IACC meeting next Tuesday (July 9)

7 Jul

The U.S. Interagency Autism Coordinating Committee (IACC) will meet next week (Tuesday, July 9).

The agenda looks quite interesting. Dr. James Perrin, president of the American Academy of Pediatrics (AAP) and a clinical director of the Autism Speaks Autism Treatment Network (ATN) will speak. Dr. Tim Buie will speak on GI issues and autism. And there will be discussions of comorbid conditions, wandering and more.

The meeting will be videocast and be available via conference call (Dial: 800-369-3170 , Access code: 9936478)

9:00 a.m. Welcome, Roll Call and Approval of Minutes

Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC
9:05 Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital
9:20 Commentary on Parent-Physician Efforts to Address Wandering

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital
9:30 Panel on Comorbid Conditions in People with Autism
9:30-9:45 Comorbidities Among Patients Served by the AutismTreatment Network

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital
9:45-10:00 Gastrointestinal Disorders in Patients with Autism
Timothy Buie, M.D.
Associate, Department of Pediatrics
Massachusetts General Hospital for Children
10:00-10:15 Catatonia in Autism Spectrum Disorders

Lee Wachtel, M.D.
Medical Director, Neurobehavioral Unit
Kennedy Krieger Institute
10:15-10:30 Immune and Metabolic Conditions in Patients with Autism Population

Richard Frye, M.D., Ph.D.
Director of Autism Research
Arkansas Children’s Hospital Research Institute
Associate Professor of Pediatrics
University of Arkansas for Medical Sciences
College of Medicine
10:30-11:00 Committee and Panel Discussion
11:00 Meeting Report: Environmental Epigenetics Symposium
Held: March 22-23, 2013, UC Davis MIND Institute, Sacramento, California
Sponsors: Autism Speaks, Escher Fund for Autism and UC Davis MIND Institute

Jill Escher
Escher Fund for Autism

Alycia Halladay, Ph.D.
Senior Director, Environmental and Clinical Sciences
Autism Speaks
11:30 Rethinking Nonverbal Autism

Portia Iversen
Parent and Advocate
12:15 p.m. Lunch
1:15 Oral Public Comments Session
1:50 IACC Discussion of Public Comments
2:15 Break
2:30 Panel on Wandering
2:30-2:40 Wandering and Autism: What We Know, What We Need

Wendy Fournier
President and Founding Board Member
National Autism Association
2:40-2:50 IACC Activities to Address Wandering

Alison Tepper Singer, M.B.A.
Autism Science Foundation
Member, IACC
2:50-3:10 The Amber Alert Program

Robert Lowery
Executive Director, Missing Children Division
National Center for Missing and Exploited Children
Jeff Slowikowski
Associate Administrator, Office of Juvenile Justice and Delinquency Prevention
U.S. Department of Justice
3:10-3:30 Committee and Panel Discussion
3:30 Tips for Early Care and Education Providers

Shantel Meek, M.S.
Policy Advisor, Early Childhood Development
Administration for Children and Families
3:40 Science Update

Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC
4:00 IACC Business
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC

4:00-4:15 DSM-5 Planning Group Update

Geraldine Dawson Ph.D.
Professor of Psychiatry and Behavioral Sciences, Duke University
Chair, IACC DSM-5 Planning Group
4:15-5:00 OARC and IACC Business Update and Discussion
Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC
5:00-5:30 Round Robin and Open Committee Discussion
5:30 Adjournment

By Matt Carey

note: I serve as a public member to the IACC but all comments and opinions expressed here and elsewhere are my own.

21 Responses to “IACC meeting next Tuesday (July 9)”

  1. passionlessdrone July 7, 2013 at 19:29 #

    5:45 Tequila shootout.

    Come on, man.

    • Sullivan (Matt Carey) July 8, 2013 at 05:20 #

      Sounds like a good idea…except that it can’t happen this time.

  2. Martha Moyer July 9, 2013 at 18:32 #

    My son who is nearly 40 years old has autism, minimally verbal communication, IDD, OCD and even diagnosed Bi Polar (dual diagnosis) due to family history but the biggest issue is paralyzed bowels. He never toileted regularly and used to have huge bowel movements but an institution stopped with the toilet training without my knowledge and he nearly died due to a huge bowel impaction. What has saved his life is a machine I accidently found out about which cleans out the upper and lower bowel. Enemas only clean out the lower part. We can get dialysis for urinary issues but we are ignoring this simple bowel cleanout method. It pulsates water to reach both the upper and lower bowel and definitely has saved his life. He can not push out his feces! Do we just not want to address bowel issues? When I mention this miracle of a machine then insurances, Medicaid and Medicare just deny paying. They think only odd people who want to have a sauna like fun want to have such bowel cleanouts. Believe me my son is different! My son would be dead without the pulsated irrigated evacuation system cleanout treatments designed by http://www.piemed.com. He urinates fine, however. I realize this topic may not be table talk but my son’s life is more important!

    • lilady July 10, 2013 at 00:56 #

      Stop spamming the comments with your bowel impaction contraption.

  3. Rose July 10, 2013 at 17:58 #

    Constipation is a problem, especially among the ID population. Low muscle tone could have something to do with it, I don’t know. If it was your child it would be a serious problem.

    Escher gave a very interesting hypothesis. Germ cell, even in older parents is a concern, but to think of it beginning in the grandmother’s womb! I had never come across anything like that. I do know people who think some autism is hormonally related…hormone issues lead to many spontaneous miscarriages, they are deeply involved, obviously.

    I was glad to see wandering addressed. I think it is the greatest fear for some parents, especially those whose children seem to have no fear. It keeps them up at nights and wears them down. They were finally heard, and I think that is magnificent.

    I don’t know anything about the politics of it all. That’s probably best.

    I would love to hear any comments on the morning sessions. I haven’t had time to digest it all.

    • RA Jensen July 10, 2013 at 19:09 #

      Increased parental age is associated with increased autism risk. Amazingly, inceasing age of the grandparents is also associated with increased autism risk in the grandchildren. Transgenerational risk, as is the case with Jill Escher can occur when the grandmother is exposed to a pathogen that selectively targets and damages some of the eggs in the developing fetus. The mother who is unaffected and is karotype normal may produce a fetus who has the gene mutation via an egg mutation passed to the fetus from the grandmother.

      You can view via you tube how epigenetics works here:



      • Sullivan (Matt Carey) July 10, 2013 at 21:40 #

        It’s an interesting speculation at this point. I’m aware of that mini conference. I had planned to attend. Unfortunately, too many things were happening this spring.

      • LizP July 11, 2013 at 01:11 #

        As one data point, my child with Autism was born to a 20 year old and a 19 year old, her grandparents were 42, 45, 47, and 50; in my community, there are another 8 children with similar histories. Age might apply in some instances, but a sweeping generalization like this cannot be made. However, I can say, in our case, infant got vaccinated, infant lost tone, infant stopped eating, infant stopped sleeping, infant screamed in high pitched wail for hours, was taken to the hospital; infant’s development failed, infant was diagnosed with severe Autism…Infant suffered from a previously unidentified metabolic condition, which predisposed infant to crash under the metabolic challenges, presented by multiple vaccinations, administered to the infant, on a single day…

      • Sullivan (Matt Carey) July 11, 2013 at 02:24 #

        You appear to not understand the term “sweeping generalization”. Stating that advanced age is associated with autism risk is in no way a sweeping generalization. It does not, for example, preclude the fact that younger parents also have autistic children.

      • Rose July 11, 2013 at 03:13 #

        Excuse me, RAJ, can’t reply directly to Liz

        That sounds really awful, Liz. I’m sorry your baby went through that. My son had a severe reaction. I don’t know it caused his learning disability, but I just watch and wait. I’ve been doing it for 19 years.

  4. Broken Link July 10, 2013 at 22:50 #

    LJ Goes has some comments up on her FB page about the IACC meeting. I’d be interested to hear if you found these speakers to be as earth-shattering as she seems to believe, Matt.

    Dear Pharma,

    Couple things. Jenny is pretty much a done deal on The View so quit with your minions of FB. And, Dawn Loughborough, Jeanna Reed, and Jill Rubolino toppled your empire today. Yes, I know to you it seemed like a brick on lower level may have shifted or cracked…but…it was a load bearing brick. Yup. Suuuuuuuure was. Put in place by alllll the activists who came before us, whose babies are now in the care of state institutions. By all the people who have walked and marched for justice that you have silenced at every turn. They put that brick there, just the tiniest bit askew so when these ladies dropped their word bombs today the whole foundation shook. And ya know what? Lots and lots and lots of people heard. Not just the whackjob cray anti-vaxxers like me. Nopers. Good honest law abiding folks with real jobs who go with the flow. They heard. They saw the pics of our precious little “I” man. And they all realized he looks an awful lot like a whhhhhhole lot of kids they know. Kids who have been labeled “special” but are really rotting from medical neglect despite their parents HUNDREDS of attempts to interact successfully with the medical system. So…just for review, BANNER day for my people. Most profound loss, the first in a series of many, for you. Ya really need to realize that even though you control legislation and write laws that allow you to kill children…that doesn’t make you God. And well, we are moms and dads of sick kids. In the end, you are powerless against us. We are FEARLESS because you have already taken away everything that matters. And unlike you, we will willingly spend the rest of our lives getting it back. Because people mean more than profit. You will learn. We will teach you. As I often say to my son who is melting down in a fit of rage–something that happens many times daily–“it’s okay. I can be patient. I’ll wait.”

    Go write some laws that try to block us while we change the world you are trying to control. Love respect and integrity still mean something…

    You can try, but you cannot legislate morality and compassion
    … lj

    • Sullivan (Matt Carey) July 11, 2013 at 01:05 #

      Sounds like a different meeting than the one I was invloved with. I stopped keeping track of the number of times that the vaccine-causation groups have declared victory.

      • Broken Link July 11, 2013 at 03:15 #

        Good Afternoon Thinkers. Today in Washington, two highly respected members of the autism community, Jill Rubolino and Jeanna Reed, were given the opportunity to speak to the IACC. This is an incredibly important day in history because now, they can no longer say, “We didn’t know.” Because now they do and they MUST DO SOMETHING ABOUT IT. The following is Jill Rubolino’s testimony:

        My name is Jill Rubolino. I am the mother of a ten year old son who is recovered from autism and also a co-founder of the parent support group AIM, Autism Is Medical.
        I appreciate the opportunity to speak to you today.
        This is my first time attending the IACC meeting and I am appalled at the tremendous disconnect between what is discussed here and the reality of what is happening to hundreds of thousands of children and families in our country right now. Because I have only three minutes, first I’m going to read ten statements of truth followed by three requests.
        1. Thousands of children become sick first, and then get diagnosed with Autism later.
        2. Their illnesses create symptoms that are interpreted as behaviors ONLY because physicians deviate from the basic practice of medicine and no physical or diagnostic assessment is ever performed.
        3. Those “behaviors” are funneled into a diagnosis of Autism and the child is left untreated and becomes sicker.
        4. The parents are left to fend for themselves.
        5. There is no assistance or support.
        6. The children suffer in extreme pain while health care providers refuse to assess their pain and refuse treat their pain. They use the excuse that they cannot assess their pain despite the existence of multiple standardized pain assessment tools which have been developed for every patient population including nonverbal patients. Pain has been considered the fifth vital sign for over ten years and it is every patient’s right to have their pain assessed and treated as stated by the Joint Commission.
        7. Bowel disease, seizure disorder, immunological dysfunction and mitochondrial disorders are the norm in autism, not the exception so verbiage used to refer to these things as “rare” needs to stop.
        8. These illnesses are not comorbidities but causation and they need to be investigated.
        9. In the seven years I spent recovering my child, I wasn’t even aware that this committee existed, nor am I aware of anything that has been accomplished by this committee. Nothing you’ve talked about today has helped me, my child, or any one of my hundreds of friend’s children which means you are painfully ineffective.
        10. Medical neglect and discrimination against this exponentially expanding acutely and chronically ill pediatric patient population will not go unchecked. Our children deserve the same access to appropriate healthcare as every other patient.

        Here are my requests:
        1. At 1 in 50 children diagnosed as autistic, our children statistically outnumber all other pediatric illnesses. I request that this committee address this as the emergency that it is.
        2. I request a medically based standard of care for autism be developed and implemented across the broad spectrum of all health care settings starting with the pediatricians. The first intervention should be a diagnostic test, not a referral for a developmental screening.
        3. Lastly, I request that this committee recognize that they are responsible for their own direction. Failing to make the medical needs of these children a priority is endorsing the continued denial of appropriate medical care and subsequent medical neglect of a generation of children.
        Thank you.

      • Broken Link July 11, 2013 at 03:16 #

        This is what was posted on the “thinking” Mom’s revolution FB page. Did these women not attend the IACC meeting?

    • Mom October 24, 2013 at 14:15 #

      What cracks me up is how much these women believe their own hype. You’d think those 3 women were personally invited, on the agenda and gave a presentation when in fact, they spoke in the portion that is OPEN TO PUBLIC COMMENT. You know-open meetings act-where any Joe Schmoe can speak. Their egos are so out of control. And how is it possible that they have never heard of the IACC before this? Oh, because they are living in their biomed bubble of self-importance.

      • Mom October 24, 2013 at 14:19 #

        “….two highly respected members of the autism community….”


        That is debatable.

  5. Rose July 11, 2013 at 00:59 #

    Thank you, R A Jensen, I’ll look at those tomorrow. I really don’t have much of a science background and my son is mild…but it is a fascinating time to look for possibilities. Keeps my brain busy and me out of trouble.

    Thanks, too, Sullivan, for putting yourself out there. For some reason I think those who have a stake in the outcome of the meetings add a seriousness to them that can be had no other way.

    • RA Jensen July 11, 2013 at 03:13 #

      You are welcome Rose. I have a paper up at OA-Autism. In fact, two articles. I tried, as a parent,, to keep the scientific jargon to a minimum.One paper analyzes the role of environmental infliuences as it relates to de novo gene mutations that are present in the child but is not present in either parent and how advancing paternal agr is associated with increasing ratres of de novo gene mutations in sperm. The other article discusses the role of autisti-like traits as it is associated with pre, peri and neonatals factors in autism. You can read them here:


      • Rose July 12, 2013 at 02:40 #

        Wow…the de novo work was amazing. Who would have thought? It is so similar to Trisomy 21 in that age increases the chances. Autism is the male’s answer to Downs. But to think, how fragile the germ line really is.

        The second one I read, just finished, about the BAP. I need more time to digest that one and check the research to satisfy my curiosity. The table was surprising to me. I thought the percentages for Valproate and Thalidomide and Rubella “syndromes” regarding autism were far, far higher. I used to see your name all the time @ Sfari but your posts appeared too intelligent for me so I just skipped over them. I probably shouldn’t confess that, I will never learn. I was “usethebrainsgodgiveyou”, something I seldom do.

        My background is in Special Education, we studied a lot of the science of genetics regarding special needs children. I also took a lot of science hours and loved it. But I’m no scientist.

  6. RA Jensen July 11, 2013 at 15:07 #

    Here is a presentation by Professor Tim Spector on epigenetics and why he has changed his mind from being a former dogmatic genetic determinist . Thanks to advanced technology it is now known that all of us possess de novo gene mutations that are not present in our parents.

    Kong et al found The average de novo mutation rate is 1.20 × 10(-8) per nucleotide per generation with the paternal effect of an increase doubling every 16.6 years. The increase in the de novo mutation rate of single nucleotide polymorphisms is significantly dominated by the age of the father at conception of the child.

    Classical twin studies can not factor in the high rates of de novo gene mutations in autism, therefore the autism twin study heritababilty estimates are greatly inflated..


    • Rose July 12, 2013 at 12:27 #

      Gives “the sins of the father” new meaning. What are these “epigenetic drugs” in the pipeline he is talking about for autism and dementia…do you know?

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