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Sleep Disorder Study Shows the Problems Most Autistic Parents Have With Treatments

Autism is hard not only on the people who have it, but also on the families who love them and are trying desperately to help them.  And it sometimes seems that with each discovery about it, the treatment is confounded by another facet of the affliction.

sleeping toddler
Photo by sdminor1 via Flickr
Case in point: Autism Speaks posted an article yesterday on a study about sleep disorders among autistic children.  And yes, as most parents of autistic children can attest, autistic children have a higher prevalence of sleep issues - getting less sleep and frequently less-productive sleep.

But here's the deal:  if we look at the recommendations for improving sleep, we frequently come across suggestions to reduce or remove stimulation from electronic devices such as TV, computers, iPads, etc.  But in many cases these are the very items that autistic children are the most attracted to, not to mention the very items that they use for simple communication, for filtering out the mass of stimuli they receive, and simply for helping to stay calm while they work within a world that they can control.  And telling an autistic child that they can't use an iPad before going to bed could be the trigger to a fit of frustration that would keep the child up for hours anyway.

(And let's be very clear here: such fits or tantrums are not the fault of the child's decision to be stubborn.  They are, in the vast majority of cases, a child's attempt to deal with the magnitude of outside stimuli that they are unable to filter away, like most of us can without effort.  Imagine always having the radio turned up full blast to some no-man's-land between two stations and you have an idea of what autistic kids can be going through.  And then imagine having similar issues with touch, sight, even smell and taste.  Yeah, this is a big issue, and not the fault of the kids or parents.)

Here's another example: it's pretty well-accepted now that dietary changes can be a great help in relieving symptoms of many autistic individuals.  Whether it's going gluten-free and casein-free, removing soy, using an ancestral diet of some kind, or even becoming ketogenic and using a high-fat/low-to-no-carb diet, nutrition can be a great boon to the autistic digestion, and through that gut-brain axis relief can come neurologically as well.  But... the food that may be most beneficial to an autistic person may set off their taste or smell triggers.  They may actually not be able to choke down liver, or get past the smell of Brussels sprouts.  They may be lucky in that they can even get chicken nuggets into their stomachs.

We're pretty fortunate in that our son eats pretty much anything, but we know plenty of kids who won't eat anything but mac'n'cheese, chicken nuggets, and maybe mashed potatoes.  And, again, it's not because they're just being stubborn - more flavorful food can actually be too much for them to handle and cause pain.

So while studies such as the one done by the scientists in the Autism Speaks article are helpful in coming up with reasons for and facets of the autistic experience, they can frequently cause frustration for the autism parent who's looking to the science for answers.  And yes, it's understood that we have to set baseline measurements for science to be able to progress into treatments and more.  So while I'm thrilled that more understanding as to what's happening with our kids is coming to light, it can also be a bit of a downer as we as parents think "how is that supposed to help us?"

What techniques do YOU have for helping your autistic children get better sleep?  Chime in to the conversation below!  

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