Interview between Speaker 1 (Meg) and Speaker 2 (Stephen Shore)
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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 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 29 with Dr. Stephen Shore. This episode is a replay from the live Learn, Play, Thrive Neurodiversity in the New Year Summit, which took place in January of 2021. Our guest, Dr. Stephen Shore, is an autistic advocate, consultant, writer, professor at Adelphi University, and adjunct professor at NYU. His work focuses on aligning best practice in supporting autistic people to lead fulfilling and productive lives. His most recent book, ‘College for Students with Disabilities’ combines personal stories and research for promoting success in higher education. He’s also the co-author of the book, ‘Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum’. Because this recording is from a live summit, you’ll hear me reference the talk by Zosia Zaks, which took place the day before this interview during the live summit, but you can also find it on the podcast in Episode 21 if you haven’t heard it already. The audio does cut out very briefly in the beginning, but I promise it comes back quickly, and it’s pretty good for the rest of the recording.
So, in this interview, Dr. Shore really lays out a concrete path to helping our clients move through the process from self-awareness to self-advocacy, including so many important steps that many of us often miss. This talk is important no matter what age or what population you work with. Here’s the interview from the Learn, Play, Thrive live summit.
So, Zosia got us started yesterday on thinking much more deeply about self-advocacy. And I know this is an area where you have really specialized in your work, so I want to just dive in with you. Talk me through what are the foundational pieces of self-advocacy?
Dr. Shore: Foundational pieces of self-advocacy begins with the autistic person understanding what it means to them to be autistic. So, what does it mean to be autistic? That begins with discussion and disclosure to the autistic person that indeed they are autistic, these are the characteristics that come with being autistic, and these are the great strengths that come with being on the autism spectrum. And at the same time, we must be realistic about those challenges. So, I have a four-step process that I use to tell somebody they’re on the autism spectrum. And what that does is it sets the foundation for a three-step process for effective self-advocacy.
Meg: We really need like a corresponding four-step process for therapists, right? But because before we do this, we have to rid ourselves of our own misconceptions, and stereotypes, and deficits-based model before we can even consider effectively doing what you’re describing, which is so lovely and so important.
Dr. Shore: Yeah, thank you.
Meg: Yeah. Okay, so tell us more about your process. We’ve been working through that this week, like, what did we think we do about autism, how are we actually pretty deficits-based and pretty shallow, and how can we move towards this strengths-based identity-affirming perspective. So, once we have really done that work and are in a position to start talking about autism with our clients in a strengths-based way, and build the foundation for self-advocacy, tell us, what else? What does that look like?
Dr. Shore: Well, what it looks like is, now let’s take a typical example. Someone who may or may not be autistic. You’re driving past, and you didn’t bring your GPS, you didn’t bring your phone. But you’re gonna have to go old-fashioned and actually asked somebody, “How do I get from one place to another?” So, you go, you park in the convenience store parking lot, you go in, and you ask somebody, “How do I get to where I need to go?” And they tell you, “Okay, you go here, there, down a couple of lights, you take a left, past the old church, then you take a right,” and so on, and soon you realize that you’re getting way too much information to remember. So, once you recognize that, you’re going to advocate for yourself.
One is, you become aware of the challenge. And then two, you’re going to advocate for yourself, and you’re going to probably ask for a bit of time, “Can you wait a moment while I get something to take this down?” And you’ve communicated in a way that’s clear, it’s understandable, the other person can provide support, you didn’t have a meltdown, you didn’t bite them, kick them or scream, hopefully, out of frustration from being lost. And so, once you’ve advocated for yourself, you then go to the next step, the third step, which is disclosure. And what that means is that you have to give a reason why; why you’re asking for more time, some time to get something to take this down. And for this situation, the disclosure is very simple, “I am not going to remember it all. Thank you very much.”
Now, if we take this into a more autistic situation, let us suppose that I’m being shown the workplace, my new office, by my supervisor. And my supervisor is excitedly showing me the new office. There’s a number of people working in the office, but fortunately, it’s a quiet office. So, the ‘open office’ concept is okay in this case. However, I noticed that the place is lit with recessed lighting fixtures. Part of the foundational knowledge that I know about myself is that recessed lighting fixtures that shine downwards — and sometimes you can even see the light bulb — and I just don’t get along. So, that’s an example of what it means to me to be autistic. Once I recognize this, this is seeking challenges in the environment, scanning the environment, that’s the first step. So, what do I do about it?
Well, part of my brand is wearing a hat. And many of you may think that it’s a fashion statement. And in many ways, it is, and it’s always good to support your university, Adelphi University, whenever possible. But in fact, it’s really an accommodation. Because I know that for me, being under recessed lighting fixtures is probably like looking into a spotlight for most people. So, it’s really an accommodation. And I realize that, I know that, and I know it’s something that can be used.
So now comes the second step, which is the advocacy itself. And I turn to my supervisor and say, “You know, gee, I noticed that nobody’s wearing a hat in the office. However, I wonder if it’s okay if I wear a hat.” There it is. One sentence. It’s easy. The supervisor can understand, they can support this. It’s easy to support. They don’t have to provide anything. I’ve got my own hat.
And then the third step is the disclosure. I must have sensitive eyes. These lights hurt my eyes; they give me a headache. And what I did is I engaged in what is known as a partial disclosure. I didn’t talk about autism. There’s no reason to, it’s too much information, it may be distracting. So, I just go for the partial disclosure, the specific aspect of autism that is affecting the situation at this time. And if I’m really on my game, I might even say, “Wearing this hat will allow me to be more productive for your office,” so they get something out of it too.
Meg: I love that. So, the foundational piece, if I’m the person who needs to advocate for myself, is having a self-awareness of my strengths and my challenges, or the possible ways that certain contexts or environments will be a mismatch for my needs. And then once I have that foundational knowledge, in a situation, I’m going to scan the environment for challenges. I’m going to advocate by making my needs known in a clear way. And then I’m going to give the why, which you said could be disclosure or partial disclosure, is that right?
Dr. Shore: Yeah, that’s exactly it. And when you’re scanning the environment, my example was an environmental situation. And that’s probably the most common. But there also can be challenges in the cognitive realm, as in how we think. So, the person who’s giving us a boatload of verbal information, and perhaps we don’t take information in that way well, because we may have a certain amount of central auditory processing disorder, for example, and we do much better if we have something to write it down, something to refer to. So, in that case, the advocacy turns towards, “Could you say that again so I can take it down?”, “May I borrow the manual?” or, “Could you send it to me in an email?” for example. And so, that’s another example of advocacy.
Meg: I’m excited to tie this back into what Zosia talked about yesterday with attitudinal accommodations of people who said, “Wow, that person doesn’t greet me, he’s rude,” or, “He doesn’t have lunch with us and the other co-workers, he doesn’t care about us.” And asking for those attitudinal accommodations as well, saying, “I need a break from being around people at lunchtime, because I get really tired when I’m interacting with people all day.”
Dr. Shore: Oh, exactly. And that’s the third category, which I call the socio-emotional realm. And that has to do with how we interact with others. And that’s a great example that you gave from Zosia.
Meg: I love how you’ve broken this down. Because often we see with emerging self-advocacy skills, especially with children and adolescents, we might hear them ask for what they need without the reason. And we know that non-autistic people are pretty bad at imagining the perspective of an autistic person without some help, or having done some work around that. So, when we hear, “Can I see the manual?” or, “Will you write it down for me?” it seems like that’s very likely to get misinterpreted ungenerously by a lot of listeners. And when you’re adding on the why, it has that perspective-taking piece really built in.
Dr. Shore: Yeah, exactly. And that perspective piece is very important, as you mentioned, and the fancy term for that being ‘theory of mind’. There’s a lot of conversations about how autistic people have difficulty understanding the non-autistic mind. But we can also flip it around and ask the question, do people who are not autistic have challenges in understanding the autistic mind?
Meg: Yes, we do.
Dr. Shore: I mean, we both need to learn more about each other.
Meg: We do. And it seems like this process could go both ways. If we have a mixed group and the non-autistic person is saying, “I’m feeling really stressed out because I feel like you don’t like me because you said this thing or did this thing,” and I need to check that, right? If they’re advocating and saying, “I think differently than you. Can you help me get what I need,” and having the work be done on both sides could be a really lovely process too, not having the non-autistic person tell the autistic person that they need to act differently or accommodate non-autistic norms, right, like that — the world is set up for non-autistic people, but just having it as a framework where non-autistic people can also be challenged to initiate some of the work around figuring out the disconnect.
Dr. Shore: Right, exactly. We both need to work and meet somewhere in the middle.
Meg: Yeah. So, okay, let’s work through a concrete example. Let’s say we have an OT who’s working with a teenager who’s always in trouble. People say, “Oh, he’s lazy. He’s smart, he just doesn’t want to do the work. He’s not doing his schoolwork, not doing his homework. He needs tons of reminders to do his chores.” We know if we look at this through an autism lens, we’re going to come up with very different hypotheses about why this might be happening versus the people in his life who are saying, “Oh, he’s just being lazy.” But what could this process look like from moving from self-awareness through self-advocacy, if you were working with this teenager?
Dr. Shore: All right, well, I’m grabbing one of these comments. People call him lazy. And this is the kid who’s slouched down in their chair, and they’re not paying much attention to the world around them. The person is smart when they apply themselves, but they rarely seem to apply themselves and don’t seem to understand what’s expected. And putting on — I guess about as an ‘OT-hat’ as I can put on, because I’m not an OT, so maybe it’d be called ‘a-friend-of-an-OT-hat’ — and I might wonder if this person is hypo or under sensitive. Hypo-sensitive to the environment, in the proprioceptive sense, perhaps in the vestibular sense too. They don’t quite know where their bodies is, this is what I wonder. And that’s a characteristic of autism that’s not often discussed outside of the world of OT.
And that is, where are we in relation to the environment? Where does our body end? Where does the environment begin? So, for example, most people, and I do this when I give presentations, I ask people that touch the back of their chair. And people just reach around their shoulder and touch the back of the chair, and they’ll think nothing of it. However, for the autistic person, we may not be able to take for granted that we know where the body ends, and where the environment begins. And in more mild cases, this is a person who we’d call being a bull in a china shop. So, then I would go to my friendly OT, and engage in a discussion as to whether this individual may be hyposensitive, do a good assessment for their sensory profile, and then see what can be done, what sensory diet could be provided in order to number one, even out the senses. And then number two, what education can we give to the student so that they can recognize, well, this is how your body is; and these are some clues that may let you know that you’re being hypo or under sensitive in a situation; and these are some things you can do to fix it.
Meg: All right, so we’re helping facilitate that process of self-awareness here, right? So, maybe it’s, you know, his need for more input from his environment, maybe there’s an executive function piece; we’re going through this discovery process with him to figure out what’s going on. And it sounds like that’s sort of the foundational level of, “What are my needs, what are my challenges,” and then step one of what’s happening in this environment that’s not working for me, and move me from there towards self-advocacy, in this example.
Dr. Shore: All right. So, taking it one step further to self-advocacy. That would mean, once the person is educated, that they need to move perhaps more than other people to give themselves body to environmental awareness. And that might be the person who, depending upon where they are, on the developmental stages of self-advocacy, that might be the person who’s perhaps in the earliest stages, where you have a conversation with them, you’re building up the foundation. And now that we’ve talked together, and we brainstorm some possibilities to help you increase your body to environmental awareness, and we’ve come up with the idea that maybe sometimes you need to just get up and walk around. And now that we’ve determined this with your input, we’re going to meet with your teacher, and we’re going to talk about these needs in a way that they can understand.
So, again, depending upon where they are, if they’re at the beginning levels, because we’re not all born immediately knowing how to advocate. But it’s a process and it may require a reconstruction. And it might be, for example, “Meg and I are here to talk to you today about a challenge that she’s having in class. And in my discussions with Meg, we’ve found that…,” and then we explain it. Or, if you’re a little bit further along, “We’re here to talk about a challenge that Meg is facing in class. And Meg, why don’t you — could you tell your teacher what these challenges are?” And if you’re non-speaking and you’re doing this through an assistive communication device, or you’re showing pictures, or talking about it the way you know; with the latest stages, it might be a situation where, “Meg, you go and do the advocacy all by yourself.” And then you come to me and you say, “This was the problem, this is what I did, and this is how it went. And I think it worked,” or, “Maybe it didn’t work.”
Meg: That’s great. That really parallels the parent coaching process that a lot of us are more familiar with, where we’re demonstrating something, and then we’re coaching our parents through using a new skill, and then we’re supporting them, and reflecting with them when they try it. And I love this idea of taking this process and using it with children, adolescents, adults who are learning this process of self-advocacy. I want to ask you, what are the developmental stages of self-advocacy that you mentioned? What does that mean, and why is it important?
Dr. Shore: Well, those developmental phases, they were developed by Kassiane Sibley, who is a co-author to my book, ‘Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum’. And I wrote this book with my co-authors, because I realized that self-advocacy was needed, and nobody was talking about it. And so, she came up with six levels of self-advocacy, six developmental levels of self-advocacy. They began with initial discussions very much like we were just talking about, where you talk with the person. And it’s basically a kind of like a counseling session. And we work through what the challenges are. And because that person is not quite ready for direct discussion, we provide that support, maybe completely with that person there. And it’s more of a situation of, “Meg, now that we’ve figured out what needs to be done, I’m going to show you how it’s done. So, you’re going to observe.”
As we get to the middle stages, it’s going to be a shared responsibility between the facilitator and the advocate. And that might include writing a letter. So, maybe you’re better at writing letters, and communicate better that way, and you write a letter to the teacher with whatever support you need to get that letter done. And that way, the advocacy occurs that way. And then finally, when we get to the more independent stages of self-advocacy, that’s where you’re doing it on your own. And sometimes, you’re coming to me for advice as a sort of consultant. Or, sometimes you just go and do it, and you report to me how it happened, how it went.
Meg: This is great, and I love this shift from ‘All of the work, all of the magic happens in our one hour a week session’, to, ‘We’re teaching a reproducible process that the autistic client who we’re working with over time becomes increasingly good at using and confident in using that they can carry it into their lives’, not just we figured out something and implemented it for them, did it to them in our session. I imagine that has such a greater impact.
Dr. Shore: Yeah, and that’s so important, is we’re working with. That’s the second ‘A’ of what I call my ‘Four A’s of Autism’. Where first, we’re aware of a challenge. So we can call that ‘Awareness’. And then the second ‘A’ is ‘Acceptance’ — all right, we know these characteristics are here. They’re not going to change. But we can work with, as opposed to against. And these are examples of working with these characteristics. And then the third ‘A’ is ‘Appreciation’, where we value what autistic people can contribute to society. And then the fourth is ‘Action’. Action is the work. First three ‘A’s together, the work that we have to put in to initially identifying what challenges are for the autistic person. And eventually, as you said, transferring that work to the autistic person so that they can do it on their own, and to become more accepting of the characteristics. So, I accept that I’m sensitive to recessed lighting fixtures. I don’t try to therapize it out of me, or get used to bright lights, it just is, and I can work with it.
Meg: I love that. And that’s — we heard a parallel process in Amy and Jacquelyn’s talk on day two about our own relationship to autism. And I love thinking about that. Where is our client with that in terms of understanding their autism, their strengths, their needs, and the process of self-advocacy. It’s also a good reminder for us to be strengths-based in the solutions we’re coming up with. It’s not that we need to teach them how to self-advocate in the way that is typical of a non-autistic person, we need to teach them to self-advocate, you’re saying, in a way that plays on their strengths and will be effective.
Dr. Shore: Yeah, exactly. And related to that, you might have noticed there’s a word I haven’t used yet, and it begins with a ‘W’. When we talk about strengths — and I see this on reports and IEP’s all the time — was the strengths and weaknesses section. Now, ‘weakness’ is kind of a static word, has too many negative connotations. So, if we replace the word ‘weakness’ with ‘challenge’, and that suggests that this is something that we can work with, work around, accommodate for, overcome, or even just make a considered decision — “You know, this challenge isn’t really worth addressing. And I can still lead a fulfilling and productive life. So, I’m going to go do something else.”
Meg: That’s great. I love all of this. And I want to ask you, I always end with this question, before we shift over to Jessie, you’ve presented us with a really concrete framework. And each of these steps actually would take a lot of work for any of us to become good at. There’s a lot of foundational skills that therapists, non-autistic therapists, need to be cultivating in ourselves and practicing to be good at this process. And it really is a shift from what we are doing in a more traditional therapy process. So, if there’s just one takeaway that people get from your talk today, if there’s one thing you hope OT’s start doing, or start trying to do, or do differently, what would that one takeaway be?
Dr. Shore: My takeaway is to turn away from thinking of autism as a series of disorders, deficits in disabilities, and turn towards a model of ability. So, we need to be asking, “What can the autistic person do?” And then, “What can be done as an occupational therapist to tear down those barriers that are preventing that person from being successful?”
Meg: Thank you so much, Dr. Stephen Shore, for this great interview. And thanks to all of you for listening.
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