Alright, Autism Speaks: I have a bone to pick with you.
While I still agree that autism is a disorder, and Dmitry’s developmental delays have caused difficulty, I cannot continue to support you.
Because I simply cannot hate autism.
Autism is a Pervasive Developmental Disorder. In every thought Dmitry has; in every stimulus he senses; in every choice he makes; there autism is manifest.
I cannot hate autism, because I cannot hate my child.
He is not “lost”. He is right here, the same boy I have loved since he was born. He was never taken from me, because I choose not to give him up.
But you… do you even realize that you are suggesting that despising your child and considering abandoning him as a reasonable action? Instead of endeavoring to understand and explain the spectrum nature of autism, you build a straw man from only its worst symptoms and call it “typical.” Anyone who knows anything about autism should know that an autistic child is anything but “typical”.
Autism isn’t cancer, or malaria, or dysentery. We don’t “lose” our children. They are just different, delayed, sometimes very difficult. But they are not child-sized caskets.
It is time you learn the difference. No more.
I made this comment over at Autism and Oughtisms that better sums up my position about Autism Speaks.
I’m generally a forgiving and understanding guy. A guy who’s pretty level-headed. I’ve been cautiously supportive of Autism Speaks in the past, because after all, there are major difficulties parents endure when raising an autistic child. But I have been remiss in my duty to examine *everything* AS says before defending them. No longer.
You know what? My son is lovable. He’s affectionate. Dmitry Laughs a hundred times a day. He is gentle, non-violent and loves to hug and roughhouse. He’s simply not the child Autism Speaks would have you believe he is.
The problem is that if AS starts to LISTEN, they’d have to change their entire operational model. They’d have to change the narrative they’ve worked for YEARS to build. Only when the guilt money, the pity money starts to dry up will they begin to come about. Until then, why change what works?
For now though, it’ll be Divorce. Agony. Bankruptcy. Childhood AIDS. SUICIDE. Autism Speaks has not listened to those they purport to advocate, so what we must do… NOW… as autism parents and autistics ourselves… is go to the source of their funding. Your neighbors, friends on facebook… they MUST understand that it isn’t pity we want. Research is good, improved therapy funding is good, family aid is GREAT. But the LAST THING WE NEED is for our child, or our own person, to be demonized and turned into a nightmare.
When AS casts that shadow that autism is only evil all the time, it falls on all of us. It falls on my son. But he shines far too brightly for you to comprehend, Autism Speaks.
Edit: this is all blowing up in response to this release by Autism Speaks:
NEWS TODAY: Wednesday Morning, John Elder Robison Resigns from Autism Speaks
The discussions continue. Autism Speaks, will you listen?
http://smallbutkindamighty.com/2013/11/12/many-people-mad-autism-speaks-right-now/ – A pithy response to sum it all up.
http://yeahgoodtimes.blogspot.com/2013/11/autismspeaks-does-not-speak-for-this.html The great Jillsmo at Yeah Good Times responds.
http://reinventingmommy.blogspot.com.au/2013/11/this-is-not-our-autism.html -this post from someone who works closely with their local Autism Speaks.
http://autisticadvocacy.org/2013/11/asan-aac-statement-on-autism-speaks-dc-policy-summit/–Autism Self-Advocacy Network was pretty appalled
http://ravenswingpoetry.com/2013/11/13/listen-an-open-letter-to-autism-speaks/ – Raven’s Wing responds with Asperger Poetry. Please read.
(Let me know if you have a response and I will add you.)