A group of 50 people held the inaugural Autistic Pride Day gathering in Kuala Lumpur today to shed light and counter stigma about the difficulties faced by people with autism.
Today’s event sparked hope that community-driven efforts such as this will improve society’s attitude towards autism.
However, the shift in perceptions of the autistic community cannot be facilitated by community efforts alone.
Autism Inclusiveness Direct Action Group (Aida) founder Beatrice Leong said there was a “default belief” that comes with autism due to the lack of representation involved at a higher level.
In urging for better policies for the community, she also called for more engagement with people who have actual experiences of living with autism.
“How can one talk about autism without autistic people? If you look at the committees formed, show me one that consulted us, autistic people, in its planning.
“We are usually in the back end, we have to accept and make do,” she told Malaysiakini.
Delayed National Autism Council
Leong also questioned why there was a delay in setting up the proposed National Autism Council, which has not yet seen the light of day despite being announced mid-last year.
Health Minister Dr Zaliha Mustafa said on March 21 that the ministry was drafting a cabinet paper with considerations to form a National Autism Council.
However, 29-year-old activist Adieka Amirul said the government tended to consult the National Autism Society of Malaysia (Nasom) instead of engaging with others within the autism community.
“Nasom openly advocates for Applied Behaviour Analysis which is criticised by autistic individuals because it gives the perspective that autism can be treated or cured.
“We are disappointed that the government is willing to cooperate with Nasom rather than us.
“I would like for the government to hear other sides, from NGOs such as Aida, Project Lily, Autsome Kuching, and United Voices,” he said.
‘Disease’ to ‘difference’
Adieka added that Autism Pride Day aimed to shift the views of autism from being a “disease” to just a “difference” in members of society, emphasising the innate potential in all human phenotypic expressions and celebrating neurodiversity.
“We feel stabbed when people believe that autism can be ‘cured’ or ‘treated’. It is as if society doesn’t need us.
“We are here to demonstrate to allistic people - those not on the autism spectrum - that autistic people are unique individuals who should not be seen as cases for treatment.
“‘Autistic pride’ points out that autistic people have always been important to human society.
“It is a form of neurodiversity, most of the challenges autistic people face come from other people’s attitudes about autism and a lack of support and accommodation rather than being essential to the autistic condition,” he said in his speech at the event.
Adieka said people might have thoughts about the word ‘pride’ in Autistic Pride Day, highlighting that it was a day to recognise the importance of pride for autistic people and its role in bringing about positive changes in the broader society.
Infinity symbol
Autistic Pride Day was first celebrated in 2005 by United Kingdom-based Aspies For Freedom (AFF), who selected June 18 because it was the birthday of the group’s youngest member at that time.
The symbolic representation of autism is an infinity symbol with a range of colours of the rainbow.
This is closely tied to the concept of the ‘autism spectrum’ to visually represent the range of autism symptoms and individuals with autism’s abilities and challenges.
Meanwhile, 24-year-old Jerry Tong Khai Whei said that as an autistic individual, it is difficult for members of the community to find job opportunities.
“I don’t feel like I get enough support from the government. I now have an administrative assistant job, but few positions accommodate autistic individuals.
“It was difficult finding a job. More opportunities and programmes should be introduced to give us a chance to prove ourselves worthy to fit into society,” he told Malaysiakini. - Mkini
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