issue 5

autumn 2013

editor: liz pellicano

inside crae

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.

inside crae

science club

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 braindetectives@ioe.ac.uk.

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: crae@ioe.ac.uk

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 crae@ioe.ac.uk.

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

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.

Visitors

We say hello to Lorcan

We were delighted

Kenny, CRAE’s Research and

to host Tulsi Korea

Communication Officer.

and Krishna

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

placement students

exception of

and to share your experiences!

working on several

Liz!) travelled to

Conferences

different projects, gaining clinical and research

San Sebastian,

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

congratulations to

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 crae@ioe.ac.uk 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