The Problem With Functioning Labels

Autism is a disorder that most people are vaguely familiar with. Unfortunately, there are a lot of misconceptions about autism—often perpetuated by the media—that people have taken as granted. Among these misconceptions is the idea that people with autism can be broadly classified as “high-functioning” or “low-functioning.” I’m going to explain why terms like these are inaccurate at best and ableist at worst.

What are functioning labels?

What do people mean by “high-functioning” or “low-functioning” autism? Generally, people do understand that autism exists on a spectrum; the term “autism spectrum” and the euphemism “on the spectrum” (referring to someone who is autistic) exist in common parlance. However, most people think of autism as a one-dimensional spectrum ranging from “mild” to “severe.” Autistic people are considered to be low-functioning if they fall on the “severe” end of the scale and high-functioning if they fall on the “mild” end of the scale. This understanding of autism isn’t just a gross oversimplification, but can be actively harmful to autistic people.

What’s Asperger’s?

As a quick aside, most people have heard the term “asperger’s” and understand that it is related to autism. What is it specifically? Generally, people consider asperger’s to be synonymous with “high-functioning” autism. The term used to be an official diagnosis in older versions of the DSM—the official manual used by medical providers in the US to diagnose mental disorders. Basically, it referred to a person who meets all the criteria of autism but doesn’t have significant language or intellectual impairments. Since the release of version 5 of the DSM in 2013, asperger’s and other disorders have been removed the only official autism diagnosis is “autism spectrum disorder” (ASD). Some autistic people who were diagnosed with asperger’s still identify with the label, and they’re valid in doing so. I’ll continue to use the term “autism” to refer to both ASD and older autism diagnoses.

What “it’s a spectrum” really means

C.L. Lynch wrote a fantastic article, “Autism is a Spectrum” Doesn’t Mean What You Think, on what autistic people really mean when they call autism a spectrum. I encourage you to stop and read what she has to say about spectrums before continuing.

To summarize, autism is a disorder that is characterized by difficulties in multiple different areas of life, including pragmatic language, social awareness, breadth of interests, information processing, sensory processing, repetitive behaviors, and neuro-motor differences. When a person checks most or all of these boxes, they are diagnosed with autism. However, not all autistic people are equally impaired in all these areas. Different autistic people have different strengths and weaknesses, which is why it’s best to think of autism as a multi-dimensional spectrum. When trying to classify an autistic person as high-functioning or low-functioning, neurotypical people will typically fixate on the traits that are most obvious to them, regardless of how much they actually affect that person. In addition to being overly simplistic, functioning labels are more a function of how neurotypical-passing an autistic person is than how much they actually struggle integrating into society.

Why functioning labels are harmful

Functioning labels are harmful in a number of ways, both to people labeled as high-functioning and those labeled as low-functioning. For “high-functioning” people, their problems often aren’t taken seriously and they struggle to get the support and accommodation they need because, much of the time, they’re able to pass as neurotypical. Some common autistic traits, such as trouble understanding non-verbal communication and social cues, trouble assimilating new sources of information and adapting to new situations, sensory issues, and having a limited set of interests aren’t as obvious to the casual observer. Someone who struggles in these areas can often pass as “high-functioning” because their challenges aren’t as obvious in day-to-day interactions. Regardless of how disabling their disorder may be, these people are often labeled as attention-seekers and accused of drawing attention and resources away from “lower-functioning” autistic people who are considered to need them more.

Autistic people labeled as low-functioning are harmed by functioning labels as well. These people typically have neuro-motor differences including trouble with coordination and fine motor skills, obvious repetitive behaviors (stims), and are often semi-verbal or non-verbal. The common thread between these differences is that they are much more obvious to the casual observer, causing people to label them as low-functioning. These people are often infantilized and held back because people focus on their weaknesses and ignore their strengths. While these differences can absolutely be disabling, many “low-functioning” people are perfectly capable of living independent, fulfilling lives with the right accommodations. Instead, they’re often treated like a basket case with no hope for a future. Semi-verbal and non-verbal people in particular tend to be treated like infants, when many are perfectly capable of following along with conversations and communicating via alternative methods.

Something worth pointing out is the connection between autism and intellectual disabilities. According to the CDC, approximately one-third of autistic children in the US in 2016 also have an intellectual disability. The correlation between these two disorders has caused people to conflate them, when they’re actually separate disorders that happen to commonly occur together. Remember that one of the primary distinctions between autism and asperger’s in the DSM-4 was the presence of a comorbid intellectual disability. It used to be the case that intellectual impairment was a diagnostic criteria for autism, and people who did not meet that criteria were diagnosed with asperger’s instead. The reason why autism, asperger’s, and other disorders in the DSM-4 were consolidated into autism spectrum disorder in the DSM-5 is that it made sense for medical providers to think of autism and intellectual disabilities as separate; they found that providers were using the existing diagnoses inconsistently and causing confusion.

This confusion surrounding intellectual disabilities and autism persists to this day and is deeply embedded in how people apply functioning labels. Typically, autistic people with an intellectual disability are considered to be low-functioning regardless of how their autism affects them in day-to-day life, and people considered to be low-functioning for other reasons are often assumed to have an intellectual disability. This contributes significantly to the problem of “low-functioning” people being infantilized.

Many non-autistic people consider the changes to autism diagnoses in the DSM-5 to be doing a disservice to autistic people. This is because the DSM-4 encoded the low-functioning/high-functioning dichotomy in the official taxonomy of mental disorders as separate diagnoses. To opponents of the change, this meant lumping autistic people with a wide range of experiences into one category, cutting them off from a more specific diagnosis that more accurately describes their experience. While it is true that autistic people exist on a broad spectrum, the dichotomy enforced by the old diagnoses is not helpful to autistic people, which is why it was removed in the DSM-5. Instead of trying to broadly categorize autistic people in harmful ways, we need to start listening to autistic people and letting their own personal experiences dictate what kind of support and accommodation is best for them.

Why functioning labels can be ableist

In addition to the practical problems functioning labels cause for autistic people, the obsession with classifying autistic people using functioning labels is, in many cases, rooted in ableism. That’s not to say that people who use functioning labels never have good intentions—many parents of autistic children cite the need for more specialized resources for their child as a rationale for functioning labels. It’s also worth noting that the use of these labels is typically borne out of a lack of understanding of autism, and ignorance does not equate to ableism. Still, there is often a hidden layer of implicit ableism lying under the surface of otherwise innocent comments, and it’s worth analyzing how ableist tendencies and attitudes influence this phenomenon.

I’ve already mentioned how the label autistic people are given tends to be a function of how neurotypical-passing they are, and the inherent problem here should be recognizable to anyone with an invisible disability. Many people with disabilities that aren’t obvious to the casual observer—what we commonly refer to as “invisible” disabilities—face discrimination from people who equate not being able to see a disability to it not existing. A great example is people who use wheelchairs. If someone is paralyzed from the waist down or missing a lower limb, most people won’t question them if they say they need to use a wheelchair to get around. However, people who don’t have a visible physical disability or are able to stand or walk on their own are often not believed when they say they need a wheelchair. These people may have chronic pain, weakness, or issues with their nervous system that limit their ability to stand or walk for long durations, but people tend to assume that if they can stand, they must not be disabled. People with invisible disabilities are often denied necessary accommodations on the premise that they’re faking their disability for sympathy or attention.

This kind of discrimination is ableism because the people who perpetuate it think they have the right to decide whether or not a person is disabled and whether or not they need accommodation—without knowing anything about them. Autistic people who are labeled as high-functioning face this same kind of discrimination; they are denied necessary accommodation because someone who knows nothing about them decided that they aren’t disabled enough.

Another aspect of the inherent ableism in functioning labels is the way they stigmatize autistic people. Society tends to find “high-functioning” autistic people more palatable—they’re less different, less other. And people tend to use the high-functioning label as a sort of reassurance: “They have autism, but don’t worry—they’re high-functioning.” It’s implied that it’s a good thing that the person in question is high-functioning, and this in turn implies that there’s something wrong with being low-functioning. Autistic people are labeled as low-functioning because their disability is more obvious to the casual observer, and the term is used to imply that they’re lesser people for it

I think even some autistic people who identify with the term “high-functioning” fall into this trap. While it’s important to support peoples’ right to choose how they want to be labeled—especially when they’re members of a marginalized group—I think there’s often a layer of repressed ableism that causes autistic people to be overly concerned with people knowing that they’re not one of the “low-functioning” ones. There’s often a deep-seated distaste for “low-functioning” autistic people that they’ve internalized after a lifetime of social messaging from an ableist society. Many autistic people, especially those diagnosed later in life, have had to contend with this sort of repressed ableism, myself included.

I see these kinds of subtly ableist attitudes among parents of autistic children as well. When asperger’s was removed from the DSM in 2013, many well-intentioned parents complained that they didn’t want their “high-functioning” children to be labeled as autistic and face the associated stigma. Wanting to minimize the stigma your neurodivergent child is going to face is understandable, but telling people that they should accept your neurodivergent child because they’re less disabled than someone else’s isn’t helpful to autistic people and doesn’t sent the right message to your child.

Not only is the false dichotomy enforced by functioning labels a wholly inaccurate system for explaining the experiences of autistic people—it often has nothing to do with how much an autistic person’s condition affects their life. What functioning labels really tell us is how neurotypical-passing an autistic person is and how well they conform to arbitrary societal standards of normalcy. While people claim their purpose is to ensure the right resources are available to autistic people of different abilities, in practice, they’re used for othering people who don’t fit in and reinforcing the heavy stigma surrounding autism.

What terms should I use instead?

A common question people have when we talk about how functioning labels are harmful is, “What labels should I use instead?” Often these people are missing the point—the problem isn’t with the labels themselves, but with society’s obsession with arbitrarily classifying autistic people and enforcing a false dichotomy.

That being said, there are situations, especially in contexts where you’re trying to provide accommodations to autistic people, where it makes sense to classify them based on how much or what kind of support they need. The DSM-5 has a classification system for this purpose. People diagnosed with ASD are given a “support level.” This is either level 1, meaning they “require support,” level 2, meaning they “require substantial support”, or level 3, meaning they “require very substantial support”. However, these terms are not a drop-in replacement for terms like “high-functioning” and “low-functioning.” If you’re asking the question of what terms you should use to classify autistic people, you ought to ask yourself why you feel the need to classify them at all. Is it really to help them get the accommodation they need? Even in the case of providing accommodations, it’s still typically more useful to ask them or a caretaker what specific challenges they have and what specific accommodations they need.

Conclusion

It’s really time we phase out functioning labels when talking about autism. They represent a gross oversimplification of what autism is, they’re not representative of how much or what kinds of support an autistic person needs, and they reinforce stigmas against “low-functioning” autistic people. Instead of categorizing autistic people based on how neurotypical-passing they are, we need to listen to them and learn what makes them different, what challenges they have, and what they need to be successful.

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