I was a child psychologist specializing in autism — with 10 years under my belt — when I had my own son, James. He was diagnosed with Autism Spectrum Disorder. As a professional, I'd been really sympathetic with my harried parents. But when I had James, I became the harried one.
I quickly learned that my best quality as a mom would have nothing to do with diagnosis, school and treatment decisions, or understanding the underlying reasons for my son's often-difficult behavior. Parenting was going to require my total patience, a skill that no amount of specialized training could ever give me.
Autism is a developmental disorder that affects social and language development. It also leads to varying levels of idiosyncrasy and rigidity in behavior. That's what professionals, parents, and people with autism do agree on. The prevalence, precise definition, causes, and treatments have been long disputed. It's complicated because autism can apply to a baby or an old person, a college graduate or a nonverbal person, a comedian or a wallflower. That's why the proper name includes the word spectrum.
James attends a private school that provides support (like speech, language, and occupational therapy, as well as academic help) to children who need it in order to keep up with the others. Most of his classmates don't have autism or any disability, though.
I worked with lots of kids who were more severely affected than James. I know we're lucky in that regard. Parents would deliver these kids to me from my child-friendly waiting room, and after a few hours, I'd give them a sticker and say goodbye.
Until James, I never witnessed the mundane, messy parts that people tend to leave out of their descriptions. These are the most challenging parts for me now.
Although James holds his own at school, has friends, has a sense of humor, and plays a mean guitar, everyday hassles stress him out. This requires extreme patience on my part. Tooth brushing, getting dressed, meals, potty trips, shoe buying, packing a suitcase, clipping fingernails: These are things a psychologist never has to do with her patient.
Like Saturday mornings. Saturday mornings are hard for James, because like most people with autism, he does best with the consistent, predictable routine of the school day. On Saturday our plans vary, and sometimes we have something exciting to wait for. I called this "anticipatory anxiety" at the office. James and I call it "waiting worries" at home.
On the day of James' classmate's fifth birthday, I wasn't sure if either of us could survive to see the party. It was 9:30 a.m., and we'd just come to our senses after a three-hour blitz of on-and-off tantrums. At this age these involved mostly urgent needs, crushing disappointments, crucial lost items, misunderstood demands — all accompanied by noise ranging from a dull whine to what I can only call a roar.
There was no harmonious way to fill the 3.5 hours since he'd woken up.
I felt like calling it a day, but it was time to get dressed and go. If we stayed home, I'd be letting the anxiety win, proving to James that birthday parties were too much for him to handle. And it was so important for both of us to socialize with his classmates.
These are the sorts of conversations we have:
"Mommy, can I wear my shoes at the party?" James asked. This would have been a reasonable question if I hadn't already answered it hundreds of times over the past week.
"Honey, turn around and face me. Now, we already talked about this. You put your shoes on a shelf and just wear your socks on the spacewalks."
"What if I wear my shoes on the spacewalk? Will they ask me to leave?" Here again was the droning monotone that always put me on edge. It meant that he could still lose his newfound cool. James turned sideways and lifted a leg, leaning over precariously.
"Turn all the way to face me, Sweetie. We don't need to talk about what-if, because it's no big deal to take off your shoes. You like spacewalks."
"But what about the loudspeaker? Are they going to use it?" James remembered the loudspeaker from a previous party.
"Just like at Peter's party, they'll announce over the loudspeaker when it's time to go to the other room, and when it's time for cake. It'll be just the same."
"But, Mommy, what if I scream when they do it? I don't want to hear the loudspeaker." He covered his ears and bared his teeth. James allowed me to move his hands to my shoulders, so he'd be steady enough to get into his pants.
"Honey, if you're worried about the loudspeaker I can help you with that." Pants on, time for the shirt and socks.
"Well, who will say it? Where will they be? What if I scream? No socks. I'm not wearing socks. Will they let me in?"
Only an amateur would get agitated at this point.
I listened to — admired, even — my own soothing voice. "Man, if you don't wear socks we can't go. They have a rule. And it's fine if you don't want to go." James stuck out a foot at an angle that looked orthopedically impossible. We would go to the party.
James had a great time, and nobody was the wiser about what had gone on at home beforehand. But I was exhausted.
I wanted to ask James if we could just skip the three-hour tantrum and the obsessive questions next time, and if we could go straight to the fun part. As if he wanted to act the way he did, as if he had some control over himself.
I'd heard other parents say the same thing. My psychologist-self used to explain that kids like James can hold it together until they get home, where they feel comfortable expressing their anxiety. Much like the mother who has a rough day but stays calm at the office, and then comes home and yells at her kids for the smallest infraction.
I worked so hard to get parents to see their child's perspective. The child's anxiety had become unbearable, and the parent needed to bear part of that burden with patience.
What I couldn't fully see until it happened to me, was the larger burden placed on the parents. Parents who were already hobbled by their children's needs, and by the hassles of everyday life.
My mother-self now knows exactly how much I was asking of them. Autism is something both child and parent experience.