The Isolation of So-Called "High Functioning" Autism
- Kelsey Nichols
- 1 hour ago
- 5 min read
Why Functioning Labels Are Harmful
The discourse around autism tends to be typified by extremes. On one end is a child with severe social difficulties, sensory processing issues, and intellectual disability. On the other end of the spectrum is the popular conception of the eccentric savant. The person who —while odd, off-putting, and often seen as less than worthy— makes up for these perceived negative traits by being so good at one particular thing that their genius is seen by everyone around them.
In between these two extremes is everyone else.
Autism is a neurodevelopmental condition characterised by social difficulties and sensory processing issues, as well as focused interests and a deep-seated need for predictability and routine. This condition is diagnosed at three distinct levels. Level one, what many people would label as “high functioning”, refers to people who are generally able to mask their symptoms, which may preclude them from accessing support. Level 2 autism refers to individuals who have more limited social abilities, and as such require “substantial support”. Level three, often referred to as “low functioning” or “profound”, on the other hand, refers to people with severe difficulties, requiring extensive support. However, these colloquial labels do little to elucidate how that person's autism affects them day to day; they tend to emphasise others’ perceptions rather than the individual’s experience.
I, like 80% of autistic women, was not identified in my childhood. Of course, retrospectively, all the signs were there, even in my elementary school report cards: the inability to properly form appropriate social connections, the sensory difficulties, stimming, and more.
When I told others about my diagnosis, I generally received one of two reactions: “I know” or “well, at least you’re high functioning”.
When you go your whole life without being identified, you don’t become autistic on the day you're diagnosed, and certainly I didn’t either. The signs had always been there, but without the diagnosis, everyone assumes that you're “normal”, so your autistic traits are often misinterpreted or entirely dismissed.
The label of “high functioning” can further reinforce the idea that autistic behaviours are moral failings at best, or acts of maliciousness at worst. Many times throughout my life, I’ve heard people angrily telling me, “You know what you did!”. But I never did. Over many years, it’s led me to have a deep-seated fear of people. Most people, to me, are unpredictable. I can never quite predict which of my words or actions, that seem perfectly innocuous to me, will trigger a negative response.
I’m not the only autistic person who feels this way, and science backs it up. Studies have shown that neurotypical individuals make negative judgments of autistic individuals that are not ameliorated by further interactions. Indeed, in one study, neurotypical participants who were presented with short video clips of autistic and non-autistic individuals were more like to say they disliked the former because they appeared awkward and lacked empathy. Importantly, these negative judgments have little to nothing to do with what the autistic people included in the study actually said. Rather, they come about as a result of body language and delivery.
To neurotypical people, these non-verbal means of communication come effortlessly, but this isn't so for autistic people. Even when you're aware that you're autistic, you have to put a considerable amount of effort into learning these unwritten rules. Even more effort goes into putting them into practice.
I was never good at this. My family moved around semi-frequently, and no matter where we went, the story was the same. Once the novelty of being the “new kid” wore off, others would inevitably see how “weird” I really was. And then the bullying would begin and escalate in intensity until we moved again. My teachers and parents would blame me for this: “If you would just act normally, they wouldn’t pick on you!”
Essentially, I had to learn how to act like someone else. The efforts we put into mimicking our neurotypical peers are commonly referred to as “masking” within the autistic community. It's a survival strategy. We can be perceived so negatively by neurotypical people that anything we can do to seem “less autistic” can be the difference between making it in life, or facing significant challenges.
Unfortunately, this is a double-edged sword. Masking may allow an autistic person to maintain a veneer of neurotypical-ness, but it's generally not enough to maintain more than surface-level social connections, or leave enough energy behind to participate fully in other activities of daily living.
What people don't see when they label someone “high functioning” is just how much mental energy goes into behaving just neurotypically enough to be accepted by others. None of this can be an automated process.
Everything you say must be filtered, in real time, through what you have learned through trial and error about neurotypical social interactions. This, I think, is what makes the label “high functioning” so insidious. It can dismiss the struggles that an autistic person may be facing and the extreme efforts that I, and many others, have to make to present that facade of functionality, often to the point of neglecting other aspects of our lives. There is no reward for doing this - those I mask for don’t always like me better for the effort. I often feel like someone who has to put on a show but doesn’t receive genuine care from those around me in return.
Additionally, I find this process so exhausting that if I have to keep it up, I’m often unable to do anything else once I finally get to stop. This includes activities of daily living, like finding the energy to clean, cook myself a healthy meal or connect with the few friends I have. I’m fortunate in that I freelance and can adjust my schedules to accommodate for the time I need to rest and recover from even surface-level social interactions. But when I worked regular jobs, this wasn’t the case.
The constant pressure and inability to partake in appropriate self-care can lead to a phenomenon called “autistic burnout”, where an autistic person — even one who is supposedly “high functioning”— will regress and even lose the skills that they have. Having experienced autistic burnout, it can take years at times to truly recover, and some skills may not return at all.
To the outside world, I may come across as “high functioning”. But to that I ask, high functioning to whom, and for whose benefit? Certainly not mine.