#WondrousWednesdays - Hop 'n' Snack

A whole lot of things coming together at once (the success of the Night of the Living Stim chat, Autism Speaks becoming more ridiculous, and a few of us still having a sense of humor remaining) meant we created a different sort of protest for those of us who can't make it to Washington.

We've named it Hop 'n' Snack - poking fun at some of what Autism Speaks has decided makes living with an Autistic person an absolute nightmare - we raid the fridge and jump on furniture. Totally. And we even take off our clothes. Those silly Autistics, always getting into trouble!

So if you'd like to join us in the horror of horrors, go to the official Hop 'n' Snack page, make a video and post away.

Even if Autism Speaks doesn't listen to us, this is way more fun than just shaking a middle finger at them. 

Disability Fairs and Support

Two of my co-workers have Autistic sons and both of their sons are in my son's class. (On another interesting note, Hubby's co-worker's son is also in our class. Hmmmm. Makes you wonder about the IT sector a little!)

Anyway, I am open about my Autism and SPD with the female co-worker. We'll call her Nikki. Last week, our fine city's annual disability fair was held at a location right next to our office, so went together over our lunch break.

While we have slightly different approaches to parenting our sons, for the most part we agree on a lot of things. So it was fun to go up to different exhibitors together and run miles away from others. 

Everything was good and we were picking up pamphlets happily until we came upon the Autism Speaks table. We look at each other and say, "oh gods, no! Get away!" and scamper over to another table. But I stop her and say, "do you think I should go talk to them? Just ask them why they don't have any Autistics on their board?"

"No, Kelly! Don't do it! Don't get yourself all worked up! We don't have a lot of time!"

"but...but..."

"No..." and then she adds, "you know, I don't notice your Autism much, but at times like these, that's when it comes out!" and we laughed about it. Yes, I am stubborn and opinionated. 

But she has the tact and calmness to keep me calm and convince me now is not the time. I figure I might go back after work without her.

So we continue along, meeting companies. Then we see hyperbaric oxygen chamber therapy. I had warned her about it since they were there last year. You know, they have this study, which was made by their clinic, which showed no real significant long term improvement, but they continue to make money off parents grasping at straws for a treatment. Run, run, run! Ooouf, some sort of magnetic ionic something or other machine? What? Who? Woo?

And then there was the dolphin swim, which costs like, 5 million dollars. I have no doubt swimming with dolphins could be fun. It's something I always wanted to do as a kid. I had a "dolphin encounter experience" as an adult while on vacation in the Bahamas and yes, it was cool. But I've also since learned more about not using wild animals for our benefit and I don't think it's fair to keep them in captivity. I also don't think people should feel like they need to spend thousands of dollars on it. But hey, it's not my money.

On the plus side, I found some very cool OT swings I could outfit my home with and I also found an OT for myself! It's also really nice to go to an event like this with someone and run from the same exhibitors. 

On the way out, I thought to talk to Autism Speaks again and Nikki talked me down again. I did not go back after work. I wasn't in the mood to argue.

Why I Don't Like Autism Speaks

Autism Speaks, but I don't think they listen

I'm going to put some opinions out there to the best of my ability, because I get angry every time I think about it all, so it's not easy. I'm also not going to link to any doom and gloom sources (why would I want to give them more traffic?) so if you really want to know more, you'll have to Google it yourself. (The links in my text all go to posts on MY site with MY opinions)

I'm concentrating on what I know of Autism Speaks Canada, since I'm Canadian, but most of it applies to Autism Speaks, which originates in the US.

My issues:

• I've talked about my issues with the puzzle piece logo a bit in this post. The puzzle piece logo that has become so famous was created by Autism Speaks. 

• No one on their board of directors is Autistic. Not one. Does that make sense to you?

• They create/sponsor ads equating Autism to a disease like AIDS or cancer, only worse.

• They sponsor movies like, Autism Every Day, where mothers complain about how hard their lives are, how their hearts are breaking every day and how they'd love to commit a murder-suicide by driving off a bridge with their Autistic child.

• They spend most of their money researching "cures" rather than supporting families. You can go ahead and see their financial reports for yourself on their websites. 

• They are fighting more for Awareness rather than Acceptance. There's a big difference between the two. 

I could go on, but I think that's a pretty good start. They do not get my support or money. They do not represent me, my family experience or my ideals.

Autism Speaks, but most certainly not for me.