The Lost Girls: Unmasking ADHD in Adult Women

Attention deficit hyperactivity disorder (ADHD) has been a largely misunderstood disorder, surrounded by stereotypes and a lack of comprehensive research for decades. From the 1960s up until the last decade, clinical understanding of ADHD was based on its presentation in boys, who had more obvious signs of the disorder than their female counterparts. Referred to as “the lost girls,” many young women with ADHD went undiagnosed or misdiagnosed for years, leading to delayed interventions, increased mental health struggles, and a generation of women left to navigate the challenges of ADHD without adequate support.¹

Greater awareness and more inclusive research are essential for women who have long been overlooked. Image Credit: © Syuzann q - stock.adobe.com

Over the last 2 decades, adult ADHD diagnoses rose from 6.1% to 10.2%, accounting for over 8.7 million adults in the United States, with significant increases observed since 2020. Individuals have taken to social media, such as TikTok, to discuss their adult ADHD diagnoses or potential symptoms of ADHD, particularly adult women. This has raised questions around whether this phenomenon is a result of under, or missed, diagnoses of young girls or the potential existence of adult-onset ADHD.²

ADHD is a chronic neurodevelopmental disorder that starts in childhood with symptoms of varying severity that impair daily functioning, including the ability to properly engage in work or school settings and manage various aspects of one’s life. It is largely believed that ADHD is “deficit” of attention; however, individuals with ADHD have difficulty regulating their attention rather than not enough of it. The underlying mechanism causing ADHD isn’t clear, but thought to be a result of genetic, neurobiologic, and environmental. ADHD is highly hereditable and can be diagnosed in multiple members of the same family, and parents can pass it on to their children.^3,4

Individuals with ADHD can be separated into 2 groups: hyperactive, which is characterized by observable, external symptoms; and inattentive, which can be more difficult to identify. To meet criteria for a diagnosis, these symptom “buckets” must be present before the age of 12, according to the Diagnostic and Statistical Manual for Psychiatric Conditions. ADHD is associated with focus, attention, organization, time management, and planning difficulties, in addition to hyperactivity or inattentiveness. These symptoms can vary in severity depending on the individual and can change over time in response to environmental demands.⁵

“It's a chronic condition. The presentations can change over time, and the impairment can change over time,” said Angie Claussen, PhD, research psychologist for the CDC with a background in developmental psychology, in a Pharmacy Times interview. “Some of that has to do with what situations you are in; for example, whether your ability to manage [stimuli] in an environment is accepting or maybe stressful.”

Presentations of ADHD can vary among boys and girls. Historically, studies of ADHD have been focused on boys whose symptoms were more obvious, leading it to its consideration as a male condition with diagnosis being 4 times more likely than in females. In childhood, boys with ADHD are typically diagnosed as hyperactive with symptoms including impulsivity, acting out, and increased movement, such as jumping and climbing.⁵

ADHD in girls can be more difficult to diagnose, which has been largely impacted by lack of research and the increased likelihood of presenting with inattentive symptoms. Young girls tend to be diagnosed with inattentive ADHD and experience functional difficulties that are less obvious from a behavioral perspective, including fidgeting, internal restlessness, or being very talkative. Because symptoms of inattentive ADHD are harder to identify, many women are missed as children and are not diagnosed until they reach adulthood. This is a significant driver behind the rise in diagnoses.⁶

“Because in society, girls are acculturated to be ladylike and to sit still, they may exhaust themselves trying to mask symptoms of ADHD that would otherwise be caught by someone who is a trained clinician,” explained Judith Joseph, MD, psychiatrist, researcher content creator, and author of the book High Functioning, in an interview with Pharmacy Times. “There are inattentive symptoms they likely had their entire lives, and they didn't get the support that they needed.”⁶

Young girls are adept at “masking,” which refers to hiding symptoms of neurodivergence to meet the social expectations of a given environment. This can look like controlling impulses, rehearsing responses, and copying the behaviors of those who don’t have ADHD to “fit in.” Girls with ADHD may be well behaved, but in reality, are exhausting themselves to mask all of their symptoms. Years of masking typically leads to extreme burnout; by the time this happens, many are well into adulthood and find themselves struggling with the evolving demands of their environment.^6,7

ADHD in women is associated with various comorbidities not limited to anxiety, depression, bipolar disorder, premenstrual dysphoric disorder (PMDD), and autism. The symptoms of ADHD, including inattention, cognitive fatigue, or poor organization, greatly impair functioning and quality of life, contributing to feelings of anxiety and depression. Additionally, late diagnoses can have a significant negative impact on an individual’s sense of self, leading them to experience feelings of grief for their “past” selves.^8,9

“If you have ADHD and you don't get the right treatment and support, you may also develop anxiety and depression. The inability to get your brain to do the things that you want to do, to function in your daily life, to reach the goals you want to reach; if you're not diagnosed and supported, your self-awareness to think that maybe there's something wrong with you, those kinds of things definitely increase anxiety and depression,” shared Claussen.

Women with anxiety also experience hormonal fluctuations that can exacerbate their ADHD symptoms. For example, PMDD is very prevalent in women with ADHD and is associated with higher levels of inattention across the menstrual cycle. According to a study published in Hormones and Behavior, ADHD symptom risk increases during times of rapid estrogen decline.¹¹

The primary treatment for ADHD is stimulant medications such as amphetamine (Adderall; Teva), methylphenidate ER (Concerta; Janssen Pharmaceuticals, Inc), and lisdexamfetamine (Vyvanse; Takeda Pharmaceutical). However, not all patients can tolerate stimulants and have the option of non-stimulant medications. Therapy and skills coaching are also an essential part of ADHD treatment, helping individual’s adopt better habits that help improve daily functioning. This can include organization skills therapy with an executive skills functioning coach to develop effective coping mechanisms and behavioral changes.⁶

“Other types of therapies and support and coaching will help with the impairment and with functioning, and with setting up your daily life so that you learn not to over-extend yourself, and you learn to decrease the difficulties you might have, because ADHD causes a lot of cognitive demand and mental load,” said Claussen. “So, if you set up your life in a way that decreases the mental load, then you may be able to function better."

Greater awareness and more inclusive research are essential for the diagnosis and support of those impacted by this condition, particularly for women who have long been overlooked. With increased knowledge about ADHD’s diverse presentations, the hope is that more individuals will find support earlier, receiving the tools and treatment they need to manage ADHD effectively throughout their lives. As the stigma surrounding ADHD decreases and awareness rises, there is an opportunity to reshape how ADHD is understood, reducing the gaps in care that have left many feeling lost and misunderstood for decades.

REFERENCES

1. Adhd: the history of a diagnosis. JSTOR Daily. July 20, 2021. Accessed October 29, 2024. https://daily.jstor.org/adhd-the-history-of-a-diagnosis/

2. Why is adult adhd on the rise. University of Health Utah. June 10, 2024. Accessed October 29, 2024. https://healthcare.utah.edu/healthfeed/2024/06/why-adult-adhd-rise#:~:text=The%20rate%20has%20increased%20over,not%20just%20the%20easy%20one

3. The lost girls: ‘chaotic and curious, women with adhd all have missed red flags that haunt us.’ The Guardian. November 1, 2020. Accessed October 29, 2024. https://www.theguardian.com/society/2020/nov/02/the-lost-girls-chaotic-and-curious-women-with-adhd-all-have-missed-red-flags-that-haunt-us

4. Abdelnour E, Jansen MO, Gold JA. Adhd diagnostic trends: increased recognition or overdiagnosis? Mo Med. October 2022. https://pmc.ncbi.nlm.nih.gov/articles/PMC9616454/#:~:text=The%20past%20couple%20of%20decades,the%20causes%20for%20this%20trend.

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6. Insights into adhd diagnoses in adult women. Pharmacy Times. October 29, 2024. Accessed October 29, 2024. https://www.pharmacytimes.com/view/insights-into-adhd-diagnoses-in-adult-women

7. Adhd masking: does hiding your symptoms help or harm. Attention Deficit Disorder Association. August 1, 2024. Accessed October 29, 2024. https://add.org/adhd-masking/#:~:text=Masking%20is%20when%20a%20person,who%20don't%20have%20ADHD

8. Gnanavel S, Sharma P, Kaushal P, et al. Attention deficit hyperactivity disorder and comorbidity: a review of literature. World J Clin Cases. September 6, 2019. https://pmc.ncbi.nlm.nih.gov/articles/PMC6745333/

9. Lin PC, Long CY, Ko CH, et al. Comorbid attention deficit hyperactivity disorder in women with premenstrual dysphoric disorder. J Womens Health (Larchmt). September 4, 2024. doi:10.1089/jwh.2023.0907

10. Agnew-Blais J. Hidden in plain sight: delayed adhd diagnosis among girls and women – a commentary on skoglund et al. (2023). J Child Psychol Psychiatry. May 26, 2024. doi:10.1111/jcpp.14023

11. Eng A, Nirjar U, Elkins A, et al. Attention-deficit/hyperactivity disorder and the menstrual cycle: Theory and evidence. Hormones and Behavior. February 2024. doi:10.1016/j.yhbeh.2023.105466