ADHD in women
Quick facts about ADHD in girls & women
- For a long time, girls and women were ignored in ADHD research and literature. Since ADHD was first studied in the late 1700’s, it has predominantly been studied in boys: white, hyperactive, school-aged boys, to be specific. While research on girls and women is growing at an exponential rate, the myth that ADHD is a condition of boyhood has gotten in the way of adequate diagnostic and treatment services for millions of girls and women with ADHD.
- That is why we have so many women getting diagnosed much later in life after a lifetime of struggles.
- According to a prominent study by the National Institute for Mental Health in 2011, about 4.2% of females have received a diagnosis of ADHD at some point in their life. However, we are still learning whether these numbers actually reflect incidence or whether rates of diagnosis for girls and women continued to be underreported.
- The co-occurring conditions that females present with, are different from those usually seen in males.
- Overall, however, women and girls are less likely to be properly diagnosed with ADHD, with boys and men being more likely than girls and women to be referred for services even when their symptom profiles are exactly the same.
- Many girls and women are initially referred for treatment due to symptoms of anxiety and depression, while symptoms of ADHD are missed. A number of complex and nuanced factors further influence the female experience of ADHD, including fluctuating estrogen levels impacting symptoms and gendered expectations of behavior that might complicate how symptoms are perceived. ADHD in females of all ages also has links to emotional dysregulation and mental health problems.
If you wish to read further about the differences between girls and boys – ADHD Awareness Month and ADHD Europe.
What all females with ADHD share are the following symptoms
- Not achieving at their ability level (Inconsistent achievements) – and women tend to change their jobs frequently.
- Perfectionistic behavior and having to work longer on projects than their non-ADHD peers.
- Being forgetful, easily distracted, and often late.
- Having sleep problems (getting to sleep, staying asleep, quality of sleep).
- Finding it difficult to concentrate during conversations, affects friendships, school, and work.
- Always seeming to be on the outside looking in.
- Comfort eating (or comfort drinking alcohol for adult females).
- Overexercising or none at all.
- Typically experience more stress more acutely than their non-ADHD peers.
Those who have a high IQ can very well reach university before they begin having difficulties.
Many may appear to have successful careers, but the internal struggles still cause them to be less resilient than their colleagues. BURNOUT is a common occurrence for these women and some may even be lucky enough to get an ADHD diagnosis when this happens. However, they are more likely to be misdiagnosed. Who would even entertain the thought that women in high-profile positions could possibly have ADHD?
Late diagnosis of women with ADHD
Unfortunately, many women have struggled for years living with ADHD, causing implications prior to their delayed diagnosis. In addition to the above-mentioned symptoms, being diagnosed late can result in increasing problems, and some women with ADHD may experience the following additional symptoms :
- Poor self-care & accidental injuries.
- Substance abuse & addictions.
- Low self-esteem, even self-harm & possible suicide.
- Unhealthy relationship dynamics – even intimate partner violence.
- Marital discord – and possibly divorce.
This is why it is so important to be aware of how ADHD presents in girls try and identify and diagnose girls at an early age.
Diagnostic challenges in girls and women
Misdiagnosis is very common for many girls & women around the world. Many women are diagnosed with another condition (but their ADHD is missed). This is a sad state of affairs and the realization of all that they have lost while their ADHD symptoms were misdiagnosed, is the most difficult emotion they have to deal with post-diagnosis. Some testimonials are:
- “….23 years after my dyslexia diagnosis. My ADHD was never picked up on during school or while at university.”
- My undiagnosed ADHD resulted in comorbid conditions such as bipolar disorder, & OCD.
- I was misdiagnosed to have a psychiatric illness, such as depression or anxiety before I was diagnosed with ADHD.
- I was diagnosed with Bipolar 2, a mood disorder, as my energy & enthusiasm was seen as ‘hypomania’ before my ADHD diagnosis.
- I dismissed my diagnosis as rubbish. It made me sad, and I could not believe that I could have ADHD!
A challenge can also be that a healthcare professional does not have up-to-date information, and is unfamiliar with hormonal involvement, puberty, menopause etc. Some assessments neglect internalizing symptoms and the way that ADHD presents in girls or women. We know that at the beginning of puberty, monthly hormonal fluctuations bring high levels of estrogen and progesterone, enhancing neurotransmitters and improving cognitive functioning following menstruation. However, when premenstrual hormone levels drop, women experience an exacerbation of ADHD symptoms along with typical premenstrual changes. Low estrogen triggers greater irritability and disruptions of mood, sleep, and concentration. These observable symptoms can easily lead to a diagnosis of PMDD, without consideration of underlying ADHD.
The ADHD Women project has more information on their website.
Access to diagnosis and treatment
The Updated European Consensus Statement on diagnosis and treatment of adult ADHD co-authored by Prof. Sandra Kooij is an interesting scientific read which can be very useful to show your healthcare professional
Most European organisations hold events with professionals or experts sharing knowledge about ADHD and offering support in their respective countries. If you do not live in Belgium and would like more information about access to diagnosis and treatment in your country, get in touch with a non-profit organisation like ourselves. On this webpage, you will find more information about European charities.
In recent years, we have contributed to the ADHD-Europe Access to Diagnosis and Treatment in Europe survey which highlights that despite positive developments, the ideal situation in which an individual with ADHD can access the same standard of care and medication wherever they are in the EU, is still very far from reality.
More research is available about ADHD in adults and the lifelong effects of ADHD. Unfortunately, there remain circumstances that are in dire need of improvement: Continued long waiting lists for children to access diagnostic services in most member countries; (contrary to the early intervention advice of the NICE ‘gold’ standard). There is continued inadequate provision of health services for adults in many countries (diagnosis and reimbursement for medication). There are also a lack of family clinics where child AND parent can be treated simultaneously (as ADHD is a heritable trait).
There are different viewpoints on ADHD as a disorder and on its medication in society. Full details of the survey are available here. To access this full report, visit here.
Further information about Symptoms and Diagnosis of ADHD.
Read the full Diagnosis & Treatment in Europe
Where do I get support?
Diagnosis should be done by a psychiatrist who is specialized in ADHD in women. Recommendations from one’s local ADHD organization or Support Group would be the ideal way to get this information. At the outset, the patient will be required to undergo a physical health check to rule out any other causes for her symptoms. The actual ADHD diagnosis includes completing questionnaires to determine if one’s symptoms indicate possible ADHD. Further questionnaires are also used to analyse mood, sleep patterns, and emotional dysregulation. The psychiatrist typically will try to get information about one’s development as a child and adolescent and if school reports are available, s/he would be interested in seeing them. Above all, s/he would ask about the most debilitating symptoms that the woman being tested has had since reaching adulthood.
Suggested Ways to Manage ADHD
Medication alone is not the best way to treat ADHD; there have been a lot of studies done about this and it has been shown that the best results are attained when medication is accompanied by Cognitive Behavioural Therapy (CBT) or another therapy suitable for individual patients as well as ADHD coaching (e.g. www.chadd.org/coaching). This is especially important when women are only diagnosed in adulthood because they are likely to have used a variety of unhealthy survival strategies by that time and need to systematically wean themselves off these; CBT is the best way to do this and adults respond very well to this form of therapy, especially when coupled with Mindfulness techniques. This is the gold standard for ADHD treatment.
Antonia Dittner, John Hodsoll, Katharine Rimes, Ailsa Russell, Trudie Chalder (2018): “Cognitive Behavioural Therapy for Adult Attention-Deficit Hyperactivity Disorder: a Proof of Concept Randomised Controlled Trial”
“Cognitive Behavioral Therapy and the Treatment of ADHD” in:Interview About CBT With Dr. J. Russell Ramsay by Keath Low, updated on 13 January 2020 (www.verywellmind.com).
Another therapy that has gained ground in the last 20-25 years in Belgium is Neurofeedback. Usually, this therapy is in the form of a video game, music, or movie. During a neurofeedback session, what your brain is actually doing is compared to what you would like it to be doing. When your brain is nearing a more comfortable state, you are rewarded with a positive response on a computer screen. Much like physical exercises develop specific muscles, the more your brain is exercised into reaching a more comfortable, more efficient position, the better it gets at it. As with learning any new skill, it simply requires time and repetition. Martijn Arns, Hartmut Heinrich & Ute Strehl (2014): Evaluation of Neurofeedback in ADHD: The Long and Winding Road (Biological Psychology, vol. 93; pgs. 108-115).
The long-term goal is that the Neurofeedback would lead to someone being able to function (possibly) without medication. Results are seen at first about six months after completing treatment and these improvements seem to continue to evolve up to two years after the treatment. At some point after this, it is usually necessary to have supplementary treatment. To find out more about how Neurofeedback treatment is done in Belgium, read: “Neurofeedback and State Regulation in ADHD” by Dr. Van Den Bergh, MD, Psychiatrist, and Psychologist. It is not a first-line treatment for ADHD in Belgium, but rather a complementary one.
Like everything else, it works better for some people than others. Van Doren, J., Arns, M., Heinrich, H., Vollebregt, M. A., Strehl, U., & K Loo, S. (2018). “Sustained Effects of Neurofeedback in ADHD: A Systematic Review and Meta-analysis” (European Child & Adolescent Psychiatry. doi:10.1007/s00787-018-1121-4).
Ryan, M., Brown, T., Vollebregt, M. A., & Arns, M. (2019). “What’s Sleep Got to Do with it? Circadian Rhythm sleep Disorder, ADHD and Neurofeedback” (Asia Pacific Journal of Neurotherapy, 1(1), 85-98).
Other conditions can also be present along with ADHD, especially when ADHD is not diagnosed and treated during childhood. This is especially the case with women (with undiagnosed ADHD) and one of the reasons they are often treated only for the coexisting condition (comorbidity).
Here are some conditions that women often have in addition to their ADHD:
- Anxiety Disorders, such as generalised anxiety or social anxiety disorder or obsessive-compulsive disorder (OCD).
- Emotional dysregulation.
- Bipolar Disorder.
- Substance use disorders, alcohol or drug abuse.
- Personality disorders.
- ADHD is highly comorbid with circadian-based disorders: Sleep disorders – insomnia, sleep apnea, circadian rhythm sleep-wake disorders.
In Belgium and Germany, the Composite Scale of Morningness (CSM) is used as a way to evaluate circadian rhythm patterns in people being tested for ADHD. Sleep disorders are one of the most commonly self-reported comorbidities of adults with ADHD, affecting 50 to 70% of the population. A team of British researchers set out to see whether this association could be further confirmed with objective sleep measures, using cognitive function tests and electroencephalography (EEG). Asherson, Philip, et.al. “The Key Role of Daytime Sleepiness in Cognitive Functioning of Adults with ADHD” (European Psychiatry (2020), in: ADHD and Comorbidity).
Measured as the theta/beta ratio, EEG slowing is a widely used indicator in ADHD research. While it occurs normally in non-ADHD adults at the conclusion of a day, during the day, it signals excessive sleepiness, whether from obstructive sleep apnea or from neurodegenerative and neurodevelopmental disorders.
- Eating disorders, such as binge eating, obesity, anorexia, and bulimia.
- Comfort eating is common in females with ADHD, especially if untreated; this is a stress reliever for them. Chronic lack of sleep is associated with obesity because when a person is tired, they are hungrier than when they have slept well (Kooij & Bijlenga, 2014).
In addition to these, the following comorbidities are prevalent due to how hormones affect women:
- Premenstrual Syndrome (PMS) / Premenstrual dysphoric disorder (PMDD).
- Polycystic Ovarian Syndrome (PCOS).
The ADHD Women project will be making more information available on their website about puberty, hormones, menopause, and beyond.
As estrogen levels drop throughout menopause, ADHD symptoms intensify. In combination with age-related cognitive changes, confusion, memory, concentration, and sleep become even more impaired. Since women now spend about a third of their lives post-menopause, it is critical that researchers explore the impact of hormonal cycles on ADHD symptoms.
Research on health in women with ADHD
We already know that there is currently a lack of research focusing on adult women with ADHD – especially from the perspective of these women themselves. The aims of this survey are to:
- Understand the overall experience of adult women with ADHD.
- Explore the links between ADHD and other health conditions.
- Identify barriers to diagnosis and sources of support.
- Recognize what needs to be researched further and which interventions are needed.
Why did we start the ADHD Women Project?
In collaboration with ADHS Deutschland e.V, our main goal was to change women’s lives, to provide information, support and a network to be #bettertogether #strongertogether!
Our campaign across Belgium and Germany is allowing women to discover more about symptoms and more…
Written by Chantel Fouche, adapted from the experiences of girls/women living with un/diagnosed ADHD and the website www.adhd-women which was authored by Joanne Norris.