Capturing Autism

I’m sitting in an observation booth watching my 3-year-old in his special needs nursery class and trying to understand why he refuses to participate, why he stands alone eight feet away from the snack table where his favorite snickerdoodle cookies are waiting. For my son, those eight feet of classroom linoleum might as well be a mountain range.

Dangerous terrain is nothing new for him, and every day, our family of three navigates it together. I like to think that my husband and I take the lead in this endeavor, but the truth is that my son, with his life-affirming belly laugh and his beautiful eyes, shows us the way. And we have resisted. Especially in the beginning, when it was all so dark and devastating. One visit to the pediatric neurologist and our lives were forever changed. He was supposed to tell us that we were anxious parents who worried too much, not that our son had autism. Autism? Our lovable, precious 18-month-old who admittedly had some delays was suddenly a stranger with deficits we couldn’t understand or make better. We couldn’t buy enough books and we couldn’t read them fast enough. And we were in too much pain to do much of anything. My husband has never been ashamed of crying when it’s appropriate, but never in our 15 year relationship had I heard him sob without abandon. That first week, I couldn’t complete the simple task of washing the dishes; instead, I found myself huddled on the kitchen floor with my own new kind of cry: non-cathartic, primal and ugly.

But as the days and weeks passed, we cried less and did more. Yes, it was still horribly unfair that this sweet little boy’s brain didn’t work properly which meant that he couldn’t learn how to talk or even how to play. But an extraordinary group of compassionate doctors, therapists, and teachers gave us hope. “When you catch it this early, there’s so much you can do,” “autism doesn’t have to be a lifelong affliction,” “kids on the spectrum tend to do very well in therapy.” We played these snippets of promises over and over again in our minds, and we chose to believe them even in the face of inconclusive evidence.

Back in the classroom, the teachers are silently cheering on my son, because he’s broken out of his frozen pose and taken a single step toward his snack. It is a silent cheer because they know that if they make eye contact with him, he will sense their expectations and shut down. My son is smart and sensitive. He knows what he’s good at, and what he’s not, and he doesn’t want an audience around when he’s taking risks.

The social worker in the booth is explaining to me how exciting this is, since it generally takes several “prompts” to get my son from one group activity to another: they have to verbally tell him it’s time to go to the snack table, then take his hand and walk him over, and then pull out his chair for him to sit. The sting that accompanies these kinds of observations about your child never really goes away—it just gets less sharp with time. You don’t physically flinch anymore, and you use the remarkable progress he’s already made as a salve. Since his therapies began two years ago, my son has learned how to point, clap and wave. Although he had always understood social cues and made eye contact with immediate family, he has now demonstrated to each of his umpteen therapists what an expressive, inquisitive, and genuinely fun companion he can be in his one-to-one sessions. But put him in a classroom with a few other children and throw in a few expectations, and he hides himself away.

My son has managed to kick it up a level by taking another step forward, and now he stands still with his eyes closed. Although I want to hear what the social worker has to say, complete with its sting, I want to hear something else more. I want her to tell me that he’ll be okay. That clear and simple statement that would be completely unprofessional, not to mention unwise, is what every parent like me wants, and the desire is so desperate that it is a palpable part of any conversation with any therapist at any time—even a quick update in a hallway. My husband and I have learned to bury this obsession so that it doesn’t cripple us, but it would be a lie to deny its existence.

Although it would be a real victory if my son made it to the snack table, our struggle would hardly be over, even if he were able to enjoy his peers and play with them in a classroom. My son has an even more pressing problem: he has almost no expressive language. He understands a whole lot, but he is appraxic, which is another one of those new words you have to learn: it means your child can’t coordinate his breath and the muscles in his mouth and tongue in order to produce speech. By the time typically developing children are three, they have already learned most of the words they will ever use. My son had zero words at 18 months (and 19 months, and 20 months…), and we panicked. We felt like we were dodging a slow-moving bullet aimed at our son, and we had this small window of opportunity to move him out of its path. So we followed our first instinct, which was to drag him to safety with all our might. He was going to talk, sooner rather than later, and my husband and I were going to make that happen. My son has always loved videos, so one morning, I paused the video. When he turned to me to complain, I pointed to the ball frozen on the screen and asked him to say “ba.” I was not going to let him slide on this one—I was going to literally will him into speech. My desperate little boy grunted at the video, which was his way to tell me to unfreeze it. I refused. This was combat. At first he was confused, then upset, then angry, and finally after 20 minutes, he walked away and quietly began playing with his stacking rings. He had clearly waved a white flag and I had to lay down my weapon. I’d like to boast that I learned my lesson and never again demanded that he perform beyond his capabilities, but the truth is that every once in a while, we need to test the waters. Can he really not do it, or does he just need a stronger motivator? What I did learn was that I needed to respect him more. At that time, he couldn’t speak. He was managing to communicate, however. He was managing to tell us that brute force wasn’t going to work, and that he was not a scientific experiment—he was a person, albeit a small one. We had to find a way not only to encourage his hard work, but to honor it. We had to make the choice to be proud of his efforts instead of disappointed by his excruciatingly slow progress.

Now all the teachers’ eyes are glued to my brave little boy who has managed to walk all the way over to the table and is slowly sitting, first on the armrest, and then finally on the chair. His eyes are closed, but he opens them to take a big strong bite of his cookie. We smile victoriously, and I stop my tears from welling up. We still have a long way to go, and if I let myself really cry, I would not be able to stop for weeks. And my weeks belong to my son, for now. All the professionals think this is a meaningful development, and they are surprised that he was so successful so quickly. Even though a part of me still thinks it’s crazy to celebrate these baby steps, I celebrate. The cynic in me argues that I’m sitting here celebrating something that every other 3-year-old in the country, including the other special needs kids in my son’s class, can do without a second thought. But the better me argues back that everyone, throughout the course of life, has challenges; hopefully my son is getting his out of the way early.

Sometimes I’m genuinely surprised that we manage to maintain our level of optimism, especially considering our expectations at the start. I used to think my son would develop speech in his first 6 months of therapy. I used to fantasize about the first time he’d say “mommy” and how I would cry with happiness. I used to think that once he made one baby step, others would quickly follow and that in no time at all, he would be caught up to his peers. I used to think that mild autism was mild. I had to learn, alongside my husband, about the unprecedented amounts of patience and persistence. I had to learn that you don’t get that “mommy” moment, because first he learns to say the “ma” sound without the meaning and he only ever says it when you prompt him, never on his own, and even if he does say it, once or twice, it isn’t something you’re sure he means and it isn’t something he can repeat. Eventually, you adjust your expectations. And you do get a modified version of “mommy” moments, like when you see him hug his stuffed elephant for the first time, or hold up his arms to be a tree in yoga class, or get himself to the snack table. You witness these tiny shifts in the landscape of his mind that make a tiny part of you stop worrying. You don’t get a lot of them: maybe two or three a month if you’re lucky. And if you’re really lucky, when you add them all up, they equal the little boy you thought you gave birth to.

School is dismissed, and we go home to our overcrowded apartment. Like everyone else in New York City, we don’t have enough space, but these days what our one-bedroom-plus-den cannot accommodate are the huge conflicting emotions that barge in and make themselves at home. We are constantly hopeful and terrified, mostly in that order. We are hopeful that our son will be one of the success stories: that our pediatric neurologist will one day soon tell us that he is off the autistic spectrum; that when he is fifteen, his girlfriend’s jaw will drop when we tell her about these events in his distant infancy. But we are also terrified of parents with older autistic children who claim that recovery is a myth, and of therapists who tell us point blank that our son’s challenges are here to stay.

I think 80% of the children that attend my son’s nursery stay in the special needs school system when they leave. The reason I think it and that I don’t know it, is that it’s not something I want to know. And if somebody confirmed that it was true, I would argue that perhaps out of those 80%, half stayed in special needs only another year or two and then mainstreamed. I want my son to mainstream. For all the obvious reasons: I don’t want him to struggle so much; I don’t want him to feel different; I don’t want the financial burden of special needs schools. Not only do I want him to mainstream; I want him to mainstream by kindergarten. At least I used to want that. I still want that, but with an asterisk. I love my son. In fact, my husband and I are so desperately in love with him that we are compelled to use every resource we have to teach him how to speak and how to make friends. And if that happens by kindergarten, fantastic. And if it happens in seventh grade, so be it. We’re stuck. He has charmed us like every other 3-year-old charms his parents. When he’s not driving us crazy, and even when he is, we’re mostly just grateful to be in his company.

Although my son has more than his share of challenges, he also gets more support. And although my husband and I dedicate so much of our energies to his therapies, we get so much back. We get to bask in my son’s progress, and we get to appreciate his therapists and their extraordinary dedication to our family: we are richer people for having known them. The truth is that our son may be autistic, but he is also perfect, with every awe-inspiring, voracious, and joyful snickerdoodle bite he takes.