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

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.

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.

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.

“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).

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

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.

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!

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.

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

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.

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.

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?

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?

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.

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.

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.

“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.

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.

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.

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!

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.

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 =)

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

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.