Transcript
Dr Lotta Borg Skoglund “ADHD in Females The Perfect Storm?” These are my disclosures, and you can, of course, view them in more detail when you get the PowerPoints after the presentation. This is also another conflict of interest or maybe more of a shoutout that I would like to make you aware of my book, “ADHD Girls to Women.” It’s a comprehensive overview of the research so far, also written together with my patients, a lot of females with ADHD and of their life stories. It’s a book very, very close to my heart.
But today, we’re going to talk about four different themes, four different focus the agenda today. Some kind of background and about hormones and about the brain, and I will go quite fast over these two areas to focus mainly on ADHD in females and then, the take home message after the talk. I will hope you will enjoy it and that you can also perhaps access the slides if it’s too fast. So, why female ADHD? Well, when I wrote this book in Swedish four years ago, I realised that the interest, in Sweden, anyway, was huge and it seemed like it was in other countries, as well, because it’s been actually translated now into four or five different languages. And it’s coming in November in English, so I’m very, very happy and proud about that.
But what about ADHD? Well, why focus on ADHD? Well, I think this quote from the French Philosopher, Albert Camus, kind of, sums it up really well and especially when we talk about ADHD in girls and women. He says that “Most people do not understand that some people use enormous amount of energy just to be normal. And on that, kind of, theme, I think so many of the women that I meet actually speak and that was actually what made me write this book.
So, why don’t you see me? Well, Susan Young wrote an international consensus paper, together with other authors, on female ADHD. She says, “Many of these girls, they feel like life is an uphill struggle, that “I’m trying to find myself, to be accepted and to fit in, to – that I camouflaged, and I cover up my impairments with bravado and I don’t get detected.” So, what I need here, I will be – life skills, critical reasoning, problem-solving, coping strategies, and what should we do if we don’t attack, if we don’t find the girls?” Well, we have to try anyway, because we can’t leave them hanging. We already know way too much about how this ends, and this is what this talk is also going to be about.
And why did I get interested in this topic? Well, it’s actually a lunch that I had with a colleague, a Gynaecologist of – colleague of mine, called Helena Kopp Kallner, also my – I call her my fellow ‘research wife’ in our research group, GODDESS ADHD. And we were talking about a group of females that Helena met in her practice, in youth clinics and in the gynaecology clinics and that – when she talked about them, about this frustration about a group of women that did not really listen to what she had to say. They did not adhere to her treatment and she said, “It’s like they don’t even want to listen. It’s like they – what – they almost want to hurt themselves, and they say that they don’t tolerate hormones and that they tol – don’t tolerate the contraceptives that I prescribe. And I just don’t believe them because everyone knows that, you know, you don’t get depressed by hormone contraceptives. That’s just a myth.” And I was listening to Helena, and I thought this sounds a lot like the women that I meet in my ADHD clinic. So, we were discussing back and forth, and we said, “We need to put these, kind of, myths and these questions that our patients and the girls and the women that we meet actually tell us to a test.” So, this is a lot about the research that I’m going to present to you today and what our research is actually about.
So, same-same but different. Well, ADHD is the same diagnosis in girls and boys and females and in males, but the symptom display can be different. Sometimes we have to view more of the impairment than the behaviour when we look, at least at the younger girls. There are also biological differences, that’s hormones, we’re going to talk about that soon, and different, actually, social expectations of girls and boys and of females and males. We’re going to talk about – a little bit about that, as well. And we have to realise that half of our population does not just imagine that things are in their head, certain times of the month or certain periods in life, that hormones do affect a lot of our mental health and actually, also, our everyday functioning. And due to the limited knowledge about this, girls and women keep being un or misdiagnosed for a long time.
So, the thing that Helena and I realised when we started talking about this group of girls and young women that we meet, her in her women clinic and me in my psychiatric ADHD clinic, we thought that if we can help these women because they struggle so much and they never seem to fit in anywhere in the healthcare system and they search and search and search for what’s wrong with them, if we can help them, we can actually prevent them – prevent a lot of the negative outcomes associated with undetected or actually diagnosed ADHD in girls and women. We can affect and influence mental health outcomes in generations to come, because this is not just a matter of that particular young woman. This psychosocial negative outcomes is actually transmitted across generations. So, I think here I have actually found the most important area of research in psychiatry, but of course, I’m biased.
So, we want to – I want you to meet, actually, Lou, Anja, Mia and Ella. We’re going to use them as example for ADHD in different stages of life. But first, ADHD. That’s a, kind of, a controversial diagnosis, in Sweden, anyway. Why is that? Well, it’s very prevalent. From 2-3% in older adults, two up to 9% in children and adolescents. It’s persistent, 50-75% of children fulfilling the diagnostic criteria will keep having impairments as adults. It’s pervasive across generations, as well, so 80% of the liability or the heritability around ADHD is explained by genetic factors, and it’s problematic. We look at 30-80% of adult people with ADHD, fulfilling at least one other comorbid disorder, and both psychiatric and somatic disorders. And ADHD is associated with an eight-13 years reduced life expectancy if you don’t get the diagnosis and the correct treatment.
So, Helena and I founded our research group. We call ourself, very humbly, the ‘GODDESS ADHD’ and it stands for “Gender-informed research to Overcome Diagnostic Delay & Emotional dysregulation through Self-awareness and Self-efficacy in female ADHD.” And we are a multidisciplinary collaboration looking for more collaborations. So, please reach out to us if you are interested in this field. We think that females are especially well adapted or – and well suited to actually collaborate in research that – so, it is a fun group.
What have we done so far? Well, we have shown and – that female ADHD is associated with multimorbidity, healthcare – increased healthcare utilisation and polypharmacy. Sexual risk-taking, challenges in reproductive counselling, five times increased risk for depression following hormonal contraceptive use, six times increased risk for giving birth when you are still just a teenager yourself, or a kid yourself. Risk pregnancies, smoking duration pregnancy, prematurity, postpartum depression, comorbid anxiety and borderline disorders and this diagnostic delay of four years. So, this is what we have done so far, and we are just getting started. This is us and we have, also, onboard, Professor Lisa Berlin Thorell from Karolinska Institutet and our extremely talented Postdoc Researchers, Niklas, Darko and Hedvig.
But now, I would like to introduce you to Lou, Anja, Mia and Ella, and we can call this a clinical phenotyping. And I will introduce to you, also, the notion of digital phenotyping later on in this talk. But Lou, and I think you know of Lou if you have and you know a girl with ADHD or if you work with ADHD. She’s eight-years-old, she’s very shy and compliant in school, but when she comes home, literally meltdowns on her parents, on her siblings. She also has this feeling of it – and struggling very much socially. She al – she often feels rejected, she often feels like her peers are not letting her into their community and their – what they’re talking about. She suffers a lot from a general anxiety, a bit of an OCD is developing, and her mother is really psy – anxious about that now, and she’s – has had difficulty sleeping since she was an infant. She often complains about stomach ache and headaches and she has a really low self-esteem.
So, then, Anja. She’s 19-years-old. She comes to my practice because she is very risk-taking. She has had a lot of abortions already, a lot of conflicts at home, worried parents, doesn’t’ feel that they reach her. She also ends up in a lot of conflicts with her peers. There’s been a lot of bullying going around Anja, actually. She suffers from anxiety, depression and actually, eating disorders. A lot of somatic complaints as well, pain, a lot of fatigue and she’s also a low, low self-esteem. It’s not apparent, actually, always, to the people who meet her because she comes across, like, very self-confident, but she’s not.
And then we have Mia. She is 47-years-old. She’s always assigned the role of the Project Manager at work because she is so – she has her ‘shit together’ as she says. However, at home, she feels like she’s failing as a parent, she’s failing as a partner, she’s no social life, she has a lot of burnout, and she’s started, actually, the last couple of years to use alcohol when she comes home from work to wind down and to self-medicate. Also, a lot of somatic issues, IBS, PMDS, fibromyalgia, also, a very, very low self-esteem, although she is such a good girl at work.
And Ella, she’s 73-years-old. She has struggled with academic underachievement and a non-existing social network her entire life. She always feels excluded and she has very, very limited contact with her kids and her grandchildren. Suffered from anxiety, depression, lone – oops – loneliness her entire life and now she’s very worried that she is developing dementia. She has metabolic syndrome and type 2 diabetes and also, struggled with substance use disorders across her life and also, very low self-esteem.
So, all of these women, different part of their life, they’re – are talking about what I used to call the ‘broken record syndrome’. They know that they are struggling with stuff, and they know what they should do, but they just can’t do it. And we have to agree, I guess, that ADHD’s a serious condition with a good prognosis, but there are so little research and almost no tool for female specific challenges. And as we talked about before, without the diagnosis, without the proper treatment, eight-13 years of reduced life expectancy due to ADHD and comorbidity.
So, I would like to introduce to you a concept that I call, very cheesy,
7’ because ADHD doesn’t take naps, it doesn’t take holidays, it doesn’t take vacations, it doesn’t even take lunch. So, this is how I talk to my patients about how – what ADHD is and how it affects your life. And just to have these, kind of, cheesy remembering rule around our talks makes it possible, also, to get back in the next session to see where are we and are we going in the right direction? So, I will just very quickly introduce you to ADHD 24:7, the base, the ADHD phenotype or the – and the life around ADHD.
So, the first one, the 2 in the 24:7 model would be what everyone needs to be able to talk about mental health. Doesn’t matter, really, if you have ADHD or not, because you need a tribe. You need a social context where you feel like you can express your needs and your emotions without being judged and that someone knows you and cares about you. And you need a purpose. Your life has to have a purpose and a goal and you need to – someone – something that is bigger than yourself to set your goals towards. And a feeling that you are contributing to a greater good, something that is bigger than yourself.
ADHD phenotype, what is that? Well, that is what we can think about when we think about neurodiversity and what is actually the brain is struggling with when you have ADHD. So, what ADHD is, and for many women, in particular, a problem of overviewing life. A Psychologist would call it executive functioning, central coherence, but I call it the control tower in the airport. The organising, planning, prioritising and getting started, finishing up in time. That, kind of, frontal lobe functions that people with ADHD struggle with so much. And we also struggle with the internal volume button, what Psychologists would say about – call, perhaps, emotional regulation, delay aversion, but what ADHD people may call problems regulating the volume button in brain areas involved in not only hyperactivity, but also energy, appetite, sleep and emotions, of course.
The next area in this four phenotype of ADHD, 4, is the brain’s ability to filter out information, perception, sensation, sensation overload. “To live with a brain,” as someone of my patient said, “is like living with a brain like a hard drive without the virus filter. Everything just gets in,” and also, everything from your own body. So, your body and your surrounding keep sending you cues all the time, and all this has to be processed and you get really, really exhausted and distracted. And the last part – area would be to shift focus, and what the psychology, perhaps, would call cognitive flexibility or metacognition, but the ability to stop ruminating and the ability to stop doing what you’re doing because you have to do something else more important right now.
And the 7 in that 24:7 model for ADHD would be the seven lifestyle factors that is actually, showed by research, associated with the morbidity and the mortality of ADHD. Strategies, skills for routines around diet, exercise, sleep, stress and recovery, emotions and relationships and different kinds of addictions and the structure in life to get your economic situation and your medical situation under control. So, this is my 24:7 model that I wanted to introduce you to and that I work with my patients and who seem to actually like that. And it’s a very visualised way of actually working with the everyday things around ADHD that – keeping in mind that every brain’s unique and that everyone’s ADHD is unique.
So, then, we will just shortly go into some facts about hormones and then, we will dive into the area of ADHD in females, specifically. Hormones, symptoms, sexual health and pharmacological treatment across the cycle and across the lifespan. So, we will be talking about hormones, when it comes to females, that are changing when we enter puberty, and we are talking about PMS, PMDS, we’re talking about special occasions like pregnancy and postpartum, perimenopause and menopause. And what hormones are we actually talking about?
Well, we’re talking about oestrogens and there’s a whole family of oestrogens involved in everything from pregnancy to breast development, circulation in your heart, your skeleton, your skin, your mucosa, your libido, your sensation of pain, memory, mood, sleep. A lot of things that oestrogens are involved in. And we have progesterone produced in the corpus luteum, involved in also pregnancy and breast development, the skeleton, again, the blood pressure, the libido, PMS, PMDS, emotional regulation and memory.
And the problem is not the hormones per se, but the thing would be that for females, these hormones are fluctuating. And they are in a certain hormonal status before puberty, and then you have a cycle that you’re cycling the entire menstrual cycle, where if we look at the menstrual cycle in 24 days, that is the, kind of, average menstrual cycle, you would have a phase just when your menstruation starts, with increasing oestrogen levels. Progesterone levels are still low. Oestrogen levels will increase to prepare the ovaries to release the egg at – on day 14 and ovulation. At that day, oestrogen levels are peak and then will back down to a lower and stable level for the rest of the menstrual cycle. Flo – from day 14 to the next menstruation, progesterone levels will steadily increase, creating an entirely different hormonal situation for that particular women. And if we don’t ask our patients in what phase of their menstruation cycle they are, we will, as we will see soon, have quite slim chances of getting our medical decisions right.
This is what it looks like for oestrogens fluctuating across life. Starting in puberty, oestrogen levels start increasing. During menstruation, heavily fluctuating. Pregnancy, huge boost of both oestrogen and progesterone and then, again, cycling towards perimenopause and menopause around age 51. And I will not have time to go into all these studies, but I wanted, anyway, to put them up here in the presentation for you to read up on it if you’re interested. But there are a lot of studies coming out now showing that ovarian hormones, like progesterone and oestrogen, actually shape lane – brain plasticity during our reproductive years and we’ve not been able to show that before. It’s mainly been shown in animal studies. So, that’s really interesting.
We want to understand the key areas where oestrogen and progesterone receptors are affecting the brain, different brain processes. And we want to look at the frontal cortex, a very important area for ADHD, where dopamine receptors are very prevalent. We talk about control, inhibition, organisation, planning and prioritising, that are processes that are governed from the frontal cortex. We’re also interested in the hippocampus and the thalamus for arousal, memory, body temperature and sleep, and the cerebellum for motor co-ordination and for compulsions. So, there are a lot of overlaps of the areas that we are also interested in when it comes to ADHD.
So, just to sum this up, mental health and hormones. For Lou, Anja, Mia and Ella that you just met, they all have increased risk to develop stress, depression, anxiety, abuse, binge eating, psychosis, mania and suicide in certain phases of their hormonal lives. Still, almost no-one asks them about their hormones when they struggle with mental health issues and when they seek our consultation for their problems, and that is a huge problem when it comes to female mental health and when it comes to female ADHD, in particular.
So, with this, kind of, short and very brief and very fast overview of hormones and the background, I would like to proceed into the main area for this talk, “ADHD in Females: From the Cradle to the Grave,” and a story about Eddie and Anja. And a research study done where Researchers wrote a vignette about a boy called, we can call him Eddie, with ADHD, and handed that story out to Teachers, parents and healthcare professionals, asking them why they thought that Eddie was struggling so much. And perhaps not very surprisingly, both the parents, healthcare professionals and Teachers said that “Well, probably Eddie has ADHD.” Okay, “Eddie has ADHD. What should we do for Eddie, then?” “Hmmm, yeah, maybe he should have an assessment and maybe he should have, like, eviben – evidence-based treatments.” There is, like, a rationale for this, right?
So, not very surprising up until then, but the thing is where – when the Research Team edit out just the name Eddie and exchanged it to Anja instead. Handed it out again to a new population of Teachers, parents and Researchers and asked them, “Why do you think Anja is struggling so much?” Remember, the exact same vignette. They were very much more curious. They wanted to know much more about Anja and her background and her peers and her relationships within the family. Okay, so it was really tough for us to pinpoint what Anja’s problem was and then, again, asking, “What should we do to help Anja, then?” Anja was recommended speaking to, perhaps, the School Curator or perhaps speaking with her peers or talking to her mum. So, a lot of talking, but a lot of time until someone actually suspected that Anja could also have ADHD. The exact same story.
I think we need to have that in our – in the back of our head when we look at the research and we – when we meet our patients today, to be able to detect and to identify and properly help the girls sooner. Because girls with ADHD, I, usually, I call them the invisible children, but they do have hyperactivity and impulsivity. It’s – but they have a different symptom display. So, their hyperactivity are more about the emotions and their impulsivity may be more in a verbal sense. They do have problems, even though they’re not on our radar yet. They do express stress, social exhaustion and academic failure and they start very early in life to develop a low self-esteem. Bullying, much more common if you are a girl with ADHD.
And of course, these small invisible girls, they start and they try to handle their situation. They look for explanations and they end up perhaps overweight, struggling with eating disorders, start smoking and using alcohol at a much earlier age than their non-ADHD peers. And then puberty, a period of extreme hormonal changes, kickstarting the development for our female characteristics. There are neurological changes and there are social challenges and changes, as well. A very transformative period, and these small girls with ADHD, often then undetected, they grow up to young women with ADHD. We talked about the persistence of the diagnosis before.
And ADHD and comorbidity, what do we know? Well, we know that many girls and women are undiagnosed and that we mis – or now that we misunderstood their symptoms. That their symptoms may change with age and that they use a lot of compensatory strategies and masking. Talking to females with ADHD, that is a core theme in their life, trying to hide the secret of them being deviant in – and trying to avoid being exposed by others as being not normal, and they develop the comorbidities. So, the young women with ADHD, the theme there would be comorbidity and risk-taking. They will perhaps not seek up our help with – asking us if they have ADHD, but rather, with depression, anxiety and eating disorders. They’re more susceptible to addiction and to trauma and sexual risk-taking, teenage birth.
And the problem is that the comorbidity chart for them, it’s very messy and it’s hard for them, as for us, as Clinicians, and for parents, to disentangle what is what. But this is the situation, and this is actually not a very unusual patient, having all these different comorbid conditions during their adolescent and young adult life. So, we did a study, we call it ‘Time after Time’ and it’s just been accepted for publication in JCPP, and we are looking at the diagnostic delay in female ADHD. We know that females were twice as likely to be diagnosed with inattentive ADD and that this less disruptive presentation of ADD – ADHD might be more difficult for us, as Clinicians and parents and Teachers, to detect. So, we looked at the age of ADHD diagnosis or ADHD-index in a Swedish regional healthcare register, aiming to establish age at ADHD diagnosis in females and males and also, looking at differences in comorbidity, treatment or healthcare utilisation around the ADHD-index for ADHD females, for females without ADHD, and for ADHD males.
And looking at our data, we can say that Anja, she will get her ADHD diagnosis four years later than Eddie. She will also have a high burden of comorbidity and healthcare utilisation than Eddie, and again, we will see the pattern of a girl move around in the healthcare system, not being recognised, being referred to, or seeking out, different parts of the healthcare system without being properly identified and diagnosed.
So, in our research group we started out at the youth centres. I told you about this – how our research interest came about. Meeting Helena Kopp Kallner, who is a Gynaecologist and realising that we actually saw the same patients. We saw the same girls and adolescents. So, we thought that youth centres might be a good place to detect our ADHD girls and young women. So, we started out with a study where we did interviews with Midwives working at youth centres, and we heard, or they told us, that they failed, they thought, themselves, to offer timely and attractive interventions for these – this group of women. They didn’t know how to follow-up and to evaluate their interventions and to plan and to know what they were doing was actually working. So, they doubted that the information that they delivered to these girls, kind of, came through and they did not really know how to consult them about proper medication, contraceptives and other medications.
The standard. They said that they did a lot of things already when they identified that the girl might have ADHD. So, they adapted the room so it was less distracting, and they can also have, like, flexible opening hours for the females that – with ADHD that had difficulty meeting appointments. But what they wanted, they wanted much more, and they thought that much more could be done, and they told us that they wanted clear guidelines. “How should we treat this? How should we make sure that what we do is actually effective for these women? We would like to have screening tools at the youth centres to detect these women and we want increased knowledge,” knowing that the Midwives on youth – in youth centres are not – they don’t feel that they’re properly trained to detect and to support a female with ADHD.
So, a very important and interesting study to start off with, realising that there’s a lot we can do right now just spreading the knowledge about female ADHD to the people that actually meet them in clinical practice. And Anja told us that she couldn’t stand the pill and that hormones made her ‘crazy’, and that was a thing that Helena and I debated about in the beginning of our research. So, we wanted to check for that assumption. So, the next study we did is a large National Register-based study on ADHD and female pregnancies, because we know that teenage pregnancies is associated with long and short-term adverse outcomes for both the young mother and their – and her child.
More specifically, the mother, she risks low educational attainment, being a single parent and being in increased need of public assistance. And the child, you can see that children to very young mothers, they are at increased risk for perinatal morbidity, mortality, low socioeconomic status and quality of life when they grow up. And in Sweden and in the Sweden youth centres, we have worked very efficiently with these – with trying to reduce teenage pregnancies due to these problems. And we have numbers that decreased from about – around 15% in the 1970s to around 2% today, one of the lowest rates internationally. So, very much to be proud of, but what Helena and I was wondering, knowing these group of females that we meet, we thought, are we really reaching out or reaching all females, and what about females with ADHD?
So, we looked at this in a Swedish National Register and we saw that the overall teenage rate was about 3%, so about what we know it will be, but it was way more common in ADHD. Actually, about the rates where we were in the 1970s, before we started working with these questions, more specifically. And that Anja, in this case, will have a sixfold increased risk of becoming a teenaged mother compared to non-ADHD peers. So, we do not seem to reach Anja and her peers, and ADHD peers. “So, what could that be due to?” we asked ourself in the next step. So, we wanted to look at what Anja actually said to us, that she felt that she got depressed by using the pill and that she quit it due to unacceptable side effects. And we know that Anja, just because she has an ADHD diagnosis, is an increased risk of developing depression just due to her ADHD. And Helena is right, looking at the science behind associations with hormonal contraceptives and depression, we don’t see that they increase the risk of depression in the general population of females, but what about Anja? What about young women with ADHD?
So, we set out, again, in the National – in a nationwide register-based study, to look on hormonal contraceptives in women with ADHD and without ADHD, and we found that Anja was actually right. She was right and Helena was wrong, and she do have three-five times increased risk of being depressed using the standard hormonal contraceptives prescribed in Swedish youth centres, on top of an already increased risk for anxiety and depression that we know about in ADHD.
So, one of the studies we did, associated to this, is also trying to advocate for the provision of long-acting reversible contraceptives, like IUDs and surgical – after surgical abortion. And we think that that might be a safe and attractive contraceptive for females that tend to not tolerate or forget to take their pills. And we see that we are already on our way in doing that, but that there are much more that we can do, and we think that we should actually advocate that on a broader level because it’s a safe and tolerable contraceptive for a female with ADHD.
And when these women, they get – when they get pregnant, they have risk pregnancies. So, in a study from 2014, we were – we showed that smoking during pregnancy and – is associated with a risk for offspring ADHD. But when we adjust for genetic factors, we can show that this association is probably better explained by familial confounding, by shared genetic factors, than the exposure of smoking during pregnancy. With that said, smoking during pregnancy is harmful for both mother and child for so many other reasons. However, we don’t think it’s the cause of childhood ADHD.
More on risk pregnancies, ADHD and preterm birth. We show in a study, a National Register study, that we – females with ADHD have a higher preterm risk, or risk for preterm birth, compared to women without ADHD. And more specifically, very preterm birth associated with early spontaneous and medically induced birth onsets, and that females with ADHD, following pregnancy, are at increased risk for depression and postpartum anxiety. Showing that we need more knowledge and experience in maternal healthcare to support these females at an early stage.
And parenting. Being a parent with ADHD could be tough. The heritability of neurodiversity is high, so mothers with ADHD have a higher risk of getting children with ADHD. And we know from studies that mothers with ADHD, they report a high parental-related stress. That they more often report using a harsher and more inconsistent parental style, although that they do want to be the best and the most supportive parent to their children, as anyone – parent would be. They are more – have to depend on increased need for welfare and social support and they are less likely to adhere to parental checkups. And they will more often feel that they are criticised by others, adding to this low self-esteem that we see in females of all ages, and that the emotional dysregulation of ADHD is one of the hardest thing to cope with as a parent, because you feel that that affects your child in a very negative way.
So, multimorbidity, polypharmacy and increased and excessive healthcare utilisation before diagnosis is the rule, rather than the exception, for young adult females with ADHD, and early detection can impact mental health in generations to come. Still, standardised methods for predictable hormonal fluctuation across female and precision medicine and to tailor gender informed interventions seems very far away today. And this is something that we, in our research group and many others, would like to change.
So, just before we star – stop, some short, short messages about what happens when Lou and Anja gets into adulthood and become adult women with ADHD. Looking at the research here, we have to highlight the stress and the challenges in the reproductive life, the parenthood, the relationships and the work life of adult women with ADHD. And adult women become ageing women with ADHD, and looking at the research, we should have 2-3% of all women over 60-years-old fulfilling the ADHD diagnosis. Very, very few of them have gotten an assessment or a proper diagnosis.
They have the same difficulties, but life offers new challenges. Maybe a partner has left or died. Maybe retirement robs you of the structure you had when you were – in your working life. And reports show that these women, they live with low self-esteem, feeling very lonely and the
7 life, the seven lifestyle factors, has taken out its toll and physical and mental ill health is common. However, the light in the tunnel here is even though they have struggled an entire life without proper diagnosis, getting diagnosed, even if it’s later in life, result in better quality of life and an improved self-esteem and quality of life. So, that is a very strong reason for also allowing older females to get their ADHD diagnosis.
So, the take homes. ADHD, females, hormones, what’s the problem? Well, the problem that we’ve been talking about today is that girls and women with ADHD, they are at risk for early sexual debut, sexual risk-tasking, sexually transmitted diseases, exploitation, victimisation, unwanted pregnancy, abortion, underage parenthood and everything that follows that. The problem, also, that women with psychiatric conditions are often excluded from crim – clinical trials. So, the knowledge of how hormonal factors affect mental health, risk-taking, medication and outcomes in females with ADHD, is hugely lacking, but it’s getting better.
We know that the interaction is there about – with the ADHD symptoms that may vary across the menstrual cycle. That oestrogen do affect mood and emotions and that dopamine is dysregulated in ADHD. And if we continue to use the male norm instead of start – thinking about gender informed assessment and cyclic treatment strategies, I think we risk missing out on a very, very huge piece of the puzzle that we need here.
So, the solution. Well, I don’t have the solution, but I have some suggestions for the solution. I think we have to find and support the girls much earlier. We can’t leave them hanging there and we can’t have a four-year diagnostic delay, because during these four transformative years, the girls, they develop a lot of comorbidities and sinking self-esteem. We can do that, I think, by improving knowledge in schools and primary care, in youth centres and in every other places where the girls keep turning up in our system. We can target the reproductive counselling, because we know that a lot of the girls with ADHD, undiagnosed ADHD, and young women, they will turn up in our youth centres. And we can employ much more of the multidisciplinary research and clinical work. We can also talk about titrating ADHD medication, since we know that oestrogen and dopamine levels modulate each other’s effects.
And cycling dosing, there is no research on that yet, but since we know that oestrogen affects ADHD symptoms and that dopamine is moderated by oestrogen and that dopamine is the central neurotransmitter that we are trying to effect when we use ADHD medication, there might be, now, theoretically enough support to think or to, at least, ask women how they are doing in different parts of their cycle and let’s try to titrate medication according to that. Might be that you have too high dose in the first 14 days, or that your dose is too low in the post-ovulatory phase of your cycle.
The implication. The early detection by focusing on female specific displays to – oh, sorry – to factor in the comorbidity, to factor in the hormones and to focus on female display, early comorbidity and predictive periods of hormonal fluctuation and cyclic treatment strategies. So, what can you do to support girls and women with ADHD, like Lou, Anja, Mia and Ella? As a parent and a partner, you can always listen very carefully, and you have to listen sometimes in between the lines of what the girls and the young females are saying. And you can also get interested in factoring in the hormones. From a school and a workplace position, we can also ask and talk, and we can engage in practical problem-solving skills to be part of bridging the gaps of knowledge. And us, in healthcare, and the society as a whole, we can be much more involved in the multi-professional research standard of care and increase the focus on biological and gender differences.
So, Lou, Anja, Mia and Ella, we were talking about the clinical phenotyping of their individual ADHD. But what I am working on with my research group is actually some kind of digital phenotyping. We’re are engaging in the pilot now, where we employ this 24:7 way of viewing ADHD to map out any – every girl’s individual ADHD phenotype or profile, and their seven deadly sins or lifestyle factors. Building prediction models where you can actually send messages to your future self in other periods of your menstrual cycle, and develop, together with a coach or with your healthcare professional, productive and individualised life hacks to handle your ADHD and your hormones.
So, I’d just like to, again, promote my book. I’m very proud of this book that I’ve written together with my patients on how to live with ADHD as a woman across the entire lifespan. And to say thank you so much for listening and for – if you want to, reach out to join and to find new collaborations around female ADHD across the lifespan. Thank you very much.