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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 This link exits the Interagency Autism Coordinating Committee Web site

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 link exits the Interagency Autism Coordinating Committee Web site). 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 This link exits the Interagency Autism Coordinating Committee Web site) 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 This link exits the Interagency Autism Coordinating Committee Web site) 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 This link exits the Interagency Autism Coordinating Committee Web site) 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 This link exits the Interagency Autism Coordinating Committee Web site

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?

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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.

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