Studies show that transgender and nonbinary people are three to six times more likely to have autism than their cisgender peers. Researchers are still trying to better understand the connection. This week In the Den, Jen visits with occupational therapist Dr. Anne Kirby and Frank Vales, a trans and autistic student, about the intersection of the autism spectrum and gender diversity.
Special Guest: Dr. Anne Kirby
Anne V. Kirby, PhD, OTR/L, is an associate professor in the Department of Occupational and Recreational Therapies at the University of Utah, with an adjunct appointment in the Department of Psychiatry. She received her BS and MS degrees from the University of New Hampshire, and then practiced as an occupational therapist in multiple settings in Washington, DC. She received her PhD in Occupational Science from the University of North Carolina at Chapel Hill in 2015, before becoming a faculty member at the University of Utah. Her research expertise is in sensory processing, the transition to adulthood, and suicide risk and prevention for the autistic community. She is currently leading a K23 award from NIMH using community based participatory research for suicide prevention, in partnership with the Academic Autism Spectrum Partnership in Research and Education (AASPIRE). She serves as a Consultant on the University of Pittsburgh ACE grant.
Special Guest: Frank Vales
Frank Vales (he/him) is a 20-year-old student and artist born and raised in Salt Lake City, Utah. He is studying communication and writing with plans to go into the field of applied linguistics. He is autistic, disabled, and Queer, and is passionate about advocacy and community engagement. He has extensive public speaking experience on the topics of LGBTQ+ youth, mental health, autism acceptance, and suicide prevention. He is particularly interested in the intersection of Queer, neurodivergent, and disabled experiences and identities. In his spare time, he enjoys taking care of his unusual pets, including snakes and exotic cockroaches, and studying Irish Gaelic.
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Studies show that transgender and nonbinary people are three to six times more likely to have autism than their cisgender peers. Researchers are still trying to better understand the connection. This week In the Den, Jen visits with occupational therapist Dr. Anne Kirby and Frank Vales, a trans and autistic student, about the intersection of the autism spectrum and gender diversity.
Special Guest: Dr. Anne Kirby
Anne V. Kirby, PhD, OTR/L, is an associate professor in the Department of Occupational and Recreational Therapies at the University of Utah, with an adjunct appointment in the Department of Psychiatry. She received her BS and MS degrees from the University of New Hampshire, and then practiced as an occupational therapist in multiple settings in Washington, DC. She received her PhD in Occupational Science from the University of North Carolina at Chapel Hill in 2015, before becoming a faculty member at the University of Utah. Her research expertise is in sensory processing, the transition to adulthood, and suicide risk and prevention for the autistic community. She is currently leading a K23 award from NIMH using community based participatory research for suicide prevention, in partnership with the Academic Autism Spectrum Partnership in Research and Education (AASPIRE). She serves as a Consultant on the University of Pittsburgh ACE grant.
Special Guest: Frank Vales
Frank Vales (he/him) is a 20-year-old student and artist born and raised in Salt Lake City, Utah. He is studying communication and writing with plans to go into the field of applied linguistics. He is autistic, disabled, and Queer, and is passionate about advocacy and community engagement. He has extensive public speaking experience on the topics of LGBTQ+ youth, mental health, autism acceptance, and suicide prevention. He is particularly interested in the intersection of Queer, neurodivergent, and disabled experiences and identities. In his spare time, he enjoys taking care of his unusual pets, including snakes and exotic cockroaches, and studying Irish Gaelic.
Links from the show:
In the Den is made possible by generous donors like
Connect with Mama Dragons:
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Donate to this podcast
JEN: Hello and welcome. You are listening to In the Den with Mama Dragons. I’m your host, Jen. This podcast was created out of our desire to walk and talk with you through this journey of raising happy, healthy, and productive LGBTQ humans. We are so happy that you’re here with us.
There is a clear overlap between autism and gender diversity. This link is fascinating to me and we have mentioned it in several of our previous episodes. Today we are going to take a deeper dive into the topic and look at it from two different angles. So we have two different guests. First, we have Frank. Frank is going to talk to us about his personal journey of self-discovery and coming to understand the connection between his autism and his gender identity.
Frank Vails (he/him) is a 20-year-old student and artist born and raised in Salt Lake City, Utah. He is studying communication and writing with plans to go into the field of applied linguistics. He is autistic, disabled, and Queer, and is passionate about advocacy and community engagement. He has extensive public speaking experience on the topics of LGBTQ+ youth, mental health, autism acceptance, and suicide prevention. He is particularly interested in the intersection of Queer, neurodivergent, and disabled experiences and identities. In his spare time, he enjoys taking care of his unusual pets, including snakes and exotic cockroaches, and studying Irish Gaelic. I didn’t even know there were exotic cockroaches. I think they’re all exotic.
Our second guest today is Dr. Anne Kirby. Anne is going to talk to us about the research and scientific angle of what is happening in this realm. Dr. Anne Kirby is an occupational therapist and researcher currently studying suicide prevention needs in high-risk groups including autistic and transgender communities. She works at the University of Utah as an Associate Professor in the Department of Occupational and Recreational Therapies, with an adjunct role in the Department of Psychiatry and Huntsman Mental Health Institute. She is a principal investigator with the Academic Autism Spectrum Partnership in Research and Education (AASPIRE). She currently leads an NIH-funded research project in partnership with autistic community members in AASPIRE about suicide prevention for the autistic community. Welcome to both of you!
ANNE: Thanks for having us.
FRANK: Thank you. Thanks for that introduction.
JEN: I think this conversation is going to be really enlightening for many of our members! I’m hoping to start, Frank, with you. Are you comfortable sharing your personal journey with our listeners?
FRANK: I sure am. Yes. So, thank you so much for that wonderful introduction. And, yes, I have Madagascar Hissing Cockroaches and Cave Cockroaches. They are my little babies. Bugs are one of my special interests. Yes. So I am trans and autistic. It has been a long journey of figuring both of those things out. And I couldn’t have done it without the support and guidance from my mom who is gender nonconforming and also autistic. Starting from the beginning, when I was really little, I received a diagnosis of Post Traumatic Stress Disorder (PTSD). And that made sense considering all of the symptoms I was experiencing, things like intrusive thoughts, repetitive movements, separation anxiety. But there were always things that weren’t quite explained by Post Traumatic Stress. I also received a misdiagnosis of Obsessive Compulsive Disorder (OCD) which I know now to not be true. And these symptoms that made me different, I didn’t fit in with my classmates. I kind of stood out. I’ve always been kind of the weird kid. Where things like needing to have self-stimulatory behaviors or stimming. Wearing my socks inside out because that little seam is the most evil invention.
JEN: That seam is bad.
FRANK: Yeah. It’s horrible. Things like really intense and specific interests. And other sensory needs like being sensitive to light and sound. And struggles with things like math, numbers, understanding time, reading a clock. And we just kind of didn’t know what was going on. Especially since my mom’s autistic traits are so, so similar to my own, that they didn’t notice anything weird.
JEN: Like it just seemed normal.
FRANK: Exactly. Exactly. It didn’t seem like anything was a cause for concern because they’ve experienced the same things. And, just for context, they use any and all pronouns. I tend to use they/them for them.
JEN: That context is helpful. Thank you.
FRANK: Yes. So I kind of went about my childhood just feeling a little weird. I was always able to find a couple friends who I could relate to. But keeping and maintaining relationships was always something that was difficult for me, feeling like a bit of an outsider. And that only got worse when I started to discover my queer identity. Starting in about sixth grade, I realized that I wasn’t straight. And, at about that time in sixth grade, kind of starting middle school, junior high, I think is when a lot of social cliques start to form, especially growing up in Utah and never having been a part of the LDS church, that became a significant factor in my social isolation. I, in addition to being autistic and not knowing it and therefore struggling with a lot of unknown social norms and not being able to participate in the middle school culture in the way I’m expected to. In addition to that, I was queer. So, my options for friends were like the three other queer students.
JEN: Did you have any concepts of gender identity before that or just when you started noticing attraction, then you became aware of your gender?
FRANK: That’s exactly it. As a kid, I just wasn’t really aware of it. I was just who I was. I defined myself more by – and this is still true – my special interests than anything else. I just wasn’t a girl, I was someone who liked to read and I liked horses. That’s still true today. I identify so much more with my interests than like my gender identity. Yeah, I’m like a transmasculine, trans man, gender queer person, but like, really I’m someone who’s really into music. So I only started to develop that concept of gender identity when I started to experience dysphoria. And, for me, dysphoria manifested mostly in body dysmorphia and disordered eating habits. I felt like I wasn’t in control of my body. And the way that I gained control was through controlling my eating and obsessing about my weight. You know, when you’re a 13 year old girl, going to a school in a very wealthy white neighborhood, and you’re in dance class, yeah. Those kind of thought patterns are really encouraged within that culture. Then, I started to question my gender identity when some of my friends started to do the same. I had a friend come out as a trans woman and I was like, “Cool. Wait a minute. That’s an option.”
JEN: I didn’t know that was something you could do.
FRANK: Exactly. Yeah. But then I started to realize that maybe it’s not just my weight that I’m unhappy with. Maybe it’s other aspects of my body. Maybe it’s the secondary sex characteristics. And, at that time, then I started experimenting with a nonbinary gender identity. I started using they/them pronouns. I cut my hair short for the first time in my life which, when I was younger, I was obsessed with my long hair and I said I’d never cut it. So that was a big turning point for me. But it also meant that I didn’t have to deal with the sensory nightmare of brushing my hair. Which – Oh my gosh – I’m sure a lot of other autistic people can relate. That is the worst thing. And that was very affirming for me to start experimenting with my identity and gender identity especially since I was struggling so, so much with my mental health at that time. I’m also bipolar for context. I have bipolar type 2, which I didn’t know at the time. And, at that time, I also experienced my first manic episode. And I didn’t know what that was. So, having very little control over my surroundings, over my mental health, being able to control things like how I dress and the pronouns that I use helped me have a sense of stability which also really helps with my autistic traits. I really thrive on routine and consistency. So I had none of that except for I could choose what clothes I wanted to wear. And that was really an amazing thing for me to have that control over something in my life. And as I learned more about myself, I learned that I’m bipolar and started treating that. And let me tell you, it’s scary when you don’t know what’s happening. But, once you get into a good regime of treatment and management it’s, at this point, just a normal part in my life. I thought more about my gender identity as things started to mellow out a little bit for me. And I realized that nonbinary for me was a stepping stone to my transmasculine identity. And, first of all, I’d like to recognize that that’s not true for every nonbinary person.
JEN: Thank you.
FRANK: Yeah. I have seen that said online towards nonbinary people. Like, “Oh, you’ll just discover that you’re actually just a man someday or actually just a woman.” No. It’s not a phase for everybody. But for me, it was. And it was a really Important “phase” and identity for me to have because it let me explore how to be gender nonconforming, how to dress for myself and not other people, how to reject the ideas of being a girl. And being raised as someone assigned female at birth being raised a girl and also autistic.
JEN: Did you have your autism diagnosis yet, at this point?
FRANK: Yes. I do. I received that at 18.
JEN: I’m sorry. I didn’t mean now. I mean at this part of your narrative, when you’re kind of sorting out your gender.
FRANK: Oh.
JEN: Had you received your diagnosis yet?
FRANK: Nope. Not yet. Not yet. I still didn’t know. I knew I was different. But at this point I had attributed all of my differences to being queer. And some of them certainly were, but most of them were not. Most of it’s autism.
JEN: OK.
FRANK: Yeah. So, “Girl” kind of became my mask, my autistic mask. The ways in which I control and hide my autistic traits in order to better fit in with neurotypical and non-autistic society had been based around how a girl is supposed to behave. And so discovering more of my gender identity let me, in a way before I knew that I was masking my autism, start to unravel that mask because I’m unraveling that prescribed gender identity.
JEN: Like really having to think about what was assigned to you.
FRANK: Yeah. Exactly. Yeah. And once I discovered I was autistic, I was able to unmask to be aware of that mask more in other ways. But even before I knew what that was, before I even knew what the term ‘Masking’ meant, I was still unmasking. I was still learning who I was because so much of my mask was about being a girl.
JEN: So at what point did you consider that your autism and your gender might be sort of related or maybe totally separate but just occurring at the same time.
FRANK: As soon as I realized I was autistic, was when that happened. I realized I was autistic in 2021, mid-COVID. I mean, we’re still mid-COVID, but you know. Kind of the peak of it. And as I started to think about autism, consider that, do more research about it, and then eventually realize, “Oh, yeah. I’m autistic.” And then I did seek a diagnosis which I do have now. I realized how incredibly intertwined with my idea of gender that I don’t understand gender in a way that I think neurotypical people do. For me, it’s just as customizable and personal as the way that you do your hair or what nickname you choose to go by. I completely do not understand the idea of gender roles. I mean, like, I get how they’re implemented, it doesn’t make any sense to me. And that’s a very autistic thing, I think. There are a lot of aspects of society that I just don’t get it. I’ll participate, but I just don’t understand, and that’s certainly one of them. And I, like I mentioned earlier, I define myself much more by my experiences and my interests, especially my autistic special interests, than I do like my explicit gender identity which I am grateful to have my queer identity and to know that now. But it’s like I feel like it’s kind of a necessity to understand who you are to say, I’m a trans man. I’m gender queer. I use he/him pronouns, etc. That explains to others who I am. But, to me, in my mind, I’m someone who really loves animals.
JEN: And collects cockroaches.
FRANK: Yes. Exactly. That’s more who I am.
JEN: Do you feel like either label made it easier or maybe more difficult to understand the other label while you were going through this period of self-discovery?
FRANK: Absolutely, yes. Finding out that I’m autistic made it so much easier to understand my experiences with being gender diverse, being trans. I started to look into being autistic because of, mostly, Instagram. The algorithm fed me stuff from autistic creators. The actually autistic hashtag. I’m like, some of this is suspiciously relatable. Like, maybe I should look into this. And then I did, you know, did my own research and it led to my own conclusions. But, in those same communities, the actually autistic community online, is a lot of trans people, a lot of nonbinary, gender nonconforming, intersex, a lot of people who have different experiences with gender. And that was so incredibly affirming to realize the ways in which I’ve felt different, that I felt weird, both by being autistic and also by being trans and queer converge in that way, that they have that venn diagram overlap and that I felt so alone in this experience for the entirety of my life and then to see literally thousands of people with extremely similar experiences to me, was very affirming. And it helped reaffirm that I’m right, that my experience with gender identity and discovering my neurodivergent identity is valid. That it’s not some weird, kind of “only me” thing, It’s actually a pretty common experience.
JEN: Yeah. Just a normal variation of humanity.
FRANK: Exactly. Exactly. I thought I was a total, complete, one-in-a-million, weirdo. But it turns out I’m one of many weirdos.
JEN: We love the weirdos in our house.
FRANK: Absolutely.
JEN: So, Dr. Kirby, if I turn to you, if we’re going to talk about this overlap and we see it so often in our group – this overlap between autism and gender diversity – can you offer just a really high level definition of how the terms are used in the research and data collection?
ANNE: Sure. So, I think it makes sense to talk about how you get an autism diagnosis. To get an autism diagnosis with the DSM, you have to meet certain criteria. And there’s two main areas that are looked at. So the first one is called Social Communication and Social Interaction. So that can look like differences in things like verbal or nonverbal communication, social interaction, and developing relationships. And then the second area is broadly referred to as Restricted, Repetitive Patterns of Behavior, Interests, or Activities. And this sometimes includes repetitive movements that you might see. Intense interests, you heard Frank mention the term “Special Interest,” that gets used. And preferences for routines and sameness. There’s also a component of different reactions to sensations. And you heard Frank mention that as well. So, could be sensitive to loud sounds or bright lights or maybe really like and seek out intense sensations like maybe vibration or being tightly squeezed. And then across both of those areas, social and restrictive/repetitive, the characteristics need to be present from early childhood. So they can’t be something that just sort of appeared when someone is older. But that doesn’t mean they have to be identified early. Like in Frank’s example, it didn’t get identified until he was 18. But there wasn’t a change. It was things that had always been part of that story. And then, all those things to get a diagnosis, need to impact someone’s functioning. And I’ll just mention two. There are a lot of reasons why it’s hard to get a diagnosis. Certain characteristics, people of certain ages, there’s discrimination and other things like that that can be pervasive in the health care system. So some people have gone down a road of self-identifying as being autistic. And that’s good enough for them to understand what’s going on with them. But, what I talked about is what’s required to get the autism diagnosis.
And then, the way I understand and talk about gender diversity, which I think is a newer area of learning for me that has come about from working with the autistic community for most of my career, is that it includes anyone whose gender does not conform with the sex they were assigned at birth. So, some people who are gender diverse might experience gender dysphoria, and I’m sure all of your listeners are familiar with gender dysphoria. But the distress about that congruence. And so I just mention that because a good bit of the research that has been done on this topic has specifically focused on the overlap between autism and gender dysphoria. So I think we might know less about more broadly overlap with autism and gender diversity and more about the overlap with dysphoria specifically.
JEN: Is that because the studies primarily focus on people who are seeking gender related care? And if you’re gender diverse but you never experience dysphoria, maybe you’re not going to see a doctor.
ANNE: That’s a huge part of it. So definitely a lot of research has come out of gender dysphoria clinics and people seeking treatment for gender dysphoria.
JEN: That makes sense.
ANNE: One of the other issues is that there isn’t good data collection about gender identity at a population level. So, most medical forms, most administrative data collects sex. And so studies that do more population-level research to understand relationships between things, really only have sex assigned at birth typically as a data point. And there’s been some movements to change that, but it’s been a barrier to understand that overlap at a population level.
JEN: So, can you tell us, just at a high level, what the data tells us at this point about the link between autism and gender diversity?
ANNE: Yeah. So it’s interesting. Frank mentioned once he got connected with the online autistic community, seeing all these people that were similar in that way – and we see this with research. Like with a lot of things, the autistic community was bringing this up before there was very much research about it. When you talk with community members, that’s where we’re hearing about it. And there wasn’t any research. And so that’s changed a lot in the last several years. But I just want to point out that we are kind of playing catch up to some degree on our research perspective.
So there’s a few studies I can mention, but they all sort of point to what I would estimate is roughly a four-fold increase in overlap compared with what you’d kind of expect to see. And studies have been done in both directions. So autistic individuals are about four times as likely to have a gender dysphoria diagnosis and vice versa, trans people are about four times as likely to have an autism diagnosis. So studies have kind of looked at it in both directions. For example, there was a study of about 50,000 youth with autism diagnoses in the military health system. and they were all four times more likely to have a gender dysphoria diagnosis than other kids in that same system. And then, similarly here at the University of Utah, I’m part of a study and we’re seeing a four to five times increase in autism diagnosis among people who have a gender dysphoria diagnosis. So, kind of seeing that in both directions. And so, that’s kind of four times increased prevelances.
JEN: Does this link exist with other types of neurodiversity, like ADHD or other things? Or is it just strictly autism?
ANNE: Yeah. That’s a really good question. There’s less research on this but I have seen some evidence of overlap with ADHD and trans or gender nonconforming identities. I’m not aware of research that has looked at other kinds of neurodivergence beyond autism and ADHD. So there’s probably more research needed to understand that. And it’s also important to point out that Autism and ADHD kind of co-occur kind of a lot. So these things aren’t really as clear cut as researchers might hope.
FRANK: One thing I’d like to mention about that real quick . . .
JEN: Yeah.
FRANK: . . . is that there’s also, and I don't have any data right now to back this up. But just from what I’ve seen, a significant overlap between not only LGBTQ+ identity and autistic identity. But also the experience of being disabled, whether that be mentally or physically. I personally have seen so, so many people, myself included, who have a co-occurring syndrome. I personally have Ellos Danlos disorder. And that seems to be a particularly common one within both trans and autistic communities. I’ve also seen a lot about Postural Orthostatic Tachycardia Syndrome (POTS). And other things like IBS and celiac disease. So, I don’t have any data or research at the moment to back that up. But, just anecdotally, the venn diagram seems to be a lot of overlap between queer, autistic, and a physical disability which is just an interesting thing I’ve seen personally as well.
JEN: That’s so interesting.
ANNE: I’m so glad you mentioned that, Frank, because it’s another one of these things where we learn about these things in the community and there’s such a clear need to do research to help understand what the needs are in the community. And when researchers work in their own ivory towers and they’re not engaged with the community, they are really unaware of all of these really important areas that we need to better understand.
JEN: I love that idea of just in the next 20 years, we’re going to know so much more.
So, something that comes up in our groups a lot are questions like, “My child is questioning their gender but we’re not really sure if they understand what’s going on because they’re autistic?” And I’m hoping that you’ll kind of address this idea of the connection, if it’s correlative or causative. Every time I think, then they’re more likely to be right about, instead of less likely to be right. But can you speak to that at all?
ANNE: Yeah. So I think that’s such an important point because I think there is this tendency to not believe autistic people when they say things about their own lives. And I’ll point out that not all autistic people are even verbal communicators. So they may not be speaking. They may be communicating with an alternative communication. They may be typing. They may not yet have access to really clear communication. And none of that means that someone doesn’t know what’s going on with themselves. And, like Frank was saying, it’s confusing. Going through this process, most people don’t just wake up one day and say “I’m trans and I know exactly what’s going on.” It starts out as, “I’m not sure. Things don’t feel right.” And allowing autistic people the same processing time and space and allowing them to explore and learn and talk to people in whatever ways that they may communicate. Allowing that same space, it’s this natural tendency to see someone who has a disability, a diagnosis like autism, and decide that they don’t have the capability to do some things that other people do. And that’s generally problematic. It might look different. They might need more time. They might need more help. But, usually people don’t make this up out of nowhere, right? I know a lot of autistic people who are queer or trans or gender nonconforming. And I know a lot of others who are cisgender. It’s not like everyone’s kind of falling into some kind of universe. I don’t know how to talk about it.
JEN: No. It actually makes a lot of sense, the way you’re describing it.
ANNE: Yeah. The question about whether its correlative or causative, I would say from as far as I know, that’s really unknown. I did some searching online and I have seen some researchers talking about hormone differences that might be kind of suggesting something causative. But, so far, I haven't been convinced by anything. And I found some of what they were saying to be a little offensive. So I’m not quite sure about that. And other people talk about maybe autistic or other neurodivergent people are more likely to identify the ways that they feel different because other differences are magnified. And so it could be an increased awareness. And so in some ways, like in that case, autistic people might be more aware of what’s going on with themselves because they’ve had to explore their differences than someone else.
FRANK: Exactly.
ANNE: Those are some thoughts. I don’t know if Frank has anything.
FRANK: Yeah. I can definitely relate to that. I think I was able to explore and question my gender identity a lot more easily because of my autistic traits, just the way that I comprehend myself and the world and societal norms. I think it made it easier to discover my trans identity and to know what I need. And, yeah, I have no idea if it’s correlative or causative. And I’ve seen the same things. But I do think that neurodivergent people, especially autistic people, if they are gender diverse, if they are trans, they’re more likely to figure that out just from my experiences and from what I’ve seen as well. It’s also really important to recognize that being neurodivergent and being autistic does not prevent somebody from knowing who they are. That regardless of somebody's disability, how they communicate, their support needs, etcetera, they will always know themself better than anybody else. And it’s really important to not infantilize autistic people, to not say, “You couldn’t know that.” Especially for autistic people who do not communicate verbally, who have higher support needs, etc, that we need to take them seriously. Autism is not an inability to understand things. It’s not innocence. It’s not ignorance. I think that’s a really ableist way of thinking about it. So I think we just need to listen to autistic people when they express things about their experience. And it’s pretty natural for that experience to include things like changing your gender identity, identifying with one label and then not, changing your name or pronouns multiple times. That is a very normal experience. And if an autistic person is going through that, changing the way they identify, having that be different over time, that does not invalidate the fact that they are gender diverse, that they are trans. It’s normal for anybody of any neurotype to have to find the right fit for that. So I would just say that’s also not something that invalidates that experience.
JEN: Do either of you know, in order of – I don’t even like the word “Diagnosis” because we’re talking about gender and so much self awareness – but the idea of which comes first. Most of the time, is there a statistical probability that more likely your kid will express to you some gender questioning and eventually get an autism diagnosis, or is it more often the opposite. They get an autism diagnosis and then as they’re exploring that, it leads them to understand their gender identity better.
ANNE: I’ve seen it every which way. Early childhood autism diagnoses we see as young as two approaching three years. And then all the way up through, I know people who have got diagnosed in their 60s. So there’s a full range there. And my understanding is that kids as young as four have a pretty clear sense of their gender, at least they can. And so I think anywhere along the continuum, people can realize they’re trans or gender divergent any time throughout that lifespan. I’ve also interviewed people who really came to understand them both together right around the same time. And you heard Frank mention about masking. And that’s that idea that even if it’s not purposeful, people doing things to help them fit in with their surroundings and survive in their environment. And so I think what I’ve heard from some folks is once they start to realize that they have this mask on, then they can figure out what’s going on with themselves in a number of ways. And so that can include an autism diagnosis or identification and learning about their gender identity. And that can be pretty intertwined. I don’t know if there’s good data on timing like you’re saying. But I know what I’ve seen is every version. I don’t know if you’ve seen anything different.
FRANK: Just everything you’ve said, every which way. I think it depends person-to-person. I think a factor that might influence it is somebody’s assigned gender at birth. I know that, in my personal experience, being assigned female at birth and being really competent with language comprehension, reading and writing, and being able to mask, nobody thought about autism until I thought about it for me because of the ways that I mask and also because of the stereotype is not that girls are autistic. Especially since I’ve been able to communicate verbally very effectively from a young age. I’m a very sarcastic person, etcetera. I think, from what I’ve seen, that experience is relatively common of assigned female at birth people with a similar set of autistic traits to me discovering things about their gender identity first and then autism later simply because of that experience with masking. But I think it could go any direction.
JEN: I think a lot of us tend to assume that everyone’s kind of experiencing what we are. So, if you’re super uncomfortable, you’re like “Everyone’s kind of uncomfortable. But these are the rules that we’re following.”
FRANK: Exactly.
JEN: And there’s so many stereotypes with masking in general. And so many stereotypes about what it means to be autistic. And so many stereotypes about what it means to be male or female. And trying to sort through what is real and what have we piled on people, it just seems really confusing.
FRANK: Oh, yeah.
JEN: It seems really hard to sort through.
FRANK: No kidding.
JEN: I want to start by acknowledging that not all gender nonconforming, nobody’s who’s gender diverse requires mental health support. And autism, also, doesn’t automatically require mental health support. So I just want to get that little disclaimer out of the way. But, if somebody does need mental health support, are there specialists now developing who work in that intersection. Like, if you go to an autistic specialist, are they going to be able to help you with the dysphoria and the discomfort in that realm? Or is this so new that you just kind of have to pick and choose?
ANNE: It’s such a good question. I feel like there are some people maybe starting to develop that expertise. What I’ve seen is that most come at it from one perspective or the other, either being an autism expert and then needing to and seeking out learning more about gender diversity or vice versa. But there’s also, I think about when I’ve talked to providers, there might be someone who’s both autistic and trans, but really what they’re seeking mental health support for is an eating disorder or their trauma around racism. And so really thinking about all the different possible intersections that people may have, it gets complicated. Everyone has a lot of different identities and things going on in their lives. And I think that’s why it’s really important that providers working in related areas get at least some sort of competencies and awareness. If you’re working in a gender dysphoria clinic, knowing about autism. You didn’t go to school for autism. You’re not an autism expert, but to best serve the clients coming into your clinic, you’re going to need to. Sending them to an autism clinic is not going to help their gender dysphoria. And so it really depends on what people are seeking care for. But there’s a clear need for increased awareness. And so I’ve worked with the LGBT affirming therapist guild here in Utah and I’ve talked to them about some of my transgender research. But I always mention autism when I’m there with them because now I want them to have that on their radar as well. And vice versa, when I talk to autism groups, I mention gender diversity and trans needs because I think we need to have fewer silos but people certainly need to have expertise. Not everyone can be an expert in gender dysphoria. Not everyone can be an expert in eating disorders. But people working in an eating disorder clinic might have a client who’s autistic and trans and have an eating disorder. So having those skills and being able to work across these boundaries is super important but difficult. And finding the right provider, I won’t pretend is easy.
JEN: Is there any indication that the need for mental health support is higher when these two communities intersect? Does it double the need for mental health support?
ANNE: That’s such a good question. That’s one of the things we’ve been interested in. So, Frank and I work together on a research project and our research project is focused on an autism and suicide risk. But we’re trying not to stay in that bubble of trying to think about autism on its own. We’re thinking about the intersection of autistic people can also be gender diverse, can also experience racism, can also have other mental health conditions, like we mentioned eating disorders and bipolar. And we’re trying to think about all of these things because we know, for example with suicide, we know the trans community is at increased risk. And we know the autistic community is at increased risk. Whether or not they’re at double, I don’t think we have exactly the evidence to know that. But, when I’ve interviewed autistic adults and mental health providers, it comes up a lot that there’s a sort of double stigma. There’s a double, two reasons for people around them not to understand them. There's two reasons to believe that they shouldn’t know how to make decisions about their own lives. There’s sort of that double impact, and we don’t know if that doubles their risk exactly. But it certainly is really important to be thinking about.
FRANK: Absolutely. I just want to agree with everything that you said and that whether or not it doubles the risk, like you mentioned, it’s two reasons why somebody might not be believed or accepted. Two reasons why someone might face discrimination or isolation or anything else that increases risk of suicide. And there is a really easy fix for that. Everybody around them, if we are more gender affirming, if we are more affirming of autistic needs, that inherently decreases suicide risk.
JEN: Thank you. We do a lot of suicide prevention work at Mama Dragons. And every time there’s some insight on that, I find it helpful.
I’m going to jump because you mentioned the research that you are both doing right now. And I understand that there’s opportunity or need, even, for some people to sign up. And we will include links for everything that we’re talking about in the show notes. But is there something that you can talk to us about how people can help with this research?
ANNE: Yeah. Absolutely. Thanks. So, over the past year, our project has been doing interviews. So we’re done interviewing autistic adults. But got really great interviews to learn about their experiences. We interviewed mental health providers that work with this population. And those have been great. We still are looking to talk to some more family members about their experiences of seeking mental health support for autistic loved ones and sort of the challenges they see. And we’re doing all of these different groups of interviews because we are working on an education and prevention program. And so we want to know what all these stake holder communities, what kind of information they need to make a difference and help support suicide prevention. If any of your listeners are family members of an autistic person who’s experienced suicidality, we’d love to hear about their family member perspective. And you can go to that link that will be in the show notes. Thanks.
JEN: Perfect. So, if we’re talking to parents, some of their kids are younger. Some of their kids are in their 30s. We never stop parenting, even when our kids would like us to. We just keep hanging in there on the parenting thing. What sorts of things should parents have on their radar to be aware of potentially a different need or additional need if their child iha already expressed or been diagnosed with the other when we’re talking about gender and autism?
ANNE: I think, one thought is if you’ve identified that someone is transgender and they are seeking support for that, that’s really important. If it seems like that’s not addressing all of their needs, maybe they are continuing to have difficulty with relationships, social problems, and maybe some of those restrictive, repetitive patterns of behavior, it's just something to be aware of that autism could be another part of that person’s identity. And really, it’s important, if there’s unaddressed needs. So if someone has identified that they’re trans and they’re getting support and things are going well, then it’s not something someone might need to worry about. But, if there’s problems that they’re facing in their life that this new piece has not totally addressed, then it might be something else to look at. And I think vice versa. When you have someone who’s autistic, just as I hope parents are with any child of any age, if they talk to you about their gender identity, their sexual orientation, that you’re open to that and I think Frank and I both mentioned this tendency towards not believing, not trusting, invalidating. And I think trying to avoid that and trust the person in your life whether they’re autistic or not and give them the space to explore that.
JEN: So I’m not sure which one of you is better poised to address this question. But I’ve recently met several people or come across several people who identify their gender as autigender. I’m not even sure if I’m saying it right because these are typed out conversations. But, that their gender and their autism are so intermixed that the regular labels that we have for gender don’t fit them. But their autism is their gender, even though autism itself is not generally seen as – is this a community word that’s coming up? Is this totally grass-roots from individuals? Or is this something that’s been discussed at higher levels and the medical community is diagnosing it? What is this word? Help me understand it.
FRANK: From my understanding, it is pretty much exclusively used by the community. I’ve always pronounced it audi, kind of like the car, Audi-gender.
JEN: We’re going to defer to you, then because that’s probably right.
FRANK: I’ve only ever seen it typed, either. But I think, for the most part, it’s used by the community. But it’s cool. I think it is a wonderful thing that people are willing to explore the concept of gender outside of standard labels. And I think, from my experience, it is much more common to see autistic people identifying with non-standard identity labels. Be that auti-gender, the feeling that your gender identity is inseparable from your autistic experiences. Aside from that, there are so many other interesting and new ways of identifying oneself that I see decently, commonly used in the autistic community. An example of that would be xenogenders, genders that are exactly what it sounds like, xeno genders. They are new identities and labels created to define people’s unique experiences with gender that cannot be adequately summed up with the vocabulary that we already have. One that particularly spoke to me, I found it online one day, was rain-gender, the feeling that your gender identity is what it’s like to be outside in the rain or the smell of rain. And that’s so beautiful and I think autistic people are more likely to find identity in those, in that non-standard vocabulary, in those non-standard ways because we have a “Non-standard” brain, a different way of thinking about things like identity and gender experience. And related to that, I’ve also seen a lot of autistic people who use neopronouns, pronouns aside from he, she or they, to identify themselves, describe themselves. I am among one of them. I will use any neopronouns if somebody wants to use them for me because I just think it’s cool. Linguistics is one of my special interests and so I really appreciate it when people want to mess with that and be creative with it. And my pronouns are he/him, but, I don’t know, if somebody wants to use Xe/Xer, that’s equally as affirming because it’s just so neat to see that type of creativity when it comes to both identity and language. And I see it so much more within autistic people than non-autistic people. So auti-gender and other xenogenders and nonstandard ways of identifying oneself, I think you’re much more likely to see that among the autistic community. And I’m not entirely sure why. I think most of it comes down to, one, already feeling weird and different so you might as well be really weird, really different.
JEN: Embrace it.
FRANK: Exactly. And also the ways in which autistic brains think differently and approach things like identity differently.
JEN: That was so comprehensive. I feel like I learned so much more than I even expected to. Thank you.
FRANK: Awesome.
JEN: That was actually really genius. I loved every part of that.
Before we end, can I ask each of you to offer some sort of a parting thought. Something that you really want parents to understand if they’re attempting to be supportive and affirming, any loved one that finds themselves in this intersection. And they might have ten more intersections to add, but in this specific one, do you have some thoughts to inspire our parents?
ANNE: Yeah. To me, the most important things really come down to listening and validation. So, you might not know everything yet about autism or about trans or gender nonconforming identities. But you can learn. And along the way, you can listen to your loved ones and believe what they tell you about themselves. And those to me, are the starting places. And I think, from there, taking an individualized approach to what is most appropriate for them.
FRANK: Absolutely.
JEN: Fantastic. How about you, Frank?
FRANK: Yes. I agree with all of that. I think the most important thing to do is be willing to listen, to believe what they have to say, and to ask questions and be honest about what you don’t know. I know if you know nothing about transgender experiences or nothing about autistic experiences, or very little, oh my gosh, it can feel so intimidating to start learning because there’s so much to learn. As an autistic trans person myself, I definitely felt that. So don’t feel bad if you don’t know things. Be willing to do your own research. Be willing to ask questions. And it’s okay. We’re all learning. It’s just important that you’re honest about that, that you’re always willing to listen because your child always knows themself. And, even if they know that they don’t know themself or know that they’re questioning, they know that. And they know that better than you do. And just be there to believe and to listen. And you won’t know what they don’t tell you. So it's really important to be a trustworthy person so that you can learn together. Personally, my mom discovered that they’re autistic when I discovered I was autistic. They were kind of like, “Oh, man. I do all of those things too. Maybe I should look into it.” If they weren’t willing to believe me or listen to me, they never would’ve found out that important piece of information about themself. So, as cliche as it sounds, it’s a journey. But it really is.
JEN: I want to thank both of you so much for coming, for donating an hour to share your experience and your passion and your wisdom with all of us. We appreciate it greatly.
FRANK: Thank you so much. Thank you for having me. This was wonderful.
ANNE: Thanks.
JEN: Thanks so much for joining us here in the den. If you enjoyed this episode, please share it with your friends. We’d also love it if you could take a minute to leave us a positive rating and review on whatever platform you’re listening to us on. Good reviews make us more visible and help us reach more folks who could benefit from listening. But, review or not, we’re glad you’re here. For more information on Mama Dragons and the podcast, you can visit our website at mamdragons.org or follow us on Instagram or Facebook. And if you’d like to help Mama Dragons in our mission to support, educate, and empower the parents of LGBTQ children, donate at mamadragons.org or click the donate link in the show notes.