Autism spectrum disorder is a developmental disability defined by the way it affects a person’s ability to communicate, socialize and fit in society. We sat down with Prof. Samanmali Sumanasena, an experienced clinician and an academic in the field of child development and child disability, for an interview on the way autism affects children, which proved far more informative than we anticipated. This article is written based on that interview.
Autism Spectrum Disorder is a developmental condition that involves persistent challenges in social interaction, speech and nonverbal communication, and restricted/repetitive behaviors. While the exact causes of autism are still being researched, it has been found out through Identifiable family lineages that genetic factors play a definitive role.
Autism emerges from birth and it is possible to classify the ways it can be seen in a child into two. Firstly, autism affects a child’s ability to communicate and interact in a social setting.
For instance, looking at their mother’s eyes and smiling – one of the first Interactions that happens between a child and its mother – may start as early as a few days or weeks after birth. Infants are naturally programmed to do this. While most infants would look at their mother’s face when presented closely and start suckling their mother’s breast a few hours after birth, those with autism may fail to do either of these. This lack of natural programming is one of the first signs of autism. While it is not possible to definitively say these children have autism at this point, clinicians and parents do need to be concerned about their baby’s behaviour. Children later Identified to have autism are also generally crankier, less consolable, and more difficult to handle and be put to sleep at night.
Another thing to notice is the smile – or lack thereof. Babies should smile very well with their familiar caregivers by 6 to 8 weeks. By 4 to 6 months, they should voluntarily smile at people around them and until about 9 months this should continue – after which they may be a bit more introverted. Babies should start babbling and interacting with other people after nine months. They should respond to social games like peek-a-boo or looking at something pointed at by someone else and responding (this is called triadic joint attention). Babies with autism may lack this initiation and response to social interactions.
Autism may also manifest through repetitive behaviour and the absolute need or the total aversion to sensory stimuli. Repeating words involuntarily – a condition called Palialia – can be a sign of autism. For instance, presenting a pen to a baby and saying “pen” might prompt them to say that word. However, this may not necessarily mean they are forming a connection between the object and its name. Instead, they may simply be repeating what is said to them. While just repeating a word cannot be considered a sign, constant repetitive behaviour can be. Repetitive behaviour may also be spotted in children when they play with toys, which usually happens 18 months or so after birth.
It is important to remember that parents play a significant role in a child’s development. This is even more true in the instance of a child with autism. Being ignorant about their child’s autism, or worse, being in denial of it can result in serious consequences for the child’s development. This is concerning as literacy on child development in Sri Lanka is severely lacking.
“Parents who will understand this condition and who will understand how to address the needs of the child – I think that is the most fortunate thing that could happen to a child who is defined to have autism”
For children with autism, fulfilling their right to education is also a challenge. This Is especially apparent in Sri Lanka where the majority of children access a public education system that does not always have the resources necessary to cater to children with autism or other developmental disorders. Children with severe autism may be non-verbal, exhibit highly repetitive behaviour and have a high level of difficulty in socializing. The mainstream education system might not be suitable for them. Near the other end of the spectrum, even children with mild autism face challenges in an environment that generally doesn’t recognize their disability. Children with an aversion to sensory stimuli may struggle in a loud school environment. In addition, lack of relevant knowledge about ASD among teachers can result in children with ASD being perceived as rude or disruptive.
An educational system that does not have educational psychologists, occupational therapists, doctors who can treat them or teachers who can understand their limitations results in children with autism and other developmental disabilities facing severe limitations in accessing education.
This is further complicated by the stigma against autism prevalent in society. As a matter of fact, there have been instances of parents refusing to let their children study in classrooms with children with autism sometimes citing safety concerns.
“Families, communities need to change. They have said ‘because there is a child who screams in this classroom, we are not going to send our children to this school. This child will kill my child.’ Which is absurd!”
One simple step that can be taken in the work towards eradicating this stigma is using the correct language. For instance, Prof. Sumanasena advises the use of person-first language (person with autism) to refer to children on the spectrum as opposed to identity-first language (autistic person). However, it has to be noted that a lot of people on the spectrum also embrace the identity-first language, as they feel that autism has definitely had not an insignificant impact on their lives. When it comes to children on the spectrum, listening to what their parents say would be the best way to go, Prof. Sumanasena advises. Similarly, while autism is definitely a disability, labeling a person as ‘disabled’ might be counter-intuitive.
“In relevance to autism, the term ‘disabled’ is incorrect because nobody is disabled. People can have a disability, but that does not mean they are disabled.”
It has to be noted that while children can be taught to handle autism’s effects, autism is incurable. There are many “treatments”, such as acupuncture, certain medicines, stem cell transplants, massages etc. being used to “cure” autism and they don’t work, Prof. Sumanasena emphasizes.
An early intervention by parents and the necessary accommodation in the school environment and the general society, built on proper knowledge of ASD and an understanding of its limitations can result in children on the spectrum growing up prepared for a life that is sure to be challenging, yet rewarding.
This article and the corresponding interview are part of Project Spectra, an initiative by the Rotaract Club of Faculty of Science, University of Colombo to raise awareness on autism spectrum disorder within the Sri Lankan community.
By Rtr. Cabilan Ganeshamoorthy