N r 5252 December 2009 English Edition

Autism - Europe

Activities • European Days of Autism 2009 • Latest political developments in Europe • Invitation - General Assembly 2010 in Kassel

Special feature on ageing

Project • ACE Project - Autism Connections Europe

IX International Congress Autism Europe - Catania • Presentation of the Keynote speakers • Participate in the Exhibition « Touches of Autism »

Members’ Activities • Autismus Deutschland

News • Report on Casein-free diets • Specialisterne • Conference at the Pasteur Institute • ARAPI

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 European Days of Autism 2009...... 3 Latest political developments in Europe...... 5

Special feature on ageing ...... 6 Recommendation of the Council of Europe...... 7 Sesame‘s Village...... 9

Dear Friends, Project ACE Project- Autism Connections Europe...... 11 On behalf of Autism-Europe’s executive committee and secretariat, receive our best wishes for a Happy IX International Congress New Year! Autism Europe – Catania Presentation of the Keynote speakers ...... 12 2010 is the European Year against poverty and for Participate in the Exhibition « Touches of Autism » ... 14 social inclusion. Persons with disabilities and their Invitation – General Assembly 2010 in Kassel ...... 15 families are very often the first ones to be affected by an economic downtown. But, we also know that Members’ Activities persons with autism suffer from exclusion even in Autismus Deutschland ...... 16 better times because they are denied access to education, adapted care and services in the commu- News nity. Report on Casein-free diets ...... 18 Specialisterne ...... 19 Raising their voice is our mission and we will pursue Conference at the Pasteur Institute...... 20 this objective in 2010 and continue to defend the rights of persons with Autism ARAPI...... 21 at the European level. The European Commission is currently preparing a new EU Disability Strategy for 2010 to 2020. The latter will shape the disability policies List of members...... 22 of the European Union for the next decade and Autism-Europe will be active raising awareness of the specific needs of persons with Autism. This is all the more important that on 26 November 2009, the Council of the European Union decided on the European Community becoming a party to the UN Convention on the Rights of Persons with Disabilities (UNCRPD). As you may know, the UNCRPD binds the States Parties to a revision of all existing legislation, policies and programs to ensure they are in compliance with its provisions. Published with the support of the Directorate-General for Employment, social affairs and equal opportunities of the European Commission As for national initiatives, some political developments in various EU Member under the European Community Programme for Employment and Social Solidarity PROGRESS States in favour of persons with autism are presented in this issue. Positive evolutions have happened across the EU in the field of social inclusion, education, For Diversity etc. We hope that their implementation will go smoothly in 2010 and we will be glad to continue sharing good practices from across Europe! Against Discrimination

The information contained in this publication does not necessarily Several major events are planned by Autism-Europe in 2010. The Annual reflect the views or opinion of the European Commission.

General Assembly will take place in Kassel (Germany) at the beginning of June Editorial Committee and you are all warmly invited to attend this event that will be co-hosted by AE Evelyne Friedel Donata Vivanti Pagetti and Autismus Deutschland. In October 2010, the IX Autism-Europe Congress Michel Favre will take place in Catania, Italy. The Congress entitled “A Future for Autism” will Aurélie Baranger build on the most recent advances in scientific knowledge and contemporary Layout : mmteam sprl - 02/262 16 50 - Frédéric Maigret approaches to disability in order to investigate the best possible future for Printing : mmteam sprl - [email protected] persons with ASD and their families. You can already register for this landmark Cover : IX International Congress Autism Europe event! At this occasion, we will also celebrate the 2010 European Days of Autism-Europe Rue Montoyer 39 • B-1000 Brussels • Belgium Autism. Tel.:+32-2-6757505 Fax:+32-2-6757270 E-mail: [email protected] We look forward to pursuing our actions in cooperation with you in 2010. Website: www.autismeurope.org Autism-Europe thanks you for your involvement and support! Account number : Dexia Bank: IBAN: BE21 0682 0816 9303 / BIC: GKCCBEBB

Reproduction of articles is permitted provided that AUTISM-EUROPE is acknowledged as the source, with the exception of articles with a © at the end of the article. Articles and information for future issues of Link are welcome. They should we sent to the address above.

Evelyne Friedel Aurélie Baranger Link est aussi publié en français. Si vous souhaitez recevoir notre revue President Autism-Europe Director en français, veuillez en avertir notre secrétariat à l’adresse ci-dessus. Activities

From left to right

Guillermo de Rueda – Executive Manager Fundación Solidaridad Carrefour,

Evelyne Friedel – AE President,

Elena Sánchez Gallar – Councilwoman President Hortaleza’s District,

Francisco Moza – General Secretary, Ministry of Health,

Isabel Bayonas – FESPAU President,

Antonio de la Iglesia – CAE President,

Alberto Durán – General Director Fundación ONCE.

European Days of first European Country to ratify the Jim Mansell from the Tizard Institute E Autism - 3 and 4 UN Convention on 3 December (University of Kent) then gave a October 2009 - Madrid 2007. She called on Spain to be a presentation about Community- driving force to promote the rights based services and the way to of persons with disabilities during include people with the most complex High level conference the Spanish Presidency of the EU, needs. He stressed the benefits of starting in January 2010. During active support to involve people in On 3 and 4 October 2009, Autism- the opening session, Francisco meaningful activities and improve Europe celebrated the European Moza Zapatero, from the General their lives. Days of Autism in Madrid in coopera- Secretariat for Social Policy and tion with the Spanish Consortium Consumers, emphasized the commit- Active support users’ involvement for Autism, comprised of Autismo ment of the Spanish government to and quality of services are closely España and Fespau. foster the rights and inclusion of linked. Ramon Barinaga presented persons with disabilities, even in time the way Gautena (Spain) respond to On October 3rd, an international of crisis. the challenge of quality management. conference gathered more than 200 Finally, Lydia Daniels, Director of participants. During the opening Then, Joaquin Fuentes presented Autism Accreditation at the National session, Evelyne Friedel stressed to participants Autism-Europe’s Autistic Society presented the the necessity to fight for the rights document: Persons with Autism mission and core standards of the of persons with ASD, notably by Spectrum Disorders: Identification, Autism Accreditation that has devel- enforcing the UN Convention on Understanding, Intervention that he oped a framework to measure and the rights of people with disabilities. drafted with other European experts: evaluate best practices At this occasion, she highlighted Catherine Barthélémy, Patricia through self audit of its the fact that Spain had been the Howlin and Rutger van der Gaag. members.

Page 3 Autism-Europe’s Council of Administration

Autism-Europe’s The Council of Administration is very take place on 5 and 6 June in Kassel Extraordinary General pleased to welcome Miroslava on Germany. On 4 June, participants board since she has been active will have the possibility to take part Assembly and Council of for many years in Autism-Europe in a visit organized by Autismus Administration and involved as a partner in several Deutschland. projects with AE. After the conference, Autism- For more information, Europe’s members gathered for Autism-Europe would like to thank both please contact Autism-Europe: an Extraordinary General Assembly Presidents of Fespau and Autismo [email protected] (EGA). During the meeting, amend- España: Isabel Bayonas and Antonio ments to AE statutes were voted de la Iglesia Soriano and their team in order to ensure a better repre- for their invitation and cooperation to sentativeness of EU countries within organize these events and celebration the Council of Administration. AE of the European Day of Autism 2009. members also voted in favour of The next Annual General Assembly welcoming a new affiliated member and Council of Administration will association from Hungary, the “Foundation for children with Special disability”.

The EGA was followed by a Council of Administration (CA) meeting on Saturday afternoon and Sunday. The CA discussed the implementation of Autism-Europe’s activities. They also had the opportunity to share information about important develop- ments for persons with ASD in their countries. These developments have also been highlighted in the press release disseminated at the occasion of the European Days of Autism (please see below).

During the meeting a new CA member was coopted: Miroslava Jelinkova from Autistik in Czech Republic.

Gala Diner of the European Days of Autism Autism - Europe

Page 4 European Days of Autism: Putting Autism on the EU member States’ political agenda

Autism-Europe’s Council of Administration t the occasion of the European Days In France, the first anniversary of the French Plan for A of Autism, Autism-Europe released a Autism 2008- 2010 was celebrated in May 2009. This plan with a budget of 187 million Euros aims at increasing statement welcoming the latest policy devel- availability of adapted educational settings for children opments meant to improve the quality of life with ASD while promoting innovative methods of care for and respect of the rights of persons with them. The emphasis is also laid on improving diagnosis. autism in several EU member states. In Italy and Spain, governments have adopted guidelines on Autism in close cooperation with the stakeholders In Hungary, a 5-years Strategy for Autism has been including associations of families of persons with ASD. commissioned by the Ministry of Social Affairs and Labour Nevertheless efforts should be made for their enforce- and drafted by experts as a recommendation under the ment at regional and local level. supervision of the Hungarian Autistic Society (HAS). The Strategy aims at improving care for persons with ASD In Portugal, an important law (3/2008 published on notably by developing specific services for persons with 7 January 2008) on Inclusive Education reinforces the ASD, improving diagnosis, as well as access to education previous law and provides that every child must go to (including training for adults). One of the objectives is also public school. Article 25 is devoted especially to the to train staff to care for persons with ASD and to provide education of children with autism and creates Unities support for families. Another target is to develop employ- of Structured Teaching where they can receive special ment opportunities for persons with ASD. The Hungarian support so they are able to follow the regular classes in government has recently released a governmental decree their schools. In 2009, 1080 children with autism (5 to for its implementation. HAS would first like to develop an 14 years old) are included in Portuguese public schools in autism specific quality management system. about 180 units.

In the UK, a Private Members Bill, drafted by The National Meanwhile, in Greece, following a law adopted in 2008, Autistic Society (NAS) and taken forward by Conservative children with Autism are recognized for the first time MP Cheryl Gillan has made it through its final parliamen- as requiring, like children with other disabilities, special tary stage and will now become the Autism Act. The Bill education by specialized teachers in mainstream schools. was backed by a coalition of 16 autism organisations and However, the Ministry of Education has repeatedly failed had overwhelming parliamentary support, being backed to implement this law, by providing partial, delayed or by all the main political parties. The Act is the first ever inadequate special educational support, on the grounds disability-specific law in England. The Autism Act will of lack of funds or adequately trained teachers. In guarantee the introduction of the first-ever adult autism June 2009, after numerous parents’ complaints, the strategy, which will set out how local services should be Independent Authority of “Citizens Advocate” has issued a improved to meet the needs of adults with autism. The Statement recognizing the violation of the law by the State strategy will cover a range of issues including health, and proposing specific measures to ensure its application. social care, employment and training and, crucially, will be accompanied by guidance which places a legal obligation Aurélie Baranger on local authorities and NHS bodies to meet certain requirements. The strategy will be published by April 2010 and the accompanying legal guidance no later than December 2010.

Page 5 Special studies on ageing people

« What About Old Age? »

disabled for different reasons than with autistic spectrum conditions those resulting from ageing” (ASC). The diminishing resources in the social and health care sectors (Autism-Europe: Autism and Ageing, necessary to meet these growing Position Paper, Brussels, 2006). ,and what appears to be , unpredict- “We cannot wait for the able needs dominated this first meeting of some 60 participants answers before we take action. with a particular focus on cognitive We need to do something now” and neurological ageing in ASC. (NAS: Autism and Ageing, Communication, November 2008) So soon, after the meeting, it has not proved possible to summarise “Information must be shared usefully all the interventions and globally; research prioritised... provide a comprehensive report. The Institute for Ageing and Moreover, for internal reasons at Health would be an excellent the UK Government’s Welsh Office, place to bring together the disci- the long awaited survey findings plines this cause calls for” and recommendations in Wales on ASC and ageing have not yet been (NAS: “We worry for them: reflections of published. We expect to report on the “We are all getting older. The a parent”, Communication, March 2009). effects are physical and social” survey results and on the meeting in another issue of ‘Link’. But since the (NAS: Autism and Ageing- A policy And it happened, even if thirteen Welsh survey is the first of its kind Framework- London, 1996) years after the NAS’ 1996 truism. known to us, it will give some reality The first national - perhaps global to the more - so far - theoretical “The rights of ageing people - meeting “What About Old Age” at issues that occupied the attention with autism” Newcastle University organised by of the meeting. Yet in the words of (Autism-Europe: Position Paper, the Institute for Ageing and Health, Prof. Ian Stuart-Hamilton who led April 2003) sponsored and supported by the the survey: “the problems faced NAS, Autism Speaks, Wakehurst by our participants were chronic «The desire to provide Trust, Autism-Europe, MENCAP and and serious… potentially life-threat- appropriate services to AGE, took place on 29th October ening… the simple presence of ASD elderly people with autism is 2009 . It was opened by parent, symptoms, rather than its depth consistent with the history campaigner and NAS Councillor, was the key issue...” His findings, Mrs. Virginia Bovell. based on a small number able to of the NAS in seeking to find complete a questionnaire indicated imaginative and practical If ageing in people with autism was “much more serious problems, in responses to problems... a future issue in 1996, in autumn the groups that have not assisted outline the way forward which of 2009, it became a present one. in this study”. The sample was not will inform future planning” The demographics of ageing process demographically representative; so (NAS Working Party report 2005) have substantially changed over the that, important for Autism-Europe last few decades, and it is currently and its members, Prof. Stuart- “Few (conferences) have estimated that by 2026 in the UK Hamilton “would welcome the approached the problem of ageing alone, another 1.7 million adults prospect of carrying out collabora- persons who also happen to be will need some type of care. At tive research”. We have given space least, 17,000 of them will be adults to the Welsh survey, conducted by Autism - Europe

Page 6 Glamorgan University since this was Prof. le Couteur (Newcastle) explored generation to have been diagnosed the only call for collaboration. Prof. lessons learned from interventions in with an ASC… So we are actively Stuart-Hamilton may be contacted at: children and young people, Dr. James considering the formation of an inter- [email protected]. and Mrs MacKenzie (Northumberland organisational group to build on the Mental Health Service) related a case enthusiasm and commitment of those This is not to minimise or sideline the history of Aspergers in a care setting. who took part on October 29th; and depth and range of other contributions. This session concluded with contribu- one name suggested so far is IAGFA- On policies including services and strat- tions from four neuroscientists, Prof. International Autism Group For Ageing. egies, Prof. Cottinelli Telmo (Autism- Esiri (Oxford), Prof.Perry, Drs. Parr In our next report we hope to indicate Europe), Ms Elaine Hill (UK Govt Dept and Mukaetova-Ladinska (Newcastle how our “What about old age” should of Health), Dr. de la Cuesta (NAS), University). This intensive day closed move forward. Dr. Fitzpatrick (parent and general with workshops - discussion and practitioner) and Prof. Stuart-Hamilton, conclusions- on meeting the needs of European organisations that wish to were followed by a session on clinical the elderly with ASC, Mr. Mills and be kept informed should e-mail their and psychological research with Prof. Ms Povey (NAS Director of Research, interest, with name and address to: Holland (Cambridge) - memory and and Head of Adult Services); and on learning disability, Prof. Bowler (London) research needs (Profs. Perry and Esiri, Alyson Goldwater : - behaviour and ASC, Prof. O’Brien and Dr Mukaetova-Ladinska). [email protected] (Northumberland) - offending behav- Prof Elaine Perry, iour, Prof. Starr (Edinburgh) - physical For the immediate future, it is vital Dr.Elizabeta Mukaetova-Ladinska, health, and Prof. Regnard (St Oswalds not to lose momentum, and the wide Michael Baron. Hospice) on how to identify distress interest being generated across in severe /non-communicating adults “autistic communities” in these December 2009 .The afternoon session was devoted complex and demanding needs that to clinical and scientific research. are closing in on the first European

ecommendation of ageing people with disabilities ; enhancing the quality R of the Council of of services and ensuring equal access to those services. Europe on ageing and The Council of Europe indicates that ageing of people with st disability in the 21 disabilities, particularly of those requiring more intensive century support, compels Member States to adopt innovative approaches. In this regard, the Council of Europe notes that “the quantity and quality of community-based and residential support services in this field have been unsatisfactory, On 8 July 2009 the European Council’s Committee of especially for people with learning disabilities. Older people Ministers addressed a recommendation on ageing and with disabilities have suffered a double disadvantage, as seen persons with disabilities to Member States. in their relatively low priority in health- and social-care policies and provision.” Beforehand it should be underlined that this recommendation makes a clear distinction between “ageing people with disabili- With due regard for their own national, regional or local ties” and “older people with disabilities”. The first group refers structures and respective responsibilities, the Council of to people who grow old having experienced a disability for much Europe member states should contribute to the creation of of their lives, sometimes from birth. For the second group, sustainable frameworks to enable greater quality of life in an disability is first experienced at a relatively advanced age. inclusive society for ageing people with disabilities. The broad outlines of the Council of Europe new recommen- dation aim at promoting autonomy and an independent life

Page 7 T

The Council of Europe particularly recommends the 5• Relatives that support a person with disabilities at following: home should receive material and other assistance. Regular periods of respite care should be available to 1• Living arrangements (at home, in supported accom- provide family carers with a break from their responsi- modation or in residential placement) should take account bilities. This helps to ensure that home-based supported of the individuals wishes and needs. Individuals’ personal living can continue for as long as possible. potential and capabilities should always be included in holistic assessments of their needs and support requirements. 6• Eventually, services should be adequately financed as a necessary, if not sufficient, condition for them to be of 2• The principle of life-long learning should be applied, satisfactory quality. Those responsible for funding should regardless of the age and abilities of individuals.Preparation look to a variety of sources of financing, such as govern- for life changes should be included in programmes for ment funding, national and international NGOs, lotteries, ageing people with disabilities contributions from business and contributions by service users themselves. 3• Ageing people with disabilities and older people with disabilities should be fully and directly involved throughout 7• However, any charges to service users should be at the process of designing, implementing and evaluating an affordable level. services. Families, care providers and friends should also be involved in these processes, as appropriate. So far as possible, services should be provided in a person’s home Evelyne Friedel or community environment, rather than in a residential institution, and as close to a person’s home as possible. Bibliography 4• The staff of support services should recognise both in Report of the Council of Europe entitled: “Enhancing rights their training and in carrying out their professional duties, and inclusion of ageing people with disabilities and older the rights of those concerned to personal autonomy people with disabilities: a European perspective”, 2009, and choice over types, location, timing and pace of the free – is available on the Council of Europe’s website services to be provided, when assistance with living is required. When care providers (family members, paid http://www.coe.int/t/e/social_cohesion/soc-sp/ personal assistants) are involved, appropriate training, PDF%20Ageing%20ID%208310%20Couv%20 information and support should be provided by public handicap%20perspective%20europeenne_ID588%20 authorities or NGOs. couvA5%20du%20patient%20au%20%20GB.pdf Autism - Europe

Page 8 esame’s Village: a specific lifelong S project for ageing persons with autism

In July 2009, 19 persons with autism aged over 40 globally conceived for young adults which is based on moved into “Sesame’s Village” in Saint-Sorlin in the Rhone work-like activities and implies a dynamic pace of life region of France. This facility, which has been specifically such as any average active person might have (to get conceived for ageing persons, will be set up permanently up early in the morning, be punctual and attentive during in Messimy (Rhone) in 2010. It will include 32 beds for workshops, follow the pace of the group, etc). permanent residents and 4 additional beds for temporary Even though each resident’s personal project offers them care. individualized care, the physical condition of ageing adults no longer allows them to live with younger residents. Like other disabled people, persons with autism can expect to enjoy a longer life span than in the past. Adults We must anticipate any urgencies due to the deteriora- with autism or PDD, currently aged 40+ did not benefit tion of a person’s health from adapted care for their specific needs during their childhood or adolescence and most of them were not Some adults now aged between 40 and 50 have already helped to develop their skills. The degree of their depend- spend 20 years of their lives in the same institution, the ency and the loss or ageing of their parents force them same facility and in the company of the same residents. to live in institutions. They have their “habits”. It is only possible for them to change their place of residence and get used to a new What kind of support should they enjoy in order to live human environment without triggering too much anguish the rest of their lives in the best possible conditions, if the changes have been well prepared and if the person which, at the same time, take into account their individual still has the capacity to adapt. dependency needs? Disabled from birth, persons with autism have always The possible worsening of their health and greater needed specific, personalised support. When they grow dependency needs could lead to a hurried and very desta- old, their disability changes and aged-related disorders bilizing “move” but when they join this new facility they will are added to autism-related disorders. find a pace of life that takes their growing difficulties into account and a medical staff able to take care of them Mainstream institutions for elderly people who have even when their health deteriorates. No upper age limit become dependent do not meet the necessary support is foreseen and they can remain here for the rest of their conditions for persons with autism who have to cope with lives, with the only exception of particular cases that go both disabilities: ageing and autism. beyond the limits of the facility’s possible support.

In France, a law of 2005 foresees that people living in The familial environment of the person will encounter nursing homes should be able to remain in the same unavoidable changes facility when they are over 60 years of age. The familial environment of persons aged 40+ is often The Sésame Autisme Rhône-Alpes Parents Association reduced to that of siblings due to the old age or the loss founded the first residential care facility specifically for of one or both parents. Most residents can no longer adults with autism in the Rhone Region in 1987. We had return to their families. Sesame’s Village is a place where to consider a suitable setting for ageing adults either by residents’ relatives can spend a day with them, share a creating an internal “section” in the actual facility or by meal with them in the living rooms specifically conceived building a new unit devoted to ageing residents where for that purpose or go for a walk in the village (this is not they could stay for the rest of their lives. We chose the automatically foreseen in other current institutions), etc. second option. “Sesame’s Village”: a place conceived in line with the On the basis of our experience in support care for adults Association’s philosophy with autism living in institutions for more than 20 years, we have observed the following: This setting will favour as harmonious a life as possible for the person in relation to him/herself and others. We need a life project adapted to the ageing person Care for the person will concentrate in three areas: The ageing adult’s predisposition to fatigue and medica- tions that accentuate the effects of ageing means they A therapeutic function provided by a multi- are no longer compatible with any residential project disciplinary team in close liaison with hospital sector services for the medical check-ups of

Page 9 adult residents. All body-care, which old age may make A road will pass through this enclosed village with gates necessary, will be provided by specialized practitioners. at each end which will be opened to the public on special occasions (markets, celebrations, cultural exhibitions, A support and motivational function for activities meant etc.). to maintain acquired skills, favour fulfilment and well- being, and preserve the person’s capacities and cultural The three features of care in Sesame’s Village: openness. 1• The unit will be open permanently: this will be each A social function: the unit will network with the three adult’s main place of residence existing units of the Bellecombe Home (day care centre, nursing home, residential care home) and with nearby 2• Visits and stays with residents’ families will be institutions taking care of the same kind of persons, as maintained according to the possibilities and wishes of well as with social centres and homes for elderly people the residents and their families. from neighbouring villages in such a way as to enhance the social inclusion of residents as much as possible. 3• Temporary and respite care or urgent personal- ised care for adults coming from other settings, in a An architectural project incorporated in our objectives networking perspective and in response to transitory needs related to personal or familial situations. Situated in the centre of Messimy, “Sesame’s Village” will be composed of 5 buildings for a habitable surface area The 36 places are divided as followed: of 2 017 m2: one administrative staff building and four individual houses built on a 8000 m2 lot with orchards - 32 places for permanent care with individual rooms and and greenhouses for the cultivation of plants. private bathrooms

The four houses will each contain between 8 and 10 individual bedrooms of 20 m2 with bathrooms en suite - 4 places for temporary care as an alternative to hospi- (sink, shower and toilet). They will also contain a kitchen talisation or living at home. for the preparation of breakfasts (cold meals are deliv- ered), a dining room and a living room. Sesame’s Village will open in Messiny in September 2010 when the 19 people who have been living in Saint-Sorlin A little square with a covered market, kiosk and benches since July 2009 will move in their new place of residence. will give the whole structure the aspect of a real village, bearing in mind that each building will have a distinctive A Tabet façade. The interiors, however, will be identical, with Vice présidente “colour” reference points and characteristic decoration. Sésame Autisme Rhône-Alpes Autism - Europe

Page 10 Project

CE – Autism Connections Impact is expected on personal level visit, its culture, language, climate, Europe (higher ICT competences, social and history, etc. A communication skills, independence, active citizenship), and on system • Publication of a web newspaper Autism Connections Europe consor- level (awareness, acceptance, policy after each international congress. tium’s objective is to provide adults changes, EU methodology). The (18 years old and more) with autism project began in November 2009 Expected benefits for spectrum disorders with the oppor- and will end in October 2011. tunity to enhance their communica- participants tion and social skills. To do so, they will be invited to participate in Activities scheduled Participants will gain communica- online communities, travel to other tion skills in the context of internet countires (Slovenia, Italy, Great Adults with ASD will be invited to communication as well as real-life Britain and Estonia). One of the participate in the following activities: international communication. They objective is also to empower them will also be trained to use ICT. The to advocate for their rights, and help • ICT training workshops, in which process of development of virtual them become active citizens. adults with ASD will learn how to use and real social interaction and ICT, how to join and communicate communication will be documented About the project in online communities, what are the in a scientific research. Guides hazards and risks of the internet, with instructions on how to use ICT how to communicate safely online. Project ACE is managed by Center for communication, different web dangers, and alternatives to virtual for Autism, Slovenia and includes • Participation in international the following partners: Autism- communication will be presented in a congresses, where adults with ASD booklet and in a movie. Participants Europe, Estonian Autism Society, will meet their colleagues from other Oxford Brookes University, Agencija will be able to influence on public countries, participate in social activi- policies. Imelda Ogilvy and Autism Romania. ties and present their problems and The project is supported by the achievements to experts and public Lifelong Learning Programme – authorities. Before each international Grundtvig subprogramme. Autism- congress a preparation workshop will Europe will be mainly involved in be organised, about the country of the dissemination of information.

Page 11 IX International Conference AUTISM-EUROPE A FUTURE FOR AUTISM

DAVID AMARAL, Distinguished Professor of research leadership including serving as a consultant for the Psychiatry and Behavioral Sciences, is the National Academy of Sciences, the Centre for Diseases Control, Director of Research, University of California at the American Academy of Paediatrics, the MRC (UK), the MIND Davis M.I.N.D. Institute and President of INSAR Institute (U.C. Davis). (International Society for Autism Research). His interests include research on the neuro- anatomical, behavioral and electrophysiological organization and EVELYNE FRIEDEL is a lawyer specialised in functions of brain systems that are involved in learning, memory, International and European law. She has been emotion and social behavior. He also conducts research into president of Autism Europe since 2008. She the neurobiological underpinnings of autism spectrum disor- was the author of the Collective Complaint ders, ranging from longitudinal MRI studies of children with against France regarding the right to education autism to evaluation of autoantibodies in these children and of children and adults with ASD and represented in their mothers, as well as in nonhuman primate models of Autism Europe before the European Committee of Social Rights autism. of the Council of Europe.

SIMON BARON-COHEN, PhD, Professor of JOAQUIN FUENTES-BIGGI, M.D., is a Child and Developmental Psychopathology, Director of the Adolescent Psychiatrist who specialised in ASD Autism Research Centre (ARC) and CLASS at the Albany Medical Centre Hospital, New (Cambridge Lifespan Asperger Syndrome York, and at the Western Psychiatric Institute & Service) in Cambridge, vice-president of INSAR, is Clinic, University of Pittsburgh. He is the scien- author of several scientific publications, including tific responsible of the GAUTENA programme Mind blindness (1995), and the DVD-ROM Mind Reading: an for ASD in the Gipuzkoa province, Spain, director of the Child interactive guide to emotions (2003). He has been awarded from Psychiatry, Policlínica Gipuzkoa, coordinator of several research the American Psychological Association, the British Association programmes in the field of ASD, and author of the manual for Science (BA), and the British Psychological Society (BPS). His Pharmautisme. He is member of the Executive Committee of current research is testing the ‘extreme male brain’ theory at the IACAPAP and co-ordinator of the working group on ASD of the neural, endocrine and genetic levels. Instituto Nacional de Salud Carlos III, Madrid.

THOMAS BOURGERON, M.D., is a geneticist PATRICIA HOWLIN, PhD, Professor of Clinical and director of the Human Genetics and Cognitive Psychology at St George’s University of London, Functions at the Department of Neuroscience is Consultant Chartered Clinical Psychologist and at the Institute Pasteur in Paris. He identi- Fellow of the British Psychological Society. Her fied several mutations associated with ASD in interests include research on the effectiveness genes that impact the development of neurons of interventions for ASD, evaluation of different and their ability to form synapses. Dr. Bourgeron is a member intervention programmes, including comparative studies of home of the European Molecular Biology Organization and received and school based treatments; a randomized control trial of the several prestigious awards and honours, including the 2005 Picture Exchange Communication System (PECS), long term Young Investigator Award from the European Neuroscience studies of the impact of early interventions, and the impact of Institute and the French Academy of Sciences’ award for employment programmes for high functioning individuals with Biological Discoveries of 2007. His research interests are autism/Asperger syndrome. focused on the genetic origin and evolution of human cognitive functions. AMI KLIN, PhD, Harris Professor of Child Psychology and Psychiatry is the director of ERNESTO CAFFO, M.D., Professor of Child and the Yale Child Study Centre’s Autism Program, Adolescent Psychiatry, University of Modena which is committed to research, training and and Reggio Emilia, Italy, President and founder to providing comprehensive clinical services of SOS II Telefono Azzurro Onlus, President to children with autism spectrum disorders of the Foundation for Study and Research in and their families. The program is also advocacy. His current Childhood and Adolescence, former President research focuses on mechanisms of socialization and their of ESCAP (European Society for Child and Adolescent Psychiatry) disruption in the autism spectrum disorders, including the devel- and current President of the European Academy of Child and opment of novel techniques to quantify social processes using Adolescent Psychiatry (EACAP), is the author of numerous eye-tracking technologies. He and colleagues are monitoring scientific publications in the field of child psychiatry, develop- babies at risk for autism for indications of vulnerabilities for mental psychology, autism, traumas and abuse in childhood and autism in early infancy. adolescence.

CATHERINE LORD, PhD. professor of ERIC FOMBONNE, M.D., is the Head of the psychology, psychiatry and paediatrics, Director Division of Child Psychiatry at McGill University of the Autism and Communication Disorders and Director of the Department of Psychiatry at Centre (UMACC), University of Michigan, the Montreal Children’s Hospital. He is a leading providing clinical evaluations, consultations and authority on epidemiology of autism and on the training in the field of diagnosis of ASD, she was putative links between autism and immunization. involved in developing the gold standard diagnostic instruments He has also been involved in family and genetic studies of autism, ADOS and ADI-R. Her current projects include the development and in outcome studies. He has a long track record of scientific/ of a toddler module for the ADOS, a repository of cell lines and Autism - Europe

Page 12 IX International Conference Catania, Italy Register now on the website ! www. AUTISM-EUROPE autismeurope2010.org/index.html A FUTURE FOR AUTISM 8 - 10 October 2010

phenotypic data for families with a child with autism and a typical president of SINPIA and was member of the working group on ASD, child, the development of a measure of language in children with Ministry of Health, in 2007-2008. ASD, studies of different interventions with very young children and a longitudinal study of children followed from age 2 who are now in their teens. SIR MICHAEL RUTTER has been described as the «father of child psychology”. Currently he is Professor of Developmental Psychopathology at the NANCY MINSHEW, M.D., Professor of Psychiatry Institute of Psychiatry, King’s College, London, since and Neurology at the University of Pittsburgh School 1966. In 1984 he set up the Medical Research of Medicine, Director of the University of Pittsburgh Council (UK) Child Psychiatry Research Unit and the based Collaborative Programs of Excellence in Social, Genetic and Developmental Psychiatry Centre in 1994. His Autism (CPEA), is an internationally recognized work includes studies in the field of autism including links between expert in autism. Dr. Minshew is collaborating with research and practice, genetic and epidemiologic studies, biological a team of scientists from Carnegie Mellon University and University and social factors. He is also recognized as contributing centrally to of Illinois at Chicago to find the neurological, genetic, and cognitive the establishment of child psychiatry as a medical and biopsychoso- basis for autism. Her research has completed large-scale neuropsy- cial specialty with a solid scientific base. chologic studies, eye movement and posturography studies, struc- tural MRI, and MRS (magnetic resonance spectroscopy) of high functioning autistic individuals, resulted in evidence of a neocortical RENATO SCIFO, MD, Child and Adolescent systems as the primary site of CNS dysfunction. Psychiatry, coordinates the programme for ASD of the Child Psychiatry, at the Hospital Marta Santa Venera, Acireale. He is responsible for a programme providing support to mainstream schools for the VINCENZO PAPA, M.D., is president of the parents inclusion and special education of children with ASD, association “Un futuro per l’autismo”, Catania, which in collaboration with the local parents association. has supported for many years families of persons with ASD by organising conferences, training for teachers, social workers and health professionals RUTGER JAN VAN DER GAAG, M.D., is a child and and respite services for persons with ASD. He is member of the youth psychiatrist who conducts research in the field Board of Directors of Autismo Italia, and represents Autismo italia of developmental psychopathology. Early detection within the Scientific Programme Committee of the IX International of and intervention in autistic spectrum disorders, Congress of Autism-Europe. treatment of ADHD, neuropsychological interactions in developmental disorders, recognition of autism spectrum disorders in adults and double diagnoses (addiction and GIACOMO RIZZOLATTI, M.D., Full Professor and psychopathology in young people) are some of the projects that Director of the Department of Human Physiology, he is currently involved in. Van der Gaag’s department is working University of Parma, is Associate Member of the on a dataset of the results of all children and adolescents that Neuroscience Program, San Diego, member of have been clinically studied by Stichting Kinder- & Jeugdpsychiatrie «Academia Europaea», of «Accademia dei Lincei», Oost-Nederland (Child and Youth Psychiatry East Netherlands). «Honorary Foreign Member» of the American Academy of Arts and Sciences and “Associé étranger” of the Académie des sciences, France. The main focus of his research concerns the motor system FRED R. VOLKMAR, M.D., professor of psychiatry, and its role in cognitive functions. In the last years he was mostly paediatrics and psychology, director of the Child involved in studies of the mirror neuron system. His experimental Study Centre (CSC), Yale University, and chief of the approach consists of recording the activity of single neurons in non Department of Child Psychiatry at Yale-New Haven human primates and of brain imaging in humans. Hospital, is a world authority in the diagnosis and treatment of autism. At the CSC, Volkmar directs an autism clinic that conducts cutting-edge research on the basic SALLY J. ROGERS, PhD, Professor of Psychiatry biology of autism and its diagnosis and treatment. An editor of and Behavioral Sciences at UC Davis M.I.N.D. the Handbook of Autism and Pervasive Developmental Disorders, Institute, Sacramento, specializes in conducting Volkmar was the primary author of the autism section in the latest research into early social, cognitive, and emotional edition of the Diagnostic and Statistical Manual of Mental Disorders, development, communication, imitation and social the standard guide to psychiatric diagnosis. relationships in people with developmental disorders, and treatment efficacy in autism. Her clinical interests include early diagnosis and intervention for children with autism spectrum disor- ders, and evaluation of cognitive, behavioral, social, emotional, and adaptive functioning in children with other developmental disorders. She has written extensively in her field, authoring numerous articles and books and developing training videos on child development.

SEBASTIANO RUSSO, M.D., Child and Adolescent Psychiatrist, director of Child Psychiatry, Ospedale Marta Santa Venera, Acireale, which has been collaborating for many years with the local parents association in developing comprehensive care programmes for children with ASD. He is vice-

Page 13 Participants will send work properly take no responsibility for loss or framed, without glass, and packed. damage to your work. Organizers won´t frame works. • Participation forms must be sent The name of the artist and return to (by fax, post or E-mail) Autismo address must be written on the back Burgos, Spain, before 15th February of the work. 2010 It is advisable to send one photo of • Works must arrive to Autismo the work with the name of the artist Burgos, Spain, before 4th May on the back. 2010. • Since collecting funds is not the • The exhibition may be itinerant, so aim of the Exhibition, the sale of work other venues may be included. All is not allowed during the time of the participants will be informed about Exhibition. this. OUCHES OF AUTISM The artists allow the organisers to • The sending of the participation T mention freely their names, as well form implies the agreement on these 5th INTERNATIONAL ART as to publish their work in catalogues bases. The organisation may intro- EXHIBITION OF PEOPLE or any other format that the organ- duce any changes in the calendar, WITH AUTISM isers may decide. as well as to decide anything not • The Exhibition will take place at the mentioned in these norms. Since 1997 Autismo Burgos has Congress Venue, whose capacity is organized the International Art limited. If necessary, a selection of The address Exhibitions of People with Autism, works may be done by a panel of of Autismo Burgos is: impartial people related to autism whose aim is stimulating creativity C/ Valdenúñez, 8 and arts. and artistic expression among 09001 - Burgos - Spain • During the opening act the 3 people with autism. Fax: 34-947-461245 awards ARTISMOS 2010 will be announced and the winner artist´s Phone: 34-947-461243 Participation rules: work will illustrate the announcing E-Mail:[email protected] Works must be original and unpub- poster for the 6th edition. The lished. They can be: paintings, Organisers will give a certificate of This form is also available at: photos, etc. The number of works is participation to the artists. There www.autismoburgos.org limited to one piece per participant. also will be a PRICE FROM THE PUBLIC attending the exhibition. • Measures: pictures´ measures • The organisation will not cover must range from 50 to 80 cm. cost for sending or returning works (frame included) to participants. The organisers can

Participation Data : (Each participant or Association/Organisation must send this form directly to Autismo Burgos Association)

Your details : Name : ...... Tel. : ...... Adress : ...... Fax : ...... Age : ...... E-Mail : ...... Association/Organization: (If participant attends any Organisation or Centre, it is enough to mention the data relating Organisation or Centre, no personal data are required)

Work details: : Work must be returned to: A The same address as above A A different one : ......

Type of work (materials, e.g. painting) : Titef : ...... Other information of interest : ...... Measurements of the work : ...... Brief biography of the author : ...... Person to contact : ...... Position : ......

(Please, don´t forget to enclose a photo of the work with the name of artist on the back as soon as possible.)

I hereby accept the above conditions Date : ...... Name : ...... Signature : ...... Autism - Europe

Page 14 INVITATION TO AUTISM-EUROPE’s GENERAL ASSEMBLY EXHIBITION Kassel - Germany « I spy with my little eye … » 5 June 2010 May 29th to June 20th 2010 Kassel (Germany) In accordance with the statutes of our organization, we are pleased to invite you to attend the Autism Europe Annual General At the occasion of the 40th Anniversary of Assembly, which will take place in Kassel, on Saturday 5 June Autism Germany, from May 29th to June 2010, in the afternoon, from 14.00-18.00: 20th 2010 , Autismus Deutschland e.V. will present the art exhibition “I spy with my little eye …” of autistic artists in the documenta- • Presentation Halle in Kassel, well-known for hosting the of the executive committee report international art-event Documenta. More than 180 artists submitted their artworks • Presentation including painting, sculpture, photography, of the Activity Report : 2009 video and installation to a jury. Among them such well-known artists as Konrad H. Giebeler, as well as the Hamburg-based art group “Die • Presentation Schlumper” or Adolf Beutler, who received the of the financial report: 2009 3rd place prize in the first EUWARD contest (European Award Painting and Graphic Art by Artists with Mental Disability 2000). • Presentation The initiative AKKU is very proud to announce of the Work Programme 2010 Jan Hoet, international curator (Documenta IX) and founding director of the museum MARTa • Election in Herford, as ambassador of the initiative. He was deeply impressed by the quality and variety of Administrators of the artworks. Jan Hoet will support the show, with his knowledge and network.

All the working documents related to the General Assembly will be The interest in the show and the initiative AKKU e-mailed later to the registered participants. in Germany is enormous. We will represent the initiative at the big “Encounters Day (Integration through Culture)” which takes place under the auspices of Ruhr.2010 on June 27th . AKKU Gala Diner : is also in discussion with several museums in Saturday June 5th 2010 – 20h00 Germany which are very interested in further Please note that the AE Council of Administration meeting will also showings of the exhibition. take place, in the morning, on Saturday June 5th 2010 and Sunday 6th June 2010. A visit of the Art Exhibition is also scheduled on We will be very delighted to welcome you next Friday 4th June 2010. summer in Kassel.

For more information, please contact Autism-Europe secretariat: Maria Kaminski (president) [email protected]. Katharina Dietz (project management)

Page 15 embers M Activities

Rambling in Swiss Saxony

Who doesn’t just love travelling? Getting out of the daily to forget them, and so things took form. We eventually routine to explore distant places, to experience something found suitable accommodation in the St. Ursula Catholic new, exciting, or even inspirational. The fact that people family inn in Naundorf close to the town of Wehlen. with Autism also enjoy travelling is shown by many Having the right travel companions is also important, and reports that arrive at the editorial office of our newsletter for this expedition they were our President, Mrs. Maria “Autismus”. They also report of the big and little problems Kaminski, Mr. Frese, and I. a tourist with Autism can encounter. And so we had the idea of organizing our own special expedition. As the plan needed to be as tailored to the participants as possible, detailed planning did need a bit more effort. No sooner said than done. We found the destination This included several meetings and visits to the area. So during a visit to Dresden. The trip should go to Swiss many questions needed to be considered; Art museum Saxony and, of course, to Dresden. I recorded some or Grünes Gewölbe (Green Vault)? Or neither, as they spontaneous ideas for the expedition quickly so as not are too stressful? Where can you ramble safely, whilst still being in the middle of mountainous countryside? How much time would be needed? Will all arrangements work out? Will it all come together in the end? This was an exciting matter for me, since I’m just a volunteer tour guide.

And then, the time had come. Armed with a large Autism logo, I waited for the group at Dresden’s main train station. From there, we proceeded with people and baggage in a 2 car convoy, and already I started to feel some pressure. My passengers, 3 young men with ASD, quickly entangled me in difficult discussions, right in the middle of the heavy city traffic! Relaxation at our arrival was assured, as we are greeted with coffee and cake. A short walk followed, which allowed us a first look at the picturesque Elbe valley.

Swiss Saxony stretches south east from Dresden. It caters well for tourists and is famous for its impressive sandstone formations. The best way to get to know them is to ramble through them. Narrow gorges bordered by stark boulders give way to fields, forests, soft valley and the Table Mountains typical to the area.

Our first leg saw us climbing the Lilienstein (Lily Stone). It towers 200 meters over the Elbe valley. The labored climb was, however, quickly forgotten as we admired the amazing view and enjoyed the tasty food at the peak’s restaurant. The courageous ones then proceeded to Autism - Europe

Page 16 climb out to the rocks at the edge of the Lilienstein using dangerous looking, but well secured, metal ladders and walkways. From there they could enjoy the view of the sheer rock face dropping away into the valley. The remainder of us watched from a safe distance.

The following days were also filled with new experiences. In Dresden we visited the historic city panorama where you can discover lots of Pictures interesting details. Of course we also had a visit to the city centre and the Frauenkirche. We finished the day with lunch together at the Autism Pict 1 therapy center followed by Königstein Castle. This is a must for all visitors, in front of the Semper Oper with lots of canons, trenches, thick walls and the history of the discovery of Meißner porcelain. Pict 2 our group in front of the Lilienstein Evenings also had plenty to do. The common room at the hostel had table tennis, billiards, a piano, a small library and a large collection of board games. We played our way through all of them, and enjoyed the feeling of being returned to our childhood. Fun was indeed had by all.

Of course our group was quite noticeable in public, and everyone enjoyed the companionship of being part of it. Of course there were the occasional strange look from others, but we always dealt with that with cheerful aplomb. Everyone could be themselves, and the small problems that occurred were overcome with gently support.

Our last trip took us back to the centre of the national park. An experienced climber (and professional therapist) guided us along narrow paths right through the middle of the rock formations, carved into interesting shapes by the elements. Unfortunately the weather was not as kind to us for this last trip.

After that, we were back to the hostel to pack our cases. One of the group, Stefan Weingarten, summed up his experiences in the following words “This week feels as if much more time has passed than really has. We have experienced so much. We got to know one another, and have become close. It was wonderful.” Thank you Stefan!

And it doesn’t stop there. The next group has just returned from the Black Forest. What’s next? – Prague? Or maybe the Alps? Or what about Rome?

Bettina Bönsch

Page 17 News

Gluten-free and Casein-free Diets

Paediatricians from the French-speaking Group of tial links between ASD and chronic inflammatory diseases Gastroenterology have recently been alerted to the of the digestive tract. Although no data can confirm that increasing number of families using or willing to use the prevalence of digestive disorders in children with ASD gluten-free and casein-free diets (GF/CF diets) for is higher than in the rest of the population, the report children presenting Autism Spectrum Disorders (ASD). recommends research into these disorders as they may cause behaviour modifications, particularly in children Further to the paediatricians’ request, the French Agency who cannot express pain verbally. for Food Safety (AFSSA) decided to assess the efficacy and safety of GF/CF diets. AFSSA is an independent public Finally, the investigators tried to assess the safety of GF/ agency contributing to the protection and improvement of CF diets which, in all cases, represent a risk for a child’s public health through monitoring, alerts, research and nutritional state and growth. According to the report, research initiatives. The Agency is responsible for opera- there is no scientific data that allows conclusions to be tional assignments including health and nutrition risk and drawn either on the benefits or the risks of these diets. benefit assessment. Nevertheless, such treatments should only be carried out under the strict supervision of qualified nutritionists. AFSSA has published a report on the “Efficacy and safety of gluten-free and casein-free diets proposed in children The conclusions of this report concord with the official presenting pervasive developmental disorders (autism Autism-Europe document entitled: “Persons with Autism and related syndromes)” (1). GF/CF diets have, in fact, Spectrum Disorders: Identification, Understanding, become an alternative form of intervention for autism Intervention” as well as with numerous articles and guides over the years. to good practice.

Based on the knowledge that GF/CF diets represent a risk for a child’s nutritional state and growth, this 1) Bresson JL, Houdart S, Margaritis I. Rapport de report initially focussed on researching and evaluating l’Agence Française de Sécurité Sanitaire des Aliments : reliable scientific data to assess their efficacy. Extended Efficacité et innocuité des régimes sans gluten et bibliographic research was undertaken in order to assess sans caséine proposés à des enfants présentant des the impact of GF/CF diets and the effects of more gluten troubles envahissants du développement (autisme et and/or casein on self-expression skills, verbal and cogni- syndromes apparentés). April 2009. tive functions, and motor and behavioural skills in children 2) Cass H et al. Absence of urinary opioid peptides in and adolescents presenting ASD. children with autism. Arch Dis Child 2008, 93 : 745-750. It was acknowledged that GF/CF diets limit the diffusion of neuromediators affecting the brain. It was suggested 3) Fuentes-Biggi J et al. Guide de bonnes pratiques dans that autism may be associated with digestive disorders le traitement des troubles du spectre autistique. or intestinal permeability allowing the passage of derived Revista de Neurologia 2006, 43 : 425-438 opioid peptides generated by the enzymatic digestion of milk and cereals. These opioid peptides would then reach 4) Johnson CP, Myers SM and the Council on Children the central nervous system and affect brain functioning. with Disabilities. Identification and evaluation of children with autism spectrum disorders. Pediatrics The report underlines that, according to current scientific 2007, 120 :1162-1182 knowledge, to avoid all proteins that might generate derived opioid peptides would mean the exclusion of practically all food products. Moreover, the most recent 5) Scottish Intercollegiate Guidelines Network. biochemical methods do not permit the detection of opioid Assessment, diagnosis and clinical intervention for peptides in the urine of autistic subjects (2). children and young people with autism spectrum disorders. A national clinical guideline. 2007. www. In the second part of the report and always on the basis sign.ac.uk. of scientific literature, the investigators studied the poten- Michel FAVRE Autism - Europe

Page 18 utism spectrum disorders A in a business context The autism community and the business community have been separate entities for a long time. But it does not have to be so. In 2008 the IT Prize Denmark was given by the Danish IT Industry Association to the company SPECIALISTERNE. The unusual circumstance is that the majority of the employees in SPECIALISTERNE have Autism Spectrum Disorders (ASD). internationally. The first international SPECIALISTERNE The prize is the proof of acceptance of people with ASD franchise will be established in Glasgow, Scotland, in 2010. competing at market terms in the Danish IT business. The vision is to make societies respect and embrace people with ASD as valuable and worthy citizens. To fulfil the vision, The consultants of SPECIALISTERNE have ASD and solve we intent to establish SPECIALISTERNE showcases globally tasks like software testing, quality control, data entries, and to enable and certify large companies in the business packing/shipping, programming and monitoring for large sector to hire and manage people with ASD and similar Danish and international companies. The company is a case challenges (i.e. ADHD). study at Harvard Business School and I was interviewed by Harvard Business Review to discuss what the traditional We are convinced that the SPECIALISTERNE concept will business can learn from managing people with ASD. work in other countries in Europe. With the support of With SPECIALISTERNE we have opened the door to the the autism communities and the business communities we business community for people with ASD. can transfer the model to the different states and provide meaningful and productive jobs for a large number of people We have a proven track record in Denmark of demonstrating with ASD in Europe. that behind the disability you can assess special abilities which are potentially very valuable in the business sector and can be harnessed to meet and exceed the needs for special Best, skills in the market. Thorkil Sonne

A year ago SPECIALISTERNE was handed over to Specialist Founder of SPECIALISTERNE and Specialist People Foundation People Foundation - a not for profit organization with the www.specialisterne.com purpose of disseminating the knowhow from SPECIALISTERNE

Page 19 Autism - Europe A ydoe) () Se ne hr talk her ended She (1). syndromes)” related and (autism disorders mental develop- pervasive presenting children in proposed diets casein-free and free gluten- of safety and “Efficacy entitled then French Agency for Food Safety (AFSSA) She Joaquin others. presented a document published by the Dr. among with Fuentes, co-author is she which Autism Identification, of Intervention” Understanding, with Disorders: who Spectrum “Persons Centre Tours), official document Autism-Europe Psychiatry, the presented Catherine (University Child of Professor by Barthélémy nication commu- a with opened symposium The (ASD). disorders spectrum autism with support and persons for care programmes and methods of and realisation autism the of understanding a better towards perspectives international and national of informa- range a offer provide and tion the to of was objective symposium main The Pasteur. Louis of apartments and to museum the visit delegates’ American the with the to began day The meeting. the of success contributed and Americans 30 participated approximately of tion delega- a as well as professionals and parents 300 than more period, holiday though summer the in place took meeting Even the Psychiatry. and Child Adolescent of Academy American the of President Institute, M.I.N.D. the of Hendren visit Robert Professor the of Paris of to occasion the Joaquin on Dr. Fuentes Dr. and of Bourgeron initiative Thomas an was symposium The Institute. Pasteur the and Orange Fondation the by funded and Autisme Aid Pro association parents French the of help the with Autism-Europe by ised Institute, Paris. The meeting was organ- international Autism for an « 2009 symposium July 16 On Page Page Paris Pasteur the at utism-Europe 20

» a hl a te Pasteur the at held was

A nticipating a Future Future a nticipating S ymposium I nstitute, of ASD. of of role incidence the the in factors environmental of understanding our state the of of - evidence scientific sive conclu- of lack the given - caution some with spoke also He changes. biological and behaviour of patterns distinct their by characterised autism of phenotypes or distin- subgroups recognised among to guish aims which (APP), Project” research and, in significant particular, the “Autism Phoneme in involved is the institute his that projects of some presented He treatments. appropriate developing and neurode- disorders velopmental of causes the investigating of objective the has that organisation research multidisciplinary international (Medical an California), Sacramento, Neurodevelopmental Disorders, Institute of M.I.N.D. Investigation head the is of Hendren Robert Professor families. their care and ASD with persons of lives daily and the on treatment have can that melatonin with effect beneficial the underlined also Bourgeron Prof. term. medium the in greater ASD and of understanding diagnosis early to would point that laboratories international of number rearrangements a in investigation under are These autism. reveal with to persons possible in abnormalities chromosome is latest the it with technology, how, explained then He neurons. brain a between signalling at guarantee which cohesion synapses the of level good maintaining function the of have that …) connexins in mutations 3, Shank (Neuroligins, proteins certain to latest point the which highlighted findings He autism. component in genetic the of knowledge Thomas our of state the about Professor spoke VII) University, Paris Diderot part, (Denis Bourgeron his For autism. concerning knowledge current 2009 of of situation end the the on at publica- report a the of tion announced in and ongoing France is that Autism 2008-2010 the Plan of presentation the with • These two documents are avail- are documents two These • ASD. with persons of care the for tions condi- which are available outside France best the on alike professionals given a new perspective to parents and the in the future and that this symposium has again at held be will organised institute Pasteur meeting hope the We France. that in and USA the in situation the of examples provided and English 1h30 and participants posed numerous questions French the lasting which an during discussion with concluded animated symposium The Spain. in up set system the of stones corner the constitute in society inclusion and autonomy that evident education, is it represents, care of with system this that cost the Despite person ASD. the of age the whatever Province, Basque the in employed care of system the presented he Moreover, recom- be mended and applied in the field of ASD. can that approaches tive effec- the and evidence insufficient to due made be can conclusions no which for treatments the banned, be should that methods the of spoke He autism. the individual needs of educational each person with adequate to adapted programmes, and methods up setting of usefulness the on converge guidelines these All (2). Spain in and world the in practice available good recommendations and guides various the document cited and official about San Autism-Europe spoke (Gipuzkoa the also Gautena, Spain) Fuentes Sebastian, Clinic, Joaquin Out-patients Dr. • These guides to good practice good to guides These • websites of websites the on French and English in able http://iier.isciii.es/autismo are available at the web address web the at available are or www.proaidautisme.org

www.autismeurope.org Michel Favre Michel

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utism, Current and Future Prospects – peutic interventions that could modify social engagement A towards good practices for all strategies as soon as autism is detected. Vittorio Gallese (Neurologist, Italy) has studied the role of th Arapi’s 10 Autumn University, mirror neurons on social interactions in order to under- 6-10 October 2009 stand someone else’s actions and intentions. Mirror neurons also play a role in imitation skills and in the brain’s This vast topic included scientific practice, approaches planning of daily gestures, and are necessary for their to care, their development, efficiency and validity as execution. Referring to the results, in a distant future we well as early detection, genetic diagnosis and the use of could possibly consider reorganizing the brain to partly medications. Over the four days of the Autumn University compensate for the deficit functions. Even though studies these subjects were dealt with in plenary conferences, on mirror neurons open new fields of investigation for a workshops and poster sessions by numerous researchers better understanding of autistic disorders we should be and clinical specialists. very cautious as these hypotheses have only been tested on primates to date. Here are some of the 4-day highlights: Other current studies on eye gaze orientation and pupil- lary dilatation show dilatation differences between autistic Bruno Falissard (Child Psychiatrist, France) and Nadia children and children presenting no behavior disorders Chabane (Child Psychiatrist, France) underlined the need when watching someone else’s social behaviors. This to refer to a rigorous methodology, like the one used in specific aspect could lead to early intervention on social somatic medicine, in order to assess different interven- symptoms. These research data are based on the hypoth- tions in persons with autism. However, current methods, esis according to which a dysfunctional mirror-neuron which integrate quantitative and qualitative assessments, system is a causal factor in PDD (Terje Falck-Yitter, often come up against autistic peculiarities. This makes Psychologist, Sweden) the interpretation of output more difficult since it is based on standard instruments more or less adapted to this Jacqueline Nadel (Psychologist, France) presented pathology. Taking into account the new hypotheses in research work on the imitation of actions as a means of the field of PDD, Nadia Chabane suggested we rethink non-verbal communication and on the ability to establish evaluation strategies in order to obtain more individual- a link between perception and action generation. She ized measures and implement paradigms integrating “the suggested that the MNS (Mirror-Neuron System) may be notion of interpretative bias” responsible for connecting the emission and reception of a message, which could mean that the MNS plays a With a touch of humor, Erice Willaye (Psychologist, key role in social interaction. By referring to video tapes Belgium) assessed the difficulties observable in many of spontaneous imitation, Jacqueline Nadel showed that services in applying good practices or, in other words, autistic children with no verbal language also have this in implementing educational strategies corresponding to communication skill, which could be used to develop other the specific needs of people with autism. He attempted means of communication. to identify what is hindering their on-site implementation. Apparently, it is not due to a lack of professional training As a partnership association between professionals and or to any financial problems but to the professionals’ fear parents, ARAPI allocated speaking time to different organ- of change. izations: UNAPEI, Autisme France, Sésame Autisme, SatedI and Autism-Europe. Representing Autism-Europe, Introduced by Mônica Zilbovicius, Ami Klin (Psychologist, my talk dealt with “The Rights of Persons with Autism”. USA) dealt with eye gaze studies using the eye-tracking I denounced, with examples, the discrimination these technique. This non-invasive technique makes it possible persons are still victims of in most European countries. to localize and follow someone’s eye gaze with great precision. Impairments in social engagement are already Not only were these 4 days highly informative but they noticeable in autistic infants who are being talked to were also the opportunity for professionals and parents to since they mainly fix their eyes on the physical aspects of exchange informal information, to establish and reinforce their environment (such as the mouth) and not on those contacts, and to plan visits or make exchange projects. aspects expressing emotions (such as the eyes) like In France, the Autumn University remains the principal ordinary infants do. These studies show the tendency of occasion for reviewing breakthroughs in research and autistic infants to focus on physical and material aspects innovative interventions in the field of ASD. rather than social ones from an early age onwards. Given the plasticity of the brain, research should focus on thera- Rita Thomassin

Page 21 MEMBER ASSOCIATIONS OF AUTISM-EUROPE

GREECE PORTUGAL FUNDACION MENELA FULL MEMBERS E.L.P.I.D.A. Federacao Portuguesa de Autismo c/o M. Jimenez Casas Avda Marqués (national associations of people with Prof.M. Antoniadou, Univ. of Thes. Rua José Luis Garcia Rodrigues de Alcedo, 19 autism and parents) Oreokastro P.O.Box. 48 Bairro Alto da Ajuda E - 36203 VIGO - PONTEVEDRA GR - THESSALONIKI CP 57013 PR 48 P-1300-565 Lisboa Tel: + 34.986.42.34.33 Tel: + 30.2310.697.614 Tel: + 351.21.361.6250 Fax: + 34.986.48.34.06 ARMENIA Fax: + 30.2310.696.460 Fax: + 351.21.361.6259 E-mail: [email protected] Autism Overcoming E-mail: [email protected] E-mail: [email protected] Website: www.menela.org Yerevan, Armenia Website: www.appda-lisboa.org.pt/ 9 Arshakuniats St., G.S.P.A.P. federacao GAUTENA Tel: +374 91 41 59 83 c/o Prof. C. Alexiou, Univ.of Thes. P.O. Box 1000 +374 91 73 90 12 2, Athenas Street APPDA Norte E - 20080 SAN SEBASTIAN E-mails: [email protected]; GR - 10551 ATHENES Rue D. Carlos 1, n110 Tel: + 34.943.21.53.44 [email protected] Tel: + 30.210.321.6550 4430-258 Vila Nova de Gaia Fax: + 34.943.21.52.39 Fax: + 30.210.321.6549 Tel: 00351 22 716 9550 E-mail: [email protected] BELGIUM E-mail: [email protected] Fax:00351 22 716 9559 Website: www.gautena .org A.P.E.P.A. E-mail: [email protected] Rue de l’Aurore 98 HUNGARY Website : www.appda-norte.org.pt/ SWEDEN B-5100 Jambes Hungarian Autistic Society (HAS) contacto RIKSFORENINGEN AUTISM Tel: + 32-81-74.43.50 1085 Budapest Bellmansgatan 30 Fax: + 32-81-74.43.50 Baross u. 28. ROMANIA S- 118 47 STOCKHOLM E-mail: [email protected] II. em. 6/A. 12-es csengő. AUTISM ROMANIA Tél: +46 8 702 05 80 Website: www.ulg.ac.be/apepa Tel: +36 1 301 9067/354 1073 O.P. 9 C.P. 95 Fax: + 46.86.44.02.88 Fax: +36 1 302 1094 BUCAREST E-mail: [email protected] V.V.A. 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Fax: + 33.1.45.41.52.93 Website : www.appaal.lu Tel: +34.91.766.22.22 org.uk E-mail: [email protected] Fax: +34.91.767.00.38 Website : www.proaidautisme.org Fondation Autisme Luxembourg E-mail: [email protected] 31, Duerefstrooss, Website: www.apna.es AUTISME FRANCE L-9766 Munshausen AFFILIATED Lot 110-111 Voie K Tel.: +352-269.11.11 AUTISMO BURGOS MEMBERS 460 avenue de la Quiera Fax:+352-269.10.957 C/ Valdenunez, 8 (regional associations of people with F-06370 Mouans Sartoux E-mail : [email protected] E - 09001 BURGOS autism and parents) Tel: + 33.4.93.46.01.77 Website : www.fal.lu Tel: + 34.947.46.12.43 Fax: + 33.4.93.46.01.14 Fax: + 34.947.46.12.45 CROATIA E-mail: [email protected] THE NETHERLANDS E-mail: autismoburgos@autismoburgos. A.C.A.P. 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Montwilla 2 Website: www.ocautisme.be 71-601 Szczecin AUTISME EVEIL FUNDACION “Mas Casadevall” (FMCA) E-Mail: [email protected] 179, Rue des Narcisses Apartat de Correus 172 CZECH REPUBLIC F - 74330 EPAGNY E-17820 Banyoles (El Pla de l’Estany- Autistik Club Community of Hope Foundation Tel: +33.4.50.51.11.50 Girona) c/o Miroslava Jelinkova Ul. Krakusów 1A/43 Fax: +33.4.50.68.18.99 Tel: +34.972.57.33.13 Kyselova 1189/24 30-092 Kraków E-mail: [email protected] Fax: +34.972.58.17.12 182 00 PRAGUE 8 Tel:+48.12.413.06.69 Website: www.autisme74.com E-mail: [email protected] Tel: + 42.2.471.42.55 Fax: +48.12.413.29.01 Website: www.mascasadevall.com Fax: + 42.2.471.42.55 E-mail:[email protected] AUTISME POITOU-CHARENTES E-mail: [email protected] Monsieur Jean Marie Baudoin SWITZERLAND Synapsis Foundation 23, rue Noir AUTISME SUISSE ROMANDE FRANCE Ul. Ondraszka 3 79000 Niort 2, Avenue de Rumine ASSOCIATION LES LISERONS 02-085 Warsawa Tel: + 33.549.24.14.87 CH - 1005 LAUSANNE 78, Grande Rue Saint-Laurent-d’Agny Tel/fax: +48.22.825.77.57 E-mail: [email protected]. Tel: + 41.21.341.93.21 F - 69440 MORNANT E-mail: [email protected] Fax: + 41.21.341.90.79 Tel: +33.4.78.48.38.90 Website: www.synapsis.waw.pl A.T.G.D.P.A. - AUTISME 64 E-mail: [email protected] Fax: +33.4.78.48.71.97 Mairie d’Arraute Website: www.autimse.ch UKRAINE F-64120 ARRAUTE-CHARITTE E.D.I. FORMATION AUTISM SOCIETY OF UKRAINE Tel: + 33.5.59.65.40.14 UNITED KINGDOM 21, Avenue Cévoule 30, New Mill Road, Thougsbridge (near AUTISM INITIATIVES F- 06220 GOLFE JUAN Holmfirth) DIALOGUE AUTISME 7, Chesterfield Road Tel: + 33.4.93.45.53.18 UK - WEST YORKSHIRE HD7 2SH BP 248 UK - CROSBY LIVERPOOL L23 9XL Fax: + 33.4.93.69.90.47 Tel: + 44.1.484.681.471 45162 Olivet Cedex Tel: + 44.1.51.330.95.00 E-mail: [email protected] E-mail:[email protected] Tel: +33 02 38 66 34 75 Fax: + 44.1.51.330.95.01 Website: www.autisme-formation.net Fax: +33 02 38 66 34 75 E-mail: [email protected] E-mail : dialogue-autisme@voilà.fr Website: www.autisminfo.org U.N.A.P.E.I. 15, Rue Coysevox HUNGARY DEVON & CORNWALL F - 75876 PARIS Cedex 18 MÁS FOGYATÉKOS GYERMEKEKÉRT Sterling Court, Truro Hill, Penryn, Tel: + 33.1.44.85.50.50 ALAPÍTVANY Falmouth Fax: + 33.1.44.85.50.60 Móri út 16 UK - TR10 8AR CORNWALL E-mail: [email protected] H-8000 Székesfehér vár Tel: + 44.1.326.37.1000 Website: www.unapei.org E-mail : [email protected] Fax: + 44.1.326.37.1099 Site internet : www.autizmus.org E-mail: [email protected] HUNGARY A.F.R.G. AUTISM ANGLIA Delejutca 24-26, Mailbox:1480 ITALY Century House – Riverside Office Center H - 1089 BUDAPEST FONDAZIONE CLARA FABIETTI North Station Road, Colchester Tel: + 36.1.210.43.64 via Spartaco, 30 UK-C01 1RE Essex Fax: + 36.1.314.28.59 I - 20135 MILANO UNITED KINGDOM E-mail: [email protected] Tel: + 39 02 5412 7248 Tel: +44 (0) 12 06 577678 E-mail: [email protected] Fax: + 44 (0) 1206 578581 ICELAND E-mail: [email protected] Umsjonarfelag einhverfra ANGSA-LOMBARDIA onlus Website : www.autism-anglia.org.uk Haaleitisbraut 11-13 Viale Lunigiana 40 IS - 108 Reykjavik I-20125 Milano E.S.P.A. tel: +354 562 1590 Tel: + 39-02-67.49.30.33 6-7 The Cloisters E-mail: [email protected] Fax: + 39-02-67.38.73.33 Tyne & Wear Website: www.einhverfa.is E-mail: [email protected] UK - SUNDERLAND SR2 7BD Website: www.angsalombardia.it Tel: + 44.1.91.510.2412 ITALY Fax: + 44.1.91.563.7711 A.P.A.M.A. c/o P.A.M.A.P.I. Scuola ‘Amerigo PORTUGAL H.A.S. Vespucci’ A.P.P.D.A.-Lisboa 1634 Parkway, Solent Business Park, Via Bolognese, 238 Rua José Luis Garcia Rodrigues Whiteley, Fareham I - 50139 FIRENZE Bairro Alto da Ajuda UK-HAMPSHIRE PO15 7AH Tel: + 39.05.54.00.594 P - 1300-565 LISBOA Tel: +44.1.489.880.881 Fax: + 39.05.54.00.594 Tel: + 351.21.361.6250 Fax: + 44.1.489.880.890 E-mail: [email protected] Fax: + 351.21.361.6259 E-mail: [email protected] E-mail: [email protected] Website: www.has.org.uk A.P.R.I. Website: www.appda-lisboa.org.pt C/o ANFFAS Via Rasi, 14 Autism N.I. (PAPA) I - 40127 BOLOGNA SPAIN Donard, Knockbracken Healthcare Park, Tel: + 39.051.24.45.95 AUTISMO GALICIA Saintfield Road Fax: +39.05.124.95.72 Rua Home Santo de Bonaval no 74-bajo UK - BELFAST BT8 8BH E-mail: [email protected] E - 15703 SANTIAGO DE COMPOSTELA Tel: + 44.28.90.401.729 Tel: + 34.981.589.365 Fax: + 44.28.90.403.467 MACEDONIA Fa : + 34.981.589.344 E-mail: [email protected] Macedonian Scientific Society for Autism E-mail: [email protected] Website: www.autismni.org (MSSA) Website: www.autismogalicia.org Institute of Special Education and Autism. West Midlands Rehabilitation, APNA-GRANADA 18 Highfield Road, Faculty of Phylosophi Bull. Krste Paseo de Ronda, 96-2 , C Edgbaston, Birminghan Misirkov b.b. E - 18004 GRANADA UK - B15 3 DU 1000 Skopje Tel: + 34.95.826.17.90 Tel: + 44.121.450 7575 Republic of Macedonia Fax: + 34.95.825.02.04 Fax: + 44.121.450 7581 Tel. +389-2-3116-520 (Ext.234) Website : www.autismwestmidlands. Fax: +389-2-3118-143 FUNDACIO CONGOST AUTISME org.uk [email protected] Ronda del Carril 75 E-mail: [email protected] Website: www.mssa.org.mk 08530 - La Garriga - Barcelona - Spain Tel: +34-93-871.47.57 MOROCCO Fax: +34-93-871.48.02 ASSOCIATED A.P.A.E.I. E-mail: [email protected] MEMBERS Rue 9 Avril - Maârif Website: www.autisme.com CASABLANCA Tel: + 212.(0)5 22.25.81.43 NUEVO HORIZONTE BELGIUM Fax: + 212.(0)5 22.25.57.11 Avda de la Communidad de Madrid, s/n OPLEIDINGSCENTRUM AUTISME E-mail: [email protected] E - 28230 LAS ROZAS DE MADRID Plantin en Moretiuslei 12 Tel : + 34.91.637.74.55 B - 2018 ANTWERPEN