Such a needed post. It’s really disappointing that the move to talk about Autism in terms of support needs hasn’t come with more discussion about what those material needs are for people who truly are nonverbal. I’m Autistic and work as a support worker for other Autistic people, many of whom are nonverbal, and it’s so frustrating to see the people I care for so overlooked within the community we’re supposedly sharing.
Thanks for your comment, and I’m glad you agree especially as someone who works so closely with Autistic people. It’s been insane to watch the conversation become dominated by those who are least in need of it!
as someone w ocd who hears things like "i'm so ocd" all the time, i definitely get it. this sort of semantic bleaching has happened all throughout history and will continue to happen. the solution has always just been the invention of new words. for the most part, once the original meaning is gone, it is gone.
I am autistic, lower support needs, and “go non-verbal” at times of high stress, usually attached to a shut down, or after a meltdown. I used to call it selective/situational mutism, which is, as far as I know, the correct term, but with that term, I encountered more confusion regarding the ‘selective’ part. “So you choose not to speak?” No, I cannot help it. When I need help, need lights turned down, noise to be shut off, taken to a safe place, hugged for pressure, sometimes, I cannot communicate those needs.
I must have completely missed the internetification of “non-verbal” and am feeling accepting/resigned about it. It was bound to happen, but I suppose I will let people in my real life know about this confusion of terms, how it’s not about being shy or sussing out the vibes. And as I am currently writing about my own journey with ASD, I will focus my attention on getting this differentiation across. Thank you for this piece!
i'm autistic and experience a similar thing of "going non-verbal" when i'm overstimulated, shutdown or having a meltdown. i use "verbal shutdown" to describe those instances. that may lead to less confusion for those around you?
yeah, I suppose that could work. I think there's always going to be some sort of confusion around terminology, especially as most people around me know very little about what it actually means to be autistic, unfortunately.
why? people conflate and abuse prescribed usage all day every day, it's how language evolves, giving birth to terms such as idk "dissociation"—no one has a monopoly on its use, intent matters, and that word will be woefully outdated to describe a constellation of symptoms in less than a decade guaranteed.
you conflated minor psychological resentment-based discomfort with phrase skin crawl AND i bet u a nickel u did so without thinking about those who suffer from delusion parasitosis
Wholeheartedly agree. Thank you for voicing this. As the parent of a child who has high support needs and doesn’t use words as her main form of communication it’s vital that there is understanding around this. Thank you also for discussing the different levels of need, there needs to be more education and discussion of this. Huge swathes of the disabled community get disregarded. Our use of language matters, thanks for using your voice so powerfully x
i feel similarly with ppl online saying their “intrusive thoughts won” instead of impulsive when they decide to push a cup off a table or something stupidly small. makes me want to say my intrusive thoughts outloud to make people understand what they actually are because im sure they aren’t having thoughts of stabbing the toddler they’re watching with the knife they got out to cut grapes. intrusive thoughts are scary and isolating.
also - i just want to point out that disabled people who are always non-verbal are not the sole representation of this. i agree with your take that this co-opting of disability language is harmful, but as a low level autistic i do in fact go non-verbal when i’m in meltdown. i used to follow autistic creators on instagram and recently had to unfollow most of them because their content started to feel very over-performing-disability, maybe that’s just me
As someone with language and speech as a usual part of my human interface toolkit, I'm left at a loss for an easily memorisable phrase to blurt out at my friends who want to know what's up with me when I have the occasional hiccup in my wordification stations. Since before it was a hip internet fad I think I've often just put the word 'verbal' with a negation before it as a way to get across something of my state to people I love in the moment. I technically could speak but trying to do so and act like my usual social self would typically bring on a panic attack. So I like to keep one learned-off phrase handy to use so my friends don't overreact when I need to go... <insert phrase we're all ok with for whatever we want to call the curious state it's very helpful and restorative for me to go into at those times>.
I think my point is, it may not work to just take words away that people are using to communicate useful stuff to the people around them. If people make a song and dance about it on the internet and that irritates people it's a different story. And if they steer awareness away from people in more need of care and awareness that's a different story again. But having your words slip away for a brief holiday from your brain can still be a weird and scary experience for lots of people and for those around them. I once had a bout of low blood pressure and partially lost my vision and had to tell my boss at work so I could go home. Should I have been more careful in that moment to avoid the word "blind" because some people are permanently blind whereas I was only temporarily so? Does it not still make sense to say that one is temporarily a bit nonverbal? If anything those experiences give me a window of appreciation into "woah I wonder if that's something like how some people feel all the time?"
Maybe you or anyone else can suggest other words we can use? Maybe you'd be on for helping us relatively functional humans with occasional minor-by-comparison glitches find our language so that we don't take it from where it's more needed but still have our own communicative tools?
Great point! At the end of the day language is a tool and something that evolves. I fail to see the practical use of splitting hairs to this degree. I have ADHD, am I neurodivergent enough to use such-and-such word? What actually changes if I do or don't?
prettyweirdg0rl on tiktok had this excellent podcast episode about disability content and the watering down of what it's like to have adhd - how people draw individual characteristics of adhd they may relate to and make it into this cute quirky thing as opposed to a very complex learning disability. people who say things like "neurodivergence is my superpower" etc are saying that to distance themselves from people whom it is not a "superpower" but something that excludes them from having certain aspects of a safe public life
I’ve begun to use nonspeaking instead of nonverbal. I’m autistic and sometimes cannot speak but nonverbal in its original sense doesn’t fit, and nonverbal in the Left meme sense doesn’t fit. Not being able to legibly communicate my needs is scary, and the nonverbal memes act like it’s a haha quirky thing. Curious what your brother’s relationship to communication/fear is. Thank you for this wonderful essay. A similar thing has been happening with people calling headaches migraines; I now name specifically what the pain is doing to me instead of “I have a migraine” because migraines are no longer taken seriously as legitimately debilitating
this is so so important !! i’ve written about the recent rise in the misuse of phrases to do with mental health + disability but wasn’t sure how to approach this term because i don’t have personal experience with it. you’ve explained things so clearly. i wish everyone could read this
Me when I write an article arrogantly assuming I know more about other people than they do themselves. Me when I don’t understand some people really ARE interoceptive enough to understand they’re feeing a certain way, like the feeling you cannot muster up enough energy or mental power to speak and thus being in a state of “being nonverbal”, even though they don’t meet the strictest clinical definition. Me when I have a severe lack of empathy and insight or perhaps am using this as a sort of power trip for more nefarious reasons stemming from my psyche. Me when this article is a load of bs.
Thank you for writing this very needed piece. You’ve put to writing some things I’ve been struggled to say in real life and I look forward to bringing up the points you mentioned here when discussing these topics with others.
Such a needed post. It’s really disappointing that the move to talk about Autism in terms of support needs hasn’t come with more discussion about what those material needs are for people who truly are nonverbal. I’m Autistic and work as a support worker for other Autistic people, many of whom are nonverbal, and it’s so frustrating to see the people I care for so overlooked within the community we’re supposedly sharing.
Thanks for your comment, and I’m glad you agree especially as someone who works so closely with Autistic people. It’s been insane to watch the conversation become dominated by those who are least in need of it!
as someone w ocd who hears things like "i'm so ocd" all the time, i definitely get it. this sort of semantic bleaching has happened all throughout history and will continue to happen. the solution has always just been the invention of new words. for the most part, once the original meaning is gone, it is gone.
I am autistic, lower support needs, and “go non-verbal” at times of high stress, usually attached to a shut down, or after a meltdown. I used to call it selective/situational mutism, which is, as far as I know, the correct term, but with that term, I encountered more confusion regarding the ‘selective’ part. “So you choose not to speak?” No, I cannot help it. When I need help, need lights turned down, noise to be shut off, taken to a safe place, hugged for pressure, sometimes, I cannot communicate those needs.
I must have completely missed the internetification of “non-verbal” and am feeling accepting/resigned about it. It was bound to happen, but I suppose I will let people in my real life know about this confusion of terms, how it’s not about being shy or sussing out the vibes. And as I am currently writing about my own journey with ASD, I will focus my attention on getting this differentiation across. Thank you for this piece!
i'm autistic and experience a similar thing of "going non-verbal" when i'm overstimulated, shutdown or having a meltdown. i use "verbal shutdown" to describe those instances. that may lead to less confusion for those around you?
hey moon,
yeah, I suppose that could work. I think there's always going to be some sort of confusion around terminology, especially as most people around me know very little about what it actually means to be autistic, unfortunately.
When people conflate “dissociation” with spacing out, it makes my skin crawl. Thank you for this extremely necessary piece!!
why? people conflate and abuse prescribed usage all day every day, it's how language evolves, giving birth to terms such as idk "dissociation"—no one has a monopoly on its use, intent matters, and that word will be woefully outdated to describe a constellation of symptoms in less than a decade guaranteed.
you conflated minor psychological resentment-based discomfort with phrase skin crawl AND i bet u a nickel u did so without thinking about those who suffer from delusion parasitosis
“Spacing out” actually is dissociation, or at least spontaneous hypnosis.
Disassociation is a clinical term, spacing out is an informal term.
Wholeheartedly agree. Thank you for voicing this. As the parent of a child who has high support needs and doesn’t use words as her main form of communication it’s vital that there is understanding around this. Thank you also for discussing the different levels of need, there needs to be more education and discussion of this. Huge swathes of the disabled community get disregarded. Our use of language matters, thanks for using your voice so powerfully x
i feel similarly with ppl online saying their “intrusive thoughts won” instead of impulsive when they decide to push a cup off a table or something stupidly small. makes me want to say my intrusive thoughts outloud to make people understand what they actually are because im sure they aren’t having thoughts of stabbing the toddler they’re watching with the knife they got out to cut grapes. intrusive thoughts are scary and isolating.
also - i just want to point out that disabled people who are always non-verbal are not the sole representation of this. i agree with your take that this co-opting of disability language is harmful, but as a low level autistic i do in fact go non-verbal when i’m in meltdown. i used to follow autistic creators on instagram and recently had to unfollow most of them because their content started to feel very over-performing-disability, maybe that’s just me
I get the important message here
AND
As someone with language and speech as a usual part of my human interface toolkit, I'm left at a loss for an easily memorisable phrase to blurt out at my friends who want to know what's up with me when I have the occasional hiccup in my wordification stations. Since before it was a hip internet fad I think I've often just put the word 'verbal' with a negation before it as a way to get across something of my state to people I love in the moment. I technically could speak but trying to do so and act like my usual social self would typically bring on a panic attack. So I like to keep one learned-off phrase handy to use so my friends don't overreact when I need to go... <insert phrase we're all ok with for whatever we want to call the curious state it's very helpful and restorative for me to go into at those times>.
I think my point is, it may not work to just take words away that people are using to communicate useful stuff to the people around them. If people make a song and dance about it on the internet and that irritates people it's a different story. And if they steer awareness away from people in more need of care and awareness that's a different story again. But having your words slip away for a brief holiday from your brain can still be a weird and scary experience for lots of people and for those around them. I once had a bout of low blood pressure and partially lost my vision and had to tell my boss at work so I could go home. Should I have been more careful in that moment to avoid the word "blind" because some people are permanently blind whereas I was only temporarily so? Does it not still make sense to say that one is temporarily a bit nonverbal? If anything those experiences give me a window of appreciation into "woah I wonder if that's something like how some people feel all the time?"
Maybe you or anyone else can suggest other words we can use? Maybe you'd be on for helping us relatively functional humans with occasional minor-by-comparison glitches find our language so that we don't take it from where it's more needed but still have our own communicative tools?
Great point! At the end of the day language is a tool and something that evolves. I fail to see the practical use of splitting hairs to this degree. I have ADHD, am I neurodivergent enough to use such-and-such word? What actually changes if I do or don't?
Amazing article, completely agree as a an autistic person with lower levels of support needs. Also love Rosie Jones!
prettyweirdg0rl on tiktok had this excellent podcast episode about disability content and the watering down of what it's like to have adhd - how people draw individual characteristics of adhd they may relate to and make it into this cute quirky thing as opposed to a very complex learning disability. people who say things like "neurodivergence is my superpower" etc are saying that to distance themselves from people whom it is not a "superpower" but something that excludes them from having certain aspects of a safe public life
I’ve begun to use nonspeaking instead of nonverbal. I’m autistic and sometimes cannot speak but nonverbal in its original sense doesn’t fit, and nonverbal in the Left meme sense doesn’t fit. Not being able to legibly communicate my needs is scary, and the nonverbal memes act like it’s a haha quirky thing. Curious what your brother’s relationship to communication/fear is. Thank you for this wonderful essay. A similar thing has been happening with people calling headaches migraines; I now name specifically what the pain is doing to me instead of “I have a migraine” because migraines are no longer taken seriously as legitimately debilitating
this is so so important !! i’ve written about the recent rise in the misuse of phrases to do with mental health + disability but wasn’t sure how to approach this term because i don’t have personal experience with it. you’ve explained things so clearly. i wish everyone could read this
Me when I write an article arrogantly assuming I know more about other people than they do themselves. Me when I don’t understand some people really ARE interoceptive enough to understand they’re feeing a certain way, like the feeling you cannot muster up enough energy or mental power to speak and thus being in a state of “being nonverbal”, even though they don’t meet the strictest clinical definition. Me when I have a severe lack of empathy and insight or perhaps am using this as a sort of power trip for more nefarious reasons stemming from my psyche. Me when this article is a load of bs.
low level autistic here. really great read ✨🩷
Nonverbal is a synonym of quiet though. When someone goes quiet and they are not using words they are literally being nonverbal.
Wrong
👍
amazing post . very interesting and interrogating as someone who is new to learning about disability justice
Thank you for writing this very needed piece. You’ve put to writing some things I’ve been struggled to say in real life and I look forward to bringing up the points you mentioned here when discussing these topics with others.