the hearing

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C-Span’s Coverage Of Yesterday’s Congressional Hearing On The Federal Response To The Rising Rates Of Autism

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“It’s an ethical mistake whenever we sacrifice the possible in the name of the probable. As national nonprofits, like government so far, we too have failed to lead. Our centrists have frequently been too hesitant, but more damaging are the militants on opposite ends of the controversies who have pandered to their members’ anger, anxiety or depression with alarmist rhetoric, misinformation, fight talk, and all this encouraging the search for a bad guy — somebody to blame — thereby pouring gasoline on the fires of the people who are looking to us for leadership instead of helping them with messages of acceptance, respect, openness to a path that may be different from what was expected, and helping them get the services they need.”

Michael John Carley GRASP

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“I’d like to begin with a story. Earlier this year I was visiting a service provider in New York and I happened to meet a young man my age — we’ll call him Joe. And Joe is autistic like me. But unlike me, Joe doesn’t speak. He had come in with his father to try and find a job and I had the chance to sit down with him and his dad and ask some questions. And Joe, despite not speaking, found ways to be very actively involved in that conversation. He pointed at what he was interested in, shook his head at what he wasn’t. He had plenty to say and few people had ever bothered to pay attention. No one had ever given Joe the simple support of a communication device. That technology exists — it has for years; we just don’t invest in it. I think about Joe a lot at times like this because the current autism research agenda largely ignores his needs.”

Ari Ne’eman ASAN

Ed note: That was Ari’s opening salvo.

I took the time to transcribe it for a reason.

There’s a desperate misperception in the autism community — I’d go so far as to call it a paralyzing fear in some corners — that so-called ‘high-functioning’ self-advocates (a term which I abhor, but which,  for the specific purpose of this discussion should be read as referring to people who are verbal, articulate and able to effectively and eloquently present their case in Washington) speak only for those like themselves. That they can’t possibly understand nor empathize with (yeah, I said it) the needs of those more severely impacted by autism. That their speaking up for their themselves and their needs will leave those with different, and at times more exigent, needs behind. 

But that was Ari’s OPENING. It was the FIRST thing he said when he had the opportunity to speak to those in a position to affect change.

And then this was one of the last …

“I’m not here to speak for all autistic people; that’s impossible. But I am here to speak for the right of every autistic person to get the support they need to speak for themselves …”

Amen, Ari and Michael John.

Amen.

And thank you. 

On behalf of my daughter, on behalf of our community, on behalf of all of us as a society who have to do better at caring for and respecting one another …

Thank you.

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Ed note: Any errors in transcription are unintentional. Please point them out if you find them. 

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16 thoughts on “the hearing

  1. Amen in deed! I did feel a great sense of hope watching these but I have to admit, it bothered the heck out of me that the Congressmen kept referring to Autism as a Disease and a burden to society!!! So much further we have to go!

  2. I wish I had the time to listen to them speak. I listened to the doctors from the NIH (who worked at the medical school for a long time in my hometown!) and the CDC and had to restrain myself from throwing my computer out the window. I felt that the US Reps TOTALLY focused on the wrong issues (vaccines, vaccines, and vaccines) and at times were rude and hostile to the physicians. It made my blood boil. I know it is controversial in some crowds to say but I wish that they would move past the vaccine question. Yes, there needs to be research on the causes of autism. Yes, there should be research for a so-called cure. But honestly, the big BIG problem for families, like many of us, is access to resources for our children, whether they are 4 years old or 22 years old. I applaud Ari and Michael John for using their voices so powerfully. I hope in all the bizarreness of that hearing, the Representatives thought long and hard about what those two men said.

  3. It is so interesting to me to see the different things we all liked. I personally wanted to throw my computer thru the window when the Aspie Dad and Ari were talking. I was RELIEVED and weeping with joy that there were real questions about environmental triggers and the concept of vaccines being one of the potential causes. It may not apply to your kids, but mine is a documented (yes, by an MD) vaccine regression. Yes, services are an issue too, but if there’s a way to find the environmental trigger for some if not many children… then the questions have to be asked and answered.

    that all said, Jess – you are one of my heroes for promoting civil discourse between the “sides” of the autism community.

    • Joy, I think both are important — looking at causation and the role of environmental triggers is vital, but so too is supporting our children now and as they grow into adulthood. Those efforts need not be mutually exclusive. And as Ari pointed out, the portion of the budget that actually goes toward study of supports for our aging population is currently negligible.

      On another note, thank you for your kind words. They mean everything to me as I refuse to give up on the notion that we can’t all respect one another’s perspectives and work together toward our common goals.

      Warmly,

      Jess

      P.S. The ‘Aspie Dad’ is named Michael John Carley and he runs GRASP, one of the largest self-advocacy groups in the country.

      • I don’t disagree re services, I really don’t – we’ve been on the waiting list now for a medicaid waiver for 4 years with no end in sight and my insurance quit paying for all therapies related to a dx of autism the day my son turned 7. I’m totally there with you

        I do happen to think that there’s a massive difference in the kids (and adults) on the aspergers side of the equation and the regressive autism side of the equation – and its not fair to either to lump them together. I am willing to be money that Mr Carley has never clean the crap off the couch from a 7 year olds diaper blow out… or held his child while he was doubled over in agony, beating is hands against his ears after a bite of wheat – or watched their 3 year old who was speaking in sentences lose that ability and completely withdraw from the world over a matter of a few weeks. Not if his biggest concern is get these kids some self esteem support and appropriate job training. He – and many other asperger folks – are Light years away from the reality of day to day life on the other side of the spectrum. I would give my life to be able to JUST be worried about my son’s self esteem. Instead I worry about having to have him declared legally a child the day he turns 18.

      • And I do not, as I know you’ve heard me say time and again, take those differences in the nature of needs lightly, nor, I’m betting, does Michael John. (And I know that Ari does not.)

        But again, I don’t think his pointing out the fact that the language that we use and the approach that we take to discourse can have an affect on self-esteem in an already extremely vulnerable population – detracts from getting your son what he so desperately needs (and what, I would argue was, at least in part, Ari was fighting for along with the others).

        As for lumping us all together, well, that’s a function of the shared diagnosis, not the political process or advocacy efforts. As I’ve also said ad nauseum, the single label across such a varied spectrum is a farce. But it is what it is. Until we break down all the separate autisms into their own unique categories, we’re all operating under the same umbrella. We’ve got to figure out how to stay dry under here together.

  4. I do believe that within his next term, President Obama should pass more comprehensive autism reform legislation in terms of improving health care and social services for people on the spectrum. Ari seemed pretty calm during the C-SPAN interview. He is very critical of Autism Speaks and feels that their budget only gives a small percentage to funding autism services.

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