When We Say Things We Do Not Mean

Erratic speech.  Unreliable language.  These are all words to describe what many, like my daughter, experience.   Speech that does not represent what is meant,  but that people hear and make assumptions about the person based on what has been said.  Rosemary Crossley in her book, Speechless talks about nominal aphasia – “One of the familiar aftereffects of stroke, for example, is not being able to say what you mean.

Many years ago I became friends with a man who’d had a stroke, leaving him aphasic (meaning he was mostly unable to speak, though he understood what was being said to him.)  Every few months my then boyfriend and I would pick him up at his apartment and take him somewhere.  I don’t remember if he could type his thoughts, this was long before the advent of the iPad, and as he could not hold a writing implement, this was not something he did when we were together.  I do not remember him ever uttering a single word.  Prior to his stroke he had made a name for himself as an avant-garde theater director.  In the theater world he was thought of as a god.  After his stroke he went on to direct a number of works with many famous actors.  People were willing to believe he could not only understand what was being said, but that he had a great deal to say, even though he could not verbalize his thoughts.   His name was Joseph Chaikin.

For those who are Autistic and also have unreliable speech, people tend to take what they say at face value and believe their speech is indicative of their thinking and thought process.  Yet this could not be farther from the truth.  Many are willing to dispense with their disbelief when someone is famous and once spoke, but most are not as willing to believe when someone has word retrieval issues, that they are capable of more than what we hear them say.  “…children who have never been able to speak fluently have not had a chance to establish themselves.  They have not had the typical infant’s experience of controlling the world with their speech.” ~ Speechless by Rosemary Crossley

And as a result they also do not have the same types of interactions with others as those who have more fluent speech.

Because our judgments of intellectual capacity, both formal and informal, are strongly tied to speech, a child who says the wrong words, who gives “silly” answers when asked questions, is likely to be seen as stupid.  A child who can never find the word he wants, or a child who cannot make his tongue do what it should, can come to associate speech with tension, embarrassment, and failure.” ~ Speechless by Rosemary Crossley.

Children with severe speech impairments often develop behavioral problems. These may simply be a result of the frustration inherent in not being able to say what you mean, but this frustration may also be exacerbated by the reactions of the people around them.” ~ Speechless by Rosemary Crossley

One young man who had unreliable language and who Rosemary worked with typed, “I dont make sense and people think Im senseless.” Speechless by Rosemary Crossley

Typically, when someone speaks to us, we believe that what they say is what they mean to say.  We respond  accordingly.  When people tell me something Emma has said and how they don’t understand why she then became so upset because they were doing what she told them she wanted, I understand.  I understand how frustrating that must be, for her, for the other person, for everyone involved.  Emma does not have phrases like, “Oh I know the answer to that, but I can’t think of it just now” or “give me a minute, it will come to me” or “it’s on the tip of my tongue” or “I just had it, the word was right there” or “what’s the word, you know it sounds like ________?”  or “wait, I know this, I know this…” or any of the other things most of us say when we know something, but the words have momentarily escaped us.

Communication is not just speech and for some, spoken language is an unreliable method of communicating.  Finding a more reliable method then becomes essential.  For my daughter, typing is proving to be a far more reliable way to communicate.  And as it turns out, there are a great many others who are just like her.

Waiting

44 responses to “When We Say Things We Do Not Mean

  1. Because the neuromajority are always just SO accurate with everything they do or say, right?

    BTW — I love that backpack.

  2. So true! We’re fortunate that my son is verbal (it’s laborious and hard to understand), but so many people just ignore him or walk away when he’s trying to communicate.
    How can they learn to communicate when no one’s willing to listen?

    • My daughter had a situation where she was actually saying exactly the correct thing given the circumstances, but no one believed her, until she began to scream and bite herself at which point they finally called me and I was able to say, “Yes, she is correct. You should have listened to her.”

      I cannot imagine how awful that must make your son feel, especially when he is working so very hard to be understood.

  3. I like the notion of active listening, where you press through the wordplay whatever its detail; applying a frame to your own part in things, which sees you seek out the intention of the other, sees you configuring to be a sounding board for the voicing of the other’s intention.

    I love the word intention: it also having the sense of in-tension; the held in being vitality and tension of the other. A tension as of the string of a musical instrument, but stretched across all in which a person is constituted; and what is so stretched to sound in voicing being all in which life vitality consists.

  4. Another outstanding post on speech difficulties. This quote leapt out at me because it really made me wonder if Emma feels that she hasn’t fully “established herself” becaue she has so far been unable to “control her world with her speech.”

    ”…children who have never been able to speak fluently have not had a chance to establish themselves. They have not had the typical infant’s experience of controlling the world with their speech.”
    ~ Speechless by Rosemary Crossley

    • I know ABA is viewed with disfavor by a lot of people who post on here, but in Verbal Behavior style ABA (which is much different when done properly than traditional discrete trial-only ABA), the first goal is to help the child learn that their speech “controls their world”. That is done by teaching them to mand (request) first. To do that, you find things they are motivated to get and use that hundreds of times per day to reward ALL communication attempts (whether vocal or AAC or sign). They learn that they communicate – they get.
      I know it doesn’t work with all children, but it worked fabulously with my son and it’s respectful and positive.

    • Richard – I’m looking forward to talking to you about this more! I want to know what you are thinking.

  5. “a child who says the wrong words, who gives “silly” answers when asked questions, is likely to be seen as stupid”

    Funny, because when my son doesn’t answer a question the way I expect, I assume it’s because *I* asked the question wrong or that he would prefer to talk about something more interesting. Not that there’s anything wrong with him.

    • You’re a great parent and I strive to be the same way with my son.

      However, as my son gets older (he’s 9), more and more people seem to think like the person in the quote. Yes, it hurts my heart for him.

    • Kelly – your response is certainly more helpful. After all the people asking usually do not have the kinds of language and word retrieval issues our kids have, yet, most do not seem willing to reframe their question, preferring instead to assume something that actually hurts our kids if they’re wrong!

  6. My son really didn’t say an intelligible word until age nine (mama), and now utters words or word approximations solely on demand. He communicates through his iPad, but makes his thoughts known just as much by his glance, his touch, and sometimes simply his laugh. As his parents we’ve learned what to look for in bridging the gap, and we’ve been rewarded with a child who interacts and communicates with us often. We just have to look for it.

  7. Something else not too many people understand is that for some of us when we are presented with a few choices and we do chose – well that choice isn’t always something we really want. Tension runs high when we know we need to choose and can cause us to point or say any one of the choices just to get it over with. Then, once chosen, our body automatically kicks into action to engage in participation of that “choice” we made for ourself. Our body betrays us. So, we wait our betraying body until it runs it’s course and then protest.

    Because few understand it gets reported like this: “He was on the swing at recess and I gave him the choice of swinging more or going inside. He clearly said “inside” and then got off the swing and went inside quite happily. Once inside he threw the biggest fit ever. I think he should be punished. After all he got exactly what he wanted and then threw a fit. This behavior cannot be tolerated.”

    Some of us stop making choices because we cannot trust our bodies. They may betray us at any moment, making a choice that we do not wish. Then we are stuck with it. I love it when my friends don’t give me direct choices such as “Would you like coffee or lemonade?” but instead say there is coffee and lemonade in the kitchen. Help yourself whenever you wish. This allows me to get my body in gear and actually get what I wish to have in the first place!

    Not sure how much this will make sense. It is hard to explain.

    • I think you’ve explained it very clearly: I know exactly what you mean. Choosing, especially when we feel under pressure for time or other reasons, can be very stressful and one way to alleviate that stress is to snatch at one choice whether we want it or not — it resolves the immediate pressure. The problem is that we then have to live with the consequences of that choice, and if it turns out not to be something we wanted it makes us feel trapped somehwere we do not feel comfortable. Which is a trigger for the kind of reaction you describe.

    • Judy – this is such a wonderfully insightful and very, very helpful comment. Thank you. I will be showing this to my daughter’s teachers. Thank you, thank you!

    • Oh! This totally makes sense! My son does this sometimes, and I sort of thought that this is what was happening, but I wasn’t sure until I read this. Although with him, usually the “meltdown” happens as he is starting to head toward his “choice”.
      I also liked your example of how to get around this. Not offering a direct choice, but stating the options and letting him choose. However, what if that is not an option? My son is 4, so it is not really an option to tell him that there are ingredients to make a ham sandwich or a peanut butter sandwich for lunch when he is ready to eat. Is there a better way to offer direct choices when it is necessary to do so? Visuals sometimes help. Is there anything else?

      • Yup, you could have pictures of both types of sandwiches. Or, if it’s not too much trouble, make half of each sandwich and put them in front of him. If he starts eating one half, ask if he would like more of that type.

        My son is almost 4 and if I asked him what he wants for lunch each day, he would say, “chocolate milk and mango” so I understand sometimes too many options are not a good thing! But offering two healthy options and letting him pick, then *respecting* that choice, will lead to easier decision making for him in the long run.

    • my son struggles with choices and i am trying to adapt my way of presenting them, so it’s an actual choice for him and not just a reaction he thinks I want from him. it’s very hard to communicate this to teachers and others who may be alone with him.

  8. This is my first year working for a school (in addition to private work) and I watch each day as those children that don’t have verbal speech are treated so very differently than those children that do have speech. I wonder if teachers and therapists would treat children the way they do if the children could go home and talk about what had happened. Which only adds to what all of us seem to agree about – verbal speech is not the only speech, and everyone deserves to have whatever tool(s) they need to communicate their thoughts, needs, etc.

    • I think those children would most definitely be treated differently.

      This goes back to the idea of presuming competence. If we presume competence, even when we have no “evidence” we will do no harm. However if we do not presume competence and we are wrong we will most certainly do tremendous harm.

      When we began treating my daughter as though she understood, when we began including her in conversations, when we treated her as we would any other girl her age, her entire demeanor changed. It was clear to us that we had indeed been doing damage to her self esteem, to her sense of self, and that is perhaps the most insidious part about NOT presuming competence. We are hurting children in ways we cannot begin to anticipate.
      Good for you for thinking about this stuff. I wish more school staff and all who work with our kids thought about this.

  9. I’ve had wrong words come out. I’ve made choices quickly, to relieve pressure. I’ve also suffered the embarrassment of having made ridiculous statements because I was saying words I intended to say but not conveying meaning I understood or beliefs I held. This happens when a person thinks there’s an expectation to be met or a way to gain acceptance and approval and doesn’t know what makes some things work but not others. I’ve gotten way better over the years, so it’s been a while since suffering this particular indignity. But I’ll bet I’m not the only one who, as a child or young adult, used inappropriate humor or terminology without knowing what it meant or the reaction it would get, for example. That can happen to anyone, but the problem can be particularly acute when you’re autistic.

    As far as my sometimes uttering of words I never meant to say in the first place is concerned, or my inability to get words to come out at all on some occasions, I can still have that problem, though I can generally mask it well. It’s not because I don’t realize saying what I want can get me what I want (which isn’t a guarantee in life for anyone, anyway). I’m not unmotivated. As has been said by several people commenting on this type of blog post, sometimes my body doesn’t obey me. Saying otherwise would be like saying I have reading issues because I don’t know or care how much fun it could be to read. That simply isn’t so.

    Even when I type, I can hit keys fairly far from the ones I need, and not always because my aim is a bit off. Sometimes my body just gets ahead of me, and I hit random keys for no particular reason. I hunt and peck to type, but I’m fast enough, fortunately, and I hit what I want often enough, that I can still say what I want in a reasonable amount of time. Even if I have to go back and correct something in the same spot several times, because I’m just having some kind of a “moment”, I can still usually manage. Typing works for me because I can fix things before I let them out into the world, not because I always get them right in the first place. I go back when I’ve seen or felt something “wrong” happening, I do repeated checks at the end (spell checkers aren’t perfect, but they’re a great help), and I examine my work to see if I’ve accurately conveyed my meaning (as far as I can determine). I’m using the fact that I’m very verbal to begin with, combined with my propensity for attention to detail and perseveration. In other words, I have ASD strengths that help me overcome ASD weaknesses.

    • MonkeyPliers – when I was a teenager I was with a large group of people and blurted out a boy’s name that I had a crush on without meaning to and without any known context. Those nearby heard and looked at me in alarm. I remember feeling tremendous shame, horror even, and I barely spoke for the rest of the weekend, so afraid that I might say something “wrong”.
      Still, after many decades, I remember that moment as though it were yesterday.
      Thanks so much for sharing your experience here, really appreciate it.

  10. great post, again. In a very recent development, my son is getting teased from boys in his class and reacts very loudly, throws things and has been swearing. i am very frustrated how the focus of the school seems to be on his ‘inappropriate’ behaviour rather than on the causes. he is completely insightful once he has calmed down but it’s clear this is his way to express his distress about it all. he is very articulate usually, so I guess the teachers – even the special ed staff – simply can’t imagine, that he CANNOT “use his words” when he is feeling menaced or belittled.

    • Oh dear, I have had something similar happen with my daughter. I’m so sorry. This kind of thing is just awful and so incredibly un-just. And as the parent we are so often viewed as sticking up for or indulging our child when we point out that the so called inappropriate behavior is actually not so very inappropriate given what is going on. I am so sorry. And yes, insisting that he use his words, (I’m guessing he’s already tried that, with no good results) only makes it worse.

      • He gets angry-upset when he is stressed or confused. we are working on that. But if the cause of his stress is clearly other kids teasing him, and not normal social behaviour he simply doesn’t understand, I refuse to have him take most of the blame just because he ends up exploding.. But I am on it. I am demanding clear actions from the school now. Too important for everyone involved.

  11. Emma seems to have got tall!

  12. What Rosemary said makes so much sense wouldn’t you lash out if you couldn’t say what you meant,

  13. Thanks for the rich discussion — and this beautiful forum! As an SLP, and long-time friend of many children who use echolalia, I’m often struck by the visual component of echolalia. There seems to be an internal instant replay in the child’s mind that includes the words that were spoken at the time. This sound track seems like part of an external ‘reality’ the child is replaying (and, perhaps, speaking) whether he or she wants to or not. Getting past this onion layer takes time — and a feeling of real safety within the relationship — and describes the process of unpeeling language from the ‘gestalt.’ Once unpeeled, building self-generated language happens — as we witness in our kids’ typing, and, depending on their speech access, in oral expression.

    • Do read Musings of an Aspie’s post from yesterday – http://musingsofanaspie.com/2013/09/18/echolalia-thats-what-she-said/

      I’d love to hear your thoughts after you’ve read it.

      Something we’ve been doing with Em is when she begins scripting or repeating a word in a perseverative way, we will make it into a game where we will repeat back what she’s said, but with a slightly different inflection. She often finds this hilarious and we will get into a back and forth that often ends with her saying something surprising or moves on to another topic even. But we are careful to do this only with a great deal of levity and only if she allows that it’s fun. If she says no, or indicates in anyway that she does not want us to respond, we immediately stop.

  14. The Musings were wonderful! I reposted them on our own page — prefaced by this excellent comment from colinb897 (September 18, 2013 at 10:30 am):

    “I like the notion of active listening, where you press through the wordplay whatever its detail; applying a frame to your own part in things, which sees you seek out the intention of the other, sees you configuring to be a sounding board for the voicing of the other’s intention.”

  15. az u r a great teacher. loving your class b

  16. I can relate to this even though I have always been very verbal (even learning to speak and read at a much younger age than most NT children). I was never diagnosed as autistic as a child (even though my Mom has since told me she suspected it but no one would believe her). So, it was usually thought that I was just “stubborn”, “sarcastic”, “to smart for my own good” and “shy”…depending on the situation. That lots of their labels contradicted the other labels they gave me never seemed to be noticed.

    Most of my language issues happened on school. At home my speech was fine. I talked at a rapid pace. So, quickly a lot of people couldn’t keep up. I read (and still read) just as quickly as I spoke then…probably quicker. As a result a lot of school assignments I’d finish quicker than I should have been capable of doing. Which resulted in teachers thinking I had cheated (never in any logical way since half the time all the kids seated around me hadn’t finished the reading yet much less answered all the questions). When asked to explain things I could do it easily…but in my usual rapid fire speech. If asked to slow down – I’d stutter and stammer. I still don’t know why this happened (and still happens if I’m asked to slow down or if my manner of speech is criticized in any way that throws off my thought process – I know it has something to do with being stressed – if I am stressed or overstimulated to much I can’t form thoughts at all and will either get quiet or ramble near nonsense) but I do now realize that it was mistranslated as being a sign that I was lying. When the teachers in my early elementary school years realized it wasn’t a sign of lying I was sent for speech therapy tests. My mom was told then that my speech was fine. I didn’t need speech therapy (my mom knew this of course…I spoke fine at home). I believe they then went back to assuming it was either a sign that I was being dishonest or that I was intentionally seeking attention. I did like (positive) attention as a child but years of negative attention very quickly made me absolutely hate any kind of attention (something that still stands today when I’m 30 years old) but I’d of never seeked out attention by stuttering or being unable to read aloud.

    Reading aloud was another issue I had. Again, I read/spoke to fast and when the snickers and snarls started, followed by the teacher taking the other children’s side and asking me to slow down, it resulted in me stuttering and stammering the words. Which brought on more snickering. Then another issue rose, many of the other students could not read the books at all. So, they had to have help and the progress of reading the book was slow. I’d get bored and read ahead (often finishing the book during one class reading period) and then not even know the place we were at when asked to read aloud. Often then resulting in bad grades for not paying attention (even though paying attention was impossible – I can’t follow reading aloud as it is – the words don’t make sense – I have auditory processing issues and I need a visual to go along with what I”m hearing but when they read slow and mispronounce words I can’t follow along and my mind wanders….reading ahead was the ONLY way I could actually pay attention and learn the material – through 10 years of school only 1 teacher ever caught on to that and thought to ask me about it – the others never bothered or cared).

    School taught me that both speaking and reading aloud were bad things that brought on negative attention. I still struggle with speaking in front of crowds and even in large groups and find typing and writing to be much more comfortable (to the point that I have pain in my wrists that I think likely to be carpal tunnel).

    I can relate to issues your daughter has (although I can only imagine how much more of struggle it must be when speech is even more unreliable than my own can be….my own being frustrating as it is) and having just found your blog (and reading about 10 entries so far in one sitting) I must say that your stories are very touching and relatable and I hope to continue reading them in the future.

  17. Love this reply! It is such a gift to hear adults who have ‘made it’ through childhood share and explain their own developmental process. When I read your story, Tina, flashes of thought about kids I know went through my mind. As an SLP in a clinic with much physical activity and a wonderful Physical Therapist, we try to help kids access their own internal rhythm — which is sometimes incredibly rapid — and hard for their motor planning skill to match! I also know kids whose alertness level needs to be revved up a bit in order for them to access speech (but which is also challenged by motor planning that doesn’t match). What a dilemma for those kids! I love knowing that your reading pace matches your speaking pace, and I would love to know what else is going on in your mind at the time you read and talk. Does what you read translate visually into a line of print? pictures? movies? more non-visual concepts? And when you voice other ideas, what is in your mind at that time? Thank you so much for sharing. Your words help us think about real child development for real individual children!

  18. Pingback: #MusicTherapyBlogger Challenge: Waiting | Songs For Success

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