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Perusing the IRS form 990’s for some autism organizations

18 Mar

How big are more outspoken autism organizations? How much do they support research? How much do they pay their executives? This became a big question about a year ago when it became public how much Autism Speaks pays their top people. Since the 2009 form 990 (IRS forms from non-profit organizations) are now public, I thought I’d take a quick look at some of the organizations out there. More importantly, we are in a tough financial time and charities get hit hard in recessions.

Autism Speaks

revenue: $45.5M down from $66.4M
Expenses: $43.6M down from $73.1M
Assets: $10.8M up from 8.9M

30 people listed as officers/directors.
14 people listed with salaries >$100k

Total salaries paid–$16.5M

Program services expenses:
$17,362,551 in research
$10,238,612 in awareness
$814,016 grants to families
$2,276,703 in other program service expenses

ratio of salary to program service expenses $16.5M/$30.7M=0.53

For those who want to know, Geraldine Dawson’s salary is $409,382. Very high, but also not as high as was reported last year. The previous year included many one-time expenses involved with her move to Autism Speaks.

Generation Rescue:

revenue: $641K down from $1,190k
expenses: $843k up from $745K
net assets $213k down from $445k

Salaries:
Stan Kurtz is now listed as “former” president. Salary: $129,167
Candace MacDonald: $100,000 in salary. Listed as president.

They spend about $19k on their website/year
biggest single expense (other than salary) is marketing, at $169k.

they list an expense of $729,340 for “GENERATION RESCUE PROVIDES EDUCATION, MEDICAL ASSISTANCE AND TREATMENT FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS, DIRECTLY IMPROVING THE CHILD’S QUALITY OF LIFE FOR ALL FAMILIES IN NEED”

They spent $23k on research.

ratio of salary to program expenses: 364,686/729,340=0.50

The ratio of salary to program expenses is basically the same as for Autism Speaks.

National Autism Association (NAA)

revenue: $542K down from $595k
expenses: $696k up from $570K
net assets: $62K down from $216

no salaries for organization officers listed

15 people listed as officers/etc. (including Katie Wright, Dierdre Imus)

expenses:
$434k in “building a solid foundation” for the NAA. Public awareness, etc.
$75k in crisis support–direct support to families in case of disasters, deaths, etc.

ratio of salary to program service expenses: 134,511/509,232=0.26

The ratio of salary to program services is much lower than for Generation Rescue or Autism Speaks.

SafeMinds

revenue: $196K down from $24k
expenses: $126k down from $179K
net assets: $187K up from $117k

no salaries for organization officers listed
14 people listed as officers/members

Expenses
$41K in research
$31k in website/PR
$23k for conferences
$15k to the Age of Autism
$29k to Thoughtful house

ratio of salary to program service expenses: 0/96,016=0.0

This is the only group with a zero ratio.

TACA (Talk About Curing Autism)

revenue: $841K up from $780k
expenses: $912k up from $847k
net assets: $477K down from $532k

4 people listed as board members/etc
One compensated, at $44k/year

expenses
$349,565. Meetings/conferences/seminars for parent education
$135,753. Print and electronic publications
$99,472. direct financial support to families

ratio of salary to program service expenses: 320,442/586,12 4=0.55

This is similar to Autism Speaks and Generation Rescue.

Checking a few figures.

First, it was claimed a while back that the National Autism Association had thousands of dues paying members. The lowest dues level for the NAA is $35/year. The amount of dues collected was $12,465. This suggests a maximum of 356 dues paying members.

Second, the $15k payment to the Age of Autism intrigued me. Age of Autism portrays itself as an autism organization in advocacy efforts. They are not, however, a charitable organization. The Age of Autism is a limited liability corporation registered to Dan Olmsted. Because of this, financial records are not public. But we can attempt an estimate with public information:

Age of Autism has 4 sponsors listed on their website. (SafeMinds, Generation Rescue, the National Autism Association and TACA). Assuming that all 4 are paying $15k per year, this would mean $60k/year from sponsors. In addition, they received advertising revenue. A link on the top of the Age of Autism blog takes you to where you can see advertising rates. AoA has two types of ads, leaderboard ads (at $10/day) and sidebar ads (varying from $25/week with no image to $250/week for a large ad with picture). They have no leaderboard right now, but 6 sidebar ads. Using an estimate average of $210/week based on the sizes I see (and the fact that this divides easily by 7), that gives $30/day per sidebar. I am assuming that the ads for the books are gratis. If they fill the leaderboard ad, AoA could be getting $190/day from advertisements. 365 days of that gives $69,350. Together with sponsorship, the Age of Autism is bringing in an estimated $129,350 a year. They have to pay for hosting, but they also get donations. They do not specify how the money is distributed.

LeftBrain/RightBrain shame Age of Autism into half-hearted apology for gun violence

14 Mar

Via Facebook of course, not on their actual site:

Funny thing though, I would’ve thought that to be included in an image archive entitled ‘Fan pics _from_ Age of Autism’ it would’ve had to have been approved _by_ Age of Autism..?

Also note the lack of apology for the rampant anti-vaccine part of the image – just the gun violence. Age of Autism fail to see that by promoting an anti-vaccine message they are still condoning violence – just a different kind of violence.

Age of Autism threaten doctors and also make clear how anti-vaccine they are

12 Mar

On a Facebook page entitled ‘Fan photos from Age of Autism‘ you will find this (click for bigger):

Lets not kid around here, this is a direct threat of violence towards people carrying ‘syringes’ i.e. people who might want to vaccinate children. I have no idea if Jenny McCarthy has any knowledge of this photo but its clear from the title ‘fan photos _from_ the Age of Autism, that Age of Autism clearly do.

Lets also be clear about the utterly anti-vaccine message of this image. The editors continually describe themselves as ‘pro-vaccine safety’. Let me suggest to them that creating a picture of Jenny McCarthy threatening people carrying syringes in a medical setting isn’t pro-vaccine safety. Its anti-vaccine pure and simple.

Age of Autism have a good old cry on Twitter

22 Feb

Back story: as Sully blogged the other day an American political cartoon strip had a bit of a dig at the anti-vaccine brigade. This provoked the following response from Age of Autism:

Yeah, thats right, Age of Autism truly see themselves as a victimised minority group. No really. They do. They’re putting themselves on the same footing as every Suffragette, every victim of Apartheid, every disabled activist and every poverty stricken member of a developing country thats ever lived.

Age of Autism have a slogan ‘the bull stops here’

and they’re absolutely right – thats exactly where the bull stops. In fact, it not only stops, it takes its slippers off, puts its feet up and stays for ever.

Age of Autism, you really need to get a grip. Maybe a name change might help (click for bigger).

Fact checking the Age of Autism’s defense of Andrew Wakefield

11 Jan

The BMJ article, How the case against the MMR vaccine was fixed, has had a lot of media coverage in the United States. With that coverage has come the defense of Andrew Wakefield, by himself and a few others. As a part of the defense (arguably the bulk of the defense) has been an attack on Brian Deer, the investigative reporter who wrote the article. I say attack because the main accusation, as you will read below, is false. Easily verified as false.

Consider this, on CNN’s Anderson Cooper 360, Mr. Wakefield made the accusation:

WAKEFIELD: Well, that’s interesting you should say that, because he was supported in his investigation by the Association of British Pharmaceutical Industries, which is funded directly and exclusively by the pharmaceutical industry. So…

On CNN with Ali Valshi, Generation Rescue founder J.B. Handley made the following statement:

“The British Medical Journal is only publishing allegations from a single investigative journalist named Brian Deer, who was funded by a pharma front group for four years to investigate Andy Wakefield.”

He later states that Brian Deer was “…funded by pharmaceutical groups from the getgo”.

Where did this accusation come from?

In a blog post, Mr. Handley let’s us know how he came to this conclusion:

In fact, Deer was originally funded to investigate Andy by a front group for the Association of the British Pharmaceutical Industries, just as Andy Wakefield said. From a confidential source:

“Deer was provided with free assistance by Medico-Legal Investigations a company owned and controlled by the Association of the British Pharmaceutical Industry – I have documentation on this. MLI specialise in getting medical doctors prosecuted by the General Medical Council. And that was done before he published in The Sunday Times in Feb 2004.”

We also see the story shifting we also see the story shifting. Instead of “funded from the getgo” or “funded by a pharma front group for four years” we find that he was given “free assistance” We don’t even know how much free assistance.

An unsupported assertion is made that the company is “owned and controlled by the Association of the British Pharmaceutical Industry”.

At least we have something we can verify. A claim like this should be verified, one way or the other. So I did. I contacted Medico-Legal Investigations. I posed a simple question:

You may be aware that Brian Deer has recently published the findings of his investigations showing that Andrew Wakefield committed research fraud in his investigations into MMR and autism. In retaliation, Mr. Wakefield and his supporters are claiming that Mr. Deer is conflicted himself. As part of this, they claim:

“When Brian Deer began his investigation of Andy Wakefield, he was supported by a pharmaceutical front group”

To support this, they claim:

“Deer was provided with free assistance by Medico-Legal Investigations a company owned and controlled by the Association of the British Pharmaceutical Industry – I have documentation on this. MLI specialise in getting medical doctors prosecuted by the General Medical Council. And that was done before he published in The Sunday Times in Feb 2004.”

Can you confirm whether this statement is, in fact, true?

The response?

The statement in bold lettering is totally false. We had no idea he was undertaking this investigation until he was about halfway through. At that point, and knowing that we were the only people in Europe experienced in the investigation of research fraud and misconduct, he contacted us to seek advice on a general issue related to Ethics Committees. We had a one off meeting with him and were able to offer guidance without knowing the details of the confidential investigation. I would like to know how anyone can say we are a pharmaceutical front group – we have always retained our independence.

We have never been owned or controlled by the ABPI – that is complete and utter nonsense. We have been supported by the ABPI and, indeed, the medical Royal Colleges. In order to ease our cashflow crises (there is never enough work to cover the costs of running a business) a few pharma companies paid an annual subscription to us in return for reduced rates for training and investigations. That does not mean that we were controlled by them. I pay annual subscriptions to magazines and get cheaper copies but I do not have editorial control!

Finally we specialise in the investigation of possible fraud/misconduct in research. When we are 70% certain that we have enough evidence to prove serious professional misconduct we report the facts to the GMC who conduct an Inquiry into the allegations. We also investigate other health sector matters and if a criminal offence is disclosed we report to the police or embark upon a private prosecution through the lawyers of our clients (other statutory bodies). The protection of patients is primarily our concern.

I hope this helps

Shall we count the errors in Mr. Handley’s attack?

1) Medico-Legal Investigations had no part in the investigation. They only offered a one-off meeting on medical ethics. Medico-Legal Investigations was unaware of the specifics of Mr. Deer’s investigations.

2) Medico-Legal Investigations is not “owned and controlled by the Association of the British Pharmaceutical Industry”. Thus it is not a “front group”.

3) On top of all that, Mr. Deer was not even funded by Medico-Legal Investigations.

4) The association with Medico-Legal Investigations was a simple meeting, as Mr. Deer was over half way through his investigation. The association was not “from the get go” and was not “four years” (funded or not).

In essence, we see what Mr. Wakefield and his supporters are reduced to: a publicity campaign. Get their message out, accurate or not. Attack the source rather than address the allegations.

Book Sales: The Age of Autism and Callous Disregard

15 Dec

I tapped my source one last time for book sales figures for “The Age of Autism” and “Callous Disregard”. The Age of Autism was written by Mark Blaxill (board member of SafeMinds and one of the three principle editors of the blog, Age of Autism) and Dan Olmsted (former UPI editor, principle editor and, from what I can tell, owner of the Age of Autism blog). Callous Disregard is Andrew Wakefield’s account of the events which landed him before the General Medical Council and resulted in him being removed from the UK medical register.

Total book sales to date:

Age of Autism: 2301
Callous Disregard: 2925

Last week five copies of Callous Disregard were sold.

Last week The Age of Autism sold 130 copies–38 in Minneapolis St. Paul and 35 in Norfolk, Virginia. This appears to coincide with book signing events in those locations. The week before that, The Age of Autism sold 57 copies.

These figures must be disappointing. If not to the authors, to the publishers.

I may post an update with this week’s book sales. Either way, there isn’t much reason to continue the discussion of these books. When they are available in the remainder book outlets (with this few sales, there won’t be a lot of used copies and little chance for paperback editions) I will likely obtain copies of each. I’ve already read them, but they are interesting from a historical perspective. It will be a good exercise to see how these books read ten years from now. If history is kind to these authors, it will be by neglecting them.

Thank you, SafeMinds, for pulling the attack on Skepchick

10 Dec

First some background. Recently, a blogger (at Skepchick.org) started a campaign to inform movie theaters about the advertisements that SafeMinds was placing on their screens. The theaters decided to pull the advertisements. In response, SafeMinds, through their media outlet Age Of Autism and the AoA facebook page, launched a petty attack on Skepchick. The attack went beyond typical cyber bullying, with at least one comment that went beyond the pale. After many hours and much pressure, SafeMinds and Age of Autism edited many of the comments. They have now pulled the discussion entirely from their facebook page. An apology would certainly be in order, and I would appreciate it that if anyone knows of such an apology that they let us know here.

Even in absence of an apology, I would like to thank SafeMinds and Age of Autism for pulling the discussion. It only served to embarrass the autism communities.

Unfortunately, there is more fallout from the harsh response that SafeMinds and Age of Autism brought in response to the theaters’ decision to pull the advertisements. Liz Ditz at I Speak of Dreams reports that the theaters are now refusing actual public service announcements involving flu vaccines.

SafeMinds retaliates against skeptic blogger

7 Dec

SafeMinds is an organization with the stated purpose to “…to restore health and protect future generations by eradicating the devastation of autism and associated health disorders induced by mercury and other man made toxicants. ” SafeMinds has stayed with this purpose even as the years have gone by and the evidence has mounted that the SafeMinds hypothesis was incorrect (autism is not a form of mercury poisoning). Recently, SafeMinds produced an advertisement, framed as a public service announcement, focusing on mercury in the flu vaccine and tried to get these shown in movie theaters. As we discussed here recently, Elyse over at Skepchick started an effort to inform the movie theaters about SafeMinds. Her effort snowballed into a large petition and resulted in the movie theaters deciding to not show the SafeMinds advertisement.

Recently, SafeMinds has chosen to leave the discussion of ideas and take on Elyse in a personal attack, through their media effort at the Age of Autism. SafeMinds is not only a key sponsor of Age of Autism, but Mark Blaxill (SafeMinds board member) is one of the three principle editors of the Age of Autism blog.

Again, rather than discuss the issues, they pulled Elyse’s facebook photo


and posted this message

This is the woman who fought to pull the SafeMinds PSA’s from the theatres. It’s her FB profile page photo. She is anti-choice and wants to tell you that mercury is safe and that Thimeosal is good – according to her blog. She trolls AofA regularly. As do all the pro-vaccine-injury bloggers.

It was a call to mock and insult Elyse. A perfect example of cyber bullying. Amongst the comments to that FaceBook page was one extreme enough that one of the Age of Autism editors noted it and promised to remove it. “While I agree that the broken thermometer comment was out of order (the blog does not condone violent speech, so that comments is going.”

It took a while for them to make good on the promise. As in many hours later, after Elyse reported the abuse to the police. That comment does appear to be gone now. Many other abusive comments (but not all) also appear to be removed.

Rather than apologize for inciting the bullying effort, SafeMinds/AgeofAutism are defending themselves by claiming that Elyse was standing in the way of choice.

Stopping Americans unable to understand? What is she St. Skepchick? She interefered with medical choice and commerce. That’s her right to make the attempt. We dis not use her name. We pulled her public photo that she used here on FB. We ran it on FB, not the main site – our readers deserved to know who was behind (at the outer level anyway) the AMC campaign to stop the ads. We provide news. This was news.

No. It wasn’t news. And, no, Elyse was not interfering with medical choice or commerce. She was quite simply providing the theaters with information–allowing them to make informed consent about the SafeMinds advertisement.

The idea of SafeMinds being pro-choice on vaccines is rather ironic. Again a story from their outlet blog, the Age of Autism makes this clear. Two years ago, a theater in New Mexico was going to show the movie “Horton Hears a Who” combined with a free vaccination clinic. At that time, they had a connection to Horton star, Jim Carrey. Instead of allowing choice, providing information, they got Jim Carrey to force the cancellation of the event:

Following a long discussion with his representatives at Fox Entertainment – Who-ville – once again through Horton – was heard. The New Mexico test market of drive thru vaccines while at the movies with your children was stopped. Halted by Horton himself because he heard “we are here, we are here, we are here!” once again.

The bullying attack on Elyse wasn’t about choice, it was just a childish attempt at some sort of petty vengeance. Unfortunately it got out of control. I thank SafeMinds and the Age of Autism for editing the comments, but even what is left is unacceptable. It’s time for apologies, not excuses.

What would you expect if you gave $1,500 to an “autism” charity

22 Nov

If you do a Google search for SafeMinds the link you get says “SafeMinds Autism Mercury Thimerosal”. SafeMinds considers itself to be a part of the “Autism Collaboration” (which, as far as I can tell, is the group that is supporting Andrew Wakefield now that he has lost his job with Thoughful House). A member of SafeMinds holds a chair on the Interagency Autism Coordinating Committee.

So I think it safe to say that they pitch themselves as an autism charity. If you were to donate, say, $1,560, would you expect some or all of that money to go towards something that might help the autism community?

Well, if you had paid for the the Pass the Popcorn but HOLD THE MERCURY! Safeminds Theatre PSA Campaign that SafeMinds recently put on, you would be mistaken. The campaign was an effort to raise money to put this public service announcement (PSA) into theaters this week.

You can find details, where else, on the Age of Autism blog. If you go there, you will see that three people donated at the $1,560 level, each such donation would put the PSA on 25 screens all week in New York or Los Angeles. Many others donated at lower levels.

The Age of Autism had another fund-raiser recently. That story was met with skepticism even though it was, I have been told, supported by Andrew Wakefield himself. The fundraiser was for legal aide for an autism family. So far, about $1800: enough to put the PSA on a little more than 25 screens. None of the prominent “editors” of the Age of Autism blog came forward in support.

SafeMinds. Age of Autism. At least you know what their priorities are. Autism isn’t number 1, vaccines are.

One might respond that to SafeMinds (and Age of Autism), vaccines and autism are not separate issues. They still subscribe to the idea that thimerosal in vaccines caused an autism epidemic. That by preventing thimerosal containing vaccines being given to infants and pregnant women is, in their view, preventing autism.

To that I answer: why spend money putting the PSA on screens in Los Angeles? In 2006, California law prohibited administering thimerosal containing vaccines to children under 3 and to women who are pregnant. Yeah, they are warning pregnant women and parents of young children against—something they aren’t going to get anyway. But that doesn’t stop SafeMinds from putting an image of a syringe next to big puddles of mercury in front of families.

addendum: it appears that at least one theater chain said no to the PSA.

Society vs Individuals

17 Nov

In amongst yesterdays fun and games, the author of the paranoid piece itself, JB Handley included the following statement:

What parent of an autistic child would write, “my main concern is to create a better world for all people, but especially for people with disabilities. Autism is a great challenge. People with autism deserve respect and support”? Give me a break! A real parent would only have one main concern, the concern we all share: giving our own child the best possible life!

I commented briefly on this paragraph by Handley but the more I mulled it over, the more I thought it deserved its own blog entry.

There are those that believe that even though they are parents, they have a responsibility to society and particularly to the society in which their own child belongs. Sullivan’s child, like mine, is autistic and therefore disabled (amongst other things) and so we (and many of our online friends and colleagues) believe that we owe a debt of responsibility in our writing to both this particular society. We believe this for numerous reasons:

1) The betterment of that society is the betterment of the society in which our child resides.
2) Its simply the right thing to do.

However people such as JB Handley clearly believe their own child and no one elses is important. There is no such thing as society in this world view.

This tallies neatly with their other set of beliefs. I’m talking of course about vaccination. To choose to vaccinate is a supremely societal act. When you vaccinate you are saying that not only do you believe in protecting your _own_ child, you believe in protecting the society around him/her. The concept of herd immunity illustrates this perfectly:

More than a hundred years ago, scientists were noting that not everyone had to be vaccinated against smallpox to stop an epidemic in its tracks*. Scientists also noticed that when they were wiping out smallpox, not everyone needed to be vaccinated to have the disease disappear. In many places, it was enough if 80% of the population could be vaccinated and revaccinated in a 4-5 year period.

Why do we do this? Why do we need to protect the herd? We do this because no vaccine is 100% effective. There will always be people who cannot be vaccinated and these people need to be protected. Why? Because its the right thing to do.

Anti-vaccinationism takes the directly opposite path. They claim – as does JB Handley – that it is only ones _own_ child that matters and that society can go hang. By electing not to vaccinate they not only put their own child at risk, they also put the herd at risk. They have forgotten that one of societies greatest accomplishments was learning to work together for the common betterment of us all.

One of the things that speaks most to not just Handley’s set of beliefs but the beliefs of those he speaks to is the idea that anyone could find what Sullivan said as anything but crazy:

A real parent would only have one main concern, the concern we all share: giving our own child the best possible life!

Remember that when these parents march ‘together’ they are nothing of the sort. They are a group of individuals looking out for No.1 and No.1 only.