James has a talent for voicing thoughts. Once in a doctor’s waiting room he exclaimed, “Mom, that loud TV is making me nervous, and I’m here to get my blood drawn, so I’m already nervous enough.” Several people applauded, and I asked the receptionist to turn off the TV.
I know the symptoms of James’s autism are less profound than what a nonverbal, institutionalized adult with the same diagnosis experiences. But as his mother, that’s not my reference point.
Not anymore, anyway.
James was born 15 years after I started training to be a clinical psychologist. As he developed from fussy baby to frustrated toddler, it became clear that he could have been referred to me at some point for treatment. Before I quit working to care for James and his sister, I identified autism where it wasn’t obvious. I helped kids and adults succeed in mainstream settings. Having qualified for a diagnosis, their autism was real. But with certain accommodations in place, the label became less relevant. They could fit in almost anywhere.
My patients included a 50-year-old man who was an integral part of his family business, a high school student with plans for college, and children in mainstream preschools getting speech therapy for language delays. At the time the word “autism” felt inadequate; it didn’t convey their potential, or the abilities they had despite their disability.
Although autism was first named in 1943, the 1980s and 1990s saw a renewed focus on labeling. British psychiatrist Lorna Wing, also an autism mom, began describing autism first as a “continuum,” then as a “spectrum.” Modifiers, such as “mild” or “high functioning,” and alternative labels, such as Asperger’s syndrome and Pervasive Developmental Disorder — Not Otherwise Specified, were meant to capture the higher end of the wide range of presentations and outcomes among people who qualified for an autism diagnosis, and to combat the stereotype of autism as a tragedy.
To put this in context, the first major Hollywood film with an autistic main character, Rain Man, came out in 1988. Dustin Hoffman’s character, Raymond, could talk and had extraordinary math skills, but lived in an institutional setting. In 1986, a professor of animal studies, Temple Grandin, published her first book about her autism. She published another book in 1995, and in 2010 Claire Danes starred in a movie about Grandin’s life.
James’s autism is by no means a tragedy. But his sudden, intense meltdowns create mini-tragedies in our home every day.
The other day, James and his sister Margot needled me for mouthwash. Always happy to encourage good hygiene, while Margot watched I poured them each a swig. Ten-year-old James missed this part.
“Okay, here you go,” I said, handing James the cup.
“I don’t want that,” he whined, pouring it down the sink.
“Man,” I said, “you just wasted that. That costs money, you know.”
“No, it doesn’t!” shouted James. Then he noticed his sister swishing and spitting.
“Gimme some more, then!”
“What?” I said, offended by his tone. That’s when I realized the mouthwash was clear, like the water he thought it was.
As if confusing the brake for the accelerator, James hurtled on. He began beating his wrists on the bathtub’s edge. “I hate myself! I’m going to break my arm! My brain is broken!” As I got between him and the tub, he seized my elbows and pushed. He watched with alarm as I fell backward and sat down hard on the bathtub’s edge. Tears sprang to his eyes.
It’s hard to stay calm when the bedtime routine escalates into a wrestling match. I said, “You don’t push me. Go to your room.” Margot slid out of the bathroom.
“I won’t go to my room. I’ll come out. I’ll push you all I want,” James said, the tears starting to flow, his breath quickening.
It was a misunderstanding. All he had to do was hit the brakes and clear it up: “Oops! I thought it was water!” Instead, he clung to his initial reaction as if it were his only option. In my profession, we called it behavioral rigidity. Some people with autism call it “defense mode.”
“High-functioning my a–,” I muttered after the kids were in bed, my heart still pounding. I hated myself for having used that modifier with my patients.
A child with an autism diagnosis, no matter how intelligent, charming, or funny, has challenges, and they aren’t mild. According to a recent article in The Economist, Britain’s National Autistic Society survey found that only 12 percent of so-called high-functioning people with autism in that country have full-time employment. As reported in Science, another study found that autistic adults without a learning disability were nine times more likely than control subjects to die by suicide.
These grim statistics are no surprise to me, because they have to do with impulse control rather than overall ability levels. What good is a spot on the honor roll to a child who’ll brandish a butcher knife if you take away his TV time?
Modifiers have no place in a home where a child aces 20 math problems, builds a stuffed animal fort with his sister, devours a plate of meatloaf, shoots 20 baskets on his closet-door hoop and then sparks instant chaos without warning. Over mouthwash. Only strong effort makes James as competent as he is — most of the time. And sometimes even that isn’t enough.
Public understanding of autism, as well as my own, has improved over the past 20 years. It’s neither all ability nor all disability, but it’s always some of each. James could go to college. He could end up with a good job, a long-term relationship, children. But a happy ending won’t come easily. Given his hair-trigger temper, his intensity, his impulsive behavior, he’s more likely than most people to end up in a heap of trouble.
With the publication of the Diagnostic and Statistical Manual of Mental Disorders-5th edition in 2013, professionals made the spectrum concept official. It’s now autism spectrum disorder for everyone who qualifies for a diagnosis. No more modifiers or alternative labels. And that’s as it should be.
Lynn Adams writes about quirks of child development. Her work has appeared in The Washington Post; Salon; Brain, Child; and Narrative.ly. Follow her on Facebook or Twitter, or subscribe to lynnadamsphd.com.
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