What’s Your Function?

The difference between high functioning autism and low functioning is that high functioning means your deficits are ignored, and low functioning means your assets are ignored.
     Laura Tisoncik

If you’re at all familiar with the autism community, you’ve probably heard autistics referred to as either “high functioning“ or “low functioning.” In fact, it seems impossible for the media to discuss an autistic person without using these terms. But what do these words actually mean? Where do they come from? And who gets to decide whether an individual is high or low?

Personally, I don’t think these terms are fair.

I don’t even think they’re useful.

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The division of the autism spectrum into “high” and “low” functionality in part comes from the inaccurate term “spectrum” itself. Because of the wide variance of presentation seen in autism, a concept arose early on in the scientific community that ASD is a linear spectrum, with the “high functioning,” less-severely affected individuals on one end, and the “low functioning,” more severely affected on the other.

However, while the term spectrum helps us deliver the message that not all autistics are identical, it gives an unrealistic image of autism.

I’m not advocating for the removal of the term spectrum, seeing as how it’s sometimes useful for describing ASD to the, shall we say, uninitiated. But it’s important to realize that autism is not a linear condition. “Autism” refers to a vast number of traits that are not all connected in a progressive way.

For example, I am someone who is usually labeled as “high functioning,” and on the less severely affected “end” of the spectrum.

This is because, when I have the energy and am allowed the mental preparation, I can pass for non-autistic. I can make facial expressions, vary my vocal intonation, and monitor my body language. To some degree. This is also because I am usually very verbal, and capable of expressing my thoughts (and sometimes even my feelings) using spoken language.

But I also have intense sensory processing problems, which can’t be seen from the outside. Not as intense as some, I know. I can (sometimes) grocery shop without having a meltdown, I can (sometimes) watch a firework show without crying, and I can (sometimes) enjoy a loud party for at least a little while.

But a passing ambulance or police siren can cause me such intense pain that I have to grit my teeth and focus all my effort on not hiding my head in my hands in public, and sometimes I have to do it anyway. (And can I just say that I had no idea the sirens in NYC were so much louder than normal sirens until I moved here? Now I have to stop walking, stop thinking, and fight back tears!)

I cannot wear clothing with tags, or made of scratchy fabrics without melting down or ripping them apart. And there are many ordinary, everyday articles of clothing that I simply cannot wear at all.

I cannot look down in a moving car for more than a couple seconds without becoming overwhelmingly nauseous, and if you turn up the volume on your car stereo too quickly, I will scream.

I definitely cannot take the (bright, rattling, noisy) bus home after a busy day at Ikea without shutting down, going nonverbal, and crying. (A story to which my poor boyfriend can attest! The first time it happened he thought he must have said something to upset me, and I couldn’t speak to tell him what was really wrong until we had gotten off the bus.)

I know autistics who are considered by others to be far more “low functioning” than myself—who can’t change their faces or voices, who can’t read facial expressions, who can’t say more than two words about anything not related to their special interests, or anything at all—yet who have none of my sensory problems. While a wool sweater might bother them, they can easily put the sensation out of mind and acclimate. They admit to barely noticing the overhead lighting that’s giving me nauseating vertigo. While they’re not all that interested in large social events, they’re not all that bothered by the noise, lights, and smells of a large party. They turn their stereos up to max without a moment’s hesitation, and simply don’t understand how a siren could be painful. Maybe they prefer not to mix different food textures in the same bite, or they’re more ticklish than usual, but they don’t have severe sensory issues that affect their daily lives.

While I struggle to visit a grocery store, or to even get from point A to point B on any given day, none of this is as outwardly obvious to non-autistics, who hold the utmost priority of social skills to be self-evident.

What makes those less socially-able autistics more “severely affected” than I am? Why are people like that labeled “low functioning” while I’m given access to the “Asperger’s/high functioning autism” club?

I believe there is a distinct flavor of ableism at play that targets autistics differently depending on the category in which neurotypicals place them.

Those diagnosed as classically autistic or with “low functioning” autism are treated very differently than those diagnosed with Asperger’s* or “high functioning” autism.

This is a problem that hurts all autistics, “high” or “low,” because it is a reflection of how we are seen and treated by society.

What does it mean to “function”?

Based on my own experiences, I believe that these labels really hinge on which types of “functionality” neurotypicals value. Namely, social presentation.

For all intents and purposes, it seems that…

• High functioning means can pass as neurotypical.
• Low functioning means cannot pass as neurotypical.

Many “low functioning” autistics function perfectly well in their everyday lives. They may have disabilities, even severe disabilities that make activities of daily life a challenge, but they would never self-identify as low functioning. Some “severely affected” autistics are computer programmers who produce high quality work, despite having to work from home. Some are successful mechanics, cooks, engineers, animal trainers, researchers, authors, or accountants. Some find it impossible to support themselves alone, and supplement their incomes with government assistance, and also happen to produce beautiful artwork every day, write books that benefit thousands of readers, or volunteer to play piano at their local nursing home. No matter how hard these autistics try, they cannot hide their autism, but that does not mean they do not function.

“Low functioning” autistics are devalued as people simply because they can’t function in the ways that matter most to those giving the labels.

And yes, the functioning labels are, in theory, supposed to indicate a level of disability, but that is almost irrelevant when it comes to how neurotypicals treat the people to whom they apply these labels. Besides, the arbitrary criteria that separate the “high” from the “low” often have little to do with how disabled an individual is in daily life.

It’s all about passing.

But sometimes a person with “severe” autism can graduate to “high functioning” when they have become so undeniably successful that the inaccuracy of the label is embarrassingly apparent. (It bears mentioning that this graduation only happens when the autistic in-question is verbal “enough.”)

My favorite example of this phenomenon is Temple Grandin. I find it interesting that she is described in the media with labels like “Asperger’s.” I feel this undermines what might be the most inspirational part of her story.

Temple Grandin was diagnosed as “brain damaged” and completely disabled at the age of two—“low functioning,” if you will. She has spoken about how her mother was told that Temple was a lost cause, and was advised to put her daughter in a home (thankfully she did nothing of the sort.) Even today, as an adult who speaks about emerging from disability, Temple Grandin is the kind of autistic who can’t pass for neurotypical. Her voice is monotone, she dresses in a way that can only be described as unconventional, her face is blank, and she doesn’t use standard body language. And yet I would argue that she “functions” better than many neurotypicals. She’s incredibly successful in her chosen fields, great at what she does, and admired by everyone who meets her. But to say that she has graduated from autism to Asperger’s simply because she is accomplished and successful does a disservice to those slapped with dismissive labels like “low functioning autism.”

And yes, there are millions of autistics out there who do struggle to function in their everyday lives—those without spoken language often struggle to express their needs, for example. Many of these people self-identify as disabled, and do not shun such labels. But, honestly, in my personal experience, I have never met a nonverbal, disabled autistic who felt comfortable with the term “low functioning.” I cannot speak for this side of the autistic community, as I am privileged to be seen and treated as “high functioning,” but again, in my anecdotal experience, every person I have encountered who has been given this label has rejected it.

And, as frustrating and embarrassing as it often is to admit it, I too am actually quite disabled in many aspects of my day-to-day life. At this point, I am still incapable of caring for and supporting myself alone and without help. I am incapable of performing many elements of daily life considered to be the bare minimum in ordinary society.

Does this make me “low functioning”?

Anyone who has met me in person—especially in a context where I am performing, such as a conference or a party—would be surprised and confused to hear that.

I am very skilled at creating temporary shells for social situations, and I have “above-average” intelligence and command of language. Because of this, I have the privilege of being treated like a human being by strangers, potential employers, doctors, and so on. But, also because of this, it is very difficult for me to secure the accommodations and treatments I need, and I am often held to a standard that I simply cannot maintain.

Every autistic is different, and autism undeniably comes with disabilities as well as strengths, but to write-off visibly disabled autistics with hopelessly dehumanizing terms like “low functioning” while privileging those with invisible disabilities is unfair and unjust.

Not every autistic can become the next Temple Grandin, but assuming the worst only creates a self-fulfilling prophecy. Even a disabled autistic can live a happy, fulfilling life. And even a “high functioning” autistic can be disabled. Maintaining only a narrow definition of what it means to “function” serves only to ignore and silence valid disability, and dismiss and marginalize real potential.

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*Footnote: For all the backlash against the removal of “Asperger’s” from the DSM, I personally am happy and relieved that this is finally happening. “Asperger’s” is just another word for “high functioning,” and the divide between autism and Asperger’s has always been completely arbitrary. The traditional view used to be that “autism” came with hypolexia (speech delays), while “Asperger’s” came with hyperlexia (advanced language). But many “classic autistics” were hyperlexic children, and many diagnosed with Asperger’s were hypolexic. The new DSM unites all these various terms under the same diagnostic umbrella of Autism Spectrum Disorder (ASD). The criteria are also now applicable to adults who have learned to compensate for their childhood symptoms. I believe that in the future, as research progresses, the ASD umbrella will be split again into more specific sub-types of autism—conditions that share similar outward presentation but have different root-causes and benefit from different therapies and treatments—but for now, I feel that breaking down linguistic barriers is what is needed most.

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Other examples of accomplished, so-called “low functioning” autistics include:

• Drew Goldsmith – a teen boy who advocates against the “low-/high-functioning” dichotomy, and who, at 12 years old, made a wonderful documentary about the pity-based view of autism in America, No Pity. Though Drew cannot speak, he has been making films since the age of 10, and has participated in more than 20 international film festivals.
• Amy Sequenzia – a nonverbal woman who identifies as disabled and in need of round-the-clock assistance. Amy also happens to be an accomplished writer and advocate who speaks out against the marginalization of autistics. From her website: “Once said to be less than human, I found my voice and I now make sure I am heard.”
• Carly Fleischmann – A teen girl diagnosed at the age of two with severe autism, oral-motor apraxia, and cognitive delay. When Carly was 10 she began typing to communicate, and today she is an accomplished autism advocate, and has published her own memoir.
• Jeremy Sicile-Kira – A young man who was “probably the first autistic person who uses assistive technology to communicate to have his own column in his high school newspaper, and to be a staff writer on his college newspaper” (from his website). He uses paint to express his visual processing experiences. Jeremy has also co-authored a book with his mother titled, A Full Life With Autism: From Learning to Relationships to Achieving Independence.
• Wendy Lawson – An autistic psychologist, counselor, and social worker with her own private practice, Wendy was originally diagnosed as intellectually disabled, then schizophrenic, then finally received her correct diagnosis of autism as an adult. Wendy has a testable IQ of 83, but is undeniably intelligent and successful, having published six books, and even more papers and articles.