SOURCES: Anne Roux, M.P.H., research scientist, Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, Philadelphia; Lisa Goring, executive vice president of programs and service, Autism Speaks, New York City; April 2015, National Autism Indicators Report: Transition into Young Adulthood, A.J. Drexel Autism Institute, Drexel University
TUESDAY, April 21, 2015 (HealthDay News) -- As children with autism grow older, many approach adulthood without continued access to the kind of special needs services they routinely received as children, a new report warns.
The "National Autism Indicators Report: Transition into Young Adulthood" also reveals that such children may enter adulthood without the advanced planning they need to find jobs or live independently after high school.
Autism spectrum disorders are a group of developmental problems that can cause significant social, communication and behavioral challenges, according to the U.S. Centers for Disease Control and Prevention.
Some of the more concerning findings in the report from Drexel University's A.J. Drexel Autism Institute include:
"In public health, this is what we call a wicked problem, because it is complex and requires bigger-picture thinking to generate solutions," said report lead author Anne Roux, a research scientist with the Life Course Outcomes Research Program at the A.J. Drexel Autism Institute in Philadelphia.
"We believe an 'all hands on deck' approach is needed" -- involving communities, businesses, government agencies, schools, nonprofits, medical providers and families -- "to improve the quality of life for adults with autism and their families," Roux said.
Roughly one in 68 U.S. children is diagnosed with some form of autism, according to Lisa Goring, executive vice president of programs and service for Autism Speaks in New York City. "And we know that over the next 10 years, 500,000 young adults with autism will become adults with autism," she said.
"But we as a society are not prepared for this," added Goring. The problem: need-based special education services typically end when children age out of the school system at 21 or 22.
"But as adults they may still have those same needs," she said. "And while some adult services exist, it depends on where you live, and there's no entitlement to them. And where they are available, there are often long waiting lists."
Goring's assertions are backed up by the Drexel report, which included data collected by two national surveys.
Taken as a whole, the surveys showed that among young adults with autism, fewer than six in 10 had a detailed "transition plan" in place for how to find employment, continue their education, or live independently once they graduated from high school. About one in four young adults with autism also had no access to the kind of special needs services that might have helped them address such concerns, according to the report.
So what can parents do?
"The transition to adulthood really starts from birth," said Roux. "Parents can begin very early to ask questions, plan for the future, and search for information and resources. But the solution cannot only rely on parents. Our public schools are required to have transition plans in place for students with autism and other disabilities. But we know that's not consistently happening, and there are huge questions around the quality of the planning that does occur. Fixing what is already federally mandated is an excellent place to start."
For her part, Goring said the lack of reliable support for young adults and adults with autism means that it becomes all the more important that plans for successfully transitioning out of childhood be made as early as possible.
"While school entitlements to services are still in place, it's imperative that everyone works together to help these children develop as many independent skills as possible," Goring said.
"Of course we really need more adult opportunities and services," she added. "But the hope is also that the more skills we help them develop at a young age, the less support and services they will need as adults."
There's more on how to facilitate child-to-adult autism transitions at Autism Speaks.