I’ve taken some time to process my recent diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS), and as I start the journey of seeing different specialists, I want to share more about what that looks like—especially as someone who is also autistic. My hope is to model and talk about ways we, as patients with autism, can advocate for ourselves in complex medical situations.
One of the most challenging symptoms I’m working to manage at home (while waiting to see a specialist) is dysautonomia. I’ll link to the Ehlers-Danlos Society’s explanation at the end, since they cover the medical details much better than I can. But for me, dysautonomia means my central nervous system doesn’t always communicate well with my organs. It’s a dysfunction with many faces, and I experience a whole range of them.
Today, though, I want to focus on one particular struggle: my inability to regulate my body temperature enough to fall asleep and stay asleep comfortably. It’s a deceptively small issue, but for me, it has a huge impact on daily life.
I remember complaining to my mom that I was always hot as a child. She tried to help by putting a fan in my bedroom during the summer, but it never really solved the problem. I was still constantly struggling with feeling too warm, especially at night.
Over the years, I’ve experimented with different types of blankets, searching for something that wouldn’t make me feel overheated but also wouldn’t trigger a texture aversion. This has always been tricky for me: the material of the blanket matters just as much as the weight and warmth. Most nights, I’d start out on top of the blanket, only to feel cold after a while and get underneath. Then, inevitably, I’d become too hot again and end up tossing the blanket off, repeating this cycle over and over until morning. The result? I’d wake up feeling exhausted, as though I hadn’t slept at all.
It wasn’t just physically exhausting—it was emotionally draining, too. In high school, I’d try to sleep in on weekends to catch up, only to be woken up by a concerned parent who thought I was “oversleeping.” The reality was, I had nowhere to go and nothing pressing to do, but I was still exhausted throughout the day. It was frustrating, feeling like my need for extra rest was misunderstood or dismissed, when in reality I was just trying to cope with something I didn’t have a name for yet.
After finally getting my diagnosis and learning that dysautonomia can affect my body’s ability to regulate temperature, so many pieces started falling into place. That’s when I began researching blankets and sleep solutions that might actually help me manage my symptoms and get the restful sleep I’ve been missing for so long.
After some research, I decided to try a waffle-style blanket. The texture was promising—it looked breathable, and the weave seemed like it might help with temperature regulation while hopefully being soft enough to avoid triggering my texture sensitivities. I crossed my fingers and placed the order, hoping this would be the solution I’d been searching for.
It finally arrived, and I’ll admit—I was nervous opening the package. I really wanted this blanket to be a good solution, but after so many disappointments in the past, I was bracing myself. The moment I touched it, I could tell that, at least from a sensory perspective, I was safe. The texture was soft and non-irritating, and I didn’t feel that immediate “nope” reaction that’s happened with so many other fabrics.
But the real test would be sleeping under it. Last night was the first time I used the waffle blanket for bed, and honestly, I could have cried when I woke up this morning. For once, I hadn’t spent the whole night tossing and turning, overheating, or waking up shivering. I only woke up once during the night to switch positions—a huge improvement for me. I didn’t know something so simple could make such a significant difference. I actually felt rested—like I’d finally experienced what real sleep could be.
As I learn to take better care of myself with this diagnosis, I’m continually surprised by how much of a difference the smallest adjustments can make. Sometimes, it’s as simple as switching to a different blanket or adding the right vitamins to my routine. These changes might seem minor, but they add up to a much better quality of life. I’m realizing that self-care isn’t always about big gestures—it’s also about paying attention to what your body needs and being open to trying new solutions, no matter how small they seem.
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