMO
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Effect of diet/specific foods or additives, impact of overstimulation or soothing behaviors utilizing screen time/electronics
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Name	Vienna
Demographic	Family member of an autistic individual
Response	Metabolism, connection between brain and gut and overall inflammation in the body and the need to make it accessible
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Name	Viki Quirk
Demographic	Family member of an autistic individual
Response	A deep dive into Pathological Demand Avoidance and strategies to support children with this presentation and their parents. There needs to be more therapists and other professionals who understand this presentation and can help parents learn how to accommodate their child's unique nervous system disability.
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Name	Viktoriia
Demographic	Autistic individual
Response
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Name	Virginia Fox
Demographic	Autistic individual
Response	We need to understand the overlap of things like EDs/connective tissue conditions, POTS, etc. we also need to research how differences in processing in autistic people (including under/over registration of stimuli and neural integration miscommunications) may be connected to so many co-occurring conditions and may require a modified treatment plan for the co-occurring conditions when they’re present in an autistic person
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Name	Vista autism services
Demographic	Service provider, health provider, or educator
Response
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Name	Vittoria Cristoferi, Medico Neuropsichiatra infantile
Demographic	Service provider, health provider, or educator
Response	La ricerca sulle cause e le conseguenze dell'impossibilità di esprimere il proprio pensiero con la voce è troppo limitata. E le modalità alternative sono limitate a immagini e ai segni e non alla scrittura [Translation: Research on the causes and consequences of the inability to express one's thoughts with the voice is too limited. And the alternative modes are limited to images and signs and not to writing]
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Name	Walter Newsom, Newsom Psychological
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Any additional research should focus on the priorities of Autistic people. So much money is spent on things that have little meaning or benefit to Autistic people that it is just shameful.
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Name	Whitney Lee, Neurodiverse UT
Demographic	Autistic individual; Other
Response	Problems with conflating autism with co -occuring conditions (like saying autism is bad becasue a lot of Autistic people have epilepsy). Systemic issues like healthcare disparitie. Research in to drug addiction and homelessness.
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Name	Whitney Storey, University of Louisiana at Lafayette
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Where to begin - the US needs to catch up with other places in research on "atypical" autism (e.g., autism in women, autism in people of color, autism in adults, etc.). We also need research on the prevalence of autism within these more realistic bounds (apart from the DSM) and across the lifespan. So many adults are being diagnosed and needed help but didn't receive it in childhood because they didn't fit the stereotype and/or because they were so good at masking. We also need research on the prevalence of autism in the justice system - preliminary research suggests that the rates of ND among justice-involved folks are higher than expected, especially those who are undiagnosed ND. The system is not set up to work for and with ND people, furthering their trauma and limiting their ability to effectively rehabilitate.
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Name	Whitney Voltz
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Research that centers the lived experience and knowledge of actually autistic individuals.
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Name	Wilhelmina murray
Demographic	Family member of an autistic individual
Response	Anticipation of aggressive response (monitoring blood pressure, brain wave changes)
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Name	William Bryan
Demographic	Autistic individual; Family member of an autistic individual
Response	Other ways to test for/perhaps treat connective tissue disorders. Particularly Ehlers-Danlos. Hypermobile cases seem to have a wide gamut themselves from blatantly obvious to deceptively mild. Neurological mapping of individuals with the condition(s) to increase sample size to better understand.
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Name	William Spell
Demographic	Autistic individual
Response
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Name	William Stillman
Demographic	Autistic individual; Researcher; Other
Response	Not research, education of those who are operating with a belief in myths and stereotypes about individuals with autism being void, vacant and unaware.
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Name	Wyatt Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	I believe it would be helpful to know why these disorders and disabilities tend to overlap with Autism, better understanding would be somewhat comforting at least and would open up the world of treatments and prevention. I don't want to eradicate autism but I would want my children to have less issues than I.
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Name	Wylder, Autistic
Demographic	Autistic individual
Response	More information needs to be gathered on co-occuring conditions of all types, and finding the best ways to support people with autism and other conditions at the same time
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Name	Yasmine
Demographic	Autistic individual; Family member of an autistic individual
Response	a wide spread of research needs to be done that includes people who are autistic with various different needs, ethnic backgrounds, genders, and sexualities. Autism isn’t black and white and researchers need to understand the complexity of it. Better research lead by autistic people on co-conditions and needed support would be great.
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Name	Yesenia Aviles, Caregiver
Demographic	Family member of an autistic individual
Response	I think we need to collectively focus more on brain function relating to gut, ineffective medications making those behaviors worse, and also lack of training as well in that specific area.
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Name	Zachary Kopel
Demographic	Autistic individual
Response	The link between epilepsy and autism Effects of applied behavior analysis therapy and ptsd
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Co occurring conditions are clearly important, but these questions are clearly leaning toward the robust body of knowledge about men/boys. Focus on better understanding of women/girls, and stop leaving us in the dust as if we don't matter. We have Autism too.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The role of off-label psychiatric medication to treat conditions co-extant with severe autism, developmental disability, etc. needs to be re-examined. The medications are given ostensibly to treat mental disorders that are only co-occurring with autism, such as maladaptive behavior, when they may in fact be reactions to poor care conditions, regimentation, etc. These medications may create knock-on effects, e.g. morbid weight gain, permanent tic disorders, etc. that have not been adequately studied. These effects have led to permanent co-occurring physical and psychological conditions. Research should be done to identify and address co-occurring conditions that result from inadequate staffing, training, and housing. There is a desperate shortage of direct support professionals (DSPs) and job coaches, many of whom don’t stay long enough to learn our child’s behavior or how he communicates. We need to realize greater efficiency in how they are employed. Using smart-home monitoring technologies coupled with artificial intelligence (AI) could assist in monitoring resident safety (e.g. preventing elopement) and improving communications (e.g. interpreting non-verbal communication and “behavior as communication). We also need to research how technology can assist in supporting the non-verbal. A personal AI could study our child’s behavior and routines, learn his communication style, and act as translator. Privacy would be an issue here but we feel it is our only option.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Research on the long-term support and service needs of adults with ASD is extremely limited. This is especially true for adults who do not have co-occurring ID. I work at a University center that offers evidence based social skills training for adolescents and their families. However, the evidence base for social skills training interventions for adults across the IQ spectrum is very limited. Access to social skills training for adults without ID is very limited in my community. A few very expensive programs are available but the costs are far out of range for most adults with ASD. There is not much research on employment outcomes for adults past the transition age group. Because ASD dx has only been available in the US for a couple of decades, many adults with ASD have never had a formal dx. Given the pervasive shortage of assessment resources for people with ASD of all ages, it seems unlikely that this situation will change, especially for people born before 1990 or so. This makes research more challenging for middle age and older adults with ASD (especially those who do not have ID).
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Additional research is needed to help education doctors, therapists, teachers and society. I'm not at all worried about the cause. I need help finding treatment and supports now. For school and later for work & living supports. I think ODD and DMDD need to be reexamined. My son was previous diagnosed with DMDD. I have a friend whose son is diagnosed with ODD. Both of our kids present in a similar fashion. Neither "treatment" for ODD or DMDD is effective for our kids. These approaches have the opposite effect. The suggestions of reward charts and printed schedules are laughable. They have the opposite of the intended impact on my son. Professional need to be educated about autism with a PDA profile. Professionals are still refusing to diagnose kids with autism because they make eye contact. My kid learned how to fake eye contact before he entered school. The lack of professional understanding is appalling and is doing a diservice to our childen and society. Once a kid is labeled with ODD or DMDD, even parents assume that they've got a "bad" kid on their hands. The facebook support groups are full of parents with no hope and no supports. Parents and professionals need education about different parenting approaches.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	How to train medical providers that a)more than one thing can be a problem at the same time, b)sometimes a spade isn't a spade, c) doing more tests earlier decreases negative outcomes, and d) believe women, people of color, and other under-appreciated people when they say something is wrong. At the same time, an autistic person may be so used to an issue they don't know it's a problem anymore. MDs, APNs, nurse practitioners, and other health providers need to be taught how to be diagnosticians again instead of antibiotic pushers, pain minimizers, and those that automatically do referrals to psych when they don't want to deal with something. Medical providers are a main challenge for autistic people, especially those with co-occurring conditions and the answer is to make medical providers better. So please research how the medical profession can do that.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	There are huge gaps in providing needed supports and services for individuals with autism that have brain- based/psychotic disorders such as schizophrenia, bipolar 1, and major depressive disorders. There is a sizable group of individuals that are highly stigmatized and shuffled between systems of care. Some of these individuals have ID, some do not. All of these individuals are greatly impacted and have a great need for supports and services. Some of them also have SUD.
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Name	Anonymous
Demographic	Autistic individual
Response	Although we do not yet fully understand the biological root of Autism, it is clear we tend to suffer with many physical manifestations outside of the behaviors we display (which is just the "tip of the iceberg"). I can only speak for my experience, but I hope to see research in the following: 1. Connective tissue disorders and how they are linked to ASD (see the Connectivome Theory of ASD: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8892379/) 2. Mast Cell Activation Syndrome 3. Dysautonomia 4. Complex Post-Traumatic Stress Disorder (which can exacerbate physical ailments)
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Name	Anonymous
Demographic	Autistic individual
Response	More research is needed on adults, especially adult women who were not diagnosed as a child. Need a broader understanding of comorbidities related to autistic genes so these conditions can be recognized sooner than later in our lives. High masking females are overlooked and need daily support even if they are considered high functioning and appear "normal", we need data collected from this part of the autistic population
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Name	Anonymous
Demographic	None Indicated
Response	• Staff training methods • Supporting individuals with ASD across settings in the community, Adult Day Services, work, etc. • Transitional age of services – School age to Adulthood • Identifying evidence-based diagnostic and therapeutic interventions. • Exploring genetic and environmental factors influencing co-occurrence
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I believe more research needs to be done in regards to medication for anxiety, OCD, and challenging behaviors, especially in children and young adults. Many interventions for these behaviors involve some kind of talk-therapy, which obviously won't work for nonverbal individuals - especially those with intellectual disability. So medication is often the best option. However, finding the right medications with the least side-effects can be very difficult. At one point our son was tested to see what medications would match him genetically and which to avoid. This was helpful but not perfect. It would be great to explore this research further.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	AUTISM IN FEMALES. So many of us have slipped through the cracks. Way too many females go undiagnosed.
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Name	Anonymous
Demographic	Autistic individual
Response	I think more research into into autistic people's relationship with food. The books I find about the subject tend to pseudo-scientific and focused on "curing" autism on some level. I think we would benefit from research about the connection between food and sensory and/or gastrointestinal issues with the goal of giving autistic people more tools to monitor their health.
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Name	Anonymous
Demographic	Autistic individual
Response	Research into causes of issues
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Mental health issues Adaptive to work
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research on effective.models caregivers can implement at home and in community settings to help navigate symptoms, ow to reduce caregiver burnout.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The development of tools to make treatment plans (psychological and medical) that better address all challenges of a autistic person are needed. The tool would need to include best practice treatment recommendations based on research.
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Name	Anonymous
Demographic	Autistic individual
Response	Research into ways that non-autistic people can understand and include autistic people in complex social situations, rather than focusing on requiring autistic people to learn to mask and pretend to be "normal".
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Name	Anonymous
Demographic	Autistic individual
Response	There needs to be a lot more research done on autism with autistic people as advisors or consultants. I was trying to write a paper in college about the comorbidity of CPTSD and autism, and there wasn't a single paper that even attempted to link autistic burnout to CPSTD despite that being a fairly easy experience to see within myself and other autistic communities I follow on various social media platforms.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Infant and prenatal behaviors of fetus for predictive diagnostics
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Thyroid axis and autoimmune interactions are a critical deadzone for understanding, while genetic and peroxisomal concerns seem clearly implicated, this is not well addressed.
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Name	Anonymous
Demographic	Researcher
Response	The 3 questions in the survey posed to address 3 categories of co-occurring conditions in autistic people speaks to the core challenge which is the multiplicity of co-occurring physical, mental and developmental conditions in the same person. Focusing on a single condition/category misses the bigger picture of multiple, diverse conditions which poses the most significant challenge. Further work is needed to identify opportunities for secondary and tertiary prevention targeting co-occurring conditions over the life course. There must be better understanding of the dynamic patterns of emergence of the co-occurring conditions (patterns over time as well as associated risk factors/mediators/moderators of the patterns of emergence of potentially multiple conditions over time), including investigation of the genetic underpinnings (including g-e studies). Further work is also needed to better understand the sources of resilience in autistic people because the patterns of co-occurring conditions and their impact on health, well being and quality of life in autistic people are not uniform. Improved understanding of the factors associated with better outcomes among autistic people is under-studied. Further research into improving health literacy of autistic people and their families and health communication with care providers may be an early step in improving outcomes in the context of co-occurring conditions (one means of secondary and tertiary prevention)
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Name	Anonymous
Demographic	Researcher
Response	To identify caregivers' priorities for intervention endpoints To identify co-occurring conditions for which the improvement will enhance the overall quality of life of individuals on the spectrum
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Intersectionality between autism and adoption. More research on how autistic traits and characteristics manifest in BIPOC and LGBTQIA2+ communities.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Firstly, including participants with co-occurring conditions in the first place is a great start. Co-occurring physical, medical conditions are often overlooked by doctors who place everything in the “it’s just the autism” basket, leaving GI disorders, allergies, and possibly autoimmune disorders unaddressed. Autism and anxiety is huge because it can lead to other mental health disorders like eating disorders, depression and OCD. Please do more studies on those with more severe autism. The more severe the autism, it seems the more likely they are to have co-occurring physical and mental health conditions. But since they are often less verbal, they get less help.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Determine what causes gastrointestinal problems in autistic people. Determine better methods of overcoming food aversions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I beg you to develop/fund/advocate for research studies of the Pathological Demand Avoidance (PDA) presentation of autism – for child, adolescent, young adult, and adult stages. PDA is an official diagnosis in the UK, but it is not in the American DSM. Please work to get it accepted as a diagnosis in the DSM! Our 19 year was not diagnosed with autism until age 12. When we would ask doctors and therapists whether he may be autistic, we were told he had good eye contact so he wasn’t autistic, although they did recommend autism programs because he did have a very complex presentation that defied diagnosis. Last year I saw the term PDA and did an online search. I found a description on the UK PDA Society web site and was shocked to find that 5 of the 6 key features (except role play) perfectly described my son and the characteristics that professionals found so “complex” about him. Over the past year we have delved deeply into learning about PDA from the UK PDA Society, the nascent PDA North America organization, and various US-based PDA coaches and support groups. What we have learned has fundamentally made a difference to the quality of life for our son and our family. But there is so much more understanding, insight, guidance, and professional support we need, especially as he encounters the challenges of going to college and becoming an adult. We need the professionals he will need support from to accept, understand, and be able to work successfully with someone with PDA.
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Name	Anonymous
Demographic	Autistic individual
Response	There needs to be a way of ingesting and supporting research and analysis of individuals that combines research already done and to incorporate autistic and other neurodivergents into the medical community. It needs to not be seen or treated as a disabling thing as much so that those with different neurologies are able to contribute and be part of the discussion. Yes it is challenging at best but in no way is it invalidating. The best therapists for NDs are themselves NDs, for example. Autistics should be the forefront of autistic research; this is necessarily true for many reasons.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Recognition of PDA (Pathological Demand Avoidance) within the USA How to supply the public educational system with collaborative, child-led education, so they are more able to learn and stay in the school building. Aid with increasing the amount of support- certified, Autistic specific, psychiatrists, psychologists and educators.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	To be clear what the differences are/similarities are between co-occuring conditions Acknowledging PDA exists and the impact this has, especially for girls
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	How to feasibly educate PDA autistic children in a school setting. How to appropriately support parents if and in the times when the PDA autistic child cannot access the school setting.
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Name	Anonymous
Demographic	Autistic individual
Response	Research why non Autistic people hate us. If we weren't hated for just simply existing, question number two wouldn't need to be asked. We wouldn't have anxiety from constant masking. Constantly surveying our surroundings to try to blend in just to avoid being seen for who we really are. Living in fear of making mistakes that we don't even know are mistakes. We wouldn't be so depressed if we were actually loved the way we are. We wouldn't have astronomically high suicide rates if we were just accepted as equal members of society, not any different from anyone else. At some point or another, we didn't know we were any different until an allistic person told us we were different. Autism awareness is not enough, we need equality.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Study sleep, pathological demand avoidance, self diagnosis
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	You need to focus on PDA, it is such a challenging condition and there is nowhere near enough research or understanding. As a parent of a PDAer, it has been an extremely challenging time. My son is extremely impressionable and as such has been drawn into so many problematic situations. We simply did not have the tools or understanding to support him and it appears nobody does for kids with PDA. As a result he has declined into alcoholism and drug use to self medicate. He is 19 years old.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	As much data should be collected as possible regarding co-occurring conditions with autism such as hypermobility and connective tissue disorders. This evidence will help doctors to be aware and look for these disorders together because a lot of people suffer from either or both greatly.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	All areas that might address extreme levels of anxiety/depression and rumination.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I believe long COVID to be a largely autoimmune condition co-occurring with autism. The healthcare system is, at present, unable to do anything in response to one of the greatest mass disabling events in modern history.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Effective treatment and/or a cure for long COVID is crucial
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Additional research needed to address co-occurring conditions for autistic people, substance abuse, PTSD, diseases and child abuse, abandonment of a parent and other trauma. Trauma short circuits pathways in the brain. science says new pathways can build back in the brain over time and heal in part pathways.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA!! It’s in its infancy research wise yet far more commonplace than understood at present. Needs and deserves a lot more research
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More research into PDA and burnout. How masking causes burnout How the education system causes significant distress of neurodivergent kids leading to burnout, self harm or suicide.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Better technology may provide ways to measure anxiety and stress, leading to more accurate diagnoses and treatment and new methods to reduce anxiety and stress .
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research about treatment of PDA
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Autism + Adoption
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More research is required for pathological demand avoidance (PDA) which many autistic people show a profile of. It causes significant issues and can present very differently to a lot of advice currently available for autistic people. Also the link of ADHD and autism
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Much more research, especially provided by Autistic voices - the CDC, HealthyChildren.org, and NIH have little to no information available that was clearly drawn from Autistic voices.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Please devote more research to developed autism measures that are sensitive for girls, especially “high functioning” girls. My daughter wouldn’t have a diagnosis or any supports (which have been life changing for her) if I had listened to the first doctor who evaluated her using nothing more than the “gold standard” ADOS. Please, if you are a woman with some sort of decision making power here, please push for more funding for research autism in girls (and more research on PDA).
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Please focus on defining and validating PDA - Pathological Demand Avoidance. It is recognized in the UK, but not in North America, at least not formally, and therefore getting supports is nearly impossible. But it is debilitating for families, children, and especially adults in employment and education.
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Name	Anonymous
Demographic	Autistic individual
Response	Research autism in women, and the ways medications affect our bodies. Much of the research is so male-centric, and autism in girls is horribly under-diagnosed. Partly due to outright misconceptions and double standards by doctors with outdated ideas of the condition. (the same symptoms will get a boy an autism diagnosis, but a girl bipolar/BPD for example) The other reason is that we’re taught to be very high-masking from a young age. “Boys will be boys”, so they’re allowed to act loud and weird for a little longer. Meanwhile girls must be quiet, responsible and obedient from the youngest age. For this and other reasons, autism often manifests differently in girls compared to the stereotype. More research and education MUST be done. I also think cannabis research on autism symptoms looks promising, whether that be CBD or THC or whatever else. I know cannabis isn’t a cure-all and not everyone reacts well to it, but with all the other things it treats, maybe there’s something promising?
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	We should clarify what we mean by “autism.” The heterogeneity of the population with an autism diagnosis makes it hard to determine who is included and what they need. The practice of diagnosing individuals with major genetic conditions associated with ID (e.g. 22q deletion) with autism further compounds this because these conditions create different needs. The fact that an ASD diagnosis renders a person eligible for more services creates further complication and inequity. The high ASD prevalence rate reported for California (currently 1 in 22 children) suggests over-diagnosing and makes it difficult to determine who needs which services. We recommend: 1) Ensuring that autistic children diagnosed with global developmental delay receive a cognitive assessment by age 6 years. 2) Continuing to research differences between individuals with major genetic disorders and those with idiopathic autism, particularly those with autism and average/above average cognitive abilities. The populations with genetic syndromes or “syndromic autism” often have multiple medical and behavioral health needs which are unmet. 3) Ensuring that diagnostic assessments are conducted by well-trained professionals who can provide differential diagnostic assessments. The movement towards early diagnosis using technology may increase already high prevalence rates in California and make it more difficult to determine co-occurring conditions and provide appropriate services.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	teaching psychiatrists specializing in adults with the increasing diagnosis rates at later age (i was diagnosed at 18 and many thought i am factitious due to physical problems and extreme side effects from medications such as ssri and neuropeltics [extreme irritability, restless leg syndrome or extreme tiredness]) as well as family doctors and pediatrics. For example my doctors keep telling me i have hypochondria even though gastrointernal disorders have high co morbidity with autism.
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Name	Anonymous
Demographic	Autistic individual
Response	So much that it is difficult to quantify. For example, these questions. The request questions are written poorly regarding autistic input. They are too open-ended and nonspecific. I spent weeks gathering my thoughts for this request and I still feel like I’m doing it wrong. If researchers feel they cannot write questions for the autistic audience, then they should hire autistic people. So much information about autism is really from an allistic viewpoint that it’s often unhelpful to us. Even autistic testing is from an allistic perspective. Symptoms and behaviors that bother allistics are emphasized without considering why autistics have them. Autism research needs to be autistic-led. The spectrum is too large and co-occurring disorders too prevalent to rely solely on the research of people who do not experience them. We need better research on how to support independent autistic adults. Many of us work full time and live on the edge of burnout to do so, as we don't qualify for supports. We are too disabled to live full independent lives, but not disabled enough to get help.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological Deman Avoidance needs to be researched here in the United States. Many people are impacted by this diagnosis and are not able to receive the needed and appropriate diagnosis, understanding, or treatments due to it not being recognized as a co-occurring condition.
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Name	Anonymous
Demographic	Autistic individual
Response	More research into how autism effects young girls, and adult women differently then young boys and men, so less autistic women are misdiagnosed in the future. More research on how autism may look different in children vs adults, so more adults who weren't diagnosed as children can get a proper diagnosis now, later in life.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Pathological demand Avoidance (PDA) is the biggest factor in my child’s autism. His hair trigger nervous system leads to extreme anxiety and panic attacks. This is something that needs to be researched immediately. There are no medical, educational or community supports. The only support we have found is through grassroot parents/families and adults that are living with PDA, PDA North America and PDA UK society. This is an underserved and hidden part of the disability that needs to be researched and funded to support our families futures.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research done on Pathological Demand Avoidance autism!!
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Ehlers-Danlos and other connective tissue disorders need to be researched more. Also, why a large subset of the autistic population has very high levels of serotonin circulating in our blood and the impact of this also needs to be researched further.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research in pathological demand avoidance
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	More research on pathological demand avoidance (PDA)
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Name	Anonymous
Demographic	Autistic individual
Response	Drug sensitivities Effectiveness of traditional modes of therapy
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I wish there was more information on pathological demand avoidance (PDA) as a profile of autism.
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Name	Anonymous
Demographic	Autistic individual
Response	More research is needed into how to update scales of pain, fatigue, and other internal symptoms to accurately communicate autistic experiences and help diagnose co-occurring conditions accurately.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	1) Much more research into the PDA profile of autism so that it is more widely understood and honored. 2) Much more research into effective and tailored mental health treatments specifically for autistic individuals and the full spectrum of autistic people (including PDA), whose brains work in different ways - E.g., rather than CBT, more research is starting to emerge that approaches like ACT (Acceptance and Commitment Therapy) are more effective for autistics.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	pathological demand avoidance profile - effects on parents' well-being, parenting styles training, educational implications
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Severe anxiety or a large spectrum of pathological demand avoidance
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	PDA and co-morb with ADHD
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	research on people of color, women, LGBTQ
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Support for differential diagnoses to identify kids with co-ocurring ASD, PDA, DMDD, GAD, and/or BPD and better understanding of how these neurodivergent dimensions manifest in a unique profile for each kid.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Research is needed to support medical school training. There are no pediatricians and very few psychiatrists in our area (Washington DC Metro) as of right now who specialize in treating autism in an affirming way. Research is also needed to support and treat these medical issues that are causing physical impairment.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Extensive research on PDA including dietary needs and genetic mutations
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	More research into PDA (pathological demand avoidance) as a legitimate co-occurring condition -- or even as a stand alone diagnosis. More research into how to settle overactive nervous systems when psychiatric meds are not doing the job (or are causing too many side effects). What adjunct therapies (not behaviorism based or ABA adjacent) are useful to help autistic folks regulate their emotions better? Is there a way for researchers to better understand and help mitigate the burnout/crashes that often occur for autistic teens when they hit puberty? A common theme seen across autism support groups is adolescents hitting rock bottom and burning out at the onset of puberty. Many fall into crisis. We need research into this ongoing and devastating phenomenon. What supports can we as a society put in place to prevent and to treat/support these kids and their families?
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Use the families to get info - we need the help. When I went to an autism event - the majority of booths were manned by parents of special needs kids that needed to start their own groups to get proper care. Make nationwide resource terminals for parents (like CARD currently in FL). Listen to what needs are Being unmet by those of us in the trenches- lip service and waitlists create children who grow up ill- equipped to be happy productive members of society
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	PDA needs to be researched, and clinicians and doctors need to be informed. Several specialists who have worked with my son have done more harm for him than good simply because they won’t acknowledge PDA due to the fact that it is not yet in the DSM-5. No child should have to suffer because adults are uninformed.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	How to build a safety net for autistic people, and how to build a common language between ND and NT people.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	How to make school accessible for PDA kids. Schooling is compulsory but not accessible, and it is causing harm to mental health. Specifically, research into: 1: Neurodiversity-affirming practices. How to teach autistic PDA students without trying to teach them they should not be autistic. Autism is a normal part of human diversity and a valid way to be human. Providing equitable access to education for autistic children should be the goal, not teaching neurotypical behaviors. Research is needed to develop methods, curricula, and guidelines for providing equitable access to education to autistic students. 2: Education practices specifically for PDA kids. Many of the “best practices” for neurotypical kids, and even for autistic kids without PDA, are not effective for PDA kids. Some even cause harm, increase stress and decrease accessibility. Education research into effective, inclusive, and supportive curriculum and instruction for PDA kids is needed. 3: Policies that support school success for autistic PDA kids. Fluctuating capacity (ability to do something one day but not another) is common with PDA. Currently attendance, behavior, and performance policies assume that students generally have the steady capacity- if they can do well in school on one day, they should be able to every day. This ignores a key part of the disability, and reduces accessibility. Research should examine how school policies can accommodate fluctuating capacity so autistic PDA kids can succeed.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Social and engagement activities to learn adaptive and tolerate and be a team players.
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Name	Anonymous
Demographic	Autistic individual
Response	How late diagnosed affects people How there are many conditions that combine with autism
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA Interest-based learning
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More research is certainly needed in the areas of PDA and Complex Motor Stereotypies - Intense Imagery Movements. I would certainly love to support with any research if this would be possible.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Further research on Pathological demand avoidance.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	We need research around autism with a PDA profile. In the us there is zero help and a fairly large community.
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Name	Anonymous
Demographic	Autistic individual
Response	Listen to autistic experiences rather than label us incorrectly. Autistic burnout is not depression Meltdowns are not nervous breakdowns or dramatic behaviour Masking is not manipulation Autism is not BPD
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Best treatment and management strategies for autistic people common concurring diagnoses including ADHD, particularly how this differs from standard advice. Barriers to accessibility of care.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological demand avoidance. Caregivers are drowning. Please help provide resources and spread awareness.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Pathological demand avoidance (pda) linked to autism should be much better understood and regarded as real. The autism spectrum in general could be much better mapped, also with regards to overlap with other neurodiversities.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	More research on PDA is desperately needed, as well as more research on service providers and parents knowledge and understanding of it.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The person needs whole person support so it’s vital we understand the co-occurring conditions as well as their Autism or PDA.
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Name	Anonymous
Demographic	Autistic individual
Response	There needs to be an entry on PDA in the DSM5 and more research on it. It’s so under diagnosed or misdiagnosed as ODD or something else when it’s something that effects me maybe even more than being autistic.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Adding pathological demand avoidance to the DSM-V. Children are being harmed and suffering greatly due to the lack of understanding of this condition. It is causing great harm not recognizing it in the USA
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research into PDA and how schools can cater for these individuals with low demand and anxiety-aware classrooms
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More appropriate diagnostic criteria to identify autism that’s not based on middle class white boys. More research into how incredibly disabling Pathological Demand Avoidance (PDA) is for individuals and how much this impacts on their nervous system and prevents them from carrying out activities they want to do and the crippling anxiety that comes with it
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
Response	Research into everything I have mentioned in the other questions, especially Ehlers Danlos, and the effects of society on autistic people, including how this affects anxiety and demand avoidance. The research should not pathologise autism or treat being autistic as a disorder. Instead it should accept that being autistic is a naturally occurring neurological difference. It should never look for ' cures' for autism or support aba. Autistic people do not need 'curing' of who they are, they need changes within society to create inclusivity.
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Name	Anonymous
Demographic	Autistic individual
Response	Inclusion education
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	More research into neurodiversity affirming care. Not treating autistics as a monolith. Impact and harms of ABA. Lack of resources to address PDA traits.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA.
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Name	Anonymous
Demographic	Autistic individual
Response	Research on Pathalogical Demand Avoidance!
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	We urgently require extensive research on PDA, it’s origins, potential treatments to alleviate the impact on the person and their family, most effective approaches and strategies for parents, educators and health professionals to utilise when supporting those with PDA profile.
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Name	Anonymous
Demographic	Autistic individual
Response	Thank you very much for NOT calling these conditions comorbid! They are simply co-occuring conditions, not a source of death, as the word morbid implies.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	more research is needed to identify the a-typical signs, for both individuals and doctors; so they are able to be identified quicker and supported without being gaslit or disbelieved. what training doctors receive about all ND diagnoses. how different co-occurring disabilities present in autistic compared to adhd, or compared to NT people, ask the patients what their experience is and how to help.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Start with adult autistic persons and really listen to their experiences.
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Name	Anonymous
Demographic	Autistic individual
Response	How many comorbidities autism is linked to
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	We don't yet understand the vastness of the spectrum itself - I'm positive it's much more prevalent than we know - so that seems to be the more pressing issue. How can we study the co-occuring conditions if we don't know enough to make sure the studies have a enough diversity and depth to their participant groups? We need to study mental health as it relates to autistic people living in a late-stage capitalist society; where so many of the struggles we face are directly related to the way society forces us to live. You need to study women and people of color to better understand how pain, hormones, sleep, digestion, connective tissue disorders are disrupting people's lives so greatly due the simple fact that the medical model doesn't have a clue what's going on or that it's connected. We need to study the experiences of autistic individuals navigating the medical world/healthcare industry; how, by this experience alone, is enough to create mental health problems on top of the physical ones. We need to study how female hormones wreak havoc on autistic women, causing fluctuations in pain, digestion, inflammation, sleep, mental health (and so much more) every day changing how they experience the world and their body. We need to study the internal experience of autistic people because only then can you really understand how they're experiencing their own pain/disability/difficulties.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	Far more research is needed in the co occurrence of autism and avoidant restrictive food intake disorder (ARFID)
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Research needed for personalized medicine and AI powered diagnostics which may be AI powered neuroradiology or something else to help diagnose other conditions whereby those conditions share similarities with ASD such as NVLD, social communication disorder, ADHD/a.d.d, or other transdiagnostic information which is linked to some conditions such as transdiagnostic info for an auditory processing problem, poor self-regulation, memory problems, insomnia, sensory integration disorder, or slow processing speed.
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Name	Anonymous
Demographic	Autistic individual
Response	With the development of new technologies and advancements in medical science there surely should have treatments and help for individuals with autism but the truth is there is more money made in keeping people autistic than getting them out.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Please fund more studies on autistic women/girls and nonbinary folks with co-occurring conditions. We're underrepresented in the reearch.
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Name	Anonymous
Demographic	Autistic individual
Response	I think there needs to be a lot of research to address how co-occurring conditions affect autistic people specifically. It's already really hard to be an autistic adult when there's little to no support for autistic adults. Add on other conditions that can interact with and be triggered by autism, and functioning as an adult (holding down a job, staying on top of chores and errands, paying bills) becomes incredibly difficult. It can lead to financial troubles and further mental health struggles or, in an attempt to avoid that, us having to overextend ourselves which can put us into autistic burnout.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	I truly don’t understand why the following article from years ago has still not become more mainstream. Future Research should focus on these findings. https://www.sciencedirect.com/science/article/pii/S0361923023000771
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Better pharmaceutical research including MMJ.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research into effects of change of routine on the developing mind of autistic youngsters as in the case of the pandemic could be helpful, if there were to be another one. We all know that school attendance has plumetted since the pandemic and for my child that expectation to go back to school after such a long break in education was never going to happen, due to their autism.
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
Response	Clearer understanding of the line between ADHD and ASD and how treatment of and recommended best practices in teaching and parenting and treating children with both ADHD and ASD would differ from those with just one or the other conditions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	anorexia nervosa and other eating disorders - the treatment models are a horrible match for most autistic individuals and exacerbate anxiety and other traits, difficulties
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	This is asking the wrong question. You should be asking, how can we change the way we do research to improve outcomes for autistics. The answer is to stop framing autistic experiences as deficits to be fixed, and instead focus on changing society (including healthcare provision (including behavioral/mental healthcare), therapeutic interventions, the design of spaces, ableism in society), and to include autistics in research that affects us (by including autistic researchers, letting autistics be PI on autistic research topics, focusing on the perspectives and experiences of autistic people rather than centering the voices of our parents and caregivers, and letting us describe ourselves the way we choose to (autistic person, not person with autism). Examine our experiences through a lens of intersectionality: autistics are also racialized, we're 6x more likely to be gender-expansive than neurotypicals, we're more likely to be romantically and sexually diverse, we're more likely to be socioeconomically disadvantaged. Reframe the way that research sees autism, not as deficits or inconveniences for neurotypicals, but as differences to be encourages, celebrated, accepted and accounted for by society.
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Name	Anonymous
Demographic	Autistic individual
Response	I'd love to know if CRPS happens more frequently for autistic people than the general public or perhaps autoimmune conditions in general. I'd put more effort into researching the different ways autism shows up across genders. I'd research all the reasons autistic people struggle in the workplace and take steps to correct it. You are wasting your most precious resource. No one wants a company to do as well as someone who is autistic. We become experts at whatever we do. It just generally requires those around us to recognize that we aren't threatening their position but asking questions because we actually plan on doing what we've been told to do and thus, have no other option than speaking up.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Research WITH autistic people is a must - not just ABOUT them - and publications must be accessible and understandable by the general public
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Name	Anonymous
Demographic	Autistic individual
Response	A good first step would be research on profiles of autism. The only one I'm aware of is the pathological demand avoidance profile and there isn't much solid medical information on it. Some people may be misdiagnosed as having a co-occuring condition when they may be dealing with a specific type of autism they're unaware of. In general more studies on co-occuring conditions, why they are common, and how to help autistic people manage them would be beneficial
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Need evidence-based research for sensory challenges.
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Name	Anonymous
Demographic	Autistic individual
Response	I think it would be helpful to test people with adhd for autism and people with autism for adhd too. I also think if you get an autism diagnosis, you should get like a referral to be tested with some of the common health problems. And maybe the CO occurance of personality disorders too. It would really really be helpful if more women with autism could be included in the research because we often get missed.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Genetics testing should be available at no cost to everyone. But WHY are you asking this particular question and what are your plans for this feedback you receive? Autism does not need cures. We need acceptance no more services for adults. If the research will definitively prove beyond all doubt that autism is genetic or epi genetic in utero so we can stop the vaccines causing autism myth once and for all, great. Rubella babies have a high incident rate of autism. But antivaxxers are out here killing everyone by bringing diseases back. So figure that out.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Explore effect of diet on autism, explore effect of vaccine on autism, explore effects of environmental toxins on autism.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research on subjects who went through formalized school and conventional (such as ABA) therapies vs. subjects who were home schooled/unschooled or in less formal settings such as Montessori, and/or less conventional and more permissive therapeutic settings, and the long term outcomes on their comorbidities.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Not all parents/ providers can tell which issue is the driving the behavior so they cannot determine the cause or kick off of the antecedent.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The overlaps of autism, ADHD, and OCD still seem under-studied and the effects of various stimulants and anti-anxiety medications on different subgroups with different intersections of these 3 diagnoses would be very helpful.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Better diagnostic validity.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Development of more non- addictive meds. Making educators and law inforcement more aware of ways to work with autistic individuals.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Research needs to be conducted BY AUTISTIC REAEARCHERS
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Name	Anonymous
Demographic	Autistic individual
Response	Hypermobility, causing sharp pain in different areas, is a common co-occurring condition with autism, challenging to detect through standard physiological tests unless physicians are particularly attentive. The unsettling aspect is that many autistic individuals receive generalized anxiety disorder (GAD) diagnoses. Reflecting on my mother's GAD diagnosis and past depression, I sometimes ponder the possibility of her being autistic. While I'm not a professional, the question of various scenarios often crosses my mind, acknowledging the importance of not imposing personal theories onto her.Children with autism in socially disadvantaged households require thorough assessment to ensure their unique needs are properly addressed. It's crucial to consider their environment and circumstances to provide effective support and intervention. Exploring additional research on the connection between hypermobility and autism, as well as the prevalence of GAD in autistic individuals, would be valuable for a more comprehensive understanding of these aspects.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	We should be looking squarely at the higher levels of sexual abuse autistic children endure, and we should be acknowledging that documented difference in on-boarding a person for supports, instead of using it to deny access to life changing help. We should be doing elder outreach to find autistic elders who are currently falling through the cracks and living in our cars. Just because we weren't diagnosed as a child doesn't mean that we haven't had lifelong struggles. When autistic people are living in poverty, it is all the proof you need that we were left to fend on our own with significant neurological differences that we didn't understand and couldn't cope with.
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Name	Anonymous
Demographic	Autistic individual
Response	Women, gender non conforming austistics, impacts of going undiagnosed, how others view autism
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	It’s time to start listening to autistic people and really follow their lead. So acknowledge the criticism towards ABA, the hyperfocus on the childhood years at the expense of the lifespan, etc
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Assessment of learning disabilities and accommodations during the assessments to accurately tease out what is causing the specific challenge such as anxiety, sensory input, learning disability, brain functions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	How to update current health professionals on what Autistic people are actually like. The past research has been done without Autistic people and is still being used to identify Autistic people, including using child evaluations to diagnose adults. This is harmful. There are many Autistic people entering the field and they need to be the focus of the research, because having an internal understanding of Autism is much more accurate than looking from the outside in. There are organizations like All Brains Belong in Vermont that are working to give integrated appropriate care for Autistic people, and it is a much more integrated and supportive way of helping Autistic people and identifying co-occurring conditions and how to support them. They have a program called "All the Things" that identifies so many co-occurring conditions and we need more of that type of knowledge and understanding being researched and disseminated to medical professionals.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Please research tics and Tourette Syndrome/other tic disorders
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Name	Anonymous
Demographic	Other
Response	All health aspects need to be reconsidered with spectrum influence in mind. Without consideration for how I'm 'wired', I may not be receiving the correct diagnosis or treatment. Examples: 1) If my system is prone to vit d deficiency, don't just put me on high daily doses. Instead, understand where in the process there are issues. 2. Most behavior modification treatments aren't possible due to overwhelm and need to be prioritized, etc. 3. Understand every patient's capability of reading their own body's feedback. Without clarity at this level, assessment and treatment are mis-informed.
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Name	Anonymous
Demographic	Autistic individual
Response	How do people experience autism and adhd together (as opposed to just autism or just adhd), how can society move to be more accepting of AAC, how can demand avoidant people use strategies to preserve/increase autonomy to reduce nervous system activation, what extra challenges do queer autistic people have to face in society, how can public places be more sensory friendly
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Name	Anonymous
Demographic	Autistic individual
Response	Ask autistic people about their experience. Ask questions. Ask and really listen. Offer kindness. Ask yourself how can you sit with your needs and recognise what is it that makes you feel that the needs and worlds of autistic people is somehow objective. Recognise that autistic experiences in a lot of ways are the same as yours, that it just looks and functions differently, and that’s what makes it so interesting and important. That’s what makes accomodating people and families with autistic experiences so wonderful.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The common co-occurring conditions for adult women: ADHD, anxiety, depression, hypermobility, POTS or other dysautonomia, endometriosis or other reproductive issues, chronic pain, GI issues, autoimmune disorders.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I’d love to see more research into inattentive ADHD in general, and as a co-occurring disorder; it’s much more difficult to treat with medication (most meds are more for hyperactivity) and common ADHD strategies, but makes success in school and life very difficult!
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Name	Anonymous
Demographic	Autistic individual
Response	Treatment for co-occurring conditions that is appropriate for Autistic culture and ways of living
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	Many autistic people happen to also identify as trans. As a trans autistic person myself who has conducted qualitative research to better understand how queer, trans autistic folks create and define their identities, I want to be clear that I believe that autistic and trans are two identities that a person can have, but are not co-occurring medical conditions. With that being said, there are many societally biases against both trans and autistic people, and we can see that in the legislation being passed preventing trans youth from accessing gender affirming care. Some states, like Georgia, even want to prevent trans youth from access gender affirming care because of the fact that there are trans autistic people. I believe that there should be more services and policies in place to protect trans autistic youth and allow them to receive the gender affirming care that they deserve.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Do whatever research you want, but please just help. We need more services that are covered by insurance. Please help.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Medications for ADHD and anxiety Effective, widely available behavioral interventions for ADHD Effective parenting education to manage ADHD, anxiety and autism and effective implementation strategies to teach parents (and caregivers/teachers) Research on visual spatial disorders. This is a common co-occuring condition and the evidence based for vision therapy is promising but weak. Ways to diagnose this at an earlier age, efficacious interventions, and effective implementation. Once we understood this as a part of our daughters autism puzzle it helped to explain a lot of delays but we learned about it late, diagnosis and treatment is very expensive and the treatment evidence based is weak. But it can change a child's life and make other interventions possible if this can be helped in some cases
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Reach out to individuals who live these experiences and listen to their perspectives. Ask them what they see as a gap in services/understanding of autism and co-occurring differences. Also, do more research on implementation of supports at various levels, especially the public schools.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	We need an effective treatment for cognition (intellectual disability). The additional research required is (1) understanding how the brain represents and processes information in a logical, goal-directed way (eg problem solving / reasoning). (2) Treatments need to be developed to improve the information processing systems underlying cognition. There is a lot of emphasis on treating anxiety, depression, and other non-cognitive aspects. Those are important, but there is an absolute paucity of treatments that could address intellectual disability itself. NIMH has a few relevant programs, which could be leveraged much, much more to develop novel treatments.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	We honestly need more research on all fronts. Actual funded research, not just a million people telling their experiences
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Name	Anonymous
Demographic	Autistic individual
Response	I think research into treatable gastrointestinal conditions and sensitivities could be helpful. The research I see is often on the connection autism has with the gut biome, but I don’t find it helpful because I don’t know how I could use it to improve my digestive issues.
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Name	Anonymous
Demographic	Autistic individual
Response	There needs to be much more research into Ehlers Danlos system, a the EDS "cluster" in general: EDS, POTS, and MCAS. It would greatly benefit autistic people, particularly autistic women who are disproportionately affected by EDS, if the diagnostic process were faster and more available, and if medical doctors were actually educated about the process and willing to initiate it. It would also be extremely beneficial to understand what gene causes hEDS, and better treatments for the issues that faulty connective tissue causes. It would be fantastic if the treatments for the various EDS issues could actually be integrated into the various medical specialties, so that someone with EDS seeing a gastroenterologist for EDS-related issues would be able to get EDS-specific care from an in-network specialist, rather than resorting to their own research and out-of-network EDS specialists. Specifically for me, more research into how EDS affects TMJ and craniocervical instability, how to better diagnose and treat these problems, would be fantastic.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Alcohol and substance use
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Name	Anonymous
Demographic	Other
Response	How co occurring conditions affect people who have autism in multiple ways.
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Name	Anonymous
Demographic	Autistic individual
Response	Just uphold the not about us without us motto and understand that we’re all different and that while autism itself isn’t a mental illness, many of us autistics are prone to *getting* mental illnesses and that to get respect especially from us you have to give respect.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research of how we can benefit children at an early age with communication
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	fMRI, EEG, and other imaging data to capture structural variations in the brain among those with different neurotypes and conditions
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Name	Anonymous
Demographic	Representative of advocacy organization
Response	commuication with families, and individuals with autism
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Visit families and know their experiences impacted by autistic people in the family
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Early diagnosis and treatment
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Resources. Researching the brains response to different stimuli to help better understand how the multiple diagnoses play a part and which ones are the "cause" of specific challenges.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Include diversity of location, culture, race, ethnicity.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	There needs to be a much deeper understanding of how allostatic load contributes to autistic co-occurring physical health issues and how this frequently causes on-going or extremes of autistic mental health issues. There needs to be a MUCH greater effort to integrate neurodivergent differences and eliminate neuronormative bias. There needs to be meaningful and prohibitive outcomes for those who insist and persist in discriminations against the autistic, and there needs to be accelerates education in all industry domains, but particularly the medical and mental health ones to assist autistic people in protecting their agency, autonomy, and lived experience authority (these being the first things that come under attack, which, frankly, should be viewed as human rights violations).
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Research may be needed about how autism relates to different kinds of developmental disabilities. What does autism "look" like for each co-occurring developmental disability? Research may be needed about whether early autism diagnosis/intervention helps prevent additional mental health and physical health conditions down the road.
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Name	Anonymous
Demographic	Autistic individual
Response	Longitudinal study on allostatic load and its contributions to depression, diabetes (type 2), high blood pressure, afib, and auto immune disorders.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Self advocacy
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	We need help preventing aggression, psychiatric medications, and behavioral/sensory treatments. More emphasis must be placed on the needs of adults who often lack access to appropriate care and whose dangerous behaviors cause enormous burdens to families and care providers.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	We need all kinds of research across disciplines: 1. Better diagnosis 2. Better treatment
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Additional research is needed in helping to identify autism in females. Our daughter was diagnosed at 17 because professionals were always looking for “other” things. At this age it’s very difficult to find services for her.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	recognizing, treating, and interacting with pathological demand avoidance.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More funding needs to be placed on those with the most severe autism needs. Those who cannot take care of themselves and will need lifelong care. How are we as parents supposed to ever be at peace knowing there may not be anything or anyone in place to take care of our children when we are gone.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	more research on the presentation of MH conditions for people with ASD is necessary, we know the symptoms present differently, but this needs further investigation that can lead to quality training for psychiatrists and NP and therapists. In addition, the same can be said for medical providers. research to better understand how symptoms may present, since the individual may not be able to clearly communicate their pain or symptoms, leading to effective training for medical providers.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	More research into hyper mobility
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research in genetics and treatment options for co-occuring conditions. Especially in more natural, Integrative approaches.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Personal conversations with the austic community
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Further research could delve into identifying specific genetic and neurobiological mechanisms that contribute to the co-occurrence of conditions in autism. Understanding how these factors intersect may guide the development of targeted treatments. Additionally, exploring the role of early intervention and assessing the effectiveness of various therapeutic approaches for individuals with multiple conditions could enhance overall care. Investigating the influence of environmental factors, such as socio-economic factors or access to support services, is crucial to creating comprehensive strategies for managing co-occurring conditions in autistic individuals.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Other
Response	Pediatric and Adult Docs need a new screening protocol that includes PANS/PANDAS, encephalitis, LYME and environmental screening for toxins such as mold. If these are found early it is better, but policy can push these screeners to begin now. The silos in medical are and mental health care in all candor are a joke. It needs to be a top down mandated structure. If these diagnoses are found and medical/MH care treatment are implemented, you could decrease the use of 911, psychiatric stays, ER us, admissions and more. Just get it right medically - you would be surprised. Also, psychotropic medications are used like candy - there is NO oversight and no clinical direction for people with ASD taking all these meds. Trials need to include neurodiverse who can report AND non-verbal non-speaking SEVERELY impacted people in these trials. Most families will tell you MEDS DO NOT WORK. Under this view, the question becomes... then what? Back to policy that provides true expertise and higher pay for those who care for severely impacted ASD people in day programming and residential settings.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	I would love to see or hear research being done on how peoples energy and auras can affect our interactions with the autistic population. From my 10+ years of working with them, I feel like this population can pick up on peoples energy and this allows them to select who to avoid and who to open up to.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	We cannot stop research to support autistic individuals. While some are able to live without high support needs and can even have relationships and work, many are underemployed, restricted in their rights and autonomy, and are at severe risk for being taken advantage of in their lives (e.g., sexual abuse, physical abuse, theft).
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I don’t feel that autistic individuals are the only people that need to be researched I think that it is a matter of perception. When you grow up and your told that something is different about you and your not like most children your age. It hurts. Then you grow up with this hurt of being different and not really fitting in with the other children which leads to you not having much of a social life. These things have already been researched. Normal people that don’t suffer from disabilities or disorders need to be researched just as much as people that have autism or schizophrenia. Once your diagnosis with a disability the decision is made for you. You don’t get to decide whether or not you want to be labeled. Not having a condition or maybe never being recognized for having a condition is really not fair. Many people never really are researched and get over looked for their condition because the symptoms are different.
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Name	Anonymous
Demographic	Researcher
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	ASD needs to be better understood by more people. A diagnosis was requested of his psychiatrist who did a test and declared, " I see no reason to change his diagnosis." That wasn't the question. I wanted ASD as an additional diagnosis, not an exclusive one. He needed a developmentally delayed disorder diagnosis to qualify for dental coverage. Almost all meds for SMI cause dry mouth, which is hard on the teeth, yet they have no dental coverage other than to pull their teeth.. Our other son was DD (from infection, not genetic) and he had full coverage.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I think there should be more research for those with severe autism and intellectual disabilities. I believe 30% have intellectual disabilities. It would be helpful if there were medical intervention for children that have severe behaviors that come with severe autism. Also, I am very scared about what will happen to my son when I am no longer able to care for him. There are not many or places long-term to care for severe autistic adults.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher
Response	More consider of primary, secondary and tertiary care, rather than focusing mostly on adapting interventions (which tend to be tertiary).
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The effectiveness of medications AND non-medication treatments for co-occurring symptoms specifically in people with autism. (Electromagnetic fields, vitamin and mineral supplementation, social skills groups, dietary changes, types of individual therapies, sensory diets, etc) Screening tools for co-morbid conditions specifically tailored for patients with autism. Effects of electronics on relational function, emotional well being, communication, empathy, academic performance specifically in autism cw typical peers. Best practice programs for evaluation and management of teens with autism to transition teens to adults and into the workforce-to address how to manage their developmental delays and disabilities.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Do not fund more ABA single case study research. If they get funded it needs to be a large randomized control study that a non ABA IRB research institute manages. Remove the bias.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I wish there was more research into the therapies and their effectiveness long-term on these co-occurring conditions. Autism is a life long disorder, yet there doesn't seem to be long-term research on these therapies and their effectiveness that are done in childhood. Also, I would like to see more research done on kids that take ADHD medication vs those that don't and long term what their outcome looks like.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Go into special services schools in NJ and observe and help rectify the educational economic social communication and medical gaps of this population
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Understanding the differences in the ways Autism presents in people based on gendered social expectations. People socialized as females have been entirely overlooked in terms of autism supports, because we were trained to be well behaved. The DSM criteria for autism is based solely on criteria for white males.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	to engage in AND proliferate results from research on how autism affects co-morbidities and how regular providers and agency caseworkers can indeed accommodate autism without much specialized training. More research is needed about how health care providers and social agencies can accommodate people with autism in simple, direct, tangible ways.
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Name	Anonymous
Demographic	Autistic individual
Response	More research is needed on finding more effective resources for high support needs autistic individuals and their families so that the ASD individuals can potentially live independently or not need as much support as adults. Research is needed to help address the comorbidities with ASD and other disorders like ADHD, bipolar, borderline personality disorder, OCD, anxiety, and depression and research devoted to improving mental health methods that are more neurodivergent-affirming practices. More research needs to be devoted to the ways intersectionality plays a huge role in POC autistic people and how it contributes to many of them not being diagnosed or being late diagnosed adults (https://pubmed.ncbi.nlm.nih.gov/36777375/).
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	We need to listen to children, parents and self advocates and understand their needs and priorities. Observational studies identify issues but intervention study is needed to find solutions. Curing ASD should not be a goal. Improving function and well being should be the goal.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Other
Response	The World Health Organization has declared air pollution as a top five risk factor for cardiovascular, respiratory and neurodegenerative disorders. The CDC has an indoor air quality policy. Scented or fragranced products are prohibited at all times in all interior spaces owned, rented or leased by the CDC. CDC Indoor Environmental Quality Policy.pdf (wsimg.com) There is an international prevalence of chemical sensitivity. Dr. Anne Steinemann has done extensive research on this topic. Please see her website: Home (drsteinemann.com) FAQs (drsteinemann.com) It is time for all hospitals, health clinics, doctors and dental offices in the U.S. to adopt and enforce the CDC's indoor air quality policy.
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Name	Anonymous
Demographic	Autistic individual
Response	Research on undiagnosed adults. Research on autism in females** Research on the effects lack of accessibility Research on burnout and how to properly cope
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Name	Anonymous
Demographic	Autistic individual
Response	More research on how autism & co-occurring conditions show up in BIPOC women. Most BIPOC women don’t ever get diagnosed with Autism as co-occurring. Only one or the other.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Ask autistic people. Make it truly accessible and not only asking adults and not only speaking and reading people. Amyloids GS224 Connective tissue disorder Mitochondrial disorders Long covid
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	In general I would like to see more research done that involves girls and women. Autism can look different in girls and women than it does in boys and men, and I think this leads to fewer girls/women being diagnosed and therefore supported. Looking back at my childhood, much of what defines my sons' autism overlaps with my own experience. Hyperlexia, toe walking, sensory hypersensitivity, rigid and literal thinking, a sense of observing a group rather than being part of it, enjoying alone time, not naturally "getting" social norms but being able to mask… this is all me as well. I think I would have had less anxiety and depression as an adult if I had understood that I am most likely autistic and indeed different than the majority of folks on that front.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research is needed on how to implement better societal supports such as parental education programs for autistic children, school based advocates for children and parents alike, research on what accommodations make sense for folks with ASD and overall more research on how ASD affects overall health considering there are a plethora of linked conditions. To clarify, we need research on how SBHCs affect autistic children's health in addition to how non specialized practitioners treat autistic patients compared to practitioners who have a background in autism. We need to know exactly how much the lack of training is affecting/driving health disparities. There needs to be more research on adult autism (society only supports autistic children as if turning 18 magically fixes us), and how we can better support adult diagnosis to help folks live healthier, raise their potentially autistic kids better, and find preventative health sooner. That is, we need to know WHICH co-occuring conditions are linked to autism so we can hassle our PCPs to get started on the process. We need more research on how autistic folks experience health inequities so the powers that be can break down those barriers. We need more community based research so autistic folks can share their lived experiences of managing co-occurring conditions. We need more research on how to better integrate community support systems for autistic folks in rural areas.
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Name	Anonymous
Demographic	Autistic individual
Response	More research into possible metabolic differences, especially as they might relate to the metabolism of medications. More research into correcting postural issues that lead to chronic pain. Beyond just research into autistic people themselves, there needs to be research into the scale of gaps in knowledge in medical settings. Do doctors know the different ways autism can present in patients? Do they know how this can change over time, as people grow up and learn strategies for coping with, or even hiding their autism, often even without knowing they're autistic? If a doctor knows a patient is autistic, are they even aware of any co-occurring conditions their patient might need help with in the first place? Can doctors make recommendations that work for autistic people, like giving nutritional advice that can accommodate food sensitivities? Do doctors know that autistic people are capable of making decisions for themselves, including medical decisions? It won't help autistic people for there to be articles published about the gastrointestinal issues, metabolic issues, or postural issues, etc, if there isn't any work done to address whether that information actually gets disseminated to the medical providers autistic people actually have access to.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The positive effects of polyvagal and somatic therapies, along with EMDR. Being able to notice sensory overwhelm as it is happening and being able to calm down overstimulation/fight, flight, freeze, and faun for oneself in your body before burnout. EMDR does not need talking and is an incredible way to physical feelings in the body, emotions, as well as trauma.
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Name	Anonymous
Demographic	Autistic individual
Response	Research on the gut biomes of autistic people Research on the neurology of sensory sensitivities
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research the training that providers receive to find out if more is needed.
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Name	Anonymous
Demographic	Autistic individual
Response	More research into nonverbal and semi verbal behaviors and causes for it
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I think we need to study the physical symptoms or occurring that autistic people deal with and take them seriously. Listen to us when we say we think we have POTS and we think it relates to our autism. Also listen to Austitic adults.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More research needed into how their living environment (home, work, community) affects their lives and behavior
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Qualitative studies that highlights lived experiences of parents and individuals with autism and co-occurring disabilities to share. Investigation of IEP accommodations ( special education, IDEA) that are frequently used to inform special education teachers and its correlation to improvement in any school related activities. Longitudinal studies that tracks accommodations and related services to investigate the magnitude of the effect on academic performance, personal satisfaction level at school and reduction of challenging behaviors from teachers's perspectives/ parents and students themselves
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research in which the autistic community can express their needs and how professionals and neurotypicals can better satisfy those needs. Also, training and education to everyone: doctors, therapists, businesses, educators, etc. about ASD and co-occurring conditions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Perhaps we need to be researching integrated models of care specifically designed for individuals with autism. There are so many potential co-morbidities that can impact quality of life, independent living, and health. A multidisciplinary approach may be needed. I imagine a center where healthcare, different therapies, navigation services, and mental health services are all available. We probably need more research into how to meet the needs of autistic students with co-occurring conditions in the schools. For co-occurring psychiatric conditions, one of the most challenging co-morbidities, researching how the START model at the University of Vermont could be modified and expanded to meet the needs of children with autism could make a difference. For adults, research into how to help them avoid mental health crises or how to respond more effectively when these occur would be beneficial as well.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Would love to see someone looking into the interaction in the brain between the co-occurring conditions because what I often see is an approach meant to help with one condition....Adderall for ADD, for example...exacerbates another condition...anxiety, for example. If there were a Venn diagram(s) mapping out the brain, perhaps the therapies in the center of said diagram would yield a bigger benefit.
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Name	Anonymous
Demographic	Autistic individual
Response	Gut health is definitely something to look into. But also look into how popular therapies like ABA affect the mental health of autistic people, because I’ve heard some very negative stories.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The most beneficial research would be toward helping patients quickly identify any co-occurring conditions they may have quickly so that quality of life may be improved. Comprehensive screening test or a genetic test panel might be two ways of accomplishing this.
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Name	Anonymous
Demographic	Autistic individual
Response	Most research focuses on the needs of nonverbal autists, as communicated by their caretakers. Autistics who have the ability to understand and voice the accomodations they need should be more involved in the research and should be taken more seriously, as many of our needs align with nonverbal autists.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	How changing the overall environment in society can positively affect autism and society as a whole. Like lower lighting or quieter or no music in stores and restaurants.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The severity of symptoms and effectiveness of treatment when comparing autistic people to non autistic people. I cannot find much information on this. Autistic people and non autistic people experience things differently because of the way the brain processes everything. If we were to find any differences in how autistic people experience co-occurring conditions compared to non autistic people, we may be able to better treat co-occurring conditions in autistic individuals.
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Name	Anonymous
Demographic	Autistic individual
Response	The link between ADHD and ASD. Why 9/10 of autistic women have experienced sexual assault and ways to effectively teach the public about consent to prevent this. How to make society more inclusive so that PTSD and C-PTSD are not expected comorbidities. Ways to actually support autistics and NOT ABA. Why ABA is even legal(it should not be). Effective protections for ASD adults under ADA to help them keep their jobs and have support. Better methods of teaching doctors how to take the disabled more seriously as well as women and anyone who is not a neurotypical white man. How to help autistics get better sleep. Methods for teaching autistics ways to do everyday things like cleaning and house chores for themselves in a way that is doable and not overwhelming. Maybe more accommodative decides for Autistics that help them get these things done more easily without shame, or guilt, that are low executive functioning friendly.
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Name	Anonymous
Demographic	Autistic individual
Response	I'd say figuring out the rates of co-morbid conditions with: Level 3s autistics, Level 2s autistics, and Level 1s autistics. Is one co-morbid issue more common with a particular level? Does the person's level change how the co-morbid issue affects them compared to someone at a different level but same co-morbid issues? Does sex and/or gender change these as well? I think these questions need to be researched further.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Common coexisting issues and how they mirror autism. Listening to the child’s advocate (parent or 3rd party)
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Name	Anonymous
Demographic	Autistic individual
Response	There needs to be more research all around, concerning mental health, autism, and co-occuring disorders. The DSM as it is now is grossly outdated, extraordinarily locked into a nonexistent gender binary. Our knowledge of how the human brain works is still extremely limited. We may know the names of some neurotransmitters and vaguely what they do, but we have no real idea of how the brain functions as a whole, and how it interacts both with the individual and the external societal context it exists in. Many existing diagnoses are immensely oversimplified, often overlapping with others in many significant ways, which to me makes the labelling of people using these disorders pure guesswork, and incredibly dangerous as any sort of foundation for legislature. We know nothing, and yet we find ourselves trying to put people in these boxes and subsequently make laws based on unproven and outdated science largely funded by cis, white, heteronormative financial sponsors. 50 years ago, being gay was considered a mental illness. What will change 50 years from now?
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Research is needed to identify appropriate interventions and treatment and increase education of providers
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	FUND RESEARCH for: Postural Orthostatic Tachycardia Syndrome (POTS) Ehlers-Danlos Syndrome (EDS) Small Fiber Neuropathy (SFN) Mast Cell Activation Syndrome (MCAS) There are NO TREATMENTS for ANY OF THESE. Find them.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Ask the Autistic person themselves about their struggles rather than their loved ones or caretakers. Every autistic person has different needs and accommodations that need to be addressed by researchers. Research on physical and mental health conditions faced by Autistic people needs to be expanded upon. Research on marginalized Autistic people such as women, POC, and LGBTQ+ needs to be expanded upon as well.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Research how to get social security disability or some other government funding to help autistic adults survive and thrive. It is a joke that there aren't any support programs in place to help us.
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Name	Anonymous
Demographic	Autistic individual
Response	Research into how autism affects women compared to men, how autism presents based on age, and how autism can differ because of race. Co-occuring conditions need research based in finding out if the cause is genetic or environmental.
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Name	Anonymous
Demographic	Autistic individual
Response	There needs to be more research on sensory issues and how serious they are. It’s not autistic people being picky, it’s a real and serious issue that we wish we didn’t have. There also needs to be more research on autism in adults and AFAB people in general
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Name	Anonymous
Demographic	Autistic individual
Response	Any research not done by eugenicist groups like Autism Speaks.
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Name	Anonymous
Demographic	Autistic individual
Response	catecholamine and glutamate studies. Delineating differences between autism and cptsd, BPD, and other disorders that have comorbidities that are often used in misdiagnosis of autistic individuals.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	More research with autism in women
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Other
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	more research done with autistic females to help diagnose earlier
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	After them being placed in the school system with the programs available to them, there should be more programs available to them when they are done in the school system. My son is 38 yrs old and I still have problems with Dental, communication, and other programs that only allow up to 18. They should be more research as they age.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Self-injurious behaviors Combativeness/aggression Constant vocalization
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Every patient diagnosed with mental illness, autism, intellectual issues needs to be screened for autism spectrum at least to rule it out like the do depression.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	How to form outreach for people who can’t advocate for themselves.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Therapy, medical care, school restructuring, disability representation and education on conditions and how they can be spotted in schools to notify students families on how to adapt to their child's needs and maintaining support over time
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Name	Anonymous
Demographic	Autistic individual
Response	Idk what research is out there already. But maybe look into auditory processing disorder since not a lot of people know about it. Fatigue and severe anxiety could be researched too.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Studies seek out participants from minority groups who have been excluded from ASD research and dx, but they require a formal diagnosis. It makes sense that they would want to ensure participants have the condition, but the disparities in accessing formal diagnoses lead to fewer qualifying participants which harms both the study and the autistic community. There also needs to be research on non-behavioral ASD supports due to the traumatic nature of ABA. It is unacceptable to justify the use of ABA with a lack of evidence-backed alternatives while failing to put resources into exploring trauma-informed alternatives. Research also needs to explore the psychological and neurological impacts of ABA rather than only the behavioral impacts since ASD is a neurodevelopmental condition, not a behavioral condition. I think it would be helpful to study the co-morbidity between ASD and PTSD. Again, this would be difficult to do if a formal dx is required for a participant to qualify as having both disorders. It could be helpful to explore the co-morbidity of participants who meet the dx criteria for both rather than simply relying on a formal dx. It's also important to explore the co-morbidity of POTS, MCAS, and EDS with ASD and ADHD would be beneficial since there are many anecdotal reports of neurodivergent people experiencing either one or a combination of these disorders.
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Name	Anonymous
Demographic	Autistic individual
Response	The people that can mask to the point that they can function and get misdiagnosed with other disorders need case studies. I am 26 and just now got diagnosed because as a child my parents were told that my iq was too high for me to actually be autistic
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Name	Anonymous
Demographic	Autistic individual
Response	How to fix sensory sensitivity (e.g. noise, light, food). The world is a very loud place and due to my noise sensitivity, I am not welcome to many places in it. After that, researching how people with abnormal, autistic brains can properly sleep.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I feel like we need to focus on the self diagnosis and how it IS a valid diagnostic tool. Autistic individuals are so scared of being perceived as an outsider that I would avoid all in person interactions. I would love to see more online and accessible care for all, not just those that have insurance coverage or money.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	As mentioned before, the biggest thing I want to see additional research on is puberty and menopause and the impacts of those hormonal changes in females. I think this research could help shed light on the impacts I think this greatly has on this population. I think studying what is going on could also lead to treatments that will in turn allow these females to continue to have a quality of life, contribute to society still (socially and economically) and be able to continue day to day living tasks better without burdening resources.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Autism evalutaions shoud be standard and happen regularly in elementary schools the same way they check for lice, or eye sight, or scoliosis in public schools, they should inquire for autism and other types of nuerodivergence like ADHD in little girls specifically becuase the girls get left behind, I did.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research into what causes these conditions and how to alleviate them, especially the mental health and obsessive challenges.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I think listening more to the individuals who can articulate these things for themselves and/or parents and caregivers who are doing their best to work through these challenges as you have done with this questionnaire. Yes, the doctors, Sped teachers, specialists, paraeducators went to school and studied all about autism and other disorders but they have a tendency to ignore and dismiss the very real concerns and suggestions of parents and caregivers. STOP THAT
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	1) The connection and prevalence of Gender identity and co-occurring conditions. 2) The connection between environment/environmental factors and co-occurring conditions. 3) Best practices for providers to communicate with ASD individuals with co-occurring conditions. 4) How to make communities and society more understanding of how co-occurring conditions impact autistic individuals.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	specialised multiprofesional teeams working with patioents and families,
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Name	Anonymous
Demographic	Autistic individual
Response	Expand research into bipoc and indigenous, women trans and nonbinary etc. Most research has been solely on affluent white boys/men
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I think it is important to research ways to best support individuals with autism and their caretakers in finding ways to manage these co-occurring conditions. Accessing therapies and mental health services is not easy and while work is needed to improve access, perhaps researchers can find other ways to help in the meantime. Also, finding ways to increase job opportunities and explaining these conditions to employers. I often wonder if my daughter will be able to maintain a job or will she be let go because of some of these co-occurring conditions.
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Name	Anonymous
Demographic	Autistic individual
Response	1. Identifying co-occurring conditions and why they co-occur, so they might be treated. 2. Identifying how the co-occurring conditions affect autistic people so environments can be adapted to better serve autistic people while still being useful to typically-developing people.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The need for the person who has autism but does not fall in the low or high spectrum. Would benefit from being with typical kids but need the help to navigate yet would not benefit from the lower functioning people. It's tough to find programs that has a mixture of this kind.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	development of tools to ensure diagnostic tools are not weighted towards any one group [consideration of impact of gender, race, poverty, trauma, etc.] effective tools for primary care providers working with individuals on the spectrum when completing annual physical... question and response format that is supported by best practice
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Compare and contrast Medicaid utilization of both mental health and developmental disability services for individuals with autism and a co-occurring mental health condition. Additional research on prevalence of co-occurring mental and physical health conditions in autistic adults.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	My concern is the DIAGNOSIS OF AUTISM when it is absent. Many people are worried they are autistic and are insisting on evaluation. Many evaluations are faulty unfortunately.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Best supportive living situation for people with complex autism and co-occurring conditions to keep them safe but still offer a connected, meaningful life.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Insomnia research, GI research, connective tissue disorders research, ways to achieve nutritional balance on a limited diet
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	PDA is the significant neuro-psych behavior that feels generally unknown in the industry in the US. Many clinicians treat it as a behavior issue which only makes it worse when the child masks.
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Name	Anonymous
Demographic	Autistic individual
Response	Much research is needed on the ways Autism presents in all marginalized groups--autism in the Black community and other people of color, autism in women and girls, autism among trans and nonbinary folk, high-masking autism, autism in adults and not just children, and autism as it intersects with other conditions that can mask it like ADHD. More research is also necessary into communication design that is more accessible--things like UI design and graphic design (both digital and physical) as well as increased written communication avenues like through text and email.
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Name	Anonymous
Demographic	Autistic individual
Response	Please check out the PDA Societies website https://www.pdasociety.org.uk They are the leading institution around PDA (pathological demand avoidance or pervasive drive for autonomy) This profile on the autism spectrum needs to be researched extensively because the strategies for autism actually worsen the symptoms of PDA! Only the strategies designed for PDA work with us and they make the difference between night and day. So many lives could be saved (I almost successfully killed myself at age 16) if this profile could be identified and interventions put in place. But it needs a lot of study and more research. Please! The first 20 years of my life with PDA were a nightmare for both me and my mom. I had to go to eight different high schools before I could graduate. We fought daily! I could not 'do' almost anything! BY age 19 I was an alcoholic shooting heroin and homeless. Fortunately things turned around but I am an exception! Thank you.
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Name	Anonymous
Demographic	Autistic individual
Response	The research that I feel is the most needed is how often PTSD/CPTSD occurs in autistic individuals and where that often stems from. Every single autistic person, especially early diagnosed, all have PTSD which can be traced back to early childhood. If left untreated, this can lead to other mental illnesses such as depression and even BPD, which is also caused by childhood trauma. This is unrelated to childhood trauma but how often ADHD occurs alongside autism and how that can impact the autistic individual growing up. This must also be researched for those with ADHD who have late/undiagnosed autism.
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Name	Anonymous
Demographic	Autistic individual
Response	Look at high masking autistic individuals and the trauma and mental health destruction that can result, particularly high achieving, high masking females
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Name	Anonymous
Demographic	Autistic individual; Other
Response	when one comorbid diagnosis occurs others should be considered to fully support the autistic individual. there should be more research on ADHD and autism, what it looks like when they occur together (because autism symptoms can cover up ADHD symptoms and vise versa) and what they look like separate. also more research should be done on autism in AFAB individuals as they are often socialized differently and autism can be overlooked as simply being picky, shy, or "weird"
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Name	Anonymous
Demographic	Autistic individual
Response	More research in adult diagnosed individuals to determine support needs from years of trauma through undiagnosed years
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research is needed to address the intellectual disabilities associated with autism, particularly in individuals with a co-occurring diagnosis of Down Syndrome and autism, who are significantly impacted in all activities of daily living.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Further research into CPTSD and how trauma impacts the brain is needed as a whole even for those who are not autistic, as while a great deal of new information has been learned over the past decades, there is still a great deal we don't understand about trauma's impact on the brain and many health providers have a limited understanding of CPTSD, if they know it exists at all, as many are only aware of PTSD, which shares many similarities, but has distinct differences as well. A further understanding about the social treatment of autistic individuals in our current society would likely shed light on the trauma this treatment can cause and the lasting mental health impacts this can have. Further study into the unique ways certain conditions occur with autism is needed as well, such as how eating disorders and addiction impact autistic individuals at higher rates compared to the neurotypical population. Overall, if further research is done on these co-occurring conditions, it is likely that more individuals may be diagnosed as austistic and given treatment suitable to their needs.
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Name	Anonymous
Demographic	Autistic individual
Response	just...more. a lot more. larger, more diverse sample areas, autistic-led and autistic-focused research. and [profanity redacted] autism speaks and their "cure autism" goal and all of their [profanity redacted] "research". they are a hindrance, they fearmonger and suck up donations from well meaning idiots.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Brain research, vitamin research, body function research, what does the spectrum truly look like. Is autism the main disorder and other disorders are co-occurring but autism is not looked at because the other symptoms are only looked at because of the lack of research and information published on this type of neurodiversity. I believe all children that enter school should be tested for autism at a young age. School research needs to be conducted to change the way we teach our children. We know that brains are different and we should be educating our children and public on this. We cannot create a system where "one size fits all" because that is not the case. We need research looking at the increased rate of homeless, suicide rates and substance use disorders to see if they are tied to individuals masking their autism and using the tools society has given them because there is a lack of understanding of what autism is and how do we treat it. Research associated with overall assessment for autism in men and women, girls and boys, of all persons. Does autism look different in different locations of the world because of their environmental exposures. Research on how autism is developed (nature/nurture/genetic)? Is this a part of our genes? Can it be identified?
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Name	Anonymous
Demographic	Autistic individual
Response	How conditions may effect a Autism Diagnosis. Both mental and physical
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research that focuses on the cultural impact on autism, how different cultures treat people with autism, and how to effectively address each cultural implication in families to help people with autism in that family. Research that addresses sensory issues and GI issues in autistic people to better address the problem rather than a doctor saying, "Just eat more fiber."
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	You need to start researching autism and other neurodivergent ADULTS! and research what community resources and support we need. Research and pass laws on how workplaces can be neurodivergent friendly. I can work, and I enjoy my work, I'm told I'm one of the best employees, BUT, when the work environment is not friendly towards me, I can't do the job I love. Autistic children grow into autistic adults, but us adults are forgotten and tossed aside. Researchers can learn so much from us, but we're never part of the conversation. We're never included in the decisions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Quite a bit, especially in women and girls. Girls are very often diagnosed much later than boys, which results in girls having to mask more and for longer and requires us to find ways to manage it all on our own, taking a major toll on mental and physical health. In both, what are the effects on the central nervous system and the adrenal system, how do those differences contribute to Autistic perception of the world, and in what novel ways can we "turn the volume down" on the world? What's the toll on those who are "gifted" (as schools classify them) and also ND? What can we do to better support them?
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Research for Autism in connection with: eczema, ehlers-danlos syndrome, and ocd need further attention.
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Name	Anonymous
Demographic	Autistic individual
Response	While it is helpful to do medical research to determine the causes of various co-occurring conditions, I would like to see increased research on sustainable and equitable solutions for difficulties autistic people experience. While some of my difficulties could use medical interventions, such as the gastrointestinal issues, others involve things outside of my control, such as how society works in ways that are inherently not intuitive to me.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Independence-based treatments for adults, especially continued occupational therapy
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	It would be useful if folks that had a formal diagnosis and qualified for public disability funds would actually get to describe the experience of their child in a way that could be used by folks like University of Washington Spark project. Also, if I'm being honest, I think we need more information about folks that need the most support needs. A lot of folks who are on the spectrum and do not need many supports are hogging the conversation. There are a lot of mothers huddled in rooms right now, isolated, and doing their best that are bullied by the state, medical authorities, and even vocal disability advocates that don't want to understand how difficult situations can really be out there in the real world. If you've met one person with autism, then you've met *one* person with it. Some folks are really in impossible circumstances. We need to address the practical needs of *those* folks.
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Name	Anonymous
Demographic	Autistic individual
Response	More research on antidiuretic nasal spray More research on adults. Most is done for and with children. More brain imaging Most studies between the effects of early diagnosis vs late diagnosis. More research on emotional disregulation.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Researching life span issues, particularly aging well. Research on unconscious bias of medical professionals.
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Name	Anonymous
Demographic	Autistic individual
Response	Autism in women (including those that are diagnosed late) and particularly women heading into or in menopause. Whole different level of stress and emotional management and it is NOT discussed.
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Name	Anonymous
Demographic	Autistic individual
Response	Research into providing accomodations and facilitate making contributions
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research is needed to address the cause of autism and how to help those with high support needs, those that are nonverbal and those that display aggressive behaviors and those that cannot communicate using alternative communication forms.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research needs to focus on how to support, serve, and intervene (when necessary) folks of ALL ages. Most research I see is focused on early intervention or transitional age/young adults, but there are so many school age children and older adults who are without resources. Additionally, please stop funding research that focuses on finding "causes" or "warning signs" of Autism. Autism is not a disease, it will never go away or stop existing. Frankly, some research I read comes off as trying to bring eugenics back in style. It's extremely depressing and disheartening to see that people like myself and the folks I used to support are viewed this way.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	MCAS POTS EDS
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Name	Anonymous
Demographic	Autistic individual
Response	i don't understand this question
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Cognitive developmental deficits
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research how anxiety and pathological demand avoidance are related and how these interfere with learning, social relationships (making and sustaining), and employment. Figure out how to make these challenges into assets or at least mitigate some of the negatives
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Name	Anonymous
Demographic	Autistic individual
Response	Researchers need to listen to the neurodivergent individuals and their lived experiences. Outward appearance has absolutely nothing to do with the world within. I believe that we're going to find that neurodivergence as a whole is one big spectrum of trait regulation and intensity. Certain things like anxiety and depression are tendencies that vary intensity by the environment the person is in. Researchers need to understand that some of us that made it to adulthood before diagnosis had really hard lives and had to figure out how to blend in to survive. Outward appearance CANNOT be a consideration as to how "functioning" someone is. *trying to make an neurodivergent individual more "normal" against their will is abuse and should be a prosecutable offense*
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Name	Anonymous
Demographic	Autistic individual
Response	Research is needed to give autistic people the accommodations they need to thrive in education, the workplace, and society in general. The public needs to be better educated on what autism is and how it presents. Sorry, this is not a very specific answer, but I strongly feel that we have done a terrible job of trying to understand and accommodate the needs and challenges of those whose brains work differently from the norm.
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Name	Anonymous
Demographic	Autistic individual
Response	I would like to see research on how autistic masking affects mental health, whether masking is correlated with self-reported trauma history via ACE scores or another metric, whether gastrointestinal conditions are linked to masking and/or distress in autistic people, whether sleep difficulties and sensory processing disorder are correlated in severity, and whether education on co-occurring conditions aimed at autistic people is sufficient according to autistic people (understood, effective in teaching self-care, comprehensive enough). I would also like to see more research into how to treat autistic burnout from a mental healthcare perspective, as mental health professionals in my experience are severely under-prepared to handle this issue.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	We need to make a better effort to understand the research that’s already been done. There are still too many “professionals” out there that do not understand Autism and ADHD; They only understand a specific stereotype of either of them and it greatly negatively impacts quality of care. Eg: Why are we gate keeping ADHD meds when we know it’s FAR more likely for them to fall into addiction if they aren’t vs if they ARE medicated? Why are we gate keeping AAC devices on the grounds that it discourages them from using verbal language when that’s not true at all? Why are we still calling everything “anxiety + depression,” prescribing SSRIs without doing any due diligence to make SURE it’s not an underlying neurological difference? Why are Neuropsych evals so difficult to get insurance coverage for?
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Name	Anonymous
Demographic	Autistic individual
Response	There needs to be more research done that involves getting information directly from autistic people, rather than allistic (non-autistic people) who know someone who is autistic. There needs to be more research on how to make the world more accommodating for autistic people and to educate allistics on how to accommodate autistic people, rather than trying to make autistic people less autistic. There needs to be more research on the long-term effects of masking behaviors, as well as the long-term affects of ABA therapy (which is actually child abuse and is currently the main resource/"treatment" for autistic people. We don't need to be cured, we need acceptance, understanding, and accommodation.
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Name	Anonymous
Demographic	Autistic individual
Response	Research should involve asking autistic people themselves what would help them the most.
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Name	Anonymous
Demographic	Autistic individual
Response	Ask us. Talk to us. Help us figure out what support and accommodations look like across the spectrum. Understand that what works for one is not a universal approach. Implement more neurodiverse focused options when it comes to design for public spaces. Ask public service providers to provide better options (I.e. some retailers provide sensory friendly shopping hours/experiences, but it is so hard to find ones that do, or that have reasonable hours). Help us understand WHY our brains do the things they do - for most of us, not knowing the why behind things is a huge frustration. We may not understand the science, but you can bet we’ll hyperfixate on it until we do.
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Name	Anonymous
Demographic	Autistic individual
Response	how autism affects the perception of symptoms and pain. Because often it's hard for us to describe or pinpoint where a symptom or pain is coming from within our bodies.
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Name	Anonymous
Demographic	Other
Response	I think there needs to be more integrative research. By that I mean research needs to look a the whole person rather than a collection of symptoms because as i've found as i've gone along in life is that most things are interconnected. I had a lot of tummy troubles as a kid and it was just taken as that a kid with an upset stomach...it turns out that my anxiety was causing the gastrointestinal problems for years but nobody every looked beyond that.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The most research is needed on masking for autistic individuals (especially how to support in the public sector and reduction of ABA based therapy) and the effects of it long term on mental health. A neurodiversity affirming initiative made public like other countries have done such as Australia and Britain would help to reduce rates of anxiety and depression. This would help insurance to cover more speech therapy, mental health, and occupational therapy that does not promote masking. This would reduce suicide rates in autistic individuals.
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Name	Anonymous
Demographic	Autistic individual
Response	-Research done by autistic scientists -Just a better healthcare system in general
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Effective therapies for high functioning autistic kiddos
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Name	Anonymous
Demographic	Autistic individual
Response	I feel like co-occurring symptom research and autism research in general should be geared more towards gathering information from autistic people rather than any caretakers/outside input, as that way we can more closely identify, describe, and provide input based on our co-occurring conditions. Up until I got formally diagnosed, my parents never noticed any of my sensory issues as being life-changing and thought it was me being silly/dramatic despite it drastically affecting how I operate in life, so I feel like there could be a lot of information missed if research is being done with the guardians or caretakers of autistic people rather than the autistic people themselves.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	We need more adequate health care. Research and updating the education of health providers needs to be a priority. We also need to give insensitive to good and qualified professionals so they remain within the field.
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Name	Anonymous
Demographic	Autistic individual
Response	We need to change our social construct as it is intentionally made to be over complicated and it doesn’t help Autistic people at all as it opens them to be victims of abuse, scamming, to be used and taken advantage of, raped, etc. we need to quit the whole victim blaming/shaming and gaslighting that happens.
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Name	Anonymous
Demographic	Autistic individual
Response	I believe research on all things Autism is critically lacking. The interaction between Autism and trauma (cptsd & ptsd) needs to be explored further as many Autistic people struggle with some form of trauma. I am sure there is much to be understood about Autism and depression and anxiety, for me my Autism is strongly inter-linked with my anxiety. Research that focuses on making tangible changes to public or private spaces to better accommodate Autistic people is critical, we deserve to be able to exist in public spaces. Autistic people need more than just awareness, we need acceptance.
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Name	Anonymous
Demographic	Autistic individual
Response	For people with fewer support needs, direct interviews and surveys are extremely useful, especially when designed by people on the autism spectrum. Most low support needs people are very self aware and articulate about their problems. Studies about trauma, repression, and masking. In my experience autistic people, due to stronger senses, experience trauma more acutely, and due to masking in social situations, experience higher rates of physical stress symptoms. Epidemiological studies about addictions, especially regarding social media, video games, etc. Autistic people are more susceptible to addictions and are a prime target for predatory marketing tactics and recruitment efforts and autistic children require stronger regulations in these industries for their own safety. Studies on mindfulness and meditation as a primary treatment for low support needs autistics. In my experience autistic people benefit tremendously from these treatment options because so many of their problems come from difficulty monitoring varying sensations in their bodies, and from dealing with constant states of high stress. Studies on exercise as a treatment option, for similar reasons to meditation. The mind-body connection of regular exercise helps us regulate senses better. Also do studies on our senses and healthy/unhealthy compounds. Autistic people are particularly good at identifying rotten food, airborne toxins, etc. due to our heightened senses.
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD goes hand in hand with autism. This is a long survey and it's hard to focus.
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Name	Anonymous
Demographic	Autistic individual
Response	Massive groups of autistic people of all levels of communicative ability coming together whether physically or digitally to all share everything they know feel and experience to people in organizations, doctors, politicians, who can document it and publish our suffering and struggles in the world to the government and medical field workers to help us with their resources.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Research into best practices for autism and co-occurring ADHD treatment. Are ADHD drugs appropriate?
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Research needs to be done to find connections with these conditions: Ehlers Danlos Syndrome, related to hypermobility and common among other autistic people I know POTS/Postural Orthostatic Tachycardia Syndrome, common among other autistic people I know
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Additional research requires additional funding. There isn't enough funding for those that have already been diagnosed. Universal healthcare would be more beneficial.
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Name	Anonymous
Demographic	Autistic individual
Response	Research is needed in two key populations: adults with autism, and those with level 3 autism/ higher support needs who cannot answef surveys such as these
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Name	Anonymous
Demographic	Autistic individual
Response	Research into ways to treat/diagnose disorders as well as how to provide additional support in medical environments. I've been told over and over again that I don't express my pain or distress from symptoms the same way non autistic people do and that's caused people to refuse me help and not believe me until it's too late. I feel like if we had research on how autistic people experience, express, and report health problems it might make it easier to get help and treatment
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Name	Anonymous
Demographic	Autistic individual
Response	Mental health resources, work accommodations, diet, and sleep.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	a lot. research on the comorbodies should be done first and foremost, as many of them are heavily under-researched and underrepresented.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Research in the connection of auto immune disease, adhd, and autism so that doctors can identify and diagnose them
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Name	Anonymous
Demographic	Autistic individual
Response	n
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Name	Anonymous
Demographic	Autistic individual
Response	Autism in women, people of color, LGBTQ+, transgender and gender non-conforming individuals, disabled individuals, etc. The current definition of autism (and ADHD, for that matter) is written solely to describe how it impacts cisgender straight white men. Autism in women and masking. Women frequently don't get diagnosed until adulthood if at all, and one of the main reasons is that they tend to develop better masking abilities to "fit in". The connection between autism and ADHD. Is ADHD somewhere on the autism spectrum? Transgenderism and gender non-conformity in autistic individuals Comorbidity with a variety of chronic pain and chronic health issues Connection between the uptick in autism prevalence over the last few decades and the rise in technological advancement. Essentially, are we becoming more neurodivergent as a society because we've gained a better understanding of neurodivergence in recent years, or is it because we're now seeing the impact of the first few generations having been raised with today's technology? (Ex. is ADHD becoming more common because children are now growing up with access to constant stimulation?) We need a trial on autism education programs for doctors. Would it lead to faster diagnoses and therefore better outcomes for patients?
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Name	Anonymous
Demographic	Autistic individual
Response	- Autism and ADHD -- the effects of stimulus treatment of adhd on autistic/adhd individuals - "HSP" or "Highly sensitive people" - Autism and anxiety (often social anxiety) in girls specifically - Autism and chronic fatigue-- more research is needed on chronic fatigue in general
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Research on alternate therapies besides traditional ABA Therapy. Less compliance, more on communication. AAC advocacy, listening to Autistic individuals, shared experiences, medication, support for families
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More research around physical health conditions that lead to an autism diagnosis as well as genetics . More research on public awareness of the causes of autism and the impacts of physical health impairment's on the brain leading to risks of autism.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Awareness and research on impact these conditions have on autistic individuals. Implications and recommendations for treatment and treatment providers.
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Name	Anonymous
Demographic	Autistic individual
Response	More research needs to be done on the connection between autism and Ehlers Danlos Syndrome, and also why we all have GI problems. I just keep getting told "yeah they're comorbid, that's all we know" but why?? How can we help manage the bad symptoms if we don't know the mechanisms by which they operate?
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Name	Anonymous
Demographic	Autistic individual
Response	It would be incredible to have more research done on diverse participants. I can’t begin to tell you how many times I’ve heard “…but you don’t look autistic”. In fact, many people don’t believe you if you don’t look a specific way. I believe this is because so much of previous research was done on such a homogeneous group. It would be great to have research on participants who are women or other gender identities as well as BIPOC. I would also love to see some autistic people on the research team. The assessment process as it exists now is maddening and the questions don’t really make sense when you consider the minds of autistic people and how we think. For example, “would you rather go to a party or a museum?” The writer of the question was perhaps trying to get at the person’s relationship with simulation but most autistic people read that and probably think, “well, what kind of party? Is it loud? What kind of museum? Who’s there?” Etc. More autistic people involved in the research could be quite useful.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The main research that needs to be occurred is how to help autistic people with these conditions as well as how to help autistic people in their day life in general. Whether they have high or low support needs.
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Name	Anonymous
Demographic	Autistic individual
Response	We need more studies to better understand the links between co-ocurring conditions, and to start a process where when an autistic individual is diagnosed, they get screened for any co-occurring physical and mental health conditions to help make sure there are less hoops to jump through to get the help they need.
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Name	Anonymous
Demographic	Autistic individual
Response	There is definitely not enough research about Ehlers-Danlos Syndrome and how the bodies and minds of people who struggle with it are different from the average person’s. I also would like to see more research about the link between Autism and ADHD because they seem to have a lot in common.
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Name	Anonymous
Demographic	Autistic individual
Response	Research on how many people go undiagnosed as autistic and undiagnosed with co-occurring conditions is an important basic step.
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Name	Anonymous
Demographic	Autistic individual
Response	Trauma research across the board is necessary. Trauma-informed healthcare would change so many people's lives, but undermines the profit motive that drives how so much of medicine is practiced, and it takes many years (if not decades) to receive proper support. Many never do. With that in mind, there NEEDS to be research on gender, racial, and other disparities in diagnosis and treatment, and in barriers to access. I've also seen many in the autistic community starting to understand the genetic and biomechanical functions that underlie the symptoms of autism (and its web of comorbidities) by connecting existing research to improve their lives and those of other autistics. I've seen research that seems compelling and promising about connections to many comorbidities relating back to BH4, and how its dysfunction affects several enzymatic pathways that use BH4 as a necessary cofactor. With the internet and community around autism, there are many who use what exist, to self experiment and reach conclusions that seem to be potentially decades ahead of existing research, even without the expected qualifications or credentials.
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Name	Anonymous
Demographic	Autistic individual
Response	Cultural and class incompetence is MALPRACTICE: how to identify and address misdisdiagnosis in GenX women and minorities consistently and intentionally excluded from research, ASD-identity integration/coping skills, how chronic gaslighting by ignorant and biased GPs, ER physicians, specialists, nurses, therapists, psychologists, psychiatrists, educators, schools, and families lead to maladaptive coping and SI, how being undiagnosed through adulthood affects parenting abilities, class/economic issues of seeking Dx as adult even with health insurance, what are the psychological, social, intellectual benefits of ASD. What is the effectiveness of CBT, DBT, EMDR, transcranial magnetic stimulation, etc. for ASD. How does psycho-social-educational deterrents to stimming affect emotional regulation and ability to learn and firm positive self-concept? Especially for marginalized groups (race, class, gender, sex, orientation, etc.) being denied Dx or access to testing which self-tests are most reliable? How reliable is self-evaluation/testing?
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	How the stress of overstimulation and burnout effects the brain and body of autistic people. How autism ACTUALLY presents in women and people of color.
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Name	Anonymous
Demographic	Autistic individual
Response	Non biased research into autism in social settings whose conclusions do not end on a massive generalization, or infantilizing/hateful conclusion. On interacting with other social groups, on differences within the community, medical issues that are common and how they can be accommodated and much more
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Name	Anonymous
Demographic	Autistic individual
Response	I think that physical conditions need to be looked into most pressingly. For example, it is personally well known to me and in my experience to the community that autism is related to GI issues, but I’m not certain of scientific evidence of this. I also think that research that has been done has been disrespectful, disregarded, and/or undervalued.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	1. Medical provider education—Providers have said since my child and I are verbal and have gifted intelligence, there’s no reason for them or any provider to ever know we’re Autistic and autism co-occurring conditions “aren’t a thing” 2. Patient-provider interactions—I’m fortunate in that I have a master’s in healthcare communication, have gifted intelligence and worked in medical writing for 10+ years, so I have a high level of health literacy. But my Level 1 autism causes even me to struggle with medical interactions sometimes, and providers are clueless as to how to help or accommodations. I have Autistic family and friends who greatly struggle with patient-provider interactions. 3. Workplace rights & accomodations—Beyond only environment (e.g., low lighting, noise-canceling headphones) 4. Autism in adult females—Diagnosing, navigating relationships (friend and romantic), parenting, and career 5. Public education—Eliminating stereotypes & stigmas, as well as what to do/not do if an Autistic has a meltdown in public. 5a. Autism strengths—Internet focuses on negative aspects of autism. People have been shocked to hear that some Autistics can be 140% more productive in the workplace, are great at outside-the-box solutions, etc. (Source: hbr.org/2021/12/autism-doesnt-hold-people-back-at-work-discrimination-does). 6. Mental health provider education—Several psychologists refused to evaluate me for autism since I can make eye contact if needed and am female
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Name	Anonymous
Demographic	Autistic individual
Response	The research MUST listen to autistic voices and should never treat autism as a disease that needs to be cured. Autistic people with varying levels of support needs should be involved in the creation of research programs.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleep in autistic people - do sleep studies and figure out where the problem is. Mood disorders and what interventions are effective for autistic people. Effectiveness of interventions that decrease sensory overload. For example, Walmart has sensory hours from 8-10am. This is a free and easy way to make life easier but is anyone studying it? Could we have more of this in the mainstream to integrate neurodiverse people into society? What about in the workplace and schools?
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Name	Anonymous
Demographic	Autistic individual
Response	Additional research is crucial to better understand and address co-occurring conditions in autistic individuals. Further exploration of the underlying mechanisms linking autism and associated conditions is needed. Research focusing on effective interventions and treatments tailored to the unique needs of individuals with co-occurring conditions is essential. Additionally, studies examining the long-term impact of integrated approaches, both medical and behavioral, would contribute to improved support and outcomes. Collaborative efforts between researchers, clinicians, and the autistic community can enhance our understanding and guide the development of more targeted interventions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	How can we build a better community to support our autistic community. How can we build better public school systems to include children with higher support needs so I don’t get lost in the system. how can we get more inclusion for families with autistic kids in community. For me personally, my child is perfect the way he is what worries me is the lack of resources that are truly available and not being put on wait list. Or the thousands of parents being denied Medicaid for their autistic child because they aren’t “autistic enough” or have enough “behaviors”. The majority of autistic people don’t want any research done on how to “cure us” we just need to be seen and supported without so much pushback.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I think advocating to allow neurodivergent people to have a voice and the support they need through out life is complimentary enough. We have our own conscious and our own wants and needs. we dont need to be studied like rodents in a lab. We simply need to be included in society.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Borderline personality disorder, dissociative symptoms, the tie to somatic experiencing and trauma processing. The negative affects of societal expectation on the neuro divergent brain. Autism rate in unhoused people 👀
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	This. To listen to autistic people. To engage with our culture. Researchers do not understand enough for a survey or even a hypothesis. There needs to be more qualitative ethnographic style data, ideally done by researchers who are autistic themselves.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	More research needs to be conducted to find a medicine that may help an individual with co-occurring conditions like anxiety/aggression and autism - not to completely solve all challenges but in combination with other therapies (Ot, pt, speech) to help the autistic individual reach his/her full potential.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Research and funding into Ehlers-Danlos Syndromes.
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Name	Anonymous
Demographic	Autistic individual
Response	Research into autism generally in females is lacking, but even more so when adding the co-occuring conditions aspect. Any research on any co-occurances in biological females would help fill that gap.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	We need to lock down the comorbidities with connective tissue disorders. So many are not being diagnosed. DNA testing is not often available for ehlers-danlos kids. And connective tissue involves arteries, veins, hearts, skin, and not just joints. We need to know when these kids have asthma. We see a lot of that. Viruses are rampant in elementary schools. And these kids are always sick with something. But they want us in school even if we're sick.
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Name	Anonymous
Demographic	Autistic individual
Response	Research on women and how autism presents in them is sorely lacking as a whole. Research on how to help teach autistic children who are high functioning but need extra help and better ways to get them to learn is necessary since many times the way that other students are taught will not be as efficient for an autistic child especially if they are suffering from anxiety, depression, ADHD, etc. Research children who are autistic and have depression is also non-existent, despite many autistic children suffering the effects of depression and anxiety as children some as young as four years old. Also understanding how autistic people think and operate is desperately needed since many systems and tests are worded in a way that makes it hard for autistic people to understand what they are being asked to do, such as this survey.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I believe that should be more research in the link between autism and drug addiction. As well as the link between autism and chronic illness
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Name	Anonymous
Demographic	Autistic individual
Response	I hope they research about adaptive functioning and autism because it’s hard for me.
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Name	Anonymous
Demographic	Autistic individual
Response	*studying Autistic nervous systems, sensory processing, they way C-PTSD ends up affecting us because of how we are expected to disengage from our own needs in order to better fit in society/ work, etc *co-occuring physical health concerns like EDS, POTS, disautonomia *studying the BH4 pathway and how it relates to our ability to process vitamins, etc
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Please research PDA profiles in Autism by looking to other countries and the organizations serving the PDA community. Please consider studying unconventional schooling methods for Autistic individuals. Regular schools can’t always meet their needs. Higher education desperately needs more flexibility for Autistic kids. Taking 2 years of classes in subjects that don’t interest them is a huge deterrent to pursuing college education. They can be singularly focused and need the flexibility to dive into their special interests, not being forced into societal or educational norms.
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Name	Anonymous
Demographic	Autistic individual
Response	Most issues are caused by overstimulation and PTSD. Please do not listen to Autism Speaks. They treat us a a plague, something to be solved when we are really just people happily existing. We just have slightly different needs but other than that are like everyone else.
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Name	Anonymous
Demographic	Autistic individual
Response	All of it. All the research. We now know that these conditions are incredibly common in society and yet they are some of the most under researched conditions. Hypermobile Ehlers-Danlos syndrome for example is said to be possibly one in five people and yet we still don't know what causes it for sure. I have been experiencing POTS symptoms all my life and didn't know anything about it until I started exploring EDS and started talking to other patients. Conditions this common should have more information about them. Also, ABA is the most common 'treatment' for autism, yet, we know that from lots of scientific studies that it is actually trauma-causing and simply causes autistic people to be forced to mask. We don't need to be cured, but we do need to know our options and how to decrease and treat certain symptoms that may be troubling to us such as intense sensory issues, including texture and food issues. For example, there is a medication that we now know used off label in low doses helps decrease autism symptoms. Yet we don't know why, and it's not commonly known. Also, the current testing for autism is beyond outdated. It is focused on what someone call low functioning people, and specifically boys, and specifically children. More and more autistic people are getting late diagnosed and a large percentage of them are women.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	There needs to be research addressing what co-occurring conditions autistic people are predisposed to, the interactions between the autistic neurotype and these co-occurring conditions, as well as how different and new treatment/support plans can help different individuals with managing their autism and other conditions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	There needs to be more research on women and afab people with autism and there especially needs to be more research on people of color. most of the studies we have to work on, are made on young white men. we all come from different backgrounds and what a white woman experiences with autism will absolutely be different compared to what a person of color experiences. when i got tested I was asked so many questions that barely applied to me. for example i was asked if i ever disrupted classes or got up and walked around. being raised by immigrants i was disciplined in ways that most white people are not. I wouldn't dare move from my seat as a kid (i even have trouble with it now) even if i had to use the bathroom. i dont eat bland food because in my culture we dont eat bland food. i still have comfort foods but its nothing that white people would like. white autism is different than autism in people of color.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I would be interested if it would be beneficial to include comorbidity screening in Autism screening and testing.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More research into what autism looks like in girls is critical. From my understanding, most research into the topic studies exclusively men. There should also be research into how race plays a part in getting a diagnosis and proper treatment for autism. Many autistic POC are left out of conversations surrounding autism, which leads to discrimination in diagnosing autism. In turn, this can lead to these individuals not being treated for commonly co-occurring conditions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Significant! Include multi-generational studies, multiple genders, from multiple ethnicities.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Free Falestine! Stop murdering babies! You're bombing children!
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD and Autism is a huge one. I know many people in the community and we all feel like we're navigating our own complex psychological dynamic. A lot of the things that may be 100% true for Autism alone or ADHD alone are completely not relevant for AuDHD. Some of us love being social, some of us are really good at understanding and dealing with emotions, some of us are somewhat consistent and you just never know what you'll get. They say if you've met one person with Autism you've met one person with Autism. It's the same for Autism w/ ADHD. It feels like we've got our own condition going on because of how the two interact. Other than that PDA (Pathological Demand Avoidance), I've found there's significantly more research on this outside the US and that's unfortunate because it covers a subset of Autism that many of us fit more into than the standard pieces of the spectrum. The aspect that confuses a lot of assessors even. For example, many of us who identify as PDA have people as a special interest (myself included) and have spent our entire lives studying Psychology, Sociology, Philosophy, Religion and anything else that helps us understand people. That makes us anomalies often in the Autistic communities, but we're no less Autistic.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I think we should research more on autistic Women, and autistic adults (also specifically women.) Autism can look different for us because we grow up with more pressure to blend in and be nice. This pressure can make our masking skills very good, which can hide our symptoms to others, leaving us in the dark about who we really are. I grew up thinking I was naturally stupid, and felt so much shame about myself because on the inside, I felt so different to everyone else. I didn't know what was wrong with me, just that something was. I was severely bullied in school for being Autistic, but didn't actually get diagnosed until I graduated early due to the bullying. If autism wasn't seen as a "boy's disorder", maybe I would have felt the relief i felt when i was diagnosed much sooner. I felt like a weight was lifted from me, that nothing was "wrong" with me, i am just Autistic.
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Name	Anonymous
Demographic	Autistic individual
Response	It's not about any one co-condition. It about the support to identify them and the rigorous science around treatment that will satisfy the most literal, logical, and cynical person And the patience and time of the care giver to explain and listen and explain again.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Understand that autism and co-occurring conditions are not a monolith. Each person (both children AND ADULTS) experience their own version of difficulties even if there are lots of similarities between them. Research to "prevent" autism is gross and ignores those of us who are currently living in a world that doesn't want us. Research the effects of growing up undiagnosed. Research autistic adults in the workplace and how social structures tend to alienate and exclude autistic adolescents and adults. Research the nervous system and common dysfunction of systems like the autonomic nervous system and how it could be related to the nervous system of autistic individuals. Why are we more likely to experience physical health issues such as neurological damage and autoimmune diseases? Relate it to the trauma we all experience as children and how it affects our health in the long run. Research why our society is fundamentally traumatic to autistic individuals and why so many "autistic traits" are traits of cPTSD.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	I feel that autism in women, and late-diagnosed women is extremely important. Because of the inherent need for women and girls in our current society to conform and perform, it is an easy skill for them to suppress or hide their challenges. Women also are easily convinced to shrink their needs, and again suppress them. Because of this, I have learned to hide very well, and even convinced myself for much of my life that nothing was wrong. There is research needed into high-masking individuals, because we are not seen. Even my Dr. claimed I could not have autism, because I made eye contact with him. We can make eye contact, that's absurd. I make eye contact because I know I am supposed to, even though I do not want to. Research is needed in identifying and helping such individuals who can mask sufficiently for long periods of time.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Autism and PTSD. Myself and most autistic people I know suffer from ptsd. I wonder if autistic people may be more susceptible to developing ptsd or if the world is more traumatic to autistic people.
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Name	Anonymous
Demographic	Autistic individual
Response	Research late realized/ diagnosed autistic folks who identify as women of color.
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Name	Anonymous
Demographic	Autistic individual
Response	research about how trauma effects autism would be useful. A lot of autistic people talk about how we cant separate our autism from our trauma, and it would be nice to learn about,
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	There needs to be a better bridge between the autistic patient and their medical team for communicating about their co-occurring conditions. The pain scale 1-10 is notoriously confusing to an autistic person, so even just starting there might lead to better communication and better outcomes.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	We need further research to assist in generating profiles of what comorbidity patterns show up and provide doctors and therapists protocols of evaluation for both physical and mental health conditions upon suspecting any of the cluster of disorders with high comorbidity. For example: Suspecting Autism should immediately come with physical evaluations for hypermobility and connective tissue disorders like EDS, allergy testing, and for mental health conditions that are commonly comorbid. This also means more research to see how comorbidity alters presentation of single disorders, as there is a desperate need to have clinicians understand how something like ADHD might mask symptoms of Autism, particularly in low support need patients.
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Name	Anonymous
Demographic	Autistic individual
Response	The link between masking of one's autistic traits, and anxiety/depression.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	We need to parse out a lot of details. First of all, make sure autistic people are involved in the leadership of any study about us, or there will be misinterpretations by the allistic people who are looking at us from the outside. Second, look at how much misdiagnosis of borderline and of bipolar are done to autistic people who don't have those disorders, but are misinterpreted in our behavior. We are confused and having difficulty expressing ourselves, so they believe they know what's going on inside when actually they just need to better understand autism. We also need more studies about how some ADHD meds like amphetamines can cause agitation and destroy the lives of autistic people. We have trouble communicating with the doctor about our symptoms, and connecting them to the meds. But this time I kept a spreadsheet and over the course of months it was clear that Vyvanse was making me not myself, I felt aggression and self harm, and anxiety like never before. Apparently there are limited studies about autistic people experiencing this, but we need more doctors to know about it and more studies, so people like me don't literally have our lives torn apart by "trying ADHD meds".
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Name	Anonymous
Demographic	Autistic individual
Response	I wish that people would actually ask actually autistic people including self-diagnose autistic people what their experiences are and take it at face value cross-reference that data and actually do something to implement strategies that we know are likely to work. I don't think it's helpful to probe autistic people for more questions about autism and then not use the information in a way that actually supports us.
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Name	Anonymous
Demographic	Autistic individual
Response	We need more research on ME/CFS and long covid. It is well known people with autism are more likely to get these two conditions and they are grossly under researched and embarrassingly denied by members of the medical community. People are dying from lack of treatment. We also need research on the presentations of autism in females and changing the education of our teachers and anyone interacting with children so that they are not just taught the stereotypical form of autism. Unmasking and how to is so important. Masking leads to burnout which leads to disability which leads to the inhability to work which requires more supportive resources. We also need research on how to diagnose autism. A lot of autistic people are very unhappy with how the process is not even made autistic friendly, like asking questions that are unclear or unnecessary and play to a stereotype.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	We need to look at WHY comorbidity happens. Is it genetic predisposition? Is it social consequence? Can it be prevented or is it inherent? But we also need to raise awareness for what comorbidity looks like, ESPECIALLY in women, and people of color, who are misdiagnosed due to lack of understanding of how the same condition can present differently based on cultural factors.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Research women. Please for everything, research women. So much of what we "know" about autism is focused on the CIS White Male and that is partially why it's so hard to get diagnosed and get the help we need. Research how many women are autistic and get IIH. I have it and have no reason for it at all. I've dropped the weight, no tumor, and no vein issues. Look at ADHD and Autism but in women! Update the DSM to include things about masking and how women are more likely to mask because of the societal expectation. Look into how many women who've dropped out of school later were diagnosed as ADHD/Autistic. Just look into women and try to keep it fair. I'm so tired of finding so many doctors that think adults can't be autistic. That women can't. Or that it's just a "fad". It's real and debilitating.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The MTHFR mutation's relationship to autism.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	There needs to be significantly more research on the needs of autistic adults. The DSM doesn't even have a definition of autism in adults, making it extremely difficult for adults, especially adults assigned female at birth, to be diagnosed and get acomodations. By the time we're adults, we have learned to mask, and we need different kinds of help and accomodations than children do. We're tired of being infantalized. There needs to be research on how to best acomodate autistic adults in the workplace, what kinds of social support they need, and research into better diagnostic tools for female adults especially. There needs to be more research into how autistic adults mask, and the consequences of such masking. There needs to be research on how neurotypical people can be educated to better communicate with their autistic peers, family members and coworkers.
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Name	Anonymous
Demographic	Autistic individual
Response	Research into alternatives therapies for autistic people. Therapies that address how autistic people feel and experience the world.
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Name	Anonymous
Demographic	Autistic individual
Response	Researchers need to talk and listen to actual autistic people and the autistic community. Especially, BIPOC and LGBTQIA+ autistic people. We know more about what we go through then allistic people.
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Name	Anonymous
Demographic	Autistic individual
Response	The biggest issue with existing research is that it is largely designed, performed and interpreted by non autistic people. Those who are not autistic cannot fully understand or appreciate the challenges or experience of being autistic. It is necessary for autistic people to be included in research processes and for us to be the authority on our own needs and experiences.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Better diagnostic tools made readily available. I didn’t get diagnosed until I was 44 and along the way was misdiagnosed as anxious, MS, arthritic, etc.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	More research is needed on how symptoms of co-occurring conditions present in girls and people of color and in people of other marginalized groups. Most of the research to date was done using upper middle class white boys as subjects.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	co-morbidities. BH4 pathway could use a real good look. quit treating symptoms and treat the source. EDS, POTs, BVD, migraines, fibromyalgia, gastrointestinal issues. also maybe make health classes teach ppl what normal bodies should be doing instead of showing the worst case scenario pics of various sexually transmitted infections and trying to scare the hornballs into abstinence. teach about female condoms, why do we need an RX for them and u didnt hear of them til my 30s?????
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Research focused on women and girls, beneficial supports and accommodations, education of those who likely engage with people with autism such as teachers, school admin, first responders, health professionals, and community transportation services.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The tests to determine autism are extremely flawed. There are a million “it depends” running through my head with each question because they just aren’t specific enough or clear enough. I like this one because it lets me write and isn’t multiple choice. I would say that any test or research on actual people needs to eliminate the multiple choice, or always provide a place in which a person can expound.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Issues with mind mapping and memory in autism need to be expanded on, both in neurological and educational research. I had been complaining about the memory issue for years but neither my sons earlier provider and his IEP team in school knew anything. A change in autism provider and access to an educational consultant with experience with autism made all of the difference. They told me it seemed to be a common issue with autistic children.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Research into how autistic people perceive their body state and how they communicate their needs is needed. We don't have the same perception of self as ballistics and that makes communication with allistics difficult and extremely dangerous when in a medical crisis.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	How autism expresses in femme coded people, and the mechanics of masking. No one cought that I was autistic until I was near 30.
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Name	Anonymous
Demographic	Autistic individual
Response	It would be nice if they could do more research on autism in girls.
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Name	Anonymous
Demographic	Autistic individual
Response	more surveys and health screening for co-occurring physical and mental conditions in people diagnosed with autism, more research on women with autism and adhd since autistic traits are often overlooked with adhd diagnoses
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Listen to autistic people. Listen to autistic teens and adults. Do not base diagnose criteria based on biological sex but rather whether or not an individual regardless of biological sex exhibits those symptoms and or meets the diagnoses criteria for autism and it's co-occurring health conditions. Yes some thing may be more noticeable or prevalent in males than in females or vice versa but it is important to treat both as a whole and two separate categories.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I think most testing is needed on what is causing autism. I know that most people think it's always been here but I having a child with severe autism and working in the healthcare field see a high increase in which I dont understand why this sudden increase especially at this level. In the beginning of my healthcare career I met 1 child. And I worked in mental health. This was 1 child in 5 years I met then in 2020 I met 10 kids in the same state with severe autism. It could be a coincidence but I feel its increasing. I wish I could know what caused this in my child.
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Name	Anonymous
Demographic	Autistic individual
Response	How do we survive? Autistic people need appropriate stimulation and ability to control sensory stimulation to some degree, but our economy/society will not “cater to”/meet the needs of autistic people; instead, forcing them to mask to fit in and survive (maintain employment)— until we can no longer do either. Our talents are vast and valuable— but we cannot pass the social/hierarchical litmus tests that all workplaces seem to demand (85% of autistic people are unemployed, but many are perfectly capable of working/learning; people just feel uncomfortable that we don’t think the same ways). I want to solve problems, it’s what I am good at; but I can’t do that when the majority of my job is really “relationship management,” not because my work requires it, merely because of social convention(?)/comfort of others. Finding solutions or treatment to help alleviate discomfort/pain of POTS, constant nausea & digestive issues / connective tissue disorders to would help. I’d say maybe I could mask better if I weren’t in pain, but I’m too exhausted to even think of masking!
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Research on WOMEN AND GIRLS WITH AUTISM. Links between adhd/autism/bpd.
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Name	Anonymous
Demographic	Autistic individual
Response	Teach allistic people how to communicate clearly and directly. That is the biggest barrier. We're seen as "defective" and all the burden to try to "fix" it is placed on us. However, it's a double empathy problem—communication across the allistic / autistic divide is difficult for *both* parties, but only one of those parties is expected to put in the work. It would also be helpful to understand what kind of accommodations would work in this context. Existing concepts around accommodations seem to be based almost entirely on physical rather than social limitations. So, e.g., when the problem I'm facing is a work culture in which employees are expected to know when to follow and when *not* to follow stated policies, I don't know what the accommodation is supposed to be. What I really need is for people to just... not lie to me about expectations... but what's the non-antagonistic way to ask for that, and is there a reasonable way to address that when it's a systemic aspect of work culture driven by political pressures that my supervisor does not control? Educating employers, health care providers, etc., about accommodations for social or communication difficulties related to autism would also be helpful. When I've asked for communication accommodations in a health care context, I've just been told "we can't do that". I don't think they even recognized it as a legitimate accommodations request.
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Name	Anonymous
Demographic	Autistic individual
Response	So much research is needed. I’d love to know more about how autism presents differently in a diverse population than how it presents in young white boys, which is most of the research we have now. I think the diagnostic criteria needs a complete rewrite. I’d love to know if there’s a connection between autism and hypermobility/EDS and migraines. As well as more research on how it interacts with ADHD, specifically in girls, women and trans/nonbinary folks. I think there also needs to be research on how the lack of rights for disabled people is ruining lives. Some disabled people need more support than others but that doesn’t mean they should have their agency and dignity taken from them.
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Name	Anonymous
Demographic	Autistic individual
Response	Funding existing research more would be helpful, for the record, but here goes: 1) Autism is not a disability. It is a SOURCE of disabilities. The field will never move forward until we contextualize traits in their proper context. 2) How disinformation about autism spreads through platforms like tiktok 3) The history of neurotypicality and what "abnormal behavior" actually means 4) How to teach already licensed doctors (MD & PhD) the basic qualities of autism 5) actually [profanity redacted] useful autism assessments. good god. It's bad out here. 6) what potential social safety net programs for autistic people could look like 7) how existing disability services could be updated for autistic perspectuves 8) why autistic people have trouble recognizing their own divergence until forced to reckon with it? 9) what in the [profanity redacted] [profanity redacted] a "neurotypical" even IS?? Everyone's brain is made of jelly and smells. It has the voltage or a low battery. What do you MEAN "typical"? 10) the way autism's current disability status is being weaponized by oncoming anti-trans legislation and a million more. Won't matter if there's no money in it.
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Name	Anonymous
Demographic	Autistic individual
Response	More research on young girls and boys who do not exhibit the “traditional” autistic traits. Especially girls or those assigned female at birth who do not show “textbook autism” and autistic adults who have goin 20 plus years undiagnosed.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Research on the best practices for treating depression and anxiety specific to autistic patients
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Name	Anonymous
Demographic	Autistic individual
Response	A better understanding of how autism can present differently based on cultural and gender differences. Researchers should help better inform the public on what autism can look like so high masking autistic people can also receive the help they need.
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Name	Anonymous
Demographic	Autistic individual; Researcher; Other
Response	Postural orthostatic tachycardia syndrome (POTS), Ehlers - Danlos Syndrome (EDS), and CPTSD
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Autism and Correlation with: Eating disorders , self harm, bullying, suicidality, and comorbities
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep research would be a big one for us. Also research on how to treat anxiety for children who are too young to safely take medications. Additionally, therapy services that do not involve rewards or punishments and respect bodily autonomy for autistic children in need of mental health support are desperately needed. It seems that everything that is currently available is ABA based. ABA may be widely accepted but it causes ptsd, increases anxiety, increases masking, and sets children up for grooming. It also has been shown to be ineffective by multiple peer reviewed studies, including the largest study on ABA recently conducted by TriCare.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Please do more research for women. I’m 28 and I’ve been masking my entire life. I’ve been tested and told I communicate too well to be autistic. There is not enough data on diagnosis women. Especially adult women.
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Name	Anonymous
Demographic	Autistic individual
Response	There are so many co-occurring conditions it seems impossible to isolate one way to improve. ARFID, EDS, seizures, and other conditions need to start being treated appropriately so that autistic people can function and not kill themselves before they reach 40 years old.
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Name	Anonymous
Demographic	Autistic individual
Response	To really help autistic people with other conditions they're dealing with, we need research that looks at the whole picture. This means understanding how different issues, like mental health or sensory sensitivities, really play out in day-to-day life for someone who's autistic. We need to figure out what kinds of help work best for each person, because autism is so different for everyone. It's also important to keep an eye on how these issues change as people grow up – what challenges do they face as kids, teenagers, or adults? We should also dig into how to make therapy and support more autism-friendly. Plus, it's not just about the individual; we need to think about their families and the people who care for them too. How can we make things easier for everyone involved? And hey, why not see if technology can lend a hand? Maybe there are cool new tools or apps that could help. Lastly, getting experts from different fields to work together could lead to some great new ideas. So, it's all about connecting the dots between different areas to find the best ways to support autistic people with the other stuff they're dealing with.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Obviously there are many strides to be made in research but the biggest issue is that so many health practitioners and counselors/therapists are not privy to or taught the findings of this research so they are unable to effectively help and treat their autistic patients. Particularly adults
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Name	Anonymous
Demographic	Autistic individual
Response	how the hell would I know I'm not an expert. if I had solutions I would be using them
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Name	Anonymous
Demographic	Autistic individual
Response	Researchers should trust autistic people more when they are relating their own experiences. I spent 60 years without knowing what was going on with me because as a girl and woman, no doctor ever even suspected. No one ever talks about how strongly hormones affect autism and ADHD in women. We definitely need more research into fluctuations in estrogen, such as menstruation, pregnancy, and menopause, and how it affects us. Menopause tore the mask right off my face and I can no longer hide myself. Which makes work and relationships extremely difficult, if not impossible.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Hypermobile disorders such as Hypermobile Spectrum Disorder and Ehlers-Danlos, stress-induced autoimmune disorders. Also, there is a need for affordable / free assessments for adults that specifically look for dissociative-type symptoms and recognize those symptoms and behaviors as low-support / Levels 1+2 Autistic people's masking.
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Name	Anonymous
Demographic	Autistic individual
Response	Research done with actual autistic people running the research or at the very least consulted, focus on the autistic individual and not the family or caretakers
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Research on how to train therapists to be autism friendly. Most CBT and DBT therapy modalities are useless for autistic people such as myself who have trauma.
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