LIKE all new parents, Ilona Andrews was sleep-deprived and arguing with her husband over who was ‘more exhausted’.
By this point, 33-year-old Ilona was mentally and emotionally drained.
Ilona, who is married to finance worker Shane Andrews, 33, and lives in Kingston tell Sun Health: “It hit everything – my mental health, our relationship, my confidence as a parent.
“We were constantly arguing over who was ‘more exhausted’ and whose turn it was to stay up all night. I stopped exercising. I felt like I didn’t exist anymore outside of trying to get her to sleep.
“At three, it became obvious this wasn’t just ‘bad sleep’. We were told to try earlier bedtimes, later bedtimes, white noise, no white noise – endless advice that didn’t help.
“When a private GP suggested autism spectrum disorder (ASD) and prescribed slow-release melatonin, it was the first time I felt we weren’t fighting this alone.”
Autism is a type of neurodivergence affecting around one in 100 people.
There are at least 700,000 autistic adults and children in the UK, say the National Autistic Society.
The signs usually appear in childhood and can include avoiding eye contact, not talking as much as other kids, not responding to their name or when you smile at them, and repetitive movements (e.g. rocking).
The symptoms can change through childhood and adulthood and generally, people with ASD show differences in how they feel, think and communicate compared to others.
To get an autism diagnosis, a specialist team must agree that a person shows the ‘core characteristics’ of autism.
Sleep can be a problem for people with autism because they struggle to settle, relax, or have irregular secretion of the hormone melatonin, which induces sleepiness in the evening.
Ilona saw three sleep consultants, but none of them could explain why nothing worked.
DISMISSIVE AND CRUEL
SHE says: “All the time. People who weren’t living it were full of opinions. ‘Have you tried singing?’ ‘Maybe she doesn’t need sleep.’ It’s incredibly isolating being told you’re just doing it wrong when your child is suffering.
“I would be told ‘Just put her to bed later’ – when she was already sleeping hours less than an average child. Or ‘maybe she just doesn’t need sleep’.
“No three-year-old thrives on four hours a night. It was dismissive and cruel.”
Ilona explains that her child would have long stretches of time awake.
“There were stretches where she’d be awake from midnight until 4am, then up again at 7am,” she says.
It was a 90-minute meltdown every single night. We were both crying.I walked out of the room and realised: this isn’t normal exhaustion — this is survival mode.
Ilona Andrews
“I was getting as little as four hours of broken sleep a night. It felt like living in a fog. I was so tired my body felt like it was shutting down.”
Iona says the situation was further exacerbated when she gave birth to her son, who is now two.
She says: “When I gave birth to our son, she had a lot of stress from having another baby in the house. She would fight everything for hours. It was so challenging.
“The night she refused to wear pyjamas was when everything cracked. It was a 90-minute meltdown every single night. We were both crying.
“I walked out of the room and realised: this isn’t normal exhaustion — this is survival mode.”
Ilona says the sleep deprivation took a huge toll on both her and her husband, adding “mentally it is hard for everyone”.
“You lose the ability to do things,” she says. “Everyone is very angry and it becomes a battle of who is more tired.
“Everyone is sleep deprived and deregulated.”
Signs of autism in your child’s sleep
- Having difficulty settling, winding down and going to sleep
- Waking repeatedly during the night, or having difficulty getting back to sleep after waking up to go to the toilet
- Increased anxiety or an inability to relax
- Social cueing problems, where an autistic person doesn’t make the connection between others in the house going to bed and their own need to sleep
- Irregular secretion of the sleep hormone melatonin, which regulates sleep patterns, or having atypical circadian rhythms (body clock)
- Neurological conditions such asepilepsy
- Sensory differences, such asincreased sensitivityto blue light from smart phones, or sensitivity to certain sounds or white noise, which may be upsetting or distracting and keep them awake
If a child is struggling with their sleep they might:
- Hhave trouble falling and staying asleep
- Wake up too early and have a hard time getting back to sleep
Ilona recognised her daughter could not stand her to break at all from a very particular routine without melting down.
A “meltdown”, a term used by autistic people, is an intense response to an overwhelming situation which may result in screaming, lashing out or biting.
Preference for routine and predictability is a trait that many people with ASD hold.
Ilona took her daughter to see a private GP, who diagnosed her with ASD and prescribed melatonin.
The medicine can help regulate a sleep-wake cycle in those who do not produce enough of the hormone naturally, or who are having sleep issues.
It wasn’t until Ilona finally found someone who understood neurodivergent sleep needs that everything changed.
Her baby, and she, slept for the first time in months.
FINDING FIXES
ILONA says: “The diagnosis gave us understanding, but it didn’t come with a clear plan.
“Because we’re not under regular specialist monitoring, we’ve had to learn and adjust things like melatonin dosage ourselves over time.
“It’s been a gradual process of fine-tuning what works for her rather than a quick fix, and we’re still improving things bit by bit.”
Ilona, who used to work in finance, re-trained as a sleep consultant and says she discovered a huge blind spot in children’s sleep advice.
She says: “Neurodivergent kids aren’t just ‘hard sleepers’ – their brains process stress, routine, and sensory input differently.
“Some need daytime naps to reset; others lose the entire night if they nap. Many are living in a constant state of anxiety that starts hours before bedtime.”
Now Ilona is working with families facing the same exhaustion she once lived through and has also launched her own brand of children’s sleep aiding sleepwear Sleeping Stars.
She focuses on simple, realistic changes that actually work: reducing sensory overload, using instant visual rewards instead of delayed ones, adjusting routines so they don’t become rigid or overwhelming, and supporting the child’s nervous system during the day – not just at night.