Living life in hard mode

“Don’t be daft, no one else feels that.”

That is a typical reply to when I would say something like, “The sun is hurting my eyes.” Or if I wore a cap to shade my eyes as well as wearing sunglasses, “You don’t need both.”

I do.

Mild abuse can be shrugged off. But when it is an everyday occurrence like a dripping tap it builds up until it gets too much.

In school, children who appear different get picked on. That’s just the teachers, bullying, from other children is even worse. At work, the person who gets on with the job without joining in with the banter is “not a team player.” So is the person who gets the rules for banter wrong. What are those rules? When is it OK to interrupt? The rules are not written down. You’re just supposed to know.

I don’t know.

That is life growing up autistic without diagnosis, or even not knowing you are autistic. I hadn’t even heard about autism when I was 52 and was told I acted autistic by a psychologist. It opened my eyes: Life for most people is not as difficult as I had imagined, I had been living life in hard mode. All the bullying and gaslighting I had received had given me social anxiety. I am scared of new social gatherings. It wasn’t always the case.

With all its colour, noise and crowds, the modern world isn’t designed for us autistics. Too much input from light, sound, and smell can overwhelm our senses. For me multiple conversations in a busy room is distressing, I can’t switch any of these conversations and end up trying to understand three of four at once.

Has modern society made life harder for people with autism?

Yes and no.

No, in the sense that we know a lot more about autism now, and research is ongoing. With the right support, accommodations, and understanding from society, many autistic people thrive but we often have to find out what accommodations are available ourselves without help.

Yes, it is harder. I have worked in an open-plan office. Bright lighting, people moving about and constant noise distracted me, but the worst was being interrupted when working. Many autistic people like me find interruptions distressing.

There is a lack of understanding in society of autism. Yes, we are often inflexible, especially where routine is concerned – on my commute, I always tried to stand in the same place on the station platforms. At work, I worked better when sat by the wall. I worked even better than that in a corner, which helped with the sensory overload of people going past. Simple accommodations mean so much to us.

The thing about autistic people is we are all different from each other, accommodations that work for one autistic may not work for another. Ask us, don’t assume. Equality is not treating everybody the same. Equality is giving everyone the conditions in which they can thrive.