I am autistic. To be more specific, I am a very high functioning autistic, which means that I don’t look autistic. I pass for neurotypical most of the time. The passing makes it hard to cope with, though. Sometimes I wish there were some visible symbol I could have so that people would know what I am when they first approach me, but I don’t have a cane, or a wheelchair, or a service dog, or braces, or anything else that indicates that I might be anything other than what people expect. So people expect their interactions with me to go a certain way, for me to respond a certain way. Even when they’ve seen more of how I function, they still tend to go back to expecting me to function neurotypically. And of course I get blamed for it when I don’t.
I struggled to come up with an analogy that might convey how I feel about this. It’s hard precisely because it doesn’t really happen elsewhere, it’s not something that anybody would consider doing to a person with a visible disability. The best I’ve been able to do uses blindness, since that is a visible disability that I have the most experience with (without actually being blind myself).
When a blind person walks into a room for the first time, say to join a club or a church, they might run into people they can’t see. They might have difficulty identifying people when they only have a voice to rely upon. They might have to use their cane to find their way around the room, to learn the map of the furniture. If they do physically run into somebody, or knock over a drink while walking, or commit some other faux pas, of course they will apologize. They certainly don’t intend to run people over, or to break things, or to make a mess. They just can’t see where they’re going, they can’t see when they’re about to run into something, and bumps and spills and stepping on toes happen to the most mobile and independent blind adults. It’s a functional aspect of not being able to see the world around them.
What generally happens when a blind person joins a new group is that people are solicitous. Once they know that the blind person can’t see, they understand why bumps and spills happen. They may make an effort to move out of the way when the blind person is walking around, they will try to warn them of things that need care such as open glasses on the table before them, or children running about on the floor, or a cat on the chair they’re about to sit in. If not, that’s okay, too; the competent blind adult tries their best to use care in movement, and when mistakes happen they can apologize and carry on.
What if, instead of watching out for them, everybody in the room continued to pretend the blind person could see? What if they kept showing pictures without explaining (yes, I know I’ve been guilty, but I do try), saying “Hi!” without attaching a name to the faceless voice, getting upset when the blind person runs into them, getting upset when something gets bumped or spilled? What if every response was along the lines of “Why can’t you just watch where you’re going?”
As if they could just manage to see everything in the room and comprehend and interact with it visually if they just tried hard enough.
“I need you to see!”
This is how I feel interacting with other people. Would you blame a blind person for giving up on having a social life, if this is what they always encountered?
In every social group I’m in, in every relationship, eventually I’m going to say and/or do something that royally pisses people off. It’s inevitable. It’s going to happen, because in social relationships I can’t always see where I’m going. (To go back to blindness, a blind person knows they’re going to fall and run into things at some point, because they can’t see where they’re going.) It’s the hallmark of autism all the way up and down the spectrum, having difficulty with communication and with social interactions, and it applies to the high-functioning Aspie end of the spectrum as much as it applies to the non-verbal, non-functional end. But those of us on the Aspie end can pass. We don’t immediately present as autistic, and we can even go a lifetime without ever being formally diagnosed by a doctor. We’ve learned how to mimic looking folks in the eye or how to acceptably avoid it. We’ve learned some required social scripts, how to say hello and goodbye, please and thank you. We’ve (sometimes) figured out when it is not okay to talk about the things that really interest us, and we have a list in our heads of Things Not To Say Or Do (you know, like “don’t stare at her boobies”, “don’t talk first”, “don’t make the first move”, “copy the people around you in any situation”).
Much like a competent blind adult knows how to use their cane to get around, has lots of practice creating mental spatial maps, has learned special tactile and audio skills to help make up for the loss of vision. They know to turn their head toward the person they’re talking to, that it’s not okay to rock or poke their eyes, how to tell if the pot of water is boiling or the cup is full. Some, like my husband, do these things well enough that they can pass for being sighted, at least for a little while. Nobody ever expects that this means a blind person is sighted, though.
That seems to be the expectation most people have for people like me, though. That because I can pass for neurotypical, then any mistakes that I make are intentional and willful, just a matter of not trying hard enough.
And gods forbid I ask for help. When it becomes clear that I’ve messed up somewhere, I’ll try to figure out how. I want to know where I went wrong, so I can add to my list of Things Not To Say Or Do. I want to know what I should have done, so I can add to my social scripts and perhaps avoid a problem in the future, should that particular situation ever come up again. I won’t understand why my intention didn’t come across, any more than a non-verbal autistic understands why their caregivers don’t understand that this particular screaming fit means that they have a headache, but I will accept that the communication did fail. But asking for help always makes it worse. Asking for help pisses people off even more than the original offense. They lash out at me, stop talking to me, yell and scream, tell me I don’t belong, ask me to please shut up and go away.
Imagine a blind person, after running into several people in a crowded room, asking for a little help in finding a seat, and being yelled at to just watch where the hell they’re going or get the hell out.
Hard to imagine, isn’t it? Because nobody would ever do that to a blind person.
Yet it happens to me all the time.
Is it any wonder that I just don’t bother so much anymore? Is it any wonder that I would rather just stay home than try to deal with people, stay out of online forums instead of trying to find community? I’ve had trouble in doctor’s offices, in parenting groups, in offices where I work, in schools, in crafting groups, in religious groups, even with neighbors and friends who have known me for years. No place is safe, I am never safe from that expectation that I should know better, that I should understand what I’ve done, that I should somehow be able to follow along in a dance I can’t see.
Is it any wonder that even high-functioning autism becomes a disability?
Is it any wonder that I treasure my husband so much just for being there for me, for continuing to stay by my side and loving me through every miscommunication and misread glance and gesture, through every misspoken word and misunderstood request between us?
Is it really such a terrible thing for me to ask for help when I can’t see where I’m going?