Us and Them
I feel sad saying this, but I’m starting to think along these lines. Neurotypicals to Atypicals. Curebies to anti-cure. However you want to phrase it. I didn’t start out thinking like this, but slowly, due to feelings of rejection, I really think there are some fundamental differences.
I wanted to touch on this last night, but decided the Welcome was enough. I started to write a post, but this morning, due to a little discussion on a listserv, I’ve decided to start over. The comments were about how parents with Shadow Autism were “disrupting” the innerworkings of many Autism groups.
First, we must analyze this Shadow Autism, which I had never heard.
Definition: Autism is a spectrum disorder, meaning a person can be a little autistic or very autistic, and individuals can have varying symptoms. The term broad autism phenotype describes an even wider range of individuals who exhibit problems with personality, language and social-behavioral characteristics at a level that is considered to be higher than average but lower than is diagnosable with autism. Individuals who meet the criteria of the broad autism phenotype are identified through a test called the “Social Responsiveness Scale.”
It is theorized that parents who are a part of the broad autism phenotype are more likely than other parents to have multiple children with autism. Some studies seem to support this theory.
So the Shadow Autism just means autism-like symptoms, but not enough to diagnose. I know this does not classify us who are on the spectrum. The issue I came to today is that the particular email in question was the “push aside the feelings” attitude of the neurotypical father. We have a hard enough time understanding them and trying to make our voices heard. Then to be told our opinions on how things are handled disrupt the organizations who are trying to help is disappointing to say the least.
We need to make our voices heard to gain acceptance, but more often than not, instead of being accepted, we are seen as confrontational. We need to keep trying to understand them, but we also need to keep pushing our own agenda too. What was worse was the response to this email that we are all working to the same goal.
Our goal is acceptance whereas theirs is one of conformity. And so here I am trying to find the way we can all work together without falling apart. Us and them together as one when there is such dissention. We have a long way, but I’m sure there is a way.