The Autism Corps

Published July 21, 2009 @ 12:48AM PT

Hands joining hands from http://www.consolidatedlease.com/images/joining-hands.jpg
24/7 and one-on-one.

That's the kind of care my 12-year-old son needs. One-on-one teaching at school and certainly somehow is always with him.

While he may not always need the one-on-one staff to Charlie ratio, Charlie will always need support and care, full-time. Currently Jim and i are able to provide this for Charlie. While we always have our minds turned towards the future and how we'll keep providing what he needs throughout his life, what consumes the greater part of our energy is helping Charlie in the here and now. Jim and I are able to take care of Charlie while both working full-time; we both teach college students and are able to have flexible schedules. Nonetheless, I've often had to consider not working to take care of Charlie which would help in some ways while making other things (our finances) a bit difficult.

Plenty of people are in the same boat. And that's why parents of children on the spectrum Shannon Des Roches Rosa and Jennifer Byde Myers, and self-advocates Rachel Cohen-Rottenberg and Lindsey Nebeker have started this petition to ask First Lady Michelle Obama to meet and form an "Autism Corps." Here is the petition's full text:

We, the undersigned, propose that Michelle Obama meet with Shannon Des Roches Rosa, Jennifer Byde Myers, Rachel Cohen-Rottenberg, and Lindsey Nebeker, representatives of the autism community, to discuss effective strategies for providing urgently needed direct assistance to overstressed autism families and individuals on the autism spectrum.

We believe that an Autism Corps, based on the Teach for America model, can supply trained volunteers to effect this assistance and provide four to fourteen weekly hours of one-to-one in-home support for people with autism.

We believe supporting adult autistics and autism families who have immediate needs for day-to-day assistance supersedes discussion of ongoing autism research and causation.

We believe in supporting measures that benefit all in-need children with autism, adult autistics, and autism families.

The notion of an "Autism Corps" addresses a need sounded here and all over by many in the autism community. More people trained to assist individuals on the autism spectrum means that support could be available for individuals in their homes and in their communities, in the settings that they know and are familiar with. It means that parents and others who care for autistic individuals might be able to work to provide much-needed financial resources for their families.

As a parent, I love my son unequivocally as he is, for who he is. It's a reality that he has many needs and that "just not anyone" can take care of him. I'm grateful that I can work to provide the resources to help support Charlie and provide him with all that he needs. But I know not everyone can do so and the time may come when Jim and I need help that we can't readily find.

Currently 154 people have signed the petition. Please sign this petition to ask Michelle Obama to meet and form an "Autism Corps." And if you've thoughts and concerns about the notion of an "Autism Corps," the petition's organizers are interested in hearing them---you can leave a comment via a Facebook group or on this post.

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Comments (3)

I'll leave the same comment I left on the petition:

Parents not only need a break, but our health care workers, our school systems and emergency workers also need to understand the needs of people on the autistic spectrum. Health diagnosis's are missed, educational opportunities don't happen and confrontations with law enforcement can sometimes have devastating effects. Groups like POAC NJ have just scratched the surface in educating law enforcement, schools and parents, we need more...

Posted by William Kuhles on 07/21/2009 @ 05:53AM PT
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I don't know if this is relevant or not, not having yet seen the specific wording of Rep. Doyle's amendment, but this came down the wires this AM as part of an Autism Votes action alert,

"...Last night, The House Energy and Commerce Committee passed an autism amendment offered by Congressman Mike Doyle (D-PA), Chairman of the Congressional Autism Caucus and member of the House Energy and Commerce Committee, to H.R. 3200, the America's Affordable Health Choices Act of 2009 - the House health care reform bill that is currently undergoing markup in the Energy and Commerce Committee. His amendment would set up national training initiatives on autism..."

I'll see what I can find out about what these "national training initiatives" are. Just an FYI.

Posted by Regina Claypool-Frey on 07/21/2009 @ 10:57AM PT
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Perhaps a hair OT, but -- given the long-standing calls on this blog for unity between various concerns that have been "factionalized" regarding autism -- I delight in noticing the "inclusiveness" of the language of the petition, using both person-first and identity-noun "forms" of nomenclature (children with autism, adult autistics). Great. And the concept is even more great. Off to sign the petition...

Posted by Andrew Dell'Antonio on 07/22/2009 @ 07:05PM PT
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Author

Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.