XI Autism-Europe International Congress 2016 in Edinburgh: Opening Ceremonies
Sofia Grech, acclaimed mezzo-soprano performed at the opening ceremony, introduced herself as being on the spectrum
The theme of this year’s three-day event was “Happy, Healthy and Empowered”. There were a lot of people! Four floors of conference rooms and exhibition spaces with people streaming up and down the escalators to get to their events. Excitement was in the air. The operatic performance by Sofia Grech during the opening ceremonies was stunning, setting the tone for the next few days. 1,700 attendees from over 60 countries came together to share the most recent developments in diagnosis, early intervention, assistive technology, education, support, employment and rights.
Close attention was paid to the improvement of physical and mental health outcomes for individuals on the spectrum. The conference was true to it’s theme of empowering autistic people to play more active roles in society and gain create greater control of their individual futures. There was a sense of purpose and excitement that was pervasive with every presentation.
Carol Povey, Director of the National Autistic Society and Zsuzsanna Szilvasy, president of Autism Europe, meet on stage.
The conference offered access to extraordinary research and an opportunity to meet a large number of people involved in improving the lives of those touched by autism. I chose to attend the following lectures whose themes were related to children, early intervention, assistive technologies, language acquisition and the economics of autism.
How to develop a digital game for screening for high functioning autism at kindergarten age: from evidence-based planning to the first results from evaluation.
Krisztina Stefanik, Ph.D. Autism-professional, psychologist.
Krisztina Stefanik, Ph.D. Autism-professional, psychologist. Recently she is the leader of the new ‘Education for Autism Spectrum’ specialisation at the Eötvös Loránd University Bárczi Gusztáv Faculty of Education for Special Needs, Budapest, Hungary
Dr. Stefanik presented a fascinating approach to screening for atypical socio-cognitive development. She provided an overview of the development and the results of initial usability testing for a system that uses game theory to help diagnose these conditions. Her conclusions were that her design process has proven to be productive and the prototype had the potential to be a successful environment for screening.
Getting in early: the critical importance of early intervention with children on the autism spectrum
Gina Davies: The Gina Davies Autism Centre
“The challenge (of early intervention) is to make it accessible, affordable, appealing and practical for all involved. “
The services available through the Gina Davies Autism Centre have been developed and formed over several years. Ms. Davies is a Speech and Language Therapist specializing in strategies for parents and professionals. She has worked with hundreds of children with autism in schools, nurseries and residential settings.
Gina has established parent groups, social skills groups, language and communication services. She has set up and run programs in specialist and mainstream schools, working closely within the educational framework.
Reflect, Reboot, Reimagine
Carol Gray: Founder, Team Social Stories™ and Social Stories Satellite
Carol Gray is an internationally respected author and speaker with 35 years of experience as a teacher and consultant working on behalf of children and adults with autism.
Social Stories were devised as a tool to help individuals on the autism spectrum better understand the nuances of interpersonal communication. Social stories are used to prepare individuals for social interaction and public events.
Comic strip conversations http://www.autism.org.uk/about/strategies/social-stories-comic-strips/comic-stsrip-conversations.aspx
A tool for person-technology matching in the area of mobile Apps for ASD
Luis Pérez de la Maza, Director at Fundación Aucavi – and Patricia Pérez-Fuster, M.Sc.
Luis Pérez de la Manza and Patricia Pérez-Fuster are developing an Assessment App that will help parents and caregivers find the most effective tools for their children with autism spectrum disorders when using tablets, smartphones and smartwatches.
“…it is very difficult for families and professionals… to find appropriate solutions. For a given individual it is not easy to assess what type of device is better; what device-protection systems should be considered; what type of software apps should be acquired and what any training needs for parents and teachers are.” – Patricia Pérez-Fuster
Luis and Patricia also run intervention programs in schools and day centers with applications for smartphones and tablets and augmented-reality based video games.
The Economic Case for Early Interventions for Autistic Children
Martin Knapp and Valentina Iemmi –Both from The London School of Economics and Political Science
Dr. Iemmi is a researcher in the areas of global mental health policy. Research Fellow at the Personal Social Services Research Unit at the London School of Economics and Political Science. Dr. Knapp is an economist and policy analyst related to health and social care. As well as being Director of the Personal Social Services Research Unit at the London School of Economics, he is Professor of Social Policy and Chair of LSE Health and Social Care.
I found the presentation very sobering, focused as it was on the lifetime economic costs of autism and that the cost is so high. The premise of their research is that autism spectrum disorders (ASD) are associated with higher education, health and social care costs. Also that there may be productivity losses due to disrupted employment for both individuals with ASD as well as their caregivers. Data was collected from 950 individuals with ASD and 787 caregivers.
The findings showed that for individuals with ASD, the cost of services was higher for autism than for high functioning autism. The highest cost categories were education for children and social care for adults. For caregivers of individuals with ASDs, the overall cost of services was higher for caregivers of children than caregivers of adults. Nearly all costs associated with caregivers were attributable to productivity loss.
How can focus group-based approaches to design help improve how technology meets the needs of children with autism?
Joseph Mintz Senior Lecturer in Education and Academic Head of Learning and Teaching in the Department of Learning and Leadership, UCL Institute of Education
Dr. Mintz ‘s presentation focused on the development methodologies surrounding AT applications. While app technology is encouraged by the autism community, it suffers from insufficient evidence based methodologies and end user feedback. Put another way, it is apparent that many apps suffer from poor overall design and a lack of input from members of the autistic community (Coppin 2012).
Solving this problem requires a significant investment early in the development process – something that can prove prohibitive for most commercial projects.
His solution is a user based design approach, in other words an iterative process combined with ongoing focus group testing.
Other important workshops and presentations
A ‘Birds of a Feather’: Group to discuss what new technology is needed to help autistic people and their families/carers in their day-to-day lives. A pre-school model of autism support; delivering early intervention to children, families and early years practitioners
Children’s preference for and use of three different Augmentative and Alternative Communication systems: http://programme.exordo.com/autismeurope2016/delegates/presentation/260/
Live Animotion Intervention (PLAI) for Young Children with Autism Spectrum Disorders: http://programme.exordo.com/autismeurope2016/delegates/presentation/343/
Making mobile devices and services more usable by and useful for people with autism and other cognitive and learning disabilities: http://programme.exordo.com/autismeurope2016/delegates/presentation/268/
Oral Posters: Using technology to communicate and empower: http://programme.exordo.com/autismeurope2016/delegates/session/57/
Jessica Kingsley Publishers: http://www.jkp.com/
The conference offered access to extraordinary research and an opportunity to meet a large number of people involved in improving the lives of those touched by autism and empowering them to play more active roles in society and gain control in determining their future.