going totally mute

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Anyone autistic and gone totally mute at an age older than baby or young child?

Daily. But it's not permanent. The words always come back.

Nope. But there had been times when I don't want to talk about a certain subject.

Occasionally, under great stress, for a few minutes at a time. But it's more common that I'll lose the ability to communicate effectively, and fall back on canned phrases and fitting words into the pattern of conversation without stopping to think whether or not they are what I actually meant to say.

Written language, on the other hand, I've never lost. Words on paper are easier than words said out loud, just like doing math on paper is easier than doing it in your head.

Many times I've wished that I could, and I'm pretty sure I'd be better at expressing myself in sign, but I've always decided against it.

I think a lot of people wished I would go mute . Although I have phases where I need to be alone and I rarely talk I am usually going on and on about something.

I've heard of some autistic people "regressing" in adolescence or adulthood in terms of speech loss, but I don't know a lot about that.

As for me, it's similar to what Callista wrote. I've only had speech become totally impossible twice, for less that 15 minutes, so I don't have to deal with major speech loss. (Some days it's a bit 'discomobulating' to speak, but I can usually push through that if I need to.)

OTOH, it always feels like a kludge. At my last doctor's visit he asked me a question that I needed a lot of time to think about to answer, but I panicked and gave a canned response (which was not correct), twice. Ugh.

There's a non-verbal sticky thread around here somewhere. LabPet would probably know about that.

Off-topic thought: seems a little shortsighted that the DSM criteria only look at speech delay. It seems like a person can have trouble with speech without it necessarily being delayed. Maybe delay is just something that parents & doctors are likely to especially notice?

That doesn't count does it? You were just thinking for an answer.

I lost speech in early childhood and then gained it again. And then in later childhood I began to have periods of being mute. And then those periods got longer and more frequent. And by early adulthood I was mute full-time as far as communication goes. (I can repeat things I hear but I cannot use speech for communication so I'm functionally mute.)

It has also happened to greater or lesser degrees in a few other people I know. Some even lost speech in adulthood. And I know someone who was contacted in a panic by a father whose adolescent autistic son developed the same movement disorder that I have very suddenly rather than the gradual onset that I experienced.

It's a movement disorder that happens only to autistic people and may be simply the expression of particular variants of autism. It resembles parkinsonism and catatonia in some ways without being either. It can affect voluntary and/or involuntary movements in extremely complex ways. It can be intermittent, progressive, or constant. When I was becoming mute I also developed traits like frequently slowing down, or entirely stopping, voluntary movement. I am better at triggered movement than voluntary movement but I have recently had some amount of loss of even some involuntary movements (I don't stim as often as I used to) and triggered movements.

On a test of galvanic skin response, I used to have a really obvious differentiation between the two, because even tiny voluntary movements such as wiggling my toes raised my galvanic skin response considerably, whereas they showed me that nondisabled people can wave their arms around frantically and it doesn't raise it at all. However with triggered movements (such as typing) and involuntary movements (such as rocking) it didn't raise it. Showing that it's so hard for me to do voluntary movements that the stress is measurable even at my good moments when people can't see the effort behind it. (The only reason that stopped happening is that my galvanic skin response now rarely goes above a very low number even with pretty extreme stress.)

the dsm criteria really only list the lack of speech delay for aspergers, to be exact:
There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

but for autism they list more than that. for autism its :
# delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
# in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
# stereotyped and repetitive use of language or idiosyncratic language

so really, you could have no significant delay in language acquisition, and meet the criteria for aspergers, yet still have the inability to initiate or sustain conversation, or the stereotyped or idiosyncratic language.

my son did not have a significant delay in language acquisition, altho it was delayed he did have a few words by 2 yrs and a very few short phrases by 3. he has the pedantic speech and unusual speech patterns, such as last night correcting me when i asked if he wanted mac n cheese, he insisted it was macaroni and cheese. he also does not initiate or sustain conversation in a typical manner, there is none of the smile-and-nod stories i get with my 6 yr old.

I lost the ability to communicate with speech a few times in my teens and still find it quite difficult to this day.

As a very young child (5 or 6) I use to wonder how people knew what to say to each other, and verbal comunication was an absolute mystery for a long time. I use to just echo what everyone would say to me, and even echo what I would say back to myself over and over trying to see if what I said made sense, consequently I would often experienced the phenomenon where words lose their meaning after hearing them over and over, which made me even more confused.

The experience in my teens was vastly different. It was more of a jumble of words in my head that I couldn't get out. I understood speech just fine, and I knew what I wanted to say, its just that I couldn't sequence the words to expresses it. I experienced this off and on up into my early 20s, and still experience it to a extent today.

anbuend--Pardon my scientific curiosity, but would this movement disorder you refer to be an extension of what causes people with AS and other ASDs to have coordination problems? Does it have a specific name?

Still studying to understand what the galvanic skin response test deals with...am I understanding it correctly that it detects when a person is stressed? Or is it more specific than that?

It's sometimes referred to as autistic catatonia but it doesn't have a particular set name yet. In my records it's been diagnosed variously as "central nervous system disorder not otherwise specified," "autism with related movement disorder," "parkinsonlike movement disorder," and "catatonia". (What people don't understand is that catatonia is not simply a failure to move. It's actually a wide variety of complex movement disturbances, that have pretty considerable overlap with certain aspects of autism. (See this article (link) for more information on that.) Catatonia is also neurological rather than psychological although it can occur along with some psychological conditions.) For awhile I was part of a discussion group for autistic people who were experiencing this, which is why I've met so many others (some of whom lost speech like I did, some of whom didn't). I got involved after I was at a conference and someone saw me freeze in place (which I was horribly embarrassed by) and directed me to the right information -- at that point in time there were only two journal articles on it so I got very lucky. I sent them to my doctor who'd known me since near the start of the progressive part of this (which was preceded by the same problems but in milder form), and he immediately recognized what they were talking about as what I was experiencing.

Galivanic skin response is a physical measure of stress, basically. So what it was showing was that when I move voluntarily, I experience stress. It was by accident -- someone asked me why the graph on the screen kept jumping upward and I said "Oh that's because I'm moving," and they said "Well movement shouldn't do that" and we tested it some more on both me and that person and found out which movements made it go up and which didn't. Rocking actually made it go down, but that was automatic rocking, not voluntary rocking. Of course I knew that movement was difficult enough to cause me considerable stress, but I didn't know there was any objective way to measure it.

Oh, and I forgot to add -- it may or may not be related to motor clumsiness. I once read an article that suggested that autistic people who had trouble with clumsiness, and autistic people who had more complex movement disorders, were like... a disturbance in two separate sorts of the same pipeline of movement. Like if it gets disturbed at one point you could get clumsiness but at another point you could get that voluntary/automatic movement split and difficulty carrying out certain complex movements, ease at others, in ways that don't make sense until you understand some fairly arcane stuff that crops up in parkinsonian conditions, catatonia, apraxia, and the like (like not being able to walk through doorways without extreme effort, but being able to do so if you're echoing someone else's movements, and things like that). But I don't know if they were totally certain or not.

Thank you very much for sharing that article...that is exactly the sort of thing I was looking for.

One of the points I found the most striking as I read was the bad assumption that so many people have, that the kinds of movements and difficulties seen with autism are some sort of intentional or deviant behavior in the way that a person with an attitude problem might (the distinction between refusal to move or to speak, and the inability to do those things at those times).

That is something I find very, very frustrating in society. Though I am going to bring up a MUCH milder example--being clumsy--I really wonder what my coordination and other skills might have been like had I not been treated as an "attitude problem," as a kid who didn't try and didn't give a you-know-what, and maybe had been given some compassion and encouragement, and maybe some individualized help to capitalize on what I do have even if I would never quite be like the other kids. But because I was not obviously disabled--because I was functional--the attitude was just that I was a loser.

And I have three words for THAT: self-fulfilling prophecy. By the time I got to middle/high school, I truly DIDN'T care...why, when the result was just going to be humiliation by teachers and most of the students? (It was also in high school where I first saw what an adaptive PE class is like--THOSE teachers actually cared about helping their students reach the best of their abilities, whatever that best was, instead of the horrific, choking atmosphere of competition where some are "winners" and some are "losers" just because of how their bodies were made.)

What I wouldn't do to see such assumptions and attitudes erased--starting with the dregs of the school system (with rare exceptions): gym teachers.

Ugh--sorry...monologue.

The longer I spend on my own, the more I feel unable to converse. When forced to begin when I'm not expecting it after these periods I get very angry and snappy towards the instigator (usually my sister who I live with). I can see it happening and know I'm really out of order in the way I speak back but cannot help it. I need to be jolted out of my solitude for this not to happen.