Specialist management of children with autism can make all the difference

At the entrance of the Institute of Paediatric Neurodisorder and Autism (IPNA) on Level 7, Block F of Bangabandhu Sheikh Mujib Medical University (BSMMU), every week, you will find a group of parents waiting for their children attending the IPNA school, their emotions balanced in between relief and concern—what do you think the children will learn today? Will the teachers be able to understand how they communicate? What if they need us?

You will also hear a constant current of conversation regarding the management of their children: How do you help them retain the information they learn? What do you do to calm them when they have tantrums? Do you think lack of sleep plays a part in the frequency of seizures?

All parents worry about their children, but when you are the parent of a child with autism, the concerns you are faced with are wholly unique. Autism or autism spectrum disorder (ASD) refers to a broad range of conditions characterised by challenges with social skills, repetitive behaviours, speech and non-verbal communication. The definition in itself shows that no two children with autism will be completely alike. Every child is at a different point in the spectrum—they communicate their needs differently, react to social situations differently, and may or may not have associated impairments (such as epilepsy, ADHD, etc.). And every single child's needs must be understood and met differently, according to which point on the spectrum they are on.

Given the complexity of this condition, one can get a fair idea of how difficult it can be to provide the special care that these children need. To start with, early detection and intervention can play an important role in effective management of autism. A common misconception is that autism is a form of intellectual disability or a mental illness, but it is no such thing—it is a developmental condition that affects how you view the world and how you interact with other people, and if managed from an early age, children with autism can go on to live normal lives (depending on the severity of their condition and/or their position on the spectrum). But for this early detection and intervention, physicians with specialist knowledge on neurodisorders are necessary.

Once you have diagnosed a child with autism, you will need a multidisciplinary team working together to manage their needs, which can include psychotherapy for behavioural problems, physiotherapy to improve movement and function, and occupational therapy, which focuses more on motor skills, hand-eye coordination, etc. to help the child perform their daily tasks more easily and independently.

However, the most crucial member of this team is the special educator, who must be specifically trained to educate children with autism using a number of methods including communication techniques, group/individual activities, sensory integration, physical exercise and music/art therapy that is tailored to the needs of each individual child. This individualised educational plan (IEP) for children with autism is absolutely necessary, and it is for this reason that we decided to open a school at IPNA—so that alongside other interventions like therapy, we can also create a "model school" that will provide educators with the tools necessary to adopt specialised education for children with autism.

For example, at the IPNA school, we use the Applied Behaviour Analysis (ABA) method, which is a reward-based system of behavioural therapy that uses positive reinforcement for the children's improvement, as well as the Treatment and Education of Autistic and Related Communication-Handicapped Children (TEACCH) method and the Picture Exchange Communication System (PECS).

Another reason for this rather unusual move of setting up a school within a medical university is so that postgraduate students, especially those specialising in paediatric neurology and development, can come here and learn the variable presentations of autism, which can aid them in diagnosis when they practice all over the country. There is no one test that can be done to detect autism, so the best way to understand autism is to experience it practically.

Since 2010, there has been a massive increase in awareness on autism in Bangladesh. The Bangladesh government deserves to be congratulated for leading this awareness movement under the stewardship of Prime Minister Sheikh Hasina and her daughter, renowned psychologist and autism activist Saima Wazed Hossain—and for creating the Strategic and Convergent Action Plan on Autism and Neurodevelopmental Disorders, which very clearly and systematically sets out a strategy to deal with the complex, multi-factoral challenge of disseminating the modern protocol of autism within communities at every level. While a lot has been achieved because of this spotlight on autism that we should collectively be proud of, many of these achievements are limited to the major cities. There is still a certain lack of scientific knowledge on autism, especially in terms of management. So, for example, while we have parents coming to us at IPNA from various districts with children who have been correctly diagnosed with autism, there are many misconceptions surrounding its management—the most painful being that a simple medicine will "cure" the child of the condition.

To deal with this gap, there is no alternative to proper training and research, and the application of these learnings in practical scenarios. So far, only 15 of the government medical colleges in Bangladesh have child development centres of their own. This needs to be expanded to every government medical college in the country. Beyond the specialisation of physicians, we must train the persons who are regularly involved in dealing with autism and other neurodevelopmental disorders. With this in mind, IPNA has recently introduced a six-month Certificate Course on Neurodevelopmental Disorders for psychologists, teachers, doctors and parents from different districts to provide specialised knowledge and support to those managing children with autism and reduce mishandling and maltreatment.

Although more research is being done on autism in Bangladesh, in the long run, we need to delve into these findings further. For example, in the survey conducted by IPNA on autism among 16-30 months old children in 30 districts, we found that urban prevalence of autism was almost double the rural prevalence (25 per 10,000 compared to 14 per 10,000). Is this because of environment-related factors? Could exposure to hazardous air pollutants during pregnancy have a potential association? Going forward, we should conduct more research into the significance of relationships and associations found in surveys such as this.

Finally, we must remember that in the management of children with autism, their parents are the most important actors and the primary caregivers. During this pandemic, with educational institutions being closed and access to healthcare services becoming limited, parents of special children have struggled, especially those from marginalised backgrounds. At the beginning, I mentioned the conversations between parents while waiting for their children in front of the IPNA school. These informal discussions are a huge source of comfort to them—a rare "safe space" in a society where they still face a great deal of stigma and ostracism. We must ensure that we are able to provide more of these safe spaces, not just to the children with autism but also to their parents.

On this World Autism Awareness Day, let us remember that the end goal has to be an equal and inclusive society where children with autism can take their rightful place within our communities and reach their full potential.

Dr Shaheen Akhter is a Professor of Paediatric Neurology at Bangabandhu Sheikh Mujib Medical University (BSMMU), and Founder-Director of the Institute of Paediatric Neurodisorder and Autism, BSMMU.

Email: shaheen@ipnabsmmu.edu.bd