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Monday, July 6, 2015

"In the Autism World, We Fight"

In The Politics of Autism, I explain that conflict pervades the issue.  At The Huffington Post, Michael John Carley makes a similar point:
Unlike the worlds of Cystic Fibrosis, or Down Syndrome; the autism world also does not have one, primarily-unifying non-profit that everyone rallies around, goes on fundraising walks for, or volunteers for in the consensus-filled spirit of shared goals. In the autism world, we have a gajillion such organizations, almost never representing the entirety of the spectrum, and founded partly in the rejection of existing orgs. And with all those non-profits, no centralized guiding entity exists, or can exist. Sadly unable to coalition, they then compete for limited funds and press screaming. Whether it's spectrum folk like myself going after one another to jockey for attention,1,2, stating that Autism Speaks is complicit in murders, or destroying chat group relationships over semantic issues; OR whether it's the pro-cure folks producing the infamous "I Am Autism" video, the declaration that all 3 million of us can't use the toilet (uh, last I checked...?), the b.s. statistic of an 80% divorce rate, or the anti-vaxxers' insinuation that people like myself are simply poisoned, chemical accidents...we get comedy worthy of Vonnegut.

The present leadership of major players in the world of autism politics--rather than trying to soothe or steer the emotions of its overwhelmed members towards healthier perspectives--often willingly, in that battle for recognition, pours figurative gasoline on the fires consuming their constituents (whereas in other fields, competitions are resolved by comparing the results of their programs). Instead of healing, big-picture perspective, they douse those who trust and need them with alarmist, often misinformative rhetoric.
In the autism world, we fight. We fight over words, vaccines, aversives, behavioral strategies, and what research is ethical or that which is not. Most of the consequences for winners and losers of these fights surround our attitudes towards what constitutes a happy life, and this is rather big stuff; while other battles--vaccines and aversives--can determine whether people live or die. There is cause for anger, especially when services are the opposite of satisfactory, yet the majority of funding goes towardsgenetic studies having no impact on families living today.