No 5258 December 2012 English edition Autism - Europe The challenges of an ageing population New dental health program in France Autism in emergency situations Fitting in at a mainstream school Autism-Europe International Congress 2013: Keynote speakers announced Published by Autism-Europe Afgiftekantoor - Bureau de dépôt : Brussels - Ed. responsable : Z Szilvásy For Diversity Autism Europe aisbl Rue Montoyer, 39 • B - 1000 Brussels, Belgium Tel.:+32-2-675 75 05 - Fax:+32-2-675 72 70 Against Discrimination Email: [email protected] Website: www.autismeurope.org SUMMARY ActivitiEs - The challenges of an ageing population ................. 3 - European strategies for autism ............................. 6 Dear friends, NEWs AND FEAtUREs In this issue, you will find a special feature about ageing and - New dental health program in France ................... 8 autism. As 2012 was the European Year for Active Ageing - Autism in emergency situations .......................... 12 and Solidarity between Generations, it was important to - Fitting in at a mainstream school ........................ 14 raise awareness of the fact that people with autism grow old too. To most of us it sounds obvious, however, as the iNtERNAtioNAl AUtism-EURopE coNgREss condition of autism is still a relatively recent discovery and - Keynote speakers announced & other news .........18 the number of diagnoses has grown exponentially over the past 30 years, the general public often tend to associate NEWs iN BRiEF .................................................... 20 autism with children and younger people. At Autism- Europe, we felt it was important to use this European Year NEW mEmBERs as an opportunity to highlight the challenges faced by - Latvian Autism Association ................................ 21 people with autism and their families as they grow older. We produced a report titled ‘Towards a better quality of list oF mEmBERs ............................................... 22 life – the rights of ageing people with autism’ and we will continue to work on the issues surrounding autism and ageing in the future. Becoming older also means celebrating birthdays! In 2013, Autism-Europe is looking forward to a double celebration: our 30th anniversary and our 10th international congress that will take place in Budapest, Hungary on collaborators September 24 to 26, 2013. We look forward to meeting old and new friends on this occasion! You can take a first glimpse at the congress programme by discovering Editorial committee : Zsuzsanna Szilvasy some of the confirmed keynote speakers on page 18. Evelyne Friedel Harald Neerland Maria Wroniszewska This issue of LINK also contains a lot more; for example, on page 14 you will Claude Schmit discover the story of a Flemish mother named Inge and her daughter Margot, who Aurélie Baranger share their experiences and tips on how a person with autism can be included more Editing, writing & coordination : effectively by their teachers and peers at school. Nikki Sullings Editorial Assistant : As many parents know, making life easier for people with autism requires every Miren Hurtado situation to be planned, but what about emergency situations? In some countries, translation : autism organisations have developed plans to prepare for, and deal with, the Dominique Theunis Marie Dubost unexpected (page 12). Magali Vlayen layout & printing : Other countries have adopted specific comprehensive national strategies for mmteam sprl - +32-2-262 16 50 - Frédéric Maigret autism that span various sectors (health, education, employment, housing) and Website : http://fredmmteam.wix.com/mmteam aim to support people with autism throughout their lifespans. Autism-Europe cover : was pleased to hold a seminar in cooperation with the Celtic Nations Autism Michael Baron (right) and his adult son Timothy (left) who has autism Partnership at the European Parliament in November in which the Celtic nations Autisme-Europe shared their experiences and expertise with their European counterparts and Rue Montoyer 39 • B-1000 Brussels • Belgium Tel.: +32-2-675 75 05 raised awareness among the Members of the European Parliament on the impor- Fax: +32-2-675 72 70 tance of these strategies (page 6). Email: [email protected] Website: www.autismeurope.org We hope that you will enjoy this edition of LINK, and please remember that these Account number : pages are here to highlight important news and good practices in the field of Belfius Bank : IBAN : BE21 0682 0816 9303 / BIC : GKCCBEBB autism, so do not hesitate to share your news and experiences with us! Reproduction of articles is permitted provided that AUTISM-EUROPE is acknowle- dged as the source, with the exception of articles with a © symbol at the end of the article. Articles and information for future issues of LINK are welcome. They Sincerely, should be sent to the address above. LINK est aussi publié en français. Si vous souhaitez recevoir notre revue en français, veuillez en avertir notre secrétariat à l’adresse ci-dessus. Zsuzsanna Szilvasy Aurélie Baranger President Director Published with the support of the Directorate-General Justice of the European Commission, under the European Community Programme for Employment and Social Solidarity, PROGRESS. For Diversity Against Discrimination The information contained in this publication does not necessarily reflect the views or opinion of the European Commission. Activities Facing the challenges Image: Michael Baron (left), 86 year-old father of Timothy (right), an of an ageing population adult with autism. the ageing population is a phenomenon that is challenging policy makers around the world. in Europe, the percentage of the population aged 65 years or over is expected to increase from 18 percent in 2010 to 30 percent by 2060. With around 1 in 150 people currently being diagnosed with an autism spectrum disorder, this means there is a large – and growing – number of ageing adults with autism whose needs have not yet been considered in most countries. A new report* by Autism-Europe ad- dresses the key challenges faced by ageing people with autism and their families, in the context of their rights and emerging best practices in the field from around Europe. Throughout the developed world, people are living longer and lack of support in better health conditions. Thus, the same general trend exists among people with autism (although their life expectancy remains Whether an individual has received a diagnosis or not, lack of somewhat shorter). While ageing people with autism have many support is widespread among adults with autism. In the United of the same needs as ageing neurotypical people, there are Kingdom, a survey conducted by the National Autistic Society some additional factors linked to autism that can increase their revealed that among adults who have received a diagnosis of health care needs such as gastrointestinal problems, insomnia, autism, 71 percent of respondents aged over 45 years have not epilepsy, autoimmune problems and side effects of medications. had their needs formally assessed, let alone met by any services. In addition, they also experience higher rates of depression and This lack of support can have dramatic consequences, leading people with autism to be at higher risk of poverty and more likely anxiety than the general population. to become homeless than the general population. Access to a diagnosis One of the foremost issues to consider in relation to adults with “There is currently no place in Brussels for supported housing autism is the fact that so many have never received a formal facilities. I visited 20 care homes, all of them are full. My son is diagnosis. Many individuals who were born prior to widespread very withdrawn, anxious and depressed. Who will support him knowledge of autism among the medical profession – or even when I’m gone?” prior to the original definitions of autism and Asperger syndrome – have not received a diagnosis or been in contact with specialists A Belgian mother who is sick and has been a widow for several years, at all. Yet, studies show that the prevalence rate of autism is likely worries about the future of her 36 year-old son who has autism and epilepsy. to be the same for adults as it is for children who are diagnosed with autism in Europe today – around 1 in 150 people. Without a diagnosis, or awareness of one’s condition, it can be impossible lack of appropriately trained staff to access appropriate services. In addition, some older individuals In the positive cases where older people with autism are in contact with autism have received incorrect diagnoses in the past and with relevant services, there is often a lack of appropriately trained continue to receive inappropriate treatments. staff that can address their needs. In addition, around Europe services for people with disabilities have been hit very hard by the ongoing financial crisis, with social services being forced to cut staff or even close down in some countries. “States Parties undertake to adopt immediate, effective and appropriate measures to combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life.” - United Nations Convention on the Rights of Persons with Disabilities, Article 8. b. Page 3 The National Autistic Society Autistic The National What will happen to people with autism when Rights and age-sensitive approaches their parents are too old to provide care? While people with autism clearly have