Don't call me high- functioning
With kind permission from one my clients Ruth Ward, I am sharing the blog she wrote for her organisaion as part of Autsim Awareness week. Thank you Ruth for sharing your experineces and insights.
Autism is a spectrum condition. That’s one of the things that everybody knows who knows anything about autism.
The natural way to think of a spectrum is a line running from over here, to over there. In this simple version, at one end you have the person who is autistic-but-you’d-never-guess, and at the other end is the unfortunate person whose autism is so severe that they are unable to carry out many basic tasks for themselves. The spectrum, in other words, is often imagined to be one of severity.
Like so many other useful mental models, this one breaks down drastically when applied to the messiness of real life.
A key characteristic of an autistic brain is that it filters information differently from a Neurotypical brain. That means that, from birth, an autistic person is experiencing the world in a profoundly different way from their Neurotypical counterparts.
One example of this, for me, is that my brain does not recognise human facial expressions very well. I struggle in emotional IQ tests to tell a frown from a smile, surprise from fear, or (quite probably) joy from constipation. My emotional feedback loop gives me a trickle of information where a Neurotypical person would get a flood.
Getting positive responses from other human beings is, for a baby, quite literally an existential challenge. I learned early on that other people are wildly unpredictable, that they are hard to read, and (quite probably, though of course I can’t remember this directly) I believed that my life depended on learning these skills. There’s motivation for you!
As a result, like many autistic people, I ‘mask’ my differences. I’ve learned how to make eye contact and, most of the time; I can keep my own expressions in a range that doesn’t trigger anybody’s creepy uncanny valley reflexes.
These things are as natural to me as riding a bicycle, which is not the same as being as natural as breathing. Unlike most Neurotypical people, I only have to be a little tired and stressed before I start slipping up.
Masking is, mostly, a choice. Though it’s fair to note that the line between choice, habit, and instinct can get blurry. It has its costs: like riding a bicycle, masking takes energy and a long day of it can leave me drained. It also creates a stronger contrast when my autistic traits do show up, making it harder for people to believe that my mistakes are due to a disability rather than deliberate awkwardness.
The term ‘high functioning’ gets used to describe autistic people who don’t, to the casual observer, seem to be autistic. It comes with the built-in assumption that an autistic person’s functioning (i.e., basic ability to exist in the world) is always in question.
On top of that, weirdly, it’s a less useful term for an autistic person than it might be for a Neurotypical person. The category ‘Neurotypical person’ includes people who struggle with basic tasks like washing and dressing. It also includes people with average abilities, and a few with extraordinary skills.
Characteristically, a Neurotypical person tends to have roughly similar levels of ability in different areas: if they are average-to-good at emotional intelligence, they tend to be somewhere between average and good at spatial reasoning too, for example. Naturally – after all, what we define as ‘average-to-good’ is based on analysis of the results of lots and lots of Neurotypical people taking these tests.
If a Neurotypical person scores highly on one kind of test, therefore, they are likely to score highly at lots of others – and could accurately be described as high functioning. They might not thank you for pointing this out, however. Who wants to think that their ability to function is being judged by others, even if the conclusion is that it’s a marvel to the world at large?
Autistic people, by contrast, have a characteristically ‘spiky’ ability profile. Compared to the Neurotypical results used as a yardstick for these kinds of tests, an autistic person is likely to show areas of strong ability, and areas of contrasting disability. For example, in a room with ten people all taking standard IQ tests, I am likely to be in the worst two at reading emotions, and in the top two for spatial reasoning.
What does that mean in the workplace? Well, an autistic member of staff might complete some tasks in a fraction of the time their manager expects – and then be exhausted or extremely stressed by something that a Neurotypical person could handle with ease. The exact pattern of strengths and weaknesses is different for different people, so it can’t be extrapolated from one autistic team member to another. Two big assumptions to avoid are:
1) Defining what somebody can do based on their strengths, which puts tremendous pressure on that person and can lead to burn out.
2) Defining what somebody can do based on their weaknesses, which is a huge waste of potential talent.
The strengths and the weaknesses are two sides of the same coin. Managers need to have open and supportive discussions with each autistic team member about their unique blend of abilities, and how to deploy them most effectively. Sometimes that might mean shifting tasks from one person to another; sometimes it might be as simple as allowing a bit more time, or answering a few more daft questions, as an autistic person processes what is obvious to everybody around them. Either way it frees up that person to excel, and the whole team benefits.
In practice, an autistic person who is described as high functioning tends to be someone who has found ways to capitalise on their strengths and hide, or work around, their weaknesses. Like many other kinds of success, that depends on a combination of luck, hard work, luck, supportive family and friends, and more luck.
If you are autistic and are fortunate enough to have a set of strengths that the modern world values, and weaknesses that can be handled; if you learn how to deal with the stress of getting important things wrong at unpredictable intervals; if the people around you are understanding and supportive; then you too might one day hear some lovely well-meaning person say, as if it were a compliment, “you’re autistic, really? Well you must be very high functioning!”
At which point you can send them to read this blog post, and perhaps it won’t happen again.