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ontrary to popular belief, autism does not only affect rich people in the cities, it also touches the lives of the poor living in remote areas, says child psychiatrist Melly Budhiman.

However, despite her decades of experience, Melly does not have the data to back this up.

There are also no accurate data to validate the estimate that around 6 million people with autism live in ASEAN, which has a population of 625 million.

To back this up, the ASEAN Secretariat, in cooperation with the Asia-Pacific Development Center on Disability (APCD) and the ASEAN Autism Network (AAN) launched the first autism mapping project in the region on Monday.

Melly, who is also the chairwoman and founder of the Indonesian Autism Foundation, said some parents from Jayapura and Nabire, Papua, as well as Fakfak, West Papua, had brought their children to Jakarta in the hope that they could be cured from autism.

“I believe almost all inhabited islands have children with some spectrum of autism,” she said on the sidelines of the launch.

The project is funded by the Japan ASEAN Integration Fund (JAIF) to the tune of US$246,179 and is set to be completed by 2020. The results would be used as a basis for developing laws and policies to protect the rights and promote the empowerment of people with autism in ASEAN.

There is no definite data on the prevalence of autism in ASEAN, especially in Indonesia.

The Women’s Empowerment and Child Protection Ministry refers to data from the Incidence and Prevalence of ASD (Autism Spectrum Disorder), which estimates that there are 2.4 million people with autism spectrum in Indonesia, with 500 new cases being reported every year.

ASEAN Secretary-General Lim Jock Hoi said since autism was a spectrum, it affected people differently. “Unfortunately, autism is a disability that is difficult to detect due to a lack of support and services and capacity for screening and early detection.

“Such data is critical in order to collate evidence based on social intervention that can reduce the difficulties faced by people with autism.”

Japanese ambassador to ASEAN Kazuo Sunaga said the focus of cooperation between Japan and ASEAN should not only be on the economic aspect, but social and cultural aspects as well.

“All people, including the physically challenged, should not be left behind.”

Tej Bunnag, chairman of APCD which is the project’s implementing agency, said his organization had held a workshop to decide on the methodology of the project.

“We have to have a proper methodology in which all of the ASEAN countries use the same template and questions.

“Now, we have got the methodology, then we proceed to the actual work, so we will be working closely with the ASEAN Secretariat and AAN, who’s very active in every ASEAN countries. So we work with them.”

The deputy secretary-general of ASEAN for ASEAN Socio-Cultural Community (ASCC), Vongthep Arthakaivalvatee, said besides the implementing agencies, the AAN’s national chapters would be at the forefront of gathering the data.

However, Melly, who is also one of the AAN founders, said a two-year period would be a challenge for large countries, especially Indonesia, which had the largest population in ASEAN.

She added that her organization had previously tried to work with the Indonesian government to identify the prevalence of autism in Indonesia, but it was constrained by the lack of funding and human resources.

“For Indonesia with such a huge population spread out over 17,000 islands, it is going to be quite a challenge. We also need a uniformed questionnaire so that the data can be valid.”