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The problem with autism functioning labels - and how to fix it.

RoboKind Community Team Jul 22, 2021 8:45:00 AM
Autism functioning labels are detrimental to autistic students.

It is often one of the first questions that might be asked upon hearing that someone is autistic: “Are they high-functioning or low-functioning?” 

This traditionally-used terminology is intended to describe how well an autistic person can function independently and is often still used by medical and educational professionals. For instance, Individualized Education Plans (IEPs) might use “high-functioning” or “low-functioning” autism labels to assess how much support a student needs during the school day. 

But Daniel Lance, an autistic content developer on our team at RoboKind, explains that these terms “...categorize [autistic] people based on an abstract baseline for normalcy in a way that can affect how they are treated and even, in some cases, what rights they can have.”

 

Why autism functioning labels are harmful

The most pressing issue with functioning labels is that the label may affect how people interact with an autistic person or even the services available to them. A “low-functioning autism” label might mean that a student is placed in a self-contained classroom, separated from other students. They may not have an opportunity to take part in an AP class or participate in a class field trip because they’ve been labeled as such. A student labeled “high-functioning” might be in the regular classroom but miss out on supports that would help them manage their response to sensory stimuli.

These labels rarely tell the whole story. Mary Shaw, a former SPED teacher, central district administrator, and behavioral specialist with over 25 years of experience, shared an example of how these terms can go wrong for students:

I worked with an autistic student that was labeled [high-functioning]…. He was great with academics! As a matter of fact, he would stay after school and tutor students that needed that extra 1:1 time, which they seemed to really like getting from him. But he needed more support with self-regulation…. He could shut down and become aggressive for a couple of days. Everyone referred to him as “high-functioning” because of his cognitive abilities, which would confuse some of his general education teachers [when he would become aggressive or shut down in class]….

This type of scenario is common. In this case, the “high-functioning” label meant that teachers didn’t understand that some aspects of his personality may require support while other areas might not. 

Shaw goes on to explain, “Many students are not allowed to be included in the full scope of educational rigor due to their given label. They also might not have opportunities to participate in extracurricular activities like sports or school-based clubs and organizations.”

 

The spectrum is not linear.

Functioning labels for autism – and even the term spectrum – invite neurotypical people to think of the autism spectrum as linear. 

It isn’t. 

There are several areas in which autism affects an autistic person, which might include: 

  • sensory stimulation

  • perception

  • executive function

  • language 

  • motor skills 

One suggestion is to consider the autism spectrum as a radar chart or a wheel, where each aspect is measured as part of a whole. If all of these aspects are taken into account, it becomes more challenging to think of autism as linear.

Pulling away from the linear model of autism enables all of us – autistic and neurotypical – to think of the whole person and to not simply focus on so-called deficiencies. With this change in thinking, an autistic person can be supported where they need support and independent where they are able.

 

Better terms than “low-functioning” or “high-functioning” autism

Daniel Lance’s suggestion? “‘High- and low-support’ is a more realistic way of discussing people based on what accommodations or help they may need to reach whatever version of equity they are trying to reach.”

The idea of specifying an autistic person’s support needs rather than functionality seems like a much better way to identify what that person needs and doesn’t need. Jessica Flynn, an autistic writer and disability advocate, explains it this way: “I’m not embarrassed to admit I need support. Because supports are accessibility. They make an inaccessible world accessible.”

For example, an autistic child’s parent might say something like, “My child has autism and sometimes needs support managing sensory overstimulation in busy environments,” or, “...needs support with fine motor skills.” Explaining autism in this fashion gets to the heart of the autistic person’s support needs rather than the expectations of a neurotypical society.

“‘High functioning’ is not how an autistic person experiences being autistic; it’s how society experiences the autistic person,” says Kat Williams, an autistic mom and autism awareness campaigner.

Parents and special education professionals can use this language to help autistic students get more specific supports for children in need of them while also acknowledging their areas of strength. Autistic teens and adults can use it to clarify how they prefer to relate in a specific environment.

Supportive language moves beyond the current, deficit-focused language and reframes the conversation around specific needs and strengths.

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