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 from

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

PenCRU Childhood Disability Research Summary

pencru2PenCRU conducts a varied programme of applied research that aims to improve the health and well being of disabled children and their families.

Over the last 6 years, between 2008-2013, Cerebra have provided the core funding for Peninsula Cerebra Research Unit (PenCRU), a research centre based at the University of Exeter Medical School. PenCRU conducts a varied programme of applied research that aims to improve the health and well being of disabled children and their families. The main aims of the unit are to:

  • evaluate the effectiveness of interventions in children with brain injury and neurological disorders
  • better understand the effect of interventions on the life experience of these children, their families and parents/carers
  • provide better, accessible information to families and people with brain injury and neurological disorders about the effectiveness of interventions.

Family involvement

PenCRU runs a family faculty, which consists of families of disabled children who are interested in the research taking place at the unit. The purpose of the unit is to involve families of children with brain injury and neurological disorders in setting the research agenda and enable active engagement of parents in all aspects of the research process. Parents in the Family Faculty have been involved in a range of activities; these include developing their own ideas for research topics, helping PenCRU carry out research in progress, and helping to tell people about the research taking place through plain language summaries of research and presenting at conferences.

PenCRU is looking to engage children and young people (C&YP) in research in the future and are investigating the possibility of establishing a C&YP faculty. In 2014 the unit will pilot some engagement with a small number of schools and hope to use the learning outcomes to apply to the development of a C&YP Faculty in the future and fully involve C&YP in research activities.

Research projects

During the funding period 2008-2013, PenCRU has used the core Cerebra grant to secure further funding to conduct a varied programme of research.

James Lind Alliance – Childhood Disability Research Priority Setting Partnership
The aim of the Childhood Disability Research Priority Setting Partnership (PSP) is to identify and prioritise the most important research questions in neurodisability from the perspective of families and clinicians. The Steering Group reviewed over 800 research suggestions, once duplicated issues and out of scope submissions were accounted for; around 60 research questions are going forward for prioritisation.

Children’s Outcomes Measurement Study (CHUMS)
A NIHR funded study examining which health outcomes should be measured by the NHS to evaluate services for disabled children.

The benefits and costs of peer support
This project is evaluating the benefits and costs of providing one-to-one peer support to parents of children with disabilities.

Eating and Drinking Ability Classification System (EDACS)
A NIHR funded project to develop a valid and reliable eating and drinking ability classification system for children with cerebral palsy.

Hospital communications
This study aims to improve communication between paediatric ward staff and disabled children when they have to spend time in hospital.

Measure aspects of autistic spectrum disorder in young children (MeASURe)
MeASURe is investigating tools used to measure aspects of autistic spectrum disorder, and how well these reflect issues of importance for patients and carers.

Evaluating sleep systems for children with cerebral palsy
This review will appraise evidence of whether commercially available night-time postural management systems reduce hip deformity in children with cerebral palsy.

Sleep systems for children with Cerebral Palsy
This pilot study will test a research design for assessing how night-time postural management equipment affects sleep, comfort, pain and deformity in children with cerebral palsy.

Evaluating an intervention for mainstream schools to promote children’s positive attitudes towards disability
This study aims to use a school based survey and a literature review to facilitate the development of an intervention/educational materials for mainstream schools.

Systematic review of school based non-drug treatments for ADHD
This study aims to review non-drug interventions delivered in schools for children with ADHD.

Systematic review: involving disabled children and young people as partners in research
This project aims to carry out a literature review to find out what is currently known about involving children and young people as partners in research.

Children and young people project
This work is looking at how disabled children and young people can get involved in research and PenCRU activities.

What’s the evidence?
‘What’s the Evidence?’ reports summarise what is known about the effectiveness of a number of treatments and therapies, to give families access to the best current evidence to help them make decisions about their children.

There is a wealth of useful information on the PenCRU website about what research is, how families can get involved in research and also Plain English summaries of some of the research conducted at the unit.

The next six years

Cerebra are delighted to be in a position to provide the core funding for Peninsula Cerebra Research Unit (PenCRU) for a further 6 years between 2014-2019, to continue the fantastic work they do building capacity in the area of childhood disability,  involving families in research and addressing research questions about interventions that really matter to families.

If you would like to read more about the research activities at PenCRU, their full 2013 Annual Report is available here.

Legal Research Team Makes a Difference

Oliver on the busOur new Legal Entitlements Research Project at Cardiff Law School is already making a difference to families.

Oliver is a 10 year old boy with Down’s syndrome and severe learning difficulties. Oliver’s parents were struggling to get transport for their son to his new school as they live in a rural area, 1.8 miles from the school. Their local authority applies a policy that all children who live less than 3 miles away from their school will not be eligible for funded travel by the local authority. But the route Oliver needed to take was unsafe. It involved walking through lanes which in some sections were single track with no passing places or lay-bys, a lack of street lighting and formal pavements, and the surface was in poor condition with many potholes.

Oliver and his parents had to cope with high volume traffic at peak times which would coincide with times when lighting was poor. Oliver’s disability also makes him prone to running off, becoming easily distracted, especially by potholes, and becoming distressed by loud noises. Oliver also has a brother who attends a different school in the opposite direction and taking both children at the same time would cause considerable distress to Oliver due to his past association with the school. Despite many attempts at trying to resolve the issue themselves with supporting letters from Oliver’s GP, social worker, paediatrician, his old school and his learning disability nurse, their applications and appeals continued to be turned down. This is when they decided to contact Cerebra’s Legal Entitlements Research Project.

The opinion of the team working on the Project was that the local authority had acted unreasonably in requiring Oliver to walk the prescribed route to and from school and had failed to consider the impact of his disability. The local authority had not acted in compliance with its obligations towards disabled children under the Equality Act 2010. The local authority had also applied a blanket policy and not considered the impact of Oliver’s disability on his ability to walk to school.

“We are delighted with the outcome of Oliver’s case and know that the provision of transport to and from school will make a huge difference to him and his family. The students worked extremely hard and are thrilled that their work has had such a positive impact. They were very touched that Oliver’s mum sent a photograph of Oliver on the school bus and this made their work feel even more personal” – Hannah Walsh, Cardiff Law School.

As a result of the letter written for the family by Professor Luke Clements and his team, the LEA has agreed to provide transport for Oliver to and from school. Oliver’s mum has shared a photograph with us of a happy little boy travelling to school safely.

With huge thanks to Cerebra and Cardiff Law School, Oliver has been going on the bus to and from school for just over a month now. Oliver loves going on the bus and this means he arrives at school much calmer and less stressed than he would if he walked. We were given excellent legal advice and access to a specialist in school transportation; this allowed us to present a much stronger case that resulted in success following our own previously unsuccessful application and appeals” – Oliver’s parents.

Public bodies in the UK have certain duties to provide health and social care support for disabled children. Sometimes, however, families experience difficulties accessing these rights. The series of ‘rights’ advice guides commissioned by Cerebra, are designed to help families who are experiencing problems with statutory agencies, such as social services and the NHS.

If you need additional support, the Cerebra Legal Entitlements Research Project may be able to help. The programme, which is free for families, enables Cardiff University law students (supervised by qualified staff, firms of solicitors and other disability organisations) to assist families who are experiencing a problem with their local health or social care services.

Find out more about Cerebra’s Legal Entitlements Research Project.

Learning and the Brain: brief thoughts on a huge subject.

learningWe give some thought to how knowledge of how the brain develops could be used to influence teaching methods and encourage learning.

It is easy to realise that as children learn, the process of learning and the ways their brains work will be affecting each other. Yet much work still needs to be done to translate what is known from evidence about the brain into educational practice. There is increased interest today in an analytical approach to this question. For example The Independent recently reported that a school in New Zealand tried abandoning the rules and safety measures they had in place in the playground. They found that pupils became more interested in their play, were better behaved and concentrated better in the classroom. An involved health researcher explained these effects in terms of the brain, saying that by actively taking risks in that environment, the children were developing the brain’s frontal lobe and learning to calculate consequences.

Particularly in young childhood, connections between neurons are developed (sometimes called brain “wiring”) and others are not developed, depending on interaction between genetics, environmental factors and experience. As time goes on, a process of “synaptic pruning” tends to develop stronger existing connections and to drop weaker ones. Neuroscience for Kids (University of Washington) briefly describes the general neuronal basis of learning. There are also changes that take place at the neuronal level when the brain tries to recover from an injury, and there are those who have physical and/or chromosomal differences that influence the way their brain develops.

What about learning academic subjects? Could neurological and neuropsychological knowledge aid teaching, including special techniques for those who have brain injuries or different “wiring” to learn as well, perhaps in different ways? Is it possible to gear teaching to a child’s maturity level, taking account of the ways in which functions within the same child reach stages of maturity at different times?

There is a description of how brains mature, and how this can be taken account of in the classroom as well as at home, (Margaret Semrud-Clikeman, Michigan State University, and American Psychological Association). The history of current theories in relation to education is comparatively recent and still in formation. They have been informed by brain research from the late 20th century onwards and data from brain scanning techniques (MRI etc.) that have become more fine-tuned. Theories about how we learn in general go back much further.

learning2Either where a child is having some difficulty with learning, or where a blossoming strength or talent appears that the child might be able to utilise further, parents often look for specific educational systems that might address them. Obvious examples are the techniques and computer programs for helping students with dyslexia to read etc., some of which are used by schools, some at home and some by specialist organisations. A specific example of a method based on brain research and theory is Paula Tallal et al’s “Fast ForWord™”.

Many curricula, methods and books are disseminated and marketed to address quite a wide variety of learning-related problems and questions, some of which overlap with the field of therapy, and many of which label themselves as brain-based, at least in part. (“Brain-based learning” is more of a descriptive term, rather than the name of one particular method, although it tends to be associated with a particular system used in the USA.)

Providers will often describe how they believe their methods interact with the brain. Interested parties will ask what are these beliefs based on; is there sound evidence that the brain works in the ways suggested by the proponents of the method, and that the method works in the way they believe it does? How constructive (or otherwise) might one of these methods be for a particular child, and how much time and money could be worth investing in it?

These methods are likely to have been put forward by people who believe in their efficacy, based on a mixture of theoretical research and experience with teaching children. In some cases there is a behavioural component, designed to make children respond in particular ways – would these be helpful to any child or could an autistic child, for example, perceive and respond to this component in unexpected ways?

But how else can a family or teacher looking for something to help a specific child, and beginning to ask questions like this, set about evaluating one of these methods? The principles suggested in relation to therapies by the Peninsula Cerebra Research Unit based at the University of Exeter, (under “Searching for evidence on the Internet”) would help as an information-gathering and decision-making tool.

Where there is evidence available, how does that evidence base itself on children like, or unlike, the child in question? There are also practical considerations such as, how would the method fit in with the rest of the child’s education, lifestyle and analyses of their needs such as their educational psychology report? What do the teacher(s) and/or the SENCO think of it? If there is a specialist organisation for the child’s condition or learning difficulty, do they or their member families have any experience of it?

Related subjects

A related set of products and methods comes from the “brain training” industry, which is largely concerned with the field of personal development, aiming to target aspects of cognitive performance, language learning etc. The terms “evidence-based learning” and “evidence-based training” can also be found, the evidence often being related to data about the outcomes of the learning.

An important linked area, which is another huge subject in itself, is that of memory. Many children with additional needs have seemingly puzzling memory traits, such as weak memory retrieval, remembering something at one time and not at another time, or being slow to process learning. A topic for another time, perhaps!

William’s story

WilliamWilliam’s mum tells us about the experiences of her family and how Cerebra have helped.

“William was born very premature at just 27 weeks and weighing only 1 lb 3 oz at St George’s Hospital, London. William had to be delivered by emergency C-section after I developed pre-eclampsia and HELLP syndrome. He was rushed to the neonatal unit, where he stayed for four months until he was stable enough to be transferred to his local hospital in Yorkshire for a further four months. He had a very stormy ride on the neo-natal unit, needing lengthy ventilation and suffering from liver problems, feeding issues, many infections and epilepsy.

william-babyAfter 8 months, with the help of amazing consultants, doctors and nurses, he finally arrived home solely tube fed and on constant oxygen. Only 26 hours later he was rushed back to his local hospital and transferred to Sheffield paediatric intensive care unit (PICU) in respiratory distress. Put on an oscillator ventilator with nitric oxide and very unstable the consultants arranged for him to be transported to Leicester and put on life support. Fortunately he improved on the journey down, escaping the machine. William spent a further month in Sheffield receiving the best care, being weaned off the ventilator and gradually getting well enough to come home. William had a further three months in and out of hospital unwell with viruses and feeding issues.

In October 2012 he was rushed to Sheffield PICU after going into respiratory failure due to aspiration pneumonia. The staff on the PICU did all they could for William for almost two days, but couldn’t stabilise him. Rushed to Newcastle Freeman hospital he was put on an ECMO (extracorporeal membrane oxygenation) machine and we were told to prepare for the worst.

However, as always William had other ideas. He managed to come off the machine after six days, and be transferred to Sheffield again.  Once again, the staff were fantastic, and William received the best possible care and was sent home.william-buggy

Since October 2012 William has had many admissions to Sheffield hospital due to illnesses, surgery and his epilepsy.  A bleed on the brain, thought to have happened before he was born, resulted in a static brain injury that will affect his development as he grows.  He suffers with epilepsy, is fed via a gastric tube and is severely globally delayed and visually impaired. Despite his problems he has exceeded all our expectations and is now crawling and pulling up to furniture.

Because of how vulnerable his problems make him he has had to stay indoors for much of the winter, so many days are spent in his playroom with sensory equipment. We discovered Cerebra on a Facebook support group for parents with children with additional needs. He loves bike rides and being outside, so we applied for a grant for a specialist bike just for him. As well as many walks and bike rides he loves feeding the ducks.

William is a true fighter. A gorgeous, content and loved little boy.”

William is just one of many children who have been helped by Cerebra. We can only keep providing help, through direct support as well as through funding vital research, with your support. Check out our fundraising pages to find out how you can make a positive difference today.