Published on 12, July, 2020
I'm puzzled. My adult son (autistic/ADHD) feels better if he doesn't sleep. The longer he's awake, the better he feels. And, when he is eventually forced to sleep because his body takes over, he feels really bad both physically and mentally - neck and joint pain/discomfort, feeling his body is misaligned and often very distressed and angry too, triggering lots of connections to past negative experiences.
Naturally all of this flies in the face of the usual advice on the benefits of sleep and he really wants information on either how to stay awake longer or do polyphasic sleeping so that he never suffers the problems associated with sleeping for too long.
To me this all feels like a very unhealthy relationship with sleep and one that is likely to be reinforced as he sleeps less and less and notices the benefits So how might I help him?
I think the first thing to do would be to try and find out what is causing him to wake up in pain. Does he need a new mattress? Longer bed? More pillows? Less pillows? Different shape or material pillows? Hopefully being more physically comfortable will help him feel more rested and better about sleeping
He's never slept well. Always been very energetic, a live wire even. As a child he always ended up staying up late and waking very early, becoming distressed about the situation if we tried to manage it via managing sleep hygiene as recommended by health visitors and then GPs.
He always had a vivid imagination too, becoming prone to nightmares. And, if he went for a sleepover, the other parents would inevitably report problems and apologetically make it clear they couldn't have him again.
Helpful remedies like melatonin, passiflora and valerian also failed to help.
He also found it very difficult to sit still at school then, after a massive growth spurt aged around 10, became more uncomfortable and even less able to sit still. He didn't tell us at the time, but now he believes that all the sitting cross legged in assemblies damaged his pelvis and posture. He started toe walking around that time too and, not recognising this as a sign of autism, we simply encouraged him to step into his heels. Doing this, without any understanding of the more extensive issues, caused more damage, he believes.
Since he always achieved well academically, no problems were flagged up by teachers. And we all (us as parents, plus GPs and educators) missed him being autistic/ADHD.
We've tried various mattresses but, after years of experimentation, he finds it easier to sleep propped up in a chair. If he doesn't do this, his pains flare up even more on waking. Sleep apnoea might also be affecting him, as he thinks there's an issue with his breathing becoming obstructed when lying down. However, he couldn't tolerate the CPAP equipment on his face for long enough to confirm this.
So... We're thinking possible hypermobility, and maybe we need to consult an expert on this. As well as a sleep specialist. But, even if we could find one, it would be hard to get our son to see them as he no longer trusts doctors to have the very individual answers he needs. He's used to things not working and has lost trust, preferring to tackle things ourselves. But, although we're really trying to help, we're struggling.