Yesterday, I got a letter from a charity in the mail — it was from Autism Speaks. It had me mystified me — why are they asking me for money, and most of all how did they think I’d be interested in their organization? I didn’t bother to open up, but just threw it in the trash.
So today I ran across this useful guide to autism organizations, and thought I’d share it, just in case they’re doing a large scale fundraising drive.
I asked Google if Autism Speaks is a good charity.
This is from Autism Advocacy which is a competing organization. They are not disinterested so keep that in mind. Autism Speaks does spend 27% of its budget on research, whatever that means.
It does say that one should be careful and spend a lot of time researching where your scarce and hard earned giving dollars go.
@Raven: at least some of that research budget is trying to find a way to “cure” autism.
If they were only pissing money away on other things it would make them a less bad organization.
(Coming in with very little context.) I get the impression that this is more of an advocacy group for parents of autistic people than actual autistic people.
Autism aside, the problem with parents is that so many of them fail to grasp that by bringing a new human being into the world, you cede control over the outcome. You came in with some idea of who you want your kid to be. They may turn out to have very different ideas, and you’re there for care and guidance, not control. (It doesn’t mean you cede all influence or responsibility of course.) Still, parents have a hard job, they get overwhelmed sometimes, and need help.
I was curious about the first checklist item. I see that in 2015, they did appoint two autistic board members. It sounds like they did it reluctantly. ASAN sounds like a much better organization (but again, I am doing cursory research here).
Who created that “useful guide” chart, and what motivates them?
Pierce R. Butler@5 Google image search mostly turns up reuse in Twitter. I can’t figure out where it originated.
It’s a questionable use of a comparison chart, since there is no reason to have check marks when the checks are all the same in each column. It can be summarized as “These two organizations have all these things. The other two have none of them.”
That doesn’t mean I disagree with it or even the use of such a “visualization.” I just think it should be acknowledged that the point here is persuasion rather than providing information in the most readable form.
“Autism Speaks” has a bad reputation among actual autistic people.
For one thing, they demonize autism. Parents and family are encouraged to see it as a tragedy, something horrible. I recall one subway ad campaign by them which characterized autism as some kind of monster that “kidnapped” children, which I found offensive, since I have a (grown) child diagnosed with autism and a sibling and a number of people in my parents’ generation who I strongly suspect are/were on the spectrum, and they are in no sense “kidnapped” by anything. They’re just people; maybe not the easiest children to raise, but they’re hardly unique in that respect.
Their research is mainly directed towards eradicating autism. Many autistic people see their autism as part of who they are. If you “cured” them of their autism, it would amount to erasing who they are and replacing them with a different person who is more acceptable to the neurotypical world.
Laura Kate Dale is my goto for autism news as a she actually wrote a book last year about growing up being autistic, gay, and trans. She does not like Autism Speaks as it is a parents group that does not listen to their children.
Pierce R. Butler
Here is who created it and self-advocacy is what motivates them.
For the curious: the link @ # 9 by A. Noyd goes to a tweet™, which goes to a blog front page, which, if you scroll down about 7 entries goes to a post, Good Autistic Advocacy Organizations vs. Bad Autism “Charities”, which assesses about 40 different “good” and “bad” autism-related organizations and has (at this writing) about 11 comments.
Addendum to my # 10 – I did not see the above chart at that blog post.
Seems like they used to do a lot of research on vaccine connections to autism.
So likely a waste of money.
I’m much the same. When some enterprise sends me unsolicited requests for donations, I know their business is making money from donations.
@ 10,11 Pierce R. Butler
https://www.facebook.com/IntheLoopAboutNeurodiversity/posts/1296528610735853
(Took, like, 5 minutes on Google dude.)
@^
Also, your link’s broken.
Also, that post has 133 comments although I’m not sure what that has to do with anything.
Also, I’ll stop teasing you now.
Autism Speaks has been in the news recently, and not in an entirely positive light. I suspect, PZ, that you were just a name on a mailing list that Autism Speaks bought to mass-panhandle in the hope of extracting donations from those who vaguely recall the name of the organisation but not the context in which they came to (minor) prominence.
Autism Speaks is evil. They don’t advocate for autistic people, but mostly for families “suffering” from having an autistic child.
Now, nobody says that having an autistic child isn’t challenging and that families aren’t getting enough support, but autistic children aren’t tragedies that took away your “real” child.
Maybe they should be renamed “Autism STFU”. They clearly do not speak for autistic people. If they speak for neurotypical parents of autistics, that’s not a bad thing in itself, but the name is misleading.
Silentbob @ # 16 – Thanks for the heads-up. Here’s the correct link.
That “In the Loop about Neurodiversity” article turns one year old this Saturday. The version I see still shows 11 comments – possibly an artifact of my Javascript blocker.