Seeking Advice - Teenager Sleep issues

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.

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. 

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!)

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 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