Question for those who are periodically mute

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I have a daughter who has acquired verbal skills that are above her age level. She was diagnosed with classic autism in the moderate to severe range at the age of 2, but most recently has been reclassified with pdd-nos. I consider her to be mildly autistic. She is soon to turn 7.

Here is the context of my question. Sometimes she still becomes mute. If she is overloaded or overwhelmed, she just loses her ability to talk. She will sometimes write letters in the air so that I will know what she wants, and sometimes she will speak in the tiniest little voice imaginable in true baby talk. No full sentences. It's like she's 3 all over again.

I want to understand what happens and how she experiences this. Does it make her feel frightened? Confused? Does she know she is not talking? I ask if she knows she's not talking because sometimes when she was younger, she thought that if she thought something, others would know what it was.

Thanks for any insight anyone can give me. And yes, I realize that the experience of any one of you may be drastically different than her experience. But I figure I can learn from your perspectives even if they aren't hers exactly.

To me it is sometimes the circumstances resulting in overload that make me frightened that I loose ability to talk. Sometimes it is confusion about questions. I am very visually thinking and if someone asks me how "the week was" I need to analyse all the visuals of the days and hours of that week and it gets confusing and it makes me loose ability to speak. But then I am not frightened, but my mind is "blanking" somehow and cannot process, so I get a blurry image in my head, like a picture of unclear waterpaint.
I used to think that people would know what I was thinking until getting diagnosed in 2010 reading that other people cannot know what I am thinking, but I thought they would see the pictures I see.
Now I am mid-thirty and still have to remind myself of it, that people do not see my pictures.
I guess you need to make your daughter clear, that you cannot know what she is thinking as noone can know what someone else is thinking.
Being mute can be frightened in some circumstances resulting into overload as when you have to communicate, but when it is due to being in your own world it is not frightened in my opinion.

thank you, Eloa.

What has helped my daughter is to remind her that if her lips are not moving, people do not know what she is thinking. It reminds her to connect her words to her thoughts.

I do not know how much of a visual thinker she is, but she is exceptionally artistic and shows a mind for detail that is unusual for her age. She can also pretty much draw an entire drawing by starting on one corner and working her way down (rather than drawing main shapes and filling in details the way most people do.)

I don't like to think of her feeling afraid. She often appears anxious when this happens, but I am assuming it is the anxiety of the situation and not her inability to talk.

I sometimes go mute. I'm fully aware of it. I try to communicate in alternate methods.

When it happens to me, it feels like no matter how hard I try I cannot force my vocal cords to work. The primary feeling that leads to it is overwhelming. However the overwhelming doesn't always stay. Sometimes its just inability to speak after being majorly overwhelmed.

Thank you.

This is probably the one aspect of my daughter's experience that I simply cannot understand at this point. I hate that. I like to feel that I understand her and what she is experiencing. But I cannot imagine what it must be like to be unable to talk.

Before she learned to speak, I was teaching her sign language. I was told by a very wise Aspie that I should continue teaching her sign language after she started speaking. He warned me that no matter how verbal she got, there may be times in which she would be unable to speak. I did not heed his advice and I wish I would have. Terry if you are out there...you were right.

Is the primary feeling closer to frustration or fear? Or something else?

This might indicate that she is visually thinking and maybe you can ask her about it. I do not know how people who think verbally experience mutism.
To me the outside world is quite frightening in general as being autistic, but I do not know if this applies to everyone being autistic. But I have been autistic not knowing being autistic for a long time in my life, so probably it makes a difference when the outside world knows it from early age on and give support.
But I cannot tell you about this as it is not in my experience.

I lose speech due to overload and shutdowns occasionally. I know I am not talking, and this is usually not distressing to me. I know this happened to me as a child, but I don't remember what I thought about it then. I also had verbal skills above my age level, or at least apparent verbal skills.

One thing that really frustrates me is people trying to push me to talk when this happens. I might be able to get 2-3 words out at a given time, but often I can't get any out at all.

It's very annoying, that's for sure. You want to say something--you can't find the words--it's frustrating. For me, it doesn't last long, and it's always a matter of overload--I tend to just go somewhere by myself, wait for things to calm down and my brain to unlock. But as a kid, I couldn't do that; didn't have enough warning or self-awareness. Used to have some seriously bad tantrums.

Have you thought of finding her a backup communication device of some sort? For her it would be something simple, maybe PECS cards or simplified sign language--something she could use when her words don't work. She probably doesn't need an expensive electronic device, but that *is* an option. Some people use things like iPads to talk out loud for them.

She probably has a speech/language therapist, right? Talk to that person about getting her a backup system. Communication is very important, and when she's stressed she might not have access to words. She may be able to use a backup system of that sort to tell you what the problem is, even if she can't say it. Or if she's having a bad day and she's really tired, she might be able to maintain communication by using her backups, instead of going quiet and not being able to get ideas from her head to yours.

I was non-verbal until the age of 7 years old - I'm currently 29 years old and can pass for NT or "high-functioning" if you prefer.

I remember as a child the non-verbal thing was an inability to connect the dots so-to-speak - I knew language (e.g. when I did first start speaking although I had speech problems I knew the English language enough to form sentences) and how to speak, but the two just didn't connect and I wasn't compelled to talk until I was around 7 years old because...well...simply put I didn't realise I had to because I didn't realise that other people were in fact people like me so didn't realise I needed to communicate with them more effectively. To me being non-verbal was like not being able to groom myself, eat solid food or use the bathroom as a child...I knew how in theory, I just didn't know how at the same time...it's really VERY hard to explain but I've seen it with others on the spectrum too.

As an adult I slip into non-verbal phases during times when my autism (Asperger's) is worse, for example at the moment I'm long-term unemployed so not getting the social or mental exercise I need - I slip into non-verbal when at shops and when with people I've not seen for a while. There is no conscious thought to it as far as I can tell, it's just that my brain seems to stop making that 'connection' or realisation that I need to talk and so I stop being able to talk for short periods of time.

There are then times such as 'shut-downs' - these are like 'meltdowns' in that there is too much sensory stimulation or something upsets you to the point where you meltdown/shutdown...both for me can be non-verbal, shut-downs are simply just not talking where as meltdowns are emotional outbursts with an inability to talk too. In these cases it is very simply due to the fact you're over stimulated and it's all gotten too much for you, socialising and communicating on top of everything else can get too much sometimes and if you can't find a way to chill-out the result is a total shut-down and you do shut off your ability to communicate and socialise temporarily.

The only way I can describe is this - it feels like the part of my brain that "translates" thoughts into words/speech has "crashed" (like computers do). The thoughts are there - and I have language ablity - but because the part that translates them is broken, I cannot speak. I often want to speak but an unable to - it can be extremely frustrating at times.

At that age - because she is probably still trying to speak but doesn't realise the words are not coming out - it could be difficult and frustrating for her. I would look into an electronic communication device for her - especially because this has been an on-going thing for her in the past.

Last edited by Kjas on 07 Jul 2012, 10:04 pm, edited 1 time in total.

When I was your daughter's age, I was mute most of the time. I was mostly non-verbal, and I did not communicate verbally or non-verbally. I don't know what it is like for your daughter in her mind, but I can tell you that it was not frightening or frustrating for me. Not communicating and not being able to communicate were not horrible for me as a kid, because iMother anticipated most of my needs, and I had a routine for eberrything that I did. In my case, I didn't have the words in my mind to say them with my mouth, but it seems that your daughter does have the words in her mind, but can't say them with her mouth. Or maybe she sometimes does and sometimes doesn't. Can she write? Writing her thoughts on paper with pencil could be a good enough substitute for speaking during her mute periods. I think that she is a visual thinker, because of her detailed part-by-part drawings.

With your daughter being slightly younger than 7, I think there's plenty of time for her to learn sign language or any other language she's interested in. And with her spelling letters in air, sounds like she might potentially really like the idea of re-learning some sign.

On an unrelated note, it has helped me a lot socially to skip some of the followship skills and jump to the good stuff of low-key leadership, which is less nebulous and more satisfying anyway. That is, I dont believe have to crawl before you walk. The only caveat I might add, if your daughter is sometimes good at low-key leadership, please don't expect her to always be on or put the pressure on that she always needs to be a leader.

This concept is hard to get across. I've seen other people on the spectrum not understand the idea of knowing something but not knowing how to do it "in the moment" (the way I like to say it) as well. It's frustrating to try to explain it because someone is always ready to ask "but how is this remotely possible?"

For me there's frustration, there's no fear. However the frustration is mostly only there when the thoughts can't come out at all. If I can type and have someone read what I want to say then the frustration isn't there. If i can't communicate, its very frustrating.

It's also worth note that I'm not a visual thinker, so this doesn't only happen in visual thinkers. I'm not a verbal thinker though. I'm a "concept thinker".

To me, being non-verbal was like not knowing the theory of communication or verbalization at all. It wasn't a problem of not being able to speak or verbalize or communicate in the moment. It was a problem of these things not eggsisting in my mind at all, so I think that it was ackshuly less frustrating for me than for a lot of others who were non-verbal or selectively mute, but tried to communicate without being able to do so. I think that Temple Grandin wrote about being frustrated due to her inability to communicate when she was little, but I don't recall being frustrated at all, because the idear of communication did not come into my mind at all.

Also, I am a visual thinker, but I have never thought that others thought what I thought. I didn't think about what others thought at all. This was another thing that didn't eggsist in my mind.

Yeah, I think there's a whole spectrum of experience here.

I am not usually frustrated by being mute. I'm frustrated by people who try to force me to speak. I can usually write or type, and the vast majority of my communication is online.