What it’s like some days

Occasionally, the world is too much. Autistic people have to deal with sensory issues all the time. Noisy neighbours who aren’t really noisy, it’s just that we’re more susceptible to certain noises and when we can’t get away it can lead us to melt/shutdown. Strange smells. Unusual food tastes or textures. The way the light bounces off a shiny part of the floor in your backroom and now you hate yourself for forgetting to factor that in when buying said floor. Clothes labels that are unnecessarily harsh because the robots who made them don’t have skin to test against. It’s a bit much but it’s only part of our day.

By the time I’m dressed and ready to face the day I notice social media is open on my phone and I’m unconsciously scrolling through the news. I see articles about autism using outdated language. “People with autism” for example. It’s outdated. If it’s not that, it’s perpetuating the myth that “autism is more than four times more common in boys than girls.” It isn’t. “Diagnostic criteria are developed using white boys and men, failing to serve many neurodivergent girls and women.”

“When a condition is described in a biased way, the diagnostic methods are biased,” said the study’s lead author, Kaustubh Supekar, PhD, a clinical assistant professor of psychiatry and behavioral sciences. “This study suggests we need to think differently.”

I chose to ignore, putting aside something I can’t globally change right now and searching for some nice autistic news topics for this very newsletter. Almost everything is written for the parent who wants to cure/fix/help their kid “with autism”. It is rare that something is written positively about the autistic lived experience by an autistic person who has lived the autistic experience. That is changing, slowly. I still see articles discussing Asperger Syndrome and that’s bad because it’s named after a Nazi who tortured people for “science”.

There are a few reasons why I think we should get rid of the name. One has to do with medical ethics. Eponymous diagnoses are granted to honor individuals who are describing a condition for the first time and to commend their work as human beings. And in my opinion, Asperger merits neither. The second reason to rename the diagnosis is that it no longer exists as an official diagnosis according to the American Psychiatric Association. In 2013, it was reclassified as autism spectrum disorder. And so today, you can’t receive a diagnosis of Asperger’s syndrome in the United States. – Sheffer tells NPR’s Michel Martin how Hans Asperger’s Nazi ties were hidden for years.

It’s 10am and I’m exhausted from trying to exist in the world. I nip to a café for some fresh air, views, and an attempt at a drink they call coffee. “One hot cup of brown water please.” A few minutes later and I need the toilet.

Ah, the fun of being non-binary and needing to pee. I’m in a skirt so I should pee in the room matching how I look, right? I don’t look like the other stick figure unless I remove my clothes. The sign can’t be saying “Skirted folk to the left or naturist folk to the right” can it? Just to be safe I search for the disabled toilet. Being autistic means I’m disabled, which means I’m free to skip out on all this toilet outrage and wait by the disabled loo for someone to tell me I’m not disabled enough for it.

Ugh. Seriously world? I just want to read some positive stories about people like myself while enjoying a hot cup of brown water. Followed by a good 40 minutes pondering whether I should pee in the men’s room, disabled loo or forrest 30 miles (ca. 48 km) away from civilisation among judgemental squirrels. All this so I can feel like life is worth living. #blessed.