Some thoughts on suffering, “cures,” and ethics

Scott Alexander, a psychiatrist who has worked extensively with people with autism argues that yes, we do need a cure for autism:

Would something be lost if autism were banished from the world? Probably. Autistic people have a unique way of looking at things that lets them solve problems differently from everyone else, and we all benefit from that insight. On the other hand, everyone always gives the same example of this: Temple Grandin. Temple Grandin is pretty great. But I am not sure that her existence alone justifies all of the institutionalizations and seizures and head-banging and everything else.

Imagine if a demon offered civilization the following deal: “One in every hundred of your children will be born different. They will feel ordinary sensations as exquisite tortures. Many will never learn to speak; most will never work or have friends or live independently. More than half will consider suicide. Forty percent will be institutionalized, then ceaselessly tyrannized and abused until they die. In exchange, your slaughterhouses will be significantly more efficient.”

I feel like Screwtape would facepalm, then force him into remedial Not-Sounding-Like-An-Obvious-Demon classes.

I didn’t know that there was a movement against cures for autism, but Alexander objects to the notion that people with autism who spend much of their time banging their heads against walls or trying to chew off their limbs are that way because they’ve been treated badly. He argues, reasonably, that (1) some children with autism are that bad off at home with parents who love them and are doing their best, and (2) this society isn’t going to come up with fantastically functional institutions any time soon (see: nursing homes). His best point, the one I want to focus on, is this:

Let’s taboo whether something is a “disease” or not. Let’s talk about suffering.

Dropping the binary distinction that assigns various people various mental diseases or disorders would seem to me to be a step forward in our thinking about how the mind works, at least in many cases — I’m thinking of depression, for example. And I agree that it is far better to approach people by considering whether they are suffering than by assigning them an identity.

Autistic people suffer. They suffer because of their sensory sensitivities. They suffer because of self-injury. They suffer because they’re in institutions that restrain them or abuse them or just don’t let them have mp3 players. Even if none of those things happened at all, they would still suffer because of epilepsy and cerebral palsy and tuberous sclerosis. A worryingly high percent of the autistic people I encounter tend to be screaming, beating their heads against things, attacking nurses, or chewing off their own body parts. Once you’re trying to chew off your own body parts, I feel like the question “But is it really a disease or not?” sort of loses its oomph.

Here’s the problem, though: If you want to talk about a “cure,” then it seems to me you had better be talking about a disease. Continue reading “Some thoughts on suffering, “cures,” and ethics”