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Victoria Bennett is the mobile technologies core manager at the Eisenberg Family Depression Center. She shared her story in honor of Mental Health Awareness Month. 

As a child and into my twenties, when asked what I wanted to be when I grew up, I’d reply, “normal.” This wasn’t a joke; it was clear I was different. I just didn’t understand what made me different.

In 2021, at age 49, a neuropsychological evaluation provided answers. I am autistic with ADHD (AuDHD). Due to family history, I’d suspected that I was autistic. It felt like familiar territory. The ADHD was unexpected and less familiar. Turns out, I had a lot to learn and maybe even more to unlearn.

Autistics are like fingerprints; each one is unique. This is a glimpse into my journey.

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How did they miss this?

Receiving a later-in-life diagnosis involves reliving your life through the new lens of AuDHD. Questions arise, such as “How did everyone miss this?” and “What would my life be like had we known all along?”.

As a young child, I remember walking on the tops of my toes. There is a family story of how I refused to speak, relying on my older brother to communicate for me. Potty training came late, and bed-wetting continued into elementary school. I spent many holiday gatherings playing by myself under my grandmother’s buffet. My cousins still complain that I wouldn’t share my toys with them – apparently, I had the best toys. My kindergarten report card stated, “does not play well with others.” I grieved the loss of my cat more fiercely than the loss of my beloved grandfather. The young couple next door allowed me to read every book in their library. I suspect they offered books so I wouldn’t spend so much time following them around asking questions. I was obsessed with fairness. I struggled with penmanship because I couldn’t (and still can’t) hold a pencil properly. I was often teased for being naïve or for taking things literally. I didn’t understand that rules could be situational, and I had extreme distress when others didn’t follow the rules.

These behaviors weren’t outside the norm in my family. I was assigned labels like strong-willed, stubborn, and emotional. As I got older, I learned to conceal behaviors that got a negative reaction and adopted behaviors that were rewarded.

Disclosure and stigma

I pursued diagnoses when I was experiencing what I now recognize as autistic burnout. To request accommodations, my employer required a professional diagnosis. While there are many valid reasons not to get a diagnosis, my situation made diagnosis essential to staying employed while regaining my health.

After diagnosis, I decided to change jobs. I was strongly advised by my therapist and other autistics not to disclose being AuDHD while interviewing. They recommended either never disclosing or waiting until people got to know me in a new job. I found this advice perplexing. I was so excited to finally be able to explain my differences and with a formal diagnosis; didn’t the American with Disabilities Act protect me? For over 25-years, I had navigated work with neither an explanation nor legal protections. Yet, people that had traveled this path were convinced disclosure was unsafe. I listened to them, to an extent. To prepare for interviews, I explored how I had been misunderstood in the workplace and developed language to discuss my differences. This allowed me to share my strengths and needs while never mentioning autism or ADHD.

A few months into my job at Michigan Medicine I started to tell my colleagues about my diagnoses. I am now openly AuDHD in all parts of my life. It’s important to me that others see AuDHD folks existing in all the places that life happens.

Masking

I am considered high-masking. This means I suppressed my AuDHD traits well enough to blend in. While everyone masks sometimes, Autistic masking is a disconnection from self. It requires us to ignore signals from our nervous system, leaving us profoundly exhausted. To not call attention to ourselves, we spend a lot of mental energy controlling our bodies. Situations with stricter behavioral expectations require more work and hide more of who we are.

While autistics are often characterized as rigid, I became a chameleon. I became able to adapt to a wide variety of people and environments. I learned to mimic others’ behaviors and collected canned responses for frequent situations. I have strategies that reduce surprises and help me understand expectations in advance. I research and rehearse - what to say, how to act, what to wear – before most interactions with other people. The internet is great for providing answers to questions that I’m too embarrassed to ask, even if it leaves a hilarious search history.

Masking enabled me to gain access to parts of society that wouldn’t have been open to me without it. That access, however, often came with a feeling that I didn’t belong. A sense of belonging occurs when people are accepted for their authentic self. I often wonder if connections to others are genuine. Would people still accept me if they saw all of me? Even though masking contributed significantly to my burnout and being in burnout made it harder to mask, I still find myself masking. Unmasking is a process of learning how to live authentically.

Online communities

Like many neurodivergents, I dove into research and online communities. Most of the research didn’t apply to me. It was either focused on children or curing autism. But within the online communities I found my people. Interacting with others like me allowed to begin building a sense of self-independence from the masks I’ve worn.

The stories and the struggles of my fellow autistic and ADHD peers reflected my inner world in ways I never imagined possible. I giggled out loud when I found out seeing music as an interpretive art display was called chromesthesia and that lots of autists are synesthetes. I grieved when I read threads of challenges with friends, coworkers, and bosses due to mismatched communication. I was horrified to learn that I held some deeply embedded ableist ideas. I fumed when I learned autists have a cluster of common health conditions that explain symptoms I’ve had for years. Symptoms that have been dismissed by doctors and loved ones. I rolled with laughter because autistic humor is hilarious if not a little dark. I celebrated every new diagnosis announcement with a “congrats on the autism” cake image because I understand the power of discovering who you are.

Online communities also gave me the courage to get engaged in real-life neurodivergent spaces. The neurodivergent community is profoundly accepting, with or without a diagnosis. In these spaces, we are building neurodivergent culture.

Identity vs. disability

I identify as an AuDHD woman. It explains who I am and how I show up in the world. Every part of my existence is filtered through AuDHD neurology. Being AuDHD doesn’t mean I can’t. It means that when I do, it might look different. I can’t remove my AuDHD parts or untangle which parts are autistic and which parts are ADHD. I like how my brain works and can’t imagine who I would be if I wasn’t AuDHD.

Liking who I am, however, doesn’t mean that I’m not disabled. Post-burnout, my AuDHD traits have grown more pronounced, and years of masking have had a negative cumulative impact on my physical health. I now experience verbal shutdowns where speaking feels like I am manually pushing words out of my mouth. My ability to tolerate noise or differentiate between background noise and speech is greatly diminished. I don’t enjoy being in crowds or eating in restaurants the way I used to. I can no longer wear clothes that don’t meet my sensory needs. Managing energy expenditures and sensory inputs have changed how I live. By accommodating myself and learning to set boundaries, I’m moving closer to living authentically.

Through this journey, I have finally achieved my goal of growing up to be normal. I’m AuDHD normal.