Autism Speaks

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I will be hearing a speaker from Autism Speaks on Wednesday. What can I expect? What should I ask myself? What should I ask them?

Overwhelmed as usual!

Judging from their radio adverts, expect to hear how helpless people with Autism are, and how they need you to dig deep in your wallet (or purse) to give them lots and lots of money to help all these helpless people.

Ask them what they are doing to increase the small proportion of their money that actually goes towards helping people living with autism.

Ask them what they are doing to ensure their actions reflect the wishes of people with autism. Point to the lack of autistic people working for them, John Elder Robison resigning because them ignored him, and so forth.

Thanks, guys! Those are great suggestions!

According to their TV spots, all autistic children (in their world, there are no such things as autistic adults) are useless tragic burdens to their families and the world needs a cure right away to prevent any more of these freaks from existing.

Thanks, Willard. That was my impression, but you expressed it very eloquently.

Gee. And I guess we're not capable of having a well thought out, critical discussion of Autism Speaks either. (LOL!)

I suggest getting a nice, big cream pie and throw it in their... no that wouldn't solve anything, although it might end up on the news.

They will be in denial and come up with some stupid mumbo-jumbo if you openly disagree with them and it will be mostly parents of autistic children who will believe them and swallow their BS. They want everyone to think people with autism are severely brain-diseased and desperately need a cure or they will always be nothing but wastes of human flesh who need assistance with their chewing and swallowing and going to potty, and nothing, not even living proof, will convince them otherwise. They are idiots.

Ask them do they help autistic people and their families out more than just releasing research into possible causes and putting on charity days? By that I mean do they help them with educational needs and finding work for autistic teens and adults? What about helping adults with accommodation and getting started with living independently?
Autism Speaks are in a good position to actually raise awareness for the lack of services for autistic people in some areas.

To everyone in the thread: I have read quite a lot about Autism Speaks and do quite agree with a lot of you, but I think instead of telling them what they already know what we think about them it would be better to confront them with the issues I think they should be standing for, in front of an audience.

Sorry, I'm not at liberty to say.

I guess it is ok to say that the talk was given at work, because you don't know where I work. But it's no big deal, just that it's a legal agreement.

Anyway, I went to the talk and it was not as bad as I expected. My impression is that Autism Speaks is working very hard to understand the scientific reasons for autism. For people who have trouble taking care of themselves this might be a good thing. I think that those of us who can take care of ourselves well enough or even extremely well, we like who we are. I know I do. And we don't want to lose the advantages of being on the spectrum.

I asked them 2 questions. Here's how they answered:

1. How much of the money that you collect do you give to people with Aspergers? The speaKER directed me to their literature, which summarizes that. (Haven't gotten a chance to look at it. I'm always overwhelmed with too much stuff to do!)

2. Do you have any people working for your organization who have Aspergers? She said she didn't know how many, but that she believed there were several and they work in their science research department.

I also made a comment that the video the speaker showed did not show any successful people with Aspergers. (It did, however, mention adult placement and help becoming independent.) The speaker was very polite and careful to mention later that there are many people, probably in my own company (I've seen people stimming, for sure) that have done wonderful things and "brought magic into our lives." I thought that was pretty cool. (I think by then she was catching on that I am on the spectrum.....specially since I volunteered to play the part in a little demo of what it's like to live in a world where you hear rain, have a scratchy sweater, and someone keeps correcting the task you're doing.....wish I had a video!)

I think they are talking about degrees. Parents with neuro-typical kids want to strangle them sometimes, but they don't do it. Disturbing fantasies can happen a lot in situations you don't know what to do, but you find help and solutions. They know it's just a cheap escape. People who suffer more disadvantages and can't take care of themselves and have fewer resources have more challenges and need more scientific research. I'm lucky. I have a good job, a great boyfriend with Aspergers, and we understand each other. Some people have disadvantages that are greater and they and their families need more help. Let's find a way to cooperate across the spectrum.

I consider the second part of the second video to be much scarier than the first part of it could ever be. I mean it.
It is scary because too many voices and they promise too much attention, not really what I would want! Unless they want me to be tired 24/7.