Research Participation Opportunity

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Are you an adult who identifies as autistic, Asperger’s, or on the autism spectrum (PDD-NOS, etc)? Did you get diagnosed as an adult? In my previous research, I found that middle aged and older adults on the spectrum had much different experiences and relationships with the diagnosis than younger folks, and I would love to know more about that! I would love to hear your story about how you came to identify as having an autism spectrum diagnosis, including self-diagnosis.
You qualify for my study if you….
-are over the age of 40
-identify as having an autism spectrum diagnosis
-are willing to share your story of how you came to that diagnosis

Research on adults with autism who are not in dependent care is scant, and I seek to fill that gap.

The study will include an interview and oral history of your experience with the autism diagnosis. The interview will not last longer than 2 hours, though I expect most will be under an hour. Participants will receive a $15 Visa gift card as compensation. All participation and information will be confidential. Information will be anonymized for write-up and publication.

If you are in the New York City area, Pittsburgh, PA, the Twin Cities/Rochester, MN area, or La Crosse, WI areas, I'd love to talk to you in person. If not, Skype interviews are possible.

If you are interested in participating but do not want to be interviewed, I am also going to be piloting a related online survey in the very near future (will post the link when it is available).

You may PM me or email me directly: kjenkins at winona dot edu.

I'm 54. I live in NYC. I was diagnosed with autism and brain damage in the mid 60s.

I'm married, working--fully independent. I've had the same job for 35 years.

Thanks for your interest, Kraftiekortie. I'm really looking to talk to folks who missed being diagnosed or were misdiagnosed as kids and came to autism as adults. However, I'm going to be doing this kind of research for a long while (there is a lot we [in the academic sense] don't know about autistic adults, especially from an autistic or disability studies perspective), so I'll keep you/the community posted for further research opportunities.

BTW, for other readers, I know it says I just joined, but I have a personal WP account, I created a new one for research stuff. I was active on here before grad school, haha, and then that took over my life for the last tenish years.

I don't want to speak for kraftiekortie, but he has written on WrongPlanet.net previously about various childhood diagnoses which weren't related to autism, but were likely misdiagnoses based on observed behaviors at a time when autism wasn't diagnosable or even recognized. So, I wouldn't discount his diagnosis status quite yet.

For myself, I am 53 years of age, and was (mis)diagnosed from ages 15 through 20 years of age as having depression which I have always believed were mistaken. In January 2014, having just subscribed to Wired magazine, I completed the AQ test that the magazine published 13 years earlier ... just for fun. Well, the score was significantly beyond threshold, so, doubting it, I visited the University of Cambridge Autism Research Centre and completed a few more of its factor tests. All scored similarly beyond threshold. I thought, "really?!?"

Since then, I called myself "screened with" or "having" ASD or merely as an "Aspie." I have collected very detailed descriptions of my characteristics and behaviors based on published research. I was assessed in February 2014 by a clinician with little experience of adult ASD diagnoses. The test she used was a multiphasic test which has never been validated for ASD diagnoses. She refused to consider my screening-test scores and based two comorbids (GAD and OCPD) on the multiphasic test alone. My mistake was to mask socially (as I have done publicly since my college years). The combination of my masking skills and her lack of diagnosing adults made for another botched (mis)diagnosis.

So, that is the short version of my story. I am still undiagnosed and I might take another bite of the apple someday.

I live in Utah. I have Skype on my computer, but no camera or knowledge about using it. I can be very verbose in writing about myself and characteristics, and previous diagnoses, so that might work best for me, if you should choose to interview me. Of course, there is always the telephone. Where there is a will, there is a way.

Good luck with your research!

Thank you for identifying yourself in a clear manner. Some researchers do not and garner a negative response as a consequence.
Your approach was very concise and should serve as a an example of what TO do.
Thank you and good luck.

Thanks! As an insider to the community (or former insider, I suppose, still Aspie just out of the community part of it) I know the perspective on researchers in general, research in general. One of my goals of research is to put autistic voices and experiences at the forefront, not to impose a negative model on autism where there might not be a negative experience, or solely negative experience. Hence my interest in groups that are missing from the research literature. There have been a total of 6 (SIX!) articles in multiple disciplines published about autistic elders (over the age of 65). What? I set my lower age limit at 40 for a bunch of reasons (mostly having to do with changes in the diagnostic criteria, average age of diagnosis, changes in policy around services, etc), but that is a serious gap in literature. Let's fill it! With our voices!

Thanks David! I will be PMing you and Kraftiekortie soon about possibly setting up interviews. We could also possibly do a text-based interview. I prefer interviews rather than narratives so I can ask follow-up questions, but I"m also open to a variety of interview formats because I know folks have different preferences and needs.