A while back, we were at a crisis point with our J-Man’s sleep. It would take him 2-3 hours to go to sleep at night, which usually resulted in him going to sleep between 10-11PM. He was completely unable to calm himself down at night. We’d look on the video monitor, and he was essentially doing the equivalent of breakdancing in his bed, bouncing off the sides of the bed and up and down on the mattress. He was hollering, squealing, and screeching a lot, typically the sounds of being overstimulated and too overloaded to relax at all. Eventually he’d pass out from exhaustion and sleep. This was affecting everything from school to life at home.
He never has been a great sleeper, to put it mildly. He didn’t sleep through the night until he was 18 months old, and even then we endured long stretches where he’d get up at least once or twice a night or get up really early. There were countless nights where he wouldn’t go to sleep unless we were in the room holding him. We went through long periods of it taking herculean efforts just to get him dressed and ready for bed, let alone get him to sleep.
It started getting better, and we got to where with some confidence that we could expect him to make it through most of a decent night. Then we hit that patch a while back where he was just completely unable to put himself to sleep until he passed out from exhaustion. He was doing poorly at school and at home, he was unable to regulate himself much at all during the day because he was too tired to cope, and of course we were all on the edge of insanity. It was a really grim time around here.
We knew we had to do something and soon. If you aren’t getting sleep, everything else will go to hell. Sooner or later, you will break. We didn’t know what we should do, but we were ready to consider just about anything at that point.
One of the things you won’t see me do much is talk about or advocate supplements. I personally take a typical assortment of things (e.g., multivitamin, fish oil, probiotics), but I take the supplements market with a lot of skepticism. The rigors of testing and science in general are regularly missing when it comes to these largely unregulated products. We give our J-Man much the same kind of things: multivitamin, probiotics, calcium (since he eats almost nothing dairy or anything else with calcium in it), and a green superfood powder that is about the best we can do right now for vegetables since he refuses to eat them. It’s not the same as real food, but it’s the best way we can improvise at the moment.
All sorts of people gave us advice about pills, supplements, and medications, many of which I found rather dubious. So that’s the perspective we brought with us when looking at our J-Man’s sleep difficulties. Bottom line is that we knew we had to do something or we were all going to go crazy. Sleep is the foundation for everything in daily life, and no one was doing well without it.
I’m not really spoiling the plot to jump ahead and say that we settled on using melatonin, which has worked well for us. Before we entertained trying something like melatonin or something in prescription form like a sedating-type mood stabilizer, we tried everything else we could think of. We aren’t opposed to medications by any means, but since our J-Man is minimally-verbal, it’s really hard to know what effects medications (or much of anything we do) specifically have.
I don’t like experimenting without some means of understanding the effects of what we do. I’m a pretty analytical type. I like knowing how things work and why. I bring this sort of process to bear when we attack problems like sleep.
Here are non-supplement/non-medication things we tried over the years that worked to varying degrees. I do think it’s worth experimenting with these and similar techniques before giving your kids any supplements or medications.
- Structure your nighttime routine. Do the same thing every night when getting ready for bed as predictability itself is often calming.
- Institute a standard time for bed. This is true for most kids and adults whether they’re on the spectrum or not.
- If your child likes water, try a nighttime bath. A nice, warm bath can be very relaxing.
- Look in your child’s bedroom for sensory violations, and don’t forget the fabrics they wear to bed. If anything seems bothersome to your child, eliminate it and see what happens.
- Try a white noise machine if any sudden noises wake your child or keep them from going to sleep. Many find white noise machines calming regardless.
- Look at diet, particularly in the afternoon and evening. Are they eating things that could keep them awake (e.g., spicy food, high in fat), eating a lot before bed, or drinking things that inhibit sleep (sugar or caffeine)? Are they allergic or sensitive to foods or drinks that would then upset their sleep? Are they experiencing silent reflux?
Be prepared for these changes to be a battle at first, but stick with it. One or more of them may pay off. Also don’t forget that if your child gets out of bed if they can’t sleep, make their room safe. Sleep deprivation can be very agitating.
If all this fails or if it stops working, consider these medication type interventions. We started with melatonin, which is an over-the-counter sleep supplement rather than what I’d consider medication. It has proven sufficient for us right now. It may not remain so, and we know that. When or if the time comes for us to adjust what we do, we will attack the problem then.
The first few days didn’t go too well, but that did pass. This isn’t unusual. At first, he’d wake up in the middle of the night, and it was really unpredictable about what would happen after that. He might go back to sleep after a while, or he might have just stayed up for good. We had this sense “Oh, crap” feeling about it when all this happened. We worried that we were trading off him taking forever going to sleep for him going to sleep quickly but waking up at 3AM – essentially the same amount of total sleep shifted backwards three hours. Thankfully after a week or so, things stabilized. He was going to bed pretty quickly and getting up within reason of a normal hour. (6:30-7:00 AM plus or minus)
Some parents we know have reported undesirable side effects that don’t go away, though. One reported that their child had night terrors upon taking it that went away when they stopped. Others have said the problem of time shifting their kids’ sleep (going to bed earlier and getting up earlier) rather than getting more sleep didn’t go away. Some parents found their child got more and more resistant to the effects of melatonin as time went on. Our J-Man seems to have had a more unusual side effect. His bowel movements changed for quite a long time, though now they are getting closer to normal. I can’t say for sure if it’s from the melatonin or why it happened, but it seems likely they’re somehow related. This hasn’t proved a big deal for us, though.
This past week, he has been getting up very early again – about 5AM. We can attribute a lot of this to the time change, which is always the bane of our existence. We have started to wonder whether the current dose of melatonin isn’t working as well, but we’re taking a wait and see approach about that.
Most everyone starts with the 3mg dose. Melatonin is available at most big box and drug stores and is very inexpensive. I know some have bumped up to 5-6mg and/or have ended up supplementing it with a prescription medication. The 3mg remains pretty effective for us. I’ve heard mixed reactions to time release melatonin, some saying it works out that the dose is never strong enough to get or keep them asleep.
Melatonin is definitely one of those “your mileage may vary” products. It is generally considered very low-risk, so as experiments go this should be one you can do with less anxiety. However, for children under age 5, I’d suggest being more cautious and going over this carefully with your pediatrician, which really you should do regardless. I don’t know what the minimum age is – or if anyone knows – but as a rule, the younger the child the more careful you should be.
[Edit: 11/14/11 - The day after I posted this, I saw this article "Genetic studies probe sleep hormone’s role in autism" about a study finding much lower concentrations of melatonin and the enzyme that produces it in their autism group vs. their control group. Very interesting!]
If you try melatonin and it doesn’t work, you may want to consider prescription medication. I know many families who have gone this route to varying degrees of success. Many meds that normally aren’t used for sleep disorders do work for autistic children for reasons no one quite understands. While off-label use of prescription meds is rather common among autistic children, it’s still pretty confusing to parents and medical professionals, too. There indeed are meds primarily for mood disorders that are traditionally used for calming and sleep in neurotypical people that also work for autistic children. You should be very careful with these in my opinion and not use them without caution and close supervision of a qualified medical professional, particularly a child psychiatrist who specializes in autism.
I personally from experience would not recommend using psychiatric type meds under the direction of a pediatrician or general practitioner. I think it’s critical to find a specialist in both autism and pharmacological interventions. These are not meds to screw around with, and it’s rare that pediatricians have the specialized knowledge required to manage medications with autistic children, particularly when many specialists don’t yet understand how or why many medications work with our kids either.
Standard disclaimer that you should always use supplements and medications under the direction of a qualified medical professional. Melatonin is one of the safest and natural options available for helping your child sleep. I wouldn’t say it’s been a ‘wonder drug’ like some make it out to be, but it definitely has given our son a number of improvements to his sleep that have made life easier on everyone. We certainly give it a thumbs up.
[Thanks again to Danette at S-O-S Research for including this post in this month’s Best of the Best series on ”Medications and Their Use with Special Needs Kids” edition. Starting November 15, you can see the entire collection of posts via that link.]