Wednesday, December 17, 2008

Autism Advocates Scheduled to Meet with Obama Transition Team

A small group of autism advocates are scheduled next week to discuss disability and health care policy with President-elect Barack Obama's transition team, according to one of the advocates invited to the event.

Ari Ne'eman, president of the non-profit organization Autistic Self Advocacy Network (ASAN), has communicated with other advocates for people with autism that he was invited to speak with members of Obama's team, and said he seeks input from others in the community. In an e-mail message distributed by The Autism Acceptance Project, Ne'eman, wrote:

Early next week, the Autistic Self-Advocacy Network (ASAN) has been invited to give input to the Office of the President-elect at two meetings relating to disability policy in the upcoming administration. The first meeting will focus on autism policy issues specifically while the second will focus on health care policy from the disability perspective. The meetings will be small, intimate and include representatives from several other autism and/or disability organizations as well.

I'd like to take this opportunity to invite people to give their thoughts as to what issues matter to them in relation to Autism Policy and Health Care Policy in the upcoming administration. We've been asked to take 2-3 policy priorities into the first meeting and will want to represent some of the specific needs of autistic self-advocates in the second. As an organization that seeks to represent the needs of the community of autistic people and to fight for the rights of ourselves, our families and our supporters, we want to hear from you.
The Autistic Self Advocacy Network is based in Washington, D.C., and was founded by Ne'eman, who explains in his website biography that he's a student at the University of Maryland-Baltimore County. Ne'eman, who has been diagnosed with Asperger's, runs this group along with others with autism spectrum disorders. The group's website notes: "ASAN's public policy initiatives involve advocating for greater support and understanding for adults and children on the autism spectrum."

What priorities would you advocate? Here's the contact information for Ari Ne'eman via e-mail: aneeman@autisticadvocacy.org.

Also see:

Autism Society Urges Families to Voice Concerns to Obama's Transition Team

5 comments:

Autism Reality NB said...

I would be advocating some things that Mr Ne'eman will not be advocating: (1) funds for ABA intervention for autistic children (2) funds for research into effective treatment and cures for autstic people.

Cale said...

I'm not sure that's quite accurate, Autism Reality. Mr. Ne'eman has expressed in the past an interest in Behavioral-Psych based therapy (basically an ABA-type approach) provided that it is neurodiversity friendly (I.e. does not aim to remove the autistic attributes from the child, but rather helps the child to learn meaningful skills that will help him grow and function as an individual, albeit an autistic one). I think the blanket statement that Ari and ASAN are against ABA is thus inaccurate.

Ari Ne'eman said...

That would be correct, Cale. We have a number of concerns about ABA, but to say we're against it would be inaccurate (though neither do we buy into the pseudo-scientific claim that it is the only scientifically validated methodology).

Currently, we're trying to ensure that public policy towards it excludes any methodology (ABA or otherwise) that includes aversive interventions and we're pondering ways to work with the various behaviorist practitioners that have approached us in agreement with our ideas, just as we work with a wide variety of SLP and OT practitioners who share a commitment to methodologies focusing on skill development (i.e: communication, etc.) rather than normalization.

Michael Goldberg said...

I wrote to Ari and suggested that when advocates meet with Obama's team they emphasize the importance of full funding the Americans with Disabilities Education Act. I was heartened when he replied with enthusiastic agreement.
So I want to add two things to this conversation:
1.) ABA is described by the American Academy of Pediatrics, which reviewed the research literature, as a key component for helping children make positive gains in their behavior and learning challenges. It is vital.
Done properly, with supervision and by trained behavior therapists, ABA does not include "aversive" therapies, from my understanding and experience. I would encourage the BCBAs in the audience to add their voices.
2.) All that said, we in the autism community -- which I would define as people with autism and their families -- need to find areas, subjects and issues upon which we can find agreement. There has to be common ground because there's too much at stake. So I take encouragement from the e-mail conversation I had with Ari, and from his participating in the dialog here. Thanks. Michael

Sharon daVanport said...

We are organizing a team in Nebraska as well. So much to do, right! Keep us posted.

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