We recently talked with Dr. Meng-Chuan Lai, current INSAR Science Chair and a researcher and clinician who focuses on understanding and improving the mental health and wellbeing of autistic and other neurodivergent people, across sexes and genders, as well as their supporting families and developing context-focused support for autistic people. Dr. Lai discussed the overlap of mental health and autism, the evidence-backed tendency of autistic people to be LGBT+, and much more.
Thinking Person’s Guide to Autism (TPGA): I appreciate your being willing to talk with us about your research. Could you tell us a little bit about yourself?
Dr. Meng-Chuan Lai. I’m a child psychiatrist and scientist, currently in Toronto. I work in a hospital and research institute called the Centre for Addiction and Mental Health. I’m also a faculty at the Department of Psychiatry with the University of Toronto.
I was born and raised and trained as a clinician in Taiwan until about age 29, and then I went to the UK for research. Then I maintained my affiliations as a what we call honorary visiting fellow with the University of Cambridge in the UK, where I did my research. I’m also an adjunct attending psychiatrist and associate professor with the National Taiwan University Hospital.
TPGA: Having a positive effect on three continents. That’s fantastic.
Dr. Lai: I’m affiliated with different people around. [chuckles]
TPGA: I wanted to talk to you specifically because the overlap of mental health and autism can be muddy and misunderstood. I was wondering if you could help us understand some of the issues that are involved. For instance, you have said that mental health conditions tend to co-occur with greater frequency in autistic people. Does your research show any indication why that might be?
Dr. Lai: That’s a really great point. I think the data that we have, it comes from different sources. For example, from what people call epidemiological, registry-based data, or clinical database, I think all points to the observation, as you said, that the rates of the diagnosis across multiple mental health conditions, all the way from anxiety, depression to even what people call severe mental illnesses, psychosis, bipolar, substance use, are higher on average for autistic population than the general population.
The reason why is definitely multifactorial. I don’t think we have a very clear reason demonstrated by empirical studies, but different studies point to different reasons. For example, I think, just for example, we know autistic kids are more vulnerable to maltreatment at school or in the society and, unfortunately, in some cases, misunderstanding within the family that could also result in some early misunderstanding, even adversity.
We do know, for example, being bullied is a big risk factor for a lot of depression, even suicide risks. We know that’s one clearer possible causal explanation to why some autistic folks can be more vulnerable to anxiety, depression, and social anxiety, for example, because of the difficulties navigating the neurotypical social environment. That’s just one example because autistic people may tend to be vulnerable to this level of environmental adversity that places them more vulnerable. There’s some genetic study actually finding some associations with the broad genetic background of neurodevelopmental conditions and certain mental health conditions.
That spans from depression to psychotic disorders. Again, that’s association. We don’t know exactly what’s the relationship there. There are some specific scenarios. For example, a genetic condition, 22q11.2 deletion is a specific genetic condition that’s highly associated with autism, but also highly associated with psychotic disorders later in life. That’s a unique scenario because you have a genetic change that’s associated with both. I think there are multiple.
TPGA: Okay. Because in most autism scenarios, it’s based not on genetics, but on observation. That is an exception, generally, when you actually can pinpoint a genetic reason, or that’s just the point where we’re at with our knowledge of autism genetics currently.
Dr. Lai: Exactly. Yes. I’m not sure I’m giving helpful information.
TPGA: It is helpful because my understanding and my observation has been that just even in the last 10 to 15 years, the specificity of genetic detection and diagnosis has been fine-tuned to the point where people who weren’t able to have genetic diagnoses 10 years ago are now able to get them, because the research has been improving.
Dr. Lai: I agree. The reason I mentioned that specific example is that we know the genetic background of human beings are really complex to start with, right? There are some unique scenarios that, for example, a genetic change is linked to autism but also linked to other things that could happen later in life. I think that’s one reason justifying certain kind of genetic assessment or understanding for a behaviorally diagnosed condition, intellectual disability, all the way to other type of neurodivergence—because if that provides you information about what to look for and what to screen for later in life, I think that’s really useful.
Psychotic disorder is just one example. Sometimes you have epilepsy, sometimes you have other things, and/or prior issues related to that. This is different from asking purely the questions of what’s the genetic architecture of an autistic person. I think that’s a very different question to address. Also, I think there’s a mismatch between how the environment or contexts can force autistic ways of thinking. That could also cause longer-term issues.
For example, bullying is an extreme example, in a way. It’s a specific context. Let’s say autistic kids may be more likely to experience overwhelm, let’s put it that way, or sensory overload to start with, or social overload. It may or may not lead to the kind of burnout as we talked about for adults or youth, but it’s a chronic stressor that’s happening on a regular basis, and then it’s likely that’s leading to certain downstream mental health effects.
We don’t have a very strong causal evidence for that, but it’s very plausible that if you’re chronically overwhelmed, then you’re more vulnerable to get depressed. That’s the possibility. Anyway, I think that kind of mismatch that’s happening from early in life could also contribute to the heightened possibility of having mental health challenges.
TPGA: That makes sense. Then there’s also the issue that I wanted to ask you about, which is that in a lot of cases, especially with people who are assigned female at birth, they tend to have mental health conditions misdiagnosed or diagnosed instead of their autism. I was wondering if you could comment on what you’ve learned about that, or information you’d like to share about that.
Dr. Lai: That’s definitely one big topic that luckily has gained more attention lately. I think the observation is that first of all, on average, people who are assigned female at birth gets their autism diagnosis later than those assigned male at birth. That’s on average. The spread is actually quite wide. You can get diagnosed by age of 2 all the way to age of 60. The spread is wide, but on average, that’s what people have observed.
Historically, there’s actually a group of AFAB individuals diagnosed early and even earlier, and for the reason that this is like the historically readily recognized autistic assigned females who have intellectual disabilities and other traditionally defined cognitive difficulties, and/or epilepsy. That’s the group with high support needs the twas identified quite early.
We’re talking about kids or young people whose autism is not recognized until later. In this scenario, usually what happens is that the behaviors or experiences, or difficulties are interpreted using another lens first. These other lenses or other diagnoses may or may not be wrong. Sometimes they coexist, but it’s just that it masks the underlying autism. One common example would be anxiety and ADHD, for example. A young girl can actually be showing a lot of inattentiveness, which may also have ADHD as well as autism, but then ADHD is picked up more. Then that’s the kind of lens or label used to understand the kid’s behavior.
Maybe until later, the social difficulties is more prominent than people think about, “Oh, by the way, there’s something more than ADHD that’s not explained.” That’s one example. Anxiety, similarly. Social anxiety and autism can be, in clinician’s language, a differential diagnosis, but in many cases they actually coexist. You can certainly have social anxiety, but you can certainly also have you being autistic then you become socially anxious. If everything’s interpreted as socially anxious or shy and without looking deeper, then the diagnosis can come later.
Just one additional point is that actually across the board, I think people find difficulties in social communication or social adaptation, in general, seems to become more salient for AFAB kids from teenage years on, and, understandably, I think there are lots of things happening socially, biologically, and that’s a time window that I think more of this later diagnoses emerge. I think there’s no solid data from this because it does vary a lot. I think clinically and from some clinical databases, it shows that the difficulty seems to be emerging for AFAB autistic individuals, especially during teenage years. That may trigger the final diagnosis.
TPGA: We hear these stories over and over again. The one that sticks with me is autism researcher Kevin Pelphrey. He had the same experience with his daughter. He’s an autism expert, yet didn’t realize his own daughter was autistic because she presented so differently from his son, who was diagnosed at an earlier age. This happens a lot. Do you think that the increased awareness, understanding, acceptance, and participatory research are going to be useful in transforming our ability to accommodate and understand and support people earlier, in your experience?
Dr. Lai: Short answer, yes, and it’s essential. Drawing from my own experiences in research and specifically clinics, what I find most helpful is actually not only providing assessment diagnosis but also thinking together with the youth and the family about, okay, so what to do next. One common thing that we ask is that, “Okay, so what has worked for you?” That’s a very common thing that we all ask as a clinicians, because you have your medical knowledge or professional knowledge in providing suggestion, but it has to be individualized.
The medical terminology is called “shared decision-making.” Basically, that’s actually tailoring or merging the expertise together. To be honest, all the suggestions from a clinical literature are based on what we call a group average. This treatment works for the group who has the label, but if there’s a variability of how much it worked. We have to, say, check with every single person. Has it worked for you, or has it not? Why or why not, and what has worked for you? Then let’s start from there.
To me, that’s exactly participatory in the sense that it is essential in the clinical decision-making and care. There are lots of things already in common in the traditional clinician training and the neurodiversity movement-inspired ideas, but people may not be aware explicitly that that’s exactly what you’re doing. You just need to turn your perspective a little bit and just to do it properly. I guess my point is that the participatory research, or participatory spirit, is actually very easy to adapt for clinicians. It’s not very different, actually. I have to acknowledge. The reason I say that is also because I’m also a child psychiatrist by training, and a child psychiatrist is a very unique kind of doctor, in that we’re not the traditional medical model people because we cannot. A child psychiatrist has to work with the kids, the family, school, and other people.
It’s not like the diagnosis-treat type of model. My training gave me that comfort level to serve multiple roles and be a team member. I believe most of my colleagues in this area also work the same way. That’s the role. I think it’s well suited for the neurodiversity movement-inspired, say, approaches, if you put it that way. That’s, in a way, very different from a very traditionally problem-solve and make a good diagnosis, and treat the diagnosis and the pathophysiology and so on, the traditional medical model. I just want to highlight that part. Not sure if this is answering your question. [chuckles]
TPGA: No, it is. Actually, it’s always interesting to see how just even a small epiphany can change people’s mindsets when they’re coming from an autism and participatory-informed perspective. For instance, my co-editor Carol Greenburg and I recently gave a talk for a peer group in Southern California to train high school students in how to support their neurodivergent peers.
The students had never heard of the double empathy problem. They were asking about social skills and we were saying it’s not really fair or constructive to impose neurotypical social skills on neurodivergent people who don’t think or experience the world that way. You both need to work on understanding each other. That was something you could just see their brains absorb, *poof*. And I wouldn’t know about the concept if it wasn’t for the work of people like Damian Milton, who originated the term “double empathy problem” and is autistic himself and also the parent of an autistic adult.
These concepts are important, and I’m grateful for people like you who are doing this work to bring those practices and understandings into the community, into clinical practice.
I did want to ask you, because of the political climate that we’re experiencing here in the United States, I’m glad that you are using the term “assigned female at birth.” Neutral but politically-weaponized terminology is getting increasingly difficult to use in the United States. So I was wondering if you are protected from those kinds of biases in your work in Canada, or if you’ve had any blowback?
Dr. Lai: It’s very unfortunate. [chuckles] In short, I think in Canada or at least other countries that I’ve worked with, some European countries and some East Asian countries, I don’t think we are so far affected by the order or policy still from the current US administration. We use the term ‘AFAB’ and we continue our EDI. We call EDI, it’s like DEI [Diversity, Equity, and Inclusion], similar kind of work. We continue everything as we think it should happen because we agree with the value of the work, and we think there are things that still need to be done. We’re still working with gender-diverse young people. We don’t shy away from saying that we’re working with them at all.
However, the U.S, is a big driver of many aspects of science and practice, so I can see the impact trickling down to anything related. For example, if we’re collaborating with researchers from the States, then we might have some constraints in terms of what to say and what to do in the publication and so on. That’s unfortunate. I think that’s the best I can say.
TPGA: I’m sorry to hear that.
Dr. Lai: I have had this conversation with my team members. I think people are aware and people are worried about the impact of that, but on the other hand, at least from a academic perspective, let’s say they’re doing research, unfortunately, we do not necessarily have to go to US and publish and disseminate that. There are other places that we can still do that and they can be posted online, people can still watch them. That’s a temporary solution.
TPGA: I’m just distressed because, for instance, one of my favorite things before the pandemic every year was to go to INSAR, the International Meeting for Autism Research, and talk to researchers like yourself and learn more about all this research coming from all over the world. We hadn’t been able to go since 2019, since it was in Montreal. We’re going this year in Seattle, but I think that a lot of people are not coming because of these policies. I’m just so sad because it’s always been such a wonderful experience and I’m worried it’s going to be diminished this year.
Dr. Lai: I’m part of the program committee this year, so I have some access to the numbers. Yes, you’re right. There are some, for example, people who are afraid of coming, if they’re international. They’re not coming for political reasons as well. We do have that [attrition]. We do have a good amount of attendees overall still, so hopefully that we can still gather together, and we have to stand together.
TPGA: I’m still excited about INSAR, but my information is anecdotal, hearing from people I usually see.
Back to more data-oriented topics. Obviously, we’re very supportive of the trans community because there’s so much overlap with autism and being autistic. We get some blowback from people when we talk about things like there’s a large proportion of autistic people greater than the non-autistic population who are trans or assigned female at birth, assigned male at birth. People say, “Where is the data?” I’m interested if you could comment on that.
Dr. Lai: There are two directions of the data that supports the understanding of the higher probability of the co-occurrence. One is that within the trans community, the rates of autism diagnosis seems to be higher than the cis population. The biggest dataset there is it’s a questionnaire-based, quite crude method of measurement, but it’s still large sample. You might know this from Varun Warrier’s 2020 Nature Communications paper, which is a large UK-based but multiple-country dataset showing that for people who identify as trans, there’s higher probability that they also identify as autistic. That’s the large dataset.
There’s actually a meta-analysis by from two years ago, by Aimilia Kallitsounaki, about the rates of autism psych diagnosis across studies comparing trends in cis populations. Their summary number is about, on average, 11% of the trans and gender-diverse population are diagnosed autistic. If you compare that to the general population rate of 1% to 2%, for example, that’s clearly higher. That’s the meta-analysis data.
The other way around, which is within the autistic community, what’s the percentage of people who identify as trans and gender-diverse? There isn’t a meta-analysis done yet. I know some people are working on that. There are two resources that we refer to the most. One is actually the Nederlands Autisme Register data from Jeroen Dewinter from 2017. In their dataset, it’s a questionnaire-based analysis as well. That’s the dataset that shows there’s higher rate of autistic people identifying as non-cisgender compared to the non-autistic population. That’s identification.
There’s also a big dataset using US-based electronic medical records, published two years ago in Pediatrics. They used Electronic Medical Records, or EMR, to look for the association between the autism diagnosis and the gender dysphoria diagnosis, which is a smaller group of people within the trans community.
What they found is also that in autistic young people 9 to 18, I believe, it’s more likely those who have autism diagnosis will also have a gender dysphoria diagnosis compared to those who do not have an autism diagnosis. That’s large-scale electronic medical record data.
TPGA: The last thing I wanted to ask you about was, again, we work really hard on getting information out about autism understanding and acceptance, but since you are working in three different cultures in the UK and in Taiwan and in Canada, and, of course, none of those are monolithic cultures.
I’m wondering if you wanted to comment on how, a lot of times people think it’s enough to just go into a different culture and simply translate US autism materials into the local languages, but we know that’s insufficient. I was wondering if you have been doing any work in making autism resources culturally appropriate as well?
Dr. Lai: Yes. That’s a great question. In the field of psychology, for example, people have been debating this a lot. The common practice in the past is as exactly as you said. That we bring an instrument developed, let’s say, in the US and to another country, translate it into the language and test it and then done. People definitely realize that’s not the best way of doing it because you have to adjust it.
There are actually two ways of adjusting it. One is that you bring some instrument there, you make adjustments to that, and then make it more suitable to the local cultures, and then you use the adjusted version to do your research and so on. The other one that’s actually more encouraged but more difficult to do is that you take the idea or you generate something from the ground, bottom-up in the local area, which makes it not directly comparable, but it’s more valid in a way in that area.
Unfortunately, because still in academia or in clinical practice, actually, there’s still lots of– I think we can use communism to represent knowledge that’s brought into other places. Then they cherish a lot about fidelity and things can be comparable, things like that. Let’s say if it’s an instrument, then usually it will be translated and adjusted in the local context, to start with. That’s still the most thing that was done. I’m actually lucky enough to be involved in the translation of ADI-R and ADOS (Autism Diagnostic Interview-Revised and the Autism Diagnostic Observation Schedule) 20 years ago, actually, with my mentor, Susan Gau. The ADI-R and ADOS are commonly used assessment tools traditionally in autism research.
Professor Gau is now vice president of the National Taiwan University Hospital. Her team 20 years ago led that translation. During that translation we did some tweak in terms of colloquial adjustment sort of things, but it’s still mostly the same. I don’t know if you have seen, for example, the ADOS. In the lower age modules, there’s a birthday party thing. You have a birthday party, you pretend the baby has a birthday party, involve the child to sing the birthday song whatsoever.
TPGA: My son was diagnosed with autism at Stanford, and I do remember watching them do that part of the evaluation.
Dr. Lai: Exactly. Think about that. That’s probably not universal in terms of how birthday is celebrated. That’s the kind of thing people are aware of and may adjust, but for fidelity reason, for the tool development, people still stick with the original ones because that’s how it is designed to start with. That’s one thing, but for another example, my colleague, Yu-Ling Chen, who’s translated the PEERS social skills model from UCLA to Taiwan, but they did cultural adaptations. That’s being adjusted to make the examples and things that they talked about suited to the local culture. They are doing translation plus adaptation work into other cultures. I think that’s happening.
There are also quite a few different locally emerging practice and support that’s not necessarily very visible globally, but people just do things from the local context and for obvious reasons. You have to grow things from your cultural context. I think there are definitely different efforts that’s happening in different places. I’m remotely aware and involved historically to some of those. I haven’t done direct work in new adaptation or translating concepts but creating new things directly from local context, but that’s something I’m hoping to do with colleagues in the near future. Just to be more culturally humble and aware of what needs to be adjusted.
TPGA: We’re just about out of time. Is there anything else that I haven’t asked you about that you’d like to talk about?
Lai: In this particular conversation, coming from a clinician and researcher perspective, one thing I learned from research is that there are lots of things that we talked about in research is actually fairly readily translatable to the clinical context. For example, the double empathy problem, as you highlighted, it’s a very smart way of explaining a phenomenon to people to be accessible to people. But a clinician is already in a different position to their clients, and then the clinicians should be very readily aware that the position differences and culture background differences could create barriers, so the clinician’s role is to try to overcome that barrier and try to communicate, understand in effective way. That’s our training.
That’s essentially one of the solutions for the double empathy problem. It’s not one-way. Communication has to be two-way. I think there are lots of things that are readily there, it’s not just talked about in the same way. I feel that there’s actually quite a lot of collaboration that can happen. I really appreciate, for example, Thinking Person’s Guide to Autism is covering these areas—it is a go-to that I suggest for people to look up.
TPGA: Thank you. I really appreciate this conversation, because I think this interview will be answer questions that people ask us frequently, so I’m very grateful to you.
