Sleep now recognised as huge quality of life factor for people with Autism Spectrum Disorder

Diane Keenan has tried everything to help her 11-year-old autistic daughter Thalia get a good night's sleep.

And she is not alone.

It's estimated between 50 and 80 per cent of people on the autism spectrum struggle to get enough sleep, according to figures from the Australian Autism Biobank.

Ms Keenan said finding a solution for Thalia wasn't straightforward.

"We tried the room being dark, being light, music on, music off, no screen time before bed, keeping to a consistent bedtime, waking at a consistent time in the morning to keep with the sleep pattern, singing songs before bed, and using a body sock," she said.

"We also used a tight sheet so that Thalia felt like she was having a tight hug, using weighted blankets, using melatonin, using heat packs, a diffuser with calming oils.

"So just the light and sound of the diffuser were going, staying with her until she falls asleep, and checking on her at regular time intervals throughout the night to help her feel secure and safe."

Strict routine key for Thalia

When Thalia was four, her parents thought she was sleeping well, but she often looked tired so they took her to see a sleep and respiratory specialist who organised an overnight sleep study.

"We found out that she had restless leg syndrome, and it was suspected that she also had some night seizures occurring," she said.

Thalia was later diagnosed with epilepsy.

After a lot of trial and error, a solution for Thalia was found by having a strict bedtime routine which she does not deviate from.

Ms Keenan said her daughter's bedtime routine takes about 20 minutes every night.

"She also must get into bed a certain way and the blankets must be just right. She also sleeps with about 30 giraffe toys in her bed, but has her two main ones that she hugs," she said.

Thalia said she also brushes her teeth and flosses, as well as going to the toilet every night before she goes to bed.

"I sometimes go to the toilet again, which means that I have to start my routine from scratch," she said.

"Sometimes I get scared at night which makes falling asleep really hard. I like sleep even though I wake really early in the morning."

But even with this strict routine, Ms Keenan said Thalia sometimes still wakes up tired and sluggish.

When the brain won't switch off

Sleep is an essential factor contributing to the quality of life for people on the autism spectrum.

Professor Valsamma Eapen, chair of the Academic Unit of Infant, Child and Adolescent Psychiatry Services at the University of New South Wales, said autism traits such as repetitive behaviours and sensory sensitivities to light, sound may also result in sleep problems.

"Further, sleep may be impacted due to other occurring issues known to affect sleep such as sleep apnoea and restless leg syndrome." she said.

PhD candidate at the University of Western Australia's Centre for Sleep Science, Melissa Cleary, said there were a range of factors that could affect people on the autism spectrum, with an inability to "switch off" the brain at bed time one of the biggest.

"Behavioural sleep interventions, rather than medications, are considered the first-line treatment for these kind of sleep difficulties." she said.

"There are many sleep strategies than can be used, some of which are relatively easy to implement without the help of a trained health professional."

Ms Cleary said it was important to establish a regular sleep pattern, keeping to the same bedtime and wake time.

"A routine can help the child know when it is time to start winding down and preparing for sleep," she said.

"Whether it is brushing their teeth, taking a bath, or reading a book, if done consistently the child may begin to associate them with winding down for sleep."

Ms Cleary said paediatric sleep specialists, such a sleep psychologists, could help implement more complex behavioural sleep strategies that could be hard to manage without help.

The need for a sleep plan

Clinical psychologist Paul Jeffery said setting a clear routine was crucial.

"Behavioural interventions often involve parents having a clear plan, being willing to take a more assertive position in setting limits and routines for evening and morning and being willing to stick to a plan over time," he said.

Mr Jeffery said researchers were still trying to work out what factors could contribute to a person on the spectrum having sleep issues.

This could mean possible genetic or biological differences in individuals with ASD, including differences in the way melatonin is produced and regulated.

And while finding the right sleep solution isn't always easy — Ms Keenan says getting Thalia the shut-eye she needs makes it all worth it.

Every single night ends on the same sweet note:

Thalia: I love you.

Mum: I love you too.

Thalia: I love you more.

Mum: You win.

 

Source: ABC