The terms high-functioning and low-functioning may seem like perfect descriptive words to people who are unfamiliar with autism, but the truth is that these labels are ineffective, and they inaccurately represent the levels of need or severity a person experiences with autism.
The bottom line is that these are dangerous labels to pin on autistic people.
The Roots and Inaccuracy of High-Functioning and Low-Functioning Labels
In the 1980s, the terms high-functioning and low-functioning were first used in research to distinguish between autistic people and those with an intellectual disability (based on an IQ score of 70 or lower) vs. those who just had autism.
These functioning labels are very much outdated because we have since learned that an autistic person’s needs are independent of one’s IQ, and IQ does not always impact functioning.
Sadly, once the research and medical community came to terms and realized that the high-functioning and low-functioning labels were inaccurate and unneeded, the general population had already noticed the terminology and the labeling continues to be used today.
Why High-Functioning and Low-Functioning Labels are Harmful to Autistic People
Laura Tisoncik, autistic self and disability rights advocate, founder of an early autistic community (Autistics.org) in 1998, and blogger at Circle of Moms, explains the harm in placing a label on autistic functioning in her quote:
“The difference between high-functioning and low-functioning autism is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored.”
Andy Burns, writer and YouTube creative at Indie-Andy, blogs how high and low functioning labels are false and non-supportive for autistic people:
“I am not “high-functioning” or “low-functioning”: I am simply being.
Speaking is not the only way to communicate.
To me, it is hurtful to label someone as “low-functioning” because traditionally autistics who are given this label are non-verbal (unable to communicate verbally). This label dismisses the voice that these people have and their abilities do not get recognized.
Just because someone is unable to speak through conventional methods, it does not mean that they have nothing to say.
“High-functioning” autistics still need support. The label of “high-functioning” autism – which I am often assigned – is also harmful.
Because of being labeled as “high-functioning”, some of the challenges I face are not taken seriously, with whether I am truly struggling being called into question. The label is misleading because it implies that “high-functioning” autistics can function better than “low-functioning” autistics – this is not the case. “High-Functioning” autistics might be able to manage everyday tasks with little difficulty but struggle with sensory processing. With these autistics, their needs might not be recognized, potentially hindering them later in life if they do not receive appropriate support early on.”
Steven E. Gutstein, Ph.D., RDI® Chief Executive Officer, states:
“Anyone with autism doesn’t mean high function, low function, middle function, whatever. Because everyone, we believe, deserves an opportunity to develop the internal mental resources that they can … so they can self-manage themselves in a complex, dynamic world. They can achieve autonomy; they can achieve relationship and mastery and continue to develop and grow…”
Dr. Gutstein describes the desperate feelings that can come with needing the right type of support, which is often not provided when an autistic is labeled high or low-functioning:
“I can’t do anything myself to remove myself out of this certain situation, to improve my situation. If I don’t get the right type of support from the outside, then I can’t make a difference in my own life. Then nothing’s (going to) change.”
When the labels low or high-functioning are applied, the ‘real’ support that autistic individuals need often falls to the wayside.
An autistic girl labeled high-functioning may perform well in school, for example, and she may possess social coordination, yet she may internally struggle, perhaps with sensory processing, and her mental well-being may suffer.
She can live with hidden anxiety and depression because she is good at covering it up, and sadly when she feels her situation may never change, she may have thoughts of suicide.
An autistic boy labeled low-functioning, for example, may not do so well in school, but he may possess innate artistic abilities.
He may lack in social coordination, and because he has been labeled low-functioning (and therefore unable to change), he may not receive the support that he needs to grow his abilities and to develop into an independent adult.
What To Use Instead of Labels
Whether we are neurodivergent or not, we all have something in common.
We each have strengths and weaknesses.
We are all different – this is our inherent design.
So, instead of applying a low or high functioning label to describe a person, we should simply address the person as autistic.
It is appropriate, and helpful, to then say what the autistic’s abilities or needs are.
Andy Burns applied this description to himself:
“I am able to communicate verbally and I can do most things with little to no support. I may need help when it comes to crowds or loud places, as well as more time to process my surroundings. This gives a very brief idea of what my abilities are and the areas in which I might need assistance. It also does not have the expectation of never needing any support that the high-functioning label suggests.”
The basis for this is to not label the person as someone having autism with some level of functioning, as if it were a disease that can or cannot be helped. Instead, address the individual as an autistic (person) with concise needs and abilities.
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