Justice, Intersectionality, and Neurodivergence, with Morénike Giwa Onaiwu
This week I’m talking with powerhouse Morénike Giwa Onaiwu about intersectionality and neurodivergence. Morénike is a global advocate, educator, disabled person of color, non-binary woman, and parent of children on the autism spectrum. She is a prolific writer and social activist whose work focuses on intersectional justice, meaningful community involvement, human rights, and inclusion.
During our conversation, we discussed what it was like for Morénike to get an autism diagnosis as an adult, the valuable knowledge that parents can receive from other autistic adults, the impact of getting a late autism diagnosis for black and brown kids, how intersectionality can help us understand the consequences of an autistic diagnosis in marginalized communities, and much more.
About Morénike Giwa Onaiwu
Morénike Giwa Onaiwu is a global advocate, educator, disabled person of color, non-binary woman, and parent of children on the autism spectrum in a neurodiverse, multicultural, twice-exceptional serodifferent family. A prolific writer and social scientist/activist whose work focuses on intersectional justice, meaningful community involvement, human rights, and inclusion, Morénike, who was raised in the United States by West African immigrants, is recognized as a leader in various social justice activism endeavors.
Morénike is a highly sought-after public speaker, trainer, and consultant who has presented at the White House, the United Nations, and numerous peer-reviewed international conferences. Morénike works collaboratively with various entities to address the needs of underrepresented and marginalized individuals and groups. A contributing author/editor of several publications, Morénike has written for and/or been featured in the NY Times, Psychology Today, the Atlantic, the Today Show, NPR, BBC, Salon, HuffPo, Spectrum, POZ, and Autism in Adulthood, etc.
Morénike is a co-editor of two AWN publications: Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew About Growing Up, Acceptance, and Identity from Beacon Press and All the Weight of Our Dreams: On Living Racialized Autism. Morénike’s forthcoming Neurodiversity en Noir: A Collection of Black Neurodiverse Voices will be published by Jessica Kingsley Publishing in 2022.
Morénike was the first Black woman to Chair the NIH-funded Global Community Advisory Board for HIV clinical research and the first Black Executive Board of Directors member of the Autistic Self-Advocacy Network and Autistic Women and Nonbinary Network. Morénike is the first selectee of the Interagency Autism Coordinating Center (the US federal advisory committee on autism) who is an autistic woman of color. Additionally, Morénike is a Humanities Scholar at Rice University’s Center for the Study of Women, Gender, and Sexuality and Co-Chair of the Women’s HIV Research Collaborative of the Office of HIV/AIDS Network Coordination. Morénike has recently been appointed by Dr. Anthony Fauci to the Strategic Working Group of the National Institute for Allergy and Infectious Diseases.
Morénike has a Bachelor of Arts in International Relations, a Master of Arts in Special Education with a concentration on autism and developmental disabilities, and is a doctoral candidate.
Things you’ll learn from this episode
- The implications and impact for Morenike in receiving an autism diagnosis as an adult
- Why so many autistic women go undiagnosed until adulthood
- The importance of learning from people who live with autism rather than the “experts”
- How black and brown children are affected by late diagnosis
- The connection between gender-expansive identities and neurodivergence
- How intersectionality can help us understand the consequences of an autism diagnosis in marginalized communities
Resources mentioned for intersectionality and neurodivergence
- Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew About Growing Up, Acceptance, and Identity edited by Emily Paige Ballou (Editor), Sharon daVanport (Editor), Morénike Giwa Onaiwu (Editor)
- All the Weight of Our Dreams: On Living Racialized Autism edited by Lydia Brown, E. Ashkenazy, and Morénike Giwa Onaiwu
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Debbie Reber 00:00
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Morenike Giwa Onaiwu 00:19
The more intersectional identities that you have that are marginalized. So the more like if you look at race, gender and disability, the more that they intersect, the more likely it is that there’s going to be suboptimal outcomes, you’re going to look at the likelihood that that person is going to have the same type of educational attainment as someone who isn’t that race or isn’t the agenda or both, is is different, the likelihood that they’re going to be a homeowner or they’re going to not be in the criminal justice system or all of the different you know, markers, social determinants tend to be at higher risk.
Debbie Reber 00:54
Welcome to Tilt Parenting, a podcast featuring interviews and conversations aimed at inspiring, informing and supporting parents raising differently wired kids. I’m your host Debbie Reber on this week’s episode I’m talking with powerhouse Morenike Giwa Onaiw. Morenike is a global advocate, educator, disabled person of color non binary woman and parent of children on the autism spectrum and a neuro diverse multicultural twice exceptional Ciro different family. She’s a prolific writer and social activist whose work focuses on intersectional justice, meaningful community involvement, human rights and inclusion. Morenike has presented at the White House, the UN and numerous conferences and Her work has been featured in The New York Times, Psychology Today, Atlantic, The Today Show and much more. Morenike was the first black woman to chair the NIH funded global community advisory board for HIV clinical research and the first black Executive Board of Directors member of the Autistic Self Advocacy Network and autistic women and non binary network. I could go on and on listing credentials because Morenike work is so impressive and so extensive. For this conversation, we focused on what it was like for Moreniketo get her autism diagnosis as an adult, the valuable knowledge that parents can receive from other autistic adults, the impact of getting diagnosed late for black and brown kids, and how intersectionality can help us understand the consequences of an autistic diagnosis in marginalized communities. Such a rich conversation, I hope you enjoy it. And a quick reminder that with this season of the podcast I’ve also just launched play back Fridays whereby every Friday I’ll be re-releasing a powerful episode from my library. Tune in for episodes with people like The Out of Sync author Carol Kranowitz, author of The Explosive Child Dr. Ross Greene, Neurotribes author Steve Silberman, my original Asher specials, and episodes on things like navigating tricky dynamics with family who don’t get it, transitioning to homeschool and so much more. If you’re already subscribed to this podcast, you don’t have to do anything. Just keep an eye out for new episodes on Fridays showing up in your podcast feed. Lastly, I want to give a quick shout out to new supporter of the podcast Sara Wiener. Thank you so much for joining my Patreon community and helping me cover the cost of producing this show. If you get a lot out of this podcast and want to join Sarah in supporting it, you can sign up with Patreon to contribute as little as $2 a month. To learn more visit patreon.com/tiltparenting. Thanks so much. And now here is my conversation with Morenike. Hello, Morenike, welcome to the podcast.
Morenike Giwa Onaiwu 03:53
Thanks. I’m glad to be here.
Debbie Reber 03:55
Oh, my goodness, there’s so much that we could talk about today. And I’m just really excited to have a rich conversation with you. And I’m assuming that there are going to be listeners who are unfamiliar with who you are in the world and the work that you do. So I was wondering if you could start by telling us a little bit about your own personal story and how it kind of led you to be doing the work that you do today.
Morenike Giwa Onaiwu 04:17
Sure. Well, first Hi, everyone. Thanks for being here. I really appreciate your time and your interest. So my name is Morenike and I am involved in a lot of Disability Justice, advocacy and social justice work as a person who’s neurodivergent and a parent of disabled and neurodivergent children. But I guess some of it kind of came about, I would say by accident, but I don’t think there really are any accidents. But essentially, I was born in the United States in the Midwest. My parents were immigrants from West Africa, came from college here for college. ended up kind of stuck here because of this one military coup or another going on and they didn’t really feel comfortable bringing kids who were born in America, and that was kind of what we knew, you know, kind of, I guess, spoiled into, you know, political unrest. And so they were waiting things out and kept waiting. And it just looked like, Okay, looks like we’re gonna be here for some time, let’s get out of this cold and snow. And we moved to Texas and so I, you know, finished school there. And then you know, I went off to college and kind of lived my life. And so in all of these different experiences that we had, like, when we were in the Midwest, moving around for this postback program, or this preceptorship, or this grad program, my brothers and I were always different. But you know, we attributed a lot of that difference to our parents heritage, it’s not that there weren’t other, you know, students of color or what have you, my parents, you know, lived in international student housing for a while, so there were people around, but it wasn’t the majority. But the difference was, it didn’t seem like it was an okay thing in Texas, those were, I really noticed the difference more so than you know, and you’re in the Midwest, and then you know, you know, people talk about Minnesota nice. And then like, and then we were in Missouri, Nebraska, Kansas, and we were younger. So I think things are different when you get a little older. No, in Texas, people were a lot more blunt, about things that they didn’t understand or like, or they would ask odd questions. And so for a lot of the time, you know, I just really felt different, I felt like an outsider a lot of the time. And I did think some of it was possibly race related, or whatever. And I was in gifted and talented classes. So there was some of that to the competition with your peers. But I always felt different. I always knew I was different, my whole life, but I just didn’t know what exactly the difference was. And at home, it was accommodated. That’s just how she is. Oh, she just does things that way, or this is, you know, she likes to eat on that side of the table or whatever. But outside of home, it was like this hidden, weird role to life, like a whole bunch of them that I couldn’t figure out and like, and you know, so I just had to learn to kind of try to play the game and pretend and figure out what to do. And so I grew up and I worked and I did an AmeriCorps program, and I got my undergraduate degree, and I worked in the nonprofit sector for a while. And then I went back from my grad degree, and I always cared about working with the community. And you know, those types of you know, those things were always really appealing to me. And I was involved in a lot of social justice related work working with various different marginalized communities, and kind of fast forward, I became an adoptive parent, and then later married, and then I became a biological parent as well. And so all of my children have various disabilities. And so in trying to learn more, trying to help them try and educate myself, that’s what prompted me to go to graduate school because I just felt like I was on the outside looking in and I just couldn’t get straight answers and wasn’t taken seriously. and wanted to be able to make sure that they have the best outcomes. And in learning more and advocating for them, is when I kind of was pointedly asked by one of the, you know, my children’s providers about my own neurology and so I’d had some other diagnoses i’d struggled with, you know, depression and anxiety you know, for a number of years when I was younger when we were putting put in the gifted classes, you know, have different neuro psych testing and you know, cognitive testing and all those types of things. But I was diagnosed in adulthood with ADHD and inattentive ADHD. And then later, I was asked, you know, if I had been evaluated for autism, and I was like, No, and they’re like, but you’re just like these two autistic kids that you have, you know, not to mention my other children. I’ve won, you know, intellectual disability. I’ve got, you know, kids with ADHD, we got a little mix, you know, in the house, and, like neurodiversity Central. And so I started doing some research and it just it really started making a lot of sense to me, I was like, Okay, well, this is why I didn’t pick up on this thing, or this is why this worked for me or I wasn’t alarmed or my child did this or that, because I had an understanding of his A lot of it was similar to me. And so it was just really, really, it was so eye opening, it was such a paradigm shift to realize that I’ve been basically undiagnosed my entire life, it was almost like being I don’t know, but like The Truman Show or something, like finding out things, something is completely different. Your reality was really different than what you thought it was. And I just wanted to kind of learn more and share more with others I didn’t see a lot of people that looked like me and my kids I saw I read a lot of things that didn’t really seem right didn’t resonate with me and I just wanted to kind of, I didn’t really have much of a filter, so I just kind of would ask questions or share my ideas, and it just kind of started to grow and, you know, in terms of like, my writing, and my volunteering, and it just kind of really morphed into something that really is, you know, I guess kind of like a, like a bedrock of my life, so to speak. I can’t see myself doing anything else. Like I’m just really it’s important to me to, you know, to talk about neurodiversity, to talk about acceptance and inclusion and to work with entities to make it happen and to empower people to try to make our world more equitable and, you know, a more accepting place for everyone.
Debbie Reber 09:54
Yeah, it’s so interesting to hear your story and that you were someone who was involved. In social justice work and, and working with marginalized communities and cause related work, it seems like you took all of that experience and that passion and with this new information, it was kind of like the perfect storm in a good way of being able to really affect change and be such a vocal leader in this movement.
Morenike Giwa Onaiwu 10:19
Yes, I really think so I feel like a lot of the experiences that I had worked with refugee communities and I worked in, you know, HIV treatment and prevention and Title One schools and all of these different types of programs. And so I feel like it did, it really did kind of come together, and allow me to be able to use some of the tactics and tools that I’d learned in this capacity. Like I think about a lot of the work that I learned from some of the luminaries who, you know, had been trained by people who were in act up in the 80s, and some of the things that they had done, and how farther along they are in terms of the evolution of community involvement, engagement and leadership, as opposed to this siloed way that it’s done with, you know, developmental disabilities and with autism, and and so I felt like, if I see this happening over here, this is possible. Can’t it be possible for us? Why aren’t we doing this? Why aren’t we doing this? You know.
Debbie Reber 11:11
Yeah, when you were identified as being on the autism spectrum, you mentioned this kind of Truman Show moment. And I love that I mean, there are many listeners of this podcast, who have similarly discovered their own neural divergence, through going through the process with their kids, whether that’s ADHD or twice exceptional or being autistic. I’m wondering if you could just talk a little more about that, because I’ve heard such different responses when I’ve talked with autistic adults who discovered as adults that that was their diagnosis, what that integration was like for them.
Morenike Giwa Onaiwu 11:44
So neurodiversity is a fact of life. And, you know, I feel like there’s a lot more neuro divergence in the population, man, we know. And though, of course, not every person who has an autistic child is autistic themselves. But typically there’s, I feel, generally there’s some type of neuro divergence of some sort, whether it’s ADHD, or whether it’s, like you said, being twice exceptional, whether it’s, but again, not always, but I think a lot of times people come to the sense of awareness of themselves, that’s hard to develop when it’s just you. But when you’re, you know, when you have a little people that you’re responsible for, and you’re in kind of take, I guess a little bit more, I wouldn’t even say an objective point of view, it’s not because it’s your baby, but, but it’s not you, it’s external to you. So you get to observe. And so for me, so I had all these different little diagnoses. You know, like, I had a lot of challenges when I was young, with not understanding a lot of the things about life, a lot of the discrepancies from between what people say, and what they do when injustice, and a lot of things were very, I took very, was I was sensitive, and I took things very hard. And I knew I was different. And I was just really tired of the work that it took just to navigate a typical day. And so I was suicidal from the age of 11, and 12. And I had a lot of challenges. And I kind of wore different masks throughout my life. And so you know how to get a major depression diagnosis. And then later, I acquired some other diagnoses. And so it’s like, every time I get one, it’s almost as if there’s a smudged mirror and someone cleans it a little. And you can see a little more, a little more, but it still was, I still couldn’t see clearly and then even so even though I knew, okay, this impact, or this explains this, or this kind of can relate to this, but it never was really enough of anything that at HP that cleaned a lot of the mirror when I because I was like wow, because in my mind, I knew about ADHD, you know, and everybody who I knew who had ADHD, they were they you know, when I grew up, they were on Ritalin, and they were like the stereotypical little Dennis the Menace, that kid that you like, but he just can’t stop touching everything, he can’t stop talking, he can’t stop running, he’s always about his feet, it was again the things that people are looking for. So the stereotypical little boy who isn’t standing in line properly, or, you know, just kind of the motor thing like that’s what ADHD was, and I was like, that is so not me, I can sit quietly in the room, I can entertain myself I can this you know, and I had so very little understanding of all of the ways you know, the fact that I owe it my entire life lost so many pairs of keys, so many library books, textbooks, couldn’t remember this couldn’t keep up with that, we’d go up the stairs and forget what I was going for, like, my mind wandered all the time. You know, it’s like when I was really busy internally, but I just didn’t show it. It wasn’t, you know, socially acceptable to. And so that cleared up a lot of things. For me, that helped me a lot. And I was like, wow, I just had no idea that other people’s brains didn’t do that, that they are sitting down trying to think of something and then a brain changes like with the wind, like every second I didn’t realize that that wasn’t the way it is for everyone. I mean, I wouldn’t know any different. I started to kind of pay attention to some of the strength that I had, like hyper focusing and things that I could do. And try to give myself supports like things like calendars and reminders for my struggles. But autism wasn’t something that I knew much about. I didn’t even I would say I didn’t even know enough about it to really have a negative opinion, no perception of it, it just really wasn’t really on my radar. I knew about it from this one soap opera and a few things that I’d heard and read here and there, but I didn’t really have much, it wasn’t a part of my life. And so when my daughter was born from the time she was very little, she, I was relieved, actually, because I didn’t know what to expect, because I’d started parenting as an older, you know, an adoptive parent. And so I started with a five year old and then a little older, and so on. And then, so when I started with a newborn, everything that I’d read to prepare myself everything I’d watched, I was just kind of concerned about what you know, I wanted to be a good parent, but she was just so grateful she made sense to me, she would make certain movements and that’s that was a cue to me that Oh, she wants her diaper changed, or she’s hungry, or she didn’t like to sleep in the crib. I just felt like it didn’t feel right. And she prefers to sleep in the bed. Like she liked she had these different ways about her. But everything made sense to me, I kind of felt like we had this unspoken language like this, you know that we had this nonverbal communication that made sense to both of us. And she didn’t like certain things, you know, the sound of the vacuum cleaner, or the sound of blender, I didn’t like those things either. So I just wouldn’t.
Morenike Giwa Onaiwu 16:08
I understood her. And she was just so easy for me. And it wasn’t till, like, took her to a mother’s day out program. And they were asking me all these questions about her. And like, within her first week, and they were confused, and they were concerned, and I didn’t understand what they were concerned about. She was just fine. Seeing her throughout their eyes, and then getting you know, so going through the process, and learning more about autism and the way that I guess the non autistic brain thinks and all of these different things, and then kind of learning about myself, it really did feel like you know, like I mentioned Truman Show, sometimes I mentioned that. It’s like the sixth sense at the end, when you know, when we find out that Bruce Willis has been a ghost this entire time. And you just didn’t know. And then you look back, and there’s all these signs and all these little things, and they even show you a few of them. And I was like, wow, I looked back at so many things. And I wish that I had known I was thinking of expectations that I had of myself that were unfair, there were times that I could have taken better care of myself or built in some things to support myself or advocated for myself. I just looked back in hindsight, and it made me both sad and happy. Like, it made me sad, because I saw a lot of the times that I struggled unnecessarily, and I wished I had had this understanding, but it made me happy because I had always felt like What the frick is wrong with me?” Like, what is it? What, what is this stuff? Why can’t I get it? What is going on, but I can’t just I’m just off, I’m just wrong. And I realized that wasn’t the case. And I just was so freeing, you know, to really understand No, this is just who you are. This is just the operating system that you have. And that was something that made sense to me because as being a parent, I always tried to make sure to affirm my children that you’re not wrong, you’re just different. Okay, you know, this, you’re adopted, and that’s not a bad thing. This is just your reality, and this is who you are. Or Okay, so you’re This one is left handed and most people are right handed. So this is a little different, but that doesn’t make it bad. We just have to figure out okay, you know how what works, get a different pair of scissors or whatever. So it was the same type of thing. With me, it just really, I just really understood so much about myself. It was really cathartic. It was just I don’t know, I feel like it’s, it’s been one of the most monumental experiences of my life.
Debbie Reber 18:26
Wow, it sounds so powerful. Thank you for sharing that. It makes sense. And I bet there are a lot of listeners who are relating to that experience. This may be a good time to mention a book that you co edited that came out I think in the past year called sincerely your autistic child what people on the autism spectrum wish their parents knew about growing up acceptance and identity. It’s a wonderful book, would you take a moment to tell listeners what they would expect in reading that book
Morenike Giwa Onaiwu 18:55
Because I’m super excited about this. So sincerely your autistic child is a project so it was published by Beacon Press who we love, you know, they’re they they’re a social justice press they have. So you want to talk about race and all these other different books like they have things that are serious nonfiction that people don’t want to talk about their independent nonprofit publisher. What happened is several years ago, I do equity and I’m consulting with autistic women and non binary network and I’ve been involved when I became more aware of my diagnosis, I was involved in a lot of different groups. So I’m in you know, some parenting groups and some self advocate groups and some research groups and so on, like as a volunteer. And so this was one of them. And so they had created a guide, one for parents and one for youth. You know, it’s kind of giving little explanation or pointers or tips about your child’s diagnosis, what to expect and then kind of living because you know, diagnosis is one period in time and then you have the rest of your life. And so people would want it more because a lot of what you get when my Children were diagnosed, I was handed the 100 day kit. It has been revised since then, and its content is better. And though the initial one was pretty fear mongering and not written with much understanding of neurodiversity at all, and so this was a way of everywhere you turn, there’s quote, unquote, autism experts, professionals, and this and that, and then you’re like, some of these people, okay? I’m like, okay, so you’ve worked with students or with clients for X amount of years, but you yourself are not autistic, you’re not raising a child that’s autistic, you know, like yourself, but you’re an expert. And I wouldn’t ever dare say that. I’m an expert on what it’s like to, I don’t know, I’m here in Texas, and I, you know, went to school and got my I went to college in California. So I’ve always been adjacent to Mexico, I wouldn’t say because I live amongst Mexican Americans, and I live in an area that has a lot of lanais influence that makes me an expert, like, give me some familiarity, but I’m certainly not an expert. That’s not my lived experience. And so it just was odd to us that everyone who was giving all this advice, sometimes the advice was laughable, like it really was like, What? Are you sure? Like, are you telling people to do that, like that makes no sense. Or you think that’s why that happens, or, like it was, sometimes it was, well, meaning sometimes it was good and helpful, but sometimes it was just completely off. And so it was like, let’s give people some pointers and some feedback, like things that, you know, you’ve learned school of hard knocks style, you know, like, you’ve made mistakes, and you’ve learned this or you figured this out about yourself, or you know, this, but you were never able to express it, that’s kind of if we could take those things kind of like those little nuggets and share them with people. Because most parents really do want to do right by their kids, you know, and they care and you figure out a lot, you don’t have to share the same mineralogy as your child to, to learn about them and you know, learn how to accommodate them and care about them to a point, but you may not still don’t necessarily relate. So sometimes it can be nice to have advice. And I thought about how helpful it had been for me as an adoptive parent to read the voice of adult adoptees, you know, because I’ve never been adopted. And so as much as I love my kids, and love them, love them, love them as fiercely as I advocate for them. And as much as I feel like I’m sensitive to their experiences, it’s not my lived experience. I’m adjacent to it, but it’s not mine. And so there it is, you know, I can figure some things out and learn some things. But there’s always wisdom in the voices of people who’ve had these actual experiences. And so it’s been invaluable for me. And I feel like it’s made me a better parent. And so there was a self published book called What Every Autistic Girl Wishes Her Parents Knew. And so this one actually is kind of like expanding that concept. So we, we took, we invited all of the people who were in the self published book, when we got the contract for this one, too, if they wanted to contribute and all except for one, we’re able to. And then we also invited new contributors, because what we felt was, they’re starting to become this, this schism, you know, and it’s not that it hasn’t been there before. But it’s becoming I think, more and more apparent where there’s autism, parents on one side, and autistic adults on the other side, and I don’t think we need to be on sides, you know, we all want a lot of the same thing, which is for the things to be better for these kids, things to be better for people, adults, because children do turn into adults, and we stay and don’t let you know, we’re adults, most of our lives. If we’re fortunate enough to live and for society to be better, we might not always agree on mechanisms or the route or the way to describe certain things. But there’s a lot of shared interest. Basically, we felt like this is a way to say, Hey, friends, were things that you know, maybe share some things that you didn’t know, create this dialogue where it’s not tension, and this one saying, No, you’re not like my kid, and this one saying, you’re doing everything wrong, and you’re ruining your child’s life, like let’s have a constructive dialogue. Let’s talk to parents and let them know what they’re doing, right, because they’re doing a heck of a lot of things, right, that they may not realize the people are so hard on themselves, and they don’t see or they don’t acknowledge the areas where you’re doing a great job. And then there’s some areas that you can prepare for that might be coming in the future, some possibilities, you know, potential risk factors, or there’s certain things that you could do differently that would have a better your child would hopefully respond better, or be more at ease, or have them in a different environment. And so we describe it as kind of like part memoir, part guide and part love letter. Because there’s some people in there who are writing about how their parents have been their rock, they’ve had their back, they’ve looked out for them and how much they love and appreciate that and so we want parents to just feel seen and heard because, you know, parenting is you know, they say the toughest job you’ll ever love regardless of your child’s Rosie, it’s hard. There’s no, you’re just figuring it out. And you, you do the best you can but you make mistakes. So we wanted people to be able to own that they’re in this and they are trying and they care. And I also wanted people to not let their kids not go through some of the things that we went through because if our parents had known better, a lot of us they would have done better. And so that’s the benefit of being able to have walked in those shoes before, so that others don’t have to, you can deter them from the dead ends and the potholes. And so the book has people of all different backgrounds, we had a contributor that was a teenager who was unable to contribute, unfortunately, he was working on another project, but we’ve got people in their early 20s, we’ve got people, you know, older than that. And then we’ve got even, you know, senior citizens, we’ve got, like two grandparents in there. We have people who are Muslim, and Jewish and agnostic and Christian and pagan, we have people who are speaking primarily, we have people who are non speaking and type to communicate, we have people with advanced degrees, and people who didn’t even you know, finish high school, we have people who live independently or live with a partner, and the others who live with their family, others who currently or have previously lived in congregate care or have 24 hour support, you know, like staff with them. People have different cognitive abilities, and just racial backgrounds and just a little bit of everything. And because we want, you know, the spectrum, we wanted to give a full range of what people’s lives are, like, most of the people in the book, though not all, but many of them were assigned female at birth, some of them still identify as a woman, you know, there are a number who do not who identify as non binary or who identify as you know, trans masculine or, you know, are gender neutral in some way. And then we have a couple of people who were assigned male at birth, but there isn’t anyone in the book who currently who was assigned male at birth and identifies as a cisgender male. And that was kind of done intentionally also, because in autism, there are so many voices, I mean, I’m grateful for the fact that we do have Temple Grandin, one of the most well known autistic people and is obviously not male. And so it’s not, but so much about autism is focused on males focused on male characters focused on you know, the perspectives of males. And there’s a lot of gender diversity in autism, and there’s a lot of, you know, higher likelihood and with autism and other forms of neuro divergence of the person being more likely to be, you know, LGBTQ. And so we want it to reflect that because I think that’s something that’s concerning, or for parents, because we, there’s already things that they’re looking into, like, Okay, well, my child might be predisposed to seizures, or certain types of allergies or certain types of things happening with their, you know, joints or their mobility, suicidality or whatever. But what else should I think? What else should I know? So your child might be more likely to not identify necessarily with the gender that they were assigned at birth, and it may or may not have anything to do with their sexuality. You know, I think that’s important for parents to know when their children are young, so that you don’t accidentally scar them or, you know, say things that are harmful doesn’t have to be this controversial thing that I think a lot of people feel that it is, it’s really just all everything about us it’s like living in another country or an another planet that’s different than the one you you know everyone else is from so it’s like, spending your whole life speaking a foreign language, but no one taught it to you, you had to learn it on your own or, or being dropped off in a planet, we’re different than the one that you you come from. So you have to try to learn the rules of this new country. So it’s, it’s because of that things aren’t going to everything’s not gonna fit and chill in the same way. So I think rather than being frightened of it, if parents could be aware of it, and it’s not, it’s not the case for your child, cool, that’s fine, to have some awareness that might help someone else you know that in the future that someone else that you know, and if it is something that you know, ends up being a real reality for your child, you can educate yourself and you can respond in a way that hopefully won’t create a rift between you and your child.
Debbie Reber 28:36
Yeah, I really appreciate you bringing that up about gender identity and just the the prevalence of autistic and other neuro diverse virgin people being part of the LGBTQ plus community and actually, I’m just gonna say this now for listeners who are listening to this the next week the episode is specifically talking about gender identity and differently wired kids so we’ll be really diving into that topic. So thank you for sharing that. And I just want to say to this book, it feels like such a generous gift for parents. It really is it feels like a letter. It feels like you’re reading a letter you’re getting like almost a dictionary or a translation guide to this other language right? So such a valuable read if you’re raising an autistic child and really want to do right by them and listen to the voices of actually autistic adults to learn from them. So just fantastic.
Morenike Giwa Onaiwu 29:31
Thank you and I just I’m really glad that you’re gonna have that topic because I think it’s so important like there’s you know, there’s a concept I’m Dr. Nick Walker, has a blog on neuro cosmopolitan. And then there’s Dr. Remy year ago with her both autistic and has a book where it talks about you know, like some of the concepts of being neuro queer, and all of these other things that autism but other other neuro divergences as well, just I think about myself So many people that I know, I guess the assumptions that you make, because just like with ADHD, I didn’t, I thought that was how everybody’s mind worked. I knew autism, although I didn’t know what it was called. I knew that I was different. I knew that I could hear the buzzing sounds that no one else could hear. And they, and people would think that I was just making things up or being dramatic, I knew that certain things smelled really strongly to me or felt, you know, really pleasant or unpleasant, and other people didn’t notice those things I knew started with vias got stuck in my head, like, those were things that were quite clear to me that people didn’t feel or think that way. But gender was one that was completely different. And, um, for me, in that, I just assumed that everyone, this is just what you call this thing. You know, like so for example, read is read in English, but it’s Earl Hall in Spanish, you know, or whatever. So this is just the name or a term for things and so, you know, I thought about how you use the word flat in you know, in the UK, but you might say, apartment in the United States, or what have you. So, just things are just cold things, for whatever reason, entomology can be, you know, arbitrary. And so I just felt like what if you have a vulva, you’re called this. And if you have a, you know, scrotum, your Coke, this. And it’s not that you really feel like it, or don’t feel like it, it’s just a name. And just kind of like a parents might name their child, Mary or john and you get older and you’re like, Oh, I’m not a Mary, I’m a Taylor, or I’m a su, you know, they picked it because they’re naming you after your grandparent, or they named you after their favorite author, or you were born at a certain time of night reminded him of this movie. But that doesn’t mean that name fits you, that’s what you were given. But it’s just, it’s just the name that you know, you’re familiar with, it may or may not be for you, you know, and so, I thought that was the case with everyone, okay, you call this person, a woman, you call this person, a man, but no one really feels like it is just what you just a name, it’s like clothes that you put on, you know, and some clothes feel comfortable, and some don’t took discover that people actually felt because we know, you know, sex, you know, is, is biology, but gender is not, you know, it’s it’s it’s inner social construct. And so to realize that people didn’t feel that, Oh, this is just a name, it doesn’t really fit me. But there were people who actually felt like they identified with that name, like the concepts and the aspects of being that person and the body and all of those things. When I realized that, that you’re supposed I guess it’s you, then it’s supposed to kind of gel, you know, and when it didn’t, I was like, Oh, it was just really eye opening. So I think that just there’s a lot of things about the way that we think that we’re in order virtue that you don’t realize there’s very few people that I know on the spectrum or even people who are not on the spectrum, but you know, who are neurodivergent who haven’t come to kind of some understanding of, you know, maybe their gender identity or sexuality and that’s even if they are, you know, identify as cisgender or as heterosexual it’s, you know, it’s not necessarily about being queer, but it’s just basically realizing that the way we experience, describe and view these things differ from that of the general population.
Debbie Reber 33:04
Yeah, such a great description of that. Thank you. And now a quick break for a word from our sponsor. bracing for a challenging school year, Linda mood Bell learning centers can help your child catch up and stay on track, no matter what they teach students how to read, comprehend and do math to their potential instruction is individualized one to one and proven effective for students with challenges that affect learning, including students with dyslexia. Right now is a great time to get your child the help they need. The learn more, save more discount applies to any type of instruction in person or online. Get More information at Linda mood bell.com slash tilt. That’s Linda mood Bell, comm slash tilt. And now back to the show. This is a big question, but I don’t want to not address this in this conversation. But I know that a big part of your work is intersectional justice. I watched a talk he gave at the UN which I’m going to have a link to in the show notes on the panel for women and girls with autism from 2019. And you described the late diagnosis for children of color and for women as being kind of a perfect storm for catastrophe. And so knowing who the audience is here, this is made up of parents and caregivers and educators who really want to be a part of this paradigm shift this neuro divergent, you know, revolution movement. Can you talk about how we can be a part of moving this forward and specifically related to this intersectionality piece being black and autistic and all that goes with that?
Morenike Giwa Onaiwu 34:55
Yes, I do. And so I feel like and I’m glad that you mentioned that because Sometimes not sometimes a lot of the time, you know, when you know these things are brought up, people were like, well, we’re talking about autism or ADHD or we’re talking about giftedness or this or that, why Why are you bringing you know, why are you talking about racial issues? Not that that’s not important, but what does it have to do with this? or Why do you talk about gender. And it’s really because I think a lot of people don’t understand that they’re interwoven for so many of us. And so, a marginalized identity, you know, like a person can be upper middle class, white, cisgender, heterosexual male, you know, that’s supposed to be quote, unquote, kind of like the creme de la creme right? You know, like, you’re supposed to have it easier, even though again, every person can have different circumstances in their life, they couldn’t create hardship and challenges, we all everyone has both privileges and oppressions, no one has just one or the other, if that person if that person is autistic, or has ADHD, so this having a disability, you are living a completely different life than your peer who might have all of those other characteristics that you have, but they’re non disabled, like every single thing when the world is now been made completely different for you. And it’s like a layer has been draped over you, that isn’t on other people that they don’t have. And the more marginalized identities that you have, the more layers that you have, maybe cloaking your vision or obscuring your way. And so Dr. Kimberly Crenshaw, who coined the term intersectionality is the you know, scholar and who described an example as being at an intersection and so if you’re at the center and then there’s things traffic coming from every single direction, so north south east and west you can get have an impact, you know, two things at once. So north and east can collide or Western South being or whatever, you don’t know which ones are going to collide, how hard they’re going to hit, which one’s gonna hit you first, they’re all going to hit you, but you were just basically you know, kind of at that center point. And that’s what it is with intersectionality it’s like you can’t it’s never just autism. I mean the part of the reason why I think I went so many years I’m diagnosed is because you know, I’m a non binary woman so I was you know, raised as a sign female at birth so socialized as a girl quote unquote, even my understanding again of ADHD was gendered of how you’re supposed to be an autism was certainly you know, I wasn’t like Rain Man. And I wasn’t like any of these, the quirky Silicon Valley guy or Sheldon or anything, you know, like so, you know, lighted up blue was selected, in large part because of a particular gender that is, you know, diagnosed more. So people who are women and girls are diagnosed far less frequently, they were diagnosed later, less likely to get services, because people are looking for a particular presentation. So if you’re not, if you don’t look like what they expect autism to look like, then everyone’s going to think that it’s something else. So if you were a girl, and you’re obsessed with this band, or you’re obsessed with horses, or whatever, that’s socially acceptable, but maybe it feels less so for someone who was assigned male at birth. And then when you look at the racial piece, there are things in you that are about your characteristics of neuro divergence, that are going to be attributed to behavioral problems, or cultural differences or anything, but what they are, for me, for example, tone of voice, like a lot of autistic people might, you know, it’s hard to have the quote unquote, Goldilocks or whatever, right tone of voice, you’re either like, way too loud, or way too, some of the time, and so but when I got loud, it wasn’t seen, as you know, having difficulty regulating that isn’t, you know, that is one of the characteristics of a disability was, she’s black, they’re loud, they’re ghetto, or whatever, you know, I mean, I’m just putting it out there, some of the movements or I’m stereotyping can be viewed in a particular way, in a negative way, that can be very dangerous. And so a lot of what someone might recognize as a meltdown, or as a self regulation method, or whatever, could be seen as aggressive behavior, or something. And so when you look at the fact that every time you the more intersectional identities that you have, that are marginalized. So the more like if you look at race, gender, and disability, the more that they intersect, the more likely it is that there’s going to be suboptimal outcomes, you’re going to look at the likelihood that that person is going to have the same type of educational attainment as someone who isn’t that race, or isn’t that gender or both, is is different, the likelihood that they’re going to be a homeowner, or they’re going to not be in the criminal justice system, or all of the different, you know, markers, social determinants tend to be at higher risk, because of these things, because of the fact that there are certain things that are misunderstood needs that are unmet for your race already, and then disability on top of that, or your gender and so forth. So it’s really important that we look at all of these things, and not just one so when we’re talking about things related to autism or ADHD, we I think it’s I think it’s irresponsible for us if we don’t look at the fact that Aside from whatever circumstances that we might be facing in our own home or life with our own children, it’s not acceptable that X amount of black and brown children with the same diagnosis are going to have out of school suspension, or are going to be get the wrong diagnosis and not get the proper services or going to be diagnosed late, that’s just not acceptable. You know, even if it doesn’t personally impact us, it’s just not, it’s not something that I think we should be comfortable with. These things may not personally impact us, but they impact our society. And therefore, by default peripherally, they’re impacting us in some way or another. So we should care and ask these questions. And it shouldn’t be, you know, it shouldn’t be someone saying, well, this doesn’t exist. This doesn’t include me or I don’t understand this, or I don’t see myself in this it, you know, it shouldn’t be the person who shouldn’t have to do that. Those of us who are around should be able to look and see what’s, what gaps are there, what’s missing, what’s not being addressed, what’s not being mentioned here, and not wait for someone to be left out. Before we call attention to what I tried to learn more about it or care more about it and talk about it.
Debbie Reber 41:05
So good. Thank you so much for sharing that. And yeah, I couldn’t agree more. No, you know, does it even on this show? We’ve been having a lot more conversations about intersectionality. I definitely feel like I’ve been doing this podcast for almost six years and you know, really been more involved in the neurodiversity movement. And I feel like there is good momentum around richer conversations talking more about intersectionality, talking about the lived experience of many marginalized groups, do you see the momentum in that area,
Morenike Giwa Onaiwu 41:37
I see growth, I feel like it’s getting before I think it wasn’t even a concept that people really spoke about, or even were cognizant of. Now, I think people are talking about it. And they’re asking questions, they’re learning, I feel, in some ways, it’s kind of performance, because it’s like, people don’t want to dig deeper. Being aware of it. It’s like autism awareness is great. But we need acceptance, awareness, just know something exists. But you can hate it, you know, like, the KKK knows I exist, they’re aware of me. And that’s not a comforting feeling, you know, because just because they’re aware of me, doesn’t mean they accept me or like me, or, or anything of that nature. So I think people are becoming more aware. But they, but we need to kind of make more space to amplify the voices of those who are most impacted until to understand where we need to learn and grow where we need to where we need to step back and be quiet and where we need to step forward and provide you know, support and, and just kind of evolve as humans we’re always growing, we’re always learning, you know, as living things, our cells are, you know, or that we’re being new ones are being developed and other ones are being are dying and breaking down and so forth. And our knowledge needs to do the same. You know, we never, we should never be static. And so I think people find it disconcerting to realize that something they thought was one way is a different way or that things have changed or they there’s something problematic about something that they believed or that they knew and, and people feel hurt and judged. And I don’t think that we need to do that. We just need to let it you know, it’s it’s self correcting, that’s what we just need to do is like, acknowledge growth and keep it going. Keep it moving.
Debbie Reber 43:14
Yeah. 100% if it feels uncomfortable, lean into that discomfort, right? That’s a sign that the growth is actually happening. Absolutely. Well, listen, I want to respect your time and wrap this up. First of all, I just want to say thank you for such a wonderful conversation. And listeners, there’s so much more that we could have talked about. I mean, I know, in researching and preparing for this interview, your body of work and the hats that you wear, it’s really on spiring how involved you are and what a leader you are. I would love it if you could just tell listeners, if they want to learn more about your work, what’s the best way for them to do that?
Morenike Giwa Onaiwu 43:54
If you’re on social media, I have to admit that I only use Twitter right now. So like, I feel like I have a tick tock account and all that because my kids do like every second Oh mom, look at this, look at this, look at this, Is this okay? You know, but I don’t, I can only have so much emotional bandwidth to keep up with content. So I am at Morenike, which is for like more Nike and then go on Twitter. I have a LinkedIn page. I don’t really use much of my other social media accounts. They’re just kind of stagnant. They’re like my Instagram and Facebook and just kind of sit there but I do have a website and it’s gomorenike.com. So I like gomorenike.com. And on there, there’s information about how to reach me, I’m involved with a number of different groups. And so I have some of the links to those organizations because there might be something of interest that someone might want there. And then I have a resource page as well, with some general information. One thing that I always like to point people to if they go there, either to my page on the resources section, or they can just find it on their own by googling but there’s a book list by Meghan Ashburn who’s Not An Autism Mom. And the website is notanautismmom.com. And so she runs a book club about, you know, neurodiversity and autism. And she has like more than 100 different books that, you know, collectively members of the book club have suggested that she’s curated this list. And it’s a really neat list. It’s got books for little kids, has got books for adults, pick up books in English and in Spanish and have some, you know, books that are related to certain topics. I just, I just feel like it’s really good. And people can check that list out. So if they, again, it’s linked on my page, we can find it elsewhere. If they just wanted to learn more, find out more resources about neurodivergence, and parenting and all of those things.
Debbie Reber 45:42
Yeah, listeners, definitely check out the resource page. It is very rich, there are a lot of links on there. All kinds of things, PDFs, websites, book suggestions. So that is a great way to learn more as well. All right, well, Morenike, I just want to say thank you so much again, and I know you have a busy full life. I’m gonna let you get back to your day. But I just really appreciate everything that you shared with us today. Thank you so much.
Morenike Giwa Onaiwu 46:08
Debbie Reber 46:12
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