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Question 3 Responses

What Caused This To Happen and Can This Be Prevented? (Risk Factors)

Themes from Responses to Question 3

Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome)

Respondent Response
Joaquin Fuentes, Policlinica Gipuzkoa & Gautena, San Sebastian, Spain Effect of these aspects in the development of the brain and changes in adulthood
Anonymous All are important. Find the gene that causes ASD.
Jan Groh, EDS & MCAS pt, Aspie "cousin", writer This is a toughie, I think they all matter, possibly equally. I'm convinced our increasingly toxic environment is lending to increasing amounts of methylation cycle defects, and poor diet lends to malabsorption/nutrition and drives more defects/SNPs on the genes involved. Sorry if that's not much help.
Julie Long, parent of child on spectrum All of these areas are important to be studied further: genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome.
Anonymous Popular biomedical theories such as Kerri Rivera's "parasite" theory; anti-vaxxers "heavy metals"; and "gut health" need to be debunked. Policy should be to denounce all of these unproven practices, including gluten-free diets, MMS/CD, hyperbaric oxygen therapy, and chelation.
Leanne GoldatE For awhile now I knew my son was not like the other kids his age. Having just learned my son's diagnosis of High Functioning Autism I'm just starting to study and learn the different areas that are being researched, I would have to say the risk factors are of importance to me. Are my grandsons and future grandchildren at risk?
Lisa More needs to be done to pinpoint likely causes.
Anonymous There should be well documented, unbiased, globally tested research done on logical reasons that Autism occurs. This would go a long way to developing a method of prevention.
Anonymous All areas are extremely important, specifically how did my son get Autism.
Patty Jo I'm most interested in causes. Although there is much research in this area, nothing solid seems to be evolving.
PETER MAZURE, Parent Finding the cause of ASD is critical to treatment and prevention.
Colette Tarrani "All the risk factors whether it be genetic, environmental risk factors, gene-environment interactions. #1 All the Drs and CDC seem to tell us is what it is not caused by Vaccines, Well then tell me what caused it!!!! Find out what causes it and stop it!!! Tell us what causes it! Find what does!! Fix it!!!"
Teri Doolittle, PA-C, MHP, DHSc Research policies, all of the above; researchers should seek and include the evaluations from licensed evaluators in all agencies and institutions, including school-based, DVR, private practice, hospital based, and social service/I/DD agencies. Information sharing in a secure system of data/evaluation sharing system would prevent data loss, waste, duplication, and delays. New methods of big data analysis should be used to find patterns of specific disabilities and co-occurring conditions, and link that back to the genetic and epigenetic analysis.
Anonymous They are all equally important
Anonymous All
Betsy Cohick, IU 13/parent of adult son with autism/ID Please continue to fund research in this area Additional information for question 6 (Lifespan issues I had too many things to write and went over my word limit) Long term saving accounts so that individuals can save for items over $2000 without losing their benefits. Many individual in groups homes do not have family involvement. I believe some states (Ohio?) are starting to allow certain accounts for this but are charging a monthly fee for this service. My son doesn't have any income except SSI and the majority goes to room and board so it takes a long, long time to save money. If he is charged a monthly fee it takes even longer. Some disability equipment medical and recreational is extremely expensive. For example: my son's bike/wheelchair sports equipment is near $4,000. We had help through a fund raise group IMable but if we didn't it would have taken years to save to get it and a monthly fee to save that amount would have made that wait longer.
Carla Meads They all equally are valuable!
Anonymous There is no conclusive medical answer as to what causes autism. That needs to be addressed.
Anonymous More research in all of these topics would be helpful, but not at the expense of not helping those who are afflicted now.
Anonymous Very important to understand. All listed above is needed.
elaine nelson, young adult son with autism all
Anonymous Autistic children and adults need continuing research in understanding the many causes of autism.
John Welch Research into causation. Until we know what causes autism, everything else is a bandaid.
Anonymous All of these are priorities. Causes.
Korri Ward, Northern Nevada Autism Network Fund research into how autism can be prevented.
Anonymous Again, this needs to be talked about more, all the way around.
Anonymous Important to figure out
Lindsay Sherwood More research needs to be funded to help find answers as to the causes of ASD. So little is known and the numbers of children with ASD continues to grow.
Anonymous Again, not just one topic.
Anonymous Research Rules! Funded research can identify risk factors and create opportunities for potential lessening of ASD features.
Christine Reel Brander biomarker development causes of autism
Noel Arring, DNP, RN, OCN All three of these topics are a critical need to help us move ASD research forward.
Renee Portnell I believe genetic, environment risks facts and all the other above mention to see what really causes Autism. If they know what causes Dpwn syndrome and other kind of disabilities when will they trully find it on Autism. I don't really believe its childhood shots, if it was then all children would be effected.
Anonymous It seems every parent has their own idea of how their child came to have the diagnosis of ASD. There is an significant lack of research in this area and it causes ignorant decision making and fear.
Anonymous, Parent These are for the scientists to determine, but there has to be a coordinated and determined effort to find the cause(s). An all out and coordinated effort of basic research to discover the one, two, three or more reasons / causes for this epidemic is required.
[Minor/Dependent Name Redacted]'s Mom, Parent Cause and prevention are the most important research priorities. I find it difficult to process information from so many different sources, sometimes the information that gets published contradicts each other. I feel we need an objective research entity, not the government, and not sponsored by any private corporation to coordinate research and publish to the public.
Anonymous all of the above
Heather Winterbottom More research into cause with the focus on helping people with autism achieve their highest potential.
Julie Lorenzen My biggest concern is the fighting (liberals on the left against conservatives on the right) that surrounds these types of answers. Parents face so many dualities (for example, do vaccines cause autism or not?) when it comes to these type of topics. Personal beliefs and political agendas can get in the way of understanding these topics.
Anonymous These are all valid and important priorities: genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome. The unknowns of this affliction are what cause so much uncertainty in understanding it's progression. The most important research for me at this point in my experience as the parent of a teenager on the spectrum approaching young adult hood steadfastly is on identifying the "origins" of Autism such as Why it happens, Where it comes from, Who is at greater risk to develop it, What genetic factors are involved, When does environment correlate if it all and How can we be sure a cure may or may not ever appear.
Linda Tortorelli Any and all research in this area is needed.
Hollister SykesAbsolutely! After all these years we still do not know. This has to be the most critical issue.
Laura WallsAll of the above
Dyan Spruill M.A., CCC-SLP, The Floortime CenterI believe risk factors should be discussed and possible precautions during or prior to pregnancy and early infancy can be taken but it is also important to recognize this children and adults with autism spectrum as different, not disabled, and treat them accordingly.
Anonymousall of the above
AnonymousPolicy: effectiveness of strategies. Risk factors: latest research
Pamela Harbin, Education Rights NetworkThere should be a discussion about the desire to prevent autism.
Jenny LathamEnvironment Research on ways to help child and parent
Diana Autin/Lauren Agoratus, Statewide Parent Advocacy Network/Family Voices NJ#3 We understand that out of ''15 specific objectives'Four objectives'met or exceeded the recommended budget and fulfilled the recommended number of projects.' We are concerned that 'Eleven objectives, concerning identification of genetic and epigenetic markers, environmental exposure risks, and study of special populations, partially met'' the recommendations. With the increase in prevalence, identification of genetic and environmental factors is essential. Further, we know that children of color and low income children are more likely to be exposed to environmental exposure risks, and thus, once again, issues impacting children and families of color are not receiving the attention that they deserve and that the strategic plan supported. We understand that there have been recent research advances on ''the role of genes' and we agree that 'The emerging picture is one of profound complexity.' We strongly agree that ''environmental exposures and gene-environment interaction would likely be important to fully understanding ASD risk.' We are concerned that due to its importance ''very few studies have focused explicitly on gene-environment interaction.' We do understand that one breakthrough was determined regarding paternal age as a risk factor. We recognize that recent research has demonstrated ''sibling recurrence risk for ASD have important clinical implications.'
Lisa Ackerman, TACANeurological Health Foundation: www.neurologicalhealth.org has already invested and has a great prevention initiative that is well funded, science based and an excellent tool kit for parents and professionals. I would engage them on what priorities based on the data collected.
AnonymousAll!
Glowyn Roughton, Emg consultingHow to prevent?
Bruce Hall, Bruce Hall PhotographyI am not a scientist, however, I believe creative, divergent inquiry related to causation must be funded and studied, so that one day we can prevent or reduce the impact of autism and other developmental disabilities on our families.
AnonymousCertainly if we can help identify any environmental or hereditary risk factors that would be very helpful.
AnonymousAll of the above
Chitra Raman, ParentAll of these factors are important areas of investigation. But do include the area of research I addressed in my response to Question 3.
TammyAll of these things need to be brought to the forefront of the autism issues we face. This is even more important than research into causes and reasons for autism's existence.

Need more research to better understanding environmental risk factors, including both chemical and social environments

Respondent Response
stella avcisoy, ARC of Seneca Cayuga I believe that one of the most important areas of research should be in genetic and environmental risk factors.
Brad Wyner, Rose-Mary Center The "heavy metals" research (Dr. Scott Faber & colleagues) need to be brought into the mainstream, including myth-busting & demystifying.
Carol Moore, Early Intervention/Early Childhood Special Education It is critical to determine if there are environmental factors in the etiology of autism. The incident rate of autism has increased beyond what could be accounted for through differential diagnosis criteria changes. It suggests the possibility of neurotoxins or teratogenic factors either directly causing or triggering genetic predispositions to autism.
David Feickert Figure out why people think it's environmental risk and see how to get rid of them. To also stop people saying oh vaccines is the cause of Autsim when it has been proven that it's not the cause.
Emily Norton, Parent Look at environmental risk factiors, bisephonal in bottles, vaccines, and drugs administered at birth.
Erika Liljedahl We need more research on possible environmental factors. Coming from a biopsychosocial approach, it is possible that children have the genetic marker for ASD however an environmental factor might allow that marker to manifest.
Anonymous Research: common chemicals, pesticides, and GMO's
environmental I believe there are definite environmental factors impacting the rise of autism. Food source? Mercury? There is a greater increase in children with autism and challenging behaviors among children than ever before. We must look at all of the potential environmental risk factors and the impact on generations.
R. Paleau With the prevalence of autism rising, there needs to be full transparency in all the research done as to its causes. I know many parents who believe it's from vaccines, or the additives in vaccines. I can't help but believe its environmental factors, or the growth would not be this significant in such a short time frame. So I believe the additives and chemicals we allow on our food, and in our animals needs, and on our lawns and in our bathrooms to be explored. The government needs to stand up for its citizens and not the chemicals companies like Monsanto. But I have little faith this will happen.
Jeanette Carman Environmental Cause.
Anonymous environmental
Jennifer Hane Environmental Risk Factors
JulieKay Dudley, Autism Society of Oregon I would like to see more research into possible environmental causes or influences.
Wendy Wolfe-Womack Environmental factors are definitely a concern
Anonymous As mentioned in question 2, environmental risk factors need to be taken seriously and identified. I consider it crucial to find the link between pollution, chemical exposure through products we buy, eat, breathe, etc. and autism, as well as other disorders.
Niki All these issues are addressed wheaten the functional medicine . Environmental hazards are one of the major / fi st cues of Rise of autism / disabilities. fixing those will lead to a better gene outcomes . Priorities are healthy food ,healthy water ,healthy air.
Nathan Call, Marcus Autism Center/Emory University underlying root causes (e.g., social reward?)
Oliver Wendt, Purdue University social environment as a risk factor
Anonymous Environmental factors
Anonymous Pour resources into identifying higher prevalence of autism in certain cities or specific areas so potential environmental risk factors can be studied and researched.
Anonymous It is very difficult for me to decide what is the most important research priority, policy issue, or gap. I believe them all to be important in the fight to finding a cure for Autism. If I must choose however, the subject of priority would be environmental risk factors. What is the one of the things in our environment that has become more accessible over time, and as the accessibility has increased, so has the rate of Autism? What are children more exposed to today than they were a decade or two decades ago? It is my personal belief that the advancement and accessibility of technology is a possible factor in Autism in children. Children have more and constant access to cell phones, tablets, laptops, new High Definition televisions, and other sources that produce more bright lights than some children’s developing minds can handle. I theorize that in this occurrence, the Autism gene may not be a defective gene, but a protective gene, activating in order to prevent further harm to the developing child’s brain, possibly acting as a surge protector. I believe there is a gap in the research in the field of Autism. It is my personal belief that much of today’s research is concentrated in finding the cause for Autism within our DNA, and that not enough research is being done in finding the environmental links which may be factoring into children with autism. I am not by any means advocating for the reduction of studies and research on one front, in order to forward the study and research on another. I simply believe that in order to combat Autism, we must do so on all fronts with equal motivation and ferocity in order to ensure that no stone is left upturned, and that no sliver of information to help in the fight against Autism, slips past us and through the cracks. Because for every stone not upturned and every piece of information for the cure that we allow to slip by, another child may have to suffer.
Sheila Stauffer Risks for environmental should be looked into for a mother in her pregnancy although it could be genetic so not sure if it is entirely environmental. I would like to see more research into where genetics and/or environmental factors play into the diagnosis. Perhaps even in the beginning stages of pregnancy perhaps if it is toxins etc.
Harriet Austin I don't see how the genetics can be changed, but understanding the role of environmental factors could offer an avenue for a reduction in severity.
Anonymous Major gaps have been seen in the area of environmental versus genetics when referencing the cause of ASD. More research and emphasis on this matter would benefit the population greatly.
Wanda Ross Padilla Environmental risk factors...how serious? air quality? food quality? fast foods vs plant based food...urge home cooked/prepared meals
Anonymous I want to know more about environmental risk factors involving Autism. The hazards that living in Europe on military bases where nuclear leaks were recently admitted to have happened and nobody given notice. Now our children suffer? I would like to know if there are genetic screenings for families where Autism shows up multiple times. If there are no genetic findings of Autism in a family, what about historical environmental poisons that may have caused Autism to hit a generation in a family. There were several biohazard leaks in Europe that as a military family, we were exposed to as children. Now our children are born with Autism and other disorders.
Anonymous I have students in school, that given a different living environment, would not be diagnosed with ASD. Environmental, low economics, and parental influence (or lack of) are directly related to how some students operate in school.
Anonymous More research regarding environmental risk factors is needed.
Janet Terrero Reversing cell damage due to toxins
Jenna Moser Environmental risk factors are most important
Anonymous More research is needed, is there something in our environment causing autism.
Laurie I believe that with the advent of bioengineering, advancing bacteria with no way to stop it and birth trauma from the poison in the environment, many children don't have a strong chance of not being affected somehow.
Kathy My son has TSC, so that is how his autism happened. I wonder if our food supply and the GMOs and chemicals, processed food, food dyes have something to do with the incredible increase in autism. I think our environment and food supply needs to be thoroughly researched.
Michele Tryon Healthcare provider Environmental risk factors should be a priority in research.
Monica Monica L. Kounter Environmental should be top priority. Although genes play a role, I believe they are "triggered" by exposure to environmental toxins during pregnancy.
Shimika As parents we want to know if there is something we could have done to prevent this from happening to our child. What is it in our environment, especially in low income neighborhoods, that played a part in our child's diagnosis.
Anonymous There seems to be some influence if environment as what we eat should be researched. Processed foods, foods with high sugar and carb content needs to be studied as well as the effects on the child.
Anonymous Environmental risk factors
Jackie, Parent Environmental risk and higher rate of autism each year.
Suzanne kollar, Parent Environmental factors
Susan Morales I believe that much more research should be done concerning whether or not there are any clinically significant findings regarding the correlation or causation between diet and autism (i.e. gluten intolerances, etc.).
Tina T Environmental factors as well the FDA policy on allowing preservatives, artificial colors & flavorings and growth hormones just to name a few, in foods that are consumed.
Kimberly Matkin More research done on environmental and chemical issues relating to autism.
Warren Schaeffer Environmental risk factors
Jenny Keesee environmental risk factors.
Vicki Martin, Lakes Area Autism Network, Warsaw, IN What are the environmental risk factors? As a parent you hear this, but are never told what environmentally potential risks?
Anonymous It feels that there is a need to figer out the environment factors that is part of this disorder
Shannon, Mom to 3 boys with autism Environmental risk. This is the easiest one to eliminate. If pesticides or something environmental is causing it take steps to stop national exposure to those chemicals.
Stephanie Dahl, parent (2 children w/ ASD)what environmental toxins are causing or have caused this, and if they can be traced to manufacturing or man-made chemical pollutants, how will those entities be held responsible for the injuries
Serein LambertIt is a social disability, I think the research should focus on the social impact. Not just social skills training, but the long-term efficacy of specific skills. What of the best ways autistic people can be included in social life without trying to pretend they aren't autistic? What kinds of augmented communication is effective for both nonverbal and verbal autistic people? How can we measure and then decrease the discrimination against autistic adults?
Titarole of environment, microbiome
Christine DeHavenEnvironmental factors
Maureen Durkin, University of Wisconsin-MadisonUnderstanding the full range of effects of social, chemical and other environmental exposures on the developing nervous system.
AnonymousEnvironmental risk factors. Prenatal testing should be explored.
Patricia GaronResearch priorities to include the cause, factors, effective and affected measures to bring about solutions and support to the Autism community.Environmental risk factors to include all government, medical,education and Law-enforcement agencies to be informed and sensitive to the signs, actions and LACK of responses by autistic people.
Rita Pospisil, West Platte RIIThe first priority would be the genetic and environmental risk factors, then gene-environment interactions.
Balvinder GhagEnvironmental factors
MRJVery hard as a parent to figure this out. Understanding if there are environmental triggers would be extremely helpful.
Stephen D. Kette, Autism Policy Reform CoalitionNOTE: APRC intends to respond only to question #3. We extend this narrative to the response input spaces for the questions that follow. The Autism Policy Reform Coalition (APRC) urges a paradigm shift in research and funding priorities on Autism Spectrum Disorder for the new iteration of the Autism Research Strategic Plan. Our recommendations include three central elements: 1. Refocus emphasis on environmental triggers, factors, and susceptibility rather than genetic causation hypotheses. 2. Refocus efforts from prenatal development hypotheses to regressive autism in childhood. 3. Refocus efforts from emphasis on autism as a psychiatric disorder to a spectrum of physiological disorders, including appropriate emphasis on the frequently occurring additional medical morbidities in many cases of ASD. APRC does not suggest a lack of importance for genetic research as opposed to research, for example, on exposures to chemical and biological agents. Such exposures, after all, could be responsible for genetic mutations leading to ASD. APRC does not downplay the importance of understanding the potential for prenatal development in cases of congenital ASD. Continued in question #4. Objectively distinguishing this devastating disease from others associated with ASD should be a top priority. Children who regressed should be included into distinct registries for research. Then, the clinically relevant presentation and biomarkers that characterize regressive autism should be compared with known effects that follow exposure to candidate agents. Continued in question #5
Carol Fruscella, Parent and Legal GuardianEnvironmental issues need to be studied. ALL possible environmental causes that possibly trigger the onset of Autism.
Deborah D'ArcyI would like to see a more comprehensive examination of environmental toxins, especially pesticides and additives to our water supply.
Chanda JacksonEnvironmental risk factors including vaccines.
Andrew GammicchiaEnvironmental factors still need to be studied.
Angelique Higgins, parentIt is a mistake to focus attention solely on pre-natal development and exposures. Significant brain development continues to take place in the post-natal period, and this must be recognized when correlating environmental exposures, particularly vaccinations, to autism. Perform prospective studies across different ethnic populations, and including infants with a family history of autoimmune disorders, tracking response to vaccination, epigenetic changes, MTHFR gene and other immune genetic markers, inflammatory biomarkers, class II alleles known to be related to immune response, and the effect vaccination has on the microbiome over time. Test subjects after each round of vaccination for epigenetic changes to immune related genes, inflammatory biomarkers, and changes to microbiome in the gut, and correlate with ASD and its comorbid conditions. Make mandatory post-licensure vaccine studies in populations with family history of autoimmune disorders and/or de novo mutations of immune related genes, because current vaccines were approved based on studies which excluded this population.
Toril H. Jelter MD, MDI Wellness CenterResearch pertaining to exposure to non-ionizing radiation (wireless technologies and "dirty electricity") I have seen dramatic improvements quickly by lowering exposure dramatically

Need more research on epigenetic risk factors

Respondent Response
Cinda Walchli Epigenetics is fascinating in that it considers environmental factors that switch genes on and off and affect how cells express genes. This might account for periods of typical development and then a sudden stop or reversal in developmental functioning.
Anonymous The role of epigenetics, i.e., does early life trauma influence the expression of any genetic predisposition?
Roseann Schaaf epigenetics
Anonymous Potential role of epigenetics
Betsy Berman The role of epigenetics and the microbiome
Anonymous potential role of epigenetics is dangerous
Mary Leathers Epigenetics is a priority. Is it possible to flip the "switch" back off?
Jennifer Furlow, Autism Mom-Warrior I don't think epigenetics applies to ASD...I think it applies to Zika.
Michael Waddell, Saint Mary's College of Notre Dame, IN Epigenetics holds more promise for advancing our understanding of autism than the other areas mentioned, though gene-environment interactions and understanding the microbiome might have something to offer as well.
Anonymous Genetic predisposition coupled with environmental factors are the most serious areas to be researched.
Amanda C Nicolson, California Autism Center Genetic and environmental interaction/risk factors!
Nancy Cheak-Zamora, University of Missouri Gen-environmental interaction
Grace McCusker Gene-environment interactions
Howard Habler Gene-environment interactions.
Jacqueline M Ward Genetic and environmental interactions
Jennifer Skjod People are desperate for answers. Genetic and environmental risk factor needs to be addressed. More research needs to be done on pesticides, pollutants, and other chemicals and how they may impact those with certain genetic abnormalities.
Anonymous Gene-environment interactions
Jill Longenecker gene-environment interactions
Stacey Ireland, Parent Gene-environment interactions
AnonymousEpigenetic is such a new and interesting field. It would be great to consider the role of methylation patterns in autism
Cynthia McLaughlin-ShareEpigenetics is likely the key. You could focus on an advanced form of eugenics----as I've heard/witnesses professors have their certain alleles to watch out for or do sex selection...all of which I've seen. Then move on to the next flaw until you have nothing left but narcissistic psychopaths. Like Mengele.
Anonymousrole of epigenetics
AnonymousEpigenetics and micrbiome
AnonymousResearch: research should focus on epigenetics-- how our genes can be changed due to environmental factors. Also focus on researching SNPS and supplements that treat SNPS.

Need more research to better understand heritability and risk of autism in families

Respondent Response
Cathy, Parent/Conservator Again, why are some children genetically more apt to show signs of autism and others are not in the same family, same generation and at least one common blood line? ( 2 of 3 brothers have a child with autism)
Maggie Halliday Many children has "spectrumy" parents or a parent who hasn't been diagnosed and they don't recohnize it in themselves.These parents are Ill equipped to advocate or often properly care for their child.
Shannon D'Aquila, Parent genetic and environmental risk factors seem to be head of the class in this area. Though it is true the rise in autism can be attributed to a broader definition and better education for professionals to identify children at risk, autism is still on the rise. Since genes seemingly would not have been altered over the years unless mutated by some environmental issue it seems logical that there is some type of environmental component. I question why the research does not often include genetic testing for the parents for things like Celiac Disease or autoimmune disorders.
Anonymous Since it is my belief that Genetics, along with some form of environmental triggering factor, is the chief case of Autism I would like to see more "individual family tree" data compiled.
Brett Gilleo, Big Sky Therapeutic Services, PLLC Risk factors, especially for families that already have one child with a disability and are considering having a second child.
Allie Identifying the broader familial phenotype which often includes mental illness and other developmental differences that are not necessarily autism. Education, especially to the public about how vaccines do not cause autism,
kimberly lockhart It is too late for my son, but if I knew what had caused his condition I'd be better informed for having future children. I've known many parents who have more than one child on the spectrum and maybe if they knew what was causing the problem they could avoid it.
Simon Huebner Maybe it runs in families. If those families have a common pattern and can recognize it in their kin, they will be in a more advantageous position than if it goes unrecognized.
Melissa Diamond, A Global Voice for Autism Looking into any connections between trauma in parents (inter-generational/genetic trauma) and autism. As an organization we have seen above average rates of autism in conflict-affected communities around the world.

Need more research on the interaction of genetic and environmental factors

Respondent Response
Christy Chapman I feel that risk factors are a combination of genetic and environmental factors. Maybe these individuals have some genetic predisposition and it is "turned on" by the environment. More research should be conducted in order to put preventative measures in place.
Anonymous Research: microbiome, gene environment interactions Policy: insurance coverage for IV chelation that helps take the toxic load off the system balanced against risk factors. how can you have risk factors when you do not know the triggers or causes?
Anonymous Public understands mood disorders are linked to possible ASD in progeny. Increase research into environmental triggers in genetic predisposition.
Julie Johnson Coulter, CoulterWorks Focus on gene environment interactions.
kathleen dugan, parent of twins with autism gene-environment interactions should be studied
Leslie Fox, US Department of Education - OSEP I think understanding the gene-environment interaction is significant not only for early detection and prevention but to illustrate that this relationship continues through the lifespan and early, effective intervention is critical for supporting long-term child and family outcomes.
Philip Spottswood, ASBG gene-environment risk factors.
Trish Bawn gene-environoment interactions
Anonymous I think that understanding the gene-environment interaction is the biggest priority
Toni Poh, Educator Gene environment interactions
Suzanna Dillon gene-environment interactions
Jennifer Burke, parentgene-environmental interactions
Kayla Weant, Prosper Independent School District Gene-environment interactions
Margaret Gene-environmental risk factors
Emily RyanGene and environment interactions
JessicaGene-environmental risk factors and interactions

Need more research on genetic risk factors

Respondent Response
Alexandra Tien, MD Genetic risk factors
Barbra Lippenga I believe that Autism is genetic because my husband and several of his family members have ASD
Kirsten Sneid, Founding member of Autism Society of the Heartland, Bi-State Autism Initiative, Advisory Board of K-CART and former Advisory Board member of The Thompson Center at MU Never in the history of mankind has there been a "genetic epidemic". We must find the factors that have assaulted the development of our children. The numbers are too large to ignore.
Ellen Maurer The simple answer is that some autism is genetic. Autism, like schizophrenia and mood disorders, includes many syndromes. Indeed, we should probably speak of the “autisms.” Some of these autisms are single gene disorders, such as Fragile X, tuberous sclerosis, and Rett syndrome. While these rare genetic disorders account for less than 5 percent of children within the autism spectrum, children with any of these disorders are at high risk for autism, roughly a 30-fold higher risk than the general population and higher than any of the other known risk factors. Recent genomics research has discovered that many children diagnosed within the autism spectrum have other genetic mutations that have not yet been designated as named syndromes. Each of these mutations is rare, but in aggregate they may account for 10 - 20 percent or more of what we have been calling the autisms National Institute of Mental Health Directors Blog April 4,2012
Linda Austin I know some think that it is from being vaccinated and I feel there may well be some truth in that, but after doing our family tree and getting to know more about family members I think there is a greater link in genetics.
Bonnie Polakoff If genetic risk factors can be identified, that would be a huge step forward.
Anonymous Yes the genectic factors are the top of the list for healing properly fm what i hsve been told why isnt any of these authorized for treatment?
Anonymous genetic studies. Recently a very helpful genetic test resulted in finding which psychiatric drug is genetically compatible to an individual with depression and anxiety. The results were accurate in the the long history of the individual's experience with trying out different meds to help. This saves time and money.
Anonymous Genetics caused autism. Ignorance caused adults to be pushed off the service cliff. While it is important to recognize autism in children for the benefit of early intervention and educational aspects, it is just as important for autism in adults to be acknowledge and for them to have continued access to services in all aspects of life so that more of their caregivers do not have to worry so much about what will happen if they die. 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.
allison velarde Genetic research will be important in determining what is causing any mutations that can effect a child.
Anonymous Genetic factors
Dean We know genetics plays a part, but what causes the trait? Is it when certain genes are turned on/off? Is it a type of mutation? Given that Autism expresses itself on a spectrum and that not everyone with the genetics gets Autism...could a mutation pattern explain this?
Delores Goneau Genetics
Gillian Pilcher, Parent of 2 with high functioning Autism I believe in our case genetic factors are the cause of autism in our family. I would like to see more research on genetics.
Loreen Booker Brown, Career Veteran in the field of ASD, AND DD populations genetic risk factors are more important then environment. There has been some association found in genetic links between children and parents but a greater focus is needed, Additionally, the home and community environment produces both negative and positive impacts i.e. the education arena needs greater policies to address students individual academic needs. However, services differ too much from state to state. If the Lanterman Act should be the model for all 50 states. Currently, southern states provide the least amount of resources to the ASD and DD population. The lack of social workers or case managers to monitor services in the academic arena is limiting these at-risk students.
Anonymous Genetic risk factors
ODESSA Changes, genetic information. What family can do and where to go for information.
Pat McCullough what causes it and how can be prevented. Is it genetic and do girls adapt better than boys. If so, why ?
Tamara Ratley, Principal at CEC-North genetics is certainly a factor- I have several siblings in an intensive program
Pamela Blankenship, Parent/Grandparent of children with ASD While I am not sure that there is a single "cause" for ASD, I am concerned that if such a genetic variation can be identified, then a certain segment of potential parents will choose to quickly abort a fetus carrying the variation. This mindset can lead, in turn, to this sort of thinking: "well. you CHOSE to have this defective child, so you're on your own to provide for him/her."
Dr. Cheryl Mendelsohn, private practice and Cause CafeGenetic research is key. I believe screening for possible carriers should be made available to all people who want to take advantage of it prior to having children. That said, more needs to be known about what genetic markers show the possibility of giving birth to a child on the spectrum.
AnonymousI do believe genetics play into having a child with autism. But is there a way to find out if you have the gene? Do both parents have to cary the autism genetics for a child to be born with it? I grew up in an era where food processing became the norm and my mother bought as much groceries with food stamps and blue stamps and discounts, did this affect my body chemistry that would weaken or strengthen the autism genetics? We need alot more research from the 50's through 70's era that would reflect if there is an increase in children born with autism on all spectrums, not just the severly disabled.
Katherine Hall, Autism Society of Northern VirginiaI don't agree that autism needs to be prevented, but it would be nice to know the genetic factors that cause it.
LISA, Special Educatorgenetic risk factors. I believe that "true" Autism has no cure.
Rachael, Educator/ParentAutism is a neurological disorder. There needs to be more research regarding the genetic factors that causes ASD. While the medical community has not found a common gene this does not mean it is not genetic. There are no environmental risk factors discovered.
Andrea Colburn, parentContinued study of genetic markers for those who are later diagnosed.
Linda Yin Lee, Self employed pediatric occupational therapistI believe that research to identify genetic links is important, but how can we tell how important this is until we know more about the causes of autism and where genetics fits into the picture.

Need more research on immune and metabolic risk factors

Respondent Response
R.Walker Immune factors---viral/bacterial mostly in early pregnancy. The fetal immune system does not destroy but is more likely to tolerate possible bad actors in the first three months. http://raggette.blogspot.com/2011/12/congenital-rubella-syndrome.html (My blog, my research, my opinions.)
Ms. Elizabeth Taylor Why are TITERS test of an 8 year old not having any immunizations since 1yr showing skyrocketing levels of immunity in some results and all results above the immunity levels that would make it unnecessary for re-immunization??? Have these results on record conducted by Duke University Med Center 1997.
Leslie, MarykMy son regressed at 19 months-- not too long after his immunizations. I think wellness checks should include biomarkers, gut testing, etc.
AnonymousAs 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.) 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.)
AnonymousResearch and assess the maternal immune system for things like Candida yeast overgrowth...the mother's compromised immune system could set the stage for a compromised immune system in a gestating child.

Need more research on maternal and prenatal factors

Respondent Response
Clarissa Kripke, MD, University of California, San Francisco Maternal age.
Heather Rocha In my case, I had twins, preeclampsia, anemia, c-section, 35 week delivery.
Rhonda, parent of Asperger's child If you interview mothers of Aspy kids, you will often find a common thread of maternal stressors. Many of them are personal such as relationships or work-related stress that may be difficult to research because it's so personal. If my doctor would have told me that the frequent illnesses I was having (cold, flu) could be related to stress and could affect the health of my baby, I would have missed more work and rested more. I didn't know. Genetic predisposition is obviously an issue here, but what about the always increasing number of working mothers, who work the entire time they are pregnant, in increasingly physically and emotionally stressful jobs? I banked my sick days for a sick child, not realizing that I needed them as much before delivery. Socioeconomic connections to increasing autism numbers may be just as related.
Cheryl I would say that the study of the children whose parents used drugs for depression and other mental health issues. How many have children that are identified as being on the spectrum
Dwight Jennings Need to check for CMD in mother and child
Cindy Fogle Research and results of the effects of cord blood, prenatal effects that could contribute to an ASD diagnosis, and connection of ASD to other psychological issues (i.e. Tourette's).
Eileen Nicole Simon, conradsimon.orgFetal heart valves direct blood to the placenta from early in embryonic life. At birth, these valves must close, and blood flow to the lungs established. This does not always (or usually) occur at the instant of birth, and it cannot be forced by clamping the umbilical cord. Textbooks until the mid 1980s taught that pulsations of the umbilical cord should cease before it is tied or clamped. Circulation to and from the placenta continues after birth, until blood flow through the pulmonary artery is fully established. The first "midwifery surgical clamp" was described in the Lancet, May 20, 1899, introduced to promote hygiene, with the standard instruction to wait for pulsations in the cord to cease before applying the clamp. Clamping of the cord for blood collection began in the 1930s, but obstetric texts still taught that pulsations of the cord should stop before clamping. By the 1980s the instruction changed, and clamping of the cord immediately after birth became standard procedure. This is a clear medical error. The fetal heart valves must be allowed to close before blood flow through the pulmonary artery can be considered adequate. I remember learning this is 10th grade biology back in the 1950s. REFERENCES: Starr, DP. Blood: an epic history of medicine and commerce. New York: Alfred A. Knopf, 1998. Frischkorn HB, Rucker MP. The relationship of the time of ligation of the cord to the red blood count of the infant. Am J Ostet Gynecol 1939; 38:592-594.
Alicia2) The MCHAT should be a standard part of the ECI program. --- We wasted a year trying to do speech therapy with ECI, when he really needed intensive ABA. ---- A huge priority should be made to helping pregnant women maintain proper gut health and supplement as needed for MTHFR gene mutations. Folic acid doesn't cut it.

Need more research on the role of the microbiome and gastrointestinal risk factors

Respondent Response
AMINAH LUCIO, YONKERS PUBLIC SCHOOLS the potential role of epigenetics and the microbiome
Anonymous Are there added or lacking bacteria exposures during pre-birth and early baby years that could be influencing autism development?
Anonymous Ways to test the microbiome for certain things and treatment for issues.
Nathaniel Geyer, MS There are a large number of people with autism who have digestive issues in addition to neurological issues. This leads me to consider that it might have a digestive system etiology
Victoria Ekstrand, University of North Carolina -- Chapel Hill More funding of the microbiome's role in ASD and gastrointestinal distress; gut/brain connections for both causes and future therapies. We need stronger messages to legitimize this research as well. Wakefield's research was flawed; but the gastrointestinal distress of ASD children was and is very real. These two messages are confused in the policy debate.
Kelly Soisson Definitely need to understand the microbiome and its role in autism. Need some studies and some trials on this.
AnonymousWe know that the microbiome affects our brains....look for solutions to the break down in brain functioning when our guts are unbalanced. Research: research should focus on epigenetics-- how our genes can be changed due to environmental factors. Also focus on researching SNPS and supplements that treat SNPS.
AnonymousI'm very curious about microbiome issues.
Lydia Huntermicrobiome and also the link to infections of viruses such as microplasma
Mark Justin Draycott, Parent of a person diagnosed See previous answer to previous question. The need for further research with respect to the human microbiome is enormous and very pressing. One particular area of inquiry should be the potential effect of antibiotics administered during infancy and early childhood on the micro-biome and the extent of its correlation with the rising level of ASD diagnoses. (As well as the possible effects to the children from antibiotics given to nursing mothers). Two areas for continued research: 1) the micro-biome in the human gut, particularly the effect of antibiotics on the gut, including, for example, the role of microbiota in the gut with respect to production and modulation of serotonin levels and other substances that affect a persons ability to self-regulate. 2) ways to help persons with oral communication deficits (either non-speaking autistics, or persons with limited speech) use devices or other non-oral methods to communicate.
Kerry Lane, Palm Beach Autism InstituteThe GI microbiome is influenced by yeast producing Gliotoxin. Black lives matter, who have genetically decreased levels of Glutathione. Most Autistic children have deficiency in glutathione, Both oxidized and reduced. Research should clarify how this comes to pass, other than the role of Tylenol, known to deplete glutathione, In this pathology.
Marcia GrayI have several friends who have had their pediatricians brush off concerns or even pull back on a suggestion of possible issues ("oh, she's now speaking at three, so you have no reason to worry about her late physical milestones, gastrointestinal issues, sensory issues or interest in peers").

Need better methods for testing contributions of risk factors from multiple domains to better understand risk of autism

Respondent Response
Anonymous Genetic testing, particularly parent/child and child/sibling seems of vital importance here. The likelihood that ASD and HFA are passed from generation to generation seems reasonable as a method for determining which kids are most likely to have issues, and could lead to identification much much earlier.
Anonymous Medicaid doesn't cover genetic testing.
Melissa Sigel It might be interesting to do genetic testing on the parents of children with autism when that same testing is done on the parents. This is likely already happening to some degree. I feel like the study of epigenetics will yield very interesting results as it relates to Autism Spectrum Disorders.
Robert Daniels, Children's Clinic, LLC We know that ASD clusters in families. What is necessary is to translate that knowledge into genetic tests that result in the efficient use of treatments known to be effective for certain subpopulations who share similar genetic profiles. In this way, treatments known to be less effective for some genetic profiles can be used less often, and those known to be more effective for those genetic profiles can be used more often. This is already utilized in psychotropic medication for major depressive disorder.
Wesley Harrison Meta data is important to research. There needs to be a way to collect data from the many people who are affected by autism regarding the many factors that may have contributed to the cause of autism in their case. One possibility would be a questionnaire to be well publicized, easily accessible and widely distributed to be voluntarily completed by parents of autistic children. A list of yes/no questions about the parents’ health histories, the history of the pregnancy (i.e. did you take prenatal vitamins?) and short answer questions about the mother’s history (i.e. what medications did you take shortly before or during pregnancy? where did you live? what health issues did you have before or during pregnancy?) and perhaps questions about family health history. There may also be a check list of environmental factors that would be useful to researchers. Computerized surveys could identify patterns that inform the direction of research. At the least, such data would raise questions. An opportunity to add information at the end of the questionnaire could also be useful. A computer program could scan for words that keep coming up in comments.
Donna Miglino, Parent Studies need to have a better basis than "process of elimnation". It is a laughable process that currently only points fingers at parents.
Anonymous, Behavioral Specialist consultant More research needs to be done as to causal relation. Also, more outreach to perspective parents as to known issues that can affect neurological development.
Alexander MacInnis, Stanford UniversityCausation does not mean that one factor alone is entirely responsible for the outcome. Rather, there is generally a set of component causes, such that if any one of them is not present the outcome does not occur. Genetic factors are often viewed as potential sole causes, however the evidence so far is that they are not, while GxE, or GxExTime interactions may be significant. Component causes are closely tied to prevention; if a certain factor is not present at a certain time then the outcome does not occur. It is feasible to study prevention of ASD in terms of some exposures. High quality research on some factors could be done using existing data, first to show whether prevention has in fact already occurred, and then to investigate which factors may have acted as preventions. This leads to investigation of component causes, which could be avoided. There has been some work published that indicates prevention may have occurred, however those studies are not completely convincing. On the other hand, the clinicians involved, as well as numerous others, may have more data that could be used in rigorous studies that could show solid results. There is not good evidence to support the notion that all causative factors must act pre-natally. Biological studies on several processes related to autism imply that at least some causative factors may act post-natally. Research should include post-natal factors and not be limited to pre-natal factors.
John Rodakis, N of One: Autism Research FoundationI believe we need more emphasis on sub-grouping, not just by severity but also by treatment-responsiveness. Many ASD children are responsive to diets, many are not. Rather than debate the universal efficacy of diets, I believe that this & other types of responsiveness could form the basis of an sub-group for further investigations. Fever & antibiotic responsiveness are other potential subgroups. I would like to see a greater distinction between mildly and those severely affected who are unlikely to be able to lead an independent life. With an emphasis for bx support and school & work modifications for the former and intensive medical research for the latter.
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.
Elena Kelley, MotherI think the biology might be way too complicated for someone like me. As a mother you always wonder about the why and how, but the brain is so complicated I don't know how you could explain all of these things to me. There must be some weakness in the system and there are so many extra insults from the environment, how to know which environmental aspects are affecting your particular child? Since the middle of the 1900's we've added so many chemicals to our foods, pesticides, herbicides, mother's milk is even polluted, so many different chemicals in carpeting, bedding, the air. Not to mention all the added signals in the air from radio, TV, cell phones, how to know which sensitivities our children have? The brain is a mass of chemical and electrical communications, correct?
Roseann Schaaf, Thomas Jefferson UniversityMore research needs to be done on the related symptoms of autism and interventions to address these especially on the sensory symptoms associated with autism. Parents report that these sensory symptoms impact the quality of life for them and their child. Some ways that sensory symptoms affect quality of life are by inability for parent to work outside the home, difficulty taking child into community to participate in activities, and management of everyday activities such as dental hygiene, tolerating being in the car, eating a variety of foods, or sleeping soundly. Occupational therapists are in the unique position to address the sensory symptoms of autism as well as to foster independent participation in activities of daily living. Research to test and support the development of occupational therapy interventions to 1) address sensory symptoms; 2) foster participation in daily living activities; 3) facilitate participation in social community activities; 4) prepare adolescents and young adults for worker roles would be useful. Grants to support partnerships of occupational therapist with other professionals to test comprehensive models of intervention are needed.
Stephen D. Kette, Autism Policy Reform Coalition Question #3 response (continued) We believe causation answers can be found using observation. We urge and support the validity of retrospective studies on toxicology, complex mixtures of toxins, viruses, bacteria, molds, spirochetes in the air, water and food. Studies on children during acute regression would be most helpful. Upon querying the autism advocacy community, we identified popular research interests under this paradigm. They include but may not be limited to the following: ' Mitochondrial dysfunction and autism ' Whole genome sequencing of cell lines WI-38 and MRC-5 ' Role of MTHFR gene polymorphisms a1298c and c677t in autism. ' Efficacy of treatment with MTHFR from birth to age four ' Biomarkers, inflammatory markers including maternal antibodies ' Total load theory (and its links to detoxification issues) ' Associated family history of autoimmune conditions ' Vaccines, components of vaccines, and manufacturing residuals ' Medicinals, acetaminophen, SSRIs during pregnancy, anesthetics, labor drugs ' Mother's mercury fillings, mercury in vaccines, alternatives to mercury ' Household toxins (e.g. mycotoxins, laminate flooring, stain-resistant fabrics, flame retardants, particle board furniture) ' Prenatal ultrasounds Continued in question #7 Response to question #3 (continued) ' Autoimmunity, including maternal autoimmunity ' Encephalopathy, concurrent neurological deficits ' Vitamin D insufficiency ' Variable ability to excrete toxins as a susceptibility factor ' Inability to excrete aluminum due to secondary hyperparathyroidism ' Enterocolitis as a comorbid condition in regressive autism ' Inorganic and organic particulates, nanoparticles, soluble components of complex mixtures, metals, organic and inorganic compounds ' Herbicides (glyphosate), pesticides ' Infectious agents including viruses, rickettsia, bacteria, algae, protozoa, parasites, and prions.

The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal

Respondent Response
Annmarie Andress CURE - research needed for a cure and / or medical pharmoligcal options to improve symptoms
Brittany, Adult with Autism I have a milder form of Autism that I do not want cured at all.
Dena Gassner, Arc US/ ASA I am not concerned about these issues.
Carolyn Hyman Yes, but it likely will not do anything to help the millions of adults with autism in improving their lifetime outcomes.
Cassandra Stalzer, Parent Autism is so wide-spread that even if we uncovered the key to prevention, it might require mass social, economic, medical, consumption and lifestyle changes that the cost would be too high. I would prefer to see research focused on alleviation of symptoms and adaptation.
Carla Charter, Disability advocate We need to concentrate less financial resources on research to fix autism and more financial resources to support families. We also need to be sure these financial resources are reaching the family and not jusst being used to fund agencies.
Jacquelyn Eder I think we need to move research dollars and attention to "what now" versus "why did this happen?". If that is a pressing issue for parents and caregivers, it should be addressed in a supportive and therapeutic environment. Let's spend research time and money on addressing manifestations of ASD and the difficulties they can cause.
Joan McCarty I think any focus on "prevention" is money wasted. People are different and while autistic people have many challenges, they are who they are and money should be spent on support and inclusive practices.
Karen Delaney Now that my son is 19 I don't really care about this - need help surviving day to day. My son is a fraternal twin - his intra-uterine envirnoment was identical to his sisters, the vaccine schedule was the same - even drawn out of the same vial and given by the same nurse at the same time. Their diets were identical, exposure to environment was the same, exposure to stimuli and toys, love and hugs were all the same. I am a believer in the idea that it was probably a genetic mutation of some sort and this is no longer a priority to my family
Kai, Autistic adult Autism does not need to be prevented, and this question is extremely harmful.
Anonymous Yes- this area is very important but how is the average struggling family with an HMO get access to exploring these topics wth a medical professional?
Karen McHale I am not fond of the word "risk". Again, we make it sound like autistic people are "diseased" and to be pitied. The large majority of people with ASD are at the higher end of the spectrum and lead fulfilling lives. I don't mind science studying autism but I think science needs to rethink the language they use. All of these different factors are important to study but only in the interest of science, not so much to "cure" autistics.
Kristy Powell This is an offensive way of asking this question. How would you feel if someone referred to your child as "what caused this to happen and how can it be prevented?" Contributions of people w ASD (or suspected ASD) can be found throughout history. The world needs all kinds of people. I am an adult who received a diagnosis a few months ago; about 6 months after the diagnosis of my 3.5 yr old child. I have led a successful and rich life and she can too.
brandon miller, autistic adult How about not eugenics. We're not sick, we're different.
Nan McVicker Who. Cares. Seriously? This smells of the "fate worse than death" view of autism as a horrid "disease" to be prevented at all costs - ignoring the abilities of autistic people who could be earning a living, paying taxes, and enjoying life - if only some of those funds were diverted to "helping people on the spectrum" instead of "preventing people from being born".
Anonymous This is far too much like a eugenicist goal for me to be comfortable with. Reality is that most likely increased diagnoses have more to do with redefinition than any new "causes". I'm in my 60s, I was not autistic, now I am after defitinions changed. I still need the help I never got and there is nothing useful for services now.
Resa Warner, Parent of 15 year old autistic son Please don't muddy the water with prevention. It is a secondary issue/separate question. Please focus on what caused this to happen. (I worry when I see past tense in this question that somebody thinks that this rogue wave of autism is over and it is now being masked by over-diagnosis)
Sarah Hunter I do not find this to be an area of interest and I do not find it relevant to the autistic community.
Sara Luterman, Self-advocate I don't think prevention is possible in an ethical way or is even a good goal. What is the government going to do for autistic people who already exist?
Becca Lory We do not need or want a cure. We need stigma reduction, understanding, and supports for the full course of the lifetime.
Alexandra Valentine, parent of a young man w/autism I believe all three are important to finding the "cause" but with so many with ASD I think resources should concentrate on supporting these individuals, medically, therapy etc.
Alanna Yuuup. Same as the last question. The only reason to waste money on that is to prevent autism. We don't want to be prevented. Instead spend money on improving diagnostics and services - stuff that will help actual autistic people in the real world not speculative research that can only used for eugenics. What causes this to happen and can it be prevented? Genetics cause this to happen. It's a biological diversification of the species; different types of brains exist for the same reason different types of human bodies exist. It cannot be prevented ever by any means and far more importantly it should not be prevented because biodiversity is actually a good thing and because autistic people are human being who generally like the way our brains work and we don't want to be prevented from existing.
Ann Hart We should focus on research that can inform treatment. Research that leads to terminations of pregnancies is very complicated morally and needs to be approached with EXTREME care.
Alice Ospovat This question shouldn't even be a priority: there is already a huge body of research on the causes of autism, and money spent on further research is money that isn't being spent on helping autistic kids and adults who need services. 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.
David Radford I think Autism is a result of the human species no longer participating in "survival of the fittest". We pass along and nurture genes that are not advantageous for life, therefore I don't think we'll ever prevent AS disorders, and must focus on early diagnosis, public education and improving social programs for families who can't afford private help.
sharon, 501-c-3 Momma Please focus people you have no idea reason or any concreted data on what Autism is or is not so slow your roll and spend monies for students living with autism/ID not till waiting lists are history should we spend dollars for the next crazed fad, which by the way you all make parents insane due to gluten free, ABA therapy newest greatest cure NOT be responsible if Autism Speaks is going to decide what is best and what is not i think they should be held accountable for monies our families bring to the table and from walks maybe they should have to kick percentage back why do we give them power and money and really no direct service given, no phones ever answered in NY location we need help NOW
J. Berryhil, Autism spouse and Parent Lowest priority.
Anonymous This is a terrible category that has wasted most of our research money and sidetracked scientists for years. It is offensive and speaks of eugenics that people are attempting to focus on causation and prevention of autism. There are so many autistic people out there who need quality research, and the research that makes an impact on our lives isn't research that tries to figure out why people exist and so how to make people not exist, but rather how to make people have higher quality-of-life. So this category has got to stop being top priority already.
Anonymous Decrease funding to trying to find the "reason" why. There is no one reason. More funds needs to be diverted to supporting individuals with autism.
Holly This is the same question just worded slightly different. I don't care if is genetic and environmental factors, the fact is these kids are here, and help is needed.
Anonymous While I think that it is important to be aware of genetic and environmental risk factors, I think there are more pressing issues than determining the cause of autism. Finding ways to improve the quality of life for those with autism should be of equal importance to seeking a cause.
Linda Bullock None of these are important to me. It is what it is.
Lucia Rafala, Parent Of child with ASD I think we waste time and resources looking for a cause. We need to move forward and educate and treat so that our children will be successful.
Leo Yarbrough JR Again the questions are directed toward trying to stop it. Well children have it - and there should be some effort on trying to help children that have it.
Sally Kirk I am concerned with the pragmatic issues facing families who already have children with autism.
Marty There needs to be more acceptance. The adult community is angered by research in this field. It makes people with ASD feel unwanted by society. No more vaccine studies. Stop wasting money. Vaccines do not cause autism. Better dead than autistic is a horrible thought and should never be addressed. Everyone has value.
Anonymous While I agree this research is important, I feel that the more urgent need is treating and caring for people already diagnosed with ASD.
Marty Weiner Again, too many dollars spent.....multiple causes---with all the money going into research, and where are we????
Mary Komperda, Parent I don't want all the money spent on this. It is more important to help the children and parents.
Nancy Roberts I don't even understand the what's or why's. I have just moved to acceptance of this is my child and want to do everything I can to help him understand and not feel alone or out of place.
Susan H. We are NOT sick! This is who we are! Hopefully for the next generation it will not mean a early death sentence from living alone for their life
Parvati I don't think this area is a priority. I think too much emphasis and funding is being given to risk factors etc. when there is not enough research and funding for treatment options, educational options for already diagnosed ASD kids and no roadmap for what to do for adults with autism as they age out of school.
Pamela Oguagha, Parent of young adult with autism People are spending so much money, time, etc., on early research that they forgot these beautiful young children GROW UP! Whatever the reason for autism, policies, and priorities NEED to CHANGE!! There is such a gap in services, etc., for transitioning youth and adults with autism, that we almost have to create/recreate our own path! And depending on whether this person is a child of color also matters. I am so grateful that I am an assertive Mama. I am so grateful that I look for and continue to pursue the goal to help my daughter have a FULL and FUN life! Because of my believe, my determination, I go out into the community and connect with various community agencies, etc. I find that my daughter and I are welcomed more, received and appreciated when I do this vs. going to a government agency. And because I am willing to work WITH them, these individuals, these community connections have been there, providing more support, longer support and transition for my daughter than any government agency. AND that's too bad!!
Anonymous again, the research prevention can be helpful, but it is the daily quality-of-life issues that need to take primary precedence. Though I think research may one day discover the cause and Prevention and/or amelioration of effects, I think the main focus & expense should be addressing daily function, behavior, quality of life for The many individuals on the spectrum here and now.
Anonymous Since we do not even know what causes Alzheimer or other brain based disorders this might be far fetched. I would love to know what causes Autism and how to prevent it, but I would like to see more money put towards helping those who are currently living with it. How do we know that even if we found a "cure" or "cause" it will help those currently diagnosed?
Andrew GibbsThese are not important research priorities. Funding should be shifted to programs that help struggling families.
Alisha Gomes, ParentThis is important but for me im curious but its not my main concern
AnonymousSTOP TRYING TO CURE ME, PLEASE. STOP TRYING TO PREVENT PEOPLE LIKE ME FROM EXISTING. AUTISM IS NOT A DISEASE. I'M NOT SUFFERING BECAUSE I'M AUTISTIC; I'M SUFFERING BECAUSE OF PEOPLE WHO INSIST THAT THIS MEANS THERE'S SOMETHING WRONG WITH ME.
AnonymousAs an autistic person, none of this matters to me as much as research into better services does. In fact, the idea of preventing autism through genetics makes me feel unaccepted and terrified. I do not want autism to be cured or prevented, I want acceptance and support!
ElizabethWe are spending way to much money on this. ASD has always been here and it always will be. We are just becoming more aware. We need services not false hope of prevention.
AnonymousI don't think autism should be prevented. It's a naturally occurring variation in human brains. Being autistic makes me the person that I am, and quite frankly I'm offended when people say autistic people like me should be "cured", because that implies that the way we are now is inferior and inherently bad. It's a much better use of resources to improve autistics' lives than to prevent those lives from being lived. Please, as an autistic person, listen to me: I do not want a cure. Being autistic can be inconvenient, it can be difficult, but it's who I am. Preventing someone from being autistic is the same as preventing that autistic person from existing; if I weren't autistic, I'd be a different person-- but I like being this person.
AnonymousAnswering the possible why question is good. Answering the 'why it matters' question is even better. Many families already invest far too much energy asking the same to no avail while the ASD person in the background tries to understand why deconstructing him is so important.
Jenni SherriffHonestly, I think there is FAR too much research effort being put into these topics. Autism is genetic. My family is perfect evidence of that. Judging from symptom lists and memories, my paternal grandparents were both autistic, my father and all five of his siblings are autistic to one degree or another. I have two cousins who are most likely autistic. My younger brother, also, is most likely autistic. My husband and I are both autistic and, not surprisingly, so are both of our children. Researchers need to forget about researching genetic aspects of autism and start worrying about other things, such as the tendency of autistics to have other medical conditions. And the tendency of employers to marginalize and unfairly terminate autistics for issues relating to their disabilities. And the tendency of society to consider us to be sub-human.
Kristen Brown, Parent of two ASD sonsGene-environment exploration will further validate that the cause of Autism is evolution. Personally feel insisting on finding prevention perpetuates Autism as something curable and feeds the social stigma it has. Such an idea of prevention is foolish. Wastes efforts to embrace and encourage those with Autism from achieving their potential. That is where such focus should be. Diagnosis, acceptance, encouragement, fulfillment is the best practice. This hope toward prevention becomes a failing path from diagnosis, questioning, parental guilt, pampering, unfulfilled. Sad, really.
Marsha Salome, Parent to 15yo son diagnosed with autism at 3I believe humans are evolving. I believe we are seeing effects of our forefathers working in coal mines, lead, asbestos, smoking, etc. I believe each person has limits of what will trigger a disease or affect them, how much of something will affect them, etc. We are all predisposed to something.
Paul RaichPublic invest in researching the causes of Autism does nothing to effect the lives of children and adults already diagnosed. As a result, I would rather see investment in strategies to improve outcomes for people wth the disorder. As a society, we can't throw their lives away.
RayAutism is not an illness. It is simply a different way of thinking, and therefore should not be investigated as if it were an illness. Risk factors are useless at best and harmful towards those who are autistic because it helps spread stigma of the condition. There should be little to no emphasis on this.
ElenaToo much funding and focus is placed on genetic research. Almost nothing is spent addressing the fact that autistics live 19 years shorter than allistics. The greatest damage that most of us experience is in the lack of understanding and empathy for what we struggle with. Public education!
Catherine Milian, Mother/Occupational TherapistPreventing Autism is as to say you can change the color of the skin you were born with. It doesn't work that way. The risk factors of Autism has brought many holistic doctors on the spotlight with little to no credibility. It makes us lose sight on the final stage as parents. It has caused an epidemic of parents to be taken advantage of. The risk factors can be so many just from our environment and to the lack of basic healthy foods. Why now has this escalated from a rare disorder to a very common known diagnosis?
Margaret WochThe science is not as urgent as the help for those who are already living with ASD, and need a home, better schools and protection from being exterminated by assisted suicide laws that don't deal their lives valuable.
AnonymousThis area should not be of concern, because prevention implies that there is something wrong with autistic individuals. We need to be focused on how to help make lives better rather than making fewer autistic people. Once lives have been improved, then this focus would be appropriate.
AnonymousI think this question receives perhaps more of the funding and attention than it should. I do think it's useful if it can prevent other families from living with autism, but for those who already are, it is of limited use.
Dr. C. E. Platt, AutisticToo much research funded. Need efficacy research on services and therapies FIRST, before we assume a disease model.
Angela GardnerFor a long time the focus and attention about autism had almost exclusively been about causation and cure. A group of individuals with autism spoke out saying they want to be seen, accepted, and respected as people with autism and NOT to be seen as a disease that needed to be cured. I agree with that position because individuals living with autism and how they felt about autism got lost in the debate about what causes autism. The debate about causation has gotten very hostile, negative, and divisive. I do not think it has improved the quality of life for individuals with autism but instead has become destructive leading to parents and the public to fear autism to the point where they will not get their children vaccinated to prevent other diseases from developing in their children. I feel the focus of research should be less on causation and cure since ASD is not a terminal or progressively degenerative disorder like MS or Muscular Dystrophies. The focus instead should be on how to support individuals with ASD living the best quality of life they can throughout the lifespan.
Carol Schoder KotasThere is too much emphasis on "how did this happen and can it be prevented". This implies that there is something inherently wrong with people with ASD. We need to shift the focus from the how's and why's to focusing on how to provide services to the many, many now adults with ASD who are aging out of transition programs across this country.
AnonymousMore of interest to the medical community than to the public and to family members.
Matthew Carey, Autism ParentWhile this topic is important, it is greatly overemphasized in the Strategic Plan and in funded autism research. My response here is brief for emphasis--we have so many needs in our community, we need to re-balance how we allocate resources.
Shannon Des Roches Rosa, parentWhile causation is a legitimate pursuit from the perspective of scientific curiosity and identifying best supports, the framing of this question has worrying eugenicist implications. Autistic people have always been part of our communities, and inheritance/constellation traits in the family tree are insufficiently emphasized in the research and education materials. Overemphasis on causation in research also directly underlies under-emphasis on areas that benefit existing autistic people. In addition, there is very little legitimate research (and much questionable or outright fraudulent) research in the causation area, so we need more rigor in evaluating such studies.
Allan D. HollanderIdentification of risk factors should be deemphasized as a priority. We know some broad-scale risk factors (e.g. age of parents, exposure to teratogens) but we also know that developmental interactions are highly complex with a wide variety of endpoints. Given this complexity, what is the likelihood that further research into risk factors will lead to identifying actionable changes to people's behaviors that dramatically reduce specific risks? I'm all for lowering the amount and presence of teratogens in the environment, but that's just sound environmental health policy, not anything specific to autism.
AnonymousI think causes are to be considered and explored but once you find a "reason" the main goal should always be to help parents get educated and supported.
Daphane Voltz, AdvocateLess focus on causes, more focus on older kids and adults as far as increasing access to services and helping them live to their own maximum potential.
AnonymousThe priority should not be to cure autism, and focusing on some of these aspects treats autism as a disease rather than a trait, which is insulting. That being said, the biggest gap in policy is recognizing autistic adults and assisting them in their everyday lives.

Need more research on the risk factors for co-occurring conditions in autism

Respondent Response
Anonymous Risk factors for mental health issues in ASD population as well as information concerning response to interventions. Responding to and evaluating suicide risk in ASD population is also a need. There had been little training in this area for mental health staff.
Jeanne Fitzgerald The government needs to stop denying the Lyme Disease epidemic and start to address it. The few doctors who actually try to find the cause of a child's symptoms of what people call autism find chronic infections, immune system dysfunction and heavy metal poisoning. How many children with autism actually have Lyme Disease or another chronic infection? The CDC's tests for Lyme don't even make sense as they rely on a well-functioning immune system. Please stop giving our kids silly labels and find out what medical issues are causing their symptoms.

Need more research to understand the role of vaccines in causing autism

Respondent Response
Multiple Respondents I suggest that the IACC asks the American Academy of Pediatrics (AAP) to retract their 2004 article: “Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan Atlanta” (DeStefano F, Bhasin TK, Thompson WW, Yeargin-Allsopp M, Boyle C. Pediatrics. 2004 Feb;113(2):259-66). Two years ago it was made public that Dr. Frank DeStefano, Dr. Marshallyn Yeargin-Allsopp, Dr. Colleen Boyle, and Dr. William Thompson, employees of the CDC, and Dr. Tanya Bhashin, a contractor, violated ethics of research/government policies in this report. In August 2014 public learned: (1) a protocol was established prior to the onset of the study, from which it was agreed from the outset not to deviate; (2) data showed a significant correlation between the timing of the measles, mumps, rubella (MMR) vaccine and autism, in particular in African American boys and children with “isolated” autism; (3) determination was made to change protocol with the intent of covering up the risk of autism following the MMR; (4) the authors intentionally destroyed study-related government documents to hide the autism finding; and (5) published paper omitted the race findings. For 10 years, the public, pediatricians worldwide, and policy makers were denied access to knowledge that delaying the timing of MMR vaccine in children reduced their risk of developing autism.
John Best, Owner, United States "Can you find out why anyone in this country is stupid enough to believe you [Profanity Redacted] liars? You [Profanity Redacted] have been lying about autism since this dishonest committee was formed. You are hereby ordered to tell the truth. Autism is caused by mercury in vaccines. Congress is 100% corrupt and has been bribed millions of dollars to cover up this crime against babies. You are hereby ordered to inform the public that the [Profanity Redacted] in Congress are intentionally managing the poisoning of babies to cause brain damage to them. This is treason. [Violent Language Redacted]. Take all of the [Profanity Redacted] mercury out of the vaccines, you [Profanity Redacted] liars. Award every victim of mercury poisoning $20 million for intentionally destroying their lives. Go [Profanity Redacted] yourselves."
Heather Price, Parent of two children with ASD MMR has been studied somewhat. Thimerasol has been studied somewhat. What about aluminum? What about the HUGE increase in the NUMBER of vaccinations on the current CDC schedule? What about studying the effects of environmental factors on children who have MTHFR? Mitochondrial issues? What about studying the fact that mercury was found in hair samples of children recently diagnosed with autism? Do all diabetics need the same amount of insulin? Do all cancer patients need the same amount of radiation? Then why is it acceptable to give the SAME vaccination, and the same vaccination schedule to a 4 pound newborn and an 8 pound newborn? Research: There is too much infighting between the vaxers and anti-vaxers. The vaxers wave away any concern about vaccines because “Wakefield was discredited”. What about the over ONE HUNDRED studies that DO show a link between vaccines and autism that are NOT discredited? Where is the study that will PROVE that vaccines do not cause autism----a double blind study that pits the rate of autism in the non vaxed community versus the rate of autism in the vaxed community. While we’re at it, why not pit the general health of the vaxed community against the non vaxed community? Where will we see more auto immune illnesses, more type 1 diabetes, more adhd? last time I wrote I gave you a link showing a study that every time a new vaccine with human DNA was introduced, the autism rate went up starting with children born that year. We need more studies along those lines.
Jennifer Hendrick, Parent 1. More flexibility with vaccination schedule...not abandon immunizations, but research if the vaccine needs to be given to children as such young ages (especially w/o age adjustment for pre-term and premature).
John Cullison Vaccines. CDC. Find it. #CDCWhistleBlower It's not the whole answer, but it's a huge part. You need to investigate the CDC's fraud about the link between vaccines and autism. Quit pretending like you care about autism. If you do not blow this wide open, we all, the community of parents, will know exactly who you're working for, and it's not the millions of children who are going to be vaccine injured. If you're not helping to end this epidemic, then you're actively making it worse. We know the CDC knows there's a link. #CDCWhistleBlower. Vaccines. CDC. Find it. #CDCWhistleBlower. An end to this epidemic, with or without your help. We will heal the ones we can. Many will die still lacking the capacity to fully relate to neurotypical human beings. It starts, though, by eliminating the causes. Fortunately, we know. The CDC knows. Find it, admit it, and let's move on.
Anonymous For starters i would split the MMR shot back into the 3 shots it was meant to be. My son was born early and mmr shot was the beginning of the end for him. What are the common themes involved with autistic children. Need to interview families get good data. Maybe a common issue.
Anonymous We need factual research on the potential toxicity of all the combined vaccines for the current vaccine schedule for children in the USA.
Michelle Guppy, Texas Autism Advocacy TOXIC INGREDIENTS IN VACCINES! VACCINES that weaken an immune system, NOT strengthen it! We know what is happening -- pregnant mothers are being vaccinated with toxic ingredients and babies are injected with neurotoxins! Congressional Hearings on the CDC Whistleblower. By watching the movie VAXXED You never have to treat what you never get in the first place, which is vaccine injury! Halt vaccine policy and make the vaccine industry pay for this entire generation they damaged! Where will my son go when I die? Who will pay that cost? Answer that. Prevention - do not vaccinate!
Michael Sweeney, Autism Dad and Real Estate Developer Here goes. Environmental factors and/or a vaccine may have triggered (not caused) a genetic predisposition to Autism. Again, my wife can cover the details but we are not crazy. My Dad was a prominent physician in Philadelphia that brought the Polio vaccine to Philly in the early 1960's. We are not anti-vaxxers. I want to see data on the cumulative effects of the 38+ vaccines on the CDC schedule, not studies on the individual vaccines. Again, I want to see a study on the cumulative effect of 38+ vaccines. We participated in the Simons Simplex Collection as a family.
NA VaxXed, Autism Media Channel Identification of sub-groups is a relevant topic best addressed by first asking the IACC to ask the American Academy of Pediatrics (AAP) to retract their 2004 article: “Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan Atlanta” (DeStefano F, Bhasin TK, Thompson WW, Yeargin-Allsopp M, Boyle C. Pediatrics. 2004 Feb;113(2):259-66). This article is fraudulent according to Co-author William Thompson, PhD, Centers for Disease Control. There is a great gap between all current research, services and policies because the fraudulent paper listed below has not yet been redacted. IACC should ask the American Academy of Pediatrics (AAP) to retract their 2004 article: “Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan Atlanta” (DeStefano F, Bhasin TK, Thompson WW, Yeargin-Allsopp M, Boyle C. Pediatrics. 2004 Feb;113(2):259-66). With the above mentioned article redacted, we could identify at least one objective causal association of autism. The "causal" part is that vaccines are toxic (mercury, aluminum, formaldehyde, monkey kidney cells, aborted fetal cells, et al. (see entire list here: http://www.informedchoice.info/cocktail.html). Autism is caused by a reduced inability to detoxify. It need not be simply isolated to the individual assuming the individual has impaired detoxification. Rather the fact that these "toxins" are administered in the most potentially toxic way possible, intramuscularly, and that in vaccines these toxins are administered in incredibly high doses and usually multiple at a time. Multiple vaccines have never been studied, but there has been no proven research showing that vaccines administered at the same time have any of the known affects of studies done on single vaccine administration. Healthy and quality of life is the most important research, service and policy issues. There is one study that can tell us this data and that is the unequivocal comparison of vaccinated versus unvaccinated populations. Analyze subsets of data including but not limited to risk of: autism, cancer, diabetes, food allergies, life expectancy, prescription drug use, alcoholism, mental disorders, etc.
Barbara Gregory Environmental risk factors from unknown ingredients in vaccines. Self affirmed GRAS ingredients are heavily used in pharmaceuticals and no information is given to the FDA. These ingredients which include peanut oil and nut oils are used in pharmaceuticals and are secret ingredients protected by international law.
Anonymous I would like to see a thorough investigation into the overall health effects for children following vaccines. At the very least a thorough comparison of large scale populations of both vaccinated and unvaccinated children.
Anonymous Most important gap in research - vaccinated vs unvaccinated study
Anonymous Environmental factors need to be the major focus of research. Epidemics are NOT genetic. Investigate in particular the many vaccines given to babies and children. Investigate the vaccines given to pregnant women, like the flu vaccine that frequently contains thimerosol (mercury) preservative. Please also investigate how the medical community can give real help to children affected. Their toxicological system is affected. Their gastro intestinal system is affected. Their immune system is affected. And their neurological system is affected. Right now the medical community is doing practically nothing, except prescribing drugs to mask symptoms. We need real help, AND INSURANCE COVERAGE for real treatment that will help our children to significantly heal.
Annette Kelly Research Merck and the billions they make on vaccines. Tell me that's not a conflict of interest. Parents are smarter than you think. Clean up the vaccines. It's really so very simple. It's not that parents don't want to vaccinate. It that we don't want to vaccinate with with the harmful preservatives in the vaccines. When will someone finally stand up to big pharma? Most important policy issue? Do not mandate vaccines. Research why Merck and others are so intent on keeping vaccines full of harmful ingredients. $$ at the cost of our children's health.
Beth Secosky Subpoena Dr. William Thompson of the CDC to testify about a cover-up of the relationship between autism and MMR. Subpoena William Thompson of the CDC who has claimed that there has been fraud at the CDC covering up the connection between autism and the MMR. Retract the American Academy of Pediatrics (AAP) 2004 Pediatrics article "Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan Atlanta" until there has been a full review of his accusations.
Anonymous We need to revise vaccinations. We need to look at the age and blood brain barrier. I wholeheartedly believe my son was affected by his vaccinations.
Jen Research on vaccinations and their role in ASD is very important. If vaccinations are indeed contributing to autism, it's critical to review the vaccination schedule for children and maybe change the ingredients in the vaccinations themselves.
LeTreese Jones The A.F.F.E.C.T Institute The most important issue to address as related to risk factors is the alleged correlation and presumption of immunizations playing a role in autism. We cannot continue to ignore these concerns.
Julie Curry, son with autism, 21 yrs old As a mother of 4, one who was "normal" till age 4 and to see a change in him socially, behaviorally, and in communication after 5 vaccines given at once, I certainly know from the mercury preservative. It altered his brain. Now he is on meds to control his behaviors, we have tried many medications. Of course I wonder what are all of these meds doing to his brain now, what will the long term side effects be. Labs are performed to check levels, liver etc. What does his future hold? I deal with this on a daily basis. Needs to be more assistance readily available to help. [Minor/Dependent Name Redacted] was typical child until received 5 vaccines at once at age of 4. No question where my son became autistic, thimerosal in the vaccines. All 3 other children fine. No doctor or specialist can rebuke that with me. It must be environmental...mercury, expand research as to why this is happening so frequently! It is such a puzzle.
Nancy Shaw Vaccinated versus unvaccinated studies. Secondary to the unethical actions taken by the CDC and their scientists in the 2004 study stating there is no link between the MMR Vaccine and autism, I am requesting that this study be retracted immediately. Vaccine studies need to be treated as regular pharmacological studies with appropriate placebo control, long-term and multi-vaccine studies. The CDC should not be allowed to conduct vaccine studies. Only unbiased independent studies should be done on vaccines and other medications .
Tammy Identifying the vaccines that cause ASD. Where autism originates from is it vaccines. If so why are these being forced on people. Research the vaccines get rid of what is causing ASD. Then there won't be the need for all this.
Anonymous Need to address the link between the accelerated vaccine schedule and the sharp increase in cases of ASD. More research is needed to explore the link between vaccines and autistic-like behaviors that result in ASD diagnosis.
Lesly, Parent Vaccines. Vaccines. Vaccines. The poison - heavy metals, GMO animal and human DNA - multiple Viruses, polysorbate 80, formaldehyde.....my son was damaged by the most Unnecessary and deadly Hep B at birth and set him on his course Ito autism. You should be comcerned as soon as the doctor pulls out the list of required vaccines. Compensate all of the vaccine injured children... STOP CAUSING IT - STOP THE VACCINE. MADNESS. STOP CREaTING THIS EPIDEMIC with VACCINES. #cdcwhistelblower. Suppoeana Dr Thompson. Make vaccine manufacturers liable for their product. Don't allow the CDC to investigate itself. Safety studies by independent parties NOT those who benefit financially from widespread vaccine use. MtHR gene mutation and those vulnerable To vaccine damage. Services must care foe our adult children who have been damaged by vaccines.
Jessica Russell Please retract the American Academy of Pediatrics (AAP) 2004 Pediatrics article “Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan Atlanta”
Jeanne Fitzgerald My daughter was born premature and given SIX vaccines when she weighed 3 pounds. Some contained Mercury. What in Gods name were these doctors thinking? Her immune system is so damaged that she will never be well.
Kay Chilton Please look into the whistle blower, William Thompson's information (data) and get congress to subpoena him for the records at the CDC that showed a direct link between MMR vaccine and early onset Autism. Obviously, there is a connection, and parents deserve to know the truth about all of its causes (especially ones that would be so easy to prevent in the first place). And then please expose the cover-up! Research the effects of all vaccines and their adjuvants (such as Aluminum and Thimerosal) on the causes of various forms of brain damage (with Autism-like symptoms)! Also specifically the MMR vaccine taken with 3 separate live viruses. Educate parents to the very likely link between the adjuvants in all vaccines (such as Aluminum, Thimerosal, and Formaldehyde) and the onset of Autism. That is completely preventable, and we should get the word out there, regardless of it hurting the Pharmaceutical industry. Parents have a right to know before vaccinating their "at risk" children! Based on the very informative documentary, "Vaxxed," we will see an overall rise in the diagnosis of Autism to the likely rate of 1 out of 2 children by the year 2032 (or thereabouts). Please take this seriously, and insist that federal agencies such as the FDA and the CDC do their jobs and release all of the data and research they currently are hiding (to the public) immediately! Maybe you could get enough donations to fund the actual research to compare specifically vaccinated children to unvaccinated children and the rate of diagnosis of Autism between these two categories. As the FDA, the CDC, and the pharmaceutical industries have no motivation or desire to do any such study at all. Because they already knew they won't like the results of those studies. Show the world that they are lying to parents of brain-damaged children daily!
Multiple Respondents, Multiple SourcesAny research program(s) should include representatives of parent's organizations who believe vaccines contribute to autism. A controlled study on autism risk among children given the recommended vaccine schedule compared with those not so vaccinated. A controlled study on autism risk among children given the recommended MMR vaccine and age effect, race and gender effect(s). A controlled study on autism risk among children given the recommended DTaP vaccine and age effect, race and gender effect(s). 2009 National Vaccine Advisory Committee (NVAC) recommendation to IACC . Independent researchers to review of the data was submitted in 2004 and 2011 to the Institute of Medicine's Immunization Safety Review Committee by CDC for data accuracy. Aluminum in vaccines may have direct association with the increased rate of autism. Increased risk of autism from the birth dose of Hepatitis B. Vaccines have been found to increase the risk of seizures, tics and mitochondrial collapse, all of which commonly co-occur in autism. Epidemiologic and Molecular Relationship between Vaccine Manufacture and Autism Spectrum Disorder Prevalence. To assess the public health consequences of fetal cell line (MRC-5) manufactured vaccines that contain residual human fetal DNA fragments utilizing laboratory and ecological approaches including statistics, molecular biology and genomics. Molecular mechanistic functions of vaccine-induced autoimmune disorder.
Amie NicoleLOOK AT THE VACCINES. LOOK AT THE VACCINES. LOOK AT THE VACCINES. LOOK AT THE TYLENOL FOLLOWING VACCINES. LOOK AT GLYPHOSATE IN OUR GMO FOOD. WE KNOW THE ANSWERS. WE ARE LIVING IT. LISTEN TO US. WE'VE SOLVED THE PUZZLE. THE CDC AND IACC JUST REFUSE TO PUT THE PIECES TOGETHER.
Claire DempseyVaccines
AnonymousIndependent research studies comparing autism in vaccinated verses nonvaccinated is needed. Studies need to investigate what in the vaccines are causing individuals to regress into autism and how can the vaccinations be made safer. Pharmaceutical companies should not be conducting their own studies due to obvious reasons.
AnonymousResearch needs to be done on Vaccinated individuals vs non-vaccinated, GMOs, pesticides, tylenol, Ultrasounds all need to be tested for safety. There is not one cause to autism. The vaccination schedule needs to be tested as a whole, all ingredients, long term outcome, not fast tracked FDA approval. It should be the same as other Rx drugs for testing. Removing National Childhood Vaccine Injury Act of 1986 is a start and having manufacturers liable for their products is absolutely necessary. Why is autism in the DSM? Make it a medical diagnosis as this will stop alot of the insurance problems. Admit this is a epidemic and properly fund it comparable to the AIDS funding and task force.
Lesly Weiner, Parent, teacheras mentioned in my comment to question 1 - MTHFR gene mutation definitely plays a role in the vaccine injury that we call autism. this and other vulnerabilities must be addressed and MANDATORY VACCINATION MUST BE STOPPED from my point of view - vaccine manufacturers and the CDC should pay for whatever god damned service we - the parent s of vaccine injured children require and request. i know thats a fantasy but they are 100% responsible for this ever increasing epidemic and they should be the ones paying for our children's needs from the enormous profits they make off of harming them. Housing and services for this generation's exploding population of vaccine damaged people who are aging out of school now - again - let the f...king CDC and Pharmaceutical companies pay for it. They have after all known for over a decade that vaccines cause autism, but chose to shred that data and perpetuate the lie as they continued to damage and kill our children.
Cathy Cockey, noneLine 13 on the vaccine inserts states these vaccines have not been evaluated for their carcinogenic, mutagenic effects or their effects on fertility. This needs to be done so that it can be determined whether or not they contribute to autism. I would like to see a study done on the vaccinated vs. unvaccinated population to see how the rates of autism compare, as well as their general overall health. Groups already exists, such as children of chiropractors and the Amish community. It would be a fairly simple, ready-made study to do.
Marie ArnoldI feel that parents should be, first and foremost, shown the vaccine inserts WELL before any vaccinations, so that there is INFORMED consent. They should also be allowed to have their child and/or themselves, be screened for the MTHFR gene, which is a marker that shows susceptibility to not being able to detox ingredients that are found in vaccines.
Dr. C. Rick Ellis, Spectrum Psychological and Forensic ServicesVaccine effects.
Michele Caramenico, parentVaccine research that can be trusted. The fraud at the CDC in regard to vaccine research and the skewed media reports make me distrustful of vaccines. My son has a vaccine injury and if I had better, more accurate information regarding spacing, elevated risk due to parents' allergies, autoimmune dx, I would have made different decisions regarding vaccines.
Sandra MarcusThe safety of vaccines needs to be addressed. Now that the 2004 study is being questioned as fraudulent. This should be done independent of pharmaceutical companies. Something is wrong. Too many parents have the same story.
Amie NicoleThe most important gap lies in PREVENTION. Vaccines can and do cause autism. If we had proper screening at birth to identify possible methylation issues such as MTHFR mutations we could identify children at higher risk of vaccine reaction and take a less aggressive vaccination approach. Additionally vaccinating a child on Day 1 of life for a sexually transmitted disease (Hep B) when the mother is negative is pure insanity. Especially when the aluminum content of said vaccine is many times the EPA allowable amount when adjusted for the weight of a newborn baby. Our overly aggressive vaccine agenda is DESTROYING THE HEALTH OF AN ENTIRE AGENDA. The CDC immunization schedule should immediately be reverted back to the 1980s BEFORE the exponential rise in Autism rates. Too many. TOO FAST. PLEASE DO NOT IGNORE THE VACCINE INDUCED AUTISM CONNECTION ANY LONGER. IT'S GETTING OLD. In the meantime millions of children continued to be harmed. AT YOUR HANDS. YOU KNOW BETTER.
Marie ArnoldSymptoms, biomarkers, disparities in diagnosis. In my observation the severe reactions immediately following vaccines have been being ignored, rather than seeing that here is a direct correlation of reaction following vaccines, whether it is hours, days or weeks following the injection(s). First and foremost, vaccinations MUST remain a choice, the parents choice, not mandated by any governmental agency or entity.
Carol Fruscella, Parent and Legal GuardianPlease do the one study that needs to be done. Please research the fully vaccinated population against those that are not vaccinated. Which population has the highest amount of Autism and examine why that is.
Eileen Henot***URGENT - July 29!!!**** Please provide input to IACC. You can copy and paste my notes for Question #3 Click here to submit your comments: All data from publicly funded studies should be made available to all via internet. Also rhogam/Rh negative studies should be prioritized as my personal experience indicates that, though we are a small percentage of the overall population, we are disproportionately represented in the autism/epilepsy communities. Could this be due to the rhogam given or do Rh negative mothers/children react differently to vaccines and their components? The CDC whistleblower indicated that the CDC is sitting on a lot of rhogam data. I want it to see the light of day. Molecular mechanistic functions of vaccine-induced autoimmune disorder. Increased risk of autism from the birth dose of Hepatitis B. A controlled study on autism risk among children given the recommended vaccine schedule compared with those not so vaccinated.
Chanda JacksonVaccines cause autism.
Beth ClayI believe the most important priority to consider in research and policy is the integrity of studies in which corruption is alleged. For 16 years taxpayer dollars have been used to fund studies looking at thimerosal, at the MMR, and to test products reported to offer benefit. Many of the studies are poorly designed, others have questionable practices and finally corruption is alleged in which government officials found a link in the timing of the MMR vaccine and autism, and intentionally changed the study protocol to hide the outcome; and went so far as to destroy documents. It is absolutely essential to get the research house in order immediately. IACC needs to hold a public forum to discuss these allegations, not hide from them. Second priority is studying the children, and treatments currently in use including dietary supplements and alternative therapies. It is impossible to identify a single most important topic - as all of them are at crisis level given the epidemic increase in autism rates in the last 20 years. First recognizing the national crisis that exist; Second identifying what you can do now in research, services,and policies to help families living with autism now is the most crucial. One major gap identified in the Unanswered Question study was that no one has ever suggested a follow up with families (more than 80) whose child suffered a brain injury for which they were compensated for in the Vaccine Injury Compensation Program; and also have autism.
Andrew GammicchiaThere had not been a definite answer to the question of vaccine safety and the link to injuries.
AnonymousPolicy issue? No forced vaccinations!!!! Health and safety.. First do no harm. Research Vaccines, research GMOs and research pesticides.. None of the research can be controlled big pharma or the government controlled by big pharm.
AnonymousI want a study done comparing autism rates in vaccinated vs nonvaccinated groups headed by an independent research organization without special interest funding the study. Biomedical treatments in individuals with ASD should also be studied.
nickNo research as to the necessity, effectiveness, or safety of vaccinations. Also. No studies of the overall health of vaccinated vs unvaccinated populations Mandated, escalating vaccine schedules, with NO government or industry liability equals the perfect crime, involving endless profit. While ignoring the detriment to public health accurate reporting of vaccine injuries, make this public!!!!!!!

Need less/no additional research on the role of vaccines in autism

Respondent Response
Helen Angela Mezzomo There is a great deal of mis-information, particularly the misconception that "the shots" cause ASD.
Anonymous Identifying the broader familial phenotype which often includes mental illness and other developmental differences that are not necessarily autism. Education, especially to the public about how vaccines do not cause autism,
Marty There needs to be more acceptance. The adult community is angered by research in this field. It makes people with ASD feel unwanted by society. No more vaccine studies. Stop wasting money. Vaccines do not cause autism. Better dead than autistic is a horrible thought and should never be addressed. Everyone has value.
Renee Portnell I believe genetic, enviroment risks facts and all the other above mention to see what really causes Autism. If they know what causes Dpwn syndrome and other kind of disablities when will they trully find it on Autism. I don't really believe its childhood shots, if it was then all children would be effected.
Lisa Settles, Tulane University School of Medicine--Tulane Center for Autism and Related Disorders Way too much money continues to be spent to debunk the vaccine "debate."
parent Please continue to support vaccinations for all children. There is still a lot of talk about this critical issue.
Cynthia McLaughlin-Share Vaccines were given SO much attention years and years of real science was lost.
Anonymnous My response would be almost identical to Question 1: Access to accurate information: - Much of public conversation about autism still circles around the myth that vaccines cause autism. Misunderstanding what caused it prompts parents to seek out ineffective or even harmful treatments. - Many families are directed toward ineffective or "magic-bullet" treatment options.

Multiple Themes Addressed

Respondent Response
Anonymous Grouping multiple vaccines together and whether thats safe with independent studies not funded by pharma. Looking at gmos. Looking at fracking our water and adding chemicals. Looking at pesticides. Looking at air quality. These are some of the areas we should look at that can contribute to autism. True independent research environmental causes of autism. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to understand the role of vaccines in causing autism
Anonymous Genetics, epigenetics and gene-environment interactions are all important targets of research. Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research on the interaction of genetic and environmental factors; Need more research on genetic risk factors.
Stephanie, Mother of 27 yr old autistic son Autism cannot be prevented. Unless you decide not to procreate. I believe autism is multi factorial but has a genetic-biological basis which is where research should be concentrated. Environmental factors may also play a roll. For example, I grew up in a state superfund site where as children we were screened for elevated lead levels. I was not affected, but my children were. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need better methods for testing contributions of risk factors from multiple domains to better understand risk of autism.
Autistic adult I want NO more money wasted on the false "vaccine-autism" connection. Vaccines do not cause autism. End of story. I'd like to see it studied more why autistic people have sleep issues so commonly and if things like weighted blankets really do help or if it's placebo. I'd also like to see more research on caregivers abusing autistic people and how we can prevent it. Themes Addressed: The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal; Need less/no additional research on the role of vaccines in autism.
Paula Roegge More research on genetic risk factors, and gene-environment interactions, please. Themes Addressed: Need more research on genetic risk factors; Need more research on the interaction of genetic and environmental factors
Anonymous Genetic and environmental risk factors should be researched. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Anonymous Identifying genetic and environmental factors may be important to help in understanding changes in prevalence rates. Research focused on prevention will not address the societal issues related to health, well being, employment, and quality of life for individuals and families supporting adults with ASD. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Chloe Dansinger, grandparent of six year old boy with high functioning Autism epigenetics and the microbiome Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research on the role of the microbiome and gastrointestinal risk factors.
Joseph Clark More affordable testing related to genetic, environmental and diet (nutritional) testing and analysis Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research on the role of the microbiome and gastrointestinal risk factors.
Danielle Oakes Mrs. genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Charles Doran genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Dwight Zahringer Environmental risk factors like Glyphosate and heavy metal(s) overload during vaccinations. There has been a lot of gene testing and funding for that area- which is still important. Priorities should include regression issues and environmental factors related to vaccines. How those correlate with gene modifications, etc passed from parents etc. Better overall testing of a child that receives a diagnosis; establish a protocol of blood, urine and gene testing suggestions a parent can partake on to get a clear picture of factors contributing. Themes Addressed: Need better methods for testing contributions of risk factors from multiple domains to better understand risk of autism; Need more research to understand the role of vaccines in causing autism
parent See "Gut and Psychology Syndrome" by Dr. Natasha Campbell-McBride. Following her protocol can end probably most cases of Autism. She has already done the research. Her recommendations must be followed. Vaccinations should be delayed and spread out. Infants should not be vaccinated at all and no flu shots, etc. given. We have to be aware and concerned from birth. Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research on the role of the microbiome and gastrointestinal risk factors
Eric Common, University of Kansas genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors; Need more research on genetic risk factors.
Frank J Kelly I think current investigations into genetics and epigenetics are well under way and well funded and making great strides. Thank you! Themes Addressed: Need more research on genetic risk factors; Need more research on epigenetic risk factors.
Anonymous Genetic and environmental risk factors. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Vince Environmental factors - #1 (yes, including vaccines) Microbiome - #2 (clearly a factor and important for potential treatments) Epigenetics - #3 (the only aspect of genetics worth pursuing) Enough w/ searching for the 'austism gene'. Too much time an money has been spent on this wild goose chase already. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors.
Hannah Reed, MD, Yale Child Study Center We should utilize mobile technology and wearables to encourage longitudinal research which starts during pregnancy to better test environmental risk factors. We should also look at multi-generational risk factors influencing epigenetic contributions. We need to support longitudinal studies which examine multiple domains of contributing factors simultaneously. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need better methods for testing contributions of risk factors from multiple domains to better understand risk of autism.
Holly, Occupational therapist Genetic and environmental risk factors are of priority because those areas may be able to be controlled for prevention of the disease. If I knew what genetic makeup caused the disease and I was a carrier I may decide to not have children. In addition, if environmental factors such as pesticides or beauty products that are ingested into the blood stream could be a cause of autism I wouldn't buy or use the product. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Kelly Ison Genetic and environmental risk factors are definitely a priority in research. This research is helping us open up new pathways to help children with ASD learn the things they need to learn to live in today's world. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Tonya Cummings, parent Okay, sure, it would be nice to know how to prevent autism, but since we don't know and won't know for sure for a long time, this is not practical. Genetic and environmental risk factors are mostly being guessed at right now. But, yes, if is useful at some point, then it would be very important to know. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Jennifer Muyot more research on genetic ang environmental factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Anonymous More research needed on genetically modified plants and food while mother is pregnant with children born with autism. More research on pesticides used on ALL food consumed from any country imported into the United States. More research on ingredients used in vaccines. Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research to better understanding environmental risk factors, including both chemical and social environments.
Janice Rushen, parent I guess genetic and environmental risk factors. I don't believe autism is caused my vaccinations. I think research needs to be done so that if their are environmental risks that factor in, maybe parents would be able to prevent it. I do believe it is genetic. Themes Addressed: Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments.
Karen Sanchez Environmental risk factors should be a leading priority. Most everyone agrees that there is an environmental factor at play but mainstream medicine is not following the science. We need to actually test vaccine safety and that of pesticides at the very least. Prevention of asd needs to be of utmost importance! Research to prevent it most be a top priority. Then treatment needs to follow. There is a lot of science that mainstream docs are ignoring. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome).
Kimberly Richards, Parent caregiver Genetic and environmental risk factors and how to prevent autism in some individuals, if possible. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Kathy Wilcox, ACCES-VR I do not believe that the increasing rate of ASD diagnosis is due to changes in diagnostic criteria alone; I do believe the prevalence of ASD is rising in our population. It is critical to understand some of the potential causes of this increase, particularly environmental risk factors and gene-environment interactions. The field of epigenetics may offer some insight into the rising rate of ASD, which also appears to have a hereditable component. Continuing to identify genetic and environmental causes of ASD should be on the forefront of research. Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors; Need more research on the interaction of genetic and environmental factors.
Kristy Barnett There are risk factors with any disability. Hopefully, if research is funded then maybe there is a way to prevent autism. Gene and environmental factors do need to be considered as potential risks. T-environmental, genetics Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Anonymous genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Anonymous Research the causes. Environmental toxins including, but not limited to glyprostate, lead, fluoride, arsenic, etc. Research medicines that trigger autism in susceptible people, including, but not limited to vaccines, antibiotics, etc. Research the safety of the current vaccine schedule. Research health outcomes of vaccinated vs unvaccinated, delayed vaccination vs CDC schedule. Research what may make some people genetically unable to excrete these substances from their bodies, like MTHFR mutations, among others. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to understand the role of vaccines in causing autism.
Amy Genetic & environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Anonymous epigentics risk factors environmental toxins microbiome immune disorders gene environment interactions Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors.
Roger Kulp Not as important to me as topics in question 2,but epigenetics,and prenatal environmental factors are just as important as the disorders covered in question 2. Most of the genetic causes of syndromic and regressive autism have not been identified.The same can be said of autism with intellectual disability.I know from my own experience whole exome sequencing can identify novel genetic disorders that can cause this type of autism.I wonder if there is some way to provide universal whole exome or whole genome sequencing to as many people with autism as possible. Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research on genetic risk factors; Need more research on maternal and prenatal factors.
Lisa White Genetic and environmental risk factors are key in developing prevention strategies. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Loretta Longo The most important research priority is the role of epigenetics, genetic risk factors and co-occuring disorders/symptoms. Trying to put the pieces of the puzzle together, from a scientific standpoint, will only help our children down the road and remove the social stigma that comes along with a developmental (or "invisible") disability. Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research on genetic risk factors; Need more research on the risk factors for co-occurring conditions in autism.
Anonymous The top priority is genetic and environmental risk factors. There is so much we don't know yet about the possible causes of Autism. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments.
Annette Bradshaw, Parent/Speech-Language Pathologist Any and all research is vital. Families want to know the odds of having more than one child on the spectrum Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome)Need more research to better understand heritability and risk of autism in families.
Safika Erselcuk Environmental factors - most importantly the heavy vaccine schedule and the affects of pesticides on foods have on epigenetics and diagnosis of Autism. Vaccines must be looked at by a group independent of the CDC. The CDC has a whistleblower scientist alleging fraud in a MMR/Autism study and as a result all of their vaccine studies should come into question. There are thousands of anecdotal stories which are very similar of children regressing into Autism after vaccination. We need to do a vaccinated/unvaccinated study which would be easy to do. We need to research how vaccines affect the immune system and immune dysregulation in people with Autism. We also need to study heavy metals, viruses/retroviruses, autoimmune conditions and gut issues in those diagnosed with Autism. They are not looking at vaccines AT ALL - studies pointing to safety have been fraudulent. A gap in services is that doctors do not report when parents see a vaccine reaction and then are left hanging when their child is diagnosed with Autism. Pediatricians are not doing their jobs. Parents left with little guidance on steps to take. This needs to be made more clear and pediatricians should be looking a co-morbid factors that are often present with those diagnosed with autism. They're not, they refer the parent to a psychiatrist, when most often there are physical issues that present and when healed helps the behavioral aspects. There is a HUGE gap here. My concerns start with the mothers health. Pregnant women should be screened for toxins like heavy metals, health issues that can affect fetal development like hypothyroid disease and genetic testing for genes like MTHFR which are linked to inability to detoxify, and absolutely no vaccines should be given to pregnant women. They have never been tested for safety in pregnant women and we don't know what the effects are. Women with high risk factors including other family members or children with regressive autism or vaccine injury should NOT have children vaccinated. Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on maternal and prenatal factors.
Seth Bittker Genetics is getting relatively too much funding. The twin studies that are used to justify these decisions are flawed. Much greater focus should be put on environmental factors and the microbiome. At the same time researchers in these areas really need to get rigorous. Themes Addressed: Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments.
Anonymous genetic and environmental risk factors Themes Addressed: Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments.
Anonymous Genetic and environmental risk factors as I firmly believe that the foods, impact of toxins in the environment, along with certain immunizations play a role with those with Autism. Themes Addressed: Need more research on genetic risk factors
Vanessa Tuley 1. Environmental risk factors 2. Microbiome 3. Genetic factos. We need to identify causes of autism. More research is needed on toxins and vaccines and their potential role in autism. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to understand the role of vaccines in causing autism
Anonymous the potential role of epigenetics and the microbiome Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research on the role of the microbiome and gastrointestinal risk factors.
Anonymous I think epigenetics and the microbiome. There are already lots of researchers working on genetic issues, but that doesn't help people in their actual lives. Themes Addressed: Need more research to understand the role of vaccines in causing autism; Need more research on the role of the microbiome and gastrointestinal risk factors
Star Ford, Divergent Labs Physical environmental factors probably exacerbate some undesirable conditions that often go with autism, such as IBS and other gut conditions, and anxiety and other mental/emotional conditions. Social environmental factors such as inaccessibility of spaces and institutions also can exacerbate those conditions. Research is needed to identify what changes we can make in our food, air quality and other environmental conditions that would alleviate symptoms associated with autism. Similar research is needed concerning changes in the accessibility of spaces and institutions to improve those same symptoms. Biological research is generally not relevant because it inevitably leads to selective abortion. It is essential for humanity to have autistic people because they are able to see outside the box in ways the other people cannot. As Einstein (a famous autistic person!) put it, humanity cannot solve problems using the same kind of thought that created the problem. So we should suspend bio research and actually celebrate all the differences. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
Anonymous genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors.
AM Genetic and Environmental Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Amy Schmid, Dartmouth Hitchcock Medical Center Environmental risk factors are most important because they can be modified. While genetic factors likely play a role, it does not seem as though genetic factors could lead to prevention. If there were a "genetic test" developed for autism in utero, this would likely lead to abortion of a lot of children. 1. Possible environmental causes of autism. I would like to be able to offer my patients more information about WHY the child has autism. They often are looking for something to blame (e.g., vaccines, in utero substance exposure, neglect during infancy). I would like to give them a real answer. Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome); Need more research to better understanding environmental risk factors, including both chemical and social environments.
Anonymous Order or Importance 1 gene-environment interactions 2 genetic and environmental risk factors 3 potential role of epigenetics and the microbiome Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on the interaction of genetic and environmental factors; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors.
Anonymous environmental risk factors including vaccination injury and side effects micro biome epigenetic and mitochondrial dysfunction environmental precautions. Environmental influences on autism, epigenetic, methylation and toxic exposures and biomarkers. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on immune and metabolic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to understand the role of vaccines in causing autism.
Anonymous Policy issues include whether or not autism is part of natural evolutionary forces in human beings. What caused this to happen? Comprehensive scientific research into what causes autism, considering all factors including head injuries. Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome)Need more research to better understand heritability and risk of autism in families
Anonymous Genetic and environmental risk factors. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Ellen J Brummel 50 / 50 for genetic and environmental risk factors and genetic environment interactions. I think that a holistic consideration is in order here, consider looking into yeasts, probiotics, chemicals, etc. I would say that 50/50, you should work on causes, immune and metabolic would be the most basic and practical Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors; Need more research on genetic risk factors; Need more research on immune and metabolic risk factors
Carol Bunten MD, The Vancouver Clinic This particular question holds the most power for me as a physician and mother of 2 affected children. Being able to identify causes and preventive strategies may provide the most hope for intervention for families and society moving forward. NO FURTHER RESEARCH DOLLARS SHOULD BE WASTED ON VACCINE STUDIES. I am particularly interested in advancing age of parents as a possible explanation for the increasing incidence of this condition. Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome); Need more research on maternal and prenatal factors; Need less/no additional research on the role of vaccines in autism
Cheryl Peeples The microbiome is HUGE and parents have been talking about this for years but haven't been listened to. We don't want anymore research devoted to genetics. People are trying to prove a theory that isn't there. The rise in Autism is due to environmental factors INCLUDING vaccines. To keep exonerating vaccines without a vaccinated vs unvaccinated study is preposterous. There needs to be real, unbiased studies outside of the realm of pharmaceutical companies and the CDC. The research is sorely lacking in environmental causes. We have an epidemic that can only be caused by environmental factors. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to understand the role of vaccines in causing autism.
Chris Lacey, Autism ALERT, Inc. I think we have done sooooooooo much damage to our food supply, that's it's hard to say. We don't get the micronutrients from locally grown foods grown in rich, fertile soils that we used to. Instead, we eat genetically modified, round-up-ready, commercial crops, processed foods, lots of chemicals, too much sugar, and minimal variety. This has severely messed up our microbiomes. Plus, studies have shown that newborns already have 100s of chemicals in their system from mom's exposure during pregnancy. Perhaps we've reached the typing point and our bodies can't cope anymore. And food is only ONE area where our world has vastly changed. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the role of the microbiome and gastrointestinal risk factors.
Cory Gilden, parent YES! All of the above! I believe epigenetics and the microbiome will unlock many mysteries about autism. Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome)Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors.
Anonymous peer reviewed science to validate the microbiome data there is not enough valid research on environmental and complimentary alternative treatments for families to know what to do. Have the courage to face the impact of profit making vaccines and pesticides on the autism epidemic . Themes Addressed: Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to understand the role of vaccines in causing autism.
Anonymous, Autism mom, Autism Society member Epigenetics and the microbiome. I think that the lack of medical knowledge about the causes of autism have sucked alot of attention away from what do we do with children, teenagers and young adults who have autism. Most research dollars are spent on genetics and very little on looking for medications/treatments/approaches that would help people and families that already have an autism diagnosis. Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors; The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal.
Anonymous The most important research priorities are genetic and environmental risk factors. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors.
Danny Raede, Asperger Experts Potential role of epigenetics and the microbiome Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
William Craig To me, the most important research priority should be early intervention, and finding out what causes a child to develop ASD. Is it pesticides used in agriculture, or seepage from illegal dump sites etc.? With the sharp rise it could be genetic. Maybe something I did as a child or teenager in regard to drugs that made her this way. Even though my first born is normal, bright, and healthy, maybe it was a genetic flaw in my DNA that skipped my son and manifested itself in my daughter. I do think epigenetics could be vital research,because finding out if it is genetic, and having the ability to turn the Autistic gene on or off would be groundbreaking. I am not that familiar with Microbiome (HMP) but Autism could be caused by microorganisms, in the environment. I just don't know. I would like to know why ASD is own such a sharp rise. This needs to be, in my opinion, the greatest and most important research priority. Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome)Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research to better understand heritability and risk of autism in families
Molly Whalen My personal belief is that their is a cause/effect with genetic and environmental factors. I would personally like to see more research focus on this target area. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous Genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Destiny, Mom of two on spectrum There needs to be more research into genetics and biological causes for symptoms. So many parents are falling prey to modern day snake oil salespeople. Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome)Need more research on genetic risk factors
Chris Genetic and environmental risk factors. The congruence of genetic and environmental factors dispositioning children to autism. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Elizabeth O. Morejon, AOTA Genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Erika Schron The environmental and medical triggers need to be figured out. There's no way that a 'genetics only' condition can be 1 in 10,000 in 1990 to 1 in 68 in 2014, there is something causing our children to become neuro-developmentally delayed with many biological medical conditions. A child does not go from being typically developing for 18mos-3 years and then start regression for no reason, there's a cause and we must find that cause!! There needs to be more research and treatment on the biological and medical needs of ASD. The medical and environmental triggers need to be figured out that are connected to the medical needs of those with ASD...the stomach issues, the seizure activity, food sensitivities and more. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the risk factors for co-occurring conditions in autism
Anonymous Research in to the causes and possible environmental factors causing autism. I wonder what environmental factors could be causing this. Also, is there a correlation between anxiety disorders in parents and autism in children. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to better understand heritability and risk of autism in families
K G I wish to have a understanding of what my child can expect if he has children. Genetics, prevention ect. Themes Addressed: Need more research to better understand heritability and risk of autism in families; Need more research on genetic risk factors
Anonymous Focus on Environmental risk factors, less broadly defined, e.g. chemicals or factors in the environment, vs. just "non-genetic". Likely to have different mechanisms. Env factors including pesticides, what specific aspect of air pollution, endocrine disrupting chemicals. Requires use of stored specimens or large cohort studies. Methods for examining mixtures of chemicals. How really apply GxE methods, despite all the talk about the need for examining these? Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors
Gillian Stein For us this diagnosis seemed to come out of nowhere. No one else in the family has ASD. I think there are many environmental impacts which we don't know enough about which impact the prevalence of ASD today. It is so difficult to tease out how much is environmental impact out verses parent/family mental health (Gene-environment interactions). Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors
Anonymous genetic and environmental risk factors potential role of epigenetics and microbiome Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Juergen Hahn, Rensselaer Polytechnic Institute All of the three topics are very important. I would rank gene-environment interactions and the potential role of epigenetics and microbiome as the highst priorities. Genetic and environmental risk factors would be next. Both of these are important, but the interplay between them is likely much more important than each one individually. Research funding is the most important issue, especially for fundamental research that improves our standing of the causes of ASD. While there are other initiatives that claim to study autism, such as the brain initiative or statistical analysis that investigates how significant the rise in autism really has been over the last few decades, these efforts will not further our understanding of what is underlying ASD (for example changes in the brain will likely be the effect of something else and not the cause for ASD; I understand that some people will disagree with this statement). Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome)Need more research on epigenetic risk factors; Need more research on the interaction of genetic and environmental factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Mariah Hahn, Rensselaer Polytechnic Institute 1) Gene-environment interactions, with a focus on methylation cycle, sulfation pathway dysfunction 2) Microbiome and immune system effects - in particular the gut-brain connection. 3) STOP investing money in science trying to show that "autism rates haven't really increased". Aside from being laughable, this approach is useless. It does nothing to help those afflicted with autism - which should be the focus. 4) Policy issues - it is important that policy makers begin to see autism with compassion and understand that it is not a solely genetic issue. It is also just ridiculous that the only therapy that has been shown to be effective in autism treatment (ABA therapy) is not covered by Medicaid (which is the only source of insurance for many children with autism). I can get play therapy, music therapy, and hippotherapy for my son through Medicaid (assuming I am blessed enough to find a provider), but I can't get the one therapy that might actually DO something for him. 5) Insurance companies currently find a thousand ways to avoid providing therapies for these children - the affordable care act has done nothing to ensure that ABA, OT, and speech services are available to these children and adults 6) I think law makers and the public need to be made more aware that we either pay for these children now (and possibly have them be able to function at some level) or we will be paying for 1-2% of our population to live in group living homes through Medicaid later. Themes Addressed: Need more research on the interaction of genetic and environmental factors; Need more research on immune and metabolic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Maranda Houston, Autism Resources & Support (HARS) I believe the genetic and environmental risk factors arena is large and affects many industries (e.g., medical, social, governmental, business). I hope research will one day be able to pinpoint at least 3 issues that scientist will be able to effectively argue and move environmental murderers (e.g., oil companies, pharmaceutical companies, etc). This is a world issue. A human issue. This area is so big and the factors are so many that I wonder if we will ever be able to pinpoint and move things back to a more healthy environment, biologically. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous Need to research environmental causes more than genetics. How are the chemicals in our everyday environment affecting this? How might our food supply be a cause? Look more honestly at vaccines! Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to understand the role of vaccines in causing autism
Heather Baylies-Grigoreas genetics environmental factors GMO related factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Heidi Stewart genetic and environmental risk factors: why can it vary so much including 2 children with same genetics (parents) and same environment: 1 diagnosed and 1 not in some families Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to better understand heritability and risk of autism in families; Need more research on genetic risk factors
Anonymous genetic factors, environmental factors - research re: food, immunizations. The causes behind autism and other disabilities and the prevention Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome)Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous Potential role of Epigenetics and the microbiome Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Irena Koshuk Genetic and environmental risk factors Gene-environment interactions Microbiome Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Julia Biagiarelli, Easterseals the potential role of epigenetics and the microbiome Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Jenn Carerros, Mom of a child with autism genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous I believe more research needs to be conducted and funds in the forms of grants should be provided so that research can be conducted to identify potential environmental, biological, and genetic factors that lead to and cause ASD's within the U.S. Population. I also believe that research needs to be conducted to identify the potential reasons why ASD's are more prevalent within males. I believe comparison studies can be conducted to analyze the prevalence rates of ASD's among specific racial and ethnic backgrounds of people and within various geographical regions throughout the country. Having all of this aforementioned information will help researchers and health practitioners gain a better understanding of the potential factors that lead to increased risk for people having ASD's and developing ways to mediate the risk factors associated with the disorder. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors; Need better methods for testing contributions of risk factors from multiple domains to better understand risk of autism
Jilene Chivell Griffiths Great concern over the potential role of epigenetics and micro-biome. Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Jim, Autism outreach fellowship Realy ? I know this response will be ignored since it is AUTSM SQUEEKS SERVAY BUT since you asked. ITS THE VACCINES !!!! And you know it !!!! Themes Addressed: Need more research to better understand heritability and risk of autism in families; Need more research to understand the role of vaccines in causing autism
Anonymous Overlap with response to question 2. - human mate choice research - ethical/moral eugenics - impacts of positive assortative/non random mating, including public awareness - genetic enhancement technologies - need multidisciplinary approach; sociology, healthcare, genetics, anthropology, evolutionary biology, psychology. - the (negative) societal impacts of positive assortative/non random mating and in the area of human mate choice variation need to become significant and major research areas. This is not limited to autism but includes psychiatric illness, addiction/substance abuse, obesity, violence/antisocial behavior. Need much greater community awareness and engagement of this topic as well as in ethical and moral eugenics (which can be in vivo or in vitro and phenotype or genotype based) and in genetic enhancement technologies. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to better understand heritability and risk of autism in families
Judy Ferry Rohlfing, M.S. Ed., Ivy Tech Community College - formerly public school corporations K-12 for 26 years I am very interested in genetic and environmental factors. I have read several studies where it seems that clusters of autism have occurred during times of high air pollution. I see higher numbers of autism during certain years of my teaching - and wonder if there may have been a similar such occurrence in our town. More importantly, if this is indeed found to be a causal factor, what steps can be taken toward prevention? Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Karen Zastrow, Parent Need research into vaccines and environmental exposures during pregnancy and after delivery. Themes Addressed: Need more research on maternal and prenatal factors; Need more research to understand the role of vaccines in causing autism
Ken Genetic and environmental risk factors. The risk is being normal and having to be the same as everyone else or some board psychiatrist will call you different and try to drug you. People are autistic, get over it. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous Again research is very important, and I would suppose then also that funding for such research is also very important. We need to know and understand more about ASDs. I saw a recent article implicating high levels of folic acid as a possible cause of Autism, and wonder about that. Research that discovers causality, rather that correlation, is very important. I wonder about the possibility of high levels of folic acid being a factor involved with development of ASD. Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome)Need more research to better understanding environmental risk factors, including both chemical and social environments
Anonymous Genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous More research needs to be done regarding genetic and environmental risk factors, epigenetics and the microbiome, Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Kimberly Williams Genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous Does the underlying brain and physiological pathology that produces autism also produce Attention-Deficit Hyperactive Disorder, high levels of anxiety and depression in autistic children, and a tendency to more extreme aggression and severe mental illness? What are the gene-environment interactions that contribute to the development of autism when the baby is still in the womb? What are the implications of this for genetic counseling? Can stem cells be used to replace whatever regions of the brain are damaged in autism? Themes Addressed: Need more research on the interaction of genetic and environmental factors; Need more research on the risk factors for co-occurring conditions in autism
Leslie Zevnik gene-environment interactions. Families with auto - immune diseases/markers and how environmental influences triggers those genes. Themes Addressed: Need more research on the interaction of genetic and environmental factors; Need more research on immune and metabolic risk factors
Lisa Geng, Cherab Foundation Why are there areas of the US and world higher than others? What are the possible environmental factors? Pollution? Should food be tested for heavy metals? Should there be warnings on processed foods that they'll lower a child's IQ? Avon Longitudinal Study of Parents and Children found "A diet, high in fats, sugars, and processed foods in early childhood may lower IQ, while a diet packed full of vitamins and nutrients may do the opposite, suggests research just published online in the Journal of Epidemiology and Community Health." http://www.bristol.ac.uk/alspac/news/2011/7.html What is the parents diet? What is the childs diet? Can a communication impairment be helped through nutritional support? If it does help is it because we are improving the health of the microbiome- the gut/brain connection, mitigating viral issues -a combination? Is it detox, or improved diet that helps? Using an integrative medical approach you can start with diet and go from there as there would be no side effects with improved diet. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need better methods for testing contributions of risk factors from multiple domains to better understand risk of autism
LorRainne Jones, Kid Pro Therapy Services Inc I am most interested in genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous All of the above. Dietary measures. Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome); Need more research to better understanding environmental risk factors, including both chemical and social environments
Mary Mom, teacher & advocate of children with autism Safe vaccination schedule, ear infections & safe use of antibiotics, gut issues. Safe vaccination schedules for all children to reduce false identification. Safe vaccinations & complications with allergies & immunizations. Safe vaccinations & not allowing propaganda to influence fear of kids with autism & lack of immunizations causing alienation/hatred. Themes Addressed: Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to understand the role of vaccines in causing autism
Michael Brackett, Easter Seals Genetic and environmental risk factors, Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Faith McGinnis, parent I would like to know why autism is in my family but honestly if its genetic we need more counseling (such as fragile x or downs type counseling) There is no preventing genetic predeposement or mutation. It is what it is. If environment plays a role it should be explored for prevention. 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.... More research into environmental causes such as geography, water supply pesticides. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to better understand heritability and risk of autism in families; Need more research on genetic risk factors
Melissa Friesl, parent I really think genetic and environmental factors need to be researched. 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. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous Epigenetics and the microbiome Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Anonymous Environmental risk factors- particularly, prenatal risk factors. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on maternal and prenatal factors
Marilyn Arons, Melody Arons Center of Applied Preschool Research & Education The genetic link needs further examination, as well as the interaction with environmental contaminants and food and environmental allergies. Themes Addressed: Need more research on the interaction of genetic and environmental factors; Need more research on genetic risk factors
Anonymous Genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Minerva Adame Most important research priorities for this question are epigenetics, parental genetics, diet, lifestyle, vaccines, and gut health. How can Autism be prevented? What is the root cause of Autism? If an individual already is labeled as having an Autism diagnosis, how can therapy and treatment best help them live their life to their full potential. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research to better understand heritability and risk of autism in families; Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to understand the role of vaccines in causing autism
Missy Wilson, Easterseals genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Michael Notaro, University of Wisconsin-Madison Knowing the gene-environment interactions and environmental risk factors gives parents power to help their child by avoiding risk factors and creating a helpful environment for that child. I would love to have this information to help my son! Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors
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. Themes Addressed: Need more research to better understand heritability and risk of autism in families; Need more research on genetic risk factors; Need more research on maternal and prenatal factors
Michael Ridgway Fining out the environmental and gene risk factors on interactions of epigenetics and microbiome. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Anonymous genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous Time to get the studies done on these epigenetic risk factors. We can no longer use the one size fits all vaccine - policy We must stop vaccine mandates as they violate informed consent and the doctor patient relationship and they prevent the move into individualized medicine and the proper use of epigenetic risk factors. we need a nationwide push to get as many studies as possible comparing unvaccinated with partially vaccinated and CDC schedule fully vaccinated children. If the CDC, NIH and the government would make this even half the priority they gave to Zika we would have our answers in months! with 1 million autism/ ASD cases in the past 15 years in the USA - time to sound the alarm and keep sounding it until we have hundreds of studies looking at this long term and properly. 1. vaccine - vaccine injury 2. vaccine - autoimmunity issues (ASIA) 3. toxins and autism or developmental delays 4. MTHFR and other SNP's that put children at higher risk for damage form toxins and vaccines. Take vaccine safety out of the CDC - they have conflicts of interest. Make sure William Thompson is called up to testify (whistleblower on CDC research issues) Themes Addressed: Need more research on epigenetic risk factors; Need more research to understand the role of vaccines in causing autism
Patty Hooper More information on genetic and environmental factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous Researchers do not understand what causes autism. Some genetic mutations have been linked to it but there is not a definitive diagnosis. Autistic children fall across an extremely wide spectrum. The most important research priority are identification of the genetic and environmental factors that contribute to autism. Once the root factors are identified, it will be easier to understand the neural impact and to then develop treatments and therapies. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Kristi Stockdale, Parent I think this is also a key area for research; there can't really be a public policy on this topic until the basic science related to the genetics and environment are better understood. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymous epigenetics & the microbiome Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Steven Graff, Ph.D., Tri-Counties Regional Center, Oxnard CA understanding Epigenetics is critical. genetic markers needed. environmental causations [PBA, etc.] need to be identified. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on genetic risk factors
stanley scher, grandparent If early screening based upon bio-markers, neurological data and family history present high risk factors, then examining maximizing environmental strategies at an early stage is paramount to minimizing behavioral deviations. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to understand the role of vaccines in causing autism
Shelley Tzzorfas Epigenetics and the gut Microbiome. When an infant is delivered healthy and receives a 9 or 10 on the Apgar S and the receives the Hepatitis B shot on the first day of life there are significant adverse effects that must be recognized. This is especially true for male babies. Within hours they suddenly develop Jaundice. They lose the ability to suck and instead 'Tongue thrust." That is, they push out their tongues while trying to feed. Many begin to develop rashes and or Eczema. They begin to develop serious diarrhea and colic. As they continue to grow they arch their backs when you try to pick them up. If doctors, nurses, and parents could learn the signs of this early entry into Autism, then the long term outcomes could improve. This Hepatitis B shot was given to newborns in 1991. It is an illness that babies could only get if they are having unprotected sex, an IV drug user sharing needles, or if the mother was a prostitute carrying the disease. ..But doctors already know which moms carry it. Instead of offering it to high risk-they give it to all babies. (There is a tiny risk if a baby is getting a transplant). Once the vaccine maker's were given blanket coverage, Zero Liability-they chose to force it on newborns. 1991 therefore marks the beginning of the Autism Epidemic where 1 in 45 have it, 1 in 25 boys, and now 1 in 18 toddlers. Aluminum, thimerosal, formaldehyde, cells of pigs, dogs, monkeys, chicks, cows (Containing Leukemia cells too small for scientists to remove) peanut oils, msg, ammonium salts injected into children in the name of heath more than 70 times. How they compound and effect children all together. Provide families with vaccine choice, help them pay for detoxification if there is an adverse effect, Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to understand the role of vaccines in causing autism
Suz Swanson People need to look into the role that preservatives, smog, air pollution, chemicals and other artificial things effect people. They also need to look into the genetics and see if it can be traced back in generations Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to better understand heritability and risk of autism in families
Anonymous Genetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Tara McMillan Environmental risk factors including vaccine injury. The most important priorities are prevention-- Parents like myself have watched their child regress because of a reaction to a vaccine. We have been ignored by professional medical doctors, and nurses. Our children are sick because of vaccine reactions. The symptoms and biomarkers should include a reaction to a vaccine. The vaccine manufacturers have created this problem. They need to be held accountable and will be required to take care of the child for as long as they have autism. Please research the vaccine schedule, and review all the cases of children who have autism, and when they had vaccines. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to understand the role of vaccines in causing autism
Anonymous Epigenetics and the microbiome are HUGE. We NEED research in this area NOW. Not enough research is being done on the role of diet and environmental causes of autism. Certainly if the increases in diagnosis are increasing at the rates we have been seeing and we are continuing to see an increase in toxins in our environments, this needs to be examined thoroughly. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Teresa McCroskey, parent I believe that pregnant women not eating correctly, along with drug and alcohol abuse, and emotional or mental abuse can cause genetic and environmental problems for a fetus and cause Autism. Smoking for another. I believe people with the same bad genes can also cause and issue, but how do you know unless you are tested before you conceive. 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. Themes Addressed: Need more research on genetic risk factors; Need more research on maternal and prenatal factors
Xander McDonald, individual w/ autism, parent, sibling, advocate I think this area gets vastly overfunded at the expense of other areas in autism, however... Considering the high numbers of autistics with GI issues, studying our gut biomes is a good research priority. I think some gene-environment interactions should be studied, such as the role of older pesticides such as DDT and Agent Orange on descendants of those with large exposures to it. Themes Addressed: Need more research on the interaction of genetic and environmental factors; Need more research on the role of the microbiome and gastrointestinal risk factors; The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
Zoe Goodblanket, Grandparent Definitely genetic and environmental factors. Considering the degradation and pollution of environment I think there are many factors that could potentially influence the development of ASD behaviors. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anne Sawyer, Parent All listed in the examples Priorities: 1) The underlying cause. 4) Environmental and Pharmaceutical risks Need more research to better understanding environmental risk factors, including both chemical and social environments; Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome)
ParentI think that the vaccinations scare is a big hoax that is stoked by zealots, besides being a huge societal danger if it leads to skipped vaccinations. I also think gut issues are a waste of time and money. Everything ive read suggests multiple genetic causes which may require more advanced science than we have to track down. Personally i would like research to be concentrated elsewhere. The idea of finding a smoking gun is very appealing to parents but more important is what to do if your child has autism. Need less/no additional research on the role of vaccines in autismThe cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
AnonymousOnce again, the topics of genetic factors, environmental factors, and epigenetics of ASD are so incredibly underfunded. There is evidence to suggest that ASD like characteristics do occur within related individuals. The genetic and epigenetic implications of this early research is not yet understood due to a lack of available funds for such topics to be pursued in research. Such research could illuminate many of the genetic factors involved with the development of ASD in at-risk individuals and could shed light on the genetic mechanics at play in the development of ASD. Without funding for such pivotal research, these mechanics may never be understood and may never be used in the diagnosis and treatment of those affected by ASD. Need more research on epigenetic risk factors; Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Alexandrea Van Der Tuin, Disability Advocate and Wellness Coach who's an Aspie too.ASD is genetic and Environmental. But, you know that already. Don't you? Sure some of us can learn to live sometimes somewhat normal lives. But, that doesn't mean we are no longer on the spectrum. Or cured. You need to accept that proper behavior. And seaming normal or cured in your mind isn't the same thing as no longer needing support. We still are unique. And need ideally to be served as such. Which MUST include a shown RESPECT for how we could possibly contribute to the world. The best WE Can. Society needs to uniformly see us as individuals. And judge us only based off our own best. Not held to NT expectations. Sure. Some of us may meet or greatly exceed those expectations eventually- sometimes. But, that shouldn't always be your goals for us. I support therapies done buy properly trained Professionals who have the right mindsets. Although CBT can be fabulous for many of us who speak/communicate well. Counsler's and teachers in America mostly have little to no training in how folks with disabilities think differently. That's a MAJOR problem. that needs addressing provided enough psychologists or doctors of counsler's have enough interest in serving our populations. Feel free to contact me if you need to.Thanks for listening. Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
AnonymousMaternal depression Immune disease C-section, microbiome Need more research on immune and metabolic risk factors; Need more research on maternal and prenatal factors; Need more research on the role of the microbiome and gastrointestinal risk factors
AnonymousEpigenetics and microbiome. Improving microbiome through appropriate prenatal/birth practices, minimizing use of antibiotics, probiotic treatments, etc. Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Cindy ClearmanUnderstanding of genetic and environmental risk factors, as well as gene-environmental factors is vital. Need more research on genetic risk factors; Need more research on the interaction of genetic and environmental factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
ClaireGenetic factors, in-utero factors, and so on. There's no one "right' answer, and to act like Autism needs to be prevented is ridiculous. Autistic people have been around since forever, and there's nothing wrong with that. We don't need to be extinguished, we need support and societies that accept us for who we are. What needs to be prevented is the idea that it is damnable to not be "normal," and not-normal people are deserving of pity. Need more research on genetic risk factors; The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
Crystal ReuterGenetic and environmental risk factors and then gene environment interactions. Need more research on epigenetic risk factors; Need more research on genetic risk factors; Need more research on the interaction of genetic and environmental factors
Crystal ShadeEnvironmental risk factors. I believe more research is needed during pregnancy. There has been so much progress on a lot of other disorders that can be detected/prevented during pregnancy. Need more research on maternal and prenatal factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
david may, KidstokidsII A NJ Non Profit Corporationwhy I could write a book on the policy issues on kids specifically aging out of any service. We are only in the early states of the epigenetics impact And the environmental work seen in microbiome. Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Donna GruberThis may be useful to the parents who have had a child with autism and now wondering if they can have another child without the disability. Personally given a pool of limited funds, I would put most of the funds into housing and supports for adults with autism rather than do more research into a disorder that we cannot cure or prevent given our current state of medicine. Need more research to better understand heritability and risk of autism in families; The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
AnonymousEnvironment plays a big part in the causes of autism - think about 60 years ago we didn't have the pesticides and insecticides we have now and people were healthier and autism was as prevalent - - there has to be some sort of connection to all of the chemicals that we have developed over the years and how the body responds to them for different people. Big companies should not be able to pay for the cover up of important information. 100% of children can not handle the vaccinations regimen that is set forth in the US - look at it and compare it to other countries, it isn't right to bombard our children with all of this foreign material in a short period of time. Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to understand the role of vaccines in causing autism
AnonymousI truly believe there is an autoimmune component and genetics. Studies have shown with women who have autoimmunity have a significant increase of chance of having a son with autism. Autoimmunity itself is on a rise, thus ASD is also on rise. I think with nether diagnosticians the numbers have also increased, because 40 years ago children would just be labeled as "slow or delayed". Now we find sensory processing deficits, behavioral deficits, etc Really funding for therapies at an early age, education structure needs to be looked at again, and research to continue on finding cause and ways to decrease the numbers. Like why is the US who approves hundreds of chemicals in our foods, or air, and water have a huge increase in ASD and other countries statistics have remained the same? Need more research on immune and metabolic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Brooke PotthastCausation of regressive autism based on environmental insults including immunizations. ... Microbiome research is needed. ... Why has the IACC wasted 10 years and a billion dollars doing gene research? There are significant environmental components implicated and we must address them for the sake of future generations. Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to understand the role of vaccines in causing autism
Kay Ashbrook, Myersbrook Supported Living Agency Corp.genetic and environmental risk factors, gene-environment interactions, & epigenetic and the micro biome Need more research on epigenetic risk factors; Need more research on genetic risk factors; Need more research on the interaction of genetic and environmental factors; Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Kira Parris-Moore , Parent of an autistic childI want more research on what environmental and/or genetic factors that cause autism. I also want more research on vaccinations, since there is suspicion that this may attribute to children developing autism. Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to understand the role of vaccines in causing autism
AnonymousI believe the environment is definitely a factor in the autism epidemic. I hope the risk factors can be identified soon before the incidence of autism increases to 1 in 2. Secondly, the genes of the parents of children with autism should be studied. Research should be conducted to see if there are similarities in the genes of other parents of of children with autism. Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Laura Cichoracki, parent of a teenager with autismWhile I think that research is necessary to answer these questions, genetics testing has led to more questions and concerns to answers. I would reserve using genetics as a diagnostic tool until science can more accurately define exactly what those deletions and substitutions really mean. My son had a wonky gene discovered on testing, but nobody could tell us what that meant. In persons missing this gene, it meant loss of cognitive function and premature death! For a year we were gripped with fear about what to do and how to proceed. Our doctor had to partner with an out-of-state university and collect data, and they finally agreed to test me and my husband for free (since insurance would not cover our testing at all). Fortunately, I carry the same mutation, so this is likely a benign condition. But science can't really tell us and for the better part of a year we were consumed with fear about whether or not we should give up on making him a functioning member of society and focus on giving him a happy, memorable life before planning a premature funeral. I cannot ever express to you how painful that was. Finding the cause of autism is important in case it is preventable. However, this research must not eclipse services to those already diagnosed. Need more research on genetic risk factors; The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
MaryAnn Pranke, Parent of Child with Autismenvironmental factors and the potenial role of epigenetics and the microbiome: with the continued increase in diagnosis of autism, more research is needed to explain this continued increase. Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Mary SchmidtGenetic and environmental risk factors Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Mary Pulles Cavanaugh, Thinking Moms RevolutionThe genetic make up is key to understanding whether the child will be able to withstand the vaccines. It is also important for the Mother to detox her body prior to becoming pregnant. During pregnancy she needs to keep her body and her babies body pure of any foreign substances that the body would not recognize and subsequently not be able to process. When this happens this compromises the natural energy flow of the body. It is most important to keep the blood pure so oxygen is allowed to flow freely. No drug or vaccine should be introduced into the body without a genetic work up first. Once developmental delays are present the vaccine schedule needs to be put on hold for that child. We need to go back and look at the schedule when 1 out of 10,000 children received the diagnoses of autism and compare it to what what the schedule is now. Clearly something has gone very wrong. Need more research on genetic risk factors; Need more research on maternal and prenatal factors; Need more research to understand the role of vaccines in causing autism
Megan GalvinGenetic and environmental risk factors Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Melanie Pucino Genetics and environmental risk factors. My adopted child was failure to thrive and malnourished. We need to know if neglected children have a higher risk Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Priscilla ArenaAs a parent born in1971, there is simply no denying the environmental factors involved with the increase in statistics. Whether it's the hormones in our food that the FDA has approved to be safe or the immunizations that supposedly has no link to Autism, more investigation needs to be done. When I speak to my parents of my group, (SASI, Suffolk Asperger/Autism Support and Information) I often say, " that I followed all the rules. I didn't eat soft cheeses, or tunafish out of the can etc. But the end result is still my child has Autism". Many of my parents nod in agreement as they too followed the rules of pregnancy. I truly believe their is something in the food we ingest. In today's society, we have to pay twice as much to get the fresher/ purer versions of the food I grew up on as a kid. I find it simply wrong. Need more research on maternal and prenatal factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
AnonymousGenetic and environmental research is very important and should be expanded. gene environment interactions is also important as well as a research priority Need more research on genetic risk factors; Need more research on the interaction of genetic and environmental factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
AnonymousMore genetic research, federal laws to mandate coverage for all therapies (especially ABA), removal of bureaucratic roadblocks to adequate care/coverage for therapies, medical care, & DMEs. Study if possible pesticide & medicinal correlations exist. Provide substantial advocacy assistance (medical, insurance, financial, Social Security red tape/roadblocks) to families caring for ASD afflicted & the patient as well. Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Alexa Appel, Autistic personI don't want to not-exist. I don't want my kin to not exist. I want a greater understanding of this as a neurotype that has existed for centuries and will continue to exist. 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. Need less/no additional research on the role of vaccines in autismThe cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
Shayna Franks I think some instances can be prevented. I know that children left alone with no stimulation can start to rock and create their own stimulation. If not caught early, symptoms can't be reversed and thus has autism from environment. In my personal experience, I took prenatals, was not sick during pregnancy, have a clean, loving and stimulating environment and both my kids are ASD, leading me to believe it's in my genes. Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
AnonymousResearch priorities should be in the area of how & why autism occurs.. If we don't know why this happens environmentally or genetically or otherwise it cannot be prevented or eradicated! Need more research on genetic risk factors; Need more research to better understanding environmental risk factors, including both chemical and social environments
Linda LaPointe, JERICHO Bureau for Exceptional Children and AdultsMy family is a case (Uncle, Brother, Nephew and various members have quirky characteristics that we call showing your "A") where you would think I would lean towards genetic research but I do not. I would like the research priority to be on the role of epigenetics and the microbiome. Taking the information that is being gathered in the study of Lupus and seeing if it can be used in the study of moderate to severe ASD. In the last special edition of Lupus focused on environmental factors the editorial suggested that a ''?complex blend of genes and environmental factors is required to cross the disease threshold?''.13 The blend still appears to be complex, but some of the underlying biology is becoming clearer. Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Jane O'GradyI have no clue, I had a normal pregnancy and I was even still jogging and swimming regularly into my third trimester. I was a 20 year old healthy eater, didn't smoke, didn't drink, didn't do drugs and my oldest has ASD. My son with autism was born on a military base that has a contaminated water lawsuit (Camp LeJeune NC).My other son is typical (different father). Both my children are vaccinated as they do not cause ASDs. My ex has another child who has ASD, he and his wife are in denial as they believe their 3 year old will grow out of autism (Jenny McCarthy doesn't help either).Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments;;Need more research to better understand heritability and risk of autism in families; Need more research on maternal and prenatal factors; Need less/no additional research on the role of vaccines in autism
Christina Hildebrand, A Voice For ChoiceAll of your focus is on genes and epigenetics. Research of the full CDC vaccine schedule of 72 doses has never been done and has never been looked at with respect to autism. The jury is said to be in, but a CDC researcher has shown that data was removed from the MMR autism study and it actually shows that the MMR does cause autism. There needs to be more research done for all vaccines and a combination of all vaccines with respect to autism. There are 100,000s of families who believe 100% that vaccines contributed to their children's autism. How can you just ignore that. The science has not been settled. Science is never settled. Please do this research.Themes Addressed: Need more research on epigenetic risk factors; Need more research on genetic risk factors; Need more research to understand the role of vaccines in causing autism;
Anonymousgenetics as well as the rise in gmo's and pesticide use as a causeThemes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Lucy Gratz, Job Coach/Developer AssistanceI thinlk its very important to know if medicine like a muscle relaxant while unaware that one is pregnant can cause Autism or having a numbing and chemical substance used while having a root canal during a pregnancy can cause Autism. Hair dye also. I experienced these during a first half of pregnancy and wonder if...These types of environmental things. I also wondered about the injection vaccinations too. Overall I think maybe less environmental and more gene related in families with where there is clearly a history of extreme lack of social abilities and prefernece for no changes and anxieties. I see this in many families of those I have met. Even mine. Genetic info is crucial. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments;;Need more research to better understand heritability and risk of autism in families;;Need more research on genetic risk factors;;Need more research on maternal and prenatal factors; Need more research to understand the role of vaccines in causing autism;
AnonymousGenetic and environmental risk factors. There has to be a link to some environment as well. Chemicals applied to fruit and vegetables, preservatives, etc. need to be closely examined as potential risk factors for pregnant women.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors;;Need more research on maternal and prenatal factors
Melissa Poole, Community Services of Stark CountyThis is good to know but how many years do we need to throw money at it instead of helping the families who are dealing with it. I have often wondered, given my son's fraternal family history, if this was preordained before he was conceived. If I had known, would i have tried to have a girl, or maybe not had children? It's a possibility. I have also wondered if, given all of our technology and how we can go weeks without human contact if we choose, is this maybe an evolutionary step? It's something to think about. Themes Addressed: Need more research to better understand heritability and risk of autism in families; The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
Kristen and Brian FestaPlease focus on environmental causes and stop throwing away money on genetic research. Gene-environment interactions are important as are epigenetics and the microbiome. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments;Need more research on epigenetic risk factors; Need more research on the interaction of genetic and environmental factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Adrienne, MotherRole of epigenetics and the microbiome. Second, environmental risk factors.Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Rachel Ealy, High School Teacher research should continue to find the gene that causes autism and find out the environmental factors that "turn on" those genes. Pregnancy and autism should be studied more.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments;;Need more research to better understand heritability and risk of autism in families;;Need more research on genetic risk factors
AliciaFocus should be on extended families with multiple individuals with autism. There is a genetic component to this. 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.Themes Addressed: Need more research to better understand heritability and risk of autism in families; Need more research on genetic risk factors
Karen CummingsThe researchers in genetic and environmental are most important.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Lissa Probus, ASBGI believe strong results will come from the microbiome and environmental risk factors research resulting in options for prevention and recoveryThemes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the role of the microbiome and gastrointestinal risk factors
J. H., parentAll are equally important, but environmental concerns have more immediacy and are more pervasively important to everyone, not just those on the spectrum.Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome); Need more research to better understanding environmental risk factors, including both chemical and social environments
Lucy BeadnellUnderstanding the environmental and genetic triggers for ASD, how they combine, and how to minimize them. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
AnonymousVaccines are an environmental risk factor that is NOT being looked at. It is commonly being overlooked and it has an important role in the body's immune response. Immune response in some way (mostly negative) is a common thread to most cases of individuals with a behavior autism diagnosis. Do the studies. Test early in infancy for risk factors to vaccine reactions. Re-evaluate current vaccine schedule as it being to aggressive for an young child's immune system.Themes Addressed: Need more research on immune and metabolic risk factors; Need more research to understand the role of vaccines in causing autism;
AnonymousGenetic and environmental ,vaccinesThemes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors; Need more research to understand the role of vaccines in causing autism
Faith, PLAN parents Boston Autism ProgramGenetic and Environmental risks must be further analyzed. We know there is a genetic component but we do not know with certainty what the environmental factors may be.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anonymousgenetic and environmental risk factorsThemes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Susan Sheldon, ParentGene-environment interactions, more and better study on environmental impacts.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors
Sue McCullough, parentenvironmental, genetic and epigenetic risk factorsThemes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on genetic risk factors
KristieEnvironment. And genetics Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Colette McCaddenepigenetics and genetic predisposition and appropriate screening + environmental triggers Themes Addressed: Need more research on epigenetic risk factors;;;Need more research on genetic risk factors
AnonymousThis is the most important topic right here... What has caused the expulsion of autism??? Let's ask the Government to subpoena the CDC scientist Dr William Thompson and expose their debliating fraud. Let's stop the outrageous and never safety tested vaccine schedule. Let's educate the Healthcare professionals about this autism epidemic and let's not be afraid to question vaccines!! Let's not be afraid of big Pharma. Mainstream pediatricians do not have any knowledge on or any desire to lol earn about autism. They are too overwhelmed and big pharma and the AAP has done ignored all environmental and medical causes of autism. Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome); Need more research to understand the role of vaccines in causing autism
MaryAnna DunnI do not know what epigentics and microbiome are. What is your target audience for these questions? I am a parent. I am interested in environmental risk factors.Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
AnonymousGenetic and environmental risk factors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Susan bernardI know that there are some genetic factor it would be nice to know if the environment does effect itThemes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Michael Buzzard, Parent of children with Autism Spectrum DisordersGenetic and environment factors is the question......which is the cause. Expansive research needs to be done to determine causes. Why is that these disorders are exploding in the population of our children.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Ellen Riehm, ParentGenetic and environmental risk factorsThemes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Rosanna Armendariz, Autism Community Network of El PasoFrom what I've read in journals, most research points to a complex interaction of environment and genetics. I think research needs to more accurately and specifically identify both environmental and genetic risk factors for autism and come up with ways to prevent it from happening in the first place.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors; Need more research on genetic risk factors
Lisa Downeyepigenetics and the microbiome - ways to alleviate symptoms (not "cure" them)Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Alexander Frazier, Director, Autistic RealityAutistic Reality must emphasize that autism can happen in anyone, and is biological. It is not caused by vaccinations or the fault of any individual or group. Any evidence that vaccinations, pollution, or any other artificial factors cause autism has been proven to be falsified. Autistic Reality believes that there is genetic predilection for autism, and that although environmental factors do not cause autism, they may impact the manifestation or severity of the condition. By environmental factors in the previous sentence, we do not mean pollution or vaccinations or the like, but rather we mean the environment in which the autistic individual exists: the living environment, their schooling environment, their working environment, etc. Autism cannot be prevented, nor should it, since it is a natural form of diversity just like being African-American or gay. To prevent autism is eugenics and genetic warfare, and altering the genetic code to eliminate undesirable traits is illegal.Themes Addressed: Need more research on genetic risk factors; The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
Tammy G Harrison, Parent of ASDepigenetics and microbiome: To be able to identify the root, we can either work to avoid or know what to expectThemes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the role of the microbiome and gastrointestinal risk factors
Mariluz SosaPotential role of epigenetics and the microbiomeThemes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Parvathi Gontinagenetic, environmental risk and microbiomeThemes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Michael HannonThe most important research priorities related to risk factors include gene-environment interactions and genetic and environmental risk factors. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors; Need more research on genetic risk factors
Laura CelliniEnvironmental toxicants and biological vulnerabilities. We must have an unbiased, non-governmental study looking at present vaccine schedule and biological mechanisms for those with autism and a history of regression after vaccination. 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. 1. We need to identify all factors (environmental and genetic) contributing to the epidemic of autism and take all measures to stop the epidemic. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to understand the role of vaccines in causing autism;
Elena Kelley, MotherI am no scientist. But it seems as if a lot of brilliant people carry genes that would contribute to autism. I would hate to loose the brilliance that these people bring by genetically altering children or aborting fetuses due to them carrying a certain gene or sequence. I would prefer to clean up the environment and give early and correct lifelong support to people who are prone to autism. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
Lori McIlwain, National Autism AssociationOverall, a comprehensive federal autism plan is needed with a robust research roadmap that covers both genetic and environmental influences. Themes Addressed: Need more research on epigenetic risk factors;;;Need more research on genetic risk factors
AnonymousGene-environment interactions , epigenetics, and environmental favors Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on the interaction of genetic and environmental factors
Beth Malow, Vanderbilt University Medical Centerboth genetic and environmental risk factors are critical to studyThemes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
AnonymousGenetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome are all very important goals. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the interaction of genetic and environmental factors; Need more research on genetic risk factors
John Rodakis, N of One: Autism Research FoundationRecent studies that have attempted to examine the relative contribution of genetic vs non-genetic factors (environmental) have shown estimated the contribution of non-genetic factors in the 50+% range. (Hallmayer 2011). Clearly both are important however, an analysis of NIH funding appears to favor biomedical research that is either primarily genetic in nature, e.g., gene association studies or has built in assumptions primary role of genetics e.g. fMRI neuroanatomy studies. Notably missing is research that begins with the view that non-genetic factors are primarily causative. I would like to see a concerted effort to identify and fund biomedical research that is specifically non-genetic in its primary assumptions. Research into the microbiome research, cell metabolism and mitochondrial function, immune function are examples of such research. Specifically I would like to see the IACC & NIH TRACK & REPORT on the relative funding to both the genetic and non-genetic camps. With the goal of being able to demonstrate a diversified and balanced portfolio approach.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Ann Bauer Sc.D., University of Massachusetts LowellAs is pointed out in your discussion, significantly more research is needed into many environmental factors. The major omission in your list of potential areas is investigation into the most used medication during pregnancy and by infants. Acetaminophen (paracetamol) has now been found in 5/5 prospective cohort investigations of prenatal exposure to increase risk of adverse neurodevelopment, to now include autism and ADHD. Animal models are also suggestive. No high quality research has been conducted investigating infant exposure despite the fact that 23% of infants are given acetaminophen in any given week. Additionally, pain management guidelines suggest that male infants be given 5-7 doses with the circumcision procedure. This exposure occurs near birth, during a particularly vulnerable period of development. It is at the peak in brain growth spurt and when the metabolic pathway, glucuronidation, is underdeveloped potentially causing acetaminophen to become metabolized via more toxic pathways (NAPQI, endocannibinoid, NOS etc.). Acetaminophen has a narrow therapeutic index and is the leading cause of acute liver failure. Medications used during pregnancy-valproic acid, thalidomide, SSRI's, Misoprostol and other labor induction medications have all been suggested to increase ASD risk. Why have we assumed acetaminophen is innocuous? Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on maternal and prenatal factors
Anonymous, The Childhood League CenterUnderstanding genetic and environmental risk factors that may trigger the development of ASD is necessary so that the public can be educated. Knowing the genetic and environmental interactions and how our environment impacts our genetic makeup is imperative to developing public policy regarding our environment.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Catherine Camp Boyle, Autism Housing PathwaysAgain, the underlying genetics of autism may not have changed over time. However, there may be factors in the environment that are causing some individuals to present with a more severe phenotype. Identifying these factors will lead to better outcomes and a higher quality of life.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Angela Lello, Autism SpeaksThe roles of epigenetics and the microbiome in autism are promising areas of research and should be explored. However, genetics alone cannot explain all cases of autism. Very little is known about environmental causes but study of this in terms of gene-environment interactions holds promise and should receive greater investment. Genetically-defined animal models of some forms of autism are available, providing a necessary tool to investigate environmental interactions with those genes. There are known list of genes and pathways that, when disrupted, cause autism. Thus, high throughput screens to assess potential environmental impacts are possible. There are many options short of epidemiological study that can further understanding of environmental contributors to autism risk that should receive consideration for investment. More research is also needed to better understand how 'environment' can impact the 'risk' of poor long-term outcomes (to maximize the likelihood of positive outcomes). Demonstrated approaches to achieving this include early detection and early intervention as well as sufficient access to evidence-based services and supports across the lifespan and the strategic plan should emphasize this. Increased attention should be made to the development of effective risk communication strategies for use by various sectors of the stakeholder community, to leverage the emerging body of knowledge to enhance care and outcomes now and in the future.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
AnonymousWhereas there may be some truly 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 with an epigenetic predisposition. 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 more research on epigenetic risk factors; Need more research on immune and metabolic risk factors; Need more research on maternal and prenatal factors
Annie Acosta, The ArcInformation Dissemination: The increasing knowledge of the genetic and environmental risk factors for ASD must be communicated for practical application. For instance, the risk factors of advanced paternal age and prenatal exposure to air pollution should be made widely known to the stakeholder community and general public in order to take preventive measures. In addition, prime examples of neurodevelopmentally toxic chemicals (those identified in the July 2016 consensus statement of the Project TENDR ' Targeting Environmental Neurodevelopmental Risks - organophosphate pesticides, PBDE flame retardants, combustion-related air pollutants, lead, mercury, and PCBs) should be prioritized for individual behavioral and policy level changes.Themes Addressed: ;Need more research to better understanding environmental risk factors, including both chemical and social environments;;;;Need more research on genetic risk factors;;;;;;;;
Patrick Johnson, American Academy of PediatricsOver the past several years, the Strategic Plan has focused on how environmental ASD risks may differ in vulnerable populations, as well as on groundbreaking research in the microbiome, animal models of ASD, and bioinformatics. The AAP is pleased that the Plan emphasizes the revolution that genetics research has brought to understanding the causes of ASD, and pediatricians commend the time the Plan spends differentiating environmental from epigenetic factors. The AAP recommends that the IACC work to disperse important information about the genetic/environmental causes of ASD to pediatricians, as such research may help physicians take a more preventative approach. In general, any knowledge about public health or genetic risks that may lead to ASD should be made widely available to both clinicians and families ' especially families with a first-degree relative with ASD. 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. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors; Need more research on genetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Stephen HoltsberyEpigenetics and microbiome are high priority issues. Genetic and environmental interactions come next. Themes Addressed: Need more research on epigenetic risk factors; Need more research on the role of the microbiome and gastrointestinal risk factors
Sherri L KellyLooking at environmental factors and epigenetics are very important. Also, research seems to point to the gut greatly affecting brain and behavior. This really needs more study.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on epigenetic risk factors
Beth ClayEach of these issues is important; however, genetics funding has far exceeded prior recommendations, so greater emphasis on funding well designed studies on all environmental risk factors including vaccines and other medicines. Important to move forward from simple identification of risk factors into treatment options including complementary and alternative therapies, dietary supplements, and detoxification processes including sauna and exercise. Most important topics in research are environmental factors, including exposure to medicines and other chemicals in utero, and in the first six months of life; research on immunologic and metabolic factors with emphasis on treatment approaches including dietary and alternative therapies; and finally co-occuring conditions and treatment approaches. Policy issues that need to be addressed is the urgent need for improved access to services across the life span, and insurance (government funded and private) for more than simply ABA; for all treatments. Discussion on viability of HSA type insurance offered through Medicaid to cover the comprehensive care needs of individuals on the spectrum, with parents able to make determinations on care.Themes Addressed: Current priorities are appropriate (genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome); Need more research to understand the role of vaccines in causing autism
AnonymousDatabases from insurance companies/government for families willing to share genetic info and environmental risk factors.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Jeff laubach All so important - epigenetics and the mirobiome and immune response Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the role of the microbiome and gastrointestinal risk factors
Azuree NaticeWe've already identified more than 1,000 genes linked with ASD but that has not helped a single autistic person to live a better life. Microbiome research might, by possibly developing an understanding of how microbiota influence social-emotional responses and anxiety/depression. I would much rather fund supports that help autistic people and their families live better lives than keep chasing genetic tests trying to "cure" it.Themes Addressed: Need more research on the role of the microbiome and gastrointestinal risk factors; The cause and prevention of autism are not a priority, either because resources can be better used in other areas or because preventing autism should not be a goal
Idil AbdullOh boy, as a Somali woman with an autistic child - there is definitively a genetic and environmental factors associated - the question is which gene (s) and what environmental triggers are the problem. 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?Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Anna Frances, autistic 17 year oldGenetic vulnerability triggered by environmental stress, such as infections (bacteria, viruses, parasites, fungi); psychological and physiological stress (trauma); sensitivities to the natural environment (dust, pollen, animals, mold etc.); chemicals (specified in testing); heavy metals (specified in testing); food (specified in testing); vaccines. These are all insults to the body, and when your immune system is already compromised from untreated genetic mutations, they can trigger a host of symptoms that we call autism. Prevention includes early genetic testing and compliance with the resultant recommendations for diet and supplements, and avoidance of chemicals and heavy metals. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors; Need more research to understand the role of vaccines in causing autism
Marcia GrayI have read recent reports siting a discovered channel linking the immune system to the brain which would actually seem to explain why some seem to find a correlation between vaccination and ASD. I most certainly believe that ASD is genetic, but could see how some might be susceptible to an exacerbation of their symptoms when Immunized if this newest research proves to be true.Themes Addressed: Need more research on genetic risk factors;Need more research on immune and metabolic risk factors
Carolyn Gammicchia, Parent of 26 year old son diagnosed with autism after sustaining a vaccine injury from six vaccines given in one sitting. I feel we continue to waste funds on identification when we have a significate number of ways to identify autism. Additionally there have been numerous projects and programs developed in the last decade to do so. What we need to start looking at in research is needed studies that keep being ignored. When we look at bio markers we need to look at a parent's genetic predisposition to autoimmune disorders and what has been handed down to a child to look at how things like vaccines can cause injury to specific subsets of individuals due to the toxins within their contents. We need to look at epigenetics to determine if parents are passing on to their children genetic characteristics to make them more susceptible to the negative effects of environmental factors so these types of injuries can be prevented from variables such as vaccines and other environmental toxins. Themes Addressed: Need more research to better understand heritability and risk of autism in families; Need more research on genetic risk factors;Need more research on immune and metabolic risk factors
Angelique Higgins, parentInitiate prospective studies of autism in families with a history of autoimmune disorders, including screening for MTHFR and other immune-related genetic markers as well as class II alleles that are immune related. In particular, do prospective studies of autism risk in these patients with regard to vaccination. Current CDC schedule vaccines were approved with no studies in populations with a family history of autoimmune disease, who were specifically excluded from clinical trials.Themes Addressed: Need more research to better understand heritability and risk of autism in families; Need more research on immune and metabolic risk factors
Wendy Fournier, National Autism AssociationResearch is needed on individuals with regressive autism to determine genetic susceptibility and environmental risk factors. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors
Cathy Cockey, noneI would like to see research done on the MTHFR genetic mutations to see if at-risk babies can be identified before vaccines are given. How does the MTHFR mutation impact their ability to process the toxins that are injected via vaccines?Themes Addressed: Need more research on genetic risk factors; Need more research to understand the role of vaccines in causing autism
Marie ArnoldThere has been no double blind study with regards to vaccinations, ever. I would like to see the overwhelming data and evidence, already available, used and applied to the developmental biology, as well as cognitive and behavioral biology, AND genetic markers such as MTHFR.Themes Addressed: Need more research on genetic risk factors; Need more research to understand the role of vaccines in causing autism;
Heidi Scheer, Autism Hope AllianceVACCINE link to autism. IT IS HAPPENING TO THOUSANDS and has been proven in vaccine court and in the stories of thousands of families in the United States! You cannot ignore the destruction of our children any longer! And no, I do not believe vaccines are the only cause. There are environmental factors, toxic chemicals, and GMO foods that are contributing greatly as well. Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research to understand the role of vaccines in causing autism;
Maureen Durkin, University of Wisconsin-MadisonUnderstanding the full range of effects of social, chemical and other environmental exposures on the developing nervous system.Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on the risk factors for co-occurring conditions in autism
AnonymousThis is another important topic for individuals that have comorbid digestive issues. Themes Addressed: Need more research on the role of the microbiome and gastrointestinal risk factors; Need more research on the risk factors for co-occurring conditions in autism
Anonymous, Pittsburgh Center for Autistic Community1) The influence of the gut (including intestinal flora and nutrition-related topics) on the cognitive and emotional well-being of autistic persons remains unclear. Although most research points away from a direct causal nature, improving dietary/flora-related factors may help ameliorate anxiety, fatigue, and/or other secondary symptoms in autistic persons. 2) Co-occurring physical disorders which may be more prevalent in autistic individuals, including Ehler's Danlos Syndrome and seizure disorders. Themes Addressed: Need more research on immune and metabolic risk factors; Need more research on the risk factors for co-occurring conditions in autism
Stephen D. Kette, Autism Policy Reform Coalition 1. Refocus emphasis on environmental triggers, factors, and susceptibility rather than genetic causation hypotheses. 2. Refocus efforts from prenatal development hypotheses to regressive autism in childhood. 3. Refocus efforts from emphasis on autism as a psychiatric disorder to a spectrum of physiological disorders, including appropriate emphasis on the frequently occurring additional medical morbidities in many cases of ASD. APRC does not suggest a lack of importance for genetic research as opposed to research, for example, on exposures to chemical and biological agents. Such exposures, after all, could be responsible for genetic mutations leading to ASD. APRC does not downplay the importance of understanding the potential for prenatal development in cases of congenital ASD. Continued in question #4. Question #3 response (continued) Priorities on investigating specific causal candidates should be remediation-driven. We recognize that it is nearly impossible to prove causation in absolute terms. Thus, the risks of remediation should carry almost equal weight as the probability that a proposed agent or mixture is causal. A priority should be placed on identifying susceptibilities that are more easily controlled than unavoidable environmental exposures. Furthermore, we urge that the Autism Research Strategic Plan include investigating groups of chemicals, plus understanding the potential for complex mixtures of chemical and biological agents to trigger regressive autism. An increasing body of literature documents, for example, that chemicals lacking any evidence of mutagenicity exhibit mutagenicity when mixed with other non-mutagenic chemicals. The significance is self-evident given that all children are exposed to increasingly complex mixtures of environmental contaminants. Although a broad and longstanding support within the scientific community exists regarding the need to conduct research in this area, little, if any, progress has been made. Continued in question #6 Themes Addressed: Need more research to better understanding environmental risk factors, including both chemical and social environments; Need more research on genetic risk factors; Need more research on the risk factors for co-occurring conditions in autism
Ginger Taylor, Autism mom, Canary PartyScience has found that vaccines and their ingredients can cause the underlying medical conditions we find in children with ASD. These conditions include gastrointestinal damage, immune system impairment, chronic infections, mitochondrial disorders, autoimmune conditions, neurological regression, glial cell activation, brain inflammation, seizures, synaptic dysfunction, dendritic cell dysfunction, mercury poisoning, aluminum toxicity, gene activation and alteration, glutathione depletion, impaired methylation, oxidative stress, impaired thioredoxin regulation, mineral deficiencies, impairment of the opioid system (pain management system), endocrine dysfunction, cellular apoptosis, and other disorders. I have compiled a lengthy list of the research here: https://www.scribd.com/doc/220807175/126-Research-Papers-Supporting-the-Vaccine-Autism-Link This research is peer reviewed, mainstream, uncontested in the medical literature, and has slowly built into a body of research that has become too big to ignore any longer. Conscientious physicians have been developing treatments for ASD individuals with these conditions for decades, and medical protocols to address these underlying syndromes have lead to the improvement, and even the full recovery, of un told thousands of children's autistic symptoms and conditions. It is time to end the lie that 'there are no links between vaccines and autism,' and explore the treatments for these so called 'comorbid conditions.' Themes Addressed: Need better methods for testing contributions of risk factors from multiple domains to better understand risk of autism; Need more research to understand the role of vaccines in causing autism
Eileen HenotAlso, please study Molecular mechanistic functions of vaccine-induced autoimmune disorder. Increased risk of autism from the birth dose of Hepatitis B. Thanks! Themes Addressed: Need more research on immune and metabolic risk factors; Need more research on maternal and prenatal factors; Need more research to understand the role of vaccines in causing autism

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