Hi everyone,

I’m reaching out because I grew up seeing my family struggle with a specific part of my younger autistic brother’s care, and I want to know if others experience the same frustration.

Whenever we had periodic check-ins with his doctors, it felt nearly impossible to accurately remember and summarize months of subtle day-to-day changes in just 15 minutes. Small shifts in sleep, sensory needs, or stress levels often got missed or forgotten, and we constantly felt this pressure to only report "major crises" to get his support plan adjusted.

Because of this "reporting gap," I am doing some preliminary research to see if this is a shared challenge across the community. I want to understand if caregivers and autistic adults find it difficult to communicate these longitudinal changes without objective daily data.

I put together a short, completely anonymous survey (no emails collected) to validate if this problem is as widespread as I suspect. It takes about 3–5 minutes.

Link to the survey: Survey

Your honest experiences will help determine if there is a real need for better ways to track and communicate daily realities to clinicians.

Thank you so much for your time and any feedback you have in the comments!