Seeking Advice - Teenager Sleep issues

Hi Trog, just want to say thanks for writing this, as it has helped me feel so much better about my 16 year old's sleep pattern which is the same as yours and Mini's son He tends to go in cycles though and sleeps or doesn't, so that there is no set routine from one day to the next, rather a weekly cycle if that makes sense. He says he has always found it difficult to sleep a normal routine and when he was in primary school was constantly tired, but still couldn't get to sleep til 2am? He loves coding as well though and has been teaching himself since he was 8. I suspect he also finds it easier when it's quiet at night because he has a complex sensory profile across all his senses. He has acute hearing and sense of smell and touch and vision, so the world can be very overwhelming for him. As a result he started home schooling 3 years ago and teaches himself, and doesn't go out much. Do you have any suggestions as to how this may be overcome, as exercise is something that I worry he doesn't get enough of, even though he exercises at home and walks around his room a lot  

Hi Suzanne, thought it worth updating you as best i can with how my son has been doing throughout lockdown and more with his sleep issues. 

Our approach has been one of giving him full control, zero pressure. We explained the rules that we would like and our reasons to him but then passed over full control to him. No matter what choice he made we would support him. Each day is different and lockdown has created problems because Jaiden doesn't always have a reason to get up. He controls this now and I would say that 80% of the time he goes to bed around 2am and gets up at 12pm. He has alarms set and has even asked one of his online friends to call him each day at 12pm so they can chat and game online. He recognized the need for a reason and has got one of his friends to help and support this. He tries to help his friend stay calm on the games and shows him how to do things. This as parents reduced the pressure on our shoulders. There are other things now which have become obstacles to climb, for example, teeth brushing has really improved since he had his brace off but now personal hygiene is not happening. Last shower was 2 weeks ago. We know that if we point Jaiden on the right path, explain our reasons he will slowly start to do these things but as the timeline suits him not us. Patients and us being calm help him and giving Jaiden full control help us to better understand his needs.

I have now learned that as a parent I will always worry, currently worrying about Jaiden increasing his social group and meeting people, having a partner, but most of the time this is because I am a parent and not anything that Jaiden is doing. Its my job to worry.

Jaiden will also go on walks as he is so saturated with being in. The lockdown has been a positive in that aspect as he has seen how boring this can be at times.

Hope this helps.

Many Regards

Steve

Hi Minidonk - I have only used used this forum a couple of times and that was a couple of years ago but I have returned because of the near-identical sleep issues with my 16 year old that you are experiencing. I've found I don't need to tap out my problem now -- so lovely to see someone else has done it for me! And even lovelier to see the very detailed and very helpful response from @trogluddite .

Thank you @trogluddite - in fact when I was last on the forum it was you who then also provided some amazing advice. You're clearly a major boon to this community. I hope you know that!). So, like Minidonk I will print your response out and hope my son will read it and benefit from it. I'm already trying to throw Vitamin D down his throat at all available moments as I do worry about his lack of daylight exposure. And he too definitely benefits from outdoor activity but he will only walk, no other exercise at all is acceptable). He enjoys walking and I do too but it's very difficult to make sure he has a walk by going with him when his hours are so odd. Lockdown and winter make everything worse.

I am in danger of rambling. But, in short, I just wanted to thank you both. 

NAS66304 said:

we have a fairly lighthearted and relaxed view on the whole thing

Music to my ears! There are serious issues which sometimes have to be tackled, of course - but being far too dour all the time goes hand in hand with that "disorder" view of autism. I've had people react with abject horror when I've described some of the little tricks that my brain plays on me, for example; the way that I sometimes can't tell whether the hand shaving my face or its reflection in the mirror is the one that's connected to my arm.

But that's something which usually just makes me giggle! I've never known any different, so why would it freak me out? It's just a handy (excuse the pun!) example to use when I'm describing my sensory differences to people, because it's rather like the well-understood "rubber hand illusion" which is easy to find online. It's intended to be a bit light-hearted and silly - I'm not trying to suggest that I believe my arms get possessed by demons from an evil mirror-world!

Misplaced sympathy can be just as difficult to deal with as too little of it, and just encourages the development of a self-image as a "broken" person, and the feeling that certain things should never be spoken of. So long as its laughing with, not laughing at, a sense of humour about it is a great thing to have in the coping toolbox (even my absolutely cringeful puns!)

Thankyou, I really try to understand him, he is generall6 really eloquent in talking about stuff to me, we have a fairly lighthearted and relaxed view on the whole thing. I was so proud of the way he described some feeling when he was being diagnosed, I have the utmost respect  for him and have great sympathy for what the struggles are day to Day, he explains them to me in a way that is so easy to understand. It saddens me that Autism is considered a disorder, Yes there are emotional challenges and certain things that are tricky, but only because we are all judging it from a neurotypical viewpoint...who says we are right? After all some of the major discoveries or inventions or initiatives have been discovered by people who have autism. 

The only issues we have at present is sometimes a bit of eggshell walking when something within the house is not quite to his liking, My daughter suffers most as she hasn’t got the patience and has had to live as sibling to a  boy who occasionally requires special circumstances and attention and some demands seem quite ridiculous to a neurotypical. 

Thanks so much for your comments, nice to know that it might be the right root, when for years I’ve been so confused with how to deal with certain issues, being told to deal with things as you would maybe with a neurotypical child. So now I listen to him and try and find a way forward. Just want to help my daughter to understand and continue to be patient, really hard for her though. 

I absolutely had to return your kind compliments - it was delightful to read your enlightened attitude to your son's behaviours.

As I mentioned in my earlier post, my autism has "demand avoidance" traits to it; and you're spot on - being pushed harder is often very counter-productive. It just adds to the powerful anxiety that's at the heart of these traits, and  it can just lead to a feeling that you've already failed before even starting, whatever you might do, and that you "might as well be hanged for a sheep as for a lamb". My need to feel that I have complete autonomy is very strong indeed, even though I know it is often an illusion in practice. I have to feel that it was me who made all the decisions (even if there has been a bit of psychological subterfuge behind the scenes!)

This can be a problem sometimes when it comes up against executive functioning problems - much as I like to make all my own decisions, I'm not always very good at it, and I could win an Olympic gold medal at procrastinating and dithering. But again, the key is to work as a team to devise strategies to overcome this (for example; before and after photos of tasks I should do, so that I can see my achievements, and one-at-a-time notifications on my computer, work a lot better than overwhelming itemised lists).

Irresistable force versus immovable object is usually just a recipe for frustration on both sides!

Your son is a fortunate lad, indeed!

Hi there,

I’m really new to this sight, but feel I had to reply to you as it sounds like the same troubles we have in our house, my son has never really slept well and there are times when he is completely nocturnal, I used to worry loads and try everything to ‘right the wrong’ but actually I’ve realised it’s only wrong in a neurotypical mindset, I loved Trogluddites post, that could be my son talking, so brilliantly about the reasons why night time is better for concentration etc, my son ‘rights’ himself regularly if he’s got college or something else he needs to do the next day, often he’s thought he’d be okay but hasn’t been with lack of sleep, but sometimes,  as Trogluddites mentions, he can survive on very little sleep, he’s happy, I’ve now left it to him to organise his sleep pattern, he’s 16, it’s like homework, as soon as I leave it to him, to do (or not do)  he calms down and it ceases to be an issue. I know all people are different, but that’s what worked for us, he sets his agenda and he’s a lot calmer and content. I have realised that my son knows exactly what he is capable of, he is high functioning ASD, he knows his limits, he knows what he’s good and bad at, he knew what he needed to do to achieve good GCSE’s, he didn’t need teachers, parents nagging him, calling meetings about lack of work etc when it came to doing the exams, I could see he was struggling with interference from other people, so I stepped back, crossed my fingers, didn’t say a word, and he did well. With sleep, I used to worry myself stupid, but now I trust him to know his own body and sleep when he needs to, he doesn’t let it get in the way of college (which he likes) sometimes I  say I think he will not last the day and I’m generally right, so he missed some college, but they understand. It’s not perfect all the time, but he’s getting there. 

Hope me this helps a little bit

Minidonk said:

He will then stay wake all night and some times all days the next day as well. He is suffering a lot with Insomnia and this is causing all kinds of problems with his routine.

I caution against medicalising everything, although your son is autistic all of his behaviours and actions won't be due to his neurotype or necessarily an issue. In the same way that everything you do isn't caused by you being a PNT - your socialisation, human nature etc all come into play.

As a university student, the lack of routine, accompanied by the drive to stay up late into the night, caused widespread insomnia across my halls and then again the student's houses. At this stage, it comes across as though your son's is demonstrating normal behaviour for his age and lack of day time demands.

When mine and my friend's routines changed the first couple of weeks of getting used to going to be and getting up early at a set time was tough but we all adjusted in a few weeks. If I were in your shoes your son's anxiety around the change in routine is the challenge I'd be focusing on. If it affected primary school and now secondary if your son doesn't develop effective coping strategies this may mar his college, and if appropriate university experiences too. 

No problem Mini, happy to help.

If your son is getting ready to start college, or preparing for it, then I'd suggest trying to get an emergency referral from your GP speed the process up due to the insomnia. The argument being, you can't exactly afford to have your lad go to college whilst also adapting to new medication, that's essentially setting him up to fail or struggle. Better to get this nipped in the bud, so to speak. 

Hi Lothian Tam, my son has ASD. No ADHD or anything else diagnosed. My so is happy with his routine but we have cautious that he push's himself a little in preparation for College which he is keen to attend. We are all to aware of how easily he can build a routine that will become difficult for him to change later down the line.

We have been to see a doctor but in the UK only pediatricians can prescribe Melatonin. Our one is currently a waiting list of 6months! and we are on the list so we can at least try that at some point. We will be guided by our son a little bit if we are to go down other sleeping medication route as we wold like to (hopefully) guide him and give him the best tools so he can settle this in the best way that suits him. 

Thank you so much for your reply. All the information that we can absorb just helps us as parents make better decisions on how to guide our son.

Hi Trogluddite, we have spoken with our son and tried to create boundaries whilst also giving him full control of his sleeping. We have discussed the need for vitamin D and said that it's his choice we can either compensate for the lack of vit d through tablets or he needs to have time in the sun. Fingers crossed this then encourages him to exercise a little more. Your guidance has helped us as parents chill out a little bit and we have given our son full control now. So thank you so much.

Hey Mini, speaking as a high functional myself, I can relate extremely well with your lad. Insomnia for whatever reason dogged and still dogs me, and I'm pushing towards thirty at this point, not to be all doom and gloom, but there's really no easy fix in place. 

Couple questions, beyond the autism, has he been diagnosed with anything like ADHD or similar strains of that syndrome? 

Being out of schooling, has he managed to set himself a routine that suits him, or he slid into by chance? Eg, say a period of a couple months of this sleeping late and burning the candle into the early hours? 

And lastly and probably the most obvious, had he saw anyone in regards to medicating the sleeping issues? Personally, I was on melatonin tablets for nearly twenty years straight, helped slow me down and eventually get me to sleep, but again, waking up is quite the pain with these. All natural these things, the tablets, but they'll only work for so long before he'd adapt and need a weeks break to gain the benefit again. 

Heh, reading this back after writing, it almost seems like I'm pushing tablets, no. Again, this all comes down to whether he's been seen to treat the apparent insomnia, if he isn't, then yeah, problems are bound to happen. Apologies if this post is a bit disconnected here and there, but I've been awake since, say, six last night and it's pushing twelve in the afternoon, ain't not easy fix when it comes to this stuff I'm afraid. Really screws with our attempts to create a routine and lord knows us Aspies don't like that.

Tl;dr: Sleep meds might be the best course if they aren't already been tried, nothing hard like Benzos to start with though, unless that's the route the psychiatrist suggests. But even then, I'd be a bit wary. 

Thankyou for your kind response - it always lifts my spirit to hear that my ramblings have been found useful by someone. Just as you said of your son, the forums have been a huge boon for letting me know that it's not "just me", so I feel that it's only right that I do likewise when I can.

FWIW, I think you're most likely right about the medication option. Even when something seems to have been effective at first, just one late night for a special occasion can put you right back where you started. As you say, finding ways to minimise the impact of it which can be sustained is much better in the long run than the false hope of a quick-fix.

The one exception to that which I do make is to top up my vitamin-D. A lot of people have low levels, especially in winter, because the usual way to get it is from exposure to sunlight - but obviously, that's a bit more of a problem for us night-owls (click here for the official NHS recommendations). It can also be especially important if you have a sleep disorder, as vitamin-D is used for making some of the brain chemicals which regulate sleep.

I also can't stress enough how much difference a bit of excercise outdoors in a nice, quiet place can make. Aside from the obvious benefits of the excercise, there's something about a bit of greenery that seems to perk up a lot of autistic people even more that it does most other people (a bit like the common affinity for animals, I guess - it gets our mind further away from all those icky "human" complications!)

Wow what a fantastic response that I'm not sure I can put into words how much that helps. I have shown this to my son because what you describe is him to a tee and its good for him to know that he is not the only one. Both myself and my wife have read this several times! We have discussed going down the medication route but where possible we just want to give our son the emotional tools to cope with this and all our support we can offer. As a direct response to your email we have changed the rules of the house to better help him and recognize his needs more. Thank you again. Your response can not be put into words how much its helps us. 

Welcome, Minidonk.

I've not been active here for quite a while, but when I saw your post, I felt that I had to reply, as what you've described is so familiar to me. Your description of your son could so easily be a description of a teenager with whom I'm extremely familiar - that is, my younger self! (I was diagnosed with ASD, including likely PDA traits, a few years ago in my forties).

There may be a few things in play here, and I think that you're correct not to jump to the conclusion that depression is the cause (or at the very least, not the only cause).

Firstly, there does appear to be a high occurrence of sleep disorders amongst autistic people ("sleep disorders" is maybe a slightly contentious term, but I use it for convenience). In particular, what is known as "delayed sleep phase" seems to be particularly common - where a person's body-clock just won't synchronise with normal daylight hours, so that getting to sleep and feeling ready to wake are several hours behind what's normally expected. This can affect other things, too; such as when one feels hungry or is best able to concentrate. My own experience is that my brain simply won't "shut up" until it's good and ready to at about 3-4am, and trying to get to sleep any earlier simply leaves me staring at the ceiling, my head buzzing with thoughts (not necessarily anxious ones), getting ever more frustrated that my brain won't just turn off and let me rest. Such frustration doesn't exactly help, either, of course!

So I would ask you - when he is allowed to follow his current sleep patterns, does he get enough sleep, and does he feel rested from it? I find that I usually do, so long as I'm not forced to fit myself around other time pressures. I have come to expect that, when I have school or work to attend, I will simply have to turn up after only 2-3 hour's sleep, or even none at all, pretty much every day. One sign of delayed sleep phase is that the sleep deprivation from this makes little difference - you might expect that it would lead to simply keeling over from exhaustion, but I don't get to sleep any easier no matter how many days this goes on for (and an incredibly long "catch up" sleep at the weekend isn't always enough to recover fully). The sleep deprivation does, of course, make dealing with other people and situations much harder, and can compound whatever other difficulties autism might cause - I was always rather prone to running away and hiding, as you've described of your son, because it lowered the threshold at which my brain would say "that's enough now". Giving up and going "around the clock" is also well known to me; I still kid myself that it might "reset" my body clock, but in reality, it rarely achieves very much.

Delayed sleep phase might be made much worse during the teenage years. It's pretty much accepted now by the scientists who study these things that nearly all teenagers experience a lag in sleep phase due to hormonal changes etc. Don't discount that he may have always had a sleep disorder, but that's he has been able to cope with it until puberty tipped the balance. As a young child, I became extremely good at concealing the fact that I was awake when I wasn't "supposed" to be (within a couple of weeks of moving into a new house, I know exactly where all the squeaky floorboards are!) The "masking" by which we attempt to hide our autistic traits isn't always for daylight hours only.

However, the problem may not be entirely a physical thing. The night-time is very appealing to some autistic people with PDA or who have extreme sensory sensitivies. It is peaceful and quiet, no-one will be making demands, the phone will not ring, there will be no visitors, and so on. I have been a keen programmer since childhood, and I write all of my best code in the early hours, when there is nothing to disturb my concentration (I am very sound sensitive) - and better still, there's not even the slightest threat of being disturbed playing at the back my mind. I have spoken with many autistic people who are "night owls" at least, if not outright nocturnal (I have been nicknamed "the vampire" by relatives of my landlady!)

Dealing with this may not be easy, I'm afraid to say. As you may have guessed by now, the situation is much the same for me in middle age as it was when I was a teenager (likewise for my Mum, who is in her 70's, with whom I share many traits). I have had a little success with the atypical anti-depressant Mirtazapine, and some people respond to the "jet lag" medication Melatonin. Of course, the usual caveats about only doing this with a doctor's advice apply, and everyone reacts to these medications differently; but I would certainly consider a visit to the GP if your son is willing to try this approach. However, other effects of such medication may be less welcome (I stopped the Mirtazapine because it messed with my concentration).

The ideal approach, from my experience, would be to allow your son to simply follow what comes naturally. However, the demands of the outside world don't exactly make this easy - one has to shop when the shops are open, and work the hours demanded by one's employer unless free-lance work from home is a possibility. There is some evidence that in other societies, this is accepted as perfectly normal (Bediouin sheep-herders much appreciate someone who gladly stays up all night to watch the flocks) - but sadly, the modern, Western world is rarely so accomodating, so a compromise of some sort must be found. Most important of course, is that you continue your compassionate, loving acceptance of his differences, as amply shown in your post - accusations of laziness or indolence will do nothing to make a sleep disorder any easier to live with.

Best regards to you and your son.