The Purgatory of Sleep Deprivation

One of the unfortunate possible side-effects that children with autism s
uffer from is abnormal sleep patterns. Whether problems with going to sleep, or staying asleep, if you have a child like this, welcome to the club of perennial sleep deprivation. If you are not a member of this group of parents, consider yourself very fortunate.

Prior to solving the problem of sleep deprivation, it is first important to decide whether the sleep disturbance is a side effect autism rather than a symptom of typical infant or toddler behavior. Once it has been defined as problem specific to autism, you can ignore the libraries full of books pontificating about generic sleep disturbances. Forget about the
Ferber Method, and the Sears Method and ignore all those experienced with typically developing children giving you advice. They have no idea regarding what kind of difficult challenge you face being chronically sleep deprived due to disability, for years on end, is a special kind of hell.

Let’s get to work.

I’m assuming that your child is out of a crib at this point and you are having difficulty establishing a night-time routine. If you have a behaviorist involved, that’s great; however, if you don’t, this is a suggested way to tackle the issue.

First we need to work on bedtime:

1) Make sure there is nothing in the child’s room that could in any way injure him (i.e., sharp edges, heights he could fall from, unprotected electrical sockets, windows from which the child can open and leave). It is crucial to make sure that the room is 100% safe since you cannot achieve down time with your child in his room, without supervision, if you doubt his safety.

2) Choose the same time every night to put him to bed and create a very ritualized bedtime routine. Then leave the room.

3) Place a sturdy baby-gate on the door and attach a Plexiglass panel so it is impossible for the child to climb the gate.

4) Keep the door to the bedroom open so that you can hear what’s going on (and so you do not feel like a neglectful parent).

5) If the child tires himself out and falls asleep on the floor, you can then carry the child to his bed. If he wakes up when moved, leave him on the floor to sleep. If this becomes a pattern, put a mattress on the floor.

So far, what have you done? You have preserved two to three hours in the evening where you are close to “off duty.” This may or may not have solved the sleep problem, but it has given you some time to unwind or sleep.

Now we need to tackle sleep:

1) Try it the natural way
If the child is toilet-trained and awake for hours on end during the night, you’ll have to get up to let him use the bathroom. Once that is done, you can let the child stay in his room awake and you can go to sleep. At some point, the child may learn to sleep. But then again, he may not. If he is not learning the natural way, you will become desperate because you’ve been sleep deprived for too long (which is not sustainable over the long term). I did it for seven years!

2) Melatonin
The state of the science in terms of melatonin is promising; however, since melatonin is a naturally occurring hormone, and not a proprietary drug, there is not the same financial incentive for the producers of melatonin to test its efficacy as it specifically relates to autism and sleep.

Fortunately, there have been a few studies (in 2006, 2007, 2009, and 2011) that demonstrate melatonin as being effective for many children. There are two kinds of melatonin generally used. The first is sublingual, which can crushed and added to a variety of preferred foods such as ice-cream, honey, or jam; the second type is a time-release capsule which cannot be crushed; the child will need to swallow it whole.

The above studies were all designed so that
everyone, including the study investigator, was blind to study randomization. In other words, no one knew which child received the melatonin and which child received the sugar pill. Their results are promising; however, melatonin was not effective for every child.

If you do decide to try Melatonin, I strongly suggest that you do it under the supervision of your child’s physician, since side effects, although not common, are possible. Melatonin is not a magic bullet; however, if you are fortunate to have it work on your child, you may actually regain your sleep without having to use prescription drugs. Once you are guaranteed to sleep through the night, life will become much more normalized, relatively speaking, for you and your family.