When Words Don’t Reflect What is in the Mind

Imagine being asked a simple question, say a question about whether you’ve ever been to New Zealand.  Now you know perfectly well that you’ve never traveled to New Zealand, though you have a pretty good idea of where it’s located, however it’s not a place you’ve spent much time thinking about and it wasn’t even on your top-ten-must-travel-to-before-I die list.  But when you opened your mouth instead of saying, “No, I’ve never been to New Zealand, why do you ask?” all you could manage to say was, “Yes!” and not just a sullen sort of yes, but a happy, eager and enthusiastic “YES!”

So now the person begins talking to you about New Zealand and maybe they’ve just returned or they were born and raised there and they go on and on and then say, “What was your favorite place in New Zealand?”  Well, since you’ve actually never stepped foot in New Zealand this question is impossible to answer and so maybe you say “vanilla cake” because the one thing you know about New Zealand is that people are referred to as Kiwis and your only reference to kiwis is when you tried an actual kiwi once and didn’t care for it, but your favorite thing to eat is vanilla cake and besides vanilla cake makes you happy and this conversation is making you anxious because you said “YES!” when you actually meant “no” but things have moved on so quickly that you are feeling tremendous anxiety and wish you could just go somewhere away from this voice that is speaking so quickly about a place you’ve never been to nor have any interest in.

They look at you with that look, it’s a mixture of irritation and surprise, like they cannot decide whether you are purposefully making fun of them, or are tuning them out because you’re rude and have no manners or because you are actually hungry and are wanting to eat some cake.  So they give you the benefit of the doubt and say, “Yeah, well we can’t eat vanilla cake right now and anyway we were discussing New Zealand, so I’d like you to focus so that we can continue.”  Feeling frustrated and maybe even ashamed that they think you’re rude, you try to make a friendly overture by saying, “I like vanilla cake.”  But instead of smiling they look even more angry and so your anxiety kicks into high gear and you bite your hand to center yourself and because you are overwhelmed with frustration.

Suddenly all thought of New Zealand and anything else gets tossed out the window, because here you are biting yourself to center yourself and also cope with how frustrated you are, but all it does is make the other person furious.  You are so completely misunderstood and without the means to explain, you are caught in a web of other people’s assumptions.  “Stop it!  We do not bite!” the person scolds and maybe they grab your hand and hold it done at your side.  Their grip is firm, so firm, it actually hurts, and they look so angry that it’s scary too.  They are restraining you and glaring at you and all because your mouth wouldn’t obey your mind and said, “Yes” when you meant “no”.

I have no idea if this is what it’s like for my daughter or others who have what I call unreliable spoken language, but these are the kinds of scenarios I imagine and wonder about.  Is this what it’s like?  One day she will tell me, but in the meantime, there are others who are now writing about similar things, when their mind knows but their body is unable to do as their mind wants.  This is what Ido writes in his book, Ido in Autismland:

“… my mom asked me to hand her a bag.  I kept handing her a piece of paper the bag was near.”

“It happens less often now but it was common when I was small in my ABA drills.  I wanted to touch a card but my hand had another plan so I had to redo drills until my hand got it.  Not my head.  It knew everything.  My hand had to learn the drill. It’s something for the neurologists to study.  This is why so many parents think their kids don’t understand them.”

Naoki Higashida in his book, The Reason I Jump, writes:

“…as soon as I try to speak to someone my words just vanish.  Sure, sometimes I manage a few words, but even these can come out the complete opposite to what I want to say.”

What would that be like?  How would it feel to be completely misunderstood, your every action misinterpreted by someone else who believes you meant something that you did not?

Tracy Thresher types during a Q&A at the ICI Conference ~ July, 2013

Tracy Writes

33 responses to “When Words Don’t Reflect What is in the Mind

  1. I can’t tell you how happy I am that you are offering this for discussion. (Well, maybe if I could find just the right words!). For over 20 years, I have been having mind-boggling interactions with young people who are unable to speak (or minimally able). It is totally fascinating, but because my methods are controversial, i have found few people willing to talk about it. If we had been having conversations like you are now doing instead of fighting about the method itself, we’d have a much richer understanding of these amazing people. Thank you, Ariane, Emma, Ido, Naoki, Larry, Tracy and all the others! (Believe me, there are MANY!!!)

    • Yes, there are many and more all the time! That makes me happy.
      I cannot imagine what it has been like to doggedly work with people who are deemed unable to do what you see them doing. Do you see the tide finally turning, Char? Are you beginning to see a shift?

  2. I have often said “yes” when I meant “no” to a simple question. I usually jump in and interrupt with, “NO! I meant no!” and then they look at me like I’m a complete idiot. How could I not answer a simple question? It’s always interesting going through international customs. (Let’s not bring up the time I got stopped at British customs because I was sucking on my finger because I cut myself while getting off the plane). But yes, I’ve made mistakes at doctor’s offices, interviews…all sorts of fragile times. It’s actually easier to go places where I don’t speak the language since they don’t ask me any questions at all.

    • You got stopped for sucking on your finger? Oops, I do that all the time when I hurt or cut myself, also in public. And I cut myself a LOT. So, another thing to worry about when going through customs, lol. (I’m always worried whether I’m smiling too brightly. The answer is usually yes).

      Sorry for the tangent!

    • Sucking your fingers was cause to stop you? You’d think the customs officials had more serious things to occupy their time…

    • This sort of thing happens to me fairly frequently with yes/no questions–my mouth spits out an answer before my mind has fully processed the question. If it’s not the first question, it can be because my mind is still using some information from the last one. Like the last time I went to the vet, she asked about the material my food dishes and water bowl are made from. I initially gave the wrong answer to the second because my mind was still cluttered with the information pulled up by the first question. This issue can crop up in regular conversation too–I wind up saying something not quite appropriate after a subtle topic shift because I what I hear gets fit into what I’m thinking. I say what I mean to say, but what I’m responding to isn’t quite what was said.

  3. I think about the yes and no thing… it’s not just autistic or non-speaking people who have problems with that. A famous example is the salesman’s trick of establishing a “yes rhythm”, where they keep making several statements that the customer feels are spot-on, and so they keep affirming, and then when it comes to the actual pitch the customer feels so affirmative that they’ll say yes with hardly thinking about it, even if they would have said no to the same sales pitch at the beginning. Terry Pratchett also had a funny example of this in one of his books, portraying a husband who just keeps saying “yes dear” to his wife’s endless chatter and not really listening, until he suddenly realises that within the waterfall of words, apparently he agreed to have his mother-in-law come live with them or something like that.

    So it’s kind of unfair that people get angry when an autistic person says something different than what they mean. It happens.

    • Exactly. People say things all the time without thinking or that they weren’t paying attention to.
      What Naoki is referring to (I think) is actually quite a bit different. It’s more than that. It’s actually about saying something completely different from what was meant. I see this with my daughter as well. She will answer a question with something completely off topic. Something that has nothing at all to do with the question asked. But if she’s asked to write her response she’ll come out with something incredibly insightful as well as being on topic.

      • Yes, the neurology behind it is different, but I don’t understand why that is such a barrier to acceptance when neurotypical people exhibit the same behaviour sometimes.

        • I think it comes down to othering. This idea that the neurology is so vastly different from their experience they cannot (or maybe do not want to) bridge the gap. It’s this same “othering” that allows people to restrain Autistic people, or feel it’s perfectly reasonable to put a child in an “isolation” room, etc. What do you think?

          • Yeah, I agree. Othering is so endemic in all of us. You can even see it in “people who have iPhones” and “people who have Androids”. We all label and say “oh but those people are not like us” and find communities that “are like us”.

            The horrible consequences of this type of behaviour are always overlooked. As soon as you start othering, you deny a part of someone’s humanity and their right to express themselves differently or behave differently. Even if it’s just about iPhones. People get uncomfortable or even angry when someone expresses their own differentness. And like you say, at the end of the line this results in the kind of thinking that makes it OK to try and remove or punish that difference.

    • On the topic of “yes rhythm” – if I’m in an overloady place, I will get stuck on monosyllabic answers, and will sometimes answer “Yeah” when I mean, “I acknowledge what you said,” because for some reason “yeah” is easier than nonverbal sounds of acknowledgement that I’m not sure whether the other person will find rude (stuff like “mm” and “hmm”, which can make the other person think I’m ignoring them) which can at times lead to awkward misunderstandings.

  4. Ellen Alexander

    Ariane, Your blog today is an excellent discussion that gets to the heart of problem that non-verbal or less verbal autistic people have. It clearly describes what we have observed with Alan for years. I sent what you wrote to his cousin who wrote, “fascinating, sad and intriguing”. Now that we know Alan’s real thinking through RPM it is sad to think of how frustrating it must be when the wrong words come out and he knows better. I intend to show him your blog when I see him this week-end. Maybe he will be able to comment on it through RPM.

  5. When my son says something very odd or contrary to what I would expect him to say, I often try to imagine what detours of thinking could have brought him to that answer. I don’t always know but when I do, it’s along the lines of your ‘vanilla cake’ example – it makes perfect sense! I think it’s most confusing and upsetting for others when they want him to acknowledge something emotional, maybe a personal loss or another feeling. Instead of just asquising or saying ‘the right thing’, he will translate it into something he can relate to. When he then comments on it, it comes out completely unrelated or even ‘inappropriate’.
    Later conversations and statements show me he knows exactly what the other person was on about. But in their eyes, he would have already have “failed” to give the right reply…

    • And how awful that must be for your son, to be viewed as having failed when he knew what the other person was talking about all along.

      One of the hardest things is watching my daughter converse with someone like Soma, but when I work with her I am no where near as able as Soma and feeling questions are problematic. For now, I’ve had to stay away from them. If I think about it, it makes sense. Feelings can be overwhelming, burying any spoken or written language even further, making it very hard to express.

  6. The excerpts from Ido’s book have floored me. What if that is what it is like for my son?!

      • *thinks some more*
        Actually my son does like doing ABA I know that much, his therapists are kind people and he has fun and learns things but still..
        It has occured to me that by far the greatest success they have had in teaching him is hand over hand prompting.

        Oh and greetings from actual New Zealand, haveing Sunday morning coffee over here 🙂

        • This is from Ido’s book – he writes: “My ABA teachers would talk baby talk and tickle me to reward me. I cared that they see me as smart, so I tried…” Later he writes, “The assumption that people don’t understand if they reply incorrectly is a huge misconception. ABA is built on this erroneous premise.” He writes about both wanting to please his ABA therapists and show them that he could do as they were asking, but that his body did not always do as his mind wanted and so he failed often and was unable to move on. In his chapter – How I would Have Liked to Have Been Taught – he writes: “I would teach autistic kids grade level lessons so that they learn the same stuff as normal kids. You cannot imagine how boring it is to be drilled over and over on baby tasks that you know but can’t get your body to show…. So, even if you think the kid doesn’t understand, they shouldn’t deny them interesting lessons.”

          I didn’t know you hailed from New Zealand. *Waves hi!*

          • Yes. It took Ido (who seems very very similar to my son to me) to spell it out for my slow engineers brain to understand. Hit me like an anvil on the head actually.

            I’m very grateful, I resolved the night I read your previous post ‘Non-speaking with a lot to say’ and the anvil dropped, that I would teach my son to read and write, so we’ve been using the iPad since and playing around with spelling games and the like. I guide his hand mostly and talk to him and then let him try.

            Early days..I thought I might look into Soma’s ideas and see if I can incorporate some variant of that if I can. If I can get him understanding words and able to show it, then I should be able to get his school to start teaching him things.

            • This comment from you made me cry. This makes me so happy. Please, please keep me updated.

            • “This comment from you made me cry. This makes me so happy. Please, please keep me updated.”

              Yes I certainly will!
              I may have had a tear or two as well, but don’t tell anyone 🙂

              ‘Anvils’ are raining on my head as I re-examine what my eyes tell me about everything about my son’s behaviour, but that my brain had misinterpreted to think a certain way. For example I was reading my son a book last night and he wasn’t interested. Well, let me think about that..so that would be the book that I have..read him hundreds of times already..that is for 3-4 year olds. Maybe it seems obvious, but if you are assuming what other people have told you that your non-verbal child with Autism has ID then you tell yourself some reason other than the obvious else about why he will not sit and listen.

              And when I read him a book about Submarines and he examines each page for 10 minutes, and wakes me up in the morning by dropping the book on my head for me to read..then in the paradigm I have assumed, I tell myself he is just fascinated with the colours and shapes.or ‘something like that’.

              And when I talk to him like a person and tell him I am going to teach him to read and write (so he can “tell us things”) and get more books, and then he stops his stimming and his noises and he sits still and quiet and listens and then he looks at me – what lies can I tell myself then?

            • Nostromo – Wow! Wow! Jumping up and down!! WOW! 😀

  7. This happens sometimes to my 7 yo. He can be very verbal and very articulate, so people don’t understand when he is either unable to speak, or when unintended words come out. Thanks for educating people about “unreliable spoken language,” it’s a concept I think most people have never heard of.

  8. Absolutely — and so much more! Like everything that has to do with individuals and individual constellations of inputting, processing, and outputting, there are undoubtedly many answers for each child, depending on the stage of development, and the situation. Each of these answers would have tentacles into the depths of each cerebral hemisphere (and the cross-over in between and the form of thought for inputting, pondering, and responding).

    If the original question (about New Zealand for instance) gets translated into the visual pictures of the right brain, and this triggers associations there, are there even words that go with that visual thinking? And even if there was something verbal to pull something from that mental movie, isolating them means freeze-framing the entire story. And if there’s nothing verbal there, then the next mental journey might be cross-referencing with a mental photo album like Temple Grandin describes, and flipping through pictures until something seems salient) — and *then* retrieving from those depths.

    By then, the timing of the original query has been disrupted, of course, but even a timely mental attempt presumes successful auditory processing of the original question! And even if the language-development level of the child includes the grammar of the question (“Have you ever been…” is pretty advanced grammar), does he or she have adequate short term memory for this newly-minted grammar whose acoustic trace vanishes in a nanosecond.

    Then there’s the type of response required: if the response type has a visual referent (like the name of something), there’s hope for a young child. But if it so elusive as ‘yes’ which even under the best of developmental conditions isn’t easy to use well, the chances of success are more limited. And this is just the cognitive constellation for a developing brain!

    Of course, for our kids we need to add to this complexity the motor pieces of praxis, like initiating and getting ‘stuck’ — and it’s a wonder our kids don’t give up completely! The human brain and body is amazing — but our kids’ tenacity and spirit is the real miracle here!

    • The piece I’m still trying to grapple with is something Ido writes about in his book Ido in Autismland. That his mind understands everything but his body will not necessarily follow. He talks about this in regard to his actual body movements, but also in his frustration to speak and not be able to. Also Naoki talks about this in his book, The Reason I Jump. This desire to say one thing but have something completely different come out of his mouth, yet when given a letter board is able to type insightful and really profound thoughts about the topic being discussed. I see this with my daughter as well. She will carry on a written conversation, complete with asking questions and really profound insights while verbally making utterances that are often just sounds and not even “words” or anyway words as we understand them. This is what I am trying to understand and what I find baffling.

      • Hi again, I will keep this short and sweet, but in my research over the many years to help Brooke the most helpful therapist in explaining some of the questions you are baffling with was a therapist named Judith Bierman. She is NDT certified and speaks internationally but has a therapy center here in my town. The good news is she is a pt but her ot and speech therapists had to be NDT trained to work for her and they were the only therapists that were able to help me more understand what was going on with Brooke way back when others didn’t know or care. They said things like she sees the ball
        and knows what it is but her body doesn’t cooperate when she is asked to get it.(motor planning) Anyway if you know about NDT please delete, but if not. It is NDTA.org if you would like to explore it more.
        Neurodevelopmental Treatment

  9. My first and best teachers about motor planning (praxis) were the little kids who could voice their frustrations when their bodies did not obey their minds. The first little teacher was happily walking out the door to be with his mom when he spied a big yellow ball in the corner. His trajectory changed, and he walked towards the ball instead, crying, “I don’t want it!” Another boy who usually played on the floor was trying to get his larger body to obey this idea one day, but he stood motionless. Finally, he wailed, “My knees! They’re stuck!”

    And as agonizing as these situations were, of course, these kids could verbalize their agony — unlike so many of our kids whose silence of stuckedness is so painful. Many a child has found strategies to get their voices started, and some have simply opted to keep it going once it’s started! Others use a ‘default’ string of sounds at first, followed by the real message after that. (Please take a look at the articles on our website for more to read! When Speech Gets Stuck will get you started!)

    I should mention that I have had the benefit of learning from wonderful Occupational Therapists along the way, and if any of you need a place to start thinking about praxis, Jean Ayres’ pioneering work, Sensory Integration and the Child, has been reprinted, and revised in the 25th Anniversary edition. One key definition needs to be mentioned: a motor plan is unique; it begins with an idea, then uses motor initiation, continuance, and ending. One of the many premises of motor planning is an intact body schema, which means knowing where one’s body is in relation to space, and where all it’s parts are in relationship to each other.

    This is a big challenge, of course, and the growing child faces having to revise this schema over and over again — and some places in the body are just plain mysterious to begin with! Knowing how all the muscles of the mouth can coordinate with each other is a monumental task — but one of the ironies is that speech practice, useful for developing strength, precision, and timing, can actually interfere with motor planning. Practicing the same word or phrase even a few times can sometimes create a loop tape of sorts that plays and replays whether the child wants it to or not!

    Comparing this complexity to the relative motor simplicity of pointing to one letter at a time is important! And, yes, loop tapes of pointing and typing can develop too, but during the learning phase, the monitoring of the finger with the eyes, the isolation of a finger on the right hand — to coordinate with the left brain helps to create a relatively stable neural pathway.

    This is a good place to stop this reply today! Thanks, Ariane, for you wonderful questions — and your amazing blog!

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s