Autism Awareness... A Month of Disputes

With Autism Awareness Month beginning, so are the annual debates on various online forums and within the media. For the next month, expect stories on the debates, the controversies, etc. involving autism.

On LiveJournal yesterday there were more than 50 posts within a few hours on the puzzle piece icons / logos used by various autism-related organizations. The vast majority of posts were from people with ASDs who view the puzzle quite negatively. One reason for the depth of distaste is the association of the puzzle with Autism Speaks.

If you really want to get people arguing, mention Autism Speaks, Generation Rescue, Autism Society of America, and Autism Self-Advocacy Network within any forum. The views of these organizations are often not grounded so much in logic as faith. Some people really, really dislike one or more of these groups. The groups themselves fight for funding and public attention, plus there is local-level animosity in some places.

I am a member of the Autism Society of Minnesota, which in turn is a regional chapter of the Autism Society of America. I've had supporters of other groups complain to me about ASA, but I have found ASA is generally less "single-purpose" than other organizations. I'm only loosely involved in ASA, mainly presenting at some events. My theory is that you should speak where people might hear.

But, I'm not passionate about ASA. By nature, I don't care for large groups -- even large charities. Any large organization starts to focus on maintaining its own funding and growth. Service becomes secondary to the group's existence.

It's a shame parents, providers, educators, and researchers waste energy yelling at each other and questioning each other's motives. I don't care for most autism-related organizations, mainly because I think they play on the fear and misunderstanding of science within society. But, I also know that the parents joining these groups are not evil. I don't question their motives -- they are searching for answers and explanations.

This is a long month. April will be spent with factions calling each other names and making accusations about being "bought off" by special interest. The best approach to "Autism Awareness Month" might be to ignoring it.

Comments

  1. I enjoy hearing from someone with ASD and hearing their opinions about ASA, Autism Speaks, etc.

    Like you I do not understand how people can fight so hard against each other.

    Thank you for sharing.

    ReplyDelete
  2. It's easier to be angry and blame people for things in our lives. Sure, it is really tough at times, but the anger I hear and read is so intense that it cannot be healthy.

    My attempts to participate in groups is best described as awkward.

    ReplyDelete

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