By Lucky Agung Pratama
A Brief Description of Autism Care and Management in Indonesia
Among developmental disorders, Autism Spectrum Disorder (ASD) has unique aspects. People with ASD exhibit differences in their way of learning and have greater challenges with emotional and behavioral control, and communicating with others. According to the Centers for Disease Control and Prevention (CDC), we still do not know what causes this condition. Multiple studies suggest there are many factors that make a child more likely to have ASD; so far, there is no consensus about prevention. The term ASD itself is used to refer to a wide range of conditions, from someone who is highly functional to severely challenged.
Autism is not a disease, so there is no “correct” way to cure it. A person with ASD will most likely face a lifetime challenge socializing with the others. Therefore, it is important for parents to have their children diagnosed as soon as they show signs of autism. In the United States, health providers usually recommend several specialized therapies when a child is diagnosed with autism. These options can be speech therapy, occupational therapy, or social and behavioral therapy.
Children with ASD are guaranteed access to equal education in the United States; school districts may provide specialized teacher assistants, depending on the needs of the student. The support goes a great way in preparing the child to be self-sufficient and able to work once they reach adulthood.
While not perfect, autism care and management in the United States receives government support and skilled practitioners have established a proficient system. For other countries, these same foundations are just being laid. Indonesia, for example, is still in the early days of establishing nationwide support.
Kunthi Hardi, who received her Master’s Degree in Applied Behavior Analysis from UW’s Department of Education in 2018, recently co-founded Anak Istimewa Indonesia Foundation (YASAINDO). This nonprofit organization aims to advocate for children with special needs and support inclusive education in Indonesia. One of the organization’s programs, BehaviorPals, offers assessment, scientific intervention, and training for children diagnosed with autism. As one of the very few Board-Certified Behavioral Analysts in Indonesia, Kunthi works collaboratively with parents to determine what interventions are needed and to plan how to achieve them.
Autism Support in Indonesia
As someone who had experience working with children with special needs in the United States, Kunthi discovered finding resources and caring for children with ASD is significantly more challenging in Indonesia. In our interview, Kunthi described some of the difficulties.
First, Indonesian parents are faced with challenges such as finding a reliable therapist or a program. There is no clear pathway for parents who are searching for information; most rely on other parents whose children have ASD. In locations where specialized programs exist, most are not covered by health insurance policies so parents likely will have to pay out of pocket.
Access to equal education
A recent initiative in Jakarta provides the opportunity for special needs students to participate in the same educational institutions as other children. It is also delivering trainings and informational sessions about best practices for teaching children with special needs. This effort is still in its infancy and was introduced by the local, not federal, government. According to Kunthi, the trainings are not sufficiently comprehensive to address all the challenges faced by both the educational institutions trying to adopt accommodations and the children themselves. These trainings simply don’t have the capacity to fulfill the needs for educational providers in Jakarta.
Thankfully, educational institutions have begun to show awareness towards this issue. Several schools began providing break rooms to accommodate students with different learning requirements. Schools are also providing psychologists and teacher assistants for children with special needs.
Great Interest in Special Education, but Lacking in Programmatic Support
According to Kunthi, there is great interest in learning more about best practices from educators and practitioners. The problem is finding institutions of higher education that offer degrees or certificates for fields such as special education providers or occupational therapists. As a result, it is difficult to find someone with proper experience and training in working with special needs children. Often parents are left relatively unsatisfied with the quality of service provided by the therapist.
Challenges for Parents outside of Java
Outside of the greater Jakarta area, one is unlikely to find the same level of accommodation. Parents from outer islands would have to travel to large cities, or even move to Java, in order for their children to receive proper therapy and education. In some extreme cases, parents have consulted with overseas experts, but of course that is not sustainable nor available to most.
Parents also face challenges from local communities. Autism isn’t a familiar condition for most people in Indonesia and some dismiss the concept. Although they might know the term, some wrongly perceive ASD children as being mentally retarded and incapable of learning. Worse, some people blame the parents for challenges a child might have with emotional control.
To cope with this, families have established organizations and schools on their own. This allows them to provide self-help and communal support for themselves and other families, even with lack of support from an experienced therapist. These small regional initiatives are decentralized, but they often keep in touch with each other.
Indonesia is a big country with a lot of challenges, so it is understandable that the government might not come up with comprehensive solutions in the immediate future. While families and educational institutions are beginning to receive sporadic support, community awareness about autism and the educational needs of all children is also critical.