Rutgers University — long a center for research into childhood autism — could also become a leader in studying the challenges faced by autistic adults.
Two families with children with autism are endowing a faculty position at the New Jersey school that will be dedicated to academic research on adult autism and to training people who will provide services to these adults.
Stanley Messer, dean of the Rutgers Graduate School of Applied and Professional Psychology, said the new chair will dovetail with ongoing state efforts to treat children with autism with applied behavior analysis — an intensive approach to modifying behavior – and to help families of adults with autism once they no longer attend school.
Adult autism is an area of increasing concern across the United States. Understandably so, more than 500,000 children with autism will grow into adults over the next decade. And according to estimates from the federal Centers for Disease Control and Prevention, one in 49 New Jersey children has autism, nearly twice the national rate.
Dina Karmazin Elkins and Amy and Michael Lillard are donating $1.5 million to establish the Karmazin and Lillard Chair in Adult Autism at Rutgers. The gift is being matched by an anonymous donor, providing a total of $3 million to fund the position.
The cause is close to both Princeton families’ hearts. The Lillards have two sons, age 19 and 16, with autism; Elkins has an 11-year-old son with autism. All three kids attended the same school.
Elkins, whose father Mel Karmazin is the former CEO of CBS, and the Lillards chose the university because of the track record of the Douglass Development Disabilities Center, Amy Lillard said.
The center, founded in 1972, has trained many graduate students who have researched and served children with autism. The families hope their endowed position will be used to train professionals who will work with autistic adults.
“It’s been great how much has been done in diagnosing and helping children with autism, but there are fewer opportunities” to focus on adults, Lillard said.
“That’s a huge issue — to help these individuals, these adults, just to help them achieve a great quality of life in a work environment, in their home environment, recreation-ally,” said Lillard, who husband Michael is the chief investment officer for Prudential Fixed Income.
Messer said the professor hired to fill the chair would likely focus on academic subjects like the transition of autistic children to adulthood, including the occupational and social challenges they face. Rutgers is looking for a professor who will try “to learn new things and conceptualize in new ways to move the field forward,” Messer said.
The professor would work with graduate students who would deal directly with adults with autism where they live, including with their families or in group homes.
Messer said New Jersey and its universities have a responsibility to address the issue due to the state’s high autism rate. It is unknown what causes the condition, which is characterized by impaired ability to interact socially and to communicate.
Messer also is hopeful that the professor will reach out social workers and medical school staff members and students.
The national search to fill the position is under way and is scheduled to take more than year. A successful candidate will start in September 2014.
Peter H. Bell, executive vice president of national advocacy group Autism Speaks, welcomed Rutgers’ endowed chair, which was announced in early February.
“There is a much great appreciation that for most autism is a lifelong disorder,” Bell said, adding that the needs of people with autism increase significantly once they are no longer in school. “There’s just no question in our minds that this is an area that needs significantly more attention, so we’re very excited about this gift.”
Bell estimated that there are fewer than a dozen researchers nationally focused on adult autism. He expects that number to grow as more people do research “to help us understand what works best for adults and what programs can really help adults with autism realize their potential,” Bell said.
Bell, who lives in Pennington, noted that his 20-year-old son has autism: “I’m personally very excited about the fact that Rutgers is going to be developing this program close to home.”
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