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.

When Helping Doesn't Help

I read this great article that touches on what I call, "when helping doesn't help." It's about those moments (or complete events) where people genuinely have good intentions but fall short because of a lack of understanding.
It comes from a place of making assumptions, rather than just asking the right people questions. In this case, the article is talking about when Six Degrees created a "day of silence" because some people don't have a choice. It's supposed to give people insight into how some non-verbal people live with autism. But it's a lot like those 24 hour "famines" or "homelessness" experiments. Two hours or even 24 hours is not enough time to get to understand what a person feels like. You always know in the end that there is an end to whatever "trial" you are going through. Not only that, but these experiments often take place in a group setting, where support and community get you through the "tough time." Most people who are really suffering do so all alone.

How about getting rejected for a job you are capable of doing and really want, but you can't or don't speak traditionally? How about then living in poverty because, while you have skills, no one wants to hire you? How about being relentlessly teased and excluded for your whole childhood? A cute little experiment doesn't give you that insight.

It happens not only with disability and class issues, but also race. I can think of times where someone invited me to dinner and said, "I bought/made this for you because I thought you would like it," with the implication that because of my colour or culture, I would automatically like it. While it's a nice gesture, it's also unfortunately misguided. Assuming what I need/like/do based on my appearance means you haven't really bothered to get to know me. I remember being chastised about the fact I get sea sick even though my father comes from an island. How those things are related is beyond me!

Imagine if I brought a jar of mayonnaise to all dinner parties with white people because I heard they like it....

The solution for all this is JUST ASK. If you want to help someone, the best person to ask about what they need is the person you want to help. 

Unless you are planning a surprise party, simply asking, "how can I best help you? What do you really need?" and then trying to achieve that is the best anyone can ask for. Do not think it is not worthy if you find it small/easy/insignificant. It might be easy for you and very hard for someone else. In which case, get your ego out of the way as quickly as possible and do what you are able to do. You might be surprised how genuinely appreciated it is.

EDIT: I also just found this article with more great ways to help.