Like a lot of people with an autistic spectrum disorder my son has difficulties with sleep. These have fluctuated wth difficulty over the years depending upon his levels of anxiety, sensory issues and toileting difficulties. In recent months his sleeping has changed yet again which was triggered by the difficulties he had starting school after the long summer break. This led to huge anxiety for him which contributed to many unpleasant symptoms including broken sleep.
He complained that he didn’t like sleep but we couldn’t work out why he seemed scared so we assumed it was because he was having nightmares. Though he is verbal, one of the difficulties my son has is to tell us about his experiences. Even with the gentlest of encouragement he is not able to explain what he is feeling or what has happened to him and sometimes he tells us things years after the event. As a result it can be difficult to work out why my son is behaving in a particular way so we try and look at what preceded his behaviour to find out any triggers. Sometimes we find a trigger; other times we don’t.
For his sleeping dificulties, it was fairly obvious that his fear started during a period of severe anxiety so we decided to get his anxiety under control as a first step. I spoke to his psychiatrist who adjusted his medication to suit his physical size; my son had grown and his anxiety medication had become less affective as a result. After a few weeks his anxiety became less and he appeared less frightened of sleep. However, his sleep difficulties remained and he continued to struggle to fall asleep until the early hours of the morning. Even when he did eventually fall asleep it then became difficult to wake him up and it wasn’t unusual for him to sleep till lunchtime! His sleep-wake cycle was well out of kilter and was similar to that of a typical teenager who sleeps late and wakes up late. Of course he is a teenager so it shouldn’t surprise me that he is behaving like one but we also have to throw into the mix his ASD as well!
The problem is that our days don’t revolve around the sleep pattern of an autistic teenager. He has a tutor coming in every morning and I have to wake him up in time for his lessons which usually start at about 10 in the morning. This has been really difficult and the only semi-effective way I found of waking him up was to gently talk to him every 15 minutes whilst opening the window and letting daylight and fresh air into his room. It would take an hour or two to get him out of bed and dressed and even then he was barely awake and struggled to focus on his lessons.
Our psychiatrist suggested we try various techniques and we did all we could to reestablish his sleeping pattern. We minimised distractions, quietened the house, shut down the computer and TV and set a regular time for bed. We tried blackout blinds, weighted blankets, sleeping bags and his favourite quilt covers. We even changed his mattress which did improve his sleep for a while but then his sleeping problems came back. It seemed to me that it wasn’t that my son won’t sleep but that he simply can’t.
We sought further advice from our psychiatrist who gave us a two week supply of melatonin to help him get back into a proper sleeping pattern. Melatonin is a natural substance that is produced in the brain and helps to regulate the sleep-wake cycle by inducing sleep. Unfortunately people with autism spectrum disorders (ASD) can have low levels of melatonin which is why many children with an ASD have difficulties falling asleep and/or maintaining sleep.
However, for two months he refused to take it. He was adamant that he didn’t want any more medication and to be frank I could understand his anxiety. I’m not comfortable with him using any more medication either but on the other hand his sleeping problems were having a massive affect on his quality of life.
I explained to him that it would be a good idea to try it for a couple of weeks and that it was only a very small amount of medication. He agreed and almost immediately his life has been transformed. From the first night onwards he fell asleep, stayed asleep and woke up refreshed and able to concentrate on his lessons. It is still hard work to get him up, like any teenager, but when I do get him up he is alert and energetic, something that I haven’t seen in my son for a very long time.
I’m just hoping that when this melatonin period comes to an end that his new sleeping routine continues because it’s so wonderful at the moment. Knowing my son is settled means I can settle myself and enjoy a good night’s sleep.
I welcome hearing about your experiences with autism and sleeping problems. Have you found a solution to sleeping difficulties? What worked for you and your child? I’d love to hear your thoughts on this topic.