More than half of adults with ADHD prefer to keep their diagnosis to themselves, according to a recent survey of 2,100 adults conducted online by The Harris Poll by Understood.org. However, an even more worrying pattern emerges when we break down the results by gender: 66% of young women (ages 18-34) prefer to remain silent, compared to 42% of young men with ADHD.

Why women with ADHD don’t disclose their diagnosis

The results of the survey partly suggest that women with ADHD are perceived differently than men with ADHD – a result with which more than half of the survey participants (three quarters of them women) agree.

We know that self-stigma is a major barrier to seeking professional help. (Footnote 1) While the survey results are specific to ADHD, they speak to a larger societal phenomenon: individuals internalize public stigma, such as stereotypes, prejudices, and discriminatory attitudes that are endorsed by the public. We see examples of internalized public stigma related to women’s mental and general health, including their ADHD diagnosis.

Although learning and thinking disabilities are equally common in men and women, ADHD is diagnosed just as often in girls as in boys. (Footnote 2) Many women receive their ADHD diagnosis in their 30s, 40s, and beyond. If a woman is diagnosed with ADHD later in life, she has likely spent decades struggling without understanding why. A late-life diagnosis can trigger frustration, self-doubt, and anxiety.

The researchers’ assessment tools are based primarily on studies of boys and are not tailored to the female population. Gender bias in the testing tools is one of the main reasons why ADHD often goes undiagnosed in women and girls. This was admitted by 87% of survey participants, according to the survey.

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Women diagnosed with ADHD later in life often report how hard they tried and invested in getting answers, but doctors routinely dismiss their concerns as “hormones,” “mom brain,” or “lack of self-care.” Many are diagnosed with depression or anxiety instead of ADHD.

After years of unsuccessful treatments, they finally received an accurate diagnosis – and were blamed for their lack of compliance. The experience of their doctors meeting their initial concerns with disbelief has, in a way, trained the women to say nothing.

Many women develop a core belief that “there is something wrong with me.” And that doesn’t change overnight. Often, women need time, support, and community to learn how to express their new diagnosis in a way that feels right for them.

Choosing not to disclose an ADHD diagnosis is a logical response to stigma, prejudice and backlash. Half of adults surveyed believe the negative stigma surrounding neurodiversity is stronger today than ever before. Among respondents with learning and thinking disabilities, 59% fear that disclosing their diagnosis would have a negative impact on their career. Nearly one in four respondents who asked for workplace accommodations said they lost their job or were demoted after asking. With such a workplace culture, it’s no surprise that people stay silent.

(Take the ADHD self-test for women)

How to create an inclusive culture

The culture that too often makes silence the best option for women needs to change. The solution to silence is not as simple as telling women to “speak up” in the workplace. We need to create a culture that centers women’s voices and needs. We need to raise awareness and combat the stigma around neurodivergence (especially ADHD and dyslexia) in women. We need better resources, awareness and action to initiate change towards progress.

Here are some steps individuals, providers and employers can take to create a more inclusive culture:

• Learn: Patients, employers and providers need to abandon old assumptions and awaken curiosity, because information about ADHD has historically been based on homogenous, predominantly male experiences. Even for the most informed individuals, there is still much to learn and unlearn.
• Embrace the grey: Disclosure is not “on” or “off.” You don’t have to share your diagnosis with everyone. You can decide who, when, and how much you share.
• Hear: Often people don’t say anything because they won’t be heard or understood. For providers, this means they need to actively listen to their clients and patients. Employers need to actively listen to their employees and take their concerns and requests seriously. Each individual needs to listen to their inner voice without judging.

Inclusive culture: next steps

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