My Lifelong Struggle With Asperger's Syndrome


How am I supposed to begin an article describing what it's like to be autistic?

I use the term "autistic" because, although I was officially diagnosed as a child with "high-functioning Asperger's Syndrome," the American Psychiatric Association recently voted to remove Asperger's Syndrome as a separate classification and instead place it under the broader diagnostic umbrella known as the "autism spectrum disorder." I'm writing this article because Adam Lanza — the mass murderer who killed 26 people at Sandy Hook Elementary school in Newtown, Connecticut, on Friday, — 20 of them children — has been reported to have had Asperger's Syndrome.

For the record, I have no idea whether those reports are true, and since none of us can know until more information comes out, I won't bother speculating. Instead, I want to shed light on what it's like to be high-functioning autistic — for the sake of convenience, I'm just going to continue calling it Asperger's — if for no other reason than to add an informed perspective to what is rapidly becoming the topic du jour in the news cycle.

So where do I start?

Let's begin with the most important point: Asperger's was not responsible for what Lanza did in Connecticut. Even if it turns out that Lanza was actually diagnosed with Asperger's — even if it is revealed that his struggles with Asperger's played a role in why he acted as he did — it will still remain true that Asperger's was not responsible for his actions. Asperger's causes obliviousness, not maliciousness. How you process the world around you is a result of your neural wiring and life experiences. Whether you choose to do good or evil is a product of your soul.

"How you process the world" is a key phrase here, because that's really what Asperger's boils down to. Although there is a great deal of variety in how it impacts different people, the common thread that binds those with Asperger's together is how our brains process social signals sent to us by other human beings. Experts have found that communication is only one-third verbal, with the two-thirds that are nonverbal including such diverse elements as body language, gesturing, tone of voice, and facial expression. For the vast majority of people, fluency in both these aspects of communication is so natural that they take it for granted, with a sizable chunk programmed into their instincts at birth and the rest being developed during their early years. Since Homo Sapiens are inherently social creatures, this is not only inevitability, but also an evolutionary necessity. If the average person wasn't able to confidently and competently engage in day-to-day social interactions — be they with family members, friends, romantic partners, professional colleagues, strangers, or anyone else — society wouldn't be able to function.

If you have Asperger's, however, the nonverbal aspects of communication do not come naturally to you. Although people with Asperger's are no more likely to have linguistic or cognitive difficulties than anyone else, we do not automatically process the thousands of ways people communicate nonverbally. As a result, we have enormous difficulty functioning in social situations, from abiding by the unspoken rules of etiquette (and there are so, so many) and gauging how to avoid dominating conversations to coming across as inappropriate or rude without intending to. If life in a society is a game (and make no mistake about it, it is), having Asperger's forces you to play while learning two-thirds of the rules as you go along, even as everyone else knows them instinctively ... and assumes you do too.

Frequently, though by no means always, people with Asperger's also develop heightened intellectual abilities and will focus with unusual intensity on a handful of very narrow subjects that interest them. While scientists are unclear as to why this characteristic exists among so many who have this condition, the correlation between this trait and Asperger's is undeniable. People may puzzle us, but absorbing, analyzing, and creatively applying facts and ideas comes comfortably. If nothing else, there are no unspoken rules that you're supposed to 'just know' when you enter the realm of words and information. Like a blind person who compensates by developing an unusually acute sense of hearing, it seems that many people with Asperger's retreat from what they can't understand by plunging into what they can.

I feel compelled to add here that Asperger's cannot be self-diagnosed. There are far too many people today who seize the mantles of well-known psychological conditions and apply them to themselves or their loved ones. Whether this is done to excuse bad behavior, wring sympathy from strangers and friends, or simply feel "special," the unavoidable reality is that no one can accurately diagnose you or anyone else with Asperger's except a licensed professional. To claim you or someone you know has it merely because you think you see some of the signs isn't just factually irresponsible, it's unethical. Life is hard enough for people struggling with any mental syndrome, be it a form of autism, ADD, OCD, bipolar disorder, schizophrenia, depression, or anything else. When others wrongly adopt these titles to gratify their egos or explain away their problems, they cheapen the suffering of those who genuinely struggle with these issues and empower skeptics who minimize or deny their existence.

So what is it like to actually have Asperger's?

This is where I hit a snag. You see, I can't answer that question for every person. Because it manifests itself so differently in each case, the best I can do is describe my own experiences and hope that fragment may at least partially epitomize the whole. Of course, this would require me to delve into specific incidents from my life, to dredge up memories of the countless occasions when I have been embarrassed, rejected, scorned, or in some other way hurt or ostracized. As a columnist and debater, I know that I can't present the strongest possible case here without including some of those personal stories. As a human being still waiting for past wounds to fully heal, I am flatly unwilling to pick at my scabs, public be damned.

You will have to settle for a compromise. I won't share my stories, but I will try to paint a general picture.

The defining characteristic of my childhood was my sense of being ineluctably "different." My interests were "weird," my personality was "weird," and not a day would pass without me discovering that I was completely wrong either in my assessment of the impression my words and actions were making on others or the signals they were sending of what they thought and how they felt about me. At first, I tried to overcome this and effectively socialize anyway; when that failed, I retreated, like so many others, into a world of books, with the library serving as my sanctuary. Being diagnosed with Asperger's undoubtedly changed this, since once I understood why I was struggling socially, I could make concerted efforts to improve my situation. I would ask people to let me know when I had made mistakes so that I could make a mental note to not repeat them. Instead of feeling hopelessly lost as I watched others "do their own thing" and get accepted while I did what came naturally to me and was not, I could make a point of determining what nonverbal cues were working for everyone else and emulate them myself. My hope was that, eventually, they would become as instinctive for me as they were for them.

That never happened. It is no easier for me today to "just know" how I'm coming off to others or what they think of me - to perform the rudimentary tasks necessary for any kind of socialization — than it was when I was a child. To this day it's still uncomfortable for me to make eye contact, to crack jokes, to engage in the back-and-forth of casual conversation, to display appropriate emotional responses, to forge meaningful connections. Few things are more awkward for someone with Asperger's than to be comfortable in her or his own skin when interacting with another person. What I have learned, though, is how to "fake it." The first step was seeking out the nonverbal cues, large and small, used by others in social situations; the second was mimicking them myself, even if it initially came across as stilted and forced; and finally, over time, I learned how to make it seem natural, like it sprang from an organic part of my character instead of years of meticulous training. Like someone learning how to drive a car, I gradually eased from carefully obsessing over each lesson in my head whenever I was behind the wheel to being able to get by with only casually reviewing them. Also like a driver, though, I know that I can never completely put those rules and lessons out of my head, no matter how comfortable or close I may feel around someone. If I forget to be mindful of the rules of the road — and I still do, even today — I crash.

I would write that Lanza crashed on Friday, except Asperger's (if he did indeed have it) was not his problem. For all of my struggles, there are far worse things in the world than to have an autistic spectrum disorder. We live in a world where entire global regions are devastated by the AIDS pandemic, where millions spend their days consumed by the thought of whether they'll ever have another meal, where having the wrong skin color or set of gentalia can condemn you to a life of persecution, where living on the wrong spot of the map can render you a meaningless statistic in the eyes of a warmonger who holds your life in his hands. Compared to these horrors, the hardships of Asperger's barely register as a twinge. Because so many have endured so much worse and not become monsters, a man with autism who reveals himself to be a monster would have been one even without it.