Ctioning

3 aprile 2021

Functioning labels aren't fun

Jump to: Where do they come from? So what's the problem? So why do people still use functioning labels? What to say instead Further Reading

Person with low-functioning autism, on the higher end of the spectrum, mildly autistic, Level 2 Autism Spectrum Disorder...

The language surrounding autism is a tangled mess of medical terminology, language created by autistic people, but also words used to belittle us. It can be incredibly difficult to find out which one is which, and it would take too long to list every single term used to describe autistic people, and give an in-depth description of the background of those terms.

What I want to talk about is the language used to differentiate between different autistic people – more specifically, I will talk about the words “low-functioning” and “high-functioning”.

To an outsider, those words might make sense – The way autism presents itself varies widely between different people, so at first glance it seems good to have a short-hand for describing different groups of autistic people. But it takes two minutes of googling to find out that the majority of autistic people do not think that way. In fact, functioning labels are widely rejected by the community; at best, they're just seen as inaccurate, at worst as offensive and harmful.

So, what are functioning labels and what do they describe? Why are they bad? And what language can we use instead?

(Oh and a warning: There are a lot of acronyms incoming)

Where do they come from?

Neither “high-functioning autism” (HFA) nor “low-functioning autism” (LFA) have ever been a diagnosis in either the Diagnostic Statistical Manual (DSM) or the International Classification of Diseases (ICD).

In the most recent revisions – the DSM-V and the ICD-11 – autism is classified as “Autism Spectrum Disorder”. In addition to this label, three things are usually specified:

Language Impairment
Intellectual Disability
(ICD only) Loss of acquired skills
(DSM only) Level of support required

None of these specifiers use the term “functioning”.

To find out where functioning labels came from, we have to look back further, to the 1980's. At this point, it had only been a few years since the WHO first classified “Pervasive Developmental Disorders” – a category including the diagnosis of Autistic Disorder.

“Autistic Disorder” was characterized by “markedly abnormal or impaired development in social interaction and communication” and “a markedly restricted repertoire of activity and interest”. It did not yet specify a delay in verbal speech, which would later become the main difference between “Autistic Disorder” and “Asperger Syndrome”.

One thing that was already known to autism research though, was the fact that when it came to intelligence, autistic children were all over the place. Some had obvious and severe learning difficulties, others were described as “highly intelligent”. To reflect that, autism researchers coined new terms to distinguish between autistic people (primarily children) with intellectual disabilities and those without. That's how high-functioning autism and low-functioning autism came into being. They were never actual diagnoses, just terms used in autism research.

The new diagnostic criteria requires clinicians to simply specify whether or not someone has an intellectual disability or not, making HFA and LFA essentially obsolete.

So what's the problem?

It seems like high- and low-functioning are just outdated terms, but other than that, what's wrong with them?

Well, for one, functioning labels are often used interchangeably with severity labels. Instead of a spectrum, people think of autism as a gradient from “mildly autistic” to “very/ severely autistic”. It's this idea that the further on the autism side you are on this gradient, the more autistic traits you will have, the lower your IQ will be, the more difficulty you'll have with verbal speech, and the more support you'll need with everyday tasks.

By now we know very well that that isn't true. Functioning labels especially suggest a connection between IQ and adaptive skills. But having an IQ over 80 – and subsequently being labelled “high functioning” does not indicate good life skills. Quite the opposite – autistic people with ID (intellectual disability) tend to be as independent as you would expect anyone with the same IQ and age to be. But the higher an autistic person's IQ is, the higher the discrepancy between their theoretical intelligence and their practical life skills will be.

Sometimes people use functioning labels to indicate how well people can mask (hide or suppress their autistic behaviors). This is in fact correlated with IQ test results, but it should not be confused with actually having less autistic traits, or with needing less support. All masking means is that the person can, for some time, make their autistic traits less observable to outsiders. It is not indicative of “functioning”, nor is it healthy.

But functioning labels are often used that way: You're smart, you can pass as neurotypical for a while, so you must be doing fine.

This logic can lead to autistic adults being denied support that they need, all because they may know the answers on a test. They may be unable to find or keep a job, not know how to make friends or how to distinguish between friends and bullies, and be unable to cook, drive, do laundry, or leave the house alone. All of these are common problems for autistic people regardless of IQ, but they may be ignored in people deemed “high-functioning”.

On the other side of this, someone may be able to work in a specific job, have friends, and would be able to learn tasks like cooking, cleaning and doing laundry – but if they're labelled “low-functioning”, they may be denied the agency to do so. People who are non-speaking are also often labelled low-functioning independently of intelligence.

And all of this isn't even taken into account that results on IQ tests can vary a lot for autistic people. Depending on when you take it, you may be labelled as either high- or low functioning.

In other words, functioning labels are vague, inaccurate, and potentially harmful. They are often used to make baseless assumptions – non-speaking people are assumed to have low intelligence, people without an ID are assumed to need no support, and so on.

So why do people still use functioning labels, then?

While autistic people and some autism researchers have called for people to stop using HFA and LFA for years, many people simply don't know. As I've described before, many see autism as a gradient – and if that is how you see autism, the assumptions functioning labels make may actually make sense to you. Trouble is, autism is not a gradient. It's a spectrum.

And then, of course, there are people who do know, but continue to use this language regardless. Many might not do this in bad faith, but we need to talk about those who do.

The thing with functioning labels is that theyre so vague, they can mean whatever people want them to mean.

Let's pretend I'm the parent of an autistic child and want to talk over autistic people. I do this by putting autistics into two groups: 1. Every autistic person who is able to communicate their opinions on autism to me is “high-functioning”. Their opinions aren't relevant to other autistic people. 2. Those who can't do that (or who i don't listen to because they don't use conventional methods of communication) are low-functioning.

Therefore, there are two kinds of autistic people: 1. Those whose opinions dont matter (high-functioning) 2. Those whose opinions we don't know, so other people – their caregivers – have to “talk for them” (low functioning)

And already, you have a method of portraying your own opinions on autism as more important than those of autistic people themselves. This can be especially harmful when it's used to promote dangerous autism “treatments”/“cures” like MMS (bleach) or myths like vaccines causing autism.

So what do I say instead?

Obviously not all autistic people are the same. We all have different struggles, different strengths, and different personalities. And sometimes these differences are important to the conversation, and we need the words to describe them. When doing this, we need to be more specific than putting people into two categories created to simply describe IQ. The sole fact that functioning labels are currently not only used to describe IQ, but many other things, is proof that we need more nuanced language regarding autism.

So next time you're about to talk about your “low-” or “high-functioning” autistic relative, think twice about what it actually is you want to describe. What aspects of their autism are relevant to the conversation? Is it their support needs? Their learning abilities? Their speech abilities?

Here are some examples:

❌”My cousin has low-functioning autism, so he can't talk.” ✅”My cousin is autistic and nonspeaking, so he communicates through sign language.”

❌”When I was a child, I had LFA, now I'm high-functioning” ✅”I'm autistic, and I was in special education as a child. Now I live alone and have a job!”

❌”My daughter is autistic, but she's high-functioning, so I don't understand why she can't do simple things” ✅”My teenage autistic daughter is very good at school, but she needs help with chores.”

❌”He's autistic? He must be really high-functioning.” ✅”He's autistic? I didn't notice, he hides his autistic traits quite well sometimes.”

❌”I have a sister with low-functioning autism” ✅”My sister is autistic and has an intellectual disability”

❌”My autistic son can't be left unsupervised, he is very low-functioning” ✅”My son can't be left unsupervised, because he's autistic and often doesn't see when a situation is dangerous”

Using specific language like that isn't only more respectful to the autistic person you're talking about, it also gives the person you're talking to much more information.