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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 stupid. 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.

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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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