This article is adapted from the book Monaththuvam.
Over the past decades, autism has emerged as a growing global challenge. Early estimates suggested a prevalence of 0.62% or 62 per 10,000 individuals, yet recent data from the World Health Organisation indicate that the figure may have climbed to around 1%, with the Centres for Disease Control and Prevention reporting rates that exceed 2% in some areas. This rising trend is not confined to high-income countries; it is also evident in low- and middle-income regions, including South Asia. In Sri Lanka, a 2009 study found that approximately 1.07% of children aged 18 to 24 months, roughly one in every 93 children, were diagnosed with autism. Although comprehensive current data are limited, healthcare professionals widely believe that autism rates in Sri Lanka continue to rise.
Northern Sri Lanka, in particular, has faced exceptional healthcare challenges, especially for children with autism. The region’s healthcare infrastructure has been severely disrupted by a brutal thirty-year armed conflict, compounded by natural disasters such as the 2004 tsunami and ongoing political and economic struggles. These compounded crises have left the area with a critical shortage of specialised professionals, including child psychiatrists, developmental paediatricians, clinical psychologists, and allied health professionals, while only a few adult psychiatrists and general paediatricians remain. Although support exists through the special-needs education division of the Department of Education and various private and non-governmental organisations, these services often lack the robust, evidence-based practices necessary to effectively care for children with autism and learning difficulties. As a result, many affected children are excluded from mainstream education, while their families face the daunting task of managing without adequate specialised support.
The journey of Mathavam began with the heartfelt vision of three professionals: Dr. Sivayokan, Dr. Gitanjali Sathiadas, and Dr. Kumanan, and their vision came to fruition with the establishment of Mathavam in 2014. Coinciding with World Autism Awareness Day on April 2, 2014, the centre was inaugurated at a quiet location on Kachcheri Nallur Road by Mr P. Raveendran, the secretary of the Northern Health Ministry, and the Regional Director of Health Services, symbolising the strong commitment of the healthcare sector to addressing the needs of children with autism.
Two young women were appointed on January 1, 2014, and sent for training at the Child and Adolescent Psychiatric Unit of the Christian Medical College in Vellore, India, a renowned regional centre for autism services, though one unfortunately decided to discontinue her career. Despite these remarkable achievements, Mathavam’s early years were marked by significant challenges. In its nascent phase, the centre grappled with a severe shortage of trained personnel. For many months, it provided its services using a single therapist who also served as a centre manager. In addition to the single, trained therapist, a part-time therapy assistant and a helper were employed to support the centre’s activities. Later, two health department staff joined Mathavam initially on a part-time basis and later as full-time. Medical reviews and consultancy were provided by a consultant paediatrician and a consultant psychiatrist.
Mathavam quickly became a vital support hub for families and children affected by autism. The centre soon garnered recognition and support from both the public and government sectors. In January 2015, Mathavam was officially incorporated into the government health department, a milestone that ensured greater support and sustainability through strengthened partnerships.
During a visit back to their homeland, two dedicated doctors from Jaffna, Dr Kaveri and Dr Sumi, who had moved to the United States, joined the initiative and started supporting the efforts of Mathavam. Drawing on their professional expertise and deep connections to the community, they inspired the parents and committed to providing continuous support and guidance.
Despite these initial efforts, the centre experienced a decline in its function by early 2017. The initial model overly relied on parents to implement goal-orientated activities based on the initial assessment using the Childhood Autism Rating Scale (CARS), leading to low staff morale, unmet expectations of the parents, the inexperience of the therapists and inadequate supervision.
By September 2017, a rejuvenation took place. Recognising the need for change, the advisory committee took decisive actions. They increased the number of specialised staff, implemented rigorous documentation processes, and held regular meetings to address emerging issues. The centre was relocated to a more accessible location, Sivarajah Avenue on Palaly Road, offering improved accessibility and more spacious facilities. International experts were invited to conduct training sessions. The introduction of ABA marked a significant breakthrough, ushering in an era of hands-on therapeutic involvement and structured, evidence-based care practices.
That same year, the launch of an autism policy and the organisation of the first autism awareness programme underscored the growing recognition of autism-related challenges within the community. The following years saw further expansion of Mathavam’s outreach, including the launch of an official website in 2018 and the integration of advanced therapeutic practices, such as Applied Behaviour Analysis (ABA), bolstered by international training and expert guidance.
Named “Mathavam”, a Tamil term meaning “a great penance”, the centre was conceived to address the pressing need for specialised autism care in a resource-limited setting. Eschewing the conventional public-private partnership model common in high-income countries, Mathavam adopted a public NGO/charity sector partnership model. This approach brought together the Regional Directorate of Health Services (RDHS), the Faculty of Medicine at the University of Jaffna (UOJ), the Mental Health Society (MHS) as a local charity, the International Medical Health Organisation (IMHO) from the United States, and the Manitha Neyam Trust (MNT) from the United Kingdom. The involvement of international partners was critical in sustaining funding and leveraging diaspora resources amidst an uncertain national economic environment.
Mathavam has launched a series of innovative awareness programmes to promote its services and increase community engagement. Large boards bearing the centre’s logo and key information have been strategically placed at prominent hotels and bustling railway stations throughout the region, capturing the attention of travellers and locals alike. Additionally, a memorable balloon-flying ceremony was organised at the Teaching Hospital in Jaffna, creating a visually striking event that symbolised hope and the promise of change. These initiatives not only enhanced the centre’s visibility but also fostered a sense of community solidarity and support for the advancement of autism care.
From its inception in April 2014 to March 2025, Mathavam has provided care to more than 800 children, including 500-plus children with a formal autism diagnosis. Today, the centre operates at full capacity, staffed by a committed team that includes a medical officer trained in psychiatry and ABA, four specialised therapists, and four supporting staff members. Mathavam also leverages part-time and community-based resources, with parents acting as co-therapists and local volunteers contributing to its mission. Continuous staff training, including virtual sessions and peer group supervision, ensures that the team remains updated on best practices.
Mathavam’s influence extends far beyond direct care. As autism awareness grew, the centre played a pivotal role in shaping regional policy, leading to the draughting of a comprehensive policy for autism management in the Northern Province. Launched by the provincial chief minister, this policy was the result of collaborative efforts across the health, education, and social service sectors and serves as a foundational document that could inform a national autism policy. It also transformed into a centre that fosters the culture of training and research.
Mathavam’s transformative journey demonstrates how dedication, collaboration, and community-driven approaches can overcome the challenges of providing specialised care in low-resource settings, ultimately laying the groundwork for a more inclusive and supportive future.
Dr. Viduni Basnayake
Demonstrator
Department of Psychiatry , University of Jaffna
