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Strategic Plan 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 morons 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, homosexuality, 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 This link exits the Interagency Autism Coordinating Committee Web site

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 This link exits the Interagency Autism Coordinating Committee Web site.

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

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 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.

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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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