Aspergers survey summary

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From: "Jeff Rudski" <[email protected]>
To: "Mark Marion" <[email protected]>
Subject: Re: Aspergers survey summary

Feel free to post it on Wrong Planet. If you can, add a line asking people to contact me if they want to participate (and mention that if they'd like to, they should contact me and take the survey before they see the results).

The same goes for family members. If you can direct them to the link for the survey that would be great, but re-iterate that if they plan on doing the survey, it should be done before looking at the results.

Thanks,

Jeff

>>> "Mark Marion" <[email protected]> 1/3/2007 12:07:50 PM >>>

Jeff-

May I post your summary at WrongPlanet? Also, may I forward it to family members?

-Thanks,
Mark
----- Original Message -----
From: Jeff Rudski
To: [email protected] ; [email protected] ; [email protected] ; [email protected] ; [email protected]
Sent: Wednesday, January 03, 2007 11:47 AM
Subject: Aspergers survey summary


If you are receiving this e-mail, it is because you requested a summary of the results from an on-line survey on attitudes and beliefs on Aspergers.



I have completed the initial analysis, and am attaching two different summaries. The first is written up "newsletter-style". I did this because several different ASA (or ASPEN) chapters requested a 750 word synopsis for inclusion in a newsletter (somehow, it worked out to exactly 750 words!). I figured that once it was written, I might as well give everybody a copy. I would request that if you intend to put the summary in a newsletter, please inform me so that I can keep track of where it is being printed.



The second is a rough statistical summary of the responses for all 70 items on the survey.



Please do not forward these summaries without contacting me first. They are part of an ongoing research project. If you wish, feel free to forward my contact information to anybody you think might be interested in the project and I will accordingly send them the information. Also, feel free to disseminate the link below to anybody you think might be interested in the project.



http://FreeOnlineSurveys.com/rendersurv ... brwx228138



As always, please contact me with any questions or comments,



Thank you for help.



Jeff Rudski

Associate Professor of Psychology

Muhlenberg College

[email protected]





SURVEY RESULTS



In Fall 2006, three students and I planned to examine possible differences in the use of mental shortcuts between people with Aspergers and ‘neurotypicals’ (those of us not on the autistic spectrum). We posted a request for participants on an Aspergers message board. To our surprise, much of the reaction was negative, with frequent expressions of frustration that their community was not recognized as consisting of people, but “subjects”. Consequently, we decided to try something new. Rather than creating a study where we set the agenda, we decided to ask people with Aspergers (i.e., ‘Aspies’) what they would like to ask neurotypicals. Specifically, we requested a list of questions involving common beliefs and attitudes neurotypicals might hold with respect to Aspergers. Working together over several weeks, we created a 70-item survey which was eventually posted online. To date, we have received over 650 responses. This overwhelming response has allowed us to compare the answers of Aspies with other key constituencies such as parents and service providers.
While the media has recently been trumpeting the efforts to “find a cure” for autism, Aspies aren’t so sure. In fact, Aspies tended to disagree with the “need to cure Aspergers”, and were somewhat undecided on curing more ‘severe’ autism. On the other hand, parents and service providers tended to believe that finding a cure for the entire spectrum was important. Having a child on the spectrum (or even having a child with Down syndrome) was also considered to be significantly less distressing for Aspies than neurotypicals, and Aspies felt more strongly that such a child could have a fulfilling life. All groups did agree that should they feel distress, it would be most likely due to society’s treatment of people with autism. In fact, Aspies and parents alike tended to place similar amounts of emphasis on social mistreatment resulting in depression or job difficulties.
Aspies and neurotypicals differed on several other beliefs. Aspies disagreed to a greater extent on items involving Aspies valuing conformity, the benefits of broadening their areas of interests, and whether “stimming” detracts someone from paying attention. Aspies tended to agree when asked whether “individuals with autism can be very successful, even without therapeutic intervention”, while parents and service providers tended to disagree. Aspies also tended to disagree that “If given the choice, most people with Aspergers would chose to be neurotypical”, while neurotypical responses tended to be neutral.
The survey also allowed the mirror to be turned back on neurotypicals. For instance, Aspies tended to agree to a greater extent with statements such as “Most neurotypcials value conformity” and “Most neurotypicals care too much about group approval and too little about being true to themselves”.
Not all items produced different patterns of responses. All groups disagreed that Aspergers is a form of mental illness, an excuse for people lacking social skills, and all groups recognized that while Aspies may have difficulty expressing or reading emotion, they feel them deeply. Moreover, everybody recognized that Aspies are just as diverse a group as neurotypicals. In fact, for many items where there were ‘statistical’ differences, they were due to degree rather than direction. For instance, neurotypicals tended to “disagree” that Aspergers was a disease, while Aspies tended to “strongly disagree”.
These results suggest some important considerations in the treatment of people with Aspergers. When everybody is on the same page with respect to beliefs, shared goals tend to be more easily reached. However, friction can occur when attitudes differ. The majority of Aspies who filled out this survey (and there are 116 thus far) don’t want to be told that they need to be cured, or that their birth is cause for distress. It should be evident that phrases such as “defeat autism now”, and the “war on autism” can be dehumanizing to people whose sense of identity is tied to their own autism. Parents need to remember that their loved ones are going to be adults with autism/Aspergers for many more years than they will be children. As such, the voices of people on the spectrum need to be heard, and their attitudes and beliefs should be considered in drafting policy and therapeutic goals. Perhaps the mottos of “understand autism now” or “assist autism now” should gain in currency.
As a final note, presenting the findings for all 70 questions on the survey is not feasible in a newsletter. If you would like, I will gladly send you a more comprehensive summary if you drop me an e-mail at [email protected] .

Jeff Rudski
Associate Professor of Psychology
Muhlenberg College, Allentown PA