DHAKA, Bangladesh, Mar 31 (IPS) – On the event of World Autism Consciousness Day on 2 April 2023, IPS is republishing ‘When Is Too A lot Autism Consciousness Nonetheless Not Sufficient?’ When is an excessive amount of Autism consciousness nonetheless not sufficient? This thought recurs each April as we close to World Autism Day on April 2, and oldsters attain out to me after studying enthusiastic and well-meaning information and journal articles – which are literally dangerous and hurtful.
In 2008, together with a couple of devoted mother and father and professionals, we started our effort to boost consciousness round Autism Spectrum Dysfunction (ASD). We finally got here collectively to type an advocacy, capacity-building, and research-based not-for-profit group (Shuchona Basis) established in 2014.
At present, we really feel our work in Bangladesh, by way of efficient nationwide and worldwide partnerships with equally devoted mother and father and professionals, has impacted the nation. Skilled coaching, intensive consciousness actions, and inclusion in social conditions are demonstrable. The very best half is that folks not view themselves as victims punished by destiny for having a baby with a incapacity.
Regardless of all of the efforts in educating folks within the many sectors of our nation, together with the formulation of an in depth Nationwide Strategic Plan, it’s surprising to nonetheless discover blatant disregard for the reality. I’ve, subsequently, requested a mum or dad, a former Shuchona Basis head of operations and now a member of our government board, to share her ideas. Nothing speaks the reality louder and stronger than the one that has been on the receiving finish of the discriminatory, hurtful, and unethical behaviour than the mum or dad who hears it time and again.
Right here under excerpts of what I realized from Zain Bari Rizvi
If I had a Taka (Bangladesh forex) for every time somebody stated: ‘However he seems to be so regular,’ after I share that my son is on the Autism Spectrum, I’d have been in a position to take early retirement at a villa within the Maldives!
I don’t blame these largely well-meaning folks and their lack of understanding when extensively learn, and circulated dailies select to make use of photographs of kids with Downs Syndrome as an example what kids with Autism seem like. Autistic traits can’t be captured with a nonetheless {photograph}, and most people with ASD look similar to every other typical peer.
This type of misrepresentation is just not harmless and borders on dangerously dangerous.
Intentionally associating a congenital genetic situation with a neurodevelopmental one will confuse the readers into considering they’re the identical. This may occasionally additionally forestall mother and father and caregivers of kids with Autism from searching for early intervention providers that might doubtlessly enhance outcomes as a result of they may have the false sense of consolation that their little one ‘seems to be regular’, aka neurotypical.
There isn’t a one true face of Autism as a result of it’s a not-one-size-fits-all spectrum dysfunction. It stays true to this well-known quote by an Autism Advocate and Autistic particular person, Dr Stephen Shore: “In case you’ve met one particular person with autism, you’ve met one particular person with autism.”
I’m not a psychologist nor an skilled, however as a mum or dad who had the privilege to be educated and used my spare time and sources to do analysis, this incorrect and dangerous visible misrepresentation enrages and upsets me.
Bangladesh has made appreciable strides in Autism advocacy and coverage adjustments as a result of extraordinary efforts by the management group at Shuchona Basis. The Basis has selflessly spearheaded the job of training and opening the minds and hearts of individuals about what it entails to be on the Autism Spectrum. Due to their single minded dedication to this trigger, we, in Bangladesh, are lastly having a discourse on what Autism is and acknowledge and settle for the variations in our youngsters with Autism. We even have entry to world-class providers like early interventions reminiscent of ABA remedy and mum or dad/caregiver engagement with out disgrace or guilt.
And if there’s one factor I learnt working intently with Shuchona Basis, the important thing to creating a distinction is “to acknowledge that individuals is not going to at all times get it proper however to look out for whether or not they wish to be taught to make it proper”.
As World Autism Day on April 2 nears, my humble request to journalists and mainstream media is to do your responsibility of imparting factual and medically sound information and data. Be taught out of your errors and guarantee your tales and visible representations are correct as a result of media has the facility to assist or hurt.
As I watch my feisty, opinionated and uber affectionate ASD little one thrive in a typical college and social setting because of early childhood interventions and remedy, I shudder on the considered what might have been our actuality if I had paid heed to the photographs of what Autism seems to be like in Bangladesh media.
I hope these studying it will take heed. Autism is a fancy state of being, and no two autistics are alike. Each time I meet and spend time with somebody with Autism, I’m amazed at how distinctive, artistic, and what a present they’re to the world. I wish to change how we deal with these we deem to be totally different, not change who they’re.
For hundreds of years all we’ve achieved is use artistic methods to separate the bulk from the minority. I hope the 2 years of the worldwide pandemic will lastly make us understand that when one group of individuals mistreat one other, be it by way of navy, monetary or social energy, all of us undergo, not simply those we discriminate in opposition to.
Saima Wazed Hossain is Advisor to the Director-Common, World Well being Group (WHO), on Psychological Well being and Autism. She is Chairperson, Nationwide Advisory Committee for Autism and NDDs, Bangladesh and Chairperson, Shuchona Basis. She is a specialist in Medical Psychology and an skilled on Neurodevelopment issues and psychological well being. Her efforts have led to worldwide consciousness, coverage and program adjustments, and the adoption of three worldwide resolutions on the United Nations and WHO.
Zain Bari Rizvi is a Board Member of Shuchona Basis, an Operations and Finance skilled who’s a passionate advocate for folks with Autism and a mom of two kids.
IPS UN Bureau
© Inter Press Service (2023) — All Rights ReservedOriginal source: Inter Press Service
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