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.
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!
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 !