3: The Diagnosis

3: The Diagnosis

From Chicken Soup for the Soul: Raising Kids on the Spectrum

The Diagnosis

Turn your face to the sun and the shadows fall behind you.

~Maori Proverb

In the child psychiatrist’s office, I introduced my eleven-year-old son. “This is a wonderful boy,” I said to the doctor, who looked no more than twenty, but had diplomas from Stanford and the University of California on the wall behind him. I wondered whether he knew what he was doing. I was aware we were about to spend the good part of an hour talking about Ben’s behavior problems in front of Ben and that there wouldn’t be time for listing all of his joyful qualities. “He’s smart; he’s a whiz at math; he’s good at sharing.” I smiled at Ben. “Well, most of the time.”

Ben was picking at his nails and looked stricken, as if he was about to be carted off to jail.

“And he’s honest,” I said, laughing.

Dr. A’s smile looked forced. “I’m sure he is a wonderful boy,” he said. He was building rapport with us; I’d learned how to do that in my psychology-training program, too. “So why have you come to see me?”

My partner and I described the most recent meltdown, which ended with a broken toe for me, and then Dr. A guided us in a lengthy history taking. I recognized many of the questions designed to ferret out a diagnosis.

Were there any repetitive motions, any hand-flapping? No. He didn’t have those signs of autism.

Did he line up objects, count things excessively? No. It’s not OCD.

Inability to focus? Lots of excess energy? No. It’s not ADHD.

Limited interests? Lack of friends? No, he has a handful of friends, the brainy boys from elementary school. He’s a little obsessed with the Giants, but aren’t lots of boys? I’m not sure what we’re ruling out here.

Lack of empathy? No, he hugs me when I cry.

Difficulties learning? No, he’s a whiz at math, we say again. And he likes to read. He doesn’t have a learning disability.

Dr. A listened to our descriptions of Ben’s development, his getting “stuck” on ideas and questions, his need for black-and-white answers to questions, his extreme frustration when he hears “maybe” and “I don’t know,” his raging when his routine changes. The melt-downs. How his best friend had stopped calling this year.

Finally, the doctor had heard enough, and he sent Ben to the waiting room. “Let me get right to it,” he said. “First of all,” he directed to me, “you are a psychologist, right?”

“Yes.”

“Ph.D.?”

“Yes.” I shot a look at Pam. “Pam is his other mother,” I said.

“I taught special education for thirty-three years,” she said.

He glanced at Pam and then spoke to me again. “What do you think it is?”

I shrugged. “I think it’s sensory integration dysfunction with a lot of emotional overlay.” But for the first time I was no longer sure.

“Let me tell you what I think it is,” he said. “I think your son has Asperger syndrome.”

It had never occurred to me that my son might be showing signs of Asperger’s, and I immediately felt ashamed. I should have known. What kind of psychologist was I, if I didn’t keep up with all the syndromes, if I couldn’t even figure out what was going on with my own son? What kind of mother?

I rubbed the hard plastic arm of the chair. “I never thought of that.”

“I see at least one autistic child or adolescent every day. Sometimes two or three.” He was smiling again, as if proud of his experience, his diagnostic acumen.

But I didn’t understand why he was telling us about autistic patients. What did autism have to do with Ben?

Autistic meant the kids I’d worked with back in the eighties, the kids who flapped their hands and echoed what I said to them. Even while I was thinking this, I knew I was wrong. I’d read about the autism spectrum; I knew there were milder forms. I knew that the number of people diagnosed with Asperger’s had been rising. The rest of the appointment began to blur. My son was on the autism spectrum. He was barely on the autism spectrum, I needed to believe. AUTISTIC sounded too serious, like CANCER. Way too scary.

•••

On the drive home from Dr. A’s office, the three of us were quiet. I’d known only a couple of children diagnosed with Asperger’s, like the third grader the previous year who at recess walked on tiptoes around the perimeter of the school yard, running his fingers over the chain link fence. The children I remembered from the playground were much more impaired than Ben. I wondered if Dr. A was wrong.

After we dropped Ben back at school, I e-mailed two friends about the diagnosis, using the words “weird, in shock, disturbing, freaking out.” It was easier to write it than say it. I wanted both the instant connection of e-mail and the safety of hiding behind it. If I’d picked up the phone or told someone in person, I wouldn’t have been able to get the words out past my sobs.

I didn’t tell my mother, to whom I had just given a book on sensory integration disorder. I could have said, yes I’ll pick you up from the airport, and let’s go to the symphony this month, and, by the way, your grandson has Asperger’s.

I couldn’t tell people yet. I was ashamed, scared. I didn’t know what to say.

Before the kids got home from school, I raced to the bookstore and pulled books about Asperger’s off the shelves. I read half of one sitting on the cement floor, and within two minutes I knew that Dr. A was right.

Extreme reactions (e.g., tantrums) to minor upsets.

Difficulty being flexible, changing plans. Gets stuck on topics.

Upset by ambiguous language. Interprets language literally.

Concrete and literal thinker. Prefers things to be black and white.

Difficulty making and keeping friends.

Poor coordination.

I stuck Post-its on the pages I wanted to copy for his sixth grade teachers. Staying busy kept me from weeping.

The next morning, before work, I found the website of a woman whose father, brother, and two sons had Asperger’s. She had made a long list of the positive qualities of “Aspies.” I was blown away by her enthusiasm, her cheerleading for Asperger’s, but I was not in the cheerleading frame of mind. Mostly, I still wanted to play on the team that would trounce the Asperger’s. At that point, I thought of it as a disease, one that could be cured.

As I read more about Asperger’s, I understood it was not going to go away. From the books I’d skimmed in the store, I knew we’d have to learn new ways to deal with him, and he’d have to be taught directly the skills he’d need to make and keep friends, to understand body language and idioms and sarcasm. But he would always have Asperger’s, and we would always be teaching him. Little did I know how much he would teach us too.

~Katherine Briccetti

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