Autism Not A Tabooed Condition But A Way Of Life

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The Content Forum advocates for greater representation of Persons with Disabilities (PWDs) in media and online content

In Malaysia, one in 68 newborns are diagnosed with Autism Spectrum Disorder (ASD) annually, averaging about 9,000 babies per year, according to the National Autism Society of Malaysia (Nasom). With these statistics in mind, it is crucial that awareness about ASD is adequately raised in public. This includes having better representation of autism in the media. While there has been an increase in content featuring autistic people, many such portrayals are still one-dimensional and rely on stereotypes.

However, among today's digital natives, there has been an uptick in discussions about autism's acceptance and inclusion on various social media platforms. TikTok with its 1.7 billion users, has been a flashpoint for discourse on people who see, hear, and interpret the world differently.

On this one platform alone, the hashtag ‘autism’ has over 38,000 posts with over 200 million views. It is clear that platforms like these are becoming crucial spaces for young users to share their creative expressions, while also giving a voice to the autistic community. However, more can and must be done to help create a safer space for those living with ASD both online and offline.

As an organisation championing self-regulation and inclusivity, the Communications and Multimedia Content Forum of Malaysia (Content Forum) has actively pushed conversations surrounding the representation of persons with disabilities (PWDs) in content across all mediums. The Content Forum also overlooks the Content Code 2022 guidelines, a useful source outlining best practices and ethical standards for the creation and curation of content for all, including those on the autistic spectrum.

To ensure that people with disabilities (PWDs) have equal access to information, a new provision on content accessibility for PWDs was added in 2022. This provision states that content creators should make reasonable efforts to deliver content and information in accessible formats and using accessible technologies.

Dr. Aida Mokhtar Associate Professor,
Department of Commmunication of the
International Islamic University Malaysia As a member of the Content Forum, Assoc. Prof. Dr Aida Mokhtar from the Department of Communications, International Islamic University Malaysia (IIUM) has been an advocate for proper media representation of autism and those living with it. She is currently the Coordinator of the Disability Services Unit (DSU), Office of Deputy Rector (Student Development and Community Engagement), IIUM, and the IIUM Special Parents Group, a support group for IIUM employees who have children with disabilities.

She said, “I believe that more movies, television series, advertisements and other media content should be made featuring autistic people as main characters who are included in society in a positive way like the American television series The Good Doctor. This way, not only will it be entertaining but the content will be able to help educate society in terms of how to include, treat and empathise with autistic people.”

Dr Aida added that such content should also be created by autistic people to portray a deeper understanding of autism and one that accurately depicts their situation and difficulties from a first person’s point of view. It is also crucial to feature them as the lead character and make them the protagonists or hero, rather than just a side character. This way, not only does it shed positive light on those on the autistic spectrum, but it also gives them hope and teaches the public about inclusion and acceptance.

On the local front, there are a few productions that feature autism such as Guang, a Malaysian movie that showcases how the hidden musical talents of an autistic young man is uncovered amidst trials and tribulations. There is also the local production of Redha back in 2016 that focuses on the challenges of bringing up a child with autism and Kerana Cintaku Searah, along with various other television commercials featuring autistic people.

“Most media content nowadays seem to be more focused on challenges faced by PWDs along with stereotypes linked to them. I believe that media content should instead demonstrate how the public can include PWDs in society by adopting the social model of inclusion and accommodating them so that they too can live independently. There should be positive angles to the stories told in content created about them,” she said.

In terms of social media representation for autistic people, local influencers and celebrities have also played a crucial role by raising awareness about it. For example, local celebrity Zarina Zainuddin shares stories about her autistic twin sons, as with Adam’s Autism Family on social media. This has not only helped followers and fans grasp a better understanding of what parents and families with autistic children go through, but also helps other families dealing with autistic children of their own feel supported and less alone.

“From the postings we do empathise with the great challenges these families go through and I think there is a better understanding of what autism is but people should also note that autism is a spectrum and not every autistic child goes through the same experiences as another. Not everyone with autism is alike,” Dr Aida highlighted.

With more awareness and accessibility to content about autism, parents with autistic children no longer need to feel alone, embarrassed or view this disorder as a taboo. Over the years, cultural beliefs, stigma and a lack of understanding of autism has caused numerous families to hide their child’s condition or let it fly under the radar instead of seeking help. Aside from this, special schools, therapy or even support services may also prove to be too costly especially for the lower income groups. This leads to families refusing to get support, which indirectly causes a further lack of understanding and prevents them from educating themselves about autism.

As such, it is crucial for information and content created about autism and PWDs to be readily available and easily for everyone, including the rural communities and the lower income groups to consume. Despite already having lots of content about autism out there, most autistic people or even PWDs face difficulties in accessing them.

“There have been several technological tools invented and innovated but PWDs may have issues accessing them due to their lack of education or financial constraints. They need someone to teach them how to use it as not many PWDs go to universities and some do not even come from well-to-do families or educated families,” she said, and added that hopefully, with more awareness, autistic people and other PWDs will be able to gain more access to content.

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