Autism spectrum disorder (ASD) is a complex condition with lifelong impacts, and globally it has been on the rise. Its causes are not sufficiently understood yet, as it is a combination of genetic and environmental factors. The genetic factors are mainly irregularities in the genes, while environmental factors include exposure to toxins as far as two generations before the child’s birth. Regardless, the change in brain development that results in autism occurs long before the child is born.
The global rise of the disorder has also been seen in Bangladesh, and supported by latest nationwide surveys. A recent report disseminated by a reputed institution in the country has led to much discussion at my organisation, Shuchona Foundation. It has made me question the work that has been done to create awareness regarding autism and neurodevelopmental disorders (NDDs). I realised that even the most common questions that people tend to have about ASD and NDDs seem to either remain unanswered or the answers remain inaccessible to many. This realisation was the impetus for compiling and answering questions that my professional acquaintances (including parents, specialists, educators, and practitioners) and I are often asked.
Understanding autism in Bangladesh includes looking at the attitudes towards ASD in our society, its social implications, and the tools and methods available for individuals living with ASD – all of which this Q&A aims to address.
ATTITUDE TO ASD IN BANGLADESH
Is autism on the rise in Bangladesh?
Survey figures support that Autism Spectrum Disorder is on the rise globally. The WHO accepts the rate as 1 in 100 individuals being on this spectrum. Some countries have higher rates because of more rigorous and regular measurement systems of child development and functioning.
In Bangladesh we have done several surveys that are limited in scope and design, so we can’t trust the prevalence of the disorder from such data. Presently, about 0.17 percent persons are diagnosed with ASD in Bangladesh, which is 17 out of every 10,000 people.
While a number of different factors are behind the rise in the disorder, some changes in the figure can simply be explained by the fact that a child diagnosed with ASD today would just have been misdiagnosed not too long ago, or be seen as “not quite right” which is something our society tends to do for a broad range of mental health issues.
ASD is a complex disorder, and relatively new in our understanding of how it presents among individuals in our cultural context. Many of our researchers have also not spent a lot of time differentiating autism from other neurodevelopmental disorders, and therefore their understanding of ASD is also limited. This is especially true for persons with ASD who are intellectually in the average or higher range, or high functioning, meaning they have milder, or fewer typical ‘symptoms’ (I prefer to call them characteristics).
This presents its own set of challenges around the world, but particularly in our country. Since autism is based on brain development most of the work is done by medical professionals. But autism isn’t a disease and therefore a typical medical model does not fit.
What are some of these challenges particular to Bangladesh?
A lot of stigma is attached to disability in general, and even more so to mental health conditions or atypical behaviours (like those seen in individuals with autism). Individuals with autism look and behave like everyone else most of the time, until the moment they don’t! So they also never get the compassion that someone with a more physically obvious disability might get.
Furthermore, given the genetic factor to the condition, families are often made to feel shame by association where none should exist. We have therefore focused the last few years on reducing the stigma.
In spite of small successes, we still haven’t succeeded in fully helping everyone understand that persons with ASD can have many skills. In fact, I would say that an individual with autism has more skills than limitations. Even if you look at one of the key features of autism, that of repetitive, routine behaviours, imagine how in many professional areas that would actually be a much-needed asset in an employee or student.
We spend so much time focusing on what they cannot do that we forget that they may need to start learning skills a bit earlier and need a bit more practice than their typical age peers.
The stigma is linked to our expectations of someone with autism or any other disability. I would say if we want to address the challenges we need to remove the barriers we have placed, preventing their acceptance and inclusion in their families and the larger society. Many organisations are beginning to realise this and are making efforts in their own way. It’s really good to see that and we must recognise one fact: that the most effective ones were started by parents and family members, because they are the ones who recognised the potential of their loved ones before anyone else.
The entire world could benefit by making it possible for persons with ASD and other NDDs to become productive members of society.
Another major challenge about autism is that no two persons on the autism spectrum are alike. We classify autism as one disorder but in reality, it is a multi-faceted syndrome that is more like an umbrella term where features have been grouped together because of similarities. In presentation, individuals can look very different. They don’t present with the same characteristics; therefore, their needs are also vastly different.
The core feature in autism is that of the individual’s difficulty in engaging with others around them – social interaction, social communication, and repetitive or restricted patterns of behaviour and interests are the defining characteristics of ASD. There is no specific type of autism and we usually differentiate by saying they are high or low functioning depending on how severe some of the restrictive behaviours are or how long it takes for them to learn social behaviours.
A lot of the time in very young children, it’s linked closely with how quickly they learn to understand what is being said to them or how quickly they learn to talk or speak. Put very simply, we can start watching out for whether they are more focused on objects or the people around them from even before the age of 2.
Is autism something that one is born with? Is there a genetic component to the disorder?
These are questions we face a lot in our field. I’ve already mentioned that toxic exposures during pregnancy, and complications associated with delivery, such as lack of oxygen supply to the child’s brain, can disrupt brain processes before birth and shortly afterwards. Mutations in the genes associated with autism can also affect how the brain develops and functions, starting well before birth. So yes, a child is born with it; however, it cannot be reliably diagnosed before a child starts talking.
Because the brain is extremely complex, and still developing intensely the first 3 years, evidence-based interventions are extremely important, as early as possible. There are well researched assessment tools that can help us recognise autism in children as young as 12-months-old, but a knowledgeable and attentive caregiver can recognise from about nine months of age.
That is the age when the child begins to engage more with their social surroundings. How well they respond to it compared to a typically developing child is a key indicator. You do have many autism cases where the child develops typically till age 2-3 years and then begins to lose the skills that they had acquired. The loss of any previously acquired developmental skills is a major indicator for an autism spectrum disorder.
Do children with autism grow up to be adults with autism? How close are we to a cure for the disorder?
If you mention autism to most people they will inevitably think about children, because that is the typical image of autism that most of us have. But it is a condition for which there is no cure. I particularly hate that phrase because it makes autism sound like a disease when it’s not!
Individuals with autism have a brain that is physically and functionally different from most people. Therefore, how they experience the world around them, how they learn, behave and engage with everything in this world is also fundamentally different. It is a medical disorder and can be diagnosed but using the same language that we use for diseases like cancer, heart disease or even dementia is really incorrect and unfair.
It also is very hurtful to those individuals and their families when we use negative terms and terminology that compares autism to death causing disintegrating conditions. The best way to describe someone with autism would be to say they are neuro-atypical.
It is true that children with autism grow up to be adults with autism. But we are still learning how the symptoms change with age. For many, the sensory sensitivities become less extreme, so they are able to function better in the community. When given the right interventions and schooling where they are taught to not only read and write but also how to take care of themselves and their daily needs, use money, move around in society and communicate their needs, they do much better than those who aren’t.
A little bit of compassion, patience and tolerance goes a long way to making an individual with autism live happily and productively in any family or community. We just have to remember they don’t learn the same way or at the same rate as most people around them. And we all – the individual’s family, the psychologists, therapists, teachers and others who come into contact with them on a regular basis – have an important role to play in helping them acquire those life skills.
From personal experience we have often found more “aggressive” behaviour in children with autism.
It is true that some individuals on the autism spectrum can act out aggressively – we call it “challenging” behaviour because despite being distressing, it is something that can be overcome. Challenging behaviours often occur when an individual wants to make their preferences known, but lack of speech, or discomfort from hypersensitive sensory experiences, or even as a way to seek sensory sensations, can all be expressed in an aggressive-like behaviour. We have to first understand why they are behaving this way and then seek the right intervention. Again, we can never assume the cause to be the same for everyone.
LIFE FOR PERSONS WITH ASD
Are there certain emotions like sadness or guilt that people with autism do not feel?
People with ASD feel the entire gamut of emotions that everybody feels. There’s nothing to support the fact that they don’t feel any specific emotion; they just have difficulty showing it. This misconception probably exists because most people with ASD lack social communication and interaction at varying degrees. However, we know that persons with ASD feel any emotion that you and I feel.
What parenting styles can increase the chances of autism?
This line of reasoning has given birth to a number of myths around ASD – from demonising working mothers to questioning how family units are set up.
There have been national level surveys conducted recently exploring these mythical correlations. Autism does not occur more in urban areas or among educated families or even wealthier families. The higher prevalence among these groups in our recent prevalence studies may simply be due to better information and resources, and any suggestions otherwise is equivalent to the vaccination myth perpetuated by a single study that has been debunked and strongly castigated by the medical community.
Autism is so complex that we tend to latch onto the first and easiest reason we can find. Many of the thoughts such as nuclear families, mother’s education level, child rearing practices causing the lack of attachment, and other correlations in the study have already been scientifically proven as false in many countries. In fact, a most recent, very rigorously done study in India does not even indicate a difference in a higher urban prevalence rate.
These kinds of studies and potential non-scientific comments by professionals are extremely harmful as it implies that mothers being educated or employed may cause autism. The chances of poor nutrition of pregnant women, exposure to second hand smoking and gas fumes, lead paint, asbestos and other toxins are more likely to increase the chances of autism, as we know that they already cause low birth-weights, smaller head circumference, premature birth, and negatively impact neonatal development.
We have to understand that correlation does not necessarily mean causation. And if a cause has already been debunked or has no scientific basis, it should not continue to be discussed as a possible causation factor.
Autism is not caused by parents. It can’t be, because the brain begins to develop long before the baby is born. We know that the atypical neurological development starts long before the child starts living in a family unit. But because we know the brain is capable of changing or ‘fixing’ many of these atypically developing brain-pathways early, intensive evidence-based interventions can make a significant difference in making it typical.
Therefore, we need to recognise as early as possible when a child does not engage with their environment the way they should for their age and interventions should focus on essentially teaching them what they need to learn. In order to intensify and increase the effectiveness of the interventions, they have to be done not just with the therapist but practiced in various forms in the home within a more natural home care setting. In order for that to happen, parents and caregivers of the child have to be taught how to do it so that it doesn’t copy what the therapist does but essentially help the parents and caregivers to understand how best to teach their child what they need to know as well as how to manage challenging behaviours.
Because of difficulties with sensory processing and communication, some children with ASD respond negatively to some typical parenting behaviours, such as touching and hugs. They may require a different approach, perhaps a more direct communication style, in order to understand others. It is important not to assume that the parenting style is causing the child’s difficulties, and specifically to know that a parent’s background such as wealth or level of education has no bearing on a child’s likelihood of ASD.
ASD AND BANGLADESH’S MILESTONES IN THE FIELD
So, we now understand that ASD is a complex condition with lifelong impacts. What kind of support systems do families have to deal with ASD in Bangladesh?
Bangladesh has made remarkable strides in the area of mental health, autism spectrum disorder and other neurodevelopmental disorders through awareness and policy changes; side-by-side we are also making progress in practice.
The national parliament of the government of Bangladesh has declared two important acts to protect the rights and ensure safety of the differently abled persons. One is The Disability Rights Law, 2013, which ensures the rights and dignities of persons with disabilities, including right to education, physical and psychological improvement, enrolment in regular schools and public transport, the right to a national ID card, etc. The other is the Neurodevelopmental Disability Protection Trust Act, 2013, which highlights issues related to providing physical, psychological and economic assistance to all persons with disabilities.
Bangladesh has developed the Neurodevelopmental Disability Protection Trust Act 2013, and made amends to the Disability Law 2013, to align Bangladesh’s policies with the international goals of the UNCRPD.
There is even a National Strategic Plan for Neurodevelopmental Disorders in place. Our challenge is now to effect the policy level changes across the board, and institute more educational programs nationwide to begin to understand this extremely complex subject.
Additionally, all the relevant ministries of Bangladesh have undertaken programs to address the needs of persons with ASD and their communities through a cooperative and collaborative multi-ministry committee and support from parents, experts and other relevant stakeholders.
Institutional developments include special needs schools, disability service centres, introducing autism in the national curriculum (both by mandating seats for children with ASD and by explaining to all students the issues of ASD). In addition, trainings on ASD and other NDDs are being continuously conducted for doctors, nurses, educators and other relevant professionals.
Bangladesh seems to be working towards a more inclusive society for persons with disabilities – it is evident from policy to practice.
As a parent, if I suspect that my child may be on the spectrum, what should be my course of action?
If such suspicions arise, it is best to seek a professional opinion. As we have already discussed, in both ASD and other NDDs, early interventions make a big difference in management of the disorder.
There are Child Development Units in different hospitals; a parent could also talk to their paediatrician, or general practitioner about their concerns who will be able to guide them to the relevant place. However, one thing I must mention is that there is no shortage of information on the internet regarding autism.
While it is definitely encouraged to research on the disorder to better understand it, one shouldn’t self-diagnose or rely on third party information. If you have suspicions, your first step should definitely be to seek professional diagnosis!
For more information, some links which may be helpful for information on ASD are: