Beyond Labels: Embracing Neurodiversity and Inclusive Care with Dr Andrew Marshall

Dr Andrew Marshall reflects on his career in developmental paediatrics, highlighting the importance of strengths-based, neurodiversity-affirming care, inclusive services, and learning from the lived experiences of children and families, while sharing his work in autism, medical education, and gender-diverse healthcare. He also advocates for moving away from deficit-focused diagnostic language towards terminology that recognises neurodevelopmental differences as part of human diversity, emphasising that adapting environments and affirming children's strengths can have a profound lifelong impact.

Transcript

James 0:11
Te no koutou, te no koutou, te no koutou. Hello to all ASDP listeners. My name is Dr. James Carter and I'm here in Queenstown, New Zealand at the ASDP 2025 conference where the theme is wellbeing, thinking well, speaking well and being well. My guest today has just been awarded Life Membership of the ASDP and that guest is none other than Dr. Andrew Marshall, who it is my honour to speak to. Andrew is a general and developmental paediatrician and is the clinical director of child health at Wellington and Hutt. Ten a kwe, Andrew. Ten a kwe, James. You say it with such better pronunciation than me. Andrew, a question we've been asking all of our guests during the conference is given the theme is, the theme of the conference is wellbeing. Can we ask, can I ask you what you do to look after your own wellbeing? 

Andrew 1:06
So, family is really important. And so, I'm down at the conference with one of my daughters and her partner. So we had a lovely time skiing before the conference. And, um, and also on my day to day, uh, I sing in the Cathedral choir in Wellington. So that's an eight hour a week commitment, but something that refreshes me and takes me out of my work. So, um, that's, that's really important to me. 

James 1:31
You certainly sound like you've got a big, booming baritone voice. Yeah. 

Andrew 1:35
Uh, but yeah, not even a baritone, a bass. Yep. There you go. 

James 1:39
There you go. Well, it probably works very well for podcasting too, I imagine. Uh, fantastic. And tell me then, did you take, um, take part in the song circle yesterday morning? 

Andrew 1:47
I didn't. I figure, see, I get all this singing every week. I didn't need to do that, but, uh, I was sleeping in. 

James 1:55
Fair enough. And you left it, left it to others to, to, uh, to, um, show their wares. That's right. There's a saying that if the only, the only birds in the woods that sang, that if the only birds in the woods that sang were those that sang best, then the woods would be very, very quiet place. So it's important that you let some of the others do the singing yesterday. Well done, Andrew. Well done. Fantastic. All right. Um, so listen, Andrew, congratulations upon your life membership. Um, it's an honour, uh, very well deserved. Um, can we start off the podcast by, by delving into, um, some of the, some of the work you've done throughout your career, some of the work that's really been most important and most significant for you? 

Andrew 2:33
So, I started off as a full-time developmental paediatrician and that's my area of expertise and the thing that feel like I know what I'm doing most in. Uh, but over the years I've become, uh, a general paediatrician as well. And then more latterly start to take up some, uh, management responsibilities. So my career has morphed a little bit over time, but I still, um, uh, enjoy the, the neurodevelopmental work and that's still the thing, as I say, that I've, uh, feel like I've got the expertise and I can help others in the department with. 

James 3:10
Um, you've certainly got a lot of expertise around autism. Uh, and I believe that going back quite some way, you, you've been involved in, um, um, preparing the autism guidelines here in New Zealand and then, and then the updated current guidelines, the living guidelines. Can you, can you take the listeners through that? 

Andrew 3:25
Sure. So the, the, the, the New Zealand autism guideline uh, a really important piece of work and, and we were very proud of the, the end result, uh, one of the most comprehensive autism guidelines in the world in the sense that it covered the, uh, diagnostic and the medical aspects, the educational aspects, and it covered the, all of life aspects. So not all autism guidelines do that. And then, um, the other interesting thing about the process is that when the guideline was first written, there was a, uh, an ongoing commitment from the ministries of health, education, and social development that it would be, uh, sustained and, uh, and reflect modern practice over time. Um, so every year that's the living guideline process. So every year we meet and we review, uh, uh, uh, commissioned, uh, usually, a meta-analysis of the latest, uh, research or developments. And so we add, uh, each year to the guideline to keep it relevant. 

James 4:33
Um, and how do you feel, where do you feel those guidelines? 

Andrew 4:40
I think particularly around the, um, all of life. And I think that I'm very proud of the fact that we, uh, preempted some of the changes that were going to come in terms of much more understanding of the lived experience of people with autism. Um, much more, um, uh, engagement with the community using appropriate language and ref and, and understanding that this is not a disorder. Uh, it's a difference. It's, part of the neurodiversity spectrum, if you like. Um, and, um, and I think that we, the guideline was ahead of its time when it first came out and we've been able to emphasise, uh, and build on that over time with ensuring that. And nowadays when we choose a topic, we're very much engaging with the community about what, what is helpful for you. Uh, and examples autism in the workplace, Um, social, uh, we looked at, um, sexuality. We've looked at, uh, a number of different areas to try and, um, broaden the impact of the guideline. 

James 5:57
Andrew, you've obviously been, um, heavily involved in teaching and education of, um, paediatricians as they've been coming through. One of your New Zealand colleagues told me that if there is a paediatrician in New Zealand that conducts Griffith, Griffiths developmental assessments, then Andrew will have trained them. Um, tell us a little bit about your time in teaching and training and. 

Andrew 6:16
I just love, and that's one of the, the, the things that gives me most joy in my work is, um, is teaching the registrars, uh, giving lectures. Um, that, that, that mentorship model that we have on ward rounds or in clinics, helping the, develop, uh, the, the skills of these young people and turning them into really great doctors. Um, and in particular, uh, I've had this quite prominent role, uh, as running the, the Griffiths courses, um, for about the last 18 or 19 years in New Zealand. Um, and, um, and I've just handed the baton over. So I think, uh, this, um, February was the first Griffiths course I wasn't involved with, which was, um, you know, an interesting experience, but actually a lovely one that I've been able to, um, grow a group that is also enthusiastic and, and sees the, the, the, the benefits. Um, and that there, there, there is a place for the Griffiths in terms of really defining, uh, children's development, uh, ultimately with a goal of helping those children and their families navigate the system better. 

James 7:22
You've also set up a sex and gender working group. Tell us a bit about that. 

Andrew 7:27
Well, that's, uh, has a really personal origin and, um, I've got a, a fantastic son who's now 26 years old, uh, and who has always given me permission to talk about, uh, him and to talk about our personal story. Um, uh, uh, uh, uh, uh, uh, uh, uh, uh, son was not a son, was a daughter. And so that transgender, um, process learning about pronouns, learning about the transgender journey, um, was a very personal one, one that we wanted to affirm our son, um, in his trajectory. Um, but very quickly became obvious just how much discrimination. Just how hard it is for transgender young people. And we held a, uh, a hooey, um, and, and heard, and things I hadn't realised, like how difficult it is for young people to get into housing, to flatting situations. The housing security is incredibly hard if you're a transgender young person. And so that spurred, uh, a group of us to set up the sex and gender diverse working group, which was, uh, an equal partnership between people with lived experience and, uh, people in the healthcare system who had some access to the, to the leavers, uh, and the ability to make change. And so we, uh, and we collaborated with the development of, uh, the Aotearoa, transgender guidelines, and we worked locally to improve services, uh, for young people. And that's, uh, that's, uh, uh, again, an ongoing process. 

James 9:13
Yeah. That's amazing work. Um, and thanks to you and your son for, for sharing that story with us. Can I, can I, can I take you back to when you sort of, you specified 14 years of age was when your then daughter, um, effectively became your son. Was that, can you, can you take us back to, um, how that came about? Was that sort of a gradual thing? Something that you as parents were kind of aware of, or did it, did it take you by surprise at the time? How did it occur? Did your daughter then, you know, come and just explicitly say to you, mum and dad, hey, mum and dad, I think I'm a boy. Um, how did it all play out for you guys as a family unit? 

Andrew 9:47
Um, yeah, so it was, um, uh, Emlyn gave us a letter, uh, that, um, that they had written, uh, and, uh, saying that they felt that they were, um, gender fluid, uh, and over time, uh, Emlyn has become more explicitly, uh, uh, male. Uh, and it didn't take us by surprise, um, at kindergarten. Um, Em was always, um, uh, you know, in the sandpit with the boys, loved books about dinosaurs. and so to some extent we, I'm just thinking that, um, their favourite book at the age of two was, um, construction trucks that I read as the bedtime story. And so, so it didn't kind of surprise but then I think the challenge for us as a family was more around how do we affirm and respect this? And particularly pronouns. If you're not used to using they, them pronouns, it was initially incredibly awkward and I would have to really think, uh, and, and how I described my young person. Um, and, uh, uh, and, uh, and over time it's become much easier. Um, and to some extent now, uh, Emlyn's preferred pronoun is he, uh, actually linguistically that's sort of much easier to navigate than the they, them, uh, pronouns. But that was a journey for our family. 

James 11:18
Yeah, I can imagine it was. And it's really interesting you mentioned that about the, the awkwardness of the they, them, because I know that there was a, um, at least a small group, um, in Australia, a small group of doctors who actually, um, who actually wrote, you know, a submission of some kind just indicating, look, the term they, them is a plural term. And it can be a little bit confusing in medical correspondence when we're talking, you know, when really it's referring to a singular, um, but often when you're reading the letter of a patient, it can be actually a confusing term. You know, is it, are we talking about the individual now or are we talking about the, are we talking about a group? Are we talking about the family and so forth? Um, and so it's interesting, interesting to hear that as a parent, you had that awkwardness as well. Um, I do wonder whether, instead of using that particular pronoun, a plural pronoun for, for an individual person, are we better off simply to use the person's name? Have you got any thoughts on that? 

Andrew 12:13
Well, it's interesting because although at the start, it's awkward. If you were to say, oh, who's left their bag here? It's one person left their bag, but you're saying there, because you don't know whether it's his bag or it's her bag. Um, and so we already, we already use plural pronouns in certain circumstances. So it's just an extension of that. So I think the awkwardness just comes from unfamiliarity. And I think that when you, when you start to use those terms, it's, um, it becomes easier. Um, but certainly in some clinic letters of some young people I've seen, um, particularly where there's tension around what, what they want and what their parents want. Uh, there are some letters where it's, um, it's been easier at that moment in time to not use a pronoun at all. And just to each time, uh, use the person's name, uh, in the correspondence. 

James 13:13
Sure. Okay. Thank you. And can you let our listeners know a little bit about, um, the sort of access there is here to New Zealand, sorry, here in New Zealand, the access there is to gender dysphoria clinics. So I'm, I work in Victoria back in Australia, and we've basically got one gender dysphoria clinic at our tertiary hospital, Royal Children's Hospital. And that is, um, a case of demand massively exceeding supply. Um, I assume it's the case here in New Zealand as well. Uh, what sort of services do you have here? 

Andrew 13:41
It's very challenging and services are very much, um, based around clinicians with experience. And so people in, uh, smaller towns or rural areas have very limited access and sometimes no access. Uh, and the access is very variable, sometimes run through a GP who has an interest, sometimes through a hospital clinic. Um, in, uh, Wellington, we've transitioned from, uh, um, paediatric endocrinologists doing the clinic, which, um, wasn't always a good fit, um, to actually we've employed a GP in a, in a tertiary clinic, uh, along with a psychologist, uh, and in Wellington that model is, is working for us. But it's, uh, there isn't a one size fits all. And as you say, the, the demand is, is huge. There was a pilot at Victoria University Student Health Service setting up a gender affirming pathway. And as you would predict, and they did a pilot research project showed incredibly engaged and very high rates of people liking that service and saying that they really appreciated it. But then, of course, a lot of transgender young people from around New Zealand enrolled at Victoria University instead of other universities, and the service was completely swamped. And so again, if you actually create a service that is appropriate, the demand will very rapidly exceed your supply just because there is so much unmet need. And I guess that's the driver for all of this is a huge amount of unmet need, a huge amount of personal distress. And one of the sobering and awful statistics that drives me for this is the very high rate of suicide and attempted suicide. One in four young people, transgender young people have attempted suicide. And that's come from the Youth 2000 survey and the subsequent youth surveys. So a huge burden of stress. And it's our job to try to try to try and reduce that distress as best we can. 

James 16:08
It's a striking number, isn't it? One in four. What's your feeling on the broader community's understanding and appreciation of transgender, transgender services here within New Zealand? 

Andrew 16:22
Look, I think it's becoming more and more difficult. It's becoming really polarised. And you have some services for young people that are quite radicalised and demanding, we want this and we want it now, and I absolutely get that. And you've got the opposite of the very conservative, and you can see in America just how much things are going backwards in terms of conservatism and discrimination and stripping away rights. And so it's becoming an increasingly difficult space 

and the middle ground is sometimes quite hard to establish and maintain nowadays. 

James 17:12
I was really enjoying this interview up until the point that you mentioned America. It's distressing to think about what's happening over there, isn't it? All right, listen, that's really fantastic information in regards to that and congratulations on the work you've done with that sex and gender working group. Moving on now, Andrew, earlier in the conference, I had the pleasure of interviewing for this podcast, Kerri Opai, who spoke to the conference about the power of language. Following his conference presentation, one of the delegates raised a point or shared with the group, I should say, that her child had been assessed as meeting the diagnostic criteria for ADHD. And once it was her child rather than her patient being bestowed with that diagnosis or that diagnostic label, perhaps, it struck her that two words within that diagnostic label came as a real blow to her. And she said they were the two D words, deficit and disorder. From her point of view, her child is bright and bubbly. The terms deficit and disorder are really quite awful to her. And at that point, you stepped up and suggested that perhaps the editors of DSM-6 need to consider making some changes in our diagnostic terminology. Who knows when DSM-6 will be coming out? But you suggested they need to make some changes to our diagnostic terminology. Now, I understand with all the work that you've been doing, the language around developmental issues is a really important issue. Can you take the listeners through some of those comments you made and some of your thoughts around some of the terminology and our diagnostic labels for conditions such as ADHD and autism spectrum disorder and the levels and any other conditions that have got these sort of economist type labels? 

Andrew 18:54
So I was giving a lecture about eight or nine years ago to a special education audience and a woman came up to me and she was shaking and she said, well, you'll know why I'm so angry. I said, no, I don't. Tell me why you're so angry. What right do you have to say I'm disabled? And it was a difficult conversation, but a really kind of sentinel conversation for me. And really, the more I reflect on it and the more we think about it, this whole medical model that we're trapped in is predicated on disorder. And these neuromaturational conditions, they're not disorders, they're differences. They're wiring differences. And they have strengths as well as difficulties. And I also reflect on the World Health Organisation social model of disability. And that's something that is, I say whenever I'm lecturing medical students, this is the most important slide that I've got. An impairment is only disabling if the environment is not adapted to it. And those are very powerful words and a really powerful concept in terms of our job is to make the environment adapted for diversity. And if we do that, then people have differences. People may have difficulties in certain circumstances, but we can make those difficulties a whole lot less if we have a more inclusive environment, social environment around us. And so I love the terms that Keri Opai has come up with and most New Zealand paediatricians now in our letters. So if I'm making a diagnosis, I'll say the issues list at the top of the letter will say and I may put ASD in brackets after it and for ADHD. And when I explain to parents, I'm giving you this label ADHD. I really don't like the label. The Americans make us use it. I much prefer... 

James 21:05
Those bloody Americans, they keep popping their heads up. 

Andrew 21:06
They do. So, and I say to parents, look, Maori have a word for this, which is ararere tini, pays attention to many things. And I really love that. And then I go on to explain what ADHD is and that your brain is really active. You've got all these great ideas, but they're just happening all at the same time. And you need the frontal lobe to kind of say, I'm concentrating on that and I'm ignoring this and I'm going to do this later. And then it leads on to the medications. And the medications are designed to help the frontal lobe do that kind of role that is not happening in that individual as well as it could. So I, and even the concept of giving stimulants, I mean, I do, I prescribe a lot of stimulants. 

There's an ethical question about if we, if these children were just learning in the wild and if they were building forts and they're, you know, running after animals, would they need stimulant medications? We're making them sit in a classroom for six hours and be quiet. And is, and for some kids that learning is not the right way that they learn. And that's a much more hands-on learning. And at this conference, we've had some talks about how our schools fit for purpose. And, and I think there's a real question there. So, and, and I certainly draw the line at kids I've seen who are in modern learning environments, these barn-like classrooms with a hundred children and three teachers and which became the trend. And now the trend's reversing, thank goodness. But the prescribing fluoxetine to a child who is otherwise happy, but is incredibly distressed and anxious because their school environment is completely inappropriate for their needs. That to me is an unethical position to, that I'm in and that the parent is in. When in fact this child, their, their anxiety is entirely predicated by an environment that's completely overwhelming from a sensory perspective. So I think we've got a long way to go to try and make environments more suitable for children. And if we did, we would need to use medications less. There's always a place for medications. And as I say, I'm a very high prescriber of, of stimulant medications and a lot of the SSRIs, clonidine for emotional dysregulation. So I do a lot of that prescribing, but also talk to the parents about this is a, this is something that we can do right now to make things a little bit better. But in an ideal world, it would be great if we didn't need to do these things. 

James 24:01
And so coming back to the terminology, would you consider there being merit in us submitting to our colleagues at the American Psychiatric Association, who are the editors of DSM? Is there merit to submitting Kerri Opai's terms as terms to be adopted universally for autism and ADHD? So Taki Watanga being the term for autism spectrum disorder. And Andrew, I'm going to throw it over to you to pronounce the 

Andrew 24:26
Taki Watanga for ADHD, and there are other wonderful terms. I'm doing less cerebral palsy work than I, than I used to, but there are some other very appropriate terms. I think, and what I found interesting about Kerri Opai's talk is he was talking about how a lot of different countries were very interested in his work. And, and it's actually the principle, the principle is let's look at a strengths-based language language, because actually that, that, that, that, that, what are the strengths in these differences? Because language is important and, uh, uh, labelling a child as disabled, uh, or disordered is actually ultimately not helpful. And in terms of DSM five, uh, DSM six, um, we really need to move away from the, we're trapped in this medical construct that you're, uh, and it's a binary construct, you're either normal or you're abnormal. And that is a really unhelpful construct. I think both in disability, uh, work and also in the mental health, uh, space. Yeah, absolutely. 

James 25:41
And look, when you, when you look at the history of the evolution of changes to the classifications within DSM of ADHD and autism, you can't help but sort of laugh in a very, very frustrated way. I mean, I think, I think about ADHD, obviously it's had multiple terms over the time from minimal, minimal brain dysfunction and hyperkinetic disorder. And then it became ADD, attention deficit disorder. And then they said, hang on, a lot of these kids are hyperactive. So we'll throw in an H and so it's now ADHD, but then I'll hang on. But there's kids who, uh, have ADHD, but they don't have the H. So instead of going back and calling them ADD, attention deficit disorder, we'll say they're ADHD, even though they don't have the H and we'll call it inattentive subtype. And it all just becomes very flip floppy, really. When you look at the classification, I once had a, uh, a, um, patient who I'd newly diagnosed and, uh, was having the followup with the patient and the mother and the mother came in and said, we're not referring to it as ADHD, are we? And she said to her daughter and, um, and I looked and I said, what's your call on it? And her daughter said ADHC. And I said, oh yeah, tell me what's the C stand for? And she said, ADHD, attention deficit hyperactivity condition. Said, I love it. I said, you guys have got it, you know? And so even a simple change like that, I, I strongly doubt given how conservative America has, has become, I strongly doubt that, um, the American Psychiatric Association will embrace, um, Kerri Opai's terms, but even some more subtle changes like, um, just changing disorder to condition. I think that would be kind of beneficial for a lot of people. Absolutely. Um, fantastic, Andrew. Look, it's, it's, um, it's fascinating to talk to you. I'm sure we could talk for many, many hours. Um, but you've got more conference to attend. Let me ask you, um, one final question that we've been again, asking all of our guests. That question is, is there one thing, one intervention, one act, um, that you can think of that you're doing today or that you can do today, whether that be in your practice or in your teaching or in your research, one thing that you can do today that you think might still be changing a child's life five years or 10 years or 20 years from now? 

Andrew 27:49
I think, uh, again, that language helping somebody to understand that they have some differences from typical kids, but actually that makes them much more interesting. And, and sometimes in, in, in clinic, uh, I'll, I'll say to a young person who I'm diagnosing with a condition, uh, I'll, I'll tell you a little secret. There are some kids at school who are just kind of average at sport and the average of their reading and the average of maths and the average of everything and the average of having friends. 

And, um, and so if I can do one thing, I think it's to, to affirm people's individuality. And although I can help them and help their parents, um, sometimes with medication, sometimes with advice, uh, if they go away feeling affirmed, uh, and not, uh, disabled, uh, that to me is, is, is, is something that would give me joy. 

James 28:58
What a wonderful take home message. Dr. Andrew Marshall, it's been a pleasure to interview you today. Congratulations once again on your life membership and thank you for joining us on the podcast. 

Andrew 29:09
My pleasure.