Google "vocational interventions for young adults with autism" and you'll get more than 200,000 results. But a new study finds there's little science to backup the efficacy of current methods used to help young adults with these neurodevelopmental disorders segue into the workforce.
"There's startlingly little information on the best ways to help adolescents and adults with autism achieve their maximum potential in the workplace and across the board," says lead study author Julie Lounds Taylor.
Taylor and her colleagues at Vanderbilt University sifted through more than 4,500 studies that made reference to Autism Spectrum Disorders (ASD) and therapies and found only 32 studies published between January 1980 and December 2011 that met their basic criteria, including having at least 20 study participants between the ages of 13 and 30.
But some studies were in children with autism; a lot of them were descriptive and didn't really test an intervention; and a fair number weren't really studies at all but commentaries, according to Taylor.
In the end, the researchers found only five studies that focused on vocational interventions. While this handful of studies looked at certain on-the-job programs designed to support young adults with autism and suggest these "interventions" can improve quality of life and reduce symptoms of autism, the study authors concluded, "all studies were of poor quality."
They say these studies had serious flaws including the randomization or comparison groups, which makes it difficult to draw any conclusions. Lack of follow-up and the fact that most studies were small also contributed to the researchers' deeming the quality of the research as poor. The study was published Monday in the medical journal Pediatrics.
Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, says she finds it remarkable that only five studies that address vocation skills were published in the last three decades and all were of poor quality.
"There is a tremendous knowledge gap regarding how to help young people with autism be successful in the work environment," Dawson says.
According to the latest CDC estimates, 1 in 88 children in the United States has some form of autism. For boys the incidence may be as high as 1 in 54. The CDC bases these latest estimates by looking at data on 8-year old children from health and special education records of living in 14 areas of the United States - part of the ADDM network -- during 2008. These 14 areas include 8% of the American population of 8-year-old children, according to the CDC. Health officials use this age as a benchmark because by age 8, most children with autism should be identified as receiving services.
The education system is the primary source of treatment for most families, as the government is mandated to provide an education for all children - including children with disabilities.
However, once children with autism turn 21, they age out of the education system and often have nowhere to go. Parents are acutely aware of this, and what will happen to these children as they and their parents age is a huge concern.
When you consider the latest CDC prevalence data, those 1 in 88 children who were 8-year olds in 2008 are now on the cusp of adolescence. Even using 2002 CDC estimates, when the estimate for autism was believed to be one in about 150 children, that would mean there are 1 in 150 18-year olds with autism living in the United States today.
In January 2011, Lee Grossman, then president of the Autism Society, told CNN that these young people are generally unemployed, living in poverty. "Their ongoing needs are not being addressed," he said. (Grossman left the organization after nearly 20 years six months later.)
Given these statistics, finding ways to help young adults support themselves and continue to thrive becomes even more urgent. Taylor thinks this new research could be a possible wake-up call.
She says the studies that have been done and their lack of evidence show that "we're on the front-end of understanding autism and adulthood."
As an assistant professor of pediatrics and special education at Vanderbilt University in Nashville, Tennessee, Taylor's research focuses on how adolescents transition into adulthood. She believes just as parents have been a driving force in pushing for more research in the cause of autism, they too can influence where the field moves in the future.
"We need more funding to do research," she says. That research would help determine which vocational programs will work for which person with autism given the range of the spectrum, a range that spans "someone who can go to college to someone who has severe intellectual disabilities."
Taylor is hopeful that the research landscape will change and that there will be far more useful data collected in the coming decade compared to the last three. Autism Speaks as well as the National Institutes of Health have already launched several studies focused on improving quality of life for adults with autism.