Alysia Abbot: The Beauty of My Autistic Child

The Beauty of My Autistic Child by Alysia Abbott: Brain Child Magazine Nov. 8, 2015

1.  

Before I had children I didn’t think I would care very much about their looks, certainly not in any remarkable way. Doing so would reveal a gross degree of superficiality, a collusion with a society that already places too much emphasis on attractiveness. I believed that to cultivate the value of beauty in my little girl (my first born) would be to short-change her other virtues—the openness of her heart, the spark of her imagination, the steel determination to get what she wants when she wants it.

But something changed when I had my little boy. I know that every parent believes her child to be beautiful. Even the most unfortunate face is the face that only a mother could love. It’s clichéd. So please, take this statement with a grain of salt: My son, Finn, is beautiful.

With large green-speckled brown eyes and cupid-bow lips, soft wavy brown hair that manages to look good no matter how badly I cut it, with the velvety peach fuzz of his soft rounded shoulders, skin that is exquisitely, prohibitively soft, I cultivate, even fetishize his beauty. I praise his looks to his teachers and his babysitter all the time. I take picture after picture of him using every lens available in my iPhone arsenal, studying his face in different states of repose and concentration, sharing the best of these on social media.

I’ve embraced Finn’s beauty because it’s one of the few areas where he can truly thrive. He can’t catch a ball, or throw straight; he can’t draw a picture, or sing a song, say my name, or a write a word. I’m quite certain he’ll never be an academic or even a good conversationalist. If I walk him through the house, pulling him forward by the hand if I’m not carefully watching, he’ll knock his head against the door-jams like a pinball. A teacher once advised us to put him in a helmet. This undiagnosed visual processing disorder was just another complication in his already complicated diagnosis of autism and PDD-NOS (persistent development delay-no other symptom).

Without possessing the means or desire for the sort of communication that forms the basis of typical relationships, Finn may have to rely on his beauty to get the support he’ll need to thrive. I’m hoping his beauty will charm people, as it has charmed his caregivers and teachers. I want him to be protected from the bullies I imagine waiting in the shadows for this soft mute boy.

2.

How do you form a meaningful relationship with a boy like my son? I can’t relate with Finn intellectually. I can’t ask him how he’s doing. I can only learn about his interests incidentally. Watching him interact with toys and books and nature, I can tell you that he likes best digging his hands in dirt, throwing rocks into ponds and street drains, playing musical toys with the speaker pressed tightly against his right ear. If I fall and cry out, he’ll as likely laugh, just as he laughs at any emotion expressed with great intensity, including alarm and anger. He’s not yet shown a facility for compassion or generosity. Yet we—his mother, his father and sister—are incredibly attached to him.

In Finn, I’ve had to learn other ways of relating, of attaching and loving. And with Finn, that’s a physical relationship. Without the understanding that’s achieved through language there is only Finn’s predilection for touch, his extreme sensitivity. The way he slips his narrow fingers between mine, or curls his warm body into the crook of my arm, or wraps himself around my neck like a long mink stole when I’m sitting on the couch. In our relationship touch is everything.

This is how all of us bond with Finn. We lay with him. We breathe him in. We kiss his face. But there have also been times when I’ve bit him. Anything to get a reaction. Anything that would wake him up to my presence. I am here. I am your mother. I’m not like any another. Recognize me.

When I used to come home from a day of work and tried to seek him out, he’d pay me no mind. Distracted, focused on getting his food, or playing with the iPad he would, in these instances, see me only as a distraction, an intrusion into his world. If I was too assertive with my interruption he might try to bite or pinch me. Hard. But it’s me. I wanted to say. I am your mother. You love and miss ME. Hello!But recently, Finn’s been waking up.

3.

I’ve come home from a night and a day in NYC. I call out his name and when he enters my line of vision at the top of the stairs he jumps up like and down like a spring and flaps his arms with excitement. I greet him there, stooping so I can meet him at his level. He would rush over to my lap were it not for the therapist, who stops him. “Who do you want to see, Finn?” she asks. “You want mom?” She prompts him to sign mom: thumb on chin, palm open, fingers outstretched. He holds the sign and the therapist verbally confirms it’s intent. Mom.

He starts to move forward again and again he is stopped, “What do you want from mom?” She prompts him to fold his arms across his chest. “You want to hug mom?” He nods, holding the sign. “Ok, hug mom.” The therapist over enunciates each word, to make sure he understands their assigned meanings. Finn is hugging mom.

And at last he is released into my arms, free to join me for a quick embrace before being ushered back to the table to complete his work for the day. After the long build up, the hug is brief, too brief for me. So I scroll through all the other motions and signs I know he understands that will deliver me the proximity I long for after so many hours away. “Kiss,” I command and he moves his stiff lips to mine for a light peck then quickly pulls way. And I make a kiss sound: Mwah! One of the simple noises I know he can reciprocate. He makes the kiss sound. And I smile. It’s our special thing.

Then his therapist leads him to the table where he will work for the rest of the afternoon and he whimpers, starts to cry a heartbreaking cry. I want to say to the therapist, “It’s okay. He doesn’t need to work now right.” But I know I can’t get in the way. He didn’t used to be able to nod “yes” or “no,” let alone sign “mom” or “hug.” ABA, assisted behavioral analysis, is working for him. It’s how he learns best. Sign “mom” and you will see mom. Sign “drink” and you will have your drink. I’m a tool, a means for him to try harder to adapt to our typical ways of communication. And I’m glad to play the role.

4.

Today, I feel more accepting of Finn. I appreciate his beauty but I also appreciate him as an individual, not despite his peculiarities but because of them. That Finn-ness that is uniquely his, even coupled with his maladaptive autistic behaviors—the biting, the pinching and the hitting, the chewing of rubber-bands, and breaking of beloved things—is still him. And that touch. Jeff likes to say that though developmentally delayed Finn’s abilities to cuddle are freakishly advanced. “He’s a cuddling genius,” he says.

Finn’s sensory disorder, the amount of pleasure he derives from being tickled or having a stiff bristled brush run over his legs and feet is truly awe-inspiring. His expressions of pure glee, a squealing with a face stretched to a toothy grin, accompanied by a sort of thick purr are brilliant, a thing of beauty.

How could we ever trade these qualities for the temperament of another boy? This is a boy made to love. And we four are bound together by this love. Seeing in him a potential that has only grown. This is where he’s been. This is where he’s going. This is who he was. This is who he’s becoming.

Author’s Note: Since writing this essay Finn’s home therapy has been interrupted and his behavior has taken a turn for the worse. These days his touch more often used to communicate frustration (pinching, kicking) than it is to communicate love. But this is part of motherhood too, to absorb and to listen, and to find balance between the mountains and the valleys.

Alysia Abbott is a writer and the author of Fairyland, A Memoir of My Father (W.W. Norton, 2013). Her work has appeared in Vogue, TheAtlantic.com, Slate, Real Simple, TriQuarterly, and Psychology Today, among other publications. She lives with her husband and their children in Cambridge, Massachusetts. You can find her on twitter at @AlysiaAbbott.