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Is Autism Speaks Mis-Spending Its Money? Your Opinion Requested

By September 10, 2009

Autism Speaks is by far the largest organization in the US - and one of the largest in the world - dedicated to autism-related research, funding, and related activities.  They are also one of the most controversial, for a variety of reasons all of which are laid out in an Examiner.com article entitled "Why autistic people don't like Autism Speaks."

You can read the Examiner article (or search this site for my perspectives) if you want to read the history of Autism Speaks.  What's new in the Examiner article, though, is a review of Autism Speaks' tax returns -- which, at least to author Marc Rosen, are shocking:

Autism Speaks has released its 2008 990 tax return form, which is the primary source of the following information regarding its finances. According to their 990, Autism Speaks has 36 employees who were compensated over $100,000 this year.  The highest paid employee listed, their Chief Science Officer, Geri Dawson, was compensated $644,274.  That's better than most people make in fairly good positions at Fortune 500 companies!  ...

In total, they spent $17,756,876 on employee salaries, pensions/401ks, benefits, and payroll taxes.  By contrast, their grants to individuals and communities totaled a paltry $66,670, not even a drop in the bucket compared to their total reported expenditures. Based on that information, it is clear that Autism Speaks does very little with their money to help autistic people and their families...

Having worked in the non-profit world all my life (mainly for major museums and universities), I have to say that I'm not a bit shocked.  In fact, I'd say that executive salaries, fundraising and general operating costs for most of the non-profits I've been involved with are similarly high.  I'd also mention that, in many cases, executive level pay is many times more than the pay offered to mid-level employees.

I have never, though, worked for a philanthropic foundation - and a large part of the Autism Speaks organization is all about giving away grants.

And I've never been on the staff of an organization whose focus is on supporting individuals and families coping with a particular disorder - and that really is the purpose of Autism Speaks.

Like some of you, I've attempted to contact Autism Speaks directly and never gotten any further than the media relations person.  I've spoken with Geraldine Dawson who heads the organization, but only prior to her appointment.

For those of you who are familiar with Autism Speaks, or know more than I do about the inner workings of Autism Speaks-like organizations -- should we be shocked?  Are these tax revelations just par for the course, or are they upsetting indications of a bigger problem?

Share your thoughts!


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Comments
September 10, 2009 at 10:30 am
(1) jonathan says:

Autism speaks misspends its money by giving neurodiversity researcher Laurent Mottron half a million dollars when he is against a cure and says autism is not a dysfunction but a difference. They misspend their money with their autism in the workplace dog and pony show and yet don’t have a single person with autism working in their organization. They misspend their money on ads saying that if kids don’t get certain treatments or insurance is not reformed they won’t be able to make friends. Probably other ways they misspend their money also, but neither you nor Marc Rosen mentioned those three examples.

July 26, 2011 at 4:27 pm
(2) Mary Tormey says:

I think they are putting their money into meeting the goal of selling drugs for Autistic people who do not want or need or need them. They are lobbing to force insurance companies to pay. As a branch of the pharmaceutical industry they are doing their part to make sure that drugs are purchased even if no sane person would buy or use them willingly.

September 17, 2011 at 10:58 pm
(3) theo says:

most autistic people support neurodiversity so they had to begrudge some money to that person.

September 10, 2009 at 12:50 pm
(4) Linda says:

Any wonder why I won’t give a dime to Autism Speaks even though I have an autistic son. My money is better spent on paying for necessary therapies out of my own pocket than helping to fund the excessive salaries of the executives of this so called non-profit. They live extravagant lifestyles while my husband and I are facing bankruptcy. It makes me sick to think they are making money off the backs of the children they allege to care for so much. 17 million in salaries and benefits with only 66,000 spent on grants…Shame on them.

September 10, 2009 at 2:29 pm
(5) Sandy says:

First, I am not a large fan of AS and never have been. Not sure where that person got all those figures, some of them are correct. Did any bother to look at the whole 59 page 990 before making a judgement based off this article? Did anyone look at where a lot of money went or is the only thing here that ‘they have more than we do’? That’s obviously the writers intent. Most organizations don’t even give funds to families, they generally do not fund an individuals therapy for kids. Yes, there is very little given directly to families, but look where a large amount does go. These people were making a ton of money prior, I of course am much lower on the income totem pole but should what my income is have me base an opinion on others that they should fork some on over to me? It is not anyone’s problem of my financial issues but my own. Once any one looks to see where funding went, I suppose we can argue that as well since no one seems to like anything they fund.

Yea, I don’t much care for that film they made. It was a shock video, much like the shock ads you see every where. There’s much more to a child with autism than a screaming melt down 24/7, and kids who never smile. We certainly have our bad days but obviously that video depicted ‘their’ kids, not mine. Yea Alison Tepper Singer verbalizing her thoughts of suicide was probably not the best choice but she was speaking of her own self and the fact that she was speaking at all means she didn’t proceed with the plan. Now you have NAA sending out letters that many moms and dads are committing suicide, getting divorces and filing bankruptcy all because ‘we’re still waiting’. Odd thing is, nationally, people commit suicide, get divorces and file bankruptcy and many never had a disabled child at all. They’re saying parents are so distraught, they don’t even know which to tackle each day with their child. I don’t like many of the ads organizations put out, and most of them are for public shock value and many of them display false info.

Does any one care if I don’t like Autism Speaks? I think any one employed or providing therapy to children with autism are ripping us off and are being over-paid, more so the ones who only except cash as payment. If one wants to pick apart a 990, go look at the whole thing than just the part of funding to families and then comparing their lives to our own. There’s no way any Org is going to pay up for the zillion diagnosed with autism and their therapies. Go take a gander at other’s 990 as well.

I am not shocked a bit. I’d rather spend my time arguing insurance reform or education for children than attempting to reform an Org.

October 6, 2010 at 7:17 am
(6) Cindy says:

I looked at the whole IRS 990 form. And she’s NOT wrong.

July 26, 2011 at 4:34 pm
(7) Mary Tormey says:

Go to the Autism Speaks website and see for yourself they are employing people who’s interests are in conflict with the Autistic population. Peter Bell of J&J and Autism Speaks was involved in the marketing of Risperdal. I was forced to take that drug and I know personal that it is not safe.
I am Autistic I do speak please join this group and help us defend ourselves.
https://www.facebook.com/group.php?gid=115951075410

July 26, 2011 at 4:55 pm
(8) Mary Tormey says:

Sometimes it is hard for normal people to see the big picture, but, I have experiencing this first hand. I was a tax payer when I was forced to take Risperdal against my will, now I depend on the government to aid in my recovery. They wasted over $40,000 just on drugging me for less then 3 months, but the services I need are being cut. As a person on Medicaid dangerous drugs are marketed to me constantly and a person like me could even pull in an extra $3000 a month selling prescription drugs. When I saw that puzzle piece, I was able to put things together. This appears to be the work of the same person who marketed Risperda, Peter Bell of Johnson & Johnson, and Autism Speaks.
Why does insurance cost so much? prescription drugs
Why is education being cut? prescription drugs
What is Autism speaks lobbying to sell? prescription drugs

September 11, 2009 at 10:57 am
(9) J. Marquez says:

“And I’ve never been on the staff of an organization whose focus is on supporting individuals and families coping with a particular disorder – and that really is the purpose of Autism Speaks.”

If this were a question the answer would be no. Autism Speaks “supports” research. Autism Society of America, on the other hand, supports the families. How? They have camps, support groups, referral of services, information on the types of services through presentations, advocacy, etc.

If Autism Speaks wants to do something as far as research and medical coverage their purposes would be best served in getting the insurance companies to cover autism and services for people with autism. But they really aren’t there for the families, they are there for themselves (so it seems).

September 11, 2009 at 11:14 am
(10) autism says:

To be fair, Marquez, Autism Speaks has a grant program that supports a variety of child and family-centered activities. AS has also been very involved with insurance-related advocacy (though some folks don’t love having AS interference in the process of negotiating with state government).

My frustration with all this is that AS tends to step in, push others aside, and take charge — whether or not they’re asked. And they have gobbled up a great many smaller groups, so that power over how $ is used and spent winds up in a very few hands.

Lisa

September 11, 2009 at 12:31 pm
(11) Danielle says:

So where is the money going and how exactly are they helping families? This concerns me. I ‘m doing the Tempe Autism Walk this November. I am trying to raise money, but I would like to know what I’m raising it for.

September 11, 2009 at 1:33 pm
(12) Marie Duggan says:

Before Autism Speaks came along, we were in the trenches long before them. They took over our walks, the communities that raise the money for the walks gets left with nothing! They say they have all these community grants that you have to apply for but then you get rejected like I did 3x’s and they lied repeatedly to me. Word is spreading quickly that they are not all they are cracked up to be!

September 11, 2009 at 1:58 pm
(13) Sandy says:

I actually disagree that AS is stomping out the little groups, those little groups never had the opportunity to address many of the people AS can approach. Then at the same time, it’s a shame to fault donors of who they donate to. The smaller groups also would not generate those kinds of funds and there wouldn’t and never was that much to spread around in peoples hands from those smaller groups.

AS is about research, that’s where the bulk of the funds go to. The link to their 990 is right on their site to view where those funds went. That’s how Autism Speaks is mainly helping families. Research. And you’d think since AS is not run by the CDC, that the research would be applauded. No smaller group could have or did achieve that, however that smaller group is in disagreement as to what that research should be. That’s the power struggle. It’s kind of like the ‘poor me’, they’re getting tons of donations and are being paid a zillion while I have much less. They’re not the only ones with high incomes and in my whole like, I’ll never be on that side of the fence. It’s kind of like my kid at ToysRus during their fund raiser, he thought the money in that jar was all for him since he has autism and told the cashier it was his money. That’s what people are sounding like here, my own kid, thinking donations should go directly to the family (or kid).

The question is, did anyone have any direct family help prior to Autism Speaks? Cash- wise from that smaller group? I went to classes at the Autism Society, and had a reduced fee but they never gave me services or out right money or therapy, I cant imagine the small group ever having that capability to begin with, prior to AS or there after. It really is about the power of how that donated money is used, and people being able to have a say in it. I’m guessing the smaller group doesn’t much agree with the research.

September 11, 2009 at 2:05 pm
(14) autism says:

There are a few philanthropies that provide help to families, but most of the money is actually intended only for therapies — families have to submit their bills for reimbursement, up to a ceiling of about $500 (not a ton of help).

Re Autism Speaks, though, I can’t feel completely comfortable with one small group of execs representing “autism” to the NIH, the CDC, the UN, the media… disbursing a huge percentage of research funds, etc. It’s really close to a monopoly, and they’re not exactly an “open door” kind of institution.

In short, I think that the potential for making bad use of funds or for steering the entire autism agenda is too great. I’d like to see more openness on the part of AS, and more opportunity for the smaller organizations to be represented in the policymaking process.

Lisa

September 13, 2009 at 4:10 am
(15) Chickie says:

Most ‘philanthropic’ groups are started by people hoping to make a buck while helping out there favorite cause. But usually favorite causes are pets, or a community, or local business, not human beings. That seems to be the founder’s most important thing, making a huge salary helping their favorite cause. I’d love to make 6 figures while helping autism, but I better be darned sure I’m helping autism or I won’t be able to put my head on a pillow at night. BTW, I do everything I do for Autism….FREE!

I’m not a fan of ASA either. Their first response to everything is for its members to make donations. I need money, I don’t have any money to give, and they shouldn’t be asking broke autism families for donations.

September 14, 2009 at 1:21 am
(16) Liz says:

I feel bad for the people who do the walks, thinking that they are actually helping people or their own families by raising money. In these tough times we need to educate people about this and encourage people to help each other rather than to donate to someone else’s paycheck in the name of autism or whatever.

September 14, 2009 at 3:30 am
(17) GrammaKnows says:

It might be shocking if AS actually WAS an advocay group, but it isn’t. Take a closer look at the subcategory in which their 501(c)3 is classified. They are no longer an advocacy organization. Their sole purpose is now to raise money to give to other organizations. One example is the IAN project – a wholesale recruitment of unsuspecting parents who are then approached to have their children included in drug studies – 3 million spent to set up that little scheme. Then there is the Prozac study. Melt-in-the-mouth Prozac – a drug that performs no better than placebo in the intended population, and now, as AS has proven, no better than placebo in off-label use, either.

Philanthropic and advocacy WAS the original purpose, but now that AS is neck deep in the Pharma world, the salaries are less shocking. We all know doctors that push pharmaceuticals are paid handsomely for being part of the whole marketing scheme that is bankrupting the country.

Perhaps the shocking monetary revelations are yet to be uncovered. Who is seeking the information to reveal whether these highly paid personnel are even further compensated by the companies they recruit children for? Anone looking to see what Pharma is sliding under the table?

September 14, 2009 at 1:26 pm
(18) Linda says:

Is “Geri” the Geraldine Dawson from U of W who (at least a few years ago) was convinced that autism was all a matter of genetics, nothing to do with environmental triggers? Do they not know that toxic metals damage DNA? How much time and money are they going to waste?

September 14, 2009 at 1:33 pm
(19) Sandy says:

Everyone was jumping for joy over Autism Speaks when they first started out, up until their daughter was booted. I’m not sure who ever assumed AS was nothing other than researched- based, and along the way they added other area’s like grants. Anyone who donates to any where should look into where their donations are going. You could hand a person on the street some money and hope they don’t use it in drugs or beer however once you hand over that donation, what it’s used for is out of your hands, period. The only thing looked upon is them your gesture of giving.

Regardless if I like Autism Speaks or not, and truly I am not a huge fan of theirs at all or their car accident rate compared to autism ads, they are Big, and one day they may find something Big towards autism. We as parents have to make things happen for us, AS cant. AS may find something in that larger Big picture for prevention and all the more power to them for trying.

September 14, 2009 at 1:45 pm
(20) Sandy says:

There are a number of ways that DNA can become damaged. If you sit in the sun too long the ultraviolet light can damage DNA, so can chemicals. Radiation use in radiotherapy can damage DNA. The largest source of DNA damage is oxygen. So which should Autism Speaks spend money on, any of the above or just vaccines? And one last question, is it because Autism Speaks is so Big that only they are expected to research what certain people want? They certainly can not possibly be the only source for research.

September 15, 2009 at 12:25 am
(21) RimlandFan says:

Autism Speaks are nothing more than a made-over NAAR on steroids. Their mission sounds sooooo good on TV and they have excellent marketing skills- to lure families into ‘walking” for them and raising money. I wish the corporate sponsors would dry up and parents would wake up, because they make me want to throw up.

AS is nothing more than a front for a bunch of pharmceutical reps (remember kids, Peter Bell comes from a high paid job in pharmaceutical industry).

Dawson (an extremely overpaid psychologist) never did the UW any favors- and the UW autism center in itself is a waste of time (they don’t take medicaid, they don’t offer ABA at home- which is the scientific model, they spent 6 million giving first class intensive ABA therapy to infants who don’t even have autuism to make sure they don’t get it- while 14,000 kids in WA state can’t get any ABA due to inaccessible costs, and if you dare use them for an evaluation for your child, they will not stick up for your child at school- they back down and side with the schools, no matter how terrible the educational program is).

Bob and Suzanne Wright have done nothing to advance autism- all they have done is make a whole lot of autism enterpreneurs rich off the backs of families keeling over from the strain of autism. They have run over many smaller autism organizations that were trying to do the right thing. Autism Speaks has stolen the future of hundreds of thousands of families with their super sized organization. They use their influence and money to lobby the lions share of research money, then use their NAAR-headed science directors to hunt for the elusive missing autism gene, and fund studies to see if drugging the crap out of our kids works (nope, not Celexa, nope, not prozac either).

In fact they run their organization must like Pfizer- and have the funds to buy themselves out of trouble (just like Pfizer).

AS has never, ever, ever helped a family in need that I know of- unless of course the family needed a T-shirt- and they only give those out of you can fleece your family for funds to support them!

This is one organization that won’t get a glass of ice water from me or any of the families I know. Stop giving your money to this crappy self serving front group and finance groups and research that count: Generation Rescue, SAFEMINDS, Autism Research Institute, Nationla Autism Assn, or Autism One- these are all worthy organizations helping families pay for treatments, get information to treat their kids, support to keep families together- REAL help.

September 15, 2009 at 12:07 pm
(22) momofavaccineinjuredchild says:

“Autism Speaks” needs to change their name to “Autism Speaks Sucks” – - the accompanying acronym would fit them to a “T”. They are an organization of profiteers and charlatans who are raking it in on the backs of our injured children.

September 15, 2009 at 1:27 pm
(23) Dad Fourkids says:

Autism Speaks is sucking money out of our community for uses that I certainly do not support. If they want to fund strictly research, instead of looking for the impossible (the autism gene) which will only lead to selective culling, they should be conducting research on best practices for serving the autistic people here now, and on supporting efforts to get services in place in those areas where they are either lacking or completely absent.

The fact that so much of the money they have extort- er, raised has gone to the organizations that are directly tied in with the officers of Autism Speaks is in my opinion criminal.

September 16, 2009 at 8:36 am
(24) Sandy says:

How does anyone know that those who donated to AS are not perfectly happy as to what it’s used for? Many who donate to them are not those who have a child with autism anyway. There’s no way one Org is going to be able to set up supports and services when no one can agree on what those should be exactly and even then, it’d be a county/ state issue, not something any one Org that’s national can accomplish.

“who are raking it in on the backs of our injured children.” You may have an injured child, but don’t include my child into that who is not an injured child.

September 17, 2009 at 7:10 am
(25) grassroots mom says:

Autism Speaks was and is a money-generating machine. I had signed our volunteer-sports program up for a walk with AS one year, then learned more about them – how profit-driven they are (the more $ you raise for them, the better, and then the “prizes” you can earn – how about saving the “prizes” for the autistic families that could really use the money and the help for their kids?), how hard they push for money, etc. – except that I also have an autistic child and I have TOLD THEM THIS, and I continue to get their fund-raising requests to “save families from the ravages of autism.” HELLO – WE HAVE AN AUTISTIC CHILD but we don’t consider her a burden or a monster like AS makes her out to be!!! And we have not benefitted one bit from any of AS’s money-making ploys!! I participate in ASA’s activities and the smaller, local programs (such as the ones I volunteer with) that I KNOW where the money is going. But AS can kiss my autistic family’s butt when it comes to getting money from us. We work hard for our money and I can’t get a regular part-time or full-time job with our situation – no way in heck am I giving a dime of our hard-earned dollars to that powerhouse that runs families like ours over for their profits. And I tell everyone about them, too – when they’re looking for an autism organization to support – stay away from rich/wealthy Autism Speaks, go for ASA, or they can support the local grassroots programs I volunteer with, because they’re the real deal and they need help!

September 17, 2009 at 10:05 pm
(26) Aprilwalkswithautism says:

Where to start? I have been a volunteer with AS for 2 years. I have a 5 year old son on the spectrum, so yes this is near and dear to me. Before I read this article, red flags were a flyin’. HOWEVER I’m going to make a few points.

Regardless of whether or not they pay their execs too much (and THEY DO!!!) they still give MILLIONS to autism. Is every penny in the right place? I don’t know the answer to that. In fact, I’m sure every single one of us has a different answer for that. I agree 110% they don’t do enough for the families. HOWEVER NO other organization has done MORE to raise awareness. That’s a good thing. Science research is a good thing. I live in TN and can tell you with 100% certainty that AS gives millions of dollars to Vanderbilt, in fact they were largely responsible for making Vandy an official ATN site.

But the truth is, I have been long frustrated with the lack of “real” family support. What I’ve witnessed first hand is that the winds of change are blowing through AS. There are several people currently employed by AS that are NOT standing for this BS and are raising their voice. THIS is a good thing.

I could go on all night but will say, I remember years ago the United Way went through a very similar thing. It seems like after the whistle was blown, they cleaned up their act and continue to do a lot of good work. I can only pray the same happens within AS.

Autism Speaks DOES do good work. Do they do enough? Can ANY of us do enough? Are they right? Are they wrong? I don’t know. Is there ANY organization out there that is perfect? That runs their company exactly how each and every one of us wishes they would? Doubtful.

Again, what I can say after 2 years of chairing the walk is that……… the reason *I* do it is because that day, that one day is so important to the families, to walk along side one another and say, “I am not in this alone.”

At the end of the day, “You take the good, you take the bad, you take them both and there you have, the facts of life.”

And for the record, I will not have ANYTHING to do with AS after this walk is over. I made that decision months ago, long before I read this article. Glean from that what you will. ;) I think I’ll continue to put my time and my money where it matters the most ~ in my own family.

September 23, 2009 at 11:44 pm
(27) Aprilwalkswithautism says:

I invite you to read my blog (click my name above). I spoke directly to the CFO of Autism Speaks today and got the real scoop. Well, some of it anyway =)

September 28, 2009 at 1:54 pm
(28) Maywalkswithout says:

April, you forget, raising totally distorted and misinformed awareness about Autism is far worse than nothing at all.

December 4, 2009 at 8:04 pm
(29) snow says:

Is this yet another AIG issue? People who make loads of $$ off the backs of people who either have kids with knows of someone with this dreaded diagnosis. Say what you will my son has ASD/NOS/PDD A lot of diagnosis with little known cure. Only therapies at this time which insurance companies give a lot of flack about paying for. Medicaid only pays for 1 hour for each therapy needed. Vaccinations probably caused my son’s febrile seizures @ 10 months. Regardless of that, I am left to do the best that I can to help my son through all channels. For corporations and agencies to take advantage of an illness for the sole purpose of financial gain for themselves is just plain unethical and should be punished and made to pay back or not be allowed to profit off of the backs of hard working parents to support the ongoing research for a possible cure. SHAME ON YOU FOLKS FOR TAKING ADVANTAGE OF THE PUBLIC> GOD SEES YOU AND YOU’LL BE PUNISHED FOR SUCH OUTLANDISH BEHAVIOR> don’t you have any remorse for what you’ve done? How do you justify the huge incomes in all good conscious, how do you sleep at nite.

December 23, 2009 at 12:10 pm
(30) autistic mother says:

Autism Speaks started this year with 20 million cash in the bank, it now has roughly 4 million. The burn rate is higher than the revenue brought in and they are spending projected earnings that a unrealistic and don’t have yet. At this rate the organization will not likely make it another year. I have also heard rumor that they have taken out some loans to stay afloat yet are still looking to do pay raises for their employees in 2010. You may say this is not fact and you are right it may not be. I’ve privileged to this information via one of their employees whom I am close to.

March 5, 2010 at 8:49 pm
(31) GW says:

Autism Speaks appears to award grants to some University programs with MRI schemes as the center of their research, directed by researchers who may not be considered as leaders in their field.

A.S. may want to thoroughly investigate CV’s before throwing precious money away.

NC

October 5, 2010 at 11:47 pm
(32) Parent too says:

Well I read non profit tax returns. I want to know where my donations go and my volunteer hours. A great resource is http://www.guidestar.org. Especially where I tell family and friends to help in honor of my son working so hard & living with autism. He’s my hero. 
The problem I have with Autism Speaks is folks raise money for them thinking they are helping families. Autism Speaks is raising funds for research not much for families today. Fact- see their tax return. 
While you can discuss percentages – which AS %’s are below BBB standards- they are research focused. 
We need both – Help for families AND research. The question is for donors – which do you support? And please do your research so time and money follow your intentions. 
Whether we like it or not autism is a business. But the public can help shape non profits by getting involved and help engage your resources. You are stronger than you think – only when you act for positive change. 

October 5, 2010 at 11:48 pm
(33) Dad says:

Well I read non profit tax returns. I want to know where my donations go and my volunteer hours. A great resource is http://www.guidestar.org. Especially where I tell family and friends to help in honor of my son working so hard & living with autism. He’s my hero. 
The problem I have with Autism Speaks is folks raise money for them thinking they are helping families. Autism Speaks is raising funds for research not much for families today. Fact- see their tax return. 
While you can discuss percentages – which AS %’s are below BBB standards- they are research focused. 
We need both – Help for families AND research. The question is for donors – which do you support? And please do your research so time and money follow your intentions. 
Whether we like it or not autism is a business. But the public can help shape non profits by getting involved and help engage your resources. You are stronger than you think – only when you act for positive change. 

October 6, 2010 at 12:03 am
(34) another parent says:

Well I read non profit tax returns. I want to know where my donations go and my volunteer hours. A great resource is http://www.guidestar.org. Especially where I tell family and friends to help in honor of my son working so hard & living with autism. He’s my hero.
The problem I have with Autism Speaks is folks raise money for them thinking they are helping families. Autism Speaks is raising funds for research not much for families today. Fact- see their tax return.
While you can discuss percentages – which AS %’s are below BBB standards- they are research focused.
We need both – Help for families AND research. The question is for donors – which do you support? And please do your research so time and money follow your intentions.
Whether we like it or not autism is a business. But the public can help shape non profits by getting involved and help engage your resources. You are stronger than you think – only when you act for positive change.

October 6, 2010 at 12:04 am
(35) another parent says:

Well I read tax returns. I want to know where my donations go and my volunteer hours. I use Guidestar for info. Especially where I tell family and friends to help in honor of my son working so hard & living with autism. He’s my hero.
The problem I have with Autism Speaks is folks raise money for them thinking they are helping families. Autism Speaks is raising funds for research not much for families today. Fact- see their tax return.
While you can discuss percentages – which AS %’s are below BBB standards- they are research focused.
We need both – Help for families AND research. The question is for donors – which do you support? And please do your research so time and money follow your intentions.
Whether we like it or not autism is a business. But the public can help shape non profits by getting involved and help engage your resources. You are stronger than you think – only when you act for positive change.

October 6, 2010 at 12:08 am
(36) another parent says:

Well I read tax returns. I want to know where my donations go and my volunteer hours. Especially where I tell family and friends to help in honor of my son.
The prob I have with AS is folks raise money for them thinking they are helping families. AS is raising funds for research not much for families today.
While you can discuss %’s- which AS %’s are below BBB standards- they are research focused.
We need both – Help for families AND research. The question is for donors – which do you support?
Whether we like it or not autism is a business. The public can help shape non profits by getting involved and help engage your resources. You are stronger than you think. Only when you act for positive change.

October 6, 2010 at 12:09 am
(37) a dad says:

I have tried to post comments four times. Trying a test

October 6, 2010 at 12:14 am
(38) dad says:

Well I read non profit tax returns. I want to know where my donations go and my volunteer hours. A great resource is http://www.guidestar.org. Especially where I tell family and friends to help in honor of my son working so hard & living with autism. He’s my hero.
The problem I have with Autism Speaks is folks raise money for them thinking they are helping families. Autism Speaks is raising funds for research not much for families today. Fact- see their tax return.
While you can discuss percentages – which AS %’s are below BBB standards- they are research focused.
We need both – Help for families AND research. The question is for donors – which do you support? And please do your research so time and money follow your intentions.
Whether we like it or not autism is a business. But the public can help shape non profits by getting involved and help engage your resources. You are stronger than you think – only when you act for positive change.

October 6, 2010 at 7:45 am
(39) Robert says:

The author is not revealing all that the 990 tax form shows:

1) Geri Dawson does not earn $665K yearly. She earned a wage of 330K or so which is not unusual with someone of her skill. There was a one-time relocation payment of close to 300K. This is not unusual when you recruit and relocate people of major talent across the country.
2) The 65K was granted to individuals. About $30M was granted to organizations.

October 6, 2010 at 8:12 am
(40) lisa says:

they spent to lavishly, spend money on stuff not needed and dont give back to the communities they get money from as much as they should. our local autism center does more for us then they do. people walk for them and their money walks right out their city and state and right into autism speaks pockets to lavishly spend money on corporate stuff that is not needed. I say the next time autism speaks asks you to walk for them you need to tell them to walk right out of your city and state.

October 6, 2010 at 9:12 am
(41) jenniferpolak says:

Next year, when AS strolls into town for it’s annual walk, I would like to ask people to run in the opposite direction. Every year they waltz into communities and leave with a substantial amount of money that needs to stay right where it is. They do not collaborate with any local agancies. They do nothing to support programs and services to people affected by ASD. They may be the largest autism organization in the US, but none is more divisive and controversial. There are a number of reasons why we should ask Autism Speaks to just shut up.
ASis listed with an Unfavorable Accountability Rating for Charities standing with The Better Business Bureau. Their 2009 IRS tax return shows that they raised 49 million dollars. Of that total, nearly 17 million dollars went to corporate salaries and payroll expenses, accounting for 35% of their yearly budget. Many of thier employes make six-figure salaries. In contrast, only 11.7 million was used for program grants and services. That accounts for only 24% of their yearly budget. Of that amount, only 450,000 dollars was allocated to family programs, supports and services. That’s only 1% of thier yearly budget actually touching the life of people who are living with autism. Other expenses include: Advertising $2,000,000. Rent $1,586,000. Corporate events and confernces, $2,300,000. Travel, meals, and lodging, $1,000,000. Catering, $636,000 (which happens to be $186,000 more than they spend on actual families affected by autism.) To show a contrast, The Susan J Komen Foundation for Breast Cancer is an organization that, like AS, raises money primarily for research and awareness efforts. In the same year they raised $346mil. A full 267mil, or a more reasonable 77%, went to programs and services. Autism Speaks to put it bluntly, raises money for fancy NY City offices, huge six-figure corporate salaries, and lavish parites.
It get’s worse from there………..

October 6, 2010 at 1:19 pm
(42) amom says:

Yes, I believe they are not spending money as they should.

I do not support them. They do not represent our family. I am a mother of a child with autism.

When I give money to an organization, I do so with the intent that it help someone not so someone can draw a six figure salary.
I feel they misrepresent their intent when they ask our families to walk, donate and raise money. If my family member walks for them or donates, they are thinking of my child but Geri Dawson’s bank account balance is not going to help any of these kids. In short, I think they rob the community of people they are supposed to represent and it is nothing but a cash cow to them.

Actions speak louder then words and their actions speak as to their intent. I prefer to give my money to TACA NOW.

They actually help families and don’t take the lion’s share of donations to line their pockets. They also do not solicit families of children who are struggling financially to pay for therapies out of pocket to donate, something Autism Speaks does.

October 6, 2010 at 1:19 pm
(43) Frank A Smith, DC says:

Absolutely not…. I say this since I am convinced their “mission” is simply a front for the allopathic/pharmaceutical agenda and to allay fears that toxic insult is a/the major factor in the development of Autism… Their $$$ efforts are well spent for that very reason… Caveat Emptor…

DrFAS

October 6, 2010 at 1:32 pm
(44) Frank A Smith, DC says:

YES…. In my humble opinion Autism Speaks is nothing more than a media front for the allopathic/pharmaceutical industry and their agenda to dissuade those who are convinced that Autism is a direct result of toxic insult from vaccinations.. Therefor their $$ is well spent..

Caveat Emptor

DrFAS

October 7, 2010 at 1:46 am
(45) Rhonda Spellman says:

What a shame for a high profile organization to take advantage of those who so desperately need truth and understanding.

There are some truly wonderful people generously donating their time, efforts and money to Autism Speaks – all in the name of helping children (or so I thought). I was one of them… until I learned that there was little to no chance that any child benefited from my actions.

Take a close look at Autism Today if you want to help a group who is truly dedicated to helping those who need it! I have been known Karen Simmons (the founder and CEO of Autism Today) her sister Susan (in charge of running the website and much of the outreach) and John Brewer (the president of the KEEN Education Foundation – an outreach from Autism Today) for over a year now. Their wings and halos are shining brightly – like the faces of those who they help on a regular basis!

We ALL can make a difference in the life of another… with a little effort it can become a positive difference – especially with organizations like Autism Today!

October 31, 2010 at 6:17 pm
(46) Jessica says:

Autism $peaks fails the BBB’s charity accountability standards. http://www.bbb.org/charity-reviews/national/human-services/autism-speaks-in-new-york-ny-1456

October 31, 2010 at 6:17 pm
(47) Jessica says:

Autism $peaks fails the BBB’s charity accountability standards.

January 25, 2011 at 3:07 pm
(48) Kathy says:

Autism Speaks is filled with a group of egotistical, self serving people who do little or nothing to help families struggling with raising autistic children. I was involved with this organization for two years and co-chaired the walk in my city one year. It was shocking and heartbreaking to learn that there only concern is to make money to pay for their salaries and bonuses and to promote themselves.

Much of the money earned in our community also goes to pay their Public Relations person. How pathetic!

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