Nguyen: With the Light

I remember when I first looked at the list of books that was required for this class and I thought, woah! We’re going to be reading a manga in this class and I was super stoked for it ever since. This manga is so beautifully done; from the pictures to how it’s written. It was definitely different to see how autism is viewed in a different culture. I decided to look into how autism is seen in Japan.There also seems to be a lot of misconceptions of what autism is in Japan. I came across a blog where Jaime Tatsubana talks about how Autistic people are treated in Japan. He states that treatment of those with Autism is poor in comparison to the U.S because of the lack of awareness in the country. Tobe shows this in the manga with how Sachiko and her husband has to explain to people what autism is when Hikaru starts crying or throws fits in class. Tatsubana said himself that he has never even heard of autism until he moved overseas to Canada. According to Tatsubana, if a Japanese citizen is treated with autism, they are given a booklet which gives the person free counselling and job search support. The booklet also enables autistic people to apply for “Living Protection” which allows those with disabilities to receive a monthly pension to cover living expenses until they can find a job.

In With the Light, it seems like Sachiko Azuma had a lot of support within the schools and daycares that she went to. I did a little research on the types of facilities and support groups that they offer in Japan. Here’s the link if you want to check it out: http://www.tokyowithkids.com/fyi/specialneeds.html

The website is divided into six sections: parent support groups, other links to different centers, evaluation/testing therapy, tutoring, distance programs, and others. Here’s one of the support sites that I looked at (Warning: it’s all in Japanese ): http://www.as-japan.jp/j/index.html

From what I can pick out from my years of learning the language, it’s a support group that’s mainly in the Tokai region in Japan. There are different options on there that shows different employment plans and childcare support. They even have different options for seminars to help adults to understand the different disorders and also seminars that help try to prevent frustration that leads to abusing your child. I guess this is surprising to me because I don’t really hear much on lots of support groups like this for autism. For school wise, it was the first time reading that there were separate schools for children with autism. Growing up, I only knew that children with disabilities were placed in the same school as everyone else.

I guess to me, out of all the books we read this semester, Sachiko had a lot of support and patience with the people that she had to work with. Yeah, she did go through difficult times with her husband and her mother-in-law but eventually they were willing to try to understand the disorder and try to do whatever they can to help Hikaru.

How are people on the Autism Spectrum treated in Japan? (July 13). Retrieved November 27, 2016, from https://www.quora.com/How-are-people-on-the-Autism-Spectrum-treated-in-Japan

Schweda, With the Light

Pre-Warning: I’ve been struggling with keeping up with names in this novel so I apologize in advance for my very generic labeling of characters.

With the Light: Raising an Autistic Child was probably the most heart-wrenching piece I’ve encountered this semester.  I think that we’ve read a lot of really interesting pieces this semester that painted autistic children as savant or incredibly gifted but skimmed over a lot of the hardships of actually raising a child with this disability.  I think this series of stories shows the raw hardships of how the stress of raising a child who is deemed different at an early age can completely change somebody’s life.  The hardest part about this novel for me was seeing how hard the mother worked and worked to build a relationship with her son, only to be struck down by her husband, her mother-in-law, her friends, and ultimately society.  The use of the word “depression” didn’t shock me when reading this novel.  I actually did some research to find out exactly how many mothers raising children with autism suffer from disease. According to the Illinois News Bureau:

“More than 30 percent of the mothers raising children with ASD reported moderate to severe depressive symptoms when their children were 9 months old. That rate compared to 21 percent of mothers raising children with other disabilities and slightly more than 16 percent of mothers with typically developing children.”

As an avid mental health awareness supporter, I found a lot of comfort when the mother in our novel began going to the classes designed to help mother’s raising children with autism. In fact, according to Autism Speaks, these classes are very real and show extremely positive rates of success in reducing stress, anxiety, and depression in mother’s raising children with ASD. The research mentioned in this article found that by reducing such factors, the mothers were able to strengthen their interactions with their children, which I think we also see in this novel.

Raising a child with autism is a selfless act and as a parent, I imagine it’s really difficult to see the payoff at times.  Like in the novel when all the mother wants is to hear her son refer to her as “mommy”.  She struggles and struggles to communicate and work with him and right when she all but forgets that that’s the goal she has, he looks at her and says her name.  The fact that the artist took two whole pages for the picture of joy the mother has says everything about that moment.  What can be seen as something small for a normal parent, has the possibility to mean the world to a parent raising a child with ASD.

In conclusion, I think that this book does a remarkable job with describing the hardships of being a parent in this situation.  The author leaves nothing out and attacks the hard and raw issues that I haven’t seen as much of from the other novels we’ve covered this semester (not to say that they aren’t there as well).  I think that telling this story as a graphic novel enhances the story because we physically and metaphorically see so many different things at play.  Between the physical reactions of some of the sub-characters and their actual remarks, this book encompasses so many different aspects of raising children with autism and I personally think that it’s incredible.

Citations:

https://news.illinois.edu/blog/view/6367/204598

https://www.autismspeaks.org/science/science-news/reducing-stress-depression-and-anxiety-mothers-kids-autism

Rampenthal Analysis: With the Light

Before reading Keiko Tobe’s With the Light, our professor said that this is probably the most accurate portrayal of autism of all the texts we read. I kept that in mind while reading it. What this manga makes very clear is that having an autistic child isn’t this magical adventure like in films and other works of fiction. With the Light seems like non-fiction to me, even though it technically isn’t. It felt more like an educational guide on autism than an entertaining novel out to make money with gimmicky autistic characters (like some of the others we have read). This book shows how difficult it is having an autistic child and it had me curious about the experiences of real life parents, so I did some digging.

Recently, the father of an autistic boy went viral on Twitter after asking for help for his autistic son. His non-verbal, 14-year-old son will only drink out of the sippy cup he has had since he was a toddler. The original cup eventually became too old and trashed to use, so the parents have been replacing it with exact copies. However, the cup isn’t made anymore, so the father asked Twitter if anyone had the exact cup somewhere in their cupboards that he could buy from them. He got a lot of support, but he also got a lot of hate from people who didn’t understand “why he didn’t force the kid to use another cup.” The father had to explain multiple times that they tried that and it resulted in two trips to the ER for dehydration. This one little thing, a cup, has brought on so much stress for the parents of this boy – medical bills (the ER is not cheap), worry over the boy’s health, time and effort finding the exact same cup, getting slammed with comments (kind ones and rude), and getting hounded by news outlets looking for a story after his twitter request went viral. The last I saw on his Twitter, he has gotten over 40 of these cups in the mail. I am sure that is a stress relief, but only concerning the cups. Ben’s parents still have plenty to worry about.

I continued digging and found plenty of parent blogs and this article on the hardships of raising an autistic child. Some of the postings include:

“It has hurt our marriage beyond belief. It has caused us to fight quite a bit, something that is very common among parents of special needs children. Initially, my husband blamed me for our son’s behavior — I was the reason he was so difficult.”

“My daughter is in mainstream pre-school and she sometimes acts aggressively towards other kids, hitting or biting them. The teachers and some other parents have accused me and my husband of not being strong enough disciplinarians with her; some parents have attempted to get my daughter kicked out… Even my own extended family has said we either don’t discipline her enough or are ‘too soft on her’ — as if enough time outs would solve my daughter’s problems.”

“Once he was diagnosed, I gave up going to law school to manage our son’s therapies. He has TSS [therapeutic support services workers] come into the home twice a week for two hours, and I take him to occupational therapy once a week, which is 30 minutes away. My other two children now have speech therapy as well (but no diagnosis of anything yet) and there was just no way I could find time for school and all of their therapies and appointments.”

Those are just a couple of stories from a few parents. But I imagine that every parent of an autistic child has similar stories. It’s not easy raising an autistic child.

Thaxton Analysis 10, Blog 7

This manga by Keiko Tobe is incredible and I’ve read lots of manga. I almost just want to shove this tome onto others when they don’t understand autism, because this depiction of it seems to be the least problematic that we’ve seen so far. It illustrates Sachiko, Masato, and Hikaru’s (and later Kanon) plight with coming to terms with disability, finding resources, and finding reprieve and help in others. Hikaru’s autism is intrinsically at the heart of the story, as much of the conflict in the manga itself rises from it. Whether it be coping with Hikaru’s outbursts, Sachiko’s attempts to find a haven for him, or other characters who oppress them, the family definitely has their hands full in raising a child with autism.

As I said, I really, really enjoyed reading this manga.  I think it stays true to “manga culture” and seeing a depiction of autism in that culture, for me, has not been an experience until now. Hikaru may not say much at all in this story, but his presence on the page is noteworthy. He takes a lot of dominance on the page when he’s in the scene or even being talked about. In the same vein, I feel like the story is less about Hikaru and more about Sachiko. If I had to say, I’d pin her as the protagonist (obviously, right?). Sachiko is definitely trying to beat the system that seems to be built against mothers like her with autistic children. All throughout the story, she goes to welfare facilities, daycares, has to interview for elementary schools in hopes they’ll accept her child—and often, she’s met with a lot of grief. The mothers with “normal” children don’t like how disruptive and “off” Hikaru is, and therefore puts Sachiko further away from them. Sachiko finds relief finally when she’s around others who understands her predicament, which, slowly but surely, includes her husband.

I felt like this manga not only played with the presentation of neurodivergence and autism, but also in traditional family values and the sort. Masato is the salaryman, Sachiko the stay at home mom. Eventually, the two compromise and Sachiko picks up a job and Masato climbs down the business ladder. I feel like these traditional values get flipped a bit when they both come to terms that their family isn’t “normal”. It seems to reflect the change and the adjustment that Sachiko and Masato have to do in order to help preserve their child. Just a tiny thing I noticed, but seems to be a big deal especially when dealing with this older Japanese culture.

The part that surprised me the most was near the end when Sachiko has her daughter. Sachiko can’t remember the first time that Kanon called her “mommy” when the word was a milestone for Hikaru. “I’m sorry I can’t be as happy as I was with Hikaru.” she ruminates. This was an interesting section that I feel showed a lot about Sachiko’s character. Here is a woman who is used to having to go the long way around, the higher road, the bumpier road, the hardest path yet taken—and yet when faced with a child who acts neurotypical, she almost can’t be thankful. Nothing with Kanon is hard (at least not yet, I feel). She doesn’t have to “try” to “earn her love”. It makes me wonder how the story would go if she had Kanon first—female, neurotypical—and then Hikaru later on in the manga. It would make for a very different story, no less, but what level of tenacity does Sachiko acquire from a neurodivergent child that she doesn’t seem to achieve with a neurotypical? (If I’m saying this right at all).

 

Thaxton Analysis 10, Blog 6

This manga by Keiko Tobe is incredible and I’ve read lots of manga. I almost just want to shove this tome onto others when they don’t understand autism, because this depiction of it seems to be the least problematic that we’ve seen so far. It illustrates Sachiko, Masato, and Hikaru’s (and later Kanon) plight with coming to terms with disability, finding resources, and finding reprieve and help in others. Hikaru’s autism is intrinsically at the heart of the story, as much of the conflict in the manga itself rises from it. Whether it be coping with Hikaru’s outbursts, Sachiko’s attempts to find a haven for him, or other characters who oppress them, the family definitely has their hands full in raising a child with autism.

As I said, I really, really enjoyed reading this manga.  I think it stays true to “manga culture” and seeing a depiction of autism in that culture, for me, has not been an experience until now. Hikaru may not say much at all in this story, but his presence on the page is noteworthy. He takes a lot of dominance on the page when he’s in the scene or even being talked about. In the same vein, I feel like the story is less about Hikaru and more about Sachiko. If I had to say, I’d pin her as the protagonist (obviously, right?). Sachiko is definitely trying to beat the system that seems to be built against mothers like her with autistic children. All throughout the story, she goes to welfare facilities, daycares, has to interview for elementary schools in hopes they’ll accept her child—and often, she’s met with a lot of grief. The mothers with “normal” children don’t like how disruptive and “off” Hikaru is, and therefore puts Sachiko further away from them. Sachiko finds relief finally when she’s around others who understands her predicament, which, slowly but surely, includes her husband.

I felt like this manga not only played with the presentation of neurodivergence and autism, but also in traditional family values and the sort. Masato is the salaryman, Sachiko the stay at home mom. Eventually, the two compromise and Sachiko picks up a job and Masato climbs down the business ladder. I feel like these traditional values get flipped a bit when they both come to terms that their family isn’t “normal”. It seems to reflect the change and the adjustment that Sachiko and Masato have to do in order to help preserve their child. Just a tiny thing I noticed, but seems to be a big deal especially when dealing with this older Japanese culture.

The part that surprised me the most was near the end when Sachiko has her daughter. Sachiko can’t remember the first time that Kanon called her “mommy” when the word was a milestone for Hikaru. “I’m sorry I can’t be as happy as I was with Hikaru.” she ruminates. This was an interesting section that I feel showed a lot about Sachiko’s character. Here is a woman who is used to having to go the long way around, the higher road, the bumpier road, the hardest path yet taken—and yet when faced with a child who acts neurotypical, she almost can’t be thankful. Nothing with Kanon is hard (at least not yet, I feel). She doesn’t have to “try” to “earn her love”. It makes me wonder how the story would go if she had Kanon first—female, neurotypical—and then Hikaru later on in the manga. It would make for a very different story, no less, but what level of tenacity does Sachiko acquire from a neurodivergent child that she doesn’t seem to achieve with a neurotypical? (If I’m saying this right at all).

 

Week 12 Review

Last night, we met for the majority of class in our literature circles.  Collectively, our groups read Delightfully Different by D.S. Walker, Eye Contact by Cammie McGovern, The Half-Life of Planets by Emily Franklin and Brendan Haplin, Gone by Michael Grant, Mockingbird by Kathryn Erskine, and Colin Fischer by Ashley Edward Miller and Zack Stenz.  I asked each group member to answer two questions: 1) what did your group discuss (and what was the best insight) and 2) what did you contribute to the discussion?

I read through your responses to the “best insight” portion of the first question and wanted to post some of them here:

On Colin Fischer: “We felt like we were reading the same book [as Curious Incident] with a slightly different plot and different character names.  I think the insight is that some new roles for those with ASD are needed.”  –Tanner

On Gone: “The best insight that I gained from this book is restored faith that an ASD character can be written without his condition simply being a gimmick.  Pete is a character that is well fleshed out and operates very realistically for a four-year-old autistic boy.” –Dan

On The Half-Life of Planets: ” This novel revealed something about people with ASD; they can still be sexual beings, like many other protagonists in other young adult novels.”–Haley

On Eye Contact: “The excessive amount of neurodivergent characters makes the story seem like a fan fiction written by a social justice warrior.  Where everyone is deviant form the norm and no one is typical.”–Diana

On Delightfully Different: “While this novel would be a great resource for those with friends and relatives on the autism spectrum, it is less appealing to the members of the general public.”
–Emi

On Mockingbird: “It is hard for us, and those with ASD, to take on other perspectives, but when effort is put forth to do so form both sides, communication brings great understanding.”
–Heather

After the break, we watched and discussed the documentary Manga World in anticipation of reading With the LIght by Keiko Tobe.  If you missed class, the film is available through the Films on Demands streaming database, which GVSU subscribes to.  See you soon.

 

Week 11 Review

Last night, we tackled the “Rainman” of autism-themed fiction: Mark Haddon’s 2004 novel The Curious Incident of the Dog in the Night-Time.  This wildly popular work has sold over 2 million copies, and it is largely credited with being the first novel to feature a first-person autistic narrator. As we alluded to last night, the book has also generated a spate of imitators, particularly in the young adult genre, but also evident in adult fiction.  Whatever the issues of the novel, it is undeniable that it presented autism to countless readers for the very first time.

To get into the novel, we took Simon Baron-Cohen’s online Eyes Test, which Baron-Cohen used as a measure of empathy.  We talked about the difficulty of the test, which asks participants to identify the emotion expressed by images of human eyes, and noted that while none of us obtained a perfect score, we are all quite accomplished at reading emotional expression.  Christopher, the autistic narrator, cannot read facial expressions very well, and this places some restraints on him as a narrator–we expect neurotypical narrators to observe the subtle changing expressions of their subjects.  Christopher is also incapable of lying or of detecting lies, and this led many of us to find him to be a more reliable narrator than, say, the Chief from Cuckoo’s Nest.

An interesting subtheme arose during our discussion of Christopher as narrator: the moral failures of the parents and nearly all of the adults in the novel.  We wondered if Christopher was the moral compass of the novel, or whether he could fulfill this role, given that even his altruistic actions (e.g. saving Toby) seem to be automated.  We wondered if the parents should  blamed for their adultery and divorce, or whether they were coping with the high pressure of raising an autistic child to the best of their abilities.

After the break, we talked about how literature circles should work, and then we got into our circles for approximately 45 minutes.  I asked each group to come up with one big idea that we needed to discuss.  My memory fails me a little, but here are the ones we addressed:

  • The ending, and more specifically, the gift of the puppy to Christopher.  Was this a kind gesture by the father or an attempt to buy Christopher’s affections?  Was it cloying or genuinely moving?  How can we tell the difference?
  • The overall impact of the book: even if the portrayal of autism may not be perfect, does the book perform a social good by raising awareness of autism?
  • More on Chrisopher and his narrative style: do the flatness of his observations (and the equal emphasis on the important and unimportant) accurately represent an autistic perspective?  Is there any way for a non-autistic author such as Haddon to represent an autistic mindset?  Does a narrator need to possess the capacity for self-relfection? Is third person the solution?
  • What would Christopher and Jack from “Telephone Man” have to say to each other?
  • More on Christopher: is he the real mystery to be solved, and if so, is this a problem?  Is he an issue (autism) in search of a story?  Is there enough emotional depth to Christopher, or do we have to redefine what we consider emotional depth?

Good questions, all.  We ended by looking at a YouTube video about the possible autism of Barron Trump, critiquing its negative portrayal of autism  I’m off to the NCTE conference, where I’ll be presenting on my recent autism research, but I’ll see you next week.  Remember to bring your literature circle book.  Until then.