There are no real “correct” answers to what an autistic person calls themselves or how they refer to their own autism. There are some phrases that may get a person in more or less trouble in certain situations; there are some phrases that are more or less popular inside and outside of the autistic community (in general, many people in the autistic community prefer identity-first language (I’m/they’re autistic) over person-first language (I/they have autism). But this isn’t true for everyone).
There IS a correct answer as to what other people (even other autistic people) call any one autistic person: their chosen terminology. Some (like me) aren’t particularly bothered by different terms and won’t be offended if you call me one thing or another (just don’t call me the r-word, please). But some people care very deeply one way or the other — this is a person’s identity we’re talking about here. So, even if you don’t understand or don’t agree with their choices, if an autistic person asks you to “please call me this / please use/don’t use these terms”, then the best course of action is to respect those choices and use/don’t use those terms.
“High/low functioning” versus “mild/severe” versus “high/low support needs”
I had recently made someone upset enough for them to ask an admin to remove my comment on a post because that comment used functioning labels in quoting a study relevant to the topic being discussed.
I mention this not to vilify or ridicule that person but to illustrate just how strong the dislike of function labels can run.
Functioning labels are seen as highly ableist and problematic in much of the community. To determine a person by their “functioning”, by their ability to perform certain tasks, doesn’t sit well with many — it reduces the strengths and challenges that lie outside of performing those tasks. It is often said that “high functioning” is used to downplay the challenges and that “low functioning” is used to downplay the strengths. If you’re labeled “high functioning”, your needs might be ignored because “You’re ‘high functioning’; you clearly don’t need that much help.” If you’re labeled as “low functioning”, your strengths and abilities might go ignored: “This person is ‘low functioning’. so don’t expect much from them / there’s not much we can do for them.” Not only is this unfair, but it also oversimplifies the matter; autistic people tend to have a wide array of strengths and challenges, being able to do some things very well and some things not well at all, and those strengths and challenges might vary by the situation or even by the minute. A person might be able to “function” well in work, school, or self-care skills in one situation or on one day but not have the resources/energy available to do it the next day. A person might gain skills over time that allow them to “function” better in those fields, or they might lose skills due to burnout / a co-morbid illness / stress or great tiredness.
Some have also extended this to the terms “mild/severe.” “Mild” is sometimes used in a similar vein as “High functioning” and “Severe” in a similar vein as “Low Functioning”. This is again over-simplistic; a person might be affected by some areas “mildly” and others “severely”, perhaps depending on the day or situation, and this, too, can change over time; a child labeled as “severally autistic” might not have the same level or types of challenges as an adult, and a child labeled as “mildly autistic” might burnout in adulthood and have a worsening of symptoms.
There are some who have even extended this to “high/low support needs” (which is my favorite of these three). Some have argued that it’s the same basic concept as “high/low functioning:, and some have brought up the point that how many and what types of supports a person might need is too variable to appropriately categorize as “high” or “low” — a person might need strong supports in one area but none in another (i.e. might be able to take care of all of their self-care needs but need many accommodations in school or vise-versa), and those support needs might change by the day.
I’ve even heard it argued that it’s ableist to imply that there are differences in “types” of autism; it’s all just “autism” with different presentations.
I’m frankly not sure how I feel about that. On one hand, autism is more complex, variable, and individualized than any dichotomy such as “high/low” or “mild/severe” can adequately define. There are too many facets of autism for a composite “average” of those facets to be meaningful in a lot of cases. On the other hand, though, I do see autistic people who have a very different autistic experience than I do, and I don’t think that it’s fair or helpful to either of us to ignore those differences altogether. I will never be able to speak on the experiences of someone who is non-verbal or who has an intellectual disability. That person in turn may never be able to speak on what it’s like to be a high-performing student who has high expectations set on her that she doesn’t always meet.
I’m not sure what the best route from here is. Do we eschew all such labels altogether and outline the specific areas of needs/strengths when it’s relevant? Do we pick a division-type and explain the specifics as we go? Do we all print out this color-wheel of affected areas by Rebecca Burgess on business cards to hand out to people we meet?
“Autism” versus “Asperger’s” versus “PDD-NOS”
In the United States, our DSM has not used the terms “Asperger’s” or “PDD-NOS” since 2013.
That doesn’t mean that individual doctors here won’t still use these terms, however, or that people who were diagnosed under these terms in the past won’t continue to use them.
The term “Asperger’s” has come into question since some less-than-great-things was made known about Asperger’s association with Nazi ideology. Some want to divorce themselves (and others) from the term because of this association with the eugenic notion that only “some types” of autistic people are “worthy”; some have argued that the term “Asperger’s” is similar to a functioning label. There are some who use that label to distance themselves from “other autistic people”, and many in the community have expressed that this attitude is hurt and that it promotes a lack of unity and a sense of superiority (i.e. the term “Aspie Supremacy“). If we all identify as “autistic”, then we can combat some of the stigma around autism and help to paint a clearer, broader picture of all that autism encompasses.
But there are some who identify with the Asperger’s label who don’t see themselves as “superior” to “other autistics” and who aren’t using the label to separate but to clarify. Many autistic people are detailed-oriented and like specifics. Some autistic people see terms like “classic autism” and “Asperger’s” and “PDD-NOS” as more specific than the general term “autism”. There are also instances in which one will get a different reaction if one mentions having “Asperger’s” than if one mentions having “autism” (“Oh, you’re not autistic! You can speak! You have a job! I have a child with real autism who bangs his head and wears diapers, and you’re nothing like them!”). While I definitely think there’s value in confronting that outlash (“‘Real’ autism is highly varied in its presentations and in how it affects each person at any given time”), I don’t expect any one person to be that confronter — there’s been times when I’ve told people that I have Asperger’s instead of autism because I’m uncertain of how they’ll react and I’m seldom in the mood to confront someone in spoken conservations (I’m especially prone to this if I’m talking to the parent of an autistic person).
There is also a sense of community built around the term “Asperger’s”. There was a popular internet form for many years, “Aspies for Freedom” (it still exists!). There are Asperger’s Groups and Asperger’s Social Clubs. And when there’s that emotional, social connection, it can be hard to lay a term down.
I’m not sure that PDD-NOS was ever a particularly popular term outside of diagnostics. PDD-NOS, or Pervasive Developmental Disorder: Not Otherwise Specified, is a term used to describe someone who presents with autistic symptomology but who doesn’t clearly fit the diagnostic labels of either Autistic Disorder (“classic autism”) or Asperger’s Syndrome. Since there is no adjective form of PDD-NOS (PDDie? [pronounced Ped-dee] PDD-Nostic? [pronounced ped-nossed-tic]), many people with this diagnoses just call themselves autistic anyway.
As I said when I discussed the Asperger situation a few days ago, I wouldn’t be disappointed if the term “Asperger” fell out of popular usage. I have no problem calling myself autistic (and often do these days) and agree that an increased sense of unity would be nice.
But I’m also not going to tell anyone that they’re wrong for identifying with Asperger’s or PDD-NOS. They’re autistic, sure, but if they want to paint their autism with a shade of specificity (especially since it’s problematic or difficult to do so with terms like “mild/severe” or “high/low functioning”), that’s their prerogative.
“I am” versus “I have” (i.e. “Autistic person” versus “person with autism”)
“I am autistic” versus “I have autism.”
In a literal sense, those two phrases mean the exact same thing. The Merriam-Webster definition of “autistic” is “of, relating to, or marked by autism or autism spectrum disorder“.
The common argument used to explain the differences between the two phrases is that one wouldn’t call a woman a “person with femaleness” or a Black person a “person with Blackness”; an openly gay person likely wouldn’t say “I have homosexuality” in the place of “I am gay.” None of these make up the totality of a person, but all of these are important facets of who a person is (a woman is female [trans, cis, or otherwise] ; a Black person is Black; a gay person is gay).
But this then boils down to whether or not one sees their autism as one of those important facets.
There was a post that someone shared on Facebook in which the woman being interviewed said: “Autism doesn’t define mine.” Quite a few comments were saying that autism did, in fact, define her by its very nature; it is a pervasive developmental condition, one that affects one’s perception and behavior, how one sees and interacts with the world. My comment (a genuine question that I never got an answer to) was something along the lines of “But what, actually, decides which characteristics of a person are the “defining” or “core” ones?”
I don’t know if there is an official metric of how a person is defined or not. I guess the most scientific way to go about it is to ask that person to quickly list ten things about themselves and then ask as many people as possible that know the person to quickly list ten things about the person and see what the commonalities are. But since that isn’t practical, I’ve always assumed that it’s up to the person to define themselves.
Not everyone likes to think of autism as a core part of who they are. Not everyone likes to associate their autism with their personhood — some people define themselves largely or solely by their personality traits and hobbies, which, while autism may influence the presentation or intensity of, autism doesn’t in and of itself affect.
Many of us do. I do see my being autistic as a central part of my personhood — it influences how I think, how I feel, how I move, how I behave, and how I interact.
But I think that those that don’t see their autism in that way are justified, too.
“Condition” versus “Disorder” versus “Disease” versus “Neurotype”
The current debate of the century: is autism itself pathological, or is it just being pathologized?
This comes down to the social model of disability versus the medical model of disability. Is autism challenging because of the autism itself, or is it challenging because society is not equipped to handle autism?
I think that both are correct, to a degree. A lot of autistic people struggle in school because schools are often not set up to accommodate the neurodiverse or fail to provide those accommodations appropriately and to everyone that needs them. A lot of autistic people struggle with employment because hiring managers are often trained to look for certain traits in an interviewee that are more common in non-autistics (i.e. eye contact, body language, providing certain types of answers in certain ways) and also because of difficulties in accommodation. Police are often not trained on how to interact with autistic people. Society as a whole has little understanding or accommodation for those who communicate in a manner other than spoken words. A common phrase in the autistic community is “I don’t SUFFER from autism: I SUFFER from other people.”
But there are aspects to autism that are organically challenging in and of themselves. The fact that I’m emotionally volatile will wear me out and sometimes leave physical marks regardless of how aware or accepting the people around me are. An overcrowded restaurant will drain me even if I’m allowed to wear my earplugs without judgment. People who struggle with motor challenges will find those challenging even with adaptive tools, ramps, and ADA accessible buildings. Some people do suffer from things that are a direct result of their autism.
Still, many people see their autism as a core part of themselves, and no one likes to see themselves as fundamentally “disordered.” That’s why many people prefer to refer to their autism as a “neurotype” than as a “disorder” or “condition”.
There are some who like to place the things that trouble them into co-mobids. Sensory issues as Sensory Processing Disorder. Motor difficulties as Dyspraxia or ataxia. Cognitive issues as Executive Functioning Disorder or as any number of learning disorders (ADHD, dyslexia, non-verbal learning disorder, dysgraphia, dyscalculia…). Emotional issues as a mood disorder or as Intermittent Explosive Disorder. Autism would thus be a neurotype that makes one susceptible to these co-morbids (just like having two X-chromosomes generally makes one suspectable to issues with the uterus or ovaries and having a Y-chromone generally make one suspectable to issues with the penis or prostate).
I don’t know where one would draw the line between the co-morbids and the autism itself; autism does genuinely affect emotional expression and sensory processing and executive functioning and, in some cases, motor movement. I do think that it’s useful to identify the areas that cause the most issue for a specific person and then map out ways to make those issues less problematic for that person.
But then I don’t think this is exclusive to neurodivergent people, either. I think that everyone can benefit from knowing if they, say, find it harder to be naturally organized or if they emotionally respond to situations in a certain way or if their cognitive style enhances or hinders certain types of thinking. At which point are any of these “disorders” and at which point are they natural variations in human behavior?
Because the things that help autistic people tend to lie in the educational/medical realm, and because there are medical and mental health issues common to autistic people, I do think it’s important to have some classification of autism handy. I wouldn’t be opposed to changing the term “Autism Spectrum Disorder” (ASD) to “Autism Spectrum Neurotype” (ASN), though I’m also not opposed to “Condition” because the word “condition” has a different connotation than does the word “disorder”. If something is “disordered”, then it is, by implication, not at its ideal state, whereas a “condition” is simply a parameter (i.e. “warm” is a condition of temperature; “low” is a condition of position; “for oily hair” is a condition of, well, conditioner).
But I’m not personally that fussed by the term “disorder”. It’s not the most ideal way to refer to autism, but then autistic traits and behavior are, by definition, outside of the order of expected traits and behavior (because if they weren’t, then most people would be autistic and, thus, autism wouldn’t be brought to medical attention and wouldn’t exist as a term).
As with everything else in the autism world, do what jives right with you and your autism. Just be aware of how certain terms may come across to others.
One thought on “Autistic Acceptance Month Day 27: Identity Labels”