Action on Autism Research in Scotland

Action on Autism Research in Scotland Improving Impact Seminar Series Seminar 4 9, 10 June 2014 Lord Hope Building, University of Strathclyde Educational Research, Interventions and Impact

02 Action on Autism Research in Scotland Educational Research, Interventions and Impact 9, 10 June 2014 Welcome We are delighted to welcome you to the Fourth Two-day Seminar in the Action on Autism Research in Scotland Seminar Series which aims to link policy, research and practice: An international perspective on Psychological, Clinical, Social and Educational fields of research into autism will show the quality and level of research evidence needed to inform policy direction. Internationally known speakers will lead on the topics shown in this programme and their presentations will be complemented by local Scottish research presentations: each will be asked to demonstrate and explore how their own research links to policy and practices. International research studies make an enormous contribution to our wider knowledge base and we would like to understand better where Scottish research sits in this picture, where we may be making, or could make, a unique, distinctive or culturally relevant contribution and how this can link to the Scottish policy direction encapsulated in the Scottish Government s ten year Autism Strategy. PROFESSOR TOMMY MACKAY Professor Tommy MacKay is Director of Psychology Consultancy Services, Co- Founder of the National Centre for Autism Studies at the University of Strathclyde and Clinical Director of the National Diagnosis and Assessment Service for Autistic Spectrum Disorders. He has over 40 years experience in working with children and young people with ASD and other difficulties. His work has won many national awards as an outstanding and original contribution to psychology. He has been described by former UK Prime Minister Gordon Brown as an inspiration and a visionary. PROFESSOR ALINE WENDY DUNLOP Professor Aline Wendy Dunlop leads the Action on Autism Research in Scotland Seminar Series Organising Team. She is Professor Emerita at the School of Education at the University of Strathclyde, where she was the first Course Director of the Masters in Autism. Aline-Wendy is a member of the Scottish Government Autism Reference Group, Chair of Autism Network Scotland s Steering Group and was awarded an MBE for services to autism in Scotland in June 2013: She extends a huge thank you to each of our funders: Scottish Government, Research Autism and Scottish Autism. The series was launched in November by Scotland s Minister for Public Health, Mr Michael Matheson. Each Seminar will be chaired by Professor Tommy MacKay in his role as Interlocuteur for the Series. The development of the series has been led by Professor Aline-Wendy Dunlop with the support of the Organising Team.

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04 Action on Autism Research in Scotland Improving Impact Seminar Series Lord Hope Building, University of Strathclyde PROGRAMME DAY 1 Monday 9th June 2014 09.45 Educational Research, Interventions and Impact Opening remarks Professor Aline-Wendy Dunlop and Professor Tommy MacKay 10.00 11.00 Dame Stephanie Shirley, The Shirley Foundation Introduced by Professor Aline-Wendy Dunlop 12.30 13.15 Lunch (posters + impact) 13.15 14.15 Professor Tony Attwood Continuity of education for people on the Spectrum: strengthening the relationship of research to practice to the benefit of people with autism. 14.15-14.35 Break 11.00 11.20 Break 11.20-12.30 Seminar 1 3 Scottish Researchers: Short Presentations. Chaired by Dr Jackie Ravet 1. Catriona Stewart Experiences of girls with Asperger s syndrome/asc and anxiety: Where can we be what we are? 14.35 16.00 Autism Seminar Series Film Compilation followed by round table discussion focusing on the relationship of research, policy and practice in the light of the Action on Autism Research Seminar Series. 16.00-16.30 Summing up from chair 2. Barbara Dritschel Knowing me knowing you: Do individuals with autistic spectrum disorders have a theory of their own mind? 3. Carolyn Brown and Shirley Paterson The contribution of educational psychologists to the identification, assessment and diagnosis of autism : a Scottish perspective.

Seminar 4 05 SPEAKERS DAY 1 DAME STEPHANIE SHIRLEY Dame Stephanie Shirley is an ardent philanthropist and has invested over 50m to various autism projects. The International Meeting for Autism Research (IMFAR) honoured her with its Research Advocate Award last year. She founded the Kingwood support charity for 70 challenging adults with autism because she was unable to find facilities for her late son Giles. And also the Prior s Court residential school, Autism Cymru and Autistica charities plus many other autism projects including the Shirley Imaging Suite of Edinburgh s Patrick Wild Research Centre. CAROLYN BROWN The contribution of educational psychologists to the identification, assessment and diagnosis of autism : a Scottish perspective. Carolyn Brown is a Depute Principal Psychologist with Fife Council Psychological Service. She has worked in Fife Education Service as an educational psychologist for over twenty- five years. She has contributed to a number of national groups involved with autism including the HMIe Autism Report and the Scottish Government s Education Autism Working Group. She has been a long-standing member of the Scottish Autism Reference Group and she is currently Chair of the Association of Scottish Principal Educational Psychologists (ASPEP). She has had a long-term interest in children and young people on the autism spectrum based on her contact with pupils, schools and families as well as her involvement in policy development and strategic planning within Fife Council. This includes being a founding participant over the last ten years in developing and embedding in practice, a multi-agency autism assessment and diagnostic process and care pathway. Her memoir Let IT Go is available from Amazon. DR CATRIONA STEWART Experiences of girls with Asperger s syndrome/ ASC and anxiety: Where can we be what we are? Dr Catriona Stewart: has studied autism for over 12 years, carrying out firstly a research MSc and then a PhD funded by Edinburgh Napier University which focused on girls with Asperger s syndrome and anxiety (2011). An extract of the findings were published in professional journal Good Autism Practice in 2012. Dr Stewart founded Scottish Women with Autism Network (SWAN) in partnership with Autism Network Scotland in 2012. Work experience includes as a university lecturer, student training supervisor and professional mentor; Dr Stewart s passion is to improve awareness and understanding of autism in girls and women and what this means in a real, lived sense. She leads talks and workshops for public access and CPD events. BARBARA DRITSCHEL Knowing me knowing you: Do individuals with autistic spectrum disorders have a theory of their own mind? Barbara Dritschel is a lecturer in Psychology and Neuroscience at the University of St Andrews. Her work focusses on mechanisms underlying memory and social problem-solving deficits that contribute to depression, eating disorders and autism spectrum disorder. Her research in autism spectrum disorders has examined how deficits in autobiographical memory and social problem -solving are related and also investigated a range of autobiographical memory deficits in both children and adolescents. A current goal is to identify mechanisms for these deficits and to use these findings to design interventions to improve both memory and social functioning in autism spectrum disorder. SHIRLEY PATERSON The contribution of educational psychologists to the identification, assessment and diagnosis of autism : a Scottish perspective. Shirley Paterson is a Depute Principal Psychologist with South Lanarkshire Council Psychological Service. She has worked for South Lanarkshire for the past 7 years, having previously spent 15years with Stirling Council. She is currently a member of the Scottish Government s Advisory Group for Additional Support Needs and has presented at many conferences both in Scotland and abroad. In 2010, she worked for a time in a development centre for autistic children in China. In her own Service, she has a strategic role in both early years and in autism-related issues, and is involved with partner agencies in the revision of diagnostic and early intervention processes. PROFESSOR TONY ATTWOOD Continuity of education for people on the Spectrum: strengthening the relationship of research to practice to the benefit of people with autism. Tony is a clinical psychologist who has specialised in autism spectrum disorders since he qualified as a clinical psychologist in England in 1975. He works in his own private practice, and is also adjunct professor at Griffith University, Queensland and senior consultant at the Minds and Hearts clinic in Brisbane. His book Asperger s Syndrome A Guide for Parents and Professionals has sold over 350,000 copies and has been translated into over 25 languages. He has worked with over 8,000 individuals of all ages with Asperger s syndrome or an Autism Spectrum Disorder. Tony presents workshops and runs training courses for parents, professionals and individuals with Asperger s syndrome all over the world and is a prolific author of scientific papers and books on the subject. His book The Complete Guide to Asperger s Syndrome was published in October 2006 and has several subsequent books published by Jessica Kingsley Publishers, Future Horizons Inc. and Guilford Press.

06 Action on Autism Research in Scotland Improving Impact Seminar Series Lord Hope Building, University of Strathclyde PROGRAMME DAY 2 Tuesday 10th June 2014 09.30 Arrivals 09.45 10.00 Opening remarks Professor Tommy MacKay and Professor Aline-Wendy Dunlop 12.30 13.15 Lunch (posters + impact) 13.15 14.15 Professor Tommy MacKay A fresh look at prevalence and cognitive ability: The implications for education and the autism spectrum in Scotland (Drawing from the Scottish Government funded Microsegmentation Project for Lifelong Autism Education) 10.00 11.00 Dr Justin Williams, University of Aberdeen Autism and the Science of Social Learning: from Scanner to Stage 14.15-14.35 Break 11.00 11.20 Break 11.20-12.30 Seminar 2-3 Scottish Researchers Short Presentations. Chaired by Professor Aline-Wendy Dunlop 1. Dr Evelyn McGregor Fact or fiction: Narrative-related interests, behaviours and skills in children with autism 2. Dr Jackie Ravet Interprofessional Education in Autism: What Difference Does It Make to Professional Development, Workplace Practice and Individuals on the Autism Spectrum? 3. Jayne Porter and Moira Park From Guidance to Use: taking the Autism Toolbox, a resource for Scottish schools, onto the web. 14.35 16.00 Impact Seminar What next in Autism Research? Professor Tony Charman, Dr Arlene Cassidy and Professor Tommy MacKay Linked Interests and Collaborative Working on Intervention and Impact across the UK 16.00-16.30 Chair and Key Speakers What is the message for Scotland in Policy, for Research and for collaboration? Summing up from speakers and chair 16.30 Departures

Seminar 4 07 SPEAKERS DAY 2 DR JUSTIN WILLIAMS Autism and the Science of Social Learning: from Scanner to Stage Justin commenced his scientific career in 1993 when he took time out to study ecology and evolutionary biology before returning to clinical practice to pursue postgraduate training in psychiatry. He then specialised in Child Psychiatry and moved to Dundee where he began collaborating with Andrew Whiten and David Perrett from the University of St. Andrews. Together they developed the mirror neuron theory of autism. In 2000 he took up the post of Senior Lecturer in Child & Adolescent Psychiatry at the University of Aberdeen where his research continues to focus on the neural basis for social learning, particularly in relation to motor function and autism, and still with an evolutionary bent! At the same time he serves as Consultant at Royal Aberdeen Children s Hospital where he has been providing psychiatric input into the tertiary service for children and young people with complex mental health needs, many of whom have autism spectrum disorder. For published articles see: http://www.abdn.ac.uk/staffnet/profiles/justin.williams Also: http://www.ncbi.nlm.nih.gov/pmc/articles/pmc2387112/ DR EVELYN MCGREGOR Fact or fiction: Narrative-related interests, behaviours and skills in children with autism Dr Evelyn McGregor is a member of academic staff in the School of Education at the University of Edinburgh, a developmental psychologist, and currently Director of Post-Graduate Studies. Evelyn and colleagues formed the Scottish Autism Research Group (SARG): an interdisciplinary group which has run several funded seminar series for academics, practitioners and the autism community in Scotland. Her interests include intervention to help people with autism learn about belief, narrative skills and interests in autism and job interview skills in autism. DR JACKIE RAVET Interprofessional Education in Autism: What Difference Does It Make to Professional Development, Workplace Practice and Individuals on the Autism Spectrum? Dr Jackie Ravet is currently a senior lecturer in the School of Education at the University of Aberdeen. She is also director of the Autism & Learning programme - a Masters pathway for postgraduate students. Jackie has a background in teaching pupils on the autism spectrum and also held the post of Autism Development Coordinator for Moray Council. She now lectures and researches in autism and inclusive practice. JAYNE PORTER From Guidance to Use: taking the Autism Toolbox, a resource for Scottish schools, onto the web Before joining Autism Network Scotland, Jayne was a specialist Class Teacher and subsequently Deputy Head Teacher at New Struan School A Centre for Autism. Jayne has a range of National and International teaching experience having taught at the International Schools in Paris and Milan and in public and private sector schools in Scotland. Jayne leads Autism Network Scotland s Education and Early Years Networks and has ongoing involvement in the development of the Autism Toolbox website which launched in April 2014. MOIRA PARK From Guidance to Use: taking the Autism Toolbox, a resource for Scottish schools, onto the web Moira has been working for the past year on developing the Autism Toolbox website. Until then she was Depute Head in Scottish Autism s New Struan School in Alloa. She runs the organisation s Education Network Days which bring together staff from across Scotland to share their autism knowledge and practice. Moira joined Scottish Autism from East Renfrewshire where she was Depute Head with main responsibility of managing the autism resource within a primary school and an outreach team supporting pupils in mainstream schools.. She was seconded to HMIE task group which produced the report on Education of Pupils with ASD in Scotland (2006) and is currently a member of the subgroup with a focus on employment, as part of the Scottish Strategy for Autism. PROFESSOR TONY CHARMAN What next in Autism Research? Tony holds the Chair in Clinical Child Psycholgy at the Institute of Psychiatry, King s College London. His main research interest is the investigation of social cognitive development in children with autism and the clinical application of this work via screening, diagnostic, epidemiological, intervention, and at risk studies. Tony is a Chartered Clinical Psychologist and works in a specialist service for children with autism complex neurodevelopmental conditions at the South London and Maudsley NHS Foundation Trust. He has published more than 200 peer-reviewed papers and is the author of over 30 book chapters. DR ARLENE CASSIDY What next in Autism Research? Arlene Cassidy is a graduate of Queen s and Stirling Universities with a Master s Degree in Social Work. Previous development posts within Health & Social Care and Barnardos led to her current position as Chief Executive of Northern Ireland s Autism Charity (Autism NI). She was presented with the CO³ Voyager Leadership Award for Political Impact in 2010 and was nominated again in 2012. Her recent appointment by the Minister of Health & Social Services to Chair the NI Autism Research Advisory Committee of the NI Autism Strategy, established by the Autism Act (NI) 2011, reflects her longstanding commitment to evidence based practice and policy development based upon independently validated research and equality and rights principles.

08 Action on Autism Research in Scotland Improving Impact Seminar Series The AAR Seminar Series: Overview Aims As our third Action on Autism Research Seminar Series begins, we look forward to building further understandings about the strengths and gaps in autism research in Scotland and to taking action of the knowledge gained. The discussions at this third seminar will consider the aims of the series, the key points emerging from Seminar 2 and how our growing evidence base links to the Scottish Autism Strategy. We will ask participants to consider the various impacts of research and would like you to share your dissemination process so that we can gauge the outcomes of the series. Our aims are to - 1. Invite participation from a number of respected international researchers to learn from their work and to debate priorities for the development of new studies 2. Contribute to a process of mapping current research through involving Scottish autism researchers in presenting their work at a series of two-day seminars 3. Make a call for paper or poster proposals to populate the working days with contemporary Scottish research into autism 4. Enhance the relationship between research, policy and practices through knowledge exchange workshops 5. Consider the relationship between intervention and impact 6. Generate new research collaborations and proposals where gaps are identified 7. Establish an Action on Autism Research in Scotland Network (through Autism Network Scotland) 8. Make recommendations for a National Research Action Plan for Scotland 9. Commit to building closer relationship between the academic, health, social services and education communities and autism policy development in Scotland 10. Disseminate the findings of the series with the support of Scottish Government, Autism Network Scotland and Research Autism through their websites, newsletters, a conference, publications and consequent good practice events The third from the series of Action on Autism Research Seminars was held at the end of April 2014 at the University of Strathclyde and as it was the case with the previous two events, it sparked thoughtprovoking debates on future direction of autism research, policy and practice in Scotland. Gathered attendees heard Professor Gary Mesibov from the University of North Carolina reflecting on his mantras from over 40 years of experience of working in the field of autism. Dr Katie Maras from the University of Bath discussed the representation of autism in the criminal justice system. Dr David Simmons from the University of Glasgow talked about sensory problems in ASD and Dr Michael McCreadie from Studio III discussed the notion of wellbeing in service delivery as a means of meeting the holistic needs of people on the spectrum. Presentations from Scottish researchers including Dr James Richards from Heriot-Watt University, Dr Joe Long from Scottish Autism, Dr Anna Robinson and Dr Ewelina Rydzewska from the University of Strathclyde focused on a range of topics from employment to transitions for people with ASD. Delegates had a chance to reflect on the presentations by discussing implications for policy and practice of autism research in social sciences. Priorities such as recognising the potential of practitioners as researchers and involving them to conduct practice-based research were mentioned. The dearth of research investigating autism-related difficulties and support needs of people with more severe forms of autism and accompanying disabilities or conditions was also emphasised. Action on Autism Research in Scotland Conference This conference will build on the outcomes of the 4 two-day Action on Autism Research in Scotland seminars held to date. The Conference will take place 6th-8th November 2014 in Glasgow. We will be joined again by some of the seminar keynote speakers and plan to link the work of the seminars to recommendations for an Autism Research Strategy for Scotland. CALL FOR PAPERS We will be issuing a call for Abstracts for three strands of work: Research, Policy and Practice-implementation papers for the Action on Autism Research in Scotland Conference shortly. If you would like to be included on the mailing list please email caroline.marley@strath.ac.uk to note interest and we will include you in the call.

Seminar 4 09 SEMINAR SERIES ORGANISING TEAM ALAN SOMERVILLE Alan Somerville is Chief Executive of Scottish Autism, Scotland s national autism charity and co-funder of this seminar series. He is also a Trustee of the Autism Alliance UK and a member of the Scottish Government s External Reference Group developing and implementing the Scottish Strategy for Autism. DR ANDREW STANFIELD Dr Andrew Stanfield is the co-director of the Patrick Wild Centre for Research into Autism, Fragile X Syndrome and Intellectual Disabilities at the University of Edinburgh. Within the NHS, he is also an honorary consultant in intellectual disability psychiatry and a member of the SE Scotland autism diagnostic service. His research is focused around the biological and psychological mechanisms of autism and related conditions, with a particular focus on the translation of these findings into clinical practice. ANNA ROBINSON Anna Robinson is the Course Leader for the PgCert;PgDip;MEd in Autism at the University of Strathclyde. Prior to this she managed The Centre for Education and Training in Autism and the Autism Advisory Service for Scottish Autism. She has been a practising therapist for people with Asperger s Syndrome for over 17 years. Her research explores emotional processing and the mechanisms of change within group Emotion- Focused Therapy. DR EVELYN MCGREGOR Dr Evelyn McGregor is a member of academic staff in the School of Education at the University of Edinburgh, a developmental psychologist, and currently Director of Post-Graduate Studies. Evelyn and colleagues formed the Scottish Autism Research Group (SARG): an interdisciplinary group which has run several funded seminar series for academics, practitioners and the autism community in Scotland. Her interests include intervention to help people with autism learn about belief, narrative skills and interests in autism and job interview skills in autism. DR EWELINA RYDZEWSKA Dr Ewelina Rydzewska was appointed a Network Adviser for Autism Network Scotland in May 2012. Ewelina s main research interest is on the process of transition to adulthood for people with autism spectrum disorder (ASD). Ewelina s research is concerned with multidimensional reflections on adulthood and on the quality of life for people with disabilities. Ewelina is also interested in the impact of the available service provision on service users developmental trajectories and opportunities for social engagement. DR HELEN MARWICK Dr Helen Marwick is a Senior Lecturer at the University of Strathclyde. A developmental psychologist, she is currently involved in research on intersubjectivity and conceptual development within autism spectrum disorders. She developed the Joint-Play Intersubjectivity Assessment Method (JPIAM), Helen is a member of international research groups investigating neurodevelopmental disorders and social communication, and has published widely in this area. DR JACKIE RAVET Dr Jackie Ravet is currently a senior lecturer in the School of Education at the University of Aberdeen. She is also director of the Autism & Learning programme - a Masters pathway for postgraduate students. Jackie has a background in teaching pupils on the autism spectrum and also held the post of Autism Development Coordinator for Moray Council. She now lectures and researches in autism and inclusive practice. RICHARD MILLS Richard Mills is the National Autistic Society s Director of Research and Research Director of Research Autism, an independent UK research charity specifically concerned with research into interventions in autism and co-funders of the present seminar series. His other appointments include Autism Advisor to the States of Jersey CI and Research Fellow, Bond University, Brisbane, Australia; He is Editor of Autism the International Journal of Research and Practice.

10 Action on Autism Research in Scotland Educational Research, Interventions and Impact 9, 10 June 2014 Scottish Government recognises that autism is a national priority. Given the importance of this agenda, the development and creation of a new Scottish strategy for autism was vital to ensure progress across Scotland in delivering quality services to people with autism and their families. Scottish Government Autism Strategy funding was awarded to The Action on Autism Research Seminar Series as an initiative to reach out to the autism research community and to bridge research, policy and practice. Research Autism describes itself as the only UK charity exclusively dedicated to research into interventions in autism. We carry out high quality, independent research into new and existing health, education, social and other interventions. Our goal is the improvement of quality of life and outlook for people on the autism spectrum and those around them. They have generously supplemented the original Scottish Government grant to the series. http://researchautism.net/pages/welcome/home.ikml Scottish Autism describes itself as an organisation dedicated to enriching the lives of people with autism. We are the largest provider of autism-specific services in Scotland and a leading authority and advocate for good autism practice. We exist to help those diagnosed with autism to lead full and enriched lives and become valuable members of the community they live in. We also seek to share our knowledge and expertise with parents, carers and other professionals in order to support the development of skills and strategies needed to provide the best care and support for people with autism. They have generously supplemented the original Scottish Government grant to the series. http://www.scottishautism.org/

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The Universities of Aberdeen, Edinburgh and Strathclyde collaborated with the seminar series proposal to develop the seminar series. The Scottish Strategy for Autism http://www.autismstrategyscotland.org.uk/ You can follow the Autism Seminars online by joining Autism Network Scotland: www.autismnetworkscotland.org.uk @Autism_Network