WORLD Autism Awareness Day is observed on April 2 each year and globally the entire month is designated to edify people everywhere about the challenging lives of persons living with Autism.
Autism is a complex, neurobehavioural condition that includes impairments in social interaction and developmental language alongside hindrances to communication skills. The condition manifests in early childhood and lasts throughout one’s life and is combined with rigid, repetitive behaviours. It is also associated with a range of symptoms and now falls under the broad terminology of Autism Spectrum Disorder (ASD)
You see, these children with autism are perhaps indistinguishable at a first glance. Physically, they seem normal but they have an ability to communicate, socialise and generally learn differently. A child that may be seen throwing tantrum in public may very well be a child who has autism- and is in an unfamiliar or uncomfortable place.
Though the month is designated for Autism Awareness, many people may not have known. In fact, I did not know myself until a friend of mine posted online in observance of the international day (which, by the way, coincided with Easter Monday).
I was curious about the degree of Autism Awareness in Guyana and while asking around, I stumbled upon the ‘Step by Step Foundation’, a local charity organisation and school that deals specifically with children who have autism in Guyana.
The Step by Step Foundation was registered in Guyana as a charity in August 2011 and a month later, the Foundation opened its school in Bagotstown with just five children and three tutors. From then to now, the foundation has grown from strength to strength with the mandate of providing quality educational opportunities to children with autism.
Just recently, I had a chance to chat with the mother of a child who has autism and who is incidentally a senior tutor at the foundation. Her name is Anjalena and she has a 15-year-old son who has autism.
Sharing her story with me, it was difficult for her to keep her emotions at bay. It was easy to understand how life with a child who has autism is not a bed of roses. With the children’s inability to communicate in ways that people are accustomed to, it’s no surprise that many are quick to stigmatise and discriminate.
And while some people are empathetic and understanding there are those who simply are not.
Many years ago, the mother made the decision to integrate her son into the public as best as possible instead of isolating him in fear of what people may think or say. Perhaps this was one of the better decisions she would have made because her 15-year-old has been able to grasp various communicative and social skills. However, that doesn’t mean that his development came without a price. Anjalena has faced tirades from people bashing her son. Some call him “retarded” and others mock him for his inability to communicate effectively and as a mother, these words cut deeper than any laceration could.
Despite this, the most important part of her story, however, was that she is happy to be her son’s mother and she could not be prouder of who he is. Acceptance took a while, but when it did come, it was followed by empathy and maturity.
Like Anjalena, parents of children who have autism are faced with the constant threat of their children being sidelined, bullied or just generally looked down upon. These children, unable to express themselves in ways that are easily understood can become isolated. And undoubtedly, by no means is this reflective of children or people with autism only, but all persons affected by a myriad of ailments or conditions- physical or not- are confronted with this inherent stigma and discrimination.
Awareness is a for-sure way to dispel this stigma and discrimination but opportunities like these must be capitalised upon. We must not and we cannot let any opportunity pass to educate ourselves and to educate others. Be it for autism or any condition, everyone has a right to a life free of stigma and discrimination.
