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#

New Book on Autism in Our Postal Lending Library

We have a new book available from our Postal Lending Library.Through the eyes of me

‘Through the Eyes of Me’ by Jon Roberts

ISBN 9781912213009  £6.99

Through the eyes of a young child with autism. This lovely picture book is perfect for describing autism to a very young child. If you have a young child or grandchild with autism this would be a special book to read with them or their siblings. The little girl in the book is Kya, she tells us all about the things she loves to do, the things that interest her and the things she doesn’t like. Like any child with autism she has definite preferences. It is a beautifully illustrated book with pictures that weave in and out of the text. It is written by Kya’s dad, who says “we are all unique and precious and should embrace and love those differences with all our heart and being”.

For more information about our library please email janetp@cerebra.org.uk.

Cerebra Research Support Network – Help us make a difference

We are looking for people with lived family experience of childhood brain conditions to join our Research Support Network. Can you help us to make a difference?

What is the Research Support Network?

Our Research Support Network is made up of people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. As well as funding research, we work directly with families. By listening to families, we fund research that uncovers knowledge they want. Drawing on research, we help families develop the knowledge, skills and confidence they need to overcome challenges. Our Research Support Network will help us to listen to families and to translate research into resources that help families.

We’re looking for people who:
• are passionate about research and would like to learn more;
• can listen and learn from others;
• are committed to considering and representing the needs of families that have children with brain conditions.

What does it involve?

We need enthusiastic, thoughtful people who want to make a difference. Your role in the Research Support Network will involve reviewing and providing feedback on:
• materials developed by us for parents;
• the impact of our current research projects; and
• grant applications invited by us for funding by Cerebra.

What will you actually do?

As a Research Support Network member you will be invited to review our draft publications, participate in grant application reviews and evaluate the impact of our current research.

Reviewing draft publications will involve reading and commenting on draft publications, within an allotted time frame, before they are finalised. Your views on readability, relevance and presentation will be invited and fed into the final design of the information we provide for families.

Grant reviews will involve reading, evaluating and submitting scores and comments on grant applications within an allotted time frame. Your views will feed into final grant awarding decisions. The applications will contain a detailed summary of the proposed research in plain English and you will be asked to comment on whether the research is relevant and important to children and young people affected by brain conditions.

Evaluating the impact of our current research will involve reviewing documentation and, potentially, site visits.

Most Research Support Network activities can be done from home, but may occasionally involve meetings and site visits. You can volunteer for just one or two of the three activities or all three. This is a voluntary role but out-of-pocket expenses, including travel, subsistence and childcare to attend meetings and site visits, will be paid. You can manage your commitment by limiting how much you want to be involved in. Time constraints will apply to allow us to complete our work and deliver on our commitments in a timely manner.

Are you eligible?

We are looking for people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. You do not need to have a scientific or medical background as all documentation will be written in a ‘plain English’ format.

If you are interested in becoming a member, or just want more information, please contact Georgia Mappa at GeorgiaM@cerebra.org.uk

 

Cerebra’s Mission

We believe that every family that includes a child with a brain condition will have the chance to discover a better life together.
We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.
By ‘brain condition’, we mean any neurodevelopmental disorder (NDD) that affects the developing brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.

Our key values are summed up by three key words:
Positive: our optimism helps families see past every barrier.
Inquisitive: a spirit of relentless discovery drives everything we do.
Together: our researchers, practitioners and families go further when they travel together.

Current clinical practice identifies each condition individually with its own set of identifying characteristics, but many neurodevelopmental disorders (NDD’s) occur together and/or share similar risk factors, behaviours and challenges. Clinical thinking is changing and ‘multi-morbidity’ is accepted as the norm. We work across rather than within NDD’s, giving us a unique perspective within the charity research sector.

We Launch #FamilyFriday!

The Cerebra Innovation Centre has helped lots of families with their designs over the years.

From items which have everyday applications such as the Oxy-gem and the GoTo Seat, to their larger projects such as the Surfboard and Triathlon equipment which have helped children like Poppy achieve their dreams.

We want to celebrate all of our fabulous families with our new social media campaign – #FamilyFriday! Every Friday we’re going to dedicate our newsfeeds across our Facebook, Twitter and Instagram to all our families – whether you’ve been helped by the CIC or not.

We need your help! Share your positive pictures on any of our social media channels using the hashtags #FamilyFriday #CIC #CerebraInnovationCentre and we will post as many as as we can!

As well as celebrating the positivity of our community, we also want to highlight the great work that the team at the Innovation Centre does. Also they are always looking for new challenges so if you have an idea for a piece of equipment that would benefit your child, or have a problem that you think they may be able to come up with a solution for, please get in touch at cic@cerebra.org.uk.

Samuel and his family visit Cerebra HQ

Samuel, Angel, Jacky and Barry in our Fundraising Office

Samuel, Angel, Jacky and Barry in our Fundraising Office

We recently had some very special visitors at Cerebra HQ. Samuel Turner, his family and friend Angel are loyal supporters of Cerebra and have done lots if things to raise money for us including a bake sale at their local fete.

The whole family made the trip from their home in Essex to Cerebra’s Head Office in Carmarthen and spent the day in our fundraising department. They got to know some of our fundraisers and Samuel even took a donation from a supporter!

Samuel now volunteers for Cerebra by distributing our collection boxes in his local area and has even appeared on his local radio station to talk about Cerebra and the work we do.

It was lovely to meet you Samuel.