Unmasking Identity: How Late Diagnosis Changed My Life
Photo by Kattecat.
In celebration of my first Autism Acceptance Day since finding answers about autism, I wanted to share my story with others to foster community and normalize neurodivergence.
From a young age I knew something was different about myself, but I wasn't sure what it was. I have high empathy and a stutter, which came with difficulties growing up. Most people liked me, but sometimes I’d experience pushback. Somehow, during those interactions, I left people entertained, confused, or visibly uncomfortable. This left me stumped, as I didn't know what I was doing wrong.
I masked my ADHD and autism, and they were missed in childhood, as happens for many women (Taylor, 2022). I hid my other neurocognitive traits, like auditory processing, demand avoidance, time distortion, and more, under the radar for decades. It wasn't until a decade after college, during the COVID-19 lockdown, that I received a diagnosis and treatment for ADHD, which then allowed me to recognize the autism peeking through.
Learning to survive
By age twelve, neurodivergent children have generally received about 20,000 more negative messages than their neurotypical peers (Jellinek, 2010). Neurodivergent individuals often receive criticism for being "too much" or are told to tone down their energy, among other things. By the time we are midway through adolescence, the collection of criticisms we have received reinforces our conclusion that the world was not built with us in mind.
Despite not knowing my diagnoses, I taught myself to suppress behaviors to meet social expectations—to fly under the radar. This led me to become what our community calls a "high-masking[1]" autistic. The term "masking" describes the actions that neurodivergent people take to try to blend into their neurotypical surroundings. An example is suppressing a stim[2] or other behavior, which we may do to help self-regulate. Masking requires great energy, in addition to the already incredible processing that neurodivergent brains are constantly doing. Prolonged masking takes a toll on neurodivergent individuals, keeping us in a heightened survival state (Bradley et al., 2021).
Throughout my life, I've used my neurodivergent characteristic of hyperfocus to delve into subjects I love and fully immerse myself in. During my free time, I enjoy making music, studying communication, culture, film, and languages, and playing or watching video games, among other things. As a child, I remember leaning into music; singing became one of my favorite outlets. By age ten, I starred in an opera at my local university. I spent hours poring over books, television, and movies on evenings and weekends. I now recognize these as my autistic special interests.
While I could keep up with my peers in high school, I struggled in college due to my undiagnosed and untreated ADHD, and the overwhelming sensory environment. I deeply cared about my classes but couldn’t “do the thing.” I often felt like an impostor; I was smart, but it didn’t always appear on my transcripts. It wasn't until graduate school that I could delve into topics I was passionate about, and there I learned I could excel. Now, later in life, I am using my passion for language and communication to shape my career as a digital marketing professional.
Navigating the workplace
As one of the 15% of full-time employed autistics in the United States (Ohl et al., 2017), switching to a hybrid/remote work environment has been a game-changer for my self-confidence and workplace productivity. I cannot imagine returning to such an overwhelming sensory experience that distracts me from my work, nor the energy expended, during a five-day work week with commuting.
Switching to hybrid/remote work has been a game-changer for my productivity.
Challenges in the workplace may include needing extra time to process information, like reading and writing. I may struggle to understand a concept if I am not given enough context or cannot see an example of something. Neurodivergent individuals are "bottom-up", detail-oriented thinkers, requiring as much information as possible before coming to a conclusion (Ciampi, 2017).
Sometimes, I struggle with visualizing time and managing it effectively. I frequently have difficulty getting enough sleep, which affects my productivity throughout the day. While some days I have excellent speech fluency, on other days, I may struggle to give a presentation. These are just a few aspects of navigating the workplace, and each day presents unique challenges. Nonetheless, I strive to focus on tasks that align with my mental state and energy level for that day.
Making a difference
Like many of my neurodivergent peers, I face challenges in the classroom, workplace, and daily interactions simply because of how I exist. My experiences, as well as those of the neurodivergent community, drive my advocacy work and underscore the importance of creating safe spaces and building supportive communities. Changes are necessary to improve the psychological safety of neurodivergent employees.
As always, disability is not a singular experience (Ladau, 2021). I have described a few of my own lived experiences here, and I am grateful to share them with you in hopes of creating a psychologically safe workplace for neurodivergent individuals. If you have questions about ADHD or autism, or want to learn more about making your team or processes safer for neurodivergent employees, please see the suggestions below.
Notes
[1] As opposed to the offensive “high-functioning” or “Asperger’s syndrome” labels rooted in ableism, which are no longer given as diagnoses according to American Psychological Society guidelines.
[2] The term “stim,” or stimming, is a self-stimulatory behavior that a neurodivergent person might engage in to self-regulate. Stims include certain mannerisms, body movements, posturing, visual stimulation, repetitive behaviors, and listening to the same song or sound repetitively.
Resources
What is AuDHD?
In the neurodivergent community, the comorbidity of both autism and ADHD is referred to as “AuDHD.” See below for a few medical definitions (Smith & Kirby, 2021).
What is autism?
Autism, or Autism Spectrum Condition (ASC), is a developmental condition that affects communication and social interrelatedness. Different people have different challenges and strengths; one person is not necessarily similar to another.
What is ADHD?
ADHD is a developmental condition that affects attention, impulsivity, and activity levels. There are three types: predominantly hyperactive, predominantly inattentive, and combined (both features).
What can we do?
Provide a psychologically safe work environment with a sincere openness to neurodiversity inclusion and accommodation
Host inclusive virtual meetings (Rivera & Joffe, 2023)
It’s okay to keep cameras off! This creates an inclusive meeting space. See this insightful blog post from advocacy organization, Disability:In
Enable captions in virtual meetings; Zoom provides auto-captioning but this needs to be manually activated. Before captions can begin, the meeting’s language needs confirmed
Send out agendas in advance
Follow-up email with accessible documents attached
Use the chat and offer verbal-optional engagement activities (Kahoot activities, surveys, etc.)
Please don’t finish someone’s words or sentences
Provide explicit, written instruction on assignments; due to cognitive load, tasks given verbally might not be retained
Professional development for neurodivergent colleagues
The Great ADHD Reset: I participated in the eighth cohort of this professional development program. Two proudly ADHD women, Margaux Joffe and Cathy Rashidian, lead the Great ADHD Reset program. I’ve enjoyed it so far and highly recommend it to those looking for a place for community and developing professionally via strengths-based coaching. Please reach out to me if you’d like to discuss my experience in the program.
References
Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2021). Autistic Adults’ Experiences of Camouflaging and Its Perceived Impact on Mental Health. Autism in Adulthood: Challenges and Management, 3(4), 320–329. https://doi.org/10.1089/aut.2020.0071
Ciampi, M. (2017, April 23). Bottoms-up: The innovative thinking style of the Asperger’s mind. Different Brains. https://differentbrains.org/bottoms-up-the-innovative-thinking-style-of-the-aspergers-mind/
Jellinek, M. (2010). Don’t Let ADHD Crush Children’s Self-Esteem. Clinical Psychiatry News, 12.
Ladau, E. (2021). Demystifying Disability: What to Know, What to Say, and How to Be an Ally. Ten Speed Press.
Ohl, A., Grice Sheff, M., Small, S., Nguyen, J., Paskor, K., & Zanjirian, A. (2017). Predictors of employment status among adults with Autism Spectrum Disorder. Work (Reading, Mass.), 56(2), 345–355. https://doi.org/10.3233/WOR-172492
Rivera, C., & Joffe, M. (2023, March 1). Neurodiversity & the Art of Self-Advocacy at Work. https://www.linkedin.com/events/neurodiversity-theartofself-adv7033926732919300096/
Smith, T., & Kirby, A. (2021). Neurodiversity at Work: Drive Innovation, Performance and Productivity with a Neurodiverse Workforce (1st edition). Kogan Page.
Taylor, L. (2022, January 20). Why Are Many Autistic Women Missed or Misdiagnosed? | Psychology Today. https://www.psychologytoday.com/us/blog/the-neurodivergent-therapist/202201/why-are-many-autistic-women-missed-or-misdiagnosed
