Friday, November 30, 2012

Speaking About #Autism- Rising Numbers and Funding

Yesterday was the House Committee Oversight and Government Reform  on C-Span discuss the riding autism numbers, and funding. I was deeply saddened by 70% of what was discussed and quite shocked at the outdated attitudes our government holds about autism.  I saw  many of speakers liken us to AIDs, cancer and repetitively call autism a disease.

There was some good testimony given by a few speakers. Dr. Alan Guttmacher, MD (Director, Eunice Kennedy Shriver National Institute of Child Health and Human DevelopmentNational Institutes of Health)
did a very nice job speaking about how we need to focus on the needs of people with autism now. He mentioned very specific things that can be done,as well as organizations that have made a difference in the lives of autistic people and their families, including those that are run by and for autistic people.


I found Dr. Coleen A.Boyle PhD.   (Director of the National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention) to have also focused more on the needs for early identification and meeting the needs of autistic people living today.  I do wish her wording would have been more inclusive to those of us that are not children, but when listening to the other testimony given that oversight almost seems too arbitrary to mention. I did not envy her position at all, as she was met with fierce hostility during Q&A. At times, I could hear her voice quiver as she attempted to answer nonsensical questions that were based on huge straw men constructed by other speakers that saw her as the embodiment of their conspiracy theories on the cause of autism.

Not surprisingly, Mr. Bob Wright ( Co-Founder Autism Speaks) had some pretty harsh rhetoric and comparisons of autistic people to diseases and some hinting at us being a burden. However. suprisingly he did mention some good things as well. Early detection and intervention were two.  Some others were the basic understanding that autistic children grow up and need housing, jobs, education and care. That was new for Autism Speaks. They have a long history (and I'm sure still are) of denying autistic adults the right to be part of their organization in a meaningful way, or even acknowledge us much at all. So, to hear him use his very limited time speaking about this very important part of autism funding was a positive. I won't be endorsing A.S. anytime soon, but I think credit is due to them this time for that matter.

Speaking for The Autism Society was Mr. Scott Badesch.  http://oversight.house.gov/wp-content/uploads/2012/11/Badesch-Testimony.pdf  (president of ASA) delivered, what I thought to be, excellent testimony that really spoke to what I wanted to have represented as a mother of autistic children, as well as an adult with Asperger's.  I really appreciated the to the point, no nonsense way he spoke. He didn't blame, point fingers or get rude. He presented his case well. I also appreciated the fact that ASA just 6 years ago would not have understood or have acknowledged the needs of adults of the spectrum.  I remember when I arrived into the autism world just 7 years ago. There were autistic self advocates trying to get ASA to listen to and acknowledge them. It was through their hard work, and persistence that we have moved forward in autism advocacy to where we are today.

Mr. Mark Blaxill,    (SafeMinds-Board member) spoke only about the prevention of autism due to vaccines and really had little to add, IMO. The vaccine issue has been looked at ad nauseum and discredited. I didn't appreciate being called poisoned or the speading of misinformation this type of testimony spreads.

There was also testimony given by Mr. Bradley McGarry http://oversight.house.gov/wp-content/uploads/2012/11/McGarry-Testimony-Bio-TnT.pdf  Coordinator of the Asperger Initiative at MercyhurstMercyhurst University. He spoke about the need for funding in the way of secondary education and living opportunities for adults on the spectrum. A very important topic and one in desperate need for funding.

Last, but not least we have the two autistic representatives testimony, Mr. Michael John Carley (Executive Director Global & Regional Asperger Syndrome Partnership) and Mr. Ari Ne'eman (President Autistic Self Advocacy Network). I urge you to read their full testimony- http://oversight.house.gov/wp-content/uploads/2012/11/Carley-Testimony-Bio-TNT.pdf and  I could have stood up and cheered when Mr. Carley got to the part about language. I thought if nothing else was said, that needed to be. Even though you would not know it by reading the testimony given, if one were to watch the first link I provided you will see that the Q&A was a long drawn out chit chat about vaccines and diet and all sorts of other unproven theories. When grilled, the CDC spokesperson was polite, as was others about the fact that that has been looked into and they are now wasting time and money discussing it. Not Mr. Carley, who got right to the matter with quick, on the spot truth that people with autism are known for. He was not rude, but was matter of fact.

What I thought WAS rude, was the fact that when Mr. Carley  http://oversight.house.gov/wp-content/uploads/2012/11/Carley-Testimony-Bio-TNT.pdf  and Mr. Ne'eman  http://oversight.house.gov/wp-content/uploads/2012/11/Neeman-Testimony-and-TnT.pdf were giving their testimony some of the people sitting behind them thought it necessary to act as if they were children. There was audible sighing, eye rolling, head shaking and all sorts of other movements and expressions that was just not inappropriate, but audacious. I thought it odd that we are often the ones accused of being socially inappropriate, rigid, or rude yet these supposedly typical people behave this way when autistic people speak.

So, in closing I would like to most of all extend my appreciation to Mr. Ne'eman and Mr. Carley for their advocacy efforts on behalf of myself and my boys.  It's those efforts that change things for the better and I am grateful.  Thank you.

8 comments:

  1. As I often do, I've made a list-post of responses, including this one. I will keep adding to it as the days go by

    http://lizditz.typepad.com/i_speak_of_dreams/2012/11/historic-congressional-autism-hearings-november-29-2012-1.html

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  2. Here's mine: http://paulacdurbinwestbyautisticblog.blogspot.com/2012/11/burden-burden-burden-oversight.html

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  3. Thank you for a great wrap-up post. I watched most of the hearing and had much the same reactions that you did. Mr. Carley and Mr. Ne'eman were fantastic. They (and you and all of the other adult advocates) make me proud to be a fellow autistic.

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  4. Great wrap up post - I wasn't able to catch the hearing and hoped to catch as much of it as possible online but I'm glad to read a good accounting beforehand. (even if it makes me want to groan!)

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    1. Thanks for stopping by and commenting! There was a lot of groan-worthy moments, that's for sure! There was also some awe moments, too. I went back and tried to write from transcript, and not on emotion, because I felt it was important to factually present the entire meeting, not just let the bad parts overshadow the whole thing.

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