N o 5258 December 2012 English edition

Autism - Europe

The challenges of an ageing population

New dental health program in France in emergency situations Fitting in at a mainstream school Autism-Europe International Congress 2013: Keynote speakers announced

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

For Diversity Autism Europe aisbl Rue Montoyer, 39 • B - 1000 Brussels, Belgium Tel.:+32-2-675 75 05 - Fax:+32-2-675 72 70 Against Discrimination Email: [email protected] Website: www.autismeurope.org SUMMARY

ActivitIEs - The challenges of an ageing population...... 3 - European strategies for autism ...... 6 Dear friends, NEWS AND FEATURES In this issue, you will find a special feature about ageing and - New dental health program in France ...... 8 autism. As 2012 was the European Year for Active Ageing - Autism in emergency situations ...... 12 and Solidarity between Generations, it was important to - Fitting in at a mainstream school ...... 14 raise awareness of the fact that people with autism grow old too. To most of us it sounds obvious, however, as the International Autism-Europe CongrESs condition of autism is still a relatively recent discovery and - Keynote speakers announced & other news...... 18 the number of diagnoses has grown exponentially over the past 30 years, the general public often tend to associate NEWS IN BRIEF ...... 20 autism with children and younger people. At Autism- Europe, we felt it was important to use this European Year NEW membERs as an opportunity to highlight the challenges faced by - Latvian Autism Association ...... 21 people with autism and their families as they grow older. We produced a report titled ‘Towards a better quality of LIST OF membERs...... 22 life – the rights of ageing people with autism’ and we will continue to work on the issues surrounding autism and ageing in the future.

Becoming older also means celebrating birthdays! In 2013, Autism-Europe is looking forward to a double celebration: our 30th anniversary and our 10th international congress that will take place in Budapest, Hungary on Collaborators September 24 to 26, 2013. We look forward to meeting old and new friends on this occasion! You can take a first glimpse at the congress programme by discovering Editorial Committee : Zsuzsanna Szilvasy some of the confirmed keynote speakers on page 18. Evelyne Friedel Harald Neerland Maria Wroniszewska This issue of LINK also contains a lot more; for example, on page 14 you will Claude Schmit discover the story of a Flemish mother named Inge and her daughter Margot, who Aurélie Baranger share their experiences and tips on how a person with autism can be included more Editing, writing & coordination : effectively by their teachers and peers at school. Nikki Sullings

Editorial Assistant : As many parents know, making life easier for people with autism requires every Miren Hurtado situation to be planned, but what about emergency situations? In some countries, Translation : autism organisations have developed plans to prepare for, and deal with, the Dominique Theunis Marie Dubost unexpected (page 12). Magali Vlayen

Layout & printing : Other countries have adopted specific comprehensive national strategies for mmteam sprl - +32-2-262 16 50 - Frédéric Maigret autism that span various sectors (health, education, employment, housing) and Website : http://fredmmteam.wix.com/mmteam aim to support people with autism throughout their lifespans. Autism-Europe Cover : was pleased to hold a seminar in cooperation with the Celtic Nations Autism Michael Baron (right) and his adult son Timothy (left) who has autism

Partnership at the European Parliament in November in which the Celtic nations Autisme-Europe shared their experiences and expertise with their European counterparts and Rue Montoyer 39 • B-1000 Brussels • Belgium Tel.: +32-2-675 75 05 raised awareness among the Members of the European Parliament on the impor- Fax: +32-2-675 72 70 tance of these strategies (page 6). Email: [email protected] Website: www.autismeurope.org

We hope that you will enjoy this edition of LINK, and please remember that these Account number : pages are here to highlight important news and good practices in the field of Belfius Bank : IBAN : BE21 0682 0816 9303 / BIC : GKCCBEBB autism, so do not hesitate to share your news and experiences with us! Reproduction of articles is permitted provided that AUTISM-EUROPE is acknowle- dged as the source, with the exception of articles with a © symbol at the end of the article. Articles and information for future issues of LINK are welcome. They Sincerely, should be sent to the address above.

LINK est aussi publié en français. Si vous souhaitez recevoir notre revue en français, veuillez en avertir notre secrétariat à l’adresse ci-dessus. Zsuzsanna Szilvasy Aurélie Baranger President Director Published with the support of the Directorate-General Justice of the European Commission, under the European Community Programme for Employment and Social Solidarity, PROGRESS.

For Diversity

Against Discrimination

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

Facing the challenges Image: Michael Baron (left), 86 year-old father of Timothy (right), an of an ageing population adult with autism.

The ageing population is a phenomenon that is challenging policy makers around the world. In Europe, the percentage of the population aged 65 years or over is expected to increase from 18 percent in 2010 to 30 percent by 2060. With around 1 in 150 people currently being diagnosed with an disorder, this means there is a large – and growing – number of ageing adults with autism whose needs have not yet been considered in most countries. A new report* by Autism-Europe ad- dresses the key challenges faced by ageing people with autism and their families, in the context of their rights and emerging best practices in the field from around Europe.

Throughout the developed world, people are living longer and Lack of support in better health conditions. Thus, the same general trend exists among people with autism (although their life expectancy remains Whether an individual has received a diagnosis or not, lack of somewhat shorter). While ageing people with autism have many support is widespread among adults with autism. In the United of the same needs as ageing people, there are Kingdom, a survey conducted by the National Autistic Society some additional factors linked to autism that can increase their revealed that among adults who have received a diagnosis of health care needs such as gastrointestinal problems, insomnia, autism, 71 percent of respondents aged over 45 years have not epilepsy, autoimmune problems and side effects of medications. had their needs formally assessed, let alone met by any services. In addition, they also experience higher rates of depression and This lack of support can have dramatic consequences, leading people with autism to be at higher risk of poverty and more likely anxiety than the general population. to become homeless than the general population. Access to a diagnosis

One of the foremost issues to consider in relation to adults with “There is currently no place in Brussels for supported housing autism is the fact that so many have never received a formal facilities. I visited 20 care homes, all of them are full. My son is diagnosis. Many individuals who were born prior to widespread very withdrawn, anxious and depressed. Who will support him knowledge of autism among the medical profession – or even when I’m gone?” prior to the original definitions of autism and – have not received a diagnosis or been in contact with specialists A Belgian mother who is sick and has been a widow for several years, at all. Yet, studies show that the prevalence rate of autism is likely worries about the future of her 36 year-old son who has autism and epilepsy. to be the same for adults as it is for children who are diagnosed with autism in Europe today – around 1 in 150 people. Without a diagnosis, or awareness of one’s condition, it can be impossible Lack of appropriately trained staff to access appropriate services. In addition, some older individuals In the positive cases where older people with autism are in contact with autism have received incorrect diagnoses in the past and with relevant services, there is often a lack of appropriately trained continue to receive inappropriate treatments. staff that can address their needs. In addition, around Europe services for people with disabilities have been hit very hard by the ongoing financial crisis, with social services being forced to cut staff or even close down in some countries.

“States Parties undertake to adopt immediate, effective and appropriate measures to combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life.” - United Nations Convention on the Rights of Persons with Disabilities, Article 8. b.

Page 3 The National Autistic Society Autistic The National

What will happen to people with autism when Rights and age-sensitive approaches their parents are too old to provide care? While people with autism clearly have rights granted under the As the minimal resources available for people with autism have UN Convention on the Rights of Persons with Disabilities, these been further reduced, the responsibility to provide care has fallen are not always implemented in an age-sensitive manner across onto families. In fact, throughout the European Union informal Europe. These rights should be enhanced, protected and enforced family care is the main form of long-term care for older people by appropriate legislation in each state, as well as sensibly adapted with autism. Therefore, the greatest concern for most families to the changing needs of people with autism as they get older. of adults with autism is who will care for them when the parents are no longer able to do so. Older parents and siblings often need Best practices to support ageing people with support and adaptations for themselves as they also undergo the process of ageing, and caring for a person with autism during their autism and their families own old age is not always possible. Families and informal carers rarely receive sufficient support for their role, and are often disad- There are some inspiring examples of support for the specific needs vantaged as a result. In the United Kingdom, the cost of supporting of older people with autism and their families in Europe. Hinnerup people with autism and the opportunity costs of lost productivity Kollegiet in Denmark, for example, is a permanent home for some were estimated in 2009 at £28 billion per year. of the oldest people with autism in Europe. Following the principle of enabling people with autism to remain Increased risk of social exclusion in their homes as they age, some of the residents at Hinnerup have lived there for 30 years. Residents are enabled to live with the Older people are at higher risk of social exclusion than the general greatest degree of autonomy possible, according to their individual population. When this is coupled with the communication and capabilities. Families are able to visit, yet they are relieved of the social interaction problems affecting all people with autism, older responsibilities of full-time care provision. people with autism face an extremely high risk of social exclusion.

National Autistic Society begins ‘Autism in Maturity’ Project

The National Autistic Society (NAS) in the United Kingdom has embarked on a new project to support adults with autism as they move into middle and older age. The project is developing useful information and resources for adults with autism, their families, supporters and care providers, many of which are now available on the NAS website.

More information: http://www.autism.org.uk

Image: the ‘Autism in Maturity’ section of the National Autistic Society ’s website provides some useful resources.

Page 4 Autism - Europe Sharing best practices to address the challenges of ageing Image (opposite page, left): Listening to the views of older people with autism in the United Kingdom. Image (opposite page, right): In Denmark, Ann is working at the local school for some hours every day. She takes care of the teachers, makes coffee, cleans the kitchen, waters the plants and receives a lot appreciation Autism-Europe held a series of events focused on the theme from the teachers. She likes it when the teachers make her laugh, so they do that a lot. Image (above): An older woman with autism in her home in Sweden. of autism and ageing during the European Days of Autism in Lyon, France, in October last year.

As the ageing process brings health-related changes for residents, The events aimed to bring together professionals, parents and regular medical checks are scheduled and appropriate medical care is people with autism who are concerned with the challenges of facilitated. ageing and to highlight best practices in the field.

Hinnerup also aims to integrate its residents into their local community These events included: to avoid the risk of social exclusion. Some residents work close to home • A public conference; in associated day care services, or at the local school. Residents also • A study visit to Sésame Village in Messimy, a residential care engage in a wide range of local leisure activities organised by the staff. centre for elderly people with autism; • A roundtable discussion with adults who have Asperger’s Individual goals are set together with the residents and the trained staff syndrome. continuously aim to promote understanding through adapted commu- nication frameworks. The events in Lyon were held by Autism-Europe in conjunction with French host member, Sésame Autisme, and Canadian * The contents of this article, including statistics and references, are taken from Autism- Europe’s new report titled ‘Towards a better quality of life – The rights of ageing people autism organisation, TED sans Frontières. The events also took with autism’. place as part of the European Year for Active Ageing and Solidarity between Generations 2012.

Presentations that were given at these events are available online at: www.autismeurope.org/activities/european-days-of-autism

Autism-Europe releases report on ageing and autism

Autism-Europe has just released a report titled ‘Towards a better quality of life – the rights of ageing people with autism’, which identifies some of the key challenges faced by adults with autism and their families. The report puts these challenges in the context of their rights under the United Nations Convention on the Rights of Persons with Disabilities Sciences PO, Lyon. and highlights emerging best practices in the field from Image: At the public conference on autism and ageing in Lyon. around Europe.

Download the report: www.autismeurope.org

Page 5 Calling for a more strategic response to the needs of 3.3 million Europeans with autism

Across Europe, people with autism have the right to diagnosis, interventions, education and all the various forms of support that they urgently require. Yet, in the majority of European countries, just getting an accurate diagnosis of autism, let alone access to appropriate interventions and support, can be very difficult. The European Union must take a more strategic approach to addressing the multitude of difficulties faced by people with autism and their families.

In 1996, the European Parliament adopted Autism-Europe’s Then, access to education is a similarly large hurdle. In 2002, France ‘Charter for Persons with Autism’, outlining their human rights. was condemned by the Council of Europe under the European Further, in 2009 the Council of Europe issued the ‘Recommendation Social Charter4 for failing to provide access to mainstream schools on the education and social inclusion of children and young for children with autism who need only a low level of support and people with autism spectrum disorders’1 in cooperation with failing to provide adequate specialist education for those who Autism-Europe. In 2010, the European Union, along with most require a higher level of support. Ten years later, despite the of its member states, officially acceded to the United Nations adoption of an ambitious plan for autism in France, the situation Convention on the Rights of Persons with Disabilities, thereby remains largely unimproved. committing to its binding obligations. Yet, despite the many steps taken at the European level to reassert these rights, implementa- In adulthood, people with autism continue to experience a high tion remains far from adequate. level of discrimination and lack of opportunity, and remain particu- larly excluded from society. A recent survey of adults with autism Even in the United Kingdom, where diagnosis and intervention in the United Kingdom found that only 15 percent are in full-time for autism are among the best in Europe, the average age for paid employment, and among those who have worked, around a diagnosis of autism is five years (yet it is possible to diagnose the third reported they had experienced bullying, unfair treatment or condition from around the age of eighteen months to two years)2. discrimination at work because of their autism.5 Following diagnosis, appropriate interventions and services for people with autism are often under-funded and overwhelmed by Where states fail, it is usually parents and family members who the number of people in need. In Belgium, for example, waiting step in to fill the gaps for people with autism. Caring for a person periods to access services can be up to five years in length.3 with autism who is in need of a high level of support, as well as searching for and coordinating interventions and services for them can be a full-time job. In the United Kingdom, the cost of supporting people with autism and the opportunity costs of lost productivity were estimated to be £28 billion per year6.

In fairness, the situation across Europe is diverse and there are good models of support available in some countries. For example, in Wales and Sweden, people with autism are now supported through a broad range of well-coordinated publicly funded initia- tives and services. Over the past decade, Wales has developed a successful national strategy in which policies are coordinated across a range of fields – education, health, justice, employment, social care, research and others – to ensure that the rights of people with autism are upheld and their needs are met (see article on the Welsh strategy in edition 55 of LINK).

While respect for fundamental rights is paramount, the long-term gains across Europe can also be financial. A recent study by Dr Michael Ganz from the Harvard School of Public Health, demon- strated that while the cost of support during early childhood [when it can be most beneficial] can have a high upfront cost, if it is successful it can lead to many cost savings later in life7.

Image: At Autism-Europe’s event at the European Parliament in November 2012.

Page 6 Autism - Europe In this context, Autism-Europe is calling for a more strategic approach to autism across the European Union. While of course, implementation of the UN Convention on the Rights of Persons with Disabilities is mainly the responsibility of the Member States, there is much that can be done at the European level, including monitoring the implementation of the Convention (a task which is already underway), data collection, standardisation of diagnostic Image: Welsh MEP practices and services, research and capacity building initiatives Kay Swinburne signing her for autism support organisations, as well as exchange and promo- support in working tion of evidence-based practices. towards a Euro- pean strategy for autism. Considering that more and more people are diagnosed with autism and that the prevalence rate currently sits around 1 in 150 people in Europe, the EU can’t afford not to invest in addressing Autism strategy event held the needs of people with autism. at the European Parliament

1 Recommendation CM/Rec(2009)9 of the Committee of Ministers to member states on in Brussels the education and social inclusion of children and young people with autism spectrum disorders, https://wcd.coe.int/ViewDoc.jsp?id=1526657&Site=CM A seminar on strategies for autism at national and 2 Howlin P. and Asgharian A. (1999), ‘The diagnosis of autism and Asperger syndrome: European level was held at the European Parliament in findings from a survey of 770 families’, Developmental Medicine and Child Neurology, Brussels on November 6, 2012. 41, pp.834-839. 3 Inforautisme a.s.b.l. (2006), Autirecherche 2006 - Enquête sur les besoins de la popula- At this mutual learning focused event, around 50 partici- tion bruxelloise, francophone, adulte avec autisme, http://www.inforautisme.be/GAMP/ pants from 10 European countries had the opportunity to GAMP_chiffres_GD.doc discuss the processes involved in, and benefits resulting 4 Autism-Europe (2004), Autism-Europe and the collective complaint against France, from, adopting an autism strategy. The ‘Autism Spectrum http://www.autismeurope.org/campaigns/right-to-education/ae-and-the-collective- Disorders Strategic Action Plan for Wales’ was showcased complaint-against-france/ as an example of how a national autism strategy can achieve 5 National Autistic Society (2012), The way we are: autism in 2012, http://www.autism. outcomes such as improved access to diagnosis, interven- org.uk/Get-involved/50th-birthday/Survey-report.aspx tion, support, education, training and employment for people 6 Knapp M, Romeo R & Beecham J (2009), ‘Economic cost of autism in the UK’, Autism, with autism. The latest developments in Northern Ireland, 13(3), pp.317–36. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0042137/ where an autism strategy and action plan are currently being 7 Ganz ML (2007), ‘The Lifetime Distribution of the Incremental Societal Costs of Autism’, developed, were also presented. Pediatrics & Adolescent Medicine, 161, pp.343-349, http://archpedi.ama-assn.org/cgi/ content/full/161/4/343 The seminar was held by Autism-Europe in conjunction with the Celtic Nations Autism Partnership, and hosted by Welsh MEP, Kay Swinburne. At the event, MEPs and national government representatives signed their support for a more strategic approach to autism in Europe.

Page 7 News & Features

The PASO programme: Dental health care for people with autism

By Eric-Nicolas Bory, Anne Michelet and Sandra Miranda

An appointment with the dentist can be a stressful experience for anyone, but for people with autism and their families it can be even more traumatic. In France, several organisations have teamed up to devise a new programme to support people with autism and their families to reduce their anxieties and get the dental care they need.

The Autism and Dental Health Programme (in French, the Programme Autisme & Santé Orale (PASO)) aims to provide a dental health care process (preven- tion, screening, education about dental health, care, follow-up, etc.) that is adapted to children and adolescents with autism, and provided in ordinary dental surgeries and health care centres. Several adapted communication tools have been developed and made available to families in order to help them to prepare the person with autism for visits to the dentist and preventative dental care at home. Specific support, recommendations and guidance are provided to families and professionals to make dental care accessible over the long term.

The PASO Programme and its adapted communication tools use the behav- ioural learning method called TEACCH (Treatment and Education of Autistic and related Communication-handicapped CHildren). This method, devised by , is based on a structured approach to time, space and communi- cation.

Page 8 Autism - Europe The programme in practice

Step-by-step care

To prepare the patient carefully for dental care is fundamental as it will allow him or her to become familiar with the dental surgery environment. The involvement of the patient’s family and or carers in the preparation process is also essential for successful dental care.

1. Request for care

First, a request for dental care is made by the family or by a relevant health professional. Then, a medical and administrative file is created for the patient with autism.

2. Information session for families

A meeting is arranged between the family and the PASO Programme Manager, Dr Miranda, who provides information on the steps and practical methods that are involved in the programme. The family also receives an information and liaison book containing information that assists them to prepare in advance for each session as well as space for notes and assessments that can be shared between the dentist, parents and carers.

3. Dental health education sessions

Preparatory visits at a simulated dental surgery are conducted to facilitate future dental care sessions. A dental surgeon establishes a personalised education programme and provides advice on dental health and hygiene. Several dental health education sessions are provided for the patient to ensure that he or she becomes familiar with the dental surgery environment.

4. Preparation at home

Communication tools are provided to the family one step at a time. A manual and an educational video are also used to help the family to use their informa- tion and liaison book effectively.

The family uses the communication tools (pictograms, sound tracks, comics, etc.) on a regular basis to prepare for forthcoming visits to the dentist and tries to apply the dental surgeon’s advice on dental hygiene.

Page 9 5. Transition visit

At this important visit, the patient with autism and his or her family meet the dentist for the first time. The patient discovers the dental surgery where he or she will receive dental care. The transition visit is conducted in various stages:

• Introduction to the administrative and medical staff members; • Introduction to the dental surgery, tools and equipment; • Oral-dental examination; • Dental x-rays (when necessary); • Establishment of an oral-dental care programme.

The first visit allows the dentist to determine the context in which dental care will be provided. A personalised approach is designed according to the needs of the patient.

6. Dental care sessions

The dental surgeon will continue to follow the individual programme that has been established for the patient’s dental care. The dental surgeon will then provide guidance to the family in order to facilitate the follow-up care that is required.

7. Follow-up

A check-up visit is scheduled every 6 months. The communication tools are used on an ongoing basis to reinforce the patient’s understanding of dental health and visits to the dentist.

Page 10 Autism - Europe PASO is a comprehensive programme Pilot study in the Rhône-Alpes region comprised of three pillars:

The PASO Programme has conducted a pilot study in the • PASO-RDE: Research, development and evaluation. Rhône-Alpes region of France with the aim to determine Developed by SOHDEV; the effectiveness of the programme before its methods are • pASO-F: Training. Developed by SOHDEV; adopted elsewhere. • pASO-PEC: Care. Set up by the SBHD-RA Network in the Rhone-Alps Region; The PASO programme is considered to have been beneficial when: • The patient has started to brush his or her own teeth or has improved his or her tooth brushing skills; The PASO Programme’s • The patient accepts dental care more easily; • The patient’s anxiety level remains stable or decreases with objectives are: each session. • To provide families and professionals with adapted communication tools; Programme outcomes • To provide personalised dental care programmes, in (as at 15/7/2012) cooperation with the parents and professionals; • To encourage the patients’ cooperation in daily dental a. Beneficiaries hygiene practices and in dental procedures at the surgery; • Number of participants: 53; • To provide people with autism with access to preventative • Average duration of participation in the programme: dental care; 10 months; • To facilitate the dental care process in an ordinary environ- • Average age of participants when commencing the programme: ment. 8 years old; • 19% girls, 81% boys.

Notably, 77% of the participants had failed to find adapted care before they joined the PASO programme. Communication tools developed in b. The results analysed are based on 48 children and adolescents who have received between 1 and 6 dental health education the PASO programme sessions. Two-thirds of these children have followed the PASO programme in its entirety and are currently in the follow-up phase. The PASO programme has developed a range c. Conclusions of tools that can be used • Improved daily dental hygiene practices in most of the children to support people with and adolescents; autism in their dental care • Decrease in the prevalence of dental plaque (a soft deposit of programmes, including: food debris and saliva that adheres to the surface of the teeth and gums) from 86% to 38%; • Information and liaison • Decrease in the prevalence of gingivitis (inflammation of the book; gums with bleeding) from 45% to 13%; • An image bank of • No increase in the existing anxiety levels of patients resulting photos and picto- from dental procedures. grams; • Comic strips; The PASO programme has been established by the SOHDEV associ- • Toothbrushing ation (Oral health, Handicap, Dependence and Vulnerability), the calendar; SHBH-RA Network (Oral-dental Health & Handicap Rhône-Alpes • Soundtracks; Region), the dental department at the Vinatier hospital centre and • Educational films. CRA-RA (Autism Resource Centre Rhône-Alpes Region).

A full evaluation of the programme will take place during 2013 and 2014.

More information: www.sohdev.org or [email protected]

Page 11 Preparing for the unexpected: Initiatives for people with autism in accidents and emergencies

Accidents, floods, fires and other emergencies are overwhelming for most people, but for people with autism, these situations can be far more difficult. Stress, loud noises, shouting, flashing lights and sirens can send a person into sensory overload. A person with autism could run away out of fear of the unexpected and tense situation they are faced with, leading to much more stress and drama over finding a lost person amidst the chaos.

In an emergency situation, difficulties faced by people with autism such as under- standing information and questions too literally, misinterpreting others’ intentions and becoming confused by complex infor- mation can also have serious consequences.

Nobody feels ready for these kinds of situa- tions, but a little bit of preparation can go a long way. In some European countries, The card can also be useful in a day-to-day Improving medical emergency autism organisations are planning ahead context to help ease communication and understanding challenges, while shopping, and hospital procedures in to assist people with autism and their Italy supporters to cope better with emergen- at social events, using public transport and cies. leisure facilities. A new initiative in Italy aims to improve The introduction of the card is accom- the experiences of people with autism Autism Alert card launched in panied by a campaign titled ‘Scotland’s when being admitted to hospital, including Scotland Emergency Services: Get Autism Alert’, emergency departments. which aims to raise awareness and under- The National Autistic Society in Scotland standing of autism within the police force, The initiative by the Bambino Gesù Hospital has launched an ‘Autism Alert card’ that emergency services, local authorities, is developing recommendations for reason- aims to assist people with autism who are health services and local communities. able accommodation of people with autism, victims of crime and accidents. in line with the United Nations Convention The Autism Alert card is now avail- on the Rights of Persons with Disabilities. The Autism Alert card is carried by able in numerous regions of Scotland. people with autism, and is used to ensure The National Autistic Society is also The recommendations give practical that people with autism can be quickly campaigning for a centralised Autism Alert instructions aimed at clinicians and other identified and supported by police and card system to be introduced throughout health professionals, including: emergency services personnel. the country. • Avoiding excessive sensory stimula- The card includes details of a personal More information: [email protected] tions in waiting and visiting rooms; contact who can lead emergency services • Visual instructions to provide predict- personnel through the best ways to ability of rooms and procedures; support the individual with autism through • Allowing parents or assistants to help these stressful experiences. the person with autism through all procedures; • Assigning a special emergency code “States Parties shall take […] all necessary measures to ensure and badge to make the person with autism known to the staff. This alerts the protection and safety of persons with disabilities in situa- staff to the person’s special needs and tions of risk, including situations of armed conflict, humanita- enables them to be given priority and rian emergencies and the occurrence of natural disasters.” avoid excessive waiting times; • Avoiding any unnecessary routines; - United Nations Convention on the Rights of Persons with Disabilities, Article 11 • Avoiding, whenever possible, the use of sedative medications which are known

Page 12 Autism - Europe Preparing for the unexpected: Initiatives for people with autism in accidents and emergencies

to have paradoxical effects on people Telephone hotline to support with autism, especially in emergency families of people with autism services; Top 3 emergency • And many more. affected by Hurricane Sandy evacuation tips

The initiative is also conducted in the When a hurricane occurs, a person with • Develop clear emergency framework of the Italian National Institute autism can become separated from procedures and conduct of Health’s new national guidelines on the their family, sometimes their home is practice drills for common destroyed and everything that is familiar treatment of autism spectrum disorders emergencies such as fires; in children and adolescents that aim to has suddenly been replaced by chaos and improve services for children and adults disorder. For these reasons and more, • Ensure that people with with autism across Italy. the Autism Society in the United States autism are familiar with the recently provided a telephone hotline to alarms and sirens, and can The initiative is currently underway and the support families of people with autism move as quickly as possible results will be presented in April 2013. who were affected by Hurricane Sandy. to the evacuation point; The Autism Society’s telephone hotline • Develop a relationship with Emergency evacuation also provides information and advice local emergency services training at a residential related to other emergencies. staff and provide them with some training in under- service in Luxembourg More information:

www.autism-society.org standing and working with Foundation Autism Luxembourg regularly people who have autism. conducts emergency evacuation training Image (opposite page): David Silvester, a man with Asperger with people who have autism that live in syndrome, holding an Autism Alert card at the launch event for the organisation’s residential facilities. the card in the Grampian region in Scotland. Image (below): Emergency evacuation training in Luxembourg. The organisation has developed a TEACCH style plan and training materials for people with autism to visualise emergencies and evacuation procedures. For the past three years, the residents have been prepared for emergencies using these materials and taken to the emergency assembly point twice per week to ensure they remember the correct place to go in an emergency.

A full evacuation practice for the whole organisation is also conducted once per year in cooperation with the local fire brigade. During this evacuation, some staff members hide from the fire fighters so that they will also gain practice in finding people with autism who may hide during a real evacuation.

Page 13 Autism in a mainstream secondary school Margot’s journey After many difficult experiences in primary school, a Flemish mother named Inge had to find a strategy for her daughter, Margot, to survive and learn in a mainstream secondary school. Three years later, to every- one’s surprise, Margot is not just surviving – she’s thriving. Inge describes the steps they took to help Margot succeed at school. My daughter Margot is a clever girl who has autism. By the age of Asking the school to make adaptations twelve, she had completed primary school. Or perhaps you could better describe her experience of primary school by saying she for Margot survived it. She endured many difficulties and quite a few admis- sions to the paediatric psychiatry department at the hospital as We found a mainstream school that agreed to do everything neces- well as days where she just stayed at home. It wasn’t easy, but she sary to meet Margot’s needs; the Peter Benoit Secondary School (in made it to the end. Flanders, Belgium). I was sceptical at first, because I had experienced empty promises from other schools that committed to provide So it was time to face her next big challenge: secondary school. assistance to Margot in the past but never actually did. And many As secondary school is far more complex than primary school, people had told me it is pointless to waste your energy trying to everyone including Margot thought it would present too many obtain educational assistance for your child when autism is not a difficulties for her. It seemed clear that special education would be visible disability. the only option. However, we couldn’t enrol her in a special school because the school didn’t have enough places. What could we do? I feared that the school would not cooperate if I gave them too much I knew Margot would do her best in whatever situation she faced, information or had too many requirements. So, I chose not to dwell but I had fears about whether a school would be willing to make on explaining autism and instead focused on practical solutions the necessary adaptations for Margot’s needs or what to expect to the problems Margot faces. I created a short list of adaptations from the staff. Margot looks like an ordinary girl; on the outside that we needed the school to make for Margot. I gave the list to the she is always smiling, lively, confident and she never struggles for school’s director, admitting that the requested adaptations were not words. Her fight for survival is invisible because it’s on the inside. easy to carry out, however, they were all essential for Margot.

Some examples of the requests include:

Problem: Margot is hypersensitive to sound; many kinds of noises are tiring and painful for her. She also can’t manage too much communication; when there is too much information or explanation, she disengages and can’t concentrate.

Solution: Margot listens to music on her iPod in the classroom to help her feel calm and focused.

Problem: Given her hypersensitivity to sounds and the difficulties she faces in trying to cope with too much information at one time, Margot does not practice any sport and cannot stay in the sports room.

Solution: Let her draw or read in a separate room.

Problem: Dealing with unforeseen changes is exhausting for Margot.

Solution: Announce and explain all excursions, emergency evacuation training sessions, and teacher replacements in advance.

Page 14 Autism - Europe Image (above): Margot’s drawing.

Image (opposite): Margot is allowed to listen to her iPod in class to help her concentrate on specific tasks.

Problem: Margot only interacts with people who act in predictable Asking the other students to ways (for example, when she is accustomed to the way they talk, their behaviours and their reactions). understand Margot

Solution: Allow three months before expecting Margot to ask In return, the school had just one requirement: that Margot’s class- questions to the teachers, school director or administrators. mates should be informed about Margot’s condition. I was not confident about the idea of simply explaining autism to her class. Problem: Homework. Margot doesn’t associate doing schoolwork So I sat down with Margot and asked her what her classmates with the home environment. She also doesn’t find it useful to were saying about her and what she wanted them to know about repeat something she already learned at school. As parents, it’s her. I prepared an explanation based on what Margot had told me. difficult for us to change this, because in Margot’s mind we don’t Margot wanted to be present when I addressed her class, but she have the relevant expertise or control over anything that happens didn’t want to say anything. at school. When I spoke to Margot’s class, it turned out that Margot’s class- Solution: Provide step-by-step instructions in Margot’s diary mates already had some opinions about Margot: they saw her explaining what she is expected to do, how to do it and how long as the student who sucked up to the teacher, wanted to act like it should take. the boss and was allowed do whatever she wanted. I allowed the students to present their criticisms and then I addressed each of General instruction: Margot interacts best with people who them with an explanation. Many students were jealous that she can communicate what they expect from her in a short, clear was allowed to listen to her iPod in class whenever she wanted. and friendly manner (straight to the point, with no small talk). I explained to them that listening to her iPod was part of the Margot also needs to receive clear feedback about whether she is whole system Margot developed to be able to cope with being performing well or not. in the class environment; she would always listen to one specific song when she listened to the teacher’s explanations; another Together we agreed on one objective for Margot: she should feel song when she had to take a test, and she even had a song for her safe and at ease and have trust in her school. exams. Her classmates were amazed when they heard she always listened to the same songs and thought that sounded boring. But Given Margot’s experiences at primary school, our main concern they did gain an understanding of how this helped Margot through was just to keep Margot engaged in school, so the school’s director her difficulties in class. Her classmates were also intrigued about gave Margot some instructions too: “Do not do anything, do not how a person can be so hypersensitive to any kind of stimuli. I study. Be present”. Those two little sentences relieved Margot of acknowledged that her overreaction might seem bizarre to others. her stress and allowed her to begin attending secondary school on a regular basis. The students were given the opportunity to ask questions and or share their reactions. As Margot didn’t want to be overwhelmed The director and teachers made the adaptations we requested and by questions, the students wrote their questions and reactions on Margot’s first year at secondary school was a success. So I had to paper. admit, the school did keep its promises!

Page 15 Some of the students’ reactions included: Dealing with new challenges

“Oh my God, this must be so difficult!” I told the school staff that I knew incidents and misunderstandings “I would really be tired.” related to Margot’s autism would happen regularly and that no one “You can’t see it, she looks normal.” would be blamed for it. What really mattered was the fact that both “For me she will always be Margot.” myself and the school staff were willing to face the problems and “Now I understand why she can do things that we can’t at school. resolve them. And that’s ok.” To deal with the ongoing challenges for Margot, I maintain regular That one-hour talk with Margot’s class really made a difference contact with the school’s director. I inform the director when to the way that the other students saw Margot. For the first time Margot encounters difficulties at school, based on what Margot in her life Margot experienced the feeling of being part of a class- tells me about her experiences and needs, as well as changes I have room and being accepted just the way she is. The other students observed in Margot’s behaviour at home. The director passes the respect her, take care of her and now she has friends who are not information on to the teachers so everyone has some insight into taking advantage of her naivety, and instead accommodating her how Margot is feeling inside. differences. Sometimes they think she is a bit special and even cool. Some of Margot’s requests have included:

• Having one single contact person; • Being able to express emotions without being judged or questioned over her unusual expressions; • Avoiding small talk, focus on the important information only; • Warnings and clarifications from teachers about unfamiliar situations (for example, when there is an excursion, providing pictures of the place and explaining what she can do if she experiences stress during the excursion, or if she must work in a group, an explanation of who else is in the group and her role); • Messages from her and I being passed on to the relevant teachers.

The school has been very responsive to Margot’s ongoing needs; small talk has been minimised and support is available for Margot when she needs explanations and clarifications.

The school staff have even acted spontaneously to make new adaptations for Margot, such as giving her a ‘wild card’ that gives her permission to leave the classroom whenever she feels it is too noisy. On these occasions she goes to the director’s office or the secretariat to read or listen to music.

I really wanted to thank Margot’s class and teachers for accom- modating Margot so well, so I wrote them a letter of thanks which they really appreciated.

“ Member states should provide a legal framework, which ensures the rights of children and young people with disabilities, including people with autism spectrum disorders to receive education – within general schemes wherever possible – that is appropriate to their needs, is non-discriminatory and works towards social inclusion. There is a need to ensure that resources are sufficient for the full implementation of relevant legislation.”

- Council of Europe Recommendation CM/Rec(2009)9 on the education and social inclusion of children and young people with autism spectrum disorders - adapted in cooperation with Autism-Europe.

Page 16 Autism - Europe A simple success story? “In primary school I was Definitely not simple! a house whose doors and windows were barricaded. Margot’s experience at school may seem like a simple success story, but I can assure you No one could ever enter it took a lot of energy and effort. We faced the house and I could not many set backs and we must remain alert to open it. Now I am a house new challenges. And of course none of this would have been possible without the willing- with a door and windows… ness and the open-mindedness of the school with curtains. I can open staff. them and I am willing to Image (above) :The Peter Benoit Secondary School in Flanders, Margot has really blossomed since she started do so. I can decide myself!” Belgium. to attend this school. She has gained insight Image (above, right) : When Margot finds the classroom too into herself and now understands her own noisy, she goes to the school director’s office or the secretariat. strengths and weaknesses perfectly. She used Image (opposite page) : Margot with her school friends. to be angry with herself and the world; she couldn’t make sense of her life. Since she has been given the opportunity to discover who she is and what she would like to be in the future, I can see that my daughter has become a curious and courageous girl who is open to Inge’s tips for other parents the outside world and is leading a meaningful life. Or in Margot’s own words: “In primary school I was a house whose doors and approaching mainstream schools windows were barricaded. No one could ever enter the house and I could not open it. Now I am a house with a door and windows… • Begin by making a list of the difficulties that your with curtains. I can open them and I am willing to do so. I can decide son or daughter is likely to face at school and myself!” what they need in order to overcome these diffi- culties; • Approach the school with solutions for your son or daughter that you need the school to imple- ment; • Maintain a positive approach and tell the school that you understand that there will always be new difficulties for your son or daughter, but you are willing to cooperate with the school to resolve problems; • Be careful not to attack the school staff when things go wrong; • Show the school that you appreciate the efforts they are making to include your son or daughter.

This article intends to provide a personal story that may contain useful information to our readers on approaches to supporting people with autism in a mainstream school environment. The article does not reflect any particular policy position of Autism-Europe with regard to whether people with autism should attend mainstream or specialised schools.

Page 17 Congress Autism-Europe 10th Internatio nal Congress Keynote speakers The following distinguished keynote speakers have been confirmed for Autism-Europe’s 10th International Congress.

Dr Fred R. Volkmar Prof. Tony Charman Prof. Rita Jordan Prof. Francesca (United States) (United Kingdomi) (United Kingdomi) Happé (United Dr Volkmar is the Professor Charman Rita Jordan is Kingdom) Irving B. Harris holds the Chair Emeritus Professor Francesca Happé Professor of Child Psychiatry, in Autism Education at the in Autism Studies at the is Professor of Cognitive Pediatrics and Psychology, and Institute of Education, London, University of Birmingham. She Neuroscience and Director of Director of the Yale University and practices as a chartered has established and run a range the MRC Social, Genetic and Child Study Center in the United clinical psychologist, working of professional development Developmental Psychiatry Centre States. He is also the Chief of Child with children who have autism. programmes in autism studies, at the Institute of Psychiatry, Psychiatry at Yale-New Haven He has published more than 150 and published research on many Kings College London. Her work Hospital. Dr Volkmar was the peer-reviewed papers and more aspects of autism. She has served has explored the nature of social primary author of the American than 25 book chapters. He has on national and international understanding in typical develop- Psychiatric Association’s DSM-IV served on a number of expert autism committees as well as ment and ‘mind-reading’ difficul- section on autism and pervasive panels related to autism for the being a consultant to the Expert ties in autism, abilities and assets developmental disorders, as well United Kingdom and the United Committee on Autism for the of people with autism, and their as being the author of hundreds States governments, and he Council of Europe. She is also relation to detail-focused cogni- of scientific papers and chapters, works closely with autism organi- the former Deputy Principal of a tive style. From 2013 she will be and several books, on the topic sations in the UK to advocate for school for children with autism. the President of the International of autism. the rights of people who have Society for Autism Research. autism. Prof. György Prof. Nancy Gergely Dr Krisztina Minshew Dr Katarzyna (Hungary) Stefanik (United States) Charwarska Professor Gergely (Hungary) Professor Minshew is (United States) is Co-Director of the Cognitive Dr Stefanik is a a child neurologist and Director Katarzyna Charwa- Development Center at the psychologist who has over 20 of the Center for Excellence in rska is Associate Professor in the Central European University. years of clinical experience as a Autism Research at the University Child Study Center, and Director His research, for which he has specialist in the field of autism. of Pittsburgh. Her research has of the Toddler Developmental been awarded numerous prizes, She is the Vice Dean for Scientific made many contributions to the Disabilities Clinic, at Yale includes extensive work on and International Affairs and delineation of cognitive and brain University. Her research focuses social cognitive development in Research Leader in Education mechanisms responsible for the on the early phenotypic expres- children. for People with Autism at the behavioral manifestations of sion of autism and gaze and Bárczi Gusztáv Faculty of Special autism. Professor Minshew has face processing abnormalities Dr Miklós Győri Education at the Eötvös Loránd also worked with many govern- observed in infants and toddlers (Hungary) University in Budapest. She has ment and parent organisations to with autism. Dr Győri is Associate also served on national boards translate research advances into Professor and Head and committees related to policy and services. Theo Peeters of the Institute for the Psychology autism. (Belgium) of Special Needs at the Eötvös Prof. Sven Bölte Theo Peeters found- Loránd University in Budapest. (Sweden) ed the Opleidings- His research focuses on atypical More information Professor Bölte is centrum Autisme (Centre for cognition, language and commu- www.autismcongress2013.eu the Director of the Training in Autism) in Antwerp nication, including among people Center of Neurodevelopmental and provided some of the first with autism. Disorders at Karolinska Institutet. training courses on autism in His research has focused on the Belgium. He is TEACCH-affiliated Ros Blackburn epidemiology, causes, assessment and has published many books (United Kingdom) and treatment of autism spectrum on autism, with his main focus Ros Blackburn has disorders. He also has many years being on ethical issues in autism, autism and gives of experience as a clinical psycholo- such as the understanding of public lectures internationally to gist and has published extensively autism from within and parent- increase awareness and under- in the field of autism. professional collaboration. standing of people who have Register now for early autism. bird prices! Benefit from a discount on congress registration between 1 February and 31 May, 2013.

Page 18 Autism - Europe Autism-Europe 10th Internatio nal Congress Latest news about the Congress Discount congress airfares from Star Alliance airlines

Congress participants can now benefit from a discount on flights booked with official partner, Star Alliance. To obtain the discount code and find more information on participating airlines, go to: www.autismcongress2013.eu

Grants for people in need of financial support

People in need of financial support can now apply for grants to th attend the Autism-Europe International Congress courtesy of the 6 International Art Exhibition of People with JiM Foundation. Autism calls for artworks

There will be 15 grants available to support parents of people with The Autism-Europe International Congress will again host exhibi- autism and 15 grants available to support professionals. The grants tions of artworks by people with autism in 2013. will cover the cost of the congress registration. The first art exhibition will be a digital exhibition, titled ‘Autismo y Applications are now open and successful grant recipients will be su huella / Autism and its footprint’, organised by Autismo Burgos. notified in mid-May and mid-August. Prizes will be awarded to some artworks according to a public vote which will be conducted online prior to the congress. Photographs More information and application forms are of artworks should be submitted to Autismo Burgos by April 30, available at: 2013. www.autismcongress2013.eu The second exhibition, titled ‘’ will feature artworks The JiM Foundation is a Polish founda- specifically by Hungarian people with autism, and will be organ- tion that supports people with disabilities ised by Mosoly Otthon Foundation. through a range of activities. More information about art exhibitions: More information: www.jim.org www.autismcongress2013.eu

Invitation to Autism-Europe’s 2013 Annual General Assembly Donostia - San Sebastián Image : Sarej - blog.pobiedzinski.com

In accordance with the statutes of our organisation, we are services will also take place on Friday May 3, and an Autism-Europe pleased to invite you to attend the Autism-Europe Annual Council of Administration meeting will be held on Saturday May 4 General Assembly, which will take place in Donostia - San and Sunday May 5 (in the morning). Sebastián, Spain on the afternoon of Saturday May 4, 2013. The date and location of this year’s Annual General Assembly Agenda : have been chosen to coincide also with the International Meeting • Presentation of the executive committee report; for Autism Research (IMFAR) which will be held in Donostia - San • Presentation of the activity report: 2012; Sebastián , on May 2 to 4, 2013. • Presentation of the financial report: 2012; All the working documents related to these meetings will be • Presentation of the work programme 2013. emailed to the registered participants at a later date.

For more information, please contact Autism-Europe secretariat: In conjunction with this meeting, a study visit to Gautena autism [email protected]

Page 19 News in brief

Hungary receives 2.6 million euro Adults finally able to receive grant for autism support autism diagnosis in Ukraine

In Hungary, a large grant has been awarded for a two-year Adults with autism in the Ukraine are now able to receive a project to improve the quality and accessibility of autism diagnosis following a decision by the country’s Ministry of services throughout the country. Health.

The project aims to address numerous existing problems in Previously, the Ukrainian Government had failed to acknowl- the autism sector and establish a nation-wide care system edge the existence of autism in adults and the normal practice of high quality accessible services from diagnosis through to for diagnosing people over the age of 18 who display symptoms employment and old age services. To this end, it will establish of autism was to diagnose them with schizophrenia. a National Provider Network, Professional Consulting Network and Coordination Center for people with autism. The decision to overturn this inappropriate practice comes as a result of much advocacy work by Ukrainian organisation, Child The grant was awarded to the Hungarian Ministry of Social Affairs with future, with the support of Autism-Europe. and the project will be coordinated by Equal Opportunities of Persons with Disabilities non-profit Ltd. The grant has been The decision is accompanied by provisions for improved regula- provided by The European Social Fund and Hungary’s Social tion and monitoring of diagnostic practices, as well as awareness Renewal Operational Program under the New Széchenyi Plan raising and early detection initiatives. In 2013, Ukraine’s Ministry (National Development Program), following much advocacy of Health has also allocated its first ever budget for diagnosis work by parents of people who have autism via the Hungarian and treatment of autism, set at 10 million Ukrainian hyrvnias Autistic Society. (90,000 euros).

More information : http://fszk.hu/english-introduction/ More information: www.cwf.com.ua/en [email protected]

New sexual and cultural education Autism-Europe participates in projects for people with learning third European Parliament for disabilities People with Disabilities (EPPD) Autism-Europe is participating in two new European projects; the ‘SEAD’ project (Sexual Education for Adults with At this event, around 500 delegates from organisations around Disabilities, their parents and staff) and the ‘Count Me In’ Europe that represent people with disabilities met with MEPs project. and EU decision-makers in order to discuss how Europe can protect the rights of persons with disabilities during this time The SEAD project will develop new and creative ways to effec- of financial crisis. tively educate people with learning disabilities about sexual Autism-Europe was represented by several of its members who health and relationships, notably through art. The project will took the floor to voice the concerns of people with autism and utilise research from European reports and comparative studies their families. For example, Pietro, a self-advocate from Italy, to compile good practices in the field and produce adapted called for the full inclusion of people with autism and for their communication tools. potential to be utilised. The project is funded by the European Union’s Grundtvig The event was held on December 5, 2012, in conjunction with the programme. UN International Day of Persons with Disabilities which is held each year on December 3. More information: www.sead-project.eu

Count Me In vocational education and training project will create tools for relevant educators to include people with learning disabilities in cultural activities. As part of this project, the GAIA Museum in Denmark along with several other existing programmes will provide models for how to include people with learning disabilities in cultural activities with the aim to improve their social inclusion and opportunities in the labour market.

The project is funded by the European Union’s Leonardo da Vinci Image : At the European Parliament for People with Disabilities event in December 2012. (transfer of innovation) programme.

More information: [email protected]

In this section, short news items are chosen for printing based on their relevance at the time of production. Other updates are also printed in our regular electronic newsletter (you can register to receive this free of charge on the Autism-Europe website: www. autismeurope.org)

Page 20 Autism - Europe New Members

Letting Latvians know about autism

Since the Latvian Autism Association (‘Latvijas Autisma apvienība’ in Latvian) began in 2006, some things have really started to change for people with autism and their families in Latvia.

In a country where autism was largely unheard of and usually misdiagnosed, the association began its work by distributing information about autism, including the prevalence rate of autism and information about therapies that can be used to assist people with autism to develop their skills in a range of areas.

This involved establishing a database of specialists in the field of autism who are working in Latvia. The database is now quite comprehensive and contains much information for parents including contact details for professionals (psychiatrists, psychotherapists, speech therapists and teachers who have been trained in education of children with special needs) who can provide diagnoses and therapies, as well as schools that can accommodate students who have autism.

In 2012, the Latvian Autism Center was established. The centre, which has just begun as a small initiative in Riga, aims to become a larger centre of specialists providing diagnosis, psychologist consultations, various therapies and other forms of support for people with autism and their families. Image : A workshop at the Latvian Autism Centre (LAA), led by British psychologist, Dennis Bury (right), with LAA President, Andzela Stein- Currently, the association is working on a capacity-building project funded by the berga (left). European Union, to conduct research, publish an online magazine called ‘Gliemezitis’, undertake media training, and produce information brochures and teaching aids such as books and games. The Latvian Autism Association The Latvian Autism Association is also working continuously to improve the registra- aims to: tion system for people with autism spectrum disorders in Latvia (there are currently • Advocate for, and protect, the rights 178 people with autism now registered, from among Latvia’s population of 2.2 million of people with autism; people). • Provide advocacy resources for Despite their accomplishments, there are still some major challenges in Latvia. For people with autism; example, there is still no official recognition of autism by the national government • Improve public awareness of autism; and government funding is still not provided for autism support services. The Latvian • Develop and strengthen national Autism Association continues to work hard to overcome these problems. and international relations to The Latvian Autism Association has been growing steadily over the past six years and protect the rights of people with now has 96 members and cooperation partners. The association aims to continue autism; working with like-minded organisations and responsable institutions in Latvia to do • Facilitate the establishment of an even more for people with autism and their families in Latvia. early and appropriate diagnostic system for autism; More information: www.autisms.lv/ • Provide support for choosing and implementing early and appropriate therapies; • Provide early intervention and professional support for children and their families; • Contribute to the education of specialists in the field of autism.

Illustration : A map of Latvia, colou- red in by Janis Vanaga, a Latvian boy with autism.

Page 21 Member Associations

FRANCE LUXEMBOURG APNA-ESPANA FULL A.F.A.A.- PRO AID AUTISME FONDATION AUTISME LUXEMBOURG C/Navaleno, 9 MEMBERS 19, Rue de Martyrs 68, route d’Arlon E - 28033 Madrid (national associations of people F - 75009 Paris L-8310 Capellen Tel: +34.91.766.22.22 with autism and parents) Tel : + 33.1.45.41.52.93 Tel: +352-26 91 11 1 Fax: +34.91.767.00.38 Fax: + 33.1.45.41.52.93 Fax:+352-26 91 09 57 E-mail: [email protected] ARMENIA E-mail: [email protected] Email: [email protected] Website: www.apna.es AUTISM OVERCOMING Website : www.proaidautisme.org Site Internet : www.fal.lu Yerevan, Armenia AUTISMO BURGOS 9 Arshakuniats St., AUTISME FRANCE APPAAL C/ Valdenunez, 8 Tel: +374 91 41 59 83 1175 Avenue de la République Mme Leisen-Glesener E - 09001 Burgos +374 91 73 90 12 06 550 La Roquette sur Siagne 16 Grand Rue Tel: + 34.947.46.12.43 E-mail: [email protected]; Tel: + 33.4.93.46.01.77 L-9905 Trois Vierges Fax: + 34.947.46.12.45 [email protected] Fax: + 33.4.93.46.01.14 Tel: +352-621-637.975 E-mail: [email protected] E-mail: [email protected] E-mail: sylvie.leisen-glesener@ Website: www.autismoburgos.org AUSTRIA Website: www.autismefrance.org ec.europa.eu RAINMAN’S HOME Website: http://www.appaal.lu AUTISMO-ESPANA Semeperstrasse 20/2 - 6 SESAME AUTISME C/ Eloy Gonzalo 34 1° 1180 Wien 53, rue Clisson THE NETHERLANDS E - 28010 Madrid Tel: +43 1 478 64 34 Fax: +43 478 91 95 F - 75013 PARIS N.V.A. Tel: + 34.91.591.34.09 E-mail: [email protected] Tel: + 33.1.44.24.50.00 Weltevreden 4c Fax: + 34.91.594.18.31 Website : http://rainman.at/ Fax: + 33.1.536.12.563 NL 3731 AL De Bilt E-mail: confederacion@autismo. E-mail: [email protected] Tel: + 31.30.229.98.00 org.es BELGIUM Website: www.sesame-autisme.com Fax: + 31.30.266.23.00 Website: www.autismo.org.es A.P.E.P.A. E-mail: [email protected] Rue de l’Aurore 98 GERMANY Website: www.autisme.nl F.E.S.P.A.U. B-5100 Jambes AUTISMUS DEUTSCHLAND C/Navaleno, 9 Tel: + 32-81-74.43.50 Rothenbaumchaussee 15 NORWAY E - 28033 Madrid Fax: + 32-81-74.43.50 D - 20148 Hambourg A.I.N. Tel: + 34.91.766.22.22/72.65 E-mail: [email protected] Tel: + 49.40.511.56.04 Postboks 6726 Etterstad Fax: + 34.91.767.00.38 Website: www.ulg.ac.be/apepa Fax: + 49.40.511.08.13 N - 0609 Oslo E-mail : [email protected] E-mail: [email protected] Tel: + 47- 23 05 45 70 Website : www.fespau.es V.V.A. Website: www.autismus.de Fax : + 47- 23 05 45 61/51 Groot Begijnhof 14 E-mail: [email protected] FUNDACION MENELA B - 9040 Gent GREECE Website: www.autismeforeningen.no c/o M. Jimenez Casas Avda Marqués Tel: + 32.78.152.252 G.S.P.A.P. (Greek Society for the de Alcedo, 19 Fax: + 32.9.218.83.83 Protection of Autistic People) PORTUGAL E - 36203 VIGO - PONTEVEDRA E-mail: [email protected] 2, Athenas Street FEDERACAO PORTUGUESA DE AUTISMO Tel: + 34.986.42.34.33 Website: www.autismevlaanderen.be GR-10551 Athens Rua José Luis Garcia Rodrigues Fax: + 34.986.48.34.06 Tel: +30.210.321.6550 Bairro Alto da Ajuda E-mail: [email protected] CZECH REPUBLIC Fax:+30.210.321.6549 P-1300-565 Lisboa Website: www.menela.org APLA E-mail: [email protected] Tel: + 351.21.361.6250 Čechy Asociace pomáhající lidem s Website: www.autismgreece.gr Fax: + 351.21.361.6259 GAUTENA autismem, o.s. E-mail: federacao@appda-lisboa. P.O. Box 1000 Dolanská 23, 161 00 Praha 6 - Liboc HUNGARY org.pt E - 20080 San Sebastian Tel.: +420 606 729 672 HUNGARIAN AUTISTIC SOCIETY Website: www.appda-lisboa.org.pt/ Tel: + 34.943.21.53.44 E-mail: [email protected] (HAS) federacao Fax: + 34.943.21.52.39 Website: http://www.praha.apla.cz/ Fejér György u. 10. I./23. E-mail: [email protected] www.autismus.cz 1053 Budapest ROMANIA Website: www.gautena.org Tel: +36 1 301 9067/354 1073 AUTISM ROMANIA CROATIA Fax: +36 1 302 1094 O.P. 22 C.P. 225 SWEDEN CROATIAN SOCIETY FOR AUTISM Email: [email protected] or info@ BUCAREST AUTISM- OCH ASPERGERFÖRBUNDET (S.H.P.A.C.) esoember.hu E-mail: [email protected], Bellmansgatan 30 Dvorniciceva 6 Website: www.esoember.hu ; www. [email protected] S- 118 47 Stockholm 10000 Zagreb autista.info.hu ; www.aosz.hu Website: http://autismromania.ro/ Tel: +46 8 702 05 80 Tél : + 385.51.551.344 Fax: + 46.86.44.02.88 Fax : + 385.51.551.355 ICELAND FEDRA E-mail: [email protected] E-mail : [email protected] UMSJONARFELAG EINHVERFRA 22 Decembrie street no. 23 Website: www.autism.se Site internet : www.autizam-uzah.hr Haaleitisbraut 11-13 Maramures - Baia Mare IS - 108 Reykjavik E-mail: [email protected] SWITZERLAND CYPRUS Tel: +354 562 1590 AUTISME SUISSE C.A.A.P. E-mail: [email protected] SERBIA Bernstrasse 176 P.O. Box 56149 Website: www.einhverfa.is SERBIAN SOCIETY OF AUTISM CH – 3052 Zollikofen 3304 Limassol Gundulicev venac Street, 40 Tel: + 41.31 911 91 09 Tel: + 357.25.343.461/2 IRELAND 11 000 Belgrade, Serbia E-mail: [email protected] Fax: + 357.25.343.446 I.S.A. Tel/Fax: +381 11 3391-051 Website: www.autismesuisse.ch E-mail: autisticassociation@cytanet. 16/17 Lower. O’Connell Street E-mail: [email protected] com.cy IRL - 1 DUBLIN Website : www.autizam.org.rs TURKEY Website http://www.autismsociety. Tel: + 353.1.874.46.84 TODEV org.cy Fax: + 353.1.874.42.24 SLOVAKIA Ressam Salih Ermez cad. Molla sk. E-mail: [email protected] S.P.O.S.A. No:6 DENMARK Website: www.autism.ie Namestie 1.maja 1. 81060 Göztepe / Kadiköy Istanbul LANDSFORENINGEN AUTISME POBOX 89 Tel: + 90.216.565.45.35 Herlev Hovedgade 199 ITALY 810 00 SK- Bratislava 1 Fax: + 90.216.565.45.46 2760 Herlev AUTISMO ITALIA Phone + 421 915 703 708 E-mail: [email protected] Denmark Via Pinaroli 3 E-mail: [email protected] Website: www.todev.org T: 0045 70 25 30 65 20135 Milano Website: www.sposa.sk F: 0045 70 25 30 70 Tel: + 39. 02 54.10.74.99 UNITED KINGDOM E: [email protected] Fax: +39 02 54104154 Fax: (+39) 02 700 SLOVENIA N.A.S. W: www.autismeforening.dk 537 540 CENTER DRUSTVO ZA AVTIZEM 393 City Road E-mail: [email protected] Lavriceva 5 London EC1V 1NG FINLAND Website: www.autismoitalia.org SL-2000 Maribor Tel: + 44.20.7833.2299 F.A.A.A.S. Tel : +386 31 470 187 Fax: + 44.20.7833.9666 Kaupintie 16 B A.N.G.S.A. E-mail : [email protected] E-mail: [email protected] FI - 00440 Helsinki Via Casal Bruciato 13 Website : www.avtizem.org Website: www.nas.org.uk Tel: + 358.9.77.42.770 I - 00159 ROMA Fax: + 358.9.77.42.77.10 Tel : + 39.06.43.58.76.66 SPAIN SCOTTISH AUTISM E-mail: etunimi.sukunimi@autismi- Fax: + 39.081.807.13.68 A.P.N.A.B.I. Hilton House, Alloa Business Park liitto.fi E-mail: [email protected] C/.Antonio Guezala, lonjas 1 y 2 Whins Road Website: www.autismiliitto.fi Website: www.angsaonlus.org E - 48015 Bilbao Alloa FK10 3SA - SCOTLAND Tel: + 34.94.475.57.04 Tel: + 44.1.259.72.00.44 Fax: + 34.94.476.29.92 Fax: + 44.1.259.72.00.51 E-mail : [email protected] E-mail: [email protected] http://www.apnabi.org/ Website: www.autism-in-scotland.org.uk

Page 22 Autism - Europe HAMPSHIRE AUTISTIC SOCIETY PORTUGAL AFFILIATED A.P.P.D.A.-Lisboa 1634 Parkway, Solent Business Park, MEMBERS Rua José Luis Garcia Rodrigues Whiteley, Fareham (regional associations of people Bairro Alto da Ajuda Hampshire PO15 7AH with autism and parents) P - 1300-565 Lisboa Tel: +44.1489.880.881 Tel: + 351.21.361.6250 Fax: + 44.1489.880.890 MACEDONIA CROATIA Fax: + 351.21.361.6259 E-mail: [email protected] MACEDONIAN SCIENTIFIC SOCIETY A.C.A.P. E-mail: [email protected] Website: www.has.org.uk FOR AUTISM (MSSA) c/o Mrs Lidija Penko Website: www.appda-lisboa.org.pt Institute of Special Education and Senjskih uskoka 1 AUTISM N.I. (PAPA) Rehabilitation, 51000 Rijeka SPAIN Donard, Knockbracken Healthcare Faculty of Philosophy Bull. Krste Tel: + 385.51.551.344 AUTISMO GALICIA Park, Saintfield Road Misirkov b.b. Fax: + 385.51.551.355 Rua Home Santo de Bonaval no 74-bajo Belfast BT8 8BH 1000 Skopje E-mail: [email protected] E - 15703 Santiago de Compostela Tel: + 44.28.9040.1729 Republic of Macedonia Website : www.autizam-ri.hr Tel: + 34.981.589.365 Fax: + 44.28.9040.3467 Tel. +389-2-3116-520 (Ext.234) Fa : + 34.981.589.344 E-mail: [email protected] Fax: +389-2-3118-143 ESTONIA E-mail: [email protected] Website: www.autismni.org [email protected] ESTONIAN AUTISM SOCIETY (E.A.S.) Website: www.autismogalicia.org Rahu 8 AUTISM WEST MIDLANDS MALTA EST - Tartu 50112 APNA-GRANADA Ground Floor, Regent Court INSPIRE (The Eden & Razzett Founda- Tél: + 372.557.9980 Paseo de Ronda, 96-2 , C George Road tion) E-mail: [email protected] E - 18004 Granada Edgbaston, Birmingham Bulebel Tel: + 34.95.826.17.90 UK - B15 1NU Zejtun FRANCE Fax: + 34.95.825.02.04 Tel: + 44 121 450 7582 ZTN 3000 ABRI MONTAGNARD Fax: + 44 121 450 7581 Malta F - 64490 Osse-en-Aspe FUNDACIO CONGOST AUTISME Website: www.autismwestmidlands. Tel: +356 21807708 Tel: + 33.5.59.34.70.51 Ronda del Carril 75 org.uk Website: www.inspire.org.mt Fax: + 33.5.59.34.53.21 08530 - La Garriga - Barcelona - Spain E-mail: info@autismwestmidlands. E-mail: [email protected] Tel: +34-93-871.47.57 org.uk MOROCCO Website : http://fratrieabri.free.fr/ Fax: +34-93-871.48.02 A.P.A.E.I. E-mail: [email protected] ASSOCIATE Rue 9 Avril - Maârif AUTISME EVEIL Website: www.autisme.com Casablanca 179, Rue des Narcisses MEMBERS Tel: + 212.(0)5 22.25.81.43 F - 74330 Epagny NUEVO HORIZONTE Fax: + 212.(0)5 22.25.57.11 Tel: +33.4.50.51.11.50 Avda de la Communidad de Madrid, s/n CZECH REPUBLIC E-mail: [email protected] Fax: +33.4.50.68.18.99 E - 28230 Las Rozas de Madrid AUTISTIK CLUB E-mail: [email protected] Tel : + 34.91.637.74.55 c/o Miroslava Jelinkova POLAND Website: www.autisme74.com Fax : + 34.91.637.77.62 Kyselova 1189/24 N.S.A. E-mail: [email protected] 182 00 Prague 8 ul. Montwilla 2 AUTISME POITOU-CHARENTES Website: www.nuevohorizonte.es Tel: + 420 605 400 865 71-601 Szczecin Monsieur Jean Marie Baudoin E-mail: [email protected] E-Mail: [email protected] 23, rue Noir FUNDACION “MAS CASADEVALL” Website: http://www.volny.cz/autistik/ 79000 Niort (FMCA) FUNDACJA WSPÓLNOTA NADZIEI Tel: + 33.549.24.14.87 Apartat de Correus 172 FRANCE (Community of Hope Foundation) E-mail: [email protected]. E-17820 Banyoles (El Pla de l’Estany- E.D.I. FORMATION Więckowice, ul. Ogrodowa 17 Girona) 21, Avenue Cévoule 32-082 Bolechowice DIALOGUE AUTISME Tel: +34.972.57.33.13 F- 06220 Golfe Juan Tel: +48.12.378.43.58 Fax: BP 248 Fax: +34.972.58.17.12 Tel: + 33 4 93 45 53 18 +48.12.378.43.59 45162 Olivet Cedex E-mail: casadevall@mascasadevall. Fax: + 33 4 93 69 90 47 Email: [email protected] Tel: +33 02 38 66 34 75 com E-mail: [email protected] Web Site: www.farma.org.pl Fax: +33 02 38 66 34 75 Website: http://www.mascasadevall. Website: www.autisme-formation.net E-mail: dialogue-autisme@voilà.fr net/fundation/about-us SYNAPSIS FOUNDATION U.N.A.P.E.I. Ul. Ondraszka 3 HUNGARY SWITZERLAND 15, Rue Coysevox 02-085 Warsawa MÁS FOGYATÉKOS GYERMEKEKÉRT AUTISME SUISSE ROMANDE F - 75876 Paris Cedex 18 Tel/fax: +48.22.825.77.57 ALAPÍTVANY av. de la Chablière 4 Tel: + 33.1.44.85.50.50 E-mail: [email protected] Móri út 16 CH - 1004 Lausanne Fax: + 33.1.44.85.50.60 Website: www.synapsis.waw.pl H-8000 Székesfehér vár Tél. +41 21 646 56 15 E-mail: [email protected] E-mail: [email protected] E-mail: [email protected] Website: www.unapei.org UKRAINE Website: www.autizmus.org Website : www.autisme.ch AUTISM SOCIETY OF UKRAINE HUNGARY 30, New Mill Road, Thougsbridge (near ITALY UNITED KINGDOM A.F.R.G. Holmfirth) FONDAZIONE CLARA FABIETTI AUTISM INITIATIVES Delejutca 24-26, Mailbox:1480 UK - WEST YORKSHIRE HD7 2SH via Spartaco, 30 7, Chesterfield Road, Merseyside H - 1089 Budapest Tel: + 44.1.484.681.471 I - 20135 MILANO Tel: + 36.1.210.43.64 E-mail:[email protected] Tel: + 39 02 5412 7248 Liverpool L23 9XL Fax: + 36.1.314.28.59 E-mail: [email protected] Tel: + 44.1.51.330.95.00 E-mail: [email protected] CHILD WITH FUTURE Fax: + 44.1.51.330.95.01 21/16, Skovorody Str. ANGSA-LOMBARDIA onlus E-mail: [email protected] ITALY Kyiv 04070 Via B. Rucellai 36 Website: www.autisminitiatives.org A.P.A.M.A. Ukraine I - 20126 Milano MI c/o P.A.M.A.P.I. Scuola ‘Amerigo Tel: +38 (044) 585 36 08 Tel: + 39-02-67.49.30.33 SPECTRUM Vespucci’ E-mail: [email protected] Fax: + 39-178-2282858 Sterling Court, Truro Hill, Penryn, Via Bolognese, 238 Website: www.cwf.com.ua E-mail: [email protected] Falmouth I - 50139 Firenze Site internet: www.angsalombardia.it UK - TR10 8AR Cornwall Tel: + 39.05.54.00.594 UNITED-KINGDOM Tél: + 44.1.326.371.000 Fax: + 39.05.54.00.594 AUTISM CYMRU FONDAZIONE OLTRE IL LABIRINTO Fax: + 44.1.326.371.099 62 Newport Road ONLUS E-mail: [email protected] A.P.R.I. CF 24 0DF Mario PAGANESSI Site Internet: www.spectrumasd.org C/o ANFFAS Via Rasi, 14 Wales Via Botteniga, 8 I - 40127 Bologna Tel: +44 (0) 2920 463 263 31100 Treviso Tel: + 39.051.24.45.95 E-mail: [email protected] Tel/Fax: +39-345-5510560 Century House – Riverside Office Fax: +39.05.124.95.72 Website: www.autismconnect.org.uk; W: www.oltrelabirinto.it Center E-mail: [email protected] www.autismcymru.org North Station Road, Colchester LUXEMBOURG C01 1RE Essex KUWAIT APPAAL Tel: +44 (0) 12 06 577678 KUWAIT CENTRE FOR AUTISM Mme Leisen-Glesener Fax: + 44 (0) 1206 578581 P.O. Box 33425 16 Grand Rue E-mail: [email protected] Al-Rawda 73455 L-9905 Trois Vierges Website: www.autism-anglia.org.uk Kuwait Tel: +352-621-637.975 E-mail: [email protected] E-mail: sylvie.leisen-glesener@ Website: www.q8autism.com ec.europa.eu Website: http://www.appaal.lu

Page 23 10th International Congress AUTISM-EUROPE

26-28 September, 2013 Budapest, Hungary

New Dimensions for Autism

Important dates Online registration: Early bird 1 February, 2013 - 31 May, 2013 Regular 1 June, 2013 - 31 August, 2013 Late 1 September, 2013 - 15 September, 2013

Notification of presenters: 30 April, 2013

www.autismcongress2013.eu