Combating Ignorance

Mark Twain said, "It ain't what you don't know that gets you into trouble. It's what you know for sure that just ain't so." Nowhere have his words been truer than in the history of autism. First it was assumed that autism was the fault of the parents, specifically the mother. This went on for decades. Families were torn apart, children were tossed into institutions under the theory they'd be better in their parents' absent. There were two things that were particularly odious about that situation. One was that there was no evidence for it, but professionals just accepted it as true. The other was that a particular so-called expert named Bruno Bettelheim perpetrated it, primarily by writing a book called The Empty Fortress.

Bettelheim was not only mistaken, he was a fraud. He claimed to have a doctorate in psychology. He did not. His doctorate was in art history, and even that was eventually rescinded. Did the profession check him out? No. His word taken as gospel and disseminated to the general public through talk shows such as Dick Cavett. In 1964, Bernard Rimland published Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior, proposing that autism was physiological, not the result of anything parents did. He fingered the limbic system in the brain, which was incorrect, but his basic theory was true and there was much evidence for it. But in the eighties when my kids were being diagnosed, I was still being asked if I was worried about having money to raise my kids when I was pregnant, or resented them in some way. Some psychology professionals were still going with the psychological state of the mother as a cause. In the nineties, Bruno Bettelheim was still appearing on Good Morning America. Even though neurological symptoms had been clearly associated with autism, it took a long time for the truth to penetrate. In all that time, many professionals who were supposed to be helping those with autism and their families, were still contributing to their misery.

Well, we know better now. Do we? In 1989 a study came out declaring the revolutionary idea that children with autism really do love their parents. Well duh! This year one came out saying the same thing. Really? In decades, no one was paying attention to what had already been learned. I remember watching my younger son use a plastic sword and big rubber gloves from under the sink to play Don Quixote, after seeing Scott Bakula play him on Quantum Leap. The problem was, that at the time, the experts had proclaimed that autistic children don't indulge in imaginative play. Uh huh.

So what do they say today? In many cases it is that kids must be hurt to alter their behavior for their own good. We've been there before too. In the eighties interventions based on Skinner's pigeons were riding high. Then people died. There was a backlash, with many forms of aversives banned in some states. Non-abusive interventions were found, like those outlined by John McGee in Gentle Teaching, or social stories, or sensory treatments by physical therapists. Some of these worked to some extent, or not, depending on the person being treated, but at least they did no harm.

But now it's back to the future. Things that were long ago established as unacceptable are acceptable again. Why? Money. There's gold in them thar hills. Parents of children with autism are now, and have always been, desperate not only to help their kids, but to make their own lives easier. They are fair game for any promise, proven or not. Schools unwilling to allocate sufficient resources search for cheap and easy solutions, whether they are proven or not. Those solutions also include medicating a large percentage of students, even if such medication has not been shown to affect long tern academic or social success. A pill is so much easier than a well executed plan suited to the unique needs of a child. Over time medications rise and fall in popularity as dangerous side effects, such as obesity, diabetes, and tardive dyskinesia(involuntary movement) are discovered. But there's always a new one, or an old one re-purposed as a new one. The drug companies rake in the profits and kids may suffer permanent damage.

So what's a parent to do? Some of you will hate to hear this. The buck stops with you, not with a teacher, school, doctor, therapist, or case manager. The first thing you have to do is develop a healthy skepticism for all of those folks, plus the popular press. If someone suggests a drug, research it. Find the scientific studies and by that I mean those with large samples and double blinds. If they don't exist, your child is a guinea pig. That may be what you want, but at least you'll be making an informed decision. If you don't speak science, find someone who does to translate for you. If you decide to go with something, keep up on it. New studies come out about efficacy and side effects. There is no shame in changing your mind when better evidence comes in. If your school isn't doing its job, call an IEP meeting. If that doesn't work, request a hearing. Better still, band with a group of parents facing the same problem. Districts only have the budget for a certain number of fights. If they get bombarded, they can and do give in.

Also remember, usually some symptoms get better, but autism doesn't end with childhood. If your sons and daughters grow up to be independent, if weird, be very grateful. But chances are very good that they will not. They will need support, and you are the one who will care the most about seeing that they get it. So take care of yourselves too. It is very likely that you are running a marathon, not a sprint. Don't exhaust all your energy out of the starting gate. You'll need it later. And never become complacent.

Check out my novel with an #ASD hero