Demanding Speech

Over the weekend I witnessed a young man who did not easily speak and when he did say a word, it was clear how hard he was having to work for that one syllable.  Yet the people around him bombarded him with questions.   Questions he could not answer with spoken language, but that did not stop them from asking.  When he managed to make a sound resembling the answer they wanted, they would pause for a moment before asking him another question.  After about ten minutes of this he retreated into what looked like a sensory friendly room, where he rocked gently back and forth, holding his hands over his ears.  Even so, the questions continued.  

Another boy who was having his lunch was told during a ten minute time period to “look at me” more than a dozen times.  He too could not easily speak and was asked a great many questions.  Things like, “Is that good?” When he said, what sounded like, “Yes,” the other person said, “Look at me.  Stop.  Put down your fork.  Look at me.  Is it very good?”  When he again said, “Yes,” he was allowed to eat his lunch for a few seconds in peace before the next question came.

People often ask me why I object to ABA therapy.  It is not only ABA therapy that I object to.  It is ANY therapy that treats another human being as these very well-intentioned people were treating these young people, all of whom were teenagers.  I object to the way so many, who are in the field of autism are trained and how that training  affects how they speak to and interact with people who are autistic.   I do not, for a moment, doubt that they believed that what they were doing was good and ultimately helpful to the kids they were working with.  Yet each one of them was unconsciously or not, treating those kids as though they could not and did not understand what was being said to and about them.  The kids were not being treated as one would treat their same age non autistic peers.

On the Presume Competence – What Does That Mean Exactly – post I wrote, “What I have come to understand, is that a presumption of competence is much more than a set of beliefs, it is a way of interacting with another human being who is seen as a true equal and as having the same basic human rights as I have.”

What I saw was fairly typical of what I see often – well-meaning people who are working with autistic people, but who do NOT presume them competent, not really.  Had I said something to any of these people, I’m sure they would have expressed surprise with my observations of what they were doing and how they were interacting.  I would even guess that they would have told me that they were presuming them competent.  These were not mean people, they were not sadistic people, these were people who believed in the training they’ve been given and believed this was the best way to interact with these teenagers.

At one point the young man who was trying to eat his lunch, looked over at me and my son.  My son, smiled at him and I did a little wave and said, “hi.” He nodded his head ever so slightly at us and then the person who was paid to sit with him, asked him another question.  I do not doubt for a second that all the kids there were competent.  In fact I am convinced of it.  I know it to the core of my being as I have been around so many people who cannot speak, or who can speak, but not easily or naturally and who are all competent.  But this was not how they were being treated.  This idea, which is popular with a number of therapies, not just ABA, that we withhold desirable things until the person speaks as demanded, is not something I agree with because it is based in a presumption that wanting something is equated with ability and this is incorrect, even if it obtains the desired result – a verbal utterance.

Until Emma began to write, using her letter board, I had a great many thoughts about her that have proven incorrect.  Until she began to express herself through those words she painstakingly spells out, I was not treating her as the exceedingly  competent human being that she is, even though I often thought I was.  Even now, on any given day, I do not do this as well as I’d like to.  All those years of ingrained thinking are extremely difficult to change.  But change I must…

A Renassaince Princess

A Renassaince Princess

33 responses to “Demanding Speech

  1. Every picture of Emma is more beautiful than the last!

    Thank you for this reminder about what a presumption of competence does and does not look like. So often, professionals say they understand autism and Autstics and so fan they make their words a lie with their actions. I love to read what you write because you really do understand. Thank you for being who you are.

  2. (So often, not so fan. Typing on the iPad with autocorrect.)

  3. It’s good you have empathy for others on the spectrum. Too often it seems parents only see their own kid’s strengths and issues and/or jump too quickly to a “my child is a genius” or “my child is different/better than others” mode. To understand the spectrum is to realize ALL have potential.

  4. I think I could, and should learn from my grandma. She was here for a week, as my aunt had hurt her knee, and grandma at 91 is prone to falling. While she was here, she spoke to E just like any other kid, to which my mom at some point told her “mom he doesn’t understand” I had to tell her No, that’s what WE should be doing. As much as i try to presume competence, E has become a new normal to an extent i dont know how one would treat an allistic 4yo…i dont know what its like, I’m literally shocked when little kids speak. So i needed that reminder…an outside person to come show me how it’s done.

    On a secondary note i wrote the other day about the place I am in…a place it took me a few years to get to. If E never talks…well, I’m ok with that. Because he loves me and shows me he does, with everything he is. I’d rather have that any day than a dispassionate rote memorization said in exchange for a snack.

    • Camelynelayne….I totally understand your feelings of being shocked at how well other 4 year olds speak. For a while I lived in a little bubble of just my ASD son and my NT daughter (who is younger than my son). Whenever we would get around kids their age, I would think, “oh….crap” my kid is so “behind”. Then he started 4 year old kindergarten and that was another shock to the system because he was in a class of four year olds. Now, it doesn’t bother me. He is who he is and he will develop at his own pace. One thing that does help me treat him “typically” is to think of a friend’s son who is one month older than my kiddo. When I am not sure how much information to give him on a topic (for example) I think about how much info this other kiddo could handle and understand, and use that as my guide. That and watching how other parents of 4 year olds interact with their kids.

  5. Sometimes when very frustrated in medical appointments – the place I appear the most incompetent – i say “I’m not as stupid as I look .” This makes good people stop in their tracks. It makes presumptuous pompous a**** smile condescendingly. This is how i determine who I will deal with in that moment. Pompous a**** be gone!

  6. I get this sort of attitude a lot, not just from therapists but from teachers, even sometimes from family members. And the most painful part of these attempts to help me is constantly being made to feel anxious about what i’m doing, because it might be wrong. You’re never allowed to just be yourself, you’re constantly under treatment, so to speak. And when you do manage to act correctly if even for a small moment, even more pressure is placed on you to keep the façade. My speech has actually deteriorated in recent years due to increasingly failing to communicate at the ever heightening level expected of me.

    • Oh, wow. All kinds of memories of how I felt growing up just came flooding back. You nailed it with the constant anxiety — it felt like I was always being called out on what I was doing wrong and, too often, everyone else was doing the same things I was getting yelled at for, but no one yelled at every one else, just at me.

      My support worker is good about presuming competence but she still has a lot to learn about agency. Many days, it seems all we do for her whole visit is bicker because she thinks she has a better idea of what I should be doing, how I should be doing it, and what my goals and priorities should be than I do.

    • 😦
      I have had the experience of being “directed” by another and after awhile they made me feel completely incompetent to do anything “right” and this was as an adult! It is a horrible feeling. Constant criticism, admonishment, testing, being bombarded with questions that seem to have a “right” and “wrong” answer are not helpful to anyone.

  7. YES! Just met with a new typer last week and as I often do, I asked them to comment on their school experience. Response was negative as it often is, so I asked what should be done: TEACHERS SHOULD GO BACK TO SCHOOL AND LEARN HOW TO DO IT RIGHT. As a former teacher who really tried, I know I made a ton of mistakes and I feel compelled to apologize to students everywhere from all of us who are such slow learners!

  8. AMEN! So well said and so needed!!

  9. I’ve seen things like this going on in the special education schools where I’ve worked or observed, both with kids who could or could not speak. Sometimes it seems like teachers and staff are just being rude and harsh to the kids! I know they say they are simply holding the kids to high expectations, or pushing them to do their best, or whatever. But things like demanding eye contact or demanding that a kid take his hands off his ears? That is trying to force the kid to APPEAR like everyone else, instead of helping them to succeed as individuals.

  10. Love this post.

  11. This is so right on Ariane. Why would any special educator be taught to ask questions only to elicit a preferred response. I think there is something about this that is inherent in our education system, and it is why aba has always been a fit. If we only took the pressure of learning off, and let people learn how to genuinely interact. No one is lesser-everyone deserves to be treated with respect, and it’s this top down way of speaking and relating to children, with spectrum kids getting the worst of it, that needs to change. I wish the advocacy community moved with greater fervor in this direction-because it affects all children regardless of diagnostic labels.

  12. Great observations you made.
    I have seen similar with the aide that works with my son, hurrying him and prompting him too fast so that he doesn’t get the opportunity to do what is asked, taking him by the elbow instead of talking to him and giving him time and space.
    It bothered me at the time and still does. And like your observation the person doing it with my son, is a nice person with the best of intentions..she is just doing it wrong I think.
    I’m not sure what to say or do, as it feels intrusive and overbearing to tell someone how to do their job differently from how they are doing it.
    Perhaps saying something like “I find that my son responds best at home when..” would be a tactful approach

    • I don’t know if you are open to a suggestion, but if you are, read on and if not, just tell me and I’ll trash what I’m about to say…

      Absolutely tell them! All of these people are being PAID to help our children! If it isn’t helping, do not allow it to continue!!

      I wonder if they would be open to seeing how the insistence to speak, for someone who does not come to speech easily or naturally is very, very difficult and requires a great deal of energy, if it’s even possible. Perhaps if this therapist understood better what it might be like for your son, she might take more care and time in how she approaches him. Also insisting that speech is the only way he is allowed to communicate, without giving him the option to learn another way, will likely increase his anxiety… just a thought…

      • The anxiety was not really noticed in Brooke until she was about Emma’s age partly because she couldn’t talk and if she cried it always seemed to be her ears or stomach( which I couldn’t seem to get any help for) until….the male teacher told my husband to make her tell us what she wanted. My husband thought he was doing a great thing by saying Brooke tell me what you want to do. She would take us to the locked back door and twist the knob and place our hand on it to let her outside. My husband per the teacher’s advice would say tell me what you want to do and I will take you out. Brooke would grab her neck and act anxious but eventually she said outside. I was practically in tears everytime I watched this exchange. I would say you know what she wants but my husband was told to give her what she wanted when she said it. It was this particular school year that Brooke had a sore throat and fever, so I had to treat her with antibiotic and motrin. Well of course the sore throat and fever went away but the next week she had a stomach bleed. Finally I was going to get help for her stomach because she had a serious problem. She was hospitalized immediately and an endoscopy was performed. Do you know what was found??? Too much acid, so much that her stomach has like a million tiny ulcers where the acid had eaten it (not the h. Pylori) type just acid erosion and the Motrin had caused her stomach to bleed because of this erosion. Now before I was a teacher, I was a medical technologist and there was no known reason for this acid overproduction as a matter of fact they expected to find problems with her esophagus not her stomach. I am 100% positive this acid overproduction was due to untreated anxiety which was being mostly caused by well meaning adults trying to make her talk, so please don’t ever think like I did that Brooke seems happy so she couldn’t possibly have anxiety. Everyone else in our family has a history of anxiety so why wouldn’t she? I don’t like conflict and I worked for the school system that was provding services to Brooke so I was afraid of retaliation sometimes but I would make my husband fight for her and if I was passionate enough about something then you better believe I would say something. Ariane you are showing so much strengh by empowering others to stand up for their children, esp. With the school system. I never wanted anyone working with Brooke that I didn’t feel comfortable with because she couldn’t tell me what was being done to her. We have fought injustices for Brooke and had her removed from various classrooms and schools over the years. I love Emma’s writings and your blog. Thank you for sharing. I just wanted to add my horrible anxiety story about my nonverbal daughter now 20. Diane (Brooke’s Mom)

      • You’re right of course and I will talk with them.
        When I drop him off, they get him to do little tasks like get his lunch box and drink bottle out of a bag and put them on a shelf, put his name badge on a velcro board, all of which is a good idea I think, but if he doesn’t do it or is slow, they hurry him up which is the opposite approach of what they should do in that situation I believe.
        Actually he’s completely unable to speak and while he has limited communications with his iPod that in itself is not that easy for him, and so the same principle applies as hurrying someone who has difficulty in speaking, or processing information which I think is more the issue.

  13. Good that you noticed that behavior, not speech, is a better indicator of true beliefs. (Spoken by someone who’s but recently learned to tell the difference…Got burned more times than I can count in the process)

    However, I do have something of an issue with the following:

    “Had I said something to any of these people, I’m sure they would have expressed surprise with my observations of what they were doing and how they were interacting. I would even guess that they would have ***told*** me that they were presuming them competent.”

    True, they would have told you that. They also would be LYING – first to Themselves, and then to you. Their behavior is the giveaway, for people ACT in accordance with what they believe – and their acts, which were presuming a lesser-being status, would NOT match what they would have told you.

    ” These were not mean people, they were not sadistic people, these were people who ***believed in the training they’ve been given*** and believed this was the best way to interact with these teenagers.”

    Ever wonder just ‘why’ someone would *buy* such dehumanizing training? One reason is that it’s inline with their already-existing concepts – it confirms their preexisting biases and thinking, which is a key secret to how Dale Carnegie’s book ‘How to make friends and influence people’ actually works.

    I’ve but recently been getting glimpses into the subconscious – something I honestly wonder if I actually have; if I do, it’s rather different from what seems commonplace among the people I observe – and it is NOT pretty.
    It seems the rule that ‘powerless invites predation’, and ‘lesser beings deserve to be punished, for they have chosen to be as they are’.

    What you’ve done – chosen to ignore the whim of instinct – is much more than commendable. I heartily wish your thoughts on the matter were the rule rather than the dire exception.

    • Dennis – Words cannot/do not suffice, sorrow isn’t enough. But I wanted to reach out to you and acknowledge your words as received by another… another human being.

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  15. oy how can you eat when somebody is asking you questions every two seconds! the poor kid just manages to get a bite in his mouth and already another question!

  16. I linked to this on my fb, and my friend read it, and came back to me with a question, which just shows how much things can evolve – she wanted to know how to address my kiddo, if asking him how he is would be putting too much on him, but that she did not want to NOT acknowledge him – I had to stop and think for a moment, but (and I hope that he approves) I told her that talking to him and just saying that she hopes he’s well and that she’s happy to see him would be a nice transition away from asking him to respond (in the rote way he’s been expected to at school) – and I will add that we have been incredibly lucky in our neighbors who are also our friends.

  17. It was so great to read this as I just wrote a post this last week about ABA therapy and it wasn’t very positive. It’s the same for me, I’ve made many assumptions about my son and I’m working on changing those. I hope that someday my son will be able to communicate with me and help me understand him more…but until then I will gain all the information I can and be his strongest supporter. You and Emma are helping me be that to him.

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  19. “…because it is based in a presumption that wanting something is equated with ability and this is incorrect, even if it obtains the desired result – a verbal utterance.”

    And this presumption is exactly the problem with SO much of speech therapy (and ABA) today. Therapists are teaching others this false presumption, and others might not know better, so they withhold things and wait for the magic word(s). Even if the words are empty. Even if they mean nothing. Teaching a child to “talk” is not respecting the child for where they are in their process of life. Encouraging communication, and relationships, and engagement…that would be respect.

    “I do not, for a moment, doubt that they believed that what they were doing was good and ultimately helpful to the kids they were working with. Yet each one of them was unconsciously or not, treating those kids as though they could not and did not understand what was being said to and about them. The kids were not being treated as one would treat their same age non autistic peers.”

    You are kind Ariane. I have stopped caring about what other therapists, who are clearly doing harm, believe. It sounds very blunt to say this, but it is true. Not believing you are doing harm, but doing it anyway, does not make it ok. We are obligated as therapists to constantly self-reflect, to constantly re-assess, and to take an objective look at what we’re doing and examine if we are truly supporting a child, or if we are simply going through the motions. It is not ok to treat the Autistic kids as though they are an anomaly, as though they don’t “get it” and as though they need to be “taught” every little minute detail.

    You hit the nail on the head, so to speak, as usual. Bravo for a beautiful article.

  20. Pingback: when parents accept autism, the world will too | lovin' adoptin'

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