52No 65June 2016

English Edition

Autism - Europe

For Diversity

Against Discrimination

Autism-Europe aisbl Rue Montoyer, 39 • B - 1000 Brussels, BelgiumTel.:+32-2-675 75 05 - Fax:+32-2-675 72 70E-mail: secretariat@autismeurope.orgWebsite: www.autismeurope.org

P u b l i s h e d b y A u t i s m - E u r o p e A f g i f t e k a n t o o r - B u r e a u d e d é p ô t : B r u s s e l s - E d . r e s p o n s a b l e : Z . S z i l v a s y

Our campaign: Respect, Acceptance, Inclusion

“On the High Seas”: A film to promote the inclusion of children with autism

Jon Spiers, Chief Executive of Autistica, 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

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 for people with autism ................................................... 12- Interview with Adam Bradford, self-advocate and Queen’s Young Leader 2016 ................................... 13- Keynotes speakers announced for Autism-Europe’s 11th International Congress ........................................... 14- The “Eight Points” project ............................................. 15- Gautena announced winner of the European Citizen Award ................................................. 17- ARAPI’s 11th Regional Seminar “Autism and adulthood. From clinic to intervention” ............................................ 17

New members- Lietaus Vaikai, Lithuania ................................................ 18- Autism Today, Bulgaria… ................................................ 19- JiM Foundation, Poland ................................................. 20- Qudurati Centre, Saoudi Arabia .................................... 21

- members List ............................................................... 22

collaborators editorial committee:Aurélie BarangerZsuzsanna SzilvasyEvelyne FriedelPietro CirrincioneHarald NeerlandMaria WroniszewskaClaude SchmitMarta Roca

writing, editing & coordination:Cristina FernándezHaydn Hammersley

translation: Magali Vlayen

Layout & Printing: mmteam sprl - +32-495-52-32-92 - Frédéric Maigret

cover: 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 with autism and their families. Photo from Diversamnte Onlus for Autism-Europe.

Autism-europeRue Montoyer 39 • B-1000 Bruxelles • BelgiqueTél.: +32-2-6757505Fax: +32-2-6757270E-mail: secretariat@autismeurope.orgSite Internet : www.autismeurope.org

Account number: Banque BELFIUS : 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 © symbolat the end of the article. Articles and information for future issues of LINKare welcome. They should be sent to the address above.

LINK est aussi publié en français. Si vous souhaitez recevoir notre revue en français, veuillez en avertir notre sécretariat à l’addresse ci-dessus.

SUMMARY

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.

The information contained in this publication does not necessarily reflect the views or opinion of the European Commission.

Pour la diversité

Contre les discriminations

Dear friends,

It is with great pleasure that we present this latest edition of our LINK magazine, which offers an overview of Autism-Europe’s recent activities as well as news from a range of different stakeholders in the world of autism. In this issue, you will be able to get to know our new member associations. We would like to warmly welcome these new members and express our happiness at seeing our network continue to expand and become enriched with new approaches and perspectives.

This issue will take a look back over our “Respect, Acceptance, Inclusion” campaign, launched on World Autism Awareness Day, April 2. Through this campaign we are encouraging the general public to get to know autism better and to work together to create a more inclusive world where everyone can participate fully. This 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-diverse societies.

A neurodiverse society is made rich by the individual strengths and diversity its members have to offer. With this in mind, we interviewed Adam Bradford who was recently honoured by the Queen of England for his work as a social entrepre-neur. He too calls for greater understanding and support for people on the autism spectrum in order to bring about improvements in quality of life.

We will also be exploring the serious issue of premature mortality among persons with autism. Autistic people pass away on average 16 years earlier than their neurotypical counterparts. It is essential to ensure continued cooperation in researching solutions to promote equal opportunities, as well as to mobilise public authorities to better respect the rights of persons with disabilities.

How can we live a happier and healthier lives in which all people’s rights are respected? This will be the key question raised during our International Congress, which will take place from the 16 to the 18 September in Edinburgh (UK). We hope you will join us as we come together to share knowledge and experiences, and to jointly face the common challenges ahead of us.

We very much hope you enjoy reading this edition,

Zsuzsanna Szilvasy Aurélie BarangerPresident Director

During the long-running campaign, people are invited to raise awareness on social media and during events by symbolically passing a relay baton to promote greater inclusion and partici-pation of people with autism in society. This symbol was chosen because, as well as embodying an act of acceptance and inclu-sion, through its reference to sport the relay baton highlights the strength that comes from working together and complemen-ting each other.

One of the biggest barriers faced by people on the autism spectrum is the discrimination they experience in many fields of life. It often stems from a lack of understanding about what it really means to be autistic. Attitudinal barriers, stereotypes and prejudices hamper the participation of autistic people in society.

It is time for society to gain a better understanding of autism to remove the barriers that autistic people face, and which

prevent inclusion. To include people with autism, society must show acceptance. This requires respecting the diversity of those around you and accepting them for who they are. The notions of respect, acceptance and inclusion are thus intrinsically linked.

The campaign is based on the social model of disability and has a strong rights-based approach, recalling the principles of the United Nations Convention on the Rights of People with Disabilities to trigger the conditions for an inclusive society. This is reflected in the campaign manifesto, which outlines Autism-Europe’s call for action to policy-makers.

The closing of this long-running campaign, and Autism-Europe’s 11th International Congress, will coincide with the Paralympic games taking place in Rio de Janeiro, Brazil. The visual identity of the campaign, with the relay baton symbolising respect, accep-tance and inclusion, goes hand in hand with the theme of sport.

Pass the baton to promote the respect, acceptance and inclusion of people with autism!

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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.

Activities

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

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building momentum throughout europe

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call for action extended to decision-makersAutism-Europe invites policy-makers at the EU and Member State level to take action to pave the way for a more inclusive and neuro-diverse society. Following the successful adoption of the Written Declaration on Autism by the European Parliament in September 2015, Autism-Europe is now calling on the European Commission and EU national governments to begin the next leg of the relay, following demands by the European Parliament to initiate a European Strategy for autism. A strategy will be crucial for providing a coherent and holistic approach to supporting persons with autism and their families, as well as fostering the full respect of their rights.

This strategy would respond to the needs of persons with autism, many of whom face huge barriers in many areas of life, not least due to lack of support and understanding in society.

building momentum throughout europeAutism-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.

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 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.

Famous supportersA wide array of public figures as well as people from the world of sport have already participated in the campaign.

Personalities such as the players of FC Bayern Munich and Club Atlético de Madrid, the acting Prime Minister of Spain Mariano Rajoy, the Italian Minister of Health Beatrice Lorenzin and the First Lady of Malta, Michelle Muscat, have all publicly supported the campaign.

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.

Players from FC Bayern Munich such us Mario Götze, Thomas Müller, Robert Lewandowski and Xabi Alonso (among others) and coach Josep Guardiola joined the campaign

by passing the baton.

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The European Commissioner for Employment, Social Affairs, Skills and Labour Mobility, Marianne Thyssen publicly showed her support by promo-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 autism spectrum.

Stereotypes and prejudices are also a major barrier to accessing the labour market, where discrimination starts as early as the recruitment phase. There appears to be a lack of awareness of the fact that people with autism can be highly skilled and qualified, as well as extremely employable, but may need some reasonable accommodation in order to reach their full potential.

Nowadays, between 76 and 90 per cent of adults with autism in Europe are unemployed compared with 11.5 per cent of adults 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”.

This reasoning is equally central to the calls for action in Autism-Europe’s campaign manifesto.

The manifesto addresses a list of pressing issues that decision-makers in Europe must tackle to ensure autistic people are given the opportunities to thrive, not least the push for the creation of a European Strategy for Autism as laid out in the Written Declaration on Autism passed by Members of the European Parliament in 2015.

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 was the keynote speech given by Steve Silberman, author of “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity”.

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.

Ahead of World Autism Awareness Day the UN Secretary General Ban Ki-moon also made an address in which he called on governments around the world to foster more

neurodiverse societies that harness the human potential 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

Marianne Thyssen, European Commissioner for Employ-ment, Social Affairs, Skills and Labour Mobility.

Screenshot of the UN Secretary General Ban Ki-moon’s video message disseminated ahead of the 2016 World Autism Awareness Day

Over 20 MEPs from different European countries supported the campaign. In the picture, MEP Helga Stevens (Belgium)

and MEP Marek Plura (Poland).

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world Autism Awareness Day Observance at the uN

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1. In 2016, Rainman’s Home linked the “Respect, Acceptance, Inclusion” campaign with the “Light it up blue” initiative, which gains a growing number of supporters throughout Austria each year. In the

picture, the statue of Mozart in Salzburg lit up in blue.

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

2nd of April. Both were inclusive events for anyone who wanted to get involved, with the aim of raising as much awareness about autism as possible.

3. The Autisme Luxembourg Foundation released more than 500 blue biodegradable balloons, they launched the hot-air balloon Superjhemp together with other mini hot-air balloons and they followed

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.

4. In 2016, the Federação Portuguesa de Autismo, as well as supporting the “Light it Up Blue” initiative, focused its efforts on raising awareness among children. Thousands of schools across Portugal took

part in celebrating WAAD. In the picture, a human blue ribbon created by the Agrupamento Alexandre Herculano, in the city of Porto.

5. In Slovakia people with autism, their families and friends gathered on a walk around Devin Castle to mark WAAD. The walk was organised by S.P.O.S.A, Bratislava. For this occasion, everyone was dressed

in blue and held blue balloons. The castle of Bratislava was also lit up in blue.

6.Inauguration of the mural created by Sixe Paredes (an internationally recognised artist) with the support of people with autism who live and work at Autisme La Garriga.

Screenshot of the video produced by the the National Autistic Society (UK) as part of their campaign called “Too Much Information”

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Celebrating World Autism Awareness Day across Europe

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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

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study visit in cagliariParticipants of the meetings could also learn about local services available to people with autism in Sardinia during a conference held in the Regional Centre for Autism (“G. Brotzu”- Hospital) in Cagliari. The Centre’s executive director Dr. Giuseppe Doneddu, together with the local authorities, Prof. Roberta Fadda (University of Cagliari), Marco Espa (National President of ABC Association) and Nicola Pintus (national President of the “Progetto Filippide Nazionale”) presented some facts, figures, research and on-going projects in Sardinia, from different perspectives.

AE member and host of the meetings, Diversamente Onlus, invited participants to discover their region, including a visit to the Archeological Area and Coltellazo Tower in Nora, the Archaeological Museum and the city center of Cagliari. AE extends its sincerest thanks to Diversamente Onlus for their efforts in order to make the meetings successful and enjoyable for everyone involved.

Annual General Assembly: Autism-Europe’s network of members continues to grow

The associations Rain Children (Lithuania), Autism Today (Bulgaria), the JiM Foundation (Poland) and the Qudurati Centre (Saoudi Arabia) were welcomed as new AE members during its latest General Assembly (see pages 18 to 21). During these meetings, representatives of European autism organisations gathered to learn more about recent developments with regard to autism at the EU level and to discuss and vote on issues related to AE’s activities and membership.

Participants had the opportunity to share experiences on topics such as the quality of autism services and good practices in terms of awareness-raising. Highlights of the meetings also included the (re)election of members of the Council of Administration, which now consists of 37 members from 24 countries, and the decision 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

implementation of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) by the CRPD committee. Furthermore, 2015 saw the European Parliament’s adoption of the Written Declaration on Autism with the participation of AE.

During the meetings, AE members also learned more about the European cooperation in which AE is involved as well as the 2015 World Autism Awareness campaign “Autism. Stop discrimination”. 2016 will continue in similar fashion, with the addition of two new European projects (TRASE and DE-ENIGMA), the “Respect, Acceptance, Inclusion” campaign (see page 3 to 6) and Autism-Europe’s 11th International Congress in Edinburgh (see page 13).

see all the pictures of these meetings on Ae’s Facebook page: www.facebook.com/autismeurope.AE/

Quality of services for people with autismMaria Wroniszewska, secretary general, led a session aiming at elaborating a framework document on the quality of services for people with autism, including the promotion of international guidelines for intervention. The importance of wording (from a rights-based and inclusive perspective) was one of the things highlighted during this session. One of the group suggested to replace the following words for their counterparts to the right.

Self-advocates were also represented in these meetings by Monique Post, Pietro Cirrincione (AE’s vice-president) and Jan Verhaegh (from left to right).

Participants of AE’s General Assembly during a voting session.

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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.

Attendees enjoyed the sightseeing tour of Pula and Cagliari prior to the meetings.

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.

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“The more people get to know autism, the more autistic people and their families can feel accepted”. It was with this motto in mind that in 2015 Diversamente Onlus and other two Sardinian associations embarked on the adventure of producing a documentary about a cruise for children and young people with autism and their families to promote inclusion and accept-ance. Relying on strong communication and crowdfunding campaigns, the film crew is currently working on the creation of the film which will relive the time spent on the cruise to spread the message that “people with autism and their families can do the same things as any other family, even go on holiday”. Participants in this initiative, which took place in April 2015 across the Mediterranean, had the opportunity to visit Italy (Cagliari, Rome and Savona), France (Marseille), Spain (Barcelona) and Malta (La Valetta). Angela (8), Marco (9), Federico (13), Danilo (31) and their families, all of whom took part in the cruise, will be the film’s focal characters. It is through them that the audience will discover every

detail and anecdote of the trip. During this seven-day cruise, the film crew shot a total of 30 hours of footage and took more than 550 photos of those on board.

the film As a second step in the project, the film-documentary will be edited. The film crew aims to produce a real documentary that uses the narrative of a novel. The topic of autism will be addressed with humor and simplicity and will go past the sense of pity that films about disability often have. Through the story of this journey, the film will show the adventures and adversities that autistic people face on a daily basis, the unconditional love of the families for their children and the great challenges that families touched by autism are confronted with when seeking a ‘normal’ life.

The film aims to sensitise as large an audience as possible to the problems experienced by people with autism and their families, and to their needs for inclu-sion. For these families, even a simple

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.

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 main characters

Through the story of this journey, the film will show - with humor and optimism - the adventures and obstacles that autistic people face on a daily basis, the uncondi-tional love of the families for their children and the great challenges that families touched by autism are confronted with when seeking a “normal” life.

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From top to bottom:Federico, Angelica, Marco, Danilo

Film “On the High Seas” to promote inclusion of children with autism

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vacation can trigger anxiety and fear: the thought of possible difficulties and misunderstandings can lead families with autistic children to avoid doing what for a “normal” family would be a thing of joy and relaxation. It does not seem to be asking a lot to want society to take the needs of autistic people into consid-eration, and yet it often appears the world does not understand the requirements of people on the spectrum.

The documentary aims to contribute and give voice to all those families, and convey the optimistic message that “by joining forces it is surely possible to find the route again, even on the high seas!”This second stage of the project foresees not only the audio-video postproduction and advertisement, but also the film’s distri-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 crowdfundingTo 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,

donating is still possible on the dedicated project’s website. Many different types of rewards are foreseen for those who decide to fund the project: postcards sent by the children from the ports touched during the journey, T-shirts, posters, a DVD of the film and a lot more. There is even the possibility of becoming official producers of the film. To complete this co-financing, the second phase of the project (including post produc-tion, promotion and dissemination) is also supported by the Banco di Sardegna Foundation in addition to the support of the association InMediAzione.

more information www.inaltomare.org

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.

Transnational links: meeting with Omar Farrugia, President of the Autism Parent Association in Malta – member of Autism-Europe

the partnershipDiversamente Onlus, an organisa-tion consisting of parents, family members, professionals and people who have an interest in autism in general, is the project’s lead partner. Furthermore, InMediAzione, a social advancement organisation with the goal of creating audiovisual training programmes focused on subjects strongly rooted in social wellbeing, and Marraiafura, a group which for more than five years has been dealing with topics related to communication for social and active participation and sustainability, have joined forces to carry out the “On The High Seas” project.

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Autism-europe: could you say a few words about the importance of these findings for the autism community?

Jon Spiers: Our research confirms the true scale of the hidden morta-lity crisis in autism. Autistica’s report, “Personal Tragedies, Public crisis”, followed recent findings from a very large Swedish study on early death

in autism (carried out by researchers from the Sweden’s Karolinska Institutet and funded by Stockholm County Council, Karolinska Institutet and the Swedish Research Council) with what we already knew about the poor health outcomes of autistic people in the UK and around the world.

The data is stark: autistic people die on average 16 years earlier than the typical population, with those who also have a learning disability dying more than 30 years younger than the norm (…). I hope that by bringing this infor-mation to their attention in this report, we can all work together to be aware of the risks, and to pressure government, funders, industry and health services to tackle the issue.

Ae: Does the study show that people with autism will definitely have a shortened life?

JS: The figures we have are all at population level and are indications of risk. Many autistic people will live long lives but it is clear that this is not the case for many others. The Swedish study was very large, of high quality and is corroborated by multiple smaller studies from around the world, so the evidence base is strong.

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.

the facts:• Autistic people die on

average 16 years earlier than the general population

• Autistic adults with a learning disability are 40 times more likely to die prematurely due to a neurological condi-tion, with epilepsy being the leading cause of death.

• People with autism were 7.55 times more likely to commit suicide.

• Autistic adults without a learning disability are 9 times more likely to commit suicide

• Autistic people requiring high levels of support on average passed away before they reached 40, at 39.52 years.

Jon Spiers

Jon Spiers, Autistica’s chief executive

“Many autistic people will never see their 40th birthday”

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

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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.

Ae: research indicates that 70 per cent of autistic individuals have a mental health issue such as anxiety or depression, and 40 per cent have at least two mental health issues. is there any effective tailored mental health treatment or related service for meeting the needs of people with autism?

JS: There are some examples of good practice in mental health services, but we know that autistic people’s needs are often very poorly met. There has been very little research into mental health in autism, in both basic and applied science. As a consequence, we do not know why people with autism are at such increased risk of mental health problems and suicide, although research suggests biological and social factors may play a role in the link

between autism and poor mental health. It is likely that environmental factors also play a part, such as lack of employment, social exclusion, bullying, and experiencing stigma.

Ae: what can autistic people, their families and society do to avoid these risks?

JS: Awareness and preparedness are key. Being aware of the greatest risks of early death is important: recogni-sing early signs of epilepsy, anxiety and depression and seeking support as early as possible. Knowing that these may present themselves differently in those with autism is key for families, care providers and healthcare profes-sionals.

Society also needs to become more accepting of the differences in autistic people to give them the greatest chance to work, and build relationships, both of which will help dramatically with their mental health. Ultimately, we need more research to understand how we can best diagnose and support those most at risk of early death and use this knowledge to inform policy makers and service providers.

Ae: Do you know if there are any policies, strategies or examples of good practice already in place (in europe or elsewhere) to tackle this

specific problem of premature death among people with autism or with any other brain condition?

JS: There is little existing good practice specifically aimed at reducing morta-lity in autism, in part because the sheer scale of the crisis has only recently been revealed. Autistica is leading the way in lobbying for change in this area, to make health outcomes for autistic people an international priority. Efforts have been made in other fields such as learning disability and severe mental illness which could be rapidly assessed and retooled for use in autism.

Ae: based on the results of the study, what are your recommendations?

JS: We need to raise awareness of this hidden crisis among policymakers and healthcare providers, sparking local, regional, national and international responses.

We need to ensure information and services aimed at treating the condi-tions with the highest mortality risk are autism-appropriate and can actively reduce premature mortality in autism. To do this, we need to rapidly build on our research in this area and develop evidence-based policies, support services and treatment to urgently reduce premature mortality.

Epilepsy, which commonly co-exists with autism and affects up to 40 per cent of autistic people, is a potential factor in reduced longevity. Experts also point to bullying, social issues and side effects from medication as contribu-ting factors.

Cover of the report “Personal tragedies, public crisis”.

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New app helps people care for their teeth and prepare for dental visitsthe 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 app includes the following communication tools: pictograms, comics, sound tracks, useful tips, tutorials and contacts.

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 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 Autism & Oral Health Programme allows children with autism to accept or improve daily activities for maintaining oral hygiene: brushing calendar, pictograms, educational films,

etc.

• And to prepare dental visits

Tools have been designed to prepare people for dental visits 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

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All this helps support the independence of people with autism or with other PDDs, and provides technical assistance for:

• Communication• Autonomy• Social interaction• Educational programmes

• Social scenarios• Somatic care• Prevention of oral health

problems

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.

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Diagnosed with Asperger Syndrome at the age of 11, Adam launched an IT social enterprise and set up a mentoring and business project in his home town of Sheffield. In his teens, he gained a place at the Peter Jones Enterprise Academy and transformed his project into a social enterprise. He has worked with local and national youth organisations, acted as a mentor and supported young people to set up their own ventures. He has also run campaigns to improve understan-ding of autism, to raise awareness of gambling addiction and visited schools, colleges and prisons to help young people turn their lives around. He still runs his consultancy company and has worked with numerous charities and youth sector organisations.

Autism-europe: what does it mean to you and to the autism community to receive the Queen’s Young Leader Award?

Adam Bradford: The Queen’s Young Leader Award is an inspiring platform for me and all of the other winners to be able to show other young people how to lead impactful lives. In today’s world we need leaders more than ever, people who will change the world and challenge things which they feel are not right. For me and the other 59 winners of this prestigious award, this honour is recognition of our commitment to social change and for me personally it

helps to profile and champion the fact that people with autism can still achieve - when given the right support. I hope it inspires other young autistic people to reach their goals.

Ae: what challenges do you face in your daily life as a person on the autism spectrum?

AB: Nowadays I try to use different strategies and behaviour I have learned 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 people have heard of autism but hardly any bother to take time to understand the condition or its impact on people. For me I can over process things, not be able to filter my thoughts and that can give me a hard time mentally. I have to work hard and have a trusted group of friends and coaches who help me get on with my life day to day. I’m lucky to have been entrepreneurial in my career and have a great platform of opportu-nities to do things like share my story but I get a lot of support to help keep me focused.

Ae: tell us about the ‘Look Past the Label’ campaign and other campaigns you have carried out to raise awareness on autism.

AB: Look Past the Label was my way of telling the world to respect and appreciate difference. I decided to tell my story and give practical advice to parents whose children had just been diagnosed with autism. I needed to fill a gap where this practical, lived advice was missing. There is a lack of unders-tanding of autism in this country and across Europe and I wanted to help bridge that gap. I’m confident enough, luckily but sometimes reluctantly, to share my story and give people an insight into how I think and feel. I think more people should be brave enough to do that. Together we can help to bring about greater understanding and as such greater appreciation for autism. It is nothing to be ashamed of.

Ae: Are you currently working on anything related to autism awareness?

AB: Currently I am working with my business partner to design and launch a magazine run by and for autistic people, showcasing the positive achievements of those on the spectrum. It will launch online and I will give autistic young people real work experience through the business.

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.

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”

The Award is part of The Queen’s Young Leaders Programme, which cele-brates the achievements of young people who are taking the lead to transform the lives of others and making a lasting difference in their communities.

more information: www.queensyoungleaders.com

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Adam Bradford receiving the Queen’s Young Leader Award from the Queen Elizabeth II.

In this eleventh edition of the Congress, abstract submissions were linked to the overall theme: “Happy, healthy and empowered”. People on the autism spectrum, researchers, practitioners, teachers and other interested parties have submitted their abstracts with the aim of exploring a broad range of perspec-tives, both theoretical and practical. Over 600 abstracts were received and during the selection process value was placed on robust and well-evidenced knowledge, including academic research and profes-sional, personal and collective experience within the three key topic areas.

Keynote speakers The following keynote speakers have already confirmed their participation at the congress. An updated list will be avail-able soon:

• virginia bOveLL, Parent and Researcher, Ethox Centre

• Gunilla GerLAND, Independent Autism Advocate and Speaker

• bo HeJLsKOv eLvÉN, Clinical Psycho-logist

• Professor roy richard GriNKer, Professor and Chair, Department of Anthro-pology. The George Washington University

• Dr wenn LAwsON, Psychologist

• Professor tommy mAcKAY, Director of Psychology Consultancy Services and Professor of Autism Studies. University of Strathclyde

• Professor Liz PeLLicANO, Director, Centre for Research in Autism and Education (CRAE). UCL Institute of Education, University College London

• Dr Peter vermeuLeN, Lecturer and Consultant. Autisme Centraal

• Professor Fred r vOLKmAr, m.D., Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology. Yale School of Medicine, Child Study Center

workshop sessions• Gina DAvies, Specialist Speech and

Language Therapist and Sleep Counsellor

• Dr wendy KeAY-briGHt, Reader in Inclusive Design, Principal Lecturer Graphic Communication. Cardiff School of Art and Design with Ann HARBER, Autistic Adult and Katie NURSE, Key Worker. Surrey and Borders NHS Trust

• Diederik weve, Engineer and Autistic Adult. Stichting Autminds, PAS-Nederland, Shell.

For more information about the congress and registration, go to: http://www.autism.org.uk/professionals/conferences/xi-congress.aspx

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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.

Keynote speakers for Autism-Europe’s 11th International Congress in Edinburgh announced

Some of the European projects in which Autism-Europe is currently involved will be presented during the congress. A symposium will be dedicated to the Autism Spectrum Disorders in Europe (ASDEU) programme, which aims to research autism diagnosis, prevalence and intervention and to improve care and support for people with autism.

Likewise, the Equality and Social Inclusion Positive Parenting (ESIPP) project and the DE-ENIGMA Project (aiming at developing a multi-modal human-robot interaction for teaching and expanding social imagination in autistic children) will also be introduced via a poster presentation.

Grants to attend the congress offered to 30 participants by the Jim Foundation

This year the JiM Foundation offered grants to fund thirty places at Autism-Europe’s 11th International Congress, as it has done in previous years. Fifteen of the grants have been awarded to professionals who work with autistic people (thera-pists, academic, support workers, teachers and so on) and the rest have been awarded to parents, family members and students as well as individuals on the autism spectrum. The closing date for applications was the 31 May 2016.

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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.

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 employment perspectives. Ultimately people with autism would be empowered and better equipped to reintegrate into the social and labour market.

eight key areasAs the name suggests, the project was constructed around eight separate areas of activity:

1. Developing a nation-wide network of professionals and experts to develop an autism-specific care system. This involved the development of training materials, and pilot training sessions for professionals;

2. Ensuring that care and rehabilitation services throughout Hungary are harmonised and that they all meet quality requi-rements based on professional consensus;

3. Developing quality standards and a quality assurance system - including proper feedback channels and motivational factors;

4. Supporting the care network through the introduction of a quality assurance system (including financial and professional advisory support with the implementation process);

5. Offering methodological support to the network via a coordi-nation centre;

6. Developing a database and an online information resource centre to support service providers;

7. Supporting people with autism (skill development training);

8. Supporting the families of people with autism (skill develop-ment trainings).

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” to harmonise care and support services for people with autism in Hungary

Project presentation during the X Autism-Europe International Congress In Budapest in 2013.

Des parents donnant des explications et démontrant leur capacité à représenter leurs enfants dans une école primaire

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Continuous support is often needed by individuals with autism throughout their lives. This support can only be effecti-vely achieved with an adequate number of professionals who have autism-specific training. It is also essential that diffe-rent service providers work according to harmonised standards with a scientific basis. It was following this logic that the eight areas of activity were established.

OutcomesDuring the project, as a result of the profes-sional activities, a nation-wide network of specialists, an autism information system and a database of services were created. Furthermore quality standards were formed to help with the development of effective and reliable services. These quality standards were introduced and tested in a number of different services in the health, education and social sectors.

In parallel with the above processes, training courses were conducted for families of people with autism, as well as professionals working in the field.

The European Social Fund and Hungary’s Social Renewal Operational Programme, under the New Széchenyi Plan (National Development Programme), decided to grant more than 2.6 million EUR for the establishment of a National Provider

Network, Professional Consulting Network and Coordination Centre for people with autism.

the main results of the project are as follows:

• The creation of quality standards for seven different services in the care sector;

• More than 700 professionals in the area of health, education and social services were trained using the most up-to-date methods and information regarding autism, thanks to the 19 accredited courses delivered as part of the project;

• Two online courses were offered to parents and professionals who were unable to attend the training sessions in person;

• Three national conferences were organised during the lifespan of the project and were each attended by 300-500 people;

• Four autism-friendly events were organised with more than 60 families attending;

• 12 young people with autism parti-cipated in a self-advocacy groups supported by an autism expert.

more information:www.autizmusiroda.hu

The European Social Fund (ESF) is the European Union’s main instrument for supporting jobs, helping people get better jobs and ensuring fairer job oppor-tunities for all EU citizens. ESF financing of EUR 10 billion a year is improving job prospects for millions of Europeans, in parti-cular those who find it difficult to get work.

The ESF is not an employment agency – it does not advertise jobs. Rather, it is funding tens of thousands of local, regional and national employment-related projects throughout Europe: from small projects run by neigh-bourhood charities to help local disabled people find suitable work, to nationwide projects that promote vocational training among the whole population.

more information:

http://ec.europa.eu/esf/

Family training

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Autism-Europe’s member Gautena wins the “European Citizen Award 2016”

The ARAPI’s 11th Regional Seminar “Autism and adulthood. From clinic to intervention” to take place in Barcelona

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”.

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.

GAUTENA, the Basque acronym for Gipuzkoa Autism Society, is a not-for-profit parents association whose mission is to inform and spread awareness of autism within society, and to offer appropriate services to people with this condition. Gautena and Dr. Joaquín Fuentes, its scientific advisor, offer daycare services, outpatient treatment, housing services, informal activities for one’s free time, education and family support for more than 5,000 people.

The European Parliament has honoured 50 people and organisations from 26 EU countries with this year’s Citizen’s

Prize for their contribution to European coope-ration and the promotion of common European values. The jury, headed by Parliament Vice-President Sylvie Guillaume, selected the 2016 laureates after a consultation of the 79 proposals that made it through to the national juries. This specific application was submitted by Izaskun Bilbao Barandika, Member of the European Parliament.

The award ceremony will take place on October 12 and 13, 2016 in the European Parliament in Brussels.

With the motto “Autism and adulthood. From clinic to interven-tion”, the seminar aims to raise awareness of the psychopatho-logical characteristics of adults with autism, and intervention guidelines in this long stage of the life cycle. Considered to be a “Health Interest Event” by the Catalan Government’s Department of Health, the seminar is aimed at professionals, people with

autism, family members and other interested persons.

This is the first time that the event, which will be attended by Autism-Europe’s President Ms. Zsuzsanna Szilvasy, will be organised by a non-French-speaking country. Simultaneous inter-pretation services will be available.

more information: www.arapi-autisme.fr

European Citizen’s Prize

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

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What began as a network for exchanging information between parents and families is today a fully-fledged NGO making a significant impact in areas such as autism awareness, advocacy at local and national level and the organisation of socio-cultural activities for children with autism and their families. Despite the fact that the associa-tion was born as a parent organisation, it welcomes applications from anyone interested in or dealing with autism spectrum issues.

First steps in autism advocacy

The main goal of the Rain Children association is to advocate for the rights and interests of people with autism in Lithuania. In this regard, one of its great achievement occurred in 2015. Before this date, diagnosis of autism in Lithuania could only be given for a person under eighteen years of age. Once this person turned eighteen, the autism diagnosis had to be replaced in their medical history by a different diagnosis, in most cases schizophrenia.

The association has been working hard to influence and cooperate with decision-makers from three different ministries: the Ministry of Science and Education, the Ministry of Labour and Social Security and the Ministry of Health and Security. In the case of the latter, the advocacy and advisory work undertaken by the association was very valuable in pushing for compulsory M-CHAT-R diagnosis tests during toddlers’ visits to pediatricians.

As of May 2016, the association has been cooperating with the Ministry of Science and Education to improve the educational process in kindergartens and schools by incorporating scientifically-based thera-pies.

wide range of activities

The different activities organised by Rain Children are key to raising awareness and fostering policy change, as they promote a different approach to autism that allows physicians to give accurate diagnoses, and provide relevant care and continuous support to people with autism. In order to improve the quality of life of people with autism as a whole, the association runs activities such as:

• Organising different awareness-raising events, summer camps and leisure activi-ties for families, seminars for parents and professionals, support groups on social media and mutual support meetings in different cities throughout Lithuania.

• Celebrating World Autism Awareness Day (WAAD). This activity has received endorsement from ambassadors such as the President of Lithuania Mrs. Dalia Grybauskaite in 2014, and the UN Special Rapporteur on health issues for Lithuania, Mr. Dainius Puras.

• Participating in strategic coalitions with other Lithuanian NGOs that share the same mission, vision and values. Accordingly, the association belongs to an informal Children’s Rights Security Coalition at national level that brings together 13 NGOs working in the area of protecting children’s rights. They are also part of the “Mental Health 2030” coalition, which aims to protect the rights of persons with mental disabilities and operates with the support of 20 NGOs and experts.

• Conducting active dissemination activities including wide press coverage (articles, radio and TV interviews, parti-cipation in press conferences, etc.). This activity is essential in order to spread awareness about autism and everything that surrounds it (the lack of support, the main difficulties and challenges faced by autistic people and their families).

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.

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

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Lithuania, “the land of rain”When the questions “What is Lithuania?” and “What is it about?” were asked to a support group on a social media channel for parents of children with autism, one young boy answered: “Lithuania is little, beautiful and sad”. “Why it is sad?”, the parents asked. “Because it is raining here,” answered the child.

It is a fact that rainy weather is quite common in Lithuania. Even the origin of the country’s name is often associated with the word “rain”. This is why this word inspired the Lithuanian Autism Association’s current name: “The Rain Children Association”.

the rain children Association (Lietaus vaikai) is a full member of Autism-europe.more information: www.lietausvaikai.lt

From left to right and from top to bottom: A child enjoying one of the activities during a summer camp; Activities during the WAAD in Vilnius, 2014; Parents attending a training about educational activities; Partici-pants on a summer camp; and NGO’s Christmas charity fair sponsored

by the President of Lithuania, Dalia Grybauskaitė.

New Members

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Pioneers in bulgariaUntil 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 the earliest age possible.

the association also organises numerous activities to achieve its goals:

1. Organising and conducting information campaigns, concerts, awareness-raising events, public debates and seminars in order to ensure public support;

2. Organising training for therapists, specialists and teachers involved in the care and education of children with autism;

3. Developing partnerships with international organisations, specialists and therapists in order to “import” expertise and provide a positive experience to Bulgaria;

4. Performing joint activities with other organisations around the country and abroad for mutual cooperation and exchanging experience;

5. Establishing professional centres for children with autism.

The activities of the Association are funded entirely by donations and funds from projects.

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.

Autism Today provides intervention for children in Bulgaria

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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-gers with autism, improving their quality of life and increasing their chances of living autonomously;

4. Supporting amendments to Bulgarian national legis-lation in the field of education, health and social policy in order to incorporate best practices from throughout Europe and all over the world;

5. Establishing common standards for autism;

6. Changing the perceptions and attitude of society towards children with autism;

7. Providing moral, physical and psychological support to families of children with autism;

8. Working to ensure access to quality education for children with autism in Bulgaria, tailored to their indivi-dual needs and requirements;

9. Working to provide quality health and social care, as well as independence and quality of life, to autistic children, young people and their families in Bulgaria;

10. Protecting the rights of autistic individuals and their families in cases of discrimination and segregation.

Autism Today’s center

Celebrations in Sofia during World Autism Awareness Day 2016

Autism today is an affiliated member of Autism-europe.

more information: www.autismtoday-bg.eu

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covering education and medical service needsJiM have several schools and kindergartens for children with autism. These educational services provide high-quality and “autism-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.

The JiM Foundation is also committed to raising awareness and advocating to provide equal access, rights and opportunities for children with autism, on a par with all other citizens. They have already organised numerous actions and social campaigns (such as the “Poland in blue” initiative or addressing a letter to the Minister of Health aiming at adding obligatory screening tests for children between 16 and 30 months of age to detect autism). At the national and local levels, JiM advocates for equal rights and opportunities for people with autism. Furthermore as it has done for the last two International Congresses, this year JiM is offered grants for delegates to attend Autism-Europe’s 11th International Congress in Edinburgh in September. The grants were open to people from all over the world, both professionals and self-advocates/parents.

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.

15 years creating “a better world for autistic people” in Poland

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the objectives of the Foundation are to:• Provide assistance to disabled individuals, especially

disabled children and young people, as well as their families and relatives;

• Provide assistance to children and young people from families in a difficult financial situation, as well as their families and relatives;

• Provide assistance to care and educational institutions;

• Provide assistance in educating children and young people, especially those from underprivileged backgrounds;

• Foster the inclusion of disabled children and young children in all areas of society;

• Protect and promote wellbeing through the running of a health service centre, general and specialist medical practice, medical activities, specialist therapies, and rehabilitation centres;

• Promote the employment and professional activity of those who are unemployed or at risk of losing their job ;

• Support entrepreneurial development, also among disabled individuals;

• Implement tasks in the area of social assistance, inclu-ding assistance to families and people in vulnerable situations, as well as fostering equal opportunities;

• Provide assistance to people suffering from infectious diseases, such as HIV, especially children and young people.

Parents clubBesides helping persons with autism, the JiM Foundation

has also created a unique network of Parents Clubs. The

JiM Parents Clubs bring together almost 3,000 members in

more than 20 cities all over Poland. Parents and carers have

the opportunity to exchange experiences, give and receive

support in everyday life or crisis situations which signifi-

cantly improves their quality of life.

Tomasz Michałowicz, JiM Foundation CEO, with one of their pupils.

the Jim Foundation is an associate member of Autism-europe.more information: http://jim.org/

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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 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 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 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 centreAs 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 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 (fully equipped) with four areas for entertainment and two rooms for physiotherapy.

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.

Providing educational programmes for children with autism in Saudi Arabia

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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

Professionals and beneficiaries of the Qudurati Centre

Classroom at the Qudurati Centre

the Qudurati centre is a non-european member of Autism-europe.more information: http://qudurati.sa/

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Member Associations of Autism-Europe

FULL MEMBERS (national associations of people with autism and parents)

ARMENIAAutism Overcoming Yerevan, Armenia 9 Arshakuniats St., Tel: +374 91 41 59 83 +374 91 73 90 12 E-mails: mark-as@mail.ru;gabililit@yahoo.com

AUSTRIARainman’s HomeSemeperstrasse 20/2 - 61180 WienTel: +43 1 478 64 34 Fax: +43 478 91 95E-mail: rainmans.home@aon.atWebsite : http://rainman.at/

BELGIUMAssociation Pour l’Epanouissement des Personnes Autistes (A.P.E.P.A.)Rue de l’Aurore 98B-5100 JambesTel: + 32-81-74.43.50Fax: + 32-81-74.43.50E-mail: apepa@skynet.be Website: www.ulg.ac.be/apepa

Vlaamse Vereniging voor Autisme (V.V.A.)Groot Begijnhof 14B - 9040 GentTel: + 32.78.152.252Fax: + 32.9.218.83.83E-mail: vva@autismevlaanderen.be Website: www.autismevlaanderen.be

CZECH REPUBLICČechy Asociace Pomáhající Lidem s Autismem, o.s. (APLA)Dolanská 23, 161 00 Praha 6 - Liboc Tel.: +420 606 729 672E-mail: apla@apla.cz Website: http://www.praha.apla.cz/www.autismus.cz

CROATIACroatian Society For Autism (S.H.P.A.C.)Dvorniciceva 610000 ZagrebTél : + 385.51.551.344Fax : + 385.51.551.355E-mail : lidijap@gzr.hr Site internet : www.autizam-uzah.hr

DENMARKLandsforeningen AutismeBlekinge Boulevard 22630 TaastrupDenmarkT: 0045 70 25 30 65E: kontor@autismeforening.dkW: www.autismeforening.dk

FINLANDFinnish Association for Autism and Asperger’s Syndrome Nuijamiestentie 3 B00400 HelsinkiTel: + 358.9.77.42.770E-mail: info@autismiliitto.fiWebsite: www.autismiliitto.fi

FRANCEAutisme France1175 Avenue de la République06 550 La Roquette sur Siagne Tel: + 33.4.93.46.01.77Fax: + 33.4.93.46.01.14E-mail: autisme.france@wanadoo.frWebsite: www.autismefrance.org

Sesame Autisme53, rue ClissonF - 75013 PARISTel: + 33.1.44.24.50.00Fax: + 33.1.536.12.563E-mail: sesaut@free.fr Website: www.sesame-autisme.com

GERMANYAutismus DeutschlandRothenbaumchaussee 15D - 20148 HambourgTel: + 49.40.511.56.04Fax: + 49.40.511.08.13E-mail: info@autismus.de Website: www.autismus.de GREECEGreek Society for the Protection of Autistic People (G.S.P.A.P.)2, Athenas StreetGR-10551 AthensTel: +30.210.321.6550Fax:+30.210.321.6549E-mail: gspap@autismgreece.gr Website: www.autismgreece.gr

HUNGARYHungarian Autistic Society (HAS)Fejér György u. 10. I./23.1053 BudapestTel: +36 1 301 9067/354 1073Fax: +36 1 302 1094Email: autist@interpont.hu or info@esoember.hu Website: www.esoember.hu ; www.autista.info.hu ; www.aosz.hu

ICELANDEinhverfusamtökinHaaleitisbraut 11-13IS - 108 ReykjavikTel: +354 562 1590E-mail: einhverfa@einhverfa.is Website: www.einhverfa.is

IRELANDIrish Society For Autism (I.S.A.)16/17 Lower. O’Connell StreetIRL - 1 DublinTel: + 353.1.874.46.84Fax: + 353.1.874.42.24E-mail: admin@autism.ie Website: www.autism.ie

ITALYAssociazione Nazionale Genitori Soggetti Autistici Onlus (A.N.G.S.A.)Via Casal Bruciato 13I - 00159 RomaTel : + 39.06.43.58.76.66Fax: + 39.081.807.13.68E-mail: angsanaz@tin.itWebsite: www.angsaonlus.org

LITHUANIALietaus vaikai (Rain Children)Pylimo str. 14A/3701117 VilniusTel: +370 620 206 65Email: info@lietausvaikai.ltWebsite: www.lietausvaikai.lt

LUXEMBOURGFondation Autisme Luxembourg68, route d’Arlon L-8310 CapellenTel: +352-26 91 11 1Fax:+352-26 91 09 57Email: education@fal.luSite Internet : www.fal.lu

MALTAAutism Parents Association (APA)P.O.BOX 30MarsaMTP 1001Email: autismparentsassociation@gmail.com Website: www.autismparentsassociation.com

THE NETHERLANDSNederlandse Vereniging voor Autisme (N.V.A.)Weltevreden 4aNL 3731 AL De BiltTel: + 31.30.229.98.00Fax: + 31.30.266.23.00Email: info@autisme.nl Website: www.autisme.nl

NORWAYAutismeforeningen I Norge (A.I.N.)Postboks 6726 EtterstadN - 0609 OsloTel: + 47- 23 05 45 70Fax : + 47- 23 05 45 61/51E-mail: post@autismeforeningen.noWebsite: www.autismeforeningen.no

PORTUGALFederacao Portuguesa De AutismoRua José Luis Garcia Rodrigues Bairro Alto da Ajuda P-1300-565 LisboaTel: + 351.21.363.0040Fax: + 351.21.361.6259E-mail: fpda@fpda.pt Website: www.fpda.pt

ROMANIAFedra22 Decembrie street no. 23Maramures Baia MareE-mail: autismbaiamare@gmail.com

SERBIASerbian Society for AutismGundulicev venac Street, 4011 000 Belgrade, SerbiaTel/Fax: +381 11 3391-051E-mail: autizamsrbija@sbb.rs Website : www.autizam.org.rs

SLOVAKIASpoločnosť na pomoc osobám s autiz-mom (S.P.O.S.A.)Namestie 1.maja 1.POBOX 89810 00 SK- Bratislava 1Phone + 421 915 703 708E-mail: sposa@changenet.sk Website: www.sposa.sk

SPAINAsociación de padres de niños y niñas autistas de Bizkaia (APNABI)C/.Antonio Guezala, lonjas 1 y 2E - 48015 BilbaoTel: + 34.94.475.57.04Fax: + 34.94.476.29.92E-mail : autism@apnabi.orghttp://www.apnabi.org/

Autismo BurgosC/ Valdenunez, 8E - 09001 BurgosTel: + 34.947.46.12.43Fax: + 34.947.46.12.45E-mail: autismoburgos@autismobur-gos.org Website: www.autismoburgos.org

Autismo-EspañaC/ Eloy Gonzalo 34 1°E - 28010 MadridTel: + 34.91.591.34.09Fax: + 34.91.594.18.31E-mail: confederacion@autismo.org.es Website: www.autismo.org.es

Federacion Española De Autismo (F.E.S.P.A.U.)c/ Atocha, 105E - 28012 MadridTel: + 34.91.290.58.06/04Fax: + 34.91.290.58.10E-mail: autistas@fespau.esWebsite : www.fespau.es

GautenaP.O. Box 1000E - 20080 San SebastianTel: + 34.943.21.53.44Fax: + 34.943.21.52.39E-mail: info@gautena.orgWebsite: www.gautena.org

SWEDENAutism- och Aspergerförbundet Bellmansgatan 30S- 118 47 StockholmTel: +46 8 702 05 80Fax: + 46.86.44.02.88E-mail: info@autism.seWebsite: www.autism.se

SWITZERLANDAutisme SuisseAssociation de ParentsNeuengasse 192501 BielTel: 032 322 10 25Tel: + 41.31 911 91 09E-mail: sekretariat@autism.chWebsite: www.autismesuisse.ch

THE NETHERLANDSNederlandse Vereniging voor Autisme (N.V.A.)Weltevreden 4cNL 3731 AL De BiltTel: +31.30.229.98.00Fax: +31.30.266.23.00E-mail: info@autisme.nlWebsite: www.autisme.nl

UNITED KINGDOMNational Autistic Society (N.A.S.)393 City RoadLondon EC1V 1NGTel: + 44.20.7833.2299Fax: + 44.20.7833.9666E-mail: nas@nas.org.ukWebsite: www.nas.org.uk

Scottish AutismHilton House, Alloa Business Park Whins RoadAlloa FK10 3SA - ScotlandTel: + 44.1.259.72.00.44Fax: + 44.1.259.72.00.51E-mail: autism@scottishautism.org Website: www.scottishautism.org/

AFFILIATED MEMBERS (regional associations of people with autism and parents)

BULGARIAAutism Today Association1738 Sofia2 Vitosha StreetTel: +359 887 366 067; +359 887 206 206Email: autismtodayaba@gmail.com Website: http://www.autismtoday-bg.eu/

ESTONIAEstonian Autism Society (E.A.S.)Rahu 8EST - Tartu 50112Tél: + 372.557.9980E-mail: autismeesti@gmail.com

FRANCEAbri MontagnardF - 64490 Osse-en-AspeTel: + 33.5.59.34.70.51Fax: + 33.5.59.34.53.21E-mail: ritathomassin@neuf.frWebsite : http://fratrieabri.free.fr/

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Autisme Poitou-CharentesMonsieur Jean Marie Baudoin 23, rue Noir 79000 Niort Tel: + 33.549.24.14.87 E-mail: fbas@lundbeck.com.

Dialogue Autisme BP 24845162 Olivet CedexTel: +33 02 38 66 34 75 Fax: +33 02 38 66 34 75E-mail: dialogue-autisme@voilà.fr

ITALYAssociazione Nazionale Genitori Soggetti Autistici Lombardia (ANGSA Lombardia) Via B. Rucellai 36 I - 20126 Milano MITel: + 39-02-67.49.30.33 Fax: + 39-178-2282858 E-mail: segreteria@angsalombardia.it Site internet: www.angsalombardia.it

Fondazione Oltre Il Labirinto OnlusMario PaganessiVia Botteniga, 831100 TrevisoTel/Fax: +39-345-5510560W: www.oltrelabirinto.it

Associazione Diversamente OnlusVia Carlo Pisacane, 2909134 Cagliari Pirri Tel: 0039 (0)3338944791Email: info@diversamenteonlus.orgWebsite: www.diversamenteonlus.org

LATVIALatvijas Autisma apvienībaTorņa street 4 LV-1050, RīgaE-mail: info@autisms.lvWebsite: www.autisms.lv

PORTUGALAssociação Portuguesa para as Pertur-bações do Desenvolvimento e Autismo (A.P.P.D.A.-Lisboa)Rua José Luis Garcia RodriguesBairro Alto da AjudaP - 1300-565 LisboaTel: + 351.21.361.6250Fax: + 351.21.361.6259E-mail: info@appda-lisboa.org.pt Website: www.appda-lisboa.org.pt

SPAINAutismo GaliciaRua Home Santo de Bonaval no 74-bajoE - 15703 Santiago de CompostelaTel: + 34.981.589.365Fa : + 34.981.589.344E-mail: info@autismogalicia.org Website: www.autismogalicia.org

Fundacio Congost AutismeRonda del Carril 7508530 - La Garriga - Barcelona - SpainTel: +34-93-871.47.57Fax: +34-93-871.48.02E-mail: congostautisme@autisme.comWebsite: www.autisme.com

Nuevo HorizonteAvda de la Communidad de Madrid, s/nE - 28230 Las Rozas de MadridTel : + 34.91.637.74.55Fax : + 34.91.637.77.62E-mail: asociacion@nuevohorizonte.esWebsite: www.nuevohorizonte.es

Fundacion Mas Casadevall (FMCA)Apartat de Correus 172E-17820 Banyoles (El Pla de l’Estany-Girona)Tel: +34.972.57.33.13Fax: +34.972.58.17.12E-mail: info@mascasadevall.net Website: www.mascasadevall.net

SWITZERLANDAutisme Suisse Romandeav. de la Chablière 4CH - 1004 LausanneTél. +41 21 646 56 15E-mail: info@autisme.chWebsite : www.autisme.chUNITED KINGDOMAutism Initiatives7, Chesterfield Road, Merseyside Liverpool L23 9XL Tel: + 44.1.51.330.95.00Fax: + 44.1.51.330.95.01E-mail: ces@autisminitiatives.org Website: www.autisminitiatives.org

SpectrumSterling Court, Truro Hill, Penryn, FalmouthUK - TR10 8AR CornwallTél: + 44.1.326.371.000Fax: + 44.1.326.371.099E-mail: mail@spectrumasd.org Site Internet: www.spectrumasd.org

Autism AngliaCentury House – Riverside Office CenterNorth Station Road, Colchester C01 1RE EssexTel: +44 (0) 12 06 577678Fax: + 44 (0) 1206 578581E-mail: info@autism-anglia.org.uk Website: www.autism-anglia.org.uk

Autism Northern Ireland (N.I. Autism/PAPA)Donard, Knockbracken Healthcare Park, Saintfield RoadBelfast BT8 8BHTel: + 44.28.9040.1729Fax: + 44.28.9040.3467E-mail: info@autismni.org Website: www.autismni.org

Autism East MidlandsMr. Philip CarpenterPark Hall Resource CentrePark Road, Bestwook Village Nottingham NG6 8TQTel: 0044 (0)115 976 1805Fax: 0044 (0)115 976 1356Email: info@NORSACA.org.uk Website: http://www.norsaca.org.uk

Autism East MidlandsMr. Philip CarpenterUnit 31 Crags Industrial EstateMorven StreetCreswellWorkshop Nottinghamshire S80 4AJTel: 0044 (0)1909 506 678E-mail: info@autismeastmidlands.org.uk Website: www.autismeastmidlands.org.uk

ASSOCIATE MEMBERS

ALBANIAFondacioni Femijeve ShqiptareFondacioni Femijeve ShqiptareRr.” Deshmoret e 4 Shkurtit”, Pall. nr. 30Kati II, pas Akademise se ArteveTirane AlbanieTel: + 355.4.2270663 Email: info@albanianchildren.org Website: www.albanianchildren.org

FRANCEE.D.I. Formation21, Avenue CévouleF- 06220 Golfe JuanTel: + 33 4 93 45 53 18 Fax: + 33 4 93 69 90 47E-mail: ediformation@wanadoo.frWebsite: www.autisme-formation.net

Union Nationale des Associations de Parents et Amis de Personnes Handica-pées Mentales (U.N.A.P.E.I.)15, Rue CoysevoxF - 75876 Paris Cedex 18Tel: + 33.1.44.85.50.50Fax: + 33.1.44.85.50.60E-mail: public@unapei.orgWebsite: www.unapei.org

ITALYAssociation des Parents et Amis des Malades d’Autisme (A.P.A.M.A.)c/o P.A.M.A.P.I. Scuola ‘Amerigo Vespucci’Via Bolognese, 238I - 50139 FirenzeTel: + 39.05.54.00.594Fax: + 39.05.54.00.594

A.P.R.I.C/o ANFFAS Via Rasi, 14I - 40127 BolognaTel: + 39.051.24.45.95Fax: +39.05.124.95.72E-mail: hanau.carlo@gmail.com

MALTAInspire (The Eden & Razzett Founda-tion)Bulebel Zejtun ZTN 3000 MaltaTel: +356 21807708Website: www.inspire.org.mt

THE NETHERLANDSDr. Leo KannerhuisHoutsniplaan 1 Postbus 626865 ZH DoorwerthTel: + 31.26.33.33.037 Fax: + 31.26.33.40.742 E-mail: info@leokannerhuis.nl Web-site: www.leokannerhuis.nl

POLANDFundacja Wspólnota Nadziei (Com-munity of Hope Foundation)Więckowice, ul. Ogrodowa 1732-082 BolechowiceTel: +48.12.378.43.58 Fax: +48.12.378.43.59 Email: biuro@farma.org.plWeb Site: www.farma.org.pl

Synapsis FoundationUl. Ondraszka 302-085 WarsawaTel/fax: +48.22.825.77.57E-mail: fundacja@synapsis.waw.plWebsite: www.synapsis.waw.pl

JiM FoundationUl. Tatrzańska 10593-279 ŁodźTel: 0048 42 643 46 70Email: Help@Jim.org Website: www.jim.orgFacebook: https://www.facebook.com/jimhelp/

RUSSIAOur Sunny WorldRehabilitation Centre for Disabled Children Lutchevoy proseck 31071131 Moscow Tel: 007 (0)499 2680206Website: http://solnechnymir.ru

UKRAINEChild With Future21/16, Skovorody Str.Kyiv 04070UkraineTel: +38 (044) 585 36 08E-mail: info@cwf.com.uaWebsite: www.cwf.com.ua

NON EUROPEAN MEMBERS

KUWAITKuwait Centre For AutismP.O. Box 33425Al-Rawda 73455KuwaitEmail: kwautism@gmail.com

MOROCCOA.P.A.E.I.Rue 9 Avril - MaârifCasablancaTel: + 212.(0)5 22.25.81.43Fax: + 212.(0)5 22.25.57.11Email: Ass_apaei@hotmail.fr

SAUDI ARABIAQudurati CentreAL QassimBuraydahAl Montazah AreaSouth of al Montazah GardenTel: + 966 1 638 18555 : + 966 505 283 433 (mobile)Fax: + 966 1 638 23433Email: qudurati@hotmail.com; mus-tafa681@hotmail.co.uk