READ THE HAT: How the Neurological Disorder of Autism Produces Social Disorder

The best way to demonstrate the truth of this is to start with an account of a gathering in Idaho, a state known to me only from the old Bing Crosby song, “Away Beyond the Hills of Idaho.” The Idaho gathering is a dinner with entertainment supplied by those on the spectrum. Above us on a platform twelve-year-old James (who has Aspergers) is finishing up his grand finale Karaoke, spinning first on his feet and then on his back—plump, blonde, and in ecstasy.

“I like rhythm,” he tells us as he joins our table, snapping his fingers from the recollected joy. “It’s like alcohol. Once you do it, you can’t stop it.”

Alcohol? Where did a twelve-year-old pick up that one? Has he had experience with alcohol or is it just his sing-song way of expressing his happiness? Aloud I agree with him and describe my own nights of driving home late at night after long band gigs, hollering lyrics at the top of my lungs, the music still ringing in my ears. I quote him Carly Simons’ number, “Music is a Natural High.”

“Yes, alcohol that’s addictive, but rhythm is good for you. You do it, you just can’t stop it.” James sighs happily, but after a moment adds, “Music makes me lose control. I hear a really good song I just dance, dance, dance… But still, it kind of makes me feel out of control.” He squirms in his chair, musical ecstasy beginning to churn indigestibly with the way he’s been told he ought to behave.

For James the balance between exuberance and decorum is a constant and vaguely threatening hazard. Though he’s highly intelligent and articulate, at ease with a word like “addictive,” he has gaps in his neurological wiring that mean he can never quite get the knack of what’s going on between people that they don’t put into words.

For example, the other day when he raised his hand in class and the teacher nodded to him, he pointed to the clock and said, “I want you to know you have two minutes left and you better hurry up.” He was right, of course, but to the teacher he was way out of line. Why? How? It was late, first thing’s first. But according to the mysteries of school room etiquette, something else comes first: something the teacher calls “suitability.” In her eyes, James (with his constant lack of it) is a non-stop, unidentifiable flying object.

How do any of us know what’s suitable and what isn’t? The curious truth is we don’t have to know. Somewhere in the lost eons of the past we acquired the neurology for it with the result that most children pick up social cues unaided, much as they know the difference between a dog and a cat. Nobody teaches them that either, they just know. They know, too, while still young and relatively helpless, how to endear themselves to others and just how far they can push them to get what they want. Negotiation is also built into our neurology.

But not for James.

In the case of his encounter with his teacher, no doubt he was bored, as many school children are, but bored or not, most children accept school room customs without any explanation. For James to accept any kind of custom, he has to understand it in the same conscious, intellectual way that he grasps the explanation of a new word. And then he must memorize it, as he would memorize the spelling of that word. Because this procedure is so much slower, James has to be allowed extra time. But even with extra time, the very process makes him anxious – which then requires extra patience on the part of his teacher. Will the two of them ever achieve any kind of class room rapport via such a roundabout, nerve-wracking route? The answer is probably and sort of. At heart James is a sociable creature. He likes people, he wants friends, but it’s hard work for both of them.

I doubt if we’re going to “cure” James of his missing neurology, not unless we think we can actually cure the entire human race of its quirks and lacks. The point is to support and guide him so he can live a full life – as he sees it. James is enormously appealing; one wouldn’t want to change that, and part of his appeal lies with his wildly eccentric responses. When the subtleties of a new situation escape him – and they often do – he manages to invent his own hilarious solution. Like his latest encounter with another teacher – a new one. It involved a long-standing permission to call his mother when he gets an anxiety attack. The agreement is that any time James has a new teacher, he must bring her a note from his mother granting the permission.

Sure enough, it wasn’t long before anxiety began to growl at James like a junkyard dog. He asked his new teacher if he could call his mother; the new teacher, as per her understanding, held out her hand for the expected note. James had forgotten it, or lost it, or crumpled it into a ball during his anxiety attack. The teacher asked him to sit down. He tried to, but the anxiety dog was crouching on his chair, teeth bared and snarling. James returned to the teacher, told her he couldn’t sit, he absolutely HAD to call his mother. The teacher, now fearing the loss of her authority, ordered him to “SIT DOWN.” Where?! How?! There was no way around that cur and there wasn’t time to think about it. James took off his baseball cap, wrote on the visor, “James has permission to call his mother,” signed his mother’s name, put his cap back on, strode up to the teacher, leaned over her desk so she could see the words, and said, “Read the hat.”

The story made the rounds of the faculty who, knowing James, were vastly entertained. But not the new teacher. Apparently – God knows how or why – she actually believed the words on James’s cap had been written by his mother. When she realized they were James’, she felt tricked. This shows how fast established custom can fall apart – particularly when exacerbated by laughter. It also shows what a tricky opponent an autistic child can be when anxiety overwhelms accepted social procedure.

While most of us encounter each other hour after hour, day after day in an endless, effortless stream of social exchange, people with autism (even with instruction) find the smallest of these exchanges nerve wracking beyond belief – a nervousness that’s increased by our uneasiness when confronted with their oddity. If we want to mainstream those with autism – and we do – we must, we have to teach the mainstream what to expect and why. Only then will everyone’s nervous system quiet down enough for us all to experience each other. And to my way of thinking, that would be a real gain. For James and for us.

In addition, could we please give an assist to James’s family? James’s mom is a single mom and her solo journey with James – despite the moments of hilarity – has never been easy. I don’t know why James’s dad left, but I know from listening to other dads how autism can swerve into a man’s sense of honor, leaving heavy black skid marks of shame.

I think of a Latino dad, whose son had an epileptic seizure in the middle of a conference. The man felt doubly dishonored – first, because of the shame-making public display of his son’s epilepsy. Second, for what, in that shame-making moment, he himself felt towards his son – a boy in whom he had hoped to see a next generation mirror of himself.

I think of a similar situation with an Asian dad as together we watched his twelve-year-old son crawl obsessively around and over every chair in the deserted auditorium. “What do we do if we can’t stand it?” his father asked.

Formal education for all children on the spectrum is invaluable, but it’s important to take note that ASD is primarily a male disorder, with a 4 to 1 ratio in autism, a 10 to 1 ratio in Aspergers. As these boys approach manhood they will look to their fathers for support and guidance. That means fathers must become involved and from what I’ve seen of fathers, chances are they will need help.

Since autism is a neurological disorder that produces social disorder, the goal is to help the entire family. It’s a goal worth emulating.

Eustacia Cutler, Author of “A Thorn in My Pocket: Temple Grandin’s Mother Tells the Family Story”

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