A big part of my skepticism stems from the fact that I, as a person with autism, have been frequently targeted for a variety of false claims and promises of miracle cures. Everything from chelation to herbs was offered as a way to transform my grouchy, taciturn, stuttering persona into that of a bubbly neurotypical. But my skepticism is not always aimed at the usual targets. It's easy enough to see why I would rail against the likes of Andrew Wakefield and Jenny McCarthy, who have turned autism from being a hush-hush topic into an explosive debate surrounding, not the welfare of people with autism or how to improve their lives, but chasing haphazardly after something which isn't there, a single, definitive environmental cause which could, if identified, stop it in its tracks.
Doesn't work that way, folks. Plus, it's squandered endless airtime about autism on something which in the end, isn't even about autism. It's about the ego of celebrities getting out of control. But McCarthy and Wakefield found a comfortable audience in the first place amongst this society, which mainly understands autism through the Medical Model of Disability, or the belief that disability is inherently harmful and disadvantageous, which means much time is spent figuring out the two C's, cause and cure. Even when it would be cheaper and more convenient in the long term to simply modify attitude, behaviour, culture, disability awareness, and environment (My own ABCDE) the medical model dominates. That is why, in the less alt-med-soaked sectors, charities like Autism Speaks are still treated as the number one source of autism information. It's a problem that is not limited to advocates of chelation and oxygen chambers, the cause and cure attitude can be found in nearly every mainstream discussion of autism.
That is why I was curious and intrigued when I discovered that there is an entire subculture of New Age thinkers who believe that people with autism are not diseased, or even disabled. They consider them to be, depending on the interpretation, messengers of some type of God, psychics, people with special (read: beyond human, such as telekinetic or telepathic) abilities, or mind readers. Among those is self-diagnosed person with autism William Stillman, probably the most famous of the people promoting this alternative view of autism.
After years of dealing with the medical model, and endlessly being forced into a dunce cap for the sake of one charity or political cause or another, the tone of that seems downright seductive. Being told, after endless parades of doctors, discredited doctors, charities, and other organizations telling you that you are an empty husk, that you're "vaccine-sickened" or that only many years of ABA are your only hope to ever achieving happiness, that you are special, that you go beyond special into a category that's downright mystical and holy, can cloud a lot of people's judgements. Even the most cynical aspie like me softens at the idea of developing this new way of thinking that celebrates rather than vilifies autism and disability.
But I'm not going to leave this warm feeling unattended. For the next few months, or however long it takes me to do so in a thorough, honest manner, I am going to examine the literature and media surrounding this new age attitude towards autism. What can we learn from it, and how much of it is worth considering? Can elements of Stillman's philosophy replace the medical model of disability? Or are they both equally harmful in different ways.
If you have any recommendations on literature or media which reflects this type of thinking that you wish for me to review, please recommend it in a comment. I am going to try to look at this with complete honesty and as little bias as I can manage, while still maintaining a thorough and rigorous analysis.
I'm very excited that you're starting this project! This is an area I'm not at all very knowledgeable about, coming from a very skeptical, science-oriented family.
ReplyDeleteI found out about William Stillman when I was putting together my list of books by autistic authors --- he seems to be very keen on the idea that all autistic people are spiritually gifted, and have all these profound mystical experiences. I wasn't very impressed --- after all, *I'm* autistic, and I haven't got a spiritual bone in my body.
In general, I haven't seen anything to suggest that autistic people are any different from everyone else as far as religiosity and religious affiliation are concerned.
Thanks! I'm excited too, though I am hoping I don't have to give up any actual money to do this. Both the public library and the University library don't have many of Stillman's books, which is I suppose a good sign overall, but it's making my research difficult. I'm hoping I can rely on private donations of the reading material in this case.
ReplyDeleteWhat I'm hoping to learn most from this is how attitude affects the outcome of people with autism. Do the ones who believe they're psychic beings have an overall better chance at happiness and contentment than people who subscribe to the medical model or neurodiversity/self-advocacy mode? Does it affect their status in their community, physical and mental health, etc etc. That wouldn't necessarily be an endorsement of the idea that we're magic beings, but it would be fascinating.