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Living with autism

Above all, attention must be paid.

November 1st, 2011

BY LANE BROWNING

Well, the diagnosticians are working backwards. For years they’ve been giving autism screening tests to preschoolers, and this year came the big news of a “possible predictor” survey for one-year-olds. Babies. Eventually there will be prenatal tests and all the gnarly decisions those engender; but that’s a tale for another sailor.

On my child’s first birthday no one was thinking about autism. We his exhausted parents were sitting in a hospital room thousands of miles from home, waiting during his five hours of microsurgery. He weighed twenty pounds. Neurological and cognitive development concerned us not a lick; our focus was on the ambitious tumors around his eyeball.
A year later, though, the speech delay seemed a little ominous, and off we went into testing hell. Onto the testing carousel.

I’m in favor of non-invasive tests, if the tester is apprised and the interventions are risk-free — but parents need to know that diagnosis is not prognosis. In my son’s case, the fact that he couldn’t hold a pencil at age seven didn’t mean he wouldn’t later develop perfect penmanship. His inability to tie shoes or ride a bicycle until his early teens was no proof he wouldn’t become a talented (and ambidextrous!) high school athlete.

His failure to master defecation or escalators until age eleven didn’t mean he wouldn’t grow into a confident, world-class bus commuter. And all of the terrifying hand twirling, “animal sounds,” obsessive behaviors, repetitive speech, unshared activities, and closed-off mannerisms are backstory for the kid who is now the happiest, most resilient individual I know.

That’s not to say I disapproved of, or disbelieved, the tests. They were signposts, no question. But it would have been hard to anticipate the trajectory. When he was three I mumbled to his pediatrician, “I’ve heard there is hope,” and the doctor replied, his face a swamp of pity, “Not any that I know of.” Hell, he couldn’t forecast my son’s straight As and multiple math awards and inventions and musical gifts. He couldn’t know that one day a scientist in Europe would send a $2,500 diffraction grating “available free to teachers” because he thought, based on the emailed questions, that my twelve-year-old nerd was a teacher.

No, the pediatrician knew what he knew. Even he admitted that any one physician can read only so much; epidemiology was his passion. He found us good surgeons for the hemangiomas, and he pretty much punted when it came to autism. His concern seemed to be whether or not “the dad” would accept that he had a permanently disabled child. Apparently he’d seen a few dads who bridled — or denied.

There should be a test for that.

We never got a physician’s label. The school district called it only a non-specific class of deficits (poor self-care, obsessive interests, disordered speech, atypical social awareness). I think the term was “non-categorical categorical.” Seriously. Try slapping that on a bumper sticker or three-ring binder. My own copious research unearthed appropriate tags: hyperlexia, semantic pragmatic disorder, synesthesia. And we can laugh now about some of those tests he flunked.

One tester presented a sheet of paper with a trio of objects in its center. “Point to the smallest one,” she said. My son, who was three, put his finger on the wee number at the bottom of the page. It was a 1. Yes, he pointed to “the smallest 1,” but he didn’t get credit. I was impressed — OK, a bit dazzled — but the tester hadn’t seen that response before and noted only that it was incorrect, and wildly so.

What the young woman couldn’t know was that numbers, apart from being his obsession, were the scaffolding for his view of the world. There was a calculator embedded in that young brain.

They tested (and graded) him by noting that he didn’t “pretend to feed a stuffed bear.” Now that he is older he can say, “Talk about stupid, a thing made of cloth or rubber can’t eat, duh!,” but at the time, of course, we worried. We worried because he didn’t wave bye-bye (that one is such a biggie) or make pretend villages and scenarios, because he didn’t say “Rerr, rerr, rerr” when he rolled a car across the floor (in fact, he generally turned the car over and spun the wheels while examining the axle configuration). We bought him a doll and gave it a name and coached him to treat it as a “friend.” We talked to the doll ourselves, created names for his toys, pushed him, gently, toward compliance with the tests’ dictates.

Tests and more tests. Graphs and ratings and metrics. Everything was measured against “typical” development. Oh no, he’s 22 months old but has expressive language skills of a 10 month old. Oh dear, he’s five years old and performs at the level of a three year old . . . and so on. We had a growth chart (Sharpie lines on the wood) on the inside of a closet door; we could as easily have put a gauge on his head and marked off developmental milestones, or lack thereof.

Quirky boy tested poorly in “expressive communication” and “inferential comprehension,” in prosody and conversational turn-taking. He flunked the famous “Theory of Mind” test that bellwethers autism. (People forget, or don’t know, that “aut” refers to “self.” There is no tool for considering the perspective of others — empathy does not compute.) He consistently flunked so-called “social awareness” tests.

He passed, however, the self-taught reading test. One by one he correctly read “do, doe, does” as the teacher added one letter at a time. She said, “You’re right, he can read.”

Well, I knew that. His first spoken “word” was a letter. And he spelled words on the side of the bathtub when he was two. We discovered that if we said, “Go get your shoes” he had no response; but if we wrote on a piece of paper, “Go get your shoes,” get them he would.

Bizarre. I can tell you, very bizarre. We had never taught him to read.

And the math. Frightening the way he could do math, or the way he could toddle over to the little piano keyboard we had on apple boxes and play, unerringly, a melody he had just heard.

None of these things was on any test. They’re generally labeled “splinter skills,” not important in the grand landscape. Yet they were his razzle-dazzle. Starting early on, we heard “smartest child I have ever seen” and “How does he do that?” and “He doesn’t talk because he already knows everything.” His algebra teacher said, “In thirty years of teaching, I have never had a student like that. His brain goes places I can’t even follow.”

So while some of the testers feared he was mentally retarded, at the same time I was suffocating in how much he was mentally regarded. I didn’t really welcome the G word; I just wanted my kid to manage life’s basic tasks a little better, and stop licking his face into open wounds and grinding his teeth and dragging yo-yos everywhere he went, and repeating the same phrase over and over and spinning spinning spinning everything he touched. Could that boy spin: not just tops and disks and jacks and bowls and CDs but paper clips (yes, really) and his eyeballs.

Testing, testing….

For young children with autism, all of life is test enough. Simple processes can be extremely difficult. This was summarized brilliantly by my son’s therapist, Judith Bluestone, who said that her HANDLE therapies were about “teaching extraordinary people to do ordinary things.”

Yes, feeding a stuffed bear, and playing peekaboo, are ordinary things. So is smiling at a stranger or family member. So is asking for comfort after an injury. (He didn’t. He camouflaged injuries, as would a wounded animal wanting to avoid alerting predators.) So is sharing an accomplishment. He didn’t share.

He didn’t want attention.

They tested his hearing. It was disheartening when he passed, because an auditory deficit would have excused his not responding to his name. But no, his hearing was fine, he was simply (I know now) overfocusing on whatever his task was, or he was doing (I certainly do know now) math calculations in his head, or hearing the pitch of the timer or beeper or teacher’s voice or fluorescent bulbs or electrical current behind the walls, or counting the angles on the tile pattern segments, or transposing a melody. With all that was going on in his head, it’s a wonder he could function at all.

Not responding to his name was of course very good practice for being a teenager.

There were tests, too, for fine motor skills (subpar) and large motor skills (within normal range but hampered by physical uncertainty). I have reams of test results in my office upstairs, where I never go. I see the deficits and scores and remember the years I spent studying and researching and agonizing, looking into the face of my sleeping son trying to tease out what was in his head. I asked him “Can you see me?” and got in response “I see me.” Pronouns are so tricky for kids with speech disorders. It seems quaint now, through the prism of years. At the time, it was shattering.

Yes, the journey was often nightmarish. I communicated with (and encouraged) hundreds of parents. I edited books about autism and worked closely with Ms. Bluestone, who really understood my son; but what I did, behind all of it, was get the equivalent of several PhDs in one organism: the one I was raising. He was the guide, and now that he is older, if I tell him how sorry I felt for him, and how concerned we were, and how really tough it was for him, he says, “But maybe I wasn’t unhappy in there, I was just thinking about stuff.”

Indeed. He was not merely thinking, he was integrating. When he saw two sticks on the ground and said, “They make an 11,” he was ignoring what typical children would have seen in the woods that day, but he wasn’t oblivious to it. Like any of us, he was focusing on what most interested him, but peripheral information got in too. The first time he used his toddler potty he said solemnly, “My poop is in the shape of a seven.” Well, uh, OK, yeah, it was true (I have a Polaroid of it). I don’t know what a tester would have said about that.

Cued by the test results, we got him occupational therapy and neurodevelopmental exercises and speech therapy (which seemed like a wonder drug, so dramatically did it unlock his vocabulary) and “dyad practice” with similarly odd children. Without knowing it, we did some things right; and certainly we did some things wrong.

Testing testing testing. Could he suck through a straw? Could he track with both eyes? Could he balance on one foot? Could he sustain eye contact for 1.4 seconds? Could he, would he, point for shared reference? Could he initiate a question? Could he laugh at the right place in a cartoon? Could he understand irony or sarcasm or anguish or compassion? Would he sustain at least two conversational turn-taking exchanges?

Would he ever — ever — say “I’m sorry” or “I love you” and know what it meant?

Autism is high-profile now, so parents and their disordered darlings don’t huddle on the murky margins, at least not in “enlightened” areas of the world. There are pediatricians with autistic kids of their own, and they want more, and better, tests, year by year. First the label, then the … pill? No, no pill. A positive “test” result would net a prescription for more tests and for “hurry up” interventions. “Early early early early,” the experts chant; you have to get the brain when it is at its most plastic.

So here is the test for babies. Get ready. Get ready parents and babies. I try to imagine how differently I would have treated my infant had I known he was autistic, or “destined to become” autistic. Would he, at age two weeks, have been ready for pushy encouragement toward eye contact? Would he, at three months, have tried to repeat a sound or gesture in turn-taking rotations (he did at that age mimic perfectly musical tunes; he was born with absolute pitch)? And what might I have compromised or undermined if I had “intervened” so early? As it was, I had precious little optimism, but I pressed on, because there was no bus ready to take me to glorious oblivion.

I did practice controlled denial, in carefully rationed bursts, and I recommend it.

We navigated the tricky path between accepting who he was and nudging him toward what he “needed” to be, and eventually the test scores improved, and then there were no more tests, other than the ones he breezed through. The boy who would be lost, the boy who spun from one fixation to another (spirals, lenses, pinwheels, prisms, superballs, marbles, fractals, ramps, Platonic solids, trebuchets, Archimedean solids, calculators, and so on) turns nineteen this week, and some of the tests were accurate and some were not.

Though he stumbled and regressed and sputtered, though he got no “services” until nearly age four (infant testing was not an option), he has never stopped moving forward. He is different from his peers — OK with being so (in junior high he developed the rejoinder “I’m weird, get used to it”) — and I do wish we had known about autism sooner, but the boy who hated leaving home (or even his chosen corner) goes anywhere and everywhere, entirely on his own, with no trepidation. He was called to the stage five times during his high school awards ceremony and voted “Most Likely to Rule the World” by his classmates, though he has no megalomaniacal aspirations. He’s an enthusiastic college freshman, dorm-ensconced and scholarship-abetted.

But many of his earlier-diagnosed peers have “stalled out” or developed concomitant issues such as epilepsy or ADHD. Some communicate only in rote fashion, or hardly at all, and they will never, to use the phrase prominent in all our hope chests, “live independently.” One of them, two-plus years older, still can’t read. One can’t speak, or walk without hopping. Still another has a full-ride scholarship and completed an astrophysics internship at NASA Ames.

Tests or no tests, diagnosis is not prognosis.

There’s something, though, the testers never tried to measure. My son is an exquisitely happy person — marinated in joy, I call him — but it wasn’t an accident. When he was in seventh grade, on a specific day in March, he made a decision. Stress and worry subtract years from one’s life, he had read, so he concluded, that hour of that day, with baseline logic, that negativity was counterproductive.

He decided he would never be negative.

And he never is.

He’s not goofy-stupid-annoying happy, but he doesn’t get nervous before competitions, he doesn’t mope if things don’t work out, he doesn’t brood or fret. When he came in second in the American Math Competition, having twice finished first, I asked he if he was “bummed.” He paused for a bit, then said in puzzlement, “I don’t get bummed.”

His mother isn’t quite the same, and at times I want to plead, “Teach me, Yoda!”

I expected and conjured many things during the first terrifying and difficult years of his life, but this equanimity and indefatigable cheer is the last thing I would have expected. It is a shower of emeralds every day.

As pediatricians start running babies through their survey (which is a bit like puppy temperament testing; but again, I don’t disapprove), the tykes will gradually teach us. Autism has many many colors — it can seem like a sensory processing disorder, a communication disorder, an anxiety disorder, a veritable cornucopia of fluctuating and overlapping conditions. Frantic parents, slammed with the thunderbolt “A” word, grab onto anything anecdotal, trading stories of failure and triumph, setting up not-at-all-clinical trials in their own homes, but each family is really navigating in isolation. All children have their own schematics.

The most important thing I would want parents to know is this: Try to view these children from the inside out, not the outside in. Spend less time wondering why they’re not doing what other children do, and pay attention to why they’re doing what they are. Because I promise you, there is a reason for everything an autistic child does. There. is. a. reason.

Exhausting and scary as it is, you have to be student as well as teacher. Watch, listen, wait; and above all: Embrace the unexpected. •

Posted by: The Editors
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