One of the most urgent ADHD research gaps has to do with ADHD and trans people. We know there are lots of trans folks with ADHD. But when it comes to understanding how best to treat them, it’s a whole different story. That’s why we wanted to talk to someone who knows this experience well. Ivan Hsiao is the founder of Trans Health HQ. He joined this week’s Hyperfocus to share his own diagnosis story and to talk about what we do (and don’t) know about being trans with ADHD.
One of the most urgent ADHD research gaps has to do with ADHD and trans people. We know there are lots of trans folks with ADHD. But when it comes to understanding how best to treat them, it’s a whole different story.
That’s why we wanted to talk to someone who knows this experience well. Ivan Hsiao is the founder of Trans Health HQ. He joined this week’s Hyperfocus to share his own diagnosis story and to talk about what we do (and don’t) know about being trans with ADHD.
For more on this topic:
Timestamps:
(01:26) Ivan’s diagnosis story
(11:18) Trans broken arm syndrome
(13:56) What research is there on ADHD in trans people?
(17:23) How to practice better care
For a transcript and more resources, visit Hyperfocus on Understood.org. You can also email us at hyperfocus@understood.org.
Rae Jacobson: When it comes to research on trans people with ADHD, there's very, very little.
Ivan Hsiao: Because a lot of trans people unfortunately face discrimination at school, in the workplace, or with family. Sometimes it's really hard to get information and feedback from those settings. And so all of this means that some trans people would be less likely to receive a formal ADHD diagnosis or treatment.
Rae: That's my guest on "Hyperfocus" today, Ivan Hsiao.
Ivan: Among community I use any pronouns, and I am the founder and CEO of Transgender Health HQ. And what we do is gender-affirming care navigation for the trans community as well as for health care teams that care for us.
Rae: For trans folks trying to find good information, good care, or community-specific resources, there's not much to go on. And that can lead to some frustrating or just outright bad experiences when it comes to finding treatment.
Ivan deals with this every day in his work, and he's lived it, too. I wanted to talk to Ivan about how public health care professionals like him are helping people navigate this information gap. And I wanted to hear his own story, his own experience, and get his insights on how to improve mental health and ADHD care for the trans community.
I'm Rae Jacobson, and this week on "Hyperfocus," Ivan Hsiao.
Like so many recent ADHD diagnosis stories, Ivan's begins during COVID, when everyone's schedule and job and life and brain got thrown out of whack.
(01:26) Ivan’s diagnosis story
Ivan: During the pandemic, I was working with a EU-based team on an Eastern Standard Time schedule. And so I was able to have all these meetings maybe like starting from like 6:30 or 7 a.m. And then everyone would just sort of sign off around noon that I was working with. And then I was able to have time to cook. So I would like, I'd started eating properly. I had time to exercise in the middle of the day.
And then I was working this like extreme hours schedule as well. But I had all this time then to do all these other activities that I now realize was regulating myself and allowing me to get enough dopamine or energy and like what not to have the executive functioning skills necessary to actually perform well. And so that was when I discovered that there were all these symptoms that were coming up when I was in the office and like just being super overwhelmed.
I think with the masking that it all — they didn't go away entirely, obviously, but I just was able to give myself the accommodations that I had never known that I wanted to ask for. And so in that sense, I think I sort of came to my trans identity and to realizing that I had ADHD in a similar timeline about five years ago.
Rae: That makes so much sense to me too, that like, it wasn't until you had the space to actually hear what quiet sounded like, what comfort felt like, that you could even explore what you needed in any respect.
Ivan: Why I wanted a ADHD diagnosis was that I, in the same way that understanding what nonbinary meant was so, such a relief when I understood that term was because I wanted a way to conceptualize the experiences that I was having and just help me make sense of them and find decision solutions that would help me reach my goals in life in a way that would minimize my suffering in doing so.
Like, we all hustle. I am no stranger to that. I like working hard on things. But at some point, I think I did realize that the less that I was willing to acknowledge that my brain was just a little bit different. The way that I perceive time and the way that I can manage my energy seems a little bit different than other people around me. The sooner that I can actually realize that and address it, probably the more likely that I'm going to get to do all the things I want to do in life.
And so, I think though the underbelly of that sort of relaxation that came with and the relief rather that came with self legibility for both transness and ADHD was that by naming that I was deviating and I say this with quotes from the standards also quotes was, you know, I had to like unlearn this baseline of suffering that I had created for myself that was too high. Like I needed to realize I need to tolerate less.
So, the ADHD diagnosis. The first time that I reached out to do this, I actually shooed my partner at the time out of the room and like locked myself into this room and made an appointment because I was so, I was just so nervous that this person was going to tell me that I had this thing that I like pretty much knew that I had. And that I was gonna have to do something about it.
Because I think I was really ashamed of being different in so many ways. And I was scared of taking medications, in particular stimulants and having done a lot of research about it as, again, somebody who was working in health care who, you know, just had free access to all this clinical literature. Went down a whole rabbit hole, realized it had like cardiac implications and such. And I was competing in triathlons at the time. And so I didn't want this to affect my training and such.
And so I actually think my provider, it was actually such a relief that they also listened to me in that I wanted to see if I could control it with like lifestyle changes and such and gave me some good advice. But when I walked out of that room and I was like, "Oh wow, like I do have this thing." Like it was, like I was sort of excited now I could do something about it. Had these like concrete steps around going back to doing all the things that I knew was helping, exercising, eating in a certain way, etc.
Rae: I love what you said about self legibility. Like you know who you are. You learned to read yourself as a full person, but it takes time to get there. And all of that unlearning you were talking about is not an easy thing to do in any capacity, whether it's the norms that you grew up with, whether it's the way that you're taught to think about your brain and what's good and what's not good and what's allowed and what isn't allowed and who you're supposed to be.
But then you have to do all of that and also exist in the context of the world still, which is like where all of that masking becomes a survival skill.
Ivan: Yeah, and I think at some point we take — that was going back to what I was saying about tolerating too high of a baseline of suffering. You can't just be on that mode forever, right? Like at some point we hit some sort of breaking point where there are too many things. You are juggling too many things.
Rae: About two and a half years had passed since Ivan first went to seek an ADHD diagnosis. Now he was ready to try a medication. So he went to see a psychiatrist again, and the visit, well, I'll just let him tell you.
Ivan: I went to the psychiatrist and this was when I was a little bit farther along in my understanding of my gender. And I was very upfront in my intake and such that I was a trans person, nonbinary, seeking care for my ADHD. And when I went into the appointment, so this appointment lasted about two hours and I would say about an hour and 45 minutes of that was me educating this person on what being trans was.
And what made it a particularly bad experience was that this provider was asking me questions that I didn't know why they were asking it because it didn't seem super relevant to me about wanting to just like try out pharmacological like interventions for my ADHD.
Rae: What type of questions were they asking?
Ivan: So one question that really sticks out was that he asked, "Were you attractive as a child?"
Rae: What?
Ivan: Yeah. He was like, "Alright, were you an attractive girl?" And I was like, "I don't understand why you're asking me this." And he was like, "Just like, like, were you, were you attractive?" I was like, "Well, I modeled so like I guess." And he was like, "Yeah, well attractive girls who like, you know, generally do well in school, like that's like normal that, you know, you were, you know, like that's why people didn't catch it. But..."
And I was like, okay, like I kind of understand that maybe this was, he was like reading, he had read some paper about it and was trying to make a connection or something. But it was just such a jarring, gross thing to ask.
Rae: I'm just gonna, I feel like make this face and if you're listening on audio, it's a horrified face, through this whole story because I just have a sense that this is not even gonna get better from here.
Ivan: Yeah, I just, it was bad. It was, it was all bad. So it was questions like that where I, I didn't understand what the point of that question was and it was, it felt really invasive. There were just like a lot of other questions along that same line.
And I think reflecting back on that, it just feels like the same, like I was trying to get, I was there to get my meds that I knew I needed because I was ready to try it.
Rae: Yeah, you were there for a very specific purpose, which is the reason that someone would go to an appointment like that.
Ivan: I was like, I have, I have tracked my symptoms. I have written them out. Here's like all the symptoms from my early years that I remembered. Here are all the things I remember in school. Here's how it presents in my relationships. Here's how it presents at work. I had written it all out on like an Excel sheet because that was who I am. And somehow this person wanted to know if I was attractive as a girl and whether that contributed to my lack of diagnosis and why I was missed.
Among just like other invasive questions. And so it reminded me of the medical gatekeeping that trans people face for a really long time historically where there were doctors who would assess whether somebody was quote unquote passing. So if somebody wanted to transition medically and present as like the quote unquote opposite gender in a way that a cisgender person would perceive this trans person as like a cis person and that being the standard.
And so there were doctors who were evaluating how attractive a trans woman would be and if they wanted to have a male partner and be in a heterosexual partnership. And so there's just this continuous like reinforcing of these norms and trans people having to perform gender whether or not it was actually what they wanted in order to access care.
And so I sort of felt like in that experience, again, different thing, but I wanted to get my meds. And so I went through this hour and 45 minutes of, you know, answering these questions and also providing very basic context on things like the difference between sex and gender and things like that just so that this person would write me the script that I needed to try something out.
Rae: Let me start by saying, I'm very sorry that happened to you. It's not great. No, it's not great. But I also from what I know and what we've talked about know that this is a common experience for trans people and you had a term you used to describe it, "trans broken arm syndrome."
(11:18) Trans broken arm syndrome
Rae: Could you tell me a little bit more about that?
Ivan: So the trans broken arm syndrome is, it comes from just imagine that a trans person walks into a doctor's office and they have a broken arm. And maybe the doctor's like, "Oh, I see you're trans, and I see that you have a broken arm. Tell me about when you knew you were trans." And the person's like, "I, my arm is broken and I would like for you to fix that." And they're like, "Oh, but are you on hormone therapy? Is that what's causing, you know, your bone density to be like not so great?" And the person's like, "No, just put, just address the arm. Like I'm coming in for my broken arm."
And I think that was what was happening with the second diagnosis where the psychiatrist was going way too deep into the sort of trans experience and not even in like the right ways in and not just sort of giving me what I knew I needed.
So I think maybe we'll leave off with a good experience of what to do, which was, I had a primary care provider and a psychiatrist at Harvard who very much practiced the shared care model where I felt like there was a lot of shared decision-making where they provided good rationale for asking certain questions, just around like, "Oh, I'm just checking to see if there's like an interaction here. Going to see what activities you're doing, sort of how you're doing like relationally, socially. And putting it all together and like, here are some options based on the story that you've told me and what I know about your background."
Rae: So when you say shared care, you mean they were involving you in the care process. They were sharing with you.
Ivan: Yeah, for sure. I think that they really took my opinion into account and sort of rather than practicing this paternalistic model of, "Ah, you know, this is what you need." And I'm going to tell you or even worse like using me as a resource like the previous interaction I had.
Like we understand that there sometimes is just scant research on certain things. But I think I empathize with how clinicians have to make do with being so time poor and also keep up with a bunch of things and also work with no research on this topic.
Rae: It's true. There are huge gaps in ADHD research overall, but one of the biggest and most urgent is the lack of research on trans people with ADHD. I was curious though, what do we know in this space? And does what research there is give us any clue about where we should go next?
(13:56) What research is there on ADHD in trans people?
Ivan: There is a systematic review and a couple of prevalence studies in recent years that have started to articulate the reasons behind the correlation of ADHD and transness and also explore rationale such as minority stress.
So maybe I'll start by setting the stage with the prevalence where there was a two to 13 times increased prevalence of ADHD among the trans community, in particular for children and adolescents, and possibly a 4 to 30% prevalence rate in ADHD for just generally the trans community. So again, gigantic spread.
Rae: That's a big swing, yeah.
Ivan: Yes. So, again, these are the, these are the wide range of studies that we have amongst many populations, many, many caveats here. So much more work that needs to be done. But I think in speaking with a few clinicians and in particular I want to highlight the work of Dr. Ningtzeu who is a psychiatrist trained at UCSF, Columbia, and Cornell.
So, one of the challenges of identifying ADHD in the trans population is that the psychometrics, which are some tools that help measure ADHD symptoms and assessing whether somebody has it or not, tend to under identify AFAB individuals, women, and also trans people.
And also sometimes it's hard to collect the data that's necessary around a patient's background. So for example, because a lot of trans people unfortunately face discrimination at school, in the workplace or with family, sometimes it's really hard to get information and feedback from those settings.
So for example, because a lot of trans people unfortunately face discrimination at school, in the workplace, or with family, sometimes it's really hard to get information and feedback from those settings and assess the impact of ADHD on, for example, employment or a family setting or relationships.
And so all of this means that some trans people would be less likely to receive a formal ADHD diagnosis or treatment. And this phenomenon is just compounded for people who are in the BIPOC community because, you know, similar systemic reasons.
So those are a few key challenges, but I do want to really emphasize the strengths as well of the trans population who have ADHD because I think some characteristics of ADHD that Dr. Zoe was mentioning was creativity and humor and this ability to think outside the box and not necessarily be so constrained by practicality or conventionality.
And I really love this idea of positive impulsivity that sort of allows for initiation of connection that allows people to build really fulfilling, cool social relationships. I just see the trans community online. You know, you take positive chances, you're willing to share your true self with others and you just kind of get things done.
Rae: What Ivan says about the trans community online, how they share experiences, take care of one another, provide advice or tips isn't unique to trans folks. It's a way for groups that aren't getting what they need from big systems like the health care system to care for one another when those systems can't or won't.
But it also underlines the need for clear, research-backed information and providers who understand the communities they serve.
(17:23) How to practice better care
Rae: Even now, despite this dearth of research or understanding, there are plenty of clinicians who want to do better for their patients. And since Ivan is an expert in this area, I asked him for his thoughts. How do you practice better care when there's not much info to work with?
Ivan: The first is to address the challenges in getting a diagnosis and some concrete steps there. So, think having that awareness that ADHD presentations might be a little bit more subtle or being aware of co-occurring conditions that might overshadow an ADHD diagnosis. For example, for depression and anxiety, which unfortunately being trans in this world puts the trans community at a higher elevated risk for this versus the cis population.
I also want to highlight maybe this 2022 study that found that trans people who reported — sorry, people who reported gender diversity had genetic markers that were linked to higher IQ and stronger cognitive abilities, which also would mean that sometimes ADHD would get missed as well. Again, in the high achieving, high accomplishing, yeah, people miss the suffering.
And because these metrics and the collateral from work, from families, etc. is maybe less reliable, self-reporting of ADHD symptoms becomes very, very valuable as well. And there's a 2023 study that elaborates on this. And also lastly to consider autism as well, which seems to have high co-occurrence in trans people with ADHD.
I also want to talk about gender affirming care considerations. The executive functioning challenges that come from having ADHD makes it really difficult sometimes to access gender affirming care. Because if you think about the patient journey of somebody who wants to obtain medical affirmation for like hormone therapy or like vocal surgery or like top surgery or something, that requires just so much paperwork and coordination. It's like a phone call to another person to make an appointment and then...
And so that requires a lot of energy and cognitive bandwidth that a lot of people with ADHD tend to struggle with. And so for clinicians, it could be really useful to consider what additional support is needed to help people access gender affirming care, whether that's medical, surgical, or legal care.
And I think the other thing going back to adherence as well is encouraging trans people who are on hormones to take them on time because low hormone states, it seems, might exacerbate cognitive and psychiatric symptoms. And so, yeah, so encouraging adherence, but again, building that treatment plan with the patient's needs in mind, combining whether that's education, social interventions, lifestyle changes and encouraging pharmacological options where appropriate.
Rae: "Hyperfocus" is made by me, Rae Jacobson, and Cody Nelson.
Our music comes from Blue Dot Sessions. Our research correspondent is Dr. KJ Wynne. Video is produced by Calvin Knie and edited by Alyssa Shea.
Briana Berry is our production director. Neil Drumming is our editorial director. Production support provided by Andrew Rector.
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