COMMENT | Functioning labels such as “high functioning” and “low functioning” for autism are harmful and damaging. People who use these labels in reference to persons with autism pre-judge their ability and people who hear them assume their accuracy even before giving them a chance.

Let me explain this in a more relatable way. Let’s say you apply for a job. You are asked to send in a CV. You send it in and get an e-mail back almost immediately. They tell you how impressed they are by your CV and how perfect you would be for the job, but they inform you that you forgot to attach a photo and to send one immediately. You send them a photo of yourself in a separate e-mail. 

Two weeks go by. No reply. No e-mail. How does this leave you feeling? You were not even given a chance because an assumption had been made about you from your picture which you could do nothing about. You were labelled.

Labels and assumptions are detrimental to persons with autism because they are generally created by others and limit the support, accommodations and opportunities for the autistic community. The worst thing about labels is that they are difficult to change and they determine how others view and treat those who are labelled.

Autism functioning labels may also shut down important conversations and in effect silence autistic voices.

How autism functioning labels came about

The terms “high functioning” and “low functioning” first came about in research in the 1980s to distinguish between people who have autism and those who have autism with an intellectual disability (ie with an IQ of less than 70). 

However, the trouble with this is that these functioning labels do not actually identify the needs of the person. A person can be both autistic and also academically successful. 

There is now a realisation that such labels can be harmful and limiting. Unfortunately, they continue to be used to describe the “types” of autism which mould societal perceptions and stigma.

Autism labels aren’t helpful and don’t tell the full story

Autism labels are neither helpful nor accurate. In Malaysia, we tend to differentiate “low functioning” and “high functioning” in terms of the level of verbal communication and what we assume to be their level of understanding. 

We generally refer to those who are non-verbal as “low functioning” and those who are verbal as “high functioning”. The truth is, someone may be labelled “low functioning” or non-verbal but still be able to comprehend most of what is going on around them. 

Those who are “high functioning” tend to be complimented on being able to “function” and this huge misunderstanding causes society to disregard their very real struggles and label them as “just a little quirky”, “eccentric” or “a bit socially awkward”. 

But what is ignored is that far beyond verbal communication, people with autism function in different ways depending on varying external and internal factors whether or not they are labelled “high functioning” or “low functioning”.

As Kat Williams, an autism campaigner who is herself autistic, wrote in a journal in the National Centre for Mental Health in Wales, “Don’t belittle someone’s diagnosis because you feel they’re ‘too capable’ to be autistic, but also don’t discuss a non-speaking autistic person’s difficulties as if the person isn’t present”. 

Williams further describes this eloquently by saying “High-functioning is not how an autistic person experiences being autistic, it’s how society experiences the autistic person”.

For example, one person may be able to drive independently, which would lead you to label them as “high functioning” but it doesn’t take into account that the same person cannot have a conversation without experiencing extreme anxiety and a meltdown. 

The reverse is someone who struggles to tie their own shoelaces which would lead you to label them “low functioning” but it does not take into account that the same person may be able to do a complex puzzle.

Even though both persons with autism need support, the labels may well stand in the way of them getting the right kind of assistance and how we perceive their abilities. Functioning labels can never fully capture the richness and complexity of an autistic person’s life, much less their needs.

It is ableist and furthers the divide in the autism community

Kristen Bottema-Beutel, an associate professor at Lynch School of Education and Human Development in Boston College describes ableism as “… any language that, when used, has the effect of marginalising disabled people”.

In our society, “high functioning” is seen as an achievement because it means that someone is only a little disabled and “low functioning” as terrible because that means they are “severely disabled”. In other words, being “a little disabled” is way better than being “severely disabled”.

Autism functioning labels also further a divide in the autism community. I have personally seen parents of children with autism wrongly criticise or praise other children with autism whom they label as “low functioning” and “high functioning”. 

I have heard phrases such as “Your child can talk and understand, are you sure he’s really autistic?”, “Well they’re not that kind of autistic” and “You are lucky because your child can talk so they can work” carelessly thrown around.

There is therefore discrimination against children based on how they are labelled. People who are “low functioning” tend to be stigmatised, due to their inability to communicate verbally or to be fully independent and in the process, we ignore the incredible things they can offer. 

High functioning persons on the other hand may not receive adequate support because it is assumed they do not need it.

Changing the narrative

April is Autism Awareness Month. I call myself an advocate in progress, but I also believe that everyone can be an advocate for persons with autism. 

This month, let us think about persons whom we know with autism. Let us start by correcting or educating our friends and family about the proper terms to use when it comes to describing someone with autism. 

Instead of “low functioning” and “high functioning” which are labels that are a judgement of their ability which are not necessarily accurate, let us start using “low support needs” and “high support needs” instead to distinguish the level of assistance they require. 

This autism awareness month, let us continue to change the language and narrative that we use.

Let us treat persons with autism with care and dignity and stop burdening them with unnecessary, erroneous and misguided labels. 

SHARANYA RADHAKRISHNAN is co-founder of Gem & Bread Special Needs Support Group which works to uphold the dignity and rights of all persons with special needs while striving towards building an inclusive ecosystem.

The views expressed here are those of the author/contributor and do not necessarily represent the views of Malaysiakini.