The demand for support for children with ASD is growing, but a lack of data and research means services remain woefully inadequate
Sherine Hassan
The World Health Organisation (WHO) reports that approximately one in 160 children worldwide are diagnosed with Autism Spectrum Disorder (ASD). For the past 50 years, the prevalence of ASD has continued to rise. Until now, however, Indonesia – the fourth most populated country – lacks accurate data on the number of children with ASD in Indonesia. Currently, we can only infer from the worldwide data. The WHO also reports that mental health care services in developing countries are allocated less than one per cent of the total health budget, forcing those in need of mental health services to rely more on private and non-government services. Similarly, in Indonesia only around one per cent of health expenditure is dedicated to mental health.
In 2011 Indonesia ratified the UN Convention on the Rights of People with Disabilities and in 2016 the government introduced legislation (Article 31 of Law 8/2016) guaranteeing equal rights and opportunities for people with disabilities, including those with mental disorders like ASD. The current level of resourcing combined with a lack of data on the prevalence of ASD means that government services and resources essential for treatment and support remains woefully inadequate.
The current level of support for ASD in Indonesia has consequences for both mental health practitioners and parents. Inevitably, this impacts on the futures of children with ASD.
Challenges faced by practitioners
In the absence of government support, families and practitioners have moved to establish their own autism centres and foundations. Yayasan Autisma Indonesia was established in 1997 by Dr Melly Budhiman. Her motivation to create an autism foundation stemmed from her experience as a psychologist listening to concerns of parents with autistic children in the absence of treatments in Indonesia. The centre provides education, training and sharing sessions to support parents of children with autism. According to their data, there are currently 132 autism centres located in 27 cities. While these numbers are not insignificant, this leaves 483 cities in Indonesia without services.
Zulfikar Alimuddin is the founder of Yayasan Cinta Harapan Indonesia (YCHI). YCHI has 13 centres spread across Indonesia providing free services for children with ASD. Zulfikar is gravely concerned about the shortage of qualified practitioners due to the lack of training programs and education opportunities.
YCHI uses Applied Behaviour Analysis (ABA) therapy, which requires practitioners to be trained and supervised by registered therapists from the Board of Certified Behaviour Analysts. Due to the intensive nature of the care required in ABA therapy, the resources and training available in Indonesia are insufficient to deal with the present levels of ASD cases – and demand continues to rise. As a consequence, most of the practitioners in these centres are self-taught.
‘None of us have backgrounds in ASD, we are psychology graduates who started off as interns in the centre and grew passion out of it. We search for international workshops or seminars to understand the therapy on our own because the resources are unavailable here’, explained Pelita, a practitioner at YCHI.
During the pandemic, practical workshops have been cancelled putting practitioners in an even more difficult situation. Not only are they unable to conduct directive treatments but they also lack the resources necessary for maximising home-based therapies.
Burnout is common among health care professionals but in the case of ASD practitioners in Indonesia it seems to be amplified. ‘The turnover rate for therapists in the centre is high because some do not have the patience to endure the physical and mental challenges of treating ASD children. The children communicate through physical expression, and when they get frustrated they can get physically aggressive,’ stated Zulfikar.
While there are now a range of treatment therapies for ASD, the resources or means for practitioners to specialise in a therapy are not available in Indonesia. This impacts on the effectiveness of therapy where reaching a behavioural goal can take longer to achieve due to the limited skills and knowledge of practitioners.
The lack of resources and training for practitioners seems to be the core concern in ASD therapies. Practitioners are not provided with the means for growth and their perseverance in their profession simply stems from their passion and genuine care for children with autism. The limited prospects for thriving as an ASD practitioner make the profession less appealing, which, in turn, is a significant contributor to the lack of practitioners.
Challenges faced by parents
Autism centres are not available in most cities, forcing some parents to commute long distances to provide their children with appropriate treatment. ‘Some families who can afford expensive treatments consult with international experts,’ mentioned Zulfikar. However, this is not sustainable and not even an option for most families.
‘Most parents are not well-informed about ASD so they do not know how to approach their children, and this contributes to the frustration they face as a parent’ he added. In many cases the lack of support and education for parents of children with ASD causes them to experience depression.
Emotional exhaustion is common among parents of ASD children. Lina’s child is now 13 years old and is able to access occasional therapies at her home in South Jakarta. ‘Because there is a communication barrier where she is unable to verbally express herself, sometimes I feel hopeless, especially when she uses her physical strength to express anger. Being patient also has its limit, you eventually get tired’ she told me. Lina relies on a network for parents of children with ASD as a support system. This community provides resources and sessions where parents can share their experiences, which seems to help parents in the process of rearing their child.
For most parents, like Lina, whose children are not able to receive private therapies there is no other choice but to put their children in state special schools (Sekolah Luar Biasa). However, finding a school suitable for their child is also a gamble. Dewi, is from Sidoarjo in East Java and her son, Echa, has ASD. Over the past nine years he has moved school multiple times and his condition has continued to worsen.
Echa’s condition was more severe than his friends, and he was asked to leave the school because his behaviours were deemed to have a potentially negative impact on the development of the other students. This occurred at several schools, accounting for the multiple changes. The constant rejections from the schools, which were ultimately due to the lack of manpower available, were devastating for Dewi and her family. ‘Why does it seem like it is my child’s fault?’ she asked.
The absence of support left her depressed and feeling hopeless until she discovered a supportive local ASD community with many parents sharing similar experiences. For parents like Dewi, where school does not seem to be an option for their child, the community itself provides the support to create a suitable learning environment at home.
There are very few government resources for parents to receive help or support in treating their child. Many parents rely on networks of ASD community groups, connected via social media, where they share advice. These provide some indirect support and psychological comfort for parents; however, progress with behavioural and communication performance in their children remains limited.
An urgent need
The dignified care of autistic children requires urgent national attention. Given the current trend, it appears inevitable that the number of children diagnosed with ASD will continue to grow. If training, education and qualifications for ASD practitioners and services for families remain unavailable, the future for children with ASD will continue to be uncertain.
For families of children with ASD living in more remote areas, without any access to services or community support, the situation is even more dire.
For many years ASD communities and foundations have advocated for educational resources and support for children with ASD. As much as public awareness about ASD has grown and charity contributions are made, on their own the efforts of the ASD community are not enough. This does not seem to capture the government’s attention.
How can we as Indonesians say we are committed to providing equal opportunities for all and yet fail to provide support for some of the most vulnerable among us?
With the many challenges faced by practitioners and parents, the developmental progress of autistic children is hindered. Overtime, this delay will limit the opportunities available for these children in society.
Sherine Hassan (sherinekamila@gmail.com) is a research assistant in the faculty of Psychology at Universitas Indonesia and a master’s candidate in Applied Behavior Analysis at Monash University.
From the Archive
Mental health in Indonesia, Edition 141 (Jul-Sep 2020)