Monday, April 2, 2012

IACC appointees: A sick April fools joke or ???

Ironically, right around the time of April Fools day,the federal government announced the names of the new appointees to the public membership of the Interagency Autism Coordinating Committee. This is the agency that was created under the combating autism act where members of the general public, along with federal government members are appointed to give input and vote on autism policy. In the past(though I'm not certain about now) the Federal members outnumbered the public members. They voted on what they wanted, and I doubt the public members actually had much power to make meaningful contributions.

Three of the appointees' names particularly stood out for me:

1. Matthew Carey
2. John Elder Robison
3. (Last but certainly not least) Scott Robertson.

The combating autism act was designed with the intent of actually curing and eradicating autism. I'd like to discuss the incredible incongruity of appointing these three individuals to this position.

Nearly three years ago, I wrote a blog post explaining why I did not believe that members of the neurodiversity movement should be allowed to be heard by the IACC. This was in response to a post one of the three aforementioned appointees wrote.

Now in what I hope was either an early April Fools joke or a nightmare from which I'll awake tomorrow morning, it's happened. We now have three individuals from this movement who are not only being heard by the IACC but are actually on the board themselves.

Matt Carey, AKA "Sullivan", is at least a somewhat pro neurodiversity blogger who has a propensity to make numerous factual errors in posts that try to rebut those of us who have an intense dislike for the neurodiversity movement. He has gotten it wrong on special education law, gotten it wrong on whether or not Ari Ne'eman said that autism was not a disability and gotten it wrong about a certain individual who does not like ND, falsely claiming this person threatened Ne'eman with death. Carey has consistently stated the strawman that those of us who don't like neurodiversity are against civil and human rights. As this is one of their standard lines, I won't bother to comment on the absurdity of this. Carey has been very pro special ed and the IDEA law, yet apparently is against curing autism. He apparently believes the taxpayers should foot the bill for his son's disability which he is opposed to curing.

John Robison is another individual who has stated there is no need for a cure for autism. To his credit, he has acknowledged that autism is a disability that needs research for remediation. Though quite wealthy, he has accepted funding from autism speaks for his son's and Alex Plank's autism talk TV, while most persons with autism are crippled and sick and languish in poverty. He has suggested studying geek success as a legitimate scientific endeavor. He seems to either not understand that a newborn has a nearly equal chance of being a boy or a girl or comes up with some strange theory that parents of autistic children are at least four times more likely to have a son as their firstborn and then an equal chance of either sex with subsequent children. Though he has not even completed the tenth grade in school, he serves on scientific advisory boards with M.D. and Ph.D. scientists. Most notable of all, his friend, Alex Plank, whom he has helped secure funding for, has stated that autism is a good thing. So, though Robison has stated that many facets of autism are disabling and need research for remediation, I wonder if we can judge him by the company he keeps.

As I said before, last but not least is Scott Robertson, one of the top executives in the autistic self-advocacy network, second-in-command to Ari Ne'eman. Though ASAN has publically opposed the combating autism act, they apparently feel it is okay to be the beneficiaries of tax dollars paid for created out of a law that they disagree with. They have stated that curing autism (the purpose for which the combating autism act and the IACC which they now have a seat on was enacted) would be morally rephrensible. ASAN or their representatives have used murder of autistic children as a political tool, they have stated that autism and Asperger's are not disabilities, and they have implied that autistic people who are unable to hold jobs who disagree with what they are doing are welfare bums who in their words should be strangled to death and turned into cat food or taken out, lined up against a wall and be shot.

To date, not a single person on the spectrum who favors curing autism has been appointed as a public member of the IACC. Though it would seem we are the primary individuals for whom the CAA was passed by congress and signed into law by two different presidents. I wonder why Kathleen Sebelius and other powers that be, think that these individuals are better suited for the job than we are. Guess because of my disability, there are just some mysteries that I'm not sophisticated enough to understand.

7 comments:

John Elder Robison said...

Good morning Jonathan.

I’d like to offer some thoughts about your recent post:

You say:
John Robison is another individual who has stated there is no need for a cure for autism. To his credit, he has acknowledged that autism is a disability that needs research for remediation.

I have written quite extensively about our need to develop tools, treatments, and therapies to remediate all the ways in which autism can disable us. Remediation of autistic disability is the goal of most autism researchers, and certainly one objective of NIH and CDC as well. There is no conflict between that position and the mission of the IACC.

You say:
Though quite wealthy, he has accepted funding from autism speaks for his son's and Alex Plank's autism talk TV, while most persons with autism are crippled and sick and languish in poverty.

I have not accepted any money from autism speaks or anyone else for autism talk tv, though I have donated some of my own personal funds to get them going. Alex raises and manages the money himself. Whatever you may think of their work, it has been widely praised, and ATTV and Wrong Planet stands as powerful examples of autistic people who are supporting themselves and serving a social purpose at the same time.

The idea that you believe “I am wealthy” while “most persons with autism are crippled and sick and languish in poverty ” (in your opinion) is irrelevant, insulting, and degrading to the broader population.

You say,
He has suggested studying geek success as a legitimate scientific endeavor.

I stand by the wisdom of that. Scientists call geeks part of the “broader autistic phenotype;” people who display traits of autism but who are not disabled. The question of what sets them apart from the more disabled autistic population remains valid and the answers may well be instructive and useful to others on the spectrum seeking to develop careers.

You say,
Though he has not even completed the tenth grade in school, he serves on scientific advisory boards with M.D. and Ph.D. scientists.

That is true, and it shows what people can accomplish through focus and hard work. Rather than tear it down, you might take that as inspiration for your own life. If I can do that, what’s stopping you?

I stopped commenting here because of your unrelenting negativity. You say we are bad choices. Rather than criticize us, why don’t you offer up some constructive choices of your own? You’ll get farther proposing viable solutions rather than spouting constant criticism.

Telling us what you think is bad does not do much to make things better. There’s no shortage of critics in this world, and their diatribes lead to little but disillusionment and depression. Telling others what might help you has a chance of success.

jonathan said...

John Robison: On wrong planet you wrote:

I paid for them to go with my personal funds, so if anything, I personally sponsored those first videos but we did not say that when we put the credits together. Autism Speaks will reimburse some of my costs with their underwriting grant.

Now you're claiming you haven't accepted a dime from autism speaks? Which is it? If you're not fabricating the facts, then apparently autism speaks said they would reimburse some of your costs and didn't, which is it? I'm curious.

I'm not sure you read my article about your interest in studying geek success, but you offer no evidence that any of the so-called geeks have anything remotely similar to any person legitimately diagnosed as autistic.

I also invite you to read my article on undiagnosing bill gates with autism if you've not done so already.

I'm glad you were able to accomplish so much in your life in spite of having an autism spectrum disorder (as you claim to have) but that is not relevant for qualifications for serving on a scientific advisory board. Clearly, in your various writings you have shown no knowledge of scientific facts whatsoever.

The ultimate mission of the IACC is to find a cure for autism which you have stated on page 5 of your book, look me in the eye, is not needed.

The fact that autism speaks and the federal government would chose you to serve on these boards is insulting and degrading to the general population. The fact that you would help Alex Plank who has stated that the fact I have a disability, can't work or find a romantic relatinoship is a good thing is insulting and degrading to the broader population.

I believe Roger Kulp, Tom McKean, Chris Charette would all make good choices for the IACC. I would include myself, though I don't think I'd want to serve on a board where I had only token power and as a public member and be outvoted by the federal members. We (nor any other pro cure autistic for that matter) has a snow ball chance in hell of being appointed and you know that. I have written about spending money on special needs trusts for autistics on my blog. In my other writings I have suggested finding adults and others who can hopefully will their brains to science so this horrible disability can be mitigated. I have suggested research based on Harlow's rhesus monkeys as animal models for autism.

I have also proposed that autism speaksfunding jobs training programs and employ persons with autism in their organization which they have not done to date, rather than giving someone like Laurent Mottron half a million bucks.

I wish I could make something more of myself. I graduated college, I worked and contributed money to taxes in spite of being far more disabled than you. Maybe they pale in comparison to some of your accomplishments but so be it. I did the best I could over the years with what I have.
If I were more knowledgeable and if there were more viable solutions (which I doubt there are) I'd be happy to propose them. Unfortunately there are no quick fix or easy solutions to autism or problems like it.

......I'm Anonymous said...

If its any consolation, the three of these individuals are light weights and are unlikely to be persuasive in that group.

Some of the people on that committee have been fighting for the low functioning long before Robison or Robertson discovered their "autism".

Matt Carey is a goofball and only knows how to make enemies.

Foresam said...

John Robison is on the IACC because he serves their purpose of promoting false information. They exist for the sole purpose of lying to the public and wasting our time. There's no point in bothering with them except to swear at them when they ask for public input. No matter what you tell them, they pay no attention to any useful information.

Socrates said...

“most persons with autism are crippled and sick and languish in poverty”

This is very much the finding of the adult autism survey in Great Britain.

AND JER's reply

irrelevant, insulting, and degrading to the broader population

Is indeed irrelevant, insulting, and degrading to the broader population - most of whom like me, are too disabled to have completed our PhD's and live in poverty, alone save for alcohol and drugs to dull the existential angst.

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Edward Lewis said...

completely agree with Foresam.

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