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Strategic Plan Question 3: What Caused This To Happen and Can This Be Prevented?

Respondent 0013

Eileen Nicole Simon
conradsimon.org This link exits the Interagency Autism Coordinating Committee Web site

a. Gaps and underrepresented research areas.
Autism is associated with many etiologies, including genetic metabolic disorders. What is needed is to look for a final common pathway in the brain affected by all predispositions for autism. Phenylketonuria (PKU) was a genetic cause of autism in the past. Note that discovery of the metabolic defect in PKU, and treatment by dietary restriction of phenylalanine, predate discovery of the structure of DNA. PKU is caused by a defective enzyme in the liver, not the brain. Abnormal metabolites (mainly phenylpyruvic acid) of this defective enzyme are clearly toxic to the brain. Within the brain, the auditory system has the highest rate of blood flow and aerobic metabolism and is most vulnerable to toxic abnormal metabolites like phenylpyruvic acid. Developmental language disorder is the core handicap of children with autism. The brain impairment underlying this handicap is the final common pathway of all etiologies of autism, and likely includes the auditory system.

b. New opportunities.
Folstein & Rutter (1977) reported concordance for autism in 4 of 11 pairs of monozygotic twins. Of 21 twin pairs, 17 pairs were discordant for autism and in 12 pairs autism was associated with an event likely to cause brain damage. Of the identical twins studied by Belmonte & Carper (2006), the more seriously affected twin was not breathing at birth, and at 9 months of age he failed a hearing test. Norman (1982) noted that perinatal hazards are increased for twins and that thus twins are not a good model for genetic versus environmental studies of things like intelligence. References: (1) Folstein S, Rutter M. Infantile autism: a genetic study of 21 twin pairs. J Child Psychol Psychiatry 1977 Sep;18(4):297-321. (2) Belmonte MK, Carper RA. Monozygotic twins with Asperger syndrome: differences in behavior reflect variations in brain structure and function. Brain Cogn. 2006 Jun;61(1):110-21. (3) Norman MG. Mechanisms of brain damage in twins. Can J Neurol Sci. 1982 Aug;9(3):339-44.

c. Research priorities.
Research with twins as described above provides strong evidence that genetics has less to do with causing autism than environmental causes of brain damage. What causes brain damage in the perinatal period, and what systems of the brain are more vulnerable to damage? Neurotransmitter hypotheses are currently too non-specific. Investigation of inhibitory versus excitatory neurotransmission in specific brain structures like the inferior colliculi may shed some light on how acoustic processing might be disrupted in children with autism.

Respondent 0018

b. New opportunities.
More and more research is accumulating suggesting the medical problems of children with autism. Oxidative stress. Immune dysfunction. Mitochondrial dysfunction. We need to be studying how these relate to other and we need to be studying the things that cause these problems as potential causes of autism. These are known to include heavy metals, pesticides, infections. Study those things....even if they occur in vaccines.

Respondent 0022

a. Gaps and underrepresented research areas.
Environmental interaction is poorly researched.

Respondent 0023

John Best
Hating Autism blog

a. Gaps and underrepresented research areas.
You liars know what caused this, thimerosal. Get ALL of it out of the vaccines right now. And, get rid of the squalene too.

Respondent 0024

a. Gaps and underrepresented research areas.
The concept of vaccine damage has not been fully proven. I believe that we need to look at unvaccinated children for any evidence of autism. Unvaccinated populations that show no sign of autism should give some leverage to cause. Also, we need more information on the sampling and studies of the CDC and NIH "proof" that vaccines are not involved in the epidemic of autism. These studies should be shown as unreliable or flawed.

Respondent 0029

a. Gaps and underrepresented research areas.
Is there an environmental cause? Do sonograms or reproductive technology increase rates of autism? Can the increase in autism prevalence be explained by the trend towards mothers and fathers having babies at older ages?

c. Research priorities.
Etiology and cure have gotten too much attention and is not balanced with research into how to improve the lives of individuals with autism--especially adults and their aging caregivers.

Respondent 0035

a. Gaps and underrepresented research areas.
I think a lot of research is already being done in this area but the focus should be on genetics and environmental triggers. Especially focusing on the genetics of the child that might make them vulnerable to environmental factors.

b. New opportunities.
I don't know.

c. Research priorities.
Focusing on tests that will determine vulnerability in children to environmental factors

Respondent 0038

a. Gaps and underrepresented research areas.
We simply need a vaccinated vs. unvaccinated study. Period. We also need a real study comparing children who received multiple injections of thimerosal vs. children who received NO thimerosal. The 2007 New England Journal of Medicine study was a joke because none of the children in the study received NO thimerosal. They ALL received thimerosal. The only difference was the amount they received.

b. New opportunities.
We need your committee to go through one by one and pick apart many of these flawed epidemiological studies which have supposedly exonerated thimerosal as being a culprit behind the rise in autism. The Verstratten study and the Denmark study in particular were extremely flawed and showed signs of frank manipulation. This needs to be exposed on a national level. Does your committee have the guts to expose the scandals behind these studies? Also the extreme conflicts of interest associated with these studies needs to be revealed on a national level. This will demonstrate to many involved just how deep this cover-up goes. And it IS a cover-up. There are many at the CDC who honestly deserve to be severely prosecuted for many crimes including perjury, obstruction of justice, and conspiracy to commit the before mentioned. You simply cannot understand the cause of autism until you expose the charlatans who have obfuscated and obstructed the search for the true cause.

c. Research priorities.
Again, does your committee have the courage to stand up to the likes of the CDC, AAP, Pharmaceutical industry, AMA, and the government itself? If you don't then you are wasting your time because these groups do not want a real cause to be found. They want it to remain a mystery. They want us to believe it is simply a freak of genetics. They want no blame assigned for any of this.

Respondent 0042

a. Gaps and underrepresented research areas.
Continued research into vaccines as a possible cause for autism, is a terrible waste of time and financial resources. Any discussion about prevention should ONLY be made with much input from adults with autism.

Respondent 0046

a. Gaps and underrepresented research areas.
More research into using induction with Pitocin, and the outcomes.

b. New opportunities.
Research into genetics.

c. Research priorities.
Research into genetics, and induction with Pitocin.

Respondent 0047

a. Gaps and underrepresented research areas.
There is still no INDEPENDENT, definitive evidence that immunizations are truly safe for our children, particularly the "newer" ones that have been added to the mandatory schedule over the past several years. This issue needs to be researched, funded by someone other than the drug companies and insurance companies.

b. New opportunities.
A complete separation of the research into ASD causation and treatment from the vaccine-producing pharmaceutical companies and insurance companies, who refuse to pay for any medical treatment related to autism because they consider it a "mental" disorder.

c. Research priorities.
Establish INDEPENDENT research. Be honest in informing the public of the risks of the accelerated immunization schedule. Allow parents the right to opt out of immunizations, especially if their children are already affected by ASDs.

Respondent 0049

a. Gaps and underrepresented research areas.
While it can be valuable to understand the origin of autism, too much emphasis is placed on "curing" or "preventing" autism, and more emphasis should be placed on thinking creatively and compassionately for our fellow human beings. Autism is not a tragedy. It is a learning opportunity.

c. Research priorities.
Check into GMOs Check into industrial pollutants Check into industrial agriculture Check into pharmaceutical pollution of ground water All of these factors have altered biodiversity and the human genome, and we have done little or nothing to address them.

Respondent 0052

a. Gaps and underrepresented research areas.
Autism has long been believed to be a genetic disorder, and some genetic markers have been found, but not all of the people diagnosed with Autism have these markers. I would like to see research continue on this to see if additional markers can be found or if other conditions such as unusual allergic reactions could be simply be imitating Autism.

b. New opportunities.
This topic has been the source of much dissension in the Autism community and I would like to see more collaboration between the 2 sides. I think the Bio-medical community may be onto something with their discovery of how many kids respond to diet change, but they seem to forget that this is a spectrum disorder so it may not hold true for everyone. I would like to see a collaboration to determine if more allergies than just food and mineral ingestion may be influential. I would also like to see more genetic research to continue to see if more markers can be found.

c. Research priorities.
I believe both areas that I mentioned are worthy of research and that simultaneous study should be done because ignoring either could be a huge mistake. Both have had measurable success already and that merit alone warrants more research, in my opinion, especially since both are obviously not complete yet.

Respondent 0054

a. Gaps and underrepresented research areas.
The reasons that these things happened are that political considerations overwhelm the decisions of the IACC and who gets appointed and who gets to review research. Also, the government does not do a good job in refusing to allow neurodiversity proponents to present their views before the IACC. They should not be allowed to present their anticure propaganda and the way to prevent this is to get a security guard to eject them forcibly from the premises if they enter the premises.

b. New opportunities.
same as above.

c. Research priorities.
same as above.

Respondent 0059

a. Gaps and underrepresented research areas.
Tom Insel needs to resign, his brother made 4 million dollars from the Hib vaccine. Tom Insel has special interest in hiding the truth that vaccines are causing the rise in autoimmune diseases including autism. Vaccines is the cause and we need to find out exactly what metabolic pathway has been damaged and find treatments to repair that metabolic pathway. we need to find out who is likely to react to vaccines with certain test and prevent autism/strokes from happening. We need to look at inflammatory disorders and find out the exact process of these diseases. We need to help families and adult ASD individuals be able to find suitable living arrangements to have a full and satisfying life.

b. New opportunities.
Richard Insel made millions from creating the Hib. Tom Insel needs to resign for he is too involved in the vaccine question. vaccines are causing the rise in autoimmune diseases. Please excuse yourself Dr. Insel. and save the world! Testing of people that have autism and their families. There are identical twins out there in which one has ASD and the other does not. Find the test see which individuals in the future do not need booster shots! For me this has been going on for 26 years, and it was happening even longer than that. Shame on all!

c. Research priorities.
Admitting that vaccines are the problem in the rise of autism. I think it is already known and the federal government is playing the old bait and switch game. But if more money must be spent; try the vaccinated and unvaccinated studies. Try to make sure that the ones doing the research is not involved with those that are making their living making vaccines. It is sort of like the tobacco companies that used to research if smoking was the cause of lung cancer. Tom Insel's brother Richard Insel earned millions in making vaccines. Tom Insel needs to quit and let a more honest person run the show

Respondent 0060

a. Gaps and underrepresented research areas.
Bias toward prenatal onset. Recognition of multiple trajectories in autism, including postnatal onset, regression and postnatal influences needed. Restoration of vaccine objectives vetted through IACC science workshops and strategic planning workgroups and approved in 12/2008 and removed in 1/2009 under the false pretext that HHS had conflicts of interest that precluded its pursuit, objectives where not vetted by the science community involved in the strategic planning process and that NIH did not have expertise in vaccine research all of which is demonstratively false when examining public documents within NIH and IACC transcripts. Integration of vaccine safety research objectives needed as they relate to ASD and as identified by NVAC. The plan misrepresents IOM 2004, ignores corrections from IACC SP and science workgroups, and does not cite vaccine science supporting the need for investigation - correction needed. An independent panel to undertake this research is needed.

b. New opportunities.
Funding the National Children's Health study to collect detailed medical records, (Prenatal, post natal and throughout the study) including vaccine mfg and lot number. Expansion of existing short-term objectives to identify environmental factors from 5 to 20 factors and expansion of objectives investigating/identifying biomarkers to 10. Relative to environmental factors, populations in the U.S. must be included in all environmental investigations. Expansion of long-term objectives on effect of environmental factors on risk for subtypes of ASD in the pre- and early postnatal period from 5 to 20 environmental factors and include exposure/exposure and exposure/pathogen mixtures. Expand multi-site study of the subsequent pregnancies of 1,000 women to include monitoring of environmental toxicants prenatally and for first 3 years of life. Mercury is a frequently cited environmental toxin with numerous studies indicating its role in autism - investigation is needed!

c. Research priorities.
Continued and unwarranted bias on genetics research remains in the plan. Given NIH public-private partnerships and the fact that genetic research is well funded by private organizations, monies earmarked for genetic objectives should be diverted into understudied role of environmental factors and their genetic interplay. Wording should be revised to recognize the innovative and novel approaches currently in place or being developed in environmental science, as current wording suggests that cutting edge developments are only occurring in genetics. Environmental research in ASD must build on the substantial pre-existing environmental research infrastructure and informatics, as risk factors are likely to be pertinent to both brain development and chronic systemic features, such as inflammation and oxidative stress in subgroups of ASD. Under-representation of public members allowed federal members to override critically needed research in this section, thus skewing priorities. Please remedy.

Respondent 0063

c. Research priorities.
Identify ALL the toxins we are exposed to that is increasing the risk of autism. i.e.: fluoride, vaccines, antibiotics, chemicals, food additives, pollution 2. genetics lead to a predisposition--all of us can look at our families and see the quirks here and there and mild social difficulties that are chalked up to "personality quirks"--but what toxic soup stirs these all together in one individual to cause such a disabling thing such as autism.

Respondent 0074

a. Gaps and underrepresented research areas.
Vaccines are causing childhood autism, period.

b. New opportunities.
Maybe you could look at the prevalence of ASDs in unvaccinated children, of which there are many.

Respondent 0075

a. Gaps and underrepresented research areas.
A genetic neurological abnormality has occasionally occurred in humans for at least the last 700 years. Always less than about 2% of population, these people happen to be born with a set of abnormal SPRATS. The dynamic interactions of an individual's SPRATS, control the only ways for a mind-body to relate to its environment. Such results in a sometimes-significantly different Thinking System(s), including communication(s). Our experiences indicate that IF the abnormality is more fully investigated, better understood, and applied, prevention would not even be considered. Engineering the condition would. Best applications of the capabilities would.

b. New opportunities.
See III a

c. Research priorities.
From considerable experience working with adults living on the autism spectrum, we know that many individuals will usually come to behave near normally and perform extremely well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately. 1st Understand the abnormality. 2nd Learn how to use the abnormality by appropriate recognition, encouragement and application of the positive aspects. 3rd MOST IMPORTANT inform harassed parents of the utility of the abnormality AND the best way to handle it.

Respondent 0077

a. Gaps and underrepresented research areas.
I am not certain that "prevention" is an important thing. I personally believe in neurodiversity.

b. New opportunities.
N/A

c. Research priorities.
N/A

Respondent 0095

a. Gaps and underrepresented research areas.
see my answer to #1....I did not do this correctly and I apologize for the out-of-order....

Respondent 0102

a. Gaps and underrepresented research areas.
Without a doubt - VACCINES! The vast majority of valid (meaning without conflict of interest) research on this topic shows that the over-vaccination of America's children has been the main cause of the current epidemic of autism. INDEPENDENT research must be done - not funded by the CDC, the FDA, or the NIH - because these supposed regulatory agencies are captives of the industries they are charged with overseeing. The money channeled into these agencies by the drug companies effectively negates the objectivity they should have regarding vaccines.

c. Research priorities.
1. Remove the job of overseeing vaccine safety from the agency that is also responsible for the job of vaccine promotion - the CDC. This organization has become so corrupted by income from the drug companies that it is absolutely worthless to protect American children from vaccine injuries. 2. Do an INDEPENDENT research study of vaccinated vs. non-vaccinated Americans, which records the health outcomes of those in the study - including autism, asthma, allergies, autoimmune diseases, ADD/ADHD, OCD, and other neurological disorders. The answers to that study will give you the answer to your second question, which is - "Can this be prevented?"

Respondent 0105

a. Gaps and underrepresented research areas.
Study on the development and implementation of a sensitive ocular test. Despite the high genetic and psychiatric components in ASD, the neurological system is the most obviously affected, and the ocular system the first to display injury. A meticulous analysis (by instruments) of the awkward ocular motion associated with many individuals with ASD (undetected by even the best ophthalmologists), could enable us to develop an early diagnostic device, available at any hospital or health center, that would identify and reveal the first signs of ASD, long before the development of the apparent autistic symptoms, as early as just a few weeks after birth. This device would not require the active participation of the baby. Although similar studies already exist, the implementation of a handy, sensitive and reliable ocular test is a must.

b. New opportunities.
Please, NO MORE studies with ANIMAL MODELS. They must be banned. We have neither time nor money to waste for this type of research. Despite the genetic similarities between humans and mice, autism cannot be reproduced in any animal model mutant or knock-out, as the behavioral pattern and needs of a mouse or monkey, for instance, are totally different from those of the human. There are many thousands of persons with ASD verbal or nonverbal, high or low-functioning that can be used as models in research studies, according to the research ethics committees.

c. Research priorities.
Study of the pitocin (Oxytocin) levels used during labor and delivery: Despite the fact that ASD has a high genetic component, the alarming increase in incidence and prevalence suggests that other exterior factors are involved. Epidemiological studies in different countries, including States within the US, prove to have varying degrees of ASD incidence, indicating the probable implication of factors related to medical practice and everyday life, that go beyond genes. Oxytocin the hormone of socialization among others, has been overused and even abused in everyday OBGYN practice in many states, that warrants its close consideration, once more, with more accurate data and comprehensive studies.

Respondent 0116

a. Gaps and underrepresented research areas.
I do not believe enough has been done to understand the causes of autism and the developmental delays associated with the kids on the spectrum. I believe that my son's problems are associated with environmental toxins that I had in my system before conception. I have had 3 children and each child has been less affected, with the last being unaffected. This fact implies to me that I was exposed to something that cleared my system over a period of years. I have not seen any research in this area.

b. New opportunities.
We need to find the break down in the brain that is causing the symptoms and figure out, in addition to genes, what environmental factors are causing the expression of these symptoms.

Respondent 0125

a. Gaps and underrepresented research areas.
Etiology is important particularly if it leads to studies of the biology of autism.

b. New opportunities.
To my untrained eye, the most interesting research these days is that investigating the role of the immune system and oxidative stress.

Respondent 0129

a. Gaps and underrepresented research areas.
There is a firm belief among parents, advocates, clinicians, and doctors that environmental insults are severely damaging our children. I suggest that the scope of research in this area is limited. With Autism, every individual presents differently and it's very possible that Autism is really multiple disorders that manifest within a specific set of criteria (see DSM IV-TR). Just as plausible is the belief that there are multiple triggers that push the predisposed children over the edge of quirky or shy into the debilitating world of Autism. One of the most common environmental insults that children come into direct contact with are mandatory vaccinations. An in-depth review of the literature shows that the connection has clearly not been disproven. Agreeing that environmental insults play a role in the declining health of our children and the increase in Autism, it's logical to focus heavily on the most common insult all children are exposed to-Mandatory Vaccinations!!!

Respondent 0131

a. Gaps and underrepresented research areas.
No comment

b. New opportunities.
No comment

c. Research priorities.
No comment

Respondent 0133

a. Gaps and underrepresented research areas.
environmental triggers (INCLUDING IN UTERO) demographics patterns distribution and incidence reporting

c. Research priorities.
Must put to rest the questions "are we just getting better at diagnosing)before priorities can really be set.

Respondent 0134

a. Gaps and underrepresented research areas.
I am not sure that the area I am recommending research has been addressed, but I believe that Dr. John Cannell's hypothesis that a "Deficiency of Vitamin D during pregnancy may be contributing to autism" needs to be addressed. This can be addressed by looking to see if supplementing either women in general who get pregnant with "adequate" levels of vitamin D (meaning having approximately 5000 IU D3 to 7000 IU D3 during pregnancy or a level of 25 hydroxy D3 of at least above 32 ng/ml or preferably above 50 ng/ml, but below 100 ng/ml)would prevent autism or not. The breast feeding mother would also need to be supplemented with approximately 6400 IU D3 to 7000 IU D3 to ensure that the baby would be replete. If not breastfeeding the baby would need to be supplemented.

b. New opportunities.
New opportunities would include a trial of vitamin D in the general population of women who get pregnant with adequate amounts. I do not consider 400 IU D3 adequate. As an alternative, choosing mothers who already have one child with autism and are pregnant, to give that mother "adequate doses of vitamin D" at the level of 5000 IU D3 - 7000 IU D3 per day or ensuring that the level of 25 hydroxy D3 is above 32 ng/ml or preferably above 50 ng/ml, but below 100 ng/ml. This would need to be continued during breastfeeding or if not breastfeeding, the infant would need to be supplemented with vitamin D3. We are actually doing this on a small scale, but it needs to be done on a much larger scale to get meaningful results.

c. Research priorities.
Please see section a. and b. Using vitamin D during pregnancy has the potential to prevent either the onset of autism from pregnant women in general or to prevent the recurrence of autism in mothers who already have one child with autism. This is a fairly long term study--at least 5 years after delivery and the accumulation of large enough numbers to be meaningful. The difficulty would be the ethical question of whether to give control women the current recommended dose of 400 IU D3 or whether enough is now known, that dose is now considered inadequate.

Respondent 0137

a. Gaps and underrepresented research areas.
The search for purely genetic causes of the increased autism rates is a fools mission, fueled, in part, by technical advances in our ability to carry out genetic analyses, a legacy of the human genome project. However, metabolic abnormalities are far more likely to cause autism and, to my knowledge, abnormal reduction-oxidation reaction and methylation status has been demonstrated in every study that examined these endpoints. Recognizing their link to development is key, and the causation focus should centered on agents which are likely to cause abnormal reduction-oxidation reaction and methylation status across the US population.

b. New opportunities.
New opportunities arise from a deeper and more intimate understanding of the relevant biochemical and metabolic pathways which determine reduction-oxidation reaction and methylation status. These include a recognition of the role of selenium metabolism and selenoproteins. Development and stem cell differentiation are closely related topics, both of which are highly dependent upon reduction-oxidation reaction and methylation. Accordingly, there should be a thorough analysis of the effects of suspected or candidate environmental toxins on stem cell differentiation.

c. Research priorities.
The priority should be to screen environmentally encountered chemicals for their effects on cellular reduction-oxidation reaction and methylation status and for their effects on development of stem cells, especially neural stem cells.

Respondent 0139

a. Gaps and underrepresented research areas.
There is scientific evidence that prenatal ultrasound may be causing autism. A 1982 World Health Organization report documenting a symposium on the bioeffects of ultrasound, in its "Human Fetal Studies" summary, declared "animal studies suggest that neurological, behavioral (sic), [and] developmental "changes" can result from exposure to ultrasound." (http://tinyurl.com/klxcug This link exits the Interagency Autism Coordinating Committee Web site). In 2006, Yale neuroscientist Pasko Rakic showed that pregnant mice exposed to prenatal ultrasound produced offspring with brain anomalies consistent with those found in autopsied autistics (http://tinyurl.com/ofpfh3 This link exits the Interagency Autism Coordinating Committee Web site). At present, the Strategic Plan only calls for the possibility of monitoring scientific literature regarding ultrasound, which does not show due diligence in pursuing all possible causes of autism. Previous safety studies indicating prenatal ultrasound is safe no longer apply due to major changes in ultrasound applications, technology and the gestational window of exposure.

b. New opportunities.
Studies that seek environmental risk factors for autism investigate delivery complications, folic acid levels, water and air quality, plastic toys and bottles, paint, flooring, and everything under the kitchen sink -- but NONE include examining maternal ultrasound histories. This was also missing in the 2000 CDC Community Report on Brick Township, New Jersey, which sought an explanation for an apparent autism cluster. Cohort matched retrospective studies could yield telling information in a fairly short amount of time. Also, current environmental studies should be adapted and additionally funded to collect and evaluate ultrasound data. Monitoring scientific literature alone will guarantee failure, as fetal ultrasound safety experts have been repeatedly turned down for grants and have stopped applying. Of particular concern is the timing of ultrasound, which was once cautiously confined to the second trimester but now is done as early as six weeks and right up to delivery.

c. Research priorities.
Every effort should be made to spur research to discover whether ultrasound exposure increases the risk of autism, making it a top priority. In view of the number of unborn children exposed to routine ultrasound scans every day, time is of the essence. Although doctors almost universally rely upon ultrasound screening to estimate gestational age and check for obvious defects, a large randomized study of more than 15,000 pregnant women showed that among both low-risk and high-risk mothers, as well as in situations with multiple gestations or major anomalies, ultrasound screening did not result in improved pregnancy outcomes (Ewigman, B.G., et al. 1993. Effect of Prenatal Ultrasound Screening on Perinatal Outcome. N Engl J Med 329(12):821-"27). While it is believed that the thermal effects of ultrasound are not sufficient to cause birth defects, heat can change gene expression without changing the genes themselves. This would explain why genetic research has not yielded more answers.

Respondent 0140

a. Gaps and underrepresented research areas.
That same as Question 1

b. New opportunities.
-The role of bioaccumulation of toxic and the loss of essential elements in ASD -The development of an adequate testing to properly detect, diagnose and confirm bioaccumulation of toxic elements and alterations in the management of the essential ones and others(Ca/Mg/Zn/Fe/Cu/Se) beyond the known ones. -The role of protein mismanagement (including gluten and casein) in the element bioaccumulation status -The inflammatory and oxidative stress biomarkers in ASD and the connection with bioaccumulation of toxic elements -The gastrointestinal issues in ASD. not studied by phone interviews or records analysis but with the actual biochemical, metabolic and adequate and ethically appropriate testing of ASD subgroups. -The nutritional aspects in ASD beyond pica and selection of food: the role of Selenium and vitamin D3 in health status in ASD -The analysis of encephalopathies related to vaccines given in combination and/or bacterial/viral /fungal co-infections in ASD.

Respondent 0141

a. Gaps and underrepresented research areas.
Cause and prevention research should not be aimed at ASD in general, but specifically at the disabling elements of ASD. There are a lot of strengths inherent in Autistic neurology. In some individuals, it may be difficult for most people to see these strengths if challenges are more readily apparent. If Autism genes were eliminated from the gene pool, it would be a disaster for humanity. Instead of preventing autism, let's prevent suffering. Study the brain not to figure out what causes autism, but to figure out how autistic people learn best. Figure out what causes sensory, social, and communication problems, and how to lessen the disabling aspects of them, without getting rid of accompanying the gifts.

b. New opportunities.
A major cause of the suffering of Autistic people comes not from within themselves, but from society. Some Autistic people are disabled not because of who they are, but from lack of support, services, and options to live in society. It is disabling to have minimal verbal skills because people expect you to speak. If people were more aware and accepting of alternative modes of interaction, it might not be such a disability. Let's cure and prevent ignorance, hatred, and discrimination.

Respondent 0146

a. Gaps and underrepresented research areas.
Recommend study to determine whether we can identify risk factors in parents of children with ASD. For example, we know that the mother's use of alcohol during pregnancy may lead to FAS. Are there other factors, not related to genetics, that effect the rate of ASD? Are parents taking certain prescribed medications? Are there higher incidences in certain geographical areas and if so, why?

Respondent 0148

a. Gaps and underrepresented research areas.
Research topics that are underrepresented are studies of early sensory-motor dysfunction that is strongly associated with ASD. Next, we need to better understand how the primary caregiver's response to atypical infant behaviors impacts on the infants' overall development when developmental delays are better established as the infant grows.

b. New opportunities.
We can learn if neonatal care may prevent babies with sensory integration dysfunction from a later ASD diagnosis.

c. Research priorities.
Developing an efficient, standard protocol for examining infants individual differences in the sensory integration realm that can be taught, attain reliability, and be employed in the first days of life.

Respondent 0151

a. Gaps and underrepresented research areas.
It appears to cover the desired topics. I would like to see additional studies on the vaccine / ASD link in coordination with a genetic pre-disposition to autism.

b. New opportunities.
To gather genetic data to enhance the study of the likely link to ASD, I recommend the government support funding for the gathering of this data. Parents of autistic children are already spending so much and often are limited to single income. Studies that do not directly benefit the child but benefit the cause should be supplemented by government funding.

c. Research priorities.
I would like to see additional research on the vaccine / ASD link in coordination with the possibility of a genetic pre-disposition. Studies should be coordinated internationally and the Defeat Autism Now doctors and scientists should provide recommendations for study based on observations of many cases.

Respondent 0152

a. Gaps and underrepresented research areas.
The etiology of autism is not clear. Some prenatal factors are thought to be responsible for ASDs are maternal rubella during pregnancy, tuberous sclerosis, fragile X syndrome, and brain abnormalities like hydrocephalus. Few perinatal factors appear to be directly related, though one study shows that about one-quarter of babies born prematurely had signs of autism on a screening test performed between 18 and 24 months of age. Some postnatal conditions are associated with ASDs as well. These are untreated phenylkentonuria, infantile seizures, encephalitic, and rarely some kinds of focal brain lesions. There are other studies suggesting that genetics plays a causal role. In families with identical twins, if one twin is autistic, there is a 75% chance that the other will be affected as well. With fraternal twins this percentage drops to only 3%. In families with one instance of ASD the chance that the second child will be born with an ASD is between 2 and 8 percent.

b. New opportunities.
Clearly, there is much work yet to be done in determining the etiology of the Autistic Spectrum Disorders. Neuro-biological research is only beginning, and needs to be extensively and aggressively pursued. Although the hypothesis that vaccines containing thimerosal have caused ASDs has pretty much been disproven, there are still a number of other conditions, such as digestive tract changes, diet, and the effective metabolism of vitamins and minerals that have been hypothesized as contributors to ASDs, but nothing has been proven. Even geographical location has been considered as a trigger of ASDs. In California alone, the number of autistic children has more than quadrupled between 1987 and 2002. A rural town in Alabama is asking why they suddenly have ten cases of autism when there were none before. No ironclad relationship between a particular location and ASDs has been established. Is this just an artifact of our more specific definitions of ASDs or not?

c. Research priorities.
Until recently the diagnosis of the ASDs did not occur until a child turned two or possibly three even though by 18 months families usually suspect that something is wrong. Approximately 25% of children seen in any primary care practice exhibit developmental issues, but fewer than 30% of primary care providers utilize standardized screening tests at regularly scheduled well-child appointments. Pediatricians are limited in their diagnostic opportunities by the fact that they actually see the child only for brief periods and because they are used to relying on conventional classification systems such as the DSM-IV TR. Often it is the concerns of the mother that are pivotal in getting a pediatrician to assess a baby for developmental deviance. Doctors rely extensively on anecdotal reports from parents, who may or may not be accurate reporters of early communicative milestones.

Respondent 0153

a. Gaps and underrepresented research areas.
Disrupted neurogenisis due to ultrasound events and correlations with increased rates of ASD. ref: 1. Ang, E.S., Jr., et al. 2006. Prenatal exposure to ultrasound waves impacts neuronal migration in mice. PNAS 103(34): 12903-10. www.pnas.org/cgi/content/abstract/103/34/12903?maxtoshow This link exits the Interagency Autism Coordinating Committee Web site. Accessed 11 Aug 2006. 2. Keiler, H., et al. 2001. Sinistrality: a side-effect of prenatal sonography: A comparative study of young men. Epidemiology 12(6): 618-23; Campbell, J.D., et al. 1993. Case-controlled study of prenatal ultrasonography exposure in children with delayed speech. Can Med Assoc J 149: 10, 1435-40.

b. New opportunities.
A wealth of prenatal medical records and records of autistic births.

c. Research priorities.
More highly prioritize a possible link between ultrasound events and intensity and children born with Autism Spectrum Disorder.

Respondent 0154

a. Gaps and underrepresented research areas.
Too many vaccines...too many antibiotics....weak immune system = AUTISM

b. New opportunities.
Stop OVER and UNNECESSARILY vaccinating children.

c. Research priorities.
Check titers to see if kids would even need the vaccine before blindly giving it.

Respondent 0157

a. Gaps and underrepresented research areas.
Information needs to be issued in a simple, understandable (i.e. not a lot of medical jargon) format listing factual information based upon the latest research and studies. Basic information on brain function and development and how autism impacts this process would also be useful. It would also be helpful to have information regarding efficacy research for each of the interventions.

Respondent 0161

a. Gaps and underrepresented research areas.
ENVIRONMENTAL CAUSES. There is an underlying genetic basis, we know that. Knowing exactly which gene predisposes one to autism is, frankly, useless--unless a parent is able to ACT on that knowledge by taking appropriate steps to lower their child's environmental risk. It is the environmental triggers that have led to this heartbreaking surge of damaged children, because there is no such thing as a genetic epidemic.

b. New opportunities.
Vaccines. Vaccines. Vaccines. It's not just about the MMR, and it's not just about autism. ALL autoimmune diseases are skyrocketing, and the only reason the autism parents are the only ones screaming is because having a child with celiac disease, or a life-threatening peanut allergy, is just not that big a deal. (I should know, they both run in our family as well. You know, because there is a genetic basis, after all--but we all experienced certain environmental triggers that my grandmother, great-grandmother, etc. didn't live through.) It may be a lifestyle change, but you still have your kid. With autism, the child you had is gone, forever. There needs to be serious examination of each vaccine on the schedule individually, the overall aggressiveness of the schedule, and MOST IMPORTANTLY, the role of adjuvants in immune dysfunction.

c. Research priorities.
Examining the safety of the Hepatitis B shot given at birth should be the number one priority. My newborn baby wasn't having casual sex, and he wasn't an IV drug user. There is NO REASON to give a baby just hours old a shot full of Hepatitis B and immune-altering adjuvants. Babies don't even have a working immune system for weeks, that's why it's critical to breastfeed, so the mother's antibodies are passed on.

Respondent 0168

b. New opportunities.
We need better clinical guidelines to help providers screen for potential indicators or risk. For example, if a family has one child with autism, is born preterm, or has older parents, heightened screening for autism and other developmental delays should be in place.

Respondent 0173

c. Research priorities.
Keep telling them that it is not the vaccine!

Respondent 0176

a. Gaps and underrepresented research areas.
Parents understand that ASD is a lifelong disability. Parents know that the infant, toddler or young child with ASD they presently see will grow into an adult with ASD. Anxiety about raising a child with a lifelong social-cognitive disability can be ameliorated or exacerbated by the level and frequency of biological and behavioral interventions used and by their effectiveness. Additionally, since a child with ASD becomes part of a care team assembled by Early Intervention Services or by the education system, the extent to which the care team assists the child in making progress by supporting intervention efforts and making services fully available to meet the child's needs greatly impacts the child. The extent which a child receives ENOUGH services with ENOUGH frequency and ENOUGH intensity greatly impacts his ability make progress. Care teams, especially in education, need to provide enough services with enough frequency and intensity to assist in overcoming deficiencies in ASD

b. New opportunities.
Children with ASD have pervasive, complex, and critical deficiencies in social-cognitive perception and assimilation. Fortunately, they are extremely intelligent and are therefore excellent candidates for intensive, appropriate biological and behavioral interventions. Support services should maximize independence and functionality by creating and enhancing social skills and understanding. Care teams, both Early Intervention and school-based, should assess and deliver enough services with enough frequency and intensity to effect measurable, linear growth and change every month. Functional communication and social skills goals including spoken or augmentative language (such as American Sign Language) for the nonverbal and perspective-taking (normalizing spoken and intuited communication skills) for verbal children should be accomplished by age 7. Daily after-school programs and ongoing home support must be developed and coordinated to meet the needs of children with ASD.

c. Research priorities.
Determine the priorities and effectiveness of Early Intervention Services and contrast these with the priorities and effectiveness of school-based therapies for the child with ASD who is becoming an adult. Develop care teams delivering biological and behavioral interventions that have measurable, linear developmental results every month, including functional communication skills (as described above) by age 7. Age 7+, build these skills so that each child with ASD can become an independent, fully-functional member of society by age 18. Deliver services with enough frequency and intensity to overcome deficits inherent in children with ASD, even if this means creating daily after-school programs where children can be grouped by developmental capacity and taught accordingly. Provide ongoing in-home support to parents of school-age children when their children get "stuck" so that a professional can assess and develop supports to assist the child and family in moving forward again.

Respondent 0177

a. Gaps and underrepresented research areas.
I think it is absolutely necessary that all of the ingredients in vaccinations be carefully examined and that the truth be told even if the outcome is not what the general public believes or wants to hear. It is time that parents stop being treated like they are crazy for believing vaccinations are a factor. I also believe that if parents continue to vaccine despite research results they need to use a vaccine schedule that is more spread out, one shot at a time and to wait until the child is older and their immune system is more developed and stronger to handle the vaccinations. I absolutely believe this is underrepresented and it always has been. The focus should be the truth and protecting our children not protecting the companies that provide and manufacture vaccines.

Respondent 0181

a. Gaps and underrepresented research areas.
III. What Caused this to Happen and Can this be Prevented? We agree again that both genetic and environmental factors must be researched. We were pleased to see equal consideration of those who believe: 1) vaccines do not play a causal role argue against using a large proportion of limited autism research funding, 2) prior studies of the possible role of vaccines in ASD have been insufficient, and 3) those who shift focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD. We disagree with only consideration of causation by vaccination through exposure to Measles Mumps Rubella (MMR)”, as autism was listed by FDA in the adverse events on the DPT (www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/ucm101580.pdf http://tinyurl.com/klxcug). We were pleased to see recent IACC collaboration with the National Vaccine Advisory Committee. continue...

b. New opportunities.
Until this controversy is resolved, fear will cause herd immunity to decrease which is a public health risk.

Respondent 0187

a. Gaps and underrepresented research areas.
Again, research on nonverbal ASD individuals is needed, and none has been done. There are no doubt many research projects that could be utilize AGRE genetic material, involving families with nonverbal ASD children. No research is being done on nonverbal ASD. This is a critical area that needs research.

Respondent 0194

a. Gaps and underrepresented research areas.
The strategic plan not only stresses the genetic complexity of the disorder, but also the numerous environmental components that may contribute to the cause, course, severity, or complexity of ASD. Unfortunately, to date, most researchers have aimed to study one environmental factor at a time. While this is an important and key step in the search for environmental factors with the highest impact, we encourage more research to study the role of multiple genes and multiple environmental factors, both in animal and cell culture models, as the logical and much needed next step to accelerate progress. Gene x environment interactions are, at best, difficult to sort out in simple diseases. For success in autism, more research is needed on methodology or ways to design studies utilizing the knowledge in epidemiological or animal models.

b. New opportunities.
As higher resolution data on an ever increasing number of subjects are collected, there are additional scientific opportunities to explore, especially in special populations like simplex families and infant siblings of affected individuals. For instance, correlation of genetic profile with rich, longitudinal phenotypic data may yield insight about phenotype-genotype correlation. Similarly, focusing on de novo variations (e.g. CNV) in simplex families may lead to hints about gene-environment interactions.

c. Research priorities.
It is generally agreed that both genetic and environmental factors contribute to risk for autism. Although it has yet to be demonstrated, it is plausible that specific genetic or medical factors that are present in a minority of individuals of autism might also lead to susceptibility to vaccine related adverse events. Autism has been found to be associated with inherited metabolic diseases which might lead to vulnerability for adverse events. Furthermore, recent studies point to a role of innate immune abnormalities in the biology of autism, raising questions about the effects of the immune challenges associated with vaccinations. It is recommended that a research objective be included that focuses on understanding whether vaccines, alone or in combination, can increase the risk for autism in a minority of individuals with specific genetic or medical conditions.

Respondent 0200

a. Gaps and underrepresented research areas.
Is being nonverbal physical as well as mental? Why?

Respondent 0202

a. Gaps and underrepresented research areas.
What caused this? having no voice and less attention to those who cannot speak for themselves

Respondent 0203

a. Gaps and underrepresented research areas.
Environmental concerns

Respondent 0210

a. Gaps and underrepresented research areas.
Ensure studies allow for the use of mixed methodologies so that data collection allows for qualitative data such as interviews, case studies, observation, and open-ended responses to add rich, narrative and themes to the quantitative collections. Adults with ASD and the families that support and continue to support them are critical and should have adequate representation in any data set reflective of the proposed studies on causality and preventions.

Respondent 0211

c. Research priorities.
Priorities should be moved from genetic, since genes cannot be changed to environmental and medical toxicity which are rapidly changing with the increasing prevalence of autism.

Respondent 0213

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism, (often referred to as low-functioning), have been almost entirely excluded from federally funded research. The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autismspectrum population, yet they are not represented in current research nor is there any research specifically focused on them.

b. New opportunities.
Because research on nonverbal/low-functioning individuals has been limited in the past, there is are fewer pilot studies and researchers available in this area. Offering funding for research studies and to train investigators would address this.

c. Research priorities.
Research funding MUST reflect the demographics of the populations it serves. Low-functioning individuals must be included.

Respondent 0215

a. Gaps and underrepresented research areas.
Missing is specific research conducted with nonverbal or minimally-verbal individuals with autism. I'd like to see more attention paid to this specific group with the goals of effective intervention/treatments AND possible pre-natal or genetic testing so that my typical child can make more informed child-bearing decisions.

b. New opportunities.
Same as above.

c. Research priorities.
Same as above.

Respondent 0222

a. Gaps and underrepresented research areas.
More research into causes and prevention related to nonverbal or low-communicating individuals with autism.

Respondent 0237

a. Gaps and underrepresented research areas.
There is scientific evidence that prenatal ultrasound may be causing autism. (http://tinyurl.com/ofpfh3 This link exits the Interagency Autism Coordinating Committee Web site).

b. New opportunities.
Studies that seek environmental risk factors for autism investigate delivery complications, folic acid levels, water and air quality, plastic toys and bottles, paint, flooring, and everything under the kitchen sink but NONE include examining maternal ultrasound histories.

c. Research priorities.
Every effort should be made to spur research to discover whether ultrasound exposure increases the risk of autism, making it a top priority. In view of the number of unborn children exposed to routine ultrasound scans every day, time is of the essence.

Respondent 0240

a. Gaps and underrepresented research areas.
Please consider the possibility that pre-natal ultrasound may be a risk factor for autism.

Respondent 0244

a. Gaps and underrepresented research areas.
No additional comments...

b. New opportunities.
Under Bullet # 3 add the following: Treatment and interventions should be initiated as soon as a diagnosis of ASD has been identified. An Early Intervention Program would be helpful in offering individualized care for infants and toddlers 0-3 years of age who experience a 25% delay in one or more of the five developmental areas: cognitive, vision/hearing, communication, social/emotional and adaptive. Head Start and school based services should also be available.

c. Research priorities.
No additional comments...

Respondent 0245

a. Gaps and underrepresented research areas.
Many nonverbal autistic children have written books and started speaking when they were teenagers or adults. Do you all know this? If not Google this topic so you don't make the same mistake again and start respecting the fact that Autism is a Spectrum: You can't leave out part of the spectrum.
.

Respondent 0246

a. Gaps and underrepresented research areas.
Heavy metal toxicity = symptoms of autism

Respondent 0251

a. Gaps and underrepresented research areas.
an impartial look into the impact of heavy metal burdens in susceptible sub populations.

b. New opportunities.
better diagnosis, diagnostic and testing methods.

c. Research priorities.
Look for commonalities among effected individuals.

Respondent 0257

c. Research priorities.
a. What relevant research topics are missing or underrepresented in section II. "How can I understand what i

Respondent 0258

a. Gaps and underrepresented research areas.
I have read intriguing research that indicates a possible correlation between pre-natal ultrasound and ASD. I am concerned that policy makers and health care specialists are not doing enough to investigate a link between ultrasound and ASD.

Respondent 0262

a. Gaps and underrepresented research areas.
I think your research agenda covers the relevant and likely causes.

c. Research priorities.
Vaccines are a controversial issue, complicated by the fact that there are a few well-documented and legitimate cases of vaccine injury that lead to long-term learning disorders. While I do not support major additional research into vaccine-related causes for autism, I feel that some researchers have closed their minds to the possibility of an environmentally-induced auto-immune problem. As genetic causes are rooted out, I think it is important to keep these possible mechanisms in mind, even if they are reminiscent of vaccine-related research.

Respondent 0264

a. Gaps and underrepresented research areas.
I am a family member of a 15-year-old with autism. His mother has always felt that a prolonged prenatal ultrasound performed by an inexperienced operator was probably the cause of her child's autism. A friend of mine who was a doctor with an international health agency was very interested in this idea. From my own personal reading, I am convinced that prenatal ultrasound may well be the cause of autism and should be a research priority.

b. New opportunities.
I feel that prenatal ultrasound has been in use long enough that a retrospective study, perhaps through an HMO such as Kaiser Permanente, could reveal a connection between prenatal ultrasound and autism. This area should be thoroughly explored for the benefit of millions of babies who are routinely exposed to an imaging technology that may not be reliably safe.

c. Research priorities.
The possible dangers of prenatal ultrasound should be a top research priority. The IACC should do everything within its power to encourage research in this critical area, which has been neglected for many years. Waiting for studies to review is not enough -- prenatal ultrasound research must be actively solicited and funded.

Respondent 0266

a. Gaps and underrepresented research areas.
There is scientific evidence that prenatal ultrasound may be causing autism. A 1982 World Health Organization report documenting a symposium on the bioeffects of ultrasound, in its Human Fetal Studies summary, declared animal studies suggest that neurological, behavioral (sic), [and] developmental . . . changes . . . can result from exposure to ultrasound . . . (http://tinyurl.com/klxcug This link exits the Interagency Autism Coordinating Committee Web site). In 2006, Yale neuroscientist Pasko Rakic showed that pregnant mice exposed to prenatal ultrasound produced offspring with brain anomalies consistent with those found in autopsied autistics (http://tinyurl.com/ofpfh3 This link exits the Interagency Autism Coordinating Committee Web site). At present, the Strategic Plan only calls for the possibility of monitoring scientific literature regarding ultrasound, which does not show due diligence in pursuing all possible causes of autism. Previous safety studies indicating prenatal ultrasound is safe no longer apply due to major changes in ultrasound applications, technology and the gestational window of exposure.

b. New opportunities.
Studies that seek environmental risk factors for autism investigate delivery complications, folic acid levels, water and air quality, plastic toys and bottles, paint, flooring, and everything under the kitchen sink but NONE include examining maternal ultrasound histories. This was also missing in the 2000 CDC Community Report on Brick Township, New Jersey, which sought an explanation for an apparent autism cluster. Cohort matched retrospective studies could yield telling information in a fairly short amount of time. Also, current environmental studies should be adapted and additionally funded to collect and evaluate ultrasound data. Monitoring scientific literature alone will guarantee failure, as fetal ultrasound safety experts have been repeatedly turned down for grants and have stopped applying. Of particular concern is the timing of ultrasound, which was once cautiously confined to the second trimester but now is done as early as six weeks and right up to delivery.

c. Research priorities.
Every effort should be made to spur research to discover whether ultrasound exposure increases the risk of autism, making it a top priority. In view of the number of unborn children exposed to routine ultrasound scans every day, time is of the essence. Although doctors almost universally rely upon ultrasound screening to estimate gestational age and check for obvious defects, a large randomized study of more than 15,000 pregnant women showed that among both low-risk and high-risk mothers, as well as in situations with multiple gestations or major anomalies, ultrasound screening did not result in improved pregnancy outcomes (Ewigman, B.G., et al. 1993. Effect of Prenatal Ultrasound Screening on Prenatal Outcome. N Engl J Med 329(12):821-"27. While it is believed that the thermal effects of ultrasound are not sufficient to cause birth defects, heat can change gene expression without changing the genes themselves. This would explain why genetic research has not yielded more answers.

Respondent 0268

a. Gaps and underrepresented research areas.
What caused this to happen was fear. People in positions of academic power were unwilling or unable to openly admit that something out of the ordinary or even miraculous by our current understanding of consciousness was occurring. By speaking in half-truths, and performing repetitive studies about what was occurring and refusing to address or explain the difficult questions has lead us further from the truth and been a great disservice to these magnificent teachers. It is time to listen! You will not be disappointed.

b. New opportunities.
Let me demonstrate or be part of the team. I will be able to see what you may not see. I will tell the whole truth of my experience. I will share my suppositions. I believe it will save you much time and energy as this has been field of study and my personal obsession and advocacy for the past twenty years. What I have to share is correlated experiences with many different individuals with severe nonverbal autism, who taught me way more than I could have ever taught them. I would like to share what I know for the benefit of these magnificent individuals and those determined to have a better understanding of their perceptual reality. We have so much to learn.

c. Research priorities.
Exploring an evolving form of the Telepathy is mandatory. 1. Sending words/ simple images 2. Breakdowns that occur at the concrete level 3. Partnership in FC or partner dependent typing

Respondent 0269

c. Research priorities.
If you combine the nonverbal group with the low verbal group, it is almost 50% of the kids with ASD

Respondent 0270

a. Gaps and underrepresented research areas.
Please consider allocating funds for research for people with severe autism who do are nonverbal. This subset is the most vulnerable group and in addition requires the most care. Please be equitable in your quest to find a cure for this dreaded affliction.

Respondent 0276

a. Gaps and underrepresented research areas.
Once again, there is a need to focus research on individuals in the lower end of the spectrum.

Respondent 0292

a. Gaps and underrepresented research areas.
More research on Mercury levels in food and how that relates to autism numbers rising. Not only mercury but other heavy metals as well need to be checked and compare the levels of metals to the severity of the condition. Many ways of testing need to be done. If you check only hair samples you won't find many metals in autistic people because they can't excrete them, they are staying in their bodies. Blood, fecal, urine etc. all need to be tested, doing both a pre test, then a post after using a chelator of some form. Also testing needs to be done on nonverbal autistics as well, there is a lot going on in their brains that they just can't verbalize. These people have no voice so they need focused on heavily so they can get better and be able to communicate.

b. New opportunities.
The DAN (Defeat Autism Now) group was not mentioned. Their protocol should be included and studied for effectively curing autism. It covers many aspects and should be considered for study. Also nothing is mentioned about the gut. Research on this is very important and not really ever talked about. Candida overgrowth is a problem in most asd people but i didn't see it covered. Candida is a problem that has to be researched!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Gut health affects about 85% of the overall health of a person's body, if it is compromised then there will be lots of other problems. Also toxin levels are extremely relevant to behavior, speech, etc. That is a huge concern. More needs to be done on research of the safety of the vaccines and the need for so many so soon. The drug companies put 3(ex. mmr) together to save $$$$$$$ not to help our kids and the doctors like it because it is one visit and not 3 and the insurance companies like it for the same reasons.

Respondent 0294

a. Gaps and underrepresented research areas.
The push for getting autistic people to speak is valid. But when speech does not develop there is no planning or action to understand non-communication.

b. New opportunities.
start developing research protocols for such intense study now.

c. Research priorities.
As before, start by investigating the levels and types of receptive language in the nonverbal people with autism.

Respondent 0297

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

c. Research priorities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0300

a. Gaps and underrepresented research areas.
Understanding the relationship between Motor Planning Disturbance and communication for the nonverbal and low-communicating population.

Respondent 0306

a. Gaps and underrepresented research areas.
Its environmental, no doubt. Look at autoimmune issues, perhaps in moms who were vaccinated 25 years ago... passed down to kids, damaging their dna so that the kids were more susceptible.

b. New opportunities.
look at the kids in the Amish community who have never had vaccines in their family history.

c. Research priorities.
find what's wrong w/our kids.

Respondent 0307

a. Gaps and underrepresented research areas.
Hey, how can autism be prevented? Answer- stop injecting our children with toxic substances to "protect" them from these scary diseases, like chicken pox.

b. New opportunities.
I think I have made my point.

c. Research priorities.
GET SOME UN BIASED STUDIES ON VACCINES AND WHETHER THERE IS A LINK BETWEEN THEM AN AUTISM. Again, no drug companies or vaccine makers involved, and no vaccine scientists or family members of vaccine makers involved. IT IS SO UNETHICAL!! Right Tom?

Respondent 0309

a. Gaps and underrepresented research areas.
VACCINATED VS. UNVACCINATED COHORTS. This has not been done since all of the new vaccines were added. It needs to be done!

b. New opportunities.
Use the younger siblings of kids with ASD who are unvaccinated. That way there is no ethical dilemma, Dr. INSEL!!!

c. Research priorities.
All priorities need to be fast-tracked! The numbers continue to rise and that has not caused you to move any faster! WE NEED HELP NOW! WE ARE LOSING A GENERATION!

Respondent 0310

a. Gaps and underrepresented research areas.
Again, there is no such thing as a genetic epidemic. While mention is made of a "dialogue" with NVAC, there are no specific details nor is any study of possible vaccine injury mentioned.

b. New opportunities.
Investigate vaccines and their components and their scheduled administration

c. Research priorities.
Don't have a "dialogue." Fund the study of vaccinated versus unvaccinated children.

Respondent 0312

a. Gaps and underrepresented research areas.
Where is Defeat Autism Now? Where is TACA? Where is the National Autism Association? Autism Speaks is the biggest autism research org in the world, by far, yet IACC did not allow them a seat in a category that is essentially about what is causing autism?

b. New opportunities.
IACC must study vaccine safety, vaccine adjuavants and the effect of so many combination vaccines on an infant's central nervous system. WHY is that entire subject off the table when the vast majority of autism families want it studied by IACC. Why have Insel, Singer, etc. personal biases determined the closing of this avenue of research for every American family? Just because they have no experience with regression and adverse vaccine reactions they do not exist?

c. Research priorities.
Addressing medical conditions now! Why is Alsion Singer a liaison here rather than Lyn Redwood. Redwood is a pediatric nurse with 15 yrs experience leading autism organizations and innovating and funding medical research via SM. Singer has a classically autistic child and sibling and no experience at all dealing with a child who has regressed, a child with medical complications, a child with severely debilitating allergies. Singer was a communications specialist - she is not a scientist or a medical professional. How could Lyn Redwood- the sole public member and health professional not be chosen here? That was such an irresponsible choice. What is Story Landis' expertise in autism? During IACC meetings she seems very unfamiliar with the latest research and therapies.

Respondent 0316

a. Gaps and underrepresented research areas.
Vaccine makers haven't been held accountable. THAT is what's caused this to happen. It doesn't help that the television news media is sponsored almost exclusively by the pharmaceutical industry.

b. New opportunities.
Do a vaccinated versus unvaccinated study. Look at the incidence of ASD as well as other chronic disorders, for both populations. Make sure it's done fairly, by people without conflicts of interest!

Respondent 0318

a. Gaps and underrepresented research areas.
No Comment

b. New opportunities.
I agree with this view: A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD. I believe that more research should be aimed at the RDI model specifically.

c. Research priorities.
No Comment

Respondent 0321

a. Gaps and underrepresented research areas.
I would seriously recommend all public health authorities read Dr. Charles Richet's Nobel Prize award winning speech "Anaphylaxis"...wherein Dr Richet suggests the "scientific likelihood of creating a "one size fits all vaccine" is minimal at best..more likely...undoable.

Respondent 0322

a. Gaps and underrepresented research areas.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY COMORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEaVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH COMORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

b. New opportunities.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY COMORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEAVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH COMORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

c. Research priorities.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY COMORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEAVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH COMORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

Respondent 0323

a. Gaps and underrepresented research areas.
Vaccinated vs. Unvaccinated population study. My daughter regressed immediately after a flu vaccine she received the month of her second birthday. Within days she lost potty training, began having mini seizures, developed very pronounced sound sensitivity, developed chronic ear infection 3 days after the shot, developed extreme car sickness, became afraid to engage in gross motor play activities that she had previously engaged in vigorously (playground type activities), developed severe gut pain and chronic constipation and diarrhea. Her sensory/behavioral regression continued steadily over the following 13 months until we started biomedical intervention just after her third birthday. She responded immediately to treatment and today, at almost 7, is recovered. After review of her medical records from birth to two years, there was a pattern of immediate follow-up to the doctor within one to two weeks of most well baby visits. I believe she experienced several vaccine injuries.

b. New opportunities.
My second child is completely unvaccinated. At two he is thriving both developmentally and physically. The opportunity is to reinstate the two studies Insel stripped out of the strategic plan. 1 study the effects of vaccines and their components and the multiple administration...cell and animal studies to determine adverse effects 2. the feasibility study for the vaccinated vs. unvaccinated study. Also add to the plan all autism related research recommended by NVAC. through I believe there are many potential environmental aluminum, mercury, bpa. Our children suffer environmental insults from external exposures and through medical interventions. Where vaccines are concerned, It's time we get this right...the proper control is a comparison to those who have never received vaccination and a study of the children who developed autism and their mulitfactoral conditions.

c. Research priorities.
First, Tom Insel should step down. He removed vaccine studies from the strategic plan based on conflicts of interest held by HHS and then we learn he has personal conflict. This man has lost the confidence of the great majority in the autism community. He tellsSen. Harkin that more vaccine research is a waste of money yet NVAC clearly stated the gaps and limitations in existing study and supports a vaccinated vs. unvaccinated study. His comments to Harkin were at least inexcusable and possibly criminal. Autism can be prevented. We have climbed to 1 in 100 children with autism. 1 in 65 when you account for those who have lost their diagnosis. If the rate is climbing so rapidly something is causing it and it is high time we treat this with the urgency it deserves. We need, first need vaccine research that compares the proper control, the unvaccinated and we need studies of those who got sick

Respondent 0324

c. Research priorities.
These priorities appear appropriate. I do not believe that additional research is needed regarding the link between vaccines and autism. Again, the amount of money being targeted towards discovering the cause appears disproportionate to the amounts being targeted towards effective intervention and support for those living with ASD. Recommend more balance in funding.

Respondent 0325

a. Gaps and underrepresented research areas.
See previous

b. New opportunities.
See previous

c. Research priorities.
See previous

Respondent 0326

a. Gaps and underrepresented research areas.
We need a vaccinated/unvaccinated study to fully determine the possible causal role of vaccinations in the autism epidemic as well as other chronic health issues from which our children suffer.

b. New opportunities.
Unvaccinated populations exist throughout this country, including home school populations, which could be used in such a study without creating an ethical dilemma for researchers.

c. Research priorities.
An unvaccinated/vaccinated study that looks at health outcomes, including autism, ADHD, asthma, and other chronic childhood illnesses, is top priority.

Respondent 0327

a. Gaps and underrepresented research areas.
My research on the topic indicates that an observational study of vaccinated and unvaccinated children needs to be completed in order to satisfy those groups who continue to blame vaccines for ASD. Researchers must also be cognizant of environmental conditions, such as proximity to environment toxin emitters (i.e. coal-fired power stations) and a diet high in apex predators, such as tuna.

Respondent 0328

a. Gaps and underrepresented research areas.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

b. New opportunities.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

c. Research priorities.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

Respondent 0329

a. Gaps and underrepresented research areas.
same

Respondent 0331

a. Gaps and underrepresented research areas.
We want the vaccinated vs. unvaccinated study done ASAP. It is just shameful that this is not being done.

Respondent 0334

a. Gaps and underrepresented research areas.
we don't have much time.

Respondent 0335

a. Gaps and underrepresented research areas.
Autism Parents need to listen to the research community on this subject. If the real research is telling us to look elsewhere than vaccines, we need to do that. This is the case right now. The questions raised by vaccines were thimerosal and MMR. They have been tested multiple times. We have a limited budget and a limited number of research groups. "Too many, too soon" is not a research hypothesis. Until and unless a good hypothesis about vaccines arises, we need to focus attention elsewhere. Research into vaccine causation is not without costs. The main cost isn't money and it isn't researcher time. The main cost is in giving credence to an idea which is very harmful to autistics and to public health. Research should be driven by science, not politics. At present, the vaccine question is political, not scientific.

Respondent 0337

a. Gaps and underrepresented research areas.
- Identify genotypes - Identify, if any, environmental factors that might trigger ASD

Respondent 0340

a. Gaps and underrepresented research areas.
Vaccines have to be researched. I have read the research that the CDC, FDA and others cite when they say that the vaccines question has been answered. I can see the shortcomings of this research and understand how these studies simply do not stand up to scrutiny.

b. New opportunities.
The vaccine-related studies previously removed should be restored: 1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000 Additionally, a primate study to replicate Hewitson's work should be performed.

c. Research priorities.
Again, I suggest less funding for genetic research - genetic research to date has become a never-ending, resource-consuming cycle of (1) The leads in the previous study didn't pan out, but (2) we found some new, promising leads, and (3) we need more money to investigate them.

Respondent 0342

a. Gaps and underrepresented research areas.
Do vaccines cause autism and can it be prevented by making safer vaccines?

b. New opportunities.
A large, unbiased, observational study of vaccinated versus unvaccinated children and their rates of autism.

c. Research priorities.
1-Do vaccines cause autism and can it be prevented by making safer vaccines? 2-Could an exposure to something in the environment lead to the development of ASD? 3-How might genetics and/or the environment influence the occurrence of ASD? 4-Is there something in my genetic or family history that poses a risk for ASD?

Respondent 0343

a. Gaps and underrepresented research areas.
* Antibodies to Myelin Basic Protein (MBP) have been found to be associated with the measles vaccine virus in the MMR in the damaged guts of children with ASD (V.K. Singh et al), thus triggering autoimmune reaction, damaging the protective lining of the cranial nerve systems. What can be causing this? One potential answer: the MBP as a contaminant in the chick embryo cells that the measles vaccine virus is cultured on, causing a molecular mimicry response in the child's immune system. The Honda/Rutter study out of Japan has been reviewed and shown to demonstrate a dose-response relationship of ASD to the MMR. This whole area needs further research. * The use of ultrasounds needs a major research initiative. Its safety is NOT established well. Its use has grown at the same time as the increase in incidence of ASD - and at earlier stages of pregnancy. This is a MUST area for further research. * The combination of thimerosal and aluminum in vaccines needs more research.

b. New opportunities.
* Another source of research needed is the effect of EMFs, particularly on the ability of cells to excrete mercury and other heavy metals. There is some evidence that that ability is hampered by the presence of EMFs, from mobile phones, etc. We need to advance our research and knowledge in this area. * The role of MSG/glutamic acid in both the diet and its presence in vaccines needs to be further researched. In the presence of vaccines, this excitotoxin comes in an inflammatory package to start with - NOT a good idea. This HAS to be putting an inflammatory load on the brain. And it is also lowered by a GF/CF diet; so that factor should be explored further. * The effect of pesticides is also an area of research need. In all this, I recommend a review of the material developed by Prof Richard Deth and Dr Russell L. Blaylock in particular. They have very important things to say about this matter; and Prof Deth should be supported in his ongoing lab research on ASD.

c. Research priorities.
Priorities: (1) The role of antibodies to MBP in relation to vaccines and their contaminants. (2) The potential role of ultrasounds (heating effect) in this tragedy. (3) The role of thimerosal/aluminum in vaccines, and their interaction with testosterone. (4) The role of MSG/glutamic acid in the development of ASD. (Glutamic acid lowers glutathione levels, which causes the body to be unable to excrete mercury/heavy metals efficiently.) (5) The role of genes coding for glutamic acid, which causes those children to be more susceptible to damage from environmental influences, like mercury/aluminum, etc. (6) The role of a genetic polymorphism that makes some children have lower levels of glutathione to start with, so that they could be spared from heavy-metal environmental influences on their development - ie, be screened from certain vaccines. (7) The role of other sources of mercury on the fetus, like amalgam fillings, fish, flu vaccines, etc. Screen pregnant women better!

Respondent 0345

a. Gaps and underrepresented research areas.
- more emphasis is needed on health outcomes of vaccinated/unvaccinated populations (retrospectively)

Respondent 0347

a. Gaps and underrepresented research areas.
This is so important. I have a nonverbal 24 year old who and a 26 year old who is nervous about having a family one day. My daughter loves her brother, but doesn't want to live my life. Please try to find out all the reasons these individuals are autistic and don't forget to look into why some have a more severe disability than others. Do not forget the nonverbal autistic.

c. Research priorities.
Don't forget the nonverbal autistic.

Respondent 0349

a. Gaps and underrepresented research areas.
My grandchildren got ASD from their vaccines. It can perhaps be prevented if vaccines and the toxins in them are truly studied and also children are tested somehow for vulnerability of damage from vaccines.

Respondent 0350

a. Gaps and underrepresented research areas.
Vaccinated vs. Unvaccinated studies need to done. And most definitely we need to examine the children who regressed after vaccination to try to find out what predisposes them to vaccine injury.

b. New opportunities.
We need to fund research into environmental triggers for autism.

c. Research priorities.
We need to stop pouring millions into genetic research and to make environmental triggers the priority.

Respondent 0353

a. Gaps and underrepresented research areas.
Environmental triggers need to be studied, including vaccines.

c. Research priorities.
My suggestions are to ensure that no one on the panel, including but not limited to the chair, have current or former ties to any of the environmental triggers that need to be thoroughly investigated - including the HiB vaccine. It is highly inappropriate for the investigation to be chaired by, or to include, the brother of a vaccine manufacturer, when one of the environmental factors that needs to be included, is childhood vaccines. http://www.ageofautism.com/2009/08/when-vaccine-development-is-family-business-thomas-insels-conflicted-role-on-vaccines-and-autism.html This link exits the Interagency Autism Coordinating Committee Web site

Respondent 0354

a. Gaps and underrepresented research areas.
Why can my son not talk but he has autism but so intelligent and has 100% understanding of receptive language and he cannot speak words? WHY NOT? If he could speak or communicate he could show how smart he is-- we NEED research for the 50% of our kids who cannot communicate or low communicators to find why and what will be cure to bring speech back

b. New opportunities.
He could speak when he was 1 and then it went away--WHY? We need research on WHY speech regresses until gone and research to BRING HIS VOICE BACK--

c. Research priorities.
If our kids with ASD would communicate basic wants and needs so many behaviors go away and they can lead more independent lives-- he NEED RESEARCH PLEASE

Respondent 0360

a. Gaps and underrepresented research areas.
The beliefs of thousands of parents that vaccines have caused the current epidemic have been totally ignored. We need unbiased leadership in determining what research should be funded. Insel should resign. His personal and professional ties to the vaccine industry should immediately disqualify him from such decision.

Respondent 0362

a. Gaps and underrepresented research areas.
This section glosses over the vaccine and autism issue and mentions the studies that have found no relationship between ASD and vaccines but does not mention the studies that HAVE found a relationship. That is worrisome, especially when parents are reporting that their children regressed into autism around the time of vaccination. When is IACC going to take these parents concerns seriously? Another worrisome factor is the conflict of interest that Tom Insel has regarding vaccines. At one point during his career, Mr. Insel worked in vaccine development. Dr. Insel's brother is also a vaccine developer. In fact, his brother helped develop one of the vaccines in question in the vaccine/autism debate.

b. New opportunities.
Parents are calling for vaccine research for several reasons. The first reason is that parents are reporting vaccine reactions in their children that is followed by a change in their child's development. The fact that these anecdotal are not taken seriously by IACC, AAP, and CDC is deeply concerning to parents. Perhaps years ago this stance could have been considered fringe, but no longer. There are simply too many parents that have witnessed the vaccine reaction followed by developmental regression. Secondly, most of these families are reporting the same type of medical problems once their children go through this regression. It would be easy to study these children to try to figure out why their health has suffered since vaccination. Third, many of these families have similar genetic familial backgrounds. Most report a history of autoimmune issues in their families. The goal to figure out which babies are at risk for vaccine reactions should be a priority.

c. Research priorities.
There has been millions spent on genetic research without much to show for it. I feel that some day we will be dealing with Autism(s) vs. Autism. There is evidence that we are, at the very least, dealing with two types of autism. One type that is evident at birth or soon thereafter. The other is a regressive type, which seems to account for most of the new cases. The first type may be the "classic" type that has reported on for 60 + years. And perhaps that is genetic or is due to a prenatal exposure of some sort. What is evident is that this classic type is getting all of the research dollars. The regressive type of autism accounts for most of the new cases and is most likely environmental. It makes more sense to spend the bulk of the research money on environmental causes of autism, including vaccines.

Respondent 0364

a. Gaps and underrepresented research areas.
A vaccinated versus unvaccinated study should be done. All autism related research recommended by the NVAC should be done.

Respondent 0366

a. Gaps and underrepresented research areas.
The cause of so many children being labeled is that too many doctors are not assessing children for medical conditions. They are lazy and send behavioral issues to the psyches instead of doing their job. The other cause is the standards of care. Too many doctors are using the poorly thought out standards of care as a way to be lazy and refuse assessment and treatment for medical issues. Insurance companies are depending on neurological labels to prevent payment on medical treatments. So, Greed and laziness is the problem

b. New opportunities.
1. change the standards of care to include a medical assessment for food allergies and intolerances and do not allow insurance companies to use a neurological label to prevent medical treatment.

c. Research priorities.
1. change the standards 2. put legislation on the books to prevent insurance corruption 3. train doctors to look for medical issues such as food allergies before they send a kid up for psychiatric assessment

Respondent 0367

a. Gaps and underrepresented research areas.
Change the vaccine schedule.

b. New opportunities.
Change the vaccine schedule.

c. Research priorities.
Change the vaccine schedule. Better yet, why don't you research the health of the children under the care of Mayer Eisenstein in Chicago.

Respondent 0368

a. Gaps and underrepresented research areas.
There needs to be research done on the role that vaccines play in autism. There has been no study on a vaccinated vs. an unvaccinated population. An unvaccinated population exists (e.g. homeschoolers) and could be studied without ethical problems. There has also been no study on the effects of multiple vaccines given at once. Why not? Doctors are careful when prescribing drugs that will be taken together because of possible interactions -- it seems that at least some study should be done on the effects of multiple vaccines given at the same time.

b. New opportunities.
What vaccine research has been done has been epidemiological in nature. We need to investigate vaccines from a biological, toxicological, immunological standpoint.

c. Research priorities.
Vaccine research is critically important. It should be a number one priority. Thousands of families have watched their children regress after vaccination. Science begins with observation. Why haven't the observations of these families (who know their children best) been taken into consideration?

Respondent 0370

a. Gaps and underrepresented research areas.
In multigenerational autistic families are the subsequent generations more severely affected and if so why?

b. New opportunities.
Do genes and environment interact to cause autism?

c. Research priorities.
We are a family with two generations of autistic persons, probably at high risk for a third generation. A very early in utero test is needed for our sons and daughters. For those raised with an autistic sibling having an autistic child is especially emotionally difficult.

Respondent 0373

a. Gaps and underrepresented research areas.
VK Singh's research on Myelin Basic Protein autoantibody testing. Vaccinated/Unvaccinated study of existing populations of children, studying all health outcomes.

Respondent 0376

a. Gaps and underrepresented research areas.
The cumulative amount of mercury in multiple injections on the same day has NEVER been studied -- some vaccines have been studied independently, but not the cumulative load.

Respondent 0377

c. Research priorities.
The two studies that Insel removed need to be reinstated: the feasibility study for a vaccinated vs. unvaccinated study and all autism related research recommended by NVAC

Respondent 0379

a. Gaps and underrepresented research areas.
Research is needed into vaccine safety and the role vaccines play in potentially causing, triggering or worsening autism. We also need the vaccinated/unvaccinated study, as recommended and deemed to be possible by Dr. B. Healy among others.

b. New opportunities.
The vaccinated/unvaccinated study.

c. Research priorities.
The vaccinated/unvaccinated study.

Respondent 0385

a. Gaps and underrepresented research areas.
Again, determining the cause of ASDs is important, but helping the children and adults that are currently on the spectrum is of equal importance. Prevention is no longer an issue once your child is diagnosed.

Respondent 0388

a. Gaps and underrepresented research areas.
This is the one area that is not underrepresented. The prevailing wisdom has been de-ontilogical if we find the reason, then we can find the cure. Okay- if a person nearly drowns or is struck by a car, we know the cause, but does that really lead to breakthroughs in medicine, or is the understanding of what is actively happening in the body and brain the means to the effective treatment

b. New opportunities.
It's being done.

c. Research priorities.
Till we have effective treatments, move on!!!!

Respondent 0391

a. Gaps and underrepresented research areas.
Unvaccinated cohort must be compared to vaccinated cohort.

c. Research priorities.
Unvaccinated cohort must be compared to vaccinated cohort.

Respondent 0396

a. Gaps and underrepresented research areas.
immune response total load with toxins use of antibiotics over generations to create problematic immune systems food sources

b. New opportunities.
no opinion in this regard. I think these are epidemiology questions.

c. Research priorities.
no opinion. I think these are epidemiology questions

Respondent 0399

a. Gaps and underrepresented research areas.
You must look at vaccinated vs. NEVER-vaccinated children for autism, pdd, adhd, add, etc. You don't need to do an experimental study which Insel says is unethical. Look at the LARGE population of already unvaccinated kids. This issue will NEVER go away until this study is done by INDEPENDENT researchers. Stop wasting time and money. I'm ashamed of Insel and this committee.

Respondent 0403

a. Gaps and underrepresented research areas.
Looks great to me

b. New opportunities.
None

c. Research priorities.
None

Respondent 0406

a. Gaps and underrepresented research areas.
Vaccines need to be further studied. The question has not been asked and answered, no matter how much Tom Insel wishes it was.

Respondent 0408

a. Gaps and underrepresented research areas.
There MUST be studies comparing vaccinated vs. completely unvaccinated children. There MUST be studies of multiple vaccines given on the same day. The pharmaceutical industry's influence on regulations and vaccine schedules has to examined and laid bare for the public to see. There must be studies about the damage we are doing to our food supply with hormones, preservatives, pesticides, etc.

b. New opportunities.
There is already a large part of the population out there who are not vaccinating and eliminating toxins from their lives. Start a study NOW so that five, ten, fifteen years down the road we've not missed the opportunity to compare the effects of the filth we've been putting in our bodies. Also look at the veterinary world and see the discoveries that they've made about hyper-vaccinating animals and how some breeds are more susceptible to ill-effects from vaccinations than others.

c. Research priorities.
This needs to be third in line. Treatment first, Education of Pediatricians to aid early diagnosis 2nd, Causation a VERY close third.

Respondent 0411

a. Gaps and underrepresented research areas.
Cumulative effects of vaccines need to be studied. Although I do not know what caused my son's autism, I know MANY parents who have clear evidence that vaccines caused their child's autism. For example, a video of a child at his birthday party engaging like a typical child. Less than a week later, the child receives vaccines. The child begins crying immediately after the vaccine is administered, which is entirely normal. However the child continues to cry for hours after they arrive home, develops a fever, becomes quiet which is typical for an ill infant but after the fever goes away, the child never snaps out of being quiet, stops talking, begins to rock in the corner on a daily basis and is identified with autism. How can you dispute that?

b. New opportunities.
Make sure there are no conflicts of interest when studying the effects of vaccines and the environment. Parents have lost trust in organizations like the CDC, NIMH and big-pharmaceutical because these conflicts of interest come out after the fact. Mistrust is expensive. This group of parents with ASD children is growing. Something must be done before an all-out revolution erupts.

Respondent 0419

a. Gaps and underrepresented research areas.
The Vaccine Court awarded Amy Poling a financial settlement stating that her autism was caused by the MMR vaccine. She was said to have an underlying mitochondrial disorder that was a precipitating factor. Children should be screened for this mitochondrial disorder prior to vaccinations. Also, it is a question of the chicken and the egg. Before and after tests should be conducted. Do children who don't have mitochondrial disorders later develop them after receiving a series of vaccines? There might be two causation scenarios: genetically inheriting the disorder from the parent, or, acquiring it from vaccines. The incidence of autism is higher in those children living near power plants. Does that proximity, coupled with vaccines, make their autism and health symptoms worse than those in the general population? Are the symptoms and health problems (gut, immune, metabolic, allergies) more severe in children who are heavily immunized as opposed those who receive less immunizations? Or, imm

b. New opportunities.
In a study, macaque monkeys received the same regime of vaccinations as would human babies with the doses adjusted proportionately for their little monkey size.(Based on the vaccine loads our kids were subjected to in the 1990s. The vaccinated versus the unvaccinated monkeys showed autism-like signs and symptoms in infant monkeys vaccinated the same way. The study's principal investigator, Laura Hewitson from the University of Pittsburgh, reports developmental delays, behavior problems and brain changes in macaque monkeys that mimic "certain neurological abnormalities of autism..." The researchers also reported that "vaccinated animals exhibited progressively severe chronic active inflammation [in gastrointestinal tissue] whereas unexposed animals did not. We have found many significant differences in the GI tissue gene expression profiles between vaccinated and unvaccinated animals." Scientific studies as well as many parents report severe GI ailments in children with regressive autis

c. Research priorities.
Congress, as part of the "Combating Autism Act" of 2008, specifically set aside money to research a possible connection between vaccines and autism. Yet, on January 12, 2009, and without prior public notice, the IACC majority voted to remove those allotted moneys. This was a totally ILLEGAL maneuver for which they must be made accountable. The conflict-of-interest riddled IACC Chair, Tom Insell, and the IACC government members of the committee seem overly interested in studying genetic causes of autism and hostile to studying environmental causes. They also dismiss assessing the biomedical treatments which are helping so many of our kids. THE MONIES SET ASIDE BY CONGRESS FOR THE TWO STUDIES THAT THE IACC ILLEGALY DITCHED MUST BE USED IMMEDIATELY IN THE PURSUIT OF SAID STUDIES.

Respondent 0420

a. Gaps and underrepresented research areas.
It's frustrating for me a parent that recovered my child and hundreds others from autism and organizations like the AAP does not endorse biomedical treatment for ASD. Why is there a confusion on the toxicity of mercury and aluminum? Our children have the same symptoms as mad hatters disease which was proven to be caused by mercury. We have children being chelated of heavy metals and they excreting mercury and are getting better. I have come to the conclusion that the causes autism are known but it is not convenient to uncover the mystery of it. There are so many people accountable for the explosion of autism, asthma, diabetes, learning disorders, and other immune related problems. Yes, there is a genetic predisposition to autism. We know genes can be manipulated through environment and diet. None of this is easy for the pharmaceutical companies and the government that has allowed them to poison our children; nor is it easy for the food industry or industries that pollute or

b. New opportunities.
I have helped hundreds maybe thousands of families and I have not heard or seen on mother have another autistic child; once she has become proactive and researched vaccines. Started eating whole foods and foods rich in probiotics.

Respondent 0421

a. Gaps and underrepresented research areas.
environmental studies vaccinated/unvaccinated number of increased vaccination earlier in infancy vs. smaller # in previous generation we have a cohort of 5,000 kids with medical records in vaccine court..find the Chicago group and do the research with non-biased researchers

Respondent 0422

a. Gaps and underrepresented research areas.
No one has been able to create a communication system that is useful in the real world for intelligent, nonverbal children. This will limit my daughter greatly and increase the cost to the social system for her care and protection. This child is very social and loves to be in the company of others. But I see her frustration at times when she is left out of the conversation because she just doesn't understand.

Respondent 0426

a. Gaps and underrepresented research areas.
Just do the vaccine research. Everyone already knows, as you write, that a link between autism and vaccines is unsupported by the research literature, but everyone ALSO knows that the research to date on vaccines and ASD would not highlight many relationships were they to exist. Ask the most educated advocacy groups what study design they would consider authoritative, and just do it. People are not stupid. They know that vaccines are vitally important, they want to get their kids and themselves vaccinated. But they need to know which kinds of vaccines (e.g. what formulations, components, etc.) are safe for which people during what period of development.

b. New opportunities.
Autoimmune disease. Viral infections. Chronic inflammation. It is shocking how much research money is still going to describing the features of autism, when there is ample evidence that the features are only a downstream result of some long on-going disease process.

c. Research priorities.
Do the vaccine research. Do a lot of it and do it right. You are the only people with the money to get this cleared up.

Respondent 0429

a. Gaps and underrepresented research areas.
Research into environmental triggers such as everyday chemicals and toxins (pesticides, mercury in light bulbs, etc.) and vaccines.

b. New opportunities.
"Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011" and "Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011."

c. Research priorities.
1. Vaccines 2. Other environmental triggers: pesticides, mercury in everyday household items, etc.

Respondent 0430

a. Gaps and underrepresented research areas.
Study the children with regressive autism.

b. New opportunities.
Study the children with regressive autism.

c. Research priorities.
Study the children with regressive autism. Study vaccinated vs. unvaccinateded children. Dr. Insel needs to step down as there appears to be a conflict of interest surrounding this type of study. I do not believe this is a perceived conflict, I believe it is real.

Respondent 0432

a. Gaps and underrepresented research areas.
The two programs of vaccine research that were part of the approved draft plan last December must be restored. This is of the greatest urgency as these will examine the role vaccines play in the chronic diseases of childhood, especially autism, and lead to either focusing on other environmental triggers or changes in the schedule/screening in order to reduce vaccine-caused chronic illness. These two initiatives are: 1) Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. $10,000,000

b. New opportunities.
"Cause" research should also include the intensive real-time study of children as they first manifest symptoms of autism. As long as the bulk of the research dollars is going to research such as eye gaze studies and autism father's mate's body type preferences, and single genetic markers we will never get any closer to conducting meaningful research which recognizes that autism is a medical disease that effects whole body systems and not just a "mysterious behavior disorder" that can only be addressed by psychiatrists with psychotropic drugs. Three years after the CAA's passage, there has been no relevant research nor any new treatment funding that addresses my daughter's debilitating GI pain, failure to gain weight and absorb nutrients, ability to sleep through the night, extreme self-injurious behavior, compromised immune system, etc., etc., etc.

c. Research priorities.
Although the present plan claims autism is a national health emergency, it must contain specific steps to address autism with the same urgency as, e.g., SARS, H1N1, Chinese toys, and E. Coli. At a minimum, the funding process must be revamped to move research quickly into the lab and out into the field. The budget must be increased substantially to reflect the astronomical cost to families and society and the benefits of preventing new cases and implementing treatments leading to practical recovery.

Respondent 0436

a. Gaps and underrepresented research areas.
My son had a test three weeks after his birth to determine whether there was any retardation present. There was none. When he was three, he was diagnosed with autism. I believe the childhood immunizations caused his regression into autism. We need to research vaccine injury in children with autism.

b. New opportunities.
We also need to research environmental factors in causing autism. There are more incidents of autism where children live around landfills. Also living too close to agricultural areas where they're using pesticides causes increases in autism.

Respondent 0439

a. Gaps and underrepresented research areas.
Environmental Research! Both the scientific and education communities know there has been exponential growth in the number of children with autism. That is a clear indication of an environmental exposure causing the increase. You must do a vaccinated vs. unvaccinated study. There are thousands of families currently not vaccinating their children available for the study. This study is mandatory. My son regressed into autism following his vaccinations. I know it was his vaccinations because I treated his various medical problems caused by vaccination and now, he no longer has autism. His health has returned. Study the children who have fully complied with the current CDC recommended vaccination schedule and those who have never been vaccinated. Then compare health outcomes. The American children and families deserve this study.

c. Research priorities.
Please, please stop with the extensive genetic research. You cannot have a genetic epidemic. Yes, there is a genetic predisposition in our children to regress after an environmental insult. Your time and our money would be better spent on finding and eliminating that environmental insult thus providing prevention. That is what I hope for, preventing additional injuries to children. No one wants to watch their child and or any child live daily with pain - preventable pain. Please use my money efficiently.

Respondent 0440

c. Research priorities.
This section of research is vastly over prioritized relative to other sections. Research into prevention should be of lower priority than ensuring that the people who are already here right now are receiving adequate and effective services and assistance. A significant amount of the funding dedicated to this section needs to be shifted, preferably to sections 5 and 6. Additionally, bioethics discussion (again, including adult autistics and other disability rights proponents) should take place regarding much of the research in this section.

Respondent 0442

a. Gaps and underrepresented research areas.
There needs to be a "conflict of interest free" study done of fully vaccinated vs. unvaccinated children to determine the rate of autism spectrum disorder in both groups. Also, a study of current full vaccine schedule (2009) vs. the old vaccine schedule (circa 1989) to determine whether the increase of the number of vaccines administered to children under the age of 2 has impacted the rates of autism. These studies have not been done. Studies done tonight are flawed or rife with conflicts of interest.

b. New opportunities.
There are many parents of unvaccinated children who are willing to participate in the study. The IACC just needs to reach out to the community. There is no ethical dilemma in conducting such a study because there are so many parents not vaccinating who are already willing to participate in the study. A lot of these kids are the ones who have genetic markers as well. Our oldest son was fully vaccinated through age 2.5, he has Autism. Our second son was vaccinated only through age 6 months, he is neurotypical. Our daughter who will be born this month will receive no vaccines at all. My wife's mother has Lupus a suspected genetic marker. We are happy to participate in a study. We have many friends who have not vaccinated at all, or very limited vaccines, who will also participate in the study.

c. Research priorities.
My suggestions are listed above. I want to make it clear that parents of ASD kids all want children to be safe from disease, but just not at the cost of causing autism. Autism is worse than most of the diseases we try to prevent with vaccines. Just come live at my house for a week. While genetic predisposition should be studied, the role the increase in the number of vaccines administered over the last 20 years from 11 to almost 40 now needs to be adequately studied. We still can have heard immunity by spreading out the vaccines over time if it is determined that rates of autism are higher in the fully vaccinated. IF the CDC is so concerned with dropping vaccine rates the only way to stop the drop is to conduct the study all parents want done. The studies done to date have flaws. The science is not complete. Be smart. Be neutral. Honor your commitment to the children and next generation of Americans.

Respondent 0443

a. Gaps and underrepresented research areas.
This area is dramatically under-funded, especially on the question of environmental cause. Although there is a strong consensus in the scientific literature that autism is caused by environmental triggers in genetically susceptible individuals, most of the cause money is devoted to searching for the elusive autism gene and not for the environmental triggers that might actually lead to prevention. Autism cannot be solely genetic, since it has gone from 1 in 10,000 to 1 in 100 in just over a decade.

b. New opportunities.
We need more vaccine research- research on vaccines in combination, since that's how they are always given nowadays; research on single spaced-out vaccines (alternative schedule) versus the current schedule; research on vaccinated vs. unvaccinated; research on ingredients in combination, such as thimerosal and aluminum; research on pregnant women receiving vaccines; research on preemies receiving vaccines; etc.

c. Research priorities.
Vaccine/environmental research should be the highest priority.

Respondent 0453

a. Gaps and underrepresented research areas.
Epidemics are not genetic. They are environmental. It is misguided to channel so much funding into discovering the elusive autism gene, when this does not explain the dramatic rise in autism. Yes, there is a genetic component. But much more important would be to fund research into the environmental triggers that are causing the epidemic so that we can prevent further children from being so tragically injured.

b. New opportunities.
The two programs of vaccine research that were part of the approved draft plan last December must be restored, as these will examine the role vaccines play in the chronic diseases of childhood, especially autism, and lead to either focusing on other environmental triggers or changes in the schedule/screening in order to reduce vaccine-caused chronic illness. These two initiatives are: 1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed cost: 10,000,000

c. Research priorities.
I have researched the causes of my son's condition for thousands of hours. I am convinced that the excessiveness of the vaccine schedule in infancy caused my son's tragic regression into the bizarre world of autism. The vast majority of other parents of children with autism are similarly convinced of their child's regression following vaccination. Why is this being continually ignored?! We are now up to 1 in 100 children being diagnosed with autism. How many more children must be injured before this epidemic be haulted?! It is of great concern that the chairman of the IACC, Tom Insel, who has ties to the vaccine industry, and CDC, were permitted to cancel out the above named carefully crafted measures that the autism community had advocated for which would have addressed the role of vaccines in the dramatic rise of autism.

Respondent 0454

a. Gaps and underrepresented research areas.
Although there is a strong consensus in the scientific literature that autism is caused by environmental triggers in genetically susceptible individuals, most of the cause money is devote to searching for the elusive autism gene and not for the environmental triggers that might actually lead to prevention. Please restore these 2 initiatives to the plan: These two initiatives are: 1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000

b. New opportunities.
The two programs of vaccine research that were part of the approved draft plan last December must be restored. This is of the greatest urgency as these will examine the role vaccines play in the chronic diseases of childhood, especially autism, and lead to either focusing on other environmental triggers or changes in the schedule/screening in order to reduce vaccine-caused chronic illness. 1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000

c. Research priorities.
environmental and vaccine research areas are dramatically under-funded, especially on the question of environmental cause. Although there is a strong consensus in the scientific literature that autism is caused by environmental triggers in genetically susceptible individuals, most of the cause money is devote to searching for the elusive autism gene and not for the environmental triggers that might actually lead to prevention. The two programs of vaccine research that were part of the approved draft plan last December must be restored. This is of the greatest urgency as these will examine the role vaccines play in the chronic diseases of childhood, especially autism, and lead to either focusing on other environmental triggers or changes in the schedule/screening in order to reduce vaccine-caused chronic illness.

Respondent 0455

a. Gaps and underrepresented research areas.
Vaccination studies need to be done. Environmental studies need to be done (water, plastics, lead, mercury, frequencies from satellite, radio, cell phone, etc.) Additional genetic and autoimmune studies need to be done for parents with multiple children with autism.

c. Research priorities.
Vaccination studies need to be done. Environmental studies need to be done (water, plastics, lead, mercury, frequencies from satellite, radio, cell phone, etc.) Specific test should be done to test the following: -Drinking water -Bottled water -Baby & toddler toys -Baby formula -Ultrasounds Additional genetic and autoimmune studies need to be done for parents with multiple children with autism.

Respondent 0458

a. Gaps and underrepresented research areas.
This is so important. The genetic and environmental factors that contribute to autism should be a primary focus of research dollars. We could learn how to protect some or all of autistic individuals from developing symptoms.

b. New opportunities.
I think that large scale studies of environmental exposures in autistic and non-autistic individuals should be conducted. For example, a research study that including blood and urine analysis of thousands of individuals from birth to compare the results of those who develop severe autism to those that develop high functioning autism and those do not develop autism symptoms. The lack of large, well conducted studies of environmental toxins (including those that come from vaccines) is the root of the belief that vaccines may not be safe.

c. Research priorities.
These objects are all so important they are difficult to prioritize. We should be spending the majority of research money on section III research goals.

Respondent 0459

a. Gaps and underrepresented research areas.
I think we should do more research into how anti-autism bigotry can be prevented.

b. New opportunities.
First off, I would suggest rounding up the leading members of organizations such as Autism Speaks and collecting a DNA sample from each of them.

c. Research priorities.
I think this should be a top priority because their bigotry caused the widespread anti-autism prejudice epidemic to happen. If bigots like them could be prevented from existing, less autistics would be suffering from depression and millions of lives would be saved from the decreased suicide rate. Also, millions of dollars would be saved from families being less pressured to spend money on quack treatments for their autistic children.

Respondent 0461

a. Gaps and underrepresented research areas.
Research into the amount and types of vaccines and it's affect on the immune system and as one of the possible causes of autism/autistic symptoms. Study on rates of autism in vaccinated and unvaccinated populations

Respondent 0463

a. Gaps and underrepresented research areas.
Concerns voiced by parents, physicians, and the scientific community regarding vaccine injury must be addressed with thoughtful, complete, and unbiased investigations. The Vaccine Injury Compensation Program has compensated 1322 cases on the basis of vaccine-induced brain damage, seizure disorder, acute disseminated encephalomyelitis, and encephalopathy. Many of these cases were also diagnosed with autism after suffering the vaccine injury. Since vaccines are universally recommended and mandated in most states for all infants starting at birth, they should be subjected to the highest level of safety standards and research. Vaccine safety issues, including issues of a temporal nature, deserve to be investigated to the fullest extent possible. Therefore, we strongly urge that the two research initiatives to investigate vaccines, which were removed from the strategic plan by the committee in January, be restored.

b. New opportunities.
Build on promising immune system findings in order to more clearly understand the role of immune alterations in ASD. Create animal models based on single exposures, multiple exposures, and multiple pre- and postnatal exposures to substances and viruses that ASD children have been exposed to, reflecting the doses to which they were exposed. Use these animal models to understand genetic susceptibility, pharmacokinetics, mechanisms (including effects at the cellular level and systems level such as GI, immune, and brain), retention and localization of body burden, and response to potential treatments. Evaluate neurodevelopmental and neuroimmunological outcomes, longitudinal structural and functional imaging of the CNS, and tissue pathology, including gene expression and proteomic profiling, in response to the combined early infant immunization schedule (including prenatal exposure to influenza vaccine) in non-human primates.

c. Research priorities.
The above research opportunities should be made a high priority and added to the NIH list of short-term objectives. All research should be prioritized to reflect the urgency of the goal of restoring health to those affected with the disorder, as well as the prevention of new cases.

Respondent 0466

a. Gaps and underrepresented research areas.
Relevant research topics that are underrepresented are studies that identify sensitive populations that is people at risk for adverse reaction to vaccines based on family history. This would include individuals with a family history of auto immune or psychiatric disorders, a sensitivity to allergens, metabolic or mitochondrial disorders and the effect of multiple stressors (vaccines, illness) on these populations. Because the CDC has publically stated on its web site that immune response varies widely and that they have no way of predicting how an individual's immune system will respond to vaccines, this plan should fund clinical studies that examine more thoroughly the immune response of sensitive populations to multiple vaccines. That is individuals with family history of auto-immune disorders, allergen sensitivities and mitochondrial related disorders. Also need to do safety studies that examine the cumulative effects of multiple vaccines on an immature immune system.

b. New opportunities.
More research on sensitive populations and immune response. More research is needed on the relationship between autism, mitochondrial dysfunction and environmental stressors including illness and multiple vaccines. Studies that look at adverse effects of vaccines that can develop over the long term (months later). The CDC's immunization schedule needs to be safety tested. I don't believe this has ever been done in fact there seems to be a complete lack of clinical safety studies on the schedule or, if they exist, they have never been made available to the public.

c. Research priorities.
1. Identying sensitive populations and examining the immune response of multiple vaccines those sensitive populations 2. Effect of multiple vaccines on immatuire immune system (children 0-2 years) and long term effects on the immune system and neuro-development 3. Safety test the CDC immunization schedule that is the cumulative effects of the current vaccine load and how the immune system responds.

Respondent 0472

a. Gaps and underrepresented research areas.
There is the topic of why the very existence of autistic people should be "prevented." Clearly many people believe so, but this is not a fair view conducive to providing autistic people with rights and respect. Autistic people exist and have always existed. Our presence is not in need of "prevention"--but we do need actual services and support. Overly focusing on cause and prevention wastes money which could be used to provide concrete help to autistic people who are already here, as well as those who will exist in the future.

c. Research priorities.
With the federal budget being what it is, I find it amazing that anyone could possibly justify more research into the vaccine causation hypothesis, when such a "link" has already been so thoroughly discredited by reputable scientists. Funding yet another study about this should not be a high priority. Practical research which examines which factors are associated with a higher quality of life for autistic people (as perceived by autistic people) are far more relevant.

Respondent 0473

a. Gaps and underrepresented research areas.
Investigating the role of vaccines in the etilogy of autism. Examine large populations of autistic individuals to identify cohorts with homogeneous patterns (behavioral, medical and/or biological factors) Study role of mitochondrial defects in autism. How could environmental factors trigger dysfunction. Document abnormalities of the immune system. What are these and how can they be treated? What are the common susceptibilities between the nervous system and immune system? Investigate the role of oxidative stress in the etiology of autism, as well as identifying factors that negatively impact reduction-oxidation reaction state (cellular to systems level analyses, as well as animal studies) and developmental course of changes in oxidative burden across various brain regions. Is timing of insult more important than nature of stressor? What role do methylation defects play in the etiology of autism? Is there evidence for a fragile homeostasis in autism?

b. New opportunities.
Investigate the neurotoxicity and immunogenecity of constituent components and additives, the number/combinations of vaccines, and timing of administration on development in animal models and non-human primates. Independent analyses of risk (vs. benefit) as well as comparisons of vaccinated/non-vaccinated populations or cross-national comparisons of different vaccine schedules. Identify susceptibilities and triggers genetic, environmental and developmental (Nature+Nurture+Timing) Is a prenatal insult necessary/sufficient to produce symptoms or are postnatal insults required for disease onset (or are there multiple pathways to symptom expression?) Examine new and different categories of environmental exposures microorganisms, neurotoxicants and other environmental factors; identify common pathways of symptom expression Identify the etiologic neurotoxicants and eliminate them from the child's environment (from prenatal period through childhood)

c. Research priorities.
Caution that continuing to support a "supplier-driven" approach (investigator-initiated) would only yield the "same old-same old" studies and results. Need "customer-driven" approach that would utilize RFA's/set-aside funds to transform the portfolio, including a greater emphasis on treatment trials (development of biomedical interventions for core symptoms of autism) and mechanistic studies. Support for basic science research must be continued, but it should be directed towards investigations that inform us about the cause of autism: 'what we need to know, not what is nice to know'. Public-private partnerships will be essential to ensure that the overall portfolio is balanced and that "venture capital" types of research (i.e. high risk of failure but high impact if successful) can be supported.

Respondent 0476

a. Gaps and underrepresented research areas.
A genetic neurological abnormality has occasionally occurred in humans for at least the last 700 years. Always less than about 2% of population, these people happen to be born with a set of abnormal SPRATS. The dynamic interactions of an individual's SPRA, control the only ways for a mind-body to relate to its environment. Such results in a sometimes-significantly different Thinking System(s), including communication(s). Our experiences indicate that IF the abnormality is more fully investigated, better understood, and applied, prevention would not even be considered. Engineering the condition would. Best applications of the capabilities would.

b. New opportunities.
See section IIIa.

c. Research priorities.
From considerable experience working with adults living on the autism spectrum, we know that many individuals will usually come to behave near normally and perform extremely well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately. 1st Understand the abnormality. 2nd Learn how to use the abnormality by appropriate recognition, encouragement and application of the positive aspects. 3rd MOST IMPORTANT inform harassed parents of the utility of the abnormality AND the best way to handle it.

Respondent 0477

a. Gaps and underrepresented research areas.
Please make low verbal and nonverbal people with autism part of the Strategic plan! It is so important. Thank you very much.

Respondent 0480

a. Gaps and underrepresented research areas.
The IACC Strategic Plan appears to be asking if ASD is genetic or a factor of the environment or both. Currently Florida defines Autism as a developmental disability under the Florida Statutes. Chapter 393.063 Defines "Autism" as a pervasive, neurologically based developmental disability of extended duration which causes severe learning, communication, and behavior disorders with age of onset during infancy or childhood. Individuals with autism exhibit impairment in reciprocal social interaction, impairment in verbal and nonverbal communication and imaginative ability, and a markedly restricted repertoire of activities and interests.

Respondent 0481

a. Gaps and underrepresented research areas.
Everything in this section needs to be considered in light of the bioethics considerations mentioned in Question 1. Prevention of autistic characteristics should not automatically be assumed to be a good thing. All research in this area should include meaningful consultation with the Autistic community regarding our concerns.

b. New opportunities.
I recommend that no new studies in this area be undertaken at present and that funding should be shifted into areas of more pressing importance such as studies of community services and supports, long-term outcome studies, and cognitive research to help improve the education of Autistic students.

c. Research priorities.
No more vaccine studies; they are a waste of taxpayer money and are repetitive of past research showing no association between autism and vaccines. Funding should go toward research that will actually help the existing Autistic population.

Respondent 0484

a. Gaps and underrepresented research areas.
Accentuating the positive and accommodating or remediating the weaknesses, will go a long way in helping individuals with Autism a sense of value and take part in becoming productive citizens of society.

Respondent 0485

a. Gaps and underrepresented research areas.
There needs to be a dramatic shift in research: 90% environmental; 10% genetics. New cases in autism should be prevented by identifying environmental etiology.

c. Research priorities.
Return the vaccinated vs. unvaccinated outcome study to the highest priority for research and funding. Short of doing this, the IACC will continue to be regarded as a politically and not scientifically motivated.

Respondent 0493

a. Gaps and underrepresented research areas.
Vaccinated vs. unvaccinated amount of thimerasol at what ages and severity of ASD pregnant mom don't eat tuna but let us load you up with the flu shot loaded with thimerasol.

Respondent 0494

a. Gaps and underrepresented research areas.
VACCINES!!! I know that all autism is not caused by vaccines. I don't think anyone will argue that genetics play a role in autism. Looking back...I believe my son could have gone either way. He did typical things but did not progress normally. We did not go thru regressions. I truly believe vaccines played a part in my son's autism.

b. New opportunities.
Vaccines & environment.

c. Research priorities.
Vaccines & environment.

Respondent 0499

c. Research priorities.
We commend the Committee for acknowledging the weighty evidence against the proposition that thimerosal-containing vaccines could cause autism. The Committee's position on a connection between MMR vaccine and autism is less clear, and we recommend that the Committee clarify in the Strategic Plan that the evidence against such a connection is strong. The Committee seems to be contemplating a study to compare vaccinated against unvaccinated children. We recommend that the Committee carefully consider the scientific feasibility of carrying out such a study in light of the potential for confounding that is inherent in retrospective research. We believe that federal resources would be put to better use studying hypotheses of autism's etiology for which biological plausibility has been demonstrated.

Respondent 0500

a. Gaps and underrepresented research areas.
More research into environmental effects on sensitive individuals. More research on harmful side effects of vaccines More research on harmful side effects of overuse of antibiotics and other prescription medications. Return vaccinated/unvaccinated studies to priority list.

c. Research priorities.
Prioritize research on vaccines, prescription medications, and environmental triggers.

Respondent 0501

a. Gaps and underrepresented research areas.
Focus on causation implies these people are broken. They're not broken. They're different. My children, and I have three autistic children, are not broken. They're different. Focus on how you can make their lives better, not how you can fix them! Please don't waste this research money on causation.

b. New opportunities.
Research the very likely possibility that autism is a normal human difference. That's why it's a spectrum disorder with some people being mostly "normal" by society's terms.

c. Research priorities.
Causation should be a very, very low priority.

Respondent 0502

b. New opportunities.
I would like more family studies and genetic research, esp. to show that autism has been around forever, goes way back in family histories, is not the end of the world, has not come out of nowhere due to the "environment," etc. Genetic research focus should be educating the population on autism as a natural variation, and not something that needs to be exterminated.

c. Research priorities.
There have been plenty of studies showing that vaccines do not cause autism. I would like to see this issue put at the very, very bottom of any list of priorities. Same thing for the vinyl flooring theory, random "toxins," etc. Would also like more research into the "autism epidemic," and if it really is true that there are more autistic kids now than ever. When I look at charts/graphs of department of education stats, it looks to me like "mental retardation" has gone down while "autism" has gone up. It seems like one diagnosis/label has been substituted for another.

Respondent 0505

a. Gaps and underrepresented research areas.
Vaccine safety has been cynically addressed. This must be thoroughly studied in earnest, including but not limited to observational studies of vaccinated vs. unvaccinated and primate research studies. Viral causes should be explored using oligo microarray chips, CSF from possibly vaccine-injured patients and patients with ongoing problems. Differentiation is key to increasing the signal to noise ratio but has been previously used to rig research to produce a pre-arranged answer. More thorough research grouping children in to groups with comorbid issues is needed.

b. New opportunities.
Vaccine safety has been cynically addressed. This must be thoroughly studied in earnest, including but not limited to observational studies of vaccinated vs. unvaccinated and primate research studies. Viral causes should be explored using olio microarray chips, CSF from possibly vaccine-injured patients and patients with ongoing problems. Differentiation is key to increasing the signal to noise ratio but has been previously used to rig research to produce a pre-arranged answer. More thorough research grouping children in to groups with comorbid issues is needed.

c. Research priorities.
1) Vaccine safety has been cynically addressed. This must be thoroughly studied in earnest, including but not limited to observational studies of vaccinated vs. unvaccinated and primate research studies. 2) Viral causes should be explored using oligo microarray chips, CSF from possibly vaccine-injured patients and patients with ongoing problems. Differentiation is key to increasing the signal to noise ratio but has been previously used to rig research to produce a pre-arranged answer. More thorough research grouping children in to groups with comorbid issues is needed.

Respondent 0506

a. Gaps and underrepresented research areas.
Novel phenotyping strategies that go beyond a description of behavioral symptoms are needed for the identification of biomarkers and biologic profiles for individuals with ASD. The integration of biologic information in phenotype selection algorithms that can be used to identify ideal samples for research trials, may help to guide the development and evaluation of more targeted and effective therapeutics and significantly improve the prediction of a therapeutic response.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
Vaccinations? Baby Food/Formula (additives)? Environment - Nuclear fall out unknown to the public?

b. New opportunities.
Data Sharing, DNA Research Free Screening

c. Research priorities.
Oldest population of those with ASD to youngest.

Respondent 0509

a. Gaps and underrepresented research areas.
In the topics "Exposure assessment -- efficient and accurate measures of key exposures for use in population and clinic based studies" and "Initiate studies on at least five environmental factors" and "Determine the effect of at least five environmental factors", include vaccines as one of the exposures to be assessed.

b. New opportunities.
STUDY VACCINES! Study the immune system. Study digestion. Study metabolic and mitochondrial disorders.

c. Research priorities.
Vaccines should be the number one priority. Thousands of parents have witnessed their children's descent into autism following a round of vaccines. Mercury in the environment is another important subject for study.

Respondent 0510

a. Gaps and underrepresented research areas.
Immunizations and environmental risks.

b. New opportunities.
Immunizations and environmental risks.

c. Research priorities.
Vaccines and environmental risks.

Respondent 0512

a. Gaps and underrepresented research areas.
I think environmental causes should be investigated exhaustively since the autism rates are skyrocketing. Vaccines, their individual components and the cumulative effects should be studied. Also, pesticides and heavy metals should be investigated.

Respondent 0514

a. Gaps and underrepresented research areas.
My child has infant stroke caused by pitocin, toxin coated with immunizations Brain mush. Priority = environmental and biological ischema event prevention. WAAAAAAAAAY UNDER REPRESENTED IN COMMITTEE COMMITMENT! Forget Psychiatric evaluations. We experience this every DANG DAY! This is biologically caused.

b. New opportunities.
Priority = environmental and biological ischema event prevention. WAAAAAAAAAY UNDER REPRESENTED IN COMMITTEE COMMITMENT! Forget Psychiatric evaluations. We experience this every DANG DAY! This is biologically caused. Do the nonvaccinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

c. Research priorities.
Well, we could fire this committee and use the money to research environmental and biological ischemia events. This is biologically caused. Do the nonvaccinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

Respondent 0518

a. Gaps and underrepresented research areas.
The 2 programs referring to vaccine research that were part of the approved draft plan (that were deleted in Jan '09) MUST be restored. 1. Study the effects of vaccines, vaccine components and multiple vaccine administration in autism causation. Gain understanding to which subpopulations are more susceptible to adverse vaccine reactions. (I haven't seen ANY research into safety of multiple vaccine administration--at least in the way the current vaccine schedule is administered) 2. Determine feasibility and design of various health outcome, including autism, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups.

b. New opportunities.
It's time to REALLY seek out what environmental triggers are associated with autism--it's time to move past the elusive "autism" gene.

Respondent 0519

a. Gaps and underrepresented research areas.
remove bias toward prenatal onset of autism and include postnatal onset, regression and postnatal influences. Restoration of vaccine objectives vetted IACC through science workshops and strategic planning workgroups and approved in 12/2008 and removed in 1/2009. Integration of autism specific vaccine safety research objectives identified by NVAC and as they relate to ASD. Correction to misrepresentation of IOM 2004 and inclusion of existing vaccine research supportive of increased investigation inclusive of thimerosal. An independent panel to undertake this research is needed due to acknowledged HHS conflicts of interest.

b. New opportunities.
Funding the National Children's Health study to collect detailed medical records including vaccine information. Quadruple short-term objectives to identify environmental factors from 5 to 20 factors. Increase objectives investigating/identifying biomarkers to 20. Objectives must include US populations relative to environmental factor investigation. Expand objectives on effect of environmental factors on risk for subtypes of ASD to 20 environmental factors. Monitoring of environmental toxicants prenatally and for first 3 years of life. Investigate mercury in all its various forms and its relation to autism.

c. Research priorities.
Remove bias on genetics research and divert monies earmarked for genetic objectives into environmental factors and their genetic interplay. Include breakthroughs and understandings in environmental science to balance perspectives in the plan. Build on existing environmental research.

Respondent 0521

a. Gaps and underrepresented research areas.
examine children with late age regression and the diversity of subtypes

b. New opportunities.
better differentiation at the cell level as well genetic variants

c. Research priorities.
please make research into issues of brain inflammation and the association abnormal CSF levels have to do with autism subtypes..

Respondent 0524

a. Gaps and underrepresented research areas.
We need to look more at genetic factors and the way that the spectrum extends all the way into "normal" society. I object to the very framework of this question--we need to interrogate whether we want to live in a society that is trying to "prevent" all neurological difference. I concede that some neurological differences are very difficult for the subject and those around him/her, but others are not. We need to be precise about exactly what we're trying to "prevent" here, and the moral sacrifices we're willing to make for such prevention.

b. New opportunities.
Look at family trees of those with ASDs. How many have relatives who share a diagnosis or have gone undiagnosed because of shifting DSM standards?

Respondent 0525

a. Gaps and underrepresented research areas.
Research on vaccine injury MUST be fully studied. Where is the study examining vaccinated/unvaccinated children

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Please note that all comments are provided in their original form and in their entirety with the following exceptions: 1) Spelling errors were corrected and abbreviations changed to full length words to facilitate readability and text searching and 2) profane language was redacted. Respondent numbers in the RFI are not sequential due to test cases (technical staff and others submitting dummy data to test the system, which took up a respondent number each time) and unsubmitted responses (did not hit "submit" button, despite automated reminders to do so) that were logged into the system. Also, some respondents did not provide answers to every question or subquestion. Blank responses were not posted. The comments posted reflect the opinions of members of the public who responded to the RFI. These comments are not endorsed by and do not represent the views of the Federal government.

The responses to the IACC RFI are organized by Strategic Plan question. All of the responses to each question and sub question (Parts a, b, and c where applicable) are grouped together to allow the reader to easily review all material submitted in response to each question. When reviewing the responses, it may be helpful to understand that responses were submitted sequentially. Comments such as "previous" or "see above" sometimes refer to parts a or b of a person's response for the same Strategic Plan question, but in other cases refer to parts of a response to an earlier Strategic Plan question. In the case of the latter, the earlier comment referenced can be located by navigating to the Strategic Plan question indicated and then finding the respondent number associated with the comment of interest. Similarly, respondents sometimes referenced readers to previous responses by listing a specific question number (e.g. See IIIc). These materials can be located by navigating to the question listed and locating the respondent number of interest.

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