Your point of view makes all the difference

In a comment to my recent post 10 things children with autism wish you knew, Kevin pointed me to the essay Why I dislike “person first” language by Jim Sinclair as a counter to the first of the 10 things. (Thanks Kevin for the link, there are several other pages at the site worth reading as well.) Here is that item from my original post, as well as the 3 main points of the essay:

  • I am a child with autism. I am not “autistic.” My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

– – — — —– ——–

  • I am not a “person with autism.” I am an autistic person. Saying “person with autism” suggests that:
    • the autism can be separated from the person
    • even if autism is part of the person, it isn’t a very important part
    • autism is something bad–so bad that is isn’t even consistent with being a person

This distinction of language has helped me focus something that has been nagging me around the edges about the whole neurodiversity vs. BioMed discussion here and elsewhere. Specifically, that the two arguments come from two completely different perspectives.

Most arguments from the neurodiversity camp (at least most that I’ve come across) seem to come from the point of view of autistics or Aspies themselves. These people are typically adults (or older teenagers) and are speaking out for themselves, proud of who they are and aware of their differences from the norm. Those that are parents also take this approach in raising their autistic children.

On the other hand, the staunchest advocates of BioMed approaches and the search for a cure seem to be the parents of young, recently diagnosed children with autism. These parents, for the most part, are not themselves autistic and are speaking out for what they believe is in the best interest of their child with autism. Though they will do what they need to in order to help their children live with their autism in the world, they still hope for a way to allow their children to function typically.

And you know what? I think both groups are absolutely right in what they are doing and saying. From the frame of reference they are living in, their actions are perfectly appropriate. In fact, I don’t think this is much different than how things work in the NT spectrum.

When kids are young, it is the parent’s job to make sure the children are healthy, that they are able to function in school, etc. Though it is nice to consider the child’s wishes, it doesn’t really matter what the kid thinks or wants. The parents are in control and will ultimately play a large part in how the child ends up. [Insert “nature” vs. “nurture” discussion here.]

As the kid gets older, he/she becomes more and more independent. The parents still exert some influence and control, but at some point the coin flips: It no longer matters what the parents think or want. At that point, the child has become an adult and can then take on the world on his or her own terms.

Either way, it is not my place to tell anyone else how they should be raising their kids nor theirs to tell me. Of course, it is always good to know options and perspectives other than my own to help me make the best decisions.

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