Apr 09 2024.
views 136Autism is a neurodevelopment condition of variable severity with lifelong effects that can be recognised from early childhood, mainly characterized by difficulties with social interaction and communication and by restricted or repetitive patterns of thought and behaviour. We spoke to a few parents and family members about the everyday challenges they face and what more can be done to support families with children on the spectrum.
Rishan Jiffry Shakoor - Parent
Q WHAT ARE SOME OF THE FIRST SIGNS THAT YOUR CHILD WAS AUTISTIC? Spinning in one place, looking at his fingers from the side of his eye, lining up toys, and an obsession with always holding a small object in his hand. My sister’s daughter was born a day after my son. Comparatively, his speech was delayed and there was minimal eye contact and joint attention.
Q WHAT ARE SOME OF THE CHALLENGES YOU AS PARENTS HAVE HAD TO FACE ON AN EVERYDAY BASIS? It was hard for me to be able to relate to friends. When we meet, the topic of conversation would usually be something funny their kids said, extracurricular activities they are enrolled in, or even something as simple as how they performed on sports day or a concert. Being invited for outings with the adults or my son being invited to kids' birthday parties were politely declined and that was mistaken for either being proud or someone who shunned their child from society. The truth is, our children depend on us. For some, it is hard to not be able to go out whenever they want to without having someone trustworthy or responsible to leave their child with. When it comes to birthday parties, our children feel uncomfortable around environments that are not adapted to their sensory needs. Being overstimulated by noises, smells, and crowds is not something a child on the spectrum would normally enjoy. Most people do not have the awareness enough to understand this. Another long-term issue we have had to face is finding the right school for him. Many institutions use the word ‘inclusive’ very loosely. Teachers are not trained, curriculums are not custom-made, intervention is not implemented in the right manner and special needs support is not as accessible in this country. For this reason, I decided to start my own special needs intervention centre to ensure the right attention is given to those who need it.
Q WHAT IS YOUR ADVICE TO YOUNG PARENTS IN A SIMILAR SITUATION? Fight for what you think is fair for your child. As soon as you notice signs of autism, get them evaluated and start early intervention typically as early as two or three. During these years the brain is rapidly developing and therefore is key to a child’s development. Children with autism should be perceived as members of society, deserving of respect, support, and inclusion. By promoting acceptance and understanding, we can create a more compassionate place for all individuals, regardless of neurodiversity. People in society should recognise that autism is a neurodevelopmental difference rather than a defect or disorder.
Q WHAT ARE SOME OF THE DIFFICULTIES OR CHALLENGES SUCH CHILDREN FACE IN SRI LANKA? There is a lack of awareness and understanding of autism in Sri Lanka. Social isolation and discrimination are common occurrences due to stigmas surrounding the condition. Access to specialised support is limited especially in rural areas. Lack of access results in delay of diagnosis and in turn delays in intervention which will impact the child’s development. Inclusion of children with autism in mainstream schools is limited due to the lack of resources, training and inadequate support. Many families face financial difficulties making it difficult to access costly therapy and limiting their access to support.
Q WHAT CAN BE DONE TO HELP IN THE LIVES OF SUCH CHILDREN BY THEIR PARENTS AND SOCIETY? Parents.
Parents need to educate themselves about autism including its challenges and available interventions. Many a time I have had clients approach me and ask how long it will take to “cure” their child. The first step for us is to accept that it is a condition that requires therapy, and intervention in order for them to get the most effective support. Parents should then seek early intervention to address developmental delays. Establishing routines, minimalising sensory stimulation and providing clear expectations help address these issues at home.
Children should be taught life skills and provide opportunities for them to learn to be independent. Finding and creating a group of parents of children with autism can provide valuable support. It helps us feel we are not alone and find we can share and gain ideas through the experiences of others. Parents need to have patience to understand and accept their child’s individuality.
Society
Society can help by raising awareness to combat the stigma and promote acceptance. Inclusive education should include educators who are trained to support diverse learners through implementing accommodations and modifications. Governments and healthcare providers need to work together to improve access to services like therapy and make it more affordable. Employment opportunities for autistic adults can help include them in society if employers can implement accommodations and support mechanisms for these individuals. Promoting acceptance and inclusion of individuals with autism in society is essential.
Q WHERE CAN PEOPLE TURN TO FOR HELP – ARE THERE GROUPS OR CENTRES? There is a Facebook group for mums with kids with special needs.
The Learning Curve is a special needs school run by founder Principal Rishan Jiffry Shakoor that provides an individualized education programme to meet each student’s unique learning style. There is also an emphasis on developing communication self-help, independence, social, motor, sensory integration and cognitive skills. There is also an early intervention and school readiness programme for students in addition to after-school support. In short, it provides an ideal education for children with developmental disabilities and learning difficulties.
Sister of a person who is autistic
Q WHAT ARE SOME OF THE FIRST SIGNS YOU NOTICED THAT YOUR BROTHER WAS AUTISTIC? My brother was quite clever – he was counting at a very young age. From what I remember, it seemed suddenly he had forgotten what he already knew. This was I think how I, as an older sibling, understood something happened.
Q WHAT ARE SOME OF THE CHALLENGES YOU AS A FAMILY MEMBER HAVE HAD TO FACE ON AN EVERYDAY BASIS AND IN THE LONG TERM? There are quite a few, but I don’t know if I attribute them particularly to my brother being autistic. Every relationship is a challenge, and as a sibling, my brother has to put up with me as I do him. My brother is well-behaved for the most part. However, he has his own routine or accepted ‘norms’ that once you deviate, he will insist on returning to what he perceives as the status quo.
As an older sibling, however, and as someone who is still not the best child my parents could have, what I can say is these situations are always harder for the parents. I know my parents would have expectations of their children out of love for the bright future ahead, and a child being autistic and not able to have a conventional future is not something any parent could anticipate. They have accepted the situation with love, but I can only imagine how difficult it would have been at the very beginning.
Q WHAT IS YOUR ADVICE TO THOSE IN A SIMILAR SITUATION? I recognise that I am a sibling first and foremost. I have three siblings in total, one of whom is autistic, and my relationship with each is unique to that person. The kind of advice I would give is the advice you would have for anyone with siblings, whether autistic or not. In my family, my brother, of course, is the most understanding because, unlike a typical society that has been nurtured into accepting only certain ways of being, he has no such prejudices. So my advice is to love and be understanding because everyone has their unique problems and concerns and no one is perfect anyway.
Autistic children do need special love and care suitable to their own needs. However, I would also argue that all children need love and care. I honestly think society should not have particular perceptions. Autism itself is a spectrum and each autistic individual would have their unique gifts and quirks. My own personal perception is no one, including autistic children, should be boxed into a certain category. We need to be a society where anyone, with their own strengths and weaknesses, is supported to live their best and happiest life possible.
Q WHAT ARE SOME OF THE DIFFICULTIES OR CHALLENGES SUCH CHILDREN FACE IN SRI LANKA? In Sri Lanka, we do not have the support systems, whether government or otherwise, that can enable atypical individuals to live their best lives.
Q WHAT CAN BE DONE TO HELP IN THE LIVES OF SUCH CHILDREN BY THEIR FAMILIES AND SOCIETY? I think believing in them and their abilities. Autistic people, whether they are on the spectrum or able to engage in typical behaviours or not, have a lot to give. I think the start is to never discount anyone’s potential just because they are unconventional, and I would say people on the spectrum are the best examples of people who are magnificent when you allow them to be.
Samantha Willatgamuwa Fernando – Parent
Q WHAT ARE SOME OF THE FIRST SIGNS YOU NOTICED THAT YOUR CHILD WAS AUTISTIC? My son was 2 years and 8 months old when I noticed that he stopped playing, and lost the liking and skills to play with simple toys such as rings on sticks, puzzles etc, more noticeably he stopped speaking the few words he did speak. He also started banging his head on the wall. In hindsight, he didn’t smile and wanted to interact as much as well. I noticed that there was a sudden difference in a short time span but didn’t know it was Autism….this was 18 years ago.
Q WHAT ARE SOME OF THE CHALLENGES YOU AS PARENTS HAVE HAD TO FACE ON AN EVERYDAY BASIS AND IN THE LONG TERM? On an everyday basis initially, it was getting a diagnosis, getting a functional assessment for my son to understand what needed to be done in terms of therapy, everyday building skills and how I can interact and build simple skills in myself as a parent and the primary stakeholder. All this took some valuable time 18 years ago. Then it was finding a school that would not only give him ’just a seat’ and keep him but take responsibility for his progress. My son is now 21 years old, and the struggle still continues to find vocational training and employment for a young man with middle-of-the-spectrum (moderate) Autism who will only verbalise his needs. Finding safe supported employment and vocational training to build on his strengths and having a plan for my child when we are no more are the long-term challenges I face as a parent now.
Q WHAT IS YOUR ADVICE TO YOUNG PARENTS IN A SIMILAR SITUATION? If you notice any difference in behaviour or when your child interacts with you or peers or if speech is delayed make sure to go to your paediatrician/LRH/ Ayati Centre and check it out. I remember people telling me ‘he is a boy and boys speak later.’Whatever your circumstance just don’t wait - go and get your child assessed as soon as possible. There are also several parent support private groups online to which you can write your concerns and get feedback from parents/therapists who have experienced similar situations. ( In my time this kind of sharing and support was not available) These kids should be treated as equal citizens having equal rights with equal access to all the facilities and benefits that peers also have. It is a fundamental right as a citizen of Sri Lanka.
Q WHAT ARE SOME OF THE DIFFICULTIES OR CHALLENGES SUCH CHILDREN FACE IN SRI LANKA? Getting a diagnosis with a functional assessment and continuous skill development. Finding resources/therapists. Finding schools that can provide adequate support - currently, one or two teachers provide support for a class. Suitable programmes and resources for vocational skill development. Provision of employment with support and monitoring.
Q WHAT CAN BE DONE TO HELP IN THE LIVES OF SUCH CHILDREN BY THEIR PARENTS AND SOCIETY? Inclusion of our children starting from our own homes in as many activities that they can participate in as members of society. Expecting our children to carry out simple daily living tasks and enabling them to do so. As a responsible society, it is important to accept persons with disability by being a friend and providing opportunities for friendship and jobs. Moving beyond our own comfort zones and acceptance is more than saying hello and going to events that promote inclusion.
Q WHERE CAN PEOPLE TURN TO FOR HELP – ARE THERE GROUPS OR CENTRES? There are several privately run awareness groups on Facebook and WhatsApp or people can go to the disability centres AYATI in Ragama/ Chitra Lane in Colombo 5.
By Kshalini Nonis
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