The High Cost of “High-Functioning”

I often say, “When you’ve met one person with autism, you’ve met one person with autism.” Like all students, students on the spectrum vary widely in their strengths, challenges, interests, and struggles. 

Our understanding of autism is constantly evolving, which means that the way we think about, talk about, and understand autism are, too.

For example, labels like “high-functioning” and “low-functioning” were once commonplace; however, we’ve come to realize that they are not accurate or helpful in supporting individuals on the autism spectrum.

First introduced by researchers in the 1980s, the terms “high-functioning” and “low-functioning” were used to categorize individuals on the spectrum based on whether or not they had intellectual difficulties as part of their autism diagnosis. “Low-functioning” individuals—those who scored 70 or below on IQ tests—were deemed to be in need of greater support than “high-functioning” individuals, who scored above this number.

The problem is that these labels are outdated, static, and one-dimensional. They fail to capture the depth, complexity, and changing nature of any individual’s unique experience and manifestation of autism, which is highly individualized, variable, and impacted at any given time by multiple factors.

The issues with this kind of binary, static categorization are many. Even if we set aside the use of IQ scores as accurate representations of an individual’s overall intellectual ability, the labels themselves create a false binary that inaccurately depicts the reality of the autistic experience—an experience that not only varies from individual to individual, but also from moment to moment and from skill set to skill set.

The drawbacks of labeling anyone as “low-functioning” are, I think, apparent; however, the challenges of being assigned a “high-functioning” label may, initially, seem less obvious.

The thing is, no matter if you’re a professional athlete, a virtuosic opera singer, or a fifth grader, none of us has the ability to replicate our best performances every time. Whether you’re taking the stage or taking a test, there are a variety of factors in any given moment that impact our ability to perform: how we slept the night before. How anxious or stressed we may feel. What’s happening at home. What happened on the ride over.

For students on the autism spectrum, sensory challenges add yet another layer of difficulty. An itchy, bothersome tag; another student’s incessant sniffling; or the blare of outdoor traffic can all converge to heighten anxiety, distract or disturb, and ultimately push them into dysregulation.

Just as none of us want to feel defined by our worst performances, it is equally destructive to be expected to continually replicate our greatest achievements. None of us has the ability to repeat our best performances day after day, and year after year. Students who have traditionally been labeled “high-functioning” can become trapped by this label; they are laboring under the illusion that they should be able to operate at a “high” level at all times and in all areas, and, due to the belief that a “high-functioning” autistic student’s support needs are less than those of other students, they are often attempting to do this without the level of support they truly need. The results can be catastrophic, as students begin to put enormous pressure on themselves; to internalize perceived “failures”; and to feel they are letting themselves and others down. Ultimately, the toll of these unmet, “invisible” needs can lead to frustration, burnout, depression, anxiety, and irreparably damaged self-esteem. 

For all students on the autism spectrum, then, it is particularly imperative that we consider the myriad factors that can impact student performance, as well as remember that all test scores are, at best, a snapshot of that student’s ability to perform on a specific day, in a specific environment, with a specific set of influencing factors, and that, just as we might perform better on another day, there is also the possibility that we might perform less well, too—and that’s okay!

“High-functioning” as a label is not only inaccurate—it’s misleading. It suggests that not only are a student’s intellectual abilities—as assessed by an imperfect tool of measurement—a fixed point, but also that his, her, or their support needs are, too. The truth is that none of us work this way: not neurotypical students, not students with autism, not anyone.

It also suggests that assessing how well an individual functions is solely a question of intellectual ability, when in reality, even intellectually gifted students might struggle with learning, with self-regulation, with social competency and awareness, with executive functioning, and with sensory challenges.

It’s not just that any and all of these can affect academic performance; it’s that each of these skills is necessary to succeed in life after graduation. We will all spend more of our lives in the “real world” than in the classroom, and as educators, it’s our job to ensure our students are equipped with the tools they need to succeed in each of these areas.

Ultimately, while a diagnosis may provide helpful context, a label—particularly a limiting, inaccurate one—is rarely beneficial. Rather than “good” students and “bad” ones, “high-functioning” students or “low-functioning” ones, neurotypical or neurodivergent, the goal is always to teach the student who showed up today, recognizing that educating the whole person asks us to look at the whole picture.