Almost 40 percent of young adults with autism get no medical, mental health or case management services to help them make the transition into adulthood, new research has found.
The lack of services is even more pronounced among blacks and low-income people with autism spectrum disorders (ASD). Blacks were more than three times more likely to not get any services than whites, while families with incomes of less than $25,000 are nearly six times more likely to get no services than families with incomes of more than $75,000.
“Young people with an ASD and their families are pushed off a cliff when students leave high school, where special education provides many needed services,” said study author Paul Shattuck, an assistant professor of social work at Washington University in St. Louis. “Loss of supportive services generally means greater emotional and financial strain for family caregivers and reduced opportunities for the adult with autism to be productively engaged in the community.”
The study is published in the February issue of the Archives of Pediatrics & Adolescent Medicine.
Much of the focus of research into autism is on young children, an age at which interventions have been shown to make a big difference for many with autism, said Lisa Goring, Autism Speaks’ vice president of family services. Likewise, in schools, special education is a federal mandate.
“We hear from families all the time that there really aren’t enough services for adults in the areas of employment, housing options and supports such as recreational programs and post-secondary educational opportunities,” Goring said. “More and more is being developed, but it doesn’t meet the needs of all of the adults with ASD that are here now, and certainly there are many more coming.”
An estimated one in 110 children has an autism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention. The prevalence of autism has risen over the past two decades.
And though the focus on early intervention is important, Shattuck noted, autism is a lifelong condition. “The majority of the typical lifespan unfolds during adulthood,” and there’s a need to find ways to improve life for autistic people of all ages.
In the study, researchers looked at data from a national survey of the parents of young adults in 2007 and 2008.
About 9 percent of 19- to 23-year-olds were getting speech therapy, about 42 percent received case management, 23.5 percent received medical services and 35 percent received mental health services.
About 39 percent received no services.
Access to services had fallen from the young adults’ high school years, when nearly 75 percent were getting speech therapy, about 64 percent had a case manager, about 47 percent received medical services and 46.2 percent received mental health services.
Autism is a neurodevelopment disorder characterized by problems with language and social interactions. About 40 percent of children with autism don’t speak, while about 25 percent to 30 percent of children are able to say some words at 1 year to 18 months old but then lose the ability, while still others learn to speak later in childhood, according to the CDC.
“The ability to succeed at social interaction and communication is necessary for success in employment, post-secondary education, job training and community participation,” Shattuck said. “However, funding streams for adult services rarely reimburse for speech therapy. Our policies are yanking away one of the interventions that probably matters most when it comes to helping these young adults succeed at life in the community.”
For information on autism and autism treatment, contact:
Integrated Development Services, Inc. 6506 Schroeder Road, Madison, WI 53711 (P) 608.441.0123 (F) 608.441.0126