Learning From Disability: One Parent’s Version

A Personal Perspective: My autistic son is my greatest teacher.

Reviewed by Michelle Quirk

I brooded with premonitions. Small in stature but bulging pregnantly on a walk through the woods, I had the horrible thought: “What if something is wrong with him?” He was my fourth child. I’d worried with the others, but they all turned out “fine.” I told myself to let it go.

The night of his birth, he had what could only be described as a meltdown. He screamed, truly screamed, without surcease. I could not calm him. Dark, smoky panic welled inside me. Exhausted, he finally conked out.

The next day, my parents arrived. I was an older mother—three weeks shy of 46. Suddenly I looked at my mom, terrified.

“What’s wrong?!” she asked, alarm on her face.

“I just realized…” I searched for words. “This parenting thing… doesn’t end when they turn 18. Does it?”

She laughed—there I was, two-and-a-half times that old and she’d flown in to be with me, her youngest. “No, it certainly doesn’t,” she managed, suppressing her grin. But it wasn’t funny.

Ed smiled late, didn’t point, lacked eye contact. All the things. Still, the pediatrician dismissed my concerns with, “He’ll probably be fine,” and I couldn’t get him diagnosed until he was almost two. And then, by a well-meaning speech therapist who was, I’m sure, appalled he hadn’t been diagnosed before. She wasn’t supposed to offer diagnoses herself. She did so with her back turned, gazing at her desk.

I grew depressed, devastated. College psychology films of young children in shadowy rooms, banging heads against walls, reeled through my brain. I knew better, I was a psychiatric nurse practitioner, but it felt dark, isolating, alone.

Years stuttered by. Grindingly hard years. Changing schools, finding therapists, autism experts. Ed biting and kicking, melting down when he couldn’t express normal frustration. Anxiety ruling my pulse when sitting with patients (or anywhere, really), seeing a call come in from the school. Suspensions. IEP meetings. Ed wandering off from school or home and no one knowing where he’d gone. The panicked, cortisol-driven, never-ending worries. What had become of my life? How could I even have a life?

And there was more: Divorces, single parenting; ultimately realizing that, under 5 feet, I couldn’t deal with my now-14-year-old’s even occasional physical violence and aggression. He was much bigger than I, the sole parent. His older brother couldn’t intervene but couldn’t bear to simply stand by, torn and traumatized. I wrote about the gut-punch choice to move Ed to a group home, where he still lives and thrives.¹ One of the fiercest, hardest, but rightest decisions I’ve ever made.

A few years later, we FaceTime every night, get together at least once a week, eat, watch a show, do puzzles, love on each other, then he asks to “go home.”

I never would have learned a fraction of these life lessons without Ed, and although it may be cliché, I would not trade it. Ever. Just a few of his gifts:

The great parenting lesson that you have no control came early on, when Ed was diagnosed. We rear toddlers expecting them to go to school, to college or work, find a partner—all the milestones spooling out one by one. But we have no idea what realities will befall them. Neurotypical or not, good parenting does not deliver problem-free children—nothing does. Ed taught me early and often: I can do my part to support and help, but I have no idea how his path will ultimately unfold. I let go the illusion of control. What a relief.

Lower expectations, but not too much. Over-expecting is known to disappoint in any relationship. Ed was so smart—teaching himself to read via subtitles at age 4; now reciting phrases in Finnish, Slovakian, Turkish (and other languages) he’s learned the same way. Figuring two-digit multiplication in his head. Yet holding his end of a conversation after “How are you?”—infinitely harder. And classic for the spectrum.

I didn’t hold expectations for chores or behavior I’d had for his older siblings. But Ed wasn’t off the hook, either: Putting laundry in the basket or folding and putting away. Making and buttering toast, collecting lunch items, putting away groceries or dishes, cleaning up his room. Expecting full days at school well-regulated, without breaking down or lashing out. He rises to expectations if set within his grasp. And he feels the pride and joy of any other kid. I do, too.

I was a bitch, but now I’m compassionate. OK, maybe that’s an exaggeration. But if you see Ed in public, you might see a “normal” 18-year-old. If he doesn’t speak, that is. When he opens his mouth, his diction is rigid, or he’ll recite movie scripts. He’s obviously neurodivergent. But you might judge him as rude, oblivious, or downright mean. Instead, he’s one of the most affectionate and loving people you’ll ever know. Now, with anyone annoying in real life, I know I don’t know what’s going on with them or what made them less than lovely that day. Because of Ed, I’m much more likely to give them a pass.

I have a sacred chance to educate. Early on, a close but clueless friend said, “It’s your job to educate us” (all about autism). Excuse me? Besides the fact I that was too exhausted, as with any marginalized population, that was not my problem or my duty. I stayed away from that friend for a while.

But in a grocery store, when Ed was younger and inadvertently touched a customer on the tush, she turned and yelled at him. I spat out, as nicely as I could (not so nicely, perhaps?), “He has autism!” She stopped, apologizing profusely. I felt bad for her; she was so mortified. Same with a man in a wheelchair at the airport who kept telling Ed, louder and louder, to “Move it!” (I was turned away, attending to an older child.) “Sorry. He is autistic,” I turned back, firm but smiling. The man softened. “Oh, I didn’t know!” he insisted, apologizing. These people have thought about those encounters since then, I just know it. And learned.

“Inclusivity” is not just a word. It’s an attitude, and a revolution, and I’m all in. The progress of diversity and inclusivity starts at home. It used to be so easy to feel privileged, to believe in meritocracy: If they just tried harder, they could… (do whatever)! Not anymore. I know the meaning—the feeling—of equity. We are each challenged in some way(s); we all are “temporarily-abled.” But we don’t all realize this. Some of us, sadly, still believe we deserve a place before someone else. Sometimes, that used to be me. Because of Ed, it rarely is.

It's been one of the deepest challenges of my life to mother Ed and, at the beginning, I didn’t know if I’d make it alive, unbroken. Let’s just say Ed has been exceptionally patient. He has lovingly, expertly, broken me in. I love him ineffably. He is a gift.