An open letter to some doctor somewhere.

2012-08-15 13:14

A friend of mine recently spoke to you about a possible diagnosis of autism spectrum disorders, and reports being dismissed on the grounds that without a cure, there’s no benefit to a diagnosis. This reflects a number of severe understandings of the nature of autism-spectrum disorders, the experiences that autistic people have, the kinds of treatments available, the role of medical care in a patient’s life, and more.

The concept of a “cure” is not entirely applicable; you can’t “cure” who you are. You can treat, or mitigate, ways in which who you are conflicts with the kinds of people the world is well-suited to containing, but you cannot change who you are; if you could, that would be “replacing you with someone else”, and most people do not wish to be replaced with someone else. There is no “cure” for autism spectrum disorders, but there are many treatments; treatments which help people function more effectively, and with lower stress. Furthermore, the mere fact of a diagnosis can be of immense value. As a strange person who was easily upset and didn’t know why, I had a stressful life. As a person somewhere on the autism spectrum, I have access to thousands and thousands of books and studies discussing common sources of stress in autistic people, and I can find things that are likely to be relevant to me and help me understand my problems. Meanwhile, having a label for the ways in which I am sometimes rude has made my friends much happier. It dispels the illusion that I don’t care about them, and reframes my “rude” behaviors as “unusually truthful”.

Furthermore, the essential character of autism spectrum disorders is an unusually large gap in competences between some areas and others; this tends to result in people overestimating, or underestimating, the competence of autistic people in particular fields. Most often, once they know someone is competent, they treat areas of relative incompetence as evidence of laziness or lack of effort, and become critical and insulting. After a few decades of being constantly told that you should try harder, and that if you were trying at all something would be easy, the information that actually it really is harder for you than people think it should be can be a great relief.

Finally, there is one other reason that autistic people may strongly prefer to have a properly-validated diagnosis: Because truth as an end in itself is important. This may sound strange, and I have given up on expecting people to understand it. If it doesn’t seem like it makes sense, well, it doesn’t have to make sense; it remains true that, to many autistic people, confidence that one has accurate information is of great emotional value.

Ultimately, I can’t imagine how it can be a good example of medical practice or methodology to dismiss a patient’s serious concerns so casually. I would not do something like that to someone who came to me reporting distress. And the thing is, I have basically no measurable capacity for empathy, I don’t really experience other people’s emotions, and I can’t reliably perceive distress in peoples’ faces or voices. What’s your excuse?

Peter Seebach

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