Autism, Culture, and Representation

Archive for November, 2011

An Invisible Representation of Autism

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.

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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.

Evolution of Autistic Identity: Unbound by Labels

I have to admit, even after reading the entire first part of Songs of the Gorilla Nation by Dawn Prince-Hughes, my favorite part was still within the first 8 pages. It was this moment, this description of how Prince-Hughes first connected with gorillas. It lasts a mere two paragraphs, yet these two paragraphs are what stood out to me the most.

This moment was the first time that she was able to feel connection that she had never felt before: love. There was a sense of comfort that arose from the situation, one that was entirely new to her. She was overcome by strong sentiments that left her more aware of the unknown.

What’s interesting to me is that this was the beginning of her connection with gorillas, a connection that helped her to cope with her autism. Yet this initial moment occurred before ‘autism’ was even a part of her. Her identity as an autistic had yet to be born, but still this moment was powerful enough to change her perspective. Although the diagnosis of autism certainly changes a person’s identity, autistic aspects can manifest themselves in people without the label.

Prince-Hughes shows how her identity was perpetually evolving. She follows her past, from before her diagnosis to after, and examines how interactions with gorillas changed her. But what is most intriguing is that these changes do not have to be as dramatic as diagnoses. They may be subtle and simple. This moment of touching a gorilla and looking into his eyes may seem like an ordinary event, but it made an impact on the author. And in doing so, it changed who she was.

The evolution of an autistic individual is not merely defined by diagnosis. Their identity changes both before and after they become ‘autistic’. I think that autism is certainly an aspect of their identities, but that it does not necessarily define who they are. I like to think of autism as something that shapes individuals, and it is these characteristics and representations that are continuously changing. The label itself is just a label, but it is the characteristics that create the variety of autistic identities.

Speaking Up Amidst Silence: Autistics Speaking Day

Today, November 1st, marks the second annual Autistics Speaking Day. And I am honored to be a part of it.

Autistics Speaking Day began in response to Communication Shutdown, a global fundraiser for autism. The idea behind it was that everyone should give up their facebooks and twitters for just one day, which supposedly simulates the social communication challenges that many autistics face. While this program silences neurotypical people around the world, members of the autistic community are speaking up and protesting against it.

This fundraiser has upset many people who question the accuracy of this simulation of autism. Especially considering how the internet plays a huge role in connecting members of the autistic community. There’s also the question of whether surviving without these things for one day really does anything to reach a “greater understanding.” Does internet abstinence create “a sense of disconnection and a sense of frustration” that actually allows people to empathize with autistics?

For me, Autistics Speaking Day is going to be my chance to reflect on just how much more aware of autism I have become. With the semester half-way over, it is absolutely incredible how much I have learned through this English class. Just two months ago, all I really knew about autism was that a lot of kids have it and more and more people are being diagnosed with it. And studying something like autism from a literary perspective sounded really interesting to me.

But I had never thought about how many adults have autism. I didn’t know that an autistic community even existed online. I was unaware of the numerous controversies around autism and the various perspectives that people have. Neurodiversity was a concept that I had never even heard of.

The best part about it is that everything I have learned has come straight from blogs written by members of the autism community. That’s why Autistics Speaking Day is such a great way to truly increase awareness. On November 1st, instead of staying off the internet, neurotypical individuals should be reading blog posts written by autistic community members. Because hearing about autism from people who have it is the best way to somewhat understand.

The internet has broken down a lot of the barriers of social communication that many autistics face. It has opened up an entire autistic community, and people should be exploring these blogs to learn more about autism. Autistics Speaking Day recognizes how the internet has introduced new opportunities for communication like blogging by overcoming physical distances and eliminating social interaction barriers.

On Autistics Speaking Day, the internet will explode with the voices of autistic people. The autistic community has a lot to say, and the internet gives many people the gift of speech. I hope that instead of staying away from their computers, people will be perusing autism blogs and opening their eyes to the autistic community.

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