Author Archives: Jane Margetson

Sleep seminar

father and sleeping baby
On 13th November Cerebra held a seminar at the Thistle Hotel in Birmingham on ‘Sleep in children with developmental difficulties’. The event was held in conjunction with the Cerebra Centre for Neurodevelopment Disorders at the University of Birmingham.

The purpose of the seminar was to disseminate the findings of recent sleep research including the use of both behavioural and medical interventions and to describe the practical implications for parents and professionals.

Key speakers included:

  • Dr Andy Badshaw (University of Birmingham)- An introduction to sleep
  • Prof Paul Gingras (Guys and St Thomas) – Sleep in children with neurodevelopmental disorders
  • Lisa Fishwick (Parent) – The impact of having a child with sleep disturbances
  • Moira Draper (Cerebra) – Cerebra sleep services
  • Dr Luci Wiggs, (Oxford Brookes University)- Non-pharmacological approaches to sleep problems in children with neurodevelopmental disorders
  • Sleep research at the Cerebra Centre for Neurodevelopmental Disorders.

We had a very good turnout, with 74 delegates attending on the day. The presentations were excellent and stimulated much dynamic discussion amongst the group. Delegates said the day provided ‘good variation of topics and good signposting to relevant services; definitely felt more empowered to deal with sleep issues’ and stressed how important it was to have a parents view of sleep problems and their approach to a solution.

Next time delegates would like a dedicated seminar addressing sensory processing, challenging behaviour and mental health in children with developmental disabilities and more parent stories, talking about what worked for them.

The Cerebra Centre for Neurodevelopmental Disorders

cerebra-centre-logoIn this article we outline the research being carried out at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham.

Over the last 6 years (2008-2013), Cerebra has provided the core funding for The Cerebra Centre for Neurodevelopmental Disorders, a research centre based at the School of Psychology at the University of Birmingham, headed by Professor Chris Oliver.

The aims of the centre for the first six years of funding (2008-2013) were:

  • to carry out longitudinal, cross syndrome data collection to describe and understand the genetic, physical, neurological, cognitive and behavioural characteristics of children and young adults with genetic disorders associated with neurodevelopmental disorders
  • to conduct exploratory and hypothesis-driven experimental research projects that seek to discover the causes of and effective interventions for behavioural, cognitive and emotional problems in children and young adults with genetic disorders, intellectual disability and autism spectrum disorder
  • to disseminate research findings of relevance to all children and young adults with neurological impairments, intellectual and developmental disabilities who show behavioural, cognitive and emotional problems.
  • To read more about the current and past research projects, please visit the centre’s project pages, or read their annual report on the Cerebra website.  In this video a researcher at the centre explains the impact their research has for children with neurodevelopmental disorders and their families.

    The next 6 years

    Cerebra are delighted to be in a position to provide core funding for the Cerebra Centre for Neurodevelopmental Disorders for a further 6 years (2014-2019). The research taking place will continue to focus on understanding and ameliorating the clinically and socially significant problems that are experienced by children with neurodevelopmental disorders and their families. The centre will focus on three areas of research:

  • refining the behavioural phenotypes of genetic disorders
  • understanding the causes of clinically and socially significant problems experienced by children with neurodevelopmental disorders and their families
  • developing an early intervention strategy to prevent the development of these problems.
  • Understanding and reducing sleep disorders in children with developmental delay

    Cerebra have awarded additional funding to the centre to conduct research that will describe and assess sleep disorders in three groups of children at the highest risk for severe and persistent sleep problems:

  • children with Angelman syndrome
  • children with Smith-Magenis syndrome
  • children with intellectual disability and autism spectrum disorder.
  • The contrasting nature of the sleep disorders will allow the project to:

  • identify critical points for intervention that are disorder-sensitive
  • compare and contrast the effects of different types of sleep disorders on parental wellbeing and physical health
  • develop and trial disorder-sensitive sleep assessment protocols
  • evaluate the effects of behavioural management in proof of principle studies
  • develop cloud and internet resources to facilitate assessment, sleep consultancy, intervention and dissemination.
  • The study of sleep disorders in these three groups affords the opportunity to describe the relationship between different types of sleep disorders in children and their relationship to disturbed sleep, stress, poor physical health and coping in parents. These research findings will be invaluable to inform the Cerebra Sleep Service.

    Further Inform Neurogenetic Disorders (FIND) website development

    Cerebra also co-fund a website project with the Economic and Social Research Council (ESRC), led by the Cerebra Centre for Neurodevelopmental Disorders, that aims to get these research findings about rare genetic syndromes to families and professionals quickly and effectively. The website is named ‘Further Inform Neurogenetic Disorders (FIND)’, and will be launched in September 2014. Keep an eye out for the launch!

    For more information on FIND and the services provided please click on this link to be directed through to the website:  http://www.findresources.co.uk/about-us

    Pain, Sleep and ASD

    father and sleeping babyThis article examines the relationship between pain and sleep problems in children with Autism.
    Research published in the February issue of Autism, suggests that a full assessment of pain and sleep problems in young people with Autism Spectrum Disorders may provide crucial information for medical and behavioural treatment planning.1
    Health related problems (e.g. gastro-intestinal problems and asthma) are often found to co-exist with Autistic Spectrum Disorders and may be more prevalent in young people with ASD than in typically developing children. Previous research has suggested that pain and sleep problems are highly co-occurring and may increase the likelihood of a young person with ASD experiencing functional impairments and impact upon their quality of life. Research has shown that sleep problems increase when pain is present in young people with physical and intellectual disabilities.

    The study is the first to examine the sleep-pain relationship in young people who are considered by their parents to have ASD, specifically looking at whether children with pain-related behaviours  are more likely to have sleep problems. Researchers anticipated that more pain-related behaviours would predict more sleep problems, as previous research has found for typically developing young people and those with developmental disabilities. Researchers also examined whether the way in which the young person expressed the pain could predict sleep problems.

    To investigate these relationships, researchers recruited 63 young people (aged 3-18 years) with Autistic Spectrum Disorders (ASD) to the study. They used the non-communicating children’s pain checklist revised (NCCPC-R), a widely used parent-report measure of pain in individuals with communication difficulties, to identify pain behaviours. Subscales used to measure pain included vocal, social (e.g. seeking comfort), facial, activity (e.g. agitation), body (e.g. protecting body part), physiological (e.g. sweating) and eating/ sleeping (sleep problems or disinterest in food). The Children’s Sleep Habits Questionnaire (CSHQ), a parent report measure, was used to measure behavioural and medical sleep problems, such as bedtime resistance, sleep onset delay, sleep duration, sleep anxiety, night waking, parasomnias (e.g. nightmares/night terrors) and sleep disordered breathing.

    Sleep problems predicted by pain related behaviours

    The analysis of the NCCPC-R and CSHQ data found extremely high levels of both pain and sleep problems in the young people with ASD who took part, with over 90% of respondents scoring at clinically significant levels on both measures. The researchers’ hypothesis proved largely correct: the study found thatmore pain-related behaviours experienced during the previous week indeed predicted more over­all sleep problems. However the study also suggested that not all sleep problems can be predicted by pain related behaviours consistently. The types of sleep problems most consistently predicted by pain related behaviours were problems with sleep duration, parasomnias and sleep disordered breathing.

    Pain communication type as a predictor of sleep problems

    Sleep problems could be predicted by particular ways of communicating pain. Problems with sleep duration were predicted by social communication of pain, for example comfort seeking. However, the researchers suggest that the social communication of pain may predict shorter sleep duration because of the nature of the social communication behaviour interfering with getting off to sleep.

    The presence of parasomnias (nightmares/night terrors) could be predicted by facial communication of pain (the most common observable form of pain behaviour). However the researchers suggest it is possible that the grimacing and gnashing that takes place during parasomnias may increase the likelihood of mothers reporting such behaviour. It is suggested that future research examining this relationship in more depth would be useful.

    Sleep disordered breathing was predicted by vocal communication of pain. However like parasomnias, the behavioural presentation of sleep disordered breathing (e.g. gasping), may have some overlap with pain behaviours communicated vocally. The researchers suggest that future studies should further examine how pain-related behaviours are communicated among young people with ASD and various respiratory complaints as compared to those without respiratory complaints.

    Clinical implications

    Despite the limitations to the study, such as the relatively small sample size, lack of a comparative group and the reliance on parents’ data collection and diagnosis of ASD, the authors suggest that the relationship between sleep problems and pain behaviours has important medical and clinical implications for young people with ASD. Health problems that cause pain or discomfort in young people with ASD may hinder any response to behavioural interventions and pharmacological treatments as well as their day to day functioning. The research suggests that paediatricians and clinicians should take pain-related behaviours into account when assessing and planning treatment for young people with ASD.

    The findings are also useful for parents as they may benefit from taking note of their child’s sleep health if the child also has high levels of pain-related behaviour, because sleep disordered breathing, parasomnias and shorter sleep duration tend to be more prevalent in young people with ASD and can have a negative effect on daytime functioning.

    The recognition of the relationship between pain and sleep in young people with ASD may help in the design of interventions based on indicators of pain, for example identifying a young person’s socially communicated pain could assist parents and clinicians design interventions (e.g. to improve the young person’s self-soothing abilities).

    Future directions

    Future studies would benefit from collecting data over multiple time periods. This could help to understand any causal relationships between pain and sleep problems and help to identify factors which may affect them, such as parenting style or parental stress. Utilising comparison groups would also indicate if the relationships between pain and sleep identified are actually unique to young people with ASD. Additionally, more investigation of how pain and sleep problems relate to each other and the effect on daytime functioning of young people with ASD would be able to further inform assessment procedures, and have an impact on the young people’s qual­ity of life.

    1. Tudor, M.E., Walsh, C.E., Mulder, E.C., Lerner, M.D. (2014) Pain as a predictor of sleep problems in youth with autism spectrum disorders. Autism [Online] Available fromhttp://aut.sagepub.com/content/early/2014/01/30/1362361313518994

    If you are interested in sleep and Autism, you may find this webinar by Dr Ruth O’Hara, shown on Sfari, an informative watch.

    http://sfari.org/sfari-community/community-blog/webinar-series/2013/webinar-ruth-ohara-on-sleep-disorders-in-autism