~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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24 October 2010

World Autism Interviews: Aspie Teacher/Pennsylvania


Aspie Teacher is a woman diagnosed with Aspergers and wife of what she coins a "spectrumy" husband. She has a Bachelor's degree in Psychology and a Masters in Education. Aspie Teacher is a Community Outreach Director for the Autism Women's Network. Check out her blog, Aspie Teacher. She is passionate about sensory solutions and making the world sensory-friendly because she has several conditions that affect her sensory processing. In her free time she enjoys categorizing dog breeds and cooking.


E: In many communities, autism and disability are stigmatized. Do you feel autism is a stigma or taboo subject in Korean culture? If so, why?

Aspie Teacher: Autism definitely carries a stigma in Korean culture. The culture emphasizes conformity, so there's no place in the culture for anyone who is perceived as different. But it's not enough to be like everyone else; parents are obsessed with their child being the best. Everything an individual does is believed to reflect on their family, so if a child is perceived as weak or flawed in any way it would cause shame for the whole family, especially the mother who made raising that child her entire world.

Many Koreans think nothing of using hurtful slurs to describe anyone different. I've grown up hearing "animal" and the R-word being thrown around to refer to myself and others on the spectrum. That's what they say if they talk about it at all. It's seriously easier for families to withdraw from society than to risk hearing reactions like that.

E: What has been most frustrating to you in regards to how you might be perceived by other Koreans?

Aspie Teacher: Despite having grown up immersed in Korean-American society, I've always struggled to grasp and adhere to the culture's social rules. Because I don't do what's expected of me (such as following the crowd and trying hard to please people), I'm generally seen as too "independent" or just plain bizarre. (And despite what many people think, a fair amount of eye contact is expected in Asian cultures. I feel they can tell right away if someone is "off.") 

I've been in situations where because I didn't say the right things or react with the right social graces, other Koreans told me I didn't act Korean enough, or specifically, not enough like a Korean girl should. It was really more about my being a girl with an ASD and thus not knowing the subtleties of socially appropriate behavior, but the culture tends to describe unacceptable behavior as "acting white" because they have no other frame of reference. Like forgetting to say hello and goodbye has anything to do with race!

The irony is that when non-Asian people don't understand anything about me (such as when I pause before responding because of my auditory processing disorder or if I make a social mistake), they attribute it to my Asian heritage. When you're non-white, people automatically assume race explains individual differences.

E: Do you feel like you have to cover up, hide, or overcompensate for being on the spectrum around other Asians or Koreans? If so, how does this make you feel?

Aspie Teacher: When I was younger, I felt like even if I was giving 500%, it was painfully obvious I was always the person falling over my own feet socially and physically in any group of Koreans. Eventually, I started using a weird fake voice when speaking Korean, except I wasn't aware of it until someone I knew well pointed it out to me. And then I realized that I wanted so badly to fit in that I was overcompensating.

At some point it hit me that there was nothing I could do to cover up my autistic traits in order to fit in with other Asians. That was when I learned I could just be happy celebrating Korean heritage in my own life and that culture didn't have to mean fitting into some clique. I don't have to put on "the act" anymore, but that doesn't make me any less Korean.

E: Do you know of anyone else who is Asian and also has a diagnosis of ASD? If so, have they expressed any of the same cultural struggles as you?

Aspie Teacher: Yes, and the most commonly expressed concern is not being able to talk about their experiences openly within the culture. They mention feeling alone and misunderstood within the culture. Not everyone who is Asian with ASD mentions feeling completely excluded from the culture, however.

E: In general, do you feel most Korean parents are likely to look into further diagnostic testing if either they or others (e.g. teachers, relatives) notice non-standard development? 

Aspie Teacher: While it's changing among some more informed parents, there are still plenty of Asian parents who refuse testing despite strong suspicions that their child has a developmental disorder. They'll even secretly admit that the child needs help yet refuse testing because they don't want the label to stigmatize their family. Beyond that, many parents will choose to focus on potential giftedness (if it exists) because that's all they want to see. And then they hope that any developmental or social skills issues will disappear or be overshadowed by achievement.

I've also noticed teachers failing to identify Asian students with potential ASDs. Teachers tend to stereotype Asian students as quiet and antisocial so they dismiss possible autistic traits as cultural differences. And because many Asian parents are hesitant to challenge authority and less likely to have accurate information within the community, they're less likely to speak up about testing if they have any suspicions and a teacher or doctor does not mention it.

E: Do you feel accepted and understood by the Autistic community, regardless of your cultural background?

Aspie Teacher: Race and cultural background haven't been obstacles to being accepted or understood by the Autistic community, although sometimes I wish I knew more people who've been through similar experiences with both autism and race.

4 comments:

  1. I really appreciate this post, getting the opportunity to hear about your experience of growing up Autistic and from a different culture. I don't have Autism, but I don have Non-Verbal Learning Disorder, which has similarities to Aspergers and some NT aspect too, so I can relate to some of what you said in general.

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  2. Glad to have you as a reader, Autism Mom Rising. :)

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  3. @AspieTeacher: Have you read Roy Richard Grinker's account (in his book "Unstrange Minds", or perhaps in a lecture or presentation of his) of the evolution in the public discourse about autism in Korea? If Grinker is right, it sounds like it's been sort of like Bettelheim's 1950s America on steroids, but that attitudes are finally starting to change.

    Also I think the things you say about race are also applicable to ethnicity that doesn't involve a particularly well-defined racial difference between populations.

    The lack of understanding of the range of autistic aesthetic, sensory, and social sensibilities in my own ethnic community (Jewish) can sometimes be striking, even as positive values are sometimes placed on autistic cognitive and behavioral characteristics (think of sacred-texts scholars with photographic or near-photographic recall of source materials, or of the body language of silent prayer).

    (Of course, the Jewish community is as much a multidimensional spectrum as the Autistic community, though perhaps in somewhat different dimensions :-).)

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  4. Phil - Glad you brought up Grinker's book; I have read parts of it. Even in a DSM-V meeting in the last few years, someone from Korea tried to make the case that many South Korean cases of ASD were caused by working mothers and lack of maternal affection. That sounds awfully familiar, doesn't it?

    My husband is Jewish and he's had many similar experiences. It's okay in the culture to be just a touch autistic, but tip the scales too much and you wind up rejected. And somehow for both cultures it's more acceptable for boys than girls, because you need girls to grow up to be your family's social glue.

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