June 7, 2007

I Take Back Every Nice Thing I Have Ever Said About Autism Speaks

I read this today and it just made me sick. I don't even have the words to comment on it.


I am a professional that has reviewed many non profit organization's IRS Form 990s. Autism Speaks Form 990 raises serious red flags. Serious. This is all from the official filing for 2006.

1. Three members of the Board of Directors received $2.5 million for their own organizations.

2. The President Mark Roithmayr, just received a 5 year contract for about $2,000,000 including bonuses with no prior background with autism.

3. The grants are primarily going to those representing institutions that are reviewing the grants. There is no indication that these conflicts are independently reviewed

4. The location of this small and new foundation is in very expensive downtown New York facilities (2 Park Avenue) rented for $200,000 by the institution that is run by the Chairman of Autism Speaks.

5. A expense of a Private Jet plane for $57,000 was noted. This is very unusual for a new non profit groups.

6. The head of the scientific review received the majority of the funds for 2005 for his institution for a data base - almost $3 million

Since the funding is now from the public - and the advertising and promotion tugs at the publics heart strings with images of families in need - the funds collected MUST be about those it raises the money for.

The following are all taken from the Form 990 filing

Web Site $830,000
Software for the computer $514,000
Lawyers $440,000
Computers $337,000
Public relations $285,000
Office annual rent $200,000
HR consultant $110,000
Editorial Consultant $76,000
Private Jet Plane for someone that entertained $57,000


Mark Roithmayr* $360,000
Peter Bell [$240,000?]
Alison Singer $168,000
Mr Ringall $150,000
Andy Shik $110,000

Remember all the above also gets significant fringe benefits that
probably add.

Mark Roithmayr also can get $50,000 more with a bonus a year benefits


Here is the AS 2005 990. Here is the 2006 990.

Further discussions on AS allocation of funds, choices and ethics can be found here, here and here.

Read all post on Autism Speaks here.


24 comments:

Anonymous said...

Why is this organization paying a complete moron $168k? What does Alison Singer possibly bring to the table? Sorry, I need to go vomit.

Bec said...

I found your blog today while looking for further information on Autism Speaks. I was thinking that the rift between the Wrights wasn't as deep as the AS release made it sound, but I am starting to think it is like watching a train wreck! I do find myself wondering about those expenses. I can see a lot better uses of money than a private plane, though I suppose many charities do stuff like that.

Anyway, as a fellow mom of an autistic child in Maine, I wanted to say thank you for your blog. It is very interesting reading. You have compiled a lot of information here and I appreciate it!

Ginger said...

Nice to meet you Bec!

The problem is that most autism organizations don't do stuff like hire planes. Many of the people running the organizations don't even draw a salary!

Instead they are doing it all on their free time, which ain't much for an autism parent.

David N. Andrews MEd (Distinction) said...

Can anybody spell "fucking greedy shits"?

culvercitycynic said...

Interesting, but really why is anyone surprised by this kind of greed and crassness coming from a nouveau-riche couple who haughtily huffed, regarding their personal situation with their grandson, that "autism came knocking on the wrong door."

As if they can they can even be counted on to show any class. Af if!

David N. Andrews MEd (Distinction) said...

"As if they can they can even be counted on to show any class. As if!"

Nah.

They wouldn't know class if it shot up their winnet-ridden arseholes.

Anonymous said...

Ginger, from where did you find this information?
andrea

Ginger said...

Andrea,

It was posted on the EOH list by an anon writer with the moniker "autism insider". I have written to him requesting his real name. Have not heard back yet.

But..

The 990's are public information so easily confirmable.

I was actually looking for a link online and got distracted. I will look tonight.

abfh said...

The information is on the Autism Speaks website:

autismspeaks.org/annual_report.php

Ginger said...

Thanks!

nhokkanen said...

Parents I know can't afford the state fees to get autism services for their kids, like OT or speech or ABA. Those who do get state help often aren't compensated for special diets -- buying specialized food their child can eat without getting sick.

Getting medical tests often means selling possessions... if any nonessentials are left. Don't even think about trying to afford adaptive play equipment, or travel to autism conferences.

My ethics and sense of thrift feel violated when a giant blood-sucking corporatized group deceives donors and sucks funds away from autism advocate groups that actually help kids.

Next week at the Mall of America is a hot-dog eating contest to benefit Autism Spends... the glorified gluttony is quite symbolic.

Anonymous said...

I just sent this to Drudge and SmokingGun. It really needs to be public so they can be held accountable for the outrageous sums they pay themselves and others.

They will never get another dime from me.

Anonymous said...

Maybe now the Wright's and their arrogant attitudes will just go away----and I hope they take Alison Singer with them. These people are repulsive.

Ginger said...

Well this story needs someone like Drudge to look into it properly.

At this point I have been talking to more people and there is more information on their misbehavior and conflicts of interest than I can even sort out much less do justice to.

I would be happy to hand all of it off to a good investigative journalist who does not have to chase an autistic five year old around the house in between posts.

andrea said...

This whole fundraising thing reminded me of an unsavoury parallel:
http://qw88nb88.wordpress.com/2007/06/10/greed-speaks-fundraising-for-nonprofits-megachurch-style/

Ginger said...

Andrea,

You are reading my mind sister.

We left LA to get away from the unsavory mega church we were attending. They raised millions to build buildings to “Making LA the Greatest City for Christ In America®” , but violated the rights of several disabled and at risk kids at their school behind closed doors.

Problem for ALL these guys is that Jesus can see through doors and is not happy. He gets the most angry with guys who wear white hats and secretly do black things.

http://adventuresinautism.blogspot.com/2007/05/autism-in-gods-economy-those-in-power.html

domesticgoddess said...

Ginger & All,

I was furious when I heard this. I shared the info with my mom, who helped organize the Iowa walk last year. We were the top fundraising team for the state.
She personally got in touch with Mark Roithmayr (Autism Speak's well-paid president) in the last week and has spoken with him and, perhaps more importantly, the CFO.
You would be very surprised to hear how much sense they make when talking about the finances. Just to give you one example... the private jet was a rider on Natalie Cole's contract, who performed at a fundraiser in Las Vegas that raised over a million dollars for them.
My mom is going to type up the other answers she received from them, and I think you might want to reconsider once you have the whole story,
Would you please let me know which Yahoo! list you posted your link on (I am on 4 and forgot which one I found you on)? I'd like to pass along the information there as well.

Ingrid
Mom to Nate the Great

Anonymous said...

Hey, could someone please spell Mark Rothmeyer differently from Mark Rothmayer. Since the president of Autism Speaks is spelled Rothmeyer, and not Rothmayer. Thank you, I would appreciate it. Oh, and I have no idea what Autism Speaks is, but it sounds very unethical, to say the least, what is going on.

-M.R.

Anna said...

OK. So someone posted me a link to your blog just as I was about to leave for the kickoff dinner for our local Autism Speaks walk. Was I sickened by what I read? Yes, wholeheartedly. Is it good to ask questions and take nothing at face value? There is no other American way. Am I still supporting Autism Speaks? You bet. Here’s why:

What other national Autism fundraiser has nationally distributed PSA’s informing and advocating for autistic children?

What other national Autism fundraiser has contributed to mass media exposure about our cause like hour-long shows on Oprah and Larry King?

What other national Autism fundraiser has the political clout to help support and pass federal and state legislation like the EPIAA and the Combating Autism Act?

What other national Autism fundraiser has sponsored research since 1997, and recently awarded over $15 million in grants to research groups from South Korea and Finland to Harvard, Yale, and UNC?

So I still support the efforts of this group because to not do so would be shooting off my nose to spite my face. I’m also mad as hell insurance companies don’t pay for my son’s therapies, but that doesn’t mean he goes without them. I hate that professional baseball players make as money as they do, but I still go to a game or two every summer. I choose to think that my federal tax dollars are going towards public health initiatives and schools, and not to George W’s many vacations or Scooter Libby’s defense fund, but I still pay my taxes. It’s called free will. And it’s called the greater good.

I think we need to encourage the leadership of Autism Speaks to examine their fiscal policies in regards to the exorbitant salaries, and other “unnecessaries”. But they are doing too much good to stomp your feet and say, “That’s not fair!”

MDR said...

Dear Bloggers,

I had posted a previous comment upon Autism speaks, and I would like to address that comment more in depth. I was rather upset about the serious ethical implications being raised in the discussion and the misspelling of the name of the person associated with this organization. From personal experience it is very difficult whenever one experiences a family member or loved one afflicted with a serious condition. This raises many issues and emotions for us all, and I can understand how a situation like this can affect us, and how upset we may become.

I am unfamiliar about this case or organization to be able to contribute to the discussion in a meaningful way, and therefore my previous comments were in reality my first impressions. I do hope though with all sincerity that those whom have found issue with this organization being discussed can address their concerns justly and with equanimity in order to find peace of mind and address any ethical dilemmas that may be present. Furthermore, it is also my sincere wish that this organization hopefully does some good for our world, and if it does that it may continue.

Wishing all of you the best.

Best Regards,
-MDR

faceofautism said...

Nobody "Speaks" For Me and My Family

Support LOCAL Autism Organizations.

http://faceofautism-facesofautism.blogspot.com/

See my favorite t-shirt on my blog.

"Nobody Speaks For Me and My Family. Support Local Autism Organizations."

Also, did you read about the kid that they are suing for his t-shirt?

faceofautism said...

I was approached and asked to speak to the transportation departments of two large districts in the Kansas City area. I have a child with autism that has ridden public school buses. Who would know the issues better than me?

Two individuals that have children that go to private schools put an end to it. Why? They didn't want a housewife to represent autism. They
wanted a professional. They were embarassed to be represented by me. I have an IQ of 130 and I live in an affluent part of Kansas City. My husband is not a doctor and I didn't go to college. Instead I chose to stay at home and raise my children.

These same two individuals want to do away with the local support
groups. They want Autism Speaks to take over our support groups. They
don't want moms running support groups out of their kitchens. Their
words, not mine.

I don't need Autism Speaks to speak for me. I have a voice and it is loud and strong. When was the last time that Autism Speaks had monthly meetings to support families who's children were not getting the services that they so need? When was the last time that Autism Speaks went to an IEP meeting with a mom because she couldn't quit crying long
enough to talk? When was the last time Autism Speaks met with CPS
because they had been called on a parent that wouldn't play the game? I have done all of these things.

Autism Speaks doesn't live my life and doesn't offer the services that our families really need.

Mind you, these same two individuals go around the states of Kansas and Missouri speaking their minds and telling everyone that their way is the right way. I simply tell my support group what IDEA is and how to fight for their kids.

I am not trying to make myself stronger. I am trying to make my child stronger in the only way that I know how and I don't appreciate those that don't have my issues trying to keep me from doing what is right.

faceofautism said...

Posted on Saturday, June 21 @ 09:30:14 EDT by


After the negative publicity Autism Speaks received for threatening to sue a 14 year old autistic girl for her perfectly legal parody website, you would think that the organization learned their lesson. Unfortunately, they're at it again, this time threatening an autistic blogger's t-shirt company with legal action for a shirt that read "'Autism Speaks' can go away. I have Autism. I can speak for myself." The organization claimed the t-shirt was a violation of copyright, despite the fact that such a t-shirt is protected as free speech.

Autism Speaks, which claims to speak for autism, has no autistic employees or board members with autism and is viewed as a bully by many autistic individuals who feel that the organization engages in tactics that marginalize their voices and contribute to an environment that hurts the lives of those with Autism. Their most recent move certainly supports such an argument.

Read on for the details and links.

AspieWeb is run by an autistic individual named Zach, who posted about the incident on his site. Zach has designed a variety of humorous and more serious t-shirts for people with autism. He is one of the countless autistic individuals who feel that Autism Speaks does more harm than good so his t-shirts voice sentiments shared by a large community.

Zach received the following notice from his t-shirt company:


Dear Zach,



Thank you for your email.



Thank you for your interest in Zazzle.com, and thank you for publishing products on Zazzle. Unfortunately, we have been contacted by Autism Speaks Inc. and it was requested that these products be removed from Zazzle.com. At the risk of legal action taken against Zazzle and yourself as a contributor of these products, it was decided that it was in the best interest of both parties to have the products removed from the Zazzle Marketplace.



Thanks for using Zazzle!



Best Regards,

Marcos

Content Management Team

Zazzle.com, Inc.

Ray Gallup said...

I have seen this from Autism Speaks for many years and they would not fund any viral-autoimmunity research nor help fund Dr. Vijendra Singh in regard to this research either. The net result is what has happened to our family and will happen to others too..........

Parsippany family's struggle with autism a common challenge

http://www.dailyrecord.com/apps/pbcs.dll/article?AID=2009311160003

A nice family trip turned into a violent nightmare when Ray and Helen Gallup of Parsippany took their son Eric out for a train ride last month.
Eric, 24, has autism and lives in a Delaware center for people with behavior problems. He is 6-foot-2 and weighs about 210 pounds. During the ride, he began banging his head into his mother's, tore out a clump of her hair and bit his father's arm and thumb. The thumb needed seven stitches and the thumbnail was torn off.


"Here was my own son and he had clamped down on my thumb," said Ray Gallup, a Lake Hiawatha resident who has been an autism activist for nearly two decades. "It felt like he was going to keep crunching down on my finger until it came
off."
................