14/01/2021

Autism Functioning Labels & Why They're Problematic

This piece is part of a series of paid commissioned opinion pieces by Disabled writers. Disabled people are constantly asked to work for free, to give their opinion for free and to educate people for free, and so I have created this space to not only give Disabled writers the opportunity to write and speak, but to gain income as well. You can expect to hear from a wide variety of Disabled, Deaf and hard of hearing, Neurodivergent people and those living with chronic and mental illnesses. This is entirely fundraised for, so if you can spare anything at all to help fund this then I would be so grateful if you donated to the PayPal Pool. 

Autism Functioning Labels & Why They're Problematic

My autism diagnosis was delivered in a dark and stuffy meeting room, just along the corridor from the classroom where I'd considered that I could be autistic. Amidst a chaotic history lesson, a classmate suggested that I researched autism, after he'd picked up on the extent of some of my "quirks" as I labelled them. Truth be told, at first I thought I was being insulted having only really heard "autistic" used as a synonym for "weird" or "freak". I was vaguely aware that a friend's sibling had an autism diagnosis, but I couldn't identify a single similarity with them, other than a shared distaste for loud noises. Nonetheless, I would receive my own diagnosis around a year later, packaged in pages of notes and sealed with a long-winded label: Autism Spectrum Disorder Level 1 (Non-Intellectual and Non-Language Impaired). Or, as I was often reminded, "high functioning autism".

Understandably, people react to their diagnosis in different ways; some people prefer to come out slowly, others will refrain from disclosing it all together. I wanted to tell everyone. For the first time in my life, I felt understood. There was something so freeing and affirming about having confirmation that the differences I had worked so hard to supress were okay. Finally, my difficulties with regulating my emotions, my rigid, literal way of thinking about things, and sensory struggles had a name: autism. More often than not, I was met with doubt and disapproval. I did, however, find that people found my diagnosis more palatable if I described myself as "high functioning". Admittedly, it was easier for me to accept it if I thought about it that way too.

Autism, as is so often stated, is a spectrum. Often, however, this notion is used to support a false binary. There is a common misconception that if you are autistic you belong in one of two categories: "high functioning" or "low functioning". If you're considered "high functioning" you likely speak, attend mainstream school, and mask (i.e. hide) your traits well enough to function in a social setting. Typically, "low functioning" is used in reference to non-speaking autistic people, particularly those with a co-occurring learning or intellectual disability. Human beings tend to slot things into neat little categories with neat little labels. The problem with functioning labels, is that they just don't cut it; they are both redundant and offensive. So often "high functioning" is used as a synonym for "savant" or a euphemism for "not really autistic" - either way, it is often used to justify ignoring a person's support requirements. 

Conversely, "low functioning" is used to peddle the notion that speaking is the superior mode of communication, and that autistic people with a particular set of consistently high support needs are incapable of autonomy. The idea of autism as a spectrum is supposed to illustrate that being autistic affects no two people in the same way; our difficulties can vary depending on time, place, or context. To assign such rigid labels entirely misrepresents the experiences of autistic people all over the spectrum, a great illustration of this can be found at Art Of Autism. 

When I was first diagnosed, there were a lot of confused responses. One person asked, after I'd been assessed by a team of psychologists, if "you're sure you're autistic?" adding; "my mum works in a special school and you're nothing like the kids she teaches". 

I couldn't have responded quicker, insisting that I was "high functioning" and that those kids were "low functioning". I recognise now that this move, to separate myself from other autistic people, was one fuelled by internalised ableism. In doing so, not only was I mistakenly positioning myself as being a "better" kind of autistic person, I was reinforcing the very stereotypes that would prevent me from getting the support that I needed.

As I would discover, when people hear that you're "high functioning" they expect you to mask to the max. Or they start to ask questions about your savant skills and superpowers - reinforcing the common misconception that all autistic people are geniuses. This conception of autism can push people one of two ways: towards a superiority complex, or into the arms of imposter syndrome. I still find myself embraced by the latter, plagued by the question: "am I autistic enough?".

It has been around five years since I was diagnosed. I no longer think of myself as "high functioning". Hannah Gadsby, in her charming stand up show Douglas said it best: "I have what's called high functioning autism, which is a terrible name for what I have because it gives the impression that I function highly". When I have to rely on my partner to cook all my meals, tie my shoelaces, and answer my phone calls I don't feel "high functioning". When I'm teared up in a lecture unable to concentrate because of someone's pen clicking six rows behind me, I don't feel "mildly autistic". When I have to cancel plans with people I love because I'm so drained from a meltdown, I don't really feel like autism is my "superpower". Instead, in those contexts where I have to disclose my diagnosis for the sake of accommodations, I opt to describe my specific support needs. Not only does this avoid reinforcing functioning labels, it also helps to ensure that I'm more likely to receive the specific supports that I need.

As the old adage goes, when you've met one autistic person, you have met one autistic person.

Hailie Pentleton (she/her) is an English Literature and Philosophy student at the University of Glasgow. She is currently the Views editor for the Glasgow Guardian and the Disability Equality Officer for her Student Representative Council. Her favourite subjects to write about are neurodivergence, disability issues, books and education. 

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2 comments:

  1. This piece is very well written and so informative! I'm currently seeking diagnosis for ASD, and I'm so glad that topics surrounding functioning labels are being discussed and shared on mainstream platforms! I'll be sharing this everywhere I can :)

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  2. This is really great. These were the words I needed to hear. I haven't been diagnosed but I've done research and heard other testimonials and they made me feel less alone. I'm pretty sure I'm on the spectrum but it's hard to communicate with the people I love sometimes. Thank you for sharing your story!

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