Autism, Culture, and Representation

Author Archive

Encountering Autism in the World of Biochemistry

An excess number of English classes= an overwhelming amount of reading and writing and thinking. But no excuses.

First of all, I just want to give a shout-out to Victoria Lungu for a great CC:Savvy workshop. Thanks to this workshop, I was reminded to apply a CC license to this blog! So proud to officially be CC:BY-SA now.

And on another note.

Today, for the first time ever, I learned about autism in the context of a science class: Biochemistry.

Although autism wasn’t directly related to what we were studying, my professor added a slide about a recent discovery of autism treatment. He discussed research that explained how the deficiency of an enzyme led to autism with epilepsy.

It was fascinating for me to see autism represented within a scientific context after studying it so thoroughly through the holistic lens of an English class. There was no discussion whatsoever about what autism is, but rather an expectation of basic familiarity with the neurological condition. There was no mention of the autism spectrum, nor the diverse ways that autism can present itself. The study suggested the mechanics of a treatment via compensation for the deficient enzyme.

I don’t have any negative opinions about this representation of autism, because although it did not give the whole picture, this wasn’t the context where it was necessary. In this class, it was merely a side note.

But it does make me wonder. With this being my only scientific exposure to autism, how many other students were formulating misconceptions based on this depiction? How many already had misconceptions?

If I had never taken English 416: Disability Studies- Autism, Culture, and Representation, I would never have been exposed to the world of neurodiversity and the autism culture. I would not have thought twice about this powerpoint slide. I would not be writing this blog.

The world of Creative Commons licensing, the world of autism. So many realms that college has exposed me to that I have to be grateful for.

The (not-so) Simplicity of Childhood Birthdays

I have to say, I’m genuinely embarrassed by the fact that it’s been months since my last blog post. It’s been a crazy summer, but in less than two weeks, I’ll forever be done with MCAT and can return to the real world.

Until then, while spending a study break remembering how much I miss perusing the New York Times, I was intrigued by this article.

Since I’ve always just been the host or the guest at birthday parties for kids, I had never really thought about just how complicated they can be. This article not only tackles the interweb of issues that they involve but also their impact and involvement (or lack) of special needs.

I wish I had time to delve into this more, but that’s it for now.

12 DAYS.

Stumbling upon a Story

I have to say, one of my favorite things about the internet is that although it is such an expansive realm, it can still incorporate very specific personal elements. A friend recently introduced me to Story Corps, a nonprofit organization with the mission of documenting and sharing the stories of individuals across the country. After recording interviews, animations are created to supplement many of the stories and videos are posted to YouTube.

And that’s how I was introduced to Sarah and Joshua Littman: through “Q&A”.

The first thing I noticed was how the video described how people with Asperger’s “can come across as eccentric and have obsessions- for Joshua, it’s animals.” This simple sentence was crucial in that it set the tone for what was to follow, and I think it did a great job of conveying two very important points about Asperger’s. First of all, the word “can” does a great job of emphasizing that the characteristics listed may be common for people with Asperger’s, but that not necessarily all people with Asperger’s share these traits. I also found that the phrase “for Joshua” was very powerful; it emphasized the individuality of his own Asperger characteristics.

I guess that what I really enjoyed about this video is that it is entirely based on the real interactions between a mother and her son. And there’s a lot to be learned from these personal stories and interactions.

It was also really interesting to have the opportunity to listen to Sarah and Joshua later on in their lives, at a time when Joshua was no longer a seventh grader but a new college student .

[http://storycorps.org/listen/stories/sarah-and-joshua-littman-2/]

Some things never end…

I can’t believe it’s been so long since my last blog post.

After my adventures of exploring Barnes and Nobles in pursuit of children’s literature for autistic kids, I requested a series of books online. I returned to the store excited to know that relevant books were waiting for me, but there were really only two of the children’s books that seemed to illustrate what I was looking for.

Elaine Larson's The Kaleidoscope Kid and I am Utterly Unique

These books in particular stood out to me, and these two books are essentially the reason that I haven’t been keeping up with my blog posts. Instead, I’ve been crafting an essay about these two texts, and I’m happy to say that the final draft is complete (for now)!

In preemptively thinking about this post, I felt the same way as I did when last semester ended. But now that I’m actually writing it, I realize that things are definitely different now. If anything, I have realized that if disability studies and autism in particular are things that interest me, then there is no reason why I can’t incorporate them into my life.

For example. I just realized that I never wrote about this, but my dance group at the University of Michigan, Salto Dance Company, guest performed at the EMU Autism Collaborative Center’s KIDPOWER Camp. This camp was designed specifically for siblings of kids with autism, and it was focused on celebrating these kids and giving them the attention that may be overshadowed by autistic siblings. After performing a few dances for the kids, we encouraged everyone to gather around and learn some dance steps themselves.

UM's Salto Dance Company guest performed and taught ballet to KIDPOWER participants at the EMU ACC.

You can always tell when kids are having a blast because their faces give it away. The kids were smiling, listening and watching eagerly and trying to mimic our movements. Even all the adults involved in the event were on their feet plié-ing with us. We had a great time working with such an enthusiastic group of people.

 

Anyways. Slight tangent, but not really. At the end of last semester, I was worried that even though my English class had changed my perspective on autism and disability, I would probably forget everything and become reabsorbed into the neurotypical world. This time, though, I’m not worried. I’m too involved in disability studies now to ever regress to how I was before.

It’s great to think about how my English classes about autism this year have really changed my perspectives for the better and for the long-term. So this isn’t a good-bye post either. I already have a list of autism/disability literature that I want to read over the summer, so I’m sure that I’ll be back here soon enough.

Searching for autism in children’s books

Now that I’ve had a chance to get back into the basics of autism, I’m moving towards learning about autism in children’s literature. I started my search for children’s books on the University of Michigan library catalog and the Ann Arbor District Library catalog, and was unsuccessful.

I journeyed to Barnes and Nobles in the hope of having more success. Instead, I stumbled upon this bookshelf:

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I have to say, I was impressed that this bookshelf existed. I didn’t really know what I was expecting to find, but I thought these books would be buried within a larger disability section.

When I took a closer look at the books, I was slightly bothered by one in particular.

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I guess being slightly bothered might be a bit of an understatement. I was shocked that this actually the title of a book. “I wish I were engulfed in flames: my insane life raising two boys with autism” not only seems ridiculously overdramatic, but it also paints a horrifying picture about the challenges of raising an autistic child. This image depicts a mother who dreams of suicide because of the struggles inherent in raising an autistic child. Someone who does not know much about autism might see this book and have a skewed perception about how horrifying it might be to raise a child with autism.

Another book on the shelf looked interesting to me, but there was one word that stood out to me.

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I thought that the word “threatened” seemed a bit extreme. To view autism as a threat is to imply that autism is bad and that it can cause damage to a person’s life. Autism is portrayed as an obstacle to be overcome, or something dangerous. It’s interesting how word choice can have subtle implications.

Although none of the children’s books that I was looking for were there, the store is having the books shipped over. So soon enough, I’ll be able to take a look at them and see what I can find!

With the Light Not as Enlightening as Expected

Although I was excited to be reading With the Light: Raising an Autistic Child by Keiko Tobe, I found that it did not quite meet my expectations. To me, it felt like the book illustrated many of the stereotypical characteristics of autism. Hikaru did not like to be touched, had a tendency to throw tantrums, liked trains, etc. I was disappointed that other than seeing these characteristics, I was not able to get to know Hikaru more as a character. There was a much greater focus on his mother, Azuma, and her struggles as a parent. I understand that this book targets parents and addresses the challenges that they face in raising an autistic child, but I would have liked the autistic child to be more developed and involved in the story as a person.

 

While I found that the mother has been one of the most likeable parents with an autistic child that I have encountered, I still found one fault that I had trouble looking past. She struggles at first to accept and understand what autism is, just as many parents do. It is casually mentioned in passing that she sometimes hits Hikaru to calm him down from his tantrums. Although this hints at the controversy over the abuse of autistic children, it is an idea that is not developed further and instead remains lingering beneath the surface of the entire story. Later on she says something about how she used to hit him and now understands him, but none of the other characters are ever aware of the situation and it is never addressed.

My initial reaction was that this was a bit weird but that the author was just trying to show that Azuma was not a perfect mother and not a perfect person. After thinking about it more though, it really bothers me that she chose to make this point in this way. I think that it is absolutely unacceptable for this issue of child abuse to have been written about so casually and that she was never called out for it.  I understand that this probably happens more than I would like it to in the real world, but I feel like in a story like this, it would have been more meaningful to me as a reader if I could have watched Azuma transform and explicitly realize that her actions were wrong in a way that was given more attention. I just felt like this was an issue that was too serious to just brush beneath the illustrations.

That being said, I also feel that there are no right ways to accurately portray autism because it is so different in each individual. When it is described by common characteristics, I feel like it is reinforcing the stereotypical understanding of autism. When it is not portrayed with some of these characteristics, then I don’t always feel like it was accurate. When a main character with autism is a main focus of the story, I often question whether the person’s autism is being used to create the personality and the obstacles the character faces. And when the autistic character is not the center of attention, I wonder why the character was not further developed and why the character’s personality was overlooked.

So I can see how this would be a useful to text for a parent to read. Azuma is relatively admirable, and the way she faces challenges can be inspiring to parents. But at the same time, I am hesitant about how people portray autism after only reading this book.

Autism 101: Understanding Autism at EMU’s Autism Collaborative Center

When already immersed in the world of autism, it is easy to forget how little others might know about what autism is. I attended an Autism 101 seminar at EMU’s Autism Collaborative Center to not only learn more about how the center and its philosophy, but to also see how they introduced autism to the outside world. This was both a volunteer orientation and an information session for community members, so I was curious to see how the center would cover the wide range of relevant information about autism.

The ACC had a well-rounded mission, describing the accessibility of care as well as the nature of the support provided through assessments and referrals. One thing that particularly stood out to me was their belief that “all persons with ASD can lead fulfilling lives as independently as possible within their communities.” I was impressed that this belief was emphasized, and reassured to hear them talk about coping with autism rather than curing it. Many of the mysteries and controversies of autism were touched upon, including the historical concept of “refrigerator moms” and the uncertainty about causes, the lack of a cure, etc.  Prominent figures in the world of autism such as Temple Grandin and Sue Ruebin also arose in conversation.

The EMU ACC stated that they use the first-person term “person with autism” as opposed to “autist” or “autistic person.” Based on their philosophy, I would have expected them to use the term “autistic person.” The ACC seemed like the kind of place that emphasizes how autism is a part of a person’s identity, so I assumed that the term “autistic person” would have been preferred. Their use of the phrase “person with autism” draws attention to the fact that a person is a person first and an autistic person second. I think that it’s very interesting how such a subtle difference in terminology have much deeper meanings.

I was surprised by how much of the information covered was not new to me, and it just reminded me of how much I learned last semester. At the same time, while the info session provided me with a great general background, I still did not feel as though I was entirely prepared to work with autistic children. I think it could have been helpful if they had spent more time covering interactions with austistic people. I am hoping to observe some therapy methods offered at the ACC and to continue to learn more about the center. It seems like a really great place doing truly wonderful things, and I can’t wait to work with them more in the future!

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