By Dan Olmsted
One of the great ironies of autism is that a “disorder of affective contact,” as it was called the very first time it was described, has led to quite the opposite – to a community of people who care so much about each other, about their children and about the world they will inhabit.
This realization has been dawning on me for a while, but for some reason a number of recent posts, comments and interconnections have made it especially vivid. I think the Father’s Day posts and comments, Abdulkadir Khalif’s Autism One reflections and Kent Heckenlively’s idea that we are all “Friends of Jenny” really drove the point home. To sit at a small computer screen and connect with so many people being so open, honest, intelligent and emotional – not sentimental, not self-indulgent, but willing and able to express exactly how they feel, as they feel it, whether that is joyous or painful or some inexplicable uncertain ever-evolving mixture – can be just overwhelming.
How did we get so lucky to have created a little outpost in cyberspace that would draw this kind of person and these beautiful expressions of what it means to be a deeply caring human being dealing with really tough things in really creative and courageous ways? I don’t know. I’m just glad it happened. The temptation to quote from various people’s words is quite strong – to mix up the poignant, the angry, the exhausted, the committed, the hilarious, the exasperated, the sarcastic, the dejected, the determined and the dignified voices in a way that shows exactly what I mean. But that would mean essentially repeating what you read and write, all of you, every day, and it could never recreate the flow out of which it continuously emerges, so I’m just going to stand back and let it all be, as The Boss once put it.
And the irony of it all! Here we are dealing with something that was first described in 1943 by a Johns Hopkins psychiatrist, Leo Kanner, in a paper titled “Autistic Disturbances of Affective Contact.” Many of you have read this – I recommend it – but the title really says it all. Something was disturbing the way those children related to the rest of the world from the very beginning of their lives. They weren’t retarded – deficient in cognitive skills – and they weren’t schizophrenic – lost in delusions and hallucinations. They were emotionally disconnected at a very profound level -- they were somehow not tethered to their parents, or other people, affectively. That word is a bit clinical, but it just means “affection,” and its absence was so acute it was “autistic” – from the Greek for autos, or self. These children seemed to inhabit a universe of one.
Leo Kanner – the dean of child psychiatry, the author of the textbook Child Psychiatry – had seen every kind of childhood psychiatric disorder, but he had never seen this before. He knew it was NEW, that it was important, that it deserved to be described and understood.
Unfortunately, although he got that right, he got something else wrong, terribly so. He said there were “very few really warm-hearted fathers and mothers” in that group of just 11 families. And as time went on he said worse things, and other people – doctors, scientists, people who should have known so much better -- said much worse things than that. It was a cascading mistake that came from a simple misunderstanding of the clue buried just beneath the surface in those very first cases. The parents were well-educated, they were accomplished, they were doctors and psychiatrists and scientists and lawyers, and Leo Kanner thought they were aloof and abstract and preoccupied with their careers and their calculations. He thought they were deficient in affective contact, in other words, and their children’s disorder was a kind of funhouse mirror reflecting and distorting that lack right back at them – the instant karma of developmental disorders.
What was really going on was far, far different – and much less interesting, actually, from a psychiatric point of view. Those parents were simply the first to encounter the new generation of mercury compounds that caused the new disorder that came to be known as autism. (See Mercury Rising on our home page). They had the medical and research jobs, the family backgrounds, that made them early adopters of those compounds, that led them to vaccinate their children because they cared about them, to bring them, sometimes at great effort, to the leading child psychiatrist of their day. “The thing that upsets me most is that I can’t reach my baby,” the mother of “Case 9: Charles N.” told Leo Kanner. This is the voice of someone longing for affective contact.
Of course, blaming the parents is supposedly ancient history, but as I have said before, parents still get the blame, and they still get it from the same “experts” in medicine and science who have already been so terribly wrong for so terribly long. Now it’s the genes, you see, and it’s the rejection of the “wacky” (see Newsweek on Oprah) idea that parents themselves know what happened to their child and can actually try to fix it.
One thing I’ve discovered is that, while this “disturbance of affective contact” is the supposed hallmark of autism, so many parents tell me that at least when it comes to their own child, that’s not it at all. Their children do connect, or try desperately to do so. Something else is going on – sensory disarray, physical pain and illness, emotional dysregulation, massive anxiety manifesting in ways that combine to block the flow of what is already there, undiminished and undaunted. (That’s what high-functioning autistic people say, too, according to a recent study.) What’s there can be freed, and in many cases and to varying degrees, that is happening.
So to see how freely that affection flows between the people who make up our universe at Age of Autism, to get caught between laughter and tears and outrage and isolation and deep connection, all by the time you’re done reading one post and the comments that come after it – well, good grief. And how ironic.
Dan Olmsted is Editor of Age of Autism