No 5254 December 2010 English Edition Autism - Europe • Report on Autism-Europe • Tribute to Gilbert Huyberechts IX International Congress «A Future for Autism» • ACE Project - Autism Connections Europe Project • Exhibition : «Touches of Autism» Autismo Burgos • 2011 - European Year for Volunteering: SPOSA’s volunteers • European Days of Autism 2010 • The new EU Disability Strategy 2010-2020 • Projects for inclusion - Deis-Cyfle!: Ireland and Wales - Deis-Cyfle!: Ireland and Wales • Publications - Pilot Programmes in Greece Published by Autism-Europe Afgiftekantoor - Bureau de dépôt : Brussels - Ed. responsable : E Friedel For Diversity Autisme Europe aisbl Rue Montoyer, 39 • B - 1000 Brussels, Belgium Tel.:+32-2-675 75 05 - Fax:+32-2-675 72 70 Against Discrimination E-mail: [email protected] Website: www.autismeurope.org Edito inDEx ActivitiEs - Report on Autism-Europe IX International Congress ...................................... 3 - Touches of Autism - Exhibition ............................. 5 - European Days of Autism 2010 ............................ 8 tribute to Gilbert Huyberechts ................................. 9 ProjEcts For EmPloymEnt AnD EDucAtionAl intEGrAtion - Deis-Cyfle!: Ireland and Wales ............................. 12 - Pilot programmes in Greece ................................ 14 ProjEct Dear Friends, - ACE connections Europe .................................... 16 On behalf of the executive committee of Autism-Europe, we would like 2011 - European year of volunteering to wish you all the best to you and your families for 2011. - SPOSA and its cooperation with young European volunteers ........................... 18 Although 2010 has been a successful year for Autism Europe, we have all been deeply saddened by the deceases of Jacques Masson, one of the founders of the organization in 1983, and of Gilbert nEWs Huyberechts, president from 1989 to 2000, who died on December - The new EU Disability Strategy 2010-2020 ......... 20 13th in Luxembourg. PublicAtion Gilbert greatly contributed to raise awareness of Autism at the European level. He will be remembered - The right to health care and habilitation as a dear friend and was and will remain a true inspiration for those who defend the rights of people with for persons with autism ...................................... 20 complex dependency needs, and in particular with ASD. This Link issue is dedicated to Gilbert. mEmbErs list .................................................... 22 The duty of Autism-Europe is to pursue their commitment. In this respect, Autism Europe’s Congress “A Future for Autism”, held in Catania in October, provided 1200 participants with a comprehensive picture of the substantial gains in knowledge during the last three years and their implications for intervention. A wide range of topics was discussed: from genetic features and neuro-biological findings to social and cognitive development, from diagnosis and classification to intervention and policies. Published with the support of the Directorate-General for Employment, Since it is essential to disseminate and give everyone access to up-to-date and evidence-based information social affairs and equal opportunities of the European Commission on autism, we are delighted to announce that videos of presentations of the Congress are now available under the European Community Programme for Employment and Social for free on internet. Solidarity PROGRESS The end of the year was also marked by the official ratification of the UN Convention on the Rights of For Diversity Persons with Disabilities on 23 December by the European Union. There is a lot of work ahead for its Against Discrimination full implementation, but the institutions of the European Union will now have to endorse the values of the Convention in all policies under their competence ensuring mainstreaming of disability: from transport The information contained in this publication does not necessarily to employment and from information and communication technologies to development cooperation. It reflect the views or opinion of the European Commission. also means that they have to adjust the accessibility of their own buildings, their own employment and communications policy. Editorial Committee Evelyne Friedel Donata Vivanti Pagetti In 2011, Autism-Europe will work towards the implementation of the UN Convention, in cooperation with Michel Favre other organizations of the disability movement, in particular the European Disability Forum. Aurélie Baranger Layout : mmteam sprl - 02/262 16 50 - Frédéric Maigret We will continue representing persons with ASD and raise awareness about their specific needs in Printing : mmteam sprl - [email protected] partnership with the European institutions that have just adopted a Disability Strategy for the period Cover : Illustration of Merceron Perrine, Personimages 2010-2020. We would like to thank the European Commission for its support to help Autism-Europe Autism-Europe combat discrimination experienced by persons with ASD throughout Europe. Autism-Europe has been Rue Montoyer 39 • B-1000 Brussels • Belgium selected as a key EU Disability network to benefit from the PROGRESS programme for equality and anti- Tel.:+32-2-6757505 discrimination 2011-2013. Fax:+32-2-6757270 E-mail: [email protected] Website: www.autismeurope.org We would also like to thank all of you once again for your precious support and expertise that are key to Autism-Europe. Please continue sharing your experiences and good practices with us through these Account number : pages. You will also find in this issue the invitation to the Annual General Assembly to be held in Athens in Dexia Bank: IBAN: BE21 0682 0816 9303 / BIC: GKCCBEBB April 2011. Once again a happy new year to all of you! Reproduction of articles is permitted provided that AUTISM-EUROPE is acknowledged as the source, with the exception of articles with a © at Finally, 2011 is the European Year for Volunteering, and we would like to seize this opportunity to thank the end of the article. Articles and information for future issues of Link wholeheartedly all the volunteers across Europe who give their time and energy to support the cause and are welcome. They should we sent to the address above. advocate for autism. Link est aussi publié en français. Si vous souhaitez recevoir notre revue en français, veuillez en avertir notre secrétariat à l’adresse ci-dessus. Evelyne Friedel Aurélie Baranger President of Autism-Europe Director Activities IX International Congress AUTISM-EUROPE A FUTURE FOR AUTISM Catania, Italy 8 - 10 October 2010 The IX International Congress Some 1200 delegates, researchers, comprehensive picture of the substantial of Autism-Europe “A Future professionals, parents and self-advocates gains in knowledge during the last 3 years for Autism”, held in Catania, coming from everywhere in the world, and their implications for intervention. enjoyed this unique opportunity to discuss Italy, 8-10 October 2010 with the best known scientists in the field Progress in scientific knowledge has provided a unique opportunity of ASD their concerns and hopes for come particularly from a greater use for updating and sharing significant advances in terms of knowl- of experimental designs, the application knowledge on a wide range of edge, provisions and proper support to of eye-tracking methodology, the use of persons with ASD in the world . functional brain imaging, the ‘baby-sibling’ issues concerning Autism, from prospective studies. genetic features and neuro- 18 keynote speakers, 70 selected biological findings to social and speakers and 185 selected poster exhibi- Greater gains in the fields of prevention cognitive development, from tors and other relevant personalities in and intervention can be expected in the diagnosis and classification to the field of EU policies contributed to years ahead. A better Future for Autism, its success through the high quality and persons affected and their families is intervention and policies. variety of their presentations, providing a close. The following report, while not exhaus- tive, summarises the more relevant issues which have been presented at the Congress. GENETICS FINDING AND BRAIN DEVELOPMENT The “autism genome project” (AGP) on > 1000 patients with ASD, confirmed rare pathogenic gene mutations affecting molecules (neuroligins, neurexin and SHANK 3), which are involved in the synaptic cell adhesion, and detected new synaptic genes associated with ASD, suggesting that ASD could be the consequence of an alteration in the homeostasis of the Page 3 synaptic currents in specific regions of Abnormalities of the immune system in a Prospective longitudinal studies of very the brain. subset of mothers of children with autism large samples starting during pregnancy, In general, the genes that have been have been found. Circulating antibodies and including good biological measures, reported to be associated with ASD are anti-foetal brain cells have been found in are needed to test the environmental all involved in coding for neuronal organi- a proportion of mothers of children with factors exposures which are likely to zation and neuronal migration. Errors in autism. The inoculation of these human enhance the risk of developing ASD. The these genes are likely to be responsible antibodies in pregnant monkeys has been MARBLE study is one of such investigation. for the dysregulation of brain growth seen demonstrated to lead to a nonhuman in autism in the first few years of life. primate model