Authors: John Elder Robison
Tags: #Self-Help
Be Different: Adventures of a Free-Range Aspergian With Practical Advice for Aspergians, Misfits, Families & Teachers (21 page)
S
o what is Asperger’s? I’ll offer my insight interwoven with the “official” definition from the
Diagnostic and Statistical Manual of Mental Disorders
(DSM IV), which doctors and psychologists use. The main thing to understand about Asperger’s is that it’s a neurological difference—a difference in the way our brains are made. It’s one of the conditions that doctors call an autism spectrum disorder, or ASD. In fact, in the upcoming edition of the DSM, due in 2013, Asperger’s will no longer be listed as a separate diagnosis. It will be categorized as one of the autism spectrum disorders. There’s no way to measure any form of autism with instruments—at least not yet—so a diagnosis must be made by asking questions and observing our behavior. There are six major points a doctor or mental health professional will look at when judging whether a patient has Asperger’s or some other form of autism.
First of all, the person must have difficulty interacting with other people. I’ve listed four ways one might have
trouble; the doctors say at least two have to apply for someone to be diagnosed.
A. The person might have difficulty with nonverbal behaviors like eye-to-eye gaze or reading facial expressions, body postures, and gestures. I sure had a lot of trouble with those. Things didn’t really improve until I learned about my own Asperger’s as an adult. But knowledge is power, and I’ve made huge headway with these behaviors today.
B. The person might not be able to make friends with kids his own age, at his own level. That’s something I remember well from first grade—my total inability to make friends my own age. The kids in my class just laughed at me, and called me names like Monkey Face and Retard. There were two things that saved me from total frustration over that. First, some younger kids looked up to me. After all, any six-year-old is like a god to a toddler, even a friendless one like me. Second, a few adults stayed friends with me despite the strange things I said and did. Luckily, I’ve gotten past that and I now have plenty of friends my own age.
C. People with Asperger’s often seem self-absorbed or uninterested in other people. For example, a classmate might say, “Look at my test! I got an A+,” and the Aspergian might reply, “So what?” Anyone might react with total indifference every now and then, but acting
disengaged and uninterested all the time is an indication that something may be up. Disconnection from other people and what they do is a sign of Asperger’s.
This is a hard thing for people on the spectrum to work on, because while our self-absorption is innocent, others see it as malicious. It’s not. We are simply oblivious of much of what goes on around us, because we are wrapped up in our own thoughts.
D. When two people approach each other, one often smiles, and the other smiles back, mirroring the first person’s expression. One person might say, “Check out this new video,” and the other person might answer, “Yeah, I’ve been wanting to see that one.” Psychologists call that kind of behavior “social or emotional reciprocity.” Often, people with Asperger’s don’t act that way. People smile at me, and I just look back at them with a flat expression. Someone might tell me about her video, and I’ll say nothing.
I see myself in every one of those points. However, now that I’m an adult, I have learned how to adapt, and I’ve learned what other people expect of me. As a result, the differences that disabled me as a kid just make me eccentric as a grown-up. If there is a good side to life with Asperger’s, it’s the knowledge that we just get better with age.
That’s not all there is to an Asperger diagnosis. In addition to poor interpersonal skills, the person must also have
unusual interests, strange patterns of behavior, or fixations on objects. The diagnostic manual says that at least one of the four issues below must apply.
A. The person must have “an all-encompassing preoccupation” that is abnormal in intensity or focus. That’s a mouthful, and it is kind of tricky to understand. I think this point is where many of our interests lie and where becoming a grown-up changes perceptions. For example, if you’re ten years old and you can’t talk about anything but carnivorous dinosaurs, you’re abnormal. If you’re the same way at thirty-five and a professor of paleontology, you are the smartest guy in your department. If you are fifteen years old and you can’t think about anything but girls, you are normal. If you can’t think about anything but light switches, you may be Aspergian. What that shows is that perceived mental health is sometimes just a matter of context and situation.
B. Alternately, the person might be someone who is stuck on what the doctors call “nonfunctional rituals or routines.” Here’s an example: You walk through the door of your school and immediately turn to check the potted plants by the door. You
have
to check to make sure that no one has thrown trash in the pots. If there is any trash, you
have
to get rid of it before entering homeroom. You go to the bathroom, get some paper towels, and then use them to pick up the trash without actually touching it so that you can throw it out. On
your way to homeroom, you check every door you pass because the doors are supposed to be closed and you
must
make sure that rule is being followed. When you reach the bathroom near your own classroom, you go inside and make sure the light is on. You also make sure there are paper towels and toilet paper in case you need them later. You do your best, but you are always ten minutes late to class because you
must
do those things before going into your classroom.
That’s the kind of routine they are talking about. It disrupts someone’s life and causes issues with other people, and when you get right down to it, there’s no purpose to it. I remember my little rituals well. Remind me to tell you about my pet trash.
C. The person might display stereotyped and repetitive motor mannerisms. For example, I used to rock back and forth endlessly. “Stop rocking!” grown-ups would yell at me, and I’d stop, but a moment later I’d start rocking again without even thinking about it. I always thought rocking was harmless to others and comforting to me, but it drove grown-ups wild. And that wasn’t all. They’d also pick on me for twisting my hands a certain way, or tapping my foot in rhythmic patterns. Other people were convinced I did those things to drive them crazy, but it was really unconscious. I certainly didn’t mean to be annoying.
I developed a whole host of strange mannerisms as a kid, but when I saw how they got me teased, I taught
myself to control myself in public. For the most part, it worked. Some Aspergians learn to manage this pretty well; others don’t.
D. The person might be preoccupied with parts of objects. Once again, the shrinks have said some “parts” are okay and others are “abnormal.” A preoccupation with girls’ legs is fine; a preoccupation with the differences between Standard and Kohler flush handles on the bathroom toilets is weird. If a guy talks about his female-leg fixation, all the guys around him will understand and chime in. If he talks about plumbing levers instead, those same guys will send him to the doctor. That’s how we tell what’s weird from what’s normal. Weird preoccupations often get us into trouble.
Taken individually, those behaviors are harmless. But when a bunch of them occur together, and we are compelled to do them constantly, they can add up to a disability. It’s all a matter of degree and control.
Psychologists talk a lot about rituals, how we struggle with them, and the ways perceptions of rituals change as we get older. Grown-ups jump all over us when we are kids, but when we become full grown others our age just look at us and say, “He’s really set in his ways!” If our rituals are really extreme, they might say, “He’s nuts!”
Everyone has eccentricities, but for those of us with Asperger’s, those differences are a lot more pronounced. To get an official diagnosis, our behavioral aberrations have
to cause significant impairments in social, occupational, or other important areas of functioning. As a child, my Aspergian behavior kept me from making friends and held me back in school. Therefore, when I was eight, a psychologist would have said that I had the disability of Asperger’s. Later, my Aspergian brain helped me achieve unusual success in business and the creative arts. Today, I’m still Aspergian, but I am not disabled by any measure.
That’s a very important point. Asperger’s is a difference in our brains. It never goes away. However, as we get older and learn more skills, we can go from one extreme to the other—from disabled to gifted. That was hard for me to see at age sixteen, but it was obvious by age twenty-five. If you’re struggling with Asperger’s in middle school right now, no one can say how far you will go as an adult. All we can say is, life gets better for people like us. Often, a lot better. You may well surpass me in a few years. If you do, write a book so I can read how you did it.
Psychologists distinguish Asperger’s from other forms of autism by our language skills. Kids with Asperger’s learn to talk at the normal time, or even early. Most of us learn to say single words by age two, and we use phrases and simple sentences by age three. But that’s just the minimum—kids with Asperger’s often have unusually strong language skills, leading some people to call Asperger’s the little professor syndrome.
By contrast, people with traditional autism usually have trouble with language. As toddlers, they often don’t speak much, and if they do, they often have significant speech
impairments. Some kids overcome the impairments as they get older, but for others it’s a lifelong disability. It’s a mystery why most kids with autism have trouble with language, but we Aspergians are often the opposite, with exceptionally clear and precise speech.
One day soon, science may give us a lab test that identifies people with autism or Asperger’s. That would be great, because it would eliminate confusion and misdiagnosis, just the same way testing for blood type saves trouble in the hospital. But until then, we must rely on asking questions, making observations, and making a judgment based on experience.
J
ust the other day, a middle-aged fellow approached me and said, “I think I might have Asperger’s. Do you think there is any point to my getting tested, or am I too old?”
I looked at him as I pondered the true meaning of his question.
“You do look pretty old,” I said. “But I’ll bet you could still take a test. Maybe they even have a simplified version you could try.” I tried to look encouraging, but I’m not too good at stuff like that.
“That’s not what I meant,” he said quickly and with a hint of annoyance. “I was wondering if getting tested would serve any purpose!”
Now that his meaning was clear, I gave his new question more thought. Why do people get tested for neurological differences like Asperger’s or autism? Most testing is done on kids, for a variety of reasons. However, it all comes down to one thing: Knowledge is power.
Knowledge may also be scary, but it is absolutely empowering. Without it, there is just fumbling and guessing.
My own life has illustrated that clearly. For my first forty years I was unaware I had Asperger’s. I knew I was different, but I didn’t know why, and that lack of knowledge suffused me with a feeling of inferiority that permeated and poisoned my life. Those feelings handicapped and hampered me in countless ways.
Learning that I was a perfectly normal Aspergian male (and not a freak) was a revelation that changed my life. Actually, “changed” is too mild a term. Understanding of Asperger’s, and what flowed from it, turned my old life right on its ear and set me on a new and brighter path that I’m still following today.
If you are a teenager or even an adult who just feels different, the insight you can get from testing may be the best thing to ever happen to you. It can also be scary, but remember that whatever you learn about is already there, inside you. Self-knowledge can only be beneficial.
As for kids, they get tested when they don’t do what’s expected of them. For example, a tyke who doesn’t talk when grown-ups think he should gets tested. A kid who never looks at people gets tested. There is this presumption in our society that all kids should talk and look at people, and woe to the toddler who fails to comply. If you’re older and flunk out of school, you might get tested. If you don’t act like the other kids, you are probably going to get prodded and measured until someone puts a name to your differences.
Of course, most testing of kids is initiated by observant grown-ups. Kids do not start the process on their own. I have never once heard of a first grader saying, “Mommy, can you test me for neurological differences?” In fact, I think it would be nothing short of remarkable to hear a question like that from a kid, even in today’s enlightened times.
A six-year-old who gets tested probably can’t make use of the results on his own. They’ll be a big help to his parents and teachers, though, so the process is still important. A teenager is another matter. A fifteen-year-old can certainly take an Asperger diagnosis and run with it. He can read up on what it means and what he can do about it. A diagnosis can give a kid who wants to change his life a solid road map, and what better gift could there be?
There are some who dismiss the value of testing and diagnosis, saying, “Who cares?” Well, I speak from experience when I say I care. And many of my friends on the spectrum would say the same thing. There are others who say, “There’s no such thing as normal!” To them, every single kid has a diagnosis waiting to be found. I understand their point, but I can’t say I fully agree. If you are a person who struggles with some kind of disability, it’s better to know what you’re facing in the light than to struggle endlessly in the dark. Good test results can provide that illumination.
Psychologists believe that as many as twenty-five percent of the kids in our schools have some diagnosable disorder. Only a fraction of those kids get a diagnosis,
though, and of that group, only a few receive any therapy or treatment. So lots of kids slip through the cracks, many Aspergians among them.