The Physical Aspects of Asperger's Syndrome
11. Insomnia, Stimming, and Sleep Problems
My Story: An Overactive Nervous System
When I was young, I always felt sorry for those who couldn't sleep, but I never thought I would be one of them. As a child, I would wake sometimes, but only when my asthma or bronchitis woke me up. My mom would give me medicine or a breathing treatment, and I'd go right back to sleep. Those days are gone. Over the past decade, my sleep patterns have slowly grown worse and worse. It began with taking a full hour to get to sleep. Now it's progressed to -- if left untreated -- unable to go to sleep, unable to stay asleep for more than ten minutes, and some nights, staying up until the sun rises. I know that there are many causes and reasons for sleep problems, but mine is autism body related, so that's good news for you. What I finally have found to work on me might also work on you!
I've never taken standard "sleeping pills" because of the well-known addiction aspect. Like all other problems I treat in myself, I wanted a better way. My doctor gave me melatonin, but that didn't work on its own for me. He added 5-htp to the equation and, most nights, those two did the trick. It was still hard to get to sleep, but at least it was possible.
The other part of this story is that I stim. I always have, even since my youngest memories at age three. At least it would be called stimming. Usually I play "air flute" with my fingers. Other times I move my hands or shake my foot. However, I have wondered sometimes if it was something else. This is because the definition of stimming doesn't match my symptom. They say stimming is self-stimulating behavior, in which you try to add to the total amount of stimulus your body is receiving. That's not why I move. I move because, the best I can describe it, is that I have uncomfortable energy building up inside of me and moving gets it out. This is why it might not be stimming, because the desired effect is the opposite of what stimming normally achieves.
As I drift off to sleep, I'm obviously trying to go to sleep, and I'm working hard at it. Therefore, I intentionally stop the "moving"; I quiet my fingers. Then, however, the problem "builds up" within me. It is seen a few minutes later as my arm begins twitching on its own. Now, I must work even harder to stay still in order to go to sleep. This is how it was for many months.
As I began the GFCF diet, my body began cleaning its build up of toxins and indigestibles out of my body. For a short time, this is making the tics and uncontrollable movements worse. A few weeks after I began the diet, I wrote the following (note: "bugs" is what I call the feelings that make me move uncontrollably):
"The past few years I've been getting little spasms or
something at night when I'm trying to sleep, which shock me awake. Or, if I try
to suppress them, the feeling builds up inside of me until I go crazy. I call it
bugs. I tell my husband "make the bugs go away", and he'll rock me in bed, or
quickly rubs his hands all over my body. That makes it go away, that feeling
that I need to move.
"This morning, EARLY this morning, it went too far. It's happening in my sleep!
Now that's just really not fair. I woke up at 5:00am this morning to every
muscle in my right arm burning with pain. As I slowly came out of sleep, I
realized that my arm kept going into full spasm/convulsions. I kept hoping it
would stop, and the pain would go down, and I could go back to sleep, but now
it's almost 8:00am, so clearly sleep won't be coming again this morning. I'm
really tired because like most nights, I didn't get to sleep until 1:30am,
because the bugs always keep me from going to sleep. The bugs have been keeping
me up for years, sometimes as late as 3am! Once I was awake I was
forced my arm still, then the bugs really built up!
[Note for visual reference: Recently I saw video of a very funny comedian
named Josh Blue on Disaboom, who has cerebral palsy. (Stand Up comedian,
VERY funny.) His right arm moves incessantly. When my arm was moving
by itself, it moved exactly like his does.]
Josh Blue
http://www.disaboom.com/Living/television/blue-magic-getting-to-know-josh-blue.aspx
Disaboom http://disaboom.com
"In the three years I've known I have Asperger Syndrome, I
thought these movements were what they call "stims", short for self-stimulating
behavior. But in the past week, since I'm coming out of denial, I've been trying
to learn more about myself. And the more I read about stims, I've learned that
sometimes that description doesn't apply. I do stim, apparently, but most of
what I thought were stims were this other spasming thing. I was even wondering
earlier this week if it was simple partial seizures, since sometimes my arm and
my foot on the same side of my body will move at the exact same time.
"Anyway, I never understood the term "stimulating", since my movements were to
get the bugs out, to get rid of the extra stimulation that was lurking in my
body. I never figured it out until this morning. All my life, I thought I was
making it all up, or just moving for fun, but doing it in my sleep, and until my
arm is killer sore -- well, that means it's real and I need to stop denying it
as well.
"Fortunately, for some reason the answer was easy to find on the internet. I
read descriptions, and it's not stimming, it's not Tourette's, it's not
seizures, but it is perfectly described by "tics". So, that's nice to know, at
least I know what's going on. Oh, and the other good news is that I think I
found a vitamin supplement that might help me with it! I'll have to run to the
store today to try that.
"Maybe this is a good thing. I've been trying to make the bugs calm down and to
solve my insomnia for years, it's very important to me. Maybe this will finally
help me figure it out. :-) Well, I'm going to go take some Tylenol
because my arm is still killing me and I can't type anymore. I can't believe I
hurt my own arm in my sleep!"
My dad then told me that he has Restless Leg Syndrome,
which can be genetic, and he thought our symptoms were similar so I should look
into it. He's probably right, it is probably very similar. I like supplements, so
instead of a prescription, I decided to start with those instead.
My research showed that I should take the following:
I take these every night, in doses tailored for my size and
age. They work on me! They are fixing the problem. I am so
grateful and happy that I found these things, and that they are available, so
that I can sleep at night.
I'd also like to mention that these supplements don't make me feel drugged.
I've taken the old antihistamines (before Claritin was available) that make you
sleepy. They created in me a very "drugged" feeling. GABA does make me feel
naturally sleepy, as melatonin does. Taurine does not make me sleepy in
any way. None of these supplements make me feel drugged.
Other Causes
One other published cause of insomnia or sleep problems,
especially in children with autism, is Reflux Esophagitis. I don't
experience this, but some people do. In this condition, stomach acid
takes advantage of the horizontal lying position and finds its way up to the
throat. It can be a very painful condition. If you or your child has a hard
time sleeping, you might want to look into this as a cause. Mild reflux esophagitis can
sometimes be treated with a glycerin-based chamomile tincture. My
favorite is Chamomile Calm, from the brand Herbs for Kids. Chamomile
neutralizes the acid and soothes digestion.
Another common cause, one which I have plenty of experience with, is allergies.
As I have mentioned, people on the autistic spectrum are not the most allergy-free
individuals. Sometimes nasal congestion, eye watering and itchiness, nose itchiness, and
other sensitivities can also delay sleep. Removing the allergen from the
environment or the diet helps. Medicine is also available for
addressing acute symptoms. For non-dietary allergies, I also recommend an air filter in
the bedroom, as well as keeping the bedroom and sheets clean. This can do
a lot of good in the direction of helping a person's physical problems diminish
enough to allow sleep.
Dietary Causes
Eating foods that the autistic
body can't process can also keep a person awake at night. Gluten is the
number one food that'll keep you up, followed by casein. Soy, eggs, and
corn can also do it if you're sensitive to them. See
Section 4 of this report
for a full list of dietary culprits. For me, I also found that
not only MSG, but also nitrites in preserved meat (bacon, sausage, lunch meat)
will also keep me up. (I lost a good night's sleep one night to learn that one.)
I figure these sleep problems are is my body's way of helping me know what I can and
can't get away with eating.
Other foods that can keep you up include white, green, grey and black tea, and
coffee; energy drinks and caffeine; chocolate; herbs such as guarana, gingko,
gotu kola, and ginseng. Some of these foods and herbs might need to be
avoided in the second half of the day, or even the whole day in order to provide
best sleeping results. Cod liver oil and omega oils should only be taken
in the morning and lunchtime to avoid conflicting with sleep. Also,
anything that gives energy, like B vitamins and acai juice can keep you up.
Some fruits, such as bananas and berries, as listed on the Feingold Diet earlier
in this report, can also keep a sensitive person awake. I didn't believe
this last one at first. However, I was routinely having a banana near
bedtime back then. Once I stopped doing that, I immediately slept better.
It was wonderful.
Unsolved Physical Problems
One other rule I've made for myself regarding sleep is that I need to take the time to address any physical irritations and problems before attempting sleep. This could include a stuffy nose, cold feet and toes, dry skin, itching, muscle soreness, indigestion, thirst, hunger, sore throat, and any other form of discomfort that might keep me from fully relaxing. Mental control over the body only seems to go so far. At some point, I eventually have to get up and fix what I should've fixed before bedtime. Stretching or doing some minor yoga before bed helps me to release the stress and lactic acid built up in my muscles throughout the day. A warm bath can also help the muscles and the body relax before bedtime. I also like to be sure I've had enough water to drink, though that is a personal preference. I like feeling hydrated when I sleep, and I feel it helps my kidneys do their job while I'm sleeping. However, I'm sure that for some people, the need to pee at night would be a hindrance to sleep and therefore not worth it. Find what's best for you.
Sleeping Environment and
Patterns
The autistic are a patterned and ritualistic people. At least, that's what they would say about us if we were a culture. :-) For some people, taking the time to perform the same nightly rituals are enough to calm the mind and prepare it for sleep. In addition, having a busy day, with little downtime from social activities can commonly overwhelm an Asperger's brain and make sleep elusive. Try to factor in some quiet time before bed for the brain to process and unwind.
Having a steady bedtime and waking time is very important to maintaining healthy sleep. A consistent bed and waking time allows the body's natural circadian rhythm to assist or take over in preparing the body chemically for sleep. For some people, this is enough, for others, supplements will be necessary.
To prepare the bedroom for
sleep, I recommend making the room as dark as possible. Every window in my
house has mini-blinds, but my bedroom is the
only room in our house that also has curtains. They're great-looking, but
that's not why I bought them; they have a purpose. They are thick, and
block out light. Any light getting to the body can tell the pineal gland
to stop making melatonin by telling it that it is not night time.
You want the opposite effect. Black electrical tape is great at covering lights on
electronics and the fire alarm in the ceiling. Also, cover the light on your clock, or
you can get a face clock that isn't illuminated. A white noise
machine can be very comforting to nerves, especially if you are bothered by
tinnitus.
Some people are sensitive to electromagnetic fields, even if
they don't consciously feel it. For these people, the solution is to turn off electronics in
the bedroom, such as computers. Especially turn off cell phones, or place
them out of the bedroom at night. If you have an electric alarm clock, you might want to consider moving it across the room, away from your bed.
Its electromagnetic field will encompass you if it's next to your bed.
Only you will know if your clock is bothering you or not.
Mental Preparation for Sleep
Last, but not least, be sure you've put your day to bed as well.
Personally, my brain is naturally most active in the evening. That's when I get all
my good ideas. I think of things I need to get done, things I want to do,
people to email, etc. I also love to read and learn a lot. I only
wish my brain worked so well in the mornings. I've learned that writing
down every idea and thought I have frees me from them. After they are
written, I know that my
ideas are safe, and that they will still be there in the morning. I no longer
need to keep thinking about them in order for them to still exist. This simple tactic goes a long
way to helping me get to sleep at night.
Similarly, I have to be sure to take some time to stop working before bed.
I need to take 30-60 minutes and be off the computer, off tv, not doing work
anymore, and letting my brain wind down. I like to read, or to rest and
meditate, but there are various ways that this mental preparation for sleep can
occur. Just be sure that if you're a person who needs to wind down,
that you take the time to do so.
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