Sep 06, 2011 0 Share

Joining the Club

Membership application with pen.

Though my parenting experience is not unique, I have often found myself feeling alone and in uncharted territory. I have a 16-year-old son with Autistic Spectrum Disorder. This specific diagnosis wasn't determined until three months before his 16th birthday. Prior to that, he just floated from kind of being a little of this, to kind of being a little of that. He was first diagnosed with a learning disability at the age of three, but this "diagnosis" contained the term "Not Otherwise Specified." I was left asking, “Well, why can’t you be more specific?”  I was often at a loss to find a socially acceptable way of describing my son. At times, it seemed that making a giant sandwich board to hang around my neck explaining his challenges would be a good way to go. Strangers would be so involved in reading the list of cognitive dysfunctions and sensory integration issues that they might not notice the meltdown in the produce section. But here’s the thing: When he was given this diagnosis, it did not unlock the gate to a world filled with people just like my son, and I wasn’t handed a roadmap leading me to his fullest potential. I felt I had become an official member of a club, but the clubhouse felt a little empty.

Back when I was presented with my toddler’s “non-specific” diagnosis, my reaction was, “This can't be an accurate reflection of my son!” So I asked a child psychotherapist to provide feedback on the results provided by the public school system. (My assumption was that any testing done for free couldn’t be good testing, so I set out to support my assumption.)  The psychotherapist sat with my ex-husband and me, hardly glancing at my child lining up plastic animals on her bookshelves, and proceeded to tell us that he did not need the Special Ed Pre K recommended by the testing team. No, what our son really needed was for my ex and me to enhance our parenting skills. I should carry a basket around at the end of every day and pick up toys so I won't feel overwhelmed by clutter. Alrighty then. If it had been my mother offering this advice, I would’ve hung up on her. Instead, I wrote this woman a check. I often wonder how much money hopeful parents waste on “professional” advice just in an effort to find an answer they can live with.

Since less clutter at the end of the day wasn’t having an effect on my son’s prognosis, it was time to consider treatment options. I went from the “There’s nothing wrong with him” to “Oh, he'll grow out of it." When my son was six, I remarried and we moved abroad. A mainstream setting was all that was available in English, and I was convinced that the previous two years in a Special Ed setting had “fixed him.” I was sure that he would catch up to his peers any minute now. Mind you, I had no test scores supporting my conviction but denial can be habit-forming. When we looked for schools abroad, one school accepted him without hesitation, so I felt this justified my belief that he was ready for a mainstream classroom. With the aid of my hindsight goggles, I now realize that acceptance was based not on my son’s ability to handle the curriculum and classroom setting, but rather on our ability to pay tuition.

As I look back on how my outlook has changed over the years, I wonder if having a more concrete diagnosis sooner would have made a difference. My son is who he is because of what he’s experienced so far in life. He is a great young man, and I'm proud to be his mother. I am a better person because of him. The timing of his diagnosis wouldn’t change that.