Another Point of View on the Autism Spectrum

Sleep Deprivation

Part-One

by Candes King-Meisenheimer

Round and round we go. Where we stop nobody knows.

Good restful sleep is one of those things we take for granted... until we can't get it. For the parent or caregiver of a person with autism it can become a catch-22, a never-ending cycle of affect and effect that continuously makes the problem worse until something happens to stop the cycle.

Several readers have contacted us in the last six months reporting instances of sleep deprivation, ranging from the mild to the severe, and the effects these instances have had on their lives. Very often what sets the cycle in motion is their autistic child's inability to sleep normally. The parent gets up with child, trying to get them back to sleep, and end up suffering for it. If the instance is only occasional the parent suffers the effects for the next day or two, and then things go back to normal at night. For some, however, the instance isn't occasional, it's chronic, and a downward spiral begins.

For those of you who have children, whether autistic or neurotypical, you know what it's like to be woken two, three, and five times a night to tend to your newborn baby. The feedings, the diaper changes, or just straightening out a onesy that got into a bunch. Every time you get back to sleep there it goes again. The baby's up, there will be something to deal with that will require you to actually wake up and pay attention, which makes it that much harder to get back to sleep before the next round starts... in two minutes.  And it doesn't happen for one night, it happens every night, for the first few months. You're listless during the day because your adult body, which requires 6-8 hours of uninterrupted sleep, only got 2-3 hours (if you're lucky) of sporadic catnaps. You go about your day, doing the best you can, hoping that tonight, maybe, just maybe, you'll get lucky and this will be the night the baby starts miraculously sleeping through the night. But it doesn't happen. Eventually, however, it does, and the world of sleep returns to a modified version of 'normal'. There are still the occasional problems, the diaper that didn't make it through, the blanket that got thrown off, and so on. But, for the most part you are once again embraced by oh so blessed sleep.

Now, imagine your baby isn't a baby; he's ten years old. He doesn't sleep through the night; he constantly gets up and gets into things. He doesn't understand the concept of staying bed when he isn't sleepy. Perhaps he screams and cries to wake everyone else up. Perhaps he quietly gets up and starts taking all of the food out of the refrigerator and cupboards and starts dumping them on the floor. Perhaps he poops and pees in every room as if marking his territory, or worse smears it on every surface he can find. Or... perhaps he quietly gets up out of bed and finds a way around all of the locks and alarms and leaves the house at 2 AM without anyone else knowing.

Imagine he's autistic.

While not every autistic child is affected by chronic sleeping problems many are. And when the child is, the parents are affected as well. Where a newborn's sleep cycle eventually regulates to his or her family's cycle, an autistic child's may not. Very often it appears to for the first few years, then something happens, something shifts, and the child, who is now older, begins an irregular cycle that even they don't seem able to break.

With a newborn a sense of paranoia usually sets in after the first week or two. Every little sounds makes mom and/or dad wake up, a natural urge to get to the root of the baby's discomfort before he or she starts crying. Maybe we can get to that blanket that fell off and get them tucked back in before the baby actually wakes up. Experts tell us this isn't healthy, that we should let the baby cry, but of course, most of us rarely do, at least with our first child. Eventually we do see the light and let the baby cry a bit, so that it learns to distinguish the little things from the big things and is motivated to do things for itself, like turn over, or pull the blanket up.

An entirely different sense of paranoia sets in when dealing with a child affected by autism or a like difference. We don't want them to become motivated to learn how work the locks on their own, or be inspired to paint with their own feces on the living room wall.

One mother in Tennessee went to the grocery store and did the entire month's buying for her meager budget. There was no money left over and only enough food to get her small family through the month with careful planning. She awoke days later to find her 6-year-old autistic daughter had gotten up hours before she did and had dumped all of the food out of their containers into a huge pile in the middle of the kitchen floor and was happily mixing it up. Most of it could not be salvaged. After working all day to clean up the mess and get her daughter under control she tried to sleep that night, but found herself instead pacing in the kitchen trying to head off her daughter, who came in many times before she got to what little was left. The next day the mother went down to Social Services to get a referral for an emergency food box, but fell asleep in the waiting room because she hadn't slept in over 30 hours. This was not a one-time occurrence for this woman, it happened regularly.

A father in California reported that he and his wife were suffering sever sleep deprivation because their 9-year-old son slept only 4 hours a night and would get up to smear feces on the walls or just run a muck in general. Their work suffered, their meager social lives suffered, their sleep suffered, their sanity suffered. And as you can imagine, the walls and floors of their house suffered. Again, it was not a one time occurrence, it was ongoing, and seemingly, to them, never ending.

A mother in Michigan reported that her 7-year-old autistic son would get up in the middle of the night to 'go for walks'. He found ways around whatever lock or alarm she put in place and would simply walk away, into the woods or into town at 2 or 3 AM.

A mother in Arizona reported that her 13-year-old autistic son would wake up at varying times of night and just begin making noise as if he were getting up for the day. He would turn on the television and turn up the volume. He would decide he wanted pancakes and try to make them himself. He would decide it was time to do laundry and put everything he found together in the washer with a little bit of everything from the laundry room. Her other three children were deprived sleep, the stove caught fire four times, hundreds of dollars worth of clothing, linens, and draperies were ruined, and he poisoned himself once after wondering if chlorine bleach would leave the same slick feeling on his tongue that it did on his fingers. He too, had once been a Poop Painter. And the mother, a widow, was known to fall asleep at any given time because she was up with him so often at night.

These, while true stories, are only examples of some cases, and some of the reasons the parent(s) of autistic children can be sleep deprived. Others involve worry over finances, or will they be able to get the therapy their child needs to make progress. How will they handle the family gathering that's coming up? Uncle Fred doesn't think their son has a problem, even though he doesn't speak, and just needs some good old fashioned discipline. The neighbors don't get it. The school thinks you're handling things wrong. Will CPS show up on your doorstep tomorrow because someone who didn't understand, and didn't even try, called and told them your house was an unlivable mess? Will there be poop on the walls when CPS shows up? Will you be able to explain to your son or daughter why the other kids won't play with them? Or why the other kids were mean to them already?

Here's a classic: the father lays awake in bed thinking that if his wife would just pay more attention to their child things wouldn't get so out of hand. Guess what? The wife is lying awake next to him thinking that if he just spent a little more time with their kid he would understand and things would improve. And all the while 'marital relations' have become tense or non-existent. That ego blow alone is enough to cause untold amounts of insomnia on both sides. So, now even when the child is asleep mom and dad aren't.

So, what do we do about all of this? Over the next few articles we'll explore options and advice from experienced parents and experts on how to handle sleep deprivation, insomnia, and solutions to night-wandering children.

But know this, if you are a parent or caregiver of a person with autism or like disorder that is suffering from sleep deprivation you are not alone. There are other's out there that know exactly what you're going through. Some have found a way to deal with it or make effective changes, and others are reading these words hoping to find some for themselves.

Hang in there.

Candes King-Meisenheimer
APOV on Autism

Introducing Sugar Temptations,
 by Chef Pamela Nicosia

Specializing in Gluten-Free Cakes and Deserts

by Katherine Revell

Finally, a local, culinary institute-trained chef who can custom-make GFCF cakes for birthdays or any other occasion! GFCF Mommies and Daddies in Miami-Dade, Broward, and Palm Beach are in for a treat, thanks to Chef Pamela Nicosia (shown here with her adorable son, Luca).

Pamela is the founder or Sugar Temptations at Grainless Kitchen and she is partnering with local health food store Nutrition S'mart to provide scrumptious, yummy, melt-in-your mouth cakes and desserts for those who suffer from food allergies, especially Celiac Disease. Nutrition S'mart in Pembroke Pines will regularly stock her creations in the freezer section. Soon, Nutrition S'mart will have a special "Fresh Friday" once a month, where customers will be able to purchase her just-baked items, fresh from her Grainless Kitchen.

Chef Pam will also be teaching a gluten-free cooking class at the Pembroke Pines Nutrition S'mart on the second Thursday of every month (check store for details).

I was excited to learn about Pamela at Nutrition S'mart's recent "Gluten-Free Awareness" event. The Prince is having a birthday party soon, and I wondered if she might create a bakery-style cake, as well as cupcakes for the occasion. Many of the children invited to the party have serious allergies, and although I can make a decent GFCF cake, more complex food restrictions are beyond my capabilities. I needed a professional! To my delight, Pamela offered to create a 3-D cake in the image of Lightning McQueen, from the movie Cars. She uses all fresh ingredients (no artificial dyes or coloring) and she can customize the ingredients based on allergy needs. For example, our cake needed to be GFCF, peanut, and soy free. She can also create cakes that are egg-free too. Our party is not until later this month, but I'll be sure to post photos here!

"I really would love everyone in the GF community to know that I am here and to help in any way I can, whether it be working with schools and providing treats on occasion, doing fund-raisers, or simply doing a cake," says Chef Pam.

You can see some examples of Pamela's artistic cakes on her website here. In addition, if you are interested in ordering a custom cake, you can order it directly from Pamela (her website has order forms that you can email) or you can place your order at Nutrition S'mart by visiting the Pembroke Pines store. In addition, if you do not live in the local South Florida tri-county area, you can print a product request letter from her website to take to your local health food store if you would like them to order Sugar Temptations products for you.

"It gives me such joy to see how thankful my customers are, especially if it's a child," says Chef Pamela. I can attest to the fact that her cupcakes are really moist and delicious, and as Pam says, "you'll never know the gluten is missing!"

How Do You Do It?

A new Soap Box Issue

I have 6 children, 3 of whom are on the autism spectrum. Add to that, my husband is also on the spectrum with Asperger's Syndrome, and most people just stop, let their mouths drop, and can't find the air to come up with words, much less any words to say. When they do, 9 times out of 10, their first words are, "How do you do it?"  read more...