Transcript
Professor Sven Bölte So, this is so-called Child Psychology and Psychiatry Annual Research Review. So, technically, it’s an invited article, it’s a narrative scoping review where experts in the field do a state-of-the-arts overview, and in this review, the objective was to describe to the readers what is consensus and what are the new leads and what are the outstanding research questions in ADHD research, but also, practice and society? And the article is quite rich, when it comes to the scope and the depth of looking at this area. So it includes genetic and environmental factors and influences on ADHD, and the developmental course and co-occurring conditions, and also, brain processes. And it was a team effort led by Edmund Sonuga-Barke, and my contribution was mostly describing the current evidence and practice and ongoing discussions in the area of the functional impact of living with ADHD, including what we call impairment, quality of life and stigma [pause].
So, the section that I participated in was on the functional impact of living with ADHD. So, it concerns what does it mean to live with ADHD in terms of activities, the social participation and also, the environmental barriers and faci – the facilitators and wellbeing? So, traditionally, we have looked at ADHD mostly from the perspective of symptomatology or a, kind of, psychopathology and this section that I worked with was mostly, kind of, trying to widen this rather, kind of, narrow view. Because we, today, want to understand, kind of, what it really means in terms of all the biopsychosocial aspects of ADHD and living with the condition. So, it looks at more the – the focus in this section is on the real-life issues that matter for people with ADHD each and every day and also, in the long run. So, it tackles mostly the impact of ADHD on, kind of, how you do in school, how you do in leisure, how you do with peers, how you do in the workplace and how society encounters you and how you live with it. So, that’s what the section is about [pause].
There’s quite a lot of evidence in diff – for different life domains and the interplay between an individual and the environment that the individual’s living in, and these are the major ones family, social life, school education, work, leisure. And there’s some specific results that we know that where we have a risk in ADHD. For instance, there’s an increased risk for accidents, an increased risk for gambling, also for criminality, for teenage pregnancies and unfortunately, also, to – for premature death. And these increase in risks can be seen across cultures and mostly also across the lifetime, and it is aggravated by the existence of co-occurring conditions and also, the existence of somatic health problems. So, that’s more the aspect of the functional impact.
And then, when it comes to wellbeing, we know that quality of life is low in ADHD than compared to the general population and it’s also sometimes lower compared to other somatic complications and to other mental health conditions, and even family members can have – can experience lower quality of life. So – and interestingly, when we look at gender differences, sex and gender differences, we can see that females mostly have a little bit less of impairment from the ADHD and we think that mostly has to do with that they are better at both coping and hiding the impact of ADHD, but it also comes with a cost. So, we have more internalising issues in ADHD in females, such as anxiety and depression.
So, we talked about the, kind of, functional impairment and also, quality of life, and a third issue is the stigma, which is quite a huge issue in ADHD, and it’s both a stigma that comes from society, but also, can be put of – on the individual, kind of, him or herself, and stigma is a negative stereotype or a prejudice. Just because you have a diagnosis or that you are associated with a certain diagnostic label, and that can be associated with discrimination. So, self-stigma, then, is when you, kind of, downgrade yourself, in view of a certain diagnosis and internalise stigma, internalise the stereotypes that society has generated, which can lower your – the respect for yourself, and this can also appear in families. So, when – in families who have children with ADHD, they can maybe also sometimes have this self-stigma within the whole family. And we – the other things at the moment that we discuss in terms of terminology, for instance, just using the word ‘patient’ when you have a diagnosis of ADHD, that can also be something that fuels stigma. So, we also discussioning terminology quite a bit today [pause].
I would like to start pointing out that I have a little bit of a bias here, because that’s a research area that I’m quite engaged in. So – but we have mostly used diagnostic systems working with ADHD, so the DSM-5 and the ICD-11, and these additional medical systems, and they still dominate how we look at and deal with ADHD. But there’s now, I think, an important shift going on that we are trying to use a more, kind of, biopsychosocial model of ADHD and this is endorsed by the WHO classification system, ICF, the International Classification of Functioning. So, that’s something that I think is an ongoing development.
And consistent with this development, we also see that we maybe need to redefine our – the outcomes that we use, for instance, in intervention studies, where we mostly have used, kind of, symptom reduction as an outcome. But for most people with an ADHD diagnosis, symptom reduction is not particularly important for many people living with ADHD. It’s more important to see how an intervention can positively affect their level of, kind of, adaptive abilities and their quality of life and their social participation, and also, if they can achieve their personally meaningful goals. So, these are things that are ongoing.
Another issue is the vital discussion that we have around neurodiversity. It’s also, kind of, a – it’s a paradigm that tries to balance out the biomedical view of ADHD and in this paradigm, ADHD is viewed more of a natural and a neurological variation and an expression of diversity. So, that’s something that is an ongoing discussion and finally, also, we have the issue, where exactly does impairment begin in ADHD and how is it defined?
So, it’s a little bit hard to draw an exact line and make a cut-off where does ADHD begin in terms of functional impairment, and where does it end? And what is due to a person’s dispositions and what is – and which part of the impairment is more because society is not approaching an individual in a balanced and equal way? So, there’s no real clearcut where ADHD begins in terms of functional impairment and that’s an issue that we’re working on a lot at the moment [pause].
Yeah, just – I just mentioned the neurodiversity paradigm, which it, kind of, indicates a certain paradigm shift in the way that we look at and deal with ADHD. And there’s also some claims made by the neurodiversity paradigm, for instance, that ADHD is connected to a certain strength, sometimes also called, you know, superpowers. Kind of, that there is a huge potential for creativity and huge potential of energy, and – but at the moment, we are struggling a little bit with the evidence for these claims. So, it’s an open question if they do exist, these specific strengths connected to ADHD, and if they are really superior to what we can see in neurotypical development.
On the other hand, there’s – it’s no questions – no question that individual strength do appear in people with ADHD, this despite their ADHD, and that we need a more balanced view of individual strength and challenges in ADHD. So, I think there’s an agreement that we need a more strength-based approach to ADHD that is trying to develop the skills of people and looking more at opportunities, and not only looking at deficits and things that do not work out.
Then – and the same is also true, not only for addressing the individual, but also for looking what the environment can do to make the lives easier for people with ADHD. So, how can society better understand ADHD and accommodate to individual prerequisites of people and trying to move – re – just trying to remove barriers that there are? And well, furthermore, there’s also – also, I’m not exactly clear what the effect of diagnosis is on stigma. For some people, a diagnosis key – can be something positive. For others, receiving a diagnosis can be even more stigmatising. So, it’s probably very much dependant on the context and the person, and we need more research here in terms of how stigma is perceived and built in ADHD.
And then, a question that many people have an interest in is how sex and gender relates to ADHD, and what other – if there are any interactions between ADHD, sex and gender and for instance, functioning and quality of life, or for – and for instance, if stigma is differently developed and experienced by females than males. And these are open questions that we are interested in, and I think many people in society are also interested in.