Thursday, April 8, 2010

ASAN board member's strange take on autism speaks

I have been reading this gem from Sarah Pripas, ASAN board member, leader of ASAN's UCLA chapter and neurodiversity activist. One of the talking points that got my attention was:

In the public policy arena, pro-neurodiversity organizations are, with our limited budgets, doing our best to improve disability policy. Here I feel compelled to speak about Autism Speaks, an organization which is worth tens of billions of dollars, yet has done comparatively little to address the practical needs of autistic people.

A billion dollars seems like an unfathomable amount of money to me for a charitable organization to have let alone tens of billions of dollars. I realize that Bill Gates and Warren Buffet have this much cash on hand. I realize there might be some huge corporations that have this kind of money, but not very many I would think. Of course, I realize this is a drop in the bucket for what the federal government spends every year, on defense, entitlement programs, government employee's salaries, etc. But it did seem farfetched to me that autism speaks could conceivably have this kind of dough.

In order to factcheck Ms. Pripas' assertion, I came across this webpage from the better business bureau which discusses the actual assets of AS as of the end of 2008. It would seem to contradict Ms. Pripas' bold statement. I will paste the figures from this webpage.

For the year ended December 31, 2008, AS's program expenses were:

Awareness and other services
Total Program Expenses:
$55,950,417 Back To Top

Chief Executive : Mark Roithmayr, President
Highest Paid Executive: Geri Dawson, Chief Science OfficerCompensation*: $669,751


The following information is based on AS's audited financial statements (consolidated) for the year ended December 31, 2008:

Walk program and retail partners
Major gifts and other contributions
Special and community events
Government grants
Interest income
-->Total Income

Total income


Program expenses

Fund raising expenses

Administrative expenses

Total expenses

Expenses in Excess of Income

Beginning net assets

Ending net assets

Total liabilities

Total assets


We see that in the year 2008 autism speaks earned a bit over 70 million and spent nearly 75 million incurring more liabilities than assets in that year.

We see that at the end of 2008 they had nearly 30 million in assets against just under 20 million dollars in liabilities.

as of December 2008, their net assets were less than 10 million dollars.

Certainly a far cry from Pripas' tens of billions of dollars. Where Ms. Pripas obtains her figures I have not one iota. Ms. Pripas also neglects to take into account that her neurodiversity movement conned autism speaks into giving Laurent Mottron a grant that is worth approximately 5% of what were autism speaks' net assets as of about a year ago. Of course AS may have become more healthy in the past year financially, but that seems implausible. Certainly that they were ever worth tens of billions of dollars is a huge stretch to say the least.

Anyone who read this post can correct me in the comments section if I am mistaken but I believe Ms. Pripas is at least on the board of ASAN as well as the leader of their UCLA chapter. Though somewhat lower than Ari Ne'eman in stature, I think she does have a high executive position in the organization.

Yet, this organization who has on its board of directors a person who would make such a gross misstatement of fact, certainly reflects on Ne'eman himself. So perhaps the U.S. Senate could look at this and see just who Obama is proposing to the NDC. Someone who has an axe to grind against an organization that is admittedly far from perfect, yet does have as its goal the curation of autism and wanting to help persons on the spectrum lead better lives until a cure is available. Though I have bones of contention with their funding of Mottron, the autism in the workplace dog and pony show and other issues, they are certainly funding some scientific research that at some point will hopefully help handicapped persons with this condition better function in the world.

So far, ASAN had produced nothing of importance. Also, should an organization that would make such a huge clusterfuck in presenting their 'facts' be in control of disability policy in Washington? I think not.


Kate said...

I think it's more likely that she meant 'tens of millions' but said 'tens of billions' accidentally. It's the kind of mistake that I make often. Unlike a lot of people with Asperger's Syndrome, I don't have much concept of number - I struggle to read and understand big figures, and I wouldn't have known that that figure said 'seventy million' if you hadn't spelled it out.

Then again, I struggle with the smaller numbers as well. It makes grocery shopping interesting...

farmwifetwo said...

If ASAN wants to get funding they have to listen to the parents and stop viewing them as the enemy. Why would I give money to an organization that thinks I know nothing about autism and am a horrible, uncaring parent. That my youngest son isn't entitled to "normal"... that they think it's ok that he's left in a group home and without a voice to contradict their "autism is wonderful" message. Sorry, autistics on welfare just aren't going to have money to give them.

Then what made them think the "geeks" (Temple Grandin's word), the one's with real jobs, lives, families... were going to suddenly embrace their "autismness" and come on board and give them donations... They aren't. Instead they are living their lives the way they want to... why would they ever want to live them... "cured" and "normal".

Stephanie said...

I've always agreed with farmwifetwo on this: if ASAN wants more money, since they complain that if they only had more money, like Autism Speaks, than they could actually get stuff done, than perhaps they should figure out why no one supports them on the level like Autism Speaks does.

"If only we had money like Autism Speaks!"

Well, why don't you?

Perhaps there is something in your message and/or organization that most people just can't agree with. Thousands show up for Autism Speaks but less than 20 for ASAN.

Why is that?

You can't tell me it's because of advertising: Ari Ne'man and other ASAN members have had plenty of time in the spotlight.

I know Bob Wright is quite wealthy and has "connections," more so than Ari Ne'man. But Ari has wealth and plenty of connections as well, even in Washington.

Autism Speaks had to start somewhere, too: at one point they were absolutely nothing but grew into a very profitable organization.

Well, how did that happen?

Maybe someone over at ASAN should figure that out.

Ender said...

I think the whole funding thing might be about to change. AS got rich by having initial sources with a good deal of money desperate for a cure leading to others donating money, etc.. Now ND, though maybe not ASAN (though they are the main ones so far), is starting to get more money through sources like the Dan Marino foundation and is just starting to advertise in the same way AS has been for years (my hometown has about 3 AS billboards and regular commercials, they don't do that all to raise awareness).

With other sourcs like Stephen Stills and Curt Schilling waiting in the wings... it might not be long before they rival each other, it will just depend on what side the general public sides with (which is really anyones guess, probably a bit of both).

Personally I think there needs to be a side that takes both farmwifetwo's opinion, and that of Ari's. Nobody is seeking that and that is just wrong to me. You have the John Best's of the world totally hating and ignoring any differing opinions and can't believe some autistics might not want a cur. You have AS that is just now bothering to hire a token autistic to give them some legemacy but we all know they don't care what autistics think. Then you have Ari (who as much as I like him and think he should get his new post) totally ignores the people that want/need a cure.

NOTHING can get achieved like this. Before I go on I have no clue if there is a real answer. No clue whatsoever. Any "cure" would have to be given when one is a kid most likely. That makes it hard to let the autistic decide. In some severe cases I still don't mind, but I think it generally should be the autistics choice, not his parents, whenever the choice is possible.

But we need some discussion, and hopefully a new organization that comes togther somewhere in the middle... though I am not sure if that is entirely possible in todays climate.

Anonymous said...

I agree with Ender. I don't see how being selfish and refusing to even see another's point of view is conducive to ANY solution. Being selfish does not make anyone truly happy, and will never get anything of any real consequence finished. I sincerely hope I do not have to spell out the MANY instances of this.

If autism is an illness for some, then let them vie for a cure. If it is simply a different way of existing, then let the people who feel that way live that way.

The reason groups like ASAN exist is simple: groups like Austism Speaks want to eradicate the existence of autism entirely, and not everyone is all for being wiped off the planet simply for being different from the majority.

If Autism Speaks was not so into spreading fear and hatred, ASAN wouldn't need to exist. I say it this way because ASAN was created BECAUSE of Autism Speaks extreme claims.

People should be allowed to be who they are, and if someone else doesn't like it- they have NO right to treat another person as less than human.

If someone wants to change to fit in, let them. Society as a whole hates anything different, so why bother fighting it?

If someone wants to learn how to accept themselves for who they are and get others to do the same, let them. After all, it only ended slavery, aids gender quality, soon we will have marriage equality for all genders, and will even stop forcing genital surgery on intersexed babies.