In true ADHD style, I missed the deadline for International Women’s Day 2025 #AccelerateAction. Better late than never…. Last year I wrote to raise awareness of ADHD in women, and the importance of a diagnosis for them, you can read this here.
This year, I wanted to raise awareness of the health inequalities women with ADHD encounter, and by doing so, add to the existing call to action on healthcare commissioners, providers and those in a position of influence to recognise and validate the impact of living with ADHD has on girls and women, and how left untreated, undiagnosed, misdiagnosed, misunderstood and mismanaged, can lead to heart breaking consequences. I want to see reform to outdated assessment criteria, stereotypical beliefs, and the lack of awareness, exposure, education, and priority given to it.
Evidence suggests that having a diagnosis of ADHD means you are twice as likely than the general population to die prematurely. The risk of early mortality is more than two-fold in childhood with ADHD and more than a four-fold increase by the age of 45 (my current age). For each four-year period that an adult with ADHD goes untreated, their risk of mortality becomes twice that of a typical adult. At the age of 27 years, people who were diagnosed with ADHD in childhood, could be expected to have a 12.7 year reduction in their estimated life expectancy and 11.1 year reduction if symptoms of ADHD persistence into their adulthood (which they often do).
It’s a sad and stark truth that having a diagnosis ADHD is suggestive of dying prematurely relative to the general population. It should shock you to read that people living with a diagnosis of ADHD, have a greater reduction in estimated life expectancy than those which are associated with a reduction due to obesity, smoking and high blood pressure alone. Yet, I still don’t see well publicised, researched, clear and measurable, national, public health prevention and promotion strategies and programmes of work, aimed at reducing these risks and supporting those it impacts. ADHD remains the poor relation and people living with ADHD continue to be chronically failed by public sector services and have poor long term health outcomes and face significant health inequalities.
The latest data suggests an ADHD prevalence rate of 2.6 million people in the UK, of which 1.9 million are adults and 708,000 children, however an estimated 80% of those don’t have a diagnosis. We also know that diagnosis does not equate to treatment opportunities or availability. In England currently 277,640 people receive a prescription for ADHD medication, this extrapolates to 12.6% of people with ADHD receiving medication. We only need to look at the recent ADHD national medication shortages, whereby thousands of people had to go without their medication for months, to see the inequity, and lack of importance and priority it holds. The impact this had on so many lives cannot be underestimated, medication is not a ‘nice to have’, it is a necessity for many.
The picture is bleaker if you are a woman:
- Women with ADHD have a greater reduction in estimated life expectancy than men, relative to the general population, 8.64 years for women and 6.78 for men. There is an estimated 750,000 women and 420,000 girls currently living with ADHD in the UK, that equates to 6,900,000 years lost early of a woman’s life
- Women are less likely to get a diagnosis of ADHD, which adds greater risk and complexity (the incidence of ADHD in adults in the UK is approximately 4% with a male to female ratio of 3:1)
- There is an estimated 75% of women living with ADHD undiagnosed
- Women are more likely to get misdiagnosed, often with comorbidities of ADHD, spending more of their reduced life not understanding themselves and not accessing the right treatment or support.
Adults with ADHD are five times more likely to try to take their lives than those without ADHD. One in four women with ADHD have tried to take their own life, versus one in 10 for men
Although data shows that ADHD assessment requests and diagnosis is on the increase, women and girls are still being left behind (one NHS trust had an increase of 1800% for men compared to only 1000% for women between 2000 – 2018)
ADHD does not favour men! It is not a gendered condition. Women are just as likely as men to have traits and symptoms. There is emerging evidence that there is higher threshold for ADHD diagnosis in women and girls. Even when presenting with a high number of traits and symptoms, they are less likely to be diagnosed or prescribed appropriate medication, unless they have significant hyperactive/impulsive symptoms which are more likely to be internalised rather than the traditional externalised behaviours often seen in males. Therefore, ADHD on its own, might be insufficient for women and girls to be considered for an assessment referral, diagnosis, or treatment, resulting in significant gender health inequalities and life experiences and expectancy for women.
It’s clear that not enough is being done to raise awareness of ADHD symptoms and traits in women to ensure timely assessment, diagnosis, and support. Women, mothers, daughters, sisters, and friends are living shorter lives due to misconception, miseducation, and misinformation. There is a huge health and gender inequity that demands urgent attention and radical change.
Miss – Understood
There’s a commonly used narrative that the average woman with ADHD will have received approximately 20,000 more negative comments as a child than her neurotypical peers. This article written in 2010, suggests that in school alone, a child with ADHD could receive 20,000 corrective or negative comments by the time they are just 10 years old. This is based upon them receiving nonpositive comments from teachers 3 times an hour, multiplied by 6 hours a day and 180 school days a year. This doesn’t even consider comments from peers or family. However, by the time they have received a diagnosis and treatment to help reduce behaviours which elicit the comments, they have already learnt that who they are is not ok. Furthermore, that this leads to hidden low self-esteem for these children, who suffer the pain of just being themselves, they expect to fail, rather than succeed.
I’m not sure how accurate this figure is, but I do know that a life with ADHD is a life deep rooted in inadequacy. It’s a story of never feeling good enough, confusion over why you are different, being labelled as naughty, too much, overreactive, sensitive, incapable, ashamed, unworthy, inarticulate, and stupid. We didn’t, and still don’t, intend to show up to the world this way, we’ve led a life of confusion as to why we do.
Transitioning to womanhood, we carry all of this with us whilst being acutely aware of gender typical societal norms and expectations. We know our failures and shortfalls all too well and face the judgement of society for transgression of these. This, coupled with our own internal belief system, forms our identity as women. We live with a constant deep-rooted sense of self-doubt and spend too much of our shorter lives apologising for who we are, how we are, and what we want. It’s innate in our DNA now, we’ve been told too many times that we are wrong in one way or another, that we now automatically apologise for what we do, we carry the story of not being good enough.
If, and when, we do finally receive a diagnosis, the feeling of relief and sense making can soon return to that of not knowing who we are. Having spent our developing lives from girlhood into womanhood feeling misunderstood, we have learnt to ‘mask’ our true selves to conform, be normal and to please everybody else. We have been so scared for the world to see ‘us’ that we’ve lost sight of who we are.
Accustomed to living tens of years of our lives feeling misunderstood has led to the inability to trust ourselves and to be able to fully evaluate our worth as an adult. Despite evidence that we ‘can’ and ‘are’ good enough, our internal narrative now tells us as default that:
- We’re not good enough
- We are not deserving
- Our lives are messy complicated and chaotic, we are often scared to invite anyone into that through fear of them validating this and rejecting us (more on rejection sensitive dysphoria here)
- We are incapable, unable to function and do the basics, keep up with those gendered societal norms and expectations. We are unreliable as friends and lovers, we forget, we misplace.
Our diagnosis explains why we are like we are, that none of it is our fault, it’s the way our brain functions, however, our thoughts, feelings, and behaviours are ingrained deep within us now as a way of ‘being’ which feels too difficult to break free from. The impact of late or worse still, no diagnosis is beyond damaging for girls and women.
Miss – Diagnosed
In the UK we diagnose three times as many boys than we do girls, resulting in serious implications and consequences for girls and women. Research shows that girls are often diagnosed on average 9 years later than boys, the impact this will have on her education, important relationships and friendships, sense of self, and overall mental health and wellbeing is significant and life changing. Even as adults, when diagnosis rates become more comparable to men, women are likely to have experienced more years being misdiagnosed, and incorrectly supported and treated, potentially leading to an exacerbation of poor self-awareness and feelings of inadequacy as well as poorer educational, social, and economic outcomes.
Misdiagnosis in women and girls has a huge impact on their lives.
If women and girls are as likely to be living with ADHD, why is it that they are significantly less likely to be diagnosed correctly or even at all? A recent article in the Lancet suggests several key factors as to why girls are less likely to be diagnosed, and moreover, why women are more likely than men to be misdiagnosed in adulthood.
Outdated and biased diagnostic criteria currently used in the DSM5 and ICD11 diagnostic criteria has largely stayed the same since its initial publication in 1994. The field trials for establishing the diagnostic criteria were based on a sample which included only 21% females; therefore, the criteria descriptors are more likely of male presentation than females. Yet despite this bias, it is still used to assess girls and women for ADHD even though evidence suggests that they present much differently to boys. I’ve written previously about differences for girls and women here.
Overshadowing and associated comorbidities means that girls and women are facing more challenges to diagnosis and treatment than men and boys. Women and girls are more likely to be initially misdiagnosed with a mood disorder such as depression or anxiety. Several studies in adults with ADHD and co-occurring mental health problems demonstrated:
- In those with recurrent depression, a notable proportion of females who met the diagnostic criteria for ADHD had never been diagnosed with it despite indications that their depression was more likely to show treatment resistance.
- Females with diagnosed ADHD and co-occurring anxiety or depression were more likely than males to be diagnosed with this prior to their ADHD diagnosis.
- Females taking antidepressant medication were more likely to have received it before ADHD diagnosis than males and were less likely to continue to receive it after ADHD diagnosis compared with males, suggestive of initially being misdiagnosed.
Sociocultural factors and gender norms could also result in delayed diagnosis of females. As a society we hold gendered expectations of children’s behaviours, this coupled with stereotypical views of ADHD being more common in boys, may be suggestive that parents and teachers perceive the same behaviours and challenges in children differently dependent upon their gender.
Miss – Conceived
Women and girls are evidently presenting to services. However, when they do, a lack of current and up to date education, awareness, systems, and pathways to support more timely diagnosis and treatment is failing them. It’s important to note that the majority of women and girls’ experiences go unheard, unrecognised and disadvantaged for many years prior to this stage. Wait times for assessment (should you be fortunate enough to be referred) in the UK are lengthy, and averages:
Children – 5 weeks to 5 years with some waiting 347 weeks (6.5 years)
Adults – 12 weeks to 550 weeks (over 10 years)
A number of NHS organisations have implemented ‘screening tools’ in a bid to eliminate and reduce wait times, despite the screening process having already happened in primary care. Again, women and girls are more likely to be screened out of assessment processes than boys or men, even though NICE guidelines specifically note women and girls are under diagnosed.
Where screening is being used in adult assessment referrals, an average of 32% will be screened out with women being 16% more likely to be screened out than men. In children, there is 29% average screened out, with girls being 11% more likely to be screened out than boys. Once they have been ‘removed’ from the wait list, they do not have a right to a second opinion in the NHS, which essentially prevents them accessing an NHS assessment. There is no wonder that more people are being left with no option than to privately fund assessments, leading to a two-tiered inequitable system based on ability to pay, and further widening both the health and gender inequality gap. What happened to the NHS constitution and second guiding principle ‘Access to NHS services is based on clinical need, not an individual’s ability to pay’.
In one organisation alone, 1060 people were removed from the waiting list through screening (97% of their referrals and, 91% the year before) with more women than men being removed (640 women and 420 men). A further organisation using screening to reduce wait times and referral lists, screened out on average 85% of children (91% of girls and 8% of boys).
Although NHS England established a task force last year to understand and make changes to current experiences of ADHD services, the majority of NHS commissioning services didn’t know how long ADHD patients are waiting. One article I read suggested that there is currently an estimated 19,000 adults and 7,200 children waiting, yet only 21% of ICBs knew their waiting numbers. The article went further to suggest that if this data was extrapolated for the no answers, it could total 131,000 (approx. 5% of the estimated 2.6 million people with ADHD) people waiting, of which 90,000 are adults and 42,000 children.
You can access your local ADHD waitlist information here, I have looked at mine today, I was shocked but not surprised to see that there is no clear commissioned contract for specialist adult ADHD services. There are currently 5012 adults waiting for an assessment, with an estimated wait time of 237.4 weeks. In the year 22/23, 33 adult assessments were done. They are also clear that NICE guidelines cannot be fully achieved currently due to uncommission pathways and insufficient capacity to cope with demand. In relation to the information held by the ICB, they did not hold information relating to adult or child wait times and numbers.
As a reminder ‘up to 6,900,000 years of women’s lives are lost prematurely relating to her ADHD’.
Living with ADHD has a significant impact on any person’s quality of life and outcomes. This is more profound for women and girls. These health inequalities for women have a significant impact on how they live their lives and as a result are likely to be experiencing:
- Anxiety/depression
- Taking medications, they shouldn’t be
- Low self esteem
- Lack of understanding of themselves
- Feeling misunderstood and a failure
- More susceptible to bullying (especially girls)
- Substance misuse to manage symptoms and cope
- Self-harm
- Preventable admissions to psychiatric inpatient units
- Pressure to have sex
- Sexual exploitation
- Unplanned teenage pregnancies and STIs
- Intimate partner violence
- Fail to thrive in school, and work
- Are 18 times more likely to be convicted of a crime than the general population
I hope by writing this that it raises awareness, concerns, and curiosities and that more people have conversations that lead to action and change. I hope that the work being undertook within NHS England is enough to change some of these statistics and that it is meaningful and impactful. I am however sceptical, but yet remain with hope.
Thank you for reading.
Ramblings… 
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