Sleep Challenges in Developmental Disabilities

 Photo by Annie Spratt on Unsplash

Sleeping issues are often reported among the developmental disability population and are particularly prevalent in children and youth on the autism spectrum, affecting up to 80 percent of this population ^[1]. It is important to support optimal sleep because sleep disturbances are associated with daytime behaviours such as aggression, hyperactivity, impulsiveness and irritability ^{[1, 2]}.

This toolkit aims to summarize our current knowledge around sleep differences in individuals with developmental disabilities, highlight the importance of addressing these to support and improve sleep as well as daytime functioning and provide an overview of evidence-based strategies that can be tried at home. Additional resources, including a Sleep Habits Assessment Questionnaire, are provided along with recommended online tools and websites. If you don’t have time to read through the entire toolkit, we have summarized the major points in our “How to Promote Better Sleep” handout here.

Case Study: Peter

Peter is a 12-year-old boy on the autism spectrum who is struggling with various sleep-related issues. Peter varies greatly in his sleep schedule, routine, and bedtime.  He appears very drowsy during the day and has fallen asleep at school. Although he is by all accounts tired during the day, Peter still struggles to fall asleep and stay asleep through the night. Most evenings, Peter continues to watch television or play video games until he falls asleep and his mother, Vanessa, has heard Peter walking around his room in the middle of the night. Vanessa has often wondered whether Peter’s sleep challenges and his autism might be related.

Is there a Link between Sleep and Autism?

Sleep issues are commonly reported among the developmental disability population ^{[3, 4]}. One study reviewing existing literature found that sleep issues occur in 50-80% of children on the autism spectrum as compared to 9-50% of their peers in the neuro-typical population ^[1].  Another study reported that 78% of children on the autism spectrum experience sleeping issues ^[5]. In a review of data from large scale studies having 1000 or more participants, sleep problems reportedly occurred in between 32% and 71.5% of children and adolescents on the autism spectrum ^[6]. Of interest, nearly a third of all individuals with Down Syndrome in the sample reported a sleep issue ^[7].  It is important to note that children on the autism spectrum in one study sample had more sleep disturbances, took longer to fall asleep, had more parasomnias (a broad term covering several night time disturbances such as nightmares, night terrors, and sleepwalking, among others) and were reportedly more sleepy during the day ^[4]. In a review of existing evidence, it was reported that insomnia appears to occur in children on the autism spectrum at 2-3 times the rate it occurs in their typically developing peers, affecting as many as 60-86% of children with autism ^[8].

Sleep Issues in Autism Compared to Intellectual Disabilities

            Research suggests overlap between sleep issues in individuals on the autism spectrum and those with intellectual disabilities (ID), but with some key differences ^[1]. For instance, individuals on the autism spectrum most often experience issues that are more strongly associated with anxiety, difficulties with sleep initiation, establishing bedtime routines, and a tendency to fixate on daytime events ^[1]. Additionally, the use of melatonin has been shown to provide positive sleep results in people on the autism spectrum (see more information about melatonin later on in this toolkit) than in people with intellectual disability ^[1]. It has also been noted that sleep issues may be more common in individuals diagnosed with autism spectrum disorder (ASD) plus intellectual disability when compared to those diagnosed with ASD only, but further research in this area is needed ^[6].

            One night, when walking by Peter’s room, Vanessa hears what sounds like Peter making choking noises. She runs into his room to find Peter lying in bed, awake and seemingly startled. Peter tells his mother that nothing is wrong, but Vanessa is concerned and schedules a meeting with Peter’s Paediatrician.

The Paediatrician asks Peter and Vanessa many questions about Peter’s sleep habits, including whether Peter snores, wakes up making these ‘choking’ sounds frequently, and if he seems well-rested in the morning. Vanessa realizes that Peter has been exhibiting some of these characteristics for some time including frequent snoring, and the Paediatrician refers Peter to a specialist sleep clinic.

After some tests, the sleep specialist at the sleep clinic confirms that Peter experiences obstructive sleep apnea and will require a ‘continuous positive airway pressure’ machine, more commonly known as a CPAP machine. The specialist teaches Peter and Vanessa how to use a CPAP machine, supports Peter in becoming more comfortable with wearing the CPAP face mask, and with remembering to put it on before bed. A visual schedule showing the sequence of steps to use the CPAP machine is implemented to assist Peter in completing each step.

The specialist explains that, by using the CPAP machine, Peter may experience higher quality sleep which may result in better overall functioning during the day.

Why Are Sleep Disorders More Common in Individuals on the Autism Spectrum?

Sleep disorders are more common in the developmental disability population, with some studies suggesting that sleep issues may in fact be an early sign of autism ^[6]. Some of the reasons people on the autism spectrum experience increased levels of sleep disturbances include: differences in brain biology, the presence of heightened levels of anxiety ^[11], issues with melatonin production (the hormone that helps us with falling asleep), difficulties with communication skills affecting a child’s understanding of the parents’ expectations related to going to bed and falling asleep ^[2], as well as the person’s experience of sensory processing differences ^[8] which may negatively impact sleep quality.

The Impact of Sleep Issues on Children on the Autism Spectrum and their Families

Researchers have found that a lack of sleep can impact:

• mood ^{[7, 8]}
• cognition ^[1]
• memory ^{[1, 8]}
• attention ^[8]
• learning ^[1]
• health-related quality of life ^[6]
• behaviours ^{[1, 3, 4, 7-9]}

A lack of sleep may also be related to suicidal behaviours ^[10].  Nighttime awakenings in particular appeared to have the strongest correlation with behavioural issues, and thus should be prioritized when seeking sleep supports and interventions ^[9].  

Health Concerns

Sleep issues may also be impacted by underlying health issues, such as obesity ^[7]. Furthermore, some sleep issues, such as sleep apnea, can have longer term health effects ^[7]. For example, in a study of adults with Down Syndrome, those who reported behavioural sleep disturbances were found to experience more significant physical and mental health challenges such as anxiety and depression ^[7], and reported more overnight hospital and emergency department visits ^[7].

Effects on Parents and Caregivers

For parents of a child with a developmental disability who experiences sleeping issues, increased stress ^{[4, 5, 11, 12]} and worsened mental health^[6] have been reported, although it is important to note that there is one study which found that parents of children on the autism spectrum did not report additional stress related to sleep issues ^[5]. Since it is not surprising then that parents of children on the autism spectrum report poorer sleep quality for themselves ^[11], it is important for families to seek sleep education and supports as early as possible in order to mitigate negative long-term effects on mental and physical health. 

Vanessa and Peter are pleased to discover that Peter is less drowsy during the day since beginning his use of the CPAP machine. Vanessa feels encouraged and is interested in trialing other sleep recommendations. For example, Vanessa would like to know how to best address Peter’s resistance to falling asleep in the first place. The specialist works with the family to develop a bedtime routine with the aim of calming and relaxing Peter in preparation to going to bed. This routine includes ending ‘screen time’ at least an hour before bed, and ensuring specific foods and beverages are avoided before bed. The specialist also suggests that Vanessa consult Peter’s doctor to inquire about the possibility of introducing over the counter melatonin supplements. He also recommends making some adjustments to Peter’s bedroom to improve his sleeping environment such as creating a more calming space.

What is Melatonin?

In terms of treating sleep issues, existing evidence supports educational and behavioural strategies commonly known as ‘sleep hygiene’ interventions. Pharmacological interventions may also be employed ^[1], with the most promising evidence pointing towards the use of melatonin in the form of a dietary supplement ^{[2, 6, 8]}. Other pharmacological interventions need additional research ^[1].

Melatonin is a hormone that our bodies produce naturally, and helps with the timing of our circadian rhythms (internal body clock). It is believed to help put us into a calm, restful state. When we are on a regular sleep schedule, levels of melatonin rise in the evening about 2 hours before we go to bed. However, our natural melatonin production can be blocked by being exposed to bright lights at night. We can promote natural melatonin levels by getting exposure to daylight in the morning and afternoon through activities such as walking outside or sitting next to a sunny window, for example. It also is important to keep the lights low to prepare the body for sleep. This is why it is often suggested that people move away from using screens at least one hour before bed as the blue and green light from these devices can work against our natural melatonin’s effectiveness. While it is thought that our bodies’ produce enough melatonin for sleep on their own, melatonin can be taken as a dietary supplement to help promote our own melatonin’s sleep-inducing effects. While melatonin has been found to have positive effects on sleep initiation and duration among autistic people ^[13], it is important to check with an individual’s paediatrician or general physician prior to considering taking this supplement as it can interact with certain medications.

Strategies to address Sleep Issues

Researchers have outlined a variety of evidence-based strategies that address sleep challenges in individuals on the autism spectrum ^[1].  For insomnia, anxiety or depression, consultation with a practitioner in child psychology or child psychiatry, and a sleep specialist are recommended, along with potential pharmacological interventions. For delayed sleep onset, the administration of melatonin (under medical guidance) may be recommended. For parasomnia, epilepsy, sleep apnea, restless leg syndrome pharmacological intervention is recommended, along with possible additional investigations or referrals to specialists.

It might also be helpful to consult The Children’s Sleep Habits Questionnaire (Short Version). This questionnaire has only been validated in English. https://depts.washington.edu/dbpeds/Screening%20Tools/Childrens%20Sleep%20Habits%20Questionnaire.pdf to help identify the behaviour or behaviours that interfere the most with a good night’s sleep. There is a different questionnaire, called Echelle de dépistage des troubles du sommeil de l'enfant de 6 mois à 4 ans, that asks questions that touch on similar themes and has been validated for French speakers. https://sommeilenfant.org/images/biblio/SDSCSHSC2020.pdf

Research has demonstrated that a combination of environmental and behavioural strategies commonly known as ‘sleep hygiene’ strategies can be effective in improving overall quality of sleep particularly in young childrenhttps://hollandbloorview.ca/sites/default/files/migrate/files/ATNAIRPPhysicianASDSleepToolkitHandout.pdf.

Components of Successful Sleep Hygiene

Environmental factors that positively affect sleep include: using age-appropriate visual supports to establish bedtimes routines, reviewing visual sleep schedules with your child, remaining consistent with setting bed times and awake times, and limiting uncomfortable sensory stimulation. Researchers in fact emphasize that, “given their preferences for sameness and routine, children on the autism spectrum may adapt well to the establishment of bedtime routines, especially if visual schedules are implemented” ^[2].

For specific strategies that address environmental sensory factors that should be considered such as light, temperature and sound, please consult: The Children’s Best Bedroom Environment for Sleep (CBBES) guide is currently only available in English: https://250c6e3c-6fde-4eaf-b001-7f1da296a421.filesusr.com/ugd/04eb69_fed54157f6c541999c40fc96f8066e45.pdf

There are several recommended behavioural sleep hygiene strategies that parents can implement. Among others, recommendations include establishing a bedtime routine, adding simple relaxation techniques to the bedtime routine, limiting beverages containing caffeine such as soft drinks or other ‘alerting’ sugary drinks, incorporating physical exercise opportunities during the day, supporting the child to move towards falling asleep on their own, and removing electronics at least one hour before bedtime among others (please see recommendations listed at the end of this toolkit for more details).

Recent research conducted with autistic adolescents recommend some innovative strategies that parents of teens may want to consider particularly as adolescents on the autism spectrum are “vulnerable to lifelong sleep problems, irrespective of their IQ” ^[14]. Strategies discussed in this article : https://www.frontiersin.org/articles/10.3389/fpsyg.2020.583868/full?utm_source=F-NTF&utm_medium=EMLX&utm_campaign=PRD_FEOPS_20170000_ARTICLE

include facilitating personalized sleep habits that take into account the teen’s sensory preferences — even when this means that sleep hygiene strategies are not strictly followed. For example, this might entail: the teen been allowed to eat preferred foods or have drinks prior to bed due to a preferred texture or a specific sensory quality, enabling the teen to identify preferred bedding and clothing they want to wear to bed and allowing them to smell a preferred scent prior to going to bed.  These suggestions were found to be helpful in achieving a good night’s sleep. This study also included some other self-directed and repetitive activities that were deemed helpful by autistic adolescents that may be of interest to parents and or caregivers. The study was only published in English, but some English-to-French text translation apps may be helpful for French speakers interested in reading the article.

Moving Forward

In advancing practices related to sleep, it is recommended that service providers include sleep concerns as part of their screening process with parents, as a good sleep can result in improved well-being and behaviour during the day which consequently may positively impact the parents’ or caregivers’ mental health ^{[2, 12]}. Parents are encouraged to discuss their child’s sleep patterns during regular visits to their doctor so that they can monitor changes and make recommendations. Medical conditions that can impact sleep should also be screened for ^[2]. Lastly, since sleep quality is now recognized a strong predictor of quality of life ^{[15, 16]}, additional research is needed in exploring sleep issues across the lifespan among individuals on the autism spectrum, particularly in the very young, adults, and older adults, as there have been relatively fewer studies in those age groups ^[6].

New Online Resource: Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD)

While many sleep-aid apps are available to download on your phone, few have focused on the unique approaches and practices that can help individuals with intellectual disability and/or those on the autism spectrum. The Better Nights Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD) program is an online behavioural program that addresses sleep problems. It was developed in Canada by sleep specialists and has undergone rigorous scientific testing.

Evidence supports the effectiveness of behavioural treatments for insomnia. However, these interventions are not often discussed with families of children with neuro-developmental disabilities because referrals to sleep specialists are not common for that age group. Developed by Dr. Penny Corkum (Dalhousie University; IWK Health Centre), Dr. Shelly Weiss (University of Toronto; SickKids), and their colleagues at institutions across Canada, this online sleep intervention program, Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD), offers a potential solution to address this challenge.

BNBD-NDD is an evidence-based online program specifically developed to meet the needs of parents of children ages 4-12 years old with Autism Spectrum Disorder (ASD), Attention-Deficit/Hyperactivity Disorder (ADHD), Cerebral Palsy (CP), and Fetal Alcohol Spectrum Disorder (FASD) who experience insomnia. The program can be completed by parents at a time and place that is convenient for them and is accessible from their desktop, laptop, tablet or smartphone. Over the course of five sessions, users will learn about healthy sleep practices and routines, as well as behavioural strategies tailored for the child’s sleep problem. BNBD-NDD is designed to empower parents to improve their child’s sleep on their own, with the support of tools including sleep diaries, personalized goal setting and tracking, and tailored feedback on individual progress. The BNBD-NDD program can guide parents in helping their children to sleep better so that they can achieve the best academic outcomes.

To learn more about the BNBD-NDD program, visit http://ndd.betternightsbetterdays.ca/.

A Summary of Recommended Strategies for Parents:

Activity #1 – Consider the Sleep Setting

This is an activity designed to help you explore and think about your child’s sleep setting. Some of these items may seem obvious, but others are often overlooked. As per the Autism Treatment Network’s toolkit, consider the following:

• What is the temperature in your child’s room? Studies have shown that children sleep best in temperatures between 18-21 degrees Celsius.
• Is there light entering the child’s room at night, such as a streetlight through their window? Is it possible to minimize this further, such as by installing ‘blackout’ curtains?
• What is the noise level like in your child’s room? Does she/he find certain types of consistent or ‘white noise’ soothing, or, alternatively, does she/he find these noises distracting?
• Try out different clothing, sheets, or blankets. Does your child’ seem to respond better to different types, weights, fabrics, etc. of bedding or the clothing worn to bed?
• Are there distracting items present in the sleeping area, such as desired or enticing toys?

The following video, produced by the Autism Treatment Network, demonstrates characteristics of an ideal sleep setting: https://www.youtube.com/watch?v=M63TYpzB6Rs

Activity #2 – Establish Bedtime Routines

For many people on the autism spectrum, consistent bedtime routines may help improve sleep. Please see our “Getting Ready for Bed” handout to use as a visual schedule with your child. Based on the Autism Treatment Network’s recommendations,¹⁴ consider the following:

• A bedtime routine should not last more than an hour and it is best to complete this routine in the child’s sleeping area as much as possible.
• The bedtime routine is intended to help relax your child and prepare them for sleep. Exciting activities like video games and physical exercise are not recommended during this period. Consider relaxing activities that your child might enjoy instead such as a massage, listening to soothing music, etc.
• Children are calmed further when there is predictability within the bedtime routine which means that the routine should follow the same sequence at the same time whenever possible.
• Some children and families benefit from having a visual schedule/reminder of the bedtime routine activities or sequence of steps that need to be completed. See the downloadable schedule entitled, “Getting Ready for Bed”.
• To establish a bedtime routine, trial and error may be needed, with room for revision, as required. For instance, while a bath may be soothing for some children, others may find a bath stimulating, thus making it harder to relax before bed. In the second instance, this activity could be conducted earlier in the day.
• This Autism Treatment Network’s video demonstrates how to set up a bedtime routine
• For adolescents, consider supporting their sleep autonomy by facilitating and personalizing sleep routines. For example, an adolescent may find a nightly massage or taking a warm bath relaxing. It is best to collaborate with your teen and come up with a plan together as to what is the best nightime routine for them – even if that might differ from more traditional sleep hygiene strategies.

Activity #3 – Incorporate Relaxation Techniques

Once you have ensured a proper sleep setting and established a consistent bedtime routine, you can begin to include relaxation techniques to help your child fall asleep and remain asleep. Try reading the script below to your child each night until your child is able to make these steps a habit. This guided relaxation script has been shown to help with falling asleep for many people, but may be less successful for individuals that struggle with anxiety. Remember that it can take a few weeks of practice before you notice an improvement.

• “Relax the muscles in your face. Make sure to relax your tongue, jaw, and the muscles around your eyes.” If your child struggles with this, you can say: “If you are not sure if you have relaxed your face, try scrunching your face up tight and holding it for 5 seconds before letting the muscles go.”
• “Drop your shoulders as far down as they’ll go, and then your right upper and lower arm, and then your left upper and lower arm.” If your child is unsure as to what this means, you can say: “If you are not sure if you have relaxed them, shrug your shoulders as close to your ears as possible, hold for 5 seconds, and then relax them down as far as they will go.”
• “Take a slow, deep breath as if you were smelling a flower and then blow out as if you were blowing out a candle. Relax your chest as you breath out, then your thighs, and then your calves, and finally relax your feet.” If your child struggles with this step, you can say: “If you are not sure if you have relaxed your legs, then squeeze the muscles in your thighs, calves, and curl your toes for 5 seconds before you relax them again.”
• Try having your child imagine being in a peaceful setting. One example would be to imagine lying in a boat on a calm lake while looking at the clear blue sky above. Another example is to imagine lying in a soft, warm hammock in a pitch-black room. Whatever the setting, it should be something that calms your child without getting them too excited or energized (for instance, refrain from suggesting they imagine themselves to be at the pool if they are usually very active when they are there). It may take a few trials to figure out the best setting, but with practice this visualization may help your child fall asleep faster.

Activity #4 – Address Difficulties with Staying Asleep and/or Waking Up Too Early

People on the autism spectrum often have trouble staying asleep and may wake up too early, which may contribute to irritability and behavioural challenges during the day.  The following are a number of strategies that families can try:

• Remember to raise any potential sleeping concerns or questions with a healthcare professional as soon as possible as there may be other conditions such as depression that may be causing some of the sleep disturbance.
• Be aware that some medications such as stimulants often recommended to treat symptoms of Attention Deficit Hyperactivity Disorder (ADHD) can disturb sleep. Speak with your pediatrician to check into the timing of medication being given and if that needs to be changed to better support sleep initiation and duration.
• Melatonin can be an effective treatment in autism as it may help with sleep initiation & duration (if long-acting). Please check with your child’s doctor if considering using melatonin as it can interact with certain medications.
•  Identify a realistic goal. For instance, if a child has been sleeping in the parent’s bed, it may be realistic to start by having the child sleep in a separate bed in the parent’s room and then slowly move the child’s bed towards the child’s bedroom until the child is in his/her own bedroom. This technique is called ‘shaping’ and it is an evidence-based strategy that helps children move towards a goal in small achievable increments. 
• Another evidence-based technique is called the ‘bedtime pass’ ^[17] and it works as follows: Every night, parents and/or caregivers give their child a card with a preferred picture that they can call the ‘bedtime pass.’ Explain to the child that they can use the pass once during the night to get some water or receive another cuddle. After the pass is used, the child is encouraged to not leave the bedroom again (except if they need to use the bathroom), The child is rewarded in the morning with a preferred activity if she/he kept the bedtime pass.
• If a child awakens too early in the morning and does not return to sleep for the night, it may be beneficial to use a visual clock that differentiates between daytime and nighttime. Parents have reported success with clocks that light up or show a sun symbol when it is time to wake up. You can encourage your child to “stay in your bed until the sun comes up!”.
• Consider that all teens have a ‘schedule change’ when they go through puberty. What we call their “clock” shifts; they often are not as tired or more inclined to sleep at usual times, and may want to sleep later in the morning. Try moving your teen’s bedtime later by half hour increments.  In general, encourage your teen to maintain the same bedtime and wake time every day, with no more than an hour’s difference between weekdays and weekends. Consider offering a reward to the teen for keeping his/her bedtime routines. A reward could include: watching special show, a walk with the family, a trip to the mall, or anything else that the teen enjoys.

Conclusion

We hope this toolkit has provided useful information for you to try at home. Quality sleep is an important aspect of maintaining good physical and mental health and overall quality of life. Remember to consult with your child’s physician if you have concerns about your child’s sleep habits and health. May your family experience better sleep and health!

References

1.        Kotagal, S. and E. Broomall, Sleep in children with autism spectrum disorder. Pediatric neurology, 2012. 47(4): p. 242-251.
2.        Malow, B.A., et al., A practice pathway for the identification, evaluation, and management of insomnia in children and adolescents with autism spectrum disorders. Pediatrics, 2012. 130(Supplement 2): p. S106-S124.
3.        Hirata, I., et al., Sleep problems are more frequent and associated with problematic behaviors in preschoolers with autism spectrum disorder. Research in developmental disabilities, 2016. 49: p. 86-99.
4.        Levin, A. and A. Scher, Sleep problems in young children with autism spectrum disorders: A study of parenting stress, mothers' sleep‐related cognitions, and bedtime behaviors. CNS Neuroscience & Therapeutics, 2016. 22(11): p. 921-927.
   
5.        Valicenti-McDermott, M., et al., Parental stress in families of children with autism and other developmental disabilities. Journal of child neurology, 2015. 30(13): p. 1728-1735.
6.        Deliens, G., et al., Sleep disturbances in autism spectrum disorders. Review Journal of Autism and Developmental Disorders, 2015. 2(4): p. 343-356.
7.        Esbensen, A.J., Sleep problems and associated comorbidities among adults with Down syndrome. Journal of Intellectual Disability Research, 2016. 60(1): p. 68-79.
8.        Souders, M.C., et al., Sleep in children with autism spectrum disorder. Current psychiatry reports, 2017. 19(6): p. 34.
9.        Mazurek, M.O. and K. Sohl, Sleep and behavioral problems in children with autism spectrum disorder. Journal of autism and developmental disorders, 2016. 46(6): p. 1906-1915.
10.        Lopes, M.C., et al., Sleep complaints as risk factor for suicidal behavior in severely depressed children and adolescents. CNS neuroscience & therapeutics, 2016. 22(11): p. 915-920.
11.        Meltzer, L.J., Brief report: sleep in parents of children with autism spectrum disorders. Journal of pediatric psychology, 2008. 33(4): p. 380-386.
12.        Roberts, C.A., J. Hunter, and A.-L. Cheng, Resilience in families of children with autism and sleep problems using mixed methods. Journal of pediatric nursing, 2017. 37: p. e2-e9.
13.        Gringras, P., et al., Weighted blankets and sleep in autistic children--a randomized controlled trial. Pediatrics, 2014. 134(2): p. 298-306.
14.        Pavlopoulou, G., A Good Night’s Sleep: Learning About Sleep From Autistic Adolescents’ Personal Accounts. Frontiers in Psychology, 2021. 11(3597).
15.        Deserno, M.K., et al., Sleep determines quality of life in autistic adults: A longitudinal study. Autism Res, 2019. 12(5): p. 794-801.
16.        Papadopoulos, N., et al., The Efficacy of a Brief Behavioral Sleep Intervention in School-Aged Children With ADHD and Comorbid Autism Spectrum Disorder. J Atten Disord, 2019. 23(4): p. 341-350.
17.        Friman, P.C., et al., The bedtime pass: An approach to bedtime crying and leaving the room. Archives of pediatrics & adolescent medicine, 1999. 153(10): p. 1027-1029.