An Autism Mom's Long View of Inclusion and Difference

All of my maternal life (almost 32 years as a mom) I have been aware of the concept of inclusion. My sons have been the catalyst for my fervor on the subject. Nothing like having children to make you see life as it truly can be, "red in tooth and claw" as the poet Tennyson said. It’s bloody out there in the world at large. For all of us but especially for unusual people. When Tennyson wrote that, did he have atypical kids? Because in many ways red in tooth and claw describes me as a mom: a hawk, well-bloodied from the fight, with a proud, prominent beak, muscular body, and feathers easily ruffled.)

Inclusion is not just an issue for Nat, whose autism has put that topic front and center for me. I have been roused to the fight for inclusion of my other two, younger, sons as well, who are neurotypical—though not at all typical. In the middle school years, I despaired about Max’s reluctance to join in with sports, particularly in those tender middle school years when everybody had to be running somewhere with a ball in the air. Not my Max. He was the tall guy walking down the center of the soccer field, while his teammates ran and jumped and butted their heads together. I have to admit that I hated the closed club of boys in team sports because of Max and Ben, not Nat. Max solved these challenges by labeling himself a Floater, neither belonging to the sports lunch table, the drama boys table, or the "geek" boys table. He would smile his dreamy smile and float along, head and shoulders above it all. He was happiest with a Lego movie camera in his hand.

Oh, how I worried. Should I force him to try harder to be a bit like the rest of them? Should I interfere and set up playdates for him? But no, he would just smile and he wouldn’t really have to even say much, his refusal was as hard as steel. By the time he was in 8th grade, he had figured it out; he was simply Max, and just about everyone loved him. He ultimately went to film school. He is now, at 29, the coolest person in Brooklyn.

Things were not as straightforward for my youngest son, Ben. Ben categorically refused to play in any reindeer games. He didn’t smile about it, either. He always had full critiques on why that life was not for him. Well, not as a three-year-old when he would just sit in my lap like a hard walnut, and watch those kids in boys’ dance class or soccer. Not gonna happen. And it did not.

Again, I worried. Was he sad? Angry? What was it? Why was he alone a lot? The answer was staring me in the face, all around me—Ben’s beautiful, brilliant, heartbreaking art. The energy to create like that was being channeled right through him, onto paper, and later, digital tablet. In high school, he was not only an artsy kid, he was, in a way, art himself. He created himself, worked on himself, daily. He wore layers of forest-colored clothes, an expression of his affinity for elves and nature. (At 24, he still does, but not the elf part.). No hip-hop for him; instead, he listened to music that sounded like water droplets on mushrooms. Ben had so much going on in his head that at three he once shouted out, “What’s in my head, what’s in my head?” as if his own thoughts were too much for him. Eventually he mastered his devils and embraced them, actually, becoming a serious artist at a serious art school, and now he works as an illustrator for an exciting, edgy pop-up card company.

My oldest, Nat, was not included very much—if any—with his non-autistic peers, ever. For most of his school years, he attended special, private autism school programs rather than the neighborhood school. Our local principal seemed reluctant—almost terrified—to make that happen because, as she put it, he would be treated horribly by other kids. So much for a school system that prides itself on its diversity. I’m not bitter (not much, anyway); I was elected to the School Board and helped raise awareness that led to changes in our school system’s special education.

There were also no welcoming, inclusive afterschool community art classes for Nat until he was 25. We pieced together solitary music lessons. We found quality music instruction for him when he was in his late twenties. We got him into Special Olympics rather than elitist school sports—we had to; there was nothing for him in my town. Special camps, with other disabled kids. Things are different now, there are so many autism programs now, so many supports for guys like Nat these days. But back then in the 1990s and early 2000s, it was slim pickings. And that hurt.

As Nat and his brothers have shown me over time, being included in the typical ways might be overrated. The reality might be that you hang with whomever walks along with you. And so, eventually it occurred to me that any social activity was an inclusive activity: If other people are a part of it, disabled or not, that is inclusion. If your peeps are all autistic and special needs, why doesn’t that count? The implication feels to me like a systemic discrimination, where the disabled kids are not the desirable role models. Nat has almost always hung out with autistic guys, or other special needs kids. Does he care? Wasn’t he smiling at their birthday parties?

Why does it have to be “typical” peers—for any of my sons? Haven’t they all shown me, each one, over and over again, that it’s okay to be different? It’s okay to be alone. It’s okay to be an odd duck, a black sheep, a lone wolf. If so, however, it’s probably best to have a mother who’s a hawk, a tiger, or a bear, and can pounce on the predatorial and discriminatory systems in this world.