About INSAR:
The International Society for Autism Research (INSAR) Conference is the largest autism research conference in the world. The 2025 conference took place April 30 – May 3 in Seattle, Washington. This conference is a mixture of oral presentations, panel discussions, poster sessions, and special interest group meetings on topics important to the autism and research communities. Topics for the conference are submitted by researchers and autism community members and chosen by the INSAR committee.
INSAR 2025 Session: Sleep Problems – From Brain to Behaviour in Clinical Measurements
Presentation: Sleep Problems in Autistic Children at the Time of Psychiatric Hospitalization in Relation to Parenting Stress and Parental Self-Efficacy (#303.001)
Presenting Author: B. J. Taylor, Northeastern University
Additional Authors: K. A. Pederson, Maine Health, Tufts University School of Medicine; M. Siegel, Boston Children’s Hospital
Study Background:
Sleep challenges are a common complaint of Autistic individuals and their families. Previous research has shown that the more sleep problems a child has, the more challenging behaviours they will have during the day and the more likely they are to be hospitalized in a psychiatric facility. Importantly, sleep challenges are one of the biggest predictors of parental stress and reduced parental self-efficacy (e.g., how good of a job parents think they are doing as parents). This means that children who get less sleep are more likely to have stressed parents who think they are not able to support improving their children’s behaviours or development, even if their daytime behaviours are the same1.
INSAR Presentation: How do sleep challenges relate to parental stress?
The parents of 479 autistic children who were admitted to psychiatric inpatient units participated in this study. They were asked to fill out questionnaires about their child’s sleep difficulties, parental stress, and perception of their child’s behavioural challenges. The researchers then did statistical analyses to see how sleep issues were related to the stress and confidence parents had that they could support their child.
Researchers found that while all types of sleep challenges were associated with parents’ perceptions of their parenting stress and efficacy, the frequency of nighttime awakenings was most associated with parental stress. The more sleep challenges a child experiences, especially for those who do not sleep through the night, the worse off the parental stress levels. The study authors conclude by recommending that future researchers and clinicians explore sleep solutions that can increase the well-being of the entire family.
General Background: What are the different types of sleep challenges in children?
Sleep challenges can show up in different ways. Some children may fall asleep quickly but will wake up frequently throughout the night. Others may struggle to get to sleep and then have problems waking up in the morning. Below are descriptions of six common types of sleep challenges in children and adolescents:
- Disorders of initiating and maintaining sleep: Commonly called insomnia, people with this disorder have trouble falling asleep and/or may wake up frequently throughout the night. It is considered ‘chronic insomnia’ if a person experiences these sleep challenges at least three times per week for at least three months.
- Sleep breathing disorders: People may temporarily stop breathing throughout the night, wake up gasping, snore very loudly, and be excessively tired throughout the day. There are multiple possible causes to sleep breathing disorders, including central sleep apnea (where the brain does not send the signal to the muscles that control breathing) and obstructive sleep apnea (where the breathing pathway is partially or fully blocked). Sleep breathing disorders are most commonly treated with a continuous positive airway pressure (CPAP) machine. In the case of obstructive sleep apnea, doctors may recommend surgery (e.g., nasal surgery, removal of tonsils, etc.) to improve the breathing pathway.
- Disorders of arousal/nightmares: Also called parasomnias, these disorders include talking while sleeping, sleepwalking, sleep terrors, nightmares, waking up confused or afraid, recurrent sleep paralysis, or bedwetting.While most people can experience one or more of these sleep issues occasionally, if these occur frequently enough to impact daily life, then a clinician may order tests to determine potential causes and treatment options.
- Sleep-wake transition disorders: A group of parasomnias that occur when falling asleep or between sleep stages. These include sleep talking, sleep starts (sudden muscle twitches or jerks), rhythmic movement disorders (head banging, rocking), sleep paralysis, and nocturnal leg cramps.
- Disorders of excessive somnolence: Also called hypersomnia, children with these disorders have a hard time staying awake during the day, even if they have had a full night’s sleep. A child may fall asleep several times during the day, feel tired most of the day, feel confused or angry when waking up, have memory problems, and struggle to concentrate or stay focused.
- Sleep hyperhidrosis (nighttime sweating): The sweating can be considered ‘local’ (e.g., excessive sweat in just one area) or ‘general’ (e.g., excessive sweating over the entire body). People with excessive sweating throughout the night tend to perceive their sleep as less restful and may wake more frequently due to thirst or discomfort.
How can we measure sleep challenges in Autistic children?
The Sleep Disturbance Scale for Children (SDSC) provides scores for six forms of sleep challenges, with higher scores indicating sleep challenges that are ‘clinically relevant’ (e.g., should be discussed with a medical professional)2. Scores can range between 26 and 130. A total score of 39 or higher on the English version (and 37 or higher on the French version3) indicates that the individual is ‘sleep disordered’.
To access the SDCS questionnaire and scoring guidelines, click on the links below:
Sleep Disturbance Scale for Children (SDSC) in English (scroll to Appendix A for questionnaire and scoring guide)
Sleep Disturbance Scale for Children (SDSC) in French (Note, the article is in English, but a French version of questionnaire and scoring guide can be found by scrolling to Appendix A)
What can I do with this information?
Understanding the type(s) of sleep challenges your child or adolescent is facing can be helpful for medical professionals to determine the cause(s) and potential treatment options that may help. Bring a completed SDCS questionnaire with you to your child’s next pediatrician appointment. Consider also filling out a sleep journal that tracks the amount of sleep and any challenges your child has had over the past two or three weeks. The more information your child’s medical professionals have, the more quickly they can come up with a plan to help them get a better night’s rest.
Are there any other resources I can try to help my child sleep better?
AIDE Canada has several toolkits and videos that provide you with more information and may help you and your family develop better sleep practices at home.
Developing Healthy Sleep Habits: Animated Video
Sleep Challenges in Developmental Disabilities Toolkit
Sleep Issues Amont Autistic Adults: A Review of Selected Literature
Dr. Penny Corkum of Dalhousie University has developed a mobile app that can help:
The Better Nights, Better Days
The AIDE Canada Library has some useful book suggestions:
**Please note that this title is only available in French.
References:
- Roussis, S., Richdale, A. L., Katz, T., Malow, B. A., Barbaro, J., & Sadka, N. (2021). Behaviour, cognition, and autism symptoms and their relationship with sleep problem severity in young children with autism spectrum disorder. Research in Autism Spectrum Disorders, 83, 101743.
- Bruni, O., Ottaviano, S., Guidetti, V., Romoli, M., Innocenzi, M., Cortesi, F., & Giannotti, F. (1996). The Sleep Disturbance Scale for Children (SDSC) Construction and validation of an instrument to evaluate sleep disturbances in childhood and adolescence. Journal of sleep research, 5(4), 251-261.
- Lecuelle, F., Gustin, M. P., Leslie, W., Mindell, J. A., Franco, P., & Putois, B. (2020). French validation of the sleep disturbance scale for children (SDSC) in young children (aged 6 months to 4 years). Sleep Medicine, 67, 56-65.
