Memoir

I Thought I Knew Everything About Autism—Until It Hit My Own Son

As a child psychologist, I help all kinds of families diagnose and deal with autism. But the hardest thing was when I started to see signs right under my nose.

I Thought I Knew Everything About Autism—Until It Hit My Own Son

Sitting across the kidney-shaped table from me, both of us in squatty chairs, my three-year-old son’s preschool teacher Ms. Paula unleashed a torrent of positive comments. “James is a joy! He’s adorable! Oh, those blue eyes! He loves school!” Her honey-colored ringlet curls bounced as she nodded.

She kept a wide-open smile while I distractedly muttered, “Uh-huh, have you noticed anything that concerns you?” My voice sounded so quiet after hers.

With knitted brow she asked, “What do you mean?”

I sighed and sat back, and said a tad bit too slowly, as if to a student, “Well, for example, he has his pronouns completely reversed. ‘You’ is always ‘I,’ and vice versa.” I adjusted my glasses, fingered the lock on my briefcase.

Ms. Paula had probably been a cheerleader in high school while I’d been cramming in the library. She wasn’t a licensed teacher, but she had three children of her own and plenty of experience with preschoolers. She looked around the large, tidy room for a bit and then said, still smiling, “Pronouns are really hard for some kids to master.”

Who did she think she was dealing with? “No,” I said, “they’re not. Maybe for a few weeks and with some inconsistent mistakes, but they catch on. Plus, it’s confusing.” Ms. Paula was the one who looked confused now.

I’d heard my son, who I call James here to maintain his privacy, tell Ms. Paula that morning, “You want the backhoe loader.”

“No, James,” Ms. Paula had said, “I don’t need the backhoe loader right now. But thank you.” James set off to find the toy himself. A less excellent child might have slugged her.

Ms. Paula was reaching across the table toward my arm. “But I’ve had other students with the same problem.” The smile softened, her head tilted.

“Oh?” I asked, “Were any of them not autistic?”

And her smile went away. I’d said the A-word. Now she hated me, and I hated me too.

James, age three, in the family’s backyard in New Orleans.
James, age three, in the family’s backyard in New Orleans.

I specialized in early diagnosis of autism spectrum disorders for ten years; I know what it’s like to be the first person to realize that a child has autism. James was different, though, because he was my own son.

Most parents – not just me – notice signs of autism around age two, but many don’t get a formal diagnosis until age five. That leaves an in-between period of three years. I spent those three years questioning my competence, both as a mother and as a psychologist. If I was wrong, I was a quack who saw autism wherever I looked, and my child was struggling because I was a bad mother. If I was right, my son had autism. Of those two options, I leaned toward being wrong.

Even as James started speech, language and occupational therapy, my gentlest friends reassured me, and my more assertive ones questioned that there was anything wrong with James: he was a boy, he’d had a lot of ear infections, we had close relatives who’d been late talkers, he had a passive personality, there was a new baby in the house, the cat had just died. Nonsense.

Ask my husband about James, and his face would light up. He’d point out that James started playing air guitar at the age of two, and that he had a dimple in just the right place. When people asked me about James, I rattled off my list of concerns. Although other kids his age used language to ask for things and to interact, James used it only to get me to play certain Bob Marley or U2 songs. I rarely got to see that dimple, because he spent so much of his day distressed.

As others reveled in James’ eccentricities and marveled at his strengths, I dwelled on his differences.

In my defense, it wasn’t my personality. It was my training. Psychologists know how to identify a problem, give it a name, and swing into action. To skip a step was at best sloppy, at worst negligent. I wanted the best for my own child, and I’d do whatever it took to get it, even if it meant focusing on the negative.

I began my career in the mid-1990s, during a huge push for early intervention with autism spectrum disorders. I learned specialized testing methods, like the Autism Diagnostic Observation Schedule (ADOS), that enable professionals to spot autism in toddlers.

Unlike most young parents facing an autism diagnosis, I knew what autism looks like in adults; where my son was headed. Even the smartest, best-loved adults with autism are at risk for unemployment, remaining dependent on their parents, and severe mental health problems including suicide. I knew a man with a master’s degree who did clerical work and needed help with his laundry. It was hard to look at my two-year-old with this cloud hovering over him. This cloud only I could see.

Before James, I’d helped parents focus on their children’s strengths and potential, instead of their uncertain future. It was hard for me to follow my own advice.

Lynn with James, age three, and her daughter Margot at Margot’s first birthday party.
Lynn with James, age three, and her daughter Margot at Margot’s first birthday party.

Back in graduate school, I helped out with a social skills group for adults on the autism spectrum. Ben was one of them. He had round tortoiseshell glasses that took up most of his face. Slight but with a paunch in the middle, he dressed identically to the male professors in the group: khaki pants, button-down shirt, v-neck sweater, loafers.

My first impression of Ben was that he couldn’t talk, because I sat next to him during a Bingo game and tried to engage him several times. He didn’t respond to anything I said, didn’t utter a word the entire game. But when he won a round, his slow smile was genuine, his owlish eyes warm when they met mine.

Bingo.

The next morning, Ben appeared behind me in the cafeteria line. When I said hello, he slowly fished a note out of his cardigan pocket and handed it to me. It read:

Lynn, first of all I have a bad headache and need something. I have them all the time. I like you so much I wish we could be sweethearts since I don’t have a girl. I didn’t get a certain Look magazine at the flea market because I wrote Shawn a note she didn’t like. Have you ever seen a rebus where a diamond ring represents a telephone ring? There’s a black Frisbee on the roof of one of the dormitories. How do you think we can get it down from there?

Ben was studying me carefully. It wasn’t clear which of the questions in his note was most pressing, so I took them in order. Yes, I would help him get a Tylenol for his headache. No, we couldn’t be sweethearts, but we could be friends. I was sorry about the Look magazine. It sounded like that was a punishment. Yes, I like rebuses, too.

Later, we found a broom and got that Frisbee down.

We were friends for the next six years, until I moved away. I would soon discover that Ben could talk, but he sounded like a slowed-down vinyl record. The note-writing was his way to compensate.

Ben wasn’t the professor he looked like on first meeting, or the nonverbal person he seemed like the next. When I got close enough to him, his stoic, silent exterior gave way to a merry-go-round of observations and ideas.

I knew how to have real relationships with autistic people, and I realized I needed to focus on James’ relationships, instead of what was wrong, or what name to call it, or what the outcome could be.

Everyone already treated James normally. By insisting on a diagnosis, I was asking them to stop. It seemed backwards.

But despite Ms. Paula’s complete acceptance of James, all wasn’t well at school if you took a closer look. Because James was so passive, he was missing out on the normal misadventures of preschool. He had no conflicts with his teachers or friends because he didn’t care enough about anything to fight for it.

Ms. Paula had taken James into the fold in her classroom, but it wasn’t enough. He was more a quiet bystander than a real member of that community. James’ differences were harder to ignore at home. He didn’t look for comfort. He’d just have a tantrum until I solved his problem.

It was common for me to wake to a loud roaring in the wee hours. I’d hop out of bed, go into his room, and find him in the middle of the carpet, soaking wet. “It’s okay,” I’d say. “It’s just a wet bed. Your diaper leaked. Let’s get you cleaned up.” I’m not sure if he could hear me, because he’d roar until he was in dry clothes, his sheets were changed, and he was back in his bed. Then he’d switch off the roar, finally notice me and whimper, “You wet?”

“No, honey, you’re dry” I’d say. “It’s okay now.” We’d go back and forth with “You wet?” a few times, and then he’d simmer down and fall asleep.

James went through six weeks of intensive speech and language therapy with Ms. Pat, who was easy to find because we’d worked together many times before. There were three sessions per week, plus multiple daily practice sessions at home. James and I would sit on either side of a little pile of trucks and I’d say, touching my own chest, “I want the bulldozer.” I’d look at him, hold up a pinkie finger, put my hand to his chest, and with any luck he’d say, “I want the trackhoe.”

At first it would come out, “Youuuu–I want the trackhoe.” But after six weeks, he got it straight. We also worked on questions, because James tended to make inquiries like a dotty old lady: “Daddy’s coming home … after dinner?” “I can ride the elevator at the doctor’s office … if I listen?” “The baby’s crying because … she doesn’t like that shirt?” Over time he began to use when, can I, and why.

James, age two, in the family’s kitchen.
James, age two, in the family’s kitchen.

James and I had solved a big problem with hard work. It made our daily lives much easier, and it gave me hope.

Was James so different now, in the context of our family?

My husband’s cousins, the Kellys, who all did terribly in school but terrifically in life, visited that summer. The matriarch, columnist Marguerite, compared our James to her Michael, The Atlantic Monthly editor who was killed in Iraq in 2003. Both had an early fascination with ladders, matched only by their aversion to crayons. My cousin Peter, who answered every question with “what” as a two-year-old and struggled until dropping out of high school, was now getting ready to open a restaurant with his wife. We’d recently buried my grandmother, Murtha, who never had the slightest bit of control over herself when she was nervous.

Looking through the photo albums, I saw that James fit in just fine. I was the one who didn’t belong, peering at my son while everyone else was enjoying him. There wasn’t going to be a prize for the earliest or best diagnosis. By the time James was four, he’d get an official diagnosis of autism from someone other than me. But for now, James was getting the intervention he needed. It was time to be James’ mother.