Autism Abroad: How is ASD addressed in South Asia, both socially and medically?
Throughout all of Asia, autism spectrum disorders (ASD) have historically been considered a taboo subject, often not being discussed properly in both social and academic settings. This problem includes South Asia, which is comprised of India, Pakistan, and Bangladesh. In India, the country’s first rigorous report of the prevalence of autism claimed that only about 23 of every 10,000 Indian children have autism (Krishnamurthy, 2008). Similarly, in Pakistan, the prevalence of autism is reported to be approximately 1 in 120, which is significantly lower than the 1 in 54 statistic that is reported in the western world (Arif et al., 2013). It can be inferred that these low reported statistics of the prevalence of autism are largely a result of the lack of awareness about ASD, which leads to much fewer diagnoses and a false representation of the true scope of autism in South Asia, rather than there truly being a smaller existence of autism in these countries. Furthermore, in Bangladesh, research has found that families have often experienced social stigma for having a child with ASD, with many families encountering discrimination and significantly increased levels of parental stress (Soron, 2015). This is primarily due to the fact that, according to a study by The National Institute of Mental Health of Bangladesh, it was revealed that more than 50% of rural people in Bangladesh actually believe that autism (and other similar disorders) are caused by ill spirits and required spiritual treatments, rather than medical attention (Soron, 2015). As a result of this major misconception, there has been a huge barrier in promoting the scientific management and education of ASD in rural Bangladesh (and in many other areas in South Asia) since there are families who believe that children with ASD can simply be “cured” through spiritual healing methods and that ASD is something to be ashamed of. However, despite the stigmas historically present, in recent years, there has been significant progress through research in both learning more about the status of autism awareness in South Asia and in increasing the spread of accurate knowledge. As a result of learning about the social and medical barriers to autism awareness in South Asia, there have been effective approaches to combatting these problems, including the creation of a historic new treatment program in India and Pakistan which could help improve the lives of millions of children with ASD in developing countries.
Socially: A Taboo Subject
When it comes to the social aspects of autism in South Asia, there are many barriers and issues to address. Autism and common mental illnesses are usually not discussed in social settings, leading to a significant prevention to the spread of accurate information about autism. Because autism is a taboo subject, families often keep quiet about it when speaking with friends and do not typically discuss the development, symptoms, or treatment of autism. As a result of this lack of dialogue, people tend to hold onto their own (often inaccurate) beliefs about autism and other mental illnesses (including schizophrenia, depression, and bipolar disorder). Some people in South Asia, especially in rural communities, believe that autism and mental disorders are caused by supernatural causes, such as ill spirits, believing that the negative symptoms of these disorders are a result of a child being possessed. Thus, spiritual healers are often called to “cure” affected individuals of their illnesses, which is not only harmful to the individual but also further spreads a social misconception of these disorders.
In a study conducted by Dr. Muhammad Anwar, awareness and perceptions of autism in the social world of Karachi, Pakistan was tested by focusing on parents. This was done because parents are often the primary caregivers of a child, and their ability to recognize the signs and symptoms of autism is crucial in providing the best care to children with ASD. Additionally, parents were the focus of this study because social issues such as stigmatization clearly play a role in the beliefs of the public, making parental figures an interesting population to study. In Dr. Anwar’s study, a cross-sectional survey of 339 parents was conducted, excluding any individuals belonging to the medical profession, those who have any autistic children, and those who couldn't completely comprehend English. Based on the results, a “knowledge score” out of 10 was calculated to reflect a participant's overall knowledge regarding the signs and symptoms of autism and to assess prevalent opinions about autism. The results indicated that only 75% of the sample population had ever heard of autism, with those who personally knew of someone with ASD displaying greater levels of awareness.
The subjects generally displayed very poor “knowledge scores”, with a mean score of 5.59 out of 10 in perceptions of autism and 6.84 out of 10 in knowledge of autism’s signs and symptoms (Anwar et al., 2018). Furthermore, 63.7% of the parents correctly agreed that an autistic child is obsessed with the same routine and becomes upset at minor changes, 61.1% correctly agreed upon delayed language development and lack of interest in interacting with other children as a sign of autism, and 61.9% correctly disagreed that an autistic child makes good eye contact and uses appropriate hand gestures while interacting with other kids. This means that, in general, a little over half of the parents in the study were accurate in their statements about the signs of autism. The sign of autism that these parents were least aware of was that a child with autism may have no perception of fear or danger- only 37.2% of the parents were aware of this.
Additionally, 79.6% of the parents said that they consider parental counseling to be an effective treatment for autism. However, only 11.5% of the parents knew that an autistic child can be tested clinically. 61.1% of the parents were willing to get their child tested for autism, and 95.6% of the participants were willing to get their children treated if they were diagnosed with autism. However, though they are willing to get their children tested, only 15.9% of participants actually knew of any autism centers in Karachi. This means that, even if they wanted to get their children tested, they do not have enough knowledge of the resources that are available for them to do so. Ultimately, this study revealed a general lack of knowledge about autism among parents in Karachi, owing to the fact that most of their knowledge about autism comes from personal anecdotes and experiences with family members, rather than from awareness programs. On the other hand, it does show offer some hope for the future as the majority of the parents stated that they would be willing to get their children tested and/or treated for autism, and there were some parents who did demonstrate accurate knowledge about many of the signs and symptoms of ASD.
The general lack of knowledge about ASD as a result of social circumstances in South Asia extends to school settings and can be seen within primary school teachers, as well. In Dr. Muhammad Arif’s study, 170 teachers from both public and private schools in Karachi were randomly selected to complete a survey assessing their knowledge and perception of ASD. Sixteen questions were created based on the diagnostic criteria by the American Psychiatric Association Diagnostic and Statistical Manual for Mental Disorders. It was found that 55% of the teachers had acquired all of their knowledge about ASD through the media, mainly citing television and radio. Only 10% of the teachers had attended formal training about autism, and only 8.8% had attended an autism workshop. As a result, knowledge of autism was limited: only 22% of the private school teachers and 28% of the public school teachers were even aware that autism is an inherited disorder (Arif et al., 2013).
A very similar study was also conducted by Dr. Anil Shetty in India, in which 326 primary school teachers were given a self-report questionnaire (with questions based on the Autism Diagnostic Interview-Revised and the Childhood Autism Rating Scale) and were assessed on their knowledge and awareness of ASD. Each teacher was then ranked based on his/her answers, and a score of above 8 out of 12 points was deemed as “good knowledge” of ASD. Almost one-third of the teachers cited television as their primary source of information regarding ASD, with others commonly attributing their source as books, colleagues, movies, and newspapers (Shetty & Rai, 2014). This is a very similar finding as the study on primary school teachers in Karachi- it appears that, in both India and Pakistan, the primary source of information about ASD is the media rather than official training programs. Because of the social stigma associated with ASD, autism training is not yet mandated for all teachers. Only about 1 in 5 primary school teachers in India had received any form of prior autism training; as a result, even though 95% of the teachers stated that they were “aware” of autism, among those teachers, 83% actually continued to admit that their level of knowledge was inadequate.
The results from these two studies indicate that knowledge of basic facts about ASD is lacking in primary school teachers in both Pakistan and India, which is primarily a result of the lack of social awareness regarding autism. As a result of the lack of social dialogue about autism, the general population, including primary school teachers, only receive their information about ASD from the media, not from scientific sources or autism awareness programs. This research clearly displays a general lack of awareness regarding ASD in South Asia and calls for the implementation of proper autism training programs, especially for teachers. This is essential because primary school teachers play a vital role in the development of children in the early years of their lives and, if properly trained, they can play a huge role in the early identification of children with ASD. Diagnosis of autism at an early age is highly beneficial to a child’s development and to lessen the burden on the child's family (it has been found that diagnosis before the age of four leads to 10,000 USD saved per year later in life for the family of a child with autism). Thus, the ability for teachers to successfully identify students with ASD is critical to achieve early diagnoses of autism, which then enables appropriate therapies and medical care. In addition, providing teachers with sufficient autism knowledge is essential because teachers are vital in educating the next generation. A social stigma and cultural misconception must be challenged through education, meaning that educating the youth with accurate knowledge of ASD can be of huge benefit to breaking stigmas and to the future of ASD care in these countries.
Medically: Inadequate Medical Care in Many Remote Areas of South Asia
The effects of this general lack of awareness around ASD in South Asia extends into the medical aspect of treating a child with autism, as well. This is a much more prevalent issue in the remote communities of South Asia as there are many rural-based families (who often lack high levels of education) who do not even recognize autism as a biological/developmental disorder. Instead, they attribute the symptoms of the disorder to ill spirits, believing that their child has been possessed and thus choosing to take children with ASD to “spiritual healers” rather than to medical professionals. According to Dr. Syed Hashim Raza, a pediatrician and specialist of neurology, almost all rural-based and even some urban-based families in South Asia resort to either traditional healers or religious leaders for treatment of their children with ASD instead of going to a physician. Unfortunately, spiritual treatments do not work in treating any of the symptoms of ASD; as a result, the next treatment option is usually seclusion of the child or even chaining. Clearly, these “treatments” are harmful for the child and do not help treat the symptoms of autism.
As a result, the medical treatment of many children throughout South Asia is compromised, and they often do not receive the help that they need. Since this problem is much more prevalent in remote, rural areas, children of lower-class families are disproportionately affected by this misconception and by the resulting mistreatment. Children in urban areas of South Asia usually receive better medical care in general, especially as many doctors in these cities have begun to receive ASD-specific training in recent years. India’s first autism training center was established in the city of Mumbai in 2004 by Mrs. Kamini Lakhani, a mother to a child with autism, who advocates for autism awareness and development.
Still, there is work to be done in the medical field regarding ASD in South Asia. Dr. Syed Hashim Raza has stated that “autism spectrum disorder (ASD) is a recognized disability in the West but has yet to be acknowledged in Pakistan, where only four categories of disability are considered – visual impairment, hearing impairment, physical disability and mental retardation (MR).” This issue is also prevalent in India and Bangladesh. As a result, another reason why many children across South Asia are not given proper medical treatment is simply because, since autism is not recognized as a medical condition, it is easy for families to dismiss children with autism children as simply being “slow” or “stupid” instead of providing them with the medical assistance that they need. As a result of the lack of awareness about autism socially, many children with autism throughout South Asia thus lack the medical care that children with autism in the West would receive. However, in recent years, there has definitely been progress in improving autism awareness both socially and medically in South Asia.
Progress: Increasing Awareness and Training
Despite the stigmas historically present around ASD in South Asia, in recent years, there has been significant progress in the level of awareness and the spread of accurate knowledge regarding autism. The government of Bangladesh has shown a strong political commitment in reducing the stigma related to autism and its management (Ehsan et al, 2018). To educate the next generation, Bangladesh’s Ministry of Primary and Mass Education has incorporated autism awareness in popular cartoons that many children and young adults throughout the country watch. Additionally, various child development centers specializing in neurodevelopment and autism have been created throughout Bangladesh in the past ten years. Autism education was also incorporated into the primary education curriculum in Bangladeshi schools, with lessons about autism taught to students in every grade. The government has also developed an inclusive educational plan for children with special needs, including giving all children with autism extra time on public examinations and reserving 2% of the seats in private schools for children with autism. The National Autism Academy was also established under the Ministry of Education to conduct research and develop a culturally sensitive, intervention-based plan for autism awareness (Ehsan et al, 2018).
Likewise, the governments of Pakistan and India have also begun to raise awareness of ASD using a similar approach. In the past ten years, many physicians from these countries have conducted important research in examining levels of awareness across Pakistan and India and calling for the implementation of awareness programs. There has been a huge push for mandated autism training programs for primary school teachers, and autism awareness workshops have become increasingly common for teachers and medical professionals to be required to attend. Many physicians receive ASD training based on guidelines from the U.K., and many also travel to the U.K. to receive training and learn about medicine there. In fact, in the past five years, there has been a historic new treatment program adapted from the U.K. and tested in India and Pakistan, which could help improve the lives of millions of children with ASD in developing countries. Scientists from the U.K. worked with colleagues in South Asia to adapt a leading UK therapy method known as PACT, which helps parents interact better with their autistic child, to South Asian healthcare. The new program, which is known as PASS (parent-mediated intervention for autism spectrum disorders in South Asia) was taught to non-specialist healthcare workers in Pakistan and India, and it was found that after 12 weeks, the children became significantly more likely to initiate communication with their parents. This new program is one-of-a-kind in that it took into account the region-specific problems of South Asia, including lack of resources, lack of trained staff, and poor access to medical centers, to create a program that even non-specialists can be taught and can perform. This treatment program has a lot of potential to shape the future of autism care and awareness in South Asia, and one can be hopeful there will be significant progress with its implementation.
Ultimately, though there are many stigmas associated with ASD in South Asia, there has been an effective approach to combatting this problem, and more children are receiving ASD treatment than ever before.
References
Anwar, M. S., Tahir, M., Nusrat, K., & Khan, M. R. (2018). Knowledge, Awareness, and Perceptions Regarding Autism Among Parents in Karachi, Pakistan. Cureus, 10(9), 299-306.
Arif, M., Niazy, A., Hassan, B., & Ahmed, F. (2013). Awareness of Autism in Primary School teachers. Hindawi, 36(2),90-95.
Krishnamurthy, V. (2008). A Clinical Experience of Autism in India. Journal of Developmental & Behavioral Pediatrics, 29(4), 331-335.
Shetty, A. & Rai, S. (2014). Awareness and Knowledge of Autism Spectrum Disorders among Primary School Teachers in India. International Journal of Health Sciences Research, 4(4), 80-85.
Soron, T.R. (2015). Autism, Stigma and Achievements of Bangladesh. Journal of Psychiatry, 18(5), 783-795.
U Ehsan et al. (2018). Confronting Autism in Urban Bangladesh: Unpacking Infrastructural and Cultural Challenges. EAI Endorsed Transactions on Pervasive Health and Technology, 45(3), 150-158.