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
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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.
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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.
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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.
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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
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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.
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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.
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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.
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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.
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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
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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
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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
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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
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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).
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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
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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
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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.
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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
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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
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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) |
Parent | I 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 |
Anonymous | Once 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 |
Anonymous | Maternal 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 |
Anonymous | Epigenetics 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 Clearman | Understanding 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 |
Claire | Genetic 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 Reuter | Genetic 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 Shade | Environmental 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 Corporation | why 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 Gruber | This 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 |
Anonymous | Environment 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 |
Anonymous | I 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 Potthast | Causation 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 child | I 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 |
Anonymous | I 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 autism | While 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 Autism | environmental 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 Schmidt | Genetic 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 Revolution | The 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 Galvin | Genetic 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 Arena | As 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 |
Anonymous | Genetic 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 |
Anonymous | More 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 person | I 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 |
Anonymous | Research 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 Adults | My 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'Grady | I 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 Choice | All 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; |
Anonymous | genetics 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 Assistance | I 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; |
Anonymous | Genetic 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 County | This 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 Festa | Please 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, Mother | Role 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 |
Alicia | Focus 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 Cummings | The 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, ASBG | I 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., parent | All 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 Beadnell | Understanding 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 |
Anonymous | Vaccines 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; |
Anonymous | Genetic 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 Program | Genetic 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 |
Anonymous | genetic 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, Parent | Gene-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, parent | environmental, 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 |
Kristie | Environment. 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 McCadden | epigenetics and genetic predisposition and appropriate screening + environmental triggers Themes Addressed: Need more research on epigenetic risk factors;;;Need more research on genetic risk factors |
Anonymous | This 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 Dunn | I 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 |
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 |
Susan bernard | I 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 Disorders | Genetic 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, Parent | Genetic 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 Paso | From 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 Downey | epigenetics 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 Reality | Autistic 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 ASD | epigenetics 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 Sosa | Potential 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 Gontina | genetic, 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 Hannon | The 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 Cellini | Environmental 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, Mother | I 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 Association | Overall, 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 |
Anonymous | Gene-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 Center | both 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 |
Anonymous | Genetic 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 Foundation | Recent 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 Lowell | As 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 Center | Understanding 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 Pathways | Again, 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 Speaks | The 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 |
Anonymous | Whereas 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 Arc | Information 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 Pediatrics | Over 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 Holtsbery | Epigenetics 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 Kelly | Looking 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 Clay | Each 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 |
Anonymous | Databases 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 Natice | We'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 Abdull | Oh 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 old | Genetic 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 Gray | I 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, parent | Initiate 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 Association | Research 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, none | I 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 Arnold | There 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 Alliance | VACCINE 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-Madison | Understanding 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 |
Anonymous | This 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 Community | 1) The influence of the gut (including intestinal flora and nutrition-related topics) on the cognitive and emotional well-being of autistic persons remains unclear. 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 Party | Science 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 Henot | Also, 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 |