April is Autism Awareness Month.
I first became aware of autism about nine years ago when I began to reconcile my meager readings on the subject with the behaviors of my toddler. At that time, autism was not a common word. It was not a frequent daytime talk show topic. In fact, when I graduated from college with a degree in education in 1997, I had heard the term mentioned only once or twice during my studies.
Later that year, we became the parents of a beautiful baby boy with dark hair and thoughtful brown eyes. I read about parenting in books, magazines, and the newly discovered world of the Internet. From time to time, I stumbled across a mention of autism that would cause me to pause for a moment. Eventually I began to pause more frequently and for longer periods of time. Finally, I printed off a list of warning signs for autism and went through them, one by one, to prove to myself that my instincts were wrong.
They were not.
After documenting his repetitive behaviors, sensory issues, social impairments, obsessive interests, lack of eye contact, and echolalic speech, a neurologist diagnosed our little boy with high functioning autism in the winter of his fourth year. We were simultaneously devastated and determined. We were devastated by the loss of our expectations and dreams for our son. We were determined to do everything within our power to ensure that he would have the opportunity to live up to his potential.
In the six years since his diagnosis, we have had headaches, heartaches, and countless victories. We are blessed to live in a community that embraces its children and disregards whatever labels may be attached to them. (At this point, doctors feel that the proper label for our son is Asperger's Syndrome.)
While we initially asked ourselves what we had done wrong or where this disorder had originated, our approach is much different now. We know that autism is a genetic predisposition that is probably triggered by an environmental factor. We know that there is no cure, that blaming someone is futile, and that our focus must be on the future.
We have had slaps in the face during the course of our journey. When I quit my job to stay home with the kids, we discovered that health insurance companies will not insure children with autism, even though there is no medical treatment involved with the disorder.
We have been chastised for immunizing our children by those who believe in the link between immunizations and autism.
We have been told to seek genetic counseling before having more children because we wouldn’t want to risk having another child affected by autism.
People’s interest has grown in the last few years, probably because of the increased attention that autism has received. In the past 10 years, the diagnosed cases of autism have skyrocketed. When the neurologist laid the label on our son and sent us out the door with three sheets of paper that explained the disorder, the estimates were that one in 10,000 children would be diagnosed with autism. That estimate is now one in 150. As a result of those numbers, the amount of literature and media attention has increased exponentially.
My concern about Autism Awareness Month is that the media, which tends to dramatize and focus on negativity, will spread the myths about autism and dash the hopes of those parents who are just beginning their journey with a child on the autism spectrum.
Before today, I have never written about our experiences with autism. I don’t want to exploit our son, and I don’t want to elicit sympathy. However, I realize now that our experience could be valuable for someone who hears the myths or the negativity portrayed on television. In the call for a cure and the rush to blame autism on the medical community or parenting skills, our family – our son – can provide hope for others who are in desperate need for it.
We have had setbacks, but overall, our journey on the autism spectrum has been a story of success. Our son is a fourth grader who hates homework and loves summer vacation. He adores his baby sister, can build a complex electrical circuit, and sings beautiful hymns at church. He has a wry sense of humor and a gentle heart. The past six years with him have been far better than what I imagined as we left the neurologist’s office that winter day.
Our son probably summed it up best when we discussed with him his diagnosis when he was 9.
“You’re not going to try to change me, are you? Because I like how I am.”
A world without people like our son would be flat, uninventive, and stale. While it surely has its challenges, it has also expanded our thinking and made us better parents. We don’t seek a cure or someone to blame. We seek a way to teach him to live within this world, and we seek a world that will accept his contributions.
We have found that world in our small, rural community. I think the world could learn a lot from rural America.
Tuesday, April 1, 2008
April is Autism Awareness Month.