I am a proud father of an autistic son. You probably wouldn’t know it to look at him: He’s healthy, has a lovely disposition, talks a mile a minute, and at his six and a half years of age, he will tell you almost everything there is to know about dinosaurs.
Doesn’t sound very “autistic,” does it?
This is my frustration with the term. Long ago, I remember watching a made-for-TV movie about an “autistic” child. The story focused on a seven year old who rocked back and forth, screamed a lot, and had an affinity for watching spinning dinner plates. It was scary to see what “autism” could do to an individual. What was more scary was the end of the movie, which was more about a family coming together in love, but not being able to do anything about the condition of their son, who was fated to live in a world without understanding friendship or accepting the warm embrace of a parent. This is the autism I knew. Very concrete and you knew it when you saw it.
So when my son, at two and a half, was diagnosed by the local school system with “PDD-NOS” (“Pervasive Developmental Disorder-Not Otherwise Specified”) and labeled with “autism,” I was scared out of my mind. My brain raced to his 21st birthday, when I would have to find some institution or half-way home for him in which to live. I wept at the thought of my son not making friends, not knowing romance, not having a family of his own. The word “autism” will do that to a new parent.
And this is the problem. We parents who grew up watching that made-for-TV movie had only one picture of what it means to be autistic. As time has passed over the last twenty years or so, the term “autism” drifted away from a clinical diagnosis with a rigid set of symptoms. Today, the term refers more to the aspects of any brain disorder which changes the windows of the eyes of our children into mirrors, reflecting the light of their world back towards the self. Along the way, the doctors’ P.R. department didn’t let the general public know that’s what they were doing.
I learned this the hard way. The PDD (which really isn’t very descriptive or helpful as a diagnosis) which my son had turned out to be very different than what I had seen on television. Even more encouraging, my son’s condition turned out to be treatable-something that if one’s imagination runs rampant would be difficult to believe. Where there was once one clear-cut way of thinking about autism, there is now a very wide spectrum of disorders which focuses one back upon itself: Aspergers, High-Functioning Autism, PDD… As the umbrella opens wider and wider, more and more individuals are categorized under its expanse. They were always there, those kids, on the spectrum. Now they have a name for the spectrum.
Conversely, since many parents of autistic children have been scared about what autism could mean, based on that frightening image we have in our heads, research and development of therapies and treatments have shed so much light on this once mysterious and elusive diagnosis. My son has been the beneficiary of this great source of healing knowledge. Although we still don’t know the causes, whether genetic, biological, social, or some other external factor, new therapies such as diet, occupational therapy, speech therapy, Applied Behavior Analysis (ABA) and the like, have contributed to a brighter future for so many children. So whether there actually is an epidemic of autism out there or more and more doctors are putting our kids under that wide umbrella, the net effect is that more and more parents are taking action and succeeding in getting their children the help they need and deserve.
Today, my son has been “upgraded” to having Aspergers Syndrome, a very mild form of autism which, in my son, manifests itself by his going into his own little world from which I am constantly pulling him with all the tips and tricks I’ve had to learn along the way. The gluten-free/casein-free diet which his developmental pediatrician recommended, along with strict ABA therapy and a lot of loving friends and family have all helped my son’s mirror fade to a mist. The doctor suggests that in a few years, he may even lose the diagnosis completely.
I am very fortunate. I know many parents whose child is shaded much more darkly under that autism umbrella, and I have great empathy for their experience. The therapies all aid in some slight measure towards bringing each child toward the light. And I have great hope that someday we will make even greater strides in early diagnosis, more effective treatments, identifying causes, and perhaps some day, a true cure. Until then, with more and more doctors labeling our children with autism, we all need to breathe, step back, and be assured that our children do not end with the diagnosis; they grow with our response: in patience, in love, with reason, and with understanding.