At the Margins

When Dr. Jean Smith called me in the summer of 2017, I was in the basement of the old house, building Ryan a bed.

Mommy and I had recently agreed to refer Ryan to the County Intermediate Unit after he’d been flagged by his preschool teachers for various instances of biting, hitting, spitting and other forms of antisocial malfeasance. Dr. Smith was the school psychologist who’d been assigned to observe the Woog and offer a formal report.

We exchanged pleasantries.

“So I was at Ryan’s preschool this morning,” she said.

“Sorry to hear that,” I said. “If you were a medical doctor you could prescribe yourself a sedative.”

She laughed. “I’m used to it.”

“I believe you, though I don’t see how that’s possible.”

“Oh, well, you know. People can get used to pretty much anything.” In the background, I heard the sounds of clicking, typing, ruffling papers. “Are you at a computer?” she asked.

“Uh, no. But I can be.”

“If you have a minute. I just emailed you my final revision of Ryan’s report.”

I asked her to hang on while I went upstairs to my office.

I opened the PDF she sent and stared at the bewildering bureaucratic template Mommy and I would become all too familiar with: subsections embedded within sections underneath headings and subheadings like a trove of Russian nesting dolls, the whole litany occasionally punctuated by form boxes that could barely contain their bulging, unspaced paragraphs.

“All right, I’ve got it open. So what am I looking at?”

Dr. Smith referred me to the observational section in her report. I scrolled to it and read:

• Ryan arrives at school, hangs up his backpack, approaches a group of kids and pinches one of them
• Ryan arrives at school, hangs up his backpack, and takes one of the game pieces from some kids playing Candyland
• Ryan arrives at school, hangs up his backpack, and tries to stuff a pillow over another boy’s head

“Jesus.” I shut my eyes and pinched the bridge of my nose. “His mother and I will sit down with—“

“Have you considered autism?” Dr. Smith asked.

Oh boy. That again.

A pediatrician in Florida had been the first person to mention autism, following Ryan’s first developmental exam. Apparently that assessment was made, at least in part, because the Woog didn’t look at the doctor when he said hello.

He doesn’t like you, I’d thought. Gotta say I don’t blame him.

Ryan’s pediatrician in Pennsylvania had been the second one to float the A-word, following the Woog’s preschool checkup.

He’d been harder to dismiss, since Ryan did like him — and even put on a rather precocious (if perseverative) reading display for him.

Regardless, I’d insisted that Ryan was not autistic. I had seen videos of autistic children. And not just the kids who acted like Rain Man, but kids from all points on the spectrum. Ryan didn’t resemble any of them, I’d maintained.

For one thing, he was highly verbal (though much of what he said was difficult to understand).

For another, he did make eye contact (though often not with strangers).

And sure, he was, uh, fixated on ambulances and firetrucks and construction vehicles and the forklifts at Lowe’s and Home Depot — their size, their color, the number of wheels they had — but what boy wasn’t?

Yeah, okay, it’s true that he could count to 100 when he was two years old, but so what? Since when is being numerically gifted a crime? Given his father’s relative innumeracy at that age, let’s take the win, shall we?

Well, yes, when he was excited or focused on something, he did bend over at the waist and rub his fingers together as he furiously flapped his hands and sucked his teeth — what’s known as “stimming.” But hey, did you know some neurotypical kids stim too? Johns Hopkins has a lab that studies them. They think it’s a GABA imbalance.

So, maybe he’s unusual. Or even “weird.” But my son is not autistic.

“Couldn’t he just be impulsive?” I asked Dr. Smith. “When I was his age I engaged in a lot of those kinds of behaviors. The rap they tagged me with was ‘poor impulse control.’ ”

Impulsivity, Dr. Smith explained, is frequently a feature of kids with other disorders, and is a hallmark of kids with ADHD. It’s also a frequent feature of so-called high-functioning autism — which overlaps with what used to be officially recognized as Asperger Syndrome.

“I watched him,” she said. “A lot of these behaviors are him trying desperately to socialize with his peers. He’s trying to make friends but he doesn’t know how.”

I stared at the desk. I imagined Ryan at school, cheerfully wandering among the children and teachers in a kind of shroud, mostly invisible except for moments in which he suddenly emerged as a rude, bewildering irritation.

My eyes began to burn. “Oh, Woogie,” I said to no one.

“I get from talking with Ryan’s mom, that maybe you’re resistant to an autism diagnosis. Is that a fair assessment?”

I chuckled. “She said that, huh.”

“She mentioned it was a possibility.”

“Well, she didn’t mention it to me — probably because she thought I’d be resistant to being called resistant.”

Dr. Smith laughed. “Well, look. It’s not uncommon for parents to have concerns about what an autism diagnosis means.”

Yeah, no shit, I thought. Like it’s probably not uncommon for parents to have concerns about their kid being hit by a meteor.

“So you need me to sign this report,” I said.

“I do, in order for us to move forward. The fact is, an autism diagnosis will make services available for Ryan that he wouldn’t have access to otherwise. And, frankly, he needs those services.”

“I see.”

“Why don’t you read the rest of the report, talk it over with Mom, and get back to me when you’ve had time to digest everything.”

I told her I would do that.

“Do you have any other questions for me in the meantime?” she asked.

I didn’t. I was too goddamn dumb to even guess at what I didn’t know.

I sat at my desk, gazing at the first piece of school art Ryan had given me. It was for Father’s Day, a couple of weeks earlier. It was a construction paper rocket ship with a foil circle in the middle and streamers stapled to the bottom. In neat, grown-up Sharpie letters it read, “Dad, I Love You To the Moon and Back, Ryan.”

Peering at it more closely, it occurred to me that the teacher had likely made almost all if it herself. She’d cut out the circles and the triangles and the streamers and the oblong-shaped rocket ship body, and stapled and glued it all together and put it Ryan’s backpack and reminded him to give it to me when I picked him up.

At four and a half years old, unlike the mainstream of his classmates, Ryan couldn’t use a scissors reliably, he couldn’t operate a stapler, and he damn sure couldn’t print anything legible within the small confines of that rocket ship.

He was at the margins, and I was resistant.

I watched the rocket ship’s streamers fluttering in the wind spun by the ceiling fan and I marinated on why. Why, why, why. What was I resisting?

Sometime later I realized that until that moment I’d felt as if I was protecting him from an entirely avoidable calamity by denying it. Notwithstanding Ryan’s teachers, his counselors, his doctors, and even his mother, I was his last line of defense.

Autism isn’t a good thing, after all. Our society doesn’t shower autistic kids — autistic people — with plaudits and praise and confetti and trophies.

People with autism are relegated to the margins because, like all marginalized people in our society, what makes them different is despised or even feared by those of us in the mainstream. Shows on Netflix and Autism Awareness Month aside, being autistic-different isn’t like being “gifted,” or being able to throw a 70 mph fastball when you’re 10 years old.

But on a more practical level, I was (and am) ferociously resistant to anyone treating Ryan differently because of a diagnostic label.

I’m not renowned for my high opinion of humanity, frankly, and beyond the drones of people out there who have an icky feeling whenever they encounter something — or someone — who isn’t standardized, homogenized, mainstreamed, I’ve also imagined even well-meaning people putting a sort of mental asterisk next to Ryan when he does something or says something. (“Huh. I wonder if that’s his autistic-ness.”) I want Ryan to have the social freedom to become who he is — good, bad, indifferent — without people filing him in a category.

It has been with this in mind that I haven’t mentioned Ryan’s diagnosis in this blog until now, even though it’s such common knowledge IRL that by this point it’s more or less background noise to most people who know him.

I have never been ashamed of Ryan being on the autism spectrum. It hasn’t affected how much I love him. It hasn’t even caused me to think of him as being different, to be honest.

It has made me savagely protective of him in a way that would probably be unhelpful to him if that savagery was unmasked. It has caused me to be a bit paranoid as a parent (more on that in another post).

Honestly, though, from comparing him to the other kids his age that I encounter, (until quarantine hit — also another post) he’s been outwardly pretty typical, except in two ways: he still stims and he’s not super talented at reading social context.

As far as this medium is concerned, however, I have worried that someone will read something I’ve written about him — a story, an anecdote, a recitation of a joke he’s told — and ascribe it in some way to him being on the autism spectrum. Because nothing I’ve written about Ryan is something I would chalk up to him being autistic. So I guess I have to trust you.

And I had to trust Dr. Smith. I’d worked with her for a couple of months by that point, and I’d had no doubt that she was very capable, experienced, knowledgeable, and caring. In my experience, when three professionals tell you the same thing, they might all be independently wrong but the odds are low. So I suppose in this case the third time was, if not a charm, something.

About forty minutes or so after we’d hung up, I called Dr. Smith back.

“Hey there,” she said. “Been a long time. Have a question?”

“Just one. Can I sign the report digitally, or do I have to mail it to you?”