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My autistic son: a story of triumph

One of the great parental rites of passage comes when your eldest child receives that first college acceptance letter. If it's from the school that he or she most wants to attend, then it's a moment of genuine celebration.

But when your child, like my son, Max, is autistic and that first "you're in" letter lands on the doormat — well, I found myself sobbing uncontrollably. Because early on, I'd been told categorically that the hope of Max's ever having a so-called normal life was beyond the realm of possibility.

I was a late arrival to parenthood. When Max showed up, I was a 37-year-old American writer based in London, married to an Irishwoman in the film business. Although there was a moment of panic in the delivery room when a midwife discovered that the umbilical cord was wrapped around his neck, Max hit all his early developmental marks and seemed to be a cheerful, engaged baby with decidedly night-owl tendencies.

But at age 3, his connection to the world began to gradually diminish. Our growing worries were magnified when the head of his kindergarten called us in to observe him sitting alone in a corner of the playroom, staring blankly into the void beyond the window. A briskly clinical educational psychologist diagnosed him with a receptive language disorder, meaning that he had trouble understanding and processing what was said to him.

On her recommendation, Max spent two years at a posh, rather useless school for children with language disorders in London. Not only did he make no progress there, but the headmistress once dismissively told me: "Max's prospects are simply limited. At best he will be happy within himself."

I started frantically researching other educational possibilities. And then, out of nowhere, disaster. Max developed a series of nervous tics and tremors that left him disoriented and confused. A pediatrician diagnosed attention deficit disorder and put him on a course of Ritalin.

Ten days later, while my wife was on a business trip, I walked into Max's room to discover that he wasn't responding to any outside stimuli. When I called his name, he stared back at me with eyes as glassy as a lake in winter.

Lifting him, I saw that he had lost control of his bodily functions. I raced him into the bathroom, washed him down, then headed for the local children's hospital. Halfway there, Max was hit with a convulsion that lasted one long, terrible minute.

In the pediatric neurology ward, my son was hooked up to an electroencephalography (EEG) machine to measure his brain waves, and the needles on the monitor went berserk. The resident neurologist was on the scene moments later, calmly telling me: "Your son is in the throes of a very severe epileptic incident."

He sent us across town to a specialist, who walked in as I was holding Max down during another convulsion. After studying him intently, the doctor gripped my shoulder and said what I was longing to hear: "I think I can get him back."

It took another three months and many pharmacological adjustments for Max to emerge from his walking coma. When he could talk again, the doctor sent him to one of England's top autism experts, who officially diagnosed him as being midrange on the autistic spectrum.

After that, a fellow American in London, the mother of two autistic boys, introduced me to a controversial way of teaching autistic children, pioneered at the University of California at Los Angeles by Norwegian psychologist Ole Ivar Lovaas. Known as either the Lovaas Method or applied behavioral analysis, it's noted for its brutal 40-hour-per-week one-on-one therapy that reportedly reorders the autistic brain.

With a friend's help, I set up a Lovaas school for Max at home. And thus began the process that resulted in his acceptance, 14 years later, at Florida's Ringling College of Art and Design.

It was a frequently arduous journey. In the early months, Max howled his head off as the chief tutor began to chip away at his autism. I had to fight to get him into the one secondary school for autistic children in London, then into one of the few state boarding schools in the United Kingdom for autistic children.

But then it was Max who insisted that he wanted to get the British equivalent of a high school diploma. And who said yes, three years later, when I asked whether he was ready for college. And who, without my help, wrote a remarkable essay entitled 'My Life With Autism," which accompanied all his college applications.

Three years on, Max came to visit me in Manhattan for Thanksgiving. (I am now divorced and living back in the United States.) He grabbed a taxi from the airport, checked himself into the hotel I'd arranged for him, walked alone to my home and accompanied me and his sister to four plays over the weekend.

He had many things to say about A View From the Bridge, which he pronounced brilliant. He asked, "Do you think Eddie Carbone knows he is writing his own destiny? That's the Greek tragedy part of the play, right?"

I thought back to that dismissive headmistress in London who'd told me that Max's future would be limited. And I said to my son, who'd fought so fiercely to overcome his autism: "Writing your own destiny can also be a wondrous thing."

Douglas Kennedy is the author of 12 novels, including the just-published The Blue Hour. He wrote this column for the Washington Post.

My autistic son: a story of triumph 03/09/16 [Last modified: Wednesday, March 9, 2016 7:25pm]
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