I have just started reading Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx. It’s a very recent book, having just been released within the past month. As part of my larger research, I’ve been looking at life writing by autistic people, across modality and platform, but especially that which is self- or independently-published (including blogs, CreateSpace chapbooks, and disabled-led presses like Autonomous Press). In the autistic community, we refer to autistic-authored works variously as autie-biography, autie-ethnography, or autistethnography (to borrow the latter two terms from folks like Irene Rose and Ibby Grace). Our community has a long tradition of employing personal narrative as a means of identifying and collectivizing autistic cultural practices, or trying to build notions of what autistic culture(s) is.
Hendrickx’s book is really riveting so far. (I’ve been reading chapters out of order, because certain topics have drawn me in, UFO tractor beam style.) In particular, I’ve been most interested in how she discusses the processes of becoming autistic, as in coming to understand oneself as autistic, or coming to understand autism as self-identity. Hendrickx has been in the field of autism studies for years and has long identified as an autism researcher. What’s relatively nascent for her, though, is identifying as autistic. At several junctures in the book, she recounts how she spent years researching and working directly with autistic people, completely unaware that she too was on the spectrum. In large part, she attributes her late arrival to an autistic identity with autism’s genderedness. As any autistic woman or nonbinary person will tell you, autism is often read, performed, and written both clinically and popularly as a “little boy” syndrome.
For instance, the world’s largest autism charity/corporation, Autism Speaks, purposefully chose the color blue for its signature logos and awareness campaigns (e.g., Light It Up Blue) to call upon imagery of autistic boys. There are even medical theories that proclaim autism is a case of the so-called “extreme male brain,” suggesting none-too-subtly that to be autistic is to be masculine or masculinized. A number of feminist and queer theory texts have (thankfully) problematized these male-centric theories and representations, including (but not limited to) Rachel Cohen-Rottenberg’s Autism and Empathy blog, the Queering Autism tumblr, and Jordynn Jack’s Autism and Gender.
Hendrickx interweaves her personal narrative with results from a survey-based interview study of 30 autistic women and parents of autistic girls. Of the many experiences that Hendrickx and her interviewees relate, one commonplace involves disclosure — that is, how and when to disclose autism — and the kinds of doubting responses one might receive upon making those disclosures. One chapter, for instance, is simply titled, “You Don’t Look Autistic.” Participants describe passing and compensation, or practicing behaviors that give the appearance of being non-autistic. But more interestingly, they describe the ways in which they very much are visibly and perceptibly autistic, yet still ignored or disbelieved by clinicians and larger publics for stereotypical reasons (such as being obsessed with topics that are culturally read as too feminine, and thereby non-autistic). Hendrickx likewise makes clear the toll that passing or mimicking can take on autistic people. Pretending to be that who you are not results in burnout, breakdown, despair.
June 18 is Autistic Pride Day, which just recently passed, and so far the message of this book seems rather timely and appropriate. Autistic identity is complex, in part because so many clinicians find it an oxymoron: if autism’s symptoms involve a lack of sense of self, then how can an autistic person claim an identity? But what Hendrickx and numerous others here argue is that autism is not only one’s personal identity, but a framework for a broader cultural movement. And rejecting or trying to eliminate that identity — which is so core to one’s concept of self — is to do real violence to autistic people and their families.
–Melanie Yergeau, Charles P. Brauer Fellow and assistant professor of English; 6/19/2015