As Children With Autism Grow Up, Care Gaps Widen

While children are usually at the forefront of the discussion surrounding autism services, the disorder doesn’t go away in adulthood; it’s a lifelong condition. Yet, adults with autism are often faced with far fewer treatment options and less information about their choices than their younger counterparts.

That’s according to a recent study by Case Western Reserve University, which aimed to identify service gaps and and top concerns for adults with autism and their families.

Researchers surveyed more than 174 families in Northeast Ohio, all of whom had members with autism, ranging in age from 16 to 30. They found that more than half of all survey respondents (51%) said they lack information about transitional adolescence-to-adulthood autism services, while another 44% said such services were not available to them. 


On top of that, more than 43% of respondents said they were on waitlists to receive such services, indicating that demand is outpacing supply.  

“Many young people with [autism spectrum disorder] ASD are at risk for reduced quality of life in adulthood,” David Biegel, a social work professor at Case Western Reserve University and co-director of the study, told the schools’ internal communications outlet, the Daily. “Additionally, families of adolescents and young adults with ASD face all kinds of stressors — especially during those critical transition years.”

Karen Ishler, a senior research associate at Case Western Reserve University who was also co-director of the study, agreed. 


“What happens when they age out? It’s a growing concern,” Ishler told the Daily. “We have to look at the service delivery, because we know there are many unmet needs.”

While those unmet needs are troubling, they present ample opportunity for behavioral health providers to fill gaps in autism services. 

That idea is only being reinforced by investors’ interest in the space: The autism market is demanding the highest multiples in all of behavioral health, and autism deals accounted for nearly half of all behavioral health transactions in the third quarter of 2019, according to M&A advisory firm Mertz Taggart.

On top of that, things are looking up on the federal front, too. 

In September, President Donald Trump signed the Autism CARES Act of 2019, which authorizes more than $1.8 billion in federal autism funding over the next five years.

While in most respects, the law is an updated version of the 2014 Autism CARES Act, it comes with a few exciting new provisions. 

Namely, it expands government autism programs and mandates research to include adults for the first time ever. Historically, federal autism funding and programs have focused on those 21 and younger, leaving few options and little research on adults with autism. 

Advocates at Autism Speaks lauded the move as a win for adults who have traditionally fallen through the cracks. 

“This legislation ensures sustained funding to better support people with autism across the spectrum and at every stage of life,” Autism Speaks President and CEO Angela Geiger said in statement following the news.

However, critics have pointed out that the act’s inclusion of adults doesn’t necessarily mean they’ll see improved access to services just yet.

For one, the act doesn’t set aside money to improve autism services for adults, Molly Candon, a research assistant professor of psychiatry at the University of Pennsylvania, told Spectrum News earlier this year

“Without the ability to improve services delivery, there’s no point in doing the research,” Candon said. “I don’t think this bill can be passed in a vacuum.”

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