Sleep Challenges & Autism

Carers and autistic people/people with autism often talk about the difficulties they experience with sleep; whether that be in terms of not getting enough sleep, finding it hard to fall asleep or finding it hard to stay asleep [1] [2]. We have worked with many carers and autistic people who talk about the emotional and financial burden of lack of sleep [3] [4].  This page is all about giving you a bit of peace of mind, to reassure you that you are not alone, and to offer some helpful strategies.  To ensure that you are armed with all the information, we have included research to support some of the stuff that we talk about, which can be found at the end of this page.  So, read on for detailed information about why sleep difficulties are so common in the autistic community and some strategies to help.
Or, if you are short of time (or sleep!) and need some easy reading, take a look at our handy poster or leaflet.

WHY Are Sleep Challenges Common in Autism?

It is still unclear why autistic people/people with autism struggle with sleep. There are argued to be three underlying factors that may relate to these sleep challenges: [5]
1) Some researchers talk about the impact of our hormones (e.g., melatonin) and our brains, which have an impact on when our body feels like it should/needs sleep.
2) Other research suggests the impact of psychological factors, such as anxiety or impulsivity (for example, if also diagnosed as ADHD).
3) Sleep may also be impacted by social factors, as difficult sleep has been associated with behavioural difficulties and poorer family functioning.
However, it is important to remember that lack of sleep can also cause some of these challenges. In essence, sleep and autism is a complex one, but what do we do if we/our family are struggling with a lack of sleep?

What Has Been Shown to Help?

The impact of sleep on the autistic community has been heavily talked about- in terms of how a lack of sleep impacts carers and autistic peoples day-to-day functioning, and ability to work [4] [6] [7]. Carers have also talked about how lack of sleep can exasperate sensory challenges and increase risky behaviours [8].

In Northamptonshire, Sleep Right  offer sleep support for families of children with special educational needs and/or disabilities aged 2-18.  They will talk you through the available options including a 1:1, 6 week parent support programme and/or potential medical treatments (such as Melatonin). For information on this referral pathway, click here.

However, by the point of referral many families are already severely sleep deprived, and therefore requiring more immediate support.

What can we do in the meantime?  

We reached out to autistic carers asking for their tips on ensuring the best night's sleep.

All of the carers that we spoke to mention the importance of creating a sleep environment that helped with getting to sleep or maintaining sleep.

There are several techniques that carers used for this:
• One tip for this was to create white noise [8] to drown out external noise by using fans or binaural beats to prevent outside disturbance (particularly if the person is very sensitive to noise).
• As well as this, blackout curtains were reported to be useful as a way of preventing early waking due to external light [9].
• Use of certain smells, such as in lavender oil [10], could also be used as aromatherapy to aid in sleep.
• Finally, decompression/weighted blankets [11] were mentioned by many carers as they helped with sensory difficulties – however, it is important to check the suited weight requirement for the user to ensure safety. You can find some information about this weight here.

Carers also talked about the need for good pre-sleep practices:
• Carers emphasised the importance of developing a regular sleep routine structured around your own needs [12]. For example, you can adapt our visual sleep schedule to what works for you. Remember, dependent on the age of the autistic person, it’s helpful to create this schedule together, easing anxiety around sleep and giving them a sense of ownership/control[13].  
• Other carers also talked about stimulating activities before bedtime to become mentally or physically tired, although it was mentioned that avoidance of blue light (such as tablets or phones) was best. Some useful fine motor skill tasks are suggested here.

Use of sleep conducive foods and medicine was also mentioned:
• Carers, Sleep Right and the research talked about the importance of eating ‘sleepy foods’ before bedtime [14].
Here are a list of some useful foods, and some fun recipes!
• Being prescribed melatonin [15] or certain supplements [16, 17] was also mentioned as beneficial.
However, it is important that the use of prescriptions/change in the autistic person's diet is done in consultation with Sleep Right and/or a medically trained professional.

Autistic people also talked about the benefit of pets, distraction (e.g., reading, not placing too much focus on getting to sleep) and co-sleeping [13].  
However, remember what works for one person, will not work with another! This is just about arming you with the tools to make your own decisions as a family/autistic individual.

For more information on Melatonin, click here.

For more information on Behavioural Support, please
click here.

12 Steps to Good Sleep Practice

Check out some top tips for establishing a successful sleep routine HERE

Relaxation

One of the keys to good sleep is being able to relax. Here are some ideas to get you started.

Top Tips for Tackling Sleep

There are many reasons why your child may not be going to sleep or may be waking during the night. Do you recognise any of the following as being an issue for your child?

Teen Bedtime Routine

HERE is a suggested bedtime routine for your teenager.

Matthew Walker is a sleep research scientist and author of the bestselling book, 'Why Sleep Matters'.
His 2019 TED talk on the subject of sleep has over 7 million views - definitely worth a watch?

Sleep Right Podcasts

As well as providing invaluable sleep support, Sleep Right also do podcasts!
Click HERE to listen ...

References:
1 Cortesi,F., Giannotti, F., Ivanenko, A., & Johnson, K. (2010). Sleep in children with autistic spectrum disorder. Sleep medicine11(7),659-664.
2 GailWilliams, P., Sears, L. L., & Allard, A. (2004). Sleep problems in children with autism. Journal of Sleep research13(3), 265-268.
3 Arber,S., & Venn, S. (2011). Caregiving at night: Understanding the impact on carers. Journal of Aging Studies25(2), 155-165.
4 Wiggs,L., & Stores, G. (2001). Behavioural treatment for sleep problems in children with severe intellectual disabilities and daytime challengingbehaviour: effect on mothers and fathers. British journal of healthpsychology6(3), 257-269.
5 Richdale,A. L., & Schreck, K. A. (2009). Sleep problems in autism spectrum disorders: prevalence, nature, & possible biopsychosocialaetiologies. Sleep medicine reviews13(6), 403-411.
6 McLean,K. J., Eack, S. M., & Bishop, L. (2021). The impact of sleep quality on quality of life for autistic adults. Research in Autism SpectrumDisorders88, 101849.
7 Adlington,K., Nanan, R., & Liu, A. J. (2006). Sleep disturbances in the disabled child: a case report and literature review. Australian family physician35(9).
8 Vriend,J. L., Corkum, P. V., Moon, E. C., & Smith, I. M. (2011). Behavioral interventions for sleep problems in children with autism spectrum disorders: current findings and future directions. Journal of pediatric psychology36(9),1017-1029.
9 Mostafa,M. (2014). An Architecture for Autism: Application of the Autism ASPECTS Design Index to Home Environments. International Journal of the ConstructedEnvironment4(2).
10 Fismer,K. L., & Pilkington, K. (2012). Lavender and sleep: A systematic review of the evidence. European Journal of Integrative Medicine4(4),436-447.
11 Gee,B. M., Peterson, T. G., Buck, A., & Lloyd, K. (2016). Improving sleep quality using weighted blankets among young children with an autism spectrum disorder. International Journal of Therapy and Rehabilitation23(4),173-181.
12 Reynolds,A. M., & Malow, B. A. (2011). Sleep and autism spectrum disorders. PediatricClinics58(3), 685-698.
13 PDASociety. (2022). PDA & Sleep – survey results https://www.pdasociety.org.uk/pda-sleep-survey-results/
14 St-Onge,M. P., Mikic, A., & Pietrolungo, C. E. (2016). Effects of diet on sleep quality. Advances in nutrition7(5), 938-949.
15 Braam,W., Smits, M. G., Didden, R., Korzilius, H., Geijlswijk, I. M. V., & Curfs,L. M. (2009). Exogenous melatonin for sleep problems in individuals with intellectual disability: a meta‐analysis. Developmental Medicine &Child Neurology51(5), 340-349.
16 Huss,M., Völp, A., & Stauss-Grabo, M. (2010). Supplementation of polyunsaturated fatty acids, magnesium and zinc in children seeking medical advice for attention-deficit/hyperactivity problems - an observational cohort study. Lipidsin health and disease9(1), 1-12.
17 Dosman,C. F., Brian, J. A., Drmic, I. E., Senthilselvan, A., Harford, M. M., Smith, R.W., ... & Roberts, S. W. (2007). Children with autism: effect of iron supplementation on sleep and ferritin. Pediatric neurology36(3),152-158.

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Disclaimer: En-Fold does not endorse treatments, interventions and therapies but lists them so people can make informed choice. This site is for information purposes only and is a starting point for readers to look into options that may fit or resonate. Remember, therapies for autism, like any condition, should be discussed with a trusted medical practitioner or certified therapist before use. All information, data and material contained, presented or provided here is for general information purposes only and is not to be construed as reflecting the knowledge or opinions of En-Fold, or as providing legal or medical advice. All treatment decisions should be made by the individual in consultation with a health care provider. Case studies provided are done so in good faith, and based on the personal experience of the individual submitting them. En-Fold are in no way endorsing the establishments that are mentioned but offering peer reviews to inform readers.