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Survey of Services Needs for Adults with Autism

Posted Oct 11 2012 3:47pm

There is a great need for more and more accurate information on the needs of autistic adults. Information will allow for better advocacy and changes.

The Autism Science Foundation and the UJA Federation of New York have teamed up with the Interactive Autism Network (IAN) to gather data in a survey.

Now is the chance to be heard. Autistic adults, parents of autistic adults and representatives of autistic adults are encouraged to participate. Details are below in a message from Alison Singer at the Autism Science Foundation.

Now is the chance to be heard.

We need your help!

As many of you know, there is little information about the changing needs of adults with autism spectrum disorders (ASD) to guide those planning programs and services. That is why the UJA Federation of New York and the Autism Science Foundation are asking adults with ASD (and their parents or guardians) to complete a survey addressing what is going well in daily life, and what is a challenge. The results of this survey will inform decision making with regard to which programs should be expanded and which may no longer be of value.

We invite you to take this survey by joining the Interactive Autism Network (IAN) – the world’s largest online autism research project — and then completing the UJA Adult with ASD Survey. As a member of IAN, you’ll be informed about future surveys and studies, with a chance to provide ongoing input regarding the experience of adults with ASD over time. IAN registration and this survey can be completed entirely online and will take approximately 20 minutes.

You are eligible to participate in IAN and the UJA Adult with ASD Survey if you are:

· An adult with ASD who is independent
(that is, you are not under anyone’s legal guardianship)

· The parent of an independent adult with ASD
(that is, your 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)

If you’d like to read the IAN Research study consent form, including privacy policies, before continuing, click here .

To begin registration and the survey, click on the link below http://bit.ly/ORf7d5

If you have any questions, the IAN team is happy to answer them for you. You can contact them at 1-866-348-3440 or ian@kennedykrieger.org .

Your participation is critical, and will inform those planning programs about which resources and services adults with ASD and their families need most. Thank you in advance for your support and please forward this email to any individuals or groups who may be interested in participating.

Sincerely,

Alison Singer
President, Autism Science Foundation

The press release can be found on the Autism Science Foundation’s website.


By Matt Carey



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