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The Southeast European Autism Network

A regional initiative on autism and public health Volume 1, Issue 1 January 2014

SEAN News & Activities Year in Review INSIDE THIS ISSUE: Country updates

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Autism Speaks’ World Focus on Autism

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World Autism Awareness Day

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About SEAN

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Highlights  The 3rd annual SEAN meeting was hosted in Bosnia and Herzegovnia in May 2013  The WHO, in partnership with Autism Speaks, hosted the first ever global consultation on autism and developmetnal disabilities.  SEAN countries are working together on a survey to undersand needs of parents affected by autism

In May 2013, SEAN hosted its 3 rd annual Southeast European Autism Network meeting in Sarajevo, Bosnia and Herzegovina. The meeting was cosponsored by UNICEF and Autism Speaks and was attended by National Coordinators of the Network from Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Kosovo, Macedonia, Montenegro, and Slovenia.

The meeting opened with remarks from representatives of the Bosnian Ministries of Health, Education and Social Welfare as well as the UNICEF country office. The first of the two-day event was attended by parents, service providers and researchers. Local and international experts (including Drs. Connie Kasari and Atif Rahman) presented on evidencebased behavioral and

educational interventions for individuals with autism, with a focus on low resource settings. The following day was a closed meeting among National Coordinators of the Network, the SEAN Secretariat, international experts and Autism Speaks, during which discussions related to enhancing regional collaboration took place. Full details are available in the meeting minutes upon request.

World Health Organization Global Consultation on Autism From September 16 thru 18, the World Health Organization (WHO) hosted an Autism Speakssponsored global consultation on autism and developmental disabilities at the WHO headquarters in Geneva, Switzerland. The meeting was attended by autism advocates, national and international policy makers and research experts from over 15 countries. Entela Vakiari and Dr. Liri Berisha attended from SEAN

member-country, Albania. Part of the goal of the conference was to develop specific recommendations for improving access to autism services around the world, with special emphasis on underserved communities and families. Conference attendees formed working groups to develop plans for improving assessment, care, health promotion and research for individuals affected by autism and their families.

For a copy of the Consultation report visit: http://www.who.int/mental_ health/women_children/autis m_report/en/ For a copy of the Draft WHA Resolution on autism and the recently passed MH Action plan, visit: http://www.who.int/ment al_health/en/


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SEAN News & Activities

Country Updates Albania: Awareness activities included the World Autism Awareness Day (WAAD) campaign - Parents in Focus; the Presidential building was lit blue for the 2nd year. The Albanian Children Foundation (ACF) was honored with a special Prize from the President for its contributions to the field; UN Agencies joined ACF President, Dr. Liri Berisha, at a press conference focused on UN Resolution on Autism; local media broadcasted programs about ASD. Service development activities included screening of all two-year old children in primary health care settings in Tirana - developed as part of an Autism Speaks-funded research study; a completed package of assessment and diagnostic instruments was implemented at the ACF Regional Center for Autism. Gold Standard instruments were translated and adapted for use; the Regional Center implemented yearlong distance treatment supervision through telemedicine. Bosnia and Herzegovina: The main activity included the organization of the SEAN meeting in Sarajevo, 29-30 May. Awareness activities included raising public and professional awareness on the importance of early detection, diagnosis and intervention through series of TV shows, one of which was specially focused on ASD; articles in major newspapers about ASD; greater activity of parent organizations working with governmental organizations to lobby for basic rights. Service development activities included laws and bylaws regulating early recognition and intervention, now passed thru parliament; implementation of bylaws regarding education of early interventionists, with separate programs for different levels of education; continued education and supervision of therapists in early intervention; collaboration of outpatient clinic for ASD in primary schools; and initiated a pilot project regarding early recognition of DD thru use of parental questionnaire, with aim of testing 100 children, and as a part of validation that will be completed in 2014. Bulgaria: The Ministry of Health adopted “measures to improve care for people with autism/ASD and their families”, a national plan for autism. In February, Bulgaria joined SEAN and participated in their first Network meeting in May and hosted a representative from Autism Speaks a few months later. In the area of education, a new draft “law on pre-school and school education” has been prepared and is close to adoption. Locally, with the support of the Sofia municipality, another center opened as a major initiative of “Association Autism,” a NGO for autism. Another NGO, the civic group “Help for people with developmental disabilities” published a book entitled “I know a person with autism” in an effort to enhance autism awareness. The NGOs have been very active with WAAD and LIUB activities in 2013. Croatia: For the first time this year the Government building as well as buildings in major cities were lit blue. WAAD activities in Zagreb were attended by Ministers of Social Policy and Youth, Health, and Science, Education and Sports in addition to other government officials, parent groups and individuals on the spectrum. All media in Croatia covered the topic, and TV presenters wore ribbons in support of WAAD. The Croatian Society for Autism was the primary organizer. A Multiagency Government Group for ASD was formed to develop a national plan for autism. A group within the Ministry of Health to develop standards for early detection and diagnosis was formed. In collaboration with UNICEF, the Center for Rehabilitation of Faulty of Education and Rehabilitation Sciences, University of Zagreb, and experts a project to develop standards for early intervention was initiated. Numerous NGOs conducted activities throughout the year including an early intervention project in multiple cities, independent living services in Zagreb, as well as EU-supported projects. Kosovo: The parent association “Autism” hosted an event on April 2nd including a conference in collaboration with the Office for Good Governance- Office of Prime Minister. This event included a round table discussion with experts from Kosovo, Turkey, Macedonia, and Albania on treatment options for autism. Throughout the year, the association engaged in training for teachers and parents, established the Forum for Disabled Persons and offered services. Activities supported by the Professional Association, ANAK, included the release of videos that highlighted the special abilities of children with autism, billboards with paintings from children on the spectrum, leaflets about autism, and a conference at the Department of Psychology with professionals and representatives of Ministries of Health, Social Welfare and Education and the Department of Psychology and Education. Activities organized throughout the year included workshops for parents, teachers, and professionals; an assessment of the needs of autistic children; individualized and needs-based plans with training on how to implement the plans; student training; and advocating for the integration of children with autism in mainstream schools.


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SEAN News & Activities

Country Updates (continued) FYR Macedonia: Macedonian health professional are working very hard on raising even more the awareness for ASD in the country by giving lectures, writing scientific articles for journals, reviews for daily newspapers and appearances in the media during the whole year. The Macedonian Ministry of Social Welfare has open the first day care center for children with ASD in the country where families can place their children under professional care and receive various interventions.

Montenegro: With support of the parents association, there has been on-going training for teachers and parents of children with autism. These include training for personal assistants and developing iindividualized plans based on assessment of autistic children and their individual skills and needs. In October in Budva the Mediterranean Child neurology Congress was held, and participants from more than 20 countries and nearly all continents took part. Participants were overwhelmingly satisfied with the scientific programme, which featured a session devoted to child psychiatry, particularly children with autism spectrum disorders. Especially for the 2nd April, Montenegro supported a media campaign, published articles in the daily newspapers, and aired television programs about the importance of early detection and early treatment, as well as treatment options in the country.

Slovenia: In the field of education, new legislation in term of children with special needs including for the first time children with ASD as a special group has been implemented since September 2013. In health care, a new team has been developed at the Institute of ASD, private, non-profit institution; so there are two teams of health professionals right now in Slovenia - one at the Pediatric Hospital in Ljubljana and one at the Institute of ASD that has been just moved to Maribor; at the Institute of ASD we've been very active to get some financial support from the government for development of health care program for adults with ASD hoping it will be accomplished in 2014. There are two new parent associations, so there are 5 of them now: Society OKO, Society for help for children with ASD "ŠKOLJKE", Society for autism DAN, Centre Society for autism and Society "BODI ZDRAV."

Autism Speaks’ World Focus on Autism Event Autism Speaks Co-founders Suzanne and Bob Wright and Mrs. Ban Soon-taek, spouse of U.N. Secretary-General Ban Ki-moon, hosted the Sixth Annual World Focus on Autism on Thursday, September 26 in New York City. The event promoted autism awareness and highlighted autism as a global public health issue for an audience of First Spouses and dignitaries from countries around the world. Among the speakers who addressed the meeting were First Lady Dragica Nikolić of Serbia; Mrs. Datin Paduka Seri Romah Mansor, Spouse

of the Prime Minister of Malaysia; Her Excellency First Lady Mrs. Margareta Timofti, Wife of the President of the Republic of Moldova; Mrs. Marta Linares Martinelli, First

Lady of Panama; Andy Shih, Autism Speaks senior vice president of scientific affairs. Albania’s Dr. Liri Berisha and Entela Vakiari were also present at the event.


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SEAN News & Activities

World Autism Awareness Day 2014 Global Autism Resolutions World Autism Awareness Day (UNGA/RES,62/139) Addressing the socioeconomic needs of individuals, families and societies affected by autism spectrum disorders (ASD) developmental disorders (DD) and associated disabilities (UNGA/RES/67/82) Comprehensive and coordinated efforts for the management of autism spectrum disorders (WHA, will vote to adopt May 2014)

The world will celebrate the next UN-sanctioned World Autism Awareness Day on April 2, 2014. A resolution marking April 2 as World Autism Awareness Day was passed by the United Nations General Assembly in 2007. The Resolution urges member states to raise autism awareness during the month of April and bring attention to autism as a global issue.

In December 2012, a second UNGA Resolution was passed entitled “Addressing the socioeconomic needs of individuals, families and societies affected by autism spectrum disorders, developmental disorders and associated disabilities.” The purpose of this Resolution is to encourage member states to adopt strategies not only to raise autism awareness, but also to develop programs and

policies to support greater research and services for individuals affected by autism and their families. Autism Speaks signature Awareness Campaign, Light it Up Blue, will officially launch in January 2014 – after which materials that summarize how communities throughout the world can take part in WAAD and LIUB will be available on Autism Speaks website: www.autismspeaks.org/liu b

About SEAN The Southeast European Autism Network (SEAN) was established in Tirana, Albania in 2010 to better the lives of people with autism, other developmental disorders and related mental health conditions in the Southeast European region. In partnership with international agencies, SEAN commits to raising awareness of ASD, improving services, developing reliable public health data, and providing long-term policy solutions.

The SEAN Secretariat is located in Tirana, Albania, and SEAN member countries include Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Kosovo,

Macedonia, Montenegro and Slovenia. For more information about the Network contact Entela Vakiari at entela.vakiari@gmail.com .

SEAN NEWS & ACTIVITIES  

Albanian Children Foundation publishes the first report on Southeast European Autism Network activities 2013, a regional initiative on autis...