3 Things I Want Everyone to Know About Asperger’s Syndrome

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Matthew Rozsa shares his experience and perspective to help ‘neurotypicals’ understand high-functioning autism.

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I’ve periodically taken stabs at writing articles about what it’s like to experience life as a person with Asperger’s Syndrome.

More than a decade ag

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o, when I was still a teenager and almost no one I knew had even heard of it, I was officially diagnosed with high-functioning autism. Over the years, as awareness has spread, I’ve periodically taken stabs at writing articles about what it’s like to experience life as a person with Asperger’s Syndrome (known as high-functioning autism ever since the “Asperger” term was excised from official medical terminology in 2012), including pieces that have been published in Mic, Salon, and The Daily Dot. Even months after I’ve published them, they usually net me an email or two every few weeks. The worst are just annoying, usually people trying to indoctrinate me with the anti-vaccination pseudoscience (which prompted me to write this article with social pundit Liskula Cohen) or attempting to diagnose themselves with autism (which only a qualified medical professional can actually do—even though it’s considered a medical condition). Quite a few are interesting and helpful, though, particularly those from NTs (short for neurotypicals, a tongue-in-cheek term for people who aren’t on the autistic spectrum) who want to better understand Asperger’s Syndrome and other autistics curious about how their experiences compare to my own.

These are the kinds of things people with Asperger’s are often inclined to not discuss with other people, in large part because responses run the gamut from epistemological dismissal of psychology to incredibly awkward effusions of sympathy.

I decided it would be interesting to synthesize some common themes found in my conversations with others on the autism spectrum and further explore them. Since I always maintain the confidentiality of readers who contact me, I felt the best way to do this would be to talk to important people in my life and contextualize their observations about my behavior with my own memories. These are the kinds of things people with Asperger’s are often inclined to not discuss with other people, in large part because responses run the gamut from epistemological dismissal of psychology to incredibly awkward effusions of sympathy. After taking into account the unavoidable subjectivity and fallibility of everyone’s memories—friends, family members, ex-girlfriends, professional colleagues, and especially myself—I distilled the following:

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1. Being on the spectrum completely defines our relationships with other human beings.

One email—from my mother, of course, given the notorious parental penchant for dislodging uncomfortable childhood memories for their offspring (in her defense, I’d broached the subject for this article)—focused on an anecdote that epitomized the frustration of autism. “When Ed Rendell was running for governor in 2002,” she recalled, “he came to an event in downtown Easton … You were introduced to a number of people in the campaign and began a conversation with a young man who was working the venue for the campaign. After a few minutes it became clear from his body language that he had to move on but you just kept talking.” Later, when she pointed out that I’d been annoying the man, I responded with exasperation about having to be reminded yet again that “everyone else knows these rules of etiquette and how to socialize in these situations and I don’t.”

We aren’t simply missing occasional interpersonal cues or finding ourselves unaware of (or forgetting) certain unspoken social rules; we genuinely lack any intuitive understanding of nonverbal communication.

Apparently it had never occurred to her that, although everyone makes these kinds of mistakes, it’s particularly scarring to have it pointed out when you have Asperger’s Syndrome, because you do so far more often—and thus hear about it all the time (more on that in a moment). I can remember being rejected, encountering hostility, and constantly miscommunicating with others for as long as I’ve been forming memories. While these things happen to everyone, the difference for people with high-functioning autism is that we aren’t simply missing occasional interpersonal cues or finding ourselves unaware of (or forgetting) certain unspoken social rules; we genuinely lack any intuitive understanding of nonverbal communication. This makes it extremely difficult for us to ascertain what emotions and messages others try to relate to us—or, for that matter, how other people think and feel about us in general whenever that information is conveyed through facial expressions, body language, or tone of voice. Although many are able to compensate by developing exceptionally strong verbal skills, the other ways human beings send information and connect with each other are never natural for us … and it shapes every aspect of how we interact with other people.

 2. We are constantly self-aware of what we know—and don’t know—during social interactions.

There are plenty of neurotypicals with social anxiety; anything from childhood trauma to a range of mental illnesses can cause it. No two cases of social anxiety are ever exactly alike, but for almost everyone with Asperger’s, a key component to our social anxiety is the sense of isolation and uncertainty that comes with knowing we lack many of the tools for socialization others take for granted and will expect us to have.

For almost everyone with Asperger’s, a key component to our social anxiety is the sense of isolation and uncertainty that comes with knowing we lack many of the tools for socialization others take for granted and will expect us to have.

As my friend Rosalia observed, “sometimes you miss connections that other people see,” which can lead to serious misunderstandings that other people will interpret as insensitive, inappropriate, or even just abrasive and off-putting. One coping mechanism for dealing with this is to preemptively and directly address it from the beginning, which can come across as overly cautious. “My high school friend Jen H. made a similar point, noting in particular my tendency to “apologize a lot for things you shouldn’t be sorry for and worrying a lot about whether or not your actions or words among friends in casual social gatherings will be taken as offensive.” Another friend, Patrick, recalled that when I approached him about sharing a suite during our junior years as undergraduate at Bard College, “you prefaced your proposal by explaining what Asperger’s Syndrome was” so he could metabolize how I behaved. Alice, another friend from Bard College, echoed this in saying she was struck that I seemed diligent to be aware of having Asperger’s as a way of “ensuring other people felt comfortable with you.”

One trick we employ is to learn these social skills through study. Therapy definitely helps – particularly the tests you’re given that focus on recognizing facial expressions and sessions that focus on identifying patterns in common social gaffes—as does simple trial and error. Lessons that are initially implemented through constant internal reminders (maintaining eye contact, paying attention to specific facial muscles to gauge another party’s interest, recalling which specific subjects are considered taboo) can eventually become habitual. Over time, constructive criticism (or even the less benevolent kind) becomes not only palatable, but an eagerly sought translator for a foreign language in which you need to become, if not fluent, then at least proficient.

3. There are advantages.

One word that’s often used to describe high-functioning autistics—intense—is as much a positive as a negative. “I see a lot of knowledge in great detail in what you know,” Jonathan, a friend from high school, pointed out, “I don’t want to compare it to ADD, but there is a lot of learning from both ends.” When you have Asperger’s, it’s like being clinically guaranteed to fit Simon Pegg’s definition of geek:

Being a geek is all about being honest about what you enjoy and not being afraid to demonstrate that affection. It means never having to play it cool about how much you like something. It’s basically a license to proudly emote on a somewhat childish level rather than behave like a supposed adult. Being a geek is extremely liberating.

Needless to say, this gives you amazing opportunities to forge deeply meaningful relationships with others who share your passion. For all the memories that sting—having no one to talk to in elementary school because of my esoteric interests, getting fired from job after job in high school because customers complained that I was “odd,” the ex-girlfriend who broke up with me because she found my need for a structured daily routine and active work schedule “unnerving”—there have been plenty of special friendships and romantic relationships that were forged because of those exact same qualities.

Sometimes starting out a little farther behind teaches you how to work as hard as you need to get where you need to go.

There is also the convenient fact that we live in a “geek is chic” culture, one in which you can make a career out of extremely specialized areas of interest. In my case, a lifelong fascination with history and politics has landed me in a PhD program with side careers in local politics and as a freelance writer (hence why you’re reading this article now). Even if one doesn’t agree with the scholars who try to retroactively diagnose men like Thomas Jefferson and Bill Gates with Asperger’s Syndrome, the fact is that the intellectual passions that helped them succeed are assets in the information age, regardless of whether they stem from Asperger’s Syndrome or other cognitive soil.

If nothing else, Asperger’s gave me one extra advantage: Twelve years after the incident with the Rendell campaign, when I worked as a county organizer for Tom Wolf’s campaign for governor of Pennsylvania, my boss Julie observed that I “had an incredible awareness of your challenges and tried very hard to compensate for them.” Sometimes starting out a little farther behind teaches you how to work as hard as you need to get where you need to go.

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Remember that what might seem arrogant, inconsiderate, or annoying may simply be social tics and not what they’re actually intending to say.

So where does this all lead? If you’re a neurotypical, the best way of dealing with a high-functioning autistic person is to verbalize as much as possible in a clear and straightforward manner. Imagine all the social interactions you perform every day through body language or facial expression and, when you want to communicate to someone with Asperger’s Syndrome in a way that would normally require interpreting those signals, find ways to articulate your thoughts and feelings instead. Also remember that what might seem arrogant, inconsiderate, or annoying may simply be social tics and not what they’re actually intending to say.

For other high-functioning autistics like me, the main struggle is to learn through study and practice what other people know instinctively. At the same time, we should be encouraged by the increasing attention being given to autism in popular culture through celebrities relating to the condition (whether diagnostically accurate or otherwise) and TV shows like Parenthood and Sherlock, as well as the obvious strides that have been made in how our education and health care systems assist those who have it. In a sense, it is the same basic lesson that applies to anybody who feels inescapably different from the rest of the world: Own the things that make you different instead of letting them own you.

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