It's no secret how important sleep is, for both children and their parents or caregivers. However, the demands are higher when taking care of a little one with autism. According to various studies, 50-80% of autistic children can suffer from sleeping problems.
According to Evelyn Romero, Manager of Clinical Services and Quality Assurance at Toronto’s Geneva Centre for Autism, the most common sleep issues include difficulty getting to bed and waking multiple times throughout the night. Additional sleep issues include:
These concerns are not only disruptive but can cause daytime sleepiness and additional behavioural or learning difficulties.
I vividly remember singing Tanya Goodman’s "Lullaby for Teddy" to my son Andrew. The song asks the child to close their eyes and then Teddy, a fictional character who is very tired, will also go to sleep.
As I write in Hold on Tight, “I thought Andrew looked forward to this calming lullaby each evening. Only years later did he admit how terrified he had been of the lyrics, believing in his little mind that Teddy was never going to wake up and that he would die. Unbeknownst to me, he was traumatized so many nights, heightening his anxiety.”
When he told me, I felt like an awful mother.
Falling asleep is a behavioural skill. We want to help our children build habits that facilitate healthy sleep and develop life skills toward greater independence. Fortunately, there are organizations like the Geneva Centre that offer free webinars on sleep strategies in addition to providing 1:1 assistance.
The first thing clinicians do is rule out any physical problems, such as gastrointestinal issues. They also determine if any co-occurring mental health or neurodevelopmental conditions are causing difficulties. For example, a child with anxiety may be afraid to be alone at night or a child with ADHD may have trouble staying in bed.
A child with social interaction issues might not recognize that it’s dark outside or their siblings are getting into pajamas. Those with sensory issues might not be able to verbalize their discomfort with noise, their bedroom’s temperature or the feel of their pajamas or pillow.
These issues need to be addressed before dealing with behavioural strategies.
Clinicians then typically ask caregivers to keep a sleep log to identify behaviour patterns and barriers to sleep. Every evening, parents record such information as:
They additionally record facts about the child’s bedroom environment and how long the child’s difficulties have occurred.
As Melanie Willis, Clinical Supervisor at Kerry’s Place Autism Services, notes, the majority of sleep-related problems are caused by a lack of consistency: “Many parents simply don’t realize they are making small changes to their child’s routines until they write it down."
Bedtime routines are critical in creating an environment conducive to sleep. They establish predictability, which gives a child comfort and security.
Based on a child’s patterns, a clinician will work with the parents to develop goals and targeted strategies. Romero says the approach must be child-centred and specific to each family, giving them options that work best for them. Willis adds that accepted cultural practices, such as co-sleeping, are always respected.
It’s so important to follow a consistent routine every evening:
Of course, if none of these strategies works or if your child is engaging in physically aggressive or self-injurious behaviour before bed, seek professional help.
Remember that each child is unique, with their own needs. But do keep to the same schedule, even on weekends if possible. Even better, model good bedtime behaviour yourself!
Jan Stewart is a highly regarded mental health, autism and neurodiversity advocate and Chair of Kerry’s Place Autism Services, Canada’s largest autism services provider.
Her brutally honest memoir Hold on Tight: A Parent’s Journey Raising Children with Mental Illness describes her emotional roller coaster story of parenting two children with multiple mental health and neurodevelopmental disorders.
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