Sleep problems with AS kids

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The problem of sleep among individuals with autism is VERY SERIOUS!! !! It ruined my life as a kid and it has ruined my life as an adult. It was because of sleep that I virtually flunked out of school, and that I have developed substance abuse issues.

When I was little I had the same issues that the OP is describing. My parents used to let me stay up and watch Johnny Carson with them. Other parents would criticize them for it, and mine reiterated that I just did not sleep and it served no purpose to increase everyone's stress level by "forcing" me to go to bed at a certain time when I seemed happier and healthier just staying up.

I'm not saying I have any answers... I never have and still don't There is something wrong with our hardwiring that makes it difficult for us to "shut off." Until more research is done there is really nothing to do except work toward treatments which have proven effective in some of us, such as melatonin supplements, and move forward with the awareness that having sleep difficulties puts a person at a very high risk for developing addictions to drugs and alcohol as they desperately try to acquire a basic biological need that is so elusive.

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I have 2 kids with sleep issues. One is officially dx'd AS, the other is undergoing the assessment now (he's actually 21 so not really a kid either).

I've always thought my youngest could sleep for hours and hours, and the oldest drops off at odd hours and all the time. I've now come to realise, the youngest (12 yrs) takes longer to go to sleep, and is then up and down threw the night, getting drinks, just sitting up or getting out of bed and stretching (he says he has to). This is why I guess he tends to sleep a little longer in the morning.

The oldest (21yrs) can go to bed then lay there until the wee hours of the morning . As the rest of the world wakes up, he is just falling asleep.

My house is fairly active threw the night as a result of all the activity my boys are creating. I now only average about 4-5 hours of sleep a night/day. Constantly tired now, but functioning.

My daunghter has not been diagnosed yet as having AS but her Dr claims she falls in this catergory. Her assessment won't come yet for another couple of weeks but it sure sounds that sleep is a huge deal in AS children. Is my daughters case unusual since its mostly night fits and an occasional night terror and not just having a hard time falling asleep? she also doesn't like to wake up early or she's incredibly cranky.

The types of sleep issues individuals with AS have can vary widely. Trouble falling asleep is super common but not universal. This thread logically attracts posters with a certain shared issue, but there are also posters that haven't joined in simply because the issue does not apply.

I am wondering if I should try Melatonin with my maybe-NT/maybe-ADD daughter. She used to be a wonderful sleeper, but the last few years it has gotten quite bad. What dosing is recommended for kids? I want to be super cautious here, but the lack of sleep seems to be really affecting her mood, and I worry about her.

You say that like its a bad thing Dave! Honestly - reduce, reuse recycle... keep WP clean, tidy and orderly...

I did ALOT of research into melatonin before using it and I did so without a doctor. The recommended starting dose is 1mg sublingual. It is a minute amount. We used this does successfully for 3 years without increasing it. It had no discernable side effects. the only thing i did notice was that after it wore off - about 5 hours, she tended to wake up. Not fully - but usually for a bathroom trip at the same time every night like clockwork but hten back to bed until wakeup time.

Usually it is recommended for older kids but of all the reading I had done, I felt it was safe for my 3yo. I tried it myself for a few weeks before hand too so I knew what the effects were. It is non habit forming, it is naturally occurring in the body which is why it is used so widely in autistic kids. They tend to have much lower natural levels of melatonin thus the sleep problems.

There still are no long term effect studies in younger kids. Mine has been on it for 5 years. I was concerned about this and mentioned it to the developmental pediatrican. I was concerned that the artificial supplementation would effect her bodies natural ability to produce it. She just smiled and ok'ed an increase of up to 3mg, if she needed it. She was unconcerned because while that may be a concern in people with normal melatonin levels and other things affecting their sleep, in autistic kids there is almost a universal deficit of it.

I still use it when I just can't get to sleep.

And if I can't get my kidling to run around like a loon (she has considerable coordination challenges) and tire her out, it is up with the melatonin. She is at the point where she can judge exactly how much she may need to get to sleep. She'll say 1, 2 or 3, depending on how 'loud' her head is any given night.

It works for us and I can't yet justify any of the dire predictions some folks gave me when I decided to use it. I'm glad we found something that worked so early. I can't imagine how a family struggling with sleep issues handles school... we were fortunate to have control over it before it became an issue.

EDIT: Using it occassionally shouldn't be an issue with anyone. Even though it is a hormone, it is a specific, targeted one. It only does one thing - help put you to sleep. It doesn't 'knock you out', it isn't narcotic like at all. It is very gentle in action. My daughter is all ADHD and kids with ADD/ADHD are also prone to low natural levels. Occassional use isn't really questioned by anyone - only in the fact that no one has really done wide scale studies in children. But there has be extensive studies in adults. Even at crazy high doses, it is difficult to get a bad reaction in adults. The low 1mg dose is 'generally considered safe for occassional use.' But as always, talk to your doctor if your unsure.