Interview between Speaker 1 (Meg) and Speaker 2 (Elsbeth Dodman)
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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 our professional practices. 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 25 With Elsbeth Dodman. Elsbeth is an autistic artist, creative writer, and public speaker. In this episode we talk about empathy, autistic shut downs, the rigidity of neurotypical people, and what it looks like to build a life on your strengths. My favorite part of this episode is when Elsbeth takes some of the stereotypes about autistic people — things like lacking empathy or being rigid — and turns the mirror right back around on neurotypicals. I loved talking to Elsbeth. Because she’s an artist and a creative writer, she sometimes just speaks in poetry. I’m really excited to share her insights with you. Here’s the interview.
Hi Elsbeth! Welcome to the podcast.
Elsbeth: Hi, thank you for having me.
Meg: I am so glad to have you here. So, I want to dive right in to a little bit of your own journey. You started elementary school in 1994. What was your experience like as a neurodivergent child in a typical classroom?
Elsbeth: It was pretty interesting at times because I wasn’t diagnosed. It was generally accepted that I would be able to keep up with my peers, and very quickly it was noticed that that was not the case. My first grade teacher sat down my parents and said, “There is something wrong with your child. We don’t know what it is but that’s not okay,” and my parents at the time — I’m the first child in my family, so they just kind of figured that was the way kids were, you know. I’ll suppose weird but that’s kids, right?
Elsbeth: So, in some ways it was very difficult because I had the expectations of a neurotypical child, but being neurodivergent, not always able to keep up with them or do them at the same — in the same fashion. So, in some regards, I was ahead of my peers, and in some regards, I was way behind them. And as the grades — as I worked my way up the grades, that gap only widened until it was very noticeable that this wasn’t something I was just going to grow out of as a lot of therapists assured, a lot of teachers assured; that this was actually getting more and more pronounced.
Meg: Were there kids in your school who were in a separate sort of special education classroom as well?
Elsbeth: Not until the year 2000. So, where I’m living, we did not have mandatory integrated schools, up until — I want to say the year 2000, I’d have to look up the actual date — but our school only got an in-school classroom in the year 2000 to 2001 that school year. And it was very much a segregated classroom of kids in what was termed then ‘Special Ed’. I don’t know if it’s called anything different nowadays, if they’ve renamed that or tried to rebrand it. We did have other children like myself who were disabled but were still tossed into what I lovingly call ‘Gen pop’. So, it wasn’t that we had no disabled children. We did have a few kids, but all of us really stood out.
And when we did get a classroom, it was segregated. Again, I don’t know how much that’s changed. I haven’t been in an elementary school for like 20 years, so I’m hoping there’s been some positive changes. But for a while there, it wasn’t mandatory for that to happen. It was optional for schools to have a special education class or classes for students with disabilities. In some ways, it was interesting to see other disabled children because I tend to be very rule-oriented. So, while I knew that my needs were different than my same age peers and I could tell that I was struggling, there were other kids who were just freer to meet their own needs and find their own ways to meet their needs. There’d be kids who’d just get up and leave a classroom, or leave a therapy session, and just walk out because they couldn’t sit still anymore, they needed to go for a walk, they needed that vestibular, that motion, that stimulation to be able to leave and then come back. And they, when they hit their limit, they just got up and left.
And for myself, I found that really freeing, because they were able to take what they needed. I felt that I couldn’t do that because I knew the rules were to sit, and listen, and be quiet, and not disruptive. So, while I knew that I was starting to burn out, and was starting to really lose focus, and really get quite antsy, and agitated, I didn’t feel the freedom of being able to just get up and leave. Which I think, in a lot of ways, was detrimental for me. It was convenient for the teaching staff and the other students around me because I wasn’t — I was doing something that was accepted, I was staying in my seat, but it wasn’t necessarily the best move for me as an individual.
Meg: So, in some ways you looked like you were being successful at school because you were generally following the rules and not getting in trouble, but you were really suffering for it, and not being able to advocate for yourself and meet your needs because there just wasn’t space for that.
Elsbeth: Yeah, absolutely. And while I wasn’t getting up and leaving, I still did manage to get into trouble for developing other quieter means to keep myself occupied at my desk. I started drawing, and it was generally accepted at that time that if you weren’t looking at the teacher, that meant you weren’t listening. And so, I would draw at my desk, and the teaching staff were not thrilled with this option, even though for me it wasn’t that I wasn’t listening, it’s just I was trying to keep myself occupied while I used my ears to listen to the lesson and keep track of what was going on. Drawing, though, was very much a band aid solution. It would help me stay in the seat for longer, it wasn’t sort of an instant ‘you can stay forever’, but it was much more productive, and also minimally disruptive to other people.
I still remember one of my teachers coming around the desk and saying, “I don’t want to see that ever again,” and it was a drawing that I’ve been working on for a few days at my desk. And I dutifully got up and put the drawing in my cubby, but I didn’t quite understand the instruction, because as soon as a new class handout got passed down the line, I flipped the page over to its blank side and started a new drawing. Then only looking back and realizing how much of a jerk I must have looked like. I put that away, she’d never saw that again, but I just started a new drawing. Only like 12 years later did I sort of clue in that she meant, “I don’t want to see you growing again.” I follow the letter of the law, if not the spear.
Meg: I guess you did! You know, I heard you say that back in that time teachers were really focused on you had to be looking to be listening, and maybe that shifted in some places, but unfortunately, in my experience in schools in the United States, there’s almost a resurgence of how can we teach autistic kids how to show that they are listening with their whole body. There’s, you know, the whole body listening that a lot of people are using that says, “Your hands have to be still, your eyes have to be looking,” things that are so out of touch with what an autistic person looks like when they are well regulated and listening.
Elsbeth: Yeah, I think, when we see that mentality of trying to get an autistic person to behave to the standard of a neurotypical person, we get bad results. And frankly, we get dangerous results, because that individual is going to need a different standard to help regulate themselves, or to do their best. And just as we want to give every child the tools to do their best in every setting, and for every child those tools will look different, in the same way, neurodivergent children will need different tools to help them achieve their best standard.
To suggest full body listening, I always find that kind of funny because neurotypical people barely kind of recognize the world. [They] are so — you can look at this, but only for a set amount of time. You can only acknowledge these sorts of things in your surroundings. There are so many times where I’ve noticed things in my surroundings and reacted to them, and neurotypicals around me barely notice them at all. So, my full body listening is reacting to different things in my environment, whether that’s rubbing a toy against my face to feel all of the ridges and textures; whether that’s being able to hear the kids in the playground three blocks from my house playing at recess loudly from inside my house; whether that’s seeing with the bottom of my feet as I walk down the hallway, and judging the texture of the wood versus once I’ve hit carpet. I know where I am in the house. I see with my feet, I hear with more than just my ears, I see with my skin, I, you know, it’s more than that. And so, for neurotypicals to say, “Well, I need you to be full body listening,” but ma’am, I’ve been doing, you know?
Meg: I love that reframe of full body listening so much. And so much of what you’re saying highlights the ways that neurotypicals are so rigid in our expectations of there is one way to show you’re listening, there is only one way to be a learner in school. And, you know, we have historically talked so much about rigidity in autism without acknowledging the ways that actually, it’s this rigid set of expectation that works for — maybe works for a narrow subset of people. I don’t think anybody thrives with those types of expectations, but that’s really what’s rigid.
Elsbeth: There’s so many parts of the autism diagnosis that if we turn about on to neurotypicals, there’s a lot of them. There’s this black and white thinking. So, again, you know, that everybody needs the same ‘this is how you have to learn’ black and white thinking. Very literal thinking — well, if you’re not looking at me, you’re not listening. Full body listening. Empathy, whether we have empathy or not — but are we showing empathy to this child by stopping them from utilizing what they need to succeed in the classroom? Where is our empathy for people?
And so, on the one hand, if we turn that autism diagnosis, it is a reflection of neurotypicals in ways that neurotypicals don’t necessarily want to see themselves reflected. And sometimes that scares me, how close we are together. As much as what separates us, there’s a lot of things that if I just turned that and rephrased it, you would see a very different picture of how neurotypicals are.
Meg: I have to revisit what you just said. So, a lot of people who aren’t guided by actual autistic voices and experiences have posited that autistic people lack empathy based on autistic people showing empathy in different ways than non-autistic people expect. And a lot of autistic people describe having an almost paralyzingly heightened sense of empathy — and you’re nodding emphatically as I say that — and so, you’re saying if neurotypicals are supposedly so much more empathetic, then how is it that we are so unempathetic to the needs of autistic people that we would take away the ways they need to fundamentally move their bodies and exist in the world.
Elsbeth: Absolutely. And not even just in that respective, but in a lot of things. And it doesn’t necessarily just apply to autistic people. If we look at the way human beings treat others who are different from them, disability or whatever else, where is this empathy that I’ve been taught so much about? It was advertised to me that neurotypicals were this epitome of empathy; that they had the one true way of empathy, and that I — I remember being told that autistic people viewed other humans as furniture. But wait a minute, and then as I got older, and saw how society refused to bend even to simple things that disabled people were asking for, whether it was, “Hey, we need some more housing,”, “Hey, we need to look at education differently so that we can succeed,” and everybody wins in those scenarios, “Hey, we need to look at employment and how we can remove employment barriers for disabled persons,” and everyone was like, “Nope,” you know. Where’s the empathy?
Meg: It is a very narrow definition. A very rigid and a very narrow definition. I’m going to jump forward a little bit in your own life. You and I have talked before about how the transition out of high school was a very impactful time for you, and a period of major shutdowns. I want to talk about shutdowns, and it ties in really nicely to this idea of empathy, because you were talking about how in school you weren’t necessarily a major producer of behaviors that distracted everybody’s attention, but you also weren’t doing well. And shutdowns, as opposed to meltdowns, can kind of fall into this category too. The kids who need just as much help, but we’re not tending to. Talk to me about shutdowns, and your experience, and how they are different from meltdowns.
Elsbeth: So, a meltdown — and again, as I’m going to explain this, will be different maybe from other autistic people explaining this, so I do urge listeners to talk to many autistic people, and hear many views and ideas on the difference between meltdowns and shut downs, so that our broad understanding is reached. For me, a meltdown is like an explosion. A pushing out of energy. A shutdown is an implosion. So, all of those emotions are shutting inward, rather than being pushed outward. We have different reactions. Shutdowns can be more convenient for people around me because they’re quieter. They tend to be less outward expression and more inward, so you don’t really have to look at it to see what’s going on in the inside. Whereas a meltdown, you’re going to know real fast, and it’s going to be very disruptive for people around you.
For me, a shutdown is sort of a slow descent or, well, a descent into well, shutting down. So, speech is lost. Eye contact is lost. My eye contact is fairly spotty to begin with, but it’s completely gone by the time we’re in a proper shutdown. Speech becomes very difficult. My posture tends to curl inward, so I’m sort of crawled up and protecting myself. I tend to get pretty still and very quiet. It becomes very difficult for me to process how I’m feeling, and then get those feelings out into a presentable way of, “This is how I feel,” or, “This is what I think next steps should be.” Usually for me, a shutdown comes about when I’m in a social situation that I don’t want to be in, or we’re discussing a topic that I don’t really want to talk about, and I can’t leave.
So, as I was leaving high school, I don’t like change in routine. So, I was really upset that I was leaving the school. And at the high school that I was at, I was very well-supported, and I did actually, for the first time, have friends. I had friends my own age. And so, I really didn’t want to leave because this, you know, this combination of being well-supported and being just really comfortable in my routine came to a head. You’re going to have to go to a different school, with different people, with different teachers, with different expectations. The workload is going to be harder, and you may even have to go out of town, which ultimately I did. And so, it was all of this sort of insurmountable change that was looming, and there was nothing I could do to stop it. That was coming for me regardless of what I was going to do. Even if I didn’t go away to school, eventually the high school was going to be like, “What are you doing here? Get out, you can’t go here anymore.” And that was extremely upsetting.
And so, when the topic of, “Where would you like to go to school, what would you like to study when you leave high school, what kind of job—”, you know, would come up, that shutdown would begin. And it was difficult because while it was a topic that I didn’t like to talk about, it was coming, whether we talked about it or not. So, really, I couldn’t leave. There was no escape. And so, I would start to shut down, lose eye contact, lose speech, hurling inward, and kind of regressing, if you will, into myself. And would eventually loosen up, and loosen up in body posture, loosen up in eye contact, loosen up, my speech would come back, and I’d be very apologetic afterwards because I’d be very hard on myself. “Why can’t I do this? I need to be successful, I need to, you know, I’m not an infant, I can do these things. Why can’t I do these things? All these people are helping me, and I hate that I’m not being helpful to them, or that I’m angry at them because they’re participating in this thing that I hate, but they’re doing it for me to help me, because I can’t do it on my own, because I’m useless—”, so it just cycles around, and around, and around.
Meg: In these times, what types of things were helpful to you?
Elsbeth: Breaking things down into smaller pieces. Rather than doing like a very big thing, let’s focus on just a little thing. And so, that might take you a bit longer, but it means that you may not shut down completely. I might get to a point where I’m, you know, starting to get really upset and starting down that road, but not getting all the way there before it’s time to stop. So, yeah, that might make a short process longer, but ultimately it means I can stay with those pieces and feel more successful managing them.
Not demanding speech during those times, or being patient, and waiting for me to work out the words. Having a good support team around me, like, whether it’s good guidance counselors, whether it’s a good parent, whether it’s good caregiver, whether it’s whoever’s on your team being really supportive, and patient, and understanding that that’s what’s happening. And, you know, trusting those people to help you through that. And sometimes, while having you there, knowing that you are going to shut down and saying okay, “I’m going to do this, and I am going to show it to you, and you can approve or disapprove these choices before I press ‘Send’ or before I confirm this,” but, like, my mom picked all of my university courses because I’d get really flustered and upset and, you know, really agitated, like just navigating the university portal for course selection, that she just picked them and, you know, okay’d them by me, and I’d show up at the class. So, to have people like that around you makes a big difference.
Meg: So, you said breaking things down into smaller tasks rather than having things be just one overwhelming thing that you had to do; not demanding speech, and being patient, and giving more time for your responses, and for you to be ready to respond; and then taking some of the demands off of you, without taking away your agency. So, you still had the final say, the oversight, but you didn’t have to do some of the logistical things that were more stressful for you during that time.
Elsbeth: Yeah, absolutely. And those were things that worked for me. Again, other autistic people will have other things that they do or work best for them. So, it’s always important that you check in with your person that you’re supporting or helping, and ask them what they would like to do or have done, and what helps them, because it will be different for each person. And that’s okay. Yeah, these are things that, for me, I found really helpful.
Meg: Yeah, that’s a great reminder. I want to jump forward again in your life, Elsbeth, to the present day in your very successful writing and art career. So, one of the things we’ve talked about over and over again on the podcast is strengths-based approaches, and how people build their lives on their strengths, not by remediating their deficits. How has this played out in your life?
Elsbeth: Well, despite my teaching staff being really upset that I was drawing in class, I went on to get a fine arts degree, so I guess that worked out.
Meg: You were allowed to draw in class in your fine arts program, right.
Elsbeth: Yes, in the art history portion, they really wanted us taking notes about, like, the masters of art, but yes, ultimately, yes. My course also included studio time, so I was very much encouraged to draw during studio time. I like to make art, and that’s really helped out now during the shutdown, because I have something that I can be productive with, I have something that I can build or work towards that doesn’t require me leaving the house. So, that’s really come in handy during the shutdown. I have a hobby that I can occupy myself with and be productive with, so I’m saving up some of my better drawings and I’ll make like a book, or a small magazine of art works that I’ve done through the COVID seasons. But yeah, that’s worked out very well. And it’s been an excellent way to work through self-expression and try to work out what I’ve wanted to say on topics, or how I’ve wanted to approach things, either about myself or about the world that I live in.
Meg: And what about your public speaking and your writing? You’re a wonderful writer and obviously a wonderful public speaker, trace that thread back for me into your early years as well.
Elsbeth: So, I tend to talk to myself a lot. It’s more of an auditory tic. When I was little, I spoke a lot, and I still do now, kind of almost incessantly. And so, when I was younger, that’s one of the reasons why in 1994 they ruled me out for autism. I was female and too chatty. They really wanted Rain Man and I looked nothing like Dustin Hoffman, so they skipped me over until I was older and they said, “Yeah, yeah that’s autism, jeez,” but in the meantime, I kept talking, and repeating, and cycling language over and over again. And by doing that, it sort of — I was able to build sort of a flow to things, how I liked how something sounded. I could practice saying the same thing sort of over and over again, and adjusting how it went, where I’d put the emphasis, playing with words, playing with sounds. And that worked well in writing as well, as I was able to get that out in a different way.
So, it meant that when I sat down to give a presentation or set up to give a talk, I’ve had this conversation a hundred times. It flows very smoothly. My ideas get out very well, because I’ve had a lot of time to practice. I’ve had a lot of time to go over this conversation with you. We have had this conversation many times before. And so, what was it for the 101th time that I’m saying it now. And as far as writing — writing was also really fun. It was another way to play with language and to play around with words. There’s a different flow to it because it’s written on a page, rather than spoken out loud, though I’ve been told that my writing sort of takes on the quality of somebody talking. It reads like someone’s talking to you rather than necessarily like a literary piece; sound that comes off as more of a conversation.
Meg: Yeah, one of the things that I have been told again and again since I’ve started interviewing autistic people is that we, non-autistic observers, don’t usually know what we’re looking at. When we see somebody watching credits over and over, or reciting a phrase over and over, or moving race cars in a very systematic way on a racetrack, we have no idea what that person is learning, what they’re working out. And you highlight that so nicely in how these things that I think a lot of people would try to stop — your teacher said, “Don’t draw,” people would say, “Don’t repeat phrases,” — they would use behavioral approaches to try and make you stop, but you were actually working on something and you were working on something that’s meaningful and that you’re good at, not just from a neurotypical perspective but as you describe it, that it lets you express yourself in your own life. So, I think that’s a good message that we have to be so careful to recognize that we have no idea what we’re seeing sometimes.
Elsbeth: Absolutely, and sometimes it was just the matter of chasing a perfect moment. Sometimes, watching that chandelier in our dining room spin, and the light catching off of the panels on it, was just about chasing that perfect moment of when the light caught just right at that angle, and wanting to see it over, and over, and over again, to the point that you spend hours just for that one second of perfection. To get back to that moment. To get back to that visual. Listening to the same song over and over again for that perfect bar, and being sort of suspended in that moment, and then having to ride the ride again and say, “Okay, I want to go back to that,”; like being on a roller coaster, you just, you go off, you know, just for that drop, and you’ll do it again and again. So, there is a beauty to it. There is something in it, and I don’t believe that it should be discouraged. If someone’s doing something particularly harmful to themselves or others, that’s, you know, that’s a different story, and we need to address that. But I remember saying to a group of young professionals starting out, “You’re not the Fun Police. You’re not the Fun Police, if somebody is having a good time, let that go.”
Meg: I love it. It’s like, that’s not what fun is supposed to look like, stop that!
Elsbeth: Yeah, you can’t be doing that! Blah blah blah. You’ve got bigger hills to die on, you’re not the Fun Police.
Meg: Elsbeth, I want to ask you. One of the questions I get a lot is from therapists who have learned or are learning to use a more pro-neurodiversity approach, and they’re working with parents who — or with teachers, but I want to ask about parents, because this is a tough one — who have learned a deficits-based approach. I mean, parents have been taught the medical model and taught a deficits-based approach from everyone who’s entered their lives since their child was diagnosed as autistic. So, I’ve asked this to a few people on the podcast and I’m gonna keep asking it. What advice do you have to these therapists who say, “Oh, I want to build on your child’s strengths and not use these more compliance-based strategies,” but the parents are in a really different place?
Elsbeth: Ultimately, you as a therapist are asked to remember who your client is. So, who is your client? Is your client me, Elsbeth, an autistic person. Or is your client my mom? And this can be a bit tricky because, yes, parents do form part of the team of supports around that child. Parents and caregivers are large numbers of that team, and are often your first, you know, your first members on that team. And I don’t mean to discredit that, or make that sound like it’s not what it is, but who is your client? And if somebody was asking you to do something that was detrimental, or you knew was not in your client’s best interest, you would say, “I’m sorry, that’s not in my client’s best interest, so I can’t go forward with that.”
If you’re interested in helping Elsbeth live her best life, what does that look like? What’s really — and who is that for? Because if you’re asking me to stop waving my hands because it’s unsightly, because my parents are embarrassed, because the neighbors might talk. There are weird people all over the world. If you don’t want to see weird, don’t go outside. Turn off your phone, close your laptop, go live in the woods away from people. If you want weird, it’s always been right outside your door. Ask anybody who has ever worked retail in their life, you know weird is just a doorway away from you. If people don’t want to see that, that’s too bad. That’s not in your client’s best interest. So, if we’re taking away the way that I see things by rubbing something against my face, and it’s not harmful — I need to stress that one — is not an imminent threat to myself or other people. Who’s that for? And if the answer is, “That’s for my mom,” then that’s not in your client’s best interest. If the answer is, “My neighbors or my community at large,” that’s not in my best interest. And if we’re helping Elsbeth, if we’re doing stuff that’s harmful for Elsbeth, but makes society more comfortable, what’s the real message here? And how is that, how’s that helping? Who are we helping?
Meg: That’s a great perspective. Yeah. And, you know, I like how you say it makes people more comfortable. It’s not actually better for anybody to reject difference. It is more comfortable, like you said, but for the people, the kids in the class who feel uncomfortable when they see somebody stimming, or the patrons in the coffee shop who aren’t used to hearing echolalia, or whoever it is that feels uncomfortable from difference, will have a richer and fuller life by working through that themselves, by doing their own work, because we know that difference is beneficial to everybody in so many ways. Comfort isn’t really the key.
Elsbeth: Yeah. And I wasn’t born to be a convenience to other people, or to worry about their comfortability. And again, I do stress that if what you’re what you’re doing is harmful to yourself or others, that’s a different story. But if we’re talking about stimming by waving your hands or flicking your fingers in front of your eyes, if we’re talking about chewing on chewable jewelry, or echolalia, everyone’s weird. Everyone’s weird. You’re weird. I’m weird. My neighbors are weird. The people that come to our store are weird. Everyone’s weird. Everyone does weird things.
People buy scented candles because they like the smell. You have lucky socks that you wear on when your team plays in the playoffs, and you don’t change them until the playoffs are over. And that’s weird. Everyone has their favorite coffee shop, or like, you know, everyone’s weird. It’s just, mine gets pathologized and mine is more noticeable and can really shake things up. But when we shake things up, when we rock the boat, when we sort of disrupt, and ask people, and challenge people to look at life, and to see things and be seen, that ultimately is something that helps people; that brings people to a point where they do challenge themselves, and they challenge the status quo. When we are challenged, we come up with new solutions. How can we support people, how could we make things better for everybody, how can we create more welcoming spaces, once, you know, when we challenge ourselves to learn?
If we live in complacency, nothing ever changes. Society always moves and grows, and when it stops moving and growing, that’s because it’s dead.
Meg: Yeah. Elsbeth, what are some of the things in your life that have helped you cultivate a positive sense of self-identity?
Elsbeth: Some of it is spite, I’m not gonna lie. It is out of pure spite.
Meg: You’re like, watch me thrive. Just watch.
Elsbeth: Oh yeah, oh yeah. No, I’m gonna be here, and you’re gonna like it. I’m here, and that is a threat. God has let me live another day, and I’m about to make it everybody’s problem. [Laughs] A part of it is a lot of stubbornness. There will be times where I would be bullied or, you know, you’d meet people that say, “Well, I don’t want you to sit near us. I don’t want you to be over here.” Well, I have rights, just like you. So, you can do what you like, but I’m, this is my spot and I’m not bothering anybody. In fact, you’re doing the wrong thing by being unkind, just because you don’t like me in this space. So, no, this is my desk. This is where I’m working. Mind your business.
Why do I not deserve decency or good things as well? Why, no. At some point in my elementary school years, I agreed to live, even if it was lonely, even if I didn’t feel wanted, even if I didn’t feel that love from peers or adults in my space, even if it was for nothing else than my own utter selfishness. I was going to live. And, you know, I had rights, and I deserved to be seen as a person, and to be acknowledged as a human being. It was sort of that raw stubbornness of, I don’t like the way that I’m being treated and I believe that I deserve, you know, a basic level of decency. And it was that that sort of made hearing that I had no empathy very difficult to swallow. If I had no empathy, what were the people who, you know — what were my peers? My same age peers. If I was such a monster, what were they?
And realizing that at some point, living as somebody who is different, or living as somebody who becomes outcast or on the fringe of society, you see a side of society that is very honest, in some ways that is more honest with you than it is with itself. Because it says to itself, “We’re accepting, we love everybody, we’re not racist, we don’t see color, we’re not prejudiced, we love disabled people,” but the people who live on the fringes of that society see that, and they’re like, “Actually, I have some bad news… You are all those things,” and these are the problems that are here, and society is more honest with you about what it really is. In that way we get to see a very raw and unedited version of society than what society likes to pat itself on the back and say that it is. And so, there there was this stubbornness to say, “No, I am a person,” in utter defiance, as a radical protest. I love someone with autism, and it’s me. I love someone with autism, and it’s me, by the way, and I don’t get any Facebook likes for that. I don’t get — no, I care about myself, because that’s radical in a world that says you are less worthy.
Meg: It is.
Elsbeth: And to be able to stand up and say, I am worth more. I am Elsbeth, and I have always been good enough. I have always been worthy of fair treatment, of a fair education, of decent self, like a, you know, basic common respect that we have for other people. I deserve access to appropriate care. I deserve to be believed when I tell people about what my needs are, or when I seek help, or when I seek justice if I’ve been harmed. I deserve to be taken seriously, and to be presumed to be intelligent enough to be a part of the conversation at the table about autism, and what changes are made, and what policy is put into place, and what best practice is. I should be at that table. I mean, not necessarily me, Elsbeth, but, you know, the people who are part of that group deserve to be at that table, having that discussion, because it’s their life. Ultimately, it’s us.
And if we want the world to see us as competent, as worthy, as worthwhile, but we’re not willing to do that work by having autistic people at the table, or disabled people in general at the table, or other marginalized groups at the table in good faith and good representation, then how do we expect the larger world to change?
Meg: Absolutely. Thank you for that, and for weaving us through your journey and your lessons. It’s very instructive, and there’s really a lot to learn from your journey about empathy, and about inclusivity, and about what building a life on your strengths, and building a strong sense of self really looks like. Of everything that we’ve talked about today, if there was one thing you wanted therapists listening to start doing or to do differently in our work with autistic people, what would that one takeaway be?
Elsbeth: I suppose it’s, as I said, respecting who your client is. Asking yourself that before each session, and upholding your client in a way that if you’re able to ask them what they would like to learn, keep them involved as a full person receiving supports, giving a person choice, or giving a person agency within their own care is huge. My favorite therapy session was when a therapist asked me what I wanted to learn. And I said that I wanted to learn how to jump rope, because I, at that time, I’d seen other girls in the in the schoolyard jumping rope, and I just never figured out how to swing the rope over my head, and down to my feet, and jump at the right time, and swing the rope back, and manage to do that successfully, like a lot of times in a row. I can maybe do once, maybe.
And so, yeah, she said, “Yeah, let’s work on that!” And she tied one of the ends of the skipping rope to a fence post because it was just she and I, and she swung the rope, and I tried to figure out how to sort myself into timing it so I jumped right. And eventually, I worked it so that I started to move the way I needed to move, rather than two feet hopping up and down, it was more of a rocking back and forth step-step-step-step, and that worked for me. It was different but it worked, and I built a skill that meant that I could interact with peers, that meant that I was getting exercise, that was building on vestibular and motor function. So, this was all really great but it was because a therapist took the time to consider me as a person, and what I wanted to learn, and what was important in my life at that time, as a seven-year-old girl, rather than, you know, “Here’s what you need to have accomplished by age seven,” you know, seeing me as an active participant in my supports and asking for voice, as opposed to other times where I was in therapies.
I was in a therapy where a group of girls and I, who were all neurodivergent in some way or another, were taught how to deal with bullying by not responding or not giving a reaction. And so, the male therapist sat us all around a table and he verbally berated every one of those girls. He went child by child, and he mocked them, and he verbally abused them. And the goal was to respond correctly, which was not to respond at all, not to physically respond or emotionally respond to being abused. And so, an adult man got to sit around a table and call little girls names. And I responded very badly. I failed that class.
Meg: Good for you.
Elsbeth: Yeah, because I got up and ran. And to me, that was a breach of trust. I trusted him, because he knew that we were being bullied. He knew that we were facing that struggle, and instead of sort of saying to us, “What you’re going through is not right,” and, “Let’s solve the real problem which is bullying,” he tried to teach us how to react to being abused by abusing us. And so, I ran out of the room, and hid, and eventually when I was found, the punishment was that I didn’t get any snack. So, the other girls in the class got to be fed. It was a cookie, it wasn’t like a full meal or anything, but it was this, it was a symbolism of the thing, that the girls who allowed themselves to be hurt, that responded correctly, that complied, that sat there in compliance, and allowed a man to do that to them were rewarded. And a person who reacted poorly for a myriad of reasons, or reacted in an inappropriate fashion is punished and denied access to food.
And that to me, as I got older, you know, this cycle of abuse where young girls are taught to accept harm from people in authority, and that people in authority can then treat you, and, you know, there there, it was all just a session so, here’s a cookie and it’s all better now. — and that’s not the case. And how much more of those young girls may be susceptible to abuse in the future, because that’s what they were taught. But also, the notion that the person who is looking out for us for this agency, or who was looking out for my — you know, asking me how I felt, or what I wanted, or was looking out for my welfare, was me, an 11 year old girl, was also inappropriate when there were adults in the room who should have taken into consideration what’s in the best interest of our client.
If our clients feeling not safe or reacts poorly, how are we going to manage that? Is this really necessary? What are the rights and dignity of the people in this room? And so on, in these two examples, which are very different, one therapist acknowledged dignity, agency, and self-actualization. And another therapist denied all of those and deemed the lesson more important than the person learning it, but also that the ends justify the means. And that excused putting five girls in direct harm. And so, the reason I would use this story for therapists, whether they’re just starting out, or whether they’ve been in the game for a long time, acknowledging your clients as full people, and I know that that sounds really radical because you’re probably saying to yourself, “Well, of course they’re full people,” but when we are practicing, when we are in session, what does that look like?
Your clients have agency, your clients have dignity, your clients have rights. What is in their best interest, and do they have a say in what that is? How are we looking at the rights of a child? How are we looking at the rights of our clients to say, “Do they understand what we’re teaching them, and why? Do they understand why we’re doing this, or what we’re trying to achieve with this? Do they have a say in it, or is it just something that they need to do because I said so.” And using excuses like, “Because I said so,” isn’t going to fly. If it’s their health, if it’s their body, if it’s for their betterment, they need to know what it is. And they need to be able to understand it. So, you may have to change the wording to fit where that person is in their understanding.
Obviously, if you’re talking to a 14-year-old versus talking to a 6-year-old, you know, adjust your explanation to fit, but make sure that your client has a say, has understanding, and has agency, and is able to say no without punishment, or is able to leave a situation or say, “I can’t do this anymore,” without having food withheld, or without having their dignity withheld.
Meg: Yeah. These examples are really poignant, and it’s very easy, I think, for most of us to distance ourselves from them. To say, “Oh, well, I would never do that.” But it’s insidious, this, “Mask your autism, act like I’m trying to get you to act, and you shall be rewarded.” We do this in other ways that don’t look quite so obvious, but therapists are — we’ve talked about this a few times on the podcast — moving children’s bodies for them without their permission, which ties in so directly to what you’re talking about with little girls learning that they don’t get to make choices about their body, that adults can override their choices, that that’s normal and expected, with withholding kids interests and saying, “No, you can’t have the things that make you who you are that bring you joy, until you do these things that I need you to do.” There’s a lot of sort of modern-day applications of your example, which feels extreme now, the man reenacting bullying in the room to see if the little girls can learn not to respond, but we do something similar far too often, without being able to recognize it as that.
And I love the flip side of it that you painted for us. To really see our clients and to see them as people who are whole people, who have agency, who have choice, and who have the right to say no. Thank you so much for all of those lessons.
Elsbeth: Yeah, absolutely.
Meg: Elsbeth, tell us what you’re working on now and where we can find you online.
Elsbeth: I am on Facebook just as Elsbeth Dodman. So, if you look me up, I do a bit of writing on there. I have posted a few of my writings and some of my artwork on there. Sometimes I do art videos. I have done videos on autism specifically. Some of them pertain mostly to autism within the context of the province and country I live in. So, if you’re tuning in from outside of Canada, you might be like, I don’t understand this government reference, and that’s fine, but some of them are about autism in a broader sense. Yeah, I mostly just use Facebook as my advocacy outlet. So, if you’ll be up there, feel free to say hey, just let me know who you are so I don’t think it’s spam. You know, Facebook.
Meg: Yes, that’s always good advice. I’ll link to your website and your Facebook in the show notes, and I’ll upload a picture of some of your art. Thank you so much for being on the show today, Elsbeth.
Elsbeth: Thank you for having me and for continuing to invite autistic people to have a voice in autism issues. I think this is something that’s really important, and the more we push that, the more broadly accepted that that’s going to be. And that that voice that autistic people have worked so hard for — because we do work hard for our voices — becomes honored and put to use in the betterment of our lives, in autistic lives. So that I can tell my stories, so that the children coming after me have a better go have it, have an easier go of things than I had. And we hope for that for our kids, that your children can stand on our shoulders, and breathe the air of higher places.
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.