Does the Study of Culture Enrich Our Understanding of Autism? A Cross-Cultural Exploration of Life on the Spectrum in Japan and the West

[VictorR]

An interesting read, since one well established concern is that the assessment criteria for autism has a bias towards American middle-upper class boys given virtually all of the early identified cases come from there, and those with intersectionalities (socio-economic background, cultural background, race, gender, etc.) tend to be misdiagnosed and/or diagnosed later.

Abstract​

Autism spectrum condition is a neurodevelopmental condition in which people are characterized by their social differences. As such, autistic behaviors are often identified as deviating from what is considered normal or neurotypical ways of interacting with the world as dictated by a particular culture. This theoretical article explores a cultural model of disability concerning autism spectrum condition and how Western ideals of “normality” dominate autism-related discourses. To illustrate this point, the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association [APA]) descriptors are discussed concerning Western and, in contrast, Japanese cultural practices. Cross-cultural research from several domains reveals the subjectivity inherent to what is considered “normal” across cultures. In addition, research into the prevalence and lived experiences of autistic people and their families in Japan reveals the complexity of understanding neurodevelopmental conditions in non-Western countries. The article discusses autism in the context of culture and suggests further areas for cross-cultural research that can further build on the cultural model of disability.

Full article available at

https://journals.sagepub.com/doi/10.1177/00220221231169945

 

[LadyS]

Yes, thank you for posting this. I've always thought the way autism is portrayed and analyzed is more aligned with Western culture and ignores the fact that much of the population is not.

I recall when I had my son diagnosed they asked all sorts of questions about his behavior and abilities at home which were very typical of American/Western culture, like playing pat-a-cake or American type kid games which weren't done at home. Or not being able to do certain things independently when our culture is very much about being dependent on parents and elders throughout childhood. This is why we form strong social bonds with families and community early on.

 

[Neonatal RRT]

Yes, thank you for posting this. I've always thought the way autism is portrayed and analyzed is more aligned with Western culture and ignores the fact that much of the population is not.

I recall when I had my son diagnosed they asked all sorts of questions about his behavior and abilities at home which were very typical of American/Western culture, like playing pat-a-cake or American type kid games which we didn't employ at home. Or not being able to do certain things independently when our culture is very much about being dependent on parents and elders throughout childhood. This is why we form strong social bonds with families and community early on.

Agree. From an American/Western culture perspective, more specifically, middle-class America. I am thinking that the Gen X generation, as a group, are likely the last that grew up independent, to the point of what would certainly be called "neglect" by today's standards. Many fathers were the quiet stoic type, had a duty to the family whether he liked it or not, worked hard for a modest lifestyle. Some mothers, more than any previous generation, were also at work, and the children were often without a parent in the home for the majority of the day. Our parents showed us how to do things because they weren't going to be around to do them for us, and at the end of the day, we had to put emotions aside and just do what needed to be done. Cry, get frustrated, get angry, protest all you want,...still have to do things out of duty and responsibility to yourself, your siblings, your parents. Nobody gave a care about your emotions, they served no purpose, they got you nowhere. You want to go somewhere, find transportation. Need money, work and get some. We weren't allowed to be in the home unless it was after dark or the weather was severe, otherwise, you were gone, exploring your world, doing your thing, whatever that was, just carry some change for a pay phone in case you got in trouble. Looking back, it was probably the best way to grow up as a person with Asperger's. Life skills 101. Those of us that would be considered the Asperger's/ASD-1 variants just simply had to learn to do things for ourselves and were never treated any differently than our neurotypical peers. So, now, here we are in our 50's and 60's, getting a diagnosis, and many of us, might never get diagnosed. Then the epiphany that we likely got were we got in life as a result of a lot more hard work and struggles than our neurotypical peers.

Our children and grandchildren are growing up in a VERY culturally different world than we did, almost a complete opposite of what we experienced, for better and worse. The autism experience for people under 40, and certainly under 30, is a stark contrast to ours. So, it is often difficult for us to relate our experiences and give advice when we can't even imagine each other's experience. I know when I start writing about things like this, "When I was a kid,...blah, blah, blah." there's an edge of being a bit of a stoic, uncaring, cold-heartedness about it, but I never had any choice in the matter. It was what it was, and it shaped who I am. No excuses. My feelings don't matter. Just do what needs to be done. When I see some of these young people wallowing in their emotions to the point where they are suicidal and lost all hope, it just breaks my heart to know that culturally, we've created every bit of a destructive monster that I grew up with, just on opposite ends of the cultural spectrum. Hopefully, someday, we will look back at our mistakes and find some middle ground, because neither situation is good.

I would think every country, even those with rich cultural histories that go back thousands of years, has experienced significant changes over the past 40-50 years. As such, the autism experience has likely changed, as well.

 

[LadyS]

Agree. From an American/Western culture perspective, more specifically, middle-class America. I am thinking that the Gen X generation, as a group, are likely the last that grew up independent, to the point of what would certainly be called "neglect" by today's standards. Many fathers were the quiet stoic type, had a duty to the family whether he liked it or not, worked hard for a modest lifestyle. Some mothers, more than any previous generation, were also at work, and the children were often without a parent in the home for the majority of the day. Our parents showed us how to do things because they weren't going to be around to do them for us, and at the end of the day, we had to put emotions aside and just do what needed to be done. Cry, get frustrated, get angry, protest all you want,...still have to do things out of duty and responsibility to yourself, your siblings, your parents. Nobody gave a care about your emotions, they served no purpose, they got you nowhere. You want to go somewhere, find transportation. Need money, work and get some. We weren't allowed to be in the home unless it was after dark or the weather was severe, otherwise, you were gone, exploring your world, doing your thing, whatever that was, just carry some change for a pay phone in case you got in trouble. Looking back, it was probably the best way to grow up as a person with Asperger's. Life skills 101. Those of us that would be considered the Asperger's/ASD-1 variants just simply had to learn to do things for ourselves and were never treated any differently than our neurotypical peers. So, now, here we are in our 50's and 60's, getting a diagnosis, and many of us, might never get diagnosed. Then the epiphany that we likely got were we got in life as a result of a lot more hard work and struggles than our neurotypical peers.

Our children and grandchildren are growing up in a VERY culturally different world than we did, almost a complete opposite of what we experienced, for better and worse. The autism experience for people under 40, and certainly under 30, is a stark contrast to ours. So, it is often difficult for us to relate our experiences and give advice when we can't even imagine each other's experience. I know when I start writing about things like this, "When I was a kid,...blah, blah, blah." there's an edge of being a bit of a stoic, uncaring, cold-heartedness about it, but I never had any choice in the matter. It was what it was, and it shaped who I am. No excuses. My feelings don't matter. Just do what needs to be done. When I see some of these young people wallowing in their emotions to the point where they are suicidal and lost all hope, it just breaks my heart to know that culturally, we've created every bit of a destructive monster that I grew up with, just on opposite ends of the cultural spectrum. Hopefully, someday, we will look back at our mistakes and find some middle ground, because neither situation is good.

I would think every country, even those with rich cultural histories that go back thousands of years, has experienced significant changes over the past 40-50 years. As such, the autism experience has likely changed, as well.

See this is where I think it's been personally beneficial to be straddling several worlds. As a Xennial, we were the last to play unsupervised outside but the first to experience computers and internet as kids. I experienced much of the "tough love" and labor at home and subsequently what I consider a cultural shift or "awakening" to accommodate one's mental and emotional health (hopefully noted in future history books).

At the same time as a 2nd gen immigrant, we were steeped in our death grip cultural roots but also testing the waters of American/Western culture which often clashed, making us feel conflicted in our identity and still to this day we are now feeling repercussions of those traditional decisions. And then let's just throw Aspie in there too while we're at it. It's always half in and half out. Which I think could be more conducive to a "middle ground" if keeping an open mind, as I always see things more than one way.

I see some value in every way of life. I see the value of individualism but also having strong family culture, I see value in acknowledging one's mental and emotional state but also agree with you that the scale is tipped too far to where we are giving too much power to the point where people cannot function. We really do need to bring a balance.

 

[Mr. Stevens]

Thanks for posting this, Victor. This looks very interesting.

 

[Shevek]

I'm getting lambasted for growing up in a white, middle class home, but it was nothing like the popular assumptions about that in my case. I don't know anything about the programs to help "standard" AS boys, but I'm not impressed with the results. What I've encountered is a great deal of advice on how to deal with feelings, etc, that will usually generate easy sympathy for women, but gets men ostracized, and not because people "shouldn't feel that way." Psychology has not even begun to work on gender differences, let alone other factors.
On the question of cultural differences, there should probably be counseling differences as profound as any of the others. Americans are generally blind to the benefits of groups, and the realities of life in them.
Just last night, I was marveling at how vastly different cultures and languages are, but they can still find ways to develop very similar machines. In one delightful book, a Chinese apprentice understood steam as a white horse. My neighbour may think that he is trapping the Bear Spirit when he bolts the cylinder head on his snowmobile, but he still gets it on tight. For most of history, ironworkers were spending most of their time on superstitions, but they could get superb results. We only figured out Damascus steel a few years ago. Now, there are many videos about how to get a similar appearance, but not the incredible properties.

 

[Kayla55]

Well if you NT like you dis your friends and act like a martial arts hero!!

If he's asd probably go ahaa whenever he clicks what others are on, then proceed with insane rational logic!! (Detecting presence of brain in men is easy.....check to see if girls distract him, easily)

I can tell all of this without subtitles on.