N 52o 65 June 2016 English Edition

Autism - Europe

Our campaign: Respect, Acceptance, Inclusion “On the High Seas”: A film to promote the inclusion of children with Jon Spiers, Chief Executive of , on the report denouncing early death among autistic people Adam Bradford, self-advocate and Queen’s Young Leader 2016: “I hope this recognition inspires other young autistic people to reach their goals” Autism-Europe’s 11th International Congress: Keynote speakers announced

Published by Autism-Europe Afgiftekantoor - Bureau de dépôt : - Ed. responsable : Z. Szilvasy

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 E-mail: [email protected] Website: www.autismeurope.org SUMMARY Activities - World Autism Awareness Day campaign 2016...... 3 - Autism-Europe’s Annual General Assembly 2016 in Cagliari, Italy ...... 7

News & Features - The “On the High Seas” project ...... 8 - Premature mortality among persons with autism. Interview with Jon Spiers, Chief Executive of Autistica ...... 10 - App “Oral Health – SOHDEV” improving oral health Dear friends, for people with autism...... 12 It is with great pleasure that we present this latest edition - Interview with Adam Bradford, self-advocate of our LINK magazine, which offers an overview of Autism- and Queen’s Young Leader 2016 ...... 13 Europe’s recent activities as well as news from a range - Keynotes speakers announced for Autism-Europe’s th of different stakeholders in the world of autism. In this 11 International Congress ...... 14 issue, you will be able to get to know our new member - The “Eight Points” project ...... 15 associations. We would like to warmly welcome these - Gautena announced winner of the European Citizen Award...... 17 new members and express our happiness at seeing our - ARAPI’s 11th Regional Seminar “Autism and adulthood. network continue to expand and become enriched with From clinic to intervention” ...... 17 new approaches and perspectives.

This issue will take a look back over our “Respect, New members Acceptance, Inclusion” campaign, launched on World - Lietaus Vaikai, Lithuania ...... 18 Autism Awareness Day, April 2. Through this campaign - Autism Today, Bulgaria…...... 19 we are encouraging the general public to get to know - JiM Foundation, Poland ...... 20 autism better and to work together to create a more - Qudurati Centre, Saoudi Arabia ...... 21 inclusive world where everyone can participate fully. This - members List ...... 22 aim goes hand in hand with the principles outlined in the United Nations Convention on the Rights of Persons with Disabilities, and echoes UN Secretary General, Ban Ki-moon’s call for more neuro- Collaborators diverse societies. Editorial Committee: Aurélie Baranger A neurodiverse society is made rich by the individual strengths and diversity its Zsuzsanna Szilvasy Evelyne Friedel members have to offer. With this in mind, we interviewed Adam Bradford who Pietro Cirrincione was recently honoured by the Queen of for his work as a social entrepre- Harald Neerland Maria Wroniszewska neur. He too calls for greater understanding and support for people on the autism Claude Schmit spectrum in order to bring about improvements in quality of life. Marta Roca Writing, editing & coordination: We will also be exploring the serious issue of premature mortality among persons Cristina Fernández with autism. Autistic people pass away on average 16 years earlier than their Haydn Hammersley counterparts. It is essential to ensure continued cooperation in Translation: researching solutions to promote equal opportunities, as well as to mobilise public Magali Vlayen authorities to better respect the rights of persons with disabilities. Layout & Printing: mmteam sprl - +32-495-52-32-92 - Frédéric Maigret

How can we live a happier and healthier lives in which all people’s rights are Cover: respected? This will be the key question raised during our International Congress, Marco and his mother, participants in the “In Alto Mare” (On the High Seas) project, which aims to produce a documentary-film to promote the inclusion of children which will take place from the 16 to the 18 September in Edinburgh (UK). We hope with autism and their families. Photo from Diversamnte Onlus for Autism-Europe. you will join us as we come together to share knowledge and experiences, and to Autism-Europe jointly face the common challenges ahead of us. Rue Montoyer 39 • B-1000 Bruxelles • Belgique Tél.: +32-2-6757505 We very much hope you enjoy reading this edition, Fax: +32-2-6757270 E-mail: [email protected] Site Internet : www.autismeurope.org

Account number: Zsuzsanna Szilvasy Aurélie Baranger Banque BELFIUS : IBAN : BE21 0682 0816 9303 / BIC : GKCCBEBB President Director

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Published with the support of the DG EMPL- Directorate-General for Employment, Social Affairs and Inclusion of the European Commission, under the European Community Programme- Rights, Equality and Citizenship.

Pour la diversité

Contre les discriminations

The information contained in this publication does not necessarily reflect the views or opinion of the European Commission. Activities ©Autism-Europe

Banner for Autism-Europe’s World Autism Awareness Day campaign 2016

Pass the baton to promote the respect, acceptance and inclusion of people with autism! On World Autism Awareness Day (April 2nd), Autism-Europe launched its 2016 campaign focusing on the theme “Respect, Acceptance, Inclusion”. This slogan was selected by its members, shifting the focus from mere “awareness” to “acceptance” of autism, and conveying a positive message about autism.

During the long-running campaign, people are invited to raise prevent inclusion. To include people with autism, society must awareness on social media and during events by symbolically show acceptance. This requires respecting the diversity of those passing a relay baton to promote greater inclusion and partici- around you and accepting them for who they are. The notions pation of people with autism in society. This symbol was chosen of respect, acceptance and inclusion are thus intrinsically linked. because, as well as embodying an act of acceptance and inclu- sion, through its reference to sport the relay baton highlights The campaign is based on the social model of disability and the strength that comes from working together and complemen- has a strong rights-based approach, recalling the principles of ting each other. the United Nations Convention on the Rights of People with Disabilities to trigger the conditions for an inclusive society. This One of the biggest barriers faced by people on the autism is reflected in the campaign manifesto, which outlines Autism- spectrum is the discrimination they experience in many fields of Europe’s call for action to policy-makers. life. It often stems from a lack of understanding about what it really means to be autistic. Attitudinal barriers, stereotypes and The closing of this long-running campaign, and Autism-Europe’s prejudices hamper the participation of autistic people in society. 11th International Congress, will coincide with the Paralympic games taking place in Rio de Janeiro, Brazil. The visual identity of It is time for society to gain a better understanding of autism the campaign, with the relay baton symbolising respect, accep- to remove the barriers that autistic people face, and which tance and inclusion, goes hand in hand with the theme of sport.

Page 3 Building momentum throughout Europe Autism-Europe’s members throughout Europe have already taken the baton and passed it on for respect, acceptance and inclusion. People from every corner of the continent joined forces to spread the campaign’s message. ©Autism-Europe

People from every corner of Europe joined forces to spread the campaign’s message. In the collage above (from left to right and from top to bottom), there are examples of supporters from Spain, Serbia, Croatia, Italy, Austria, Belgium, Malta, FYR of Macedonia, Cyprus and Slovakia.

The power of social media networks

To help promote the campaign, Autism-Europe set up a Thunderclap. Thunderclap is a programme that allows campaign organisers to register people’s messages of support and to

pre-programme them to be released simultaneously via social España ©Autismo media on a given date. In the case of the “Respect, Acceptance, Inclusion” campaign, all of the messages became visible on the morning of the 2 April. With the help of the Thunderclap, the campaign message achieved a total reach of over 207,000 social media users.

Call for action extended to decision- makers

Autism-Europe invites policy-makers at the EU and Member State Players from FC Bayern Munich such us Mario Götze, Thomas Müller, Robert Lewandowski level to take action to pave the way for a more inclusive and neuro- and Xabi Alonso (among others) and coach Josep Guardiola joined the campaign diverse society. Following the successful adoption of the Written by passing the baton. Declaration on Autism by the European Parliament in September Famous supporters 2015, Autism-Europe is now calling on the European Commission and EU national governments to begin the next leg of the relay, A wide array of public figures as well as people from the following demands by the European Parliament to initiate a European world of sport have already participated in the campaign. Strategy for autism. A strategy will be crucial for providing a coherent and holistic approach to supporting persons with autism and their Personalities such as the players of FC Bayern Munich families, as well as fostering the full respect of their rights. and Club Atlético de Madrid, the acting Prime Minister of Spain Mariano Rajoy, the Italian Minister of Health This strategy would respond to the needs of persons with autism, Beatrice Lorenzin and the First Lady of Malta, Michelle many of whom face huge barriers in many areas of life, not least due Muscat, have all publicly supported the campaign. to lack of support and understanding in society.

Page 4 Autism - Europe The European Commissioner for Employment, Social Affairs, Skills and Labour Mobility, Marianne Thyssen publicly showed her support by promo- ©Autism-Europe ©Autism-Europe ting our campaign on her social media pages.

Furthermore, Members of the European Parliament (MEPs) from all over Europe passed the baton to show their support for the respect, accep- tance and inclusion of people on the . Marianne Thyssen, European Commissioner for Employ- Over 20 MEPs from different European countries supported ment, Social Affairs, Skills and Labour Mobility. the campaign. In the picture, MEP Helga Stevens (Belgium) and MEP Marek Plura (Poland).

Stereotypes and prejudices are also a major barrier to accessing This reasoning is equally central to the calls for action in Autism- the labour market, where discrimination starts as early as the Europe’s campaign manifesto. recruitment phase. There appears to be a lack of awareness of the fact that people with autism can be highly skilled and qualified, The manifesto addresses a list of pressing issues that decision- as well as extremely employable, but may need some reasonable makers in Europe must tackle to ensure autistic people are given accommodation in order to reach their full potential. the opportunities to thrive, not least the push for the creation of a European Strategy for Autism as laid out in the Written Nowadays, between 76 and 90 per cent of adults with autism in Declaration on Autism passed by Members of the European Europe are unemployed compared with 11.5 per cent of adults Parliament in 2015. without autism1. As UN Secretary General Ban Ki-moon pointed out in his message for World Autism Awareness Day 2016, shunning people with autism from society is not only a “violation of human rights” but also a ”waste of human potential”.

World Autism Awareness Day Observance at the UN

On the 1st of April, the UN held its 2016 Observance of

World Autism Awareness Day. Key to the day’s proceedings ©UN was the keynote speech given by Steve Silberman, author of “NeuroTribes: The Legacy of Autism and the Future of ”.

In his speech Mr Silberman underlines the fact that autistic people have been part of the fabric of humanity for a very long time, often diagnosed under other conditions, and that it is time to move beyond shallow awareness of autism towards true appreciation of autistic people and respect for their humanity. Screenshot of the UN Secretary General Ban Ki-moon’s video message disseminated ahead of the 2016 World Autism Awareness Day Ahead of World Autism Awareness Day the UN Secretary General Ban Ki-moon also made an address in which he neurodiverse societies that harness the human potential called on governments around the world to foster more of all individuals and respect the rights of autistic people.

1 Autism-Europe, (2014). Autism and Work: Together we can. Available at : http://www.autismeurope.org/files/files/report-on-autism-and-employment-en-online-updated.pdf

Page 5 ©NAS

Celebrating World Autism Awareness

Screenshot of the video produced by the the National Autistic Society (UK) Day across Europe as part of their campaign called “Too Much Information” In 2016, associations across Europe were active in raising awareness of autism and the rights of people on the autism spectrum. In parallel with the European campaign “Respect, Acceptance, Inclusion”, numerous activities took place throughout the continent on the occasion of World Autism Awareness Day.

One such example was Autism-Europe member the National Autistic Society (UK), who released a video the day before World Autism Awareness Day as part of their own campaign called “Too Much Information”. The video puts viewers (over 40 million by May 2016) in the shoes of a child with autism experiencing sensory overload to make them understand the overwhelming impact it can have on a person with autism, with reactions that could be interpreted as a child being naughty.

More information and materials of the campaign: www.autismeurope.org/activities/world-autism-awareness-day

1 4 ©Stadt Salzburg/Johannes Killer ©Stadt © Federação Portuguesa De Autismo (FPDA) Autismo De © Federação Portuguesa

2 5 © Autism Anglia Autism © ©S.P.O.S.A Bratislava ©S.P.O.S.A

3 6 ©Autisme la Garriga la ©Autisme © Fondation Autisme Luxembourg (FAL) Luxembourg Autisme © Fondation

1. In 2016, Rainman’s Home linked the “Respect, Acceptance, Inclusion” campaign with the “Light it 4. In 2016, the Federação Portuguesa de Autismo, as well as supporting the “Light it Up Blue” initiative, up blue” initiative, which gains a growing number of supporters throughout Austria each year. In the focused its efforts on raising awareness among children. Thousands of schools across Portugal took picture, the statue of Mozart in Salzburg lit up in blue. part in celebrating WAAD. In the picture, a human blue ribbon created by the Agrupamento Alexandre Herculano, in the city of Porto. 2. Autism Anglia, from the UK, held two awareness-raising events for WAAD. The first was their annual Silly Sock Day (in the picture) held at the end of March. The second was the Round Anglia Chase on Saturday the 5. In Slovakia people with autism, their families and friends gathered on a walk around Devin Castle to 2nd of April. Both were inclusive events for anyone who wanted to get involved, with the aim of raising as mark WAAD. The walk was organised by S.P.O.S.A, Bratislava. For this occasion, everyone was dressed much awareness about autism as possible. in blue and held blue balloons. The castle of Bratislava was also lit up in blue.

3. The Autisme Luxembourg Foundation released more than 500 blue biodegradable balloons, they 6.Inauguration of the mural created by Sixe Paredes (an internationally recognised artist) with the launched the hot-air balloon Superjhemp together with other mini hot-air balloons and they followed support of people with autism who live and work at Autisme La Garriga. the “Light it up blue” initiative alongside other activities carried out during WAAD. The Mayor of Luxem- bourg City, Lydie Polfer, was in attendance to make the opening speech for the occasion.

Page 6 Autism - Europe Attendees enjoyed the sightseeing tour of Pula and Cagliari prior to the meetings. ©André Weisgerber ©André

Annual General Assembly: Autism-Europe’s network of members continues to grow Following Autism-Europe’s (AE) most recent Annual General Assembly and Council of Administration meetings, held in Pula (Sardinia, Italy) on May 6 and 7 2016, four new organisations from three new countries have joined our network of members. The meetings, attended by more than 50 members, were hosted by the Diversamente Onlus Association (Italy) and were accompanied by a study visit to the Regional Centre for Autism (“G. Brotzu”- Hospital) in Cagliari.

The associations Rain Children (Lithuania), Autism Today implementation of the United Nations Convention on the Rights (Bulgaria), the JiM Foundation (Poland) and the Qudurati Centre of Persons with Disabilities (UNCRPD) by the CRPD committee. (Saoudi Arabia) were welcomed as new AE members during Furthermore, 2015 saw the European Parliament’s adoption of the its latest General Assembly (see pages 18 to 21). During these Written Declaration on Autism with the participation of AE. meetings, representatives of European autism organisations During the meetings, AE members also learned more about the gathered to learn more about recent developments with regard to European cooperation in which AE is involved as well as the 2015 autism at the EU level and to discuss and vote on issues related to World Autism Awareness campaign “Autism. Stop discrimination”. AE’s activities and membership. 2016 will continue in similar fashion, with the addition of two Participants had the opportunity to share experiences on topics new European projects (TRASE and DE-ENIGMA), the “Respect, such as the quality of autism services and good practices in terms Acceptance, Inclusion” campaign (see page 3 to 6) and Autism- of awareness-raising. Highlights of the meetings also included the Europe’s 11th International Congress in Edinburgh (see page 13). (re)election of members of the Council of Administration, which See all the pictures of these meetings on AE’s Facebook page: now consists of 37 members from 24 countries, and the decision www.facebook.com/autismeurope.AE/ to hold AE’s 12th International Congress in Paris in 2019, hosted by Autisme France. From an advocacy perspective, over the past year AE has been actively voicing the needs of people with autism in the framework of the monitoring process of the European Union’s Study visit in Cagliari Participants of the meetings could also learn about local services Quality of services for people with autism available to people with autism in Sardinia during a conference held in the Regional Centre for Autism (“G. Brotzu”- Hospital) in Maria Wroniszewska, secretary general, led a session aiming Cagliari. The Centre’s executive director Dr. Giuseppe Doneddu, at elaborating a framework together with the local authorities, Prof. Roberta Fadda (University document on the quality of of Cagliari), Marco Espa (National President of ABC Association) services for people with autism, and Nicola Pintus (national President of the “Progetto Filippide including the promotion of Nazionale”) presented some facts, figures, research and on-going international guidelines for projects in Sardinia, from different perspectives. intervention. The importance of wording (from a rights-based AE member and host of the meetings, Diversamente Onlus, and inclusive perspective) was invited participants to discover their region, including a visit one of the things highlighted to the Archeological Area and Coltellazo Tower in Nora, the during this session. One of the Archaeological Museum and the city center of Cagliari. AE group suggested to replace extends its sincerest thanks to Diversamente Onlus for their the following words for their efforts in order to make the meetings successful and enjoyable counterparts to the right. for everyone involved.

Ari Ingolfsson, from the Icelandic Autistic Society, mentioned that some terms often get over-used and sometimes they are not the most suitable ones available. We could try exchanging the following words for their counterparts to the right. © Autism-Europe © Autism-Europe ©

Participants of AE’s General Assembly during a voting session. Self-advocates were also represented in these meetings by Monique Post, Pietro Cirrincione (AE’s vice-president) and Jan Verhaegh (from left to right).

Page 7 Film “On the High Seas” to promote inclusion of children with autism In an attempt to foster the inclusion of people with autism, Autism-Europe member the Diversamente Onlus association leads the project In Alto Mare (English title “On the High Seas”), a documen- tary-film about a cruise through the Mediterranean to make autism more visible in our society. ©In Alto Mare Alto ©In

The main characters

To shoot this film, they travelled on a cruise across the Mediterranean, from Italy to France, Spain and Malta. In the picture, the ship docked in the port of La Valletta.

“The more people get to know autism, detail and anecdote of the trip. During this the more autistic people and their families seven-day cruise, the film crew shot a total can feel accepted”. It was with this motto of 30 hours of footage and took more than in mind that in 2015 Diversamente Onlus 550 photos of those on board. and other two Sardinian associations embarked on the adventure of producing The film a documentary about a cruise for children and young people with autism and their As a second step in the project, the film- families to promote inclusion and accept- documentary will be edited. The film crew ance. Relying on strong communication aims to produce a real documentary that and crowdfunding campaigns, the film uses the narrative of a novel. The topic of crew is currently working on the creation autism will be addressed with humor and

©In Alto Mare Alto ©In of the film which will relive the time spent simplicity and will go past the sense of on the cruise to spread the message that pity that films about disability often have. From top to bottom: “people with autism and their families can Through the story of this journey, the film Federico, Angelica, Marco, Danilo do the same things as any other family, will show the adventures and adversities Through the story of this journey, even go on holiday”. that autistic people face on a daily basis, the film will show - with humor Participants in this initiative, which the unconditional love of the families for and optimism - the adventures took place in April 2015 across the their children and the great challenges that and obstacles that autistic people Mediterranean, had the opportunity to families touched by autism are confronted face on a daily basis, the uncondi- visit Italy (Cagliari, Rome and Savona), with when seeking a ‘normal’ life. tional love of the families for their France (Marseille), Spain (Barcelona) and children and the great challenges Malta (La Valetta). Angela (8), Marco (9), that families touched by autism are The film aims to sensitise as large an confronted with when seeking a Federico (13), Danilo (31) and their families, audience as possible to the problems “normal” life. all of whom took part in the cruise, will be experienced by people with autism and the film’s focal characters. It is through their families, and to their needs for inclu- them that the audience will discover every sion. For these families, even a simple

Page 8 Autism - Europe ©In Alto Mare Alto ©In

The artist Miguel Gallardo, author of the movie “Maria’s Journey” and of the documentary “Maria and I”, welcomes the crew at an art exhibition in Barcelona. vacation can trigger anxiety and fear: donating is still possible on the dedicated the thought of possible difficulties and project’s website. Many different types of The partnership misunderstandings can lead families with rewards are foreseen for those who decide Diversamente Onlus, an organisa- autistic children to avoid doing what for to fund the project: postcards sent by the tion consisting of parents, family a “normal” family would be a thing of children from the ports touched during the members, professionals and people journey, T-shirts, posters, a DVD of the film joy and relaxation. It does not seem to who have an interest in autism in and a lot more. There is even the possibility be asking a lot to want society to take general, is the project’s lead partner. of becoming official producers of the film. the needs of autistic people into consid- Furthermore, InMediAzione, a social To complete this co-financing, the second eration, and yet it often appears the world advancement organisation with phase of the project (including post produc- does not understand the requirements of the goal of creating audiovisual tion, promotion and dissemination) is people on the spectrum. training programmes focused on also supported by the Banco di Sardegna subjects strongly rooted in social Foundation in addition to the support of the The documentary aims to contribute and wellbeing, and Marraiafura, a group association InMediAzione. give voice to all those families, and convey which for more than five years has the optimistic message that “by joining been dealing with topics related to More information www.inaltomare.org forces it is surely possible to find the route communication for social and active again, even on the high seas!” participation and sustainability, have This second stage of the project foresees joined forces to carry out the “On not only the audio-video postproduction The High Seas” project. and advertisement, but also the film’s distri- ©In Alto Mare Alto ©In bution and promotion at a national and international level. This documentary will be sent to regional, national and international cinema festivals dealing with disability issues, family, childhood and sustainable tourism (for instance the International Film Festival on Disability in Cannes – France, the PerSo Perugia Social Film Festival – Italy, or the Nouvo Cinema Italiano Film Festival in Charleston - United States).

The crowdfunding

To fund the shooting, a fundraising campaign has been launched, aiming at achieving a budget that will allow for this film to become an unforgettable experi- ence. Despite having collected more than 3,000EUR for this stage of the project, Transnational links: meeting with Omar Farrugia, President of the Autism Parent Association in Malta – member of Autism-Europe

Page 9 Jon Spiers, Autistica’s chief executive “Many autistic people will never see their 40th birthday” According to the report “Personal Tragedies, Public crisis”, published in March 2016 by autism charity Autistica, there is a mortality crisis in autism. Autism-Europe spoke with Jon Spiers, Chief Executive of Autistica, to discover why autistic people die on average 16 years earlier than the neurotypical population.

in autism (carried out by researchers from the Sweden’s Karolinska Institutet and funded by Stockholm County The facts: Council, Karolinska Institutet and the • Autistic people die on

©Autistica Swedish Research Council) with what we already knew about the poor health average 16 years earlier than outcomes of autistic people in the UK the general population and around the world. • Autistic adults with a learning The data is stark: autistic people die on average 16 years earlier than the disability are 40 times more typical population, with those who also likely to die prematurely have a learning disability dying more due to a neurological condi- than 30 years younger than the norm tion, with epilepsy being the (…). I hope that by bringing this infor- mation to their attention in this report, leading cause of death. we can all work together to be aware of the risks, and to pressure government, • People with autism were 7.55 funders, industry and health services times more likely to commit to tackle the issue. suicide. Jon Spiers AE: Does the study show that people with autism will definitely have a • Autistic adults without a shortened life? Autism-Europe: Could you say a few learning disability are 9 words about the importance of these JS: The figures we have are all at times more likely to commit findings for the autism community? population level and are indications suicide of risk. Many autistic people will live Jon Spiers: Our research confirms long lives but it is clear that this is not • Autistic people requiring high the true scale of the hidden morta- the case for many others. The Swedish levels of support on average lity crisis in autism. Autistica’s report, study was very large, of high quality “Personal Tragedies, Public crisis”, and is corroborated by multiple smaller passed away before they followed recent findings from a very studies from around the world, so the reached 40, at 39.52 years. large Swedish study on early death evidence base is strong. ©Autistica

Photo and quote from Autistica’s founder Dame Stephanie Shirley, who lost her autistic son with epilepsy and now fronts the campaign.

Page 10 Autism - Europe ©Autistica

AE: Do we have a good enough understanding of what causes the increased chances of death for people with autism? Taking into account that we do not know exactly what causes autism, it is harder to see what the possible causes could be. JS: We know that the three leading drivers of early death in autism are epilepsy, suicide and heart disease but we do not yet know why they are so common and whether they are diffe- rent in autistic people. We also know that autistic people are at heightened risk of dying younger from virtually every cause of death. Because of the breadth of the autism spectrum and of the range of co-occurring condi- tions that autistic people experience, research is challenging. But unders- tanding the links between these condi- tions could help us learn a lot more about what autism is, and importantly how we can support individuals and their families to address the difficulties that most affect their everyday lives. Cover of the report “Personal tragedies, public crisis”. AE: Research indicates that 70 per cent of autistic individuals have a mental health issue such as anxiety between autism and poor mental specific problem of premature death or depression, and 40 per cent have health. It is likely that environmental among people with autism or with at least two mental health issues. Is factors also play a part, such as lack any other brain condition? there any effective tailored mental of employment, social exclusion, health treatment or related service bullying, and experiencing stigma. JS: There is little existing good practice for meeting the needs of people with specifically aimed at reducing morta- autism? AE: What can autistic people, their lity in autism, in part because the sheer families and society do to avoid these scale of the crisis has only recently risks? been revealed. Autistica is leading the Epilepsy, which commonly JS: Awareness and preparedness are way in lobbying for change in this area, to make health outcomes for autistic co-exists with autism and key. Being aware of the greatest risks of early death is important: recogni- people an international priority. Efforts affects up to 40 per cent of sing early signs of epilepsy, anxiety have been made in other fields such as autistic people, is a potential and depression and seeking support as learning disability and severe mental factor in reduced longevity. early as possible. Knowing that these illness which could be rapidly assessed Experts also point to bullying, may present themselves differently in and retooled for use in autism. those with autism is key for families, AE: Based on the results of the study, social issues and side effects care providers and healthcare profes- what are your recommendations? from medication as contribu- sionals. ting factors. JS: We need to raise awareness of this Society also needs to become more hidden crisis among policymakers and accepting of the differences in autistic people to give them the greatest healthcare providers, sparking local, chance to work, and build relationships, regional, national and international JS: There are some examples of good both of which will help dramatically responses. practice in mental health services, but with their mental health. Ultimately, we know that autistic people’s needs We need to ensure information and we need more research to understand are often very poorly met. There has services aimed at treating the condi- how we can best diagnose and support been very little research into mental tions with the highest mortality risk are those most at risk of early death and health in autism, in both basic and autism-appropriate and can actively use this knowledge to inform policy applied science. As a consequence, we reduce premature mortality in autism. do not know why people with autism makers and service providers. To do this, we need to rapidly build on are at such increased risk of mental AE: Do you know if there are any our research in this area and develop health problems and suicide, although policies, strategies or examples of evidence-based policies, support research suggests biological and social good practice already in place (in services and treatment to urgently factors may play a role in the link Europe or elsewhere) to tackle this reduce premature mortality.

Page 11 New app helps people care for their teeth and prepare for dental visits The app “Oral Health – SOHDEV” from the Autism and Oral Health programme (PASO), designed by the SOHDEV association, will allow children and adolescents with autism and their families to access a set of communication tools and mediation to help them integrate oral hygiene into their daily routine and prepare for dental visits.

The Autism and Oral Health programme aims to offer a suitable course of action for improving oral health (counse- ling, prevention, screening, education on health, healthcare, follow-ups) for people with autism and with other Pervasive Developmental Disorders (PDD).

This intuitive and interactive application, comprised of images and sounds, can now be downloaded for free on Android and is currently available in French. The iOS version will be available at the end of the second quarter of 2016. Some tools can be printed.

The SOHDEV Association (French acronym from Santé Orale, Handicap, Dépendance Et Vulnérabilité) created and imple- mented the Autism & Health Oral Programme (PASO) for children and adolescents with autism. Different stages of specific guidance, recommendations and instructions are ©Google Play available to families and professionals to facilitate long-term care, bring the dental care of persons with autism and PDDs up to a sufficient standard, and make oral health care an accepted part of day-to-day life.

The programme offers a set of tools for communication and mediation to integrate or enhance the presence of oral hygiene in daily life and to facilitate visits to the dental office (with the help of a liaison book, pictograms, a soundtrack of dental office sounds, comic strips and educational films). The PASO programme’s communication tools have two complementary objectives:

• To improve oral hygiene The app includes the following communication tools: pictograms, comics, sound tracks, useful tips, tutorials and contacts. The Autism & Oral Health Programme allows children with autism to accept or improve daily activities for maintaining oral hygiene: brushing calendar, pictograms, educational films, All this helps support the independence of people with autism or with other PDDs, and provides technical assistance for: etc. • Communication • Social scenarios • And to prepare dental visits • Autonomy • Somatic care • Social interaction • Prevention of oral health Tools have been designed to prepare people for dental visits • Educational programmes problems and give them time to become familiar with the environment of the dental office: soundtrack of the dentist’s instruments, pictograms on dental equipment

Download the app at: https://play.google.com/store/apps/details?id=fr.enovstudio. sohdev&hl=fr ©Santé Orale, Handicap, ©Santé Vulnérabilité Dépendance Et

In addition to the app, a range of communication tools and mediation (pictograms, sound tracks with noises of the tools used by dentists, brushing calendar, etc.) have been created, aiming at helping children prepare their visits before going to the dental office.

Page 12 Autism - Europe Adam Bradford, self-advocate winner of the Queen’s Young Leader Award 2016 “I hope this recognition inspires other young autistic people to reach their goals” Adam Bradford, who contributed to the organisation of Autism-Europe’s 11th Congress through his work with the National Autistic Society (UK) has, at the age of 23, been honoured by Queen Elizabeth II for his work improving the lives of others in the UK.

helps to profile and champion the fact AE: Are you currently working that people with autism can still achieve on anything related to autism - when given the right support. I hope it awareness? ©Salix & CO ©Salix & inspires other young autistic people to AB: Currently I am working with my reach their goals. business partner to design and launch a AE: What challenges do you face magazine run by and for autistic people, in your daily life as a person on the showcasing the positive achievements autism spectrum? of those on the spectrum. It will launch online and I will give autistic young AB: Nowadays I try to use different people real work experience through strategies and behaviour I have learned the business. to get on in everyday life. I unders- tand this is harder to do for some but I think the real barrier you have to break through is the understanding gap. Many The Award is part of The people have heard of autism but hardly Queen’s Young Leaders Adam Bradford any bother to take time to understand the condition or its impact on people. Programme, which cele- Diagnosed with at For me I can over process things, not be brates the achievements of the age of 11, Adam launched an IT able to filter my thoughts and that can young people who are taking social enterprise and set up a mentoring give me a hard time mentally. I have to the lead to transform the and business project in his home town of work hard and have a trusted group of . In his teens, he gained a place friends and coaches who help me get lives of others and making at the Peter Jones Enterprise Academy on with my life day to day. I’m lucky to a lasting difference in their and transformed his project into a social have been entrepreneurial in my career communities. enterprise. He has worked with local and and have a great platform of opportu- national youth organisations, acted as a nities to do things like share my story More information: mentor and supported young people to but I get a lot of support to help keep www.queensyoungleaders.com set up their own ventures. He has also me focused. run campaigns to improve understan- ding of autism, to raise awareness of AE: Tell us about the ‘Look Past the gambling addiction and visited schools, Label’ campaign and other campaigns colleges and prisons to help young you have carried out to raise awareness people turn their lives around. He still on autism. runs his consultancy company and has worked with numerous charities and AB: Look Past the Label was my way youth sector organisations. of telling the world to respect and appreciate difference. I decided to tell Autism-Europe: What does it mean my story and give practical advice to to you and to the autism community parents whose children had just been to receive the Queen’s Young Leader diagnosed with autism. I needed to fill Award? a gap where this practical, lived advice Adam Bradford: The Queen’s Young was missing. There is a lack of unders- Leader Award is an inspiring platform tanding of autism in this country and for me and all of the other winners to across Europe and I wanted to help be able to show other young people bridge that gap. I’m confident enough, how to lead impactful lives. In today’s luckily but sometimes reluctantly, to world we need leaders more than ever, share my story and give people an people who will change the world and insight into how I think and feel. I think challenge things which they feel are not more people should be brave enough right. For me and the other 59 winners to do that. Together we can help to of this prestigious award, this honour bring about greater understanding and is recognition of our commitment to as such greater appreciation for autism. CO ©Salix & social change and for me personally it It is nothing to be ashamed of. Adam Bradford receiving the Queen’s Young Leader Award from the Queen Elizabeth II.

Page 13 Keynote speakers for Autism- Europe’s 11th International Congress in Edinburgh announced The Congress, which will be hosted from the 16 to the 18 September 2016 in the International Convention Centre in Edinburgh, UK, is organised by the National Autistic Society in partnership with Autism-Europe. In this eleventh edition of the Congress, Workshop sessions abstract submissions were linked to the overall theme: “Happy, healthy and • Gina DAVIES, Specialist Speech and empowered”. People on the autism Language Therapist and Sleep Counsellor spectrum, researchers, practitioners, • Dr Wendy KEAY-BRIGHT, Reader teachers and other interested parties have in Inclusive Design, Principal Lecturer submitted their abstracts with the aim Graphic Communication. Cardiff School of exploring a broad range of perspec- of Art and Design with Ann HARBER, tives, both theoretical and practical. Over Some of the European projects in Autistic Adult and Katie NURSE, Key 600 abstracts were received and during which Autism-Europe is currently Worker. Surrey and Borders NHS Trust the selection process value was placed involved will be presented during on robust and well-evidenced knowledge, • Diederik WEVE, Engineer and the congress. A symposium will be including academic research and profes- Autistic Adult. Stichting Autminds, dedicated to the Autism Spectrum sional, personal and collective experience PAS-Nederland, Shell. Disorders in Europe (ASDEU) within the three key topic areas. programme, which aims to research For more information about the congress and autism diagnosis, prevalence and registration, go to: http://www.autism.org.uk/ intervention and to improve care Keynote speakers professionals/conferences/xi-congress.aspx and support for people with autism. The following keynote speakers have Likewise, the Equality and Social already confirmed their participation at Inclusion Positive Parenting (ESIPP) the congress. An updated list will be avail- project and the DE-ENIGMA Project able soon: (aiming at developing a multi- • Virginia BOVELL, Parent and Researcher, modal human-robot interaction Ethox Centre for teaching and expanding social imagination in autistic children) • Gunilla GERLAND, Independent Autism will also be introduced via a poster Advocate and Speaker presentation. • Bo HEJLSKOV ELVÉN, Clinical Psycho- logist • Professor Roy Richard GRINKER, Professor and Chair, Department of Anthro- pology. The George Washington Grants to attend the University Congress offered to 30 participants by the JiM • Dr Wenn LAWSON, Psychologist Foundation • Professor Tommy MACKAY, Director of Psychology Consultancy Services and This year the JiM Foundation offered Professor of Autism Studies. University grants to fund thirty places at of Strathclyde Autism-Europe’s 11th International Congress, as it has done in previous • Professor Liz PELLICANO, Director, years. Fifteen of the grants have Centre for Research in Autism and been awarded to professionals who Education (CRAE). UCL Institute of work with autistic people (thera- Education, University College London pists, academic, support workers, • Dr Peter VERMEULEN, Lecturer and teachers and so on) and the rest have Consultant. Autisme Centraal been awarded to parents, family members and students as well as • Professor Fred R VOLKMAR, M.D., Irving individuals on the autism spectrum. B. Harris Professor of Child Psychiatry, The closing date for applications was Pediatrics and Psychology. Yale School of the 31 May 2016. Medicine, Child Study Center

Page 14 Autism - Europe “Eight points” to harmonise care and support services for people with autism in Hungary The “Eight Points” project, carried out in Hungary between 2013 and 2015, had the aim of facilitating the social integration of people with autism through improving the state of the current care system. ©‘Eight Points’ project ©‘Eight Points’

Des parents donnant des explications et démontrant leur capacité à représenter leurs enfants dans une école primaire ©CUAA ©‘Eight Points’ project ©‘Eight Points’

Starting February 1st, 2013 the strategic objective of the 36-month project was to improve the quality of life of people on the autism spectrum and their families in Hungary by establishing a care and support system covering all areas of need. The ultimate aim was thus to foster conditions for higher standards of living among people with autism, striving for the highest possible level of independence. As well as improving the quality of services available in Hungary, the Eight Points project also sought to increase their accessibility. Project presentation during the X Autism-Europe International Congress In Budapest in 2013. In the long run it was hoped that families affected by autism would learn about service provision and be able to work alongside care providers in order to improve their children’s everyday lives and 3. Developing quality standards and a quality assurance system - employment perspectives. Ultimately people with autism would including proper feedback channels and motivational factors; be empowered and better equipped to reintegrate into the social and labour market. 4. Supporting the care network through the introduction of a quality assurance system (including financial and professional Eight key areas advisory support with the implementation process); As the name suggests, the project was constructed around eight 5. Offering methodological support to the network via a coordi- separate areas of activity: nation centre; 1. Developing a nation-wide network of professionals and 6. Developing a database and an online information resource experts to develop an autism-specific care system. This centre to support service providers; involved the development of training materials, and pilot training sessions for professionals; 7. Supporting people with autism (skill development training);

2. Ensuring that care and rehabilitation services throughout 8. Supporting the families of people with autism (skill develop- Hungary are harmonised and that they all meet quality requi- ment trainings). rements based on professional consensus;

Page 15 Continuous support is often needed by Network, Professional Consulting Network individuals with autism throughout their and Coordination Centre for people with lives. This support can only be effecti- autism. The European Social Fund (ESF) vely achieved with an adequate number is the European Union’s main of professionals who have autism-specific The main results of the project are as instrument for supporting jobs, training. It is also essential that diffe- follows: rent service providers work according to • The creation of quality standards for helping people get better jobs harmonised standards with a scientific seven different services in the care and ensuring fairer job oppor- basis. It was following this logic that the sector; tunities for all EU citizens. ESF eight areas of activity were established. • More than 700 professionals in the financing of EUR 10 billion a year area of health, education and social is improving job prospects for services were trained using the most millions of Europeans, in parti- Outcomes up-to-date methods and information cular those who find it difficult to During the project, as a result of the profes- regarding autism, thanks to the 19 get work. sional activities, a nation-wide network of accredited courses delivered as part specialists, an autism information system of the project; and a database of services were created. • Two online courses were offered to The ESF is not an employment Furthermore quality standards were parents and professionals who were agency – it does not advertise formed to help with the development unable to attend the training sessions jobs. Rather, it is funding tens of of effective and reliable services. These in person; thousands of local, regional and quality standards were introduced and • Three national conferences were national employment-related tested in a number of different services in organised during the lifespan of the projects throughout Europe: the health, education and social sectors. project and were each attended by from small projects run by neigh- 300-500 people; bourhood charities to help local In parallel with the above processes, disabled people find suitable training courses were conducted for • Four autism-friendly events were families of people with autism, as well as organised with more than 60 families work, to nationwide projects professionals working in the field. attending; that promote vocational training • 12 young people with autism parti- among the whole population. The European Social Fund and Hungary’s cipated in a self-advocacy groups Social Renewal Operational Programme, supported by an autism expert. under the New Széchenyi Plan (National More information: Development Programme), decided to More information: http://ec.europa.eu/esf/ grant more than 2.6 million EUR for the www.autizmusiroda.hu establishment of a National Provider ©‘Eight Points’ project ©‘Eight Points’

Family training

Page 16 Autism - Europe Autism-Europe’s member Gautena wins the “European Citizen ©European Parliament ©European Parliament European Citizen’s Prize Award‬ 2016”

The european Parliament awards the Spanish association Gautena for their “level of development of services”, their “international trajectory” and for “fulfill[ing] the European Charter of Fundamental Rights in reference to persons with functional diversity”.

GAUTENA, the Basque acronym for Gipuzkoa Prize for their contribution to European coope- Autism Society, is a not-for-profit parents ration and the promotion of common European association whose mission is to inform and values. The jury, headed by Parliament spread awareness of autism within society, Vice-President Sylvie Guillaume, selected the and to offer appropriate services to people 2016 laureates after a consultation of the 79 with this condition. Gautena and Dr. Joaquín proposals that made it through to the national Fuentes, its scientific advisor, offer daycare juries. This specific application was submitted services, outpatient treatment, housing by Izaskun Bilbao Barandika, Member of the services, informal activities for one’s free time, European Parliament. education and family support for more than 5,000 people. The award ceremony will take place on October 12 and 13, The European Parliament has honoured 50 people and 2016 in the European Parliament in Brussels. organisations from 26 EU countries with this year’s Citizen’s

The ARAPI’s 11th Regional Seminar “Autism and adulthood. From clinic to intervention” to take place in Barcelona The Congost Autisme Foundation and the CERAC are organising the ARAPI’s 11th Regional Seminar, set to take place on October 21 in Barcelona. The ARAPI is a French entity made up of parents of people with autism and professionals, and whose objective is to promote research in the field of autism. ©La Garriga ©La

Barcelona’s CosmoCaixa Auditorium will be the venue for the Seminar

With the motto “Autism and adulthood. From clinic to interven- autism, family members and other interested persons. tion”, the seminar aims to raise awareness of the psychopatho- This is the first time that the event, which will be attended logical characteristics of adults with autism, and intervention by Autism-Europe’s President Ms. Zsuzsanna Szilvasy, will be guidelines in this long stage of the life cycle. Considered to be a organised by a non-French-speaking country. Simultaneous inter- “Health Interest Event” by the Catalan Government’s Department pretation services will be available. of Health, the seminar is aimed at professionals, people with More information: www.arapi-autisme.fr

Page 17 New Members

“Rain children” unites, educates and advocates for people with autism in Lithuania

The Rain Children association (Lietaus vakai in Lithuanian) was created as an initiative of 31 parents of children with autism three years ago. Nowadays it welcomes more than 300 members and is Lithuania’s leading NGO of parents of people with autism. What began as a network for exchanging Wide range of activities information between parents and families is today a fully-fledged NGO making a The different activities organised by Rain significant impact in areas such as autism Children are key to raising awareness and Vaikai ©Lietaus awareness, advocacy at local and national fostering policy change, as they promote level and the organisation of socio-cultural a different approach to autism that allows activities for children with autism and their physicians to give accurate diagnoses, and families. Despite the fact that the associa- provide relevant care and continuous support tion was born as a parent organisation, to people with autism. In order to improve it welcomes applications from anyone the quality of life of people with autism as a interested in or dealing with autism whole, the association runs activities such as: spectrum issues. • Organising different awareness-raising events, summer camps and leisure activi- First steps in autism ties for families, seminars for parents and professionals, support groups on social advocacy media and mutual support meetings in

different cities throughout Lithuania. From left to right and from top to bottom: A child enjoying one of the The main goal of the Rain Children activities during a summer camp; Activities during the WAAD in Vilnius, • Celebrating World Autism Awareness association is to advocate for the rights 2014; Parents attending a training about educational activities; Partici- Day (WAAD). This activity has received pants on a summer camp; and NGO’s Christmas charity fair sponsored and interests of people with autism in by the President of Lithuania, Dalia Grybauskaitė. endorsement from ambassadors such Lithuania. In this regard, one of its great as the President of Lithuania Mrs. Dalia achievement occurred in 2015. Before Grybauskaite in 2014, and the UN Special The Rain Children Association this date, diagnosis of autism in Lithuania Rapporteur on health issues for Lithuania, (Lietaus vaikai) is a full could only be given for a person under Mr. Dainius Puras. eighteen years of age. Once this person member of Autism-Europe. turned eighteen, the autism diagnosis had • Participating in strategic coalitions More information: to be replaced in their medical history with other Lithuanian NGOs that share www.lietausvaikai.lt by a different diagnosis, in most cases the same mission, vision and values. schizophrenia. Accordingly, the association belongs to an informal Children’s Rights Security Lithuania, “the land of rain” The association has been working hard Coalition at national level that brings When the questions “What is to influence and cooperate with decision- together 13 NGOs working in the area of Lithuania?” and “What is it about?” makers from three different ministries: protecting children’s rights. They are also were asked to a support group on the Ministry of Science and Education, part of the “Mental Health 2030” coalition, a social media channel for parents the Ministry of Labour and Social Security which aims to protect the rights of persons of children with autism, one young and the Ministry of Health and Security. with mental disabilities and operates with boy answered: “Lithuania is little, beautiful and sad”. “Why it is sad?”, In the case of the latter, the advocacy the support of 20 NGOs and experts. and advisory work undertaken by the the parents asked. “Because it is • Conducting active dissemination association was very valuable in pushing raining here,” answered the child. activities including wide press coverage for compulsory M-CHAT-R diagnosis tests (articles, radio and TV interviews, parti- It is a fact that rainy weather is during toddlers’ visits to pediatricians. cipation in press conferences, etc.). This quite common in Lithuania. Even the origin of the country’s name As of May 2016, the association has been activity is essential in order to spread is often associated with the word cooperating with the Ministry of Science awareness about autism and everything “rain”. This is why this word inspired and Education to improve the educational that surrounds it (the lack of support, the the Lithuanian Autism Association’s process in kindergartens and schools by main difficulties and challenges faced by current name: “The Rain Children incorporating scientifically-based thera- autistic people and their families). Association”. pies.

Page 18 Autism - Europe Autism Today provides intervention for children in Bulgaria Specialists in the area of Applied Behavior Analysis (ABA) and parents of children with autism are working together to run the Autism Today association in Sofia. Autism Today aims to establish centres offering services and focusing on social inclusion for children on the autism spectrum.

Pioneers in Bulgaria Until recently there were no certified centres specialised in ABA for children on the autism spectrum in Bulgaria. This situation changed in September 2015 when Autism Today opened the country’s first designated ABA Centre. Here, trained professionals certified by the American Certifying Board of Certified Behavioral Therapists provide therapy for children with autism.

In this center psychologists, speech therapists and special needs educators use evidence-based methods and observe world-wide professional and ethical standards of practice to continue their specialisation as applied behavioral analysts. This approach allows

Autism Today to provide qualitative care to children starting from Today ©Autism the earliest age possible. Autism Today’s center

Autism Today’s main objectives are: 1. Creating conditions to offer therapies to children on the autism spectrum; 2. Providing more children on the autism spectrum with access to experts who can apply evidence-based methods;

3. Supporting the effective inclusion of children and teena- Today ©Autism gers with autism, improving their quality of life and Celebrations in Sofia during World Autism Awareness Day 2016 increasing their chances of living autonomously; The association also organises numerous activities to achieve 4. Supporting amendments to Bulgarian national legis- its goals: lation in the field of education, health and social policy in order to incorporate best practices from throughout 1. Organising and conducting information campaigns, concerts, Europe and all over the world; awareness-raising events, public debates and seminars in order to ensure public support; 5. Establishing common standards for autism; 2. Organising training for therapists, specialists and teachers 6. Changing the perceptions and attitude of society involved in the care and education of children with autism; towards children with autism; 3. Developing partnerships with international organisations, 7. Providing moral, physical and psychological support to specialists and therapists in order to “import” expertise and families of children with autism; provide a positive experience to Bulgaria; 8. Working to ensure access to quality education for 4. Performing joint activities with other organisations around the children with autism in Bulgaria, tailored to their indivi- country and abroad for mutual cooperation and exchanging dual needs and requirements; experience; 9. Working to provide quality health and social care, as well 5. Establishing professional centres for children with autism. as independence and quality of life, to autistic children, The activities of the Association are funded entirely by donations young people and their families in Bulgaria; and funds from projects. 10. Protecting the rights of autistic individuals and their families in cases of discrimination and segregation. Autism Today is an affiliated member of Autism-Europe. More information: www.autismtoday-bg.eu

Page 19 15 years creating “a better world for autistic people” in Poland JiM Foundation, a non-profit organisation from Poland founded in 2002 by volunteers who for many years had worked on behalf of children with disabilities, works to provide high-quality and free-of-charge services to autistic children and adults and other disabled people. Covering education and medical service needs JiM have several schools and kindergartens for children with autism. These educational services provide high-quality and “autism- ©JiM Foundation adapted” education for nearly 200 pupils to maximise each one’s achievement potential. Moreover, everyday the JiM Clinic provides diagnosis and the most comprehensive assessment and treatment plan for children with autism. The Clinic provides therapy for more than 1,000 children. JiM has nearly 150 full time employees: thera- pists, doctors and fundraising officers.

All JiM services are free of charge.

In addition, JiM provides specialist support to protect people on the autism spectrum from unfair discrimination. In 2015 alone the JiM Foundation successfully intervened in hundreds of cases of discrimi- nation against autistic persons. Tomasz Michałowicz, JiM Foundation CEO, with one of their pupils.

The objectives of the Foundation are The JiM Foundation is also committed to raising awareness and advocating to provide equal access, rights and opportunities for to: children with autism, on a par with all other citizens. They have • Provide assistance to disabled individuals, especially already organised numerous actions and social campaigns (such as disabled children and young people, as well as their the “Poland in blue” initiative or addressing a letter to the Minister families and relatives; of Health aiming at adding obligatory screening tests for children • Provide assistance to children and young people from between 16 and 30 months of age to detect autism). At the national families in a difficult financial situation, as well as their and local levels, JiM advocates for equal rights and opportunities families and relatives; for people with autism. Furthermore as it has done for the last • Provide assistance to care and educational institutions; two International Congresses, this year JiM is offered grants for delegates to attend Autism-Europe’s 11th International Congress in • Provide assistance in educating children and young people, especially those from underprivileged Edinburgh in September. The grants were open to people from all backgrounds; over the world, both professionals and self-advocates/parents. • Foster the inclusion of disabled children and young children in all areas of society; • Protect and promote wellbeing through the running of The JiM Foundation is an associate member a health service centre, general and specialist medical of Autism-Europe. practice, medical activities, specialist therapies, and More information: http://jim.org/ rehabilitation centres; • Promote the employment and professional activity of those who are unemployed or at risk of losing their job ; Parents Club • Support entrepreneurial development, also among disabled individuals; Besides helping persons with autism, the JiM Foundation • Implement tasks in the area of social assistance, inclu- has also created a unique network of Parents Clubs. The ding assistance to families and people in vulnerable JiM Parents Clubs bring together almost 3,000 members in situations, as well as fostering equal opportunities; more than 20 cities all over Poland. Parents and carers have • Provide assistance to people suffering from infectious the opportunity to exchange experiences, give and receive diseases, such as HIV, especially children and young people. support in everyday life or crisis situations which signifi- cantly improves their quality of life.

Page 20 Autism - Europe Providing educational programmes for children with autism in Saudi Arabia The Qudurati Centre, considered the first centre for special education in Buraydah (capital of Al-Qassim Region, in north central Saudi Arabia), was established in 2009 under the supervision of the Ministry of Social Affairs to provide daily care and services for people with special needs. One of its main objectives is to provide a comprehensive educational environment for children with autism.

With more than 300 beneficiaries, the Qudurati centre raises awareness of autism by providing special training programmes for specialists and professionals, aiming at keeping them updated with international developments in this area. As well as improving the ©Qudurati Center ©Qudurati quality of teaching for people with autism, the centre offers training courses for parents and families to overcome their child’s difficulties. The Centre also undertakes activities such as the organisation of conferences and forums, encouraging all kind of voluntary activities and welcoming experts from Saudi Arabia and beyond to provide services to people in Al-Qassim. Its major achievements include a training programme for under- graduate students at Qassim University, ongoing since 2010, and a partnership programme undertaken with the Association of Persons Professionals and beneficiaries of the Qudurati Centre with Disabilities in Buraidah from 2010 to 2012. Furthermore, they were awarded by the Ministry of Social Affairs, which praised the Center’s achievements. The Qudurati Centre has several partnerships both with govern- mental and nongovernmental organisations to spread awareness Center ©Qudurati of autism. It also works in partnership with Buraidah’s Maternity and Children’s Hospital. Moreover, the Centre is running a charity programme called “Help” to raise money to support services for people with autism in Buraidah. About the Centre As well as offering services for children and young people with disabilities, the Centre was conceived to offer early intervention to children up until the age of six. Early intervention is on offer for Classroom at the Qudurati Centre children with autism, Down syndrome, intellectual and/or learning disabilities, cerebral palsy, speech and communication disorders, mobility and physical impairments. The building has three floors The Qudurati Centre is a non-European (fully equipped) with four areas for entertainment and two rooms member of Autism-Europe. for physiotherapy. More information: http://qudurati.sa/

The Qudurati Centre offers various kinds of services covering a range of different conditions: • Consulting and guidance for parents • Assessment of speech and communication disorders • Treatment and rehabilitation for speech and communication disorders • Linguistic communication programmes • Skills development programmes for preschool children • Programmes for people with learning disabilities

Page 21 Member Associations of Autism-Europe

Sesame Autisme THE NETHERLANDS FULL MEMBERS 53, rue Clisson Nederlandse Vereniging voor Autisme (national associations of people F - 75013 PARIS (N.V.A.) with autism and parents) Tel: + 33.1.44.24.50.00 Weltevreden 4a Gautena Fax: + 33.1.536.12.563 NL 3731 AL De Bilt P.O. Box 1000 ARMENIA E-mail: [email protected] Tel: + 31.30.229.98.00 E - 20080 San Sebastian Autism Overcoming Website: www.sesame-autisme.com Fax: + 31.30.266.23.00 Tel: + 34.943.21.53.44 Yerevan, Armenia Email: [email protected] Fax: + 34.943.21.52.39 9 Arshakuniats St., GERMANY Website: www.autisme.nl E-mail: [email protected] Tel: +374 91 41 59 83 Autismus Deutschland Website: www.gautena.org +374 91 73 90 12 Rothenbaumchaussee 15 NORWAY E-mails: [email protected]; D - 20148 Hambourg Autismeforeningen I Norge (A.I.N.) SWEDEN Tel: + 49.40.511.56.04 [email protected] Postboks 6726 Etterstad Autism- och Aspergerförbundet Fax: + 49.40.511.08.13 N - 0609 Oslo Bellmansgatan 30 E-mail: [email protected] Tel: + 47- 23 05 45 70 AUSTRIA S- 118 47 Stockholm Website: www.autismus.de Fax : + 47- 23 05 45 61/51 Tel: +46 8 702 05 80 Rainman’s Home E-mail: [email protected] Semeperstrasse 20/2 - 6 Fax: + 46.86.44.02.88 GREECE Website: www.autismeforeningen.no E-mail: [email protected] 1180 Wien Greek Society for the Protection of Website: www.autism.se Tel: +43 1 478 64 34 Fax: +43 478 91 95 Autistic People (G.S.P.A.P.) E-mail: [email protected] 2, Athenas Street PORTUGAL SWITZERLAND Website : http://rainman.at/ GR-10551 Athens Federacao Portuguesa De Autismo Autisme Suisse Tel: +30.210.321.6550 Rua José Luis Garcia Rodrigues Association de Parents BELGIUM Fax:+30.210.321.6549 Bairro Alto da Ajuda Neuengasse 19 Association Pour E-mail: [email protected] P-1300-565 Lisboa 2501 Biel l’Epanouissement des Personnes Website: www.autismgreece.gr Tel: + 351.21.363.0040 Tel: 032 322 10 25 Fax: + 351.21.361.6259 Autistes (A.P.E.P.A.) Tel: + 41.31 911 91 09 E-mail: [email protected] Rue de l’Aurore 98 HUNGARY E-mail: [email protected] Website: www.fpda.pt B-5100 Jambes Hungarian Autistic Society (HAS) Website: www.autismesuisse.ch Tel: + 32-81-74.43.50 Fejér György u. 10. I./23. ROMANIA Fax: + 32-81-74.43.50 1053 Budapest THE NETHERLANDS Fedra E-mail: [email protected] Tel: +36 1 301 9067/354 1073 Nederlandse Vereniging voor Autisme 22 Decembrie street no. 23 Website: www.ulg.ac.be/apepa Fax: +36 1 302 1094 (N.V.A.) Maramures Email: [email protected] or info@ Weltevreden 4c Baia Mare Vlaamse Vereniging voor Autisme esoember.hu NL 3731 AL De Bilt E-mail: [email protected] (V.V.A.) Website: www.esoember.hu ; www. Tel: +31.30.229.98.00 autista.info.hu ; www.aosz.hu Groot Begijnhof 14 Fax: +31.30.266.23.00 SERBIA B - 9040 Gent E-mail: [email protected] ICELAND Serbian Society for Autism Tel: + 32.78.152.252 Website: www.autisme.nl Einhverfusamtökin Gundulicev venac Street, 40 Fax: + 32.9.218.83.83 Haaleitisbraut 11-13 11 000 Belgrade, Serbia E-mail: [email protected] IS - 108 Reykjavik Tel/Fax: +381 11 3391-051 National Autistic Society (N.A.S.) Website: www.autismevlaanderen.be Tel: +354 562 1590 E-mail: [email protected] 393 City Road E-mail: [email protected] Website : www.autizam.org.rs London EC1V 1NG CZECH REPUBLIC Website: www.einhverfa.is Čechy Asociace Pomáhající Lidem s SLOVAKIA Tel: + 44.20.7833.2299 Autismem, o.s. (APLA) IRELAND Spoločnosť na pomoc osobám s autiz- Fax: + 44.20.7833.9666 Dolanská 23, 161 00 Praha 6 - Liboc Irish Society For Autism (I.S.A.) mom (S.P.O.S.A.) E-mail: [email protected] Tel.: +420 606 729 672 16/17 Lower. O’Connell Street Namestie 1.maja 1. Website: www.nas.org.uk E-mail: [email protected] IRL - 1 Dublin POBOX 89 Website: http://www.praha.apla.cz/ Tel: + 353.1.874.46.84 810 00 SK- Bratislava 1 Scottish Autism www.autismus.cz Fax: + 353.1.874.42.24 Phone + 421 915 703 708 Hilton House, Alloa Business Park E-mail: [email protected] E-mail: [email protected] Whins Road Alloa FK10 3SA - Scotland CROATIA Website: www.autism.ie Website: www.sposa.sk Tel: + 44.1.259.72.00.44 Croatian Society For Autism Fax: + 44.1.259.72.00.51 (S.H.P.A.C.) ITALY SPAIN E-mail: [email protected] Dvorniciceva 6 Associazione Nazionale Genitori Asociación de padres de niños y niñas Website: www.scottishautism.org/ 10000 Zagreb Soggetti Autistici Onlus (A.N.G.S.A.) autistas de Bizkaia (APNABI) Tél : + 385.51.551.344 Via Casal Bruciato 13 C/.Antonio Guezala, lonjas 1 y 2 Fax : + 385.51.551.355 I - 00159 Roma E - 48015 Bilbao Tel: + 34.94.475.57.04 E-mail : [email protected] Tel : + 39.06.43.58.76.66 Fax: + 34.94.476.29.92 Site internet : www.autizam-uzah.hr Fax: + 39.081.807.13.68 AFFILIATED E-mail: [email protected] E-mail : [email protected] MEMBERS Website: www.angsaonlus.org http://www.apnabi.org/ DENMARK (regional associations of people Landsforeningen Autisme LITHUANIA Autismo Burgos with autism and parents) Blekinge Boulevard 2 Lietaus vaikai (Rain Children) C/ Valdenunez, 8 2630 Taastrup Pylimo str. 14A/37 E - 09001 Burgos BULGARIA Denmark 01117 Vilnius Tel: + 34.947.46.12.43 Autism Today Association T: 0045 70 25 30 65 Tel: +370 620 206 65 Fax: + 34.947.46.12.45 1738 Sofia E: [email protected] Email: [email protected] E-mail: autismoburgos@autismobur- 2 Vitosha Street W: www.autismeforening.dk Website: www.lietausvaikai.lt gos.org Tel: +359 887 366 067; +359 887 206 Website: www.autismoburgos.org 206 FINLAND LUXEMBOURG Email: [email protected] Finnish Association for Autism and Fondation Autisme Luxembourg Autismo-España Website: http://www.autismtoday-bg. Asperger’s Syndrome 68, route d’Arlon C/ Eloy Gonzalo 34 1° eu/ Nuijamiestentie 3 B L-8310 Capellen E - 28010 Madrid ESTONIA 00400 Helsinki Tel: +352-26 91 11 1 Tel: + 34.91.591.34.09 Estonian Autism Society (E.A.S.) Tel: + 358.9.77.42.770 Fax:+352-26 91 09 57 Fax: + 34.91.594.18.31 E-mail: confederacion@autismo. Rahu 8 E-mail: [email protected] Email: [email protected] Site Internet : www.fal.lu org.es EST - Tartu 50112 Website: www.autismiliitto.fi Website: www.autismo.org.es Tél: + 372.557.9980 MALTA E-mail: [email protected] FRANCE Autism Parents Association (APA) Federacion Española De Autismo Autisme France P.O.BOX 30 (F.E.S.P.A.U.) FRANCE 1175 Avenue de la République Marsa c/ Atocha, 105 Abri Montagnard 06 550 La Roquette sur Siagne MTP 1001 E - 28012 Madrid F - 64490 Osse-en-Aspe Tel: + 33.4.93.46.01.77 Email: Tel: + 34.91.290.58.06/04 Tel: + 33.5.59.34.70.51 Fax: + 33.4.93.46.01.14 [email protected] Fax: + 34.91.290.58.10 Fax: + 33.5.59.34.53.21 E-mail: [email protected] Website: E-mail: [email protected] E-mail: [email protected] Website: www.autismefrance.org www.autismparentsassociation.com Website : www.fespau.es Website : http://fratrieabri.free.fr/

Page 22 Autism - Europe Autisme Poitou-Charentes SWITZERLAND FRANCE UKRAINE Monsieur Jean Marie Baudoin Autisme Suisse Romande E.D.I. Formation Child With Future 23, rue Noir av. de la Chablière 4 21, Avenue Cévoule 21/16, Skovorody Str. 79000 Niort CH - 1004 Lausanne F- 06220 Golfe Juan Kyiv 04070 Tel: + 33.549.24.14.87 Tél. +41 21 646 56 15 Tel: + 33 4 93 45 53 18 Ukraine E-mail: [email protected]. Tel: +38 (044) 585 36 08 E-mail: [email protected] Fax: + 33 4 93 69 90 47 E-mail: [email protected] Website : www.autisme.ch E-mail: [email protected] Dialogue Autisme Website: www.autisme-formation.net Website: www.cwf.com.ua BP 248 UNITED KINGDOM 45162 Olivet Cedex Autism Initiatives Union Nationale des Associations de Tel: +33 02 38 66 34 75 7, Chesterfield Road, Merseyside Parents et Amis de Personnes Handica- NON EUROPEAN Fax: +33 02 38 66 34 75 Liverpool L23 9XL pées Mentales (U.N.A.P.E.I.) E-mail: dialogue-autisme@voilà.fr Tel: + 44.1.51.330.95.00 15, Rue Coysevox MEMBERS Fax: + 44.1.51.330.95.01 F - 75876 Paris Cedex 18 ITALY E-mail: [email protected] Tel: + 33.1.44.85.50.50 KUWAIT Associazione Nazionale Genitori Website: www.autisminitiatives.org Fax: + 33.1.44.85.50.60 Kuwait Centre For Autism Soggetti Autistici Lombardia (ANGSA E-mail: [email protected] P.O. Box 33425 Lombardia) Al-Rawda 73455 Spectrum Website: www.unapei.org Via B. Rucellai 36 Kuwait Sterling Court, Truro Hill, Penryn, I - 20126 Milano MI ITALY Email: [email protected] Tel: + 39-02-67.49.30.33 Falmouth UK - TR10 8AR Cornwall Association des Parents et Amis des Fax: + 39-178-2282858 Malades d’Autisme (A.P.A.M.A.) Tél: + 44.1.326.371.000 MOROCCO E-mail: [email protected] c/o P.A.M.A.P.I. Scuola ‘Amerigo Fax: + 44.1.326.371.099 A.P.A.E.I. Site internet: www.angsalombardia.it Vespucci’ E-mail: [email protected] Rue 9 Avril - Maârif Via Bolognese, 238 Casablanca Fondazione Oltre Il Labirinto Onlus Site Internet: www.spectrumasd.org I - 50139 Firenze Mario Paganessi Tel: + 212.(0)5 22.25.81.43 Tel: + 39.05.54.00.594 Via Botteniga, 8 Autism Anglia Fax: + 212.(0)5 22.25.57.11 Fax: + 39.05.54.00.594 Email: [email protected] 31100 Treviso Century House – Riverside Office Tel/Fax: +39-345-5510560 Center A.P.R.I. W: www.oltrelabirinto.it SAUDI ARABIA North Station Road, Colchester C/o ANFFAS Via Rasi, 14 Qudurati Centre I - 40127 Bologna Associazione Diversamente Onlus C01 1RE AL Qassim Via Carlo Pisacane, 29 Tel: +44 (0) 12 06 577678 Tel: + 39.051.24.45.95 Buraydah 09134 Cagliari Pirri Fax: + 44 (0) 1206 578581 Fax: +39.05.124.95.72 Al Montazah Area Tel: 0039 (0)3338944791 E-mail: [email protected] E-mail: [email protected] South of al Montazah Garden Email: [email protected] Website: www.autism-anglia.org.uk Tel: + 966 1 638 18555 : + 966 505 283 Website: www.diversamenteonlus.org MALTA 433 (mobile) Autism Northern Ireland (N.I. Autism/ Inspire (The Eden & Razzett Founda- Fax: + 966 1 638 23433 Email: [email protected]; mus- LATVIA PAPA) tion) Bulebel [email protected] Latvijas Autisma apvienība Donard, Knockbracken Healthcare Zejtun Torņa street 4 Park, Saintfield Road LV-1050, Rīga ZTN 3000 Belfast BT8 8BH E-mail: [email protected] Malta Website: www.autisms.lv Tel: + 44.28.9040.1729 Tel: +356 21807708 Fax: + 44.28.9040.3467 Website: www.inspire.org.mt PORTUGAL E-mail: [email protected] Associação Portuguesa para as Pertur- Website: www.autismni.org THE NETHERLANDS bações do Desenvolvimento e Autismo Dr. Leo Kannerhuis (A.P.P.D.A.-Lisboa) Autism East Midlands Houtsniplaan 1 Postbus 62 Rua José Luis Garcia Rodrigues Mr. Philip Carpenter 6865 ZH Doorwerth Bairro Alto da Ajuda Park Hall Resource Centre Tel: + 31.26.33.33.037 P - 1300-565 Lisboa Park Road, Bestwook Village Fax: + 31.26.33.40.742 Tel: + 351.21.361.6250 Nottingham NG6 8TQ E-mail: [email protected] Web- Fax: + 351.21.361.6259 Tel: 0044 (0)115 976 1805 site: www.leokannerhuis.nl E-mail: [email protected] Fax: 0044 (0)115 976 1356 Website: www.appda-lisboa.org.pt POLAND Email: [email protected] Fundacja Wspólnota Nadziei (Com- SPAIN Website: http://www.norsaca.org.uk munity of Hope Foundation) Autismo Galicia Więckowice, ul. Ogrodowa 17 Rua Home Santo de Bonaval no 74-bajo Autism East Midlands 32-082 Bolechowice E - 15703 Santiago de Compostela Mr. Philip Carpenter Tel: +48.12.378.43.58 Fax: Tel: + 34.981.589.365 Unit 31 Crags Industrial Estate +48.12.378.43.59 Fa : + 34.981.589.344 Morven Street Email: [email protected] E-mail: [email protected] Creswell Web Site: www.farma.org.pl Website: www.autismogalicia.org Workshop S80 4AJ Synapsis Foundation Fundacio Congost Autisme Tel: 0044 (0)1909 506 678 Ul. Ondraszka 3 Ronda del Carril 75 02-085 Warsawa 08530 - La Garriga - Barcelona - Spain E-mail: [email protected] Tel/fax: +48.22.825.77.57 Tel: +34-93-871.47.57 E-mail: [email protected] Website: Fax: +34-93-871.48.02 Website: www.synapsis.waw.pl E-mail: [email protected] www.autismeastmidlands.org.uk Website: www.autisme.com JiM Foundation Ul. Tatrzańska 105 Nuevo Horizonte 93-279 Łodź Avda de la Communidad de Madrid, s/n ASSOCIATE Tel: 0048 42 643 46 70 E - 28230 Las Rozas de Madrid Email: [email protected] Tel : + 34.91.637.74.55 MEMBERS Fax : + 34.91.637.77.62 Website: www.jim.org Facebook: https://www.facebook.com/ E-mail: [email protected] ALBANIA jimhelp/ Website: www.nuevohorizonte.es Fondacioni Femijeve Shqiptare Fondacioni Femijeve Shqiptare Fundacion Mas Casadevall (FMCA) RUSSIA Rr.” Deshmoret e 4 Shkurtit”, Pall. Apartat de Correus 172 Our Sunny World E-17820 Banyoles (El Pla de l’Estany- nr. 30 Rehabilitation Centre for Disabled Girona) Kati II, pas Akademise se Arteve Children Tel: +34.972.57.33.13 Tirane Albanie Lutchevoy proseck 3 Fax: +34.972.58.17.12 Tel: + 355.4.2270663 1071131 Moscow E-mail: [email protected] Email: [email protected] Tel: 007 (0)499 2680206 Website: www.mascasadevall.net Website: www.albanianchildren.org Website: http://solnechnymir.ru

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