Advocating for Autism & Women, with Jennifer Cook | Spectrumly Speaking ep. 130
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IN THIS EPISODE:
(AUDIO – 43 minutes) In this episode, hosts Haley Moss and Dr. Lori Butts speak with Jennifer Cook. Jennifer was identified as being on the spectrum in 2011, just after her three children. She is now the author of eight bestselling books –the Asperkids collection, Sisterhood of the Spectrum, and Autism in Heels — which include a Wall Street Journal Bestseller, a Publishers Weekly “Best Book” title winner, and three of BookAuthority’s “Best-Selling” and “Top Autism Books of All Time.” Jennifer is a multi-award-winning international speaker, and has keynoted at the White House and the National Institutes of Health. She sits on the Advisory Board to the Sesame Street Workshop and the Panel of Self Advocates to the Autism Society of America, among others. Most recently, she is the founder of a brand-new venture called belong, a virtual wonderland of enrichment and community, empowering neurodiverse individuals worldwide. Jennifer can also be seen in the new US version of Love on the Spectrum, which is currently streaming on Netflix!
For more about Jennifer:
https://www.jenniferotooleauthor.com/
https://www.facebook.com/jennifercook.author
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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.
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:
HALEY MOSS (HM):
Hello and welcome to this edition of Spectrumly Speaking. I’m Haley Moss, an author, attorney, artists, and I’m autistic. I’m very blessed to get to share the Spectrumly Speaking stage, or podcast for that matter with a fantastic co host, who now it’s her turn to introduce yourself…
DR LORI BUTTS (LB):
Good morning. I’m Dr. Lori Butts. I’m a psychologist and an attorney.
HM:
How are you doing?
LB:
Good, how are you?
HM:
I am good. So I’m thinking a lot about how it is also, currently, as we’re recording, we’re talking a lot about mental health around here. And I think that’s maybe because that’s where my brain is today. And I think that’s so great. And it makes me so happy to think about that we are attempting to care a little bit more than usual. And why that feels important right now.
LB:
It is important, I think, you know, the, just like any situation, as long as stigma gets out of the way, and then people access care more, and they’re not ashamed to reach out and get help. That’s really important to break that barrier.
HM:
Absolutely. And I do wonder, and I’m sure some of our followers and listeners might have some feelings on this. If they have similar feelings about mental health awareness month, as so many of us do about autism acceptance on
LB:
Oh, I’m sure. It makes you really busy. And you’ve got so many things to do and obligations.
HM:
I am just glad that at least here at Spectrumly we celebrate mental health and things
LB:
all year long. Yes, we do. We absolutely do.
HM:
I regularly do look back on those episodes that we’ve done together, where we talked about things like self care and burnout. And I’m like, Oh my gosh, I think I need to go revisit those this week.
LB:
It’s always important to remember every day just not just not the months, every day, take care of yourself a little bit.
HM:
Yes. And I also do see that having these conversations is always a huge part. So I’ve been saying this for the last couple years is I genuinely look forward to the days that we record spectrum. And there’s something that keeps me going sometimes even though I do find that scheduling for us. I think sometimes it’s a little bit of a doozy.
LB:
Right.
HM:
And one of the big reasons that I love spectrally in it, I feel it feels like something that’s good for my mental health as well, is that I get to learn. And I guess and I feel so blessed to have these little chances to get to learn from amazing human beings every couple of weeks or a week or however often it is that we’re around.
LB:
Yeah, we really get to meet some amazing people. And today is no exception. That’s for sure.
HM:
Exactly. So are you ready to meet today’s guest?
LB:
I certainly am.
HM:
Today we are welcoming Jennifer Cook, and Jennifer was identified as being on the spectrum in 2011, just after her three children. She is now the author of eight bestselling books –the Asperkids collection, Sisterhood of the Spectrum, and Autism in Heels — which include a Wall Street Journal Bestseller, a Publishers Weekly “Best Book” title winner, and three of BookAuthority’s “Best-Selling” and “Top Autism Books of All Time.” Jennifer is a multi-award-winning international speaker, and has keynoted at the White House and the National Institutes of Health. She sits on the Advisory Board to the Sesame Street Workshop and the Panel of Self Advocates to the Autism Society of America, among others. Most recently, she is the founder of a brand-new venture called belong, a virtual wonderland of enrichment and community, empowering neurodiverse individuals worldwide. Welcome to the show Jennifer.
JENNIFER COOK (JC):
Thank you so much. I appreciate it. I love the dialogue between the two of you. It’s great. It’s so genuine. And that’s a wonderful thing to be part of. So thank you for having me today.
HM:
Absolutely. I think we’re probably more excited to have you than we are to talk to each other because we get to know each other. And we have gotten to know each other pretty well. Last couple of years.
JC:
Absolutely. Absolutely. Haley’s been quoted in a bunch of those books that she just read. So about. So yes, it’s been a long time coming.
HM:
I actually got asked to endorse one of the 10th anniversary editions, I believe, of the secret book of social roles, which is that…
JC:
You’re on the back cover.
HM:
I can’t wait to get my new edition because I love that book. So I guess to get our conversation started, would you feel comfortable sharing with our audience how you became involved in the autism community?
JC:
Yeah, sure. It was completely a fluke. I had no intention of doing any of the things that you just read about. So my kids, like I said, we’re diagnosed. We were all diagnosed back in the day with Asperger’s. Right? So which I always used to say was the worst sounding thing anyway, so autistic sounds a lot better. Oh, Um, but yeah, my kids were diagnosed and I was diagnosed subsequent to them. Basically, I was, you know, every every kid or every parent who’s got kids who are a little bit different, finds themselves going to this therapy and that therapy, and you’re kind of always in this place of ready to be told what you’re doing wrong, you know, you haven’t done enough sensory brakes, you haven’t done it enough, this that or the other thing. And it’s this perpetual feeling of, you know, am I enough. And if something’s gone wrong, it’s my fault. It’s wearing it is a very tiring, tiring experience. But I remember there was this one week where there’s an expression if three people say something to it’s the angels talking to you. Well, I don’t know about that. But all I know is that in one week’s time, I had a psychologist, a psychiatrist, and an OT, say to me that I needed they were they were observing the way I was doing certain things with the kids, whether it was teaching them at home, whether it was interacting with them explaining things to them.
And they said, you know, you really need to start a school. And I thought that was hysterical, because I had three young children, like under the age of seven, I’m really young, I’m going to start a school. Or they said, write a book. And I thought, well, that’s also kind of nice. Sure. But then one girl said to me, psychologists, she said, you know, you really could change the way the world sees and understands people with autism. How do you say no to that part? Like, if that, you know, I remember thinking if that’s actually true, how do I say no. And basically, what it was coming down to was, the way I was interacting with them, I guess, was different. Because I understood innately how they thought they thought, how they why they were doing certain things, without having to ask him and it just made sense, because my brain operated in the same platform. So I sat down six weeks, wrote a book because that’s what you do when you’re autistic. And sent in the manuscript. And this was our common publisher, Jessica Kingsley publishers. So this was a Monday and on Wednesday, I got an email from somebody named Jessica at jkp. Did I have the rest of the book? I did, I sent it and then only only then did I realize as those of us on the spectrum are excellent at getting right to the toenail of the matter. And I missed this entirely, that this Jessica person was, in fact, so Kinsley, to see Yeah. Somehow my manuscript had landed on her desk.
And so by Friday, I had a contract for the book for the first book. Wow, that was in one week’s time. I know. And that is, that doesn’t happen. I’m well aware of the fact that that is not usually, you know, that’s not the typical experience. And before that first book came out, I already had a second book in the works. And that was the Book of Social Rules. First one was Asperkids. And then the second one was the Book of Social Rules. And it just, you know it steamrolled from there. I, I think it sounds like I’m doing a humble brag, but really, it’s complete stupid vacation. Like, how did this all happen? You know, the first talk I ever did was actually overseas. It was in Manchester, England. And I won speaker beer award. It just blew up. And I I attribute that entirely to a history of musical theater growing. Used to be an on stage, I guess, I don’t know. But it’s sort of a really, I would have imagined, like you would experience in law what you’re used to being on a stage essentially a courtroom as a stage too, right?
HM:
Little bit, but hey, I was a the theater kid, too.
JC:
There you go. You know, it pays off. It’s like social skills training right there in front of everybody. It’s great. So yeah, so it just, it took off from there. And I was very fortunate, you know, Jess, Jessica acted as my editor in the beginning, that was amazing. And it really just one thing led to another to another to another to another, and then everything that you just read became so and it was literally all because, you know, because three people said something in a week.
LB:
That’s a phenomenal story.
JC:
I know, right. It doesn’t sound like you could be real.
LB:
Right? Right. And you just went with it. You know, I mean, that’s the best part. Right? That you just kind of just just, you know.
JC:
Yeah, you know, I say that the bravest thing I ever did was submitting that manuscript and the reason for that is and like so many other girls and women on the spectrum, I definitely you know, have managed or have dealt with tried to make adage undealt, with my own overachieving perfectionist kind of tendencies. And so to put myself out there in a way that could have been, quote, unquote, rejected. That was to me looking back on it in my life story. You know, one of the moments where I’ll give myself a little pat on the back, it was definitely it was my bravest moment, I think, or one of my, one of my bravest moments is putting it out there. And as as Haley knows, for sure, you know, when you are? Well, in any creative venture, when you write a book, we’re, you know, we can talk later about this year about the Netflix series you make, or you make a television series, right? Like, whatever it is that your baby, and you put it out there in the world, for others to judge, that’s scary stuff. And, you know, you never, I never, to this day, every time I have, I’m working on a manuscript for Sesame Street right now. And it sounds funny to say manuscript because it’s, you know, child, child’s book is very young, but, but every time I send something to this new editor, you know, I’m, I’m absolutely positive, it’s gonna come back with like, it all sucks. It’s terrible, you know, every single time. So I look back on it, and yeah, absolutely. went with it. But there is that moment where I think we have to give ourselves permission. You’re just talking about mental health, we have to give ourselves permission to take a risk every now and then. And if it hadn’t, if it hadn’t worked out, then that would have been okay to let you know, the accomplishment would have been that, hey, I wrote a book even if nobody published it, you know? And that would have been cool. I don’t know if I would have been able to see that right away. But it certainly would have been the case.
HM:
I think you would have found a home for it anyway. To be quite honest with you.
JC:
Thank you, I appreciate that. I really do. It’s, it’s one of those things where you’re I’m not. I very much ascribe to the Forrest Gump theory of things where it’s a little bit of predetermined and a little bit of choice and all of it to get put together as that box of chocolates, you know, in the, in the feather on the wind, it’s kind of a little bit of it all put together. And so, you know, I, that’s what this seems to me. And it was that everything, everything leading up to I mean, even going back to, you know, days, days gone by BC, as I saved before children. I did graduate work in social work, and in education, but didn’t get to finish either degree, the first one in my graduate program. For social work, my mother was diagnosed with breast cancer, and I really needed to go help take care of her and she’s great, she’s fine. This is going back, like I said, quite some time. And then in education, the degree and or the master’s degree in education, I had to stop because I got pregnant and they were complications, and I had to go on bed rest. So you know, but even putting those two things together, that’s really what this is an intersection of, in so many ways. So it’s, it’s just, I don’t know, like, it’s everything led to this and hopefully, you know, the, or listeners can can feel that in their lives. They’re on a journey. They’re on a path, even if they don’t know where that path is leading. That’s okay. It’s really just a matter of, if you woke up today and you took some breaths, then you want you got it. You know, everyday doesn’t have to be the grandest day that grandest achievement, those moments will happen.
LB:
Switching gears a tiny bit, um, can you talk to our listeners about the trend of mothers being diagnosed after their children are diagnosed?
JC:
Yes. So I think, you know, one of the things that I give a talk based on autism and hills, my memoir, and one of the things I’ll say is how often I’ll be giving a talk back in the days when it was live, you know. And afterwards, I told my daughter, my daughter’s 19. Now she’s come with me sometimes when I’ve been giving talks, and I told her before, watch what happens in the bathrooms afterwards. And that sounds so bizarre to say, right? But I said more, though, will follow me to the bathroom. And she’s thinking, Okay, well, whatever. And lo and behold, I would finish a talk and she and I would start walking away to the ladies room and she turned around, there’s like crowds falling to the bathroom. And what these crowds almost always, it’s this thing, it’s like, ladies rooms are our confessionals. And what will happen is that people will come to me and they’ll say, you know, I’m here for my children, my, my, my clients, my patients, my husband, whatever the case, but mostly it’s my kids, and it’s at but everything you just said resonated about me, you know? And it’s like, every single person thinks it’s this, this immense secret that they are the only one because that’s how they’ve been feeling. But because, you know, it makes it makes so much sense. Look, Hans Asperger who really you know, his his observations are what led to even now what we the Vernet. Killer kind of understanding of the the common understanding of what that constellation of symptoms, if you will looks like when we when we think of autism, right. And he put that together by watching boys. So it only makes sense that boys are going to be the ones who fit that criteria more easily more naturally more often. I mean, it makes perfect sense. If I describing a fruit and I describe it, and I say it’s round and it’s orange, we’re probably gonna think oranges, we’re not gonna think lemons, even though they’re both citrus, you know what I mean? Like, we’re a grapefruit, which is kind of orange in the first place. It just, it makes perfect, perfect sense.
And so it’s not until, you know, what I really did prior to my own diagnosis was that I really took the sort of presentation of autism in boys and unzipped each one and said, okay, not so much looking for this symptom, but what was being achieved by this behavior. And so for instance, like the idea of lining things up, which we know that not all kids on the spectrum do anyway. But idea of lining up trains and toy trucks. Well, I never had trains or toy trucks. So I couldn’t have done that in the first place. But I thought about it, and what would that feel like? And it would feel like, Hmm, a display of something that really mattered to me. And that I could relate to because I could think about oh, my Barbies, I used to set them up in Tableau and take pictures of them. And that was my play, I would either reenact like news stories with my Barbie, which is a little strange, I know. But, or I would set up these Tableau and I would be taking pictures like it was their wedding album. But if you but if you think about it that way, it’s it’s less spontaneous play. And more display, right. And so that made sense. And if I could go through each of the criteria, each of the descriptors, really, and think about, well, what else could achieve that end? So I came up with something I call the checklist checklist. And I think once you present that to women, it’s not surprising that so many of them go, oh, you know, especially look, autism is a genetic thing. We know this, you know, people used to save me, I have three children, it took until the third that had red hair, right? Like me. And people used to be so shocked that one and two didn’t. So I was true, but why would we be shocked, and that what’s on the inside of the head would be any less related to our, to our relatives than what’s on the outside of them.
HM:
That makes a lot of sense. And I think that’s something that actually really feeds well into our next question, because you’ve been writing about autistic kids for a long time, too. And you also, of course, write about women. And how have you seen that understanding and accommodation of autistic women really change? And how can we keep changing things for the better for autistic women?
JC:
Oh, my gosh, it needs to change so desperately, rapidly. How have I seen it change? I think, well, it’s a discussion now. You know, there’s there’s that at least. So my first book about girls and women were four, which was sisterhood on the spectrum. That was 2015. And then the memoir was 2019. And also just now actually came out in paperback this year. So what have I seen change is at least there are discussions about women and girls on the spectrum. That’s a big difference. There weren’t just five years ago, that wasn’t that wasn’t the case. Or if it was, it was primarily young women who had maybe been diagnosed as children. Haley, how old were you when you’re diagnosed?
HM:
I was three.
JC:
Yeah, see? Right.
HM:
I was a late speaker. I think that’s the primary reason…
JC:
That is, that is that is exactly…
HM:
I’m very aware that being a late speaker kind of changes the game.
JC:
It really, really does. And whereas, you know, I was speaking in complete sentences when I was 18 months old. So you know, right. And so you it can be that, obviously, is not the golden, you know, rule kind of thing, right? Like, we know, there’s more to it, but you’re 100% Right, right, Haley, like, I think that if, if girls and women weren’t presenting that way, it wasn’t even a matter of discussion. So what, what, what the the issue that was for me is that so many clinicians and this is one of the reasons I wrote autism in heels is that so many clinicians have you know, the the that again, back to that that male vernacular understanding of what autism looked like I remember with my daughter somebody in neuro psychiatrist saying, she wasn’t weird enough. That was literally the quote, you know, she wasn’t weird enough. And right now we’d vote we all still chi and I for sure fly under the radar. If you don’t know what you’re looking for. Once you know what you’re looking for. We’re high. Here we are. It’s pretty. You know, you can You can see, but I think what’s so desperately important is to make sure that clinicians do better understand what they are looking for when they’re looking for girls and women and how it does differ just a little bit because the results of lives lived, you know, understood you there are epidemic issues with, you know, eating disorder and self harm, eating disorders, self harm, dating violence, marital violence, under employment, major issues that all of which all of which can be, if not prevented, at least supporting the individual much more effectively, throughout her life is going is going to make desperate differences. But unfortunately, when when clinicians don’t really know that portrait, it’s, uh, you know, it. It’s with best intention. I think that that diagnosticians are working with the best intentions, you know, 99% of the time, but if you don’t really understand what it looks like what a mask looks like, right, you don’t know what to look for. It’s got to be missed. So I think that is the number one priority is education.
LB:
Yeah, that’s, that’s really important. And that’s going to take time. Continue to take time.
JC:
Yeah, absolutely. It is. It’s, it’s going to. But and right, we are at least moving in the right direction.
LB:
Yeah, I agree. Again, switching gears once again. Can you tell you you talked about Sesame Street, can you tell us what what’s going on with that your experience with Sesame Street?
JC:
Yes, it’s my favorite thing ever? Because I’m gonna be very honest. You know, it’s pretty heady stuff. Right now I’m actually working with the congressional — oh boy It’s such an acronym — the Congressional directed, congressionally directed medical research fund through Congress, like all these big things that sounds highfalutin. And you know, what? putting words into the mouth of Cookie Monster, and Grover tops, everything. I am well aware of what that honor is. Yeah. So So years ago, the Sesame Street workshop came to Autism Society of America’s national conference, and there was a discussion about they were going to be developing a character who was on the spectrum. And so we had discussions about that. And they revealed at that point that it was going to be a girl that blew me away. I was so excited. I was literally in tears, it was great. And just kind of struck up a good relationship with the, with the woman who was running the entire endeavor. And when, when she came in Julia, who was the character came out, I was so excited just that she existed. I did not my kids were like, seriously, Mom, are you that autistic? Because I completely missed the fact that she had red hair and green eyes, which is what I do. And I was just like, Oh, get, you know, not miss it entirely. But which is just a fluke, I think but but still, you know, I’ll take it if there’s any not. I’ll take it in there. But yeah, so I got to keep working with them. About a year ago, they were sort of wanted to revamp everything they were doing with Julia and really flesh out her story. And so I got to opine on that and be part of their advisory board, which is really exciting, that I get to do that. And then literally last month, I got an email from the publisher that they work with wood, I write their very first book on Julia. So I’m doing that right now. And it is seriously stressful because I’ve never written a children’s book before. And when you can only have 10 to you know, 10 to 20 words per page sort of thing it is, boy, do you have to get it right, you know, you have to really, really get it right. And but it’s so it’s, it’s thrilling. So yeah, it’s gonna be called my friend Julia, or I think it’s Sesame Street book about autism. And that’ll be out I guess next year. So I’m but I’m thrilled to be doing that. That’s like, that’s just giddy stuff.
HM:
Sounds like giddy stuff, which means you have to tell us what else you’re up to. What else are you working on these days? As if you don’t do enough.
JC:
The other the other big thing that’s happening right now is right, the debut of love on the spectrum us which is going to be on Netflix starting in just a couple of days. So on May 18 of this year. And that’s really cool. This show had two immensely wildly successful seasons in Australia, and then was brought to the US and so about a year ago. They connected with me and the way the show works. says it’s 20 Somethings, although there is a 60 something year old in this, this episode is about where this iteration as well, looking to find love, and you know, trying to find love is a hard thing in the world. And navigating dating and intimate relationships is hard for the most socially savvy among us. So you add in anything that’s a little bit of a complicating factor, and why can it be tough? So what, if anyone’s seen the Australian show, there’s a relationship coach, who comes in kind of helps everybody. And in this case, in the US, they’ve brought me in, and that’s really exciting because I get to do all the work on camera. And, and so now it’s somebody who’s actually, you know, on the spectrum as well, which is just really empowering. Because you’ve got, it’s just another way of showing the diversity of the spectrum.
So… but what I love and this was, this was so flattering, but But I thought, you know, what, this is why the show is so good. Ken Clary, who is the director and myself, we were doing an interview just the other day, and, and I was saying about how important it was that they had somebody on the spectrum, he said, but you know, what, it’s more important that we had somebody who was good at their job, and she’s good at her job. And I thought, you know, what, that never even occurred to me and go back to that, like, we don’t even think about ourselves in those terms. And that I thought, just that nailed it for what we as people on the spectrum need to hear is that validation, you know, it’s not just, we don’t just either have going for us or against us that we’re on the spectrum, it’s that we can be good at things. And people see that and, and so that, that felt good, you know, that was a that was a nice moment. But this show is is I am so proud of it. And they just got a five star rating from actually like the Sydney Morning times or something like that. But it was called, they said it’s the best quote, marvelously joyously, human. And that’s what it is. It is just a beautiful, beautiful tribute to to actual love and things go well and I say, like people watching the show are gonna need pom poms because you just want to cheer for everybody on there is it is it is so great and authentic and, like not the bachelor and
HM:
I love I love dating shows. So please, no, no shade on The Bachelor because I know the bachelor. It’s very unrealistic, but I still love it anyway. It’s such a mess, and I wish they would one day cast an autistic bachelor Bachelorette, that would be extremely cool.
JC:
But who knows? Right? Maybe they already have
HM:
They had a contestant — I got to, I got to ask. I got interviewed asking how I felt about when that contestant shared that she was a couple of months ago. I thought that was extremely cool. I’m excited to see how Love on the Spectrum us shakes up in a couple of days. Please like we got to say that because I think you and I think you know how I was a little cautiously optimistic about it. Because sourcing with the women, you mentioned the dating coach on the Australian version. What made me really kind of, I don’t think scheme is really the right word, but it made me kind of scratch my head a little bit is that you had this like neurotypical dating coach teaching autistic people how to act neurotypical with other autistic people. And I was like, I’m sorry, that’s like asking us to do this podcast in a language that isn’t English. Yeah, exactly. You know, and all of us are. All three of us are fluent in English, obviously. And it would be very strange if we just did try recording this and say a different language. Yeah, yeah. We’d all be fumbling.
JC:
It certainly would be. Yeah, you know, exactly. And it’s hard because you’re you are giving advice primarily on initial interactions, right? You’re not they’re giving long term relationship advice, that now I actually got to talk to several of the contestants, contestants on service participants over long periods of time, you know, so then it became more about, you know, maintaining relationships and what goes in, but in the beginning, you know, I remember seeing, you know, the original show and thinking like, do we need to pull out a chair and everything but you know, what I did that with with one of the the participants, and when he pulled out the chair for his date, she said to camera later on how that showed that he was a gentleman, and how much she liked him because of it. So, you know, there you go is something I didn’t expect to actually do. But then I did it and it had a it landed, you know what I mean? So, yeah, but what we really worked on being able to sustain communication, like a conversation back and forth dialogue, that was a big one. Because one of the participants, you know, definitely was much more on the like one sided conversation and so I use some tools to get to work on that. And then Just to practice what it was to actually go to a restaurant and, you know, have a conversation and what can we talk about? And how do we then ask for the bill and just the practical things, you know? So it, yeah, it just and then how to give compliments and why, you know, in when and that it’s okay to do but certain compliments are okay, you know. So also, you know, of course, of course, so much of it ends up on the cutting room floor. Like there’s just no way that you can fit in, you know, hours and hours that go in. But yeah, it’s it was a once Well, hopefully not once in a lifetime experience. Ken said that the other day said, you know, if we get if we get Season Two are you in? I was like, Yep. 100%. So I hope I hope that happens, because boy, was it fun.
HM:
This makes me so incredibly happy for you. And for and for all the subjects and participants that we will get to watch their journeys unfold.
JC:
Yes, yes. And you’ll become so invested. It’s really cool.
HM:
I think that’s fantastic. So how do we stay in touch with you how to folks hit the follow all the amazing stuff that you’re doing? Because there’s so much that we’ve crammed into since we’ve been recording, we still have more to talk about somehow. Like, just in case anyone is running low on time, or people are just like, I need to look?
JC:
I wish that I did a better job keeping like, you are so good with getting everything on social media all the time. And I am I am not as diligent as I as I should be. But but I’m on Instagram. It’s @JenniferCookAuthor, and Facebook, which is also JenniferCookAuthor that makes it easier. And Twitter its advocates at Asper kids. So I am definitely there and my website. You can link to everything there which is just which is Jennifer this just to make things complicated. JenniferOTooleAuthor.com. And that is that is my former last name, but still the website.
HM:
Awesome. You are so cool.
JC:
I try. I try. I’m a big dork, which is, you know, but the fact that I accept my dorkiness I think is what makes me cool.
HM:
I’m a dork too, because I’m just like silently fangirling just a little.
JC:
Well, look who’s talking Miss Talented.
HM:
Let me just have my moment. i Every so often that somebody does come on the show, and I do fangirl and I feel like such a dork because I’m trying to contain it and then trying to appear professional and cool and calm and collected. And then at the same time, like I can’t believe I’m actually just having a conversation with this person who was so cool and accomplished and just, I’m sorry, I have lots of feelings.
JC:
I love lots of feelings. I love that to feelings. And I appreciate that so much.
HM:
We want to talk about intersections of autism advocacy and advocating for women’s rights. I feel like this is a very timely topic right now, given everything that’s going on in the universe. Yes. But politics in the universe aside, I think that when we’re talking about where do we fit in that larger women’s rights conversation? How are we making sure that the autism and autistic advocacy community is more inclusive of all different genders, for that matter, those who essentially are little boys, in the traditional sense of our little I always think of like, how do we get past this idea? And I feel like I still have to say this quite a bit. Because I usually try to make when we talk about girls or women, I usually try to be more expansive because I know there’s so many different people. And I often think about like, Okay, how do we just get past that like cisgender little white boy who flaps his hands and loves trains? I think that’s kind of my, that’s my new thing is how do we just get past that picture?
JC:
Yeah, and you know, what I gotta say, saying this is pretty cool, is that I have now I feel like I have enough qualitative data, of giving my talk on women and girls and that sis men, as well as trans men really feel like and, and trans women really feel like a lot of what I’m saying resonates with them too. So I really love that because it comes becomes more of a human story, a human spectrum, you know.
HM:
It really is.
JC:
Yeah, I love hearing that because that makes me feel like you know, it really is. There is room there is room for everybody especially because the spectrum does tend to be you know, very diverse in like so many ways that that I’ll often say I’m giving you a talk about women and girls except I’m not.
HM:
I started doing that too is I’m like, women and girls aren’t the only ones who mask, thank you very much. It’s just that we’re the ones who seem to be in gender minority for that matter. The people who get most affected by it because there’s plenty of sis boys who mask camouflage and There’s no There’s so many different reasons. It’s just the motivations are different based on things like gender and race 100%. And that’s what I found myself saying more and more like, yes. Because I’m afraid I’m afraid of if I look suspicious when I’m walking, somewhere alone, that somebody’s going to come up to me. Yeah, I’m thinking about things that my sis male friends aren’t thinking about.
JC:
That’s right. And it’s true.
HM:
As some of my motivations, and I know some my friends who are also people of color, they’re thinking about that for different reasons that I am, like, so I guess it’s like, how do we talk about the dozen more not only just an intersectional lens, but I think with gender at kind of the forefront? Because I always feel we’re really just women’s rights. Like, it turns out to affect so many more people than just two we traditionally think of as women. Absolutely, but also includes, of course, our, our trans women or non binary folks who are some who feel that they are somewhere in between, or neither gender of the two binary genders at all. Like we have a lot of folks who I feel like get left out. So how do we advocate for women’s rights and also be inclusive at the same time in the autism community? I think that’s kind of the million dollar question.
JC:
And I think that the answer is a million dollar answer. Right? Like, I think, I think there isn’t one. So a really good one, I think we’re limited even just by things like language, right? Like, I mean, this was how you might go, it’s such a, like, such an artistic thing that I had struggled with, because I’m so I’m a word nerd. And I love like, I like grammar and things like, embarrassing. Yeah, you know, it’s such a silly thing. But when I when when it first became, you know, like a thing to use the pronoun de right for non binary now, I’m, like, super used to it. But at first, I just had a problem with like, using a plural word for a singular person. And like, you know, that was my, like, I need a different word. And I know, there were different words that were thrown around, but they just totally works. And I get it. You know, but like, I think we’re bound by language by the limitations of language, I think we’re bound by the limitations of, you know, that, that we don’t you don’t think about things that your language doesn’t allow for. That’s just been shown globally. And so, you know, right.
HM:
I think about that a lot with English because I know a lot of English is their second language like English, like, You guys only have like one word for love. And I know some folks who are people who speak multiple languages, like we have so many different words for that, or we have words just to explain, like when you’re, I think about the German word, like shouting road, and how people like, are able to have a word that celebrates other people’s misery, essentially, or like, or like a jealousy like that they have actual words for stuff that we can only dream.
JC:
Exactly right. Like, I remember the first concept I had with. So the first time…
HM:
I got excited on the word nerd, too. And when you brought up the singular they thing I was like, How many times do I said, Oh, it looks like somebody dropped their wallet. And you don’t think twice about it. So that’s why I kind of have like, even when we’re referring to a singular person, like, that seems so strange now, when you’re not used to like, but we still do it. Yeah. And now, we actually like, Oh, someone lost her wallet. We’re not like, oh, that person, someone dropped his or her wallet.
JC:
I know. I did. That was in the last book that I in the 10th anniversary edition of the Secret Book of Social Rules. That was one of the things I had to edit because I always had him or her like, exactly, because I wouldn’t say you know, like, yeah, exactly, exactly what I was doing the grammatically correct thing, but that’s not really like the socially, like, you know, like, sensitive thing. And so it was, I did change things entirely. And I’m still just annoyed that there’s no Oxford comma in the book. So you know, whatever. These are the things that, in my mind, the most important in the world, but it sticks in my mind.
HM:
Clearly we just have to have better language and start creating better routines. And I think, especially when it doesn’t make sense, or you’re someone who’s very set in your ways, it’s how do we create routines that’s like, inclusion is, you know, not just the right thing to do. But it’s a practice.
JC:
it is a practice, it is a practice, I like that. I like that a lot.
HM:
Because you’re not always gonna get it right. Sometimes some days are gonna be better than others. And I think that it’s, you still obviously are well intentioned. It’s just I think we have to practice it so that we get it right, that becomes part of our existence, especially for those of us who are set in our ways.
JC:
It becomes just, you know, and I feel very, I feel very lucky, my like, because in the autism community, we really do have a diverse, you know, population so many ways. I feel like I have a lot of people that I know who are either trans or non binary, my cousin is trans. You know, and I feel like because of personal experience, I feel very Blessed that, that I’ve gotten to witness journeys and to just see the bravery that that entails. Because it’s like, I think anything just whether whether it’s gender, or whether it’s autism, or, you know, the world needs a little time to understand and ask questions. And one of the things I feel very strongly about is, you know, language in terms of autism, like, the only I do not, for me, it is not a big deal, whether I’m called a person with autism, an autistic person to whatever, like whatever the specific, you know, I don’t, I don’t take issue with anything, because I want people to feel free to just ask a question. And sometimes I think that people can get lost in the nuances. Like, obviously, language and words carry power, I get that, Oh, for sure. You know, I get that, I get the that some people feel strongly about the word disability, and others don’t feel strongly about the word like, I get those words carry a lot of power and understanding why they matter. matters, right like that. It just does. I think and I think that I want people to be able to have dialogues and be able to not be afraid of asking questions. And you know, not be afraid of stepping on someone’s toes. I think that’s, that’s sort of like, to me, the key to everything is being able to ask questions and get honest answers. I think there’s this thing, and I think it’s in France, where they have the quote, unquote, it’s a human library, where basically you go in and you just sit down. And there are people who are representing all sorts of different experiences in life, and you just sit for 20 minutes, and you just talk to them and you ask any question you want. And I just think like, if we could do that as a, as humanity, I think that we’d be so much, so much better off.
HM:
I love that. I love that idea that we can be so much better off and that we have to not be afraid to ask questions and keep learning from each other. I think that’s a really strong way to end this. And I and you’ve certainly given us things to think about and the questions that we’ve asked, and I don’t, again, everyone knows that I don’t like to speak for Dr. Butts. But sometimes I know that both of us agree that we learn a lot from our guests. Absolutely. So so thank you for giving us something to think about. And please follow all the amazing work that Jennifer Cook is doing. Please visit her website, check out her books. And don’t forget to hopefully tune in to Love on the Spectrum on Netflix in just a couple of days. Depending on and depending on when you might be listening to this it might already be out so be sure to check your cues for the US version, not the Australian version. For the rest of us, be sure to check out differentbrains.org Check out their Twitter and Instagram @DiffBrains. And don’t forget to look for them on Facebook as well. If you’re looking for me, please say hello at HaleyMoss.com Or you can also say hi to me on Facebook, Twitter or Instagram. I will do my best to stay in touch with you all I have been absolutely terrible at monitoring correspondence these days. My apologies.
LB:
I can be found at CFIexperts.com Please be sure to subscribe and rate us on iTunes 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.
