A look back to the unsettling days of diagnosis

This week’s post is an excerpt from A Regular Guy: Growing Up With Autism.

Matthew was always in the same spot when I came to pick him up from preschool, shoving pieces of tan bark from the play area through the chicken-wire gate at the school entrance. No matter what the weather, his handsome face and blond bangs peeked out from his blue corduroy hooded jacket, and his rosy mouth curved in a slight smile. He was always alone.

matthew post

“Someone has been looking for you,” his teacher,Gretchen would say, and while Matthew looked happy to see me, it was only because I arrived on time. If I had arrived even five minutes earlier, he would have flipped out and forced me to wait by the gate while he did his bark-shoving. This was just one of the many rituals Matthew insisted on during his day, and he was collecting more all the time.

The group of mothers whom I met at  preschool were kind to me and to Matthew, and they had included us in a few group playdates. I loved the idea of being included, but the differences between Matthew and the other children his age were amplified when we gathered. I chased Matthew around cheerfully and tried to draw him into the group, but ended up apologizing for his quirks.

“Oops, Matthew, the cookie doesn’t go in the heater vent!”

“That’s right, Matthew, light! He’s fascinated with lights.”

“I’m sorry. . . ”

In the end, I felt like the manic cheerleader who kept missing her flips.

While I felt relieved that a child psychologist that we had consulted with had said “he is not autistic, just delayed” I was haunted by a leaflet I had picked up in her office, one that listed autistic symptoms. It seemed that so many of the items on the list were sprouting in Matthew every day. Those that worried me the most were the ones that had nothing to do with speech and language.

“Insistence on sameness; resists changes in routine.”

I have to go around the block before pulling in the driveway or he’ll flip out.

“Difficulty mixing with others.”

Difficult? He just won’t do it.

“Sustained odd play.”

The wheels, the drains, lining up toys, licking everything.

I watched the children who were receiving speech therapy getting better, and I resented Matthew because his gains were so much less impressive.

“Wow, Nickie is doing so well,” I commented to his mother in the speech waiting room.

“He’s made great strides,” she replied proudly. “His developmental pediatrician said that he’s never seen such a huge improvement in such a short time.”

“You’re going to a developmental pediatrician? No one told me to see a developmental pediatrician. Who do you go to? What’s their number? What else are you doing? Hold on, let me write this down,” I said, digging frantically in my purse.

“You’re doing vision therapy, too, aren’t you?” she asked. “And you’ve got to get all the wheat and dairy out of his diet.”

I wrote it all down on the back of a grocery receipt.

“How did you hear about all of this stuff?” I asked, feeling like I’d missed out on membership at an exclusive club.

“From other parents, mostly,” she said. “But if I were you, I’d get on the developmental pediatrician’s list right away. Matthew’s autistic, right?”

She threw it out just like that. I felt the blood rush to my face and my heart raced dangerously.

“I don’t, we don’t know yet,” I managed. I wanted to hide, to disappear.

“I just assumed,” said the mother. “Gosh, I’m sorry. I’m sure he’ll be fine.”

Again, I spied at Matthew from the rearview window as we drove home, and I wondered. When was the last time I looked at him and smiled proudly? When was the last time I didn’t suspect that there was anything wrong?

I needed to remember. I needed to get that feeling back, or I would go crazy.


Laura Shumaker is the author of A REGULAR GUY: GROWING UP WITH AUTISM


She writes each Friday for 5 MINUTES FOR SPECIAL NEEDS.

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