Functioning Labels: misleading, toxic and obsolete

By Annie Crowe

Functioning Labels; Autism; IQ; High Functioning; Co-morbidities; Suicide; Stigma;

** Trigger warning: this content mentions suicide. Please continue to read at your own discretion and safety.

How it all began...

Functioning labels use to be a measure of IQ, where a "Low Functioning" autistic person had an IQ below 70 and a "High Functioning" autistic person had an IQ of 70 or above.

What does this mean?

This classification actually means that someone with "Low Functioning" autism is actually just an autistic person with a co-morbid intellectual disability.

It wasn't a measure of the severity, or functioning capacity, of their autism, but an indicator of additional disability and additional or different support needs.

So, why isn't this helpful?

As with a co-morbidity of having an intellectual disability, autistic individuals with any type of co-morbidity have different support needs. The Functioning Labels only refer to one co-morbidity, and exclude others.

As you can imagine, when people hear "Low Functioning" they immediately think High Support Needs, and when they hear "High Functioning" they think Low Support Needs.

However, this is not always the case and where the harm can occur. This assumption can lead to damaging bias and stigma that can have serious ramifications for autistic individuals.

These functioning labels, don't actually translate to an accurate functioning capacity. They simply indicate intellectual capacity in a very broad and unhelpful way.

We don't call non-autistic people without an intellectual disability "high functioning," so why should we attach that label to autistic individuals? It seems like a moot point. Irrelevant.

These labels lead us to believe that they explain an autistic person's level of functioning capacity, but they do not.

What's the harm?

Functioning labels are simply reinforcing harmful stereotypes and inaccurate assumptions about autistic people. It minimises the support needs of "High Functioning" autistics and it de-humanises the experience of "Low Functioning" autistics.

In 2014, the first large-scale clinical study into suicide risk of those with Asperger Syndrome (the previous classification for autistic people without delayed language or intellectual disability aka "High Functioning" autism) was released, stating that these adults are nine times more likely to experience suicidal thoughts than people from the general population. This has only been further verified in recent years, with a number of studies showing this increased risk.

In 2020, a study of 6 million people in Denmark found that the autistic population have more than three-fold higher rates of suicide and suicide attempt than the general population. Autistic females, as well as those with additional psychiatric co-morbidities, had a notably high risk and are affected disproportionately.

"High Functioning" Lies...

What do you think of when you hear, "High Functioning"?

  • Someone who can hold down a job.

  • Someone who can have a long-term relationship.

  • Someone who can pay their bills.

  • Someone who can feed themselves.

  • Someone who has good mental health.

  • Someone who seems totally normal and capable. Like their diagnosis barely affects them. More of a quirk than a condition.

The Truth...

What don't you think of when you hear "High Functioning"?

  • Someone who suffers in silence.

  • Someone who hides their daily struggles.

  • Someone who is barely holding it together, if at all.

  • Someone who moves jobs frequently, takes a lot of time off, or is in and out of employment. Even if they can explain it away.

  • Someone who puts on a brave face to the world and falls apart behind closed doors.

  • Someone who has developed multiple mental illnesses at the cost of appearing "High Functioning" to the world.

  • Someone who is so exhausted from pretending to be "normal."

  • Someone who is hyper-aware of their differences.

  • Someone who is forced to hide their true nature, or risk being ostracised, bullied or worse.

  • Someone who can barely remember to pay their bills.

  • Someone who has relationships, but none that are deep or long-lasting.

  • Someone who can't keep up with groceries, and lives on take-out or cereal.

  • Someone who isn't "bad enough" to ask for help.

  • Someone who is at a high risk of ending their life.

Maybe they are just a few of these things. Maybe they are more. Either way, these are much more realistic and accurate assumptions of a "High Functioning" autistic person.

This is not High Functioning. This is BARELY FUNCTIONING. And at what cost?

It's usually only a matter of time before it becomes all too hard. When you're living that close to the edge, it doesn't take much to fall off. An illness, an accident, a death, a birth, a new phase of life, new responsibilities, new expectations.

Unfortunately, this is usually the time that the mask comes off, whether wanted or not. Many autistic adults are diagnosed later in life after a big change, or event, inhibits them from continuing to seem "High Functioning," and it's a steep fall.

It's a tipping point when many autistic adults finally get a diagnosis and supports they've always needed, but have been unable to access because they appeared too "High Functioning".

"We must fall apart before we can be put back together"

I heard a quote like this recently, I can't remember where, but it hit me in a very tender spot. Because I, like many late-diagnosed autistic adults, had to watch my life completely fall apart before I was able to access the appropriate diagnosis and help to put myself back together.

It took years of actively seeking help, after completely breaking down, losing my job and my health, before I was seen. As the strands of my life unravelled, and the mask slowly came off, a slew of diagnoses grew and grew. First, it was anxiety, then depression, then PTSD, then chronic pain, and so on. Then finally, five years into this downward spiral, I finally found my answer. I was autistic (and ADHD, but that's two sides of the same neurodivergent coin).

Why did it have to get that bad to get the right help and diagnosis? Because until you're no longer seen as "High Functioning" in society, you are not noticed, you don't receive appropriate help, and you are not SEEN.

Too Little, Too Late

We need to stop using these damaging, inaccurate labels of high, low, mild, severe. All they do is perpetuate stereotypes and limit understanding of needs and capacity.

My ability to appear "High Functioning" left me vulnerable to burnout, co-morbid mental illnesses, complex trauma, identity issues, imposter syndrome, and the list goes on...

I'm not saying that an early diagnosis would've stopped these issues, but it sure would've helped reduce the likelihood of them.

How does IQ impact autism anyway?

Let's argue for a second that IQ does explain functioning capacity and support needs. I want to tell you a story that my Mental Health Occupational Therapist (MHOT) told me.

My MHOT only treats autistic kids and adults, so she has a very unique view into the world of neurodivergent minds. She has young clients, old clients, intellectually challenged clients, and MENSA intellect level clients. Such a variety.

One day, when I was complaining to her (as usual) about how annoyed I was that I couldn't fix a problem we'd been working on, she said something along the lines of this:

I have clients who are not aware of their disability at all [the supposedly "Low Functioning" autistics], but they are far easier to help increase functioning than you [the "High Functioning" autistics] are, being hyper-aware of your differences and difficulties in the world.
With the former, I just have to teach them a new skills and put a system in place so they can do it. If they succeed, great. If they fail, we try again, no sweat.
With the latter, not only do I have teach you the skill (which is the easy part), we have to process the shame and guilt of why you even need the skill to begin with, deal with the disapointment when you can't maintain the skill, motivate you to try a new skill even though you're (understandably) fed up with not being able to overcome it already, and cope with the fear of failing again and again.
It's a much bigger mental battle.

This is just one example of how much more complex the process is in assessing and addressing the functional capacity and needs of every autistic individual.

Don't compare, don't assume.

I don't want to diminish the needs of autistic individuals with a co-morbid intellectual disability. I don't want to over-sell the needs of autistic individuals without a co-morbid intellectual disability. BUT I do want to make a point that we ALL have different needs, regardless of our IQ.

IQ does not equal functional capacity. And we need to stop assuming that it does.

How can we improve?

We can ditch functioning labels, stop perpetuating harmful stereotypes, end mental health stigma, put a stop to ablism, debunk autism myths, educate friends and family on the diversity within the spectrum, and create a more inclusive society.

Most of all, we can continue to work on acceptance. Embrace neurodiveristy.

I hope next time you hear someone say "High Functioning" or "Low Functioning" you pull them up and explain that:

Functioning labels aren't used anymore, as they do more harm than good. They were just an old way to differentiate those with an additional intellectual disability. They don't belong in modern disability dialogue.

Thanks for reading and for opening your mind to the implications of language and labels.

Come say hi and add your thoughts on functioning labels over on Instagram @ndmillennial

Annie xx