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

11 Oct

As a follow on to the article Survey of Services Needs for Adults with Autism, here is the press release:


Date Published:
OCTOBER 11, 2012

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 AllThose 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. The survey can be found by visiting


Contact: Roberta Lee, UJA-Federation, 1.212.836.1800,


To begin registration and the survey, click on the link below:

By Matt Carey

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

  1. Gae Marie October 11, 2012 at 22:47 #

    University of Pennsylvania did a similar study for their state, I believe all inclusive regarding age…. You may want to check it out, i believe called Needs Assessment, at . I don’t see why their study can’t reasonably be applied across the nation as a starting base, therefore doing a more comprehensive or thought provoking study than what is already out there and being mindful of cost.

  2. Andrew October 23, 2012 at 21:04 #

    Let’s make it easy on ourselves: Autistic adults

    We should be free of the shadow of Autism Speaks and curism

  3. Andrew November 1, 2012 at 19:15 #

    “and parents of individuals with autism ages 18 to 35 who are under their parents’ guardianship.”

    Parents who have enslaved their Autistics sons and daughters.

    • lilady November 1, 2012 at 20:58 #

      Andrew, are you unaware of autistic children who also have quite severe intellectual impairments?

      I suggest you educate yourself how parents of these children who are growing into adulthood apply to the court for legal guardianship. How else could a parent of an adult (beyond the age of 18), be empowered to make medical decisions for them?

      My husband and I sought “legal guardianship” of our son who died eight years ago at age 28. The guardianship was granted just before his 18th birthday, based on his profound intellectual impairment and his autistic-like behaviors. I did not want for him to suffer irreparable harm, because he we didn’t have the legal ability to permit treatment/give permission for diagnostic tests while in the hospital. Nor, did I want a stranger appointed as his Guardian ad Litem to make those decisions.

      BTW, I am substitute Guardian ad Litem for another young man who has similar disabilities as my son. His parents, who are the primary Guardians ad Litem and who are my close friends appreciate that I have taken on this responsibility, in their absence.

  4. Anne November 2, 2012 at 15:26 #

    The fact that somebody is under guardianship or medical power of attorney does not mean that the person is necessarily incapable of completing the survey. Eligibility should not exclude “dependent” people as a class.

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