Friday, December 20, 2013

Autism Speaks Under Pressure, Doles Out Grants

This post has been altered in order to move the Autism Speaks spending discrepancies screen shots up higher in this post, since people are searching for them:

A discrepancy has been found in the amount of money Autism Speaks claims to have given to individual states. Someone in Mississippi tracked down the real amount of money Autism Speaks has spent in the state. Although Autism Speaks says it provided $62 million to the state, Autism Speaks representatives found only $34,000. Read about that here: Autism Speaks: Where Millions of Dollars Turns Into Thousands 

Autism Speaks made the same $62 million claim in numerous states, verified by looking at archives. Once the pressure was on to come up with the real figures for Mississippi, Autism Speaks quickly removed the figure from that state's page. It also removed the same claim, of $62 million, or variously, $92 million, for specific states from those state websites. The $62 million figure was used over and over, perhaps misleading people who thought a lot of money was being spent in their state. If the Mississippi amounts are correct, some states are getting much less funding than Autism Speaks has claimed. The current claim is that "nationwide, we have funded over 62 million in these areas," with the areas being "science and research," "family services," "awareness," and "advocacy." No breakdown of what gets spent in each area is given, but from the Form 990, we know that 4% is what is allotted to family services, and 4% divided between 50 states is not much. From the Autism Speaks financials for 2011 and 2012 there is a statement that $5,926,802 is obligated to family service grants. If one divides this almost 6 million figure by 50 states, that's about $118,000 per state. 

Below are screen captures for some of the numerous images from pages that claim to have funded "over $62 million" to many states. I have put in ten of them. I am sure Autism Speaks will say it was a typo.You can see where they started changing it to "nationwide," and a couple of places where they messed up, like Wyoming, where they claim to have funded both 92 million to the state and 92 million to the nation. 

MORE:  Vermont, Montana, Arkansas, Wyoming, Mississipi, Arizona, Delaware, Nevada, North Dakota, Indiana, and Idaho.

The material that originally appeared first in this post now begins here:

Autism Parenting Magazine has joined the boycott again Autism Speaks, as has Panera Bread. Read about Autism Parenting Magazine here (Please note that the magazine is experiencing an extraordinary volume and overload, and you may time out. You might check back later if this happens. I can't get the page to open right now and so have inserted a less-than-attractive photo of the cover. I will update when it becomes accessible. THANK YOU to Autism Parenting Magazine's leadership and staff!): Autism Parenting Magazine Issue 14: Exposing Autism Speaks 

Editor's Letter Issue 14 of Autism Parenting Magazine on YouTube: Exposing Autism Speaks

Autism Speaks, under mounting pressure from a growing boycott movement, has  announced that it has awarded $700,000 to "to 141 local organizations through its Chapter, Regional and Neighborhood Grants programs." (Note- all links go through 

NEW NOTES: Read this important inquiry into Autism Speaks actual funding and please note that Panera Bread has dropped Autism Speaks. Although Panera Bread says its decision is not based on the boycott, it comes at the same time, and it has let us know its intentions. Make of this what you will.

NEW: Autism Speaks persists in alarmist language. Their new film is entitled "Sounding the Alarm." I could have predicted something like that. Autistics and allies will be protesting this continued portrayal of us as some sort of major disaster on Wed. January 15th. Please join if you are in the Boston area. Details here: Protesting Autism Speaks at Mass General Hospital Wednesday January 15, 2014

Back to the mini-grants. The recipients were awarded "up to $5,000" "addressing the areas of education, recreation and community activities, young adult/adult services, and technology." 

Yes, 141 times 5000 comes out to $705,000, which is not bad for an organization that spends 4% of its budget on "family services." Please note that the $700,000 is not family services but grants, of up to $5000 (not more) to organizations and service providers selected by Autism Speaks Chapters. Some of the things the grants go for are not bad, but Autism Speaks remains committed to its policy of excluding Autistics from national conversations it spearheads, remains committed to its demoralizing portrayals of Autistics and autism, parents and family members, and remains committed to spending most  of its money on its own salaries and on funding research that is heavily focused on prevention and cure of Autistics and autism. Watering down $700,000 into $5000 grants makes it difficult for an organization to accomplish a huge amount, although I am sure the organizations are grateful to have received some money. (The Autistic Self Advocacy Network's call to sponsors to be accountable is here: and 246 responses in less than 24 hours to the "This Is Autism" post are here: This Is Autism Flashblog)

In its press release, Autism Speaks includes their mission statement, which has not been altered, and probably never will be: "It is dedicated to funding research into the causes, prevention, treatments and a cure for autism." Please do not be hoodwinked that Autism Speaks is getting all soft about helping actual Autistic people, or, if they are, the "help" comes with a severe price tag-that of six years of demonizing (literally) us and our autism. 

Because the press release said that the grants could be found on the autism speaks site and the grants database, I searched the grants database and found only 21 grants, not 141. I subsequently did find the rest of the grants, on three other pages on the autism speaks site, none of which were mentioned or linked in the press release. Interestingly, an Autism Speaks Board member, Gary Mayerson, came over onto my Facebook wall to challenge my original post. He said "Everyone is entitled to their own opinion but no one is entitled to their own facts." He did not provide any information about where the grant announcements were, however, perhaps because he has the typical Autism Speaks view that they can do whatever they want without explaining themselves, like when they posted on multiple state pages that they have funded 62 million to each of those states, and then simply removed the statements after being questioned.

Autism Speaks also announced that it has given out 800 iPad2s. Apparently 16,000 applications were received. 16,000 iPad 2s at $400 each, assuming that there was an extra $100 somehow associated (shipping? apps?) for each $300 iPad would be $6,400,000. 800 of them is a bit over $320,000. 

Let us now examine some of Autism Speaks other awards to put this announcement into perspective. I will ONLY be examining grants that were given that have a "research into causes, prevention, and cures." I do not have time to read about every grant, but would like to show (easy enough, but I need to take the time to do it) that Autism Speaks puts way more of its funding into "prevention and cure" than it does by giving 141 organizations $5000 each. 

I found ten Autism Speaks grants that total more than $733,00. Just ten grants (of many) were awarded more than the entire amount of the recently announced micro-grants. They might not be the best examples but I do not have time to research the entire database of LARGE GRANTS given that have an element of prevention and cure of autism. Prevention and cure- and more "This is autism- these families are not living"-type language. 

We need a change and a different direction. $705K sounds big, because for most individuals, $705,000 would be a lot. When compared to the number spent on research into causes and cures, it's a drop in the bucket. Autism Speaks has a lot of drops in its bucket. Some of these grants go back to 2012, but Autism Speaks has been funding research into causes and cures since 2006, and using alarmist language about autism the whole time.

JUST ONE GRANT, of  $675,557, a bit less than half the amount of the 141 little grants, was given in 2011, for "genomic influences on development and outcomes in infants at risk of ASD:" "Research in this area has generated groundbreaking findings regarding risk factors, developmental trajectories and early behavioral and biological markers prior to diagnosis." Recall that Geri Dawson, Autism Speaks' chief science officer, earned $669,751 in 2009, for another interesting and pointed comparison. Here are the ten others, totaling about $733,000:

$59,000 for one grant, for "A system-level approach for discovery of phenotype specific genetic variation in ASD."

$59,000 for one grant, for "prenatal exposures to occupational asthmagens and risk of autism spectrum disorders. "The overall goal of this project is to examine the impact of occupational exposures to asthmagens (agents that can cause asthma) during pregnancy on ASD risk." Prevention of autism is mentioned.

$59,000 for one grant, for "targeting RORgt activity to prevent the development of ASD-related phenotypes.

$110,500.00 for one grant, for "genetic models of autism in human neural progenitor cells, featuring "autism in a dish:" "These cellular models, or “autism in a dish,” can be used to screen a broad spectrum of drugs."

 $58,832.00, for one grant, for "prenatal androgen in meconium" and uses " an enriched-risk autism pregnancy cohort collecting data on potential risk factors and biomarkers for ASDs during pre-, peri-, neonatal and early infancy periods."

$100,000.00, for one grant, for "environmental exposures measured in deciduous teeth...." "Ultimately, this research may provide evidence and guidance for avoiding certain pre- and post-natal exposures to decrease the risk for autism or offer therapeutic targets."

$175,000, for one grant, for "examining the Y chromosome..." "The findings from this project promise to include discovery of novel genetic biomarkers that can be used for early diagnosis and development of novel interventions for autism."
$100,441, for one grant, for "rat knockout models of ASD: " Scientists at SAGE Labs have now developed a strategy for creating knockout (KO) rats and under a novel partnership with Autism Speaks are generating ones with mutation in ASD susceptibility genes." (The rats have reduced play and increased "perseverative chewing." Um, rats chew. If they don't, their teeth will grow through their heads. Just saying. Anyway, back to the database.

$99,100, for one grant, for "effects of oxytocin receptor agents in mouse models of autism spectrum disorder phenotypes. More "autistic mice"... "There are no drug treatments available to alleviate the social deficits associated with autism spectrum disorders (ASDs). However, nasal spray administration of the prosocial hormone oxytocin (OT) improves social deficits in ASD patients and thus appears to be a possible option for ASD treatment."

$112,100, for one grant, for integrative system biology of iPSC..." "They expect to discover not only new molecular mechanisms that might be important for the development of autism, but also new therapeutic targets which might help alleviate the disease." 

There are more but I think these ten will suffice.

Two notes:

1. I have had to change some of my material here, after finding that the grants in question are located in other places on the Autism Speaks website and not on the grants database. At first I questioned the number of grants, since only 21 of thee 141 appear on the grants database. Much of the rest of this article remains the same. I intend to be accurate and have to retract the statement I made. In this case, I did manage to find the 141 grants that were given out this year- but not where Autism Speaks said they were in the press release. I probably should not rely on Autism Speaks as a source for searching their own sites, given the egregious items to be found there.
Autism Speaks has been dropped by Panera Bread! An important development. Plus, I can now eat at Panera Bread! My family will be going to Panera Bread to thank them (and to eat!)

1 comment:

Paula said...

Autism $peaks is a corporation, first and foremost, with lots of free press and advertising from major television networks and national newspapers who report on them without ever seeming to examine their accounting practices or the success of their programs and research. Unless we hold them accountable no else will.

From one Paula to another, I can't tell you how much I appreciate the work you've done here and elsewhere. Many, many thanks. I believe that every post, every comment in support of the Autistic community at large is one more documented piece of evidence that we are here and we matter.

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