The Zen of Autism

I was so tired, but the physical exhaustion was nothing compared to the emotional exhaustion. We’d been up since 5:00 a.m., driving down to LA for a three-hour meeting with a specialist at UCLA Neurological Center who had tested my son a few weeks before. My son’s father had insisted on having the doctors at UCLA run the full psycho-educational battery exam in the hopes of finding out what was “wrong” with Trevor.

Truthfully, I was skeptical. This was the third work-up in as many years, the fifth specialist Trev had met with, and every test came with different explanations. We knew he suffered from acute anxiety and had always had issues relating to his peers; he had been preliminarily diagnosed with generalized anxiety disorder, ADD of the Inattentive Sort, mild OCD, and had a differential for schizophrenia (the latter having been dropped after several meetings with the psychiatrist). I hadn’t known what to make of the UCLA work up.

As a parent, the trip through mental-issue land tears at your soul. Watching my son as a little guy suffer through circle time, where he sat alone and apart, was frustrating. My brain would scream as I would hold myself back from intervening, "Why doesn’t he just scoot in?" Worse, watching how the other students treated him like a pariah was infuriating and heart wrenching. My desire to help him while wanting to disembowel the first-grade classmates who teased him left me feeling rancorous and guilty. No matter how many times I explained to Trevor what was expected by his teachers, his peers and at home, it all melted away when he faced the “real world.”

Trevor was now eleven, and I was spent. Every specialist gave us varying answers explaining away his differences: from his teachers, who thought he was emotionally much younger than his peers and really felt he needed even MORE structure at home; to his therapist, who blamed his father’s and my divorce for all his behavioral issues; to my family, who noticed differences but didn’t really see them for what they were.

When the doctor at UCLA wanted to discuss her evaluation, a small, evil part of me internally rolled my eyes and got ready for another guilt trip/misdirection. I was tired of getting my hopes up for the magical cure, having already burned through special diets; to taking on deep-brushing and years of therapy; to medicating him with Ritalin and Paxil; and always the behavioral therapy and special exercises. I was sick of the hope. I was tired of the absolute and ultimately false certainty each specialist’s evaluation embodied.

Worse, I was tired of my frustration and feared that loss of hope would put us in a situation far more dire. I had to hope. There had to be a way for the average person to see how truly brilliant and witty my son was, to understand his talents and creative genius and to see him for his successes. There was nothing in me that wanted to hear a specialist categorize Trevor’s perceived faults. I needed to believe others could someday know what a jewel my boy was and not just continue to describe him as an isolated, slack-jawed loner.

My mind teetered between a delicate balance of opposites. I wanted to know why Trevor was different, but I didn’t. Not really. Not if it was scary. I wanted to beat the kids who teased him and at the same time I wanted to shake Trevor and make him “get it,” make him fit in. He was so funny at home, so comfortable and helpful and easy-going. Why couldn't his peers see that side of him? Why did that part of him hibernate in social situations? I wanted to shout my frustrations from the mountain tops and simultaneously hide in a cavern.

What I got was a long winded explanation from an amazing doctor who saw my son completely. She explained the brilliance of his seeing a very detailed, elaborate scene in the Rorschach ink blot test, to follow up that virtually less than one percent of people don’t see a bat or a bird or a butterfly and that none have ever described what Trevor saw. Ever. At least not in the 25 years she’d been testing people.

Suffice it to say that virtually every card, and every subsequent test, went the same way. He was brilliant. He was funny and quiet and smart and avoidant and utterly different. I was blessed. This I already knew. Trevor was quirky. This I also knew. But that he would always be quirky? Well. THIS was news to me, somehow.

The years have passed and Trevor, who is PDD-NOS, has done a complete 180. No longer on medication, no longer in therapy, that one afternoon’s meeting changed our lives in so many fantastic ways. It turns out I didn’t need a cure on which to hinge my hope of helping Trev. Having a name for what was there was the cure in itself. We were able to get Trevor into social training, which helped him understand the social world and make friends. I was able to study up and read about the differences I saw in Trevor, and know where to look for answers when I needed them. Most of all, the diagnosis opened my eyes to a whole new world and to accept the many shades of gray in our very zen life.

Trevor was fine. In fact, Trevor was more-than fine. It turns out the diagnosis itself was the magic cure I was searching for; but it was actually for me.