Wednesday, September 23, 2009

Tis NOT My Life!

Today I saw a video that told a story about autism. But it wasn’t my story, or my boys’ stories, or my family’s story. And it really pisses me off that people are going to watch this and possibly think (assume) that this is our story, our life.

I’ll let you watch it.

I couldn’t even get through the entire thing. I showed Hubby, who just stared at it gape-mouthed as we watched it in the kitchen so that the boys couldn’t hear. (Can you imagine them watching that? “Mommy, did I ruin your marriage?” “Mommy, do I make you cry every day?”)

Our life is not all roses, but it isn’t all gloom and doom either. One of the reasons we have not ‘failed’ is because we have made choices to balance us. Our life is meaningful. My boys’ lives are meaningful, and dare I say enjoyable! We certainly don't live the status quo, nor do we want to. We certainly aren't indistinguishable from other families, nor do we want to be. People's perceptions of our children negatively effect them and us much more than their disabilities do. And videos like this certainly don't make perceptions change for the better.

Our Autism Speaks walk is coming up soon. In the past I have had very conflicted feelings about this walk since I pretty much can’t stand the organization’s scare tactics. But I have walked to support my friends and their families more than anything else. I don’t know if can do it anymore. I can’t just write this off as “fundraising” anymore or ignore it while I support my friends. I can’t ask friends or family to donate to an organization that makes my children look like they have some deplorable, deathly communicable disease that is spreading through the air. Nor can I in good conscious make my children participate in the walk, enforcing a message that they had no part in creating.

I feel lost tonight, shaken, dejected, hollow, battered. I may cry. I may lose sleep. I may feel scared, overwhelmed, and helpless. But it’s not because of Autism. It’s because of Autism Speaks.


Dana said...

I am with you. My husband and I felt the same way. I have an advocacy site and I've been working on a PSA that was finished today--it is almost like I knew they were coming out with this, but I didn't. I hope this makes you feel better. Hug your children.


Liz Ditz said...

Dear Tis -- thanks for your comment. One of the reasons I do these "rounding up the responses" posts is that people who feel the same way, but may not know each other (or read each other's blogs) can make new connections. (The roundup post is at

My connection to autism isn't familia.. -- we are MOL neurotypical.

1.I have dear friends with children with autism -- some non-verbal, some "high functioning".
2. I work with kids in k-6 who are struggling in school. Some are on the spectrum.

I found the way this video demonized and de-humanized people with autism frightening and disgusting.

Niksmom said...

I wanted to pule when I saw the viedo yesterday affternoon. I did manage to watch the whole thing. I figured I'd better know what I'm up against, right? Sadly, S got it totally backward and put the positive message of strength and family unity, hope and determination at the end of the video. You know, after they scared the bejeebers out of anyone watching it! STUPID STUPID STUPID.

I have not been a supporter of AS since the Autism Every Day debacle. I can't reconcile their overt lack of respect for people with autism with their fundraising for research. Can't.

abfh said...

Ange, thank you so much for posting this. I've linked to you from my blog here.

Stimey said...

I know just how you feel. I actually gasped out loud when I watched this for the first time. So disappointing.

Club 166 said...

Yea, I didn't walk last year (though my wife took the kids).

No way I'm going this year, or ever again (unless it's to mount a protest)


Mrs. C said...

I know they wouldn't be doing this if they didn't get funds for this scare tactic.

Accidental Expert said...

How horrible. Autism isn't the enemy, its people like this who fear it and vilify it. Don't think I'll be walking this year.

Joanne said...

Oh Lord. Well, at least we have voo doo on our side. What a crappy, crappy look at a life.