Our Troubles with Sleep: The Autism Files

Many children and adults with Autism Spectrum Disorders (ASD) have trouble with sleep (60-80%). They can have trouble getting to sleep, staying asleep and sleeping for a decent amount of time. They can have trouble with sleep-walking, sleep-talking, teeth-grinding, thrashing about, nightmares and night terrors. The list goes on.

My son, who was diagnosed with autism at the age of 3, has had trouble with sleeping all his life (he is now nearly 14). He did sleep well for the first two nights after he was born when we were both in hospital. But on the 3rd night (when my milk ‘came in’ as they say) the crying began and my baby would not sleep like the other newborns. The nurse kept coming into my hospital room to see what the problem was. All the other newborns were sleeping soundly; they seemed to only cry when they were hungry. After hours of disrupting the ward the nurse took my baby to the neonatal ward so that I could get some much needed sleep.

Those early days were a sign of what was to come. It’s not uncommon for parents to have problems establishing a good sleep pattern for their babies and toddlers, but eventually most children sleep through the night without waking their parents. This was not the case for our son. He had trouble sleeping for more than an hour during the day, without waking up crying, and he would wake several times during the night. Sometimes during the day when he was having a nap he would wake, not just crying, but screaming as if he was being murdered.

We took our son to a sleep clinic for babies and toddlers, as well as the paediatrician to rule out physical problems. The nurses in the sleep clinic helped us develop a good sleep routine; the paediatrician diagnosed reflux and prescribed some medication which helped settle the baby. But still the sleep disturbances continued.

I went to bed every night expecting to be jarred awake with the sound of crying or a scream. Without fail I would be woken and I would get out of bed, zombie-like, to see what was wrong. He would settle back to sleep after some strokes of his head and a few cuddles. It was like he wasn’t really awake at all during the whole episode.

My son’s sleep disturbances took a toll on our family – my husband and I and our young daughter. Being woken most nights is very disruptive to the sleep patterns of all members of the household (unless there is a very heavy sleeper who never gets woken by noise).

I was beyond tired in the daytime and eventually I also was diagnosed with a sleep disorder. I spent a night in a sleep laboratory hooked up to wires and electrodes which showed, (surprise, surprise) that I wasn’t getting enough deep sleep. The doctor looked carefully at the graph that tracked my sleep stages and raised his eyebrows, saying ‘this is very interesting’. But anyway, that is another story, possibly involving chickens and eggs, and other philosophical musings.

My son’s sleep did improve significantly when he was about 9 and our family savoured peaceful nights. We began to get enough sleep ourselves and the anxiety and feeling of dread associated with night-time began to fade away.

But then we had our son’s first school camp when he was twelve. He was away from home for 3 days and nights of outdoor ‘fun’ – you know the drill – ropes courses, raft building, swimming in a dam type thing for school children. He loved it and he hated it and his anxiety went through the roof for several months after the camp. Along with the anxiety came our enemy, sleep troubles. Yes, waking during the night returned and decided to stay for the duration.

Arrgghhhhhhh!

This time I’d had enough so we went to the paediatrician and got a prescription for Melatonin. Melatonin is a hormone found naturally in humans and other animals (made by the pineal gland in the brain) which regulates the internal body clock of sleep and wakefulness. Studies have shown that melatonin is effective in improving the quality of sleep in children with ASD and those with intellectual disabilities.

We give our son melatonin every night, about an hour before his bedtime. His sleep improved straight away with the use of melatonin and his mood improved during the day (we assume as a consequence of getting enough sleep). He still occasionally shouts out or talks loudly in his sleep – about an hour after he falls asleep – and I go into his room to see if he is alright while settling him back to sleep. Sometimes he yells out and comes hurtling out of his room in great distress (sleep walking). He rarely remembers these episodes of what could be called sleep terrors. But, these days he nearly always settles by the time I go to bed at around 10.30pm and he sleeps soundly for the rest of the night. On those occasions when we have run out of melatonin his sleep problems have returned.

This is my families experience with a child who has ASD and problems with sleep. Other families have it much worse (eg. children who only sleep a couple of hours a night) and others have ASD children who have only minor sleep problems.

The reasons for the sleep disturbances vary. They can include sensory issues, melatonin regulation by the body, anxiety, stress, hyper-vigilance, hyper-activity, cognitive overload, and other factors.

The strategies used to treat the sleep disturbances also vary and parents may need to trial different techniques and have huge amounts of patience before they get any success. Some beneficial strategies have included the use of weighted blankets for children with proprioceptive issues, relaxation exercises and music for those with high levels of anxiety, a good predictable sleep routine, melatonin and other medications. I will discuss these issues further in a separate article.

One thing we know for sure is that good quality sleep is essential for well-being in all humans and increases the ability to concentrate, to feel relaxed and to be mentally alert.

____________________

Note: In Australia you need a prescription for Melatonin but not in the USA. Beware of products that mention melatonin in the name but which do not contain the active ingredient (eg., homeopathic melatonin).

Note: Photo by Lisa Crook

8 thoughts on “Our Troubles with Sleep: The Autism Files

  1. This is so interesting. And heartbreaking – particularly, the after effects of camp. Sensory overload? Perhaps this is the overall issue with sleep deprivation, too. Over-firing neurons, like too much electronic-gadget stimulation that neurotypicals suffer from these days, only in ASD people, it’s a natural process of overstimulation.

    1. I definitely think sensory overload has a lot to do with insomnia for many people. The boy took a long time to process the camp – he kept wanting to talk about it – he found the other boys to be very noisy and disruptive, especially at night – there was one kid who had smuggled in a lot of junk food and he wanted to stay up all night talking and eating his snacks – Michael was not impressed. He also found a lot of the activities quite challenging (in fact I would too – should have seen how high they had to climb up poles and the like – scary stuff.)

    1. thanks Charles – it sounds terrible when I write about it, but we had just as many good things happen so it all evens out really – we are a very lucky and well off family in many ways.

    1. thanks Kate 😀 There are so many things you can do for sleep issues – getting informed and some help from professionals is always good if you can – not many problems of this nature are unsolvable.

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