Inclusion for Neurodivergent Kids, with Jen Malia | Spectrumly Speaking ep. 149
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IN THIS EPISODE:
In this episode, hosts Haley Moss and Dr. Lori Butts speak with self-advocate and writer Jen Malia. An autistic mom of three autistic kids, Jen is the author of The Infinity Rainbow Club series and Too Sticky! Sensory Issues with Autism. She is Professor of English and Creative Writing Coordinator at Norfolk State University. She has written for or appeared on the New York Times, the Washington Post, NPR, Parents, Glamour, Woman’s Day, and others. She has a Ph.D. in English from the University of Southern California and is pursuing an MFA in Writing for Children and Young Adults at the Vermont College of Fine Arts. Originally from Pittsburgh, she currently lives with her husband and three kids in Virginia Beach. You can find her on her website at JenMalia.com.
Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.
For more about Haley, check out her website: haleymoss.net And look for her on Twitter: twitter.com/haleymossart For more about Dr. Butts, check out her website: cfiexperts.com
Have a question or story for us? E-mail us at SpectrumlySpeaking@gmail.com
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EPISODE TRANSCRIPTION: Note: the following transcription was automatically generated. Some imperfections may exist.
HALEY MOSS (HM): Hello, and welcome to Spectrumly Speaking. I’m Hayley Moss, an author, attorney and artist, and I’m also autistic. I feel very lucky to share the stage as I do most weeks at work together. And of course, I have a wonderful co host that you may know as Dr. Lori Butts. Say hello.
DR LORI BUTTS (LB): Hi, hello. I’m Lori Butts. I’m a psychologist and an attorney.
HM: I think this was the first time I gave you named introduction.
LB: It was great.
HM: That’s because you deserve to have your name repeated every single…
LB: That’s so great.
HM: You know what, we should switch off next time and just completely mess up the format?
LB: Uh oh, you’re making my head explode.
HM: No explosions, no explosion. It’s actually — we do not endorse exploding heads. Nor do we hope that our viewers and listeners have exploding heads, let alone our hosts. Right. Exactly. That being said, I hope that you are having a good week where your head is not indeed about to explode.
LB: Yes, I am. How about you?
HM: I feel like life is life-ing. We are somehow in the fall. And I don’t know how to fall, though. Should I every time I go somewhere now I see lots of Halloween and Thanksgiving and pumpkin spice. And it’s like what just happened?
LB: It just happened. It just happened.
HM: It did, then again I feel like that is part of existing. And then before I know it, I’m gonna see holiday decorations.
LB: Yes, very soon. Very soon.
HM: I would give that about a month.
LB: Yeah. Get ready. Get ready.
HM: Time is fake. You know, in the middle of the summer, you start seeing Halloween stuff. And then by the time Halloween comes around, you’re already seeing Christmas and winter holidays. And you’re just like did I missed something?
LB: Well, you know, I do think that’s kind of the was sword condition of being in South Florida where we don’t have too many seasons. I think at other places. It’s not as shocking because the weather actually does change a bit. So it’s not just like the shopping, going shopping. It’s actually outside. You’re changing your clothes. So I think…
HM: I mean, but I don’t think that like second week of August timeframe when you start it’s not — the leaves in fall the core. I don’t think that’s what leaves change in other parts of the world. I could be wrong though. Thankfully, we do not have to deal with change too much here. Spectrumly. We even get to bring back old friends as guests.
LB: I love it. I’m so excited.
HM: I do too. So we get to welcome a familiar friend and guest back to the Spectrumly stage we are welcoming back Jen Malia. And as an autistic mom of three autistic kids. Jen is the author of the Infinity rainbow Club series and two sticky sensory issues with autism. She is professor of English and Creative Writing coordinator at Norfolk State University. She has written for or appeared on The New York Times, The Washington Post, NPR, parents glamour, Woman’s Day and others. She has a PhD in English from the University of Southern California, and is pursuing an MFA in writing for children and young adults at the Vermont College of Fine Arts. Originally from Pittsburgh, she currently lives with her husband and three kids in Virginia Beach. You can also find her online at JenMalia.com. Welcome back to the show.
JEN MALIA (JM): Thank you so much for having me.
HM: Thank you for joining us yet again. And I’m so excited to have you because I know there’s lots of excitement going on in your life, both personally and professionally. And we can’t wait to hear all about it. So kind of to kick us off. Can you remind our audience how you became involved in the autism community?
JM: So it was about seven years ago that I got my diagnosis. I was 39 at the time, and it was actually my daughter and I who both got diagnosed on the same day. And it was something I sought out because my daughter was having speech delay and a lot of things were going on at the time. She was really having a lot of meltdowns, she was only two years old. And I just kept going to different places like our pediatrician developmental pediatrician. Eventually, I made it to a clinical psychologist because I knew there was a lot more going on than a speech delay. So it was at that time that by the time I did all the research to try to figure out what’s going on with her. I realized that I too was on the spectrum. It was just from hundreds of hours of just researching and trying to figure out what was going on. So that we both got diagnosed on the same day. And that’s kind of how it all started. It started with you know, I knew nothing at all about autism to be quite honest before I got diagnosed and now It’s kind of a continuing journey since then.
LB: Can you tell us about your new book series The Infinity Rainbow Club?
JM: Yeah, so this this series, the Infinity Rainbow Club was I wanted to show more than the more than just kids that were on the autism spectrum, but also kids from, you know, the other neurodivergent perspective. So I, I wanted to create this club that I called the Infinity Rainbow Club, because it was a way to recognize all the different kinds of neurodivergent kids and really represent a lot of different perspectives. So like in my own family of five, we are all neurodivergent. And we have different combinations of ASD, ADHD, OCD, dyslexia, and dysgraphia. So I wanted to create a book that didn’t just have sort of one autistic character represented or you know, just a few, but to have a full, you know, a full range. At least one in five kids are now diagnosed with ADHD. You know, basically one in five or neurodivergent. And so ADHD, ASD, OCD, etc. So I really wanted to be able to show in my series, not just a couple of kids, like I said, who are neurodivergent, but just show a bunch of them. And so I created this series, partly because I wanted to, to help kids be able to see themselves in books. I wrote the series that, you know, I wish I had growing up as an undiagnosed autistic girl. And I’ve recently discovered, I am not diagnosed, but I identify as someone who also has ADHD and OCD. So I was kind of writing from those perspectives too, by having each book in the series, alternate the point of view.
So in the first book, “Nick and the Brick Builder Challenge”, the main character is an autistic 10 year old boy. And he’s in fourth grade. The other characters that have in the second book, we have Violet, and she is a 10 year old girl with OCD. That book is titled “Violet and the Jurassic Land Exhibit”. And then in the third book, Connor is the main character, he’s a 10 year old boy with ADHD. And that book, “Connor in the Taekwondo Tournament” is the third book in the series. So I wanted to show not not only all these different perspectives, but to to create a space this after school club that all these kids participate in called The Infinity Rainbow Club. It’s the place where stems are accepted. And the main character, Nick, in the first book, tells like we find out in the first book, that he’s the one that decided to create this club. And he approached his special education teacher and said, well, wouldn’t it be great if we had, you know, a club where other kids that are different, like Mia had, you know, a place to meet up and they go to a sensory gym to meet after school. And then they kind of do all these adventures, like fun things like in the first book, they’re participating in a brick builder challenge. So building things with plastic bricks. And then in the second book, they are volunteering at a natural history museum where they’re working on augmented reality, dinosaurs that bet for the Jurassic period. And in the third book, we have a taekwondo tournaments, and also a black belt test, because the main character is, you know, testing too, for his black belt.
So what I wanted to do with that I show not just these aren’t so much books about autism, or neurodiversity, as they are books about kids that are just going about their everyday life doing fun activities. And you know, it’s just there. It’s told from their perspective, but it’s not a book to you know, learn what is autism or that kind of thing. It was it’s their fictional books very much based on my own experiences and the experiences that my kids have had. But, you know, beyond that, there are books that, you know, explore adventures that any kid might have.
HM: I think that’s really powerful. And I was originally going to ask you about why you wanted to write about neurodivergent characters that were so unique from one another, since you mentioned, they all have different diagnoses, but you did such a good job of answering that. I think what I would like to ask you instead, is what are you really hoping that neurodivergent readers feel when they read this? Because I know you mentioned that this is the series you wish you had, and certainly a series that I wish I had. So I tell the story a lot that my first introduction to neurodiversity in books came from the baby sitters club and disabilities Hall for that matter. And while I love the baby sitters club, it was not exactly great and looking back on it, it was kind of ableist so that’s probably an understatement because I can actually criticize it quite well for why it is indeed ableist. But what are you hoping that neurodivergent readers in particular ended up feeling?
JM: Yeah, and that some of the early review copies, I got some feedback from some readers to some neurodivergent kids that read their, you know, their parents copy or you know, so that that was actually pretty fun, they get messages from some of the first sort of neurodivergent readers. And also my kids are always my first readers, all three of them are neurodivergent. And we’re very much a part of the process, as I was revising, and sort of hearing different versions. But what I really what what I love about it is I’m getting feedback that the books are really funny. And for me, like that was just amazing that they’re seeing the humor in this too, because I tried really hard to, you know, create scenes that were fun, and you know, that kids were enjoying themselves and like, you know, communicating in a way where they were using their creativity and humor, because I think a lot of times people think immediately about, you know, books that feature, you know, kids that are autistic, you know, there, a lot of times, it’s really that same stigma that you get when you’re sort of out about in your community, and people find out or asked you about it. And they might say, well, you know, I’m sorry that, you know, your family must, it must be hard, you know, having three neuro neurodivergent kids to raise. And that kind of story isn’t the story that, you know, that kind of sad story about, oh, your life must be hard is not at all what I’m trying to capture in these books.
So it was really refreshing to get feedback from readers, that, you know, these books, hopefully are empowering for these neurodivergent kids, because they aren’t sort of pulling all these. Like, I want to say just stories where, you know, the they’re fun stories, I hope, you know, for readers, and there are challenging moments. Like, it’s not to say that these kids and the books and the main characters don’t have challenges they absolutely do. But they have the same sort of challenges that any kid might have in the book, but maybe just a little different. Because, you know, they’re they might have more challenges with focus, or are more challenges with working in groups and things like that. And those kinds of things I did highlight and there and I do even show how my main character Nick has a meltdown. And the mom goes to his closet where his hideout is and interacts with him as he’s going through this difficult moment. But are you know, when he’s ready for her to come into the closet, because also she knows to give him space. But, and that’s actually something that happens regularly in my family.
So that was something I was pulling from my everyday experience. But what I wanted to show with that is like there’s also some humor to that moment, because just like it is with my son, if he has a meltdown, sometimes we end up laughing at the end of whatever ends up resulting in that scene. So in the book, my character Nick has, he starts, his stomach starts growling because he had skipped dinner, when he was having his meltdown, he left dinner, so he was getting really hungry. And then when his stomach starts growling, him and his mom are kind of laying on the floor in the closet as he’s recovering from his meltdown. And then they start laughing hysterically about, you know, the fact that his stomach was growling. So I tried to capture those fun moments. And that’s really what I want kids to get out of this. I want them to have fun reading books that have characters that are like them.
LB: This is like exactly what a lot of our guests and Haley have spoken about over the years, like kind of this void this space is not, and you’re filling a much needed void. And I’m super excited about it. And from my perspective, my question is, you know, it was writing was this process of writing about this therapeutic for you?
JM: Yeah, absolutely. And I did get sensitivity readers, I asked my publisher, you know, could we get sensitivity readers for the series, and they were actually very open to that, which, for me, I don’t like to think that I can write books that are going to, you know, my own experience is just my own experience. So if I’m going to write a book that has an autistic character, I would like other, you know, another perspective from another autistic reader as well. And same with OCD and ADHD since I had multiple points of view for the books. So what was really interesting about that is I learned a lot from writing the book with the second book was violet, and she has OCD. And what I learned from the experience was that the feedback said that, you know, the real Her found the way that the parents responded to violets OCD to be problematic. And they actually pointed to certain scenes where it wasn’t so much that you know, her intrusive thoughts were believable her, you know, the way she thought in her mind and how she experienced things from her perspective, seemed all authentic and realistic. And that was very much drawn from my own experiences as a child, not knowing that I had OCD.
But you know, looking back now, realizing that those intrusive thoughts really were because of that. And what was interesting is that when I went back in and made these revisions, I think that the manuscript became so much better because I had that outside perspective. And it not only helped me make a better book, but it also helped me realize that the way that I was raised, you know, the way that I my OCD was never treated, but the way that I was dealing with my OCD, and how I kind of put my character in that same position of dealing with it, dealing with those intrusive thoughts in the same way that I did was problematic, too. And so it kind of changed my perspective on, you know, just how I should, or how I might want to think about my own my own OCD as well. So it actually helped me personally, not only, you know, with the creating the books, so I thought that was just amazing to have that kind of feedback.
HM: I am a big fan of sensitivity readers especially I’ve had the honor of getting to sensitivity read more than one manuscript. And I have also come back with feedback like, Is this realistic? Or even in the case of I had to sensitivity read nonfiction is how would the autistic people in your life feel about this? Are you sharing this, like, it’s such a great process? And it does show that there is no singular experience? So I’m grateful you shared a little bit about that. So obviously, this series sounds fantastic. When is it coming out? When can we start reading? And how can we best support you to do so?
JM: So the first book, “Nick and the Brick Builder Challenge” is actually coming out September 26. And “Violet and the Jurassic Land Exhibit” comes out October 24, and “Connor and the Taekwondo Tournament” comes out March 12. So they’re all coming out very, very quickly. I actually wrote the mall and a little bit over a year vote and revised all three books. So it was very intense for a bit. I have a lot of information on my website, jenmalia.com. And yeah, that’s, that’s about it.
HM: Awesome. So I will be sure, and I’m sure many of our listeners will as well to preorder the Infinity Rainbow Club book series, especially if you have young neurodivergent folks in your life who can benefit from own voices and neurodivergent characters in their lives, I knows I certainly need more neurodivergent characters in my life. And also, my younger self would have been extremely grateful for this series.
So with that, we want to take a little bit of a nosedive into our segment on how important it is really exposing children to neurodiversity, when we’re talking about our neurotypical kids possibly picking up a series like the Infinity rainbow club, and making sure that neurodivergent kids grow up, wanting and having experiences meeting people who are different than they are to. So I feel very strongly about this. I didn’t start meeting other autistic people personally until I was a teenager. And it was one of those experiences that I talked about quite a lot. So the first person I met who was also autistic, was a college student, I was 13. And it was the first time I knew autistic people that were going to universities and stuff. So it was a really powerful experience. And I think I want to start off with you, Jen, maybe chatting about what kind of exposure your children are getting to people who are different than they are.
JM: Yeah, what’s interesting is, so, a lot of times when I think about my own experience and how I said I, I had no sort of reference and it wasn’t until I got diagnosed that I even knew, you know, what really autism was and my perception was Rain Man before that. So it was really interesting trying to educate my kids and help them to, you know, learn or to kind of find out they’re like, what turns out to be like they a lot of their friends ended up being neurodivergent whether or not they knew that when they were when they were first interacting or not. But when I talked to some of the parents of the kids that my, the my kids spend time with, it turns out that a lot of them are neurodivergent, which I think is really interesting because my kids are just starting to understand even what it means to be in there. are divergent. So they’re 810 and 11. And I think, you know, at first even just the word autism or neuro divergence, like, these were very foreign words to them. And I talked about it as brain differences and how, you know, we, we sometimes do things a little differently, but it’s, you know, they’re not that it’s, it’s okay to do things differently. And I try to point those things out sometimes, especially when they’re getting frustrated with certain things and explaining how it’s okay to do things that way. Or, you know, to need accommodations, like things like, you know, at school, both two of my two of my three kids have certain accommodations as well, one has a 504, and one has an IEP. So those kinds of conversations, I think, are interesting, but like I said, a lot of their friends end up being neurodivergent, whether or not they, you know, they didn’t know that necessarily when they when they first started spending time together. And yeah, I think it’s really interesting, like my husband, and I also didn’t know we were neurodivergent, before we started dating, and got married and had kids. So it’s kind of interesting how that happens.
HM: I kind of feel that in my soul, because that’s what happens with a lot of my friends is I’m like, That explains why I get along with you. So well. You know, that you eventually figure out they’re neurodivergent. And they are they figure it out themselves, you’re like, oh my gosh, that explains a lot. And then we’ll also have to relearn. So I know that there’s this kind of how we teach kids and young people about themselves. I’ve learned when I have neurodivergent people in my life, even as an adult, even if it’s also other autistic people, I am learning about autism or neurodiversity all over again, because, for instance, the way that you experience the world as an autistic person is very different than the way I do as well, let alone how neurotypicals experience this world, which makes zero sense to me. But I think it’s really fascinating how we have these conversations at all ages and stages, and how we’re constantly still learning and questioning even what we know, even with, in and without the bounds of our own lived experience.
LB: That’s a very good point. And I you know, I think it’s just the broader discussion about, you know, kids teaching kids inclusivity and, and teaching kids to accept themselves and accept other people. And their differences. And, I mean, it’s just, it’s so important. It’s a constant process, I think, depending on your own life experiences and your experiences with other people. We just as adults need to continue to foster that and, and have an open line of communication. Because kid, you know, different developmental points, kids are very attuned to same different, US them kind of situations. And if, as adults, we need to continue to foster kids thinking that different is is good, not strange, or, you know, those types of concepts, which are very important across the lifespan for all of us to, to understand that we’re all in this together. On this planet, together, we’re working in the same goal just to have happy, healthy lives.
HM: And so much of teaching inclusivity, I think also begins with your family and the adults around you, too. So when we do better as adults, we’re able to pass that on to the youngins’.
LB: 100%.
HM: I like that we are having this conversation on inclusivity above all else, because I think that’s really what this comes down to, is even just today’s conversation about making sure all kids feel seen and represented and that they can find themselves in a book or even just how they have these conversations and are exposed to folks who think and act and move differently than they do that it really is just all about inclusion and the friends and folks we meet along the way. And sometimes we have more in common than we think we do. I just think that’s all really, really amazing. And I also really want to thank Jen for sharing all about her books and what she’s doing out there. So folks, don’t forget to check out jenmalia.com and see what she’s up to and the rest of us.
If you want to please check out differentbrains.org And don’t forget to check their Twitter now ex at DiffBrains as well as Instagram and don’t forget to look for them on Facebook. If you’re looking for me, I can be found at haleymoss.com or also on all major social media. I do Twitter / X Instagram, Facebook and Tik Tok apparently So I am on all the things and please say hello if you would like to.
LB: I can be found at CFIexperts.com Be sure to subscribe and rate us on Apple Podcasts or your podcast app of choice. And don’t hesitate to send questions to Spectrumlyspeaking@gmail.com. Let’s keep the conversation going
Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.
