What do people mean when they say “high functioning” or “low functioning” autism?

As you learn more about autism, you might come across the terms “high functioning” or “low functioning” autism.  Talking about autism as high or low functioning is a dated way of talking about the support needs of autistic people.  Overall, that terminology is too broad to accurately describe the strengths and weaknesses of individuals with autism, and as a result is not really used today.  Below, you can read about the history of “high” and “low” functioning terminology and learn about other ways to talk about the strengths and weaknesses of autistic people.

The Terms “High” and “Low” Functioning Autism

Autism Spectrum Disorder (ASD) is described as a “spectrum” because it has a wide range of symptoms and those symptoms can vary greatly in severity.  Because of this, people had previously adopted the terms “high” and “low” functioning to describe capabilities of individuals with autism.  However, there is controversy surrounding those terms, and there is a movement to change that language.

History of “high” and “low” functioning

The use of the terms “high” and “low” functioning began being used more than 40 years ago by the medical community as a way to label and group individuals with autism.  It was a method to describe how well autistic people operated in terms of their intelligence, language capabilities, social skills, and more.  Although this was the intended use, over time the scientific community began using these terms more broadly and in ways that down-played the capabilities of individuals with autism.  You may still see or hear these terms today, but there is a movement toward using a new classification system to describe autistic people.

What’s wrong with saying “high” and “low” functioning?

The terms are used too broadly:  These terms have become a shortcut to explaining whether someone has a high or low intelligence quotient (IQ), which is not an accurate way to explain someone with autism’s strengths and limitations.  

They are poorly defined subgroups:  There isn’t clear criteria for what sorts of ability levels would qualify as “low” or “high” functioning.  For example, how impaired would someone’s language skills need to be to be considered “low functioning?”  What sort of language ability would qualify as “high functioning?”  And, how would you classify someone if they had poor language skills but good adaptive skills?

These terms can create stigma and can be dehumanizing:  This language can limit who a person is to their diagnosis.  Those limitations can be harmful because:

• These terms can oversimplify the complexity of autism and the experiences that autistic people have.
• “High functioning”: People may ignore the struggles that “high functioning” autistic people face (sensory sensitivity, mental health, social skills, etc.) and fail to give them the support they need.
• “Low functioning”: People may neglect the strengths of “low functioning” autistic people.

The picture (below) from Autism_sketches is a useful way to think about how different people with autism have different strengths and weaknesses.  In this example, we see an autistic person with greater social and perceptual differences, but few repetitive behaviors and good emotional regulation.  Excluding that person from a craft activity based on their social skills might not be fair since they may still be able to self-regulate well enough to enjoy the activity.  Similarly, though that person has good self-regulatory skills, that person probably wouldn’t enjoy going to a party because of their social and perceptual differences.  Making assumptions about the person in this example could lead to both under-estimating and over-estimating their abilities. 

Perspectives from Autistic People

After all of this discussion, you might be wondering what autistic people think about the terms “high” and “low” functioning.  Below are quotes from autistic participants in a research study explaining their opinions on the “high” and “low” functioning language. 

• “Grouping us by how outsiders perceive our level of ability is inaccurate and harmful.”
•  “We are all *just autistic.* We are all completely different from each other.”
• “Because I am seen as ‘high-functioning,’ it means people are less likely to give me accommodations that I need to be successful.” 
• “My brain formed a bit differently and that doesn’t make me sick or disordered. It only appears this way because of the pressures and expectations placed on individuals by our current societal model.”
• “Language I do like is language that empowers us and allows us to self-identify.”

Quotes are from “Autism-related language preferences of English-speaking individuals across the globe: A mixed methods investigation” by Keating et al., 2023

The New Classification System 

An improved system has been developed that specifies the severity of symptoms that autistic people have, rather than minimizing the experiences of autistic people.  There are 3 levels that specify someone’s social capabilities and restricted and repetitive behavior patterns, with level 1 being the least severe and level 3 the most severe.  

Ask, Don’t Assume 

In addition to knowing this new level system, it is important to have conversations with the autistic people in your life.  You can ask them what descriptors they prefer.  Some may have no preference while others may prefer specific terms, such as high-support needs, person with intellectual/language/social disabilities, etc. . .  .

Conclusion 

Regardless of the system of classification, it is important to remember the ultimate goal is for society to promote an inclusive and understanding environment.  Because of the diversity in autism spectrum disorder, it is important to stay mindful of our language and use a system that values and respects people, rather than limits them. 

References

Describing function in ASD: Using the DSM-5 and other methods to improve precision

Autism | National Institutes of Health (NIH)

Autism Spectrum Disorder – NIMH

Autism-related language preferences of English-speaking individuals across the globe: A mixed methods investigation

Autism Diagnosis Criteria: DSM-5 

Article By: Sarika Mahajan and The Autism ToolKit