Action on Autism Research in Scotland

Transcription

1 Action on Autism Research in Scotland Improving Impact Seminar Series Seminar 3 28, 29 April Lord Hope Building, University of Strathclyde Social Research, Interventions and Impact

2 02 Action on Autism Research in Scotland Improving Impact Seminar Series 28, 29 April Welcome We are delighted to welcome you to the Third 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. 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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4 04 Action on Autism Research in Scotland Improving Impact Seminar Series Lord Hope Building, University of Strathclyde PROGRAMME DAY 1 Monday 28th April Social Research, Interventions and Impact Opening remarks Professor Tommy MacKay Professor Gary Mesibov, University of North Carolina My Mantras: What I have learned in 40 Years Working with People with Autism Spectrum Disorders and their Families Discussion Seminar 1 2 x Scottish Researchers 10 minutes + 5 min questions. Chair: Professor Jean Maclellan 1. Dr Anna Robinson, University of Strathclyde Emotion-Focused Group Therapy: can it enhance emotional processing? 2. Dr James Richards, Heriot-Watt University The exclusion of employees with Asperger Syndrome from the Workplace: A critical perspective Tea and coffee break Dr Katie Maras, University of Bath Implications of autism for the criminal justice system Coffee Dr Mike McCreadie, Clinical Consultant, Studio 3 Stress and Autism: improving service delivery through better understanding of the stress transaction Discussion Summing up from speakers and chair Impact discussion focusing on the potential impact of what we have heard today by use and classification Lunch (posters + impact)

5 Seminar 3 05 SPEAKERS DAY 1 PROFESSOR GARY MESIBOV My Mantras: What I have learned in 40 Years Working with People with Autism Spectrum Disorders and their Families Having written my first paper on ASD in 1967 as an Undergraduate University student I have had a career spanning 45 years. My presentation will review a few of the most important lessons I have learned in that time and what these lessons say about what needs to be done today to better meet the needs of people with ASD. DR MIKE MCCREADIE Stress and Autism: improving service delivery through better understanding of the stress transaction Michael is one of the Consultant Clinical Directors of Studio III Clinical Services and is the Lead Scientist Practitioner on the ATLASS programme. As a Clinician Michael is involved in supporting people with Neuro- Developmental Conditions and Brain Injury, their families and services in the UK, Ireland and Scandinavia. Michael s doctoral work was in relation to stress relationships, health and well-being and this has informed the development of the ATLASS framework. Michael is currently involved in research with colleagues in the UK and Denmark in evaluating Mindfulness approaches for people with autism, their families and carers. VISITING PROFESSOR JEAN MACLELLAN Jean retired in September 2013 from her position as Divisional Head, Adult Care and Support Division, Scottish Government. The recommendation that she be appointed Visiting Professor in the Faculty of Humanities and Social Sciences, University of Strathclyde was approved by the promotions committee in January Jean had started out as a Social Worker, became a Principal Officer, a Lecturer at Edinburgh University, a Social Work Education Adviser, an Inspector and Acting Assistant Chief Inspector before moving to policy in Scottish Government where for two decades she has led on ground breaking policy and legislation in the field of learning disability: working full time she achieved her Masters in Social Research. In recognition of her achievements, Jean was made a Fellow of the Royal Society of the Arts in 2010 for her outstanding work in adult protection and was awarded an OBE in the Queen s Birthday Honours in her Jubilee Year of DR ANNA ROBINSON Emotion-Focused Group Therapy: can it enhance emotional processing? 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 JAMES RICHARDS The exclusion of employees with Asperger Syndrome from the Workplace: A critical perspective James Richards is a lecturer in Human Resource Management at Heriot-Watt University and an Academic Member of the Chartered Institute of Personnel and Development. James has published research in human resource management journals, edited book collections and consultancy based reports. James doctoral research interests are grounded in industrial sociology and employment relations and became interested in Asperger syndrome when his son was diagnosed with Asperger syndrome about seven years ago. In more recent times this has led to James building on previous research by researching the management of hidden disabilities, such as, Asperger syndrome, dyslexia, ADD/ADHD, depression and anxiety in the workplace. DR KATIE MARAS Implications of autism for the criminal justice system Katie completed a PhD at City University London in 2011, with a focus on how the unique profile of memory strengths and weaknesses of people with autism affect their ability to recall an eyewitness event under different witnessing and interviewing conditions. Katie was subsequently awarded a one-year Postdoctoral Fellowship grant by the Economic and Social Research Council to extend this work, which she carried out at Royal Holloway, University of London. Katie is now a Prize Fellow at the University of Bath, where much of her current research continues along the theme of autism and the Criminal Justice System (CJS). Among other things she is exploring how effective police interviewing techniques are for people with autism and how credible they are perceived to be by others. She is also examining the abilities of people with autism to engage in deception and how their fare under investigative interview techniques designed to detect deception, as well as people s experiences of autism within the CJS. More recently, Katie has extended this focus to how the socio-cognitive profile of individuals with autism can be supported in applied contexts more broadly; for example, she is currently testing a personal computer-based system to support metacognitive aspects of mathematics learning for pupils with autism. Katie is part of a team that currently holds a Public Engagement Grant from the British Psychological Society for an Autism and the CJS network ( The overarching aim of this project is to increase national level awareness of autism via a three-way knowledge exchange between internationally renowned academics, CJS national level portfolio leads and leading charities to assist in the building of CJS capability to optimise its future engagement with people who are vulnerable due to autism (

6 06 Action on Autism Research in Scotland Improving Impact Seminar Series Lord Hope Building, University of Strathclyde PROGRAMME DAY 2 Tuesday 29th April Arrivals Professor Helen McConachie, Institute of Health and Society, Newcastle University Understanding and overcoming anxiety in ASD Opening remarks Professor Tommy MacKay Break Dr David Simmons, University of Glasgow Impact Seminar Round Tables chaired by members of the Organising Team Break Seminar 1 3 x Scottish Researchers 10 minutes + 5 min questions. Chair: Mrs Charlene Tait 1. Dr Joe Long, Scottish Autism The Value of Practice-Based Evidence: Practitioner Research at Scottish Autism Chair and Key Speakers Plenary Pulling everything together on the Seminar theme of Social Research, Interventions and Impact. Summing up from speakers and chair Departures 2. Dr Ewelina Rydewska, University of Strathclyde Milestones or Simply Next Steps? Perceptions of Transition to Adulthood for People with Autism Spectrum Disorders 3. TBC Lunch (posters + impact)

7 Seminar 3 07 SPEAKERS DAY 2 DR DAVID SIMMONS Understanding the social nature of autism: From clinical research to intervention David R. Simmons, D.Phil. (Oxon), B.Sc. (Hons), A.R.C.S. Currently a lecturer in psychology in the School of Psychology at the University of Glasgow, David has spent most of his academic career researching visual perception since graduating with a degree in Physics from Imperial College, London. His early work (University of Oxford) was on 3-D vision. He subsequently worked on visual texture and curvature perception (at Keele University) and then the combination of colour and 3-D vision (at McGill University in Montreal). Since returning to the UK from Canada in 1995, his research interests have broadened considerably to include visual aesthetics (especially the link between colour and emotion), visual appearance (in particular how best to characterize post-surgical facial scarring), synaesthesia and, his current main focus, perception in Autism Spectrum Disorders. This latter interest has resulted in work on sub-group committees of the Scottish Government s Scottish Strategy for Autism and he is now a member of the editorial boards of the journals Perception/i-Perception and The Journal of Autism and Developmental Disorders. DR JOE LONG The Value of Practice-Based Evidence: Practitioner Research at Scottish Autism Dr Joseph Long is Researcher in Residence at Scottish Autism and Honorary Research Fellow at the University of Aberdeen. At Scottish Autism he leads a programme of practitioner research as well as managing collaboration with research partners. The role draws on his experience as a practitioner and manager in autism and learning disability support services as well as his academic background in social anthropology. Joe was previously Research Fellow at the Max Planck Institute for Social Anthropology in Halle, Germany and he has taught at the universities of Aberdeen, Tübingen and Halle- Wittenburg. DR EWELINA RYDEWSKA Milestones or Simply Next Steps? Perceptions of Transition to Adulthood for People with Autism Spectrum Disorders Dr Ewelina Rydzewska was appointed a Network Adviser for Autism Network Scotland in May 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. PROFESSOR HELEN MCCONACHIE Understanding and overcoming anxiety in ASD Professor Helen McConachie has worked for 38 years in multidisciplinary child health and mental health teams, including the Neurodisability Service at Great Ormond Street Hospital, London, and the Regional ASD Service for North East England. She conducts evaluation research on therapy approaches for children with ASD. These have included training for parents of young children with autism in promoting their child s social-communication development, and adapted group cognitive behaviour therapy for school-age children with ASD and high anxiety. She also leads a number of studies on the appropriate measurement of outcomes for children with disability.

8 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 In Seminar 2 we heard from 6 Scottish based researchers and welcomed the following speakers: Professor Helen Tager-Flusberg, Developmental Science Program Director, Boston University Investigating early behavioral and neurobiological markers of risk for autism spectrum disorder Professor Declan Murphy, Mortimer D Sackler Professor of Translational Neurodevelopment, and Director of the Sackler Institute for Translational Neurodevelopment, Institute of Psychiatry, King s College London. Translational neuroscience will help improve outcomes in autism. True or a delusional belief? Professor Fred R Volkmar, M.D., Irving B. Harris Professor Director - Child Study Center, Yale University School of Medicine Chief of Child Psychiatry Yale New Haven Hospital. Understanding the social nature of autism : From clinical research to intervention Professor Christopher Gillberg, Chair Mental Health and Wellbeing, University of Glasgow; Head of the Gillberg Neuropsychiatry Centre, Sahlgrenska Academy, Gothenburg University: Autism Plus vs Pure Autism In our February discussions we considered the nature of autism itself, different presentations of autism, diagnosis and waiting times, what is known about efficacy of services and whether we know enough to inform the 5 year ASD Strategy goals; One further Seminar will take place as follows Educational Research, Interventions and Impact 9th & 10th June 2014 The closing Action on Autism Research in Scotland Conference will take place 6th-8th November 2014 in Glasgow. Invited speakers for our final seminar event include - Tony Attwood, Brisbane, Australia; Dame Stephanie Shirley, The Shirley Foundation; Dr Justin Williams, University of Aberdeen; Professor Tony Charman, King s College, London; Professor Sue Leekam, University of Cardiff; Professor Tommy MacKay, Psychology Consultancy Services. NOTES OF INTEREST - If you or colleagues are conducting research on autism in the UK and would be interested in presenting research at one of the events, we would like to hear from you. Please caroline.marley@strath.ac.uk to note interest, indicating your topic, whether you would prefer to present a talk or poster, and which of the seminars would be a best fit for the presentation proposed. We will then send you guidelines on submission of a summary for consideration by the review panel.

9 Seminar 3 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 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 10 Action on Autism Research in Scotland Improving Impact Seminar Series 28, 29 April 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. 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.

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12 The Universities of Aberdeen, Edinburgh and Strathclyde collaborated with the seminar series proposal to develop the seminar series. The Scottish Strategy for Autism You can follow the Autism Seminars online by joining Autism Network Scotland: