The answer is that we live in a world where autism negativity and fear mongering are rampant, and I blame the media. Squarely. The Internet overflows with positive, respectful autism examples and role models that in no way downplay the difficulties that can come with being Autistic, but acceptance and even pluck don't grab eyeballs the way that tragedy does. This needs to change. The stakes are too high; we need balance in media portrayals of the autism experience.
I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.
It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics.
Countering negative autism attitudes and the pervasive media influence that shapes them has been a driving force behind Thinking Person's Guide to Autism. Providing positive role modeling and information is one of the primary reasons our project exists. And, as successful as the website and Facebook communities are, this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week). I really, truly hope our book will make a difference.
Information is power. We need to use our own power -- our social media voices -- to get out better autism information, and influence the media towards balanced autism portrayals. I hope you'll help spread the word about TPGA, ASAN, and other adamant autism advocacy orgs. If you're on Twitter or Facebook, please take the time to make a public statement of Autism Pride or #AutismPride. Your message might make all the difference to a desperate autism-fearing parent like Stephanie Rochester.
Leo at age two, around the time of his provisional autism diagnosis, and 100% adorable.
Please also read Emily Willingham's post Autism is not the monster. Postpartum depression is, and it has some help.
What a beautiful child.
ReplyDeleteShan,
ReplyDeleteHe's adorable. Thank you for this post, and for being a positive voice for our community.
Liane
Definitely 100% adorable.
ReplyDeleteI think Emily's perspective is well worth reading; in particular I think it points out the tragedy in this case was post-partum depression. Emily says that the media is building an autism monster that became the focus for this woman's mental illness, and that the community needs to disrupt that bogeyman. But, she also points out that the focus of mental is sometimes arbitrary.
I think the real tragedy was that the woman did not receive treatment for her postpartum depression, especially tragic because postpartum depression seems temporary and treatable; the tragedy of her child's death and the destruction of her own life and her family's life might have been averted if someone had listened.
what a lovely point you make
ReplyDeleteI am just so very sick of this constant obsession with demonizing autism - because sometimes its just one step away from thinking badly of people with autism
Some of the best people I know have autism !
"It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics."
ReplyDeleteI just hate that idea that we need to "fix" our autistic children. My child is NOT broken. He too, is most adorable!
I blame Autism professional therapists who are more attached to their Autism cash flow than promoting attitudes of competence and independence when it might interfere with their business. I have yet to meet the OT who will refer a financially stressed family to their local Karate studio where some people with Autism could (as did my son) gain motor-planning skills in a natural setting in his own neighborhood we could afford rather than pay her $135 for trying (and failing) to help. Some people can also benefit from the vibe of a Sensi who has no fear and a knowing smile for a highly-active 7 year old--vs an elementary-school Vice Principal who is afraid of possible "behaviors" and makes a student afraid of himself.
ReplyDeleteThanks for letting me rant, all y'all.
ReplyDelete@Anonymous, your comment isn't on-topic at all, but I hear you on the separate issue of insufficient and insufficiently tailored services.
I agree. Must be my ASD kicking in. And my anger at going broke paying for services while the Autism business booms.
ReplyDeleteI was thinking about the element of fear that is spread by the media and also the fear of those who fear their Autism business may shrink and those who fear ASD behaviors without cause. That was my train of thought. Does it make sense to anybody else?
Thanks for the reminder about staying right on topic.
Thank you so much for kicking us into gear to show our #AutismPride.
ReplyDeleteI sometimes get so tied up in difficult moments that I forget to share the joy. Beyond a tweet I blogged on the subject.
we peoplre with autism ar looked upon lik we ar no ones wqell i try tu gt it outta me even tho werds are hard fr me ppl need tu wak up understand tht we are ppl we feel pain as u we hav a heart lik u du we preople wth autism face a life ov scorn rejection frm a werld tht sees us as a disease tu be eradicated wel the nt werld is so lo st slo flsaawed an wrong we dsseserve ebveryright tu liv as al du wqe wth autism ernt A curse society is the curse as wel as the disease an we autistiks ar the cure
ReplyDelete