Autism Management in Indonesia Hindered by Data Issues: BRIN Advocates Local-Based Interventions

World Autism Awareness Day on 2 April serves as a crucial moment to spotlight the major challenges in managing autism in Indonesia. One fundamental issue that remains unresolved is the absence of accurate and integrated national data.

A researcher from the National Research and Innovation Agency (BRIN), Rozana Ika Agustiya, revealed that the current prevalence figures for autism in Indonesia are merely estimates. There has yet to be a comprehensive national survey capable of mapping the real conditions on the ground.

“If we know the exact numbers and distribution, we can plan service needs, expert personnel, and budget allocation appropriately. Without solid data, the policies taken risk being off-target,” Ika stated in her official remarks on Wednesday (1/4).

The scarcity of national data correlates directly with field-level obstacles. Ika identified several main challenges faced by families with autistic children, including:

This condition imposes a double burden on families, both in terms of time and economics. Although some services are covered by BPJS Kesehatan, operational costs such as transportation and special accompaniment remain self-funded burdens.

BRIN advocates for a paradigm shift in autism management by prioritising locally-based intervention models. According to Ika, approaches from advanced countries cannot be adopted wholesale without adaptation to Indonesia’s cultural context and limitations in professional manpower.

“Family and community-based approaches, as well as the use of technology like early detection applications, are relevant solutions to expand service reach in the country,” she explained.

Autism management does not rely solely on medical aspects. Given that most of a child’s time is spent at home, parents play a vital role as co-therapists in their child’s development.

In addition to technical and medical obstacles, social stigma remains a major barrier. Children with autism are often labelled as naughty, while parents are seen as failing in upbringing. This social pressure frequently causes families to withdraw from their surroundings.

Ika emphasised that the goal of interventions is not to “cure” or standardise the child, but to help them achieve their best potential. “Children with autism are not deficient children; they simply develop differently. Every child has unique potential that needs to be recognised and nurtured,” she concluded.

Through cross-sectoral data integration—from health, education, to social services—the government is expected to formulate more comprehensive and sustainable policies for the future of children on the autism spectrum in Indonesia.