The Missing Piece: The Struggle For Diagnosis In Women With ADHD
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In childhood, a diagnosis of attention-deficit hyperactivity disorder, also known as ADHD, is the first and most crucial step toward managing its symptoms effectively and accessing proper support. In more simple terms, the diagnosis has the power to change a life.
In all age groups, boys are more likely to be diagnosed with ADHD than girls. This inequality isn’t because it is less common in girls but because the current diagnosis criteria aren’t set up to deal with sex-based differences. The Diagnostic and Statistical Manual of Mental Disorders (DSM-V) is how health care providers formally diagnose patients and has been recently updated. However, experts agree that the evaluation is still biased towards typical male symptoms and presentations, mainly due to male-focused research.
ADHD is typically noticed during childhood, particularly in primary school and is a neurodevelopmental disorder that can come in three types: inattentive, hyperactive/impulsive, or a combination of both. Those with the inattentive type may forget things and find organisation difficult. Hyperactivity and impulsivity types will struggle to sit still and often interrupt conversations, and aspects of both are present in those with the combined type. However, each of these types can present very different between boys and girls, and it is often harder to diagnose in girls.
Understanding Girls With ADHD is a book written by Ellen Littman, a clinical psychologist and researcher who has studied adults and teenagers with ADHD for years. She writes that undiagnosed ADHD in women can lead to higher rates of anxiety and depression. Littman claims that this is likely due to girls being seen as lazy and forgetful by teachers, parents and peers despite overcompensation to keep up appearances and fit in with societal norms.
Transitioning into adulthood while living with undiagnosed ADHD for so many years can become a catalyst for other mental health problems. Since ADHD is not a disorder you grow out of, many women who miss out on an early diagnosis experience years of internalised guilt and shame.
This was the experience of 22-year-old Abigail, who had to leave university due to mental health struggles alongside undiagnosed ADHD.
“It got bad going into university. Being left to my own devices without the routine of living with my parents, I just couldn’t look after myself properly, and my eating disorder and depression completely spiralled out of control.
“Big assignments were crammed in at the last minute after weeks of procrastination. It seemed effortless to my friends, but at times it was paralysing for me.
“I couldn’t force myself to concentrate or get simple tasks done, let alone big ones like university work. I completely neglected myself. I didn’t eat, shower, brush my teeth or clean up. I barely got out of bed.”
As her eating disorder and depression deepened, she started to find life more difficult.
“I was severely underweight and could barely string a sentence together.
“All I thought about was how much I hated myself for not being able to get anything done, especially since it seemed to come so naturally for everyone else.”
After dropping out of University, Abigail managed to gain her diagnosis, providing access to support that allowed her to re-apply and finish her degree. This, however, isn’t the reality for many women. Over time the repercussions of living with these symptoms can lead to self-harm, suicide attempts and untimely deaths.
The statistics for men and women currently living with an ADHD diagnosis are 10 to 1. However, looking at statistics for who meets the ADHD criteria, the ratio is more evenly split. This highlights that girls and women are much less likely than men to receive a diagnosis despite facing the same struggles.
Most research tells us that the sexes experience the same number of types and severity of symptoms on most measures. It also suggests that the benefits of medication, other comorbid disorders, and academic struggles are often the same in both sexes.
Lived experience of women with ADHD shows that whilst both sexes may experience the same symptoms, life can be very different. Emerging research reveals that women are at much higher risk of adverse outcomes from the disorder than are males. This is mainly due to the added weight of fluctuating monthly hormones, gender role restrictions, societal expectations and the likelihood of living undiagnosed.
“It is obvious from statistics that there are a lot more females affected by ADHD than those with a diagnosis.” Rebecca Anderson, a campus student health and learning services support worker, explains. “Yet, for some reasons that we still are unsure of, they don’t get properly diagnosed as often as their male counterparts.”
“Often girls get missed since they don’t present their ADHD in the traditional ways. Unfortunately, it is often the case that medical professionals and teachers, who are already poorly trained in detecting ADHD, will miss these subtle presentations in girls.
“We know that often, girls will try very hard to fit in and appear capable at school.
“I often hear parents say, ‘my daughter doesn’t have ADHD. She does so well in school’. But the reality is she could be spending triple the amount of time doing homework as her peers to make sure it is done and perfect.”
These signs can go unnoticed for years, especially when girls are able to do well in school. Many undiagnosed girls’ mask’ their symptoms; modify their behaviour to fit neurotypical standards. Masking forgetfulness, for example, could be obsessively checking your belongings to make sure you have everything before leaving for work. Masking is much more common in girls with ADHD than boys. This is one of the main reasons they have gone unnoticed for so long. Behavioural masking can often complicate the process of diagnosis.
“We are really doing young girls and women an injustice by not properly assessing, diagnosing and supporting them.” Says Rebecca.
The difference in diagnosis rates and presentation highlights a gap in the continuous research and understanding of women and ADHD. Women’s subtle presentations are often misinterpreted and diagnosed as anxiety or a mood disorder. However, the chronic and often paralysing feelings of inadequacy and shame are difficult to acknowledge and accept. This can make it more challenging for clinicians to recognise and correctly diagnose. Women often strive to hide their differences and are hesitant to ask for help; they are also more likely to second guess themselves and retreat from getting help.
55-year-old Lynn fits the description of ADHD in women perfectly. She wasn’t officially diagnosed with the disorder until the age of 54, despite showing apparent signs during her school life.
“I couldn’t concentrate … I got put outside the classroom a lot because I couldn’t sit still or stop talking. I didn’t do exams; I started just leaving.”
After relating to videos about ADHD on TikTok, she researched further into the disorder. She took an online test verified by health care professionals and rated as highly likely to have ADHD.
“I didn’t know what ADHD was. I thought it was naughty boys. I had no idea it could affect girls. Even at my age, which made me feel a little bit ignorant.
“I have fought for both of my children to be assessed and it’s like pulling teeth because they are both girls and did well at school.”
Going years without a diagnosis meant that she could not access any help for her disorder and consequently struggled with its symptoms in many areas of her life. But after her recent diagnosis of ADHD – Inattentive Type, Lynn has been prescribed ADHD medication.
“Medication has helped me now. I wish I’d had it then. There was a reason I had been the way I had my whole life, but anger and sadness really had affected me my whole life.”
“I probably would have been able to have a career that I stuck with. Instead, I just jumped from job to job. I couldn’t work for other people; I ended up self-employed.”
“It’s also really affected my relationships with my whole family. I just thought nobody understood me.”
Like many women, Lynn, unfortunately, was unable to get her diagnosis through the NHS and had to pay to be assessed and diagnosed privately.
“Most women by the time they are diagnosed with ADHD have been on at least ten forms of anti-depressants because it is an easy cop-out for the GP just to pass you along.”
“When I spoke to my GP, she laughed because of my age … and then she told me to go private.”
Last year hundreds of thousands more women tested themselves online for ADHD than the previous year, and new figures show that women sought out more online tests than men. Data from The Independent shows that in 2019 only 7,700 women took online tests (verified by healthcare professionals) to see if they fit the criteria for a diagnosis. This figure rose dramatically to 254,400 last year. Increasing online awareness could help shift public attitudes and guide more women to seek a diagnosis.
During the pandemic, the routine and consistency many people with ADHD rely on were interrupted. Family members were suddenly around all the time and became more aware of problems many women tried to hide. In Dr Littman’s book Understanding Girls With ADHD, she speaks about many women reporting that they feel shamed by their partners for these symptoms.
Life under the pandemic lockdown was a struggle for everyone – including women with ADHD. Often overlooked and misunderstood by society, many women with ADHD found that the pandemic made their symptoms unmanageable and inescapable. It also offered many moment to pause and seek answers to understand better why they weren’t coping.
With the increase in female diagnoses, further research is beginning to be funded around the role and impact of hormones and fluctuating oestrogen levels on women with ADHD. While the benefits of this research will take time to change treatment, it does at least indicate that things might be changing for the better. In the meantime, experts urge women to seek a healthcare provider that understands sex-based differences in ADHD and is aware of new and ongoing research.