Sleep & Autism

@bria, I'm hopeful that you will get helpful answers and strategies at your upcoming appointment at Mayo Clinic.
His frequent night episodes must be very tiring for him and for the whole family, and interrupted sleep makes daytime parenting a real challenge. I can imagine you're pulling out all your reserves.

I'm tagging fellow members @keeg1010 @linh @roohsharma @almi319 @keely21 @gingerw and @auntieoakley, who may have some thoughts to share as you prepare for your upcoming appointments, tips or simply what question you may wish to ask the experts.

Bria, you mention that during these episodes he "is responsive but any intervention we've attempted makes everything exponentially worse." Would you mind sharing what you've tried and how the episodes find an end eventually?

Thank you Colleen. Interventions we've tried is rubbing his back, scheduled awakenings, weighted blankets, melatonin, magnesium, lullabies (us and a sound machine), turning lights on, adjusting temperature, textures of linens and jammies, soothing voices, trying to wake him up...
It sounds like he is being tortured and he's pissed about it. He rages until he stops, often he passes gas at the end. Which we've seen GI thinking maybe it's gas related. He struggles with introception (difficulty recognizing what's happening within his body) so he's never been able to verbalize if it's pain driven, scared, dreams... and this has been continuous since infancy.

By responsive I mean that he will yell, hiss, spit, hit, kick, throw stuff at us... aimed at us. Eyes open and all. But never seems to remember any of it but says he's "scared of the night".

I just want to go in and comfort my kid but instead we've been told to "not give it any attention". So we wait it out with it being video recorded hoping it doesn't wake our daughter in the other room and scare her.

Birds singing upset my sibling's autistic son the most. So his parents had his bedroom professionally sound proofed. He wore noise cancelling headphones often during the day. He has always been on a special diet. His parents went to great expense treating his agitation, etc. with homeopathic medicine. These were/are flown in from Hawaii (very costly I heard). This was of course in addition to his being followed by a pedestrian.

In addition his mother travelled to national autism conferences (they may well be on Zoom now), networked and I'm sure picked up pointers along the way. The family use to live in the S.F. South Bay and were able to connect with other parents in that area with autistic children for support.

I watched this from the outside but have tried elimination diets myself. Perhaps that might be of help in assessing what could be disturbing his system. Sorry I can't speak directly to your son's night episodes.

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

If it's from 3-5am it could be medical. Many of us have MCAS (google search) and he could be have histamine (or cortisol) dumps.
If GI didn't help, may and allergist.
Also many have a reversed sleep cycle. Naturally sleep better during the day then at night.
Many have lifetime of sleep issues.