editor: liz pellicano
A Future Made Together: Shaping Autism Research in the UK they were impressed by the amount of work that goes into it, they were not convinced that research had made an impact on their lives.
skills, cognition and learning and the place of autistic individuals in society – research that affects people’s day-to-day lives is precisely the type of research the autism community want to see prioritised. How do we ensure that our research makes a difference to people’s lives?
One woman said:
Some of you will have either been involved in, know about or have used in some way research about autism – whether it has been being involved as a participant, coming up with a burning research question or reading about the findings once the study is complete. This research is critical to understanding autism, both its causes and its consequences, and has the potential to transform the everyday lives of those with autism and their families. But how close does UK autism research come to living up to its promise? Liz Pellicano, Adam Dinsmore and Tony Charman recently conducted the most comprehensive review of autism research in the UK ever undertaken. They set out to discover how much was spent on UK autism research, which areas were being addressed, and importantly what you – the broader autism community – wanted from autism research. The findings highlights the many strengths of autism research in the UK but also notes considerable challenges. One of these challenges was highlighted in a discussion with parents of children with autism. While
“I fill in all these questionnaires and do everything I can to help … but when it comes down to it, it’s not real life. It’s always missing that next step. It’s great that you’ve done this research and you’ve listened to my views … but now do something with it.” It turns out that too many people feel that there is a huge gap between knowledge and practice. It doesn’t help their child catch the train by themselves or keep themselves safe. And it doesn’t say how to get autistic adults into jobs and keep them there. People said that they don’t want to – or more often than not can’t – read about research in academic papers. They want to see real changes and real things happening on the ground for them, for their child, or for the person they work with. It turns out that, according to our analysis, British academics haven’t been taking much notice of real-life issues. The majority of autism research in the UK is concentrated on the underlying biology and causes of autism. Comparatively little research in the UK is conducted on identifying effective services for autistic people and their families, on diagnosis and interventions, or on societal issues. Yet this research –on public services, life
Without doubt, there needs to be significant investment in areas of autism research currently under-resourced in the UK. But in order to work out which areas need the greatest investment, researchers need to listen to what the community – what you – want from research. Yet autistic people and their families often feel their voices are not heard. This needs to change. To give you a chance to share your experiences of being involved (or not) in decisions about research or other areas of your lives, we are hosting a panel on 3rd December at IOE to discuss these very issues (see overleaf for details). We very much hope that you will be able to join us.
Brain Detectives is a new research and public engagement initiative launched earlier this year by CRAE. Brain Detectives is a club for young people aged 6 – 14 years who are interested in taking part in science-related research. At the club, children help us search for clues about how the brain and mind work, particularly about the ways that children perceive and understand things and how these perceptions change with age.
We recently saw 30 children in our 3-day May event and over 50 children in our 5-day August event in “The Space” at the IOE. They took part in research looking at how children process speed and time, how they judge the direction of moving objects and whether they are influenced by other people. Some research also used high-tech equipment, which tracked children’s eyes as they moved across the computer screen giving us a glimpse of what children can see through their own eyes!
If your child would like to become a Brain Detective, drop us an email at firstname.lastname@example.org.
Young people also learned lots about the brain and mind and the tools that psychologists use to understand how people think, remember and process information about the world. They also got to build a neuron!
Grant news: Can yoga therapy help children with autism ‘get ready to learn’? As you know all too well, many autistic students find it very difficult to gain academic qualifications and obtain full-time employment. CRAE is now offering two weeklong placements per year for secondary school or 6th form (14- to 18-year-old) students on the autism spectrum – one in June and another in October - in an effort to give students an idea of potential future work-related opportunities. Placement students will be able to experience all the different aspects of carrying out autism research – from coming up with ideas for research projects to entering and analysing data and contributing to CRAE’s engagement activities with the broader autism community – as well as getting accustomed to what it’s like to have a 9-to-5 job. Zak, our first placement student, had this to say about his time at CRAE: “During my placement, I had the opportunity to greatly further my knowledge of psychology, the brain, and autism. Contact us: email@example.com
Liz Pellicano, Prof. Anthony Costello and Prof. Stephen Hailes from University College London and community partner, The Special Yoga Centre, were awarded a grant from the Institute of Education and University College London to conduct a preliminary study to see whether yoga therapy can help promote the well-being of children with autism, especially their readiness to learn in the classroom. “I also got to lead a discussion on a paper detailing ‘Metaphor Comprehension in Autistic Children’ at the CRAE journal club. And I have developed a range of useful lifeskills, including multi-tasking, timekeeping and maintaining focus. “I hope this knowledge, and the skills I have learnt, will be of great use to me when I apply for a job, or head into research myself.” Members of CRAE also benefited greatly from hearing Zak’s perspective on different aspects of autism research. If you, your child or your student would like to apply for our work experience placement scheme, get in touch at firstname.lastname@example.org.
Autism can affect an individual in important ways, like in senses that seem as if they are working too well or in difficulties coping with changes to routines or new situations. These can lead to feelings of ‘overload’ or excessive worry in children, which can have a huge impact on their lives. Yoga therapy, which focuses on breathing and relaxation, has been shown to help reduce anxiety in children with disabilities. Liz and her colleagues want to see whether yoga delivered in schools can also help to calm children with autism and get them ‘ready to learn’. Keep in touch for updates! crae news
Dates for your diary!
CRAE news Hellos and goodbyes
Special CRAE Discussion Panel
Making Decision, Shaping Your Lives 3rd December 2013, 5:30–7pm, Jeffery Hall, Main IOE Building, 20 Bedford Way, London, WC1H 0AL.
We say hello to Lorcan
We were delighted
Kenny, CRAE’s Research and
to host Tulsi Korea
Lorcan has joined the CRAE
Gohil, who spent
team from The University of
a week at CRAE as
Nottingham and is working on a range of
work experience placement students. They
projects. He is also making sure you are kept
felt that their time at CRAE broadened their
People should have a say in the decisions that
up to speed with everything we do and that
understanding of what being a psychologist
affect their lives - at school, at work and in the
you have lots of opportunities to
involves. They also enjoyed talking through the
research field. Yet some people often feel left
get engaged with CRAE. You should hear
experiments carried out at CRAE, which gave
out of these decisions.
lots more from him via our Facebook, twitter
them a wider understanding of how theories are
This needs to change.
and e-mail over the coming months!
tested and applied to the outside world.
In this panel, we will discuss the ways that autistic
Rebecca McMillin and
people and their families might participate more
Janina Brede spent
The entire CRAE
fully in important everyday decisions and policies.
9 months at CRAE as
team (with the
Please come along to listen to our panel members
and to share your experiences!
working on several
Liz!) travelled to
different projects, gaining clinical and research
Free Film Screening
experience. They recently left CRAE to finish
Spain, in May to present their research at the
14th January 2014, 6pm, Jeffery Hall, Main IOE Building, 20 Bedford Way, London, WC1H 0AL
their final year of undergraduate study.
International Meeting for Autism Research
Both had become very much part of the
(IMFAR) and enjoyed tapas and sangria in
CRAE team and will be sorely missed!
between! Cathy Manning also travelled to
Following the success of our film screening
Bremen, Germany, for the European Conference
earlier this year, we have got together again with Director, William Davenport, and Ambitious about Autism to host the UK premiere of William’s second film “Citizen Autistic”, which discusses neurodiversity and autistic rights. We will be teaming up
Research Officer, Adam
in Visual Perception in August 2013 (winning
Dinsmore, also left to
a travel award to boot!) and Eilidh Cage
take up a new position
presented at the Joint Annual Conference of the
as Evaluation Officer at
BPS Developmental and Cognitive Sections in
the Wellcome Trust. And
Reading in September 2013.
Mark Taylor submitted his
with an esteemed panel of self-advocates and advocates to discuss these critical issues after the screening. We hope you can join us! Get your popcorn ready!
PhD and began a new job
Finally, a huge
working with Dr Angelica
Ronald at Birkbeck College
Cathy Manning and
looking at the early signs
Eilidh Cage who each
of psychosis. Both Adam and Mark are only Please email us at email@example.com to register for either of these events.
published in the journal, Autism Research, as
to see them often!
part of their PhD work.
Centre for Research in Autism and Education (CRAE) CRAE is a partnership between the Institute of Education and Ambitious about Autism, the national charity for children and young people with autism. CRAE’s aim is to “improve the outcomes for people with autism” by enhancing the research evidence for effective interventions, education and
has recently had a paper
down (or across) the road so we still hope
outcomes for individuals on the autism spectrum.
Thank you! At CRAE, we get to work with some amazing people and organisations. Our research would not be possible without their continued support and commitment ... so thank you
(you know who you are!)! Huge thanks also go to our funders, including alumni and friends of the Institute.
CRAE Facebook page launched! Back in June we launched a CRAE Facebook page and we are fast approaching our 200th follower! We are using Facebook to keep our followers up-todate with the latest findings in autism research, to advertise our public events and to give you a way of sharing your views on the topics we post. If you are on Facebook keep up with all of CRAE’s activities at facebook.com/CRAE.IOE
The latest research, news and events from The Centre for Research in Autism and Education (CRAE), Institute of Education (IOE)