Why Autism functioning labels are a joke.
Every single day I am kept going by support. This week showed the effect of what happens when my families support is removed.
Friday morning – I received a work email that meant my plans for the day were all changed, something needed doing urgently and I would need to focus on that new task.
Friday lunchtime – I got home and started my strict lunchtime routine. Then I realised I had no internet. EE told me it was because I hadn’t picked up a parcel from the sorting office. I can’t do that; I am unable to. So now I’m having a hard day and my weekend plans of research for my masters is gone? I can’t recover from work by watching shows.
Friday afternoon – I get back to the office. Open my desktop to an email with a second unexpected urgent task. And that is when I hit meltdown.
As soon as I registered what the email was saying I left the office and shut myself in the toilets. Then the meltdown hit. Crying. Sweating. Shaking. Applying force to my own hands. Struggling to breathe. Meltdowns are a horrendous experience and I was having one in the toilets at the office.
Then I walked back into a loud, busy, overwhelming office. At 1:06pm. I had to sit there until 5:30pm. Caught between the need to sleep, the feeling of being about to pass out and the urge to throw up from exhaustion.
There was absolutely nothing ‘high functioning’ about me on Friday. My family weren’t there to help me pick up the parcel and I could not process this among the work day challenges. The mask dropped and I felt exposed, vulnerable to a world I could not navigate. I am not sure how I got myself home safely, it was just a mess of noise and movement.
To call me high functioning is to dismiss the challenges I face every single day. I am incredibly lucky that I have friends, family, medication, reasonable adjustments and access to therapy, to constantly stitch me back up when I break. If my colleagues hadn’t of stepped in that afternoon to support me, it would have been even worse. If my brother hadn’t of rationalised a course of action for EE, it would have been worse.
High functioning. Because I did okay academically in school? I completely rely on other people. I am just a puppet to society, desperately trying to follow its rules. I fall, I break, and someone or something must stitch me back up.
High functioning. I’m one of the ‘good’ autistics, right? The not so bad ones. The ones that can contribute to society.
High functioning is a joke. I am barely functioning at best.
79% of autistic adults fight mental health battles, with us being 9 times more likely to consider suicide. I’ve suffered severe depression twice in my life (at only 27!) and seriously considered suicide twice. Of course I have. This world kicks the crap out of autistics, high functioning or not. I was diagnosed and then sent on my way, told there is no support for high functioning autistics. That needs to change. We deserve help to navigate a world that, by diagnosis, we are not designed for.
A ‘low functioning’ label is degrading and dismisses strengths.
A ‘high functioning’ label glorifies autism and dismisses struggles.
I am Autistic.
To my family:
For all the little things, the ‘it’s not a big deal’ things that you do. Without you ordering my food I could not go to the restaurant. Without you finding me a seat or a space to stand I would not attend events. Without you picking up my medication I wouldn’t be able to leave the house. Without you constantly going to new places with me, when you have a hundred more pressing things to do, I wouldn’t be able to pursue the life I want to. When I hand you my items and you don’t question that I can’t do the paying transaction. I have always been and will always be grateful for the things that you just do, not because I am autistic, but because I am Rosie, your daughter or sister. I love you all endlessly.
Illustration, as always, by Sanna H who did an amazing job of bringing this vision to life.
Source for mental health stats: