The Problem With Functioning Labels

Most autistic people are given a functioning label at some point in their life. Examples of functioning labels include:

• “High-functioning” or “Low-functioning”
• “Aspergers” or “Kanners”
• Classic autism
• Autism level-1, level-2 or level-3
• Mildly autistic or servery autistic
• High support need and low support needs

I used to be in support of these labels, after all every autistic person is different. If you have met one autistic person, you haven’t met all autistic people, you have only met one autistic person. But what I didn’t do was stop to think of why I support these labels and the harm they caused me and other autistic people.

The major problems with functioning labels are

• Not agreed upon definitions
• Being a “catch 22”
• The autism spectrum being “non-linear” and defeating its own goal of seeing autistic people as individuals
• Being used to shut down autistic voices
• Labelling autistic people like machines

Not Agreed Upon Definitions

I’m not sure when I realised that functioning labels are harmful. I think it was first looking at the meaning of the labels. For GCSE English, I was tasked with giving a presentation on a topic I felt passionate about. I chose neurological disorders and obviously wanted to explain that autism is a spectrum. I first got the notion that there was a problem with functioning labels when I struggled with finding the meaning of “high functioning” and “low functioning” as every source had a different definition.

This got me thinking “what does it mean to be ‘high functioning’ or ‘low functioning’?”. If professionals don’t have consensus then do these labels even have meaning? And if people disagree on the meaning of the labels, then are they even helpful in describing the needs of an individual autistic person?

Functioning Labels are a “Catch 22”

No matter whether you are given the label “high functioning” or “low functioning”. It has consequences and these consequences are always negative. The consequences vary depending on which label you are given. This catch-22 has been summarised by Autism Rights Activist, Laura Tisoncik as “The difference between high functioning and low functioning is that high functioning means your deficits are ignored and low functioning means your assets are ignored.”

Problems with the “high functioning” label

TW: The inferiority-superiority complex, strong ableism, both internal and external, and mentions of suicide and self-harm

As someone who is often labelled high functioning, I have experience with how it feels to be referred to as such.

I was diagnosed with autism when I was 8 but almost every “professional” I saw would tell me that I really had Asperger’s. They meant that as a complement and I took it, believing it to be one.

I really detest admitting this, but I liked being considered “high functioning or having Asperger’s”. It meant that I had the superior form of autism. I could look at those at them in a way to pity them as the label of “aspergers conditioned me to feel like I was superior to them. I would think “I’m so lucky, look at these people who can’t even talk and have to scream all the time”. When someone told me that they were autistic, I would ask what type of autism they had, hoping they would say they have “classic” or “low functioning” autism so I could look down on them as my inferior. And often I did.

You may think this meant that I had high self-esteem but I didn’t. I actually had low self esteem. I thought being “high functioning” meant that I had to make myself appear as neurotypical as possible. I could do everything the way a neurotypical person can. If I could not pass as neurotypical, I would either literally or metaphorically beat myself up almost every time I did something autistic such as have a meltdown, have executive dysfunctioning problems or even something similar like not understanding a metaphor. Beating myself up would range from thinking “I have Asperger’s, not classic autism. I shouldn’t have done that. Only young children or low functioning autistics do that. You are a baby and should have learnt to cope better.” Feeling the need to self-harm or actually self-harming to punish myself for being a failure and commit suicide or thinking about committing suicide.

With counselling and support I got better.
Many autistic people are not so lucky…

End of TW

This pattern of thinking and behaviour stems from the myth that those who labelled as “high functioning” need less support than those labelled “low-functioning”, which leads to the needs of those labelled as “high functioning” being ignored. One day, approximately two years ago, I was having a conversation with my mother, who is neurotypical, about medical appointments we attend. We laughed at the doctors who speak to her about me, not with me (under the very false assumption that autistic people are incapable of self-advocacy) and ask her “how would you describe [your daughter’s] autism?”. She explained to me she didn’t know how to answer. “If I labelled you as high-functioning then people would think there aren’t things you find tough.” And that is very true.

A lot of neurotypical people, even health care professionals, think that those given a “high functioning” label have little or no additional needs, when in reality giving us the “high functioning” label puts pressure on us to mask to point of passing for neurotypical, and embarrassed to ask for help when we need it. This myth places autistic people in situations where they cannot cope. There is nothing wrong with being autistic and there is nothing wrong with needing & wanting help.

Problems with the label “Low Functioning”

TW: R slur, internalised and externalised ableism, Neglect

I don’t remember ever being labelled low functioning so I can only speak on behalf of others. To learn about the impact I asked in the neurodiversity community about the impact being labelled “low functioning” had on their lives.

The major problems with the “low-functioning” label is that the individuals who are labelled as them are seen as inferior to those labelled “high functioning”, which is of course not true as human diversity is a wonderful thing. No-one is inferior to anyone else. Being seen as inferior can really impact a person’s self esteem. And it leads to being called ableist slurs such as the “r” slur. By calling someone “low-functioning” you are calling them less of a person or even subhuman.

A person labelled “low-functioning” will be believed to be incapable of self-advocacy which is simply not true. There are many people who were labelled “low functioning” who are self-advocates and peer-advocates. Everyone can communicate in some way, whether it’s with their mouth parts, sign language, Makaton, using technology.

One autistic person contacted me to give their input in this article. When asked to describe how the “low-functioning” label impacted them, they described it “like a self-fulling prophecy”. I didn’t understand what they meant by that but now I do. They are in an endless cycle of putting themself down. They try to achieve something, don’t complete it to their satisfaction then tell themself “I’m a low-functioning autistic, I will never be able to achieve anything in life.”

From speaking with this person, I came to realise something. I often thought that many of those labelled “low-functioning” were mollycoddled. And quite often many people given this label are. But this individual is not, they are neglected. They are seen by their family as having too many additional needs to meet so they feel that they might as well not meet any of them at all. Their family doesn’t even want to define their needs because they see that as a task too tedious.

A “low-functioning” label doesn’t just hurt autistic people. It hurts their carers, parents, and families. I think it’s fine to assume that families want the best future for the youngest members and by giving a child the “low-functioning” label, you are saying that they’re future will never account to anything, which is simply untrue.

Problems With Both Functioning Labels

No matter if you give an autistic person the label “high-functioning” or “low-functioning” it can cause problems. Mainly for the individual needs and self-esteem of the autistic person. Often very severe problems that will have an impact on them for the rest of their lives. Like it did for me. But I’m not the only person who has been impacted by functioning labels. Almost. Every. Single. Autistic. Person. Has. Been.

The Autism Spectrum is Non-Linear and Functioning Labels Defeat the Goal of Seeing Autistic People as Individuals

Most people think of the autism spectrum as something like this:

A line with “high functioning”, “a little autistic”, “mildly autistic” at one end and “servery autistic”, “low functioning” or “really autistic” at the other end. This cannot be further from the truth. While everyone has a different definition of the two functioning labels, whether someone is labelled “high” or “low” functioning is usually based on two traits — if they can communicate verbally and/or their intelligence levels.

In reality the autistic spectrum should look like this:

With making the autistic spectrum a line, it ignores other parts of what it means to be autistic such as executive dysfunction, stimming and nonverbal communication. Let’s take the fictional autistic people, Alice and Bob. Alice scores below average on an IQ test and couldn’t communicate verbally until she was 7. However, she understands most nonverbal communication, has little executive dysfunction and has average fine and gross motor skills.

Bob has an above average score on an IQ test and could communicate verbally at the same milestones as his neurotypical peers. However, he has poor fine and gross motor skills to the point he cannot dress himself and interprets most metaphors literally. He cannot understand most gestures and facial expressions. He needs a list to complete tasks.

Who do you think is more likely to be labelled as “high functioning”, Alice or Bob? Usually Bob. Despite Alice having fewer needs than Bob she is usually labelled “low-functioning”, simply based on her verbal communication delay and score on her IQ test. This leads to Alice having her needs overestimated incorrectly often in a patronising way, while Bob not having most of his met, sometimes if at all.

There are plenty of autistic people like Alice and Bob. Instead of looking at the individual needs, people look at their functioning labels. This completely defeats the purpose of functioning labels to communicate that every autistic person has different needs.

Autistic people should be able to communicate their own needs and if they can’t self advocate they should have their needs explained to the person or people who need to know them in a few sentences not with one meaningless word. Let’s look at an example with another fictional autistic person, Jane. Jane is only four years old so needs an adult to advocate her needs to her primary school teacher. Below is an example of how to explain the needs to her primary school teacher:

Jane’s father: “This is Jane my autistic daughter”
Jane’s teacher: “Ok. Is she high functioning or low functioning”
Jane’s father: “High functioning”
Jane’s teacher: “Wow, that must be so great.”

As you can see, the conversation is at it’s best pointless and worse ableist. Jane’s needs are not learned so her teacher will have no idea how to meet them, which could cause her to become distressed. Her teacher also expressed their belief that those labelled “high functioning” are superior to those labelled “low functioning”.

Instead the conversation should have went like this:

Jane’s father: “This is Jane, my autistic daughter.”
Jane’s teacher: “Nice to meet you Jane. What are her needs?”
Jane’s father: “She finds the noise of vacuum cleaners distressing as well as a noisy classroom environment so if you can try and avoid those and keep the class quiet as best as you can. She can’t tie her laces or take off her jumper.”
Jane’s teacher: “I will try my best to avoid vacuum cleaners and keep the class quiet. You should talk to the SENco and get an individual education plan.”
Jane’s father: “That’s a good idea. Thank you.”

This conversation was far more productive. Jane’s teacher learned from her father that vacuum cleaners and a noisy environment are distressing for her so should be avoided. Furthermore, they learnt that she struggles with fine and gross motor skills and requires assistance to tie her laces and take off her jumper. To ensure Jane’s additional needs are an Individual Education Plan is going to be drawn up.

The “functioning” of Autistic People Fluctuates

Autistic people ability to function also fluctuates. Just like their neurotypical counterparts, can appear to be “high functioning” and “low functioning” at different times, in different situations and with different groups of people. If you’re neurotypical and reading this, I’m sure you’ve had a day where you “woke up on the wrong side of the bed”. Or a day where everything goes wrong for you. The same situation happens to autistic people.

Functioning labels are often given to autistic people when they’re children and never change as they grow older. This ignores the ability to change and grow as a person. An autistic person can learn skills as they age. For example, before I was 15, I couldn’t tie my shoelaces but that was a skill I learnt. Autistic people, like their neurotypical counterparts, can gain new disabilities or loose skills they once had.

Functioning Labels are Used to Shut Down Autistic Voices

Over the last two decades more and more autistic people have begun to self-advocate and peer advocate. But those who can make a youtube video or write a blog post are shut down. They are labelled “high functioning” and shut down with sentences such as “You are high functioning! You don’t understand what it’s like to be really autistic like my child/client!”

It’s not just people who were always labelled “high functioning”, people who were labelled “low functioning” and have chosen to speak out are relabelled by neurotypicals as “high functioning”. This is for no other reason then to shut them down and ignore what they’re saying. The label becomes a way to narrow down autistic people to a single skill, which demolishes their work and real life experiences. Some of these people continue to be labelled as “low functioning” but are told by ableists that what they are saying does not matter because they don’t understand what they’re talking about.

A good real world example of this is the autism rights activist Amy Sequenzia. She was labelled “low-functioning” but since she started her activism and advocacy people have accused her of being a high functioning autistic who doesn’t understand the issues “real” autistic people think.

Functioning Labels Given to Autistic People are Similar Those Given to Machines

When I and many others hear or see the word “function” we usually think of machines or robots. Robots, machines and computers are often described as “malfunctioning” or “perfectly functioning” Autistic people are not machines or robots. We are people. Labelling us in a similar way to machines causes us to become dehumanised.

Dehumanising autistic people causes themselves and others to place value on what they can and cannot do. And they shouldn’t. As people’s worth is worth far much more than that.

Labelling people similarly to what machines are labelled is often inaccurate as human beings are far more complex. Our strengths and weaknesses vary widely as every human being is unique. And within ourselves there are weaknesses that can be improved and strengths we can lose.

I am not a machine
I am a person.
I have strengths and weaknesses.
I am a human being.