By Dennis Mombauer
Autism awareness is growing in Sri Lanka, but it is growing slowly and only through the hard work of institutions, initiatives, and dedicated individuals.
A 2009 study in the country found an autism prevalence of 1.07%, meaning that it affects 1 in 93 children between 18 and 24 months. As the study only used a small sample size and global autism numbers are rising, the prevalence today might be higher still: in any case, it affects a very significant percentage of the citizens of Sri Lanka.
This World Autism Awareness Day, hashtags like #AutismAwareness, #AutismAwarenessDay and #AutismAwarenessWeek are abundant on social media, but what do they really mean? How do they translate to the local context of Sri Lanka? And what about #AutismAcceptance, which is much less mentioned but equally important?
Autism Awareness in Sri Lanka
Speech delay is the most common reason parents bring their children to a specialist, but it is far from the only possible manifestation of autism, which would, for instance, include social impairments or repetitive behaviour. As autism intervention is much more effective if it starts early and is done consistently, qualified early screening and awareness are essential to improve the lives of both affected children and their caregivers.
There are currently no population-based screening programmes for autism in Sri Lanka, and autism screening is not a mandatory part of primary health care. Worse still, a sample study at Colombo South Teaching Hospital published in 2017 revealed inadequate knowledge of autism among non-specialist doctors, who could not efficiently diagnose the condition and refer parents to a specialist.
Numerous organisations have been working on or are beginning to work on autism, including autism units at major hospitals, initiatives run by the parents of autistic children, NGOs and civil society organisations. In theory, access to school education is free in Sri Lanka, which values education highly, and available for autistic children just like for everyone else.
In reality, not every autistic child gets in, and even those who do have to struggle with a lack of trained specialists and facilities. Furthermore, while school should be freely available at least in principle, additional intervention such as speech therapy, occupational therapy, and physical therapy is not. The University of Kelaniya introduced a Bachelor’s degree for Speech and Language Therapy in 2008, but the number of graduates is far too small for a country of 20 million people, and almost all of them end up in hospitals or private schools, not the public education system.
Autism in Context
Autism is prevalent around the world, but every country and culture provides a different context and requires different approaches to raise awareness. In Sri Lanka, a mandatory culturally sensitive and specific screening of infants and children cannot be limited to the large hospitals in Colombo and other urban areas, and information by foreign foundations and organisations cannot be given in English alone.
Awareness must be raised across Sri Lanka’s diverse population, be it Sinhalese, Tamil, Muslim, Burgher, or other, across rural areas as well as cities, and regarding male children as well as female ones, whose specific needs are often overlooked because of the much higher prevalence of autism in boys (about four times higher than in girls).
In 2017, the Enable Lanka Foundation published an Autism Toolkit adapted to the Sri Lankan context and translated into Sinhala. Freely available information materials in Sinhala and Tamil are vital to create awareness and overcome social stigma associated with special needs and disabilities. Especially considering the very limited number of available specialists in rural areas, parents and families need to be empowered and build their capacities to meet at least some of their children’s needs.
There is also a disturbing lack of facilities and opportunities for adults with autism. Autism does not go away with the coming of age, and neither do the people affected by it: and safe living facilities and employment opportunities for adults with special needs are almost non-existent in Sri Lanka at the moment.
From Awareness to Acceptance
For all its unquestionable importance, awareness can only be the first step: it is not enough to know autism as a neurological condition and be able to identify its behavioural manifestations. Early diagnosis is essential, and intervention and therapy will help many affected children to improve and lead a more independent life: but it will not rid them of autism like of a disease that can be cured.
Tens or hundreds of thousands of people will be affected by autism from infancy through adulthood and onto old age, and they need to be accepted for what and how they are. Society as a whole—not only parents, not only doctors and teachers—needs to integrate autistic people and respect their differences from the “neurotypical” majority: it needs to listen to their voices, understand their experiences, and create an environment where they can thrive together with everyone else throughout their lives.
Muttiah, Nimisha. (2015). Autism Spectrum Disorders in Sri Lanka–Status quo and future directions. ISSBD Bulletin No. 2, Serial No. 68. (https://www.researchgate.net/publication/309721643_Autism_Spectrum_Disorders_in_Sri_Lanka-_Status_quo_and_future_directions)
Perera H, Wijewardena K, Aluthwelage R. (2009). Screening of 18–24-month-old children for autism in a semi-urban community in Sri Lanka. Journal of Tropical Pediatrics 55(6). (http://dx.doi.org/10.1093/tropej/fmp031)
Rohanachandra, Y.M. et al. (2017). Knowledge about diagnostic features and comorbidities of childhood autism among doctors in a tertiary care hospital. Sri Lanka Journal of Child Health 46(1) (http://doi.org/10.4038/sljch.v46i1.8093)