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Question 2 Responses

What is the Biology Underlying ASD?

Topics from Responses to Question 2

Acceptance: Research on the biology of autism should be conducted with the goal of reducing disabling and negative effects of co-occurring conditions and improving the lives of autistic people, not to prevent or cure autism.

Respondent Response
Anonymous Researching the harm caused to the Autistic community by focusing research on causes of autism, and preventing autism.
Lori, Guardian and speech therapist This area has become more sensitive since there are many adults on the spectrum who do not want a cure to be found as they feel there differences are an asset and not something that needs to be eradicated. This parallels Deaf culture.
Isabella Blake Topics in autism research must shift towards the desires of actually autistic people. Autistic people overwhelmingly support quality of life research over “cure” research, which brings up eradication and eugenics concerns. Some quality of life research ideas are preventing autistic people from being victimized, autism acceptance in the world, mental health treatment for autistic people, supporting autistic people in using augmentative and alternative communication, community living and integration, and most importantly to me, the ethics and true effects of applied behavior analysis (Some autistic people who have been through ABA are claiming that this popular therapy is abusive).
Anonymous I generally am in favor of seeking scientific knowledge, but to what end? Is it to make autistic people take drugs and behave differently in order to assimilate? Or is it better to understand the irneeds and abilities?
Sandra Lee, Autistic adult We need research that focuses on helping autistic people and giving us the information and resources that we need, rather than on preventing our existence or ""fixing us"" by forcing us to ignore our discomfort and pretend to be something we're not.
Anonymous I am opposed to any genetic research that could be used to develop a prenatal autism test because it could be used for eugenics. The impact of universal prenatal Down syndrome testing in countries such as Iceland and Denmark has been selective termination of almost all pregnancies likely to result in the birth of a child with Down syndrome, and I don't want Autistic people eliminated from the population. For this reason, I am extremely wary of any research on a genetic cause of autism. However, that doesn't mean all biological research on autism is bad; for example, researching how Autistic people metabolize medications may be useful as our response to medications is often different from allistic people.
Julie L Shaughnessy , Parent Research and stigma associated with ASD
GS, Autistic Person As an autistic person, I believe that the research priorities in this area should focus on addressing the aspects of biology that contribute positively to the physical and mental health and overall well-being of actual autistic people rather than discovering new ways to screen for autism and prevent autistic people from existing, which appears to be the current goal of most, if not all, research in this area.
Jacqueline Ward I don't think research should be looking at ASD as a disorder. Let's take the ""D"" out of this diagnosis. Look at the cognitive strengths of many neuro-diverse autistics. If you start seeing this a genetic disorder, it can lead to early termination of a pregnancy. Think of the genius or creative mastermind that should be born. All the other topics stated here are not exclusive to autism and can be studied in their own research programs.

Co-occurring Conditions: More research is needed on common co-occurring physical and mental health conditions.

Respondent Response
Catherine Martell, autistic, health care provider co-occurring conditions. i have some learning disabilities and bipolar disorder. it seems that the frequency of non-binary gendered persons is high among autists. research on that issue would be useful. are we just less likely to follow stereotypes and do we inherit non-binary traits or both?
Michelle Williams More research into the Epilepsy/ASD connection.
Zahida Chebchoub co-occurring conditions in ASD.
Suzanne Rossi Co-occurring mental health issues are significantly lagging behind other ASD topics. This could be because most mental health issues are lagging behind other healthcare issues - and adding ASD into the mix makes it even more ignored. How to deal with volatile ASD patients when medication doesn't seem to work? Is it appropriate for them to be in typical mental hospital situations with neuro-typical mental health patients? (My daughter was sexually assaulted each time she was in a mental hospital)
Anonymous Cooccurring is particularly important as it historically related to greater severe behavior that is dangerous to the individual and family.
Jane Kontoff Co-occurring conditions in ASD.
Laurie George I would like there to be more research done in the area of co-occurring conditions, particularly in adult autistics.
Anonymous Co-occurring conditions such as anxiety, depression, OCD, and physical conditions (my son has Crohn's disease which is common in ASD.)
Breanna Geary I think co-occuring conditions should be a priority. Autistic individuals have a higher mortality rate than most, generally because they often can't tell someone if something is wrong with them. There should be more effort put into a medical screening process to identify potential comorbitities.
Anonymous We need to study the effects of traumatic births and any correlation with autism. Also we need to research the integration of primal reflexes and other issues concerning the nervous system. What is the link between Polyvagal theory and autism??? We need to learn more about the overlap between autism, ADHD, depression, anxiety, OCD and trauma. Pathological Demand Avoidance needs to be studied.
Jessica Easton Co-occurring conditions such as sleep deprivation and anxiety severely impact the ASD community. I believe addressing theses conditions would make the biggest impact.
Anonymous Treatments to obtain better quality of life (co-morbidities) research funding for genetic causation and potential pharmaceutical treatment. Funding and sharing sound scientific and evidence based treatments that can help individuals improve outcomes and quality of life
Angel Holladay I feel the co-occurring conditions are huge!! Comorbidity of other conditions is what most of our doctor visits are about. Most of our accommodations on his IEP is for other co-occurring conditions.
Anonymous Autism seems to run in families many parents of autistic children find out later in life that they too are autistic. Other conditions that can come with autism are EDS, Sensory processing disorder, anxiety, depression, ADD/ ADHD, Dyscalculia.
Peter Mazure, Parent; Chesterfield CSB Doctors and support professionals should be better trained in recognizing co-occurring conditions.
Suzi Hiatt, parent & service provider Capriccio Elite, LLC Co-occurring disorders
Jill Goldstein My son’s primary diagnosis is autism. Additionally, he has epilepsy, OCD and is IDD. Trying to treat all these conditions is an impossible game of wack-a-mo. Although preventative research is important, there must also be focus on improving the lives of those with autism
Dani Sellmer More research needs to be done on what may be the underlying cause. There are theories out there but not often is anything scientifically proven causing parents to have to guess on how to treat their child or use unconfirmed treatments. More research needs to be done on co-occurring conditions because often parents are unable to get those diagnosed.
Katie Vahey Gaebler, Parent and ASD consultant Co-occuring conditions, esp digestive and gut health, we're our earliest signs.
Frank Easton I wouldn't worry about the biology aside from the depression so many of us experience, it's a problem we have that results in us having a higher suicide rate than the neuroptypical population.
Star Ford, Divergent Labs The most important research area in underlying biology is studying trauma reactions and anxiety that is common in autistic people.
Elizabeth Bartmess The role of Ehlers Danlos Syndrome in ASD, and how to reduce physical symptoms and prevent future physical damage, for example by educational programs to help people with EDS reduce joint damage and by investigating why some people with EDS develop POTS and mast cell disorders and why some do not.
Justin Pimentel More research should be put into how the co-occurring conditions in ASD affect autistic people.
Helen Leung Co-occurring conditions and WHY they tend to co-occur. For example, we know anecdotally that Ehlers-Danlos Syndrome is common in Autistic people, but we don't know why.
Anonymous Is there a high rate of co morbidity or are they sign of autism. Are other conditions being confused for autism and vs versa.
Anonymous Understanding co-occurring conditions in Autism would be helpful for Autistic individuals given the number of Autistic people with co-occurring disabilities. For instance how anxiety disorders impact on Autistic individuals and how this may differ from non-Autistic individuals.
Anonymous It's important to study the various effects that ASD can have beyond the behavioral differences. People with ASD have higher rates of many seemingly unrelated illnesses, and it's important to understand why.
Anonymous Research needs to be conducted to address most effective ways to support autistic individuals with co-occurring mental health diagnoses, such as depression and anxiety.
Sarah Zate, TTUHSC El Paso Ehlers Danlos syndrome as a comorbidity
Sarah Longstaff As for genetic disorders, there is significant overlap between autism and connective tissues disorders, leading to POTS, migraines, gastroparesis, etc. Study into interoception is also vital. Parents complain about their child ""refusing"" to defecate on the toilet. If the child's connective tissue is too lax, and they can't feel the urge anyway--that's not ""refusal.""
Nicholas Elizabeth Faby Should prioritize learning about co-occuring conditions since these are very common anecdotally but need to be studied more
Aishah 2. I’m not sure I can be very helpful with this question. But there are a lot of conditions that cooccur with autism, some of those can be learning disabilities such as dyslexia or dyscalculia all the way to physical challenges such as hyper mobility.
Avery, I'm autistic Comorbidities
Anonymous Linked issues. Comorbidities. Conditions autistics should look out for for future.
Anonymous Separating ASD from other co-morbid conditions that can exist independently and not a result of ASD.
Lisa Jeanne Graf I think research for co occurring conditions can be helpful.
Aster A subject in this area that often goes unadressed is how autistic people tend to have higher rates of digestive disorders.
Shelley Co-occurring conditions. I want to know why we all have hyper mobile joints seemingly. The joint pain is awful
Damaris Ramos, Ron Davis Autism Foundation, Inc. I am not a doctor to speculate on the biology. As a neurodiverse individual I do see some similarities and co-occurring conditions like, dyslexia, ADHD, anxiety and depression.
Diana Autin/Lauren Agoratus, SPAN Parent Advocacy Network/Family Voices NJ In addition, examination of comorbid medical conditions, such as autoimmune or gastrointestinal indications, have been brought up at many IACC meetings during public comment, yet not addressed. In addition, seizure disorders correlate with autism and could be life-threatening.
Becky Rosenberg, Partners in Policymaking (Maryland) Co-Morbidities
Stacy L. Nonnemacher, Pennsylvania's Bureau of Supports for Autism & Special Populations In my experience, there is a dearth of empirical practices and interventions for autistic adults who present with a co-occurring mental health condition.
Skylar I think it would be helpful to know more about comorbid conditions, because it could help with both diagnosis and with creating programs
Anonymous What will improve the lives of autists the most is to understand related and co occurring conditions
Michael J. Borr, Chair, Advocates for Autism of Massachusetts AFAM endorses continuation of Objectives 1-3 of the 2016-17 Strategic Plan supporting research on (i) processes of early development, molecular and neurodevelopmental mechanisms, and brain circuitry, (ii) underlying biology of co-occurring conditions in ASD and their relationship to ASD, and (iii) large-scale longitudinal studies that can answer questions about the development of ASD across the lifespan. Attention to co-occurring physical and mental health conditions in ASD is needed to develop interventions across the lifespan to improve wellbeing. The ability of people with ASD, especially those with severe autism, to access healthcare otherwise routinely available to people without ASD desperately needs to be addressed—in primary care, EDs, inpatient settings, and dental offices. Lack of trained healthcare professionals is a barrier to treatment of co-occurring conditions frequently seen in people with ASD (e.g., anxiety, depression, epilepsy, sleep disorder, gastrointestinal disorders), health conditions experienced by most people at times in their life, and preventative care. Increased use of telehealth should be monitored as a tool to enhance care for and research about the health of people with ASD, while identifying potential limitations in and concerns its use presents for people with ASD. Inclusion of children and adults with severe autism in research should be a priority; they are so often not represented or underrepresented in research produced to date.

Cognitive and Behavioral Biology: More research is needed on the developmental biology and cognitive and behavioral aspects of autism.

Respondent Response
Jessica Van Schaick The behavioral aspects of autism seem to be undervalued in this section and question 3. Research to understand the more severe behaviors that can be associated with autism should be a major research focus.
Cindy Gutschke The most important research priorities should be in identifying the best protocols for in home parental and family intervention. So I would say cognitive and behavioral biology.
Sharon Montgomery, U.S. citizen Developmental biology.
Anonymous Cognitive and behavior biology as it is one of biggest impacts within the community and how they will live they’re lives and guardians to plan.
Michele Mann, ECD Connections Cognitive & Behavioral research is probably the best target for research. Anything that might provide insight on Best Practices for treatment should be where our resources go. As a pragmatist, I feel we should concentrate on the best treatment, supports and services.
Anonymous It would be interesting to see more research on the developmental patterns of Autism since we're all much better than neurotypical people at prioritizing long-term planning over instant gratification, thus implying that our frontal lobe develops better/sooner than neurotypical people. Also internal development is very strong, so when kids are developing socially, we're developing our sense of self, which likely leads to special interests and hyperfixations, along with a large number of Autistic people being transgender as well.
Adrienne Would like to see some research on the biological (or other) reasons that some kids develop language and some do not. Non-verbal people are underrepresented and misunderstood. Would like to see more innovative research into how to determine the real IQ of someone with extreme apraxia and no standard way to demonstrate what they know.
karen barrett, barrett consulting human cognition and instruction
Sarah Neuroscience as it relates to 1) cognitive and linguistic differences and 2) sensory input and processing.

Gender: More research is needed on the biology of sex differences and girls and women on the autism spectrum.

Respondent Response
Cyndi Kirby Recognizing female autistics
Danielle Witt I feel like genetic research gets in the way of helping because it opens the door for eugenics. I would like to see more about the differences between sexes of asd because a lot of girls go undiagnosed until later in life.
Cyndi Stephenson We don't know but something I have recognized through participation in many autism support groups is that we are more likely to be in the LGBTQ community and many autistic adults are trapped with guardians who will not allow these people to be open about their identity. We should address that.
Jodi Pliszka, Neurolicity That there's not enough funding for the sex differences in ASD. Females do not have enough research especially adult females. It's to be more education on the presenting factors of ASD in adult women.
Anonymous Try to figure out why people with so-called ""high-functioning"" autism tend to be gay women or non-binary/trans/gender non-conforming people, while those with more severe impact of disability tend to be men and boys.
Danielle Davis, N/A More research needs to be done on the female autism phenotype. Females manifest symptoms in different ways and are vastly underdiagnosed and misdiagnosed because the current autism traits are all based on years of research that has little external validity because it does not generalize to the rest of the population outside of white young males. FIX THIS

Genetics: More research is needed to understand genetic contributions to autism.

Respondent Response
Anonymous Some genetic disorders clearly have ASD as symptoms of the initial diagnosis - however the actual ASD has been overlooked reporting if the first diagnosis is found & then therapies for that child do not occur when most theraputic.
Sue Yacovissi, parent genetic disorders
Marie Cullom Standardized testing for ALL. Why do some children on the spectrum get genetic testing and others don’t. EVERYONE should get the same access to care to help generate more data to improve care. Better therapies that are individualized for each unique person.
Catherine Pinto, Parent There are multiple people in my family with autism. Genetics obviously play a role.
Wayne, Parent 1: More research in neuroscience and genetics, but also CRISPR gene DNA editing technology. 2: Incorporate the SPARK for Autism Genetic study going on right now and help expand it to all families with autism. 3: Conduct a real honest formal study into the correlation between certain childhood vaccine schedules and autism. None has been done yet and the panel should have professionals on both sides of the argument.
Anonymous Researching genes connected to ASD, why does it run in families? Why are males more identified than females? Why is the prevalence of ASD on the rise.
Elke Drayton There is a history of Autism in the Family. My husband first wife had Autism but since she was adopted and the records was sealed we found out later on that her mother had a mental illness and was in a facility. So his wife has it, her daughter has it, my son ( adopted grandson has it) my daughter struggled all her life with this until we found out that our son has Autism and put the puzzle pieces together.
Margie Williamson, The Arc of South Carolina More genetic funding to determine outcomes and treatment options at an earlier age.
Ryan More research is needed to better identify subgroups of the spectrum based on DNA and genetics. Better understanding of regularly occurring sub groups will lead to better supports More research is needed to more concretely and consistently identify what environmental exposures turn on and turn off genetic characteristics that would show as autistic traits
Anonymous When & how will prospective parents be prepared for genetic mutation potential in their newborn? When and how are healthcare providers trained to udentify and treat genetic mutations?

Immune System and Metabolism: More research is needed on immune and metabolic aspects of autism.

Respondent Response
Freda Dias Immune and metabolic aspects
Kirsten Johnson, Parent Immune and metabolic aspects.
Deborah Immune and metabolic health
Parent Focus on neuro immune dysfunction as likely source of ASD and seizure disorder resolution.
Mollie We need to know more about autistic health needs. How can we nourish autistic bodies and brains with diet, activity, and wellness strategies. How can we better care for Autistic people?
Teresa Olafson Chronic inflammatory response that impacts or impairs developing brain architecture resulting from chronic stress activation or allostatic load that results from neurodevelopmental or sensory integration deficits during infancy young childhood.
Anonymous Metabolic and immune issues are largely ignored.

Inclusion: Biological research on autism should be conducted in a culturally competent and sensitive manner and include autistic input and diverse racial, ethnic, and socioeconomic groups.

Respondent Response
Yvonne Federowicz Researchers in the ""hard sciences"" involved with autism need to be exposed to how their viewpoints have been molded by assumptions similar to ""scientific"" views on supposed racial and gender inferiority. It might shock very intelligent, well-meaning people that someone would respond to their lifelong dedicated work this way, but an enormous amount of damage to autistics is being done by the lack acceptance by the research community of autistics as fully human.
Kristen Herrett Personally, I feel the primary goal of biology research is for eugenics unless individuals with autism currently are directly involved in the ethical decisions regarding biological research into autism.
Anonymous The sciences regarding the study of Autistic people MUST be supported by those with Autism and MUST be involved in the study and MUST be majority authors of the study being executed. It is impossible to meet the needs of a community when the study is conducted by outsiders. They are unable to experience the life of an Autistic person because it is a neurological difference. One cannot simply decide for an Autistic person that they must stop their behavior in order to conform to society or feel more comfortable to be seen as 'normal'. I will only emphasize again, Autistic people must be involved in their own biology and if an autistic person chooses to be a scientist or scholar, they must have the support to achieve this to better the lives of their own community with their studies.
Hana Gabrielle, Wells Fargo I think that autistic researchers should be prioritized and uplifted and non-autistic researchers should not silence autistic researchers researching their own condition. Also, research in autism should primarily on the suicidality rate of autistic folks, especially if they're adults and teenagers. Have more research studies that focus on the intersectionality of autism, sexuality, and race. There are few research studies that focus on autistic and queer folks in addition to non-white autistic folks. Not to mention, I heard from autistic folks who had ABA therapy that it made them develop PTSD. I would also suggest focusing on the autistic population and recognizing the faulty criteria of autism and its overlap with other common conditions (e.g. ADHD, dyslexia, etc.).
Sonya Emerick Autistic researchers have been able to use their invaluable community connections to identify self-determined areas of research for and by the autistic community. Those should be funded priorities.
carol staszewski Just the concern of who defines which traits are problematic and why...dominant white cultural norms vs. appreciation for difference. What needs to change? Cultural response to varied ways of being and knowing or those who present in non-dominant ways. Again, need for voices of autistics to guide these decisions.
Anonymous Autism is caused by differences in the wiring of the brain (how the different regions of the brain are connected). While autism clearly has a genetic component (myself, my father, and my grandfather are all autistic), I do not believe efforts to find the gene(s) that cause autism are done in the best interest of the autistic community. The autistic community does not want a genetic screening or a cure. In research, it is essential that studies are reviewed by a diverse group of autistic individuals.

Molecular Biology and Neurobiology: More research is needed to better understand the molecular biology and neuroscience of autism and the biological basis of neurodiversity.

Respondent Response
Kathleen Neuroscience from a diversity perspective.
Margie Bruff, University of Colorado at Boulder Neurological causes of thinking differences, genetic markers
Anonymous more research is needed regarding the biology and etiology of autism. molecular and developmental biology should be a primary focus, since this could lead to effective treatment
Laurence Cobbaert , University of New South Wales (Australia) Research is showing the important role of thalamo-cortical connectivity in mental health, attention, learning, and cognition more broadly. Focusing on this neurobiological aspect would be useful.
Leona Schlesna Neuroscience!!!
Anonymous Molecular biology and neuroscience
Janay Use of more neuroscience technology to be able to exam the brain and how it differs from those of neurotypical children may play a part in the early diagnosis of ASD. The individuals with ASD have not only brains that differ, in addition, often struggle with how they see gender issues, how their bodies process differently, and often present similarly to other diagnosis. With the help of identifying genes or other biological differing aspects, diagnosis may become easier and detected earlier in life.
Katherine Troyer, parent/guardian of adult with severe autism and severe intellectual disability Research the brains of children and adults diagnosed with autism spectrum disorder, including those with ""severe"" autism and severe intellectual disability. How can we identify ""white matter"" irregularities, what do they mean for the individual's functioning, how do we ""treat""?
Tom Rickels, X-Excel (day services provider) The neuroscience.
Elissa Leonard What is the role of excessive folic acid masking and exacerbating maternal/child vitamin B12 Deficiency in Autism and neurodevelopmental problems? Do you know that folate and B12 have an important SHARED metabolism? We all know the Autism Epidemic is exactly timed with the addition of high dose synthetic folic acid to the womb. And that the Epidemic increased after mandatory folic acid fortification that no one can opt out of. Do you know that folic acid is not the best form of folate for all populations? Is it ethical to saturate the food supply with a pharmacologically-active form of synthetic folate not all people can well-tolerate? Why has it taken over 4 decades to look at the growing problem of excessive folic acid in the presence of low vitamin B12... which raises the toxic metabolites Homocysteine and Methylmalonic Acid... which causes neurodevelopmental problems on a spectrum from mild to severe? I'm sure you know the change in Autism demographics: The epidemic started with educated prosperous women who had medical care. Presumably they were following what they thought was good 1980s 1990s advice : taking high dose folic acid, avoiding meat and other animal-sourced foods for ""health"" reasons. Perhaps they had been taking hormonal birth control and other meds for years before deciding to have children. All these things can lead to masked B12 Deficiency, which no one checked their children for. B12 deficiency acquired by babies causes Brain Damage on a spectrum. We know prenatal vitamins now have more B12 then they did in the 80s and 90s. Lately, the epidemic is among other populations: Those people relying on lifelong cheap foods fortified with folic acid whether that is an appropriate folate for them or not. Perils of excessive folic acid:
Bill Raymond, Autism Advocate IACC should advance research to better understand the biology and neurodevelopmental mechanisms that contribute to the functional basis of ASD. Specifically, given that language is a construct of neurological structures and that aphasia stems from an inability to synthesize and integrate sensory and cognitive processes, IACC should further research to investigate the causal linkage and the role played by insufficient serotonin production as it relates to dietary deficiencies, reduced amino acid production and the consequent decline in pattern recognition and cognitive performance. IACC should advance research to identify effective interventions such as enzyme replacement therapy to measure and restore cognitive performance.
margaret bennett neuroscience
Gary Ames, Which neuro-imaging technology is best to detect aberations? Quantitative EEG, Diffusion Tensor Imaging, or another?
mother, guardian, and advocate Molecular biology and neuroscience is a huge priority. Especially looking at the different neurology present in schizophrenia or bi-polar compared to the episodes of emotional dysregulation in autism. Prescribing drugs for schizophrenia or bi-polar for kids with autism to cope with behaviors from emotional dysregulation is dangerous and unethical, yet common practice.
Cheryl Autism is a neurological disease. For years our medical field categorize it as a behavioral disorder which then translate to no one cares. Most important priority- figure out what causes autism and find a cure and force the insurance companies to cover it.
Jennifer Reppond, parent of ASD teenager / doctoral student MTHFR - is a big component of many people on the spectrum. Doctors need to not just push (and insurance companies need not just pay for) the ABA. There are many studies pointing to methylation issues that affect the way bodies absorb nutrients and expel toxins. When toxins make their way into the blood stream and ultimately break the brain/blood barrier - there is a lot of issues with upsetting brain signals. I think MTHFR defects need to be caught earlier (need to be caught period) - some mainstream doctors don't even know what that is - or what to do with the results of a positive test. Clean diets, not just the GF, DF craze - but true clean diets - proper supplements - overgrowth of candida yeast needs to be caught and put under control - the gut / brain axis needs to come out of the fringes into main stream knowledge and added as part of the treatments for autism.
Lisa Morgan, Lisa Morgan Consulting LLC A different brain in structure and functioning.
Dr. Andy Shih, Autism Speaks Since the causes of autism are varied, different biological mechanisms may be involved in different autistic individuals. To make therapies and services for autism truly effective, relevant biological pathways that are different in autistic individuals need to be identified and help inform solutions. We need to personalize healthcare, so supports and services can be targeted, based on an individual’s biological profile. Unfortunately, there is little to no profiling at the pathway level (i.e., multi-omic) being done in autistic individuals to understand this complex biology for precision medicine. We need to not only understand which processes are altered, but how these processes interact, and how they may evolve over time. Longitudinal, multi-omic profiling will be a critical way forward to build on the current genomics foundation and identify different types of autism which would allow therapies to be tailored appropriately.

Sensory: More research is needed on the biology of sensory and motor issues associated with autism.

Respondent Response
Anonymous Sensory processing is the biggest issue as it likely underlies everything else
Anonymous No ""cure"" for ASD is needed. What would be helpful is research into medications that can help relieve any uncomfortable symptoms, but not everyone with ASD has uncomfortable symptoms, so it is not some ""disease"" that needs to be cured. Physical sensory issues are a frequent factor of ASD, so research into better ergonomics for daily living- household objects, textiles, acoustics of buildings (offices, stores, residences), comfortable lighting, etc, would be excellent. Also, the idea of parents trying to ""engineer"" their unborn children to not be autistic is extremely offensive. Don't research that.
Trisha Gallagher, Public Special School Principal Research on the sensory impact of autism.

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
Chris Colter 1. Molecular 2. Immune and Metabolic aspects 3. Cognitive 4. Genetics We need to get to the underlying causes instead of treating the symptoms.
Raliat M. Bello More study needs to be done; still unsure what causes ASD.
Anonymous Genetics seems promising for early identification and to help set reasonable expectations. For practical reasons i think cognitive and behavioral science makes the most impact on families.
Stephanie Bridge, Parent Definitely more and more research needs to be done in this area. We participated in SPARK and were fortunate to find out that our son has a de novo mutation of the FOXP1 gene which led to his autism diagnosis--but he is now 21 years old. This information would likely have been much more helpful at a younger age! Still we are thankful for the information and the advances being made now.
Rebeka Edge, Behavior Matters No idea. As a parent I would love to know. Is it genetic? Environmental issue (Leaky gut, immunizations). , a learning disability (more brain research)
Hillis Wetterer The spectrum for autism is diverse. All research gives more insight into each individuals needs. More information is needed for parents. Presented in a format that is not medical and easily digested.
Jennifer Dapkins Cause and cure ABA is awful and does nothing
Matthew. Lawrence LeFluer, Vermont. Family. Network/. Special Olympics Vermont It's. A. Technology/ Medical term To. Suggestion. To. Treat. Adults and. Children with. Learning specialized. Needs. I Agree with All. Of. Above. Information.
Catherine Cornell All of the above areas as they relate to severe forms of autism.
April Morome, Autistic person I cannot consider only one of these to be kore important because it is all equally important.
Natalie Crum, Rancher Toads More important than 1
Anonymous All of these topics are important and should be prioritized. In addition, we must make people aware that ASD is primarily caused by biological factors and is NOT socially constructed.
Gene Bensinger, Parent and Guardian All of the areas of inquiry mentioned above are essential and should not be ranked. The ""constellation"" of autism spectrum disorders is comprised of clusters of individuals impacted by some or all of these biological issues.
Adrienne Benjamin Those are all important issues. Please remember to include the full spectrum in the research.
Carl I would like to see a concentration of research on all these areas.
Anonymous This is a complex question to answer. All aspects are important to get fullest picture possible of ASD: neuro- bio behavioral; different ASD etiologies & combination of factors that make real needs for child & parents.
Daysi Jimenez Entiendo que hay cambios biologicos en personas autistas y que ellos varias en cada persona. No hay genes o estudios especificos que indiquen una causa. Translation: I understand that there are biological changes in autistic people and that they vary in each person. There are no specific genes or studies that indicate a cause.
Paulina , Parent Es muy importante, y más importante es como llega esta información a las familias o las personas con autismo. Muchas familas obtienen el diagnóstico y nada más. No se les comunica ninguna información adicional. Translation: It is very important, and more important is how this information reaches families or people with autism. Many families get the diagnosis and nothing else. No additional information is communicated to them.

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

Respondent Response
Anonymous I would like to see significantly less focus on biology and risk factors and a lot more focus on all of the other factors.
Kaitlynn Lyra Smith, Unaffiliated Autistic Adult While it is helpful to identify common comorbid conditions and the understanding of biology may help identify potential treatment options the funding of biological research into autism in previous years has been far exceeded the benefit provided to living autistic individuals.
AutisticallyReal, Actually Autistic Advocate AUTISTIC PEOPLE DO NOT NEED A CURE. NOR DO WE WISH TO BE SUBJECT TO GENETIC GENOCIDE. AUTISTIC PEOPLE EXIST, WE ARE HERE, WE ARE YOUR COLLEAGUES, YOUR TEACHERS, YOUR SERVER AT THE RESTARUANT, AND WE DO IT MORE COURAGEASLY THAN YOU COULD EVER UNDERSTAND. Delving into ANYTHING that even Wafts like a stray scent on a summer's day that smells like cure based 'therapy' is an enormous waste of money that could be better spent on supports and training the ND community.
Anonymous We already know this. In addition to being autistic, I have a PhD in psychology research. The literature is pretty clear here, and being autistic has the same heritability rates as height. Just like how tall people more often than not have tall children, autistic people more often than not have autistic children. This doesn't need to be researched. We improve the wellbeing of gay people by finding their genes. We did this by accepting them for who they are. The only thing you can do by finding our genes is to prevent us from ever existing. Hopefully I don't need to tell you that this is eugenics. Additionally, the absurd amount of money spent on this research could be better spent on supporting autistic people. So many of us face workplace discrimination, schoolyard bullying, mental health problems as a result of this and often don't get access to the care and accommodations we need. Knowing our biology isn't helping us getting employed. Increased understanding and acceptance does.
Anonymous People with autism are so different. This study area Would not result in any useful information. Don’t waste money on this. More dollars need to be spent on adults
Anonymous This area of research is a lower priority compared to directly intervening with individuals through screenings, assessments, interventions and the importance of lifespan focus.
Anonymous Biology is natural. We need to stop looking at autism as a disease and a disorder, and only as a natural variation and disability. Neurodiversity matters, and while genetics do play a factor, autistic people here don’t want a cure. Majority of us don’t. The fact that there are some folks out there who still don’t take autistic voices as the authority over their lived experiences, we don’t want a cure and don’t need one.
Peggy Wargelin, Parent with 18-year-old child with Asperger's diagnosis I'm not very interested in this. Please don't spend much money on this!
Anna It's a normal variation of the human genome, or a symptom of deeper issues like economic inequalities and environmental racism. Children who are food insecure are not going to be able to develop according to what is typical because their bodies lack the nutrients to be able to adequately function. Environmental factors do play a role and this is where corporate accountability for pollution should be required, but the lore in autistic culture that it's genetic and should not be changed or researched for valid fears of a repetition or continuation of eugenicist practices is strong. Neurdodivergent traits caused by underlying diseases isn't Neurodiversity, that's disease to me. However, autistic is an identity, not a disease, and the conflation between neurodivergence and being diseased needs to stop. I did get tested for the MTHFR gene for fun and turns out I'm a carrier so of course I'll try and prevent my kid from having a disease that is a threat to fundamental homeostasis which is why it's a disease, while disability is not a threat to homeostasis but just a natural difference that needs to be loved and respected.
Nicole Shelton, AdvocacySD This has very low priority in my opinion compared to the amazing differences between populations, and disability groups that you are ignoring in this pole.
Julie Francois I do not think this should be a focus. Support should be given to those who need it, I do not think a priority should be placed on the why.
A.K. Research priorities should be focused on strategies to support novel interventions and access to communities who are not able to access much needed and evidence based intervention. I do not support advocating for genetics based research in ASD as this holds the very possible potential to identify ASD prenatally and subsequent termination of pregnancy which is often not highlighted in conversations around genetics. Conversations supporting genetics in research are often focused on early diagnosis and intervention yet we cannot even accommodate the children who are being diagnosed based on symptoms and signs.
Florencia Ardon This is an area I believe money should NOT be wasted on.
Lisa Important but less important than questions #6, 7, 5
Edythe Koerber , Mother I feel that all of these are important issues but don't know that this is more important or helping them learn to live comfortably in the present day world is more important.
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 What is the reason for identifying biology underlying ASD? To remove those factors from the population? Seems very eugenic.
Tosha ASD is a wide range of diverse things. It is, first and foremost, a brain structure with extra grey matter. Some would say a developmental disorder, or a disability. But it is simply a benevolent neurotype. One that makes the outside world more enhanced -and frequently- the bearer more sensitive to tactile and auditory stimuli. It can be genetic, through brain damage, or other causes. It can occur next to many co-morbidities such as Adhd, Tourettes, Ocd, and many others. At times, it also influences ones inner most gender identity, such as being trans, asexual, or gay. We are more likely to have mysterious autoimmune disorders, and mentally and physically process food differently. We have higher rates of eating disorders because of this. Research around autism should not be focused towards biology however, and should be more focused on helping autistic people through these hurdles they encounter with their own perception and bodies; and making growing up as easy and seamless as possible. Not in changing who we are by nature. But by teaching us to coexist and adapt to our surroundings.
Shannon Borg, autistic parent to autistic children This is not important! how will this improve the lives of autistics? If finding out what is the underlying biology is only used to prevent autistics from being born then it shouldn't be researched. We don't need to eradicate autism.
Laura This is not a priority. The priority is supporting the autistic people who already exist, regardless of why we are autistic. I can't access jobs that match my talents. My life sucks. Because I can't get the support I need to make a living and contribute my skills.
Anonymous There is very little genetic difference between issac newton and someone who is not issac newton. There is very little genetic difference between a chimpanzee and a human being. In fact ASD communication system has been recently shown to be superior to same in NT, so this should be identified by secular government as Micho Kaku does regarding future of mind book and genetic code of ASD. And not deemed to be handicap. This needs PR work and public awareness.
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. While co-occuring conditions may need to be researched, those co-occuring conditions do not *only* occur with ASD, and therefore are their own line of research.
Anonymous Stop researching this. This information will be used for eugenics. It does not improve autistic lives.
Sandra McClennen I consider this area much less important than working to provide alternative communication (AAC) to those who need it and providing societal supports so that all autistics can have a good life.
Julie Grant I know much has been done, but how is that shaping our research treatment priorities?
Nina The biology of autism isn't nearly as important as the discrimination in society (especially in medicine and education) against autistic people. Do something to change this and fight for acceptance and inclusion and autistic people will lead much better lives.
Anonymous Instead of wasting research funding on the biology and causes of ASD (which does nothing to help those of us already living), why are are you not funding programs that could improve our quality of life or allow us to participate more fully in society?(For example, by creating hiring initiatives that would allow us to become gainfully employed, or shedding light on the very real sensory differences we experience which make accessing the current healthcare system detrimental to our well-being). Why are we not considered valid as we are and allowed to exist as autistics? I'm a late diagnosed autistic adult ASD ""Level 2"". I wouldn't change my autism if given the choice, but I sure would change how little help I am given to navigate a world in which if accommodations were made we ALL would benefit. I had great things to offer, I had unique perspective and creativity and honest earnestness. I was not rewarded. I was left abused, traumatized, chronically ill and now am on SSDI. (I was a hyperlexic, 2E (twice exceptional) ""gifted"" kid.) My giftedness was recognized but my ASD, ADHD, dyscalculia and Ehlers Danlos Syndrome were not recognized until way too late. I went on to develop GAD, panic disorder, emetophobia which is really just sensory related and was being driven by autism the whole time since age 6, cPTSD, DPDR, RSD, Fibromyalgia, TMJD, dysphagia, LPR, IBS-C and agaoraphobia. I'm afraid of interacting with people because they misunderstand/mismotivate me/assign subtext I do not have and expect me to communicate in an NT way when I absolutely do not. The onus is always always on the autist - why is that? No one bothers to learn our communication styles. Our language. Our reasons. We are treated as if it is not valid, and that is heartbreaking ...along with being plain wrong.
Michelle Cheney 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. 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.
Tiffany Glass Ableism and racism in the research infrastructure is the single most catastrophic shortfall in research culture, priorities, policy, and gaps. Our son is often denied access to the AAC supports and services he needs for communication, and his consequent inability to communicate becomes interpreted as intellectual disability and other disorders. Since this purported ID results from ableism, and is in fact a social construct, research related in intellectual disability in this population which assumes biological cause is doomed to failure. The current waste of limited research resources due to this issue is catastrophic.
Amber Allen I would rather prioritize the minimizing of the disabilities of children
Levi Miller This isn't really the right way to ask this question for several reasons. First of all, ASD is genetic. However, I see it as well as related disorders as being more of a genetic trait much like race and sexuality. In simple terms, it is just the way some people are and that is why neurodiversity is the more proper term for recognizing people who have neurological differences. For certain genetic and behavioral conditions, ASD and related disorders do not necessarily cause these conditions. I would say they are issues that are common with this community. Sensory Processing Disorders are an example but that is actually a different disorder than ASD.

Miscellaneous: Response addresses other topics not listed above.

Respondent Response
Harold M. ""Hal"" Frost, III, Ph.D., Retired from the University of California (USA); Life Senior member of IEEE The biology of ASD needs to be better understood at the microscopic and nanoscopic size scales, in terms of the mechanics and dynamics of protein folding and mis-folding, as of the secondary and tertiary structure of DNA in the nucleolus and nucleus of the eukaryotic cell, when abnormal environmental factors are present (to affect gene expression), one of which, prenatal ultrasound, is dealt with in my response to question #3. Technology is now emerging to take in vivo movies of such processes, via liquid-cell electron microscopy and tomography being developed in the Huck Institute at Penn State. Equilibrium and non-equlibirum molecular dynamics simulations, plus analytic calculations, are now available to model such processes.
jean publiee go back to the beginning when the first vaccine was used and do safety studies now because a ""bill of goods"" has been foisted upon the american public to take this [redacted] and we know every body you inject into is different and will take the vaccine differently. andyou are proposing hundreds of more vaccines, how much can a human body take> what is the maximum. you seem to be going ahead with no realizatoin that vaccine after vaccine can work agains health in the human body.
Stefanie Lombardo, Parent. Guardian. Caregiver. Advocate. I would like to see research assign a greater priority to those with the lowest amount of independent functioning within the spectrum (those who have limited communication, self care, and self advocacy skills)
VIRAJ D. VYAS, PSW, CHW, Job Coach, A volunteer Advocacy Ambassador for Autism Speaks. Biology Underlying ASD: 1)Genetic disorders related to ASD. MTHFR genes and deficiency of folate, B-12, choline. A child may have problem with methylation. 2) Immune and metabolic aspects. Family history of Auto-immune problems. A child may have lower immunity and allergies.
Chiara Jaffe, Parent of a 14-year-old with Down Syndrome & Autism Down Syndrome is the most common genetic disorder. Therefore, it is important that research funding be allocated for studying Down Syndrome and ASD.
Eileen Nicole Simon, Language is the defining feature of the human species. Delay or irregularity of language learning must be looked for. Infants recite stressed syllables when they begin to speak (see Roger Brown 1975). Use of whole phrases is an ominous sign, & indicates failure to detect syllable boundaries. Efforts should be made to teach syllable components of speech if this normal stage of language development does not occur naturally.
Kevin, Legal Reform for the Intellectually and Developmentally Disabled (LRIDD) Nobody understands what causes Autism. The regular 'treatment' has been to tell and order that individual to act in a certain way or to conduct themselves in a manner equivalent to and according to the neurotypical fashion, being that exhibited by those who sustain a traditional living in the United States (buying/renting a home, vehicle, and holding a job). I have seen nobody transform a Autistic individual into somebody whom society would deem as fully neurotypical (such as a high school or college football player). Yet, the courts believe that if they continue terrorizing, harassing, and making the lives of an Autistic individual harder by taking thousands of hard earned dollars from them and sending them to jail or prison, they will make that transformation. Autism is linked to their neurological disorder which is common among every Autistic person. That disorder can be alleviated through physical therapy and physical rehabilitation and conditioning. Only through this difficult process would they have the ability to live suitable and sustainable independent lives.
William Ash I think the heterogeneity of autism needs to be addressed. Is there one autism or several autisms? What are the cognitive differences in the population. In my case, I have very different needs and abilities to someone that is level 2 or 3. Autism research tends to bin autistic subjects as if they are somehow universally representative of the population. I think there needs to be more research into addressing these differences to make more effective interventions.
Maryse Hile, Parent of adult child with ASD who receives services It might be valuable to begin a serious exploration of family history with regard to Alzheimer's Disease, particularly earlier-onset pattern. Given that some evidence suggests certain similarities between the brain changes that characterize AD and those that exist in ASD, it could be potentially significant for our general understanding of both to conduct longitudinal studies in families with above-average incidence of both AD and ASD.
Jenell I haven’t come across any doctors that have specifically told me to look into biomed. I came across it doing my own research. Doctors just gave me the autism protocol… ABA, speech therapy and OT therapy. That’s a huge regret I have, finding it so late. Our son is five years old and there is no age cap on progress; however, I would have started with biomed had I known that was an option. We are all bio individuals it makes complete sense that we all need/lack different things.
Pamela Foster Dr. Richard Frye at Phoenix Children's Hospital has done extensive research on underlying causes of ASD. He is very hard to see as there is an extensive wait list. His testing and treatment protocols need to be expanded and access for every child on the spectrum to be evaluated. There needs to be assessment and evaluation that goes beyond behaviors - there should be a standard of care when a child is diagnosed that includes this extensive workup. Too many opportunities to treat are lost because no one is looking. Young children's brains are at critical stages of development and they can be helped if the cause is determined early.
Josh Compton In addition to supporting research in all of these areas, we must also increase efforts to improve science/health communication about this research and its findings. We know too well the dangers of poor research and poor communication about research—including the persistence, destructive myths about vaccinations and autism. Medical researchers should partner with social scientists and communication researchers to insure that messaging is accurate, clear, and robust against mis- and disinformation.
Anthony J Thompson Tipping point is Mercury in shots
Anonymous Mismatched personality traits (e.g. extraversion)
Anonymous More research and treatment for people with severe autism needs to be targeted. These are the people who desperately need treatment and prevention or cures.
konjoo lee Brain-body control system tuning
Kim Musheno, Autism Society of America While the topics of the biology and the cause of autism are very important, the fact that these closely related topics garner their own top-level priority in federal attention is of concern. Extensive funding over many years has brought great progress. We would urge that these two priorities be combined for the purposes of IACC consideration and that a broader reanalysis of overall federal resources devoted to both topics be undertaken.
Sonja Miller, Parent All of the above topics should be expanded to not just include babies or young children. It should be continued as they become adults and co-occurring diagnosis could produce later in life.

Multiple Themes Addressed

Respondent Response
Anonymous Research needs to be balanced out to remove the bias toward preventing Autism and seeing Autistic folks as a disease or disorder to be cured rather than human beings. Research needs to acknowledge the Anti-Semitism of Autism diagnoses that disproportionately labels Jews as Autistic. Further, research needs to be done that examines the cross-cultural nature of ""Autism"" as it is usually never proven medically or scientifically but is socially constructed by fixating on things like ""eye contact"" that are subjective and Western mannerisms that would be considered rude in other cultures. For the first three questions my answer is simply NO, this is eugenics. Themes Addressed: Acceptance, Inclusion
Lisa Wiederlight Immune and metabolic aspecdts, and co-occurring conditions in ASD are the least-funded of what was given in the question, but the most important. We have not found the ""genetic"" cause of the unexplained increase in autism over the past decades. Fund research into the environment plus genes connection--it isn't one or the other. Two co-occurring conditions, suicide and seizures--are the reason for the majority of the increased mortality in the autism community. To not address this urgently would be a travesty. You need research to get in the hands of practitioners. Maybe research how that is done most effectively from other diseases and disorders, too. Themes Addressed: Co-occurring Conditions, Immune System and Metabolism
Jennifer Degner, Early childhood special education teacher I continue to see a huge need for research in areas related to girls and women’s presentation of characteristics. They are still very close Nader represented. Genetics, immune and metabolic aspects need to be explored as well. The co- morbidities of conditions and masking elements need to be further identified and defined in lay person language. As a teacher, I don’t know the technical aspects but I regularly see students with gut issues, severe food intake issues(only wanting to eat white food, or only eating 7-10 food items and only certain brands of chicken nuggets. I see the negative presentation of effects as they reach preschool age and the struggles parents have daily in providing nutrition to their children and sleep dysfunction and dysregulation of sleeping patterns. The research about the brain changes needs to be shared out. I don’t know these aspects of biology but I would love more information. Themes Addressed: Co-occurring Conditions, Gender, Genetics, Immune System and Metabolism
Orla Putnam, University of North Carolina at Chapel Hill I think that sex differences, immune and metabolic aspects, and co-occurring conditions in ASD are important to study as they are helpful to people who have been diagnosed with autism in their daily life. I do not think that this question should take up the bulk of funding priorities though, and many autistic people I have interviewed expressed fear of eugenics and harmful treatments when discussing biology. Themes Addressed: Acceptance, Co-occurring Conditions, Gender, Immune System and Metabolism
Jossette Bailey, UNC Chapel Hill Sex differences - I said before recognizing differences in autism between boys and girls. Co-occurring conditions - such as digestive issues, other possible health issues that are related. Themes Addressed: Co-occurring Conditions, Gender
Anonymous Immune and metabolic aspects, co-occuring conditions, and genetic disorders are the most important to research. It could cut down on misdiagnoses in people with ASD, and hopefully improve medical care in general for us. Themes Addressed: Co-occurring Conditions, Genetics, Immune System and Metabolism
T. A. Meridian McDonald, Vanderbilt University Medical Center We need less focus on eugenics-related biological research (cause, cure, prevention, and treatment of autism) and more neurodiversity focused biological research. We need to better understand how assortative mating on socially-valued traits of autism (e.g., sustained attention, semantic memory, object orientation, nonconformity, systemizing, and sensory/perceptual differences) can lead to the increased frequency and intensity of these traits in offspring. We need to better understand how these traits can interact with the vast range of co-occurring conditions to create multiple developmental pathways. We need to understand the natural developmental timing and processes across multiple autism pathways so that we can better support development toward autistic excellence (strengths and social value of autism). Our research on the biology of autism needs to also focus on the treatment of co-occurring conditions. This includes adapting and/or developing interventions suited for autistic needs (cognition, transportation, emotion, sensory, etc). For example, we need more research addressing insomnia, cardiovascular disease, diabetes, obesity. This research is NOT being funded for cognitively-able autistic adults because of major gaps in NIH funding priorities. Further, the NIH views autism as a ""primary disease"" and not as a ""marginalized group"" that experiences disparities in physical health and healthcare. Themes Addressed: Acceptance, Co-occurring Conditions, Molecular Biology and Neurobiology
Ronni Blumenthal, Phelan-McDermid Syndrome Foundation Genetic disorders related to ASD, as well as immune and metabolic aspects. Themes Addressed: Genetics, Immune System and Metabolism
Anonymous Do not collect DNA insecurely/with no clear statement around how the data will be used short and long term. Implying a cure for autism is reasonable or wanted can be harmful. Learn from other bungled projects like spectrum10k. Data sets with only or mostly male identified or white participants. Themes Addressed: Acceptance, Inclusion
Sally Smith Research to find better diagnostic tools and not to find a cure. research into co-occurring conditions. Themes Addressed: Acceptance, Co-occurring Conditions
Anonymous - Co-occurring conditions, most notably seizure disorders and conditions relating to chronic pain - Differential response to common medications: we tend to have unusual or ""rare"" responses to a wide variety of drugs, which can be dangerous or even lethal - Sensory sensitivities: this tends to be overlooked because it doesn't bother neurotypicals as much as our behavior, but it's a more important component in our daily function and quality of life. Understanding sensory input specifically could enable the development of better supports. Themes Addressed: Co-occurring Conditions, Sensory
Erin, Parent I think co occurring disorders and cognitive and behavioral biology need more attention, because they are the areas that most affect quality of life for autistic people. Themes Addressed: Cognitive and Behavioral Biology, Co-occurring Conditions
Vanessa parrott Co occurring conditions Developmental, cognitive & behavioral biology Themes Addressed: Cognitive and Behavioral Biology, Co-occurring Conditions
Liz More research needs to be done to identify differences in asd between genders. More genetic research to find other ways of diagnosing asd other than behavioral observation is important. In doing genetic research, this should be done for diagnosis and informational purposes, not in an attempt to ""squash out"" autism. Themes Addressed: Acceptance, Gender, Genetics
Anonymous We need to better research health issues associated with Autism Such as metabolic aspects and sleep disorders. Themes Addressed: Co-occurring Conditions, Immune System and Metabolism
Michael In my opinion, the most important research priorities are: molecular biology and neuroscience, developmental biology, and cognitive & behavioral biology. Themes Addressed: Cognitive and Behavioral Biology, Molecular Biology and Neurobiology
Savannah W., Late in life, diagnosed autistic, woman, wife and mother. Autism is still not fully understood on a completely biological basis yet, though we do know it’s a neurological difference of the brain’s structure and “wiring,” and not caused by vaccines, “refrigerator mothers,” or any other nonsensical reasons. It presents in vastly different ways, with varying levels of support needs, based on each individual’s “baseline” at birth and can change in response to the person’s environment from thereon out. Research in this area is a tricky, slippery slope. Autistics want to help future generations, but we are often logical creatures that aren’t always trusting of other’s intentions due to our own past personal traumas too. We need organizations that want to study us, and hear our stories WITHOUT the intent to try and cure or eradicate our neurodivergence. Start by having admired autistic leadership and representation in your organization/company. Explain in full transparency the intentions of your research (hint, it can’t be cure focused). Then take the legal action required to protect our DNA or results from others who are less well-intentioned. Help us help you. We’ve struggled in ways you’ll never understand, but the hope of making it better for the next generation, through information and accommodation, is a motivating factor for our participation. Just don’t abuse this opportunity. Stay above reproach. Stay transparent. And continue to listen to the voices in our community as you proceed. Themes Addressed: Acceptance, Inclusion
Amy Morosini Genetic testing, cognitive behavioral bio, and environmental factors Themes Addressed: Cognitive and Behavioral Biology, Genetics
Katlyn I think the most important research priorities here are painful comorbidities, such as connective tissue disorders. Having sensory differences is already a difficult challenge to face, and pain can often be really overwhelming/overstimulating. Themes Addressed: Co-occurring Conditions, Sensory
Anita Thomson Co-occurring conditions and neuroscience. Metabolic aspects could be an issue. Themes Addressed: Co-occurring Conditions, Immune System and Metabolism, Molecular Biology and Neurobiology
Lisbeth Little Often Immune and metabolic aspects, genetic disorders, and co-occurring conditions of ASD are ignored. Parents need to know what can be done, what to look out for, and also how to get services needed. There is a connection between immune and metabolic aspects and a child with ASD's behavior and that affects their schooling. Parents don't readily know that ASD isn't just neurological or behavioral. It can also affect health and focus to these areas is critical. Themes Addressed: Co-occurring Conditions, Genetics, Immune System and Metabolism
Heidi Parr, Case Manager, Seven Counties Services Need of research why diagnoses are more common in males than females Research priorities: genetic markers, gene therapy, interaction between leaky gut/immune system/gut health affects autism Themes Addressed: Gender, Genetics, Immune System and Metabolism
Tonja Nolan, independent Co-occurring conditions in ASD are critical, as well as determining how to use EMDR rather than talk therapy for those autistics who have strong verbal capcacity. immune and metabolic aspects are also viewed as critical, as a difficulty absorbing nutrients from food is often a part of the picture as is celiac, GERD, or regular stomach/bowel discomforts. Themes Addressed: Co-occurring Conditions, Immune System and Metabolism
Gina Stango Explore the gastrointestinal challenges for many children and adults with ASD and try to treat the GI issues more adequately and thoroughly. Co-occurring conditions, most definitely; particularly ADHD and gastrointestinal issues. There needs to be better treatment for co-occurring conditions, including with identification, regular evaluation and promotion of the most helpful treatments. Because of inadequate funding, providers often limit services and do not make recommendations for additional evaluation and treatment. We certainly need to know more about the medical challenges that are common among people living with ASD. They're overwhelmed by their environments; it would be helpful to try to make them more physically healthy and comfortable. Themes Addressed: Co-occurring Conditions, Sensory
Anonymous Cognitive and behavioral biology and co-occurring conditions. Themes Addressed: Cognitive and Behavioral Biology, Co-occurring Conditions
Denise Wildrick, Autistic Adult and Parent Genetics and neuroscience. Those for me are the only priorities. Autism is a blanket term for so many conditions currently and it is harmful to those with serious needs to share a diagnosis with those who have minimal needs, if any at all. We need to understand and separate the diagnoses. Themes Addressed: Genetics, Molecular Biology and Neurobiology
Lucas Kunach, Fraser Please add as focuses: -- Autistic females and non-binary individuals -- Autistic individuals with co-occurring Down syndrome Themes Addressed: Co-occurring Conditions, Gender
Lisa Nieman, Parent I believe that the whole ABA framework should be questioned, especially in light of so many adults with ASD reporting trauma from it. I also would like to see more research on whether supporting neurodiversity and changing environments helps ASD children more than trying to get them to be more like their neurotypical peers. More research on how to provide effective inclusion would be phenomenal. I'd also like to see research on children with co-occurring disorders such as learning disabilities, anxiety and ASD. I'm not interested in what genes cause autism since I think there are more actionable questions to ask - and I wouldn't want to have fewer members of our society with ASD because it's an important neurotype and identity. I think of it similarly to looking for the ""gay gene"" - possibly interesting, but not actionable for ethical reasons. Themes Addressed: Acceptance, Co-occurring Conditions, Molecular Biology and Neurobiology
Sherrie Kinard, Parent of 2 Spectrum Children Neuroscience, cognitive and behavioral biology. Themes Addressed: Cognitive and Behavioral Biology, Molecular Biology and Neurobiology
Nancy Kearney, Parent adult autistic man in Massachusetts Most important: genetic disorders related to ASD, immune and metabolic aspects and co-occurring conditions in ADS Themes Addressed: Co-occurring Conditions, Genetics, Immune System and Metabolism
Anonymous Co-occuring conditions such as ADHD that may have similar genetic ties. Themes Addressed: Co-occurring Conditions, Genetics
Anonymous Quality of life, sex differences, co-occurring conditions. Themes Addressed: Co-occurring Conditions, Gender
McKenzie Hanson The physiological changes in the brain and body related to intergenerational trauma and highly sensitive persons. The gut and the brain and the connection between serotonin and dopamine and changes through epigenetics. The cognitive empathy factor. What seems like low empathy could be intelligence and concern by autistics being able to recognize patterns quickly. I would be interested to see how autistic females present. And how sexual preference plays into it. ADHD, anxiety, depression, or other mood disorders, and immune system dysfunction comes from a lifetime of masking in institutions not built for us. There’s expansive structures in our minds to be able to create and linear learning models may not be the most supportive in developing our brains. Themes Addressed: Co-occurring Conditions, Gender
Christina Gleason Replace the false dichotomy of Sex Differences with Different Presentations. I was AFAB & but came out as nonbinary. I fit descriptions of Female Autism well. I'm sometimes feminine, never masculine, so that checks out. My kid is also autistic, but AMAB. I found it strange that they also presented with Female Autism instead of male... but then she came out as a trans girl last year. Her Y chromosome didn't predetermine how she presented with Asperger's/ASD. She presented like her gender is said to present. There are a lot of autistic trans/nonbinary folks; it would be worth investigating gender- vs sex-based differences - stressing that all genders can present differently than their prevailing stereotype. Many co-occurring conditions should be investigated. My primary concern is how the results are reported, as many allistic people think that co-occurring conditions ARE AUTISM. It's very important to stress to the public that these conditions are not inherently autistic, but they frequently co-occur. This would help move away from eugenicist cure rhetoric. OT & PT can help treat dyspraxia; speech therapy can help improve pragmatic language; that's not Curing Autism. Also stress that treating these conditions doesn't make one Less Autistic. But treatment can decrease pain, discomfort & trauma stemming from some of these conditions, which decreases the incidence of meltdowns, shutdowns & other things that behavioral modification does NOT TREAT. Themes Addressed: Acceptance, Co-occurring Conditions, Gender
Anonymous Why does caffeine work for only some autistic people and in only some dosages, why do most autistic people have gastronomical problems, why are so many autistic people lgbtqia plus, how does sensory seeking work and what does stimming do to the brain? Themes Addressed: Gender, Immune System and Metabolism, Sensory
Asa Co-occurring conditions, neuroscience, developmental biology Themes Addressed: Cognitive and Behavioral Biology, Co-occurring Conditions, Molecular Biology and Neurobiology
Alexis Oliver Williams Co-occurring conditions, possible effects of genetic or environment for ASD diagnosis. Themes Addressed: Co-occurring Conditions, Genetics
Anonymous Anything that isn't trying to cure autism should be a priority! Very little seems to be known in terms of autism and synesthesia, which could help understand some of the most fascinating autistic capabilities. Themes Addressed: Acceptance, Sensory
Anonymous sex difference, immune and metabolic, co-occurring conditions Themes Addressed: Co-occurring Conditions, Gender, Immune System and Metabolism
Ren Koloni As I mentioned in my response to the first question, it is critical that research in this area focuses on the needs of autistic people, not the interests of ableism or eugenics. There are very real biological concerns for autistic people, and none of them are ""what makes us autistic."" Rather, we want to better understand our relationship with certain disabling comorbidities, such as IBS, autoimmune disorders, chronic pain, and seizure disorders. Again, these relationships are not important because they need to be understood and eliminated, but because we need to understand how to best approach them in the case of autistic patients seeking care and relief. A particular relationship between autism and COVID-19 is also becoming steadily apparent. Since many of us live in group care facilities or have other risk factors, this is even more of a priority. Finally, I point out that it is impossible to approach any of these biological relationships responsibly without also considering their social aspects. No research topic is free of this responsibility, whether the subject is healthcare disparities or genetic disorders. But when it comes to disabilities and illnesses often related to other axes of oppression, such as intersex conditions and conditions that cause/contribute to fatness, it is fundamentally irresponsible for research to ignore the sociocultural world that underpins everything, even and especially medicine. Themes Addressed: Acceptance, Co-occurring Conditions
Anonymous I've always wondered if seizure disorders could have some ties to the sensory processing aspect of autism because some seizures have a photosensitive link, and I'm also interested in learning more about gender identity and autism. Themes Addressed: Co-occurring Conditions, Gender
Autistic Self Advocacy Network There has already been disproportionate funding directed towards this objective, and we believe that this imbalance harms our community. For decades, research has been conducted into the biological causes of autism for the purpose of eliminating autistic people altogether. Out of the IACC Strategic Plan’s research objectives, Question 2 received the biggest allocation of funding in both 2017 ($143.1 million) and 2018 ($163.7 million). We recommend that funding for this question be lowered to a proportionate level, and that the research conducted emphasize priorities identified by autistic people ourselves. We also support expanded funding for research related to the “biology of co-occurring conditions in ASD.” Autistic people often experience a myriad of co-occurring conditions, such as sleep disorders, epilepsy, and gastrointestinal and connective tissue disorders, that negatively impact the overall quality of our lives. Going forward, we would like to see research into co-occurring conditions comprise the majority of funding for this question, and a larger percentage of the total funding as compared to 2017 (8%) or 2018 (7%). Themes Addressed: Acceptance, Co-occurring Conditions
Anonymous Molecular and developmental biology, CO occurring conditions Themes Addressed: Cognitive and Behavioral Biology, Co-occurring Conditions, Molecular Biology and Neurobiology
Anonymous sex differences and co-occurring conditions in ASD Themes Addressed: Co-occurring Conditions, Gender
Corrie Whitmer I would very much like to see additional research into conditions that are co-morbid with autism. In particular, I would like to know more about the connection between autism and stomach problems, and between autism and EDS/connective tissue disorders. I would also love to see research on the incidence of migraine in autistic people, and on how the sensory aspects of autism influence how migraine presents in autistics. I also think that, given COVID-19, evaluating the relationship between autism and immune system issues is a critical research area. Themes Addressed: Co-occurring Conditions, Immune System and Metabolism
Anonymous The most important research priorities are the ones that autistic people ask for, such as investigating co-occurring conditions that actually do harm, such as epilepsy, rather than focusing on ""treating"" neurodivergent conditions that need support. Themes Addressed: Acceptance, Co-occurring Conditions
Anonymous Sex differences but more so similarities, co-occurring conditions, neuroscience Themes Addressed: Co-occurring Conditions, Gender, Molecular Biology and Neurobiology
Anna R Myers I think it is more important to look at co-occurring conditions with autism, as well as metabolic differences. As these things can actually cause harm to an autistic persons life, while the other things cannot Themes Addressed: Co-occurring Conditions, Immune System and Metabolism
Somer, Autistic Sex differences must be stressed in light of the disturbing trend to conflate sex with gender. Co-occurring conditions are important for both identification of autism and for receiving needed remedy of conditions. Themes Addressed: Co-occurring Conditions, Gender
Anonymous - Listening to people with ASD who feel that research in this area is not a priority compared with other areas - Focusing on research that seeks to improve the treatment of co-occuring conditions, NOT trying to ""cure"" autism—people on the spectrum have many traits that are valuable to us and to our communities Themes Addressed: Acceptance, Co-occurring Conditions
Korri Ward, parent, science teacher, local advocate Cognitive and behavioral biology and immune and metabolic aspects might lead to medical intervention and improve the lives of people with ASD. Themes Addressed: Cognitive and Behavioral Biology, Immune System and Metabolism
Alicia Munson, The Arc Minnesota The vast majority of research dollars have gone toward answering questions about the biological origin of Autism, “risk factors”, and medical-model “interventions”. These questions could lead to screening/detection tools that may result in termination of life of Autistic people, perpetuating a history of eugenics in our disability community. Furthermore, the research conducted up to this point has not yielded functional results; there is still a massive amount of disinformation around Autism. We firmly believe it is time to stop pathologizing Autism, and start honoring Autism as part of the rich, diverse lived experience. We encourage the IACC to: Separate Autism from comorbidities. Understand how conversations about the biology of ASD have been used to harm the Autism community. Ensure that Autistic individuals are at the center of conversations about the biology of ASD, if this is to remain a focus. Advocate for state Departments of Health to lead on scientific research/study around the biology of Autism in ways that are intersectional and honor disabled identity. Themes Addressed: Acceptance, Inclusion
National Council on Severe Autism, National Council on Severe Autism Because autism is largely the result of abnormal development of the brain during the fetal and infant periods, resulting in lifelong micro-structural pathology and impaired connectivity and functionality, NCSA strongly supports research into the factors that lead to this dysregulated brain development. This research may shed a light on how to prevent the defects in neurogenesis, neural migration, synaptic connectivity, and pruning from occurring in the first place. Since research has emphatically shown that the vast majority of autism cases are not rooted in DNA sequence errors, we stress the importance of studying *dysregulated transcription* in individuals with idiopathic autism (without rare mutations that lead to autism-like syndromes) via study of peripheral tissues, perhaps including IPSCs turned into neuron clusters. Detecting the origins of faulty transcription can illuminate how autism arises in the first place, and in so doing, highlight desperately needed routes for prevention. Further research is also needed on perinatal stressors that may also contribute to impairments in brain development, such as prematurity, inflammation, and certain medications. Studies aimed at reducing severity of debilitating co-occuring conditons such as seizures, OCD, anxiety and intellectual disability should also be a priority. Themes Addressed: Co-occurring Conditions, Molecular Biology and Neurobiology
Anonymous The focus on biology concerns me, because it, in my mind, is connected to a view of autism as something to be ""cured"" or eradicated. It is a naturally occurring neurodivergence that has value. In my experience, most autistics do not want to be ""cured"" of their autism. If we are going to focus on biology, I would suggest looking into biological and neurological differences between autistics and neurotypicals in how they process sensory information. There are a lot of misconceptions out there about sensory processing differences in autistics and how to ""treat"" them. If we better understood the differences in sensory processing, there might be increased understanding and empathy around sensory needs being real and not a ""preference"" or something that will change/decrease with exposure. Themes Addressed: Acceptance, Sensory
Anonymous 1) Investigation into the underlying causes of motor control difficulties commonly associated with autism. 2) Investigation into the underlying causes of the extreme sensory sensitivities commonly associated with autism. 3) Please note that many autistic individuals, myself included, are deeply uncomfortable with research looking for an ""autism gene"" that might be screened for. In a kinder universe research like this might be a boon to science. In the universe I actually have to live in, I worry about it being used to target autistic people and inflict ableist or even eugenicist policies on us. (For anyone who thinks that being concerned about eugenics is ""overreacting,"" please bear in mind that early and still-influential autism reserch was conducted by Hans Asperger, who helped officials in Nazi Germany carry out eugenics policies against disabled children.) It would be most likely to result in an improvement in the quality of daily life if research in this area focused on the causes and possible mitigation of sensory processing difficulties and problems with volitional movement. While these things often are not included in the current diagnostic criteria for autism, they are the underlying cause of most of my my ""autistic behaviours"" and are among the most significant barriers to day-to-day functioning. Themes Addressed: Acceptance, Sensory
Autism Science Foundation ASF urges the IACC to adopt the following research priorities: 3. Including individuals with intellectual disabilities. We need to address the persistent exclusion of people with ID+ASD to fully understand ASD etiology and develop treatments. • Understanding sex and gender differences in ASD. Not enough research has focused on the biological reasons for the disparity between males and females in the rate of autism diagnosis, and in the differences in core and associated symptoms, including IQ differences, common/rare genetic variations, and comorbidities. Including more females in autism research and including sex as a covariate in research studies could lead to major advancements in the identification and treatment of ASD. Themes Addressed: Co-occurring Conditions, Gender
Erin Prangley, Consortium for Citizens with Disabilities' Developmental Disabilities, Autism and Family Supports Task Force We continue to need a better understanding of all the different types of ASD. Thanks to the work of the NIH research institutes, we have a better understanding that there is not just one autism. Rather, there are many causes to our neurological differences. There is a research gap that focuses on the most challenging behaviors related to autism. We need to understand how best to support individuals with autism with support needs and behaviors that put them at risk of injury or avoidable institutionalization or justice system involvement. Identifying risk factors and support strategies that ensure the safety of ASD individuals so that we can better help them maintain their freedom and independence. This needs to be better defined and articulated in the strategic plan, including what is meant by disabling aspects and why they need to be prevented. Particularly as it relates to the aspects of autism spectrum disorder that cause early or premature mortality, poor health outcomes,out of home placement, institutionalization, involvement in criminal justice systems and other poor lifecourse outcomes such as high school dropout, unemployment, etc.. Themes Addressed: Acceptance, Cognitive and Behavioral Biology
Anonymous Plenty of funding has been spent on research focused on understanding the biology of ASD. This, however, is fundamentally problematic as centering our understanding on the biology of ASD leads to the conclusion that ASD is a disease with a biological cause, and further that it should be ""eliminated."" Recognizing that ASD may instead simply describe a set of biological differences would go further to improving quality of life for autistic people. Research into co-occuring conditions (including the frequent association with inflammation and inflammatory conditions) and possible biological connections could directly benefit autistic people's mental and physical wellbeing. Themes Addressed: Acceptance, Co-occurring Conditions
American Academy of Pediatrics As researchers continue to investigate the known biological causes of ASD, the AAP reiterates the need to ensure that Black, Latinx, Asian and other people of color are included in these studies. It is imperative that genetics studies include diverse populations that might present with different mutations. As such, it is important to broaden the access to genetic testing and address disparities in those who have received such testing. In addition, it is important to note that the relationship between knowing the biologic etiology/mechanism of a condition and paving a path toward the study and establishment of medical treatments is not well-known to many people. If this process were better known, it could create more willingness to participate in genetics research. Therefore, more education is needed for the general public to increase the importance of and need for such research. The Academy encourages the IACC to foster plain language research consents and explanations to allow for more people to meaningfully engage in critical research. The Academy also expresses the need to explore the autistic person’s perspectives on biologic research to ensure that the research in biological underpinnings is not misused to “cure” or eradicate neurodiversity. Additionally, support for research participation by individuals at the community level is needed to increase the diversity of research participations and reduce the barriers currently seen related to research participation like transportation, costs associated with time off work and missed interventions. Pediatricians can serve as a conduit to research and allow for equitable inclusion for any person to participate regardless of their access to an academic medical center. Themes Addressed: Acceptance, Inclusion

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