Autism & sleeping

Its 2am as I write this, with the Toronto Maple Leafs (NHL ice hockey) on radio via the internet, and England’s test match in New Zealand on TV. Just seconds ago, I could hear the thumping of running feet from upstairs. Given the speed of the thumping, it could only be Matthew. Another night with Matthew in with Jane & I. When I go up later, I’ll find out if there’s room for me, or if I’ll end up in Matthew’s bed. Given that its a cabin bed, it’ll be a task for me to get up to it!

Matthew is 7 now, and sleeping continues to be an issue for him. Before he could walk, Jane and I both thought how cute it would be when M could walk, and sometimes came through in the night, or first thing in the morning. That ideal soon became an altogether different reality. Matthew started coming through as soon as he was in a bed he could get out of. It would happen any time from 11pm to 5am, with no two nights being the same. Sometimes you’d just get off to sleep, and within half an hour would be awake again as Matthew arrived. Sometimes, he’d just creep in and fall asleep without disturbing us, but more often than not, he’d be suffering from night terrors, and it would be accompanied by screaming and yelling. He was still asleep, so it was impossible to get through to him, and it was difficult to decide if we should wake him or not. Needless to say, the whole household would be disturbed. When he succeeded in waking Daniel, it could mean up to an hour or more trying to get him to calm down, then another short while to get him (and Daniel at times) back to sleep. Over time, the lack of sleep took its toll, and Jane in particular is usually always tired. It left both of us so tired in the evening, it was all we could do at times to keep awake!

Matthew is often difficult to predict and manage at night. You know that he is needing the toilet, but toileting has been a major difficulty for Matthew over the years. He refuses to go for a wee, even though its obvious he’s bursting to go. Making him go can often result in a little paddy. Parents of NT children don’t even have to bother asking their kids to go to the toilet, but with Matthew, its a major exercise to get him to go. Imagine that at night when he needs to go, but has to be made to go, right in the middle of a meltdown, in the dark when its cold and we’re all tired. It became hard work.

But even now, although night terrors have gone, Matthew can still appear any time from going to sleep (he’s now been through as early as 9pm) until 5am. I can count the amount of nights we’ve had a full night’s sleep in the last 5 years on the fingers of my hands. Matthew is like us too though – he can be wide awake from as early as 4am. Eight hours of sleep for a 7 year old just can’t be enough to let him function at full speed. Its been suggested to us that we let Matthew stay up a bit later so he’s that bit more tired, so will sleep longer. Unfortunately, all that does is make sure Matthew has even less sleep than usual. If he’s allowed to stay up until 9 – 10pm, we’ve still seen him up at 4am – or earlier.

Settling down at night isn’t an issue for Matthew. He’s so tired by the evening, that when’s he’s put into bed, he’s quiet and doesn’t take too long to drop off – although every night he needs someone to stay with him to make sure he’s ok. It has the negative effect though of him being too tired to read effectively before bedtime. He manages to get through his homework, but reading is a real chore, and he’s often too tired to concentrate fully. So far, its not had too much impact on his school life, although a couple of times in P2, his teacher caught him on the verge of dropping off in the afternoon. All of the teachers he’s had have noticed he’s much less effective in the afternoon than he is in the morning. Matthew isn’t a great eater either at school, so afternoons continue to be difficult.

We had him referred to Sleep Scotland ( but have yet to hear anything back from them. We’re willing to try anything for Matthew’s sake as well as our own. Its grinding to go night after night with broken sleep. It must be the same for Matthew. All of us seem to be susceptible to catching a cold or other bugs, which I’m sure is a direct result of us being so worn down most of the time, weakening our natural resistance to the bugs most can fight off ok.

Sleeping can be a real issue for autistic children, which is certainly our experience with Matthew. We’d give anything for a week of uninterrupted sleep at night. But for until then, I’ll head upstairs to see if Matthew will budge up and give me room to sleep.


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