The first time someone told me, “You Can’t Be Autistic,” I was 21. It was 2007, and I was partway through undergoing formal diagnostic testing for DSM-4-defined “Asperger’s Disorder“.
“You’re Not Autistic.”
The process for me even getting that testing was atypical for a few reasons I won’t go into now, but also because of this: Although the therapists working with me at my Community Mental Health Center (CMHC) were both skeptical that the results would show me to be Autistic, they didn’t say they were sure I wasn’t. They forwarded my request to the relevant diagnostician and I began the process in Spring 2007.
Since I was already receiving services through my private college’s under-resourced student support services because of difficulties I’d had since before my ADHD diagnosis, I informed them about this testing I was undergoing. (I was somewhat naïve.)
During that time, I was also preparing to spend the summer in Germany as part of a college requirement called “Study-Service Term” (SST). I had barely interacted with the professor who would be leading my SST class, but I had been a year ahead of her son in high school and knew he was Autistic. She requested to meet with me in her office a few weeks before we were due to leave.
She told me that someone (I still don’t know who, but I have my suspicions.) told her that my personal hygiene might be a concern on SST. I was stunned and didn’t know how to respond. She also told me that she knew I had been undergoing testing for Asperger Syndrome. She informed me that I wasn’t Autistic, because if I were, I would have just got up and walked out of the meeting.
I don’t remember how that meeting ended, but the parts of that summer when I had to interact with her were not fun.
I didn’t get my results until after I returned from Germany and was studiously avoiding that professor. I was formally diagnosed with Asperger’s Disorder. (This has since been updated to DSM-5 compliant Autism Spectrum Disorder.) That was my first indication that a lot of people think they know a lot more about Autism than they do.
The #YouCantBeAutistic Project
When I began being an active part of Autistic community on Twitter almost three years ago, I started hearing more stories of people being told “You Can’t Be Autistic.” The reasons were often ridiculous. The people saying them were often in the position to provide a barrier to formal diagnosis (when desired)—and frequently did.
I decided a while ago that I wanted to compile some sort of record of Bullshit Reasons People Have Been Told They Can’t Be Autistic. This week, I started on the project. It consists of a survey, which takes an average of about 5 minutes to complete, and a hashtag: #YouCantBeAutistic.
The hashtag existed prior to this project, but I could find only two instances of its use on Twitter. I checked with the person who’d first used it and they were fine with it being used for this.
The survey is the thing I’m most excited about. I’ve heard a lot of #YouCantBeAutistic stories on Twitter, but a compilation has the prospect of many possible uses. I’m not entirely sure what I’ll do with all the data yet, but getting it is a start. I’d like to at least share some of the stories and common reasons people are given in future blog posts. I might also make an edited version of the raw data available to other researchers, but in that event, I plan to obscure the names people gave me to protect identities.
I hope that Autistic people will use the #YouCantBeAutistic hashtag to both share their own stories and thoughts and to spread word about the survey (on Twitter, Facebook, wherever). It’s currently open indefinitely.
Fifty-One Thank Yous and a Note
Thank you to the 51 people who volunteered to test the first version of the survey yesterday. Your feedback was invaluable and helped me make necessary improvements.
I apologize for not making it clear at the outset (because I hadn’t quite thought it through that far), but you WILL need to take the survey from the link shared in this post and the new Tweets again if you’d like your data to be counted. (I’ve taken down the Tweet linking to the test version of the survey.)