Why non-verbal?

[boymom247]

I have trouble with verbal communication - I can crank out vague platitudes on cue, and verbalize anything I can mentally rehearse, but communicating in real time, unrehearsed, or spontaneously responding to changing conversational ebb & flow causes anxiety and verbal sputtering.

I can write just fine, though.

I think (maybe?) this comes from a deeply embedded fear of screwing up, and appearing to be an idiot.

Maybe trying alternate forms of communication might help (?).

I went through the same exact thing for years, though mine was due to depression and anxiety. I think there are lots of us who would prefer to go mute and just write out our thoughts.
We are starting speech therapy tomorrow, so I'm looking forward to seeing him find his preferred method of communication, be it speaking, flash cards or sign language.

 

[Ella Spell]

Stuff like this:

I don't want people to know what I'm thinking or feeling because I'm private.

I don't want to address my own emotions because of Alexithymia.

Their emotional response will be overwhelming to me because of Alexithymia.

I have an auditory processing delay so I can't speak / listen in real time.

It takes days for me to process what I've heard, before I can reply.

Speech is physically exhausting, just moving my mouth.

I hate having people look at me when I speak.

I don't want to deal with using correct facial expressions, tone, or volume.

I don't want to have to interpret theirs in response.

I'm so lost in thought I never know what to say anyway.

My thoughts aren't linear so they never make sense to people.

When I do speak, people always ask me to repeat myself.


* I was dx with mutism as a child in the 1970s and I went to speech therapy at school.
I've gone back to SLP therapy after my first stroke in 2015, and again in 2020 for mutism.

 

[TBRS1]

I went through the same exact thing for years, though mine was due to depression and anxiety. I think there are lots of us who would prefer to go mute and just write out our thoughts.
We are starting speech therapy tomorrow, so I'm looking forward to seeing him find his preferred method of communication, be it speaking, flash cards or sign language.

I think that your personal experience with anxiety and depression can help you understand what might be going on.

In my experience, anxiety and depression are common issues for ASD folks, and cause at least some of the communication issues.

 

[boymom247]

From what I understand, being non-verbal could be related to cognitive difficulties or slow processing, or some kind of neurological impairment, or sensory processing difficulties.
Another cause is selective mutism. This is anxiety-related, and often related to the environment or a bad experience - bullying at school, for example. So if the cause is selective mutism, try to see what could be the cause, what could be causing, or have caused, anxiety. Try, as far as possible, to make sure the child is kept in a calm environment.
Either way, (not saying that you don't, just general suggestions) you can help by showing patience and understanding, and never assume that because they don't speak, it means that they didn't hear or understand what you said. Don't change the way you relate to the person in any way. Talk to them, not about them.

Sometimes, children can find speaking too direct and might need a medium through which to communicate. I've heard of non-verbal children start to communicate through a pet or a video camera, or through Thomas the Tank Engine, or whatever it is they are into. Or by talking on a phone even, something that allows them to communicate, but is not too direct and overwhelming for them.

One cause of my not being able to speak on a few occasions is being overwhelmed or overloaded by a situation, or environment.

This all lines up with much of the research I've done and things I've found online. Insanely interesting but also scary for a mama who has all the best intentions but don't want to subject my son to unwanted, overwhelming stimuli when he seems perfectly content without verbally communicating 98% of the time.
When he wants something, he usually shows me, but lately we have had quite a few changes and I can clearly see he is frustrated when unable to communicate with me. He says things I don't understand (mispronounced words? JibberJabber?) through tears, then finally calms down and goes back to not trying to speak, so I'm sure it's a daunting task that doesn't seem to have much value when it's provided no results so far.

 

[Ella Spell]

My SLP always wants to send me to a psychologist.
My psychologist says it's an SLP thing.

Rinse and repeat.

 

[boymom247]

Stuff like this:

I don't want people to know what I'm thinking or feeling because I'm private.

I don't want to address my own emotions because of Alexithymia.

Their emotional response will be overwhelming to me because of Alexithymia.

I have an auditory processing delay so I can't speak / listen in real time.

It takes days for me to process what I've heard, before I can reply.

Speech is physically exhausting, just moving my mouth.

I hate having people look at me when I speak.

I don't want to deal with using correct facial expressions, tone, or volume.

I don't want to have to interpret theirs in response.

I'm so lost in thought I never know what to say anyway.

My thoughts aren't linear so they never make sense to people.

When I do speak, people always ask me to repeat myself.


* I was dx with mutism as a child in the 1970s and I went to speech therapy at school.
I've gone back to SLP therapy after my first stroke in 2015, and again in 2020 for mutism.

I'm not even autistic and there was a time I could relate to all of that, and still can at times.. this is exactly why I asked and what I need to hear.. so informative, thank you so much

 

[boymom247]

Can only speak for me. But, I was happy enough not speaking and just watching people.
Words didn’t hold much significance for me.
Mommy was mommy. Daddy was daddy. Grandmother was grandmother.
Nothing more was needed to be known than that. It was all I needed to know. Speech was a secondary task. Something I just did because they asked. Not because I needed to speak.

This was my first assumption, and what I often found to be true when I looked into it online. Perfect explanation, thank you!!

 

[boymom247]

I think that your personal experience with anxiety and depression can help you understand what might be going on.

In my experience, anxiety and depression are common issues for ASD folks, and cause at least some of the communication issues.

As much as I hate the thought of anyone going through that, much less my son, at least I can relate and recognize some things when they're happening... Hopefully what helped me, might help him at well..

 

[Ella Spell]

My son is an adult now and he's undx ASD. He can be extremely pedantic and articulate in a little professor way. Actually he's in grad school to be a prof. When he's not on a rant about something academic he barely speaks at all. We can go days without speaking, in the same house, and most of our conversations are electronic.

I wouldn't say he's mute or selective mute but he doesn't find value in verbal conversation unless it's something really compelling, at which times he'll infodump so much that I zone out.

My dad had a speech impediment and he barely ever spoke either. He left school very young because the other kids bullied him for it.

 

[CountryGirl]

Oh man I hate how that must have made you feel as a child!! ... What got you to start speaking?

i was very content in my own world and didnt really have many feelings

i dont really know what got me talking i suppose i just started to speak a few words maybe from school where i went part time

i went to an institution after that where i only came home during school holidays and i was articulate by then but turned from the sweet silent child to an angry verbal adolescent

 

[boymom247]

Everyone is different but always remember that there is light at the end of the tunnel of raising a profoundly autistic child.

My nephew is 32 years old, diagnosed with autism about age 2, and cannot "volunteer" words. I don't what else to call it. He knows words and what they mean but he cannot just pull them out of his brain, string them together in a sentence, or voluntarily use them to express himself. He can ace true/false and multiple-choice written questions, but he can't do fill-in-the-blank tests without a list of potential words to fill in the blanks. He cannot write an essay as is required to get his GED.

He expressed himself with echolalia when he was young, and he still does that to some extent now. He has always been able to perfectly mimic the voices and recite verbatim the dialogue of Sesame Street characters and the Muppets. When he was young, I realized that he would recite dialogues from the Muppets to answer questions and to express emotions that he was feeling. I think he is so smart that he figured out to communicate that way because he cannot just voluntarily speak words or sentences. He sometimes sings hymns at church in the voices of various Muppets. He is confused by pronouns, not understanding when to use her, him, she, he, they, mine, our, yours, you, etc. For example, I recently asked him "when is your birthday?" He looked confused and pointed at me, like asking me if I was asking him when is MY birthday, and I had to point at him as say, no, when is YOUR birthday, not MY birthday. He then understood and told me the day, day of the week, the year and the exact time of day he was born. I suppose he's seen his birth certificate at some point.

I think he has some disconnection in his brain when it comes to processing language. But despite those problems, he is a most wonderful person and companion, and he knows that I don't care if he speaks or not. We have always been able to communicate sufficiently to do most things although our type of communication is very different from other people's. I love him dearly just as he is.

With patience and loving support, your son will find his voice, whatever it may be, on

How beautifully written, I love the picture you painted and imagine my son and I having similar conversations as he grows. I also tell him every day, several times a day, that I love him and wouldn't change a thing about him. And that's the truth!! The reason I'm worried about him not speaking right now is because he is approaching school age and I'm terrified at the thought of taking him to school when he is unable to tell me if something happens.
We are starting speech therapy tomorrow, so I'm hoping we can find a way to communicate before he starts school.
Thank you for sharing your beautiful story

 

[Neonatal RRT]

I've done some research and have come across a few answers, but I'd love to hear from you..
My 3 year old son is non-verbal. Though he still speaks... He recited his ABC's, phonetics, counts backwards, labels colors and lots of other random things, but he won't talk TO anyone. No meaningful conversations, no responses to questions, no conveying wants or needs (verbally), etc. My question is, WHY won't he speak to me or anyone else?

I am probably less verbal now than when I was a child. I often look at my wife or my co-workers and uncomfortably, and literally, cannot create a thought in my head as to what to say. Sometimes, if the mood strikes me, I might make some feeble attempt at small talk, the weather, whatever, but this takes a conscious effort that I don't often make. On the other hand, if it is something I am interested in, I can literally lecture you for 6-8 hours. I am a part-time university instructor and will have classes from 8am to 5pm. I am an instructor at the hospital, as well. However, to sit there in a work break room, at a restaurant table with a group of people, to enjoying a relaxing weekend at the family cottage, to sitting on the couch with my wife,...I am pretty much non-verbal. Believe me, my internal monologue is quite active, but to jump in and out of a conversation, I literally can't start one or interact in that setting. I almost always need someone else to prompt me, and then I can speak. Furthermore, people, in general do not interest me. I don't talk about people, in general. Don't ask me how I feel, because I couldn't tell you (alexithymia). I am interested in things and ideas and how things work, and most people I interact with are not, so why put myself and them through that?

I go back to the term "autism", which in Greek, means "auto" or "self". It accurately describes the social experience. I've also heard people describe the social experience as being trapped in a glass box. You can hear and see the conversation, but cannot participate in it in any sort of meaningful way. Either way, to varying extents, this is true. I will often describe the experience as being an "alien observer", you can be part of the social experience, but mostly as an observer, and often cannot participate. You're on the periphery, there, but not there, and because you are an "alien", you might not understand or can relate to the conversation. It is marginalizing, isolating, even lonely.

 

[vergil96]

how a person who presumably knows how to talk doesn't say the words with their tongue and vocal cords

Well, the "drivers" are not always there.

Does their autism make them unable to move their tongue and lips to vocalise words?

Basically yes + it's like you were looking for a word in a messy drawer and couldn't find it. I tend to not think verbally as well, so grammar, syntax, getting words in the right order, using filler and structure words - it's a lot of work. In writing you both have more time and you can leave something blank or replace a word later when it comes to your mind - words like to get lost and appear too late. I obviously can talk, I know a couple of languages, but sometimes I'm too overwhelmed and the whole process of speaking has multiple bottlenecks.

Apart from this several people in my family started to speak at the age of 5 and... it doesn't have to be something to worry about. All of them grew up to be successful IT professionals and engineers, have families etc. It seems like nobody really bothered, because the whole family is a bit like that... coming home and pointing fingers at things and saying "that" instead of full sentences or constructing something completely against grammar, using confusing wording. While being very successful in life in general. Or a common saying in my family is "maybe the child has nothing interesting to say", because the children seem to suddlenly speak when... something that matters to them is going on. I can relate to that, because I can only listen during a social meeting and be so disinterested that I find it hard to stay focused on the conversation until the conversation reaches an interesting subject. And most adults in my family are also like that. Then about the subject of interest they talk a lot.

I have trouble with verbal communication - I can crank out vague platitudes on cue, and verbalize anything I can mentally rehearse, but communicating in real time, unrehearsed, or spontaneously responding to changing conversational ebb & flow causes anxiety and verbal sputtering.

I can write just fine, though.

I think (maybe?) this comes from a deeply embedded fear of screwing up, and appearing to be an idiot.

Same. Therapist encourages me to speak even when I feel like I will stumble upon my own words, it makes me feel like an idiot. Mind you - I'm far from being an idiot in any sense, I graduated computer science standing out at the university in a positive way, know a few languages, and the such. But it feels idiotic to mumble something incomprehensible and hang up not being able to recall quickly what the name of something is.

Maybe trying alternate forms of communication might help (?).

When it comes to a child, pointing fingers and using gestures go a long way.

 

[ra49]

This all lines up with much of the research I've done and things I've found online. Insanely interesting but also scary for a mama who has all the best intentions but don't want to subject my son to unwanted, overwhelming stimuli when he seems perfectly content without verbally communicating 98% of the time.
When he wants something, he usually shows me, but lately we have had quite a few changes and I can clearly see he is frustrated when unable to communicate with me. He says things I don't understand (mispronounced words? JibberJabber?) through tears, then finally calms down and goes back to not trying to speak, so I'm sure it's a daunting task that doesn't seem to have much value when it's provided no results so far.

Boymom247, good luck that therapy and your devoted heart will help your boy <3

 

[Misty Avich]

.


Basically yes + it's like you were looking for a word in a messy drawer and couldn't find it. I tend to not think verbally as well, so grammar, syntax, getting words in the right order, using filler and structure words - it's a lot of work. In writing you both have more time and you can leave something blank or replace a word later when it comes to your mind - words like to get lost and appear too late. I obviously can talk, I know a couple of languages, but sometimes I'm too overwhelmed and the whole process of speaking has multiple bottlenecks.

Interesting, but I've seen videos on YouTube of someone asking a non-verbal autistic person a simple yes or no question and they quickly tapped in yes or no on their keyboard without looking like they were thinking about it. What stops them from saying yes or no, or even shaking their head or nodding?

 

[Ella Spell]

I'm not nonspeaking because I can physically do it, but it's physically tiring. I don't want to make facial expressions because they all have to be fake and forced, which means I'm consciously aware of every muscle movement in addition to planning all those movements cognitively. Moving my mouth is tiring. It just is. It's no different than if I needed to lift something repeatedly using the muscles in my hand. I actually am tongue-tied, physically, so that makes it even more work. The eye contact thing is a no-go for me. I don't even fake eye contact with people. I forget that I'm supposed to, but even if I remembered I wouldn't be comfortable. Most of the time I don't face people at all when one of us is speaking. Sometimes I'll turn my whole body away or even start walking away while talking. Then I'm always told that I'm mumbling or they couldn't hear me, or I get chastised for my offensive body language by turning away from them. I speak up so they can hear but then it sounds like I'm shouting, which I kind of would be, because I'm irritated at having to repeat myself.

The worst part is my processing delay which means I don't know what to say and can't formulate responses in real time. For example I was at my vet today and I just deciphered what he meant and what I should have said, now. That means I should ring him with the info but I'm scared of making phone calls so that won't happen. Now my dog will suffer as a result. Most of the time I just email his receptionist instead of using the phone, but she was off today.

I have ADHD and my thoughts are so fast I can't slow them down to put them in order or at the right pace for other people to follow. I also think in a weird way because of synaesthesia so I say a lot of non-sequitors and that bothers people. They're always asking me "What made you think of that?!" which is annoying.

Oh, then there's my accent. I have a British accent mixed with a Boston drawl so no one can understand me unless I over-enunciate, which makes me sound like a pedant or a snob. I already look like a snob when I don't smile or make eye contact, so that's one more thing to cause me anxiety.

I'm worse at speaking to my friends / family than I am with strangers. Friends and family expect emotional output and access to my thoughts or feelings. Again, they expect it in real time. I don't share my emotions or make myself vulnerable unless I really have to, like with my partner. I can joke around with my daughter and I'm kind of chatty with her, but I very seldom speak to my son and I don't (can't) even say hello to my mother when I see her. I just shut down and turn to a lump of cement. I can't move my mouth or smile when I'm with her. No, I don't hate her. It's just the way it is. It's involuntary. Speaking to strangers is easier because it's usually more superficial and functional, with less emotion or significance involved.

The whole process of verbal speech is a nightmare to me.

 

[vergil96]

Interesting, but I've seen videos on YouTube of someone asking a non-verbal autistic person a simple yes or no question and they quickly tapped in yes or no on their keyboard without looking like they were thinking about it. What stops them from saying yes or no, or even shaking their head or nodding?

What I have described - sensory processing issues. It's a whole process. Say, you have to describe a room you're in. There are multiple stages in how that happens. The information goes in through your eyes, you register objects and spatial relationships, colours etc. Then you have to match the objects to words. Then you have to construct a grammatically correct sentence and add helper words. Then you have to move certain muscles to speak when you have it all planned out already. At all of these stages, something can go wrong and it does - even in all of them for me when I'm exhausted. It's a non-obvious, demanding process. With a "click yes or no" scenario, the path to getting the information out is much shorter as it requires only moving your finger. It's similar to dyspraxia - when some people can't learn e.g. how to swim or tie shoes, some signals are coordinated in a way that makes it hard to do these things. It's like you had a camera that allows you to see in the dark, but is useless during the day or vice versa. Certain things are set up in the brain such that speaking is being made a complex task that requires a lot of effort.

 

[Ella Spell]

That's a good point about sensory. Another reason I don't speak is that I don't like listening. Sure I care what people are saying but I have misophonia, and repetitive sounds put me in panic mode. Human voices are among the worst triggers for me because they can go on and on, and I have to focus intently because of my processing delay. It's actually an auditory-visual delay which means I can only learn / understand by reading rather than by listening or watching videos. I like my environment to be dead silent, or as much as possible given the fact I have tinnitus which leaves me with an overstimulated nervous system 24/7. Adding other people's speech to it can push me over the edge with sensory overload.

 

[Misty Avich]

I've never really had to consciously think about speech like how some people here are describing. Facial expressions also come naturally to me. If I feel a certain emotion it sets my face to that emotion. One time when I had a bad scratch on my forehead (from an accident, I don't self-harm) it kept hurting whenever I made certain facial expressions while talking or listening. I tried to concentrate on not making facial expressions on the forehead area but I couldn't help it.
Also when I had bad bouts of vertigo a few months ago, I had to keep my eyes still, but because I was with some people in a restaurant I automatically kept moving my eyes to make eye contact as they spoke, which then made the vertigo worse. I realised how subconscious my eye contact and facial expressions normally are. Also I speak like any average NT and automatically know how to word my sentences and all that, which is a skill I learnt in toddlerhood. I was as articulate as my peers growing up.

This is why I strongly believe in functioning levels. It boils down more to social functioning levels, not intellectual (a non-verbal low-functioning autistic can be more intelligent than me regarding logical skills or reading, for example). I've always been high-functioning, even during the worst meltdowns I've had I'm still naturally able to speak articulately...even though it's shouting and swearing lol. During meltdowns I was argumentative with my loved ones, and a whole load of words would come as a crescendo out of my mouth.

Often I find it exhausting not to talk lol. I was like that as a child too, which was why I had to mask in the classroom at school, as I suddenly had social anxiety in the classroom and so forced myself to behave and be quiet. Then as soon as it was recess or hometime, I suddenly had this burst of words and hyperactivity.

So it makes sense to use Asperger's syndrome or PPD-NOS to label these sorts of ASD children or adults, because there are some ASD people that exist who are never non-verbal even when at their worst mental state (ie, a meltdown).

 

[vergil96]

So it makes sense to use Asperger's syndrome or PPD-NOS to label these sorts of ASD children or adults, because there are some ASD people that exist who are never non-verbal even when at their worst mental state (ie, a meltdown).

I'm not exactly familiar with the topic of PDD-NOS. What do you mean? And which ones are "these"? Asperger's or PDD-NOS? It seemed to me that it's a quite broad category... a developmental disorder means that some things are "out of synch" and that the brain has a hard time damping signals for whatever reason, including ADHD, which is also a neurodevelopmental disorder. "Development" in medical terms means damping and synchronization of signals. My diagnosis is Asperger's syndrome. (Of course, it's an outdated diagnostic unit now, but I guess doctors are still using old terms)