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.
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.
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.
*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.
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.
Your sensory issues are significantly greater than mine, but your social issues are significantly lesser. I think that while it’s true that autism goes beyond “high” and “low” functioning, “spectrum” is still accurate. A spectrum isn’t just a “left to right” type of line, but more like a square, where something can be to the right and slightly up, just to the left of center, etc. Maybe multiple axes.
I think articles that explain what autism feels like on the inside, are what society needs to be exposed to. Even fictional portrayals of autism in TV and movies show it visually, emphasizing what it looks like to an outsider (the viewer), rather than what it feels like to us.
We need to get our voices out there somehow. And we need to make it known that yes, even if we come across as confident at first glance, we do have issues.
I agree that a “spectrum” doesn’t necessarily have to be linear, and I feel that the autism spectrum is more like an enormous 3D venn diagram, or a spider diagram. The problem is that when most people hear “spectrum” they imagine a linear spectrum, and the word even originated from the inaccurate idea that autism is a linearly progressive condition. Using the term “spectrum” leads to things people asking me things like, “How far along the spectrum are you?” I try to make a point of explaining the non-linear nature of the spectrum every chance I get.
And I definitely agree that autistic-eye-view articles and media are very important! Especially in driving home the message that autism is more than a “social disorder.” So much of traditional autism media is from the perspective of a neurotypical confronted with now “weird” they find some token autistic. Thankfully there’s been a surge in autistic self-advocates producing media from their perspectives, and the NT community is wising up to the fact that there’s more to “Asperger’s” than nerds who like trains.
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What they really need to know as well, is the sheer cost that faking normalcy has on us. I read a very long article about a kid who was sent to ex-gay therapy in the 70s because, at age 4, his parents thought he was gay. He was. He came out as an adult, then later committed suicide in his 30s. His life had been all about faking not being gay, about faking masculinity when he wanted very much to do “girl” things, etc.
Society really seems to hate what isn’t “normal” and tries to force it to fit in, no matter how artificial it is, and no matter how high the personal cost of going through all this faking. They need to realize what this is like for the person involved.
I like Temple Grandins approach in her book “the autistic brain” going beyond definitions and catalogues of symptomes. She addresses different behavior, impairments and assets to different parts of the brain, i.e., different brain structures. These differences are responsible for the autistic spectrum of individuals with different brain functioning. Some parts appear to be more affected when sensory issues come into play, some ones seem less affected with respect to social issues.
I haven’t read that one!! I’ll check it out. I really love her neuroscience presentations, so I’m sure her book must be amazing. She’s gotten to be part of so much cutting edge research, so she has a front-row seat to a lot of really neat stuff. I especially love her diagrams taken from scans done to her brain, since her “type” of autism is so close to my own (basing this assumption on her first-person accounts of her experiences).
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You’ll like it! She wrote about the theory of Walter Schneider http://www.lrdc.pitt.edu/schneiderlab/ who works with these high-resolution brain scans suggesting the lack of speech in the first years after birth could possibly be compensated by growing neurofibers in the visual part of the brain making Grandin to a “visual thinker”. Interestingly, it’s a little bit similar in my case though much less pronounced but I lack speech in the first two years completely and tend to think in pictures, too. Would be awsome for me to have such brain scans, too, just because I’m curious how my brain looks like.
“For all intents and purposes, it seems that…
High functioning means can pass as neurotypical.
Low functioning means cannot pass as neurotypical.”
Oh, I’d go even farther. From what I can tell, a whole lot of supposedly passing for neurotypical really means “doesn’t look like the stereotype of autism I have in my head,” whether or not someone is actually succeeding in passing for normal.
If people don’t think someone looks autistic, they often just come up with alternative explanations for behavior or perceptions they don’t understand.
Well said! I suppose I meant to imply “passing for normal,” but you’re totally right, in that someone who doesn’t look like the caricature of “autism” is often just labeled with other, more negative words. Weird, aloof, crazy, and so on. Even when I try to “pass” I still come off as a little of all of those things!
My child can pass as neurotypical to a stranger in the street and she is low functioning! She also doesn’t physical look autistic! How does a person with autism even look? Do they have a stamp?
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Your article bored the life out of me! they don’t label people as “low” and “high” functioning anymore. When my daughter was diagnosed I was told that if they did label as high and low, that my daughter would not be high functioning as she has delays in more than 3 areas, (unseen delays) an high functioning Autistic doesn’t! There are many people more severe than my daughter who are autistic which is why it’s a spectrum full of individuals! My daughter would be considered “low” but does still look like a “normal” person walking on the streets. It’s how I prepare her which would determine the way she acts. Same with adults, on the inside they could be falling to pieces and once their inside and feel safe they could meltdown. U can’t judge how high and low are different, to me your high functioning and are trying to compete with low functioning Autistics! Why does it matter!
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Kirsten, I’m recently diagnosed (at 24), and I’ve been reading through your writing – some of the most interesting and intelligent I’ve seen on the topic of ASD. Really great stuff. Thank you for sharing. It is thanks to autistic people like yourself who has been willing to share their thoughts on the topic that I’ve been able to make sense of the diagnosis. Thank you! 🙂
Kirsten, I have really enjoyed your thoughts and writing on the subject. I thought I would share my views as how I see the spectrum metaphor as it applies to autism. The metaphor works best with the visible light spectrum, the one you see using a prism or a rainbow. With this spectrum, all of the visible hues of colour, red though orange, yellow, green, blue and violet, evenly distributed to make up white light. This is how the brains of normal or NT people work, they perceive the wold as white light. For an autistic person these colours are never evenly distributed and we don’t perceive the world as white light. We have deficits in hues in one area of the spectrum and more intense hues in other areas. This unique blend of hues defines each autistic person. Function is not where we are on the spectrum but how far this shift in hue takes us away from white light. This perception of function comes from people who see white. People may see someone as high functioning but that person knows that their world is highly tinted to some unique colour. Our struggle is to function within a reality that we see as uniquely tinted.