Gender Identity & Autism, with Dr. Eileen Crehan of Tufts Univ. | EDB 227

 

Dr. Eileen Crehan discusses the developing of gender identity and sexuality on the autism spectrum

(26 minutes) Dr. Eileen Crehan is an assistant professor at Tufts University and head of the Crehan Lab. She is a clinical psychologist by training, and her areas of study include: neurodevelopmental disorders; autism spectrum disorder; sexuality education; social perception; eye tracking; and the dimensional measurement of psychological symptoms. Her lab focuses on social development and promoting evidence-based practices informed by science and the communities utilizing these practices.

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FULL TRANSCRIPTION


 

DR HACKIE REITMAN (HR):

Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today we’re lucky to have with us all the way from Tufts University up in Massachusetts there, we might be getting a little bit cold. Certainly cold in here is Florida. And we have the master of not only sexuality, not only autism, but all things in between. Dr. Eileen Crehan, welcome.

 

DR EILEEN CREHAN (EC):

Thank you so much for having me, I’m excited.

 

HR:

Thank you so much for coming. You know, there was so much in intersection in the worlds of autism, and neurodiversity, in sexuality. And then to add confusion nowadays, we have gender issues, sexuality, and a lot of the old people like me don’t even know the differences. So we’re glad you’re gonna straighten this all out today.

 

EC:

Great.

 

HR:

First of all, why don’t you introduce yourself properly to our audience?

 

EC:

Sure, yeah. So I’m Eileen Crehan, I am a clinical psychologist by training. I specialize in working with autistic adolescents and adults. And so that was sort of how, you know, in working with that age population, sort of led me into the world of sexuality. So right now, I am an assistant professor at Tufts University where I run a research lab, and we focused on access to health care, and then specifically, understanding sort of gender, sexual orientation and sexuality, education dissemination, for that population. So it’s a fun, fun area study, my favorite thing to talk about,

 

HR:

Well and it comes at a time when things are changing, things are changing rapidly. And I guess as usual, the medical community might even be lagging behind the general population, in learning about new trends and issues in the gender and sexuality areas. And then, of course, superimposed on that we have the increase in incidence in our autism population. Now you came at it through autism first. And then seeing all of it then got into it at this. And I say that correctly. Yeah. What is the biggest single thing you think that people don’t get about? What you do what you specialize in? Yeah, that’s

 

EC:

a good question. I think, historically, people have thought, like they hear the term sex education. And it’s sort of seen as this frivolous thing. And I think that I think that attitude is diminishing, hopefully. But I also think that we’re beginning to realize how untrue that is over 99% of adults, regardless of if they have autism, or not have some sort of romantic or sexual relationship in their lifetime. And there aren’t a ton of experiences that really impact that higher percentage of people. And so when I talk about I called sexuality and relationship education, because it’s academia, so we make everything sound more difficult than it needs to be. But because I really think that, you know, if we’re like, okay, you’re 16. And we’ve got 90 minutes, and we’re going to teach you sex ed, and we’re going to teach you about safety for your body, and other people’s bodies and consent, and how to be in a romantic relationship and advocate for yourself. And then you’re all set. That’s such a silly model, like we would never teach division like that. And more of us are going to use those, those skills when we’re when we’re older. So I think that’s the biggest that it’s like, oh, that’s an extra thing. It’s not an extra thing. The most important thing

 

HR:

I know, I’m the autism community seems to have a high prevalence of such issues, although it’s throughout mankind and all of humanity. Where do you see the intersection of that?

 

EC:

Yeah, I think there’s a couple different ideas that could be sort of driving that. I think one and then this comes I think, from my clinical experience, you got folks were like, why would I conform to these sort of, like, expectations around gender or sexual orientation? Like I know myself, so I’m just going to live my best life. So I think there’s part of that. And I think that you know, the the studies that had been done have been a lot of are really good information about autism and gender identity and sexual orientation has actually been done in other countries where they tend to be better about education sort of discussion about identity. So I’m always interested to hear are interested to sort of study, which is why I’m doing it like, how and if that’s different in the US, because obviously, we have different expectations and models around sex education and how we talk about identity in schools and stuff.

 

HR:

So now let’s say we have parents, in our audience hear at different brains, and they have an adolescent aspie, or someone with autism. And they’re noticing things are a little bit different. They don’t quite know what to do, they’re very uncomfortable. Their kids maybe are asking them questions, their kids are maybe having some gender dysphoria. Um, what do they do? What?

 

EC:

Yeah, I think there’s a couple things, I think the first thing is to sort of differentiate a bit when we talk about gender dysphoria, like from the psychology world, right? We’re looking at this diagnostic label that we’re put on it, which can be very different from like gender exploration in play, which is typical across, you know, again, diagnostic lines. And it’s also pretty normative kids go through a phase of that anyway, I usually recommend start, you know, asking the kids what they know, right? They’re like, Oh, you know, if I, what would happen if I were a boy, right? Or? I know, like, I run into the question before, you know, with a female presenting person, where they’ve been like, Well, you know, I really like math and trucks, and I don’t have a lot of girlfriends. Am I a boy, right? And so didn’t talking about how our societal expectations of gender don’t necessarily mean things about our identity, it could. So I think having that conversation like, you know, why do you ask or what brings that up. And then I think sort of getting back to what you mentioned at the beginning, this, this education of ourselves piece, because not all of us grew up with knowing how to talk about gender identity, we certainly weren’t taught how to do that. And so doing a little bit of a background reading to get some of the terminology, right. I think it helped people feel a lot more comfortable. because there aren’t always good alternatives to get this information for, you know, your teen or your child, for example. So they’re counting on you.

 

HR:

A little bit of hostile territory to because we’re feeling that, well, people should know about this stuff. And yet people don’t know, especially in, you know, my age group…

 

EC:

I think, I think for all of us to be socialized to talk about gender and sexual orientation, in better ways, I think that you know, what we run into, and I think sort of what you’re describing is a lot of the clients that I work with, you know, they’ve had a lot of experiences where they’ve been bullied or teased or something bad. So it was obviously very upsetting then when someone continues to make mistakes about pronouns or something like that. But then on the on the same page, I’ve also found that like, coming from if you’re being, you know, inquisitive, in a in a kind way about it, I think most people are able to be like, oh, here’s, you know, when you knew me before, my name was Tony. And now my name is Laura. And here’s here’s why. Here’s how I would like to be referred to. I think it’s a it’s a growth process for sure.

 

HR:

Let’s jump around a little bit, because I was fascinated learning a little bit about your eye tracking studies. Can you tell us about that?

 

EC:

Yeah. So one of the the research tools that we use in my lab is an eye tracker, where we present images up on the screen, that this camera that watches the teeny tiny movements from your eyes. And the benefits of that are that we can collect information that you might not even realize that you’re responding to, which particularly in social situations can be good, you know, if you’re looking at a group of people, and like what’s most interesting to you, and you tell me with your words that might be different than what you spent the most time looking at. And so I use it to study how we notice other people how we respond to other people. And we’re starting to do we’ve put in a couple of proposals recently to use it as essentially like a sex education and relationship skill tool. So if you’re looking at like a dating app, what’s popping out to you? Does it make a difference if you you know, have autism or don’t have autism, or you have a really restricted interest in something or not to try to capture that perceptual process based on like, a lot of the work that you do is questionnaire based, so just using a different method.

 

HR:

Yeah, we’re — we’ve just started a research pillar here at different brains, where our neuro distinct trainees are putting out some questionnaires where our first papers are on the effect that Coronavirus has had on people with autism, and then also a separate one with ADHD. Which brings you to another another aspect that you know, none of these things occur in isolation. You know, and you you can’t have autism without having some anxiety, some depression And then, of course, ADHD spreads over everything, and and so on. One of the reasons we started different brains.org was to get the mental health, the neurodevelopmental and the neurological, all under one roof, because it seems like everyone is in different silos. And it seems like your place over there at Tufts encompasses a lot of different disciplines. Could you expound upon that?

 

EC:

Yeah, I think that’s been a pretty lucky aspect of my department actually. So it’s very I’m, I’m in a child study in Human Development Department. I come from I was in clinical, I was a director of a clinic before this. So I was very heavily in the clinical world. And I think part of you know, having that experience in the clinical world is really, no one comes in, they’re like, oh, here’s my one symptom that’s bothering me. And if we could address this, everything would be fine. Right? Like you, you come in with one referral question. And then you take a little trip, and you see what happens. And, and, you know, it’s more of a What do you want to prioritize? As opposed to what’s the one thing? And so I’m really interested in how, you know, things like something like executive functioning, right, that crosses across ADHD and in autism, if we’re considering them, sure, separate things. And so then how do we create supports that are helpful if you have difficulties with that, regardless of whether or not you have a diagnosis? I think, particularly with the adults that I would say not all of them had a diagnosis, they, you know, never had access to it, or they were super verbal, no one really noticed that they were having some challenges, some social communication, but they they’re like, I’m struggling with this. And I’m pretty sure this is what it is. Doesn’t matter, right? If we if you need executive functioning support, should we do that anyway? Yeah, so that’s been a nice aspect of building my lab. And the students I have in there are who are working on these projects are really interested in some of them have neurodiverse profiles themselves, some have siblings who are on the spectrum, and being able to bring their experiences and perspective. So that is a really cool dimension. To our studies, I think.

 

HR:

Back in the 1950s, when I grew up in 50s, and 60s, you know, people didn’t come out of the closet with being gay and so forth. And, I would imagine, these things are very hard to be open about for many, many different reasons. Can you expound upon that a little bit, from your perspective, as a clinician doing research running a clinic?

 

EC:

Yeah, I think, I mean, there’s certainly generational effects, right. So if you grew up in a time where maybe it wasn’t safe to come out of the closet, and then changing that, partway through your life is going to be a big shift, I think knowing like, how to talk about it, and when to come like when to come out. That’s a big moment. For some, you know, some people it’s not as big, but for for most people, like there’s a moment where there’s a, okay, who am I going to tell? Is it safe to tell this person? How do I do that, and that is so intertwined with so many social communication demands? And, you know, taking the perspective of someone else, like, how are they going to respond and things like that? So I think, you know, knowledge would be good. I think, oftentimes, I still run into this when I give talks about gender identity and sexual orientation, especially adults, like, you know, this really describes something that I’ve been experiencing like this, you know, question about my gender, and my, you know, sex. And I didn’t know, there was a word for it, you know, this was the thing that I can sort of explore a little bit. And so I think, like, knowledge and awareness is a really big part of that as well. Which is important. And I I don’t know, I don’t know the exact facts and figures on this. But you would obviously imagine folks who sort of feel on the inside some sort of either gender fluidity or, you know, a sexual orientation that maybe they think their parents aren’t going to be expecting, then that brings with it all sorts of, you know, potential anxiety and depression because you’re worried about it, right? You’ve got something that you want to express and you haven’t or you can’t. And then so then it turns into this, like mental health question when you’re like, Okay, what is it really like anxiety? And that’s just happening on its own? Or is it that there’s part of you that sort of wants to come out and express themselves and it can’t, I think the awareness, knowledge and then generational and then we’ll also have, like, cultural pieces, right? So how acceptable it is to come out in your community. That’s true across diagnoses.

 

HR:

and it’s tough no matter how you slice it. Um, what are you Do you have any feelings about the etiology of gender? Let’s call this just called gender dysphoria or gender confusion. Do you have any feelings of About the etiology of that.

 

EC:

I mean, when you think about like gender, gender identity, whether or not there’s dysphoria with it, I don’t know as much about the etiology part of it, because I’m more on the, how do we connect you with services side? Yeah, so I wouldn’t have a ton to sort of add on that. I mean, there’s certainly a whole host of folks who study that piece, I am really interested in how sort of identity is developed in autism. That’s a study that we’re launching in the next couple of months, actually, where, you know, we’ve been asking adults, you know, tell us about your gender identity and your sexual orientation. And like, when you think you started thinking about your gender identity, and we do have information about the essentially timeline for that in neurotypical populations. But is that the same in autism, and I think that would be a really important part to inform our sex education models, right. And in the US, we teach folks skills generally, later than after they’ve already needed them, which is not a good pattern. And so I think, a general course correction on that would be good, but we don’t really talk about gender identity, and sexual orientation at all. So if we could figure out a little bit of a rough timeline, like when should we start having these conversations? That’s a question I get a lot from parents like when should I introduce the idea of like, different genders and different sexual orientations?

 

HR:

Take us back with you, how you got into your present career and the educational path you took, just as an example for how it unfolded for you.

 

EC:

Yeah. So I’ll do a shout out to my mom. For this part. My plan was to be a music and a math major. And then she convinced me to take abnormal psychology. And then I fell in love with that. So anytime we talk about work, she’s like, remember when you didn’t want to take psych? Alright. So that’s how that started.

 

HR:

Mothers!

 

EC:

They know stuff! They do know. So. So so that was how I got into psychology. And then I was working in a couple of research jobs after college, which were did not end up being related to autism at all. I was doing primate research, and then memory disorders in mice. And like, it was a whole path. But I was learning a lot of research tools. Like I started, I was working on the when I was working with memory disorders, I started to work on eye tracking. And I was like, Oh, this is something I think would be really interesting to use, you know, in a graduate program, started my program was working on an emotion regulation study with kids. And with the inclusion criteria, we were looking for kiddos who had some amount of anxiety, some amount of sort of like withdrawn unusual behaviors, a little bit of aggression. And so we ended up with a fair number of kids with autism. We weren’t specifically recruiting for that, but they met the criteria. And it was just like a population I fell in love with, there was something about, I think, like the logical and sort of literal way that a lot of the kids that I met with operated, that just made sense to me, I can see how you’re coming at this. And so it was a group I really enjoyed working with. And then, as you know, I was training more as a child psychologist, and then realizing that these teens, like, you know, the services Cliff was coming up, and there was nothing that happened after that, like it just everything disappeared. And then so slowly, my patient population got older and older. And then because it’s just really rare that like people who specialize in autistic adults, it’s a pretty small number. And so then it sort of snowballed, I think in into itself. And now, I mean, I do a lot of really likely talking with community groups and self advocacy groups and things like that. So I also think that’s a good thing to look for, in as you’re building your career, find those? Maybe, you know, academic conferences are certainly great for research and things like that, but find other ways to disseminate this information because people need it.

 

HR:

Yeah, I’m thinking the self advocacy is really probably the most underrated thing in all of these entities. Yeah. We like to think here at different brains. We’re building a generation of self advocates that know how to do media know how to write know how to really, really want to do so. In your surveys you’ve been sending out so far. What’s been the biggest finding?

 

EC:

Yeah, so the biggest though, the thing that I’m most excited, not excited about. I’m glad that we found it. I’m disappointed, I guess I would say is we what we asked about nine listed primary topics related to sexuality and relationship learning. And we asked people where they got this information. We asked adults and we asked within without autism We found that for all the topics, about 50% of people said the internet, okay. And then the consulting peers was another sort of the next big bucket, which makes sense. And then it was something like 2% of the time providers. So like psychologists, medical providers, parents, mentors, were consulted, which is just really depressingly low to me, because we do know from studies with neurotypical adolescents that when you ask care providers, parents mentors versus the internet, you’re a little bit more likely to get if not comprehensive information, like more supportive information, obviously, then googling it. And it really hammered home for me like that our that our gap is not that we need more sex ed, or that people on the spectrum want to be relationships, hopefully, sort of accepted, especially for your audience right now. But that, like, we need to disseminate that, in better ways. Like when you talk to med school students, most of them say I’m going to have to talk about sexuality in some capacity, whether I’m working with folks with developmental disabilities or not. And then you ask them, okay, how prepared you feel, they’re like, Oh, really not at all, like the percentages are very low. Because we don’t build that into our training programs. I wasn’t trained in this. I’ve gotten training since. But it wasn’t a part of my programming. So I was, I was exciting that we hit on it, because I feel like that is something that I see. But I was disappointed to see the huge lack of sort of consulting what we would…

 

HR:

So funny to me, what you just said, I could have substituted for sexuality, I could have substituted neuro diversity was we doctors, you know, I’m an MD, we got zero training. I mean, like zero, nothing, and even pediatricians and so forth. And then compounding that is that we, as a society have inadvertently discriminated against adults, because it’s all about the cute little children, while the children turn into adults. We yank everything out, say 18 to 21, get out of here, right? of autism, or whatever it is, you know, you’re in the system for now you’re out of the system, you don’t have any job preparation, you know, the proper education, society has not been educated, how to helpfully deal with you, which hopefully now is changing through employers, as well as the educational system. Now, when you compound that with the sexuality aspect, which you know, then everybody runs for the hills.

 

EC:

Yeah. And it’s — I mean, I’d be interested in your experience, because I think, I mean, this the rate, like our awareness of the rate of autism has changed so rapidly in the past few decades. You know, now it’s for adults, you know, I think it’s like, what around 2%, but the shoot up, like, if you have a busy practice, you and you’re seeing adult, you’ve got just a patient like there’s just no way…

 

HR:

You may not know it, but you see. I say that when I talk to employers, too. There’s no we don’t have any of that here. say, Oh, yeah, come on. Walk around your office secret?

 

EC:

Yes, you do. Yeah,

 

HR:

That’s a neurosci– We’re at a hospital, that guy’s a neurosurgeon. He might be on the spectrum.

 

EC:

Yeah, it’s really it’s been interesting from like, like a colleague side as well, because I was in an Autism Center before. And I’m now in a university. I have a wonderful colleagues, but I definitely people that want to study autism in adults, they’re like, oh, I’ve never met someone on the spectrum. And I’m like, sure you have?

 

HR:

No, I think one of the big, big keys in education is, is going to be the self advocates doing the teaching. Now, what’s the best way for our audience to learn more about you,

 

EC:

you can come find us @CrehanLabs, C r e h, a n, on Instagram and Facebook, or at crehanlab@tufts.edu by email. We do talks or trainings, we try and share a lot of if there are free resources for people. And then we also do most of our studies now online, so it can be people you know, down in Florida or around California or wherever they are. And so and most of our all of our studies that are targeted at adults, have some compensation involved in them, and most of them you can participate from at home. That would be the best way.

 

HR:

Is there anything we have not covered today on lean that you would like to cover?

 

EC:

I think we had the big topics. I mean, I think I think the one message that I like people just to think about is I think for a long time we really especially in the you know medical and psychology worlds we thought about like with gender identity, then there’s there’s problem and there’s strife and it’s this negative thing. And it’s really like the goal is to have people live there. But like fulfilled happiest lives. And it doesn’t just because it was a challenge and not really studied appropriately in previous decades. I don’t think that the space we’re in anymore. So I think it’s more of a positive, optimistic space if we can get that education in place.

 

HR:

Well, Dr. Eileen Crehan of Crehan Labs up there and Tufts University, thank you so much for being with us here today.

 

EC:

Thanks for having me. I can appreciate it.