Creating a Video Library for Future Caregivers of the Profoundly Autistic

This photo was captured at our nearby park - December 2025

For parents and lifelong caregivers of profoundly autistic individuals, there is a difficult reality we eventually have to face. We will not always be here. At some point, someone else will become responsible for the care of the person we have spent years learning to understand. We can leave behind medical records, written care plans, lists of medications, routines, and detailed instructions, and all of those things are important, but they cannot capture everything. So much of what we know as caregivers has come from years of observing behaviors. In caring for Linda, I document those behaviors alongside medications, food and water intake, and other factors that may affect her. Then I closely watch for patterns. I believe this is invaluable information when caring for someone who is nonverbal, like my daughter.

This is what led me to begin creating instructional videos as part of my What to Do for Linda When I’m Gone series. My goal is to build a visual library that can help future caregivers better understand Linda and recognize what they may be seeing in real time. A video can show what pain, distress, frustration, or escalation actually looks like in a way written instructions simply cannot. It can also show how I respond, what seems to help or what may make things worse. These videos derive from years of paying attention to my daughter’s behaviors. I share these videos publicly as well, in hopes that other parents and caregivers may learn from them and consider creating something similar for their own loved ones. Because the videos are instructional, my voiceover narration is often intentionally calm, controlled, and informational so the message is clear and easy to understand.

Years of caregiving knowledge should not simply disappear when the primary caregiver is no longer there. Creating a video library is one way of passing some of that knowledge forward and giving future caregivers a clearer understanding of the person they will one day be caring for. No video collection can replace the years of experience that come from knowing someone so intimately, but it can leave behind valuable pieces of that understanding. I believe other parents and caregivers of profoundly autistic individuals may want to consider creating their own visual record as part of preparing for the future.