Interview between Speaker 1 (Meg) and Speaker 2 (Lei Wiley-Mydske)
Episode 68: Changing the World with Books, Narwhals, and Letting Kids Say “No”
[Introductory note]
Hey, it’s Meg. If you’re an OT or a speech language pathologist who loves this podcast, you’ll enjoy my free training — ‘Four Essential Steps Towards a Strengths-Based Approach To Autism’. This free training is where I bring together everything we are learning from our podcast guests and apply the lessons to our work as therapists. We focus on the concrete things that we can do in our actual work to ensure that it truly reflects our values. We even zoom out and talk in-depth about what we know now about autistic learning styles. Because when we can shift our perspective and truly consider how autistic kids think and learn, we can start generating more meaningful and effective ideas for our therapy sessions to help our clients find more joy, autonomy, connection, and acceptance in their lives. Visit learnplaythrive.com/masterclass to start learning right away.
[Introductory music]
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 therapy 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 68 with Lei Wiley-Mydske. This conversation starts with books, then goes into more books, takes a turn into self-advocacy, and into the powerful message for therapists working with autistic kids. And if you’re wondering, we’ll get to the narwhals too. I’ll tell you about our guest.
Lei is an autistic and otherwise neurodivergent and disabled writer, artist, advocate, activist, and parent. Lei is the Community Outreach Coordinator for Autistic Women and Non-Binary Network. She is the board secretary at her local PFLAG chapter in Washington State, and co-owner and shop manager of the Stanwood Tattoo Company in Stanwood, Washington. Lei is the founder of the Neurodiversity Library Movement, director of neurodiversitylibrary.org, and the creator of Neurodivergent Narwhals. I loved talking to Lei and this conversation is absolutely jam-packed with resources, so make sure to check out the show notes on this one at learnplaythrive.com/podcast. Here’s the interview with Lei Wiley-Mydske.
Hi, Lei, welcome to the podcast!
Lei Wiley-Mydske:
Hi, thank you for having me.
Meg:
I want to start by having you share a little bit about your own story with listeners. Can you tell us a little bit about yourself and how you came to do the work that you do?
Lei Wiley-Mydske:
Well, I’m an autistic adult, but I wasn’t diagnosed until I was in my 30’s after my daughter was diagnosed. And really, like with advocating with her in the school districts and, you know, with therapists and stuff is how I came to do what I do, I found that there weren’t a lot of great resources out there when she was little, and now I’m finding a lot more that I wish was available when she was little. So, that’s kind of how I came to have the library. My daughter and I went to our local public library and we only found three books about autism and none of them were like by autistic people. So, we thought that that should change. So, we started collecting books and going to our local community resource center twice a month and lending books out. And it happened that my husband and I opened a tattoo shop about three years ago with our friends and partners — and business partners — and the library is over there now. So, we’re in a lobby of our small business, and people can come in five days a week and borrow books. And I still do things in our community center like special events because I feel like it’s important to have that community.
Meg:
I love the story how you saw a need and just made it happen. And we’ve talked a lot on the podcast about parents’ first experiences of learning about what it means that their kid is autistic and how to support them are usually so harmful. So, it’s a really impactful thing to increase parents’ access or family’s access to more affirming resources. I want to talk more about your lending library. So, it is the Ed Wiley Autism Acceptance Lending Library. Is it the first autism acceptance lending library, and then they were more founded after yours? Is that right?
Lei Wiley-Mydske:
Yes, that’s right. I was the first one that I think had the specific goal in mind of amplifying autistic voices and promoting neurodiversity.
Meg:
I love that. Tell us about Ed Wiley. Why did you name it the Ed Wiley Autism Acceptance Lending Library?
Lei Wiley-Mydske:
Okay. So, Ed Wiley was my father, and he was a community activist, and he was also disabled. I suspect that he was likely autistic also, but undiagnosed for most of his life. And he just — like, one of the biggest lessons I learned from my dad was like community service. He did a lot of things locally; he ran like food pantries with my mom. And they just did a lot of community outreach and kind of like grassroots type organizing. And so, I learned that from him, and when I wanted to open the library, I wanted to, like, honor him, because I feel like he kind of made me care about the world in the way that I do.
Meg:
What a lovely way to continue his legacy. Can you tell us a little bit more about what an autism acceptance lending library does and why this is so important?
Lei Wiley-Mydske:
So, my library is, you know, I do a lot in my community, and I work with other organizations. Like, I live in a small town called Stanwood and it’s like a rural community, but it’s kind of growing. So, I do a lot of work with like Stanwood-Camano PFLAG, or Stanwood-Camano Alliance for Equity (SAFE). And I do a lot of in-person events. But the good thing, like, the way that I’ve done the neurodiversity libraries and helped other people is like, you do it the way that works for you, like, you know, because not everyone has the ability to go out and be in the public. Some people just want to collect books and donate them to their local libraries, which I think is just as great, and there’s some people who just do mainly online work. And I think that’s great, too. You do what you can in the way that works best for you.
Meg:
I love that. We do need more affirming books in the libraries, in the bookstores, and lending libraries explicitly about neurodiversity like you’re setting up. I think the more we can diversify our approach, the better here. Have you seen a shift in your community in how people view neurodiversity since you started your lending library?
Lei Wiley-Mydske:
I have seen a shift not just in my community, but like in a lot of places, I’ve seen it. When I first began my library in 2014, I remember saying ‘Neurodiversity’ and a lot of people didn’t know what it meant. They hadn’t heard of it before. And even people thought I made the word up, which I have not, I did not do that. Yeah, and now I’m seeing a lot of people use the word and some don’t know what it means, but a lot do. And I like that. And it’s not just from the work of the library. There’s so many activists who’ve been working over the years, and some of them I’ve been really lucky to work with who are really changing the conversation.
Meg:
There does seem to be a little bit of a tidal wave, which is exciting. So, you do events, and sometimes you travel around with your library. Can you share a little bit about that, maybe just some highlights from your experiences?
Lei Wiley-Mydske:
Yeah. So, pre-pandemic, every April, I collaborated with Autistic Women and Non-Binary Network and we did an Autism Acceptance Month event. And we’re hoping to get back into that. We would do like a film screening of movies like ‘Vectors of Autism’ and one year we did ‘Citizen Autistic’, and then we would have like a little Q&A after, and then sometimes we would do like a fun craft, like a narwhal craft for — not just for kids, but for grownups too. And just like, you know, come together and celebrate Autistic culture. And those have always been really fun events. And in the past year, I’ve kind of branched out, being invited to events that are not specifically about autism, just like community events, where I bought a tent — like, a four-sided tent — and I bought some beanbag chairs and I made like a sensory break area. So, now, my library, if local people want to have an event where people feel included, we can have a sensory break area where people can take a break.
And the first time we did that was last year at the first ever Stanwood-Camano Pride Celebration. And it was so exciting because like, we’ve never had a Pride in this town before. And it was so well attended. And so many people came to my tent and just needed a little break. And, you know, there’s a lot of overlap in the LGBTQ community and the Autistic community. So, I felt like it was the perfect place to have it. And so many people who felt like they couldn’t participate in a Pride event were really happy that they could. Because they could take a break, and they could just come to my tent, and we had coloring pages, we had like fidget toys for people to borrow, and books to read, or just like, they could put in some earplugs and just take a nap if they wanted to.
Meg:
I love this. I’m just soaking this up for so many reasons. I mean, what a great example of intersectionality and visibility, but also increasing accessibility for folks so that they can comfortably and safely participate. That benefits everyone.
Lei Wiley-Mydske:
Yeah.
Meg:
Okay, I don’t want to make you pick your favorite books because I know favorites can be so hard. But can you share some book recommendations for autistic kids of various ages?
Lei Wiley-Mydske:
Okay, so, like, I don’t really have a favorite because every month I’ll have a new favorite. But my current favorite is ‘We Move Together’ by Kelly Fritsch and Anne McGuire. And it’s not just an autism book. It’s about all disabilities and neurotypes, and it’s just a great picture book. I love that one. There’s a book for a little bit older elementary kids that I like called ‘Once Upon an Accommodation’ by Nina G., and it’s illustrated by me and Dave. And it’s just like a little book with these fun illustrations. And it talks about different learning disabilities, and basically the process of getting an IEP or a 504 plan and what that means, and what disability means. And, you know, all the therapists you’ll meet, or the teachers that you’ll meet. And it has a little workbook in the back that you can fill out about yourself, which I really like.
And another one for autistic little kids that I like is, it’s called ‘Just Right For You’, a story about autism by Melanie Heyworth. And it’s just such a, like, a powerful affirming book. And I wish that was around when my kid was little. And I think I like the [Yenn] Purkis’ books about ‘The Awesome Autistic Go-To Guide’. It’s like a handbook for autistic teens. That’s a really fun one. I gave that to my teenager when she was in high school and she liked that one a lot. And there are a couple of young adult books I like by — and I might pronounce the name wrong, because I’m not sure how to pronounce it — but Sarah Kapit, I’m not sure. But she’s got a couple of books out and one’s ‘Called Get a Grip, Vivi Cohen!’ and the other one is ‘The Many Mysteries of the Finkel Family’. And I really liked that because in one of the books — I’m trying to remember; it’s been a while since I’ve read them. There’s like a character who’s non-speaking and it’s not a big deal. It’s not about the character being non-speaking. It’s just her friends and her sister, like, that’s just how she, you know, that’s just who she is. And they accommodate her. And it’s not made into this big thing, where that’s like, you know, that’s pretty rare in like, his book, to have that kind of disability representation. And I really liked those books a lot.
Meg:
I love that. I’ll make sure that we include that entire list in the show notes as an easy reference for people. You’ve done a lot of interesting things. So, we’re going to talk about some of your other resources that you’ve created and one is called ‘Neurodivergent Narwhals’. And a lot of people are familiar with them and have shared them with other educators, families, students have used them themselves, and some people might not have seen the Neurodivergent Narwhals yet. So, can you tell us what they are and describe a few of your favorites?
Lei Wiley-Mydske:
Okay. So, the Neurodivergent Narwhals, they’re these little cartoon narwhals that I drew. And I tried to take the concept of like, the neurodiversity paradigm and break it down so it’s a little more plain language and easy to understand. Because when I read — like, I don’t read academic texts. If I do, it’s gonna take me a really long time. I don’t process it as well as other people do, I guess. But I’m really a fan of plain language, like resources so that everybody can learn and understand. So, that’s what I try to do is like these vague ideas about like neurodiversity, and disability justice, you know, and kind of like, break them down a little bit so that they’re easier for people to understand. And then, they can learn more. So, and I chose narwhals. I just really like narwhals. I like narwhals, and I like manatees, but Neurodivergent Narwhals sounded better than Neurodivergent Manatees.
Meg:
The alliteration is fun.
Lei Wiley-Mydske:
So, yeah, they’re just kind of my way to like, take these concepts and make them more accessible to everyone, and kind of fun too. So, I think, probably the first one I made, the first Neurodivergent Narwhal cartoon I made was the autistic play, where like, my child was often told they played in weird ways. And I would see different resources about autism and like, ‘Is your child autistic?’ and it would talk about like, it would just pathologize the way they played, instead of just seeing that maybe it’s like, really creative. And I would see that when my daughter lined things up, a lot of people thought that was weird. But even as an adult, I learned, like, I’m a plant person; I love to line up my plants in the window and look at them. It’s just fun. So, why would you think that that’s a negative thing? So, I just kind of like to reframe how people think about autism, because we’re often told that things are negative when they’re just neutral, like lining toys up isn’t negative, it’s just, it just is. So.
Meg:
It’s a great resource. I love the way you do it. I’ll link to some of those in the show notes as well. You also wrote a chapter in the book ‘Sincerely, Your Autistic Child’. Your chapter was called ‘Change the World, Not Your Child’. Can you tell us about that book broadly, and about your chapter specifically as well?
Lei Wiley-Mydske:
So, the book, it started a few years ago, and it was originally published as ‘What Every Autistic Girl Wishes Her Parents Knew’. And then, the second, like, version, I guess, was a little more inclusive to not just girls, but anyone of a marginalized gender. And it had more contributors in it. And I didn’t really change my chapter very much from either book, except to try to make the language a little more inclusive. So, like the concept was to kind of write a letter to your parents or your caregivers and say what they did right and what they did wrong. And I was a little worried because my parents didn’t always do the right thing. My father had passed away, but my mother was still alive when I wrote it. I didn’t want to hurt her feelings, but I wanted to be honest. And actually, she read the chapter and she — it actually really changed our relationship. And the book came out after she passed away, but she had did have access to my chapter; I let her read it before. And she really, it really changed how she thought about our relationship. And we kind of had got along a lot better in the last year of her life after she read that then than we ever had before. And I think there was a new understanding, because I tried not to have it be like a personal story, but more in general terms, but my mom saw that there were some things that she could have done better. And, yeah, it’s just, she — because I was actually recognized as autistic when I was about 13. But that information was not shared with me until I was like, in my 30’s.
Meg:
Oh, wow. Yeah. We have heard folks say over and over on the podcast that learning they were autistic really started their journey into self-acceptance, sort of away from, “What is wrong with me? Why can I do this?” to, “Oh, I’m okay. There’s people like me, I don’t need to change.” Is that similar or different from what you experienced, not knowing you were autistic?
Lei Wiley-Mydske:
Yeah. I just always — I grew up feeling like I was like, extremely weird and really hard to be around. Because I feel like — I mean, I did have meltdowns after school. And at school, I was constantly trying to get out of school. And at the time, I didn’t have the language to say that I was getting migraines from the fluorescent lights at school, and among other things, but that was a big trigger for me. And I would be sick, and no one will believe that I was sick. And so, yeah, it really did change how I thought about myself. Because like, I grew up thinking I was a weird kid, and just nobody liked me. But then I realized that this is just how my brain works. And there actually were other people who were like me a little bit, and they did like me. And that, you know, I would meet people who were more understanding, like more neurotypical people who are more understanding. Because people are always surprised my husband is not autistic. He’s not really neurotypical, but he’s not autistic.
And he was like, the first person I met who just was really kind to me about the way that my brain works. And not the last person, but one of the first people. And yeah, it really did change how I thought about myself. And I know it was important to me, especially after finding out that I was autistic, for my daughter to always know that she was autistic and to always be proud of it. And to know that, you know, that maybe you need to take a break sometimes, that’s not a bad thing. Like, because that was the thing when I was growing up, is that I wasn’t — I was told that I was very shy. But it wasn’t so much that I was shy, I just needed to be away from people for a lot of the time because I would get overwhelmed easily. So, yeah, I wanted my daughter to know that the way her brain works is not bad. It’s just different from some people’s experience. And that she could be proud of who she was.
Meg:
I wish therapists would sort of bookmark this section of this interview to share with parents when the parents say, “Please don’t tell my child they’re autistic.” Actually, usually they say, “Please don’t tell my child they have autism.” And they have all of their own reasons. And we just hear over and over and over from autistic folks how learning you’re autistic is the catalyst for self-acceptance, and not knowing you’re autistic doesn’t do anything good. So, I appreciate you sharing that from your story. And it’s also a really touching story that you were able to sort of be seen or be in your relationship with your mom differently after writing your chapter. And it’s a powerful chapter. Just the title by itself reframes how, unfortunately, people tend to approach autistic people as people who need fixing. Again, your title is ‘Change the World, Not Your Child’. And that situates the challenge as being asking autistic people to exist in a world setup for neurotypicals, and even barely set up for neurotypicals, right. Like, this world barely works for anybody, but especially doesn’t work for neurodivergent folks. If you don’t mind, I’m going to quote you back to you, and ask you to just expand on some of these ideas. So, you say, “You can give your child the tools to be a strong self-advocate, you can give your child an example of a true ally by changing the conversation about autism and disability in your own lives.” Can you speak to that a little bit?
Lei Wiley-Mydske:
So, when I say like, “You can give your child the tools,” a big part of that is listening to No’s when someone says, “No.” And that was like, really challenging for me. My daughter and I are both autistic. And we have a little bit of conflicting access needs from time to time. And sometimes it will be hard for me to hear ‘No’. But I had to listen to it. And I apologize to my daughter when she said, “No,” when I didn’t listen, because it’s so important for her to, like, not, basically to not be gaslit about her own experiences. So, that’s a big thing. You have to really listen to the ‘No’ and I don’t know who said it, I’ve read it a bunch of times, but like, “‘No’ is the first step to self-advocacy.” And it really is. Like, you have to listen to that. So, that was the thing that I grew a lot as I parented my daughter. It was a very — I guess ‘strong-willed’ was what people would say, but so am I. So, it’s just listening to your kid, and also being kinda on their team instead of like, against them. And when my daughter said, “No,” I, like, to other people, I would have to be like, “No, you know, this is what she means. You have to leave her alone.” So, yeah. And I really tried to, like — you know, make my daughter’s 18 now, and I hope she knows that I’m on her team, and that I’m gonna back her up. And that was just like, always really important to me.
And I think the part about being a true ally is changing the conversation. Because I never wanted her to feel ashamed of who she was about being disabled or about being autistic. And a lot of people will say that autism isn’t really a disability, but it is. Like, it is. And I feel like the way we talk about disability, like it’s something bad, that’s, I was like, you know, be proud to be disabled. And don’t worry about what other people think about disability because we know we have strong disabled role models. And I had a lot of role models for my daughter who were like my friends in advocacy who have been doing it longer than I have. One of the first people that I really, like, my daughter looked up to is Kassiane Asasumasu who writes ‘Radical Neurodivergence Speaking’. And we’ve been lucky to meet Kassiane on it a few times. And just, Kassiane writes things that are hard to hear, often, from people who are not really familiar with like, autistic people speaking up for themselves, basically. But I loved it. Like, my daughter had this like model of like a strong self-advocate and someone who knew what they deserved in the world. And it was like, they deserve everything.
Meg:
Oh, gosh, I love this. And we can model this in our therapy sessions, too, going back to the first thing you said about teaching. Self-advocacy doesn’t start with, “Okay, tell me what you want. You can say, ‘I want (fill in the blank).'” That’s a little bit what, I would say, in traditional therapy sessions the sort of unthoughtful process of teaching self-advocacy has often looked like historically. And we can just generally do better than that. But I love this reminder that it starts with what we’re modelling. You said, “No, you don’t want that.” I hear you, and we’re not going to do that. Starting with teaching kids that what they want and what they need is okay and matters by how we interact with them. And we can model that for kids and for families in our sessions. And then, you talked about connecting autistic kids with autistic role models of self-advocacy. Here’s another thing that we can also do, we can watch those videos together in sessions or recommend them to families; we can read those books together. I love that. Okay, I’m gonna give you another quote. You say, “Redefine normal. Recognize that normal is subjective. Stimming, flapping, perseverance, and accommodating sensory preferences are not reasons to apologize.” Can you talk about what that can look like, or what that looks like in your life or your daughter’s life?
Lei Wiley-Mydske:
Yeah, so I have a bad habit of apologizing from how I, you know, grew up. And a lot of people can probably relate to this, but I apologize a lot for things that are not even my fault. And I did not want my daughter to grow up like that. So, when she does things, like, she doesn’t do a lot of outward statements, but she does — when she was little, she would have verbal stims. And I would just be like, “Don’t apologize for that. That’s just like, you know, you have to do that, you have to get it out of your system.” And, like, when we would go to events, even, we would leave early. And because if it got overwhelming, and we don’t apologize for that. That’s just, you know, it’s just what — we want to participate and this is the way that we are able to participate. And if you don’t like it, then like, that’s just too bad, I guess. But so, I just feel like having like — and I don’t like to say ‘giving accommodations’ because they’re not — you don’t give people accommodations, that’s their right. But just like, not apologizing for what you need and for how that you can participate in things. Just like, I think that’s kind of what I meant by that. And that’s how we do it in our life. Like, I don’t know. My daughter was raised so differently from me. So, I really tried to think about the things that didn’t work for me and do the opposite of that.
Meg:
I love this. I mean, it’s hard, I think, especially for people who are assigned female at birth to learn to accept your needs, even as neurotypicals, right? If we’re gonna model this for our clients, for our students, for our kids, that’s sort of an exciting challenge for us as well because they’re watching. Or even to say, “Oh, I’m sorry, I have to run to the bathroom real quick.” You know what, I shouldn’t have apologized for that. It’s okay that I need to do that. Let’s make a plan, I’ll be right back, right, that we can model our own process around unlearning over-apologizing and teach something different to autistic kids, that their needs are okay, and are valid, and are not something to apologize for.
Lei Wiley-Mydske:
Yeah. I think, also, another thing I did that I learned also is that stimming is not something that just autistic people do either. Everyone does it. And I like to point that out to people when they have like a problem with someone who stims. Maybe they don’t understand. And I said, if you’re like, like playing with your hair, or like, you know, clenching your teeth, there’s things that people do all the time, that don’t get pathologized because they’re not autistic, but we all stim. And like, even at our, the shop that we own, we have like a little basket of fidget toys for clients. And it has a little narwhal that says ‘Everybody stims’. If you feel overwhelmed and you need help, you can like, borrow one of our fidgets while you’re — cause it’s a tattoo shop, people are gonna, like, people are like, a little bit anxious sometimes. So, that’s worked for so many people, not just autistic people who come to our shop.
Meg:
I love that. I want to narwhal that says ‘Everybody stims’. That’s so cute. All right, so most of the people listening to this podcast are therapists working with autistic kids and their families, or teachers in a professional capacity. What would you hope that they take away from your work or from our conversation today?
Lei Wiley-Mydske:
I think that, like, I think self-advocacy is so important. And like, no one teaches you, though. It is something that sometimes needs to be taught to people and modelled. And I feel like we really need to, not just kids with disabilities or kids who are autistic, but every kid needs to learn self-advocacy skills. And I think that, like, that’s something that therapists and professionals should look into, like how to teach that and how to respect the ‘No’ when that happens is such a big part of self-advocacy.
Meg:
Thank you so much. And we do have a couple of podcasts episodes in the back log from, I think, even a couple years ago on self-advocacy, specifically, that folks can go back to. I love this nuance that you bring to that conversation. Tell us what you’re working on now and where we can find you and all of your resources online.
Lei Wiley-Mydske:
You can find the Narwhals at my library’s website, which is just neurodiversitylibrary.org. And a lot of the stuff that I’m working on now, I also work for Autistic Women and Non-Binary Network. And my daughter and I are really excited because we are working together to create a resource for the AWN website for autistic trans kids and also autistic trans youth. And that’s really fun to be able to work with my daughter. And like, she could practice her self-advocacy skills by telling me what to do, because it’s really, I’m supporting her. And she’s like, directing where we’re going with this resource. So, I’m really excited about that. And hopefully, it’ll be out this summer, on the AWN website, which is awnnetwork.org. And a lot of stuff I’m doing is just stuff in my local community. So, and I don’t always, I’m not as great at advertising that as I probably should be, but yeah, if you will, like a lot of stuff at our Community Resource Centre, and in my tattoo shop where our library is located. And just every day that we’re open, if anyone wants to come in and borrow books, or just talk, or get resources. And I’m also available for appointments for local people, because I can only travel so far. So, and anybody can contact me through the website at neurodiversitylibrary.org. And if you want to meet somewhere, I can bring books, I can bring resources, or if you just want to talk about autism, or inclusion, or anything like that, I’m totally up for that. So, it’s a really fun part of what I do. Even though I’m not like a super social person, it’s always really fun to info dump about all the stuff in the library.
Meg:
And where is local for you, Lei?
Lei Wiley-Mydske:
Stanwood, in Camano Island, Washington.
Meg:
I kind of wish I was there. That sounds lovely.
Lei Wiley-Mydske:
It’s really beautiful. We’re about an hour north of Seattle. And it’s just a beautiful place to live. I really like it.
Meg:
We will link to all of your resources in the show notes and keep our eyes out for what you have coming in the future and share those things as well. Thank you so much for all of your work and for your time today.
Lei Wiley-Mydske:
Oh, thank you so much for inviting me.
[Ending music]
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.
