Contents

Executive Summary 2

Welcome Remarks 2

Opening Remarks 3

Closing Remarks 4

Project Document
Autism Mapping Project in the ASEAN Region 5

Workshop Programme 9

List of Participants 11

Presentations 14

Template: Autism Country Profile 15

Insights from Autism Mapping Workshop Participants 16

Summary of Evaluation Result from the Participants 23

Photos 23

Executive Summary

Asia-Pacific Development Center on Disability (ACPD) was assigned by ASEAN Secretariat to be the Implementing Agency of the “Autism Mapping Project in the ASEAN Region” for the period of two years from May 2018 until April 2020 under the guidance of the ASEAN Senior Officials Meeting on Social Welfare and Development (SOMSWD) and with the cooperation of ASEAN Autism Network (AAN) and the support of the Japan-ASEAN Integration Fund (JAIF). In this connection, APCD conducted the first activity, “Workshop on the Development of Methodology for Mapping of Country Profile on Autism,” from 23 to 25 July 2018 at APCD Training Center, Bangkok, Thailand.

The aim of the workshop was to develop methodology on mapping of country profiles on autism, which will contribute to the development of ASEAN Profile and Policy Recommendations. The workshop saw the active and enthusiastic participation of 30 representatives from SOMSWD, AAN from 10 ASEAN countries, and concerned autism organizations in Thailand. It was moderated by the Project Manager and two consultants from Malaysia to conceptualize information regarding Autism Mapping Project in the ASEAN Region, update information regarding the national situation on autism, and develop the methodology for mapping country profiles on autism at the regional level. The result finally came out with the template of country profiles on autism to be utilized by ASEAN Member States as a framework for collecting data on autism. These country profiles will be compiled as a regional profile on autism called “Autism at a Glance in ASEAN”.

Photo: Group photo of workshop participants

Welcome Remarks

Mr. Piroon Laismit
Executive Director
Asia-Pacific Development Center on Disability

Dr. Porametee Vimolsiri, Permanent Secretary, the Ministry of Social Development and Human Security, Thailand;

Mr. Akiie Ninomiya, Member of APCD Executive Board;

Associate Professor Dr. Seow Ta Wee and Dr. Muhamad Azahar Bin Abas; the Workshop Consultants from Malaysia;

Mr. Voravud Tomon, Local Consultant;

Honorable Representatives of Senior Officials Meeting on Social Welfare and Development (SOMSWD) from ASEAN member countries;

Representatives of ASEAN Autism Network or AAN;

Distinguished Guests, Ladies and Gentlemen,

Good Morning! On behalf of APCD, I have the honor to welcome you all to APCD Training Center for the “Workshop on the Development of Methodology for Mapping of Country Profiles on Autism” under the Autism Mapping Project in the ASEAN Region. This Training Center was contributed by the Japanese Government and we have had an opening ceremony on 25 July 2005. Tomorrow will be the 13th anniversary of the APCD Training Center to empower persons with disability in Asia-Pacific region.

You all may have already been aware that about 15% of the world's population lives with some form of disability and 1% of that has been identified with autism. In the ASEAN region, for example, it is estimated that – of its 625 million population – more than 6 million are persons with autism.

Unfortunately, there is no accurate data source at the ASEAN level. Unlike physical disabilities which is easily recognizable, autism is more difficult to recognize as it is a neurodevelopmental disorder which may fall under other categories of disability. As a consequence, persons with autism are not included in the government and non-governmental organizations’ programs and services designed for the empowerment of persons with disabilities. This also impedes the creation and/or development of laws and policies for the promotion and protection of the rights of persons with autism.

The Autism Mapping Project in the ASEAN Region is then initiated to solve such problems. This project will be implemented by APCD with the support of ASEAN Secretariat and Japan-ASEAN Integration Fund. So, I would like to take this opportunity to extend my heartfelt thanks to the ASEAN Secretariat and the Japanese Government for their support of this project.

This project is considered as a pioneer project and may be replicated in other regions of the world. It will be done through the following:

- A mapping of the situation of persons with autism in ASEAN and the creation of country profiles, which will include an accurate database on the prevalence of autism in each country;

- A mapping of organizations of and for persons with autism to facilitate exchanges and cooperation between these organizations; and

- A directory of support services and interventions, which may include the newest trends and innovations available to persons with autism in the ASEAN region.

This workshop is very important as it is the beginning of the Autism Mapping Project. We hope that at the end of the workshop, we will have useful recommendations and a proper methodology for mapping country profiles on autism at the regional level. We also hope to have updated information regarding the national and regional situations on autism leading to further deliberation by ASEAN member countries.

I hope that this workshop will achieve its goal and lead to inclusion of persons with autism not only within the ASEAN community, but also globally. I sincerely wish you all a pleasant stay in Bangkok. Thank you very much.#Page 7

Opening Remarks

Dr. Porametee Vimolsiri
Permanent Secretary
Ministry of Social Development and Human Security

Khun Piroon Laismit, Executive Director, Asia-Pacific Development Center on Disability;

Mr. Akiie Ninomiya, Member of APCD Executive Board;

Honorable Representatives of the Senior Officials Meeting on Social Welfare and Development (SOMSWD) from ASEAN member countries; Representatives of ASEAN Autism Network;

Distinguished Guests, Ladies and Gentlemen,

It is a great pleasure for me to have the honor of delivering the opening remarks of this workshop today. On behalf of the Ministry of Social Development and Human Security, I would like to welcome all the participants from both the government and non-governmental organizations of all ASEAN member states to Thailand.

First of all, I would like to express my deepest appreciation for all organizations and persons, especially the APCD Foundation who have made a great effort in organizing this workshop. This workshop is concerned with autism mapping, which is new and unfamiliar to many people and organizations both of and for persons with autism in most ASEAN member states including Thailand.

You may already be aware that autism doesn't just affect children but also their families and society. If 1% of the total world population has been identified with autism, according to the remark of Khun Piroon Laismit, this means that there are around 700,000 persons with autism in Thailand and if we include their parents, autism will be a big part of daily life for 2.1 million people of Thailand or for 19.5 million people in the ASEAN region. That’s an enormous number. Without proper understanding and reliable data, persons with autism and their families are at risk of being isolated and developing mental health and social problems. The right support at the right time can make an enormous difference to these people's lives.

Ladies and Gentlemen,

Thanks to the efforts of APCD and the support of ASEAN Secretariat and the Japanese Government, I strongly believe that this workshop will help provide a comprehensive overview of and provide guidelines for quality care and support for persons with disabilities especially persons with autism in every country in the ASEAN region.

Once again, I am very happy in welcoming all of you to this workshop and do hope that, if possible, you will spare some time to enjoy your stay in Bangkok and learn more about the Thai cultural heritage. Finally, I wish you all a successful workshop and continued collaboration in the near future. Thank you.

Closing Remarks

Mr. Pongwattana Charoenmayu
Project Manager
Autism Mapping Project in the ASEAN Region

Honorable Representatives of Senior Officials Meeting on Social Welfare and Development (SOMSWD) from ASEAN member countries;

Representatives of ASEAN Autism Network;

Distinguished Guests, Ladies and Gentlemen,

Good afternoon, on behalf of APCD, Khun Piroon Laismit, Executive Director of APCD, asked me to inform you that APCD has the honor to thank you all for your active participation in the “Workshop on the Development of Methodology for Mapping of Country Profiles on Autism” under the Autism Mapping Project in the ASEAN Region.

This ASEAN project could not be implemented without the support of ASEAN Secretariat and Japan-ASEAN Integration Fund, also the guidance of SOMSWD and the cooperation with AAN of all ASEAN member countries. So, we would like to take this opportunity once again to extend our heartfelt thanks to all of the concerned organizations.

This workshop is very important as it is the beginning of the Autism Mapping Project. At the end of the workshop, thanks to everyone, we have gotten useful recommendations for mapping country profiles on autism. We also have updated information regarding the national and regional situations on autism. In the next few days we will send you the draft content of the country profile on autism for further improvement and approval before asking the responsible agency of each country to fill in the data and we will compound them to produce a document “Autism at a Glance in ASEAN’ and disseminate in the ASEAN region, including through online platforms.

In this Autism Mapping Project, we also have a plan of further cooperation with ASEAN member countries, such as supporting each country to organize both the national autism awareness event and the national workshop for the development of policy recommendations on autism. Those policy recommendations at the national level will be finalized and adopted at the regional workshop in Thailand.

Finally, we would like to thank everyone again for making this workshop successful and leading to the next steps of cooperation which all aim at empowering persons with autism not only within the ASEAN community, but also other regions. Lastly, I sincerely wish you all a pleasant journey back home. Thank you very much.

Project Document
Autism Mapping Project in the ASEAN Region

1. Brief Project Description

About one percent of the world’s population has been identified with autism. It is estimated that around 6 million persons with autism live in the ASEAN region, which is home to more than 625 million people. However, there is no accurate data source at the ASEAN level to validate the above estimate. In addition, a mapping of organizations of and for persons with autism, as well as support services and interventions available for persons with autism, is not yet existing at the ASEAN level. The above information are vital as a basis for developing laws and policies to protect the rights and promote the empowerment of persons with autism in ASEAN.

The proposed project aims to contribute towards the promotion and protection of the rights and empowerment of persons with autism in the ASEAN region. This will be done through a mapping of the situation of persons with autism in ASEAN and developing country profiles, which will include compiling an accurate data source on the prevalence of autism; developing a mapping of organizations of and for persons with autism to facilitate exchanges and cooperation between these organizations; and establish a directory of support services and interventions, which may include the newest trends and innovations available to persons with autism in the ASEAN region. The data and information generated by the mapping exercise will inform policy and program development that purposively targets persons with autism. Such data and information will be cascaded to the relevant government agencies and civil society organizations. This will be done through the conduct of workshops and events at the regional and national level to increase the awareness on autism in ASEAN.

The proposed project will be implemented for a period of two years by the Asia-Pacific Development Center on Disability (APCD), as the Implementing Agency, under the guidance and oversight of the Senior Officials Meeting on Social Welfare and Development (SOMSWD) and ASEAN Secretariat.

2. Background and Justification

2.1. Problem Analysis

It is estimated that one percent of the global population has autism, which translates to an estimated 6 million persons with autism in ASEAN. However, there is no reliable data source at the ASEAN level that can validate this estimate. This absence of reliable data source exemplifies the need to properly identify persons with autism as they are not often included in various surveys targeted to persons with disabilities. Unlike physical disabilities which is easily recognizable, autism is more difficult to recognize as it is a neurodevelopmental disorder that may fall under the category of hidden disabilities. Without being properly identified and counted, persons with autism risk being excluded even among persons with disabilities themselves and, as a consequence, are not included in programs and services designed for the empowerment of persons with disabilities.

The absence of a reliable data source on persons with autism in ASEAN impedes the development of laws and policies for the promotion and protection of the rights of persons with autism. Although persons with autism are now mentioned in regional instruments, such as the Incheon Strategy to Make the Right Real in Asia and the Pacific 2013-2022, more emphasis needs to be made on what could be done to promote and protect the rights and empowerment of persons with autism at the ASEAN level. However, there is an opportunity to leverage the consensus of the ASEAN Member States to cooperate with one another to address the issues faced by persons with disabilities, including persons with autism, as embodied in key regional instruments, such as the Bali Declaration on the Enhancement of the Role and Participation of Persons with Disabilities in ASEAN Community (2011), Mobilization Framework of the ASEAN Decade of Persons with Disabilities (2011- 2020), ASEAN Declaration on Strengthening Social Protection (2013), Regional Framework and Action Plan to Implement the ASEAN Declaration on Strengthening Social Protection (2015), and the Regional Plan of Action on the Elimination of Violence Against Women (RPA on EVAW) and Regional Plan of Action on the Elimination of Violence Against Children (RPA on EVAC) (2015).

2.2. Regionality

The proposed project directly relates to the ASEAN Socio-Cultural Community Blueprint 2025, which envisions to move towards a more inclusive ASEAN community. This entails the promotion of equitable access to social protection, reduce inequality, promotion and protection of human rights, provide guidelines for quality care and support for persons with disabilities including persons with autism.

While finding solutions to the problem and its causes can be difficult, it can be addressed at the regional level such as ASEAN considering the existing platforms of cooperation among the ASEAN Member States and regional cooperation initiatives such as the implementation of the Bali Declaration on the Enhancement of the Role and Participation of the Persons with Disabilities in ASEAN Community and the ASEAN Decade of Persons with Disabilities (2011-2020).

2.3. Participation

The proposed project requires the active participation of all ASEAN Member States to promote the empowerment and inclusion of persons with autism in the ASEAN region.

In particular, SOMSWD and the SOMSWD Focal Points in each ASEAN Member State will be tapped to ensure the successful conduct of planned activities.

2.4. Beneficiaries

The direct beneficiaries of the proposed project will include organizations of and for persons with autism, and persons with autism and their families. The indirect beneficiaries will include all ASEAN Member States and the general community.

2.5. Project History

The Project will be the first of its kind at the ASEAN level with a particular focus on autism. The United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP) does have their own “Disability at a Glance” series, which focuses on developing country profiles on disability in Asia and the Pacific and can serve as a reference for the proposed project.

The ASEAN Autism Network (AAN) is a platform for autism-related family support groups of each ASEAN member country to collaborate, cooperate, coordinate, and unite in developing a holistic curriculum exclusively for autism that is local, affordable, accessible and inexpensive to ensure sustainability throughout the life-span of individuals with autism. AAN was established with “Family Comes First” as a core concept during the 1st ASEAN Autism Congress organized by APCD in cooperation with JICA in Bangkok, Thailand on 13-15 December 2010. The vision of AAN is to have an inclusive, rights-based, and autism-friendly ASEAN Community while its mission is to support, assist, facilitate and enhance autism-related family support groups in collaboration with other stakeholders in the ASEAN region and globally.

2.5.1. Members

The members of AAN are the following:

1) SMARTER Brunei

2) Cambodia Intellectual Disability and Autism Network

3) Yayasan Autisma Indonesia

4) Association for Autism, Lao PDR

5) National Autism Society of Malaysia

6) Myanmar Autism Association

7) Autism Society Philippines

8) Autism Network Singapore

9) Autistic Thai, Thailand

10) Vietnam Autism Network

2.5.2. Frequency of Meetings

The General Assembly of the AAN is scheduled every two years in conjunction with the holding of the AAN Congress. These general assemblies were conducted during the 1st ASEAN Autism Congress in Bangkok, Thailand on 13-15 December 2010, the 2nd ASEAN Autism Network Congress in Brunei Darussalam from 27-29 April 2013, and the 3rd ASEAN Autism Network Congress in the Philippines from 15-17 January 2016. The next general assembly will be conducted during the 4th AAN Congress scheduled on 20-21 October 2018 in Indonesia, where AAN is currently applying for accreditation with the ASEAN Secretariat. Executive committee meetings are also held during the above-mentioned congresses and organized both online and offline during autism-related activities where AAN members are participating.

2.5.3. Discussion Topics of Meetings

The topics of discussion during AAN meetings include the following:

1) Autism-related activities reported by each country representative

2) Financial report of the network

3) Planning of the activities of the network

4) Planning of AAN congresses

3. Objectives

The overall objective of the proposed project is to contribute to the promotion and protection of the rights and empowerment of persons with autism in the ASEAN region. This will be done through the mapping of autism in the ASEAN region on the aspects of data availability on the prevalence of autism; mapping of organizations concerned with autism; and identifying support services, newest trends and innovations related to autism. The above information will be vital for the development of laws and policies to promote and protect the rights and empowerment of persons with autism in ASEAN.

In addition, the proposed project will promote regional cooperation initiatives to support ASEAN Member States in implementing the Bali Declaration on the Enhancement of the Role and Participation of the Persons with Disabilities in ASEAN Community and the ASEAN Decade of Persons with Disabilities (2011-2020) with an added emphasis on persons with autism. Significantly, the proposed project is aligned with the 2030 Agenda on Sustainable Development, specifically in pursuing the principle of “leave no one behind”.

4. Outputs, Indicators and Activities

The project outputs and corresponding indicators are as follows:

4.1. Output 1: An ASEAN profile on autism is developed.

Indicators:

1) Methodology on mapping of country profiles on autism is developed.

2) Country profiles on autism for each ASEAN Member State is developed. (To include prevalence of autism, laws and policies related to autism, government focal points and organizations related to autism, support services for persons with autism, autism-related activities, among others.)

3) An 'Autism at a Glance in ASEAN' document highlighting country profiles on autism in ASEAN is published and disseminated in the ASEAN region, including through online platforms.

4.2 Output 2: Developed policy recommendations by the ASEAN Autism Network and its members

Indicators:

1) Policy recommendations to promote and protect the rights of persons with autism are developed by ASEAN Autism Network and its members

2) Policy recommendations are adopted by ASEAN Member States at the regional level.

4.3. Output 3: A mechanism for celebrating an annual Autism Awareness Day is developed at the ASEAN level.

Indicators:

1) A national autism awareness event is jointly organized and conducted annually by organizations of persons with autism and their families in each ASEAN Member State. The national autism awareness event in each ASEAN Member State will be in accordance with the unanimous declaration of the United Nations General Assembly of 2 April as World Autism Awareness Day (A/RES/62/139) to highlight the need to help improve the quality of life of those with autism so they can lead full and meaningful lives as an integral part of society.

2) A regional autism awareness event is jointly organized and conducted for the 4th ASEAN Autism Network (AAN) Congres in 2018 in Indonesia.

5) Management and Implementation Arrangements

The sponsoring ASEAN body will be the Senior Officials Meeting on Social Welfare and Development (SOMSWD). SOMSWD will provide guidance and exercise oversight functions during the implementation, and monitoring and evaluation of the project.

ASEAN Secretariat, through the ASEAN Socio-Cultural Community (ASCC) Department, will facilitate the coordination between SOMSWD and the Implementing Entity. ASEAN Secretariat will support SOMSWD and the SOMSWD Focal Points in monitoring the progress of project implementation.

The Implementing Entiry of the proposed project is the Asia-Pacific Development Center on Disability (APCD).

The proposed funding source is Japan-ASEAN Integrated Fund, JAIF 2.0 Thailand.

Workshop Programme

Day 1

Monday, 23 July 2018

8:30-19:00 - Arrival of participants and check in to accommodation

19:00-21:00 - Welcome dinner

Day 2

Tuesday, 24 July 2018

8:30-9:00 - Registration and preparation

9:00-10:00 - Opening ceremony and Project Introduction

10:00-10:30 - Session 1: Stakeholders analysis (Stakeholder Analysis Matrix)

10:30-10:45 - Coffee Break

10:45 - 12:00 - Session 2: Identify relevance of Policy and Acts Related to Autism in each ASEAN country

12:00-13:00 - Lunch

13:00-15:00 - Session 3: Analyze the governance structure of autism in ASEAN countries

15:00-15:15 - Coffee Break

15:15-17:00 - Session 4: Classification of autism/autism status in each ASEAN countries

17:00-19:00 - Session 5: Country report presentation

19:00-21:00 - Free time

Day 3

Wednesday, 25 July 2018

8:30-9:00 - Registration and preparation

9:00-10:00 - Recap of the previous day and country report presentation (continued)

10:00-10:30 - Session 6: Analyze the strengths, weaknesses, opoprtunities, and threats for autism in ASEAN countries

10:30-10:45 - Coffee Break

10:45-12:00 - Sessions 7 & 8: Snowball Card - SWOT Analysis Reflection/Brainstorming

12:00-13:00 - Lunch

13:00-15:00 - Participants prepare to leave APCD Training Center

15:00-15:15 - Coffee Break

15:15 - 21:00 - Departure of participants

Session Objectives

24 July 2018 (Thursday)

Activities/Methodology: Institutional analysis (ASEAN Countries Profile)

Session:

Morning:

1) Stakeholders analysis (Stakeholders Analysis Matrix: Potential actors such as relevant Ministry; SOMSWD, AAN member, etc., role and responsibility, power/authority of each actor, influence in decision making, etc.)

2) Identify relevance Policy and Acts related to autism in each ASEAN countries

Afternoon:

3) Analyze the governance structure of autism in ASEAN countries (identify how the information/data/instruction being transfer between primary stakeholder, 2nd stakeholders; and how decision-making related to autism is executed.

4) Classification of autism/autism status in each ASEAN country

5) Country report presentation

Expected Outcome:

- Institution structure (Venn diagram) related to autism in each ASEAN countries

- List of Policy and Acts related to autism of each ASEAN countries

- Governance structure of each ASEAN country in autism management

Session Objectives

25 July 2018 (Wednesday)

Ativities/Metholody: Situational analysis (SWOT analysis)

Session:

Morning:

1) Analyze the strengths, weaknesses, opportunities, and threats for autism in ASEAN countries.

2) Snowball Card: Each person writes a SWOT analysis on a 5x7 (or larger) card and sticks the card on the wall. The group then develops four lists of strengths, weaknesses, opportunities, and threats, eliminating overlap, to discuss, compare, and analyze.

3) Reflection/brainstorming

Expected Outcome:

- List of strengths for each ASEAN countries in developing autism programs, etc.

- List of weaknesses (Problem Tree)

- List of strategies to improve programs related to autism from the opportunities that have been identified (Decision Matrix)

- List of threats and steps to minimize the effects.

- Result tree/result chain (summary of the outcome from SWOT analysis)

List of Participants

Brunei Darussalam

Community-Based Rehabilitation (CBR) Center for Disability, Department of Community Development

Ms. Nurul Aziemah - Senior Instructor

aziemah.zmh@gmail.com

Ms. Dayangku Razainah - Instructor
razaeyna09@gmail.com

SMARTER Brunei

Shri Malai Hj Abdullah Hj Malai Othman - President

bjaksmarter@gmail.com
; +67 32 654 812

Cambodia

Hands of Hope Community (HHC)

Mr. Chan Sarin

chan.sarin@hhccambodia.org; +855 12 777 042

Indonesia

Ministry of Social Affairs of Indonesia

Mr. Marjuki - Senior Advisor for Social Accessibility

marjuki@kemsos.go.id; +6221 310 0407/ 310 7716

Autism Foundation of Indonesia

Mr. Taufiq Hidayat

topik.botak@gmail.com;
+62 87 7766 57707

Lao PDR

Ministry of Labour and Social Welfare

Mr. Berthor Tongpaothor - Deputy of the Head of the Division

beuthor58@hotmail.co.uk; +856 21 250 131

Association for Autism Laos

Mr. Schultze Michael Alfred

michael.schultze@klebreis.de;
+85 621 330 409

Malaysia

Department of Social Welfare

Ms. Norasnida binti Nordin - Principal Assistant Director

norasnida@ikm.gov.my; 603 832 32491

National Autism Society of Malaysia

Mr. Razin Murat

encik.razin@gmail.com;
+603 7832 1928

Faculty of Technology Management & Business, University Tun Hussein Onn Malaysia

Associate Professor Dr. Seow Ta Wee

Consultant

Faculty of Earth Science University Malaysia Kelantan (UMK) Senior Lecturer

Dr. Muhamad Azahar bin Abas

Consultant

Myanmar

Myanmar Autism Association

Mr. Nay Myo Naing

naymyo.daniel@gmail.com
; +959 975 744 989

Philippines

Undersecretary, Department of Social Welfare and Development

Ms. Florita Rubiano Villar

frvillar@dswd.gov.ph; +63 95 122 39

Autism Society Philippines

Ms. Maria Mona Liza Magno Veluz

monaveluz@gmail.com
; +63 917 882 9665

Singapore

Senior Education Psychologist, Community Psychology Hub, SG Enable, Singapore

Dr. Law Gloria Chun Yi

gloria.law@cph.sg; +65 65056464 ext. 202/+65 962 225 34

Rainbow Centre, Singapore

Mr. Yew Teng Leong

yewtengleong@gmail.com
; +65 973 90533

Thailand

Expert on Empowerment of Persons with Disability, Department of Empowerment of Persons with Disability

Ms.Vijita Rachatanantikul

vijita.racha@gmail.com

Foreign Relations Officer, Foreign Affairs Division, Office of the Permanent Secretary, Ministry of Social Development and Human Security

Mr. Siripong Sriarkha

Autisticthai Foundation

Mr. Samrerng Virachanang

samrerngv@hotmail.com;
+66 95 963 2112

Senior Academic Officer, Special Education Bureau, Office of Basic Education Commission, Ministry of Education

Mr. Samart Ratanasakorn

Representative of Thai Agencies

Medical Physician, Senior Professional Level, Yuwaprasart Waithayopatum Child Psychiatric Hospital

Ms. Rinsook Ongarjsakulman

Representative of Thai Agencies

Registered Nurse, Professional Level, Yuwaprasart Waithayopatum Child Psychiatric Hospital

Ms. Swowaruk Meunsontron

Representative of Thai Agencies

Chairman on Welfare Department Disabilities Thailand

Mr. Charoen Khuwinphunt

Representative of Thai Agencies

Associate Director, SEA Consulting Co.,Ltd.

Mr. Voravud Tomon

Consultant

Vietnam

Official – Social Assistance Department, Ministry of Labour, Invalids and Social Affairs, Vietnam

Ms. Trinh Thi Nguyet

nguyetnchu@gmail.com
; +84 914 100 312

Vietnam Autism Network

Ms. Hoang Ngoc Bich

bich.hanoi@gmail.com

Presentations

Cambodia

The presentation from Cambodia titled 'Country Report: Cambodian Autism Mapping Project' discussed the current status of autism in Cambodia, ranging from the number of persons with autism, to the diagnoses and services offered, government policies, benefits and support from various organizations, and the recommendations in relation with the planned autism mapping activity in Cambodia.

Lao PDR

The report presented by the Association for Autism delineates the current situation of autism in Lao PDR, organizations supporting autism, educational and medical services available, the organizations responsible for mapping and its recommendations to the ASEAN Autism Mapping project, including the development of a consistent questionnaire, less costly form of interviews, budget and timeline, to name some.

Malaysia

The presentation from Malaysia, titled, 'ASEAN Autism Mapping Project' Workshop Sharing discussed the following topics: Brief situation on autism in Malaysia; recommendation on country profiles on autism; organizations and self-help groups for autism in Malaysia; available intervention and support srvices including trends and innovations; organization responsible for mapping country profiles; recommendations on approach and methodology for mapping; recommendation on coordinator for mapping and data collection.

Myanmar's presentation offered an overview of disability in the country and the law related to it. It also discussed the situation of persons with intellectual disability and the kinds of services it needs, including screening services, special needs schools, as well as listed down its recommendations, such as connecting the project with government organizations and ministries, INGOs, special needs schools and professionals, among others.

Singapore

The presentation on 'Autism in Singapore' centered around an overview and current situationer of autism in the country, autism profiles, key trends, autism services and programmes, and references. It also featured Singapore's Enabling Masterplan 2017-2021 for persons with disabilities, including those with autism.

Thailand

The report on the 'Autism Situation in Thailand: The Autism Mapping Project, APCD' featured a range of topics including a backgrounder and situational analysis. It also described the various activities for persons with autism by the Autism Thai Movement as well as ongoing challenges and current national and regional network and alliances.

Vietnam

Vietnam Autism Network reported on the organization's vision and mission, as well as goals. It also gave a brief situationer on autism in the country, its challenges, plus shared a directory of support services and intervention available for persons with autism. Furthermore, the report also touched on the collaboration between Vietnam and other Asian countries.

Template: Autism Country Profile

I. Introduction (Including country background, etc.)

II. Methodology (How to collect data)

III. Lay and Policy (Concerning persons with disabilities including autism)

A. Defining Autism (including a diagnosis system used in the country)

B. International Commitments (Including international organization participation and regional instruments such as UN, Incheon Strategy etc.)

C. National Legal and Policy Framework (Including the governmental structure of organizations concerning persons with disabilities, especially persons with autism)

IV. Stakeholders (Providing detailed information of the following)

A. Government Bodies (Responsible for data collection and providing support services/interventions throughout the country)

B. Non-Government Organizations (of and for persons with autism)

V. Statistic data on Autism (Including the situation and prevalence of autism with the identified source of data)

A. Social welfare

B. Health

C. Education

D. Human resources

E. Other resources

VI. Programs and Services for Persons with Autism (Provided by governmental and non-governmental organizations)

A. Early intervention

B. Health

C. Education

D. Employment

E. Social services (i.e. benefits system, incentives, etc.)

VII. Challenges (including risks or obstacles and how they will be mitigated)

VIII. National Strategy (concerning persons with disabiliting including autism)

IX. Conclusions and Recommendations

X. Directory Support

Annex

References

Remark:

The template has been agreed upon at the “Workshop on the Development of Methodology for Mapping of Country Profile on Autism” under the ASEAN Secretariat’s Project “The Autism Mapping Project in the ASEAN Region” on 23 - 25 July 2018 at APCD Training Center, Bangkok.

Insights from Autism Mapping Workshop Participants

Representatives of SOMSWD

Brunei

Ms. Dayangku Razainah

Instructor of Community-Based Rehabilita-tion (CBR)

Ms. Nurul Aziemah

Senior Instructor of CBR, Department of Community Development, Ministry of Culture and Sports, Brunei (SOMSWD)

We would like to thank you for inviting us to this workshop and we are very delighted to attend these fruitful discussions. In Brunei, we are in the process of improving and implementing best practices for persons with disabilities, including persons with autism. We are sure these inputs from the workshop will help improve our data collection, especially in autism.

Our next steps after this workshop is to discuss with our fellow teachers and instructors. We will practice all that have been suggested here in the workshop and then see if these fit our students’ needs.

Indonesia

Mr. Marjuki

Senior Advisor for Social Accessibility, Ministry of Social Affairs

This meeting is very valuable for me because autism is increasing in Indonesia. It is important for us to create a program in the future in collaboration with APCD and other stakeholders to ensure their rights get better. This is very important for me as a representative of the In-donesian government.

The challenge in Indonesia is the lack of data and lack of awareness among the general population about autism. There is also a lack of research, as well as doctors that will help in the intervention and guidance for persons with autism in having better lives. Furthermore, there is a lack of human resources and facilities. We do have laws for persons with disabilities and autism in included in our disability law.

There are 19 government departments that are involved in disability issues and 26 rights of persons with disabilities to fulfill. The government is currently doing all it can to implement such laws. It is very important to change people’s awareness and knowledge about autism because there is a lot of stigma attached to autism.

Lao PDR

Mr. Berthor Tongpaothor

Deputy of the Head of the Division, Ministry of Labour and Social Welfare

In Lao PDR, we have the National Committee for Persons with Disabilities and the Elderly, which helps organizations working with disabilities, including autism. We also have the Association for Autism Laos, which is an NGO responsible for the development of autism rights and other issues in Lao PDR.

With this mapping project, we will collaborate closely with the Association for Autism Laos. On the national level, we have a national policy, strategy, and action plan for persons with disabilities where we have lots of content to implement. We are currently in the process of getting the approval for these activities from the government. As with other ASEAN countries, we also don’t have a clear and specific data for autism so when we come back, I will discuss with Laos SOMSWD and representatives from the Association for Autism Laos all about this project and how we can best implement this in the coming months.

Malaysia

Ms. Norasnida binti Nordin

Principal Assistant Director, Department of Social Welfare

In Malaysia, we are paying attention to all categories of persons with disabilities including those on the autism spectrum through the Persons with Disabilities Act 2008 (Act 685). In Malaysia, we have seven categories of persons with persons with disabilities and autism falls under the learning disability category. As of June 2018, we have almost 20,000 persons with autism registered with the Department of Social Welfare of Malaysia.

Right now, the Malaysian government is trying to improve the services for persons with disabilities and autism and we are trying to increase awareness among communities about autism, including how to improve their lives based on data from various ministries giving services to persons with autism.

Philippines

Ms. Florita Rubiano Villar

Undersecretary, Department of Social Welfare and Development

Coming from social welfare, I am very interested in this autism mapping project as this would further improve our services and programs for children with autism and their families. As a social worker, I know we can also help persons with autism by working with the families caring for them.

As discussed, all ASEAN countries are signatories to instruments like the Convention on the Rights of the Child (CRC), Convention on the Rights of Persons with Disabilities (CRPD), and the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW). Although there was no specific mention of autism in those instruments, the focus on the welfare of persons with disabilities are also very pronounced in those documents whether they are children or women with disability. In terms of gaps, my concern is especially for children because they are the ones that would need more attention so they don’t become adults with severe degrees of autism. Early detection and early intervention are important in order to minimize, if not eradicate, the ill effects of autism on those children and adults later on.

Having a good database is necessary because if you want to develop programs, you should be able to understand who they are, where they are, what kind of family they have, what the services are provided to them. In the Philippines, we have a national household targeting system for poverty reduction. That is one of my motivations in attending this workshop because if there’s a way that I can also use that targeting system to determine who and where persons with autism are, then that is a good start. The Philippines has a strong autism association but I think we can still benefit on having a strong database on autism.

As for strong partnerships, we have an interagency council on disability and NGOs that could help us implement specific programs for persons with autism. It’s just a matter of getting our acts together. No single agency can promote and respond to all the needs of kids and persons with autism. It is important to also work with their families. We need to start early on. We need not wait until they become adults before we provide the needed services. Early cure, prevention, and early response will be needed and if we catch them early in life, children with autism will have better chances of becoming highly functioning persons with autism.

Singapore

Dr. Law Gloria Chun Yi

Senior Education Psychologist, Community Psychology Hub, SG Enable

In Singapore, we have more than 200 newly diagnosed cases of autism each year and this group of children is of our special concern. We have centers, early intervention centers, schools, and day activity centers for adults with autism but there is more we can do. I consider it a great privilege to join this workshop on autism mapping because it is important to come together with other members of ASEAN to discuss important issues, especially on topics that will help improve the life of persons with autism.

Thailand

Ms. Vijita Rachatanantikul

Expert on Empowerment of Persons with Disabilities, Department of the Empowerment of Persons with Disabilities

In Thailand, we have about 1.9 million persons with disabilities and 11,000 registered persons with autism. We know that there are more persons with autism who are unregistered due to many barriers. Among the problems we face is that children with autism are not properly assessed by doctors and thus have no early intervention.

This mapping project will be very helpful to us as it would complement the roadmap for au-tism that we have at the moment. The roadmap consists of institutional research for autism in Thailand, which they have started in Khon Kaen province. We are also developing further a project for persons with autism, which constitutes of several aspects including a 24-hour day care centers or homes for children with autism to help parents who don’t have time to take care of their children when the need arises.

Mr. Siripong Sriarkha

Foreign Relations Officer, Foreign Affairs Division, Office of the Permanent Secretary, Ministry of Social Development and Human Security

Persons with autism are invisible in the disability sector. They are perhaps the first group we have forgotten and the last group to be seen and heard. Their rights and freedom should be protected and promoted. The ASEAN Autism Mapping project is a wonderful project that will bridge the gap between supply and demand. Demand is from persons with autism and their parents, while the supply side is from the government, ministries and relevant stakeholders.

One of the challenges is identifying persons with autism. We don’t have a common definition of persons with autism. Having access to their rights as persons with autism are one of the main challenges in Thailand and in other ASEAN countries. But we also have strengths and one of these are the parents organizations and associations of and for persons with autism in Thailand and the rest of ASEAN. We also have the support from government in terms of the promotion of employment and entrepreneurship. One example would be the success of the 60+ Plus Bakery and Cafe project, a very good example of inclusive entrepreneurship that can be showcased everywhere in ASEAN and the rest of the world.

Vietnam

Ms. Trinh Thi Nguyet

Official, Social Assistance Department, Ministry of Labour, Invalids and Social Affairs

Our government always try its best in supporting all persons with disabilities, including persons with autism. We give monthly support and other activities to assist persons with disabilities coming from
very difficult circumstances. We also cooperate closely with NGOs and volunteers to help persons with disabilities in communities. We really hope persons with disabilities, including those in the autism spectrum, will have a more comfortable life and have them integrate into the community so that they can have peaceful and productive lives. We are trying to raise more awareness and conduct capacity-building trainings for people who support and work directly with persons with disabilities. At the same time, we are developing our social workers on various levels, as well as implement government policies to support more persons with disabilities in the future.

I hope that after this workshop, and with the cooperation between government and NGOs, persons with disabilities in Vietnam can get more benefits and more support that will help them integrate and have better lives.

Representatives of AAN

Brunei

Shri Malai Hj Abdullah Hj Malai Othman

Founder/President/COO, SMARTER Brunei

My son was diagnosed with autism in 2001 and when I first started my organization, services in Brunei about autism was almost zero. Information was non-existent, which is the reason I started SMARTER Brunei. We have achieved a lot since then and now we have been recognized according to international standards, with a world-class quality service and the best in the region because we managed to have all 14 gold stars in the key performance indicators for our organizations. We are also at par with the best, according to the National Autistic Society of United Kingdom and we have also met all the 19 criteria for autism under the European Parliament.

So we are doing everything right. But, unfortunately, this is only for our organization. The country itself is still not properly coordinated. For example, we have different statistics from different stakeholders, such as the ministries of health, education, culture and sports, religious departments and some other NGOs, resulting in the duplication of statistics. At the moment, statistics is not one of our strengths. Stakeholders are not working together and are working in silos. They have different strategies, too. It is our hope that with this autism mapping project, we will be able to have one page from the same book. At the moment, we are on the same page but everybody have different books, so to speak. It is not coordinated and synergized. We are not yet mature in the approach because there is not one standard operative procedure.

Cambodia

Mr. Chan Sarin

Executive Director, Hands of Hope Community

The Government of Cambodia is strongly supportive of persons with autism especially when it comes to policy and law. We have teachers working on special education on a national level and supported by government through subsidized funding. While we are not working for autism directly, we are providing trainings to local teachers on special education. Autism is developing fast. About 5-6 years ago, everyone thought that intellectual disability and autism are the same. Now we know that they aren’t. Now, awareness and campaigns about autism is moving under the support of government, NGOs, schools, and teachers, among others.

Personally, autism is a new topic for me because we don’t have a clear information on au-tism. But after learning more about this (and what we have learned from this workshop), we are going to share this among our members in Cambodian Intellectual Disability and Autism Network (CIDAN) and we will see what we can do. The challenge now is vocational training skills and job employment right now. We already have education and trainings in place courtesy of the government for children with autism. But the question is how can we find jobs for them. We hope that in the next few years, we will have clear data of persons with autism and have employment opportunities for them. Our government is working with NGOs to make this goal a reality.

Indonesia

Mr. Taufiq Hidayat

Autism Foundation of Indonesia

I find this workshop very interesting because this will be the first time autism mapping will be held in this scale. We don’t have specific data about autism and government can’t do much more without these data so this is a very good endeavor.

Demographically and geographically, Indonesia is very big. In our 2017 census, we have about 261 million population and we have 17,000 islands. With such a big scope, it is quite a challenge to do the mapping, especially considering that people and government know little about autism. So we need to create and increase awareness about persons with autism and to identify them so that government and stakeholders can do something to help them.

At the moment, intervention about autism is mostly done by more qualified persons in the private sector, which costs more money. Hopefully with the data and with more government intervention, we could reduce the cost and get more things done. Right now, there is generally more and better awareness about autism in big cities. This is different in rural areas as they tend to hide persons with autism and not give them proper treatment. There is a huge gap between cities and villages.

Lao PDR

Mr. Michael Alfred Schultze

Association for Autism Laos

The autism situation in Lao PDR is a little bit difficult because this was not known for a very long time. Our Association started as a parents organization 15 years ago to get families together and to organize services for the children. We are a registered non-profit organization and is a training center for children with autism with offices in Vientiane and Pakse. What we are lacking most in the country are experts in many fields, including teachers, special education teachers, speech and occupational therapists, among others.

This autism mapping project is a worthwhile undertaking as it tries to capture an overview of the situation. In terms of proper statistics, Laos can contribute not much at this time. But we hope to learn a lot from this meeting and maybe in the future we will have better databases to contribute. One big benefit of this project is the fact that we are able to see all old friends from AAN, which we have been a part of since 2010. This allows us once again to exchange information since our last meeting.

I would anticipate that the absence of real, reliable data on autism is prevalent in the region. It is good to be able to learn the approach of more developed countries as it’s a big support for less developed countries like Laos. Having more reliable information will greatly help us to get a better understanding on what policies are needed in our country.

As advisor to the board of the Association, I will inform them of what went on here. Then we can start to look for more information. We also need to contact more institutions and stakeholders and see what additional information we can get so we can support APCD and others in getting this project off the ground.

Myanmar

Mr. Nay Myo Naing

Myanmar Autism Association

At the moment, we don’t have any specific data related to autism. When we look at the size of Myanmar’s population - 21.4 million according to the 2014 Census - we are looking at an average of 1 in 100 people having autism. Every year, we receive around 4,500 new autism cases, which we can’t determine or monitor properly as we don’t have a proper diagnostic facility in our country. What we can do is to have a general screening of children who are suspected of having autism and we try to give them proper intervention, which is quite limited too. At the moment, we have around 24 special needs schools which accommodates 0-12 children with autism. Only one is state-run and the rest are private, which means these are very costly to the family. Other difficulties include the distance from school to facilities or schools, with majority being located in bigger, selected cities only. Obviously, a lot of children with autism cannot access these services.

The ASEAN Autism Mapping project will help us identify the needs of persons with autism. Through this we will be able to talk to our government and push them to have specific policies for children with autism, plus create specific laws on autism. Myanmar Autism Association can work with special needs schools. We also have a good relationship with the Ministry of Social Welfare, Relief and Resettlement, and we can also connect with the Ministry of Health and Sports. This will help us bring together professionals working independently for children with autism. This project will help us coordinate with all stakeholders in the country.

Philippines

Ms. Maria Mona Liza Magno Veluz

President, Autism Society Philippines

We have been a very quiet community but over the last couple of years, there has been a surge of advocacy, a surge of enthusiasm in making sure persons with autism go to the mainstream. We feel this enthusiasm in government and in the private sector, and there’s that collective desire to have acceptance, accommodation, appreciation of persons on the autism spectrum.

The ASP has done a lot of work in terms of mapping because we are a nationwide organization and we have 94 chapters all over the Philippines. In order to really scale our efforts in mapping what services, what resources are available in different areas. We need to have that government muscle so we can scale our efforts and this engagement has put me in touch with our local government as well as others from other countries and their experiences. Expertise brings best practices on the table and we can all share from that knowledge.

I’m just very enthusiastic and excited for this effort. There will be challenges in everything and I have decided to see the possibility, to see the partnership among parent organizations and government. We are going to be able to access research organizations within the Philippines, and get a lot of things done.

Vietnam

Ms. Hoang Ngoc Bich

Chairperson, Vietnam Autism Network

I really appreciate the way this workshop has been conducted. We have learned the methodology on how to build profiles on autism, which is a good way to start the autism mapping in Vietnam. It is also a very good opportunity for us to be able to work with officers from MOLISA because they are the ones who implement the policies on autism in Vietnam together with the health and education ministries. It is certainly much better to cooperate with government.

Like what others have said, the major challenge in terms in autism mapping is the lack of very basic data. No government organizations has been doing any research about persons with autism. We are lacking in numbers and data from both government and other organizations that are supposed to have the numbers. This is one of the more problematic things as I don’t know where to get the baseline data to put into the mapping profile. But we will definitely work with government agencies on this.

Summary of Evaluation Result from the Participants

Overall, 45.53% were satisfied with the workshop sessions and 40% very satisfied with the logistics arrangement.

Comments and Feedbacks from Workshop Evaluation

1. What did you like the most during this Workshop?

- The close cooperation, exchanges among AAN & government representatives

- Country presentation and sharing resources of AAN delegates

- Created networking with other participants and got a chance to work with government

- Cooperation among participants in contributing ideas

- Friendliness of staff and participants

2. What improvements should be made?

- Process design of the workshop

- Explanation on the project concept and the workshop target

- Engagement of autism expert and public health expert

- Facilitators familiar with autism

3. How did you find the consultant team?

- Average to good

- Very helpful and have expertise in explaining matters requested by participants

Photos

Photo 1: Group photo of participants and guests at the workshop opening

Photo 2: Workshop participants included representatives of the Senior Officials Meeting on Social Wefare and Development (SOMSWD) and ASEAN Autism Network (AAN) from 10 ASEAN countries

Photo 3: Mr. Piroon Laismit, APCD Executive Director, delivers the welcome remarks

Photo 4: Dr. Porametee Vimolsiri, Permanent Secretary of the Ministry of Social Development and Human Security, gives his opening address

Photo 5: Associate Professor Dr. Seow Ta Wee, Workshop Consultant, gives the introduction on Mapping Methodology

Photo 6: Group discussion among workshop participants

Photo 7: Dr. Muhamad Azahar Bin Abas, Workshop Consultant trying to link the importance/ influence matrix on the basis of country drafting

Photo 8: Collecting suggestions and advices to strengthen the proposed matrix

Photo 9: Mr. Shri Malai Hj Abdullah Hj Malai Othman, Founder/President/COO of SMARTER Brunei, shares ideas on Autism Country Profile Template

Photo 10: Presentation from Ms. Mona Magno-Veluz of the Autism Society Philippines

Photo 11: Mr. Watcharapol Chuengcharoen, Chief of APCD Networking and Collaboration, explains the history of AAN

Photo 12: Mr. Taufiq Hidayat of Autism Foundation of Indonesia discusses the program of the 4th AAN Congress and ASEAN Autism Games in Indonesia in October 2018

Photo 13: Workshop participants sampling chocolate products from 60+ Plus Bakery & Cafe and MarkRin Chocolates

Photo 14: Mr. Pongwattana Charoenmayu, Project Manager, delivers the closing remarks.

Inside Back Cover

CD Cover of the Summary Report

Back Cover

Accessible for Persons with disAbilities

Asia-Pacific Development Center on Disability 255 Rajvithi Rd., Rajthevi, Bangkok 10400 Thailand

Tel: +66-(0)-2354-7505 | Fax: +66-(0)-2354-7507

Email: info@apcdfoundation.org | Website: www.apcdfoundation.org

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ASEAN Autism Mapping

ASEAN Secretariat

APCD

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