Sleeping problems cause health, relationship and employment difficulties for families of children with autism, new study finds
16 March 2017 - Carrie Braithwaite
Fathers of children with autism report that their child’s sleeping problems cause difficulties with health, relationships and employment within their families, a new study from Leeds Beckett University shows.
The research, led by Carol Potter, Senior Lecturer in the Carnegie School of Education at Leeds Beckett, and funded by The Leverhulme Trust, has been published in the latest edition of Advances in Autism journal. It explored the role of fathers in managing the sleeping problems of children on the autism spectrum, as part of a wider study, which involved an online survey of 306 UK fathers, of whom 25 were later interviewed.
The survey found that half of all men were significantly involved in managing their children’s sleeping problems, often alongside mothers and one in four reported that their children’s sleeping difficulties caused them ‘a great deal of stress’.
Of the 25 men interviewed, two thirds reported that their children experienced severe problems in one or more of the following areas: going to bed, falling sleep and staying asleep during the night, with a number children waking on several occasions, sometimes for hours at a time.
Carol Potter said: “We already know that between 40 and 80 per cent of children with autism experience problems with sleep, around twice the rate of typically developing children. With the amount and quality of sleep being strongly associated with general wellbeing, intellectual development, as well as levels of stress, these difficulties can have serious repercussions for both children and families.
“The fathers I spoke to explained that managing children’s sleeping problems was most often shared between themselves and their partners. However, in ten families, men had taken the lead in managing children’s night-time problems for various reasons, sometimes relating to their partner’s work commitments or because fathers felt that mothers needed more sleep due to having undertaken the majority of childcare during the day.”
In the interview study, negative impacts on parents’ health were reported as the most concerning effect of sleeping difficulties. One father reflected: “A few years ago we were getting no sleep. Literally two or three hours’ broken sleep a night.” Another talked of the impact on himself and his wife: “We were physically and mentally drained – that sleep deprivation thing.”
For several men interviewed, sleeping issues had caused major difficulties in their working lives due to extreme tiredness during the day when they had been awake for much of the night. One father talked about the long-term effect of interrupted sleep on his employment: “From when he was four to seven, some days I was going in to work and I was absolutely drained, absolutely drained - and having a full day’s work ahead of me.”
Over a third of men discussed how sleeping difficulties had affected their relationship with their partner. Problems getting children to bed meant that parents spent very little time together in the evenings and several fathers were often awake supervising their children during the night. One man said: “I would sleep on a chair in his room. Simply because that was the only option.” For one couple, the strain of their child’s sleeping difficulties almost led to a breakup: “It got to the stage where we were on the point of divorce. We’d literally reached the point where we had no life.”
A small number of fathers interviewed talked about how night-time problems had affected the lives of their other children. For example, parents often had less time to spend with brothers and sisters during the evenings and sometimes the sleep of brothers and sisters was disturbed, which could affect their school work.
Almost all children with severe sleeping problems discussed in the interviews were prescribed medication; although a number of fathers reported only limited success with this. Families also used a number of sleep hygiene approaches to try to improve children’s sleeping patterns, especially very consistent bed-time routines. However, although such strategies helped, often significant difficulties remained.
Carol said: “Given the severity and frequency of sleeping problems in children with autism, this issue should be viewed as a significant health-related concern. Much more support is needed for families in this vital area. The greater availability of nurse-led community-based sleep clinics where staff are highly trained in sleep management techniques could be one extremely useful way forward, to support families under significant strain, and to help children who do not get sufficient rest.”
Wider findings from Carol's research will be published in a book next year.