Thursday, September 8, 2011

Use Your Words

There's this phenomenon that happens to me sometimes when I'm talking to someone.  It's a source of great frustration.  It occurs at different times. There's more than one type, but the end result it always non-communication. 

For example, I might have something that happened to me that I'm excited to talk about,or something I read. (Yes, I get super excited to share things I read about with others. :) ) I wait all day for my husband to come home so I can tell him.  He comes in and starts talking about his day.  He goes on and on... totally not following my script of what I envisioned.  I begin to try to reroute the words to fit the new criteria.  I can't.  The words get stuck.  They won't come out.  They swim around inside my head in circles not making sense.  I feel so frustrated that I want to cry, and sometimes I do.  I have to wait until later to tell him what I wanted to, because at that moment I am way too overwhelmed.

Another scenario is when I am in a group of people having a conversation.  My brain can't seem to process their words fast enough to keep up with the conversation.  I have words that I'd like to add to the conversation.  I have opinions that I can vaguely make out inside my head with fuzzy pictures and fluttering words.  I just can't get them out fast enough.  This also happens when I get overwhelmed by sensory or emotion. I feel like a computer running on too little RAM.   I can type, but feel overwhelmed with the prospect of verbalizing what I want to say.  Sometimes, I will repeat the same thing over and over.  Others, I will give a quick short answer that may not be my true thoughts, but rather what I think will get you to leave me alone, because my real explanation would take too many words and right at that moment, each word verbalized is painful. 

The frustration that this causes immense.  I have to wonder if this is how my nonverbal son feels all the time? Does he have these elaborate thoughts, or even simple wants and needs that he desperately wants to share with others, but can't?  When I get this way I find it so isolating.  I feel like I can't connect with others, because there is this wall of miscommunication between us.  Does he feel this way all the time?  Does he feel this way sometimes?  Does he feel lonely?  I know that I do at times when I can't share my thoughts.

So, when you ask an autistic child to 'use their words' as is so common, please, please remember that they're probably trying their best.  They're already frustrated about it and aren't not using their words just to be lazy or get out of putting in effort. 

11 comments:

  1. Thank you so much for sharing you experience and perspective. I really appreciate your openness and honesty and I want to let you know that what you share is really having a positive impact. There are times when I cannot find a word - usually a noun - often a person's name... but that is different from what you describe. I also understand the experience of feeling overwhelmed and weary so that explaining something seems like it will just be too difficult or take too much effort, but for me that is only a very occasional thing. I can appreciate the frustration you feel.

    Your words and description of your feelings and communication give me a window into understanding what my son and husband might sometimes be experiencing.

    I will certainly be a considering the phrase "use your words" from a different point of view. Thank you for another amazing and insightful post!

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  2. Thanks for your feedback. I never know how helpful my blog might be to anyone if no one tells me, so I appreciate it.

    The mute feeling is very much like when you have a name of a person, band, or place on the tip of your tongue, but can't get the words out. That is a good comparison to me. You know what it is instinctively, but can't share that in a way that others can understand, and on top of that the more emotional you get about the situation the harder it is to speak. There have been times where I wish I could just let people read my mind so I don't have to talk! I'm glad that I can help you understand your husband and son better. That's what I write for.

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  3. I know that a lot of "experts" on teaching children with Autism recommend the use of visual aides for various things (to cue in the appropriate behaviour for an activity, to let them know what will happen next etc.). Do you think it would sometimes be helpful, when kids are feeling frustrated as you describe (or when adults are trying to get them to explain it), to have some visual aides to support the expression of how they're feeling? Do you think they could help to cue the adults in to what the child can't explain - or do you think that they would probably be inadequate and still frustrating?

    I'd never realised how much people with Autism sometimes WANT to say but can't. I love the way your blog is allowing me to understand things a little more. I'd value your opinion on this!
    ~Zaiene

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  4. Visual cues are good, as well as letting a usually verbal person type. Sometimes, I just need some time to calm down by myself, but it's hard for me to remember that's what I need. It's hard to explain, but I get so caught up in the moment I forget to remove myself from the situation. I usually do well if I go to another room and text my husband, if it's important or something I need to say, but can't. I guess, maybe my next post ought to be about meltdowns, because there are different scenarios where I might lose my words. For more severe kids I think visual aides would help. For myself and my 9 yo son, we just need patience from others and maybe to detect when we are feeling too frustrated and try to move on from the situation before we get too upset. Self-awareness is difficult for us to come by, but essential in managing successful interactions with others. Bubby gets lots of his words stuck and it's hard to not finish his sentences for him or just to move on in conversation as he stutters and flutters in his speech, but both of those things make him more upset and more nervous, thereby making speech harder for him to come by. He just needs someone to sit there compassionately and let him get his words out, even if it takes forever.

    Thanks for your feedback. If you or anyone else has something you'd like me to blog about in particular let me know!

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  5. I am nonverbal. I can type, but it is hard. Sometimes I have no words for anything, I can lose all my words and lose my understanding of the words of others. I never have words for some subjects, and some subjects I have no words and I can't understand the words of others. I sometimes mix up words and don't realize it. Sometimes I lose a word and can't get to it and can't find a usable replacement word. This is all while typing. I have much more trouble handwriting, and I can't speak at all. The two ASL signs I know are easier than words, I almost never lose them.

    I rarely find it frustrating, though. Words are only necessary to communicate with people. In person (not online) I rarely remember to acknowledge the existence of people, much less have any desire to communicate. On the internet I can take as long as necessary to get the right words lined up in the right way, not being rushed. And even on the internet, I rarely communicate to people (like this comment, not often), mostly I just use my words to write in my journal or do school work.

    So it has not often been a problem for me. It is, I think, much more of a problem and a frustration for the people who want or need to talk to me

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  6. Thanks for sharing your POV with me and any others who may read my blog. I hope that someday my nonverbal son will be able to type, but until then I have to rely on my own thoughts as an autistic person (albeit Asperger's where he is very severely affected) and people's comments like yours to piece together what he is feeling. His happiness and comfort is very important to me, so I worry a lot about how he feels.

    I also forget to acknowledge people. Like on the street, or in a store, or even arriving to work, I never really understood the whole greeting thing. I've realized at the age of 32 that that might be why a lot of people don't consider me to be all that friendly. :) It's not that I don't care, but rather that I forget.

    Anyway, thanks so much for your comment. I appreciate it!

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  7. Thank you so much for sharing your perspective. My son is verbal but he becomes non-verbal when he is stressed or overwhelmed. I have always thought that must be even more frustrating to him. Your blog is very helpful in helping me understand what might be happening in his head at those moments. This definitely encourages me to give him his space until he is ready to talk or express his feelings however he chooses.

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  8. "I feel like a computer running on too little RAM."--yes this exactly.

    This is an excellent post, and explains very nicely what it does indeed feel like. Your little guy is lucky to have you understand, even if just a little, how it may feel to not be able to verbalize.

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    1. Thanks for reading and commenting! I appreciate it!

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  9. You have articulated so well the problem of verbal speech in this post. It is indeed very frustrating to not be able to get the words out especially when it is something close to the heart. I often find myself not understood or misunderstood and not able to explain it further and people think I am quite empty-headed which is not true. I often wonder why if people are social and communicative animals, why do people like us even exist. It is ironic. In my more desperate moments, it has crossed my mind that I'm better off being mute than having a voice and not being able to use it effectively to communicate. Sorry I'm being so negative here.

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    1. When I am really struggling in a situation I can be very negative about it for awhile afterwards. I usually don't mind living in my small world with few friends, but sometimes it really bothers me.

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