Why Do You Need a Label, Anyway?

A few months before I was officially diagnosed as autistic, I was laying on my living room floor, attempting to meditate for the first time in my life. I had no idea what to expect, and I think that is what enabled me to have the experience that I ended up having.

I was 34 years old and I was at the end of my rope. I was acutely aware of the fact that I wasn’t functioning as a 34 year old adult was expected to function, despite trying my hardest. I had no idea what was going on and hoped that a trained mental health professional would be able to give me some insight.

So there I was, dutifully doing my “therapy homework” and trying to meditate as suggested by my therapist. I was laying on a purple yoga mat on the floor, focusing on my breathing and visualizing that with every exhale, the cloud of my thoughts was blown further and further away from me.

All of the sudden, I perceived the distinct difference between myself and my mind. For the first time in my life, I wasn’t in my mind, I was observing my mind.

I felt such a huge release, such an expansive freedom, and it is such a shame that language is ill-equipped to express the absolute serenity of realizing who I was at my core, because it was such a beautiful feeling. I was not my mind, I was the awareness observing my mind.

After this profound experience, I thought, “I’m cured!” I thought that getting my true identity right would absolve me of the mental and emotional challenges I had been beset by my entire life. I even quit therapy and just dedicated myself to regular meditation.

Yet, I found that I could only maintain that state of perfect serenity if I stayed in perfect mindfulness, usually requiring the avoidance of stressful experiences (AKA life.) I was basically in full bypass mode while calling it enlightenment.

After a while, I couldn’t keep myself in a constant state of meditation, because, after all, there were children to feed, chores to do, and all the necessary rituals of a mundane, physical existence. There’s a reason why monks and ascetics remove themselves to monasteries and mountain-tops; it is profoundly difficult to remain in presence while also remaining present to the daily realities of life.

It makes me think of a famous Zen story that goes like this:

“A monk told Joshu: ‘I have just entered the monastery. Please teach me.’

Joshu asked: ‘Have you eaten your rice porridge?’

The monk replied: ‘I have eaten.’

Joshu said: ‘Then you had better wash your bowl.’

At that moment the monk was enlightened.”

When I first had that experience in meditation, I was the monk entering the monastery, expecting purely spiritual teachings to achieve healing and enlightenment. It wasn’t until I realized that it is not through bypassing the “mundane” physical duties and rituals but through mindfully embracing them and practicing them that I began to even set foot on the path towards enlightenment and to becoming an integrated being.

In other words, having that experience in meditation, realizing that I am not my mind but that I instead have a mind, and that what I really am can only be described as “awareness,” didn’t change the fact that in the physical world, I still operate a 5’3” body that has brown hair, is chronically ill, and has an autistic brain and neurology.

Once I came back down to earth and was confronted by the realities of my mind and body, I realized that I had to get to work actually changing and/or accepting the challenges that came along with my particular mind and body.

So, I started therapy again. And I started improving in all areas – except a consistent group of challenges which just would not budge. These ended up being, upon inspection, autistic traits. I was referred to a neuropsych for assessment, diagnosed as autistic, and the rest is history!

I share this story to illustrate that I am very aware that I am not my mind and I am not my body (and therefore, that I am more than my autistic neurology) That I am something beyond these purely physical manifestations of cells and electrical impulses racing around in the 3 pound hunk of fatty tissue otherwise known as the brain. I share this story, also, to demonstrate that true healing and empowerment is possible only through nonjudmental observation and acceptance of what exists, rather than through denial or resistance to what exists, and not just on a personal level, but on the scale of the whole of humanity, as I will explain.

Even knowing that I am not my mind and I am not my body, I still choose to refer to myself by the label of “autistic person.”

Of course saying that I am autistic and have an autistic brain and neurology does not perfectly encapsulate all that I am as a person. Of course it fails to express the fullness and the magnitude and the scope of all that I am. Nevertheless, this is the brain and body I was born with and it impacts literally every single aspect of my functioning and experience here on this Earth. It may not be all that I am, but it explains how one facet of my existence impacts literally every other facet and how I interface with the world every moment, so, it bears mentioning! And as it’s a bit unwieldy to say, “I am operating a body which has an autistic brain and neurology,” and as this neurology is intimately tied up with the organ which lets a person experience an individuated identity in the first place (the brain), I simplify it and say, “I am autistic.”

On the one hand, I agree with people who dislike labels because they feel they are limiting. No word, or collection of words, ever could perfectly encapsulate the ultimately unknowable depth and magnitude that a person is.

On the other hand, reality is never actually being limited by words. Words do not have that power. Only perception can be limited by words, never reality, but this is an inevitability when dealing with a symbolic system such as language.

We’re not telepathic (most of us aren’t, anyway.) We rely on language, imperfect as it is, to communicate the ineffable aspects of our experiences as best we can. And since all words are a merely sign-posts pointing in the direction of the objects and concepts that they represent, and are not the actual objects and concepts, themselves, one could argue that all language is, essentially, a collection of labels, and that all language is limiting.

But that doesn’t mean that we should be such pedantic purists that we shun all language. That just means that language has its limitations and we need to keep those limitations in mind when we are using it to express the realities of our subjective, lived experiences and abstract thoughts.

If you’re aware that language has its limitations, and that no word will ever perfectly duplicate reality or any portion of it, then you’re never asking more of language than it can give you.

In other words, there is simply no substitute for subjectively experiencing something. Expecting language to be a perfect substitute for subjectively experiencing something and expecting language to impart the full depth and breadth of a concept or thing is just quixotic (there’s a word for ya! It means impractical.)

I mean, if you want to get technical, any statement following the words, “I am,” is fundamentally incorrect, and that’s true whether or not you believe that the source of our awareness is physical or spiritual in nature, because personalities are not objective realities, they are constructs and amalgamations of ideas.

The only thing we can say with certainty about ourselves is that we are aware of being aware. Everything beyond that is just a fairy tale woven around the core of our being – our awareness.

So if you really want to split hairs, yes, every statement following “I am” is creating a limited perception of the actual person being described by those statements, as it fails to encapsulate the ultimately unknowable magnitude or depth of a person or the infinite potentialities that a person may become.

But again, these statements are not creating actual limitations of that person, only the perception of that person, and, to a certain extent, that is simply unavoidable until we find a better way of accurately communicating our lived experiences and perceptions other than the ultimately limited medium of symbolic language.

Yet, people walk around all the time saying things like, “I am a man,” and “I am American” and “I am an extrovert” without batting an eye.

Why is it, then, that people only seem to object when someone says something like, “I am autistic”?

Their objections sound like:

“Don’t forget you’re a PERSON first!”

“Don’t let autism define you!”

“Why do you even need a label, anyway?”

We don’t refer to a black person as “person with blackness,” yet many people insist on referring to autistic people, whose neurology is just as genetically inherent as someone’s race, as “person with autism.”

We don’t refer to a black person as “person with blackness” because it’s highly offensive. Yet when autistic people are referred to, against our will, as “person with autism” we are supposed to believe this is done to show respect for us? That it is done to be merciful, to separate our humanity from a terrible condition we are maligned with? The only thing autistic people are maligned with is the bias against our neurology demonstrated by the overwhelmingly neurotypical society we find ourselves in.

Can you imagine if we said the same things that are said to autistic people to black people when they self-identify as black people?

“Don’t forget that you’re a PERSON first!”

“Don’t let your blackness define you!”

“Why do you need a label, anyway?”

All of the above implies that the person saying these statements considers being black as:

a) something separate from the person

b) something derogatory

c) paradoxically, non-existent (as in, the people who say, “I don’t see race!” and that there is therefore no functional need for a label if race is non-existent and we’re all the same)

Statements like these are said by people who live with privilege they are not even aware that they have. They have the privilege of living in a society where their skin color and where their neurology is the most dominant. The society has been built by and for people just like them.

Having to acknowledge differences also means having to confront the vast inequities minorities experience, which is so uncomfortable that most in the majority would rather bypass this altogether, the same way I tried to bypass doing the work of confronting my own inner demons in therapy by trying to live life as a purely spiritual being while ignoring the realities of physical existence (before finally accepting that the way to becoming better integrated was to balance and embrace all of my component parts.)

I’d be willing to bet that the type of people likely to say, “I don’t see race” are the type of people who are likely to say, “don’t let your autism define you!” It stems from the same denial, the same refusal to acknowledge that differences do exist. Rather than confront the need to create more equitable social structures and accommodations, these people prefer to deny that differences exist, because if they pretend everyone is really the same as them, they don’t have to change.

Statements like these, of course, are not helpful, despite their apparently benign intent, and are not how an equitable world is built. The first step towards a better integrated society is, perhaps counter-intuitively, acknowledging existing differences, so that accommodations can be devised to ensure that everyone can function at their best in the society, so that systemic oppression can be challenged and shaken and replaced with systems which are fair and truly inclusive.

If you’ve never experienced what it is like to exist in a society which operates in ways that create unseen barriers for you, and what it is like to have your challenges misunderstood as moral failings rather than as neurological differences and challenges (or lived under systemic oppression, while your struggles are blamed on character flaws supposedly “common” for members of your race, for instance), and for the society to so thoroughly misunderstand the source of your struggles to the point of believing you need “tough love” rather than accommodations, I could understand how the need for labels would be lost on you.

Under those circumstances, I could understand how you could mistakenly think that others only struggle because they’re focused on their struggles and not focused enough on solutions, solutions that work for you, and solutions that you mistakenly think will work for everyone (like, “just focus more!” or “just try harder!” or “don’t focus on the negatives, focus on the positives!”)

I also suspect that people’s objections to identity-first language (example of identity-first language, which is overwhelmingly preferred by the majority of autistic people: autistic person) have little to do with people being concerned that someone is conflating a physical or mental attribute, such as autistic neurology, with their total overall identity, or failing to provide another person (or themselves) with an adequate understanding of their full scope and magnitude as a human being by focusing on only one aspect.

I suspect it has more to do with a fundamental human failing which, stated as simply as I can, might be best described as the fear of difference, when that difference is perceived as being negative.

Differences and even human struggles are not something to be glossed over, hidden or suppressed, unless you believe there is something shameful about them. We don’t tend to hide the things we aren’t ashamed of, do we? We come right out and proclaim the things we’re proud of.

Like, “I am a man!” And “I am an American!”

I have had more people than I care to count say things to me along the lines of, “why do you need a label, anyway? Just live your life!” As if the only thing keeping me from “just living my life” were the silly little labels that made me think I couldn’t.

But no one is telling the proud American man to forgo his labels and just live his life, are they? Why not? Because one label is thought of as positive, and one is thought of as negative, revealing a hidden (and possibly even unconscious) bias.

But, let’s just do a quick thought experiment. Let’s envision what it would be like for me to just go live my life.

What’s this? The same sensory and processing differences and struggles are still occurring, with or without a label!? What’s this? When I don’t operate with an autistic label, people interpret my sensory and processing differences and struggles as moral failings and character flaws, and give me the inaccurate, derogatory and harmful labels of dramatic, stubborn, selfish, lazy, etc.?

The “life” these people insist we should just get on with living is their neurotypical life, it is the life they think we could have if we would just stop talking ourselves into struggling by adopting “limiting” labels, as if the labels themselves are causing us to struggle and we could be cured if only we would stop using them. They cannot conceive of living life with a neurology which is at odds with the majority of people in the society because they’ve never had to.

Autism still exists even if it is not discussed or described by language. You do not cure someone of being autistic by removing labels from their experience. Other labels come in to fill the vacuum, labels we didn’t choose for ourselves, labels which are based on fundamental misunderstandings, labels that deny us help, accommodations, and acceptance, labels that cause actual harm to us in the form of prejudice, violence and higher instances of suicide.

I find that people who are uncomfortable with autistic people using identity-first language (“autistic person”) rather than person-first language (“person with autism”) are uncomfortable because identity-first language insinuates that autism is central to a person’s experience and that it will continue to exist, which is rather off-putting when you’re someone who has a deep-seated fear of difference and a need to believe that we’re all the same so that they don’t have to confront changing.

Identity-first language flies in the teeth of the illusion created by person-first language, the illusion that autism is something separate from the person that can be eradicated. Person-first language is borne of a fundamental unwillingness to accept that autistic neurology exists. It is the wishful thinking that autism can be eliminated if one only just eliminates the language used to describe it.

If we were plotting this behavior on the five stages of grief, people who insist on person-first language for describing autistic people are in denial, the same denial demonstrated by people who refuse to acknowledge race or other differences and think that this is inclusivity when really it is a desperate attempt to avoid having to confront the inequities those with differences face every day, which perpetuates those inequities.

And so, as autistic people, we choose to ally ourselves with labels which are more accurate and which more closely represent for others our actual lived experiences, which open the door for understanding, accommodation, and finding solace in community.

An unexpected (and most likely unintentionally allegorical) but highly illustrative example of this point comes from the movie Elf starring Will Farrell.

If you’re not familiar with the film, Buddy is adopted as a baby by an elf in the North Pole after accidentally crawling into Santa’s sack of toys at the orphanage. He is raised as an elf and grows up believing he is one, but as he ages, his differences become more and more apparent.

When he is judging himself by elf standards, he is deficient. He is hard on himself for only completing something like 85 Etch-a-Sketch toys when his quota was hundreds, and when the other elves on the production line were easily able to meet this quota. He thinks he’s just a Cotton-Headed Ninnymuggins.

It’s not until he overhears some elves talking and learns that he is human that it all really clicks. Eventually, he decides to travel to New York City to meet his biological human father.

Was Buddy any less of a human, or any more of an elf, when he was denied the label of what he truly was physically; a human?

No, he was always a human. He was never an elf. And what’s more, after discovering he was human and not an elf, he didn’t stay in the North Pole. He went out to seek community, and he was able to find them, because those who self-identified as humans had congregated in their own societies.

Labels might be limiting in the sense that it is impossible to distill our total essence into a few descriptive words, but they can also be liberating in the sense that when you go your whole life thinking you’re a failed neurotypical person (which is, don’t forget, just another label) rather than the more than adequate neurodivergent person that you are, there is such freedom to be found in no longer being held to standards that never truly applied to you and that you never would have been able to accomplish, and to understand yourself in the proper context, to find what you are uniquely good at, and to find your community.

Labels can also be limiting when they are forced on you rather than willingly adopted, and the labels we generally adopt for ourselves, being informed by our subjective experiences, which only we are the experts in, tend to be more accurate to our actual lived experiences, while labels foisted upon us by others tend to miss the mark and cause the most harm. So really, I believe the dispute over labels comes down not to an actual issue with the use of any labels, but rather, who gets to control the labels? Who gets to control the narrative?

As already stated, even when autistic people aren’t labeled as such, we are still saddled with labels from others, labels which are pathologizing, dehumanizing, inaccurate and harmful. If we’re going to have labels anyway, we’d just prefer they were more accurate, and that we, as autistic people, should control our own narrative, not people who have never lived a day in our shoes.

The point is, autistic people are not broken neurotypical people. Autistic people are not diseased neurotypical people. Autistic people are not deficient neurotypical people. Autistic people are autistic people. While we are absolutely more than our physically-based neurology, it informs every single aspect of our human experiences here on this Earth.

In other words, is being autistic the sum total of our identity? Of course not, no more than “American” or “man” or “extrovert” are the sum total of a person’s identity.

There’s a reason why allies of minority groups are supposed to amplify rather than talk for (or talk over) minority voices; despite having empathy for these minorities, allies lack the fundamental subjective experience of actually being the minority.

Minorities should be given the basic respect of controlling the narrative of our own experiences, including the identifiers we prefer. After all, we are the only ones who are able to access the most reliable source of information, subjective experience, and there truly is no substitute for subjective experience, not even direct observation. Identifiers should not be enforced upon us, especially not by institutions which hold significant negative bias towards us or who want to abort us out of existence.

It is a courageous thing to stand up and say, “I am autistic” in a world that still mistakenly thinks autism is a bad thing. That’s not limiting oneself. That’s empowering oneself.

Those who argue with autistic people about how we identify, on the surface of things, are apparently trying to “save” us from limiting labels, while enforcing other, less accurate, more harmful and more limiting labels on us.

It’s not and never has been about the labels, themselves. It has always been about who is allowed to control the narrative.

Autistic people are taking back control of our own narrative. Part of doing that is taking back control over our preferred labels.

We are standing up and insisting on sharing our experiences, even and most especially when these run counter to the existing narrative of “autism-as-tragedy.”

We need the autistic label because without it, we still have labels, but ones which we didn’t choose, weren’t consulted on, and which harm our community and our well-being.

We’re standing up and we are speaking for ourselves now.

We are autistic.