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Post 1- description: !Content warning! : outdated and harmful views on autism, ableism, “autism recovery”. This is the first part of a series of 3 posts on the topic: what the autism medical field is like in China. You’ll see a lot of outdated and harmful concepts, terms, and beliefs, because China is simply so far behind on autism awareness. Even in the medical field. And this is worth being addressed. A lot of what I include in these posts might see shocking or surprise you. But it’s the norms for many Chinese people. I wish to provide another perspective regarding the conversations about “autism recovery” and terminologies around autism. What i write in these posts are not based on any particular scientific studies or research reports. But a combination of what I see and experience in my life as a bilingual and multicultural Chinese Canadian person, and my interview with an inclusive designer who specializes in designing for disabled people.
slide 1: CW: outdated and harmful views on autism, ableism, “autism recovery”. Putting on and taking off the ‘autism hat’ (about the autism label in China”. What the autism medical field is like in China - Part 1.
Slide 2: This is the first in a series of three posts that explore the complex relationship between history, stigma, and the medical approach to autism in China. This is (part of) what this autism medical field is like in China.
Slide 3: When discussing autism in Chinese contexts, the phrases “putting on the (autism) hat” and “taking off the (autism) hat” are frequently used by parents and medical professionals alike. In this context, the “autism hat” is a metaphor for the “autism label”. These phrases can be confusing when translated directly to English, as there are no equivalent expressions.
Slide 4: The phrase “taking off the … hat” has a particularly dark origin in Chinese history, particularly the Cultural revolution (1966-1976). During this period, individuals labelled as right-wing* were forced to wear a physical hat as a symbol of shame and were subjected to harsh punishments until they were “corrected”, at which point the hat could be removed. *For those who didn’t know, the “right-wings” were defined as “intellectuals who appeared to favour capitalism, or were against one-party rule as well as forcible, state-run collectivism.” (It’s ok if you’ve never heard of this before, or don’t fully understand it. I myself really struggle to understand some politically-related things, but still wanted to provide some background info)
Slide 5: The historical context adds a layer of humiliation to the modern usage of “taking off the … hat”, where any negative label is seen as something to be desperately removed.
Slide 6: In today’s context, “putting on the autism hat” implies that autism is a negative label, akin to social humiliation. This perspective is deeply problematic, as it suggests that autism is something bad that must be corrected or removed. Consequently, “taking off the autism hat” became the primary goal for many parents of autistic children, perpetuating stigma around autism.
Slide 7: Many parent genuinely believe that “taking off the autism hat” is possible , because some medical professionals and related organisations in China promote the idea that autism can be “cured” or “reversed”. This idea is both misleading and harmful, fuelling the desperation of parents who want their children to be “normal” and leading to a profit-driven approach within the medical field. Often, the “autism hat” can be “taken off” by medical professionals when the child no longer shows autistic traits.
Slide 8: Autism rehabilitation centres in China often offer therapies that claim to “treat” or “cure” autism, reflecting the belief that autism is an illness that can be recovered from. (And yes, these centres really are called rehabilitation centres or recovery centres and not therapy services). These centres are profitable, and their success is often measured by how many autistic children they “cure” or “take the autism hat off”. And I will talk more in depth about those so-called rehabilitation centres in the next post.
Slide 9: The belief that autism can and should be cured places immense pressure on autistic individuals and their families, It reinforces the harmful notion that autism is a flaw or defective or illness, rather than a natural part of neurodiversity that should be accepted and embraced. Autism cannot and should not be “cured”. Instead, acceptance and understanding should be prioritised. Unfortunately, many in China are still unaware of or misunderstand this concept.
Slide 10: Sources: https://en.wikipedia.org/wiki/Anti-Rightist_Campaign [cannot transcribe but also wikipedia]
Post 2: description: !Content warning: outdated and harmful views on autism, ABA, ableism, “autism cures”! This is the second part in a series of posts about autism-related medical field in China. And this post focuses on autism rehabilitation centres (places that offer autism-related therapies). What I talk about in the post is objective and factual, but my mom (who assists me with making posts and judging if the content is appropriate) said that I’m being too nice and gentle in the post. [laughing crying emoji] Because i haven’t really talked about the extremely ridiculous an disgusting things that medical professionals / rehabilitation professionals said on social media or wrote in articles about autism. She said, it’s really worth talking about what the professionals say, and not just what the centres are like. and i think she’s right, and there’s so much to revels! so i’ll make another post to expand on this topic, and i’ll post it after this series.
Slide 1: ! Content warning: outdated and harmful views on autism, ABA, ableism, “autism cures”! Rehabilitation centre and autism-related therapies in China. What the autism medical field is like in china - Part 2.
Slide 2: In China, autism-related therapies are often offered in “rehabilitation centres”, because many people (including some medical professionals and parents) believe that autism is an illness that can be recovered from. This belief leads to the idea of “correcting” or “curing” autism, rather that accepting autistic individuals as they are.
Slide 3: I communicated with an inclusive product designer ( originally from China and currently based in London, UK) whose undergraduate university has a department dedicated to autism-related rese@rch, She visited the rehabilitation centres affiliated with the university, where she interviewed staff members and observed firsthand the types of therapies and equipment available. Drawing from her insights and my own online research, i aim to provide an overview of kew of what autism rehabilitation centres in China are like.
Slide 4: ABA( Applied Behavioural Analysis). ABA( Applied Behavioural Analysis) is the most prominent therapy used in these centres. In China, ABA is relatively new and highly regarded (still called the “golden standard”) with many parents and professionals firmly believing in its effectiveness. However, in the English-speaking world, ABA has been heavily criticised for being harmful.
Slide 5: ABA( Applied Behavioural Analysis). I’ve seen Chinese parents who have immigrated to countries like Australia, Canada and the US express confusion over why local medical professionals discourage the use of ABA. In contrast, Chinese medical professionals rarely criticise or even question the practice. I’ve also come across several licensed ABA therapists on Chinese social media. Many of them are receiving training in ABA in the U.S. and are now aiming to introduce what they consider the "most effective treatment" for autism into China.
Slide 6: Sensory integration therapy. Sensory integration therapy is another common practice offered in these rehabilitation centres. It is much less controversial int eh West and generally considered beneficial for helping individuals become more comfortable with sensory differences. But this therapy has become highly commercialised and overly popular in China.
Slide 7: Sensory integration therapy. Neurodiversity awareness in China is very limited, yet there has been a sudden boom in sensory integration therapies. Which is a really interesting phenomenon. During a my trip to Chine, I was surpirsed by the number of training centres dedicated to sensory integration therapy that I encountered jsut by walking through city streets (spoiler: there were A LOT). I will expand on this topic in a future post.
Slide 8: Speech-Language Therapy. Speech therapy, often combined with ABA methods, is also prevalent in there rehabilitation centres. The inclusive designer observed a notable lack of access to Augmentative and Alternative Communication (AAC) tools. While PECS (Picture Exchange Communication System) boards were in use, they were primarily used to teach children vocabulary rather than as a means for the children to communicate. A LOT of effot is put into "training" children to use verbal speech. And there were no iPads or tablets available.
Slide 9: Speech-Language Therapy. This lack of effective communication tools for non-speaking autistc individuals reinforces the harmful belief that they have nothing to say. However, non-speaking does not mean non-thinking. In the English-speaking world, it is widely recognised that non-speaking autistic individuals often have much to communicate, just not through traditional speech.
Slide 10: Presumed competence. The absence of alternative communication tools in China perpetuates a cycle where non-speaking individuals are presumed to have nothing to express (they are also presumed to be non-thinking, and incapable of making decisions or even understanding other people's speech), further marginalising them. It seems fair to conclude that the concept of presumed competence is not well established in China.
Post 3: description: !Content warning: outdated and harmful views on autism, ABA, ableism, “autism cures”! This is the last post in this series, talking about some aspects within the autism medical field in China. I've never really heard of the concept of "fake autism" or "pseudo autism" in English-speaking communities before. And I'm not sure if it's a thing here. But it's definitely a thing in China, and a lot of Chinese medical professionals / paediatricians would write posts and small articles explaining the difference between "real autism" and "fake autism". So, what do you think? Do you believe in the idea of "fake autism"? Is it reasonable to think that "fake autism" could be a thing?
Slide 1: !Content warning: outdated and harmful views on autism, ABA, ableism, “autism cures”! About 'real autism' VS 'fake autsim' in China. What the autsim medical field is like in China - Part 3.
Slide 2: In CHina, there's the concept of two types of autsim. I'm not talking about Autism VS Asperger's this time though (although China does still use both terms, and they mean very different things). The two types I'm referring to are "real autism" and "fake autism".
Slide 3: This classification is used by medical professionals to caution parents about labelling their autistic children. (I guess a way to say that "hey, your child MIGHT be curable, so don't feel hopeless just yet!") And to recommend different "treatments" based on whether the child is thought to have "real" or "fake" autism. It's also important to note that in CHine, autism is often viewed as an illness or disease.
Slide 4: "Real autism" is seen as very severe and quite rare. Doctors usually use this label for cases they think are the most extreme and challenging. They believe that these cases need serious intervention. On the other hand, "fake autism" is viewed as less sever. It's often dismissed as "just" a developmental delay or blamed on other factors that cause symptoms similar to / mimic autism. The idea is that children with "fake autism" can easily recover or be "fixed". They are thought not to need the same level of treatment as those with "real autism".
Slide 5: Some doctors even suggest that "fake autism" might be caused by parental neglect, lack of physical exercise, or not having enough playdates with other children. They claim that this type of "fake autism" can be "cured" by increasing physical activity (more stimulation), spending more family time together (more affection and exposure to relationships), and talking more with the child (more verbal speech cues).
Slide 6: For other types of "fake autism", such as developmental delays, intensive ABA therapy is often recommended. In fact, some doctors use "recovery" after ABA therapy as a way to decide if the child has "real" or "fake" autism. If the child responds well to ABA and stops showing signs of autism after several sessions, they are likely considered to have "fake autism". If the symptoms continue or get worse, the child might be labelled as having "real autism".
Slide 7: This distinction can lead to a lack of proper support for children labelled as having "fake autism". Their needs might be downplayed or misunderstood. It also supports the idea that only "severe" cases of autism are real, which can be harmful and dismissive of the different experiences of autistic individuals.
Slide 8: This idea is very different from approaches in the West. Here, autism is seen as a spectrum with different needs and challenges, not a stric division of severity or types. The view of autism in China as either "real" or "fake" affects both the support autistic people receive and how society sees autism. After all, who would want "fake" anything as their diagnosis?
Slide 9: So, what do you think? Do you believe in the idea of "fake autism"? Is it reasonable to think that "fake autism" could be a thing? How would you feel if you were told you had "fake autism"?
Post 4: description - !CW: erroneous and harmful views on autism, ableism, "autism recovery", homophobia, abuse!. Some of the ridiculous things that medical professionals and paraprofessionals in China say about autism - in quotes (and what do I think about them) Part 1. Before I left Chinese social media, I made screenshots of some of the wildly inaccurate and misleading opinions expressed by "experts" on autism. I think these include both misinformation and disinformation. I wanted to share these opinions and comments because, I want people here to know that autism awareness is serously lacking in some countries / places / areas. (in response to the autism awareness VS autism acceptance discussions). I'm aware that bad / biased / unqualified medical professionals in the western world also exist, but autism-related misinformation in China is PERVASIVE. It's everywhere. And you can't even correct or argue with the so-called "experts" or "professionals" most of the time - they'll simply tell you that "you know nothing" and maybe block you. I genuinly think having good and sufficient autism awareness is actually a privilege, perhaps it shouldn't be, but it sadly is. Back in the 90s, autism awareness was lacking in the western world, and people feared autism. It's like that right now in China. [One tear sad emoji]. (I've also included the original Chinese comments, so that anyone who can read Chinese, can zoom in and read them. I've had help from ChatGPT and my mom when translating to English)
[note - chinese not transcribed as the transcriber cannot write chinese]
Slide 1: !CW: erroneous and harmful views on autism, ableism, "autism recovery", homophobia, abuse!. Some of the ridiculous things that medical professionals and paraprofessionals in China say about autism - in quotes (and what do I think about them).
Slide 2: START QUOTE "I am a rehabilitation therapist certified through the national health examination, and I've been working in child rehabilitation for 16 or 17 years, gaining extensive experience. My experience tells me that over 80% of autism cases in mainland China are fake (misdiagnoses)" END QUOTE. (Misdiagnoses definitely can exist, but 80%?! That's wildly inaccurate, misleading, and irresponsible "opinion")
Slide 3: START QUOTE "Why were there fewer cases of autism in the past? Becuase back then, children were busy doing household chores, busy working, and busy getting scolded or beaten. They didn't have time to develop autism or mental illnesses." END QUOTE (This comment is so wrong in so many ways, but sadly it's said by a "professional" who works with ND children on a daily basis. Can't imagine what he says towards the children and their parents.)
Slide 4: START QUOTE "In a certain sense, each of us could potentailly be autistic. Autism stems from a lack of ability, whether it's physical, intellectual or emotional. Any deficiency can lead to autistic behaviour. Autism is an adjective that describes a state of self-isolation." END QUOTE (While the Chinese term for autism can be misinterpreted by its literal meaning "self-enclosure disease", real professionals should know better than this!!)
Slide 5: START QUOTE "(about autism-related topics), don't blindly trust authority. The U.S. has come up with 97 genders, and LGBT issues have even entered (ruined) kindergartens, harming children. It's not good to regard them as an authority" END QUOTE. (This is more than jsut ignorance, this is discrimination. On both autism-related topics and LGBTQIA+ communities...)
Slide 6: START QUOTE "Over 80% of children with true autism have intellectual disabilities, and also abnormal behaviours, and even emotional issues. In our training, we've found that if children learn to be obedient and sensible at a young age, their attention span and intelligence can gradually catch up as well" END QUOTE. (The statistics is untrue, and clearly this comment is made bya pro-ABA person since so much emphasis is put on "learning to be obedient").
Slide 7: START QUOTE "The crawling stage is often easier for establishing social interaction than the early walking stage... While it's okay for typical children to skip crawling, establishing social interaction during the crawling stage can effectively prevent the development of autism" END QUOTE. (Even though I don't know much about infant development, I know that autism cannot be prevented)
Slide 8: START QUOTE "Therefore, children with mild developmental delays should not start walking too early. They should spend more time int he crawling stage... allowing their fine motor skills to develop properly... You can attach appropriately weighted sandbags to a child's ankles to limit ankle movement. This helps gradually slow down their walking speed" END QUOTE. (Again, I don't know much about infant development and please correct me if I'm wrong, but it doesn't seem like a good idea to strap sandbags onto a child's ankles to prevent them from walking?!)
Slide 9: START QUOTE "If you know that you have autism, it's not autism in the true sense" END QUOTE. (Ummmm, just no)
Post 5: description - !CW: erroneous and harmful views on autism, ableism, "autism recovery", homophobia, abuse!. Some of the ridiculous things that medical professionals and paraprofessionals in China say about autism - in quotes (and what do I think about them) Part 1. Yes, these are all said / typed by medical professionals in China. But this is only a small selection of what I've seen doctors and "experts" say online, but it's enough to see the ignorance around autism. I've also seen some supposedly truth-worthy doctors from big hospitals saying similar things. And it's just sad, and hopeless - no wonder Chinese parents are so scared of autism. The fear-mongering is real. Messages similar to the infamous "I am autism" video by Autism Speaks is still being spread in China...
[note - chinese not transcribed as the transcriber cannot write chinese]
Slide 1: !CW: erroneous and harmful views on autism, ableism, "autism recovery", homophobia, abuse!. Some of the ridiculous things that medical professionals and paraprofessionals in China say about autism - in quotes (and what do I think about them).
Slide 2: START QUOTE "Regressive-type autism is acquired rather than congenital. As long as it is not innate, any diagnosis that can be "removed" later is considered false" END QUOTE. (I didn't previously know much about regressive autism, so I reached out to the online autistic community, and people have taught me so much! Regression can happen at any age for an autistic person, but no matter what, autism is something we are born with. We can't jsut "become" autistic one day, nor can we "recover" from autism!)
Slide 3: START QUOTE "Autism is a global challenge. Transcranial magnetic stimulation and auditory devices can alter brain neurons and are the only treatment methods. Over 90% of autism cases are effective with my treatment" END QUOTE. (I had to google what transcranial magnetic strimulation, or TMS is, and how it claims to treat autism. I see that it's mostly used to treat depression by stimulating the brain to release more serotonin. But by FDA standards, TMS can only be used by adults. And yet, it is being recommended by a paediatrician?!?!)
Slide 4: START QUOTE "Autism is a market that is carefully designed and cultivated. Children developing autism is a man-made disaster, caused by deliberate misinformation. Is it something that can be ..." END QUOTE. (This was the title of an article written by a paraprofessional. He was also complaining that people kept "reporting" his article so that it was taken down. I'm SO GLAD that's the case! Because what kind of bullshit is this?!?!)
Slide 5: START QUOTE "Asperger's is a genius disease, implies high intelligence. However, in this case, the child's IQ is somewhat lower than typical, making it an atypical form of high-functioning autism that is more subtle" END QUOTE. (Asperger's is NOT genius disease! I understand that the Chinese medical system still differentiates Asperger's from Autism, but this is still wrong! After some criticism, he went on to say that he meant Asperger's kids are "geniuses" compared to "low-functioning kids". Still no...)
Slide 6: START QUOTE "According to traditional Chinese medicine, autsim is seen as a form of "evil fire". This evil fire invades the five organs over time, causing heat to damage the body's yin energy, leading to dry and constricted blood vessels. Without the nourishment of yin energy, the nerves become dry and tense, resulting in restricted movement in the meridians" END QUOTE. (Honestly, just no. I have nothing against Traditional Chinese Medicine overall, but this statement / belief is just a big no-no. EW)
Slide 7: START QUOTE "The current understanding, definition, and explanation of autism as outlined in the DSM-5, along with its foundational theories, clinical approaches, intervention methods (including various schools of thoughts and courses), and research directions, are completely wrong!! They are full of major logical and theoretical flaws, riddled with inconsistencies, absurdities, and blatant, obvious errors!!" END QUOTE. (Umm, I understand that the DSM has its flaws and limits, but it's so irresponsible and ignorant to say it's "completely wrong"!!?)
Post 6: description: I saw disabled Chinese people out in public, and that's great news! [three wheelchair emojis]. This is perhaps the most (pleasantly) surprising things I've encountered while travelling in China. Really really happy to see the progress [hands up emoji]
Slide 1: I saw disabled Chinese people out in public, and that's great news! Here's why
Slide 2: When I visited a museum in Sichuan, China, I noticed two individuals, possibly friends, who were both disabled and exploring the museum independently. One of them used a wheelchair, and the other, who had one leg, used crutches. Both were young and female presenting. Within the same museum, I also saw another wheelchair user. A few days earlier, while shopping at Decathlon, I noticed that one of the staff members was a wheelchair user, operating a power chair.
Slide 3: One evening, I saw a man casually cycling on the street, no faster or slower than the average man. And I saw he had a crutch slung over his shoulder while riding a publicly shared bicycle with one leg. At an outdoor museum, the man buying tickets ahead of us mentioned to staff that his child was disabled. I realised the child I had seen earlier at the entrance was his son. The boy, around 6-10 years old (I'm not great at estimating ages) was in a wheelchair being pushed by his grandparents. He was flapping his hands in a fashion that is all too familiar.
Slide 4: In another museum, I saw a middle-aged couple with dwarfism, and a boy about 10 years old in a wheelchair, viewing the exhbits with his parents. He possibly had cerebral palsy or a similar condition. While taking a shuttle bus to a populat tourist site, one of the passengers was a wheelchair user. He navigated the spaces independetly, without a carer, assistant, or family member. Unfortunately, the shuttle bus wasn't accessible, so strangers had to help carry him and his wheelchair onto the bus.
Slide 5: I also saw a person walking with a noticable limp despite using a cane, a manual worker who was blind in one eye, and a little person in a mall. You might think that seeing disabled people in public spaces is normal, but I was pleasantly surprised by what I saw. When I lived in China years ago, I barely saw any disabled individuals in public, let alone those navigating the streets and spaces independently.
Slide 6: China, in general, remains largely inaccessible for all kinds of disabled people, but it's clear that barriers are slowly lifting, bit by bit (in some cities). However, many disabled and neurodivergent individuals are still hidden away, either at home or in institutions, often excluded from education and workplaces.
Slide 7: Less than a decade ago, my family visited Japan. I experienced my first cultural shock while travelling on the metro. I asked my parents "Why are there so many disabled people in Japan?" They explained that Japan doesn't have more disabled people than China, but in Japan, disabled people can go out and navigate cities independently, something that was not possible for most disabled people in China due to the way the cities were designed. Thus, many Chinese people were "invisible".
Slide 8: But now, they are no longer entirely invisible because I see them, albeit only some of them. I hope that more disabled individuals can be seen and heard in the future, roaming the cities in any way they can or want, living their lives openly. I was particularly excited to see disabled children out in public, enjoying the same experiences as other able-bodied and able-minded children.
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