In the last 10 or so years, autism has exploded into the national consciousness. For parents with young children, the terms “autism spectrum disorder” and Asperger’s
syndrome have become part of a new vocabulary to describe children who seem
withdrawn, uncommunicative, anti-social or slow to pick up on social cues.
While the vast majority of the attention given to autism has focused on very young children, teenagers with the condition who have to navigate the difficult transition into adulthood seem to have received short shrift. For them, the passage can be a particularly trying time, as they struggle to achieve academically, adapt socially and excel in new careers — independent from the arms of the local school districts that oversee their care until age 21.
To shine a light on this underserved population, UJA-Federation of New York convened an autism symposium on April 22 that focused on adolescents emerging into young adulthood with a wide range of spectrum disorders, and how the community can better respond to meet their growing needs. The diagnosis rate of autism has surged in the past couple of years, rising from approximately 1 in 150 in 2007 to 1 in 110 in 2009, according to a Center for Disease Control journal publication presented at the conference by Marshalyn Yeargin-Allsopp, medical epidemiologist and chief of developmental disabilities at the CDC.
But research on the disorder has thus far focused primarily on children, leaving those who are striving to become independent young adults largely out of the picture.
“Sometimes in adolescence kids take off for the better; sometimes kids take off for the worse,” said Dr. Fred Volkmar, director of the Yale Child Study Center and a speaker at the conference. He laments the lack of resources that focus on autistic young adults. “This is unfortunate because this is often the group of people that want help the most.”
The conference stemmed from the UJA-Federation’s ongoing effort to promote research and community action for people with mental disabilities. In recent years the charity has poured about $7 million into the effort, channeling money from its Caring Commission to agencies such as the Jewish Childcare Association, the JCCs of the Greater Five Towns, Manhattan and Mid-Westchester, the Riverdale Y, the Samuel Field Y, the Sid Jacobson JCC and Westchester Jewish Community Services, among others. The money began flowing after a federation-sponsored study in 2006 analyzed the recent increase in autism cases and the impact of the disorder on the Jewish community. Agencies were then asked to develop programs to meet the growing need.
“A lot of our work has been focused on those young adults with autism who are not eligible and for whom there is no special funding,” said Anita Altman, deputy managing director of government and external affairs at UJA-Federation, who works with city and state governing bodies to bring public funds to the programs. “There’s very little money that goes into these kinds of services.”
After graduation, autistic young adults often find themselves with very few alternatives besides the kinds of integrative community programs federation agencies have created, the experts explained. And those who have above-average IQs do not qualify for assistance from the New York State Office of Mental Retardation and Developmental Disabilities.
“Sometimes the people most in need of services are disqualified because of their level of cognitive ability,” Volkmar said.
But new community initiatives are attempting to take over where high schools leave off, providing support groups for parents, career goal assessments, internships and social groups. In the city, some programs that Altman highlighted were the Transitions Program at the JCC in Manhattan and the Brooklyn Autism Spectrum Disorder Initiative, which is held at Jewish community centers across southern Brooklyn.
“So much energy was put into early intervention, and rightly so because there are lots of strides you can make with early intervention — but [the older teens] are graduates of early intervention,” said Elise Hahn-Felix, director of the Long Island-based Compass Project for Autistic Jewish teens at the Jewish Child Care Association. “The bottom line is you only spend 18 to 19 years in school and the rest of your life you are supposed to live as independently as possible.”
Uniquely important to teens entering adulthood are romantic relationships, and mental health professionals are working with their autistic patients to explore their sexuality in a healthy way, helping them learn to trust and communicate openly.
“Not all teens are going to be interested,” Shana Nichols, clinical director of the Fay J. Lindner Center for Autism and Developmental Disabilities in Brookville, told conference participants. “It can be that the social demands are too much, the sensory demands are too much — or, we can have a lot of late bloomers.”
In terms of academics, those young adults who are high enough functioning to continue their studies at university can benefit from integrated services offered by programs like Hahn-Felix’s Compass Project at nine local colleges in Westchester, Queens, Manhattan and Long Island.
“Our niche is that we service young people starting at 14 who are beginning the transition process from high school and onto next steps,” Hahn-Felix said.
In addition to serving these young adults academically, the Jewish Child Care Association also oversees a high-rise apartment program for independent living in White Plains. The program has grown from 15 young adults to 27, all of whom are verbal but have a developmental disability that may include Asperger’s syndrome or mild retardation.
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