One of Those Autistic People - The Problem with Functioning Labels

“My cousin is on the autism spectrum, but they're not like those autistic people who are always flapping their hands in front of their face," an acquaintance explained by demonstrating, miming the action of flapping her hands in front of her face. I've heard similar explanations about the differences between high functioning and low functioning autism before, and I thought I'd spend some time talking about the use of this kind of language, how it attempts to differentiate between "good autism" and "bad autism," but actually just ends up hurting all autistic people.

What are functioning labels?

A functioning label is usually given to an autistic person by other people, and it is usually used to imply how well they can "function" within a neurotypical world. "High functioning" is often used to refer to people who appear "less autistic" and "low functioning is used to refer to people who appear "more autistic." For many people, "low functioning" is considered synonymous with nonspeaking autism or autism with a comorbid intellectual disability, although many people who use this language hardly differentiate between the two. Sometimes the term "severe autism" is used to refer to this group and the complex combination of conditions that these autistic people face. Despite the way it may seem, this discussion of "functioning" is a lot more complex than it appears, and when used without thinking, it has a lot of harmful implications for the autistic community as a whole.

How do functioning labels hurt autistic people? (yes, all of us)

For those considered "high functioning," we may be told that we aren't "really autistic," that we don't really need accommodations, and our needs might not be taken seriously even when we're at the point of burnout. For those considered "low functioning," we may be told that we're too severely autistic to make our own decisions, to advocate for ourselves, or that we shouldn't be allowed the same opportunities as other people. "Low functioning" is often a placeholder for nonspeaking autism or autism with intellectual disabilities, although this is not always the case, and "high functioning" is often meant to refer to people without these additional disabilities, but these definitions vary so widely between people that it's often difficult to know what is meant when someone indicates someone else's abilities with functioning labels.

However, autism isn’t so easily defined, and it’s common for someone to be “high-functioning” in terms of scholastic achievement but experience debilitating anxiety or to need help remembering to brush their teeth, and for another autistic person to be categorized “low functioning” because they don’t speak verbally, even though they experience fewer mental health issues and have better executive functioning skills than some “higher functioning” autistic people. The vast majority of autistic people have at least one comorbid condition, and their difficulties are much more complex than simply "high" or "low" functioning, but this form of categorization makes it impossible to actually understand or quantify these struggles. I've never heard "mid-functioning" used as a term within these conversations, and I think it's important to look at why that is.

Often, functioning labels are used to exclude autistic people from conversations about autism. People will say that because someone is "high functioning," they couldn't possibly understand the struggles of "low functioning" autistic people, despite the fact that many of those supposedly "high functioning autistic people" experience a lot of those same struggles as "low functioning autistic people." In these instances, I think this is where these labels hurt all autistic people, both high and low functioning.

Not every nonspeaking autistic person has an intellectual disability, and a number of them gain some ability to speak later in life, meaning that in this view, they would have moved from the "low functioning" category to the "high functioning" category, and in the mind of many people who use these labels, their perspectives and opinions on being nonspeaking are no longer legitimate, valid experiences as autistic people. For those nonspeaking autistic people who communicate through AAC or write online, the "severity" of their disability itself is doubted, and they are told that they must not really be nonspeaking, or that they "aren't like my autistic child, who is actually disabled."

By this definition, to have "real" autism means that you cannot express yourself using any form of language, and if you can do these things, your autism is in question. Conversely, if you do meet this threshold, any attempts at self-determination and autonomy are ignored because you're "too disabled" to know what you want or what is good for you.

It's important to keep in mind that communication isn't all verbal, but it's all important. For a nonspeaking autistic person, saying "no" may look like refusing to eat a certain type of food, running away when overwhelmed, or choosing to avoid eye contact despite a therapist's insistence. If there's one thing I'm learning in occupational therapy school, it's that autonomy and self-determination mean a lot, especially to people with disabilities, and if people can't speak verbally to communicate what they want, then we need to get better at learning to listen to their needs in the ways that they are able to express them.

For those considered "high functioning," family members of those within the autistic community may believe that we don't struggle at all, and our thoughts and opinions can't be used to help other autistic people, speaking or nonspeaking. Places like the Judge Rotenberg Center justify the use of electroshock therapy on "low functioning" autistic people despite the pleas and protests of who they call "high functioning" autistic people. This and other harmful therapies are used most often on "low functioning" people, despite most research on this subject only being done on autistic people without intellectual disabilities who have the ability to speak.

This insistence on a chasm of difference is used to justify anything and everything in the name of saving "low functioning" autistic people from their autism, and refusing to listen to the voices of "high functioning" autistic people has the effect of hurting "low functioning" autistic people worst of all. They are the ones who are most often segregated from classmates in special education classrooms; they are the ones who get stuck in warehouses working for less than minimum wage, and they are the ones with therapy schedules that require five-year-olds to be in therapy nearly as much as a full-time job. When autistic people's voices are ignored, the most vulnerable of us pay the price.

What happens when we listen to autistic people about autism?

The Neurodiversity Movement is one good example where both "high functioning" and "low functioning" groups have worked together to improve social views of autism and resources for autistic people. The Autistic Self-Advocacy Network's motto, "Nothing about us without us" has driven them to create resources on autism and autism acceptance, including safety toolkits for autistic people, training programs, good media representation, and a variety of other things that benefit all autistic people, not just those of us who are able to speak. And within this organization, there are leaders who are speaking and considered "high functioning," and there are leaders who are nonspeaking and considered "low functioning."

Another resource, Thinking Person's Guide to Autism, breaks down this false dichotomy, challenging the belief that people within this community can be so easily separated into "high-functioning" or "barely disabled" and "low functioning" or "actually disabled."

"Understand that we who support neurodiversity aren’t confused about the fact of your child or loved one being really, truly disabled. We know there are non-speaking autistic people, epileptic autistic people, self-injuring autistic people. We know this because many of us are non-speaking, epileptic, and self-injuring autistic people" (Ballou, 2018).

Basically, we need to understand that the experiences and struggles of all autistic people are complex and valid, and creating a hierarchy of legitimacy can hurt everyone involved.

Why do people use these labels?

As human beings, our desire to categorize things and people can be very strong. However, we don't always have the time or patience for 200 different categories, so we tend to simplify complex ideas into the false dichotomy of good or bad; right or wrong; high functioning or low functioning. We like to see things in black and white, even though few things in life are that simple, and if we can prove our case by exaggerating our claims, that's even better.

What do I mean by this? I'll give an example: "Sarah is Jessie's mom and Jessie was recently diagnosed with autism. Jessie has a strong interest in bicycles and for her 8th birthday, the whole family went to a Bicycle history museum, including Jessie's grandparents. Her grandparents were alive during a time where autism was believed to be caused by bad parenting, and even though they have been told differently now, they still hold some doubts. For this reason, when Sarah and Jessie spend time with Jessie's grandparents, Sarah is quick to point out how smart Jessie is, how communicative she is, and how different she is from other autistic kids they see in the museum who wear headphones and spend time in the sensory room. "Jessie doesn't need those things because she has high functioning autism," she explains. Downplaying Jessie's autism in her mind makes her look like a better parent, and it helps them see Jessie as the smart, capable person Sarah knows Jessie to be."

In this example, Jessie's mom is afraid of negative judgment about her parenting due to Jessie's autism, so she attempts to downplay the effect of autism on Jessie's life. However, in doing so, she remarks negatively about other autistic kids who do "need those things." Could Jesse benefit from headphones or spending time in the sensory room? Probably, but we'll never know because for Jesse's mom, it never occurred to her that Jesse could actually be like those other kids and still be the smart, capable kid she knows her to be.

It's important to note that in this example, Sarah isn't an intentionally terrible, conniving human being set on putting down autistic people. Often, when a family member or a friend uses the term "high functioning" to refer to their kid or family member, their intention is to show that that person is valuable, as is their input, and that they have faced a lot of struggles and are capable in their accomplishments. However, like Sarah in this story, they are fearful and are trapped in the false assumption that their child must be seen as different from other autistic people in order to be seen for who they are.

This tendency can be seen through examples from other marginalized groups in society, and a pretty good example of this can be found in "Beauty and the Beast," particularly with the example of Belle. In the movie, we see that Belle isn't like the other girls in her village; she reads, she is independent, she has unique thoughts and ideas, and she looked past the social expectations of her time and overcame jerks like Gaston to be a hero in her own story, or at least that's how I saw it when I was little.

When I was in college, I took a class called "Disney: Gender, Race, Empire" that looked critically at a lot of different Disney movies in terms of diversity, equity, and inclusion, and I learned that Belle from "Beauty and the Beast" was apparently the perfect example of the trope, "Not like other girls," where the main female protagonist is shown as independent, smart, and competent, but at the price of making "the other girls" look bad, and all other girls with them.

This kind of trope implies that all girls are unthinking, incompetent, and, as my brother would call them, "sheeple," or people who follow the crowd like sheep, and that the main female protagonist is better than the other characters by not being like all the other girls. This trope makes Belle look better at the price of putting down the whole category of "other girls," and I see the same tendency with the use of functioning labels in autism.

This tendency assumes that the only way to make people accept an autistic person is to have them look down on every other autistic person for supposedly being less capable, less smart, less "functioning," and this belief hurts every autistic person.

Asperger's Syndrome itself was created as a diagnosis during the reign of eugenics by Hans Asperger who worked with the Nazis at the time (Rosa, 2018). His involvement in the actual Nazi movement itself is a matter of discussion between different groups, but when it comes down to it, his job was to identify the "useful autistic people" and the "useless autistic people," differentiating between them for the "good" of society.

Even today, we can use terms like this to build ourselves up at the expense of other autistic people, which is why I personally choose not to use the term "Asperger's Syndrome" to describe myself. I don't feel a need to defend myself, to make sure people know that I'm not "like those autistic people." Instead, I can be the entirety of who I am, showing that some autistic people are like me and some are not, but they can still be valued by others. If other people can't accept that, then it's their issue, not mine.

To my acquaintance who claimed that their extended family member wasn't like "other autistic people" because they didn't show self-stimulatory behaviors in public (aka stimming), I would ask you to reconsider this assumption about "high functioning" autistic people. In our society, we are trained to see neurotypical behaviors as good and autistic behaviors as "bad." Some of us may have even been in therapy to train those behaviors out of us, and now many of us experience anxiety, depression, and PTSD because people thought we wouldn't be seen as capable if we "flapped our hands in front of our faces like this."

Others of us may have experienced bullying, and we hid that part of ourselves through masking in order to appear more socially acceptable to others, which caused mental health issues and burnout. I personally didn't visibly stim as much before my autism diagnosis, partly because I didn't know it would help my anxiety and partly because I'd learned that bouncing my leg under my desk was annoying, that tapping my pencil was distracting to others, and that fidget toys were for little kids. It's taken time to allow myself to self-regulate in ways that help me as an autistic person, but I still hesitate to do so in front of others, especially in more professional settings. Frankly, it's nobody else's business whether I choose to do these things in front of others or in the comfort of my own home, but deciding that a person is not smart, capable, or competent because of these things is a distinct misuse of functioning labels, and part of why I choose not to use them to describe myself or other autistic people.

If you choose to use functioning labels to describe autistic people, I encourage you to consider the reason for this, what it would mean to let go of those labels and see every autistic person as the complete human being that they are, rather than holding onto this dichotomy of "high functioning" and "low functioning" within a group where we all need some degree of understanding in everyday life.

What do we use instead of functioning labels?

In most cases, it's best to be specific about a person's abilities and their needs. If you use the word "low functioning" to describe an autistic person with an intellectual disability who uses AAC to communicate, say that instead. If you use the word "high functioning" to describe someone who does well in math class but has a tutor for English and wears headphones during recess, say that.

In the medical setting, describing specific support needs is often more effective and respectful as well. For example, if someone requires multiple verbal cues for remembering the steps for dressing, say that they require high levels of support for dressing. This factual explanation of support needs for autistic people is more helpful for other practitioners who need to know this person's abilities, and it is much kinder to autistic people and their families.

Of course, don't just take my word for it. Research the opinions of other autistic people, look at your own assumptions when talking in this way. At the bottom of this post, I shared a few resources on the stuff I talked about in this post, and I encourage you to look further.

If you're reading this blog post and you use this language, this isn't me telling you that you're a terrible person who hates autistic people, but I am saying that autism is a complex condition, that autistic people are a diverse group with complex needs, and that our understanding of them should allow for this complexity. Reshaping and questioning these assumptions is sometimes necessary because it helps us understand the existence of both ability and disability within all autistic people, even if these things may vary between individuals.

I'm going to end with two descriptions of autistic people, and you can try to figure out what category they should fall into:

One woman lives and drives independently, she is enrolled in a grad school program at an out-of-state university. She was on the honor roll in high school, and had a 3.7 GPA in college. She experiences anxiety, but is able to do well in school and has friends in her social groups. She likes to cook, she played softball and participated in drama during high school, and she received a scholarship for an essay she wrote about her autism, along with other merit-based scholarships for enrolling in college.

The other woman struggles with sensory issues. She has trouble doing the dishes, and only does them while wearing gloves and headphones. She has not cleaned her house all week. She sometimes struggles to remember to brush her hair or eat at the appropriate times. She has an emotional support animal. She is not currently employed. She has been enrolled in food assistance programs in the past. She has trouble managing her time, and sometimes she will spend hours playing videogames or mentally recovering from social activities instead of doing homework or keeping her house clean. She wears earplugs during louder social gatherings, and she can be overwhelmed by unexpected changes to her environment. During high stress conversations, she prefers to communicate through writing or texting. She uses transcription services in-class and requires subtitles for audio/visual material at school. She has a notetaker and she takes exams in a limited distraction environment. She has lower back pain that discourages her from exercising as much as she should. She experiences anxiety that causes her physical symptoms like headaches and stomach aches, and she has experienced depression which she described as "feeling like my brain is attacking me." She is in counseling therapy, she didn't get her driver's license until she was 18, and she didn't move out of her parent's house until she was 22.

Fun fact: Both of these women are me.

The first description is what most people see on the outside, facts about me and the external view of my experiences and successes as an autistic person. If you only see this side, it looks like I barely struggle at all. After all, I do well in school, I engage with others socially, and I've even managed to make some friends. The second description, on the other hand, shows someone who struggles and has to modify daily tasks like cleaning, attending class, and engaging socially. She has multiple disabilities that affect the way she lives her life, and these disabilities affected the pace at which she accomplished multiple milestones in her life.

To be clear, this isn't me trying to say that you should see me as "low functioning" or that you should equate my struggles with those of a nonspeaking autistic person with epilepsy, depression, and learning disabilities, but that you should understand that my experiences as an autistic person are much more complicated than simply "high functioning" or "low functioning," and the same goes for every other autistic person.

Both of these realities can coexist. I am disabled, and my disability affects the way that I live my life, but I can also do well in school, live on my own, and have accomplishments that I am proud of. Some people can't do these things, but they should still be seen and respected as human beings. By seeing both of these realities, others can better understand me and the complex way that I exist in the world, and by allowing for the coexistence of success and struggle in other autistic people, we can better appreciate their complexity as human beings.