May 14, 2012 -- This year in the U.S. about 50,000 children with autism will transition to young adulthood, and for many -- especially those without economic advantages -- this transition will be far from smooth, new research indicates.
About 1 in 3 autistic teens in the survey went on to attend a two- or four-year-college, but about half neither continued their education nor joined the work force within two years after high school.
And young adults with ASD were less likely to continue their education or get a job compared to young adults with other functional disabilities, says autism researcher Paul T. Shattuck, PhD, of Washington University in St. Louis.
One Family's Transition
The researchers conclude that young adults with autism spectrum disorders are "uniquely at high risk for a period of struggling" after high school, and they call for increased emphasis on transition planning to bridge the gap between childhood and adulthood.
Peter Bell, who is navigating this transition with his 19-year-old son Tyler, couldn't agree more.
For Tyler, the process began three years ago when more than 20 family and non-family members who play important roles in his life met to talk about his future.
Bell describes his son as "an extraordinary young man," but his language skills are limited so college is not an option.
Over several days, Bell says the group worked to create a map for what Tyler's future might look like based on what brings him joy.
The Princeton, N.J., teen loves to paint, and at a local showing of his work last year, 20 of his paintings sold for about $5,000.
While painting could be a source of income for Tyler, he likes many other things and is working part-time at a local vineyard and at a local college as a manager of a girl's softball team.
In addition to being Tyler's dad, Bell is executive vice president for programs and services with the advocacy group Autism Speaks.
A link to the model the Bell family used to begin the dialog about Tyler's future can be found on the group's web site, along with other resources.
Autism Speaks will also customize a "transition tool kit" for families based on services provided in their area, Bell says.
He says these resources can help ease the transition from childhood to adulthood for young adults with autism and their families, but anxiety about the future is normal.
"Here I am an executive with the largest autism advocacy group in the country, and yet I feel anxiety about this," he tells WebMD. "There is a lot of uncertainty."
Poor Youths Had Fewest Opportunities
As the name implies, autism spectrum disorder constitutes a wide range of skill, communication, and ability levels, with those on the milder end of the spectrum having few functional impairments and normal to above-normal intelligence, and those on the other end remaining very low-functioning throughout their lives.
Not surprisingly, the study found that post-secondary education and employment rates were highest for those with the fewest functional disabilities. But even these youths lagged behind their peers without ASD.
Twenty percent of young adults in the study who had no problems with communication did not join the workforce or continue their education after high school.
"When 1 in 5 children who don't have problems with language or conversation are not finding ways to remain connected, something is wrong," Shattuck says.
The study was published online today, and it appears in the June issue of the journal Pediatrics.
For Some It's Like Starting Over
Merope Pavlides, who edits the web site Autism After 16, says many parents of children with autism spectrum disorders often don't know where to look for help when their children leave high school.
"Many feel very much like they did when their children were first diagnosed," she says. "They don't know what to do or where to turn."
She says this occurs even with highly functioning young adults on the autism spectrum.
"It is not unusual to see very bright students who do not have intellectual disabilities but who do have other issues that compromise their ability to function independently," she says.
Pavlides' own 21-year-old son, who has ASD, recently moved away from home for the first time to attend college.
He was mostly home schooled through high school, receiving his diploma at a local community college.
His transition was a big one, but he is doing well.
"He made the dean's list last semester," Pavlides says.