By Jean Wang
Dina Karmazin Elkins’ life was altered nine years ago when her son, Hunter, 2 at the time, was diagnosed with autism.
“When your child is diagnosed with autism, your lives change immediately and you spend your time as a parent trying to help them as much as you possibly can to overcome whatever challenges they may have,” Amy Lillard, a Princeton resident whose two teenage sons, Craig and Scott, are also on the autism spectrum, wrote in an email.
For Karmazin Elkins, these changes involved a move from Los Angeles to Elkins’ current residence in Princeton, where there are better resources for children with autism.
Yet for Lillard and Karmazin Elkins, who became friends when their sons attended Princeton Child Development Institute together, that desire to help extends beyond just their children. To that end, the Lillard and her husband, Michael Lillard, Chief Investment Officer of Prudential Fixed Income, along with Karmazin Elkins, and her father, Mel Karmazin, philanthropist and the former CEO of Sirius XM Radio, have made a joint donation of $1.5 million to help establish an adult autism chair at Rutgers University.
“There is a lot of excitement about this in the world of autism, because there is so little of this kind of professorship available,” Stanley Messer, dean of the Rutgers Graduate School of Applied and Professional Psychology, said.
According to Karmazin Elkins, the donation was a natural extension of her family’s philanthropic work. Karmazin Elkins is the executive director of the Karma Foundation, established by her mother, Sharon Matlofsky Karmazin, and the executive director of the Mel Karmazin Foundation Inc., established by her father.
“Once my son was diagnosed, my family decided that more of our funds would go to autism in general,” Karmazin Elkins said.
These philanthropic efforts included donating books about autism to public libraries throughout New Jersey and providing grants in autism to various organizations. Most of those efforts were directed toward teens.
That focus, however, has shifted as Karmazin Elkins’ son has grown older. Since his diagnosis nine years ago, Hunter has grown into an active 11 year-old who enjoys gymnastics and hip-hop music.
“As time has gone on, and we start to look at where kids are going as teenagers and what they’re doing when they get older, you realize there are many fewer good services for older children and adults than there are for kids,” Karmazin Elkins said.
The Lillard family, whose two sons are already teenagers, shared these same concerns. Through their discussions, the two families realized that one of critical reasons behind this disparity lay in the lack of specific training for people to work with autistic adults.
“Because this is a disorder that starts quite early, much of the focus is there,” Messer said. “There is much less on the transition from adolescence to adulthood and the particular problems that adults with autism face.”
Messer said autistic adults face unique problems in the social sphere, such as with issues of intimacy, as well as in the vocational sphere, such as those that arise from inappropriate behavior at work.
To address this gap, the two families decided to help create the first adult autism chair in the country at Rutgers.
“We wanted to focus our efforts on helping adults with autism,” Lillard wrote. “We felt that funding a chair specifically in adult autism will help Rutgers in its efforts to find ways to help the fast growing population of adults with autism.”
With Rutgers’ emphasis on service, the families felt that Rutgers’ Graduate School of Applied and Professional Psychology was the perfect place to create such a faculty position.
“We already have an entity called the Douglas Developmental Disability Center, which educates and treats children and adolescents with autism, so, for us, this is a natural extension of that work into adulthood,” Messer said.
Messer said the search for someone to fill the position has already begun. The ideal candidate would already be doing research in the field of transition from adolescence to adulthood. In addition to research responsibilities, the chair would help train students in various disciplines, such as social work and psychology, to work with adults with autism.
Messer hopes to begin advertising for the position in May to find someone to begin in the fall of 2014.
Given that Karmazin Elkins’ son is only 11, she hopes that he might be able to reap some of the benefits of increased training of students to work with autistic adults.
“I’m hoping he will be able to get the right education and training to have a happy, fun life while also being productive and having job,” Karmazin Elkins said.
