Monday, April 4, 2016

Autism POV

Saturday, April 2, 2016 was World Autism Awareness Day. The hashtag #LIUB was used online and many public buildings changed their illumination to "light it up blue" to recognize the event.



The TCDSB had a Autism Awareness evening at their board office on March 31, where many students with autism spoke and performed. (Interesting fact: #samthedancingbarista, aka Sam Forbes, is a TCDSB student and spoke to the crowd about his experiences with getting a job and his viral video.)

However, there was an interesting alternative position that I only saw through Twitter, and only knew about because of some of the people and organizations that I follow, particularly @autselfadvocacy: #RedInstead, where people are encouraged NOT to wear blue but instead wear red. Supporters of this initiative call it Autism Acceptance Month, not Autism Awareness Month.

Why the opposition? The driving force behind the #LIUB campaign is an organization called Autism Speaks.  This infographic outlines the significant problems some have with this charity.

(This tweet below leads you to a larger flyer image, which may be easier to read.)

The source for this infographic is missing - which is unfortunate, because citing the resource would legitimize it further. It's difficult to get "objective" information on this topic, especially when it's a very personal issue for many.

I'm trying to figure out how to have this potentially-sensitive exploratory conversation in a way that doesn't alienate but illuminates. How can I find out if the board I work for, or the board that my own children attend, prefers one charity over another? I have my ideas, based on observations. How can I encourage the consideration of alternate points of view? Are other groups like ASAN too "radical" for an educational institute to support as publicly? Is it possible to accept both the "narrative of 'autism parents'" (credit to @captn_audmerica for the turn of phrase) as well as the #ActuallyAutistic? Is it possible to like programs such as PAST but also express admiration for views such as the one expressed in this website: http://www.autismacceptancemonth.com/awareness-vs-acceptance-do-words-matter/? These are questions I'm still seeking answers for, in respectful ways. Wish me luck.

2 comments:

  1. The source for the infographic is A$'s financial report from 2014:

    https://www.autismspeaks.org/sites/default/files/docs/final_autism_speaks_2014_28229.pdf

    http://boycottautismspeaks.com

    Also, if ASAN was too radical to support pubLicly I doubt Obama would have appointed Ari Ne'eman to the National Council on Disability way back in 2009.

    Some great resources for newly dx, parents and ex-A$ supporters can be found at:

    http://autismwomensnetwork.org/

    &

    https://autloveaccept.wordpress.com/

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    1. Thank you so much for the links. With this sort of support (presidential level!), I don't understand why #RedInstead has such a smaller profile than #LIUB. If it wasn't for Twitter, I would never have heard about it. (Probably because ASAN prioritizes supporting families instead of marketing, true?) I will try to encourage support for these charities at the board level as opposed to A$ - will they listen?

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