My Son is Not Lost

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.

When an organization like Autism Speaks casts this damning shadow of such magnitude over all things Autism, that shadow falls on Dmitry as well, and everything he is.

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:
http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

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://theconnorchronicles.wordpress.com/2013/11/12/autism-speaks-does-not-speak-for-us-this-is-autism/

http://www.decipher-morgan.com/2013/11/autism-speaks-isnt-speaking-for-us.html

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://www.mostlytruestuff.com/2013/11/autism-speaks-speak-son.html

http://autismandoughtisms.wordpress.com/2013/11/13/crisis-despair-and-everything-else-wrong-with-autism-speaks-call-for-action/

http://paulacdurbinwestbyautisticblog.blogspot.ca/2013/11/autism-speaks-kidnaps-policy-summit.html

http://autisticadvocacy.org/2013/11/asan-aac-statement-on-autism-speaks-dc-policy-summit/Autism Self-Advocacy Network was pretty appalled

http://www.blog.mamasturnnow.com/2013/11/12/dear-ms-wright-autism-speaks-and-any-others-out-there-who-may-read-this/

http://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/

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.)

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14 thoughts on “My Son is Not Lost

  1. mewhoami says:

    That’s right! They are not lost. They are here and very much alive and well. They may be different than typical children, but that is also what makes them so special. They need love and acceptance. Most of all, they need to be treated as any other fellow human being would like to be. Not looked upon as if they have an infectious disease. Good for you for taking a stand.

    • It feels exploitative to me. They use unsolicited pity for MY son and monetize it for THEIR gain. I realize that that’s how a lot of charities work but they’ve gone so far in overstating the case that it can only be described as disingenuous. And AS doesn’t want to “get it” because they don’t want to depart from what “works” for them, and it would require changing their whole narrative.

      “Autism can cause severe developmental delays that can be hard for families to endure” seriously isn’t enough? You have to start slamming around divorce, bankruptcy, SUICIDE? (They edited that part out of the video already, about the poor mother talking about driving off a bridge because her daughter was autistic.)

      In my earlier naivete I was hesitantly supportive of Autism Speaks, but I just can’t be any longer. From their commercial: “I work faster than pediatric AIDS, cancer, and diabetes combined.” Ugh. I need to stop before my language gets salty.

      Thank you for the comment <3

  2. I can’t stand a lot of autism sites and positions reducing us to lists and symptoms. We’re awesome!

    • You said it man! Fearmongers, the lot of them. “And if you are happily married, I will make sure that your marriage fails.” That’s how Autism Speaks separates you from your money.

      Bullsh**

      Glad to see you didn’t end up in a coffin, as Autism Speaks would have their donors believe. Can’t wait to see them start exploiting Avonte and other missing autistic children soon enough.

      • My blog is my way writing about the autistic experience and celebrating it through creativity and humour – I don’t have to mention autism. I am not my awkwardness in social situations, I am not just difficult or frustrated because I want to be – I am not empathetic, I feel too much, but chose to acoid the agonies of not being able to make head or tails of those feelings – and we are all owners of our autisms… We receive, process and see the world with a slight tilt – nothing is ordinary. I hate those guys, I want to celebrate the fact that nothing about us is ordinary… We may not like bright lights and bushy tails, loud music and peace rallies – but we have a voice and it’s awesome because it’s so different. We are not an illness, or a disease or something that needs to trained to fit in, or taught how chit chat or tutored in how to be ordinary. We need to be accepted. Because we feel, we feel too much. Too much to be reduced to godamned list of things we can’t do – when the things we can, we do better than anyone else.

  3. jillsmo says:

    THE GREAT JILLSMO LEAVES A COMMENT

  4. Jesse W says:

    If you are looking for a collection of links related to Autism Speaks and the many controversies they’ve been involved in, this may be of help: https://en.wikipedia.org/wiki/Talk:Autism_Speaks/Controversy_links

  5. […] is a concept I’ve touched on before, namely the question “Where does Dmitry end and autism begin?” Who is Dmitry the 3 year […]

  6. Sheogorath says:

    According to one of my most reliable sources, Autism $peaks works faster to bankrupt you than pediatric AIDS, cancer, and diabetes combined. Just sayin’.

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