Survey of Services Needs for Adults with Autism

11 Oct

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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2 Responses to “Survey of Services Needs for Adults with Autism”

  1. Lara Lohne October 13, 2012 at 08:58 #

    I am unable o participate in this survey as my son is not an adult and my partner has no official diagnosis. Yet after our son’s diagnosis and all the learning we did relating to ASDs in general and autistic disorder in particular, we have come to recognize similarities between our son and my partner. While my partner is an adult and appears normal, many people throughout his life that have gotten to know him even a little bit, had always referred to him as being ‘an odd duck’ or a little weird and in the most cruel description, creepy. He isn’t, but he does have quirks and oddities that I see now as just part of who he is, yet they have kept him from being able to fit in.

    What we are running into trouble with is finding someone in our area that has experience and is qualified to do adult ASD evaluations and will also accept our state medicaid coverage. Even his appeal to the coverage managing company was denied because they claim this is particular evaluation is not medically necessary. We are nearly 100% certain that my partner falls somewhere on the spectrum, and because of this he has severe anxiety, agoraphobia and bi-polar disorder. One psychiatrist even went so far as to say he suspects dissociative personality disorder. He has anxieties about food and filling out forms and has been on medical leave from is job since April when he had a break down of sorts and has been focusing on trying to get a definitive diagnosis. All he has been able to get is people saying he possibly has these other things, and they have attempted to treat him, even though they refuse to diagnose him.

    It’s frustrating to say the least. But my point in writing this is, if I were able to participate in this survey, I would actually ask for more assistance, funding or whatever it would be considered, to evaluate adults for ASDs since they are finding now, with the better diagnostic criteria, more adults fall under the spectrum then was originally believed. These adults who are not yet labeled, but where an ASD is suspected, have no recourse if they are in similar situation to my partner. He needs help, but any help anyone tries to give him is focusing on the co-morbid conditions and trying to tackle them from a neurotypical stand point. In someone who is not neurotypical and the core issue is what is causing these other conditions, their treatment ideas are actually making things worse for him, rather then better.

    Does anyone have any thoughts or advice that might be helpful in this situation? We’ve pretty much reached the end of all avenues here, at least the ones that we know of. Any information would be helpful.

Trackbacks/Pingbacks

  1. Autism Science Foundation Partnering with UJA-Federation to Launch Three Surveys Designed to Identify Services and Needs for Adults with Autism « Left Brain Right Brain - October 11, 2012

    […] a follow on to the article Survey of Services Needs for Adults with Autism, here is the press […]

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