Vignettes from Just This Side of Normal: Glimpses Into Life with Autism

"When I grow up I want to be a screwdriver!" My six-year-old is spinning outside his school in front of the teacher's lounge, where through the windows I can see the staff drinking sodas and looking at us through the corners of their eyes. His eyes are closed as he spins.

I've been called to the school (yet again) to help my son regain his composure, and although I'm about to lose mine, his choice of future employment fascinates me.

"Why a screwdriver?" I ask him.

"Because they go round and round, Mom, like a whirlpool, like a tornado, like this." He starts to spin. He loves to spin. I watch him spin down the sidewalk.

Why does he spin? Somehow I think it boils down to the reason most humans do anything. Ultimately, it makes him feel good.

Of course, the earth is spinning as I write this, so, in a sense, every moment that we live and breathe we do so spinning. When water goes down the drain, it spins. In fact, spinning occurs regularly in nature. Yet spinning is not something most of us do frequently-unless we like to get dizzy and fall down, or are a Whirling Dervish and connect with God this way, or perhaps have autism. My son falls in the latter category. At any rate, it comforts me to know that the world is spinning at this very moment. I'm always looking for tie-ins to the greater reality.

I have a memory. I was twelve years old and watched a TV special on autism. I saw a little boy rocking in a corner and another little boy spinning plates, each oblivious to the world around him. After watching that show I picked up my cat, walked outside, and cuddled him to me. I was shocked to learn that there were children like that. I looked up at the trees and then to the sky, thinking to myself, "Autism must be the hardest thing a parent could face."

Now, having lived with autism for twelve years, in many ways I still believe this to be true. However, I have learned that autism is not always as obvious as a child rocking or spinning plates in a world of his or her own. Autism can present itself in a variety of ways: inconsolable tantrums, a preference to play alone, eyes that look through you. . . .

Autism is a profound, engulfing disability that affects brain function. It impairs a person's sensory processing system, affecting their ability to communicate and to relate to the world the way the majority of us do. Autism is often accompanied by other disorders, such as developmental delay and epilepsy. There is no test for it. One watches with growing apprehension as one's child develops differently from other children. Or one watches their precious child lose whatever language and social skills had previously been gained. At this writing, the cause is still unclear, a cure still a wish.

Parents of children with autism today face a myriad of treatment choices, none of which guarantees improvement. Intensive behavioral and educational intervention, vitamin therapy, diet modifications, and medications are among the many, many possible options. Each individual with autism is so unique that what alleviates symptoms in one person might well do nothing for another. Experimental treatments appear regularly. I was so confused by the many choices I discovered while trying to help my son, Nicky, I was compelled to write my first book, Autism Treatment Guide.

As a young mother, I was not prepared to have a child with a disability. Most of us dread the thought of seeing our own child suffer. We also fear that we would be unable to cope and that our personal dreams would be shattered.

Society views disability as a "tragedy." In fact, the greater tragedy is society's larger and erroneous view that there is such a state as "normal." This view, in itself, sometimes feels like a greater burden than the disability.

"Normal" does exist, but you have to look for it. It is a place that is somewhere between the middle of two extremes. For instance, there are shampoos for oily, normal, or dry hair. Another good example of normal can be found on my clothes dryer, between "fluff" and "shrink it." This area is marked "normal." I use this setting frequently because it is the closest to normal my life usually gets.

The truth is, "normal" is not a word that should apply to the human condition. People are different, and they constantly change. A close approximation to "normal" might be "balanced." For example, the body will work overtime to fight an infection and return to a healthful state. Balance is a state of being we often strive for-a sort of happy comfortableness. And some of us endeavor to maintain a balanced state within ourselves, our families, and our communities. We have to discover what this means for ourselves, and this too changes over time.

Mothering a child who is "different" has given me an opportunity to think a lot about all this. It has been a process that has caused me to look within and has frequently challenged me to change my beliefs.

I used to think there was such a thing as a "normal, happy family" and that it was something attainable. I hadn't experienced that as a child, so I set out to create it as an adult. Autism bombed that notion. Just as well. I'm not pretending that autism, in its varying degrees of severity, isn't painful in many ways for everyone involved. It is. I'm simply saying that some of that pain is relieved with understanding and acceptance. Having a child with a disability has shown me how precious life really is and that being human means learning to love. The simplicity and complexity of this understanding never cease to amaze me.

The vignettes that follow are glimpses into the twelve years that I have shared so far with my son. This book does not presume to describe all there is about living with autism or any other disability. It is offered as an expression of gratitude for my life despite it all.

Living minute to minute, hour to hour, day after day, is the human condition, and it is rarely glamorous. But we are all granted moments when clarity shines through, moments of grace. They are cool drinks of well water that sustain us. They are sweeter when shared.


Nicky at Seven and a Half

I stand in front of the bright green door, waiting to pick Nicky up from class. As we walk to our car I spot another small boy ahead of us. "Look," I say to Nicky, "that boy is wearing a sweater like yours!" I am trying to engage Nicky's interest-he likes sharks, which are the theme of the sweaters. It does interest him, and he looks down at his sweater and says, directly quoting from Reptiles of the Amazon, "You know, Mom, sharks do not have bones, only cartilage."

"Very good," I say, "but what is that boy's name?" I am curious to know if my child is learning the names of his classmates after three months of school. One of our goals for him is to become more socially aware.

"I don't know," he replies.

We get in the car. "Come on," I badger, "you know his name, I know you do, tell me what it is."

"I don't know."

"Think, Nicky, come on, you can do it." For some reason, I'm determined that he try. This pushing goes on for at least two minutes. I see his small hand grip the door handle tightly. His eyes close, and with the greatest effort and concentration he begins:

"Good afternoon, class. Good afternoon, Haley, good afternoon, John, good afternoon, Brittany, good afternoon, Cory, good afternoon, Aleisha, good afternoon, Mark, good afternoon Ray, good afternoon Garrett. That's it, good afternoon, Garrett."

Stunned, I thank him for telling me his classmate's name (which I assume is just Garrett and not Good Afternoon Garrett). For the first time I understand how his brain works differently from mine. I truly "get" it. His is a brain of cul de sacs and one-way streets. There are no shortcuts. As I drive home I wonder what it would be like to be able to travel only down one-way streets. It would take us hours to get home, and it would be a miracle if we arrived at all.

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