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Autistic young adults missing out on much-needed services

Posted Feb 09 2011 1:22pm

Prof. Paul Shattuck, of Washington University in Saint Louis, is one of those people I greatly admire. He has repeatedly taken on studies of groups who are often overlooked in the majority of studies.

In a just release paper, Prof. Shattuck has studied what happens to young autistic adults as they transition out of high school. Sadly, about 40% stop receiving services post high school. Levels of services for speech therapy, mental health, medical diagnostics and case management all dropped notably after high school.

Low income and African American young adults were much more likely to not receive services.

Shattuck also found that the odds of not receiving any services were more than three times higher for African-American young adults compared with white young adults and more than five times higher for those with incomes of $25,000 or less relative to those with incomes over $75,000.

Rather than summarize this work here, let me present the news release . Follow the link for a video press release with Prof. Shattuck.

What happens to young adults with autism spectrum disorders (ASDs) once they graduate high school and are no longer entitled to services?

“National, state and local policy makers have been working hard to meet the needs of the growing numbers of young children identified as having an ASD,” says Paul Shattuck, PhD, professor at the Brown School at Washington University in St. Louis. “However, there has been no effort of a corresponding magnitude to plan for ensuring continuity of supports and services as these children age into adulthood.”

In a first-of-its-kind study, Shattuck looked at rates of service use among young adults with an ASD during their first few years after leaving high school. He found that 39.1 percent of these youths received no speech therapy, mental health, medical diagnostics or case management services.

Shattuck also found that the odds of not receiving any services were more than three times higher for African-American young adults compared with white young adults and more than five times higher for those with incomes of $25,000 or less relative to those with incomes over $75,000.

In his study, published in the current issue of the Archives of Pediatric and Adolescent Medicine, Shattuck looked at medical, mental health, speech therapy and case management services.

He found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management and 9.1 percent for speech therapy.

This compares with service use while in high school: 46.2 percent received mental health services, 46.9 percent had medical services, 74.6 percent were getting speech therapy and 63.6 percent had a case manager.

Shattuck says that the years immediately following the age at which students typically exit from high school are pivotal for all youths.

“A positive transition creates a solid foundation for an adaptive adult life course and a negative transition can set the stage for a pathway fraught with developmental, health and social difficulties,” he says.

“Youths with ASDs are especially vulnerable during this period because of their challenges with communication and social interaction, greater reliance on others for aid and high rates of health and mental health problems.”

Shattuck notes that there is a dearth of nationally representative data on the prevalence and correlates of service use among young adults with ASDs.

“Basic descriptive data on the prevalence and patterns of service use are necessary for planning by policy makers and administrators,” Shattuck says. “Knowledge of service use can help identify underserved populations and plan targeted services.

“Estimates of service use and correlates will help clinicians, service providers and family members be more informed and better prepared as they try to help teens with ASDs navigate the transition from adolescence to young adulthood,” he says.

Data for this report came from the National Longitudinal Transition Study 2 (NLTS2), a 10-year study conducted from 2000-2010 by SRI International for the U.S. Department of Education that followed more than 11,000 youths enrolled in special education as they aged into adulthood.

The study included 920 youths enrolled in the special education autism category at the start of data collection in May 2001.

The study’s co-authors are Mary Wagner, PhD, principal scientist in the Center for Education and Human Services at SRI International, and Sarah Narendorf, Paul Sterzing and Melissa Hensley of Washington University in St. Louis.

  1. Tweets that mention Autism Blog - Autistic young adults missing out on much-needed services « Left Brain/Right Brain -- Topsy.com:
    [...] This post was mentioned on Twitter by TPG to Autism, Alltop Autism. Alltop Autism said: Autistic young adults missing out on much-needed services http://bit.ly/eahsY3 [...]
  2. Astrid:
    I've heard about this study. Unfortunately, I can't access its full text, but the press release was rather interesting. Makes me wonder what happens to young adults with ASD once they lose services, how well they cope.
  3. stanley seigler:
    [Astrid say] Makes me wonder what happens to young adults with ASD [etc] live with ageing parents...live in the streets...live in prisons...live in snakes pits (institutions and group homes)...useless eaters can eat cake. no one really care...USA-CA gov brown (moonbeam) proposes cutting $750M from their programs. we should invade iran to get our minds off these useless eaters. stanley seigler
  4. Red Headphones:
    I was trying to figure out what the cut off age was for their study whether it was the actual F.A.P.E 21-22 yrs of age or actual high school 17-18. If it is the F.A.P.E age there are ways to continue services but there isn't as much money as in school and the resposibilty gets place on the parent or cargiver to administrate those funds available and to deal with all the red tape that goes with getting those sevices paid for, whereas for the childs school years the school district took care of administrating the monies.
  5. Sullivan:
    Red Headphones, I emailed the author asking about this. When I hear back, or get a copy of the paper, I'll report back here.

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