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A Different Kind of Happy Ending
by Cammie McGovern

When our oldest son, Ethan, was diagnosed with PDD-NOS by a neurologist with a few missing social skills himself, I knew enough to glean the crux of what he was saying:   “You mean autism, right?”   I said, staring a the three-year old boy I'd spent the whole morning prepping for this visit:   making sure he was well-rested, well-fed, boned up on his limited vocabulary to escape this exact, life-ending diagnosis.

“That's it!” the doctor said excitedly. “PDD means he hasn't got every trait of classic autism, but it's still very serious.   Basically you'll hope he can one day write a check, hold a simple job, things like this.”

I focused all my concentration on not crying in front of this man.   I asked if there were any books he could recommend.

He thought for awhile, as if this were a question he'd never been asked before:   Finally he said, “ Rain Man is a good movie.   Have you ever seen that one?”

We began to get mileage on the dumb Rain Man comment right away. What a stupid doctor, was the subtext to all our stories, told a little frenetically, with a strain in our voices, because I'd started to find some books, and do some research late at night.  

In truth Ethan had never seemed like a typical baby.   He was colicky and allergic, beset from the start by skin rashes and a chronic runny nose.   He was also late to all the milestones that first-time parents hover anxiously waiting for.   He smiled at nine weeks, crawled at nine months, walked at sixteen. “The late end of normal,” our smiling, bow-tied pediatrician always said. But as time went on, the list grew; he had words by two years, but he wasn't combining them, wasn't communicating in the way we saw other children doing.   He didn't point, didn't wave bye-bye, blinked stupefied at a cluster of adults doing a wave of “So Big!” around him. Worst of all was the way he seemed to play happiest in isolation, dribbling sand between his fingers.   The more I read, unfortunately, the clearer it became to me:   This doctor might have been stupid, but he wasn't wrong.

The incidence of autism has exploded over the last ten years and it's now estimated 1 in 166 children will be diagnosed, an increase of over 300 percent since 1990. ( ED:   I need to check the second half of this stat.   Everything else in here has been checked. )   The explanation for this rise is being hotly debated, especially around the question of thimerisol, a mercury-containing preservative in vaccines at the time (thimerisol has since been removed from most, but not all, vaccines given in this country.)   For us, finding an explanation felt less important than researching the daunting array of therapies available, all bearing the same urgent caveat:   the earlier you start, the better the outcome; the younger the brain, the more malleable it is; the more you do now, the further your child will go later in life.   No parent of a child diagnosed on the autistic spectrum can afford to ignore those words or a take a “wait and see” attitude for very long.  

Some doctors estimate that between 40-50 percent of the children being diagnosed on the spectrum have accompanying gastrointestinal issues that spring from an inability to digest the common proteins found in wheat and dairy.     For these children, an aggravated and permeable intestine allows these proteins to travel in the bloodstream to brain where they have an opiate effect.   Though no extensive scientific studies have been done to support this theory, the anecdotal evidence is so strong now that most parents at least try a gluten and casein free diet to see if it will help. For Ethan, who had spent his life with intractable diarrhea and got a “failure-to-thrive” diagnosis when he was four years old, diet changes have made a tremendous difference in his ability to digest and absorb food, grow properly, and function better.  

Other therapies we've tried have been just as important.   In the beginning, with a three-year-old who had very little language and fewer play skills, we started with a modified form of ABA (applied behavioral analysis), a one-on-one therapy where vocabulary, games, and compliance are taught by a therapist trained in breaking down all components of learning   into rudimentary steps.   Words are taught receptively, in a simple format without distractions.   Three pictures are laid out.   “Point to truck,” the therapist will say.   Later, the words will get more abstract. “Point to big,” or “Point to long,” and eventually the child will have to say them himself.   To some parents this approach feels counterintuitive.   How will sitting at a table, working with an adult, help a child learn play skills or to relate to other children?   In the end there are arguments for and against every therapy we tried and the answer is always that every child is different;   you try what you can and see what works. For Ethan, starting with the highly structured format was a crucial step in readying his brain to organize itself; he finally began to learn   how to learn .

Eventually his therapy times became looser, more like play sessions incorporating his greatest passions, for music, instruments, and machines.   In the frantic pursuit of checking off tasks mastered, we didn't want to lose sight of the ultimate goal, to have a child who could play with other children, who could tell us what he needed, and had a wider range of interests than dribbling sand. Over time, we tried many different therapies, some floor-time play, some sensory integration, auditory integration, neurofeedback and music therapy.   The happy news is that these therapies are effective and autism has a much different face today and is far less often a life-sentence of withdrawal and self-injury that it was in the past.  

Here's the other side of the story, though:   we've spent almost seven years waging this war and we haven't—in all honesty—won it. We do not have a boy anyone would point to as a miraculous example of recovery or even of particularly high-functioning autism. When you start on this journey, you read stories of children who have recovered enough to waltz into first grade with no vestige of their autism remaining and you dream of one day telling such a story yourself.   Is it sad to admit this hasn't been the case?    In truth, less and less so.

Every family I've known waging this war comes to the point where they begin laying down their arms because sooner or later the battle against the disorder begins to feel like a battle against the child.   When your child has enough language to tell you that he likes dribbling wood chips because it makes him feel calmer, that it's a way for him to sing inside his head, you think, “Huh. Okay.   Fair enough.”   When he laughs at a particular intersection every time you go through it with the only explanation, “I don't know, I just love that traffic light,” you think, “Well, there's worse things to love.”   He is who he is, and autism is part of it.  

You also begin to see the way autism is a cloud with its own silver lining.   Ethan's passions and his room-pacing joy at the prospect of a concert, of Halloween, of a vacation in a hotel that has a pool, are so all-encompassing it's impossible for everyone around him not to be infected by it.   I know families who build day trips and vacations around train rides and planetarium visits, who decorate their walls with the portraits of fifty US presidents or posters of the Beatles.   They do this because they have a child whose interests are so precise and so all-consuming that their parents—in the process of laboriously teaching them every skill they will need to function in the world—have learned something, too, about the simple pleasure and delight of arbitrary passions.

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