My Autistic Child Might Know More About What’s Important and How to Live Than I Do
My son, now an adult, has decided it’s high time that the world — and his parents — understands that the autistic mind can be legitimate on its own terms. He feels he’s been put in a box of disability, and he’s punching his way out.
My son Sam is on the autism spectrum, with Asperger’s. He now sees that as a gift, and Sam is becoming the focal point of how my view both of him and of things beyond him is changing, from what is wrong with him to what is right. From a static view of what’s what to … well, I don’t know what. Not entirely. But for me, something is changing.
Things with Sam reached a head a year or so ago, when he brought me into a therapy session to air some complaints, which wasn’t a complete surprise — Sam had been drawing away from my wife, Karen, and me for some time. In therapy, he reached way back with his grievances: that when he was a boy, I was removed, too often caught up in work even when I was with him. That I wasn’t there for him, not fully, distracted as I was. Culminating in what, for Sam, was the big problem: I certainly wasn’t seeing him for who he really is. It was not, to say the least, an easy hour of therapy.
It seems, in many ways, that Sam is doing well. He’s 32, married, with a four-year-old son and another born in November. He’s a college graduate and gainfully employed. But his mission, now, is almost a matter of rights, to prove a point, to flatten a question: Why do you neurotypical people think you have all the answers? He simply has a different purchase on what’s important, one that’s quite legitimate.
Though it can be hard, from my end.
Sam was diagnosed as a teenager with Asperger’s, which was on the high-functioning end of the autism spectrum. (Technically, Asperger’s is no longer a diagnosis; its symptoms now fall under the broader “autism spectrum disorder.”) The world comes at him in a particular way, with some things glowing and others missing. For example: When Sam had his first apartment after college, I used to take him grocery shopping. As both of us carry bags to his front door, perhaps he’s taking a dive into why the Sixers’ Allen Iverson has been so good — he’s fearless on the court. Sam loves sports, as I do. Then, at his door, I stop. So does he. I’ve already nodded my agreement on Iverson, who had a tough upbringing, adding that the court was the place where he had control. Now, Sam is making no move to open his door, though the key is in his pocket. A thousand times, I’ve said some version of this to him: “Sam, open the door.”
As a young boy, he didn’t have friends. He got bullied. He subsisted largely on chicken nuggets. He was an eager athlete, but awkward. But always, Sam has been about overcoming, and he would make surprising leaps.
And there are gifts. Not, for Sam, the brilliance we sometimes associate with Asperger’s. But here’s something he wrote when he was a teaching assistant at a school for kids on the spectrum, about consoling a crying boy scared about his future:
The boy said, “Who would hire me? I am autistic. I am too retarded to work — I can’t even tie my shoes.”
I sat down next to him and whispered, “I will let you know a little secret. I am autistic too.”
Through red-soaked eyes he looked at me in disbelief. “But Mr. Sam, you look and talk like a normal person. How can you be like me?”
“I am exactly like you. I just learned to play to the strengths that my autism has given me.”
The student asked, “How could being autistic help you?”
“It gave me the ability to understand you.”
But Sam is angry now. He’s decided it’s high time the workaday world — and his parents — understands that the autistic mind can be legitimate on its own terms. He feels he’s been put in a box of disability, and he’s punching his way out. He’s demanding that we get him. Which isn’t, of course, unique to Sam, or to people on the spectrum; neurodiverse people of various stripes are coming to the fore, demanding their agency.
The causes of autism, or even precisely what it is, are still mysteries, and the most intriguing thing I find in digging around online is the observation that what the autistic mind senses is always surprising. Meaning new. For Sam, deciphering what he should pay attention to and what is best ignored in any situation — the way most of us are able to assess what’s before us and file that away for next time — is an ongoing adventure.
Take teaching him to drive, for example. We began when he was 22, practicing in a parking lot, with Sam simply turning slowly, in ovals. One night, maybe lesson five or so, he started driving from the parking lot onto a lawn and was headed toward a tree as I yelled for him to stop. He did. Later, Sam explained what was happening for him, why he took the detour off the parking lot: “The best way to describe it, there’s no filter. A pretty tree and operating a car are one continuous perception, like I’m improvising when there’s a script I should follow instead.”
The world, alive and confusing, is always coming at him, it seems, with no immediate hierarchy of what’s important and what’s not. He’s had to find his own system of sense. Sam’s driving in the parking lot improved, and we hit the road. He was doing fine. But one night, on a narrow section of Germantown Avenue, he drifted close to parked cars on my side, to the point where I reached over to the steering wheel to fix our position. This happened several times. I got frustrated, he got angry, until I asked him just what he was doing.
“Staying inside the line.”
I realized that I had told him, probably several times, that he had to stay inside the double-yellow center line, and that was his focus — no, his definition of what he had to do. It’s the corollary of seeing too much: Now, seeking an exact place to position my Subaru, he was seeing too little, zeroing in on that center line, staying inside it a few feet, never mind that this put him too close to parked cars on narrow Germantown Avenue. Those cars didn’t matter, since he wasn’t looking that way. They didn’t exist.
No wonder driving and any number of things can be so hard for somebody on the spectrum. (Sam still doesn’t have a driver’s license, having flunked five times, usually because he hits the cones when he tries to parallel park.) And exhausting for him, in the sense that he would leap to exactly what he was told to do — by me, by his mother, by everyone — only to find out that “stay inside the yellow line” wasn’t the answer, either. At least, not the way he took it.
When Sam was a teenager, a psychologist who spent some time with him said he would catch up, that he was behind but would be able to effectively negotiate his path in due time. That, for me, was powerful. I got the bright idea — and I used to trot this out to Sam regularly — that his disability was merely a fact. It wasn’t good or bad; it was simply a part of him. If he could objectify it and not judge it, that would go a long way toward …
Toward what? Making me feel better?
The message to Sam — and indeed, one enforced by several tutors and schools and bosses — was: Come into this way of thinking, the standard building blocks of a successful life. To a large extent, he did. He followed us, his parents, in work. He initially got a job as a teacher’s aide at the school where his mother is an administrator, after getting his BA at Lebanon Valley College, in family studies. And he declared himself a writer.
He has been writing a blog online about autism and spent a couple years going around to local colleges, speaking about dealing with life on the spectrum (to good reviews): You can get there. I did. I made friends, and went to college, and got married, and now I’m a father. Not in spite of who I am. Because of it.
By most standards, Sam’s doing just fine. Most young men with his level of autism are living in their mothers’ basements, he says, after getting shoehorned into a straightforward path they were destined to fail at.
Getting up to speed in time-honored ways is one thing, however. Having that match how Sam really feels about himself — and who he really is — is another. The message he’s gotten all along has been about overcoming instead of going at things by his own lights. Or, as Sam puts it, “You’re not respecting people on the spectrum by treating us like a project.”
We didn’t run with the boy who was already there.
This all means that Sam is now chasing the most basic questions, point-blank: “Who am I? What do I really want?”
To get a purchase on that, let’s go back for a moment. Way back, to when I was young.
I remember standing next to my father at his lathe in his workshop, not a word being said as a candlestick for Mom — her Christmas present from me — spun in a knotty blur. I was nine years old.
The workshop had its own furnace, and it was warm in December. It’s where my father spent all his spare time, building things; in fact, he built the house I grew up in himself. I didn’t want my turn to come in working the cutter — I wanted him to go right on making the shower of walnut land in a furry pyramid on his wrist as he carved the candlestick, as he chewed his lip in silent concentration, a Salem sticking up from his hand like a crazy extra digit. This was as close as I could get to my father.
When Sam and his younger brother, Nick, were small, my mother told me how obvious it was that I wanted something different with them. I wanted something much more direct than what I got from my father: I held my sons; I told them I loved them. And I talked to them.
For Sam, problems in school emerged early. His first-grade teacher said he had trouble focusing — that he’d be looking around while she was trying to teach the class. By seven, he was going to a private Friends school; he’d been diagnosed with ADD and needed smaller classrooms and a curriculum more tailored to him.
But we certainly had fun, Sam and I, going to baseball games early and often. This is where we first met in consciousness. Baseball was my escape as a boy — something I found on my own, something about names attached to numbers, those numbers allowing me to dream about the wonderful player who was therefore a wonderful guy. Sam says one of his first memories of me showing emotion he could understand was when I booed young Dutch Daulton, the Phillies catcher, who at that point in his career couldn’t hit and wasn’t so wonderful. (Mere conversation, what I had desperately craved from my father, didn’t quite cut it for Sam.)
When Sam was nine and Nick five, in 1998, we went to a Cardinals game early to watch batting practice. Mark McGwire was hitting home runs at a record pace, in a race with Sammy Sosa of the Cubs to smash Roger Maris’s home-run record, and steroids were the last thing we connected to the chase. Or even knew anything about.
Baseball was an alternative reality. Nick, too, would become a multi-sport fan — somebody who always seems to win office football bets — but for Sam, as they had been for me, sports were sustenance. The food of life. They were, while we were watching, all that mattered. If I could let loose — if I could marvel at the McGwire/Sosa home-run chase — he could, too. Sam was a natural in an arena where the good guys win, and the purity and ferocity of his need and attachment were marvelous.
A year or so after the home-run record was broken, a friend of mine drove Sam to school one day, and they started talking baseball, which meant home runs — Sam was a big Sosa fan at that point — and my friend tested him: “You know he took steroids, don’t you? You know he cheated, right?” Sam was so upset that he got out of the car and trudged off into school without bothering to shut his door. It was worse than a suddenly compromised hero. What to believe in had begun to get tricky.
And, even worse, what to believe about himself. Sam talks now about how certain things are imprinted, the pain still real. How, for example, we pulled him from playing baseball as he began to get teased for his awkwardness and lack of focus. How glass Snapple bottles were thrown at him on the school bus. How he got whacked by bullies at the sensitive Friends school. His mother and I knew nothing about those last two until much later. But this, at the same Friends school, I’ll never forget:
His teacher called us. She was not quite reaching Sam. She suggested a child-study-team evaluation. That meant a psychologist, two reading specialists, and a placement-test giver would pick his brain.
Karen and I — the boys home with a babysitter — were kept waiting half an hour for the meeting with the team. Then a door swung open, and there they were — along with Sam’s teacher and the principal — neatly arranged around a long rectangular table, all eyes on us. The experts took turns. We learned that Sam might have an auditory problem, that he was anxious, that he didn’t read very well, that his short-term memory was lousy. They suggested an evaluation by a neurologist.
Now we were on a rigorous path, one that, Sam points out today, ignored what he was feeling, especially his pain. We hired tutors. Sam would end up going to various schools. He had a great deal of support to keep him on the narrow road generally accepted — or demanded — as success: college, a decent job.
I needed something, too.
“I just blindly obeyed you,” Sam tells me. “And what’s going on with my life is that I’m still trying to climb out of that hole and learn to do things for myself.”
Early on with Sam, I on the couch with my legal pads and pencils as he lay upside down in an armchair, thrusting Batman in the air, I could stay in my own dreamland for hours at a time. “I was always trying to figure out what you were thinking,” Sam says now. “I was always trying to read what was going on with you.”
What happened to the adamantly present father I was determined to be?
Well, as it turned out, I wasn’t so different from my work-obsessed father, even as I thought I was going off in a radical new direction.
When I moved to California 40 years ago to seek fame and fortune, the first apartment Karen and I shared was quite small, though it had a walk-in closet that I took over. I built a small table in there to use as a desk, cut a hole in the door the size of a volleyball where I installed a fan, knocked a hole in the wall near the baseboard to draw in air, and spent hour after hour sitting in there, smoking Salems — Dad’s brand — and scribbling on legal pads, the fan sucking smoke in a steady stream out into the living room, where Karen lay on the couch, reading.
It was my stake in the ground for who I was going to be. Hole up and work. Make something. And by the time Sam ran into serious trouble at school, that train had been boiling along for quite a while.
This is what I wrote more than two decades ago, the night after that study-team meeting at the Friends school, after I’d spent a day escaping into work:
Part of me itches to leap back, dig into my own history, understand what’s wrong with me so that I can cure my runaway workaholism. Instead, I draw an introspective line in the sand: I love Sam. I dove into work today because I was afraid — afraid that my faith in him wouldn’t hold.
But I know — winning the battle with myself — that it will. And that untouchable feeling for him justifies me; I need to work. That’s how I create myself. And my son is fine, too; all those nay-saying experts can take a fucking leap. Because I know how I feel about Sam.
There were a couple of messages in there, including one Sam had certainly been getting as he watched me: Work! Make something! That’s how you become whoever you might be.
But you can’t have it both ways. I was more present with my sons than my father had been with me. Yet it wasn’t enough, not for Sam. Especially not when push came to shove with his autism.
“I don’t think you were seeing me for what I was,” he says. When, that is, I wasn’t staring off into the middle distance of whatever I was writing. The thing I seemingly always had to get back to.
The second message, then, is one for me, made stronger by something Sam told me in that therapy session a year ago, when he laid out his grievances: “I didn’t think you wanted to be with us.”
I take some comfort here: I had a little workbench in a corner of my father’s workshop. I never felt at home there, and I rarely used it. I stayed inside instead, watching Knicks games on winter nights. (They were good then.) I couldn’t stand the silence of my father.
But I understand him better now. We come to ourselves in whatever way we can, in whatever way we must. And if I can forgive my father for never opening up to me, for never sharing his inner weather, I can see this: In his workshop, alone, building something — that’s where he needed to be.
Early in Sam’s relationship with his wife, Gisette, seven or eight years ago, she was interested in a commitment, and the message from Karen and me was: You need to be careful, Sam, not too fast, even as we liked her from the get-go. She is smart and funny and clearly cared about him. But we wanted Sam to be cautious. So he was conflicted — not about Gisette, but in how to proceed.
“I took your advice literally,” he says — that he shouldn’t rush into anything. That men are men, and men “like to window-shop; there are other women out there.” In fact, he wasn’t chasing other women, but he was frozen by the idea that he should proceed slowly “when all I wanted was just to focus on her. And I realized the further away I got from what I wanted, the harder my relationship with her became. It caused a lot of mayhem. And when I tried to be more authentic to myself, things got better.”
Believing in a world his parents presented to him — his place in it — was a mind-set Sam had to get out of, in any number of ways, he says: “I just blindly obeyed you. And what’s going on with my life is that I’m still trying to climb out of that hole and learn to do things for myself.” He was always sure that someone else would give him the answers and pick up the pieces of whatever he dropped — the fallout of too much direction.
This can seem, to Karen and me, overblown. Sam has a life, certainly one apart from us. We don’t think we dictate how to live, or even give much advice any longer. But that’s missing the point. The point is how Sam feels.
A couple years ago, just as spring was settling in, we rented a house in the Poconos for a long weekend. Nick and Shawn — then a couple, now married — came, as did Gisette and Sam and their son Sky, who was almost three. The weather did us a favor — no rain, and not a lot of sun but warm enough that we could sit out and enjoy Lake Harmony. It was too cold to swim, except for Sam; he has a high tolerance for cold water. He beckoned Sky to go in with him, to jump off the dock into his arms.
Too cold. But Sky was amused, as if he knew what was coming, and he let Sam — in waist-high water — pick him up from the dock, and cradle him in his arms, and … slowly walk into water that … slowly got deeper, almost, it seemed, inch by inch; as I watched, I imagined Sam’s feet on the rocky bottom tiptoeing out, Sky’s laugh getting louder and fake-panicky as his father brought him down into — “AAAAAH!”
Both of them were laughing now, as water dripped off Sky’s butt and legs, as Sam held him out of the water and walked him back to the dock. Sky ran toward the rest of us for a moment but then — of course! — turned back to the end of the dock, where Sam, waiting, held out his arms. Sky considered. Then he let himself be picked up. …
I share this not because it’s remarkable, but for the opposite reason — it’s ordinary. Though not really for that reason, either. I share it because Sam and Sky played that game, in and out of the water — or in Sky’s case, almost in the water — for maybe an hour and a half. (I’m sure Sam was freezing.) What touched me, what seemed to be kind of remarkable, was how Sam didn’t have a moment of saying, or intimating, or as far as I could tell feeling, Okay, enough, Sky, time for me to come out. To dry off, get dressed, get warm by the fire. It wasn’t that Sam didn’t have other things to do. The better thing to do was this, the game he was playing with his son.
“Oh, I remember being cold in the lake,” Sam says now. “But the moment was too good to stop.” Something else: “It taught me the power of being in the moment with Sky rather than trying to read his face.” For Sam, as for many autistic people, reading others, especially their facial cues, can be hard. He needs other, more direct methods. The more hands-on, the better. And what, for Sky, could have been sweeter than that?
The man who for as long as I’d known him had so much trouble paying attention had turned that on its head to give his utter focus to that moment, in his own way.
It’s Sam’s own stake in the ground, of how to be a father. Which is the bottom line of his adamancy: “Autism isn’t a problem. It’s a perspective.”
We’ve been working on a book about all this, Sam and me — the father-son view of his growing up on the spectrum. As a writer, he has the juice, though not the technical skills; he can build the engine but not throttle it down or keep it on course (though — ahem — he could learn to do that). But he’s too busy now to work on the book, since his second son, Isaac, was born in November.
I recently asked Sam: When things settle down with Izzy, when he sleeps through the night, say, can we get back to our book?
“When Sky was a baby,” he says, “I would come home, spend a little time with Gisette, and then go upstairs to work on projects to help other people like me. And I missed out on so much with Sky when he was a baby.”
Sam’s on a mission now. He’ll stick with being a husband and a father, with having a good-enough job working at a Malvern company that expedites drug development (Sam runs their fancy dishwashers that sterilize lab equipment), and zero in on the thing he feels he was given no path to, at least not on his own terms: Who am I? What do I really want? If he finds the time, he’ll post online whatever answers he discovers.
It is, in a sense, the most direct thing there could be: “I’m really looking to simplify my life and get myself together for me so I can be there for my wife and children.”
Who am I? What do I want? Of course, we’re all working on answers to those questions in our own ways, and I worry that Sam has cut himself loose, no longer looking for an answer through what he does, what he produces. When Nick was born — when I had two young sons — I got up at 4:30 in the morning, not to change his diaper, but to work, as if I was doubling down on just who I was. But as I write that, I can imagine Sam’s reaction:
Stop, that is, trying to pull him down some path that isn’t for him.
It’s as if Sam has decided to create himself from whole cloth, paring back to see himself exactly as he is. He’s a man of faith, but that’s not the driving point. Following his own heart and mind is, and nothing, not the standard way to success, not his parents, not even Gisette, can tell him where he needs to go. He’s cut the cord. It’s the song of our time, the demand to be given the room to become yourself. And it’s a phenomenal challenge, especially given that Sam doesn’t know where it will take him.
Meanwhile, in writing about his autism, Sam also slips in some poetry, often about Gisette. A snippet from a poem he posted on Facebook not long ago:
Love is a puppet who cut his own strings,
Sewed together his own wings,
This day he sings,
Let’s see what love brings.
Our book can wait, Sam. It’s my job, now, to let you fly — maybe the hardest step of being a father. (Yes, I know, you’re not giving me a choice.) Most of us try to do better for our children than we believe we got ourselves, but in the end, we have to release them to find themselves in their own ways. And my hope, from where I sit, is that Sam will take the next step for Sky and Isaac — that staying close to them is part and parcel of what he needs to discover in himself. That path would be a victory for everyone, including me. Which means there is only one remaining piece of advice:
You go, Sam.
See more of Sam’s journey on his Instagram account @huberfamilyadventure
Published as “The Son Also Rises” in the March 2022 issue of Philadelphia magazine.