Autism Speaks is easily one of the biggest and loudest voices talking about autism. However, it is also one of the most despised among autistic adults. There are various reasons, many of which involve where their money goes, the stances they take regarding issues that are important to autistic people, their outright refusal to have autistic adults on their board of directors (autistic people do not even have a token presence in Autism Speaks's leadership), their continual use of pity advertising, their unreproducable facts and figures, and their insistence that autism is universally tragic and that autistic people should not exist (their insistence on "curing" autism, which can only be done if a prenatal test is designed to facilitate the decision of whether or not to abort the fetus). Luckily, there are other organizations that are more favorable to the autistic community, though that's for another article.
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! Shockingly, she makes more than the five people listed in the form as "highest compensated employees", who are listed as being compensated less than $150,000 each by Autism Speaks. Where's the rest of that money that they didn't report, and how much is it to make them more highly compensated than someone getting almost $650,000 from a non-profit organization? All of the "highest compensated employees" are in some sort of administrative or "relations" position, meaning that they're part of the Autism Speaks bureaucracy and overhead, except for one who is listed as "Senior Policy Advisor and Counsel", which could mean that he's part of their oversized legal department, known for threatening people who make t-shirts or parodies to express their displeasure with Autism Speaks (false allegations of copyright violation were the bulk of those cases). Not including federated fundraising money, Autism Speaks spent over $1.7 million on fundraiser expenses, and made only $142,693 from that investment (that's the net gain, or what's left after that $1.7 million+ is subtracted from the total monies gained from the fundraisers). 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, and I haven't even shown all the reputation-damaging financial information I have on them from their 990.
Another huge reason why autistics hate Autism Speaks is their film "Autism Every Day", in which they film their then-Executive Vice President, Alison Tepper Singer, saying that when her daughter was first diagnosed, she seriously contemplated driving her car, with her autistic daughter inside, off a bridge. Her only reason for not acting on this, according to her own statements, was that she had a neurotypical daughter waiting for her at home who needed her. By her own admission, apparently, she would have preferred to murder her own child than to have an autistic child. There are parents who actually HAVE murdered their children and claimed that it was a mercy killing because said child was autistic. For more information on the minimal sentencing many of these killers got, see thiswayoflife.org/murder.html. Those are all autistic people who were killed/murdered as a direct result of the fact that they were autistic. Statements like those in "Autism Every Day" glorify and seem to excuse these horrific actions, lending justification to a parent murdering a child for having a disability. This was originally designed as a form of pity advertising, but has become a destructive influence in autism politics since its release. On a side note, if one looks at the page I linked to, one would find quite a few murder/suicides, which may be in part inspired by Ms. Singer's remarks.
There are many more reasons why Autism Speaks is harmful to autistics, and why autistics continue to insist that Autism Speaks does not speak for them. However, it would take too long to disclose them all in a single article, so I limited it to the top two. Since Autism Speaks is headquartered in New York (in a Park Ave. high-rise, no less), I do hope that they'll read this and respond. After all, you keep saying that you're listening. Try listening to autistic people who are telling you to go away, for once.
Comments
Very well-written article. Nice synopsis of why we autistics despise Autism Speaks. We can speak for ourselves, and don't need them to do it for us, badly.
I was going to include more, but it would take too much space to write it all. Maybe I'll do a part 2...
Wonderful article, Marc. We've been trying to get these points across and you summed it up quite nicely!
"However, it is also one of the most despised among autistic adults."
It is one thing to assert that you think this is the case but quite another for it to be reality. I assume that you have some reference to back up such a bold statement such as a survey of adults with autism or perhaps a study.
So please provide your source for this claim.
Bingo! Looking for part 2. You MUST have a part 2.
NO Excuses accepted
I help autistic people enjoy life a bit more with my store - and I don't even earn a salary! This is horrible. And now ASA is competing with me by opening a toy store, too! So much for "non-profit"
OZMO Mom, ASA is the Autism Society of America, not Autism Speaks, in case you were confused.
MJ, a brief survey of the autistic blogosphere should find the information that you need. Failing that, simply do a Google search for the phrase "Autism Speaks doesn't speak for us". There are a number of other, similar, strategies I could suggest.
Or you could just check up on any of the other points made throughout the article.
No I wasn't confused. I am just kinda tired of both big "non-profits" doing celebrity fundraisers and making sure they get paid well while us parents and autistics have to struggle for real help. (I also don't believe that ASA should sell retail items especially when it competes with parents -but that is just another wrong they are doing...)
SOME High Functioning Autistic Persons and persons with Aspergers Disorder do not like Autism Speaks.
Many parents of severely autistic children do in fact like Autism Speaks.
Some parents are too busy to do the research. My brother was severely Autistic and now I am very and thanks to J&J's Risperdal I am now severely Autistic. My brother drowned after he started having seizures from drugs. I was not allowed to refuse Risperdal because of an add campaign that used fraud and bribery to deny me my right.
It is my opinion that a person involved in this type of fraud deserves jail time, not a 6 figure income at Autism Speaks.
Maybe YOU like them, but they certainly don't do you or anyone else any favors when they take in over $50 million and spend less than $300k on services and programs.
I do have some agreement with the "payroll" of Autism Speaks.
However, as a proud grandfather of a lovable nine year old, non-verbal boy with autism....I found YOUR comments callously dismissing the families depicted in "Autism Every Day" struggling to raise a severely affected children with autism...as seeking "pity"...or even worse....offering "excuses" for the murder of children with autism...outrageously meanspirited and shamefully hurtful.
My friend, you have every right to reject "Autism Every Day" as not representative of YOUR life or YOUR experience with autism...but..just for the record...my family neither wants nor seeks your "pity"..and...we sure as heck do not want you presuming to "speak" for us.
I really do appreciate your investigation into the financial side of these 'Fundraising' Societies. It is what is wrong with the society today "Opportunists trying to make a buck off of my autistic son" <<<<Quote me on that. Also, I go rabid-crazy when some mother in Houston starts to brag about the wonders of the DAN doctor in Houston who is a CHIROPRACTOR! He's not a medical doctor, but sidesteps it by having ties to somebody who is a med doctor, and making recommendations' on treatment for autistic children. He also treats them with 'herbal' medicine, which is another fallacy of autism. All chiildren can beenfit from B6 and B12, but autistic children, even more so, but I don't need to pay him a fortune in my life savings to get a B12 injection. I can go to my pediatrician and get that.
Also, I agree with the Autism Society of America is supposed to be the main society for Autism, but they've done nothing for me, but ask ME for money to advocate autism. Aren't I broke enough trying to pay for my son's Therapies that are not covered by insurance? Why can't they solicit OTHER sources of revenue, and stop sending me letters to make donations to further their financial fortune. I'm just trying to stay above water on my son's treatments.
You keep reporting and I'll keep reading.
Wow. Perhaps you should have posted that this as an Opinion piece -if the autism community supposedly says they don't want Autism Speaks talking for them- who told YOU to do it? You've totally discredited yourself by mentioning the Alison Singer excerpt from "Autism Every Day"... you've conveniently taken it out of context. Makes for a riveting read, although it's TOO BAD she was discussing her frustration of not being able to provide her daughter with a proper preschool program, not a desire to harm her own daughter! Get your facts straight- your making yourself a part of the media/blogoshpere problem.
I think everyone who supports Autism Speaks should see this. People who participate in those "walks" most likely have NO IDEA that the majority of their money goes to pay FAT salaries to the top dogs of the organization. That's disgusting. ANY charity which conducts itself this way should be exposed. Daylight sends the cockroaches scurrying for cover.
Your statement about AS suing the t-shirt person is a lie. They never sued them, they never had anything to do with it. Zazzle who had the web page hosting this person unilaterally decided he was violating their terms of service, AS had nothing to do with it.
Neurodiversity should love autism speaks as they have donated half a million dollars to ND researcher laurent Mottron, but the fact that he and his sidekick Michelle Dawson have accepted this money does not seem to bother anyone who does not like autism speaks
On re-examination, it seems you were partially correct, Jonathan. Autism Speaks did NOT sue, but DID send a threateningly-worded Cease and Desist letter to Zazzle, which led to a unilateral decision to pull the shirt to avoid a frivolous lawsuit over a fair use of the trademark. Autism Speaks has attacked many other fair-use applications, especially parody sites, critics, and anybody else who dares to disagree with them or their actions. Autism Speaks doesn't speak for any of us, and I'm just one of many voices telling them to shut up.
My opinion (a mom of a child w/autism):
Autism Speaks wants to remove autistic people from this planet. Autism Speaks seeks a "cure" for Autism. Period.
A fine example of this type of mindset is the Nazi's wanting to wipe out the Jews.
I find Autism Speaks an offensive and disturbing organization.
Keep enlightening us.
Thank you,
MK
i am 26 yrs old wit 3 kids n one of them is autistic P.D.D to be exact and to be honest im still learning after 7 yrs its a process we all have to deal with in familys and in society as a mother of an autistic child i am glad there are websites that spoke up and answered questions that i might have never had an answer and nothing or no one will ever remove my son or his pesonality from this planet he will always be who he is n i dont want to change him i only want to make him better he will always have problems i had to accept that from the begining before i could go another step n i was stuck there for awhile but when i moved on my eyes were opened to a whole new world .......it was his world now its websites n other people that have gone thru what i have that helped me understand all people have in this world r questions n little answers but sometimes just knowing u aint alone makes it better but when it aint enough this websit might not provide what u want to know or hear but i bet u will learn something u didnt no or another question u might have had will b answered sorry for the way i feel but ne help n support is a blessing for my family n lots more im sure
As an adult on the autism spectrum I say once again to Autism Speaks, "Nothing About Us Without Us!" ...without a doubt, Autism Speaks does NOT speak for me!
Marc,
Very interesting perspective. Thanks for posting this.
On thier website, Autism Speaks claims the millions they have made in grants to autism research. Are you not mentioning this because you don't believe in the research they are doing? Just curious.
They've been around since the early 90s. That's enough time to rack up a few million in grants at the rate of $100,000-$300,000 per year. Still, when compared to the fact that they take in over $50 million in a year, those paltry few million can seem rather insignificant compared to the hundreds of millions they did NOT put into those grants.
Carly, regardless of the context, no parent, under ANY circumstances, has the right to say that about their child in a public medium. She should have saved it for her shrink, instead of contributing to a film that leaves parents too busy grieving for days for the child they never lost and always had to actually play with and care for their child as they otherwise would have. If she did not mean those words, she should have not said them. It may also interest you that she has never once apologized for contemplating that murder-suicide and talking about it when her autistic daughter - who was verbal, communicative, and more than capable of understanding what her mother was saying - was in the room. It's clear she didn't care then, and is too busy crusading against vaccines to care now.
I will say this, how can a society call itself "autism speaks" if no one with autism has any autonomy within the organization?
It seems to me alot like the taxation without representation of old Britain--at best that is. It could even be compared to things far far worse.
James, they exercise the "No True Scotsman" line, claiming that the very ability to object to them means that we can't be autistic. I know it sounds bizarre, and it is, but desperate people will believe just about anything that they are told to believe by the shepherd they choose. For more information, see the following link: thiswayoflife.org/youarenot.html
As a PROUD mother of a son with Autism and 2 daughters on the Spectrum, I DON'T want my children "CURED". Then they would not be the children that I have nurtured and loved. I am sick of people running to the next snake oil salesman who promises a "CURE" for Autism. Accept the child that GOD gave you and work with who you have. Be PROUD of your child because they will AMAZE you. When I first received the diagnosis of Autism, I did not cry. I tried to educate myself on Autism and not on children with Autism on Adults because I wanted to know what to expect of my son. If my son grows up (he is 11 now)and goes to College or if he doesn't, I just want for him to be happy, healthy (which he is) and give and be loved (which is also is). I would not change MY kids for nothing in the world. Thank you Marc for all of the information and just being you!
Mr. Doherty,
No one is "trying" to do anything as far as my children are concerns. By the way, did I say that I was nauseated? NO. And to be honest with you my girls have a near genius level IQs but have Social Skills issues. My son has High Functioning Autism, but Autism does not have him. Maybe you are the one who needs to stop being BITTER for what has happened to your son and be THANKFUL that he is alive. You are BLESSED to have a child because there are many who would be GRATEFUL just to have a child whether that child has Autism, Down's, Muscular Dystrophy or any other different ability. Believe me, I know that I am. Because I was told that I could not have children. So you have a wonderful day and the best thing that you can do is ADVOCATE for your child as I do.
THANK YOU Sharon and Marc for all that you do!
Some many have given autism a bad name unintentionally or not, I feel its time to be more inclusive of those with lived experiences and help open the window fully to none spectrum individuals, what ever our differences we all need to work together, neurology complexities effects many more individuals be it autism or another neurology condition... and spectrum and none spectrum individuals are all unique and varied no one way correct, its what works and embracing the individual in each child and adult, allowing and accepting... I feel no one should try and change someone to a stereo type, wanting a child to conform fit, first truly ask for who. I do not suffer, but at times unfortunatelly suffer ignorance of the at times the wrongly informed... Aspergers Parallel Planet web site, real insight in to the autistic mind, point of view
Harold, I deleted your two most recent comments due to inappropriate personal attacks. Debster, I took care of your accidental double-post.
Very interesting post.
The financial info alone makes me sick and disgusted.
Thanks for the spirited conversation.
Excellent article.
People should research AutismSpeaks' board of directors.
Marc, Please do some follow up articles. We need more informed people in the autism community. Thank you so much.
I tried to post a response but it was too long and so I have posted it on the Autism Science Foundation blog with a link back to your article. It is posted at autismsciencefoundation.wordpress.com
AS falsely accused me of threatening and harassing people outside of an AS benefit. I was standing on a public sidewalk politely asking people if they’d like info on vaccine safety. They called the police and tried to have me arrested for it, then Shari Goldberg, the Cleveland chapter AS president, lied on a public internet forum where she was trying to raise money and said it never happened. I have a copy of the police incident report but as so many of the organizations here in Cleveland are in bed with AS it’s been hard to post the url online via their organizations’ forums. But it DID happen, Ms. Goldberg, you liar. My husband was with me, there were other witnesses, and the police said I could stay because I WASN’T harassing or threatening anyone. Unless you feel threatened by the truth, Ms. Goldberg.
I don’t have children dx’d on the spectrum Ms. Goldberg, but don’t you DARE presume to tell me I don’t know the suffering autism can cause and thus am not entitled to be heard.
Ms. Singer, while I'm mildly surprised that you've taken the time to respond, and while what you said may have been what you were feeling, saying something in those terms is something best reserved for your therapist's office, not a public service announcement that's been seen by millions. Again, your attempt to better understand the perspective of neurodiversity activists is appreciated, but it seems you've only been able to do so since resigning from Autism Speaks last year. Is this a new initiative on your part, or were you discouraged from taking such actions when you were representing an organization well-known for its refusal to engage in meaningful discussion with self-advocacy organizations? I understand if you cannot respond due to any contractual obligations, of course.
Not long ago, Ms. Singer was one of the many making at Autism Speaks making over $150,000 per year before she put her tail between her legs and ran. How does it feel to have ripped off so many unknowing parents Ms. Singer? You're a disgrace.
While I am grateful for Ms. Singer's response, I would like to see one from a current Autism Speaks executive. Of course, since they have attempted to differentiate between autistics who can and cannot communicate in the past, I do not expect a public reply.
Excellent article Marc. Please do a "part 2." We need to get the word out about Autism Speaks. So many parents are being conned by moronic people convincing them walking and raising money will help their kids when in reality most of the money is going into the pockets of the deadbeats at this revolting organization.
Seems like Mr Cohen's biggest problem with AS is that they want to cure autism. From the article:
<i>"their insistence that autism is universally tragic and that autistic people should not exist (their insistence on "curing" autism, which can only be done if a prenatal test is designed to facilitate the decision of whether or not to abort the fetus)."</i>
Somehow, I doubt that AS's official or unofficial position is that all autistic children should be killed pre-partum.
Cross-posted at Age of Autism.
Mr. Smith, it is not always about what one intends, but also the most likely outcome of one's actions. For comparison, let's look at the "cure" for Down Syndrome, also known to geneticists as trisomy of the 21st chromosome. All the genetic research conducted on it was to "better understand the condition". At the end, a genetic test was developed that could be performed by obtaining a small sample of amniotic fluid. Over 90% of fetuses that test positive are terminated. I see no reason why something similar wouldn't happen to fetuses that test out as being likely to be autistic (even if they tested positive, it wouldn't be a certainty). Regardless of what Autism Speaks may initially claim to want, the only so-called "cure" that would be developed is social pressure to terminate the pregnancy. Also, next time you want to cross-post one of my articles, please ask for my permission by email first.
Don't even bother trying to post a comment on Alison Singer's pathetic Autism Science blog. She is a coward who would never print anyting that didn't show her in a good light. I do see that she writes that her parents dumped her brother in Willowbrook when he was young. Now I see where she gets the "I should just drive my kid off a bridge" attitude. "The apple don't fall far from the tree" as they say! The horrific atittude towards autism clearly runs in the family.
Marc, thanks for taking the effort to look into these matters. I have never felt what AS is doing as "right".
It's particularly sad that so many family members have endured rain and blisters on their feet just to primarily pay for a few employees who avoid the rest of the autism community otherwise.
Some think that AS is just part of a Bernie Marcus ploy to prevent any research which may lead to legal actions being taken (Mr Marcus hates litigation unless it is protecting his interests and spends lots of money lobbying and contributing to politicians who seek tort reform).
But there are plenty of other good autism organizations to donate to that are directly helping such as AutismOne, NAA & ASA.
Jenni, out of professional courtesy, I have notified Ms. Singer of the comment I have left here. I felt it appropriate to keep my response here since the only reason Ms. Singer posted hers elsewhere was the limit on the length of comments Examiner.com has.
Yes Marc, I agree with others. I think others should know more about what was in their 990.
First, Mr. Rosen, sorry about messing up your name. Not sure how I got Cohen.
Second, I cross-posted my comment at Age of Autism, where they had linked to your article. I didn't post your article anywhere.
Now, to your response. You are assuming that autism is a "genetic disorder", like Down's. In legal terms that is called "assuming facts not in evidence". It is not known what causes autism. It may be genetic, or it may be environmental, or it may be a combination of the two, or it may be something completely different.
From your response, it seems you have a rather binary view of autism, we can A) not treat autism and, I guess, rely on parents or society to care for autistic, especially severely autistic children, or we can B) kill em' all and let God sort them out. I think there are other options. I choose none of the above. I think autism can be cured. I've seen remarkable progress in my son since we started intense behavior and biomedical therapies on him.
Here's another foot soldier for Autism Speaks. I wonder how much this one makes for brainwashing parents into thinking all the money from those walks are actually going towards the children. Also please note the pattern of those working for Autism Speaks. Most of these people are from wealthy communities. So the rich get richer and the kids get nothing. Please continue to shine the light on these people and this organization Marc.
Judith Ursitti is Regional Director, State Advocacy Relations for Autism Speaks. Judith is primarily responsible for managing the relationships between Autism Speaks and the state and local governments of designated states, Autism Speaks constituents and state chapter advocacy leaders, as well as other autism organizations.
Rob, even though you seem devoted to your particular brand of thought, I've never said that all attempts to help autistic people are wrong. I would, however, say that "help" and "cure" are totally separate terms that shouldn't be commingled when discussing autism. To "help" someone requires the understanding that they won't be someone or something other than who they are. We'll never NOT be autistic, because we always were autistic. The idea of a "cure" would mean to take someone who's autistic and PERMANENTLY make them NOT autistic. There's no evidence that such a thing is possible, and anyone who says they've done it is a liar. I don't care who you are, you haven't "cured" someone who isn't sick, and you never will. In fact, I'd say the people who REALLY need to be cured are people like the commentators over at Age of Autism, who frequently bash autistic self-advocates on the basis that we can communicate, and thus can't be autistic, as has been noted in prior comments.
Well written Marc. Thanks. This is info that needs to be known. I agree with your response to Ms. Singer-comments like that are best said in a therapists office. No matter what her reasoning behind them-the damage is done. It has opened the door to the "I'm a victim of my childs autism" crowd. Books like "I wish my kid had cancer-one families journey through autism" have been published. It is really quite horrifying and serves no purpose-no positive purpose.
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