Sleep & Autism: son suffers from night episodes: What helps?

@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.

Yes my son slept in our walk in closet for many years so we could be near him for seizures or if he wandered out. We wrapped blankets across the rungs to kind of look tented with low ceiling. Just a mattress on the floor with pillows and like a fabric over the window and tons of stuff animals and ceiling to block out lights. Side table for his heart and oxygen monitor and cpap machine and so clean 2. Cozy cocoon for him. Loved it. Now he has his own room and cozy up in a sleeping bag every night.

My other son with asd sleeps under a captains bed with a long side table under as well . So another small space.

Hello , I'm Anna , My youngest daughter has 5 children, she's 30yrs old, her son ( Leelynn) my grandson is so smart, loves dinosaurs and watching cartoons and other programs on cellphone, he is 10yrs old, my daughter had another baby she is also autistic, The doctors said that it was very rare to have 2- Autistic children back to back,.. well, obviously not that rare... Leelynn & Gracey is 8yrs old, anyways my G-son has the worst autism, while Gracey has certain things she has to do like putting her arms straight in front of her and it looks like she is trying to start a motorcycle with her fists but then throws her legs out one at a time. My daughter has her hands, feet, mind, & legs full every single day and night cuz austic children don't sit down & have nap time, or quiet time, they literally have time & more time all morning, noon, night, Leelynn goes to sleep for not more than a few hours a night & right back up at 5 am sharp & wants his phone to watch his favorite shows, well, anyways, he has been having a lot more meltdowns than ever before, poor guy... He is strong and only has gotten a lot stronger and my daughter has said that she can literally feel his anger, force, and strength just within 2 mins of his meltdowns, he doesn't want to be touched, like if you try to hug him he's some what okay, depending on how long that hug is, Gracey has no problems at all with Hugs, she has tantrums to, but, Leelynns are far more intense than Graceys, , anyways, yes , My G-Son has his non-sleeping nights, more than before, he to sleeps better & more hours during the day, night terror's and yes, he freaks out over just about anything and I wondered why lately? ... He will repeat .. well, my oldest daughter gave him a bunch of toys one night around 7pm & he calls her britty.. my youngest daughter his mommy said awwee tell britty Thank You & that you love her , he did just that, well our boxer is 6yrs old and has never been around children much but when leelynn saw Romeo, he wasn't use to a dog trying to lick his face and love on him, no way ! .. Leelynn started yelling to the top of his lungs, meltdowns come swiftly, charged, and ready on the spot ! Romeo heard him screaming help!! Help!! Cuz, I think Romeo knew something was going on with Leelynn but didn't know what? Myself and My daughters were trying to talk to leelynn , & from my point of view, Romeo was trying so hard to get close to Leelynn to protect him from Us... LOL... But, leelynn wasn't having it, Now listen,... Here my husband was trying to get ready for work, Romeo was trying to squeeze himself in front of myself and daughters, Leelynn was screaming loudly and NON-STOP.. I was looking at everything happening at the same time, I thought.. WOW!!! Is there a closet sound proof that is, so I can lock myself in it until Next New Years ? LOL .. my daughter, britty, ,& mom Megan were trying to defuse the entire situation without upsetting Leelynn, or Romeo, then Grace comes into the kitchen and starts asking questions about anything and everything!! Then I am trying to fix my husband's lunch, and then Dad of leelynn comes in the kitchen with the bossy little girl lol. HAA HAA... She's 3yrs old & Boy, Oh Boy, oh boy !! She comes in the kitchen with the most bossy attitude and is the cutest little thing ever, she said, noisey people,... Shhhh.. I said, now she just walks in the kitchen and is there for more than one minute tops , has her Doll baby in hand while the dolls legs are dangling lol.. haa haa... Her name is Anna.. like mine .. yay!! She's adorable .. but, I see the most beautiful, bossy attitude ever in my life!! She does whatever she wants & will definitely tell you about it and doesn't Care if you or anybody else likes her attitude or mouthiness, by far... LOL.. I i literally stood back about 10ft looking, listening, & observing the entire kitchen situation and dad walks outside with Leelynn and then what went on for ( felt like days okay ) but went on for at least a good 30 mins, suddenly the dog goes & lays on his bed, Anna walks out by daddy's side, gracey was in the living room playing the piano, and my 2- daughters started joking on each other.. ugh.. idk why they constantly have to joke on each other.. sisterly love .. lol .. Anyways, mom & dad started getting the babies coats on & about to leave for Indiana, HOME... &.. Megan said that leelynn was fine until they all got into the truck ready for home and out of the blue Leelynn starts screaming loudly.. britty toys, britty toys, now both parents are exceptionally Good with the kids especially when it comes to Leelynn and Gracey,.. You would think that they trained themselves their whole life for Autistic children and I couldn't be more proud of those two .. they really are amazing with each child and that ( especially) now days, that to me,.. speaks volumes!!... Anyways, Megan tells me.. Momma, Leelynn said, britty toys for hours, and hours, lol... He kept repeating the same britty toys all night and all morning over n over until he finally around Noonish the next day... Exhausted himself to sleep... LOL.. haa haa... Poor guy... I feel so Bad for him cuz, he will never know how it feels to get married, have children, get a job, drive a car or go to prom or work on a car... I mean , I have been thinking about that poor baby & everything that he will never get to experience or feel or Do... In his life, & that really makes me cry so much for him... Grace she will not experience most any of those things either & it's not okay... I have been trying to understand Autism more now than ever cuz as those two get older and older .. I have always wondered if they will one day see &/or realize that the other children...get to open up a car door sit down and start the car & drive to McDonald's or work, I have often wondered if they would ever feel like.. why am I not doing that like my bubby or my sissy is? That really breaks my heart and my soul... Really bothers Me.... Anyways, I need to start blogging for autism ... I mean it is something I care deeply about & my G- children are everything to me & I will do whatever I need to do for those babies and others with autism... Anyways, I hope & I pray that your children are safe, and I hope that we all stand up for autism... In the name of...The Lord Jesus Christ .. I pray ... Amen ... GNITE everyone... Thank You for your time and I guess I should stop writing so much on here, if I don't, nobody will ever finish up my stories, and I'd be the only person left on here, cuz everyone else got a new page cuz I can't stop writing, blah blah blah... LOL .. ugh... Sorry guy's... & Yet, I just realized that I am still writing away... LOL... Bye.... Anna