I recently attended a workshop on sleeping strategies for children with ASD. The workshop was part of the parent training program provided by the Geneva Centre for Autism. Unless otherwise cited, the information and strategies outlined in this blog post have been taken from the information provided at the workshop, but I have reorganized it somewhat and supplemented it with examples from personal experience. You can find more information about the Geneva Centre at their website: www.autism.net
Along with eating problems and toilet training, sleep issues complete what I often refer to as the “trifecta” of difficult, stubborn and very common problems faced by parents with children on the autism spectrum. All three are issues that we have very little control over – we can’t compel our children to eat, use the toilet or sleep. However, sleep problems are probably the worst ones for us to deal with because when our children don’t sleep, neither do we.
So, what can we do about it? Well, obviously the first step is going to be to take data! I have after all been thoroughly
brainwashed trained by behavioural therapists so I know what to expect at all the parent workshops I attend! In all seriousness taking data really IS a great first step because, not only does it give you the information you need in order to work out the best strategies to try to help your children sleep, it will also be invaluable information to provide to any professionals you may have to recruit to assist you in dealing with particularly intractable sleep problems. Another benefit of taking data is that it can help you truly assess whether strategies you are trying are in fact succeeding. When we’re exhausted problems often seem worse than they actually are. If the data tells you that your child is in fact sleeping for an hour longer than they were a month ago then what you’re doing is working!!
At the start, try and collect two weeks of information if you can as this is usually sufficient time for any patterns to emerge. The data collection system I like the best for sleep is very simple like the one below, but you would have one column for each hour of the day so you can keep track of any sleep breaks during the night. Make sure you record naps and take note of things that could be affecting sleep, like illness.
|Date||8:00 PM||7:00 AM||3:00 PM||Total Hrs Slept||Comments|
Why do you need to track data and what does it tell you? Does it matter when your kids sleep or how often? Why is it vital (other than for our own sanity) for us to do everything we can to help our ASD kids get good, quality sleep? Here’s some information you might find useful when thinking over the answers to those questions:
- In my experience the first thing parents mention to other parents whose children are having sleep problems is Melatonin. Many parents swear by it for good reason – it usually works. However, I have deliberately left mentioning it until last for a number of reasons. First, its not always the best solution for every child and sometimes it doesn’t work. For those children it does work for initially, its often necessary to increase the dosage for it to keep working and then after a time it can stop working altogether. At this point the child and parents are now back at a sleepless square one. In my opinion, melatonin shouldn’t be your first choice when dealing with a sleep problem. Keep it in reserve and try other strategies first. If those aren’t working then discuss your options with your child’s pediatrician and they will work with you to implement melatonin (or other medications) if they think those meds will work well for your child.
- Sleep is still largely a mystery – doctors and scientists still don’t understand the exact purpose of sleep but they do know that we can’t function without it.
- Our digestive system works 3-4 times faster when we are asleep. One of the things that I noted with Owen was that he would often have a bowel movement soon after he fell asleep. This meant that he would finally drop off …. aaaaand I’d have to wake him up to change his diaper. No-one was happy with this result! I played around with the time of his last meal and his bedtime (in conjunction with some other strategies) and now he rarely has a BM at night so once he is asleep he typically gets a good block of sleep before waking up again.
- If your child is waking up repeatedly through the night then its likely that they are not getting any deep sleep. Did you know that maintenance of healthy muscles requires deep sleep? Given that Owen is low-toned this fact was yet another motivator for me to do whatever I could to help him sleep longer.
- Our immune system produces antibodies while we sleep.
- Sleep plays a role (admittedly not one we wholly understand) in brain development. This is why babies and children need more sleep than adults. Its also a big reason why we need to ensure that our ASD kids get good quality sleep. Another reason is that insufficient quality sleep can cause or exacerbate problems with attention, memory, learning, impulsivity, mood swings and hyperactivity. The reason I’m emphasizing this point is because one of the strategies you may need to consider if all else fails is medication. A lot of us feel incredibly fearful at the prospect of medicating our children – me included. I’m not suggesting that medication (including melatonin) is something you should rush into and I’m glad I haven’t yet had to consider it for my children but if its something you are faced with having to choose then don’t feel guilty about it. Always remember that our children need quality sleep even more than neurotypical kids do and yet they are less likely to get it!
- When we’re exhausted we are less able to remember some details that could be important in assessing our kids’ sleep issues. Writing information down will ensure that we track everything that could be relevant when determining why our children have problems sleeping. As I alluded to above, it can also help us track progress in a way that’s more reliable than memory alone.
- Sleep disturbances can be broken down into three distinct groups. The sleep strategies you deploy are largely determined by which group your child falls into. There is a fourth group – hypersomnia or excessive sleepiness. If your child is suffering from hypersomnia then you should seek medical advice right away. The other three groups are:
- Problems with sleep onset (can’t fall asleep)
- Problems maintaining sleep (waking up fully during the night)
- Sleep pattern issues (the timing and length of different sleep phases)
The importance of sleep hygiene and routine
Before we take a look at the different strategies you can use depending on the nature of your child’s sleep problems there are some general points to remember about “sleep hygiene” which apply to everyone regardless of the specific nature of their sleep issues. If you have ever suffered from insomnia or hypersomnia as I have then you will no doubt recognize all of these pointers:
- No food or drink containing caffeine in the six hour period before bedtime.
- Eating should be done at regular times throughout the day and the times should be consistent.
- Exercise should be during the day with nothing vigorous occuring before bedtime.
- The timing of both bedtime and wake up time should be consistent every day, including weekends.
- ASD kids thrive on routine but the usual recommendation is to vary routines once they are established in order to help our children adapt to change more easily: “If you teach rigidity you get rigidity” However, for sleep routines, when you have established one that works then generally don’t vary it, especially the 30 minutes before bedtime. The exception would be for items within the routine itself. For example, Oliver likes to take certain toys to bed but I try and vary the toys he takes so that its not the same four ones all the time. Otherwise if I can’t find the particular airplane he wants he will meltdown while I’m tearing up the house trying to find it. Not terribly restful Similarly, Owen likes a bedtime story and while I always read to them at bedtime I vary the book so that they don’t freak out if its something other than The Going to Bed Book.
Problems Getting to Sleep
- Lack of a bedtime routine. One parent at the workshop talked about his older son (10, with aspergers) who viewed bedtime as one big power struggle. Going to bed was a long, tortuous process involving requests for drinks, toys, tv, books, food that wasn’t in the house, his need for a parent to be with him in order to fall asleep…. both the list and the negotiation over it was never-ending. We talked it over as a group, the facilitator suggested some strategies and all the parents discussed things that had and hadn’t worked for us. What we ended up with was a bedtime routine that the parents and their child would design together. Once the steps in the routine were agreed on they would put together a visual schedule outlining each step and the time allotted to it. This would then be the fixed bedtime routine. The child would still have lots of choice within the routine – for example, if an evening snack was one of the steps he would be offered the choice of 3 different foods (that his parents didn’t have to go to the store for) and he could choose which of the foods he wanted or he could choose to have no snack at all.
- Transition problems. This was a problem that I personally had with Owen until about a year ago. He was upset when he went to bed – screaming, banging his head, kicking the walls upset. It finally dawned on me when I recorded some data that I was usually removing him from a preferred activity (like watching a dvd for example) in order to take him to bed. In conjunction with his therapist I implemented a transition plan using a First, Then, Next board (see example below). First was the activity he was involved in, Then would be highly preferred activity that we would do in his bedroom and Next would be bedtime. Owen’s most beloved activity in the entire world is reading books and while I had always read to the boys before bed, I had never read to them in their bedroom. Shortly after I implemented the transition plan Owen started running to bed at night in order to read his bedtime books in bed (he wouldn’t sleep when he got there but… one step at a time, right?!)
- Lack of a regularly scheduled bedtime. Most people have heard of our circadian rhythm - its our body’s internal sleep-awake clock which is usually established by the time we reach 4 to 6 months of age. There are a number of things that affect this body clock: light and dark, temperature, noise and timing – when we make our bedroom dark, comfortable and quiet and when we go to bed at the same time every night these are all powerful environmental cues that can trigger the onset of sleep.
- The importance of place. This is not a criticism of the family bed concept. The problem here is when your child has more than one place in which he/she sleeps. If they nap in a stroller during the day, fall asleep at night in their bed then move to their parents bed during the night the environmental cues that trigger sleep for them are mixed. Wherever you want your child to be sleeping at night is the only place that they should be sleeping. I know this one is tough – as a single mother of twins I can tell you I found it particularly hard to break the habit of the boys coming into bed with me when they had problems sleeping, but once I was exhausted enough to realize that I had to get them sleeping in their own bed I persevered until it happened. They were upset at first but this is not the same as ”ferberizing” infants and I did not leave my boys to “cry it out” - what I was firm on was they had to stay in their own beds and I gradually removed myself from the equation as they became accustomed to that concept. At first if they woke up during the night I would lie down with them in their bed, we then moved to me sitting in their room and we ended up with what we do now which is to have a quick cuddle, a lullaby if needed and then I leave. The only time they sleep in my bed now is if they are sick and I need to monitor them.
- Respect their bed as a sleeping place. In addition to ensuring our kids always sleep in the same place, we need to teach them that their bed is only for sleeping. We only do activities in and on their bed that are designed to induce sleep – reading, cuddling, using soft voices, relaxation exercises, etc. We don’t do – tickling, bouncing, jumping, playing games, eating and all the other myriad things we do when we’re awake.
- Sensory issues. If your child has sensitivities then you have to take those into account. For example, Owen usually runs very hot while Oliver runs much cooler. Given that they sleep in the same room I make sure they’re comfortable by adjusting their clothing (Oliver typically wears warmer bed clothes) and bedding (Oliver likes his blankets heavy and warm, Owen likes lightweight and cool). If your child loves deep pressure and finds it calming, then add 15 minutes of moderate pressure massage of their arms, hands, legs, front and back to their bedtime routine. One of the strategies I have used with Owen is to position his bed beside the wall and give him an excess number of pillows. This has not only helped him with getting to sleep but it has also helped him with wake ups during the night (see next section).
- Watch the timing of vestibular activities. This is anything that results in moving of the head and affecting the sense of balance, so examples would include bouncing on a trampoline and swinging. For a lot of children these activities have a stimulating affect that can last from 4 to 6 hours. For that reason you likely want to avoid them in the hours before bedtime. Watching television can have a vestibular effect – if your children are having problems falling asleep then you may want to limit the amount of time they watch tv before bed.
- Work out what is calming for your child and incorporate some of those activities into their bedtime routine. A great example of this is bathtime – Owen actually finds water stimulating so having bathtime as part of a bedtime routine doesn’t always work for him.
- Teach relaxation and self-regulation techniques – this doesn’t have to be just for bedtime but could be incorporated into a sensory diet as a way of helping children who have problems with hyperactivity, anxiety or aggression. A technique that’s especially useful for bedtime is progressive muscle relaxation or PMR. You can use the visual below or other activities which accomplish the same things like squeezing on a ball and pulling on a theraband.
- Naps – if your child is still having naps and can’t get to sleep at night then you likely need to phase out those daytime nap(s).
Problems Staying Asleep
One of the things that works against us when we want our children to stay asleep is a part of the sleep cycle called “micro-arousal”. This occurs many times during the night – we do not wake up at this time but our body shifts into a state of consciousness that allows us to check our internal and external environment. Typical things that can occur during micro-arousal include – pulling blankets over us if we are cold, kicking them off if we are too hot, moving to a more comfortable position and even a visit to the bathroom. In ASD children micro-arousal can quickly turn into a fully awake state if, for example:
- They fall asleep in one place and are then taken to bed. Don’t move a sleeping child from one place to another – you need to teach them how to fall asleep in their own bed.
- Parents leave the room after the child is asleep. Sleep associations are very powerful – if a child needs the presence of a parent in order to fall asleep they will likely need that parent’s presence again during periods of micro-arousal. The only option here (other than sleeping with your child full-time for the rest of their life) is to teach your child to fall asleep alone using the strategies outlined above.
- Sensory sensitivities (e.g. temperature changes, the need for deep pressure). Owen finds pillows and cushions extremely comforting. Even after he had learned to fall asleep, one problem he continued to have was waking up around 1AM and running around the bedroom. He would be awake for an hour or more, move furniture around and would typically end up falling asleep on the floor. Now I have put a lot of pillows in his bed he is far less likely to get out of bed when he wakes up at night and can comfort himself back to sleep.
- Unexpected noises in the environment. Ever since they were babies I have played very low-level music during the night – I have several cds that I use and I put them on repeat. When the boys wake up, the room sounds the same as when they initially fell asleep. Another strategy is to use a white-noise maker which plays sounds like fans or the ocean. Using these in your child’s room at night can de-sensitize them to noise over time.
Other issues that may cause problems with respect to waking up during the night and not being able to get back to sleep are:
- Child is hungry or thirsty. This is tough, but as a general rule don’t provide snacks or drinks during the night otherwise this will quickly become a routine requirement. One parent at the workshop has to wake up at 3am every night to cook her son eggs – its the only time he will eat a substantial meal.
- Fears and anxieties – you will likely need to work with a doctor and/or therapist in order to manage these.
- Side effects from medications.
- Medical problems (e.g. ear infections).
Sleep phase issues
The typical sleep phase is one that involves non-REM slow wave sleep which occurs during the earlier hours of sleep and REM (rapid eye movement) dream sleep which happens during the later hours of sleep. These phases are punctuated with periods of micro-arousal. Sleep phase problems occur more often in children with differences in brain development. These children will typically either fall asleep early and then wake up VERY early or will fall asleep late at night and have problems waking up in the morning. In addition to differences in brain development, sleep phase problems can be caused by:
- Too much stimulation
- Shifts in the circadian rhythm (caused by travelling across time zones or the change to and from daylight savings time)
- Parasomnias – e.g. teeth grinding, sleep walking, sleep talking, head banging, night terrors.
- Illnesses like asthma or gastrointestinal problems.
- Seizures (these affect 20 to 25% of ASD kids)
The only behavioural method that can be used to help with a sleep phase problem is to gradually implement small shifts in the time a child falls asleep and wakes up in order to move towards an optimal time for falling asleep. So, for example, if a child isn’t falling asleep until 11.00pm but is waking up at 7.30 then your strategy to try and get him to fall asleep earlier would be as follows:
- He stays awake and does not go to bed until 11.00. If your bedtime routine starts an hour before bedtime then start it at 10.00pm and he will go to bed at 11.00. Create the association between the bedtime routine resulting in sleep.
- Gradually start to bring forward his wake up time. Start waking him up at 7.00AM instead of 7.30. He cannot nap during the day. Shift the start of the bedtime routine to begin at 9.30PM and with a new bedtime of 10.30PM.
- Once he is regularly falling asleep at the earlier time then you can make another change to the wake up time. Only change the wake up time by 30 to 60 minutes once per week.
None of this is working!
Sleep issues are tough to resolve and for this reason (I’m sorry!) they will take time to fix. They simply cannot be dealt with overnight (pun intended). Start by taking data, try the strategies outlined above for a month and then take some more data. If you see an improvement then carry on with the things that are working and drop the things you think aren’t. I know its exhausting – when I was facing sleep problems with Owen I would just keep telling myself that I would keep trying for one more night (just one more night, over and over again!) If you can, get a consult with a behavioural therapist and an occupational therapist if sensory issues are in play – they can review the data you have taken and possibly come up with additional strategies that could work for your child. There are also some books or articles you can check out:
http://www.pantley.com/elizabeth/books/0071381392.php Elizabeth Pantley’s books for babies, toddlers and preschoolers are written with neurotypical children in mind but I used many of the strategies she suggested in her baby book before my kids’ diagnosis and I believe that’s why their sleep issues weren’t worse.
http://www.brookespublishing.com/store/books/durand-3157/index.htm I haven’t read this book but it was a recommended resource at the workshop and it covers all special needs children, not just those with ASD.
I only have a reference for this article: Unpacking Your Bags: Sleep Strategies for Individuals with Autism by Max Wiznitzer. Published in the Austism Asperger’s Digest in March/April and May/June 2000.
http://www.amazon.com/Can-Get-Better-Parents-Caregivers/dp/193128203X Sadly this is currently not in print, but you might be able to find a used copy. This book deals with general behavioural challenges for ASD kids, including sleep problems.
If you have implemented all the strategies you can think of and the sleep problems have not improved at all then it is time to see a doctor or pediatrician who can talk you through some medication options. Ones you will typically encounter are:
- Melatonin. This is a hormone that regulates the sleep/awake cycle. Our levels of melatonin naturally rise in the evening in order to signal to our bodies that its time to sleep. Doses of 0.25 to 3 mg about 30 to 60 minutes before bed can help some children fall asleep. It’s also possible to get a timed-release formula. Doses in excess of 3 mg appear to have no additional affect and the long-term usage of melatonin has not been documented. You don’t have to talk to your doctor about using melatonin as it is sold over-the-counter in health stores and pharmacies but its a good idea to give it to your child under medical supervision.
- Benadryl or other sedating antihistamine. Possible side effects can include over-activity and over-stimulation.
- Clonidine. This usually only lasts for 4 hours but you can obtain a transdermal patch which is worn for 3-7 days before being changed. Side effects can include irritability and daytime tiredness.
- Anti-depressants with a sedating side effect like Imipramine, Amitriptyline and Trazodone.
- Anti-psychotics in small doses like Thioridazine, Haldol and Risperdol.
I personally (i.e. me, not my kids) used sleeping pills during a period of intractable insomnia. One thing I will say is that I’m glad I combined meds with good sleep hygiene practices – it was those strategies and the powerful sleep routineI had that allowed me to phase out the sleeping pills once I had built up a reservoir of good quality sleep. For that reason and because sometimes medications can lose their effectiveness over time if you do decide to use medication (including melatonin) in order to help your child fall asleep, continue to follow a sleep routine because its the strategies outlined above that are actually teaching your children to sleep and that’s a lifelong lesson that we all need to learn.
Edited to add some other sleep-related recent posts from bloggy buddies: