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Congress To Weigh Federal Response To Autism

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(Updated: November 26, 2012 at 4:33 PM CT)

A congressional hearing on autism planned for later this week is being hailed as a once-in-a-decade milestone but it’s not without controversy.

The hearing of the U.S. House of Representatives’ Oversight and Government Reform Committee is scheduled for Thursday afternoon. Lawmakers plan to address the “federal response to the recent rise in autism spectrum disorders diagnoses,” according to materials provided by committee staffers.

In addition, the committee will also examine how government resources for autism are allocated and consider current research and treatment options.

Advocates at Autism Speaks are welcoming the hearing as a “much-needed” step, noting that the last time Congress held a similar event was in 2002. Witnesses expected to testify before the committee this week include the organization’s co-founder, Bob Wright, as well as officials from The Autism Society, the Asperger Initiative at Mercyhurst University and SafeMinds, a group which supports the idea that vaccines contribute to autism, a theory that’s widely discredited by the scientific community.

Representatives from the National Institutes of Health and the U.S. Centers for Disease Control and Prevention are also scheduled to appear.

The event faced staunch opposition, however, from self-advocates who said they were being left out of the conversation.

“The fact that in this day and age that the House majority would hold a hearing on autism and not include an autistic person in the hearing is profoundly disappointing,” said Ari Ne’eman, president of the Autistic Self Advocacy Network.

And on Monday, members of Congress appeared to acknowledge the concerns, adding two people with autism — Ne’eman and Michael John Carley of the Global and Regional Asperger Syndrome Partnership — to the list of scheduled witnesses.

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Comments (7 Responses)

  1. Therese says:

    Ari Ne’eman is not a nice man. He is only out for services for Asperger people – not the rest of us.

    The other thing bothering me is the asperger community often says they don’t like the autism label, etc. So let this hearing be for the low functioning – who cannot help themselves. (This is not to start an argument – just my opinion.)

  2. Lisa Rego says:

    I am happy that there are people with autism able to take part in this, however I hope the people with autism who are not able to speak and advocate for themselves will not be forgotten.

  3. Glen S says:

    Therese and Lisa, you make for one very good point! Individuals with Asperger syndrome often do not speak for the majority of individuals with Autism. A few are even condescending toward those who do speak for individuals with less ability to function on their own during a logical discussion. It is a shame that in an attempt to include more self-advocates we have forgotten that many others require someone to advocate on their behalf.

  4. Dr Mink says:

    I’m more amazed that they are including people from SafeMinds without including Paul Offit. Then again, this is sponsored by the party that denies science, except when it agrees with what they believe.

  5. autismUXB says:

    Safe Minds needs to be there for 2 reasons – on behalf of the families who witnessed an adverse effect from a vaccination resulting in severe digression for their child and for the simple fact that the “scientific community” discredits the vaccinne connection based on a collection of statistics and not on actual biological assessments of poisoning a developing neurological system in a young child.

  6. Whitney says:

    Actually they don’t like any labels. It quantifies a person by giving a pre-conceive notions what a they can do and cannot do under a pretense. I rather to see a more yearly event like this one with broader scope of people with autism that includes Apserger’s. I agree with Therese just because a person who functions at a different level should not be excluded. I disagree if we exclude high functioning from this hearing simply because. Right what is affecting both groups are the same factors and by working together it might change. People with Aspergers are 80% unemployment and so is with most of Austism Spectrum so we do have similar interest.

  7. autismUXB says:

    Very excellent presentation by Mark Blaxill at the November 29th hearing.

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