Let’s throw functioning labels in the bin
If you’re an autistic person or work with people on the spectrum, you’re probably aware of ‘functioning labels’. Functioning labels are descriptors usually assigned to describe an autistic person’s level of ‘functioning’ by allistic (non-autistic) people (Burns, 2019). Autistic people are frequently shoved into the categories of ‘high-functioning’ and ‘low-functioning’. These terms are used everywhere from casual conversations to educational settings to medical assessments. However, many autistic people - myself included - think that these phrases are outdated, unhelpful, and quite frankly, ignorant. Here’s why.
Photo by Sinitta Leunen on Unsplash.
Firstly, the very concept of functioning is subjective and potentially destructive. In our capitalist society, an individual’s worth is tied to their ability to be ‘productive’ (Price, 2022). That is, to hold down an appropriate job and spend money on things. Autistic people capable of this are usually deemed high-functioning - after all, they’re participating in society, right? On the flip side, someone who is unable to work might be deemed low-functioning. Obviously, conflating someone’s ability to create profit with their ‘value’ is a reductive and harmful approach, particularly for disabled people (Price, 2022). Our ability to meet the demands of a flawed economic system shouldn’t determine whether we’re deemed ‘functional’ or not.
However, even if we accepted that premise, it’s very challenging for any one person to make a judgement on someone’s ability to function. What we see in one environment - such as a person’s workplace - might look very different to their behaviour at home. You might know someone who’s capable and decisive at work, but often skips meals and has a dirty house because they just don’t have the energy left once they’re home. A student might be shy and withdrawn in a loud school environment, but talk their family’s ears off as soon as they get home to a place they feel comfortable. A person who’s friendly and chatty at craft group might be standoffish or brusque when you run into them in the supermarket. Essentially, functioning is very situational, particularly for autistic people. Just because someone is capable of feigning ‘normal’ behaviour in one situation does not indicate their ability to function (Price, 2022).
Photo by Gregory Pappas on Unsplash.
For example, I’ve often been told that I must be “high-functioning”, because I work as a teacher in loud and constantly changing situations. From an outsider’s perspective, I’m a competent teacher who makes small talk in the staffroom and goes home to the house I share with my partner. What they don’t see is all the preparation beforehand and the recovery time afterwards. Before I get to work, my partner makes breakfast, packs my lunch and gathers everything I’ll need for the day while I focus on getting myself ready. This enables me to get out of the door (mostly) on time and without exhausting my limited resources for executive functioning. When I get home from work, I either get into the shower for a sensory reset or strip off anything uncomfortable and get straight into bed for a nap. Keeping a mask up all day at work is exhausting, and I often sleep until dinner (which my partner also prepares). Without his support and hours of recovery time, I can’t make it to work on consecutive days. However, my colleagues and students don’t see all of the behind-the-scenes effort that goes into maintaining my ‘functioning’ façade. That’s no fault of theirs, as I work hard to keep that up. It just means that you can’t judge how well someone is coping with their work demands based on appearances.
For autistic people, our functioning ability is largely dependent on our environment and what’s expected of us. On a smaller scale, there’s another huge reason why functioning labels are absolute nonsense. Autistic people’s needs are constantly changing, even within the same environment. To label someone as high- or low-functioning implies a static, unchanging state and ignores all of the factors that can impact on a person’s ability to function. Sometimes a small change can have a large impact, which functioning labels simply cannot capture.
To give you an example, let me tell you about my bath mat. It’s bright red, has a nice texture and is very absorbent. The problem is that it takes ages to dry, so it’s often damp. On a regular day, I don’t enjoy accidentally grabbing a wet corner, but I can wipe my hand off on a drier towel and move on quickly. However, I’ve been sick recently, so the other night I was particularly exhausted and sensitive. I picked up the towel and got a handful of clammy, wet unpleasantness. Without thinking, I made a throaty retching sound and launched the towel across the bathroom. Thankfully my partner was nearby so was able to help me out (and get a good laugh at my overreaction in the process).
Unfortunately, it’s not always something as benign as freaking out over a damp towel. I do most of the laundry in our house and usually find it quite an easy and relaxing chore. However, there are days when I look at the basket full of clean clothes waiting to be folded and it triggers a meltdown. Something I’m normally capable of becomes an insurmountable task.
Recently I was having a fantastic time with my friends out at a shopping centre. A sudden switch flicked in my head and I found myself overstimulated and nonverbal. Thankfully, I was able to communicate how I was feeling to my understanding friends and had my emergency supplies with noise-cancelling earbuds and a range of stim toys. My self-knowledge and coping strategies prevented a meltdown, but the change was jarring. I went from thoroughly enjoying myself without using supports to feeling disproportionately angry and needing loud music, stim toys and nonverbal time in about the space of 10 minutes. It’s a disorienting experience and a sharp, often unwanted reminder of my disability. Support needs can change in a matter of seconds for autistic people, and we don’t always understand what triggers it. At the beginning of the outing, I could’ve passed for someone very “high-functioning”. Less than two hours later I was sitting in the food court rocking back and forth, almost completely nonverbal - what most people would think of as low-functioning. Functioning labels are simply not sufficient to capture the complex experiences of being autistic, and describing someone as “high-functioning” often means they miss out on important, necessary support.
Photo by Yura Fresh on Unsplash.
The functioning labels are also overly dependent on an autistic person’s ability to verbally communicate. If someone is ‘non-speaking’ (that is, doesn’t communicate through conventional speech), they are often slapped with the “low-functioning” label. This dismisses and diminishes their ability to communicate (Burns, 2019). For non-speaking autistic people, options such as communication aids, sign language and writing (paper or digital) mean that speech isn’t required to get their point across. Advancing technology has opened up new ways of communicating. Low or no vocalisation isn’t equivalent to lacking ‘function’.
Functioning labels are unhelpful, outdated ways of thinking about people on the spectrum. Sorting us into two groups leads to negative assumptions and people not receiving the help they need. Rather than calling people high- or low-functioning, it can be more productive to discuss their support needs (Price, 2022). This places the focus on what autistic people need to thrive, rather than on perceived deficits.
If you’re an allistic person, especially if you work closely with autistic people, please steer away from functioning labels, and gently correct other allistic people who use the terms when safe to do so. Using the right language can have a significant impact on the way people think about autism.
References
Burns, A. (2019). Why the "high/low-functioning" labels are harmful to autistic people. Learning Disability Today. https://www.learningdisabilitytoday.co.uk/why-highlow-functioning-labels-are-hurtful-to-autistic-people
Price, D. (2022). Unmasking Autism: The power of embracing our hidden neurodiversity. Monoray.
