_SPECIAL REPORT AUTISM RESEARCH UPDATE

_Aging Out

Paul T. Shattuck’s research is putting numbers to the problem of the “services cliff” that families face when their autistic children reach adulthood.

_Paul Shattuck

Paul Shattuck is an associate professor in the A.J. Drexel Autism Institute and leader of the Institute’s Research Program Area on Life Course Outcomes.

Two decades ago, Gloria Esposito joined other parents in the hard-fought battle for early intervention services for children on the autism spectrum.

Her son, Louis Esposito III, was diagnosed with the developmental disorder when he was almost 2 years old. “I left my business,” says Esposito, 57, who lives in Haverford, Pa. “I started a full-time, at-home treatment model for my son. I had to create it from nothing.”

The parent power of the time made a tremendous difference in the lives of autistic children and eventually won them many services.

Now, as these children — young adults really — age out of high school at 21, they face an uncertain future.

“Where am I now?” Esposito asks. “I’m looking at very few options. It’s back to the drawing board.”

Aging Out Autism Image

Drexel University researcher Paul T. Shattuck understands only too well the challenges facing many families. Recently appointed associate professor of the A.J. Drexel Autism Institute, he leads the Life Course Outcomes Research Program. Shattuck has conducted pioneering work on the quality of life for autistic adults. His studies are among the first to put real numbers to outcome issues as young adults on the autism spectrum move into the world of college, vocational training or employment as well as living more independently.

What he has found is cause for concern.

“Young adults on the autism spectrum are doing much worse off, way more worse off, than their peers than we ever imagined,” says Shattuck, who has a public health background and came to Drexel this academic year from Washington University in St. Louis, Mo.

By analyzing big data sets, such as from the National Longitudinal Transition Study-2 of special education students, he has pinpointed certain troubling trends. For example, five years after leaving high school, individuals on the autism spectrum were roughly three times more likely to be disengaged from education or employment opportunities than people with serious mental illness or serious cognitive impairments. The findings were published in the journal Pediatrics in 2012.

“That’s a big difference,” he says. One reason, he says, could be shifts in the economy over the past 50 years. Today’s world focuses heavily on service-sector jobs that involve interaction with others — a fact that is particularly challenging for those on the autism spectrum.

Such stark findings can be difficult and discouraging for parents in the autism community to hear. At the same time, advocates on the frontlines welcome solid research that measures the scope of the challenges they know exist anecdotally.

“Parents say, ‘We feel like we’re falling off a cliff,’” Shattuck says of the lack of services post–high school. “Our study has quantified the height of that cliff.”

Stuart Spielman, senior policy adviser and counsel for New York City-based Autism Speaks, applauds the work. “We really do need more information on the life experience of adults on the autism spectrum,” he says. “Paul is helping to fill that void.”

Consider speech therapy. Three-fourths of children on the autism spectrum get this critical service, Shattuck says. But among adults, that number plummets to less than 10 percent.

It can mean huge steps backward in skills — an untenable prospect for parents who have spent years helping and advocating for their children.

“Paul’s research demonstrates time and time again the sorry statistics when the school bus stops coming and the sorry outcome,” says Denise Resnik, co-founder of the Phoenix-based Southwest Autism Research & Resource Center (SARRC). The organization looks to advance research and support families over the lifespan of autism.

As the mother of 22-year-old Matthew Resnik, who is on the autism spectrum, she knows firsthand the frustrations. “I’ll be damned if I’m going to allow all that early intervention to go to waste,” she says. “We can’t afford as parents, we can’t afford as a community, and we can’t afford as a country to let these adults slip through the cracks when they have so much potential.”

Resnik has helped her son create a home-based business of baking biscotti known as SMILE Biscotti. SMILE is an acronym for Supporting Matt’s Independent Living Enterprise. “He’s starting to go on sales calls,” she says with a mother’s pride.

“Young adults on the autism spectrum are doing much worse off, way more worse off, than their peers than we ever imagined. …. Parents say, ‘We feel like we’re falling off a cliff.’”

– Paul Shattuck, A.J. Drexel Autism Institute, Life Course Outcomes

Shattuck’s “work is incredibly important to shine a light on the issue and the importance of doing something about it,” Resnik says. The urgency is made all the more clear by the simple fact that 50,000 children on the autism spectrum will turn 18 this year — some half a million over a decade.

What will become of them? advocates ask.

“I believe we are today for adult concerns where we were 20 years ago for early childhood intervention,” Resnik says. What she means is that parents are once again inventing ways to help their children while social services play catch up.

In his new role at Drexel, Shattuck is focused on developing a strategic research plan and forging strong ties with the autism community. He says he plans to continue to delve into big-data analyses to identify trends and pinpoint promising practices — such as the best educational and employment supports — with the goal to improve quality of life. He also wants to grow the number of researchers studying adults on the autism spectrum in a field traditionally focused on early intervention.

“Until we started our research a few years ago,” he says, “we didn’t have population-level understanding of how many have friends, how many go to college, how many have a job, how many live on their own. … To understand any social problem, we need high-flying, population-level information. This is the benchmark data we need to know if we want to say we’ve moved the needle. If we don’t do that, if all we ever investigate is only at the clinical level, we’ll fundamentally not know if things are getting better.”

Ultimately, his work could help shape national policy. “Solving problems like this is not simple,” says Spielman of Autism Speaks. “The first step is having the research that demonstrates the degree of the challenge.”

Autism groups have recognized Shattuck’s groundbreaking studies over the years.

Both Autism Speaks and the Federal Interagency Autism Coordinating Committee spotlighted his 2009 study on the age of diagnosis as one of the most important autism studies of the year. While research shows that children can be diagnosed as young as 18 to 24 months, Shattuck found that actual diagnosis occurs at a much older age, around 5 years old.

The Interagency Autism Coordinating Committee also found his 2011 work on the use of services by adults on the autism spectrum one of the 20 most impactful scientific studies in the field. And Autism Speaks praised his 2012 paper on postsecondary job and education outcomes as one of the Top 10 research advances of the year, out of the more than 3,000 published annually.

“Paul has a real passion for what he does,” Spielman says. “He wants solutions.”

So, too, does Esposito. Her son, who suffers serious communication issues, has benefited from intensive intervention from his earliest years. Louis is able to function independently with the help of schedules and supervision. She is convinced he could hold a job with the right support.

“A lot of kids are starting to sit at home. There’s nothing out there,” she says. “We have to create it.”

With research such as Shattuck’s pointing the way and highlighting the urgency of the matter, she is forging ahead. Esposito is deep into classes that help her better understand the system and navigate the paperwork maze for services for her son.

“I know we’re going to find a solution,” says Esposito.

At Drexel, students who are on the autism spectrum benefit from services designed for their needs. The Drexel Autism Support Program (DASP) pairs mentors with participants to help with personal, social, academic and professional challenges.

Joseph Wahl III, a senior majoring in business and marketing, has Asperger syndrome. He says he has found DASP helpful in finding clubs to join and a tutor for math.

“It helped me get more involved in school,” says Wahl, 23, who hails from Clarks Summit, Pa.

Shattuck’s goal is to use his research program to develop and add to the range of strategies that leads to best outcomes for Wahl and the many others on the autism spectrum.

“People with autism are valuable members of our communities,” he says. “Like all people, they have dreams, roles to play, contributions to make. … We need to know what experiences, beyond clinical interventions, promote positive outcomes and prevent negative ones — both for people on the autism spectrum and the families and communities they are part of.”