Hello, I’m Gwen Kansen and I have Asperger’s Syndrome.
I repeat myself a lot. If a room is crowded I try to get out immediately. It takes me longer than most people to do pretty much everything because I make slow transitions. But I’m fun at dive bars. I used to manage a vintage clothing store. You might not notice I’m weird right away.
Chances are you know a few people on the spectrum. We may not tell you because autism isn’t the sexiest mental problem out there, especially when compared to more easily romanticized mental illnesses like bipolar disorder. Here are few things you should know about us autistic folks:
1. You can look us in the eyes. Some autistic people don’t make eye contact. But many of us are perfectly comfortable with it. In fact, I did a study in college correlating a diagnostic autism scale with one of those read-the-feelings-in-the-eyes tests, and the person who got a perfect eye contact test score was the same one who scored highest on the autism scale. For the record, he was a good-looking 18-year-old boy and with plenty of friends.
2. We’re drawn to each other. I just started going to autism support groups because New York City is the most dismissive place on Earth. But, through the years, I’ve met a lot of other autistic people, including my college roommate and my ex. I can tell if someone has it right away and vice versa. It’s basically a self-preservation radar that tells us who we’re going to feel comfortable around.
I can spot that blank stare anywhere. Look at pictures of Andy Warhol and you’ll know what I mean. I also notice when someone keeps turning the conversation back to “Game of Thrones” after everyone else has already moved on to Belgian beer, doggy-style, people dancing on YouTube and Tetris.
Most of my friends don’t talk about it that much. People from the support group bring it up constantly, because it’s easy to see someone do something like talk loudly about gastrointestinal problems in a crowded restaurant and say, Oh yeah, she has Asperger’s. We also have our own jargon. We are “aspies” and you are “NTs.” But I never heard anyone use those terms until I went to meetings. The majority of us are trying not to be the sum of our faults, and that means avoiding dichotomies.
3. Everything’s a big deal to us. We sometimes seem childlike because everything is huge to us. I get along really well with bipolar people because both disorders involve seeing things in extreme ways. The difference is that bipolar people’s perceptions are based on their intense moods, whereas autistic people have a hard time making connections between actions and the concepts behind them. So, we grow up being constantly surprised. I’ve gotten better at predicting people’s behavior, but I’m still strongly affected by new information.
My ex was so amazed by a guy doing fire poi for 10 minutes outside a bar in St. Louis that he recognized him six months later at a McDonald’s in West Virginia. My roommate remembers secrets that an acquaintance told her in elementary school. Autistic people can be tremendously rewarding to talk to because we might make you feel like a star.
4. We DO understand what’s going on. We might not realize you’re annoyed with us right away. We might inadvertently blurt out something obnoxious. But often, we’re hyperaware of social cues because we’ve spent our lives compensating for not recognizing them as kids.
People try to talk over my head all the time. I don’t call them out on it because I’m not quite savvy enough to do so in a non-confrontational way. A 19-year-old kid who left his pot brownies in the dormitory microwave tried to convince me he was in a DC think tank. Maybe some people get off on people thinking that autism equates to naïvety, but to me it never stops being insulting.
5. We’re not always honest. Autistic people are capable of lying. I’m terrible at it, but others are pretty good. One of the best guys at a poker night I used to go to has Asperger’s. Some of us make up outrageous stories to make you think we’re more ambitious, like when a guy I know told people he was an Internet porn lord when he’s really just an obese, rich kid who sleeps until 4 p.m. and hangs out all night at Denny’s. Our motivations are no different than yours.
6. Autism can look like pretty much anything else. We’re inattentive, like people with ADD. We lionize and vilify others like people with borderline personality do. We can be paranoid about people’s intentions once we figure out that they aren’t always good. Some of us have single-minded obsessions. (Instead of train schedules and mathematical calculations like Rain Man, I’m obsessed with liberal politics, sex, and HBO shows.) Psychiatrists have misdiagnosed us for decades. Now they’re either getting better at it or the gene pool is getting worse because autism diagnoses have risen tremendously over the past few years.
7. We might show affection differently. One of the most common misconceptions about autism is that we don’t care about other people. That’s not true. We care as much as you do, but we don’t always show it in the same way. For instance, I had a non-autistic boyfriend who worked with people on the spectrum. He figured out I had it because I kept touching his eyes, ears and lips. I wasn’t thinking about it at the time, but now I realize that I’ve always had the urge to touch the delicate parts of someone’s face if I like them a lot. I’ll do it for half an hour if they let me.
My roommate used to stare at people a lot. She didn’t talk to anyone unless they put a laborious amount of effort into befriending her. But she would constantly watch people she liked and tell me all about them later.
8. We are not making excuses, but we don’t owe you explanations. Some people tell me I’m just looking for attention. Or they tell me they already knew, but then they still hold every awkward thing I do against me while reminding me at every given opportunity that I did it because I have Asperger’s.
The worst is when somebody gets mad at me for not warning them immediately so they can make preemptive determinations about how to treat me. My ex-boyfriend accused me of “leading him on” by being more engaging at the bar than I was able to be when he was with me all the time. A teacher basically demanded that I get special ed services even though I didn’t take up any more of her time than other students.
I am not proud to have autism. It’s not fun. I’ve spent the past couple of years trying to force myself to be “normal” in our fast-paced society and it’s killing me. Here’s a metaphor that might help you relate: Imagine yourself working 80 hours a week every week while being forced to listen to Chris Brown at full blast the whole time. Then imagine someone yelling at you because you don’t understand what they’re saying. Imagine watching other people hanging out together enjoying this lifestyle, and keeping you out of their 24-hour restorative spa with heated mud baths because you don’t.
If someone with autism feels comfortable enough with you to tell you what they’re going through, then just do what we’ve gotten pretty good at. Listen.
9. We have a tacit hierarchy. Marginalized groups pedestalize the members who are closest to the accepted standard. Like some gay people value “straight-acting” people and some people of color value lighter skin, people with the least obvious cases of autism know they’re at the top of the scale both within the community and within society.
We’re often harder on each other than you are on us. We fight about who is better socially. An autistic guy wouldn’t date me because I’m more noticeably autistic than he is. I just broke up with someone for the same reason. I’m ashamed to say that I’ve watched other autistic people with awkward gaits or no neurotypical friends and thought, At least I’m not that loser. Despite the positive aspects of autism- focus, intensity, perpetual sense of wonder, most of us very much want to be like you.
10. We are not all the same. You probably already knew this, but autism manifests differently in different people. Some of us may be more prone to sensory overload; some may be more obsessive; some may have more trouble reading nonverbal cues. Not every person with autism has every autistic trait. And of course, our goals, interests, and morals vary as much as yours do.
Remember that autism is a developmental disability. This is how our brains are wired, not a chemical imbalance. While we can’t be “fixed” with medication, we can develop new connections in our brains to make progress by ourselves over time. So, treat us like you treat everyone else. Don’t assume anything about us, but please be patient if we need you to explain things once in a while.