Question 2 Responses

How Can I Understand What is Happening? (Underlying Biology of ASD)

Themes from Responses to Question 2

• Need further research on the genetics of autism, and genetic tests should be more accessible
• Need more research on cognitive and behavioral biology
• Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptoms
• Need more research on the biology and relationship of co-occurring conditions in ASD
• Need more developmental biology research
• Current priorities are appropriate (molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD)
• Understanding the biology of ASD is not a priority relative to other areas (i.e. treatment and services)
• Need more research and a better understanding of genetic syndromes related to ASD
• Need to prioritize gut-brain interaction research
• Need research to better understand, differentiate, and treat subgroups of people with autism
• Need more research into the contribution of immune and metabolic pathways to autism
• Need more research on the molecular biology of ASD
• Need more research on the basic neuroscience of ASD
• Need more research to better understand sensory processing and motor function in ASD
• Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
• Need more translational and interdisciplinary research to improve the lives of people with ASD
• Multiple Themes Addressed

Need further research on the genetics of autism, and genetic tests should be more accessible

Respondent	Response
Cassandra Stalzer, Parent	Access to specialists who have a higher level of understanding and the curiosity to look for other etiologies is extremely limited. If a parent gets turned down for the occasional genetics clinic, there are not other options. It's unclear what the criteria is for accessing these services. The customer service around these specialties is terrible - it's phone tree hell.
Cathy, Parent/Conservator	Genetics, why does it occur in some cousins of a generation and not others in the same generation?
David Feickert, NA	Genetics that cause ASD and what chromosomes are the leading factor to ASD
Jennifer Hane, NA	Genetics, and co-occurring conditions
Maria Montoya, Enroll Detroit	Research based on genetics and race and how it relates to diagnosis.
Anonymous	Continued research into genetic patterns and anomalies.
Anonymous	Genetics
Heather Rocha	I believe it is important to look into the genetics.
Kristi Layman, Parent	I think genetic testing should be standard for all who have been diagnosed.
Toni Silveira, mother & educator	I have volunteered my children's DNA to RICART because it is baffling that I have boy/girl twins - the boy has ASD the girl does not. I think I would like more study on genetics. My children were conceived through IVF and I wonder if that was a factor.
Anonymous	Determining the underlying genetic and biological bases for the symptoms of autism.
Steven Graff, Ph.D., Tri-Counties Regional Center, Oxnard CA	genetic markers needed. environmental causations [PBA, etc.] need to be identified.
Anonymous	People with autism are just as human and valuable as other people. A possible diagnosis of autism before or shortly after birth tells you little about a person's opportunities and potential. Beware of research that only leads to genetic testing to "eliminate" autism by eliminating births.
Donna Miglino, Parent	Genetic testing needs to be mandatory, and insurance companies should NOT have the power to refuse payment.
Kira Parris-Moore, Parent of an autistic child	Research needs to be geared towards identifying and isolating the gene that causes autism. I also wonder if there is any electrical brain stimulation or interventions that can stimulate speech in nonverbal autistic children.
Anonymous	causes and genetics
Lucy Gratz, Job Coach/Developer Assistance	I am not sure but cognitive to me and social pathways are confused and I wish we could identify how to help children in some way earlier to speed the clarity for their thinking patterns for learning-my daughter is as an adult going to developmental optometry for revisiting brain pathways she never had clearly established. When she was young she had sensory integration to help with sensory message pathways where she missed her motor development process. Genetic help would be importnt of course because now we have to worry about likelihood of passing on the genes that cause serious Autism-my daughter was severe early on through almost high school before she moved greatly forward.We had such a mixture of abilities by age range. Anxiety issues seem to be a huge stumbling block for many I have met, and meltdowns over not being able to control too much coming at them at once. The social mindblindnessstill is an issue but it took us years post high school to make a significant dent in the issues with it.
Alicia	My husband's family now has 3 generations of autism. We would love to know more about the genetic predisposition. Also, more research is needed on the effects of dental amalgams and how heavy metal toxicity effects the brain. Would also like to see research on Mitochondrial Dysfunction.
Joe Hickey, CHSC Dubuque	I hope more research can go into genetics.
Dr. C. Rick Ellis, Spectrum Psychological and Forensic Services	qEEG, varieties of pEMF including TMS, LORETA 19 Channel Neurofeedback, tACS, tDCS
Alexander MacInnis, Stanford University	We should strive to understand the biological mechanisms that underlie the symptoms that define an ASD diagnosis, specifically in order to find and test effective treatments and preventive measures. There is evidence of ongoing biological disturbances in ASD, which may imply opportunities for effective treatment and prevention. Genetic factors may be important in the context of gene x environment x timing interactions. However genetic factors (e.g. SNPs and CNV variations) on their own are unlikely to lead to effective treatment or prevention.
Mike , PASKERT	Will it be possible someday to replace a damaged gene that contributes to the disorder?
DeAnna Parker, Parent/Professional	I believe the most important would be determining if ASD is genetic or if genetics play a role. I am uncertain if this has been established. Also, again, the environmental effects on ASD.

Need more research on cognitive and behavioral biology

Respondent	Response
Karen Delaney	Behavior is key in our life now that our son is 19 - I really don't care what caused it anymore but it's more how to live with it. We deal with a lot of self-injury and aggression so I would like to see research into behaviors sciences - the psychiatrists are quick to write a prescription but can't find anyone to help me deal with the behaviors. The co-occuring disorders has become a HUGE issue now that our son is older...the anxiety and OCD type behaviors are ruling our lives in ways that we never expected. I as his mother no longer feel comfortable taking him any where alone due to his size - more meltdowns have resulted from unmet OCD needs than anything else and since he is limited in his verbal abilities and cognition there is little anyone can do other than try yet another medication.
Anonymous	Cognitive and behavioral biology
Anonymous	cognitive and behavioral biology
Michelle Hoffman, WA State Dept of Health-Healthy Starts and Transitions Unit-Children with Special Health Care Needs program	Definitely the cognitive and behavioral biology, as so many autistic kids have good cognitive skills but have sensory or behavioral issues that prevent their success. Far too many kids are prescribed powerful antipsychotic drugs at young ages where it impacts their development and their overall health--more research needs to address non-pharmaceutical interventions.
Anonymous	Cognitive and behavioral biology
Anonymous	cognitive and behavioral biology
Anonymous	Cognitive and behavioral biology to find things which help treat symptoms that keep some from being able to function in society.
kimberly williams	Cognitive and Behavioral biology
Anonymous	Cognitive and behavioral biology.
Anonymous	cognitive and behavioral biology
Peter W. Allen	Cognitive and Behavioral biology.
Anonymous	Cognitive and behavioral biology. More research on this area
Anonymous	cognitive and behavioral biology
Stacey Ireland, Parent	Cognitive and behavioral biology
Julie, Tuberous Sclerosis Alliance	Cognitive and behavioral research is critical for families and proper school supports.
Parent	Of the choices, cognitive and behavioral biology research would probably be most useful to parents.
Geovana	Cognitive and behavioral biology
Toni Poh, Educator	Cognitive and behavioral biology.
Anonymous	Cognitive and behavioral biology
Brian Kelmar, Parent of son with ASD	cognitive and behavioral
Amy belzile	Cognitive and behavioral biology.
Glowyn Roughton, Emg consulting	Behavioral psychology- how to improve lives of people with autism
Kayla Weant, Prosper Independent School District	I think more research needs to be done in the field of cognitive and behavioral biology
Anonymous	Cognitive and bahavioural biology - but not to detriment of practical interventions, therapy and support to improve quality of life. Autism is not a 'fixable' illness but a way of engaging with, experiencing and reacting to the world. Research needs to switch from medical interventions which cause trauma, to truly practical approached which enable families to succeed in supporting those w autism and in helping adults with autism lead full, meaningful lives with as much independence as possible.
Mary Parnell, Parent	cognitive and behavior biology. These children are not neuro typical but our therapist are base on children who are
Anonymous	cognitive and behavioral biology
Judy, parent	I would like to see more research and attention given to behavior issues that arise with puberty and transition out of elementary school. The ages of 11-14 and largely overlooked and it is a time if incredible changes - physical, emotional, expectations from others as kids get older. Behaviors are more tolerated in young children, but when a middle schooler acts out suddenly you are contending with issues of perceived bullying and even law enforcement involvement.
Anonymous	Cognitive and behavioral biology Understanding why autistics are the way they are. But without the intention of making them appear neurotypical.
deborah weiss	cognitive and behavioral biology

Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptoms

Respondent	Response
Anonymous	Again, big decision between what is important. Research priorities should bring us to the same table so all of us who work with this population have similar evidence to base our recommendations for assessment and treatment on.
Bonnie Polakoff, Educational Advocate	It would be great if there were some kind of brain imaging that could be diagnostic for ASD, so there is no question whether someone is affected or not. I currently have two children who have been diagnosed with ASD by a leading specialist in ASD at Mass. General and yet, the schools are saying that "they don't see it," and are denying services to these kids.
Dwight Jennings	My clinical observations are that mothers have significant CMD, thus altering chemical environment in which child is gestated ( elevated substance P). Research shows asd children are born with elevated substance p. From my clinical perspective craniomandibular dysfunction is a major component of asd. This leads to increased trigeminal tone, thus causing central sensitization (glial activation). Recent research implicates CMD as to cause of many movement disorders as well as major influence on brain neurotransmitter levels by way of altering "substance P" levels.
Elena	Longevity issues (suicide rate, metabolic damage), sensory integration and sensitivities, differences in presentation between the genders (women vastly underdiagnosed). Sensory integration underlies a great deal of our problems. Helping adult autistics understand how to work with those issues would be extremely helpful.
Leslie, Maryk	There are many ways to examine the depth of Autism & the medical community needs to refer out for intense screening: EEG, MRI, biomedical markers, etc. Insurance companies are hindering progress by refusing or limiting payment.
Tatia Kortepeter and Vicki Mabanta, A Work in Progress, LLC	More consideration needs to be given to considering all the information and whether another diagnosis would be a better fit. There seems to be quite a bit of overdiagnosing. For example, many of the criteria for ASD appear in children with Down syndrome. However, that should be their diagnosis. It's important to treat symptoms and not create new issues.
MRJ	There seems to be a blurring and a lack of understanding across the health system around when a person is on the spectrum vs has other issues that can present as being autistic. There are several symptoms that have cross over (i.e. Anxiety, sensory issues, developmental delays). It's hard to get a handle on a diadnose(s) when one health care provider thinks your child is autistic sbd the next one does not.
Russell Goodman	Autistic wiring seems comorbid with a number of other conditions that relate to neurological wiring, and this includes sleep, anxiety, and body awareness (from not noticing pain down to fine motor control).
Amy belzile	Identifying underlying medical issues that contributes to behaviors that cause autistics behaviors. And a protocol for medical community to follow instead of accepting autism as the diagnosis. Too much time is wasted by parents not knowing what to do next.
Anonymous	There is a tremendous need to review the markers of those individuals who are diagnosed with ASD and epilepsy as well as those who have a clear regression
Heidi Scheer, Autism Hope Alliance	We need research on the biomedical treatments that are WORKING and changing the lives of many children with autism and which NONE are covered by insurance! This is CRITICAL!!!
Anonymous	Lynn Waterhouse convincingly (to me) argues in her research review "Rethinking Autism: Variation and Complexity" that autism is not a unified condition. Instead, it is a set of traits, with many underlying conditions and causes. If we take Dr. Waterhouse's argument seriously, autism research has to change. Taking a small sample of autistic people who probably all have distinct underlying conditions and distinct clusters of traits, and comparing them with a control group, simply isn't meaningful. Studies with this design should not be supported. Instead, research should be skeptical of the category "autism" and try to unpack traits. For example, what can we learn about people with high sensitivity to sound? What can we learn about people who excel at analytical thinking but struggle socially? What can we learn about people who self-injure? What can we learn about people with specific genetic markers? This kind of research will teach us what autism really "is," and lead to more useful diagnostic criteria and categories.

Need more research on the biology and relationship of co-occurring conditions in ASD

Respondent	Response
A Kimbrell	1) More responsive findings into co-occuring conditions with ASD. Specifically, education and advocacy for practitioners.
Aimee Combs	co-occurring conditions in ASD. Media has portrayed autism as a mental illness. An individual with autism can have more than one thing going on. These guys that have committed horrific crimes did not do so as a result of autism but rather because they were psychotic.
Alexandra Tien, MD	Link between anorexia nervosa and autism--on my paternal side there seems to be a strong link. Feel free to contact me. Comorbidities of autism, especially mood disorders are a big problem with a large percentage of patients Also neuroscience topics such as dendritic pruning seems like very important research.
Paula Roegge	There are so many co-occurring conditions with ASD - how do we know how to treat them? It's very difficult to treat ASD, OCD, SPD, anxiety, depression all at the same time. Then you add ADHD on top of that. It's almost impossible to know what to do when for your child. Medication and therapy help a great deal, but on a day-to-day basis, many parents feel like they are drowning.
Christy Chapman	Co-occurring conditions are a big issue that is often overlooked, as I mentioned under question 1. Anxiety and depression are especially problematic in teens and adults with Autism, which often gets missed.
Carolyn Hyman	Co-morbidity and the onset of likely cohorts. As we know, Autism never walks alone.
Carol Moore, Early Intervention/Early Childhood Special Education	Co-occuring psychiatric and medical conditions should be studied to determine if there are underlying genetic linkages or other causal factors.
Barbra Lippenga	My son not only has autism but ADHD and OCD. He also had a lot of problems with frequent loose bowels.
Jacquelyn Eder Sample	1. Co-occuring conditions in ASD, specifically anxiety.
Erika Liljedahl	The number one research priority in my opinion is how to treat co-occurring conditions, such as ADHD and ASD. In my career as a neuropsychologist and as an advocate and researcher of ASD, there are multiple families I've encountered who do not seem to be getting relevant and appropriate treatment for co-occurring conditions. Continued research in evidence-based treatment is important. Knowing the genetic markers is interesting but a practical approach for treatment actually makes a difference in our communities.
Joaquin Fuentes, Policlinica Gipuzkoa & Gautena, San Sebastian, Spain	Co-ocurring conditions in ASD and adequate treatments for these commorbidities
Anonymous	Great need to diligently identify comorbid or associated medical conditions. GP/PC tendency is to consider signs and symptoms as just "autism". Even clinical geneticists miss subtle morphological clues. Educate primary care to refer to known centers of integrated care for ASD.
Amy	Co occurring conditions
Anonymous	Co-occur in conditions: ASD comes with many other conditions. It would be helpful to know what they are and all metrics related. Family services (awareness) would also be helpful
Leslie Fox, US Department of Education - OSEP	Co-occurring conditions with ASD are rarely addressed in birth to five programs although diet sensitivities, sleep disorders, attention issues and safety concerns are prevalent. Parents should be given support and information on the resources available if they identify any of these co-morbid conditions.
Lisa White, Family Member	The co-occuring conditions in ASD such as bipolar disorders, anxiety, depression make family life difficult and also the medications used for treatment often have very detrimental side-effects such as weight gain, which then cause additional problems.
Anonymous	Co-occurring conditions AND appropriate trained support related to co-occuring conditions - particularly related to mental health
Neva Parkins, Parent and Advocate	Research and gain more information in regards to co-occurring mental health issues and how one effects the other. I would like to see information indicating whether the prevalence of co-occurrence for ASD and mental health is primarily mental health or ASD. I also would like to see policies which indicate that someone with co-occurring ASD and mental health are treated as the ASD is primary, because you have to teach the person to live in an integrated community due to ASD, you cannot medicate it away and on the other hand, mental health issues can be treated sufficiently to allow a person to have quality life and requires less training for integration.
Nan McVicker	Research and gain more information in regards to co-occurring mental health issues and how one effects the other. I would like to see information indicating whether the prevalence of co-occurrence for ASD and mental health is primarily mental health or ASD. I also would like to see policies which indicate that someone with co-occurring ASD and mental health are treated as the ASD is primary, because you have to teach the person to live in an integrated community due to ASD, you cannot medicate it away and on the other hand, mental health issues can be treated sufficiently to allow a person to have quality life and requires less training for integration.
Paula Webster, West Virginia University	Anxiety is a co-occurring condition in autism that seems to be understudied, especially in adolescents entering puberty. The increase in anxiety, depression, and suicidal ideation is a great concern to parents with children in the age group and resources (behavioral, pharmacological, and in the schools) are needed to help families. Interventions to help adolescents with autism process all of the physical and social demands at this age are greatly needed. Unfortunately, serious events are often dealt with in the ER, which is no place for these kids. Therapists trained in CBT and who know autism are a rarity and because of that fact, getting the help they need is often very delayed (months) or non-existent.
Anonymous	ASD and mental illness diagnosis
Roseann Schaaf	co-occurring conditions
Sarah Hunter	I think the most important research question to address is the ways in which ASD impacts occurrence, screening, and diagnosis of mental health disorders, particularly depression, anxiety, obsessive compulsive disorder, and schizophrenia. I also think that more research needs to be done into the long term use of risperadone in young children, adolescents, and adults, who do not experience psychotic symptoms that we know of.
Sara Luterman, Self Advocate	The most important biology issue that needs attention is co-occurring conditions. Epilepsy is one of the top killers of autistics.
Trish Bawn	co-concurring conditions in ASD
Anita Hawks, autism mom and advocate	My son experiences asd with ADHD and bipolar. He is aggressive, powerful and very intelligent. He escapes when he sees an opportunity. He does not have an appropriate and useful form of communication which leads to inappropriate behavior.
IEP parent Advocate	there continues to be a need for medical research and mental illness for those with ASD and those not diagnosed yet.There are little to none mental health doctor's treating ASD via Medication methods.
Tracy Robbins, mother/care giver	behavioral and sleep issues. huh? Research should identify why the brain will not calm enough to sleep through the night, that would partially resolve bad behavioral issues.
Au	I'd like to see more research into effective accommodations, especially alternative modes of communication, with the goal of allowing autistic people to participate equally in the workplace, in schools, and in society in general. I'd like to see policies meant specifically to protect autistic people from discrimination and mistreatment on the basis of their neurology, recognizing the barrier that societal prejudice and against the disabled and neuro-divergent can present in all aspects of life, and the negative impact that pathologization of autism by psychiatry and the medical establishment has had, and continues to have, on the autistic community. As for co-occurring conditions, much more research ought to be focused on the extremely high rates of depression and suicide in the autistic population, on the causes, compounding factors, and potential remedies for them.
Blake Hall	Co-occurring conditions
Brett Gilleo, Big Sky Therapeutic Services, PLLC	Co-occurring and genetically related issues.
Cindy Montgomery, Teachability	Co-occurring conditions such as seizures, anxiety and depression are top concerns for our family. Neurologists specializing in seizure disorders need more research. Psychiatrists need more research on the relationship between autism and anxiety and/or depression.
Chandler Perry, MS, BCBA, BSL, Indian Creek Foundation	Co-occurring Conditions
Debra Schafer, Education Navigation, LLC	For parents today, the internet provides a plethora of information about the biology of ASD. The challenge with this, however, is that many parents find themselves on "information overload," which exacerbates their concerns and frustrations. Co-occurring conditions do make the treatment of ASD more complicated. However, depending upon the clinician the parents see, an inaccurate diagnosis is often provided and parents spend months and years pursuing interventions and services that may not be targeting the actual needs.
Gillian Pilcher, Parent of 2 with high functioning Aut	I would like to see more research on co-occurring conditions. It is often the combination of conditions that make it difficult to deal with behaviors.
Grace McCusker	Co-occurring conditions
Anonymous	co-occurring conditions in ASD, specifically ADHD
Anonymous	More needs to be done to understand the interrelationship between ASD and co-occurring conditions. This could be beneficial both in helping to identify individuals that should be screened for ASD given their already diagnosed conditions and help with treatments. It can be very difficult determining the best course of action when the treatment for one condition may cause a negative reaction due to a co-occurring condition.
Anonymous	co-occurring conditions
Anonymous	Co-occurring conditions with ASD.
Lucia Rafala, Parent Of child with ASD	co-occurring conditions in ASD
Mary, Mom , teacher & advocate of children with autism	Comorbidity with bipolar & ADHD
Melissa Friesl, parent	My son also has ADHD. I think a lot of children with autism have other conditions as well. Again, this was something I knew very little about. I would also like to know what causes autism, it seems so much more prevalent now. Is it genetic? biological? Definitely, more research is needed.
Anonymous	More research into co-occurring conditions in ASD and educating parents and families on what to watch for in regards to co-occurring conditions. Also, more education to pediatricians and primary care physicians on what to watch for. Many people impacted by ASD are so busy with the day to day stuff that they don't know what to watch for and are completely caught off guard when a co-occurring condition becomes an issue that they are unprepared to recognize it or begin to know how to deal with it.
Michael Notaro, University of Wisconsin-Madison	I think that doctors and teachers need to be aware of co-occurring conditions so that a child is evaluated and diagnosed properly in order to get the help that they need as soon as possible.
Anna	I think more could be focused on co-occurring conditions. Too long has psychology focused on people with one condition and exclusionary to people having multiple conditions (like adhd, epilepsy, mitochondrial disorder, GI issues). There are a lot of things that make autistic people respond differently to treatments and medications than NT people or even other ND people. Also, on a sociological idea, more research can be given on removing barriers that keep autistic adults from being able to access quality healthcare.
Mary Komperda, Parent	The behavior and the difficulties in school make it so difficult to understand. Teachers don't understand, parents don't understand, some professionals don't understand. Parenting is different than you imaged and parents need help with this early and often as the child grow. The co-occurring conditions make things even more difficult.
Nathaniel Geyer, MS	Research on comorbid health problems such as Cancer, STDs, Digestion issues, and Psychological Disorders.
Tamara Ratley, Principal at CEC-North	In this field negative behavior tends to be the biggest concern. I think with that is co-morbid issues and the blame put on bc he has asd he did.... I find it unacceptable bc we are all responsible for our actions- that is what we teach our students. Now know we bend for issues and circumstances.
Anonymous	Co-occurring conditions
Parent	Co-occurring conditions are not important in my mind. These differ dramatically across the population of those with autism, so this is just noise in the research. An all out and coordinated effort of basic research to discover the one, two, three or more reasons / causes for this epidemic is required.
Anonymous	More research into anxiety and other comorbid disorders
Anonymous	Co-occurring conditions.
Alice Marx, Manhattan Childrens Center (my granddaughter's school)	As grandparents, my husband and I are extremely interested in what causes autism and particularly, co-occurring conditions in ASD, If I may speak for all grandparents, as a group, we are basically out of the loop when it comes to understanding our grandchild's condition. Not being parents, we would like to know what other conditions our granddaughter has in addition to being on the spectrum. We have attended conferences at the Seaver Institute at Mt. Sinai hospital which is doing cutting edge research in determining genetics and autism.
Wendy	Giving families knowledge of what other conditions are common with autism is important. Research on co-conditions, and the effects of these would be helpful.
Eric J Jorgensen	Co-occurring conditions - which present the most risk/likelihood? Research has identified individuals with Down Syndrome have a higher incidence of Alzheimers; are there similar conditions those with ASD are prone to?
Kristina, Project Youth Learning and Leadership	So many students with ASD also have "dyslexia" and or all kinds of "other" learning issues. Schools struggle with these cross sections and students are often "left behind." While we help to educate the average citizen and teachers, we need to examine how a label like ASD breaks down in terms of how co-occurring conditions are being prioritized.
Mary Schmidt	Co-occurring conditions. Other diagnoses such as anxiety and depression, speech impairment and hearing loss should also be considered when determining services available for a person with autism.
Alexa Appel, Autistic person	I really don't think it's a sex difference so much as a "things present differently because of how boys and girls are socialized" difference. I'd like more research into things like dyspraxia, digestion, and muscle tone that are often found with autism and if there is one more study about the vaccine "theory" that has been so thoroughly disproven by this point I will probably just start crying.
Rebecca Singleton	The co-occurring conditions and if they are just part of ASD
Cynthia McLaughlin-Share	Investigation into co-occuring issues. However, we already know most of these neurological issues are coming from the same area in the brain --- it's how it's being expressed that's the difference. In general, ppl who work with those on the spectrum need more neuroscience. The most important issue is civil rights. Period.
Sarah Joor	cognitive & behavioral biology - progress increases when behaviors decrease.
Anonymous	Co-occuring mental health issues need to be a priority in research, focusing on effective & available treatments.
Amber L Perry, ASAN	Boys tend to be lower functioning than girls. One reason is the corpus collosum operates much faster in females. Autism has been determined to be both genetic and environmental. Could it be due to Agent Orange exposure by a parent? Smoking or Alcohol? Preeclampsia? We don't know. We are still studying it. Co-occurring conditions include ADHD, Bipolar Disorder, PTSD, personality disorder, brain chemical imbalances, etc. Conditions similar are those listed above as well as Williams Syndrome and Prader-Willi Syndrome, those those do have differences.
Anonymous	Co-occurring conditions in ASD. We never seem to address that 50-60% of children diagnosed with ASD have other comorbid conditions that are linked to ASD. By not addressing these additional disabilities or conditions, we never address the needs of that population adequately.
Rachel Ealy, High School Teacher	I think there needs to be more research on anxiety and ASD and how to treat the mental health aspects of ASD including anxiety, depression and bipolar disorder.
Jessica Philips, Commonwealth Autism	More research is needed re: prevalence of co-occurring conditions in ASD. More research is needed re: effective treatment of co-occurring conditions in people with ASD.
Anonymous	Co-occuring conditions with ASD, etymology.
Anonymous	comorbid conditions including seizures and mitochondrial dysfunction
Anonymous	I consider the most important research priorities, policy issues and gaps in co-occurring conditions in ASD are the social determinants of health and well being for diverse children, youth, adults, families and communities. I consider that there are marked gaps in local, state and federal policy and practice in providing effective, innovative, progressive and participatory life span services, opportunities and supports that increase the quality of life for those impacted with autism spectrum disorders and co-occurring conditions, such as mental health diagnosis and special health care needs.
Carol Schoder Kotas	I think more information should be made available in a comprehensive manner to parents and school systems and adult service providers explaining the many co-occurring conditions that can happen with the ASD population.
Anonymous	Co-occurring conditions in ASD: 1. CAPD or Language Impairment - Please get ASHA to clarify this. 2. Orton-Gillingham reading interventions in conjunction with Fast Forward (by SciLearn): my daughter used both of these interventions over a 3 year period (Fast Forward for CAPD) and Barton Reading (spelling) and both for learning to pronounce multi-syllabic words. Please investigate the neuroplasticity of these interventions. SciLearn has webinars showing neuroplasticity through use of Fast Forward using functional MRI imaging. Possibly, should functional MRI be part of the diagnostic protocal and beginning at what age in order to guide interventions?
Anonymous	co-occuring conditions and treatment, as there appears to be a high level of anxiety associated with this disability.
Anonymous	I think the science behind it still necessitates research (especially where health and co-occurring conditions are concerned) but the biology of why and what does not directly impact or even get disseminated in an understandable or consistent manner to people supporting people with autism to live a healthy, less stressful life.
Tammy G Harrison, Parent of ASD	co-occuring conditions. It would be nice to be able to identify the breakdown of what is happening and why and know what angle in which to approach.
Anonymous	Many of my students have significant mental health and co-occuring medical concerns.
Cheryl	Co-occurring conditions
Matthew Carey, Autism Parent	There are very many topics that are incredibly important here. Sometimes we need to focus on a few topics to make them stand out, so here I will emphasize only 2. First is autism and epilepsy. On my first day as a member to the IACC I stated that I wanted to see more emphasis on this link. I ask you to help me make that hope come true. The second topic is nonverbal and minimally verbal autism. About 10% of autistics are nonverbal. About another 20-30% are limited in speech or minimally verbal. And, yet, the current Plan has very little emphasis on this population. I remember pointing out the very limited funding provided to research in this area and being told that there was actually more spent than the Plan recommended. The Plan must call for more here. We are severely failing this large segment of our community. The Plan should include objectives in these areas: 1) Explore the physiology to understand why autistic brains are more likely to have siezures. 2) Many autistics develop epilepsy in adolescence. Can we find a way to predict who will develop epilepsy and can we find strategies to reduce the chances of developing epilepsy. 3) Nonverbal and minimally verbal autism in general. 4) Intelligence in non or minimally verbal autistics. 5) Supports for older non or minimally verbal autistics. 6) Strategies for teaching language (verbal or other) to older non and minimally verbal autistics.
Angie Calhoun, Mecklenburg County Pubic Schools	I'm not too familiar with this area, but am very fascinated by it. We need more EDUCATION on the co-occurring conditions in ASD for better diagnosis and treatment options.
Beth Malow, Vanderbilt University Medical Center	co-occurring conditions in ASD-- these may provide a window for understanding the underlying types of autism (endophenotypes)
Gilda M Sanchez	Co-occurring issues of ASD which need treatment now: Aggression Rage Self-Injurious Behavior.
Barbara S. Delsack, MCPS; CCS, Inc.;Independent consultant	Co-occurring conditions- Only by gathering scientific support of the motor differences, neurological wiring differences, occurrences of anxiety, depression and PTSD, as well as the seizure connection (60% of all adults with autism have some type of seizure disorders) will we be able to directly influence the teaching and psychological and academic testing of those with ASD and figure out the strategies and tools to promote more success and more independence.
Julie Cadman, Healing Complex Kids	Co-occurring conditions for autism needs to be addressed in a manner that will help more families. Too often doctors are not continuing to investigate and try to figure out what is causing pain, etc. to a child with autism. Instead they tend to focus on the autism.
Anonymous	The connection between autism and epilepsy needs to be studied and discussed more in my humble opinion. There is not enough out there giving warning signs to parents or caregivers before a full fledged epileptic seizure occurs.
Anonymous, Autism Society of America	These comments are being submitted on behalf of the Autism Society of America. While, much progress has been made in studying the core deficits of autism and co-occurring issues with ASD, including, sleep disorders, attention deficit hyperactivity disorder and other psychiatric comorbidies we still have a long way to go. A recent epidemiological studies have suggested that nearly three out of every four individuals with ASD meet the criteria for another (comorbid) mental health disorder. We believe that often time's co-occurring are often overlooked in the ASD population. Often having, negative consequences on quality of life, family and access to appropriate treatment. It is imperative that we look at both the barriers and factors which may increase the risk of co-occurring in individuals with ASD. It is critical to understand why individuals with ASD are often under diagnosed and therefore go untreated. Professionals face many challenges in making an accurate diagnosis of psychiatric conditions among individuals with ASD. We need to provide training and education to families, community and individuals about mental health and ASD and find the expertise in our community who can participate in the assessment and education of appropriate treatments and interventions.
Debra Janison, parent	My son was born with Down syndrome. It wasn't until he was 6 that we had a confirmed diagnosis that he was also on the autism spectrum. There needs to be research funding to better understand co-occurring Down syndrome and ASD.
Charlene Williams	Co occurring conditions. My son was diagnosed ASD but there were other issues with ADD and anxiety which were present but never formally diagnosed.
Rebecca Davis , Pediatric CVI Society and parent	As I stated in question 1, we need studies on children who have dual diagnoses of Autism and Cortical Visual Impairment. As a parent of a child with both diagnoses, I see that educational strategies for each diagnosis conflict with each other. I am aware of other children who received a diagnosis of Autism until they saw a specialist in CVI and received that diagnosis. More needs to be learned about these two conditions.
Anonymous	How can we diagnose affective disorders in people with low-IQ / nonverbal ASD?
Beth Thompson, Milestones Autism Resources	Co-occurring conditions with ASD
Anonymous	Co-occurring conditions in ASD.

Need more developmental biology research

Respondent	Response
Jennifer Muyot	more research geared towards understanding or diagnosing ASD in prenatal stage
Anonymous	developmental biology
Julia Biagiarelli, Easterseals	developmental biology
Anonymous	Developmental biology
Stephanie Dahl, parent (2 children w/ ASD)	Developmental biology. What factors are involved in increasing the risk or preventing the risk of a child being born with an ASD syndrome
Paula Taylor	Biology
Maureen Durkin, University of Wisconsin-Madison	Understanding the full range of effects of social, chemical and other environmental exposures on the developing nervous system.
Angie Calhoun, Mecklenburg County Pubic Schools	I'd love to have more research on the biology of ASD so we can differentiate ASD with plain poor parenting...
Alexander Frazier, Director, Autistic Reality	The most important priority is to understand that autism is not a problem, but a form of biological diversity.
Anonymous	I do not believe there is one thing that causes autism. I believe there are many factors (genetics, environment, vaccines) that all add up to cause autism. Developmental biology seems pretty important.

Current priorities are appropriate (molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD)

Respondent	Response
cindy, parent	ALL OF THE ABOVE ARE GREAT, BUT RESEARCH SHOULD BE DONE ON ASSISTING THEM NOW
Holly, Occupational therapist	I think all of the areas are of priority. Being that autism has an unknown cause that all aspects of the disease should be researched so society can know it's cause and possible preventable strategies. It's impossible to identify which one has a priority over the others because each aspect that is researched is going to provide more information in order to come to a definite conclusion of why autism has such a high prevalence in this day in age.
Julie Johnson Coulter, CoulterWorks	I'm not a scientist but these topics are all very important. As a parent, I always felt like we were burning daylight while searching for answers and support. So much of the support needed to happen at schools and if funding isn't there, then children suffer. Please work on coordinating health care and educational support. For example, our son could not get therapy paid for by medical insurance as developmental delay was considered "not treatable".
Linda Austin	I feel that all of the areas of research are important and the U.S.A. needs to get cot up. England has a great program and they seem to understand a lot more then our county does.
Roger Kulp	All of the above.
Sheila Stauffer	Once again research should entail all factors to better understand and also policies should be looked into for welfare of students graduating H.S. and in court cases.
Wendy	All of the above.
Anonymous	they are all important.
Ann Hart	I hope that we can reach a better understanding of the biology so that treatment and medication can be individualized better. The trial and error approach to find the right combination of prescriptions is hard on both individuals with ASD and their parents.
Anonymous	I would say all
Betsy Cohick, IU 13/parent of adult son with autism/ID	Please continue to support research
elaine nelson, young adult son with autism	all
Anonymous	I feel like all of these things need to be discussed more, because I don't understand anything about it.
Anonymous	More monies for research!
Anonymous	They are all very important. Not just one specific topic.
Anonymous	Funding for research is key to progress in identifying and understanding the caused for ASD.
Jennifer Furlow, Autism Mom-Warrior	Everything mentioned in the question needs to be addressed and funded further. The most important development for immediate action would be the at-birth-blood-screen. These babies need special help from birth to minimize or delay a potential on-set of ASD. EARLY INTERVENTION MUST START AT BIRTH for genetically vulnerable infants.
ODESSA	Policy changes, research
Tammy	All of the above are important to understand more.
Teresa McCroskey, parent	I feel there are several issues. One is that research is behind on this disorder. I would love to know what causes it, because I know several Autistic people and each seems to have a different level of Autism. Some has cognitive issues some has cognitive and behavioral, others seems to be genetic, others seems to have all of the above. My concern is what is causing the defects in the child or person that causes ASD, is it that the parents have a genetic disorder, or is it that the parents had abuse problems of alcohol and drugs, or maybe all of the above. I have also seen that all of the people with Autistic issues have developmental issues. I think research and the policies need restructure along with the gaps fixed.
Laura Cichoracki	parent of a teenager with autism Finding the cause of autism is important in case it is preventable. However, this research must not eclipse services to those already diagnosed. I feel that all topics listed above require further investigation.
Linda Tortorelli	Yes please - much, much, much more all of these areas. I can't just pick one from this list. They are all very important.
Melanie Pucino	We should not discount any given field, I believe genetics play a part. The more research on any of these given fields would help. Doctors need to be aware that girls react differently than boys
Kristen and Brian Festa	These questions are critical. Please consult Dr. Robert Naviaux at UC San Diego and help fund his research into the cell danger response in autism. Please help fund a multi-center clinical trial to investigate the use of suramin as a treatment for ASD. Please consult Dr. Richard Frye at Arkansas Children's Hospital. Please help fund his research into mitochondrial dysfunction, folate receptor autoimmunity and gut-brain connections in ASD.
Anonymous	All of the above!
Susan bernard	It doesn't matter to what gene the location is but since autism spectrum covers such a varied range it would be nice to see all areas covered equally
Anonymous	All of this research is important. I don't know where they get there input from we have never been asked any questions related to any of these topics.
Patrick Johnson, American Academy of Pediatrics	AAP believes that while there have been significant advances in research concerning the biological and chemical mechanisms that lead to ASD, there is still much to learn. The AAP is pleased that the Strategic Plan mentions brain imaging, epidemiologic studies, environmental exposures, pharmaceutical exposures, and gene expression as potential mechanisms for ASD. The AAP would like to see examples of epigenetic pathways leading to gross morphologic changes, in order to translate the biochemical research into practical, clinical conclusions. Additionally, while the Strategic Plan refers to groundbreaking brain mapping and imaging research, it should also focus on changes at the cellular level in order to better understand how neuronal transformations result in increased susceptibility to ASD. Finally, we would like to see the inclusion of evidence that supports the universal use of whole exome sequencing in children diagnosed with ASD, or evidence of other genetic tests that may be more appropriate.
Anonymous	All of the above are needed
Anonymous	I think ALL are important for research priorities

Understanding the biology of ASD is not a priority relative to other areas (i.e. treatment and services)

Respondent	Response
Alanna	None of them. Those are all used to prevent autism not accommodate autistic people. We'd rather be accepted than eradicated thanks. How can I understand what's happening? By reading blog posts written by other autistic people because they're the only ones who can explain it right.
Sharon, 501-c-3 Momma	Research priorities are always at top of spending list and I guess that is necessary evil but for my twins and our lives were in it up to our eyeballs and research seems somewhat over the top and bit reckless regarding project and spending more monies and focus in tangible services not resources not awareness employment/training/life skills/community settings/workshops on budgets/finances/safety on traffic/water/fire/police/sexual predators real life every day issues Parents face not organizations not 501-c-3 not politicans PARENTS
Anonymous	Again. Research is great, but it doesn't help those that have grown up while waiting for the awareness to catch up. Help teens and young adults with appropriate therapies geared toward those who didn't have interventions available to them at an early age.
Michael Waddell, Saint Mary's College of Notre Dame, IN	None of these should be priorities in government spending. However, inasmuch as the government chooses to continue to support these endeavors, the study of sex differences offers the greatest opportunity for making a difference in assessment, diagnosis, and accessing services for people on the spectrum, especially women.
Marty Weiner	Again, not a top priority. I feel that, in general, entirely too many dollars are spent on "research" and trying to find "the cause"---it is apparent that there are many factors involved--quite frankly, I don't care what causes ASD, only how to deal with it once it has been identified.
Parvati	I think this area is also overfunded. of these topics, co-occurring conditions and metabolic aspects are more of a priority.
Pamela Blankenship, Parent/Grandparent of children with ASD	Because I tend to believe that autism is "a way of being human" I'm not particularly interested in the biology aspect. Of course, families of persons severely affected by ASD naturally DO have concerns, and I do respect that. For a time, my family suspected that a genetic variation (pericentric inversion of chromosome # 20) might be responsible for autism in our family. However, my grandson does NOT have this particular variation, or any other genetic difference that accounts for his autism.
Alanna	None of them. Those are all used to prevent autism not accommodate autistic people. We'd rather be accepted than eradicated thanks. How can I understand what's happening? By reading blog posts written by other autistic people because they're the only ones who can explain it right.
Sharon, 501-c-3 Momma	Research priorities are always at top of spending list and I guess that is necessary evil but for my twins and our lives were in it up to our eyeballs and research seems somewhat over the top and bit reckless regarding project and spending more monies and focus in tangible services not resources not awareness employment/training/life skills/community settings/workshops on budgets/finances/safety on traffic/water/fire/police/sexual predators real life every day issues Parents face not organizations not 501-c-3 not politicans PARENTS
Anonymous	Again. Research is great, but it doesn't help those that have grown up while waiting for the awareness to catch up. Help teens and young adults with appropriate therapies geared toward those who didn't have interventions available to them at an early age.
Michael Waddell, Saint Mary's College of Notre Dame, IN	None of these should be priorities in government spending. However, inasmuch as the government chooses to continue to support these endeavors, the study of sex differences offers the greatest opportunity for making a difference in assessment, diagnosis, and accessing services for people on the spectrum, especially women.
Marty Weiner	Again, not a top priority. I feel that, in general, entirely too many dollars are spent on "research" and trying to find "the cause"---it is apparent that there are many factors involved--quite frankly, I don't care what causes ASD, only how to deal with it once it has been identified.
Parvati	I think this area is also overfunded. of these topics, co-occurring conditions and metabolic aspects are more of a priority.
Pamela Blankenship, Parent/Grandparent of children with ASD	Because I tend to believe that autism is "a way of being human" I'm not particularly interested in the biology aspect. Of course, families of persons severely affected by ASD naturally DO have concerns, and I do respect that. For a time, my family suspected that a genetic variation (pericentric inversion of chromosome # 20) might be responsible for autism in our family. However, my grandson does NOT have this particular variation, or any other genetic difference that accounts for his autism.
Anonymous	Research and science is a waste of time and money -- accept autistic people as a race and stop discriminating against them
Catherine Milian, Mother/Occupational Therapist	The biology of the human body isn't what most parents are wanting to know about. They are looking for a cure. The problem lies when research is provided on certain topics which our government finds more appealing to shed grant money to. Though many Autistic individuals are suffering from mental health issues. The poor data of using anti psych drugs over time is also something no one ever talks about. Medication isn't the only solution for children/adults on the spectrum with behaviors. Though many on the spectrum are found to have adjacent diagnosis' of anti-inflammatory diseases or worst Cancer. Though how can we really know when a non verbal person is truly sick or ill?
Margaret Woch	The research is only important as to the search for better Living and learning tools, or medications. Identifying the genes of ASD will simply only lead to the demise of many human beings before they even get a chance to take a breath.
Jeanne Fitzgerald	There are no co-occurring conditions in ASD because there is no such thing as ASD. The child's chronic infections combined with other factors such as heavy metals and parasites are causing all of his symptoms.
Anonymous	For parents, understanding the biology takes a back seat to knowing what to do next.
Shannon Des Roches Rosa, parent	Research into understanding co-occurring conditions is crucial, as is promoting the understanding that treating co-occurring conditions is *not* treating autism. Understanding the mechanisms by which autism manifests is important -- but it is not nearly as important as ensuring that existing autistic people get the supports and accommodations they need. The emphasis and funding of research, proportionately, needs to shift to reflect real and desperately pressing needs: What are the underlying neurological, genetic, cognitive, and/or developmental reasons some autistic people are non-speaking? Why is it that autistic developmental trajectories are so different from non-autistic arcs, and how can we ensure supports reflect that often explosively punctuated developmental progress? Why are the mechanisms behind visual and auditory processing difficulties, and why do they get mistaken for behavioral difficulties? etc.
Allan D. Hollander	There needs to be much more emphasis in autism research on cognitive psychology, in particular focusing on perceptual differences and cognitive styles. Emphasizing sensorimotor differences is especially important because these can be highly disabling, and are perhaps key to understanding the cognitive basis to autism, as well as unifying understanding of many of the co-occuring conditions. Moreover, these provide many avenues for solid quantitative research (see e.g. E.B. Torres et al. 2013, Autism: the micro-movement perspective. Frontiers in Integrative Neuroscience 7(32) 13-36) Conversely, the current emphasis in research on molecular biology and genomics seems extremely reductive, neglecting that cognition is an extraordinarily tiered phenomenon, and that sociality occurs at the upper tiers of it. For instance, naturalistic studies of how autistic people actually engage socially may offer better clues towards effective therapies than looking for details at the molecular level of neuroscience.
Jennifer Kiney	While the biology is interesting and important, the emphasis should not be here. You aren't going to "cure" autism by spending a lot of time and dollars on biology research, but with each study or paper released, parents and society at large will think you can blame something for it, and want to cure or prevent it, ignoring the more immediate needs of addressing the challenging and utilizing the strengths of each individual.
Kristie Patten Koenig, New York University	What are meaningful outcomes with this line of research? We have to be critical as the largest dollar amounts go to find this line, so the payoff has to be worth it.
Leslie Hollis	This has been the primary focus of all monies spent on ASD. This MUST move down on the priority list
Anonymous	Thus particular area though important to the world at large does nothing to support autistic individuals across the lifespan and their families now. There is a lot of research happening and a lot of money is being invested here. For those of us living with autism or whom have family members who are autistic, large dedicated amounts of money looking at etiology does nothing to support us today. It doesn't create options for communication. It does not improve the quality of lives today.

Need more research and a better understanding of genetic syndromes related to ASD

Respondent	Response
Jan Groh, EDS & MCAS pt, Aspie "cousin", writer	Genetic syndromes related to ASD as described in last question - particularly "hypermobility syndrome" and Hypermobile type EDS and comorbid Mast Cell Activation Diseases (all) among other things (autoimmune disease, leaky gut, IBS, more). Then drill further down and you'll find the RC Complex may be to blame for much that we experience. See RCCX Theory on my blog at http://ohtwist.com
Anonymous	Genetics syndromes r/t ASD including Phelan McDermid Syndrome need increased research funding.
Anonymous	Genetic Syndromes related to ASD
Anonymous	genetic syndromes related to ASD
Anonymous, Downstate U. Hospital Brooklyn	Understanding the clinical pattern of Autism does not depend on the neuroscience as much as the DSM5 criteria so parents need to know the difference between ID and autism clinically
Anonymous	Children tend to have a GI track problems, late potty training, behavioral issues, and enjoy sensory type of activities. Some can't sit still. Some are never potty trained and it affects services and abilities. I would like a behavioral plan/therapy that targets both sensory and biological needs of going to the bathroom. Social skills were really emphasized during treatment, but self control and self help were not. I still do not understand why my child can use the bathroom if I tell her to, but can't at night or at other times. I believe the understanding is there, the use is there but still something is missing.
Jim, Autism outreach fellowship	SIBS SIBS SIBS.
Lydia Schuck, PhD, Parent of young adult with autism, community living services provider, education researcher	Please increase research into the genetics of syndromes which include blindness/visual impairment and autism, such as CHARGE, ONH/SOD, and the effects of premature birth.
Michael Hannon	Among the most important research priorities include genetic syndromes related to ASD and co-occuring conditions in ASD.
Sherri L Kelly	Genetic syndromes associated with ASD. My son has 2 genetic abnormalities that I have passed on to him, but I have no symptoms. Testing is still a major cost although prices have come down considerably. Also, advances in neuroscience can hold out hope for treatment for those with ASD.
Brenda Messex, Parent & Personal Service Worker	Genetic syndromes need more research
Anonymous	Genetic syndromes related to ASD
Jennifer Wade	Genetic syndromes - I believe there is a strong genetic link to autism and it needs to be singled out and explored

Need to prioritize gut-brain interaction research

Respondent	Response
Joseph Clark	Gut- Brain relationships. Behavioral - Immune analysis
parent	There is a book called "Gut and Psychology Syndrome" by Dr. Campbell-McBride. She explains how Autism arises. If her protocol were implemented and funding for it provided by the Federal Government, we would see far less cases of Autism and far fewer severe cases.
Karen Zastrow, Parent	Need research as to the cause of autism. There are similarities with the GI system and autism.
Andrew Gibbs	Research priorities should shift away from the focus on "causes and cures." In recent years, it has become increasingly clear that autism is an inherited genetic condition. Research should instead focus on the efficacy of various forms of treatment and their associated patient outcomes. Research into additional support needed for families should be a priority.
Alisha Gomes, Parent	This is important but for me im curious but its not my main concern
Marsha Salome	Parent to 15yo son diagnosed with autism at 3 Research is fine and necessary but that won't and doesn't help children and their families NOW. We need to address and provide therapy items and opportunities. Hippotherapy, bikes and trikes designed for independence and family outings, memberships to zoos and museums and parks, etc. Monies are not there for these important and necessary social, physical, and behavioral opportunities. Provide opportunities.
Ray	There is too much emphasis on a "cure" for autism and not enough emphasis on services for those that are autistic. Also, what information there is regarding co-morbid disorders and disabilities are not widely shared, so many people do not have access to the information which could be crucial for diagnosing other problems.
Kristen and Brian Festa	These questions are critical. Please consult Dr. Robert Naviaux at UC San Diego and help fund his research into the cell danger response in autism. Please help fund a multi-center clinical trial to investigate the use of suramin as a treatment for ASD. Please consult Dr. Richard Frye at Arkansas Children's Hospital. Please help fund his research into mitochondrial dysfunction, folate receptor autoimmunity and gut-brain connections in ASD.
Andrea Colburn, parent	There is clearly a gut-brain interaction with many kids on the spectrum. Diet and supplements which ease symptoms should be studied by sources not considered "alternative".
Anonymous	Immune and gut issues, as well as sex differences for better diagnosis of girls and women should be priroritized
Anna Frances, autistic 17 year old	The specifics of each autistic person's biology are unique and should be addressed as such, but overall there is the underlying issue of the Leaky Gut, where intestinal permeability (often worsened by gluten, antibiotics, heavy metals and yeast infections) releases toxins into the bloodstream and can cause physical, cognitive and emotional impairments. More information can be found in the book Outsmarting Autism.
Anonymous	When colic and other GI upsets that have traditionally been called 'immature gut' are observed, dietary review and possible changes should be considered...
Anonymous	We know that the microbiome affects our brains....look for solutions to the break down in brain functioning when our guts are unbalanced.
Anonymous, Pittsburgh Center for Autistic Community	1) The influence of the gut (including intestinal flora and nutrition-related topics) on the cognitive and emotional well-being of autistic persons remains unclear.
Anonymous	Vitamin deficiencies and abnormal gut activity are gaps within the research.

Need research to better understand, differentiate, and treat subgroups of people with autism

Respondent	Response
Rose Calloway, GaLEND trainee	Funding provide to those who are more higher functioning.
Anonymous	I can attest to how far and different aspergers/autistic adults can be. We attended our first support meeting for ASD young adults and it was an eye opener on how different each person is and all the same they are. this poses the basic problem of how to care for these young adults. some are employed, some drive, some are married, some can't even look up to talk, most are unemployed in there 20's and 30's.. its quite amazing and quite sad.

Need more research into the contribution of immune and metabolic pathways to autism

Respondent	Response
Frank J Kelly	I strongly recommend the IACC continue the push on the immune-system connection to Autism where in immune system changes in the child (whether driven genetically or environmentally) result in significant changes to white matter, glia and overall synaptic connectivity. Recent work from many labs has shown repeatedly that many children on the spectrum exhibit altered an immune system. Given that we already know so much about the immune system and more importantly how to influence it with currently available pharmacological interventions I would say this counts as "low hanging fruit" (comparatively at least) for increased investigation and funding.
Anonymous	Vaccine research - how it causes autism, and all the cofactors it causes such as seizures, GI issues, etc
John Cullison	The relationship between vaccines and autism. There is no more important research. Quit pretending like there are genetic epidemics. Hire some real geneticists to explain how genetics work, and then drop that silly idea in the trash where it belongs.
Anonymous	Identify autoimmune antibodies in the brain.
Resa Warner, Parent of 15 year old autistic son	Why are you neglecting immunology? Why are you neglecting virology? Why does NIH fund $6 billion for "Aging" and only $200 million on autism?
Seth Bittker	The biochemistry of autism and relatedly metabolomics are crucially important. While there is very often commonality in biochemistry such as: high oxidative stress, decreased levels of sulfate in the blood, and high levels of autoimmunity; few researchers really focus on this biochemistry. A related issue is much of the so called biochemistry research seems to actually be going into genetic research. Genetic research is interesting but the kind which says we found 30 genes associated with autism but we do not have an understanding of the biochemistry underlying those genes is not useful.
Betsy Berman	Immune and metabolic aspects
Cory Gilden, parent	immune and metabolic aspects (many kids with autism have biological issues that lead to behavioral issues; once the biological issues are dealt with, many behavioral issues fade and traditional therapies can have more of an impact)
Autism mom, Autism Society member	It appears that immune and metabolic aspects are hugely important, yet do not receive much focus or support. The hygiene hypothesis is a telling clue as to why so many children now present with ASD symptoms.
Juergen Hahn, Rensselaer Polytechnic Institute	I would consider immune and metabolic aspects the most important research priority for the near/medium term.
Jilene Chivell Griffiths	More information about the immune aspects. And life expectancy.
Anonymous	immune and metabolic aspects
Anonymous	Immune and metabolic aspects
Mary Leathers	Immune and Metabolic Issues are by far the biggest priorities in my mind. I would love to show you my sons medical history and photographs of his health over time. Feel free to contact me
Anonymous	The immunology of autism-understanding why these children have immune dysfunction, stealth/opportunistic infections, and inflammation. More money should be spent on the cellular immunology. Genetics is a dead end. The body up regulates numerous genes when it is ill, and few or none of them are autism-specific.
Anonymous	Immune and metabolic issues
Anonymous	Our son and many like him received test results that showed immunological and metabolic abnormalities. We have never been advised as to the significance of these findings/abnormalities, what follow-up would be useful, how prevalent among the autism population, what further tests would be useful, therapeutics that might be tried, etc. Its like a black hole
Tara McMillan	Metabolic aspects-- how a child can get better ( they can and do ) and model that so others can get better
Anonymous	More research needs to look at the toxic load of both children with ASD and their parents. When immune systems are taxed and inflammation is high, sever behaviors and anxiety increase. It would be nice to see appropriate data to support the mass volumes of people who are seeing this correlation.
Crystal Reuter	Immune and metabolic aspects and then sex differences.
Anonymous	Immune and metabolic issues seem important given how many people with ASD have health issues.
Catherine Camp Boyle, Autism Housing Pathways	The interrelationship of immune issues, metabolic issues, and environmental exposures is of grave concern. Particularly, these may lead to a more severe phenotype. While the genetics of autism may not have changed over time, it is certainly plausible that its presentation may have changed due to a wider range of environmental exposures and possible synergistic effects of those exposures. Another issue of concern is movement disorders in ASD, including autistic catatonia presenting in adolescence and young adulthood.
Anonymous	Whereas there are some genetic causes of Autism, I believe we will eventually come to find that much of the condition we call Autism today, will turn out to be more of an autoimmune condition. I believe that much of the current rates of Autism are due to a combination of environmentally impacted genetic components (creating a predisposition towards developmental differences) and weakened immune systems of both mother and child. If we can put research dollars into finding out which groups of individuals are most compromised (in both immune systems and genetics), then perhaps something can be done to beef up the individuals immune systems prior to challenging those immune systems that are not yet able to properly take on the challenge of immunizations. I also believe this will be the answer to a myriad of other autoimmune and neurological conditions that have skyrocketed in recent years. Research into the maternal immune system could shed much light into how compromised an infant will be upon birth. A maternal overgrowth of Candida yeast might alter the mother's ability to pass along important components of the immune system to her gestating child.
Kerry Lane, Palm Beach Autism Institute	Gliotoxin, the fungal toxin found in many disease states, is known to deplete glutathione. It is also a profound immunosuppressive agent.
Chanda Jackson	Immune and metabolic aspect.
Stephen Holtsbery	Sex difference research is high priority. Co-occuring conditions is very common. Genetic and immune aspects remain not explained well enough.
Toril H. Jelter MD, MDI Wellness Center	EMR / electromagnetic exposure also called non-ionizing radiation can contribute negatively in all these areas causing chromosomal abnormalities, cognitive and behavioral problems, immune problems, seizures and much more see info. by Dr. Martha Herbert and Cindy Sage
Anonymous	More screening differential between known genetic disorders that present with autism symptoms but are a function of the genetic disorder. More research into immune and metabolic panels in regards to behavioral aspects.
Angelique Higgins, parent	Perform prospective studies of children with family history of autoimmune disorders and MTHFR gene mutations along with other immune-related genes/class II alleles that are immune/metabolism related, especially with regard to vaccination. Track post-natal epigenetic changes and autoimmune markers pre- and post-vaccination for each round of vaccines, up until school entry. Correlate with diagnoses of autism, ADD/ADHD, GI disease, diabetes, seizure disorders. Study for abnormal immune response to vaccination such as refractory response (no immunity) or hyper-response (abnormally high titers), correlate with developmental problems.
Idil Abdull	I think we need to find out why some kids have more immune and metabolic issues than others. Are there environmental factors associated with this?
Anonymous	Immune aspects in ASD
Laura Cellini	1. Biomarkers and other conditions for susceptibility; Identification of MTHFR mutations; MtDNA mutations and deletions; mitochondrial dysfunction and GI disease; metabolic disturbances; toxicant exposure and genetic vulnerabilities; immune dysfunction (frequent URIs, ear infections, eczema, asthma, altered T cell function, frequent antibiotic use and altered lymphocyte profile); seizure disorder and allergies.
Wendy Fournier, National Autism Association	Upon diagnosis, thorough medical screening should be conducted to identify and immediately begin treatment of common medical co-morbidities in individuals with autism. These include GI issues, sleep disorders, seizures, food sensitivities, immune system, mitochondrial and metabolic disorders.
Anonymous	MEDICAL testing' not only the standard genetic panels, and EEG's, and MRIs, but also testing for gastrointestinal dysfunction, and neuro-immune dysfunction, and autoimmunity. Children with symptoms of regression, and loss of language, need to be very carefully evaluated. These child
Anonymous	As a celiac parent of 2 now-adult sons --1 with celiac (an autoimmune disease with genetic vulnerability triggered by environmental experience) and an autoimmune blood disorder at 24 months; the other with a diagnosis of PDD-NOS -- believe study of 'autoimmunity' and 'autism' warrants additional study (beyond the documented increased history of mothers with autoimmune disease.)
Anonymous	Genetic syndromes, immune and metabolic aspects.
Anonymous	Immune metabolic
Mary Nally	Immune and metabolic aspects

Need more research on the molecular biology of ASD

Included within Multiple Themes Addressed

Need more research on the basic neuroscience of ASD

Respondent	Response
Anonymous	How on earth is there not a master database of common symptoms. When my son gets a fever his verbal goes thru the roof. why??? are others experiencing this. More research is a must. What is causing autism, and how to prevent. I believe much dollars should be put into neuroscience.
Nina Boal	Neuroscience to try and identify the causes of autism
Anonymous	I believe a gap to exist within the studies and research of neuroscience. I believe that a contributing factor to the Autism spectrum has to do with a short circuit of the brain during early childhood, due to over stimulation of electrical impulses in the brain from outside sources in the child’s environment. These outside sources mainly being items or products which produce bright lights, which when watched by the child, possibly produces an overabundance of electrical impulses within the developing mind, causing a short circuit to the child’s brain. It is my sincere wish to see research and a study on this theory.
Harriet Austin	More research on the brain's repair mechanisms could provide a pathway for biological treatment or gene therapy. Eric Courchesne has done some of this research, but more needs to be done. Understanding the biological mechanisms underlying autism could also lead to better treatments.
Danny Raede, Asperger Experts	Neuroscience
Grace Gengoux, Stanford University	Neuroscience of response to behavioral treatment (identifying aspects of Brian function which are plastic can inform underlying biology)
Anonymous	I feel that more research should be done into the neuroscience of autism. By building a better understanding of how a brain with autism differs from a neurotypical brain, we can continue to develop and implement effective interventions.
Anonymous	From my own readings and trying to stay on top of research, it sounds like we need to continue and further support neuro-imaging studies, especially for diagnosis of ASD. This area seems key to more effectively, quickly, and accurately diagnosis ASD. It also can potentially clue us in to better/more affective therapies to give those on the spectrum tools for working within a neurotypical world.
Rhonda, parent of Asperger's child	Identifying differences between High functioning autistic individuals and "normals" seems to require part neuroscience, as it has to do with neonatal development as well as endocrine-specific issues. You will find differences in the diet and medical care they require. Food sensitivities and reactions to medications often differ from those who aren't on the spectrum. Co-occurring differences may actually reflect the slow break down of a highly stressed system. Polluted air and water, too much noise or commotion, man-made food additives, too much of anything easily overwhelms his system. The simpler his environment and intake, the better he functions. Both his physical and mental health symptoms increase as his balance is disrupted. Perhaps high functioning autistic individuals haven't increased in number, maybe it's just a reflection of the difficulty in finding a place to live / work and diet that allows them to function in an ever increasing population?
Anonymous	Neurosciences in my opinion is the most important research topic. Understanding the changes that occur in the brains of children with autism will help develop better therapies and maybe one day a cure.
Cheryl Eng	I think the biggest help would be more research into how the autistic brain functions and how it redirects neural pathways to compensate for areas that are blocked or lacking. I feel it would help more with finding useful treatments.
Anonymous	Neuroscience.
Kristen Brown, Parent of two ASD sons	Overall, there needs to be a shift in perspective towards Autism as evolution not an epidemic. Exploration in neuroscience will validate this comment.
Anonymous	Neuroscience studies showing relationships with weaknesses in areas of social language with individuals with ASD.
Paul Raich	I think neuroscience would be the most beneficial to children with Autism.
Daphane Voltz, Advocate	consider researching the brain functions and behaviors of parents after a child is diagnosed. It could help families realize autism for many families doesn't have to be devastating, and that perhaps parents can begin to recognize and accept their child's neurodiversity, as well as their own. This could help relationships in families, and potentially empower parents to advocate more.
Jenny Latham	Behavior Environment Neuroscience
Wendy Fournier, National Autism Association	Upon diagnosis, thorough medical screening should be conducted to identify and immediately begin treatment of common medical co-morbidities in individuals with autism. These include GI issues, sleep disorders, seizures, food sensitivities, immune system, mitochondrial and metabolic disorders.

Need more research to better understand sensory processing and motor function in ASD

Respondent	Response
Clarissa Kripke, MD, University of California, San Francisco	Health status of adults with ASD and social determinants of health. Movement disorders in ASD.
Randy Krause, Parent of 34 year old son with Autism	Information and awareness regarding sound sensitivities, the associated avoidance behaviors, and possible long term effects of exposure to certain sounds,, ie. fire alarm sounds.
Annette Kelly	Find out what is causing the inability to speak/ communicate. So many with Autism would be so much more functional (and happier) if they could communicate their wants and needs.
Elissa, Parent	Role of Sensory dificulties
Karen Connelly, 2 children in the spectrum	In my situation my younger son suffers from Sensory Processing issues. He knows what's going on but cannot stay still enough to get his point across. I wonder if medication may help in these instances?
Alexandrea Van Der Tuin	Disability Advocate and Wellness Coach who's an Aspie too. Sensory Processing Concerns which I recognize would help more then autistics. Especially in the area of digestive concerns, what we smell, and feel tactically. This may or may not help those with MCS as well. (Multiple Chemical Sensitivity) . The goals here should be focused more on required parental and society awareness and parental expectations. Not just preferring them (Parents- for example) to be as chemical reduced as possible. Focus on getting them to obey protocol not just possibly desiring to hear that there is one. Sure the research might help. But, everyone's reactions to us and our needs are far more important when chemicals/scents/fragrances are concerned. As for how the layman can understand stuff. Lead them to my blogs. The RIGHT books. And maybe sometimes your ASD help packets. Among other places.
Katherine Hall, Autism Society of Northern Virginia	The biological mechanisms behind sensory integration issues, motor control difficulties, executive function deficits and co-occurring digestive disorders need further study.
Anonymous	Our child seems to be in constant sensory distress which interferes with his learning and negatively impacts his behavior. These include chronic rashes, headaches, acid reflux.
Catherine Camp Boyle, Autism Housing Pathways	The interrelationship of immune issues, metabolic issues, and environmental exposures is of grave concern. Particularly, these may lead to a more severe phenotype. While the genetics of autism may not have changed over time, it is certainly plausible that its presentation may have changed due to a wider range of environmental exposures and possible synergistic effects of those exposures. Another issue of concern is movement disorders in ASD, including autistic catatonia presenting in adolescence and young adulthood.

Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender

Respondent	Response
Anonymous	Again, speaking back to my prior answer to question 1, sex/gender differences need to be a top research, policy and practice priority. Again, girls and women with ASD behave differently from boys and men with ASD. However, interventions and expectations are completely designed around the male phenotype. For instance, a lot of social skills interventions will revolve around typically male interests, such as trains, math or programming. While I do not believe that girls necessarily have to stick to traditionally female interests; the complete lack of emphasis on the needs of girls and women with ASD in literature and society is glaring. Secondly, I highly recommend that NIMH change the priority name from 'sex differences' to 'gender differences'. There are a lot of people with ASD who are transgender (female to male). Therefore, the language around this topic must be inclusive of diverse gender identities.
Brittany, Adult with Autism	More research that includes more females diagnosed with autism. Also more research on older adults (adults 40+ years in age) so we can see if there is more risk for certain diseases and/or disabilities outside of Autism.
Oliver Wendt, Purdue University	manifestation of autism in females
Anonymous	More priority should be given to studying the possible phenomenon of under diagnosis in girls as opposed to boys. Multiple studies suggest that girls with ASD receive delayed diagnoses because of gender traits and characteristics attributed to something else. Also, if enough members of the scientific community concur that certain environment factors increase the likelihood of autism, public awareness around those factors need to be communicated through public service announcements and wellness campaigns.
Becca Lory	The females and adults on the autism spectrum
Suzannah Iadarola, University of Rochester Medical Center	Sex differences
Heidi Stewart	Sex differences such as why are more males diagnosed with ASD than females
Anonymous	Sex differences
Susan H.	Gender differences, women and girls DO NOT present as little boys do. Have you NOT figured that out yet!
Pamela Oguagha, Parent of young adult with autism	Autism is a spectrum, which means there is a core of behaviors, etc., but people will express them differently. Girls/females have different hormones, so we process differently. We are also taught to Love our sons and raise our daughters, so many of the symptoms are worked through with our girls more than our boys. I once met a young man who had aspergers. He could not speak, but he was BRILLIANT!! I attended a conference, and he lead an outbreak session - with his electronic speaker, about filming/documentaries. Again, he is BRILLIANT, but someone would have written him off because he could not speak and sometimes "flapped" to calm himself. My daughter had the signs/symptoms but was given ADHD, mildly retarded, unable to speak labels. She also has anxiety. What did she really exhibit: AUTISM. She is a female of color!
JLG	Gender differences. The testing as it is currently constructed is boy-centric. I was asked if I love trains. I do not. Maps? Absolutely they're the best! Sports stats? I could care less. Bug names? No! But I know thousands of plant names by family, genus and species. Additionally, Aspie women (and when I grew up, girls as well) are expected to appear more "normal" than our male counterparts. In fact, we are expected to function as primary caretakers despite our poor executive functioning skills. We learn, vis harsh societal criticism and subsequent consequences, to mask our traits in public. We learn to unleash our chatty side if possible, even though it can be fraught. The same people who tell me I "don't seem too autistic" seem to think nothing of taking offense at my direct communication, or jumping 3 steps ahead of what I've just plainly said to try to guess at my "ulterior motive" (I don't have one) and bring the conversation confusingly into some bizarre realm that I'm no longer a part of because its happening inside the suppositions of their imagination. But at home, where I am now an empty-nester, it's a 100% autistic-friendly zone, where I am free to be myself.
Kim Mays, Individual	I as a parent with a daughter who is Asd would like to see more programs addressed for females specifically tweens and when they mature.
Elizabeth	Sex differences. Girls are getting missed. I saw this as a mental health provider.
Jenny Keesee	sex difference. ASD is too often missed in girls.
Meridith Myers, Tanager Place	Identifying ASD in girls, as they demonstrate different symptoms.
Anonymous	Sex differences. I have a daughter with autism and not enough is known about the differences with girls on the spectrum.
Anonymous	I haven't looked into the science behind autism much, but I have seen that sex differences are an issue in autism information. Most symptom lists and articles seem to ignore differences caused by female socialization.
Maureen Durkin, University of Wisconsin-Madison	1. Accuracy of ASD diagnoses among individuals with intellectual, hearing, vision, motor and other disabilities. 2. Reasons underlying observed sex differences in ASD prevalence and characteristics.
Tammy	More focusnon women and girls on the spectrum is needed. For everything from diagnosis to education to inclusion in studies.
Michele Hays	Sex differences are critical, as I believe women and girls are grossly underserved.
Anonymous	Sex differences are a huge issue for me. HF ASD girls need to be identified earlier.
Lisa Downey	neuroscience, developmental biology, sex differences, immune aspects
Alexander Frazier, Director, Autistic Reality	Autistic Reality believes that the biggest key is understanding that autism is not anyone's fault. It is not a preventable condition caused by someone's error, but rather a naturally occurring condition that has existed as long as has humanity. Education on natural forms of diversity including mental health issues is currently lacking, and simply must be improved. People must also learn how to shift the blame for disability away from a fault-based model. Understanding that mental health conditions occur naturally is extremely important. It is also very important to realize that males and females and old and young people can have autism, despite the common misconception that children are mostly affected by autism and that mostly males have autism. Autism may manifest itself slightly differently in females than it does in males. Autism often brings with it other conditions such as Obsessive-Compulsive Disorder (OCD), Bipolar Disorder, and ADD. Once again, it is important to realize that these conditions are not sicknesses or problems, but rather forms of mental diversity, which is called neurodiversity.
Anonymous, Pittsburgh Center for Autistic Community	1) The role of sex in the clinical presentation of autism spectrum disorders (ASD) remains unclear. Numerous studies highlight sex related differences and suggest that ASD may be under-recognized in females. ASD diagnostic criteria may be biassed towards more stereotypically male symptoms. Further research is necessary to better understand the impact of sex and gender on the presentation of ASD. Separate diagnostic criteria or thresholds may need to be considered for different subgroups. 2) It is increasingly hypothesized that sensory differences may underlie the behavioral traits commonly used to identify ASD. Further research to delineate the nature of these differences as well as interventions to more directly address difficulties related to alterations in sensory/information processing are an essential area for further development. 3) Joint Hypermobility and Ehlers-Danlos Syndrome seem to affect a high percentage of the ASD population. There's also a high prevalence of epilepsy and seizure disorders in this demographic. Learning about environmental risks for seizures can save lives. 4) A recent Autistica study showed autistic as having such a curtailed life expectancy clearly shows that autistic health paradigms are inadequately understood.
Becca Lory	Sex differences and co-occurring conditions present the biggest challenge for those already living on the spectrum.
Anonymous	Sex differences are very seriously under-researched; some countries' research is not quite as behind as the U.S., but professionals here seem to have no knowledge of it. Both girls and adult women, who can often learn excellent surface coping skills but be unable to notice or communicate other issues, need appropriate screening criteria and tests that work, not male-based ones. Positive aspects of milder autisms need to be quantified, too!
Renee Vogt	I would put cognitive and behavioral biology, sex differences and co- occurring conditions at the top of research.
Stephen Holtsbery	Sex difference research is high priority. Co-occuring conditions is very common. Genetic and immune aspects remain not explained well enough.
April Banerjee, People With Disabilities Foundation	People With Disabilities Foundation (PWDF) recommends that more research be conducted to identify how ASD manifests in girls and women so that females are not denied treatment and services because they are not diagnosed or are misdiagnosed, which could be the case if ASD manifests differently in females than in males. [1] [1] Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research '2013 Update, p. 16. April 2014. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/strategic-plan/2013/index.shtml (last visited Jul. 29, 2016).
Marcia Gray	Much more research and reporting on how this looks in girls needs to happen. Frequently even those providing services seem to be unaware that symptoms look different in girls than boys -and consequently are promoting girls through services as "successes" when in fact they are still in need of intensive therapy.
Anonymous	More research on why it's more prominent in males than females.

Need more translational and interdisciplinary research to improve the lives of people with ASD

Respondent	Response
Cheryl Fortunatom, Parent	Social Thinking and the impact it has on those with ASD is critical and needs to be part and parcel to all educational programs, not just a related service.
Julie, Mother of 4 year old newly-diagnosed with autism	Lacking a strong understanding of the contributions of each of these fields to the overall trajectory of study, I have minimal opinion on which area deserves the greatest focus. I only stress that I would find research leading to therapies with a significant, rapid ability to improve prospects for healthy, independent futures are the top priority in my mind.
Kristy Barnett	All the research is great. It gives you a baseline; however, will there be a cure for autism? Education policy for students with ASD is important.
Anonymous	We need to develop ways of testing theories for diet, holistic treatments, and sensory input. There is a lot of anecdotal information that may be useful if pursued.
Megan E Sova-Tower	I think it's important to identify conditions and syndromes related to ASD, but then determining/researching HOW to help those with multiple diagnosis-especially families.
Anonymous	Purposeful research. Priorities can focus more on the practical application of findings. Perhaps starting with how current findings have impacted those dx with autism. Less focus on undoing and understanding cause and more on purposeful education. Incorporate people dx with autism into their own studies.
Shannon, Mom to 3 boys with autism.	Whatever leads to affordable, accessible treatments. I don't believe it can be cured. If pesticides or something environmental is causing it take steps to stop national exposure to those chemicals.
Angela Lello, Autism Speaks	There is still much that is unknown about the biology of autism. Genetic studies have provided a long list of genes that we know are involved in autism, but it is unknown what role these genes play in development of the brain or how changes in their function may alter brain circuitry. These are understudied, but important areas. One of the main priorities of the strategic plan should be focusing on research to better understand how co-occurring medical conditions impact functioning and outcomes in ASD, specifically GI, sleep and seizures. A better understanding is needed on the trajectory and outcomes of individuals with ASD and co-occurring conditions. Focus should also remain on last year's objectives. Another priority should be a better understanding of the genesis of challenging behaviors, wandering and elopement behaviors, etc. Since most families engage in more than one type of intervention/treatment, more emphasis should also be given to better understanding the benefits and risks of combining different treatments, including medicine and behavioral intervention. There is a limited recognition of the different forms of autism and consideration of all forms of ASD as a single population, which should be addressed. More translational research is needed, e.g. a number of genetic mouse and rat models of autism have become available in recent years but investment is needed to characterize these animals to gain the necessary insight into the biology of autism that is missing.

Multiple Themes Addressed

Respondent	Response
stella avcisoy, ARC of Seneca Cayuga	I consider one of the most important research priorities to be molecular biology and neuroscience. We desperately need to understand exactly why, how and where the origins of ASD begin. Themes Addressed: Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Anonymous	We need more neuroscience/cognitive science research. Also, focus on immune issues and PANDAs type problems which occur in individuals with autism. Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the basic neuroscience of ASD.
AMINAH LUCIO, YONKERS PUBLIC SCHOOLS	immune and metabolic aspects, and co-occurring conditions in ASD. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research into the contribution of immune and metabolic pathways to autism.
Dena Gassner, Arc US/ ASA	1. Sex differences (cautious not to specify this as a gender issue but a failure to conceptualize the breadth of the spectrum). Some women present with a lot of externalized behavior and some men present with a more internalized presentation and both ends of the spectrum are missed. 2. Medication interactions 3. Misdiagnosis and ensuing maltreatment 4. Lack of support for autistic mothers and fathers addressing of co-occurring depression/anxiety/eating disorders/non-suicidal self-injurious behavior/ suicidal ideation/ disparities and gaps in accessing healthcare Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender.
Anonymous	Neuroscience, cognitive and behavioral biology. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the basic neuroscience of ASD.
Anonymous	More research needed on the gender differences in autism - to enable better detection/diagnosis in girls. Also more research into co-occurring mental health conditions. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender.
Cinda Walchli	Molecular biology and neuroscience seem to be the biggest focus - brain abnormalities which may or may not have genetic markers. If the focus of research is on cause and treatment. Themes Addressed: Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Danielle Oakes Mrs.	molecular biology and neuroscience, cognitive and behavior biology, immune and metabolic aspects Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Ana Dueñas, Michigan State University	Molecular biology and neuroscience Themes Addressed: Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Dwight Zahringer	Developmental biology for cognitive and behaviors; need better protocols for testing done on children to look at all factors to consider that could be contributing. Themes Addressed: Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptoms; Need more developmental biology research.
Anonymous	I would consider that neuroscience, cognitive and behavioral biology and comorbid diagnosis extremely relevant research topics. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on the basic neuroscience of ASD.
Anonymous	Developmental biology as well as molecular biology and neuroscience. I also believe there need to be environmental studies focusing on the impact of foods on development. Our food sources have become very processed and the impact on neurology must be considered. Themes Addressed: Need more developmental biology research; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Anonymous	All of it? For me personally, I'm curious about genetics since we just found out that my son has a deletion of part of chromosome 16...could this lead one day to earlier diagnosis, will gene therapy be possible one day? Immune changes and co-occurring conditions also top my list. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research into the contribution of immune and metabolic pathways to autism.
Vince	Molecular biology & immune aspects. Detoxification is clearly an issue for most ASD kids - the more we understand about this, the better we can help our kids. How about more research into the gut/brain connection - guy problems are clearly at play for most ASD kids. Themes Addressed: Need to prioritize gut-brain interaction research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the molecular biology of ASD.
Anonymous	Molecular biology and neuroscience as a research priority; also policies to support services for persons with co-occurring conditions. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Leslie Pirelli	I believe molecular and neuroscience are important to hopefully determine cause and with neuroscience determine successful interventions. I believe the disability is within the neurological system and occurs during molecular development within the womb. Themes Addressed: Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Kelly Ison	All of these are huge. Co-occurring conditions in ASD are a big concern because they can cause so many other symptoms and problems in people with ASD. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Current priorities are appropriate (molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD).
Anonymous	Neuroscience and developmental biology to determine causes. Also genetic syndromes related to ASD. So many with ASD have seizure disorders and ADHD. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASDNeed more developmental biology researchNeed more research and a better understanding of genetic syndromes related to ASDNeed more research on the basic neuroscience of ASD
Jennifer St. Cyr, WithinReach	sex differences and co-occurring conditions Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASDNeed more research on sex and gender differences, inclusive of both biological sex and self-identified gender
R.Walker	Co-occuring conditions---rubric, at least looking more into complexity, and what ~should~ be considered when label given--80% are atypical learners!!! Immune and Metabolic aspects---look for commonalities in child, and reaction to vaccines as indicator of possible problems. Should be a neurological workup of some sort, some type of testing for HHE' reactions, Febrile Seizures, and whether autistic kids MORE likely to have reaction and why. Should all kids given label have immune and metabolic workups? IDK... Developmental Biology (differentiated to autistic development)---Look for commonalities among "High" and "Low" functioning. They are there!! Genetic Syndromes (not necessarily to study more, but how those conditions we already know can be cheaply looked for...ie, making genetic testing more affordable. I wonder how many kids have never been tested?Might be important re:future problems. Molecular Bio & Neuroscience---seems to be in infancy. No appropriate "therapies" so far. But has capacity to be life-changing. Gets more funding than output might qualify. Got to pay for those machines! Sex differences--male or female, autism is autism. Cognitive and Behavioral Biology. I don't understand why this is considered biological. Seems more Psychological and Educational to me. Behavioral Science has made enough errors. Give it a rest. Research Priorities: Fetal Immune System Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more developmental biology research; Need more research and a better understanding of genetic syndromes related to ASD; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the basic neuroscience of ASD.
JulieKay Dudley, Autism Society of Oregon	More research on brain development and the specific areas effecting Autism. Genetic identifiers need to be explored more. Co-morbid diagnoses, such as anxiety and Sensory processing issues need to be more fully explored as to their and how it is manifested in those with ASD. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the biology and relationship of co-occurring conditions in ASD; Need more developmental biology research.
Julie Long, parent of child on spectrum	Molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, immune and metabolic aspects, and co-occurring conditions in ASD should be higher priority. Genetic syndromes related to ASD, sex differences lower priority. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Kimberly Richards, Parent caregiver	Cognitive and behavioral biology. Co-occurring conditions and underlying medical conditions causing certain behaviors. Understanding cognitive function in nonverbal individuals. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD; Need research to better understand, differentiate, and treat subgroups of people with autism.
Kathy Wilcox ACCES-VR	I do not believe there has been enough research regarding sex differences with ASD. There is growing evidence that females on the spectrum do not share all of the typical traits of their male ASD peers and that their needs, challenges, and strengths are very different; there is also some evidence that they may be underdiagnosed due to being better able to "blend" into neurotypical society. I also feel that research is needed to better understand immune and metabolic aspects which can contribute to ASD symptoms and, if addressed, may offer hope for better outcomes. Research should address conditions which are commonly considered comorbid with ASD (i.e. digestive disturbances, ADHD, anxiety) and whether these are part of the ASD features or warrant separate diagnosis. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender.
Katrina Ostmeyer-Kountzman, Integrated Behavioral Technologies, Inc.	1. There is still a lot of unknowns regarding syndromes related to ASD. 2. The difference in presentation and treatment for female versus males with the disorder, especially high-functioning females. 3. Treatment of co-occuring diagnoses that frequently occur in the aging population and effective treatments. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research and a better understanding of genetic syndromes related to ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender.
Karen McHale	I think the most important research priorities should be on helping people with ASD to manage autism and to function in a neurotypical world. I also believe that we need to focus research on the differences of ASD in males and females, as females tend to be overlooked. Most ASD research is focused on male behavior. Co-occurring conditions is also a very important aspect of research. People with autism are getting tired of research focusing on a "cure". First, too much money is focused on looking for a "cure", which is insulting to those of us with autism. Many of us don't want to be "cured". Second, a "cure" involves pre-natal genetic screenings, which could lead to large amounts of abortions due to autism. The majority of autistic people live normal, fulfilling lives. Autism is a spectrum disorder, with many on the high end of the spectrum. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender.
kathleen dugan, parent of twins with autism	There needs to be more study on neuroscience and cognitive and behavioral biology. Kids with special needs are punished more than neuro-typicals. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the basic neuroscience of ASD.
Kathleen Quill, Autism Institute	1. increase research on repetitive behaviors; specifically, subtypes of repetitive behavioral profiles and correlation to co-morbid conditions. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need research to better understand, differentiate, and treat subgroups of people with autism.
Anonymous	Focus should be on neurological, developmental and genetic research. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research; Need more research on the basic neuroscience of ASD.
Kristy Powell	Females with ASD. Comorbidities. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender.
Anonymous	neuroscience developmental psychology and biology family coping related disorders and genetic syndromes immune and metobolic sensory related symptoms and behaviors. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more developmental biology research; Need more research and a better understanding of genetic syndromes related to ASD; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the basic neuroscience of ASD; Need more research to better understand sensory processing and motor function in ASD.
Anonymous	I would like to know why it is so common for children with a diagnosis of Autism to have co-morbid conditions such as mental retardation, seizure disorders, asthma and/or allergies, weak immune systems, etc. Why are so many struggling with another common problem: sensory issues (either unresponsive to certain senses or overly sensitive to the stimulation of certain senses)? Is any of it preventable? Can it be pinpointed to a specific cause? Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research to better understand sensory processing and motor function in ASD.
Maggie Halliday	I would like more studies of immune and metabolic aspects. The gut brain connection ,and comorbidities. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need to prioritize gut-brain interaction research; Need more research into the contribution of immune and metabolic pathways to autism.
Anonymous	1. Developmental Biology 2. Cognitive and behavioral biology 1. How is autism developed? In utero? 2. Develop ways to decrease anger and anxiety without strong meds. Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research.
Anonymous	The highest priorities are molecular biology and neuroscience, genetic syndromes related to ASD, and metabolic aspects of ASD. In my experience as an Autism parent and educator, these topics have the most potential to provide research-based interventions and information for those with Autism and those who care for them. Themes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
brandon miller, autistic adult	Sex differences, co-occuring conditions in ASD. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender.
PETER MAZURE, parent	We need to understand the neuroscience of ASD; we also need more information on co-occurring conditions. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on the basic neuroscience of ASD.
Colette Tarrani	Immune and metabolic aspects, Molecular Biology and neuroscience, developmental biology, cognitive and behaviorial biology. Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Sally	The most important research priority to me is targeted treatment to improve the overall quality of life for the individual with ASD and their family. Better understanding of the developmental, behavioral and cognitive biology and associated genetic syndromes related to ASD. The FDA needs to change when it comes to moving treatments through approval especially when the treatment is based on a med that has been available since 1920, with a very good track record that has been tweaked a little. My child was diagnosed with autism but was also given a fragile X diagnosis. We participated in a clinical trial for STX209 which was very successful for my child and due to lack of funding by a private company it was taken away. It was truly a med that created vast improvement, a med based on baclofen, safer and better than many of the meds approved by the FDA, such a Risperdal or Abilify. Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research and a better understanding of genetic syndromes related to ASD.
Shannon D'Aquila, parent	co-occurring conditions are important to give parents the knowledge as to what to possible look for in their child especially the non-verbal children. Behavioral biology should continue to be researched since we know best practice for treatment of autism is behavior therapy. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD.
Anonymous	molecular biology and neuroscience. Themes Addressed: Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Anonymous	Medical schools need to teach what is currently known under all above mentioned topics. Doctors in adult world have no clue about Autism. Young doctors say only pediatricians get information. Neuroscience, genetic factors and co-occurring conditions in ASD are my top 3 important areas on which to spend time and money. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on the basic neuroscience of ASD.
Michelle Wolfson	Immune and metabolic aspects Molecular biology and neuroscience Cognitive and behavioral biology. Themes Addressed: Need more research on cognitive and behavioral biology; Need to prioritize gut-brain interaction research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD.
Anonymous	Genetics. Co-occuring conditions, particularly medical. And prove once and for all that vaccines have no link which the antivax community still insists upon. As a result of the antivax community, many autistics feel less than because the view is that we are damaged which we are not. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the biology and relationship of co-occurring conditions in ASD.
Anonymous	Genetics. Co-occurring disorders in ASD. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the biology and relationship of co-occurring conditions in ASD.
Teri Doolittle, PA-C, MHP, DHSc	All of the above, especially co-occurring conditions in ASD. People with ASD should not be denied support and services for co-occurring conditions based on an ASD diagnosis. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Current priorities are appropriate (molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD).
Cindy Axt	Behavioral biology for sure, and finding common co-occurring conditions. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD.
Anonymous	Exploring the dynamic between digestive system (instinctive gut emotions & 2nd brain) with cognitive brain functions. Also how autonomic nervous system interacts with sympathetic & parasympathetic;and the vagus nerve (polyvagal theory). Has anyone considered the influences of recent changes in culture and demographics? Political correctness movement has contributed to much more complex and hidden communication. Psychology's obsession with self-image and the self-help movement has contributed to lying and self-deception as a major way to cope. Web 2.0 & cell phones is creating new generation of people who lack basic 'in real life' social skills. Advocacy movements have actively used boycotting and aggressive shaming & silencing of specific beliefs and language. These recent cultural changes in the social landscape make it more difficult for autistic people to understand and navigate through. Themes Addressed: Need more research on cognitive and behavioral biology; Need to prioritize gut-brain interaction research
Anonymous	Immune and metabolic aspects and genetics are the most important areas of research to be pursued.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research into the contribution of immune and metabolic pathways to autism
Anonymous	Developmental Biology Co-occurring conditions Themes Addressed: Need more developmental biology research; Need more research on the biology and relationship of co-occurring conditions in ASD
Alexandra Valentine, parent of a young man w/autism	Cognitive and behavior biology, and immune and metabolic aspects are the most important in order we can find successful treatmentsThemes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on cognitive and behavioral biology
allison velarde	The most important research priorities are developmental neurobiology. More and more, we see that the brain and it's development is having a larger impact on behaviors, and social and cognitive development. By having a simplified explanation, parents can be directed to the medical professionals that are currently using the latest treatment protocols. Research to identify the genetic mutations is imperative if we are to develop more effective treatmentsThemes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research
Amanda C Nicolson, California Autism Center	neuroscience and genetics are the most promising areas so far and deserve much more attention. Interaction between behavioral therapy and neurological change is a huge area for changing the lives of those with autism. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the basic neuroscience of ASD; Need more translational and interdisciplinary research to improve the lives of people with ASD
Alice Ospovat	There is a shortage of research about autism in girls, possibly because autistic girls are less likely to have behavioral problems in school that get noted, and because autistic girls are more likely to teach themselves the social skills they are deficient in. More research is needed in this area, and an effort needs to be made to diagnose girls as well as boys. One area that could be studied further, though, is how to distinguish "normal" autism from other disorders that cause autistic traits in addition to other problem, like Rett Syndrome and Fragile X. There may be other syndromes that we're currently lumping together with ASD that are also distinct genetic or environmental disorders, and people with those disorders would benefit from further research in the hopes of finding medical treatments that can help them.Themes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Anonymous	There needs to be a LOT more research into the differences between HFA in boys and HFA in girls. I am fortunate that friends have gone before me, who have done some research into the differences and could point me in the direction of useful books on the subject. Now that I have them, I can see those same traits at work in my own life. Testing for genetic connection, availability of material for further research and understanding, all of things would help identify these kids and keep them in school and focused on becoming fully actuated adults. Girls have enough trouble as it is without excluding them from diagnosis on the basis of gender.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Arzu Forough, Washington Autism Alliance & Advocacy	I consider cognitive and behavioral biology and co-occurring conditions in ASD as areas of science that have not gotten equitable priority and funding. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	immune and metabolic Gastrointestinal and co-occurring conditions regressive autism and mitochondrial diseaseThemes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the biology and relationship of co-occurring conditions in ASD; Need research to better understand, differentiate, and treat subgroups of people with autism
Ellen J Brummel	co-occurring conditions and genetic syndromes seem to be most important here. I have child who is on the spectrum by the way.I would say that 50/50, you should work on causes, immune and metabolic would be the most basic and practicalThemes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research on the biology and relationship of co-occurring conditions in ASD
Carol Bunten MD, The Vancouver Clinic	I suspect developmental biology and genetic differences hold the most promise for further insight into the causes of autism. I am particularly interested in advancing age of parents as a possible explanation for the increasing incidence of this condition. I feel continuing work on the underlying biological mechanisms of disease is important to develop novel treatment strategies, although the heterogeneity of these conditions complicate the work.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research; Need more translational and interdisciplinary research to improve the lives of people with ASD
Nancy Cheak-Zamora, University of Missouri	Neuroscience and co-occurring conditions in ASD. social and behavioral researchThemes Addressed: Need more research on cognitive and behavioral biology; Need more research on the basic neuroscience of ASD; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	Priorities should include various developmental differences that individuals with ASD may experience. Also, any external factors that may contribute to characteristics of ASD should be a topic of consideration. Gaps are noted in the area of co-occurring conditions. Themes Addressed: Need more developmental biology research; Need more research on the biology and relationship of co-occurring conditions in ASD
Cheryl Peeples	There should be NO more money directed at genetics. That has got us nowhere over the years and will get us nowhere in the future. Research into environmental causes would be better. Research into the immune system and the co-occurring conditions is very important.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the biology and relationship of co-occurring conditions in ASD
Chris Lacey, Autism ALERT, Inc.	Immune dysfunction, brain inflammation, gut-brain connection, leaky guy, co-occurring conditions. Let's TREAT existing autism! Also, realize that the treatment for autism will likely be dependent on their subcategory or subgroup of autism. It is unlikely that a "one size fits all" approach will work in this case.Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the biology and relationship of co-occurring conditions in ASD; Need to prioritize gut-brain interaction research
Christy Moore, Parent	1. Like I mentioned before, my daughter has 8p23 deletion syndrome, and is missing 20 genes, including genes that are believed to be associated with ASD. 2. Girls and boys present symptoms of autism very differently. Many "higher functioning" girls are getting overlooked because they are able to mask their social deficits and mimic socially acceptable behaviors. The behaviors are still usually atypical in some way, it just takes a keen eye and a knowledgeable evaluator to catch it and be able to explain how it is atypical to the families. Screening tools need to be developed to catch these "higher functioning" girls so treatment can begin. These girls are often misunderstood by the community, other family members, peers, and teachers because they "look normal" but don't act normal. It destroys these poor girl's self esteem and causes anxiety, depression, eating disorders, and suicidal thoughts/actions, among other issues. I belong to several online support groups for sensory disorders and ASD, and this is a topic that comes up again and again - someone's daughter "can't have autism" because "she has eye contact, appropriately greets people and pretend plays" its seems that all the other indicators are ignored. Often times if you dig deeper, you will find the atypical component - like the child used to hold eye contact too long, they greet strangers with robotic hugs, and their pretend play scenarios are scripted from You Tube videos. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Allie	Genetics and co-occurring conditions such as psychiatric disorders and motor delays Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	Research priorities should include genetics, developmental biology, immune and metabolic aspects, and co-occurring conditions. Genetic testing is unfortunately very expensive!Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the biology and relationship of co-occurring conditions in ASD
Christine Lai	Greater resources need to be allocated to causal research particularly as it dovetails with current research on Alzheimers and other neurological conditions. Co-occurring conditions like anxiety also should receive greater priority in research, as anxiety colors every aspect of a person's experience and behavior.Themes Addressed: Need more research on the basic neuroscience of ASD; Need more research on the biology and relationship of co-occurring conditions in ASD
J. Berryhill, Autism spouse and Parent	Autism is a genetic, biological, neurodevelopmental disorder. It should be studied as such. We should be studying neuroconnectivity in the ASD brain. Autism is not a syndrome and those with ASD do not "suffer" from it, they live with it. Very few in the community believe there could ever be a"cure." We want to understand and help support our loved ones. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the basic neuroscience of ASD
Anonymous	Molecular biology and neuroscience, cognitive and behavioral biology, genetics.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on cognitive and behavioral biology; Need more research on the molecular biology of ASD
Anonymous	The most important research for me would involve co-occurring conditions, but I think everything in the list on this question is highly important and sort of goes hand in hand with each other. The main import to me is that we continue to research this.Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Current priorities are appropriate (molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD)
Anonymous	1. Cognitive and behavioral biology 2. Molecular biology and neuroscienceThemes Addressed: Need more research on cognitive and behavioral biology; Need more research on the molecular biology of ASD
Dean	Just please keep researching. To be sure...genetics plays a part and should hold some answers.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Current priorities are appropriate (molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD)
Delores Goneau	Genetics and Co-occurring conditions need to be brought to the forefront and re evaluated.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the biology and relationship of co-occurring conditions in ASD
Diane	Cognitive and behavioral biology and immune and metabolic aspects.Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on cognitive and behavioral biology
Anonymous	Sex differences are NOT the most important. Perhaps instead look at LGBTQ identity and autism spectrum. Co-occurring conditions would also be interesting to look at, such as anxiety disorders.Themes Addressed: Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the biology and relationship of co-occurring conditions in ASD
Elizabeth O. Morejon, AOTA	Cognitive and behavioral Biology and co-occurring conditionsThemes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Lindsey Craven	SPECT, genetic factors that cause some to develop the symptoms in families and not others. And the key factor of age onset. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research
Gillian Stein	I think the biology of ASD is confusing. For my child, he is physically healthy. We rarely see the doctors and I am grateful for that. I see the following topics as important. 1) Co - occurring conditions in ASD 2) Cognitive and behavioral biology -- on how to educate and test these kids effectively to show their learning 3) Developmental biology - do these kids mature at a different rate than neurotypical peers? 4) Biology- constipation/ eating issues Themes Addressed: Need more developmental biology research; Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	molecular biology and neuroscience co-occurring conditions in ASDThemes Addressed: Need more research on the basic neuroscience of ASD; Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on the molecular biology of ASD
Mariah Hahn, Rensselaer Polytechnic Institute	Again, as a parent of a child with autism and as a biomedical researcher, it is a continual source of anger for me to see where money in autism research is being placed. This situation is all the more concerning given so little money is currently allocated to autism research on a percentage basis of the population affected. At present, most of the funding for autism research appears to focus on genetics, epigenetics, and/or brain connections. Very little research seems to be placed in WHAT WE CAN DO ABOUT IT!!!. I know my son's brain is different, I am certain that epigenetics is involved. The questions we need to address are - what can we do to ameliorate these changes? This means focusing on immune and metabolic aspects of the disease and possibly on sex related differences (in the context of the immune, detoxification differences, and metabolic aspects - given that sex differences may allow us to find treatment targets). It is a disservice to this population of children and adults that so much funding is placed on trying to show that autism is "not a problem/not an epidemic". Rather, we should be asking what we ask for Alzheimer's - WHAT CAN WE DO about it? Admittedly, this requires that fundamental biology questions be asked - but mapping the brain connections is barking up the wrong tree - unless the molecular origins of the aberrant neural connections are investigated.Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more translational and interdisciplinary research to improve the lives of people with ASD
Maranda, Houston Autism Resources & Support (HARS)	Cognitive and behavioral biology are definitely research areas that continue to be needed. The more we learn about these areas will continue to assist us in understanding what interventions and strategies are most effective. Co-occurring conditions in autism spectrum disorder are also very important. I know many parents that found out much later that their autistic child should have also been diagnosed with another disorder or medical condition.Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Heather Baylies-Grigoreas	neuroscience cognition geneticsThemes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the basic neuroscience of ASD
Howard Habler	research priority, in my opinion, would be molecular biology and neuroscience, as I believe ASD in a neurological disorder.Themes Addressed: Need more research on the basic neuroscience of ASD; Need more research on the molecular biology of ASD
Anonymous	Molecular Biology and Neuroscience Sex differencesThemes Addressed: Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the basic neuroscience of ASD; Need more research on the molecular biology of ASD
Irena Koshuk	Neuroscience Genetic syndromes related to ASD Co-occurring conditions in ASD Environmental science related to ASD Developmental biology Themes Addressed: Need more developmental biology research; Need more research and a better understanding of genetic syndromes related to ASD; Need more research on the basic neuroscience of ASD; Need more research on the biology and relationship of co-occurring conditions in ASD
Jacqueline M Ward	Co current conditions and developmental biology Themes Addressed: Need more developmental biology research; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	Co-occurring conditions in ASD (which may include immune and metabolic aspects). Additionally, cognitive and behavioral biology for adults with autism is important consideration. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	I believe more research needs to be conducted to determine how individuals with ASD's learn and how their brain is functioning when they are engaged in various activities that promote their increased socialization and behavioral development. Neurological research and studies should be conducted to analyze which parts of the brain have increased activity when Individuals with ASD's are engaged in activities that tap into multiple forms of intelligence such as musical-rhythmic, visual-spatial, verbal-linguistic, logical-mathematical, bodily-kinesthetic, interpersonal, intrapersonal, and naturalistic. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the basic neuroscience of ASD
Jen	I think all of those research topics above are a priority. Unfortunately for the average family, genetic testing can be expensive and if you want to get into a genetics clinic (for example, at UNLV), the wait is 6 months +. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Current priorities are appropriate (molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD)
Judy Ferry Rohlfing, M.S. Ed., Ivy Tech Community College - formerly public school corporations K-12 for 26 years	Sex differences and genetic syndromes are particularly interesting to noteThemes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Anonymous	cognitive and behavioral biology and co-occurring conditions in ASD.Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	Another area to research is the link between genes, environmental toxins, brain damage and extreme aggression and lack of emotional control in some persons with autism. Why are some persons with autism EXTREMELY aggressive and others are not? This aggression and lack of empathy for others manifests itself even at the toddler stage and grows sharply worse during adolescence and adulthood. Early manifestations of a lack of empathy even between the ages of two years and four years include swinging a cat by the tail, killing lizards, pulling hair on caregivers' arms, biting siblings, smashing television sets, tearing doors off their hinges so that the door ends up under the bed, bracing their bodies against the wall and pushing cars down the driveway. This area of investigation combines research in molecular biology, neuroscience, developmental biology and cognitive and behavioral biology. Another area of research is that of genetic syndromes related to ASD. Is there a genetic relationship between schizophrenia and autism? There is a need for research in co-occurring conditions in autism. At how early an age can such co-morbidities be diagnosed? Having observed extremely disabled persons like the physicist Dr. Stephen William Hawking communicate through a computerized voice system, can low functioning persons with autism be taught to communicate in a similar manner? Where can we find more information about this computerized voice system? Themes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research on the biology and relationship of co-occurring conditions in ASD; Need research to better understand, differentiate, and treat subgroups of people with autism
Leslie Zevnik	both immune and metabolic aspects AND co-occurring conditions in ASD. The rise of Type 1 Diabetes with ASD in which it use to be very rare. My son with ASD was diagnosed with type 1 last year at age 13 years old. He was diagnosed with ASD when he was 2 years old.Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the biology and relationship of co-occurring conditions in ASD
LeTreese Jones, The A.F.F.E.C.T Institute	I consider research related to neuroscience, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences and co-occurring conditions in ASD most important. The issues with policies is that the policies are words that aren't being followed. The emphasis should be placed on actual and applicable strategies. Themes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research on cognitive and behavioral biology; Need more research on the basic neuroscience of ASD
Anonymous	Developmental, cognitive, and behavioral biologyThemes Addressed: Need more developmental biology research; Need more research on cognitive and behavioral biology
Linda Bullock	I would prefer that ASD not be treated as a disease to eradicate. We should embrace those on the spectrum and help them to become part of the community. More research on how ASD presents differently in males and female. Instead of trying to group everyone together under one diagnosis, maybe there needs to be different diagnosis based on symptoms and causes. Maybe they are not all the same just because they share the same behavior. Finally, co-occurring conditions such as bipolar or ADHD are difficult to treat in those on the spectrum. This needs more research. Themes Addressed: Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need research to better understand, differentiate, and treat subgroups of people with autism
Lisa Geng, Cherab Foundation	An integrative medical approach could be used to study the parents microbiome as well as the childs. There is a newer area of research into the gut brain connection. There can also be studies to understand if there is an underlying viral factor. For example we know both Lyme disease and the Zika can lead to neurological issues. Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need to prioritize gut-brain interaction research
Loreen Booker Brown, Career Veteran in the field o ASD, AND DD populations	ASD co-concerns need more focus on the neuroscience in prevention of regression of cognitive abilities and loss of language. As a professional and parent with a child and husband o the ASD spectrum. I am concern about the need for more research in the area of co-morbid concerns with depression and anxiety. Establish more research on and collaboration regarding comorbid depression and anxiety disorders with the ASD/DD population.Themes Addressed: Need more research on the basic neuroscience of ASD; Need more research on the biology and relationship of co-occurring conditions in ASD
LorRainne Jones, Kid Pro Therapy Services Inc	I think sex differences and co-occurring are critical for better understanding the disorder.Themes Addressed: Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the biology and relationship of co-occurring conditions in ASD
Michael Brackett, Easter Seals	ASD, developmental biology, and cognitive and behavioral biology.Themes Addressed: Need more developmental biology research; Need more research on cognitive and behavioral biology
Faith McGinnis, parent	I would like to see more research and support for female autistic people. More screening and information would help. We definitely need more genetic research and how it corresponds to mutation and environmental components. I firmly believe it is like a wagon wheel. There is genetic, environmental, mutative etc. Are some races more predisposed to Autism like European or jewish or Arabic descent. This needs to be identified much like sickle cell anemia was. I also feel that not enough emphasis is put on the co-morbidities such as depression, aggression, rigidity, adhd and ocd. Autism is not just Autism it is autism with a side of xxxxxxxx. More research into environmental causes such as geography, water supply pesticides.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	Sex differences and co-occurring conditions in ASDThemes Addressed: Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the biology and relationship of co-occurring conditions in ASD
Michele Tryon, Healthcare provider	Molecular biology and neuroscience should be a priority in research. Themes Addressed: Need more research on the basic neuroscience of ASD; Need more research on the molecular biology of ASD
Mindy James	The relationship between ADHD and individuals with "Aspergers" as well as the predisposition to violence that specifically males with ASD tend to exhibit. There needs to be unbiased biological research into the effects of ASD and if it does impact impulsivity and aggression. Instead of shying away from the issue we need research so this vulnerable population can be helped before situations escalate out of control. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	Policy issues should focus on treatment for children. There is research to support treatment, but insurance companies are not paying for the treatments. Co-occurring conditions in ASD may be a way to create subgroups. Neuroscience and brain changes and immune disorders. How molecular biology and internal GI organisms contribute.Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the basic neuroscience of ASD; Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on the molecular biology of ASD; Need to prioritize gut-brain interaction research
Missy Wilson, Easterseals	development biology neuroscience behavioral biologyThemes Addressed: Need more developmental biology research; Need more research on cognitive and behavioral biology; Need more research on the basic neuroscience of ASD
Brynda, Parent of an autistic child	Stem cell research Gould be available in the US and should be allowed for mild cases too. The gut brain relationship and the lack of sleep and how that affects brain growthThemes Addressed: Need more research on cognitive and behavioral biology; Need more translational and interdisciplinary research to improve the lives of people with ASD; Need to prioritize gut-brain interaction research
Christine Reel Brander	cognitive and behavioral biology immune and metabolic aspects co-occurring conditions in ASDThemes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Shimika	Genetics research is very important to understanding the biology of ASD. I think more research should invested into neuroscience, developmental biology, behavioral biology, immunity and metabolic and co-occurring conditions. I think if we have more research in these areas we can diagnosis or be wary earlier so we can monitor the signs and get our children the help they need.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on cognitive and behavioral biology; Need more research on the basic neuroscience of ASD; Need more research on the biology and relationship of co-occurring conditions in ASD
Nichole	These are all important factors and it is difficult to single out one or two that are more important because every child and family is different with different needs. With that being said, I see a great need in working more with fMRI, PET scans, and CAT scans. Each scan sees a different part of the brain and therefore gives more information than the last. Together all the scans will give a more complete picture to what parts of the brain are or are not functioning as designed to. Then would come the testing for molecular biology, genetics, immune, etc. When the children are under the age of 5 that are diagnosed, and these scans are done, there is a greater possibility to re-fire synapses and increase tested hormone levels to make those pathways work in a more efficient fashion. If those parts of the brain are damaged beyond repair (at that point), then the doctors, parents, and teachers can work around the damaged parts to make new synapses happen and neuropathways develop. All of the research and above listed items work hand in hand. Let's work past the thought process that these scans and tests will not do the general population any good. As for the policies, these testings should be required to be paid by insurance but left to the parents to chose if they want to participate or not. It's already an expensive diagnoses for a lifetime, parents do not need the extra expense and worry of not being able to afford proper treatment from the beginning.Themes Addressed: Need more research on the basic neuroscience of ASD; Need more translational and interdisciplinary research to improve the lives of people with ASD
Noel Arring, DNP, RN, OCN	Again the sex differences in autism is a large gap in the research and I would add that there is a need to better under co-occurring conditions and their relationship to ASD.Themes Addressed: Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	Cognitive and behavioral biology as well as co-occurring conditions in ASD. There is a wide range of aspects of ASD of which each child deserves the best interventions and treatment. Along with the treatment should be a team of scientists, doctors, psychologists, teachers and parents to work together for each child's needs. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
nancy sajeski	Insurance companies need to cover genetic testing especially for adults. Need more information on the link between intellectual disability and autism. Which is the primary diagnosis. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need research to better understand, differentiate, and treat subgroups of people with autism
Anonymous	So much research is still needed and it boggles the mind to think about it. How can we help people understand ASD if the experts don't fully understand where it came from? Also, there is a lot of mix up between ASD and other co-occurring conditions and which treatments will be for what.Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Current priorities are appropriate (molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD)
Marisa Lawrence	molecular biology and neuroscienceThemes Addressed: Need more research on the basic neuroscience of ASD; Need more research on the molecular biology of ASD
Robin Havens, parent of someone with autism	More needs to be done overall to identify genetic components to autism. In addition, there needs to be more investigation into immune system dysfunction in people with autism as well as gastrointestinal dysfunction commonly found with people with autism and what the connection is as well as better treatment options.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research into the contribution of immune and metabolic pathways to autism; Need to prioritize gut-brain interaction research
Kristi Stockdale, Parent	I am hoping that much more cellular and genetic biology/neuroscience gets funded related to autism. Having trained in Medicine during the initial stages of the HIV/AIDS era, it has been notable to me how slow the basic science of autism has moved, relative to that of HIV in the 1980s. Relative to the Zika virus, Autism affects many times more individuals in the U.S., and the funding for autism should reflect this!Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the basic neuroscience of ASD
Anonymous	Areas of interest to myself and families served are developmental biology, cognitive and behavioral biology, and co-occurring conditions in ASD. Most families want to know more about the prognosis. Themes Addressed: Need more developmental biology research; Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Cheryl	The feel that the most important research aspect is the social ization that the children struggle with. Let's group them up and see what we can do.Themes Addressed: Need more research on cognitive and behavioral biology; Need research to better understand, differentiate, and treat subgroups of people with autism
Jackie, Parent	Co-existing conditions and a big one for me Behavioral issues/biology. Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Simon Huebner	Instead of causing others with ASD to dwell too much on their deficiencies, instead focus on what this is, and the common traits if it's so hard to determine the difference between the sexes. It is only helpful to see what conditions co-occur in ASD if one knows how to find a way to succeed in spite of their confused minds.Themes Addressed: Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the biology and relationship of co-occurring conditions in ASD
Susie Ross	They are all important research priorities, but I feel that cognitive and behavioral biology, along with co-occuring conditions in ASD are crucial. NF research has demonstrated that the NF 1 brain can make new pathways and in doing so, lessen some of the learning disabilities associated with NF. Research also shows that NF 1 children are more likely to also have ASD as compared to the general population, and so a genetic connection must exist. But, I have used cognitive and behavioral methods to help my NF/ASD (and many other co-morbid conditions) cope better. My child is 23 but appears to be 16 or so to others, primarily because her ASD shows up as a lack of any social skills and low level of frustration when others don't follow rules, or can't understand her brilliant spatial skills (or putting together puzzles without pictures, navigating without directions, etc.) Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	Development , cognitive and behavior biology and genetic Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research; Need more research on cognitive and behavioral biology
Victoria Ekstrand, University of North Carolina -- Chapel Hill	We need to fund more research connected to gastrointestinal distress and sensory processing disorders in ASD children. These are often the first and most intense manifestations of ASD.....more so than other markers like speech and motor development.Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research to better understand sensory processing and motor function in ASD
Kimberly Matkin	Gaps in neuroscience for autism. Need more testing for behavioral issues. More genetic testing.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the basic neuroscience of ASD
Warren Schaeffer	I feel cognitive and developmental differences are important as well the comorbidity of disorders that are associated with ASD.Themes Addressed: Need more developmental biology research; Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Xander McDonald, individual w/ autism, parent, sibling, advocate	I am a transgender nonbinary individual with a child and a sibling on the Spectrum. My child identifies as genderfluid. Both of us struggle with poor health. Doctors don't know what to do with us. I'd like to see more research about gender nonconforming autistics AND the co-occurring conditions we have, because I believe we have more health issues than most autistics, perhaps due to the stress of our situation.Themes Addressed: Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the biology and relationship of co-occurring conditions in ASD
Zoe Goodblanket, Grandparent	Developmental biology, cognitive and behavioral biology, and co-occurring conditions in ASD. More training and specialization for educators who work w ASD children. Themes Addressed: Need more developmental biology research; Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Anne Sawyer, Parent	In order of opinion. 1) Biology of molecular & neuroscience development. 2) Genetic Syndromes 3) Immune and metabolic aspects 4) Environmental and Pharmaceutical risks Themes Addressed: Need more developmental biology research; Need more research and a better understanding of genetic syndromes related to ASD; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the basic neuroscience of ASD
Anonymous	I, after careful consideration of the most current research on the biology of ASD, believe that research should continue to be funded in order to identify possible biomarkers for the disorder in order to improve diagnosis and ensure that accurate diagnoses are made. Comorbid conditions, such as genetic syndromes or autoimmune disorders, should also be researched in order to better understand the diverse and unique needs of those with ASD. This research is currently not funded nearly enough in order to meet the demand for it and it should be prioritized in federal research budgets in order to better serve the ASD community. Themes Addressed: Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptoms; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	Impact of various environmental factors such as diet, additives, and caregiver response on autism symptoms. Looking at how many people with autism also have underlying immune diseases. Understanding how the neurology of sensory integration impacts symptoms of autism and how those symptoms can be lessened with therapies and environmental modifications. Studies of how and why sensory integration therapy helps children and adults with autism to function better. Studies of the impact of parental training in behavioral therapies focused on connection (RDI, Floortime) versus compliance (ABA).Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research to better understand sensory processing and motor function in ASD
Anonymous	I want more research into how autistic people can control our anxiety, and why we are prone to anxiety. Neuroscience could also help us understand the strengths (not just the weaknesses!) of an autistic brain.Themes Addressed: Need more research on the basic neuroscience of ASD; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	Eating disorders in boys and girls. Differences in expression of ASD between boys and girls and creating programs to support all of them.Themes Addressed: Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the biology and relationship of co-occurring conditions in ASD
Cindy Clearman	All of the above are vital to understanding and providing services to individuals with ASD and their families; however, as an educator, cognitive and behavioral biology, genetic syndromes related to ASD, and co-occurring conditions would be most helpful to those providing services.Themes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Claire	I think the most important research is sex differences- Autism has been studied overwhelmingly in Autistic boys (who are also usually white). This leaves Autistic females (like me) and non-white Autistics left to the wayside, and without the support they need. Genetic syndromes may be useful, in order to better support needs, but must be proceeded carefully in order to avoid a eugenics path. Comorbid conditions are also needed to have a look in, also due to being able to support and serve the Autistic person in question as best as possible (i.e. the link between ASD and anxiety, depression, etc.). The biology really isn't important, though. Autism isn't a disease like cancer, and is intrinsically linked to every single part of the individual. As well, it leans dangerously close to (and in) eugenics.Themes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the biology and relationship of co-occurring conditions in ASD
david may, KidstokidsII A NJ Non Profit Corporation	genetic and immune an metabolic aspects Clearly there is a genetic component that needs attention- eg, girls vs boys ratio.Why?Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research into the contribution of immune and metabolic pathways to autism
Anonymous	The biology of ASD's, on a molecular, developmental, cognitive and behavioral level needs to be researched further for prevention in the future and to understand how to best help individuals currently affected by ASDs.Themes Addressed: Need more developmental biology research; Need more research on cognitive and behavioral biology; Need more research on the molecular biology of ASD
Anonymous	neuroscience differences in brain matter between people with Autism and nuerotypical people. Studies correlating gut health to neurology.Themes Addressed: Need more research on the basic neuroscience of ASD; Need to prioritize gut-brain interaction research
Anonymous	I would say immune and metabolic issues related to ASD along with genetics and behavioral differences. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on cognitive and behavioral biology
Anonymous	cognitive and behavioral biology immune and metabolic aspects co-occurring conditions _in that orderThemes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Jenni Sherriff	I would like to see more research into the immunological issues comorbid with autism as well as co-occurring conditions. To date, I have been diagnosed with three different autoimmune conditions. I have dealt with digestive distress, sleep dysfunction, sensory hypersensitivities, sluggish digestion and elimination, bladder problems, and other issues which should not happen if autism is, as other people so often like to say, strictly a "brain disorder". My research shows that autism is neurobiological. If that is the case then there should be some way to research, enumerate, and predict the occurrence of these types of debilitating and comorbid conditions.Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the biology and relationship of co-occurring conditions in ASD
Julie Lorenzen	Genetic syndromes related to ASD and co-occurring conditions in ASD are topics I've been interested in the most as a parent. The big question to me is: How does what is going on in the body influence the brain? My son also has kidney disease (from birth) so that is why I'm interested in getting answer(s) to this question. Am thinking Information gathered in all the topic areas of question #2 can inform topic areas listed for question #1 like subgroups, causes, etc. Themes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research on the biology and relationship of co-occurring conditions in ASD
Kay Ashbrook, Myersbrook Supported Living Agency Corp.	molecular biology and neuroscience, genetic syndromes, & immune and metabolic aspectThemes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the basic neuroscience of ASD; Need more research on the molecular biology of ASD
Kelly Soisson	I think we need to understand more of the neurology and also look at related conditions( gut, etc). Parents are left to decide which way to go behavioral, nutritionally with little support. No treatment map. Financially draining.Themes Addressed: Need more research on the basic neuroscience of ASD; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	1. Neuroscience 2. Co- occurring conditions in ASD 3. Cognitive & behavioral biology Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the basic neuroscience of ASD; Need more research on the biology and relationship of co-occurring conditions in ASD
Lacee Parod, Parent/school employee	Neuroscience and developmental biology. Themes Addressed: Need more developmental biology research; Need more research on the basic neuroscience of ASD
MaryAnn Pranke, Parent of Child with Autism	Developmental, cognitive and behavioral biology. I am a parent of a child with autism. At this point, I don't care why it happened. I just need to know what to do about it now. How do this issues impact his life now that he is a teen. He's had all the services and doing well but I need to know what is going on biologically with him now, and what can I expect. Themes Addressed: Need more developmental biology research; Need more research on cognitive and behavioral biology
Megan Galvin	Sex differences (if this refers to gender), co-occurring conditions, especially sensory processing challenges which presently are not represented in the DSM-V.Themes Addressed: Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender; Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research to better understand sensory processing and motor function in ASD
Anonymous	Focus on immune and metabolic aspects and co-occurring conditions. Consider identifying and mandating screening panels (blood, urine, stool) to rule out and/or identify genetic syndromes, immunological, or metabolic conditions so that appropriate treatment can be targeted. In my experience, Fragile X was the only subgroup that was screened upon diagnosis.Themes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the biology and relationship of co-occurring conditions in ASD
Priscilla Arena	Research priorities should be genetics, immune, molecular biology so we can help prevent more occurances. Organizations that" claim" to aide in research should be monitored more closely that the funds taken in go toward that cause. Ex Autism Speaks, 8-9% only goes toward research, the rest is administrative. As a parent of a child and an executive director for a legitimate non for profit it repulsed me.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the molecular biology of ASD
Anonymous	There should be more research into genetic syndromes as well as immune and metabolic aspects. So many individuals seem to present with similar issues(GI, for example).Themes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research into the contribution of immune and metabolic pathways to autism
Anonymous	Genetic issues related to immune & metabolic aspects & possibly ASD, especially rare genetic deletions, duplications, & mutations on chromosome 12, including both the p & q arms.Themes Addressed: Need more research and a better understanding of genetic syndromes related to ASD; Need more research into the contribution of immune and metabolic pathways to autism
Samiya Ahsan	My child has had constipation since infancy. Thats a co-occurring condition that severely impacts his life that no one really cares about. He has a hyperactive immune response but no one has looked in to that. I dont have the time or money to hunt down specialists and try to find answersThemes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the biology and relationship of co-occurring conditions in ASD
Sarah Hurwitz, Indiana University	genetic causes, neurodevelopmental Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the basic neuroscience of ASD
Linda LaPointe, JERICHO Bureau for Exceptional Children and Adults	Developmental Biology, Cognitive and Behavioral Biology and Co-Occurring Conditions in ASD. As expressed previously the individuals most effected by the characteristic/symptoms of ASD need the most research and information/support. These are the individuals who in the long run will cost our country the most because without the research and information/strategies of successful research we cannot help individuals at this end of the spectrum get to a point of independence to live successfully without maximum support. Themes Addressed: Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptomsNeed more research on cognitive and behavioral biologyNeed more developmental biology research
Anonymous	Molecular Biology and neuroscience implications especially when it comes to seizure potential and frequency. Also would like more info on developmental biology and other conditions or experiences that could be related. For example my son has hip dysplasia and has had multiple surgeries/anesthesia which I felt could have contributed or been part of his delaysThemes Addressed: Need more developmental biology researchNeed more research on the molecular biology of ASDNeed more research on the basic neuroscience of ASD
Serein Lambert	Co-occurring conditions are important in two ways. First are those conditions that exist along side autism, like digestive issues, developmental delays, verbal communication, and epilepsy. The second are conditions caused by living with autism and the impact on connection with other people, like anxiety and social isolation.Themes Addressed: Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptomsNeed more research on cognitive and behavioral biologyNeed more developmental biology research
Kristen and Brian Festa	These questions are critical. Please consult Dr. Robert Naviaux at UC San Diego and help fund his research into the cell danger response in autism. Please help fund a multi-center clinical trial to investigate the use of suramin as a treatment for ASD. Please consult Dr. Richard Frye at Arkansas Children's Hospital. Please help fund his research into mitochondrial dysfunction, folate receptor autoimmunity and gut-brain connections in ASD.Themes Addressed: Need more developmental biology researchCurrent priorities are appropriate (molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD)Need to prioritize gut-brain interaction research
Laura Walls	Molecular bio and neuroscienceThemes Addressed: Need more developmental biology researchNeed more research on the molecular biology of ASDNeed more research on the basic neuroscience of ASD
DOROTHY LOTT	THE MOST IMPORTANT RESEARCH PRIORITY WOULD BE GENETIC SYNDROMES RELATED TO ASD, AND COGNITIVE AND BEHAVIORAL BIOLOGYThemes Addressed: Cognitive Behavioral BiologyNeed more developmental biology researchNeed more research and a better understanding of genetic syndromes related to ASD
Lissa Probus, ASBG	Immune and comorbid conditions are a critical aspect that must be more closely studied to align work with auto immune impacts on cognition and processingThemes Addressed: Need more research on cognitive and behavioral biologyNeed more developmental biology researchNeed more research into the contribution of immune and metabolic pathways to autism
Christine DeHaven	Most important 1 co-occurring conditions 2 neuroscience Themes Addressed: Need more research on cognitive and behavioral biologyNeed more developmental biology researchNeed more research on the basic neuroscience of ASD
J. H., parent	In order of priority: 1. co-occuring conditions, which confound effective treatment 2. cognitive and behavioral biology, the most immediate keys to effective treatment 3. molecular biology and neuroscience, important for everyone but especially for those on the spectrum 4. genetic syndromes related to ASD-- part of the co-occuring conditions issue, but also relevant to timely diagnosis, treatment and prevention.Themes Addressed: Cognitive Behavioral BiologyNeed more research on cognitive and behavioral biologyNeed more developmental biology researchNeed more research and a better understanding of genetic syndromes related to ASDNeed more research on the molecular biology of ASDNeed more research on the basic neuroscience of ASD
Lucy Beadnell	Needs include understanding and mitigating genetic factors that contribute to ASD, improving access to ABA and other early therapies, and better understanding the relationship between ASD and other co-occurring conditions.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on cognitive and behavioral biology; Need more developmental biology research
Anonymous	There is research going on in these areas regarding immune and metabolic co-morbid conditions in ASD but there is little funding. Funding needs to be directed from genetic issues that has had more than a decade to find evidence and cannot to other areas. Research priorities need to be redirected to early detection through testing like Organic Acid Test, Comprehensive stool tests, and heavy metals phorphin / hair analysis testing. Also redirected to co-occurring conditions (such as auto-immunity and metabolic issues) that can be treated and improve outcomes for individuals dx with autism. We also need to do those important vaccine studies. There are too many unanswered questions and too much fraud happening in the CDC concerning studies on vaccination and autism. Please find a 3rd party without affiliations to run these vaccine-autism link studies.Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism
Anonymous	Developments in Neuroscience to aid diagnosis: look at connections needed in the brain. Looking at developmental differences and cognitive therapiesThemes Addressed: Need more developmental biology research; Need more research on the basic neuroscience of ASD
Anonymous	Dr. theo needs funding to continue his mast cell research. Funding for research on treatments for genetic SNPS. Research on lesions on the brains of kids with autism and treatment with ultrasound.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research
Susan Sheldon, Parent	Cognitive and behavioral biology, co-occurring conditionsThemes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research
Sue McCullough, parent	neurological and behavioral development issuesThemes Addressed: Need more developmental biology research; Need more research on the basic neuroscience of ASD
Kristie	Metabolic and co couring Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology researchNeed more research into the contribution of immune and metabolic pathways to autism
Jenny Latham	Behavioral biology neuroscience Immune and metabolic Themes Addressed: Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the basic neuroscience of ASD
Anonymous	Immune and gut issues, as well as sex differences for better diagnosis of girls and women should be priroritizedThemes Addressed: Need more developmental biology research; Need to prioritize gut-brain interaction research; Need more research into the contribution of immune and metabolic pathways to autism
Diana Autin/Lauren Agoratus, Statewide Parent Advocacy Network/Family Voices NJ	We are concerned 'five objectives were below the recommended budget.' We are concerned underserved populations were not adequately addressed leading to health disparities and poorer outcomes. Since this is also an area that was below the recommended budget and number of projects in 'When Should I be Concerned,' above, this appears to be a troubling pattern. We agree that 'Brain tissue studies' need to be expanded. We agree 'females may be underdiagnosed' and more research is needed. We agree that more research is needed regarding 'the immune system.' We are concerned 'There is still very little known about why certain children with autism are noted to deteriorate over relatively short periods of time.' We agree longitudinal research is needed in the area of regression. Themes Addressed: Need more developmental biology research; Need research to better understand, differentiate, and treat subgroups of people with autism; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the molecular biology of ASD
Lisa Ackerman, TACA	Look at the common co morbid issues: 1) Gastrointestinal 2) Immune 3) Metabolic 4) Mitochondria 5) Seizures & abnormal brain waves 6) Overgrowths: fungus, parasites and bacterial infections 7) Regression: identify and deal with regression as a separate categoryThemes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need research to better understand, differentiate, and treat subgroups of people with autism; Need more research into the contribution of immune and metabolic pathways to autism
MaryAnna Dunn	molecular biology and neuroscience developmental biology cognitive and behavioral biology immune and metabolic aspects Themes Addressed: Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the molecular biology of ASD
Anonymous	Research in cognitive and behavioral biology, immune and metabolic aspects and co-occuring conditions with ASD. Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism
Ellen Riehm, Parent	Co-occurring conditions, developmental biology, geneticsThemes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on cognitive and behavioral biology; Need more developmental biology research
Lisa Downey	neuroscience, developmental biology, sex differences, immune aspectsThemes Addressed: Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the basic neuroscience of ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Alexander Frazier, Director, Autistic Reality	Autistic Reality believes that the biggest key is understanding that autism is not anyone's fault. It is not a preventable condition caused by someone's error, but rather a naturally occurring condition that has existed as long as has humanity. Education on natural forms of diversity including mental health issues is currently lacking, and simply must be improved. People must also learn how to shift the blame for disability away from a fault-based model. Understanding that mental health conditions occur naturally is extremely important. It is also very important to realize that males and females and old and young people can have autism, despite the common misconception that children are mostly affected by autism and that mostly males have autism. Autism may manifest itself slightly differently in females than it does in males. Autism often brings with it other conditions such as Obsessive-Compulsive Disorder (OCD), Bipolar Disorder, and ADD. Once again, it is important to realize that these conditions are not sicknesses or problems, but rather forms of mental diversity, which is called neurodiversity.Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Parvathi Gontina	`neuroscience, immune and metabolic aspectsThemes Addressed: Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the basic neuroscience of ASD
Chuck Hartseil	Genetic and brain research. Family supports. Non-Competitive Employment options & quality of life.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessibleNeed more developmental biology research; Need more research on the basic neuroscience of ASD
Michael Hannon	Among the most important research priorities include genetic syndromes related to ASD and co-occuring conditions in ASD.Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research and a better understanding of genetic syndromes related to ASD
Laura Cellini	Immune and metabolic disturbances and co-occurring conditions are imperative as many individuals who are receiving proper identification and treatment for these conditions see their autism symptoms improve or ameliorate. More studies relating to toxicant exposure and genetic vulnerabilities are needed. Increased information of CNS pathology (microglia activation, brain/lymph system, oxidative stress, autoantibodies to brain proteins). 1. Biomarkers and other conditions for susceptibility; Identification of MTHFR mutations; MtDNA mutations and deletions; mitochondrial dysfunction and GI disease; metabolic disturbances; toxicant exposure and genetic vulnerabilities; immune dysfunction (frequent URIs, ear infections, eczema, asthma, altered T cell function, frequent antibiotic use and altered lymphocyte profile); seizure disorder and allergies.Themes Addressed: Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptoms; Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism
Margaret	Molecular biology and neuroscienceThemes Addressed: Need more developmental biology research; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD
Emily Ryan	Mitochondrial dysfunction and regression Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need research to better understand, differentiate, and treat subgroups of people with autism
Lori McIlwain, National Autism Association	Comorbidity in ASD is an underserved topic in all areas of research, treatment, identification, education, awareness and universal access. As a national organization, we witness caregivers striving to find the best information and treatment protocols for their child's unique symptoms to provide to their child's physician. They often spend countless hours pouring through research papers in the hopes of finding help for their loved one's symptoms. These symptoms often include pain, self-injury, anxiety, allodynia, depression, extreme phobias, abnormalities in regulatory processes, hyperacusis, dysfunctional immune response, aggression, insomnia, gastrointestinal issues, eating disorders, unusual sensory challenges, suicide ideation and attempts, pica, seizures, elopement, and other symptoms that may serve to decrease quality of life and increase the risk of malnutrition, injury, or death. Because clinicians have limited knowledge and information on comorbidities as they relate to ASD, in addition to communication challenges among their patients with ASD, underlying medical conditions often go unrecognized, misdiagnosed and untreated. We encourage the creation of reliable, universal guidelines for physicians on common comorbidities seen in ASD, and treatment protocols. We also encourage the creation of a central channel, such as Autism.gov, which can provide universal access to reliable information on comorbidity in ASD.Themes Addressed: Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptoms; Need more research on cognitive and behavioral biology; Need more developmental biology research.
Anonymous, Pittsburgh Center for Autistic Community	1) The role of sex in the clinical presentation of autism spectrum disorders (ASD) remains unclear. Numerous studies highlight sex related differences and suggest that ASD may be under-recognized in females. ASD diagnostic criteria may be biassed towards more stereotypically male symptoms. Further research is necessary to better understand the impact of sex and gender on the presentation of ASD. Separate diagnostic criteria or thresholds may need to be considered for different subgroups. 2) It is increasingly hypothesized that sensory differences may underlie the behavioral traits commonly used to identify ASD. Further research to delineate the nature of these differences as well as interventions to more directly address difficulties related to alterations in sensory/information processing are an essential area for further development. 3) Joint Hypermobility and Ehlers-Danlos Syndrome seem to affect a high percentage of the ASD population. There's also a high prevalence of epilepsy and seizure disorders in this demographic. Learning about environmental risks for seizures can save lives. 4) A recent Autistica study showed autistic as having such a curtailed life expectancy clearly shows that autistic health paradigms are inadequately understood.Themes Addressed: Need more research on cognitive and behavioral biologyNeed more developmental biology researchNeed more research to better understand sensory processing and motor function in ASDNeed more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Anonymous	Molecular biology and neuroscience, immune and metabolic aspects, co-occurring conditions Themes Addressed: Need more research on cognitive and behavioral biologyNeed more developmental biology researchNeed more research into the contribution of immune and metabolic pathways to autismNeed more research on the molecular biology of ASDNeed more research on the basic neuroscience of ASD
Shannon Des Roches Rosa, parent	Research into understanding co-occurring conditions is crucial, as is promoting the understanding that treating co-occurring conditions is *not* treating autism. Understanding the mechanisms by which autism manifests is important -- but it is not nearly as important as ensuring that existing autistic people get the supports and accommodations they need. The emphasis and funding of research, proportionately, needs to shift to reflect real and desperately pressing needs: What are the underlying neurological, genetic, cognitive, and/or developmental reasons some autistic people are non-speaking? Why is it that autistic developmental trajectories are so different from non-autistic arcs, and how can we ensure supports reflect that often explosively punctuated developmental progress? Why are the mechanisms behind visual and auditory processing difficulties, and why do they get mistaken for behavioral difficulties? etc. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessibleCognitive Behavioral Biology; Need more research on cognitive and behavioral biology; Need more developmental biology researchUnderstanding the biology of ASD is not a priority relative to other areas (i.e. treatment and services); Need more research on the basic neuroscience of ASD
Becca Lory	Sex differences and co-occurring conditions present the biggest challenge for those already living on the spectrum.Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Jessica	Genetics and molecular biology and how to work with it Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research; Need more research on the molecular biology of ASD
Allan D. Hollander	There needs to be much more emphasis in autism research on cognitive psychology, in particular focusing on perceptual differences and cognitive styles. Emphasizing sensorimotor differences is especially important because these can be highly disabling, and are perhaps key to understanding the cognitive basis to autism, as well as unifying understanding of many of the co-occuring conditions. Moreover, these provide many avenues for solid quantitative research (see e.g. E.B. Torres et al. 2013, Autism: the micro-movement perspective. Frontiers in Integrative Neuroscience 7(32) 13-36) Conversely, the current emphasis in research on molecular biology and genomics seems extremely reductive, neglecting that cognition is an extraordinarily tiered phenomenon, and that sociality occurs at the upper tiers of it. For instance, naturalistic studies of how autistic people actually engage socially may offer better clues towards effective therapies than looking for details at the molecular level of neuroscience.Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Understanding the biology of ASD is not a priority relative to other areas (i.e. treatment and services); Need more research to better understand sensory processing and motor function in ASD
Anonymous, The Childhood League Center	Research surrounding co-occurring conditions, developmental, cognitive, and behavioral biology along with genetic research gives the community guidance in putting together the puzzle pieces that make up ASD. The many, varied components that factor into ASD needs to be further explored.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessibleCognitive Behavioral Biology; Need more research on cognitive and behavioral biology; Need more developmental biology research
Catherine Camp Boyle, Autism Housing Pathways	The interrelationship of immune issues, metabolic issues, and environmental exposures is of grave concern. Particularly, these may lead to a more severe phenotype. While the genetics of autism may not have changed over time, it is certainly plausible that its presentation may have changed due to a wider range of environmental exposures and possible synergistic effects of those exposures. Another issue of concern is movement disorders in ASD, including autistic catatonia presenting in adolescence and young adulthood.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research to better understand sensory processing and motor function in ASD
Angela Lello, Autism Speaks	There is still much that is unknown about the biology of autism. Genetic studies have provided a long list of genes that we know are involved in autism, but it is unknown what role these genes play in development of the brain or how changes in their function may alter brain circuitry. These are understudied, but important areas. One of the main priorities of the strategic plan should be focusing on research to better understand how co-occurring medical conditions impact functioning and outcomes in ASD, specifically GI, sleep and seizures. A better understanding is needed on the trajectory and outcomes of individuals with ASD and co-occurring conditions. Focus should also remain on last year's objectives. Another priority should be a better understanding of the genesis of challenging behaviors, wandering and elopement behaviors, etc. Since most families engage in more than one type of intervention/treatment, more emphasis should also be given to better understanding the benefits and risks of combining different treatments, including medicine and behavioral intervention. There is a limited recognition of the different forms of autism and consideration of all forms of ASD as a single population, which should be addressed. More translational research is needed, e.g. a number of genetic mouse and rat models of autism have become available in recent years but investment is needed to characterize these animals to gain the necessary insight into the biology of autism that is missing.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessibleNeed more research on cognitive and behavioral biologyNeed more developmental biology researchNeed research to better understand, differentiate, and treat subgroups of people with autismNeed more translational and interdisciplinary research to improve the lives of people with ASD
Anonymous	Whereas there are some genetic causes of Autism, I believe we will eventually come to find that much of the condition we call Autism today, will turn out to be more of an autoimmune condition. I believe that much of the current rates of Autism are due to a combination of environmentally impacted genetic components (creating a predisposition towards developmental differences) and weakened immune systems of both mother and child. If we can put research dollars into finding out which groups of individuals are most compromised (in both immune systems and genetics), then perhaps something can be done to beef up the individuals immune systems prior to challenging those immune systems that are not yet able to properly take on the challenge of immunizations. I also believe this will be the answer to a myriad of other autoimmune and neurological conditions that have skyrocketed in recent years. Research into the maternal immune system could shed much light into how compromised an infant will be upon birth. A maternal overgrowth of Candida yeast might alter the mother's ability to pass along important components of the immune system to her gestating child.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessibleNeed more developmental biology researchNeed more research into the contribution of immune and metabolic pathways to autism
Annie Acosta, The Arc	Co-occurring Conditions. We need to better understand how co-occurring medical and mental health conditions impact functioning and outcomes' specifically gastro-intestinal (GI) problems, sleep disturbance, seizures, anxiety, and bipolar disorder. We also must develop a better understanding of the trajectory and outcomes of individuals with ASD and co-occurring conditions. Triggering Events/Conditions. We are developing a better understanding of the unique sensory experiences of persons with ASD. However, we must better understand how these relate to the root causes of challenging behaviors, including aggression, self-injurious behavior, and wandering/ elopement. Multiple Treatments. Many individuals with ASD receive different interventions simultaneously (when they are fortunate enough to have the needed resources and access). There needs to be a better understanding of the benefits and risks of combining different treatments, including medication, therapies, and behavioral intervention. Themes Addressed: Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptomsNeed more research on cognitive and behavioral biologyNeed more developmental biology research
Anonymous	Sex differences are very seriously under-researched; some countries' research is not quite as behind as the U.S., but professionals here seem to have no knowledge of it. Both girls and adult women, who can often learn excellent surface coping skills but be unable to notice or communicate other issues, need appropriate screening criteria and tests that work, not male-based ones. Positive aspects of milder autisms need to be quantified, too!Themes Addressed: Need more developmental biology research; Need research to better understand, differentiate, and treat subgroups of people with autism; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Renee Vogt	I would put cognitive and behavioral biology, sex differences and co- occurring conditions at the top of research. Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Anonymous	Neurobiology of sleep disturbance in ASD. Sleep architecture and epilepsy in children with ASD. Themes Addressed: Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptoms; Need more research on cognitive and behavioral biology; Need more developmental biology research
Stephen Holtsbery	Sex difference research is high priority. Co-occuring conditions is very common. Genetic and immune aspects remain not explained well enough.Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Sherri L Kelly	Genetic syndromes associated with ASD. My son has 2 genetic abnormalities that I have passed on to him, but I have no symptoms. Testing is still a major cost although prices have come down considerably. Also, advances in neuroscience can hold out hope for treatment for those with ASD.Themes Addressed: Need more developmental biology research; Need more research and a better understanding of genetic syndromes related to ASD; Need more research on the basic neuroscience of ASD
Toril H. Jelter MD, MDI Wellness Center	EMR / electromagnetic exposure also called non-ionizing radiation can contribute negatively in all these areas causing chromosomal abnormalities, cognitive and behavioral problems, immune problems, seizures and much more see info. by Dr. Martha Herbert and Cindy SageThemes Addressed: Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptoms; Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism
Anonymous	More screening differential between known genetic disorders that present with autism symptoms but are a function of the genetic disorder. More research into immune and metabolic panels in regards to behavioral aspects.Themes Addressed: Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism
Azuree Natice	Neuroscience and neuropsychology to understand the challenges as well as the strengths of the autistic brain. Cognitive and behavioral biology and psychology to increase understanding and help develop effective support tools so that autistic people can develop both coping strategies and confidence in their own abilities. Sex differences in the expression and experience of ASD, so that girls and women on the spectrum are better understand and don't continue to be overlooked or judged by criteria developed from studies only on boys. Research into the causes of, and best supports/treatments for co-occuring conditions; so that the epilepsy, depression, anxiety, and other medical conditions that often ride shotgun with autism can be best treated, alleviating suffering and reducing the risks of addiction, suicide, and suffering.Themes Addressed: Need more research and better understanding of the biomarkers and symptoms of ASD, and the heterogeneity of symptoms; Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research on the basic neuroscience of ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Angelique Higgins, parent	Perform prospective studies of children with family history of autoimmune disorders and MTHFR gene mutations along with other immune-related genes/class II alleles that are immune/metabolism related, especially with regard to vaccination. Track post-natal epigenetic changes and autoimmune markers pre- and post-vaccination for each round of vaccines, up until school entry. Correlate with diagnoses of autism, ADD/ADHD, GI disease, diabetes, seizure disorders. Study for abnormal immune response to vaccination such as refractory response (no immunity) or hyper-response (abnormally high titers), correlate with developmental problems.Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research into the contribution of immune and metabolic pathways to autism
Anna Frances, autistic 17 year old	The specifics of each autistic person's biology are unique and should be addressed as such, but overall there is the underlying issue of the Leaky Gut, where intestinal permeability (often worsened by gluten, antibiotics, heavy metals and yeast infections) releases toxins into the bloodstream and can cause physical, cognitive and emotional impairments. More information can be found in the book Outsmarting Autism. Themes Addressed: Need more developmental biology research; Need to prioritize gut-brain interaction research
Wendy Fournier, National Autism Association	Upon diagnosis, thorough medical screening should be conducted to identify and immediately begin treatment of common medical co-morbidities in individuals with autism. These include GI issues, sleep disorders, seizures, food sensitivities, immune system, mitochondrial and metabolic disorders. Themes Addressed: Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the molecular biology of ASD
Marc Freeman	While all of these are important, I tend to lean towards neuroscience, developmental biology and genetic syndromes related to ASD as being higher priorities. Every doctor we talk to says the same thing, "We don't know what causes it and there is no treatment for it". I want to know what causes ASD and I want to see a treatment found so life would not be so hard for my son.Themes Addressed: Need more developmental biology research; Need more research and a better understanding of genetic syndromes related to ASD; Need more research on the basic neuroscience of ASD
M. Hail	cognitive and behavioral biology, immune and metabolic aspects, then co-occurring conditions in ASDThemes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research into the contribution of immune and metabolic pathways to autism
Yvette Cunningham	Genetic syndromes, developmental biology, cognitive and behavioral biology, social issues is a major problem that seems to affect our family, or the leck of the social ability.Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research; Need more research and a better understanding of genetic syndromes related to ASD
Jade Sands, autistic adult	I think there is too much focus on causes of autism and that is where most funds seem to go, rather than what can be done to make life better for autistic people. There should be more research on differences in sensory processing, and on co-occurring disorders such as inflammatory bowel disease, Ehlers Danlos Syndrome, migraines, and other medical issues that seem to be more common in autistic people.Themes Addressed: Understanding the biology of ASD is not a priority relative to other areas (i.e. treatment and services); Need more research to better understand sensory processing and motor function in ASD
Cheryl Miller, Parent and teacher	I would say that the behavioral biology and neuroscience hold the most promise for these wonderful kids.Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the basic neuroscience of ASD
Anonymous	There needs to be more research on the molecular biology and neuroscience aspect as well as the immune and metabolic aspects, way more research is needed in the brain to gut connection as well as finding out if certain children are more susceptible to adverse reactions to immunizations!Themes Addressed: Need to prioritize gut-brain interaction research; Need more research into the contribution of immune and metabolic pathways to autism; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD
Dr. Tanya Skalecki, The Arc Mesa County	Emphasis needs to be put on co-occurring conditions of ASD. Many times school districts try to treat the student's behavior as "naughty behavior" and do not treat the causes of the behaviors related to the ASD and the co-occurring conditions such as anxiety disorder, mood disorder, ADHD, OCD, etc. Girls are under identified with ASD, additional training needs to be put into place for such gaps. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Anonymous	developmental biology; also cognitive and behavioral biologyThemes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research
Karen Heffler, MD, Drexel University	Extensive research in both animals and humans shows that brain development in infancy and early childhood is highly dependent on early sensory experience. What the child sees, hears and feels determines brain connectivity and behavior, a concept called neuroplasticity. Research in autism has ignored the science of neuroplasticity, which may explain the brain development of many children with genetic risk who develop ASD. Brain alterations and attention mechanisms in ASD are largely auditory and visual, exactly what we would expect from heightened early audiovisual exposure. The idea of early TV/screen viewing as a trigger for ASD in those with a genetic risk is consistent with the neurologic findings in ASD, the developmental defects in ASD (cognitive deficit, language delay, behavior problems, social deficits), the superior abilities in visual search and auditory pitch seen with ASD and the many other findings. Research is needed to better understand the contributions of early screen viewing to the neuroscience of autism spectrum disorder. Themes Addressed: Need more research on the basic neuroscience of ASD; Need more research to better understand sensory processing and motor function in ASD
Trish, special ed nurse and parent	immune and metabolic co-morbidities. A lot of behaviors issue from the physical sequelae related to autism; e.g. auto-immune features, low muscle tone, bowel problems. Also, not enough research has gotten to the heart of the attendant communication problems, receptive and expressive language - their general inability to navigate the world safely, explain themselves to others, cope and problem solve.Themes Addressed: Need more research on cognitive and behavioral biologyNeed more research into the contribution of immune and metabolic pathways to autism
Anonymous	Cognitive and behavioral biology research should be of great importance for those with ASD. This research can better assist those with ASD so that they are able to navigate in their daily lives.Themes Addressed: Need more research on cognitive and behavioral biology; Need more translational and interdisciplinary research to improve the lives of people with ASD
Anonymous	Cognitive and behavioral biology are important research priorities. Gaps currently exist in co-occurring conditions.Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Anonymous	neuroscience ; genomics ; precision medicineThemes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on the basic neuroscience of ASD
Amanda	Co-occurring conditions. Behavioral biology.Themes Addressed: Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD
Rebecca	I think gut, especially gut dysbiosis, and immune-related issues need more research behind them.Themes Addressed: Need to prioritize gut-brain interaction research; Need more research into the contribution of immune and metabolic pathways to autism
Bronte Abraham, Parent	My son has vitiglio and is demonstrates oxidative stress -- but we have no idea why. Metabolic and immune contributors are important and often can be treated -- but it is hard to test for and develop and firm correlation between symptoms and cause. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research into the contribution of immune and metabolic pathways to autism
Susan Walton, Outdoor Autism & Special Issues School	Immune and metabolic aspects and co-occurring conditions Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research into the contribution of immune and metabolic pathways to autism
Angela Hiller	Sex differences and co-occurring conditions. Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Anonymous	metabolic aspects. Specifically gut flora research and vitamin research.Themes Addressed: Need to prioritize gut-brain interaction research; Need more research into the contribution of immune and metabolic pathways to autism
Marge Blanc, Communication Development Center, Madison, WI	Co-occurring conditions in ASD can make the difference in perceiving autism as 'high-functioning' or 'low-functioning.' Gut issues and others create challenges that make families feel that 'autism' is a dreaded condition. Co-occurring conditions split the autism community into those who feel there should be 'autism pride,' and those who feel 'autism' is a curse.Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need to prioritize gut-brain interaction research
Michelle Baker	cognitive and behavioral biology, developmental biology and neuroscienceThemes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research
Kathryn Hedges	We have enough data on neurobiology and genetics. We need research about sex differences and co-occurring conditions.Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Morgan Smith, An Autistic Adult	The most important research topic is how to help autistic people who already exsist. With reasonable accommodations, we are wonderful and productive members of society. As for sex differences, it needs to be made common knowledge that not everyone presents with autism the same way. I have many "atypical" autism traits, which led to me feeling like an outcast and other things until I was diagnosed used later in life.Themes Addressed: Understanding the biology of ASD is not a priority relative to other areas (i.e. treatment and services); Need more research on sex and gender differences, inclusive of both biological sex and self-identified gender
Anonymous	Molecular biology and neuroscienceThemes Addressed: Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD
Anonymous	Developmental biology, cognitive and behavioral biology. They are trained to collectively view the symptoms as related. Themes Addressed: Need more research on cognitive and behavioral biology; Need more developmental biology research
Tina Santana, Parent/Self	Genetic syndromes, yes, and more on the behavioral/cognition front. I can't write YES enough!Themes Addressed: Need more research on cognitive and behavioral biology; Need more research and a better understanding of genetic syndromes related to ASD
Rachel , Waterson	Its frustrating that a cause is not known because it allows the insurance companies to weasel out of paying for therapies because they consider it a mental health or behavioral issue rather than a physical disability. My son has fine motor issues too but no explaination or testing as too why it affects not only his speech but his motor skills too. So more research is needed on how autism affects the brain and cause the other symptoms of autism like motor problems or sensory overload or stimming Themes Addressed: Need more research on the basic neuroscience of ASD; Need more research to better understand sensory processing and motor function in ASD
Stephanie Mendelson, SASI (Suffolk Aspergers/Autism Support & Information)	finding the genetic and developmental neurobiological processes that are affected in different types of asd conditionsThemes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more developmental biology research; Need more research on the basic neuroscience of ASD
Nicole Miller	Co occurring conditions, priority. Molecular biology and neuroscience next.Themes Addressed: Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research on the molecular biology of ASD; Need more research on the basic neuroscience of ASD
Stacey Phelps Anderson , Parent of three teens w/ diagnoses of either Autism or Aspergers	Gastrointestinal and immunology need to be addressed. Seizures, tics, sleep issues, sensory, auditory and other neurological issues need to be addressed. Genetic mutations leading to mitochondrial dysfunction and other genetic mutations need to be tested and properly addressed. Cognitive and behavioral services need to be available nationally and in place. Depression, OCD, and other mentor health disorders as well as socialization, speech, occupational therapy, art, physical therapy, music, water safety and hippotherapy and other rehabilitation services need to be made available to help rehabilitate these community members. Themes Addressed: Need further research on the genetics of autism, and genetic tests should be more accessible; Need more research on cognitive and behavioral biology; Need more research on the biology and relationship of co-occurring conditions in ASD; Need more research to better understand sensory processing and motor function in ASD
Liza Krassner, Parent and UC Irvine Public Health employee	Understanding the biology of ASD is important. Themes Addressed: Need more developmental biology research; Need more research on the biology and relationship of co-occurring conditions in ASD; Current priorities are appropriate (molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD)

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