My spouse Mike and I may have been autistic together. Perhaps that was why we were drawn to each other during my inaugural college year. I was a bright-eyed seventeen-year-old, and he was an intense and seasoned twenty-something university student, driven to sling code and design all kinds of inventions. His near fall over my outstretched legs led to our initial conversation, as his focus was on the completion of a project and not on navigating the crowded hallway in which I sat against the wall, waiting for my class to begin.
His computer science passion turned into an intrigue with me, and led to the first of what I would learn were his many questions. A ski trip he proposed was something I considered briefly and chose to avoid, as I was not confident enough to try such an adventure. Mixed feelings bubbled in my consciousness during the crisp, golden-leafed days of the opening fall semester, my first college year.
What did connect us a few months later was our shared love of words. As a hyper-sensitive child, books were reliable friends and deep interests. This passion was unrecognized as an autistic trait because I was labeled a “girl.” My fascination with anything in print led to multiple library trips at an early age. My small childhood home was a treasure trove of books that I loved to hold even before I could understand what they said.
I was excited about our first date, which was an all-night meeting at the off-campus house he shared with a then-absent roommate. I was also confused about social expectations. For most of my youth, the world of romantic relationships held little interest. I found the ritualistic elements of dating tiresome—until I was on my own, away from the concerns my parents had for me as an only child.
I grew up a city kid, used to bright lights, vacant lots, empty-building mysteries, and treasures discovered in rock-strewn Milwaukee alleys. He was born and raised in a one-stoplight Wisconsin town and was very much a “cat person.” My love for dogs and wild animals led me to enroll in a week-long, summer pre-college program with a focus on animal-based careers. He was an “original,” just like the poetry he wrote and read during that eternal span of darkness that was our first get-together. His verses were a cloak of protection, blanketing us in the novelty of each other and shared language. To him, people were mysteries, and the reason he majored in psychology as well as computer science.
Words were never an enigma to me. He and I pondered them in multiple settings—at the local park in our college town, where we cautiously crept on slick rocks surrounded by a small stream, to find the perfect sitting stone on which to read to each other—and during road trips, where he delved into the precision behind terms that were important to him. In later years when we shared a home, we played word games and read books together at night, huddled in the buff-colored electric blanket that I reluctantly agreed to purchase due to fear of it starting a fire. Today I am grateful not only for that bedcover’s warmth but also for the memories it holds, of his warm hand in mine and of our cocoon of comfort as we huddled together under it during a midnight storm.
Our early relationship grew through many joint study sessions, snowy trips to class in his old Toyota Celica, and chores shared in the various apartments he rented after he moved from the gabled Victorian where I first knew the depth of his words. During that time, I learned that I had dyscalculia—a math-based learning disability that explained all the years of frustration around numbers. This discovery forced me to re-think my college plan several times and ultimately led to dual majors in Sociology and Spanish. If words were my easy companions, numbers were prickly puzzles, always ready to confound and embarrass. To him, numbers were as reflexive as breathing. This dichotomy led to classic household-duties separation years later, before the illness that shattered everything.
Even though the autism that was undiagnosed for much of my life often forced me to plow forward while feeling utterly lost, nothing prepared me for Mike’s terminal brain cancer diagnosis. After twenty-seven years of shared travel, multiple beloved Rottweilers and a Black Lab around whom we planned our first home purchase, and the simple joy of discovering new restaurants, our journey took an unfathomable turn. The first medical scan sent me crashing to the depths of my soul–where I found resolve forged through the mystery of my own neurodivergent being.
At home alone, I spent hours looking online, a deep dive into the world of his cancer and any kind of assistance available to me. I started with notebooks–reams of notes about mutual aid, financial assistance, peer support, patient studies and reminders about multiple appointments and next steps. I also made sure to list the names of people with whom I spoke and what they suggested to me, as well as if or when we would next make contact. I had to learn to manage the multiple mysteries of household ownership–the washing machine that stopped spinning; the thunderous dryer noise; the large fenced-in yard that required mowing. These were all chores that he handled in a meticulous instant. To me, they were conundrums of overwhelm and tinged with sorrow.
The day before he passed, bulbs flickered off and on in his hospice room; the sensitivity that had always been my body’s silent siren, flashed as if following the lights. I stayed with him as his breath changed, slowed and then went out—a calm, final exhale. There was a sense of peace in the room that belied my internal chaos and pulled at my broken edges.
I was not unfamiliar with the discord of a frayed self. Autistic affirmation in my early fifties meant that I had a lifetime of piecing together things assumed to be understood. The “me” that was unrecognized for so long led not only to the formation of deep internal fortitude but to instinctual self-care. This ability to armor oneself with personal sustenance provided protection from crushing soul annihilation, and enabled me to accompany him to multiple radiation treatments and find lost hearing aids in his nursing home room for the hundredth time. I blocked my confusion to help him through his; I bolstered my mettle when his tears flowed over the loss of identity that was his job. Courage borne of pushing through, even when one is not sure of the destination.
A particular kind of grief follows me now that I am on a solitary path, a sorrow as spiky as my neurotype. It hides in the corners of my mind, perhaps as camouflage in a meltdown over a shattered kitchen light, or in the autistic inertia of an unmet deadline. It settles in the bottom of the heart-etched and multi-hued Penzy’s cup he gave to me, and the thick creases of his bed pillow, still resting next to mine. At times I am unsure if my grief-wrestling is due to the vagaries of delayed autistic processing or to the classic trauma of loss.
Though the possibility of autism in my spouse was unknown throughout his life, his devotion remains visible in the cherished display of dog photos and canine sports titles he framed for me, and the warmth of a soft cream blanket on my bed. I rise each day and walk into the kitchen, always aware of one of my favorite photos atop our once-shared table. In the picture, he and an instructor are sitting across from each other, both holding an electric guitar (music was another one of Mike’s passions). I can imagine the joy he felt as he freed the strings, and beheld their power. His intense desire to know as much as he could about his world through examining different activities was one of the first things I discovered about him. It provided me with an example from which to start learning about myself.
While I wish Mike and I could have recognized the unique complexity of our potentially shared neurodivergence, I know that what we did have was an amazing journey that enriched and changed both of us. Grief too, changes a person, especially the intricate and knotty heartache that lives through an autistic lens. It is a particular kind of sorrow, born from a lifetime of experiences for which I had no name as well as the complexities of love lost.
Power and pain are dual purveyors of a new path, for autism taught me that strength resides in both. The only way through is the route forward. I hold as fast to that as I do Mike’s favorite sweatshirt nestled in my bed, a smokey grey hoodie with a colorful pinball graphic on the front. Thick and soft, it provides rich sensory memory and deep comfort, as I stare at the night sky and remember the time that once was.
