Apparently, this is the third post in an unintended-but-happily-accidental series of vocabulary-related posts.
The other two can be found here:
- Asperger’s/autism vocabulary 101 ~ An introductory primer
- Asperger’s/autism vocabulary 201 ~ a proposal toward a 21st-century shift
And now, moving on to what has become a Part 3 of sorts…
Autism awareness does not mean simply knowing that the condition exists.
We have to go further than that.
True autism awareness also means being aware of subtle (or not-so-subtle) words and phrases (and the ideas they convey) that continue to keep us regarded as inferior or somehow “lesser”. (Going one step further, autism acceptance is agreeing with–or at least respecting–our objection to those words and phrases and the effects they have on the autism spectrum community, and as a result, doing one’s best to avoid using those words, phrases, and ideas altogether.)
In recent months, I’ve been compiling a list of those words, phrases, and concepts as I’ve come across them. I decided to combine them into one post dedicated to the subject for easy reference.
That’s the extent of my introductory small-talk ability, so here we go…
1 – “Affected by (autism)” – a brief visit to an online thesaurus reveals some pretty depressing synonyms. A few examples include: “damaged”, “distressed”, and “troubled”. Although there are some positive associations, such as “impressed” or “touched”, we pretty well know that when, for example, an unnamed puzzle-piece charity group claims to “help families affected by autism”, they don’t mean “impressed by autism”. Those entities view autism in a very negative light. This is offensive to most people on the Asperger’s/autism spectrum (based on my observations and experience thus far); we generally don’t perceive our spectrumhood to be a negative attribute, and we tend to resent (often strongly) those who do.
2 – “Afflicted by/with (autism)” – (the discussion from above applies here, so I won’t repeat myself).
3 – “Coping with (autism)” – another quick jaunt over to an online thesaurus yields other synonyms with highly negative connotations, such as “suffer”, “grapple”, “wrestle”, and “endure”. I will readily concede that we don’t have it easy. We do suffer, grapple, wrestle, and endure–but not in relation to our spot on the spectrum. Instead, we suffer, grapple, wrestle, and endure some of the words, thoughts, and actions of other people, usually those who are allistic (non-autistic). We cope with bullying, criticism, misinterpretation, misunderstanding, abuse, dishonesty, sensory stimuli, and differences. We’re usually OK with who we are; it’s when we have to try to interact with–and function within–the rest of the world that we become distressed. That’s what we cope with.
As for other people close to Aspie/autistic people (such as parents, caregivers, teachers, etc), their coping is miniscule compared to ours. The world is already geared for them. They can interact and function effortlessly….or at least, much more easily. They already have the advantage. Whenever they complain of “coping”, it’s usually in reference to their inability to relate to us or measure us by their yardstick (the latter of which is a futile effort anyway). What they’re really complaining about is their own inability to dilate their minds long and far enough to consider other perspectives or options. (All this complaining by NTs (neurotypical/allistic/non-autistic people) might actually be a sign of lower intelligence…but that’s just my theory, and it certainly doesn’t apply to all NTs–just the whiners.)
4 – “Cure”, in reference to a desire or effort to find one for autism – here again, most people on the autism spectrum don’t actually want to be “cured”. In fact, a lot of us have expressed fear toward the intensity with which groups of scientific researchers are working toward finding one. The reality is, our Asperger’s/autism makes us who we are. It’s not like we would be the same people without it. It’s not like getting rid of our Asperger’s/autism would somehow make us “whole”, “pure”, or “unadulterated”. We would actually become different people, with entirely different core personalities. The reality is, we’re whole, legitimate, valid, and complete people, Asperger’s/autistic or not.
5 – “Dealing with (autism/autistic people)” – this is similar to the “affected/afflicted” and “coping” descriptions above. One word of (admittedly unsolicited) advice for NT/allistic people: if you’re using the words “dealing with” in a neutral, non-critical sense (such as “I’m a therapist who deals with autistic people”), and you don’t mean anything negative by it, I might suggest using the words “interact with” instead.
6 – “Defect” or “defective” – luckily, this term is rarely used. However, it’s prevalent regardless–it’s simply unspoken. The sentiment is there, at full volume. This post isn’t just about changing words, but also the concepts, beliefs, and ideas that those words convey. Some of those words are unspoken, but persistently felt. The message that we’re somehow defective comes from a wide variety of sources, whether it’s the media, the education system, or even our own families.
7 – “Disabled” or “disability”, without also mentioning other positive aspects – at times, we, the spectrum people, might lament about how our neurological orientation affects our daily lives or interactions with others. But that’s our place to do so (it’s our situation, after all); if you’re non-autistic, it’s not yours. Sometimes, we feel–and are–disabled, and yes, sometimes that disability is rooted in our autistic orientation. But if you’re non-autistic, you’re not us. You don’t know what we face or experience. And it can be really tough to listen to a neurotypical person go on a diatribe about everything that’s bad about autism, especially if it’s coming from a parent or teacher, someone in a position of authority, whom we often look up to and seek acceptance, approval, or guidance from. It doesn’t hurt to mention our positive traits, too.
8 – “Disease” – as obvious as this may seem, it’s tricky, because when one examines the definition on its surface, it appears legitimate. A comprehensive version of the definition is as follows: “disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness”. (Deep breath…) Practically every authoritative informational source will tell you–and they could be right–that autism stems from genetic and/or developmental abnormalities. Some of the “other” “experts” will make claims about toxins, gastrointestinal abnormalities, mercury exposure, or other chemical ingestion…the list goes on. Who knows; they may be onto something, too. But look again–sneaky words and phrases like “error” and “disordered or incorrectly functioning” arguably invalidate autism as a disease, especially since some of the (better) more forward-thinking experts are advocating the “neurological variant” concept.
9 – “Disorder” – this one is even trickier, because people of the spectrum community often use it ourselves, either in full or as part of an abbreviation (such as “ASD” for “Autism Spectrum Disorder(s)”). While “disease” has stronger associations with infection or the result of chronic nutrient imbalance, the word “disorder” is much more broad. “Disorder”, as it is commonly understood by most, could refer to any type of below-normal function. But here again, we’re vindicated, especially in the eyes of the neurodiversity paradigm, which holds that neurodivergent classifications are “normal (even if not common) variants” (“normal” in this case means “non-pathological”, i.e., non-problematic).
10 – “Function(ing)”, as related to “high-” or “low-” functioning levels – a growing sentiment in the Asperger’s/autistic community is one of objection of–and opposition to–high-vs-low-functioning labels. As I understand (and experience) it, the general disagreement lies in the fact that our ability to function at any given moment depends on a plethora of factors, some of which are fixed and most of which are fluid (in a constant state of flux). Another argument against these labels is that they can be wrong; someone who appears “low-functioning” may actually be quite brilliant or talented in a (or more than one) particular way or area. A function-level assessment is largely at the mercy of the professional conducting the evaluation, and the yardstick used to measure us is imperfect, if not incorrect altogether.
11 – “Lazy” or “laziness”, as an accusation/assumption of autistic people’s apparent “inactivity” – as some of you know, I’ve dedicated a post to this topic, so I won’t repeat myself here.
12 – “Mild (form of autism)” – this term is also tricky, not only because “official” or “authoritative” sources of information often use the “mild” term to describe Asperger’s, but also because Aspies ourselves often describe our Asperger’s that way. It’s an incredibly common mistake. Of course, it’s not a mistake for some; some people really do experience their Asperger’s more mildly (before we object, we must remember that we’re not them, we can’t possibly know what they experience), and that they may consider their Asperger’s as “mild” because they don’t experience its interference in their lives much, or haven’t had to alter their lives around it very much. So to them, I give an easy pass; they’re allowed. But if the word “mild” is used by anyone but an Aspie talking about their own situation, that’s not correct.
13 – “Prevention” – (the discussion from the “cure” entry applies here, so I won’t repeat myself).
14 – “Psychiatric” (or any variation thereof), as applied to autism – as mentioned above and elsewhere on this site, Asperger’s/autism is a (normal) neurological or neurodevelopmental variant or variation. It is NOT a psychiatric disorder/disease or mental illness of any kind. Indeed, we may have psychiatric manifestations, such as depression, anxiety or irritability, but it’s crucial to understand that most of these are brought about by two uncontrollable neurological factors: 1) over-stimulation (especially in the case of anxiety or irritability) and 2) challenges involving how the rest of the world treats us, interacts with us, or is (not) geared for us (especially the experience of depression). It’s also true that people on the spectrum seem to experience psychiatric or psychoemotional issues a bit more often than the general population. But however tempting it may be to think of Asperger’s/autism itself as a psychiatric issue, it’s simply not.
15 – “Severe (autism)” – some autistic people seem to have it tougher in general, while others seem to have easier lives. Some autistic people (especially children) may appear to have more prevalent, frequent, and intense autism-related symptoms. However, consider the possibility that their autism orientation may not be any more “severe” or intense than anyone else’s. (Stay with me here.) It’s possible that that person may be dealing with or exposed to environmental surroundings, non-autism-related physical/mental/emotional ailments, or other stimuli that are irritating the hell out of their nervous systems. Their autistic orientation will influence practically every aspect of their lives, including how they experience and express distress. If anyone (whether on or off the spectrum) is experiencing discomfort, annoyance, a health ailment, etc, they’re going to be distressed; we don’t call that “severe neurotypicality” and thus, we shouldn’t call it “severe autism” when displayed by an autistic person. And of course, there’s also a negative connotation, which is then transferred to the autism itself (and thus the autistic person). May I propose the more-neutral “intense” and “level of intensity” instead? 🙂
16 – “Tantrum” – there’s a difference between tantrums (voluntary disruptive behavioral displays, usually in response to not being given an object or one’s own way) and meltdowns (behavioral manifestations of involuntary neurological responses, usually in response to overload or overstimulation of one’s nervous system). Non-autistic children (and some adults, unfortunately) have tantrums; autistic people (of any age) have (almost) a near-monopoly on meltdowns. Please–if you’re not intimately familiar with the distinction between the two terms, don’t use either term until you are. I’ve also dedicated a post to the difference between the two terms.
I need to make myself really clear: I’m not trying to be a part of the “Autism Police”. I’m not going to tar and feather anyone for using the words above. People aren’t simply born knowing this information; it has to be taught. Just like we would hope that a parent would raise a child with compassion and respect, I definitely try to approach both the autistic community and non-autistic population alike with that same compassion and respect. Tolerance, acceptance, and dignity are important.
For some of us within the Asperger’s/autistic community, any one or combination of the words above might present a “trigger” of sorts, setting off negative emotions that might result in a tirade or an attack…or alternatively, a retreat and/or disappearance. Each Aspie/autistic person’s triggers are different, and some things are more common triggers than others. From what I know, most of us do have triggers. I’m still learning mine. Some of the words above might qualify.
But I’m not going to ostracize you.
If I did, I’d be shutting down a good Teaching Moment/Learning Opportunity…
…which would help no one.
And my entire goal is to help. 🙂
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