Autism, Culture, and Representation

Last Thursday, I found myself in a dark open space in the Video Studio at the Dudestadt for the 2012 Disability/Culture Symposium. There was an intimate group of people seated in a semi-circle, listening intently to the speaker. Although I was late to the Symposium, I immediately felt welcomed into the room and comfortable with the setting.

This was the kind of event that really changed my perspective. The more that I learn about Disability Studies, the more intrigued I am by the variety of disability cultures that are out there. It’s fascinating to hear about the different ways that people cope with their disabilities. Activities ranging from dance and physical movement to learning expression through artistic mediums can all help individuals in different ways. The videos that I saw of the Wobbly Dance were just incredible to watch, and I was really excited to hear about opportunities for art students to work with autistic children in Japan.

I think that these alternative means of working with disabilities can be so much more beneficial than some of the more standard therapies that aim to cure disability. What’s interesting to me is that there are so many people who are entirely unaware of the rich disability culture that exists in our world today. I think that the integration of education about disability culture is absolutely crucial, especially since disabilities are often unlooked. My own perception of what a disability is as well as what it means to have a disability has changed so much over the past year because I have been lucky enough to take a class that exposed me to the culture of Autism.

I’ve also started reading With the Light: Raising an Autistic Child by Keiko Tobe this week, which has been entirely different from anything I’ve read about autism. I’ve never really read manga before, so that in itself has turned out to be an experience. I never expected that it would take so much effort to get used to reading from right to left. While manga is still a bit confusing to me, there’s no doubt that it brings something to literature. As the mother Azuma learned about her child’s autism, it was interesting to see how her facial expressions were depicted. Manga also enables the reader to follow the author’s train of thought better  with the illustrations in addition to the text.

More to come about my perspectives on the book !

After repeatedly encountering the phrase “Rain Man” in various works about autism, I’ve been hoping to see the film for a while now. At the same time, I was hesitant to see the movie that really created the autism stereotype.

Even so, I was not at all prepared for it. Not only was the representation of autism incredibly stereotypical, but the majority of the movie was just downright painful. I expected there to be some tension between the Charlie and Raymond, but I had no idea that it would last for more than an hour of the movie. I felt like I was sitting there just watching abuse.

It was one of the hardest movies to watch. I don’t think I’ve ever been so tempted to leave a movie unfinished, but I felt obligated to see it. I couldn’t see how it would ever be a “funny” movie, as was said on the back cover.

Anyways. I was especially intrigued to learn that the person who Raymond’s personality was based off (since this was somewhat based on a true story) was a person who did not have autism. It’s kind of ironic that the character who came to define autism as a form of genius was based on a person who was not autistic. What were perceptions of autism like before this movie came out?

While it was blatantly clear to me how this movie created stereotypes, I did think it was interesting that autism was portrayed in an adult. Since the predominant stereotype of autism is something only children have, I was surprised that they chose to represent autism in an adult. How did autism become stereotypically a childhood disorder?

Although it was painful to watch, Rain Man has helped set up the context I needed to better understand some of the stereotypes still prevalent today.

During a busy winter break in India, I read Roy Richard Grinker’s Unstrange Minds: Remapping Autism. I came back to Ann Arbor eager to learn more abut autism and sad that since my English class had ended, I wouldn’t really have a chance to do that. After trying out a variety of English classes, I was having trouble finding one that I really liked that fit my schedule.

I had been thinking about the idea of doing an independent study, but it seemed unlikely that I would be able to make it happen this semester. Luckily, thanks to Melanie’s enthusiasm and flexibility, it turns out that I will be doing an independent study this semester!

I’m going to start by delving deeper into the controversies that surround autism that were introduced in my English class last semester, English 416: Disability Cultures, Autism, Culture and Representation. After exploring these at a greater depth, I hope to focus in on how autism is represented through fictional characters in children’s literature or how literature is used to help children understand autism.

To dive back into autism, the facts, and the controversies, I read Stuart Murray’s Autism. It provided a great introduction to autism in just 100 pages.

One of the things that I found most interesting was Baron-Cohen’s idea that “suffering is integral” to autism (p 21). Suffering implies that those who are autistic are all in pain, and that their life is in some way compromised in comparison to the life of ‘normal’ people. The integration of the word ‘suffering’ in the understanding of autism reflects not only how autism is perceived as an abnormality, but also how it is a form of illness that needs to be cured.

The term ‘triad of impairments’ was also new to me (p. 25). I am interested in understanding how the definitions and the use of this phrase has evolved over time.

Hello Again!

I can’t help it. After just a few days, I’m back!

The funny thing about keeping a blog is that after awhile, you start thinking in blog posts. And when that happens, there’s no point in resisting it; and so, here I am.

After a crazy final-full day, I’m officially DONE. Which comes with many complicated emotions of joy and sorrow and even fear. But one of the things that kept me going today was looking forward to my trip to India over this break as well as my trip to the library after my last exam.

During a study break, I made a list of books that I could get for my trip to India. After Prof. Yergeau introduced me to Unstrange Minds by Roy Richard Grinker, it was first on my list. The book had been sitting on my bedside table for about a week, and I spent a lot wanting to stop studying to read it. The chapter about India was incredibly interesting, and since I’m the kind of person who has to read a book in its entirety to be satisfied, I just had to get it. And now, it will be accompanying me to India.

That’s really all I have to say, but I’m excited. Because the fact that this class over yet it is still influencing me just proves how great it was and how much I’ve learned. I’m hoping to see what I can learn about autism in India while I’m over there, and there will hopefully be more posts to come!

The Beauty of Autism

It’s hard to believe that months have flown by since the beginning of this class. It’s hard to grasp just how much I have learned and how entirely different my perspective on the world is. It’s hard to see it coming to an end.

One of the most important things that I have learned in this class is that there is a ‘culture of autism’. This community of autistic individuals allows people to accomplish many things and fulfill many goals.

This clip about The Culture of Autism was created to honor this vast community. As I watch this clip now, I can’t help but reflect on all the things that we have talked about throughout the semester: all the controversies, all the questions, and some of the answers that we found.

If I had seen this clip just 15 weeks ago, it would have left me very confused. There are many things that I had never been exposed to before. I didn’t even know that there was a culture of autism. Because I didn’t understand autism, I blindly believed in the cure, thinking ‘who wouldn’t want to be cured of a disability?’. But after actually learning about what autism is and how it affects people, after hearing the voices of autistic individuals as they speak for themselves, it is clear that there is no need for a cure.

Autism has created a culture of beauty, a culture that can stand on its own two feet and contribute to the neurodiversity of the world. Neurodiversity: another word that I was unfamiliar with. It amazes me that even with all the emphasis through my education about the importance of diversity, I never really applied this theory to disabilities, especially not neurological disorders like autism. The idea that “neurodiversity… is expressed in more than just the brain” would have been entirely foreign and new to me.

Although this blog post marks the end of the class, it by no means marks the end of this blog. I really hope that I will be able to return to it once and a while in the future just to keep track of the way that this class has influenced me. I love the art of blog-writing, and I have to admit that I’m going to miss these weekly blog posts.

And so, the take-home message is this.

Autism is a culture. Autism is a people. Autism is a way of life. Autism is not a problem, but a beauty.

Books are one of the best and worst ways to learn about autism. While books allow readers to get inside a person’s head, they are not always written to be accurate depictions of autism spectrum disorders. Even so, I do believe that there is something to be gained by reading each of following 4 books about autism:

Haddon’s book in particular was one of my favorites. This fictional book was written to be just that: fiction. Haddon has had little experience with autism, and in no way does he claim to be an expert. While Haddon never explicitly states that Christopher is autistic, his personality and tendencies seem to align with autism in many ways.

This brings up an assortment of questions about the representation of autism in literature. When is an autistic character’s depiction considered to be “accurate”? Autism itself is so diverse, and it is represented by different individuals in so many different ways. Christopher appears to embody many of the stereotypically autistic characteristics: his absorption of information, his natural talent with numbers, his social anxiety, etc. Although the author may not have known a lot about autism, this book can still be interpreted as a representation of autism as long as readers accept Haddon’s work as fictional.

I, personally, was glad that Haddon never attached the label of ‘autism’ to Christopher’s personality since he did not try to make it an accurate portrayal. I thought that this was a good way of allowing Christopher’s personality and traits to speak for him and allowing a reader to focus on his character instead of his disability. At the same time, his autistic tendencies are obvious enough that omitting the label of ‘autism’ may not have made a difference. And since this is a work of fiction, including the word autism would not necessarily have meant that Haddon had done his research.

Even though it may not be entirely accurate because of the author’s limited exposure, there is a lot to be learned about autism through Christopher’s interactions with the world around him. Seeing the world through Christopher’s eyes creates a whole new perspective. Even though autism is never spelled out, it is clear that Christopher struggles in social relationships and perceives the world differently. Although Christopher is the main character, this book is not only about autism. It also explores his relationships with other individuals like his father and mother as well as interactions amongst his neighbors.

The Curious Incident of the Dog in the Night-Time changed the way that I thought about autism in young children because it helped me to understand some of their behaviors. This book is a must-read not only because of its unique first-person narrative by an ‘autistic’ child, but also because it is well-written and entertaining. Christopher welcome the reader to embark on a journey with him to solve the ‘curious incident of the dog in the night-time,’ and his adventure does not disappoint.

Jasmine’s Mother

Jasmine’s mother sat at the kitchen table and watched as Priya led her daughter to her seat. She watched as Priya handed her daughter her plate of food. Jasmine’s mother watched as Jasmine stared down at her plate, eating quickly. Priya guided Jasmine out of the room and to the car below.

**

Jasmine’s mother remembered the family reunion 10 years ago. She remembered how Jasmine had sat in the corner of the room, hunched over and focusing intently. The other kids were all outside playing cricket, but Jasmine had refused to go with them. She sat there, drawing portraits of each family member present. Jasmine’s mother tried to tell her to put away the drawing pad and go play with the other kids, but she would’t listen. The brothers and sisters, uncles and aunties, paattis and thathas, were all watching them; they would turn to look towards the corner, stare, then turn to the person beside them and whisper in disapproval.

Finally, Jasmine’s mother grabbed the drawing pad from Jasmine. Jasmine reached for it, yelping with discomfort. Her mother set the drawing pad on the ground, grasped Jasmine’s hand, and quickly pulled her outside of the room and away from the watchful eyes of the family.

I’m really glad that this exercise gave us the opportunity to further expand on the character we previously developed. It was really interesting for me to approach my character’s life from behind the eyes of her mother. I found this to be a lot easier than the previous exercise because in developing my autistic Jasmine character, it had been necessary for me to understand the family dynamics in her household. I had already thought about what her parents and their relationship was like, so writing this character description came a lot more naturally.

Part of me wanted to branch out and explore some of the parenting controversies that really complicate the roles of parents, but I decided to stick with the story that I had started because I felt like I would rather delve deeper into this family. Just as autism manifests itself very differently in children, parents of autistic children react in a variety of ways to their child’s autism.

I found that Jasmine’s mother largely fits Sinclair’s description of autistic parents. She is someone who mourns her child’s autism as a deviation from the norm so much so that she finds herself embarassed and ashamed of Jasmine’s behavior. Although Jasmine has been diagnosed with autism, it is something that remains unspoken. Jasmine’s parents have not confided in anyone about her diagnosis, not even Jasmine herself.

If I had more time and space, I would further explore Jasmine’s mother’s ways of coping with Jasmine’s autism and how she tries to ‘normalize’ Jasmine. I would examine how Jasmine’s autism was first discovered, and how her parents reacted to the diagnosis. It would be interesting to look at how things within the household changed and how their interactions with Jasmine were different.

I think that autistic parents are often pitied by the general public as though having an autistic child is a heavy burden. While autistic parents may misunderstand autism, I think that many are often misunderstood themselves. Autistic parents are stereotyped and looked at differently just as their children are.

In places like India, I think many parents of autistic children have a similar attitude as Jasmine’s mother does. That being said, I think that this is stereotyping and is not entirely fair either. Autistic parents react to their child’s diagnosis in very different ways, but I do think that the society around them has an effect on their reactions.

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