In this ‘In Conversation’ podcast, Dr. Lucy Livingston provides insight into the comorbidity of Depression in Attention-deficit / hyperactivity disorder (ADHD) and Autism.
Discussion points include;
- The prevalence of ADHD and Autism.
- Neurodevelopmental disorders and comorbidity.
- Depression in ADHD and Autism – how common is it, how does it present, and what does the research tell us about this association?
- Why might depression in neurodevelopmental disorders be rarely addressed in clinical guidance and research priority documents?
- How depression in ADHD and autism is currently assessed and treated in young people.
- An insight into what Lucy will be covering in her 10-minute talk on 11 May.
- What CAMH professionals should take from the podcast and the upcoming talk.
Lucy will be presenting a talk on the same topic, entitled ‘Depression in Autism and ADHD: What do We Know?’, at the JCPP Advances 2023 Lecture series ‘What the research tells us; Anxiety, Neurodiversity, Suicide, and Genetics’. This FREE online event will be held on 11 May to celebrate the work of ACAMH’s open access journal, JCPP Advances. Book now to attend for FREE.
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Dr. Lucy A. Livingston is currently a Lecturer in Psychology, based in the Department of Psychology at the Institute of Psychiatry, Psychology and Neuroscience (IoPPN), Kings College London. Following training at the Social, Genetic and Developmental Psychiatry Centre at the IoPPN, she was a Waterloo Foundation Research Fellow at the Neuroscience and Mental Health Innovation Institute at Cardiff University. Her research uses interdisciplinary methods to understand neurodevelopmental conditions across the lifespan. She is particularly interested in cognition, mental health, and resilience processes in autism and ADHD, as well as research that is co-developed with neurodivergent people.
[00:00:01.390] Jo Carlowe: Hello, welcome to the In Conversation Podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Jo Carlowe, a Freelance Journalist with a specialism in Psychology. Today, I’m interviewing Dr Lucy Livingston, a Lecturer in Psychology at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London. Lucy will be presenting a talk on “Depression in Autism and ADHD: What do we know?” at the JCPP Advances 2023 lecture series titled “What the Research Tells us: Anxiety, Neurodiversity, Suicide and Genetics,” to be held on the 11th of May to celebrate the work of its journal JCPP Advances.
If you’re a fan of our In Conversation series, please subscribe in your preferred streaming platform, let us know how we did, with a rating or review, and do share with friends and colleagues.
Lucy, welcome, thank you for joining me. Can you start with an introduction about who you are and what you do?
[00:01:06.470] Dr. Lucy Livingston: Thank you. Hello, nice to be talking with you today. As you, kind of, outlined in the introduction, I’m a Psychologist and I’m a Lecturer in Psychology, based at the Institute of Psychiatry, Psychology and Neuroscience, which is a faculty at King’s College London. And so, day-to-day, I’m involved in both teaching, but mainly conducting research too. And I’d say that my research is mainly focused on, kind of, understanding atypical development in neurodevelopmental conditions and really across the lifespan. And the, kind of, particular conditions I would be most interested in is autism and, more recently, also ADHD. So I’m, kind of, particularly interested in looking at how people with autism and ADHD differ from neurotypical people in their, kind of, cognition and psychological profile and also in their mental health which, of course, is, kind of, the primary basis of the talk that I’ll be giving in May. And I guess, kind of, more fundamentally, one of the areas that I’m most interested in is really understanding resilience processes. So why is it that some individuals with these neurodevelopmental conditions like autism and ADHD have much better outcomes than other individuals and why do people’s outcomes differ so greatly? So much of my work is trying to, kind of, unpack what some of those mechanisms might be.
[00:02:40.720] Jo Carlowe: Thank you, but, Lucy, what motivated your interest in this field, what took you on this journey?
[00:02:45.810] Dr. Lucy Livingston: That’s such – it’s a really interesting question, which, kind of, gets me thinking back quite a few years now. I did my undergraduate degree in Psychology at Durham University and right up in the North East of England. And I’d say during that course I just got really interested in atypical development, so, you know, kind of, understanding why it is that particular individuals have inherent characteristics or may be have certain experiences that have just led them onto a very different developmental trajectory. And I was just absolutely fascinated with developmental psychopathology.
I’d then say it’s, kind of – after my degree, I got particularly interested in neurodevelopmental conditions and particularly autism. So, you know, I did some work in a special educational needs school with autistic children. And I then, kind of, went on to start working for the National Autistic Society, supporting autistic university students and I think that’s where I probably became most interested and passionate about improving outcomes for these individuals. So, you know, I’d meet lots of really highly intelligent, skilled individuals who were just not meeting their potential because of the way in which the education system and society is really predominantly set up for neurotypical people rather than people with neurodevelopmental conditions.
That, kind of, led me then to do my PhD, under the supervision of Professor Francesca Happé, really trying to understand autism and particularly, kind of, compensatory processes. So, kind of, the strategies that many autistic people use to overcome social cognitive difficulties. And, actually, kind of, one of the factors that we think now it might contribute to some of the high levels of mental health problems that we see in autism, and also, might be why there seems to be a whole generation of individuals who don’t get a diagnosis of autism until much later in life because they’ve been effortfully using these compensatory strategies throughout their life.
[00:05:05.620] Jo Carlowe: It’s so interesting. The JCPP Advances 2023 lecture series has the title “What the Research Tells Us: Anxiety, Neurodiversity, Suicide and Genetics.” I understand your focus would be on ADHD and autism, going back to the basics really, what is the prevalence of ADHD and autism?
[00:05:25.860] Dr. Lucy Livingston: So, I guess the first thing to say is the, kind of – the estimates are always slightly shifting, especially, kind of, in recent years there’s been much increased awareness of these conditions and therefore lots more people coming forward for diagnoses. So we’re always, kind of, working off estimates that are a little bit out of date. But we think that, kind of, broadly speaking, around, say, 10% of young people might have a type of neurodevelopmental condition and this can be lots of different conditions beyond just autism and ADHD. So also things like dyslexia, dyspraxia, specific language impairment, Tourette’s syndrome.
In terms of autism and ADHD more specifically, so we think that these are the most common neurodevelopmental conditions, the evidence seems to suggest around 1% to 2% of people have autism and then the rates for ADHD are a little bit higher than that as well. It really depends where you’re getting these estimates from, what kind of measurement tools you’re using and also the populations that you’re looking at. So most of, kind of, the prevalence research that we’ve done has really been done on individuals in, kind of, Western and developed countries, and we actually know quite little about prevalence in many other parts of the world.
[00:06:48.810] Jo Carlowe: Do you think prevalence has gone up in Western society and, if so, is that because it’s better recognised or has there actually been an increase?
[00:06:57.080] Dr. Lucy Livingston: Yeah, so it seems like diagnoses are definitely going up. So if you look at some of the metrics taken from diagnostic services in the UK, for example, we can see that there are an increasing number of diagnoses and particularly amongst girls and women who might be getting to a diagnosis a little bit later on in life. We don’t really know exactly why diagnoses are going up, it seems to probably be a combination of factors. As you say, definitely the role of increased awareness.
So, sometimes what happens is that you’ll have a parent and their child will get a diagnosis and then suddenly the parent starts reflecting on their life and their characteristics and then that parent goes on to get a diagnosis. But there are other factors as well. So, for example, the diagnostic criteria have also widened. So, if we looked at the, kind of, criteria that you needed to meet, say, you know, 20/30 years ago, to get an autism diagnosis, you’d need much severer symptoms that had a much greater impact on your daily functioning than you would need these days. So, it’s probably a combination of factors like that.
[00:08:05.069] Jo Carlowe: Hmmm hmm, thank you. Lucy, what can you tell us about neurodevelopmental disorders and comorbidity?
[00:08:10.199] Dr. Lucy Livingston: So this is, kind of, a really complicated picture and something we are starting to understand, but really there’s so much we don’t understand yet. So, the first thing to say is that we know that neurodevelopmental conditions themselves co-occur really highly. If you have autism, the chances of you, you know, meeting criteria for ADHD or at least having enhanced ADHD traits, it is much higher.
The problem really is that in research we’ve, kind of, dealt with these conditions quite separately. So, you know, you’ll have studies on ADHD and sometimes those studies will exclude anyone with an autism diagnosis and vice versa, studies on autism that exclude individuals with an ADHD diagnosis. So we’re only just really just starting to understand the fact that these conditions do co-occur really highly and we need to understand them more holistically at the same time.
But the other, kind of, major aspect, I guess, of comorbidity or co-occurrence, is that we know that if you do have a neurodevelopmental condition, like autism or ADHD, you’re also at much higher risk for a range of all sorts of different, kind of, psychiatric and mental health conditions, so depression, anxiety, the list is endless. And, again, estimates will really, really vary, depending on the sources that you look at. 50/60+% of people with a neurodevelopmental condition, you know, might also meet criteria for another psychiatric condition.
[00:09:46.200] Jo Carlowe: So, it’s really high. I want to focus on that, so let’s look at depression in ADHD and in autism, how common is it and how does it present and what does the research tell us about this association?
[00:09:59.610] Dr. Lucy Livingston: Again, without sounding really repetitive, the estimates do really, really vary, depending on what sources you look at. But, for example, one study on ADHD suggests that nearly 50% of individuals with ADHD will have experienced a depressive episode before the age of 30. We think as well that in autism, prevalence of depression is also really high. Typically, there is, kind of, a recent meta-analysis that suggests may be 10% prevalence in younger people, but then, these rates can, kind of, really escalate further into adulthood.
In terms of presentation, there’s some research on this which is, kind of, what we drew attention to in our JCPP Practitioner Review last year, but that we need much more research into it. But just to give a few examples, in the case of ADHD, our research seems to suggest that depression will be much more severe than it would be in the general population, onset earlier in late childhood, early adolescence, and the prognosis also looks worse in terms of, kind of, general outcome, self-harm, suicidal behaviour.
There are some particular features of ADHD, which might mean that they become particularly heightened in the presentation of depression, so things such as impulsivity and irritability. Irritability, in particular, is common to both ADHD and depression. So it might be that those features are, kind of, more at the forefront of presentation of a depression in ADHD.
In terms of depression in autism, we think that it probably onsets a similar age to the general population. So, kind of, early adolescence, and then rates really escalate across adolescence, so if you look at, kind of, longitudinal studies, rates just go up and up as you move into young adulthood.
Again, we have some, kind of, insight, largely clinical observation, of what depression might look like in autism. Sometimes people have talked about how there might be, kind of, autism-specific presentations of depression that you wouldn’t necessarily see in the general population. So, for example, autistic people often have a particular special interest and, in the case of depression, it might be that they have, kind of, reduced engagement with that special interest.
Some Researchers also suggest that there might be some particular features of depression that would be particularly prominent in autism. So one study found things like insomnia and restlessness would be – would really characterise depression in autism. But, as I say, lots of this work is really, kind of, clinical observation or small-scale studies and we need much more rigorous research into really what depression looks like in these conditions.
The problem is, is it’s so difficult to do this work because often it’s difficult to disentangle between the two. So, we know that there are some features of, say, ADHD which you also see in depression, and the same for autism and depression too. And so it can be really difficult to disentangle exactly what is the neurodevelopmental condition and what is the mental health condition.
[00:13:29.910] Jo Carlowe: Do you think it puts Researchers off going there?
[00:13:32.690] Dr. Lucy Livingston: I wouldn’t like to think so, but it does just make it a challenging topic because you need to think quite carefully about the best research design to disentangle those two things. And I guess, to an extent, it relies on having really rich datasets of clinical phenotypes where we can begin to differentiate between the two things. And, you know, those are sometimes difficult to come about.
[00:13:59.910] Jo Carlowe: Does the research say much about what mitigates against the risks?
[00:14:04.550] Dr. Lucy Livingston: This is something we actually, kind of, highlighted in our review is that there’s some research, you know, looking at – and this is kind – the main bulk of the paper that we, kind of, highlighted the various different risk factors that might be there. But actually, there’s almost nothing looking at prevention or resilience processes. So we don’t know why it is that there will be a subset of individuals with these neurodevelopmental conditions that will never develop depression or another mental health condition like anxiety. We have really, really very little understanding of those resilience processes.
[00:14:43.590] Jo Carlowe: Right, hmmm. I want – you’ve mentioned the paper a few times, so this was a review paper published in the JCPP, looking at the importance of depression in ADHD and autism. And in this, you highlighted that depression in neurodevelopmental disorders is rarely addressed in clinical guidance and research priority documents, why do you think that is?
[00:15:07.399] Dr. Lucy Livingston: There’s probably various different reasons. I think, primarily, you know, there’s been decades of really important research on autism and ADHD, you know, just answering basic questions, understanding the causes, the developmental unfolding, the outcomes of these conditions and this work has been absolutely ground-breaking. For example, we now understand a lot more about the genetic and environmental origins of these conditions. But, you know, this ultimately meant that how these conditions co-occur and how they work in tandem or are a cause or a consequence of other conditions like depression has just been quite neglected. This is something that really came across when we did our review of the literature last year. And so I guess it’s difficult to give concrete guidance because there’s such little research, and obviously we want the guidance to be evidence-based.
[00:16:04.019] Jo Carlowe: So, given the lack of clinical guidance, how currently is depression in ADHD and autism assessed and treated in young people?
[00:16:13.740] Dr. Lucy Livingston: From what we can tell, Clinicians are really just using traditional clinical guidance for treating depression. In young people generally, there isn’t – aren’t any kind of specific tailored guidance for how to diagnose and treat depression in ADHD and autism specifically. They’ll be using, kind of, the standard screening tools, standard procedures in terms of treatment. So, psychological therapies such as CBT and, in some cases, where – you know, where it’s really needed, medication, you know, fluoxetine is the main antidepressant that’s available to children, adolescents in the UK. And one thing that we did note in our review is that to our knowledge there were no randomised controlled trials on medication for treating depression in autism and ADHD, so we really have very little understanding of how well medication helps.
And in terms of psychological therapies, it was, kind of, a bit of mixed picture. So there are, kind of, some studies that have looked into therapies such as CBT and mindfulness and, kind of, more family-based therapies, but actually, much of this research has really been done on adults rather than young people. And some of this research has been more focused on targeting anxiety rather than depression specifically.
[00:17:40.450] Jo Carlowe: As we mentioned earlier, Lucy, you’re about to deliver a talk on “Depression in Autism and ADHD: What do We Know?” at the JCPP Advances 2023 Lecture series. Can you give us a taster of what you’ll be covering in the talk, together with a few highlights?
[00:17:57.440] Dr. Lucy Livingston: Only going to be a ten-minute talk, so it’s really going to be a bit of a whistlestop tour on the topic. But I hope that it will be, kind of, useful for just capturing where are we at and where do we need to be moving forward. Essentially, I will, kind of, present some of what I’ve already discussed today and the research evidence for it. So, how does depression manifest in these conditions, why might depression be particularly difficult to diagnose in these conditions, and also thinking about, kind of, what the research tells us about potentially some of the underlying mechanisms that might explain the link.
In our review paper, we outlined a few different, kind of, possible explanations for how it is that autism and ADHD might lead to later depression, based on the literature that’s out there. So, could be things such as shared genetics. So, for example, we know that some of the same genetic variants that contribute to the development of ADHD and autism also contribute to depression. But it also could be other factors that, kind of, mediate the relationship. So it might be that being autistic or having ADHD means that you’re more at risk for certain social environmental stressors, which then eventually promote depression.
So, for example, in the case of autism, there’s some research showing that bullying mediates the relationship. So, autistic people are more likely to be bullied and then this, therefore, it, kind of, leads to later. And then I guess beyond, kind of, a picture of what previous research has shown, I’ll also touch on some of my own empirical work on the topic.
One of the, kind of, biggest issues in this field of research, which I highlighted earlier, is that autism and ADHD have often been studied completely separately, despite the fact that they co-occur so highly. And so this means that, for example, if you’re looking at the link between autism and depression, you don’t really know to what extent any link that there is might be driven by co-occurring ADHD. So, in a recent study in collaboration with Researchers at the University of Bath, we, kind of, tried to better understand whether it’s ADHD or autistic traits that play a more important role in the development of depression symptoms. And so I’ll present some of that work.
Just to give a teaser, our main finding, quite striking really, is that both are important in the link with depression. But ADHD traits are actually a much stronger and more important predictor of depression symptoms and other internalising problems than autistic traits.
[00:20:47.390] Jo Carlowe: Lucy, what do you hope CAMH professionals will take both from this podcast and your upcoming talk? What would be helpful for them to think about?
[00:20:57.419] Dr. Lucy Livingston: The main message I think that would be really useful to get across is, is just how big the overlap is between neurodevelopmental conditions like autism and ADHD and mental health difficulties like depression. It’s likely that Clinicians are going to come across individuals that have some kind of presentation of both, and so, Clinicians need to be really careful when assessing individuals to try and disentangle what might be autism, ADHD and what might be depression or another mental health condition.
One of the recommendations that we make, from our review paper, is that Clinicians should be particularly focused on age of onset of symptoms when they’re trying to differentiate neurodevelopmental from depression symptoms. Because neurodevelopmental symptoms typically manifest much earlier in life, whereas mental health symptoms, such as depression, are more likely to arise in later childhood and into adolescence.
But, more generally, when thinking about assessment, I guess the take-home message is that Clinicians need to try and be really careful when assessing depression in people with neurodevelopmental conditions. The standard, kind of, measures that we have out there haven’t necessarily been validated for use in people with autism and ADHD. So it might be that scores are, kind of, heightened or actually there’s an underreporting of symptoms and so, yeah, professionals should just be really careful when interpreting standard depression scores. And also, kind of, trying to get as much insight as you can from as many informants as possible really. So, it might be that a child with a neurodevelopmental condition actually is underreporting their depression symptoms. So, kind of, having involvement of the parent and may be even Teachers, like, if you can get that as well.
I guess thinking about treatment, some of the evidence suggests that CBT, for example, might be beneficial, and particularly in autism for treating depression, but it might be that it doesn’t necessarily work in the exact same way that it would in the general population. So, it might be appropriate, for example, to think about tailoring CBT for autistic people who may have difficulties with self-insight, emotional regulation, things like that.
The final thing, when thinking about supporting and helping to prevent depression for young people with neurodevelopmental conditions is, you know, trying to make sure that these individuals are in environments where social stressors have been reduced, where they have good social support, you know, be that from friends or from a parent. And those could be some of the things that might help to prevent the, kind of, initial development of depression.
[00:23:57.100] Jo Carlowe: And what about policymakers, what message do you have for them in terms of learning from the research?
[00:24:03.320] Dr. Lucy Livingston: It would be great for, you know, policymakers involved in health policy and education policy to really appreciate just how considerable the overlap between neurodevelopmental conditions and mental health is. So, at the moment, many, kind of, clinical services, you know, often deal with the two things quite separately. So it might be that you have a child who has gone through the services to receive an ADHD diagnosis and then, in order to get assessed for depression, they, kind of, have to rejoin the wait list. And so I guess just having a bit more, kind of, joined-up thinking in terms of services, so that people with neurodevelopmental conditions, who we know are really at high risk of developing additional mental health problems like depression, that those individuals get the help that they need as quickly as possible.
In terms of, kind of, education policy, there’s a big move towards thinking of school-wide mental health and wellbeing strategies, which is really good to see. But thinking about how we can design some of those strategies, so that they would be most beneficial for people with neurodevelopmental conditions, who we know fundamentally are some of the most at risk, that would be really useful as well.
More broadly, thinking about prevention strategies. So, big-scale strategies that help to target things like bullying and social isolation and support young people’s academic competence and self-esteem, those are the types of strategies that will benefit all young people’s mental health, but could be particularly beneficial for those with neurodevelopmental conditions.
[00:25:44.110] Jo Carlowe: Lucy, is there anything else in the pipeline that you would like to highlight?
[00:25:48.919] Dr. Lucy Livingston: Really, an important aspect of my work and some of my work going forward is thinking more about resilience. We know at least something about the risks for depression in people with autism and ADHD, but we really do know almost nothing about resilience. And I think we can learn a lot potentially by trying to understand why it is that certain individuals, despite, you know, substantial family risk, maybe genetic risks, social stressors, why are there certain individuals that don’t actually go on to develop depression? I think better understanding of those resilience processes means that we could learn a lot from those individuals in order to inform future support for, you know, the individuals that are most at risk.
[00:26:38.800] Jo Carlowe: Great, and finally, what is your take-home message for our listeners?
[00:26:44.060] Dr. Lucy Livingston: We generally do just need much more research on neurodevelopmental conditions and mental health. We know, especially from just talking to people with neurodevelopmental conditions, how important it is that they get support for their mental health. So, often you’ll talk to a young person with ADHD or autism and they’ll actually tell you that, “I don’t mind, you know, the autism or ADHD so much, it’s the depression, the anxiety, that’s the thing that’s really holding me back.” And so, we need to be, kind of, listening to those voices and just generally have much more research focus on the links between the two.
But, of course, you know, this is challenging work, you know, this kind of research needs to be done longitudinally across time. You know, most of the research that’s been done is just cross-sectional looking at people at the same point in time. It’s difficult work, but it needs to be done. They are really closely aligned and, you know, people with neurodevelopmental conditions, like autism and ADHD, do desperately need much more support with their mental health in order to live happy and fulfilling lives.
[00:27:59.100] Jo Carlowe: Lucy, thank you so much. For more…
[00:28:01.900] Dr. Lucy Livingston: Thank you.
[00:28:02.900] Jo Carlowe: …details on Dr. Lucy Livingston and her upcoming talk, please visit the ACAMH website, www.acamh.org and Twitter @acamh. ACAMH is spelt A-C-A-M-H, and don’t forget to follow us on your preferred streaming platform, let us know if you enjoyed the podcast, with a rating or review, and do share with friends and colleagues.