I’ve talked enough times about ageism in mainstream autism coverage, with a constant, unvarying focus on the very young, with little to no interest in the lives and stories of autistic adults, especially middle-aged and elderly ones. But I haven’t done as much talking about another mainstream lie in constructing the autistic identity that’s equally prevalent: The myth of autism as being only a part of life for middle-to-upper class* white people.
There’s a nugget of truth to that, just as there’s a nugget of truth to the statement “There are more boys diagnosed with autism than girls”. But if you scratch the surface of both of these, the same answer emerges, that the disparity has a lot more to do with social and cultural prejudices than anything inherent to autism itself. In the case of the United States, where accessibility to healthcare varies greatly, this statement and the racist, classist mentality that goes along with it becomes a self-fulfilling prophesy, with few autistic people of colour being studied as representatives of autism or given the chance to tell their stories in interviews and reports.
I remember working with a Native woman of Blackfeet and Little Shell Chippewa heritage on a disability project. She had a nephew who was autistic, and told me stories about him being misunderstood as being a “troublemaker” or “defiant” by his teachers, and given little to no help or resources to guide him through school, or deal with bullying, isolation, and learning difficulties. In fact, they dismissed his needs for accommodation and his family’s concern about being picked on entirely, because it was obvious he was the “real” troublemaker, since he was so antisocial.
I ended up putting a scratch in a leather chair when his aunt told me that news, clenching my fist in anger and familiar rage. It’s already well documented that children of colour are disproportionately more likely to be perceived as “unruly” and “disobedient” and that they get expelled/suspended at much higher rates than white children. When you combine that with a disability like autism, which manifests itself in behaviours that are not easily understood by close-minded people, that’s a horrid cocktail of prejudice which hurts their chances at succeeding in school and life.
What allistic adults chalk up to “unruly” or “defiant” behaviour is usually just a manifestation of some sort of sensory overload, but teachers regularly fail to spot this in children who have a diagnosis, let alone those who are left undiagnosed because of the healthcare disparity between poor and rich, white and colour, (sub)urban and rural. In my special needs classroom, I observed this type of “discipline disparity” first-hand, with boys suffering more than girls under this system, since they acted out more.
It’s not just teachers who fail at recognizing sensory avoidant/anxious behaviour in autistic people either; as the case of poor, poor Neli Lawson shows, it shows up in police officers, and it can show up again in probation officers, guidance counsellors, and other figures who are supposed to be benign helpers, if you look and act right, but who can excise undue influence over the way your life goes if you fail to conform to their arbitrary measures.
Whenever a survey is taken of statistics on autistic adults, I always wonder how many of them have slipped through the official count because they are in prison, diagnosed with antique terms (juvenile schizophrenia, anyone? Imbecility? General mental retardation?) or are homeless on the street, because there was no means for them to be given a diagnosis. There are adults who were diagnosed later in life, like Rachel Cohen-Rottenberg and John Elder Robinson, and I am sure there are more.
The great tragedy of whitewashing autism is that it downplays the value other cultural perspectives can bring to the national conversation about autism. Our cultures provide a framework through which we (and our families) view our disabilities and our minds, I will write more some day on how Judaism and Hawaiian and Blackfoot traditions influenced mine. In Nakota culture, a friend of mine explained that people with disabilities like autism are thought to have chosen to be disabled while they were still growing in the womb, as a way of cultivating a different spiritual path they could walk which would offer new and different insights. Other cultural perspectives enrich the conversation, and take us away from the standard disability as tragedy/disease model which has dominated it needlessly.
Like many parts in the picture of autism constructed not by autistic people themselves, the idea of autism being limited to white children is rapidly deteriorating with the help of dedicated bloggers and truth-seekers, and I look forward to the face of autism changing as the “voice” of autism does.
The mainstream may not take notice of autistic adults of colour yet, but the blogosphere and the chance to attain information about autism, to answer “why am I different?” is closing the cultural and socioeconomic (and gender) gaps around autism rapidly, and giving new voices the chance to offer their views. Please consider this post an open invitation to promote your blog if you’re an autistic (or disabled) blogger of colour, or know a blog which is written by one.
* Of course, I am not equating class with race, I am aware of the existence of wealthy people/communities of colour in North America, and poor, rural whites. I lived along both, after all. But we can’t talk about racism or classism in North America without examining how the two intersect, and the legacy of racism, colonialism, and social/legal inequality impacting it.