What happens to autistic kids when they grow up? Does a kid with substantial verbal impairment have a decent shot at growing up to have a family or a job? Does quality of life get better, worse, or stay the same? What kinds of support or services do middle aged people with autism need? What do they get? Are they happy?
Psychiatrist William McMahon of the University of Utah is embarking on an ambitious three-year study to get some of those answers. His pilot project should give parents real cause for hope – ten percent of his pilot group went from being very impaired children to pretty successful adults over a twenty-five year span. A significant number of disabled autistic kids grew up to have families, jobs and a self-described decent quality of life. Most people in the pilot study got better – not worse – with age.
This study had its genesis in the 1980s when Dr. McMahon worked with Dr. Ed Ritvo to study several hundred young people with autism. This population was recruited in Utah and included 241 people with the more severe DSM III autism, and 130 people with less severe autism; more in line with current DSM IV criteria.
The 371 people ranged in age from 3 to 21. The original study ran over several years from the mid to late 1980s.
Today, Dr. McMahon is tracking down those original participants in hopes that they will join him in his next phase of research, to learn what happens to autistic people as we age. These adults – ranging from 30 to 50 years in age – will give us the most comprehensive picture to date of how autism impacts people from childhood through middle age. His pilot study – completed last year – suggests he’ll be able to find about 75% of the original group.
His original study population contained the full range of autistic affect, from non verbal people to verbal Aspergians like me. I can’t wait to see what he finds out. I feel like I’ve gotten better as I’ve aged. For me, coping skills have masked most of my autistic disabilities. Is that the rule or the exception? His pilot study did find others like me, with lifelong improvement and good quality of adult life. However, he also found people who plateaued in their teen years, and a few people who actually declined with age.
What’s the norm? And what can we do to shift from childhood disability toward adult success? I hope Dr. McMahon’s work yields insights that we can use for today’s kids. Can we figure out what made some autistic people really successful while others kind of floundered, even though they started from similar places? I hope so.
Dr. McMahon also hopes to identify autistic subtypes and perhaps gain some insight into how those groups may benefit from different approaches to life success. We’ve all heard the adage that what works for you may not work for me, but no one ever studied the reasons why.
Quality of life and social success is a big focus of this research, but they’re also examining general health and other autism related conditions – the stuff doctors call co-morbid conditions. Does a kid with intolerance for wheat or milk outgrow that, or does it linger for life?
I wish we could answer broader health questions too. Are autistic people more at risk for cancer, diabetes, or heart disease? Unfortunately, this sample size is too small for definitive answers in that regard. But it’s a start, and a very important piece of work.
I’ve spoken publicly about the need for this kind of research, and I’m pleased that Autism Speaks is supporting Dr. McMahon with a $450,000 grant. This is an example of important and valuable research that will lead to tangible benefits for people living with autism today. This work will surely lead to other studies; a few answers and a lot more questions. As a middle aged person with autism this research is certainly close to my heart. I hope you will support it too.
Here's a link to Dr. McMahon at the University of Utah
Tuesday, May 11, 2010
John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia. The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay may give you food for thought, actually printing and eating it may make you sick.