The Keeper: A Tale of Late-Childhood Asperger's Diagnosis
For the first time in a very long time, it felt like things were okay. Good, even. Things were going to be great, in fact, and once I got the kids settled in to our new town, new house, new life ... things would only get better.
So there I was in the office of the one and only psychiatrist in town our new health insurance would pay for, who would also see children younger than twelve. My son was only seven, but for the past year, he'd done well on an anti-depressant to help control his anxiety. I'd had reservations about medicating him -- of course I did -- but it helped. It helped a lot, actually. All I needed from this doctor was a new prescription for the medication that we already knew was working fine.
I'd brought his medical records and his neuropsych evaluation results. In answer to the doctor's curt questions, I explained that he'd been a colicky baby but then a charming, social, active toddler. By the time he entered preschool he never cried; he loved school, adored his friends, and other than being a little clumsy, and maybe just a little more sensitive than the other kids, he appeared to be perfectly normal. It wasn't until kindergarten that the tantrums began. And it wasn't until first grade that a kind teacher asked us if we'd ever heard of Sensory Integration Disorder, and recommended we have him tested. Testing bore out her suspicions: He had a pretty classic case of SID, combining both hypersensitivity to touch (the slightest brush against him could result in wounded howling of "You hit me!") and large proprioceptive deficits (he struggled with balance and just generally knowing where his body was in space).
I explained all of this to the new psychiatrist. I detailed how we'd tackled the issue on all fronts; in addition to medication for the anxiety, my son had been receiving regularly occupational therapy and attending talk therapy, as well. He was doing better. Combining all of those things together, I told him, he was practically back to the old version of himself, the one who was all smiles. To punctuate my point, my son -- who'd been sitting next to me, fiddling with a couch cushion this entire time -- turned to the doctor and flashed him a wide grin.
The doctor took notes and nodded and asked a few more questions, and then asked to spend fifteen minutes talking to my son. I agreed, but when I didn't move, he added, "Alone." Embarrassed, I headed back to the waiting room, hearing my son launch into a detailed explanation of his favorite Pokemon character as the door closed behind me.
When fifteen minutes had passed, the doctor walked my son back out to the waiting room and asked him to wait for me, then invited me to come back in without him. Back inside his office, the door clicked shut as I settled back down on the couch. "Did you learn a lot about Pokemon?" I asked, trying not to laugh. It was my son's current obsession and I knew he'd given the doc an earful.
"Oh yes," he laughed. "More than I ever knew before! He's quite the charmer."
"Thanks," I said, smiling. "I think we'll keep him!" That had always drawn a chuckle whenever I'd said it before, but the doctor merely made a note on his pad, expressionless. Then he set his pen down, looking up to lock eyes with me.
"So," he said, then. "Your son has Asperger's Syndrome." He said it as though he wondered why I hadn't told him.
"What?" I said, sure I'd misheard. He was still looking at me, taking in my flustered response. "He ... no, he doesn't," I continued, briefly wondering when it had gotten so warm in his office. "He has Sensory Integration Disorder. He was just tested last year. That's all. Sensory stuff. He's not autistic."
"Why do you say that?" he asked me, cocking his head to the side. I stared back at him, baffled into silence. "I mean," he continued. "You seem ... almost offended."
"I ... uh ...," I groped for words. "I guess I am a little offended?" It came out as a question. I tried again. "You just spent less than an hour with him. His testing last year didn't say anything about that. He's extremely verbal. He's extremely social. He's never had an issue with eye contact. He has tons of friends and plays well with others. He's incredibly compassionate, always the first one to run over and ask if you're hurt or get upset if someone else is upset." The doctor was still just looking at me, waiting for me to run out of steam. "He's very social," I repeated. "Aren't people with autism ... you know ... not?"
"I haven't fully evaluated him, obviously," he said, "but I've seen kids like him a lot. We call them Little Professors. It's a kind of high-functioning Asperger's where yes, they don't have problems with eye contact and they love people, but they talk like brainy old college professors in spite of being fairly immature in other ways. Kids like him care when you're upset, but they have no idea why you're upset. They're rigid and specific about how they want things to be, though, which is the most common source of the kinds of meltdowns you describe him as having." I tried not to gape at him. Fifteen minutes. Fifteen minutes this man had spent talking to my son, and he claimed that trumped the extensive testing he'd had the previous year? Oh, I was starting to hate this man and his smug little theory.
"He's okay right now," he continued, as if he hadn't noticed the horrified look on my face, or just didn't care. "But it's going to get worse before it gets better. I'm telling you this not to scare you, but to prepare you. It's already starting to happen -- his peers are maturing in ways which he is not, and it's causing some social tension. In first, second, maybe even third grades? It's not a big deal. But in fourth and fifth grade you'll see the gap become a chasm, and relationships will become increasingly difficult for him. Middle school is usually the worst for kids like this. It will be bad, and you'll have to really be vigilant in making sure he's okay. For kids with Asperger's who are socially inclined, it's actually worse than for the kids who are happy on their own, because they want to be part of the gang and they just ... can't. You need to be prepared for that."
We looked at each other, across the few feet separating his chair from the couch where I sat, and anger burned brightly on the edges of my vision, blurring and narrowing my gaze, which after a few seconds of silence, I purposefully shifted to a point on the wall behind him.
"Okay," I finally said, in a tone that no doubt suggested it was not even a little bit okay, "can you write us a new prescription or not?"
"It's not my intention to upset you," he said, confused. "I'm sorry if I did. I thought you knew." My reaction was unexpected, and he was clearly not a person given to comforting others.
"I know what's on the paperwork I handed you," I snapped. "There's nothing about Asperger's there. This is the first time I've heard it even suggested. It's been kind of a long day and I just want to get his prescription and go home if there's nothing else." I realized I was trying very hard not to cry.
The doctor nodded slightly, wrote the prescription, and told me he'd see us again in a month, then we could go to every three months after that. I nodded and thanked him and all but stormed out of his office.
At home, my husband patiently endured my resultant diatribe. Because how dare he and who does he think he is and what kind of mind game is he playing here? I was furious. I never wanted to see him again, him and his smug, split-second diagnostic powers. What a jerk. As if my son didn't have enough on his plate.
But he was the only doctor our insurance would approve who could monitor and prescribe my son's meds. So we kept going to see him.
That first year, I kind of set my jaw and endured each appointment. Everything was fine, yes. Same as before. New prescription, please.
The second year, my son struggled. We changed meds. We added another med. We went back to the original. Every appointment seemed to find me detailing some new problem or other. Compulsive behaviors cropped up. His temper flared. His "filterlessness," as we'd always called it, had him blurting out more and more inappropriate and even offensive things. The anxiety was back. My memory of our initial meeting with "that stupid doctor" poked at my increased worrying with more and more insistence.
As we headed into the third year -- which was now my son's fourth grade year -- everything seemed to come to a head. My son was getting in trouble at school, friends were telling him they didn't want to play with him anymore, and he was so anxious I couldn't decide who was more miserable: him or me. At our next regular med check I sent my son back to the waiting room for a minute, and then I turned to the doctor. "Do you remember our first appointment?" I asked him, before he'd even closed the door. "Do you remember when you told me you thought he has Asperger's, and I thought you were nuts?"
"Yes, I do," he said, calmly, settling into his chair.
"I think it's time for you to say 'I told you so,'" I said, trying not to choke up. "He just ... it's like all his friends are growing up and he's still five. He can read on a high school level but he can't cope with the most basic of social interactions without ending up convinced that everyone hates him."
To his credit, he never said "I told you so." And it probably won't surprise you to hear that these days I find myself rather fond of the no-nonsense doctor, in an odd way.
We had the evaluation, and the Official Diagnosis, and the countless IEP meetings that followed. As I write this, my son is about to start fifth grade, and I pray daily that it will be an improvement over fourth, which was truly the hardest year of his life thus far. I also know that it might not -- probably won't -- be. I know that we will likely opt to homeschool him through middle school. I know we have miles to go before he will feel truly comfortable with who he is.
But I also know that that more we embrace exactly who he is, the closer he gets. Since becoming "official" we've talked about it a lot, and read books together, and made an effort to meet fellow Aspies. This past year brought the unexpected gift of a best friend who is "like me, Mom!", which had the incredible side benefit of bringing me a fellow local mom who Gets It. We can watch our boys together and neither of us needs to apologize or explain away their quirkiness; they're just our boys, and we love them.
I'm not going to lie; I still often think that if I had the option to take this particular cup from my son, I would. I'd rather he be dumb but happy, I've confided to just a few trusted loved ones in the past, than have this amazing, brilliant mind that so badly wants to connect with other people but often can't seem to decipher them. I know, I know that he will find his way and be an amazing adult, but to watch him now, while it's so hard for him ... it's heartbreaking. Someday is hard to remember when today so often takes all your patience, you know?
Talking to Aspie adults has been a lifeline in keeping my hope afloat. While the psychiatrist was quick to tell me "it gets worse before it gets better," it's those folks who've walked out the other side who can actually tell me about the "better," and assure me that it's real. Every "I wouldn't want to be neurotypical" comment is a gem I hold onto and savor.
I can tell you the exact moment when I knew he'd be okay. We'd gotten together with some folks the kids had never met before, and they brought their kids, too. I happened to overhear my son, just a little while into the visit, saying, "I have something called Asperger's Syndrome. So, you might think I'm a little weird. That's okay. Sometimes I don't realize I'm talking a lot, or I'll say something rude by accident. Just let me know if I do. I really want us to have fun today." The other child took this little speech in stride, and they ran off to play together. No one else had heard the exchange, and I smiled to myself, even as I blinked back tears.
I think we'll keep him.
[This piece originally appeared on The Thinking Person's Guide to Autism.]
BlogHer Contributing Editor Mir is awed and humbled by both of her children on a regular basis. She blogs near-daily about issues parental and otherwise at Woulda Coulda Shoulda, and posts all day long about the joys of mindful retail therapy at Want Not.