Autism Science Foundation Partnering with UJA-Federation to Launch Three Surveys Designed to Identify Services and Needs for Adults with Autism

The New Surveys — Conducted on behalf of UJA-Federation by the Autism Science Foundation and the Interactive Autism Network — Aim to Help Service Providers Expand Programs That Support All Those Affected by Autism

(OCTOBER 11, 2012—New York, NY) UJA-Federation of New York announced today the launch of a series of surveys designed to determine which types of services for adults with autism are most needed in the New York metropolitan area. The surveys are being administered by the Autism Science Foundation and the Interactive Autism Network (IAN).

The three surveys target individuals with autism ages 18 to 35; parents of individuals with autism ages 18 to 35 who are independent; and parents of individuals with autism ages 18 to 35 who are under their parents’ guardianship. People fitting one of these three groups are invited to participate by registering at the Interactive Autism Network (IAN) and completing the “UJA-Federation Adult with Autism Spectrum Disorder (ASD) Survey.”

“The goal of this project is to identify the drivers of fulfillment and success for autistic adults in the areas of employment, leisure activities, and spirituality,” said Deborah Hilibrand, a member of UJA-Federation of New York’s Autism Task Force. “We will then use this information to help UJA-Federation and other agencies provide these critical activities by providing financial support for projects that deliver these services.”

“We also want to use the data to enhance public awareness about the critical issues facing adults with autism and their families by broadly disseminating the results of this survey,” said Alison Singer, president of the Autism Science Foundation.

The free survey is designed to be completed entirely online. Surveys must be completed by Friday, November 30, 2012. All responses and data collected will be kept anonymous and confidential. Participants in this survey do not have to be Jewish or receive services from UJA-Federation, and people of all faiths are welcome.

Eligibility to participate in the UJA-Federation Adult with ASD Survey includes:

  • Residency in the five boroughs of New York City, Long Island, or Westchester.
  • An adult with ASD who is independent and is not under anyone’s legal guardianship.
  • The parent of an independent adult with ASD (for example, one’s adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions).
  • The legally authorized representative of a dependent adult with ASD (for example, you may have legal guardianship or medical power of attorney for the adult with ASD).

“This project is especially exciting because the information collected will not only have an immediate effect on improving services for adults with autism, but it will also advance autism research involving adults — a group that is sorely underrepresented,” said Dr. Paul Law, director of the Interactive Autism Network at Kennedy Krieger Institute. “I believe that community service providers like UJA-Federation of New York are key to ensuring greater involvement of adults with autism in research.”

Additional funding for this project was provided by the Hilibrand Foundation and the FAR Fund.

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Contact: Roberta Lee, UJA-Federation, 1.212.836.1800, leer@ujafedny.org