Viewing Autism through life course lens

With the unfortunate incident that occurred in Aluthgama recently, involving an autistic Muslim boy, it is important to emphasise on the fact that ableism shouldn’t be tolerated, and discrimination in any form is unacceptable. While raising awareness helps people understand and not be frightened by the disability, raising awareness about Autism Spectrum Disorder (ASD) and educating the public in Sri Lanka, seems to require a different approach.

Imagine that one day, you have trouble expressing any sort of emotion. You’re full of feelings, but you have great difficulty in communicating them. You’re suddenly unable to pick up on any social cues, and soon spiral down with feelings of being misunderstood. You quickly get fixated on an activity that makes you feel better, only to find out that not everyone around you can relate to your enthusiasm. 

Many would not be able to relate to any of these instances, but for a person living with Autism these and much more can be the realities they are faced with in life.

Considered a complex, lifelong development disorder ASD is known to cause significant social, communication and behavioural changes in children. Characterised by difficulties with social interaction and communication, as well as restricted repetitive behaviour, autism is prevalent globally. Males are several times more likely to show ASD features than females.  Autism is the fastest-growing developmental disability in the world. While early diagnosis is essential, therapy and intervention help children with ASD to improve themselves and lead fuller lives.

What is Autism?

Speaking with the Daily Mirror, Dr. Udena Attygalle, Consultant Child and Adolescent Psychiatrist at the Kalubowila Hospital shed light on the topic.

“Autism is considered a neurodevelopmental disorder which affects the development of the nervous system, leading to issues related to the function of the brain and the nervous system. Modern classifications show that children with ASD show persistent deficits in social, interactions and social communication across context, as well as showing restricted repetitive patterns when it comes to behavioural interactions and interest in other activities,” Dr. Attygalle explained. 

“Although there is often nothing about how people with ASD look that sets them apart from others, we see differences in how those with ASD process sensory information, emotions, differences in intelligence (in the traditional sense of IQ tests etc.) and in the way they communicate with others,” he added.

While more severe forms of ASD are easier to diagnose, the milder forms may not be so as there are many other contributing factors that can lead to similar issues.  An experienced clinician would look at many facets of the people’s interactions and behaviour, in order to understand them and give them the necessary medical attention.
With regard to the importance of increasing awareness of identifying early signs of autism, and emphasising on the importance of early screening, Dr. Attygalle said, “Autism is considered a spectrum disorder with a range of people with severe to mild symptoms. While persons with severe ASD symptoms may not be able to fully communicate using language or speech, persons with mild symptoms are most likely to have very sophisticated language and speech abilities, albeit not being able to use it fittingly in a social context”.

Diagnosis
ASD identification requires a clinical diagnosis and doctors rely on monitoring a child’s development, medical history and behavioural patterns and probe into other contributing factors in order to make a diagnosis. Although blood investigations and imaging studies cannot be used to confirm ASD, tools such as scales and observation schedules are used in the diagnostic process. 

While children with severe ASD struggle with verbal and non-verbal communication, and may hardly interact with others, those with minor symptoms may interact very well with others, but still have difficulties understanding subtle social cues, according to Dr. Attygalle.

“That being said, there can be a wide range of presentations depending on the severity of the condition, such as the developmental stage, intelligence level and other contributing factors. These symptoms would be persistent and present at a time when other children of the same age have developed social communication and interactional skills beyond this stage,” he added.

There are many with ASD features who lead completely normal lives and who may never require a diagnosis; usually with milder symptoms, some even excel in certain fields because of their intelligence as well as their intricate eccentricities.  Although some children with ASD may even demonstrate savant abilities such as phenomenal memory, calculation skills as well as artistic and mapping abilities that are far in excess of average, most struggle with social interaction and the need for repetitive or restricted interests. 

Managing children with ASD oftentimes require the help of a team of people including speech therapists, occupational therapists, special education professionals, psychologists, social workers, psychiatrists and other medical professionals. Children with autism are extremely vulnerable because of the difficulties they face when it comes to communication and social interaction; they rely a great deal on their parents, caretakers and close associates. 

Although Intervention is as crucial as early detection, therapy and unwavering patience along with proper care, as well as the right medical attention help to improve the quality of life of such people. It goes without saying that awareness is only the first step. It is crucial that we as a nation and as individual human beings look at autism and other developmental disorders through the life course lens. While understanding the condition undoubtedly helps people respond better to those affected it is high time we moved forward from the preconceived notions surrounding these disorders and start being more thoughtful and sensitive towards those around us.