Autistic in academia (or how I ended up inadvertently studying myself)
“Many of us will become interested in psychology and the helping professions along the way, either because of our diagnosis or in search of it. We find we want to nurture and help others in their journeys because we know how hard it can be.” ~ Rudy Simone, Aspergirls
I am a PhD student whose primary research interest is the social experiences of autistic young women — the supports available for them and their everyday experiences. I am also an autistic woman — this is not a coincidence. In undergrad, I remember writing my freshman seminar paper on the consciousness-raising groups of second-wave feminism. These second-wave feminists spoke of how “the personal was political.” They saw how their individual experiences were reflective of community-wide issues.
For me, the personal has become academic. I first started reading about autism, specifically Asperger syndrome, because a friend of mine in undergrad had mentioned her diagnosis. Rather than be the person who asked nosy questions or said something unintentionally offensive, I decided to pick up Tony Attwood’s The Complete Guide to Asperger Syndrome. I read it cover to cover, and then began collecting blog entries and online articles in a folder on my computer. Perhaps I identified with the experiences of individuals on the spectrum, but I don’t think I realized that at the time. I just found the subject fascinating.
It wasn’t until grad school, after I was asked if I ever wondered about being on the autism spectrum, that I started to consider the possibility that I was autistic. I have a bachelor’s degree in psychology, so my first concern was that I’d somehow convinced myself that I was autistic: “What if I have psych major syndrome?” (like medical student syndrome – when med students become convinced they’ve contracted the ailments discussed in class – but for mental health conditions). I called my friend who was a special education (SPED) graduate student while I was in undergrad.
Me: When you first met me as a freshman, did you ever wonder if I had Asperger syndrome?
SPED Friend: That thought crossed my mind, but I noticed how well you got along with the students I mentored, so it didn’t really matter.
During the spring of 2013, I read everything I could find about the experiences of autistic women, starting with Rudy Simone’s books and later finding autistic adults’ blogs. That was also my first semester in the PhD program. As I read about autistic adults’ experiences, I suppose I was weighing them against my own. I remember talking with my SPED friend and her noticing I seemed less afraid of identifying with the Asperger label.
It was a strange time because from reading the academic literature, I knew Asperger syndrome would be absorbed into the autism spectrum that summer. What would I call myself then? I settled on Aspergirl — it was safe, perhaps because it was never a clinical label. It was a portmanteau (Asperger + girl) created by another autistic woman. I kept writing for myself, while I read about the experiences of autistic young adults in my coursework.
This summer, both of my research projects concern the social-emotional experiences of autistic women. When asked how my research interests developed, I’m running out of ways to allude to my autistic self. At most, I can mention my friends with Aspergers or how I identify with this population when I talk with fellow educational researchers. I wonder if it would be easier to be ‘out’ (of my autism closet) if I had a clinical diagnosis.
There’s one person in my department — my PhD mentor — who knows I’m autistic. She has been amazingly supportive, but sometimes I imagine what it would be like if I could openly acknowledge this part of myself.
“I am an autistic woman whose research is directly informed by her lived experiences.” Now if only I could say that aloud more often.