Autism, Culture, and Representation

Archive for September, 2011

Crafting the ‘Cure’ to Autism

Words are ever-changing; their definitions evolve over time. Although the word ‘cure’ was initially derived from the Latin word cura for care, it was integrated into the world of medicine where it took on a new meaning: treatment. A ‘cure’ was no longer just a method of care; it became a solution to fixing problems.

Because of the complexity of autism, there are many sought-out ‘cures’ desired by many different people. To many people, the answer is simple: find out the cause of autism and eliminate it. While this is a fairly common ‘cure’, there is increasing support for ‘curing’ society instead. Some believe that the problem is not necessarily the medical origination of autism but the social reaction to autism.

A ‘cure’ often implies the need for a change. In the autistic community, a ‘cure’ is a way of ridding a person of their autism and allowing them to be ‘normal’. But what many people forget is that not everyone wants to be ‘cured’. Not everyone wants to be ‘normal’. Although autism has its effects, it remains a part of one’s identity. While people without autism may have many views about this issue, I think that it is primarily important to consider the views of those who do have it. There should be more importance placed on the opinions of autistic people because they should have a say in what is more important to them: putting an end to autism or learning to cope with it.

What most intrigued me about the article on Curebie-ism was the father who feared that his actions would be perceived as a search for a cure. His determination to help his daughter cope with autism was coupled with his worry that she would mistake this care as a desire for cure. I feel that this situation embodies the essence of the discourse on ‘cure’. The test proposed to determine if one is a curbie is also applicative: “If you care whether your autistic child thinks you are a curebie—you’re not one.” If we make a conscious effort to avoid curebism, to not blindly seek a magical ‘cure’, to not ignore the prevalence of autism in today’s society, we will be one step closer to the ‘cure’ for understanding autism as a culture. As long as we recognize the importance of both sides of the spectrum, of finding a medical ‘cure’ but also coping with autism in our communities, we will be able to come together with improving the lives of autistic people as a common goal.

In my eyes, autism has started to remind me about the Pediatric Oncology patients that I spend time with in Child Life, a department that helps children to cope with and understand their illnesses, at Mott’s Children’s Hospital. Although these children are all suffering and fighting against cancer, there are lots of fun ways for them to spend their time at the hospital. One of the activities that we do with the children is called Beads of Hope, a program that allows children to string together beads that represent parts of their medical journey such as their first hospital visit or their favorite nurse. When they’re done, the children are happy to have been able to turn these serious medical milestones into a necklace that they can appreciate.

I believe that this is exactly what the world of autism needs right now. Something that would bridge together the gap between the biomedical and the socio-cultural realms. Something to integrate both and find a balance, a happy medium of contentment with the present but persistence about the future of autism. The ability to accept the immense importance of both autism as a disorder and as a culture. We have the beads; all we need is the string.

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Examining Autism through Terministic Screens

Let me introduce myself before jumping into my next topic. I’m Trisha, a sophomore at the University of Michigan. I am aspiring to be a Pediatrician, and I am majoring in English (declaring tomorrow!). I love to read and write, as well as dance ballet and lyrical. This semester, I want to use literature to learn about autism and its culture.

Broderick introduced an important part of this culture: ABA recovery program. The start of ABA created a ray of hope for families with autism by uncovering a solution that they had not known was possible: recovery. ABA opened people’s eyes to the possibility of normalcy, but it also blinded them from understanding the consequences. The language of ABA urged families to seek recovery, to do something about autism. With the potential of recovery, the art of autism was lost; it became merely something that must be fixed.

Maurice’s advocacy of ABA as the only scientific, and therefore only “legitimate,” means of recovery was a source of reassurance for many who then turned to place their faith in science (Broderick 2011). But in doing so, they turned their backs on other interventional methods without question. Scientific language convinced people of its veracity, and they failed to see that other solutions existed.

Lastly, Broderick described Autism Speaks as an organization that gave the once speechless disorder of autism the gift of words. With these words came power that enabled the successful spread of awareness, but this ideal power was buried within the large organization. Funds created to relieve families with autism instead to funded research in the hopes of stumbling upon a cure. Although the hope of  a cure for autism can inspire us with optimism, it distracts us from learning to cope with it.

Burke made me think differently about words by highlighting their illuminating but repressive nature.  Using the metaphor of terministic screens to examine disability allows us to be aware of how we perceive things, to consider how our knowledge of one thing may be paired with our ignorance of another. But terministic screens add a filter of complexity to disabilities that is not always necessary, which can only distract us from understanding the more simple situations. Like a pair of glasses, the usefulness of the terministic screens metaphor depends on the situation; when needed they can be of great help, but when superfluous, they are merely a distraction.

 

Embarking on a Journey to Understand Autism

This semester, I hope to learn more about autism as both a medical and social disability. I am very interested in studying how autism is depicted in literature and how autistic people use literature as a form of expression. I hope that I will leave this class with a thorough knowledge of what autism is: how it is defined, how it is diagnosed, and how it is treated. But more importantly, I want to be able to understand autism from the perspective of people who have it; I want to learn about their views on autism and how they view their disability as well as how they feel about their role in society. I am also curious about autism not just in the U.S. but in the world; I would like to learn a little bit more about how the diagnosis and culture differs in other countries. Autism strikes me as an incredibly unique and interesting disability because of how differently it is represented in each individual, and I want to learn more about how these individuals use literature.

This course has already opened my eyes to the complex nature of autism as both a disability and a culture. I had not realized how complicated and ambiguous the diagnosis of autism is, although the definition seems to be becoming more defined. I was unaware of how many controversies surround autism: what to call people with autism, whether to treat them or adapt to them, if we should search for cures or search for methods of coping. Each of these matters is surrounded by a variety of viewpoints, and exploring these controversies is an important part understanding autism culture.

Autism is a complex condition out of which an entire culture has risen. I am really excited to examine and explore this culture with this class as a literary lens.

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