Responses to the 2010 IACC Request for Information

The comments received in response to the 2010 IACC RFI during the six-week open comment period are posted on this web site. Information about plans to publicly post this information was provided in the RFI (see the "Information Requested" and "How to Submit a Response" sections) and can be viewed here.

Please note that respondent numbers are not sequential due to the fact that some respondents did not provide an answer to each question or sub-question. Some respondents indicated that they wished to have their name and/or affiliation be associated with their response, and in those cases, the information is provided at the top of the response.

Typographical and spelling errors have been corrected and abbreviations lengthened to facilitate searching the document. Every effort was made to avoid altering the meaning of the comments. Responses that referenced an individual respondent's earlier responses (e.g. "See above.") and did not contain additional information were omitted to make this working document more concise. Profane, abusive and/or threatening language, and personally identifiable information have been redacted.

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.

To view the RFI responses, please click on a strategic plan question of your choice:

Introduction
Question 1: When Should I Be Concerned?
Question 2: How Can I Understand What is Happening?
Question 3: What Caused This To Happen and Can This Be Prevented?
Question 4: Which Treatments and Interventions Will Help?
Question 5: Where Can I Turn for Services?
Question 6: What Does the Future Hold, Particularly for Adults?
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
Question 8: Other Information

Strategic Plan: Introduction

Respondent 1

Matthew J. Carey

a. What issues and topics should be added to the introduction?
The introduction uses the oft-cited cost estimate for autism. That estimate found that the majority of the "cost" is for indirect costs in adulthood. This is largely lost wages. Doesn't this suggest that a greater focus should be placed on the adult community? It is highly likely that we have a very large unidentified and underserved adult autistic population.

b. What issues and topics that are currently included should be modified or removed from the introduction?
The discussion of vaccines could be de-emphasized.

Respondent 4

John Best

a. What issues and topics should be added to the introduction?
Scrap everything you have now in favor of telling the truth. Stop trying to baffle us with [profane language redacted]. Take the mercury and aluminum out of vaccines and advise everyone that autism can be cured with chelation therapy. Throw Ari Ne'eman out of the IACC. He's a lying [profane language redacted] who does not have autism and is trying to prevent us from curing our kids.

Respondent 6

Eileen Nicole Simon
conradsimon.org

a. What issues and topics should be added to the introduction?
Crosscutting themes: 1.) The focus of research needs to be the brain, and how all of the many etiologies of autism result in the distinctive characteristics of developmental-language disorder, deficits of attention, and repetitive-stereotyped-motor mannerisms. 2.) Brain systems involved in language development should be identified, not synapses everywhere. Prevention: 1.) Invasive obstetric and neonatal interventions must be considered as causes of the increased prevalence of autism. 2.) Clamping the umbilical cord immediately at birth terminates natural transition from placental to pulmonary respiration, and may lead to ischemic injury of auditory nuclei in the brain stem. Clamping the umbilical cord is dangerous and should be stopped. 3.) Especially following a lapse in respiration at birth, injections of vitamin K and vaccines may be dangerous. These interventions were never adequately tested and should be stopped at least on a trial basis.

Respondent 8

a. What issues and topics should be added to the introduction?
I think this is very clear and it also gave me a better idea of what the IACC is working on.

Respondent 9

Susan Lin
American Occupational Therapy Association

a. What issues and topics should be added to the introduction?
The American Occupational Therapy Association (AOTA)

Respondent 10

Andrea Payne

a. What issues and topics should be added to the introduction?
Information regarding sensory processing and/or sensory integration are imperative to almost everyone on the spectrum. Though there is not currently a medical diagnosis for sensory processing disorder or sensory integration dysfunction, these are VERY common with every child I've met. In my opinion, these are two separate disorders - the ability to take in information correctly, and the ability to use the information effectively; however, in my experience, both types are diagnosed as sensory processing disorder. Many of the repetitive actions as well as the social and communication abilities are a direct effect of the thousands of stimuli everyone feels every second.

b. What issues and topics that are currently included should be modified or removed from the introduction?
While there is a brief mention of sensory impairments, many people including within the education glossary, view these as deaf or blindness. While it's true that there are people on the spectrum who do experience these conditions, for most people on the spectrum the sensory impairments are due to a physiological impairment that causes an inability to withstand the demands of the environment as opposed to a physical inability to see or hear. My son has vision, but cannot always see. My son has hearing, but cannot always listen.

Respondent 11

G. A. Elbek

a. What issues and topics should be added to the introduction?
According to the Combating Autism Act of 2006 (P.L. 109-416), you are to "make available to individuals and their family members, guardians, advocates, or authorized representatives; providers; and other appropriate individuals in the State, comprehensive culturally competent information about State and local resources regarding autism spectrum disorder and other developmental disabilities, risk factors, characteristics, identification,...and evidence based interventions." The U.S. Food and Drug Administration (FDA) confirms that soy products are chemically 1.) estrogenic endocrine disruptors, 2.) poisonous plant, and 3.) contains: toxic phytic acid, essential enzyme inhibitors, and multiple heavy metals. Each and all of these are repeatedly pathologically PROVEN as neurotoxic with greatest risk of the occurrence of brain and body toxicity during fetal, infant and child developmental soy poisonous chemical exposure. Several hundred scientific studies repeatedly confirm that these exact soy phytotoxic effects are proven to damage extensive developmental brain cell systems known to cause: autism, mental retardation, cerebral palsy, seizures, attention deficit hyperactivity disorder (ADHD) and more. According to the Combating Autism Act of 2006 (P.L. 109-416), IACC is required to disclose the soy phytotoxic causation of autism and multiple brain damaging disorders as public information. I will appreciate your reply as to WHEN you expect to allow this established evidence of developmental soy toxicity causation of autism and mental disorders as public information in accordance of the Combating Autism Act of 2006 (P.L. 109-416).

Respondent 14

Kim

a. What issues and topics should be added to the introduction?
The mass overdiagnosis and MISDIAGNOSIS of autism. This is totally out of control. Take Jenny McCarthy, for instance, whose child NEVER had autism, but Landau-Kleffner syndrome. It's time responsible researchers start weeding out the real cases of autism from the misdiagnosed cases or you will never get a clear picture of what autism really is.

Respondent 16

Family Voices-NJ

a. What issues and topics should be added to the introduction?
1.) We agree with the concept of environmental factors examined under prevention but would also include further research into the vaccine controversy, immunological disorders, and gastrointestinal symptoms. 2.) As other parents have chosen not to vaccinate, there is now a cohort which can be studied for comparative purposes without the ethical dilemma of putting children at risk.

Respondent 21

a. What issues and topics should be added to the introduction?
VACCINE SAFETY! Parents should be alerted to the fact that vaccines have not been proven 100 percent safe.

b. What issues and topics that are currently included should be modified or removed from the introduction?
Children should be diagnosed well before 3 years old, that is too late to be waiting around, and pediatricians need to start LISTENING to parents!

Respondent 23

Age of Autism

a. What issues and topics should be added to the introduction?
The IACC reports, "Two decades ago, autism was a little known, uncommon disorder. Today, with prevalence estimates increasing at an alarming pace, autism is emerging as a national health emergency. Autism is now recognized as a group of syndromes denoted as autism spectrum disorder (ASD). The most recent Centers for Disease Control and Prevention (CDC) prevalence estimates of ASD for children are 1 in 110 (CDC, 2009). These estimates, more than tenfold higher than two decades ago, raise several urgent questions: Why has there been such an increase in prevalence? What can be done to reverse this alarming trend? How can we improve the outcomes of people already affected, including youth and adults?" I would like to know why the IACC can refer to autism as an emerging "national health emergency," yet has done little to address it as such. "Emergency" denotes a crisis, yet the closest anyone from the IACC has come to using that word was when Thomas Insel spoke at the National Institutes of Health (NIH) this spring and announced, "We have responded to this as if it's a crisis. We see this as an enormous public health challenge." The word emergency conjures up taking drastic action, yet little in this information outlines specific actions to be taken. Something affecting one percent of children is clearly more than a challenge. When will autism be officially declared a CRISIS? This report said, "Specifically, we need research that deepens our understanding of ASD, including the complex genetic and environmental factors that play a role in its causation," yet not one particular environmental factor was mentioned. When Insel spoke at the Massachusetts Institute of Technology (MIT) last December he made the following comments on the environment: "I said before this isn't just genetics... There have to be environmental factors." "We have barely been able to scratch the surface." "There are something like 80,000 potential toxicants." That was a frightening commentary. How much worse will the autism rate have to get before researchers have a clue where to look? Why is the research money going to endless genetic studies while no one seems to know anything about the triggers in the environment? Most disturbing to me is the statement by the IACC, "With recent reports that autism spectrum disorder (ASD) is becoming increasingly prevalent - now estimated to affect about one percent of children in the United States - efforts to accelerate the research field take on even greater urgency and importance." The IACC refers to "prevalence" a number of times in their report. Prevalence is often used by those who claim there's been no real increase, only better diagnosing and an expanded spectrum. When will the IACC make it clear that the incidence of autism is "increasing at an alarming pace"? [personally identifiable information redacted]

Respondent 24

Ray Gallup

a. What issues and topics should be added to the introduction?
The autoimmune/gastro link and vaccine link to the autism spectrum disorder (ASD) epidemic.

Respondent 25

Maria Durci

a. What issues and topics should be added to the introduction?
The effects of having a family member of autism on families can be great and widespread impacting the family members' physical and mental health, stress levels, social lives, work life, sleep, etc. Many children with autism are bullied, neglected and abused in school and in their community. There is a lack of awareness, understanding and acceptance of persons with autism regardless of their level of functioning.

Respondent 31

American Psychological Association

a. What issues and topics should be added to the introduction?
These comments are being submitted on behalf of the 150,000 members and affiliates of the American Psychological Association (APA). Overall, the Interagency Autism Coordinating Committee (IACC) 2010 Strategic Plan for Autism Spectrum Disorder Research provides a comprehensive and ambitious plan to advance basic and clinical research and improve the translation and dissemination of research to communities in need. We are pleased the plan includes descriptions of etiology, epidemiology, methods of diagnosis and screening, and dissemination. As health disparities and profound differences in the availability of services are still prominent issues, we commend the IACC for focusing on underserved rural and ethnic minority populations. Equally important is the need to increase research with adolescent and adult populations, as individuals across the autism spectrum strive to reach their full potential academically and in the workforce. Given the lack of evidence for many commonly used interventions, we support the increased focus on comparative effectiveness research together with enhanced dissemination of promising interventions to practitioners, caregivers, schools, and families. The plan states that resources should be devoted to research commensurate with the public health need. While we support greater federal investments in ASD research, scientific decision-making must also be responsive to scientific opportunity. Furthermore, the peer review process should be the deciding factor in determining which projects are supported based on their scientific excellence and merit. Given the current and future budget outlook for the National Institutes of Health, a strong investigator-initiated research portfolio is crucial to moving the science forward in basic, translational, health services, and dissemination research. Overall the balance of research goals seems to place more emphasis on developing and testing interventions than on developing tools and measures for early diagnosis and prevention. While this may reflect a more consumer-oriented approach, there is a risk that it may hamper long-term advances in understanding the etiology of the various subsets of ASDs. We would encourage the IACC to keep a long-term approach when balancing the immediate needs of families and individuals affected by ASDs with the current state of scientific opportunities and the capacity of the scientific enterprise and workforce.

Respondent 35

Marc Rosen

b. What issues and topics that are currently included should be modified or removed from the introduction?
Entire introduction needs to be reworded and restructured to no longer "speak" in medical terminology. This is a sociopolitical problem, not a medical one, and should be treated as such.

Respondent 36

Mike Stanton

b. What issues and topics that are currently included should be modified or removed from the introduction?
As a United Kingdom resident, may I offer an alternative perspective on autism to the one you present in your introduction? You suggest that there has been an alarming tenfold increase in prevalence since 1990, from 10 in 10,000 to 110 in 10,000, that constitutes a national health emergency. Yet as far back as 1996, Lorna Wing, writing in the British Medical Journal, offered a tentative estimate of 91 in 10,000 based on epidemiological studies in Britain (Wing & Gould, 1979) and Sweden (Ehlers & Gillberg, 1993) carried out on children born before 1970 and 1985 respectively. Wing suggests that broadening the criteria, increased awareness of ASD, particularly as it affects those without cognitive impairments and an increase in referrals for diagnosis may explain the apparent growth in prevalence. Until recently children in the United Kingdom with developmental delays were not usually referred for specialist diagnosis. Children were allocated to specialist provision on the basis of their IQ. Local education authorities made a virtue out of assessing individual educational need rather than applying labels. The needs of high functioning children in mainstream schools remained unrecognized and unmet. If, as a result, they became disruptive they were treated as maladjusted. In the United States autism has only been an officially notifiable diagnosis within the education system since the early 1990s. It is instructive that while the number of children diagnosed with autism has increased dramatically since 1998 the number of children served by the Individuals with Disabilities Education Act in United States schools has remained between 10 and 11 percent (http://www.autismstreet.org/weblog/?p=217#more-217). This does not rule out the possibility of a real increase but it does suggest that any increase will be far more modest than the tenfold increase that you suggest. It is unlikely that the United States is facing a massive growth of autism amongst young people sufficient to constitute a "national health emergency." The immense costs to society of ASD are often taken to include massive increases in demand for adult services as young people mature. But if there has not been a dramatic increase in numbers it is logical to assume that masses of undiagnosed adults are already amongst us. The first ever study of prevalence amongst adults in the United Kingdom (http://www.ic.nhs.uk/pubs/asdpsychiatricmorbidity07 ) suggested that there are around 1 percent living in the community. Most of them lacked educational qualifications, were single and not in receipt of services. A previous report by the National Autistic Society, "Ignored or Ineligible" (http://www.autism.org.uk/en-gb/about-autism/autism-library/magazines-articles-and-reports/reports/our-reports/ignored-or-ineligible.aspx ) found that most autistic adults, whether high-functioning or low-functioning had needs that were not being met. Whatever the costs of autism, they are not being substantially borne by a society that ignores the reality for autistic adults. The costs are privatized as familial poverty and deprivation. When adults do take up services it is not to meet their needs as autistic individuals. Rather, they become a burden on psychiatric or custodial services because their autistic needs have not been met. The need for an expansion of services for autistic adults need not be an economic burden. Again look to the United Kingdom. An Audit Commission report (http://www.nao.org.uk/publications/0809/autism.aspx ) into services for autistic adults found the following. We explored the possible impacts of providing specialized health, social care and employment support for adults with high-functioning autism. Wider implementation of such services would require additional expenditure, for example an estimated £40 million per year by primary care trusts and local authorities to provide specialized health and social care teams across the whole of England. Evidence from existing specialized services does however indicate that they can improve outcomes for service users, and our model suggests that the costs could over time be outweighed by overall public expenditure savings. A key factor would be the proportion of the local population with high-functioning autism identified by specialized services and given appropriate support, for example to live more independently or to obtain and retain employment. We estimate that if such services identified and supported around four percent or more of the adults with high-functioning autism in their local area, they could become cost-neutral across public spending as a whole over time, as well as resulting in additional earnings and reduced expenses for individuals. Increasing the identification rate further could result in greater financial benefits over time. On a number of key assumptions, for example regarding housing settings and employment rates, some of them based on limited data, our model suggests that a six percent identification rate could lead to potential savings of £38 million per year, and an eight percent rate to savings of £67 million. Further work is needed to quantify the potential costs and benefits more precisely, and to explore in more detail the potential impacts of implementing such services. I would suggest taking a step back from the rhetoric about a burgeoning epidemic with dire economic consequences. Instead you should embrace the benefits that accrue from acknowledging the true scale of ASDs in society. You should prioritize efforts to identify autistic adults across the lifespan and make provision to meet their needs. And, as the National Audit Office report from the United Kingdom shows, doing the right thing by autistic people is both fiscally and morally sound. Do the right thing, America. References Wing, L. (1996). British Medical Journal, 312, 327-328. Wing, L, & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. The Journal of Autism and Developmental Disorders, 9, 11-29. Ehlers, S, & Gillberg, C. (1993). The epidemiology of Asperger syndrome. A total population study. The Journal of Child Psychology and Psychiatry, 34, 1327-1350.

Respondent 38

Audrey Smerbeck

a. What issues and topics should be added to the introduction?
I see no mention of the elevated rates of co-morbid psychiatric conditions, such as anxiety disorders, obsessive-compulsive disorder (OCD), and depression.

b. What issues and topics that are currently included should be modified or removed from the introduction?
I don't like how the rise in prevalence estimates is called "alarming." It might be alarming if there is a true rise in prevalence, but many epidemiological studies have shown how factors other than a true increase in autism rates could be associated with increased estimates, such as diagnostic substitution and greater public awareness. Calling the rise in estimates "alarming" misleadingly suggests that there is a large, real increase. Please be mindful that the autistic phenotype, especially in its milder forms, may have much to contribute to society, most obviously in fields such as computer science. Talk of "prevention" is okay with me, but it should be tempered with an awareness that it would be a detriment to society if the autistic phenotype were to be entirely wiped out.

Respondent 50

Theresa K. Wrangham

a. What issues and topics should be added to the introduction?
The Strategic Plan's Mission and Vision remain without a preventative statement and are instead addressed in crosscutting themes - prevention should be integrated into Mission/Vision Statements.

b. What issues and topics that are currently included should be modified or removed from the introduction?
More of the existing environmental research needs to be cited along with the many citations that already exist for epidemiological and behavioral citations that appear throughout the Strategic Plan.

Respondent 51

Mike Frandsen
coachmike.net

a. What issues and topics should be added to the introduction?
Overall the plan is well written but results will have to be checked against the goals. The word "chemicals" is only seen once in the document and that is in the index. The word "pesticides" is only seen once other than in the index. Given the National Children's Study, the recent understanding that environmental issues play a major role in autism, and the Toxic Chemicals Safety Act of 2010, there should be a greater focus on environmental causes of autism and biomedical treatments. "The spectrum includes people with ASD who are nonverbal and cannot live independently, and others who find gainful employment and live independently. Comment: This is a very offensive statement because it implies that those who are nonverbal cannot live independently, or that there is a correlation between how verbal someone is and how high functioning they are. There are nonverbal people who are extremely intelligent, who communicate through typing or augmentative and alternative communication (AAC) devices. "Additionally, if one views ASD as a biological disorder triggered in genetically susceptible people by environmental factors," Comment: This wording is wishy-washy: "if one views." Say it clearly. "In other cases, the first signs of ASD occur in young children who appear to regress after they seem to have been developing normally." Comment: Again, this is wishy-washy. Saying "appear" and "seem" makes it sound like the first-person parent accounts are not credible. "Others appear to later improve significantly." Comment: Take out the words "appear to." "Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the epidemiological research literature." Comment: Why mention mercury and not the MMR {measles, mumps, and rubella) vaccine? If mercury in vaccines doesn't cause autism, that doesn't mean vaccines don't cause autism. You have to mention the MMR vaccine as well. "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." Comment: This implies that focusing on vaccines takes resources away from much needed treatments, services and supports, and implies that those who focus on vaccines don't want research on treatments, services and supports as much as others do. The statement is misleading. "… children who do not currently possess typical expressive language skills and who engage in significant challenging behavior will grow up to need 24/7 supports and services..." Again, this is assuming that not possessing typical expressive language skills implies that those people are less able than others. In many cases they may be more intelligent than others who have better verbal ability. Take out any other references that state the faulty assumption that the more verbal one is, the higher functioning he or she is because that is not true, and discriminates against those who communicate through typing, for example. Why not ask for comments for this plan only verbally if that is so much more important a way of communication than typing?

Strategic Question 1: When Should I Be Concerned?

Respondent 1

Matthew J. Carey

a. What has been learned about the issues covered in this chapter in the past year?
"When should I be concerned" should include "What are the warning signs for autism in older children and adults, and how do they differ from the signs in infants and toddlers." While we are getting a message out with "know the signs," this still focuses on the youngest autistics. The average age of diagnosis cited in the Strategic Plan is 5. Many children are not diagnosed until later and many are never diagnosed. A recent study by the Autism and Developmental Disabilities Monitoring (ADDM) Network made it clear that a large fraction of children are unidentified before the Network analyzes the data and many more remain unidentified. This is in children aged 8.

Respondent 3

b. What are the remaining gaps in the subject area covered by this chapter?
Children are being diagnosed earlier but there is still a great deal of misdiagnosis happening. Many area professionals will make a diagnosis based on parent interview and very little interaction with the child. Professionals need to be better trained in the diagnostic tools and instruments that would provide a thorough and accurate evaluation process.

Respondent 4

John Best

a. What has been learned about the issues covered in this chapter in the past year?
You [derogatory language redacted] haven't learned anything. Some of us know that the only test worth doing for autism is a hair test for deranged mineral transport. I think you know that too but you're too [profane language redacted] dishonest to admit it.

b. What are the remaining gaps in the subject area covered by this chapter?
Diagnostic tools? What the [profane language redacted] is wrong with you? You don't need any tools to determine that a kid can't talk. When they spend their days spinning around in circles and smearing feces all over the place, it's obvious that they have brain damage. Stop listening to these pseudo-intellectual liars who call themselves behaviorists. They have no clue what they're talking about.

Respondent 5

Gail Elbek
Child Health Advocates

a. What has been learned about the issues covered in this chapter in the past year?
There is absolute evidence that endocrine disruptors (ED) cause developmental neurological disorders including ASD, and are proven to also cause a wide range of physiological and reproductive abnormalities: seizures, immunological, gastrointestinal distress, extensive reproductive adversity, [offensive language redacted], infertility, diabetes, leukemia, cancers. Fetal, infant and child exposure to soy (as Dr. Insel confirmed ED) is past due for IACC review as required by the Combating Autism Act of 2006 (P.L. 109-416), and for immediate inclusion in the Strategic Plan for ASD research. I have submitted extensive scientific documentation to the National Institute of Mental Health (NIMH) during the past year proving developmental neurological soy poisoning of which remains IACC ignored.

b. What are the remaining gaps in the subject area covered by this chapter?
"Soybean, genistein, daidzein" (active endocrine disruptors (ED)) are included on the U.S. Food and Drug Administration's "Poisonous Plant Database" while not included in the IACC's autism investigation based also upon massive scientific evidence proving extensive soy poisoning of developmental body and brain. There remain no WARNING labels of soy ED contamination of fetus caused by maternal soy consumption, and of her infant while breast feeding. Infant ED poisoning from soy formulas, as well as infant/child soy ED food poisoning remains an enormous gap in the IACC's emphasis on "consumer-focused research." Massive evidence of soy causation of ASD and other developmental mental and physical disorders/diseases IS PROMISING RESEARCH that is past due. Throughout the past decades, massive research evidence proving extensive soy developmental poisoning is complete. It remains IACC's core objective to allow the evidence as public information.

Respondent 6

Eileen Nicole Simon
conradsimon.org

b. What are the remaining gaps in the subject area covered by this chapter?
Concern should begin before pregnancy. Are birth control pills healthy? Could these or any other pharmaceutical substances (Tylenol, Prozac, Claritin, etc.) cause the genetic duplication or microdeletion mutations associated with some cases of autistic disorder? During pregnancy no chemical substances should be used. Thalidomide and valproic acid (Depakote) are associated with cases of autism. Autism has also been associated with fetal alcohol syndrome. Relevant citations to the medical literature can be found in PubMed and on my website, conradsimon.org .

Respondent 8

a. What has been learned about the issues covered in this chapter in the past year?
In my opinion the following piece is vital in changing the outcome for children/people on the autistic spectrum. Early intervention is key. I am glad this is included. "Healthcare and other early care and education providers may not have received training in recognizing the early warning signs of ASD. Pediatricians may not have received training on using existing screening tools as well as check-ups recommended by the American Academy of Pediatrics and some caregivers may be unaware of the early warning signs of ASD or where to access services, leading to delays in diagnosis." I am unsure of how I would word this but because the Diagnostic and Statistical Manual, 5th Edition (DSM-5) Autism Workgroup has identified criteria that they feel will be more accurate, the possibility of change to the autism spectrum category is great. What subtypes/detailed criteria/DSM would you use? "Detailed criteria for specific ASD subtypes in order to better describe the variations in characteristics and severity and study how these variations relate to underlying pathology, intervention strategies, and outcomes." I am unsure if I would include this at this time. Under research opportunities I think it is important to include sibling testing, including but not limited to twins, and the difference between brothers and sisters.

Respondent 10

Andrea Payne

b. What are the remaining gaps in the subject area covered by this chapter?
All disorders on the spectrum have a bucket of characteristics and presentations. The multiple factors (genetics, environment, early intervention, etc.) are variables in a very complex algebra equation. What is there in one child today, might not be there tomorrow or even in an hour. When determining standard methods of diagnosing any spectrum disorder, there should be consideration given to a type of a sometimes-always-never rating scale. Further determination of the types of environments these behaviors occur in will also shed light on the so-called severity of the disorder. In regards to the trajectories: my son's characteristics have been present since birth; there was a loss of functional communication around age 18 months; there have been multiple periods of regression dating back even to infancy and toddler times; beginning school put a spotlight on many symptoms that previously had been controlled by our interventions. When researching the 'trajectory,' it should be considered that many children have multiple trajectories and they are all impacted greatly by external stress (like the CRCT) or surgeries) and internal stress (worrying about the CRCT or the impact on his body of the stress and surgeries). It should also be considered that using early intervention for other medical reasons as well as the knowledge of some parents to prevent or to control these symptoms, sometimes masks the severity of the autistic characteristics and leads to a lack of diagnosis that when it's finally made you ask yourself "How did THEY ALL miss this?"

Respondent 16

Family Voices-NJ

b. What are the remaining gaps in the subject area covered by this chapter?
1.) We would like to see the "detailed criteria for specific ASD subtypes...underlying pathology" in line with forthcoming Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) in 2013 which may redefine pervasive developmental disorders. 2.) We would strongly support research on tools for diverse populations, ethical considerations in screening, and barriers to screening in minority populations. However, we do not feel that more research needs to be done on "valid and reliable ASD screening instruments," except as they apply to underserved populations or those with a dual diagnosis. In general, we support the use of the tools developed by the American Academy of Pediatricians (AAP) in their national medical home webinar, April 20, 2009, "Developmental Surveillance, Screening, and Diagnosis" at www.medicalhomeinfo.org/training/archivescall3.html (IACC Note: URL is not valid.). 3.) We do not agree with the new objective to allocate $2 million for three studies on identifying the reasons for health disparities because much data already exists and funding could be used in a more efficient manner to help eliminate the health disparities that exist given the information we already have and directly engaging populations that face health disparities in concrete and decision-making roles.

Respondent 20

a. What has been learned about the issues covered in this chapter in the past year?
A screening program should be put into place which allows for measurement of glutathione levels in infants. Those with low or altered glutathione levels are likely at risk for regressive autism.

Respondent 21

Respondent 22

Aimee Doyle

a. What has been learned about the issues covered in this chapter in the past year?
Studies have been done that show that children with autism have a specific urinary porphyrin profile. This was true for my son when we had his urinary porphyrins analyzed. Other studies have shown that children with autism have clinical, biochemical, and neuropathological evidence of oxidative stress and mitochondrial disorder. Finally, there have been studies that show that children with autism have "gut issues." This was certainly true for my son, now 20 years old, who had the whole range of "gut issues" from about 18 months onward -- fussy appetite, delayed toileting, constipation, diarrhea, and vomiting at various times. None of these medical problems engendered any concern from our doctors -- we were told "that's just autism."

b. What are the remaining gaps in the subject area covered by this chapter?
I would like to see far less emphasis on genetic research. My son was diagnosed 16 years ago, at age 4. I've been watching the gene-chasing for over 15 years. All that we've learned has been that the predisposition to autism is likely the result of multiple genes, or possibly multiple mutations, variants, etc. This has cost tens of millions of dollars and has not helped one single child or adult. We can't even treat single gene disorders effectively, so I don't see that this research money is well spent. I would rather see research into the medical and biochemical issues in children with autism -- research far more likely to yield treatment and cure.

Respondent 24

Ray Gallup

b. What are the remaining gaps in the subject area covered by this chapter?
The autoimmune/gastro link and vaccine link to the ASD epidemic.

Respondent 27

a. What has been learned about the issues covered in this chapter in the past year?
The research on this topic is active.

b. What are the remaining gaps in the subject area covered by this chapter?
Too much emphasis on diagnosis.

Respondent 28

J. Fenech

b. What are the remaining gaps in the subject area covered by this chapter?
Diagnosis should also take data on each child's immunization history; history of prescription medications used (especially antifungals and steroid use); also history of any other environmental factors in the child's life (pesticides, what area does the child live in, etc.)

Respondent 31

American Psychological Association

b. What are the remaining gaps in the subject area covered by this chapter?
The plan recognizes the benefits of early intervention and the commensurate importance of developing valid, reliable, and easy-to-administer measures of ASD. Indeed, this is an area of research need, but the plan appears to place more emphasis on interventions than on early identification or prevention. Specifically, we would encourage the IACC to include the issue of complex and difficult differential diagnosis. A number of mental disorders, such as attention deficit hyperactivity disorder, obsessive-compulsive disorder, and social phobia, have considerable phenotypic overlap with ASD, making accurate diagnosis quite difficult. Measures are needed that aid accurate differentiation of these conditions. Moreover, practitioners should be accustomed to considering ASD as a possible diagnosis. Tools and training to assist them in differential diagnosis are needed. We commend the IACC for prioritizing the development of more effective diagnostic tools for underserved populations. While the median age of diagnosis is earlier than it was 20 years ago, there continue to be racial and ethnic disparities in terms of the typical age at which ASD is identified and diagnosed. Given the benefits of early intervention, it is imperative that clinicians and scientists take steps to reach underserved populations, especially families in rural areas and those of racial and ethnic minority groups who tend to have a later median age of diagnosis. In the long-term objectives, the IACC seeks to identify behavioral and biological markers that could accurately identify, before age 2, one or more subtypes of children at risk for developing ASD. Some specific behavioral markers that could also be listed include: 1.) reaction to novelty in infants; and 2.) object play, motor planning, and eye contact in toddlers and preschoolers. One subset of behaviors that was not mentioned is sensory related behaviors that are commonly used in screening and diagnosis. Further research linking sensory issues and behaviors and anxiety should be examined further.

Respondent 35

Marc Rosen

b. What are the remaining gaps in the subject area covered by this chapter?
Failure to include definitive statement that there is no biological test for any ASD.

Respondent 39

Ann-Mari Pierotti
American Speech-Language-Hearing Association

b. What are the remaining gaps in the subject area covered by this chapter?
We appreciate the addition of new objectives related to early screening and the connection between early diagnosis and intervention outcomes. We continue to urge you to include research on the accuracy of broadband screeners. Because of the challenge of identifying very young children with ASD, there is currently very limited research on the accuracy of broadband screeners to identify young children at risk for ASD. Autism-specific screeners use parent report and/or interactive observational measures. Screeners with high sensitivity and specificity that identify early signs of behavioral, cognitive, and communication impairments (e.g., those sensitive to identifying nonverbal signals, lack of interest in faces, and lack of joint attention) are critical to accurate and early diagnosis. We suggest the following research priorities: 1.) Support research designed to assess the sensitivity and specificity of existing assessment screeners/tools to improve the accuracy of early identification of individuals with ASD. 2.) Support research to develop sensitive, valid and reliable outcome measures for the ASD population: a.) Measures of social communication, behavior, and conceptual learning are especially needed for preschool and school-aged children. b.) Measures designed to examine an individual's engagement in social and community activities (i.e., "participation" as defined by the International Classification of Functioning, Disability and Health (ICF)) across the developmental stages are especially needed to track progress from early childhood through adulthood in the ASD population. 3.) Support research designed to assess the efficacy of behavioral treatment approaches to determine which intervention(s) yield clinically significant improvements in speech, language, and social communication. a.) Research designed to identify which interventions are most beneficial for which subgroups of individuals with ASD (and at what point in their development that intervention should be employed) would greatly advance evidence-based approaches to treatment. American Speech-Language Hearing Association (ASHA) would strongly encourage a focus on the behavioral research specifically in the realm of effectiveness of speech and language treatment.

Respondent 43

Michael Framson

a. What has been learned about the issues covered in this chapter in the past year?
The Coalition for Sensible Action For Ending Mercury-Induced Neurological Disorders (SafeMinds) speaks for me more than anything the IACC has done or indicates they will do. Maybe if you hear the comments often enough you will listen. You are letting generations of children down. Several recent studies have identified clinical findings in children with ASD that have the potential to be useful as biomarkers for both risk and disease. Such findings include a specific urinary metabolic phenotype in children with autism compared to unaffected siblings and age-matched controls indicating perturbations in sulfur and amino acid metabolism and possibly abnormalities in gut microflora (Yap, 2010). There have also been several studies that document clinical, biochemical, and neuropathological evidence of oxidative stress and mitochondrial dysfunction (James, 2009; Sajdel-Sulkowski, 2009; Shoffner, 2009; Weissman, 2008) along with immune system abnormalities (Li, 2009; Enstrom, 2009; Goines, 2010; Wills, 2009;). Such findings may be useful as both potential biomarkers for diagnosis and for monitoring therapeutic interventions.

b. What are the remaining gaps in the subject area covered by this chapter?
Let me be clear, what this means is: FUND THIS RESEARCH AS IF CHILDREN'S HEALTH AND LIVES DEPENDED ON IT. It is imperative that such research findings be urgently replicated through the issuance of requests for applications (RFAs) in an effort to fast-track critical research findings. If these associations are validated then these findings should be immediately translated into screening tools in an effort identify those at risk for the development of an ASD. In addition, an initiative to develop effective therapeutic strategies and treatment protocols should be added to the short-term objectives in an effort to prevent progression of the disorder.

Respondent 45

a. What has been learned about the issues covered in this chapter in the past year?
We have an increased awareness of a spectrum of onset from fully congenital through regression around age 3, to flu-onset autism.

b. What are the remaining gaps in the subject area covered by this chapter?
As we increase our diagnostic precision, some causes of autistic symptoms are reclassified away from the largely idiopathic label of autism.

Respondent 47

Duke Crestfield

a. What has been learned about the issues covered in this chapter in the past year?
Iris response time and degree measurements provide a biometric measure of ASD. If this is as good an indicator in young children as it is in older children and adults, it could provide a simple test that any ophthalmologist can perform.

b. What are the remaining gaps in the subject area covered by this chapter?
Switch to 'variant' instead of 'abnormal'. There's growing evidence that ASD people with impairments are part of a functional variant population, and that many of the impairments are culturally derived.

Respondent 54

Rebecca Estepp
SafeMinds

a. What has been learned about the issues covered in this chapter in the past year?
Recent clinical findings identified potential biomarkers for risk, disease, early detection, or treatment effectiveness. Findings include: a urinary metabolic phenotype indicating perturbations in sulfur and amino acid metabolism and possible gut microflora abnormalities (Yap, 2010); evidence of oxidative stress and mitochondrial dysfunction (James, 2009; Weissman, 2008; Shoffner, 2009; Sajdel-Sulkowski; 2009); and immune system abnormalities (Li, 2009; Wills, 2009; Enstrom, 2009; Goines, 2010). Such findings may be useful as both potential biomarkers for diagnosis and for monitoring therapeutic interventions.

b. What are the remaining gaps in the subject area covered by this chapter?
Biomarker findings must be urgently replicated through Requests for Applications (RFAs) for fast tracking. If these immune and metabolic biomarker associations are validated, they should be immediately translated into screening tools to identify those at risk for ASD. An initiative to develop effective therapeutic strategies and treatment protocols should be added to the short term objectives in an effort to prevent progression of the disorder.

Strategic Plan Question 2: How Can I Understand What is Happening?

Respondent 1

Matthew J. Carey

a. What issues and topics should be added to the introduction?
"Launch three studies that target the underlying biological mechanisms of co-occurring conditions with autism including seizures/epilepsy, sleep disorders and familial autoimmune disorders by 2012." I applaud the IACC for adding this goal. I would suggest that epilepsy in unquestionably linked with autism and much research with multiple studies should focus upon the link and understanding the subgroups of autistics with epilepsy. One question might involve whether the medications routinely used for epilepsy might react differently in autistics than in those without an ASD.

Respondent 2

K. MacDonald

b. What are the remaining gaps in the subject area covered by this chapter?
Where are the studies involving the gut-brain interaction? Where is the research looking at how various family histories of autoimmune disorders play into ASD (asthma, eczema, diabetes, etc.). Where are the studies for environmental triggers, especially the childhood vaccine program (i.e., fully vaccinated vs. never vaccinated, altered schedule and/or numbers of vaccines). How can you even pretend to try to answer this question if you are too afraid to look in the most obvious places for the answers? There are many gaps, as far as "what is happening to a full 1% of our children."

Respondent 3

b. What are the remaining gaps in the subject area covered by this chapter?
I think we have only scratched the surface of understanding in this area, and much more research needs to be done. Specifically the metabolic and immune system characteristics and co-occurring conditions need further understanding. The subgroups of people with ASD are very interesting when comparing the vast differences in individuals with the same diagnosis.

Respondent 4

John Best

a. What has been learned about the issues covered in this chapter in the past year?
There is only one cause of ASD: mercury. Take all the rest of your [profane language redacted] theories and shove them [profane language redacted]. You can't fool all of us with this nonsense so you might as well cut the [profane language redacted] and start telling the truth. If you don't tell the truth, those of us who know it will continue to expose you for the dishonest [profane language redacted] that you are. Sooner or later, the majority of the general public will realize that you [profane language redacted] are lying to them and they will probably [threatening language redacted].

b. What are the remaining gaps in the subject area covered by this chapter?
You [profane language redacted] have been lying to us for a long time now. Are you [derogatory language redacted] enough to think that you can get away with this forever?

Respondent 5

Gail Elbek
Child Health Advocates

a. What has been learned about the issues covered in this chapter in the past year?
"...Much of the current science suggests that the behavioral features of ASD result from atypical brain structure, wiring or connections...found differences in density of white and gray matter...associated seizures...disruptions of the immune system...gene mutations...axon impairment…damage to neurotransmitter systems...gender differences...involved in ASD." THE CAUSE OF THESE CAN BE SCIENTIFICALLY EXPLAINED IN DETAIL...

b. What are the remaining gaps in the subject area covered by this chapter?
IACC GAP: Endocrine disruptors (ED) reprogram expression of genes without mutating deoxyribonucleic acid (DNA) as shown in the case of autism. ED cause greatest risk during prenatal and early postnatal development. ED alter, mimic, block the body's natural hormones. Even at low doses ED can disrupt the body's delicate endocrine system that leads to disease: physiological and neurological...brain signaling fails to occur thus causing the failure to respond. As an established endocrine disruptor, SOY is repeatedly proven in scientific detail to damage multiple neurotransmitter systems proven to cause: autism, mental retardation, cerebral palsy, seizures, stuttering, depression, attention deficit hyperactivity disorder (ADHD), and more. Developmental soy neurological poisoning is also proven to cause: damage to multiple brain structures, neuronal atrophy, depressed brain-derived neurotrophic factor (BDNF), depressed calcium-binding proteins, lost protection against neurodegenerative diseases, depressed cortical neurons, impaired hippocampal dentate gyrus, depressed estrogen receptor neurons, depressed hippocampal neuron axonal outgrowth, damaged estrogen receptor messengers, damaged embryonic neurons and glial cells that support and protect neurons, inhibited RET important for the survival of neuron systems involved in brain development and function. Soy poisoning is also proven to damage the thymus, and cause hypothyroidism to then cause immune system deficiency and adverse neurological effects. Soy phytic acid and multiple heavy metals block essential mineral absorption also necessary for body and brain development. Soy estrogenic ED are known to encourage greater risk to males, explaining the 4 to 1 autism ratio. It is past due that as an "Aspirational Goal" the IACC review existing massive evidence proving extensive neurological soy-damaging effects proven to cause autism and several other mental (and physical) developmental disorders. As the marketing and consumption of soy increased in the United States so has autism and multiple severe and irreversible developmental diseases. This is not coincidence, but soy ED poisoning is the cause! Very low costs for the IACC to review published studies and question exposure history of soy contamination.

Respondent 6

Eileen Nicole Simon
conradsimon.org

a. What has been learned about the issues covered in this chapter in the past year?
METABOLOMICS (see PubMed) may be more important than genomic (gene-to-behavior) research. Metabolism is not uniform from person to person. Metabolic variants are probably the norm. How unusual metabolites may affect the brain should be investigated, especially how normally non-harmful metabolites in combination with other factors that are also not injurious to most people. Phenylketonuria (PKU) is a genetic disorder associated with autism, and results from a defective liver enzyme. Phenylpyruvic acid is a toxic abnormal metabolite produced by the defective enzyme in the liver, and this abnormal metabolite clearly affects the brain. Injury from phenylpyruvic acid is probably similar to that caused by alcohol intoxication, valproic acid, and other toxic drugs, and should be investigated in research with laboratory animals.

b. What are the remaining gaps in the subject area covered by this chapter?
Look for a "final common pathway" in the brain that might disrupt language development. Autism is associated with: 1.) TUBEROUS SCLEROSIS and tubers in the temporal lobes, the auditory receptive-area endpoint of the auditory system of the brain; 2.) NEUROFIBROMATOSIS and Schwannoma tumors of the auditory system; 3.) FETAL ALCOHOL SYNDROME from early in gestation leads to major deformities (hamartomas) of the brain and disorganized development of synapse connections; 4.) ALCOHOL exposure late in gestation has been shown to disrupt aerobic metabolism in the auditory system (Vingan, Dow-Edwards, & Riley, 1986); 5.) THALIDOMIDE early in gestation results in major malformations; 6.) The effects of thalidomide and VALPROIC ACID late in gestation should be investigated by the deoxyglucose method as Vingan, et al. (1986) did for alcohol. Reference Vingan, R.D., Dow-Edwards, M.L., & Riley, E.P. (1986). Cerebral metabolic alterations in rats following prenatal alcohol exposure: A deoxyglucose study. Alcoholism, Clinical and Experimental Research, 10(1), 22-26.

Respondent 8

a. What has been learned about the issues covered in this chapter in the past year?
"Research on females with ASD to better characterize clinical, biological and protective features" is so needed. As a mother of both a son and a daughter on the spectrum, I have watched my son receive services throughout his lifetime, that include early intervention, preschool services, an individualized education plan (IEP), and Office of Mental Retardation and Developmental Disabilities (OMRDD) services, while my daughter displays many of the same behaviors, in some cases more severe (i.e., tantruming) and receives very little (i.e., occupational therapy (OT) and speech therapy in the past and no IEP). "Another understudied arena of ASD research is gender differences. Many studies of autism preferentially enroll males, which, due to a 4:1 increased prevalence, are easier to recruit. Without additional information about the biological features of ASD in females, it remains unclear whether the course of ASD is similar and whether currently used interventions are appropriate for females." This made me so happy, so important!!!!!!

Respondent 10

Andrea Payne

b. What are the remaining gaps in the subject area covered by this chapter?
It is very difficult to find information about these areas. I am currently struggling to learn about this as well as to determine the medical persons I need to involve to correctly identify the way my son's body works, especially during periods of stress. Overall, due to the many controversies surrounding autism, saying "autism" in a physician's office is like dropping a flaming "A" into the middle of the room - entire buildings get evacuated!

Respondent 11

G.A. Elbek

b. What are the remaining gaps in the subject area covered by this chapter?
Fetal, infant, and child exposure to soy phytotoxic endocrine disruptors are repeatedly proven to damage multiple most fragile developmental brain systems known to cause a number of brain disorders to include autism. Soy is also proven to cause extensive gastrointestinal damage reported in children with autism. Boys are proven to have greater sensitivity for soy estrogenic endocrine disruptor damage, explaining also the increase of autism in males.

Respondent 13

Rebecca Kotter

b. What are the remaining gaps in the subject area covered by this chapter?
Please devote some resources to investigating the possible dysfunction of mirror neurons in autism. It is possible that functional imaging could become an important tool in early identification of individuals with autism. In addition, functional imaging could play a role in monitoring the success of particular intervention strategies.

Respondent 14

Kim

a. What has been learned about the issues covered in this chapter in the past year?
How some autistics with seizure disorder may benefit, ironically, from "stimulants like Wellbutrin or Ritalin at LOW doses to encourage frontal lobe activity that may be hindered and causing outbursts of behaviors."

Respondent 16

Family Voices-NJ

b. What are the remaining gaps in the subject area covered by this chapter?
None - we support the goal, and short-/long-term objectives

Respondent 19

a. What has been learned about the issues covered in this chapter in the past year?
There has been some research that indicates Lyme disease, certain retroviruses (XMRV) and vaccine adjuvants (aluminum, mercury from thimerosal) create biological mechanisms for the regressive autism we commonly see today.

b. What are the remaining gaps in the subject area covered by this chapter?
We need to thoroughly explore the connection between these biological factors and Lyme disease, xenotropic murine leukemia virus-related virus (XMRV), and vaccine adjuvants by testing with animal models to see if these could be triggers for regressive autism.

Respondent 20

a. What has been learned about the issues covered in this chapter in the past year?
The pathobiology of autism likely involves a perturbation of the antioxidant system mediated by glutathione. There are multiple inputs to this pathology but it appears to be a chronic condition acquired in the infant/toddler period where the gastrointestinal (GI) tract becomes colonized with a yeast which produces the sulfur containig fungal toxin, gliotoxin. Gliotoxin binds to glutathione, essentially removing large quantities of this vital antioxidant from the circulating pool. This disrupts the crucial metal metabolizing metallothionein system, needed to detoxify metals, particularly in the brain. The triggering event is the administration of acetaminophen, aka Tylenol, to the toddler in the perivaccination period. Acetaminophen reduces any remaining glutathione causing metal intoxication in the child and likely causing neuronal cell death of crucial brain cells at a critical time of neurodevelopment. A screening diagnostic tool would measure glutathione in the infant. Such a test already exists, called the erythrocyte glutathione level.

Respondent 21

b. What are the remaining gaps in the subject area covered by this chapter?
You need to include vaccines as a cause of autism!

Respondent 22

Aimee Doyle

a. What has been learned about the issues covered in this chapter in the past year?
I'm not sure what we've learned about the biology of autism. Seems that every article I read covers some new genetic "breakthrough."

b. What are the remaining gaps in the subject area covered by this chapter?
I want to see significant research on regression. My son developed seizures at 18 months. He developed repetition behaviors. He also regressed and lost language, skills, smiling. His entire development stalled. I would like to see detailed analyses of the medical records of children who regress, so we can figure out what triggered the regression. I would also like to see extensive medical testing during the time of regression -- brain scans, physical exams, laboratory analyses. I would also like to see more research into what happens biologically in adolescence. As an adolescent my son developed self-injurious and aggressive behaviors (which he did not have as a child). He hit his leg so many times it was covered with bruises and all the hair fell off. He would yell at the top of his lungs for hours on end, often in the middle of the night. He developed a severe anxiety disorder. He would hit others. We had no idea what was happening to him and neither did any medical doctor or psychiatrist we consulted. My son is not alone -- many adolescents develop problematic behaviors during this time.

Respondent 23

Age of Autism

a. What has been learned about the issues covered in this chapter in the past year?
Why has the IACC never called for a specific study on the children who regressed? In 2008, Dr. Bernadine Healy, former head of the National Institutes of Health, was on CBS News (http://www.cbsnews.com/stories/2008/05/12/cbsnews_investigates/main4086809.shtml ) calling for research on the children who became autistic after receiving certain vaccines.

b. What are the remaining gaps in the subject area covered by this chapter?
I would like to know why the IACC can refer to autism as an emerging "national health emergency," at the same - When will autism be officially declared a CRISIS? This report said, "Specifically, we need research that deepens our understanding of ASD, including the complex genetic and environmental factors that play a role in its causation," yet not one particular environmental factor was mentioned. When Insel spoke at MIT last December he made the following comments on the environment: "I said before this isn't just genetics... There have to be environmental factors." "We have barely been able to scratch the surface." "There are something like 80,000 potential toxicants." That was a frightening commentary. How much worse will the autism rate have to get before researchers have a clue where to look? Why is the research money going to endless genetic studies while no one seems to know anything about the triggers in the environment? Time it has done little to address it as an emergency.

Respondent 24

Ray Gallup

b. What are the remaining gaps in the subject area covered by this chapter?
The autoimmune/gastro link and vaccine link to the ASD epidemic.

Respondent 27

a. What has been learned about the issues covered in this chapter in the past year?
the importance of epigenetics/environmental contribution

b. What are the remaining gaps in the subject area covered by this chapter?
1.) the role of metabolic/mitochondrial problems, testing, detection and treatment of them; 2.) the role of transporters of elements toxic and nontoxic of +2 oxidation state (including the EAAT, the ABC- Pg glycoprotein-) and the amino acids transporters; 3.) the role of certain polymorphisms in the management of xenobiotics in general in ASD, related to the cycle of glutathione conjugation (coenzymes and cofactors) and phase I and phase II in the liver in autistic people--in this sense from food additives to pesticides/organophosphorates/polychlorinated biphenyls (PCBs) exposures to antibiotics, at chronic/acute low dose such as the exposure from breathing air, food and water. Role of the thymus in ASD; 4.) the role of nutritional deficiencies in terms of vitamins, amino acids and minerals--mainly essential elements; 5.) the axis hypothalmic-pituitary-adrenal (HPA) in autism. Precocious puberty in ASD, testing and adequate treatment; 6.) the role of gastrointestinal (GI) conditions (enzyme deficiencies, organic dysfunctions, reflux, food intolerances), immune abnormalities (hyper-answers--autoimmunity--and hypo-answers--immune depression--to viruses/bacteria/xenobiotics including all the exposures) and endocrinologic abnormalities in the physiology of the autistic brain. The identification of subgroups considering the concomitant medical problems to the diagnosis of ASD. The role of the gut-immune system-brain axis signaling systems (neuropeptides, growth factors, etc.) and inflammation in ASD and the correlation with genetics and proteomics/metabolism. Please note that my emphasis here is in the view of the concomitant medical problem as a consequence of the interaction of genetics/metabolism plus environment, not as "Causes of ASD" per se. Impact in the development of autistic brain from childhood to adulthood of undetected concomitant medical conditions. Role of epigenetic. Role of stress. Role of epilepsy/seizures. Role of undetected pain in aggression in ASD. Research in detection of GI and neurological conditions related to pain in ASD. Role of the combination of concomitant medical problems in physical symptoms and cognition in ASD. 7.) The combined impact of medical pediatrics management in the GI/immune system of autistic children (from antibiotics to vaccines--overall schedule and overall composition--PLUS chronic exposure to xenobiotics from food, water and air (heavy metals/Al, PCBs, polycyclic aromatic hydrocarbons (PAHs), pesticides, organophosphates) and allergic reactions PLUS common bacterial/viral childhood conditions NOT possible to prevent--such as otitis, pharyngitis, laryngitis, colds, etc.) vs. non-autistic children. The possibility of molecular mimicry in the management of xenobiotics and vaccines as a concomitant medical problem to the ASD diagnosis. The possibility of ribonucleic acid (RNA) viral mutation in vivo and exchange of RNA material in persistent infections due to abnormal immune answers (from wild and non-wild origin) in ASD. Multiple chemical sensitivities in ASD. The importance of a new approach to study the efficiency of nutritional approaches to ASD, considering carefully the anecdotic experience on the topic and the need of the concomitant treatment of the concomitant medical problems to achieve useful data about outcomes. 8.) The development of more specific and high technology techniques to the detection of evasive/hidden or tricky abnormalities in the detection of immune answers/immune abnormalities/proteomics in autistic people. The effect/impact of chronic low doses of xenobiotics of all sources as endocrinological, gastrointestinal and immune disruptors in autistic vs. non-autistic children. Adequate testing in ASD to detect these disruptions. 9.) The impact of the overall health status--physical and psychological--in neurocognition and testing of learning in ASD. Developmental changes in ASD related to biochemistry/brain structure/and cognition. Checking before and after a proper medical treatment based on metabolism/biochemistry treatment plus educational of the differences--if any--in the skills and abilities, strengths and weaknesses, in time. Research to discriminate between placebo effect and natural maturation vs. true effect of medical treatment of concomitant medical conditions in ASD.

Respondent 28

J. Fenech

a. What has been learned about the issues covered in this chapter in the past year?
More than enough money has been spent strictly on the genetic aspect of ASD. Enough already. Let's start looking at what is happening to the child before it is born. Does the mother have a history of illness where she is constantly on antifungals, other drugs, etc.? What drugs were given in utero (absolutely including any vaccinations)? Was the mother given any catch-up immunizations while in the hospital (shedding from this and also transmission through breast milk)? IS THERE A TEST TO SEE HOW STRONG THE IMMUNE SYSTEM OF THE BABY IS WHEN IT IS BORN?

b. What are the remaining gaps in the subject area covered by this chapter?
My daughter is now 17 years old. We have done just about every therapy that is known to man to help her. After years and years of applied behavior analysis (ABA), speech therapy, etc., I finally convinced my pediatrician to go to an autism conference (after eight years of begging). He came home from the conference and immediately started my daughter on methylcobalamin with glutathione. Within days, my child's language was coming out faster than we could take in (age 10). Prior to this, it was like pulling teeth to get two or three words from her. So, what happened to her body's production of gluatathione? Did the hepatitis B shot damage her production of it?? So, if her detoxification system didn't work properly from the time of her hepatitis B shot (at two weeks old?), what did this do to her developing brain and neurological system? I want to know and you should too.

Respondent 39

Ann-Mari Pierotti
American Speech-Language-Hearing Association

b. What are the remaining gaps in the subject area covered by this chapter?
Supporting the development of research that addresses the efficacy of existing interventions aimed at mitigating behavioral and medical challenges should be a top priority. Specifically, research designed to contrast highly structured treatment (i.e., ABA) with other approaches aimed at improving social contextually- based communication and the comprehension and production of spoken language, as well as examining the change in outcomes associated with the frequency, intensity and duration of treatment.

Respondent 40

b. What are the remaining gaps in the subject area covered by this chapter?
The link between vaccines and autism needs to be explored much more thoroughly. The neurotoxins in vaccines (e.g. aluminum, mercury) cannot be good for a developing infant. The fact that so many ASD kids have allergies suggests vaccines may be causing an immune or autoimmune reaction.

Respondent 43

Michael Framson

a. What has been learned about the issues covered in this chapter in the past year?
The "What we know" section alludes to the possibility of a biological basis of ASD but goes on to say that little evidence exists for such a basis outside of a transient pattern of brain growth. Multiple studies have been published the past 2 years documenting metabolic, immune, and neurological abnormalities that offer additional support for biological underpinnings of the disorder. Zecavati and Spence (2009) review neurometabolic disorders and dysfunction found in ASD. Enstrom (2009) identifies altered innate immunity capable of initiating and perpetuating autoimmune responses. Li (2009) documents an elevated immune response in the brains of autistic patients. Wills (2009) reports on detection of autoantibodies to neural cells of the cerebellum in the plasma of subjects with autism spectrum disorders. Sajdel-Sulkowska (2009)reports an increase in cerebellar neurotrophin-3 and oxidative stress markers in autistic cerebella. James (2009) continues to expand her finding of oxidative stress, documenting cellular and mitochondrial glutathione redox imbalance in lymphoblastoid cells derived from children with autism. Palmeieri (2010) provides additional support for mitochondrial dysfunction in autism along with Shoffner (2009), who links fever and mitochondrial dysfunction with the development of ASD. Weissman (2008) argues that defective mitochondrial oxidative phosphorylation is an additional pathogenetic basis for a subset of individuals with autism. This section of the plan is in need of updates in an effort to focus research initiatives more specifically on these new novel findings since they also may provide insight into the development of effective therapeutic strategies and possible etiology of the disorder.

b. What are the remaining gaps in the subject area covered by this chapter?
THIS IS SO CRITICAL IACC. SAFE MINDS EXPRESSES THESE POINTS CLEARLY. Although there was an objective added last year that focuses on the prospective characterization of children with reported regression, it is imperative that this objective include intensive evaluations of infants and toddlers during the reported timeframe of regression. These evaluations must include detailed historical data, extensive physical exams, brain imaging, and laboratory parameters that elucidate the function of a wide range of metabolic, immunologic, and toxicologic parameters in an effort to understand the mechanisms and responsible agents driving these regressions. In addition, many parents have opted to bank cord blood. A secondary research opportunity is to compare cord-blood parameters to those obtained during regression in order to identify what has changed in the child over time, including genetic analysis of both samples in an effort to identify epigenetic alterations, de novo mutations, copy number variation (CNV) aberrations, and potential environmental exposures. Existing databases of phenotype characteristics (behaviors and core deficits) should be expanded to include a list of cooccurring medical differences including CNS, sensory/perceptual, metabolic, immunologic, and gastrointestinal variations found in people with ASD. Attention to metabolic alterations should address detoxification pathways, cell signaling, methylation, apoptosis, growth factors, and porphyrin profiles. There should be a determination of how these characteristics change over time. Rigorous and independent studies on autism prevalence rates over time and across geographies are needed to determine the extent of the apparent autism epidemic, the role of changes in diagnostic practices, the extent to which environmental factors play a causal role in any increase, and what future services might be needed, given the true increase in autism rates.

Respondent 45

a. What has been learned about the issues covered in this chapter in the past year?
This chapter fails to go into depth on the possible environmental triggers, such as bisphenol A (BPA), flu vaccines, and xenotropic murine leukemia virus-related virus (XMRV).

b. What are the remaining gaps in the subject area covered by this chapter?
Potential triggers of ASD under investigation: estrogen mimickers such as BPA, XMRV, ultrasound, etc.

Respondent 47

Duke Crestfield

a. What has been learned about the issues covered in this chapter in the past year?
Finer and different MNS characteristics in ASD people.

b. What are the remaining gaps in the subject area covered by this chapter?
There are lots of simple mirror neuron system (MNS) tests that can be done, but little systematic work. Indications are that ASD people have much stronger MNS with other ASD people than with neurotypicals (NT's), and that the MNS can be developed through increased oxytocin activation, primarily through touch.

Respondent 50

Theresa K. Wrangham

b. What are the remaining gaps in the subject area covered by this chapter?
Research goals in the plan continue to focus on structural differences instead of asking what causes the structural differences. The plan remains heavy in genetic focus. Genetics is funded well privately and federal funds would be better used in the underfunded environmental sciences of this plan, particularly given that genetic studies only indicate to date that a very small percentage of ASD is likely to be strictly genetic. Please use these funds to explore environmental triggers.

Respondent 52

b. What are the remaining gaps in the subject area covered by this chapter?
Aspirational Goal, Research Opportunities. Current: "Research on unique strengths and abilities..." CONSIDER: More specifically, what skills and exceptionalities are seen in a significant majority of autistic spectrum individuals (e.g., types of memory, sense of location/direction, etc.) -- not savant or temporary skills but commonly present and sustained over time. (My non-savant autistic son, and others with autism, can show no preference for letters/simple sentences appearing up or down/inverted; can locate a destination after one visit and much time has elapsed, and after appearing to not pay much attention to where he was going in the first place -- What is this remarkable internal compass about ??, etc.) From this study, we may (1) gain insight into distinct and global brain functioning, and (2) develop programs of intervention -- learning and vocational -- to capitalize on these assets. CONSIDER: While effort is targeting markers and phenomena specific to autism, we may also be able to gain insight and consider intervention that has been successful with other conditions with overlapping symptomology. For example, Alzheimer's, learning disability, attention deficit disorder (ADD), etc. LUMINOSITY is a software program developed as a brain exercise for Alzheimer patients. It has since been used also with Traumatic Brain Injury, etc.

Respondent 54

Rebecca Estepp
SafeMinds

a. What has been learned about the issues covered in this chapter in the past year?
Update "What we know" section for new evidence supporting a biological basis for ASD - Zecavati & Spence (2009) - neurometabolic dysfunction; Enstrom (2009) - altered innate immunity; Li (2009) - elevated immune response in brain; Wills (2009) - autoantibodies to cerebellum neurons; Sajdel- Sulkowska (2009) - increase in cerebellar neurotrophin-3/oxidative stress markers; James (2009) - glutathione redox imbalance; Palmeieri (2010), Weissman (2008), Shoffner (2010) - mitochondrial dysfunction.

b. What are the remaining gaps in the subject area covered by this chapter?
(a) Expand objective F to include intensive evaluations during regression: medical history; physical exams; brain imaging; laboratory metabolic, immunologic, and toxicologic parameters to understand mechanisms and responsible agents; comparison of cord blood with regression blood samples to identify time changes, including genetic/epigenetic and toxicologic. (b) Expand phenotype databases to include medical differences and time changes, e.g. central nervous system (CNS), sensory/perceptual, metabolic (including detox pathways, cell signaling, methylation, apoptosis, growth factors, porphyrin profiles), immunologic, and GI variations. (c) Rigorous studies on prevalence over time and across geographies: determine extent of epidemic, role of diagnostic changes/environment, future services needed given real increase.

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

Respondent 1

Matthew J. Carey

Respondent 2

K. MacDonald

Respondent 3

Respondent 4

John Best

Respondent 5

Gail Elbek
Child Health Advocates

Respondent 6

Eileen Nicole Simon
conradsimon.org

Respondent 8

Respondent 10

Andrea Payne

Respondent 11

G.A. Elbek

Respondent 13

Rebecca Kotter

Respondent 14

Kim

Respondent 16

Family Voices-NJ

b. What are the remaining gaps in the subject area covered by this chapter?
None - we support the goal, and short-/long-term objectives

Respondent 19

Respondent 20

Respondent 21

b. What are the remaining gaps in the subject area covered by this chapter?
You need to include vaccines as a cause of autism!

Respondent 22

Aimee Doyle

Respondent 23

Age of Autism

Respondent 24

Ray Gallup

b. What are the remaining gaps in the subject area covered by this chapter?
The autoimmune/gastro link and vaccine link to the ASD epidemic.

Respondent 27

a. What has been learned about the issues covered in this chapter in the past year?
the importance of epigenetics/environmental contribution

Respondent 28

J. Fenech

Respondent 39

Ann-Mari Pierotti
American Speech-Language-Hearing Association

Respondent 40

Respondent 43

Michael Framson

Respondent 45

b. What are the remaining gaps in the subject area covered by this chapter?
Potential triggers of ASD under investigation: estrogen mimickers such as BPA, XMRV, ultrasound, etc.

Respondent 47

Duke Crestfield

a. What has been learned about the issues covered in this chapter in the past year?
Finer and different MNS characteristics in ASD people.

Respondent 50

Theresa K. Wrangham

Respondent 52

Respondent 54

Rebecca Estepp
SafeMinds

Strategic Plan Question 4: Which Treatments and Interventions Will Help?

Respondent 2

K. MacDonald

a. What has been learned about the issues covered in this chapter in the past year?
The IACC seems to have extremely few committee members who seem to understand the biomedical treatments that parents are having so much success with. Why are there no Defeat Autism Now (DAN) doctors on this committee?! This makes no sense not to involve the most successful practitioners, especially when the public isn't given equal representation on the committee.

b. What are the remaining gaps in the subject area covered by this chapter?
Mainstream doctors and biomedical specialists (i.e., Defeat Autism Now (DAN) doctors) need to be in better communication and share ideas openly. Mainstream doctors currently seem to have little to offer other than some behavioral programs (often not available, depending on where you live) or off-label use of medications that usually don't work. On the other hand, many parents are getting great results with treatments like: dietary interventions, supplements, methyl B-12 shots (or nasal sprays), hyperbaric oxygen therapy (HBOT), and chelation, etc. As a parent who went the "mainstream route" for seven years before turning to the more alternative approach of the DAN doctors, I can say there is no comparison. I got absolutely NOWHERE with the mainstream approach, yet had almost miraculous results with the DAN approach. As a healthcare professional myself, I have to wonder what has happened to our medical integrity? Why are we not only avoiding researching treatments that seem to be helping many, but actively attacking those brave doctors who are truly trying to help? It makes no sense!

Respondent 3

b. What are the remaining gaps in the subject area covered by this chapter?
There is so little good research regarding effective treatments and interventions. Studies need to be done that have large numbers of participants receiving equal number of hours of intervention, each a different type, so that we can compare "apples to apples." Also, more unbiased studies regarding dietary, medication and biomedical treatments need to be pursued.

Respondent 4

John Best

a. What has been learned about the issues covered in this chapter in the past year?
The only treatment that can cure autism is chelation therapy with alpha-lipoic acid. [offensive language redacted] learn that you have been lying about this and they [threatening language redacted]. That's what you [profane language redacted] deserve.

Respondent 5

Gail Elbek
Child Health Advocates

a. What has been learned about the issues covered in this chapter in the past year?
Research into developmental soy endocrine-disruptor causation of autism and mental illness remains IACC-disregarded.

b. What are the remaining gaps in the subject area covered by this chapter?
The most urgently important gap remaining in IACC investigative research of ASD are the hundreds of published studies all confirming soy-endocrine-disruptor causation of extensive developmental neurological as well as physiological irreversible damage to fetus, infants, and children exposed.

Respondent 6

Eileen Nicole Simon
conradsimon.org

a. What has been learned about the issues covered in this chapter in the past year?
Developmental language disorder is the core handicap of children with autism.

b. What are the remaining gaps in the subject area covered by this chapter?
Teach children to hear syllabic stress and boundaries between syllables and words. Engage researchers with interests in hearing disorders and development of novel hearing aids.

Respondent 7

a. What has been learned about the issues covered in this chapter in the past year?
Further evidence has accumulated that reinforces the involvement of immune-related factors in ASD. It is clear that immune-related molecules are upregulated in the brain and cerebral spinal fluid (CSF) in autism, and that there are abnormalities in the peripheral immune system as well. These findings should be further validated in detail in human studies as well as in animal models with face and construct validity, such as the maternal infection model. There are also many indications of gastrointestinal (GI) problems in ASD and these require further validation as well as exploration in relevant animal models.

Respondent 8

a. What has been learned about the issues covered in this chapter in the past year?
Looks good :)

Respondent 9

Susan Lin
American Occupational Therapy Association

a. What has been learned about the issues covered in this chapter in the past year?
The American Occupational Therapy Association (AOTA) strongly supports the aspirational goal pertaining to Question 4 to develop interventions that are effective for reducing both core and associated symptoms, for building adaptive skills, and for maximizing quality of life and health for people with an ASD. Occupational therapy practitioners work with individuals and their families to improve adaptive skills and daily functioning (e.g., basic and instrumental activities of daily living), reduce problem behaviors, and increase their quality of life and health via performance of meaningful occupations, adhering to healthy routines and habits, and participating in communities. The AOTA recently created an Occupational Therapy Research Agenda, which identifies intervention research as one of the most important priorities (Rogers, et al., in press). Therefore, we praise the IACC for recognizing the need to "test [the] safety and efficacy of at least five widely used interventions that have not been rigorously studied for use in ASD," including sensory integration. We recommend replacing the term sensory integration with the phrase occupational therapy using a sensory integrative approach for two reasons. First, occupational therapists use a variety of theories and approaches to evaluate and treat an individual within the contexts of family and varied environments. Occupational therapy's ultimate goal is to promote a client's ability to perform daily occupations and meaningfully participate in society. Modifying the environment because of the individual's sensory needs or sensitivities and teaching individuals how to perform activities of daily living (e.g., brushing teeth, getting lunch in the cafeteria) are some of the important interventions that individuals with an ASD need in order to perform their daily occupations as independently as possible but may not be considered specific sensory integration therapy. While it is important to study sensory integration as both a theory and approach to intervention, we advocate for a slightly broader perspective so that other occupational therapy interventions could be considered as well. Secondly, the term "sensory integration" can be misinterpreted; some understand it as a neuroscience term and still others interpret it as any intervention utilizing a sensory component, as in sensory-motor stimulation. Sensory integration is a practice theory about brain-behavior relationships, with principles stemming from neuroscience and occupational therapy (Lane & Schaaf, 2010). Therefore, when reviewing studies and proposals about sensory integration, it is critical to have clear parameters and definitions about the sensory integration protocol. For example, several occupational therapists have developed a fidelity measure to determine if the intervention meets the essential tenets of sensory integration therapy, as defined by Dr. Jean Ayres (Parham, et al., in press; Parham, et al., 2007). The AOTA also strongly supports IACC's call for research to "improve functioning and quality of life for people with an ASD across the lifespan, including older children, adolescents, and adults with an ASD." Parents want their children to participate with their peers, so understanding and addressing behaviors that promote participation in social events or settings is a family priority. One of the outcomes of occupational therapy using a sensory integrative approach is that parents better understand their children's behaviors. Occupational therapists can help identify why children will not wear certain clothing or why they act out in public settings, and collaborate with parents to identify potential solutions. Being able to take their children to grocery stores, restaurants, shows, or sporting events could decrease some parental stress and increase community integration. Finally, the AOTA is pleased to see that family functioning is emphasized as an outcome in "two multisite randomized controlled trials of comprehensive early intervention." Since occupational therapy is identified as a primary service provider in early intervention programs under Part C of the Individuals with Disabilities Education Act (IDEA), we recognize the importance of providing support, education, resources to families. In order to improve outcomes of young children with an ASD, family context, culture, and their environments must be considered.

Respondent 10

Andrea Payne

a. What has been learned about the issues covered in this chapter in the past year?
Our son is in occupational therapy (OT) for sensory integration, speech therapy, sensory motor social skills groups and music therapy. We also use behavior modification and applied behavior analysis (ABA) practices. We also use various medications for the coexisting conditions. We use a variety of communication forms. Music therapy focuses on the skills from other therapies, but has shown to be effective with our son in ways that traditional therapies were not. Music is processed in different portions of the brain than language, and therefore accesses pathways that we previously could not connect - even with his language skills.

b. What are the remaining gaps in the subject area covered by this chapter?
It's a puzzle. It's about finding the areas that affect the child the most and ways to provide interventions that will teach them the life skills that are lacking. It's about putting together the pieces and understanding that the picture of our children will never be seamless. It's about understanding that in seven years he's going to want to work a job and drive a car and he's not going to have any chance of doing that if at 9 he can't maintain eye contact or look both ways before dashing into the street after the shiny penny across the way. These kids do not get this by natural occurrence like most of us - they have to be given it. It's imperative. It's life defining.

Respondent 13

Rebecca Kotter

b. What are the remaining gaps in the subject area covered by this chapter?
Please investigate approaches beyond traditional applied behavior analysis (ABA). ABA methods can be very helpful in teaching routines, such as teeth-brushing and shoe-tying, but did little to aid in teaching our child genuine empathy and social awareness. In fact, I believe ABA teaching methods contributed to our son's rigidity and need for completely static structure, since ABA strategies are often very predictable and static. Please investigate other strategies, particularly interventions that can be carried out by family members rather than relying on professionals. What day-to-day interventions can families use to help their child with ASD? Also, please investigate the use of sign language rather than picture communication. We found picture communication to lack in spontaneity (child must find the set of pictures, flip through the book, locate picture, bring picture...it hardly seemed worth it to communicate). Sign language has been very spontaneous and user-friendly for us. Yet we constantly run into speech-language pathologists and other professionals who discourage the use of signing because the signing audience is smaller. Professionals should help families find interventions that work for them rather than using their personal bias to guide treatment.

Respondent 14

Kim

a. What has been learned about the issues covered in this chapter in the past year?
Temporary use of mild to moderate skin shock therapy (much like a transcutaneous electrical nerve stimulation (TENS) unit type deal) should be reconsidered as an ADJUNCT to behavioral/medical therapies dealing with severe self-injury among autistics. Too many self-abusive autistics are suffering from ineffective therapies that repeatedly fail to address serious self-injury. Temporary, well supervised skin shock therapies actually teach self-control and are often less harmful than Geodon, Haldol, Thorazine, in long run.... Of course low doses of pharmaceuticals plus acute EMERGENCY use of skin shock therapy is another option and should be considered. We have come too far now to ignore that skin shock therapy does indeed help some autistics who CAN'T stop hitting themselves, and it's a good emergency intervention for when all other therapies fail. It could be prescribed when needed just like injections of Seroquel are given when a person has an extreme meltdown. Ideally, the skin shock therapy should be used as a medically prescribed emergency rescue assistive technology device for extreme self-injury likely to cause immediate bodily injury if NOT quickly stopped. It would be marketed as if a TENS unit, in the way that the public needs to UNDERSTAND that when the autistic person get so worked up, they simply can't stop mutilating themselves, so this is an emergency use of medical device to protect them. Education should assuage the naysayers who are largely ignorant of this rare population. Skin shock therapy should also be developed so it can be discreetly worn as a bracelet or watch like device, so that when it's needed to deliver the therapeutic skin shock therapy during emergency meltdowns that can't be otherwise stopped with less aversive means, you can use it. Keep in mind sometimes you can't even get an emergency intramuscular (IM) medication into a 6'2" autistic man who weighs 240 lbs and who is slamming his head into concrete. It takes five people to control him. When skin shock therapy is used, it brings fast control, so the medications can then be administered.

Respondent 15

George

a. What has been learned about the issues covered in this chapter in the past year?
Nothing new, to be honest. You have not mentioned any new treatment models that may be looked at but report old applied behavior analyst (ABA) studies that may not be appropriate for all age groups (0-3 years old). If everyone is going to get hung up on evidence-based practice (EBP) we never may see other types of treatment. Look, if ABA was so successful we would see it being used to successfully in treatment in other diseases/disorders (reading, writing, stuttering, etc.). You all seem to be going in a circular fashion which keeps going back to ABA. Look ABA is more powerful when combined with a program like the Developmental, Individual Difference, Relationship-based DIR/Floortime Model. The most powerful variable to the treatment is "pairing" therapist with child. As a wonderful psychologist once told me, "the right chemistry between therapist and patient" and the treatment approach may be secondary. Removing the art from treatment may come back and haunt us in the future. As far as "the golden rule" in ABA research being used, I don't recall? As with human immunodeficiency virus (HIV), I think we are better off using a cocktail approach in treatment. Please let's be real - 20-40 hours of ABA therapy for 0-3 year-olds. Pull this in a little, please guys. Most of the children I work with can not handle it and some of these ABA teachers are lacking experience and credentials. Now we are going to use aides to ABA teachers, GOOD LORD!

b. What are the remaining gaps in the subject area covered by this chapter?
You are not looking at other approaches that may deserve mentioning?

Respondent 16

Family Voices-NJ

a. What has been learned about the issues covered in this chapter in the past year?
We also highly recommend expanding on the National Research Council's "Educating Children with Autism" at www.nap.edu which was clinically researched interventions proven effective in the treatment of autism thus far. Due to the high use of alternative interventions, we would recommend the use of the National Institutes of Health's research of the National Center for Complementary and Alternative Medicine found at http://nccam.nih.gov.

b. What are the remaining gaps in the subject area covered by this chapter?
1.) We agree that some adaptive technologies are helpful but also suggest the use of "total communication" using sign language and speech simultaneously prior to using facilitated communication. While we agree that applied behavior analysis (ABA) has been researched as proven effective, we are concerned with the lack of standardization for qualifications of behaviorists, and believe a more eclectic approach (e.g., combined ABA/Developmental, Individual-Difference, Relationship-Based model (DIR/Floortime) or Miller Method) as most effective. We would suggest the addition of social skills as an intervention to be researched because this will aid in successful transition to adult life. We are deeply concerned that challenging behaviors often result in the inappropriate use of aversive interventions, restraints, and seclusion which are harmful to children with autism. We urge the IACC to address this. Further, positive behavior supports must be utilized as the preventive and intervention method of choice. We recognize also that no medication has been U.S. Food and Drug Administration (FDA) approved for autism but again caution against "chemical restraint" and recommend that any prescriptions, if needed, be used in conjunction with other therapy. 2.) We strongly support treatment of coexisting medical and especially psychiatric conditions, as there remains a "de-linking" of services between the developmental disabilities and mental health communities despite the high occurrence.

Respondent 17

Roseann Schaaf
Thomas Jefferson University

a. What has been learned about the issues covered in this chapter in the past year?
We now know that occupational therapy using a sensory integration approach is among the most requested services by parents of children with autism spectrum disorders (Mandell, et al., 2005; Green, et al., 2006), and although the preliminary data on this intervention is promising (Schaaf, 2010, as cited in Volkmar, et al., 2010), there is a paucity of large-scale randomized controlled trials.

b. What are the remaining gaps in the subject area covered by this chapter?
Intervention that incorporates the principles of sensory integration is one of the most requested services by parents of children with autism spectrum disorders (Mandell, et al., 2005; Green, et al., 2006). National Institutes of Health (NIH) funded studies are needed to establish the safety and efficacy of the sensory integration approach for individuals with autism spectrum disorders. Occupational therapy scientists need to be included in this work as this intervention is firmly seated within the domain of occupational therapy and utilizes professional standards established by the occupational therapy profession. This will assure that the intervention is in keeping with the central principles of the approach, that the manualized protocol is utilized (Schaaf, Blanche, Mailloux, et al., 2010), and that the tools developed to test its fidelity are utilized accurately (Parham, et al., 2010). Although several grants have been submitted to the NIH over the past seven years to study this intervention, they are often scrutinized harshly by individuals bias against this approach, and thus, there has been limited funding to study this highly utilized intervention. We have a responsibility to support this research to provide guidance to parents and educators about its efficacy and effectiveness.

Respondent 18

Holly Masclans

a. What has been learned about the issues covered in this chapter in the past year?
This area is an embarrassment to the American people. Nothing the committee has uncovered has helped my children or any autistic children I know. The committee should be ashamed of itself.

b. What are the remaining gaps in the subject area covered by this chapter?
What can be done to repair the amygdala? What kind of therapy works? Cognitive behavior therapy? Acupuncture? Medication? What therapy do veterans with brain damage receive? How about stroke patients? Will any of these therapies help our children? We have done many biomedical interventions with our children. Such as chelation, diet, hyperbaric oxygen therapy (HBOT) and they have definitely improved their overall health. However there is the brain damage!!! Do my children need more HBOT? What educational therapies work? Neurofeedback, Tomatis method, interactive metronome therapy, Fast ForWord, Brain Gym, neurodevelopmental exercises. None of these therapies are covered by insurance. Unless their effectiveness can be documented they are unaffordable for most families with children suffering from autism. Is the therapy that author of "Look Me in the Eye," John Elder Robinson, receives at the TMS lab at Boston's Beth Israel Deaconess Medical Center being investigated for younger children?

Respondent 20

a. What has been learned about the issues covered in this chapter in the past year?
Treatments and Interventions would revolve around prevention of the depletion of glutathione, and failing that, interventions that would tend to raise glutathione levels. Obviously, elimination of the use of acetaminophen in infants would be an immediate first step. Additionally, use of antifungal medications and use of probiotics to restore the healthy gastrointestinal (GI) tract flora would likely be efficacious. Multiple methods of restoring glutathione would include administration of the glutathione precursor, N-acetylcysteine. Glutathione is poorly absorbed by the GI tract so it might be administered topically, or intravenously or intramuscular infusion. B vitamins are also required for the transformation of methionine into cysteine and then into glutathione.

Respondent 22

Aimee Doyle

a. What has been learned about the issues covered in this chapter in the past year?
There seems to be incredible hostility to all forms of treatment except applied behavior analysis. The Autism Research Institute (ARI) has a database of over 20,000 parent-rated treatments, yet the most promising among these (methyl B-12, chelation, special diets, food allergy treatment, and melatonin) have not been extensively studied.

b. What are the remaining gaps in the subject area covered by this chapter?
I would like to see extensive research on kids who have recovered. What treatments did they use? Why were certain treatments effective? Why were others not effective? Why do some kids recover and others do not? There seems to be almost no interest among researchers with respect to recovered kids. I believe kids who have recovered are documented on the Autism Research Institute (ARI) website. I would also like to see research into treatment for older kids, adolescents, and adults. Once my son hit puberty, the only treatments we were ever offered were drugs. Most drugs just made him worse. It seems that after the "early intervention" window has closed, the medical and educational communities just give up on autistic kids.

Respondent 23

Age of Autism

b. What are the remaining gaps in the subject area covered by this chapter?
I personally know dozens and dozens of top doctors providing biomedical treatment for autistic children. As a teacher, I work with autistic children. One severely affected 16 year old girl I see several times a week was completely nonverbal until she underwent chelation at age 7. Within two weeks she began to talk for the first time! There are thousands of parents who have seen remarkable improvement and even recovery from autism with therapies like diet, supplements, chelation, and hyperbaric oxygen treatment. How hard would it be to study the children who've been helped by these treatments? The big questions for me concern the relevance of the IACC. How long will the IACC have nothing to report to Congress? How long will the IACC fund studies that give us no real answers? How long will IACC ignore the children?

Respondent 24

Ray Gallup

b. What are the remaining gaps in the subject area covered by this chapter?
The autoimmune/gastro link and vaccine link to the ASD epidemic. Figures from the U.S. Department of Education as well as from the U.S. Social Security Administration (SSA) show there is an epidemic and I am tracking that. [personally identifiable information redacted]

Respondent 25

Maria Durci

b. What are the remaining gaps in the subject area covered by this chapter?
The efficacy of a gluten-free, casein-free diet, allergen avoidance, and supplementation has many anecdotal reports touting their effectiveness. It is time for well-run studies to put the science behind this. At the least follow families already committed to pursuing these interventions and monitor the changes that occur in their children physically, educationally, & behaviorally including changes in sensory issues, speech and language, gut health, aggression, allergic symptoms, nutritional levels, neurology, etc. Thousands of parents can't be making this up. Look carefully at recovered children and recovering children, please.

Respondent 26

b. What are the remaining gaps in the subject area covered by this chapter?
I recently learned that there are barely any studies being done on adults with ASDs. There is very little grant money available to study this population. We are the guinea pigs in this area. My Asperger's son is 21 years old. He has made tremendous progress in the last three years. But without evidence-based interventions to call upon, oftentimes we feel like we are flying blind. The focus needs to shift from all studies focusing on the deficit areas to ones that look at what supports work throughout the lifespan. And I assume those supports will change as the person with ASD ages. I don't need a cure. What my son needs are supports and programs that work and will allow him to live a full self-determined life.

Respondent 27

b. What are the remaining gaps in the subject area covered by this chapter?
1.) The gluten-free, casein-free, soy-free diet as an approach to treat gluten/casein intolerances as neurological illness of immunological basis. Research in detection beyond celiac disease or milk allergy in ASD. Checking of toxic (lead/cadmium/aluminum/mercury/arsenic/others) and essential elements (zinc/calcium/magnesium/others) in blood, hair, urine, fecal stool during a gluten-free, casein-free, soy-free diet without selenium or amino acids supplementation to detect imbalances in transport systems of toxic/essential elements with time on diet. The best procedure to follow if toxic elements in abnormal concentrations are demonstrated to be present. Research in adequate testing and treatment for ASD; 2.) the role of metabolic/mitochondrial/gastrointestinal (GI)/immune support and the changes that metabolic/mitochondrial/GI/immune treatment brings to the health of autistic children with metabolic/mitochondrial/GI/immune problems properly tested and diagnosed; 3.) the importance of dietary, antifungal, antibacterial and GI/nutritional support treatment (combined) in the well-being of autistic children when proper combination testing demonstrates the need of; 4.) the importance of antiviral treatment when the testing demonstrates concomitant medical problems with viruses (herpes, ribonucleic acid (RNA) viruses, etc.). Analysis of the role of streptococcus infection in autistic biochemistry and physiology. Lyme disease and ASD. Impact of neurotrophic infectious agents in ASD. Analysis of the better treatment for these concomitant medical conditions in autistic people individually in these cases; 5.) the development of a screening protocol (involving the GI, immune, liver/kidney/glutathione status and xenobiotics management, nutritional/metabolic status, dietary) in parallel to the ASD diagnosis with the Diagnostic Statistical Manual, 4th Edition (DSM-IV) involving the testing that can detect the concomitant medical conditions to ASD that today can remain undetected/undiagnosed/untreated because of the current paradigm. Please note that my emphasis is in the Treatment of the concomitant medical problems and Not in a "Cure for ASD" per se but with the goal of life quality for autistic children/teens/adults. Impact in the short-/long-term in the well-being/language/communication/independence of autistic people of the proper treatment-or not--of these conditions. Impact of the proper medical treatment of concomitant medical problems plus a rational educational approach based on the development of strengths and supporting weaknesses related to individual. Opinion of autistic people of all ages--as much as possible--treated with these approaches on the topic; 6.) the role of common medication used in ASD (attention-deficit hyperactivity disorder (ADHD) medication, neuroleptics, antipsychotic, etc.) in the well-being of autistic people of all ages. Impact in the long time range for children and in the well-being of teens and adults in the spectrum. Problems with secondary effects. Opinion of the families of autistic children/teens/adults in the perception of well-being of autistic children/teens/adults, behaviors and communication. Opinion of autistic adults/teens on all these topics.

Respondent 28

J. Fenech

a. What has been learned about the issues covered in this chapter in the past year?
Alternative medicine is a misnomer. Our bodies are supposed to be able to heal themselves. More drugs is not the answer. We need to stop the mantra of "better living through chemistry." Western medicine needs to look at EVERYTHING and open their minds to other medicine that has been around a heckuvalot longer. Just because it is not a drug does not mean it should be ignored. Better living through chemistry? Is that all that western medicine has become - better chemists? Look at the state of our children's health. Not a good track record for western medicine.

Respondent 31

American Psychological Association

b. What are the remaining gaps in the subject area covered by this chapter?
We support the IACC's plan to support clinical research that will focus on effectiveness research and also comparison trials. While randomized controlled trials are needed to evaluate the effectiveness of medication in controlling challenging behavior, it is critical that this type of inquiry also address the effectiveness of common interventions such as positive behavior support (PBS), separately and in combination with medications. PBS has been demonstrated effective in preventing and addressing challenging behavior yet there is a dearth of research examining its use with and without psychopharmacological interventions. Many interventions for ASD are comprehensive, time-intensive, and extremely costly. Service costs and cost-benefit analyses should be a more standard component of evaluation studies. While there is some recognition that many children with ASD rely on education-based services, there is no mention of studying school-based strategies specifically. Many families lack resources, both financial and time, to secure private services. Moreover, parents often must spend considerable time advocating, researching, and supporting their child with ASD alongside maintaining the household and caring for other children, leaving little time for doctors' visits, extracurricular activities, etc. In short, there are children who must rely on what they can get during the school day.

Respondent 32

b. What are the remaining gaps in the subject area covered by this chapter?
I would request that further research be conducted in the area of teaching nonverbal or minimally verbal autistics to read and write/type as a way to communicate. There has been a focus on the usage of sign language or Picture Exchange Communication System (PECS) for this group with varying degrees of success. There is some anecdotal evidence that some low-functioning children with autism are hyperlexic. For some nonverbal individuals the use of the keyboard has been the means of allowing them to communicate and participate in educational settings when prior to their usage of keyboard skills they were thought to have low IQs. We need more research and an understanding of how the ability to read and write at normal levels coexists with an inability to communicate verbally and we need a sound educational method developed to teach reading and writing/typing to these nonverbal individuals. Many of these individuals are assumed to not have the ability to learn these skills since verbal development typically precedes the ability to read and write. These assumptions may be incorrect and the teaching of reading and writing/typing should be considered as an alternative form of communication for these individuals. Of particular interest we would like the educational strategies outlined in the manual for the Rapid Prompting Method to be thoroughly analyzed. These strategies are targeted toward the population who seem to make limited progress with applied behavior analysis (ABA).

Respondent 35

Marc Rosen

b. What are the remaining gaps in the subject area covered by this chapter?
Insufficient funding of self-determination services.

Respondent 38

Audrey Smerbeck

b. What are the remaining gaps in the subject area covered by this chapter?
"Methods of measuring changes in ASD core symptoms" is listed as one of the goals. This is important, but it may also be important to measure changes in important quality-of-life related domains that may or may not depend on altering the ASD itself, such as depression or employment. I see nothing listed about eliciting the treatment-related values or beliefs of adolescents and adults with ASD. Before pursuing a plan to validate or debunk a treatment, its acceptability to the target population should be studied. Examine the efficacy of traditional one-to-one psychotherapy for adolescents and adults with ASD, both for improving core symptoms and for improving co-morbid problems. Examine the degree to which community counselors have knowledge of ASDs and effective treatment practices.

Respondent 39

Ann-Mari Pierotti
American Speech-Language-Hearing Association

b. What are the remaining gaps in the subject area covered by this chapter?
Evidence-based comparative effectiveness research that identifies effective treatments is needed. While there are many early-stage efficacy investigations available that provide preliminary support for the efficacy of speech-language pathology interventions to improve speech, language, and social communication, much more research is needed. In particular, group design studies directly comparing the effectiveness of different approaches using randomly assigned, matched control samples with sufficient sample sizes, and adequate statistical power are needed. To date, the evidence is inconclusive regarding whether any one approach is more effective than another. There also needs to be greater emphasis placed on subgroups within the ASD population and the responsiveness of these subgroups to various treatment approaches. Comparative effectiveness research should clarify our understanding of the effectiveness of different intervention approaches, especially with respect to which approaches provide the most meaningful communication and social interaction outcomes for young children with autism. Given that the core features of ASD entail impairments of social communication and language use, the discipline of speech-language pathology has much to contribute to future research evaluating the comparative effectiveness of approaches to treating social, communication, and cognitive impairments in ASD. Research also is required to determine how common practice in screening, assessment, and treatment is affected by state and local regulation and state interpretation of federal guidelines. The American Speech-Language Hearing Association (ASHA) suggests inserting the word communication into the following Short-Term Objective: B. Test safety and efficacy of at least five widely used interventions (e.g., nutrition, medications, assisted technologies, sensory integration, communication, medical procedures) that have not been rigorously studied for use in ASD by 2012. IACC recommended budget: $27,800,000 over five years. Regarding the following objective: Conduct five randomized controlled trials of early intervention for infants and toddlers by 2011. ASHA suggests that these trials be directed to evaluating the comparative effectiveness of approaches to treating speech-language, social, communication, and cognitive impairments in ASD. Examination of the impact of changes in frequency, intensity, and duration of treatment is a critical issue to be included in these trials. Although they do talk about frequency/intensity and duration studies it is not linked specifically to speech language pathology (SLP), social communication and cognitive impairments as above. ASHA suggests adding the following objective: By 2012, conduct three randomized controlled trials to test the efficacy and/or effectiveness of interventions to treat speech, language, social communication, and cognitive impairments for school-aged and/or adolescent persons with ASD, evaluating the comparative effectiveness of approaches in ASD. Examination of the impact of changes in frequency, intensity, and duration of treatment is a critical issue to be included in these trials.

Respondent 40

b. What are the remaining gaps in the subject area covered by this chapter?
Study the kids who have recovered from ASDs. What treatments did they use? The Autism Research Institute would be a good place to start since they have stories of kids who have recovered.

Respondent 43

Michael Framson

a. What has been learned about the issues covered in this chapter in the past year?
Biomedical (Biomed)

Respondent 45

b. What are the remaining gaps in the subject area covered by this chapter?
If a retrovirus is involved, antiretrovirals might be an avenue for research. The retroviral link needs to be substantiated and investigated with enthusiasm. Why is polymerase chain reaction (PCR) unable to detect xenotropic murine leukemia virus-related virus (XMRV) unless the patient sample is cultured and stimulated? Is it that the viral genome shifts to take advantage of the dysfunctional RNASL cell line or because of some novel translation/transcription? It is important to think of the viral genome not as a strand of deoxyribonucleic acid (DNA), but as a probability cloud. The mutation rate during transcription is not an error rate, but a decompression ratio.

Respondent 47

Duke Crestfield

a. What has been learned about the issues covered in this chapter in the past year?
Most treatments have never been tested and are faith-based instead of evidence-based. Many are damaging.

b. What are the remaining gaps in the subject area covered by this chapter?
Adaptive communication technology needs to get much better. 'Box Speak' needs to be organized according to intrinsic sense, not imitation of standard language. Much more emphasis on functional language and activities.

Respondent 48

Jason Bourret, Ph.D., BCBA-D
NECC

a. What has been learned about the issues covered in this chapter in the past year?
My name is Jason Bourret and I am a doctoral-level Board Certified Behavior Analyst (BCBA) currently serving on the Board of Editors of the Journal of Applied Behavior Analysis and answering this request for information (RFI) on behalf of the New England Center for Children (NECC). NECC appreciates the opportunity to respond to this RFI and commends the IACC on their continued work on this Strategic Plan for autism spectrum disorder (ASD) research. Question 4 of the plan is most relevant to our work and research and our response to the RFI is specifically with regard to Question 4. The Strategic Plan notes that, although there are procedures that have been shown to be effective in teaching and treating behavior problems in individuals diagnosed with autism, methods designed to identify which treatment will be effective with any given child are lacking. In the past year, there have been several advances in the development of methods for empirically assessing and selecting appropriate interventions within the field of applied behavior analysis (ABA). Most generally, this research might be broken into two overarching areas: Research on methods for identifying which problem behavior treatments will be effective with particular individuals and research on methods for individualizing teaching strategies to meet the needs of individual learners. Methods for empirically selecting and validating effective treatment for problem behavior have existed for over 25 years (Hanley, Iwata, & McCord, 2003). These assessments involve an empirical demonstration of the function of the problem behavior (i.e., whether it serves some sort of communicative function for the individual, is self-stimulatory in nature, etc.) and have been shown to identify effective, individualized treatment in hundreds of published studies (Hanley, Iwata, & McCord). In the past year, further significant advances have been made in refining these assessments. Methods have been developed to explore in more detail the role of attention and escape from demands in maintaining problem behavior (Call, Pabico, & Lomas, 2009; McGinnis, Houchins-Juarez, McDaniel, & Kennedy, 2010; Rodriguez, Thompson, & Baynham, 2010; Roscoe, Rooker, Pence, & Longworth, 2009), assess the role of various antecedents in causing problem behavior (Dolezal & Kurtz, 2010; Kuhn, Hardesty, & Luczynski, 2009), help allow the identification of preferences without inducing tantrums or other problem behavior (Kang, Lang, O'Reilly, Davis, Rispoli, & Chan, 2010), address behavior problems that are particularly challenging to assess (Bachmeyer, Piazza, Fredrick, Reed, Rivas, & Kadey, 2009; Contrucci Kuhn, & Triggs, 2009; Barnoy, Najdowski, Tarbox, Wilke, & Nollet, 2009; Herscovitch, Roscoe, Libby, Bourret, & Ahearn, 2009; Lang, et al., 2010), assess complex hierarchies of problem behavior (Shabani, Carr, & Petursdottir, 2009), and assess patterns of perseveration (Kuhn, Hardesty, & Sweeney, 2009). Assessments for identifying effective teaching approaches for particular individuals have not been as thoroughly researched. However, in the past year research has demonstrated methods for empirically identifying student preferences for different teaching approaches (Heal, Hanley, & Layer, 2009; Luczynski, & Hanley, 2009), preferences for various activities (Daly, Well, Swanger-Gagne, Carr, Kunz, & Taylor, 2009), and the effects of including choice as part of teaching procedures (Schmidt, Hanley, & Layer, 2009). Bachmeyer, M. H., Piazza, C. C., Fredrick, L. D., Reed, G. K., Rivas, K. D., & Kadey, H. J. (2009). Functional analysis and treatment of multiply controlled inappropriate mealtime behavior. Journal of Applied Behavior Analysis, 42, 641-658. Barnoy, E. L., Najdowski, A. C., Tarbox, J., Wilke, A. E., & Nollet, M. D. (2009). Evaluation of a multicomponent intervention for diurnal bruxism in a young child with autism. Journal of Applied Behavior Analysis, 42, 845-848. Call, N. A., Pabico, R. S., & Lomas, J. E. (2009). Use of latency to problem behavior to evaluate demands for inclusion in functional analyses. Journal of Applied Behavior Analysis, 42, 723-728. Contrucci Kuhn, S. A., & Triggs, S. (2009). Analysis of social variables when an initial functional analysis indicates automatic reinforcement as the maintaining variable for self-injurious behavior. Journal of Applied Behavior Analysis, 42, 679-683. Daly, E. J., Well, N. J., Swanger-Gagne, M. S., Carr, J. E., Kunz, G. M., & Taylor, A. M. (2009). Evaluation of the multiple-stimulus without replacement stimulus preference assessment method using activities as stimulus events. Journal of Applied Behavior Analysis, 42, 563-574. Dolezal, D. N., & Kurtz, P. F. (2010). Evaluation of combined-antecendent variables on functional analysis results and treatment of problem behavior in a school setting. Journal of Applied Behavior Analysis, 43, 309-314. Hanley, G. P., Iwata, B. A., & McCord, B. E. (2003). Functional analysis of problem behavior: A review. Journal of Applied Behavior Analysis, 36, 147-185. Heal, N. A., Hanley, G. P., & Layer, S. A. (2009). An evaluation of the relative efficacy of and children's preferences for teaching strategies that differ in amount of teacher directedness. Journal of Applied Behavior Analysis, 42, 123-144. Herscovitch, B., Roscoe, E. M., Libby, M. E., Bourret, J. C., & Ahearn, W. H. (2009). A procedure for identifying precursors to problem behavior. Journal of Applied Behavior Analysis, 42, 697-702. Kang, S., Lang, R. B., O'Reilly, M. F., Davis, T. N., Rispoli, M. J., & Chan, J. M. (2010). Challenging behavior during preference assessments: An empirical analysis and practical recommendations. Journal of Applied Behavior Analysis, 43, 137-141. Kuhn, D. E., Hardesty, S. L., & Sweeney, N. M. (2009). Assessment and treatment of excessive straightening and destructive behavior in an adolescent with autism. Journal of Applied Behavior Analysis, 42, 355-360. Kuhn, D. E., Hardesty, S. L., & Luczynski, K. (2009). Further evaluation of antecedent social events during functional analysis. Journal of Applied Behavior Analysis, 42, 349-353. Lang, R. B., Davis, T. N., O'Reilly, M. F., Machalicek, W., Rispoly, M. J., Sigafoos, J., Lancioni, G., & Regester, A. (2010). Functional analysis and treatment of elopement across two school settings. Journal of Applied Behavior Analysis, 43, 113-118. Luczynski, K. C., & Hanley, G. P. (2009). Do children prefer contingencies? An evaluation of the efficacy of and preference for contingent versus noncontingent social reinforcement during play. Journal of Applied Behavior Analysis, 42, 511-525. McGinnis, M. A., Houchins-Juarez, N., McDaniel, J. L., & Kennedy, C. H. (2010). Abolishing and establishing operation analyses of social attention as positive reinforcement for problem behavior. Journal of Applied Behavior Analysis, 43, 119-123. Rodriguez, N. M., Thompson, R. H., & Baynham, T. Y (2010). A method for assessing the relative effects of attention and escape on noncompliance. Journal of Applied Behavior Analysis, 43, 143-147. Roscoe, E. M., Rooker, G. W., Pence, S. T., & Longworth, L. J. (2009). Assessing the utility of a demand assessment for functional analysis. Journal of Applied Behavior Analysis, 42, 819-825. Schmidt, A. C., Hanley, G. P., & Layer, S. A. (2009). A further analysis of the value of choosing: Controlling for illusory discriminative stimuli and evaluating the effects of less-preferred items. Journal of Applied Behavior Analysis, 42, 711-716. Shabani, D. B., Carr, J. E., & Petursdottir, A. I. (2009). A laboratory model for studying response-class hierarchies. Journal of Applied Behavior Analysis, 42, 105-121. Winborn-Kemmerer, L., Ringdahl, J. E., Wacker, D. P., & Kitsukawa, K. (2009). A demonstration of individual preference for novel mands during functional communication training. Journal of Applied Behavior Analysis, 42, 185-189.

b. What are the remaining gaps in the subject area covered by this chapter?
Although the IACC recognizes the need for assessments to identify which treatments will be effective for particular individuals, the Strategic Plan does not currently call for research that will result in the development and refinement of these methods. We urge the IACC to include research on assessments using empirical evidence to inform selection of treatments and curricula for specific individuals as an explicit focus under Question 4. Additionally, we urge the IACC to call for the inclusion of representation from the field of applied behavior analysis at the workshop in Objective E.

Respondent 54

Rebecca Estepp
SafeMinds

a. What has been learned about the issues covered in this chapter in the past year?
Per the Autism Research Institute parent ratings of treatment usefulness (n = 27,000), the five top-rated interventions are chelation therapy, supplemental methyl B-12, specific carbohydrate diet, food allergy treatment, and melatonin (http://www.autism.com/pdf/providers/ParentRatings2009.pdf ). These interventions should be investigated. Clinicians report a variety of co-occurring medical conditions, including metabolic abnormalities, oxidative stress, mitochondrial dysfunction, body burdens of heavy metals, gastrointestinal dysfunction and pathology (constipation, diarrhea, ulcerative colitis, esophagitis, and malabsorption), dietary allergies, and immune abnormalities. They report that appropriate identification and treatment of these underlying medical abnormalities often results in improved behavior and in some instances a loss of ASD diagnosis. Investigations into the incidence of these conditions and into best treatment practices represent a critical unmet need. ASD heterogeneity must be considered when designing clinical trials. It is essential not to apply treatments across the broad spectrum but instead to identify subgroups of those who have documented medical histories or laboratory data indicating they are likely responders. It is necessary to develop multifaceted treatment modalities (as opposed to single-treatment designs) due to the complexity of medical comorbidities. Treatment of just one condition might not be as successful as treatment of several co-occurring conditions. Clinical trial methodologies must be developed that can accurately assess effectiveness of complex regimens. Recent research documented low cholesterol in an ASD subset and a clinical trial is underway regarding cholesterol supplementation. It has been the experience of clinicians that those with ASD suffer with a wide range of nutritional deficiencies and metabolic abnormalities. Hypocholesterolemia is merely one of numerous metabolic abnormalities frequently found in ASD and most likely arises from a more upstream pathology. Some clinicians postulate an inability to adequately digest as a consequence of mucosal inflammation and villous destruction resulting in deficiencies of the various enzyme populations residing in the brush border of the villi. Nutritional deficiencies should be fully evaluated to better understand underlying pathology (versus symptom resolution) to identify the most effective treatment regime.

b. What are the remaining gaps in the subject area covered by this chapter?
Short-term objective 2 that addresses co-occurring medical conditions in ASD should target conditions arising from altered/impaired immune, metabolic, and gastrointestinal function. Short-term goal C involving assessments of safety and efficacy of five widely used interventions should target those reported by parents as being most effective, such as chelation therapy (or therapy aimed at increasing glutathione and promoting detoxification pathways), supplemental methyl B-12, specific carbohydrate diet, food allergy treatment, and melatonin. Clinical trials should consider heterogeneity and subgroup based on historical or laboratory data indicating potential for benefit from the proposed treatment or intervention. Clinical trial methodologies that can assess effectiveness of multiple treatment regimens should be employed.

Strategic Plan Question 5: Where Can I Turn for Services?

Respondent 3

b. What are the remaining gaps in the subject area covered by this chapter?
In my area, the "systems" that are in place to help families affected by ASD are so disjointed. They require the same child to receive multiple evaluations through each agency, in order to access services. The multiple arms of service need to be able to work together to help families, reducing the redundancy and increasing the effectiveness of treatment. In addition, the number of professionals and individuals trained to provide intervention is totally inadequate. There needs to be an effective plan nationwide to build the capacity of professionals who are trained and qualified to help children with ASD.

Respondent 4

John Best

a. What has been learned about the issues covered in this chapter in the past year?
The only place anyone should go to learn about autism is here: http://health.groups.yahoo.com/group/Autism-Mercury/ This is where Andy Cutler teaches people how to cure autism with alpa-lipoic acid (ALA) chelation. If we cure our kids, they don't need any services you dishonest [profane language redacted].

Respondent 5

Gail Elbek
Child Health Advocates

b. What are the remaining gaps in the subject area covered by this chapter?
GAP: Stop the cause of ASD to lessen the need of services and supports. Fetal, infant, and child exposure to soy phytotoxic endocrine disruptors (ED) as repeatedly scientifically proven to cause autism and multiple neurological (and physical) disorders must no longer be IACC ignored. It is urgently important to allow the proven soy-causation of developmental mental illness as public information until proven otherwise. The U.S. Food and Drug Administration has never approved soy ED formulas or foods (or soy consumption during pregnancy) as developmentally safe or nutritional...because this is impossible.

Respondent 6

Eileen Nicole Simon
conradsimon.org

a. What has been learned about the issues covered in this chapter in the past year?
The American capitalist society is based on every individual being self-sufficient, self-supporting, and a productive tax-paying citizen. America's answer to communism is private insurance. We can't really turn anywhere else for lifespan support for the disabled.

b. What are the remaining gaps in the subject area covered by this chapter?
I used to fear dying young. Now I fear becoming totally disabled and dependent on others. None of us knows if or when we might suffer a debilitating injury. We need a better system for anticipating disaster and providing long-term care. The IACC should promote enactment of a law to require mandatory long-term-care insurance for every child born. Then if lifespan care is needed, funding will be available without having to beg for legislatures to come up with allotments from tax revenues. Mandatory long-term-care insurance would also involve actuarial scientists in identifying the most important areas of research into the causes of autism. See http://conradsimon.org/Society.html .

Respondent 8

a. What has been learned about the issues covered in this chapter in the past year?
This topic is so important. I would also add collaboration through agencies, and organizations is also very important, many adolescents, teens, and adults are in cross-system care, (i.e., the Office of Mental Retardation and Developmental Disabilities (OMRDD), the Office of Mental Health (OMH), state corrections offices).

Respondent 10

Andrea Payne

b. What are the remaining gaps in the subject area covered by this chapter?
I believe that the steps this committee and plan is taking are going to go a long way to meet the needs in this area. I hope that all the research studies and cross-specialty data taking is as effective as it sounds.

Respondent 13

Rebecca Kotter

b. What are the remaining gaps in the subject area covered by this chapter?
We have heard of many interventions that we would love to try with our child, but have found that the cost is ridiculously high. For instance, relationship development intervention was fantastic for our child, but costs thousands of dollars out-of-pocket for families. We paid for a Board Certified Behavior Analyst (BCBA) for several years at a cost of $145 per hour. Our son has severe apraxia, and we hoped our speech-language pathologist would attend Prompts for Restructuring Oral Muscular Phonetic Targets (PROMPT) training to learn how to work with him, but the training costs $10,000. Through our state we can receive free therapy which consists entirely of self-help type training such as fastening buttons and saying "hi" to peers. These therapies do nothing to address the underlying condition. Find out what actually works for our children, and then help us find a way to provide the therapy ourselves. Families should be the therapists since we are the people who care the most, have the most to gain from our child's improvements, and who are with the child the most hours.

Respondent 14

Kim

a. What has been learned about the issues covered in this chapter in the past year?
No doubt there must be a SEPARATION of services based on severity of autism. A high-functioning autistic person who drives himself to school and has a 4.0 grade point average, or who plays Chopin on Oprah, doesn't need the kind of services an autistic person wearing diapers at age 40 and needs 2 to 1 supervision for self-injury, needs.

Respondent 16

Family Voices-NJ

a. What has been learned about the issues covered in this chapter in the past year?
We reviewed the Autism Speaks 100 Day Kit found in English/Spanish at www.autismspeaks.org/community/family_services/100_day_kit.php and we would recommend a summarized version of this tool.

b. What are the remaining gaps in the subject area covered by this chapter?
1.) We agree that behavioral interventions must be researched but again the focus must be on positive behavioral supports and interventions. We agree that children with autism have more difficulty in accessing healthcare, even for something as simple as basic dentistry. We agree that insurers and schools need assistance creating organizational structures and financial incentives so that high-quality interventions are institutionalized. Our hope is that both mental health parity and healthcare reform will facilitate this. However, in education, we caution that this must be done in an inclusive manner such as capacity building grants to include students in public schools, not to build additional segregated settings. Another challenge is funding based on geographical location and we agree there needs to be consistency. We strongly support families as partners in research because research indicates that parental involvement results in better academic and health outcomes. 2.) For short-term objectives, we agree with studying how access to services affects families, not just the child, and particularly underserved families such as immigrant families, families speaking languages other than English, African-American families, and other families of color. 3.) Under long-term objectives, we strongly support increasing skill levels in service providers, including direct support workers, parents and legal guardians, education staff, and public service workers, and urge that families be required co-presenters of training for providers.

Respondent 18

Holly Masclans

b. What are the remaining gaps in the subject area covered by this chapter?
We need a voucher system for special education and especially children with autism. The children are being lumped together with every other disability and their needs are not being met. Unless your child's parent is an attorney you can forget about getting needed services from even wealthy school districts.

Respondent 22

Aimee Doyle

a. What has been learned about the issues covered in this chapter in the past year?
What I have learned is that although there are lots of services in theory, in practice they are extremely limited. Most insurance companies do not pay for autism treatments; the ones that do pay only for applied behavior analysis (ABA), and institute a cap that might cover one year of therapy. We did ABA with our son for the full five-year program and went six figures into debt. This was back when no one paid for autism therapy. Government services are dependent on government funding, which is in short supply these days. I've also learned that respite is almost nonexistent (and respite is critical for families to cope). We qualified for the autism waiver several years back, and we have been on the waiting list ever since. Our son will age out of it before we get any services -- I believe we're somewhere around number 1,000 on the waiting list now.

b. What are the remaining gaps in the subject area covered by this chapter?
I don't know that we need improved strategies so much as we need additional funding. There seems to be a lot more enthusiasm for funding research than there is for funding services for autistic kids and adults and their families.

Respondent 23

Age of Autism

a. What has been learned about the issues covered in this chapter in the past year?
[personally identifiable information redacted]

Respondent 25

Maria Durci

b. What are the remaining gaps in the subject area covered by this chapter?
Improve awareness and understanding in the general public to improve the acceptance and integration of persons with autism in their communities.

Respondent 26

b. What are the remaining gaps in the subject area covered by this chapter?
I would add that all those with an ASD diagnosis be allowed the option to access services if needed. Where I live, those with an Asperger's/Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) diagnosis are ineligible for all services except the Department of Vocational Rehabilitation. This agency is not equipped to serve our kids and has short-term followup. They do not understand this population. I would also like everyone to be better educated about Asperger's. The perception that a normal IQ is all a person needs to function well is terribly wrong. Oftentimes, it is the hidden disabilities that can be more challenging for an individual because it is perceived they do not need support or help.

Respondent 27

a. What has been learned about the issues covered in this chapter in the past year?
the need of further support

b. What are the remaining gaps in the subject area covered by this chapter?
1.) Comparison of the educational/other methodologies in the learning of autistic children, such as Treatment and Education of Autistic and Communication related handicapped Children (TEACCH), Developmental, Individual-Difference, Relationship-Based model (DIR/Floortime), modern applied behavior analysis (ABA) etc. Analysis of the best educational tools to support the strengths and to help with the weaknesses of autistic people; 2.) requirements of the inclusion in mainstreamed schools to be successful. Status of training of teachers and parents to face the challenges. Role of the stereotypes about autism in the success of the inclusion (in the case of other parents, the other children, school authorities). The impact, effects and problems of bullying, stress, anxiety, hyperactivity and depression in autism at psychological and physical level and the current treatment of; 3.) studies of successful inclusion in several jobs of autistic adults. Importance of the environment and capacitation/information about ASD and the individual attitudes in the final situation. The practical aspects of accommodation of and negotiation from autistic people and from employers. Role/adequacy of a mentoring system.

Respondent 28

J. Fenech

a. What has been learned about the issues covered in this chapter in the past year?
Most discussion only involves children. What happens when they "graduate" into the system? My daughter is 17. What do you have in mind for her and all the children like her? Haven't seen any "evidence" of support for any adults with what you call autism.

b. What are the remaining gaps in the subject area covered by this chapter?
A plan of action for those who will shortly be graduating out of the system. Job training, living arrangements, etc.

Respondent 29

Pamela Greenberg
Association for Behavioral Health and Wellness

b. What are the remaining gaps in the subject area covered by this chapter?
The Association for Behavioral Health and Wellness (ABHW), an association of the nation's leading behavioral health and wellness companies that provide an array of services related to mental health, substance use, employee assistance, disease management, and other health and wellness programs to over 147 million people in both the public and private sectors, recommends adding an objective that calls for the identification of appropriate provider training and qualifications (especially related to applied behavior analysis (ABA)). There is very limited standardization with regard to who actually provides services. If research of interventions is to be valid, there needs to be greater uniformity in training and credentialing providers.

Respondent 31

American Psychological Association

b. What are the remaining gaps in the subject area covered by this chapter?
The lack of qualified providers is compounded by the lag time in translating research into practice, which compromises the quality and availability of services for individuals with ASDs. We were pleased to see that the goals include research into the best methods of training people to work with individuals on the autism spectrum, because many families complain about the lack of well trained people (emergency medical technicians (EMTs)) and police, as well as psychologists and other clinicians). Research is needed to determine the training and qualifications necessary to deliver effective interventions for ASD, and there needs to be additional emphasis on the evaluation of dissemination and training initiatives. Research needs to identify the most effective and efficient means to recruit and retain professionals who can deliver empirically supported practices in a family-/individual-centered manner. One objective includes the development of "strategies to educate people with ASDs and families about the best ways to obtain appropriate services and supports," yet many individuals and families lack access to high quality, research-supported interventions regardless of how well informed they are. Particularly for rural and underserved populations, information and decision-making skills are less useful when communities lack qualified providers. Indeed, few evidence-based treatment options are available in many areas of the country, especially in rural areas without access to university-affiliated treatment and research clinics. The Strategic Plan outlines objectives related to improving the quality of life for adults with ASD and transitional services. This is extremely important, as the majority of children with ASD develop into adults with ASD; individuals do not typically outgrow the condition. However, one of the fastest growing segments of the ASD population is comprised of people without cognitive limitations people who, based on their assessed cognitive abilities, should be able to succeed academically and in their careers. It is therefore suggested that greater attention be given to ways that we can support adolescents with high-functioning forms of ASD who have aspirations for higher education to ensure that they succeed in college and in their vocations of choice.

Respondent 35

Marc Rosen

b. What are the remaining gaps in the subject area covered by this chapter?
Excessive reliance on labels, strong propensity for states and school districts to warehouse.

Respondent 38

Audrey Smerbeck

b. What are the remaining gaps in the subject area covered by this chapter?
Why do parents seek dangerous and/or unproven biomedical interventions? What can other service providers (e.g., teacher, pediatrician) do to aid the parent in improving decision-making?

Respondent 39

Ann-Mari Pierotti
American Speech-Language-Hearing Association

b. What are the remaining gaps in the subject area covered by this chapter?
We appreciate the inclusion of the following new objective pertaining to personnel training and development. New Objective A Evaluate new and existing pre-service and in-service training to increase skill levels in service providers, including direct support workers, parents and legal guardians, education staff, and public service workers to benefit the spectrum of people with ASD and promote interdisciplinary practice by 2015. IACC recommended budget: $8,000,000 over five years. There is a need for research in the area of surveillance of qualified professionals providing services to determine the background, training, and credentials of individuals providing treatment to those with ASD and to determine the nature of the services that are currently being provided. What services are being delivered and by whom? There is a need for research that investigates the common practices in screening, assessment, and treatment and how those practices are affected by state and local interpretation of federal guidelines. Intervention research is not yet available to predict which specific intervention approaches or strategies work best with which individuals with ASD. No one approach is equally effective for all individuals with ASD, and not all individuals in outcome studies have benefited to the same degree. Larger group-design treatment studies are needed to identify characteristics of individuals with ASD that predict response to treatment. For clinicians to determine whether an individual is benefiting from a particular treatment program or strategy, measurement of that individual's progress using systematic methods, such as in single-subject research design, is also recommended. It also will be important to support the development of sensitive outcome measures that can be used for both single-subject and larger group designs. Research should be prioritized that characterizes current ASD diagnostic and service utilization patterns in community settings, examine the relationship between the likelihood of diagnosis and the services available for individuals with ASD, and that also evaluates the effectiveness of these services and intervention outcomes. The development of outcome measures and means of monitoring progress longitudinally should also be considered a high priority. ASHA believes that these priorities are necessary to accomplish in order to address the goal of determining the efficacy and effectiveness of various approaches to treatment and are therefore foundational to other research initiatives.

Respondent 42

Peter Bell
Autism Speaks

b. What are the remaining gaps in the subject area covered by this chapter?
We have been reminded in the past year of the dearth of services for individuals with autism. Services of all kinds are lacking. Individuals with autism frequently face challenges in obtaining behavioral and physical healthcare, housing, employment, as well as community integration. As the 2010 Strategic Plan for Autism Spectrum Disorder Research acknowledges, community needs far outpace the state of research. Access to healthcare is a special concern for individuals with autism and their families. Research shows that parents of children with ASD report less access to, and more dissatisfaction with, school and community health services than parents of other children with special healthcare needs (Montes, Halterman, & Magyar, 2009). Families of privately insured children with autism face greater burdens than other families in caring for their children. They have higher out-of-pocket costs, diminished work hours and lost income, and more negative health plan experiences (Busch, & Barry, 2009). More than a decade has passed since the Surgeon General concluded that 30 years of research "demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior" (U.S. Department of Health and Human Services, 1999). The demand by families and individuals with autism for better insurance coverage continues to grow. In 2010 seven states: "Iowa, Kansas, Kentucky, Maine, Missouri, New Hampshire and Vermont" have enacted insurance reform measures, requiring coverage of behavioral treatments and other autism interventions. Since 2001 22 states have enacted autism insurance bills, while at least 20 other states consider reforming their laws. Broad state and federal mental health parity laws complement the protections afforded by state autism insurance statutes. The Patient Protection and Affordable Care Act of 2010 recognizes the urgent need for covering behavioral treatments for autism by including "mental health and substance use disorder services, including behavioral health treatment" in the essential health benefits package. The flurry of legislative activity concerning autism and healthcare is not reflected in the Strategic Plan. Question 5 of the Strategic Plan asks, "Where can I turn for services?" but answers the question only generally. Following the discussion is an aspirational goal: "communities will access and implement necessary high-quality evidence based services and supports that maximize quality of life and health across the lifespan for all people with ASD." This laudable goal would be advanced by additional research into the delivery of healthcare to individuals on the spectrum. In the entire Strategic Plan, insurance is mentioned but twice, both times under Question 6, "What does the future hold, particularly for adults?" Under the discussion of what we know about that topic, the Strategic Plan observes that "[f]amilies often report incurring large debts related to medical and educational services not covered through public programs or medical and dental insurance." The discussion then moves on to other subjects, failing to consider the consequences of the burdens placed on families and affected individuals. Under the short-term objectives listed for the chapter, the Strategic Plan lists "Develop one method to identify adults across the ASD spectrum who may not be diagnosed, or are misdiagnosed, to support service linkage, better understand prevalence, track outcomes, with consideration of ethical issues (insurance, employment, stigma) by 2015." Insurance issues facing individuals with autism of all ages warrant far more urgent scrutiny. We recommend research to better understand the consequences of underinsurance, including the failure of most insurers to provide comprehensive behavioral healthcare to individuals with autism at all ages. We also need research about the benefits, financial, health outcomes, and otherwise, of providing strong cradle-to-grave care. We do know that autism has a major economic impact (Ganz, 2007). What is needed is comprehensive research examining the impact of having access to good physical and behavioral healthcare for improving the outcomes of individuals with ASD, including their ability to live rich, full, and productive lives. The discussion under Question 6 ("Which treatments and interventions will help?") acknowledges that "[a] wide range of treatment and intervention options are available for children and adults with autism that can target core symptoms, ameliorate associated symptoms, and prevent further disability." Until the effectiveness of those treatments is more broadly understood and accepted, however, individuals with autism will continue to suffer from substandard healthcare. Autism Speaks urges the Interagency Autism Coordinating Committee (IACC) to convene a workshop or conference on coverage of health services for individuals with autism. The forum should gather information on marketplace coverage for individuals and groups under fully funded and self-funded private plans, as well as coverage under government plans, including Medicaid, the military health system, and the Federal Employees Health Benefits Program, identify gaps in care, and consider how those gaps could be closed. The IACC should report its findings and make recommendations to Congress. As states and the federal government focus on healthcare issues, the autism community looks towards the IACC for leadership consistent with its core values of urgency, excellence, and consumer focus. Additionally, the number of service providers has not kept pace with the increase demand for services in autism. This is especially true in rural areas where services can be extremely scarce. Ethnic minority populations may not have access to appropriate treatments due to language and cultural barriers. As we continue to develop effective interventions, it is crucial that we conduct health services research focused on identifying the most effective intervention training programs for both professionals and families. Research is needed to develop effective training models that are accessible to clinicians and families in both un-served and underserved parts of the country through a variety of delivery options (web-based, in-person, video conferencing). Research on training programs that can help provide continuity of care and empower families so that they are able to effectively address the wide range of challenges faced by individuals with ASD at each stage of life is especially needed. References Busch, S.H., & Barry, C.L. (2009). Does private insurance adequately protect families of children with mental health disorders? Pediatrics, 124: S399-406). Ganz, M.L. (2007). The lifetime distribution of the incremental societal costs of autism. Archives of Pediatrics & Adolescent Medicine, 161(4), 343-349) Montes, G., Halterman, J.S., & Magyar, C.I. (2009). Access to and satisfaction with school and community health services for US children with ASD. Pediatrics, 124, S407-413). U.S. Department of Health and Human Services. (1999). Mental Health: A Report of the Surgeon General, 163-164.

Respondent 44

Linda A. Fravel
Autism Insurance in Michigan

a. What has been learned about the issues covered in this chapter in the past year?
Unfortunately, I believe this body is missing the most fundamental issue of all. What use are the millions of dollars spent if families cannot afford the services that even now are indeed available??? In all but 24 states, insurance companies discriminate against children with autism! How can this be? How can this be allowed? It is a national shame! Every effort should be put forth this year to outlaw discrimination against our nation's children by insurance companies. This is a treatable, mental/physical issue--just as real as diabetes or drug dependency. PUT EFFORT HERE! Every statistic available shows that the cost to treat our children raises premiums less than one percent, if that. Other statistics show that dollars spent on early treatment saves millions of dollars over the lifetime of the affected person.

Respondent 45

b. What are the remaining gaps in the subject area covered by this chapter?
The IACC should engage the legislature with information regarding the expense of therapies, treatment and day-to-day care of autistic individuals and the terrible toll it takes on productivity, society, families, commerce and revenue.

Respondent 47

Duke Crestfield

a. What has been learned about the issues covered in this chapter in the past year?
People with ASD are not 'just like everybody else' when it comes to getting good care. Issues like atypical pain response, social processing differences, and literalism interfere with adequate healthcare. The healthcare providers know almost nothing about ASD and therefore can't incorporate it into their diagnostic and communication protocols.

b. What are the remaining gaps in the subject area covered by this chapter?
Adoption of the classification and regression tree (CART) model for comprehensive care, where appropriate.

Respondent 49

Christina Nicolaidis, MD, MPH

b. What are the remaining gaps in the subject area covered by this chapter?
I am very pleased to see the addition of the new objectives addressing services for people across the lifespan. As a healthcare provider, I regularly struggle with how to provide appropriate services to individuals on the autistic spectrum. I am assuming that the committee is including health in the concept of "quality of life" and is including healthcare services in the concept of "services". However, the objectives, as currently worded, may be misinterpreted to focus more on social issues and social services than on health or healthcare. For example, the list of service providers included in the new Long-Term Objective C does not include healthcare providers. I would suggest adding in more specific language to ensure that the new goals address issues of health and healthcare. For example the proposed new objectives could be modified as follows (additional words in ALL CAPS): Evaluate new and existing pre-service and in-service training to increase skill levels in service providers, including direct support workers, parents and legal guardians, education staff, HEALTHCARE PROVIDERS, and public service workers to benefit the spectrum of people with ASD and promote interdisciplinary practice by 2015. IACC recommended budget: $8,000,000 over five years.

Respondent 50

Theresa K. Wrangham

b. What are the remaining gaps in the subject area covered by this chapter?
Development of a coordinated, integrated, and comprehensive community-based service delivery system for people with ASD. This is not a research opportunity and should be deleted from the plan or reworked into an actual research opportunity.

Respondent 52

a. What has been learned about the issues covered in this chapter in the past year?
In these very complicated times, large systems can make an increased effort to simplify the explanation, etc. of the process. For example, use visuals -- with emphasis on sequence, timing and information. Flow charts are good --

Strategic Plan Question 6: What Does the Future Hold, Particularly for Adults?

Respondent 1

Matthew J. Carey

a. What has been learned about the issues covered in this chapter in the past year?
The future is now. Autism is a lifespan condition and should not be considered as a childhood disorder. There is a large contingent of unidentified adult autistics. The cost estimates for autism include large indirect costs for adults which includes a large loss of income. Obviously there is a large return on investment possible if we can improve the employment opportunities of adults. Even if one assumes that the true autism incidence has been steeply rising, the time to prepare for the autistic children to become adults is now. The time it will take to understand the issues and develop the supports needed is long. We need to focus attention on adult issues. This is probably one of the most important issues the IACC can focus upon and is one of the least funded areas.

Respondent 4

John Best

a. What has been learned about the issues covered in this chapter in the past year?
Standard practice is [violent language redacted], if possible, to save some money on caring for them for 60 or 70 years. You [profane language redacted] know that we could cure many of these people but that would reflect poorly on the medical profession who caused all of the autism so you pieces [profane language redacted] won't do that. I suggest that you could improve the image of doctors by telling them to admit that they screwed up and to start helping people correct their malpractice. The only way to improve quality of life is to undo the brain damage that you caused by shooting way too much mercury into their brains. All that this requires on your part is honesty, something I think you are too corrupt to agree to.

Respondent 5

Gail Elbek
Child Health Advocates

a. What has been learned about the issues covered in this chapter in the past year?
Research on how early endocrine disruptor (ED) intervention can impact health and quality of life outcomes does not mention avoidance of soy ED toxicity.

b. What are the remaining gaps in the subject area covered by this chapter?
The time has come for the IACC to seriously review and inform the public of massive evidence proving soy phytotoxic endocrine disruptor (ED) damage to brain and body development of our children. A child might be able to normally survive soy ED contamination, while known that many children will not. Until it can be proven as to which fetus, infant, child might survive soy ED poisoning this game of soy roulette must become public information to save children from a lifetime of unnecessary pain and suffering.

Respondent 6

Eileen Nicole Simon
conradsimon.org

b. What are the remaining gaps in the subject area covered by this chapter?
The sorrow continues forever.

Respondent 8

a. What has been learned about the issues covered in this chapter in the past year?
Connect family members with other families that have been through it. Here in New York state there is Parent to Parent of New York State Peer Integration.

Respondent 9

Susan Lin
American Occupational Therapy Association

a. What has been learned about the issues covered in this chapter in the past year?
The American Occupational Therapy Association (AOTA) strongly supports the aspirational goal for Question 6: "All people with ASD will have the opportunity to lead self-determined lives in the community of their choice through school, work, community participation, meaningful relationships, and access to necessary and individualized services and supports." We highly commend the IACC for developing the new short-term goals and we view the following two goals as especially important: "Develop at least two individualized community-based interventions that improve quality of life or health outcomes for the spectrum of adults with ASD by 2015. IACC recommended budget: $12,900,000 over five years." Conduct study that builds on carefully characterized cohorts of children and youth with ASD to determine how interventions, services, and supports delivered during childhood impact adult health and quality of life outcomes by 2015.

b. What are the remaining gaps in the subject area covered by this chapter?
A critical piece for Question 6 is transition planning for high school students with an ASD. While transition planning is specified by the Individual with Disabilities Education Act (IDEA), we are concerned about the variability of transition services across school systems. Occupational therapists may be invited to serve on the transition team if the student requires occupational therapy services to benefit from his or her educational program (Conaboy, et al., 2008). However, the individual with an ASD may need to learn independent living skills or job-specific skills to successfully transition to adulthood. Occupational therapy services are often provided in the earlier years of schooling for children with an ASD, focusing on promotion of learning behaviors, handwriting, keyboarding, social skills, toileting, eating, etc. However, for adolescents with an ASD, social skills interventions are needed for dating, working with peers on projects, and communicating with co-workers and supervisors (Tomchek & Case-Smith, 2009). Other skills such as money management, healthy meal preparation, and home maintenance are also important skills for adulthood. Therefore, the efficacy of occupational therapy services should be investigated as students with an ASD transition throughout their school career and post high school graduation. We support studies to identify potential barriers to comprehensive transition planning and development of models, teaming, and resources to implement transition services and plans for positive student outcomes. Once again, thank you for providing this opportunity to comment on the IACC's 2010 Strategic Plan for ASD Research. References Conaboy, K.S., Davis, N.M., Myers, C., Nochajski, S., Sage, J., Schefkind, S., & Schoonover, J. (2008). FAQ: Occupational therapy's role in transition services and planning. American Occupational Therapy Association.

Respondent 10

Andrea Payne

b. What are the remaining gaps in the subject area covered by this chapter?
My son is going to want to work a job and drive a car in six years. That's not going to be possible from where he is right now. Saving for his future is also not possible because of the massive costs we incur that there is NO funding source for; as well as the limits set by Supplemental Security Income (SSI) on how much 'cash' can be 'on hand'. If early intervention along with a behavior and education plan that meets his specific needs are the key to his future success - it should not be so hard to provide these for him. Not even three months of applied behavior analysis (ABA) was $2,600; music therapy is $160 a month; camp is $300...and so on.

Respondent 11

G. A. Elbek

b. What are the remaining gaps in the subject area covered by this chapter?
It is past due that the existing massive scientific evidence proving developmental soy phytotoxic endocrine disruptor contamination of fetus, infants, and children become publicly reported as the cause of multiple mental disorders such as autism. The FDA also confirms that soy products are chemical 1.) estrogenic endocrine disruptors, 2.) poisonous plant, and 3.) contains: toxic phytic acid, essential enzyme inhibitors, and multiple heavy metals. Each and all of these are pathologically PROVEN as neurotoxic with greatest risk of the occurrence of brain and body toxicity due to fetal, infant, and child developmental soy poisonous chemical exposure. Several hundred scientific studies repeatedly confirm that these exact adverse soy phytotoxic effects are proven to damage multiple developmental brain cell systems well-known to cause: autism, mental retardation, cerebral palsy, seizures, attention deficit hyperactivity disorder (ADHD) and more.

Respondent 14

Kim

a. What has been learned about the issues covered in this chapter in the past year?
In-home supports are far CHEAPER than institutional or group home placements! Also, there should be a push for psychiatric technicians to be doing IN-HOME nursing care supports through the regional centers, since the institutions are closing, then where the psychiatric technicians are now going to be needed is IN HOMES where these adult autistics are returning!!!

Respondent 16

Family Voices-NJ

a. What has been learned about the issues covered in this chapter in the past year?
We agree with the costs of autism but focus more on the "human" cost. Even in the education system "where services are mostly obligatory," families are having difficulty accessing services for their children. As students transition to adult life, they are put on waiting lists for services. We also feel that the "institutional level of care" requirement for home and community based waivers is too restrictive. We agree that there is little information on ASD and the justice system, but there is much data on mental health which may include autism. For example the National Center for Mental Health and Juvenile Justice study found that 70 percent the children in the system had mental health disorders. Autism is listed in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV). There must be recognition that autism and mental illness are both brain disorders. We would highly recommend consultation with Dennis Debbaudt who trains emergency personnel nationally on autism issues (see www.autismriskmanagement.com/index.cfm ).

b. What are the remaining gaps in the subject area covered by this chapter?
For long-term objectives, we agree with the studies on quality of life or health and would suggest using health outcomes, as overall health determines quality of life; further research shows that people with brain disorders die on average 20 years earlier. However, we don't feel that there needs to be a new objective on further study of cost effectiveness to examine community based supports as this data already exists, unless extended to look at quality of life and health outcomes.

Respondent 18

Holly Masclans

b. What are the remaining gaps in the subject area covered by this chapter?
Who will pay for my children's lifetime care? Will families with vaccine injured children ever see justice?

Respondent 19

b. What are the remaining gaps in the subject area covered by this chapter?
Job placement and coaching and support services need to become available across the country and a best practices consensus needs to be developed to help autistics become employed or run their own business.

Respondent 20

a. What has been learned about the issues covered in this chapter in the past year?
Gliotoxin has been shown to kill CD4 cells and may be responsible for the immune defects seen in autistic children. Lifelong screening for gliotoxin and glutathione levels in these children may be predictive of immunity based outcomes and diseases.

Respondent 22

Aimee Doyle

a. What has been learned about the issues covered in this chapter in the past year?
We've learned that there is a "tidal wave" of young autistic adults coming through the system. They will require an enormous amount of resources to support them throughout their lifespan. The United States services currently in place cannot handle 1% of children becoming autistic adults.

b. What are the remaining gaps in the subject area covered by this chapter?
I want research not just on early intervention (not everyone gets early intervention, and not everyone is helped by early intervention). I want middle-intervention, late intervention, unending intervention. After all, we don't stop treating people with cancer or other medical problems once they become adults. We should continue to research and try treatments and therapies (and more than just zombie-fying drugs) that could help adolescents and adults. Maybe applied behavior analysis (ABA) would be effective with older kids too. What you propose as a new objective is a joke "three trials for adults by 2014." Given the number of autistic kids growing up, you need a lot more than that.

Respondent 24

Ray Gallup

b. What are the remaining gaps in the subject area covered by this chapter?
If the ASD epidemic isn't be stopped there will be human and economic consequences.

Respondent 26

b. What are the remaining gaps in the subject area covered by this chapter?
What I worry about is who will look after my son when the parents are no longer around. I think he will be okay financially. He is an only child and we have no family members who would take on the responsibility of checking in with him. This is probably a community issue but I have not seen any good options to deal with this serious challenge. I worry that many will become homeless with no one to look out for them.

Respondent 27

b. What are the remaining gaps in the subject area covered by this chapter?
many

Respondent 34

Marie A. Sherrett
MPA student-Strayer University

a. What has been learned about the issues covered in this chapter in the past year?
To me, any way one looks at it, these individuals grow and live normal lifespan since they seldom drive; don't drink; don't use drugs and yet need jobs, recreation and a sense of purpose in life. To that end, free support services should be available for all those families, including not just special education needs until age 21, but also respite care and assistance to the families. Few know the hidden costs to families of those with autism. Research says the mothers have a hard time at work if they have kids with autism. That's because few want to help unless they get paid and extended families are scared of autism and often just say, "I don't know how you do it," but offer no help. Social Security laws must be changed so once a person is identified with autism, that family immediately gets $1,000 tax-free monthly forever to help pay for autism's costs. It would go a long way to offset the financial deficits connected to autism. Marie A. Sherrett, [personally identifiable information redacted]

Respondent 35

Marc Rosen

a. What has been learned about the issues covered in this chapter in the past year?
Strong probability of discrimination in higher education, housing, employment, and in receipt of services. Especially strong probability that employers will attempt to block individuals from utilizing services they have attempted to access.

b. What are the remaining gaps in the subject area covered by this chapter?
Failure to provide proper education on self-advocacy.

Respondent 38

Audrey Smerbeck

a. What has been learned about the issues covered in this chapter in the past year?
There are no goals pertaining to people with ASDs and the law. There have been multiple recent news stories involving a person with ASD who ended up receiving overly harsh or violent treatment by the police because there was little understanding of the individual's seemingly bizarre behaviors.

b. What are the remaining gaps in the subject area covered by this chapter?
People with ASD have difficulty with complex communication skills like selecting the relevant details or appearing trustworthy. This means that people with ASD may have particular difficulty clearly explaining themselves if they are interviewed by the police, whether as a witness or a suspect. There is a rich literature looking at interview techniques which are most effective with typically developing children. It would be worthwhile to begin examining which interviewing techniques are most effective for people with ASD. Examine access to skilled and knowledgeable practitioners for social skills training, counseling, psychiatry, primary care medicine, etc., particularly keeping in mind that adults with ASD who do achieve some level of independence are still typically underemployed and are unlikely to afford the highest-tier practitioners. There is nothing in the chapter on the neurodiversity movement. It seems to mean different things to different people, but generally speaking it refers to a group of adolescents and adults with primarily high-functioning ASDs who feel the balance between acceptance and treatment should shift more toward acceptance than at present. Establishing studies about quality of life and positive outcomes cannot really be done unless it is understood that people with ASD may have different ideas about what constitutes a quality life or acceptable outcome. For example, a highly intelligent person with ASD who is employed as an auto mechanic may be rated as "underemployed" in an outcome survey, when in fact that individual may truly prefer being a mechanic because it matches his interests. There certainly are people with ASD who really are underemployed because their ASD symptoms prevent them from getting and keeping a job that uses their skills, but the mechanic example shows how the issue is more complicated than a traditional quality of life survey would indicate.

Respondent 39

Ann-Mari Pierotti
American Speech-Language-Hearing Association

b. What are the remaining gaps in the subject area covered by this chapter?
Research devoted to examining the content as well as frequency.

Respondent 42

Peter Bell
Autism Speaks

b. What are the remaining gaps in the subject area covered by this chapter?
Research is needed to develop and validate a life skills assessment and evaluation tool specifically for young adults with autism. Too many individuals with autism exit the educational system without the necessary life skills to hold a job, live as independently as possible, and find their place within their community. Transition plans are put in place, but without an autism specific life skills assessment and evaluation tool, it is difficult to pinpoint exactly what skills have been mastered and what needs to be worked on prior to completion of secondary education. This tool (think an "Assessment of Basic Language and Learning Skills (ABLLS) for Life") would then be used to develop curriculum so educators would have a consistent set of life skills that students with autism would work to accomplish before leaving the educational system so that they would be better prepared for employment, housing and community life.

Respondent 47

Duke Crestfield

a. What has been learned about the issues covered in this chapter in the past year?
A whole new world has emerged as parents of ASD kids are discovering that they are also on the spectrum, and the issue has become popular, with the Wired's 'Geek Syndrome' issue and the movie 'Adam'. This gives us the first view of a productive culture of people on the spectrum who are not defined by pathologies.

b. What are the remaining gaps in the subject area covered by this chapter?
Huge problem with people aging out of services. Teenagers have little available, and adults almost nothing.

Strategic Plan Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?

Respondent 1

Matthew J. Carey

a. What has been learned about the issues covered in this chapter in the past year?
We are obviously missing a large fraction of both adults and children with ASDs. The Autism and Developmental Disabilities Monitoring (ADDM) Network identifies a number of children who previously did not have an ASD diagnosis. It is very likely that the vast majority of ASD adults are unidentified and underserved.

Respondent 4

John Best

a. What has been learned about the issues covered in this chapter in the past year?
You don't need any research. Just call me and I'll tell you what to do [personally identifiable information redacted]. We do need enhanced surveillance to monitor the activities of some real [profane language redacted] Alison Tepper Singer and Ari Ne'eman who constantly spread propaganda to try to convince parents to allow their autistic kids to rot instead of curing them. It would be easier to [violent language redacted].

Respondent 5

Gail Elbek
Child Health Advocates

a. What has been learned about the issues covered in this chapter in the past year?
GAP: IACC must care to review already established research, support existing scientific research, improve communication by reporting that soy endocrine disruptor (ED) poisoning is repeatedly proven to cause ASD and related medical conditions as required by the Combating Autism Act of 2006 (P.L. 109-416).

b. What has been learned about the issues covered in this chapter in the past year?
GAP: IACC must care to review already established research, support existing scientific research, improve communication by reporting that soy endocrine disruptor (ED) poisoning is repeatedly proven to cause ASD and related medical conditions as required by Combating Autism Act of 2006 (P.L. 109-416).

Respondent 8

a. What has been learned about the issues covered in this chapter in the past year?
Interagency sharing. Why reinvent the wheel?

Respondent 10

Andrea Payne

b. What has been learned about the issues covered in this chapter in the past year?
As this is really uncharted territory, I believe that the IACC Strategic Plan is about as good as it can be at this time. Please feel free to contact me if I can be of any service. My son covers just about every specialty and 'research' possibility that has been mentioned - with a few obvious exceptions.

Respondent 11

G. A. Elbek

b. What has been learned about the issues covered in this chapter in the past year?
What needs to be done? Practice what you preach. There exists massive scientific evidence proving without doubt, the developmental soy poisoning causation of autism and mental disorders.... COMMUNICATE this established scientific confirmation information to the public. ENHANCE SURVEILLANCE (database) of this common link of toxic endocrine disruptor exposure among autistic children. SUPPORT research that is already proving the soy phytotoxic causation of autism. Do not protect (soy) industry, do not depend on industry funded and manipulated research. Report existing scientific evidence that overwhelmingly UNDERSTANDS ASD epidemiology and proves soy-poisoning causation of irreversible neurological (and physiological) disorders and diseases.

Respondent 13

Rebecca Kotter

b. What has been learned about the issues covered in this chapter in the past year?
I feel there is a disconnect between scientists and practitioners. I often read research articles stating "this finding may have implications for future treatment of autism" yet I can almost hear them add "but we're not looking into it...." I bring up current research topics with practitioners and they look at me blankly - I think they aren't following the science, and the scientists aren't interested in the practical application of their findings. We need someone bridging that gap and looking for ways to apply science.

Respondent 14

Kim

a. What has been learned about the issues covered in this chapter in the past year?
High school vocational programs should be encouraging students to look into IN-HOME nursing care vocations like licensed vocational nurses (LVNs) or certified nursing assistants (CNAs) since there is a major shortage and the schooling isn't as long or hard as becoming a registered nurse (RN), yet it's a respectable job and highly needed, now that the institutions are closing and tons of autistic adults are being thrown back into the community! You never see ads in papers extolling the rich humanitarian benefits of working with autistic adults in their natural homes...yet it's what is needed. Also, the nursing industry is in DIRE need of a standard of care for severely autistic individuals who are a danger to self or others...these agencies are sending families 5'1" nurses and caregivers to handle 6'2" autistic patients! That's just [derogatory language redacted]. Also group homes. There must be a HEIGHT and ability requirement for ALL caregivers/nurses who are assigned to self-injurious or aggressive autistics! This is a NO-brainer and NOBODY has ever addressed this.

Respondent 16

Family Voices-NJ

a. What has been learned about the issues covered in this chapter in the past year?
We agree that there are multiple data sources and hope that the ARRA funding on health information technology will facilitate data sharing.

b. What has been learned about the issues covered in this chapter in the past year?
There are no gaps as we agree with the goal and short-/long-term objectives.

Respondent 20

a. What has been learned about the issues covered in this chapter in the past year?
An infrastructure that allows for testing and retention and analysis of data and outcomes from treatment protocols should be put into place. Additionally, a surveillance program should be instituted whereby environmental metal levels are measured in water, air and other samples. For instance, high-fructose corn syrup used as a sweetener is often produced using a chlor-alkali process that uses mercury. This mercury can be transferred to the gastrointestinal (GI) tract and can be converted to ethyl mercury by bacteria causing elevated mercury levels. This mercury is toxic to brain tissue, particularly with a disrupted metallothionein system.

Respondent 22

Aimee Doyle

a. What has been learned about the issues covered in this chapter in the past year?
There seem to be plenty of people interested in doing genetic research. Additional grant funding in other areas would encourage young scientists to gravitate to ASD research other than genetics.

b. What has been learned about the issues covered in this chapter in the past year?
One thing that strikes me as key would be to eliminate everyone from the IACC who does not have a family member with autism or who does not actively treat individuals with autism. Without these qualifications, they really can't relate. In terms of ASD epidemiology, I'm curious about the numbers for nonverbal ASDs, pervasive developmental disorders (PDDs), high-functioning autism (HFA), and Asperger's. How does the spectrum break down in terms of numbers in these different groups. I'm also curious about the international picture. Are other countries experiencing the same autism epidemic that we are? If yes, what can we learn from them and they from us? If not, then why not?

Respondent 24

Ray Gallup

b. What has been learned about the issues covered in this chapter in the past year?
Check out the figures of the ASD epidemic as well as the science showing a link between vaccines/autoimmunity/and gastro to ASD epidemic before it is too late.

Respondent 31

American Psychological Association

b. What has been learned about the issues covered in this chapter in the past year?
The public's lack of understanding of ASD often leads to isolation of the family and added psychological stress on the family. Thus, we would like to see more specific discussion about the creation of general public awareness programs to reduce stigma for those with ASD.

Respondent 38

Audrey Smerbeck

b. What has been learned about the issues covered in this chapter in the past year?
Is there currently some kind of centralized database for researchers to post null results? Is there any incentive that they do so? As things are right now, meta-analyses suffer severely from publication bias. When examining treatment studies and especially when replicating them, consider requiring the use of multiple and/or novel outcome measures. When the treatment is keyed to improving scores on a single outcome measure, the result is sometimes a treatment which improves the outcome score but does not significantly improve day-to-day function (i.e., failure to generalize).

Respondent 45

b. What has been learned about the issues covered in this chapter in the past year?
Accountability also includes systemic accountability, surveillance of industry employment trends creating conflicts between employment in public service, employment at non-governmental organizations (NGOs) and employment at pharmaceutical and equipment manufacturers. Agency accountability necessitates background checks including domestic and offshore banking. The IACC should not accept studies from NGOs unless the principals of the study are cleared in an investigation for conflicts of interest. The lack of accountability and the performance of the IACC, Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), National Institute of Mental Health (NIMH) and let us not forget the American Academy of Pediatrics (AAP) have devastated between patients, doctors and government. The individual IACC members have received notification of a proposed possible link between xenotropic murine leukemia virus-related virus (XMRV) and ASD such that each cannot claim ignorance.

Respondent 47

Duke Crestfield

a. What has been learned about the issues covered in this chapter in the past year?
There are many things that are obvious to people on the spectrum that are incomprehensible to neurologically typical (NT) individuals.

b. What has been learned about the issues covered in this chapter in the past year?
People on the spectrum need to be much more involved in all areas of study and practice. There are many things that are obvious to people on the spectrum that are incomprehensible to neurologically typical (NT) individuals.

Respondent 50

Theresa K. Wrangham

b. What has been learned about the issues covered in this chapter in the past year?
Data sharing opportunities in the environmental sciences exist that are not listed within the plan that have previously been recommended. The Coalition for Sensible Action For Ending Mercury-Induced Neurological Disorders (SafeMinds) made these recommendations in previous comments and the plan would benefit greatly from the integration of environmental data that exists to furthering discovery of environmental triggers and gene/environment interactions. (J) Develop the personnel and technical infrastructure to assist states, territories, and other countries who request assistance describing and investigating potential changes in the prevalence of ASD and other developmental disabilities by 2013. IACC Recommended Budget: $1,650,000 over three years. - This is not a research opportunity and should be deleted or reworked into a research goal.

Strategic Plan Question 8: Other Information

Respondent 1

Matthew J. Carey

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
I would like to thank the IACC for their hard work.

Respondent 2

K. MacDonald

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
I appreciate the opportunity to provide input, but don't feel parents of children with autism are fairly represented on the IACC. I feel all three of my children were harmed by their childhood vaccines, and all three were greatly helped by the Defeat Autism Now (DAN) approach to treatment. I find it frustrating and infuriating that the IACC is going out of its way to avoid researching vaccine safety and "alternative" treatments, in spite of the probability that this would be the most promising direction to go. After all, if you can avoid injuring kids in the first place, that would solve quite a few problems right there! If you don't put all the vaccine research back in, after removing it in such an unethical manner, how can anyone trust your eventual "conclusions"? If you don't ask the right questions, you'll never get the right answers! I'm really hoping this isn't going to be a giant waste of taxpayer dollars. At this point, I'm very skeptical. Please, surprise me! PS I am also a healthcare professional, and deeply distressed at the lack of integrity which has crept into the medical profession over the past several decades. Medical research should be done honestly, and not manipulated to come to a predetermined conclusion!

Respondent 4

John Best

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
The only plan you [profane language redacted] have is to waste our time talking about this instead of simply telling the truth. So, my advice for you is to stop wasting our time by promoting [profane language redacted] that I have to bother refuting. I have better things to do than reading your lies so I can expose your dishonesty.

Respondent 5

Gail Elbek
Child Health Advocates

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
During the past year, countless times I have contacted the U.S. Department of Health and Human Services (HHS), U.S. Food and Drug Administration (FDA), National Institute of Mental Health (NIMH), and the IACC with massive scientific evidence PROVING extensive soy phytotoxic causation of autism and countless disorders/diseases without your return interest. WHY?

Respondent 6

Eileen Nicole Simon
conradsimon.org

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
I posted my website on autism, http://conradsimon.org/ , 10 years ago. My understanding of brain injury underlying developmental language disorder is described there. In 1975 and 1976 I published two papers based on the research I did for my doctoral dissertation: 1.) Simon, N. (1975). Echolalic speech in childhood autism: Consideration of possible underlying loci of brain damage. Archives of General Psychiatry, 32(11), 1439-1446. 2.) Simon, N., & Volicer, L. (1976). Neonatal asphyxia in the rat: Greater vulnerability of males and persistent effects on brain monoamine synthesis. Journal of Neurochemistry, 26(5), 893-900. The auditory nuclei in the midbrain, the inferior colliculi, have higher blood flow and metabolism than any other area of the brain, thus are susceptible to injury from all of the etiological factors associated with autism.

Respondent 8

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Thank you for giving me the opportunity to make my voice heard!!!!

Respondent 10

Andrea Payne

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
I believe that the goals and objectives are well defined and am impressed with the inclusiveness of all areas that are of concern to me. It is very well written; however, could lead to confusion with parents who are new to the diagnosis or not as knowledgeable. I do wish that there was information regarding how I could provide 'data' regarding my child's disorder to the collective agencies currently in charge of the research. There are multiple areas that he would be 'grouped' in.

Respondent 11

G. A. Elbek

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Your missing the boat. I am at a loss for words as to WHY the IACC continues to ignore massive scientific evidence of soy phytotoxic causation of developmental mental disorders. As soy industry increases the manufacturing of soy formulas, foods, beverages, for human consumption, fetus, infants, and children are increasingly soy poisoned as evidenced by the epidemic of autism and in fact several increasingly severe children's diseases. Soy estrogenic endocrine disruptors, soy phytic acid, soy heavy metals, soy poisoning...especially during most fragile developmental exposure is a scientifically concluded cause of irreversible mental retardation and a host of physiological and reproductive adverse effects, yet to be publicly exposed. When will IACC encourage and enforce the repeatedly proven developmental soy phytotoxic causation of mental disorders and disease as public information in accordance to your promised duty?

Respondent 13

Rebecca Kotter

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Thank you for your dedication and work on this important topic.

Respondent 14

Kim

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Height, weight, physical and psychological abilities must be put into requirements of all health care workers, including licensed vocational nurses (LVNs), certified nursing assistants (CNAs) and registered nurses (RNs) (psychiatric technicians already have this in place) that they MUST be able to physically handle the adult autistic patients. Many deaths and injuries to autistic persons have happened due to the inability of the LVN/CNA or RN to PROTECT the autistic person.

Respondent 15

George

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Look at other methods. Do not get held up with evidence-based practice (EBP)/quality assurance (QA); these tend to have subjects that never end. When does quality assurance ever end?

Respondent 16

Family Voices-NJ

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Family Voices is a national network that advocates on behalf of children with special healthcare needs. Personally, as the Family Voices Coordinator for New Jersey, I am the parent of a child with multiple disabilities, including autism. We support the majority of the Strategic Plan with the exceptions noted above. We recommend looking into existing diagnostic tools, clinical practice guidelines/policy statements, and current research rather than "reinventing the wheel" to be more cost effective. We also believe that there are many more areas where the needs of and strategies for other developmental disabilities mirror those for ASD and would welcome a more integrated approach rather than the current focus which seems to be "all autism all the time." Thank you for the opportunity to comment.

Respondent 18

Holly Masclans

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Stop wasting time and money and remove Alison Singer from the committee. She is working for Paul Offit and the pharmaceutical companies.

Respondent 19

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Please look into animal models for autism triggers from environmental exposures. The genetics model has not produced enough advances we need. The epigenetics (influence of environment on underlying genetic vulnerabilities) looks very promising and should be more important than genetics alone.

Respondent 22

Aimee Doyle

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
I want to see a greater sense of urgency. Why isn't the Centers for Disease Control and Prevention (CDC) willing to call this an epidemic? Other epidemics have been defined as epidemics with far less than 1% of the population being affected. For boys, the figures are greater than 1%. This is a public health crisis. In the Strategic Plan, and also in the IACC meetings I have read about, I have the sense there's a lot more curiosity and interest in Asperger's -- and a celebration of "neurodiversity" -- than there is compassion and effort directed toward the severely and moderately autistic individuals and their families.

Respondent 24

Ray Gallup

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
More should be done to look at the autoimmune/gastro/vaccine link to ASD epidemic.

Respondent 28

J. Fenech

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Stop funding studies that "help" with diagnosis. We are OVER-AWARE of autism already. All the genetic studies have been useless in helping kids recover. Why don't you talk to the families of recovered or even recovering children and support what they are doing. You need to come out and strongly announce "front page" that autism is exploding. It is a slap in the face to constantly hear from those who have media attention that "autism has always been around and we are now better at noticing it." What a bunch of [offensive language redacted]. That should be number one. Loud and clear. Then maybe there would be some URGENCY about finding some answers. Day in and day out the problem grows and yet, no answers. My family has been working constantly for over 15 years to help my daughter. She has come very far, but is not yet recovered. I wish your agency had the same URGENCY as we do. The clock continues to tick-tock. If people on this committee are not fully committed to finding answers to this epidemic NOW, cut them loose and bring on more people that are - namely PARENTS WHO HAVE BEEN IN THE TRENCHES.

Respondent 38

Audrey Smerbeck

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
I don't know if you have any members of your committee with ASD. If you do not, I think you should recruit one, if not several. Keep in mind that people with ASD often see issues differently than neurotypical people and may not have the same priorities. It only makes sense that research on ASDs should, at least partially, reflect the priorities of people with ASD.

Respondent 40

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Since both the IACC and the Centers for Disease Control and Prevention (CDC) are agencies within the U.S. Department of Health and Human Services (HHS), I doubt any meaningful research into a possible link between vaccines and autism will emerge from the IACC. The CDC recommended the vaccines so the IACC cannot find that a sister agency is linked to the autism epidemic. Moreover, parents are suing HHS under the National Vaccine Injury Compensation Program to receive compensation for their vaccine-injured children who suffer from autism. If the IACC finds vaccines are linked to autism, it would be providing evidence for insurance claims against its own department. Dr. Insel admitted conflicts of interest in studying the role of vaccines in autism when he cited the pending legislation against HHS as a reason to cancel two studies that would have investigated the possible link. The IACC must be removed from the HHS.

Respondent 41

Judith Palfrey, M.D.
American Academy of Pediatrics

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
July 29, 2010

Office of the Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, Room 8185
Bethesda, MD 20892-9669

RE: Notice No. NOT-MH-10-025, Request for Information on Updating the Strategic Plan for ASD Research

To Whom It May Concern:

On behalf of 60,000 pediatricians, pediatric medical subspecialists, and pediatric surgical specialists of the American Academy of Pediatrics (AAP), I appreciate this opportunity to offer comments to inform the annual update of the Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder (ASD) Research in response to a request published in the Federal Register on July 1, 2010. The Academy is committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults.

AAP recommends a number of inclusions in the updated 2011 Strategic Plan. First, AAP supports the inclusion of added research related to evidence based approaches to evaluation and management of ASD and the addition of service-based research into barriers to care. As such, comparative effectiveness studies are of high importance. Further, we encourage the IACC to include cost-effective prevention and identification of co-morbid mental health disorders in the update.

AAP urges that clinical trials of popular, but unproven, interventions be held to the generally-accepted scientific standards of the field. Regardless of whether reported interventions are considered "novel" or "conventional," all are equally unproven if they have not been critically examined using scientific standards and should clearly be identified as such in the plan. Families of children with autism deserve accurate information that allows them to choose between all available evidence based interventions as they are developed and analyzed.

While the research agenda needs to reflect the clinical needs for diagnostic and therapeutic trials, we, as clinicians, understand and respect the critical need to have basic science research funded. Knowledge gained in basic research related to the neurobiology of autism is our main hope for future prevention and effective treatment.

Furthermore, we advocate that the IACC's public member roster include additional representation of experts in pediatric medicine, given the responsibility of both general pediatricians and pediatric subspecialists in both screening for ASD and subsequently providing a medical home in which appropriate medical interventions occur.

Thank you for your dedication to the health and well-being of all children, including those with autism spectrum disorders. We look forward to future collaborations as you move to update and implement this 2011 Strategic Plan.

Sincerely,

Judith S. Palfrey, M.D., F.A.A.P.
President

Respondent 45

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
You are losing families out here. This is a crisis. If it turns out to be a virus, the species will survive, technically. The technology-dependent social society, however, will be doomed.

Respondent 46

Martha England

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
July 29, 2010 RE: ASD Regression Studies To Whom This May Concern, I am very pleased to read that your new Strategic Plan 2010 will be having a focus on ASD regression. There is regression and then there is "perceived" regression. When my son,[personally identifiable information redacted], who has ASD, was in grade school he learned how to print words on a page. I suddenly found at about the age of 7 that when he began to learn cursive writing that he was getting the same spelling words wrong. He usually got 100 percent on spelling tests so I looked further. What I discovered was that he wasn't recognizing the print word as the same as the cursive word. They were each exclusive to him. I devised a spelling sheet for the teachers to print each word in one column, put it in cursive in the next column and then the meaning in a next column. This eventually trained his system to recognize words associated in either manner. Typically, it could have looked like it was regression, as that is the exact age group that regression is mostly seen. At that time, a study on ASD regression was being done somewhere, I don't recall, where I made the statement of a definite distinction needed to be identified between what was real regression and what was simply ASD inability to make transitions or recognize for associations. An ASD learning hurdle is a whole lot different than actual regression of a disorder. I'm afraid there may have been too many people given medications on that assumption for ASD regression when it may have been something else quite simple. Sincerely, Martha England ************************************************************************

July 29, 2010 RE: MMR (measles, mumps, and rubella) vaccine and ASD To Whom This May Concern, The reason I am writing you is because after it has be determined over and again that the MMR (measles, mumps, and rubella) vaccine does not cause ASD, the question still remains on the lips of every parent: Why do they see the onset of ASD appear right around the time they get the MMR vaccine? This question that remains is still responsible for too many children not being given needed vaccines even today. Please consider that it could simply seem to be due to a natural process of hemispheric dominance and suppression that no longer masks the underlying deficit causing ASD that becomes apparent only as one hemisphere becomes more dominant and primarily functioning. While I was reading studies about the brain's natural process of hemispheric dominance (HD) and suppression in development as a result of some other ongoing research I am doing on ASD, this is what occurred to me. It's no surprise that there are hemispheric differences in persons with ASD as well as deficits in automatic processing, and there are plenty of studies to reference that. While doing some reading of studies, I happened to notice many typical right hemisphere (RH) characteristics matched those of many ASD deficit areas, and many typical left hemisphere (LH) characteristics matched those of many ASD hyper-ability areas. I then noticed that the age range of that natural process of HD was practically the exact same age range as seen in early onset ASD, as well as the same age range when the MMR vaccines are given. I do not know if ASD is the result of problems in that hemispheric process or region. What I do strongly think is that the natural HD process and suppression that occurs explains why it is that we actually begin to see early onset ASD symptoms and why they fade in while abilities fade out. I also think it begins to occur only after both hemispheres are no longer working as much together, thereby no longer compensating for each other, once that natural HD process begins and suppression of the nondominant hemisphere takes place. It also seems to me that the degree of the HD process and suppression that takes place has a lot to do with the various levels of ability, severity of motor related issues, language issues, literal interpretation issues and the variety of different, yet, same symptoms of ASD. I think this is because the HD process is in itself very individualized and subject to stimuli. I do not think it is the actual cause of ASD itself. Due to the fact that the ASD onset and symptoms are present in the same exact manner for those with ASD who have never even had the MMR vaccines, I do not feel that the MMR in any way interrupts or interferes with that natural HD process or its suppression, therefore, is not responsible for the early onset symptoms of ASD that emerge at the same age range they are getting the MMR vaccine. It excludes the MMR as cause of early onset ASD entirely, which concurs with all current findings. Additionally, I feel that the validity of testing for ASD might be questioned up until the point whereby that natural HD process and suppression finally occurs, along with most allowed hemispheric functionality, as the full scope of the ASD symptoms are probably not apparent until then. I am not a physician, only the parent of my son, [personally identifiable information redacted], who has ASD. I feel very strongly about this being the actual reason we see the early onset ASD symptoms when we do and I am hopeful that it will put that last lingering question to rest so that families will get their children vaccinated with peace of mind. Sincerely, Martha England

Respondent 47

Duke Crestfield

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
Impressive. Thanks.

Respondent 50

Theresa K. Wrangham

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
More public engagement opportunities that allow parents to participate and comment on the plan and IACC meetings similar to the Institute of Medicine (IOM) and the National Vaccine Advisory Committee (NVAC) are necessary. Parents of ASD children cannot be expected to travel to Washington, DC to participate and are being excluded. A model similar to what the Department of Defense Autism Research Program uses that allows for the public to participate in research decisions is also necessary, as well as more consumer representation on the IACC in general - as currently the panel is weighted in federal members.

View Archived Request Information > | Submit Comments >

Responses to the 2010 IACC Request for Information

Strategic Plan: Introduction

Respondent 1

Matthew J. Carey

Respondent 4

John Best

Respondent 6

Eileen Nicole Simon conradsimon.org

Respondent 8

Respondent 9

Susan Lin American Occupational Therapy Association

Respondent 10

Andrea Payne

Respondent 11

G. A. Elbek

Respondent 14

Kim

Respondent 16

Family Voices-NJ

Respondent 21

Respondent 23

Age of Autism

Respondent 24

Ray Gallup

Respondent 25

Maria Durci

Respondent 31

American Psychological Association

Respondent 35

Marc Rosen

Respondent 36

Mike Stanton

Respondent 38

Audrey Smerbeck

Respondent 50

Theresa K. Wrangham

Respondent 51

Mike Frandsen coachmike.net

Strategic Question 1: When Should I Be Concerned?

Respondent 1

Matthew J. Carey

Respondent 3

Respondent 4

John Best

Respondent 5

Gail Elbek Child Health Advocates

Respondent 6

Eileen Nicole Simon conradsimon.org

Respondent 8

Respondent 10

Andrea Payne

Respondent 16

Family Voices-NJ

Respondent 20

Respondent 21

Respondent 22

Aimee Doyle

Respondent 24

Ray Gallup

Respondent 27

Respondent 28

J. Fenech

Respondent 31

American Psychological Association

Respondent 35

Marc Rosen

Respondent 39

Ann-Mari Pierotti American Speech-Language-Hearing Association

Respondent 43

Michael Framson

Respondent 45

Respondent 47

Duke Crestfield

Respondent 54

Rebecca Estepp SafeMinds

Strategic Plan Question 2: How Can I Understand What is Happening?

Respondent 1

Matthew J. Carey

Respondent 2

K. MacDonald

Eileen Nicole Simon
conradsimon.org

Susan Lin
American Occupational Therapy Association

Mike Frandsen
coachmike.net

Gail Elbek
Child Health Advocates

Eileen Nicole Simon
conradsimon.org

Ann-Mari Pierotti
American Speech-Language-Hearing Association

Rebecca Estepp
SafeMinds

Gail Elbek
Child Health Advocates

Eileen Nicole Simon
conradsimon.org

Ann-Mari Pierotti
American Speech-Language-Hearing Association

Rebecca Estepp
SafeMinds

Gail Elbek
Child Health Advocates

Eileen Nicole Simon
conradsimon.org