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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 despicable [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 This link exits the Interagency Autism Coordinating Committee Web site

a. What other comments do you have about the IACC Strategic Plan for ASD Research?
I posted my website on autism, http://conradsimon.org/ This link exits the Interagency Autism Coordinating Committee Web site, 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 horse-puckey. 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.

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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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