Celebrating Gratitude

Emma and I discussed yesterday’s post and I asked her what she thought of the way I’ve described her as an “unreliable speaker.”  I haven’t liked how negative that sounds, though I have meant it more factually, and was not suggesting anything beyond those exact words.  She wrote, “Yes, unreliable.  Mostly talking other words even though not what I think.”

We discussed the comments many have written about believing her and how today is, for many, a day celebrating gratitude. I told her how grateful I was to be able to communicate with her.  She told me I could post some of what she wrote in response…

“Decade of ignorance dead. Deny ideas of intelligence can directly minimize the amount of self-worth one feels. I am grateful many are believing in me.”

Happy Thanksgiving everyone!

This photograph of Emma was taken outside my old studio by Jackie Maillis.  Thanks Jackie!

Power

 

 

21 responses to “Celebrating Gratitude

  1. I too wonder if there is a different word than “unreliable”, as I was made out to be a liar so much of my life. I have always had the gift of being able to write–but when I began to speak in sentences and paragraphs age 31 I noticed I could not produce what I did on paper. I still think I sound “incredible” when I speak, and people just look at me and have no comment. So, is there a word for that? Or shall we coin a great word that can be carried down as meaningful? One specifically fit for us.

    • I’m all for coining a new word. I asked Emma about it yesterday, but she was too tired to come up with one word…

      • I was explaining it as “problems with word finding”. We know it is not “elective aphasia” as a psychologist once decided that I spoke in some situations but not in others on purpose (was he jealous that I wasn’t speaking to him?)…

        • I always am incredulous when I hear about “professionals” who assumed something was intentional or manipulative or “elective”… Wow. Just wow!

          • Yes, I am hoping to “get over” all of that, because I believe it is changing–or maybe if I believe it is changing I will be apt to speak out about it more now… Or maybe its just because I am 50+ years old now and I can speak, and I just don’t care anymore what they say?? LOL. Tired of being called an “enigma” because miraculous healing has occured.

            Just after diagnosis when I was 32, there was a rash of people saying maybe I wasn’t, or maybe I was Asperger’s…because people don’t recover from classical autism. Now society is beginning to change its mind about “recovery” from all kinds of things previously thought to be a life sentence. No illness is static; no behavioral display goes on and on; everything changes as we are developing humans in constant flux (sorry–Human Development majors coming out!) Having just now gotten back to my autistic roots, I am trying to finally find an avenue of expression and a way to turn my Master’s program in Admin of Health and Human Wellness programs into inside-out learning for those who (think they are) normal.

            Thank you for your responses–this is the first blog (besides the flashblog) that I have wanted to participate in. I remember myself at ages 11, 12, 13, as I was institutionalized for purposeful, and “incorrigible” behavior…and wonder what a life on a ranch (I talked to animals without words) or even with a supportive family would have been like. You are a fantastic mother!

            • Aw, Bev… this made me tear up, both for your really kind and touching words directed to me and this blog, but also because of the experiences you have shared here.
              I hope it is changing. A friend, who’s son is non-speaking and gives presentations told me they both felt a shift occurring at a recent presentation he gave and that they are hopeful people are starting to at least question what they are being told, but that not so long ago was just stated as fact and taken as a given.
              I hope that is true for all of us, but particularly for my daughter, you and all Autistic people.

  2. I do not recall being told that I had any delay in acquiring speech, but all my life I’ve had auditory processing difficulties. And it works in both directions. I often don’t understand what is being said (especially on the telephone), and I sometimes have difficulty saying what I mean.

    I have learned to keep my mouth shut when I am upset, but in the past I have said things that come from some mysterious place in my brain — things I do not believe or things that are not true. At one time, I took ownership in these things, thinking they came from my subconscious for a reason. Now I know they are/were just nonsense, and I call the phenomenon “garbage mouth.”

    I rely on written communication whenever possible, because speaking/listening is so hard for me. I think I’m a pretty good public speaker, but I need to work from a script. I think that what’s behind all of this (besides the sensory/information overload to my autistic brain) is that I don’t think in words; I think in concepts, and need time to translate from and to words. It’s also exhausting, which is part of why social situations are so stressful.

    I share these thoughts in the hope that they might give some perspective to what Emma and others are experiencing. Happy Thanksgiving!

    • Thanks so much Michael. It’s interesting to hear of other’s experiences with language, spoken and written. Also I have to believe much of the so called “social” issues that are cited as being one of the “main” challenges for those on the spectrum is less “social” and more centered on spoken language issues. I’m interested to know your take on this idea…

  3. Yeah, I have struggled with that one too. People ask me, “Is he verbal?” Well, how do you answer that? Obviously he “verbalizes”, but what they want to know is “does he talk?”. But “talking” is on a continuum, and people are measuring him against his NT peers. I usually say something along the lines of “he speaks well enough to get his point across, but sometimes he says things that he doesn’t mean”. But it is good to now that Emma endorses unreliable. It does sound negative to me, too, but there probably isn’t a better word for it.
    Happy Turkey Day!!!

  4. CBC (our Canadian broadcast radio) had a competition years ago called “wanted words” – words for things that don’t have words for them. (Among my favourites were: what’s a word for a person who kills plants? Answer: a morticulturist. What’s a word for the moment you meet someone you know you know, but you can’t remember their name? Answer: Deja who?). Anyway, maybe this falls in the category of a “wanted word” :-)….maybe we could put it out and see what comes up…
    Happy Thanksgiving (and/or Hannukah) my American (and/or Jewish) friends.

  5. Ohhh Emma, we believe you and we believe in you. Thank you for your resilience and patience. Thank you for trying over and over again. The world could learn a lot from you. I am thankful you exist. Thanks Ariane for posting this, you made a wonderful day even greater.

  6. I suppose the thing with ‘unreliable speaker’ is that it could be taken in two different ways. For Emma, speaking is unreliable because she can’t rely on speech to communicate what she wants. That’s a totally neutral statement, neither negative or positive. On the other hand, if you’re thinking in terms of Emma’s speech being unreliable to others, that’s carries a much more negative meaning.

  7. ‘Unreliable meaning maker’? i.e. unreliable listener? It is the sense we make of the speaker that is unreliable rather than their speech? If someone misunderstands what I say, am I an unreliable speaker or are you an unreliable listener?

    • I think more than anything it’s that the word “unreliable” puts the onus (in most people’s minds) on her and that’s not at all what I mean or mean to say. So now I’m the unreliable speaker!

    • communication is where speaker and listener meet–so it is unreliable communication, right? I have noticed that although I know it is me not speaking in a way they can understand, not all of my words are wrong–many people have such short attention spans (or are they really not that into what I am saying?) they pay attention to the first three words then are gone…

      • ‘Unreliable communication’ is good I think 🙂 That makes both speaker and listener part of the reliability and unreliability of things, with shared responsibility for communication which work and which doesn’t. Thank you…

        • Yes, but I still feel the word “unreliable” has a negative connotation. Was trying to think of a positive, that is descriptive of differently communicated!

          • Ah. Yes I see. That would be good. Also for me the word ‘unreliable’ is instantly associated with the term ‘unreliable narrator’ used in relation to fiction. The sort of communication we’re talking about here isn’t a literary narrative but a lived one so I agree moving away from the word ‘unreliable’ would be good.

            • Me too Liz. That’s what I think of when I hear the word “unreliable”. For now I think I will quote Emma (with her permission) and let her tell me how she wants me to describe what goes on for her, particularly as I’m not describing anyone else. That way I’m not attaching some word to her that she doesn’t like or makes her feel badly. Besides I don’t want to talk about any of this without her input and particularly as we’ve found a way for her to give us that input!

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