Invisible disability and social effort: an anonymous account

My disability is invisible. This means if I try really really hard, you can’t tell that I have it. Sometimes I try so hard I can’t tell that I have it either. Until I get weird looks. I’m a little blunt, and I often don’t intend to be. And then the exhaustion hits.

How did I get here? Well, well, well. Watching ‘The Accountant’ brought back memories. Remember the main character, who forces himself to acclimatize to situations he’s not comfortable with? That was me. After I was finally diagnosed with autism, I thought it really important that I learn all these social skills that I had suspected all along weren’t innate to me by rote, as fast as humanly possible (for me). I’d just lost 2.5 years! At the age of 15, that seems like a really, really, long time. I was panicking! So of course, one of the first steps I took was to join a political party that I felt I aligned with. Hello, Young Labor! What’s a tougher social environment than politics? And of course, I could get involved in a a cause I really cared about at the same time.

As you might expect, it didn’t go well. It was TERRIBLE. Inevitably, I came to the conclusion that this it was a little too much and started networking instead. I was 17. What was the next move? I joined the startup community! Yep, it started as just a legitimate-sounding excuse to leave the house. 5.5 years later I’m still kinda there, and I have quite a few close friends that I have made throughout my time at UNSW. It looks like it worked it, right? Well, only kind of.

What worked in the end? Finding people I felt really comfortable with, who felt comfortable around me. Learning what people and the atmosphere around you looks like when you’re about to cross the line, and learning how to step back in a ‘fun’ way. When I can tell I’m about to be overwhelmed, I leave beforehand so no one sees it. I hide in bathrooms often. I can’t stand sharp noises, or sudden ones either, but that’s another story. I’m learning to be less passive, step by step. I alternate between being highly socially withdrawn and almost the opposite. I’m learning how to coordinate people at work. I’m always anxious that I’ve said something wrong, or said the right thing the wrong way. If I’m really overwhelmed, I’ll only talk to like 3 people outside of my work for weeks. I’m in a rough mood for at least a few hours if my routine gets disrupted. What has helped me find my equilibrium is spending time working out how to reset my disrupted routine so I can go back to it as fast as possible.

Learning social skills by rote is HARD. A common tactic I used for a few years was echolalia. My specific usage was that I would exactly copy the common phrase that the person I was hanging out with was using. As you might expect, it looked just a tad creepy. Another method was trial and error, simply testing things out. Also reading about social cues. There’s one type of social cue I’ve always been able to recognise, but the rest I’ve gradually been able to learn. It’s taken me about 7 years to get to this point and I’ve still got a fair amount to go.

Friendships with a few social groups were fractured. I always wanted to hang out with the most social person in the group, even though I was not ready for that level of interaction, and truthfully I’m not now either. What worked really well for me was finding social groups where there were a few other autistic or even borderline autistic people. Failing that, people who I had quite a few things in common with, whether it was childhood experiences, or common interests (yes, special interests too). Always something to reminisce about or discuss, and I didn’t even have to have known them at the time! This was, to be honest, pretty handy.

All in all, I appear much less autistic than before, and people do treat me far better as a result. It’s a damn shame that it is the way the world works. And with hidden disabilities, the lack of visible signs is no indication it’s gone. It’s just a sign we’ve put considerable effort into hiding it.