Abstract
Objective: The aim of this review was to explore the impact of living with undiagnosed ADHD and adult diagnosis on women.
Method: A systematic literature search was completed using three databases. Eight articles were considered relevant based on strict inclusion criteria. Thematic analysis was used to analyze the results of the articles.
Results: Four key themes emerged: Impacts on social-emotional wellbeing, Difficult relationships, Lack of control, and Self-acceptance after diagnosis.
Conclusion: This knowledge can be used to advance the understanding of ADHD in adult women and the implications for late diagnosis in women.
Background
Attention-deficit/hyperactivity disorder (ADHD) was once thought to be a male only disorder, leaving women and girls to suffer in silence (Nussbaum, 2012). In childhood, the ratio of boys to girls with ADHD is about 3:1 whereas in adulthood it is closer to 1:1, suggesting that women and girls are underdiagnosed in childhood (Da Silva et al., 2020). ADHD is one of the most common psychiatric disor- ders in childhood and can result in cognitive difficulties and functional impairments (American Psychiatric Association [APA], 2013). Without a diagnosis, women with ADHD often report spending their lives feeling “different,” “stu- pid,” or “lazy” and blaming themselves for their under- achievement (Lynn, 2019). Consequently, receiving a diagnosis of ADHD can be instrumental for a woman’s self- esteem and identity (Waite, 2010). Many women experi- ence diagnosis as a lightbulb moment, giving an external explanation for their struggles and allowing them to accept themselves more fully (Stenner et al., 2019). ADHD is a manageable condition; early detection and treatment can dramatically change the outcomes for chil- dren with ADHD as they continue into adulthood (Quinn, 2004). Early intervention can reduce academic and profes- sional underachievement, relationship difficulties, and psy- chiatric comorbidities (Sassi, 2010). Research has consistently shown that females are underdiagnosed in childhood (Mowlem et al., 2018; Quinn, 2004; Waite, 2010); however, there is little research looking at the impact of this underdiagnosis. The current review examines adult ADHD diagnosis in women and the impacts of living undi- agnosed until adulthood.
Attention-Deficit/Hyperactivity
Disorder ADHD is a developmental disorder characterized by devel- opmentally inappropriate and impairing symptoms of inat- tention, hyperactivity, and impulsivity (APA, 2013). There are three main presentations of ADHD, dividing symptoms into classifications of inattention, hyperactive-impulsive, or a combination of the two (APA, 2013). Presentations will manifest differently for each individual and will look differ- ent from person to person. ADHD is a disorder prevalent in 5% to 10% of school aged children (APA, 2013). It persists into adulthood and affects both men and women (Da Silva et al., 2020), impacting 2% to 6% of the global population (Song et al., 2021).
Gender & ADHD
Societal norms and values play an important role in how peo- ple with ADHD perceive themselves and how they are per- ceived by others, with society’s prevailing norms influencing what is considered appropriate behavior (Holthe, 2013). These norms differ based on gender (i.e., the social meaning attached to biological sex); women and girls are encouraged to display “feminine” behaviors and traits such as empathy, good relationships with others, organization, and obedience (Holthe, 2013). When girls display behaviors consistent with ADHD symptoms (e.g., impulsivity, hyperactivity, and disor- ganization), they are at a higher risk for social judgment for violations of feminine norms (Holthe, 2013). To avoid social sanctions, many girls with ADHD exert considerable effort to mask symptoms of ADHD (Waite, 2010). ADHD symptoms present differently in girls and boys (Mowlem et al., 2018; Nussbaum, 2012; Quinn, 2004).
Girls are more often diagnosed with ADHD-Inattentive (ADHD-I), exhibiting symptoms such as distraction, disor- ganization, and forgetfulness (Nussbaum, 2012). Boys more frequently present with ADHD-Hyperactivity/ Impulsivity (ADHD-HI), exhibiting greater levels of hyper- activity, impulsivity, and aggression (Waite, 2010). These symptoms are often more disruptive in the classroom set- ting, leading to higher rates of referral for assessment in boys than girls (Waite, 2010). Mowlem et al. (2018) found that a clinical diagnosis of ADHD was more common in boys than girls; of the children in their study, 72% of those who had a clinical diagnosis of ADHD were boys. An addi- tional 12.9% met the symptom criteria for ADHD but did not have a formal diagnosis. Of these additional undiag- nosed participants, 64% were boys and 36% were girls, sug- gesting gender differences in rates of diagnosis as well as diagnostic criteria. Externalizing behaviors are a stronger predictor of diagnosis in girls than boys. Girls who display significant externalizing behaviors are more likely to receive a diagnosis than those who display internalizing symptoms, suggesting that girls may be more likely to be missed in the diagnostic process unless they have signifi- cant externalizing behaviors (Mowlem et al., 2018). Findings suggest that the current diagnostic criteria and/or clinical practice is biased toward the male presentation of ADHD (Mowlem et al., 2018). Not surprisingly, males are diagnosed with ADHD at higher rates than females (Mowlem et al., 2018).
One potential reason for this differential rate of diagnosis is that physicians may lack knowledge of gender differences in ADHD, leading to overlooked or missed diagnoses for women and girls (Quinn, 2008). Many women seeking treatment for mood and emotional problems may have unrecognized ADHD (Quinn, 2008). Higher rates of comorbidities such as depression and eating disorders in females with ADHD may make diagnosis more difficult. As well, physicians may have more difficulty separating ADHD from its comorbidities, potentially clouding ADHD symptoms and leading to delayed diagnosis in females (Quinn, 2008). Additionally, the reason for referral for ADHD services differs among males and females. Males are more often referred due to behavioral symptomology (e.g., ADHD), whereas females are more often referred due to emotional issues, such as anxiety or depression (Klefsjö et al., 2021). Klefsjö et al. (2021) found that girls had more visits to a psychiatric care facility prior to ADHD diagnosis, were prescribed non-ADHD medications (e.g., anti-depressants) before and after diagnosis at a higher rate, and were older than boys at time of referral and at age of diagnosis. They suggest that this difference may be due to the higher bur- den of emotional problems required for girls to be referred for treatment. Girls are often less noticed by teachers and parents until symptoms are causing significantly more impairment than required for recognition in boys (Klefsjö et al., 2021). Mowlem et al. (2018) found that females referred for and diagnosed with ADHD exhibited symptoms that were a sig- nificant deviation from their typical behaviors, suggesting that females may have a slightly higher threshold for symp- tom severity for referral and diagnosis. Females with more externalizing symptoms were also referred more often, sug- gesting that because externalizing disorders are not in line with what is considered normative for females, they are more easily recognized and referred for assessment than those with internalizing symptoms on their own. Gender bias not only occurs in clinical settings but also in the perceptions of parents and teachers, which may impact the rate in which males and females are referred for treatment.
Ohan and Visser (2009) asked parent and teacher participants to read a vignette describing a child displaying symptoms of ADHD. Vignettes did not differ, other than half of participants read a vignette describing a child with a male name and the other half read a vignette describing a child with a female name. Participants were then asked to rate their likeliness to recommend or seek services for the child described. Both teachers and parents were less likely to seek or recommend services for girls than boys in these vignettes. There is also gender bias in the research informing diag- nostic criteria. Hartung and Widiger (1998) examined 243 empirical studies published in the Journal of Abnormal Child Psychology over the 6-year period between publica- tion of the Diagnostic and Statistical Manual of Mental Disorders (DSM) DSM-III-R (1987) and the publication of the DSM-IV (1994). Seventy of those studies concerned ADHD, with 81% of participants being male and only 19% female. Other studies looked at in this review also found gender bias in participants; of 243 studies that stated partici- pant gender, 71% included both boys and girls and 29% (70 studies) were confined to one sex. Of these 70 single-sexstudies, 99.6% were studies of male children.