Rukhmila Zaman :
The subject of autism continues to carry one too many misconceptions in Bangladesh amid perceptions that individuals who are autistic are mad, mentally retarded, physically disabled, mentally ill and/or possessed by demons. Rather, it is a phenomenon characterized by neurological functions that are markedly different insofar as their influence on social perceptions, social interactions and communication with the external world. These neuro-developmental differences are not necessarily disabilities. On the other hand, these differences in the brain biochemistry present a very real set of extraordinary strengths and everyday challenges. This means that young people who think and perceive differently can be well on their way to a path of destruction and self-sabotage – unless the government is ready to step up to the task of helping them channel their potential effectively by educating and encouraging their families, schoolteachers and other authority figures to create a learning environment that appreciates and acknowledges the difference(s) in their thinking, capabilities, behaviors and temperaments.
What is Autism?
Autism is a condition where the brain cells that operate differently within the central nervous system are neurons in the cerebellum, the portion of the brain (in the back of the head), which is responsible for the control of balance and voluntary and involuntary movement. Because of this biochemical structure, these neurons are hypersensitive. That means children with autism are extremely sensitive to loud noises, bright lights and/or crowded environments, have trouble talking, making friends and/or fitting in and adapting to changes in life circumstances (even if said change is as simple as trying a new food).Many such children are prone to repetitive behaviors, which may include tics, such as constantly flicking their wrist, spinning objects, tapping their toes or flipping toys.
What causes Autism?
Autism is not the fault of the children who have it. It is a condition that children are born with. The exact cause(s) of autism remain unknown. However, research indicates that autism can be attributed to a number of factors:
Genetic Mutations
In the early 1990s, researchers discovered that mutations on the ‘X’ chromosome were most likely to increase risk for autism while accounting for an increased susceptibility among boys to variations of this mutation and subsequent behaviors consistent with autism. One particular gene where mutations have been found to be more definitively linked to autism which is a type of protein in humans. That is because mutations on this gene cause hyper-connectivity between the neurons in the brain.
Environmental and PrenatalFactors
Many theorists and researchers have propounded that certain environmental agents, such as exposure (of a pregnant woman) to alcohol and/or medications like valproate, paracetemol and thalidomide could lead to birth defects correlated with potential autism risk factors. Others suggested a link between MMR (measles, mumps and rubella) vaccinations and autism. However, later studies indicate that there is little scientific basis for such claims, although the possibility that one or more of these factors may cause autism has not been discounted.
Maternal Health
Children of pregnant women who have autoimmune conditions like diabetes, thyroid problems and inflammatory diseases are at greater risk for being born autistic. These ailments can damage fetal and embryonic tissue, wreaking havoc on the nervous system of the developing fetus. Prenatal viral infections can also increase risk for autism.
Exposure to Stress
Many retrospective studies show that stressful life events such as job loss, family problems, financial strain and/orgrief – sometimes, accompanied by chronic or episodic depression- can distress an expectant mother and disrupt the brain development of her unborn baby, producing behaviors consistent with autism. This is because environmental stressors produce a gene-environment interaction, boosting testosterone levels in the mother’s amniotic fluid. This can change brain development in the growing fetus by enhancing the brain’s ability to identify patterns and analyze complex systems while diminishing empathy and communication, when the child is born.
Autism is far more prevalent than we think it is
About 1 in 40 children in the U.S. has autism, according to a study conducted by the National Survey of Children’s Health (NSCH) in 2016. This prevalence is higher than the 1 in 59 estimate released by the U.S. Center for Disease Control and Prevention (CDC) earlier in 2018, based on a 2014 survey of 325,483 children across 11 U.S. states. Although there is a long way to go in effectively diagnosing and treating autism, efforts have been initiated in the U.S. through various evidence-based strategies intended to support interventions.
Approaches to Autism in Other Countries – Cases and Examples
Sylvia Diehl, a faculty member at the University of South Florida, has reported on four case studies where American children with autism have been found to make big strides in their progress by using a variety of speech-language and vocalization techniques, facial expressions, picture symbols and assistive technologies such as speech-generating devices.
The case studies include that of Anderson, a three-year-old boy whose communication development was delayed although he had begun using vocalizations when he was three-months old. That is when the Picture Exchange Communication System was considered for him, along with incidental teaching methods and a system of visuals that he could use at home and preschool. The incidental teaching methods included joint activities like singing and swaying to nursery rhymes like ‘Ring around the Rosie’ and ‘Row your Boat’ while joining hands with other people. All of these techniques were used in various settings with various people, and these activities were socially pleasurable for Anderson, too. Roughly, a year later, preschool videos showed that Anderson was successfully communicating (making requests, sharing opinions and/or protesting) through the PECS, speaking when he counted numbers and made one-word requests, and responding to simple commands like ‘Get ready, get set, go.’
Then, there is the story of twelve-year-old Tait (diagnosed with autism at the age of two) who made significant progress in his communication two years after he started using AAC (Alternative and Augmentative Communication) with the help of a positive-behavior support team of communications partners and speech-language intervention at a hearing clinic. The AAC is a communication device that allows children to use language to communicateso that they can be understood by other people. Tait’s AAC device has more than 200 pages of pictures, signs, symbols and icons, which he uses to independently express feelings like anger, sadness, happiness, frustration and/or a need to calm down. Before the AAC, Tait was unable to communicate verbally and could not participate in peer activities. He was also aggressive and threw tantrums and damaged property.
Key Takeaways
The learning and development tools that are seen to offer such young people and their families the leeway to view their current realities through a different lens provide a practical perspective on how a supportive and stimulating environment can help individuals with autism access and take ownership of their own learning process, and reshape their approach to social perception and external communication.
No individual with autistic symptoms, or even the same type of autism (classic / high-functioning/ atypical), is the same. It is imperative for each child to have a team of communications partners, educators and peers they can consistently work with, along with their own parents and siblings.
Thirdly, the progress noted in the foregoing case studies does not mean that assistive technology aids like PECS and AAC are the be-all and end-all in helping children with autism address their challenges. What is more important is a sustained and progressive effort in identifying their strengths and abilities while helping them work through their impairments with creative and innovative solutions, which could really be as simple as cutting out blocks of letters from chart paper.
Scenario in Bangladesh
In Bangladesh, autism remains an underestimated yet significant health concern. In a 2016 study conducted by the Bangladesh Ministry of Social Welfare, autism accounted for a whopping 19% of total neurological disorders recorded. Nearly 1 million people in Bangladesh have autism, including 300,000 children, with one out of every 94 boys and one out of every 150 girls, affected.
Yet, research on autism is at a nascent stage in Bangladesh. According to another study conducted on 50 children in two autistic schools (Bangladesh Protibondhi Foundation and the Autistic Children Welfare Foundation, Bangladesh), physicians mainly prescribed vitamins (to 50% of those respondents), antiepileptic drugs (to 12% of all respondents) and antipsychotic drugs (in 4% of the cases) and physical and occupational therapy for most of those children. However, 82% of their parents were not satisfied with steps taken by the government to address this issue. Furthermore, approaches to diagnosis, medication and therapy were seen to be alarmingly deficient despite an unprecedented rise in autism across cities like Dhaka.
First and foremost, schools for children with autism remain few and far, between in Bangladesh.
Secondly, there are only 200 psychiatrists across Bangladesh. Despite a well-developed three-tiered healthcare delivery system in Bangladesh, support services for autism remain confined to the upper echelons of society while semi-urban and rural areas face large gaps in diagnosis and treatment.
Additionally, and most importantly, parents of children with autism face a social stigma in the form of discrimination, devaluation, apathy and ridicule. Researchers have reported that increased parental stress, as a result of such ill treatment, make fathers of children with autism in lower-income communities more susceptible to substance abuse as a default coping mechanism for what they perceive as a curse and/or form of injustice. Another outlet for frustrated parents is the world of fortune-tellers and faith healers who promise to remove hexes and spells – in return for money, of course. More than 50% of rural people surveyed by the National Institute of Mental Health of Bangladesh reported having faith in traditional healers and said that autism and related conditions were caused by evil spirits that medication would not vanquish.
First Concern to Action
It is true that the government of Bangladesh has generally been cooperative and supportive in terms of committing to reduce the stigmatization associated with autism, and that certain initiatives like a short episode of the cartoon ‘Meena’ (staged in a sub-district level) have been undertaken to raise awareness of autism.
However, one short episode or one lone initiative, here and there, will not suffice. There needs to be a sustained commitment to raising awareness among families and incorporating autism care into the health service system at the primary healthcare level by training physicians to become more skilled in the screening, diagnosis and management of autism. This also involves decreasing autism treatment costs through capacity building and educating health professionals about the benefits of a multidisciplinary approach and support system for children with autism.
The ratio of the Bangladesh’s education budget to national GDP hovers at around 2%, and has been for the last 15 years. That figure is much lower than in many other Asian countries. Total government spending in Bangladesh increased to BDT 1.45 trillion (USD 17.1 billion) in 2018, reflecting a 22% increase from the BDT 1.18 trillion (USD 14 billion) in 2017. The 2018 government spending was also the highest since 2011. Yet, Finance MinisterAMA Muhith proposed that an allocation of only 11.4% of the total outlay on education as a whole. And allocation for healthcare is less than half the spending allocated for education! Of these miniscule portions allocated for education and healthcare, the spending that goes into learning, development and health service support systems for children with autism and related conditions is negligible.
In a country, where a growing incidence of autism has been reported, it is essential to funnel money for autism-related research, education, training and healthcare if these children are to be productive contributing members of the global knowledge society tomorrow. The need to do so is urgent. This first calls for a change in mindset at the governmental level. This calls for getting rid of any associated stigma at the governmental level. It calls for concerted and coordinated action not just on the part of one or a few persons, or private and/or non-governmental organizations, but on the part of mainstream government officials and policy framework planners, as part of a team that is politically committed to making certain adjustments to bring out the best in its citizens.
Recommended Measures for a Way Forward
First and foremost, it is crucial to conduct periodic and regular workshops as part of an Autism Awareness program targeting parents, siblings and other family members of children with autism. As part of this program, it would augur well to design workshops aimed at empowering and educating family members and opening them up to new creative and intellectual possibilities for helping and supporting their children. For instance, the program could span classes and workshops on identifying the child’s unique abilities, pinpointing specific challenges, and developing systems customized for the child’s learning and progress.
Secondly, it is necessary to put forward a list of national guidelines and best practices for autism management that serve as a point of reference for anyone who needs it. These could include training materials and/or manuals containing different modules that use multimedia, visuals, audio-based tools, mobile technology, and video-based communication interfaces, where trainees and educators can interact with instructors, trainers and/or experts. It is necessary to invest in experts to train field-level physicians, including primary-care doctors and pediatricians. It is important to assess the effectiveness of every such program and/or effort by assessing the attitudes and management plans of primary health-care physicians.Physicians need to be trained to identify and accurately diagnose cases of autism as early as possible because initiating educational and health interventions at an early stage result in better outcomes for children.
The third key issue that needs urgent tackling involves sensitizing schoolteachers and corporates to autism. Schoolteachers are ill-equipped to deal with ‘problem children’ and, in cases where they do want to help, resources are severely constrained. Teachers are barely aware of autism until after they enter the teaching profession. And, even after they do, the training they receive is limited, at best. Teachers and educators, including those in special needs schools, need to be given elaborate training on autism, well in advance. They also need to be trained on handling unforeseen situations and emergencies. Such training methods could involve role-play and drama (replicating imagined emergency situations in simulated environments) and stress inoculation (to help them prepare themselves to handle stressful events calmly). Salaries for teachers need to be increased too.
By the same token, corporates need to be sensitive to employees whose children have autism as well as employees who are autistic themselves. Additionally, the government could incentivize corporates by providing tax exemptions for(a) encouraging employees to volunteer in schools and treatment centers aimed at people with autism, (b) making a provision for hiring people with disabilities as part of their CSR (Corporate Social Responsibility) policies while creating a disability-friendly workplace ambience, and (c) hiring and nurturing people with autism.
(Rukhmila Zaman is chairperson of UCB Bank).
The subject of autism continues to carry one too many misconceptions in Bangladesh amid perceptions that individuals who are autistic are mad, mentally retarded, physically disabled, mentally ill and/or possessed by demons. Rather, it is a phenomenon characterized by neurological functions that are markedly different insofar as their influence on social perceptions, social interactions and communication with the external world. These neuro-developmental differences are not necessarily disabilities. On the other hand, these differences in the brain biochemistry present a very real set of extraordinary strengths and everyday challenges. This means that young people who think and perceive differently can be well on their way to a path of destruction and self-sabotage – unless the government is ready to step up to the task of helping them channel their potential effectively by educating and encouraging their families, schoolteachers and other authority figures to create a learning environment that appreciates and acknowledges the difference(s) in their thinking, capabilities, behaviors and temperaments.
What is Autism?
Autism is a condition where the brain cells that operate differently within the central nervous system are neurons in the cerebellum, the portion of the brain (in the back of the head), which is responsible for the control of balance and voluntary and involuntary movement. Because of this biochemical structure, these neurons are hypersensitive. That means children with autism are extremely sensitive to loud noises, bright lights and/or crowded environments, have trouble talking, making friends and/or fitting in and adapting to changes in life circumstances (even if said change is as simple as trying a new food).Many such children are prone to repetitive behaviors, which may include tics, such as constantly flicking their wrist, spinning objects, tapping their toes or flipping toys.
What causes Autism?
Autism is not the fault of the children who have it. It is a condition that children are born with. The exact cause(s) of autism remain unknown. However, research indicates that autism can be attributed to a number of factors:
Genetic Mutations
In the early 1990s, researchers discovered that mutations on the ‘X’ chromosome were most likely to increase risk for autism while accounting for an increased susceptibility among boys to variations of this mutation and subsequent behaviors consistent with autism. One particular gene where mutations have been found to be more definitively linked to autism which is a type of protein in humans. That is because mutations on this gene cause hyper-connectivity between the neurons in the brain.
Environmental and PrenatalFactors
Many theorists and researchers have propounded that certain environmental agents, such as exposure (of a pregnant woman) to alcohol and/or medications like valproate, paracetemol and thalidomide could lead to birth defects correlated with potential autism risk factors. Others suggested a link between MMR (measles, mumps and rubella) vaccinations and autism. However, later studies indicate that there is little scientific basis for such claims, although the possibility that one or more of these factors may cause autism has not been discounted.
Maternal Health
Children of pregnant women who have autoimmune conditions like diabetes, thyroid problems and inflammatory diseases are at greater risk for being born autistic. These ailments can damage fetal and embryonic tissue, wreaking havoc on the nervous system of the developing fetus. Prenatal viral infections can also increase risk for autism.
Exposure to Stress
Many retrospective studies show that stressful life events such as job loss, family problems, financial strain and/orgrief – sometimes, accompanied by chronic or episodic depression- can distress an expectant mother and disrupt the brain development of her unborn baby, producing behaviors consistent with autism. This is because environmental stressors produce a gene-environment interaction, boosting testosterone levels in the mother’s amniotic fluid. This can change brain development in the growing fetus by enhancing the brain’s ability to identify patterns and analyze complex systems while diminishing empathy and communication, when the child is born.
Autism is far more prevalent than we think it is
About 1 in 40 children in the U.S. has autism, according to a study conducted by the National Survey of Children’s Health (NSCH) in 2016. This prevalence is higher than the 1 in 59 estimate released by the U.S. Center for Disease Control and Prevention (CDC) earlier in 2018, based on a 2014 survey of 325,483 children across 11 U.S. states. Although there is a long way to go in effectively diagnosing and treating autism, efforts have been initiated in the U.S. through various evidence-based strategies intended to support interventions.
Approaches to Autism in Other Countries – Cases and Examples
Sylvia Diehl, a faculty member at the University of South Florida, has reported on four case studies where American children with autism have been found to make big strides in their progress by using a variety of speech-language and vocalization techniques, facial expressions, picture symbols and assistive technologies such as speech-generating devices.
The case studies include that of Anderson, a three-year-old boy whose communication development was delayed although he had begun using vocalizations when he was three-months old. That is when the Picture Exchange Communication System was considered for him, along with incidental teaching methods and a system of visuals that he could use at home and preschool. The incidental teaching methods included joint activities like singing and swaying to nursery rhymes like ‘Ring around the Rosie’ and ‘Row your Boat’ while joining hands with other people. All of these techniques were used in various settings with various people, and these activities were socially pleasurable for Anderson, too. Roughly, a year later, preschool videos showed that Anderson was successfully communicating (making requests, sharing opinions and/or protesting) through the PECS, speaking when he counted numbers and made one-word requests, and responding to simple commands like ‘Get ready, get set, go.’
Then, there is the story of twelve-year-old Tait (diagnosed with autism at the age of two) who made significant progress in his communication two years after he started using AAC (Alternative and Augmentative Communication) with the help of a positive-behavior support team of communications partners and speech-language intervention at a hearing clinic. The AAC is a communication device that allows children to use language to communicateso that they can be understood by other people. Tait’s AAC device has more than 200 pages of pictures, signs, symbols and icons, which he uses to independently express feelings like anger, sadness, happiness, frustration and/or a need to calm down. Before the AAC, Tait was unable to communicate verbally and could not participate in peer activities. He was also aggressive and threw tantrums and damaged property.
Key Takeaways
The learning and development tools that are seen to offer such young people and their families the leeway to view their current realities through a different lens provide a practical perspective on how a supportive and stimulating environment can help individuals with autism access and take ownership of their own learning process, and reshape their approach to social perception and external communication.
No individual with autistic symptoms, or even the same type of autism (classic / high-functioning/ atypical), is the same. It is imperative for each child to have a team of communications partners, educators and peers they can consistently work with, along with their own parents and siblings.
Thirdly, the progress noted in the foregoing case studies does not mean that assistive technology aids like PECS and AAC are the be-all and end-all in helping children with autism address their challenges. What is more important is a sustained and progressive effort in identifying their strengths and abilities while helping them work through their impairments with creative and innovative solutions, which could really be as simple as cutting out blocks of letters from chart paper.
Scenario in Bangladesh
In Bangladesh, autism remains an underestimated yet significant health concern. In a 2016 study conducted by the Bangladesh Ministry of Social Welfare, autism accounted for a whopping 19% of total neurological disorders recorded. Nearly 1 million people in Bangladesh have autism, including 300,000 children, with one out of every 94 boys and one out of every 150 girls, affected.
Yet, research on autism is at a nascent stage in Bangladesh. According to another study conducted on 50 children in two autistic schools (Bangladesh Protibondhi Foundation and the Autistic Children Welfare Foundation, Bangladesh), physicians mainly prescribed vitamins (to 50% of those respondents), antiepileptic drugs (to 12% of all respondents) and antipsychotic drugs (in 4% of the cases) and physical and occupational therapy for most of those children. However, 82% of their parents were not satisfied with steps taken by the government to address this issue. Furthermore, approaches to diagnosis, medication and therapy were seen to be alarmingly deficient despite an unprecedented rise in autism across cities like Dhaka.
First and foremost, schools for children with autism remain few and far, between in Bangladesh.
Secondly, there are only 200 psychiatrists across Bangladesh. Despite a well-developed three-tiered healthcare delivery system in Bangladesh, support services for autism remain confined to the upper echelons of society while semi-urban and rural areas face large gaps in diagnosis and treatment.
Additionally, and most importantly, parents of children with autism face a social stigma in the form of discrimination, devaluation, apathy and ridicule. Researchers have reported that increased parental stress, as a result of such ill treatment, make fathers of children with autism in lower-income communities more susceptible to substance abuse as a default coping mechanism for what they perceive as a curse and/or form of injustice. Another outlet for frustrated parents is the world of fortune-tellers and faith healers who promise to remove hexes and spells – in return for money, of course. More than 50% of rural people surveyed by the National Institute of Mental Health of Bangladesh reported having faith in traditional healers and said that autism and related conditions were caused by evil spirits that medication would not vanquish.
First Concern to Action
It is true that the government of Bangladesh has generally been cooperative and supportive in terms of committing to reduce the stigmatization associated with autism, and that certain initiatives like a short episode of the cartoon ‘Meena’ (staged in a sub-district level) have been undertaken to raise awareness of autism.
However, one short episode or one lone initiative, here and there, will not suffice. There needs to be a sustained commitment to raising awareness among families and incorporating autism care into the health service system at the primary healthcare level by training physicians to become more skilled in the screening, diagnosis and management of autism. This also involves decreasing autism treatment costs through capacity building and educating health professionals about the benefits of a multidisciplinary approach and support system for children with autism.
The ratio of the Bangladesh’s education budget to national GDP hovers at around 2%, and has been for the last 15 years. That figure is much lower than in many other Asian countries. Total government spending in Bangladesh increased to BDT 1.45 trillion (USD 17.1 billion) in 2018, reflecting a 22% increase from the BDT 1.18 trillion (USD 14 billion) in 2017. The 2018 government spending was also the highest since 2011. Yet, Finance MinisterAMA Muhith proposed that an allocation of only 11.4% of the total outlay on education as a whole. And allocation for healthcare is less than half the spending allocated for education! Of these miniscule portions allocated for education and healthcare, the spending that goes into learning, development and health service support systems for children with autism and related conditions is negligible.
In a country, where a growing incidence of autism has been reported, it is essential to funnel money for autism-related research, education, training and healthcare if these children are to be productive contributing members of the global knowledge society tomorrow. The need to do so is urgent. This first calls for a change in mindset at the governmental level. This calls for getting rid of any associated stigma at the governmental level. It calls for concerted and coordinated action not just on the part of one or a few persons, or private and/or non-governmental organizations, but on the part of mainstream government officials and policy framework planners, as part of a team that is politically committed to making certain adjustments to bring out the best in its citizens.
Recommended Measures for a Way Forward
First and foremost, it is crucial to conduct periodic and regular workshops as part of an Autism Awareness program targeting parents, siblings and other family members of children with autism. As part of this program, it would augur well to design workshops aimed at empowering and educating family members and opening them up to new creative and intellectual possibilities for helping and supporting their children. For instance, the program could span classes and workshops on identifying the child’s unique abilities, pinpointing specific challenges, and developing systems customized for the child’s learning and progress.
Secondly, it is necessary to put forward a list of national guidelines and best practices for autism management that serve as a point of reference for anyone who needs it. These could include training materials and/or manuals containing different modules that use multimedia, visuals, audio-based tools, mobile technology, and video-based communication interfaces, where trainees and educators can interact with instructors, trainers and/or experts. It is necessary to invest in experts to train field-level physicians, including primary-care doctors and pediatricians. It is important to assess the effectiveness of every such program and/or effort by assessing the attitudes and management plans of primary health-care physicians.Physicians need to be trained to identify and accurately diagnose cases of autism as early as possible because initiating educational and health interventions at an early stage result in better outcomes for children.
The third key issue that needs urgent tackling involves sensitizing schoolteachers and corporates to autism. Schoolteachers are ill-equipped to deal with ‘problem children’ and, in cases where they do want to help, resources are severely constrained. Teachers are barely aware of autism until after they enter the teaching profession. And, even after they do, the training they receive is limited, at best. Teachers and educators, including those in special needs schools, need to be given elaborate training on autism, well in advance. They also need to be trained on handling unforeseen situations and emergencies. Such training methods could involve role-play and drama (replicating imagined emergency situations in simulated environments) and stress inoculation (to help them prepare themselves to handle stressful events calmly). Salaries for teachers need to be increased too.
By the same token, corporates need to be sensitive to employees whose children have autism as well as employees who are autistic themselves. Additionally, the government could incentivize corporates by providing tax exemptions for(a) encouraging employees to volunteer in schools and treatment centers aimed at people with autism, (b) making a provision for hiring people with disabilities as part of their CSR (Corporate Social Responsibility) policies while creating a disability-friendly workplace ambience, and (c) hiring and nurturing people with autism.
(Rukhmila Zaman is chairperson of UCB Bank).
