Witnesses for Congressional hearing on autism announced

28 Nov

Thursday the US House Committee on Oversight & Government Reform will hold a hearing on autism: 1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism.

The witness list has been made public on the committee’s website:

Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institutes of Health

Coleen Boyle, Ph.D.
Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Mr. Bob Wright
Co-Founder
Autism Speaks

Mr. Scott Badesch
President
Autism Society

Mr. Mark Blaxill
Board Members
SafeMinds

Mr. Bradley McGarry
Coordinator of the Asperger Initiative at Mercyhurst
Mercyhurst University

Mr. Michael John Carley
Executive Director
Global & Regional Asperger Syndrome Partnership

Mr. Ari Ne’eman
President
Autistic Self Advocacy Network

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27 Responses to “Witnesses for Congressional hearing on autism announced”

  1. Lara Lohne November 28, 2012 at 06:39 #

    For those of us that cannot attend in person, will there be any televising of this hearing that we might be able to watch? Does anyone know?

    • Sullivan (Matt Carey) November 28, 2012 at 14:44 #

      Someone sent me a link, I’ll try to find it. I think the link was to the main webpage for the committee.

      Left Bra

      • Lara Lohne November 28, 2012 at 19:04 #

        Thanks Bra, (giggle) that would be awesome!

  2. lilady November 28, 2012 at 22:38 #

    @ Left Bra(in)/Right Bra(in) :-)

    The hearing is supposed to be broadcast live tomorrow on C-Span 3

    http://www.c-spanvideo.org/schedule

    • Lara Lohne November 29, 2012 at 05:40 #

      Thank you lilady! Hopefully I can catch a bit of it while my son is at school tomorrow.

      • Sullivan (Matt Carey) November 29, 2012 at 05:55 #

        Dan Burton has a link on his website to his statement for his 2000 hearing. The link goes to whale dot to

        http://burton.house.gov/issues/autism

        Why a congressman would link to a site that discussed satanic ley lines, levitating dolphins and hosts the anti Semitic “PROTOCOLS OF THE LEARNED ELDERS OF ZION”. Seriously? He can’t be bothered to host his statement himself? He can’t link to the federal register? He has to give that site a link from the US House of Representatives?

      • Lara Lohne November 29, 2012 at 07:26 #

        It’s a sad, sad state of affairs when our elected officials lack the ability to think logically and to discern fact from fiction. I, for one, am relieved he’s retiring.

  3. lilady November 29, 2012 at 07:35 #

    I am “more than” relieved that Burton is retiring. Good riddance to this ignorant, pandering-to-the-anti-vaccinationists, Congressman. The people in his district deserve to have a better representative than Burton.

  4. Regan November 29, 2012 at 21:02 #

    Is it just me or does this seem to be something of a replay of 2002 on the focus of the Committee? Aka, vaccines – Hg, “too many, too soon”, “vaccinated v. unvaccinatied” studies, Thoreson, GFCF, etc? I can almost name the lobbying groups just by extrapolation from the things I receive in my email.
    I’m bummed out because my hope was that the committee would have moved further along at such as increased access to behavioral interventions, and adult vocation?

    • Sullivan (Matt Carey) November 30, 2012 at 15:33 #

      I hope you were able to hear the better parts of panel 2. Three panelists focused on topics of relervance.

      • g2-55fd0e9471737d19ad687ebb17264912 November 30, 2012 at 17:57 #

        Thank you (and sorry about the funny “name” – WordPress did that and I haven’t been able to fix it yet).
        I hung in there and caught the second panel – there were some excellent points made by Autism Speaks, Autism Society of America, Merryhurst U, GRASP and ASAN.
        I hope some of that resonates and sticks with the Committee as much as the vaccine talking points did, although I noticed that they circled back to those again in the Q&A.

      • Lara Lohne November 30, 2012 at 20:19 #

        I don’t think I saw the Q&A part. Was that after the committee members posed questions to the panel members or was that the Q&A part? For some reason I thought the Q&A was going to be questions posed to the panelists by members of the audience. Am I mistaken in that?

        I personally was really angered by how many people were pushing the vaccine and/or mercury causation topic. And I don’t like the end remarks made by Blaxil stating that those adults with autism that are being referred to by other panelists are only just now turning 22. That to me was completely and totally disrespectful to every autistic adult everywhere. As if he refuses to acknowledge they exist. Yet clearly they are present. I really hope that Ari’s comments about checking for prevalence in adults was taken to heart. That truly would blast the vaccine causation theory out of the water, because we know there are adults who were and are misdiagnosed or undiagnosed today. My partner is one of them. And many people who are part of ASAN are self diagnosed, but are not able to get any services they might otherwise need because they have no ‘official’ diagnosis. There in lies a huge problem, and the problem is due to people like Blaxil, who refused to acknowledge that autism has always been with us and isn’t something new.

      • Sullivan (Matt Carey) November 30, 2012 at 21:32 #

        Two things about Mr. Ne’eman’s testimony stand out for me right now. First his introduction where he discussed a gentleman with significant challenges: nonverbal, no access to AAC. It was really one of the few stances showing someone focused on the full spectrum. Second was his call for a study on prevalence in autistic adults. This is something other groups have shied away from for the past decade. Shied away from to the point where no attention has been placed on this important question. Some are content with poor data in this regard, presumably as they can be twisted to support their positions on an epidemic. I am not. I am also frustrated that this important topic has been stalled for so long, that the important information it would provide is missing. What are the living conditions for autistic adults today? Both those living independently and those not. What strategies are working and what are failing with autistic adults across the spectrum? Why are we waiting to find out?

      • Lara Lohne November 30, 2012 at 21:49 #

        Good point Matt. I predict there is going to be a lot of autistic adults up in arms if those concerns aren’t taken into consideration. People are angry about being over looked and it’s about time that changed.

      • Sullivan (Matt Carey) November 30, 2012 at 22:12 #

        Parents are up in arms too. What information do we have about what is best for our kids when the grow up? Very little. Why? Because other parents spent 10 years pushing a focus on other areas.

      • Lara Lohne November 30, 2012 at 22:26 #

        Yes, and unfortunately, based on the high frequency that vaccines was mentioned yesterday they still are. It is aggravating and frustrating to say the least. What will it take to finally convince people that vaccines play no part in autism? Why do these people have to vilify something that has given society the greatest health benefit in the history of health care? Too many questions that can’t be answered. Thanks, by the way, for providing all the information on this. And for allowing me a place to vent. I’ll be also venting to the committee as well, once I’m able to get my thoughts together properly.

  5. g2-55fd0e9471737d19ad687ebb17264912 November 29, 2012 at 21:10 #

    Anyway. I am about to stop listening to what is increasingly turning into Vaccinegate.

    • Sullivan (Matt Carey) November 30, 2012 at 16:25 #

      Except that in watergate there was something to discuss

  6. krissy November 30, 2012 at 04:42 #

    I hope your watching Nightline on ABC right now. They are talking about the restraint, tasing, physical abuse and solitary confinement used on children and teens with autism and special needs in schools and how there is a proposed federal law banning this cruel and unusual punishment. The hearing should address this.

  7. lilady November 30, 2012 at 23:08 #

    The “circumstances” surrounding this Congressional Oversight Hearing and which groups influenced Rep. Issa to set up this hearing, have been discussed on this blog and Emily Willingham’s Forbes blog, as well. (Yes, I’m looking at SafeMinds, AoA, TACA and the usual “suspects”.)

    Matt and Emily did an extraordinary job to publicize the hearing and to enable adult autistics to be added to the list of speakers. Ari Ne’eman did a superb job of describing the plight of adults diagnosed with ASDs and the paucity of employment opportunities (his comments about the supposed *epidemic* were spot on, too).

    Reading the posts on AoA…they are actually calling Blaxill’s testimony as a triumph…such is their collective delusional echo chamber.

    O/T, J.B. is baaaack…now touting a new internet survey, supposedly looking at health issues reported by parents who home-school and who do not vaccinate their kids-vs-fully vaccinated kids, that is in need of financial support. Take a look at Orac’s post, to see how he and posters there, reveal that this “new survey” is just a repeat of the unsuccessful survey that Generation Rescue attempted in 2010 and blogged about by Matt here on LB/RB….same dumb study design…same cast of characters. :-)

    http://scienceblogs.com/insolence/2012/11/29/fundraising-for-antivaccine-research/

  8. lilady December 1, 2012 at 01:40 #

    Well Matt, I’m a relative newbie on the science blogs.

    “See what you miss by not reading AoA?”

    But I do “slum” all the time…on AoA.

    That’s how I *surmised* that a poster (“rmoffi) on Emily Willingham’s blog, who was demanding a vaccinated-vs-unvaccinated “study”, was this denizen at AoA:

    http://www.ageofautism.com/2012/11/age-of-autism-weekly-wrap-betraying-americas-families-since-1943.html

    “…..SOMEONE HAS TO ASK WHY THE VAC V. UNVAC STUDY IS SO COMPLEX IT SIMPLY CANNOT BE DONE!!!!!! Let’s hear the answer so we can evaluate the “scientific integrity” behind it.”

    • Sullivan (Matt Carey) December 1, 2012 at 01:52 #

      OK, should have written, “see what I miss by not reading AoA” ;)

  9. Roger Kulp December 1, 2012 at 14:46 #

    And many people who are part of ASAN are self diagnosed, but are not able to get any services they might otherwise need because they have no ‘official’ diagnosis.”

    A lot of people will still question either the validity or severity of a self diagnosis of autism.Getting an autism diagnosis as an adult is simply just another type of self advocacy. It takes some persistence,but it isn’t all that difficult once you get into the health care,mental health,or criminal justice system.Anywhere you might be seen by a therapist,doctor,or even a social worker.If you are on the spectrum,and do not see either a doctor or mental health professional on a regular basis,have never been arrested for autism related behaviours,or are not homeless,one might argue you don’t need any services in the first place.

    • Lara Lohne December 1, 2012 at 20:34 #

      My partner has been attempting, for the past two and a half years, to get an evaluation for himself, once we came to realize his ‘quirky behavior’ was very similar to our son’s who was diagnosed with autism shortly before my partner began to seek evaluation for himself. He has exhausted all of the counselors, therapists, psychologists that our state health care will cover. He even asked our care provider for an exemption to see a specialist who could DX him but is not covered and they denied him saying there is no medical necessity for it.

      My partner just went back to work after being on medical leave for 7 months due to a break down, or regressive episode. He has co-morbid conditions also, developed after decades of living with undiagnosed ASD, which a psychiatrist has only officially said are ‘possibilities’ and require another professional to agree with in order to get those diagnosed. The professionals he has seen told him they can’t evaluate him for ASD, every time he has asked them about it specifically, the psychiatrist didn’t even know what ASD was. The purpose for attempting to get a DX is because he needs it in order to get SSI/SSDI, which he wants to get only to ensure, should he have another break down and be unable to work (he has had three or four in the time I’ve known him) our family will be more financially stable. I am unable to work as I care for him and for our son. My partner works part time from home. He works as many hours as he can, but even the few he works renders him emotionally and physically exhausted at the end. He has a form of agoraphobia but not because he fears having a panic attack when leaving the house as is typical, but the thought of leaving causes such a state of fear in him that he has a panic attack at the thought of leaving. The energy he must use just to keep himself in a state of apparently normal functioning while he is out causes him great stress and anxiety and at times can cause him to become non functional for two or three days after he leaves. He has even had periods of time where the stress is so severe that he has huge blocks of time that just go missing, yet somehow, during those missing time periods he did what it was that needed to be done, he just has no memory of it (yes, Dissociative Identity Disorder is one of the possible co-morbid conditions he has developed.) Those blank periods make him fear leaving all the more.

      These have been his life long experiences, they aren’t new, and dealing with it and the constant high levels of stress and anxiety he has had to endure just living and attempting to fit in and appear normal have cause him to develop these additional mental disorders, which he is only able to get a professional to say are possibilities, but we believe the root or core to all of it is ASD. My partner did self evaluations, not because he was trying to diagnose himself, but because he was hoping that he was imagining things, that he didn’t see similar characteristics in himself as our son has, that he didn’t fall under the autism spectrum. After taking 4 different self evaluations, which all put him well within the ASD range, he is seeking professional diagnosis, because in order for him to access the services that he needs, he needs official diagnosis, nobody will take his word for it. Diagnosis may not be as important to some people, but it is still not a bad idea to give them their diagnosis so should they require assistance and services, they have that option. Circumstances can change, life can become harder to deal with as it marches forward. Give people the option at least to decide if they want to use the services that are available, and let’s get more beneficial services up and running to help adults out. They are out there, there is no question about that. And there are many who have no official diagnosis, and these are the ones that fall through the cracks.

      FYI: a study I read a few months ago showed actually, that 40% of inmates in state penitentiaries have some type of mental disorder. Of those that have a ‘diagnosis’ about 65% are misdiagnosed with some type of personality disorder. When they are evaluated by experts on ASD and adult symptoms, these 65% are found to fall on the spectrum. So here is another problem, many adults who have ASD are being misdiagnosed with personality disorders, because too many professionals that deal with those that may end up in the places you say, Mr Kulp, do not have the expertise necessary to do an adult evaluation for ASD. And keep in mind, one cannot use the same methods to evaluate an adult that are used to evaluate a child. We are talking about an individual who has lived with this disorder all their lives, has (as my partner puts it) written software macros for social situations to allow them to appear normal, but when all is said and done, they are not. A person should not need to come home from work, take a 3 hour nap, get up, have dinner, stay awake for maybe another hour more and then go back to bed for a full 8 to 9 hours of sleep. This was what my partner had to do when I first met him and he had a full time job. This was his life, every day. This is a person who appears to be able to function well, but that functionality is taking a significant toll, and after doing this for years, there will be a breaking point. More often then not, this is the life that an adult with undiagnosed ASD lives. Would you want that for yourself or someone you care about? And trying to get services… really? You are essentially saying in order for these individuals to get assistance, they have to first break the law or become homeless. That is extremely insensitive, in my opinion.

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  1. Life sort of imitates "The Poxes" | The Poxes Blog - March 22, 2013

    […] if this happened in real life?In real life, a Congressional hearing on autism was held a couple of weeks ago. Not surprisingly, anti-vaccine organizations and people tried to […]

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