The International Conference on Autism and Neurodevelopmental Disorders was hosted by the Ministry of Health of Bhutan, the Ministry of Health & Family Welfare of Bangladesh, and the World Health Organization South-East Asia Regional Office, along with the technical support from Shuchona Foundation and Ability Bhutan Society (ABS), from 18-21 April, 2017, in Thimphu, Bhutan. The overall theme of the conference was “developing effective and sustainable multi-sectorial programs for individuals, families and communities living with ASD and other neurodevelopmental disorders”.
Topics for discussion at the conference broadly were:
- Community based services (incorporating early identification and early intervention in the public health sectors)
- Supportive Inclusive Education Programs
- Employment Opportunities and Training
- Rights & Supported Independent Living in the Community
Types of sessions:
- High-level discourse with global leaders
- Thematic discussions with experts
- Poster exhibition
- Technical presentations
- Interest-group discussions
The objectives of the Conference were:
- Provide a platform for policy-makers to engage with all stakeholders
- Discourse among policy-makers, multi-sectorial experts and direct stakeholders
- Soliciting commitment for the implementation of international resolutions on autism and other neurodevelopmental disorders
- Presenting WHO’s South East Asia Regional Strategy on Autism Spectrum Disorder
- Sharing and learning best practices for national-level development and deployment of programs
- Example: Bangladesh’s National Strategic Plan for Neurodevelopmental Disorders 2016-2021 as a model for low-resource countries
- Promoting cooperation and partnerships for development of effective and sustainable programs
- Advancing the Global Initiative on Autism (GIA)
- Recommending a Collaborative Framework for Addressing ASD in South-East Asia
The delegates and participants were:
- High level international spokespersons
- Health ministers from the South East Asia Region and others
- Persons with autism and their caregivers
- International experts
- Civil society
- Development partners
- Legislators and bureaucrats
For more information on the conference, please see the concept note here.
The International Conference on Autism & Neurodevelopmental Disorders 2017, Thimphu, Bhutan was co-hosted by the Ministry of Health, Royal Government of Bhutan and Ministry of Health & Family Welfare, People’s Republic of Bangladesh, with the technical support of Shuchona Foundation, WHO-SEARO and Ability Bhutan Society.
The inaugural ceremony of the Conference took place on 19th April, 2017 at the Royal Banquet Hall, Thimphu. Her Majesty, the Gyaltsuen graced the inaugural session along with Her Excellency, Sheikh Hasina, Honorable Prime Minister of the People’s Republic of Bangladesh, His Excellency Dasho Tshering Tobgay, Honorable Prime Minister of the Royal Government of Bhutan and Dr. Poonam Khetrapal Singh, Regional Director, WHO-SEARO, who also attended the session along with other distinguished guests and participants.
The three-day Conference was attended by around 350 participants from around the world. The participants consisted of government leaders, policymakers, experts and activists from around the globe, who came together to take forward the discussion on how to develop ‘effective and sustainable multi-sectoral programs for individuals, families and communities living with ASD and other neurodevelopmental disorders’, which was the overall theme of the Conference.
High Level Discussion
The first session of the Conference featured a High-Level Discussion on ‘Enabling countries to successfully address autism and other neurodevelopmental disorders as part of their Sustainable Development Goals’. The session was chaired by Her Excellency, Sheikh Hasina, Honorable Prime Minister of the People’s Republic of Bangladesh and co-chaired by Dr. Poonam Khetrapal Singh, Regional Director, WHO-SEARO. The High-Level discussion was moderated by Saima Hossain, WHO Champion for Autism in South-East Asia and representatives from governments, development organizations and other high-level delegates and experts were invited to partake in this discussion which set the tone for the rest of the Conference.
The Sustainable Development Goals, also known as the Global Goals, represents our common aspirations and way forward. It is important for children and adults with neurodevelopmental disabilities to have a special place in this global momentum and much of the discussion was focused on this topic. H.E Marcia Bernicat, Ambassador, United States of America to Bangladesh, wonderfully summarized the importance of inclusion and the SDGs in her following statement:
“Diversity is a concept we think of in terms such as race, ethnic background or religion, among other attributes. But what if we started seeing every human being along a single continuum of the entire variety our creator used, rather than sorting ourselves in terms of who is “abled” and who is “differently abled?” As people, our skills, talents — all that defines our very humanity — come in so many different combinations. How can we afford to leave anyone behind and still expect to advance as the human race strives to do? This goal of inclusiveness is enshrined in the SDG’s, we must commit ourselves to helping everyone achieve what lies at the foundation of these goals.”
The panel discussions were centered on 5 major themes- Identification, Intervention, Education, Employment and Supporting Independent Living. These themes were presented and discussed during the 3-day International Conference on Autism & Neurodevelopmental Disorders (ANDD2017).
The first panel was focused on early identification of autism and other neurodevelopmental disorders through community-based programs. Split into two sessions, the first focused on Screening vs. Diagnostic Evaluation methods and the second session on Screening and Diagnosis within the health system. Speakers through pre-prepared open-ended questions, discussed matters around research, development of universal diagnostic tools, definition of early identification, and markers for ASD, and challenges faced in screening and assessment. The necessity of a multi-disciplinary team was emphasized along with the need for screening for disability as part of regular child development care.
The panel discussion on interventions discussed Models for Intervention Services from around the world and the benefits and challenges of implementing evidence-based intervention programs in varying cultural and economic contexts. Experiences and opinions on how to reach marginalized and low resourced populations, barriers to inter-professional collaboration, policy recommendations, and strategies for reducing the burden of ASD and NDDs on the communities, as well as inclusive education were explored. The education panel discussed the variation of needs particularly for children with ASD, the need for maximum time with same age typically functioning peers, the challenges and resources required for inclusive education and the urgent need for employable skills development within educational programs
The final day featured panel discussions on employment and supported independent living. Panelists discussed the challenges faced by persons with ASD and NDDs, both with seeking and holding down jobs. The need for supportive policy, open-minded employers and supportive family and schools was emphasized. Success stories from around the world were also shared, where employment of persons with ASD and NDDs was a financial benefit to not just the family but also the employing company. The discussion on supported independent living showcased successful models from around the world, barriers to effective institutions, culture-specific influences and the need for innovation and individuality.
Special Session: Let’s Talk Self-Advocacy
The Special Session, held on the second day of the conference (20 April 2017) focused on the voices of self-advocates with presentations by Dr. Stephen Shore from USA, Daniel Giles from Australia, and Qazi Fazli Azeem from Pakistan. The speakers focused on the importance of self-advocacy and their respective journeys to becoming self-advocates. While all three speakers are self-advocates, their individual experiences are unique, just as each person on the spectrum are different, warranting customized intervention. Despite their differences in experiences and the interventions they received, a common theme that came up was that all of them have supportive families, friends, and a sense of community; knowing one was not alone.
The speakers emphasized on the importance of developing a sense of self, and having self-awareness, as part of the process of becoming effective self-advocates. The presentations were followed by Q&A with those in the audience.
The session was chaired by Shri Faggan Singh Kulaste, State Minister, Ministry of Health and Family Welfare of India, and co-chaired by Beda Giri, Executive Director of Ability Bhutan Society. The Honorable Prime Minister of Bhutan Dasho Tshering Tobgay took a keen interest in the subject matter and attended the session.
WHO-SEARO Round Table Discussion
The Roundtable Discussion on WHO’s Collaborative Framework for Addressing Autism Spectrum Disorder in the South-East Asia Region was chaired by Dr. Thaksaphon Thamarangsi, Director, Noncommunicable Diseases and Environmental Health of WHO-SEARO, and co-chaired by Dr. Samai Sirithongthaworn, Deputy Director General, Ministry of Public Health, Thailand.
The objective of this discussion was to present a cost-effective systematic response that is structured, coordinated and feasible for low-resource countries. The discussion assisted in identifying partners and prioritizing goals for the South-East Asia region. The panelists included representatives from the government, non-governmental organizations, civil society, and international organizations, as well as professional bodies.
A short overview of the collaborative framework highlighted the challenges in the South-East Asia region, e.g. the treatment gap, lack of awareness and policies, stigma, paucity of financial, institutional and human resources, and the need for a coordinated response for inclusive development. Collaboration between and within agencies, sharing of technical resources, would ensure information systems and develop effective cross-sectoral networks.
The 11 professional workshops held concurrently, provided participants the opportunity to learn about recent developments in research and other effective programs implemented in various countries. Topics included diagnostic and intervention tools such as, Social Attention and Communication Study (SACS), the Jasper Model for inclusive learning, the Early Start Denver Model, and WHO-Autism Speaks’ Parent Skills Training program. Other workshops showcased the different ways that ASD and NDDs are being addressed in different countries and regions.
Other workshops in the three days showcased the different ways that ASD and NDDs are being addressed in different countries and regions including Bangladesh, India, South Korea, Bhutan, and Malaysia.
The closing ceremony of ANDD2017 immediately followed the WHO Roundtable on the Collaborative Framework for Addressing Autism Spectrum Disorder in the South-East Asia Region. The speakers at the closing ceremony were: Mohamed Cassim Mohamed Faizal, Honorable Deputy Minister of Ministry of Health, Nutrition and Indigenous Medicine of Sri Lanka; Zahid Maleque, Honorable State Minister, Ministry of Health and Family Welfare, Bangladesh; Lyonpo Tandin Wangchuk, Honorable Minister, Ministry of Health, Royal Government of Bhutan; and Saima Hossain, Chair of the Scientific Committee of ANDD2017, and WHO’s Goodwill Ambassador for Autism in the South-East Asia Region.
Lyonpo Tandin Wangchuk acknowledged the presence of Sheikh Hasina, Prime Minister of Bangladesh, saying it strengthened the bilateral relationship, and concluded by thanking the co-organizers.
Dr. Kinzang P. Tshering, Chair of the Technical Committee and member of the Scientific Committee for the Conference read out the Thimphu Declaration which was developed by a working group consisting of co-organizers and other stakeholders who were at the Conference.
Saima W. Hossain mentioned in her closing speech that she expects the 3 days of intense discussions, workshops and networking was educational and hopes that by committing to the Thimphu Declaration, stakeholders are making a promise to ensure that people with Autism and other NDDs in our communities, and nations have the opportunities and resources necessary to experience their right to a meaningful and productive life.
She concluded by thanking all the co-organizers, particularly Dasho Tshering Tobgay, Prime Minister of the Royal Bhutanese Government and the Royal family for their patronage. She thanked Lyonpo Tandin Wangchuk for his support, and WHO-SEARO, especially Dr. Poonam Khetrapal Singh and Dr. Thaksaphon for giving all the leverage, and support to organize the Conference.