Late autism diagnosis and the path to acceptance in Malaysia

[MALAYSIA] For many adults, learning that they are autism later in life can be a watershed moment of self-acceptance and strength. According to consultant clinical psychologist Prakash Ravindran, a diagnosis is not about discovering something wrong; rather, it is about better understanding oneself.

“The process of diagnosis often involves comprehensive assessments, including interviews, behavioural observations, and sometimes input from family members or partners,” Prakash notes. “This holistic approach ensures that the diagnosis is accurate and meaningful, tailored to the individual’s unique experiences.”

"A diagnosis should not be rushed. It promotes self-awareness and clarity. Individuals diagnosed with autism can also interact with others who have been on a similar road, read personal tales, listen to autistic voices, and reflect," says Prakash in an email interview from Kuala Lumpur. Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder affecting the brain.

Recent research has highlighted the diverse ways autism manifests in adults, from sensory sensitivities to distinctive cognitive strengths like pattern recognition or attention to detail. However, societal understanding often lags behind, leaving many undiagnosed or misunderstood. “This gap in awareness means countless adults may have spent years feeling ‘different’ without knowing why,” Prakash adds.

Prakash, 36, believes that one of the most important benefits of a diagnosis is the potential to connect with support networks and communities that share similar experiences.

"Many find comfort in connecting with peer groups, which can be validating and empowering." Prakash has worked with over ten adults with autism over the last decade, and many of them have felt that receiving a late diagnosis has been a wonderfully validating experience.

"Interestingly, the rise of social media and online communities has made it easier for adults to explore autism informally before seeking a formal diagnosis," he says. "Platforms like TikTok and Reddit have become spaces where people share relatable experiences, reducing the isolation many feel before diagnosis."

"For some, it clarifies lifelong struggles or distinctions. It enables students to better understand and appreciate their own identities, as well as advocate for themselves." He understands that myths and stigma still exist.

"Autism is not a negative trait; it is simply a unique way of viewing the world. Instead of focusing on deficits, we should embrace a strengths-based understanding of neurodiversity," the researcher suggests. Prakash believes that changing public perceptions is critical to building a more inclusive society.

“Employers, educators, and policymakers must recognize that neurodiverse individuals contribute uniquely to workplaces and communities,” he argues. “For instance, some autistic adults excel in roles requiring precision, creativity, or systematic thinking—traits that are invaluable in fields like technology, engineering, or the arts.”

“We need to educate people on what autism is (and isn’t), amplify autistic voices, and highlight their diverse talents and abilities. Just like Malaysia’s cultural diversity enriches our society, embracing neurodiversity brings invaluable perspectives and fosters more compassionate communities.”

He also tackles common misconceptions about autism, such as the belief that it mainly affects children.

Many people fail to understand that children with autism grow up to be autistic adults. Autism is not one-size-fits-all, but rather a continuum with diverse qualities and experiences.While some may feel that autistic people lack empathy, it is important to note that they often experience deep empathy and express it in unique ways.There is also a misconception that only those who exhibit evident difficulties can be autistic, when in fact, many successful and talkative people are on the spectrum. Many autistic persons live full, meaningful lives that frequently conceal their daily internal challenges.

Susan Boyle, a British singer, was diagnosed with Asperger's syndrome, a subset of ASD, as an adult, as reported by www.healthcentral.com.

Susan Boyle, a British singer, was diagnosed with Asperger's syndrome, a subset of ASD, as an adult, as reported by www.healthcentral.com. The singer, who rose to popularity on Britain's Got Talent, has spoken about how the diagnosis helped her gain clarity and self-awareness.

Prakash emphasizes the necessity of having strong support systems, whether from family, friends, or at work.

Social, emotional, and workplace support are critical. This includes participating in peer support groups, communicating with others who have been through similar experiences, and having family and friends who respect boundaries and appreciate sensory demands.

"Seeking guidance from a mental health professional well-versed in autism can also help with emotional regulation, anxiety and trauma," according to Prakash.

He adds that the trend of adult autism diagnosis is on the rise with more Malaysian adults interested in getting assessed over the past four years.

“Increased awareness and reduced stigma are driving this shift,” Prakash explains. “But accessibility remains an issue—many diagnostic services are concentrated in urban areas, leaving rural communities underserved. Telehealth and online resources are helping bridge this gap, but systemic improvements are needed.”

Bridging the gap

While autism awareness is growing, securing meaningful employment remains an uphill battle for many adults with autism, says National Autism Society of Malaysia (Nasom) chairman Julian Wong, 45.

Many individuals with autism remain unemployed or underemployed despite possessing valuable skills.

“Misconceptions, limited job opportunities, a lack of workplace accommodations, social communication challenges, inadequate support systems and stigma create significant barriers.”

Wong emphasizes the need of creating inclusive career possibilities for people with autism. Companies can do this by implementing awareness programs, providing job coaching help, adapting flexible work environments, and collaborating with non-governmental organizations.

“Government incentives and corporate social responsibility (CSR) initiatives can further encourage businesses to embrace neurodiversity, fostering autism-friendly workplaces that benefit both employers and employees.”

Beyond employment, Wong highlights the lack of structured support for autistic individuals after they leave school. While some NGOs such as Nasom provide vocational training and life skills programmes, job opportunities remain scarce, he adds.

“Families often struggle due to the absence of structured guidance for long-term care. Greater investment in adult autism services, including job placement, independent living programmes, and lifelong learning, are essential to ensure meaningful support beyond school years.”

Another major issue for families is financial and long-term planning. Many parents are concerned about their autistic child's future care and seek ways to secure their safety.

Parents can use estate planning to create trusts or appoint legal guardians for their children's long-term security. Government help gives some assistance through programs such as Bantuan OKU. However, medical insurance coverage remains a significant barrier because most insurers exclude autism as a pre-existing disease.

“Even high-premium plans often fail to cover essential therapies such as behavioural, speech and occupational therapy, leaving many families struggling to afford necessary care.”

Wong emphasizes the need for a national autism policy in Malaysia, including improved job incentives, vocational training, autism-trained healthcare, insurance coverage, assisted-living support, lifelong financial aid, and stronger anti-discrimination laws.

“Ensuring equal opportunities and long-term, structured support for autistic individuals beyond childhood should be a national priority,” he emphasises.