Inspired by neurodiversity celebration week, we are starting a new series, Bridging the Gap! For each post, we will have a conversation with a woman in neuroscience to discuss the gaps and the health inequalities relating to different areas of neuroscience, as well as the exciting new research that is attempting to bridge these gaps. First up, we have Dr Jessica Agnew-Blais, Senior Lecturer in Psychology at Queen Mary University of London. In our interview, Dr Agnew-Blais shared with us her opinions and expertise on attention deficit hyperactivity disorder, or “ADHD”, and on the importance of investigating it more in women.
ADHD is a neurodevelopmental condition with both behavioural and cognitive characteristics. Its symptoms are broad, but the core traits are considered to be restlessness or hyperactivity, difficulties concentrating and impulsivity, although not everyone experiences all of these. Usually these characteristics are observed during childhood, which leads to the diagnosis of the majority of cases during the early years, especially in males. However, an increasing number of women are being diagnosed later in life, during early adulthood. This observation is slowly contributing to a shift in the conceptualisation of ADHD and it has highlighted the need to improve our understanding. The Medical Research Council (MRC) has recently prompted the initiation of new projects, aimed at further investigating ADHD. Dr Jessica Agnew-Blais is one of the MRC awarded researchers and talked to us about her work on ADHD in women.
Could you tell us about your research on ADHD and what inspired you to investigate this?
At the very beginning, I was investigating how ADHD changes when we grow up. I was working on a study called ‘E-RISK study’, which is a UK-based longitudinal twin cohort study that follows people from when they were born and assesses them at four different times during childhood. I was working with them when [the subjects] were 18 years old and we found that a lot of people that had met ADHD criteria at age 18 - showing high levels of symptoms and high levels of impairments - had not met the criteria when they were kids. This was very surprising because ADHD is supposed to have an early onset in childhood and having symptoms as a kid is actually part of the diagnosis. It was a bit of a mystery seeing all these people that seemed to have ADHD symptoms when they were young adults but not when they were kids, at least according to the parents and teachers that were rating their symptoms at the time. Interestingly, one thing that we identified about this group of late ADHD people, is that they tended to be women. So that’s what got me thinking: “What’s going on in women with ADHD? Are people not picking up on their symptoms when they are kids?” If we look across different population surveys, generally we do see more boys than girls being diagnosed during childhood. However, if we look during adulthood, the ratio is more even. That means that more women are diagnosed when they are adults and I really wanted to understand why this is the case!
So for part of my project, we will use longitudinal cohorts, based in Bristol, to look at the childhood characteristics of women that have a late recognition, or late emergence, of ADHD. The idea is to try and understand if there are things that could be identified in women with ADHD that are being missed when they are kids, or if there are any exacerbating factors occurring during teenage years that are making their ADHD more obvious in young adulthood. A second part of the project will then look in detail into adolescence and puberty. Using, this time, a US-based cohort, we want to understand: “Is there maybe a subgroup of girls for whom symptoms might actually get worse in adolescence?” Maybe there is! No one really knows or has looked at this before.
Finally, there is a third aspect of the project. The idea for it actually came from twitter, when I saw women saying that, at certain times of their menstrual cycle, their ADHD symptoms were worse and their medication didn’t work as well. I found that strange and I started looking if there was any research on that…there was nothing! I thought, “Well, that’s a problem!” So for this study, we will recruit women and follow them for three months while they do daily questionnaires about their ADHD symptoms and other related things, such as irritability, brain fog and fatigue. In the meantime, we will track their menstrual cycle and try to see if there are changes in the levels of ADHD symptoms and impairments across the cycle. Generally oestrogen declines during the menstrual period and low oestrogen is associated with lower dopamine availability. As we know that dopamine plays a key role in ADHD, and in stimulant medications, it would make sense that drops in oestrogen might lead to an impact on ADHD symptoms and medication.
You mentioned that, in general, boys are diagnosed earlier than girls. What would you say are the main reasons for such a big gap in ADHD diagnoses between men and women?
I think there are many reasons. One is that there is still a bias thinking that ADHD is a male disorder. I think that if there is a gender bias in how clinicians, teachers or parents perceive kids, this could lead to under-diagnosing some kids. For example, we see a tendency for girls with ADHD to have more inattentive symptoms or less comorbid conduct problems. As a result, these girls might be less troublesome and less disruptive. If you are a teacher and you are prioritising who to refer for an assessment, you might notice a really disruptive kid that is messing with the classroom rather than the daydreaming girl that maybe is not concentrating as much as she should, but is not creating disruptions. I also think there is a fundamental issue in a lot of studies in which the symptoms were described largely in boys. As a result, even the way symptoms are described could be gendered. We don’t know if, in girls, these symptoms reflect ADHD in the same way as in boys and there could be subtle differences in the way they are presented. For example, girls, driven also by some cultural expectations, may be more likely to express hyperactivity through talkativeness and verbal impulsivity, as opposed to physical impulsivity. The same cultural expectations may pressure girls to conform to a sort of level of agreeableness, especially maybe in the classroom. As a result, girls might end up making a lot of effort to mask their symptoms, compensate for them and be more social, and for this reason, people may not notice their ADHD as much.
How do you think delaying diagnosis affects how women experience ADHD and are impaired by it?
I think it’s a really profound problem. While I was designing this study, I talked to a lot of women that had been diagnosed with ADHD as adults but had received a lot of other diagnoses before, like for depression, borderline personality disorder or anxiety. This means they had to wait for years to be finally given a very effective treatment. I would say that delaying appropriate medications is definitely a negative effect of under-diagnosing women.
I also think that a lot of women developed a negative self-concept because they didn’t know they had ADHD. They would tell me they thought there was something wrong about them, or that they were a bad kid, or daughter or student, or that they were stupid and that they felt bad about themselves. They were kind of attributing all their symptoms to something negative about themselves because they had not received a diagnosis. Because of that, they had low self-esteem and maybe all these negative things about themselves, swirling around, were even contributing to the depressive feelings. A lot of women end up looking back and feeling sad for all the things they could have done, or done better, if they had had that self-knowledge and that treatment. I think there is a feeling of regret and sadness for their younger self that had not received the right support.
So, how do you think that research methodologies and questions could be changed to investigate, more accurately, ADHD in women and girls?
On a basic level, we have to make sure to include women and girls in the studies because, even now, sometimes that doesn’t happen and that’s a fundamental issue. There is also some work being done to adapt some of the questionnaires to be more appropriate for women. For example, a researcher from the Netherlands, named Sandra Kooij, is adapting for women some of the questions of the DIVA, one of the adult ADHD diagnostic interviews. One of the things she’s including in this interview is asking people what part of the menstrual cycle they are in. Because, if your menstrual cycle affects your symptoms levels, and you do the interview when you are at the lower level of your symptoms, it may not capture the full picture of what your symptoms are like. I thought that was very interesting because, for my study, I was thinking about how people that had already been diagnosed are affected by hormonal fluctuations, while she took it a step further saying even when you are assessing somebody, you might want to know what part of the cycle they are in.
Then, in terms of issues that are relevant to women and should be taken into consideration investigating ADHD, one thing that comes up a lot is pregnancy and the pre- and post-natal period. Oftentimes, women are advised to stop their medication when they are trying to get pregnant. For people that have been relying on medication for a long time, that could be very difficult and they are not really provided with a lot of other means of support. On top of that, getting pregnant could take a long time, and with the 9 months of pregnancy and the breastfeeding period, it could add up to years with women not getting their treatment and this is not something that has been very well addressed.
Another noteworthy thing is perimenopause and menopause. A lot of older women I talked to felt like the hormonal changes during that period were exacerbating their ADHD symptoms. This is completely under-researched and I hope to look at these symptom changes during the menopausal transition, with a new PhD student, because this was the number one issue raised by the women I talked to. In general, I would say that these things that are more ‘women-specific’ just aren’t investigated in ADHD research, which is actually common to a bunch of other health issues.
You talked about how women might not show ADHD symptoms during their childhood, how hormonal factors could influence that and how current diagnostic tests might not be able to pick up on this. You also mentioned women being asked to stop taking medications during pregnancy. So in relation to these things, how could clinical and diagnostic practices be modified in a useful way to address women?
I really wrestle with the requirements of childhood onset. People may be looking for a diagnosis when they are adults, and some clinicians ask for their primary school records, or to talk to their parents or their teachers. Maybe the patients are 50 years old, they can’t provide those written records or evidence anymore. I understand that if they never had any issue for all their life and suddenly they do, the clinician might want to check for other neurological things but I don’t think it’s very useful to ask for evidence that other people thought they had ADHD as kids, because teachers and parents might not have noticed. We know that, and the thing that is frustrating, from the perspective of a researcher, is that a lot of these things that we know, don’t necessarily get translated into a clinical environment. For example, I was talking to a student who waited for ages to get her NHS assessment for ADHD and she was told she could not have ADHD because she went to university and had a master’s degree. That is absolutely not true! I hope, with this new research, to have an element of clinical education, not only for the end person that is doing the assessment, but also for the GP and for the people earlier on that have to do all these referrals. Just because someone is functional, it doesn’t mean that they are functioning the best for themselves or that they are not struggling. Just because ‘on paper’ a woman made it to university, that doesn’t necessarily mean she can’t have ADHD. I find that so frustrating and I understand, on some level, why the childhood onset criteria is there, but I don’t know if there is much utility for it, and denying someone treatment because they don’t have teacher reports (saying that they were hyperactive) is not a good strategy.
Would you say that the general understanding and perception of ADHD is changing lately, and if so, how?
I think there is a better recognition, now, of the fact that girls and women can have ADHD. A lot of studies that looked at medication use found that there are a lot more women getting prescribed with ADHD medications than in the previous years. I also think now ADHD is not necessarily viewed as a deficit. It’s not to say that people might not need support and treatment, but I think the whole neurodiversity movement started an important change in saying, “We don’t need to be fixed, there are things in the environment that can be adapted better for people with different neurodiversities''. Also, I think it’s really good that now a lot of funders, like UKRI, require that you have people who have lived experience as part of designing your research. I have a panel of women who have ADHD who advise on the questionnaire and the study design. It’s amazing, they are just fabulous and so insightful. The research has so much improved by incorporating the thoughts and the feedback of women who actually have ADHD. It is a key, positive step to involve them, because you don’t want to do some research that is not going to end up being relevant to people, asking the right questions or asking them the right way.
Speaking of research, what do you think are the most exciting future prospects that you can see happening in ADHD research?
I think it’s important to investigate more time and hormonal transitions. There is also an exciting, growing recognition that we need to study more ADHD in adults. For example, I am working with a colleague in Edinburgh to research neurodivergent parents and how being neurodivergent can affect your parenting. A lot of research tends to be about the kids and it ignores the fact that those same people with ADHD grow up. In general, I would also say that we used to think of ADHD as very static. However, increasingly, we are seeing more work looking at how much symptoms and impairments can change depending on the context and the demands that are placed on the person with ADHD. For a long time I think there was a bit of a pushback against the idea that context can matter. One of the reasons for this may be that, before, a lot of people wouldn’t believe that ADHD even existed, so researchers and clinicians were trying to address this by saying, “No, it’s a brain disorder, it exists and it doesn’t change ''. Instead now, we are recognising more and more that yes, it is in the brain but that doesn’t mean that the social context you are in, or what you are experiencing, or where you are in your life - for example, if you are going through an hormonal transition - all these things, can impact you, your symptoms and your functioning. I would say this leads to an interesting and new complexity around ADHD and ADHD research.
Thank you, this was all very interesting and insightful. I would just like to conclude by asking you, what advice would you give to women that have just been diagnosed or are attempting to receive a diagnosis?
My first advice would be: if you are attempting to receive a diagnosis, don’t give up in the meantime, because it can take a long time. A lot of women I talked to, even after getting a diagnosis and maybe some medications, they didn’t necessarily feel like they got a lot of support after that. They told me: “I didn’t feel like I had a roadmap for what to do'' or “I learned more from this Facebook group of women with ADHD than I did from my clinician”. Indeed, a lot of the support that women get comes from other individuals with ADHD through, for example, blogs, groups and podcasts that help them with practical advice, strategies and insights. It is super useful to have these less formal kinds of support and this community that offers both emotional and instrumental support.
This article was written by Caterina Falvella and edited by Rebecca Pope. Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch!
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