I’ve written before about how people have put me in the box of the “high functioning” autistic person, that because of my ability to adapt to the world and perform “normal” when needed, I must either be very minimally affected, or have good coping skills in place to mitigate the more frustrating traits of my wiring.
I do not think those words mean what you think they mean.
People think of me as “high functioning” primarily because I have an identification of Asperger’s Syndrome, and because I am verbal. But what if neither of those things were true? I mean, Asperger’s doesn’t exist on the books anymore (and no, DSM 5, I’m not sure how I feel about it), and I’m not always able to express myself verbally at all.
Also, there’s this. I related so much to this. I figured out really early on that who I was didn’t match others’ expectations of me, so I spent a lot of time watching other people – in real life, on tv, in books – to develop a performative identity that made me stand out as less … othered. I spent so much time focusing on what others seemed to want from me that I never really got around to figuring out what I needed to grow. I suppose a bit of it happened anyway along the way, but for the most part, there is a disconnect.
So here I sit. I’m almost 40 on the outside. Cognitively, I’m a person who’s 3 weeks from finishing her fourth university degree. I’ve been gainfully employed, I can manage to keep our bills paid. Emotionally, though? I haven’t even hit puberty most days. At my oldest, I’m about 12, and that’s a rarity. I am emotionally easily overwhelmed, particularly when in situations where the behavioural expectations of me are much older than I can meet in that moment. When I am at my most emotional, I’m not capable of performing in the more adult ways most people are used to seeing from me.
And if things are too much, I shut down. Completely.
I had a recent experience where I tried to be as prepared as I could be for the potential emotional fallout. I believed I was capable of being stoic, of being a grown-up, of performing functional adult well enough. And then, I just wasn’t. I was agitated, couldn’t make eye contact. I wasn’t able to reason, to take criticism, or to respond to it. If I had to pinpoint an age, in that moment, I felt about 7. The muscles in my mouth and my throat got tighter and tighter. Talking became more of an effort, to the point where I just couldn’t do it anymore. I was so exhausted from the effort that I found myself curling up in a chair in public, struggling to stay awake. I tried eating during this time, only to find out that all the muscles that refused to work for talking were also paralyzed against eating. I couldn’t make my mouth work. The act of even chewing a single french fry left me completely fatigued. In the end, I was so depleted that I couldn’t continue the interaction to a mutually satisfying conclusion. I bailed.
A choice a “grown-up” would make? Probably not.
Do I wish things could have gone differently? Of course. Do I wish I could have communicated my thoughts and needs out loud, and not just with a pencil and notebook? Who wouldn’t? I recognize that I’m not an easy person to talk to when my emotions run high. I get that being non-verbal after demonstrating I’m capable of spoken communication can be frustrating to the people who are trying to reach out to me. And believe me, I know it can be annoying to deal with an adult who is suddenly behaving so much more like a child.
If I can control all of these things some of the time, why can’t I control them all of the time? The simplest answer to that question is because I can’t.