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Sleeping with autism and ADHD
Matt Dwyer: Hey, I’m Matt Dwyer and welcome to Sleep where professor Harriet Hiscock and associate professor Emma Sciberras from the Murdoch Children’s Research Institute help you identify sleeping problems in your children from infancy through to secondary school and give you easy to understand steps to improve their sleep cycles and overall health over the series.
We’ve gone from talking about sleep in infancy all the way through to adolescence and how we manage their healthy sleep cycles. One thing we haven’t really gotten onto yet is special populations. Two of the main ones being ADHD and autism. Harriet, do we approach these differently? and how do the sleep cycles change for special populations?
Professor Harriet Hiscock: Well, I might talk a little bit about autism and then throw over to Emma to talk about attention deficit hyperactivity disorder or ADHD. So autism is now thought to affect some incidents will say 1 in 60, but certainly 1 in 100 Australian children. We’re not quite sure why, but we’re certainly seeing more and more of it.
I think partly that’s due to better recognition. Children with autism, up to 70% of them will have a problem with their sleep at some stage during their lifetime so it’s incredibly common. That can often start with the infant sleep problems and toddler sleep problems we’ve talked about.
So, by and large, there are quite similar problems; however, there are a few different things with children who are on the autism spectrum. One is that they can get into very long pre-bedtime routines and everything has to happen exactly the same way, or they get very stressed and anxious. So their hand has to be held a certain way, they have to be patted a certain number of times, or the parent has to read the same book every night again and again, and if they deviate, then the child gets really upset. So that sort of set patterning is common. The other issue that we see in children with autism, that we don’t often see in other kids, is that they can be awake for two or three hours overnight.
So they get off to sleep, with or without their parent, and then they wake at about 1:00 AM.They’ll wake for two or three hours and then they go back to sleep again. Sometimes that’s okay because they stay in their room and they just play in their room and don’t disrupt the rest of the household, but it becomes a real problem if they’re getting out of their room and waking up their parents or other siblings as well.
That’s really disturbing for everyone. It also means that child’s not getting enough sleep, and that can have flow on effects to their behaviour and their learning the next day.
Matt Dwyer: I’m sure the autism spectrum is so broad.
Professor Harriet Hiscock: Very.
Matt Dwyer: So I guess you would be really approaching each case so specifically?
Professor Harriet Hiscock: Yeah, but certainly all the good sleep hygiene, the good sleep patterns and habits, still apply. So no screen time an hour before bed, no caffeine after 3:00 PM, having the same bedtime routine but keeping that a lot shorter, if you can, not letting that creep out to be an hour long routine.
Parents of children who are on the spectrum will probably be familiar with the technique called social stories, whereby you draw out a little sequence of what might happen at bedtime, or whatever social situation it might be. A social story for a child on the spectrum might be a picture of them having dinner, brushing their teeth, getting into their pajamas, reading a book, and then saying, “time for bed.” One of the things is that, because children on the spectrum can take things very literally, if you say, “time to go to sleep”, they might think they have to go to sleep straight away. You might actually have to say, “time to go to bed ,close your eyes, and rest.” That might be easier for them to understand. I think the social stories, and there’s a lot of them on the internet around sleep and developing a social story with your child, can really help set up the expectations and help to keep some limits, perhaps, on that bedtime routine that can otherwise just be expanded for a long time.
Associate Professor Emma Sciberras: There are some really nice resources on Autism Speaks. If you just do a Google search for that, there are really nice visual resources that parents can use to help to develop some visual charts around sleep and to really map it out for young people with autism. They also have bedtime passes on there too.
We talked about that in previous episodes where they can have that pass under their pillow and use that to leave the room once. There are particular ones that they have to give you a bit of an example of how to develop one with your child.
Professor Harriet Hiscock: I think the other thing is that there are a lot of products sold for sleep, full stop, but particularly for children who are on the autism spectrum. One of the biggest things has been weighted blankets because children on the spectrum often have some sensory issues and being contained or cocooned can make them feel calmer. A colleague of ours in the UK did a large trial comparing sleep of children on the autism spectrum who had weighted blankets versus those who did not and he found absolutely no difference in their sleep. So just a little caution to parents: don’t go out and buy expensive products. If your child does like that sensory thing, maybe just try a firm sheet and a doona and a blanket over the top of them, rather than buying an expensive weighted blanket might be a better way to go
Matt Dwyer: Children on the autism spectrum, do they need more or less sleep or is it about the same.
Professor Harriet Hiscock: They need the same amount. They often don’t get it, but they really do need the same amount as their typically developing peer.
Associate Professor Emma Sciberras: Yeah, and the research shows that if a child with autism also has sleep problems, it does make everything else worse.
So it means that they have more difficulty regulating their emotions during the day, their behaviour is harder to manage, and the symptoms of their autism overall are worse. That certainly indicates that they do need the same amount of sleep. Potentially by addressing some of the sleep problems, you might see some improvements in day to day functioning
Professor Harriet Hiscock: Yeah I agree, Emma, and I think a note of caution too, for children who are a bit further along the spectrum and who may be nonverbal, physical health can affect their sleep and they can’t actually say, “I’ve got a sore ear, I’ve got a sore throat.” It’s very important if your child’s been sleeping pretty well and they suddenly stopped sleeping well, and they’re nonverbal; take them to your GP, get a thorough physical examination, including their mouth because often it’s hard to get children on the spectrum to the dentist, and they can actually have holes in their teeth or an abscess developing. Sometimes you just need a thorough physical examination to rule out anything that might be disturbing them getting to sleep as well.
Matt Dwyer: In comparison, we’ve mentioned that there aren’t really any lasting permanent effects on less sleep for children growing up, who aren’t on the spectrum have you found that there are more lasting effects…
Professor Harriet Hiscock: I’m not sure if the research is out there for children on the spectrum in terms of longterm effects.
Associate Professor Emma Sciberras: Yeah, in the research there have been a few studies that have looked at how persistent sleep problems are in children with autism and certainly if sleep problems are untreated, they are more likely to persist over time. These haven’t been longterm studies. Really those studies aren’t available at this point.
I think it’s a really interesting area, but I think looking at some of the shorter term studies that have been done, they have certainly linked poor sleep to poor functioning in kids with autism.
Professor Harriet Hiscock: Emma and I are in the middle of finishing off a big study in Melbourne of children on the autism spectrum with sleep problems, half of whom have had our help and support and strategies and the other half which haven’t. We’re following them and, funding permitting, hopefully we can keep following them and have an answer to that question about the long term effects beyond 12 months.
Matt Dwyer: So what kind of options do we have when we’re addressing these issues?
Professor Harriet Hiscock: Certainly at the start of the night, with the routine, I think the social stories that I’ve mentioned are really invaluable for parents to set up a healthy bedtime routine and ensure that it doesn’t become too long. Otherwise, it’s really the same as you would treat typically developing children.
So if the child will only fall asleep with mum or dad next to them, you’ve got the choice of the camping out or the checking method that we’ve talked about in the earlier episodes. So the checking method is where you leave your child in their room and come back and check on them say, after a minute, two minutes, three minutes, and gradually stretching out that time. Or, the camping out is when you put your chair or camp bed right next to their bed, you might hold their hand for the first few nights while they fall asleep. The next few nights, you might sit there and just use your voice to reassure them. You gradually move that chair or camp bed out of their room about a foot every couple of nights. It might take, you know, 7 to 14 nights to move out. So really they’re the same strategies that we would use to get off to sleep, we’re just helping a child learn to do that independently.
I guess the biggest difference is when they do wake for those two or three hours overnight. What those children on the spectrum have done is that they now have two separate blocks of sleep. They’ve got their first block of sleep, maybe from 7:00 PM till 1:00 AM, then they’re awake for two hours and then they have a second block of sleep.
What we need to do is bring those two blocks of sleep back together. So we actually use the technique of bedtime fading, which we’ve talked about in previous episodes, where we temporarily set that child’s bedtime much later because we want the two blocks of sleep to merge together. If your child’s waking at 1:00 AM and not getting back to sleep until 3:00 AM, you actually might put them to bed at 11:00 PM which I know sounds crazy. You’re thinking, “wow, what am I going to do?” Try 11:00 PM for two nights and quarter to 11 for the next two nights, then 10:30 PM for the next two nights. What you’ll find is that they will merge those two blocks of sleep together and once they’ve started to do that, they’re no longer up for those two hours overnight.
Then you just start bringing everything earlier; bringing their bedtime forward. The important thing is, leading up to that late temporary, late bedtime, make sure there’s no screens. It’s a quiet time, quiet activities, looking at books, drawing, anything that works to quiet your child down.
Again, this is a big commitment for parents so they need to clear their diaries and make sure they’re not going out. I’ve had really good success of bringing those two separate sections of sleep together by doing this over a couple of weeks.
Matt Dwyer: A great point you made before was that some children, who are further along on the spectrum, may be nonverbal. What are some of the earlier signs that you can see to address that and help prevent sleep difficulties.
Professor Harriet Hiscock: Yeah, well, I think it’s about setting up really good routines and using visuals. They may be nonverbal but they might understand the pictures.
I think we need to take into account whatever your child’s cognitive age is versus what we call their chronological age or their actual age. So maybe they are a ten-year-old but their cognitive age, their intellectual age, might be more like a five-year-old. So you’ve got to match your strategies to what you would do for a five-year-old, not a ten-year-old.
Certainly drawing what you’re going to do is a really good way to do it. I sometimes act it out with dolls. I’ll have the child and the parent doll in my room, and I will show the child what camping out looks like or what the checking method looks like. That can be a really nice way for toddlers, who aren’t on the spectrum but who are maybe not quite verbal yet, as well as children on the spectrum to just show them what’s going to happen. It can be really helpful.
Associate Professor Emma Sciberras: Yeah, I think it’s a really important point. A lot of the research in sleep and autism has focused on children in the higher functioning range, and there really is less known about how to improve sleep in children that do have an intellectual disability, particularly that can go along with autism.
One of the other studies that we’re doing at the moment is piloting an intervention that particularly meets the needs of children in that category. We’re really trying to understand how well these strategies work with that group and getting feedback from parents about the program so that we can, hopefully, lead to testing it in a bigger study and then making that available to families too.
It’s a real difficulty area because more of the research focuses on the higher functioning range.
Professor Harriet Hiscock: I agree, Emma, and I think there’s also some evidence we do have from trials done overseas of children with neurodevelopment conditions, including autism, that if these behavioural strategies don’t work, then melatonin can be really helpful for these kids.
We don’t exactly know why, but maybe they don’t produce enough melatonin or they metabolise it quickly so there’s not enough around in their brains. Certainly I usually try these interventions for two or three weeks, the behavioural interventions, and if they don’t work, then plan B is melatonin.
Matt Dwyer: One of the other, bigger special populations is ADHD. How much sleep do they need? Is it a totally different case? Do we approach it totally differently to autism for those children who aren’t on the spectrum?
Associate Professor Emma Sciberras: Yeah, so ADHD stands for attention deficit hyperactivity disorder, and it’s a really common condition that affects about 5% of children and that estimate is pretty consistent worldwide.
When we think about that in Australian terms, that means that about 300,000 young people are affected by ADHD. It’s interesting, ADHD is actually one of the most well-researched conditions of childhood so we do know a lot about it. There is a body of research now focusing specifically on the overlap between ADHD and sleep difficulties. Similar to what Harriet’s been talking about with autism, sleep problems affect about 70% of children with ADHD. Children with ADHD actually need the same amount of sleep as other kids even though they might be a bit more bouncy. So I guess in terms of what we see with ADHD; it’s a pattern of inattention, hyperactivity, and impulsivity. In order to receive a diagnosis of ADHD, we’d be looking for evidence that those kinds of symptoms are occurring most of the time and in multiple settings. It makes it harder to learn at school or make friends and keep friends and so on. We conducted a study in 2008, which is scary that that was over a decade ago, Harriet. It was actually one of the first studies in the area to demonstrate the independent impact that sleep problems had for children with ADHD.
If a child had ADHD and a sleep problem, their symptoms of ADHD were worse. They were more hyperactive. They had poor attention. They had poor overall quality of life. They had more difficulties with day-to-day functioning and parents also reported that their mental health was worse if their child had a sleep problem. So certainly the evidence shows that kids with ADHD need the same amount of sleep and if they don’t get it, their functioning is worse. A lot of the similar strategies that Harriet’s been talking about are the kinds of things we’d use for children with ADHD. We’ve conducted a big study of 244 families where half of them received an intervention package. This package included seeing a clinician about sleep for two sessions, where we assessed their sleep and gave a series of healthy sleep habits. We gave them a tailored management plan, which was around the sleep problems that their child was experiencing. It might have been tailored around limit setting difficulties or anxiety difficulties or insomnia based difficulties.
We then looked at whether or not that intervention led to improved outcomes over time. It did. We found that the families who received that intervention reported improved ADHD symptoms in their child. It’s important to know that there were small improvements in symptoms. Treating sleep didn’t cure ADHD but it made it easier for families to manage.
We saw big improvements in sleep, which is important as that’s what we’re targeting, but we also saw big improvements in overall quality of life and daily functioning. We found that the children who received the intervention had improved working memory too, which is essential for academic learning, and we found benefits that persisted up to 12 months later. We’ve recently completed a trial where we’ve trained up paediatricians and psychologists in Victoria and Queensland to incorporate this intervention into their daily practice and they found similar large improvements in sleep too.
Professor Harriet Hiscock: I think the beauty of this was that it was just two sessions with the practitioner, so it wasn’t a lengthy intervention. It’s exciting to see. Actually Emma and I have just finished writing a book around sleep and ADHD, which is a fantastic evidence-based guide to assessing and treating sleep problems in children with ADHD.
It’s largely designed for clinicians and researchers, but I think parents who want to get into more detail would find it really of use and interesting.
Matt Dwyer: It’s a big book, I say that as a good thing.
Professor Harriet Hiscock: It is a big book. We really tackled it from birth through to adulthood actually, this sleep issue, and we’ve tackled behavioural and medical sleep problems in kids with ADHD and adults with ADHD.
We’ve really looked at the evidence behind what does and doesn’t work. So it is a book for parents who want to go a bit deeper, but certainly also for clinicians and researchers with a lot of international authors in there.
Matt Dwyer: On the topic of improvement; what sort of symptoms, apart from working memory, what sort of symptoms do you find improve? and do you think, when you said it was only two sessions, would you think that it would a snowball effect because their behavioural symptoms are improving, then that would role have roll-on effects to them being able to get to sleep better?
Associate Professor Emma Sciberras: So one of the things that we did in this study was look at, first of all, how much improvement in sleep we saw. We actually looked at how many of the improvements in symptoms were due to improving sleep and some of the symptoms were: inattention- not being able to pay attention-being disorganised, being hyperactive and impulsivity.
We found that part of the improvement that we were seeing in those ADHD symptoms was via sleep, by a direct improvement in sleep, but we found that there was another proportion that wasn’t explained by improving sleep. It’s hard for us to know exactly what that is. One of the things that we we think might be happening is that we’ve taught families and children active management strategies around rules and consistency and parenting type behaviours. We’re wondering if families were able to generalise and use those strategies for other aspects of the child’s life that aren’t only related to sleep.
Professor Harriet Hiscock: So what we’re thinking is that they were learning to set limits around their child’s sleep and then taking that to set limits around the child’s behaviour as well.
Associate Professor Emma Sciberras: Yeah and it’s really interesting in the area of ADHD and sleep. So we know that the sleep problems appear to increase compared to children without ADHD from about the age of two and we see continued high levels of sleep problems in childhood, adolescents, and even into adulthood because, despite misconceptions about ADHD, it persists into adulthood for about 60% of people. So sleep problems continue to be a problem in adulthood for this group. It’s not known why kids with ADHD have this increased risk for sleep problems. There’s no one cause. It could be that the pathways in the brain that relate to sleep, attention, arousal are overlapping. That might be a reason why we see increases in sleep problems in this group.
Another thing that can impact sleep problems is having an anxiety disorder, for example. We know that anxiety is also elevated in kids with ADHD. Some of our research shows that the things that go along with ADHD, like anxiety or significant behavioural difficulties, seem to be pretty strong predictors of sleep problems in this group.
The other one that’s, I guess, a bit special to this population is the use of stimulant medication. We know from studies that stimulant medication does result in a slight increase in insomnia that seems to be short lived, but that could be a contributing factor. It’s important to note that kids with ADHD that don’t take medication also still have increased sleep problems, so it can’t be the only cause.
Professor Harriet Hiscock: Yeah, I think that’s spot on Emma, and it’s very individual, a case by case situation. So if your child has ADHD and they’re on stimulant medication, as Emma said, when we first start on c-MET medication we start with very low doses to try and avoid insomnia as a side effect.
Then we build up over a few weeks to the required dose that the child needs. If they still have insomnia, it’s thought to be one of two things. Either it’s caused by the medication or it’s because the medication’s wearing off at around four o’clock in the afternoon and the child gets a rebound of their ADHD symptoms before bedtime, a bit like a second wind, that stops them going to sleep. Sometimes the treatment is changing the dose of the medication. Well, sometimes it’s giving a small amount of short acting Ritalin which lasts around four hours, as opposed to the long acting Ritalin which can last eight to twelve hours. Giving a short acting Ritalin at around 4:00 PM in the afternoon to take the edge off the rebound of ADHD symptoms actually, sort of counter-intuitively, helps the child get off to sleep better. I think that’s really important to know. If your child’s got insomnia and they’re on Ritalin, or other similar medication, speak to your treating doctor about changing either the dose or giving them a small amount at 4:00 PM.
Matt Dwyer: I’ll ask this question again; for the ADHD population, do you think that there are lasting and permanent effects when they’re in bad sleep cycles?
Associate Professor Emma Sciberras: We don’t have good long term evidence of that. We conducted a study a few years ago that looked at how persistent sleep problems were in children with ADHD and what the impact of sleep problems were on functioning but that was only done over a 12 month period. That study did show that sleep problems were really common in kids with ADHD.
Some were persistent, they had sleep problems at all time points, but for some other kids with ADHD, they might not have had sleep problems at one time point, but they were likely to develop sleep problems over time. That study indicated that if you do have a child with ADHD and you’re going along to see a pediatrician or a psychologist, that checking in regularly about sleep is important because it’s not fixed; it can change naturally and without intervention. We did find that sleep problems in that group were associated with poor outcomes, on average, 12 months later, but we need more long-term research to really understand that. We’re about to start a new trial which is testing out the sleep strategies that we talked about in a previous episode for adolescents.
The research that I was talking about before, where we showed improved outcomes associated with treating sleep problems, was conducted with younger children. It was very much a parent driven intervention but we had children’s input too. As we’ve discussed previously, sleep is very different in adolescents and requires more adolescent management and requires a different set of strategies to look at improving sleep in that population. For adolescents with ADHD, we still say that about 70% experience sleep problems. We’ve just received some research funding to test this out in a big trial and we’ll be recruiting adolescents into that trial over the next 18 months.
Professor Harriet Hiscock: Another problem we see in children with ADHD related to sleep, and more than in kids without ADHD, is restless legs syndrome. I’ll talk about that a bit more in a later episode but basically it’s where, at sleep onset, the children get a funny feeling in their legs. It might be feeling like pins and needles or like ants crawling up their legs and they actually need to move their legs to relieve that sensation. It’s known as restless legs syndrome, and it typically happens at sleep onset rather than overnight. We don’t really know what causes it. It’s associated with low iron levels so it’s definitely worth going to see your doctor and getting your child to have a blood test and get their iron levels checked because there is some evidence that treating low iron levels reduces the symptoms of restless legs syndrome at the start of the night. There’s also some evidence that moderate physical activity in the late afternoon, not just before sleep but late afternoon, can also relieve the symptoms. If your child is saying, “I can’t get to sleep because I’m just having to move my legs all the time to make them feel okay”, then that’s restless legs syndrome and it’s definitely something worth getting checked out and treated.
Matt Dwyer: Is all of this information in your book?
Professor Harriet Hiscock: It is all in our book fan. Yeah, absolutely. All the different behavioural and medical causes of sleep issues.
Matt Dwyer: Where can people find it?
Professor Harriet Hiscock: It’s available online. Probably the easiest thing is to Google ‘sleep and ADHD’ and our names Emma, Sharon, and Harriet Hiscock. It’s published by Elsevier, Academic Press.
Matt Dwyer: Perfect
Sleep was presented by Harriet Hiscock and Emma Sciberras and produced by me, Matt Dwyer. Audio production done by Darcy Thompson and our executive producer is Jen Govern. For more apps, go to podcast one.com or download the podcast one app and listen for free.
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