Question 3 Responses

What Causes ASD, and Can Disabling Aspects of ASD be Prevented or Preempted?

Topics from Responses to Question 3

• Acceptance
• Environment
• GI and Microbiome
• Gene-Environment
• Genetics
• Pregnancy and Birth
• Society
• Current Priorities Still Relevant
• Question Area Not a Priority
• Miscellaneous
• Multiple Themes Addressed

Acceptance: Research on genetic and environmental factors that may contribute to autism should be conducted with the goal of improving the lives of autistic people, not to prevent or cure autism.

Respondent	Response
Kristen Herrett	Much like question 2, it is far to easy for this type of research to descend into eugenics. Unless individuals with autism are part of the research team for ethical reasons I see more harm than good coming out of this research
Anonymous	The focus should not be on prevention, it should be on supporting autistic people from birth so that they can learn and develop in the environment best for them
Anonymous	Emphasis on disabling aspects good. Be extremely specific about the disabling aspects to which you are referring.-- Many are only disabling due to how the rest of society is taught to treat people outside the norm. Environment is a questionable/fuzzy, frequently parent-blaming scenario, very delicate ...be very specific and clear here
Liz	More research into the genetic causes of asd would be useful. While trying to prevent some of the more disabling characteristics of asd might be welcomed, most autistics consider their autism a part of who they are, and attempts to prevent autism would be changing who someone is.
William Ash	I think the impacts of autism can be very debilitating. This really needs targeted responses. But autism does bring benefits, not only in individual rewards, but also social ones as well. When you talk about the ""cause"" of ASD, that is kind of look for the cause of humanity. The genes exist because they bring benefits. I think as a policy question, there needs to be more work on what it means to ""cure"" neurodivergent conditions. Obviously, eugenics did try to ""cure"" society from deviant human genes. There are thing I do not like about my autism, but there are cognitive benefits as well. From a policy standpoint, how do you divide positive approaches to a ""cure"" while respecting us as autistic people.
Josh Compton	As this research progresses, care should be taken to respect the full spectrum of autism—that is, to recognize the balance between researching “cures” and respecting neurodiversity.
Lucas Kunach, Fraser	For this section, please ensure that neurodiversity is protected and celebrated!
Ryan	Horrible question in general. As an autistic adult this frustrates me and deeply saddens me. This shows you need to change your entire mindset. You need to listen to autistic advocates. You need to change how you view autism. This question oozes of ableism, utilitarianism, and deficit-base nonsense. AUTISM DOES NOT NEED TO BE PREVENTED OR PREEMPTED! I say we need MORE people with autism so their strengths can better influence society. Though NOT to prevent autism but in order to support autistic people and their families and their thriving, I say more research is needed and to be prioritized on: genetic and environmental risk factors, and identify where those factors exist...like perhaps industrial toxins, pollutants, chemicals in food and everyday products...with the goal of using this to hold others in society accountable
Christina Gleason	I think it's important not to report any such research results as ""what to blame"" for someone being autistic. Autism has survived millennia of evolution, so it serves a purpose for humanity as a whole, and the very nature of Question 3 presupposes autism as a negative outcome.
Dax, Autistic Self-Advocacy Network, Volunteer	Medicine often focuses too much on preventing disability, to the point of losing focus on quality of life. A child forced to act neurotypical may seem less disabled, and doctors may think that is a better outcome--until the stress of doing so causes long-term emotional and psychological damage. In the teen and adult autism community, this is a common story; many of us whose childhood therapy focused on making us seem more normal ended up disabled as adults because of the emotional fallout. We should instead focus on teaching useful skills, without being biased toward the ways typical children do things.
Anonymous	Policies should ensure that research into the causes of autism does not involve anything that would cause harm to autistic individuals. Too often, such projects have a view to eradicate autism or other neurodivergences such as ADHD or dyslexia, viewing them as something that needs to be cured instead of a form of cognitive diversity.
Anonymous	Tread carefully on this, so there's no attempt to completely wipe out autistics. When I mentioned my worry about prenatal testing and abortions there's something I didn't add that I think now would be a good time to add. Some autistics will need care 24 hours a day, 7 days a week for their whole life while others won't need as much help. Please make sure the prenatal test only detects the part of the spectrum where a person will always need care 24/7 before the prenatal test is released if it happens. Remember that genetic factors are a terrible reason for sterilizing autistics whether the sterilization is reversable or not. A lot of autistic parents are actually better parents to autistic kids wherever their kids are on the spectrum, as opposed to neurotypical parents. Intervene as early as possible to decrease the risk of the really disabling aspects of autism, and don't try to cure the person because they're not sick. Just focus on improving they're quality of life.
Anonymous	I oppose all efforts to ""prevent"" autism because the only way to prevent autism is to prevent the birth of Autistic human beings. However, I support finding ways to support and accommodate Autistic people such that they are not disabled by society.
Anonymous	Identifying and preventing the disabling effects if possible should be the highest priority. Until there are meaningful societal supports available for all autistics, identifying possible causes of autism only serves as eugenics.
Rappahannock Area Autism Council	For many in the neurodivergent community, autism is not seen as a negative; therefore, it is important to make sure that autism spectrum disorder itself is not portrayed as something that should be ?erased? or ?minimized.? However, it is of course true for others and their families that pervasive symptoms of autism are very disabling and destructive to both the individual and the family. For these individuals and families, preventing progression of the disabling aspects of autism or reverting symptoms would be welcome, so the possibility and hope for that treatment, and research into that is welcome.
Daysi Jimenez	No se sabe la causa y no hay prevencion. Es una forma de ser y en muchas maneras la neurodiversidad es buena. Translation: The cause is unknown and there is no prevention. It is a way of being and in many ways neurodiversity is good.
Paulina , Parent	Es importante, pero la pregunta debería ser person centered. No se si pueden prevenir los apectos ""discapacitantes"", o más bien cuales son los apoyos que las personas con autismo necesitan para enfrentar las cosas que son dificiles o desafiantes para ellos. Translation: It is important, but the question should be person centered. I do not know if they can prevent the ""disabling"" aspects, or rather what are the supports that people with autism need to face things that are difficult or challenging for them.

Environment: More research is needed on environmental factors that may contribute to autism.

Respondent	Response
Lisa Wiederlight	ALL of these are more important than studying only genes, and studying eye gaze. This has been very disappointing that we are just talking about this or focusing on it after so many years of not talking about it. Look at other factors, like food, personal care products, home care products, make-up, what is in this stuff? It's bad...and gets into our bodies and our children's bodies. Uncover every stone possible.
Chris Colter	We need to get to the bottom of which chemicals are causing autism and why kids cannot expel toxins from their bodies. Something has changed over the past 20 years because now it is an epidemic. The CDC also needs to recognize it and label it as an epidemic unless they are hiding something. There is no excuse for this not to be called an epidemic. Epigenetics and the microbiome are totally involved in autism.
Catherine Martell, autistic, health care provider	environmental risk factors
Amy Morosini	Environmental risk factors, Genetically modified foods
Trisha Gallagher, Public Special School Principal	Environmental risk factors.
Wayne, Parent	Again, we need to study the genetic possibilities, but also environmental factors such: 1: Childhood Vaccines 2: WiFi 3: Pollution in water and food air 4: Chemicals in food
Deborah	Environmental risk
Elissa Leonard	If ""more research is needed"" on the harms done by folic acid hidden in the food supply, then why was a universal intervention undertaken? Medical Ethics 101 informs us that universal interventions should not be taken if they may cause more harm than good. If they are taken, they need to be monitored with the strictest standard of care. Why wasn't any public health entity charged with strictly monitoring folic acid interventions for possible predicted unintended consequences? The masking of B12 Deficiency (which causes cerebral atrophy in babies) was predicted. The fact that not all people with common gene variants can metabolize folic acid was predicted.
Jan Carpenter, parent of two handicapped children	There should be more studies and surveys of parents who have autistic and disabled children to find out if there are any commonalities. For instance; I was put on prozac when I was pregnant by a doctor who said there wasn't any issues with the drug in pregnancy, but how do they know? No one surveyed me after it was known my child was disabled. These diagnosis's don't always happen until several years later. I think these parents should be surveyed to see if there was any commonalities either environmental or otherwise that could be causing this alarming rate of autism.
Parent	I feel strongly that environmental factors triggered an adverse immune response in my son, causing ASD.
Anonymous	How auditory and visual distractions (like from screentime interferences) affects the social interaction & communication regions of the brain.
McKenzie Hanson	Intergenerational trauma and the physiological changes that occur over time from complex trauma cause autism. It’s my wild guess but nobody wants to research family violence. It’s not just one parent it’s the way the world was built to view people with different needs as disorders and the pressure to conform for parents wanting their child to succeed. Autistic children and adults need play therapy, music, art and dance resets the nervous system. STEM programs, specially gifted programs, play based programs that encourage all curiosities will help develop autistic minds to be the most successful and confident they can become. Families going through divorce or low income families should be focused on to provide outlets for children to develop despite problems at home. Mental health workers at every school to have a 1:1 check up weekly with students would be so helpful.
mother, guardian, and advocate	Environmental risk factors. Haven't we wasted enough money on the great genetic [redacted]? A billion research dollars spent and still no autism gene. Come on. Get real.
Christina Newendorp	It is frustrating that we seem to know about as much about the etiology of autism now as we did almost 20 years ago, when my oldest son was diagnosed. If we know that the environment is interacting with genes as the broad description of the cause, then which environmental factors are actually causing autism? I would like to see environmental factors researched more, because genetics hasn't yielded much useful information.
April Morome, Autistic person	Since autoimmune problems and fecal microbiome imbalance have been detected in autistic mice and in autistic human beings upon studies done by scientists, I wonder if more microbiome is for certain, a causal link to ASD, not just genetic factors. So, fecal microbiome transplates could help lessen severe symproms of ASD. But, it doesn't completely get rid of autism because ASD is in part, due to genetics, only partially.
Anonymous	Since there is no such thing as a genetic epidemic, and the numbers are climbing even aside from overdignosis and diagnosis substitution, the environment such take precedence, since that would be the only logical place to intervene. Biggest gap in research is looking at ways the medical system is impacting infants--vaccines at too young an age, overuse of antibiotics, and medications whose damage is ignored.
Tom Whitehurst	It is most important that the research look at potential environmental causes, in addition to the genetic studies already in full swing. Research labs and universities should be open to studying all potential causes, without being shot down every time they look at any relationship to vaccines. As a scientist, I know that you have to allow for all possibilities. Witch hunts do not make for good scientific research.
Becky Rosenberg, Partners in Policymaking (Maryland)	Environmental triggers
konjoo lee	ADHD is a brain abnormality that occurs when electromagnetic waves are irradiated to the brain as electromagnetic waves flow across the eye-brows, and may be accompanied by eye diseases. Autism is a symptom that occurs when an electromagnetic knife crosses the nose. Occasionally, when the eyebrows and nose are irradiated with electromagnetic waves at the same time, they have two symptoms of Autism/ADHD. The most important method of treatment is to get out of the electromagnetic environment. Electromagnetic waves are the brain area of the bed, in particular, due to the influence of water vein EMR generated from underground rivers rather than artificial electromagnetic waves. The next step is to restore the attachment of negative ions to the brain or neural network due to electromagnetic waves or the formation of a hot zone like an electronic oven. This will be possible by tuning the brain-body control system. Tuning is to adjust the flow of brain electricity just like a computer malfunction.
Anonymous	We need to stop obsessing about vaccines and look at other environmental factors that might cause ASD, including exposure to pesticides and other neurotoxins.

GI and Microbiome: More research is needed on how the microbiome and gastrointestinal issues may contribute to autism.

Respondent	Response
Kathleen	Microbiome
Ronni Blumenthal, Phelan-McDermid Syndrome Foundation	Epigeo Érica and the microbiome. GI issues seem to be a consistent concern across genetic conditions linked to ASD.
Kirsten Johnson, Parent	Microbiome
Chiara Jaffe, Parent of a 14-year-old with Down Syndrome & Autism	Given that there is a subgroup of individuals with Autism who experience significant gastrointestinal issues, often of unknown etiology, and for which treatment is not consistently effective, future studies should include research on the gastrointestinal microbiome.

Gene-Environment: More research is needed on gene-environment interactions that may contribute to autism.

Respondent	Response
VIRAJ D. VYAS, PSW, CHW, Job Coach, A volunteer Advocacy Ambassador for Autism Speaks.	Causes of ASD: Allergy induced Autism Gene-environment interactions. 1) Faulty detox system because of MTHFR gene. 2) Lower immunity. 3) Allergies including food, environmental and chemicals. 4)Vitamins and minerals deficiency. 5)Enzymes deficiency. ASD can be prevented: 1) Lab test for MTHFR gene and treatment for pregnant mother and new born baby. 2) Check family history of Auto-immune disease. 3) Breastfeeding for 2 years. 4) Lab tests and treatment for vitamins/minerals deficiency and allergies. 5) Use family history of allergies to help a child. 6) Provide organic clean food without artificial sweeteners, colors or preservatives. 7) Do not recommended Vitamin A palmitate because of MTHFR problem. 8) Use chemical free products including diapers, soap, shampoo, wipes, house cleaners, dishwasher soap, and laundry detergents. 9) Parents or care givers keep daily log book for food, medications, vitamins, physical symptoms, and behavior symptoms. Eliminate any allergic food and find professional help.
Danielle Draut	We were part of genetic study but never was provided the results or findings from that study. This information needs to be shared with those that participate. I do believe since I have two children on the spectrum that it is genetic. My younger brother was diagnosed in his 40's. He wish he knew earlier. I also think that environmental factors play a huge part, perhaps they are exposed and markers that are effected by that and then develop autism. Environmental risk to determine some who is predisposed for developing autism. I also think its has a large part of genetics. Both my dad and husband were in the military and exposed to chemicals etc... so perhaps that plays a large part in reproductive organs.
Sharon Montgomery, U.S. citizen	Gene-environment interactions.
Michael	In my opinion the most important research priorities are environmental risk factors, gene-environment interactions, and the potential role of epigenetics.
Anonymous	Genetic and environmental risk factors
Beth Mortl	The most important piece of autism and biology, is the methylation cycle and genetic mutations that impact the methylation process. There are many environmental hits on babies and if their genes are mutated, they impact detoxification. Too many toxins create systemic and brain inflammation impacting hormones. Autism is behaviors that come from a toxic overload in a developing body and toxic world. Genetic mutations for the baby or child and how they are incapable of clearing toxins from vaccines, bacteria, viruses, microbes, fungal infections. A skewed Th2 immune response will not clear pathogens and our kids are sick.
Jennifer Reppond, parent of ASD teenager / doctoral student	In all my researching, I believe that autism is truly genetic - but in researching epigentics - there are things in our environment that turn off / turn on certain aspects of our brain / body function. So, while I do believe that certain dispositions are passed down through hereditary means, I believe that our toxic environment is the things that push the buttons to turn off / turn on what happens in the brain causing a spectrum of problems that people with ASD experience. Our toxic environment, unfortunately, comes in the form of the way we grow/harvest crops with herbicides, pesticides, hormones, antibiotics, over abundance of sugar (fake sugars, too), fake foods, and chemically derived foods, preservatives, pollutants in the air and water and yes, the toxic elements of all vaccinations. I am not saying that any one of these things ""causes"" autism. I still believe that we are genetically disposed to the disability, but I believe everything mentioned above contributes to the body's reaction to being bombarded by these things all at once - all the time.
Diana Autin/Lauren Agoratus, SPAN Parent Advocacy Network/Family Voices NJ	Some types of autism are clearly genetic (e.g. Fragile X Syndrome). There are also some familial genetic factors that result in autism. Current research indicates that autism may be caused by physiological or environmental factors, or a combination of both, so examination of solely biological factors is inadequate. Research indicates that there are multiple causes of autism, both biological and environmental. With the increase in autism prevalence, identification of genetic and environmental factors is essential.

Genetics: More research is needed on genetic factors that may contribute to autism.

Respondent	Response
oldladywithautism, autistic elder	It would be ideal to find markers in specific genes or tests such as neuro brain scans or electroencephalograms (which show a great deal of promise at the moment) to rely on to diagnose Autism. Current diagnosis relies on behavioral clues interpreted by the professional and subjective to the individual practitioner's interpretation.
Michele Lopez, The Guidance center-Early Head Start	How children get autism? Genetic testing, before conception and after birth, is the best research in my opinion...
Janay	While I believe that long term studies need to be conducted on how much environment plays a role in the understanding of ASD, I also believe with the amount of children currently being diagnosed or that go undiagnosed until later in life is at a crisis point. We need study of the genes and the DNA of these individuals to determine if their is a genetic difference between ASD individuals and neurotypical individuals.
Elke Drayton	Genetic is the most important part in that study how we can we prevent it.
Denise Wildrick, Autistic Adult and Parent	I dont so much care what caused it, as how we identify it. We don't even know what the gene markers are, why are we looking at their interaction with the enviroment? Identify the genes and biology, not the children or the mentality.
Helen English, Children's Home of Wyoming Conference	I think genetic testing is the most important. I know too many families where a child is diagnosed and through that diagnosis a parent or relative also displays some of the dame behaviors.
Anonymous	It would be interesting to have research done on the similarities of Autism presentation in relatives. My cousin and I are both Autistic and it would be nice to know how much genetics plays a role in how similarly Autism presents in relatives. This would also be nice to know for when I have kids in the future.
Anonymous	Please do more work on genetic markers and preventing autism
Julie L Shaughnessy , Parent	Genetics primarily
Michael Walzer, The Hidden Gifts Project	There should be a study of parents, who have had an autistic child/children. After these children grow and get married, they have a child/children of their own, who are autistic, as well. There is something going on with the genes here. This is my story. Both my parents had my brother and l, who are Aspergers and my wife and l had two children, who are Aspergers, too. Something hereditary is happening. This needs to be checked out.

Pregnancy and Birth: More research is needed on how maternal health and activities, including medical procedures during pregnancy and after birth, may contribute to autism.

Respondent	Response
Harold M. ""Hal"" Frost, III, Ph.D., Retired from the University of California (USA); Life Senior member of IEEE	Much more physics- and math-based research on ASD etiology is needed to study the physics of the interactions of unusual environmental radiation factors with the biology of ASD, the factor of routine prenatal ultrasound being selected here for illustration purposes. (This response to Question #3 thus complements my response to question #2.) How this plays out has already been studied.* That is, mechanical radiation of ultrasound producing a physical effect at microscopic to nanoscopic size scales (e.g., residual solid-state shear stress or residual solid-state shear strain) can then produce both immediate and delayed effects in the biology of the single eukaryotic cell that then evolve unobserved over times of years to create changes and even adverse outcomes at macroscopic size scale (e.g., whole organs like the brain or the whole organism, e.g., child), as in behavior and learning in early childhood. * E.g., H. M. Frost (2021). TOWARDS A GOLD STANDARD FRAMEWORK FOR MODELING THE PHYSICAL ACTION OF MEDICAL DIAGNOSTIC ULTRASOUND. June 16. Pro bono white paper, 164pp. Abstract or FT of an earlier, less complete version of this treatise is at or via: https://www.ultrasound-autism.org/?p=701. For a 2015 online version of author's CV (10 pp.), go to: https://www.ars.usda.gov/ARSUserFiles/3559/Halcv.pdf. For full text of white paper (164 pp.) & of a 2021 CV (16 pp.), inquire by e-mail (halfrost@charter.net).
Marie Cullom	A better knowledge of potential risk factors like stress with the mother or postpartum depression. How do these factors effect child’s potential of developing Autism?
Anonymous	What genes are linked to autism and to which characteristics? Can birth trauma lead to the expression of some of these genetic dispositions? What about stress and panic disorders, etc, in the pregnant mother?
Eileen Nicole Simon, conradsimon.org	“The inferior colliculus is clearly the most metabolically active structure in the brain” Louis Sokoloff reported in 1981 (J. Cerebral Bloodflow), Metabolism in the brain has been measured by many researchers using Sokoloff's method. Tables of data provided in these reports all confirm that metabolism is higher in the inferior colliculi than anywhere else in the brain. WF Windle reported damage of the inferior colliculi in monkeys subjected to 6 to 8 minutes of asphyxia at birth (Scientific American, October 1969). Clamping the umbilical cord immediately after birth became standard practice in the mid 1980s. Autism became epidemic soon after, in the 1990s. Use of a clamp on the umbilical cord must be stopped. In the medical literature, loss of the ability to understand language has been described in many reports following injury of the inferior colliculi.
Anonymous	I know my wife took what would be considered an excess amount of folic acid. Excess folic acid causes UnMetabolized Folic Acid (UMFA) in the blood. I believe this, as well the genetic predisposition, is what contributed to my daughter’s ASD diagnosis. The UL for folic acid is set at 1mg. The most popular prenatal vitamins contain 800mcg of folic acid. Taking a prenatal and eating a bowl of Special K cereal has a woman over UL at breakfast. As intake increases above UL, the risk of adverse effects increases. Either the UL for folic acid needs to be increased or steps should be taken to prevent the significant excess of FA someone will take by taking a single prenatal and then following a normal diet in our fortified country. I think the UMFA is what triggers a Folate Receptor Auto-antibody response in ASD offspring, and this is tied to an ASD diagnosis. This can be prevented by finding out who is at risk for excess UMFA, maybe those with MTHFR polymorphisms, and using a different form of folate.
Annette Raia, Parent	More research is needed to determine the causes of autism. Also what leads to the spectrum of abilities and disabilities. What is the role of fertility treatments, i.e. IVF in autism? Do the fertility drugs effect embryos, etc.
Katherine Troyer, parent/guardian of adult with severe autism and severe intellectual disability	Need much more research into ""idiopathic"" autism. So much emphasis now on ""genetic"" causes, but we are not focusing much on the vast majority of cases. Look more closely at possible oxygen deprivation issues at birth; are we catching these cases? Are we providing brain ""cooling"" therapies to all newborns at risk of brain damage at birth? I am concerned that we are overlooking more ""subtle"" injuries to the brains of newborns that may worsen over time into varying degrees of autism severity.
Anonymous	Impact of prenatal drug exposure on children - more likely to have an ASD diagnosis? And is that because the mom is self medicating her autism with drugs (genetic link) or because of the drug exposure itself?
Anonymous	We don't know yet but believe it's hormonal in utero, much like gender. Hence the overlap between ASD and queer orientations. No one knows yet, but something causes our brains to develop with more overall connections
Parrish Nelson Hirasaki	There is suddenly an opportunity to conduct an epidemiological study of fetal ultrasound, the major change in prenatal care in the 2000s. The pandemic caused an interruption in prenatal care that has produced a population of babies who were not scanned in the first trimester and later. IAAC should request NIH to have a research grant for such a study. The FDA's designee American Institute of Ultrasound in Medicine (AIUM) formally states on its website that no study has been conducted since the allowable intensity was increased (8-fold) in 1992. The increase in the prenatal exposure to ultrasound and the increase in ASD follow similar curves. The lack of a large population of children who were not scanned has made this study impossible. If ultrasound has altered the migration of brain cells during the first half of gestation, it is likely a matter of timing and exposure. Laboratory research has proven a poor way to evaluate the effects which may be from precise timing or poor equipment or lax practices. It is important that NIH take this opportunity to evaluate and maybe vindicate prenatal ultrasound.
Somer, Autistic	My non-professional opinion is that early trauma (in utero as well as first year of post birth) can enhance autism. Study adoptees.

Society: Research is needed on how the social environment, social determinants of health, and society as a whole shapes the autistic experience and may cause undue hardships and difficulties.

Respondent	Response
Yvonne Federowicz	The Social Model of Disability is often not considered in too much research and policy-making. Assumptions, for instance, that preference for loud, gregarious workplaces, constant eye contact, and other ""normal"" social setups are anything more than a majority preference as compared with a ""healthy, normal"" environment, could be challenged and many feel should be.
Sally Smith	I believe that we need to look at how societal structures cause autism to be much more disabling. How can we change so that autistic people are not having to act in ways that are unnatural to them.
Anonymous	Disabling aspects can be abated with increased availability of services!
Katlyn	MANY of the disabling aspects of ASD can be prevented. Depression and anxiety can be prevented if the people in the education system, parents, and wider society are more educated about the spectrum of experience and stop judging and bullying autistic people. Stop forcing people who feel uncomfortable making eye contact to make eye contact. Stop enforcing that people sit a certain way, walk a certain way, talk a certain way, etc. And overall we need Education on the regulatory role of stimming; a lot of depression and burnout can be avoided if autistic people are actually allowed to freely stim without getting chastised or punished.
Mollie	The disabling aspects of ASD are a disability rights issue. The research must be done at a societal and systems level, not by ostracizing Autistic ways of being.
Anonymous	Society makes itself incomparable with autistic people. This is a disabling aspect of society. Society can change it laws, rulers, money, and what it values. It can view it's members as intrinsically valuable rather than instrumentally valuable. It can better provide for people's needs and use people's abilities.
Teresa Olafson	Research into the Polyvagal Theory (social/environmental), language sensory development and social determinates of health (epigenetics and mircobiome).
Shannon Borg, autistic parent to autistic children	I do not think this is important. I do not think we need to know risk factors because I don 't think it matters. It is just a different way of relating to society. Its not wrong its just different. Its like trying to find genetic markers for skin color its not helpful to autistic people. The society and how it is built is the disabling aspect for autistics. Everything is built for a different type of people neurotypicals. We need to research how to change personal environments to make them adapted to the needs of autistics so they aren't disabled.
Laura	The disabling aspects of autism are generally caused by neurotypical people. Please listen to us when we tell you this. You keep looking for ways to change us when the problem is neurotypical people and neurotypical systems. Where is the money for supporting us instead of getting rid of us or making us more convenient? Why doesn't my doctor know anything about autism?
Anonymous	It's important to understand how various treatments and therapies, accommodations, and also just the general way that the person is treated by the people around them, can impact how disabling ASD can be, not just early in life but also throughout the lifetime of the individual, so that people with ASD can have the highest quality of life possible.
Aerienne Amadis-Noel Fey, Autistic (ASD 2)	Please refer to the social model of disability.
Anonymous	A key area of research into preventing disabling aspects of autism would be around societal factors. For example: How can public environments be designed to be inclusive of individuals of all neurotypes, to avoid building more public spaces that are disabling for autistic individuals? Or, how can all educational environments be designed to be supportive of learners of all neurotypes, rather than being specifically tailored to neurotypical students?
carol staszewski	Caution re assumptions re traits that are problematic because they're non-dominant in a loveless culture (business model) vs problematic because the trait itself creates suffering or harm for the individual.
Anonymous	The disabling aspects of ASD requiring immediate attention are raising public awareness and training law enforcement.
Christina	I'm a bit unclear about what you mean by ""disabling aspects"" as I'm only ""disabled"" based on the society around me and their need for everyone to conform and produce capitalistic value to be considered inherently worthy of life.
Sarah Longstaff	It's not about ""prevention,"" it's about accommodation. Just like wheelchair ramps, autistic people have a right, under the ADA, to have our needs accommodated. But most important, DO QUALITATIVE, OPEN-ENDED INTERVIEWS WITH AUTISTIC PEOPLE. Gather up some anthropologists. This is what we DO. Research must be COLLABORATIVE.
Aishah	3. The aspects of ASD that affect each person on the spectrum are different and different things can be considered as disabling for different people. I do not think that these things can be stopped or abolished completely in a person just because this is a nurodevelopmental condition that’s with you from the time you’re born. But in the sense of society yes there are some changes that can be made. As a university student I know that if I had it the accommodations that I know I need for myself without the disability services office dictating what I canning can’t have for my disability would make my life a lot easier. And this is just one example.
Bek	Many of the most disabling aspects of being autistic are caused by society’s failure to understand and respond to what an autistic person is attempting to communicate. Such communication breakdowns frequently lead to the worst forms of discrimination and outcomes, including lifelong isolation, illiteracy, poor health, abuse, violence, and death.
Rachel Zanoni	Many of the most disabling aspects of being autistic are caused by society’s failure to understand and respond to what an autistic person is attempting to communicate. Such communication breakdowns frequently lead to the worst forms of discrimination and outcomes, including lifelong isolation, illiteracy, poor health, abuse, violence, and death.
Anonymous	Many of the most disabling aspects of being autistic are caused by society’s failure to understand and respond to what an autistic person is attempting to communicate. Such communication breakdowns frequently lead to the worst forms of discrimination and outcomes, including lifelong isolation, illiteracy, poor health, abuse, violence, and death.
Anonymous	Study the ways in which autism is more or less disabling depending on societal views and support systems.
Sandra McClennen	Many of the most disabling aspects of being autistic are caused by society’s failure to understand and respond to what an autistic person is attempting to communicate. Such communication breakdowns frequently lead to the worst forms of discrimination and outcomes, including lifelong isolation, illiteracy, poor health, abuse, violence, and death.
Nina	Many of the most disabling aspects of being autistic are caused by society’s failure to understand and respond to what an autistic person is attempting to communicate. Such communication breakdowns frequently lead to the worst forms of discrimination and outcomes, including lifelong isolation, illiteracy, poor health, abuse, violence, and death.
CommunicationFIRST	Many of the most disabling aspects of being autistic are caused by society’s failure to comprehend and respond to what an autistic person is attempting to communicate. Such communication breakdowns frequently lead to the most egregious forms of discrimination and outcomes, including lifelong isolation, illiteracy, poor health, abuse, violence, and death. The federal government must make certain that nonspeaking autistic children and adults have access to robust, language-based augmentative and alternative communication (AAC) tools and supports required for effective communication throughout their lifetimes. The Secretaries of Education and HHS and the Attorney General should develop and carry out a national strategy to achieve these aims by July 26, 2030, the 40th anniversary of the Americans with Disabilities Act. Specific emphasis must be placed on identifying the barriers, biases, and disparities that autistic Black, Indigenous, and People of Color and their families face when attempting to obtain robust, language-based AAC.
Tiffany Glass	Our son has a dual diagnosis of Down syndrome and autism, and for people with this diagnosis is is assumed that Trisomy 21 causes ASD. Our family's experience has been that the most disabling aspects of ASD result from systemic ableism and other discrimination, not from biological sources. Our lived experience aligns with CommunicationFirst's position: "" Many of the most disabling aspects of being autistic are caused by society’s failure to understand and respond to what an autistic person is attempting to communicate. Such communication breakdowns frequently lead to the worst forms of discrimination and outcomes, including lifelong isolation, illiteracy, poor health, abuse, violence, and death. The federal government must make certain that nonspeaking autistic children and adults have access to robust, language-based augmentative and alternative communication (AAC) tools and supports required for effective communication throughout their lifetimes. The Secretaries of Education and HHS and the Attorney General should develop and carry out a national strategy to achieve these aims. Specific emphasis must be placed on identifying the barriers, bias, and disparities that autistic people of color and their families face when attempting to obtain robust, language-based AAC. ""
Elizabeth Duffy, MS-OTR/L, Minnesota Neurodivergent Education Advocacy and Therapy Services	ASD is a neurodevelopmental, genetic disposition. Preventing ASD would require abortion, and most Autistic people say their lives are worth living. Instead of trying to ""prevent"" ASD, more attention should be focused on supports and services that allow Autistic individuals to live the authentic lives of their choosing. Less focus on the medical model of disability and more focus on the social model of disability can greatly improve the stigma that is associated with ASD towards a more hopeful future. Again, involving Autistic Advocates in deciding how to support them is lacking in our current services, and lived experience is incredibly valid and a vital part of evidenced based practice.

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

Respondent	Response
Michelle Williams	ALL the above. My son’s autism severely effects him. He will need to be taken care of his entire life. If research could figure out how to unlock his speech, or allow him to Wright, or figure out safety skills….that would increase his chances of being independent.
Zahida Chebchoub	genetic and environmental risk factors. policy issues.
Raliat M. Bello	More research needs to be done on ASD.
Parent	This is something that would be good to for parents to know and learn. Research into family history/genetics and ASD would be helpful. As in whether or not ASD can be inherited from a parent? Does the risk factor run in families. Also is there a correlation with vaccines or preterm labor medication?
Anonymous	There is never enough effort, time or money put into researching the causes of ASD and most importantly, the elephant in the room goes unmentioned. How about researching a cure as we do for other childhood afflictions such as diabetes, cancer etc.
Breanna Geary	I know much research has been poured into the cause of autism. The age old question of is it genetic or environmental has yet to be answered. That should be the priority.
Angel Holladay	This could be huge if used to help diagnose earlier and have better tools to help.
Rebeka Edge, Behavior Matters	If it is a learning disability, then more intensive therapies (ABA, Speech, OT) and better educational services. If it is a mental health disorder than more intensive therapies (ABA & mental health counseling, TMS). If it is caused by environmental issues then we need better access to specialized care (nutritionist, ETC)
Anonymous	All are extremely important!
Angela W.	Finding the correct information for a correct diagnosis would be helpful to the next generation and a refresher course for the veteran generation, like myself
Jennifer Dapkins	Yes what is the cause??? Genetics, environmental factors, pollutants, vaccine injury, trauma
Anonymous	All. Incidence of autism appears to be increasing and identifying modifiable risk factors is important.
Matthew. Lawrence LeFluer, Vermont. Family. Network/. Special Olympics Vermont	I. Don't. Know. If. This. Suggestion. Is. Known. In. My. State. Of. Vermont. I. Agree with. All. Of. Above. Information. For. Transparency
Dani Sellmer	There is a clear lack of research and understanig of what may causwe ASD. Often parents are left wondering if an event lead to ASD in their child. There are not enough research studies conducted to attempt to link genetic or environmental factors to diagnosis.
Anonymous	genetics and environmental risk factors
Anonymous	Any research focused on the root cause of ASD to determine if it's genetic, environmental, or something related to the gestational period and exposures.
Cheryl	This question might be to complicated for me to give a educated answer. Let’s start with what causes autism? Why do we still not know? Why do we offer very little medical help for these children. I know Duke University has been doing studies on cord blood with autism with positive results for years now. How much longer does these individuals that suffer everyday have to wait. My child is 13 and nothing has changed in 13 years. We still do not know what causes autism. Why a child is perfectly normal than everything goes away even their speech. Again all of it is important. Nothing can be prevented if we don’t know what causes autism. Is it GI issues? Is it environmental? I had my son which is severely autistic and non verbal genetically tested and they didn’t find anything wrong with him. Figure out what causes autism. The longer the medical field takes on figuring out what causes autism the more children/adults will be forced into institutions.
Sherrie Kinard, Parent of 2 Spectrum Children	Genetic and environmental risk factors.
Nancy Kearney, Parent adult autistic man in Massachusetts	All of the above important to prevent autism.
Anonymous	Very important topics! All of these should be studied - genetic and environmental risk factors, gene-environment interactions, epigenetics, individual risk factors such as the microbiome. More research into environmental triggers.
Catherine Cornell	All of the above areas as they relate to severe autism.
Deepti	Yes
Korri Ward, parent, science teacher, local advocate	We need to know what causes autism.
Gene Bensinger, Parent and Guardian	It is important to recognize that the disabling aspects of autism are, so some degree, both subjective and situational. Research priorities should continue to focus on causation and the wide range of impacts and let ethically guided individual and consensus views steer the application of this essential knowledge.
Sonja Miller, Parent	All of the above should be considered equally when trying to determine the cause.
Adrienne Benjamin	Again, very important topics to consider and learn more about. As I said above, please include people with Level 3 Autism.
Michael J. Borr, Chair, Advocates for Autism of Massachusetts	AFAM endorses Obj. 1-3 of the 2016/17 Strategic Plan to explore (i) genetic risk and resilience factors for ASD across the full diversity and heterogeneity of those with ASD, (ii) individual and multiple exposures in early development, and (iii) how multiple environmental and genetic risk and resilience factors interact through specific biological mechanisms to manifest in ASD phenotypes.

Question Area Not a Priority: This Question topic should not be a priority in the update of the Strategic Plan.

Respondent	Response
Anonymous	Genetic research should focus upon genetic reengineering to improve the quality of life for Autistic people rather than in promoting abortion/eugenics. For the first three questions my answer is simply NO, this is eugenics.
Jennifer Degner, Early childhood special education teacher	I believe the causes are multifaceted and are being researched. There are too many myths out there still and “cure” statements. We need to talk about how certain evidenced research based strategies such as ABA can help remediate certain self harm, negative aspects or behaviors of individuals with autism and with accommodations, modifications and other strategies they can be very successful. I think women and men need to have information shared before starting families about autism risk factors.. age of parents, other considerations etc. as a starting point. This is another campaign. Are parents making healthy choices to best prepare their bodies for expanding their family? Why are there clusters in certain states etc..?
Orla Putnam, University of North Carolina at Chapel Hill	These topics were not identified as very important to the autistic adults and parents of autistic children that I interviewed recently. The vast majority of research funding currently goes toward genetic research, which isn't helpful to addressing the needs of autistic people. Some people were interested in understanding the genetic basis of GI issues, sleep issues, and things like anxiety and depression.
Anonymous	we need to understand the biology of autism before we can find effective treatment, understand risk factors
Jossette Bailey, UNC Chapel Hill	I think a reconsideration of what part of ASD is ""disabling"" would be helpful, and these resources would be better used to helping people who are autistic rather than trying to find out why they are autistic. I know I'm speaking from a place of privilege but I do consider autism to be disabling, even my own and even if it's not visible/audible to others.
Anonymous	I have a hard time thinking that fetus-me was welcome news. The idea of never having been born is a bit of a relief, and that is almost certainly due in no small part to the disabling aspects of autism that are seldom accommodated. I think a lot about how my mom, a gene therapy researcher, would have felt had she known in the early 90s that I was going to be autistic. Ultimately, I don't know how I feel about the prevention of autism--it is, in many respects, who I am and have always been, for better and for worse. I believe that neurodiversity should be celebrated, and I think a lot of the ""disabling aspects"" could be circumvented with appropriate accommodations. As it is, our society rewards those who are the best equipped to contribute to capitalism, and I don't think it should fall upon autistic people to find ways to navigate that. Most of us would, if we could, and do, if we can, but it's not usually sustainable without some kind of eventual burnout. I think that most ""treatments"" of autism are just attempts to train out socially undesirable behaviors and motivate individuals to mask their symptoms, which also leads to eventual burnout. I suppose I am not that interested in prevention because I don't believe autism will be eradicated--don't really like the idea of that as a goal, in any case--and because I think we have a responsibility to the autistic people who are already here to build a society that accommodates them.
Kaitlynn Lyra Smith, Unaffiliated Autistic Adult	I am personally disturbed by the amount of funding that has previously been devoted to this topic. When individuals with ASD are estimated to exceed 1% of the population the focus on preventing or preempting subjectively disabling conditions reeks of eugenics.
AutisticallyReal, Actually Autistic Advocate	See response to Question 2. I will not re-type it.
T. A. Meridian McDonald, Vanderbilt University Medical Center	We need less focus on eugenics related (cure, prevention, treatment) of autism and more neurodiversity research on the etiology of multiple pathways and naturally occurring developmental pathways, processes, and milestones of autism(s). We need more research on the socially-valuable strengths of autism- what causes them and how can we better support them. We need to be developing early child curriculum that is appropriate to the developmental pathways of autistic children who may be ready for nonverbal science curriculum long before they are ready for social/communication instruction. We also need research on how to increase tolerance and acceptance of people with autistic preferences, interests, and mannerisms. We should be focusing more on the development of autistic strengths that support autistic excellence and we should stop our eugenics aims regarding the prevention or conversion of autistics. We should not all the occurrence of co-occurring intellectual and other disabilities to serve as evidence of the lack of value of autistic people.
Anonymous	As I said previously, autistic people are autistic because of who they are - their genetic makeup, their family. We should not be prevented. The very idea is deeply offensive and hurtful. I'm astonished you would even ask this question. With adequate support and understanding we have the same potential as living happy and fulfilling lives as anyone else. Me, my family and my closest dearest friends are all autistic and the idea that you would want us dead or to never exist makes me sadder than words can say.
Anonymous	Really? Let’s focus on adults with autism. Please be clear in delineating level 3 . This is opportunity to educate on different autism levels.
Anonymous	Seriously how is this even a question for ASD…$ that pretty much answers itself.
Anonymous	I don't believe we need to know the causes for ASD. Parents will go to immoral lengths to prevent ASD that may harm themselves, the child and other Autistic children. Policymakers may potentially put forth policies to endanger Autistic children or adults due to the causes, or place blame on parents. Genetic diversity that causes no harm to society at large, must be left alone. Instead, Autistic people are harmed by the neurotypical societies of this earth. Autistic individuals are the minority and need to be protected. I don't understand 'Can Disabling Aspects of ASD be prevented' exactly, but I can only propose that individuals of any age be properly screened for Autism, self-report self-induced injuries/behaviors and determine if they are Autistic and guided to less self-harming behaviors with the utmost, positive, affirming support.
Laurence Cobbaert , University of New South Wales (Australia)	The causes of autism are of very low priority to autistic people. We want more research using a participatory framework that focuses on how to improve our quality of life.
Anonymous	This is not a priority area of research. But research and policy in this domain should focus on the harm caused to the Autistic community by framing autism as something to be prevented, or some kind of tragedy.
Anonymous	I cannot emphasize strongly enough how much we DO NOT need genetic or causative research on ASD. It provides no assistance for autistic people and serves as an open invitation for the likes of Cure Autism Now to advocate for eugenics.
Anonymous	I think causation can be a rabbit hole for parents such as myself and from what Ive read the answer may be the interaction of various factors so Im not optimistic that we will find the answer anytime soon. I am not sure that prevention should be a focus at all, since prevention, to me, smells a bit of eugenics. I think money would be better spent in providing services and supports to people with autism so they can lead a full and rich and, as much as is practicable, an independent life.
Anonymous	The idea of ""preventing/preempting"" even the disabling aspects is uncomfortably vague, because who gets to decide what defines a disability? I'm not comfortable with that approach to research, as it leans dangerously close to eugenics. Because ASD folk are almost always abused by family and friends in some way, at some point, it is important for the public to understand that ASD doesn't have a specific ""look,"" and to spread knowledge that destigmatizes ASD in the general public.
Anonymous	Please stop trying to find a genetic cause for autism. There is no such thing as has been shown over and over and over again. So mich money and resources are wasted. Please instead spend this money and these resources on accommodating and supporting autistic people.
self-advocate	ASD is a processing difference. We need to stop trying to prevent it and start funding programs and services that help autistic people live their best lives.
Laurie George	Please be aware that the adult autistic community is not keen on diving too deep into the genetics of autism. The mindset is, we are autistic and proud of it. Autism is seen as one of many neurodiversities and they would prefer to see money spent on educating NON autistics on how to accept people that aren't just like them. As a mother to an autistic son who is verbal, if my child was unable to speak.. yes, I would want to know why and what I could do. But as a mother to an autistic son who will grow into an adult, I want society, and employers to understand his immense value and contribution to those around him.
Cyndi Kirby	I think the more important question is how do we support autistic individuals and stop treating it like a disease.
Anonymous	Most articles relating to this feel like fear mongering and guilt inducing- especially towards parents. Focus on funding and creating opportunities for children, adults and their families. Autism doesn't seem to be going anywhere, those living with the disorder need to be well supported and given resources to thrive.
Danielle Witt	I feel that it’s less important to focus on preventing autism, their brain was born like that…My son has autism and after I had my daughter from birth I could tell a difference between them and my daughter doesn’t have autism. We should focus on policies for these people to succeed because the waiver wait list is way too long on average about ten years for adults with asd.
Cyndi Stephenson	What causes ASD doesn't matter. It's how autistic people are treated that matters.
Lisa Schott, parent and caregiver	Frankly, all of the research money should be spent on identifying educational, vocational and residential strategies that actually work and improve the lives of those living with autism and IDD period. Our federal and state governments are woefully lacking in these areas as are private organizations.
Anonymous	ASD is a developmental disability and it cannot be prevented or cured. Therapy also is ineffective in treating Autism.
Nicole Shelton, AdvocacySD	You cannot preempt or prevent autism so this is a really stupid question
Lisbeth Little	I believe firmly that answers to mitigating some of the behaviors, symptoms, and health care concerns will be found in epigenetics and that it should be a priority, but please don't forget that parents and children with ASD need help now with everyday lives, people centered life planning, educational supports, in home supports- those can't wait.
Julie Francois	This is NOT a priority. ASD is not caused by all the things main stream media and facebook tout. It's most likely genetic. Let's focus any research areas there.
Florencia Ardon	This is an area where money should not be invested.
Anonymous	I do not believe that any of this research is designed to help autistic people who are here today, so this should not be a priority.
Jill Goldstein	There needs to be equal focus on macro research for future generations and more urgent micro research to help all the people with different types of autism challenged right now
Anonymous	There is no direct cause. We should not be looking for a cause or a cure. we should be looking to foster abilities instead.
Anthony J Thompson	No
Edythe Koerber , Mother	As I mentioned before I don't believe these are the priorities for our family.
Eleanor Wildflower	Attempts to prevent autism amount to genocide. IACC's time would be better spent in building a society where autism is not disabling (for example, by normalizing autism and making it easier to get accommodations).
Frank Easton	I wouldn't worry about the cause, too much digging in that area will result in abortions to prevent us from existing.
Michael Gerard Walzer, thehiddengiftsproject.com	This is a dangerous area we are entering. Eugenics in the wrong hands, like Autism Speaks want to eradicate our tribe. My autistic brothers and sisters, who are very disabled by their autism, do require special attention. The wear and tear on the parents and caregivers take a tremendous toll on the family. While there should never be a cure for autism, we do need to find a way to help those , who are experiencing the worst effects of autism. We need to have guidelines, if we decide to alter or adjust their autism. A list of do’s and don’t’s to protect our people from those organizations (Autism Speaks for example) who think we should be cured. I do not know of any autistics, who want a cure, period. This includes Temple Grandin, John Elder Robison, and Steve and Silberman. A discussion needs to address the issues and possibilities before we commit to anything.
Autistic Self Advocate and current PhD student in Disability Studies	This is not important because even with good intentions it will only further the eugenics movement.
Anonymous	I think this question is inappropriate, because the disabling aspects are often socio-cultural. This question is very medical model. I think epigenetics and the microbiome is important, but we need to be thinking about prevention in terms of societal issues, not the person.
Star Ford, Divergent Labs	This area should be eliminated from funding because it is already known that it is genetic and affected by culture and social opportunities. The main reason some people want to pursue this area of research is to facilitate abortions based on genetic tests, which is not a reason that should rise to the level of public funding.
Elizabeth Bartmess	How to address disabling aspects of ASD through early accommodations, early treatment for physiological factors like Ehlers Danlos Syndrome, abuse prevention, and effective identification of and psychotherapy for complex PTSD.
Justin Pimentel	As the years go on and the percentage of the general population that gets diagnosed with autism goes higher and higher, trying to identify the cause of ASD becomes progressively less worthwhile in the fight to improve the lives of autistic people. Focusing on less invasive ways to minimize the harmful or disabling aspects in autism is a much more worthwhile point of focus.
Isabella Blake	Many autistic people do not wish to be cured. We believe in the theory of neurodiversity, which states that autism is not a disorder, but an example of normal variation among human beings, and this variation is benefit rather than a detriment to society. Again, I would like to see quality of life research instead of “cure” research.
Helen Leung	I think that it's more important to ask what we can do to make Autistic lives better. Efforts to preventing a neurodivergence would likely lead to the eradication of Autistic people altogether.
Brittany Diane Daniels	As an autistic woman myself, I don't want and need for my autism to be cured completely.
Anonymous	As an Autistic person, I feel that more research focussing on supports for Autistic children and adults would be more helpful than trying to work out the causes behind Autism. I am also strongly opposed to trying to “prevent” Autism.
Anonymous	Throw out all research that's trying to prevent us from being born and focus your policies on not making life ridiculously miserable for those who are already born
Ren Koloni	As an autistic person, an advocate, and a disability scholar, I feel very strongly that research on ""cause,"" ""cure,"" and ""prevention"" come from eugenic and ableist sources and fuel eugenic and ableist goals. Disabling aspects of autism come from ableism: from intense stress and trauma caused by ableism, or from a lack of access to support or appropriate assistive technology. I add my voice to the many autistic voices that call for an end to causal research.
Sarah Zate, TTUHSC El Paso	This is eugenics, nicely worded. It presumes neurotypical as the gold standard and autism as disordered. It is gravely offensive.
Sandra Lee, Autistic adult	Before any further genetic research is performed, researchers need to better understand what autism actually is. Autism is not a set of behaviors. The behaviors you see are not ""autism""; they are only outward manifestations of our inner differences and experiences. Unfortunately, this fact is often completely ignored by researchers (and ""therapists""). Studying mice, worms, etc., that display what non-autistic people think of as ""autistic behaviors"" is useless and, frankly, insulting. So long as the behaviorist deficit model is predominant in the thinking of researchers, no good can come of the research.
Nicholas Elizabeth Faby	Do not research which genes cause autism. This may result in autistic fetuses being aborted, as now occurs with Downs syndrome.
Autistic Self Advocacy Network	ASAN believes that preventing or “preempting” autism is inherently unethical and an unacceptable use of federal funds. As stated in the DD Act, disability is a natural part of the human experience. Autistic people have the right to exist as we are. Research into the causation of autism has historically been intertwined with the quest for a “cure,” although a cure is not desired by autistic people ourselves. This quest has led to an industry shilling sham cures for autism, often at great physical harm to autistic children. Rephrasing this question to “prevention or preemption” does not change these underlying ethical realities. In 2017, research into the genetic and environmental factors for autism accounted for 22% ($81.1 million) of all funding for ASD research, and 19% ($74.3 million) in 2018. Nearly all of this funding went to research into the genetic causes of autism. This is an extraordinary amount of money to allocate towards research that not only fails to improve the lives of autistic people, but is actively seen as harmful by many in our community. We believe this money would be better spent on understanding autism across the lifespan, expanding access to services, and reducing the negative impacts of co-occurring physical and mental health conditions for which autistic people actually desire prevention and treatment.
Christina Krasovich, Collaboration of Autism Society Affiliates in Wisconsin	Knowing that the roots of autism have complex genetic and epigenetic features that lead to their phenotype, it may take a great deal of time and money to identify the genetic markers for the ASD diagnosis. As such, it is important that research conducted in this area be funded separately from other efforts so that it does not reduce in any way the monies available to those living with or impacted by autism today. Focusing efforts on the most challenging/disabling aspects of autism (speech limitations, self-harm, elopement) along with comorbidities and/or features of autism that endanger/decrease life expectancy for autistic individuals (suicidality, anxiety, depression, epilepsy) is advisable. Causality is less a priority than supporting the needs and interests of the autistic population.
Anonymous	Every possible research question under this category is purely eugenics and has no benefit to any autistic people, including autistic people with communication support needs or who need other 24-7 support. This is a waste of the taxpayers' money.
Anonymous	I don't care about this. In fact studying this worries me a lot. And i don't think it's very helpful
Anna R Myers	I don't think this question is even one we need to look at. It leads the reader to believe that if they were to find out what causes autism they would start to try to eliminate autism. And that is not what the autistic community wants, that is not what I as an autistic person want.
Anonymous	Not important or relevant.
Lisa Jeanne Graf	Autism is largely genetic- please don’t waste time looking for causes. Please let autistic families be.
Shelley	None of these should be studied
Lisa Morgan, Lisa Morgan Consulting LLC	I'm not sure what causes ASD, but does it really matter? People are born with ASD, and it has many good aspects, even for non-verbal people.
GS, Autistic Person	As an autistic person, I believe that autistic people are people and that we should not be prevented from existing. I am saddened by the fact that I have to explicitly state this to a group that is ostensibly looking out for our interests, but here we are. Furthermore, as an autistic person, I cannot help but be aware of the ways in which this kind of research can misinterpreted by caregivers who are desperate for a ""cure"" for their autistic family members and used as the basis of dubious ""therapies"" by unscrupulous companies that prey upon these peoples' fears. In other words, folks really, really seem to want to feed us bleach and sadly, it only takes one mention of the microbiome in a (usually small, poorly designed) study to give them ""permission"" as it were. Finally, as an autistic parent of autistic children, I urge you to consider how this research -- particularly research in the areas of genetic and environmental factors -- could potentially lead to the increased policing and criminalizing of pregnancy outcomes for all parents of autistic children, a trend that is already underway in this nation.
Michelle Cheney	The science of prevention has failed. Too much money and resources are being poured into the epigenetics of autism which is preventing the more important science of understanding how the brain interprets information and how to develop and/or innovate services and education for autists as well as how to emphasize and help them capitalize on their unique brilliance. There is too much science and not enough service in services for autistic children and their families, and what science exists is not being appropriated to influence systemic change in educating professionals so that they can facilitate the development of systems within systems that are appropriate for autists. Autists are not neuro-typicals with a ""glitch."" The science that exists to understand autism such as Theory of Mind and the Sally-Anne Test does not flow into the service or educational sectors where autistic children, youth, adults, and their families will spend a lifetime trying to obtain as much help and as many skills as possible.
Alicia Munson, The Arc Minnesota	Science supports the notion that Autism is genetic. It may be heritable (inherited) or de novo (individual genetic mutation). Upwards of 90% of people have a heritable form of genetic mutation that results in their particular Autism genetic code. (https://pubmed.ncbi.nlm.nih.gov/15121991/) Rather than directing funding toward biological causes of Autism, we believe investments should be made in campaigns - designed by and with Autistic people - to address the misinformation around causes of ASD, especially in relation to vaccines.
Anonymous	There needs to be less focus on finding the genetic ""cause"" of Autism and more on supporting individuals and their families and helping them meet their needs. The goal is not to identify and eliminate the cause of Autism, but to increase support and inclusion for autistics. Again, I do not think the eradication or ""curing"" of autism is the goal. If we are going to focus on ""prevention"" of disabling aspects of ASD, let's focus on increasing community support and infrastructure to allow autistics to live more independently in their communities and reduce their need to enter institutions.
Levi Miller	As I said in the previous question, there is no ""cause"" for ASD as it is the way someone is. It doesn't matter what kind of environment you live in or what kind of genetics the parents have. There is data that shows that there is not much of a difference in the rates and pretty much anyone can have a child with ASD.
Skylar	It would be greatly damaging to try and figure out the genetic causes of autism. Autism is not a bad thing, and finding the cause would lead to genocide, much like what is currently happening to the Down Syndrome community. This is a very bad and very cruel idea. Finding the “cause” will end up with a society that is free of autistic people. We can already see this happening with Down Syndrome, and this is just genocide at that point. Most autistic people do not want a “cure”, and trying to provide one for some people will end up with it being forced upon everyone
Anonymous	But honestly, research into causes and prevention is not a priority area for me. I think research dollars should first be allocated to projects that look for ways to improve the often deplorable living conditions, poor health outcomes, and short life expectancies of autistic people. Our short life expectancy isn't caused by an ""autism gene."" Many autistic people who die young commit suicide, and they do so because the circumstances of day-to-day life as an autistic person are often painful, dehumanizing, and eventually intolerable. And this is often not because of what is happening in our bodies and brains, but because of how we are treated by other people. Normally I'm enthusiastic about hard science for the sake of hard science, but scarce funding is better spent on finding ways to help autistic people who are currently alive stay that way.
Anonymous	Can disabling aspects be prevented? Yes with adequate support. Put more research into what supports are needed in schools, workplaces, etc.

Miscellaneous: Response addresses other topics not listed above.

Respondent	Response
jean publiee	fire anthony fauci. hire american researchers only who grew up in america. we dont know if we are gettnig the maximum results from the staff we have or american allegiance. when a sick person comes, examine that person and stop alleging that the person is making it up and its all the persons fault that autism has resulted. we have a substantial body of parents and kids now who are in epidemic, and wen eed to start a trial of no vaccines and see how healthy the kids are. the ones i see who resist vaccines are l00%. you are sloppy in safety.negligent in safety.
Jessica Van Schaick	The title of the question is throwing me off. When you say disabling aspects, I immediately think of the behaviors that can be very severe and are disabling. Self-injurious behavior, sleep disturbances, aggression, lack of attending, elopement, etc are all massive and often times dangerous and disabling aspects of ASD. I think those should be highlighted here or the title of the question clarified. Also, I know that some members of the committee expressed concern over the use of ""prevented"" or ""preempted"" in the question. I do think it is important to address the severe forms of autism and that some of the symptoms do need to be prevented. The voices of the most affected are often not able to be heard. Their families would tell you, that there are symptoms that do need to be prevented and treated for the health and safety of the autistic individual and their families. I would encourage the committee to not shy away from addressing these uncomfortable topics. While I understand there are autistics and advocates that don't want language that indicates autism needs to be treated or prevented, there are others that desperately need public understanding of these symptoms and therefore policies/research to help address them.
Vanessa parrott	Policy issues
Anna	I think I already covered this in my last questions. Of course child development will be harmed when families are isolated and often exhausted from working too many jobs to get by, pollution, and food insecurity. Add onto it a lack of parental leave, expensive costs for low quality childcare, and we have most of the concerns in American society to this day. Disabled people are canaries in the coal mine for broader society, when we suffer it's a strong sign that something is really, really wrong.
Leona Schlesna	My Grandson has been through genetics testing twice without finding any cause for his problems. Although genetics is useful to some in order to rule out those problems.
Maryse Hile, Parent of adult child with ASD who receives services	This is a pretty broad question! Research should include studying families for evidence of earlier-onset Alzheimers. Efforts should be ramped up to find a medical test for ASD in order to dispense with the purely behavioral approach, which is particularly problematic in toddlers. A strong emphasis should be placed at home and in school on literacy. There are various methods - word-outlining, color-coding of high-interest words early on - that can help to develop at least basic reading skills even in those children who will always struggle and who may not be very verbal. Lifelong basic literacy provides a minimum of agency and independence, as well as mental challenge and recreational outlet. With regard to epigenetics, an urgent effort should be made now to learn as much as possible about the grandparents of adult living with autism. Apart from obvious issues such as Alzheimer's, questionnaires to family should attempt to learn (insofar as families are comfortable sharing) about grandparents' early experiences, environmental factors and disease conditions.
Carol Tatom, Autism Response Team	I think that research has come a long way in identifying genetic and environmental risk factors that are linked to ASD. The concern that I see in this currently is that the research is still very new and we have no clear definite answers on the cause or prevention of ASD. Many of the reports that come out create division in the autism communities instead of unity. Until we know for sure, research that is released to the public should be neutral and not biased so that communities and families can come together for a unified cause. We all want the same thing in the end. If the autism communities are divided into many groups because of research that offended or blamed parents for their child having autism, the research will not have continued support or funding and the support and funding is much needed to further advance the study of risk factors, environmental factors, and epigenetics that impact all of us.
Anonymous	There is so much misinformation in this area. I feel parents reach out for anything that can 'fix' their child in desperation.
Alexandra Hernandez	The most important would be being able to identify the cause and risk factors prior to pregnancy and then detecting it during pregnancy.
Allison	Autism is genetic. We don't know which genes cause it, and there may be so many genes involved that pre-implementation genetic diagnosis(PGID) is impossible. Therefore, we cannot prevent autism per se. What we can do is prevent conditions that often co-occur with autism (e.g. intellectual disability, epilepsy, some mental illnesses, and Tourette's Syndrome). Since these comorbid conditions are often more disabling than autism itself, I believe trying to prevent them is a worthwhile pursuit.
Anonymous	Healthcare providers pharmaceutical, medical and nursing professiinals must undergo genetic anomaly training and treatments. Such mandatory training needs to be updated at least annually.
Natalie Crum, Rancher Toads	Abortion will stop the abuse and anti vaxxers
karen barrett, barrett consulting	failure to identify ACES
Council of Autism Service Providers	Question 3: What Causes ASD, and Can Disabling Aspects of ASD be Prevented or Preempted? (Topic: Risk Factors) Some of the disabling aspects of ASD can be prevented or preempted when children are provided meaningful access to early intervention. In its January 2020 Publication “Identification, Evaluation, and Management of Children With Autism Spectrum Disorder” the American Academy of Pediatrics states: Clinicians should respond appropriately to family or clinical concerns and results of screening to avoid delays in diagnosis and treatment. Intervention for the communicative, adaptive, and behavioral deficits associated with ASD should take place as soon as the need becomes evident. Intervention is most effective if it is early, intense, and involves the family. Research has demonstrated that interventions using principles of behavioral intervention are associated with skill acquisition and improved outcomes. Citation Susan L. Hyman, Susan E. Levy, Scott M. Myers, COUNCIL ON CHILDREN WITH DISABILITIES, SECTION ON DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS, Identification, Evaluation, and Management of Children With Autism Spectrum Disorder. Pediatrics January 2020; 145 (1): e20193447. 10.1542/peds.2019-3447
Kim Musheno, Autism Society of America	We would further suggest that a much greater focus on the second part of Question 3. “Can Disabling Aspects of ASD be Prevented or Preempted” be applied to the children from underserved, racial and ethnic minorities, rural, and economically disadvantaged communities. Dr. Patel proposes that treatments and service delivery systems optimized for affluent families in western countries may not be appropriate and are almost certainly inappropriate for those who do not now enjoy such economic benefits. While his work focuses mainly on children in the poorest countries in the world, his essential themes are very relevant and they may call for a recalibration of efforts by the HHS agencies. This does not mean a second-class status for screening or identification or service delivery but rather an optimization of what we do to help persons with autism and their families and individuals from racial and ethnic minorities, economically disadvantaged groups and rural communities. We continue to need a better understanding of all the different types of ASD.
American Academy of Pediatrics	For this question, the AAP notes that a clearer definition of what “disabling aspects” of ASD are would help guide this discussion, so that these traits can be examined individually and in tandem with other conditions. For example, anxiety, depression, and lack of age-appropriate executive functioning skills could be considered disabling aspects of ASD along with lack of verbal and other communication skills. Alternatively, there could be tiered levels of disabling aspects based on severity. Relatedly, literature is rife with references to the secondary deficits of early autistic symptoms; for example: the child who becomes fully self-directed missing out on opportunities to learn from his/her environment (in addition to becoming more socially isolated). This child will appear to lose skills or not gain new skills. If we catch and diagnose these children early before the secondary deficits have accumulated and implement strategies to keep the child engaged, we could prevent ASD's secondary cognitive and language deficits. The Academy notes that the aspirational goal for this section, that the causes of ASD will be discovered and inform diagnosis, prognosis, and interventions and lead to prevention or preemption of the challenges and disabilities of ASD, can only be achieved through a robust increase in research surrounding all aspects of ASD. This should include research on whether certain interventions for ASD can increase the risk of mental health disorders for those receiving said interventions. The Academy would also like to emphasize that parent mediated intervention, where parents/caregivers are engaging a child with autism spectrum disorder and helping to match and raise their social communication skills, are effective and deserve more “real-world” evaluation. This includes evaluation of the feasibility, acceptability and usability of interventions in rural and underserved locations with little to no access to experts. The use of telehealth-based intervention and in-home supports may support increased access to intervention that can mitigate the development interfering behaviors and strengthen the self-efficacy of parents/caregivers to support their child.

Multiple Themes Addressed

Respondent	Response
Savannah W., Late in life, diagnosed autistic, woman, wife and mother.	We don’t know what causes autism, though current research is pointing to genetics. The “disabling aspects” of autism are largely due to living in an inaccessible world. We’re disabled because society has done a poor job of accommodating our differences. The co-occurring conditions that exist alongside autism like depression, anxiety, POTS, eating disorders, EDS, Dyslexia, ADHD, Alexthymia and insomnia, to name a few, are all conditions that add to the struggles we already face as autistic individuals. Researching the links would help us understand how these things connect and impact our day-to-day life. That being said, this is only as long as those who are experiencing the researched traits are being consulted with and heard. Autism should NEVER BE PREVENTED. You’re playing with fire, and are embarrassingly tome-deaf to believe otherwise. Do we not remember the Nazi eugenics approach? Start Googling all of the brilliant minds you’d be eradicating from society. Google all the ones that you’d consider the highest support needs too, then stand in front of all autists, and tell us that our existence should’ve been prevented, or that it needs curing. Tell us further that we’re nothing more than a undesirable flaw in humanity’s genetic coding. If that doesn’t stir something inside of you, go check your ableism at the door. If you plan to advocate for us however, don’t entertain any voice that isn’t autistic in the decision making that affects autistic people. Themes Addressed: Acceptance, Society
Anonymous	Environmental risk factors. The role of environmental and health risk factors on prenatal and postnatal brain development. Themes Addressed: Environment, Pregnancy and Birth
Heidi Parr, Case Manager, Seven Counties Services	Need for genetic testing to screen for autism markers Need for research for environmental factors affecting diagnosis (diet, etc - not vaccines) Themes Addressed: Environment, Genetics
Tonja Nolan, independent	The role of epigenetics and the microbiome are a high priority for reserach, policy issues and gaps. gene-environment intereactuions could be useful too, but hunting for genetic and environmental risk factors implies something wrong with the autistic when the 'wrong' pieces lie within the system itself. Themes Addressed: Acceptance, Gene-Environment, GI and Microbiome
Lisa Nieman, Parent	I would be interested in research on whether disabling aspects of ASD can be prevented by inclusive, accepting and non-punitive early education where behavior is seen as communication. I'd like to see if non-speaking children over age 2 or so receive unrestricted access to an AAC device, if it preempts more disabling conditions, and promotes mental health. I'd love to see more research on the microbiome - less to ""cure"" autism, and more to promote mental health for people diagnosed with ASD. Themes Addressed: GI and Microbiome, Society
Andrea Grover	Genetic research needs to be very carefully managed to reduce the risk of eugenics applications; we urgently need further research on the ethics of doing any genetic research on autistic people, and this research needs to ask autistic people (not their families or third parties) about their views on genetic research in particular. ""Disabling aspects"" also needs to be well defined based on the experiences of autistic people, with serious consideration of the social model of disability in setting these definitions. Research should therefore establish which disabling aspects autistic people consider to be inherent versus socially imposed, based solely on autistic experiences and not third party reports. Themes Addressed: Acceptance, Society
Anonymous	I believe that gene and environmental factors is a great place to focus on for research. Themes Addressed: Environment, Genetics
Alexis Oliver Williams	Genetic and environmental risk factors. Themes Addressed: Environment, Genetics
Jodi Pliszka, Neurolicity	Again there needs to be more studies about the gene environment interactions and the environmental risks for young females. Themes Addressed: Environment, Gene-Environment
TP	Reducing carbon emissions ( which most likely create ASD in the fetus of a mother during pregnancy when she breathes in the polluted air)- which then leads to a life long disability in the child- studies have been done to show this is a contributing factor. Additionally restricting certain chemicals in things like shampoos or detergents that can also create ASD or hormonal imbalance or other forms of toxicity that are not as easy to detox- metals, glycerins etc. All of these things can contribute to strange neurological changes which lead to ASD becoming manifest. *Additionally preventing research that could lead to eugenics is also critical- that would be cutting off the legs of diversity in society and would ensure the end of the species and stifle innovation in the future. All genetic diversity has benefits even if it doesn't seem so on the surface...contributions are measured in different ways and people need to think deeper about the implications of that.... Themes Addressed: Acceptance, Environment
Avery, I'm autistic	The epigenetics thing sounds fascinating, but I think y'all need to adjust how you're framing this. ""Risk factors"" implies autism is a bad thing, or something that needs to be avoided. Themes Addressed: Acceptance, Gene-Environment
Sarah Conn, MS, OTR/L , CDPVTC	Research has shown that that chances of ASD increase with being the result of a birth from a mother of older age. I do not feel that we can necessarily prevent ASD, because I feel there is a genetic component, as well. I do think, however, there should be studies done of food and its additives to see if there is a link between the two. Themes Addressed: Environment, Pregnancy and Birth
Anonymous	- Researching and listening to the views of autistic people about which characteristics of autism feel disabling to us and which ones don't - Prioritizing the needs and well-being of people on the spectrum over the preferences/convenience of family members or care providers Themes Addressed: Acceptance, Society
Anonymous	While the disabled aspects of ASD (and ASD in general) cannot be prevented (and attempts to do so will have further long term harm), they can be accommodated (sensory needs can be accommodated with tools such as earplugs and stim toys). Attempting to prevent ASD is a harmful ideology because autism is not something to be cured, it is a natural variation of the human condition. Themes Addressed: Acceptance, Society
Dr. Andy Shih, Autism Speaks	Since a large proportion of autism risk is genetically based, we need greater investment in probing the underlying genetics and subsequent biological pathways. With a greater understanding of the pathways leading to ASD, we can target and intervene in processes that reduce the quality of life. However, as our definition of disability moved beyond a ‘disease mode’ to one that thinks of disability within a framework of functional limitations imposed by the environment, it is imperative that we strive for meaningful impact on wellbeing and outcome, as well as inclusion and participation of autistic individuals in family and community life. Indeed, the intention of United Nations Convention for Persons with Disability (UNCRPD) is clear that “the perception and reality of disability also depend on the technologies, assistance and services available, as well as on cultural considerations.” As with many complex disorders and disabilities, addressing social determinants can lead to improved quality of life and better outcomes. More research to better understand how environmental factors, broadly defined to include social determinants, can be targeted to enhance functioning, wellbeing and outcome will be both timely and welcomed. Themes Addressed: Genetics, Society
National Council on Severe Autism, National Council on Severe Autism	While autism is strongly heritable, studies consistently demonstrate that the DNA sequence only explains roughly 10-20% of cases, with most of that risk stemming from de novo mutations (calling into question a role for exogenous stressors), and not from ancestral factors. Further, genetic findings have failed to translate into any clinical benefit for patients, nor any approaches toward prevention. NCSA suggests that the NIH radically reduce funding of further research into DNA sequence. Instead, the NIH should switch its emphasis to locating *non-genetic sources of the heritable risk for autism*, including but not limited to epigenetic/transcriptional damage to parental gametes. A key example is modern general anesthesia (GA) which can alter molecular programming of parental germ cells at brain-related genes. *Every animal study conducted to date on this topic has linked germline exposure to GA to adverse neurodevelopmental impacts in some offspring, predominantly in males.* The Study to Explore Early Development (SEED), DoD-Army’s Autism Research Program (ARP) as well as the Center for Children’s Environmental Health (CCEH) at UC Davis should gather parental toxicant/medical procedure histories (including exposures to the parents when they were fetuses). Similarly, we need research on the sperm of fathers, as pilot studies have already revealed epigenetic markers consistent with autism risk. Mammalian models can be used as proxies in studies of oocytes. Themes Addressed: Environment, Gene-Environment
Autism Science Foundation	1. Genetic-environmental interaction. More interdisciplinary studies are needed on the interplay of genetic and environmental factors as they relate to ASD. While there is substantial evidence linking toxic environmental exposure and neurodevelopmental disorders, we need to prioritize research into the specific genetic-environmental interactions that are associated with ASD. Federal Agencies and foundations must expand research funding for studies that involve collaboration among disciplinary science teams to overcome existing research silos that impede our 2. Rare Genetic Variations. More research is needed into the genetic architecture of ASD, particularly regarding rare genetic variations. For example, research indicating that a potentially damaging single nucleotide variation (pdSNV) was associated with ASD individuals who shared comorbidities, birth characteristics, and gross motor delays (Satterstrom et al., 2020). Findings like these could lead to specially tailored treatment protocols and greater understanding of how to serve people with ASD who have a rare genetic profile. ASF supports the following priorities to address ASD risk factors: • Limiting toxic Environmental Exposure. Robust regulatory actions are needed to protect people from known or suspected developmental neurotoxins. Government regulatory agencies should not allow new chemicals to enter market unless they are tested for developmental neurotoxicity. Themes Addressed: Environment, Gene-Environment, Genetics
Anonymous	The wording of this question and the associated topic is problematic; talking about reducing ""risk factors"" assumes that these inherent ""aspects"" are negative and should be eliminated. It is crucial that policymakers, researchers, and the general public understand that the disabling aspects of ASD are essentially rooted in sociocultural factors. Ableism and stigma are risk factors that impact diagnosis and lead to a lack of accommodations in daily life (particularly when legally prescribed action is the only widely accepted method to access supports). The current lack of understanding must account for the lived experiences of autistic people (diagnosed as adults and as children), including both struggles and strengths. Autistic people already share this knowledge freely to support self-understanding. Research can and should focus on further examining this information and contrasting it with existing sociocultural beliefs. Themes Addressed: Acceptance, Society

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