My Son with Asperger’s: Why I couldn’t admit he was on the spectrum

Image Source: Thinkstock
Image Source: Thinkstock

We weren’t in denial. Not exactly, but we took our time coming around. We knew it was unusual for not-quite-three-year-olds to know so much about astronomy, to possess such an advanced vocabulary, to spend hours at a stretch spinning the lids of Tupperware containers. We thought this demonstrated the seeds of genius. And we weren’t wrong; the boy is extremely bright.

What we didn’t know, or didn’t want to know, is that these behaviors — the business with the Tupperware lids in particular — are red flags, signs that something may be (to use a fancy industry term) wrong.

Our son’s preschool teacher gave us the grim news. (She is kind and gentle and Danish, so the news was delivered kindly, gently, and with a Danish accent). We should have him evaluated, she told us. He might have a delay. But the A-word was never used. It was replaced by the more benign-sounding sensory issues.

We liked the idea of sensory issues. Sensory issues are not listed in the DSM-IV. Sensory issues would not indelibly mark our son’s academic record. Sensory issues could be grown out of.

We had a meeting with our school district’s Social Services department. Huddled around the conference table were the district psychologist, a representative from the county, a parent advocate, the specialist who tested him for pragmatic speech, two teachers from his preschool, and us — all here for a single child who weighed less than forty pounds.

In the middle of the table was a box of tissues.

“He definitely needs services,” the psychologist, a red-faced man with round glasses and a penchant for mumbling in jargon, decided. “We just don’t know what. Does he need speech? Does he need OT? Does he need a SEIT? We don’t know.”

It was explained to us that, while our son spoke with a well-above-average vocabulary, it was his pragmatic use of the language that was the concern. It was explained to us that OT stood for occupational therapy, which he needed to help him with motor skills gross and fine. It was explained to us that SEIT was shorthand for special education itinerant teacher. It was recommended to us that our son be evaluated by a diagnostic pediatrician.

Again, no one used the A-word. No one corrected my wife when she said: “He has sensory issues. That’s all it is. I’m sure it’s just sensory issues.” But I could detect that the others at the table were keeping something from us. There was an elephant in the room, and its name began with an A.

The diagnostic pediatrician didn’t look like a doctor. If not for the stethoscope around her neck, I’d have taken her for a poetess. Our son spent almost two hours with her. He did puzzles and answered her questions, some eagerly, some dismissively. He played with a toy farmhouse.

Then the diagnostic pediatrician dropped the A-bomb. Actually, she dropped two; in her formal evaluation, she diagnosed him as “high-functioning autistic.” Then she deployed the second: what our son had, she said, is Asperger’s syndrome.

That night, we cried. We didn’t cry because he had what he had — what he had was an integral part of his personality, a personality we adored — we cried because we were worried about him. We cried because we were afraid that he’d grow up with a stigma attached to him. We cried because we didn’t want to spend the next fifteen years going to meetings with that psychologist. We cried because we loved him.

The next day, I looked up Asperger’s syndrome on Wikipedia. Although our son showed flashes of some of the behaviors associated with the disorder — the social skills delays, the advanced speech, even the interest in stars and planets — he did not exhibit the biggie: obsessive interests in arcane subjects.

“He doesn’t have it,” my wife said. “He can’t have it. He has a good sense of humor! He laughs! And he loves to cuddle. He’s a big mush!”

The doctor’s wrong, I decided. She’s wrong, and my wife is right; it’s sensory issues; that’s all.

I closed the Asperger’s page. It would be more than a year before I went back to it.

A good friend of mine has a son almost the exact same age as ours. Her son, too, had problems in his preschool. He, too, was diagnosed as “high-functioning autistic.” Overnight, my friend became an advocate for autism awareness. She went to meetings, she trained to be a parent advocate, she organized support groups, she even launched a website devoted to parents of kids on the spectrum.

I did not react this way. On the contrary, I avoided the subject completely. It’s not that I was ashamed. I love my son, and I think he’s brilliant and creative and cool as all get out. I just wasn’t ready to deal with it.

I didn’t want Asperger’s to dominate my life. I didn’t want one of those puzzle ribbon stickers on my car. I certainly didn’t want to talk about “the spectrum” with anyone; the last thing I wanted to spend my free time doing, after parenting a boy with Asperger’s all day, was talk about Asperger’s.

I was curious, of course. I wanted to know what we were dealing with. But the subject filled me with such dread that I simply could not bring myself to investigate it. I let it sit there unopened, in the same way I do with my credit card bill. Then one day, a good year and a half after the visit to the diagnostic pediatrician, I decided to tear open the metaphorical credit card envelope and take a cold, hard look at the fine print.

At the time of his evaluation, our son did not yet have arcane interests. Now, he did. He was obsessed with states, with real estate listings, with Interstate highways, with pylons, with lamps (especially chandeliers), with floor plans. He talked about these areas of interest incessantly; sometimes it would be pylons, sometimes states, but it was always something that demanded his undivided attention.

And I admitted, begrudgingly, that the doctor had been right.

I dealt with the diagnosis in the only way I knew how: I wrote about it.

Writing required a great deal of research that was emotionally difficult for me. There were many moments when I had to take long walks around the SUNY New Paltz library to process all the data, but I needed to learn as much as I could about autistic spectrum disorder, to make the novel I was working on as informed as possible. This was vital; I wanted other parents to be able to profit from our experience.

Although the research process could be unpleasant, a lot of what I learned was comforting. For example: Asperger’s has only been on the books since the mid-’90s — the blink of an eye in terms of scientific development but long enough that my son will benefit from two decades of academic study. The spike in autism rates in the last ten years, while alarming, guarantees that our son won’t be alone in his struggles and that his teachers will be well-acquainted with spectrum disorders long before he makes it to their classrooms. Most of all, organizations like Aspies For Freedom, led by people like my friend, have established a support system that was unheard of just a generation ago.

One day my son will realize that he has Asperger’s. I worry about that day, but I’ve stopped worrying about other things. The two years of specialized early education have done wonders for him. He’s adjusting well to kindergarten, charming his teachers, making friends. He was even elected president of his class — an honor that, in true Asperger’s fashion, he found annoying. (“It’s so boring,” he whined). He has his off days, of course, as all aspies (and all six-year-olds) will. But we’re beyond proud of him – and more than a little relieved.

As for me, I still don’t like to talk about the spectrum. I’m still not entirely comfortable with the A-words. I don’t attend support groups, I don’t scour the message boards on autism-related websites, and I’ll never put that puzzle ribbon sticker on my car. But every day I’m amazed by something my son says, does, or observes, and I feel blessed to be the father of such an original thinker, and such a sweet kid.

Article Posted 8 years Ago

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