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ASdogGeek
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09 Apr 2013, 11:15 pm

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Recently I saw a few posts on here asking about if verbal individuals with autism wanted to sop speaking and I wanted to reply to them but want to go digging it up but here is my response to it I don't know where to start with this, but I am going to try and explain how verbal communication effects me, the ways it has changed the way i experience the world and the impact this has had on my life.
You don't know me, but no one really dose. Many who who meet me don't usually realize i have autism, they figure I'm just a bit awkward and maybe kinda shy, the more time they spend talking to me the more they pick up that something is a bit "off,". When they find out I am on the autism spectrum they see me as a very verbal high functioning adult with autism. Yeah I'm not sure where I am going with this paragraph. I wish I could write something inspiring but the truth is this is all going to come out sounding kinda crazy. When I was younger I had delays in almost all my areas so speech and though you would not know it today the truth is it took a lot of work to give me the verbal skills I have now. Looking back on my memories I can remember not being able to find the words for what I wanted. I can remember the frustration and i know that I have come such a long way since then. This people who know me, who watched me grow up can see but they don't know, they realize that exact same same progress that i have made over the years has affected me in other ways as well and come at a great cost. That progress has taken something important and valuable from me, Everyone believes being verbal is easy for me. After all it comes naturally to most of them and i have been able to do it for so long now those who knew me as a child and new about my speech delay assume it comes naturally for me too. They don't realize how taxing and draining verbally communicating tends to be for me and they remain blissfully unaware of the physical it has on my body.

For me verbal communicating is not my first language, it is actually a second language. My first language was my senses, there has always been so much information coming into them, so much communication smells, tastes, sounds, sights, and textures all had information and meaning for me and they all shaped the way i understood and saw the world. Some sights, sounds, textures and smells had certain feelings in my body or they had a taste. the feelings they gave me enabled me to understand my environment and i used them to understand the world around me. When i was younger i could pause a moment and without looking at a clock have an idea of the time of day based on the sights, smells and the feel of the light on my skin. When I would go and explore I used these things to help me not get lost. i had a very string visual memory as well that was also supported by these things. I had to learn to use spoken word for communication with others or what one might call verbalism I had to learn to use words to communicate concepts both complex and simple with other people. The more I developed the ability to speak the more these things slowly to fade away.
Often I wish that I had never learned to speak, somedays I hate myself for learning to speak. It has taken so much from me and it has caused me so much more trouble everyone assumes I am so well off because I can speak, they don't see where I am Struggling. Gh.i can speak so they expect more of me then I can really handle. However this is something I will never be able to get anyone to understand. Communicating is a lot of work and even more work when it is verbal. It takes a lot of work for me to put things into words. Before I was fluent I thought through my senses a large amount of this skill is gone. It has been taken away from me replaced with words. I can understand and formulate complex thoughts and ideas and even verbally explain many of them. Yet in-spite of this I can't give directions or tell you where something is in the house. I struggle to tell a doctor what's wrong, how something hurts. I struggle to communicate how I feel and to be able to explain what emotions i am having, I also can't speak when I'm upset, stressed, anxious or frustrated. When this happens people think I'm being stubborn or keeping secrets or being spiteful. Somedays it takes a lot of effort to speak so I give short answers and people assume I am being rude.
It also takes me a lot of work to figure out how to word things. Simple things like replying to a post, writting an essay or even just trying to explain something like this and even things a lot less complex, will take me anywhere from hours to days sometimes even months!! !! The truth is something I have spent over a year try to figure out how to communicate with others and how to explain this. I had started writing this as an attempt to communicate this issue with my therapist as well as loved ones. When I saw the posts I wanted to reply to them so i decided share this here instead of trying to write a separate reply.
Communicating verbaly takes a physical toll on me as well. When ever I am thinking verbal or communicating verbally I process Alot less visual information. My eyes see but my brain will not process what my eyes are seeing, It is like I am hardly seeing or not seeing at all! My eye in fact do see less at these times as well. Because of this I can't have or sustain a conversation while I do things like climb rocks, navigate or other activities that require me to really be able to see and process what I am seeing. Even things as simple as stairs become more of a hazard for me. I have even gotten physically lost with a friend because we're talking. Something (I don't remember what) cause us to stop our conversation for a moment and then we realized we were completely lost! We eventually found our way back to a place we knew after 20 minutes or so. I have more stories like
As i became more and more verbal i became more and more detached from my enviorment, from my sensory thinking. over time i started to loose my sensory thinking. some of my sense in fact began to feel a bit duller. however this did not stop me from having sensory issues or becoming sensorially overloaded. i still had sensory issues. they were just different now i have the issues without the sensory connections I used to have. in loosing the sensory thinking i lost a vital part of myself. The world has become even more frustrating, more confusing. I am also losing my ability to think visually the way I used to. The more I use words for communication the more I use them to think and the more the visuals fade away. I have become les able to navigate my environment.
I feel so trapped because of this, I don't feel right being verbal but I have been verbal for so long and I know I can communicate verbally so I can't just be non verbal, but I hate feeling so disconnected from the world around me. I hate not able to understand the world I used too. I hate that the more I rely on words the more I seem to loose my ability to understand and navigate the world around me.
I have been trying to find a way to explain this tomy therapists and one or two close loved ones, so I tried to come up with examples to help understand if only a little what it is like. I have only managed to come up with 2 examples. The first I will call the prosthetic leg example
Imagine you were born without one or both your legs. You live your first 6 years or so like that getting along with wat you can. You learn to do things without those legs and your arms become strong. Shen one day your parents give your prostetics legs. Over time and lots of therapies as well as the therapies before you got them help you learn how to use them. Within a few years you are able to use them even better then people ever thoughts you would. Still the leg isn't part of you. You can't feel through it like you can where your legs would have been. Sometimes using the prosthetics makes your body sore and tired someday it might hurt or be a big hassle to use them. However everyone will expect you to use them because you can no matter how much It might hurt.
The other example I can think of is in the first language second language scenes. Imagine you learn a second language, you start using it more and more and as you do you grow rapidly in your fluency. You may not be as fluent as a natural born speaker of this language but you can come off as though you are. Many people may even think you are a native speaker. Slowly you use you first language less and less and slowly you start to loose your original language until one day you realize it is gone! You may know a few words in it but for all purposes it is gone. You realize you can't read old notes, old letters or any of your favorite childhood stories. Nor can you understand your old favorite movies anymore. You are no longer part of your original culture and you cant understand things from your culture.Where you live no one really speaks that language and they consider unimportant anyways. They feel that you have made huge amazing progress but never the less you have lost you original language, your culture a huge part of who you are.
Being verbal, people seem to assume I am capable of more then I actually am and they tend to dismiss or down play my other challenges. Many times when I have expressed something that is a challenge for me they dismiss it and tell me that everyone has that issue. They don't get that I have it to a greater degree. Everyone has trouble recognizing people. I often can't pick my mother out when we get separated in a store and I need to remember what she wore to find her, if I saw someone with a similar haircut and jacket I would go with them until they asked why I was walking with them and putting stuff in their basket. Every one have sights sounds or smells that bother them. however certain perfumes cause an instant migraine and feels like someone of stabbing me in the eye.This is just one example. I also have trouble remembering self care, homework, chores ect but I'm told that I'm not trying hard enough. a few times i have tried to explain some of my challenges to people i have been told they cant be that big a deal if i know what they are and now i just need to be more mindful and that will fix them.The irony is I never say I have autism there fore I can't yet my mom will accuse me of using it as an excuse when I don't do things right. I also can't seem to get the tine right, I'm either to loud or quiet and for some reason some people almost always thinks I am being rude, "lecturing them," or being "nasty," when I am not trying to be those things. people see me as high functioning for being verbal they tend to get more upset when I stim or do anything that makes it clear i am autistic. People are also a LOT less understanding when I have meltdowns or become overwhelmed.

Sometimes the verbal communication portion of my brain will shut itself off and for a short while I will feel like myself! I will see more details I'm more aware of my senses and a bit of my old understanding turns back on just a bit and I feel connected again. Though it can never stay like that I always have to return my verbal communication and thinking. I have been communicating verbally for so long it is expected of me. Being verbal is both a part and not a part of me like a prosthetic leg.
I really do wish o hadn't learned to speak. i wish i could give this ability so someone else on the spectrum who would appreciate it more. i really doo feel it has cost me more trouble then problems it has solved for me. sometimes i think about only using my voice with my few friends and family, but i know that would never be accepted. I don't want pity i just want to share in hopes that it might make people more aware that being verbal isn't always a good thing and doesn't always mean high functioning but I don't expect anyone to actually understand this, because I know no one will.


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cberg
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09 Apr 2013, 11:58 pm

Clearly your natural sensitivity has led you to intense analysis of speech throughout your process of learning it. With silence, in your case, comes a sense of regression and, hopefully not too often, wasted potential as interpreted by those around you. I've experienced this in refusing social contact, sometimes for weeks on end, in favor of my obsession with technology. I analyzed mechanisms since before I could speak, and dropped out of high school when I couldn't get credit for my computer science studies. Occasionally I too feel hindered by delayed speech; my problem isn't even with complex words, my (recently self diagnosed) Alexithymia makes it hard to keep my intentions clear in simple conversations. However, only one thing can supply the types of reasoning AS individuals need to get by, and that's language. Just try and let it it take on more forms.


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10 Apr 2013, 6:51 am

Thanks for posting that ASdG. My difficulties are probably lesser, but none the less a lot of that is familiar.

As I've gotten older I've started to revert (I suppose you could say "regressing," but I don't the like the connotations of that word). I don't have the energy to power-through situations with brute-force willpower, anymore. Today, I was reminded today that I can't drive and speak at the same time at all, now. Even thinking about words to say causes my vision to cut out and the next thing I know my car is off the road. In my 20's I could force it and not crash, but I'd have a pounding head and be exhausted for the rest of the day, afterwards.

And, I liked being reminded of what you said about being able to sense the time of day being so in tune with your surroundings. I remember as a kid having such strong feelings from the environment/state-of-things. And, at my most burnt-out the whole world felt dead. There were times I'd go out into the woods and try to force myself to "feel the reality," but it never worked. After many years of rest it's come back a bit, though. I do some informal-style meditation and I can actually observe my senses opening up when I turn down the verbal part of my brain. (Which is a little ironic, since that part of doesn't seem to work very well (or easily, at least).)

I'm not sure if my burnout-related language problems were/are the same, but I have had endless problems trying to say what I mean in real time. In my 20's I learned to improvise a sort of blather that sounded like normal speech but which was only partly connected to what I was trying to say (because I can't keep up in real time). It would lead me to say things that I didn't intend to say or that weren't true and and that caused lots of problems with doctors, amongst other people. I still dread dealing with doctors because of it. At least I never had people telling me my language problems were trivial or imagined, though, but that was because I knew they'd never believe me if I tried to explain it to them.

It's gotten clearer to me over time that I fundamentally process speech (and thoughts into speech) really slowly. I mean, I get by -- I have to take my car for a 'smog' check tomorrow and I have few worries about being able to do it (though I am partly choosing the place because they've been easy to deal with in the past). But language/speech does feel like a burden, and the price is sort of offensive to me, but there's not much I can do about it. I joking wish that telepathy was real: that would be so much easier.

I guess ultimately the problem is that no one knows, on a detailed neurological level, what ASD really is. So, the internal struggles are not going to be "real" to some doctors, teachers, and various others. They'll interpret whatever you say in what makes sense to their experience, and so, "...that happens to everybody."

I saw on "60 Minutes" a while ago some new type of brain scan of some language-related part of Temple Grandin's brain, and it was dramatically different than a scan of the same part of an NT's brain. Maybe that research will lead to a more physical (rather than 'philosophical'/'theory of mind') understanding of things, so that people will stop thinking that everything is due to anxiety or needless complaining and whatnot.



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10 Apr 2013, 11:42 am

Apple_in_my_Eye wrote:
Thanks for posting that ASdG. My difficulties are probably lesser, but none the less a lot of that is familiar.

As I've gotten older I've started to revert (I suppose you could say "regressing," but I don't the like the connotations of that word). I don't have the energy to power-through situations with brute-force willpower, anymore. Today, I was reminded today that I can't drive and speak at the same time at all, now. Even thinking about words to say causes my vision to cut out and the next thing I know my car is off the road. In my 20's I could force it and not crash, but I'd have a pounding head and be exhausted for the rest of the day, afterwards.

And, I liked being reminded of what you said about being able to sense the time of day being so in tune with your surroundings. I remember as a kid having such strong feelings from the environment/state-of-things. And, at my most burnt-out the whole world felt dead. There were times I'd go out into the woods and try to force myself to "feel the reality," but it never worked. After many years of rest it's come back a bit, though. I do some informal-style meditation and I can actually observe my senses opening up when I turn down the verbal part of my brain. (Which is a little ironic, since that part of doesn't seem to work very well (or easily, at least).)

I'm not sure if my burnout-related language problems were/are the same, but I have had endless problems trying to say what I mean in real time. In my 20's I learned to improvise a sort of blather that sounded like normal speech but which was only partly connected to what I was trying to say (because I can't keep up in real time). It would lead me to say things that I didn't intend to say or that weren't true and and that caused lots of problems with doctors, amongst other people. I still dread dealing with doctors because of it. At least I never had people telling me my language problems were trivial or imagined, though, but that was because I knew they'd never believe me if I tried to explain it to them.

It's gotten clearer to me over time that I fundamentally process speech (and thoughts into speech) really slowly. I mean, I get by -- I have to take my car for a 'smog' check tomorrow and I have few worries about being able to do it (though I am partly choosing the place because they've been easy to deal with in the past). But language/speech does feel like a burden, and the price is sort of offensive to me, but there's not much I can do about it. I joking wish that telepathy was real: that would be so much easier.

I guess ultimately the problem is that no one knows, on a detailed neurological level, what ASD really is. So, the internal struggles are not going to be "real" to some doctors, teachers, and various others. They'll interpret whatever you say in what makes sense to their experience, and so, "...that happens to everybody."

I saw on "60 Minutes" a while ago some new type of brain scan of some language-related part of Temple Grandin's brain, and it was dramatically different than a scan of the same part of an NT's brain. Maybe that research will lead to a more physical (rather than 'philosophical'/'theory of mind') understanding of things, so that people will stop thinking that everything is due to anxiety or needless complaining and whatnot.


I really want back what I lost I feel so wrong and off with out it! I know some may think it is silly but I would gladly put up with the frustration of being minimally or non verbal to restore that part of my brain. I feel it was a lot more functional and in some ways I was higher functioning


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10 Apr 2013, 2:09 pm

When I was about 12 or 13 or so, I started trying to translate my thoughts into words whenever possible, because I hardly ever talked and couldn't communicate things when I wanted to -- I was trying to create scripts so that I would already have the words when I needed them.

It worked pretty well, but over time it became really compulsive....I got into the habit of always pushing myself to translate what I thought and felt into words, and it became this sort of fear-based compulsion -- sometimes it's really, really hard to make myself stop -- even when I'm so stressed out that my words aren't making sense and I know they would never be understood as what I mean (what I was actually thinking about).

It also takes way too much energy; The more I focus on using/understanding words, the less energy and brain-space I have left over to actually think-- meaning to think for real, about actual things besides words, in the way I would normally think (visual-spatially and in feelings and patterns). So, for example, if I'm experiencing something problematic in my life, instead of just thinking in a functional way about the problem, I'm also trying to think about how to word my thoughts and feelings about the problem, thinking about how to describe the problem itself....thinking about how to verbalize things takes mental resources away from more important types of thought that would actually facilitate solving the problem -- thinking about the words gets in the way of just thinking, and can not only slow my thought process down massively, but can also actually get in the way of real problem-solving (my working memory sucks, so I can derail and then lose a whole thought process if I stop it to try and translate it into words...and once the actual thought is gone, I haven't a hope of translating it into words and I can sometimes start freaking out).

It's hard to explain to other people that thinking in words is not normal and/or natural for everyone. I'm exhausted and I can't think properly when I'm obsessing about making everything I think into words...

Thankfully I haven't lost my natural ways of thinking...they just don't run as smoothly when the compulsion to translate is at it's worst. And I'd definitely trade some language ability to be free of that compulsion.


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10 Apr 2013, 3:37 pm

Interesting read. :)

I'm not sure if the OP wrote it or just quoted it. :?

Nonetheless, everything happens for a reason & the writer just has to roll with it and make the most of it. Who knows, there may be a time in their life, even just a moment, where having the ability to speak may be life saving or changing for them or someone else - you just never know. And even if just for that single moment, there may be enough value in being verbal to justify having lost other things for it. Everything is maintained in balance.. some senses are weak, others compensate - hence the change process described here. It might not be clear yet what the benefits may be, and they may not be apparent for years yet, and could all boil down to a single moment.. but if everything happens for a reason, maybe the reason for this just hasn't revealed itself yet & will in due time whenever it's supposed to.


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10 Apr 2013, 9:51 pm

cberg wrote:
Clearly your natural sensitivity has led you to intense analysis of speech throughout your process of learning it. With silence, in your case, comes a sense of regression and, hopefully not too often, wasted potential as interpreted by those around you. I've experienced this in refusing social contact, sometimes for weeks on end, in favor of my obsession with technology. I analyzed mechanisms since before I could speak, and dropped out of high school when I couldn't get credit for my computer science studies. Occasionally I too feel hindered by delayed speech; my problem isn't even with complex words, my (recently self diagnosed) Alexithymia makes it hard to keep my intentions clear in simple conversations. However, only one thing can supply the types of reasoning AS individuals need to get by, and that's language. Just try and let it it take on more forms.



I'm a bit confused can you clarify? Sorry I'm sick right now so focus isn't great


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13 Apr 2013, 11:11 am

Doe anyone have advice that might help fix it?


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13 Apr 2013, 11:41 am

ASdogGeek wrote:
Does anyone have advice that might help fix it?


This might be a stupid/impossible idea, but .... maybe if you try to spend time just looking at things, or listening to things or trying to remember certain feelings/sensations -- spend time away from words and try to focus your mind on sensory information and sensory thinking as much as you can....maybe that would help your brain start using old pathways, or building new ones that are all about sensory thinking?


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13 Apr 2013, 1:10 pm

ASdogGeek wrote:
Doe anyone have advice that might help fix it?

Knowing that It takes a lot of effort to adequately describe your thoughts and feelings suggests that you have an understanding of the overlap between reality and human language and that you can truly walk between worlds.
Language just skims the surface of reality and is a useful tool, but it is not reality.
To illustrate that, think of a tree. Describe it in a sentence. Now, without words, think of the tree and everything it is. The reality is that it is so much more then the words that describe it.
I spend most of my time alone or with animals, away from the clutter of human language. To me this is the real world. Animals live in the sensory world you describe.
I don't know if this can help you fix it, but it is my understanding and I believe you have not really lost what you think you have lost.