Looking Ahead: CT Pilot Program for Autistic Adults
January 21, 2008 by Kristina Chew, PhD
Filed under Adulthood, Asperger's Syndrome, Work
“We put a lot of energy into birth to 3 and somewhat through the teen years, but depending on when they graduate, they fall off the end of the earth.”
“Why put resources, energy and money into them and then have nothing when we know that if our young adults are supported into the next stage, they are going to do OK.”
So Lois Rosenwald, co-director of the Connecticut Autism Spectrum Resource Center says in the January 20th Hartford Courant about autistic adults. Rosenwald was instrumental in developing a $1million pilot program that was created by the Connecticut legislature a few years ago “to assist adults of normal intelligence with diagnoses on what is called the autism spectrum”; it is the first such program (according to the Hartford Courant). The program was launched in the New Haven area in July of 2006 and currently serves 28 people, among whom is 47-year-old Jonathan Ross, who was only recently diagnosed with Asperger syndrome, and also 24-year-old Shannon McEvoy, who received services throughout her education and is now “trying to figure out what she might do.”
I’m hopeful that Connecticut’s pilot program will be successful: While my own son will need more supports than Ross or McEvoy, the program—with its emphasis on helping autistic adults in practical and daily concerns, such as nutrition and social skills—suggests some places in which to start. I heard the mother of a 20-year-old autistic adult who will need supports throughout his life make the same point that, yes, it’s wonderful that we can give autistic children the best education possible, but we’re preparing them for nothing if there aren’t jobs and programs and living situations for them once they finish school. And (for me, at least) the time to start working on such programs and on ways to maintain and fund them, is right now.
Jeff Stimpson
Jill Cornfield
I really think this is important in ways that really got overlooked for me, coming out of a far more stereotypically portrayed autism image; it wasn’t even recognized that I had autism by my school until I was 14 or so, and my parents (influenced by UCLA) largely thought all of it part of a bygone era. And it really made my life far more difficult in places than it should have.
Cliff
I’m spending too much time on another, political blog. I found myself trying to find the “recommend” button on the right to click it…
“Falling off the end of the earth” is where we are right now…
Well, I think that program is a wonderful idea and wish it was around my neck of the woods. Since it isn’t it’s back to business as usual - we do it ourselves of course:) I wonder if they could get successful autistics in to teach the social skills parts. I think this is a fairly common phenomenon in a lot of areas but socially wired folks aren’t usually too aware of the assumptions they make vis a vis social relations and are usually completely blind to their own conditioning. So when they teach ’social skills’ it seems to my mind to have a lot in common with fairy tales.
…And (for me, at least) the time to start working on such programs and on ways to maintain and fund them, is right now.
Agreed. Setting up and implementing such programs takes lots of time. So we all need to be advocating for such programs now.
And I think Alyric’s suggestion of having adult autistics teach social skills is an excellent one. Who better to teach such skills than those who have had to develop their own methods themselves.
Joe
I know that this program is well-intentioned and is helpful to many people, and more services for adults certainly are needed, but there’s a patronizing tone to it that rubs me the wrong way. Especially the “Why put resources, energy and money into them and then have nothing” line.
She seems to be assuming that none of us can gain anything useful from our education or do any productive work unless we have life skills coaches and other professionals directing all aspects of our lives in adulthood. And that’s just wrong; in the past, many of us who grew up without being medicalized took responsibility for our lives and found jobs, etc., without any services whatsoever.
Granted, it was often difficult and took a lot of trial and error, and if we’d had services available then, many things would have been easier. But providing more services should not mean that we go to the opposite extreme: today’s autistic adults should not be routinely infantilized, nor do we need a stereotype that we cannot accomplish anything without constant coaching. If that stereotype becomes widespread, how are employers going to react to autistic workers who put in their applications the old-fashioned way, rather than going through a subsidized life skills program? I suspect it is likely to increase discrimination.
Yes, the article did not include any dissenting viewpoints about the program — following up on, Alyric’s suggestion about autistic adults teaching social skills, it would be good (as in necessary…) to include adults who are on the spectrum in the planning process.
Well,
At least as described in the article, the folks currently in the pilot seem to need and want to be enrolled, and that it seems to be supportive in helping them to reach personal goals.
Good luck to them, and the pilot…since pilots do not always continue beyond the initial grant.
Please keep us up-to-date, Kristina. I’m with ya!
I appreciate your situation abfh, but I am one of the folks that might be able to benefit from such a program, if it were available in my area, even if it was a bit patronizing.
While I may be able to ’sound’ sophisticated in formulating my responses here on the blogs, there are some aspects of my life that are in need of the kind of life skills coaching that seem to rub you the wrong way. (Bookkeeping/Accounting for one.)
I might be able to program machinery to do very complex things automatically, but getting myself to take care of such ‘minor’ events as tooth brushing, household clean up, and paying the bills on time and having a sense of ‘budget’ escape me.
I’m just catching up on my reading. I have been fortunate to know Lois and the folks at ASRC. Lois is anything but patronizing. Before the Pilot Program CT was one of three states nationwide that had no programs for people with ASD after age 21 who did not qualify for a MR label (under 70 IQ). We needed to make it clear to our legislators that there was this group of adults who really needed individualized support in order to function more fully in the community. Birth to Three in our state had been getting the attention of the legislators and that is why, I believe, Lois made a point of saying Birth to Three and school services are great, but people’s lives don’t end there.
Parents need to be advocating for services at the state level. Those of us with children at the elementary school level or younger tend to be complacent about this; thinking there is plenty of time before they will be out of school. Legislation often takes years to get passed and legislators tend to listen when there are many voices. Get to know your legislators and let them get to know you and your children. It is much harder for them to forget adorable children than it is people asking for money (okay, I used the dog for the public hearing because the kids were in school, he made many friends there http://www.alongthespectrum.com/index.php?s=dog)
Now I’ll get down off my soapbox.
Lee
We are one of those families who fell off the face of the earth. But as a result, my 31-year-old daughter on the autism spectrum is living in her own home with livein caretakers.
I am the founder and president of a nonprofit that runs her “program” and helps others navigate the complex world of “adult services.” Check out our blog: http://www.katydidfoundation.org/WordPress and Web site: http://www.katydidfoundation.org and share your stories, both successes and failures, and concerns. Hopefully this Web site and blog will act as a clearinghouse of information for all of us.
I’m not entirely sure this is the same program, but it sounds like it, and sounds like it got an expansion,
“Governor M. Jodi Rell today in a ceremony signed Public Act 08-63, An Act Concerning Expansion of the Pilot Program for Persons with Autism Spectrum Disorders (ASD). The bill expands a 2006 pilot program that helps persons with ASD live independently by streamlining programs and providing case management services.
… In Connecticut, adults with ASD who do not
have mental retardation number between 5,000 and 7,000.
…The expanded pilot program provides those who are struggling with this disease (!) with access to services and practical solutions that can help improve their quality of life.
…The existing program serves people in greater New Haven, in Middlesex County, on the shoreline and in Naugatuck Valley. The new
law requires that eligible adults living outside the pilot’s current service area have access to the expanded slots. The law also extends the pilot program’s date for nine months, until June 30, 2009, and requires the Department of Social Services – the administering agency
– to report results of the program by January 1, 2009.”