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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 number of devoted dad and mom and professionals, we started our effort to lift consciousness round Autism Spectrum Dysfunction (ASD). We ultimately got here collectively to kind an advocacy, capacity-building, and research-based not-for-profit group (Shuchona Basis) established in 2014.
As we speak, we really feel our work in Bangladesh, by efficient nationwide and worldwide partnerships with equally devoted dad and mom 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 now not view themselves as victims punished by destiny for having a toddler with a incapacity.
Regardless of all of the efforts in educating individuals 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, due to this fact, requested a dad or mum, a former Shuchona Basis head of operations and now a member of our govt 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 dad or mum who hears it over and over.
Right here beneath excerpts of what I realized from Zain Bari Rizvi
If I had a Taka (Bangladesh forex) for every time somebody mentioned: ‘However he seems to be so regular,’ after I share that my son is on the Autism Spectrum, I might have been capable of take early retirement at a villa within the Maldives!
I don’t blame these principally well-meaning individuals and their lack of information when extensively learn, and circulated dailies select to make use of photographs of youngsters with Downs Syndrome as an instance what kids with Autism appear like. Autistic traits can’t be captured with a nonetheless {photograph}, and most people with ASD look identical to every other typical peer.
This form of misrepresentation shouldn’t be 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 increasingly additionally stop dad and mom and caregivers of youngsters with Autism from in search of early intervention companies that would probably enhance outcomes as a result of they are going to have the false sense of consolation that their baby ‘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 individual, Dr Stephen Shore: “When 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 dad or mum 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 because of extraordinary efforts by the management staff at Shuchona Basis. The Basis has selflessly spearheaded the job of teaching 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 kids with Autism. We even have entry to world-class companies like early interventions similar to ABA remedy and dad or mum/caregiver engagement with out disgrace or guilt.
And if there may be one factor I learnt working intently with Shuchona Basis, the important thing to creating a distinction is “to acknowledge that individuals won’t all the time get it proper however to look out for whether or not they wish to study 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 ability to assist or hurt.
As I watch my feisty, opinionated and uber affectionate ASD baby thrive in a typical college and social setting due to 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 this may 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 completely different, not change who they’re.
For hundreds of years all we’ve got completed 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 navy, monetary or social energy, all of us endure, not simply those we discriminate towards.
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 individuals with Autism and a mom of two kids.
IPS UN Bureau
© Inter Press Service (2023) — All Rights ReservedUnique supply: Inter Press Service
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