Friday, November 30, 2012

Congressional Autism Hearing Recap

The stated goals of yesterday's Congressional Oversight and Government Reform Full Committee Hearing: “1 in 88 Children:  A Look into the Federal Response to the Rising Rates of Autism” were to "...get a clearer picture on what is being done, what questions still need to be answered and what needs exist for those children, adults and families who live with an Autism Spectrum Disorder."

This hearing was notable for its precedent-setting inclusion of autistic representatives. Committee Chair Darrell Issa noted that as long as he heads the committee, it will stay open to autism concerns and may even try to find funding to address them. Video coverage of the entire hearing is embedded at the end of this post.

The hearing witnesses (and each's official testimony):
  • Alan Guttmacher, M.D. (testimony)
    • Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health
  • Coleen Boyle, Ph.D. (testimony)
    • Director of the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
  • Mr. Bob Wright (testimony)
    • Co-Founder, Autism Speaks
  • Mr. Scott Badesch (testimony)
    • President, Autism Society
  • Mr. Mark Blaxill (testimony)
    • Board Member, SafeMinds
  • Mr. Bradley McGarry (testimony)
    • Coordinator of the Asperger Initiative at Mercyhurst, Mercyhurst University
  • Mr. Michael John Carley (testimony)
    • Executive Director, Global and Regional Asperger Syndrome Partnership
  • Mr. Ari Ne'eman (testimony)
    • President, Autistic Self Advocacy Network
During the first part of the hearing, outgoing Rep. Dan Burton let thoroughly debunked mercury-autism and vaccine-autism causation pseudoscience theories fly, despite CDC representative Coleen Boyle's calm reiteration of actual autism facts and figures, and reminders that the CDC's 1 in 88 autism numbers point to underdiagnosis of existing autism numbers rather than a rise in autism rates. Several congressional committee members could have benefitted from reading TPGA's Mission Statement's primer on critical autism thinking & pseudoscience checklist before the hearing.

In the second part of the hearing, testimony was more varied:
  • Autism Speaks co-founder Bob Wright described his eleven year old autistic grandson Christian's regressive autism as being "...this pit. We lost a little boy we knew. It wasn't like he was a disabled person who got more disabled," and described the CDC as a passive organization. 
  • The Autism Society's Scott Badesch was interested in finding better supports and services for autistic people like his own 25-year-old son, as well as appropriate education and job opportunities, working with the CDC, and reaching out to under-served populations -- on having government services be "outcome based." 
  • Mark Blaxill from SafeMinds ably demonstrated confirmation bias, in calling autistic children "sick," making accusations of "malfeasance," flogging debunked mercury/vaccine-causation, and denying CDC evidence of autism underdiagnosis by testifying under oath that "...before 1930, the rate of autism in the world and in America was effectively zero" -- when this is true only in that the label "autism" did not exist at that time. 
  • Bradley McGarry talked about Mercyhurst University's Asperger's Initiative's work on building a foundation of self-advocacy, social skills, and academic progress -- and the need for more internships and job coaching. He describes the under-education and underemployment of autistic people as both unnecessary and "critically unfair."
  • Michael John Carley of GRASP forcibly disagreed with previous talk about a health crisis, averring that we are in a "services crisis." He talked about the need to focus on "where our greatest need lies ... in the present" rather than research, which focuses on the future. He said that most autism families do not have the proper ", interventions, and educations available to their children," and described autistic adults as "starved for housing, therapies, and employment opportunities." He emphasized the need to understand "the fiscal cost of not providing services." He also pleaded with those listening to remember that most autistic people can "read what's being written about them, and hear what's being said about them." As he said this, many audience members shook their heads in disagreement. We recommend they read TPGA's essay on The Least Dangerous Assumption.
  • The following is an excerpt from ASAN's Ari Ne'eman's official testimony. He decried the damaging rhetoric of an autism "epidemic," and focused on AAC, services, evidence-based approaches to demonstrating that autistics have always been with us, and civil rights. Mr. Ne'eman was given further opportunity to expand upon income, gender, racial and language barriers with respect to autism and disability by Rep. Davis during the second panel's Q&A session.
    "Chairman Issa, Ranking Member Cummings and esteemed members of the Committee, thank you for the invitation to speak to you today on federal policy regarding the autism spectrum. My name is Ari Ne’eman and I represent the Autistic Self Advocacy Network (ASAN), the leading national advocacy organization run by and for Autistic adults speaking for ourselves. As an Autistic person, I want to begin by thanking the committee in particular for hearing from self-advocates – that is not always a given in the autism world and I am profoundly grateful to both the majority and minority members and staff for ensuring that we are represented at this hearing about us.

    "Over the last decade, we have seen growing public attention towards the autism spectrum, in part driven by rising rates of diagnosis. Although additional public attention has provided an opportunity for greater visibility to the idea of autism, such visibility historically has not translated into attention or resources on the issues that matter most to Autistic people and our families.

    "There are a variety of reasons for this – one of the most prominent of which is the history of under-representation of adults on the autism spectrum in policy conversations about us. Additionally, one of the most important things to remember in discussing federal policy regarding autism is that the vast majority of publicly financed resources that those of us on the autism spectrum interact with carry the word disability rather than the word autism. As a result, my testimony will touch on both federal policy that is specific to autism as well as general disability policy issues, such as Medicaid, that significantly impact Autistic people and our families.

    "First, the majority of federal attention focused on autism in particular comes in the form of research funding. While we have been pleased to see an increase in federal autism research dollars over the course of the past decade, it is very important that we evaluate how we are spending that money. I am a big believer in the old maxim, “In God we trust, everyone else please bring data,” so let’s turn to the data and see what it shows us.

    "Of the approximately $217 million dollars that the National Institutes of Health (NIH) invested in autism research in 2010 (the most recent year for which data is available), only a meager 2.45% went towards improving the quality of services and supports available to Autistic people and our families. Only 1.5% went towards research that addresses the needs of Autistic adults. When compared to research on questions of causation, etiology and biology and diagnosis, the percentage of the autism research agenda focused on the actual needs of Autistic people in order to improve their quality of life is miniscule. We are pro-research, but the research agenda must be re-balanced to incorporate both causation and quality of life.

    "This matters. It matters more than I can possibly articulate, but I will try to do so, nonetheless. I remember recently visiting a service provider in Manhattan earlier this year to learn more about how we can improve disability employment outcomes for people with severe disabilities. While I was there, a non-speaking Autistic man in his mid-20s came in with his father. They were looking for some help trying to find him a job or at least something meaningful to do with his day. I asked him some questions and his father helped give responses, but it was immediately clear that his son knew exactly what I was saying, he pointed out what he was interested in, he shook his head at what he had no interest in, he raised his hands when he was excited. He had plenty to say and clearly rarely got the opportunity. I think about that young man – who probably wasn’t that much older or younger than me – often, and particularly at times like this.

    "Members of the Committee: Why can’t we do better for him? Why can’t we give him a chance to communicate more clearly, to not only sit here and testify before Congress someday but also be able to tell his supporters and friends what he wants for his life, to tell his parents that he loves them and how important they are in his life? Some people say that until we unravel the causation of autism, that is impossible. That is quite simply not the case -- Augmentative and Alternative Communication technology has existed for many years now and can empower even those of us who cannot speak to make their voices heard.
    "If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today. I am not here today to speak for every Autistic person – that’s impossible. What I am here for is to argue for every Autistic person to have the same opportunity to communicate that I have come to enjoy thanks to the support that I have been lucky enough to receive in my life."

November 29 Congressional Autism Hearing Video:

Additional hearing coverage and insights (will update as new posts pop up):
If you missed sending in your concerns to the committee beforehand, or if you have additional input for them, please note that you can still send your comments and concerns to the committee via online fax (sincere thanks to Matt Carey for the link).