What’s it like to be on the spectrum?
It is to be able to do wonderfully complex and abstract things, at the speed of light, yet to be stumped at how to give straightforward directions to others.
To be diagnosed after the age of 30 is to learn quite resolutely: the weirdest feature in my being is not who I am, but what I do not understand. I do not understand what is easily understood by most. But I have done a good job pretending I do.
People expect me to understand because I manage to pass for somebody I am not: well put together. In charge of my mind and body. Able to hold a conversation, fill rooms with hundreds of people. Capable of making inferences and deductions based on fact and feeling. Able to pass for ‘neurotypical’.
In recent conversations like the ones I’ve had to pay a lot of money to have some obvious things pointed out to me, I’ve had to dig into the recesses of my psyche. Things I thought I’d scrubbed out of my brain and consciousness. I did not have to go back very far:
I live in my head, suspended between my thoughts and reality. In my head, I have already raced through the day’s tasks elegantly, solving one interesting problem after another. In reality, I struggle to put on my shoes. Five year old me’s daily problem: no matter how hard I try, I cannot will my fingers to arrange my shoelaces and straps in a manner that makes sense. This still happens to me. In my head, I may have made spreadsheets upon spreadsheets to address every question I have thought of while showering in the morning. In reality, I cannot will an arrangement of words and numbers to show up without brute force. This tires me.
At social events it would be nice, of course, to finally understand how to moderate my speech or behaviour to match what is expected of polite company. But I am interested only in a very tiny set of topics. It helps then to not know what it feels like to pass for social; I have only ever managed to wager a guess. Since I do not know how that feels like, I do not know how to want those things, which is often mistaken for apathy.
It was to have made mathematical calculations of my romantic odds instead of caring for people on an individual level. For that, I am sorry. All of those times people asked me on OkCupid or Tinder what I was looking for and I said ‘an algorithmic match’, I thought it was the only thing to say. And if we actually dated, I was still looking for the algorithms and my mainframe was out of date.
Being on the spectrum means I grapple with simple questions: the one which terrifies me most, even to this day is — how are you? There is a five second delay in which I think, how, am, wait, what does that mean and who am I? Am I good today? Is that the truth? Am I more good than the last time I was asked this weird question? It feels like an infinite loop. Asking me how I am or how I feel, is no different from being asked to reach into the bottom of my soul and finding no difference between one abyss and another. How am I? How do I feel? I don’t know.
In place of feelings, there are patterns.
There is the pattern of ‘everybody is smiling am I more convincing at making eye contact now or am I still failing’. This sometimes looks like I have too many feelings, or that I have none.
There are the patterns of ‘this looks like something which has happened before which leads me to conclude… Something’ and ‘oh shit I got it terribly wrong’. There are few patterns in-between.
I have been lucky to find my feet in a career that skews unfairly towards people on the spectrum, but the parts of it: the speaking at conferences, the socializing and networking, the parties, the world of people talking to and understanding each other, that I shudder at.
To be on the spectrum is to have few tools for anger and other emotional processes. How is someone else feeling? I can only wager a guess. It is to disproportionately over-emphathise (because it seems like that’s what people do), or to do too little of it. For me, it is also to be completely incapacitated in the in-betweens: what is not said. Even then, what is said can also have the same effect when it is said in a different way — that matches another pattern.
It feels like living in a bad torrent. It is a blockbuster movie to everyone else who somehow always finds a way to watch the IMAX version. But yours resembles a pirated movie torrent with an audio track that is 10 seconds out of sync — ahead. It all sounds like gibberish, and there are somehow no subs of the right language and container size and codec. You have to watch it anyway.
Slowly, the other movie is coming into focus.
Maybe I’ll never be able to see all of it in high fidelity, but — I’m told it is up to people like us to find new standards of definition.