The first thought that came to mind while reading Strauss’ Autism as a culture was – what is culture? The definition of culture is the arts and other manifestations of human intellectual achievement regarded collectively. I made an attempt to keep that definition in the back of my mind in order to apply it to the article as I read. However, while reading I realized there is no collective understanding of autism. Different observations, conclusions and models have arisen since the first times that autism was studied. Autism has been “located” in so many different parts of the individual, the brain, the psyche, genes etc. Everyone who studies autism generally comes to a different idea or conclusion, usually piggybacking off the last.
What I found most interesting about this article was the question that is posed in attempting to understand the differences between the medical and social models of Autism – is autism a medical condition or a social group? The fact that this is still even a question is proof of how little we truly understand Autism and other “disorders”. This only supports the idea that Strauss’ states later in the article about scientist describing what could only be inferred. (464) The issues with our understanding, as Strauss continues to explain is also, as he calls it, “the problem with narration”. These ideas reminded me a lot of Renee’s post on the shared blog about communication. The members of any minoritized group, not just those that fall under the autistic spectrum, “should be able to resist medicalized discourse by speaking for him or herself”. However, as Strauss explains, because people with autism communicate in a non-standard way, they lack the ability to narrate their own experiences. These “minoritized groups” also lack a sense of community. This lack of community means lack of communication and social relatedness. How can we form relationships and really understand anything about anything if, in many (not all) cases, we do not have any information directly from the source? This is the reason behind so many of our negative stigmas, as Renee stated, when it comes to Autism or any sort of “disorder”. It’s interesting how as a society we agree that communication is definitely the key to opening new doors and making new discoveries but its what we lack the most.
I also found Strauss’s discussion of narration and the difficulties those who are ND must encounter when attempting to voice their perspective, feelings, or biography. Many neurotypical people find it difficult to express emotions and personal thoughts, this becomes even more difficult for those who are autistic and other forms of ND because there is not standard of narration are expression that encompasses what they want or need to express.
I thought of my first post on Susannah Cahalan’s “Brain on Fire” when reading your response. One of the most daunting and debilitating affects of Cahalan’s diagnosis was her inability to express her own thoughts and feelings. The insight that she provides gives a small glimpse into what people who are ND may feel their entire lives. While Cahalan was able to be treated, they may never find a means to narrate their experience or adequately express their feelings.
I agree that difficulty in communication creates a barrier from the autistic community from forging a sense of cohesion, but I think that it is interesting that Straus points out that it is difficult – not impossible. The whole argument that Straus is making is that autism is a social construct rather than a medical diagnosis, and this is achieved by the various ways in autistic culture (high and low) find ways of mediating their experience, whether it be through writing, art, or music. I found it particularly helpful to understand Straus’ argument about autists as a socially constructed community rather than a medical disability by implementing his idea of “local coherence” which he defines loosely as “a propensity to perceive the world in parts rather than as a connected whole” (467). By generalizing the idea of local coherence to the entire autistic community, we can begin to accept it as a group of minority individuals coming together and forming a group just like we would accept race or gender or class as its own community; the autistic community is simply just another variation of a minority group that may not adhere to our standard definition of a community because the individual members are not a “connected whole” but when looked at in parts there are definite connections and traits that arise.
Cara,
As I read your comment it made me think of “My Stroke of Insight” and how terrifying it must be to have all these feelings and experiencing all these different things and never be able to completely express them. It must feel like screaming at the top of your lungs and no one being able to hear you!
Strauss’ ideas of the ND and the difficulties in communication immediately brought me to Higashida. Straus says that it is difficult but not impossible. Higashida is a great example of being able to communicate. After all, he wrote this entire novel we are reading. So although to some it may be difficult, it is not impossible. I think if the caretakers of anyone who is ND can try different approaches to help them communicate it may be easier to find out exactly what they are feeling and need from us. It may not be writing, but you can use many different techniques to help them communicate. So many times Higashida tells us how frustrating it is to be trapped in his body and not be able to communicate with anyone and how much of a struggle it is for him, if we were a little more patient and really tried to find a way in which communication can happen, I think everyone benefits from it. Having a child with autism will never be easy, however, to those parents who cannot communicate with their child, finding a way to make that happen can not only help the parents to help accommodate what their child needs, it can also have a positive impact on the children and relieve their inner stresses and maybe even bring some happiness.
Autism was not something I understood at all and is still something I do not understand completely. I have more of an idea of the mental condition through the readings and videos we have watched but that just seems to scratch the surface. I had responded to a post earlier stating that I had no idea that people with autism could communicate at all until I saw Schaber’s video and how “normal” she sounded. I saw children with autism who would not be able to maintain eye contact and would fidget all the time but they were so smart and artistic. My friends nephew has autism, though he could not sit there and converse like normal 5 years olds he could list every single subway line and the stops they make. He can change the entire format of your computer and leave you baffled as to how to change it back. Kids with autism from my experience are so intellectual in an impressive manner. The difference in how people with autism are makes it more complex to understand, I completely agree with the fact that autism does not have a clear cut definition and the fact that people who suffer from autism lack the capability to express themselves. It makes me wonder… imagine all that intellect and the ability to communicate what they know about this world, it could possibly change our entire understanding of this world.
I agree, that the idea of Culture alongside with Autism may have helped during the reading. It is a matter of understanding how the community works and what allows it to run as it does. I would think that those who study autism do use one another ideas in attempt to help understand their own makings/ thoughts on the research they conduct it is difficult to come to a conclusion on a topic that is forever changing literally through both the people and how society sees it as well.
It is difficult to have a sense of community since it is generally the lack of communication as you so clearly stated, but its also a matter of people that are not an essential part of that community maybe trying to make an effort in finding out more as a way to both include themselves in their community, but as a way to do the same and include their community into our own which by the way also lacks in communication, but maybe in these efforts there may be bridges that can be built for understanding.