When is too much Autism awareness still not enough? This thought recurs every April as we near World Autism Day on April 2, and parents reach out to me after reading enthusiastic and well-meaning news and journal articles – which are actually harmful and hurtful.
In 2008, along with a few dedicated parents and professionals, we began our effort to raise awareness around Autism Spectrum Disorder (ASD). We eventually came together to form an advocacy, capacity-building, and research-based not-for-profit organization (Shuchona Foundation) established in 2014.
Today, we feel our work in Bangladesh, through effective national and international partnerships with equally dedicated parents and professionals, has impacted the country. Professional training, extensive awareness activities, and inclusion in social situations are demonstrable. The best part is that parents no longer view themselves as victims punished by fate for having a child with a disability.
Despite all the efforts in educating people in the many sectors of our country, including the formulation of a detailed National Strategic Plan, it is shocking to still find blatant disregard for the truth. I have, therefore, requested a parent, a former Shuchona Foundation head of operations and now a member of our executive board, to share her thoughts. Nothing speaks the truth louder and stronger than the person who has been on the receiving end of the discriminatory, hurtful, and unethical behaviour than the parent who hears it over and over again.
Here below excerpts of what I learned from Zain Bari Rizvi
If I had a Taka (Bangladesh currency) for each time someone said: ‘But he looks so normal,’ when I share that my son is on the Autism Spectrum, I would have been able to take early retirement at a villa in the Maldives!
I do not blame these mostly well-meaning people and their lack of awareness when widely read, and circulated dailies choose to use photos of children with Downs Syndrome to illustrate what children with Autism look like. Autistic traits cannot be captured with a still photograph, and most individuals with ASD look just like any other typical peer.
This sort of misrepresentation is not innocent and borders on dangerously harmful.
Deliberately associating a congenital genetic condition with a neurodevelopmental one will confuse the readers into thinking they are the same. This may also prevent parents and caregivers of children with Autism from seeking early intervention services that could potentially improve outcomes because they will have the false sense of comfort that their child ‘looks normal’, aka neurotypical.
There is no one true face of Autism because it is a not-one-size-fits-all spectrum disorder. It stays true to this famous quote by an Autism Advocate and Autistic person, Dr Stephen Shore: “If you’ve met one individual with autism, you’ve met one individual with autism.”
I am not a psychologist nor an expert, but as a parent who had the privilege to be educated and used my spare time and resources to do research, this incorrect and harmful visual misrepresentation enrages and upsets me.
Bangladesh has made considerable strides in Autism advocacy and policy changes due to extraordinary efforts by the leadership team at Shuchona Foundation. The Foundation has selflessly spearheaded the job of educating and opening the minds and hearts of people about what it entails to be on the Autism Spectrum. Because of their single minded dedication to this cause, we, in Bangladesh, are finally having a discourse on what Autism is and acknowledge and accept the differences in our children with Autism. We also have access to world-class services like early interventions such as ABA therapy and parent/caregiver engagement without shame or guilt.
And if there is one thing I learnt working closely with Shuchona Foundation, the key to making a difference is “to acknowledge that people will not always get it right but to look out for whether they want to learn to make it right”.
As World Autism Day on April 2 nears, my humble request to journalists and mainstream media is to do your duty of imparting factual and medically sound knowledge and information. Learn from your mistakes and ensure your stories and visual representations are accurate because media has the power to help or harm.
As I watch my feisty, opinionated and uber affectionate ASD child thrive in a typical school and social setting thanks to early childhood interventions and therapy, I shudder at the thought of what could have been our reality if I had paid heed to the photos of what Autism looks like in Bangladesh media.
I hope those reading this will take heed. Autism is a complex state of being, and no two autistics are alike. Every time I meet and spend time with someone with Autism, I am amazed at how unique, creative, and what a gift they are to the world. I want to change how we treat those we deem to be different, not change who they are.
For centuries all we have done is find creative ways to separate the majority from the minority. I hope the two years of the global pandemic will finally make us realize that when one group of people mistreat another, be it through military, financial or social power, we all suffer, not just the ones we discriminate against. (IPS Article)
Saima Wazed is Advisor to the Director-General, World Health Organization (WHO), on Mental Health and Autism. She is Chairperson, National Advisory Committee for Autism and NDDs, Bangladesh and Chairperson, Shuchona Foundation. Her efforts have led to international awareness, policy and program changes, and the adoption of three international resolutions at the United Nations and WHO.
Zain Bari Rizvi is a Board Member of Shuchona Foundation, an Operations and Finance professional who is a passionate advocate for people with Autism and a mother of two children.
