DHAKA, Bangladesh, 1 April (IPS) – When is too much Autism awareness not enough? This mindset repeats every April as we approach World Autism Day on April 2, and parents reach out to me after reading enthusiastic and meaningful articles and news – the which is really harmful and hurtful.
In 2008, together with a number of dedicated parents and professionals, we began an effort to raise awareness about Autism Spectrum Disorder (ASD). To that end, we came together to form an advocacy, capacity building, and research-based nonprofit (Shuchona Foundation) founded in 2014.
Today, we feel our work in Bangladesh, through effective national and international partnerships with parents and equally dedicated professionals, has impacted the country. . Professional training, awareness-raising activities and inclusion in social situations are provable. The best part is that parents no longer see themselves as victims of fate’s punishment for having a child with a disability.
Despite all efforts to educate the people of many sectors in our country, including the development of a detailed National Strategic Plan, it is amazing how blatantly disregarded the truth is. Therefore, I asked one parent, a former executive director of the Shuchona Foundation and now a member of our board, to share her thoughts. Nothing speaks the truth louder and stronger than someone who is suffering from discriminatory, hurtful and unethical behavior than a parent who hears it over and over again.
Here is a quote from what I learned from Zain Bari Rizvi
If I had one Taka (Bangladesh currency) for every time someone said: ‘But it looks so normal’, when I shared that my son is on the autism spectrum, I would be able to take a break. Early retirement at a villa in the Maldives. !
I don’t blame people who are mostly well-intentioned and who lack awareness when widely read, and the newspapers that circulate have chosen to use photographs of children with Downs Syndrome to illustrate children with Downs Syndrome. What autism looks like. Autistic features cannot be captured with a still photograph, and most individuals with ASD look like any other typical peer.
This type of misrepresentation is not innocent and carries the potential to cause harm.
Deliberately associating congenital genetic conditions with mental retardation will mislead readers into thinking they are alike. This can also prevent parents and carers of children with ASD from seeking early intervention services that are likely to improve outcomes because they will have a false sense of comfort that their child ‘looks normal’, Also known as neuropathy.
There is no such thing as a true face of Autism because it is such a common disorder that it is not the norm. It still holds true to this famous quote by Dr. Stephen Shore, an autism advocate and autistic: “If you meet someone with autism, you have met someone with autism.”
I am neither a psychologist nor an expert, but as a parent it is privileged to be educated and use my spare time and resources to research, misrepresent This inaccurate and harmful image makes me frustrated and annoyed.
Bangladesh has made significant strides in advocacy and policy change on Autism due to the extraordinary efforts of the leadership team at the Shuchona Foundation. The organization has relentlessly been at the forefront of education and opening people’s minds and hearts to what it entails on the Autism Spectrum. Because of our dedication to this cause, we, in Bangladesh, finally had a discussion about what Autism is, while acknowledging and accepting the differences in our children with Autism. century. We also have access to world-class services such as early intervention such as ABA therapy and parent/carer involvement without shame or guilt.
And if there’s one thing I’ve learned working closely with the Shuchona Foundation, the key to making a difference is to “acknowledge that people won’t always get it right, but to see if they want to learn to do it right.” or not”.
As World Autism Day approaches 2nd April, my humble request to journalists and mainstream media is to do your duty in imparting knowledge and information. medically relevant and factual information. Learn from your mistakes and make sure your story and portrayal are accurate because the media has the power to help or harm.
As I watched my loyal, tough, and likable ASD child grow up in a typical school and social environment thanks to childhood interventions and therapies, I shudder to think to what can become our reality if I pay attention to what the pictures are about. Autism looks like in the Bangladeshi media.
I hope people reading this take notice. Autism is a complex state of being and no two autism are alike. Every time I meet and spend time with a person with Autism, I am amazed at how unique, creative and gift they are to the world. I want to change the way we treat people we consider different, not who they are.
For centuries, all we did was find creative ways to separate the majority from the few. I hope two years of a global pandemic will finally make us realize that when one group of people mistreats another, whether through military, financial or social power, we all suffer. not just those we discriminate against.
Saima Washed Hossain is Advisor to the Director-General, World Health Organization (WHO), on Mental Health and Autism. She is the Chairperson, National Advisory Committee on Autism and NDDs, Bangladesh, and President, Shuchona Foundation. She is an expert in Clinical Psychology and an expert in neurodevelopmental disorders and mental health. Her efforts have led to changes in international awareness, policy and programmes, and the adoption of three international resolutions at the United Nations and WHO.
Zain Bari Rizvi is a Board Member of the Shuchona Foundation, a Finance and Operations professional, a passionate advocate for people with Autism, and a mother of two.
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