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Susie123
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20 Dec 2009, 2:43 pm

I am an NT and would like to know how many of you out there don't speak but are articulate via typing. What is your experience like? Are you physically not able to speak or does autism trigger soemthing emotional when you speak? What was it like for you when you were young and people thought you didn't understand them or the world around you? How do you relate to the outside world now?

Thank you in advance for giving me sight into your world.



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20 Dec 2009, 7:52 pm

i sorta speak like a toddler or i babble a lot, but there are times i can be verbal in sentences, but most of the time i do a lot of one worders or echolalia or babbling, or nothing. For me i feel its sensory or like im under water, like i feel im choking to get my words out, and becomes very frustrating. I use a lot of sign to communicate and typing is a sitch, except lately its been differecult due to my arthritis but still good hehe. ppl still today think im ret*d because of how my communication is, more so as a child because i was more affected. For me personally i see and hear everything being done, sometimes i dont understand, but doesnt mean i cant understand no matter what, like sometimes ppl ask me questions and i have the answer in my head, its jus floating there, but getting it out is the hard part, its like the connection from the brain to the mouth is lost or soemthing idk. I repeat a lot of words, even at times ill only type those repeated words out or where i repeat the same sign even if its not the right sign, sometimes i cant even get my thoughts out on paper, typing, or sign, pretty much im jus a lamp or wall at those moments, i find the more i sieze the more i have moments like those too which sucks. i do have some intellegence its in my head, but outwards not many ppl see it, soem ppl dont even think i have a personality, jus call me crazy silly age, cuz i love to play peek a boo, giggle and bounce around, but inside i may be in alotta pain but sometimes it not always disaplayed, like the other day i was giggling bouncing around spinning, flapping, grabbing everything in sight seeming so happy but i was starving and my leg was botherng me from falling earlier, and it was getting me so upset i took taht frustration and turned into over gigglness. anywways hope i answered ur question altitle


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Susie123
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20 Dec 2009, 8:43 pm

Thank you. You've painted a clearer picture for me. I'm sorry that some people misunderstand you. I know it must be very hard. Thank you for helping me better understand. I hope others chime in.



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20 Dec 2009, 8:56 pm

I posted a question similar to yours a while ago. At the time I didn't realise that I experience moments where I am non-verbal, not in the same way that severe autistic are but in the way that when I am stressed or even when I just need to express myself, I just can't find words. When that happens I really try to get words out but they just won't come to my mouth and I get so frustrated. I really try my best to say what I want to say but I rarely even get a few words out so I just give up.

It makes me angry when I hear around college when people talk about autism and they say things like, "Don't talk to x because they won't understand you, they are non-verbal" where it's just not true most of the time. Autistic people can and do understand but they just can't communicate like NT's do. For example, in 'Autism: The Musical' the boy Neil finds it very difficult to speak, but when he uses one of those devices where you can type he communicates fine. I am not directing this at you Susie, I am just expressing my aggravation for those who think that just because you don't speak, you are stupid.


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Psiri
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20 Dec 2009, 9:01 pm

I think there was a post on here some time ago about a man who spoke his first words at the age of 33. They were: "Stop talking to me like I'm an idiot."


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20 Dec 2009, 9:20 pm

I have always had a lot of trouble with verbal communication, particularly around basic needs issues. They did a brain scan on me when I was in a children's group home because I ddin't speak but unfortunately I was allergic to the dye they injected and went into anaphylactic shock and they had to pull me out before they were able to get the picture and give me shots of adrenaline. My mother and a perpetrator were also able to get away with their crimes perpetrated against me because I couldn't say anything about it and if I had been able to they would have undoubtedly been incarcerated and prosecuted for it. Even with clear medical evidence that something terrible had happened to me though, nothing was investigated or done about it, I guess because of my age at the time when they more suggested that I was a teenage whore instead. I was in horror of what was yet happening to me but unable to put voice to it at all. This system that is supposed to be there to protect children is incedibly incompetent, and I'm sure incredibly poor to this day. Even into my adult life I have been easy prey and a target of victimization because of my vulnerabilities, in many more ways than just this one. It's so upsetting, even to this day I have a hard time explaining just how devestating this particular problem is for me to deal with. It's like being an infant all your life where you know things but you just don't have the words or language to say them and it is like being trapped within your own mind. It's especially excruciating when it is very painful, horrible things that really need to be expressed or talked about, and particularly when it can save your own life.



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20 Dec 2009, 9:29 pm

On the bad days, I can't speak at all. It's like a forget how to. Funnily enough I used to get into a lot of trouble at primary school because I pretty much never stopped talking heh. Honestly though I want to learn sign language because I'd feel more comfortable communicating that way rather than using speech.



Susie123
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21 Dec 2009, 6:02 pm

Psiri wrote:
I think there was a post on here some time ago about a man who spoke his first words at the age of 33. They were: "Stop talking to me like I'm an idiot."


Well, I can certainly understand that. How frustrating and maddening it must be to hear the world speak about you in such negative terms and not be able to defend yourself or enlighten them.



Susie123
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21 Dec 2009, 6:12 pm

__biro wrote:
I posted a question similar to yours a while ago. At the time I didn't realise that I experience moments where I am non-verbal, not in the same way that severe autistic are but in the way that when I am stressed or even when I just need to express myself, I just can't find words. When that happens I really try to get words out but they just won't come to my mouth and I get so frustrated. I really try my best to say what I want to say but I rarely even get a few words out so I just give up.

It makes me angry when I hear around college when people talk about autism and they say things like, "Don't talk to x because they won't understand you, they are non-verbal" where it's just not true most of the time. Autistic people can and do understand but they just can't communicate like NT's do. For example, in 'Autism: The Musical' the boy Neil finds it very difficult to speak, but when he uses one of those devices where you can type he communicates fine. I am not directing this at you Susie, I am just expressing my aggravation for those who think that just because you don't speak, you are stupid.


This is interesting -- I guess it's just another part of the spectrum where it comes in all different degrees.
Don't worry about coming off angry -- I'd be angry, too. Some people can be really thoughtless. But others can be really understanding. I think people without autism just don't know that people with autism have all their senses about them and can be highly intellectual but not appear to be that way. It's good you are teaching all those who are reading this, and that we who read what you have to say can spread the word.



Susie123
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21 Dec 2009, 6:16 pm

Meadow wrote:
I have always had a lot of trouble with verbal communication, particularly around basic needs issues. They did a brain scan on me when I was in a children's group home because I ddin't speak but unfortunately I was allergic to the dye they injected and went into anaphylactic shock and they had to pull me out before they were able to get the picture and give me shots of adrenaline. My mother and a perpetrator were also able to get away with their crimes perpetrated against me because I couldn't say anything about it and if I had been able to they would have undoubtedly been incarcerated and prosecuted for it. Even with clear medical evidence that something terrible had happened to me though, nothing was investigated or done about it, I guess because of my age at the time when they more suggested that I was a teenage whore instead. I was in horror of what was yet happening to me but unable to put voice to it at all. This system that is supposed to be there to protect children is incedibly incompetent, and I'm sure incredibly poor to this day. Even into my adult life I have been easy prey and a target of victimization because of my vulnerabilities, in many more ways than just this one. It's so upsetting, even to this day I have a hard time explaining just how devestating this particular problem is for me to deal with. It's like being an infant all your life where you know things but you just don't have the words or language to say them and it is like being trapped within your own mind. It's especially excruciating when it is very painful, horrible things that really need to be expressed or talked about, and particularly when it can save your own life.


I am so sorry about your experiences. It's heartbreaking. Clearly, you are highly articulate with use of a keyboard. It's too bad they were not so easily available back when you needed one.



Susie123
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21 Dec 2009, 6:18 pm

Jak wrote:
On the bad days, I can't speak at all. It's like a forget how to. Funnily enough I used to get into a lot of trouble at primary school because I pretty much never stopped talking heh. Honestly though I want to learn sign language because I'd feel more comfortable communicating that way rather than using speech.


That's interesting -- why do you think signing would be more comfortable?



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21 Dec 2009, 11:29 pm

Susie123 wrote:
Jak wrote:
On the bad days, I can't speak at all. It's like a forget how to. Funnily enough I used to get into a lot of trouble at primary school because I pretty much never stopped talking heh. Honestly though I want to learn sign language because I'd feel more comfortable communicating that way rather than using speech.


That's interesting -- why do you think signing would be more comfortable?


signign is def more comfortable, its easier to get the msg across, u dont have to work so hard to use ur voice, and i think a lot of autistics who are more visiaul learners find it easier to speak visually rather then vocally, i can have a mini conversation with u sign, answer ur questions in sign, interact more with sign, otherwise im basically a planted tree, cuz my language stinks, i find i works so hard to get one word out, that my brain is exhausted after a couple mins, that signing although still become exhaustin jus not as fast. jak, have u ever considered taking a basic sign course? it really does help! and forigve me im not answerin for jak jus adding my personal thought to it, hope jak chimes in and answers as well, and if i appear rude i apologize as well.


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22 Dec 2009, 12:02 am

The thing with sign language is that it's not just a visual version of the local spoken language, it is its own language with it's own grammar, so it's just like learning a new spoken language and all that entails.


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22 Dec 2009, 12:07 am

Odin wrote:
The thing with sign language is that it's not just a visual version of the local spoken language, it is its own language with it's own grammar, so it's just like learning a new spoken language and all that entails.


yes it is, its a fascinating language really is, you can say so much with jus one single sign, but you could still be able to communicate ur best of needs and wants wihtout knowin the whole language or learning ti completely, thats what i love it about it. its so hard to say i am hungry or i got to go to the bathroom, all i do now is do the sign food for hungry or wanna eat, and the sign for toilet for bathroom, stuff like taht become more easier and more comfortable to communicate.


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22 Dec 2009, 12:59 am

If I remember correctly - communicating is done more in the body language rather than vocally. Thus the importance of talking and expressing at the same time, almost acting with feeling with it.

Just as leaning forward entices a leg to move forward and thus begin to move/walk. You can't walk without leaning forward. The same can be said with talking verbally, with autistics and AS people, the lack of body language and tone can make them think of you in a lesser manner because it doesn't match what they expect of you.

If Age was to speak with me, I would treat her the same as I would with any foreign friend. I'd be patient and let them speak without rushing them. UK and US are foreigners to each other. I am sure the conversations we could have would be fascinating and enlightening.

On another note:
Sometimes I just don't want to speak and resort to acceptable sounds as a response instead. In my experience, those who talk and are very vocal are deaf to the world compared to those who do not speak. As they will listen carefully and hear everything.

Speech vs non-speech is a double edged sword.



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22 Dec 2009, 7:32 am

I knew how that felt... It was so stressful that I would just bang my head and scream because i could never be able to talk to anybody, it was so stressful aswell... When I said my first words when I was 3 and a half, I wasn't as stressed out and i eventually started growing out of banging my head on the door.

I knew somebody who I really had admired who couldn't talk at all and the body language was pretty difficult to understand... I felt very sorry for her that she couldn't do what a NT can and she just could never really fit in... :( ...The school treated her like she was a little child but deep inside, I knew there's something that wanted to come out... I know that she has some hidden talent somewhere but is finding hard because people don't see that she is intelligent, she can't tell everyone exactly how she is feeling.

Why couldn't they just introduce a computer to her... she probably might able to communicate through that.... But obviously, she hasn't really thought of it....

Age, you are a very pretty lady and your a sweet person I would of thought and I sure admired your point of views and your experience of what its like being non-verbal...

This is an incredible break through from a teenage girl called Carly...
[youtube]http://www.youtube.com/watch?v=a1uPf5O-on0[/youtube]

I wonder if she is a member of WP?


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