Explaining autistic peopleâ&#x20AC;&#x2122;s sensory sensitivities, and should we even be using the term â&#x20AC;&#x2DC;autistic peopleâ&#x20AC;&#x2122;? More inside...
editor: lorcan kenny
Congratulations Professor Pellicano! It is with great pleasure that we announce to you that the director of CRAE, Liz Pellicano, has been appointed Professor of Autism Education at UCL Institute of Education. Liz is a world renowned developmental cognitive scientist and educational psychologist. This promotion is recognition of her commitment to understanding the distinctive opportunities and challenges faced by autistic people and tracing the impact
of these on their everyday lives. As well as making a significant contribution to the scientific understanding of autism, Liz has continually championed the inclusion of the autistic voice in every aspect of autism research and passionately driven improvements in the public
understanding of autism. Liz continues to re-shape the future of autism research in the UK and beyond, we look forward to keeping you up-to-date with the developments we make.
Is a person “autistic”, do they “have autism”, or are they “on the autism spectrum”? were some notable differences between these groups that deserve some attention.
The words we use are important. The words we use to describe people are particularly important because they can impact on how we think and feel about those being described. To better understand people’s preferences about how to describe autism we analysed the results of a survey conducted by The National Autistic Society. We want to make sure the words used to describe autism are encouraging us, as a society, to understand and accept both autism and autistic people. Autistic people, their parents, family members or friends and professionals who work in the field told us about their preferences. This survey showed that there is no single way to describe autism that was universally accepted by any of the different groups who responded. There
One noteworthy finding was that more than 60% of autistic respondents endorsed the use of the word ‘autistic’ compared with less than 40% of professionals who work in the field. Almost half of the professionals who responded, on the other hand, endorsed the term ‘person with autism’ compared with only 28% of autistic people. An example of why some people prefer identity-first language (e.g., ‘an autistic person’) was given by one autistic participant, who said:
“Separating the person from their autism is damaging, as it reinforces opinions about autism being a ‘thing’ that can be removed, something that may be unpleasant and unwanted, and something that is not just another aspect of a whole, complete and perfect individual human being.” Professional’s preferences likely come from a general set of guidelines about how to
describe disability that they were taught as part of their training. Nevertheless, the results of the survey show that many autistic people do not feel person-first language represents the way they think and feel about their autism. Instead, many autistic people report preferring the adjective form of the word ‘autistic’ because it better fits with their idea of what autism is. There is no single way to describe autism and there probably never will be. That is not an issue. We must all remember that when somebody is being described they have the right to be described with words that fit their beliefs. When you are deciding whether to call somebody autistic, a person with autism, or a person on the autism spectrum you have a responsibility to respect their right to be described with words they are happy with. You can read about this issue, and others like it, in more detail or listen to a podcast about the research here: bit.ly/ describingautism
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Ryan’s work experience placement At CRAE, we offer work experience placements for autistic teenagers to gain an insight into the life of a researcher. These placements have been a huge success in the past and our most recent placement was no exception! Read what Ryan had to say about his time at CRAE below. On my first day, I didn’t know what to expect on my work placement with CRAE—although I met with Anna Remington a few weeks before to discuss what I would like to do. Anna made a timetable for me, so that I would know ahead of time what to do. I also liked the idea of going somewhere in town, traveling on the tube independently to get there and being in central London—so different than school (school is sooo boring…).
Sensory sensitivities explained Being sensitive to certain sights, smells, sounds, touch and tastes is part and parcel of autism. Unfortunately, few people understand what these so-called sensory sensitivities are, how they might impact children - inside and outside the classroom - and what can be done to help.
As part of our Medical Research Council funded ‘Seeing the World Differently’ project, we got together with illustrator, Ben Connors, and CRAE’s visiting research associate, Robyn Steward, to create an information leaflet about autistic people’s sensory issues. The leaflet was aimed particularly at people supporting autistic children and young people in schools but should be useful for anyone interested in these issues. You can download it for free from our website: bit.ly/sensoryissues or get in touch (firstname.lastname@example.org) if you would like us to send you some hard copies. We hope you get as much out of it as we have!
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During my work placement, I was surprised to find the staff so helpful. I was given the responsibilities to enter research data into Excel, and then Anna explained more about her research, which was interesting. I also enjoyed drawing a building from a photo album from the IOE archives. Some of the things I learned about research and how the brain functions was very technical and I have a lot of respect for the work that is being done at CRAE. I was able to meet with other staff that worked at CRAE and IOE Press, and I even met a friendly woman at the library who ate with me and chatted during lunchtime. They all were really helpful and I got to learn new skills like working with InDesign. Which I only did briefly, but would like to learn more about. Besides my time in the library, I also had a chance to chat with Robyn [Steward], who nicely made suggestions to me about art schools, as I am doing my GCSE’s this year. To sum up my experience, I can say that I really enjoyed my time at the Centre for Research in Autism and Education, and I hope I can keep in touch with everyone there. I would also recommend the placement to others, and I would like to go back to visit one day. If you, or somebody you know, would be interested in the placement scheme we run for autistic secondary school pupils please contact us via email: firstname.lastname@example.org crae news
CRAE annual lecture Thursday 12 November marked our 6th Annual Lecture, and this year we welcomed Dr Paul Shattuck, Director of Autism Life Course Outcomes Research Programme at the A.J. Autism Institute in Philadelphia. Over 200 guests heard Dr Shattuck discuss his experiences of autistic people’s transition from school to adult life, outlining evidence his research group have gathered to demonstrate the services “cliff-edge” so many people refer to when talking about autism in adulthood. In his engaging lecture, he described how in the USA only 58% of autistic people in their twenties have ever worked since leaving high school – a smaller percentage than other disability groups. Dr Shattuck emphasised the need for a holistic approach to increase autistic people’s life chances by giving them the support they need to be involved with their local community through paid internships, employer training and crucially ongoing support. Despite the bleak figures, Dr Shattuck descibed his hope that we live in a generation of autistic and parent advocates that can and will drive political change for autistic people. You can watch the full lecture online bit.ly/6thCRAELecture and see what people had to say on twitter using the hashtag #CRAELecture
Share experiences of the legal system with us! We are conducting a new research project which aims to understand autistic people’s access to justice. If you, or anybody you know, have had any experiences that you would like to share with us relating to this project then please get in touch with Anna (email@example.com) crae news
Hellos and goodbyes We are pleased to welcome Professor Dermot Bowler from the Autism Research Group at City University, who will be spending time at CRAE while he is on sabbatical. We also welcome Susanna O’Brien – who has done some fantastic work on a classroom attention project. Welcome to Kathrin Olsen, who has joined CRAE as a visiting PhD student from the University of Oslo. And a huge welcome BACK to Janina Brede, who completed an undergraduate placement at CRAE. Janina now works on a project evaluating a model of inclusive education for autistic children. We have welcomed our own in-house visual artist, Louisa Martin, (who will develop an art installation exploring the interplay between autistic subjectivity and technology) as well as Katy Warren and Hannah White, who are both undergraduate placement students from Bath University. Sadly, we say goodbye to Dr Themis Karaminis, who worked on our Seeing the World Differently project. Themis will be hugely missed and a welcome addition to the University of Plymouth in his new post. We also sadly said goodbye to Angelica Brasacchio; an Erasmus placement student from Pisa Vision Lab and to Amy Alexander, an undergraduate placement student from Cardiff University.
Congratulations! First and foremost, we would like to extend our warmest congratulations to our director Liz, and her husband Marc, on the arrival of their gorgeous baby girl, Freya. Congratulations also to Dr Anna Remington has been awarded funding from the UCL Grand Challenges scheme for research about autistic people’s access to justice. A massive well done to Lorcan Kenny, too, who has secured funding to pursue his own PhD research within CRAE! Finally, huge congratulations to Lenny (Louise) Neil, who successfully defended her PhD examinations to become Dr Neil! Conferences As ever, we have been travelling around the country, and indeed the globe to share updates about our research. Lorcan Kenny spoke at the first Shaping Autism Research seminar in Edinburgh and Dr Themis Karaminis spoke about our MRC-funded research into visual perception in autism at the Neurodevelopmental Seminar series held in Oxford over the summer. CRAE was also very well represented at both the European Conference of Visual Perception in Liverpool and at the British Psychological Society Developmental and Social Section conference held in Manchester. Further, our Director Liz Pellicano gave no less than three talks at the Asia Pacific Autism Conference in Brisbane, which by all accounts were very well received.
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 “improve the outcomes for people with autism” by enhancing the research evidence for effective interventions, education and outcomes for children and young on the autism spectrum.
Visit us at crae.ioe.ac.uk