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Nick’s Story

What is Autism?

Nick at three
Nick at three

Autism is a neurological disorder that affects development in the areas of social interaction, sensory perception, and communication (any kind of communication, not just language). It may also involve self-injurious or aggressive behavior (hitting, kicking, biting, head-banging, swallowing of non-food objects like chemicals or legos) and often includes some level of obsessive/compulsive behavior (lining objects up; compulsively closing all doors, drawers, toilet lids, open containers, etc.; turning off appliances—the number of permutations is endless) and repetitive actions (rocking or hand flapping).

Autism is a spectrum disorder—individuals are disabled to varying degrees. Some people’s autism is so slight as to rarely attract notice. One example is lecturer Temple Grandin, who has a Ph.D. in animal science, although she still struggles with the sensory perception and social interaction aspects of autism. People at the high end of the spectrum are often simply perceived as “odd” or “eccentric.” Sometimes you’ll hear that called Asperger’s Syndrome.

Other autistics are severely disabled—they can’t talk, have trouble behaving appropriately in public, react strongly to sensory input, and in general are incapable of functioning in the world without assistance and constant supervision. My adult son falls into that category.

Autism from My Perspective

Communication Difficulties

Nick has almost no ability to communicate using speech or sign language or anything else. Although he can say about 100 words, he rarely uses them spontaneously—he doesn’t see the need for it. Like many severely disabled autistics, he is mind-blind—he believes that what he sees or knows is what everyone sees or knows. How can a person understand the importance of communication if he thinks everyone can read his mind?

Sensory Difficulties

Nick responding to<br /> the camera flash by<br /> covering his ears
Nick responding to
the camera flash by
covering his ears

Nick has a high tolerance for pain, which can be dangerous. Even when he feels pain, he doesn’t communicate that, so we have to deduce it from clues in his behavior. Some autistic people have a sensitivity to light, others to sound. But what’s most problematic is how they perceive the world; we sort sensory input according to its importance. If we’re reading, we block out the traffic noise outside, the whir of the refrigerator, the blowing of a fan. Autistics take it in on the same level. They’re constantly being bombarded with sensory input they can’t organize. Imagine being in a dark room with a strobe light going. Two people are circulating, one with a bleach-soaked sponge and the other wearing strong perfume. Music is playing from two different stations on two different radios. Then someone comes and speaks to you in gibberish from behind a mask, gesticulating wildly when you don’t respond because you don’t understand what they’re saying (or can’t distinguish it from the other sounds bombarding your senses). This was an actual exercise used to train high school students to be peer tutors for autistic fellow students. It was meant to help them understand being autistic. After about five minutes, most reacted by putting their heads down on their desks and withdrawing—just like someone who’s severely autistic does nearly every day.

Social Skill Problems

An ability to put oneself in another’s shoes is essential to social interaction, to understanding the importance of behaving appropriately in public, but autistics don’t have it (that mind-blind thing again). Autistics have trouble reading human emotions. They do have emotions; it’s a common misconception that they don’t, but their emotions are generally centered around things that involve them. The most severe don’t watch news stories and cry for the “poor lady who lost her cat,” as another child might, or feel joy when the hero wins the battle. They don’t care, because it isn’t happening to them. If I’m upset, Nick doesn’t understand and appears not to care. One night when I was crying, he came and sat on my lap. I perked up to see him actually comforting me—what a breakthrough!—until he asked for “hot dogs.” He’d come to ask for his favorite food, that’s all.

Yet he enjoys being with me—his face lights up when I enter a room. So I know he loves me. He just doesn’t care what I feel unless it concerns him directly. He can’t conceive of me not feeling the same things he is. A number of studies have determined that while even a mentally disabled child can empathize, an autistic child can’t. Their brains don’t work that way. And that means they don’t understand why they should follow social rules. The most severe can’t understand the concept of “I wouldn’t like it if somebody did that to me.” They often don’t understand why they should care what people think of them, so they do whatever they want.

This means that very young autistics are incredibly difficult to manage. They come across as spoiled or bratty because they’re usually hyperactive, they’re trying to make sense of their jumbled sensory perceptions, and they don’t respond to punishment (they don’t understand the purpose). You can teach them to behave eventually—my son’s regular daily caregiver and his teachers have worked hard to bring him to where he follows rules and directions, but he’ll never understand why it’s necessary. And only as a teenager has he started accepting rules. But now he’s swung the other way—he follows rules like a soldier but without understanding their necessity. He waits for me to give him permission to sit, to eat, to go to his room, to get in the car. He can’t internalize when it’s appropriate to do these things; he just waits for me (or his teacher or caregiver) to give the order. Of course, the alternative—him doing as he pleases, like the time he ran out into the middle of the highway and stopped traffic for miles—is not a good one, so we put up with having to give him constant instructions. We’re working on trying to get him to be more independent.

Autism is primarily a developmental disability, not a mental one. Some severely disabled autistic children may have average or even above-average intelligence. That’s another oddity of the disorder. Autistic individuals of Temple Grandin’s high intelligence teach themselves to assimilate social behavior by determining the rules objectively, but even that can be difficult. How can anyone explain why running in a grocery store at breakneck speed is socially unacceptable when running in a gymnasium is just fine? To my son, they’re both big buildings with high ceilings, so why not run in both? There are myriad other rules for social behavior that are difficult for an autistic child or adult to assimilate, and even more difficult for those who don’t have the high intelligence to teach themselves. As you might imagine, this inability to understand social conventions affects all of life.

Combine sensory overload with communication problems and poor social skills, and you force a person to withdraw just to protect themselves. Temple Grandin describes this in her essay, An Inside View of Autism. Being autistic herself, she explains it better than I can.

But I can tell you what it’s like being the parent of an autistic child. Mostly, it’s like living with a foreigner from another culture. I deal with his confusion about my world on many different levels. In order to interact with him, I have to learn his routines and interpret his communications without any translators to help me. And just when I think I understand what he’s trying to say or why he’s doing something, he surprises me. It’s frustrating, tiring work, and it never stops.

At the same time, just as growing up in a foreign culture helped me distinguish my own culture more clearly, my son’s disability has taught me to really look at my surroundings, to pay attention, to recognize what’s important. He’s taught me to be more tolerant of people’s differences and understand that sometimes people can’t help what they are, disabled or otherwise. Most of all, he’s taught me to laugh at myself. Thanks to him, I see life as a comedy these days, believe it or not.

And that’s a gift I wouldn’t exchange for all the “normal” children in the world.

One More Issue for the Soapbox

I deliberately use the term “autistic son” and even “autistic” as a noun for an autistic person, even though some in the community of the disabled advocate the use of “people-first” language (they’d say I should refer to Nick as a “child with autism,” thus putting the “child” part first). As both a writer and the parent of an autistic adult, I find “people-first” language not only misleading but unhelpful. For one thing, autism isn’t a disease that my otherwise “normal” son somehow “caught.” Even if it were, the term autistic shouldn’t be considered so insulting that I have to rearrange normal syntax to disguise it.

Secondly, my son’s autism permeates his life even more than being an overweight woman permeates mine. If I speak of “the short man over there who can’t reach the shelf,” I’m not negating his other fine qualities by focusing on his shortness. At that moment, his shortness affects his life more than anything else. My son’s autism affects every aspect of his life. I can’t treat him as a person first and an autistic second. They are inextricable entities. I must always be thinking ahead, determining if the activity he’s engaged in could hurt him or could establish a dangerous precedent (autistics thrive on routine, so if an indulgence becomes an unhealthy obsession, you have a fight on your hands).

As a writer, I also find “people-first” language foolish. If all we had to do to change the attitudes of people toward the disabled (or fat people or women or bald people) was to rearrange words in a sentence, then I’d be all for it, but unfortunately, neither English nor people work that way. Is the statement, “people who are female should make less money than people who are male,” less obnoxious than “women should make less money than men”? More awkward, but not less obnoxious. As long as our society keeps trying to hide our disabled or ignore them or make them poster children instead of just treating them as part of the varied stream of humanity in a diverse world, no one will look past their disabilities to realize that “blind people” have as varied lives, interests, and needs as “bald people” and “young people” and any other group characterized by one similarity. And no amount of “people-first” language will change that.

I could say more, but Dr. Bernard Rimland, a renowned authority on autism and the father of an autistic son, says it so much better in his article, Beware the Advozealots. Jim Sinclair voices his opinion as an autistic man in his article, “Why I Dislike ‘Person First’  Language.”