Monday, January 3, 2011

Oy Vey! Enough already with the NPR and the autism and the fail!

If it weren't for my long-standing crush on Ira Glass (Men with glasses, sorry!) and the fact that I notice a positive correlation between the amount of novels written by modern authors I read with my NPR reader/listenership, I'd probably be fed up already with their reporting on autism and call it quits. A few days ago, I posted on their coverage of Asperger Syndrome in the DSM and the amount of frustrating untruths and generalizations found in the interview. Now, I find myself infuriated at them again today, with an article about autism and oxytocin, titled, "Scientists Test 'trust hormone' for Autism Fight".
The title alone is problematic. Who's fighting autism here? What's there to fight about autism? Are we at war with something or someone? Is there some sort of grand battle here? And if so, can I commission an army of orcs?
I am already familiar with stories on oxytocin being used as a way of improving the behaviour of autistic children. I'm curious to see how it affects people like me, who have issues with intimacy and touching, but not until there's some solid science behind it. Especially for use on children, who may suffer more than an adult from negative side effects of unregulated drug use. It may prove helpful in the future, not a silver bullet that will magically make us neurotypical and cuddly teddy bears.
The way that this article was worded, you would think we were facing a life-or-death situation here. The word "hope" is tossed around like parade candy. It throws in the obligatory reference to a parent's struggle to find a miracle. To NPR's credit though, they point out that the research is not thorough enough to start spraying autistic children full of the stuff, lest there be long term side effects they are not aware of. I was grateful for that, home remedies often cause much suffering for autistic children. Chelation, anyone? The effects were well-described. It may help us improve our facial recognition techniques, and could possibly enable us to be more sociable.
But then, I saw the part of the article that made my eyes bulge out of my skull: Their choice for an interview on the possibilities of oxytocin was the Chief Science Officer of Autism Speaks. No autistic people were interviewed to give their opinion on the use of it. Not even someone from the Autistic Self Advocacy Network, or someone who had tried oxytocin before, or someone with issues the drug could alleviate, not a single one.
Once again, autistic people have been erased from the conversations that affect us most. NPR has decided that our thoughts and feelings on this important issue are not important enough, all things considered, to be included. Instead, they rely on someone from an infamous anti-neurodiversity anti-autism organization which makes money off of characterizing people with autism as objects of pity and autism as a monstrous force of nigh unstoppable evil.
It is unacceptable in the 21st century, the age where we have more visibility now than ever, in the age of Temple Grandin and Donna Williams, that a highly respected news organization relies still on the opinions of outsiders, rather than the disabled individuals themselves. This is way outside the norm of the disability community, and it needs to change. It's almost enough to make me wish that I had, as I originally planned when I started college, gone into journalism. It appears that neurotypical journalists from major organizations don't have much of a clue on how to respectfully report on autism and life with autism.
A long-standing motto/pledge of the disability community has been, "Nothing about us without us", NPR. And this is about us. Not about parents being provided with "hope". We're the ones who will suffer the long term consequences, if any. Why not give us a voice? That gives us more hope than any untested drug will.


  1. Great post. I wrote about the Allen Frances story the other day too. A couple of us submitted comments to NPR to complain about their coverage, but we haven't heard any follow-up yet.

  2. Thank you, Sarah! I read and enjoyed your post and the recommendation for Grinker's explanation. You did a bang-up job at dissecting the nonsense within. What I'm surprised is that NPR failed to disclose that Frances stands to profit by stalling the release of DSM V, since that will mean an end to his royalties for DSM IV. Curious...
    I also sent in a letter of complaint to NPR, but I have yet to hear anything back from them either.