All people with autism have some kind of communication impairment. “Traditional” autistic people have trouble understanding or speaking language. If you can’t talk, or understand others, you are indeed going to be disabled in our society. The degree of impairment can vary greatly, with some autistic people totally devoid of speech and others affected in less substantial ways.
Autistic people can also have impairment in the ability to read nonverbal signals from others. That’s the kind of autism I have; it’s what most people with Asperger’s are touched with. The stories in this book describe the ways in which I minimized the harm my communication impairment caused me, while finding the gifts it conferred.
Autism in its many forms is not a disease. It’s a way of being that comes from this nonstandard wiring in the brain. The latest science suggests we’re most likely born different, or else we become autistic early in infancy. We don’t develop Asperger’s as teenagers; life on the autism spectrum is the only life we’ve ever known. We will always be perplexed when we gaze at people who aren’t on the spectrum, and they will always struggle to understand our unconventional way of thinking.
Subtle brain differences often cause people like me to respond differently—strangely even—to common life situations. Most of us have a hard time with social situations; some of us feel downright crippled. We get frustrated because we’re so good at some things, while being completely inept at others. There’s just no balance. It’s a very difficult way to live, because our strengths seem to contrast so sharply with our weaknesses. “You read so well, and you’re so smart! I can’t believe you can’t do what I told you. You must be faking!” I heard that a lot as a kid.
Some people with autism are noticeably disabled. A person who can’t talk, for example, cries out for compassion. Those of us with Asperger’s are tougher to pick out. The hardest thing about having Asperger’s is that we don’t look any different from anyone else on the outside. So why would anyone suspect that we are different on the inside? When I was a kid, no one had any knowledge of how my brain was wired, including me. Consequently, society wrote me off as defective along with millions of other “different” and “difficult” children. My strange behavior was described as “bad” instead of being seen for what it was—the innocent result of neurological difference.
Today most kids are diagnosed earlier than I was, but still, for many of us, knowledge of Asperger’s starts with some kind of failure. Most kids get diagnosed with Asperger’s after failing at some aspect of school, and their behavior has brought them to the attention of the little men in suits who give tests.
I may not have been tested in school, but the differences in me were still obvious. I could not make friends, I acted strange, and I flunked all my courses. Back then, people said I was just a bad kid, but today we see problems like mine as evidence of disability, and, as a society, we supply help, not punishment. At least, that’s how it’s supposed to work.
Today, many geeks, scientists, and other creative geniuses are said to have Asperger’s. But to some of us, the phrase “have Asperger’s” is misleading because it makes Asperger’s sound like a disease or an injury. You say, “I have a cold” or “I’ve got a broken leg.” Saying you “have” something implies that it’s temporary and undesirable. Asperger’s isn’t like that. You’ve been Aspergian as long as you can remember, and you’ll be that way all your life. It’s a way of being, not a disease.
That’s why I say, “I am a person with Asperger’s.”
Many of us shorten this by saying we’re Aspergians, or Aspies. I think that’s more appropriate than saying, “We have Asperger’s.” There’s no right or wrong—you can say whatever you want, or say nothing at all. Whatever you choose, you’re in good company. Bill Gates is said to be Aspergian. Musician Glenn Gould is said to have been Aspergian, along with scientist Albert Einstein, actor Dan Aykroyd, writer Isaac Asimov, and movie director Alfred Hitchcock. As adults, none of those people would be described as disabled, but they were certainly eccentric and different.
If everyone with Asperger’s achieved a high level of success, no one would call it a disability. Unfortunately, those people are the exceptions, not the rule. Most Aspergians struggle with school, relationships, and jobs because their social skills are poor and they can’t seem to fit in. It’s all too easy to end up alone, alienated, and unemployed. That’s what life was like for me before I learned how to work with my differences, overcome them, and sometimes exploit them. As I have gotten older, I have come to appreciate how my differences have turned out also to include gifts that have set me apart. One of my main goals in life today is to help young people avoid some of the traps I fell into. We should all be given a chance to succeed.
There’s a lot more to this story than simple disability.
The Three Categories: Aspergian, Proto-Aspergian, and Nypical
Sometimes people say, “I see myself in your stories, but I don’t have an Asperger diagnosis. Why is that?” Well, I have my theories.…
As we now know, Asperger’s is part of a broad spectrum of human behavior, with extremely disabled autistic people at one end and the teeming mass of undiagnosed humanity at the other. All of us fall somewhere on this imaginary behavioral continuum. In fact, it seems to me that there are really only three kinds of people in the world, each grouped on a different arc of the spectrum.
First are those of us with an autism or Asperger diagnosis. At a little over one percent of the population, we are the smallest group, but we are special and attract notice far beyond what our numbers would suggest. We’re the ones who are officially “on the autism spectrum,” and there is tremendous variation among us. Some of us can’t function without assistance, while others are incredibly gifted. Taken together, we may not seem like we have a single thing in common, but we do—we share subtle structural differences in our brains that make us autistic.
I call the next group proto-Aspergians. These are people with plenty of Asperger quirks but not too many disabilities. They’re different and eccentric, but most of them blend into society a bit more smoothly than we full-blooded Aspergians do. There are quite a few proto-Aspergians out there—perhaps as much as five percent of the population. Lots of engineers, scientists, geeks, and common nerds are in this category—that is, unless they qualify for the Diagnosis to put them in the first group. Many are blessed with above-average intelligence, and most are pretty functional. Some people say the proto-Aspergians are the ones who were born with all the benefits of Asperger’s without any of the bad stuff. Perhaps that’s true.
Proto-Aspergians are also called geeks or nerds. Every school has a bunch—the people with lots of Asperger-like traits but not so many as to be labeled. Some proto-Aspergians have alternate diagnoses, like ADHD. Others are just eccentric. They populate the Math Club, the computer room, the Science Fiction Society, and other such places. As grown-ups, they can be found in technology companies, universities, online gaming groups, and even car-repair shops like mine. They are everywhere. Who knows—you may be one of them. I didn’t learn about Asperger’s until I was forty years old, but I knew about geeks right from the beginning. Geeks have always been around.
The third group contains everyone else. But what should we call them? If people with Asperger’s are called Aspergians or Aspies, it makes sense that we would need a special name for people who don’t have Asperger’s and aren’t proto-Aspergian. “People who don’t have Asperger’s” sounds pretty clumsy when you say it too often. “Everyone else” is too vague. You might think the correct word would be “normal,” but we’ve all heard the psychologist’s pronouncement “There is no such thing as normal.”
Professionals have coined the word “neurotypical” to describe any human who does not have some form of autism. “Neurotypical” has been in use for a number of years, but I’ve never liked it. Try it yourself. Say it in front of a mirror and watch your mouth. It’s like you’re chewing something just to spit the syllables out. It
’s so clinical—you can almost smell the doctor’s office when you say it.
“Neurotypical” is the kind of word you hear in science fiction movies, when they select the specimens for dissection. I wanted a friendlier word, something that didn’t remind me of tongue depressors and needles. I wanted a word I wouldn’t stumble over if I said it late at night. So I made my own contraction, “nypical.”
That’s right. Nypical. Pronounced NIP-ick-al. Now you say it.
The word rhymes with “typical.” In fact, you could use the words together. As in, “You’re a typical nypical!”
So welcome to nypicality, in all of its wondrous variation. And if you are a nypical … get used to it. Now you too have a label to live with.
And it’s not all bad. As a nypical, you are part of the majority. And what a majority it is! When we have a majority in political elections, the winner’s share of the vote is fifty-five percent. When the share reaches seventy-five percent, it’s called a landslide. The share of nypicality is more than ninety-four percent. What more could you ask for?
If you can’t be a proud Aspergian, it’s the next best thing to be … a nypical.
And there you have it. The three kinds of humanity: people on the spectrum, proto-Aspergians, and the nypical masses. Everyone fits into one of those three groups. Which one is right for you?
Finding Your Path to “Fitting In”
Those of us with Asperger’s will always have different brains, but I firmly believe that different does not have to mean disabled. Many Aspergians—me included—were somewhat disabled as children, but with a strategy, hard work, determination, and the acquisition of hard-won wisdom, we overcame our disabilities to emerge as successful and capable adults. My own life story illustrates that clearly.
When I was young, I could not make friends. I couldn’t play in groups. At school, I didn’t do assignments the way I was told, and I ended up flunking out. I became a juvenile delinquent. Those are all signs of failure. That’s what psychologists look for when deciding if you have a disability. If you’re eccentric or even weird, but you’re not failing at work or in your personal life, you are not disabled. You’re just different. It’s only when you fail at some key thing—as I did—that you become “officially” disabled. In my case, the disability was a result of my Asperger’s. My different brain just would not permit me to conform to the mold my teachers and other kids wanted to stuff me into.
In many ways, my Asperger’s set me up for failure in my early years. Luckily, the state of failure wasn’t permanent. I wanted to fit in and succeed, and I worked hard to learn to get along. I taught myself the basics of reading other people. I learned how to divine what people expected of me, and I learned how to deliver on that while still staying true to my own beliefs.
My strategy worked. Today, I’m quite successful, and the same Asperger traits that made me a failure as a kid have played a large part in facilitating my success as an adult. The brain differences that made it difficult for me to interact with people actually helped me to concentrate on other things, like machines. That concentration led me to develop abilities with machines that others don’t have, and I’ve been very successful in using those skills to advance my career. That’s really a good example of how something that seems like a pure disability can actually have components of a gift, too. That was true for me, and it can be true for you, too.
I sure wish someone could have told me that when I was in fourth grade. Back then, schools didn’t even know what Asperger’s was, let alone what to do for a kid who had it. The whole concept of special education and accommodations was just emerging. Even today, few people can chart a path from failure to success for an Aspergian child. That’s why I wrote this book—to show the steps that took me from being a floundering ten-year-old to a successful adult.
The brain differences that make us Aspergian never go away, but we can learn two important things: how to play to our strengths and what to do to fit in with society. Both those skills will lead to a vastly improved quality of life. Actually, you could say every human has to learn those same things, but it’s more critical for those of us who are what you might call “nonstandard.” For us, learning is not as instinctive and easy as we might wish.
Learning how to fit in does not change any of the Aspergian qualities of our brains. If at age ten you have the unique ability to tell someone what day of the week he was born on, you’ll probably still have that ability at age thirty. The difference is, if you learned to fit in, you’ll probably have a lot more friends when you’re older, and the world will see you in a different light because you relate to others better. That, at least, is the goal.
Psychologists lump all that practice and knowledge under the heading “social skills.” Whatever you call it, learning how to get along with other people is vital for our own success and happiness. There’s even a fancy psychological theory for that. It’s called the “competence-deviance hypothesis.” Here’s what it says:
When you are young, you have not yet made a reputation in your community. You’re an unknown quantity. If you act strange, people will be very wary because they don’t know what to make of you. They’ll be quick to assume you belong in a cage, under restraint. Later in life, once you build a reputation for competence, the same strange behavior will be dismissed as harmless eccentricity. So the stuff that gets you chased out of town at sixteen gets laughed off at forty-six. In adulthood, the focus shifts from superficial attributes to your actual accomplishments. That’s a much better place for an Aspergian, because our sharply focused intelligence often gives us special abilities.
I have certainly seen that in my own life. People today ask me questions about a wide range of topics, and they take my answers quite seriously. Twenty years ago, most people would not consider my opinion at all, and if I voiced one anyway, they’d say, “You’re nuts!” The difference between then and now—as best I can tell—is that I have established a name for myself; I have demonstrated my competence to the world, and I am therefore credible. There’s another important difference: I learned to get along with other people. The quality of my thought at age thirty or even at age fifteen was not one bit lower, but no one knew who I was. I didn’t get any smarter, but I grew and changed in other ways, and that’s what made the difference.
Distilled down to one sentence, you can say: Competence excuses strange behavior. That’s a very important point for those of us on the spectrum, because our special interests can make us extremely competent in whatever we find fascinating. At the same time, our Asperger’s often makes us look pretty strange to outsiders.
Some of the changes that help us fit in better occur naturally as we get older. That’s the nature of Asperger’s—it produces what psychologists call “developmental delays.” We’re slow to pick up some social skills, and we’ll never be perfect at using them, but most of us can learn enough to get by. While all of us grow and develop our entire lives, the pace of development slows down for most people in the late teen years. That’s when those of us with Asperger’s get our chance to catch up. Catching up may be a lot of work, but with sufficient focus and resolve, it can be done. So a kid whose social skills were way behind his peers in seventh grade may end up being just a little eccentric in college, and downright popular in middle age.
Always keep this point in mind: the word “delay” means what it says: late. Delayed isn’t never, no matter how much it may feel like that at age fifteen or even twenty-five.
When we do finally start catching up it makes us feel good. We feel successful. At the same time, we may be at an age when we are beginning to discover some of our Aspergian gifts. And let’s be clear about something—we all have these gifts. I don’t mean we’re all geniuses; I simply mean that each of us has something he or she is particularly good at. Depression and attitude can rob us of the ability to see our gifts, but they absolutely reside in all of us. Since we Aspergians think differently, we’re likely to have special or unusual skills, and it??
?s important to find them.
When we discover and build upon our gifts it spurs positive feelings in us and those around us, and those feelings go a long way toward dissipating the burden of failure that many young Aspergians carry as kids. That alone will make us more successful, because positive attitudes translate to positive results. Success breeds success, just as failure breeds failure. When we feel successful we’re less likely to melt down or lash out at other people, and we get along better socially. As we make friends we become happier, and it starts a cycle of positive reinforcement. I think that’s a key factor to help us avoid slipping into depression.
When we get older, we acquire more knowledge and our ability to understand abstract concepts improves. Few six-year-olds understand the concept of a neurological difference, but at sixteen, most can get it. If my own life is any guide, understanding how and why we are different is essential to knowing how we need to change for a better life. That understanding comes with increased maturity.
In my experience, that is the path from disabled to gifted. You learn social skills. You find life and work settings that minimize your weaknesses, and you discover your strengths and play to them. It sounds easy, set out like that, but it entails a huge amount of work. It’s been a lifetime job for me, but the results are worth it all.
I hope my stories will give you some ideas.
Part 1
Rituals, Manners, and Quirks
One of the things you hear about often, when you learn about Asperger’s and autism, is that we have “restricted and repetitive patterns of behavior and interests.” If you’re new to this world, you probably wonder what that phrase means.