First Autistic Presidential Appointee Speaks Out

7 Oct

Wired Magazine has an interview with Ari Ne’eman, Exclusive: First Autistic Presidential Appointee Speaks Out. Mr. Ne’eman has been appointed by the Obama administration to to positions: a seat on the Interagency Autism Coordinating Committee (IACC) and a seat on the National Council on Disability (NCD).

The author of the Wired piece, Steve Silberman, also blogs at PLoS. His piece there is No More Pity: The First Openly Autistic White House Appointee Speaks Out.

The Wired piece does touch on the opposition to Mr. Ne’eman’s appointment. I am grateful that this an other side issues are also met with a real discussion of what Mr. Ne’eman’s views are. I wish there even more of that discussion. Here is a small sample:

Very few of us wake up in the morning and think, “Have they developed a proper mouse model for autism yet?” Instead, autistic people and their parents worry about finding the educational and support services that they need.

As a parent, I appreciated this question and answer:

Wired.com: What advice would you give to neurotypical people who want to become effective allies of the autistic community?

Ne’eman: At the political level, watch where your money is going. There are a lot of well-meaning people who think they’re helping us by donating to Autism Speaks or other groups looking for a cure. It would be better for people to get involved in their local communities and ask tough questions like, “Is my school inclusive? Is my workplace willing to hire autistic people and other people with disabilities?”

Given Mr. Ne’eman’s recent appointments, I felt this was probably the key question of the interview:

Wired.com: What do you hope to accomplish in Washington?

Ne’eman: All across the country, we have hundreds of thousands of people on waiting lists for access to community services. People with disabilities don’t have the support we need to live independently, be employed, and participate in civic life. Instead, because of a bias in the way Medicaid is structured, many of us are segregated in institutions, which offer a much lower quality of life to disabled people at the same time that it works out to be much more expensive. It’s easier to get states to pay for an institution than to get them to allow people to access services in their homes. Making community services more accessible would be a huge game changer for all kinds of people with disabilities.

Passing one particular piece of legislation — the Community Choice Act — would accomplish that. The Community Choice Act would make it so that states would be required to pay for supports and services at home or in the community, but it would actually save money, because institutional placements are very expensive. There’s no reason not to do this.

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10 Responses to “First Autistic Presidential Appointee Speaks Out”

  1. Sullivan October 7, 2010 at 21:04 #

    I have to say that I find the title of the Wired piece “First Autistic Presidential Appointee Speaks Out” to be likely inaccurate.

    My strong suspicion is that there have been autistic appointees somewhere in the 200+ year history of the presidency. I wouldn’t even be surprised if there have been appointees in recent enough history to have been formally diagnosed. I used the title here anyway as I tend to do when referencing a paper or article.

  2. Steve Silberman October 7, 2010 at 23:52 #

    Sullivan, you’re undoubtedly correct, but I hope your reading of the piece did not stop with the headline. The word “openly” was dropped from the headline for space reasons.

    • Sullivan October 7, 2010 at 23:58 #

      Steve Silberman,

      thanks for taking the time to comment. I’m glad for the correction. I did read the story, but I admit I glossed passed the “openly autistic” statement in the piece.

  3. Steve Silberman October 8, 2010 at 00:21 #

    Thanks for reading.

  4. vmgillen October 8, 2010 at 18:53 #

    “openly” autistic? Does this imply that others are in the closet? Do they know they’re in the closet? do they care? Is the door locked, is the light on?

    I am confused, as usual, when reconciling this guy and my own experiences…

    He speaks.
    He advocates for others – not just himself.
    He has a sense of self.

    I wish we could get rid of the gatekeepers and their labels…

  5. Steve Silberman October 8, 2010 at 18:59 #

    It does imply that, yes.

    What “gatekeepers” are operating here?

  6. vmgillen October 8, 2010 at 20:30 #

    The “gate keepers” control definitions/diagnoses: the labels, in other words; they control access to services, and define public perception. And they annoy the bejeesus out of me! The APA has no business having ANY say in things relating to Autism; their collective background is analytical/cognitive – until they discovered the ASD cash cow.

    People with Downs syndrome should not have to seek “dual diagnosis” for behaviour intervention. Teachers should not be surprised when presented with an ASD student who is not even close to what s/he was trained to work with… etc. Think about it: a whole segment of society gets paid to define a whole segment of society so other people can be paid to work with that population… it is wretched.

    This gatekeeper -the APA – has decided to paint the ASD Dx with a very broad brush – thus improving their cash flow position? which allows Ne’eman to be the “voice” of autism (reality dissonance: a voice? the Secret Service lets him in the White House without 2:1 direct care staff?) The gatekeepers have managed to sow acrid dissension in the ranks, which doesn’t help anyone at all – except, of course, the gatekeepers (toll booth analogy comes to mind here: ka-ching!)

  7. passionlessDrone October 8, 2010 at 21:09 #

    Hi vmgillen –

    “openly” autistic? Does this imply that others are in the closet? Do they know they’re in the closet? do they care? Is the door locked, is the light on?

    Indeed. My son is openly autistic too; only he doesn’t know it. Anyone who is aware enough to know that they have something to hide, or understands the concept of hiding a condition is qualitatively light years different than my son. All of this opining for services is great, but I’ve never been able to get anyone to explain to me what ‘services’ are going to be meaningful for a person who does not understand the concepts of more versus less, red versus green, much less something like money exchanged for services.

    It would be better for people to get involved in their local communities and ask tough questions like, “Is my school inclusive? Is my workplace willing to hire autistic people and other people with disabilities?”

    It is completely, absolutely unfair to put my son in a classroom with children without autism. He cannot speak. He does not appear to understand anything requiring abstract thought. If my school were inclusive, they would be doing a grave disservice to the other children, and indeed, to my son.

    That are not tough questions, they are dumb questions; largely born out of a lack of understanding of the differences between someone who understands the concept of a Presidential appointment, and someone who does not understand the concept of yesterday, today, or tomorrow.

    People with disabilities don’t have the support we need to live independently, be employed, and participate in civic life.

    How do you participate in civic life if you have no concept of civics? How do you gain a job if you have no concept of the exchange of money for goods? How do you hope anyone could live independently without an understandings of these concepts? No matter how much nuanced wordsmithing Ari engages in, at the end of the day, if he is successful, we will abandon looking for causes of autism, but have nothing to show for the people most seriously affected. That is dangerous territory.

    How about this for a compromise; if you want to lobby against causation research and looking for a cure thats fine, but you don’t get to simultaneously complain about a lack of services or supports.

    – pD

  8. Navi October 9, 2010 at 10:44 #

    with the right supports someone like your son can. a speaker for our local community mental health took over care of her brother. with the right supports he has his own apartment, and a job. Included in these supports are 24 hr aids. he cannot talk. Granted, his sister knows how to get him the supports available. Most loved caregivers of the less independent autistics don’t. This is what Ari wants to change. he wants to make those services accessible to more people.

    I also know two people with Downs Syndrome. They live with their parents, but both hold down a job. This is also participating in civic life.

    He doesn’t lobby against causation research. He lobbies against causation research that goes no where. While loads of money has been poored into determining no link between vaccines and autism, there has been little research on the connection between seizure disorders, despite the 40% incidence of clinical comorbidity. (As in I work for a University library with a huge number of peer reviewed electronic resources and can’t find any)

    While genetic research will help us possibly develop medications and other treatments for the more disabling aspects of autism, it is not going to help the autistic people living now. There are also organizations other than Autism Speaks, that donate money to causation research, such as the Autism Science Foundation http://www.autismsciencefoundation.org/

    He is asking people to pay attention where their money is going, rather than lobbying against causation research. Because right now, all the money is going into causation research, and little is helping those living now. It would be like searching for a cure for cancer (although I hate the analogy) but not treating those living with the disease. At least autistics won’t die off without treatment, but they will live less fulfilling lives. And that’s what I am sure all of us parents with nonverbal children want for our children. I will do what I can to help my son progress as far as he can, but I also want him to have the opportunity to have as much a place in society as his sisters.

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