My lessons in autism

For years, I'd been an expert in the disorder. But when my son was diagnosed, I found I had a lot to learn

Topics: Real Families, Autism, Motherhood, Parenting, Psychology, Stay-at-home motherhood, Autism Spectrum Disorder, Editor's Picks,

My lessons in autismA photo of the author and her son

“James is so lucky to have you for a mother!” I’ve heard it so many times, I should have T-shirts printed. When you develop a professional specialty over 15 years, study with experts, become one yourself, and then give birth to a person who might have been referred to you, people think you have an insider’s advantage. So James is lucky, my clients are lucky. It’s been hard to resist seeing myself as unlucky.

If I were a villain, it would be sweet justice. But I’m not. I’m a child psychologist specializing in autism spectrum disorders, and it turns out that the first of my two children fits those diagnostic criteria.

My professional training has saved me some time and spared me some uncertainty. But what makes for a good psychologist doesn’t make for such a good mother, and vice versa. So, my dirty little secret is that James and my clients aren’t so lucky after all.

* * *

When James was in preschool, I’d see four or five mothers on a typical workday. Jessica was one of them. By the way, Jessica’s not her real name, and James isn’t my son’s real name. I’ve changed some names and identifying details. One morning, Jessica’s son had gotten into her makeup. He’d smeared mascara on the toilet seat, lipstick on the cabinet and on his knees, thick and pink like frosting. He’d mistaken the foundation stick for a Dreamsicle, and then spat it out on the fuzzy bathmat.

The same thing had happened to me a few times. Seven a.m., late for work, I’d step from the shower and put on my glasses to reveal Jackson Pollock’s studio.

My 3-year-old, her 4-year-old.

Jessica was 23 with sleek brown hair and coffee-colored eyes to match. Her jeans, doubtless a size zero, covered her platform sandals just the right amount. Her trim pink T-shirt barely covered her flat stomach. It was like looking in a fun-house mirror and seeing a young, beautiful version of myself.

I flipped through her son’s chart. I’d known her since David was 18 months old, and I’d diagnosed him with autism. She’d gotten pregnant during college, and before the birth her boyfriend had died in a motorcycle accident. She’d moved in with her parents.

“He ransacks the bathroom every time I turn on the hair dryer,” she said. “It’s loud, I’m distracted, and he just goes to town.”

At least she could turn on the hair dryer. I had to wait until my son was a block away.

I smoothed my damp ponytail and asked what she’d tried so far to distract him.

“I put the TV on, but that never lasts long.”

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I talked about David’s “mental age,” as opposed to his “chronological age.” Although David was 4 years old, he didn’t speak. He couldn’t mark with a crayon, couldn’t follow simple directions or play pretend games. Recent testing had estimated his mental age at roughly 1 year. A 1-year-old, especially such an active one as David, couldn’t be expected to watch TV for any length of time. If Jessica really wanted to keep him occupied and out of her stuff, she’d have to find an alternative better suited to his interests. Like water play, or squeezy toys, musical switch toys. We made a list.

The official name was “Parent Guidance,” but I saw it as foreign language translation. My talent was to take the perspective of the child, and show it to the parent. There’s a lot of diversity among people with the autism diagnosis. Although James and David shared a diagnosis, James could talk and went to a regular preschool. He was 3 years old both mentally and chronologically. So, James and David were different boys. But becoming James’ mother was still disorienting to my role as professional, such that I couldn’t help shifting back to the parent’s perspective, no matter who the child was.

“My mom’s always on me to pick up David’s toys,” Jessica was saying. “But there are only so many hours in the day.”

“You do have to cut yourself some slack,” I agreed. I had found, though, that if my house was organized and neat James had fewer tantrums about losing things, and played on his own for longer periods. But when was Jessica going to find the time to get anal about her living room? I couldn’t bring myself to suggest it.

Jessica looked at her watch. Time was up. I charged her $125, and made another appointment a week away.

I picked James up at preschool, then headed home. My mother, who at that point was also our nanny, reluctantly handed me my beaming 1-year-old daughter. James leapt into Grammy’s arms, then kicked his legs like a jockey and lunged toward the stereo. She put him down, and he deftly selected U2’s “Joshua Tree,” and they settled in to listen to “With or Without You.” James strummed the electric guitar printed on his T-shirt and crooned, “Hooo. Hooo-uh-hooo-uh.” My mother ruffled his hair and gazed at him as if he were Bono in the flesh.

It was a rare, harmonious homecoming scene, but it didn’t last long.

The song ended. James hunched over his music basket and began tossing things aside. A guitar pick skittered under the sofa. Sleigh bells jangled as they bounced off the wood floor. A drumstick lodged under my toe.

“Mommy, where is it, where’s my slide piece?”

Before I could open my mouth, James threw himself, writhing, into the pile of instruments. “I need the song where the Edge uses the slide piece on his electric guitar and wears the 7-shirt. It’s not in here, Mommy. Find it now!”

My mother plopped down next to him and began shuffling through the instruments. “What does the slide piece look like, again, Lynn?”

James clenched his teeth and wrapped his fingers around a wrist.  “I’m going to break my arm. Will I need a cast?” His wide eyes projected both hope and concern. My mother rummaged frantically.

“James,” I said. “You don’t need help finding your slide piece. I can see it from here. Slow down and look through the pile. That’s how we look for things. It takes time, but we find them.”

“Where is it?” my mom asked, looking up.

“Mom,” I raised my voice to be heard over James’ continued whining. “Slow down. It’s James’ job to find what he needs. If we do everything for him, how’s he going to learn to do things for himself?”

Nodding, my mother took James’ hand and put it on the slide piece. He caressed the little piece of metal and nudged his finger into it. “OK, now I need my 7-shirt.”

“In your room,” I said.

“I’ll get it,” my mother said at the same time.

“Mom, you’re not his servant,” I said. Wasn’t it time for this woman to go home by now?

My mother looked up from the floor. “I can’t stand to see him upset, when it takes so little just to help him!”

“But you’re only helping him in the short term.”

“Isn’t that enough?” She bent to sniff his hair. “I’m his grandmother, not the Miracle Worker.”

The lady had a point.

* * *

When I was a freshman, the Yale Women’s Center organized a panel of alumnae to discuss their career choices. It included a lawyer, a physician, a Wall Street executive, a professor, and a … housewife. There was a hush in the lecture hall when the woman admitted to this occupation. I gaped at my friend Amanda in mock horror. Why would any Yale graduate “give it up” to become a housewife? Twenty years later, Amanda’s a housewife.

And she’s not the only one.

When James was 3, I worked three days a week, spending the rest of the time with the children. It didn’t occur to me that I’d divided my time precisely in half. There was no time allotted for anything else.

The following Monday, Jessica had my first appointment of the day.

“How’d it go?” I started out. As usual, she looked like the prom queen.

“Oh, a little better, I guess.”

Here’s how my own morning had gone: My husband left for work at the crack of dawn. My mother arrived early and watched the kids while I got ready. After I was dressed, I turned to James.

“OK, man. Let’s get you dressed.”

This wasn’t what he wanted to hear, leaning on Grammy in the middle of a pile of books. I carried him, protesting, to his room.

“I’m not going to wear socks!” James declared.

“That’s fine. I really don’t care if you wear socks or not, honey. I haven’t cared about that since you were an infant.”
James clenched his arms to his sides, to prevent me from pulling his pajamas off over his head. “But I want to wear socks … What’s an infant?”

“Fine.” I tried pulling down his pants. He fell to the floor, stiff as a board. I went to his drawer and got out his favorite T-shirt, with the backhoe loader on it.

“OK. We have to leave soon. So you have to get dressed.” After a brief struggle, James was dressed. Almost.

“No socks!” he yelled, as I unrolled the little bundle.

“I thought we decided, yes socks,” I said too loudly.

“Socks! Yes!”

I started to squirm his foot into the sock. It was like dressing a corpse.

When James was dressed and lying like a pile of laundry by the front door, I dashed back to the kitchen to get his lunch. There, my mom was washing our breakfast dishes and the baby was scooting backward under the kitchen table. I searched the refrigerator for strawberries.

“Have a great dayyyy – Oop!” my mom said.

I said, “What do you mean, oop?” as I turned around to see James saunter into the kitchen completely naked. Up until James invented this maneuver, which would become a favorite mode of protest, I thought there was nothing cuter than a naked toddler. This time, I considered bringing him to school naked to teach him a lesson, the car seat straps digging into his dimpled thighs.

I heard my own soothing voice as if from an angel on my shoulder: “Try to avoid rushing if you can. It makes kids anxious, and they tend to sabotage you.”

I had an urge to slap myself in the face. I glanced around, looking for clues about how to proceed.

Grammy to the rescue: “Oh, honey, you get the baby, I’ll get James dressed.”

Back in my session with Jessica, I searched for a non-offensive way to say something. Taking care of a child while getting ready for work was like having an anvil strapped to your ankle. Two children were like two anvils. They were impediments, obstacles. Sometimes I felt like motherhood was a disability.

Was that what I’d say if I was invited back to Yale for Career Day this year?

So I said: “Jessica, we’ve talked about taking David’s perspective and understanding why he behaves the way he does, in the context of his autism and developmental delays.”

“Right,” she said, stretching.

“There are lots of things you can do to make things easier for David, but those things take time and effort. No matter what you do, he’s still going to be more time-consuming than the average child.”

“I know that.” She looked at the ceiling.

“So I can help you come up with strategies, but you’re going to need support from your mom, and you’re going to have to limit your school and work schedules.” Could I suggest she tone down the grooming time, or would that be offensive? Did I just want to level the playing field?

She’d read my mind. “If I can’t put on makeup, or do my hair, or go to school, or help with the bills, then my son ruined my life.”

I suppressed a “me too” as if it were a belch.

A pause, while Jessica looked at her lap. She looked up and smiled tightly. “Just joking.”

My favorite supervisor in graduate school had said, “There are no jokes.”

If Jessica let something slide, she could go from pretty college student with her whole life ahead of her to just a mom. I didn’t know it yet, but that would be my fate, not Jessica’s.

“It’s a balancing act.” I felt like a commercial for antidepressants. “Sure, you let things slide, but you get to decide which things.” Look at me. I gave up being attractive. Jessica looked at me steadily with wide, glazed eyes.

While we were scheduling her next appointment, Jessica asked how I liked working part-time.

“Oh, it’s really the worst of both worlds,” I said, with my own tight smile. “Wait. That’s not right.”

Jessica burst out laughing in a way she’d never done with me before. “I think you’re trying to say the best, Dr. Adams.”

But I wasn’t. Or, rather, I knew I should be honest with Jessica. I was a mother in a white lab coat and a professional who wanted to cry on her clients’ shoulders, a little bit wrong everywhere I went. Leo Kanner, who gave autism its name in 1943, described his patients’ resistance to change. How could I help my clients and, more important, my son, when I was clinging to a theoretical life choice I’d made as a teenager?

I was the one who needed to change.

Within a few months, I’d closed my private practice and now, four years later, I’m still a housewife. As a teenager I’d have called it a sacrifice. Now it’s just a choice.

Lynn Adams lives in New Orleans with her husband and two children.

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