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The response I most commonly hear when I disclose to someone that I am autistic is, “Wow, you must be really high functioning. I would never have known if you didn’t tell me.”

There’s a lot to unpack here.

While it is always problematic to try to interpret motivations behind the things that people say, as we can so often get it wrong, statements like the above have always struck me as a backhanded compliment – as if it would be a bad thing if they were able to detect my autistic traits. It seems to suggest the person saying statements like these at best views autistic people as “other,” and at worse, less than.

Statements of this flavor have always hit me as, “congratulations on appearing normal!” The thing is, I’m not “normal,” when the definition of normal is understood to be synonymous with neurotypical. I am different. And to be congratulated for appearing not to be different just feels… awful, really, because the condemnation for appearing different is implied in the enthusiastic congratulations for managing to appear normal.

Statements like these also perpetuate the myth that there are distinct, static levels of functioning. While there are currently three levels of autism specified in the current Diagnostic and Statistical Manual (DSM-5, the manual used by clinicians to define and classify mental and cognitive disorders and conditions in a standardized way) even these are not based on functioning labels. They are instead based on the levels of support required by the individuals who meet the criteria for each level, which I feel is a much better way to classify autistic people, if we have to be classified into distinct groups or levels within the autistic spectrum.

And that is because, just like any person, functioning changes from day to day based on a multitude of factors. How much sleep has the person had? How much stress are they currently under? Are they in a demanding environment where expectations are high? How is their nutrition? Is their environment intolerable physically (e.g., too hot, too cold, not enough sunlight, too much sunlight, etc.)?

No neurotypical person (neurotypical = a person who has developed neurologically in the same way as the majority of the population, in contrast to the smaller number of people who developed in neurologically different ways, like autistic people, otherwise known as neurodivergent people) is operating at peak efficiency 100% of the time. Sometimes, they may get run down with a cold, or thrown off kilter by unforeseen, unpleasant changes which suddenly cause their stress levels to spike. Maybe they have a fight with a loved one that so thoroughly absorbs their attention that they make careless mistakes at tasks they normally are quite good at.

If neurotypicals can experience fluctuations in their functioning based on personal and environmental stressors in a society that has been created to be accessible to the neurotypical majority, of which they are part, imagine how much this must be occurring in neurodivergent people, who are navigating a society which is not accessible to them.

Referring to an autistic person as “high functioning” denies them the help and accommodations they more than likely need to function optimally while calling an autistic person “low functioning” denies them opportunities to be included in things even as basic as conversations.

If people just cannot restrain themselves from having to differentiate different “levels” within the autism spectrum, then the most accurate way to do this would be to reference support needs, not functioning levels, just as the DSM-5 does.

That’s a great first step towards releasing autistic people from unrealistic expectations and the impact those expectations have on our ability to access the accommodations or the opportunities we need and deserve. But there’s one step further we must go to amend the type of thinking that lays behind the “you’re so high functioning” ilk of comments.

That next step is to dismantle the idea that autistic people at various support needs levels uniformly resemble one another and do not vary in the expression of their traits.

This step also includes cultivating the understanding that certain traits which are currently taken as indicators of certain levels of support needs, like the ability or inability to speak orally, have little to nothing to do with how much support and accommodations an autistic person may require and should not be used as indicators for the levels of support a person needs, much less as indicators for how well that person is perceived to function.

The blunted perceptions of autistic people need to be corrected and replaced with the understanding that even though autistic people are different from neurotypical people in certain key ways, we are still human, with human variations, and that there are differences between individuals on the same spectrum, and even between individuals on the same support needs levels within the same spectrum. We are not indistinguishable and interchangeable like the robots coming off a factory production line.

Even though autistic people require accommodations to thrive in this society, that does not mean we are deficient or less than, only that we are attempting to live in an environment that is custom-tailored to members of a neurotype different from our own. The manifestations of autistic traits on the autism spectrum are as individual and diverse as the manifestations of neurotypical traits on the neurotypical spectrum.

There seems to be a rather strange expectation in our society for every autistic person to adhere to a narrow list of traits and to exhibit an unusual homogeneousness in the manifestation of those traits, according to what level of functioning or support needs we are perceived to be operating at.

If we are portrayed as being able to speak orally, we are supposed to, according to the commonly held notions fostered by decades of inaccurate and contracted Hollywood portrayals of autistic people, be robotic, emotionless, always STEM savants, and usually male. We are supposed to be uniformly incapable of eye contact, of socializing, of tolerating the same exact sensory stimuli, etc. What’s more, if we are depicted as being able to speak, we are usually portrayed in the media as doctors who perform miracles, mathematicians and physicists who received our PhDs at the age of 11, and generally as people with above average or genius IQs. We are portrayed, essentially, as just slightly more reserved, slightly more quirky neurotypical people with superhuman intelligence and abilities, who can, for the most part, live independently and therefore be considered “high functioning.”

If we are depicted as being unable to speak, we are portrayed in infantilizing ways, as individuals who cannot live independently, as the embodiment of the current misunderstanding of what a “low functioning” autistic individual is like. If we are depicted in this way, we are usually always shown to be rocking, flapping, or injuring ourselves. Also, if we are depicted in this way, we are almost always portrayed as having intellectual disabilities, despite the fact that in reality, many autistic people who do not speak still have average, above average, and even genius IQs.

The point is, something like spoken communication is not an accurate predicator for functioning ability or the level of support needs an autistic person has, yet it persists in the social consciousness as the gold standard for understanding who is “high functioning” and who is “low functioning” It also leads people to lump all speaking (people they wrongly label as “high functioning”) and non-speaking (people they wrongly label as “low functioning”) autistic people together and to expect them to always look and behave more or less exactly like one another within their respective groups.

Why do we expect this uniformity among the autistic community but don’t expect every neurotypical person we meet to be exactly like every other neurotypical person we meet? Why is there room for individuality, for variation, for differences between one neurotypical person and the next, but the same room is not made for those things in neurodivergent people?

There are things all autistic people share in common or we wouldn’t all be diagnosed or considered autistic, that’s true. But we are all still individuals, and we all experience the world in unique ways.

A great and clarifying analogy I’ve seen used is that of comparing the autistic spectrum not to a gradient line of “more autistic” to “less autistic,” but to the sound mixing boards used in recording studios. The autistic mixing board is distinct from the neurotypical mixing board, but within those mixing boards are endless permutations and combinations of dial settings – one music track has the treble turned all the way up, but other attributes set to mid-ranges or turned down completely. If the dials are understood to be autistic traits, it begins to become a little clearer how, with the infinite possible combinations of dial settings, each autistic person could share the commonality of using the same mixing board (being on the same spectrum) while expressing truly unique mix of autistic traits.

Worth mentioning, however, is that autistic people are more than the sum of our “autistic traits.” We are, truly, individuals, with individual personalities, distinct likes and dislikes, talents and struggles, all informed by the cultures within which we were raised and the world views we have acquired as a result. You don’t meet one neurotypical person and think that that person is representative of the rest of the neurotypical population, but a strange phenomenon exists where, if a neurotypical person meets one autistic person, especially if that autistic person is a child, they then judge every new autistic person they meet by the first they encountered, and will reject the idea that someone could truly be autistic if they don’t exactly match the description of that first autistic person they met. Example? People who say, “you’re nothing like my autistic nephew! You can’t be autistic!” Indeed, I am not just like your autistic nephew, because I’m not an 8 year old boy! Not only am I am a high-masking autistic adult, I am a unique individual, as all autistic people are. We are not all the same.

There’s a saying in the autistic community: “If you’ve met one autistic person, you’ve met one autistic person.” It is so very, very true. The tendency is for the predominant neurotypical population to expect absolute uniformity across the autistic spectrum and when that uniformity isn’t forthcoming, to then explain differences away by assuming that there are different functioning levels, and that within those functioning levels, there is uniformity, giving rise to the, “wow, you must be so high functioning” comments.

That comment boils down to, “you are different from the narrow list of traits exhibited by Hollywood portrayals of autistic people and the one or two autistic children I have met or heard of in my life, therefore you must be Autistic Lite.” When in reality, our outward traits have very little to do with how well or how poorly we function day to day, or how much support or accommodations we need in order to get by in this society, and that within support needs levels, there is still a sparkling panorama of personality and neurological traits, every bit as diverse as the sparkling panorama of personality and neurological traits found in any sampling of the neurotyoical community. (And as an important aside: a disturbing amount of Hollywood portrayals of autistic individuals are written by non-autistic individuals and played by non-autistic actors and at best represent what neurotypicals imagine it is like to be autistic, not a true depiction of the autistic experience.)

One autistic person may be able to speak well orally, but require substantial support to the point where they are not able to live independently. Another autistic person may not be able to speak well orally but requires less daily support. Another autistic person may experience significant distress in environments with overlapping, loud sounds, while another autistic person isn’t bothered by them, but cannot handle the sensation of certain fabrics. Some autistics may be socially outgoing but less able to pick up on social cues and so are less aware of when they are rubbing people the wrong way, while other autistic people may be less socially outgoing but highly sensitive to the way others are perceiving them.

I am a person who can convincingly speak orally (for a short time, anyway) and this has led people to believe that I must, then, be “high functioning.” But really, I am more like a domesticated parrot, with an uncanny knack for mimicry that misleads others into believing that I understand the social nuances of what I am saying or why I am saying it, when in reality, I am more or less just repeating words I have observed others using in certain situations with success. Hang around me for long enough and you’ll realize there’s a limit to my verbal repertoire. I come across as much more socially competent than I really am. I may come across as someone who could absolutely live on my own, but in reality, I require a lot of help in order to survive. In defiance of the commonly held belief that speaking autistic people are “high functioning” and do not require a lot of support or accommodations, I actually am at the “moderate support needs” level.

If we were to flatten the three dimensional autistic spectrum to that familiar two dimensional gradient line, the one which progresses from “low functioning” or “more autistic” to “high functioning” or “less autistic” (again, with all of those labels being fundamentally inaccurate) and we replace “low functioning with “high support needs” and sub in “low support needs” for the “high functioning” label, we would have a gradient that, while still very limited in scope, is at least more accurate than “low/high functioning.” On this improved gradient, I would actually be somewhere in the middle.

I am a damn, damn good masker, meaning, I am able to so convincingly downplay and hide my autistic traits and emulate neurotypical traits that I can hardly blame someone for perceiving me as a neurotypical person, or that my support needs are lower than they really are. Indeed, to a certain extent, it’s my fault that I have received statements like, “Wow, you’re so high functioning! I would have never known if you hadn’t told me” because my mask is too good.

But I’m not high functioning. I’m high masking. And my mask is also an involuntary coping mechanism which began at a phenomenally young age and operated under my conscious awareness for the majority of my life, until I was diagnosed as autistic and even consciously learned what masking even was. When you grow up constantly receiving feedback that your natural behavior is strange, unwanted, and alienates you from others, your primal human urge for social connectivity overrides your authentic expression without even any conscious decision on your part. It’s essentially a “fawn” reaction in the fight-flight-fawn-freeze response, which is controlled by the autonomic nervous system, not by conscious-level decision.

Sherry Gaba, LCSW says in this article:

“As the fawn response is developed early in childhood, it can be difficult for an individual to recognize it is occurring. However, there are some key signs that the fawn response is in use when:

· You look to others for how you feel in a relationship or a situation

· It is difficult to identify your feelings, even when you are alone

· You often feel like you have no identity

· You are constantly trying to please the people in your life

· At the first sign of conflict, your first instinct is to appease the angry person

· You ignore your own beliefs, thoughts, and truths and accept those of the people around you

· You may experience unusual emotional responses when issues do not involve people of importance in your life. This could include emotional outbursts at strangers or sudden sadness throughout the day.

· You feel self-anger and guilt some or most of the time

· Saying no to those around you is a challenge

· You are overwhelmed at times but take on more if asked

· You lack boundaries and are often taken advantage of in relationships

· You are uncomfortable or threatened when asked to give an opinion”

Given this clinical description of the fawn response, it is clear that autistic masking is perhaps a type or subset of this response. The neurotypical social world is confusing and often hostile to us, yet we still need to have our most basic human needs met. Interdependence is hard-wired into our brains-it is how our species has survived and evolved. Of course our brains and nervous systems would perceive social ostracism as a threat to our survival, because it is. Of course our brains and nervous systems would choose the best available coping mechanism to deal with this struggle. Fighting isn’t the optimal solution, as that can worsen the ostracism, even to the point of being removed from society and placed in prison. Flight isn’t the optimal solution, as one is fleeing the very social contacts they need. Freeze isn’t the optimal solution, as that would also worsen the ostracism. And so, what’s left? Fawn, mask.

But as we age, regardless of whether we are autistic or neurotypical, our energy levels tend to decrease, and we no longer have the energy to keep up masks or to keep up appearances if those appearances are inauthentic to the ways that we really are. This is, at least partially, why people begin to really seem to come into their own in their 40’s, 50’s, and beyond, and stop caring so much about what others think of them.

I know that for me, personally, as I age, I have less and less ability to engage in the fawn response that is autistic masking. I don’t have the energy to perform like a parrot all of the words and customs I have gleaned from observing neurotypicals in social settings my entire life. But because this masking response is deeply rooted in the deep, primal need for social connectivity that we all feel as humans, and because it has become an automatic reflex, it is virtually impossible to choose to stop masking in the presence of others, even when I desperately want to.

To cope with this, I have limited the amount of time I spend around others. I almost never leave my home. I never answer my phone. I have all but lost the ability to FaceTime with family who live several states away, which has weighed heavily on me as those relationships are so important to me to maintain, and I want to maintain them. Many of my family members find it more difficult to keep up with communicating in writing than they do communicating orally, but I still can’t bring myself to do it.

I am perhaps becoming more noticeably autistic as I age, but I have been the same “level” of autistic my entire life, and as far as I’m concerned, there is only one true level of autism, and that’s being autistic.

I once saw someone describe it like this: one cupcake is vanilla and has sprinkles, another cupcake is blueberry and has no frosting or sprinkles. You wouldn’t ask one of these cupcakes “how cupcake are you?” They are both equally “cupcake”, even though they have some different attributes. Further, a blueberry cupcake, despite sharing the attribute of blueberries, is not the same as a blueberry muffin, so it would be wrong to call a blueberry muffin “a little bit cupcake.” They’re not the same thing, but a cupcake is a cupcake no matter the flavor. In other words, no one is “more” autistic or “less” autistic, just autistic with different attributes and different presentations of traits, and neurotyoical who share some attributes with autistic people are not “a little bit” autistic. It’s like being pregnant, you either are or you aren’t pregnant, but there is a wide variety of ways in which people experience pregnancy. Someone who isn’t showing much of a bump or experiencing noticeable pregnancy symptoms is still every bit as pregnant as someone who looks massive and has every stereotypical symptom out there. But if someone is moody or nauseas that does not make them “a little bit” pregnant.

But in terms of how I present outwardly, as I age, I just used to have a lot more energy to be able to keep up with the need to blend in so that I could be accepted and acquire the things needed for survival, like jobs (which I never have been able to keep, because despite my ability to mask in interviews well enough to get the job, I lack the ability, without significant accommodations, to do the job I have been hired for, and if that doesn’t underscore the point of why it is not wise to judge autistic people by arbitrary measures of “functioning” levels, then I don’t know what will!)

Some days, I have more energy than others, more command of executive functioning cognitive abilities, and I may have the energy to mask, as well as the energy to whizz through the house taking advantage of the extra bandwidth to clean the dishes, do the laundry, and do all the things I can’t do on days when I struggle more with these things. If someone were to observe me on a day when I am functioning better, they could mistakenly think, “see? Kai is totally capable of doing these things! That must mean she just isn’t trying the rest of the time.” And then they could expect that level of functioning from me all the time, when I truly am only capable of functioning at that level some of the time, and it is generally out of my control when I will be able to function that way.

But every day, I am not able to live independently. Even though I have days where I can function better than others, I would need to be able to function at least as well as my best functioning days consistently to be able to do things like hold a job, do my own grocery shopping, cooking, cleaning, and bathing, and as my functioning varies from day to day, I cannot reliably, consistently maintain these things.

Even though there are plenty of autistic people who can work outside the home, I am not able to (because of a combination of my cognitive struggles as an autistic person with a PDA, Pathological Demand Avoidant, profile, and someone with several forms of dysautonomia, or autonomic nervous system disorders and sleep disorders) I can’t safely drive, so I don’t. Even trying my hardest to keep up with simple every day chores like dishes, laundry, cleaning and organizing, the house inevitably gets to the point where my husband has to help me get it back on track, and then I am able to keep up with it for a short time before it gets to that point again.

The point is, my support needs are not low. I require substantial support. Yet, if you were to meet me in a social setting, on a day where I have the mental bandwidth and clarity and energy to be able to convincingly mask, and if you were under the incorrect assumption that being able to speak orally equates to being “high functioning” or “low support needs” then you may make the mistake of thinking that I don’t require as much support and accommodation as I, in reality, do.

My functioning is not a consistent, static thing, and what people are really saying when they call me “high functioning” is that they think I seem like someone who can function “normally” in the world, work a job, live independently, etc., and their assumptions are based on attributes which have absolutely no correlation to my ability or inability to do those things, like my ability to speak orally and convincingly mask, without knowing anything about how I actually function day to day. There are days where I need help getting out of the bath, where I need someone to cook for me (or for the kids), where I cannot do something as simple as fill out a form. There are other days where I can do complicated tasks. My ability to function fluctuates, while my need for a reliable and consistent support network is never changing. I always need it to be there to catch me on the days when I fall down in certain areas.

As a society, we need to abandon these inaccurate and mythologically-based functioning labels and to move towards support need labels. Even the more accurate support needs labels aren’t entirely accurate, because my need for supports can also vary from day to day, but they are at least a hell of a lot more accurate than functioning labels. Taken as an average, my needs for support do tend to settle somewhere in the middle, so I feel comfortable saying that I am an autistic person with moderate support needs (which would be ASD 2 in the DSM-5). Could functioning levels be averaged out the same way? I suppose, but I regard functioning levels more like the day to day weather and support needs more like long-term climate patterns; long-term patterns are much more accurate than the more erratic and fluctuating daily trends.

Also, I’ll end off with this: why do you even need to know someone’s support needs level unless you are a caregiver or potential caregiver for that person, or someone such as a teacher who is needing to create an IEP (an Individual Education Plan) to accommodate a child in a school setting? In other words, outside of official roles of caregiving or professional connection, what does it matter to you whether someone you’re meeting needs higher support or lower support accommodations? Why can’t we just simplify it and ask a person what accommodations they might need and then provide them, with no more questions asked? Why express your opinion of a person’s functioning to them upon them disclosing their diagnosis to you? All it does is reveal your bias.

Functioning labels are inaccurate and harm the autistic community by leading others to doubt both our strengths and our weaknesses, to refuse us help or understanding, or to refuse us the opportunities to participate in life, relationships, or the professional world. They do not reflect reality, they reflect glaring misunderstandings of the actual experiences of autistic individuals. They strip us of our individuality and our humanity and cause others to view us as automatons and that if we don’t fit a very limited scope of traits, we must not really be autistic and must not really require accommodations or understanding.

So along with the labels, let’s leave the bias in the dust, too, shall we?Posted bytheautisticambassadorOctober 23, 2021Posted inBlog, UncategorizedTags:autism, autistic, autonomic nervous system, bias, dysautonomia, fawn response, functioning labels, functioning levels, high functioning, low functioning, masking, neurodivergent, neurodiversity, neurotypical, support needsLeave a commenton High Functioning vs. Low Functioning: Why Functioning Labels Hurt the Autistic Community

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 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 systemic oppression, for that matter), 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. 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 proudly say 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. Posted by theautisticambassadorOctober 21, 2021 Posted in Blog, Uncategorized

Tags: autism, autistic, bias, label, labels, masking, neurodivergent, neurotypical4 Commentson Why Do You Need a Label, Anyway?

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