Acceptance, Autism and Independence

I have never seen Rain Man all the way through. The reason has nothing to do with the portrayal of autism spectrum disorders or savants or other labels attached to Dustin Hoffman’s character. When it came out, I had no interest in seeing it because the notion of one character redeeming himself while using another character just isn’t something that major Hollywood productions do well these days.

Blue, A Guest Post

A friend who is autistic and is a parent of a child on the spectrum asked if I would share her words about blue, Autism Awareness Day and how it makes her feel.

I have nothing of value to add about Autism Awareness Day, but she does. She asked to remain anonymous. I offer her words as she sent them to me, unedited.

blue

People have said that it doesn’t matter how you raise awareness, as long as you do. I disagree. Autistic people, their families and friends have spent a long time fighting stigma and spreading helpful information, true “awareness”, while other groups have spread fear, lies and hatred.

That group started a campaign for World Autism Awareness Day called “Light it up Blue.” They sold lightbulbs, put blue on their facebook profiles and generally just sent a lot oftraffic to their own site, to push their own agenda. And for two years, I have fought it on the internet. For two years I have been told that the problem is ME. *I* need to change, or accept, or lighten up. In other words, ME, the autism parent of a kid with autism, needs to sit back, shut up and be grateful for whatever attention I get. In other words, on World Autism Awareness Day, the autistic community should accept being treated like they are every other day of the year. This day isn’t about autism any more. It is about people who don’t understand pretending that they do.

Even the UN has bought into this new campaign. Hijacking an event like this on this scale is tantamount to terrorism. I can hear the backlash and hate at this statement already, but think about it. A day to celebrate autism and get informed is now owned and trademarked by the one group out there actively seeking a “cure”, promoting eugenics and not including any autistic people in their organization. They have completely taken over this day and made it their own, and big celebrities and international landmarks are buying in. To rephrase in case you still don’t get it: The Autistic community has been CUT OUT of World Autism Awareness Day. Search WAAD, or even worse “Light it up Blue” and guess where you go?

This year I will have twitter silence today. I really am “blue”, if blue is the colour of sadness, despair and disgust.  Enjoy your party. It isn’t my party. And as always, Autism Speaks does NOT speak for me or my family.

Our First Concert with Bobs and Lolo

This may be uncomfortable for some to read: I listen to some of my twins’ music even when they aren’t here.

When my oldest daughter was younger, from time to time I would play Bananaphone by Raffi. There were some really lovely songs on that cd.

These days I pop in Bobs and Lolo, specifically Action Packed. Rachel loves dancing to the music. It is such a happy and lovely cd for all of us. It melts my heart when Rachel sings “Something Special” to Daniel and I tear up a bit when I sing it to them.