Deka Kurniawan is creating local services that enable autistic children from poor families to access therapeutic and developmental services. These centers are the first of their kind in Indonesia, providing holistic services to both autistic children and their families.
The New Idea
Deka’s goal is to improve Indonesia’s capacity to serve autistic children and their families. This means making affordable services widely available. The first step is to define and demonstrate what can be achieved. By directly operating Rumah Autis centers, and helping others to replicate this work, Deka is beginning to build the field. But his vision also requires a longer-term effort to advocate for the government to take up the issue, by giving existing local state-run daycare centers tools for supporting autistic children and their families.
Deka managed to recruit his wife’s colleague who worked at the private autism center to work pro bono. Her first patients were the children who had been rejected from that center. When he met these children in their homes, he noticed how hyperactive they were and how much damage had been done to the house since they had no outlet to relieve their hyperactivity.
Deka realized the importance of an actual physical center, where children could receive treatment, families could be trained to deal with their behavior, and there was space for play that was tailored to the children's needs. Since there were no centers for poor families, Deka accepted the lack of infrastructure as an opportunity to define the needs of the field and create the space for it.
Deka has created a model for an autism center, Rumah Autis, which is independently operated and easily replicated. He has set up and continues to run a number of centers, and helps others to do the same. Deka also understands the importance of employing professionals and drawing from existing expertise. He has established seven Rumah Autis centers around Indonesia, with another two centers functioning independently. As he sees his centers being replicated around Indonesia, and his understanding of autism grows, he realized the unique skill set that autistic children are equipped with. Deka is setting up a number of businesses where autistic individuals can be employed, further contributing to their independence and likelihood of living more complete, fulfilling lives.
In Indonesia, it still remains unclear how many people are affected by autism. Autism is a complex brain disorder that appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between two and three years of age. The disorder affects motor coordination and attention and also attributes to social interaction and emotional behavior disorder.
Dr. Melly Budiman, chief of the Indonesian Autism Foundation and a leading child psychiatrist, identifies 1 out of 500 children is on the autism spectrum—a tenfold increase in prevalence over the last ten years. Since autism can be linked and confused with so many other brain disorders and diagnosis is dependent on a unique combination of an individual’s autism gene risk and environmental factors, there is no precise statistic on the number of children who are affected by autism, yet the medical field predicts that there are about 7,000 autistic children in Indonesia.
Each child or adult with autism is unique and therefore, each autism treatment plan should be tailored to address specific needs. Treatment can involve medicine, behavioral therapy, or both. Many children with autism suffer from additional medical conditions such as sleep disturbance, seizures, and gastrointestinal distress. Since behavioral therapy can include intensive training, parents should be an integral part of the treatment and therapy process. In poor families, treatment of any kind is simply too costly. There are currently no subsidized programs to diagnose and treat children with autism from lower socioeconomic backgrounds in Indonesia, often leaving those families who do opt to treat their children emptied of their economic resources. Psychologically, there is a stigma attached to children who suffer from disabilities due to societal pressures, causing parents and families to neglect their child’s disability, stunting their ability to lead an independent life.
In Indonesia, autism research and service is a commercial field. Therapists working in this space require a direct payment from the patient’s family. This requirement makes services inaccessible to poor families, even though they do exist. Additionally, the government does not have policy in place for providing these services to those that cannot afford them, nor do they have the infrastructure in place to “house” the issue, contributing to slow decision-making and a lack of voice in the field. Without an institution within the government, there is no mechanism in place to embed autism awareness and support in the education, health, and special needs fields, which often causes autism to be placed in the same category as other complex disorders. Compared to Western countries such as Australia, where the government wholly takes responsibility to address needs, there are also no drivers for public awareness and outreach. What little outreach that does take place comes only from private groups, not always ensuring that the information, support, and services reach those children who need it most.
Deka’s plan to treat autism in Indonesia is a two-pronged strategy: (i) free, individualized treatment at his centers, and (ii) national advocacy for autism awareness, education, and treatment. Deka has a large-scale vision for autism treatment and education in Indonesia, and he has pursued these goals at both the local and national level.
Deka’s Rumah Autis centers have evolved and today, they are uniquely utilizing highly qualified volunteers to leverage their resources effectively and provide treatment to meet local needs. In December of 2004, Deka started the first Rumah Autis center in a rented house where all resources were donated and therapists gave their services pro bono. Today, Deka’s centers have expanded to seven all around Indonesia. Therapists now initially are screened for suitability to treat autistic children and gladly work on a volunteer basis. Those that contribute a significant amount of their time and commit to working for the center are paid for their services.
Besides payment for therapists, Deka also recruits volunteers to staff the centers with management, teachers, and medical professionals. Rumah Autis’ staff has grown exponentially to encompass 75 volunteers, consisting of 20 managerial staff, 35 therapists, and 20 teachers. This cadre of volunteers has been able to effectively serve 230 autistic children in a holistic manner, providing services such as therapy, special needs education, life skills training, and boarding. Deka’s spread strategy is based on capacity and demand of local needs. Deka also realizes the value of investing in his volunteer staff. He has created a training component to his centers to strengthen the abilities and passion of his volunteers that work with autistic children. His long-term hope is that more volunteers will be equipped both with technical and empathetic skills for similar institutions. Through his capacity building program, he has created Rumah Autis Sinergi, where he has partnered with organizations that want to replicate his work and can provide funding but need his technical and managerial training of staff. In this way, Deka has been able to and continues to spread his model throughout Indonesia.
Deka and his organization work together with the Communication Forum for Special Needs Children and Parents, as well as the Autism Foundation of Indonesia to jointly campaign and lobby the government to provide services and funding for special needs children and families. While the association shares the same vision, Rumah Autis stands apart as the flagship program that is leading by doing. His method has already provoked action from the government. The Department of Social Services created a program for special needs children and supports Rumah Autis in the form of a scholarship program. Deka is still advocating the government to provide training to local health centers to better diagnose and treat autism. One major hindrance Deka sees in his work is the continual debate between the social, health, and educational departments within the government about where autism support and services should be housed. Deka continues to work with the government in order to create a statutory department under which autistic children and their families can command resources.
Long-term, Deka is working with kindergarten and early childhood education centers as well as Community Health centers to work with prenatal mothers and infants. He wants to integrate these institutions to serve as the frontline for early detection of autism in infants and children. In addition, Deka has either created or partnered with businesses around his centers to employ autistic individuals to perform duties that maximize their potential. Whether he is employing autistic people for his laundry business or a restaurant business, Deka is continually providing opportunities to benefit both the employers and the autistic individuals themselves.
To aggregate all the findings Deka has discovered through his work, Rumah Autis has produced and printed a simple booklet that contains information about the treatment of children with autism. To date, Rumah Autis has distributed 20,000 booklets, and the Ministry of Social Services is interested in replicating the booklet.
Deka was born in Jakarta into a big and religious family where he was the second of seven siblings. His father was a factory worker and his mother a homemaker. Deka was greatly influenced by his mother, an incredibly empathetic person who often played a large role in the community by helping those who were struggling. His father grew up in a poor and illiterate family where he faced many struggles throughout his life. As a result, he instilled in Deka the importance of taking ownership of his life, and not letting obstacles interfere with his goals. As the second oldest sibling, Deka faced a great amount of responsibility in the home, helping his brothers and sisters prepare for school, bathing and feeding them, and driving them to school on his bicycle. It was through this responsibility that Deka remained focused on serving as a great role model for them. Through the power of love, he taught his brothers and sisters to make good decisions throughout their lives.
As a student, Deka was actively involved in student leadership and religious activities, which he credits as shaping his character. As a journalist working for the student newspaper, Deka found that he had a great outlet for developing his ideas and expressing them articulately in a way that moved people to react. In one of his classes, he noticed that a lot of students were struggling. Deka managed to convince the best performing students to share their notes, which Deka meticulously hand-copied and redistributed to the poor-performing students. He managed to get those students up to speed with the notes so that they could take their final exams. When Deka first approached the better students in class about his idea, they were hesitant about helping since the classroom environment was very competitive. Deka appealed to their response by pointing out that if all the students could take their final exams, it would make their entire school appear as a better performing school, and that if they allowed the other students to fail, the school was also failing. Deka was willing to do the work behind the scenes and was able to organize the project effectively through persuasion.
Deka again began affecting change through persuasion in 2004 after a conversation with his wife. She told him about a colleague that worked in an autistic center where she witnessed a child and his family seek out therapy but ultimately was refused treatment due to their inability to pay. At the time, Deka had no knowledge about autism, yet he was ignited with the injustice of this child’s situation. He questioned how children were able to function without proper care and therapy. Deka’s response was to create Rumah Autis, where one of his first steps was to use the autism center’s mailing list (where they had initially rejected the child), to request donations of toys and resources that autistic children in rich families didn’t need or want anymore. For Deka, it has been these kinds of creative solutions that have allowed him to continue to provide local services so that every child with autism has the opportunity to access quality treatment in Indonesia.