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Autism awareness in SL: Marred by selfish parents, vile misconceptions, late diagnosis, inadequate resources, non-specific social security

07 Apr 2021

 By Sumudu Chamara and Savaira Sammoon   World Autism Awareness Day has, as all other days dedicated to one thing or the other, come and gone without much ado by way of anything, let alone the commercial prospects that mark Saint Valentine on Valentine’s Day or social justice warriors twittering away on iPads, seething in righteous anger and venting their well-oiled cappuccino spleen on the woeful plight of the country’s flora whilst extolling the virtues of tree hugging on World Environment Day. In Sri Lanka, there is no love lost on what is deemed “not ‘normal’/sub-‘normal’/ab-‘normal’”. Be that as it may, in light of the acknowledgement of a day on autism and other learning disabilities and intellectual and developmental disorders, oft spoken of in hushed tones of feigned pity and polite contempt, the time is nigh to acknowledge an uglier reality: That is that “selfish” parents of so-called “normal” children are one of the many factors standing in the way of the future of the education of autistic children in Sri Lanka. When it comes to forces against children, Sri Lankan parents are rarely thought of as one of nature’s foes. Instead, they are mostly seen as overprotective, loving, and doting to the point of default. But it would seem autistic children in Sri Lanka have an unlikely enemy. Their nemesis is in the form of a certain type of parent – specifically, the parents of so-called “normal” children – and in particular, a less-desired, albeit natural, flipside of the myriad manifestations of parental love they amply exhibit: “Selfishness”; in this case, wanting only the very best of everything for their children, ignorant of other cherished universal values of humanness, empathy, and sympathy towards those deemed by them (these parents) to have been anointed and marked by “sin”, it was revealed. But more about that later. Gone are the days when disability (referred also to, among other terminology, as being differently-abled or living with special needs) was seen as a weakness, and the world now considers diversity including disability as a strength. Disability is also no longer a thing to be ashamed of, and it does not necessarily mean that a person living with a disability is need of others’ assistance. Most importantly, it is not always physical. Any of us may have to live with a disability, either temporarily or permanently, at some point in our life.  World Autism Awareness Day, declared by the United Nations (UN) General Assembly in 2008, fell on 2 April. According to the World Health Organisation (WHO), autism spectrum disorders (ASD) are a diverse group of conditions, and characteristics of autism may be detected in early childhood, but autism is often not diagnosed until much later. About one in 270 people has an ASD, and the abilities and needs of people with autism vary and can evolve over time. Evidence-based psychosocial interventions can improve communication and social skills, with a positive impact on the wellbeing and quality of life of people with autism and also their caregivers. Today’s Spotlight focuses on Sri Lanka’s present situation concerning autism and what steps are yet to be taken to make the available services more effective.   Awareness    Daddys Lanka Autism Centre Chairman Dr. Sudath Damsinghe told The Morning that Sri Lanka has adequate awareness about autism, adding that there are, however, shortcomings when it comes to steps that need to be taken after diagnosis. Merrill J. Fernando (MJF) Charitable Foundation Rehabilitation Services Head Dr. Gopi Kitnasamy, however, expressed different sentiments regarding the level of awareness Sri Lanka has about autism. He opined that to Sri Lanka, autism is a rather new topic, and that there is still a very long way for Sri Lanka to go to address it effectively. When contacted by The Morning, he noted that even though there is a certain level of awareness about autism in urban areas, when it comes to rural areas, there is a lack of awareness. He said that not only about autism, when it comes to other similar health conditions such as cerebral palsy, the level of awareness is not sufficient.  “These are various conditions that fall under development disorders. When there is a delay in developmental milestones, early identification and awareness are vital in order to ensure early intervention, and that is what other countries do better than Sri Lanka,” Dr. Kitnasamy noted.  When queried as to whether Sri Lanka’s existing interventions to deal with autism, especially as far as raising awareness is concerned, were sufficient, he explained that strategies and policies are being developed in Sri Lanka, adding however that there is no adequate data in connection with how many autistic children are there and the prevalence of autism. He noted that Sri Lanka does not have adequate data and research about the matter, and that most of the existing data are more or less estimates. Meanwhile, At My Pace – a centre for children with special needs – Founder Nilu Perera said that especially in rural areas outside of Colombo, children with autism do not receive enough attention, as there are limited resources and centres designed to assist those with special needs. She told The Morning that hospitals will refer children to clinics, which they visit once or twice a month and thereby do not receive the intensive and consistent therapy that they need. She added: “Autism could be diagnosed at six months, as, in order to provide proper therapy, an early diagnosis is essential. However, the majority of Sri Lankans are not educated enough on autism to recognise symptoms, such as when children are unresponsive or they lack communication skills. The only symptom that is commonly identified is the speech delay; however, there are many other red flags that go unnoticed. To mitigate this problem, it is important to work towards increasing awareness amongst the general public and expecting parents through campaigns and the media.” A recent study titled “Knowledge about diagnostic features and comorbidities of childhood autism among doctors in a tertiary care hospital” conducted by several local researchers, said that knowledge regarding childhood autism is poor among doctors in tertiary care hospitals. The study included 176 respondents (medical officers), including 78 (45%) working in a medical speciality, at the Colombo South Teaching Hospital. The study report said that the majority (61.9%) of the respondents considered themselves incompetent in identifying autism. It added that the highest level of knowledge recorded was with regard to symptoms of impaired social interactions (75.81%), while the lowest was about restricted repetitive interests/behaviours (60.79%), with a significant difference between medical officers and postgraduate trainees. With regard to various aspects of knowledge on autism, the study report said that 116 (65.9%) respondents knew that the delay or lack of speech development was a feature of autism and 56.8% knew that social smiling was absent in children with autism. However, only 49.4% were unaware that children with autism have a strong preference for regimented routine activities. In addition, 93 (52.9%) respondents were unaware that autism is associated with epilepsy while 72 (40.9%) respondents did not know that autism is associated with mental retardation. “The mean knowledge did not differ significantly with sex, age, years of experience, or the specialty of work,” the report said, adding that postgraduate trainees had significantly better knowledge than the medical officers in identifying symptoms of autism. In addition, those who considered themselves competent in identifying autism had significantly better knowledge than those who did not, according to the study. The report added: “The implications of the lack of knowledge about autism among healthcare providers include misdiagnosis, delayed diagnosis, and delayed intervention. As early intensive behavioural interventions have been shown to improve adaptive behaviour, language, and intelligence in autism, delay in diagnosis ultimately leads to poorer outcomes. In addition, it has been shown that due to inadequate knowledge, healthcare workers fail to offer information to carers, who in turn resort to other resources such as the media and other parents. This may lead to carers receiving suboptimal information, leading to increased financial burden, family disharmony, increased caregiver challenges, and increased risk of mental health problems among the parents.” It concluded: “Knowledge of diagnostic features and comorbidities of childhood autism among doctors of the tertiary care hospital studied is poor, and further studies are needed to ascertain whether the level of knowledge is similar among doctors in primary healthcare settings.” The study was conducted by Yasodha Maheshi Rohanachandra of the Department of Psychiatry of the University of Sri Jayewardenepura, Dulangi Maneksha Amerasinghe Dahanayake and Gampolage Swarna Wijetunge of the Lady Ridgeway Hospital for Children, and Lochana Thivanka Rohanachandra of the Colombo South Teaching Hospital. Meanwhile, the Department of Social Services told The Morning that programmes are underway to identify how many autistic children there are in Sri Lanka. Also, the Department is currently in the process of formulating necessary rehabilitation plans after identifying them at the community level, according to the Department’s National Programme on Community-Based Rehabilitation for the Differently-Abled National Co-ordinator Sunil Galhena. When questioned about the level of awareness among the public about autism, Galhena said that it is not sufficient, and that the Department has started awareness-raising programmes through the Divisional Secretariat (DS)-level groups it had established. He further said that the Department is carrying out rehabilitation programmes in the country according to a plan.   Education for autistic children   According to Daddys Lanka Autism Centre Chairman Dr. Damsinghe, Sri Lanka should focus more on making available appropriate educational opportunities and establishing a proper social security system for autistic children.  Adding that in the existing education system autistic children face many issues including discrimination based on their medical conditions, Dr. Damsinghe explained: “Among other issues, there are issues concerning providing school education to autistic children. There is also an issue of schools rejecting these children. I think that raising awareness about the education system’s issues should be the media’s priority, and the system should pay attention to embracing these children more. There are educational opportunities for autistic children in many schools in Sri Lanka, but we cannot say that their standards are as good as those of schools in foreign countries. That is an issue that needs attention. When autistic children attend schools, parents of other children oppose giving educational opportunities to these children, claiming that these children would hinder their children’s education. As far as autistic children are concerned, Sri Lanka’s education system cannot be reformed until and unless the selfish nature of most parents is changed.” According to Dr. Damsinghe, such progressive changes, in order for autistic children to reach better educational achievements, would not be possible unless the competition among parents comes to an end, and the examination-based education system is also replaced with an education system based on good values and knowledge. Speaking of the overall education system, he noted that like other countries in the world have done, Sri Lanka should pay attention to recognising separate qualifications for job opportunities and university entrance. By implementing such reforms, according to Dr. Damsinghe, Sri Lanka would be able to change its education system for the better. He underscored that the manner in which Sri Lankan society embraces autistic children needs to be changed and that the existing treatment of such children is demeaning. He said that Sri Lankan society, instead of accepting autistic children as they are, pities them, whereas in foreign countries, the public extends their support to these children. He noted that this is one of the biggest issues Sri Lanka is facing. “Sri Lanka is shaming autistic children claiming that they are ‘sinners’,” he added. When queried about the nature of societal changes Sri Lanka should adopt to improve the treatment of autistic children, he added that there is no need for special changes, adding that Sri Lanka’s environment is quite suitable to bring up autistic children. He explained: “Having a challenging environment is more suitable for an autistic child than a well-organised environment. There are challenging environments everywhere in Sri Lanka; for example, the nature of the environment in a market helps improve an autistic child’s adaptation skills. Also, when they walk on a street, the unpredictable nature of a normal street is more suitable for an autistic child. As a matter of fact, exposing them to such unplanned, changing environments helps them in the long run to adapt to normal society.”    Social welfare/security system   The WHO says that people with autism are often subjected to stigma, discrimination, and human rights violations, and that care for people with autism needs to be accompanied by actions at the community and societal levels for greater accessibility, inclusivity, and support. Speaking of the assistance provided by the authorities to autistic children and their families (parents), Dr. Damsinghe said that Sri Lanka does not have a proper social welfare system for autistic children, and that their issues have become their parents’ issues too. He added that parents of autistic children have concerns as to their children’s future wellbeing, especially when they are no longer able to assist their children. He emphasised: “There is no discourse about such practical issues. In Sri Lanka, the social welfare system means the small amount of allowance given by the Department of Social Welfare, and Sri Lanka does not have a proper social security system. Other countries such as England have in place various schemes which include providing parents of autistic children with allowances and sometimes the entire salary, thereby enabling these parents to look after their children. Sri Lanka may not be able to implement such programmes due to the state of the country’s economy, but, I am of the view that Sri Lanka’s social welfare system should be further improved for children with special needs.” Perera also said that social security for disabled children is also essential, as health insurance and other aspects of welfare provided by the Government do not address the needs of autistic children and the lack of support provided to them. When contacted by The Morning, the National Secretariat for Persons with Disabilities said that the Secretariat offers various types of relief for those living with disabilities and that autistic people also receive assistance under these programmes. Dulani Sakalasooriya of the Secretariat told The Morning that there are no special programmes for autistic people currently, and that any person seeking assistance from the Secretariat is required to apply through the DSs and be shortlisted first. She added that under the current programmes, several types of allowances are offered, including a living allowance of Rs. 5,000, an education allowance of Rs. 10,000, and a self-employment allowance of Rs. 20,000.   International approach and Sri Lanka    At the 67th World Health Assembly in 2014, a resolution with regard to “Comprehensive and co-ordinated efforts for the management of ASD” was adopted with the support of more than 60 countries, the Ministry of Health, in a 2019 Epidemiology Report on ASD, said. The Ministry added that this resolution urges the WHO to collaborate with member states and partner agencies in strengthening national capacities to address ASD as well as other developmental disorders, and also the Sustainable Development Goals (the Global Strategy for Women’s, Children’s, and Adolescents’ Health 2016-2030 and the Nurture Care Framework) to endorse disability-inclusive principles. “This acts as a roadmap for policy and action to address the needs of people with disabilities, thus ensuring that people with disabling conditions such as autism have adequate access to health, education, optimum wellbeing, and participation throughout the course of life. Also, there are efforts by the WHO and partners to recognise the need to strengthen countries' abilities to promote optimal health and wellbeing of all persons with ASD,” the Ministry said. The WHO's efforts focus on increasing the commitment of governments to taking action to improve the quality of life for people with autism; providing guidance on policies and action plans that address autism within the broader framework of health, mental health, and disabilities, contributing to strengthening the ability of caregivers and the health workforce to provide appropriate and effective care for people with autism; and promoting inclusive and enabling environments for people with autism and other developmental disabilities. India and Bangladesh, among other countries, appear to have in place several mechanisms for autistic people. In India, as per the Persons with Disabilities Act, schools are asked to provide part-time classes for autistic children who cannot integrate into normal schools; however, the facilities and training for autistic children to receive a comprehensive education are not provided. Schools are also required to employ trained teachers and be in contact with resource centres in order to effectively provide special facilities to children with special needs, and it is essential for extracurricular activities to be made available to children with special needs. Also, those with disabilities are prioritised in healthcare and children are screened regularly to test for symptoms using the Indian Scale for the Assessment of Autism between the ages of three and nine. In Bangladesh, all government hospitals have wings for disabled children with paediatricians, psychologists, and physiotherapists. In addition, 12,000 specialised teachers have been trained by the National Academy for Autism and Neuro-Developmental Disabilities and all governmental training institutions have modules in this field at a Bachelor of Education level.   According to those who spoke with The Morning, even though several programmes are underway to assist those living with autism, there is also a need to improve these programmes. Also, in order to increase and improve the available services, having collected accurate data is also necessary, which Sri Lanka is yet to implement. The more a society is diverse and accepting of diverse communities, the more likely a country is to progress. When it comes to those living with disabilities, leaving anyone behind is not an option.      


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