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Thoughts on Language and Responsibility in Blogging about Autism

August 1, 2011

There have been some posts I’ve read recently that raise the issue of the right of authors to be true to their experiences and the responsibility an author has to a wider audience. I’ve been chewing on this, weighing it. A lot of what we do in the online autism blogging community is reactionary; we respond to other people’s words. Sometimes we skewer them for those words. I’ve done that here; this blog started as a response to the words that Age of Autism put out there (and would do things differently now). Words matter; we all know that. Words start wars. Words end them. Words began relationships and tear them apart. Words build people up and rip them apart.

Many of us stand up and write in response to the R-word campaign, that the language must change, but that without a change in the sentiment driving the language, nothing really changes.

So it is not just words then, obviously, that do this, but the sentiment behind them, the honesty with which the words are offered and the receptivity of the person hearing those words. Sincerity on the offerer’s part can be rendered moot by the skepticism of the receiver. Wiio’s laws regarding communication are always worth keeping in mind.

It would be remiss to not let readers know the pieces which have made me think about the responsibilities we have when we write, both to ourselves and our own experiences and to the community at large. Failure to consider these twin responsibilities in tandem leads to more conflict. We hear in this community a lot about empathy and how autistic individuals lack it, with many autistics and families stepping forward to say that’s not true in their experiences. The reality is that we are all occasionally empathy-impaired. We are all occasionally self-absorbed. It is not the complete measure of a person that we have an occasional lack of empathy and  occasional self-absorption (which go hand-in-hand), but if we do not know when to shake that off and make amends, well, perhaps that’s the bigger problem. What’s important is that these kinds of pieces, the range of experiences, offer us the opportunity for reflection.

Rachel Cohen-Rottenberg’s recent piece “On Language and the Spectrum of Experience” calls a mother blogger to task for not considering her autistic son’s perspective when she relates a late night experience. Always thoughtful, Rachel’s concern that the autistic person’s perspective be related, be considered, that bloggers be responsible for their language use so that stereotypes not be perpetuated is clear.

As writers, we are responsible for our words, and out here on the internet, those words live on, ready to impact and influence others and even bite us in the rear. We put those words out there, and we have to accept that when we do, we open ourselves to criticism and disagreement, and there’s nothing we can do about it. So some thoughtfulness about those words we write for the world to see before we hit publish is probably a good thing. We should be responsible with our language while still being able to write honestly. Or we should have thick enough skins to accept that once we put it out there, we lose control of the message.
Another writer admonishes his critics to quit reading if they don’t like his words. It’s a short piece, and readers familiar with Rob Gorski’s blog Lost and Tired will know that his blog is about the difficulties and burdens that autism is for his family. You could not get farther from Rachel’s blog than Rob’s.
I’ve waded into these things before, argued that we have a responsibility to be sensitive to how individuals on the spectrum are portrayed. I’ve argued that we must be careful about how we present our stories so that we minimize potential harm. I think it’s harmful to write things like the light went out of the child’s eyes, or that the child died. Dude, it’s autism, not death. The reality, though, is that the parents who write these things are hurting, are not coping well, and may be dealing with things we cannot even begin to imagine. How do we help them?  Perhaps that is something we should consider before reacting. I know that there are things I would do differently now, reactionary pieces that in hindsight, were too judgmental.
The other thing that I think is not said often enough is that our community has a tendency to lump every behavior under autism, so that uncontrollable rages get labeled autism. Not everything is autism. Sometimes it’s intermittent explosive disorder. Sometimes it’s psychosis. Sometimes it’s bipolar or schizophrenia or full-blown OCD. Or generalized anxiety disorder.
I don’t think that things are going to change in the community; even this post is a reactionary post. It’s what we do; it’s an extension of a conversation that is international in scope and diverse in ideology. We each bear responsibility for the words we share with the world.
These two posts, read together, reflected on together, represent two poles in our community, and offer the chance for a wider dialogue on how to honestly share our stories while being responsible, or for that matter, a real dialogue on whether we owe the wider community any consideration when telling our personal stories.
To dialogue, to reflection, to diversity, to community.
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