Third Culture Autism: Being Different in a Difference
We autistics are uncomfortable to change, and so traveling; going from one place to another involves a lot of change, whether it’s engaging with a new environment, interacting with different people, or disrupting our regular routines. However, I am one of those autistics who love to travel. I love exploring new things and getting myself into new experiences. Of course, I will get overwhelmed by the many novel things surrounding me, but as someone who also has ADHD, I embrace myself with all of these exciting things.
But I can always recover after going on vacation for a few months. Staying in a different country and culture for years would be a different story.
Living in the United States as a Young Autistic Immigrant
I happen to have lived in the United States during my childhood, to be precise, from 4 to 8 years old. My dad had to study in Pittsburgh, Pennsylvania to help with his job in serving the government. He brought his wife and four children, including myself, with a scholarship that could only fully provide for up to two people.
My childhood in the US can be pretty interesting. I basically lived in poverty; my main source of entertainment was PBS Kids. We borrowed movies from the library instead of renting them out from Blockbuster. A fond memory that I had was that we would go to Sam’s Club periodically to bulk buy our daily groceries. That monetary status may have had a factor in how my autism was dealt with in the States. In Indonesia, I was diagnosed with “mild autism”. However, when my family and I arrived in the States and went to the childhood development advisor, it was deemed that it was “too soon” to see if I was autistic or not. This is despite that I was already four years old. Perhaps in addition to being poor, I was also female and not white, and any strange behavior would be considered “inherent attributes” to my sex and race.
At one point, I was considered to enroll in a gifted school, which is a whole another bag of neurodivergence, but perhaps because of the lack of diagnosis, I was sent to mainstream school instead. I remember a lot of things that happened back then from pre-school to 2nd grade that is attributed to my neurodivergence. One example would be how I sang the alphabet. The first time I heard the alphabet song was from a videotape provided by the school. It was sung by an animated woman in a stylized jazzy tune. I really enjoyed the strong vocals so I followed along. One day at school, we were told to sing the alphabet together. To my surprise, the alphabet song was sung much differently from the one I remembered watching. I became very upset and had a meltdown to the point where I had to be brought home. There were other times when I would act inappropriately, that even other autistic people would be appalled with, that I regret doing.
Fortunately, the teachers were very caring about improving my social skills and my emotional reactions. Teachers would give behavioral reports to parents that I can read myself, whether it’s satisfactory or something that needed to be worked with. One report said that I kept crying when I lost and that this behavior has improved. I remember the time when I was very upset that I got a B for the first time, and this has nothing to do with parental expectations. My homeroom teacher did not negatively judge me but instead tried to share her experiences of getting a C to make me feel better. My friends weren’t as nonjudgemental as my teachers (they’re kids after all) but they tried to tell me what’s considered socially inappropriate or not.
I wonder what would’ve happened if I stayed in the United States. Would I be one of those autistic women who would mask well into their 20s, up to the point where they would crash into burnout leading into their late autism diagnoses? We will never know. Because when I was 8 years old, we had to move back to Indonesia because my dad had to deal with certain things that were happening in his family. Being the firstborn son of an affluent Sundanese household, family comes first so he must return to the homeland where his family lived.
Living in Indonesia as a Third Culture Kid
Being in Indonesia as someone who has lived in the States (specifically from the East Coast) is quite interesting. I spent time in the Greater Jakarta Area, which was supposedly individualist. But based on my experience, it’s far less so than in the United States.
In Indonesia where I currently reside, community matters. How it matters depends on each ethnicity, and there are many ethnicities here. But Indonesians are all in agreement that the well-being of the community takes priority over the well-being of the individual. And that has impacted the way my autism manifests here. There were little to no attempts at trying to correct my behavior. According to most Indonesians, you do not confront other people for the sake of communal harmony. Don’t even bother to put the effort into teaching them crucial social skills that even autistics would agree upon like respecting boundaries and accountability. If there is someone who was deemed different, Indonesians would rather seclude them than get into a disruptive commotion.
This has brought dire consequences to my life as an autistic person. No one wanted to be friends with me. And the ones who did want to make friends with me were either from a high-demand group (read: cult) or wanted to take advantage of me. But I didn’t realize that no one actually liked me until it was way too late because no one else bothered to tell me what I did that came across as socially inappropriate, nor did anyone around me ought to teach me social skills. All they did was tell me that I was weird and different from other people and left me behind.
Even the teachers and psychologists I went to were like this. They didn’t bother to teach me emotional regulation, establishing boundaries, or effective communication because apparently, Indonesians aren’t the best when it comes to those three core values. When I address my concerns and stress because of social isolation, they did not acknowledge them. Not to mention that since I lack the knowledge to express my emotions, I could not completely explain my situation to anyone including my own family. I could only say that someone was “mean” to me, but I couldn’t put into words the actions they did that were “mean”, nor what my exact emotions were in reaction to that.
Before moving on, there is at least one positive that I gain from being an autistic living in Indonesia. Having a family who cares about you because it’s part of their core values is very useful when you’re disabled. You may not be able to be the best of yourself, but your family will always have your back if you’re in trouble. At least that’s what the Sundanese would do.
So what did I do while I didn’t have any friends here? I’ve hung out on online forms. I would hang out with people from Western countries like the United States and Australia on places like Wikia, deviantART, and Fanfiction.Net. Eventually, Western values have grown on a foundation that was already established when I lived in the States. You can read more about my experiences on the Internet as an autistic person here.
The Import of Autism Advocacy
I started to become more involved in activism by the time I entered high school. My parents and grandparents were activists, so this feels like familiar ground. I discovered online activism in particular from Tumblr. As immature and toxic as that site was in the early 2010s, it had kickstarted my initiative to make the environment around me change for the better. One such cause that caught my attention was autism self-advocacy.
Autistics gathered around on Tumblr with the tag “ActuallyAutistic”, as a reaction to neurotypical parents of autistics taking over the autism movement, the most notable one being Autism Speaks. In the tag, autistics would share their experiences with stimming, sensory issues, and special interests. It was very rudimentary compared to the online autistic activism of today, but it introduced me to how autism self-advocacy has existed such as the Autistic Self Advocacy Network, and how they and other similar organizations have provided programs to help autistic people such as funding for their individual needs to help them thrive (compared to intervening with their behaviors to satisfy the non-autistic society) and autistic meet-ups. The flourishing autism movement in the Western countries such as the United States, United Kingdom, and Australia inspired me to make my own group, Pemuda Autisme Indonesia (Indonesian Autism Youth), to look for autistics where I live, in 2014.
I was in for a rude awakening.
Cue my college days. I met various students on campus. I thought since I was going to an art college, everyone would be more liberal and understanding than usual. At least that was my impression based on browsing the Internet. My naive self decided to announce early that I was autistic to the whole class. No one took it seriously. One person even abused my sensory issues even though it had been common knowledge that I had them. Someone even came out to me to tell me that they had been diagnosed with autism at a young age, and I was told that they didn’t consider themselves autistic anymore. I had never met an autistic who actively denied their autism after they were formally diagnosed, so I was in complete shock.
After giving it some thought, I realized that Indonesia wasn’t even ready to deal with mental health as a whole, let alone autism. There were still strangers on the streets who clearly needed special mental health care being casually called “the local crazy person” as they refused to let them integrate into society. So of course an autistic person may actively deny their neurodivergence because having mental health problems carries a lot of shame. Even my friends and family who were more accustomed to Indonesian sensibilities had admitted to feeling ashamed of visiting the psychologist even though they were aware of its benefits. Meanwhile, I feel like visiting a psychologist is the same as visiting a doctor. Because of that, after one year I decided to close down Pemuda Autisme Indonesia because I felt like Indonesia still had to work on its issues with mental health before it deals with autism.
Years passed and I graduated from Institut Teknologi Bandung in 2019, majoring in Visual Art. Soon after, the COVID-19 pandemic hit. So many people, including Indonesians, went through a mental health crisis. More people in Indonesia were starting to realize how important mental health was, as many Indonesians in the psychology field started to offer free counseling services to anyone who has been psychologically impacted by the pandemic.
In 2021, I was involved in a study that focused on autistic young adults in Indonesia. I met many Indonesian autistics, some of them were already diagnosed at a young age, while others resorted to self-diagnosis because of Indonesia’s lack of proper diagnoses for adults on the spectrum. A few weeks later I met more autistics through Maisie Soetantyo, an Indonesian-American autistic self-advocate based in California who’s interested in autism self-advocacy in Indonesia as well. Almost every Indonesian autistic I’ve met who embraced their autism was younger than me, so I wonder if there’s a generational gap when it comes to autistic self-acceptance.
After gathering the Indonesian autistics, I decided that perhaps restarting Pemuda Autisme Indonesia would be a good idea, and so I did.
Autistics and Indonesian Culture
This should be the actual title of this article, but this is coming from someone who has lived in two different cultures. There’s another reason why the actual article title is that way. But read until the end.
Pemuda Autisme Indonesia has been re-established in April 2021. We had established a secretary, a treasurer, contributors, everything that would comprise a decent small grassroots organization. We’ve managed to put out some good content on social media such as Twitter and Instagram. Eventually, everyone, including myself, had their own difficulties and situations which prevented PAI to be consistent with its agenda. However, I will try to make sure that PAI improves as an autistic organization that serves autistics in Indonesia.
One way for this to happen is to see how autistics in Indonesia are different from the ones commonly found doing activism on the Internet i.e. those from the Western world and the vast majority of them are white. Autistics from the Western world, especially in the late 2010s, are very vocal about advocating their rights as autistic individuals. One of the biggest issues that are fought by autistic self-advocates is Applied Behavior Analysis (ABA), a therapy that uses behaviorism as its modus operandi. The way ABA works is that you give an autistic child a treat if they do something desired by the therapist so that they associate the behavior with something they like. The problem Western autistics have with ABA is that it suppresses autistic behavior, thus hiding the autistics’ true selves. This eventually leads to long-lasting trauma, often manifested as what is commonly referred to in the autistic community as “autistic burnouts”. Western autistic activists argue that this goes against the concept of neurodiversity, a social paradigm found by Judy Singer, which posits that anything that deviates from typical brain development; such as autism, ADHD, and dyslexia, are normal parts of human variation and that there should be no effort to eliminate behaviors related to them. The fight between autistics and the ABA therapy industrial complex has been a long one. The target of opposition is driven by capitalistic interests, making it hard to make ABA illegal as biased research supporting ABA is funded and the therapy is immediately marketed to parents of newly diagnosed children. Fortunately more parents are aware of how ABA is dangerous to autistic children as they ask for more guidance from autistic adults.
Indonesian autistics have a different challenge. In Western countries, especially in the United States, individualism is championed, so autistic activism over there are motivated by the desire to be their authentic autistic selves. Embracing your differences is a paramount principle of individualism, and the neurodiversity paradigm is an example of marrying neurodevelopmental disabilities with the aforementioned principle. Meanwhile Indonesians as a collectivist society don’t like standing out. Indonesians care about getting along with others and fitting in as much as you can. I was surprised when autistic Indonesians who were diagnosed young and did ABA told me that they were OK with the therapy and didn’t feel trauma related to it. But once I realized how Indonesians viewed themselves and their desire to conform over being their authentic selves, it started to make sense. However, I still believe ABA is a problem in Indonesia. The way ABA education is done is eerily similar to general education in Indonesia, where to be a good student, you got to memorize what your teacher told you so that you can get good grades. Neither general education nor ABA education is effective for Indonesians. All they do is to make them obedient, and this effect is exaggerated for autistics because we take things more literally.
Another challenge Indonesian autistics face is how many of them facing poverty in addition to discrimination as autistic. Indonesians are very busy trying to keep food on the table, so it is very difficult to get support for autistics on top of that. Historically, autism was seen as a diagnosis for the privileged, and poorer people would resort to secluding autistics from the rest of society or have them perform deadly rituals. Aside from the economic struggle, it is difficult for Indonesians to get their voices heard because of the complicated bureaucracy surrounding the democratic progress. Unlike in the United States where free speech allows many activist groups to thrive, Indonesians would rather make others comfortable than having a voice for themselves.
One other thing that I have realized, especially as a third culture kid, is that many autistic Indonesians behave like any other Indonesians. They have the same concept of shame, boundaries, and priorities in life. I had thought that a large part of my difference compared to other Indonesians was because of my autism, but that turned out not to be the case when I met other Indonesian autistics.
Conclusion
I’ve learned a lot from operating Pemuda Autisme Indonesia. The autistic activism sphere in Indonesia is much different from the one in Western countries. But one thing is certain, and it’s that we can use the neurodiversity framework from the West and shape it in accordance to local cultures. Bhinneka Tunggal Ika is a phrase thrown around in Indonesia meaning “Unity in Diversity”, so applying neurodiversity in Indonesia’s unique way isn’t impossible. And while it is the West that started the autism self-advocacy movement, it should be mindful not to push their own cultural biases when it comes to empowering autistics in other countries, whether it’s in Asia, Africa, or the Pacific Islands. I have addressed this in a recent seminar that included autistics all over the world. By acknowledging the cultural differences when it comes to approaching autism, hopefully, autistic self-advocacy and neurodiversity can thrive throughout the world, based on local customs and practices. I may not be the perfect representative of any culture, but I will try my best to raise the voices of people belonging to the culture they feel are a part of.
