Women with ADHD: underdiagnosed but finding support through community, resources

Magdalene Marcus interview female students and staff at ARHS about their experiences with ADHD.

Suzy sits at her desk, looking out the window, watching the birds flying high in the sky, she imagines herself soaring through the window and joining them up above to feel the cold air on her skin and watch as everything below her gets smaller and smaller. 

However, her attention is brought back to the blank screen of her laptop in front of her. What should be the 5-page essay due at the end of class stares blankly back at her, illuminating her face with the white light. She closes her eyes trying to think of where to begin and then takes out her book flipping through the pages to gain some understanding, but the words are meaningless and unhelpful. The only thing she can focus on is the repetitive sounds of the classroom that replay in her mind, getting louder and louder, like a broken record. Fingers hitting keyboards, tapping feet on the tiled floor, the clock monotonously ticking, the hum of music through another student’s headphones, and the faraway hum of moving conversation as people walk through the halls talking. It all feels overwhelming and she is reminded of how this is simply the way it will always be for her. 

She looks up from her laptop and glances around the room at all her peers typing away. For some reason, she’s never been able to keep up with the students around her. Even if she can maintain good grades by working twice as hard as everyone else and reteaching the things she can’t focus on in class, it feels like she will always be inferior. None of her teachers, friends, or family have ever noticed her struggling, so it must be her all fault…because what else would it be? 

Studies estimate that as many as 50% to 75% of girls with ADHD are missed. Millions of women all over the world can go through their whole lives without receiving a diagnosis of ADHD. According to the latest National Health Service figures, from 2019 to 2020 more than 100,000 men have been diagnosed with ADHD while just 33,000 women received a diagnosis. 

The lack of research stems from historical sexism still intertwined in our society, which now plays into women being taken less seriously and more overlooked when they ask for help. This leads to a huge disadvantage throughout women’s lives in their ability to achieve internally with their self-image. The difference in women’s and men’s biological makeup plays a huge part in the misconceptions surrounding the symptoms of ADHD.

The DSM is the manual of mental health and cognitive function for doctors in the US. But the DSM’s definition and requirements for the diagnosis of ADHD come from research primarily done on men. This is a large problem in the female-assigned ADHD community.

The age at which a girl hits puberty has a large effect on the presentation of her symptoms. As stated in a recent study by Dr. Susan Young, the head of U.K.’s Psychology Services Limited, boys have a 3-1 ratio of being more likely than girls to have ADHD. But girls are more “likely to stay unidentified and untreated.” Without a diagnosis, women miss out on the choice of treatment with medication, which can also have a large effect on their lives. People with undiagnosed or unmedicated ADHD have a higher risk of negative life outcomes such as divorce, job loss, and addiction, according to “Females with ADHD,” published by the National Institute of Health. Until we start facing the truth surrounding women’s mental health and inequalities, we will never be able to create an equal prosperous society, where everyone can get the help they need and deserve.

We spoke with female students and staff at ARHS who were diagnosed or undiagnosed with ADHD and found that the diagnosis gave them important tools to better understand themselves not just as students but as people. The early years of girls with ADHD can be critical in the process of getting a diagnosis later in life. 

Sophia Pope, a senior at ARHS, was diagnosed with ADHD in elementary school. She recalls that her parents first became concerned when they saw how she was doing in school. “My parents noticed that I was really struggling with doing my homework. I really just could not focus and get anything done,” she said.

Similarly, Autumn Tarbox, a junior at ARHS, got her diagnosis at a young age. She says she doesn’t remember her diagnosis, but her parents noticed she was hyperactive and impulsive. They got her tested and diagnosed at only six years old. She shared, “My parents have never made me feel ashamed of being diagnosed this way; being diagnosed young was definitely helpful. My journey with the diagnosis is way different than someone who gets one way later in life.”

Some people struggle a lot more to get a diagnosis. An anonymous teacher shared that she has not been able to get a diagnosis, due to the process being long, tedious, and difficult. She went to school in a period when lots of “hyperactive” boys were diagnosed with ADHD, and that experience formed her idea of what ADHD was and looked like. But ADHD looks different in everyone, especially the differences between ADHD in girls versus boys. ADHD, especially undiagnosed ADHD in women and girls, can cause them shame. 

“Is it true that you are the world’s worst failure when you forget your keys? No it’s not, but it feels like it at the time,” she said. “The messaging I have around what ADHD looks like isn’t how it looks for me, but then as I talk to more women who received late diagnoses, I realized that the shame piece feels very resonant to me.”

Pope said her ADHD has both positive and negative effects. It benefits her socially, as she finds it easy to talk to people. But when your brain works at a much faster rate, some others experience negative effects socially. For example, Tarbox says, “Because there is so much going on in your brain, talking fast or stuttering, while you’re talking, happens, because I’m trying to get my point across well articulated.” 

Pope said it also helps her with her hobbies, such as art. “I’m very focused on the things I’m actually interested in, and invested in doing. It definitely heightens my ability to do those things outside of school,” she said. But, it can harm her academically. “If there’s homework, or anything unstructured, it’s very hard for me to get focused. Usually, during the school year it really controls my time,” she said. She still struggles with homework. “I would sit at the dinner table for hours after school just staring at my math homework and I just couldn’t do it,” she noted.

Tarbox experiences similar harmful effects in her academics. She says, “It’s different for [neurotypical students]. They procrastinate willingly, but they can get it done in the end. For me, I procrastinate and then the shame cycle starts, and then it gives me so much anxiety that I can’t do my work. I want to do it, but you can’t.”

Pope has struggled for five years to find an ADHD medication that worked for her. She reveals that she has tried “quite literally every single ADHD medication” and “even an anxiety medication” but none of them have been fully beneficial to her. She said their side effects have been more intense and harmful than the benefits, with one even risking her health. “Maybe I’ll be able to get some work done, but I will not eat. At one point I stopped taking meds because I was so underweight. The benefits don’t outweigh the negatives for me,” she said.

Tarbox, on the other hand, found medication relatively helpful. She started taking medication at twelve years old, which helped her focus. Her parents also noticed a difference in her attention. However, as she got older, she found the medication to be less effective but didn’t know where to start with a new one. 

Pope sometimes feels like she has to overcompensate for turning in late assignments, and they have to be “golden and perfect to make up for the fact that it’s late.” Tarbox shares a similar experience of perfectionism pressure, saying that “ it feels like you can’t make a mistake or else someone will be like “Oh they’re so out of control, oh they’re so stupid. You just feel like you have to do everything perfectly.” 

Pope wants educators to know “We are trying, we are not lazy or unmotivated.” Tarbox shares a similar message, “Just because I’m organized doesn’t mean I don’t have ADHD. Just because I’m procrastinating doesn’t mean I don’t want to do the work, it’s because I physically feel like I can’t.”

Obtaining accommodations for Pope’s ADHD was unsuccessful. She shared that her parents brought the diagnosis to her school in third grade, hoping to get her an IEP. The principal at her elementary school said she was “not disruptive enough in class to get an IEP,” diminishing her struggles. 

A 504 is a plan developed for a child who has a physical or mental disability in order for them to get accommodations that will ensure their academic success. Tarbox was able to get a 504 plan, where she gets extra time on tests or long projects, is given the option to opt out of public presentations, and is able to take walks during MCAS.

She recalls, “I remember, in MCAS in elementary school, I got to be taken out of the room so I could go take a walk. At the moment, when it was dead silent and everyone was working, the teacher said ‘Come on Autumn, let’s go take a walk.’ I was so ashamed of it, but as soon as I was out of the classroom I was like ‘This is great! Sucks for you guys, you have to sit there.’”

In order to help women get the diagnosis and resources they need, awareness of this issue must be spread as it is unknown in many communities. Organizations that specialize in helping people with ADHD, and specifically, women with ADHD can be a great tool for individuals in need of support. 

A few organizations include the National Center for Gender Issues in ADHD, a site created to inform people about ADHD in girls and women and publicize articles pertaining to those specific audiences affected. Another is ADDA (Attention Deficit Disorder Association), the world’s largest organization focused exclusively on helping adults with ADHD to better their lives and connect with others sharing the same experience. Finally, Understood is a nonprofit organization that provides online resources for ADHD. 

All the way in Stockholm, Sweden is the headquarters for Qbtech, a Swedish medical and tech company that specializes in simplifying the diagnosis of ADHD. They create software that psychologists can use to diagnose patients more easily (Reuterskiöld). Qbtech created an objective test that is widely used, FDA-cleared, and CE-marked to measure the three main symptoms of ADHD: activity, attention, and impulsivity (Reuterskiöld).

The average test typically lasts between 15 and 20 minutes. This technology has helped immensely to optimize and improve the quality of treatment for those impacted. Another site with an ADHD test and overall support is Cerebral. Founded in 2019, the site offers free mental health tests, online therapy that focuses on specific conditions, and easier access to medication (Mou). 

Both companies and the other mentioned organizations are great resources for educating and helping those affected. Many struggle to find support and help when they need it most; these sites can become useful resources that increase diagnosis and or support and positively affect the livelihood of women for years to come.