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Niamh
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24 May 2011, 7:06 am

I wonder if this is just another silly generalisation, but is there some truth to it?

Communication difficulties for those of us on the autistic spectrum, both for verbal and non-verbal people, can stop us from verbally saying all the things that we long to say - expressing emotions, contributing to discussions, voicing opinions, and generally getting our personality and intelligence across to others when the opportunity comes. For how many of us is it true that, because of failing to communicate these things verbally, that we become really "outspoken", for want of a better word, in written forms of communication, such as here on the forums or on other social networking websites?

It's true for me. I'm physically able to speak, but I can't seem to speak much around people, even familiar people, because it feels difficult. I struggle to engage my thoughts, body and hearing in that coordinated way to get what's inside my mind out into the space around me. I never had trouble learning to speak, but I don't speak well - it's as though I use inappropriate muscles to do it, creating a dull, mumbly sound, and my sensitivity to sound causes me to speak too quietly, while my thoughts just don't happen in words to begin with so I have to translate everything in my mind first. All this makes me choose not to speak most of the time. And of course the body language, facial expression, eye contact etc., which I get away with a lot of the time, but with tiring effort. So when I'm around people I struggle to communicate so that all my thoughts and ideas that I want to express end up coming out online in essay-length chunks!

I'm extremely grateful for the internet because of this. Does this apply to you too? Do you think that, generally, the people who can't speak are the ones who have the most to say?



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24 May 2011, 7:56 am

Sometimes I'm sure my 4yr old is trying to say words, but he can't, he's looking at me and holding his breath and then making odd noises in his throat, then he lets all his breath out. He used to be able to talk a fair bit, I think it frustrates him that he can't, I just think it's really really difficult for him to access speech now.



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24 May 2011, 7:56 am

Niamh wrote:
I'm extremely grateful for the internet because of this. Does this apply to you too? Do you think that, generally, the people who can't speak are the ones who have the most to say?


Yup.

I can speak in torrents if it is something I know about. But in an unstructured social environment? Fuggedaboudit.

I have gotten quite good at 'conversation', but there is nothing natural about it. Somebody will say something and I will consciously recognize that I am expected to respond. Through experience I've been able to collect enough standard responses to make it work. So if somebody says something about a their cat I know that I should probably say something about our cats. I'm not sure how it is perceived by others, but I know on the inside, I am forcing it.


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Niamh
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24 May 2011, 8:07 am

nostromo wrote:
Sometimes I'm sure my 4yr old is trying to say words, but he can't, he's looking at me and holding his breath and then making odd noises in his throat, then he lets all his breath out. He used to be able to talk a fair bit, I think it frustrates him that he can't, I just think it's really really difficult for him to access speech now.


Has he started learning about reading and writing yet? Have you heard of Carly Fleischmann? Here is her website. http://www.carlysvoice.com She's a teenager with autism and can't speak, but she discovered that she could type on a computer to talk, and now she can show us all her profound intelligence and thinking which she could never communicate before. On her site she has a page of recommendations for non-verbal autistic people, you might find something helpful there... So if your little boy doesn't learn to talk much, it's worth encouraging typing and writing!

I end up spending hours here on WP or on other sites just spilling out thoughts that I wouldn't be able to structure into coherent language via speech. I can actually speak pretty well and didn't have a delay or childhood regression in developing speech, but it's probably just the wrong wiring in my brain causing the use of compensatory "pathways", i.e. sending thoughts the long way round, that makes it all so hard, along with the lack of natural understanding etc. I tend to hold my breath too, usually at random while speaking and for a few seconds at a time. I don't know how to stop this, it's like my thoughts are still processing and I freeze... Like trying to watch a video on a slow internet connection, and the video keeps stopping every few seconds to download a bit more.



lelia
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24 May 2011, 11:04 am

Nostromo, for a few people signing is useful. For others a communication device.



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24 May 2011, 11:54 am

Quote:
Can't speak, but so much to say!

i am the opposite in a way.

i can speak for ages about what amounts to "nothing" in the sense that it is entirely irrelevant to anything that matters in the world of normal people.

i can iterate volumes of conjecture, but after i am told that what i am talking about is extremely unimportant, and not of interest to the average person, i sometimes reflect on what it was that i was trying to say, and i sometimes can perceive that there is no benefit associated with knowing some of the things i have found out in my misguided inspection of my world.

my psychiatrist said to my parents when i was 12 that my curiosity had no specific goal. i was curious about aspects of things that are mainly irrelevant to other people's interests or concerns. i have not progressed much, but now i i have a modicum of situational awareness.

so to summarize, i know lots about things that no one is interested in, and my enthusiasm for venting my knowledge about them is at a greater pressure than my recognition that unless other people are strong and can tell me they are not interested, then i am going to bury them in facts and ideas about things that they have never considered worthy of attention (and probably for good reason).

i do not have many dimensions to my substance of thought. "relevance" is something i can not calculate as hard as i try.



nostromo
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24 May 2011, 2:39 pm

Niamh wrote:
nostromo wrote:
Sometimes I'm sure my 4yr old is trying to say words, but he can't, he's looking at me and holding his breath and then making odd noises in his throat, then he lets all his breath out. He used to be able to talk a fair bit, I think it frustrates him that he can't, I just think it's really really difficult for him to access speech now.


Has he started learning about reading and writing yet? Have you heard of Carly Fleischmann? Here is her website. http://www.carlysvoice.com She's a teenager with autism and can't speak, but she discovered that she could type on a computer to talk, and now she can show us all her profound intelligence and thinking which she could never communicate before. On her site she has a page of recommendations for non-verbal autistic people, you might find something helpful there... So if your little boy doesn't learn to talk much, it's worth encouraging typing and writing!

I end up spending hours here on WP or on other sites just spilling out thoughts that I wouldn't be able to structure into coherent language via speech. I can actually speak pretty well and didn't have a delay or childhood regression in developing speech, but it's probably just the wrong wiring in my brain causing the use of compensatory "pathways", i.e. sending thoughts the long way round, that makes it all so hard, along with the lack of natural understanding etc. I tend to hold my breath too, usually at random while speaking and for a few seconds at a time. I don't know how to stop this, it's like my thoughts are still processing and I freeze... Like trying to watch a video on a slow internet connection, and the video keeps stopping every few seconds to download a bit more.

He hasn't learnt to read or write yet but were doing PECS and that's working at a basic level so that's quite encouraging.



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24 May 2011, 3:42 pm

I'm physically able to speak, but often don't. I clam up in social situations. I gravitated towards theatre because I could never hold a conversation, but put a script in my hand telling me what to say and I felt almost normal.

I'm usually content to just listen to conversation, but sometimes people think that's weird and they pressure me to contribute.

And then there are some subjects I can get started on where I can really talk. I can talk about myself, but who really wants to hear that?

When I'm in a conversation I am often so focused on 'what can I say?' that I miss the conversation altogether.

I can communicate much better in writing.


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Niamh
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24 May 2011, 4:43 pm

I find myself particularly stumped when I'm asked "How are you?" and discover that the conversation is supposed to actually happen, instead of the person just passing you by... Like, the other day I went to a college classmate to congratulate her on a performance and I thought we'd be moving on out the doorway while speaking, but she stopped at the doorway because she was waiting for someone else, so she not only thanked me but went on to ask me how I was, and all I could say was "grand..." and leave a big silence hanging there... So awkward! Luckily her friend turned up just a few seconds later.

It doesn't matter how many thoughts are in my head. I have a hunger for information about anything that grabs my interest, and I have an urge to share it with people - but it's as if I don't think in words so I struggle to turn it into words, and if you add all the other social problems on top of that it just doesn't happen!



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24 May 2011, 5:22 pm

Very similar to my experience.

I often cannot speak when I want to, even with familiar people. It's like it gets stuck somewhere between my brain and my mouth. I don't have any physical problems with speech, and can be quite eloquent when I can speak ... but when I have something I want to add to conversation or something I want to share about my experiences, I often can't - I find this very very frustrating and it often leads to meltdown or shutdown for me.

I have been known to continue conversations by email, even after the other person has move on, because I have something I want to say in response to something someone said to me in person and wasn't able to at the time.

And I often write huge essay like emails to a couple of trusted people which basically just dump everything that I've been wanting to say to everyone but haven't been able to to for the last hour/day/week whatever. One of them has been in receipt of this extensive writing for 6 or 7 years now - he calls them my "downloads". He probably knows more about me than anyone else, which is both a cause for concern and for celebration (because he is still my friend!).

I don't tend to write huge essays on the internet because there isn't generally the right place for me to write what I want to say when it could be on a myriad of different topics all at once ...



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24 May 2011, 5:33 pm

I find writing immensely easier and always have. If I wish to get anything personal across to someone, I can write it but not speak it in a way that makes it clear. I find listening to other people talk generally difficult and boring even though I will feign interest for a time. I only tend to be able to talk fluently about things that have been main interests otherwise I find myself out of my depth.



alexi
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24 May 2011, 6:43 pm

There are many things that I have strong opinions on, and am very knowledgeable about. I feel like there are often things bursting to get out of me, but I can't access the right information, and can not form it into sentences. Certainly not at the speed of conversation.

I notice about myself that although I have a lot to say, I choose to say almost nothing as it is easier. I can argue with someone in my mind about why they are wrong, but the reality of speaking it will not be the same. It doesn't make me feel very good about myself.



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24 May 2011, 6:46 pm

Not being able to speak is not the same as not having anything to say. I saw a T-Shirt with that sentence on it, one time.


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PLNM
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24 May 2011, 6:57 pm

Niamh wrote:
I find myself particularly stumped when I'm asked "How are you?" and discover that the conversation is supposed to actually happen


This is a biggie for me, I really can't tell the difference between "How are you?/How's it going?" meaning "Hello" and "How are you?/How's it going?" meaning "How are you?". I only found out it doesn't always mean the second relatively recently though.

I like to think I find writing easier, but actually when pressed to write something specific, such as a report, I find it even more difficult than talking.



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24 May 2011, 8:53 pm

PLNM wrote:
Niamh wrote:
I find myself particularly stumped when I'm asked "How are you?" and discover that the conversation is supposed to actually happen


This is a biggie for me, I really can't tell the difference between "How are you?/How's it going?" meaning "Hello" and "How are you?/How's it going?" meaning "How are you?". I only found out it doesn't always mean the second relatively recently though.

I like to think I find writing easier, but actually when pressed to write something specific, such as a report, I find it even more difficult than talking.

Oh wow.. I think I have trouble with that one too, now that I think about it.;;; (People never used to ask this, but now that I have a job it comes up a lot...)
And even if I realize the person is actually offering to initiate a conversation.. what a vague question!! How am I supposed to just instantly come up with an answer to that? And then figure out and remember all the right words to explain it? So usually I just say "oh, I'm good" or something, even if I know I should say more. (But I always wonder: Why would they even be interested though? Even though they asked, do they really want to hear me talk?;;; )


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24 May 2011, 9:07 pm

Ahh, I'm always thinking 'I forgot to say that' or 'I should have said that' or 'why can't I just speak without screwing up my words everytime?'

So I have my blog to write post after post about my experience with autism. The people my posts are aimed at say they read it but they still don't seem to understand me.


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