What’s Wrong With This Picture? My autistic son doesn’t need to be fixed.Kerry Cohen
At the playground, Ezra climbs the wooden structure and tentatively approaches the slide. He is overly cautious, always afraid he’ll have a feeling or sensation he didn’t prepare for. While other kids jump from high platforms and race around on tricycles, Ezra won’t even go down the slide alone. Occupational therapists call this “problems with self-regulation.” He doesn’t feel confident handling the unfamiliar. It’s one of the ways his autism presents itself.
“Catch it,” he says to me. It’s a line from The Wonder Pets, but I know what he means: “Catch me.” I hold him lightly under his arms and help him go slowly down the slide. A boy around four or five years old, a year or so older than Ezra, approaches him.
“I’m going to go down that slide too!” he tells Ezra. His mother smiles at me, but I start to tense up.
“Cheese, cabbage, popcorn,” Ezra says back to the boy, quoting again from one of his videos. This is what he usually says to kids who are older than him, I think because in this particular video the girl who reads these words from a book is older than him. It’s hard to know why, though. He smiles as he says it. At times like this, I’m glad his speech is so unintelligible. The boy just smiles back and races around to the ladder for the slide.
“How old is he?” the mother asks. I look for evidence that she’s wondering what’s wrong with him, but I don’t see any in her expression. Ezra is small for his age, so most people still see him as a baby, which is always a relief.
“He’s three,” I say. It’s not really a lie. He’s closer to four than three, but officially he is still three. I analyze her reaction, but it’s just a pleasant smile. “Cute,” she says, and I release my breath.
I am just beginning to get a sense of what these sorts of pleasant playground conversations are like for most parents, for parents whose child doesn’t have delays. When people ask me questions about Griffin, my typically developing child, who is younger than Ezra, the answers come easily. I don’t feel like I have to guard myself. One of the terrible ironies of parenting a child with autism is that, while the child is thought to be unconcerned with other people’s reactions, I have become hyper-aware of them. Nothing gets past me when it comes to other people’s experiences of my kid. I have learned to quickly remove him from the care of therapists and evaluators who were more interested in him as a case than a person, and I’ve hurried him away from plenty of strangers eager to make him something easy for them to grasp.
Ezra’s autism is not typical, if there even is such a thing. His diagnosis is PDD-NOS, a diagnosis given when a child has some but not all the criteria for autism. It basically means, “something is wrong with his development, but we don’t know what.” Most of his issues are with communication. He developed language late, and when he did he used mostly scripted language, language he had picked up from videos, to communicate. He also took longer to gesture, such as pointing at objects he wanted or wanted to share with me, and he still doesn’t know how to nod. He doesn’t ask or answer questions, or look to his father or me to see whether something is safe. He will only eat two things, and neither of those things can really be called “food,” as they hold little nutritional value. He’s overly cautious and has to be supported through transitions. Those are the areas in which he struggles. He does have mostly normal eye contact. He’s loving and affectionate. He’s joyful, connected, and bonded with his father and me. He plays with a variety of toys, and he does so appropriately. He’s highly intelligent and a fast learner. Whenever I outline this list – the list of where he is “behind” and where he is “on par” or “ahead” – I get uncomfortable. None of it captures who he really is, which can’t be contained in a paragraph or maybe even with words. He’s just Ezra. He’s just who he is.
Most mothers feel that sense that their persons are no longer their own when they become pregnant. Strangers touch their bellies. Acquaintances dole out unsolicited advice. Where before no one was interested, suddenly everybody feels the right to reprimand you for your choices. When it comes to special needs children, this cultural ownership is exponential. I have been astounded by the comments I’ve received – from strangers, friends, family members and even professionals. When we were first feeling concerned about Ezra’s development, a woman from my mom’s group said, “We think our son is developing ahead of schedule because we take him camping so much. Whenever I outline the list of where he is “behind,” I get uncomfortable. He’s just Ezra. He’s just who he is. I read in a magazine if you get him outside a lot, he’ll develop better.” Another friend said, “Have you tried talking to him more?” A family member told me, “Maybe you should stop worrying about it so much and just relax. He’s probably feeling your stress.” Even another parent of a child with special needs commented, “Her issues have been challenging, but we’re just so thankful that at least she started talking on time. That would have been awful.” Once, in a grocery store, a total stranger pulled me aside and told me about a treatment center, about which I was well aware, where they use “loving the child” to try to make the child more “normal.” Must I point out the many levels on which I took offense? This doesn’t include the endless looks of pity I’ve received, the murmurs of “sorry,” and the head shakes.
At the end of the day, I don’t blame these people. I really don’t. They’re under the same spell as everyone else when it comes to children’s atypical development. Studies suggest it can help to get early intervention. They also suggest the brain is plastic enough to continue to change and adapt as we grow, but our society has latched on to this other idea that we have to do something, and we have to do it fast. Organizations push for earlier and earlier detection. Pediatricians have been given new guidelines for screening children as young as twelve months for developmental delays. The suggestion is clear: A child with delays is unacceptable. Just like how Ezra gets uncomfortable and anxious when he has to face a situation he doesn’t intrinsically understand, other people get nervous when a person doesn’t fit their expectations.
For a long time, I struggled with the pain I felt at being told my son wasn’t good enough. It is hard to describe how painful it is to read the evaluation reports: your son – your beautiful, chubby, funny little boy, the one with the Horshack laugh, the one who uses stuffed animals to act out scenes from his favorite video – is not doing x, y and z. He is doing w, but only about as well as ten percent of the other kids his age. He is in the bottom percentile for this, and doesn’t even get on the charts for that. For a long time, I struggled with the pain I felt at being told my son wasn’t good enough. He doesn’t do v when we ask him to, which must mean he can’t do v at all. He is no good. He is no good at all. When I picked him up from our first stab at a regular preschool, one where special needs kids were supposed to be welcome, I always had to brace myself for their day’s account. He didn’t listen. He cried and cried and they didn’t know why. He wouldn’t sit with the other children during story time. I appreciated why so many other parents rushed their children into treatment. Why they were so desperate to make the children “normal,” more like other kids.
One day, though, I started thinking in a different way. Was there really anything “wrong” with my son? Was there really a reason for people to feel sorry for me? My son is happy, loving and highly intelligent. He communicates differently than others, yes. He flaps his arms when he’s excited, yes. He has his challenges, yes, but are they really so much worse than those of children who throw tantrums when they don’t get their way? Worse than the child who will do anything at all, including sacrificing himself, to be friends with the popular kids? Yet, most every professional wants Ezra to care more about making friends. Finally at some point it occurred to me: why? So everyone else can understand his desires better? So everyone else can feel more comfortable? Is it really so awful if Ezra chooses to spend time by himself, if he doesn’t concern himself with what everyone else thinks about who he is?
Parenting is hard, no matter the circumstances. Griffin, my typically developing child, who is demanding and wants to be near me all the time, has challenged me in completely different ways than Ezra has. I can confidently assert that Griffin’s tests to my parenting have been more taxing. But no one is overly concerned with those struggles. They smile at Griffin, who smiles back at them, which makes them feel good. And then they want to know about Ezra. They want to know what I’m doing to change him. They want to know, perhaps, what they can do so that they don’t wind up with a child like him.
Today, Ezra goes to a school where the teachers celebrate his strengths and see him as a whole child. I wish there were better ways to talk about how he compares to other children, language that didn’t put him in some kind of race. He gets feeding and speech therapy from professionals who recognize that, while he needs this support, he also does many wonderful things. He is ahead of the game in some areas and behind in others.
I wish there were better ways to talk about how he compares to other children, language that didn’t put him in some kind of race. But in some ways, hearing strangers’ concerns has made parenting Ezra easier. He’s still very young, but already I feel clear about what I need to do to be a good mother to him. I’ll keep working with him to try to get him to eat more foods and to use clearer language. But if I am only able to do one thing for him as I usher him through childhood, it will be this: I will protect him from anyone who might make him feel that he is somehow not perfect.