Autism is not a term that is heard in Sri Lankan households but one that is soon becoming one that is affecting many households. With many children being diagnosed with symptoms within the autism spectrum disorder, awareness on how to address autism is a question that is raised by many, especially by parents who have children with autism. Ishanthi Perera is a consultant behaviour therapist and heads the skill building unit at ABC School of Early Learning. She spoke to SLYCAN Trust on her experiences working with autism and why autism awareness is important.
Ishanthi works on a daily basis with children with autism in her role as an educator. According to her experience in working with them, she says that struggles of children with autism can probably be only understood from their own perspectives. She explained that individuals who have written or spoken of their experiences, recount autism as a magnet that pulls them inwards, they speak of not being in control of their bodies, they speak of how insignificant sounds, colours or noises can trigger huge overwhelming feelings of anxiety in them.
“In my daily work, I see that my students struggle with behaviours such as sitting, attending to their work, stopping their stereotypye such as hand flapping or finger flicking, stopping their scripting long enough to respond to a question, meeting our expectations in class, they struggle with understanding and desensitizing to their environment which is full of sounds,” said Ms. Perera.
“Some of the children with autism struggle with sensory needs such as needing more, or less stimulation from their environment. Their struggles are tied in with their families while they are trying hard to understand this new experience of being parents of a child with autism, and doing their best to make things better for the child”, she added.
The struggles of autism are not limited to those who live with autism, but also to their caretakers. Parents are often in need of support to deal with situations of discovering their children do to be autistic, and on how to address it. Ishanthi works with many parents in her role as an educator and she commented on how it is important to understand the difficulties the parents face as well in coping with their child’s daily struggles.
“Many of the parents I have spoken to are at some stage of, what is referred to in psychological terms as, the cycle of grief. She explained that this starts with denial, then anger, followed by bargaining, depression and finally acceptance. The struggles they face are influenced by where they are in this cycle,” she explained and highlighted the need to work together with the parents in addressing the needs of children with autism.
Speaking of supports systems available across the world, Ishanthi distinguished how the capacity of different countries to finance social systems play a role in how children would be able to learn to deal with autism.
“In developed countries like those of North America national circumstances are different, and provides more mature disability-related government systems. Components such as financial aids and community centers and schools with programs for children with special needs are available which provide more inclusive educational facilities, and developed health support for individuals with special needs. There are also school appointed speech therapists and education consultants who are available to support children in overcoming their difficulties,” she said.
She expressed that in Sri Lanka, there aren’t any government funded services and activities as of yet which are similar to those mentioned above. But she also highlighted the medical facilities available, and highlighted that government hospitals such as Lady Ridgeway Hospital in Colombo and the Ragama Hospital have well trained and knowledgeable doctors who carry out assessments and give advice to parents.
One of the key challenges that children with autism face is integrating into the education system. With their specific preferences and needs, in an environment where autism awareness is not prevalent, these children would face many difficulties and are likely to be discriminated. It brings to question on how inclusive education needs to be organised, and how children with autism need to be integrated into education systems of countries.
“The usefulness of the current syllabus is questionable when it comes to children with autism. It needs to be providing life skills and vocational skills which would provide children with autism to be able to be independent in society. However this is not the case in the present syllabus used for education in Sri Lanka,” Ishanthi commented.
She further emphasized the need for positive inclusion, with support being given to families by the community they belong to and stressed on the fact that it starts with awareness and acceptance.
Dealing with autism and finding success is a collective effort. As Ishanthi explains success lies in proper liaison between public and private enterprises, and appropriate autism or special needs organisations. She also highlighted the need for vocational skills and dignified employment opportunities for individuals with autism.
“ A proper top-down approach should be taken, with the qualified individuals involved, to understand the scope of job opportunities that can be made available, and then the kind of training that needs to be given and how to incorporate this into a formal education system.
Applied Behavioural Analysis and early intervention cannot be stressed enough. If we start young and work together we can really do something special,” she added.