A Mask They Put On: The Rhythm
One of five in a series for the undiagnosed neurodivergent child who survived
You’ve just discovered you’re autistic—or finally received a diagnosis after years of wondering. Maybe ADHD is part of your story too. And now you’re looking back on your life with fresh eyes, asking: What happened to me? What could have been different if someone had known?
This five-part series, A Mask They Put On, explores the lived experience of growing up with generational trauma as an undiagnosed autistic child with ADHD. It’s a story of survival, of misinterpretation, and of reclaiming self-understanding and compassion.
I’m a late-diagnosed autistic adult myself. I write this series for people like me, newly diagnosed autistic adults, who are piecing together a lifetime of being “othered,” masked, and misunderstood.
Over five posts, I’ll tell stories of my childhood—not as pathologies, but as evidence of the brilliance, resilience, and sensitivity that went unseen. I’ll view my younger selves not as broken or problematic, but as heroes who adapted in a world that didn’t make space for us.
[A Mask They Put On: The Rhythm]
Fainting results in a jarring awakening. It’s scary and confusing. Your mind races. What just happened? How did I get here? My eyes shifted skyward, then to the trees, settling on the snow. To rest in the snowy meadow proved a sound choice. At first, I regretted walking to the doctor’s office through a neighbor’s backyard. My appointment started without me, and I figured I might arrive earlier using a shortcut. If the snow hadn’t been so high, I could have managed. The extra energy I needed to push through drained my battery sooner than expected. My mind then raced to the thought of fainting on Main Street. How embarrassing that would have been. I made the right choice.
After a couple of breaths, I stood up, brushed myself off, and continued in the snow to the back-side of the town medical office parking lot, next to a dentist’s office. I learned all about shortcuts in this part of the village when I had a short-lived paper route in the area. It proved disastrous. I had trouble managing money and spent it at the local candy store, the Newsrack, right away. After knocking off the snow from my pants and boots in the parking lot, I entered the doctor’s office and checked in.
I hoped for the best. When my levels returned to normal, I could return to school. While I enjoyed the break from my studies and the accompanying stress, I hated being stuck at home. I was ready to go back. I also worried the school musical’s casting took place, and my absence might prevent securing my desired role, or a role at all. Infrequent shows every two years made this timeframe crucial.
The period before January 1990 proved difficult. At fourteen, I had been an orphan for just under a year. My grandmother died in our dining room the January before. Then, in a dramatic one-two-punch, my dad died of cancer in the living room the following March. The months leading up to both deaths involved living in a hospice program. My involvement encompassed physically supportive tasks such as assisting with sponge baths and emotionally supportive tasks such as whispering it was alright to die and I was well cared for each time I left the house. I learned about the wonders of dry shampoo and how dying people’s brains work simultaneously. Their funerals were two months apart and similar: similar people, identical funeral home, and identical metal baby-blue caskets. A lot of it blurred together.
To check out a list of my series with descriptions and links, click below.
My mother had Amyotrophic Lateral Sclerosis (ALS) and relinquished my custody when she moved to a government nursing facility when I was eight. My aunt (from my mother’s side) and uncle (from my father’s side) took legal responsibility for my care, serving as my guardians until I turned 18. They each lived several hours away with their own families while I lived in the old, drafty house my parents bought in the village. I lived there with my sister, two years older than me, and a woman named Nancy, who had been working with our family and living in our house since 1980. My brother was completing his second year of college. Nancy ran a successful daycare in our house and couldn’t drive me to my bloodwork appointment, so I walked myself. I was used to being self-reliant.
Life after my father’s death had an unsustainable rhythm. On school days, I got up, passed other people’s kids eating breakfast at my kitchen table, ate alone in the family room, and then walked to school. The family room, once my parent’s bedroom, had a door for privacy, a sofa, recliners, and a TV. When school finished, I returned home, closing the family room door behind me, dining and watching TV alone until bed. My weekends consisted of watching TV, eating, and attending church youth group on Sundays. School acquaintances outnumbered close friendships. For the rest of 8th grade after my father’s funeral, I kept busy co-editing the middle school yearbook and throwing the discus and shotput, unsuccessfully, on the junior high track team.
The summer involved a team effort “keeping me busy” as much as possible. I spent two weeks at Masonic summer camp, thanks to the generosity of a neighbor down the street who became the state’s Grand Master. While there, I engaged in an activity where, during free swim, my cabin swam to the floating dock and mooned those on the shore, shocking visitors from the state Masonic retirement home. The situation proved quite scandalous.
After that, I spent several weeks in Rochester with my aunt and uncle, volunteering full time as a staffer for the mayor’s reelection campaign thanks to their political connections. I got to live my adult fantasies like working phone banks, installing lawn signs, supporting campaign events, and crisscrossing the downtown streets between the campaign office, county office building, city hall, and the post office- sometimes on my own. While my aunt drove me to work and back most days, I sometimes completed my “Working Girl” fantasy by taking the bus home alone, in my sneakers.
September rolled around, and my freshman year began back in Marcellus. It proved difficult. I had many adjustments to make and no summer diversions to distract me. Significant life challenges faced me as I adjusted to a new school. I was also a kid experiencing complex trauma with undiagnosed autism and ADHD.
To avoid spending time at home during daycare hours, I took part in many after-school clubs, aiming for more yearbook photos than my sister. I took a typical New York State Regents Diploma schedule: French, earth science, math, English, social studies, choir, and gym. All of my teachers worked with my father in some capacity during his career as a teacher in the district. He was an active member of the town teachers’ union and taught at the high school before moving to a position at the middle school. During my early childhood, my ninth-grade earth science teacher, a close family friend, lived with us along with his wife and two children for a few years to assist us and cut costs. Outside of school, I referred to him as my uncle. On paper, my uncle/science teacher and the rest represented a “dream team” of adult educators, vested in helping the child of one of their own when he needed it most. My father designed it that way.
My father exemplified an upstanding community man like his father before him. To supplement our family’s income, he drove school buses, ran a chimney-sweeping business, and painted houses with other teachers each summer. He organized food drives, ushered at church, and remained an active Mason. He invested in the community, and the community invested in his family when we needed it most. It literally took a village to keep us going. When my mother started using a wheelchair, they rallied to purchase a van. On weekends, when Nancy took time off, they brought us casseroles. They provided transportation for me and my siblings to school and church events when others were unavailable. The community even organized a charity basketball game in the high school gym to raise money for my family after his diagnosis. Every church bulletin, newsletter, and local article about our situation emphasized the community’s robust support.
Adults involved acted with good intentions. Their participation allowed them access to my life and, as a result, an opinion about it. As a young child, I had no other experience than accepting adults’ opinions about my behavior whenever and however they offered them, often in public. Adults, sometimes with their kids (my peers) in tow, would stop me in the library or in the grocery store to inquire about the results of whatever activity they supported me with. They often reminded me of my fortune in having such a supportive community and how grateful I should be. Adults varied on gratitude’s definition and how best to express it. My task involved giving them the appreciation they desired. Despite implying the opposite, I quickly discovered their efforts weren’t for free.
Little did I know, waking up the meadow that day, my body was paying the price.
What rhythms did you experience as an undiagnosed neurodivergent kid? Were they sustainable? How did they impact your life then? Now?
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