ASD EU and EU AIMS research projects: results and future impact

Dr Manuel Posada, Prof Diana Schendel, Prof Tony Charman, Aurelie Baranger, Zsuzsanna Szilvasy

Dr Manuel Posada
Dr Manuel Posada is Director of the Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III, and leader of several rare diseases activities in Spain and autism. He is also the Director of both the National Biobank on Rare Diseases (ISCIII) and the National Rare Diseases Registry. He is also an independent expert of the Commission Expert Group of Rare Diseases (CEGRD), European Commission and also of the Advisory Board of the European Commission Platform Rare Diseases Registration. He is a member of the expert panel of ASD at the European level. In 2000, he created the Group of Experts Autism Spectrum Disorders in Spain (GETEA). Currently, he is leading the Autism Spectrum Disorders in the European Union – ASDEU project and co-leading some Spanish projects in ASD as well as some other autism European projects in the 2000s years.

Professor Diana Schendel
Diana Schendel is Professor of psychiatric epidemiology at the National Centre for Register-based Research and the Department of Public Health, Aarhus University and senior researcher in autism epidemiology in the Lundbeck Foundation Initiative for Integrative Psychiatric Research (iPSYCH; http://ipsych.au.dk/) in Denmark. She received her PhD in biological anthropology at the Pennsylvania State University and joined the Developmental Disabilities Branch at the Centers for Disease Control and Prevention (CDC) in the US in 1993. Her CDC work included scientific leadership for the largest, multi-site autism epidemiologic study in the USA, called the Study to Explore Early Development (SEED), and establishing the International Collaboration for Autism Registry Epidemiology (iCARE), the first multinational research consortium in autism epidemiology. Diana has focused for many years on disentangling autism trends and investigating risks for autism, including family history and pregnancy factors. She is now committed to understanding both the causes and consequences of autism, especially in adults. She is particularly interested in autistic adult issues in services and care, from transition during late adolescence through adult life.

Professor Tony Charman
Tony holds the Chair in Clinical Child Psychology at the Institute of Psychiatry, Psychology & Neuroscience, 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. He is a Chartered Clinical Psychologist and works in a specialist service for children with autism and complex neurodevelopmental conditions at the South London and Maudsley NHS Foundation Trust. He has published more than 250 peer-reviewed papers and over 30 book chapters. He has served on a number of expert panels for the Medical Research Council and NICE in the UK, NIH in the USA and the WHO.

Aurélie Baranger
Aurélie Baranger has been the Director of Autism-Europe (AE) since 2007. Her mission includes the overall coordination of the network of member associations, and the management of AE advocacy and policy work, liaising with EU decision-makers and other key stakeholders. She has worked on a wide-range of European projects and policy issues to promote a right-based and evidence-based approach to autism. Aurélie has conducted several European-wide surveys and co-authored European reports on good practices in the field of autism. She has also contributed to the organisation of Autism-Europe International congresses.

Aurélie has a Master in History and International Relations (University of Nantes), and a Master in European Public Management (Institut Supérieur du Management Public et Politique, Paris). Her previous experiences include working for the European Disability Forum on a capacity building project with disabled people’s umbrella organisations of the Western Balkans, and a project on mainstreaming disability policies in local public policies at the local and regional level. Prior to that, she also worked for DG Enterprise, European Commission and for the European Community of Consumer Co-operatives.

Zsuzsanna Szilvásy
In 1993, Zsuzsanna graduated as an architect from the Budapest University of Technology and Economics. She has two children; Márton was born in 1993 and Mihály in 1997.

Zsuzsanna's professional life in the field of autism started after receiving the diagnosis for her second child. First, she started studying at the University of Birmingham and working as a volunteer for the Hungarian Autistic Society (www.aosz.hu). At the national organisation, she was responsible for the international connections, and thanks to these experiences and the knowledge, she worked on launching family and school groups in Hungary, and later she was elected as the President of the Hungarian Autistic Society. During this time, the Society has conducted the one and only Countrywide Autistic Research, and based on international examples it started different educational, communicational and advocacy programs.

Zsuszanna has also coordinated several international projects in Hungary, one of the most recognised one was the 10th Autism-Europe International Congress (http://www.autismcongress2013.eu).

Thanks to her broad experience and knowledge in the field of autism, she has been invited to speak about the rights and goals of people with autism at national and international conferences, at the Geneva headquarter of WHO, and at the United Nations in New York.