Tuesday, October 11, 2011

My Generically-Titled Autism Post: Today, sleep disturbances, and why maybe melatonin isn't right for your kids.

I used to call this "Autism Works," but then I found out there's a group called that already. (Find them here; I'll talk more about them in the future.) So while I think up a new title, I'll just go with the generic title. Click here for more posts like this with information about businesses, apps, people, and other aspects of raising a child with autism.)

It's 5:53 a.m., and I'm awake and working on my blogs instead of sleeping until... well, I'd usually only sleep until 6 a.m., so it's not that bad that I'm up, but still, I don't like losing that last 15 minutes of sleep on days like today, which began with Mr F and Mr Bunches both waking up at about 5:45 a.m.

Or, at least, that's when they woke me up. Mr Bunches woke me up by yelling "Dad!" and getting me in there to restart the movie he's currently watching ad infinitum ("Lilo & Stitch"), while Mr F had likely been awake for a lot longer, given that he was wide awake and tapping a stick against a wall to kill the time.

Mr F doesn't sleep. Or at least, not like we sleep. Sweetie and I joke that Mr F only sleeps every fourth day, and that's about right: Most nights, we can hear him in his room (which we keep locked to avoid him wandering around or getting out of the house at night) until well after we fall asleep, and many nights we can hear him around 2 or 3 a.m. wake up and begin his day. Then, about every fourth day, that catches up with him and he can't be woken up, as happened this past Sunday when he fell asleep on the couch from 4 to 5, then, after I gave him a bath to wake him up, he fell asleep again and then fell asleep in the car while we were driving around until finally we let him go to bed at 7 p.m.

So sleep is on my mind this week: Sleep and autism.

This study, "Sleep Problems In Autism: Prevalence, Cause, and Intervention", looked at just that problem. It noted that as many as 89% of autistic children exhibit some form of sleep disorder at one point, and summarized the types of problems:

Studies of sleep in children with autism have generally reported severe problems associated with sleep onset and maintenance. Irregular sleep–wake patterns, problems with sleep onset, poor sleep, early waking, and poor sleep routines have been found at all developmental levels, with increasing severity at lower developmental levels.

Additionally, shortened night sleep, alterations in sleep onset and wake times, night waking and irregular sleep patterns (with the presence of a free-running rhythm in one case) have been reported.

That's Mr F right there: all of them. The study concluded that autistic kids are more likely than any other group of children to have sleep problems and also concluded that it's likely due to something specific in the kids.

And it doesn't just cause dads to be awake before 6 a.m.; it also leads to problematic behavior during the daytime, including communications delays. Or, perhaps, the study notes, communications delays lead to sleep disturbances:

A relation between social and communication difficulties and sleep problems is possible. The sleep–wake cycle is a circadian rhythm and there is evidence to suggest that, as well as the light–dark cycle, humans use social cues to
entrain circadian rhythms.
Routine and social cues are thought to help young infants develop stable sleep–wake patterns with the longest sleep occurring during the night hours. Children with a primary social-communication deficit may therefore find it difficult to use such cues to entrain their rhythms, resulting in problems with their sleep–wake schedule.

See? You didn't know that you know when to go to sleep because society tells you, did you? And autistic kids may not pick up on that.

The study also noted that melatonin deficits may be a problem, about which more in a minute. Another possible cause of sleep disturbance was increased anxiety, which makes me sad -- I don't like to think of Mr F and Mr Bunches being too nervous to sleep, but it seems to fit at least Mr F's personality. And, finally, there was some stuff about EEG's in sleep and REM sleep patterns.

Bottom line: We don't know why autistic people don't sleep well, which makes it kind of silly to recommend cures or interventions, but, then, we do lots of silly things, and the paper goes on to recommend some cures and interventions for something that we don't know the cause of.

To editorialize for a moment: Suggesting a solution for a problem without knowing the root cause of the problem is stabbing in the dark, or treating only a symptom, and either one may or may not be better than doing nothing. Consider an old joke:

Man: Doctor, my arm hurts when I go like this.

Doctor: Don't go like that.

That solves the problem, right? But it's not medical care. Or suppose a person shows up at the ER with a gunshot wound, and the doctor removes the bullet fragments and sews up the wound and sends the person on his way. Would you consider that an effective treatment? Or should the doctor have inquired how the bullet got there?

Just some thought experiments. Now, on to the solutions for the unknowable problem!

The study begins by noting that medications were the most common form of help for autistic kids with sleep problems -- but that about half of the parents questioned thought behavioral interventions worked just as well as medications. In our house, we've talked about medications at times for Mr F, and I downloaded the Autism Speaks Medication Decision Kit, a helpful packet that helps provide information and questions to guide you in a decision on whether or not to medicate your child-- for whatever problem. (Get it here.)

Using it, I decided (with Sweetie's help) that we wouldn't medicate Mr F, at least not yet -- because most of the medications listed don't have any clearcut effects on Mr F's conditions and some of them can have severe side effects. It seemed wrong to me to put a 5-year-old on strong antipsychotic medicines when he's not that much trouble.

If your child is on medication, or you've considered it, you should definitely get the kit and read it through. It raises a bunch of issues that I hadn't considered at all, and has helpful questions to ask your doctor, and yourself, about the medications.

Another attempted treatment was faded bedtimes, or moving bedtimes gradually to get the kids to sleep at the appropriate times. This was found to have little effect on the autistic children in the study, something I could've told them. (Currently, our routine is to begin bedtime at about 7:15, with the boys getting medicine, then a story read to them, then a bath, then bedtime with a movie on their TV. The movie on their TV is imperative: they will not sleep without a movie on, and we've learned to put movies in that have a continuous play feature, because the movie ending will frequently wake Mr Bunches up, and you haven't lived until you've been woken up every 87 minutes to restart a movie.)

Then there was parent training: Teach parents how to properly encourage good behavior (sleep) and discourage bad (not sleep.) Although only one family completed the 6-week program, that family reported reduced stress and slightly better sleep routines; I suspect the reduced stress came from parents being more able to cope with the stress through the training, but that's the cynic in me.

Then there's the one I might try: Light intervention:

Two additional treatments for sleep disorders which involve adjustment of the circadian sleep–wake cycle, are light therapy and chronotherapy. Light therapy may be used to treat a variety of rhythm problems, including sleep problems. Bright light suppresses the secretion of melatonin.

Additionally, it has been shown that periods of bright light treatment in the morning will advance the melatonin and sleep–wake rhythms, while bright light treatment in the evening has a delaying effect.

That is, show kids a light box in the morning to get them to sleep better at night, which might work for kids (like ours) who routinely wake up at 3 or 4 a.m., when it's dark out and then have trouble getting to sleep at night.

Finally, melatonin, which almost everyone we talk to treats as a panacea for this problem. At the boys' 5-year-checkup, Sweetie asked the doctor whether it was okay to take melatonin for their sleep, and he approved it: 1 mg each night, he said.

The first melatonin we were able to find was tablets, which is a problem, because the boys won't take pills -- they won't even take medicine from a spoon or those little plastic cups; we have to put it in a syringe and squirt it into their mouths.

We addressed that by pounding the pills into a powder -- literally, I hammer them into a powder, because I'm not a 15th century chemist and don't have a mortar-and-pestle -- and then mix them in with some other liquid, ordinarily some ibuprofen or water; it works better with ibuprofen because they (oddly?) like the flavor of that. (Lately, they've had a cold, so they get the melatonin mixed in with their nighttime cold medicine.)

That worked okay until Mr Bunches saw me scraping the pills into the medicine and then didn't want to take the medicine, at all -- because he now knew it had pills in it and it grossed him out. So for a week we had to wrestle him into the medicine and risk him spitting it back out, until he cut his foot one day and I began telling him the medicine was to make his foot feel better, after which he took it.

(So at night, Mr Bunches will say "Medicine!" and when I say "Yes," he still sometimes says "My foot!" even though his foot is long since healed.)

We also got some of the Natrol liquid melatonin, which we thought would be easier to use than the crushed-powder pills, but the boys hated the flavor of it -- spitting it back out each time, so we've foregone that and every night I get out my hammer, medicine, tablets, and syringe and go to it.

But here's the thing:

I don't think it's working.

Mr F has been on melatonin for a month now, and so has Mr Bunches, and I've seen no real changes in their sleep patterns, at all. I'm not ready to call it quits yet, but I suspect that the melatonin is like the gluten-free diet and other fad remedies: Not exactly the catalyst for change, but it gets the credit for change when it happens, like an ineffective quarterback who wins the Super Bowl in spite of himself.

And here's the other thing: I'm not sure melatonin is a good thing, because I took it for a week or two; I've also suffered from insomnia most of my life and have had sleep problems off and on for the last few months, and so I took the same dose that the boys took for a few weeks, and I didn't like it: My sleep felt less restful, and I had more realistic dreams that left me feeling tired -- it was like I never slept, at all, even though Sweetie would swear I did.

So after two weeks, I stopped taking it entirely, and I won't go back.

Which makes me wonder about why I'm giving it to the boys, if it doesn't seem to work and I didn't like it. But I'm not ready to declare it a failure yet, because a month seems too short to really test it out... for the boys? I don't know what effect it's having on them; Mr F can't tell me "It gives me vivid waking dreams that make it feel like I never sleep," so I have to guess whether it's doing good, or bad, or nothing. 2 out of 3 of those say don't give it to them...

...These are the kinds of decisions you never even suspect you'll have to make. I'll let you know what I decide.

1 comment:

anna. said...

the bullet wound analogy -- very true. so often, the branches of life's problems get fixed without any mention of their root. i wish i had answers. instead, i just like your stories that make me think a little deeper than i would have to otherwise.