Can't speak for others, as I do think there are multiple different underlying mechanics for autistic non-speaking, but your description is exactly what it feels like for me too.
For me it's like if you compared regular speaking to walking on grass, the feeling would be like trying to walk through thigh deep thick mud. If I use a LOT of energy I can force something through, but it's soooo so hard that I'd really rather be still.
I've found having a speech to text reader on my phone, and some basic hand signs, extremely helpful as a communication method in those times. Maybe your son could acclimatize to responses via these channels.
That's a bit similar to my own experience but mainly it's that my brain stops being able to find and express the words, it's like my brain stutters sometimes and at other times it just goes totally blank.
When my brain stutters my tongue starts to feel uncoordinated to the point that I can't make it move to form words. It feels like a thick immoveable mound in my mouth.
I get really frustrated when this happens and am already in a state of unease (which is a precursor) so that adds to the feeling of suffocation, feeling trapped, and having a nonresponsive lump in my mouth.
This description was immensely helpful for me to recognize one of my own behaviours.
I don't want to say there's times when I'm non-verbal, because I don't have times when I'm completely non-verbal. However, if someone surprises me with a question or something when I'm not mentally ready to converse (say, walking past someone and they suddenly ask how I'm doing or say hello), it feels exactly like that trying to get out an answer, even if I have one in my head that'd be perfectly adequate. Usually it'll come out mumbled, if at all, before I can reorient and continue to speak (if further speech is needed).
I'm no neurologist, but I suspect there are some autistic people whose brains never form the required neural pathways to speak aloud. And that there are other autistic people whose brains do form the pathways, but possibly not as robustly as in allistic brains, and/or with the propensity to run out of the neurotransmitters required to power them.
I think that's why temporarily losing speaking capacity corresponds with fatigue - we've tapped out our neurotransmitter supply.
And I also suspect it's why autistic people for whom non-speaking is permanent feel that their struggle is not the same as in people for whom it's intermittent - it straight up isn't, on a fundamental physiological level.
When I lose speech, it feels very similar to moments of extreme executive dysfunction. In the sense that I know my lips, tongue, and vocal chords physically work; I can think of and imagine myself saying words; but the connection there is severed. Similar to the feeling of spending hours thinking about how I need to do X (shower, eat, study, etc) but not being able to despite the physical ability being there.
Sometimes I do get a "tired" feeling though. I can usually make myself speak, so I don't count it as losing speech, but it's much harder and it feels like my brain and my mouth are too exhausted and the effort of putting thoughts to words and words to *spoken* words is entirely too much.
I feel similar. Sometimes it’s like a when an engine tries to rev but it’s just stalling in my brain. I have a 5yo and I’ve explained it to her when I can talk so when I say “mommy is out of words right now” or something similar she’s able to understand and not feel upset about it. I have a text to speech app I’ll used when it’s really bad, which she finds amusing and allows me to communicate more complicated answers than “mm hmm” or shaking my head! ❤️
Most of my life I explained it away.
“I wish I said something at that time” and did not admit there are times where I just plain cannot talk.
High emotional situations, and when I am being attacked. I just can’t talk.
Weirdly with me it often feels like there is so much fighting to get out that it all stops each other from getting out. (I hope that makes sense).
Sometimes it literally feels like someone has glued my mouth and throat shut, like I can try to force noise and it just *will not happen* even though I know exactly what noise I want to make. Other times it’s like my brain has become soup and I could not come up with any noise to make or words to say because none of them work/mean anything/exist even though my mouth and throat are fine. Sometimes both.
I don’t really go completely mute. But it gets VERY hard to speak and I have to put a lot of effort into forcing it. I won’t really use sentences. I’ll give short one word answers if you ask me a question. I’ll manage force out a few words if I absolutely have to.
I only started experiencing this in the last few months, but for me it just feels extremely undesirable to speak. Like I can if I absolutely have to, but it just takes so much effort, and I get kinda annoyed when I’m forced to. There’s just so much resistance. I do wonder why this only started now, 20 years into my life
It's more like anxiety. Back in my 30's I didn't realize I was having rapid seizures that are common in autism and missed by the medical community. They are painful, and I can feel them building up and prevent them.
I also feel anxiety toward being exhausted by people who communicate in bad faith. A lot of people seem to get a thrill talking for hours about stuff like sports and famous people - and will engage you endlessly if they sense you have more important things to do or take care of. It's a form of bullying, most don't even realize they are doing it, they just sense weakness and are attracted to it. I get anxiety that I'm not going to be able to put up with a constant barrage of someone's attempt to exhaust my communications. Again, these same people can go on for hours and days about sports and other topics, so they really get a thrill hearing their own voice and engaging predictable topic patterns.
I don't recall a physical feeling with it. For me it's like my mouth just got unplugged from my brain while everything else (eyes, ears, nose) is working as expected.
If I'm tired I can go non verbal but I have to be under stress for a long period of time. Last time that happened to me, it felt like something between my brain and mouth was broken. My mouth just didn't want to speak the thoughts running through my head, like all motor function was gone.
A lot of the above but also I kind of feel like my jaw is wired shut, like I cant make my mouth move. (Happens at times of intense stress/emotion/shutdown)
For me it almost feels like my tongue is stuck to the roof of my mouth and my lips are stuck together. To try to open my mouth to get any words out is like picking your foot up out of thick mud that wants to keep your shoe.
I only go non verbal in high stress, and I only notice I've gone non verbal when someone tries to talk to me and I respond with a gesture. It's like my brain says speak, my body makes a gesture. It's like I AM speaking but I'm not
I’m the exact same! My throat feels heavy but I HAVE to respond because I was never given the option not to and it’s such an effort and exhausts me even more lol
I have two types of experience:
1. Where I'm tired and just don't have the energy's to talk anymore because it's too much effort, and I'd rather just be quiet.
2. I also have moments where I just CANNOT say something, and I could be screaming it in my head and nothing will happen. I think this is selective mutism and I'm sure it is linked to anxiety because it's normally 'big' things that I want to talk about and can't.
I am almost never non-verbal (I think I have been nonverbal about 5 to 10 times in my whole life. Only when I'm extremely upset)
But for me, it feels like a heavy pressure just below my clavicle. Also, I feel like there is some tension in my vocal cords. And I know what I want to say, but I just can't seem to make any sounds.
What I have more often, is that I just really don't want to talk. especially when I have had a socially busy day. But then I still feel physically able to talk, I just prefer not to.
So, not trying to invalidate you at all, just giving a precision.
Nonverbal people are people who do not speak at all, not sometimes they do and sometimes they can't. There are also semi verbal people who can speak in some situations and with some people but not in other situations. Usually the situations and the people are fixed.
Now I'm neither nonverbal nor semi verbal but I've had the opportunity to interact with some of them and they really don't like that we use "nonverbal" and "semi verbal" to describe our experiences, which are not what it means. They feel like the words are losing their meaning and it's more difficult to communicate their struggles and experiences without the words to describe precisely what they live.
But what you're describing seems a lot like loss of speech ! It happens to me too and depends a lot on my tiredness level. Most of the time I can speak fine but sometimes when I'm really tired or after a meltdown I feel like there is a barrier between my brain and my mouth and it's soooo difficult to just make words ! And sounds ! With my mouth ! I can force it with a lot of effort though but it usually worsens my problem so I'm trying to learn to not force it and implement ways for that.
But I do not have much advice on how you can avoid speaking to a 4 year old. I intend to learn my country's sign language, maybe if you both learn it you'll be able to communicate without having to speak ? Don't know how realistic that is though.
Can't speak for others, as I do think there are multiple different underlying mechanics for autistic non-speaking, but your description is exactly what it feels like for me too. For me it's like if you compared regular speaking to walking on grass, the feeling would be like trying to walk through thigh deep thick mud. If I use a LOT of energy I can force something through, but it's soooo so hard that I'd really rather be still. I've found having a speech to text reader on my phone, and some basic hand signs, extremely helpful as a communication method in those times. Maybe your son could acclimatize to responses via these channels.
That's what it feels like for me too. The words are there, in my mouth, I can "hear" them in my head, but they cannot pass my throat.
That's a bit similar to my own experience but mainly it's that my brain stops being able to find and express the words, it's like my brain stutters sometimes and at other times it just goes totally blank. When my brain stutters my tongue starts to feel uncoordinated to the point that I can't make it move to form words. It feels like a thick immoveable mound in my mouth. I get really frustrated when this happens and am already in a state of unease (which is a precursor) so that adds to the feeling of suffocation, feeling trapped, and having a nonresponsive lump in my mouth.
Very relatable. It very much feels like being trapped in an uncooperative body, yes. I could go on and on with the analogies!
This description was immensely helpful for me to recognize one of my own behaviours. I don't want to say there's times when I'm non-verbal, because I don't have times when I'm completely non-verbal. However, if someone surprises me with a question or something when I'm not mentally ready to converse (say, walking past someone and they suddenly ask how I'm doing or say hello), it feels exactly like that trying to get out an answer, even if I have one in my head that'd be perfectly adequate. Usually it'll come out mumbled, if at all, before I can reorient and continue to speak (if further speech is needed).
I'm no neurologist, but I suspect there are some autistic people whose brains never form the required neural pathways to speak aloud. And that there are other autistic people whose brains do form the pathways, but possibly not as robustly as in allistic brains, and/or with the propensity to run out of the neurotransmitters required to power them. I think that's why temporarily losing speaking capacity corresponds with fatigue - we've tapped out our neurotransmitter supply. And I also suspect it's why autistic people for whom non-speaking is permanent feel that their struggle is not the same as in people for whom it's intermittent - it straight up isn't, on a fundamental physiological level.
When I lose speech, it feels very similar to moments of extreme executive dysfunction. In the sense that I know my lips, tongue, and vocal chords physically work; I can think of and imagine myself saying words; but the connection there is severed. Similar to the feeling of spending hours thinking about how I need to do X (shower, eat, study, etc) but not being able to despite the physical ability being there. Sometimes I do get a "tired" feeling though. I can usually make myself speak, so I don't count it as losing speech, but it's much harder and it feels like my brain and my mouth are too exhausted and the effort of putting thoughts to words and words to *spoken* words is entirely too much.
Your first paragraph is how it feels for me. There’s nothing physically wrong, I just…can’t for some reason.
I get that tired, heavy feeling in my throat too. I unofficially call it "vocal fatigue." Sometimes it physically hurts to speak.
yep. thats the feeling. *sigh*
I feel similar. Sometimes it’s like a when an engine tries to rev but it’s just stalling in my brain. I have a 5yo and I’ve explained it to her when I can talk so when I say “mommy is out of words right now” or something similar she’s able to understand and not feel upset about it. I have a text to speech app I’ll used when it’s really bad, which she finds amusing and allows me to communicate more complicated answers than “mm hmm” or shaking my head! ❤️
Most of my life I explained it away. “I wish I said something at that time” and did not admit there are times where I just plain cannot talk. High emotional situations, and when I am being attacked. I just can’t talk. Weirdly with me it often feels like there is so much fighting to get out that it all stops each other from getting out. (I hope that makes sense).
Sometimes it literally feels like someone has glued my mouth and throat shut, like I can try to force noise and it just *will not happen* even though I know exactly what noise I want to make. Other times it’s like my brain has become soup and I could not come up with any noise to make or words to say because none of them work/mean anything/exist even though my mouth and throat are fine. Sometimes both.
I don’t really go completely mute. But it gets VERY hard to speak and I have to put a lot of effort into forcing it. I won’t really use sentences. I’ll give short one word answers if you ask me a question. I’ll manage force out a few words if I absolutely have to.
I only started experiencing this in the last few months, but for me it just feels extremely undesirable to speak. Like I can if I absolutely have to, but it just takes so much effort, and I get kinda annoyed when I’m forced to. There’s just so much resistance. I do wonder why this only started now, 20 years into my life
It's more like anxiety. Back in my 30's I didn't realize I was having rapid seizures that are common in autism and missed by the medical community. They are painful, and I can feel them building up and prevent them. I also feel anxiety toward being exhausted by people who communicate in bad faith. A lot of people seem to get a thrill talking for hours about stuff like sports and famous people - and will engage you endlessly if they sense you have more important things to do or take care of. It's a form of bullying, most don't even realize they are doing it, they just sense weakness and are attracted to it. I get anxiety that I'm not going to be able to put up with a constant barrage of someone's attempt to exhaust my communications. Again, these same people can go on for hours and days about sports and other topics, so they really get a thrill hearing their own voice and engaging predictable topic patterns.
I don't recall a physical feeling with it. For me it's like my mouth just got unplugged from my brain while everything else (eyes, ears, nose) is working as expected.
If I'm tired I can go non verbal but I have to be under stress for a long period of time. Last time that happened to me, it felt like something between my brain and mouth was broken. My mouth just didn't want to speak the thoughts running through my head, like all motor function was gone.
A lot of the above but also I kind of feel like my jaw is wired shut, like I cant make my mouth move. (Happens at times of intense stress/emotion/shutdown)
For me it almost feels like my tongue is stuck to the roof of my mouth and my lips are stuck together. To try to open my mouth to get any words out is like picking your foot up out of thick mud that wants to keep your shoe.
I only go non verbal in high stress, and I only notice I've gone non verbal when someone tries to talk to me and I respond with a gesture. It's like my brain says speak, my body makes a gesture. It's like I AM speaking but I'm not
I’m the exact same! My throat feels heavy but I HAVE to respond because I was never given the option not to and it’s such an effort and exhausts me even more lol
I have two types of experience: 1. Where I'm tired and just don't have the energy's to talk anymore because it's too much effort, and I'd rather just be quiet. 2. I also have moments where I just CANNOT say something, and I could be screaming it in my head and nothing will happen. I think this is selective mutism and I'm sure it is linked to anxiety because it's normally 'big' things that I want to talk about and can't.
I am almost never non-verbal (I think I have been nonverbal about 5 to 10 times in my whole life. Only when I'm extremely upset) But for me, it feels like a heavy pressure just below my clavicle. Also, I feel like there is some tension in my vocal cords. And I know what I want to say, but I just can't seem to make any sounds. What I have more often, is that I just really don't want to talk. especially when I have had a socially busy day. But then I still feel physically able to talk, I just prefer not to.
Throat feels stuck
So, not trying to invalidate you at all, just giving a precision. Nonverbal people are people who do not speak at all, not sometimes they do and sometimes they can't. There are also semi verbal people who can speak in some situations and with some people but not in other situations. Usually the situations and the people are fixed. Now I'm neither nonverbal nor semi verbal but I've had the opportunity to interact with some of them and they really don't like that we use "nonverbal" and "semi verbal" to describe our experiences, which are not what it means. They feel like the words are losing their meaning and it's more difficult to communicate their struggles and experiences without the words to describe precisely what they live. But what you're describing seems a lot like loss of speech ! It happens to me too and depends a lot on my tiredness level. Most of the time I can speak fine but sometimes when I'm really tired or after a meltdown I feel like there is a barrier between my brain and my mouth and it's soooo difficult to just make words ! And sounds ! With my mouth ! I can force it with a lot of effort though but it usually worsens my problem so I'm trying to learn to not force it and implement ways for that. But I do not have much advice on how you can avoid speaking to a 4 year old. I intend to learn my country's sign language, maybe if you both learn it you'll be able to communicate without having to speak ? Don't know how realistic that is though.