Monday, October 4, 2010

When I Get Older

When I get older,
I will be stronger
They'll call me freedom
Just like a waving flag...

-- Theme Song from 2010 World Cup, performed by K'naan

At Rose's school, the second and third graders are doing an Africa-themed social studies unit and concert. One of the songs she has introduced to us is the South Africa World Cup theme song from this past summer, a song called Waving Flag:

When I get older, I will be stronger.

In the mouths of second and third graders, it's an encouraging note for the future.

Sung by adults, it's encouraging in another way (with maybe just a hint of "when I am an old woman, I shall wear purple!")

I want this encouragement to apply to both my daughters.

The other Friday, I had the opportunity to hear a brown-bag presentation by Dr. Paul Shattuck, autism researcher and professor of social work at Washington University of St. Louis. He's on the cutting edge of a new trend in autism research -- a trend that recognizes how very much autism-research-attention has been devoted to children and how very little to adults.

He's been working with data from a U.S. Department of Education study called the National Longitudinal Transition Study 2. This study has been following a huge sample of young people receiving special education services, starting with youth age 13-16 in the year 2000. They followed the same youth for ten years, with five sets of interviews at 2-year intervals. The interviews (with parents/guardians and with youth who are able to interview) explore special education experiences and the students' transition into post-school, adult life. There are over 900 youth with autism in the survey.

Dr. Shattuck and his team have been analyzing data from the fourth set of interviews, from 2007 when the youth were 20-23 years old.

A couple of findings in his presentation stood out for me.

One was the comparison of services received before vs. after high-school graduation. As one might guess, there's a substantial change and drop-off. Most dramatic: speech services. Fully 75% of the sample with autism received speech services in high school. Of those who had transitioned into adulthood? Sudden drop to 9%. Because magically at age 21 the need for speech therapy goes away, right? Yeah, not so much. It's all about the service system -- schools provide the therapy, insurance and adult services don't. (The way autism insurance is written in Wisconsin right now, speech therapy IS covered for adults, by the way. I wonder how many will be able to take advantage of it.)

The other big one: Dr. Shattuck looked at how many of the post-high-school contingent were completely disengaged -- that is, no employment, no career counseling, volunteer work, education, vocational training, outside commitments, nothing.

That number was 20%. The only other subgroup in the study with a slightly higher number on that score were the young adults in the "mental retardation" category.

The disengagement level was hugely associated with family income level. Only 3% of the young adult autists from families making over $75,000 were totally disengaged. In families making under $25,000, the number was 36%.

It makes me wonder a lot of things. One thing I wonder is what exactly it would take to bridge the engagement inequities -- which of course exist amid so many other inequities.

I also wonder... what's the ideal? Surely the appropriate engagement level varies from one person to another. I don't suppose total disengagement can be spun as a good thing, although there are probably hermits and mystics throughout history who might disagree. But I'm guessing that there are as many forms of ideal as there are adults with autism.

I also wonder what the engagement level was for those who didn't fall into that totally-disengaged category. How many have just one small lifeline into the outside world, for example, versus those with multiple means of engagement?

I also wonder what this survey would look like with 30 year olds. Or 40 year olds. Or beyond.

I also wonder how different / better / worse things will be for youths with autism who are ages 13-16 in the year 2010.

And finally, I wonder what will be the outcome of something else that Dr. Shattuck noted. He spoke of the valiant lobbying efforts of the many families who helped drive the cause-and-cure research that has been where the money and effort has poured -- and pointed out that many of these parents now have kids in their late teens. He sees some of these people turning their well-honed talents to lobbying for adult services. A trend worth watching -- and worth supporting / joining.

I hope for all of us that we will continue to find our strengths as we get older.


Professor Mother said...

Adult services for ALL areas of disbaility are shocking- absolutely dismal. It's something that makes my heart hurt- just look at Susan Senator's fight for her son and his home...

I keep hoping that this crisis of autism will continue to move up as children age up. That the drive for services continues to move along with the large numbers as they age.

Thank you for highlighting this...

Anonymous said...

This post is only one reason why your blog-presence is so important to the community at large. Through you the work of others like Dr. Shattuck is spread and used to better the services for people on the spectrum. I am nothing but encouraged to learn that this study exists!

I want to dissect just one part in this comment (so as not to wear out my welcome). Tracing the drop-off of services at the end of HS backwards-is part of the generational changes implied by Dr. Shattuck (and you). "He sees some of these people turning their well-honed talents to lobbying for adult services."

Parents who were in search of the 'educational cure' early on - who insisted on academics over functional learning have 20-20 hindsight perspective. Will they rise to the occasion and mentor younger parents toward longer-term outcomes? The emphasis on inclusion and feeling socially equal has not resulted in preparedness for life after school.

See the video by Dr. Grandin and recommended in my post "Veracity". She was most adamant about this very point: guiding young autistics toward meaningful employment. She said her work is her identity.