Talk:Autism Speaks

True News

It is true news that the chief executive resigned because they wanted to waste more money researching vaccines. Someone changed my news. Can we change it again. I asked someone what happens now but I don't know yet. Peta Cook (talk) 02:07, 1 February 2009 (UTC)

Wiki edits should be based up WP:RS and WP:V; please provide a reliable source. SandyGeorgia (Talk) 02:08, 1 February 2009 (UTC)

Someone wrote a message in a box to me. Maybe Sandy. Thank you. I checked on the internet and straight away I found the news. It is true. http://actionforautism.co.uk/2009/01/16/singer-resigns-from-autism-speaks/ What happens now? Peta Cook (talk) 02:23, 1 February 2009 (UTC)

I dunno, it doesn't sound all that notable. Do we have a reliable source (as per WP:RS) reporting this? If it's just press releases or blogs, I wouldn't worry about adding it here. Eubulides (talk) 05:55, 1 February 2009 (UTC)

It's a rather significant event. Here's a link to a reliable source, and a commentary about it:

• Luscombe R. Charity chief quits over autism row. British Guardian, Jan 25, 2009

• Commentary from another source: Autism scaremongers blasted. Alison Singer, senior vice president of communications and strategy of Autism Speaks, has resigned because of the group's position that vaccination could be a cause of autism. Singer belongs to the Interagency Autism Coordinating Committee (IACC), the U.S. government agency for formulating strategy for tackling autism. Earlier this month, the IACC voted against committing money for two more autism/vaccine studies. By voting the the majority, Singer clashed with Autism Speaks' policy and decided to resign. In a recent interview, she noted that many scientific studies have disproved the link first suggested in 1998 and that Autism Speaks should let go of that idea. She also criticized actress Jenny McCarthy, who claims that her six-year-old son has "recovered" from autism that she attributes to vaccination. "We need to listen to experts and not to actresses," Singer said. "There's too much attention paid to people like Jenny McCarthy, who is not a doctor. When you listen to her, she doesn't speak in facts." Founded in 2005, Autism Speaks is the world's largest charitable organization that targets autism. Its reported gross income for 2007 was $44 million.

-- Fyslee (talk) 19:11, 1 February 2009 (UTC)

Thanks, that's a reliable source, and I added some text along those lines. Eubulides (talk) 20:28, 1 February 2009 (UTC)

Looks good now. SandyGeorgia (Talk) 20:34, 1 February 2009 (UTC)

Criticisms?

Why isn't there a criticism section? It was the incident about the autistic blogger with the screen name Abscout that I was hoping to read about. It is included, but that is almost the only criticism. I hear far more criticisms in the community, so I think a major part of this article is missing.--74.124.187.76 (talk) 16:40, 15 March 2009 (UTC)

Take a look at our guidelines on appropriate sources for this encyclopedia. If criticism of Autism Speaks is found in such independent, reliable sources, then it can and probably should be included here. If not, then not. MastCell ^Talk 18:05, 15 March 2009 (UTC)

And why does it seem that this article is biased towards Autism speaks and against the people it abuses? How much is Wikipedia being payed to support Autism Speaks or to side against the people they bully? Every time someone sides with the autistics in here and against people who exploit them like Autism Speaks, they are attacked, abused, and bullied. Why is that?--74.124.187.76 (talk) 20:39, 16 September 2009 (UTC)

The previous comment is based on incorrect assumptions and innuendo. Please stick to specific comments that will improve the article, such as comments that propose specific wording changes that include reliable sources. MastCell's advice is good advice. Eubulides (talk) 20:44, 16 September 2009 (UTC)

There is credible information from none other than the Autism Speaks site itself that they spend less on Family Services grants than they do on office expenses. May this be added to the article if the URL is quoted? BrandNewUsername (talk) 23:50, 6 December 2009 (UTC)

There's also information from the same source relating to the amazingly high salaries paid to executives of this "non-profit" organisation which I think should be added too. BrandNewUsername (talk) 00:07, 7 December 2009 (UTC)

No, probably not. MastCell's comment above directing people to this page is still appropriate. The short version is that criticism, and what you propose is criticism, should be sourced to independent reliable sources. Books, journals, newspapers, that kind of thing. Trawling through primary source documents like filings and drawing conclusions, or even just selectively quoting from them, is not acceptable here. Let the journalists or academics do the work, then quote them. Angus McLellan (Talk) 00:52, 7 December 2009 (UTC)

OK, I have done some digging. I want to write about controversies surrounding the group's beliefs on autism, and what the community thinks of them. I have articles from reliable sources such as Time and New Scientist. Now can I write? —Preceding unsigned comment added by BrandNewUsername (talk • contribs) 07:40, 7 December 2009 (UTC)

The New Scientist is already cited twice. I didn't know about the TIME article but just now added it. Thanks for mentioning it. Further suggestions and contributions are welcome. Eubulides (talk) 08:03, 7 December 2009 (UTC)

Alex quote

A recent edit by an IP address, which I just now reverted, appended the following text to the lead:

'However, the autistic community does not approve of Autism Speaks. According to Wrong Planet: "Autism Speaks, which claims to speak for autism, has no autistic employees or board members with autism and is viewed as a bully by many autistic individuals who feel that the organization engages in tactics that marginalize their voices and contribute to an environment that hurts the lives of those with Autism. Their most recent move certainly supports such an argument."'

There are several things wrong with this addition. First, the quote isn't sourced. Second, the source of the quote (I looked it up) is a blogger; we need reliable sources for text in Wikipedia, and as Autism Speaks #Portrayal of autism's coverage of this topic is already backed by a reliable source (Biever in New Scientist) we shouldn't be citing unreliable sources here. Third, the lead is supposed to summarize the body, not have extra advocacy; any coverage of criticism of Autism Speaks should be in the body and should be only briefly summarized in the lead (just like everything else in the article). Eubulides (talk) 15:26, 28 March 2009 (UTC)

Even a patch of graffiti is a reliable source, if you're talking about the graffiti itself. That paragraph claimed that the autistic community did not approve of Autism Speaks, and it used a primary source--namely, a piece of criticism--to back up this claim. That's not to say, though, that the paragraph's claim was not too strong; "the autistic community" is not a single entity capable of having an opinion. Take a look at the following:

Wrong Planet, an online community for individuals with autism and Asperger syndrome, does not approve of Autism Speaks. It says, "Autism Speaks, which claims to speak for autism, has no autistic employees or board members with autism and is viewed as a bully by many autistic individuals who feel that the organization engages in tactics that marginalize their voices and contribute to an environment that hurts the lives of those with Autism. Their most recent move certainly supports such an argument." [1]

Perhaps, though, it would be better to write about what this blog post is referring to, rather than the blog post itself. --98.209.136.197 (talk) 03:51, 3 April 2010 (UTC)

Clarification needed

The sentence: Autism Speaks's advocacy has been based on the view of autism as a disease, a view shared by many but not all autism scientists. is solely based on the book review source linked in this paragraph. This is in my view not really a valid source. I would doubt that there are medical scientists that would not view autism as a disease. Prof. Stuart Murray, whose book is being reviewed in the linked source is a Professor of Contemporary Literatures and Film. This paragraph needs clarification on who in the scientific community does not view autism as a disease.--Meisterkoch (talk) 14:22, 10 December 2009 (UTC)

I don't think we need "clarification on who in the scientific community does not view autism as a disease". It might be nice to have such a list of prominent names and their cited opinions, but that's a bunch of work.

What we need is an NPOV statement that there are many viewpoints out there, and that AS is at one end with people with ASDs at the other, also that there's a large middle ground. While we could also list advocates and locate them within that, our encylopedic and neutral goal can be met by merely toning down our statement to say that "there are differences of opinion".

There's also the point that I wouldn't distinguish AS alone as claiming "autism is a disease" or "autism is a medical condition". That's (particularly the 2nd form) a very widely held view and not what makes AS' position so controversial. They go beyond this to claim that it is a condition, it can be cured, and (most controversially) that it should be cured. It's that exclusion of accceptance for autism as an "acceptable personality difference" that polarised many people with autistic conditions (most notably Asperger's) against AS as an organisation. Andy Dingley (talk) 15:16, 10 December 2009 (UTC)

I agree with most of what you wrote, however can we please refine the first sentence into sth. more eloquent, sophisticated? If there can be any currently accepted general "mainstream" view of autism (...) Please see also Classifications by ICD, OMIM etc. When I wrote earlier that I would like to know who in the scientific community does not view autism as a condition, I rather wanted to point out that if possible I would like to see proof that some scientist do not consider autism as a disease. Not by referencing a book review, but by a statement from a Professor, a published paper, etc.? If we write that there are different views within the scientific community to what extent Autism is a medical condition, I would not have any problem with it, but by simply stating that parts of the scientific community do not consider autism as a disease without a source, I do have my problems with it. --Meisterkoch (talk) 16:57, 10 December 2009 (UTC)

That first sentence is clumsy, so feel free.

"I would like to see proof that some scientist do not consider autism as a disease." is problematic, as it depends on precise definitions of disease. Barring some autistic equivalent of Helicobacter pylori, I think we're unlikely to see a cause from infectious disease, but just try telling that to the parents of NT kids in a classroom with an autistic kid! As "disease" is so widely (and wrongly) equated with infectious disease, I'd suggest that our most neutral wording would be to avoid it generally in favour of "disorder" or "condition".

If we re-phrase your request as, "I would like to see proof that some scientist do not consider autism as a disorder.", then I know of no such scientist. When I've heard that opinion expressed, it hasn't been from scientists, acting in a scientific capacity. As non-scientists do most of their publishing through wordpress, livejournal etc., any supporting citations would probably (and wrongly) be removed as WP does so like to shoot the messenger's medium. It's not a view I hold myself, but there are those who do and we're required to respect that. There are certainly analogies with deafness and homosexuality, both the cultural aspects of deafness compared to cultural autism (however isolationist they might be seen as) and also the medicalisation of homosexuality and the attempts to "treat" it by medical intervention through the mid-20th century (and sadly, more recently).

This isn't an article on "causes of autism" though, it's on Autism Speaks. Their notability (and the source of their friction with much of the autistic community) is that their view of autism is at the extreme end of "disease", such that they see it as so wholly negative that a cure is paramount, rather than any level of acceptance of it as a "difference" in a person's nature (and the analogies with the treatment of homosexuality in the 1950s are very obvious). This is not a view that's shared by most scientists. Even scientists accepting a "disease" cause and description of autism (which I'd see as a majority view, provided that we keep to a medical definition of disease and one that includes internal dysfunctions as well) don't generally go this far.

The crucial point that this section must convey isn't a distinction between "general disease view" vs. "autistic community difference", it's instead between "general disease view" and the 'curebie' "curable, cure-essential, disease that should be eradicated forthwith" view that seems so specific to Autism Speaks. Andy Dingley (talk) 17:54, 10 December 2009 (UTC)

I think there are two possible ways of interpreting the first sentence. One is that people object to Autism Speaks because Autism Speaks believes autism is an acquired condition that can be cured, and therefore are diverting millions of dollars into research that has virtually no chance of producing anything useful, since it is generally agreed that autism cannot be cured. The other possible interpretation is that people object to Autism Speaks because Autism Speaks believes that, should a cure be found, it should be given to pregnant mothers so that they will not run the risk of giving birth to an autistic child. Do we know which sense was meant? The PDF simply contains the same phrases almost verbatim so there's nothing much to see there. -- Soap ^Talk/_{Contributions} 18:19, 10 December 2009 (UTC)

Recent changes are original research

The recent changes to this article cause the article to disagree with its sources, which is a no-no. The source says that "many" autism scientists think that autism is a disease, not "some". And the source does not say that these scientists think autism is "curable", so the article should not say that. Nor does the source say anything like "many of whom have an autistic spectrum condition themselves", so this article should not say that. Nor does any source say "These two views from polarised opinions have each reacted acrimoniously to the other. Autism Speaks's standpoint is decried as the "curebie" view and criticised for its wholly negative portrayal of autistic conditions." so our article should not say that. Nor does any source say "Autism Speaks have responded to such criticism with legal threats.", so our article should not say that. Finally, can I please ask that citations not be reformatted into one-line-per-parameter format? Let's just keep their format they way they are. For now I am reverting the abovementioned changes, as they constitute original research and thus can't be in Wikipedia; I suggest discussing them further here first, so that we can come up with something that isn't original research. Eubulides (talk) 18:23, 10 December 2009 (UTC)

You've claimed that both:

* This section disagrees with its sources

* This section has no sources

You can't have it both ways.

Secondly, the claim of legal threats (which certainly does need sourcing) was already referenced (New Scientist) shortly afterwards, where the threat was discussed in detail. Duplicating the cite to the first mention too was editorially ugly, but hardly difficult. Andy Dingley (talk) 19:41, 10 December 2009 (UTC)

• I did not claim that the Portrayal of autism section had no sources. It clearly did (and still does). However, the recent changes to the section contained much material that was unsourced, and introduced text that disagreed with the sources that the section cited. This contradicts Wikipedia policy.
• The cited source nowhere said "legal threats", and the article's use of emotion-laden language like that is clearly introduction of editorial POV, contrary to policy. The cited source did mention demands, but this topic is already covered in the next paragraph, which cites that source and talking about "legal demands"; reiterating the topic in the first paragraph and escalating it to "legal threats" is clearly a POV and a WP:WEIGHT violation.

Eubulides (talk) 22:02, 10 December 2009 (UTC)

I forgot, there was one other paragraph that was unsourced:

'If there can be any currently accepted general "mainstream" view of autism, it would be of it as one or more medical conditions with an acceptance that there is little current understanding of its causes, and even less prospect of reversing it.'

This is also original research, of course; we can't say that on our own. And one other thing: the book review in question is by Simon Baron-Cohen, one of the world's leading autism researchers; this is a reliable source. Eubulides (talk) 18:25, 10 December 2009 (UTC)

Then you ought to delete the entire section, because you've removed any meaningful content from it. Why not state that, "Autism Speaks's advocacy has been based on the view of autism as being suffered by bipeds with opposable thumbs, a view shared by many autism scientists" It's not inconsistent with any claims made, and it's equally meaningless.

Autism Speaks's advocacy is not based on the view of autism as a disease, but on the view of autism as one very narrow interpretation of disease: wholly negative, and in desperate need of a cure. Where they diverge from the mainstream is in the narrowness of that view, not in seeing a disease in the broader sense. Andy Dingley (talk) 19:35, 10 December 2009 (UTC)

The current text is supported by a reliable source; our opinion about Autism Speaks's advocacy do not trump that of a reliable source. I don't know of any reliable source that talks about Autism Speaks with reference to bipeds with opposable thumbs. Eubulides (talk) 22:02, 10 December 2009 (UTC)

The hugely important reference that you talk about (Living Googles) is an irrelevance to this section, highly misleading as its not a direct comment on Autism Speaks (as might be thought from its use here), and the article would be better if this cite was removed from this section.

That reference is Baron-Cohen's review of Murray's book, both of whom have different, but relatively centrist, viewpoints. Murray's is clearly closer to the "difference not disease" stance than Baron-Cohen, who is now advocating a genetic explanation for both classical autism & Asperger's. Although this review & ref does literally place the text "a view that many but not all autism scientists would endorse." alongside a quote from Autism Speaks, this is in the context of commentary on Murray, not on Autism Speaks. It should certainly not be read as Baron-Cohen advocating Autism Speaks's own position (and its extreme nature) as being shared by "many but not all" scientists. It is misleading to describe Autism Speaks's position as simply "autism is a disease" because they are far beyond this (unmentioned in the Living Googles ref), way past any common consensus outside their group, even amongst the mainstream "scientists who see autism as a disease" view. Andy Dingley (talk) 13:26, 14 December 2009 (UTC)

No reliable source has been proffered to support the claim that Autism Speaks is 'far beyond this (unmentioned in the Living Googles ref), way past any common consensus outside their group, even amongst the mainstream "scientists who see autism as a disease" view'. I am skeptical that this claim is true, and it would need a reliable source to be in the article. In contrast, Baron-Cohen is a reliable source for a summary of the mainstream view and its relation to Autism Speaks. Baron-Cohen himself advocates the minority "difference not disease" position, by the way, so the previous comment seems to be based at least in part on a misunderstanding. The book review by Baron-Cohen is a reliable source by one of the leading experts in the field, and its paragraph discussing Autism Speaks is directly on point. A better (lengthier) source would be welcome but in the meantime there's no good reason to remove this source. Eubulides (talk) 16:47, 14 December 2009 (UTC)

The difficulty with RS for comment on Autism Speaks is the typical WP problem of rejecting primary sources. Their own material is enough for the "autism MUST be cured" position. A moment's searching through the autism community discussions, particularly for "curebie", will turn up the reaction to this. I don't expect you to accept these as RS, but they might change your skepticism.

If you could please direct me to the Baron-Cohen "paragraph discussing Autism Speaks" then I'd be grateful. There's a mention of them in passing, but it's still about Murray's views, in an article on Murray's book. It's not specific enough about Autism Speaks to be of any useful value to us here. The reference doesn't support this section, it's merely cited by it, as little more than a proof by authority.

Nor do I know what Baron-Cohen's current position is. I used to think he was sympathetic to the "difference not disease" position from the community, but the last statements I've seen from him were those horribly politically inept recent press releases on genetic testing for autism. Even allowing that poor framing of them might have allowed their true intent to be misrepresented, they're a pretty clear indication that he holds a "genetic" viewpoint, and they were far from helpful to the community view. Agreed, if we're taking a technical interpretation of meaning, this isn't contrary to the "difference" position, but it's the sort of "WP:RS" comment that means one thing, yet is taken to mean quite the other when in mass circulation. Andy Dingley (talk) 17:15, 14 December 2009 (UTC)

• I agree that there is a sourcing problem, just as there would be a sourcing problem for the criticism that Autism Speaks is yet another charity that fleeces unsuspecting donors and diverts large sums of money into its own pockets (another criticism that can easily be found among unreliable sources). But a Wikipedia article on X is not supposed to be a dumping ground for all criticisms of X, no matter how poorly supported. (If that were the case, the Barack Obama article would be overwhelmed by material supplied by critics of every stripe and persuasion, no matter how fringe.) We need to have reliable sources that talk about the topic and place criticisms in context.
• The paragraph that discusses Autism Speaks is the final and concluding paragraph of "Living Googles?" (PDF). Baron-Cohen's position that autism's causes are mostly genetic is clearly the mainstream position, and it is not at all inconsistent with his (less-mainstream) position that autism should be viewed as a difference and not a disease.
• I don't understand the last sentence of the previous comment. The first paragraph of Autism Speaks #Portrayal of autism accurately summarizes the source. If it could be written more clearly, could you please propose a specific wording change to do that?

Eubulides (talk) 19:47, 14 December 2009 (UTC)

Problematic text moved from article

In June of 2008 another autistic blogger was met with legal demands by Autism Speaks after designing a shirt critical of the organization. The shirt's claimed "Autism Speaks can go away, I have Autism. I can Speak For Myself." Autism Speaks complained to the third party vendor who manufactured the shirt that the shirt violated copyright and trademark. [2][3] The complaint was later rejected by the third party vendor. Autism Speaks claims to have not made this allegation[4] but communications with the third party vendor indicate they were made by Autism Speaks.

• The first source is self-published and as such is only a reliable source for the author's personal views.
• The second source is also self-published, and is not attributed to any author, and the entry ends with a note that says Wrong Planet isn't really sure what happened.
• The next sentence (The complaint was later rejected by the third party vendor) is original research and doesn't match the letter printed in the second source.
• The third source is again self-published and therefore reliable as a source of opinion, but the text above doesn't match what the source says.
• The remainder of that sentence (communications with the third party vendor indicate they were made by Autism Speaks) is original research.

All in all, what we're left with is a series of confusing and dubious claims and counter claims, none of them made by reliable sources. This doesn't belong in Wikipedia unless its gets better coverage. SHEFFIELDSTEEL^TALK 14:50, 22 July 2010 (UTC)