And dinosaurs weren’t the only things I decided to be leery of. Everywhere I looked, there were threats. The kids around me were unpredictable. Teachers were just waiting to pounce on me, and punish me for fun. Strangers were worse—they lurked outside the school, waiting to kidnap unwary kids. Whom could I trust? It seemed like my parents were safe, and maybe a few kids, but that was about it.
With all that, you might think I was a scared little kid, but I really wasn’t. I was just cautious. Cautious and wary. And prepared.
I don’t fear monsters anymore. Even if Nessie is real, she’s not going to get me in Amherst, Massachusetts, ninety miles from the ocean. Yet my fear of covering my head with blankets seemed so rational and sensible that I carried it into adulthood. I actually stopped thinking of my wariness to put my head under the covers as a fear. It was like jumping off a bridge—something you just don’t do.
I was firm in that belief until I got into an innocent conversation with my friend Diane. We were talking about wintertime when she said, “I like to get completely under the covers where it’s nice and warm. I pull the blankets right over my head!” I was shocked to hear that. Maybe an ignorant child would do such a thing, but her? Even as an adult, I am always aware of the dangers of insufficient oxygen. I looked at her as she uttered that amazing and reckless statement. She doesn’t look brain damaged.…
I broached the subject gently. “Aren’t you afraid of suffocating with a blanket on your head?” She looked at me like I was nuts. “No,” she said, in that firm voice teenagers use when addressing total fools.
“Aren’t you worried that there won’t be enough fresh air under the blanket?” I persisted even though her obvious dismissal of my idea made me think there just might be a flaw in my reasoning. She is a grown-up, after all, so it didn’t kill her. And she raised three kids that I know of, and none of them suffocated … or did they? Maybe she started with five and these three are all that’s left.…
When Diane challenged me, self-doubt arrived like a bolt out of the blue. I had not thought about heads and blankets in years—I just didn’t do it—but I began thinking about it then, quickly and quietly.
Have I ever heard of anyone suffocating under a blanket? I’ve never heard of one, but maybe they call it crib death or something innocuous. How well do the gases in the air mix through a blanket? I don’t know. The warmer it is under the blanket, the less the air is diffusing through the covers, and the more dangerous it must be. A blanket over the head is surely different from a plastic bag over the head. Yes …
I decided to be cautious. “I don’t know how safe hiding your head under a blanket is. There’s more than the risk of suffocation. If the house caught fire you might not see or smell it until too late—” I began elaborating my reasons, but she interrupted me. “You have a lot of irrational fears,” she said. I immediately thought of my fear of heights and edges. Were my fears really irrational? I was shocked, because her comment wasn’t nasty or condescending. It was just matter-of-fact. She was suggesting that the irrationality of my fears must be obvious to everyone. Could that be true?
Diane’s view was clear, but I wasn’t convinced. I’ve always been a firm believer in that old adage Just because you’re paranoid doesn’t mean they aren’t out to get you. To me, my fears were well thought through and reasonable.
I took a moment to ponder my fear of edges. I am wary of getting too close to the edge when I’m on top of a building or at a cliff side while hiking. Edges can crumble, and I don’t want to be standing on them when they do. If you doubt that for a moment, ask yourself where the talus pile at the base of any cliff comes from. The dictionary definition says it all: “A talus is a sloping mass of rocky fragments that has fallen from a cliff.” And when it comes to tall buildings … they may not crumble, but microbursts and strong air currents are ever-present dangers. The same air currents that launch a hang glider could launch me, if they came at the wrong moment.
“I don’t think my fear of edges is irrational,” I began, but I guess she could hear the hesitation in my voice. “Okay,” she said, “the edge can crumble and wind can sweep you off, but the chance of that is so remote, it’s still irrational.”
All I could think of was, Not to me, it’s not. I reminded her that hikers found bodies at the base of the cliffs at Mount Tom—a popular local hiking spot—with some regularity. They had to get there somehow. Either the edge crumbled, or winds came, or the people just got dizzy. Or maybe they got pushed. However it happened, if they had stayed a little farther from the edge, most of them would still be alive today.
And I wasn’t ready to give up on putting my head under the blanket, either. “Maybe you have been fine under light blankets,” I conceded. The emphasis was on the “have been.” “But with heavier blankets there’s got to come a point where you suffer lack of oxygen.” Visions of people swaddled in those heavy felt mats movers use flitted through my mind. She didn’t say much, but I could see she remained unconvinced. I am sure she will continue to put her head under the blanket in the future, and I just hope she survives undamaged.
So that’s where we left it. Diane thinks I have irrational fears. I think I am reasonably well read, logical, and cautious.
All my friends agree about this: If they had to be marooned somewhere—in the woods or on a mountain—I’d be a top choice to accompany them. Because I am always prepared, and I think of all the risks.
Part 2
Emotions
One of the most important keys to getting along in society is the ability to read the nonverbal signals from the people around us … interpreting other people’s body language, discerning their facial expressions, recognizing angry or eager or anxious or loving gazes.
I always knew spoken words meant something, and I always heard what people said. My hearing was excellent. But I also figured out early on that words alone often failed to tell the whole story in social situations. As a teenager, I knew I was missing something important, but what was it?
Figuring out what you don’t know is very difficult. That’s particularly true if you grow up like me—with both me and those around me unaware that I perceived the world differently from everyone else.
Follow me through these stories as I begin to find out what I was missing.
(Not) Reading People
When I was a toddler in my mother’s family home in Cairo, Georgia, my grandmother would pick me up and make faces at me. I didn’t know that lots of grown-ups do that to babies. How could I? One of the fundamental limitations of babyhood is that you have no life experience with which to put other people’s actions into context. So I wasn’t sure what to make of her when she picked me up and stuck her face close to mine. Mostly, she seemed monstrous and large. The faces she made were like a circus clown’s—all exaggerated and weird. I stared back, more puzzled and worried with each strange face she made. Was it funny? Was it dangerous? I could never tell. Finally, she’d had enough. “Why won’t you smile at me? You’re just a mean little boy!” And with that, my grandma Richter plopped me down on my stubby feet and marched away on her own stumpy legs.
I was not able to fully grasp what had just happened, but I got the message that she didn’t like me very much. I sat back down and returned to my blocks. A little bit sad. A little bit puzzled. Eager to return to the comfort of my imaginary wooden-block world where strange and scary grown-ups did not suddenly appear out of nowhere to pick me up and menace me.
As I got older, I encountered a steady stream of people who’d make “faces” at me and expect some kind of response. People would approach me with big smiles and a hand held out. Who were they? What did they want? They often looked offended when I just stared, and things really got strange if I turned and ran. Other times, people pretended to be crying. They often made snuffling noises, too. Were they hoping I’d give them candy or something to drink out of sympathy? Were they really upset, or just pretending? A crying kid with a bloody knee made sense. A crying grown-up wit
h no visible damage, who knew what that meant?
I never knew what to make of people like that, so I just stared. And it almost always ended badly, with accusations like “What’s the matter with you?” or “Don’t you care?” How could I care? I had no idea what was going on!
I could never discern anything the matter with me. In fact, I never started those exchanges. It was always other people who approached me and made strange faces or gestures, and then criticized me for not doing what they expected. If they planned to criticize me for not responding to them, why didn’t they just leave me alone? There I was, minding my own business, and they came and poked at me and called me names. Sometimes I felt like I was in a cage at the zoo, with nasty people jabbing sharp sticks through the bars.
I didn’t figure out why my reactions always seemed to be out of sync with what others expected until I began studying Asperger’s and autism later in life.
Then I learned that we have to go way back, to when we were babies, to find the root of the problem. When a mother smiles at her baby, she may not say anything in words, but her expression sends a powerful message. The baby’s brain sees the smile, and, without any conscious thought, the baby’s brain makes him smile right back. At the same time, his brain tells him to feel happy, because he’s smiling.
My nursery school teacher used to say the same thing: “If you make a happy face, you’ll feel good. If you make a frown, you’ll be sad.” To my surprise, it’s true. Aspergian or nypical, our emotions can be triggered by physical actions. For those of us with Asperger’s, it’s getting us to smile or frown in the first place that’s the problem.
We see the smile, just like every other kid. After all, there’s nothing wrong with my eyes. The difference is, our brains don’t respond to a smile the same way as everyone else’s. We Aspergians just don’t have that instinctive smile-when-smiled-at response. In some of us, it’s totally lacking. In others, it works but is somewhat impaired or slow. I am somewhere in the middle of the range. If you persist in making a face at me, I will eventually respond. But it will take me a while. And if your expression is subtle, the way it often is between grown-ups, I may not respond at all.
Because of my smile-reflex weakness, my ability to feel happiness when you look at me is weak, too. That can be both a blessing and a curse, depending on the circumstance.
I’ve known for a while I was that way, but until lately I had no idea why. Recently, though, scientists have begun to discover fascinating things about the autistic brain, and why it is that some of us lack the smile-when-smiled-at instinct.
Turns out, everyone has brain cells called mirror neurons that “act out” what we see in other people. When we see someone smile or frown, our mirror neurons make a smile or frown in our own brain, and that puts a smile or frown on our face. Seeing it makes us do it and feel it. Scientists think that cycle is the foundation for empathy—the ability to put yourself in the other person’s shoes and understand how he feels, instinctually.
It’s remarkable that we have brain cells that evolved specifically for that task, but it’s true. And the neurons don’t respond just to sight. Mirror neurons can act out feelings that come from sounds, smells, and who knows what else. It’s incredibly complex, and it’s kind of neat.
People with autism have mirror neurons just like nypicals, but in us it’s like the volume is turned down. A big smile on your face makes a tiny grin on mine. So I respond, but sometimes the response is so small and weak you can’t even see it. Most people with Asperger’s seem to react like me—weakly. Like with everything else, though, there’s a range. Some people are a bit better than I, while a few are a whole lot worse.
What does having weak mirror neurons mean for Aspergians long term?
I’ve thought about that question a whole lot. I think that it means it’s tough for us to develop a sense of other people’s realities, to understand that they have their own thoughts and emotions that are separate from ours. We are not good at putting ourselves in other people’s shoes. We don’t even see the shoes, figuratively speaking.
When I was a toddler, I got sad and happy and frustrated all by myself. I ate something and it tasted good, so I felt happy and content and fed. I fell and hurt my knee, and cried like the world was about to end, especially if I saw a spot of red blood. I grabbed a shiny new toy and played with it, and it made me happy again. I got stuck in my high chair, and I became frustrated beyond belief as the world passed me by, and I yelled as loudly as I could.
All those feelings originated inside me. No one else gave them to me. The saying “Kids are the center of their own universe” is particularly true for those of us with autism or Asperger’s. I was the sun, and my parents and teachers and other kids were all planets, revolving around me. As far as I knew, all thoughts and feelings emanated from me. At least they were supposed to.
How could I know otherwise? Kids who are not autistic feel what others feel by simply looking at them. I could not do that, so I lived in an emotional vacuum, a void that was crossed only by the most extreme emotions, like those of an enraged teacher or an angry parent.
I was made painfully aware that other people had ideas that differed from mine every time I got shaken or spanked because a grown-up had a different notion of what I should or shouldn’t do, or when people got mad at me because I didn’t respond to their funny faces. I always knew that something had gone terribly wrong in those interactions, but I never knew what or why.
All that time, people were trying to share their feelings with me, but I didn’t get their signals. I had no idea. Neither did they.
My inability to read other people’s feelings kept me from developing a good sense of “me” and “you,” and our relative place in the world. As a toddler, if I could not sense your feelings, how could I know you had any? The simple answer is, I couldn’t. That caused me no end of trouble with other kids. If I was playing with Lincoln Logs, and you came up and showed me a truck, I’d say, “No! Lincoln Logs! No trucks!” I said that because I was thinking about logs and it just didn’t occur to me that you might have your own thoughts and want to play with a truck.
When my grandmother picked me up and made faces at me, I didn’t get the signals she was sending. After a few tries, she got frustrated and gave up on me. I may not have understood her facial expression, but I got the message right away when she dumped me on the ground and stomped off—I was a bad kid. Scenes like that set the stage for a lifetime of poor self-image.
Eventually, I figured out that other people had their own independent thoughts, but the Asperger’s still made it hard for me to read them, so I was always a few years behind my peers. Asperger kids today still face that problem, but if grown-ups are aware, they can do a whole lot to help by explaining what the kids are missing. That’s so important—that and not condemning the kids for something they don’t even understand.
I explained what others were thinking and feeling to my Aspergian son, and it worked. I wish people had known to do that for me when I was little.
“Don’t worry, he doesn’t even notice” was a common refrain when people talked behind my back. Well, let me assure you, I may not have been able to read from people’s subtle clues their thoughts and feelings, or their expectations of me, but I absolutely noticed when they rejected or disregarded me, and I still do. I may seem robotic and mechanical sometimes, but there is nothing mechanical or cold about my internal feelings. I am just as sensitive as anyone to snide remarks and criticism. I cried inside fifty years ago, and I still do today.
What Is Love?
Today, some researchers wonder if weak mirroring keeps people on the spectrum from forming strong bonds with their parents. I don’t think that’s true. I’m absolutely positive that I formed a bond with my parents even though I often misunderstood their expressions and their requests of me. If my life is any guide, long experience with someone forms a very good bond even if the mirroring instincts are weak. I can certainly see someone’s actions ove
r a period of time, and I will come to care for that person in response to how he or she acts toward me.
However, even if I’m willing to wait patiently for bonds to form, those around me without Asperger’s may not be. They are wired to look for signals of affection from me, and when none are forthcoming, they get anxious. It’s an automatic and unconscious thing. I hear about that whenever I speak to parent groups.
Parents ask questions like “Why doesn’t my son ever say he loves me?” The first time I heard that, I thought back to my childhood and my mother putting me to bed. She’d say, “I love you,” and then abandon me to the unseen terrors of my nighttime bedroom. To the toddler-sized me, that phrase didn’t have a very good connotation. Grown-ups expected me to figure out the meaning of their words, separate from the actions that inevitably followed. Well, I never did.
That’s not to say I didn’t love my parents. But what is love? What I felt was not something I could express in words as a little kid. I looked to them for sustenance, protection, and answers to any of life’s questions. Like all kids, I was totally dependent on Mom and Dad, and I knew it. I trusted them to take care of me.
Yet I also feared them, especially my father when he flew into drunken rages. I felt many things about my parents at different times, and I guess the sum total was what you call love. For the most part, my relationship with them just rolled and bumped along. They didn’t do much to elicit strong positive feelings in me, whereas they did quite a bit to elicit rage and resentment. Was that love, too?
Be Different Page 6