Tuesday, November 23, 2010

Sleep and Autism, Sensory Processing, ADHD, and Children

Children with autism, sensory processing disorder, adhd are sometimes very poor sleepers. They have trouble falling asleep. They don't always stay asleep. My child with autism didn't sleep through the night for five very long years, and sometimes, she still goes through periods where she has trouble sleeping. Even typically developing children can be poor sleepers.

Sleep is a big topic on groups of parents who have children with special needs. Here, in one very long blog post, are all the notes that I have taken over the years at conferences and workshops on factors that can impact sleep. I'm not the expert; I'm merely passing along the notes I've taken from professionals familiar with sleep problems.

Sleep is important to all of us. A lot of families I know use a prescription drug or OTC melatonin to help children sleep. I am bothered by this when doctors, professionals, and parents use a drug or supplement first without ruling out causes to sleep challenges first. I am even more bothered by behaviorists who view sleep troubles as "manipulation" on the part of children.

Here are some things I've been told about sleep and autism, things that are worth considering, researching, assessing for risk in your own situation with your own doctor or professional. (I am not a doctor. None of this is medical advice or professional advice of any sort. Do your own research, talk with your own doctor, make your own decisions about what you are comfortable trying with professional supervision.)

For some poor sleepers, there is not one single cause; there are multiple causes, and trying one intervention without trying a combination of interventions may be necessary. There are multiple puzzle pieces at play in some of our kids.

I have attended more autism conferences than I can count. In biomedical tracks, doctors report that milk is a big culprit in sleep issues; so is gluten. No, we don't have the science to prove it, so if you are one of those parents who wants double blind placebo studies, we don't have those. We have thousands of anecdotal reports from parents. I know many parents who told me a child began sleeping better immediately (within three days) with the complete removal of all milk products (casein). A lot of children begin to immediately sleep better on the GFCF diet. (A nutritionist can help you make sure your child is getting enough vitamins and minerals when you try the GFCF diet by analyzing a food journal. I used the services of a nutritionist at our local health department to analyze my daughter's diet after we put her on the GFCF diet.)

Soy and other foods can affect sleep, too, including dyes and preservatives (research Feingold diet). One book with a lot of information that may be helpful as you research is Doris Rapp MD's, "Is This Your Child?" Another is Kelly Dorfman's, "Cure Your Child With Food?" Here is an article by Kelly Dorfman about sleep.

A Michigan holistic MD, Rick Ng, told parents at a biomed support group meeting to make sure we get our kids out at noontime and "march 'em around in the sunlight" and to allow our homes to darken with the day, using as little artificial lighting as possible at nighttime, to allow the body to use natural sources of light and dark to set wake and sleep cycles. He told us to avoid or minimize TV, video games, computer, etc, at night, as the flickering light can fool the body into thinking it's day (and awake) time.

Some children experience burning acid reflux when they lie down and try to sleep. They are unable to tell us about the pain and burning that keeps them from falling asleep and staying asleep. For some children, reducing reflux through some dietary changes is enough to solve the problem, although you usually need some lab testing for food sensitivities to accomplish this. Find a doctor who can help rule it out or diagnose properly and treat, if needed. Don't try treatments on your own.

Yeast in the gut can contribute to sleep difficulties, and one symptom of yeast that I hear about again and again is laughter and giggling during waking in the middle of the night. Yeah, I thought it sounded crazy, too, but a) many parents report the connection and b) it makes sense to rule out yeast out as a possible factor in sleep problems when you think about the reasoning behind it. Kelly Dorfman is one of many professionals whom I've heard talk about this issue that affects sleep. Find a doctor who can help rule it out or diagnose properly and treat, if needed. Don't try treatments on your own.

Tooth pain (cavity, cutting new teeth, loose tooth), sinus and head pain, throat pain (sometimes caused by reflux; sometimes by allergies and post nasal drip; sometimes by a virus) can keep a child from sleeping. So can ear pain caused by the pressure of fluid in the ears or infection. Find a doctor who can help rule it out or diagnose properly and treat, if needed. Don't try treatments on your own.

Many parents believe that epsom salts baths just before bedtime are helpful. Research first; get your doctor's okay. Magnesium can affect the heart; that's why you want to include the doctor in this decision. Susan Owens and Rosemary Waring are two names to begin your research. (Don't try epsom salts baths without researching them and clearing es baths with your doctor(s). I am not a doctor; this is not medical advice. Find a doctor who can help diagnose properly and treat, if needed. Don't try treatments on your own.)

Vanderbilt is studying low iron levels and how that relates to sleep. You might ask the pediatrician to check your child's iron levels.

SCREENS are an issue with sleep. Read more HERE.

SENSORY: A couple of years ago, I attended a two-day HANDLE Program training. I was completely new to this program, and I have to admit, I learned a lot of new ideas. Having done sensory integration therapy with a child on the autism spectrum for going on 8 years, I thought I was pretty "up to speed" as a mom. But HANDLE gave me a perspective I had not considered, and we have begun to introduce a couple of the activities, and am considering an assessment by a HANDLE professional.

We spent two days studying the neurology of the senses. I can't remember when I've looked at drawings of the brain that much! An emphasis on proper nutrition and dietary contributions to behavior was included in the presentation. Very biomed/MAPs! friendly. A neurodevelomental perspective, too.

During my two-day HANDLE training, I learned that one sensory related issue may be related to another sensory issue. For example, I've heard that when a person loses his sight, his hearing becomes more keen. In autism, when children are not using their eyes/vision to the fullest, then their hearing can become more sensitive. (we know our children are often not gathering non-verbal info from their vision-they aren't using their vision in a way that NT individuals do) However, individuals on the autism spectrum may use their eyes as a substitute for another SENSE.

A child with one underdeveloped sense, oh, say, proprioception, may indeed have an overdeveloped sense of hearing. Falling asleep may be challenging to a person who hears things that the rest of us tune out.

Individuals with asd often have little to no sense of proprioception, no sense of where they are in space, and they compensate for that lack of proprioception by using their vision to tell them where they are in space. One evidence of this idea is that sometimes our asd children have trouble falling asleep and staying asleep, because when they close their eyes, they're shutting off their most relied upon sense as a substitute for a lack of proprioception. In other words, when they shut their eyes, they lose the sense ofwhere they are. The issue is a problem with integration.

Many families report that their kids on the autism spectrum will fall asleep as long as Mom or Dad lies down with them as they fall asleep. Many report that when their children awake in the middle of the night, they aren't able to fall asleep alone - they need to be next to someone.

If you don't know where you are in space (proprioception) and you use your vision to tell you where you are, it makes sense that when you shut your eyes to try to fall asleep, you would need some sort of reference point to tell you where you are. Mom or Dad make a good reference point as you doze off to sleep. "I think; therefore I am." becomes, "I feel myself next to Mom or Dad when my eyes are shut; therefore I am...and I am able to fall asleep."

Thomas McKean, author of "Soon Will Come The Light", told us during a presentation that he sleeps surrounded by teddy bears, so that when he wakes in the night, he can press his back into one. I didn't understand that idea until the HANDLE two-day intro, but it makes sense that the teddy bears tell him where he is. Some families swear by expensive weighted sensory blankets at bedtime - now I know why they work. There are a lot of ideas that I would not try with a toddler or young child - we didn't introduce pillows until our kids were older. A body pillow to wrap arms around and/or a heavy all cotton blanket or quilt (watch the clearance aisles at Marshalls and TJMaxx) may be enough if for an older child who is waking and not knowing where he is in space when his eyes are closed. (There are always safety considerations to think about: Ask your pediatrician if your child is old enough for pillows - I am not a doctor and do not play one on my blog. Do your own research and make decisions based on your specific situation.) I know of some parents who swear by a fun tent that is made for a twin bed; their kids w/ autism began sleeping better in a tent. (I'm not sure about flame retardant chemicals in the tents; I chose not to try a tent at my house.) I know one child who began to sleep though the night when he inherited a bunk bed and he began sleeping in the bottom bunk. I suspect that the closed-in space provided by the tent or top bunk helps these individuals know where they are.

A HANDLE practitioner can assess your child and offer activities to help with sensory integration. We learned at the HANDLE two-day that some folks use another sense to help kids know where they are in space when they shut their eyes. A small lamp or nightlight is one way (although there are studies that show that lighting at bedtime is not healthy). Soft music is one way. A noise machine or fan for white noise is another. At our HANDLE two-day, use of scent was suggested (lavender). I've never tried scent (I don't like to smell scents when I'm sleeping). There are always safety considerations to think about: If your child likes to play with cords, you'll have to find battery operated options. If your child is a climber, then bunk beds and tents would be out, in my opinion. Very young children don't get pillows. Do your research, assess risks, keep safety in the forefront, have your doctor help you make decisions.

Judith Bluestone also recommends natural fabrics. She saw big differences in clients with the removal of carpeting from a home. Check the child's bedding; make sure it's natural. Cotton feels good. Poly and fleece may be itchy to some individuals.

I highly recommend Judith Bluestone's book, "The Fabric of Autism", even if your child has some diagnosis other than autism. She explains sensory neurology better than anyone I've seen or read.


NEW: Bill Nason's post about sleep is here.   
https://www.facebook.com/autismdiscussionpage/posts/1130255793720586

NEW: Dr Beth Malow, a neurologist, has a webinar about sleep online here:
https://iancommunity.org/ssc/webinar-sleep-challenges-autism
Learn about sleep studies and more with Dr Malow. Always rule out the medical causes first.

NEW: A Special Needs Guide to Bedtime by Karen Wang

NEWSleep Tip: Red Lights

NEW: http://special-ism.com/calm-your-childs-brain-to-foster-healthy-sleep/ 


And if you have any tips or hints to share about helping your children on the autism spectrum fall asleep and stay asleep, please share them in the comments section.

I am not a doctor; I do not play one on this blog. Do your own research into all the safety aspects, consult with your pediatrician, your autism specialists, before you even consider one of the ideas. Find a doctor who can help diagnose properly and treat, if needed. Don't try treatments on your own.

8 comments:

MasterpieceMom said...

Interesting. Our son is one of those who has trouble falling asleep unless he is with someone. Once asleep, we have no troubles. I'll have to consider, based on your info, what would possibly help him. Thanks!

Dani G said...

Such great information, Penny!!

PaintCrazy said...

My son isn't on the spectrum but his ADHD and sensory issues often seem to put him there. He has always had trouble falling asleep. A fan for white noise helps. He likes LOTS of heavy blankets even in the summer until he's asleep. He prefers his bed close to the ground - no frame. He used to 'hear' spiders crawling on the walls and was sure there was something between the walls (it was probably mice but I wasn't about to tell him that!). Brushing therapy helps as well as deep pressure message - both help him to relax. At 13 he's better at telling us and taking care of it himself. We also learned that "making" him go to bed never, ever, ever worked. We were better off telling him he could play in his room for 5 minutes (which was usually more like 15) and then he'd put himself to bed. Whatever it takes!

The Glasers said...

Taking my daughter off apples cured her insomnia . . .

Lauren said...

WOW! Hours of searching on the internet led me to your blog. I DESPERATELY want my 4 year old off clonidine. We have labs scheduled next week bc we have been fighting yeast for over 2 years. We just started a new stricter diet, and I already see HUGE progress. *One thing that really stuck out in your post was the laughing and giggling when wakes. He has done it since he was a baby, and he was DXed with severe autism right after his second birthday. He is doing it now as I type. I do not even think he knows he's awake.
Bless you for posting this.....huge answered prayer.
Lauren in Arkansas

TJ Bee said...

brilliant. lovely to read this. i'm so regularly seeing kids put on medications that are simply tired or on the wrong diet. we spent 13 years searching and finally linked diet with DS's issues. what a lightbulb and what a sad thing we didn't learn earlier. We did everything and it has been the biggest learning curve of my life. Irlen glasses, omega oils, different diets, behaviour therapy, counselling, in the end i gave into meds as that was the only way school would allow him. then i started homeschooling, changed our whole lifestyle and what a different guy I have today. He hadn't slept in years and was at the stage of becoming another statistic. did you know autistic kids are often missing the enzyme that process gluten and casein? it bypasses the brain blood barrier and causes all types of havoc. We learned the biggest culprit for him was 160b and msg.. thank goodness for the weeks and weeks of research and trying absolutely everything that ended up in us finding these things. thanks so much for sharing your experiences.. so encouraging to see others out there willing to give everything a go to heal their child. x

TJ Bee said...

brilliant. lovely to read this. i'm so regularly seeing kids put on medications that are simply tired or on the wrong diet. we spent 13 years searching and finally linked diet with DS's issues. what a lightbulb and what a sad thing we didn't learn earlier. We did everything and it has been the biggest learning curve of my life. Irlen glasses, omega oils, different diets, behaviour therapy, counselling, in the end i gave into meds as that was the only way school would allow him. then i started homeschooling, changed our whole lifestyle and what a different guy I have today. He hadn't slept in years and was at the stage of becoming another statistic. did you know autistic kids are often missing the enzyme that process gluten and casein? it bypasses the brain blood barrier and causes all types of havoc. We learned the biggest culprit for him was 160b and msg.. thank goodness for the weeks and weeks of research and trying absolutely everything that ended up in us finding these things. thanks so much for sharing your experiences.. so encouraging to see others out there willing to give everything a go to heal their child. x

Alexandra said...

Really great info. . . ADHD is likely an issue for multiple people in our family (me!) and as I read some of these things, it feels soooo familiar. I appreciate you compiling this info.

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