I was going to write a long, detailed post directed at MIT about their announcement of a new Center for Autism Research, which will be focused on lifting the “burden” of autism and developing “methods to better detect and potentially prevent autism spectrum disorders entirely.”
I was going to talk about how, scientifically, any approach to a complex problem requires using the correct model, and explain that I think they’re using the wrong model of autism — a pathology model rather than a neurodiversity model. I was going to pull quotes from articles about this new center (as well as the existing autism research going on at MIT, which is already along the same lines) and contrast them with quotes from MIT’s president about inclusion and respect for students of all backgrounds.
But I’m just tired of it all.
I understand that our whole society pathologizes difference: there are still people who argue that darker-skinned people are genetically inferior, and people who claim that LGBT folks need to be cured. It’s no surprise that differences in brain “wiring” are also treated as defects to be eradicated — but just because it’s no surprise doesn’t mean I’m not angered by it.
Never mind that the real “burden” of autism is the burden that society places on the different — a burden that often leads to anxiety, depression, and other co-occurring mental health issues. Research to lighten that burden would be welcome. Research could also alleviate symptoms of other co-occurring physical conditions common on the autism spectrum, such as epilepsy and gastro-intestinal problems. This sort of research could do a lot to benefit autistic people directly, rather than playing into a conception of autism as an epidemic, as some sort of blight on society.
I would welcome research that would help me understand the details of my particular neurology, and that could, for example, help create strategies for managing sensory overload. Or we could have research into technologies to help autistic people who don’t communicate in standard ways — or whose sensory systems are perpetually on overload — to better have their needs met. Research like that, based on understanding the experience of autistic people, could also go a long way toward dragging the rest of society into a new understanding of both our strengths and our struggles — and maybe help create a place where we could fit in without trying to fit ourselves into the wrong mold.
The problem for MIT, I think, is that many of these are likely to be social fixes, not technological ones, and MIT is all about the technology. It’s right there in the name, you see. But some things don’t have technological fixes, they only have societal ones. We don’t, for example, try to solve white supremacist racism by genetically “fixing” all skin color to be the same shade — we recognize that the problem lies in the prejudice of others, not in the individual’s possession of dark skin.
None of this is likely to change the course of autism research, at MIT or elsewhere. But as an MIT alum myself, I’m disappointed that they can’t seem to see beyond the mainstream view of autism. And as an autistic person, I’m dismayed that they see something so intrinsic to me as my entire way of thinking, and of experiencing the world, as nothing but a burden on society. I haven’t felt particularly connected to my alma mater in the time since I graduated, but I surely feel more alienated from it today.
Now riddle me this:
Is that alienation due to my neurological deficits? Or theirs?