My brother is a man trapped in ice. He looks at us through it; he is there and he is not there. Or more precisely, there is a fissure inside him that periodically freezes over. When he is present, his outline is more clearly defined; other times he’s submerged for a while. His focus is at times ten thousand meters high (he likes to watch planes cross the sky) or, when the ice is thicker, ten thousand meters inward. In addition to planes, he’s interested in trains, cars, dogs, cats, and birds. In his day-to-day life, the fissure within him leaves him stranded between one action and the next. But because his body is fully there, we have to make every decision for him. There is no outward indication of what’s going on inside him. Disability is basically what hinders someone from being self-sufficient and having skills society is willing to pay for (if we take this less literally, it could include many of us); therefore, you could say that he is simply different, that he has other abilities: freelance air traffic controller, attentive observer of the local fauna, silent but present companion. The lack of external signs is somewhat disconcerting to strangers when they approach him and he responds in a stutter. Luckily he lives in a small city, he’s known around the neighborhood and people generally take care of him if they come across him blocked, hesitating over crossing the street to drop the trash in the bin, one of his day’s few moments, if not the only one, when he is by himself.
“How’s it going?” I ask.
“Goodrealgood.” It comes out all in a rush, his typical answer to that question.
M has a catalogue of responses that help him confront social situations. That is how he’s learned to integrate into the world of others, a world where he has adapted over time, like a stranger in a distant land with an unfamiliar language. He knows that if everyone is laughing, he must laugh, and if everyone is serious he has to be serious. He only interrupts conversations in order to ask urgent and basic things, which he repeats in the same way each day at the same time:
“Should I go to the bathroom?” Right after meals.
“Should I drink water?” Once he’s sat down at the table.
Having a son like this, let’s be frank, is hard on my mother. I think sometimes she feels guilty, even though the origin of his problem is unclear. My mother and my brother, who is now grown-up and hairy (yet maintains a childlike innocence), have developed a certain interdependence. She hasn’t had a serious relationship since splitting up with my father more than twenty years ago. So she is a polar conqueror and pulls my brother along on a sled.
As a boy it wasn’t yet clear what was going on with him; at school he was just a bit behind in some aspects. Later the problem became more and more apparent. We don’t know what caused it, whether it was due to a complication at birth—he was delivered via vacuum extraction, was it a question of not getting enough oxygen?—or if it’s genetic, a thought that makes the idea of my having children fraught, even though there isn’t another case in our family. Some research suggests that it has to do with the fertilizers that were used in the sixties and seventies, because there was an uptick in cases, but the increase could simply be due to the fact that they’d begun to diagnose it. The studies on autistic spectrum disorders don’t clarify anything, and the doctors know very little. There are cases of genetically identical twins raised in the same home where one is autistic and the other isn’t. The importance of the various environmental and genetic factors is still unknown, and there are no biological indicators that can detect the presence of autism after birth. That has weakened my trust in science: for years doctors have given my brother different names, depending on the pathological trend at the time: first he was borderline, from borderline he became Asperger, from Asperger to autistic, and now, since the classification encompasses so many different cases, it’s called autism spectrum disorder (ASD). To me, this vague label seems like a path back toward uncertainty; the differences in behavior and appearance between the different cases are so vast that they often have very little in common.
When I came into the world, he was already there, and for many years his condition was an enigma, something unnamed. My older brother was diagnosed at the age of thirty. I was grateful to have a name for it, even one that isn’t entirely apt. And I believe that I’ve been able to talk about it more since then. It is very important that things have a name, otherwise they don’t exist.
The idea that the name often makes the thing is completely true.