There’s a saying in the autism world – “If you’ve met one autistic person, then you’ve met one autistic person”.
Autism is, as we know, a spectrum, and on it lies innumerable facets of difference and similarity in comparison to not only the neurotypical, but the autistic alike. You may never know if you have met someone with autism, especially if they find they are socially well versed, however, as a parent of an autistic child I have found it simpler to try and spot the fellow parents of young, autistic children.
The No Sleep Club
When children with autism are very young, you may find yourself part of what I call the “No Sleep Club”.
One of many early-morning photos, taken at 3:37am.
Being the parent to an autistic child whom does not sleep is obvious to other card-carrying members of the no sleep club – the early mornings and late night bedtime turmoil, present themselves as red eyes; you get sick of people asking if you’ve been crying (and perhaps you have, and that’s ok – more on this later!). The dark circles and lines beneath your eyes you thought were predestined for your elderly years, start to make an unwanted appearance 20 years before schedule. People talk to you, but you wonder if you’re losing your hearing, because you just can’t understand a word they say, and it takes you approximately 45 seconds to reply to any question asked of you (except, perhaps for “would you like a tea or coffee?”), and when it comes to verbally communicating, you perhaps get an idea of how difficult it is for our kids to process information, as you struggle to form a complete sentence no matter how simple the subject matter.
The Now-Obvious Signs of Early Autism
Sleep is absolutely vital to every living thing on this planet, and only when you’ve been deprived of it, can you truly understand the devastating effect it can have on every angle of your life.
My daughter is 8 years old, and she was diagnosed with Autism when she was 22 months old. “22 months old? That’s impossible!” I hear you gasp. However my daughter was so obviously autistic from an early age that the diagnosis came secondary to the treatment, as it was clearly imperative to all involved that she should receive Speech and Language Therapy (SLT), Occupational Therapy (OT) and be supported at nursery via a Statement of Special Educational Needs (now known as EHCP) as soon as possible.
The first time a SLT came around to our house, she sat calmly on the floor opposite myself and my daughter (who was most likely running around in a circle humming nursery rhymes at the time) and took a moment to take-in what she was going to be dealing with.
A few moments passed, and she simply said “I am here because you are worried that your daughter has a social communication delay, and I just need to tell you now that we can see she has autism”.
That was basically a diagnosis at 22 months of age. We didn’t need a plethora of tests to certify her diagnosis, that was purely a formality which came at the age of 3.
Tippy-toe walking, no eye contact, hand flapping (stimming), no gestures (pointing, waving etc), a lot of screaming – almost constant screaming, poor coordination, severe sensory issues (although it took us a long time to work that out, and understanding her sensory issues quelled some of the screaming), echolalia, no functional language whatsoever, and … no sleep.
When Will My Baby Finally Sleep Through?
From being a baby my daughter would struggle to sleep – it was either that it was seemingly impossible to get her to fall asleep, or that she would sleep so lightly even when utterly exhausted, she could be woken by the wind blowing outside of the window.
At first, when she was tiny, we thought it was colic, then teething, then after this point the world just started spiraling into absurdity as we tried to figure out why she wouldn’t sleep.
It would take us hours, literally, to get her to fall asleep, and then when she did, we had no guarantee as to how long she would stay asleep for.
She would wake at two hour intervals throughout the night, and once awake, would scream endlessly whilst kicking holes in the plaster of the wall around her bed.
Under the mass of duvets and blankets lies one very exhausted little girl and her dad, having been awake for hours in the night – the pair finally succumbing to sleep.
Mostly she would simply start the day at 2am, and become more frustrated and bored as we slowly approached 5 am, where she had already been awake 3 hours. We took reluctant trips to the 24-hour Tesco just for a way to pass the time. We waited impatiently for 9am or 10am to finally arrive, at which point we might actually be able to partake in some “normal” activities, as the world finally caught-up with our family.
Not sleeping, not having a routine, not being able to rely on the therapeutic and restorative qualities of sleep throws everything you thought you knew about life right out of the window.
How can I keep dragging myself into work each morning when I’ve been up since 2am for the past 3 months? How can I socialise when I don’t know if my daughter will fall asleep before I go out, and stay asleep once we’ve come home? Even more importantly, is there anyone willing to babysit my insomniac child? Is my child going to be able to do anything with her day given she’s slept 4 hours in a 48 hour period? Am I going to be able to continue to function like an average human when my brain is breaking under the pressure of sleep deprivation?
The answer is no, you can not function without sleep – and this is why I am writing this post. You should not have to suffer and “just get on with it”. My partner and I have been through exactly what you might be going through, and I hope I can offer some help.
You need to rest not only to retain your positive spirit, wellbeing and mental health, but also to be able to devote yourself to being a brilliant parent to your autistic child.
First Things First – Getting the Right Support
If you have a child with a disability you are entitled to support from your local authority for something termed “Short Breaks”. Although this might sound like you’re being offered a weekend for two in The Lakes, it is in fact a form of funding that should provide you with regular breaks from your caring responsibilities. What is great about Short Breaks is the aim is to not only give you a rest so that you have a chance to do something you enjoy, but it should also provide your child with an opportunity to do something they can enjoy, safely with the appropriate care.
So, whilst you are working on strategies to enhance the sleep routine of your family, you should first enquire with your local authority about your entitlement to Short Breaks.
Short Breaks come in many forms, from having a trained carer take your child out to the park once a week, to funding towards clubs or paid-for activities that your child can partake in whilst you have a break. Funding can also cover overnight care if you are comfortable with your child being looked after away from home, or perhaps if your child is young and not of school age, funding can be put towards nursery sessions.
For more information and support regarding Short Breaks please look at this page on the Contact website.
Creating the Perfect Sleep Environment
Ensuring your child has the correct environment to sleep in is no mean feat, especially if your child has autism and is non-verbal. As a parent of a non-verbal child, you spend most of your day in a tizzy of confusion and shared frustration trying to guess what the basic wants and needs of your child are.
If your child has sensory issues, it is so important that you confer with your Occupational Therapist to clarify the underlying sensory needs of your child.
Children with autism and other disabilities can often be over (hyper) or under (hypo) stimulated by not only the obvious sensory inputs, such as sound, light and touch, but also two less frequently talked-about senses: vestibular and proprioceptive.
Sensory issues are in themselves almost as complex and personal to the child as every other dimension of their autism, and this is why you should ensure that your child has been seen by your local OT so you can make the right decision about changes to the bedroom and any aids that might benefit your child in their sleep.
Proprioceptive and Vestibular Issues and How they Might Affect Sleep
The Proprioceptive and Vestibular senses are not talked-about very often, but if they are not functioning quite as they should, they can cause some very confusing and upsetting sensory experiences for our children.
The vestibular sense relates to your movement and balance – it is the sense of bodily balance, the speed at which you are moving, a sense of overall gravity and how you know which direction your body is in.
The proprioceptive sense is even more tricky to explain, as it is how your mind computes the position of one body part to another, and also, how much pressure you need to employ for certain tasks, such as writing or gripping a cup.
We have discovered that our daughter is mostly hyposensitive in regards to both her proprioceptive and vestibular senses – therefore, she is under-responsive. We have found that this often translates as poor coordination and seeking more fulfilling physical sensory feedback (such as running, lying on the floor or enjoying the most terrifying of rollercoasters and amusement park rides!).
We have found an excellent website that can clarify the signs of hyper/hypo sensitivity to the proprioceptive and vestibular senses here : http://www.developmentalpathways.com/services-sensory.html
Bedtime products that might assist children with poor proprioceptive and vestibular senses are as follows:
If your child is under-responsive to the touch of clothing and bedding, they might not be getting the correct feedback about their position in bed whilst lying down. One excellent way of providing your child with a more constant source of sensory feedback is to try wearing base layers for bed time, or even just very tight-fitting pyjamas. The feel of the closeness of the base layers against the skin will give constant and consistent feedback, which may hopefully allow your child to relax as they are more aware of their position in bed.
Again, for children whom struggle to have a true sense of their position and their relation to the bed and their own limbs, they might benefit from a weighted blanket. The pressure from the blanket can provide great comfort to many children, and give them not only a sense of security, but fulfil those sensory needs. Weighted blankets come in various weights, and you should contact your OT to get the correct pressure ratio depending on your child’s weight and height.
Other Sleep Aids and How they Relate to Sensory Issues
Lighting for your autistic child’s bedroom is rather tricky – as it definitely depends upon where they sit in terms of sensory issues. Although we assume that an entirely blacked-out bedroom is most conducive to sleep, if your child is under-stimulated visually, you may find that the darkness of their bedroom offers only opportunities of pure confusion for them.
Every person will briefly wake in the night, even if we don’t remember the event come morning. However, for most of us, we are naturally very aware of our surroundings even when in a sleepy haze. Yet, if your child is not processing sensory input from their surroundings correctly, during that tiny moment of wakefulness, they may become scared, confused and anxious as to not only their bodily position, but also the obvious – where they are!
This may cause them to wake fully, and then you’re all back at step one!
I have found the best method to clarify your child’s lighting needs is to first try the obvious – make the room as dark as possible, then slowly work on introducing small light sources to see if this has a positive impact.
It took us 8 years to discover that our daughter is “afraid” of the dark. She can not explain why or what she doesn’t like about the dark, but by her own actions we now know she prefers a small light source whilst sleeping – and most specifically, she likes to be able to hold the light as she falls asleep.
So, to ensure the bedroom is as dark as possible we suggest:
Blackout curtains – ideal for keeping daylight out and also benefit by keeping the warmth in/cold out! (Be aware of patterned curtains though, as no matter how much you may like them for your child’s room, they can be over-stimulating visually.)
Groblind – Portable blackout blind with suction cups, eradicates most light by being attached directly to the windowpane. Fits any window up to 130 cm x 198 cm.
Bed Tunnels – these are fun whilst also being functional! In effect, you are safely bringing the ceiling closer to your child whilst they sleep, which may help them process their position in bed a little easier, whilst also adding a little more darkness and cosiness.
As for lighting – well, there are a number of therapeutic lights available, but sometimes it might just be best to choose a low-level light that specifically appeals to your child’s interests and likes!
Groclock – Many children with autism have learning difficulties and/or language delay, and this can make the ability to convey the difference between night and day almost impossible. We will cover more on this specific angle in the Sleep Hygiene section, however, the Groclock may offer a quick-fix in terms of trying to establish the difference in your child’s mind.
The Groclock will turn blue and display a ring of stars once it is bedtime, with a large sleepy, smiling star central to the clock during the nighttime. As morning approaches, the ring of stars slowly disappear, one-by-one, until finally, at a time of your choosing, the blue light will fade to orange, and a smiling sunshine will appear. My only issue with the Groclock is that it has been proven that blue light is actually not the best colour light for sleep issues, as it can mimic daylight. The best colour, confusingly, is orange or red – however I still think the Groclock is worth a go, especially if your child is starting to understand the passage of time, and it also comes with a lovely little illustrated book about farm animals to help your child understand the function of the clock.
Battery Operated LED Lights – If you feel your child would benefit for their own little light that they can hold, touch and operate themselves, then thankfully the internet offers a whole plethora of lovely designs and shapes.
I would suggest not going for a colour-changing LED night light, as this might offer too much stimulation and would stop your child falling asleep/being stimulated if waking in the night. (Also please ensure the light you purchase has a battery compartment which is secured with a screw, and preferably uses AA/AAA batteries rather than cell batteries – as these can be extremely dangerous if swallowed).
My daughter has a lovely little LED light in the shape of a cloud, and she will hold it close to her face as she falls asleep. It is battery powered and also has an auto-off function after 5 minutes, making it ideal for her to keep in her bed all night long. On top of this she also has a piece of LED wall art, which is battery powered, upon her wall just a short distance away from her bed. This is left on all night, but due to being battery powered it gives-off just the right amount of light.
Decor and Bedding
Again, although each child has very different needs, one aspect I believe is common for all young children with autism is that they will benefit from having a low-stimuli bedroom. This is important in a way that lowering visual stimuli applies to all children of a certain age – if there is nothing in their room to distract them, then it is obviously very difficult for them to be distracted!
This was one aspect that really touched upon a nerve with me when my daughter was younger – on learning I was to become a mum, one of my first realisations was how much fun it was going to be to decorate my child’s room in an exciting way! Lots of lovely pictures and colours, pretty ornaments and oodles of toys for them to enjoy.
However, as time progressed, and we started to realise that our daughter needed extra help with something as simple as sleeping, it occurred to me that I needed to relinquish my hold on my previous dreams of a fun bedroom for her, and concentrate on making it functional and calming.
Very pale pink, green and cream are proven to calm both boys and girls with autism
I suggest that choosing very calming colours is the first-and-foremost important step. Colours such as very pale green or cream are proven to calm. It is imperative that you stay away from not only bold, bright colours on the walls, but even more importantly, patterned wallpaper. The patterns in the wallpaper can be visually arresting to even adults (ever stared for too long at an abstract pattern, that you become convinced you see something relevant in it?!)
For our kids, patterns in wallpaper can be actually quite unnerving for them (or for some they might be overly engaging), and may completely occupy their thought processes, meaning they can not relax or go to sleep.
The same applies to bedding – keep everything simple in terms of calm, pale, plain bedding and not too many accessories, such as throw-cushions etc.
Next, is toys. As I mentioned previously, I initially wanted a little safe-haven for my daughter when she was born, but it didn’t take long to understand that having a bedroom brimming with toys and therefore, distractions, was ultimately not ideal in terms of getting her to sleep.
This doesn’t mean that your child has to have an entirely desolate bedroom, devoid of anything of comfort – however, I would keep articles to that requirement – only items that are simple, and will provide your child with comfort.
If you can experiment with making your child’s room low-stimuli for a trial period, and you find this has a positive effect, then once they are a little older and (hopefully) sleeping better, you could slowly reintroduce a few fun items.
My daughter has a cabin bed, and below it is a set of storage drawers/boxes that contain her toys – whilst she is sleeping, she can not see them, and I think that helps a lot.
Sleep Hygiene – What is it and How Will it Help?
Something of an odd term if you’ve never heard of it before, “sleep hygiene” relates to all the activities and processes involved in the approaching period before bedtime (and even during the nighttime, when your child should be sleeping). There are a number of key guidelines that should always be followed before bedtime to ensure that your child is relaxed and calm before even attempting to put them in bed.
Visual Aids and PECS
If your child is non-verbal or has SEN it can be almost a surreal experience trying to convey to them that they need to sleep at night. Not only do they need to sleep, but mum and dad really, really need them to sleep. If they don’t sleep, well, everyone is very sad, because they’re very tired. That is putting it mildly.
It is difficult for parents of typical children to truly get this point across to their kids without simplifying the subject, and even more so if your child struggles with new or abstract concepts.
Hopefully, depending on age and the support you have received so far, your child may be able to understand simple symbols and may even enjoy reading short picture books. If so, then I would enquire with your SLT to see if not only do they have visual aids and “Now and Next” boards you could use with your child before bed, but also they may have on file a “social story” regarding sleeping.
The PECS and visual aids, used alongside a Now and Next board, or even a time-line, can help you map-out exactly what is expected of your child before bed. Having a good routine and simplifying this in a way that “speaks” to them more easily using pictures, may help alleviate some of the frustration and confusion when it comes to getting ready for bed.
Bedtime Prep and Calm-Time
Bedtime prep should be started an hour before the actual desired sleep-time. The first important part of this prep is to stop all high-stimuli activities – no iPads, TV, games or loud music. There needs to be an obvious stop to the usual daytime activities so they can understand that soon, it will be time for sleeping. Personally, we have found that moving our daughter upstairs in the hour before bed works well – now she is older she can potter around for a while in her bedroom whilst we watch her, and then we move on to having a bath. We make sure all the lights are low-level, curtains closed and that every night we do all prep (other than the bath!) in her bedroom – so she knows for sure that this is the room where sleeping happens, and hopefully (!), will stay in there during the night.
Please keep in mind that your GP may be able to prescribe melatonin for your child – melatonin is a hormone that is released by the body as daylight levels fade, allowing you to relax and helping your body and brain understand that sleep is soon due. Although we did try this with our daughter, unfortunately it made no difference to her sleep issues. It can not do any harm to naturally ensure that your child’s circadian rhythm (body clock) is ticking over correctly though, and the best and natural way to do this is to ensure lots of outdoors/sunshine in the daytime, and dark, calm time before bed.
Just as ensuring the time before bed is simple, predictable and calm, it is just as important to carry-through these concepts if your child wakes in the night. I know first-hand how difficult it can be to retain a sense of control in your role as a parent when woken endlessly, night after night. You may get to a point, after weeks or months of sleep deprivation where you feel like giving in to whatever you feel your child wants when they wake early.
I have shared support groups with parents whom understandably, yet ultimately counterproductively, did things like offer their children juice and biscuits upon waking in the night, put the TV on for them (in the child’s bedroom nonetheless) or even let them play with an iPad. I am not judging anyone who feels like this is what they need to do to get a few extra minutes sleep, but as I said previously, you are ultimately creating a nighttime environment that will never be suitable for sleep. If a child (with or without SEN!) learns that they will receive treats or partake in fun activities in the middle of the night, they will probably keep waking for that exact reason.
Lying on the sofa, 3am, I have many-a-times been roused from my swirling, semiconscious nightmares of dense, seemingly idyllic woodland being trampled upon by giant, ballerina-skirted girl-monsters – because I too, have given up on trying to make my daughter sleep and given into her watching In the Night Garden, because I just didn’t know what else to do.
Further Help and Support
However, hopefully, even if that does sound like an average morning for you, I hope that if you can follow some of the tips we have offered here, we can help you and your family get the sleep you all deserve.
Writing to you directly as a mum who has been through the depths of sleep-deprivation despair, I understand that these tips we’ve offered you today might just seem too much to organise and change on your own. This is why I would like to reiterate that no matter how bad the situation may seem, or how difficult it is to keep on-top of everyday life whilst having such substantial caring responsibilities, it is imperative that you seek assistance and respite for you and your child.
It is so important that you take the time to care for yourself – as important as the care your child needs. Remember – contact your local authority to discuss your entitlement to “short breaks” respite, and if you are ever so tired that you are “just not yourself” or feeling very unhappy, I implore you to see your GP to discuss support, or for you to contact one of a number of disability charities that offer fantastic advice and emotional support.
Contact: 0808 808 3555
National Autistic Society: 0808 800 410
Cerebra: Sleep Service 01267 244210
Many thanks to Chris Bonnello who helped with the editing of this post:
Chris Bonnello (Autistic Not Weird)