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Autism hearing, round two

November 29th, 2012 · 10 Comments · Miseducation

3:23 pm CT – The public witnesses are seated. They are:

  • Mr. Bob Wright, Co-Founder, Autism Speaks
  • Mr. Scott Badesch, President, Autism Society
  • Mr. Mark Blaxill, Board Member of SafeMinds, an anti-vaccine advocacy group
  • 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

Bob Wright is up first. The former president of NBC Universal is schooled on how to use a microphone.

Wright is playing to the peanut gallery now, slamming Boyle and Guttmacher for their testimony.

“The CDC spends almost no money for autism – only $20 million or $30 million.”

3:32 – Scott Badesch of the Autism Society.

“The services for autism are currently difficult to navigate.” Then he blasts the IACC for not including government officials.

“The need for adult services is extensive. The greatest cliff occurs when somebody with autism turns 21, and there’s no one there to help them.”

Mark Blaxill’s turn. “I wrote a book on autism. It argues that autism is a new condition.” Before 1930, he says, the rate of autism in the US and the world was “effectively zero.”

He’s showing PowerPoint slides. “It’s obvious when somebody is autistic.” This is nonsense.

“It’s absurd to waste money on genetic research in this crisis. There is no such thing as a genetic epidemic.”  The “autism gene hunt.”

The CDC has given us securities fraud to avoid accountability for an epidemic.

3:43 – Bradley McGarry. “This is just the beginning of the wave that has been characterized as an epidemic.”

3:48  -  Michael John Carley. “Research is based on the future, and not on where the greatest need lies, which is the present.” Adults on the spectrum are starved for housing, jobs, and other opportunities. Yeah!

“We are not amidst a health crisis. We are amidst a services crisis.”  This guy rocks.

“Evidence-based conviction, not hope.”  He’s appalled that we are still talking about vaccines.

3:55  – Ari Ne’eman. “In God We Trust, everybody else bring data.”

Ne’eman doesn’t buy into the epidemic talk. He asks for a prevalence study looking at adults with autism in the US, similar to the one in the UK which found 1 percent.

Dan Burton again. “I want you to get a copy of this whole hearing, and disseminate it and try to get as many people as possible to take a look at it.”

He says the NVICP isn’t getting money to people who need it. Does he want to raid the fund?

He calls people with autism a burden.

4:05 – Rep. Cummings. “I listened to you Mr. Blaxill, and you feel there’s been a great deal of game playing.”

More epidemic talk. Ne’eman responds. “It stands in contravention to a good deal of science.”

He adds “The perception that autism is a recent new thing is damaging” because it excludes the needs of adults.

“What kind of services are you talking about?” asks Cummings.

Carley: ABA, enforcement of IDEA, housing for adults, job training. “This is not a population short on brain cells.”

Carley addresses the myth of the epidemic. Now Blaxill wants to respond.

“The 1:88 number – the CDC doesn’t break out the categories. We don’t know if Asperger’s is part of the increase.”

DSM-IV, he says, was supposed to be a “corrective narrowing” of the expansion.

The “great unmentionable – vaccines.”  An inflection point in 1990 – vaccines explain it.

“Statistical trickery” by the CDC.

Issa asks Bob Wright some questions. “There is such a wide divergence in the science. The IACC seems to be missing the mark. What is your view of what needs to be done?”

Wright: We need a nationwide strategic plan. That includes safety research on vaccines. Somebody has to coordinate all this activity. The CDC and NIH don’t do services.

“What we deal with is a lot of ignorance.” Wright was talking about doctors, not the people who applauded Mark Blaxill.

Rep. Kelly is grilling Blaxill about his criticism of genetic research. “Who else believes what you do? Why haven’t we heard of this before?”

Blaxill blames the IACC and NIH. “They are not accountable in any way. The were only trying to maintain the status quo.”

Rep. Cummings is quoting Sam Cooke – “I was born by the river….Change is going to come.”

The committee seems to have calmed down now. The talk has turned to adults with autism and services.

Spoke too soon. Blaxill is back on the “inflection point.” The beginning of the epidemic. A tsunami of desperate families. The inflection point was in 1990. So those kids are 22 NOW!! OH NOES!

Now Blaxill has been asked to comment on the Brick Township study. Scientists are being punished for being politically incorrect. The NIH enforces the orthodoxy. So does the press.

Applause.

A boy with autism wanders in front of the witness stand. I predict a strained metaphor from Mark Blaxill.

4:44 – Issa wraps up.  A list of things we have learned today. “There is nothing we heard today that is off limits for this committee to explore.”

Adjourned.

 

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10 responses so far ↓

  • 1 Lara Lohne // Nov 30, 2012 at 12:53 am

    I felt really bad for the first two panel members. They really were put through the ringer, asked questions that they obviously can’t answer because they don’t pertain to their particular area of work and/or interest within their organization. I was appalled at how many people kept hammering on about vaccines and mercury causing autism. I really wish that hadn’t been brought up at all by anyone, but expected it at least from Dan Burton and Mark Blaxil. Loved what Mr. Ne’eman and Mr Carey had to say, just wish they had been given more time to answer questions. Too much attention was focused between Wright and Blaxil, in my opinion.

  • 2 TLPG // Nov 30, 2012 at 2:22 am

    “Mark Blaxill’s turn. “I wrote a book on autism. It argues that autism is a new condition.”Before 1930, he says, the rate of autism in the US and the world was “effectively zero.””

    Someone should have shown him Eugene Bleuler’s paper in 1912 that mentioned the word “Autistic” and more importantly Emil Kraepelin’s paper on youth dementia in 1893!! Not to mention (my opinion) quotes from Harlan Lane’s translation of the paperwork about the Wold Boy of Averyon that show the earliest verifiable case of Autism in the world.

  • 3 yeah, right // Nov 30, 2012 at 8:15 am

    “DSM-IV, he says, was supposed to be a “corrective narrowing” of the expansion.”

    nice bit of high school debate tactics. The DSM-IV-tr was a narrowing of the DSM-IV. But IV was an expansion over III.

    They added Asperger Syndrome and expanded pdd-nos in the IV but with a wave of the hand, that’s a “corrective narrowing”, with plausible deniability.

  • 4 yeah, right // Nov 30, 2012 at 8:24 am

    “A boy with autism wanders in front of the witness stand. I predict a strained metaphor from Mark Blaxill”

    More in the realm of Dan Olmsted. He has his “phoning it in” corner of AoA. Look for “a child with severe autism wandered through the room and the members of congress seemed oblivious. Pretty much the same as the past 15 years”

    Not that he’s predictively repetitive or anything.

  • 5 yeah, right // Nov 30, 2012 at 8:26 am

    TLPG,

    You will find that Mark can go back in time to diagnose people with mercury poisoning, but he doesn’t think others should speculate on autism.

  • 6 Lara Lohne // Nov 30, 2012 at 2:05 pm

    After mulling all the testimony over in my head, I have come to a conclusion regarding Autism Speaks and what Mr. Wright had to say. He didn’t come right out and say that he suspects vaccines, he said his daughter does, but the fact that he mentioned that, and safety testing for vaccines and all of that left a feeling of pandering to the majority consensus of the committee members who seemed to mostly believe the vaccine causation hype. That would be political grand standing, yes?

    Lack of integrity on the part of Autism Speaks, since they have said from their inception that they do not believe vaccines are to blame, even though they are still looking for a cure. But he made no mention of that in the hearing whatsoever. In fact he seemed to go out of his way to NOT say it, even though he didn’t specifically say he did believe it either.

  • 7 Matt Carey // Nov 30, 2012 at 2:51 pm

    Lara Lohne.

    small correction: there is an “l” in Mr. Carley’s name.

    I liked what he had to say.

  • 8 Lara Lohne // Nov 30, 2012 at 3:29 pm

    Oops, sorry about that. I need to trim my nails, they are impeding my ability to type! I had watched a lecture given by Mr. Carley that was posted on YouTube several months ago now and was astounded and excited about what he covered there. I was so pleased when I heard he would be testifying. He is a great asset to the autistic community.

  • 9 lilady // Dec 12, 2012 at 5:27 pm

    It’s hard to believe that AoA’s Media Director interviewed a parent who describes their “operative” in Washington who wined and dined Darell Issa, Dan Burton and other Committee
    members…and their wives:

    http://www.ageofautism.com/2012/12/brian-hookers-testimony-autism.html

    “Brian explained how he became involved in the hearing.

    My initial thanks go to Dr. Mark Geier and David Geier, who strategically linked me up with a friend of theirs, who in turn has become my good friend as well. Through the work of this individual, Dr. Andrew Wakefield and I were invited to meet with Rep. Darrell Issa, Rep. Vern Buchanan and their wives in early May, 2012 to discuss malfeasance in the CDC regarding autism and vaccines. Andy discussed the MMR vaccine and the vaccine schedule. I talked specifically about thimerosal and the cover-up of CDC data that affirm a causal relationship between thimerosal and neurodevelopmental disorders including autism. Rep. Issa was concerned regarding the CDC information and stated that this was the type of government misconduct that his committee (Oversight and Government Reform) specifically addressed.

    I was in DC for a National Science Foundation function later the same month and had the opportunity to meet with Reps. Issa and Buchanan again, this time with Rep. Dan Burton. Rep. Issa affirmed his commitment to hold a hearing at that time. Rep. Burton detailed his valiant efforts to get the CDC and large pharma to remove mercury from vaccines and indicated that they wouldn’t listen to him. ”

    And….

    “I was able to meet with the Oversight committee staff several times between May and November, up to the day before the hearing, to discuss the pertinent details. I also was corresponding with Beth Clay from SafeMinds who was working very diligently on the issue as well. When the committee staff finally indicated the participants in the panel, I was disappointed because there was only one participating organization (Safeminds) that included the relationship of vaccines (specifically thimerosal) to autism causation within their mission. The rest of the panel would either avoid the issue or deny any causal relationship. Given the importance of autism causation, this was just not a balanced panel.”

    Holy cr*p…am I the only person who thinks that Wakefield has no business wining and dining the Committee Chair and Committee members?

    Am I the only person who questions the ethics of these bought and paid for members of Congress?

    No wonder then, why the Hearing was a sham and why adult autistics were denied an invitation to testify…until science bloggers and activists “shamed” Issa and his colleagues into issuing invitations…at the very last minute.

  • 10 Lara Lohne // Dec 12, 2012 at 7:35 pm

    lilady, you are definitely not the only person who feels the way you do. The fact that congress would allow people with an obvious agenda that is contrary to the vast majority of people within the autism community to ‘wine and dine them is just saddening and maddening in fact. I definitely sent my response to their pandering to anti-vaccine activists, making sure they are aware those people and organizations they belong to DO NOT speak for the majority of people, autistic adults and parents of autistic children, because most in fact do not believe vaccines have anything do to with causation of autism.

    I also made sure they were aware that while, yeah, autistics were allowed to testify, their words appeared to be completely ignored and it felt that it was more a courtesy so the committee members would not appear prejudiced and would appear to be politically correct. I told them they should be ashamed of themselves because only autistics know what autism is truly like and they have the finger on the pulse of the real autism community, not Autism Speaks and certainly not SafeMinds. I wasn’t rude, exactly, but I made sure my vehemence at not feeling as though what is my primary focus, as the mother of an autistic child, was considered. Honestly, I don’t care what caused my son’s autism, and I don’t believe he needs to be cured. He could use more assistance and support though, especially as he grows and he will eventually become an adult and I am not going to live forever. I want to know there will be somewhere he can go where he will be able to live and be happy if it turns out that he cannot live independently and be self sufficient.

    I also gave a special thank you mention to Rep. Eleanor Holmes Norton for being the only one on the committee that seemed to express and have genuine concern for adults with autism and what systems and supports are available to them. I have read other people’s responses that were sent in to the committee also and many of them mirrored my own frustration and anger at the vaccine topic still being tossed around and representatives for the real autism community were largely ignored. Hopefully they feel ashamed of their actions, but since they are politicians, I don’t think they can feel shame anymore. And they say autism causes a lack of empathy… it’s really politics that does that.

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