UPDATE: I have tweaked the argument below to center on the Teach for America Model rather than the Peace Corps model, and created a petition which I encourage you to sign.
If I had an opportunity to discuss autism with First Lady Michelle Obama, here's what I'd want to talk about:
We need an Autism Corps, modeled after the Peace Corps and AmeriCorps.
There are hundreds of thousands of children and adults with autism diagnoses who need day-to-day support now, and their ranks are swelling. There aren't enough trained professionals to serve them all, and even if there were, many families can't afford them. I can't imagine how those families go it alone, managing their lives without external support -- especially those whose children have moderate to severe diagnoses. Mine is one of the luckiest autism families around; we have access to and funding for the highest quality services, yet we still have plenty of scorched-earth days.
Michelle and Barack Obama have launched a campaign to encourage service, while millions of energetic and idealistic young adults want to work but can't find jobs, and our president has said that he "...believes we must work to guarantee that Americans with ASD [autism spectrum disorder] can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD."
Let's put that all together. Let's create a federally-funded organization dedicated to training volunteers to work with kids and adults with autism. Autism Corps workers could help individuals with autism gain skills and independence, and have recreation opportunities. They could give their families -- all autism families, not just those who can pay for or know how to get services -- some sorely-needed respite. They could make it possible for parents who would otherwise be full-time caretakers to work outside the home. They could supply balance to families who never thought they'd find it. They could make a real difference for families approaching the breaking point.
This is not to downplay the importance of autism discussion, approaches, and research. But those are already on White House and Federal radars. "The Autism Society has invited First Lady Michelle Obama to participate in [their annual conference's] July 24 keynote panel on public policy and autism." This is good news for autism awaress in general, and I hope the panel will be recorded. President Obama has welcomed science back to the White House, which hopefully translates into good news for evidenced-based autism treatments. And the US Dept of Health & Human Resources has publicly released its Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research, which bodes well for future autism research, and answers.
While autism and people with autism shouldn't be demonized, we need to be frank: having a child with autism is more stress than some families can handle. Those families have needs that take precedence over panels and promises and research; they need help getting through the day. They need an Autism Corps. I would hope our First Lady (and her husband) could both recognize and support this idea.
It's important to remember that autistic adults don't just need skills, independence, and recreational opportunities. There are many of us who have gone undiagnosed until well into our lives, and who are now experiencing burnout after a lifetime of being what the world would call successful (college, grad school, house, kids, career, etc.)ReplyDelete
I am 51 years old, only recently diagnosed, and unable to do many of the things I once did. After a successful career, I can no longer work. Being out and among people for more than a half hour is very disorienting. My husband does the food shopping and most of the cooking. This kind of burnout is not uncommon for autistic adults in mid-life, especially for those of us who became quite adept at emulating our neuro-typical peers, but it is very difficult for us to get social services of any kind, even though many of us need the support. I hope that we don't continue to be the invisible "sink or swim" generation.
Rachel, thank you for commenting, and adding another dimension to the arguments for support above.ReplyDelete
I am also enjoying reading your site. My son is not conversational (not yet? We'll see; he's amazing and always suprises us) so I crave insights like yours. Thank you.
Hey Squid, check this out:ReplyDelete
rude and written from 17 y.o. boy's perspective, but otherwise spot on.
Anonymous, I did read that -- after I wrote the extended review of Mother Warriors below -- and agree that it hits many of the same points, but a bit more, erm, broadly, shall we say.ReplyDelete
Cracked can get away with that kind of shredding. The writer (for a moment I thought it was Danny O'Brien of EFF.org, which suprised me not a little) doesn't seem to have a stake in the autism community.
I try to address JM's behavior and actions, not her person. It's an ongoing struggle; she leaves the door so wide open!
I like your Autism Corps idea. We definitely need many autism voices that are positive and encourage involvement. Are you gonna write Michele?ReplyDelete
Also is "anonymous" all the same person or different people leaving anonymous msgs? :o)
Anonymous is one option for non-Blogger-member commenters. You can leave a name, but it's another step, though some "anonymous" folks do leave their names or initials at the bottom of the actual comment.ReplyDelete
The option also allows those who aren't confident enough to attach their name to their opinion to say whatever they like.
I personally think this is genius. I've thought for years that this is one growth area for jobs: now to get the word out to young grad psych students, ed students, etc.ReplyDelete
Thank you for mentioning "adults" in the discussion . I only hope it includes the adults who already "are" and not just the children who will become adults some day . It does feel at times that we have been written off as a lost cause that will just drain limited resources .ReplyDelete
I think this untrue for two reasons..
One is that I think only in studying how adults with AS have managed to survive this long, can we really understand the how effective any form of intervention might be .
The other is that I believe that there are currently many adult AS who have some thing to offer society if only given a bit of help and guidance in organizing themselves .
My BF has MS, another neurological condition that can effect cognition and senses and he had a social worker to help him to "organize" . As an adult with AS, this sort of resource would be invaluable to me .
It would also have been helpful if I had access to a testing of abilities and disabilities that are often co-morbids with AS and can severely effect over all function . A label of AS without an understanding of the "whole person" is useless in evaluating needs .