Can sleep deprivation ever really be good?

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?  

  • Generally that'd be my first approach.  But in his  case there's a deep mistrust of medical professionals that means he refuses to see them so, as usual, the problem remains locked within the family.  It's understandable, after so many bad experiences with mainstream professionals, but it means it's all on us to find answers.

    Mind you, i suspect that's often the case in neurodivergent families.  The system's not set up for us, many of us are misdiagnosed when we seek help for problems arising from being in a neurominority and co-occurring issues like hypermobility and EDS often go unrecognised for years.  

  • his bed maybe not supportive enough if he gets unaligned by sleeping. thats often the beds fault. he should try sleeping on the floor and see if the hard floor provides the support his skeletal structure needs while sleeping.

    and staying awake and longer at night is bad for me as for one at night i often think alot more for some reason and can end up in depressive thoughts, and id even probably more likely to put my foot in my mouth and do or say something harmful and self destructive. so it is better to just go to sleep in my case.

  • It might be worth seeing if he can see someone professional to help with this. I think you can get sleep centres so they might be able to help

  • Defo needs sleep. No sleep will burn him out. He'll be shattered, weak and likely get sick cause the immune system weakens with lack of sleep.  My mums got a sleep disorder and she's always sick because of this

  • Is there anywhere I can take longstanding, seemingly intractable problems like this?  Other issues (not in the same family member) include severe, chronic burnout, withdrawal (to the point of becoming a hermit) and very poor hygiene (rest assured that sensory issues have been explored, to no avail).

    I keep going round and round with the same stuff, year after year, and I fear I'm trapped in the role of carer for the rest of my life, without really understanding why.  It's all making me ill.

    But where can I turn to for robust advice and guidance?  

    (NB NOT counselling, which gives me a safe space in which to vent, explore my feelings and plan as far as possible but leaves the solutions to me - I don't have any and that's why I'm there!)

  • We have piles of slings, supports, braces, arthritis gloves etc.  All have only helped to a limited extent but much better while he's awake and in control.  Going to sleep means he loses this control, his body reverts to old patterns that end up causing pain, and he never wakes up refreshed.  He feels angry and upset and frustrated, plus disappointed in himself and in us that he was allowed to sleep for so long.  He can sleep through alarms quite easily so this gives him even less control in that situation.  What it means for now is sleeping during the daytime when we can intervene every hour or so, to make sure he doesn't get into a bad pattern with his posture.

    As usual, it all feels extreme and excessive.  Plus it still feels cruel to wake him up as he looks so peaceful sometimes.  He never wakes up that way though.

    We need help, it's true, but it would have to be the right help otherwise it'll simply confirm his learned belief that medics don't understand and will simply dole out the usual advice about, for example, avoiding caffeine or reducing screen time around "bedtime" (as if he even has a bedtime).  In fact caffeine seems to have the opposite effect on him calming him down (ADHD effect?) and the screens have been a saving grace to help with mood management when he can't sleep but everyone else is sleeping.  

    I have no idea how to safely break this pattern.     

  • Oh gosh that sounds so difficult. A specialist in hyper mobility may be able to give him supports/splints to wear which may help with the pain but like you said it will be hard to get him assessed if he doesn’t like medical professionals. Has he tried sports joint supports that you can get from Boots? Not necessarily to wear in bed but may help if he’s supported during the day

  • 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.  

  • 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

  • Exactly.  But how can this be managed so that it feels safer for him and he doesn't wake up in an absolute state?

  • No. A body needs sleep and sleep deprivation will catch up with him.