Why It’s Important to Unlabel Yourself

By Robert Watkins

Portrayals of autism in popular media have, more often than not, depicted autism from a neurotypical perspective. From relatively early portrayals, such as the films Rain Man and Temple Grandin, to more recent films like The Imitation Game and Life Animated. Even Netflix’s variously received series, Atypical, allows us little more than a glimpse into the inner life of an autistic person. But that is the nature of media: we are spectators, looking on. I am encouraged by the groundbreaking approach of the upcoming romantic comedy, Keep the Change (currently making the rounds of film festivals), in which all autistic characters — including the leads — are played by autistic actors. I can’t help wondering, though, how deeply a neurotypical will be able to identify with these autistic characters.

Getting to the Root of the Problem

This is, from my perspective (irony fully intended), at the root of the problem with the labels, “high-” and “low-functioning” autism (and especially the dreaded, “not that autistic”). There has been more written of late about these problematic descriptors, which is good to see, because that means the subject is being openly discussed. An important part of today’s disability rights movement is an effort to have ourselves seen for our abilities rather than our disabilities. I, myself, am a strong proponent of seeing our community for what we can do rather than what we cannot. It might be tempting, then, to suggest that the “high” and “low” labels come from the side of “we are able” because they purport to describe autism in terms of “functioning”, and “functioning” is “ability”.

“Functioning” Labels Are Tricky

But that would be disingenuous. The distinction may at first appear to be subtle, but in fact it is significant. These “functioning” labels don’t, in truth, describe the level of ability of an autistic individual. Instead, they are most frequently used to describe the distance a given spectrumite (someone on the autism spectrum) is from the neurotypical norm; how well an individual “fits” into neurotypically dominated societal structures. And this is where it gets tricky. Odd as it may seem, there isn’t a direct correlation between the ability of an autistic individual to seem to conform to society’s norms and that individual’s abilities.

Allow me to use myself as an example. Fluorescent lights drive me round the bend. Sitting outside in my hammock, fluorescent lights are a non-issue. In an office, they can easily be a problem as they interfere with my ability to concentrate; I am less able. In the one context — and here we’re limiting the discussion to a sensory issue with fluorescent lights — I would be, to use the disputed terms, high-functioning; in the other, I’d be lower-functioning. I prefer to say that outdoors, my fluorescent light impairment does not present a disability, whereas in the office it might.

This way, it is not me, the individual, who is being described, but rather the relationship between my sensory issue and the context I’m in. And I am many things in many contexts.

The Relationship between Context and Impairment

It is that relationship, between context and impairment, that is key. The distinction between a disability and an impairment can easily be described. If Tamika uses a wheelchair to get around, and encounters a flight of stairs at an entrance, she is stuck. Tamika faces an impairment, her wheelchair can’t climb stairs, and a disability, as she can’t use the entrance. If, however, a ramp is introduced, the impairment remains (a wheelchair still can’t climb stairs) but the disability disappears because Tamika can now get into the building. Calling upon the fluorescent lights example, fluorescent lights will always be an impairment for me, but if they are turned off, the disability dissipates. Because each of the varied aspects of autism’s accompanying impairments engender different levels of disability in different contexts, it is impossible to accurately apply a label such as high- or low-functioning without taking the context or environment into account.

Taking Context and Environment into Account

Even when an autistic person appears to be coping really well, at work for example, what is not visible is the often superhuman effort required to keep the lid on. More than a few of us have had to find some way to let our coping muscles relax after work before we can properly interact with our family. Our coping muscles can get knotted and tight from a day at work, and if they’re still coming unwound at the dinner table it’s not always a pleasant experience. We may seem to conform to neurotypical behavioral standards at work — we may appear to be high-functioning — but that doesn’t mean it’s achieved without cost. Our ability to function is reduced by the effort to fit in.

Autism, still today only diagnosed based on observation, doesn’t itself have degrees. It is only the impairments that come with autism — a different set for each individual — that have degrees. And, as we have seen, each of those impairments varies in degree based on the given environment or context. Not only do we want to be seen for what we can do rather than what we cannot, we want to be seen as more than one-dimensional. Labels such as “high-” and “low-functioning” are limited to that one dimension, so they cannot fully (and thus accurately) describe an individual. I am both my abilities and my disabilities. I am both high- and low-functioning.

To describe me accurately you have to describe all of me. Labels can’t do that.

Look Beyond the Surface

Portrayals of spectrumites in popular media will, one day be nuanced enough (fingers crossed) to describe not how we appear on the surface to neurotypicals but to paint a rich and vivid picture of the experience of being autistic. It will take longer to get there if we allow neurotypical perspectives to dominate. Talk about this when you hear someone being described as high- or low-functioning. Keep the conversation going. Unlabel yourself.

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• Why the High-Low Labels are So Wrong!
• What’s in a Name…Er, Label?