Autism is the second most common developmental delay diagnosed in the US; a recent study suggests that as many as one child in 150 has autism. Despite its prevalence, autism is a disorder that is still largely misunderstood. Many people have an idea of what a “typical” autistic person is like: non-verbal, dumb, sitting in a corner rocking. Perhaps they picture someone reciting complex mathematical formulas while unable to spell their own name. The truth is, there’s no such thing as a typical autistic person, any more than there’s a typical brown-haired person, or short person, or deaf person. High-functioning autism can be difficult to diagnose in part because the symptoms can vary so widely, and children with high-functioning autism or Asperger syndrome are often thought to simply be overly shy, “quirky”, or undisciplined. Fortunately, there’s a new rating scale that’s helpful in diagnosing Asperger syndrome, and as more is understood about autism spectrum disorders in the medical community, children are more likely to get an accurate diagnosis and begin receiving services sooner than in the past. While there is a wealth of information out there that describes the general symptoms of autism and AS, there is little that can really describe what the life of an autistic child is like as he deals with those symptoms.
My son Jeremy is eight and has Asperger syndrome. He is a typical little boy in many ways, enjoying cartoons and Batman, playing outside and especially playing computer games. Unlike many little boys, though, he has to watch the same cartoons at the same time every week. If he has to miss Batman for any reason, he’s upset over it for weeks. Actually, longer than just weeks-he will remember it and worry over it until it happens again, and then will add the most recent disruption of his schedule to the long list in his mind. He studies Batman and collects action figures, but rarely plays with them like most boys do. He simply likes to have them at hand. He plays outside, but only if there is no chance of him spotting a caterpillar-even the picture of one terrifies him. He enjoys going into the water, in a pool or at the beach, but has to be fully clothed in long sleeves, pants, socks and a hat at all times. And the computer is almost an obsession with him.
Jeremy’s life is shaped by things that seem incomprehensible to most of us. For some unknown sensory reason, he can not wear shorts, or even short sleeves, even in the warmest weather. He used to; we have pictures of him as a little guy with his skinny, pale arms and legs sticking out as he runs around in a pair of shortalls or a tank top and shorts. He gradually began to need to be covered-first his legs, then his arms, then his feet, and now his head, which makes washing his long hair a dreaded chore. People have said to me, “just cut his hair-you’re the parent, he’s the child,” or “just make him wear shorts. or take off the hat. or the socks. or…” But the thing people don’t understand is that even though there are no nerves in his hair, and he physically wouldn’t feel anything if it was cut, to him it would cause pain. He can hold witty, intelligent conversations with any adult, but if his hat comes off, he is rendered completely non-verbal. When he’s in a new place, or around unfamiliar people, he will not talk. When he attended kindergarten at a local school, he refused to play on the playground when the other kindergarten class was out there. His twin brother was in that class, and he saw those kids every day, but he would not leave his teacher even to play with his brother. Why? Because as he put it, they weren’t his people. His people were the ones in his class. Everyone else didn’t belong, and he didn’t feel safe with them.
Jeremy can detect subtle changes in tone and pitch that drive him crazy. He can handle the sound of the gong in his music therapy room, but the slightest tap on the tom or bass drum hurts his ears. The echoes in a parking garage cause him physical pain. And if there are several sounds happening at once, at a fair, for example, he is simply miserable.
Jeremy doesn’t give kisses like “normal” kids do. Instead, he touches his forehead to mine. He doesn’t hug. But any time his father or I leave, he has to follow us to the door, and the last thing we have to do before we walk out is say goodbye to him. If he gets upset, often the only way to calm him is to hold him tight and rock him, and brush his arms.
He has a hard time with decisions. He has very definite likes and dislikes, but ask him to choose between two things he likes and you’re in for a long and frustrating wait. Choosing a video to rent can take forever. Ask him if he wants orange or apple juice, the blue shirt or the red shirt, and he will either say he doesn’t know, or ask for both. If he has a dollar to spend, prepare to spend an entire afternoon watching him try and decide what to buy, and in the end he’ll probably give up and wait till the next trip, and then do it all again.
He is sensitive to the textures of foods, and only recently quit chewing on everything within reach. For years, his sleeves and the fronts of his shirts were soaking wet, because he chewed them incessantly. He won’t eat many vegetables, or anything made from “piggies. He just has a thing for pigs.
Jeremy is overly sensitive to things that make him uncomfortable, but it goes both ways. I have never in my life seen a child get so excited over the small things we all take for granted. From the time he could talk, any time I took him outside on a nice day he would exclaim, “It’s a sunny day!” Always as if it was the first he’d ever seen the sun, and he knew it was destined to be the most marvelous day in the world. At least once a week he tells me he’s had the best day ever, which balances out the many worst days ever that he has. He gets so excited when he beats a computer game or helps his dad outside. He goes and stays with his grandparents and loves having them all to himself. He works hard in his occupational and physical therapies (he has low muscle tone and some motor delays, and issues with vestibular and bilateral coordination-in other words, he’s kinda wobbly and clumsy and not the strongest kid in the world) and loves showing me the projects he makes with Joy in OT or telling me how he beat Jason in a scooter race.
Jeremy knows he’s different. Most of the time, he’s OK with it. A smart, imaginative kid, he makes up elaborate stories about the places he’s from in outer space, and will try and convince me that he shouldn’t have to get off the computer after an hour. According to him, time is different in “his world”, and an hour there is more like five hours here. He’s aware that he knows more about space and Batman than most kids his age, and he’s proud of it, as he should be. But it can be hard, too. Even though he has no real desire to have much of a social life, it bothers him to see his siblings-especially his twin-take off and go on outings and playdates. He doesn’t really understand how to interact with other kids, and withdraws at things like birthday parties, but he’s bright enough to know that other kids do those things and he can’t. As his mom, it’s heartbreaking to see him excited about the idea of a birthday party and then once he’s there, to watch him shut down and simply not be able to do it. It’s devastating to see your child hurt, and even more when there isn’t a damn thing you can do to make it better. I can only imagine what it feels like to be him at those times.
He is anything but typical, but his challenges and joys are typical of many kids with autism. Despite the sensory and social issues, these are children first and foremost, and more than anything they need understanding and acceptance.
