Quirk Monster #7: Why I don’t like functioning labels for autism
I was having a blood test when the nurse spied my medicalert bracelet. They flipped it over, read the inscription and laughed. They grinned and said “Oh it must be mild! You’re doing so well at hiding it!”
I was at a family member’s house when I used the word ‘autistic’ in conversation. A close relative interrupted and haughtily informed me “No, you are not autistic, you have Asperger’s and you need to work much harder to overcome it!”
I was on the phone to an airline attempting to organise a Meet and Assist Service (to be discussed in a future Quirk Monster post) when the staff member cut me off while I was explaining that I’m autistic. “Did you seriously just say you’re autistic?!” they spluttered. “How is that possible? You’re talking!”
These are all examples of functioning labels in action. Moments in my life where stigma, myths and misunderstandings around one six letter word have fed inaccurate and really unhelpful perceptions of my support needs and life as an autistic person.
Functioning labels come from medical contexts and are often outdated — non-medical people often use terms that are no longer in use and don’t always realise. Functioning labels have no place in the social contexts of day to day life. When people view autism as ‘mild’, they don’t always take support needs seriously and when they view it as severe, they don’t always take that human being seriously.
Functioning labels and the bias they introduce make life even harder for me as an autistic person who presents as ‘mild’. I can assure you, there is nothing mild about what’s going on between my ears on any given day. I’ve had the validity of my support needs questioned in multiple environments across all areas of my life. Workplaces, universities, public places, family events and when engaging with service providers.
I’m constantly having to explain myself and defend my rights and needs to non-autistic people whose first instinct is often one of disbelief, denial and sometimes even mockery. My support needs are routinely mistaken for preferences, skill gaps and performance issues. The burden of proof is almost always on me often with little to no regard for my wellbeing because I’m viewed as the problem. I’m that difficult person making trouble for other people (again). Cleaning up the mess caused by functioning labels is exhausting, time consuming, humiliating and heartbreaking.
Autism is autism. It’s a spectrum. No two of us are exactly the same. Diversity in the autism spectrum cannot be pinned down or shoved into a box and that’s a really beautiful thing. Trying to fit autism into a linear flow of severity isn’t helpful for anyone. Accept people for who they are — as they are.
I like to think of autism as a highly detailed colour wheel. It’s flat, round and every single tint and shade of each hue is an autistic trait. Every autistic person has their own unique configuration of traits resulting in a one-of-a-kind palette.
I have also heard* autism described as a cupcake. Cupcakes come in different sizes and flavours and some are gluten-free. Some have icing, some have sprinkles and some have both. When you buy a cupcake, you don’t ask how ‘cupcake’ it is. You don’t ask if it’s a ‘severe’ cupcake or a ‘mild’ cupcake. No. You love that cupcake just the way it is because it’s a cupcake and all cupcakes are awesome.
*I wish I could remember where I heard this explanation so I could credit them, but I don’t and I feel bad about that, so please forgive me.
This short article is a lived experience example shared from my life to help you understand a little bit more about what it’s like to be autistic. I am just one autistic person in a really big world. No two of us are exactly alike. I can only speak for myself and to my own experiences. If you want to know what other autistic people think — and you should — look them up, talk to them and read their work too. We all have our own voices and this is only mine. This article is part of a mini content series I publish to LinkedIn when I can. You can view the other articles in this series via my LinkedIn profile.