Parents of children on the Autism Spectrum

Eating and sleeping

Two areas that parents we talked to consistently discussed were eating and sleeping.

Many parents highlighted eating and mealtimes as everyday activities that were difficult. Many of the children would only eat a limited range of food such as chicken nuggets, chips and crisps. Some were fearful of choking and would eat only soft food or food that was cut up in particular ways. Other children found eating difficult because of sensory sensitivities and they would not eat food that was a particular colour such as red, yellow, green or white or of different textures (see ‘Fears, anxieties, sensory issues and meltdowns’). One parent gave her son Complan to supplement his diet because his taste buds were very sensitive and he found eating various textures very difficult.

Other parents described how their children lacked motor skills and could not use a knife and fork, or they would use a knife and fork only in certain settings. Some children preferred to eat with their hands.

Some parents thought their children’s diets were very limited and raised their concerns with GPs or nutritionists, but the children appeared to be healthy and they were told not to worry. Some parents thought that their children were trying to have some control over their lives by refusing to eat particular foods or use a knife and fork.

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A few of the children ate everything they could find including toy car wheels, raw chicken breasts and raw sausages. In a few cases this was so extreme that parents had to keep food securely locked up. One mother had a fridge in her bedroom because her son enjoyed eating and did not understand when he'd had enough while other parents described locking the kitchen cupboards. One boy had several trips to casualty when he was younger because he ate glass, bleach and the buttons off his clothes.

Sleep was an issue for many of the children and some parents described how ‘sleep deprivation’ was one of the most difficult things they had to deal with. Some children found it very difficult to get to sleep at bedtime while others woke early in the morning and were ready to start the day before dawn.

Some of the older children were still in nappies and this could wake them at night, or they were just out of nappies and conscious of wetting the bed. Some children’s difficulties with going to sleep were related to their fears and anxieties (see ‘Fears, anxieties, sensory issues and meltdowns’). Some had nightmares or were scared of the dark. The children heard voices, saw monsters or colours which disturbed them and parents had to lie down with them until they fell asleep.

Some children seemed to need little sleep. One mother described how soundly her son slept every night but several children slept in their parents’ bed for several years.

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Parents used different strategies to try and help their children sleep better. A few parents used medication, such as melatonin (see ‘Medical and dietary interventions) and felt that they could cope better during the day if their children had a good night’s sleep. One mother, whose son was on melatonin described how; 

He sleeps better, yes, he is still a bad sleeper and he still sleeps with me a hell of a lot, much more than he should do. He is, you know, in the past he has suffered nightmares, he is a fretful, fitful sleeper. He has heard voices, he sees colours so again it is all linked with his anxiety and everything and the paediatrician just thinks he needs very little sleep.”

One mother gave her children story CDs to listen to, some parents tried to reduce the time they lay down with their children by five or ten minutes at a time and one couple had given their son a television in his bedroom which helped him to settle.

Some children needed to have rigid routines at bedtime which could last up to two or three hours and often involved asking a series of questions about things they were afraid of, such as thunder or death.

Some parents discussed how their children’s sleeping patterns had improved over the years. Some of the children had slept very poorly for their first few years - that had been very difficult for their parents. One mother said she and her husband were like ‘a couple of zombies’ for a few years, but over time the children learnt to sleep on their own.

It was clear that eating and sleeping held considerable challenges for the parents and their children. Other areas that were important to parents are discussed in other summaries, such as ‘Difficulties with education; getting a statement’, Difficulties with education; disliking school’, ‘Communication; understandings’, ‘Communication; relationships' and ‘Going out’.

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Last reviewed July 2017.

Last updated November 2012.


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