The misuse of the term "tự kỷ" (autism) in Vietnam and its impact on the autistic community
And all you need to know about autism!
Remember the “AAA” thing back in 2020 that everybody was sharing on their Facebook wall to “raise 100.000 A’s for children with autism”? One thing I always questioned back then was whether the majority of those people even knew what autism was. Being supportive is one thing—and I am not against it—but being knowledgeable about your sharing is another. Also, if you lived in Vietnam for long enough, you might have heard someone saying, “Tao ở nhà nhiều quá, sắp tự kỷ đến nơi rồi” (translation: I’m about to get autism from staying home this long) or something similar to that. This doesn’t make sense at all. But in Vietnam, associating loneliness with autism is so normalized that even someone who understands autism, like myself, doesn’t find this sentence sounding that strange.
People might argue that it’s a harmless joke, but when a “joke” is consumed for long enough in a community that is as big as the social media users of an entire country, the joke suddenly becomes a fact. In the minds of many people, they still see autism as an isolated person, a phone addict, a genius, or someone really “dumb,” or as they say in Vietnam, “thiểu năng trí tuệ” (intellectual disability is a whole different concept btw, so try not to use this word on every single mental disorder!). That’s how a “joke” shaped our views on this relatively common disorder. If you see how many children in Vietnam alone are being wrongly treated just because of the lack of education surrounding this topic, you would want to consider this dangerous.
Though it is true that in the last few years, awareness has been raised, and people now understand more about what autism really is, somewhere in the corner of Vietnamese teens’ Facebook groups, profiles, or “motivational” pages on Threads, you will still see total abominations like these:
Reading these posts—some can be classified as “spreading false information—I get reminded of my friend who have real, diagnosed autism. Their autism isn’t as simple as “phone addiction,” “likes to be isolated,” or “not talkative.” They really do struggle every day to study, work, and do daily activities like society’s standard of a “normal person.” False information like these hurts a lot. It makes people like my friend even more challenging to understand and accept.
I asked a few of my friends to list out everything they know about autism without searching Google for fun, and this is what I got:
I was pleasantly surprised to learn that the people around me know about autism, which is incredible. However, it’s not the fairest experiment, so don’t use this as a scale to measure autism awareness in our society. Just for fun!
Why was this even a thing in the first place?
No one knows… that’s the thing about trends. The use of this word to express isolation has been around for more than a decade now, as news articles from as early as 2013 talked about the term’s false usage on social media. I do think it’s more related to linguistic than psychology in some ways.
How strong of an impact does it create on the autistic community?
The awareness of autism
When “autism” is thrown around casually, it desensitizes people to the actual challenges faced by autistic individuals, making it harder to raise awareness about autism and its needs. Also, doesn’t autism have enough stigma in our society already? You are not making yourself any cooler by using the term as a “personality quirk” on Facebook; you’re just creating a misconception about autism, which, very likely, can lead to discrimination and social isolation for those who are actually autistic. Also, you look fucking dumb doing that.
Social stigma means it can be more challenging for autistic people to get a proper diagnosis, delaying access to therapies, support groups, and other resources that can improve their quality of life.
Autistic people, personally
I have a friend in the community. They don’t go on the side of social media that falsely uses the term much, which is good. However, when I asked them about their opinion on this…they were confused, with a hint of rage. They thought that the way “tự kỷ” is being used is wrong (e.g., being lonely doesn’t mean autism because, as an autistic person, they aren’t lonely). So, they should not use the term that way.
To write out their emotions in a simple way, they felt invalidated because their experiences were being dismissed/minimized when something they have struggled with their whole life was used inaccurately. Can you imagine being someone who has autism, and then the “normal” people who you’ve been wanting to be for a long time suddenly start saying they are “autistic”? I’d be frustrated, too.
Furthermore, misunderstanding a term for too long causes it to become “normal.” People may start bullying/isolating autistic people because of this normalization, critically damaging their mental health.
But then, everything goes back to the education system…or just plain old ignorance. This post alone won’t be able to solve the whole country’s “autism misuse crisis,” but here’s everything you should know about this not-so-uncommon disorder!!
All About Autism - What is Autism?
Autism is a neurodevelopmental disorder characterized by markedly impaired social interactions and verbal and nonverbal communication, narrow interests, and repetitive behavior. Manifestations and features of the disorder appear before age 3 but vary greatly across children according to developmental level, language skills, and chronological age […] Autism was integrated into Autism spectrum disorder […] and is no longer considered a distinct diagnosis.
The American Psychological Association’s definition of “Autism” (2023)
“Autism” is an informal way to address Autism Spectrum Disorder (ASD), which is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave (American Psychological Association, 2023). Although ASD can be diagnosed at any age, it is described as a “developmental disorder” because symptoms generally appear in the first 2 years of life. It is not an illness; it is a type of neurodivergence a person is born with, and most likely, they will have to live with it for the rest of their life (National Institute of Mental Health, 2024).
“Neurodivergent” is a non-medical term that can be used to describe autistic people, which means their brains develop and/or differently. This means they have different strengths and challenges from people whose brains don’t have those differences (Cleveland Clinic, 2022). Specifically, in autistic brains, there is more folding in the left parietal and temporal lobes and in the right frontal and temporal regions (Rossi, 2022). Basically, their neurons are wired differently from non-autistic people (also called “neurotypical” people if they do not have any special brain conditions).
People who have ASD lie on a spectrum. It is not a single disorder, but individuals fall on different spectrums and experience it differently: different skills, abilities, and characteristics (Cleveland Clinic, 2020). There is wide variation in the type and severity of symptoms people experience, so no autistic person is the same as others.
People of all genders, races, ethnicities, and economic backgrounds can be diagnosed with ASD. In fact, it is estimated that about 1 in 100 children worldwide have autism—not that much of a rare disorder at all (World Health Organization, 2023). The American Academy of Pediatrics recommends that all children receive screening for autism, as the sooner an autistic child is diagnosed, the sooner they receive treatment.
Signs and symptoms
Though nobody with ASD is the same, most people with ASD will share several of the typical traits and behaviors that can be classified into three main categories: Difficulty in social interaction, communication, and repetitive behaviors (The National Center for Learning Disabilities, 2013). You can imagine they’re living in their own world, where every definition of “normal” differs.
Below is a list of those common traits and behaviors (The National Center for Learning Disabilities, 2013). Not everyone with ASD will have all of these symptoms, and in addition, just because an undiagnosed person has these signs does not mean they have ASD.
Social interaction
Making little or inconsistent eye contact.
Lack of ability to read facial expressions and/or express facial expressions.
Difficulties in moving their body postures to fit in with their peers or to use body language.
Lack of ability to receive emotional signals, understand how people feel, and/or be aware of their emotions. This is why sometimes their act can be perceived as “annoying” to people around them, and they may be unable to control their emotions in some situations.
Minimal to no reciprocity (exchanging things with others for mutual benefit, like a smile)
They lack interest in shared enjoyment, so they usually ignore or are confused when people talk about what they love to do. Autistic people have their solo, introspective kinds of enjoyment.
Similar to enjoyment, they have difficulties tuning in to the achievements of others.
They lack interest in fun, social, and interactive stuff, such as peek-a-boo— something commonly used to check for early symptoms of ASD.
Another early symptom could be that they are not comforted by touch. In contrast, other babies without ASD often love being hugged and sharing physical touch with their family members.
Communication (both verbal and non-verbal)
We often see a delay or a lack of talking (verbal). Sometimes, they do not talk and use behavioral responses or gestures to communicate (non-verbal). Their speech skills will develop but sometimes abruptly stop and may never develop again.
Problems in “taking turns.” They might talk in a weird order and not an “I talk when you stop” kind of conversation.
They have difficulties remaining engaged in a conversation, lesson, or anything they do that requires attention.
Speech disorders (each of these disorders has various different types, and the example may not represent the entire picture):
Echolalia: meaningless repetition of words just spoken by another person (e.g., you may offer a child a toy and ask them, “Would you like this toy?” A child might respond with, “Toy, toy,” instead of “Yes.”)
Palilalia: a speech disorder in which the speaker involuntarily repeats words, phrases, or sentences they have just spoken, often several times (e.g., “I want... I want... I want to go.” The individual repeats the words “I want” immediately after saying them)
Difficulty taking in the listener’s perspective, or any person’s perspective in general.
Difficulty understanding/responding to humor and innuendos (a hint, insinuation, or intimation about a person or thing, especially of a denigrating or derogatory nature)
Tend to be concrete-focused on their self-needs, as opposed to the needs of the people around them.
Repetitive behaviors
They might have a VERY high need for sameness in everyday life and for their routines to repeat the same way. In some extreme cases, breaking this repetition may send them into a total uncontrollable breakdown.
Tend to be focused/fixated on small details of parts and pieces (e.g., they pay attention to the wheels and screws of a truck but not how the truck works)
They often have preoccupations and may not care about others and their surroundings. This is called hyperfixation.
Behaviors that might be perceived as “weird” or “awkward” by social standards
Behaviors shown through their movements (these are called “stimming” ):
Rocking their back and forth
Flapping their arms and/or legs
Twiddling: Taking something and shaking it in your hands, moving it back and forth, banging/tapping around with it
Hypersensitive or lack of awareness (e.g., they might pay special attention to small things, like the texture of clothes or food, but others might not pay any attention at all).
A popular trait is that they are sensitive to noises because they seem to have no “filter” in their hearing or, more scientifically, “selective auditory attention.” When a person without autism talks to someone else, they ignore noises around them to concentrate. People with autism can’t do so. They will hear the other people talking, the baby crying, car honks, the rain outside, the sound of people chewing,…basically everything. That also explains why it’s so difficult for them to concentrate on something.
Other traits people with ASD MIGHT have
Low IQ—have significant cognitive and intellectual challenges.
Gifted—a popular misconception is that all people with ASD are geniuses. While this can sometimes be true, they can also have a “normal” level of intelligence.
Features of ADHD, anxiety, depression,…
Savant-like skills: remembering lists, maps, dates, a musical prodigy,…
Sleep problems
Activities for daily living, such as managing money, traveling, eating, or taking care of themselves, are constantly interrupted.
Levels of ASD
Autism is a spectrum and is a complex interaction between genetic and environmental factors, so there are many different ways that the disorder can manifest. However, do note that there are no official “types” of autism in the diagnostic criteria (Gehret, 2022).
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) uses three levels of autism to diagnose the severity of impairment. The levels range from least to most incompatible, depending on how incompatible their autistic traits are with neurotypical expectations and how much support they need in their daily lives (Rudy, 2019).
Level 1 ASD (formerly known as high-functioning autism or Asperger’s syndrome*)
Level 1 describes people who do not need much support. People with level 1 ASD may have a hard time communicating with neurotypical people (“normal” people), including their peers. For example, they may not say the right thing at the right time or be able to read social cues and body language (Rudy, 2023). Additionally, independence may differ from neurotypical expectations for people their age.
Most of the time, they can communicate in complete sentences. Still, they may have trouble communicating with neurotypical people. They are likely to have social anxiety and may experience burnout from acting neurotypical (this is called masking) to fit in (Rudy, 2023).
*The term “Asperger’s syndrome” was retired in 2013. DSM authors wanted to avoid the misconception that Asperger’s was a different condition from autism (Jassey, 2023). Also, Hans Asperger was a Nazi and collaborated in the murder of children with disabilities under the Third Reich. You probably don’t want to mess up the terms and associate your favorite people with a murderer!!
Along with Asperger’s, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and Childhood Disintegrative Disorder (CDD) also retired from the DSM in 2013.
Level 2 ASD
Compared to level 1 autism, level 2 presents more significant challenges with communication, social interaction, and adapting to change (Metrus, 2023). People with level 2 autism often have particular interests and engage in noticeable repetitive behaviors, a form of self-regulation called stimming.
To visualize stimming, imagine a person pacing back and forth during a class or meeting or saying the same thing repeatedly—repetitive actions. These behaviors are types of stimming and self-stimulation that autistic people use to regulate themselves internally (Cleveland Clinic, 2023). Neurotypical people stim by humming, tapping their feet or fingers, shaking their lap, etc., to feel more comfortable in some situations.
Why do they stim? Imagine the world is like a big, noisy party. For some people, it’s fun and exciting, but autistic people can sometimes find the party a bit too much (keep in mind that a lot of them are susceptible to sounds). They might see bright lights, hear loud noises, or feel like things are moving too fast—hypersensitivity. Stimming is like their unique way of turning down the volume of the party. It helps them calm down and feel better when things get overwhelming. Because the world isn’t always built for autistic people, they might need to stim more often than some others. It’s like needing your favorite quiet spot to relax in a loud party.
People with autism who have a more challenging time with the noise (like levels 2 and 3) might need to stim even more to feel comfortable.
Level 3 ASD (formerly known as low-functioning autism)
People with level 3 diagnoses need the most support and, as a result, are at very high risk for neglect, abuse, and discrimination. People in this category will have many of the same traits as those with levels 1 and 2 diagnoses but are entirely unable to mask and have very high burdens of self-regulation, thus making them engage in repetitive behaviors the most out of the three levels (Metrus, 2023).
They have problems expressing themselves accurately verbally and with body language or facial expressions, making it very hard to complete daily living tasks and interact socially. Some of these difficulties can be made more accessible with Augmentative and Alternative Communication (AAC) devices, as communication is a human right everyone should have access to, even if they do not speak. Stephen Hawking is a notable figure who communicated through this method his whole life.
Cause and risk factors
The cause of ASD is not well understood, and there is still no definite answer to the reason why people are born with it. The most convincing theory at the moment is related to genes: a person’s genes can act together with aspects of their environment to affect development in specific ways that lead to ASD (National Institute of Mental Health, 2024). Some gene-related factors that are associated with an increased likelihood of developing ASD include:
Having a sibling with ASD
Having certain genetic conditions (such as Down syndrome)
Being born prematurely
How to diagnose ASD
ASD can be diagnosed in both children and adults. Medical tests, such as blood tests or brain scans, cannot currently be used to diagnose ASD. Instead, psychologists, pediatricians, or neurologists diagnose the condition based on the patient’s history and behaviors (American Psychological Association, 2024). It is crucial to note that online tests for autism are NEVER a substitute for formal diagnosis.
To make a diagnosis of ASD, healthcare providers draw on several sources of information:
Interviews with patients or their families, teachers, and friends
Observations of the patient’s behavior
Cognitive and language abilities tests
Tests to rule out other conditions
I particularly like the Sally-Anne test, developed in 1985 by Baron-Cohen, Leslie, and Frith. It is not used to diagnose autism but is thought to offer some insight into why children with autism have difficulty functioning in social situations
“The Sally-Anne test involves participants observing a “puppet” scenario, detailed in the image below, and answering questions about the puppets’ knowledge. In the puppet scenario, Sally puts her marble in her basket and leaves the room. While Sally is away, Anne moves the marble from the basket to the box. Sally returns to the room, and the test participant is asked, “Where will Sally look for her marble?” this is the belief question. A correct answer is “the basket”, but this requires an understanding that Sally does not know something which the participant (and Anne) know. This understanding is a core component of the theory of mind development. The majority (85%) of typically developing 5 year olds ‘pass’ the test by answering correctly, whereas the majority of 5 years old with ASD (80%) answer incorrectly by answering or pointing to the box.”
—by The Centre for Education and Youth (2016), because I am too sleep-deprived to explain the whole thing
There are a looot of ways to diagnose ASD, and listing them out would turn this Substack post into a full research paper. You can read more about it here.
Treatment
There are currently no medications that treat the core symptoms of ASD, and no known methods have been able to completely cure ASD. All current treatments for ASD have the same goal: to seek and reduce symptoms that interfere with daily functioning/quality of life (Centers for Disease Control and Prevention, 2024). There are various treatment approaches, but every autistic person is unique, so the best approach will vary.
Please learn more about treatments here!
Useful resources if you are further interested
Links gathered by u/nordlysbuksejenta’s comment in r/autism
About autism in adults:
About autism in females:
Understanding Autism in Women, by Corinne O'Keefe Osborn and Alina Sharon from Healthline (2023)
Autism in Females: Is it Different?, by Claire Watts from High Speed Training (2022)
An overview of hypersensibilities, and in what way they might occur for all the different senses:
Sensory differences - a guide for all audiences by National Autistic Society UK
About "masking":
Autism Masking: To Blend or Not to Blend, by Rebecca Joy Stanborough from Healthline (2021)
And a study about the correlation between late diagnosis of autism and quality of life:
The name of the research is too long, can’t copy but it’s pretty interesting (2021)
This took a month to write, half a year to research (with a lot of procrastination), and years of interest! If you made it here, thank you so so much!!
Citations
(1) American Psychological Association. (2023). APA Dictionary of Psychology. Dictionary.apa.org. https://dictionary.apa.org/autism-spectrum-disorder
(2) American Psychological Association. (2024, May 1). Diagnosing and managing autism spectrum disorder (ASD). Apa.org. https://www.apa.org/topics/autism-spectrum-disorder/diagnosing
(3) Centers for Diseases Control and Prevention (2024, March 5). Treatment and Intervention for Autism Spectrum Disorder. Autism Spectrum Disorder (ASD). https://www.cdc.gov/autism/treatment/index.html#:~:text=Developmental%20approaches%20are%20often%20combined
(4) Cleveland Clinic. (2020, December 29). Autism Spectrum Disorder (ASD): Causes, Symptoms, Treatment & Outlook. Cleveland Clinic; Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/8855-autism
(5) Cleveland Clinic. (2022, June 2). Neurodivergent: What It Is, Symptoms & Types. Cleveland Clinic; Cleveland Clinic. https://my.clevelandclinic.org/health/symptoms/23154-neurodivergent
(6) Cleveland Clinic. (2023, May 24). What Is Stimming? What You Need to Know. Cleveland Clinic. https://health.clevelandclinic.org/what-is-stimming
(7) Gehret, M. (2022, August 10). What Are the 5 Different Types of Autism? Spectrum of Hope Houston. https://spectrumofhope.com/blog/5-different-types-of-autism/
(8) Jassey, J. B. (2023, December 5). Why Asperger’s Syndrome Is No Longer an Official Diagnosis. Verywell Health. https://www.verywellhealth.com/does-asperger-syndrome-still-exist-259944#:~:text=However%2C%20he%20did%20not%20coin%20the%20term.&text=One%20reason%20it%20was%20retired
(9) Rudy, L. J. (2019). Is There Really Such a Thing as High and Low Functioning Autism? Verywell Health. https://www.verywellhealth.com/high-and-low-functioning-autism-260599
(10) National Institute of Mental Health. (2024, February). Autism spectrum disorder. National Institute of Mental Health (NIMH). https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd#:~:text=Autism%20spectrum%20disorder%20(ASD)%20is
(11) NYU Langone Health. (2024). Diagnosing Autism Spectrum Disorder in Children. Nyulangone.org. https://nyulangone.org/conditions/autism-spectrum-disorder-in-children/diagnosis#:~:text=Specialists%20use%20standardized%20assessments%20during
(12) Metrus, N. R. (2023, July 28). Making Sense of the 3 Levels of Autism. Verywell Health. https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233
(13) Rossi, C. (2022, November 29). Autism Spectrum Disorder: Autistic Brains vs Non-Autistic Brains. Www.healthcentral.com. https://www.healthcentral.com/condition/autism/autism-brain-differences
(14) The Center for Education and Youth. (2016, July 27). Understanding autism: Theory of mind and the Sally-Anne test. CfEY. https://cfey.org/2016/07/understanding-autism-theory-mind-sally-anne-test/
(15) The National Center for Learning Disabilities. (2013, March 5). What Is Autism Spectrum Disorder? Click on this YouTube link to watch
(16) Tuổi Trẻ Online (2013, February 25). Đừng chạy theo mốt “tự kỷ”! Báo Tuổi Trẻ. https://tuoitre.vn/dung-chay-theo-mot-tu-ky-534267.htm
(17) World Health Organization. (2023, November 15). Autism spectrum disorders. Www.who.int. https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders#:~:text=It%20is%20estimated%20that%20worldwide
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