by Amanda Parry
Every now and again, someone will ask, “Is Jack (not his real name) really autistic?” If I weren’t so friggin’ pleasant and well mannered, I would reply: “He’s not. We just enjoyed schlepping him to Sunshine New Horizon Keystone Crossroads Touching-of-the-Good-Kind Therapy five days a week when he was a toddler. The waiting room had battered, sticky issues of ‘Woman’s Day’ from 2007, and you know what a sucker I am for 10-minute dinner recipes.”
Obviously, this question touches a nerve for me, even though it shouldn’t. Most people think of “Rain Man” when they hear the word autism, and that’s just not my son. Jack looks nothing like Dustin Hoffman. If you dropped a bunch of matches on the floor and asked “How many?” he would eye you warily and walk away. I’ve tried.
He interacts socially with about as much ease as your average 6-year-old, which isn’t saying much, but is probably more than Raymond Babbitt — the real Rain Man — could muster. What acquaintances don’t realize is that it took years of therapy for him to get here, and that the so-called “social unease” associated with the condition is only one of many ways it manifests.
To be fair, I knew little about autism myself when Jack’s pediatrician suggested he might be “on the spectrum” at his 18-month checkup. It never occurred to me that this could be the reason for his speech delays or his constant humming or his tendency to line up alphabet blocks in correct order — from A to Z and Z to A — on the kitchen floor.
When his doctor recommended enrolling him in preschool so he could be around typically behaved kids, I readily agreed. It wasn’t long before his teacher approached me to suggest that he might have autism. “Yeah, his doctor suspects that, too,” I said.
The times I observed or helped at school, it was obvious his behavior was atypical. Most of the kids ran around exploring and climbing or hitting each other and screaming. Jack withdrew to the play house in the corner with a book, humming to himself. While most of the kids couldn’t wait to paint with their hands or dig in the sandbox, he sobbed with anxiety if anything remotely sticky or gritty touched his skin.
But even if I hadn’t believed his teacher or his doctor, the changes that came over him when he started an intense course of therapy — including speech, occupational, physical and feeding — would have convinced me. Once you’ve seen a child’s entire demeanor change because you body brush him every day or have him wear a weighted vest, you’re pretty much ready to drink the Autism Spectrum Disorder Kool-Aid.
The first time he agreed to touch Play Doh, I snapped pictures. When he spoke his first sentence shortly after the age of 3, I wiped away tears. Jack continued therapy until the age of 5. He still gets regular evaluations to see if he needs more help, and we have been prepped in exactly how to encourage typical behavior.
Unless you know what to look for, he comes across as an average kid. Perhaps a little obsessed with machines, numbers and the exact time, but otherwise fine. So why, if we have pushed him to behave typically, does it bother me if people doubt he has autism? Because I am a defensive, neurotic mother. Duh.
As parents, my husband and I made a lot of tough decisions regarding whether and how to seek treatment for him. We agreed to an MRI, which involved putting him under anesthesia, which was just a sucky experience for all involved. We let complete strangers take him out of his comfort zone, often making him cry, in the name of therapy. We have kept a strict daily routine that has friends convinced we are borderline lunatics.
“Would it really make a difference if he at ate dinner at 6 instead of 5?” another mom once asked. Trust me, if you have to ask that, you’ve never dealt with the complete emotional breakdown that comes of messing with a Spectrumite’s sense of order.
So, when someone asks, “Is he really autistic?” what I hear is “You did all that for nothing” or, “You are making a big deal out of nothing.” Oh, how I wish. My husband and I didn’t choose this for him; we accepted it. We didn’t get a free tote bag from the National Autism Society when he received his diagnosis. (I asked. They hung up on me.)
The most you could say we “got” was an excuse for when he does something irredeemably socially awkward. And that is cancelled out by the fact that he has done something irredeemably socially awkward. When Jack’s autism was more apparent, I was terrified he would be victimized for it. Now that it only comes out here and there, I worry people will think he’s just a weird kid.
In my mind, having autism is nothing to be ashamed of. I’m not gonna go as far as the strange lady who suggested his condition makes him some sort of prophet. The kid thinks the garage door responds to the sound of his voice, so let’s not go nuts. But just being weird is another story. I was weird growing up. (Hard to believe, right?) It sucked. And like most parents, I devote a lot of energy trying to guarantee that my children avoid the hardest parts of my own childhood.
What’s glaringly obvious is that the only one I can change here is me. I need to acknowledge that the few people who question his diagnosis are probably just curious. If they really do doubt it, I just have to remember what my grandmother always said: “Some people are &%*#ing &%*#wads. &%*# ’em.” (I’m paraphrasing. Sue me.)
Before I sign off, the word nerd in me wants to explain why I refer to Jack as “having autism,” and not “being autistic.” Long before I had kids, a colleague whose son had autism gave another colleague a verbal smack down for referring to someone as “being autistic.” (Someone who did have the condition, that is. She wasn’t just being a weenie.)
When you call someone autistic, he explained, you make autism their sum total. When you say they have autism, you acknowledge it’s only a part of them. It’s an interesting distinction and nails exactly how I think of Jack. My son has many characteristics: a curious mind, a generous spirit, strength, stubbornness and, of course, autism.
And yes, I’m pretty damn sure of that, so stop asking.
Amanda Parry, 38, grew up in Chestnut Hill and attended Germantown Friends School from kindergarten through 12th grade. She graduated from the University of St. Andrews in Scotland in ’98 and taught English in Japan before moving back to the U.S. to write for small newspapers in Pennsylvania and New Hampshire. In 2005, she married and moved back to the United Kingdom, where she headed communications at the American School in London. Amanda is the mother of two special needs children: a 6-year-old son with autism and a 4-year-old daughter who has developmental delays due to an ongoing battle with cancer. Amanda started the blog UnexceptionalParenting.com to let off steam, chronicle their journey as a family and, she hopes, draw some attention to autism and pediatric cancer charities. She lives in North Carolina. Her parents, George, a former federal prosecutor, and Natalie, still live in Chestnut Hill.