Tag Archives: Cerebra Centre for Neurodevelopmental Disorders

Sleep – tips and techniques

We are launching a new resource to help families who have a child with a brain condition to get a good night’s sleep. Sleep – tips and techniques for families who have a child with a brain condition explains techniques to help with the ten most common sleep problems including refusing to go to bed; not wanting to sleep alone, waking up during the night, waking up early.

We all need good quality sleep in order to learn new information, pay attention to the world around us, and store memories effectively. Sleep influences our mood, how hungry or full we feel, as well as fundamental biological processes such as cell development. Given the wide-reaching impact of sleep, it is not surprising that poor sleep has a significant negative impact on people.

Unfortunately, short and disrupted sleep is common in children with neurodevelopmental disorders. Children with autism, intellectual disabilities and a variety of rare genetic syndromes are at greatest risk of experiencing the negative consequences of poor sleep. What’s more, these children may already find learning new information, maintaining attention and regulating mood and behaviour very difficult; compromised sleep in these groups is therefore a huge concern.

Our Sleep Service helps families to get a better night’s sleep through one-to-one support, sleep workshops and sleep information resources.

The new booklet, Sleep – tips and techniques introduces and explains several different techniques that may help a child’s sleep and gives lots of illustrated hints and tips for putting them into practice. It includes 10 topics:

  • Bedtime routine
  • Calming time before sleep
  • A good sleep environment
  • Positive sleep associations
  • Using a comforting object
  • Gradual withdrawal from the bedroom
  • Moving bedtime backwards
  • Moving bedtime forwards
  • Creating a rewards system
  • Reducing daytime naps

Download booklet (PDF)

The information in the booklet is based on research at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham. Through the Sleep Project they are leading cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialling new interventions to reduce sleep problems more effectively.

The Sleep Tips guide can be downloaded free of charge. You can also access one-to-one support, find out about sleep workshops as well as download our comprehensive Sleep Guide.

We’ve planned a week of activity on social media around the launch of the new Sleep Tips booklet. Cerebra Sleep Week runs from 17th – 23rd September and will include lots of advice and support for families who may be struggling with lack of sleep. #Cerebrasleepweek.

Understanding and reducing sleep disorders in children with development delay

The Sleep Project at the Cerebra Centre for Neurological Disorders at Birmingham University is studying sleep in children with neurological conditions. In this article Professor Chris Oliver and Dr Caroline Richards explain the need for the project and the progress that’s being made.

Why is the Sleep Project important for families?

Sleep is a universal phenomenon, influencing almost every human activity. We need good quality sleep in order to learn new information, pay attention to the world around us, and store memories effectively. Sleep influences our mood, how hungry or full we feel, as well as fundamental biological processes such as cell development. Given the wide-reaching impact of sleep, it is not surprising that poor sleep has a significant negative impact on people.

Unfortunately, short and disrupted sleep is common in children with neurodevelopmental disorders. Children with autism, intellectual disabilities and a variety of rare genetic syndromes are at greatest risk of experiencing the negative consequences of poor sleep. What’s more, these children may already find learning new information, maintaining attention and regulating mood and behaviour very difficult; compromised sleep in these groups is therefore a huge concern.

Despite this great need, research on sleep in children with neurodevelopmental disorders is sadly lacking. We know the least about sleep in the children for whom sleep is arguably most important. The Sleep Project, conducted by the Cerebra Centre for Neurodevelopmental Disorders will change this.

We lead cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialing new interventions to reduce sleep problems more effectively.

What progress has the Sleep Project made since Cerebra began to support it?

Projects:

We have completed five core components to date:

  1. We have conducted a large scale interview study, speaking with fifty parents and carers of children with Angelman syndrome (a rare genetic syndrome associated with sleep problems) to identify their concerns and priorities in sleep.
  2. We completed a cross-syndrome sleep survey with over 190 children with Angelman syndrome, Smith-Magenis syndrome, tuberous sclerosis complex and autism spectrum disorder. This provided robust evidence of syndrome specific sleep problems and unique pathways to sleep disturbance. We found that knowing the cause of a child’s neurodevelopmental disorder is essential to ensure accurate understanding of their sleep problem.
  3. We have completed the largest direct study of sleep using Actigraphy in children with Angelman syndrome, Smith-Magenis syndrome and Autism Spectrum Disorder. In this study over 100 children wore sleep trackers (Actigraphs) for a week, to provide direct evidence of their sleep-wake cycles. This resulted in the, largest, most robust international data on sleep patterns and the daytime impact of poor sleep in these rare groups.
  4. We have collected novel night-camera video data on children in the Actigraphy study and are analysing these data to better understand what children do when they wake up. We will use our understanding of waking and settling behaviours to develop more tailored interventions for sleep.
  5. Finally, we have conducted an in-depth study of sleep and parental stress, through collecting Actigraphy, self-report and bio-marker (cortisol) data from parents of children with neurodevelopmental disorder. This will enable us to quantify the impact of children’s poor sleep upon parents and carers.

Families who have taken part in these studies have received detailed individualised feedback reports, and the results of these studies have been published or are in review at leading academic journals.

Public Knowledge:

A key aim of the sleep project is to ensure that as we improve scientific understanding of sleep in children with neurodevelopmental disorders, we simultaneously share that information with families, clinicians and educators.

Research traditionally takes 10 to 17 years to influence real world practice – that is an unacceptably long time. We are committed to reducing this lag. In addition to publishing our research in high-impact academic journals and speaking at scientific conferences, we provide regular talks on sleep to inform and update parents and professionals. These have included talks at schools, parent support conferences, national professional networking events and large public conferences such as The Autism Show.

In addition to this, we co-produced a Sleep Guide for parents, in partnership with Cerebra which is freely available via Cerebra’s website. The guide explains how problems with sleep may develop, the specific nature of sleep problems in children with rare genetic syndromes, how to assess sleep problems, and how to intervene to improve sleep.

Alongside the guide, we also co-produced brief Sleep Cards to be used by Cerebra’s Sleep Service. These provide bite-size chunks of information on sleep interventions that the Cerebra Sleep Practitioners can give to families they are working with, to help parents and carers to implement evidence-based sleep interventions.

We have also launched new sleep content on our dissemination website: Further Inform Neurogenetic Disorders (FIND). The site has had over 14,000 page views since it was launched and continues to attract a high rate of hits. The sleep section on FIND contains accessible information on topics such as: current sleep knowledge, why it is important to investigate sleep in people with genetic syndromes, what interventions are available for sleep and the sleep research that we have been conducting.

Investing in People

The Sleep Project will increase expertise in Sleep Research in the UK. Through the first four years of the project, we have trained two PhD, seven Clinical Doctoral, three Masters and 10 Undergraduate students. The majority of these students are now working in either research or clinical psychology and therefore this investment in training has increased UK expertise in sleep problems in neurodevelopmental disorders.

What will be the longer term impact of the Sleep Project for families?

The long term goal of the Sleep Project is to improve sleep outcomes for children with neurodevelopmental disorders, ensuring that they have the same opportunities to thrive in life as their typically developing peers. With sustained funding, the Sleep Project will ensure that children with neurodevelopmental disorders have access to tailored assessments and timely interventions to ensure the best quantity and quality of sleep for them and their families.

Prepared by Dr Caroline Richards and Professor Chris Oliver at The Cerebra Centre for Neurodevelopmental Disorders.

Effective interventions for long term change

At the Cerebra Centre for Neurodevelopmental Conditions, University of Birmingham, the aim is to identify the causes of the most pressing problems for children with neurodevelopmental disorders in order to develop effective interventions that are delivered at the right time to enable long term change.

Our work

What’s the problem? It sounds like a straightforward question but it’s not. Many children with neurodevelopmental disorders experience a range of problems that impact negatively on their lives and the lives of their families. These problems change as the children grow up and include autistic like conditions, self-injury and aggression, sleep disorders, and emotional and mental health problems.

Critically, the chance of having one of these problems is linked to the cause of neurodevelopmental disorders. Children with autism who cannot speak are more likely to self injure, children with Smith-Magenis syndrome are much more likely to have problems sleeping and children with tuberous sclerosis complex are more likely to experience hyperactivity and be impulsive. Once we know the cause of a neurodevelopmental disorder we now know the chances of a specific problem occurring and this makes it possible to plan for the future and develop early intervention strategies. At the Cerebra Centre we have identified specific problems in more than 20 neurodevelopmental disorders.

What causes these problems? By studying the problems we have identified in specific neurodevelopmental disorders, we have been able to identify specific causes. For example, we have shown that pain resulting from untreated gastro-oesophageal reflux (severe heartburn) can be a cause of self-injury, breathing problems can make sleep problems worse in Smith-Magenis and Angelman syndromes and problems with flexible thinking can lead to severe anxiety in social situations. At the Cerebra Centre we can make specific recommendations for interventions and also promote early intervention targeting these causes.

How can clinicians, teachers and parents identify the cause of a problem? Whenever a problem develops, careful assessment is critical to choosing the right intervention. Knowing that the chance of a problem occurring is higher in some neurodevelopmental disorders than others means that priorities for assessing causes can be tailored for individual children. However, assessment of causes is difficult when children have very severe disabilities and limited communication.

New assessments and road maps for the decision making process during assessment are needed to make sure the cause of any problem is identified accurately and efficiently. This means the right treatment is more likely to be delivered quickly. At the Cerebra Centre we have developed new assessments for children who are severely disabled and nonverbal to identify clinically significant low mood, pain, unusual social behaviour, impulsivity and overactivity and repetitive behaviours. We have also made significant progress on protocols for the assessment of self-injury and sleep disorders.

Our information

It is estimated that it takes between 10 and 17 years for a research finding to be implemented in practice. That is too long. We do publish the results of our research in scientific journals so that they are subject to peer review and made available to other researchers and clinicians. However, we also provide information based on our latest research at parent and practitioner meetings, the FIND website, presentations at professional and scientific conferences and websites such as Researchgate. At the Cerebra Centre we deliver about one presentation a week at meetings, our research papers are read 150 times a week on Researchgate and elsewhere, 200 parents very year receive an individualised report on their child and around 14,000 people have visited our website.

Our team

At the heart of the Cerebra Centre are the people who do the work. At any one time we will have between 30 and 40 people working in the Centre. Some are Postdoctoral Research Fellows who completed their PhD in the Centre and have gone on to win their own grants to fund further research and support further PhD candidates. This generational progression has been critical to the success of the Centre. Other people who work in the Centre are Undergraduate, Masters and Clinical Doctoral students on placement. The core team supervise the work of these students who make a significant contribution whilst being trained in research methods. At the Cerebra Centre we have trained more than 50 Doctoral students and 30 Masters students. Last year, Postdoctoral Research Fellows associated with the Centre were awarded close to £500,000 in grant funding in addition to funds provided by Cerebra.

Our future

The Cerebra Centre is now well established with an international reputation, the largest database of rare genetic disorders in the world, a team with clinical and research training, support from parent groups, effective dissemination, demonstrable impact, a strategy for future development and a clear purpose. The task now is to convert our past and future findings into effective assessment and intervention delivered at the right time in the right way. At the Cerebra Centre we will continue to develop innovative, accurate and efficient assessments to identify the causes of the problems experienced by children with neurodevelopmental disorders and develop new interventions that can be delivered at the right time to enable long term change.

You can find out more and watch a short video about our work at Birmingham here.

Understanding and Reducing Sleep Disorders in Children with Developmental Delay

Dr Caroline Richards and Professor Chris Oliver from the Cerebra Centre for Neurodevelopmental Disorders talk about the Sleep Project which aims to understand and reduce sleep disorders in children with developmental delay.

Why is the Sleep Project important for families?

Sleep is a universal phenomenon, influencing almost every human activity. We need good quality sleep in order to learn new information, pay attention to the world around us, and store memories effectively. Sleep influences our mood, how hungry or full we feel, as well as fundamental biological processes such as cell development. Given the wide-reaching impact of sleep, it is not surprising that poor sleep has a significant negative impact on people.

Unfortunately, short and disrupted sleep is common in children with neurodevelopmental disorders. Children with autism, intellectual disabilities and a variety of rare genetic syndromes are at greatest risk of experiencing the negative consequences of poor sleep. What’s more, these children may already find learning new information, maintaining attention and regulating mood and behaviour very difficult; compromised sleep in these groups is therefore a huge concern.

Despite this great need, research on sleep in children with neurodevelopmental disorders is sadly lacking. We know the least about sleep in the children for whom sleep is arguably most important. The Sleep Project, conducted by the Cerebra Centre for Neurodevelopmental Disorders will change this. We lead cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialling new interventions to reduce sleep problems more effectively.

What progress has the Sleep Project made since Cerebra began to support it?

Projects: We have completed five core components to date.

  1. We have conducted a large scale interview study, speaking with fifty parents and carers of children with Angelman syndrome (a rare genetic syndrome associated with sleep problems) to identify their concerns and priorities in sleep.
  2. We completed a cross-syndrome sleep survey with over 190 children with Angelman syndrome, Smith-Magenis syndrome, tuberous sclerosis complex and autism spectrum disorder. This provided robust evidence of syndrome specific sleep problems and unique pathways to sleep disturbance. We found that knowing the cause of a child’s neurodevelopmental disorder is essential to ensure accurate understanding of their sleep problem.
  3. We have completed the largest direct study of sleep using Actigraphy in children with Angelman syndrome, Smith-Magenis syndrome and Autism Spectrum Disorder. In this study over 100 children wore sleep trackers (Actigraphs) for a week, to provide direct evidence of their sleep-wake cycles. This resulted in the, largest, most robust international data on sleep patterns and the daytime impact of poor sleep in these rare groups.
  4. We have collected novel night-camera video data on children in the Actigraphy study and are analysing these data to better understand what children do when they wake up. We will use our understanding of waking and settling behaviours to develop more tailored interventions for sleep.
  5. Finally, we have conducted an in-depth study of sleep and parental stress, through collecting Actigraphy, self-report and bio-marker (cortisol) data from parents of children with neurodevelopmental disorder. This will enable us to quantify the impact of children’s poor sleep upon parents and carers.

Families who have taken part in these studies have received detailed individualised feedback reports, and the results of these studies have been published or are in review at leading academic journals.

Public Knowledge: A key aim of the sleep project is to ensure that as we improve scientific understanding of sleep in children with neurodevelopmental disorders, we simultaneously share that information with families, clinicians and educators. Research traditionally takes 10 to 17 years to influence real world practice – that is an unacceptably long time. We are committed to reducing this lag. In addition to publishing our research in high-impact academic journals and speaking at scientific conferences, we provide regular talks on sleep to inform and update parents and professionals. These have included talks at schools, parent support conferences, national professional networking events and large public conferences such as The Autism Show.

In addition to this, we co-produced a Sleep Guide for parents, in partnership with Cerebra which is freely available via Cerebra’s website.

The guide explains how problems with sleep may develop, the specific nature of sleep problems in children with rare genetic syndromes, how to assess sleep problems, and how to intervene to improve sleep. Alongside the guide, we also co-produced brief Sleep Cards to be used by Cerebra’s Sleep Service. These provide bite-size chunks of information on sleep interventions that the Cerebra Sleep Practitioners can give to families they are working with, to help parents and carers to implement evidence-based sleep interventions.

We have also launched new sleep content on our dissemination website: Further Inform Neurogenetic Disorders (FIND). The site has had over 14,000 page views since it was launched and continues to attract a high rate of hits. The sleep section on FIND contains accessible information on topics such as: current sleep knowledge, why it is important to investigate sleep in people with genetic syndromes, what interventions are available for sleep and the sleep research that we have been conducting.

Investing in People: The Sleep Project will increase expertise in Sleep Research in the UK. Through the first four years of the project, we have trained two PhD, seven Clinical Doctoral, three Masters and 10 Undergraduate students. The majority of these students are now working in either research or clinical psychology and therefore this investment in training has increased UK expertise in sleep problems in neurodevelopmental disorders.

What will be the longer term impact of the Sleep Project for families?

The long term goal of the Sleep Project is to improve sleep outcomes for children with neurodevelopmental disorders, ensuring that they have the same opportunities to thrive in life as their typically developing peers. With sustained funding, the Sleep Project will ensure that children with neurodevelopmental disorders have access to tailored assessments and timely interventions to ensure the best quantity and quality of sleep for them and their families.

You can find out more about the Sleep Project here. You can also find out more about the work that the Cerebra Centre for Neurodevelopmental Disorders does here.

Birmingham Experts Launch Pioneering Autism Research

Leading researchers from Birmingham are today (25th October 2017) launching a major, new UK study into autism and mental health problems – and are calling for autistic people and their families to get involved.

The research is a collaboration between leading investigators at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham, Aston University, and leading UK autism research charity, Autistica.

An estimated 56,000 people in the West Midlands are autistic (1,2*) – and nearly eight in ten (79%) will experience a mental health problem (3).

The research will be the first in the UK to develop an assessment tool to distinguish emotional distress caused by anxiety and depression from distress caused by physical health problems, among minimally verbal autistic people with learning difficulties. Autistic people with learning difficulties are more than 40 times more likely to die from a neurological disorder than the general population – and twice as likely to commit suicide (4).

Commenting on the new research, which will be announced at an autism science talk in central Birmingham later today, Dr Jane Waite, Lecturer in Psychology, School of Life and Health Sciences at Aston University, and one of the study’s lead investigators, said: “People living with autism and their families have highlighted that managing mental health problems is their number one priority.  But, until now, the mental health needs of autistic people, particularly those with learning difficulties, have been seriously neglected due to a lack of research and support.”

Chris Oliver, Professor of Neurodevelopmental Disorders and Director of the Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham, said: “People with learning difficulties may be unable to describe how they are feeling and others may think that changes in behaviour and emotions are caused by things other than anxiety and depression. It is therefore essential that we develop better tools to help us detect when autistic people are experiencing distress and mental health problems and ensure services include everyone and they receive timely and effective help.”

Autistica is urging the local autistic community to get directly involved in this and other planned UK research projects by signing up to its autism research network, Discover. Visit autistica.org.uk/take-part . Discover will link the local autistic community with the Birmingham investigators, as well as other top UK research centres.

Jon Spiers, chief executive of Autistica, said: “We are delighted to be working with the Cerebra Centre on this pioneering new research.  By helping more people sign up to take part in autism research projects, we can make sure research addresses the challenges that families and autistic people face, and provide them with the information, services and care that they need.”

Autistica, together with its research partners, aims to recruit 5,000 autistic people, their families and carers to Discover by the end of 2017.

Notes

About the Cerebra mental health study

A key objective of the study is to improve the identification of mental health problems in autistic people with learning difficulties, who currently represent over a third (38%) of the UK autistic population. This study focuses on designing a practical and effective assessment tool for use in the clinic to identify anxiety and depression in autistic people with learning difficulties. This important research is a collaboration between the University of Birmingham, Aston University, Coventry University, Birmingham Community Healthcare NHS Trust, Coventry and Warwickshire Partnership NHS Trust and the leading UK autism research charity, Autistica.

About the Birmingham Science Talk

The announcement regarding the new Cerebra research will be made at the first of a series of autism events taking place in Birmingham during October and November hosted by Autistica in collaboration with Deutsche Bank. The events are free and anyone can attend. For further details on the talks including location and timings, click here: https://www.autistica.org.uk/get-involved/autism-talks

About autism

• Autism is a spectrum of developmental conditions. The condition changes the way people communicate and experience the world around them. Every autistic person is different. Some are able to learn, live and work independently but many have learning differences or co-occurring health conditions that require specialist support.
• It is estimated that 1 in every 100 people in the UK is autistic.1,2
• Research suggests that the differences seen in autism are largely genetic, but environmental factors may also play a role.
• There’s currently no ‘cure’ for autism, and indeed that is not a priority for the autism community, but there are a range of specialist interventions that aim to improve communication skills and help with educational and social development.

About Autistica

Autistica is the UK’s leading autism research charity. Autistica’s research is guided by families and autistic individuals, with the aim of building longer, happier, healthier lives for all those living with autism. They support research into autism and related conditions to improve autistic people’s lives and develop new therapies and interventions. Since 2004, Autistica has raised over £12 million for autism research, funding over 40 world-class scientists in universities across the UK. For more information visit: https://www.autistica.org.uk/ Twitter @AutisticaUK

About the University of Birmingham

The University of Birmingham is ranked amongst the world’s top 100 institutions. Its work brings people from across the world to Birmingham, including researchers, teachers and more than 5,000 international students from over 150 countries.

About Cerebra

Cerebra is the charity that works with families who include children with brain conditions. They listen to them, they learn from them, they work with them. They carry out research, they design and innovate, they make and share. What they discover together makes everyone’s life better. For more information visit their website: www.cerebra.org.uk.

About Aston University

Founded in 1895 and a University since 1966, Aston University has been always been a force for change. For 50 years the University has been transforming lives through pioneering research, innovative teaching and graduate employability success. Aston is renowned for its opportunity enabler through broad access and inspiring academics, providing education that is applied and has real impact on all areas of society, business and industry.

References

* Figure extrapolated from UK population data for West Midlands
1. Brugha, T. et al., (2011) Epidemiology of Autism Spectrum Disorders in Adults in the Community in England. Archives of General Psychiatry. 68 (5), 459-66.
2. Baird, G., et al., (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet 2006; 368: 210–15
3. Lever, A. G. & Geurts, H. M. (2016) Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 46, 6, 1916–30
4. Personal Tragedies, Public Crisis: The urgent need for a national response to early death in autism. A Report by Autistica, March 2016. Accessed at: http://s3-eu-west-1.amazonaws.com/autistica/downloads/images/article/Personal-tragedies-public-crisis-ONLINE.pdf#