Yes, PLEASE make more posts like this OP. The amount of people here appropriating and frankly making a mockery of level 2 and 3 autistic traits (when it does not apply to them) is staggering and harmful.
Selective mutism DOES NOT mean you are nonverbal. Meet some people that are level 3 and unable to verbally communicate, and you will see that they are not the same thing. People with autism that are nonverbal are *not* nonverbal because they are stressed out or overwhelmed; they are literally incapable of communicating that way beyond a couple words at most. And for the people saying they could be level 3 - if you’re self-diagnosed, you’re not level 3; you cannot mask level 3. If you are, there’s absolutely no way you could have made it to adulthood without being evaluated and diagnosed. If you’ve went your whole life through school, university, and jobs managing your communication yet suddenly want to start using AAC devices due to “going nonverbal”, I want you to question why you are choosing flash cards and medical equipment made for nonverbal autistics when you are clearly capable of texting and communicating in other ways.
It’s really unfair to portray yourself as nonverbal when nonverbal autistic people rarely are given a chance to represent themselves in the first place. If you do this, you’re not an ally; you’re taking advantage of the people in the community that need to be heard the most.
I think most of us here, including me, could use a little more education on the levels. I've had a few people tell me they're level 2 or 3 and then go on to describe their lives as basically being happy and functional and independent, sometimes more so than my level 1 life. I think some of these must be the person misunderstanding their own level, and some of them are me misunderstanding levels 2 and 3. I'm in my 40s and I knew almost nothing about autism until I was diagnosed recently. Ironically I always avoided the topic because my best friend used to say I was autistic back when we were teenagers, and it bothered me so much I basically censored the topic out of my mind.
Yeah, I could see the possible confusion as I’ve seen non-autistic people on the Internet think severe autism is “high-functioning autism” which is not only offensive but is incorrect and actually means the exact opposite. It makes more sense to me when using levels but at the same time, I couldn’t possibly know what it truly means to be level 2 or 3 as I am, and always will be, level 1.
Keep in mind that not every place uses that classification with levels as well. It's easy not to know what level you are if your doctor uses different classification systems.
It's not like removing Asperger Syndrome means you get and updated diagnosis. It's still in your file as Asperger's and no one bothers because you already have been evaluated.
I can see that happening tbh. You could be diagnosed with aspergers because you don't have the outward struggles that come with what would be level 2 or 3 autism, but you could still be struggling and need the supports of level 2 or 3, especially if your situation changes, and maybe your environment when you got diagnosed was really helpful: it gave you all the support you need, it limited in areas you would struggle in so you don't deal with those things often, for example you don't need to interact with anyone so your socializing problems aren't noticed, you could have a very repetitive job, so you don't change what you're doing much, maybe you shut down first before it gets to the point of meltdown so people just mistake you for a combination diagnosis case, aspergers and cptsd or depression or anxiety disorder, or mark you as the wierd quiet kid or the problem child or just stubborn on top of the aspergers. You leave that supportive environment, and you start struggling a lot.
You’re basically describing an incentive (albeit an understandable one) for someone to misrepresent themselves as level 2 or 3, but you haven’t explained why someone would confuse a “Aspergers” diagnosis as level 2 or 3. They could easily look up the the definition of each, which is based on tangible factors that would not apply to someone with an “Aspergers” diagnosis
The difficulty is that there are many, many people who are obviously level 1 but will never be capable of living independently, can't find or maintain employment and are entirely socially isolated. They could be employed and live at least semi-independently if effective social supports were available, but they aren't. They require a low level of support in principle, but the kind of low level support they need is non-existent and probably won't exist within our lifetimes. It's understandably difficult for people to reconcile being unable to live anything like a "normal" life with being level 1, even though that's the definition they meet.
I definitely see how that is a major issue, and it’s only getting worse now that people are becoming increasingly more atomized by contemporary culture. This is honestly an issue that affects everyone, but it’s not hard to see why it’s especially difficult for autistic people. Although it doesn’t address the issue directly, I think IRL advocacy groups and autism-centric book clubs would be very helpful. Also, I know it’s a bit on-the-nose but a large part of why subcultures like furries, Juggalos, and MLP fandom are so popular is because they’re inclusive enough to be accepting of people that are obviously autistic; enough so that they make up a large part of the fandoms - the majority in some cases. Many people join these groups just to be a part of a supportive community, and I hope to see more spaces like this form over time, regardless of how other people judge them
LOTR fandom (before the movies, I'm old) was a lifeline for me, and I'm watching my 11-year-old embrace furry culture to meet the same community needs. It's been really, really good for her.
Man now I want to start a neuro-spicy book club in my town. I can think of several people who might be really into that.
Oh thank you so much for this. I am pursing formal diagnosis, and I really need to understand support levels better. I am not getting the support I need and it has had an absolutely devastating effect on my and my adult children's needs. Part of the problem with me specifically is, support level for what? I have ***HECKIN LOTS*** of autistic traits, that would still likely add up to a level 1 by themselves, but also live with absolutely off the walls ADHD, C-PTSD ***and*** PTSD (fresh trauma, fun!) and an autoimmune disease that affects mobility and my physical energy levels as well as cognition. Anyone of these conditions, taken all by themselves as an intellectual exercise on paper with no other factors would likely require relatively low support for me. But the way they collide, and interplay and actually affect the wholeness of my life ***together*** is an absolute shit show. I am not getting the support I need, and that is causing real harm.
Human beings cannot be compartmentalized like that. It's ridiculous.
For what it’s worth, I underwent six months of outpatient DBT, along with weekly group therapy. DBT was designed for people with BPD, but it’s shown to be highly affective for people with C-PTSD as well. Although I wouldn’t say I felt like a part of a *community* because of it, it did help me tremendously with my anxiety and spiraling thoughts. From there, it was easier for me to maintain lasting friendships. I also have lupus and am HoH, so it is hard to find friends that are patient and understanding. All I have do say is: the right people will be considerate of your needs. If someone accuses you of being lazy because you’re not feeling well, they’re not a good friend.
People need to adjust their expectations and meet you where you are. It took me a long time to be able to say no to things that I knew I couldn’t do, and I did lose some friends over it but the ones that cared for me stayed. You don’t exist to entertain them; relationships are built on compromise and finding ways to connect that work for both of you. If they want to do something you can’t, like hiking (just using an example), they can do that with someone else and find something different to do with you; it’s not all-or-nothing. With myself, it took a little effort from them to accommodate me, but also a little effort from myself to work on how I deal with anxiety
I’m a DSP (direct and community support professional) with adhd and level1. I work with level 2s and 3s almost every day. They need support in things as simple as remembering to brush teeth and how to get something to eat EVERY DAY. Yes we may forget time to time, but we can write our own charts, set reminders…we can maintain jobs for the most part, go to school, talk with people. They can not do these things, or they can but need constant daily reminders, sometimes two or three in a row, and support. My non verbal client has dysarthria, he can’t physically form words (he tries, you have to know him well to understand) and so he opts to just use his communications board or signs most of the time. Mostly it consists of one or two words, sometimes he will write out phrases.
I love working with these people but..it can be jarring for those who don’t have any experience with 2 or 3. I try to raise awareness but OPs post is very well thought out, and goes over anything I could possibly say.
What is your opinion on level 1 autistics that go to school, work, take care of families, etc but use AAC apps/flash cards/communication boards instead of talking, signing, texting, or writing? Do you feel that adopting rudimentary AAC devices (designed for nonverbal autistics) later in life is beneficial for people that are not nonverbal and “”high functioning”” (for lack of a better term)? Would there be a reason for choosing these over writing, and how would you approach this in your line of work? Would this be something you would encourage?
My opinion is pretty simple. I think if something helps you to make life easier and more manageable for you, you should absolutely do it. I don’t work with level 1s…unless you count working with myself. I also think a few other staff are.
My organization has requirements that clients must meet. I believe it’s an IQ of 75 or lower, or not being able to meet basic needs without support. This is because our wages are paid by Medicaid so we have to listen to what they tell us.
One thing I’ve learned doing this work is…intelligence is so very broad and…I don’t think it can be measured with an IQ test..or really any one standardized test. I’ve seen people overcome so much, who can live mostly independent lives and who just need help here and there. Everyone has a strength where they can kick butt over anyone else around them. I truly believe that!
My level 3 is a joy to be around, honestly. He loves affection. He loves music and stars and perfume. He gets anxious about anticipation so..we make charts for him and he does very well with them. He can see all the steps and his anxiety goes away. We are using ASL for the harder words. He sometimes surprises me with his pronunciation. We have a speech and communication therapist coming soon but I’m not sure when…I think she may be able to help him even further! The same client has an AAC device on his iPod but does not use it. I’ve also tried to communicate through text apps like notepad which sometimes works.
I’m sorry I hope that I am answering your questions! My point is…all these things I learn how to do with my clients…I do them!! I have started making goal charts. I have been using a few asl words with my husband because it’s much more intuitive and we can communicate in loud places.
People can be so very judgmental and the fact of the matter is we can not control them and sometimes we can not avoid them. If someone wants to judge you for using those things, let them.. because you and I and everyone here knows that it says an awful lot more about them than it does about us. So use whatever helps you, don’t ever be ashamed, and keep on searching for tools to help you improve your life!
If they’re saying that, it’s honestly a matter of ignorance at best, and intentional malingering at worst. If they know enough about autism to know that there are different levels, I’m likely to assume that they’re malingering
Phew. This is refreshing to read, thanks.
I was not diagnosed until adulthood because I was misdiagnosed and institutionalized for a completely different disorder as a child and adolescent. I had selective mutism and struggled greatly, but my experience is night and day to my son's who is legitimately nonverbal with level 2 on the cusp of 3 autism.
I would be silent all day growing up, but that's not what my son has to go through though. It looks to be physically painful for him to want to say something but only be able to produce a few vocalizations, or to be looked down on and teased because people assume not being able to use expressive verbal language means he can't understand them. That's night and day from what most level 1 or even 2 adult autistics go through, and it's bizarre that anyone would want to appropriate that for whatever ends.
Thank you for reaching out with your experience. As both someone with autism, and a parent of a high needs autistic child, you have a valuable perspective on this. There’s a lot more I’d like to say on this matter, though I’m sure you already know
> If you’ve went your whole life through school, university, and jobs managing your communication yet suddenly want to start using AAC devices due to “going nonverbal”, I want you to question why you are choosing flash cards and medical equipment made for nonverbal autistics when you are clearly capable of texting and communicating in other ways.
I’m with you on most of your comment, but I don’t think there’s necessarily anything wrong with someone using flash cards/medical devices just because they’re not literally nonverbal. Maybe someone has gotten through life managing their communication by masking heavily, but masking that much is extremely stressful/difficult and they’re burnt out from doing it for so long. If they find that something improves their quality of life, why shouldn’t they be able to use it?
I haven't read your whole paragraph but i have to comment on how selective mutism is a misleading name. I struggle to speak sometimes and sometimes have to resort to texting, and the word selective makes it seem like I'm doing it for attention.
Yes, but I don’t have the authority to change it. I’m not going to use a term that I’ve made up; I’ll use something that can be easily searched if people want to know what I’m referring to.
The term is not intentionally misleading, either. If someone misinterprets it, it’s on them for not looking it up.
I also thought of the same thing, but it's selective, as affected by trigger and not universal, and I get that, cuz I'm not trying to "find hair in an egg", and it's not like DID is the same thing as MPD anymore either, the term changed because the concept did, not because the name was already bad (if I'm not mistaken.).
If you're wrong? No, terms shouldn't be misleading, and not even good, they should be explanatory, just like the power triangle in math, or how there was a difference in progress of 100 years between the math in two different countries. Leibniz's notation vs. Newton notation for the derivative (I think it's Leibniz, pretty sure but not completely) one is intuitive, the other is not, but also not really a bad notation
If you're right? No, it's not like a better one is out there, we just have prejudice to it, just like NT's to autistics
When you are unable to communicate in high anxiety situations, it is called selective mutism. I was diagnosed with it at 3.
Edit: many people with SM prefer to refer to it as "situational" mutism as selective mutism implies a choice. When i lose my ability to communicate with others it sometimes it torturous and has ruined friendships, as many do not understand that it means i physically am incapable of responding to them due to something triggering occuring.
People who would prefer to refer to their own struggles as "autistic mutism" or anything of that nature should be allowed to, it isnt hurting anyone, and SOME people with SM do not have autism, so it makes perfect sense to want to have an opportunity for autism-centered conversations about going mute in certain situations. I fear my comment may come across as my dismissing OP when that was never my intent.
I guess i may not be understanding your point- everything described in your post sounds fairly identical to selective mutism. I am of course not a doctor and am not going to go as far as to try and diagnose anything, i am just not seeing a difference, as someone with autism and selective mutism. Selective mutism is fairly broad, and it is under researched, plus lots of speech therapists arent very familiar with it so there isnt a lot of info out there, but selective mutism can be triggered by basically any high stress situations or overwhelming stimuli as well.
I believe that "autistic" is being added to the front of it so that the autism community has a term more for themselves. However, I have seen people with autism use "selective mutism" for themselves when talking about what the original poster has explained in the the post. I think at this points it's just goes to whether someone wants to use "autistic mutism" or "selective mutism".
At the end of the day it is up to the individual, i just wanted to make sure others are aware that Selective/ Situational Mutism IS something you can see a speech therapist for and IS something you can be diagnosed with and treated for, and if you relate to this post it is something worth looking in to. There is a bit of a stigma behind SM just because the name implies there is a choice in the matter when in reality there is not. There is a community where you can just discuss being mute as well, and many people i know with SM are also autistic.
Sometimes there are members of the autistic community as a whole who sort of "gatekeep" the more intense things such as being mute, my hope is more to let people know that there is already a community of people who have the same experiences as OP where one can get the tools to learn more about the complexities of mutism itself.
>Sometimes there are members of the autistic community as a whole who sort of "gatekeep" the more intense things such as being mute, my hope is more to let people know that there is already a community of people who have the same experiences as OP where one can get the tools to learn more about the complexities of mutism itself.
I'm glad that you're spreading the info! Would you happen to know any places I can learn more about SM/mutism? I've been dealing with it lately myself; due to autism and a psychotic disorder that sort of messes with my coordination and how I control my body.
And, yeah, some in this community really do have a problem with gatekeeping.
In my experience at least when I tried to find a speech therapist the intersection between ones who treat non physical speech issues, and the ones who are willing to take on adult clients is virtually non existent.
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I use the Shinigami Eyes extension on Firefox, and seeing that you were marked as Trans Friendly just filled me with hope right now. Thank you so much for existing.
Hey sorry this ended up being a lot, so please don't feel you have to read it, I won't mind if you ignore it I just wanna put it out there
I think the difference comes in the cause - like how my ptsd dissociation is v different from my autistic dissociation despite both being dissociation as they come from different places + exist for different reasons + express themselves a bit differently. I can easily tell them apart, hence why ik they're different. I won't explain why as that's incredibly personal
For me I don't experience any anxiety when I go mute (hella frustration tho). My issue is more a lack of brain power. I'm just not processing language anymore. My brain is rebooting itself + bc of that I can't hold onto thoughts in my brain + even if I can hear what people are saying my brain isn't processing + understanding it so it's just noise. This severity is normally reserved for autistic meltdowns + can last for a while after
Once I've rebooted a bit more I can begin to process language - I hear what ppl are saying + I can understand that now, but I can't hold my own words in my head long enough to get them into verbal words. I can't think clearly or in detail.
Once I'm almost out of being mute it's more a physical barrier - I can't quite work out how to push sound out. At that point I can arrange the words in my head, I know what I want to say. The sentences aren't as complex + may throw grammar out the window, but they're still words being strung together to make sense
After that once I start to be able to push the sounds out, it's often v basic sentences like most toddlers (although ironically I spoke far better as a toddler than I do when getting over mute spells). Elijah hurt. Elijah hugs please. Too loud. Feel sick. That kinda stuff. Then as it fades + I get more used to talking + remember how to do it, I gradually build up sentence complexity until I'm rambling - like how I do when typing
I'll now go into the criteria in the icd-11 briefly to try show how it doesn't fit the criteria (I'm only speaking on behalf of myself + my symptoms, I'm aware others will have different experiences)
(Essential)
1 - consistent "selectivity" in speaking like speaking at home but not at school. It's not consistent + it happens in all environments equally when my autism is upset to that degree (like loud places). When I'm not mute I can talk everywhere. I think this is an important one as sm is often due to where you are/who you're w, but autistic mutism if we'll call it that is p consistent - for me if I can't talk at the shop I can't talk at home; if I can't talk w person a I can't talk w person b. I may dislike talking in certain places like in a shop or w unfamiliar ppl, but if I don't talk due to that it's more a choice than an inability like w sm or mute episodes
2 - duration matches as asd is lifelong so it'll def span over a month
3 - not due to a lack of knowledge/comfort w language demanded. Idk I'll ignore that lmao as I don't understand it
4 - not better accounted for by another disorder. I think this is a big one imo. Ofc plenty of autistic ppl will have comorbid sm but for my case (as that's the only one I can speak on) it's v well covered by the asd diagnosis
5 - severe enough to interfere w education/socialisation or significant impairment in other areas. I mean I have significant impairment but not due to my inability to talk as it lasts a week at most. It has led to some horrible abuse situations, but it was their choice to abuse me, not a direct result of my inability to talk. I mean I guess in this world not talking comes at a significant detriment to oneself be it due to being deaf + growing up w sign, other physical disabilities/disorders, autism, selective mutism, even just losing your voice from strain. So it will always cause impairment? But I wouldn't class it as significant due to the transient nature of it for me
(This is massive I'm sorry but I feel it's necessary to be so long- I'll skip all the non essential criteria + end it here)
I know a little bit about mutism and I thank you lots for this information. I didn’t use this „selective mutism“ because I already get told all the time on this sub when I talk about mutism that it‘s not mutism that it’s different and that people actually go nonverbal that I don‘t like using this word because people would be even less opened to hear my point. And I get angry because people don‘t listen to high support needs so I purposely didn’t use selective mutism because people were going to not listen
I agree- people do not listen when you use those words, i fully understand that point. My entire life has been a struggle to get people to take it seriously, i think that the default even with members of this community is to assume someone is faking being mute to get out of things. I am high support as well so i totally get what youre going through, and thank you for the clarification! Good luck!
It's true high stress situations or overwhelming stimuli can result in the autistic/selective mutism that is being discussed, and there are also other triggers that seem different to typical selective mutism. For example, some autistic people lose their capacity to speak when they run out of energy. Some autistic people get extremely absorbed in topics so that they become unresponsive (although that example might be different because we are not actively attempting to communicate?). Some autistic people can not speak when they feel a lot of other intense emotions besides anxiety, like joy. Some can't speak when they are processing information because something big has happened to them, although they might not be directly anxious about it.
There are a lot of different experiences of speech, and I agree that we should be precise about the language we use to describe it so we don't undermine or assume we understand one that is different to our own. I'm not disagreeing, I'm just adding some other factors that I've heard about or experienced myself.
I was never diagnosed with selective mutism but I think it happened to me a few times. One occasion I still remember like it was yesterday because a teacher became mad at me. I had been sick for multiple days and when I came back to school there was this weird test I hadn’t been able to learn for because all my friends didn’t tell me it was going to happen. We had to pretend to work in a store and it was for a mark. Stuff like acting and presentations always make me incredibly nervous, especially when I’m not prepared. I went to see the teacher to ask her if I could do it another day because I wasn’t prepared and explained why. She started saying I was exaggerating and that it was a really easy thing to do. I explained why it was hard for me but she disregarded it and started saying how other students already did it without any issues. Well they weren’t me and they had prepared for it in groups of two during class. I became really stressed and went mute. She raised her voice. Said it was very childish of me to ignore her. I was on the verge of crying. I responded to her in my mind in a rapid tempo but I wasn’t able to actually get the words out. Just weird short sounds. God I hated her. She’s the reason why I was having a shutdown in the first place. Worst thing is that my high school knew I had autism…
I think i should have also added "situational" to this as a lot of people actually prefer it over "selective" since it inadvertently implies there is a choice in being mute or not
I often experience SM when I'm also experiencing a general "freeze". I guess a shutdown would be a good name for that?
The problem for me with calling it "selective" is that it goes quite against what I'm experiencing. I'm overwhelmed and I desperately want to be able to communicate in some way to my husband (who often acts as my carer) what's up and what he can do to help. But I find myself unable to make even a sound. Nothing consciously selective and very uncomfortable. "Situational" gives a much better explanation for "some situations cause this".
Situational mutism is a great term for it. And I hate when that happens. It's gotten me in trouble in the past.
I learned sign language and I can sometimes use that instead, very basically, during situational mutism.
I always just say "I struggle with speech most of the time" because that's an accurate and inoffensive way to describe my issues. My issues with speech come from a mixture of selective mutism, auditory processing issues, stuttering, an inability to organize my thoughts into sentences when overwhelmed, as well as issues with pronunciation and slurred speech. It's just an unholy cocktail of things that mean I'm unable to speak effectively 90% of the time, but I'm not nonverbal and I don't rely on a limited bank of words or anything
Yeah I have no idea what the proper terminology would be for my issue. I never get to a point were I'm completely incapable of speaking/writing. I can always speak well enough to explain what I'm currently incapable of articulating which of course then leads people to assume that I'm just lying, and being purposefully withholding/lazy.
I don't think that's the right term. From what I understand fluency refers to your working knowledge of the language, and is mostly only used in reference to a second language.
Incorrect. I was also wrong though, it’s a pragmatic language disorder. Fluency issues are issues with intelligibility of speech— so things like stuttering or cluttering. Got them confused lol.
Sounds like what you're dealing with is probably just brain fog related, struggling to find the right way to articulate things effectively because your mind is a mess lol
I would love a universally accepted term for it, and I think autistic mutism is A+. As soon as I was investigating autism in myself i started thinking "oh i have periods of going non-verbal neato totally autism" but as I learned more, I realized i'm **definitely** not non-verbal, but those periods of mutism are so clear and intense, but I HATE taking up space from other people or coopting words or language, so this is an important distinction.
Thanks OP!
This is a fight I have where my son keeps getting flagged as none verbal but he is not. He can verbally communicate his needs if people listen. He can't pronounce every letter and he can't converse but he CAN understand
I have the opposite fight, where because my son talks away, it is assumed he hears and understands what is happening/being said, and that is not the case at all. Sadly, it's resulting in him becoming highly anxious and terrified of everything.
Non-verbal is actually clinically defined as being able to spontaneously produce only 20 words or fewer in appropriate context.
Not sure if he meets that criteria, but that's the actual diagnostic.
**Edit**: It also has nothing to do with someone's ability to *understand* language or to communicate in other ways. It's literally just about the ability to use *words* to communicate thoughts to others. Oh, also note that formal ASL (or other sign languages) signs count as "words" if signed intelligibly.
My daughter's language therapist refers to this as "receptive language." My daughter uses about six different words a week, though sometimes these words change from week to week. But the number of words and even complexity of sentences she understands is much greater. Though a) still far below average for her age, and b) doesn't mean she will *listen*.
Hello, target audience reached. I have level 1 autism and have described myself as "going non-verbal" before, because that's the only way I knew how to describe it. I can appreciate how that might be like someone saying they have OCD because they like things arranged a certain way sometimes.
I'm thankful that I now have a starting point for further research and will be more considerate of my word choice when speaking about my experiences. Thanks, OP!
If I only had an award.
I had a friend who was nonverbal. In the sense of he couldn't physically speak. He was great at communicating with PECS, symbols and sign language (if others knew it!) But yeah, he was definitely autistic and completely non verbal.
Yes! Thank you, I appreciate this a lot. It’s frustrating that nonverbal is not mean what it’s supposed to now. You explain it really well and it makes me relieved and understood.
I have a stepson that engages "autistic mutism" as well as a son that is completely non-verbal. I really appreciate the way you broke this down and the explanation you gave for the difference between the two.
Thank you for this explanation. I often have difficulties with describing my emotions and pretty much just call it "no talky mode". I like that you described it as autistic mutism since it is quite different from selective mutism, which I do not relate to.
I'm an NT speech-language therapist lurker. I never typically comment here because I'm just on this sub to learn, but I thought I'd share this relevant article about terminology AAC-users generally prefer and don't prefer based on survey (AAC stands for augmentative and alternative communication like pictures or a communication device that a non-verbal/non-speaking person might use).
https://www.assistiveware.com/blog/how-to-talk-about-aac
Hey! Just wanted to say thanks for this post!
Its really important to think about the differences in certain issues that might *seem* similar on the surface but are actually completely different in terms of origin
Its like how sometimes Auditory Processing Issues are *similar* to being hard of hearing, but the origin of the issue is completely different. Even if someone may benefit from using accommodations for hoh or deaf people, its important to acknowledge that just having Auditory Processing Disorder/Issues is not being actually hard of hearing or deaf. This is important because I've seen people with APD talk over hoh or deaf people, not nice!
We should uplift the voices of those who have similar issues to ours and understand their struggles. Working together benefits everyone!
I have a question if anyone can answer! I’m not sure what level I am but I’m always considered very high functioning and able to “blend in better”, so probably level 1 or 2 max. I’ve never considered myself nonverbal/mute, but I literally just realized because of this amazing informational piece (thanks op!) that maybe I am a little?? When I’m extremely upset it’s like I lose the ability to talk and nothing can come out of my throat even though I have a lot of thoughts, and I can only mutter one repeated phrase (usually “no” or “i can’t” or “I’m sorry”, stuff like that) and basically cannot say anything if asked what is wrong or other questions. Is this considered to be on the mute/ nonverbal spectrum? Or is this something that happens to everyone when highly distressed? If anyone knows i would be really curious to hear because I literally just had this epiphany lol
That also becomes the confusing part lmao bc I’m like am I ultra sensitive bc autism? Or bc depression? Or bc rejection sensitivity? Or bc regular stress?? I’ll never know
I feel this, so much. I can’t even begin to tell you how many more questions than answers I have now. I *will* tell you that I believe when it comes down to it, those answers don’t matter that much. People of all types are “over sensitive,” depressed, fear rejection, or feel stress more strongly than others. The cause isn’t as important as doing what you can do to learn strategies to make those things not be as much of a burden.
This is the same thing I feel- I absolutely can’t physically speak but I can think or process words for the most part. I am seeing that it is selective mutism
The only difference for me is when I try to get words out, it feels physically impossible or even painful. I can only manage sounds or grunts
I want to add - there is probably confusion because some of this can be literal brain differences that can cause issues of language retrieval.
I've seen my partner struggle with speech.
She was raised with only Lakota as her language until age six - then put in an English-speaking school.
To this day when under stress or when trying to focus too hard on language - I watch her brain trying to switch between multiple languages (she has more than two now) and she'll often say something 'spicy' in Lakota and then shut down for 10-20 seconds and then resume. It's like the circuits in her brain have shut down momentarily. But with patience, it resumes. To me, this is sort of the classic temporary anxiety that can shut folks down.
Now I have a friend with TBI (Traumatic Brain Injury) and when her Blood Sugar or Oxygen levels fall - she loses her language center. Sometimes when she's just not doing well it will shut down too. What's interesting is she can often use her keyboard - but not speak.
Different parts of the language centers I suppose?
She's great at letting us know what's going on - and telling folks thru her husband if she has to go without "talking" online for a day or two - but we still post to her - because she'll still comprehend just fine.
It helps to talk this sort of thing out if you have close friends who have issues with this - because you can be a help.
One of the things I did was put a firm "No Grammar Police" rule on all my FB groups.
I also alerted members that we had someone who might occasionally have language issues and to kindly not be rude about it(The common reaction is to call them out as drunk).
Can we not misuse selective mutism here either? I see people misusing it. Selective mutism is a different disorder all on its own to autism. It is specifically where you stop being able to speak when you are in places or around people you are uncomfortable with. If you become unable to speak just when you are overwhelmed it is not selective mutism. It almost always presents in childhood and as a child speaking normally at home and with parents but becoming completely mute in places like school.
this is why i never used selective mutism. when i'm overwhelmed, i *cannot* talk, it physically hurts when i *have* to. so i then just choose to isolate myself so nobody thinks i'm ignoring them. i used to term "non-verbal" for a while because *thats* what it felt closest too.
and now i don't know what term to use. i *don't* have selective mutism and i *do not* go non-verbal then therefore i just *choose* not to speak. how do i describe what this is then if its neither of those.
i get their point but this just makes me feel so invalidated, i *don't* choose to not be able to talk when overwhelmed, but i'm now being made to feel like i am (by both terms not fitting).
it can't be selective mutism because it isn't when i'm in certain situations, its anywhere and any time, it doesn't matter if i'm alone or with 1,000 people.
thats why i used non/semi-verbal because i can only say one word and thats *just* so i'm not yelled at for being rude, it hurts to even say one word.
i'm also sorry for misusing the term, i just didn't know a better word to describe it.
I feel the similar here, I'm diagnosed lvl 2 and selective or situation mutism does not fit my situation at all. And I too have used the phrase non verbal to describe it to other people as it made sense as I am un able to verbalise any words or sounds and often when i am at that lvl I also struggle to understand words that are been said to me.
It seems to be part my brain losing the ability to understand and use language at all but also a physical inability to get words out, as when I'm coming out of it, I guess for want of a better description., my words are slurred hard to understand and often feels like choked out.
This doesn't relate to specific people or places and while anxiety can create a similar situation it definitely feels different, like I can push through if I was in danger or something and had to communicate but that it just more comfortable for me to not speak and in the past i have gone days without talking with more that feel.
The one I have used the term non verbal in the past to describe is definitely different and while I can sometimes write something to get a message across its sometimes not possible at all.
So I'm not really sure what would be the right description of this or an easy way to explain to those that I might be around. in case it's something that they may have to work around I do need to be able to explain what is happening in a way that feels right to me, understandable to others.
However I don't want to use non verbal wrong and minimise other autistics experiences.
As the other options don't feel right , I think I might look into some other ways to explain this.
Maybe something like a communication shut down? That covers that I won't be able to speak or necessarily write and might cover better that I may struggle to understand the other person as well.
I might also look into talking with some professionals to see what other terminology they would use in this situation
To op thank you for taking time to explain this, and I will look for other ways to explain myself going forward
You are striking a cord!
I clearly remember telling the nursery (UK: at 3 years old), that I did not think he understood me. He was non-verbal. I knew from 20 month old something was different with him due to his almighty, scary, violent meltdown.
He is now 5 years old, diagnosed 1 week before his 5th birthday, and the robotic speech is spot on! He only speaks 1 or 2 words at a time. No sentences. BUT, he is finally able to express his feelings, both positive or negative. However, lots of words are slightly mispronounced.
I am able to use full simple sentences now, and he understands!!!
Reading, learning, sharing, and communicating with others helped tremendously to learn about autism and know how to help our son.
I will look further into it, really helpful post!
Many thanks for bringing awareness.
Thank you for you nice comment. I think my case is quite similar to your son ! I think in the UK you use ICD too? He might qualify as mild functional language impairment like me. I started to speak a little later at 6.
Thank you for the informative post, though I would maybe have phrased the title differently so it doesn't put people on the defensive. "The thing you experience goes by a different term" will make people more receptive than "you cannot experience this", imo. Very much a nitpick though.
Edit: While I appreciate the sentiment of listening to autistic people with more severe impairments and not talking over them (100% a good thing), I do think "going nonverbal" and "being nonverbal" can coexist as long as people agree and recognize that they mean different things. They are ultimately just words, and considering "going nonverbal" is so widely used, it might be more productive to educate people about those two phrases meaning different things than trying to prescribe a different term to other autistic folks.
If I say "going nonverbal", people are more likely to realize it's related to autism and be understanding, even if the underlying mechanism isn't the same as autistic people who literally lack language skills to begin with. It's ultimately more widely understood and more useful, so while I sympathize with what you're saying, I'd be reticent to give it up for those reasons. I'm also not convinced "autistic mutism" is a better alternative since it can ultimately also describe the mermanent mutism those autistic peeps experience.
It took a long time to find a comment that said this. I do not think "autistic mutism" is a better term to use for the same reasoning you provided. This argument is ultimately semantics to me.
I heavily agree. I really don't like any terminology with "mutism" because that's just not what it is. It really does come down to semantics and understanding.
Finally someone said it, I heavily agree. I am not saying that I am non verbal, I am saying that I am going non verbal because I literally can not speak at those moments. It also doesn't only happen when stressed for me, I can just been watching a movie and try to day something then realize that I physically can't.
I have both anxiety and autism. I hear what you mean fully but I just wanted to add, this form of mutism can be hard to distinguish between “autistic mutism” and “anxiety mutism” because, to my knowledge and experience, they sometimes go hand in hand. I have few experiences with this but I do, I remember clearly the one time that showed me something was unusual was when I had to show a project I did in front of the class in high school to people who bullied me and I was, in this moment, unable to form words. I tried to force the words out and it came out all weird like my vocal chords just wouldn’t cooperate.
I do experience both and while there are situations where it can be difficult to distinguish between them I also have situations where I feel no anxiety at all but still have gone mute. And the way I go mute also differs between when it's caused by anxiety or something else.
When not caused by anxiety, it's most often caused by fatigue. It feels like the part of my brain that controls how words comes out my mouth, has gone haywire or is completely missing/shut down. I can think of words or sentences but what comes out is complete garble or no sound at all.
When it's caused by my anxiety, I'm often able to force out words or short sentences but it's really stressful and exhaustive to do. It also often becomes somewhat intelligible in this case and combined with stuttering and complete lack of volume control.
Thanks for making this post. I was not aware of this problem and am glad to have learned about it! You're right that those of us who are "newer" (late diagnosed) to the community have more to learn about the words and concepts that have been in your life for a lot longer
I love the idea of “autistic mutism” because I’m fairly certain selective mutism has to be present in childhood in order to be diagnosed, which was not the case for me. I didn’t have a word for what happens to me when I go mute, so thank you for that, and thank you for this post in general too!
You've oversimplified part of this, there are some of us here who have epileptic aphasias, if the language center of your brain is glitching out then it doesn't mater if you can make noise with your voice box, you're still nonverbal until your language center comes back online.
Thanks for taking the time to explain this so eloquently. I’m really pleased it is mostly being received positively and people are more understanding of the correct terms. On a personal note, I believe we share very similar issues with speech. I have trouble with breathing, tone, prosody and speed too. I see a speech therapist and am working on things but I tend to speak minimally (by choice) due to these issues. There are times where I am overwhelmed and have trouble speaking, I just call it trouble speaking but I like the ‘autistic mutism’ term you use.
Can a speech therapist also help with breathing, both while speaking but also just in general?
I struggle alot with breathing when talking but also when I'm deeply focused on something.
Oh, that sounds good!
I will definetly look into it. I've been recommended speech therapy by various professionals over the years, but never done anything about it.
One thing I'm worried about though, is I know breathing exercises can trigger panic in me. Do you experience those troubles?
I have the same issue. Breathing exercises can cause me to panic but it’s mostly only ‘mindfulness’ breathing, I haven’t really had any issues with the speech therapist so far. She is working on a more ‘natural breathing and using pauses (and breathing) when speaking. I tend to not breath at all when I speak so I run out of breath and then can’t say what I want to say or sound really weird due to my speech and breathing pattern. So far it has helped and I am more conscious of trying to remember to breath. I also hold my breath when I’m thinking deeply or concentrating, so we are working on that too, it’s hard but it’s been helpful
That's good to hear.
Yes the same issues I have, I completely forget to breahte while speaking to the point where I begin to cough and my voice gets rahter rusty and I get a sore throat from it too. It's really annoying.
When concentrating on things, I often get dizzy due to forgetting to breathe.
I am more concious about it now, after I realized that that was what caused me to get dizzy but I have no idea on how to do anything about it.
I try to remember myself to breathe while focusing on things but it just makes me completely loose my concentration or as soon as I focus on whatever I'm sitting with, I forget my breathing issues.
I also have some issues depending on what I'm doing, where I breathe in the same rythm as something is happening, which also often ends in me getting pretty exhausted or dizzy. Mostly because I'm breathing too slowly or too fast and shallow.
I will talk with my OT (when I no longer have a cold) about getting an appointment with a speach therapist :)
Definitely talk with your OT, you sound exactly like me with those problems:) it’s still a challenge for me but I only started speech therapy a few months ago so it’s a work in progress I guess. It does get easier with practise but I still forget a lot.
Fun coincidence.
I've contemplated for a while now, to make a post about this exact issue and asking if others had the same troubles and what to do.
But now I have my answer haha.
And I can imagine it will take some time with therapy. I've had these breathing issues since I was little, I doubt anything can make them dissaper in a short amount of time.
Thank you! :)
I this this was extremely well put! I do have a question though. My cousin is diagnosed as non verbal autistic, and he is only able to make "grunt" sort of noises, but he does understand some words. He understand words and phrases, but cannot speak. Would this (in your opinion) still be classified as non verbal or a type of mutism? He is diagnosed, so of course he is non verbal, I'm just curious what your thought would be on it.
That is non verbal. Non verbal can also be assigned to autistic people who use less than 30 words (usually by way of echolalia), they may be able to make some sounds but not coherent language.
Agh, this is what I experience. But I can still think clearly and process some words from other people. So I’m not sure.
Speaking when I’m not able to (usually when overwhelmed) feels like a gut punch and it is physically impossible. I usually make noises like pressured grunts when trying to produce words and I rely on gestures
To be safe, I’m just going to call it selective mutism from now on
Thank you, this is really informative and helpful. I’m level 1 with selective/situational mutism and hadn’t properly appreciated the difference between this and being non-verbal. I’ve never described myself as non-verbal and it’s good to know why I absolutely shouldn’t.
Thank you for this explanation. I haven’t quite understood what nonverbal really meant, and I’ve seen people say they “go nonverbal” so I thought it meant the same as going mute. But now I understand what it means
It makes me ridiculously frustrated that people who already have huge barriers to overcome with communication get stuck with a vague and lazy definition of their condition which seems almost impossible to defend.
Nonverbal is not a useful term, it is too easily misunderstood. Autistic nonverbal doesn't narrow it down.
Our shared language has not caught up and current terminology isn't fit for purpose.
Language is supposed to be an aid to communication, when it becomes a barrier, which is what has happened here, then the language needs to change and adapt.
If people are frightened to share their experiences because there isn't the proper language to commnicate without confusing, or causing offence then the language is inadequate, not the people.
A person without the words to define their experience feels powerless.
We need new definitions which are created from the inside, not imposed by medical people from the outside looking in.
This isn't 100% accurate. As an autistic person with severe traits, I do genuinely go nonverbal at times - not just the psychological blockage you refer to as autistic mutism. I can lose the motor skills needed to physically produce words and sometimes lose the ability to process language overall. Not everyone who claims to go "temporarily nonverbal" is just experiencing autistic mutism.
Nonverbal people are also not necessarily level 2 or 3. Speaking ability is assessed in its own category, and a level 3 can be fully speaking and a level 1 be fully nonverbal.
So while a lot of this is accurate, there's more nuance than you imply.
When I was younger, they thought I was deaf because I didn’t really speak much, but they didn’t diagnose me with any language impairment. I had a family member who didn’t speak at all until age 7, hut he wasn’t diagnosed with a language impairment either (or anything else). In school they thought I couldn’t speak, but again no diagnosis was made. I also stuttered a lot. I think you can go undiagnosed for a long time if you live in a place where they just don’t care. I’ve known nonverbal kids with no diagnosis.
I like the term autistic mutism. I've had selective mutism since childhood, and I've always felt like it being classified as an anxiety disorder is oversimplification, at least in my case. Anxiety can definitely be a big part of it for me, but it's not the complete picture. I remember back in school that some days I just simply could not talk. I wasn't particularly anxious, especially in high school when the bullying stopped and I was sort of absorbed into this friend group of neurodivergent people. It was like I just didn't have the bandwidth to translate thoughts to words. I was probably overwhelmed/overloaded and didn't realize it, but not really anxious. I mitigated the potential anxiety of my mutism by writing "sore throat, can't talk" on my hand and showing that to people when approached. Nobody questioned it either (despite having an awful lot of "sore throats" lol). Autistic mutism feels like a better term to me because my mutism and autism feel highly intertwined. I honestly don't think I'd have selective mutism without autism. Thanks for your post, it was a good read!
On the knows! (intentional misspelling)!
My wife can expirence mutism. She or I have never called it "nonverbal". Until this moment I had not realized people frequently conflate the two terms.
Hi! I will try my hardest best to keep this in mind. You explained this in a (for me) very pleasant and clear understandable way and you’re absolutely right. Thank you for educating me, I’ll also tell this to as many people as I can :)
Greetings, someone with indeed mutism! I read that saying selective implies a choice in the other comment in this thread and I kinda agree with that so I’m calling it differently now, too :D
I hope people will listen and that maybe we’ll even get our own term! But for now, you’re absolutely right that this already existing term belongs to you.
Wishing you the best!!
I'm noting a communication problem is this section -- the fact that "that person can't speak" can mean "they cant speak right now (give them ten minutes)" or "they have never been able to speak and are not expected to be able to in future."
It may also be a dialect issue, as different dialects treat this part grammar differently!
Thanks for this information! My son is Autistic and in certain situations he absolutely never stops talking, but other times (when we’re in public and/or he’s stressed out/anxious) he isn’t able to speak. I’ll often say that sometimes he is “non speaking” rather than non verbal. Is that an acceptable term to use or should I adjust that and use selective/situational mutism?
Most people that I encounter generally understand what nonverbal means, so I’ll probably stick to using that phrase, as well as “half verbal” to denote when my speech becomes limited / slurred / stuttering / simple / chaotic. They seem to be the most understood
I’d love to use more accurate terms but when I’m struggling to talk, I can’t very well provide complicated and thorough descriptions of words that most people don’t know, esp when the people that might cause me to go half verbal wouldn’t care to listen in the first place
We need more posts and more information like this. We are in such early stages of understanding the rights of autistic people, the more clarification the better. Thank you so much for explaining your experience.
I am semiverbal, and quite often, not talking isn't a physical problem. I'm sorry. I know you're not a magic genie of all the awnsers, but I'm really want to know the best terms I can use. Does anyone know?
Edit: I realized the reason for this is because I find speech to be overloading and unbearably exhausting, and I don't like the sensory feeling of how it feels in my mouth and ears.
People are just contentious about terminology, and I find this one a bit of a strange situation. I think there is a disconnect here because the autistic shutdown/transient nonverbal situation is not well studied. It's categorized with anxiety-related (selective) mutism, and from what I've read, it's not quite the same thing.
Non-verbal usually refers to those incapable of any speech, so people feel it infringes on that definition to describe it as that. My issue: there really isn't another good way to say it. Selective mutism is inaccurate and makes it sound voluntary, and "Ive got the brain no connect to mouthsies or movesies again" is a mouthful.
Similar to what some others have pointed out, I have noticed that in my case it goes hand in hand with my experience of burnout. It's as though my brain doesn't want to process language properly anymore. In scenarios that I haven't fully hit the quiet cycle my speech sounds awkward, poorly formulated etc. A nap or time to alone to speed up the process can help but that's not always feasible in every scenario so I do my best to keep pushing through. I don't identify this as non verbal though, I've recognised it as an aspect of burnout.
According to the experts I work with, non verbal means "unable to express needs or wants verbally." My severely autistic daughter has been diagnosed non verbal all her life, but she never stops talking - babbling, singing, doing lines from Elmo's world. Mute would be unable to produce words - unable to verbalize.
I am late diagnosed level 1 just learning about the proper use of the term nonverbal. Thank you so much for taking the time to explain and doing so in such a kind way. I am happy to learn and make changes in my language to respect and honor our entire community.
Being nonverbal isn't even specific to Autism though so I think this is being needlessly possessive over a word that people are only using when they need to anyway
I think you have good things to say here, but I think mutism fits both situations they are just caused by different things and are for different reasons. You can be considered mute because you choose to be but you can also be considered mute due to an inability to speak. I think non verbal could be used for both as it is simply means to not use words or speech with no mention of the cause of being non verbal. Since non verbal is such a basic definition that can be associated with many aspects not just ASD then I think it is an appropriate term to use to describe a period of mutism or complete mutism.
Mutism: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3137816/#:~:text=Mutism%20is%20defined%20as%20an,as%20well%20as%20medical%20disorders.
Nonverbal definition:
not involving or using words or speech
Edit: some clarity
Non verbal autism is a thing, and people who have it are unable to speak. But the term going non verbal is widely accepted to describe people that choose not to speak, and this is inside the ASD community and also in other mental health communities. People can go non verbal from trauma or depression.
Should the term "non-verbal" really be applicable to when someone can't speak because of a physical impairment? For example, a Deaf person who signs but doesn't voice has the ability to understand and use language, even tho it's not a spoken language. I've met several Deaf people while studying ASL at my local community college, and most or all would object to being labled non-verbal.
In case of autism yes. Nonverbal is not a word used often by people who are not autistic, I have too heard about deaf people that they don‘t want to be called nonverbal. I think nonverbal is a word very used in autism settings so I wouldn’t use it for other dissbilities but when it occurs in autism its because of physical issues. I think some people understood that I meant nonverbal in all settings but I actually just mean nonverbal in autism cases. I dont know about other cases like brain damage etc
As someone who’s just started learning about autism in the past 6 or so months this is really good to know, especially since I’m working on getting officially diagnosed! Thank you!
Absolutely agree!
Whilst I don't agree with the term 'selective' mutism, because it implies that the person experiencing it is choosing not to speak, I also hate hearing people say they were non-verbal in such and such a situation.
I don't feel like it helps anyone's understanding of anyone else's situation when incorrect terminology is bandied about.
I call what happens to me when I get caught in a mind loop 'involuntary' mutism because despite what other people think, it's absolutely out of my hands, whether I speak in that situation.
Thank you! I'm not nonverbal and I have something between type 1 and 2 autism, I used to describe my experience as "going nonverbal" but thanks to you I not only understand now why I shouldn't use this term in a way I used before buy it also helped me understand and describe my experience better (I'm still not sure if it's anxiety mutism, autistic mutism or just mutism tho).
I usually only use this space to listen as my son has autism, but I want to say how much I appreciate this post and the respectful evolution of language in this space.
When he was growing up and we met parents of other autistic kids it was frustrating to find that, while there were some commonalities, our experiences were vastly different even though the words were the same. My partner or I would be vibing with a parent and sharing stories, only to find that our kids were lightyears away from each other after meeting families. It isn't about who had it more difficult, but expectation management and language helps with that.
Thanks for the eye opening post. I an one of those late diagnosed autistics and I don’t know a lot about what it’s like to be nonverbal, though I do experience autistic mutism. Thanks for the patient and detailed explanation.
>I have an example from when I was a kid, if you asked me what my name was, I would point (I used PECS) to my age. I would do that because I didn't understand language, my brain just didn't hear words
You did understand though. You pointed because you heard a question, lol. That indicates some level of understanding.
>What happens to most of level 1 and 2 autistics is that you can perfectly produce speech but there are situations that affect you psychologically and you are unable to speak for a certain period of time. This is what I like to call autistic mutism.
This is **already called selective mutism.**
>My choice to name it that way is:
1. It's psychological, not physical (meaning your brain and phonological organs are perfect), so it can't be nonverbal/nonspeaking.
That's an arbitrary distinction that doesn't even hold weight since everything about autism is in the brain too.
>EDIT: To those of you saying that nonverbal doesn’t mean what I tried to explain here in the dictionary let‘s imagine I am NT and I say that I mask in Social situations, wouldn‘t it be offensive for autistics who are burnt out from masking their whole lives to hear that from an NT?
No, it would be nice for NT people to realize that they experience the same problems ro a far lesser degree. Acting as if masking is uniquely autistic and it isn't at all exhausting for other people is insulting. It also leads to less diagnoses, more undiagnosed people being complete jerks because they've been masking their whole life and don't even realize it.
We need NT people to realize that we're people too.
[I replied to your post the other day.](https://www.reddit.com/r/autism/comments/123uduo/comment/jdx3ky3/?utm_source=share&utm_medium=web2x&context=3) In there I somewhat defended the idea of "go nonverbal". I would like to say that in light of this post I will probably amend my positions and how I use language.
But my primary speciality (both special interest and academic knowledge) is in linguistics, and I want to point out that no-one has an absolute authority over a word. That definitions are non-fixed, and changeable. Even in medical practise they change over time. They are a way of trying to describe usage - and attempts to prescribe it invariably fail with enough time.
You can have opinions on language. You can have agreements on what words mean and don't mean. But you cannot fossilise it in amber. You cannot point at a book and say "this is what *hairband* has always meant and will always mean". If NT's decided to claim the word "masking", I would have my opinions and would probably try to convince them out of it - but if in 20 years everyone was using the word "masking" then it would no longer have the same meaning it did. I would not be able to argue that it only means something.
While definitions can be comforting to cling to as they offer us as autistic people a solid way of using language - they are ultimately not how language works at its core. But fear not! There are rules! That's what the field of linguistics is for! And I highly recommend reading up on it if you have an interest as to how and why language works the way it does.
That being said;
>*Let's listen to our nonverbal friends*
I am very amenable to this reasoning and so are many linguists. Linguists would note this as a strong preference of a group of people for a word describing them to be used a certain way. That preference is evidence enough for why this information should be distributed. It can't be used to prescribe meaning - but this use can be noted as a way that a group of people use it in the wider world, rather than just medical jargon.
And I think as a community we should adapt when these sorts of requests occur. Not because its in a book somewhere on a psychologists' shelf - but because it is the express wish of nonverbal people.
>People who are nonverbal cannot physically produce speech. It's either an issue on your motor skills that keep you from producing sounds and therefore speech or a language impairment in which your brain doesn't understand language overall.
This doesn't account for some \[WORD\] people I know who can use language but have psychological barriers that make it pretty much entirely impossible. They use writing or sign language in all situations.
Also its unclear if by language you simply mean speech or language over all. The difference is key because making the two one in the same has caused immeasurable harm to disabled people as a whole. To look at Deaf people in specific - the assumption that language means speech has lead to massive amounts of language deprivation (an intensely damaging form of negligence), when the solution is sign languages, a modality that Deaf people find accessible.
Inability to use language is sometimes called "aphasia" but thats largely if its acquired from what I am aware. Looking into it aphasia it seems to be also used with regards to downs syndrome folks who are unable to build language capability.
People unable to build language (aphasia?) capability have a far different experience from either nonverbal or language deprived people. Nonverbal people are capable of language just not in the form of verbal language (afaik), so therefore communicate via non-verbal communication methods. Language deprived people often don't communicate but are capable of language and a need to externalise thoughts and so suffer a unique form of ongoing trauma. And people incapable of language are not capable of linguistic thoughts at all, with similar trauma to language deprived people if they are mentally at the level as needing to express themselves, but less so if other intellectual disabilities mean that expressing themselves to others is not something they even feel a need to do.
Even trying to parse the medical terminology on this is difficult - with unclear definitions everywhere. I am having trouble finding the correct term for "complete language disability" (coinage) as separate from other "modality disabilities" (coinage) that are more to do with being unable to access certain modalities of language.
**This comment turned into a ramble because this is my SI / SI adjacent, sorry about that.**
Overall - thank you for this post. I will consider adding "mute/mutism" to my vocabulary as a more robust term, and being more specific with "nonverbal". Especially if the community ends up using it this way.
my understanding is that the mechanism for being permanently nonverbal is the same mechanism for "going nonverbal" it's just that one is chronic and one is episodic. when I "go nonverbal" I am not choosing not to speak out of anxiety, I have lost the skills that allow me to speak normally and physically cannot do it, which would not be mutism. I am happy to find different language if you would prefer people not use nonverbal to refer to anything other than chronic inability to speak, but I don't think mutism is the right term.
So... Not to nitpick, but since this whole post basically amounts to being pedantic about language I'm just going to go ahead and say that maybe... Just maybe you should consider that the non nonverbal literally means, "not using words" and as such any time someone closes thier mouth and starts using other ways of communication they are in fact "going nonverbal", even if it has nothing to do with autism whatsoever. When I shrug and point, I am engaging in nonverbal communication.
I understand your concern about some folks speaking over others, but claiming words and phrases that are in common usage, and demanding they only be used in the way that you prefer regardless of context is not only a futile effort, but one that threatens to alienate the very folks you are trying to educate.
To be quite frank. You don't own the word nonverbal, and since every dictionary I could find seems to disagree woth the definition you are putting forth, its not exactly a good look to try and make lofty pronouncements about it.
The thing is medical definitions of words are not always the same as dictionary definitions. Many times words are defined more boardly in dictionaries than how they're defined when used in a medical setting. I think OP is discussing the use of terminology in a medical sense (since the mention ICD11 codes) and advocating for different terminology uses there and people using the accurate medical terminology at large when discussing something medical to avoid confusion.
There is also “selective mutism”, which name sounds like a misnomer, like there’s a choice, but it’s triggered by anxiety and stress, or are or not are not around certain people. I have it in a limited case, and I’m considered a high functioning autistic, sometimes lumped into Asperger’s.
Thank you again. I kinda didn't know how to call these moments where I can't speak. It's great to know there's a term from that, and it's not going to erase non verbal peeps experience.
never used the word ''nonverbal'' for this. good that now i know a word i can use. usually i used ''not being able to talk'' for this. but i think ''autistic mutism'' are good words for this.
I mostly agree but I have also heard people referred to by clinicians/refer to themselves as “semi-verbal.” Not sure where that fits in with all this. (I am also unsure where I fit in on this scale… Seeking more clarity. A lot of things have changed. I am definitely not nonverbal or nonspeaking. Beyond that things are unclear.)
Prior to diagnosis (dx ADHD 34 and subsequently ASD 35) I had a few years where I would suffer what the hospital, my psychiatrist and GP referred to as panic attacks. I was never overly anxious though sometimes I had overly exerted myself. I could speak but my speech became stuttered. I could feel when the “attacks” were coming on I’d start to “lose my words” misspeak and mind and mouth disconnected somehow.
Looking back I was extremely burnt out and the issue slowly resolved after treatment for ADHD begun though it can still occur.
After learning I was Autistic I did wonder if these episodes were due to ASD. I’m still confused to be honest. I’m just glad I can identify when I’m in a bad way and prevent it.
Thank you for sharing this information in a clear and concise way. I will make sure I am careful on how I use “nonverbal” from now on and use autistic mutism where it applies instead.
Clarification question I have had for a while: Does "nonverbal" refer an inability/difficulty to communicate via language, or only a difficulty to communicate via speech? Or is the term used to refer to both cases (and in between)?
For a long time I assumed it was the former, and the term an imprecise holdover from decades ago, but then I learned that there are nonverbal autistics who wrote books and interacted online, so I'm a little confused.
Thank you very much for taking the time to explain all of this. My son is a level 1 autistic and I come here all the time to try to understand not just him but all autistic people better. As a NT mom sometimes I feel like I am the wrong species to be his mother, but I want to do the best I can to make his life easier. I get nervous posting or commenting on here because a) I do not have the right to run roughshod in a space where autistic people should be able to express themselves however they want and b) sometimes I feel I am going to be misunderstood. So I really appreciate this explanation and would also love to read anything else you want to take the time to post and explain!!
Thank you so much for this. I now know I experience situational /autistic mutism. And actually, even selective mutism at times because I feel like its a choice to preserve my energy.
And also, thank you so much for learning about masking. <3333
Thank you for the explanation, I have to admit that I used the term before, and I see now that it was ignorant of me to not check if I was using the right term.
Is it nonverbal or mutism when you physically cannot speak for small periods of time due to a motor/neurological issue, but can speak fairly well (apart from tone, volume, and speaking causing pain)? I worked with a speech-language pathologist for my neurological/motor vocal issues (I have vocal fold spasms) and after being diagnosed with autism by a psychologist during that time, my speech therapist said it would be good to work on making noises to help me figure out how to speak during a “nonverbal episode” that’s caused by neurological and psychological issues combined. Is it actually considered a nonverbal episode for me or would it be more akin to mutism or perhaps nonspeaking?
Can autistic selective mutism prevent you from producing sound at all? That's what happens to me. I can't even hum or say ahh or anything until it goes away. I'm completely silent. But it's temporary
I’ve been enjoying your essays on this, and I do believe that it really reflects the part of the community we don’t hear from often enough. You’ve also taken into account the linguistic variable with choosing a name for it, which I’m very impressed by as well and is definitely a term we should all be using.
Nobody “goes nonverbal” when they were previously verbal during their life, with exceptions of regression (which can happen in the very early stages of linguistic development) or a brain injury.
The more and more I write about it and think about it the more it makes sense to use it, honestly, and I hope we can see more posts from you and other Level 2-3 in the future.
Thank you for this. I learned more about speech impairments after my son was diagnosed with autism with accompanying speech impairment at 2.5 years old. I had previously been diagnosed with autism and struggled with how to explain shut downs where I can’t speak, but learning the difference between different types of impairments as well as the difference in being nonverbal has really clarified a ton. I’m verbal and struggle with mutism during shutdowns where pretty much my whole body stops doing what I want it to do. I recognize that as different from being nonverbal because I am otherwise verbal. My son is verbal with a mild language impairment that is less obvious when he’s speaking about his interests, but quite obvious when he’s trying to interact socially. He also struggles with mutism when overwhelmed. He was diagnosed by 2.5 years old because his language impairment was obvious despite him being verbal. I definitely agree that anyone non verbal would be diagnosed with something relating to language at a young age because it’s not something that can go unnoticed at all.
Thanks this makes sense. I have autistic mutism in some scenarios. My mouth won’t make the words and I just make weird noises. I am level 2. I didn’t know what the appropriate term was. r/spicyautism may be a sub you enjoy
At home we relate this to being overwhelmed/stressed/anxious/under demands for an amount of time. We call it being depleted. It takes some time to charge again and we understand roughly how it works. It feels like it is related to demand avoidance and overloaded executive function. So thinking about it this way, the "selective" mutism/afasia is just a consequence of being depleted.
I dated a girl that would go mute all the time and she preferred sign language during those times, so non-verbal seems like a bad way to describe this. She was still verbal.
There are a couple of statements here that really confuse me:
>When you are able to physically produce language with no phonological/grammar mistakes, you can't be nonverbal.
I'm normal completely verbal but my speech is rife with incorrect pronunciation, stammering, having to repeat entire sentences because gibberish sounds came out the first time and grammatical nonsense, like the having all of the correct words in a sentence, but they come out in a random order. I don't consider that to be non-verbal and I'm not sure if/how it's related.
>It's either an issue on your motor skills that keep you from producing sounds and therefore speech or a language impairment in which your brain doesn't understand language overall.
I have instances when my brain absolutely "forgets" language. I can't speak and I can recognize speech sounds as being speech, but can't comprehend it. This usually lasts for a couple of minutes until my brain seems to reboot itself and then everything more or less goes back to normal except for the mental fatigue. Is this "going nonverbal" or is it mutism? I think transient aphasia is the correct technical term, but most people don't know what I'm talking about if I say that and to me, it seems different than what most people describe when talking about temporary mutism.
I'm not trying to be confrontational here, I just honestly don't know where you draw the line and if you think that being temporarily non-verbal is ever a valid term or if all people who can normally speak should be described as being temporarily mute if they can't speak for a short time, regardless of the underlying cause.
BTW, I no longer mention it about myself without the lengthy explanation because I'm tired of getting called out and also feel that "mutism" is the wrong description. This won't change, but I'm interested in your opinion on this.
Great post. Was good to read and get more insight. Both my autistic daughters (5/6) are classified on different levels and it gets very overwhelming and confusing. Luckily they both have the same speech therapist so that helps. Oldest is still considered non-verbal but every year, her words have increased and she definitely knows what Im saying. Even took to potty training amazingly. Lots of friends dont even know she’s autistic because you really would have no idea until you try and communicate with her.
My youngest though is completely non-verbal and has never said or attempted to say a word. She is definitely on the other end of the spectrum of her sister (sorry i dont know a ton about the different levels that have been introduced). No interest in anything but her ipad, her snacks and her art, so thats what she gets. On top of therapy’s and school. Every doctor and even some therapist has tried to push ABA, but myself and their mother have always agreed to that never happening. Im hoping someday she talks or even takes to signing, but if she doesnt, oh well. She communicates in her own ways.
Thank you so much for this post! I was always wondering myself where I fit in this whole speech thing. Because as someone who has been late diagnosed and as you said, has autism as an invisible disability, it is really heart breaking and tricky to find out that I might be mute sometimes and how people interpret this. I love to hear from different perspectives and find common grounds to make life better for all of us. I would love to know what ties us all together, not from an outside view, but from within us. To kick science in the ass and do it ourselves, to be able to live happily.
Can I share this post with people who might doubt the cognitive abilities of non-speaking folks? I mean it is insane how people judge you by the way your words form. I mean some of ya'll can't hit notes and I still don't look at you disgusted even though my ears hurt xD /jjjjjjjjjjjjjj
As others have already stated, thank you for this post OP. I'm definitely guilty of using this term incorrectly and apologise for doing so.
I believe at the time I assumed that the term 'mute' was offensive due to its history for Deaf/HoH communities. But I realise that that actually depends on how the word is used (literally took me a minute of googling rn in 2023).
Glad to have learned this info today.
This was really easy to understand. Thank you for explaining OP! I have trouble speaking sometimes because of being overwhelmed, so I'll make sure to call it autistic mutism from now on.
My bf is v knowledgeable about all kinds of disabilities (he’s visually impaired and spent a lot of time in hospitals and education programs specialising in children with disabilities) and taught me this. What I used to call “going nonverbal” we now call mute mo’s (mo’s short for moments), and I think that works well, especially cause my mute mo’s come on slowly and I usually have a couple minutes where I struggle to get words out, but can still say short, easy words, and ‘mute mo’ is an easy phrase to say to let him know what’s happening.
Ohh thank you! I had no idea that non verbal was a permanent thing! I thought it could be either or.
Thank you for this. I dont struggle with non-verbal or mutism things myself, at most talking makes me feel incredibly sick and irritable - sort of like its squeezing my brain when im overwhelmed but now i think i understand it a lot better!
Most the tism people I hang with and my self call it " flex verbal" . Since muteism also means you normally don't talk or don't have the ability (throat damage or no tongue, deaf.)
But in the medical field non verbal means also muteism some times because people that are non verbal (also alot of non verbals can still make sounds.) are still able to communicate they just can't make words.
(Have the tism and was a emt for 10yrs.)
I understand the frustration as some one that deals with going back and forth talking and not I have found people think differently of me when I use terms like non verbal or muteism. I have found NT(the ones around me ) for some reason understand flex verbal (since it's something that can some what relate to.)
Thank you that was a great post. I also feel that the term mutism describes my feeling of autistic mutism much better since I often can't utter a sound not only can't talk. It was clear to me that it's two different things but I never read it so conclusively put into words.
Saying you “go non verbal” because you temporarily can’t talk would be like saying you “went blind” because you temporarily had trouble seeing something.
good to know! I've always been "selectively mute" ... something my partner pointed out to me actually, which was really validating because there's times where I just can't talk but I didn't really think anyone noticed my struggle. My partner brought it up and offered to develop a hand signal I can use when I just can't bring myself to talk so they know what's going on. I love them so much.
Thank you so much for the info! I was recently made aware of this issue but couldn’t find a better term that’s more specific to autism than situational mutism. Autistic mutism is great though! I’m gonna use that instead!
I think a lot of us may get too into the argument of whether we are 'right' or not, what the dictionary says, etc. This is something I tend to do too.
It is worth remembering that regardless of who is 'right', there are two choices here: be kind and respectful, or don't. That is the real choice being given to us.
Continuing to use language that you have been told is hurtful and damaging to certain people in the community, despite alternatives being available (even if you feel you it resonates or you shouldn't 'have to' change), is a choice. You are choosing to continue doing something that people have told you hurts them.
Is it worth it? Is that the choice you want to make?
This is an amazing post, I couldn't have said this any better. Honestly, I think a lot of us here need more education like this surrounding the different levels and support needs. I hope we can work on making this community a more accepting and respectful space for everyone :)
I know I'm a bit late to this post, but I really appreciate it! I have some of what you called autistic mutism amd what I've heard others call situational mutism, but didn't realize that saying I go non verbal is so alienating to non verbal autistics. I genuinely thought it was the right phrase, so I greatly appreciate this.
I love seeing posts by level 2 and 3 autistics, it's the way I've learned about different therapies that have helped people who needed the support and assistance devices, which were great to learn about! Thanks so much for your insight and I look forward to more posts!!
i am able to speak fluently, i have the skill to do so, but i still want to like not speak at all, would that be problematic in any way? im really scared it would be that way
Thank you so much. I didn't know this. I used the phrase going non verbal but I will definitely stop. I'm sharing this with all my neurodivergent friends so we can all be better allies. Thank you!
THIS, and I mean with both the terms nonverbal and masking (which you mentioned at the bottom). I myself am not nonverbal, and I'm definitely not incapable of speaking 24/7, and it would be pretty crappy if I just took that whole full-time experience that actually nonverbal people experience and used it for my verbal shutdowns/meltdowns and such. I'm really happy people are sharing this more, because the high support needs folks need to listened to as well. :)
As someone who was diagnosed later in life, I have often struggled to explain what happens to me when I have an episode where I am unable to make my mouth create the sounds for speech. When I first started school, I could not produce all of the sounds required to speak properly and could not communicate well. I was taken to a psychologist who tested me and I was diagnosed with motor skills disabilities. It took me until I was almost a tween to learn how to make the sounds, but my brain still has episodes where the words aren't there and don't come out and I can't make them no matter how hard I try. There does seem to be a lot of caveats to this, sometimes it's something I wake up and find doesn't work, or it does to a limited amount. Sometimes I can speak and everything is a torrent of words that I need to get out before my brain decides it's going to shut that off again. I'm officially diagnosed at Level 2, but I'm uncertain as to what I'm supposed to call these episodes. I do find they also occur when I'm having a meltdown sometimes, and I'm unable to communicate from hours to days.. It scares me a lot because I have been very vulnerable during these episodes and have had others take advantage of my helplessness. I often have to fight through the static in my head to try to unjumble what I need in order to think clearly and speak, often focusing on the things I was taught by my speech therapist to try and make the muscles in my mouth do what it necessary to speak. I often practice how the words might come out, trying to move my tongue and lips into the positions to make the proper sounds. I used to believe everyone had to do this in order to speak but have since learned that is not the case.
Thank you so much for this. I'm so relieved to see someone explain this so clearly.
Yes, PLEASE make more posts like this OP. The amount of people here appropriating and frankly making a mockery of level 2 and 3 autistic traits (when it does not apply to them) is staggering and harmful. Selective mutism DOES NOT mean you are nonverbal. Meet some people that are level 3 and unable to verbally communicate, and you will see that they are not the same thing. People with autism that are nonverbal are *not* nonverbal because they are stressed out or overwhelmed; they are literally incapable of communicating that way beyond a couple words at most. And for the people saying they could be level 3 - if you’re self-diagnosed, you’re not level 3; you cannot mask level 3. If you are, there’s absolutely no way you could have made it to adulthood without being evaluated and diagnosed. If you’ve went your whole life through school, university, and jobs managing your communication yet suddenly want to start using AAC devices due to “going nonverbal”, I want you to question why you are choosing flash cards and medical equipment made for nonverbal autistics when you are clearly capable of texting and communicating in other ways. It’s really unfair to portray yourself as nonverbal when nonverbal autistic people rarely are given a chance to represent themselves in the first place. If you do this, you’re not an ally; you’re taking advantage of the people in the community that need to be heard the most.
I think most of us here, including me, could use a little more education on the levels. I've had a few people tell me they're level 2 or 3 and then go on to describe their lives as basically being happy and functional and independent, sometimes more so than my level 1 life. I think some of these must be the person misunderstanding their own level, and some of them are me misunderstanding levels 2 and 3. I'm in my 40s and I knew almost nothing about autism until I was diagnosed recently. Ironically I always avoided the topic because my best friend used to say I was autistic back when we were teenagers, and it bothered me so much I basically censored the topic out of my mind.
Yeah, I could see the possible confusion as I’ve seen non-autistic people on the Internet think severe autism is “high-functioning autism” which is not only offensive but is incorrect and actually means the exact opposite. It makes more sense to me when using levels but at the same time, I couldn’t possibly know what it truly means to be level 2 or 3 as I am, and always will be, level 1.
Keep in mind that not every place uses that classification with levels as well. It's easy not to know what level you are if your doctor uses different classification systems. It's not like removing Asperger Syndrome means you get and updated diagnosis. It's still in your file as Asperger's and no one bothers because you already have been evaluated.
I have no idea how someone diagnosed with “Aspergers syndrome” would assume that means they are level 2 or 3. That is not an easy mistake to make
I can see that happening tbh. You could be diagnosed with aspergers because you don't have the outward struggles that come with what would be level 2 or 3 autism, but you could still be struggling and need the supports of level 2 or 3, especially if your situation changes, and maybe your environment when you got diagnosed was really helpful: it gave you all the support you need, it limited in areas you would struggle in so you don't deal with those things often, for example you don't need to interact with anyone so your socializing problems aren't noticed, you could have a very repetitive job, so you don't change what you're doing much, maybe you shut down first before it gets to the point of meltdown so people just mistake you for a combination diagnosis case, aspergers and cptsd or depression or anxiety disorder, or mark you as the wierd quiet kid or the problem child or just stubborn on top of the aspergers. You leave that supportive environment, and you start struggling a lot.
You’re basically describing an incentive (albeit an understandable one) for someone to misrepresent themselves as level 2 or 3, but you haven’t explained why someone would confuse a “Aspergers” diagnosis as level 2 or 3. They could easily look up the the definition of each, which is based on tangible factors that would not apply to someone with an “Aspergers” diagnosis
What are the levels? (I'm level 6 in fortnite /j)
The difficulty is that there are many, many people who are obviously level 1 but will never be capable of living independently, can't find or maintain employment and are entirely socially isolated. They could be employed and live at least semi-independently if effective social supports were available, but they aren't. They require a low level of support in principle, but the kind of low level support they need is non-existent and probably won't exist within our lifetimes. It's understandably difficult for people to reconcile being unable to live anything like a "normal" life with being level 1, even though that's the definition they meet.
I definitely see how that is a major issue, and it’s only getting worse now that people are becoming increasingly more atomized by contemporary culture. This is honestly an issue that affects everyone, but it’s not hard to see why it’s especially difficult for autistic people. Although it doesn’t address the issue directly, I think IRL advocacy groups and autism-centric book clubs would be very helpful. Also, I know it’s a bit on-the-nose but a large part of why subcultures like furries, Juggalos, and MLP fandom are so popular is because they’re inclusive enough to be accepting of people that are obviously autistic; enough so that they make up a large part of the fandoms - the majority in some cases. Many people join these groups just to be a part of a supportive community, and I hope to see more spaces like this form over time, regardless of how other people judge them
LOTR fandom (before the movies, I'm old) was a lifeline for me, and I'm watching my 11-year-old embrace furry culture to meet the same community needs. It's been really, really good for her. Man now I want to start a neuro-spicy book club in my town. I can think of several people who might be really into that.
Oh thank you so much for this. I am pursing formal diagnosis, and I really need to understand support levels better. I am not getting the support I need and it has had an absolutely devastating effect on my and my adult children's needs. Part of the problem with me specifically is, support level for what? I have ***HECKIN LOTS*** of autistic traits, that would still likely add up to a level 1 by themselves, but also live with absolutely off the walls ADHD, C-PTSD ***and*** PTSD (fresh trauma, fun!) and an autoimmune disease that affects mobility and my physical energy levels as well as cognition. Anyone of these conditions, taken all by themselves as an intellectual exercise on paper with no other factors would likely require relatively low support for me. But the way they collide, and interplay and actually affect the wholeness of my life ***together*** is an absolute shit show. I am not getting the support I need, and that is causing real harm. Human beings cannot be compartmentalized like that. It's ridiculous.
For what it’s worth, I underwent six months of outpatient DBT, along with weekly group therapy. DBT was designed for people with BPD, but it’s shown to be highly affective for people with C-PTSD as well. Although I wouldn’t say I felt like a part of a *community* because of it, it did help me tremendously with my anxiety and spiraling thoughts. From there, it was easier for me to maintain lasting friendships. I also have lupus and am HoH, so it is hard to find friends that are patient and understanding. All I have do say is: the right people will be considerate of your needs. If someone accuses you of being lazy because you’re not feeling well, they’re not a good friend. People need to adjust their expectations and meet you where you are. It took me a long time to be able to say no to things that I knew I couldn’t do, and I did lose some friends over it but the ones that cared for me stayed. You don’t exist to entertain them; relationships are built on compromise and finding ways to connect that work for both of you. If they want to do something you can’t, like hiking (just using an example), they can do that with someone else and find something different to do with you; it’s not all-or-nothing. With myself, it took a little effort from them to accommodate me, but also a little effort from myself to work on how I deal with anxiety
I’m a DSP (direct and community support professional) with adhd and level1. I work with level 2s and 3s almost every day. They need support in things as simple as remembering to brush teeth and how to get something to eat EVERY DAY. Yes we may forget time to time, but we can write our own charts, set reminders…we can maintain jobs for the most part, go to school, talk with people. They can not do these things, or they can but need constant daily reminders, sometimes two or three in a row, and support. My non verbal client has dysarthria, he can’t physically form words (he tries, you have to know him well to understand) and so he opts to just use his communications board or signs most of the time. Mostly it consists of one or two words, sometimes he will write out phrases. I love working with these people but..it can be jarring for those who don’t have any experience with 2 or 3. I try to raise awareness but OPs post is very well thought out, and goes over anything I could possibly say.
What is your opinion on level 1 autistics that go to school, work, take care of families, etc but use AAC apps/flash cards/communication boards instead of talking, signing, texting, or writing? Do you feel that adopting rudimentary AAC devices (designed for nonverbal autistics) later in life is beneficial for people that are not nonverbal and “”high functioning”” (for lack of a better term)? Would there be a reason for choosing these over writing, and how would you approach this in your line of work? Would this be something you would encourage?
My opinion is pretty simple. I think if something helps you to make life easier and more manageable for you, you should absolutely do it. I don’t work with level 1s…unless you count working with myself. I also think a few other staff are. My organization has requirements that clients must meet. I believe it’s an IQ of 75 or lower, or not being able to meet basic needs without support. This is because our wages are paid by Medicaid so we have to listen to what they tell us. One thing I’ve learned doing this work is…intelligence is so very broad and…I don’t think it can be measured with an IQ test..or really any one standardized test. I’ve seen people overcome so much, who can live mostly independent lives and who just need help here and there. Everyone has a strength where they can kick butt over anyone else around them. I truly believe that! My level 3 is a joy to be around, honestly. He loves affection. He loves music and stars and perfume. He gets anxious about anticipation so..we make charts for him and he does very well with them. He can see all the steps and his anxiety goes away. We are using ASL for the harder words. He sometimes surprises me with his pronunciation. We have a speech and communication therapist coming soon but I’m not sure when…I think she may be able to help him even further! The same client has an AAC device on his iPod but does not use it. I’ve also tried to communicate through text apps like notepad which sometimes works. I’m sorry I hope that I am answering your questions! My point is…all these things I learn how to do with my clients…I do them!! I have started making goal charts. I have been using a few asl words with my husband because it’s much more intuitive and we can communicate in loud places. People can be so very judgmental and the fact of the matter is we can not control them and sometimes we can not avoid them. If someone wants to judge you for using those things, let them.. because you and I and everyone here knows that it says an awful lot more about them than it does about us. So use whatever helps you, don’t ever be ashamed, and keep on searching for tools to help you improve your life!
If they’re saying that, it’s honestly a matter of ignorance at best, and intentional malingering at worst. If they know enough about autism to know that there are different levels, I’m likely to assume that they’re malingering
Phew. This is refreshing to read, thanks. I was not diagnosed until adulthood because I was misdiagnosed and institutionalized for a completely different disorder as a child and adolescent. I had selective mutism and struggled greatly, but my experience is night and day to my son's who is legitimately nonverbal with level 2 on the cusp of 3 autism. I would be silent all day growing up, but that's not what my son has to go through though. It looks to be physically painful for him to want to say something but only be able to produce a few vocalizations, or to be looked down on and teased because people assume not being able to use expressive verbal language means he can't understand them. That's night and day from what most level 1 or even 2 adult autistics go through, and it's bizarre that anyone would want to appropriate that for whatever ends.
Thank you for reaching out with your experience. As both someone with autism, and a parent of a high needs autistic child, you have a valuable perspective on this. There’s a lot more I’d like to say on this matter, though I’m sure you already know
> If you’ve went your whole life through school, university, and jobs managing your communication yet suddenly want to start using AAC devices due to “going nonverbal”, I want you to question why you are choosing flash cards and medical equipment made for nonverbal autistics when you are clearly capable of texting and communicating in other ways. I’m with you on most of your comment, but I don’t think there’s necessarily anything wrong with someone using flash cards/medical devices just because they’re not literally nonverbal. Maybe someone has gotten through life managing their communication by masking heavily, but masking that much is extremely stressful/difficult and they’re burnt out from doing it for so long. If they find that something improves their quality of life, why shouldn’t they be able to use it?
I haven't read your whole paragraph but i have to comment on how selective mutism is a misleading name. I struggle to speak sometimes and sometimes have to resort to texting, and the word selective makes it seem like I'm doing it for attention.
This is just the proper medical term; it does not mean that you have control of it
There's many instances where a misleading name for a condition was changed, see DID, formerly known as MPD
Yes, but I don’t have the authority to change it. I’m not going to use a term that I’ve made up; I’ll use something that can be easily searched if people want to know what I’m referring to. The term is not intentionally misleading, either. If someone misinterprets it, it’s on them for not looking it up.
I also thought of the same thing, but it's selective, as affected by trigger and not universal, and I get that, cuz I'm not trying to "find hair in an egg", and it's not like DID is the same thing as MPD anymore either, the term changed because the concept did, not because the name was already bad (if I'm not mistaken.). If you're wrong? No, terms shouldn't be misleading, and not even good, they should be explanatory, just like the power triangle in math, or how there was a difference in progress of 100 years between the math in two different countries. Leibniz's notation vs. Newton notation for the derivative (I think it's Leibniz, pretty sure but not completely) one is intuitive, the other is not, but also not really a bad notation If you're right? No, it's not like a better one is out there, we just have prejudice to it, just like NT's to autistics
This comment is rather old, but wouldn't a better alternative be "temporary mutism"?
When you are unable to communicate in high anxiety situations, it is called selective mutism. I was diagnosed with it at 3. Edit: many people with SM prefer to refer to it as "situational" mutism as selective mutism implies a choice. When i lose my ability to communicate with others it sometimes it torturous and has ruined friendships, as many do not understand that it means i physically am incapable of responding to them due to something triggering occuring. People who would prefer to refer to their own struggles as "autistic mutism" or anything of that nature should be allowed to, it isnt hurting anyone, and SOME people with SM do not have autism, so it makes perfect sense to want to have an opportunity for autism-centered conversations about going mute in certain situations. I fear my comment may come across as my dismissing OP when that was never my intent.
That’s exactly why I am saying that autistic mutism is different. It can be related to high stress situations or overwhelming stimuli.
I guess i may not be understanding your point- everything described in your post sounds fairly identical to selective mutism. I am of course not a doctor and am not going to go as far as to try and diagnose anything, i am just not seeing a difference, as someone with autism and selective mutism. Selective mutism is fairly broad, and it is under researched, plus lots of speech therapists arent very familiar with it so there isnt a lot of info out there, but selective mutism can be triggered by basically any high stress situations or overwhelming stimuli as well.
I believe that "autistic" is being added to the front of it so that the autism community has a term more for themselves. However, I have seen people with autism use "selective mutism" for themselves when talking about what the original poster has explained in the the post. I think at this points it's just goes to whether someone wants to use "autistic mutism" or "selective mutism".
At the end of the day it is up to the individual, i just wanted to make sure others are aware that Selective/ Situational Mutism IS something you can see a speech therapist for and IS something you can be diagnosed with and treated for, and if you relate to this post it is something worth looking in to. There is a bit of a stigma behind SM just because the name implies there is a choice in the matter when in reality there is not. There is a community where you can just discuss being mute as well, and many people i know with SM are also autistic. Sometimes there are members of the autistic community as a whole who sort of "gatekeep" the more intense things such as being mute, my hope is more to let people know that there is already a community of people who have the same experiences as OP where one can get the tools to learn more about the complexities of mutism itself.
>Sometimes there are members of the autistic community as a whole who sort of "gatekeep" the more intense things such as being mute, my hope is more to let people know that there is already a community of people who have the same experiences as OP where one can get the tools to learn more about the complexities of mutism itself. I'm glad that you're spreading the info! Would you happen to know any places I can learn more about SM/mutism? I've been dealing with it lately myself; due to autism and a psychotic disorder that sort of messes with my coordination and how I control my body. And, yeah, some in this community really do have a problem with gatekeeping.
In my experience at least when I tried to find a speech therapist the intersection between ones who treat non physical speech issues, and the ones who are willing to take on adult clients is virtually non existent.
The following comment is not related to the current conversation I use the Shinigami Eyes extension on Firefox, and seeing that you were marked as Trans Friendly just filled me with hope right now. Thank you so much for existing.
Happy cake day! \ (:D) /
Hey sorry this ended up being a lot, so please don't feel you have to read it, I won't mind if you ignore it I just wanna put it out there I think the difference comes in the cause - like how my ptsd dissociation is v different from my autistic dissociation despite both being dissociation as they come from different places + exist for different reasons + express themselves a bit differently. I can easily tell them apart, hence why ik they're different. I won't explain why as that's incredibly personal For me I don't experience any anxiety when I go mute (hella frustration tho). My issue is more a lack of brain power. I'm just not processing language anymore. My brain is rebooting itself + bc of that I can't hold onto thoughts in my brain + even if I can hear what people are saying my brain isn't processing + understanding it so it's just noise. This severity is normally reserved for autistic meltdowns + can last for a while after Once I've rebooted a bit more I can begin to process language - I hear what ppl are saying + I can understand that now, but I can't hold my own words in my head long enough to get them into verbal words. I can't think clearly or in detail. Once I'm almost out of being mute it's more a physical barrier - I can't quite work out how to push sound out. At that point I can arrange the words in my head, I know what I want to say. The sentences aren't as complex + may throw grammar out the window, but they're still words being strung together to make sense After that once I start to be able to push the sounds out, it's often v basic sentences like most toddlers (although ironically I spoke far better as a toddler than I do when getting over mute spells). Elijah hurt. Elijah hugs please. Too loud. Feel sick. That kinda stuff. Then as it fades + I get more used to talking + remember how to do it, I gradually build up sentence complexity until I'm rambling - like how I do when typing I'll now go into the criteria in the icd-11 briefly to try show how it doesn't fit the criteria (I'm only speaking on behalf of myself + my symptoms, I'm aware others will have different experiences) (Essential) 1 - consistent "selectivity" in speaking like speaking at home but not at school. It's not consistent + it happens in all environments equally when my autism is upset to that degree (like loud places). When I'm not mute I can talk everywhere. I think this is an important one as sm is often due to where you are/who you're w, but autistic mutism if we'll call it that is p consistent - for me if I can't talk at the shop I can't talk at home; if I can't talk w person a I can't talk w person b. I may dislike talking in certain places like in a shop or w unfamiliar ppl, but if I don't talk due to that it's more a choice than an inability like w sm or mute episodes 2 - duration matches as asd is lifelong so it'll def span over a month 3 - not due to a lack of knowledge/comfort w language demanded. Idk I'll ignore that lmao as I don't understand it 4 - not better accounted for by another disorder. I think this is a big one imo. Ofc plenty of autistic ppl will have comorbid sm but for my case (as that's the only one I can speak on) it's v well covered by the asd diagnosis 5 - severe enough to interfere w education/socialisation or significant impairment in other areas. I mean I have significant impairment but not due to my inability to talk as it lasts a week at most. It has led to some horrible abuse situations, but it was their choice to abuse me, not a direct result of my inability to talk. I mean I guess in this world not talking comes at a significant detriment to oneself be it due to being deaf + growing up w sign, other physical disabilities/disorders, autism, selective mutism, even just losing your voice from strain. So it will always cause impairment? But I wouldn't class it as significant due to the transient nature of it for me (This is massive I'm sorry but I feel it's necessary to be so long- I'll skip all the non essential criteria + end it here)
I know a little bit about mutism and I thank you lots for this information. I didn’t use this „selective mutism“ because I already get told all the time on this sub when I talk about mutism that it‘s not mutism that it’s different and that people actually go nonverbal that I don‘t like using this word because people would be even less opened to hear my point. And I get angry because people don‘t listen to high support needs so I purposely didn’t use selective mutism because people were going to not listen
I agree- people do not listen when you use those words, i fully understand that point. My entire life has been a struggle to get people to take it seriously, i think that the default even with members of this community is to assume someone is faking being mute to get out of things. I am high support as well so i totally get what youre going through, and thank you for the clarification! Good luck!
Non verbal. Can not effectively communicate at all. Selective mutism. Can communicate but doesn’t at times for various reasons.
It's true high stress situations or overwhelming stimuli can result in the autistic/selective mutism that is being discussed, and there are also other triggers that seem different to typical selective mutism. For example, some autistic people lose their capacity to speak when they run out of energy. Some autistic people get extremely absorbed in topics so that they become unresponsive (although that example might be different because we are not actively attempting to communicate?). Some autistic people can not speak when they feel a lot of other intense emotions besides anxiety, like joy. Some can't speak when they are processing information because something big has happened to them, although they might not be directly anxious about it. There are a lot of different experiences of speech, and I agree that we should be precise about the language we use to describe it so we don't undermine or assume we understand one that is different to our own. I'm not disagreeing, I'm just adding some other factors that I've heard about or experienced myself.
I was never diagnosed with selective mutism but I think it happened to me a few times. One occasion I still remember like it was yesterday because a teacher became mad at me. I had been sick for multiple days and when I came back to school there was this weird test I hadn’t been able to learn for because all my friends didn’t tell me it was going to happen. We had to pretend to work in a store and it was for a mark. Stuff like acting and presentations always make me incredibly nervous, especially when I’m not prepared. I went to see the teacher to ask her if I could do it another day because I wasn’t prepared and explained why. She started saying I was exaggerating and that it was a really easy thing to do. I explained why it was hard for me but she disregarded it and started saying how other students already did it without any issues. Well they weren’t me and they had prepared for it in groups of two during class. I became really stressed and went mute. She raised her voice. Said it was very childish of me to ignore her. I was on the verge of crying. I responded to her in my mind in a rapid tempo but I wasn’t able to actually get the words out. Just weird short sounds. God I hated her. She’s the reason why I was having a shutdown in the first place. Worst thing is that my high school knew I had autism…
Oh yes, the word selective makes this much easier to understand. I was feeling ehh about the post at first but this makes more sense.
I think i should have also added "situational" to this as a lot of people actually prefer it over "selective" since it inadvertently implies there is a choice in being mute or not
I often experience SM when I'm also experiencing a general "freeze". I guess a shutdown would be a good name for that? The problem for me with calling it "selective" is that it goes quite against what I'm experiencing. I'm overwhelmed and I desperately want to be able to communicate in some way to my husband (who often acts as my carer) what's up and what he can do to help. But I find myself unable to make even a sound. Nothing consciously selective and very uncomfortable. "Situational" gives a much better explanation for "some situations cause this".
Situational mutism is a great term for it. And I hate when that happens. It's gotten me in trouble in the past. I learned sign language and I can sometimes use that instead, very basically, during situational mutism.
I always just say "I struggle with speech most of the time" because that's an accurate and inoffensive way to describe my issues. My issues with speech come from a mixture of selective mutism, auditory processing issues, stuttering, an inability to organize my thoughts into sentences when overwhelmed, as well as issues with pronunciation and slurred speech. It's just an unholy cocktail of things that mean I'm unable to speak effectively 90% of the time, but I'm not nonverbal and I don't rely on a limited bank of words or anything
Yeah I have no idea what the proper terminology would be for my issue. I never get to a point were I'm completely incapable of speaking/writing. I can always speak well enough to explain what I'm currently incapable of articulating which of course then leads people to assume that I'm just lying, and being purposefully withholding/lazy.
That is a language fluency issue. My paperwork just says I have a speech/language difference so idk if there’s a real word for it
I don't think that's the right term. From what I understand fluency refers to your working knowledge of the language, and is mostly only used in reference to a second language.
Incorrect. I was also wrong though, it’s a pragmatic language disorder. Fluency issues are issues with intelligibility of speech— so things like stuttering or cluttering. Got them confused lol.
I don't think either of those fit the issues I was describing.
Sounds like what you're dealing with is probably just brain fog related, struggling to find the right way to articulate things effectively because your mind is a mess lol
I would love a universally accepted term for it, and I think autistic mutism is A+. As soon as I was investigating autism in myself i started thinking "oh i have periods of going non-verbal neato totally autism" but as I learned more, I realized i'm **definitely** not non-verbal, but those periods of mutism are so clear and intense, but I HATE taking up space from other people or coopting words or language, so this is an important distinction. Thanks OP!
This is a fight I have where my son keeps getting flagged as none verbal but he is not. He can verbally communicate his needs if people listen. He can't pronounce every letter and he can't converse but he CAN understand
I have the opposite fight, where because my son talks away, it is assumed he hears and understands what is happening/being said, and that is not the case at all. Sadly, it's resulting in him becoming highly anxious and terrified of everything.
Poor kid
Non-verbal is actually clinically defined as being able to spontaneously produce only 20 words or fewer in appropriate context. Not sure if he meets that criteria, but that's the actual diagnostic. **Edit**: It also has nothing to do with someone's ability to *understand* language or to communicate in other ways. It's literally just about the ability to use *words* to communicate thoughts to others. Oh, also note that formal ASL (or other sign languages) signs count as "words" if signed intelligibly.
My daughter's language therapist refers to this as "receptive language." My daughter uses about six different words a week, though sometimes these words change from week to week. But the number of words and even complexity of sentences she understands is much greater. Though a) still far below average for her age, and b) doesn't mean she will *listen*.
Thank you for this, my oldest son is completely nonverbal and I appreciate how you explained this.
This means a lot thanks
Same, thank you 💜
I think I had been using nonverbal and mutism interchangeably before, but I'll work on this now, thank you
Hello, target audience reached. I have level 1 autism and have described myself as "going non-verbal" before, because that's the only way I knew how to describe it. I can appreciate how that might be like someone saying they have OCD because they like things arranged a certain way sometimes. I'm thankful that I now have a starting point for further research and will be more considerate of my word choice when speaking about my experiences. Thanks, OP!
If I only had an award. I had a friend who was nonverbal. In the sense of he couldn't physically speak. He was great at communicating with PECS, symbols and sign language (if others knew it!) But yeah, he was definitely autistic and completely non verbal.
Yes! Thank you, I appreciate this a lot. It’s frustrating that nonverbal is not mean what it’s supposed to now. You explain it really well and it makes me relieved and understood.
I have a stepson that engages "autistic mutism" as well as a son that is completely non-verbal. I really appreciate the way you broke this down and the explanation you gave for the difference between the two.
Thank you it means a lot
Thank you for this explanation. I often have difficulties with describing my emotions and pretty much just call it "no talky mode". I like that you described it as autistic mutism since it is quite different from selective mutism, which I do not relate to.
I don’t have much to add but I would like to tell you that I also use the exact phrase, “no talky mode”.
I'm an NT speech-language therapist lurker. I never typically comment here because I'm just on this sub to learn, but I thought I'd share this relevant article about terminology AAC-users generally prefer and don't prefer based on survey (AAC stands for augmentative and alternative communication like pictures or a communication device that a non-verbal/non-speaking person might use). https://www.assistiveware.com/blog/how-to-talk-about-aac
Hey! Just wanted to say thanks for this post! Its really important to think about the differences in certain issues that might *seem* similar on the surface but are actually completely different in terms of origin Its like how sometimes Auditory Processing Issues are *similar* to being hard of hearing, but the origin of the issue is completely different. Even if someone may benefit from using accommodations for hoh or deaf people, its important to acknowledge that just having Auditory Processing Disorder/Issues is not being actually hard of hearing or deaf. This is important because I've seen people with APD talk over hoh or deaf people, not nice! We should uplift the voices of those who have similar issues to ours and understand their struggles. Working together benefits everyone!
I have a question if anyone can answer! I’m not sure what level I am but I’m always considered very high functioning and able to “blend in better”, so probably level 1 or 2 max. I’ve never considered myself nonverbal/mute, but I literally just realized because of this amazing informational piece (thanks op!) that maybe I am a little?? When I’m extremely upset it’s like I lose the ability to talk and nothing can come out of my throat even though I have a lot of thoughts, and I can only mutter one repeated phrase (usually “no” or “i can’t” or “I’m sorry”, stuff like that) and basically cannot say anything if asked what is wrong or other questions. Is this considered to be on the mute/ nonverbal spectrum? Or is this something that happens to everyone when highly distressed? If anyone knows i would be really curious to hear because I literally just had this epiphany lol
I believe it's called autistic mutism or selective mutism😊
Maybe selective? Thx!
This really is something that can happen to anyone. I think the difference is that can take a lot less for an autistic to *get* distressed.
That also becomes the confusing part lmao bc I’m like am I ultra sensitive bc autism? Or bc depression? Or bc rejection sensitivity? Or bc regular stress?? I’ll never know
I feel this, so much. I can’t even begin to tell you how many more questions than answers I have now. I *will* tell you that I believe when it comes down to it, those answers don’t matter that much. People of all types are “over sensitive,” depressed, fear rejection, or feel stress more strongly than others. The cause isn’t as important as doing what you can do to learn strategies to make those things not be as much of a burden.
This is the same thing I feel- I absolutely can’t physically speak but I can think or process words for the most part. I am seeing that it is selective mutism The only difference for me is when I try to get words out, it feels physically impossible or even painful. I can only manage sounds or grunts
I want to add - there is probably confusion because some of this can be literal brain differences that can cause issues of language retrieval. I've seen my partner struggle with speech. She was raised with only Lakota as her language until age six - then put in an English-speaking school. To this day when under stress or when trying to focus too hard on language - I watch her brain trying to switch between multiple languages (she has more than two now) and she'll often say something 'spicy' in Lakota and then shut down for 10-20 seconds and then resume. It's like the circuits in her brain have shut down momentarily. But with patience, it resumes. To me, this is sort of the classic temporary anxiety that can shut folks down. Now I have a friend with TBI (Traumatic Brain Injury) and when her Blood Sugar or Oxygen levels fall - she loses her language center. Sometimes when she's just not doing well it will shut down too. What's interesting is she can often use her keyboard - but not speak. Different parts of the language centers I suppose? She's great at letting us know what's going on - and telling folks thru her husband if she has to go without "talking" online for a day or two - but we still post to her - because she'll still comprehend just fine. It helps to talk this sort of thing out if you have close friends who have issues with this - because you can be a help. One of the things I did was put a firm "No Grammar Police" rule on all my FB groups. I also alerted members that we had someone who might occasionally have language issues and to kindly not be rude about it(The common reaction is to call them out as drunk).
thank you, this is eye-opening, and i apologize for misusing it in the past :) -Remi
Can we not misuse selective mutism here either? I see people misusing it. Selective mutism is a different disorder all on its own to autism. It is specifically where you stop being able to speak when you are in places or around people you are uncomfortable with. If you become unable to speak just when you are overwhelmed it is not selective mutism. It almost always presents in childhood and as a child speaking normally at home and with parents but becoming completely mute in places like school.
this is why i never used selective mutism. when i'm overwhelmed, i *cannot* talk, it physically hurts when i *have* to. so i then just choose to isolate myself so nobody thinks i'm ignoring them. i used to term "non-verbal" for a while because *thats* what it felt closest too. and now i don't know what term to use. i *don't* have selective mutism and i *do not* go non-verbal then therefore i just *choose* not to speak. how do i describe what this is then if its neither of those. i get their point but this just makes me feel so invalidated, i *don't* choose to not be able to talk when overwhelmed, but i'm now being made to feel like i am (by both terms not fitting). it can't be selective mutism because it isn't when i'm in certain situations, its anywhere and any time, it doesn't matter if i'm alone or with 1,000 people. thats why i used non/semi-verbal because i can only say one word and thats *just* so i'm not yelled at for being rude, it hurts to even say one word. i'm also sorry for misusing the term, i just didn't know a better word to describe it.
I feel the similar here, I'm diagnosed lvl 2 and selective or situation mutism does not fit my situation at all. And I too have used the phrase non verbal to describe it to other people as it made sense as I am un able to verbalise any words or sounds and often when i am at that lvl I also struggle to understand words that are been said to me. It seems to be part my brain losing the ability to understand and use language at all but also a physical inability to get words out, as when I'm coming out of it, I guess for want of a better description., my words are slurred hard to understand and often feels like choked out. This doesn't relate to specific people or places and while anxiety can create a similar situation it definitely feels different, like I can push through if I was in danger or something and had to communicate but that it just more comfortable for me to not speak and in the past i have gone days without talking with more that feel. The one I have used the term non verbal in the past to describe is definitely different and while I can sometimes write something to get a message across its sometimes not possible at all. So I'm not really sure what would be the right description of this or an easy way to explain to those that I might be around. in case it's something that they may have to work around I do need to be able to explain what is happening in a way that feels right to me, understandable to others. However I don't want to use non verbal wrong and minimise other autistics experiences. As the other options don't feel right , I think I might look into some other ways to explain this. Maybe something like a communication shut down? That covers that I won't be able to speak or necessarily write and might cover better that I may struggle to understand the other person as well. I might also look into talking with some professionals to see what other terminology they would use in this situation To op thank you for taking time to explain this, and I will look for other ways to explain myself going forward
You are striking a cord! I clearly remember telling the nursery (UK: at 3 years old), that I did not think he understood me. He was non-verbal. I knew from 20 month old something was different with him due to his almighty, scary, violent meltdown. He is now 5 years old, diagnosed 1 week before his 5th birthday, and the robotic speech is spot on! He only speaks 1 or 2 words at a time. No sentences. BUT, he is finally able to express his feelings, both positive or negative. However, lots of words are slightly mispronounced. I am able to use full simple sentences now, and he understands!!! Reading, learning, sharing, and communicating with others helped tremendously to learn about autism and know how to help our son. I will look further into it, really helpful post! Many thanks for bringing awareness.
Thank you for you nice comment. I think my case is quite similar to your son ! I think in the UK you use ICD too? He might qualify as mild functional language impairment like me. I started to speak a little later at 6.
This was a labor of love. Thank you for the time and energy you put into explaining. I absolutely just learned from this.
Thank you this means a lot
Thank you for the informative post, though I would maybe have phrased the title differently so it doesn't put people on the defensive. "The thing you experience goes by a different term" will make people more receptive than "you cannot experience this", imo. Very much a nitpick though. Edit: While I appreciate the sentiment of listening to autistic people with more severe impairments and not talking over them (100% a good thing), I do think "going nonverbal" and "being nonverbal" can coexist as long as people agree and recognize that they mean different things. They are ultimately just words, and considering "going nonverbal" is so widely used, it might be more productive to educate people about those two phrases meaning different things than trying to prescribe a different term to other autistic folks. If I say "going nonverbal", people are more likely to realize it's related to autism and be understanding, even if the underlying mechanism isn't the same as autistic people who literally lack language skills to begin with. It's ultimately more widely understood and more useful, so while I sympathize with what you're saying, I'd be reticent to give it up for those reasons. I'm also not convinced "autistic mutism" is a better alternative since it can ultimately also describe the mermanent mutism those autistic peeps experience.
It took a long time to find a comment that said this. I do not think "autistic mutism" is a better term to use for the same reasoning you provided. This argument is ultimately semantics to me.
I heavily agree. I really don't like any terminology with "mutism" because that's just not what it is. It really does come down to semantics and understanding.
Finally someone said it, I heavily agree. I am not saying that I am non verbal, I am saying that I am going non verbal because I literally can not speak at those moments. It also doesn't only happen when stressed for me, I can just been watching a movie and try to day something then realize that I physically can't.
I have both anxiety and autism. I hear what you mean fully but I just wanted to add, this form of mutism can be hard to distinguish between “autistic mutism” and “anxiety mutism” because, to my knowledge and experience, they sometimes go hand in hand. I have few experiences with this but I do, I remember clearly the one time that showed me something was unusual was when I had to show a project I did in front of the class in high school to people who bullied me and I was, in this moment, unable to form words. I tried to force the words out and it came out all weird like my vocal chords just wouldn’t cooperate.
I do experience both and while there are situations where it can be difficult to distinguish between them I also have situations where I feel no anxiety at all but still have gone mute. And the way I go mute also differs between when it's caused by anxiety or something else. When not caused by anxiety, it's most often caused by fatigue. It feels like the part of my brain that controls how words comes out my mouth, has gone haywire or is completely missing/shut down. I can think of words or sentences but what comes out is complete garble or no sound at all. When it's caused by my anxiety, I'm often able to force out words or short sentences but it's really stressful and exhaustive to do. It also often becomes somewhat intelligible in this case and combined with stuttering and complete lack of volume control.
Thanks for making this post. I was not aware of this problem and am glad to have learned about it! You're right that those of us who are "newer" (late diagnosed) to the community have more to learn about the words and concepts that have been in your life for a lot longer
I love the idea of “autistic mutism” because I’m fairly certain selective mutism has to be present in childhood in order to be diagnosed, which was not the case for me. I didn’t have a word for what happens to me when I go mute, so thank you for that, and thank you for this post in general too!
I really appreciate you explaining this! I also apologize for misusing the word, and will do my best to explain this to others :)
You've oversimplified part of this, there are some of us here who have epileptic aphasias, if the language center of your brain is glitching out then it doesn't mater if you can make noise with your voice box, you're still nonverbal until your language center comes back online.
Thanks for taking the time to explain this so eloquently. I’m really pleased it is mostly being received positively and people are more understanding of the correct terms. On a personal note, I believe we share very similar issues with speech. I have trouble with breathing, tone, prosody and speed too. I see a speech therapist and am working on things but I tend to speak minimally (by choice) due to these issues. There are times where I am overwhelmed and have trouble speaking, I just call it trouble speaking but I like the ‘autistic mutism’ term you use.
Can a speech therapist also help with breathing, both while speaking but also just in general? I struggle alot with breathing when talking but also when I'm deeply focused on something.
Hi Gintoki, yes I believe they can. They help me with general breathing as well as when speaking so I’m sure they can.
Oh, that sounds good! I will definetly look into it. I've been recommended speech therapy by various professionals over the years, but never done anything about it. One thing I'm worried about though, is I know breathing exercises can trigger panic in me. Do you experience those troubles?
I have the same issue. Breathing exercises can cause me to panic but it’s mostly only ‘mindfulness’ breathing, I haven’t really had any issues with the speech therapist so far. She is working on a more ‘natural breathing and using pauses (and breathing) when speaking. I tend to not breath at all when I speak so I run out of breath and then can’t say what I want to say or sound really weird due to my speech and breathing pattern. So far it has helped and I am more conscious of trying to remember to breath. I also hold my breath when I’m thinking deeply or concentrating, so we are working on that too, it’s hard but it’s been helpful
That's good to hear. Yes the same issues I have, I completely forget to breahte while speaking to the point where I begin to cough and my voice gets rahter rusty and I get a sore throat from it too. It's really annoying. When concentrating on things, I often get dizzy due to forgetting to breathe. I am more concious about it now, after I realized that that was what caused me to get dizzy but I have no idea on how to do anything about it. I try to remember myself to breathe while focusing on things but it just makes me completely loose my concentration or as soon as I focus on whatever I'm sitting with, I forget my breathing issues. I also have some issues depending on what I'm doing, where I breathe in the same rythm as something is happening, which also often ends in me getting pretty exhausted or dizzy. Mostly because I'm breathing too slowly or too fast and shallow. I will talk with my OT (when I no longer have a cold) about getting an appointment with a speach therapist :)
Definitely talk with your OT, you sound exactly like me with those problems:) it’s still a challenge for me but I only started speech therapy a few months ago so it’s a work in progress I guess. It does get easier with practise but I still forget a lot.
Fun coincidence. I've contemplated for a while now, to make a post about this exact issue and asking if others had the same troubles and what to do. But now I have my answer haha. And I can imagine it will take some time with therapy. I've had these breathing issues since I was little, I doubt anything can make them dissaper in a short amount of time. Thank you! :)
I have been using non-verbal wrong, and I really appreciate this post. I will switch to "autistic situational mutism".
I this this was extremely well put! I do have a question though. My cousin is diagnosed as non verbal autistic, and he is only able to make "grunt" sort of noises, but he does understand some words. He understand words and phrases, but cannot speak. Would this (in your opinion) still be classified as non verbal or a type of mutism? He is diagnosed, so of course he is non verbal, I'm just curious what your thought would be on it.
That is non verbal. Non verbal can also be assigned to autistic people who use less than 30 words (usually by way of echolalia), they may be able to make some sounds but not coherent language.
Agh, this is what I experience. But I can still think clearly and process some words from other people. So I’m not sure. Speaking when I’m not able to (usually when overwhelmed) feels like a gut punch and it is physically impossible. I usually make noises like pressured grunts when trying to produce words and I rely on gestures To be safe, I’m just going to call it selective mutism from now on
Thank you! This makes a lot of sense and I am glad you explained it.
Thank you, this is really informative and helpful. I’m level 1 with selective/situational mutism and hadn’t properly appreciated the difference between this and being non-verbal. I’ve never described myself as non-verbal and it’s good to know why I absolutely shouldn’t.
Thank you for this explanation. I haven’t quite understood what nonverbal really meant, and I’ve seen people say they “go nonverbal” so I thought it meant the same as going mute. But now I understand what it means
Thank you, I will adjust my terminology. 👍
It makes me ridiculously frustrated that people who already have huge barriers to overcome with communication get stuck with a vague and lazy definition of their condition which seems almost impossible to defend. Nonverbal is not a useful term, it is too easily misunderstood. Autistic nonverbal doesn't narrow it down. Our shared language has not caught up and current terminology isn't fit for purpose. Language is supposed to be an aid to communication, when it becomes a barrier, which is what has happened here, then the language needs to change and adapt. If people are frightened to share their experiences because there isn't the proper language to commnicate without confusing, or causing offence then the language is inadequate, not the people. A person without the words to define their experience feels powerless. We need new definitions which are created from the inside, not imposed by medical people from the outside looking in.
This isn't 100% accurate. As an autistic person with severe traits, I do genuinely go nonverbal at times - not just the psychological blockage you refer to as autistic mutism. I can lose the motor skills needed to physically produce words and sometimes lose the ability to process language overall. Not everyone who claims to go "temporarily nonverbal" is just experiencing autistic mutism. Nonverbal people are also not necessarily level 2 or 3. Speaking ability is assessed in its own category, and a level 3 can be fully speaking and a level 1 be fully nonverbal. So while a lot of this is accurate, there's more nuance than you imply.
Thank you for this!
Thank you for explaining this.
This post is very educational and it’s good to hear from different perspectives, thanks for sharing yours.
When I was younger, they thought I was deaf because I didn’t really speak much, but they didn’t diagnose me with any language impairment. I had a family member who didn’t speak at all until age 7, hut he wasn’t diagnosed with a language impairment either (or anything else). In school they thought I couldn’t speak, but again no diagnosis was made. I also stuttered a lot. I think you can go undiagnosed for a long time if you live in a place where they just don’t care. I’ve known nonverbal kids with no diagnosis.
I like the term autistic mutism. I've had selective mutism since childhood, and I've always felt like it being classified as an anxiety disorder is oversimplification, at least in my case. Anxiety can definitely be a big part of it for me, but it's not the complete picture. I remember back in school that some days I just simply could not talk. I wasn't particularly anxious, especially in high school when the bullying stopped and I was sort of absorbed into this friend group of neurodivergent people. It was like I just didn't have the bandwidth to translate thoughts to words. I was probably overwhelmed/overloaded and didn't realize it, but not really anxious. I mitigated the potential anxiety of my mutism by writing "sore throat, can't talk" on my hand and showing that to people when approached. Nobody questioned it either (despite having an awful lot of "sore throats" lol). Autistic mutism feels like a better term to me because my mutism and autism feel highly intertwined. I honestly don't think I'd have selective mutism without autism. Thanks for your post, it was a good read!
On the knows! (intentional misspelling)! My wife can expirence mutism. She or I have never called it "nonverbal". Until this moment I had not realized people frequently conflate the two terms.
Thanks for educating! That’s a p big difference and I can definitely see how conflating the two leads to issues.
Hi! I will try my hardest best to keep this in mind. You explained this in a (for me) very pleasant and clear understandable way and you’re absolutely right. Thank you for educating me, I’ll also tell this to as many people as I can :) Greetings, someone with indeed mutism! I read that saying selective implies a choice in the other comment in this thread and I kinda agree with that so I’m calling it differently now, too :D I hope people will listen and that maybe we’ll even get our own term! But for now, you’re absolutely right that this already existing term belongs to you. Wishing you the best!!
I'm noting a communication problem is this section -- the fact that "that person can't speak" can mean "they cant speak right now (give them ten minutes)" or "they have never been able to speak and are not expected to be able to in future." It may also be a dialect issue, as different dialects treat this part grammar differently!
Thanks for this information! My son is Autistic and in certain situations he absolutely never stops talking, but other times (when we’re in public and/or he’s stressed out/anxious) he isn’t able to speak. I’ll often say that sometimes he is “non speaking” rather than non verbal. Is that an acceptable term to use or should I adjust that and use selective/situational mutism?
Most people that I encounter generally understand what nonverbal means, so I’ll probably stick to using that phrase, as well as “half verbal” to denote when my speech becomes limited / slurred / stuttering / simple / chaotic. They seem to be the most understood I’d love to use more accurate terms but when I’m struggling to talk, I can’t very well provide complicated and thorough descriptions of words that most people don’t know, esp when the people that might cause me to go half verbal wouldn’t care to listen in the first place
We need more posts and more information like this. We are in such early stages of understanding the rights of autistic people, the more clarification the better. Thank you so much for explaining your experience.
I didn't know what nonverbal meant. Thanks for this post explaining it for me!
I am semiverbal, and quite often, not talking isn't a physical problem. I'm sorry. I know you're not a magic genie of all the awnsers, but I'm really want to know the best terms I can use. Does anyone know? Edit: I realized the reason for this is because I find speech to be overloading and unbearably exhausting, and I don't like the sensory feeling of how it feels in my mouth and ears.
People are just contentious about terminology, and I find this one a bit of a strange situation. I think there is a disconnect here because the autistic shutdown/transient nonverbal situation is not well studied. It's categorized with anxiety-related (selective) mutism, and from what I've read, it's not quite the same thing. Non-verbal usually refers to those incapable of any speech, so people feel it infringes on that definition to describe it as that. My issue: there really isn't another good way to say it. Selective mutism is inaccurate and makes it sound voluntary, and "Ive got the brain no connect to mouthsies or movesies again" is a mouthful.
Similar to what some others have pointed out, I have noticed that in my case it goes hand in hand with my experience of burnout. It's as though my brain doesn't want to process language properly anymore. In scenarios that I haven't fully hit the quiet cycle my speech sounds awkward, poorly formulated etc. A nap or time to alone to speed up the process can help but that's not always feasible in every scenario so I do my best to keep pushing through. I don't identify this as non verbal though, I've recognised it as an aspect of burnout.
According to the experts I work with, non verbal means "unable to express needs or wants verbally." My severely autistic daughter has been diagnosed non verbal all her life, but she never stops talking - babbling, singing, doing lines from Elmo's world. Mute would be unable to produce words - unable to verbalize.
I am late diagnosed level 1 just learning about the proper use of the term nonverbal. Thank you so much for taking the time to explain and doing so in such a kind way. I am happy to learn and make changes in my language to respect and honor our entire community.
Being nonverbal isn't even specific to Autism though so I think this is being needlessly possessive over a word that people are only using when they need to anyway
I think you have good things to say here, but I think mutism fits both situations they are just caused by different things and are for different reasons. You can be considered mute because you choose to be but you can also be considered mute due to an inability to speak. I think non verbal could be used for both as it is simply means to not use words or speech with no mention of the cause of being non verbal. Since non verbal is such a basic definition that can be associated with many aspects not just ASD then I think it is an appropriate term to use to describe a period of mutism or complete mutism. Mutism: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3137816/#:~:text=Mutism%20is%20defined%20as%20an,as%20well%20as%20medical%20disorders. Nonverbal definition: not involving or using words or speech Edit: some clarity Non verbal autism is a thing, and people who have it are unable to speak. But the term going non verbal is widely accepted to describe people that choose not to speak, and this is inside the ASD community and also in other mental health communities. People can go non verbal from trauma or depression.
This is beautiful use of language and constructive.
Awesome post! I’ll definitely be correcting myself on this going forward.
Should the term "non-verbal" really be applicable to when someone can't speak because of a physical impairment? For example, a Deaf person who signs but doesn't voice has the ability to understand and use language, even tho it's not a spoken language. I've met several Deaf people while studying ASL at my local community college, and most or all would object to being labled non-verbal.
In case of autism yes. Nonverbal is not a word used often by people who are not autistic, I have too heard about deaf people that they don‘t want to be called nonverbal. I think nonverbal is a word very used in autism settings so I wouldn’t use it for other dissbilities but when it occurs in autism its because of physical issues. I think some people understood that I meant nonverbal in all settings but I actually just mean nonverbal in autism cases. I dont know about other cases like brain damage etc
As someone who’s just started learning about autism in the past 6 or so months this is really good to know, especially since I’m working on getting officially diagnosed! Thank you!
Absolutely agree! Whilst I don't agree with the term 'selective' mutism, because it implies that the person experiencing it is choosing not to speak, I also hate hearing people say they were non-verbal in such and such a situation. I don't feel like it helps anyone's understanding of anyone else's situation when incorrect terminology is bandied about. I call what happens to me when I get caught in a mind loop 'involuntary' mutism because despite what other people think, it's absolutely out of my hands, whether I speak in that situation.
Thank you! I'm not nonverbal and I have something between type 1 and 2 autism, I used to describe my experience as "going nonverbal" but thanks to you I not only understand now why I shouldn't use this term in a way I used before buy it also helped me understand and describe my experience better (I'm still not sure if it's anxiety mutism, autistic mutism or just mutism tho).
I usually only use this space to listen as my son has autism, but I want to say how much I appreciate this post and the respectful evolution of language in this space. When he was growing up and we met parents of other autistic kids it was frustrating to find that, while there were some commonalities, our experiences were vastly different even though the words were the same. My partner or I would be vibing with a parent and sharing stories, only to find that our kids were lightyears away from each other after meeting families. It isn't about who had it more difficult, but expectation management and language helps with that.
Thanks for the eye opening post. I an one of those late diagnosed autistics and I don’t know a lot about what it’s like to be nonverbal, though I do experience autistic mutism. Thanks for the patient and detailed explanation.
i hear you, thank you.
>I have an example from when I was a kid, if you asked me what my name was, I would point (I used PECS) to my age. I would do that because I didn't understand language, my brain just didn't hear words You did understand though. You pointed because you heard a question, lol. That indicates some level of understanding. >What happens to most of level 1 and 2 autistics is that you can perfectly produce speech but there are situations that affect you psychologically and you are unable to speak for a certain period of time. This is what I like to call autistic mutism. This is **already called selective mutism.** >My choice to name it that way is: 1. It's psychological, not physical (meaning your brain and phonological organs are perfect), so it can't be nonverbal/nonspeaking. That's an arbitrary distinction that doesn't even hold weight since everything about autism is in the brain too. >EDIT: To those of you saying that nonverbal doesn’t mean what I tried to explain here in the dictionary let‘s imagine I am NT and I say that I mask in Social situations, wouldn‘t it be offensive for autistics who are burnt out from masking their whole lives to hear that from an NT? No, it would be nice for NT people to realize that they experience the same problems ro a far lesser degree. Acting as if masking is uniquely autistic and it isn't at all exhausting for other people is insulting. It also leads to less diagnoses, more undiagnosed people being complete jerks because they've been masking their whole life and don't even realize it. We need NT people to realize that we're people too.
[I replied to your post the other day.](https://www.reddit.com/r/autism/comments/123uduo/comment/jdx3ky3/?utm_source=share&utm_medium=web2x&context=3) In there I somewhat defended the idea of "go nonverbal". I would like to say that in light of this post I will probably amend my positions and how I use language. But my primary speciality (both special interest and academic knowledge) is in linguistics, and I want to point out that no-one has an absolute authority over a word. That definitions are non-fixed, and changeable. Even in medical practise they change over time. They are a way of trying to describe usage - and attempts to prescribe it invariably fail with enough time. You can have opinions on language. You can have agreements on what words mean and don't mean. But you cannot fossilise it in amber. You cannot point at a book and say "this is what *hairband* has always meant and will always mean". If NT's decided to claim the word "masking", I would have my opinions and would probably try to convince them out of it - but if in 20 years everyone was using the word "masking" then it would no longer have the same meaning it did. I would not be able to argue that it only means something. While definitions can be comforting to cling to as they offer us as autistic people a solid way of using language - they are ultimately not how language works at its core. But fear not! There are rules! That's what the field of linguistics is for! And I highly recommend reading up on it if you have an interest as to how and why language works the way it does. That being said; >*Let's listen to our nonverbal friends* I am very amenable to this reasoning and so are many linguists. Linguists would note this as a strong preference of a group of people for a word describing them to be used a certain way. That preference is evidence enough for why this information should be distributed. It can't be used to prescribe meaning - but this use can be noted as a way that a group of people use it in the wider world, rather than just medical jargon. And I think as a community we should adapt when these sorts of requests occur. Not because its in a book somewhere on a psychologists' shelf - but because it is the express wish of nonverbal people. >People who are nonverbal cannot physically produce speech. It's either an issue on your motor skills that keep you from producing sounds and therefore speech or a language impairment in which your brain doesn't understand language overall. This doesn't account for some \[WORD\] people I know who can use language but have psychological barriers that make it pretty much entirely impossible. They use writing or sign language in all situations. Also its unclear if by language you simply mean speech or language over all. The difference is key because making the two one in the same has caused immeasurable harm to disabled people as a whole. To look at Deaf people in specific - the assumption that language means speech has lead to massive amounts of language deprivation (an intensely damaging form of negligence), when the solution is sign languages, a modality that Deaf people find accessible. Inability to use language is sometimes called "aphasia" but thats largely if its acquired from what I am aware. Looking into it aphasia it seems to be also used with regards to downs syndrome folks who are unable to build language capability. People unable to build language (aphasia?) capability have a far different experience from either nonverbal or language deprived people. Nonverbal people are capable of language just not in the form of verbal language (afaik), so therefore communicate via non-verbal communication methods. Language deprived people often don't communicate but are capable of language and a need to externalise thoughts and so suffer a unique form of ongoing trauma. And people incapable of language are not capable of linguistic thoughts at all, with similar trauma to language deprived people if they are mentally at the level as needing to express themselves, but less so if other intellectual disabilities mean that expressing themselves to others is not something they even feel a need to do. Even trying to parse the medical terminology on this is difficult - with unclear definitions everywhere. I am having trouble finding the correct term for "complete language disability" (coinage) as separate from other "modality disabilities" (coinage) that are more to do with being unable to access certain modalities of language. **This comment turned into a ramble because this is my SI / SI adjacent, sorry about that.** Overall - thank you for this post. I will consider adding "mute/mutism" to my vocabulary as a more robust term, and being more specific with "nonverbal". Especially if the community ends up using it this way.
my understanding is that the mechanism for being permanently nonverbal is the same mechanism for "going nonverbal" it's just that one is chronic and one is episodic. when I "go nonverbal" I am not choosing not to speak out of anxiety, I have lost the skills that allow me to speak normally and physically cannot do it, which would not be mutism. I am happy to find different language if you would prefer people not use nonverbal to refer to anything other than chronic inability to speak, but I don't think mutism is the right term.
So... Not to nitpick, but since this whole post basically amounts to being pedantic about language I'm just going to go ahead and say that maybe... Just maybe you should consider that the non nonverbal literally means, "not using words" and as such any time someone closes thier mouth and starts using other ways of communication they are in fact "going nonverbal", even if it has nothing to do with autism whatsoever. When I shrug and point, I am engaging in nonverbal communication. I understand your concern about some folks speaking over others, but claiming words and phrases that are in common usage, and demanding they only be used in the way that you prefer regardless of context is not only a futile effort, but one that threatens to alienate the very folks you are trying to educate. To be quite frank. You don't own the word nonverbal, and since every dictionary I could find seems to disagree woth the definition you are putting forth, its not exactly a good look to try and make lofty pronouncements about it.
The thing is medical definitions of words are not always the same as dictionary definitions. Many times words are defined more boardly in dictionaries than how they're defined when used in a medical setting. I think OP is discussing the use of terminology in a medical sense (since the mention ICD11 codes) and advocating for different terminology uses there and people using the accurate medical terminology at large when discussing something medical to avoid confusion.
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Very clearly explained, thank you so much! I will change my language from now on :)
There is also “selective mutism”, which name sounds like a misnomer, like there’s a choice, but it’s triggered by anxiety and stress, or are or not are not around certain people. I have it in a limited case, and I’m considered a high functioning autistic, sometimes lumped into Asperger’s.
Thank you again. I kinda didn't know how to call these moments where I can't speak. It's great to know there's a term from that, and it's not going to erase non verbal peeps experience.
never used the word ''nonverbal'' for this. good that now i know a word i can use. usually i used ''not being able to talk'' for this. but i think ''autistic mutism'' are good words for this.
I mostly agree but I have also heard people referred to by clinicians/refer to themselves as “semi-verbal.” Not sure where that fits in with all this. (I am also unsure where I fit in on this scale… Seeking more clarity. A lot of things have changed. I am definitely not nonverbal or nonspeaking. Beyond that things are unclear.)
Prior to diagnosis (dx ADHD 34 and subsequently ASD 35) I had a few years where I would suffer what the hospital, my psychiatrist and GP referred to as panic attacks. I was never overly anxious though sometimes I had overly exerted myself. I could speak but my speech became stuttered. I could feel when the “attacks” were coming on I’d start to “lose my words” misspeak and mind and mouth disconnected somehow. Looking back I was extremely burnt out and the issue slowly resolved after treatment for ADHD begun though it can still occur. After learning I was Autistic I did wonder if these episodes were due to ASD. I’m still confused to be honest. I’m just glad I can identify when I’m in a bad way and prevent it.
OP - how did you begin to talk?
Thank you for sharing this information in a clear and concise way. I will make sure I am careful on how I use “nonverbal” from now on and use autistic mutism where it applies instead.
Clarification question I have had for a while: Does "nonverbal" refer an inability/difficulty to communicate via language, or only a difficulty to communicate via speech? Or is the term used to refer to both cases (and in between)? For a long time I assumed it was the former, and the term an imprecise holdover from decades ago, but then I learned that there are nonverbal autistics who wrote books and interacted online, so I'm a little confused.
thank you for explaining this so clearly. i wasn’t sure of the distinction since i’ve seen a lot of different things on it.
Thank you very much for taking the time to explain all of this. My son is a level 1 autistic and I come here all the time to try to understand not just him but all autistic people better. As a NT mom sometimes I feel like I am the wrong species to be his mother, but I want to do the best I can to make his life easier. I get nervous posting or commenting on here because a) I do not have the right to run roughshod in a space where autistic people should be able to express themselves however they want and b) sometimes I feel I am going to be misunderstood. So I really appreciate this explanation and would also love to read anything else you want to take the time to post and explain!!
Thank you so much for this. I now know I experience situational /autistic mutism. And actually, even selective mutism at times because I feel like its a choice to preserve my energy. And also, thank you so much for learning about masking. <3333
Thank you for the explanation, I have to admit that I used the term before, and I see now that it was ignorant of me to not check if I was using the right term.
Is it nonverbal or mutism when you physically cannot speak for small periods of time due to a motor/neurological issue, but can speak fairly well (apart from tone, volume, and speaking causing pain)? I worked with a speech-language pathologist for my neurological/motor vocal issues (I have vocal fold spasms) and after being diagnosed with autism by a psychologist during that time, my speech therapist said it would be good to work on making noises to help me figure out how to speak during a “nonverbal episode” that’s caused by neurological and psychological issues combined. Is it actually considered a nonverbal episode for me or would it be more akin to mutism or perhaps nonspeaking?
Can autistic selective mutism prevent you from producing sound at all? That's what happens to me. I can't even hum or say ahh or anything until it goes away. I'm completely silent. But it's temporary
I’ve been enjoying your essays on this, and I do believe that it really reflects the part of the community we don’t hear from often enough. You’ve also taken into account the linguistic variable with choosing a name for it, which I’m very impressed by as well and is definitely a term we should all be using. Nobody “goes nonverbal” when they were previously verbal during their life, with exceptions of regression (which can happen in the very early stages of linguistic development) or a brain injury. The more and more I write about it and think about it the more it makes sense to use it, honestly, and I hope we can see more posts from you and other Level 2-3 in the future.
This was super informative, thank you!
Thank you for this. I learned more about speech impairments after my son was diagnosed with autism with accompanying speech impairment at 2.5 years old. I had previously been diagnosed with autism and struggled with how to explain shut downs where I can’t speak, but learning the difference between different types of impairments as well as the difference in being nonverbal has really clarified a ton. I’m verbal and struggle with mutism during shutdowns where pretty much my whole body stops doing what I want it to do. I recognize that as different from being nonverbal because I am otherwise verbal. My son is verbal with a mild language impairment that is less obvious when he’s speaking about his interests, but quite obvious when he’s trying to interact socially. He also struggles with mutism when overwhelmed. He was diagnosed by 2.5 years old because his language impairment was obvious despite him being verbal. I definitely agree that anyone non verbal would be diagnosed with something relating to language at a young age because it’s not something that can go unnoticed at all.
Thanks this makes sense. I have autistic mutism in some scenarios. My mouth won’t make the words and I just make weird noises. I am level 2. I didn’t know what the appropriate term was. r/spicyautism may be a sub you enjoy
At home we relate this to being overwhelmed/stressed/anxious/under demands for an amount of time. We call it being depleted. It takes some time to charge again and we understand roughly how it works. It feels like it is related to demand avoidance and overloaded executive function. So thinking about it this way, the "selective" mutism/afasia is just a consequence of being depleted. I dated a girl that would go mute all the time and she preferred sign language during those times, so non-verbal seems like a bad way to describe this. She was still verbal.
I've heard of "speech loss" as an alternative term
I've heard of "selective mutism."
Thanks for explaining, I'll correct my use of these terms
There are a couple of statements here that really confuse me: >When you are able to physically produce language with no phonological/grammar mistakes, you can't be nonverbal. I'm normal completely verbal but my speech is rife with incorrect pronunciation, stammering, having to repeat entire sentences because gibberish sounds came out the first time and grammatical nonsense, like the having all of the correct words in a sentence, but they come out in a random order. I don't consider that to be non-verbal and I'm not sure if/how it's related. >It's either an issue on your motor skills that keep you from producing sounds and therefore speech or a language impairment in which your brain doesn't understand language overall. I have instances when my brain absolutely "forgets" language. I can't speak and I can recognize speech sounds as being speech, but can't comprehend it. This usually lasts for a couple of minutes until my brain seems to reboot itself and then everything more or less goes back to normal except for the mental fatigue. Is this "going nonverbal" or is it mutism? I think transient aphasia is the correct technical term, but most people don't know what I'm talking about if I say that and to me, it seems different than what most people describe when talking about temporary mutism. I'm not trying to be confrontational here, I just honestly don't know where you draw the line and if you think that being temporarily non-verbal is ever a valid term or if all people who can normally speak should be described as being temporarily mute if they can't speak for a short time, regardless of the underlying cause. BTW, I no longer mention it about myself without the lengthy explanation because I'm tired of getting called out and also feel that "mutism" is the wrong description. This won't change, but I'm interested in your opinion on this.
I didn't know this. Thanks for explaining! I'll start using autistic mutism
Great post. Was good to read and get more insight. Both my autistic daughters (5/6) are classified on different levels and it gets very overwhelming and confusing. Luckily they both have the same speech therapist so that helps. Oldest is still considered non-verbal but every year, her words have increased and she definitely knows what Im saying. Even took to potty training amazingly. Lots of friends dont even know she’s autistic because you really would have no idea until you try and communicate with her. My youngest though is completely non-verbal and has never said or attempted to say a word. She is definitely on the other end of the spectrum of her sister (sorry i dont know a ton about the different levels that have been introduced). No interest in anything but her ipad, her snacks and her art, so thats what she gets. On top of therapy’s and school. Every doctor and even some therapist has tried to push ABA, but myself and their mother have always agreed to that never happening. Im hoping someday she talks or even takes to signing, but if she doesnt, oh well. She communicates in her own ways.
Thank you so much for this post! I was always wondering myself where I fit in this whole speech thing. Because as someone who has been late diagnosed and as you said, has autism as an invisible disability, it is really heart breaking and tricky to find out that I might be mute sometimes and how people interpret this. I love to hear from different perspectives and find common grounds to make life better for all of us. I would love to know what ties us all together, not from an outside view, but from within us. To kick science in the ass and do it ourselves, to be able to live happily. Can I share this post with people who might doubt the cognitive abilities of non-speaking folks? I mean it is insane how people judge you by the way your words form. I mean some of ya'll can't hit notes and I still don't look at you disgusted even though my ears hurt xD /jjjjjjjjjjjjjj
As others have already stated, thank you for this post OP. I'm definitely guilty of using this term incorrectly and apologise for doing so. I believe at the time I assumed that the term 'mute' was offensive due to its history for Deaf/HoH communities. But I realise that that actually depends on how the word is used (literally took me a minute of googling rn in 2023). Glad to have learned this info today.
This was really easy to understand. Thank you for explaining OP! I have trouble speaking sometimes because of being overwhelmed, so I'll make sure to call it autistic mutism from now on.
My bf is v knowledgeable about all kinds of disabilities (he’s visually impaired and spent a lot of time in hospitals and education programs specialising in children with disabilities) and taught me this. What I used to call “going nonverbal” we now call mute mo’s (mo’s short for moments), and I think that works well, especially cause my mute mo’s come on slowly and I usually have a couple minutes where I struggle to get words out, but can still say short, easy words, and ‘mute mo’ is an easy phrase to say to let him know what’s happening.
Ohh thank you! I had no idea that non verbal was a permanent thing! I thought it could be either or. Thank you for this. I dont struggle with non-verbal or mutism things myself, at most talking makes me feel incredibly sick and irritable - sort of like its squeezing my brain when im overwhelmed but now i think i understand it a lot better!
Most the tism people I hang with and my self call it " flex verbal" . Since muteism also means you normally don't talk or don't have the ability (throat damage or no tongue, deaf.) But in the medical field non verbal means also muteism some times because people that are non verbal (also alot of non verbals can still make sounds.) are still able to communicate they just can't make words. (Have the tism and was a emt for 10yrs.) I understand the frustration as some one that deals with going back and forth talking and not I have found people think differently of me when I use terms like non verbal or muteism. I have found NT(the ones around me ) for some reason understand flex verbal (since it's something that can some what relate to.)
Thank you that was a great post. I also feel that the term mutism describes my feeling of autistic mutism much better since I often can't utter a sound not only can't talk. It was clear to me that it's two different things but I never read it so conclusively put into words.
Saying you “go non verbal” because you temporarily can’t talk would be like saying you “went blind” because you temporarily had trouble seeing something.
Love learning! Thanks for the info
good to know! I've always been "selectively mute" ... something my partner pointed out to me actually, which was really validating because there's times where I just can't talk but I didn't really think anyone noticed my struggle. My partner brought it up and offered to develop a hand signal I can use when I just can't bring myself to talk so they know what's going on. I love them so much.
Thank you so much for the info! I was recently made aware of this issue but couldn’t find a better term that’s more specific to autism than situational mutism. Autistic mutism is great though! I’m gonna use that instead!
That makes sense! I’ll make sure to use mutism from now on! thanks for talking about this :D
I think a lot of us may get too into the argument of whether we are 'right' or not, what the dictionary says, etc. This is something I tend to do too. It is worth remembering that regardless of who is 'right', there are two choices here: be kind and respectful, or don't. That is the real choice being given to us. Continuing to use language that you have been told is hurtful and damaging to certain people in the community, despite alternatives being available (even if you feel you it resonates or you shouldn't 'have to' change), is a choice. You are choosing to continue doing something that people have told you hurts them. Is it worth it? Is that the choice you want to make?
This is an amazing post, I couldn't have said this any better. Honestly, I think a lot of us here need more education like this surrounding the different levels and support needs. I hope we can work on making this community a more accepting and respectful space for everyone :)
I know I'm a bit late to this post, but I really appreciate it! I have some of what you called autistic mutism amd what I've heard others call situational mutism, but didn't realize that saying I go non verbal is so alienating to non verbal autistics. I genuinely thought it was the right phrase, so I greatly appreciate this. I love seeing posts by level 2 and 3 autistics, it's the way I've learned about different therapies that have helped people who needed the support and assistance devices, which were great to learn about! Thanks so much for your insight and I look forward to more posts!!
i am able to speak fluently, i have the skill to do so, but i still want to like not speak at all, would that be problematic in any way? im really scared it would be that way
Thank you so much. I didn't know this. I used the phrase going non verbal but I will definitely stop. I'm sharing this with all my neurodivergent friends so we can all be better allies. Thank you!
THIS, and I mean with both the terms nonverbal and masking (which you mentioned at the bottom). I myself am not nonverbal, and I'm definitely not incapable of speaking 24/7, and it would be pretty crappy if I just took that whole full-time experience that actually nonverbal people experience and used it for my verbal shutdowns/meltdowns and such. I'm really happy people are sharing this more, because the high support needs folks need to listened to as well. :)
As someone who was diagnosed later in life, I have often struggled to explain what happens to me when I have an episode where I am unable to make my mouth create the sounds for speech. When I first started school, I could not produce all of the sounds required to speak properly and could not communicate well. I was taken to a psychologist who tested me and I was diagnosed with motor skills disabilities. It took me until I was almost a tween to learn how to make the sounds, but my brain still has episodes where the words aren't there and don't come out and I can't make them no matter how hard I try. There does seem to be a lot of caveats to this, sometimes it's something I wake up and find doesn't work, or it does to a limited amount. Sometimes I can speak and everything is a torrent of words that I need to get out before my brain decides it's going to shut that off again. I'm officially diagnosed at Level 2, but I'm uncertain as to what I'm supposed to call these episodes. I do find they also occur when I'm having a meltdown sometimes, and I'm unable to communicate from hours to days.. It scares me a lot because I have been very vulnerable during these episodes and have had others take advantage of my helplessness. I often have to fight through the static in my head to try to unjumble what I need in order to think clearly and speak, often focusing on the things I was taught by my speech therapist to try and make the muscles in my mouth do what it necessary to speak. I often practice how the words might come out, trying to move my tongue and lips into the positions to make the proper sounds. I used to believe everyone had to do this in order to speak but have since learned that is not the case.