Sleep pattern changing....

Hi son is 9 with what I beleive is undiagnosed ASD... still attempting to get diagnosis.

Along with a host of symptoms that I won’t go in to on this post he struggles with sleep. This has been evident for years as he would struggle to switch off at night, l also suffers generalised and at times specific anxiety.

normally this is combatted with the use of a night light, ceiling fan and playing music.

However recently and especially during the holidays he has been struggling with his sleep, being out of routine hasn’t helped so I’m aware that this could be the main culprit. Even before Christmas break I realised on some mornings that when awakening I was finding him asleep with his iPad and headphones on, obvisouly getting up during the night and switching iPad on. 

It is becoming more of an issue, I’m wondering whether to take iPad out of room at night although iPad is parental controlled and he doesn’t gain access to live play etc. I’m worried that it over stimulates him more.

last night we tried audio books but this didn’t work I also lay with him which can usually settle him but no and I put his iPad across the room, but at some point during the night he used it, I found him asleep this morning again with his head phones?

when asked why he uses it he says because he ‘ feels lonely when he wakes up from his dreams’ ?, L struggles with dreaming, when young claiming he didn’t dream?

we are attempting to establish more of a routine and get him more active to try and help, he’s only getting a couple of hours sleep a night at minute or if he goes to sleep it’s broken..

What do people recommend, should I remove iPad and make it a rule, he doesn’t read either so not an option either.

Im hoping getting back to school will help but I noticed on a couple off occasions this was occurring then too.

thanks tracky.

Parents
  • I realise my comments here are a little late. I wrote them several days ago but couldn't post them, as my iPad, or internet, or this site, or something, was playing up, so I couldn't post my response. I've got access to the site again now so I thought I'd post it anyway. It might give you some insight as to why he's using his iPad. You're doing the right thing though. Attempting to establish more of a routine for sleeping. I've been attempting this for several years now and finally, with the help of my support worker, I am slowly, very slowly, getting somewhere. Although my hard work and attempts, have resulted, so far, in what looks something far from anything that resembles a routine, yet. But I'm getting there. Although I'm sure that if I told someone, my son, for example, that I was 'getting there', they would think I'm insane, because to them, my days, look very similar to the days that came before them. But I know I'm getting somewhere, and so does my support worker. 

    Hi tracky. Since using this mood ap, that I have on my phone, I've  started to take more notice of my sleep patterns/disturbances.

    I noticed that over the Christmas period, my moods were totally erratic. Then a little after the new year, I noticed that my moods had suddenly stabilised, significantly. I then realised that my sleep pattern had changed completely. It’s like at some point, over that Christmas period, I lost the ability to even think about going to sleep at night.

    It’s like I don’t want to go to sleep, and I don’t want to wake up. But at some point, one or the other is going to happen. And I live in dread of them both.

    I’ve also realised, over the past year, I have been spending more and more time on my iPhone or iPad. Often falling to sleep with it. With or without my headphones.

    I started to realise, how all of my other coping mechanisms, have faded away. I rarely listen to music. I used to listen to meditation music. I used to light candles and relax. I used to take long baths. I used to meditate twice a day, for over an hour at a time. I’m a vipassana meditator yet I can’t remember the last time I even thought about meditating.

    I follow my instincts. I always have. I had to. I don’t understand your world. And you don’t understand mine. In 2015 I could barely breathe. I was working as a social worker for the local authority. It was the first time I had ever taken a local authority job, direct with them. I’ve always been an independent social worker. But when you work for yourself, you can’t always guarantee you’ll get a job where you want to live. I wanted to be in my home town. for a while. So I took a 12 month temporary position with the local authority.

    Before the 12 months were out. Before they had even started. I could barely function. But I did. And I did a relatively good job.

    But I was dying inside. I could barely breathe. The only thing I knew for sure. Was that I needed to be in nature. I had to be in nature.

    I took myself off to Bali. And to some degree, I was revived.

    Coming back to the uk, has been truly enlightening. Life is always and forever enlightening. Either through the body, or through other people and outer circumstances. But getting access to what I need, whether I consciously know what I need or whether it’s instinctual. Is sometimes very tricky.

    Often, I have no idea what I’m doing. But somehow, I seem to get through it. Through life.

    However. For many years. I have followed Ayurvedic principles in my life. One of them is you always sit down to eat, in a quite place. You don’t rush your food and you most certainly don’t watch television while you’re eating. I don’t have a television, so I don’t do that. But I realised, that I haven't been eating, unless I am watching something on YouTube.

    All of this might seem insignificant to some people. I could go into even more detail. But basically, as soon as my sleep pattern changes, something significant is happening.

    I have only just realised this, so I haven’t got all the answers. But often, I feel so alone, I can barely believe it. I don’t want to believe it. When I feel like this, I neither want to go to sleep nor wake up.

    It’s like my life is swinging between the parameters of the two. Swimming from one side to the other. Sometimes I’m drowning. But my saving grace for the past 12 months, has been, my phone and my iPad. They’ve been my life rafts.

    Never before, have I lived like I’m living now (actually, I have). But from being a child, there has been a gradual progression to get me to where I’m at now.

    I process the world differently to you, and so does your son. I bet you process things differently from your husband, or friends. But some how, you manage to understand each other. We don’t. Not you anyway. We can understand each other, but that doesn’t necessarily mean that we can communicate effectively to you how we feel, how we see the world or how we process it. And if I tell you how I see the world, it might not be as your son sees the world. Just like you, we’re all different too. But there are some similarities. Between autistic people, between neurotypicals, and between both sets. But it still doesn’t explain why we do certain things. Like melt downs, sleep disturbances or needing our iPads. But seriously. I have seriously needed my iPad these last few months.

    Slowly but surely, I am spending slightly less and less time on them. But I’m only able to do that, because I’m finally getting some support. Some support that actually works. I’m feeling safer.

    At present. Even the mildest of interactions with the outside world, or even with my body. Is almost more than I can bare. But if I don’t swim, nobody is going to save me.

    I have to at least, stay afloat. All the tactics that I used to use, such as freaking out, melting down, refusing to do things, went long ago. I’m not saying I liked behaving like I did, or that I had any more control over it, any more than any other little two year old girl has. But I’m the same now as I was then. I’ve simply learned to control the impulses to melt down. To control the meltdowns etc. Or so I thought.

    Instead, I’ve been slowly slowly killing me. Or so I thought. But that doesn’t make sense. Our bodies, will not, let us wilfully kill ourselves that easily. It takes time and effort to kill your self. But if I wasn’t killing myself, what was I doing?

    Every time I kicked and lashed out. Every time I said I hated you and I ran away. I was really saying. Please. Please help me. I love you more than words can say.

    But I didn’t know I was saying that. But I knew I wasn’t doing what you were saying. I was so alone. So scared. A little girl. All alone. I didn’t know reality from imagination. But I didn’t know that either. But I realised, eventually, that there was a difference. But even that, turned out to not be true.

    We see, feel, hear, smell and process the world differently to you. That’s significant. I have said it before, that we speak different languages. You and I. We have to. We see the world differently. But we understand each other. When I talk about ‘we’. I mean me, of course, but also, I mean, autistic people, generally, because I’m autistic. And when I say you. I don’t mean you personally. I mean, non autistic, non disabled people, generally.

    I understand your son. All the changes have been coming at him like wild fire. So much so, that even his trusted coping mechanisms seem to be failing him. Without even realising it, no doubt. Our language is more instinctual. It can’t be neatly translated into your language. But he’s scared. He can barely process one change when another one is coming at him. I’m still processing stuff that happened almost 50 years ago, as if it happened only yesterday. It’s almost as vivid and as clear as it was back then and sometimes it is as vivid and as clear as it was back then, sometimes even clearer. Yet I can’t remember when to eat, or sometimes even how to eat. I sometimes long to eat my food off the floor like a dog. Not because I don’t think I deserve to eat off a plate, but it’s because it’s so damned hard to eat off a plate. What with everything else going on as well. It’s like I want the world to stop. Just stop for a minute. Let me catch up. Let me catch up and process all the years that have gone by. All the parties I never went to. But I couldn’t tell you why.

    Now I’ve discovered your language. I barely want to use it. I want to go mute. I want to look you in the eyes and not talk. Not ever. I want to rip a live animal apart, with my hands and teeth, and eat it in front of you. With blood dripping down my face. But I barely dare to even look at you.

    So I hide. Behind tears and tantrums. Not knowing what the hell is going on. But the tears and tantrums only last for so long.

    And then what? We turn within. It’s the same lonely and confusing world. That we lived in as children. But this time. We’re in a grown ups body.

    I know we process the world differently to you. But I only found that out recently. Because all along, I was trying to live in your world. With your language. And in the mean time, I was losing more and more of me. But I didn’t even know that.

    Seen through your eyes, we live in a different world to you. Because we behave differently. We have these melt downs and stuff. And as such. We start believing there’s something wrong with us. But we don’t know what. We can’t tell you. We honestly can’t tell you.

    I do know, that you share with each other, a level of connection, that we don’t share with you. I honestly didn’t know it existed. But now I know. I’ve got a better understanding.

    But right now. Your son needs that iPad. That much we do know. He could also do without the stress of thinking he’s doing wrong, by going on his iPad. What will he have, if he doesn’t have that? His other coping mechanisms have failed him. He needs something to balance him out in this world. I’m not saying this is a long term solution. Nobody wants to spend all day on a computer. Trust me. My head is already like a computer. Working out all the variables in all the interactions. And having to come up with something. Quick. People always want quick answers. The more I learn. The more people seem to expect from me. Not realising. Even if I tell them. That I’m just a little girl.

    And one, that sees the world differently to you. How do you explain, a 50 year old woman, who had a career as a social worker and travelled to other countries, by herself, not even knowing where she was going, most of the time. But who is now, unable to know, what to do when she opens her eyes in a morning?

    It’s the changes that are unbearable. You think he’s struggling with the change in routine, because of the holidays. But he’s struggling to process his world. It’s all happening too fast. I’m not saying enable him to be on his iPad forever. Let him go on it. Reassure him that’s it’s ok for him to be on it. That you understand, that it is somehow helping him to process the world. He might not even know what you mean. I can’t know that without talking to him. But let him know it’s ok. It’s ok for him to go on his iPad. Help him to feel safe. That it’s ok. Try if you can, to help him to discover what other things might work for him instead, and why.

    For example. Tonight, I discovered that I can tolerate drink better than I can food. I only drink hot water, and I realised tonight, that at the moment, I can do one or the other, but not both. And I can do fluids better than solids. For so many reasons. So now, I’ve got a chance of getting some nutrition into me more regularly. Even if it’s only by the way of smoothies. Which will give me more energy, less pain, less medication, and better sleep. Over a period of time.

    What I’m trying to say. Is. Your son processes the world differently to you. I haven’t got the answers. I’m still learning. But what works for me. Is when I have absolutely no contact with the outside world, or even with my body, for at least a good few days. I begin to spend less and less time on my phone, when this happens. It’s as if, when I start to feel safer. Less under attack from outside stimuli. I can begin to spend a few minutes, without the iPad, without feeling stressed. What could make him feel a little safer?

    For example. I found this site. So I no longer feel so alone. And I can start processing, what’s actually going on. But I need space to do that. Whether I like it or not. What I like, doesn’t come into it. Somehow or another. I need to feel safe and get as much time as I can, by myself, to process stuff and time on my iPad to help with the crippling anxiety I’m barely even aware of, most of the time. And with as little contact with the outside world as possible. From there. I can start building other things in. For example. If I have enough time to myself, I start wanting to go outside for a walk. Currently, this is only happening on a night time. And I’m not strong enough to go out walking just yet because I’m not eating regularly. But the big difference is. I keep getting a taste of fresh air. It’s calling me. Just when I think it’s gone. The outdoors. The fresh air. I hear its call.

    Nature is my medicine. But even getting my medicine, is a struggle right now. And that’s ok. My support worker reassures me, that that’s, ok. He needs to feel safe. Heard. Even if he can’t tell you why he needs his iPad so much.

    It doesn’t matter which way I look at it. It comes back to this. When life gets too stressful. More than I can ordinarily cope with. I shut down. I start shutting down parts of my brain. It’s like I become this wild animal. Hunting like a savage, in the wilderness. Only it doesn’t make sense at the time. Not even to me. But it’s like day and night. Waking and sleeping. I don’t want to change from one to the other. So I get on my phone. And I feel so relieved, when I notice it’s dark outside. It’s like a sigh of relief. I’ve got through the day. And nobody is likely to contact me now. And I can ignore all emails. Give me my iPad. Let me watch a black and white movie on YouTube, to celebrate, getting through the day. Or let me happily research more about Henry Ford. Anything. But face the day.

    I don’t want the world to stop forever. Just for long enough for me to catch my breath. And organise everybody. And everything. Just as it should be. And not let anybody change or move, unless I’m ok with it.

    I was trying to find out what was wrong with me. I was asking the wrong question. I should of been asking, what do I love to do? I have no idea. Well I have a bit of an idea now. And I always did, at certain times. But then all this other stuff got in the way. All these changes started to happen, and again, it starts all over again.

    My difficulties started before anyone really noticed. Even though I had already been admitted to an isolation ward, where I stayed for three weeks after I stopped functioning. I would barely eat. And definitely not meat, or fish, but I didn’t like most of the other stuff either. It was too wet. I was taken to the doctor because I had problems with food. I wouldn’t eat it and when I did, I would be sick. He said I wasn’t chewing my food.

    Of course I wasn’t. It was utterly disgusting. I didn’t want that stuff anywhere near me. I used to scream and get down on my hands and knees if my brother, who was one year older than me, brought his friend round to the house to play. I wouldn’t let anyone touch me. Not even my parents. They couldn’t touch my plate, or my cutlery. And I had to have the same cutlery, every time. But they didn’t think there was anything wrong with me. There were so many things that went unnoticed. But it wasn’t anybodies fault. No one could have known.

    Even now. It’s so difficult to diagnose autism. It’s so complex. Of course it is. Your understanding of the world around you doesn’t stay the same. You cope better at some times and not at others. There is no standard model of autism, because like you, we are also all so very different. But we do speak the same language and your son doesn’t feel safe. Not because he thinks you would hurt him. But because he’s experiencing sensory overload. Just like with adhd, they give them speed, and sometimes we need that constant interaction with the iPad, to blot out the other stuff and give us some space to process it all. Once he feels safe. That he knows it’s ok to go on his iPad. Try and give him space for him to show you what he’d like to do. Things that could maybe work better for him, instead.

    I used to love reading and studying and I will get back to it. But right now, my senses are so overloaded that I just need to rest. Maybe all these changes are too much for him right now and he just needs some time to relax and play on his iPad. Does he need to go to school? Does he want to go to school? How does he feel about going back to school? He might not be able to tell you why he doesn’t want to go, if indeed he doesn’t. But it will be because he needs time to process the world around him.

    Like I said. I haven’t got all the answers. But maybe trying to make him feel safe, is a good start by reassuring him that it’s ok to play on his iPad more often just now. And that you will help him find something else that will help him get to sleep at night, without having to use the iPad. Does he need some time alone?

    Bringing up a child with autism is never going to look the same as bringing up a child without autism. Maybe he’s not ready yet for all the changes that school brings. It wouldn’t mean he’ll never be able to tolerate changes. But he hasn’t even got a handle yet on who is he and all these changes are coming at him. It’s like the ground beneath him is shaking.

    It will be about changes. Or maybe it’s not. We do things to try to help the kids get through changes. But maybe, they just can’t tolerate the same level of interaction as other children can. The same number of changes. What if we stop trying to get them through the changes and make it so there are less changes?

    Maybe he needs to be home schooled for a little while. I’m not saying that’s possible. Or that it has to be that way. Even if that’s what he wants. I’m just trying to give you examples of other ways to look at this.

    He’s clearly struggling with something. His usual coping mechanisms have been failing him, progressively, over a period of time. He’s trying to tell you something but can’t. He doesn’t fully understand it. The one thing that does work for me. Every time. Is to minimise my contact with the outside world. It’s never a long term solution. But it’s as if it gives me some breathing space, at least.

    Now that I’ve started to get, a run of a few days with no changes, and no interaction with the outside world, with a bit of support, I’m gradually spending less and less time on my iPad. Even if it’s only a few minutes, here and there.

    I don’t know what will work for you and your family. I only know your son is trying to tell you how he’s feeling. But he can’t. And that’s a scary and lonely place to be. If you can somehow let him know he’s not alone, and that he isn’t doing anything wrong. It’s ok, he can have his iPad for a little while now. For as long as he needs it. Until you can all work out a better way to help him get some sleep. Maybe he needs to sleep in the day time? I don’t know. We’re all different but I know he also doesn’t live in isolation. He’s got a family around him and he has to somehow learn to live within that family. Which carries with it a certain level of responsibility. Reassure him that you don’t want to give him more responsibility than he can cope with, while he’s still a little boy. But that there are certain things we all need. Like sleep, and food, and playing and learning. What kind of things does he like? What makes him feel better? Where would he most like to sleep? It’s a gentle balance of trying to understand him, while trying to help him understand you. It’s often a case of trial and error. But if you can, try and minimise the stresses in his life, give him firm but loving and consistent (but flexible) boundaries (in that you understand if he doesn’t get things right every time). Try to engage him in things he enjoys. Maybe over time, maybe in a short while, it could be within days, that with this approach, he’ll naturally stop spending so much time on the iPad. Slowly. Gently. Step by step.

    We don’t feel and experience love in the same way that you do. But we still need loving. Even if it’s only so we can love ourselves. We don’t mean to cause you problems. We’re trying to tell you something, that we don’t even know ourselves.

    You’re doing such a good job. He felt safe enough to tell you he was scared. Even if he couldn’t articulate it fully. That tells me that you love your little boy and he knows it too. The world can be a very scary place when your autistic.

    Would a weighted blanket help? Does he like his bed covers tucked in tightly under the mattress at night? I'm just throwing ideas out there. What could help him make more sense of the world or feel more safe and secure?

    I guess I’m not very good at suggesting what to do for the best. I think that probably takes a combination of meeting the needs of the autistic person, trying to understand them as best you can, and using your nt knowledge of the world etc, to come up with plans and strategies that best help everyone. If I was good at knowing what to do, I guess I wouldn’t be in the situation that I am in right now. So I guess, my contribution is to somehow help you see a little of what it might be like for your son and I guess, to consider, that if he manages, with a few bumps and scrapes along the way, to somehow, ‘fit in’, to some degree, to meet the expectations set out for children, of a similar age to him, that he ‘might’ just be learning the rules, learning to ‘fit in’, but that he might not actually be processing what’s going on in his world. Because it’s all going too fast for him. I don’t know what’s really going on for him, we have only a little bit of information here and not all autistic children, grow up and remain largely, lost and lonely children, like me. My friend’s son is doing really well. He failed uni, he didn’t get anywhere near as much support as he needed, but he went back home, where he is safe and loved. And now, he’s about to finish an apprenticeship that he’s been doing at the local hospital. He’s absolutely loving it. He’s been getting paid over a thousand pounds a month for it and shortly, he’ll be travelling to Japan, all by himself. His Mum suggested it, and encouraged him to follow his dream of going to Japan. He would never have thought of going there, even though he’s had a fascination with Japan for a long time. But now, he’s almost all ready to go and he can’t wait. He’s got a terrific friend, as well, who he does lots of wonderful things with. His friend’s mother, a school friend of my friend, well she and her husband are both financially and time free, to a large degree, so they’re able to financially support their son, and my friend’s son, to go out and about and do lots of fun things together, exposing them to a varied, interesting and fun life which is really helping the boys to be themselves, without becoming isolated and completely detached from life. So I’m not trying to say there’s only one way to do things here, or that it’s all about the autism. I’m just trying to give you a glimpse into our world and say, sometimes, things aren’t always what they seem. But truly, you sound like you’re doing a terrific job. I hope you work it out and you all enjoy many good nights of sleep.

  • Thank you so much for your intuitive words, in parts it made me tear up. I also thank you for taking the time to try and help me understand my son.

    ive came to realise that my son as well as most others on the spectrum perhaps,  have got to contend with a constant stream off there brains processing their environment and those around them.  This must be tiring and consuming. And in the moments I pick up on his anxiety I try and limit my expectations on him. At the moment we’re struggling getting him in the bath/shower and I’m trying to find a workable compromise... haven’t found it yet. He becomes immovable when in these moments.  I’m aware right now it’s because school has resumed. He has found this term difficult and haven’t really settled fully.  It’s hard when school doesn’t see difficulties. They are supportive with us which makes me think they do see things but either are restricted on how much that can admit too or it’s just verbal.

    he too has a limited diet mainly bread, due to this he carries weight which I is also difficult for him as it does not help him fit in. Sport is not his favourite activity. So it’s hard to find the balance.

    Fitting in and making friends is difficult for him to do not understanding social cues at times and what is expected of him and all he wants is a friend. Socially when I’m observing him he often speaks inappropriately about very strange subjects ( recently negative comments about David trump) when in adult company as If he thinks this is the topic of conversation every adult speaks off. 

    He concentrates on 3 activities that he says he gets enjoyment out of Lego, minecraft and YouTube. I just wish you tube wasn’t so unsafe, I have parental controls on and im trying to help him understand the dangers of you tube but I’m not sure how much he’s taking in. These things seems to help him distress.

    I see some of his difficulties as I am his mum, the problem I Have is nobody else sees it professionally. We’re under a paediatrician and have been for 2 years and we’re no where near close to getting on the list for an assessment. Paediatrician sees something but school are stating there is no traits at school to see therefor the paediatrician can’t move forward. It’s so frustrating as more and more I see Ls social communication difficulties.

    getting a dx will not change anything I know this but i think it will help us both work through this together. He tells me he knows he’s different that his brain works different. Is it common for someone who is on the spectrum to be able to identify with their condition like that?. I’m never sure how much he understands feelings, he gets anxious a lot although I over the years I’ve limited some of these anxieties for him by finding ways to help him feel safe, change bothers him especially at night. Night time is definitely his anxious time and can cause difficulties when on trips etc. We know stay in the same places and take home comforts with us.

    L must mask alot at school for nothing to be seen.

    i feel bad because I do become frustrated and get drawn in to verbal confrontations more often than not which doesn’t help and just ups his frustration and anxiety. There are times I also forget about his difficulties, I know this sounds strange as a parent but he looks and acts so plausible with a very good vocabulary and mature beyond his years in certain situations. 

    Im so frustrated that I can’t get the right help for my son because people don’t see him. Or the paediatrician things it may be so mild this is why no one sees it. Yes I feel he is high functioning and probably is milder end but  still as he gets older things are gong to cause real problems, like the transition to high school in 2 years, which is really worrying me.

    sorry for the long reply it was just so nice to have someone recognise the possible difficulties my son has.

    thank you again

     Tracky

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