Tuesday, February 12, 2008

look me in the eye

I was wandering through the library the other day and, on the New Books shelf, I noticed look me in the eye: my life with asperger's, by John Elder Robison (and now I see Mr. Robison has a blog, which I will have to add to my reading list). The book is, obviously, a memoir that focuses on life with Asperger's Syndrome. I've been interested in autism and autism-spectrum disorders for awhile now; oddly enough, a lot of the crackpot alternative "cures" for things like fibromyalgia and chronic fatigue are also billed as cures for autism, or are closely related to the "cures" for autism. Techniques like the elimination of metallic tooth fillings, or candida, or mold in your house, the use of acupuncture, or massive doses of the vitamin of your choice, or eating only organic whole food, or positive (magical) thinking, are all sold as cures for both autism and fibromyalgia. There was even a scientist on the Chronic Fatigue Syndrome forum I used to frequent who hypothesized that a regimen of dietary supplements developed for autistic children was actually the cure for CFS (registration required). (As a side note, the Methylation Protocol did seem to have some effect, as it made some people feel slightly better before making them horribly ill. The world of alternative medicine is a disturbing place.)

Some of this overlap is no doubt due to the thinking of the sellers of these "cures," which is "medical science can't solve Problem X, so the solution for Problem X is clearly this bit of quackery that makes me so much money." But there is also this sense that both autism and fibromyalgia are somehow caused by significant systems in the brain going subtly wrong, and this, to me, is very interesting. This kind of connection makes me wish I could stand formal schooling long enough to have a chance at becoming a scientist on the cutting edge of research into these questions; how typical of the world that the pain that motivates me to ask these questions is the very same thing that keeps me from being able to find the answers.

The science of pain isn't the only thing that interests me in autism-spectrum disorders, though. Robison's stories of growing up with Asperger's reminded me very forcefully of what it was like for me growing up. Not that I think I have Asperger's; I know how easy it is to read a description of anything like this and self-diagnose, simply because the mind is complicated and diverse enough that whatever it is you're looking for there, you'll probably find it. However, so many of his stories that focus specifically on what Asperger's is are things I can relate to that the whole idea of Asperger's intrigues me.

For example, he writes about being yelled at for not looking people in the eye during conversations; no one ever really yelled at me, but I certainly agree with him that looking people in the eye is unnatural and weird and uncomfortable. He talks about learning to drive, and then having problems driving and talking at the same time; when I'm in traffic and my husband is sitting next to me and he tries to talk to me, even to give directions, I ask him to stop because the distraction makes me panic, and I even have to turn down the radio so it's quiet. I relate to his description of how being petted- constant gentle physical contact- is so soothing to his nervous system that it keeps him from fidgeting without even noticing it, and some of what he says about how he relates to machines reminds me of the way I used to relate to political ideas, before I got hurt. The usefulness of training oneself to converse in ways that other people will find normal is something that I discovered as a teenager. Also, the clarity of focus that he describes as part of his savant-like ability to work with sound circuits is something that I have experienced. The single-minded abstractness required to work at a certain level of brilliance is something that I had, on occasion, but that I've lost since fibromyalgic fatigue clouded my thought processes.

The most emotional parallel between my life and Mr. Robison's life, though, is his stories about making friends as a child- or rather, failing to make friends. The bewildering emptiness of being unable to connect with the people around you, the desperate loneliness of knowing that the people you want to be friends with think you're weird and alien, all of that is very familiar to me. My childhood was, if my memories are accurate, thoroughly unhappy. It is tempting, as my brother said in comments on this post, to blame that unhappiness on my external situation, on the church or the school or the kids at school or my parents, but if I am quite honest with myself the truth is that nothing in my childhood, including my parents' religion, did quite so much damage to me as did my failure to make friends.

It's enough to make me wish that when I was young, someone had told me that I had Asperger's, even if that diagnosis wasn't justified. If I had had a diagnosis to explain why I felt no connection with other people, would I have believed for years that there was something wrong with me that made me impossible to love? I don't know. It's impossible to know what things would be like if the past was different, but I can't help but think that if someone had just recognized that I had a problem I could have been a whole lot happier.

1 comment:

John Elder Robison said...

For me, self reflection and insight are two of the best "cures" I've found. It sounds like you are on the way there yourself.

In addition, I've been helped by eating a healthier diet and getting somewhat more fit.

The best thing, really, is a positive attitude.