I talked to my brother about this at dinner tonight, and he laughed and said “why do you think you slept in an interior room that was essentially a giant closet. The small size of the room and the soundproofing made it so I would sleep and not wake in a panic. There was a nightlight up high so I couldn’t run into it. I remember my mom always used pink lights in it. My room was a thick mattress on the floor, and shelves above. I know of other autistic adults who slept in very small rooms as children and one who does it as an adult.
I am glad you are going to Mayo, I cannot imagine how challenging autism and epilepsy would be.
Is this a very regular event at your house? Is the frequency increasing or decreasing?

@bria Oh, gosh, I can only imagine you wanting so much to comfort and being told to "stay away"! It's human nature to nurture, isn't it? You have tried weighted blankets, I wonder about a sleeping bag situation where your son is encompassed fully, or if you ever took the chance to wrap him in a blanket and simply hold him? Play on your mother's intuition. Wrapped in a blanket, feeling safe, perhaps your voice quietly humming, would be a key to helping him? For me, coccooned like a burrito, not necessarily the warmth as much as the feeling of wrapped up has been key for a decent sleep. Add in my cat who knows when to plant herself on my legs as an added support and touchstone.

When your son says he is scared of the night, has he ever been able to verbalize, or draw a picture of what it is that makes him scared? His fright may be because he has these episodes that overwhelm his entire system, and he is fearful of that. Is there a fragrance that calms him? Lavender, chamomile, fresh cut grass, pumpkin pie, pine trees, or somesuch that might be of help? Does he have a stuffed animal that he can talk to/hold? What happens if you put photoflourescent stars on the ceiling of his room, that appear at night in the dark? [Do research and re-create constellations!] Is there anything audible that calms him? I have a CD called Evening Rapture, full of crickets, owls and birds, that relaxes me into slumber no matter the stresses. Something to distract the sense of panic he feels, by using other senses.

What just came to me also is if looking into alternative resources like acupuncture or hypnotherapy might be of benefit. You're not looking to "get rid" of an autism diagnosis, you want to explore how he can be best relieved of what is a big negative. Does he ever have these episodes during the day when he takes a nap? Might things be related to the darkness of a room?

So many thoughts, so many questions, so much heartache for you! Please know I am reaching out and giving you a big hug for wanting the best for him and your whole family!
Ginger