A little black box sits on the table. It has a switch so you push the switch to see what the box does. It begins to vibrate and hum. A little trap door opens in the top, a ghostly hand comes out, reaches over and shuts off the switch, and goes back in the box. Snap. The trapdoor is shut tight again. You used to be able to buy these out of the backs of comic books.
Autism is a black box. Mysterious -- and determined to stay that way by staying shut up inside while everyone circles around trying to find some kind of aspect they can get hold of. In the first place we want to know the state of being of the person. They won’t interact with the “outside” world for their own internal reasons. They are a medical problem that no one can figure out, but we believe there’s a person in there. If you’re the parent, you badly want to get your child out of that black box so you can relate to them, love them.
One approach is to create a safe place and be patient. You sit with the box and talk to it, keep it warm and fed, just BE with it, until one day the trapdoor opens up a wee bit and you can see two eyes peering at you. Or not. Part of the problem is taking care of yourself in the outside box created by determination to stay put and be patient.
People understand things by putting them into categories. In the very earliest days of humans, the categories available included the possibility that such a black box was sacred, because it’s mysterious. Or if you live in a more pessimistic and suspicious age, one major category was the devil or witchcraft. When the case of a 12-year-old boy who seems by modern diagnostic measurements to be severely autistic, Martin Luther thought he was “a soulless mass of flesh possessed by the devil and suggested that he be suffocated.” (Does that echo for you what it does for me? AIDS sufferers in the last stages being helped into death by their partners? Luther was not acting out of compassion, but out of fear and condemnation. That persists.)
In the eighteenth century people were more compassionate, thinking that such children had been raised by wild animals. In the forties the category was separated out from “schizophrenia” (already a troubled category) and named “autism,” drawing on the Greek prefix “auto” meaning self -- the box turns itself off. Bleuler, the man who invented this term described it as “withdrawal of the patient to his fantasies, against which any influence from outside becomes an intolerable disturbance.” The category of Asperger Syndrome came from a different man, Kanner, who spoke of “autistic aloneness” and “insistence on sameness.”
Once these guys gave up the idea that the hand shutting off the switch was just being ornery and was in there in that box doing something narcissistic, they looked around for a new culprit and decided on Mom. IMHO it was a fluke of timing, part of the backlash against Mom Worship during WWII, and also a period when the influence of child-raising practices were in question, the rigid Teutonic discipline that made good soldiers being contradicted by Dr. Spock, who said, “Pick that baby up and comfort it.” The demand in the Fifties was for that ghostly hand to come out here into society and develop a nice personality. (“Or I’ll give you a licking you’ll never forget.”) I used to lock myself in my bedroom literally. Now I live in a little house in a small village and sit at the computer all day. Same thing. Except I really AM doing something narcissistic and coming out for pie and coffee would destroy my blood glucose level.
When one looks through lists of symptoms of autism, they’re pretty fuzzy, hard to separate from other problems like fetal alcohol syndrome or the results of trauma. If a child has been trapped and raped, I expect a black box with a tight door sounds like a very good idea. But still, hopefully, we don’t think children make themselves autistic on purpose. It appears to be a processing problem in the brain, it seems statistically (if you can trust statistics) that it is inheritable but no one has been able to pin it to any particular gene or mutation. It is developmental, in that the baby starts out seemingly okay, but then gradually begins to accumulate deficits. Brains are so intricate (“symphonic” I say) that the problem might be in the chemical soup between neurons, in the characteristics of the neurons themselves, in the way they interact, in the failure to develop or the overdevelopment of the separating structures we are only beginning to understand. Though it feels to us like a psychological problem, because it expresses in behavior, there seems to be consensus that it is a glitch in the machinery of thought, emotion, and all that stuff behind the forehead that lets us interact with each other.
People confronted with a child who has this problem can become convinced that the problem is this or that (mercury preservative in vaccines has become a fixation) and, like a person determined to get into that black box by using sharp tools, have been so convinced of the value of chelation or special diets that they have killed the child. An artist friend of mine who is a gentle soul has turned to Blackfeet healing processes, small ceremonies of harmony like smudging sweetgrass, which is sensory and shared.
What I’m thinking is that the problem is in the epigenome, the newly discovered molecules closely associated with the double helix of the genome that control the turning on and off of the genes. The conductor of the orchestra, one might say: the inner clock of each cell that appears to guide the individuation of cells into organs and bones, to start up the growth spurts and then shut them off, and a host of more subtle interactions. If these things don’t happen in the right way at the right time, the result is vulnerability. A child who hardly knows where he is, cannot interact with others, becomes prey unless the larger creature, a social construct, protects that black box and addresses whomever that hand might be connected to. When the eyes peer out under the lid, they should see a friendly face.