Robert Hughes is author of “Walker Finds a Way: Running Into the Adult World With Autism.”
Recently a momentous, fabulous, electrifying thing happened.
My son, my wife and I got into the car, and she asked him, as she always does, where he would like to go.
“No idea,” he said.
No idea!? Ellen and I sat up in our seats. Our spirits rose like party balloons. No idea! We burst out laughing, and Walker smiled like a stand-up comedian who had just landed a joke.
Walker is not a 1-year-old starting to put words together. He’s a handsome, 30-year-old, 6-foot-3 man with severe autism. He speaks, a little. He converses not at all. He can barely tell people his thoughts. We had only very rarely heard a casual, flip response like this.
Normally our conversations are distilled imitations of conversations. Where do you want to go? “The mall.” What do you want to eat? “Pizza.” What do you want to do? “Zoo train walk” (his code for a long trek through the city). This little remark of his was, as far as we were concerned, Shakespearean. It seemed to reflect the lively, knowing, humorous look he has had in his eyes his whole life.
One of the many odd things about this scene was the reflexive joy that shot through his parents. Ellen and I are 66 and 67, respectively. Walker is well past the age of “development” as the elementary education world sees it. At his age, he is locked into the category of “low-functioning autism.” He is long past the cutting-edge, hopeful world of possible cures celebrated on TV and in the media. He has aged out of not only the education system but also plausible medical solutions to his condition.
Yet we reacted like young parents looking for a break in their toddler’s dire autism diagnosis. In fact, our reaction to small, even infinitesimal, signs of “breakthroughs” has remained the same all his life, despite what could be considered our stunning lack of success. He now lives in a group home, and we pick him up on weekends.
When Walker was born, autism was considered beyond the reach of medical science. In the late 1980s, when he was 3, a pediatric neurologist pronounced, after checking him out for 10 minutes, “I hold out no hope for this child.” He was a judge issuing life without parole. Story over. As Walker grew, however, the experts began to believe that with “early intervention,” a child could escape autism.
But salvation by early intervention implies doom without it. Someone like our son, who did not benefit from the wonderful methods we now know, is presumed by many to be beyond help. Conventional wisdom ruled out his successful growth as a child; today it rules out his growth as an adult.
But Walker himself clearly doesn’t buy this. He’s pursuing growth like a champ.
Ellen and I know this because we’ve seen the video. After his most recent lesson with his lifelong friend and speech teacher Maureen, we watched the session she recorded for us. There they sit at a table chatting about things to eat. Maureen says she likes strawberry yogurt. What does Walker like? He glances at the camera. He pauses. He leans back in his chair, closes his eyes, braces for a mighty effort, and shouts out the words like an Olympic shot putter throwing a heavy weight: “Chips and cheese!” He stays glued to his chair beside Maureen for an hour, never letting up on the intense and strenuous trying.
And at his vocational center, the staff — his good friends — help him deliver Meals on Wheels, help him try to do yoga, try to read books, try to dance, try to play games. Occasionally and strikingly, he does more than try and actually succeeds. He believes in himself because his friends do.
Ellen and I live by the healthy axiom that people our age — in their 60s, 70s, 80s — can grow and change. We see no reason why this isn’t true also for a positive young man who happens to have a terrible but only partially understood disability. There is no reason to set limits on how far he can go with a determined nature and a cohort of friends who believe in him. The secret here is not the goal, anyway; it’s the process. A happy life of friendship and working is all any of us wants at 60 or 70 or 80 — or 30.
Where do we all want to go? I have no idea. But a habit of hope can take us a long way.
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