A Question About Autism Speaks

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This is not intended to be one of my main threads, and also, I may ask a few more questions that come up, but the motivation for making this thread is this one question that has been nagging at me.

Exactly WHY does an autistic person need to be on the board of Autism Speaks?

I have hesitated to ask this because it seems that to so many the answer is self-evident, but the answer is not self-evident to me. At first I went along with general opinion, in my case, kind of like a baby eating pablum, but eventually the question started coming up and did again yesterday after I read yet another blog of someone protesting that organization. It has even occurred to me that the reason I do not understand this is that something is wrong with my brain, but I am reasonably intelligent. How can I be missing something so seemingly obvious that so many seems to see (except, I suppose, the people from Autism Speaks who decide whoever is and is not on their board of directors)?..

Note: I just now, after writing the above, realized that because the name of this organization is Autism Speaks, it does make some kind of sense that a person who is autistic would be on their board, except for me this is not rationale enough. Why would such a person need to be on their board of directors? Couldn't such a person or people be participating in this organization from other angles?

To start off, I suppose one possible implication of not having an autistic person on the board is that people who are autistic aren't as able to make decisions concerning the welfare of autistic people as are people who are not autistic. I suppose there could be some truth that some people in Autism Speaks do think this, but there also could be some truth to this general concept of autistic people (including myself) not being able to make as good decisions, though I am not sure, and also I am not sure how this plays into the potential enquiry into this question, and it did occur to me, just now, that perhaps,I, myself, should be on the board of Autism Speaks:-)....but I know deep in my heart that I am not qualified, plus no one has asked me to be on the board of this particular organization or any organization, for that matter, which is why I tend to start my own organizations, which, of course, I am the director of..

Maybe because an NT simply CAN NOT understand the struggles of someone with autism like someone with Autism and some level to communicate can understand and convey to others.

It'd be like having a whole organization devoted to helping amputees but not having a single amputee in their governing structure.

It makes me think of the group of high school kids who do something to help refugees in Rwanda because it's the popular thing to do. They know nothing about their plight other than what they've researched, and how many are involved because it's the "in" thing to do?

Ordinary people can want to help those less fortunate, but when they exclude those they want to help from being a member of their team, it smacks of elitism.

If an organization claims to represent a group of people, the least it could do is actively include at least one of those people to represent themselves. It'd be like having an organization dubbed "Women Speak!" and having only men on the board of directors. The women, as it would turn out, wouldn't be doing much speaking.

The fact that Autism Speaks carries with it an implication that autism is a defect, something wrong with you, is also reason enough to be suspicious of their entirely NT board of directors.

I guess it's for the best that they don't have an autistic on their board, because it helps to support the argument that they don't speak on our behalf. It's not like anything would change with the organization if they did have an autistic on their board. The autistic would just be bullied by the organization into helping to propagate their greed-driven, hate-filled agenda. The best thing Autism Speaks could do to help us would be to cease to exist. Their only true goal is to make money by exploiting autistics, as a means of convincing ignorant sheeple to donate to them.

Well I'm not really into this AS argument, not educated enough on it, but I think the reasoning is that members of the board make decisions about how the company functions. Workers or employees don't have the same kind of power or input. I think that's what you were asking.

What if the united negro association had nothing but white people for it board members?

Autism Speaks does not represent autistic people, it represent parents with autistic kids. Autism Speaks treats autistic people like soulless things that have a disease that needs to be cure. Where not even human in there eyes.

PS - Autistic people can speak for themselves and most defiantly can help decide what would help them as a group. Maybe you meant Autistic People in a Coma.

From what little i know about it, it should be called Mothers Against Autism. I think in their mind having someone with autism on the board would be like MADD having someone in a constant state of inebriation on the board. They don't want someone on the board who is infected with this evil thing they want annihilated.

I don't understand it. If someone had little enough human decency to be willing to work for Autism Speaks, why wouldn't they just try to find a job in the human-trafficking industry? It pays more money than a job that involves making autistic people their b***h.

Last edited by Mike1 on 05 Feb 2014, 5:27 pm, edited 1 time in total.

Indeed. And why would they ever think any differently, when they only see autism in children and don't acknowledge Autistic Adults as even existing, much less being able to speak intelligently about their condition?





Absolutely!

I was just answering little bee's question about why people here want an Autistic person on the board as opposed to an Autistic person just working there.

You guys really need to go look at their website again. They have blogs by adults with Autism who are discussing their struggles - maybe AS is changing. But they do seem to be involved in making lives better for adults with Autism - little bee posted a notice about a seminar they had for adults with autism looking for jobs (back in another thread). Maybe it's a slow process, but it is moving.

I'm really not trying to be confrontational, I don't know much about AS, but if they are making an effort, is all the hate necessary?

I still am not sure why JER quit the board (it couldn't have been because there were not Autistic people on the board). I'm going to read up on it more though.

Because, without any autistic people on their board, they don't get any input from our point of view. They're not able to properly help us, because they dont have any of us informing them about things they may be doing wrong(which is actually quite a lot).
This article...
http://www.dailykos.com/story/2007/05/1 ... ism-Speaks
...provides a good analogy of AS that shows how ridiculous it is that there aren't people on their board with ASD. I will quote it if you don't wish to read the entire article:

Well, if that's so, then whoop-de-doo, but I've seen plenty of their commercials on television in which they continually refer to the autistic as "tragedies" and "burdens to their families" and I'm not willing to just forgive and forget that easily, after the damage they've done in the public's mind to the very concept of autism acceptance.

I have also seen their spokespeople quoted in news articles promoting research into an in utero test for autism risk, which means they support the aborting of any fetus that shows signs of the possibility of an ASD, and that I cannot abide.

This is the reason that Autism Speaks will never speak for me.