How many of us have uttered those three words to our kids?
Use your words!
And yet, if your child is like mine, they probably do use words. Perhaps they “script”, words we dismiss because we recognize them from a movie, or perhaps we hear the tone and recognize it as echolalia and therefore ignore. Maybe we think of the words as a verbal stim or maybe we hear that those words come from a teacher, the bus driver, another kid, a friend, us… and again we dismiss them as meaningless. But what if we are wrong? What if all those words our kids are nobly attempting to use ARE communicating something, but it is US who cannot make the connection? What if our kids do not learn language as we think of language being learned, but they are learning it, in their own way, on their own timeline? What if all those words they keep using, the ones we are told to ignore or not reinforce by acknowledging, are HOW they are learning to speak?
I am currently reading Marge Blanc’s book, Natural Language Acquisition on the Autism Spectrum: The Journey from Echolalia to Self-Generated Language
and these are but a few of the questions being answered. One thing I have not yet seen or can find in this terrific book is any mention of Tourette’s. I am curious to know the authors opinion on how Tourette’s factors into language acquisition or if it even does. Marge, if you’re reading this, I’m hoping you’ll comment!
In those early, blurred years after Emma’s diagnosis I remember thinking that any language was good language. And then my daughter began to say things, things I could not and did not understand and I was told, those are meaningless words, you must ignore them, you must not reinforce them. But maybe, just maybe those words are the foundation for others that I and others will be able to understand at some point. My friend Ibby, of the fabulous blog, Tiny Grace Notes, told me more than a year ago about the importance of not trying to do a word for word translation of the things my daughter said, but rather to lean into the words. I couldn’t fully understand what she was telling me at the time, but slowly I have begun to.
Marge Blanc writes, “As we valiantly try to replace our kids’ echolalia, their natural language, we feel validated when they learn to say new things. We teach our kids a dozen functional phrases and sentences and feel satisfied that we have taught “functional speech.” The tragedy is that while IEP goals are met, children’s linguistic potential has been ignored – and undermined. We have forgotten how to assess a child’s developmental language level and his capacity to develop generative language. And we have also failed to consider that the functional phrases we’ve taught might actually interfere with his potential to develop language competence. And in the process, the echolalia doesn’t go away.”
Now add to this idea the way we are taught to ignore those scripts, that we mustn’t give them any air to breathe as we will only encourage the proliferation of similar non “language.” So we smile patiently and nod our heads and say…
Use your words.
But not those words. Use these words. The words I want to hear. The words I am now going to repeat and have you say over and over with the hope that you will say these words, my words, in place of yours. Isn’t that really what we mean when we say “use your words”? Use words I want to hear. Use words I give you, but don’t, please don’t use YOUR words.
Over a year ago I wrote about how Emma advocated for herself on the school bus. You can read that post ‘here‘. What I didn’t spend a great deal of time talking about was how she tried, repeatedly to “use her words” but was not listened to because they did not believe she understood what she was saying. It was only after many attempts of using the only words she knew, “you’re going the wrong way!” “Emma goes to a different school!” and “you have to go this way!” that she began to scream and then bite herself and eventually punch herself in the face. Even then, when she fell to the floor of the bus, refusing to get off, crying and hurting herself, even then they continued to not listen to the words she was saying and using and insisted she get off the bus. It was only when one of the staff at her old school heard her and recognized her and thought to tell the driver that yes, she was correct and no longer went to this school, that she was on the wrong bus, it was only then that they dialed my number and told me my daughter was refusing to go to school, and as it turns out, rightfully so. They had taken her to the wrong school.
When they brought her home she was devastated. I will never forget the look on her face as she descended the steps of that bus. Before her feet hit the ground I said, “You are so awesome Emma! You told them this wasn’t your bus. You told them they were going the wrong way! I am so proud of you!” Emma still talks about that morning, that morning over a year ago when she was “using her words” and no one listened.
Use your words.
Waiting for the school bus ~ October 2, 2013
Emma's Hope Book 
Thanks Ariane. The Words have tremendous power. There is a thought process that we ought to use our Words with caution, for they become our Actions; then our Actions become our Habits; and our Habits become our Character; and ultimately our Character becomes our Destiny. Thus the creator of one’s Words is always the master of one’s Destiny. Great post indeed! Thanks for sharing.
Best Wishes.
Love this! It was like reading one of those “if you give a mouse a cookie” books!
I like it. 🙂
The interdependence is surely like the mouse and cookie story. It makes the point about the power of our words in deciding our destiny. The quote is attributed to Mahatma Gandhi as well as to Margaret Thatcher. Thanks for your positive response.
Ciao.
Gah I hate “use your words”. Because usually I am trying. Boyfriend used to use that a lot. “Use your words because I can’t help you until you tell me what is wrong.” Now that we’ve got the autism thing sorted out and a reason for why the words don’t always work (and also nice because I usually thought I was just being difficult and not that I actually couldn’t use my words because that was a far more terrifying possibility), luckily, he has gotten much better with that and will use sign or give me a phone to text or type what is wrong or if it works for that situation, just let me calm down first before figuring out what is wrong.
And it would be so frustrating if when I could manage to get words out, if they were ignored for not being the right words. Or for being part of a script. Because I made words. They might be formatted a bit strangely for the situation, but they probably are enough to give you a idea of what is going on if you just think about it.
Alana, this made me think about how whenever my husband and I argue about something how helpful it is on those occasions when we stop “using our words” and stay quiet for a little while, how things calm down faster and then sometimes, when I’ve been really upset, how writing has been far more helpful than verbal language. I don’t know that anyone responds well to the directive…
This post is so incredibly important, Ariane! What a brave girl!
She was/is! It broke my heart that no one listened to her.
Powerful stuff! I pretty much advocate the parents learning a bit of the child’s language and the child learning a bit of the parent’s language. This way the learning curve is more of a compromise and everyone ends up “bilingual.” Maybe one day Autistic Language will be on people’s CVs.
Ha! Love that!!
I love reading about you Emma! When given the right supports all people can contribute, live quality lives and truly enjoy what life has to offer. I have seen many people move towards independence not only with their typing, but in all areas of life, when given the right supports. I happened to just finish Marie Osmond’s book, “The Key is Love”. I loved reading about her mother Olive and her strategies in raising her nine children. One of them was saying to her kids, “You must be so proud of yourself” and “love is the key”. Emma your life journey is truly are an inspiration to our son Jacob and our entire family. Cheers to you mom! Cheers to you Emma!
Thanks so much Jeanne!
My son didn’t use scripts to answer questions but when asked something a lot of the time he wouldn’t answer at all or would start out using clear speech but quickly descend into babble. I learned very quickly not to interupt the babble because he would just sigh and stop speaking at all. Most times I had no idea what he was talking about but gradually over years the speech became clearer and the babble lessened till it totally disappeared. Now he is 16 years old with good language skills but to this day he hates to interupted with questions so I listen carefully and only interupt if I really need a point clarified. His biggest barrier to gaining language was me. When others were talking to him if he didn’t answer quickly I would answer for him. I still hate to see him struggling to find an answer but I now know that if a question is directed to him it’s his answer that is wanted not what I think he will answer. Also, unlike his mother, he never has to say “that’s not what I meant” because he never speaks without thinking about what he is going to say.
Ah yes… the urge to do for others what they can do for themselves. What parent isn’t guilty of that? I know I am. A work in progress, for sure…
I cannot stand when people ignore my daughter and either address me or don’t listen to her when she is trying so hard to communicate and language doesn’t come easily. It is so frustrating. Thank you for writing this!
Another one I really hate is when someone asks her something and then doesn’t wait for an answer, but then is on to the next question, or worse walks away or changes the subject.
Yeah nothing demonstrates they don’t actually expect you to say something worth them hearing in the time allotted quite like moving right on. When I was a respite caregiver since I was protective of my charges I did have the ability sometimes to confront people who did that to them where I just don’t for myself.
My older son’s first day of kindergarten the bus driver went right past our house on the way home. Why? b/c I wasn’t outside waiting for him at the stop. Why not? I was peering out the window as the bus rolled by (and my panic set in) b/c NoBodyToldMeAParentHadtobeAttheBusStoptoGettheKid. I wanted him to be able to independently walk the few steps down the driveway and into the house. Well. He turned purple in the face and stomped up to the busdriver and refused to sit down and made a scene. That driver did back up 100 yards or more. To the house we had just moved into. Thank heaven the driver listened. I was so glad we held him the extra year – he was fully 6 years old at the start of K. How was I supposed to know I was expected to be physically out there at the bus stop? By osmosis? By the momchainofcommunication excuse me I was brand new to the town? Whew grups can be dumb.
Anyway we all survived and he is now 27 years old. And he still deeply remembers that day!!! !!!!! You go Emma!
So glad everyone survived!!
And I guess the point of my story other than yeah us too is sometimes kids use all the right words or say in some way all the right things but the grownups still don’t listen. As Emma said, and as is now one of my favorite sayings in the whole wide world, “communication is hard.” ❤
You know what she said that I just absolutely love? “Language is an awkward way to communicate.” Whew! Talk about profound!
“Oh no! Not pink, make it blue!” – Meriweather in Disney’s Sleeping Beauty upon seeing the dress Flora is making for Rose. At age 4 years, this was my daughter’s phrase of choice when she was presented with an option she did not want. It was her way of saying “no, I want something else.” I remember the weeks of confusion as we tried to figure out why she was saying this. Soon she began substituting the actual items for “pink” and “blue”. “Oh no! Not broccoli, make it peas!” To us, this was huge. She was taking the echolalia and scripted speech and expanding on it- making it her own. At the time, I would have been absolutely satisfied if this was all we ever got. We were fortunate to work with a fantastic SLP who knew to use scripted speech as a building block to unique speech. Four years later, I still hear some scripted speech and echolalia, but my daughter is talking. She is able to use unique speech, and again, if she goes no further than this, I’m thrilled.
Oh Erica, so happy to read this! You’ve pretty much described what Marge Blanc talks about in the book I mention in the post.
““As we … replace our kids’ echolalia, their natural language, we feel validated when they learn to say new things. We teach … functional phrases and sentences and feel satisfied that we have taught “functional speech.” … children’s linguistic potential has been ignored – and undermined. We have forgotten how to assess a child’s developmental language level and his capacity to develop generative language. … we have … failed to consider that the functional phrases … interfere with his potential to develop language competence. … echolalia doesn’t go away.”
Much taken by the idea that echolalia is the natural (autistic) language usage. That leaves that usage, that autistic-functional language usage, requiring to be tracked, mapped, modelled, theorised and discursively introduced (Ibby’s admonition as to “leaning into” the words, would seem to express her project of work at this locus). So we have then resourced ourselves with the conception that autistic language usage is functional across autistic occurring.
So-called functional language usage, takes its functionality across what is societal and social. What we are doing when we use language in this way, is one of the most richly complex aspects of human occurring. We haven’t then really yet tracked, mapped, modelled, theorised and discursively introduced what language there does, and just how it does it. We are collectively competent in this particular language usage, but we don’t much understand that competence.
Dealing with the autistic, as we now do in this era and moment, then throws this limited understanding of language usage, into stark relief. To do better with autistic language usage, we also have to learn much more about social/societal language usage.
My sense and judgement is, that language usage is about expression and realisation, expression and realisation that is really self-expression and self-realisation. It then seems to me that intention is the big dynamic. What are our Emma’s doing and intending as they use language. It’s then crucial that we resource our moment of recognition of that intending. If we get that right, then we allow our Emma’s recourse to generative language usage.
The fulcrum and crux of generative language is the sense of having a recognised self. When we have sense of our recognised self, then we unleash exploration across that self; and all else in development follows.
The work of recognising the intending and doing and emerging self of our Emma’s, is our work. Failing here, is our failing.
I’m grateful for the idea and insight that echolalic language usage is natural autistic language usage, it functional across autistic occurring.
As an aside. My own general thinking has been much influenced by adolescent reading of Martin Heideggar. Reading his works, being subjected to his language usage, gave me a sense of how the feral winds of all that is blow through the language usage we take recourse to. Strikes me that our Emma’s ferally walk across that landscape which Heideggar strove to capture and express intellectually and scholastically. When we lean into Emma’s words, we may find ourselves braced against that feral wind.
Colin – that’s really beautifully said. I particularly love, “When we lean into Emma’s words, we may find ourselves braced against that feral wind.”
Oh, the “leaning into the words” is so important and so hard. When my kiddo says something that doesn’t quite make sense to me, my brain (now) automatically goes in a dozen different directions to try to figure out what he is trying to tell me. Is it something he saw? Something he wants? Is he just wanted to tell me about it? Where did we see/do it last? What was it related to? What emotion was attached to it at the time? I have to admit that I am getting pretty good at looking past the word itself and trying to deduce the thoughts behind it, but it really takes another kind of thinking.
And I hate “use your words”. Wouldn’t he use his words if it could?
Yes, exactly. If it were so simple everyone would!
This! Yes!
Thank you to both you and Emma for sharing your journey!
(((Leah)))
It is amazing, I was just lamenting about my son’s Special Ed teacher use of this phrase, “use your words,” during a major meltdown my son was having in the school office when I was picking him up early for an appointment. Our therapist instructed us not to speak while Jack is melting down, as it just escalates things. Further, no one wants to hear a phrase like that when they are frustrated!!!
I wish that special ed teachers had to present proof of some credential, acknowleding that they know what they should about autism when responsible for an IEP of an austistic child. It is hard to inquire without putting them on the defensive. And, it is hard to share info and resources without being receive as a difficult parent, which has am impact on how your child is treated. I am really stuck in thos dilema, and will be doing what I can in an upcoming meeting I have just requested to this end.
I try hard not to step on toes, I try to say things with kindness and in a way that will be seen as collaborative, but I’m afraid I am not always able to restrain myself when irritated and I’m sure, during those times, the recipients at her school wish I would stop using my words! 🙂
These speech issues are so difficult to understand. I googled the relationship between autism and Tourette’s and while they share some genetic markers, there wasn’t much I found that was useful. As far as treatment goes:
There is no cure for Tourette’s and no medication that works universally for all individuals without significant adverse effects. Knowledge, education and understanding are uppermost in management plans for tic disorders. The management of the symptoms of Tourette’s may include pharmacological, behavioral and psychological therapies. While pharmacological intervention is reserved for more severe symptoms, other treatments (such as supportive psychotherapy or cognitive behavioral therapy) may help to avoid or ameliorate depression and social isolation, and to improve family support. Educating a patient, family, and surrounding community (such as friends, school, and church) is a key treatment strategy, and may be all that is required in mild cases.
So whether or not that are significant links, the bottom line is that we need to help Emma communicate in the ways that best suit HER current abilities. Educating the education community seems to be the best and most vital place to start, since they are the ones most likely to make demands on her which are unsuited to her strengths and damaging to her confidence and composure.
Yeah. Placing verbal demands on her is definitely NOT helpful. We will keep chipping away!
I am finding that I have to use these principles with my 3 yr old grandson as well as my husband who is developing Alzheimers! It is a new experience for me. My daughter is much better at it!
🙂
It is so bizarre that today of all days you posted this Ariane. I literally just had a conversation about this with someone. I shared what amazing language the student was demonstrating in our sessions (using DIR). I shared their scripting was very purposeful and they were clearly sharing thoughts with it. The other person involved looked at me increduloudly and shared that all the student did was script, and that that had to be redirected. This is a re-occuring theme with so many that work with kids with Autism, and it makes my head spin!
Also, ‘Leaning in’ is such a great term-sometimes you have to do that in order to figure out the message…but that requires time, patience, and the presumption of competence which many simply refuse to offer.
Ugh… that response of the other person is so incredibly disrespectful. It’s really upsetting how hard it is for some to presume anything but incompetence. That seems to be far easier for people…
Win win win win all the win yay flap I flap for all of you awesome family of win!
((((Ibby))))
I love that concept of “leaning into” their words- have tried to do that for years, could never coin a phrase for it. We are slowly getting word approximations now and some spontaneous speech. It’s word by word, but it’s exhilarating. Your girl is so courageous!
Really glad to hear of the progress. And yes she is! Yes she is!!
“Use words I want to hear. Use words I give you, but don’t, please don’t use YOUR words.”
THIS. I run into this especially with therapy, of all places. I’m constantly looking for words that will be acceptable to the therapist. Like emotion words, which are my biggest pitfall. In the past, I would simply grab an emotion word out of thin air and see what response I got. Then I started learning which emotion words got the most positive response (angry scores BIG TIME, so does painful, do not use confused under any circumstances). Now I’m slowly starting to reverse that process. Therapy shouldn’t be about using the words that someone else wants to hear, not even when they’re looking dismissive or keep on asking and prompting.
Oh wow… has this happened with every therapist, or just this one? Maybe it would be good to see someone else? That sounds like the exact opposite of what a therapist should be doing.
I don’t think they understand that asking me how something makes me feel is akin to throwing a wrench in my gears. It’s happened with all of them so far.
Would you be able to tell the therapist this? It seems that a really good therapist would want to have this information. Asking about feelings is such a non autistic thing to do!
I had a therapist as a teen who was convinced I felt like I didn’t have permission to feel negative emotions. Not exactly true – I felt I didn’t have permission to express negative emotions, plus I also had difficulty identifying them in the heat of the moment.
But once she got on that horse of “giving permission” for me to feel, I couldn’t get her to believe that my “I dunno” was honest.
Therapist: How do you feel when you think about kids making fun of you?
Me: *squirm* *shrug* I dunno.
Therapist: We’ve been over this. You can feel anything you want. How does it make you feel?
Me: I dunno.
Her: You have to work with me on this. I can’t help you if you don’t let me.
Me: I. Don’t. Know!
Her: Obviously, you don’t feel like sharing, so why don’t we move on to something else?
Frustrating, to say the least. Thing is, I’m much better at identifying what I’m feeling after the fact. Ask me what I’m feeling right now and I’ll usually either answer over-literally (“My ankle’s a bit sore, ‘cuz it’s sprained”) or with a shrug and an “I dunno.” Ask me what I was feeling yesterday, and I will be more likely to be able to tell you.
Oh yes, I got the “ignore her when she says things like that” advice from a speech therapist one time. So glad I ignored her. Of course it means something! If only that my child is remembering something important that happened and reliving it (but quite often it is an attempt to communicate, or a gateway to start communicating with her). Now I say…Oh, do you want? or, Oh, I remember that, and then I relive it with her. And she looks at me with the biggest smile. Connection through echos from the past…otherwise known as shared memories.
“Connection through echoes from the past…” I love that. We get a lot of that too. Also repeating some of the favored “scripts” at appropriate times makes her and us laugh. One of which (one of my favorites) said in a loud scolding voice, “Get down, Angelo!” this we say whenever we are going somewhere and need to stay together.
Thank you for telling us more of Emma’s amazing and courageous journey. When I heard “use your words” it stung me , as I read it my voice echoed the words in my head and it was my voice I heard.
Oh Dave… the things we internalize. I have a “use your words” voice too, it says different things to me, but they are always painful to hear.
Thanks, I continue everyday learn more about the complexities of Autism.
I love the words of Colin Bowman! “My sense and judgement is, that language usage is about expression and realisation, expression and realisation that is really self-expression and self-realisation. It then seems to me that intention is the big dynamic. What are our Emma’s doing and intending as they use language. It’s then crucial that we resource our moment of recognition of that intending. If we get that right, then we allow our Emma’s recourse to generative language usage. The fulcrum and crux of generative language is the sense of having a recognised self. When we have sense of our recognised self, then we unleash exploration across that self; and all else in development follows. The work of recognising the intending and doing and emerging self of our Emma’s, is our work. Failing here, is our failing. I’m grateful for the idea and insight that echolalic language usage is natural autistic language usage, it functional across autistic occurring.” I’ve never heard a better description of intentionality! Thank you, Colin!
First I want to say,”Your Emma is Beautiful”…I also want to share that one of my Grandson’s has been saying something to me for over a year and it sounded like drsuess..One day he had watched” Horton hears a Who” and “The Lorax” and I realized he was saying Dr. Seuss ..He was trying to get me to put one of the movies in the DVD player for him. He knew what he wanted but I could not understand. He continued to say it the same way until I said to him Dr. Seuss and he repeated Dr. Seuss and now I know.. He has also said to me what sounds like “Loudy” and what he wants is “Cloudy with a Chance of Meatballs”..He keeps trying to communicate and when I figure out what he is trying to say to me it is so rewarding for him and me. We are communicating , he understands I understand with each word. When he initiates the speech and I understand we are all making progress.. He is 6 yrs old and a wonderful gift..Love him..
Thank you so much Nancy, I think she’s beautiful too!
Wonderful to hear about your grandson, he sounds pretty fabulous too!
Communication is Communication in whatever form it takes..In the early days I never knew if I would ever hear his Voice.. now I Hear “Gramma” and that is one of the sweetest words..If he is talking then I am listening and asking for more words..
I can so relate to this post. When my son started to talk he used words that he related to what he had experienced at the time. He still does that a lot, but is much easier to understand now. For instance, he would say “Don’t rub your eyes” for “My eyes itch”, because that’s what I’d tell him when his eyes were itchy. He would also say “I know , I know” in an understanding voice when he was distressed, because I would tell him “I know I know” to tell him I understood he was feeling distressed. He uses echolalia to express feelings and thoughts he felt when he watched a film, and the example of a child using a ‘pink dress’ ‘blue dress’ for ‘choice’ is something we can relate too. When I understand what he means, I can easily model it by making it clear I understood him and modelling it. The main thing is to find a way of communication, and yes, we all have to learn each other’s language.
The episode on the bus must’ve been very stressful, it’s good you were there in the end to tell here that she did everything right xo
“I know, I know…” Yup, exactly the same here!
Some of the coolest and most in appropriate comments I have ever heard have been the dreaded echolalia. It’s communication and since for a lot of kids the vocabulary in it is pretty big I just don’t understand why it worries everyone so much.
I had a friend. She did a great job raising her autistic daughter but when the process and what was right and what wasn’t was newer I visited for a few nights. The child and I shared a passion for watches and she would endlessly say my name and watch. The mother would grow apologetic but the girl was coming from the next room to do it, tugging at the arm with my watch on it until I surrendered it and agreed, bringing it back. The game grew more elaborate sometimes the child’s doing and sometimes mine. It seemed to me like a therapists dream not nightmare as here she was seeking social contact about a shared interest over and over again. Altering a game, knowing enough about who she was playing it with to know they would follow etc… It was beautiful and any autism “expert” at the time would have extinguished every bit of it. My friend thankfully suspected from the get go that pure ABA was damaging and used what worked but an expert can be a hard thing to go against.
Granted when the next day the kid’s idea of seeking social contact after I kept nodding off during finding Nemo (I never sleep the first night at a place other than home) was to drop the cd case on my head repeatedly and instruct me to watch nemo it was still communication and still social but I found it slightly less charming.
We’ve had similar experiences of “seeking contact about a shared interest” only to be told it was inappropriate or not as meaningful as we believed.
After reading your comment I began to fantasize about you having a laminated card that you held up whenever people spoke about you when you’ve lost speech. The card would say, “Stop using your hurtful words.”
They would likely ridicule the card since no matter what my doctor writes about the possibility of my losing speech under stretch or it getting worse if they were the sort of people who could grasp that speech isn’t binary I suspect they may be able to grasp other realities that wouldn’t make them so unthinkingly cruel in the first place.
For me, the big issue with “use your words” is that it makes three big assumptions: That the child has the words they need to express what’s going on, that they consciously know what’s going on (not necessarily the case if the kid has trouble consciously identifying emotions and wants), and that they have access to their words.
Right. It doesn’t make any logical sense to say this to someone. It reminds me of when I’ve been really upset and some well meaning person says, “Don’t be upset.” I already AM upset. How is this directive helpful?
For me, more helpful if you-as-wordy-person don’t understand would be a statement of your non-understanding followed by a request that the other person word it if they’re able and/or offering words for what seems to be the problem would be a lot more helpful.
And imperatives to do stuff you can’t do are never good things – whether someone’s demanding you not feel stuff you’re already feeling or use words you can’t access or complete a task you have no idea of how to complete.
I love this post. It expressing my feelings about talking. It is all about communication. Am I understanding you when we talk? Are you understanding me? If so then it is all good.
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Thanks for the insight!
Reblogged this on jannabeeblog's Blog and commented:
Definitely something to think about!
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