Autistic Voices in Transition, Part II
Published January 06, 2009 @ 09:10PM PT
In last week's transition team meeting, the organizations TASH and The Autistic Self Advocacy Network (see ASAN's press release), along with four others, presented their top policy priorities for the coming year.
The three main topic areas as priority identified by ASAN were:
1) Support and empower autistic adults,
2) End school abuse and ensure a free and appropriate public education for every student, and
3) Balance the research agenda in support of quality of life.
The four main topic areas as priority identified by TASH were:
1) Equal educational opportunities for people with significant disabilities,
2) Protect human rights, end aversive interventions,
3) Increase employment for individuals with significant disabilities, and
4) Support community living for individuals with significant disabilities.
From the self-advocactes who are reading this post, how well do these major priority areas reflect your own priorities? What social and disability or human rights issues would you like to see considered in national policy in the coming year? What would you like brought to the attention of national disability policy leaders?
For the full text of the specific recommendations in each of these topic areas see ASAN, PDF and TASH, PDF.
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Comments (4)
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Author
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Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.
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As I see it, we need to shift resources away from the endless chase of causation and "cures", and towards addressing the issues that autistic adults face now -- and the cohort of autistic children that will be the adults of the next two decades will face, in time for their arrival into adulthood --
1. Housing and household management -- in all varieties that are appropriate and non-disempowering
2. Education (primary, secondary, post-secondary, and vocational) that presumes the competence to learn, one way or another, and that leads to the acquisition of work and life skills. (A note here about so-called "low functioning" students (most often taken to mean students who do not have expressive speech): receptive speech is almost always present even when expressive speech is not. Receptive speech, plus the ability to point (whether unassisted or with assistance), plus *literacy*, are the key ingredients needed to implement a trusted, reliable, and respected means of alternative expressive communication -- which opens the door to further education and the ability to self-advocate. Therefore, *literacy education regardless of the existence of expressive speech* is a critical element of appropriate education.)
3. Employment -- at all levels and with all skill-sets
4. Accessible and appropriate healthcare. Too often autistic people get substandard healthcare because physical ailments are swept under the rug of "it's just part of autism" or are treated with questionable "autism treatments" rather than with the legitimate medical responses that the same ailments would get in a nonautistic patient. And too often autistic people have difficulty in getting their communications with providers understood or even taken seriously.
5. Living in the community as consumer and citizen.
If you are the parent of an autistic youngster and these issues don't seem central to you now... realize that they WILL be central in another decade. The time to start laying the groundwork on them is *now*, and the best way to do that is to ally yourself with the autistic self-advocates working on these issues here and now. It's just simply *good strategy* to listen to, to connect with, and to work with adult autistic self-advocates and the organizations in which they are active, such as ASAN, TASH, and AutCom, and to seek them out within the ASA. Doing so has made a world of difference for my own son and family.
Posted by Phil Schwarz on 01/06/2009 @ 09:42PM PT
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Support and empower autistic adults is a good objective, I suppose. It's hard to get a good perspective on the needs of the civilisation when I'm struggling to escape the weight of a half-century of living as though everyone else was like me.
Yes, OK, I can get by without a carer. I'm high-functioning. But I don't understand, and I'm starting to think I never will.
Posted by Peter Davey on 01/07/2009 @ 02:05AM PT
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@Phil Schwartz, exceptionally well put comment. On your point #4, that is a topic very dear to my heart, and I hope to return to it in this space more explicitly in the future.
Posted by Dora Raymaker on 01/07/2009 @ 09:39AM PT
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@Peter Davey, do you think there's a way that the world could change so that you wouldn't have to bear that weight?
Posted by Dora Raymaker on 01/07/2009 @ 09:42AM PT
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