Transcript for Episode 9: The Power of Presuming Competence with Non-Speaker AAC User
Interview between Speaker 1 (Meg) and Speaker 2 (Ido)
Hey, Meg here. A quick note before we get started. I got some feedback from one of my autistic listeners. She said, "I love the podcast, but I hate the music. The intro music and the commercials, it's too loud. It's too high-pitched. And I think other autistic people probably feel the same." So, I want to hear from you.
If you are on the spectrum, how do you feel about the intro music and the commercial music? Does it need to be quieter, does it need to be different altogether? E-mail me, email@example.com. And if you do find it aversive, quick note — I haven't changed it yet, but I will. So, if you want to skip the intro, it's coming up next. Hit the skip forward 30 seconds button on your podcast player and you'll skip right to the interview. Thanks for your feedback.
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.
Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 9! In this episode you’ll hear my interview with Ido Kedar. Ido is an autistic-self advocate, an advocate for non-speaking people, a writer, and a college student. He is a non-speaking autistic person who uses a voice-output typing device to communicate. After having no way to communicate for the first seven years of his life, he learned to spell and eventually to communicate. He’s written a non-fiction book, 'Ido in Autismland: Climbing out of Autism’s Silent Prison' as well as a fiction book, 'In Two Worlds'. Ido’s books are poignant, insightful, and at times quite painful.
In his non-fiction book, 'Ido in Autismland', Ido shares his experiences in the world and his perspective through a series of short, insightful essays. He talks about his perspective, his experiences, his joys, his frustrations, and his relationships. In his novel, 'In Two Worlds', we follow a young non-speaking autistic boy, Anthony, as he is misunderstood and underestimated by everyone in his life. Though speaking is not within his reach and his movements are not under his precise control, he is bright, competent, empathetic, passionate, and chronically frustrated by being spoken to like a toddler, and presumed to be incompetent. Following the journey from Anthony’s perspective is at times heart-wrenching and painful, and at other times fascinating and joyful.
So one thing that’s come up again and again on this podcast is the need for non-autistic people to learn to take the perspective of the autistic people in our lives. One of my favorite passages in Ido’s novel is when the fictional character, Anthony, after being drilled on emotion flashcards by his behavioral therapist, grumbles internally, "Maybe I need to get them some flashcards so they can learn to recognize my feelings." That is exactly what we are here to do.
Ido’s books are a must-read for anyone hoping to better take the perspective of non-speaking autistic people. So for this interview today, I provided Ido the questions for the interview in advance, and he recorded his answers by typing them — which he does independently using a keyboard — before the interview. So you’ll hear the voice output from the device he uses to communicate. Ido is insightful and eloquent, and I know that this interview will profoundly impact your understanding of autism. It certainly did mine. Here is the interview.
Hi Ido, I’m happy to have you on the show!
Ido: Hello, Meg. Nice to talk with you today.
Meg: It is so nice to talk with you too. All right, I'm going to jump right in. You had a number of therapies when you were a young child, before you had a communication device. Can you tell us about your early experiences in occupational therapy and speech therapy, as well as your experience in intensive ABA?
Ido: My early experiences are vividly described in both my books. My memoir, 'Ido in Autismland', I wrote between the ages of 12 and 15. I was the only mainstreamed non-speaking autistic student in my school and likely in my school district, so as a pioneer it was important for me to educate and try to help others, which is the reason I decided to write the truth about autism. I published my novel, 'In Two Worlds', when I was 22. I hoped to make the experience of autism more relatable and to try to help readers experience what autism is like through Anthony, the protagonist. The two books together should give the reader a much deeper understanding of autism and the inner experience of an autistic child.
I can honestly say that my early years hold no fond recollections of therapy. The ladies who worked with me may have been nice, but they did not understand me or my disability at all. This stems from a profound misunderstanding of the nature of the disability. I understood everything people said and always did. I have no language processing issues at all. In fact, I understood language at a high level and read at an early age. So baby talk and flashcard drills were torture, honestly. The problem I have is motor, not cognitive. My brain and motor system don’t communicate the way they should. This leads to erratic motor performance and quite literally, entrapment in one’s own body. If it is a helpful consolation to the OTs listening, OT was the therapy I hated least. I enjoyed the trampoline and the obstacle course. The other therapies, speech and ABA, were not fun in the least nor helpful.
Meg: I think that's a really important distinction that you make, because often people say, "No, ABA can't be that bad. I know an ABA therapist and she's really nice." And I hear you saying that the problem isn't 'nice', the problem isn't 'intentions', the problem is 'what is their understanding of autism, and what are they actually doing, and how does that feel for their autistic clients?'. So, when you were 7, you started communicating by spelling, pointing to a letter board, and then eventually typing. How has being able to communicate by spelling changed your experiences and relationships?
Ido: It is important to realize it is a hard skill to acquire. It is not just learning typing. It is learning to scan, look, touch the desired letter, and be accurate and reliable. It takes practice and highly skilled, specialized instruction to type your thoughts. This is different from copying. Obviously, once I began to be able to communicate and express my thoughts, there were huge changes at home. Everyone talked to me normally from that point. What a relief! I got normal lessons and books. Expectations rose. I was happier.
Unfortunately, my ABA team could not adapt. They were unbelievably rigid in their thinking. I guess I could call them dogmatic and closed-minded. Therefore, my ABA happily stopped then. Most significantly, I had hope for an education. It took a few years to convince the school district to allow me to learn, but eventually I became a full time general education student in honors and AP classes, and graduated fourth in my high school class. You must understand that opening communication improves many things but autism remains a challenge forever.
Meg: You know, that's interesting. One thing that non-autistic people often say is that, "Autistic people are rigid and have trouble changing routines or beliefs once they're formed." And I hear you saying that you were being flexible and learning to communicate in every possible way that you could, and your team was rigid. They couldn't adapt and listen to you, and let you show them who you were and what you needed.
I want to talk a little bit more about your strengths, because we know that autism isn't a cluster of deficits or just a series of challenges. It's a different learning style that also brings it's own strengths to each individual in different ways. So what do you see as some of the strengths and positive attributes that your autism brings to you?
Ido: Autism is living in silence and observing everything. I philosophize, analyze, and problem solve in my head all day. I do math equations in my head. I think about religion and hope for better days. I mull over my ideas uninterrupted by others. I guess I have the advantage of thinking without distraction. The disadvantage is that this is kind of isolating and lonely. Not talking is hard. I don’t type as much as people talk. It is slower and harder so I don’t rattle on like others do.
Meg: Let’s talk a little bit about labels. A lot of OTs are slowly but surely coming around and saying the phrase 'non-speaking' instead of 'non-verbal'. You're a great example of this. You're obviously highly verbal, you just don't speak without your device. But I want to talk about other kinds of labels as well. You were labeled 'low functioning' many times in your life. Can you talk about the impact that this label had on you, and your opinion on 'high and low functioning' labels in general?
Ido: I hate these terms. They are degrading, in my opinion. My mind is high functioning but my motor disability is intense. Others may have more motor control but less intellectual acuity. Why do we pigeon hole people anyway? To label someone low functioning means that expectations do not exist. The label diminishes hope. The average so-called 'low functioning' individual has little hope of change because the label blinds people to his potential. You can see this vividly in Anthony’s story in my novel, 'In Two Worlds'. It is important to know that every typing non-speaking autistic college student was once called 'low functioning', so what does it even mean?
Meg: That's really profound insight. I actually hadn't taken the time before you said that to reflect on what it would do to my own self-image if I had to live up to a label like 'high functioning', or be confined by a label like 'low functioning'. I think that your experiences really speak strongly to how badly we need to move beyond these types of labels. I want to talk a little bit about your sensory experiences as well. In your book 'Ido in Autismland', you write a little bit about this in your essay, ‘Internal & External Distractions'. You talk both about how your sensory experiences can joyful and harmonious, and also how stressful sensory input can be. I’ll read a passage:
“It's hard to concentrate because my brain is full of distractions. If I try to do a game or puzzle, it's hard to complete it because it has to interfere with my internal stim world. I am attracted to visually harmonious sights like water in the sun, or lights blinking. These light my senses. I have to stop and look; it's so artistically awesome. Though I'm sure others can't see what I see and wonder why I stop, stare, flap to see these sights, I see woven patterns of shapes and colors. No one who sees this isn't amazed at the lovely details of the lights.
“I can't stop my senses. No one can. But mine overwhelm me. I hear my dog bark like a gunshot. My ears ring and I lose focus on my task. Tiny sounds are like soft buzzes I hear long after they have stopped. My hearing has advantages too. Boring lectures roar into street sounds so I tune them out. I can overhear interesting stories because I hear through walls into other rooms. Whispering is no defense. I have supersonic ears to eavesdrop.”
We also get to follow Anthony into an OT sensory gym in your novel, 'In Two Worlds'. After he goes through a dizzying circuit in the sensory gym, wishing he could just jump on the trampoline, but instead being moved through each piece of sensory equipment, he makes this observation about Haley, his fictional OT — he says, “In Haley's world, everything he did had a cause. Vestibular, proprioceptive, seeking this or that. Yes, he got feedback from the trampoline, but couldn't something in his life simply be fun?”
And then there's a scene during Anthony’s OT in the sensory clinic when he's put inside of a swing and becomes really overwhelmed. I'll read another passage: "The tightness helped him with his sense of propriception, or sensory awareness, but he had these horrible neural pathways, which instead of taking the sensory input of tight pressure gradually like a normal system would, quickly overflowed and the input became sensory bombardment. Anthony panicked. He began to struggle, frantically trying to get out of the hammock that enveloped him tightly, like quicksand. Haley ran to try and center him. ‘It's okay,’ she told him, ‘Let me spin it to try to calm him.’
“Haley was guessing. She had no idea why Anthony was out of control so suddenly. He began to twirl, feeling helpless and trapped. In the hammock, his body finally began to regulate itself, gradually. He felt less bombarded by the pressure as his body acclimated. He made little squeals hoping to get out, but Haley twirled it more."
Can you tell us more about your sensory experience of the world? What else do you wish OTs and others in your life understood about how you process sensory information?
Ido: This is important and a huge issue because therapies have been designed without the input of the recipient. I think it’s fair to say I have kind of an unfiltered input. So much input bombards me from multiple senses that it is a lot of work to be balancing them all. I suppose many so-called 'autistic behaviors' are coping strategies to deal with the overflow. You can see how bombarded many kids are. They cover their ears and scream in pain. They look at the same video ten million times to create a familiar pattern in a constantly moving world.
However, this coping strategy can make many people confused into assuming the person watching the videos thinks like a baby. I know adults who cope with stress by watching the same videos they watched since childhood. I tend to watch cooking lessons, but others may watch Teletubbies. It isn’t because their thoughts are infantile. It is because Teletubbies are predictable. The main issue for OTs to consider is to let their clients adjust to the movements and environment. Please use normal speech, and please work on fitness and strength.
Meg: So what I'm hearing in that is that we need to be seeking input from autistic people — our clients, when possible, and others if not — about what types of interventions we're doing; and we need to be learning from the person who we're working with about how what we're doing is landing with them; and that we also need to be aware of sensory bombardment and how that impacts our autistic clients; and also understanding the actual purposes of stimming and what functions they are serving for our autistic clients. What advice would you give to therapists who don't have a good understanding of stimming, and are even writing goals about suppressing an autistic child's stimming?
Ido: Did you ever ask yourself why the person is stimming? In other words, might it be more than a so-called 'behavior to be corrected' and instead be a form of emotional release that communicates something? I think observing the child and getting to know them is important. I resented greatly what I thought of as 'The hands quiet police' when I was young.
I flapped my hands because I couldn’t express my feelings verbally but no one ever wondered what my feelings were — in school, ABA or other therapies. I might have been frustrated or upset, but no one bothered to do more than 'Hands down, hands quiet' commands. My advice is to not be like that person. You are dealing with people who are trapped by their motor system. If you were in that situation, how would you wish to be treated?
Meg: So that really goes back to the whole premise of the podcast, that we non-autistic professionals need to do a much better job at taking the perspective of our autistic clients, and imagining what the experience is like from their perspective, what they need, and how we can help them get their needs met. And absolutely, we need to move beyond any and all goals around suppressing stimming, and really move towards how we can empower our clients and support them in feeling happy and well-regulated, whatever that looks like for them.
With the challenges you’ve experienced with things like motor skills and executive function, what types of interventions have been helpful to you, and which have been less helpful?
Ido: Two things have been particularly helpful. Regular exercise like hiking, treadmill, bike riding, or any kind of workout, wakes up the mind-motor disconnect. I think you should start exercise young to help with motor planning and do it gradually. Lots of kids can’t motor plan, even to do simple things like jumping forward, or to do the apart-together leg work of jumping jacks.
It is important to help them to be able to instruct their bodies for the simple movements before jumping to the hard, multi-modal stuff. They need to succeed, not fail. Besides communication, the other helpful thing is practical skills. I mean, putting shapes in holes is pretty boring, but cooking, or brushing your teeth, or learning to tie your shoes is useful. Maybe OT clinics need a naturalistic homelike space too to address these useful movements.
Meg: Thank you for that. That's so important. I remember about 5 years ago reading a story that came out of UNC Chapel Hill's TEACCH Autism Program, where they had found a bunch of files in a closet from the group of people who they had first diagnosed as autistic as children back in the 70's, and those people are adults now. And they looked at all kinds of adult outcomes — were they happy, were they satisfied with their life, were they in relationships, did they live on their own, were they employed — to see what in childhood predicted those positive adult outcomes. These were psychologists doing the study and they expected to find things like how much the child spoke as a child, or what their level of behaviors were as deemed by the child psychologist, or things like child depression scales. What they actually found was that adaptive life skills, like what you're describing, were the strongest predictor of positive adult outcomes. And I'll to that study in the show notes as well.
So what you're saying is so important, that we need to not get away from teaching these real functional daily living skills that our clients have to do every day. So, of everything we talked about today, what's one thing you would like to see OTs start doing, or do differently, in their work with non-speaking autistic kids?
Ido: Well, I think I’ve given a few suggestions. But I would like all of you to read the words of non-speaking autistic people who type to communicate. There are a number of books out there. If you managed to complete a graduate program never hearing our words and only those of non-autistics, or those of people with different issues, then you are listening to the wrong people if you want to understand the non or limited speakers better. I wrote an Autism Experience Challenge on my blog to give people a better understanding of what it is like to have autism. May I share some of it?
Meg: Yes, absolutely.
Ido: There are 8 steps. I’ll share only the first four to give your listeners a taste. Here goes.
• Mark out a period of time — anywhere from 3 hours for a shortened version, to 3 days for the fuller experience. You will not be allowed to speak verbally during this time, no matter how much you want to.
• You must designate this time to take place when you will be around people. There is no benefit to this exercise if you will be alone the whole time. Your friends and relatives should know what you are doing prior to the exercise so they aren’t worried and can do their part in the challenge.
• To be authentically true to the autistic experience, I need to deny you alternative means of communication. You cannot gesture, point, write, type or show ideas on your face. To have an authentic experience, people will have to guess your needs and wants. Maybe their guesses will be wrong.
• You cannot correct them. You must live with the results of their guesses.
• To experience this kind of frustration and loneliness is important. You must eat with people and be physically together with people, but you cannot join in their conversation at all.
• You are near others, and may lean on them or hug them, but you are not part of the social interaction.
• Some of you may be ready to quit right here, but for those ready to forge on, let’s make it a bit harder.
• You can start this any time by prearrangement.
• Ask your friends or relatives to discuss you, your behavior and difficulties, in front of you, as if you don’t understand. They can say whatever they want, whether true or outlandishly wrong, and you can’t correct them. You must stay silent. No gestures or facial responses are permitted to show your feelings.
• You should take note of how you feel.
• Every time you feel upset, maybe, for example, after hearing people discuss your behavior, or you feel excited, or perhaps bored, you must flap your hands, stomp your feet or jump up and down. These responses should begin after approximately five or more hours of just experiencing living in silence.
• Tell your friends or relatives to respond each time you flap, stomp, or jump with any of the following types of phrases:
Hands quiet, or
• After a minimum of 6 hours, your friends or relatives should begin, at a prearranged time, to talk to you in ABA English. That is, no more normal speech aimed directly to you.
• They may speak normally near you when talking to each other in lively and interesting conversations, and you may listen but not participate in any way in those conversations. They may speak about you in normal speech.
• But if someone speaks directly to you it must now be in simplified speech and command oriented:
To read the other four steps of the challenge, you can go to my blog, idoinaustismland.com, and search in the search bar for the Autism Experience Challenge.
Meg: I will definitely link to your challenge in the show notes for the podcast as well. I know that I was feeling incredibly anxious just imagining Step 1; that was really powerful. A lot of us have had phenomenology classes in graduate school that were supposed to help us do perspective taking, and I can say that none of them, as far as I know, were actually designed by the people whose perspectives we were supposed to be taking.
So hearing you describe that sounds so much more profound than anything I have ever done as a perspective-taking exercise, and I'm grateful to you for creating that. I will definitely link to it and share it, and maybe even try it. So thank you so much for your time today, and for this interview, and for sharing your insight. It has been such a pleasure speaking with you.
Ido: Thank you, Meg. It has been my pleasure talking with you today.
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