Cherishing Difference

In Expecting Adam, author Martha Beck tells her story of carrying and giving birth to a child with Down Syndrome and what she learned from this experience. The following is a post, inspired by the book. As a member of the online book club From Left to Write, I received a free copy of the book from the publisher. I was not paid to write this piece. You can read other members posts inspired by Expecting Adam here.

If there is one thing I learned from teaching children with autism, it’s that there is no right way to be in this world. A good life is defined in infinite ways. There are many permutations of happiness. I had a sunny little boy who rarely spoke except to say, “Jungle Book,” but he often smiled. I had another student who lived in a cartoon world that merged seamlessly with our own. When I sat him down for a lesson, he would dangle an invisible pendulum in front of my eyes and say, “You are getting sleepier and sleepier. You are now to be scissors!” And I would run after him opening and closing my arms and legs as he giggled with glee. Yet another young man, brilliant beyond his five years, splattered paint onto his easel and said, “Look, Melissa, I’m Jackson Pollock!” (Though if he actually got the paint on his hands he would fall to the floor, burst into tears and exclaim, “I’m going to DIE!”) All three of these children were all blissfully unaware of their disability. They all experienced intense, daily joy unlike most of the “neurotypicals” I knew. They taught me patience, that great satisfaction can be derived from the smallest of accomplishments, and that it did not matter what everyone else thinks.

I don’t mean to paint an overly romantic portrait of what it’s like to be a person with autism. There are children who are self-abusive or aggressive or who experience the world as a series of impingements. And no child is blissful all the time. But I also don’t think of a diagnosis as a death knell. I know that there is a special joy that comes in having a child who lives in our world differently.

Now, as a psychologist, I frequently grapple with the question: what is illness? Who gets to decide? Are people only as sane as society perceives them to be? I once saw a movie about a man with Tourette’s Syndrome. He had corprolalia, the obsessive or uncontrolled use of obscene language that rarely accompanies Tourette’s, and tics so violent, they would take him to his knees. He found it hard to function in mainstream society, but he worked on a farm with horses, animals he adored. The horses were completely unaware of his disorder. They were not offended by his language. They did not judge him. He was deeply happy. He had found his place in the world.

I think the goal—of education, of therapy, of life—is to find this goodness-of-fit. A place where we can be ourselves, without having to conform to a social ideal of a life worth living. As parents, we are both charged with teaching this lesson and helping our children to identify their specialness. It’s a daunting task. How do you help your child to be one way, when there are so many forces demanding that they be another? What do you do if what is special is not something universally valued? How do you avoid the mantle of the impossible ideal of normal?

There is no recipe. It is a fine, intuitive dance of indulging interests without holding onto expectations, of modeling originality with causing embarrassment, being curious about our own judgments and preconceived notions. And, sometimes, just letting things be.