(UN)SEEN:
Creating an educational tool for and about women with ADHD
Project Overview
The Problem
50-75% of women with ADHD go undiagnosed due to numerous factors, including the unique presentation of symptoms in girls. Undiagnosed and/or untreated ADHD can cause life damaging consequences. Research and science are finally focusing on ADHD in women, but the general public remains largely unaware of the issue.
The Solution
The main goal for my solution was to create a tool for women with ADHD to aid in their journey and understanding of ADHD from pre to post-diagnosis.
ROLES
Solo Project
Research, Ideation,
Wireframing, UX + UI Design
TIMELINE
8 weeks
July - August 2021
Conducted Remotely
TOOLS
Notion, Figma, Figjam, Zoom, Otter.ai, SimilarWeb, Google Docs, Slides, Trends
Introduction
As the final course in the MPS UXD program at MICA, Capstone and Reflection requires each student to create a project and a summative report presentation that represents the culmination of learning throughout this program.
For my capstone project, I wanted to tackle a topic that I felt passionate about and that would be impactful in a meaningful way. As I was brainstorming ideas, I landed upon my own recent experience as the spark for this project.
My personal story
During the COVID-19 pandemic, I had a lot of exciting transitions that included moving into my first apartment without roommates and my job becoming fully remote which allowed me to work from home.
However, these changes highlighted what I now know to be executive dysfunction when I struggled to keep up between juggling my job, grad school, and household chores and I realized I could no longer use the fact that I wasn’t home enough or “I don’t have the time” as an excuse.
I knew something was off and my mental health was beginning to suffer, but I suspected it was just my anxiety and depression acting up (especially given the state of the world), despite the fact that I didn’t feel either condition matched what I was experiencing and how I felt internally.
October 2020 was ADHD Awareness Month and someone I follow on social media had posted a few comics describing what it’s like to have ADHD. I found that I related to all of them a little too well, suspiciously well, so I immediately began to investigate and look up the symptoms. I found that it explained everything I had been experiencing, not only that year, but for my entire life.
By November, only a few weeks later, I had an official diagnosis of ADHD - Primarily Inattentive type.
One of the comics that was the catalyst for seeking my ADHD diagnosis.
Ironically, the artist behind these comics was also diagnosed at the same age of 28 years old and our experiences aligned almost to a T. I would have never figured out that I have ADHD myself given that previously all I knew about it were the stereotypes and tropes of ADHD being a hyperactive little boy in school that can’t sit still. It wasn’t until I heard of someone’s personal experience that mirrored my own that I even considered it a possibility.
My experience is not unique
As I began to learn more about the disorder, I saw that I was not alone and my late-in-life diagnosis is actually incredibly common for women.
“The average age of diagnosis for women with ADHD, who weren’t diagnosed as children, is 36 to 38 years old. Before that time, girls and women are often misdiagnosed as having a mood or an anxiety disorder.”
— Patricia Quinn, M.D.
In fact, the majority of girls and women don’t get diagnosed at all. The statistics are staggering and it is estimated that 50-75% of women with ADHD go undiagnosed.
50-75% of women with ADHD go undiagnosed (Source)
It quickly became apparent that there is a massive problem surrounding ADHD awareness that disproportionately affects girls and women and I knew that I wanted to make this the focus of my capstone project.
Background
What exactly is ADHD? Beyond the stereotype
When you hear the word “ADHD”, you might picture a hyperactive little boy being disruptive in the classroom. Perhaps you think it’s little more than bad behavior, poor parenting, or too much sugar, not an actual disorder.
But ADHD is so much more than an inability to focus and its impacts expand far beyond the stereotypes. So first, let's bust some myths and talk about what ADHD is not.
Common misconceptions of ADHD. By Dani Donovan.
ADHD is not:
1. Gender-exclusive
ADHD occurs in both genders and the diagnosis gap is likely the main contributor to the belief that it only affects boys
2. Only in childhood
Acknowledgment of ADHD in adults has been validated by recent research and the majority of people diagnosed as children show symptoms into adulthood
3. Just hyperactivity
In 1994, the DSM-IV redefined ADHD to include three presentations: inattentive, hyperactive, and combined
One of the main symptoms of ADHD that is not well-known to most is executive dysfunction. Executive functioning involves the ability to do the following:
1. Analyze a task
2. Plan how to address the task
3. Organize the steps needed to carry out the task
4. Develop timelines for completing the task
5. Adjust or shift the steps, if needed, to complete the task
6. Complete the task in a timely way
Executive dysfunction does not exist in a bubble and only affect performance in school. As an adult, it impacts all areas of life such as employment, finances, relationships, personal health, and even things you enjoy and want to do like hobbies.
Why are boys diagnosed and not girls?
There are a number of reasons as to why boys are more likely to get diagnosed and treated for their ADHD as children. The main factors impacting diagnosis rates in girls are:
1. Referral bias
Parents and teachers are more likely to refer boys to get screened due to rampant stereotypes and lack of awareness. (Source)
2. Gender bias
Societal expectations for girls explain away many of their symptoms. Girls are also better at masking or hiding their symptoms to conform.
3. Diagnostic criteria
The bulk of existing research focuses on boys and their experiences with ADHD, and is what the current diagnostic criteria is based on. Doctors also receive little to no training or education about ADHD.
4. Presentation of symptoms
Girls typically have the inattentive presentation of ADHD, which is not outwardly disruptive to others, but can wreak havoc internally on emotions and self-esteem.
Why should we care?
1. Delay in diagnosis is life damaging
Undiagnosed ADHD can cause life damaging consequences. Delay or lack of appropriate diagnosis and treatment can result other conditions such as depression, anxiety, bipolar, learning disabilities, OCD, PTSD, drug and alcohol addiction and eating disorders. (Source)
2. The female experience is invisible
ADHD is commonly associated with children and men yet 4% or 6 million adult women live with ADHD. Women face unique challenges due to lack of scientific knowledge, resources, or public understanding. Stigma leads many women with ADHD to stay silent about their experiences feeling alone, confused and misunderstood. (Source)
3. There’s a rapidly growing need
Adult women with ADHD between the ages of 24 to 36 are the fastest growing population undergoing treatment for ADHD. In the last 5 years the use of ADHD medication by this age group of women increased by 85%. There is a growing group of millennial women who are searching for relatable and relevant resources for their experiences. (Source)
Fighting mental health stigma online
Research has shown that social media and online communities can benefit those with mental health struggles by giving them peer support and fighting stigmas.
Conceptual model illustrating potential opportunities that may be available to individuals with serious mental illness after visiting an online community of peers. (Source)
In addition, ADHD diagnoses have spiked during the pandemic due to an exacerbation of symptoms and many people spending more time on social media, like TikTok, where users have been sharing their experiences and struggles with ADHD and other conditions. (Read More)
What do we do about it?
In my initial ideation of potential solutions, I aimed my focus more on symptom management and treatment through tools built for ADHD brains, such as productivity tools, an online community, or a health and wellness app for women with ADHD.
However, I struggled to come up with concrete solutions given the fact that every individual with ADHD is so unique and struggles with different things, as well as what works for one person will not work for another.
As I continued researching and sat with my initial ideas more, I realized I needed to zoom back out a bit to the larger issue at hand and what sparked my desire to tackle this topic in the first place: women with ADHD are going undiagnosed and suffering damaging consequences from lack of treatment for so many years.
So, rather than try to tackle the side effects, I decided to solve for the root of the issue. Boiling down what I found in my initial research points to lack of education and awareness around how ADHD presents in women as the biggest obstacle to preventing diagnosis. If there is more education and awareness around ADHD in women, more girls will get diagnosed and treated in childhood, setting them up for success and reducing the need for significant help later on.
Problem Statement
50-75% of women with ADHD go undiagnosed due to numerous factors, including the unique presentation of symptoms in girls. Undiagnosed and/or untreated ADHD can cause life damaging consequences. Research and science are finally focusing on ADHD in women, but the general public remains largely unaware of the issue.
How might we increase awareness and provide education around how ADHD presents in women in order to empower individuals to advocate for screening, diagnosis, and treatment?
Users and Audience
My primary audience and target user base is women with ADHD, whether they have been officially diagnosed or not.
Secondary users include friends and family of women with ADHD, educators, employers, and eventually medical professionals. These user types may be helpful in identifying symptoms and making referrals for screening, as well as providing support my primary users.
Scope & Constraints
During week one of this project, I outlined a project plan to create a timeline for activities and identify deliverables for the end result. My planned activities and deliverables included the following: screener and script of questions of user interviews, desk research, 6 user interviews, personas, competitive analysis, user flows, low fidelity wireframes, visual design guidelines, findings report & presentation, and case study.
The biggest constraints I had to contend with were a short timeline of 8 weeks, limited budget, and running the entire project solo.
Process
My process utilized a bit of agile methodology and consisted of the following phases: planning & strategy, research & discovery, define & analyze, design, and conclusions.
A timeline of my methodology and activities conducted.
Planning & Strategy Week 1
I used Notion as my project management tool and research repository, keeping it up to date as I completed activities, pivoted ideas, and created final deliverables.
Research & Discovery Week 2 - ongoing
From the kickoff of this project and throughout my timeframe, I conducted extensive desk research to gain a solid foundation of knowledge and insights into issues facing women with ADHD and fully immerse myself in this project. My desk research included examining scientific studies, scholarly articles, trusted sources and organizations devoted to ADHD, competitor research, gathering of statistics/data, and even my own personal experience. This research heavily informed my design decisions later on and was the basis for my problem statement as well as my final proposed solution.
Competitive Analysis
I examined many competitors that are currently providing information about ADHD on the web and via social media to look at what already exists and identify areas of opportunity.
Top 3 Competitors:
1. I Am Paying Attention
“The late diagnosis neurodivergent club for women & non binary badasses.” (UK-based)
2. ADDitude Magazine
“The world’s most trusted resource for families and adults living with ADHD and related conditions, and for the professionals who work with them.”
3. ADD.org (ADDA)
“ADDA is a worldwide inclusive community of supportive ADHD adults who make it possible to thrive with ADHD in today’s world.”
Areas of opportunity identified and how they translate into features:
Not gender-specific or tailored for women = focus content on women-specific issues only
UI/UX needs to be engaging enough to retain users but not overwhelming or distracting = careful balance for visual design, must be thoughtful and intentional
Too many topics/other conditions covered = keep content relevant and specific to ADHD and not comorbid conditions
Sterile, medical descriptions of symptoms can be scary or intimidating = warm, friendly branding and tone
Most sites discovered through searching “adhd” = ensure SEO allows for other keywords to lead to site
No easy way to highlight/save relevant info = bookmark content
No paywall = full access for free, not selling anything (services or products)
No personalization/customization = onboarding quiz, user profile/settings
User Interviews Weeks 2-4
Due to the personal nature of my topic and not wanting to make participants feel uncomfortable to share their experiences honestly, I primarily did my recruiting for interview participants through personal connections and snowball sampling. My screener was pretty straightforward in that I essentially was just looking for adult women that either had a formal diagnosis or suspicion of having ADHD.
I chose not to do a survey as I really didn’t need any more quantitative data given the large amount of existing research and statistics on the topic of things like diagnosis rates, symptoms, and presentations. For my project, I mostly needed qualitative data on individual experiences and ways in which people found out about their ADHD. In all, I spoke with 6 users about their personal experiences and understanding of ADHD in women.
To find key takeaways from my interviews, I used a combo of the atomic UX research model and affinity mapping to make connections and form a solid understanding of my target users' wants and needs.
Key insights from user interviews:
Users find most of their information through the internet (Google)
There is still a big stigma attached to having ADHD and perceptions of ADHD have not caught up to recent research
Stereotypes persist and are often form the basis of knowledge users have of ADHD
Users have a limited understanding of how ADHD presents in women specifically
Most users only became aware of or started to suspect they may have ADHD due to others close to them receiving a diagnosis
Personas Week 3
Since a big part of my project is about building empathy for the audience, I found it important to create personas.
I crafted them based on my desk research and user interviews and included background information, goals, fears, and frustrations to round them out.
I created three personas in total which covered undiagnosed women, recently diagnosed adults, and adults who were diagnosed as children but stopped treatment. However, these do not include nor cover all unique cases. I did not create personas for my secondary audience given that they were a lesser priority and the the short timeframe did not give me time to interview them.
I used my personas as guidance for which features and content to include in my site and to think about how each user might feel as they navigate searching for more information on ADHD
I also used my personas to formulate user stories to help me think about how each user might feel as they navigate searching for more information on ADHD.
User Flows + Features Weeks 3-4
Before creating any user flows, I created a site map to think about what the main navigation choices would be, as well as what pages and types of content I wanted to include. I ended up revising my initial site map to reprioritize features and content as I made new discoveries in research.
Original site map
Revised site map to reprioritize #UnSeenStories feature
Considerations for design and features:
Accessibility = include options for high contrast, reader view, increased text size
Most interviewees found out about ADHD through people around them = share stories/experiences with ADHD + diagnosis
Barriers to entry and access an app would inhibit users = responsive website (desktop + web)
Social media is highly effective, algorithms are doing something right = recommended content
Need to build trust = clearly cite sources, only include content written/reviewed by SMEs
One stop shop = curate content based on onboarding quiz
I then moved into user flows, and crafted one for basic navigation and the sign up/log in process. I found it difficult to find the time to flesh out full flows for each section of the site, but once a user completes onboarding and creates their profile, most of the site was made for browsing content.
Basic user flow for navigation
Wireframes Weeks 5-6
Once I brainstormed features and the site map, I started making lo-fi, black and white wireframes to sort out page layouts as well as refine the UX flows throughout the site.
My wireframes were created in Figma where I created basic building blocks to quickly ideate and refine layouts.
Lo-fi landing page mockup
Onboarding quiz (lo-fi)
Customizable dashboard with recommended content after
completing onboarding quiz
After I sat with my initial layouts for a bit while I continued to research, I found that I wanted to reprioritize some content and features and I marked up some of my wireframes to notate my thoughts and the changes I wanted to implement.
Accessibility and Visual Design Week 7
Visual design was informed first and foremost by web accessibility standards, but I also considered color theory, what competitors and comparative sites were doing, and general design inspiration I gathered on the web to fit the feel and tone I wanted to convey.
Most of the guidelines I referenced and compiled came from W3C’s Making Content Usable for People with Cognitive and Learning Disabilities.
The personas and user stories were also incredibly insightful, especially given they had a user persona with ADHD. You can read the persona and stories here.
Design system created in Notion
The important factors for visual design were a typeface that is legible for readers with dyslexia and visual impairments, colors with high contrast, as well as branding and voice that conveys a warm, friendly, and trustworthy tone.
I ended up choosing Work Sans as the main font for headlines and body copy, colors were warm, natural tones, and tone for copywriting was casual, friendly, clear and concise.
Outcomes
All in all, I ended up with extensive research and guidelines in preparation to execute a high-fidelity prototype for the next step which would be user testing and validation. I laid the groundwork to ensure that the user experience and design would be implemented properly from the get-go rather than skipping important steps and sacrificing the research necessary to create a successful prototype.
The final feature set I landed upon for MVP and demonstrated in my wireframes and site map was:
An onboarding quiz for personalized content + recommendations
Stories shared from the community about diagnoses
The ability to save/bookmark content + add notes
Exclusively curated content relevant to women with ADHD
I also created a mockup of the landing page to test my visual design guidelines and as proof of concept for high-fidelity.
High-fidelity landing page concept
Reflection + Next Steps
Being part of your intended audience can be taxing
Most good UX advice will stress the importance of avoiding bias and conducting thorough research as to not make assumptions based on your own experience and desired outcomes. However, I found myself in a unique position where I was my own target user base and uniquely fit the exact problem I was trying to solve for which was demonstrated through research to not be an experience exclusive to me but a problem facing many others. Being my own target audience for this project was both incredibly helpful for insights into solving for my problem, but also incredibly difficult to cope with at times for a multitude of reasons, namely being that it can be emotionally taxing to read some of the bleak headlines and articles out there about the impacts of ADHD, especially when untreated or undiagnosed. Also, seeing so many others going through the same emotional rollercoaster of grieving the life they lost due to not being diagnosed sooner mirrored my own grief that I very recently went through myself.
I also didn’t previously consider the irony of fighting my own ADHD symptoms throughout this process in order to execute this project in such a short amount of time. Receiving a diagnosis less than a year ago after 28 years of living with it does not prepare you to manage symptoms, which is another reason I wanted to build the platform I envisioned.
We need collaboration in UX design
Most of my previous experience in UX design has been as part of a team and I had not ever run a UX project from start to finish alone. This experience proved that a solo UX project is extremely difficult to conduct and pull off when you are wearing all of the hats. It does have some perks, such as having full freedom with design decisions (so long as their founded in research), but introduces extra struggles when it comes to project management, brainstorming, and avoiding bias. This project has only reinforced something I already felt strongly about: we need and thrive on collaboration as designers.
Timing is everything
Not only did I face the challenge of being the sole designer conducting this project, but was given an incredibly short timeframe to go through all phases of the project. Given my initial outline of scope and deliverables before kickoff, I spent far too much time in the research phase which left little to no time for design. I could have pivoted to design earlier on in the timeline, however I feel I gained a lot of valuable insights and guidelines for how to develop my proposed solution that would have inevitably impacted design down the road had I breezed past covering all my bases.
Keep scope narrow
Additionally, I found myself sympathizing with my competitors in that ADHD has such a large breadth of impact, it is incredibly difficult to not cover all the symptoms, comorbid disorders, and ways in which it can show up in our lives. However, I do believe it is worthwhile to focus solely on the presentation in women and the lack of diagnosis or receiving misdiagnosis which robs us of so much. It can quickly and easily become overwhelming when you are presented with so much information at once.
Things are looking up
Lastly a broader reflection and closing thought, is that unfortunately stigmas around mental health and disorders still persist. However, it is continually getting better every day, especially the more we continue to be open and talk about it. The biggest key to reducing stigma and getting help to those that need it is education and awareness. Ultimately, we all just want to be seen and understood.
Next steps for this project moving forward:
For design:
Further prototype development, refinement and iteration
User testing of the high-fidelity prototype
For research:
Recruit more users for interviews and include more diversity in user types not already represented
Speak with SMEs
Expand accessibility features and support to include
After validation, move the prototype to the web and make it live
Social media + marketing to promote the site and reach the target audience
For further reading about ADHD in women:
ADHD in Women and Girls
Sources
Adhd: The white boy bias. GeekGirlCon. (2017, December 5). https://geekgirlcon.com/adhd-the-white-boy-bias/.
ADHD in Women 101. Kaleidoscope Society. https://www.kaleidoscopesociety.com/adhd-in-women-101/.
Can adults have inattentive ADHD? Inattentive ADHD Coalition. (n.d.). https://www.iadhd.org/can-adults-have-inattentive-adhd.
Editors, A. D. D. (2021, April 19). Adhd symptoms unmasked by the pandemic: Diagnoses spike among adults, children. ADDitude. https://www.additudemag.com/adhd-symptoms-diagnosed-treated-in-pandemic/.
Editors, A. D. D. (2021, April 7). "My adhd was misdiagnosed for decades:" stories of misread symptoms, advocacy & epiphany. ADDitude. https://www.additudemag.com/adhd-misdiagnosis-stories/.
Ellen Littman, P. D. (2021, June 25). Women with adhd: No more suffering in silence. ADDitude. https://www.additudemag.com/gender-differences-in-adhd-women-vs-men/.
Making content usable for people with cognitive and learning disabilities. W3C. (n.d.). https://www.w3.org/TR/coga-usable/.
McCarthy, L. F. (2021, January 19). Women, hormones, and ADHD. ADDitude. https://www.additudemag.com/women-hormones-and-adhd/.
Naslund, J. A., Aschbrenner, K. A., Marsch, L. A., & Bartels, S. J. (2016, January 8). The future of mental health Care: Peer-to-peer support and social media: Epidemiology and Psychiatric Sciences. Cambridge Core. https://www.cambridge.org/core/journals/epidemiology-and-psychiatric-sciences/article/future-of-mental-health-care-peertopeer-support-and-social-media/DC0FB362B67DF2A48D42D487ED07C783.
Quinn, P. O., & Madhoo, M. (2014). A review of attention-deficit/hyperactivity disorder in women and girls: Uncovering this hidden diagnosis. The primary care companion for CNS disorders. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4195638/.
Rodrigo Pérez Ortega, K. M. (2020, April 24). Under-diagnosed and under-treated, girls with adhd face distinct risks. Discover Magazine. https://www.discovermagazine.com/mind/under-diagnosed-and-under-treated-girls-with-adhd-face-distinct-risks.
Russell Barkley, P. D. (2021, July 20). What is executive function? 7 deficits tied to ADHD. ADDitude. https://www.additudemag.com/7-executive-function-deficits-linked-to-adhd/.
Russell, Q. (2019, April 10). Opinion: Misbranded and misconceived, living with ADHD is different than the public perceives. The Appalachian. https://theappalachianonline.com/opinion-misbranded-and-misconceived-living-with-adhd-is-different-than-the-public-perceives/.
Sibonney, C. (2021, April 7). The pandemic surprise many women did not expect? An ADHD diagnosis. SELF. https://www.self.com/story/adhd-diagnosis-pandemic.
Slobodin, O., & Davidovitch, M. (1AD, January 1). Gender differences in objective and subjective measures of ADHD among clinic-referred children. Frontiers. https://www.frontiersin.org/articles/10.3389/fnhum.2019.00441/full.
Williams, C. (2021, April 7). TikTok is MY Therapist: The dangers and promise of Viral #MENTALHEALTH Videos. ADDitude. https://www.additudemag.com/tiktok-adhd-videos-self-diagnosis-support/.