winter 2014
issue 7
editor: liz pellicano
“This school is my home” Read more about our study on understanding the experiences of young people who attend residential special schools, inside
The 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.
Its aim is to “improve the outcomes for people with autism” by enhancing the research evidence for effective interventions, education and outcomes for children and young people with autism.
In this newsletter, Liz Pellicano reports on our recent activities, new research projects and upcoming events. Let us know what you think!
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In the last few months, we have held our Brain Detectives workshops specifically for children and young people with autism. These are half-day workshops, which give children and young people a chance to learn about how fun and interesting brain science can be. Children also get to take part in on-going research to help search for clues about how the brain and mind work.
Do you know a child or young person aged between 6 and 14 years who would like to become a Brain Detective? If so, then do get in touch (email: braindetectives@ioe.ac.uk). Children receive a Brain Detectives goodie bag and their very own Brain Detectives t-shirt after taking part. Parents are also asked to complete some background questionnaires about their children. We
cover any reasonable travel expenses for parents and children who are attending within Greater London. We look forward to seeing you at a Brain Detectives event soon!
Life at School: Understanding the experiences of young people who attend residential special schools
Local authorities are committed to ensuring that young people with special educational needs and disabilities are educated and have access to health and social care services within their local communities. But there is a significant minority of young people with special educational needs and disabilities who live and are educated away from home – many, some distance from their families – in residential special schools. These can range from part-time placements to those receiving aroundthe-clock 52-week care.
The young people identified for residential placements are potentially the most vulnerable children. Professionals and parents therefore need to be especially attentive to ensure that these young people’s rights are protected and promoted – that is, that they have the right to a family life, to be part of their local community, to be consulted and listened to and to be protected from harm. Our Life at School project, funded by the Office of the Children’s Commissioner, was designed to understand young people’s experiences – the good and the bad – of being schooled away from home. We also wanted to know how much they get to have a say in the decisions that affect their lives. In the past few months, we have had the privilege of seeing and speaking to more than 100 young people with a range of SEN and disabilities. Some of these young people were able to tell us what they thought about school and the ‘home’ part of school. Yet others, particularly
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those with limited or no spoken or sign language, were less able to do so. Eliciting the ‘voice’ of young people who do not speak or sign is notoriously difficult. To try to understand the lives of these young people, we used an ethnographic approach, spending time with these young people and observing and documenting their activities and interactions during the day. In some cases, we spent an entire day with them, from the moment they were up to when they went to bed, getting to know what a normal day at school – and home – looks like for them. We are still in the process of analyzing our data. But our initial analyses have certainly brought us closer to understanding some of the realities of the lives and experiences of young people growing up in school. We look forward to sharing our findings in a report due out later this year.
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Life as a CRAE doctoral student Studying for a PhD can be an incredibly rewarding (if not sometimes challenging!) experience. Two of CRAE’s PhD students, Cathy Manning and Eilidh Cage, describe their research as they come to the end of their journey.
Cathy Manning Often the first question people ask when I tell them I research autism, is “What got you interested in autism in the first place?” Well, there is an autistic savant in my family – an artist called Richard Wawro who produced beautiful artworks despite having limited vision. But it was also during activity camps with young children on the autism spectrum that I became more interested in the condition one that encompasses a very broad range of strengths and difficulties. At the same time, I was interested in how children see the world around them, and how this ability develops with age. We rely on visual information for almost all of our daily activities. Therefore, seeing the world in a different way could have a huge impact on a child’s everyday life. During my PhD, I wanted to find out more about how children with and without autism see things, and in particular, how they work out the directions and speeds of moving objects. These abilities are crucial for doing everyday things like catching a ball or crossing a road. My PhD research hasn’t always given me the answers I expected. For example, previous research has suggested that children with autism focus on small details and do not take in the whole picture. In one of my
studies, however, I found that children with autism can actually combine more information than children without autism in order to work out the overall direction of a shoal of “fish” (actually, dots). Instead, children with autism may not always know what information to filter out, which may lead to feelings of sensory overload. I have also learnt a lot from the individual children I have met. In my very first study, I asked children to judge the speeds of twinkling stars moving past the window of a rocket in a space-themed game. One autistic child told me that, actually, the stars could not possibly be twinkling if they were being viewed from a rocket, as it is only the earth’s atmosphere that makes stars appear to twinkle. This fact, which had never occurred to me, was a brilliant example of a child with autism’s insight into the world. Doing a PhD at CRAE has been a wonderful experience. I have been able to work with some fantastic children, families and schools, and I want to thank everyone who has contributed to my research projects.
Eilidh Cage The final study of my PhD was perhaps my most interesting. It focused on the social relationships of young people with autism.
We know that typical adolescents care a lot about what others – especially their friends – think about them. But I wanted to know whether young autistic people show this concern too, and what might be driving this concern (or lack of concern). To find this out, I interviewed 12 secondary-school students with autism about being ‘cool’, their friends and worries, and five Learning Support Assistants (LSAs) to gain their thoughts on the students’ experiences. What I found was that both young people and adults could describe times where the young autistic people had been concerned about their reputation. For example, one student described how he had learned more about computer games to make his friends like him. Yet many of the students said that they did not want to be cool and preferred to be true to themselves and to be accepted for being different. Also, they often did not understand the rules behind being cool, and struggled in particular with social rules. Overall, my study showed that young people with autism can be concerned about their reputation. The findings also prompt us to challenge what typical adolescents think is cool so that autistic adolescents can feel accepted for being different.
5th CRAE Annual Lecture: Autism in Africa On 14th October 2014, we were delighted to host internationally-renowned researcher Professor Charles Newton, from the University of Oxford. Professor Newton spoke on “Autism in Africa” informed by his own work in East Africa over the past 25 years. He highlighted the lack of research done in this area, but showed that awareness of autism in sub-Saharan Africa has been growing over the past decade, largely driven by parent-led initiatives. Professor Newton talked about how most treatment options for autism on the Kenyan coast are delivered by traditional healers, and raised the problems Contact us: crae@ioe.ac.uk
of a shortage of trained clinicians and autism interventions. He stressed the need for low cost, scalable options in the area. It was clear from Professor Newton’s wonderfully stimulating lecture that there is still so much work to do – both to understand autism and to help support autistic people and their families – in Africa and here in the UK. It was a jam-packed event, with many people on a waiting list. For those of you who were unable to make it, a recording is available on
CRAE’s website, which you can access here: bit.ly/craelecture14 and a summary is also available on Twitter: twitter.com/CRAE_IOE crae news
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CRAE news CRAE is 5 Years Old! This year marks the fifth anniversary of the opening of CRAE in 2009. Over the past years we’ve had the opportunity of meeting and working with so many fantastic people and organisations. Have a look at our 5-year Report crae.ioe.ac.uk to see what we’ve been up to. It’s been an amazing five years. We hope you’ve enjoyed being part of the journey and we look forward to the next five!
Send your entry to: CRAE XMAS CARD COMPETITION, CRAE, Institute of Education, University of London, FREEPOST LON 8344, London WC1H 0BR.
Join the conversation! At CRAE, we use social media to spread the word about our own and others’ autism research and activities and to give the autism community online spaces where they can make their voices heard. Have your say. Share your stories, images, experiences. And get involved. Interact with us on Twitter, Facebook, Flickr and YouTube. Search CRAE IOE.
We need you! Here at CRAE, our research totally depends on the wonderful participants who take part in our studies. We are currently looking for people of all ages, with and without autism, to help us out! If you, or anyone you know, might like to be involved please give us a shout (crae@ioe.ac.uk, 020 7331 5126) and we’ll tell you about the studies. Thanks!
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It’s all change at CRAE… We would like to introduce you to Sachita Suryanarayan, Felicity Sedgewick, and Soo Jung (Kate) Yoon who have all just began their PhDs with CRAE and we look forward to keeping you up-to-date with the discoveries they make along the way. We also say hello to Amy Alexander (pictured above), an undergraduate placement student from Cardiff University, who will spend the academic year with us to gain experience of working in an autism research centre. Most recently, Rakhi Kabawala has joined us from only a few offices down the hall and Angelica Brassachio joined us from the Pisa Vision Lab in Italy on an Erasmus 6-month internship. They will be working with Themis and Lenny on the ‘Seeing the World Differently’ project. You will be hearing lots more from all six throughout the year! Goodbyes… June saw Anna Rudnicka’s last day at CRAE. Anna has spent the last 9 months on placement with us as part of her undergraduate degree in Psychology at The University of Westminster. In July, we said
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goodbye to Owen Parsons, who has been working with Anna Remington on a project looking at special interests in young people with and without autism. Owen left CRAE to start a PhD in Cambridge. In September, CRAE also said goodbye (for now) to PhD students Eilidh Cage and Cathy Manning who have now handed in their theses, but will be back for their vivas at the end of the year. We would like to say a HUGE thanks to Anna, Owen, Cathy and Eilidh for all their hard work, and wish them all the best with their future studies and careers in psychology. We will miss them very much! Visitors Over the summer, we were pleased to host visiting PhD students, Nora Choque-Olsson and Marco Turi. Nora is based at the Centre of Neurodevelopmental Disorders at the Karolinska Institute (KIND) in Sweden and Marco is from the Pisa Vision Lab at the University of Florence, Italy. Conferences The CRAE team travelled to Atlanta, USA, in May to present their work at the International Meeting for Autism Research (IMFAR). While there, Liz and Lorcan joined some of the top names in autism research and some prominent autism advocates for a Q&A session on twitter (http://bit. ly/1gxxIsp). Not content with one American conference, Cathy Manning rushed straight from IMFAR to Florida to present at the Vision Sciences Society conference the next day! Anna Remington also travelled to Boston, USA, to present at the Cognitive Neuroscience Society conference in April, and Eilidh Cage presented at the BPS Developmental Section Conference in Amsterdam, Netherlands in September 2014. So much jet-setting!
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