A few months back, I watched this video, and I found it very thought-provoking.
Essentially, what I hear Dr. Grinker saying, is that the concept of “autism” is a cultural creation, laden with all the criteria and aspects which the dominant culture deems important.
As someone with a cultural anthropology background, this idea intrigues me. I was a German-Anthropology double-major at uni, studying for 2 years in the US and 2 years in Germany at the University of Tuebingen (which — I discovered years after I left –has a pretty solid reputation in terms of anthropology). So, cultural context and the ways that the dominant mindset interplays with and fosters phenomena in people’s minds and lives is always in the back of my mind.
Heck, I’m an autistic woman, so of course I’m going to be intrigued by this stuff. If you want to get stereotypical, autistic boys are “little professors” and autistic girls are “little psychologists”. Of course, there’s bound to be overlap — you can cross that gender divide any ol’ way you like, and it’s perfectly fine by me.
Anyway, the more I think about this concept that “autism is a cultural construct”, the less I agree with it. I’ve long been convinced that we autistic folks have our own culture, our own ways of being, and the things we find compelling and meaningful are likely to appeal to us because we are autistic. We aren’t autistic due to the neurotypical identification of our “condition”, any more than species in the Galapagos Islands were invented by Darwin when he first documented their existence.
Let’s not get confused about this, people. Just because you identify and name something, doesn’t mean you have rights to it, or you own it, or you get to define it. All you’ve done is identified it, placed a label on it, and granted it (dubious and frankly unneeded) permission to occupy your thoughts in a systematic way.
Autism isn’t something that was invented by Asperger or Kanner, or even the other guy (Eugen Bleuler) who apparently coined the term “autistic” in … what?… 1911. No, Kanner wasn’t even the inventor of the term, nor was he the discoverer of autism. He was some dude who had a knack for recognizing the value in obscure but useful concepts, and turned that raw material into his own gold. ’nuff said ’bout that guy.
Autism wasn’t invented by anyone. Nor is it the domain of anyone who thinks they can (or should) cure it or fix it or do whatever with it. Autism has always been. It just hasn’t always been recognized. Just ’cause a bunch of people have been staring at their shoes for aeons, then suddenly they look up and notice the beautiful sunset, doesn’t mean they get to decide what the sunset means, what to do about it, or who has access to it.
Likewise, the idea of anyone declaring autism a cultural construct is telling. It’s telling that it comes from a straight, white, neurotypical male in academia. How presumptuous. And how clueless. He may have an autistic daughter, and he may have written some book(s) about the subject and studied autism in different contexts, but seriously… calling a distinct neurotype a veritable invention of the dominant milieu… yah. No.
I am especially convinced of this, as I did a couple of family visits with my autistic parents in a very autistic part of the United States, where they’re just starting to understand autism as something other than an extreme, mentally debilitating condition. My father is ill with a still-to-be-diagnosed condition, and both of my parents (being under duress) have become increasingly autistic along the way. But to them — and their friends — they are wholly and entirely normal. They behave “the way people are supposed to behave” and that’s that, as far as they’re concerned.
I spent a fair amount of time, on one of my visits, discussing an article about autism which my parents read and discussed with their (ultra spectrum-y) book group. In no conversation, other than one about my aunt, did the idea of anyone in our family being autistic come up. I haven’t discussed it with them. They hew to the classic, post-WWII understanding of autism. Frankly, they’ve got enough on their minds that needs processing.
Knowing what I know, seeing what I’ve seen, I firmly believe that autism is a specific neurotype. It is, in itself, not necessarily disabling. Now, what the dominant paradigm considers “autism” is actually the symptoms of the condition, exacerbated by a number of factors (genetic, environmental, social, cultural, interpersonal, etc). I also believe, having grown up in an area where autistic behavior and traits were/are the norm, rather than the pathologized exception, that even in the face of acceptance, the autistic neurotype still retains its distinguishing characteristics. It still lays the foundation for the classic issues that arise (and are pointed out in the DSM-V). However, in an environment where autism is the norm, there are specific cultural supports and accommodations which are naturally extended to individuals. Those supports are every bit as remedial as are found outside the community, but they’re not extended as part of a specialized response to a pathological disorder, rather just something you do for someone to help them out.
In the area where I grew up, in my extended family, as well as our immediate rural community, autism is simply another way of being. And there are specific supports and responses to its challenges, which are woven into the fabric of the subculture as part-and-parcel of that way of life. It’s not pathological, it’s not embarrassing. It’s just how people are with each other and the world around them.
But if you view it from a distance, the characteristics are every bit as autistic as any you’d find identified outside the normalizing context.
Based on my upbringing and the last 20 years of actively exploring the nature of autism in my own life, I believe that autism is actually very much “a thing” in itself. When it’s accepted as simply another way of being, autism retains its nature and characteristics (and challenges) — but the community incorporating it is transformed.
So, it’s not a question of a culture inventing autism. Rather it’s a culture learning to recognize a part of itself that it may have never noticed before… putting a name to it, trying to understand it, and figuring out how to incorporate it (or, sadly, in some cases, eradicate it). It’s a question of culture creating a disorder — which should never be confused with the autism, itself.
Is autism a cultural construct?
Nah. But autism does a great job of constructing culture.