Sleep issues and ASD
By Holly Bortfeld
I love sleep. LOVE IT. Love to be snuggled up in my bed, fresh clean sheets, fluffy pillows, and a heavy comforter, I’m in heaven. I love it even more because I can appreciate it, since I didn’t have it for a while, because my son didn’t sleep for about two years.
When my son was young, from age 2-1/2 until he was about 4-1/2 years old, he just didn’t sleep. Which meant I didn’t sleep, not well and certainly not a whole night. And since he was awake, he was up and getting into things, and even leaving the house at 3 a.m. once. That was almost 15 years ago, but that fear doesn’t go away. To this day, I’ve never slept the same. I can hear every single sound in my house, all night. Any door opens and I am instantly awake, no matter what time it is.
When the sleep disturbances started for my son, I put a baby monitor in his room so I could hear him, but that didn’t stop him from getting out of his bed or room. Then I put up a gate in the hallway to keep him in his room, but allow him access to the bathroom. That didn’t work, as he’d flood the bathroom or play all night, making noise and waking my daughter up. Then we turned the doorknob around so we could lock him in his room at night, but we could still hear him on the monitor, and he stayed up all night playing, crying, babbling, etc. So I moved to sleep on the couch for a few months, then the hallway floor for awhile, then his bedroom floor, then his bed, in an effort to get him to stay as quiet and calm as possible and allow us to get as much sleep as we all could, without him leaving the room and getting hurt.
I was physically and emotionally exhausted. I hadn’t had more than two hours of connected sleep in two years. Neither had my son. He was a mess. Medically, behaviorally, educationally, just a mess. On more than one occasion, I caught myself falling asleep driving to therapies. Cooking and just sitting still would cause me to start to fade. I had to keep moving. But I also knew this couldn’t go on, or something really bad was going to happen. We were all at our breaking points and we had to fix it, fast.
We did try melatonin, which seems to work for almost everyone, except for my kids, apparently. We had to branch out and investigate WHY my son wasn’t sleeping and try to fix the problem at its root.
Many studies show that sleep is often disturbed in people with autism spectrum disorder. More than 4,000 papers on scholar.google.com, show that between 40-80% of people with ASD have sleep disturbances, but that typical treatments prescribed are often short-lived as they don’t always address the underlying causes of sleep disturbances.
Typically we hear two reports from parents:
Child goes to sleep but wakes in the night.
- This is almost always caused by pain, primarily due to gut issues or heartburn (GERD/reflux).
- First step is a GI workup and scoping, followed by treatment. If you know the problem is reflux, removing the foods that exacerbate GERD/reflux should make a huge difference. Foods that exacerbate GERD and heartburn are citrus, vinegars, caffeine, alcohol, tomatoes, garlic, onion, peppermint, fatty foods, and carbonated drinks.
- Seizures can also cause sleep disruptions. If you suspect seizures, get a thorough neurology workup done, including a 24+ hour unmedicated EEG.
- Neurotransmitters out of whack can cause fight-or-flight/anxiety symptoms that disrupt sleep. Test and treat, if necessary.
Child doesn’t fall asleep for many hours.
- This can be caused by many things, including yeast, phenol sensitivities, parasites, vitamin or mineral deficiencies (usually magnesium or iron) or the side effect of a medication they are taking. Autonomic nervous system dysfunction can cause anxiety-induced insomnia as well.
- These are the first things your doctor should test for with a child who takes many hours to fall asleep.
Rarer, but still worth mentioning are night terrors.
- Some of the most common aids for night terrors are Epsom salt baths, removing gluten (if you are not already GFCFSF), magnesium, P5P, MB12, immune boosters (probiotics, zinc, C, D3, low carb diet), egg allergy and autonomic system dysfunction help, usually GABA and niacinamide.
What is GERD - Gastroesophageal Reflux Disease (excerpted from MedicineNet)
- GERD (acid reflux) is a condition in which the acidified liquid content of the stomach backs up into the esophagus.
- The causes of GERD include an abnormal lower esophageal sphincter, hiatal hernia, abnormal esophageal contractions, and slow emptying of the stomach.
- GERD may damage the lining of the esophagus, thereby causing inflammation (esophagitis).
- The symptoms of uncomplicated GERD are heartburn, regurgitation, and nausea.
- Complications of GERD include ulcers and strictures of the esophagus, Barrett's esophagus, cough and asthma, throat and laryngeal inflammation, inflammation and infection of the lungs, and collection of fluid in the sinuses and middle ear.
- Barrett's esophagus is a pre-cancerous condition that may require periodic endoscopic surveillance for the development of cancer.
- GERD may be diagnosed or evaluated by a trial of treatment, endoscopy, biopsy, X-ray, examination of the throat and larynx, 24 hour esophageal acid testing, esophageal motility testing, emptying studies of the stomach, and esophageal acid perfusion.
- GERD is treated with life-style changes, diet, antacids, histamine antagonists (H2 blockers), proton pump inhibitors (PPIs), pro-motility drugs, foam barriers, surgery, and endoscopy.
- In people with ASD, slow motility due to mitochondrial dysfunction can cause GERD.
Studies do show a few things –
- Kids who don’t sleep or don’t sleep well have behavioral and cognitive issues, which makes sense, as no one can function well on little to no sleep.
- People with ASD sleep on average one hour less per night than non-ASD people, and they spend less time in REM sleep (15% vs 23%), making their sleep less peaceful.
- Insomnia can be caused by medications the person is taking.
- Stress, depression, and anxiety are not the only causes of insomnia. Many causes are medical, like GI issues, pain, and reflux.
Things that help sleep –
- During the day: Cardio exercise, yoga and tai chi, meditation, sensory regulation activities.
- Bedtime: A calming bedtime routine, including quiet music or a metronome, weighted blankets, no liquids after a certain time, darkened room, massages, Epsom salt baths, no TV or stimulating toys/music. Use a visual schedule and set the bedtime expectations so that the child knows when it’s time and what is expected to lessen anxiety. If the child’s bedroom is stimulating (bright colors and loud toys), you should consider changing the decor and removing anything that is interesting enough to keep your child awake.
- Supplements: melatonin (pills or spray), MB12, magnesium, L-Theanine, Taurine, GABA.
What ended up working for my son was GI treatment for colitis and reflux, a cleaned up diet to reduce carbs, improved immune system, and evened-out neurotransmitters. Since we got those things on board, he’s been a 10 p.m.– 6 a.m. sleeper to this day.
Studies and more reading:
New study: Kids with Autism Have Trouble Sleeping
New research in Melatonin & Autism: What Parents Need to Know
Dr. Xue Ming on Autonomic System Dysfunction and ASD
REM Sleep and ASD study
Scholar.google.com’s collection of studies on Autism and sleep.
Children With Autism: Sleep Problems and Mothers' Stress
Autism Journey Blueprints
Parent Mentor Program
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