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.

17 October 2010

World Autism Interviews: Socialworks/Toronto, Ontario

Socialworks is a single mother of one child. She has a Bachelor's in Social Work with a minor in Public Administration, as well as a Master's in Social Work. She spends her time in community advocacy, namely accommodations and housing education. Socialworks is the Organizer for the Toronto Autistic Adult Network self-advocacy group, which started up in 2009. She enjoys cars, chess, home renovation projects, listening to all kinds of music, mechanics, and soccer. She's also a Star Trek fan (except for the most recent series).

E: How old were you when you received a diagnosis, and how did your family respond to the news?

Socialworks: I was 29 years old when I received a diagnosis. I was treated for depression and anxiety, and after being put through a bunch of medications that did more harm than good, I was assessed as having bipolar disorder. I did nothing with the diagnosis because it meant nothing to me. I was unable to see the mood swings that were supposedly evident in my vague generalizable answers. When I joined a local bipolar group and heard the stories and difficulties people lived with, it was then I knew I was not bipolar.

After having a 'meltdown' that landed me in the hospital, it was almost impossible to get professionals to listen to me because I was a "person with bipolar disorder." When asked what I needed at the hospital, I mentioned that I could not go home. They never asked me why. They didn't ask what I was reacting to. I was simply "bipolar."

I was put on medications again. But my routine was interrupted when the pharmacy fixed an error in the dosage and didn't tell me. I was functioning at a basic level, and with that medication change, I ended up in the hospital again a week later. I knew it was a medication switch, but no one was listening to me. In retrospect, I could have died because I was being given medications intended for individuals who are bipolar. Instead, I was autistic and didn't know.

Since I live alone, my family had no idea what was going on.

Months later, I decided to examine the root causes of my issues and the things I have difficulty with. I had to identify social norms and redefine the obstacles I was facing. It was then that I found my issues to be sensory related and went on to seek non-medicated ways of addressing the issues.

I was diagnosed during a three-session Cognitive Behavioural Therapy assessment for anxiety and depression.

Unfortunately, I had to struggle with the doctor to get the diagnosis because the doctor felt that labeling me wouldn't do much, and that there wasn't really much support for adults with Asperger's. I didn't care. I wanted the formal diagnosis so I could decide for myself what it was I wanted to do with it.

My family has been neutral about the issue. They have little to say and don't seem to be too interested in understanding. I don't think they believe me because I have been able to accomplish many things. Autism is apparent with other family members who either have persevered and have not experienced systemic difficulties that would force them to take a second look, or they live in environments where autism is never discussed.

I have also been bullied by relatives who don't understand Asperger's, and likely never will because I have chosen not to disclose to them for my own safety.

E: In many communities, autism and disability are stigmatized. As an African-Canadian woman, do you feel autism is a stigma or taboo in your family? If so, why?

Socialworks: It is definitely considered taboo in African and West Indian-Canadian cultures. Many times, children with developmental disabilities are ignored, and when you are raised like that, 'coming out' to family is an uphill battle. Oftentimes, adults are mocked, ridiculed, or belittled. And the more we speak, the more familial disdain becomes apparent. You're not just outing yourself, you're also outing your family. There are few spaces to talk about disabilities in the African-Canadian community.

Although I have autistic members in my family, I wouldn't consider autism open for discussion. There are fears of labeling yourself or being labeled by others that, historically, we as a community have tried to get away from. It just is what it is...hidden.

E: Have you ever felt misunderstood by family members or friends who expect you to behave in certain ways?

Socialworks: In my family, being seen as a strong individual has oftentimes made it difficult to be heard. Subjectivity plays a huge part in how my family understands my difficulties. I tend to keep it to myself instead of trying to get them to understand. I can speak, but speaking is not my first method of communication, as it is quite tiring. Add in the emotional piece that exists (even if you can't tell) and the whole experience can leave me unable to function afterward.

In regards to being misunderstood, I find that the old "You don't act autistic" attitude exists within my family. Sometimes my autism is hard to see. I've also focused a lot of energy over the years trying to fit in. I lived with a belief that such challenges (of fitting in) was a skill that would be beneficial to have as I moved forward. It got much harder as I got older.

My family doesn't see me when I not 'on' for the most part. They don't understand why I spend so much time at home alone, and why I don't react positively to spur of the moment invitations outside of the home, or to invitations to most social gatherings. My family never asks, and only recently did I know what was really going on myself. I grew up being called antisocial, selfish, narcissistic, "having emotional issues," strange, weird, etc.

My behaviour is what has been misunderstood for most of my life.
My family doesn't understand why I won't go certain places, why I can't work in certain spaces, why I'm a picky eater, why I feel cold most of the time, why I don't speak much in groups, why I carry all of my heavy grocery bags at once, why I go grocery shopping rarely--and only during the wee hours of the morning, why no one really visits me, why I've worn dark coloured clothing most of my life, why my walls are virtually bare, and why I seem to avoid most things others find appealing.

They do not understand, and I no longer see much of a benefit to them gaining an understanding. It's important to be understood to a degree, but it's more important to understand yourself. It is only then that you can decide for yourself who you want to be. Anything less (i.e. being defined by what other people tell you you are) tends to hurt the self-esteem.

E: What has been most frustrating to you in regards to how you might be perceived by others who share the same cultural heritage (do you feel you have to cover up, hide, or overcompensate for being on the spectrum)?

Socialworks: I think the fact that attitudes and assumptions are the same, if not more, by others who share my cultural heritage. It is frustrating to try and share a part of your identity when doing so sometimes closes the doors to being seen as a human being, or "more than just [this or that]..."

I will say that I have been in various spaces where, based on discussions--which had little to do with ASD--it was clear that I was not in a safe place to be open about myself. Hostile discussions around gender roles, sexuality, race, cultures, education, and the reinforcement of linear thought around these issues have repeatedly told me that if I speak out on any of these topics, my social location alone would set me up for a battle I can't say I am always up to fight.

For the most part, I feel neutral about it all. The only times I get heated is when my apparent neutrality makes it difficult for others to believe me when I say I am experiencing some sort of emotional difficulty. Then I feel frustrated. It is then, and only then, that I wish I could better communicate my feelings so as to avoid the doubts of others.

E: Do you know anyone else of color, on the spectrum, who has also expressed similar cultural struggles?

Socialworks: Yes, I have met other people of colour who have a diagnosis of ASD, and we share similar struggles. Our age differences, access to opportunities, and general life experience may play a role in how we internalize societal pressures to hide or fit in, but the issues are the same.

E: In general, do you feel a healthy percentage of African-Canadian parents are likely to look into further diagnostic testing if either they or others (e.g teachers) notice non-standard development?

Socialworks: The scars of black children being labeled in the school system and streamed are still there, so many parents are hesitant to seek a formal diagnosis for their child, and when they decide to, service providers rarely approach assessments with a deeper understanding of the complexities around disability within culturally specific groups.

It can be tough for any parent to accept that their child could be having difficulties. I do not believe that more parents will look into further testing without community outreach. If parents seek services through the school, they have to keep in mind that schools are not necessarily eager to swallow the costs of assessments. In addition, once a child has been assessed, the school must take action. Add the fears of the parents, and the fears of the school being seen as labeling another black child and/or labeling too early in the child's development, and nothing meaningful really happens.

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

Socialworks: I do know that I have not felt rejected by the Autistic community because of my cultural background. At the same time, I don't feel included. I see it has another dimension to the third person perspective I find myself in most of the time as an Autistic adult.

E: Is there anything I have not asked, you would like to share?

Socialworks: The most frustrating thing is that people rarely ask why. If we begin to ask why, and if we value the lived experience of individual persons at least as much as we do those who perceive, we could dispel a lot of misconceptions. We need to take into account some of the cultural attitudes we have around autism and disabilities, as well as open up spaces for understanding and change. We need to help others fight for and access needed services in ways that protect the dignity of individuals, as well as their families and communities.

11 October 2010

2010 ASAN - OHIO Protest Against Autism Speaks

ASAN - OHIO had a successful protest against Autism Speaks in Columbus, Ohio at Ohio State University. The four-hour protest attracted media attention, in addition to independent reporters. Protesters raised the same points as other ASAN chapters:
  • Autism Speaks funnels only 4% percent of solicited monies back toward the families and communities it drains.
  • Autism Speaks fails to include autistic people--other than in token ways--in their decision-making.
  • Autism Speaks puts monies toward eugenics.
Autism Speaks' walkers addressed ASAN - OHIO protesters with:
  • "Autism Speaks can't have autistic leaders or board members because autistic people are incapable of making important decisions."
  • "Are you all stupid? You're all stupid!"
  • "Go home! You suck!"
  • "You're a bunch of idiots!"
  • "How do you sleep at night?"
ASAN - OHIO responded with slogans such as, "Nothing About Us Without Us!" "Autism Speaks needs to listen!" and "2, 4, 6, 8, Autism Speaks discriminates!"

State Representative, Ted Celeste, stopped by to listen to, as well as applaud ASAN - OHIO for their message. "You're all heroes," he commented. 

Benzion, an autistic person in support of ASAN - OHIO, said, "Autism Speaks is focusing on curing autism...not being able to live with, not integrating autistics. Two years ago, I very naively came to Autism Speaks to walk for autism, until I learned I was a disease that needed to be cured."

To view footage of ASAN - OHIO's protest, click here. To view their blog, click here. To view the ABC news report, click here.

09 October 2010

Yay, Terrariums!

Once a month, my dear friend Dora and I make time for a play date. And not just some slop-shod-devil-may-care date. We compose an agenda and approve it before we get together (through trial and error, we have come to realize that our agenda must be created and emailed--by either one of us--at least two days before our rendezvous.) No agenda, no date.

Today's agenda:
  1. Meet at Dora's house.
  2. Drive to Blossoming Lotus for lunch.
  3. Drive to Wonderful Terrarium Place in SE Portland.
  4. Head back to Dora's house and gleefully take pictures of our terrariums in Dora's art studio, sit down and talk about our computers (Dora just got a new business Mac that Elesia is so very jealous of), and then talk about either our recent business trips or current writing projects until we run out of communication bandwidth.
Now, I'd like to know who's behind those myths out there that say autistics aren't capable of making friends.

05 October 2010

World Autism Interviews: Mei Ye/Portland, Oregon

Mei Ye is the mother of an autistic son, and the wife of a self-diagnosed autistic husband. She is trained in multiple engineering fields, and works as a system software engineer for the computer industry. Mei grew up in what she describes as the ascetic pre-industrial era of the 70s and 80s in China. She has spent most of her adulthood in the States as an observer and thinker.

E: Autism is often stigmatized in American culture. Do you feel autism is a stigma or taboo in Chinese culture? If so, why?

Mei: Yes, most Chinese have little knowledge of autism. They most likely consider it as a mental disorder. Family pride is deep-rooted in Chinese culture.

E: Have you ever felt misunderstood by family members or friends who expect your son to behave in a specific (or traditional) way?

Mei: Yes. Years ago, a Chinese woman scolded my son--who was then four years old--for not sharing with her two-year-old at a party.

E: How did this make you feel?

Mei: I forgave her ignorance. I discussed autism with her. She is an understanding person. Years later, I heard that her son was diagnosed with autism too. The rate of autism occurrence is indeed astonishing.

E: Is there anything that frustrates you in regards to how your son might be perceived by other Chinese people?

Mei: I am a person who does not care about other people's perceptions. I have jumped many hurdles in my life. I am always learning, thinking, and looking for my spiritual and intellectual allies.

E: Does anyone else in your family have a diagnosis of Autism Spectrum Condition? If so, have they expressed similar cultural struggles?

Mei: My cousin in China observed autistic behaviors in her two-year-old. Her family is in dismay and denial. There are very few specialists in China who can diagnose autism.

E: In general, do you feel most Chinese parents are likely to look into further diagnostic testing if either they or others (e.g. teachers, relatives) notice atypical development in their child?

Mei: Chinese care deeply about the wellness of their offspring. Chinese people are good followers. If one of their respected relatives or friends sets a good example, they will follow. So it is very important for families like mine to be open and honest on this issue.

E: Is there anything else you would like to share?

Mei: I am passionate in finding the best education model to grow and harvest the giftedness part of autism.   

Survey News

Got an extra 15 - 20 minutes? The survey posted below received full ethical approval from the Institutional Review Board and contains consents. It examines the relationship between the autism spectrum and Internet use, identity (including language use and neurodiversity), and visual perception. Scores are completely anonymous, and it's for any adult--or child of at least 7 years in age--who is diagnosed on, and/OR who self-identifies as on, the autism spectrum. Participants may receive help if needed.

Click here to reach the survey.

Steven Kapp
PhD student, Psychological Studies in Education
UCLA Graduate School of Education & Information Studies
Co-Director, Autistic Self Advocacy Network - UCLA/LA Area