November 14, 2009
Town Hall Meeting Focuses on Needs of Adults with Autism
By Julius Karash
How can we map out better futures for adults with autism? An initiative by Advancing Adults with Autism brought together 1,000 folks at 16 satellite sites as part of a national townhall meeting to discuss the issue.
There were 66 of us at the Kauffman Foundation Conference Center in Kansas City, Mo. The event in Kansas City was hosted by the Kansas Center for Autism Research and Training (K-CART), in conjunction with Children’s Mercy Hospital and Clinics and the Bi-State Autism Initiative.

Julius Karash
I attended because of my concerns for my 23-year-old daughter who has high-functioning autism/Asperger syndrome.
It is estimated that 1.5 million Americans have autism and that one in every 100 U.S. children is diagnosed with the disorder.
It’s hard enough to get autistic kids the services they need as kids. Just ask all the angry, frustrated parents after they’ve gone through their latest I.E.P. meeting at school.
But what happens when autistic kids become adults with adult needs? Things like job training, transportation, social connections with adults their own age?
In 2008 the University of Miami/Nova Southeastern University studied 200 families of adults with autism. It was found that only 19 percent of the autistic individuals were employed at the time. In addition, 78 percent of the families were unfamiliar with any agencies or professionals that might assist them in finding job opportunities.
We all wonder: who’s going to help autistic adults have jobs, a decent place to live — and friends — when their parents are gone?
That’s why we gathered to prioritize these issues and and talk about what needs to be done.
I sat next to Linda Jameson, a woman with Asperger’s Syndrome who teaches part time at a local community college and is on her way to attaining a special education degree with an autism emphasis. She contributed valuable insights to the discussion and was a delight to converse with.
Autism is a spectrum disorder, and many people on the spectrum will never reach that woman’s level of achievement. But we must help them achieve as much as they possibly can.
With our peers around the country, we used electronic keypads to vote on what needs to be done. The vast majority agreed that we should:
* Change existing funding streams and establish new ones to that financial assistance follows the person, and can be used in a variety of ways to meet each person’s unique and evolving needs.
* Increase the availability of qualified and motivated personnel who support adults with autism.
* Ensure that adults with autism have access to the supports they need to develop the life skills they need to live safe, independent and successful lives.
Within two months, a full analysis of the voting will be released in a final report. Those conclusions will be presented as the consensus statement from the AFAA Town Hall to members of Congress, as well as other federal, state and local policymakers.
We’ve got to lay the groundwork to help autistic adults lead better lives, for the sake of those directly impacted and society as a whole. It’s the right thing to do, and the only thing that makes sense.
NOTE: This was originally published Nov. 14, 2010, on Julius Karash’s health care blog.