Autism, Culture, and Representation

Archive for October, 2011

Jasmine

Jasmine woke up to the sound of autorikshas honking. Priya was calling her name too, but she didn’t hear it. As the clock turned to 6:00 A.M., she opened her eyes and Priya took her hand and led her to the bathroom. After getting ready, she sat down for breakfast next to her mother. Priya had already brought out upma for the family, and she was just returning with dosa and sambar for Jasmine. The family ate their breakfast in silence, listening to the chorus of car honks pouring in through the window. Priya led Jasmine down to the street and helped her get into the car with the driver, Sahil.

Jasmine closed her eyes.

***

Jasmine opened her eyes.

Priya helped her out of the car and walked with her to classroom A. Jasmine sat down in her seat in the far left, at the very back corner of the room. She took out her notebook and began drawing. She drew her father and her mother. Just like she did every day before class started. The first class was math. While Sir talked, Jasmine copied his work from the board with her right hand and held her calculator in the left hand. Sometimes when she needed it other students would borrow her calculator and replace it with flowers. After that, Jasmine would get very anxious and would not be able to sit still anymore.

After math was French. Jasmine spent French class drawing her grandmother and grandfather and anticipating her next class. Science was her favorite class by far. She always raised her hand to answer questions, but madame always called on other people. She did all the science labs by herself and would draw her brother when she finished.

During lunchtime, Jasmine would eat her lunch at her desk and watched. She watched all the other kids eat together and talk and play. After lunch was literature. She would read with the other kids and when she got bored, she started drawing a bookshelf. Last was geography. Jasmine already knew all the countries and their capitals, so she took this time period to draw herself.

And tomorrow it would start all over again.

—–

At first, I was not particularly fond of the idea behind this task. By being told to create an autistic character, I felt like I had to design the autistic characteristics of Jasmine. I felt obligated to highlight her autistic traits so that her autism would be apparent. To consciously create an autistic character, and in so few words, made it inevitable that autism would define her as a character.

I definitely found this task challenging. After just finishing up The Curious Incident of the Dog in the Night-time, I first found myself fantasizing about creating the character of a young boy with autism. I mean, I could totally hear his voice in my head. When I realized where that not-so-ingenious idea had come from after all, I tried to break away from Christopher and away from the common stereotype of autism in little boys. But then I started thinking about how autism is always depicted in children, and I wanted my character not to fit that stereotype either.  And I was worried that there was no way I would have the words to actually develop a character.

This is the first time I ever wrote about something and someone Indian. I chose to make Jasmine Indian because autism in India is a seriously underdiagnosed and overlooked problem. Indian society can be closed off and unaware of conditions like autism. Even medical professionals often misdiagnose or overlook autism. Because of this, many Indian children are not diagnosed and do not receive the proper treatment or care.

If I had more time, I would further illustrate the point that Jasmine does not know that she has autism. She does not know why she is different. She sees things happen around her, but because her condition has never been explained to her, there is no way for her to understand.

ABC’s: Autism Blog Carnival (Autism in Books for Children)

While children’s literature often seems simple and straight-forward, autism in/and children’s literature is not nearly as easy as the ABC’s. The complex and controversial nature of autism manifests itself even within the realm of children’s literature. Controversies arise in two distinct realms: how autism is integrated into children’s literature and how children’s literature is integrated with autistic children. There are many different perspectives concerning both of these controversies. This blog carnival explores these differences and controversies in an effort to make sense of it all…

A is for Autism AND Children’s Literature

One of the main things that I looked at was how autistic children are first introduced to literature and how literature can affect autistic children.

MOM-NOS describes just what a miraculous effect reading can have on a child with autism. She talks about how reading a picture book enabled her son to achieve the unacheivable: the ability to empathize.

The act of reading with autistic kids is also very different. Kiera Parrott limited the “multi-sensory activities” and outlined the program so that the children know what to expect. She was understanding about how autistic children may not always appear to be listening. Autistic children are introduced to literature in different ways.

Spectrum Mom explains how she tried to guide her son towards books with numbers, his passion, but he remained indifferent. She addresses how some try to guide them towards the norms of their age, and others have a hard time getting their autistic child to stop reading.

In a different post, Spectrum Mom compares autistic children to reluctant readers. She recommends using books with less words in bigger fonts and more pictures to make the book less overwhelming to both autistic and reluctant readers. Autistic children, however, need pictures to be exact representations of the text while reluctant readers tend to find their interest in whatever is popular.

As autism continues to grow, it is becoming more and more prevalent in children’s literature. With this increase, books about autism are becoming more kid-friendly. Pamela Paul discusses this change and the book “How to Talk to an Autistic Kid” by Daniel Stefanski, written by an autistic youth to an audience of non-autistic people.

There are a variety of approaches to integrate literature into the lives of autistic children. I think that the best way to do this is to experiment with the child and to understand that every child is different. It is important to balance the encouragement to read with a child’s autonomous decision. Children need their parents to be supportive so that they can take their time and discover what interests them in literature. Parents must be willing to accept that their child may have no interest in literature, which doesn’t have to be a bad thing.

I can understand why this would concern many parents. But at the same time, I think that guiding the child while giving them a little space is the best way to let them find their own interests. Too much encouragement towards literature just pushes a child away, and it discourages them from reading instead of intriguing them. Parents are responsible for exposing their children to literature and presenting it in a variety of different ways, but the only way that autistic children will develop a lasting relationship with literature is if they themselves find what interests them about it.

An important component of guiding autistic children through the reading process is to be aware of how they might feel in the situation. The books that parents choose can have a huge influence on a child’s interest, and the way parents read to the child can also be a factor. Parents should be very patient with their autistic child so that the child feels comfortable at all times.

There is no doubt that literature can have a variety of positive effects on an autistic child. Autistic children can learn a lot from books such as emotions like empathy. Books are also another way that autistic children can learn more about things that really interest them. There are a variety of ways to introduce autistic children to literature, and there are numerous things that they can learn from it.

I is for Autism IN Children’s Literature

Another important thing to consider when looking at autism and children’s literature is how autistic individuals are portrayed in literature. Many bloggers were troubled by the current representation of autistic people in literature.

Nicole Caldwell emphasized the importance of representing disability in classroom literature. Just as incorporating multicultural literature into the classroom is important, Caldwell justifies the need for representing special needs children. At the same time, Caldwell cautions about the representation of disabled children in literature; it is important to choose books that depict disabled people as empowered equals instead of as pitiful inferiors.

While Bard agrees about the often inaccurate depiction of autistic people, describing this literary representation as a ‘flustercluck’, he has a different perspective on why the representation is flawed. He criticizes how disabled people are portrayed by claiming that they are essentially too empowered; their disability is either paired with heroism as compensation, or it is an obstacle to overcome.

Estee proposes that books about autism tend to have rigid moral meaning. She accuses many of the books about autism for trying to raise money for the cure, which makes them much less appealing to read.

Another fundamental problem in children’s literature for autistic kids is mentioned by Marvie Ellis: the diversity of race is not portrayed. This absence can make situations seem different and more foreign to autistic children of different races.

While many have critiqued the literary representation of autistic people in literature, Lili Marlene takes a different approach by suggesting that people look to “fictional autistic characters” to learn more about autism. She seems to be relatively in concordance with representations of autism in different media forms like film and literature.

Depicting disability in children’s literature is tricky because there is no right or wrong way to do it. On one hand, it is important for autistic people to be included in children’s literature. But at the same time, their identity as a character should not be determined entirely by their disability. While they should be depicted as ordinary individuals as opposed to heroes, their disability should be included as a part of who they are.

There is a difference between using a disabled character because of their disability and having a character who happens to be disabled. There is a balance in this as well; disabilities should be incorporated into literature, but not so consciously as to make the disability entirely define a character. It’s interesting that while some people are not content with current representations of autistic individuals in literature, others believe that these representations are fairly accurate. I question how accurate these representations truly are because often, they are fictional.

Literature has the power to show how diverse the manifestations of autism can be in different individuals. It can not only educate autistic individuals about different representations of autism, but it can also educate others about what it means to be autistic. Especially with children, it is an extremely powerful tool for them to come to understand their autistic siblings or classmates.

I can’t spell out how parents should integrate children’s literature into the lives of their autistic children. I can’t spell out how writers should depict autistic individuals. But nevertheless, it is important to explore the variety of different perspectives that surround each of these matters. And that’s exactly what this blog carnival was for.

How Society Disables Autistic Adults

On April 16th, 2009, AHEADD.org discussed topics relevant to adults with Autism and Asperger's Syndrome, such as education and employment.

April is National Autism Awareness Month.

April 2nd is World Autism Awareness Day.

April 16th is Adult Autism Awareness Day.

But there is no Children’s Autism Awareness Day. There is a day dedicated to adult autism awareness, but none for children’s autism. This disparity reflects a fundamental misconception about autism; autism is not just for kids. While there is a need to raise awareness of autism itself, the need to break the stereotype of autistic people as children is equally necessary.

Scott Robertson’s article about Neurodiversity, Quality of Life, and Autistic Adults introduces a troubling thought. There have been papers upon papers written about autism from a  biological, physiological, and psychological standpoint. But the study of the quality of life for autistic adults has been largely overlooked. Robertson uses Schalock’s (2000) 8 Core Domains to better understand the quality of life for autistic adults: self determination, social inclusion, material well-being, personal development, emotional well-being, interpersonal relations, rights, physical well-being.

When people think about autism, autistic adults are hardly in the picture. This exclusion of autistic adults as a community hints at an even greater problem: society creates most of the problems that autistic adults face. Society does this in one main way that underlies many other challenges..

We restrict the self-determination of autistic individuals. We speak for them, deciding what they want and do not want. We act as though we are aware of their capabilities and limitations, and as though it is our responsibility to be the voice that they do not have. In doing this, we ignore the basic human rights of autistic individuals, neglecting our commitment to certain ideals of ‘respect’ and ‘equality.’

One main way that society complicates the lives of autistic adults is by meddling with their roles in society, affecting their social inclusion and interpersonal relations. For years, we have crafted societal stereotypes of autistic adults, and we have used these models as a basis of understanding them inaccurately. Prejudice strips autistic adults of their individuality, and our ignorance to see beyond these misconceptions plays a large part in preventing autistic adults from being treated as ‘normal’. The ignorance to acknowledge that these misconceptions are even causing a problem further complicates the matter. Our social stigmas directly impact the relationships that autistic adults have with others. While we recognize that many autistic adults have difficulty with social situations, there are hardly any support systems available for them in this regard.

Their personal development as well as their well-being (in a material, emotional, and physical sense) is also hindered by the opportunities that society provides. Since we do not provide many living alternatives for autistic adults, many are trapped without autonomy in their parents’ households. As autistic individuals grow older, they watch the availablility of specialized support systems around them decline. Along with the deficiency of educational support systems lies the lack of mental health support. Their physical maintenance is restricted by how little people know about autism, which prevents them from being able to engage in many fitness group activities.

Many people think that autism is the problem but society has a greater impact on an autistic individual’s quality of life. Society is what causes many of the issues that autistic adults are forced to cope with. The moment an individual is acknowledged as ‘disabled’, society  strips away their power, their individuality, and their freedom.

The first step to erasing this inevitable misrepresentation of autistic adults is to acknowledge that there is a problem. Society must recognize the ignorance and the lack of resources in order to move forward. As society, a fundamental cause of the complications that autistic adults face, it is our responsibility to step up and address, not dismiss, autistic adults as enabled human beings.

References

Adult Awareness Autism Day: http://www.aheadd.org/adult-autism-day.html

Schalock, R. L. (2000). Three decades of quality of life. Focus on Autism And Other Developmental Disabilities, 15, 116-127.

Goldilock’s Rhetoric: Language as a Door or a Mirror?

In my excitement to respond to Bard’s guest blog post, I didn’t do the best job with following instructions. So instead, I’m going to use this blog post to not only reflect on the readings but also on her comment.

In my comment, I asked Bard the following questions:

Do you feel like having an autism spectrum that distinguishes between these different syndromes creates this Goldilocks Rhetoric?

Do you think that these labels, such as Asperger syndrome or PDD-NOS or CDD or Rett syndrome, are unproductive to uniting the autism community at large?

Do you think that the move towards the general term of ‘autism spectrum disorder’ is better for the autistic community, or do you think that the differences between these individual syndromes is important to acknowledge?

Reading Bard’s response made me think about these questions in an entirely different way. In fact, they made me think about language differently. I’ve always thought that it was interesting how language can place restrictions on society by labeling and categorizing people. But at the same time, this language can also be a reflection of society.

In To Persevere by Ralph Savarese, he describes how his son, who supposedly has “no sense of self or others”,  expressed his love through his Father’s Day card. First of all, can I just say how much I loved this moment in the poem?  This boy, who society has decided is “incapable of love”, expresses himself in a way that others did not believe was possible. And it just shows how restraining language can be. Pinning this child down with phrases like these closes the minds of people around him by forcing them to lower their expectations. Language stands as a barrier, hindering others from understanding him. Language can do the same with the Goldilock’s Rhetoric; by simplifying the complex nature of autism in individuals down to a stereotype, language can limit open minds.

On the other hand, Bard brought up a great point by saying that “Nothing is going to change even if we remove the diagnostic divisions.” And now that I think about it, I think I knew that even before I asked my questions. Just because language may seem to label and separate people doesn’t mean that this segregation wouldn’t happen without these different terms. Even if there was no official distinction between Asperger syndrome and Rett syndrome and so on, people within the autistic community would likely distinguish between them. And it makes sense that people who do not know much about autism tend to blindly stereotype autistic individuals and separate HFAs from LFAs based on obvious manifestations of autism such as verbal abilities. While the official terminology may help encourage this sort of stereotyping, it would likely occur without these labels as well and is not necessarily a main cause of the Goldilock’s Rhetoric.

I think language is largely a representation of Goldilock’s Rhetoric as well. The way people speak, the things they say, the words they choose, are all indicators of their understanding of autism. And language is a fundamental distinguisher between the “NT allies” and the “jerks.”

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