I’ll start by saying that not everything about ASD is negative for me, in fact there are some fairly large positives. Flow is easy to achieve - I can laser focus on interesting tasks for hours at a time, and I know this is one of the reasons I’ve been able to accomplish all I have. I am able to say what needs to be said in situations where others aren’t, which has turned out to be useful many times over the years. And because I see the world in a very black-and-white manner without many shades of grey, friends often ask me for help when they are in emotionally clouded situations. As Scatman John so eloquently put it, “the stutter and the scat is the same thing.” But the focus of this post is on the challenges faced by people with ASD, so let’s get to it...
I was diagnosed relatively recently so I haven’t always known I had ASD, but I have always known I was “different”. As a kid I found it strange that somehow it was considered bad to eat the same food for weeks or months in a row. I never wanted to go to parties, dances, or social events. I vastly preferred animals to people. I read constantly, even during meals or family time. Hardly anybody got my jokes. I couldn’t really talk to people my own age because they were boring, so I always talked to adults. At an after-school program when I was in 4th grade, rather than play with the other kids, I made friends with the janitor because he had a cool mop with a wide, swiveling head; he eventually let me use the shop-vac and the gym floor waxer. When my parents found out I was hanging out with him every day, they had a long talk with him (which I didn’t understand at the time).
As someone with ASD, I have difficulty recognizing and interpreting the social cues humans use in everyday interaction such as flirtation, feeling the natural end of a conversation, or the situational appropriateness of comments (both from myself and others). The unwritten rules of normal socializing and conversation are, in my case, unknown rules. I might make inappropriate statements or laugh at inappropriate times, and if that happens I won’t know until I’m told. I have to rely on other people for clues to which subjects are appropriate: if somebody brings up a topic in conversation, I surmise the subject is acceptable to them in that setting. That is not always accurate, but I have nothing else to go on. Each and every conversation is a conscious effort; the more casual or unfocused the interaction is, the more difficult it becomes. Talking about a task or a shared interest is easy, though I do tend to go on for too long. Even a simple work meeting can take me hours to recover from, and small talk is absolute hell; I will avoid it at all costs whenever possible.
A faux pas while exchanging menial pleasantries may earn a laugh from a studio audience, but ASD-related mistakes in real life are not always so innocuous. As just one example, a long time ago I was accepted into graduate school and assigned an advisor. When I looked him up, his page had a bunch of Princess Bride memorabilia in photos, Princess Bride quotations, etc. Seeing that, I began my introductory email with a Princess Bride reference I thought he might enjoy: “Hello, my name is Mike Zaimont, you killed my father, prepare to die.” It was misunderstood, which is obvious to me only in retrospect. There was a huge investigation by campus security, and I was almost expelled from the program. But had I been asked beforehand if I thought that email would cause any problems, even with careful thought the answer would have been an emphatic no!
Social interactions can go awry so quickly, and with such unpredictability, that I learned to avoid them whenever I can. Many people with ASD have similar reactions, but there have been several inventions that have greatly helped. Self checkouts at supermarkets actually drastically improved my life: I didn’t cook for a long time because I never bought groceries; just the thought of talking to a cashier was enough to completely paralyze me. Texting and chat programs are much less anxiety-inducing than phone calls or face-to-face conversations. Though the potential for mistakes still exists via text, the lack of body language and other cues is actively helpful for me. Online restaurant ordering and shopping, particularly chat-based customer support, is a godsend. AirBNB replaced the experience of talking to hotel check-in desks with retrieving keys from a lock box. Even self-service gas pumps help (yes, I’m looking at you, New Jersey).
I have a complicated mental checklist of heuristics for acceptability that I’ve evolved since I was very young. For example, if Frasier or Niles Crane would say something, I shouldn’t say it (but if Martin Crane or Roz Doyle would, it’s probably okay). I can’t speak for everyone with ASD, but this has helped me immensely. Unfortunately, there are always new situations which give rise to new mistakes, so even an updated list is never enough. Unless I’m talking with very good friends, I feel like I’m wearing a sort of 'human mask': I’m looking out through the eye holes and trying to guess what The Human would say at this point in the conversation so I don’t give myself away. I do voices, like various accents and imitations, and people seem to like it; but the real reason I learned that skill is because I find it so much easier to converse when I’m playing another character. I can determine what The Russian or The Pirate would say much more easily than what The Human would say.
While free-form socializing is innately stressful, that doesn’t mean I never enjoy time with people. Shared interests, like video game gatherings, or other events where socializing is not the main focus, are definitely enjoyable. For over a decade, well before any diagnosis, I’ve hosted an annual gathering on New Year’s called the Alundrathon. To everyone else, it’s a party with food, drinks, and talking, but my role is to play a video game from start to finish while others occasionally voice the dialogue. This is perfect from an ASD standpoint: my friends are around me and can have fun, but my related activity is highly structured and removed from the general free flow of the party. Usually when I attend a gathering, acting the way I enjoy myself most will prompt other people to “check up on me” to make sure I’m not miserable, but at the Alundrathon that never happens. I am only expected to interact as much as I’m comfortable with, which is a huge relief.
As you might imagine, living with someone who has ASD can be very trying. I am forever grateful to my loving, supportive partner of many years for her continual patience, compassionate guidance, and her acceptance of the limitations my condition places on our social life. With her companionship, I have been able to accept some of the aspects of ASD that previously felt the most out of reach. I am incredibly fortunate: I vividly remember how uncontrollable life felt before I met someone who took the time to really understand me instead of just writing me off as needlessly difficult. It’s easy to feel alone with ASD when most of the people you meet are unable to understand you, and many are unwilling to even try.
Being an adult with ASD presents another paradoxical problem: I can appear "normal" more often as I get older and gain years of practice, but precisely because I now appear less odd, the inevitable mistakes I make as a result of missing social cues are shown much less empathy and understanding. Other people have formed a stronger opinion of me that is more forcefully shattered. The current social climate is especially brutal for people with ASD because, as a reactionary society, we've stopped looking for nuance or truth - any blame simply sticks, and further explanation or deeper understanding is irrelevant. We've stopped asking “why?” before getting angry. We've stopped caring about intent. And while that's not good for anyone, the responses to misunderstandings stemming from ASD in particular are much more volatile.
A major reason I wrote this post is that the broad societal understanding of autism is so lacking that even people who know I have ASD still say acerbic things like, “I hope you had a reason for that comment,” or, “You should have known better.” ASD is a valid reason for making an error, but it gets glossed over; and I would love to have known better, but it is part and parcel of ASD that I can’t always tell what’s correct. Being unaware I've said the wrong thing doesn't mean I'm not sorry for causing offense - I am sorry, especially since I've spent my whole life being acutely aware of how much it is possible to offend people, and I would certainly have behaved differently if I could have known. Mistakes resulting from my misunderstanding of the social landscape have led to lifelong difficulties maintaining relationships of all types. Some people 'get' me, many of whom end up being my close friends, but most people just...don’t. The point I'm belaboring is that instead of assuming the implicit “normal” intent from someone with ASD, please ask them to clarify why they said what they did.
Despite the productivity-related positives, more than 40% of people with ASD don't find work or continue their education. Even after much research into how people with ASD can function in society, where they fit, and the unique benefits they can bring, ASD remains widely misunderstood. I don't want 'autistic' to stay a slur on the internet, because people with ASD are first and foremost people. Autism is not visible, but it is no less real for that. Take the time to understand people with ASD - if the Scatman can do it, so can you!
Mike Z
December 3rd, 2020
