Beyond Rain Man


Excerpt

1
Inklings

A few years ago, at one of my elementary schools, I met with the parents of a first grader to go over their son’s test results. In the music room I used as an office at that school, the couple settled across from me at a low table, our knees barely fitting underneath. It was the table where I worked with children, giving them IQ tests and asking them to write and draw for me. It was the table where teams of us—teachers, the speech and language pathologist, the occupational therapist, the principal, and others—met to discuss children who needed extra attention at school. It was the table where I ate my lunch while scoring test protocols and answering emails.

The boy’s father was a larger version of his son: a burly guy with short black hair and skin rosy from lots of outdoor activity, wearing khaki shorts and a polo shirt. The boy’s mother was petite, carefully made up and dressed for work in a navy skirt set. I knew from the developmental history they had filled out that she was a lawyer and that he had left his contractor job to manage the kids and house. As I opened my file folder and arranged some test protocols in front of me, he bent a large leg over the other, leaned back in the small chair, and crossed his arms. When I glanced up, her hands were shaking.

Their son, at six, was a math whiz with perfectly average intelligence and above average attention to details—he loved Legos and knew a lot of facts about dinosaurs. He had a couple of friends from preschool with whom he loved to play chase on the playground.

I started with these strengths as I went over my test results with these parents, showing them charts so they could see how their boy was just like his classmates in many ways. “He worked very hard on the tests,” I said. “And when we took a break, he told me jokes that made me laugh out loud.”

Across the table from me, they both smiled, and the boy’s father uncrossed his arms.
After thirty years as a school psychologist in the San Francisco Bay Area, I have now sat across a table from over a thousand schoolchildren. I started this gig at twenty-seven, wearing skirts or dress slacks and silky blouses, my thick blonde hair woven into a braid that hung to the middle of my back. I was ridiculously earnest, proud of being a grown-up, and petrified about whether I would be good at the career I’d just begun. I knew sign language from my work at a deaf school, and I tested deaf kids and hearing kids. I tested poor kids and rich kids. I tested kids with mental retardation and kids with IQs in the 120s and a few in the 130s. And once, a fifth grade boy with an IQ of 145. I have tested kids—and continue to test kids—in order to identify learning disabilities and emotional disturbances, and particularly in the last decade, to recognize autism spectrum disorders, the fastest-growing special education category of school-aged kids. I’ve worked at preschools, elementary schools, middle schools, and high schools. I’ve worked in the inner city and in affluent neighborhoods. My first year, 1984, I was assigned to seven schools, and I drove from school to school to school, test kits sliding around in the trunk of my bile-colored Datsun Honey Bee, mixed in with my hiking boots, 35 mm camera, and my dog’s water bowl.

Meeting with the first grader’s parents now, I moved my swivel chair back from the table and crossed my legs at the knees. No more skirts for me; I wore only slacks, sometimes even presentable jeans, and almost always my black clogs. My hair was shorter and so was my stamina for the mentally draining work of a school psychologist. But I hadn’t lost the deep desire to do meaningful work.

“Ben processes some information slower than his peers,” I said, showing them the numbers on the bell curve chart. “He also has trouble reading the other kids’ facial expressions. You know about the meltdowns here when things don’t go his way or when he makes a mistake.” They nodded in unison. “He’s sensitive when his classmates use loud voices, and he doesn't tolerate kids brushing up against him in line.” They both locked eyes with me, waiting. “His teachers told me about his frustration with writing and with moving on to each new activity. He shouts or cries or pouts when asked to make changes. And when you describe his getting stuck on how things have to be at home, his desperate need for routines that he can count on, how when he was little he didn’t look right at you and didn’t follow what you were looking at, well, all these things lead me to believe he is on the autism spectrum.”
I paused for a few seconds. No matter how many times I say this, it still makes my heart race each time. I’m not sure if a father will scowl and insist, “Not my son,” or if a mother will cry and say that Doctor So-and-So said it wasn’t autism, or if they will thank me for my thorough work and tell me they knew something was not right and that this now makes perfect sense.

“Has anyone ever mentioned this possibility to you?” I asked now.

Often at this question, parents tell me about doctors who have dismissed their reports of tantrums or toe walking or unusual love of spinning, or sensitivity to noises and clothing as perfectly normal developmental stages. Sometimes I hear about preschool teachers who suspected something was not quite right: a child insisting on certain routines, like needing to arrange the toy cars in a peculiar manner, all lined up in the same order, upon arrival each morning. Sometimes I hear about other family members—aunts or uncles or cousins—with similar quirky traits.

These parents shook their heads. “No,” his father said, crossing his arms again. “This was not on our radar.”

“It’s sometimes tough to figure it out with kids who are at the high end of the spectrum,” I explained and then launched into my talk about how broad the spectrum is and how many highly successful people—both in history and currently—are now thought to be on the autism spectrum. Maybe Einstein and Mozart. NASA folks. A good chunk of Silicon Valley. “People on the spectrum often do extremely well in life,” I said.

“We waited, we didn’t ask for the assessment until now,” the boy’s mother said, wiping away a tear that had threatened to spill over. “We thought it was a stage. Maybe we should have done something sooner.”

“How could we have known?” the boy’s father asked.

“I should have known,” she said, placing a hand over her heart and patting gently. “I’m his mother. Mothers are supposed to know.”

At some point in each of these parent interviews, there comes a time when I decide whether or not I will share my story. Sometimes I don’t share it at all. But sometimes I feel I need to, for the authority it will bring me with skeptical parents. And sometimes I do it in order to maintain rapport so we can work together on how to help their child learn. But this mother needed something else.

“I have a son—a teenager—who’s on the autism spectrum.” They stared at me as if this was impossible, the professional across from them having a son like theirs. “We got the diagnosis of Asperger’s when he was eleven,” I said, immediately remembering the cold cement floor of the huge bookstore on which I sat for two hours after we got the news, pulling books off the shelf and skimming them fiercely, desperate to know if it was true, if my kid had this thing I didn’t even know how to spell.

“I should have known what it was,” I said to the couple. “I’m a school psychologist. I should have known.”

But back then we didn’t know what we now know. When I trained in the early eighties, autism meant kids twiddling their fingers in front of their faces, making odd vocal sounds but no words. In my master’s program in the early eighties, we read about the cold, withholding “refrigerator mother” causing autism. The mother was always getting blamed back then, for homosexuality, for schizophrenia, for autism.
“It gets better,” I told the couple. “It definitely gets better. He’s in college now, having some trouble managing the workload, but things are so much better.” My son Matt had just texted me the week before: I continue to live, learn, and change. And realizing this made me break into a genuine smile, one that comes from feeling happy, not one that comes from trying to make others happy. It was true. After the years of fists through walls, a broken mirror and a broken toe, and calls to the police, it had gotten better. But I didn’t want to tell them about those scary times or the ambulance. Their son would be different in most ways; no two people on the autism spectrum are exactly the same.

It was enough for the parents of the first grader that day. Before they left my room, the boy’s mother came around the table and opened her arms for an embrace. She squeezed and then let go. “It makes me feel so much better that you know what we’re going through.”

“But he’s on the really high end of the spectrum, right?” the boy’s father asked. “I mean, we’re not supposed to go home and freak out about this, are we? He’s on the really high end of the spectrum; isn’t that what you said?”

“No, you don’t need to freak out,” I said. “You might feel a bunch of things. You might feel sad or confused or even upset at me for bringing you this news, but you also might feel relieved. Relieved to know what it is that’s been causing his emotional outbursts, his getting ‘stuck’ on everything.”

He shook my hand for a long time. “I just want to make sure I have this straight,” he said, his eyes boring into mine. “He’s on the really high end of the spectrum, right?”

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