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Nick’s Story

What is Autism?

Autism spectrum disorder (ASD) is a neurological disorder that affects development in the areas of social interaction, sensory perception, and verbal and nonverbal communication. At its severest, it may also involve self-injurious or aggressive behavior (hitting, kicking, biting, head-banging, pica—swallowing of non-food objects like chemicals or legos). It often includes some level of obsessive/compulsive behavior (lining objects up; closing doors, drawers, toilet lids, open containers, etc. while others need them open; turning off appliances whether in use or not—the number of permutations is endless), and repetitive actions that are self-soothing (rocking, rubbing an object or objects, hand flapping, etc.). The obsessiveness might also involve a subject or category of objects (I’ve known autistics obsessed with the Beatles, trains, logos, the Weather Channel, and Wheel of Fortune, among other things).

Autism is considered a spectrum disorder because individuals can have wildly different assortments of the characteristics. Some people’s autism is mostly unnoticeable to neurotypical individuals. One example is lecturer Temple Grandin, who has a Ph.D. in animal science and has written several books, although she still struggles with aspects of her autism. Like Grandin, people at the high end of the spectrum are often simply perceived as “odd” or “eccentric” although they have disabling difficulties with social interaction, sensory perception, and OCD and still need ways to self-soothe. Sometimes you’ll hear autism called Asperger’s Syndrome, although these days Asperger’s has been folded into ASD in all the diagnostic criteria.

Some autistics are severely disabled—they don’t communicate well, 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.


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 and often just mumbles them as a pro forma response—he doesn’t see the need for speech. Like some severely disabled autistics, he is mind-blind—he believes 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 responds to pain differently than most. Even when he feels pain, he doesn’t know how to communicate that, so we have to deduce it from clues in his behavior. He doesn’t like to be touched because touch is difficult to process for him. Some autistic people have a sensitivity to light, others to sound.

Their perception can also be problematic. Neurotypicals sort sensory input by significance. If we’re reading, we block out traffic noise, the refrigerator’s whir, the fan blowing.

Autistics take it in on the same level. They’re 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 speaks to you in gibberish with a full-face mask that hides the person’s expression, gesticulating wildly when you don’t respond because you don’t understand what the person’s 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 often does.

Social Skill Problems

Autistics perceive human emotions, and yes, they have emotions; it’s a common misconception that they don’t. But they don’t always understand the reason behind them or empathize. Or they show sympathy in atypical ways. If I’m upset, Nick doesn’t always understand or appear 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. Or so I assumed at the time. Now I know that he didn’t know how else to show that my crying upset him, too. That he empathized.

He enjoys being with me—his face lights up when I enter a room—so I know he loves me. He just doesn’t know how to demonstrate it because he has trouble putting himself in my shoes. The most severe autistics 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, severely disabled 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 I’m not sure he understands 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 without understanding their necessity. He has become cue-dependent—he sometimes waits for us to tell him 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 (it’s a miracle he wasn’t hurt or killed)—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.

Autistics tend to be logical. Why do we tell them not to talk to strangers, but insist on their responding to a parking lot attendant or librarian or even a relative they don’t know? In Nick’s case, why can he run in a gym but not during a theatrical performance? Why is it okay to hum to himself on a walk but not in a library? Or vocalize in a restaurant but not at a banquet with a speaker? There are myriad other rules for social behavior that are difficult for an autistic child or adult to assimilate because they’re illogical. They’re even more difficult for those like my son 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. It’s like living with someone from another culture. I deal with Nick’s 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 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 autism has taught me to really look at my surroundings, to pay attention, to recognize what’s important. He’s taught me to question rules that make no sense, to be more tolerant of people’s differences and understand that people are who they are. 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 neurotypical children in the world.

For more information, try these links:

Wikipedia has a very thorough explanation of Autism Spectrum.

Here’s an excellent Guide to Safety on the Internet for autistics.

This wonderful article, written by an autistic who’s part of the autistic rights/autism acceptance movement, discusses autism from the perspective of an autistic.

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 caregivers and parents 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 a 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 set them apart 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.