My Life As A Reluctant Outlier

As the daughter of a gay man in the 1970s and ’80s I learned how to pass early in my life. I observed that, by behaving in certain ways and omitting certain details of my home life from casual conversation with kids and their parents, they might think I was like them. That I came from a respectable home, with a respectable mother and father, instead of the messy apartment of a pot-smoking gay poet dad. My father even indoctrinated me early, asking me not to mention his boyfriends to my grandparents. I knew then that uttering the wrong thing could disrupt tidy and polite worlds.

My father came out before I was born after years of struggling with his sexuality. Naturally, he had no interest in going back into the closet to satisfy my desire to pass among my classmates at the private school where he sent me in first grade. I compartmentalized, believing that I could pretend to inhabit different selves and different lives. Which meant that I could be out with my dad and his circle, and in the closet with everyone else. I did eventually come out, but did so in my own time, just as my dad did when he was ready.

When my son was diagnosed with autism and persistent developmental delays, I was again faced with the dilemma of belonging to an outlier community I didn’t really choose. But this time I didn’t have the luxury of passing, or planning to come out when I felt ready. I couldn’t hide behind my ignorance and immaturity. I was Finn’s parent, his mother, the one supposedly “in control,” the one who should love him more than anyone else. But almost immediately I felt my old self slipping. Suddenly I was a “special needs mom” and ours was a “special needs family.” I hated the appellation. To take it on I felt like losing some aspect of my individuality. “We are not a special needs family,” I told my husband angrily. I was not ready. I didn’t ever want to be ready.

When Finn was a baby, and then a toddler, it was pretty easy to pass. Few toddlers can speak. Tantrums are typical. And small children develop at such different rates. Still, Finn stood out from other babies in that he rarely made eye contact with curious strangers and friendly checkout clerks. I dreaded their smiles and questions. Though I could usually explain his antisocial behavior with: “He’s just tired,” or “He’s not feeling well today,” inside I burned with sadness and something like shame. I so wanted the smiley child whom everyone coos over. And I felt there was something wrong with me for being disappointed that my son was simply himself and not the happy baby everyone expects.

Annabel, at 4, believed he might grow out of his muteness and antisocial behavior. She was too young to understand the concept of disability, let alone autism. “When Finn is 3, he’ll talk,” she told me, decisively. Three was still an age she could remember being herself. And she remembered that at 3 she could talk. This made perfect sense to her.

After consultations with doctors and other experts, I learned that Finn might never talk, that he might always be mentally delayed. But she didn’t need to know this. I took comfort in her vision of his future. But as he grew—and he grew tall pretty quickly— it became clear that Finn was not like other kids. He was lacking, not only speech, but also receptive language. He was unable to stay seated at the dinner table for the duration of any meal. He’d run into store display windows when I dared try to shop while also caring for him. Small children run free and everyone smiles. But a 5-, 6-, and 7-year-old? A kid should know better. His “bad behavior” attracts stares and tut-tuts. Add to this picture Finn’s moaning, his trying to bite my arm, his violently pulling at my dress when I try to move him away from the restaurant kitchen.

Finn’s brand of otherness became more pronounced for me each time I returned from a solo work trip. It was only in these moments that I could see him with fresh eyes, as others might see him, and in these moments two versions of myself would collide. There’s the “me” that sees his guttural moans and jerky movements as representative of an “other”—the way I used to feel as a girl seeing someone with mental delays on the bus or pushing a broom at a McDonald’s. I recall my initial curiosity, the quick sizing up trying to label this person, to put their behavior and presentation into a context: Down’s Syndrome? Deaf? Then to find the appropriate response. This younger me would be scared, sometimes embarrassed when encountering people with severe mental issues or birth defects: the guy working at the CVS with the face too skinny, the eyes too close or too far apart. This feeling would be later replaced by pity. I didn’t yet know enough to feel compassion.

Then there’s the other me, the me that sees not a “retarded” boy but my lovely beautiful Finn, with the soft skin and mop of wavy brown hair; the me that loves how he presses his face into my stomach or kneads my belly with his hands. This way he has of expressing affection without being able to say “I love you” is unlike any other. But it means so much to me because it’s uniquely his. I am hopelessly in love with this otherness of his. My husband knows and loves this Finn. My daughter knows and loves this Finn. Finn’s therapists, teachers, and caretakers—they all know and often fall for this boy. But to many, including some of my closest friends, he’s still awkwardly “other.” One friend has spent weekends in our house and has yet to try to engage him. She steers clear of my son the way a non-dog person avoids a friend’s slobbery dog.

When Finn was first diagnosed with autism at 15 months, my husband and I were devastated. We confided in few friends and I remember distinctly at least two of them calling us “lucky,” and weren’t we relieved that he was diagnosed with autism and not mental retardation. The popular understanding of autism then still carried the possibility of the emotionally complicated genius. One friend even said, maybe he’ll be like “Rain Man.”

I bring this up because in the realm of disabilities, mental disabilities—being mute and delayed (what used to be called dumb and retarded), as my son technically is—seems to carry a greater stigma than physical disabilities. People feel more comfortable with disabilities when they’re redeemed by relatability, or if not by relatability, than by superior intelligence or hidden talents—when that deaf, dumb, and blind kid “sure plays a mean pinball” or when My Left Foot (the Oscar-winning story of Irishman Terry Kristy) creates beautiful pictures and writes books, when Stephen Hawking is a brilliant researcher and Temple Grandin fills lecture halls and is played by Claire Danes on cable TV.

But what of the mentally disabled who are simply delayed, without the hidden genius, who may be unable to express sympathy or regret, who without words might bite, hit, or scratch to get the attention they seek? Who, like my son, still in diapers at almost 7 years old, have to be zipped backwards into footie pajamas, lest they get into his dirty diapers and shred them to bits around the room? Who, left alone outside, might eat dirt till their mouths are black? It’s not easy to relate to someone who eats dirt. How does the community embrace these members? Is there not some knee-jerk social revulsion at work and, if not revulsion, then pity for the caretakers?

I sigh. And then I sigh again, because these are still painful emotions to tease out. To say, “this son is my son. I made him with my body.” He does not easily fit in, nor does he inspire you with his ability to “overcome” his inborn disability. Yet I love him profoundly, more and more each day.  And indeed I am proud of him, even if my modest hope is that he might one day bus tables in a restaurant or fold laundry in a hotel.

There was a time when, out with Finn, I’d dart my eyes about, eager to head off comments or stares, eager to explain Finn’s oddness or to engage him in a way that would make his behavior appear more typical. Now that he’s as tall as he is, as loud as he is, and his passing is an impossibility, I don’t seem to care so much. Or maybe I’m just used to him and used to myself as his mother. I’ve stopped looking at faces when I’m out in public with my son. Anyone’s discomfort with his behavior is not my problem because it’s a discomfort I no longer share.