by Teacher Ces Sicam, Vice President, Autism Society Philippines
 |
| Cecile Sicam with foreign officers |
The 2nd AAN Congress in Brunei in April 2013 was an eye-opening experience for me. I learned about the status and activities of each country as each delegation gave a report during the formal meetings. But it was during meal times, breaks and field trips that we had the opportunity to share stories in more informal and personal level. Through these interactions I realized how unique each country’s situation is but that we are all bound by the same challenges autism brings.
Our host, SMARTER Brunei, led by its tireless President Malai Hj Abdullah bin Hj Malai Othman, is a center-based family support organization. They have 3 centers exclusively for Individuals with Autism (IWAs) – one for early intervention, another for IWAs aged 6-up and the Brunei Autism Center for Adults (BACA) for occupational training. Almost all of the staff of these centers are Filipinos – from their teachers, therapists, even to their drivers. Their centers are practically tuition-free as Mr. Malai takes care of raising funds to sustain their operations. In 2001 he started bringing the cause of autism to the consciousness of Brunei, almost single handedly, by running a marathon across the country. He eventually got the attention and support of the royal family. And through the years he has been holding musical shows, fun runs and other big projects to sustain awareness and support for their programs. His advice: show you have a good product and support will come. They are encouraging families to put up businesses that their children can work in.
Thailand fielded the biggest delegation to the conference – all 115 of them, including no less than their Secretary of Education. The Association of Parents of Thai Persons with Autism (AU-Thai) is a recognized public organization since 1995 and, under the leadership of Mr. Chusak Janthayanond, has grown to more than 50 network-organizations in as many provinces. It is interesting to note that the incident rate of autism in Thailand is approximately 2-6 per 1,000 people – much lower than the incident rate in the US which we have applied to the Philippine population. It is estimated that there are more than 200,000 individuals with autism in Thailand (population 69.52 million). Autism awareness and support may perhaps been boosted by the fact that the King had a grandson who was known to have autism. (Unfortunately, he died in the tsunami of 2006.) Because of the support of their monarchy and government, Thailand can boast of comprehensive programs for IWAs, including Thai Elephant-assisted therapy. Thailand’s monarchy not only shouldered the expenses the AU-Thai delegation but also paid for the airfare of delegates from Myanmar, Cambodia and Laos. This is early evidence of intra-regional support and cooperation. Very heartwarming.
Malaysia also has a strong organization for autism. The National Autism Society Malaysia (NASOM) established their One-Stop Center for Autism with the support of private business groups such as the Kiwanis. In 2005 NASOM started, managed and financed a pilot programme to integrate children into mainstream schools. Because of the progress shown by students, the model was adopted by the Ministry of Education. They even have residential facilities/group homes for adults.
Indonesia was represented by Dyah Puspitah A. Abdoellah, co-founder and Secretary of the Indonesian Autism Foundation (Yayasan Autisma Indonesia/YAI), a psychologist and mother of a 22 year-old IWA. Dyah also runs Mandiga, an educational center for IWAs. YAI was founded by a group of parents and medical professionals and currently has about 1500 members. Indonesia is the most spread-out and populous country in the ASEAN (their population is about 238 million) and establishing strong links with the families and centers in the different parts of the country has been challenging. Like us, they also dream of establishing an “autism center” that can function as a diagnostic, registration, information, therapy and education center.
The Association for Autism (AfA) of Laos, was represented by its Vice President Thongkham Vongsay who is married to Michael Shultze, a German national, an ADB consultant on SMEs. He recounts that they did not have specialized medical personnel to check and diagnose children with developmental disabilities in Laos. No experts in special education are trained to deal with the disorder and help those persons to live a joyful and meaningful life, to support their families in order to integrate their members with special needs. Autism is virtually unknown in Laos. They had to go to Thailand to get confirmation about his son’s condition. Together with other parents, they put up the Vientiane Autism Center – the only educational institution for IWAs in Laos. Right now they are advocating for recognition and inclusion of autism as a disability in order to get government support.
Cambodia was represented by a very demure grandmother who not only heads the Parents Association for Children with Intellectual Disabilities (PACHID) but also runs a day care center with 20 children with intellectual disabilities in Phnom Penh. Ms. Svay Simorn could not speak English and was accompanied by one of their members, a father, an engineer who works for the government, who translated for her. As in Laos, there are no other institutions for persons with autism and PACHID is advocating for access to education and more support for their center.
One of the youngest members of the AAN is the Myanmar Autism Association (MAA). Just like Laos and Cambodia, the MAA is campaigning for more public awareness and understanding of autism, training of parents and teachers. I could not help but think of parellisms with our situation.
The Hanoi Club for Families of Children with Autism is a parent support group in Vietnam which is working for recognition. Its representative Ms. Hoang Ngoc Bich (pronounced “Bik”) works as a trainor/facilitator in several multinational companies. But she also experienced being her son’s teacher/therapist/mother as there were no programs that were available for her son. Now her son is a teenager studying in a mainstream school.
Considering that ASP was born in 1989, we’re one of, if not the oldest parent support organization for families of PWAs in South East Asia. In some areas, we have come a long way in raising awareness and support for autism. But we still lag behind in terms of providing training and services for adult IWAs.
Meeting the warm bodies and the faces of autism in the ASEAN countries has definitely been enriching. Hearing parents from other countries echo the same problems we face e.g. limited access to appropriate diagnosis and intervention, adult services and accommodations; data gathering, monitoring; organizational sustainability, funding/public support, and public understanding gave me the sense that “we are not alone” - the affinity we get from attending family support group meetings – only on an organizational level. Hearing what others are doing/have done to overcome these challenges is inspiring and reenergizing – tuloy ang laban!
Posted in: 
0 comments:
Post a Comment