29
Mar
14

Autism: Puzzles and Rainbows

I originally wrote this piece in 2010 and a revised excerpt appeared on The Thinking Person’s Guide To Autism’s website in June of that same year. However, with current discussions in the autism community, the time may have come for me to publish this, again. Here it is, in its entirety:

 

There are two metaphors used within the autism community to express polar opposite views of living with autism. These metaphors shape thoughts and beliefs about autism and influence the actions of individuals. The two metaphors are: “autism is a puzzle” and “autism is a rainbow.” The majority of those in the autism community fall within the middle of these two extreme views of autism.

These metaphors form a cyclical relationship in which the metaphors influence the thoughts, beliefs, and actions of those who ascribe to the metaphorical concept and the thoughts, beliefs and actions then influence the use of the metaphors. There are six areas where the influence of these metaphors can be seen: research, day-to-day life, future planning, treatment/accommodation, conversation topics, organizations and groups that individuals create and join.

Before one can appreciate the metaphor’s influence on the community, a definition of autism is necessary. Autism is a pervasive developmental disorder characterized by   “poor social interaction (this can include lack of eye contact, and social exchange, both verbal and non-verbal); language delay (expressive language is equally important as receptive language; repetitive phrases and inability to initiate dialog or support it); obsessive behavior (this can include inflexibility, repetitive physical movement and fixation on objects).” (Hausman Morris, para. 3).

Autism is a puzzle:

The metaphor “autism is a puzzle” represents the views of those within the autism community who desire a cure, sometimes referred to as “curbies.” The belief that autism is a puzzle shows that these individuals believe that autism is something that needs to be solved, placing the various pieces together to make a complete picture. These individuals often focus on children with autism and either ignore the fact that there are adults with autism or honestly believe that adults with autism do not exist.

The types of research conducted or supported by Curbies are those designed to find the “missing pieces” needed to solve the “autism puzzle.” For instance, research into causes of autism is very important to this community camp because if one knows what causes autism (which creates holes in the puzzle), one can find what is needed to fill in the holes. If one can find out whom or what “stole” the “pieces,” he or she can begin working on putting those pieces back into the puzzle making day-to-day life better.

Blogs, articles and other written pieces that focus on the day-to-day life of those living with autism in this camp tend to focus on the negative aspects of autism. The blogs focus on what a hardship autism is, usually for the parent or other caretakers, including all the things that are missing in life. For example, the mother who cannot just hop into a car and do shopping errands because her son is having sensory issues and may become overwhelmed and have a meltdown. The post is usually focused on the parent’s frustration and other negative emotions, with very little thought given to how the autistic individual felt about the experience. The parent also expresses doubt about continuing to live life in this manner.

There does not appear to be much from this side of the autism community for future planning. That could be explained with the metaphor’s influence. Once the puzzle is solved, there is no need for specialized planning for a child who has autism. Or perhaps the future does not exist and is considered another “missing piece.”

The treatment aspect of this side focuses on the eradication of symptoms. This group is more likely to consider such treatments as Chelation (a medical therapy used to treat high levels of metal toxicity with the risk of death (Sedlock, para. 35), oxygen hyperbaric chambers and other risky measures. The reason is the belief that those treatments will “cure” autism and solve the puzzle altogether.

The conversations that take place on social media websites (and in living rooms) focus on the frustrating life with autism. The conversations discuss what the missing pieces might be. It documents the avenues pursued and money spent to find the missing pieces that will complete their life and make them “whole” again.

An organization that fully embraces this metaphorical concept is Autism Speaks. it even uses a puzzle piece as its logo. The research it funds primarily focuses on cause and treatments that will erase autism and its symptoms. The members of Autism Speaks and the parents, who support the organization, subscribe to this metaphorical belief that autism is a puzzle to be solved. Although, there are parents out there who use the puzzle piece logo as only a means of identifying other families whose lives are affected by autism.

Autism is a rainbow:

The other side of this discussion expresses the view “autism is a rainbow.” The rainbow is an object of beauty, a thing to be seen and appreciated. There is nothing wrong with a rainbow. This metaphor is often expressed in the thoughts, beliefs and actions of those in this autism community group. The spectrum of colors in a rainbow also represents the many levels of functioning that those with autism have.

The types of research supported by this group usually focuses on treatments into technology that will assist those individuals with autism to function in such a way that enhances their life, not “fix” it. For example, the research by this camp would, metaphorically speaking, develop a new window cleaner, so a person can look more clearly at the rainbow through the window.  Literally speaking, the research into technology might create a new device for communication purposes for those who are non-verbal because of the autism.

The focus of day-to-day life is often on the little and big achievements by those who have autism. The focus is on the “good” side of autism. A rainbow is comprised of a spectrum of bright colors and people in this group often view the day-to-day activities as bright experiences. They do acknowledge hard times, some of the time, but the main message is about the progress made by adults and children on the autism spectrum and less about the dark side. Some of the extreme members of this group refuse to speak about or listen to anyone or anything that sheds a negative light in any way on autism. The persons are often militant in this and will disassociate themselves from “friends” in online community forums if a person should ever type a negative word about autism.

Parents and caretakers often discuss future-planning in this group. The options discussed include trust funds (in case person is unable to work), services needed to support, therapy and so forth so that the individual can function just as they are. Some in this group also include education and vocational skills training, as well. Because a rainbow is complete, there is nothing to add to it, but other things come together to highlight it or appreciate its innate beauty.

Since rainbows are to be admired as is, treatment philosophies focus on technology and devices that assist a person, minimize or eradicate only the negative aspects of autism. To represent this metaphorically, a treatment could be considered wind. If wind were to blow, the rain clouds move on, and a rainbow appears. This is not reflective that this group necessarily believes there are negative sides to the individual with autism or even autism itself. It is how others view autism that would be considered a “rain cloud.”  So the treatments would include awareness and self-advocacy so that individuals with autism can “educate” the world about how terrific having autism is.

Conversations on social media websites reflect this metaphor as well. Rather than focusing on what’s missing, the topics are about what’s there. The conversations are about how those with autism feel and experience life. The conversations are about acceptance, by both those with autism and from the parent’s experiences coming to a place of acceptance. This is expressed in the metaphor by the “brightness” or positivity, which the rainbow represents. Since a rainbow is a thing to be admired, the conversations by this group focus around the admirable aspects of life with autism.

Organizations exist for this group as well. ASAN (Autistic Self Advocacy Network) is the most well-known among them. However well the rainbow represents this side of the community, a rainbow is not often used as a logo or symbol of pride because another community uses the spectrum colors in a rainbow to represent their pride. That group is the Gay, Lesbian, Bisexual and Transgender community and could cause confusion. Despite that, the metaphor persists and continues to influence and manifest within the groups’ thoughts, beliefs and actions.There are some groups that use the spectrum’s colors within their logos, but not in the shape of a rainbow and the colors might be slightly different, such as darker or more pastel than those that are usually used in a rainbow representation.

The two metaphors for autism, “autism is a puzzle” and “autism is a rainbow,” influence the thoughts, beliefs, and actions within the autism community in vastly different groups. The differences that are represented in the six areas discussed show the considerable difference between the two metaphors and the impact each has for the different groups. It is a cyclical relationship because the metaphor reinforces the beliefs and thoughts which spur action which in turn develops a support for the metaphor to express those thoughts and beliefs.

 

 

Works Cited

Hausman Morris, Robin. “What is Autism, part one.” Examiner.com. Web. April 18, 2010.

Sedlock, Heather E. “How Do I Treat My Child’s Autism?” Examiner.com. December 14, 2009. Web. April 18, 2010.

Advertisements

2 Responses to “Autism: Puzzles and Rainbows”


  1. April 11, 2014 at 7:07 am

    Why can’t it be a “rainbow jigsaw puzzle?” Let me explain: the puzzle pieces in my thought process I just said are not ways to -fix- the problem and make it go away. Rather, as you learn more about Autism and a particular person, the pieces come together to form a better -understanding.- It is a rainbow because different puzzles are shaped different and fit together differently to make up that person. But I think that many often forget what we, the autistic/Asperger’s portion of the population actually -want.- And, (speaking for myself) what I want is for people to -understand- that I am odd, and I want to be able to work -with- them, not -against- them.

  2. April 11, 2014 at 5:54 pm

    I think that is part of the problem with “everyone just needs to get along”… we have people with their connotative meanings to words, symbols, etc. and they differ from other people. So, a puzzle piece wouldn’t offend you for the reasons you listed, and it would me because well, I’m too complex to be understood! LOL However, I do like your idea of the symbolism and if it was presented THAT way? I don’t think anyone would have found it offensive to begin with. But sadly, that’s not how it was presented. It was presented as a picture that was broken into pieces (a picture of their autistic child) and here we are, putting the pieces back together so they can find their “lost” child.. the normal one that autism stole away *eye roll*


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s


These are the types of things I talk about

Read it again?

ipnoid.com

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 1,273 other followers

Blog Stats

  • 9,345 hits

%d bloggers like this: