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Community over Cacophony: Navigating the Online Autism Community

October 17, 2010

Dictionary definition: “Noun: A harsh, discordant mixture of sounds: ‘a cacophony of deafening alarm bells’; ‘a cacophony of architectural styles’.”

 The online autism community often feels like a cacophony to me, especially the more blogs I read. I’m sure that this isn’t restricted to our narrow area of the interwebz, that this exists in any particular area of interest with tens of thousands of voices all clamoring to be heard, to have their version of the truth held out as THE truth.

I’m not a veteran blogger, not really, especially not compared to those who’ve been doing this for several years. In many ways, I’m still a baby blogger; I won’t hit my two year blogging anniversary until March next year. I think I’ve been a noisy blogger, though, with lots to say, and I’m sure with my own fair amount of truth I wish to spread.

That truth was, after stumbling across autism/vaccine related posts at Huffington Post by Jim Carrey and Kim Stagliano, making sure there was a counter to the vaccine myths that seemed to be scaring the crap out of people. This blog was not my first blog (Detritus was), but this blog, which started as Countering Age of Autism, was meant to counter the woo, the lies, and the pervasive negativity out there about parenting autistic children. In other words, it was set up to counter everything that Age of Autism was. I think, even though I’ve change the name of the blog and the url, that it still does this, still counters what the individuals at places like Age of Autism set out there. I don’t often read AoA anymore; they seem mostly irrelevant, and Kathleen and I found a better way to counter them: the autism blogs directory, where we actively, along with many of the bloggers listed there, seek to build a supportive community that focuses on building up instead of tearing down others.

I know that the people over at AoA argue that they are community, but they’re not a community I want to belong to, although some of its most fervent supporters, and indeed, the managing editor, have their blogs listed on the directory and I count these individuals as part of my community, regardless of whether they would return the favor.

I do not wish to belong to the kind of community that Age of Autism has created, the kind that consistently tears down people, that spreads misinformation, that knowingly passes along inaccurate information, that calls people who differ with them on the vaccine theory shills, sheoples and pharma whores, all while calling for civility.

I do not wish to belong to a community that focuses on maladaptive coping skills, conspiracy theories, and paranoia. Any community that promotes the idea that the government and industries are working together to engage in eugenics through the use of vaccines is not a community I’m gonna be in the midst of. Ah, but that’s just me. And that means, as a consequence because some of these folks’ personal blogs are listed on the directory, that there are times when I read some individuals’ blogs that I inwardly cringe at what I read. The directory, though, isn’t about just providing a list of people we agree with. Nor is it about providing a directory of what we’ve personally decided are the best blogs or the most important blogs. That way isn’t about community building; it’s about arrogance and creating a clique. I left high school nearly a quarter century ago, and I’m not going back to those juvenile games. The directory is about listing those we find out there who write disability related blogs. We go beyond just autism and are adding blogs relating to parenting children with disabilities as well as to living with disability as we run across them and we do not decide on these additions based on our agreement with their philosophy.

Despite the wide range of positions on autism and disability found on our directory, for the most part, I do not find the blogs on the directory cacophonous. Even where negative, even where woo-based, they still are attempts to connect to others and build community and support. Maybe I can’t support the woo, the inaccurate information, but I can be supportive of the people and their need for acceptance.

Our directory, proud as I am of how it grows, is, at least compared to what Wikio  lists, a small directory. Over at Wikio, despite its awkward interfacing to find the blogs, over 25,000 different blogs relating to autism are listed. Our directory, which has about 400 listings, is tiny in comparison, and is a narrow slice of the online autism community. And yet, we are much more inclusive than other lists that keep their groupings to less than 50. And we will continue to grow, to add more voices, while hoping that the cacophony does not drown out the community.

There are tremendously divergent viewpoints regarding autism, ranging from folks who clamor for a cure to those who want to know why you’d cure them, from parents who see nothing but the negative (or at least primarily focus on the negative in their blogs) to those who instead provide a positive counterpoint to that negativity, from folks who believe in the conspiracies and who insist it is vaccines, chemtrails and all sorts of other zany ideas to those who look at their children, themselves, their families and recognize that autistic traits are passed along from generation to generation, with both the genetic compliment and the environmental playing a role.

There is, in short, a cacophony of voices out there and if you read enough of them, each with their own interpretations of autism, you will feel your head spin as you try to reconcile the divergent positions. They can’t all be right, and with so much “literature” out there on autism with no clear guidelines, often what you have is a mixed bag of junk science, bad information, outright woo, and flat-out lunacy comingling with replicated science, better information, evidence-based practices, and a rational posture. Again, it’s head-spinning and no wonder that folks don’t know where to turn.

It is a cacophony and it can wear you down, confuse you, and leave you ready to throw your hands in the air. Just as we must navigate through the incredible cluster-frak of information to try and figure out the best ways to help our children and ourselves, we, if we’re looking for a place to find support, must navigate and find our way to a supportive community. This is not an easy task as so many in the online autism community seem intent on beating the crap out of each other metaphorically. And yet, I hope that this is a tiny sliver, an insignificant portion of our community, that most people are out there looking to share the ups and downs of their lives and find support, care, concern and return it in kind.

I choose community over cacophony. Whether that, in the end, has a bigger impact that constantly pointing out the holes in the logic of the insignificant slice of folks promoting a rapidly imploding miasma of woo relating to autism, I have no real way to measure. I just know that the community building leaves me better off at the end of a day, provides me with greater satisfaction and a supportive connection with individuals in similar life situations. And to add a bit of humor to this convoluted, serious post, as one of my bestest-ever friends often reminds me, it’s all about our own needs.

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