Since he was old enough to walk, my son, Archer, has gone in circles. He was diagnosed with an autism spectrum disorder at age 2; his earliest symptoms included a tendency to spin his toys. When he became ambulatory, Archer started spinning his own body — not in a "whirl around until dizzy" way, but in quick jumps and turns, while pacing back and forth and talking to himself in a barely audible singsong.
Archer is 13 now, taller than his mother, and he's still half-walking and half-running in tight ovals, carrying on hushed conversations with himself. At first glance, most anyone would see Archer as a typical teen. In the back seat of my car on the way to school, he sprawls out, iPad or iPhone in hand, looking like a loosely assembled collection of limbs. Then he hops out, straps on his backpack, and does an awkward half-sprint to the junior high courtyard, in the unselfconsciously uncool way common to so many of the autistic and people with Asperger's.
A few weeks ago I picked him up after class, and we went through our regular routine, where he tells me, period by period, what he did that day. One advantage to having a communicative, detail-oriented autistic child is that my wife and I hear a lot more about what happens at school than most parents of teenagers do.
At some point I have to tell him he can't spin and mumble in public or people will think he's crazy
On this day, he walked me through what happened in choir, biology, algebra, history, literacy (the fancy new word for "English"), computer business applications, and then "career orientation," which is where the school district dumps a lot of life advice that when I was growing up would've been handled in assemblies.
This hour of career orientation was all about registering for ninth grade and knowing which credits are needed to graduate. The conversation made me feel mildly panicked, because it reminded me that the countdown clock to Archer's adulthood keeps ticking closer to zero. And while his school has a rundown of courses he'll need to take before he can move on, I have my own alarmingly incomplete checklist of what he needs to know before I'll feel comfortable about sending him off to college.
Here's number one: at some point I have to tell him he can't pace and spin and mumble in public or people will think he's crazy.
Why I'm making the checklist
Autistic spectrum disorders present as a collection of tics and social handicaps, which vary from person to person. The severely autistic are often nonverbal, and can spend hours each day rocking back and forth and humming, in their own worlds. But even the "high-functioning" — like my son — exercise self-stimulating behavior called "stimming." Some flap their hands, or fidget with a favorite object. Others make guttural noises, producing vibrations in their heads that drown out other sounds.
For decades, this aspect of autism was framed as a torment, akin to someone with obsessive compulsive disorder being unable to walk past a doorknob without turning it three times — or as a defense mechanism, keeping other stimuli at bay. One of the best-known autists, scientist Temple Grandin, has described the sensation of stimming differently, calling it something pleasurable, neither a curse nor a shield.
Archer has shed a lot of his stims over the years. He used to rapidly flip his fingers around, forming them into the rough shapes of numbers. When he stopped doing that, he started carrying around an erasable slate, onto which he'd scribble figures quickly and then wipe them out. Then he replaced the slate with a calculator. Now when he paces about and talks to himself, he's often doing advanced calculations in his head.
But while Archer looks literally lost in thought when he's stimming, he can snap back to attention in an instant. That's why at the beginning of each school year, when my wife and I are going over Archer's Individualized Education Program with his new teachers, I always tell them that when it comes to his quirks, "Be understanding, not tolerant." In other words: know that he may feel the need to get up and walk around in the middle of class, so don't get angry with him for that, but do correct his behavior if it's disruptive. He can follow directions.
The pre-college checklist
Lately, as Archer gets ready to move on to his last four years of public school — when everything really starts to matter, in terms of whatever he decides to do after he graduates — I find myself wondering if I should take my own advice. I've been plenty understanding toward Archer, giving him his own space at home to be as autistic as he wants to be. But it may be time to be less tolerant, starting with telling him that if he wants to ramble around aimlessly and mumble numbers, he needs to stay in the backyard, where the neighbors won't see him and contemplate calling the cops.
Here's what else I need to talk with Archer about before he graduates from high school.
1) The importance of "good hands"
Archer doesn't do this as much as he used to, but he still has a tendency to tug at the crotch of his pants, adjusting himself unsurreptitiously. When he was younger, we'd correct him by saying, "Remember to have good hands."
We'd also remind him to respect other people's personal space, and not to reach out and touch them without their permission. One of my biggest fears is that one day he's going to casually grab at some friendly acquaintance's face with one hand while he's scratching himself with the other, and bang! He'll end up in jail for sexual assault.
2) How to cook
Because I'm usually in a hurry to get a meal on the table, I haven't taken the time to show either of my kids how to prepare even the simplest food. If I told Archer to make his own breakfast or lunch, he wouldn't know where to begin. He may have a meal plan in college, but at some point he's going to have to feed himself, even if it's just grilled cheese and tater tots.
3) How to keep his body and his room clean
When Archer reached adolescence and started to smell a bit, I had the talk with him about showering more diligently and using deodorant, and since then body odor hasn't really been a problem —although his sensory issues mean that he doesn't wash or brush his hair as well as he should.
His experiences with orthodontics have improved his toothbrushing skills, which shows me that if properly motivated I could get him to be more liberal with the shampoo in the shower. It's going to be harder, though, to find a good reason (beyond bribery) to get him to do dishes or laundry, or to use a dust rag or mop. If I can find a way to explain it to him logically, maybe I can get him to understand why he's going to have to tear himself away from his computer or iDevice long enough each day to do some basic housecleaning.
One of the misconceptions about raising an autistic child is that it's unlike raising any other child
4) How get himself around without driving
I can't think about this one too hard without getting sweaty palms. Archer is very selective about what he focuses on at any given moment, which means I could easily see him getting distracted while driving a car and making a catastrophic mistake. Either he's going to have to live somewhere with good public transportation, or Google's going to have to get its self-driving cars to market sometime within the next five years.
5) How to manage money
Archer's never been like Dustin Hoffman's character in Rain Man, unsure about the true value of $100. He loves numbers and is fascinated by games and scorekeeping, so I have no concerns about him handling a bank account or paying bills, especially in this era of direct deposit and direct debiting. I do worry a little bit about how he enjoys playing games with gambling elements, though. Every chance I get, I talk to him about the evils of state lotteries and the terrible odds in casinos, hoping to impress upon him that if he gambles with real money, he'll likely lose.
6) Why it's important to keep up with pop culture
My son has no interest in movies, watches very few TV shows, and really only listens to the local classic rock radio station because they have regular weather reports. Human behavior confuses and bores him, and since that's the subject of most popular art, he doesn't pay close attention to any of it. And while it's hardly essential that he be hip to what's going on in the mass media, it'd certainly give him something else he could talk about with kids his own age.
7) How to talk about controversial topics like politics and religion
We take a lot of long walks together as a family, and whenever we discuss the issues of the day, my wife and I let Archer and our daughter know where we stand — but we try to give the other side, too, and encourage them to make up their own minds. I never want to tell Archer how to vote or what to believe. I'm afraid, though, that I haven't made it clear these are controversial topics, and that he should be sensitive to other people's opinions whenever he brings them up — especially if he's talking with his grandparents.
8) Sex and love
Thanks mostly to biology class, Archer has a clinical understanding of human sexual reproduction. And thanks to that catch-all career orientation class, he's been duly cautioned about premarital sex. (He knows that if he has a baby when he's too young, he'll have a hard time getting a good night's sleep or balancing a budget. Those were his main takeaways when that subject came up at school.) But because he's shown no signs of any sexual attraction or romantic interests, it's been hard to find a way to engage with him on the larger question of what it means to date, to have sex, to get married, and so on.
9) How to make conversation
Archer gets better every year at having conversations in which he actually listens to what other people have to say before encouraging them to continue (rather than jumping in and changing the subject). But he still has a habit of latching on to something that interests him and then discussing it in tedious detail. At some point he needs to realize that "a conversation" is not just him reciting all the variations in "Fortune Street" rules.
10) How to make friends
Because we've lived in the same smallish town (pop. 40,000) for Archer's entire life, he's grown up with the same group of kids, who are used to his idiosyncrasies and genuinely seem to like him. But he doesn't have "friends," per se — at least not the kind who invite him over to hang out. He's never seemed to care much about this, because he gets along so well with my wife and me, and with his younger sister. But as he gets older, he's going to need non-family members that he can talk to and rely on, to enrich his life and to serve as another safety net.
Parenting spectrum kids vs. "the neurotypical"
Parents of what people in the autistic community call "neurotypical" children might not see anything all that unusual in the list above, since just about everyone with kids starts to feel a mounting sense of helplessness during the teenage years.
Early on — especially during the age of tantrums and expensive child care — childhood seems to stretch on interminably, and parents may even daydream about becoming empty nesters. But when that day actually draws closer, a kind of panic sets in, similar to what Patricia Arquette's character in the movie Boyhood feels as she cries in her tiny divorcée's apartment and tells her 18-year-old son, "I just thought there would be more."
One of the great misconceptions about raising a son or daughter on the spectrum is that it's fundamentally unlike raising any other child. The heightened public awareness of autism — and the inclusion of autism spectrum disorder characters on TV and in movies — means that the broader stereotypes are breaking down some. But many people still picture the autistic as emotionless and uncommunicative, and imagine that for their mothers and fathers it must be like their ordinary offspring have been replaced by aliens.
In truth, while there are unique challenges to parenting the autistic — like after-school therapies instead of dance classes or Little League — the bonds and the worries aren't too far outside any other parents' experience. We calm them when they're upset. We learn to manage their quirks, and their likes and dislikes. We hope their classmates aren't mean to them. And we feel guilty that we're not doing enough to prepare them for the world.
The difference is that the neurotypical adapt a lot easier, especially as adults. They may struggle through freshman year of college, or live in their family's basement after graduation until they get on their feet financially, but they can also talk to their peers, and can watch and understand people like themselves on TV and in movies. Through all the little tips and cues they pick up, they figure out how to be grown.
Not everybody has that knack. When I was younger, I and nearly everybody I knew had at least one relative who still lived with his or her parents well into middle age. Looking back, a lot of these "eccentric" uncles, aunts, and cousins were probably undiagnosed autists and Aspies, whose conditions weren't severe enough for them to be institutionalized, even though they couldn't have handled living on their own.
In 2014, the Centers for Disease Control reported that 1 in 68 children had an autistic spectrum disorder, up from 1 in 88 in 2012 — a 30 percent increase. Already, elementary schools and high schools are dealing with the surge in autism spectrum disorder students, who by law have to be granted certain accommodations. Once they're 18 and out of the educational system, what happens? Are we headed toward a boom of 44-year-old uncles who still live with their moms?
Archer's a smart kid, who's come a long way. He can learn to look after himself, if pushed.
I enjoy my son's company, and in a way it'd be easier on my emotional health if he never left home. If he graduates high school, goes to a local college, and gets a job I can drive him to, then I can make sure he's taken care of, at least until my wife and I die.
But we'd be shirking our parental responsibilities, which wouldn't be fair to him. Archer's a smart kid, who's come a long way since he was a nonspeaking 2-year-old, spending hours lining up his Matchbox cars on the kitchen floor so he could carefully spin each one. He can learn to look after himself, if pushed.
So this summer, we'll have that talk about how and where he should pace. Then he'll learn how to make a sandwich. And on down the list we'll go, one step after another, until he's walking straight out the door.
Noel Murray is a freelance writer living in Arkansas with his wife and two kids. His articles about film, TV, music, and comics appear regularly in The A.V. Club, Rolling Stone, and The Los Angeles Times.
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