Episode 26: Amplifying Autistic Voices: Lauren Melissa Ellzey on writing, Autistic representation, and self-advocacy

Episode 26 Show Notes

Author and Activist, Lauren Melissa, shares a powerful story of resilience and creativity. Diagnosed with autism in her twenties, Lauren Melissa turned the challenges of the COVID-19 pandemic into an opportunity, hand-writing a novel that was later accepted by Bold Strokes Books.

Based in New York City, she passionately advocates for the representation of queer, BIPOC, and disabled individuals in fiction, bringing to life diverse, multiracial, neurodivergent, and queer characters. Her journey is a powerful testament to the strength found at the intersections of identity and creativity.

Connect with Lauren Melissa Ellzey on LinkedIn and her website.

Transcript

Lily Newton:

Hey, listeners. Welcome back to another episode of everything you know about disability is wrong. Today on the podcast, we are so excited to be joined by Lauren Melissa Ellzey, also known across social media as Audie Nell. She's an autistic self advocate, author, educator, and activist. Through writing and presenting, she highlights the inequitable systems that oppress queer, BIPOC, and disabled folks. Her young adult novels, Boy at the Window, Gimmicks and Glamour, and The Streamline emphasize the importance of belonging for queer, neurodivergent youth of color.

Erin Hawley:

And her work has crossed paths with neuroplastic, New York University, Reframing Autism, Purple Media, Ablezine, Think Inclusive, the United Nations, and more. She holds an MS in library and information science and resides in New York City. Welcome to the show.

Lily Newton:

We are so excited to have you. Thanks for being on, Lauren Melissa.

Lauren Melissa Ellzey:

So I'm really happy to be here.

Lily Newton:

That was an impressive bio. We were excited to get to read it. I love the long list. Before we get into the questions, let's go ahead and do our audio descriptions. This is Lily speaking. I am a white passing mixed race Indian woman with green eyes. My hair is pulled back today, so you can see a small line of my pink highlight, but not much. And I'm wearing a black turtleneck and a gold necklace that I will fidget with throughout the episode.

Lily Newton:

Erin, you wanna go ahead and give yours?

Erin Hawley:

Yep. I'm Erin. I am a white Latina with red hair, blue eyes, and I have a red shirt on and then in my bedroom sitting in my wheelchair. And I'll pass it to Lauren.

Lauren Melissa Ellzey:

Hi. I'm Lauren Melissa. I am a black multiracial woman with big curly hair and brown eyes. I'm wearing a light blue blouse with a sailor collar, and I am sitting in my room. And behind me is, like, a dresser and various pictures.

Lily Newton:

Awesome. Well, let's get into it.

Erin Hawley:

So my podcast is everything you know about disability is wrong. And the first question that we ask everybody is what do people get wrong about you?

Lauren Melissa Ellzey:

Honestly, I think a lot of people get a lot of things wrong about me due to the multiple intersections of my identities. But in talking about disability, I think a big thing that a lot of people get wrong about me is that they would think that I am not disabled. So I think a lot of folks, when they talk to me or they interact with me, they don't recognize that I have multiple non apparent disabilities until, you know, until they notice them. But because of the assumptions that they make about me, when they do notice my various disabilities, be it, my physical disabilities or my autism, they attribute them to really harsh judgments and assumptions. And so I would say that's a big thing that people get wrong about me. I mean, I've heard everything from she is a snob to she is a smart aleck. She's, you know, just, for lack of a better word, like an airhead. So, like, it's like, okay. Which one are we gonna land on here? Or, you know, maybe that I'm lazy or that I, just wanna stay home all the time to she's a party girl. Like, I've heard everything, and it really just depends on people's judgments and what they see about me, but they'd never think that maybe I'm at home because I my body is needing so much rest or my brain, or maybe I'm not being a smart aleck. Maybe I'm just literally saying what I'm saying and they're reading into it, and that I just might communicate differently through, my autistic neurotype. So I would say that's definitely something people get wrong about me a lot.

Lily Newton:

I deeply relate, and I think you just articulated a lot of what I've felt for a long time in in words that I have not been able to find before. But, yeah, I think that's, I'm sorry you have to deal with those assumptions because I know that the the weight of that gets intense, and it feels like sometimes that you're the the assumptions seem to contradict each other. Like, I often get that I care too much and that I don't care at all about things. And I

Lauren Melissa Ellzey:

Oh, yes. That's familiar.

Lily Newton:

Like, what what do you mean? Like, and it's just it's interesting. It's interesting the the I like that you said that people tend to just go with really harsh judgment, and I've never really thought about that. Like, people don't have to it just because they don't understand differences doesn't mean they have to, like, immediately look for things that are are wrong. Like, that's tough. But, yeah, that makes a lot of sense. We I think that the through line of the answer to that question from our guests often centers around assumption just because of how little we talk about disability open in this world. And so, people make a lot of assumptions. So thank you for sharing that with us. Yeah. Go ahead.

Lauren Melissa Ellzey:

I was gonna say, I think, also, it depends on what sphere I'm in. The offline world, makes different assumptions of me, I'd say, than the online world since I am very active on social media, and I spend a lot of time in online communities. So while very rarely in the offline world do I get people accusing me of faking or lying about my disabilities, I do experience that more regularly in the online world. It's quite fascinating.

Lily Newton:

Maybe because that's just like a kind of awful thing to say to someone, so maybe people feel more comfortable being awful when they're behind the keyboard.

Lauren Melissa Ellzey:

I also think it might have to do with the fact that they only see a very small snippet of me online, like, through photos and short video clips. So it's really hard for them to really, like, actually know me at all.

Lily Newton:

That makes total sense. That's a good way to put it. I feel like, Erin, you've talked about that before, the difference between, like, communities online and reception of people.

Erin Hawley:

Yeah. I get I get harassed, not a lot, but definitely more on the Internet than in person. In person, I just get ignored, which is different. But, honestly, I never get ignored when harassed. But, yeah, online spaces are definitely different and more toxic, I think, because everyone's not afraid to hold back and just say whatever.

Lauren Melissa Ellzey:

I agree. It can be more I feel like it's interesting. Like, in the offline world, things are, like, more the same in that level, like like you said, people ignoring you or people just, like, making assumptions about me based on my speech patterns. But then in the online world, there's, like, this massive pendulum of extreme toxicity and extreme acceptance, and you never know what you're gonna log in to.

Lily Newton:

Yeah. As as you're saying that, Erin, I was thinking the exact same thing of what you just said, Lauren Melissa, that, like, it's it stinks that there's such little hubs of toxicity because there really also are on the Internet just like beautiful hubs of joy and understanding and, like, finally finding your people. It's it's definitely tough, and I respect people who create content on the Internet and navigate through that. So speaking of, let's let's move into the section of the interview about all the cool stuff that you do.

Erin Hawley:

Yeah. Totally. So, as a writer myself, I'm really interested to learn about how did you get involved in writing, and who are some influential, authors that inspired you?

Lauren Melissa Ellzey:

Yeah. So I actually started writing as stories as soon as I could write. So that was starting in, like, the 1st grade and 2nd grade when I learned how to not just, like, write, but, like, string things together. And so I remember my first stories were, like, about a mermaid, and then also my next story was, like, about a princess. It was a co written story between me and my sister. It was about a princess who was kidnapped by a vampire, but her town was on fire, so she had to make sure she escaped. But already at that point, you're gonna hear the fantastical elements, mermaids, vampires. And a huge part of my writing in general and what inspires me to write is actually my special interests. So my autistic special interests are, Japanese visual k rock, very specific, very awesome, if you ever have time to look it up, and, dark fairy worlds. And so even from that age, I was showing a lot of that interest in fairy worlds and just always wanting to write about fairies. And, and then as I continue to grow, I was listening to a lot of that specific kind of rock music. And a even just like a single scene in a music video would cause me to wanna write an entire short story. So it was the space writing is this space where I can, for lack of a better term, infodump about my special interest in a way that nobody ever says, why are you still talking about that? And so I kinda, like, tricked everyone into listening to me talk about my special interest by having them read my newest chapter. And so that was very helpful for me. It was a great conduit of expression from a very young age and into middle school, high school, college, and now into today. But, you know, there were definitely authors who inspired me along the way and continue to inspire me. Holly Black is one of my favorite authors of all time. She writes about dark fairy worlds. I've been reading her stuff since, like, I don't know, since Tithe first came out, that was when I started reading Holly Black. And then it's really awesome to see how many people are reading her things now. I'm like, yeah. Like, talk to me about it because this is my special interest. And then, also, I was very inspired by Francesca Lia Block and her lyrical, magical realism prose style of writing novels. It's very, very influential to my writing style and the way that I try to use imagery to evoke not just the visual, but also the emotional. And the 3rd author that truly inspires me today is Banana Yoshimoto, who also writes magical realism, and she writes novelettes. And I'm just always shocked by how concise and precise she can be in naming the human experience through magical realism and by just exploring the mundane.

Erin Hawley:

I'm, like, trying not to, like, use my mind right now because I love all those authors. I can't remember. I also know. What is your favorite Holly Black book?

Lauren Melissa Ellzey:

My favorite Holly Black book? I would say it's probably either Valiant or, I really did love The Cruel Prince. Like, I'm not gonna lie. Like, I'm the biggest fangirl of Cardan ever.

Erin Hawley:

Yes. I love that series. I did it for the first time, last year, and I love it. It's so good.

Lauren Melissa Ellzey:

Yeah. It's amazing.

Lily Newton:

Yeah. As soon as you started talking, I was like, oh, Erin's gonna be psyched. That's amazing. That was a phenomenal answer, and I love I just love the way you described that, the, like, giving yourself a space to info dump, because, like, one of my favorite things about autistic creatives, because I'm I'm an autistic creative, so I feel like I've we find each other. And I have a lot of autistic creative friends, and it's always fun to see the way, like, we'll kind of get to know each other and be like, this is how my brain works. This is the dots my brain connects. And then it's like, oh, well, that makes sense that you do this thing now. And, like, my very best friend had the very stereotypical she was obsessed with trains growing up. I always say she's got lucky. She got, like, the most famous autistic special interest. But now she works in public transit and, like, writes for a mass transit magazine, and it's so cool to see the way that she just dove into that special interest. And, I write comedy because my brain is always, like, trying to make sense of human behavior. And to neurotypical people think that's kinda funny. So it just kind of, like, became comedy. And but I never thought of it as a space where you can freely info dump. I love that. And I definitely do that in my comedy when there's something I, like, can't stop talking about. I'll be like, well, I'll just write a bit about it because then I can say the same thing many times. That's so cool. And I'm I'm grateful that you turned your special interest into, like, great books. That's so cool, and I feel like there's some young autistic child who's really into, like, fairies and stuff that will now have your books to look to. It's exciting, and I think that there's something cool about autistic people creating media that then young autistic people find. I think it's like a beautiful cycle.

Lauren Melissa Ellzey:

Okay. I think one of my hopes is that in the young adult fiction that I write, it can either be a mirror for those who share the identities or a window for those who maybe have misconceptions or misunderstandings about neurodivergent folks, about queer folks, about, multiracial protagonists. I usually have multiracial protagonists. And so it's just something that I try to put out there to be a mirror or a window.

Lily Newton:

That's so important. And I love that you bring the multiracial element into it as well. And, like, you I know you have many intersecting identities, but coming from also a multiracial home, there's something in the autistic experience of, like, masking that then is so similar to the experience of code switching between, like, different family members. And I'm just, like, wishing I could have grown up with characters that could have, like, helped me understand that. I'm so excited that some of your readers will get to have that experience. That's just really cool.

Erin Hawley:

Are there any characters that you grew up with that you identified with or related to as a child? And what you already kind of talked about this, but why do you think it's important of having characters that, young people can relate to in fiction?

Lauren Melissa Ellzey:

So I actually didn't really grow up with very many characters in fiction or games or television that I identified with in terms of, like, being a autistic, queer, multiracial young person at the time. And I think that's one of the reasons why I so intently write about those, intersections because I really just in terms of any of those things, a lot of the time, the publishing world will say, oh, you can write a multiracial character. Oh, you can write a queer character. Oh, you can write an autistic character. But if you start to combine, they're like, oh, it's too messy. Oh, it's too niche. And so I really want to make sure that I write about that niche, even if it doesn't reach as many, like, readers as possible because there are people with those identities. I think it's very important to have characters that we relate to, just because I think a lot of people think it's important because it's like, oh, when I read the book, then I'll see me. But it's not just about seeing me. A lot of time when people read a book, they don't wanna pick up a book about themselves exactly. They wanna pick up a book so they don't have to deal with their life, and escape in a healthy fashion. But I think when the protagonist shares those identities, we can escape into their world through them much more easily. So maybe a reader of my most recent novel Streamline doesn't play video games, doesn't stream online, but maybe because they are autistic or multiracial or queer, they can see themselves more readily in the protagonist and then access that fantasy world more easily. So I think that that's actually a really important reason. It's so that we can have that healthy escape that when maybe the going gets tough. I was the kid who was reading books in my closet, so nobody would know that I was awake. I would read by candlelight at, like, 3 AM, because I couldn't sleep. I was so stressed out. I was sensory overloaded from school. I was experiencing so many social struggles and experiencing bullying because accepting differences wasn't really appreciated or promoted in this school. And so I I found it very hard to sleep as a kid. I would stay up. I I couldn't unwind, and reading was such a wonderful way for me to escape and also to grow in empathy towards other people. So I think that having access to diverse characters can only increase people's capacity to have empathy for other people and to learn to embrace differences. Now I will say there were lots of characters that I imitated as a kid, and I kind of, like, used them as personalities to be like a mask to try to camouflage my autistic traits. And, some of them were from video games. I am a gamer just like Loon and Streamline, but I actually would, copy, for example, Riku from Final Fantasy 10 to the point that I would always say, like, she had this one line where she would go 100%, and I would just constantly mimic that all the time. People would be like, are you ready? 100%. I'm like, that was like my catchphrase at the time. So even if the character doesn't fully encompass who I am, I think I identified with Riku because she was different from other people, and she was ostracized because of the way that she was just born. And I could connect with that immediately.

Lily Newton:

Yeah. Absolutely. That scripting and, like, using a script is so relatable. I did very similar things. And sometimes sometimes when you just, like, are a child trying to, fit into a neurotypical world and then you quote, like, a odd movie, it just makes things worse. But I didn't know that as a kid, and I love it.

Lauren Melissa Ellzey:

Saying everybody was into the 100%. They were

Lily Newton:

Well, that's a good one, though. I yeah. I'd I'm I definitely had some, like, Disney Channel that was deep in my brain and would just come out. I'd just be quoting like Hannah Montana throughout the day. So speaking of Streamline, you this is your first openly autistic protagonist. What made you decide to make that canon?

Lauren Melissa Ellzey:

Well, honestly, each of my protagonists speak to me in, like, a different way, and I wanna emphasize different parts of neurodiversity and neurodivergence through these characters. And I just knew right away that Lun was not only autistic, but that she already knew and that she was combating stigma. And that was just an essential part of her character, that she was a gamer, that she lived so vividly in the online world, and that she just was most comfortable in her bedroom. And for some reason, this really bothers people. And that is something that she is having to fight for. And so I knew that right away about Loon and I was excited to write my first openly autistic protagonist. I think I felt prepared because sometimes I had concerns that if I wrote an openly autistic protagonist that one, everyone would assume that it was me and, 2, that folks would become maybe upset and and say, oh, this isn't representative of all autistics or my experience of autism. But I think I just came to a place where, I could write a story where Loon could express herself very well in the first person to the point that no one would think, oh, this is what all autistics are like. I think she's aware of that herself in the way that she describes her autistic traits. So I don't think I was prepared to write like that as responsibly as that, before streamline. But a lot of people ask me if the protagonists of Boy at the Window or Givings and Glamour are autistic. Daniel and Boy at the Window has depersonalization, derealization differences, and maladaptive daydreaming is what they call it. And I don't really know if he's autistic or not, and I don't think that that's part of his journey and that story. I guess it's possible, but I never really thought of it that way. But it is great that, so many autistic people identified with him. And then Ashley from gimmicks and glamour has sensory processing differences, but so that is very much co occurring with autism. So perhaps she's autistic, but really I think she just wants to go hang out with fairies.

Lily Newton:

The difference between what I was assuming as, like, not a writer of, like, oh, yeah. Because you as the writer know that your character is autistic, and the way you phrased it of the differences that she knows, that really clicked something into place for me. And I was like, oh, that that makes total sense. And it now I'm like, I love that you have a named autistic character and ones that just maybe they are, maybe they aren't, but diagnosis isn't something they've pursued because that's, like, such a big part of the autistic experience is that, like, deciding whether you find out or not. And and some people don't even get to decide because we just don't know about things. And that's just yeah. I really like the way you phrase that because as a also late diagnosed person, there is a difference between like, my autistic traits were always there, but the difference was whether or not I knew that it was because I was autistic or not. And, that's that's just a great you should be a writer. You're good at saying you're good at saying things.

Lauren Melissa Ellzey:

I'll try. I'll keep that in mind.

Lily Newton:

Great. Great. Great.

Erin Hawley:

I know a lot of people listening to this might also want to be a writer too. So can you give us, our audience some advice if you want to get published and get involved in publishing?

Lauren Melissa Ellzey:

Yeah. Definitely. I didn't do publishing in the traditional way. I am published through an independent publisher, which I think a lot of folks don't realize is an option. I think they have to use one of, like, the big publishers, or they have to self publish. Like, those are the only two options. But there is this whole other avenue of independent publishers where you still, you know, have access to, some resources, like some marketing resources, editors, and, the like, you know, different pieces like that. So when I actually wrote Wait the Window, which was my debut novel, I had no plans of publishing. I had wanted to be published when I was younger, like, especially when I was an undergrad. My major in undergrad was creative writing fiction. And so I definitely had huge plans to be a writer, but then or published author. I think you can be a writer without being a published author. And then I kinda, like, got discouraged. I think I was overwhelmed by, you know, the big process, buying an agent, this and that. And I had gotten a couple short stories published in various small magazines or online journals, but I got, you know, really wrapped up in my career. I was going through a lot of personal growth. I was diagnosed with autism. And then during the shutdown that happened due to COVID 19, I stayed home a lot, and I was so tired of being on my computer all day. And I just felt like I was always on my phone or I was on my computer. And so I actually thought, why don't I write the story that's in my head, but I'll hand write it. And so then I can get some time away from my screen. And the person I was living with during that time, I would write a chapter and then read her a chapter every day out loud. And so she started being like, you better write a chapter today. You better write a chapter today because it was, like, her, like, escape too. So in a little bit over a month, I wrote the entire novel, and I was like, that was fun. And then, the friend that I had read it to was like, no. You need to get this published. And I was like, no. It's fine. She's like, no. And, like, she got my foot down about it. And I was like, okay. Well, I'll do my research. I'll look for one independent publisher that I think is truly the best fit. So for those seeking publication, this is my this is my path. Maybe this will be yours. I was like, I'm gonna find 1. I'm gonna do my research, look at all of them. So I looked for an LGBTQ specific publishing house, and I found Bold Stearns Books. And at that time, Bold Stearns Books was naming, which is this is very common, the lack of diversity that they had in their authors because most authors are not people of color. Most published authors are not people of color because BIPOC books are not getting their work published. It's it's it's discrimination in a sense. So Bold Strokes Books was naming that there was maybe this unconscious bias in their publishing practices. And so at that time, they said, if you submit a manuscript and you are a person of color and we would publish it after reading it, you're guaranteed to get in. So I was like, okay. Well, I'm gonna, like, give this a shot, and I'll know if this is good at all by what happens here. So I sent it in, and, I was like, okay. Goodbye. Wipe my hands with that, and then, well, lo and behold, they responded. So I would say definitely seek out a publishing house that really jives with, who you are as a writer and look for that connection and send a manuscript into them. I definitely recommend finishing a manuscript before seeking an agent, before sending in to a publishing house, not just for them, but also for you. Like, it's easy to not finish. So challenge yourself to finish first the novel and then send them.

Erin Hawley:

That is pretty good advice. I do have the issue of, like, never commission. But this, I'm working on a manuscript right now for a novel, and I do have that fear of, like, once I finish it, I will finish it. Once I do, I'm like, now what? So that's a great advice. Yeah.

Lily Newton:

Great advice, and I love the, like, fun accidental accountability buddy that built in there with reading it to your roommate. So, Erin, maybe that's like a we need to put a weekly, team meeting on our calendar where you you read me your latest updates from your manuscript. That'd be really fun. Yeah. That's that's such a good idea. And, honestly, like, that was all phenomenal advice, and I hope that listeners, you mind, like, that piece of advice from it too of that, like, getting someone else involved who then, like, pushes you to do something with it is, like, a really beautiful thing. And I think that's just so cool, and I'm glad you pursued that. Also, I didn't real I was one of those people that thought that it was self publishing or, like, the major houses. I didn't realize there were lots of independent places. What an interesting fact. Which is cool also because I feel like for people who are interested in going into publishing, like, sometimes that feels like a kind of gatekept industry because it's like, how do you get into these major houses without knowing people? But that's good to know that there's independent spaces to find. And I I would hypothesize that it's in those independent spaces that if you are of any kind of marginalized identity, you'll be able to find more, like, ownership in yourself, I guess. I don't know if ownership's the right word, but, like, I sometimes I feel like those larger mega publishing houses are the ones that are pushing those narratives of, like, you can be one identity or the other, but we need to sell to a very wide audience, so one or the other, whereas the independent might be where you can explore other things that wouldn't necessarily fly. I don't know if that's true though because I've never been in publishing.

Lauren Melissa Ellzey:

I can't speak for every independent publishing house and whether or not that's the case, but I will say that for what I'm writing, which is just so so niche, in a sense, like I mentioned earlier, I think it can be easier, especially if you're a new author writing niche fiction, to see if you can find an independent publishing house that engages in that niche, and then you might have found your place.

Lily Newton:

I'm glad you said the word niche again because I wanted to comment on that. What a wild thing to be told. Your identity is just very niche. Like, so wild. When I was acting a few years ago, that was a thing I would get told by, like, casting people would be like, well, you kinda look pretty white, but you also don't look white. It's a little niche to cast. We're not exactly sure where to put you. And I was like, well, sorry. Like, that's just who I am. It's it's always kind of mind boggling to me when people feel so comfortable, like, calling someone's identity something like that. Like, it's it's like, oh, okay. So oh, I don't wanna go to my next question yet, Erin. Actually, I don't wanna skip over yours.

Erin Hawley:

That's fine. So you you do a lot of presentations on inequity and how, queer, BIPOC, disabled people, experience oppression. Can you share with us how you got involved in that and what that was like? So I think the way

Lauren Melissa Ellzey:

I got involved in that was through my online presence on Instagram, primarily. Originally, my Instagram, when I started it up in 2016, it was just supposed to be a place for me to connect in community with other autistic folks because I didn't really have a lot of community at that time. And it was also a place for me to sublimate some resist resentment that I had towards not receiving a diagnosis until my early twenties. Actually, being diagnosed in my early twenties isn't really that late for a lot of autistic women because most autistic women aren't diagnosed until after the age of 18. So I think it's 80% aren't diagnosed at this time until after the age of 18. And so I was late for autistic people, but not necessarily that late for autistic women. But I still felt very, like, frustrated at that time. One of the things that I was told was that I had developed, very a large number of coping strategies, and some of them were helpful and some of them were only helpful in terms of making it so that other people might not recognize my struggles as quickly, but they're actually harmful for me. And so I decided in order to sublimate this resentment that I had, I would create an Instagram where I would share the coping strategies that I had developed that I thought were more helpful. And maybe I thought, maybe there could be some autistic folks out there looking for ideas, and they've only got the coping strategies that are hurting them or coping strategies that other people are forcing on them that aren't really helping them cope. I was like, maybe this little tiny Instagram could help someone, and I thought, why not give it a shot? Fast forward, it's completely, like, changed and transformed into a much bigger platform that I never imagined. And through that platform, I've talked about various elements of my identity as it intersects with autism, be it being queer or being multi black and multiracial. And because of that, I have had various organizations reach out to me and ask, oh, hey. Would you wanna be a speaker at this conference, or would you want to work with us behind the scenes as a consultant? And I would actually say that my intersections of identity have been very advantageous in terms of how much I can support specific organizations because if you just have an autistic person who's white and a boy, you might and straight, then you might miss a lot of experiences that, happen when you have compounding marginalization. So a lot of my presentations have covered a variety of topics. I'll say the the most common topic that I've ever talked about is definitely around sensory sensory overstimulation, stimming, embracing stimming, understanding one sensory needs. But I do have various events where I've gone and talked about intersectionality and talked about largely about, race and autism or queerness and autism. And that's been really great because I usually have folks in the audience, be it the virtual audience or in person audience, who have come up to me afterwards and said, that's the first time I've actually ever met or spoken to another autistic person who is also inter identity here, and that that was very helpful for them because that's their identity. And so, I think it is really important just to go out and talk to folks, and I think there is still autism awareness work that we need to do in order to achieve autism acceptance hopefully someday.

Lily Newton:

I totally agree with that last statement on the you know, I think it's really great that in a lot of advocacy movements, we are kind of moving away from awareness and into, like, more, I don't know, acceptance territory. But, like, what people are aware of when it comes to being autistic is so, like, one subtype of autistic people. So I do think that that's really important, and I appreciate you saying that for autistic acceptance month in April for Easterseals. I was really grateful because they really let me take the lead on, like, what content do you want us to help you make so that you can, you know, help our audiences learn more? And I was like, well, I would love to get to autistic acceptance, but we don't even have autistic understanding right now. People don't know what traits look like. So we, made a series about understanding what autistic traits are like and interviewed lots of different autistic people from different backgrounds. And it was really enlightening to see the, the difference between what an Indian man's stimming was like versus a black woman versus a white man versus like, these things do affect us, and I think that, yeah, we need more awareness of that, especially because you brought up the late diagnosis. I'm very similar, and I also dealt with the had a lot of resentment of feeling like I was so, like, late diagnosed. But now I know more, and I'm like, well, early twenties is unfortunately actually quite early. And, but it does feel like he like, just it feels so late, and I definitely had a lot of those unhealthy and healthy is a moralistic word, but, you know, maybe not as helpful, coping strategies. Other than coping strategies, were there any other ways that not really understanding your brain until your early twenties kind of left a lasting impact on you. And, I also wonder if you have anything to say to women out there who might share some of your identities, who might be thinking they're autistic, but don't feel like they fit the mold of what they've stereotypically heard about autism?

Lauren Melissa Ellzey:

Definitely. So I would say one of the many lasting impacts of not learning about my autistic identity and specificity until my early twenties was the way I it really impacted the way that I see myself in this I think I've got a bit better about this, but saw see myself in relation to other people. I did actually suspect that I am autistic when I was 13 years old, so I had some idea about it pretty early on, thanks to the good old Internet. But I had a I had this kind of, like, understanding of the way I was situated in the world and that all of the social difficulties I encountered, the social challenges, the bullying that I experienced, the, loss of friends, and, like, a constant revolving revolving what is that called? Like, a belt? That was a conveyor belt. Conveyor belt. Yeah. I thought that it was always my fault and that I was inherently broken. And so the way that that impacted me in adulthood and still impacts me, I have to, like, talk myself down a lot of the time, is I have a tendency to blame myself for everything. So that can be big as in, like, someone's yelling at me. I will I I would think it's my fault I need to change, or someone looks tired. I would assume it's my fault. I'm doing I'm I'm boring them. Because I was always so socially confused, and people were somehow always telling me it was my fault when something went wrong. I decided my brain, like, decided to just assume the absolute worst about everything that I encountered that was confusing. And that that worst case scenario was that it was my fault, and I needed to change or fix it change myself or fix it. And so I would say that was one of the big lasting impacts, of this late diagnosis, of this not knowing myself. But, you know, I'm gonna be honest, I don't know if that's actually just an issue that late diagnosed folks experience because I do think that, autistic individuals who are diagnosed at an earlier age are still often fed a message whether or not it's stated out right or it's an undercurrent of the therapies and the, quote, unquote, supports and services that they're receiving that it's you. Fix it. And that has a long lasting impact, especially when therapy is focused only on social skills and not on social context. It's really important to explain context and not just say, do this differently, do that differently, but just to explain what's going on in full detail because of you know, many autistic people like detail when we're confused. And I think that that's a a long lasting impact of not a a long lasting impact of attributing all of these challenges to the autistic person, you know, this medical model of disability is that we'll just grow up to blame ourselves, or we'll grow up to completely reject society entirely, which, I mean, hey. Sometimes you gotta do what you gotta do.

Lily Newton:

Yeah.

Lauren Melissa Ellzey:

I know there was a second half to this question, and I can't remember it right now.

Lily Newton:

Well, I have so much I wanna say on that, so we'll get to the second half of it. But, yeah, I think there's a sort of, like, learned codependence that happens with when like, I just started kind of learning about codependence. It's not what I thought it was, but that feeling of like, I always assumed codependence was about, like, being too, like, attached to people with but more codependence in the term of, like, thinking that you are in charge of other people's emotions, and I definitely felt that. Like, I felt growing up that, like, there was something innately wrong with me where I was such a strong presence that if everyone in the room was sad, it had to be because of me. And you're right. I like that you point that out that I think that either way, when we're focusing on social skills, whether you have undiagnosed kids or diagnosed kids, there's it's it's the same kind of experience of, like, this is falling on you and just shoving this, like, innate ability to ask, well, what how's my well-being in this? I think gets I don't I always wonder if that is something that's like is it that that is an autistic trait in itself of the, like, not necessarily reading your own cues, or is that experience of the trauma of constantly being, like, feeling like you are to blame for what's going wrong, which is kind of a chicken or the egg situation. I don't know if we'll we'll ever figure it out, but I think that that's an important point you brought up that, yeah, it it goes both ways for diagnosed and undiagnosed people when we focus on social skills versus context and, like, well-being. You brought up earlier you said that, that you, like, sometimes you just like you just wanna be in your room because it's your favorite spot, but it seems to really bother other people. And I think that until I said Loon, not that. Oh, okay.

Lauren Melissa Ellzey:

There you go. People say I did it. I did the thing. Because I I relate to that. I really I also relate. Hard on that. I do. Of, like but but for so long before I would let myself enjoy that, I would, like, I was forcing myself to go out and be social and do these things even though I didn't like them because I felt like it was I wasn't allowed to enjoy what I like to enjoy because it didn't fit the social model, so it would, like, make other people feel bad. And I just yeah.

Lily Newton:

I think it's I don't know if I have anything to say other than just I I so agree on that. And the second part of the question was, do you have anything to say to undiagnosed women out there who might be thinking they're autistic, but don't feel like they, like, are are are dealing with that question and maybe feel like they don't have the space to, like, explore that identity?

Lauren Melissa Ellzey:

I think that this is probably not going to be the advice people expect, but I would say maybe, like, pause if you are that woman. Pause and turn off social media for a little bit because it's, like, so overstimulating and there's so many different voices and so many different experiences and, like, it's like a never ending pattern and match game. And, like, look for a book written by an autistic woman and see how you feel after reading that book. And I and there's audiobooks too, if that's more accessible. Or just like honestly, when it comes to nonfiction, I'm always gonna I always like reading, like, audiobooks and I like reading print books for fiction. But anyway, I would say read a read a whole book because that puts the entire picture together a lot better than bits and pieces on social media only. Now I'm I literally make content on social media. So I'm not telling you to stop reading social media content, but I would I would suggest reading a whole book or 2 if you are that person because that's what really ground helped me to feel grounded when I finally did decide to pursue an evaluation was it was after reading multiple books about it.

Lily Newton:

I think that's phenomenal advice.

Lauren Melissa Ellzey:

And it's something that the author would say, read a book.

Lily Newton:

That's funny. Speaking of your social media posts, you have a post that really spoke to me about unmasking and the process of unmasking and how it can come with losing some friends. What was your experience like with that, and just do you have any other thoughts on that?

Lauren Melissa Ellzey:

Yes. I have a lot of thoughts about unmasking and losing friends. So this is a common occurrence for autistic folks who are accustomed to changing our personalities, to meet the social expectations around us. And so one way that I tried to cope was kind of by mimicking the people I was talking to, and it wasn't that I would actually, like, change myself. It was that I would become, like, a mimicker and a parent in a way of just being like, I like that too. I am going to be doing that too. Let's do that since you like that. Like, what do you wanna do? What do you wanna do? You know, that kind of thing. And then, I would also try to just say whatever it is I thought other people wanted me to say versus what I actually felt or really wanted for myself. Now when I start to unmask that and start to show more of what I want, what I'm interested in, what I wanna do, my friends weren't accustomed to that, and it's not that those people are bad people because they actually got to know me as a different person. So I like to clarify that. It's not like they're bad they were bad friends. Like, let's take some perspective here. If your friend just, like, turns around as a completely different person on you and they say things differently and they have different interests that you're not used to and they talk about things differently, it's gonna be really jarring. Like, that's gotta be weird. And they're probably like, what happened to my friend that's not my friend anymore? And so I lost some friends, but in a way, I didn't actually lose any friends because the truth was we were never friends. And not in, like, they were a bad person. They were never really my friend, but we were never actually interacting as friends. It was almost like a a puppet show was happening. And I decided to stop playing the show and that's going to then mean that I'm becoming the full protagonist in my life and that protagonist needs to make friends. And some of those people will be the people that I had made friends with before, and they are like, actually, this new you is cool too. And some of them will be like, oh, no. Actually, that's not the kind of person I would normally be friends with. And that's their choice, just like it's my choice to step away from them. And and so that's my perspective on unmasking and losing friends. Now does that hurt still? Of course. Of course, it still hurts. But having perspective that sees it a little bit more holistically and long term, I think can make it easier to make that full decision to step into myself and to find the community that works best for who I truly am.

Lily Newton:

I think that's a really beautiful answer. And

Lauren Melissa Ellzey:

Oh, and one more thing is we might discover that we actually don't want that many friends.

Erin Hawley:

Because that was so nice.

Lily Newton:

See. That's literally what I was gonna add. I yes. In in relating to Lune and wanting to be in her room, I had to realize that I actually didn't didn't, like, love socializing with people that much, and I ended up really pairing back. And for a long time, I felt for a long time, I had a lot of anger towards those friendships that didn't work out and because I felt like, well, they don't like my authentic me. And, you know, it took a couple years to get to that place where you're at now, that feeling of, like, well, they never knew authentic me. That wasn't the person they signed on to be friends with and kind of giving that grace. Well, still, yeah, it still hurts. But that realization and then also the realization of that, like, I would often I had, like, a friend some friend groups, especially when I was in college and really high masking, where I you know, every time I would hang out, I would leave just thinking, like, did I say the right thing? I'm so stressed. I feel like I was weird in there and just feeling terrible. And it took me so long to understand that the way I needed to read that feeling was not that I am a terrible person and that I need to change to get these people to like me, but that it seems like maybe I don't like being around these people, actually, because every time I'm around them, I feel really terrible about myself. And learning that that I think that comes with going back to our conversation about, you know, when you know you're autistic, how that changes things. Like, that feeling of understanding, like, oh, I my discomfort should not be the norm, actually. I can prioritize a life of comfort even if it doesn't look like what I expected. Beautiful answer. I really appreciate everything you've said today. We are over time. I could talk to you forever. I have one one last question, which is autistic meltdowns are often you you've worked in schools a lot, and autistic meltdowns are often seen as temper tantrums. I've seen some you have some amazing content for people. If you wanna learn more about meltdowns, you should follow her, and the way that they're often seen as temper tantrums. I'm wondering what you think teachers of autistic students should know to best support their autistic students who might have meltdowns or other sensory needs that can cause challenges in the classroom?

Lauren Melissa Ellzey:

Yeah. Definitely. So I used to experience meltdowns 2 to 3 times a week, and now I experience them 2 to 3 times a year. And the reason for that is because I actively work on finding out what my, like, triggers, my sensitivities are, my needs sensory wise and socially, and I've stopped thinking about it as meltdown stopping meltdowns, and I've started thinking about it as stopping overstimulation, supporting social confusion, actually looking at what the triggers are and then working towards supporting those triggers from not being triggered and preventing those things or proactively supporting those things. So instead of thinking about meltdowns, meltdowns, meltdowns, meltdowns. Once a meltdown starts, it's not gonna stop, like, unless it turns into a shutdown. That's that's just what has often happened for the majority of autistic folks when we experience meltdowns. So if you have a student who experiences meltdowns, prioritize safety when they're in a meltdown, prioritize the safety of the other students and that student. So that could mean, like, evacuating the other students from the room if that student is unable to leave the room at that time. If the student who's having the meltdown is able to leave, then helping them leave the room. That's the most ideal, but let's not shove a student out of the room. Right? We can actually evacuate the other students.

Lily Newton:

Yeah.

Lauren Melissa Ellzey:

That's also possible. But in truth, it happens before. Like, this the support happens far before the meltdown. I think, I think it's doctor Brenda Smith Miles who created the rage cycle and talks about the rumbling stage. And that rumbling stage and identifying what causes the rumbles is so important. If I'm in a room with fluorescent lighting, I'm more likely to have a meltdown. So are we going to try to stop the meltdowns, or are we gonna change the lighting? If I am in a loud, loud environment and experiencing brand new curriculum, brand new ideas all at the same time, probably they'd have a meltdown. So how about we help the environment be quieter when we're experiencing new curriculum? How about we prime for new challenging tasks instead of thinking about how do we stop the meltdown? And, also, I know this is gonna sound, like, really strange, but, like, if an adult is walking on eggshells around a child, and child means through the teen years in this context, that child knows, and that emotional tension can be a meltdown trigger. So take care of yourself too, educators, and make sure that you're in a place where you can co regulate. Because if you're unable to co regulate, then you and the child are gonna be setting each other off, and that's gonna be fireworks in the bad way. So that's a quick little, like, hey. Like, here's some ideas. But, you know, of course, it's much, much more complicated than that. But I would say stop thinking about the meltdowns as something to stop and start thinking about the triggers as something to support.

Lily Newton:

Well, that was phenomenal advice for my 27 year old self, so I imagine it's gonna be very helpful advice for lots of other people. I think it is thank you for sharing that you went from 2 to 3 meltdowns a week to these a year. That's like a beautiful transformation, and, I really appreciate the way you broke that down, how you got there because I think that it can feel a little hopeless sometimes. And I think that that can come from the blaming the the meltdown as the thing and not the triggers that cause it. This has been such a wonderful interview. Thank you so much for coming on our show and chatting with us. This has been so fun.

Lauren Melissa Ellzey:

Yeah. It's been great. You've had an awesome time.

Erin Hawley:

Yeah. Thank you so much. I love reading fellow book nerds. So I can't believe I was so glad when you started talking to me about Holly Black. I was like Yes.

Lily Newton:

Well, stay tuned. So now you'll maybe you'll be able to read one of Erin's books. That's gonna be great. Thank you so much for being on the show. Erin, thank you for hosting with me. I adore you. And listeners, thanks. And listeners, thank you for tuning in.

Lily Newton:

We'll see you next time on another episode of Everything You Know about Disability is Wrong.

Erin Hawley:

If you liked what you heard, go ahead and subscribe and leave us a review wherever you get your podcasts.

Lily Newton:

Thank you to our listeners. And as always, thank you to Easterseals for giving us the space and resources to share such authentic conversations from within the disability community to our listeners.

Erin Hawley:

And I'll see you next time for another episode of Everything You Know about Disability is Wrong.

Lily Newton:

This is a podcast brought to you by Easterseals.

Erin Hawley:

You know, we actually work for Easterseals, but maybe our listeners don't know what we do.

Lily Newton:

That's true. Easterseals is leading the way to full access, equity, and inclusion for disabled people and their families.

Erin Hawley:

And did you know we've been doing this for more than a century?

Lily Newton:

This includes helping disabled people find meaningful employment and addressing health care needs for all ages.

Erin Hawley:

We're proud to serve communities across the country and ready for the next 100 years. For more, check out easterseals.com.

Lily Newton (commercial segment):

This is a podcast brought to you by Easterseals.

Erin Hawley(commercial segment):

You know, we actually work for Easterseals, but maybe our listeners don't know what we do.

Lily Newton(commercial segment):

That's true. Easterseals is leading the way to full access, equity, and inclusion for disabled people and their families.

Erin Hawley(commercial segment):

And did you know we've been doing this for more than a century?

Lily Newton(commercial segment):

This includes helping disabled people find meaningful employment and addressing health care needs for all ages.

Erin Hawley(commercial segment):

We're proud to serve communities across the country and ready for the next 100 years. For more, check out easterseals.com.