How I Came to Appreciate the Video Memories I Experience as an Autistic Woman

I’ve replayed the video memory of my grandpa and dad holding their duffle bags on the landing at the bottom of my childhood home’s basement stairs hundreds of times. “Wait!” I yell down the steps. My grandpa, with his perfectly parted grayish-white hair, and my dad, with his curly, unruly brown hair like mine, both look up at me with their Irish eyes smiling and wave goodbye. They are heading to a Canadian wilderness lodge on an island in the French River, a father-son fishing trip from which my grandpa will not return alive.

The grief I felt from my grandpa’s loss twenty-six years ago is still with me, as though he just passed away. I know he is no longer living and that the event happened when I was fourteen, but I don’t experience the passage of time the way most people do. Most of how I experience the world is different. As a selectively mute child, I always knew that I wasn’t like other kids my age, but I didn’t know I was autistic until I was diagnosed in my late thirties.

In her book Thinking in Pictures, Temple Grandin, an autistic woman and internationally known advocate for the autistic community, describes how her memories are stored like videos in a library: “I create new images all the time by taking many little parts of images I have in the video library in my imagination and piecing them together.” She writes that these video memories help her make sense of new experiences: “every experience builds on the visual memories I carry from prior experience, and in this way, my world continues to grow.”

Like Grandin, I replay videos in my imagination, and they help me make sense of my world. I don’t know what it’s like not to be autistic, or how to recall an event without retrieving a clear, video-like memory. After my grandpa’s death, every time I looked down from the top of those basement stairs in my childhood home, I replayed the video memory of my grandpa leaving with my dad on that fishing trip. I could stop the video by focusing my attention on something else, but most of the time I wanted to relive that scene, if only for a few moments. I can see the same vivid scene every time I try to recall it, as though I’m still standing in the place where it happened.

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While I consider the vivid personal memories that make up my video library to be one of my strengths, most of the research on autism and long-term memory suggests that autistic people have trouble recalling personal experiences. These results may be misleading, though, if we consider the findings of two recent studies. A 2014 study that investigated the gender differences with autism found that while autistic boys had trouble recalling personal memories compared to neurotypical boys, both autistic girls and neurotypical girls had stronger autobiographical memory than neurotypical boys. A 2016 study found that when autistic people self-reported their personal memories online, they did not have impaired autobiographical memory but rather enhanced personal memories, remembering events from an earlier age in childhood and recalling more sensory details from those events than did neurotypical people.

I always knew that I wasn’t like other kids, but I didn’t know I was autistic until I was diagnosed in my late thirties.

My memory of the first time my grandpa and dad took my younger brother Brian and me fishing at Emmerling Community Park could have happened last week. I still remember the smell of the damp mud in the woods near the stream. I was chasing Brian, and my grandfather was chasing us. I can hear the concern in our grandpa’s voice when he called out to stop us, and I looked back to see him gasping for breath. When I caught up to Brian, I told him we should wait for Grandpa to catch up. “We’re sorry,” I said to him, once he caught up. “You don’t have to apologize,” he said. Brian and I continued misbehaving as we always did, but my dad and grandpa had endless patience for us to become indoctrinated in the family fishing tradition. My brother and I watched in awe as their experienced hands, covered in worm guts, effortlessly baited hooks.

Years later, during their father-son fishing trip, my grandpa had a heart attack and my dad tried unsuccessfully to revive him with CPR. The pharmacist who had filled my grandpa’s prescription for heart medication had given him the wrong pills. While taking the wrong pills probably did him no further harm, not having the right pills was too much for his heart to endure. My dad was in an ambulance with my grandpa en route to the hospital when the engine began to smoke and eventually caught on fire. My dad escaped from the ambulance, along with the paramedics and my grandpa on a stretcher, only minutes before it exploded. I knew I was lucky I didn’t lose my dad, too.

As a teenager, I hid, even from myself, how I felt about my grandpa’s death. I remember my dad calling home from Canada to tell my grandma and my mom what had happened. “What am I going to do?” my grandma asked me, as she collapsed into my arms, crying. I didn’t have a response, and I didn’t cry. “Grandpa had the time of his life catching fish in the French River,” my dad said to me when he returned. His voice cracked and tears formed in his eyes, but I didn’t cry then, either. I didn’t cry at my grandpa’s funeral, even when I knelt in front of his coffin reciting one of our favorite Irish blessings: “May the road rise to meet you.” I knew that if I let myself cry, the grief would consume me, so I saved my tears for when I was alone. That night, I cried when I pressed a red rose from his funeral in a large encyclopedia, a keepsake I would hold to for many years.

There is a perpetual stereotype that autistic people lack empathy, but in my experience, this couldn’t be further from the truth. When it comes to the few people in my life that I’ve been really close to—like the grandfather, who was like a second father to me—I have so much empathy that it can result in sensory overload. Taken to the extreme, I might have an autistic meltdown, an explosive burst of emotions and impulsive behavior usually leading to an uncontrollable crying fit.

Over the years, I’ve learned to use a scripted response when a friend or acquaintance has a death in her family: “I’m sorry for your loss. My best wishes to you and your family.” I imitate these words, processing the situation in a logical way. It’s how I protect myself from sensory overload. What may appear to some as a lack of empathy is actually an excess of it.

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Ten years after my grandpa passed away, I wrote a personal essay that included the events of the tragic fishing trip for a creative writing seminar in graduate school. Though I had written personal essays in high school and college, this seminar was my first creative writing course. It was technically a fiction course, but I had a hard time writing a story that wasn’t true. The scripts of video memories from actual events in my life were the only words I knew how to write in those early days of my writing career, so I wrote my story exactly the way it happened.

When I was unexpectedly asked to read my piece in class one day, I agreed to do it because I wanted to share. But I wasn’t able to hold back my tears this time. Reading the words I wrote and hearing the emotional responses of my classmates put me into sensory overload, and caused what I now know is an autistic meltdown. After I read a few pages, the video memories playing in my head started to overwhelm me, and I couldn’t continue. I asked a classmate sitting next to me to finish reading for me, and left the room.

There is a stereotype that autistic people lack empathy, but in my experience, this couldn’t be further from the truth. 

I lost the only copy I had of my unpublished personal essay about my grandpa during an international move. At the time, I was extremely upset with myself for being careless with a piece that meant so much to me. But then I realized that all I had lost were words on the page. The real journey was getting to the point where I could tell the story in the first place. Now, fifteen years after writing that first essay, I am writing this one by retrieving the same video memories I used to construct the story the first time. My narration of these video memories is different this time, because now I’m aware of how my autistic lens affected my experiences.

When I told my dad I wanted to write about my grandpa in a recent phone conversation, he described in vivid detail what happened on their last fishing trip. He corroborated all of the details I remembered from when I was fourteen, but also added details I hadn’t heard before. So, twenty-six years after my grandpa’s death, I finally heard the whole story. I don’t think I was ready to ask questions about my grandpa’s death until I understood why hearing the answers would be so difficult for me. Being diagnosed with autism as an adult gave me a newfound courage to risk sensory overload by confronting dormant emotions, even if it meant replaying the tragic scenes from the part of my video memory library I sometimes want to forget.

While listening to my dad recount what happened, I created new filmographic memories to fill in the missing links of the events recorded by my younger self. Even though I don’t have a good sense of time, I know exactly which parts of my grandpa’s story came from what I learned as a teenager and which are from the more recent conversation with my dad. The video memory of me talking to my dad on the phone is even part of those newer memories, the video cutting back and forth between the scenes on the fishing trip and me writing notes during our conversation. I don’t actually need the notes to remember, but the act of writing words on the page helps me to process the information; I like to see the script while the memories play in my head.

I saw my grandpa telling my dad on their drive, “I shouldn’t have left your mother,” because she needed him to help her fight her battle with liver cancer. I could picture my grandpa kneeling down at his bedside to pray, a nightly ritual he carried out even at the cabin on the island. I saw the fog that was too heavy for a helicopter to land on the island to take my grandpa to the hospital after his heart attack. I could imagine the motorboat the lodge owner drove with my dad and grandpa in it, hugging the shore to take them eight miles down the river to meet the ambulance.

After the first ambulance exploded, the other paramedics who arrived at the scene wouldn’t let my dad go in the second ambulance with my grandpa. I can picture the nurse handing my dad the empty wallet she found under my grandpa’s body at the hospital. He had been carrying a few hundred dollars to pay for his fishing trip, which would have been a lot of money for him, a retired Pittsburgh steel mill worker. “I always said that I would go back and confront them,” my dad said to me on the phone, meaning the paramedics he presumes robbed my grandpa. I can still hear the anger in his voice when I replay this memory, although these videos of scenes I didn’t actually witness are incomplete and fragmented, lacking the vivid sensory details of my own lived experiences.

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My video memories of important life events replay in my imagination with the same vivid sensory details they had when I first experienced them. Having a very good long-term memory sometimes makes me feel like I’m living in the past, because my new experiences are often filtered through what I remember from past events.

Long before my autism diagnosis, I had learned how to distract myself from repeatedly recalling painful memories to avoid the overwhelming emotions that threatened to impose on my day-to-day life. I find it easier to access my video memories now than I did when I was a teenager, though, because knowing and understanding that I’m autistic has given me the strength to let myself experience the excess of empathy that comes from reliving these moments.

The way I experience the passage of time means that I am always only a video memory away from sensory overload as I grieve for my grandpa. But knowing my grandpa died doing what he loved gives me comfort. I picture him with my dad on the French River in a fishing boat. As my dad told the story, my grandpa was reeling in a foot-long bass when a thirty-inch Northern Pike came out of nowhere and ate the bass, so my grandpa ended up catching the big fish instead. But then my dad said he couldn’t remember for sure if it was my grandpa or him who actually caught the fish. My dad remembers getting the fishing net out, so he thinks it must’ve been my grandpa. 

Understanding that I’m autistic has given me the strength to let myself experience the excess of empathy that comes from reliving vivid video memories.

My video memory library doesn’t know what to do with this uncertainty, how to store this memory. I want a more complete version of the story—I want to know who really caught that fish. I want to know what the air smelled like in the fishing boat on the French River. I want to know if there were strong winds blowing in the trees on shore. I want to know what the fishing boat looked like, what my grandpa was wearing.

I’m grateful that my decades-old video memories allow me to keep my grandpa alive in my imagination. Having these vivid memories can make it hard to cope with the grief from his death, which I’ve carried with me since I was a teenager. But I am able to find joy in watching my grandfather’s fishing legacy live on. My brother Brian and I both have kids of our own now, and the fourth generation has taken up their rods.

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