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My Recovery from Autism and the Myth of False Hope
 
 
YOU LOVE YOUR child more than anything in the world.
In the early days of your child’s life, long before any diagnosis was made, there may have been a hundred different hopes, dreams, and plans you had for your child. Maybe some were as simple as cuddling with your child or playing peek-a-boo. Perhaps some were as far-reaching as your child’s high school graduation or wedding day.
But then your child was diagnosed with an autism spectrum disorder.
You may have felt that many doors were suddenly closed to the child you love because this diagnosis is often accompanied by a long list of dire predictions.
Your child will never talk.
Your child will never have friends.
Your child will never hold your hand.
Your child will never have a job or get married.
Perhaps even: your child will never love you.
You may have been told to discard many of those hopes and dreams and be “realistic” in the face of your child’s diagnosis. Certainly, there are many, many parents who have heard the pronouncement: “Autism is a lifelong condition.”
No one could fault you for feeling grief-stricken, scared, or even angry. You have just been told all of the things your child will never accomplish—as if it had been decided ahead of time. But before reading any further, it is crucial that you understand this: you don’t have to accept the limits placed upon your child.
Your child has the capacity for learning and communicating, for experiencing real happiness, and developing warm, loving, and satisfying relationships. Your son or daughter can learn to enjoy affection, play a game, and laugh at something silly. He or she can learn to savor the experience of being hugged or held by you. That moment when your child spontaneously looks into your eyes with genuine joy and connection—that is something you can have, not just for a fleeting second but on a sustained basis. Do you ever imagine your child playing Little League, joining you on a bike ride, going on a skiing trip with you, playing with other kids at the park, or doing something in the future such as going to college? These events are possible. Children on the autism spectrum are capable of great change, including recovery.
Who am I to tell you this? I’m someone who’s been there—not where you are, but where your child is.
I used to be autistic.
I know, I know. That one’s a bit hard to digest. You don’t often find “used to be” and “autistic” in the same sentence. This is truly unfortunate, because it points to the intense pessimism and utter hopelessness with which autism is viewed by the people doing the diagnosing. Do you know what my chances of recovery were, according the specialists assessing me?
Zero percent.
That’s right: 0%.
Here’s what happened.
MY STORY
When I was a young boy, my parents (authors and teachers Barry Neil Kaufman and Samahria Lyte Kaufman) saw that I was developing very differently from my two older sisters. I cried incessantly and inconsolably. When I was picked up, I let my arms dangle loosely at my sides.
Before my first birthday, I suffered a severe ear and throat infection, compounded by a violent allergic reaction to the antibiotics prescribed. My life briefly hung in the balance. After a battery of hearing tests, my parents were told that I appeared deaf. As months passed, I seemed increasingly cut off, spiraling ever deeper into my own world.
I stopped responding to my name.
I ceased making eye contact.
I appeared alternately repulsed by and oblivious to the sights and sounds around me.
I appeared deaf to a loud noise right next to me and then mesmerized by an almost inaudible whisper in the next room.
I lost all interest in other people, but I would remain transfixed by inanimate objects, staring at a pen, a mark on the wall, even my own hands, for long periods of time.
I didn’t want to be touched or held.
I spoke not a word (nor did I cry, yell, point, or do anything to communicate my wishes), displaying a total muteness that stood in sharp contrast to my earlier crying marathons.
And then something startling: I became fascinated with the simplest of repetitive activities, spinning plates on their edges for hours on the floor, rocking back and forth, flapping my hands in front of my face.
As my condition worsened, my parents raced from specialist to specialist, trying to find out what was wrong. Tests. Tapping pencils. Shaking heads. More tests. (Keep in mind that, in 1973, the year I was born, autism was much less common than it is now, affecting one out of every five thousand children. The latest study from the Centers for Disease Control and Prevention (CDC) puts the incidence of autism at one out of every fifty children.) Soon I was diagnosed as severely autistic. My parents were informed that my IQ was less than 30.
What can feel like a devastating diagnosis is not really due to the autism diagnosis itself. The devastation comes primarily from the prognosis—all the things parents are told that their child will not do and cannot accomplish.
Like many parents today, my parents were told that the prognosis was certain. I would never speak or communicate in any meaningful way. I would never prefer people over objects. I would never emerge from my solitary world and be “normal.” Moreover, I would never go to college, have a career, or play baseball. I would never fall in love, drive a car, or write a poem. I might, one day, be able to dress myself or eat with utensils, but that was the ceiling of my possibilities.
My parents, seeking solutions, were given only grim pronouncements. They searched for a light at the end of the tunnel and were given only dark predictions. Over and over again, it was drilled into my parents’ heads: autism is a lifelong condition. The specialists explained that, when I got older, my parents would need to look into permanent institutionalization so that I could be properly looked after.
I am still astounded at what my mother and father chose to do in the face of such a damning verdict. They didn’t believe what they were told. They didn’t write me off. Instead, they turned their backs on all the dire prognoses. My parents looked at me and saw possibilities, not deficiencies. Instead of looking at me with fear, they viewed me with wonder.
And so they began an experiment. They began by seeking to create an environment where I felt truly safe. They didn’t push me. They didn’t try to change my behaviors. They sought first to understand me. Think about this for a moment. How often do we really do this—with anyone? People behave in ways we don’t understand all the time. For most of us, our knee-jerk response is to try to get that person to change—whether that person is our partner, our friend, a store clerk, an employee, our parent, or, indeed, our child. When do we ever begin our response by truly seeking to understand without pushing, to provide the other person with an experience of safety and caring without trying to get him or her to change? How amazing that my parents began from this most kind and useful place.
Having heard thousands of parents tell me about their...