Author Archives: Roni

Media Portrayal

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For this post, I simply searched the word “autism” on youtube. It came up with many videos, some of which we’ve watched in class. This one caught my attention because it was a cartoon and not real people. It is called “How to Help a Child With Autism” and promotes the organization Talk about Curing Autism.

The view of autism in this video is difficult to classify. Overall, I think the organization supports accepting autistic children and trying to help them in any way possible. This includes 12 steps for parents of autistic children to tak, most of which are therapy options.

The organization classifies itself as “families with autism helping families with autism,” and I think that’s an accurate description. The video mentions many treatment options, but most of them are safe (e.g. ABA, casein and gluten free diet, PECS, occupational therapy, etc.) and relatively non-controversial, unlike chelation or other potentially harmful treatments.

The description of autism on the organization’s website says,

“TACA believes in early diagnosis, intensive therapies and medical intervention for children affected by autism. With early intervention, medical treatment unique to each person’s needs, and necessary support services for families many children can improve greatly and some can recover from their autistic symptoms. We believe the future is not defined for many children affected by autism. Hope and recovery is possible.”

This, along with the word “cure” in their name, are primary reasons why this organization may not be the most supportive/accepting view to take (although definitely better than some!). They do describe autism as a life-long disorder, and emphasize the wide variety of symptoms and traits of people with autism.

Overall, I think the video and organization are a good resource for parents of autistic children, although it may seem initially overwhelming. It would certainly have to be viewed in conjunction with other resources, but that’s essentially true of any organization about autism. With so many controversial subjects, I think TACA takes a fair stance.

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Fiction Review

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The genre of the books we’ve read in class have not, in my opinion, had much to do with the effectiveness of the book or the accuracy of the portrayal. I learned the most from Curious Incident, fictional, and Reasonable People, a memoir. Curious Incident was my first exposure to the possible thought process of an autistic person, although not explicitly, and it had a good balance of stereotypes that made it realistic, but not so many that it seemed unbelievable. Reasonable People was captivating and thought-provoking, though a little long and repetitive at times. The image of an autistic individual was completely different in this book, but it was also told from a different perspective and from actual events. Gorilla Nation, being a memoir, went off on tangents a few too many times for my liking and at times seemed too dramatic, although those have had more to do with my personal preferences than the book’s subject. The Speed of Dark was a confusing mixture of reality and futuristic fiction: a world that seems completely contemporary except for the cure for autism, which is never explicitly presented as unreal.

I think it is impossible to write a book just about autism (or a book just about anything, for that matter). Curious Incident never claims to be about autism at all. Gorilla Nation is a memoir of Prince-Hughes’s entire life, which involved so much more than just her struggles with autism. Reasonable People has strong additional focuses on foster care and the psychological effects of abuse. The Speed of Dark is possibly the most focused on autism, but it is a fictional account set in a futuristic society where the cure to autism has been discovered. For a person who had no familiarity with autism, none of these books would be enough to fully understand all of the complexities associated with the disability and surrounding culture. They all portray a very different image of what an autistic person is like. And, in some ways, that is a good thing: the diversity of autistic characters reflects the diversity of actual autists. However, in order to get this message, readers need to be willing to read a number of novels from different genres.

Songs of the Gorilla Nation

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I can’t decide what I think about Dawn Prince-Hughes’ Songs of the Gorilla Nation. On a purely literary level, I’m generally not impressed. The organization of the novel has been difficult to follow, and on several occasions I have had a hard time understanding the chronology. Often, there are events in her life that I would consider very significant and impacting, but she barely mentions them, and other times she will delve into great detail about things I would generally overlook. I’m sure that this is an example of our divergent personalities, but it also makes it more difficult to relate to her or understand her.

That brings me to a different thought. Is this novel supposed to be a way to understand her? Does Prince-Hughes want her readers to be able to relate to her? I am reminded of our discussion in class on Thursday, about autistic writers, specifically Emily Dickenson writing not for her readers but for herself. I am hesitant to attribute Prince-Hughes’ style to a claim made about Dickenson, but it is interesting to think about.

As I’m reading, I keep making comparisons between the thought processes of the main characters in Gorilla Nation and Curious Incident. Reading Curious Incident really gave me an insight into an autistic mind, and Gorilla Nation has been a reiteration of the message we’ve been learning all semester: no autistic person is the same as another. The character Dawn is different from Christopher in nearly every way. I think Gorilla Nation gives a much more personal, affective portrayal of life with autism, being a memoir based on the author’s life instead of a fictional account by a neuroptypical writer.

I find what Prince-Hughes writes about to be very engaging. Her descriptions of the gorillas are captivating and completely unlike a lot of the images I have of gorillas. Her entire life story is incredible and inspiring. The novel overall is very thoughtful and poignant, if at times difficult to follow. The ultimate message of finding and pursuing one’s passion remains prominent.

Autistics Speaking Day

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I would like to begin this blog post by saying that this is the first Autistic Speaking Day I have ever observed. It is the first time I’ve ever even heard of it.

My lack of familiarity with autism is a theme I have returned to in many of my blog posts this semester. This class is my first exposure to an entirely different world, filled with controversy and misunderstandings and hope and aspirations. These revelations about autism have dramatically changed my view of others and of myself. I realized this a couple weeks ago in an unexpected way.

I was at my boyfriend’s house, chatting with his family as he went through the mail they had stockpiled for him. He discarded several magazines, including the July issue of the IEEE Spectrum, a magazine about technology. Although not my usual kind of subject, the cover caught my attention. A dark, shadowy face stared out, accompanied by the phrase, “Did autism make him do it?” Now intrigued, I proceeded to read the article about a man, Gary McKinnon, who hacked thousands of US government computers and whose lawyers now argue that his behavior is a result of his mental disorder, Asperger’s Syndrome. I felt very well-informed as the author explained the characteristics of autism and mentioned experts like Simon Baron-Cohen.

My boyfriend’s parents noticed my preoccupation and asked why I was so interested in an article from an engineering magazine. I explained the story to them. When I said the word “autism,” they immediately began listing the various people they know, or indirectly know of, who have autism. This, of course, reminded me of Bard’s first commandment: “Don’t compare an autist with your autistic sibling/cousin/friend/co-worker etc.”  I discussed what I have learned so far about autism with them and was glad to be so knowledgeable on the subject.

Had I saw that article three months ago, I would not have given it a second glance.

Which, I believe, is why Austistics Speaking Day is so important. As important a topic as autism is, there is a disproportionately large number of people who are misinformed or completely uninformed about it. Today is to inform those people, to raise awareness, to make them ask questions and get answers. I needed a college class to become aware of the issues, but for many other people, a day like today could be just what they need to recognize the importance of the neurodiversity movement.

In Henry’s Words

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What follows is an introduction to and an insight into the mind of a boy named Henry.

There is a sign outside of Tim’s Hardware Store that says “Liquidation Sale.” Liquidation: n. the process of converting securities or commodities into cash. That is the only sign I do not recognize from the twenty-four times I’ve ridden the bus to school so far this school year. The other advertisements, slogans, and propaganda are all the same. Propaganda: n. information, ideas, or rumors deliberately spread widely to help or harm a person, group, movement, institution, nation, etc.

No one sits next to me in my seat. Sarah says this is because I make a lot of people feel uncomfortable. Uncomfortable: adj. in a state of discomfort; uneasy; conscious of stress or strain. Sarah is very smart, even through she is two years younger than me and still in the elementary school. When we were both in the elementary school, she would sit in the seat with me. I used to read the signs to Sarah when she was little and couldn’t read yet. Illiterate: adj. unable to read or write.

I remember when I couldn’t read. Back then, I would look out the bus window and see the signs, but the letters would just be shapes that didn’t mean anything. Incomprehensible: adj. impossible to understand or comprehend; unintelligible. But I like it better now that I know what all the symbols and words mean.

Words fascinate me. Every time I see a new word, I memorize its definition. Mother calls me a walking dictionary. Hyperbole: n. an extravagant statement or figure of speech not intended to be taken literally. Words make sense to me. Each word has a specific purpose and a definition that can be summoned each time it is used. Dependable: adj. capable of being depended on; worthy of trust; reliable.

People can’t be memorized the way words can. They aren’t dependable the same way. They’re like the shapes from when I was illiterate. Incomprehensible.

This assignment intimidated me far more than it probably should have. I have barely begun to interact with the autistic community, I know next to nothing – who am I to write a short story from an autist’s point of view? I went through several vastly different ideas of who I wanted my character to be, all of which I thought were sure to be terribly inaccurate. It was not until I started reading Haddon’s Curious Incident that I was really able to see how an autistic person’s thoughts could be conveyed through text. That is not to say that conveying autistic thoughts through writing is so much different than neurotypical thoughts; on the contrary, reading this book is showing me how similar thought processes can be.

The idea for this character occurred to me as I was thinking about my own childhood and how I would read all the signs through the school bus window. I have a particularly vivid memory of realizing that I could no longer look at signs and see only shapes, as my literacy effortlessly recognized every word.

I let my mind wander a bit, trying to form this idea into a person substantially different from myself. I named my character Henry, gave him a sister, Sarah, and provided him with a passion: definitions of words. I wanted to create a juxtaposition between the stability of definitions and the capriciousness of people, which I would have continued to explore in the hypothetical remainder of Henry’s story.

Blog Carnival: Parenting Autism

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Blog Carnival

Posts:

What do people say to you when you tell them your child has autism?

This post initially describes a mother’s frustration at the unwarranted sympathy she usually receives when she informs someone that her son has autism. She then narrates a story about their guide on a family rafting trip, whose response was “Really? Cool,” and her approval of that reaction.

Violence, Autism and Bad Parenting

In this post, the blogger first explains her firm stance that having autism is not an excuse for being violent. She then describes several instances of her autistic son being bullied by other autistic children, and their parents did nothing to change this behavior. She concludes that autistic children can have good parents or bad parents, and there is not a link between either pairing.

Frustration, autism, and educational bureaucrats

This post expresses the frustration of a mother who feels that her autistic child is not receiving proper treatment at his public school. She describes a couple scenarios that upset her child and indirectly claims that schools agitate autistic children deliberately, or at least do not put as much effort into understanding the children as they should.

The Difference Between Autism And Aspergers

This post is by a mother who is frustrated with the lack of familiarity with autism in the general public. She describes a couple misunderstandings she has heard in conversation, then details several of the struggles her son deals with daily that she wish people would try to understand.

My Blog for Peace; From Battle Parent to Peace Parent in the Autism World

In this post, written on the International Day of Peace, the blogger describes the Battle Parents of autistic children and the various bureaucratic and public struggles they face daily. She states her ideal image of peace as a world where these parents could focus their efforts on caring for their children instead of fighting for their basic rights.

Is Your Child Ready?!

This post illustrates a story of a mother with an autistic son who is a senior in high school, and how she is learning to give him more space as he grows up. It addresses a key issue for all parents: how much independence to give your child, and when. She also provides a link to a website dedicated to helping parents of autistic children.

Positively Autism

Unlike many of the others, this post does not explicitly say that it was written by a parent of an autistic child. It announces an upcoming presentation, “Positively Autism: Parents’ Optimistic Journeys and Success Stories,” then suggests some ways that parents can view autism from a different, more positive perspective.

5 Things Every Parent in the Autism Community Can Learn from a Military Mom

This post relates the conclusions of an interview with two military mothers of autistic children, Kristin Proffitt and Kristina Matthiesen. The moms share stories and suggestions for other parents, five for everyone and six for specifically military parents.

Mercury challenge misunderstandings: A guide especially for parents new to autism

This blogger writes to autism parents, specifically one whose children were recently diagnosed. He describes in detail the mercury poison hypothesis and the chelating process, then critiques them to inform parents why they need to know the facts before accepting any treatment methods.

some words to chew on

The majority of this post is a reblog from a mother who narrates an interaction she had with her friend’s autistic son (who is also the blogger’s son). The child, who has no knowledge of the disability movement or neurodiversity, insisted that his autism was part of his personality. This impacted her and his father profoundly and demonstrates the relevance of the movement.

Analysis:

The topics of these blog posts all concern parenting and autism, all of which fall under one of two themes: expressions of frustration or messages of encouragement. In the first category, posts are written by parents addressing various groups: teachers, bureaucracies, the general public, and even other parents with autistic children. In the other theme, posts aim to benefit the general parent community from personal experience. Under this category, I include a post about presentations on parenting autism, one by a mother learning to let her autistic son become more independent, one with general advice for parents, a critique of the chelating process to inform parents, and a post with a positive message to all people involved with the autistic community.

The variety of subjects and positions present in the virtual world reflects that in reality. Parenting can be a touchy subject in any case, but especially with autistic children. For obvious reasons, parents are very protective of their kids and will go to great lengths if they think they are being mistreated. The blogs that expressed the parents’ frustration frequently lacked an effort to look at the situation from a different perspective. A mother was extremely angered by how her child’s school wouldn’t accommodate an autistic child, but did not stop to think about the other twenty or so children that the teacher is responsible for. Another mother complained about how uninformed some people’s comments about autism are, but did not allow that these people are simply unaware because it doesn’t affect them. Obviously, bloggers are under no obligation to be diplomatic in their posts, but I find it ironic that they are complaining about other people not trying to understand, while they themselves put forth no effort to do the same. I do agree that the public should be better educated about this topic, but angry posts to a closed community will not change much. The posts that are legitimate to this audience are the advice from personal experience, research-backed suggestions, and positive stories.

Feel free to check out my visual map!

The Quality of Autistic Lives

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In his article “Neurodiversity, Quality Of Life, And Autistic Adults: Shifting Research And Professional Focuses Onto Real-Life Challenges,” Michael Robertson begins by describing how, since the first diagnosis, autism has been characterized as a deficit – being autistic means something is missing – instead of an example of the diversity in human neurology. He states that “Academic studies adopting the deficit model have sometimes even characterized relative strengths of autistic people as deficits.” Majority of the article focuses on Shalock’s eight core domains of quality of life (self-determination, social inclusion, material well-being, interpersonal relations, rights, and physical well-being), and discusses the presence of each in autistic lives. Robertson concludes that research and the appropriation of adequate resources are needed to improve autistic lives. He lists purrent organizations and what they are researching, and ends by stating that more funding is necessary to end the deficit model of autism.

This article focuses on adult autistic happiness and well-being, something not often seen in modern mass media. Frequently, autists are portrayed as children, with ads appealing to their neurotypical parents or the general public. I believe that the source of this trend is directly related to Robertson’s description of the deficit model of autism. If autistic adults are through of as deficient in integral ways, organizations with this view would not want to waste resources appealing to this audience. From their view, autists cannot talk, can hardly control motor functions, cannot live on their own – they are essentially children, and children do not get to say what is best for them; their parents do. This viewpoint is extremely narrowminded – not to mention an inaccurate representation of the mental capacities of many autistic individuals. In a world with increasing acceptance of diversity, autists of all ages and capabilities need to be accepted for who they are – incredible examples of the diversity of mankind.