Interview between Speaker 1 (Meg) and Speaker 2 (Zosia Zaks)
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Hey, podcast listeners! Meg here. If you’re a professional who listens to this podcast, chances are your work reflects both your values and pro-neurodiversity practices. But if you want to test that theory, I made a free quiz just for you. The Learn, Play, Thrive quiz takes less than two minutes to complete. And after you finish it, you’ll get tons of information about your strengths, your blind spots, and possible next steps. You’ll find the quiz at learnplaythrive.com/quiz. So, give it a shot, see how you do, and maybe learn something new. Now, here’s the episode.
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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 21 with Zosia Zaks. This interview was recorded during the live Neurodiversity in the New Year Summit in January of 2021. After re-listening to this talk to make it into a podcast episode, I had such a hard time narrowing down the title for the episode, because we covered so much content and a lot of it was totally new. We talked about how making shifts to support neurodivergent people really makes things better for everyone. And Zosia gave tons of concrete examples of this. We talked about the different kinds of accommodations, including Zosia’s favorite, ‘attitudinal accommodations’. And if that piques your interest, you’ll definitely have to listen to the interview to learn more.
We talked about what really good self-advocacy looks like within the neurodiversity model, and how we can support it throughout the lifespan. And if that’s not enough, Zosia had some great advice for real shifts OT’s can make in our work. Since this was recorded during the live summit, you’ll hear me reference the other talks a few times. Twice I mentioned Sarah Selvaggi-Hernandez’s talk on autistic strengths, which, if you didn’t watch the summit live, you might not have heard this talk yet, but I promise it will reappear as a podcast episode later this year. I also briefly mentioned the Autism Level UP! talk on play, which you heard here on the podcast in Episode 18.
So, let me tell you about Zosia Zaks. Zosia is a certified rehabilitation counselor who has worked with autistic adults for almost 17 years. He is autistic himself, and worked at NYU’s Keeping it Real project where he taught autistic students how to self-advocate. He is the author of ‘Life and Love: Positive Strategies for Autistic Adults’. He also manages Townsend University’s Hussman Center for adults with autism and has been doing that since 2013. There he teaches service-learning courses that examine autism through a social justice lens. So, we’re actually going to dive right into the interview with Zosia, talking about his work at the Hussman Center. Here’s Zosia.
Zosia: We have the Hussman center for adults with autism, which is part of Townsend University. We’re not a traditional service agency, but we have some programs for autistic adults 18 years of age and up, and the adults are coming to us for different kinds of opportunities. And then I’m teaching diversity education courses, and my undergrads are in the classroom with me, but they also participate in the programs with the autistic adults, and it’s not clinical education. So, they aren’t learning how to fix these adults or how to help them. Instead, I get to sort of turn things upside down for them because they think they’re gonna, like, go help disabled people, and then they wind up learning more from the autistic adults. And they come through this experience and a lot of them tell me it’s just really life changing because they really come to see the common humanity in everybody. And I get to work with them learning great skills, like challenging stereotypes and really questioning what it would take to make a really inclusive community.
Meg: I love that. That a theme that keeps coming up, is that learning from autistic people and listening to autistic voices isn’t some sort of duty and drudgery that we must do. It is empowering for non-autistic people and reaffirms our humanity to be better in our own perspective-taking skills, and it feels right. I love that model that you’ve set up. That needs to be replicated widely.
Zosia: Well, I think it’s really work, and I’ll tell you why. It’s because over the last 20 or 30 years or so — well, even 40 or 50, depending on which metric you use — disability policy has really pushed community integration, and that’s wonderful. The problem is, if the community doesn’t want us, then it’s kind of a hollow promise. So, we’ve got to educate the peers and have them tied into why this is really important. And it’s not just because it’s a charitable thing, but society benefits from having all different kinds of people living and working together.
Meg: We absolutely do. We do. And we recognize that with all sorts of other cultural differences, that it benefits everyone and with different strengths, and different skills, and different interests, and different abilities. But we’re kind of playing catch up on autism, on seeing it as something that shouldn’t be changed or molded to be less autistic, but something that contributes to society in a way that we need to recognize and embrace.
Zosia: Yes. And here, I’ll pause for a second. I think we can — we don’t have to have rose-colored glasses. Sometimes, if you can’t do something, it can be very, very frustrating. And we don’t have to deny that. And I think if we use this kind of neurodiversity framework, we can still help people. So, nobody’s saying like, “Don’t help,” but what we’re also saying is that if we’re sort of destigmatizing that learning process — because frankly all humans are learning and growing all the time — and sometimes, out of our frustrations come a very innovative force. So, it’s a both and way of looking at it.
And without that creative force, I do think society would lose so many innovative ways of being together. I’ll give you a quick example. Sometimes my students will go and they’re going to be in fitness with the autistic adults, and they’re going to be working out together. And a student will be paired with someone who’s non-verbal, and they’re just like, “Oh, no, what do I do, because you said I’m supposed to get to know them and be friends, but they don’t talk,” and I’m like, “Wait a second. Chatting over coffee is the only way to be friends?” And it’s like, oh, it’s one of those bingo moments. Because it’s like, “Oh, I get what I’m doing in this course,” you know? And so, that’s where I think the change is really powerful.
Meg: Yeah, absolutely. And I love that you’re not putting the whole burden of change on the autistic person in this situation. You’re saying the peers can learn some new skills, too. It’s not that we’re going to say, “We’re not going to support autistic people in the ways that they need support to be more successful,” it’s just that they don’t always have to be the only people doing the work.
Zosia: Yes, and I think if I can jump to you were asking me before this interview about ‘attitudinal accommodations’, I think this would be a good point where I could explain that.
Meg: Yeah, what does that mean? This is a new term to a lot of us. What are ‘attitudinal accommodations’?
Zosia: Well, when we think about accommodations in society, a lot of us can come up with physical examples. Like, if we see a building and there’s no ramp, that’s easy for us to think about, “Oh, we can put a ramp there. And then if you’re a wheelchair user, you have some other mobility issues, now you can get in the building.” But accommodations are not always, you know, physical, or things that you can see. So, I talk to my students a lot about attitudinal accommodations, and what I mean by that is changing attitudes in non-disabled people and what a world of difference that can make in terms of access and opportunity for the disabled person. The great thing about attitudinal accommodations is that they’re free, and very easy to do.
Meg: Can you give me an example of what that might look like?
Zosia: Sure. Actually, I can give you a great example from employment world, although it really reaches across all areas of life. There was a gentleman on the autism spectrum doing really well at his job. And the thing is, he will go in in the morning, and he flies right by the front desk. Doesn’t say “Hi” to anybody, doesn’t even really look up. And he goes, and he does what he’s supposed to do, but he doesn’t really chat or make connections to anybody. And then at lunch everyone goes to this cafeteria and has lunch together, which he doesn’t. He goes off and eats by himself somewhere. And management was asking me, “Oh, are there things we can do to teach him, you know, social skills at work. For example, saying hi to everybody, or eating together,” and I said, “Well, why do we have to fix him? Why can’t we fix you?” And they were like, “What?” And I was like, “Well, for example, I mean, he’s not doing anything wrong in his job. He’s a good employee. So, why can’t you all just say, ‘Okay, we got someone who doesn’t chat too much.’ That doesn’t mean he’s mean or doesn’t like you.”
And it really got their wheels turning, you know. And I said, “You know, it could also be now I’m sort of—”, you know, that’s a good example of an attitudinal accommodation where if the non-disabled co-workers just kind of changed their attitudes about what’s socially expected in the workplace, and got more accepting, and had a wider lens of this, then we wouldn’t have an issue. But it could also lead to sort of avenues of creative thinking or collaboration that maybe nobody’s thought of.
For example, we often assume everybody’s using the same social dictionary. Did anyone tell him that everybody gets together for lunch? You know, we assume everybody knows the same thing. And then if he’s like, “Well, it’s too loud, it’s too smelly,” you know, what about having tea with everybody in the afternoon, or something that’s more quiet? And suddenly it was like, “Oh, yeah.” All these employees were like, “We hate the cafeteria too.” And so, they came up with this idea to have a quiet lunch first, some people who prefer that. And so, it just generates, and that’s the innovative force that I’m talking about. So, we get the attitudinal accommodations in there, and then when we can have these different attitudes and new perspectives, it leads to this kind of creative thinking that really winds up benefiting everybody.
Meg: That’s so interesting. I’ve heard this before, this idea that some of the accommodations that are helpful to autistic people wind up benefiting everyone. That non-autistic people aren’t always as tuned into our sensory preferences, but when some of these changes happen we go, “Oh. That’s way better.”
Zosia: Well, that’s true about accommodations always. You know, I always give the classic example of the curb cuts in the sidewalks. Those are those like little dents in the cement. In the 70’s, no township wanted to pay the money to go get the forklift, and pick up the road, and put the curb cuts in, because they said, “Look. Less than 1% of the population are wheelchair users. Why should my taxes pay for it?” I have my students stand on a busy corner, and do a little sociological experiment, and tabulate who’s using the curb cuts. Probably well over 90% of the people using the curb cuts are not disabled at all. It’s the UPS truck drivers, it’s the skateboarders, parents with strollers.
Meg: Mm-hmm. Yeah.
Zosia: So, accommodations wind up helping everybody.
Meg: So, whose job is it to bridge that gap in the example that you gave? Was this all self-advocacy, were you interacting, or was somebody interacting with the person’s colleagues? How does that process happen in sort of a perfect scenario?
Zosia: Well, if it was perfect, we would just be doing this somewhat automatically. I don’t think we’re in a perfect space, so I do think, to some degree, self-advocates — I mean, we have been driving the conversation. And until we get there, we may have to do a little more of the heavy lifting and say, “Hey, you know—” there’s ways to say diplomatically, “—you know, I’m a good worker and I’m very dedicated to the company, but I just can’t chat and eat lunch with everybody because I get a little overwhelmed from all the noise. But, you know, maybe we can hang out later.” So, I think self-advocacy is really important. I do.
Meg: Yeah, it is. And this has come up in the summit, that there’s this skill of being okay with not being perfect, or with needing something that Sarah Selvaggi-Hernandez was talking about in her talk on autistic strengths, that is sort of a skill that autistic people are so much better at than non-autistic people. I was trying to imagine saying, “Hey, sometimes I do this sort of socially unacceptable thing, but I really mean well and I just want you to know that about me up front,” that feels very vulnerable and very hard.
Zosia: It can be, right. But you see, when you were saying a minute ago that sometimes non-disabled people have like a sensory issue, or need routines, or all these other things, they just don’t necessarily realize it. I think that’s true about self-advocacy too, because if you really dig deep, you’re self-advocating all the time. And it is a vulnerable process but that’s how we get along with each other and, you know, make sure that other people are aware of what we need. And we don’t always get 100% but then we have that negotiation or we have that compromise, so that we can all feel comfortable and get along with each other.
Meg: Yeah, absolutely. I you know it’s a process that the more we see modeled from people who are more practiced at it and better at it, too, we can learn from as well. I think that’s another example of it being a mutually beneficial process, of seeing effective self-advocacy can inspire more effective open, direct, but kind self-advocacy.
Zosia: Yes. And in a way, you know, this goes back to the conversation about what society gains when we have all different kinds of people, because actually I think our society does err too much on sort of indirect communication, and in kind of trying not to say it even though you are kind of trying to say it, and then all kinds of miscommunication happens. And so, maybe we do bring to the table that it’s okay to say, “Hey, these are some of my needs. This is what I can do. Where can we have a compromise or negotiation so we’re both comfortable?”
Meg: Yeah, that sounds lovely. I agree with you that that would benefit everyone. I want to talk a little bit about your book and tie this into adulthood in general. So, your book is called ‘Life in Love: Positive Strategies for Autistic Adults’, and you talk about so many areas. This is like an OT dream for an OT who works with adults or are in transitions to adulthood — maintaining a home, dating, work. But for the therapists out there who are working with adolescents, or with young adults, if you had just a few pieces of advice, a few places to start, what would you suggest?
Zosia: Sure. I’m glad that you asked that question because for a number of years at Townsend, I did teach a graduate course on adolescent and adult issues. And the cohort of students typically were elementary school teachers and therapists working in early intervention, and they hated that this class was required because they were like, “It has nothing to do with our early childhood work,” and then they would walk out and be like, “Oh, that was the most important class.” Because I think what they realized, which is hard to forget, you know, when you have a little person and you’re trying to just help them get through that Thursday, or just help them get through second grade — adulthood is a very long time. And all that you’re doing in early childhood is so that they can have the best adulthood possible. That’s what we’re really aiming for.
So, having that longitudinal perspective — where is this little three-year-old or fifth grader, where are they going to be going, you know. And there’s a lot of things in that young space that traditionally, at least, our focus was, you know, maybe a little bit of, “How do we fix this.” And I really do think we’re seeing a paradigm change, so sometimes the examples really illustrate a point.
So, there was a young, young woman who repeated movie dialogue pretty much whenever she could. And I agree with math teachers that if you’re in the middle of math, okay, so now we have a little bit of an issue. As in math class you’re supposed to be learning math, and maybe it is distracting to the other children. And so, that’s where that negotiation piece comes in. But if we only stop there, like, “How do we get this kid through math class?”, we’re missing a huge piece of this person’s life. Because this is who we’ve got, and they are going to have to have as good of the life as possible, and so we need to start asking, “What else do we need to see in this picture of who this person is?”
And I had her start volunteering at a nursing home where they are desperate for volunteers, because the elderly people in the nursing home need company. And even in the best scenarios, families are busy, nurses are busy, staff are busy. So, she came and would recite movies for them. And they would even say, “Oh, could you come back and recite this movie?” and she would watch it on the weekend, so it became this kind of game among them. And when I checked in with her a few weeks into this, I said, “How’s it going?” She said, “It’s the first time people like me.” And that was just so heartbreaking. It even makes me emotional, even now, years later. And I was like, you know, we have to do something about that because that’s just not the space that we want people to be in.
So, again, I’m coming at this from a balanced perspective. I get it that there’s things we need to teach or skills that need to come on board, but that can’t be the end of the conversation. We also have to figure out how to hold these folks in dignity, and see what they’re doing, and where society needs someone who does what they do.
Meg: Yeah, that’s such a good example of a strengths-based approach that you said, “What Is she good at, and who needs that,” and you figured it out in a really creative way. And I appreciate you pushing us to take that to the next level. It’s not, “Oh, now she’s successful in math class.”
On Monday, we talked a lot about positive autistic self-identity and how important, how paramount that is. And you’re really illustrating that there, that she shifted how she saw herself as likable, as important, as needed, as liked. And that’s probably one of the most important things somebody could have done in that moment.
Zosia: Yeah, the nurses were like, “Where have you been?”, you know. When people are engaging positively, learning doesn’t stop. She figured out how to keep a schedule so she knew when she was going over there. And then some of the residents were like, “Oh, you should stay for lunch.” And so, she was getting the salt. And if they dropped a napkin, and the cafeteria folks were like, “Wow, you could be an assistant,” and it rolled into a job. And, you know, so what I’m getting at is when we stop with just a plan to refrain from movie dialogue in math class — which may be very valuable. I’m not saying it’s not that. But that’s just one piece of the equation. Because when we don’t have people in those kinds of spaces where they feel constructive and they feel valuable, that’s where the real learning takes off.
Meg: That’s interesting, because when you say that we should start thinking about adulthood, even with very young children, I think what comes to a lot of people’s minds is probably employability, maybe adaptive living skills. But this example that you’re giving is a little bit deeper than that, and a little bit more of a roundabout but more important road to it. That you’re not like, “Let me make sure she can sort by color, because she might need that one day when she’s an adult.” You’re saying, “Let me help her find who she is, and who she wants to be, and where she can find value and feel valued, so that she can build her life on that.”
Zosia: Yeah, because when people find that, they’ll figure out the skills to do it. You know, the skills — you know, again, I don’t want to over-simplify, but human beings are amazing. And all the years that I’ve been doing work, no matter what someone’s IQ said, I’ve never met a dumb human being. They will figure out how to do the things they want to. The thing is, they need to be in a space where they can do those things constructively in a healthy way.
Meg: Yeah, I really appreciate that shift. I think that is a much more nuanced way of thinking about adulthood with our young kids than most of us have previously arrived at. It’s a lot to chew on and synthesize. I want to fill you in on the comments because I see them. First of all, Krista, when she was diagnosed as autistic at 20, the person working with her gave her your book. And she loved it.
Zosia: Aw, thank you.
Meg: I think it’s lovely. And that story, it sounds like it really resonated with a lot of people. So, speaking of work, tell me about the occupation of work, because I know this is somewhere that you have done a lot of work in this area.
Zosia: Yeah, the words can be tricky, right? Because when we hear the word ‘occupation’, we think that means your job. But — and correct me if I’m saying it wrong — but my understanding from the OT’s I work with, the idea of occupation is broader than that. Occupation is things that you occupy yourself with.
Meg: Yeah. So, meaningful activity of being employed in a job.
Zosia: Yes. So, a lot of times what I have seen is very heavy emphasis on, again, skills that you need for a certain job. Like, okay, if you’re going to work in a restaurant, so you have to learn how to fry sandwiches, or wash silverware, or whatever. And that’s very valuable. I never want to come in and say, don’t do skills. That’s not what I’m saying. But I think what we forget is, there’s a way to be an employee, whatever your job is, and there are certain ideas that our society has about working and being a worker. And we don’t learn by osmosis, or just sort of getting it the way many neurotypicals can. We tend to learn much more directly, and or maybe sometimes we can get it from sort of immersive experiences, but it may take longer because of processing.
So, what I find over and over again, in this world of work and getting ready for employment, is that what people on the spectrum need more than or at least in addition to skills training, is just practice being a worker. I can give you a great example. I run a work skills program at Townsend. It’s been suspended because of the pandemic because we really can’t do it virtually. But we go around to different job sites on campus, and we’ll try different jobs. And so, I had a young gentleman who really, really wanted to work in restaurants, food service. So, he was thrilled that we were going to the cafeteria.
And so, we were there, but a few minutes in, the chef asked him to bring out the garbage. And he said, “Oh, no, I’m working in food service.” Okay, so that’s, you know, a very rich learning moment, okay. When you have a job as a chef — or an airplane pilot, or a cashier, anything, architect — is there is the job, right? But then there’s all these other things around working. And then there’s different positions, right? So, if you’re the boss, you kind of get to tell people to take the trash out. But if you’re the worker, you usually don’t, right. But where is that written down, right? Okay, and we’re not just going to get that by, you know, the air.
Meg: Great. So, since implicit learning is different for autistic people, autistic people do learn plenty of things implicitly, but not necessarily the same things that we do. We, as the person supporting an autistic person working towards getting a job or working a job, have to be able to watch and observe or even predict those disconnects, and teach explicitly in a meaningful way so that they can be successful. Is that a good summary?
Zosia: Yeah, and I think two things that I always advise; one, breaking things down. So, in that case, it would have been helpful to say, “We’re working in the cafeteria and that’s usually tasks that have to do with food. But what else goes on in the cafeteria? What happens when there’s garbage? What happens if everything drops on the floor? What happens if a customer needs an extra fork?” So, getting those conversations, going, watching videos, maybe going and watching the cafeteria a few times before you actually go to do the work there. And the other thing is, leaving a lot more time. You know, people will say, “Well, you know, he’s been doing this for a few weeks. So, shouldn’t he get it?” No, not necessarily.
People have different rates at which they absorb what it is you’re trying to get them to get, right. I also think a third thing that is really important but under-looked at is, we often provide services for disabled teenagers, and youth, and adults in a vacuum, by which I mean, they’re just there with other disabled people. And so, we don’t get that rich, peer-to-peer sort of mutual support. And I don’t mean that the peers are always the ones who are teaching the disabled people, because in fact, it really does go back and forth. And all young people are sort of getting a clue about how they’re going to be an adult, and how they’re going to be at work. It’s not true that autistic adults are the only ones learning, it’s just that they have a different learning profile per se.
So, the other reason why I think those peers are so valuable, is because it is developmentally appropriate for someone in their teens or 20’s to be more motivated and interested in same aged folks, okay. Not two or three, right. At three, they love their parents, they love their teacher. When I’m hanging out with 19-year-olds, I’m old. I’m not interesting anymore. So, if I can have other 19-year-olds there, and let’s say all the bagels dropped on the floor, and the other 19-year-olds aren’t, you know — I don’t know, here I’m speaking pejoratively, I don’t mean to over-stereotype autistic people, but we can see, okay, what are they doing, and maybe I can kind of handle this situation in a similar way, you know, just any number of things come up. And those peers are really — I hate to use this term, because it sounds so vague, but they sort of vibe off of each other. And there’s just a lot of rich learning that goes by.
I can give you a little example, there was a time where we were working in the cafeteria, and then we were all going out. And the young people sort of were going out like in a group, and there was one gentleman who was straggling behind. And they were like, “Hey, so and so, come on, you know, come walk to the bus with us.” And he thought that they were like treating him like a baby, because he may have experienced that a lot. And they’re like, “No, dude, we just want to hang out with you. That’s what people at work do.” And he was like, “Oh,” and you know, it was just a perfect moment. He’s gonna get that from them a lot more than if I’m there saying, “You know, everybody at work socializes,” but when you’re there with your buddies and they clue you into these things, you know.
Meg: I actually really liked that you used the phrase ‘vibe with each other’ because that couldn’t sound more different from the awkward, stilted skills training group where you sit around the table and teach a skill and have them practice it. And we’re certainly hearing to stop doing social skills groups, start doing leisure groups where people are working together around shared interests, and let those opportunity for mutual understanding and the learning of new skills needed to accomplish one’s own social goals. Let those arise naturally. And I love that translating to this learning job skills together example, that we’re not doing it in a contrived way. They’re vibing off of each other.
Zosia: I have another really great little story. I was working with a young gentleman who wanted to be a film director, and he had a lot of talent. We’re having meetings and talking about this, but we’re also having conversations about things he could do. He was very good with computers, for example, and a mutual colleague of mine needed her new computer set up and was willing to pay him to come over and set it up. And he was sort of dragging his feet like, “No, I need to concentrate on my film career.”
And I was running a peer-to-peer support group that would meet at Starbucks. So, we were all down at Starbucks. And one of the other gentlemen said to him, “Hey, did you put that lady’s computer together yet?” And he said, “No, I’m working on my film career.” And the other gentleman was like, “Dude, it’s $50. Just go plug in her computer.” And he was like, “Oh, okay.” All those months of counseling with me, right? And what it took was a friend being like, “Dude, you know, what? Go make some money on the side while you’re becoming a filmmaker,” you know, like, it’s those moments that you can’t put in a social skills manual.
Meg: Right? Yeah. No, that’s great. And so, the takeaways that I hear from what you’re saying are; one, we need — non-autistic people supporting autistic people especially — need to learn as much as we can about autism learning styles so that we can anticipate these things, so that we can teach the occupation of being a worker rather than just discrete skills, which, like you said, those are going to come, it’s these other things that might be missed because non-autistic people are learning them implicitly.
Taking it back to the double empathy problem, which we talked about on Monday, and I talk about all the time on my podcasts, that non-autistic people are bad at taking the perspective of autistic people. We are bad at using the social skills that are effective for autistic people, and vice versa. But it goes both ways. So, we really have to work here if we want to be effective therapists to try and understand how our clients might experience a new job situation. And I want to bring this back around to self-advocacy. So, for those of us thinking, “Oh, I need to do a better job teaching self-advocacy, but where do I start? How do I do this?” Well, do you have any advice on teaching self-advocacy?
Zosia: Yes, and this might sound very strange, but it actually starts when people are very, very young. And what I mean by that is, even when kids are little, it’s almost giving them permission in a way to have some agency. I think, sometimes with disabled children, where, again, sometimes — I say this cautiously, because I do think some things are changing, and it depends on many factors — but sometimes we can be a little direct, you know. Like, you’re gonna work on these skills, and then after school, you go to the OT, and then after that, we’re gonna work on dinner skills. And you know, I think having some agency, and choice, and being supported in that starts to build that kind of communicative ability to say, “This is going to work for me, this isn’t going to work for me, I need a break. That doesn’t mean I’m getting out of what you want me to do, but I’m gonna do it better if I could just have five minutes to calm down.”
So, but again, when I teach self-advocacy, I always emphasize that it’s negotiation. Self-advocacy is not ‘I say something and then I get whatever I want’, self-advocacy is a way to meet your responsibilities, not get out of them. It gives you the opportunity to negotiate with people. I always give another example of when one of my own daughters was little, and she was tasked with feeding the cat. And she had a really bad sensory issue with the feel of the dry cat food. It can be almost scratchy for some people, and it just, yech. And so, everyone was like, “Oh, so, like, I guess she didn’t have to do it.” And I was like, “No. We had a whole conversation about like, ‘Okay, what do you want to do? What do you need so you can get this job done?'”
Well, you know, condensing it here, but she went and she got her mittens, her winter mittens, and then she was able to do the job. So, we talked to about how you can say, “You know, I can do the job, I just need to wear my mittens.” Even at that young age of four and a half, five, you know, that’s where we’re starting to get that flow of conversing about these things, and how do you phrase what you need but in a way that’s in that negotiating kind of spirit, not just like, “Oh, I have a sensory issue, so I don’t have to do my job.” Like, that’s not it, right.
I also want to emphasize that this is — when we talk about self-advocacy, sometimes people think, “Well, you know, that’s for those more verbal, you know, more cognitively-angled, folks.” And actually, no, the concept of self-advocacy and self-determination was generated for those with the most significant functional limitations, so that they could have some say in their life, and they could ask for the things that they need. So, it just may take a little more creativity.
Meg: That’s interesting. I didn’t know that. So, what about folks who are still learning their needs, and learning that maybe the message didn’t come through to their parents and their therapists to start this young, and I do love that you are speaking to those of us who work with young kids, because this is the place to start. But let’s say we’re working with an adult who is just starting that process, what sorts of things do we have to work through with them, in order to get to a place of more effective self-advocacy?
Zosia: It’s hard, I’m not gonna deny that. And it’s interesting that you talked earlier about autistic learning profiles, because another thing that we’re seeing from science is those of us on the spectrum may have lower interoception. And what that means is our awareness of our bodies, how hungry we are, how we’re feeling, that can be hard. It can be very, very hard for us. People will say, “How do you feel?” I don’t know, I really don’t know. So, just being gentle with yourself, and accepting that you may not know right away, it’s okay also to take some time and say, “You know, I don’t know how I feel about this. I’m gonna think about it for a few minutes, few days, and then I’ll get back to you.” That’s okay.
And then it’s also — I think we internalize so many negative messages. Sometimes, you know, the the fancy term in the mental health world is ‘cognitive reframing’. But you don’t even have to use that fancy term. What it is, is you start thinking about things in a new way. Like, for example, I worked with this gentleman, and he had been fired from a few jobs, because they constantly said he’s slow. So, he was like, “I’m slow. I’m never gonna be able to work. I’m the slow guy.” And then we went to the school store and they have — you know, it’s a college, it’s a university, so they have all those glasses, like little shot glasses with the university logo and the glass cups with your dorm on it, or whatever. And they said, “Okay, there’s rows and rows of these things, and we need you to take them off, dust the shelf, dust the cups, put the cups back.” Well, guess who is the expert? The slow guy.
So, when you’re discovering things about yourself, like, “Okay, I’m slow,” or, “I just don’t last too long in a loud place,” that’s not necessarily a negative thing. That’s just data. It doesn’t mean you’re bad. It’s data. So, if you find, for example, that you just cannot last in loud places for long, you know, that are really loud, and let’s say you want to work in food service. That’s data. So, you could maybe work in a quiet tea house early in the morning. Okay, working in a brew house on the weekend shift isn’t going to work for you. You understand what I’m saying?
I think just getting to know yourself, giving yourself that time, giving yourself permission to not be sure and to give yourself experiences to find out. It’s okay to go and find out. I had a friend Patty Clark, many years ago, great self-advocate. And she said, “What’s wrong with failing? I can always get up and fail something new.” You know, I talk with parents about the civil right to fail. We have like a quote-unquote, ‘normal’ 17, 18-year-old and they’ll have a summer job. And you know, maybe they blow it off to go to the beach or something and they get fired, and everyone’s like, “Well, he’s a teenager.” Then we have a disabled adult who’s in the service system, and they go to a job and it doesn’t work out and they’re like, “Oh, my goodness, he’s unemployable.” I’m like, “No, he’s 17.”
Meg: Yeah.
Zosia: This is what happens as we grow up, and even when we’re a little bit older, 30’s, 40’s. I’m not saying you get it all figured out by 25. You know, we’re all discovering things about ourselves. And so, it’s okay to try something and then be like, “Well, no, that didn’t work.” That doesn’t mean you’re a failure, it’s just data. It didn’t work. So, let’s explore what didn’t work about that, and find where it might work better.
Meg: I love that reframe. I think often, especially OT’s, see our job is to figure it out, to figure out what to try, to try it, to see if it worked, and to implement it. And it sounds like that process is possibly important, but maybe less important than making sure the autistic young adult or adult knows how to do that process themselves. And figure out what works for me here, what doesn’t, how can I apply that, how can I be successful, what do I need, with the explicit awareness of the right to fail, the right to take risk, the right to fail, the right to try again.
Zosia: Mm-hmm. And also, the right to take some time to figure it out. So, even on something that may seem simple, like, you know, “Are the lights in here bothering you?” “I don’t know.” Okay, all right. Well, let’s try and see, and give it some time, and give him permission to figure it out. And it doesn’t always have to be figured out in 2.6 seconds.
Meg: That’s a really good lesson, I think a lot of us need to hear that. I think the instinct that a lot of — I’ll speak for OT’s or for myself — can have is to need to make progress in a session, to need to have the answers or find them. And sometimes that means acting way too quickly and not leaving space for that process. So, somebody said, “I don’t know,” we might say, “Well, think about how it feels behind your eyes, and think about this, and think about that. Now do you know?” And those questions could be useful, but that rushed process is maybe not.
Zosia: Well, and even sometimes for some of us, those questions — now there’s more language we have to process on top of figuring out how we feel. So, sometimes it’s better to just sit with it. That’s hard for us to do in our culture. Our culture is very speedy, and we don’t like pauses, and we feel awkward in silence. But allowing ourselves to explore that, at least a little bit, can be very helpful.
Meg: Zosia, I’m curious. Is being comfortable with silence, and being comfortable with pauses, and things that people like me might get stressed about, non-autistic people — would you say that’s also a strength of autistic people? Or is that more of just a personality trait?
Zosia: You’re right, it depends. I mean, that’s a hard question to answer because people do have a wide range of personalities. I think autistic people who have had a chance to be in autistic spaces, and meet autistic people, and develop sort of their own autistic cultures can have that reframing. And so, they can be sitting together and if someone in the group is just quiet, that’s okay. And it goes back to those attitudes of accommodations. We can decide he’s not participating and doesn’t like us, or we can decide he just is doing it his way, and we still want him here. But I have seen autistic people get frustrated with one another too. So, that does happen. But I think if you’re in a place like the Hussman Center, that’s where we have an opportunity to sort of unpack some of that and say, you know, where is this frustration coming from, and can open ourselves up to different kinds of people, and different ways of doing things. So, that’s why I think those kinds of projects are so important.
Meg: Absolutely. Yeah. I asked that because it feels like a very neurotypical problem, this need to fill up spaces with words, and discomfort with what could be seen as awkward. But I appreciate your uncertainty in your answer, because the other thing that I keep hearing and talking to autistic people is, we don’t really know what a fully autistic, untraumatized, fully themselves, person develops like, because autistic people are developing in the pressures of neurotypicality, and the trauma of everyday life, and without proper access to autistic spaces. So, to some degree, we don’t know.
Zosia: Mm-hmm. And I do think there is the potential, because I have seen it in autistic spaces for autistic people to flourish in ways that may be surprising to themselves or their families. You know, so many times when someone is new to the Hussman Center, the family will say, you know, they’ll be quite incredulous that he could go to the art program, and be there for an hour and a half, and not have some problems. And we’re like, “It’s okay, let’s try it.” And he’s okay, because of those attitudinal accommodations, and because he has that space to be himself and negotiate how he’s going to be there. So, I think that that’s an important opportunity too, I think, for occupational therapists to think about — peers having peers in the mix, that’s so important, and also having spaces where things can go the autistic way.
Meg: Yeah, absolutely. I can’t imagine, you know, never having access to a space that was only women, and I’m otherwise in the dominant paradigm. So, that’s the only example I can personally imagine. But it sounds terrible, and I wouldn’t be able to fully develop into myself without that. And so, it’s interesting that it’s taking us so long to acknowledge and support this need for autistic-only spaces, because we’re so obsessed with the peer models, as if we need non-autistic people to constantly be teaching autistic people things, whereas we’ve just highlighted over and over again how this is really a two-way street of two cultures learning about each other.
Zosia: Yes, and I think you raise another good point, which, again, you know, I keep going back to the Hussman Center. But that’s why we really emphasize with the undergraduates that they aren’t there in some role, you know, they’re on equal footing, you know, and that comes out of theory. I mean, there’s theory behind this, you know, there’s contact theory that sociologists and anthropologists have looked at. And so, we break down those barriers, and we can reduce discrimination and heal people when they can meet each other sort of on that equal playing field. So, when I say mixing in the peers, that’s more what I’m talking about, not go get some peers to be the teachers or something.
Meg: Right, absolutely. Okay, I want to tie a lot of this back together with one last example. So, thinking about work, one example that I’ve heard a lot is a person who can learn the tasks of the job, does really well at their job, but whatever they’re doing on their break time — and this is similar to your example of the person having social differences with how they greeted people — but whatever they’re doing on their break time causes them to get fired, because it’s making their co-workers feel uncomfortable, because it’s not something they’re used to seeing, or customers are complaining. Maybe this person is walking around stimming, doing whatever it is they need to do to get to a good place on their break. We talked about yesterday, in the talk on play with Autism Level UP! how play and leisure should be what is restful and restorative to the autistic person. So, I know that we don’t want to say, “We need to teach this person how to do exactly what their co-workers are doing on their break,” because that’s not what anybody needs on their break is to do more work. So, what are your recommendations? Like, how do we tie in, what do we do, where do we start? Attitudinal accommodation, self-advocacy? What do you think?
Zosia: I think a mixture of both. My answer is holding the reality that we’re not in a perfect world yet, at all. Okay, so, in an absolutely perfect world, I would be teaching the customers or teaching the co-workers. I would be providing some kind of what I call peer education, that this is what this person does to relax. And so, you may see some of these behaviors, but it’s totally harmless. They’re just relaxing, and you do things to relax, and he does other things to relax, and so we’re gonna let him relax on break. You can still come in and buy your cookies or do whatever you’re doing, and it should be no issue. Now, we know that we’re not at that world yet, so that’s why I keep using that word negotiation.
So, I wouldn’t take away this person’s right to stim or pace on their break, but can we have conversations about where it’s okay to do that. So, that might be, I don’t know the specific environment, but maybe there’s a quiet room off to the side that’s not in use on his break, or maybe there’s a basement. And so, the co-workers in the basement know what’s going on, because they’ve had that peer education, but he’s not on the floor where customers might not understand. So, again, it’s getting those conversations going, but you have to be in that space that it’s the onus isn’t always on the autistic person, and the non-disabled people have to be willing to sort of meet halfway. Okay, so yes, I want a perfect world where customers wouldn’t be complaining, and we can work on that, we can start getting there, and that’s what I’m doing with the community education at the Hussman Center, but I know we’re not there yet. So, that’s where we could say, “You know, we see that you like to stim on your break. Some of our customers are still unfortunately confused about autistic behavior, so we need you to do it in the conference room.” I think that’s a fair compromise.
Meg: Yeah, that makes sense to me, and I can imagine that paradigm shifting because it wasn’t long ago that people were apologizing if you had to see someone with physical disabilities, and I’m using air quotes there as if it’s some actual burden, right. And now, that isn’t the experience. You’re not surprised, or put off or offended in some way, if the person working in a store where you might go has a physical disability, but that came with people doing it. With the people breaking that barrier and sort of forcing that attitudinal accommodation over time.
Zosia: I’m glad you brought that up because part of the negotiation, I would say, is to not stop there. And I would say, “Okay, for now, we’re going to have you do your stimming in this area over here, but we’re also going to do some consumer education. So, maybe you can make a nice poster about how our store hires all different kinds of people, you may see neurodiverse people working here, and these are some of the behaviors they do to relax or to get their jobs done. And we’re accepting here.”
Meg: That’s lovely. I hope some, you know, small store owner or large store owner watches this and says, “Let me try that,” because that is another example of something that benefits everyone. Because if I’m seeing somebody stimming and I’m feeling uncomfortable, that would be useful for me in my life to say, “Oh, I get it now. I understand better. Now I don’t know why I felt threatened and uncomfortable, but now I don’t.”
Zosia: Yeah, and if you had a poster in said store, and someone went to Customer Service and said, “Oh, I see this guy rocking back and forth over there, I’m scared.” Customer Service could show them the poster and say, “Oh, you see, well, we have all different kinds of people working here and that’s what he does to relax.” Okay, so you start destigmatizing. And, in fact, I see this slowly. I mean, we are shifting there. We are. That’s the good news. On an individual level, a lot of us are having to do all this heavy work in these conversations, but when we step back for a second, it really is pushing the conversation. I know K-mart, in Australia, just announced that every single store in Australia is going to have a sensory safe space for customers who are shopping and get overwhelmed.
Meg: Interesting.
Zosia: They’re going to have sensory safe shopping times, where the cash registers volume will be turned as low as possible, they won’t play background music, there’ll be more extra hands on the floor to help people with shopping, and they can use that break space if they need to, and they can also get a map of the store in advance, which I was talking about in my book over 10 years ago — I think it’s almost 15 years — you know, they’re catching up, right. The world is catching up.
Meg: Yeah, those are also examples of things that would probably benefit everyone.
Zosia: Well, yeah, you know, funny thing is most people have heard of sensory safe movies, where you go to the movie theater maybe on a Saturday morning or a Tuesday night, and they don’t turn the lights all the way off, and you’re allowed to rock back and forth, or stand up, or pace, and you can bring your gluten-free snacks if you need to do that, and the volume is not horrendously loud. And I went one Saturday morning, pre-COVID, just because I always am going around and checking things out in my local area, saying hi to families that I knew, and that kind of thing. And suddenly I see these vans come from the local assisted living. And I was like, “Oh, this is interesting, what is going on with this?” So, of course, I always go and talk to everybody. I was very diplomatic, I wasn’t like, “Why are you here?” But I was having these conversations, and they were telling me, “Look, we like that the volume is lower because when we go to the full volume movies, it’s too loud or it causes our hearing aids to buzz, and we don’t want it totally dark because we might fall. And we love seeing the kids.”
Meg: That’s wonderful. I love this.
Zosia: So, you know, it’s an investment upfront but it winds up helping all of us.
Meg: Yeah, that’s great. I think it was a different interview with Sarah Hernandez, who spoke on Monday, where she nudged us from society being able to say, “Oh, that’s okay that they do this thing that’s different,” towards, “How wonderful! How wonderful that you can express your joy or get your frustration out by moving your body freely,” or, “How wonderful that you have such a rich sensory experience but sometimes you need a break from it, because my sensory experience is pretty shallow.” Not that it’s everything about being autistic is more wonderful, but that we can see some of the things that are, and not just accept them but also say, “Oh, that’s cool. That’s interesting.”
Zosia: Yeah. And also, to be open to what it can bring to the rest of us. Like, we have a dance program, and the teacher will say something like, “Okay, we’re going to go outside on a walk, and you’re going to make a movement that is something you see in nature that you like, or that you want to be,” and the autistic adults always just dive right into it. They’re like, “Okay, I’m going to be a bush,” and the neurotypical students are a little embarrassed, and they don’t know what to do, and they’re like, “Really, I have to be a bush on the sidewalk?” You know, and then they see these folks who are just very open to trying different things and not so worried about how the world is going to react to them, or what it’s going to look like, and some of them don’t use speech, and so this is just a wonderful way for them to express themselves. And a lot of my students say that they come out of that experience having more self-confidence themselves. So, that’s something that they’ve gained from being in this creative program.
Meg: That’s great. I’m totally sold on your original point that it’s beneficial to everyone. I love these stories that illustrate that. So, if people listening today, especially therapists, OT’s, other types of therapists supporting autistic people, if there’s one thing you hope they take away from this talk and start doing, or do differently, or take into consideration for the first time, what’s the one thing that you hope sticks with people?
Zosia: That’s a hard question because there’s so many things I hope stick with them, but I think maybe just what we were just talking about, to open yourselves up and start looking at traits in this new way. Not the rose-colored glasses ‘everything’s wonderful’ kind of way that, you know, would just not really be realistic. It can be frustrating, but these traits, a lot of times, whether it is frustrating or not, really depends on society and how society structures, including attitudes. So, I hope that’s something that people would think about.
Meg: Wonderful.
Zosia: You know, that context and what impact does the context have. The person might not be so frustrated if society was totally different, including you.
Meg: You know, we learn this in OT school, and then I don’t think we actualize it to its full extent, that we learn to consider the person, and the context, and the interaction between them. And then we go and start working with people and we teach them skills, and skills, and skills, and skills, and often lose sight with neurodiverse people of what else could change, how can we meet in the middle, how can we set something up so that everybody will be more successful. And that’s such an important reminder. I’m feeling I’m going to have to listen to our interview again, because there were so many things today that created subtle or large shifts for me, and I’m so grateful to you for your interview, and for the work you do. And you guys listening, go to the Aha! Moments, what did you learn, what did you like? Thank you so much, Zosia.
Zosia: Thank you, thank you very much for having me.
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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.
