Mutterings Of A Mindless Mommy

Last week I was sent a link to a YouTube video published by an individual named Christschool - the video is titled “Autism Everyday is a ‘Doctored Film‘”.  I don’t know much about the individual who produced the video but he seems to be fairly popular with the neurodiversity proponents.  The video is long, 15 minutes, but I figured it was worth 15 minutes of my time if it countered the awful video produced by Autism Speaks entitled “Autism Everyday“.  As I expected it was definitely worth that 15 minutes of time.  Bravo Christschool for an excellent video. 

A few days after I saw the video the topic came up on one of the autism message boards that I go to.  This is a general parenting site that has a subsection for autism and while I read daily I usually only post a few times a week.  I often-times find myself shaking my head at some of the discussions being had on this board.  It is not uncommon for posters to come on and ask advice from other posters about how to implement their new EDTA chelation protocol or to find out how many B12 shots to give.  The gluten-free/casein-free (GFCF) diet is also discussed regularly and one mother actually decided to stop an important medication for her child at the recommendation of another poster because the medication contained lactose.  No call in to the doctor to determine the effects of stopping the medicine, just an “ok, this is an infraction, we’ll stop it.”   I can only imagine the roller coaster lives that some of these children may lead. 

So this video comes up as a topic of conversation and a good 95% of the posters railed the original poster for daring post something that speaks against Autism Speaks.  Several mothers chimed in that they, too, have felt that death was the only option for their child at some point in their life.  Then the wars went on to parents of “high functioning” children vs. parents of “low functioning” children.  How dare a parent of a “high functioning” child post something like this - their child isn’t “low functioning”, they don’t know how hard life is.  I never bothered to post on this thread but like an train wreck in slow motion I couldn’t keep myself from watching. 

I have touched on the divide between the biomed crowd and the neurodiverse camp before.  I am still relatively new to all this but have found myself completely on the neurodiverse side of things.  No I don’t think there is a cure for autism.  No I don’t think Autism Speaks speaks for my family.  I am surprised that a lobbying organization the size of Autism Speaks has no autistic individuals on their board, no autistic individuals that speak at their meetings, basically no input at all from adult autistics.  I have read many reasons as to why this may be happening but the consensus seems to be that the leaders and members of Autism Speaks don’t want to envision a future where their autistic children grow up to be autistic adults.  If they don’t recognize that reality now then perhaps they won’t have to face it in the future.

Okay this post seems to have meandered a bit - just a braindump on my part that started with Christschool’s video.  I wanted to close this post with a link to post made today by Kevin on his Left Brain/Right Brain blog.  Kevin is a fantastic blogger and neurodiversity champion.  Enjoy:  On Media, neurodiversity, and science.