Breaking the mold: embracing neurodiversity in medicine

On this episode of the CMAJ Podcast, Dr. Kirsten Patrick speaks with Dr. Shane Neilson, the author of a CMAJ Encounters article entitled, “Professional stigmatizations.” Dr. Neilson is a physician, writer, and academic, who shares his experiences navigating medical school and practice as a neurodiverse physician with bipolar disorder and autism. 

Dr. Neilson reflects on the challenges he faced during medical school, including a moment when a preceptor told him, "There’s something wrong with you," without offering any support or guidance. He shares how this, along with the pressure to conform to normative expectations in medicine, made his training difficult, especially without any accommodations for neurodiverse students.

Dr. Patrick relates to these struggles, recounting her own experiences of feeling out of place in medical school. Together, they discuss how the culture of medical education at the time did not accommodate students who did not fit the traditional mold.

Dr. Neilson notes that while there are "little teeny, tiny occasional tales of change" happening now, such as program directors becoming more aware of neurodiversity and making small accommodations for students, these changes are still incremental. He expresses hope that this will continue to evolve, leading to broader acceptance and support for neurodiverse individuals in the medical profession.

He further argues that including neurodiverse physicians enriches the profession in several ways. By challenging rigid norms in medicine, neurodiverse individuals push the profession to be more inclusive and compassionate. They also provide care that is uniquely attuned to the needs of neurodiverse patients, offering identity-aligned support that can enhance patient satisfaction and outcomes. Dr. Neilson stresses that by fostering diversity, the profession not only lives up to its values but also improves care for all patients.

Join us as we explore medical solutions that address the urgent need to change healthcare. Reach out to us about this or any episode you hear. Or tell us about something you'd like to hear on the leading Canadian medical podcast.

You can find Blair and Mojola on X @BlairBigham and @Drmojolaomole

X (in English): @CMAJ
X (en français): @JAMC
Facebook
Instagram: @CMAJ.ca

The CMAJ Podcast is produced by PodCraft Productions

Transcript

Dr. Kirsten Patrick:
Hi, I'm Kirsten Patrick, editor-in-chief of CMAJ. With this special issue of the CMAJ podcast, Jola Blair will be back next week. For this episode, I'm butting in to draw attention to the important issue of physician mental health, most specifically the health of the neurodiverse physician in our culture of learning and practice. The timing of this episode is not an accident. This week I'm heading into ICPH, which is the International Conference on Physician Health. This regular conference is co-hosted by the American Medical Association, CMAJ's owner, the Canadian Medical Association, and the British Medical Association. I'm hoping that ICPH will also constructively address issues of physician mental health and disability.

I'm joined today by Dr. Shane Neilson. Shane is a physician, writer, poet, and academic. He's also CMAJ's poetry advisor. I wanted to talk to Shane about a new CMAJ Humanities Encounters article that he's written entitled “Professional stigmatizations.”

In it, he reflects on his experience of being a medical student and a doctor with both bipolar disorder and autism. I too am neurodiverse. I have a diagnosis of ADHD and that process flagged for ASD. So Shane's piece really resonated with me. Medicine is a hard career and can be made unbearably hard if you struggle to fit the mold. This is something many people with disabilities or illness, visible and invisible, have discovered. I wanted to talk to Shane about how he has, in the end, successfully navigated this obstacle course and whether he has any words of wisdom for the rest of us.

Shane, welcome to the CMAJ podcast.

Dr. Shane Neilson:
Thanks for having me, Kirsten. I appreciate it.

Dr. Kirsten Patrick:
So I'm going to dive right into the middle of your piece. You talk about a time during your second year as a medical student, which was which year? Do you remember?

Dr. Shane Neilson:
I remember all too well. I started medical school in 1996, so it would've been in 1997.

Dr. Kirsten Patrick:
Okay. And there you write, "I had just roused myself from bed after two weeks in which I rose only to use the bathroom or to drink. I lack a vocabulary to explain that I have both bipolar disorder and autism, meaning that I experience extremes of emotion and yet cannot identify or describe highs and lows." You later write that you acquired a diagnosis of autism in 2016 and say it was a "gleaming key to all understanding, a Rosetta Stone for all baffling past experiences." So how did getting diagnosed with autism help you understand retrospectively some of the difficult aspects of your medical career?

Dr. Shane Neilson:
Well, the more obvious diagnosis of bipolar disorder was more obvious. It was something that medicine, I think, was predisposed to identify. It was part of the diagnostic repertoire. That's pretty basic. The other things though, I think about autism being something that's a lack, it's identified as a lack in its diagnostic criteria. In the DSM, it's the lack of expression of things. It's an absence, and I think the physicians are less likely to be able to detect things that are more an absence as opposed to more presence, such as extremes of behavior, behaving as if one wouldn't—grandiosity, delusions, that sort of thing. So medicine was poor at being able to identify that missing piece.

But I was also not very able to recognize the autism, the neurodiverse part, in part because I was extremely discouraged to identify any sort of illness or difference from where I came from in New Brunswick. And it was quite stigmatized to be unwell, to be different. So I was never identified in school at all. Though I'm sure it was pretty apparent based on some of the experiences. I can recall that the difference was manifest, so to speak.

So medicine had enough to explain me, and it stopped at bipolar disorder, but I never felt that was an adequate explanation for the social difficulty that I was having and had historically had all through my life, the sensory issues that I had, and none of these things I was asked about. But none of them I also thought about. I just internalized them as normal. That was just the way I was, and I guess I was disinclined to be curious about that in others. I guess I didn’t want to be Rain Man, right? I acquired that as a nickname in high school. I didn’t want to be that. So maybe I just shoved it out of mind.

Dr. Kirsten Patrick:
Right. So lots of things that you've said resonate with me. I think societally people do have an idea of a person with neurodiversity, an autism diagnosis being like Rain Man or a person with an ADHD diagnosis being the hyperactive little boy who cannot sit still in class. And when you don't fit into that kind of clear diagnostic mold, to your point, I guess it can lead to folks just trucking along and realizing later that was the cause of some issues all along.

So I'm going to ask you about some masking. This is a thing that people with neurodiversity who are functioning well with it, essentially on the surface, do. I've heard people talk about this, and I wonder if masking has been a thing that you've done during your career. Because for me, when I learned more about my condition after being diagnosed, I started to understand why so much of medical school training was utterly exhausting for me. It was the masking, the constant masking, and I was just curious if this is something that you've been aware of.

Dr. Shane Neilson:
Yes, I sure have. So it's complicated in that I was less able to mask. It was quite apparent right now—my hand, since you mentioned it, I checked in on my body and I was like, "Oh, my hands are stimming." I'm running my thumb over my index and my middle finger, and my left foot is lifting and falling in a particular fashion that's a little bit odd—cutting my big toe, pointing down as my foot moves.

Anyway, so when you said it, I was obviously not masking for this interview, although I guess you can’t see. I'm conscious of it with patients. That's basically where I'm conscious of it. I stand outside the door sometimes and just check in and I'm like, "Okay, you got to constrain this," because I do find that when I'm meeting new people, or just—it's good practice, I think, to try and tamp it down.

Dr. Shane Neilson:
Unfortunately, in encounters in which I'm meeting someone whom I don't know a lot of, I think probably the encounters that don't go the greatest just in terms of developing a relationship might be from that difference that's noticed. But I don't have any objective kind of evidence of that. No one's ever confronted me, said, "You're weird. Why are you doing that sort of thing?" Because that's impolite in a sense. But I do consciously do it, and it's exhausting. It's extremely hard because I'll catch myself doing it again and then I'll say "stop it" in my head, and it's too bad I don't have to do that at home. It's much less exhausting. I can move my hands, I can move. I can move my foot.

In medical school, though, I have to kind of make a distinction. I couldn't mask when I didn't know. I couldn't mask when I didn't know. So I had these things, and I don't even think I was aware of them in a conscious way. So I didn't know. And then adding to the difficulty was the bipolar itself, which would really distract me from conscious awareness of things. So the confluence of the two things together prevented me from consciously masking.

I've practiced it to the point now where it can become automatic. So I don't necessarily have to consciously do it all the time—I'm already doing it. But it does take a big toll on energy. It's like something the normative person doesn't have to do. It's an extra energy cost.

Dr. Kirsten Patrick:
Yeah, it requires some extra thinking to behave in a certain way. So you were talking about awareness and being unaware of your features of your autism within medical school, and in your piece you write, "Medical school requires learning in groups, teams, but I find conversations involving more than one person difficult." Did you manage to find creative ways around this at the time?

Dr. Shane Neilson:
No, no. I found it extremely difficult to work in groups, and I still find it difficult to have more than three people. Three is hard, two is manageable, one is best. Beyond three, I don't know when to talk. I still don't.

So when we're on a CME with my colleagues here in Guelph, we have a McMaster FPME problem-based learning thing, and I don’t know when to talk. The leader, whom I won’t mention by name, but the leader is very nice and will recognize this, the difficulty that I have. So they'll directly address me, and then I'll know when to speak.

So there is that piece, I think, that you can let people know.

But that's a very fraught strategy, and I only ever do it in rare circumstances when I feel comfortable and I think it's safe to do so. Disclosing—disclosing any sort of, scare quote, "weakness" within medicine is a dangerous proposition. Unfortunately, it remains so. Back in medical school though, I really suffered for that because I didn't know what to say. I didn't know when to say things, and there would be interruptions, I think inappropriately, if I felt like I was not speaking enough or contributing enough. It didn't fall in any sort of sequence or flow. There wasn't the natural building of rapport within a group.

The only thing that kind of assisted me in those situations was that I was reading all the time and I was intelligent. So I would know answers, and I would have the right thing to say. When it was information-based, I often could be a resource. But when it was, "How might we do this thing?"—when it became a praxis issue—I was definitely more challenged. And the other part was because I didn't know or was less able to tell what this mood piece was, I might have a disordered affect within those situations. So it was especially challenging.

Dr. Kirsten Patrick:
I relate a lot to that. Sometimes in my current role, I have to chair a lot of meetings. I remember when Andreas Leus stepped down as editor-in-chief and I took over as interim, I would step into this role of chairing meetings, and Andreas would have to gently remind me, about five minutes into the meeting, that we perhaps do a round of introductions so that all the strangers could get to know each other. And now that's something that I have to practice before I go into a meeting. I go on my own personal little agenda—introduce myself, allow others to introduce themselves. This is what people do, rather than just launching into it because everybody knows why we're there.

So another anecdote I can share: I once tried to describe my difficulty with participating in groups, and about the best I could come up with at the time was, "I'm shy, I guess." And somebody turned and said, "Actually, you're just arrogant." And that was rough because I knew I didn't feel arrogance. I didn’t have the esteem to speak out. To your point, I didn’t know when to insert myself into a conversation, but I wasn’t feeling that I was better than anyone else.

And you write about being taken aside by a preceptor in your first year at medical school who said, and I quote, "There's something wrong with you. And I talked with someone else who has observed you, and they think the same." How did that make you feel at the time, and what decisions did it lead you to make about yourself?

Dr. Shane Neilson:
Yeah, I was 21 or 22—can’t exactly remember—but young, and hearing that from somebody, a faculty member, made me think I wasn’t cut out to be a doctor. I had certainly gotten lots of feedback informally, socially, from other students, and especially in group situations from preceptors, that subtly hinted that maybe I might not be a good student. And then having somebody actually confirm that suspicion was devastating. I seriously thought about not returning after my first year.

So it was a powerful official branding of being strange, and there was no follow-up question right after being told, "There's something wrong with you." There was no follow-up question of, "Is there anything we can help with?" or "Is there any sort of resource I could be directed to?" or any sort of assistance or caring or kindness whatsoever. It was entirely a negative interaction in which I was branded as bad. I wish—I absolutely wish—that at the time I had responded in the following way: I wish I would've said, "Well, what exactly do you think is wrong with me? What is it that you're noticing? What is it that I can work on? Do you have any specific behaviors that you can name such that I can address those and work on those going forward?" Because I guarantee you, I would've wanted to, but instead I just got the brand.

Dr. Kirsten Patrick:
I get that. I was told more than once by a preceptor that I didn’t belong in medical school. So that implied that I was occupying a spot that someone better suited could occupy because, for example, I couldn’t sit still and look down a microscope for three hours straight.

You now move in medical education circles, and you were talking about the response that you wish you might've made at the time or the follow-up question that might have come. In your article, you write about being part of an online group discussing medical students and professionalism, and a comment is made that essentially it's not a nice thing to do to enroll medical students with multiple psychiatric and developmental comorbidities because it's, and I quote, "unfair to them to have them in an impossible situation where they cannot succeed." What was your response to this idea of compassionate exclusion?

Dr. Shane Neilson:
I was skeptical. It's such a human attitude in a sense. A very misguided one. My son is intellectually disabled, and one of the challenges that I have—which is, I think, valid—is sussing out the things that he can do and maybe the things that I should guide him not to do. The things that are accessible to him and the things that are not, the things that will never be, and the things that might be—the things that might change in the future.

For him, it's a moving target because he is developing and growing. So I do a kind of compassionate guidance to discourage him from entering into activities where I know the outcome will be negative. I'm asking myself, "Am I policing his possibilities? Am I somehow preventing him from achieving everything that he could?" So I get it. I guess in a sense I'm trying to do it compassionately, but I get it in a sense a little bit.

I think, though, I'm doing it differently than I heard it done that day, because I think this is increasingly the case. I'm hearing from a number of people ever since I published an article in the CMHA, I'm hearing about resident referrals to disability-inclined, autism-sensitive sources. So people are getting identified increasingly within the institution with being on the spectrum. And I'm hearing about residents getting assistance through social skills training, limiting sensitivity.

And I'm especially hearing, and this is the key, this is absolutely the absolute 100% the change that is required. I'm hearing about program directors becoming educated about physicians on the spectrum, and I'm hearing about departmental adjustments and accommodations for residents in similar situations. So I'm hearing little teeny, tiny occasional tales of change.

Dr. Kirsten Patrick:
So I'm going to pick up on that word "accommodations" because this is something that it didn't even occur to you and me that we needed. And it's something I've only recently become aware of because one of my children requires accommodations. So I think that without accommodations, experiences can be traumatic. Now, I know that in your circumstances, you also have bipolar disorder in the mix, but you write that when you visit the town in which you attended medical school, "You can't look at the hospitals, the sites of my own despising where I learned to believe in my own unsuitability." And I know this may seem like a silly question, maybe not, but what one thing do you now consider could have made that experience as a neurodiverse medical student more positive or less traumatic for you?

Dr. Shane Neilson:
I wish that the understanding of the social difficulty would've been taken into account. So let's say if I had somehow transcended the stigma of self-identifying during the interview process or after being accepted to medical school, if I had taken that unprecedented and frankly unwise step at the time to have declared that I was autistic. Well, let's also say that a miracle occurred and the institution was receptive to same and also educated about same, and decades ahead of where the profession eventually ended at and hopefully will continue to evolve.

The thing that I would've appreciated, especially, would've been the education of faculty around the diagnosis such that there could have been a cultural change of acceptance. So the first thing I'm asking for is impossible. Okay. I am going to talk about the magical cultural change in which the neurodiverse were welcome, not shunned or stigmatized, that there was an openness to difference, that it would be okay to be a little bit unusual, that there wasn't some sort of normative expectation of hyper-sociality and just being regular, behaving like others completely.

Yeah, I would've liked that. That's impossible and unreasonable. And how does one accomplish that? Except through a million different acts of kindness over time. But let's say practically, I'll actually answer the question for real. So I would've appreciated that the preceptors who were assigned group tutorial oversight throughout the first and second years of medical school, I would've appreciated if they would've known about the diagnosis. I would've appreciated if they would've accepted it because it was expected to be accepted. And I would've appreciated that they would've entered that into their calculations about forming an opinion around me.

In terms of group participation, group participation has always been something I've been terrible at. I'm not sure it's fair to be evaluated on a normative scale amongst Normies. There are different ways to participate, and it would be nice if those could be allowed into consideration. I would've appreciated if I would've been encouraged to contribute at certain points by knowledgeable preceptors—that would've been inclusive.

Even though I'm saying these things, though, even though that would be a dream to go back in time and have that experience, I'm talking about something impossible. I wasn’t identified. I didn’t have the language to even advocate for myself or let alone know what it was in the first place. So it wouldn’t have happened. But I'm also going to conclude it with—even the practical dream would fail because I know that at that time, those preceptors didn’t exist.

Maybe some—I met some exceptional people in my time, some very welcoming, friendly people, but I met a lot of other kinds too, with very restrictive views about what was acceptable. And they valorized normativity, and I don’t think even a word in the ear from the undergraduate dean would've made much of a difference.

Dr. Kirsten Patrick:
Yeah, it was a culture like that. I graduated medical school in 1997, so we were probably around the same time as medical learners. And I don’t think that—retrospectively, I agree with you—I don’t think it was even possible for people to contemplate that back then or contemplate a culture that much different from what it was, that it could accommodate folks who didn’t fit the mold in quite that way.

But I do think that looking towards perfection and saying, "How could it be different for similar medical students today?" and then taking some small steps to work towards that gets us somewhere. And I think you end your article on a little bit of a positive light at the end of the tunnel. Kind of note to talk about students seeking some kind of community. At least that's my takeaway.

And I think probably you and I have managed to find our unique supports our own way during our career. So I’m hearing you talking deliberate inclusion education and for people to be able to find their community within medicine and just to sell it to folks. So those colleagues who wanted to compassionately exclude, how would you sell it to them that the effort is worth it to make neurodiverse individuals feel at home in the medical learning space? What is it that we bring uniquely that, if the community closed their doors to us, would be lost?

Dr. Shane Neilson:
I think by including us, the profession proves that it at least approaches the view that it has of itself as compassionate and truly interested in the health of people. So we live up to our oath—should we have taken it? We did back in the day, bureaucratic oath. We do harm by not including us. We do harm to ourselves. I speak here about the profession. I speak here as a physician. We do harm to the profession, to the ideal that is rarely achieved, but to which we should aspire. I'll start there.

Second. What are the neurodiverse patients to think of a profession that discourages the inclusion of neurodiverse people on first principles? I know what they would think. They would think that medicine is exclusive, non-inclusive, that it is ableist. That is not a good thing for them to think because they would feel themselves judged—and they should—because that is what's occurring, no matter what excuses are provided, no matter what noble, obliger kind of rationalization is made.
And what would that rationalization be? It would be one sponsored by the very forces that are crushing people in the profession right now. You need to be able to do everything. You need to be able to do everything in the time allotted—the impossible time. You need to see every last thing and do every last thing and know every last thing. It is that kind of belief that is hurting the normal people. So by including the neurodiverse in the profession, that kind of attitude is challenged, both implicitly and explicitly.

Third, we have the ability to provide uniquely attuned or at least identity-aligned care for other neurodiverse people, and at least in theory are less inclined to discriminate against them. So there’s been some evidence in the medical literature that I’m familiar with—a burgeoning evidence—that suggests that, for example, Black physicians provide possibly improved care for their Black patients, or at least there’s perceived levels of satisfaction that are greater. And similarly for the queer community and in patients who are queer.

So, at least in my personal practice, I have—it’s perhaps 80% or greater—it’s mental health practice, young adult and adolescent mental health practice at a university clinic. And I like to think at least that I provide care that’s compassionate because I understand some of the places that my patients have been. Not completely, not entirely, but at least I understand the directions that they’ve gone in and the struggles that they’re having to even articulate what those experiences are and be able to name those feelings.

So I think that is a recommendation, that is a selling point. So in summary, the profession actually puts its money where its mouth is—it has people within it that can exemplify a different way to approach medicine that might ameliorate the profession’s tendency toward increasing mental health negative outcomes and burnout by rejecting that culture. And there’s the possibility of improved or at least identity-aligned care for individuals with similar diagnoses.

Dr. Kirsten Patrick:
Awesome. Shane, thank you for joining me today. This has been a fabulous conversation.

Dr. Shane Neilson:
Well, thanks for having me, Kirsten. And thanks to the CMAJ for publishing this piece that hopefully will contribute a little bit, maybe, to cultural change. I know I’ve received the occasional word from physicians out there, and I continue to welcome those emails from people who want to connect.

Dr. Kirsten Patrick:
Dr. Shane Neilson is a physician, writer, poet, and academic in Cambridge, Ontario.