A Mothers' Story of Autism

Alex is, as most children with Autism are, a firstborn son. He was born early, at twenty-eight weeks, with all of the ills of a premature baby plus a deformity in his right leg. He stayed in the Neonatal Intensive Care Unit for nine weeks following his birth and used supplemental oxygen until he was eight months old.

When the tubes were removed my husband and I allowed relief to flood us- our son had displayed no lasting effects from his premature birth beyond his small size. He smiled at us, played like babies do and had begun, although delayed, to roll over and sit up.

Onset

After his first birthday, we began to notice a change in Alex. He was serious and rarely smiled. The twinkle of light in his eyes was gone. I do not say this simply for the sake of drama. Going through the hundreds of pictures of Alex at this age, you can see the usual jovial glisten go flat. He had not begun to develop any speech and he had no interest in other children. By two years, he was missing his developmental milestones. By this time, he was receiving therapy at home from a physical therapist and an occupational therapist. Soon after, we added a speech therapist. She would prove to be our only ally.

In addition to numerous therapies during the week, Alex attended a morning preschool at the local early intervention center. We felt this would help our “shy, quiet” child become more social.

No Tangible Progress

By age two and a half, Alex still had no speech, and his solitary, reclusive tendencies had my husband and I in a virtual panic. We had since had another child whose overly-verbal nature threw Alex's lack of speech into sharp contrast. I found myself looking deeply at my son, who would often return my gaze for too long. I began to wonder- Could it be Autism? The thought seemed too terrible after all my little boy had already suffered.

I began to probe the horde of therapists who marched to my door. The speech therapist smiled with relief at my questions, “I am so relieved.” she said, “I was not sure how to bring it up.” She suggested we have Alex tested at the Weisskopf Center in Louisville, KY. The other therapists, including a child behaviorist, vehemently denied that Alex had any problem.

Birthday #3

This section was originally steeped with angry words about the therapists who knowingly turned their backs on the truth. It went into depth about how the early intervention agency in our town systematically stymied our attempts to help our son because of funding issues. (Children with the official Autism diagnosis have stronger, more defined rights and are legally entitled to more services.) Instead, I will suffice it to say that against furious opposition, we received a referral from our pediatrician.

Alex's behavior had become more alarming in the meanwhile. He was climbing anything he could reach with no sense of fear and successfully navigated a maze of security locks between the front door and deck to run half-naked directly into the street in front of our home. My husband and I turned our home into a virtual fortress and watched our son with hawk intensity as we waited for the day of our appointment.

The Test

We called to schedule the test in January of 2004. It took until May for us to secure an appointment. The test was multi-disciplinary. He was seen by a pediatric doctor, a speech therapist and physical therapist, among others. They ordered blood work to rule out disorders like Downs Syndrome and Fragile X.

The diagnosis came like a hammer strike: Autism, high-functioning; moderate to severe. The doctors flooded us with information about support groups and encouraged us to pursue counseling. We called the grandparents and the speech therapist who had become a close family friend. We cried together.

The Aftermath

I looked upon Alex's diagnosis as if part of my son had died. The dreams I had of his graduating college, becoming a doctor- dreams of grandchildren- were dashed. It was possible, we were told, that he may never speak, potty-train, or dress himself.

My husband and I took the news differently and we fought wildly about what it meant for Alex as well as our family as a whole. I was a drowning in grief both for my son and for myself. I resented how Alex's diagnosis would change each of our futures. My husband was more level-headed and optimistic and less shell-shocked by the diagnosis.

We began to think longer-term and in broader views. The intervention system set up to aid had not only betrayed our family but more importantly had failed my son. We enrolled Alex in a private preschool with a small class size to enable him to get more individualized attention. We attended his therapies religiously and devoured all of the cutting edge research we could find. When the school district fought to restrict his access to services based on their budget, we moved. Every night ended with hugs and kisses, regardless of how much Alex struggled to escape them.

As It Lies

Alex is six, now. He still has little intelligible speech, but manages to express himself in other ways. He is in a normal Kindergarten class in a wonderfully supportive school district. He has begun to read and has more emotional depth than most Autistic children. Still, Alex struggles daily with his Autism and, as a family we cope as best as we can. Alex was five years old before he could return my bedtime, "Love you" s. But when that moment finally came it went to my heart as nothing else could. He has grown used to the hugs now and gives them freely- sometimes to complete strangers.

Last year, 1 in 166 children was diagnosed with Autism. This year, the average was 1 in 150. In 2003, it was 1 in 250. This could mean that it was under-diagnosed previously or that it is currently over-diagnosed. Worse still, it could mean that Autism is simply becoming more widespread. At the time Alex was born, the disorder immediately brought to mind the movie “Rain Man.”

My son does not smack himself or beat his head against the wall as some Autistics do, but he does rock occasionally back and forth, hides in his room with his books and simple questions like, “What did you do in school?” are always met with silence and a blank gaze. He cannot often tell the difference between persons who are crying or laughing and finds interacting with classmates to be immensely awkward. Yet, he is beginning to have a grasp of humor and his hugs are strong and without ulterior motive.

I will not lie and say that I do not pray each evening that one day there will be a cure for Autism. I love Alexander without exception or limit, but I want the world for him and Autism limits that world. I want him to know the elation and heartbreak of love without the paralyzing fear he feels around strangers. I want all of life for my little boy.

Autism is a brain disorder that affects children at a very young age. Despite great strides in Autism research, the cause(s) of Autism is not known. There is no cure. For every 1 in 150 locked inside themselves by Autism, I pray a cure is found.