Major: Psychology Honours, Minor in GRSJ
Year: 4th
Home Town: Vancouver
For those who are not too familiar, could you further summarize the Research of Methodology at the Intersection of Gender Diversity and Autistic Characteristics?
Yeah, so the aim of my study is to conduct a scoping review of the methodologies and the research designs that clinical researchers use to study the co-occurrence of gender diversity and autism. Gender diversity encompasses identities that are not cis heteronormative, whether that’s being trans, or non-binary, or genderqueer. Autism, meanwhile, is a neurodevelopmental disorder that is usually diagnosed at around two years of age. To study these two topics together, I’m conducting a scoping review, which is comparable to a systematic review. However, rather than having a single narrow focus, I’m more interested in mapping the entire body of research to get a better understanding of its strengths and weaknesses. And there are a lot of methodological issues with this kind of research. So the aim of my review is to call attention to these areas of weakness and make sure that they’re properly addressed so that we can improve the research that comes out of these studies. And ultimately, make sure that the practice guidelines for caring for people who are autistic and trans are just and fair.
In a letter that you shared with us, you wrote “ Most studies are quantitative, with a focus on determining the prevalence of gender dysphoria among autistic people… This pathologizing approach is highly problematic” could you elaborate on this statement? (edited)
If you were to go online, and you look at blogs, or YouTube videos made by autistic trans people, it’s very clear that they have an excellent understanding of why they are the way they are—though of course this is a small group of people who don’t speak for the whole population. But for the most part, the general sentiment expressed by many autistic, non-cisgender people is, “Well, I don’t subscribe to general social norms, so why would I subscribe to gender norms?” And that kind of makes sense in terms of why autistic people might be more likely to be trans. But if you look at the literature, that sort of sentiment is not reflected at all, because there has been so little qualitative research that actually asks people their opinions and their thoughts about being trans and being autistic. A lot of the research focuses on quantifying the prevalence of autism spectrum disorder and gender dysphoria, but what we really need is research that extends past prevalence rates to look at well-being, healthcare, and quality of life factors, which are all really, really important to understand when it comes to ensuring this population’s needs are met.
So would you say there is a sort of neglect in current research on gender diversity among people who are autistic? (edited)
There’s a lot of psychopathologization that goes on in current research, and researchers really like to investigate neurobiological correlates; there are a lot of studies that measure hormone levels or use neuroimaging to better understand how these biological factors are related to both autism and gender dysphoria. A lot of researchers subscribe to the extreme male brain theory, which is the hypothesis that autism occurs in natal females because they’re overexposed to prenatal testosterone in the womb; they sort of carrying this theory over to autism and gender identity research to suggest that exposure to prenatal testosterone could explain both autism and trans identity in natal females who are trans and autistic. In contrast, the trans and gender-nonconforming community is working really hard to assert that gender diversity is not due to biological or psychological deficits. Rather, we believe that gender is a socially-constructed, dynamic, and fluid concept that should not be treated as having biological origins. So, the focus on neurobiology within this research area is really problematic in terms of being at odds with all of the social progress that we’ve made as a trans community.
Have you noticed that other research universities are kind of tackling the same issue and addressing it? Or would you say this is a novel review?
I wouldn’t say it’s novel, but I would say it’s very niche. It’s a very small body of literature; so small, in fact, that I’ve probably read every study in the area—though that’s also kind of part of my job, given that I’m conducting a scoping review. Basically, this research started in 2010, when De Vries and colleagues conducted a study where they measured the incidence of autism spectrum disorder in a cohort of children referred to a gender identity clinic for gender dysphoria. This study found that, among this group of children with gender dysphoria, autism was about ten times more prevalent than in the general population. After that landmark study, a number of other researchers started trying to replicate the same results. The main issue was that they began using highly varied methodologies to measure and assess gender diversity and autism, which really threatened the reliability and replicability of these studies. In some ways, this was understandable because gender diversity is very difficult to measure; it is actually kind of resistant to being measured since you can’t really quantify gender diversity in a way that fully does justice to its nuanced nature. But researchers were intent on conducting quantitative studies, so they pulled together whatever measures they could to try to quantify gender. A lot of those measures didn’t necessarily capture gender diversity as the spectrum it is, and instead treat it as sort of a binary variable, as if it’s a yes-or-no type question, which is also quite problematic.
What inspired your interest in the topic, any classes that helped? Who are some of the mentors that have directed you into this and given you opportunities to explore the topic further?
In the summer before my third year, I began working in the Autism, Stress, and Anxiety Program (ASAP) Lab to conduct a directed study project. My supervisors, Dr. Connor Kerns and Dr. Alana McVey, pretty much gave me free rein to choose my own topics of study. Looking back, I feel extremely grateful to have been granted this freedom especially considering I had no prior research experience at the time—that freedom has definitely been a consistent theme throughout my year and a half working in the ASAP Lab; I am so constantly appreciative of the trusting and supportive environment fostered by my mentors and my labmates. I’m a strong believer in choosing research topics that I have lived experience with; I really think that having personal expertise helps to facilitate a more critical lens that you wouldn’t have otherwise. And so, since I identify as a non-binary person, I wanted to see how I could bring that into the research that I was doing. I ended up coming across this niche line of research that looked at autism and gender diversity in tandem. My original intention for my directed study project was to contribute to this body of literature by quantifying gender variance in one of the ASAP Lab’s longitudinal datasets, which consists of 400 families of autistic young adults who have been sharing their experiences with us since the participants were toddlers. The measure I was going to use is called the Child Behaviour Checklist 6-18, which is an inventory of parent-reported “problem behaviours.” The specific item I was interested in measuring was Item 110, which asks, “Does your child ever wish to be the opposite sex?” I had seen a lot of other studies use this measure, so at first conducting a replication study seemed like a robust contribution that I could make to the literature. However, once I did more research on the measure itself, I began to realize that Item 110 doesn’t actually tell us a whole lot about gender diversity! It’s a categorical item that parents can rate as “Never,” “Sometimes,” or “Often,” which really doesn’t do justice to the concept of the gender spectrum at all. I really did not want to conduct a study that would reinforce harmful and misleading information about gender identity in autistic folks, but I did want to raise awareness about the questionable nature of Item 110. So, although I did see the project through to a poster presentation at MURC, I chose not to analyze or present actual data on the item and instead focused on highlighting the methodological weaknesses I was observing in studies like the one I had planned to do. In the summer, as part of my Quinn Summer Fellowship Award, I began pursuing a new line of research that I hoped would help address some of the problems I was seeing with these quantitative study approaches. Eventually I settled on conducting a scoping review for my fourth-year Honours project, because it seemed like the best way to solve the methodological issues that I was seeing with the research my directed study had exposed me to.
So what I’m hearing is you’ve noticed kind of sort of biases in the Construct validity and measurement abilities. Do you have any suggestions on how you would improve these biases and address them?
First of all, I think more qualitative research needs to be done, especially qualitative research that asks people to describe their experiences and describe their identities, because so much of current research doesn’t take these rich, lived experiences into account. Researchers, even those focused on gender diversity in autism, often don’t actually ask what people’s gender identity is, and instead use proxy measures like Item 110. So, the first step that they could take to improve research in this area is to make sure that when they’re administering quantitative studies, one of the questions is simply, “what is you/your child’s gender identity?” And beyond that, researchers should make sure that survey forms do not limit participants’ gender identity options to just man and woman; it’s incredibly important to include categories such as genderqueer and gender non-conforming, or even an “Other: specify” box. I do understand that providing these options can present more difficulties during data analysis, but I really think it’s the only way that we’re going to actually find accurate answers to questions that tangibly improve trans, autistic people’s lives.
What are some interesting findings from the quality assessment of each study that you are able to share with us?
I think what’s surprising is how unsurprising and repetitive many of the study findings are. The same results tend to appear over and over again; mainly the finding that autistic people are indeed more likely to identify as gender-diverse than the general population. At some point, it feels like we have to say, “Okay, we’ve done enough prevalence studies to prove the relationship exists—let’s move onto novel questions that help us to understand how we can truly meet the biopsychosocial needs of this population.” I think the reason people are so stuck on investigating these same quantitative questions over and over is because, although the direction of the results is almost always the same, the actual prevalence rates are extremely variable, and researchers want to understand why that is. For example, there was one study that used the Autism Spectrum Quotient (AQ) to measure autistic traits in a sample of people with gender dysphoria, finding that about 8% of the sample met the AQ cut-off score for autism. Meanwhile, another study that used the same method found that the prevalence was 28%! However, in both studies, the samples weren’t well-defined in terms of what constituted gender dysphoria, and further, the AQ hasn’t been validated in gender dysphoric populations. So, they’re measuring a poorly-defined population using an invalidated measure, and wondering why their findings are so different. At the end of the day, all we are doing is creating more misleading data that doesn’t accurately represent the population it is aiming to help.
What would you consider to be some of the implications of this faulty measurements and constructs?
There are really, really tangible negative outcomes of inaccurate research on gender diversity and autism; the biggest are probably in terms of barriers to health care. Many transgender, autistic youth aren’t taken seriously, because they’re told that, “Oh, this is just a focused interest stemming from your autism,” and that “it’ll sort itself out and disappear as you mature.” This is a huge barrier to getting gender-affirming health care, and that care is so, so important because it can make the difference between life and death for a lot of trans people. Actually, there has been one qualitative study done where they asked autistic trans youth about their experiences with healthcare stigma, and with navigating life in general. The overwhelming sentiment was that it was very, very difficult to be taken seriously by health care professionals, directly because of the way that current research pathologizes autistic people who claim their transgender or gender nonconforming identities. The participants really expressed how difficult it is to access care that is both gender-affirming and autism-specific; there are not a lot of clinicians who can cater to both.
Do you believe this issue is due to the existing literature or more just societal stigmas?
I think it’s a combination of both. I think psychology researchers who study marginalized populations can sometimes be too scared to actually engage on a human-to-human basis with their participants, and that leads to a lot more quantitative research being done than qualitative. In a lot of ways, it makes sense; qualitative research is a lot of work! It’s subjective work, so you have to conduct really rigorous processes of self-reflection and self-reflexivity to ensure you’re acknowledging your own biases and understanding how your positionality affects your data collection and interpretation. You have to come up with interview questions that are respectful, and be able to interact with people to deliver these questions in a sensitive way. And that’s a lot more difficult than just giving somebody a survey, but it’s also the work that really needs to be done.
Another thing worth mentioning is a lot of the quantitative research that has been done has been retrospective. So generally, they’ll take a selection of clinical chart data that has been taken from a gender identity clinic or an autism-specific clinic, and they’ll conduct analyses of measures that people filled out as part of a general intake procedure. That means the researchers aren’t choosing the measures themselves; they’re just working with what they’ve got. That’s why studies end up using measures like the CBCL, and other measures that are not specific to gender identity, because they don’t actually have access to measures that would be more ideal. So they end up taking these proxy measures that are not quite what they want, but close enough. And I think that’s one of the reasons why the quality of the research is so poor; it’s because they’re not doing gender-specific studies from the beginning. I’m assuming the reason for that is a lack of funding, which is where it gets a bit political. I’m sure it’s very difficult to get funding for research on such a niche topic area, even though it’s also such an important topic area. So, I don’t necessarily blame the researchers themselves for not conducting richer studies; I know that they are really just working with whatever data they can get their hands on, which I suppose is better than no research being conducted at all.