Juliani’s Journey on being Autistic and of Asian Descent

How do you prefer to identify? (i.e. individual on the spectrum, autistic, person with autism)

That’s a good question. I have never thought about this. I would say I am on the spectrum, or I have autism/Asperger’s.

Childhood in Jakarta

I grew up in Jakarta, Indonesia. As a child, I felt different from my classmates and other children. In kindergarten, I would rather play by myself in the playground. I had a friend that I really loved to play with. She was kind and nurturing. We went to the same schools and were friends from kindergarten to secondary school.

When I was very young and went shopping with my brother and Mom, my brother had to be close to my Mom. He would cry if he could not see her. On the contrary, I frequently wandered off and got lost.

I was more interested in interacting with adults than my peers. Adults could answer my questions knowledgeably and patiently. I also liked reading, which is not in my family’s DNA. When kids my age were playing outside with their peers, I preferred to stay home reading a book. I was fascinated with astronomy and mathematics.

Discovering Autism in Canada

It was not until I came to Canada that I discovered autism. One day, I read an article in the Globe and Mail about a man who has Asperger’s Syndrome. That article caught my attention because the story of his life was similar to mine. He was a research analyst for an investment company, liked mathematics, and didn’t have a broad circle of friends. I was an equity research analyst, I like math, I like numbers, and I am not a social butterfly. I was thinking, “hm… I might have Asperger’s Syndrome.” Then, I googled what Asperger’s Syndrome was. I bought and read a book: The Complete Guide to Asperger’s Syndrome by Tony Attwood. Wow… Each page reminded me of my childhood. That’s what prompted me to get a diagnosis.

 

“Autism is not a familiar condition for most Indonesian people, and some dismiss the concept altogether.”

When I disclosed my condition to my family and relatives, they said I was making it up. It is because of their lack of knowledge that autism is a spectrum and their lack of awareness. Asperger’s syndrome was foreign for most people around me. They only see “classic autism” and think all autistic individuals are mentally deficient/disabled. They still think of autism like the movie Rain Man. When I told them about my diagnosis, they said,

“[I] don’t believe [you]. You’re smart. You can work. Kids with Autism are unable to go to school.”

I felt discouraged. I felt that people didn’t understand me. It was hurtful when someone in the community who works closely with autistic individuals did not support nor hear me.

The intersectionality of being Asian and autistic

When I lived in Jakarta, I had never heard of, nor did I know the word autism. I think people did not know about autism back then. While not perfect, in Canada, autism care and management receive government support, and skilled practitioners have established a proficient system. In Indonesia, these same foundations are just being laid and are still in the early days of establishing nationwide support. Autism is not a familiar condition for most Indonesian people, and some dismiss the concept altogether. Although they might [be familiar with the term], some wrongly perceive autistic people as being [mentally disabled] and incapable of learning. Worse, some people blame the parents for a child’s challenges with emotional control. Some Asian families may hide or deny their children’s autism diagnosis because of the stigma around autism. They think autistic individuals are mentally ill and the family hides them to prevent public shame.

“They think autistic individuals are mentally ill and the family hides them to prevent public shame.”

 

As a woman of Asian descent on the autism spectrum, relationships are the biggest challenge I have. I am not socially savvy. Making and keeping friends is challenging for me. Even though I don’t have a broad social [circle], I feel grateful that I have a few close friends.

Some of the autistic traits that I have, such as challenges with Theory of mind and inflexible thinking, are also challenges I have as an autistic woman of Asian descent (those traits would be challenging in some situations but also could be beneficial in others). I am not good at judging situations like racism that other people experience, such as the recent Atlanta shooting and other incidents within our neighbourhood, until I experience it myself. I will illustrate my challenges with Theory of mind and inflexible thinking with my experience during COVID and the Jakarta Riot in 1998.

Reflecting on COVID, Racism, and my Autistic Traits

When the pandemic began, I started working from home. I felt okay and calm, as everything looked normal to me.  Then, I ran out of my food, so I had to go grocery shopping. I went to Costco to buy eggs—nothing. All of them were gone. I went to Save On—it was even worse. Most of the shelves were empty—no meat, chicken, eggs, dairy, etc. I started to panic, even after I got all I needed and got home. I couldn’t help it, and I had a panic attack that night, I think. 

Seeing the empty shelves in Save On, I relived the Jakarta riot in 1998, my first encounter with racist attacks. The violence in the riot was mainly targeted towards Ethnic Chinese Indonesians. There were houses burnt and plundered. Many Chinese Indonesian women were raped. A lot of people were burnt and killed. I was oblivious to what was going on and insisted on going to work as usual during those few days. People around me kept asking me why I still went to work, but I had no clue about the scary situation. It wasn’t until later one evening when I almost couldn’t get home because the roads were all blocked and I realized how dangerous it was.

Connecting my experience early in the pandemic and in the riot with the recent racist incidents in the society around us has made me realize that I am not good at judging racism and similar situations based on what I see on the news until I experienced it myself.  

“I think what really matters is giving back to the community, with or without a formal diagnosis.”

 

Serving the Autism Community

I didn’t go down the path of getting a formal diagnosis. I asked the psychologists I met with (Dr. Iarocci and Dr. Worling) about getting one, but neither of them suggested it. They told me to weigh the costs and benefits. They are right. There is no benefit for me receiving the formal diagnosis as I won’t get the funding, supports, etc., that kids do. When I initially discovered that I had Asperger’s Syndrome, I wanted to get a formal diagnosis to have objectivity; however, the diagnosis is not covered by MSP. [First,] I met with a psychiatrist from Burnaby Mental Health and he ruled out Asperger’s Syndrome, then I met with Dr. Grace Iarocci. She assessed me for an autism-related research study. [Now,] I also see Dr. David Worling for therapy. After considering [mine and my doctors’] opinions, I no longer feel that I have to force myself to get the formal diagnosis. The formal diagnosis doesn’t really matter to me because I won’t be eligible for government funding nor supports. I’m not even eligible for the Disability Tax Credit. I think what really matters is giving back to the community, with or without a formal diagnosis.  

I want to dedicate myself to the advancement of science. [Now that I know] I have autism, I know what path I belong on—the autism community. Shaping the future of the autism community and empowering people with autism to thrive are my passions.

Words of Encouragement

For autistic individuals — believe in yourself, follow your dreams, and don’t give up. Where there’s a will, there’s a way. For Asian parents of autistic children — believe in your children, support them, and encourage them to be the person they want to be.

Juliani Kusmanto is a self-advocate from Vancouver, BC. She was diagnosed with Asperger’s in 2010 while in her early 40’s. Since then, she has been profoundly involved with the autism community. Juliani has participated in several autism-focused research studies for the University of British Columbia, Simon Fraser University, and the University of Cambridge and served on a Family Services Community Grants (FSCG) Community Review Panel from 2017 to 2019. 

Juliani holds a Bachelor of Accounting from the Atma Jaya Catholic University of Indonesia and a Master of Business Administration in Finance from Prasetiya Mulya Business School in Indonesia. Currently, she works for PayPal as an Operational Reconciliation Lead. 

Juliani is a strategic and analytical thinker, strong-willed, and dedicated to learning. She is passionate about shaping the future of the autism community and empowering people with autism to thrive. Juliani believes the world needs Asperger’s brains; there is no innovation without autistic people. When she’s not working, you can find Juliani on bike trails, reading books, surfing the internet, or napping. 

If you have any questions about obtaining an adult diagnosis or you would like to share your story, please reach out to our Resource Team here.