issue 10
spring/summer 2016
“If anyone slightly touches me, I feel like I’m being tickled to death” Our ‘Seeing the World Differently’ project recently came to an end. Read more about our findings inside...
editor: liz pellicano
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‘Seeing the World Differently’: End of Part One Our ‘Seeing the World Differently’ project, funded by the UK’s Medical Research Council, recently came to an end. The project was designed to understand the ways in which autistic children and young people process information coming into their senses. Each of us have different sensory preferences for touch, taste, sound, smell and sight. For example, some of us love the smell of cut grass, the sight of glittering lights and the touch of fluffy cushions, whereas others may dislike the taste of certain foods or the sound of thunder and lightning. Many autistic people can be more or less sensitive to certain, everyday sensory information than others. In some cases this can be enjoyable or pleasurable but in others it may be uncomfortable or even distressing. As well as carrying out research into the processes underlying how autistic children might see the world differently, we raised awareness of sensory differences and what people might do about them in the following ways:
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1. We made a film in which young autistic people told us how they ‘see the world’ in their own words. We worked with staff and students at the Hendon Autism Resource Provision (HARP) at Hendon School in London, producer Dr Jake Fairnie and autistic campaigner, Robyn Steward, to create the film, which we hope will raise awareness of sensory differences. 2. We have also made a brochure all about sensory issues in autism, with the help of Robyn Steward and wonderful illustrator, Ben Connors. The booklet is designed for schools, which we hope will help teachers understand how much sensory sensitivities can affect their autistic students. 3. In March 2016, we held a workshop for practitioners to both present the findings of our study and to consider what these findings might mean for children’s lives in school and at home. We were also joined by fabulous designer, Dr Katie Gaudion, who led a creative Ready, Steady, Make! workshop to get us all thinking about our
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senses – and in particular our sensory preferences and challenges. We also asked practitioners to consider several outstanding questions regarding the extent and nature of sensory differences in autistic people by reflecting in particular on their practical expertise. Ben Connors produced wonderful visual summaries of our discussions. Over the last three years, we have seen over 250 wonderful autistic and nonautistic children, young people and adults– many several times - who very kindly took part in our research. All of which couldn’t have been done without the amazing staff, students, schools and collaborators, who worked tirelessly on this project. We feel very privileged to have worked with all of them. Thank you so much! To access all these resources, please visit us at crae.ioe.ac.uk.
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DE-ENGIMA: Playfully empowering autistic children...with robots!
Liz Pellicano and new CRAE member Teresa Tavassoli are working with several schools in London to see if this might be the case.
You may remember our research called ‘A Future Made Together’, a project that looked at what the autistic community – autistic adults, parents, practitioners and researchers – wanted from autism research. We found that there was very little research (only 5%) currently dedicated towards understanding the most effective services for autistic people and their families.
Sign up to the newsletter for this project at de-enigma.eu and stay tuned for more details!
On 28th April, during the three-hour House of Commons debate about autism, our research was mentioned by Jon Cruddas, MP for Dagenham and Rainham, highlighting the lack of research on services. We hope that this mention puts things right!
less threatening than humans, with all their complex subtleties and nuances. Robots might therefore be a useful tool to help enhance autistic children’s social skills within a therapeutic context.
This project is designed to help support autistic children’s emotional understanding, as robots are perceived to be more predictable, less complicated, and potentially
Improving Autistic People’s Access to Justice Access to justice is a key issue for many sectors of society, but can be particularly problematic for those with communication difficulties. This makes us think that autistic people may be at risk of encountering difficulties in the court system. Many aspects of autism (difficulty making sense of non-verbal cues, understanding nonliteral language) could result in people on the spectrum being taken advantage of in negotiation or dispute settings. Here at CRAE, we are interested in hearing about the experiences of autistic people who have been involved in the family court. If you, or somebody you know, has had experience dealing with autism in relation to the family courts (in any capacity) it would be great to hear from you. Please contact Dr Anna Remington (a.remington@ucl.ac.uk) for more information, or if you would like to be involved. We hope that by understanding people’s experiences, we can produce recommendations for adjustments that can be made to improve the process for autistic people and their families. Contact us: IOE.crae@ucl.ac.uk
Listen to the debate via: bit.ly/1rb5Rnu
Brain Detectives Brai n
Robots are increasingly being used in all parts of our lives – workplaces, schools, care homes. The CRAE team is part of a large Europeanfunded project, DE-ENIGMA, which aims to create and evaluate the effectiveness of a new-and-improved human-like robot.
Newsflash!
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In May half-term we completed our 10th Brain Detectives event in which we saw over 40 autistic and typical children and teenagers!
Brain Detectives is a fun science club held at the UCL Institute of Education open to all children and young people, who are interested in taking part in some real ongoing research and learning about the
brain and the mind at the same time. If you know anyone who might be interested in coming along to one of our free-to-attend half-day sessions, do contact us via: E: ioe.braindetectives@ucl.ac.uk W: crae.ioe.ac.uk | T: 020 7331 5126
Special CRAE Discussion Panel: Autism & Technology Technology, whether it be smartphones, tablets, laptops, is ever-present in our daily lives. It is changing the way that people live – at home, at work and in the classroom – so much so that there are frequent calls in the popular press for a ‘digital detox’. In February this year, we hosted an event to debate and discuss the future of technology for autistic people and the ethical issues surrounding its development and use with four renowned experts, including Dr Matthew Goodwin
(Northwestern University, Boston), Dr Sue Fletcher-Watson (University of Edinburgh), Dr Porayska-Pomsta (UCL Institute of Education) and Louisa Martin (Artist and Wellcome Trust funded visiting researcher at CRAE) and more than 150 members of the audience. You can view the recording of the event here: bit.ly/1J0KXQA. crae news
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Upcoming Event ‘In Conversation with Steven Kapp’ Tues 12 July 2016: 16:00 - 17:00 (BST) 1.20 Seminar Room, Malet Place Engineering Building, University College London, WC1E 6BT We are delighted to host Dr Steven Kapp, an autistic scholar on autism and long-standing activist and advocate for people with atypical development and neurological differences. His work in research, policy, and practice aims to improve the quality of life of autistic and disabled people through better understanding, acceptance, and support. He currently serves as a Senatenominated, Governor-appointed member of the California State Council on Developmental Disabilities and also contributed to the revision of the autism diagnosis in DSM-5 with the Autistic Self Advocacy Network (ASAN). In this special CRAE seminar, Steven will speak on social justice and autism, with a particular focus on contrasting autism and psychopathy as general opposites. Steven will also take part in an interactive post-panel discussion on his work. This is a free-to-attend event but you will need to book a place via our website in advance crae. ioe.ac.uk. We very much hope you can join us.
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 autistic 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.
CRAE news Hellos and goodbyes We have had many hellos and goodbyes in the last 6 months! Liz Pellicano returned from maternity leave in January this year. Her baby daughter, Freya, just turned 1! The fabulous Dr Mel Bovis joined us in March 2016 as CRAE’s new Research Communication and Engagement Officer. She obtained her PhD at UCL and held a research position exploring the role of nanotechnology in cancer research and has joined us to help drive our communication and outreach work. You will be sure to hear from her soon! Dr Teresa Tavassoli started at CRAE in May 2016 as the new postdoctoral fellow on our DE-ENIGMA project. Teresa did her PhD at the University of Cambridge under the supervision of Simon Baron-Cohen before spending 4 years working at the Icahn Autism Center in New York on understanding sensory perception in autism. We are very pleased to have her on the CRAE and DE-ENIGMA teams! Welcome also to Clare Truman who has started a PhD at CRAE. Clare currently works with autistic children and young people as a teacher at Freemantles School. She is interested in the educational experiences of children diagnosed with Pathalogical Demand Avoidance (PDA) and what this label means to people. Sadly, we had to say goodbye to several wonderful people these past few months. Dr Themis Karaminis and Dr Lenny Neil, both of whom worked on Liz Pellicano’s Seeing the World Different project, went on to bigger and better things as the grant ended – Themis to a postdoctoral fellowship with Plymouth and Oxford Universities and Lenny to have a beautiful baby, Greta. They are very sorely missed!
More recently, we said goodbye to Kathrin Olsen, a PhD student from Norway, who has been visiting CRAE these past 6 months. She has been working on understanding what ‘inclusion’ really means for autistic children in mainstream nurseries and has been a wonderful member of the CRAE team. Janina Brede has left us – for the second time! Janina first came to us as an undergraduate placement student and has recently completed a study looking at the educational experiences of young people educated in the NAS Robert Ogden School’s Inclusive Learning Hub. Finally, Katy Warren and Hannah White, both from the University of Bath, have spent the past year with us on their undergraduate placements, getting stuck in to a whole host of different research projects. They have all been AMAZING members of the CRAE team. We are very sad to see them all go but wish them all the very best for whatever comes next! Congratulations! Huge congratulations to Dr Katie Gaudion and Dr Rachel Walker who successfully passed their vivas! And to CRAE alumnus Cathy Manning who was recently awarded the distinguished dissertation award by the International Society for Autism Research (IMFAR), for her PhD research. Finally, to Dr Anna Remington for being promoted to Senior Lecturer at CRAE. Fantastic achievements! Conferences Many members of the CRAE team were lucky enough to attend and present at this year’s International Meeting for Autism Research (IMFAR) in Baltimore, USA, in May this year. We shared a variety of research and heard about the latest developments in autism research. We were also part of a Spectrum Live Twitter chat and were tweeting galore! Dr Anna Remington will shortly be heading to Japan to present some of her latest findings and Dr Lenny Neil will be travelling to Belfast to talk about her research.
CRAE is a partnership between the UCL Institute of Education and Ambitious about Autism, the national charity for children and young people with autism. Its aim is to “help enhance the lives of autistic people and their families” by improving the research evidence for effective interventions, education and outcomes for those on the autism spectrum.
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