Neurodivergent people in Indonesia fight stigma


An internet user browses, a website that aims to raise awareness on neurodiversity in Indonesia. (By Priskila Graceana)

Singer Billie Eilish, actor Tom Cruise, actress Emma Watson, and climate activist Greta Thunberg are all well known globally for different reasons, but they do share at least one thing in common: they’re neurodivergent. Cruise was diagnosed with dyslexia at the age of seven, Watson with attention-deficit/hyperactivity disorder (ADHD), while Eilish has Tourette’s syndrome and Thunberg is in the autism spectrum. 

While public awareness of neurodiversity has been slowly increasing, many neurodivergent people in different parts of the world are still struggling from the stigmas attached to it. 

Singapore-based journalist of Indonesian national Anisa Menur Maulani, 34, has felt that there is something different about her since a very young age. 

“I don’t think there’s anything strange about me. But people around me always say, ‘Why is that so? You’re weird!’” she said recently.

People keep commenting on her hand movement, detailed obsession with a movie, and the way she avoids eye contact when having a conversation with someone. 

“I feel dizzy when I make eye contact for too long while having a conversation,” she said. 

Anisa said she can understand the conversation even when she looks at the hands or cheeks of the other person. For her, the other’s facial expressions speak louder about one’s emotions than words and eyes. 

At one point, she became increasingly interested in reading a book about autism, although she didn’t get to see a psychologist to consult due to various constraints. Until recently, at the age of 33, she was only able to get access to a professional after she had a stable job and live independently.

“After the doctor diagnosed me, I finally understood why I can’t do something that most people can do. Then, I know I am autistic. This fact slowly made me gain confidence, and I realised that I had to stop thinking that I’m a failure.”

Dian Soraya, 36, a UX lead in an e-commerce company in Indonesia, shared a similar experience. Aya, as she’s fondly called, found hints that she was dyslexic after she saw an advertisement about a dyslexia association and subsequently took an online test.  

“I have always felt that there is something unusual about me. I am a creative individual and have good problem-solving skills. But at the same time, I find it difficult to put these ideas into words and I easily forget things. I used to think that I was smart but also stupid at the same time,” she said in an interview recently.

That test shows that Aya has a 90% chance of being dyslexic. But an online test is available only to give people cues about a condition in a person, but not an accurate diagnosis. 

“After I took the online test, I went to a dyslexia association in Indonesia and met professionals just to confirm my condition. Even though I’m pretty sure that I’m dyslexic I don’t want to self-diagnose my condition,” Aya said.

Anisa and Aya did not stop there. Following their respective diagnoses, they searched further and found a community that advocates neurodiversity.

While Anisa was set to educate others about neurodiversity, Aya took the discussion on neurodiversity to a larger scale. She invited her friends at an educational organisation called Anotasi to bring this discussion to a wider audience, and the idea resulted in a project called Neurodiversity by Anotasi.

The community discusses from A to Z about neurodiversity, aiming to shed light on the topic, challenge existing stigmas, and promote inclusivity in Indonesia, a country in which minorities remain underrepresented and vulnerable to discrimination. 

Neurodivergent people struggle with stigmas, ignorance 

The term neurodiversity was coined by an autistic sociologist, Judy Singer, in the late 1990s to describe how diverse we are as human beings from a neurological perspective. The term neurodiversity emphasises that certain developmental disorders are normal variations in the brain and that people with such variations also have particular strengths.

Nathaniel W. Hawley, a neurodiversity specialist who is also the head of community and educational impact at Exceptional Individuals based in the United Kingdom, explains about what neurodiversity is here.

Unfortunately, neurodiversity remains attached to stigmas. In some countries, the majority of the population still think that dyslexia, autism, and ADHD are diseases that should be cured.

As an Indonesian living in another country, Anisa felt a very significant difference in reactions from people when she said she is autistic. 

“There are significant differences in how people react to that information. In Singapore, when I say I am autistic, most people will say, ‘Thank you for letting me know. Is there any way I can help you?

But back home, when Anisa explained to people that she was autistic, the response she got was not that good.

“When I disclose my identity as an autistic individual, people in Indonesia mostly say, ‘But you don’t look autisticor ‘That’s impossible!’ or even worse, I’ve even seen one of my autistic acquaintances disclose their identity to another person and that person immediately accuses You lied! Because you don’t look like another autistic person that I know.’ “

Hawley said that societies in certain countries like the UK can be quite far ahead in understanding neurodiversity compared to other countries. However, it cannot be said that everybody sees neurodiversity in a positive light. 

Hawley said that in some countries, the word “autism” is translated into “crazy” or “alone”. 

A recent study from the British Medical Bulletin shows that 2 out of 10 people we know are probably neurodivergent.

Data visualization by Disya Shaliha

The number may not represent the reality because there are no comprehensive statistics on neurominorities. Some countries don’t even have data on neurodivergence in their respective areas.

Self advocacy, one step at a time

Stigma and ignorance remain among the biggest obstacles that face neurodivergent people in Indonesia. It is difficult to just collect reliable data on the neurodivergent population in Indonesia due to such obstacles, among others. 

Through their respective activism, Anisa and Aya aim to raise public awareness so that more people understand their perspective and the way they look at the world.

Other people’s understanding is key to neurodivergent people to be able to fit in in society. “It’s not easy for neurodivergent people to accept themselves and their uniqueness. They need support and enough space to understand that they’re different,” Aya said.

In her social media campaigns, Anisa shares her voices and perspective on different issues, hoping that the wider public will get a better understanding of people in the autism spectrum. 

“No matter how small [the movement] is, it can slowly turn into a big wave. We know that it’s not widely discussed yet, but we remain optimistic that the public will finally pay attention to and understand this movement,” Aya said.