On August 24th 2015 the LA times published the article Autism Speaks needs to do a lot more listening written by author Steve Silberman.
In his article Silberman states that even though awareness and attitude towards autism have changed for the better since the 20th century non-autistic people still do most of the talking while the actually autistic are being “sidelined”.
He points out the complete lack of autistic people on the board of Autism Speaks. He quotes passages from the infamous “I am Autism” video the organization published in 2009 to portray autism as a horrible disease that will rob you of all joy in your life, take all your money and leave you broken.
Silberman then quotes former NBC Universal Chairman Bob Wright and his wife Suzanne, co-founders of Autism Speaks on how they refer to autistic children as “missing”. Then he goes on to the fact that the organization uses their research money to develop prenatal tests for autism. And he states how little money the group uses to actually help autistic people alive today.
Silberman also quotes John Elder Robison, an autistic man who used to work for Autism Speaks but has long resigned and is now speaking up against the group.
The article can be summed up as an outreach to people everywhere to see the true nature behind Autism Speaks. And since Silberman is not autistic himself, cannot be declared mentally ill or unworthy to be taken seriously people are listening.
But not Autism Speaks. True to their name, instead of listening to what the author has to say, they started speaking up right away. Instead of listening to the hundreds of comments from actually autistic people the article has inspired Autism Speaks published their “Call for Unity” just one day later.
I was thinking about not linking to Autism Speaks’ reaction post here since I do not want any affiliation with the group on this blog. I did not want people to click a link and end up on Autism Speaks’ website.
I changed my mind. The reason I am putting a link to Autism Speaks’ blog post right here are the comments under that very post. You can read direct replies of actually autistic people there and those voices deserve to be heard. So here is Autism Speaks’ Call for Unity
And because this is such an important event in the actually autistic community I am going to take that blog post apart, piece by piece, and tell you what it really means.
I am going to tell you what I think about the words Autism Speaks (yet again) uses to try to discredit anyone who speaks up against them. I am going to take away the curtain of pretend-care for autistic people they so cleverly pull over people’s eyes.
Author Steve Silberman painted a portrait of our organization and mission in the Los Angeles Times that may reflect his point of view but is a disservice to the millions of people who have both supported and relied on Autism Speaks over the last ten years.
In fairness to these people, and to the countless volunteers and champions who have worked so hard to improve the lives of those affected by autism, it is important to set the record straight.
Autism Speaks declares that having a negative view of the group means doing a disservice to everyone affiliated with it in any way. Why is that horrible? Because nobody ever did that and I doubt anyone ever will.
People speaking up against Autism Speaks know that the large majority associated with the group has no idea of their true agenda. They have been blinded by Autism Speaks very effective media presence and propaganda. They are not to blame and they are not being blamed.
No. People are speaking up against the leadership of Autism Speaks. People are speaking up against the people in positions of power. Against the people who put false beliefs in other people’s heads.
But Autism Speaks does not stop there. If you speak up against them you do not only attack volunteers, donators, and parents. No, you are also doing “[…] a disservice to the millions of people who have […] relied on Autism Speaks over the last ten years.”
Relied on? Those are parents of autistic children, right? Yes. But those are also the autistic people themselves. Everyone who has ever gotten any kind of service from Autism Speaks falls under this category.
Autism Speaks dares to declare that anyone who speaks up against them ultimately speaks up against autistic people as well. And all of that in the very first sentence of something titled “A Call for Unity”.
Once you believe Silberman (and others who speak up against the group) attack not mainly the leadership but everyone supporting the organization you also believe that that is wrong. It would be if that was what anyone was doing.
And once you believe that attacking everyone is wrong the person doing the attacking is discredited. That is how easy it can be to silence somebody’s voice if people do not read between the lines.
Chuck Saftler, an Autism Speaks national board member based in Los Angeles and father of a child with autism, put it well: “Without unity there is no voice. That does not mean that we cannot have a diversity of ideas and voices within the community, all of which are valid and need equal respect. Those who are least severely affected may just need an openness and understanding of the character traits that make them unique. Those who are more impacted by autism, like my son, may need therapies and hopefully a medical breakthrough that will come through scientific funding. And those who dream of being parents one day deserve to know their children will have the best opportunity to thrive in society without the challenges that are created by autism spectrum disorder.
They quote an autism parent. And I agree with most of this quote. But not for the reason Autism Speaks wants me to. First of all I absolutely agree with “That does not mean that we cannot have a diversity of ideas and voices within the community, all of which are valid and need equal respect.”
That is exactly what autistic people have been fighting for for years now. That is exactly why autistic people boycott Autism Speaks. They do not listen to us. They try to discredit anyone disagreeing with them – that is what this whole blog post is about in the first place.
I am unsure if the author of the post even understands that this quote means the group should be listening to all those autistic people who speak up against them because hey, all “ideas and voices […] are valid and need equal respect.”, right?
But then again, maybe that tiny little addition of “within the community” means only people in the Autism Speaks community and does not actually extend into the meaning of our society as a community as a whole?
I also agree with “therapies” and even the “medical breakthrough”. Many autistic people have hopes that medical research might tell them the cause for autism. I for one would like to know. Just because it is an essential part of me and I am interested in where it came from.
Many autistic people have hopes that medical research might help with all the co-morbid disorders that often come with autism. I certainly would be grateful if it was possible to get rid of some of the problems that come with my autism.
But Autism Speaks is talking about a cure here. It is not spelled out, of course, because that would cause outrage. But it is implied. And it is one of Autism Speaks true agenda points. They want a cure for autism. They want to get rid of it. And like it or not that does include getting rid of us. The autistic people. All the future autistic children who would get aborted once prenatal testing for autism becomes a reality.
That is what “[…]those who dream of being parents one day deserve to know their children will have the best opportunity to thrive in society without the challenges that are created by autism spectrum disorder.” means.
This is not a matter of interpretation. Autistic people have to be non-autistic to thrive. The fact that society could easily adapt and implement accommodations for autistic people that would allow them to thrive is disregarded. The fact that many autistic people thrive today is disregarded. The fact that “thriving” in itself is a term that is totally up for personal definition is disregarded. What does thriving even mean? Who determines if someone is thriving?
They quote a parent to make their words more real. More relatable. After all who could argue a man with an autistic child, right? He knows what it is like. He has a right to this opinion and because it is his reality it automatically becomes true.
So once you relate to the man and feel his struggle you understand he loves his son and only wants the best for him. If he says his son would be better of non-autistic surely that must be true. That is how this works.
I wonder why Autism Speaks has not spoken to his son instead. They are going to claim that he is too “impacted” by autism to communicate like they always do. They would claim that his father speaks for him, is his voice, like they always do. But what quoting non-autistic people talking about autistic people really means is that the voices of actually autistic people do not count. They are not useful to Autism Speaks so they use whatever IS useful for them.
For many, autism is a whole-body disorder: One-third of people with autism also have a seizure disorder, half suffer serious digestive complications, 49 percent wander, and more than 30 percent are non-verbal. Since 2005, the prevalence of autism has doubled, and there are now an estimated 3.5 million people in the United States, and 70 million in the world, living with autism.
True. Except for the part about the prevalence which I highly doubt. Yes, the raising numbers for the diagnosed cases of autism are correct. But that does not mean there actually are more cases. It just means more cases are being diagnosed.
This may simply originate in better and earlier screening and testing methods. I have been autistic for over 30 years. I only got my diagnosis when I was 24 years old. I am one hundred percent certain had I been born twenty years later I would have gotten my diagnosis at 5 years old.
People back then just were not very good at spotting and diagnosing autism. I personally do not believe there are more people with autism today. I also believe over-diagnosis exists in this age of total autism awareness. But this is of course up for debate.
With the rest of that paragraph I can agree. At least with the numbers. But what is relevant is the reason why Autism Speaks feels the need to include these numbers.
They are scary, right? Even if you are okay with your child being autistic, you certainly do not want them to have seizures, digestive problems, or wander off and get into harms way.
Non-autistic people also have a problem with autistic people not speaking because they feel that is horrible. So pointing out the number of nonverbal autistic people also works to scare people some more.
The rising huge numbers of diagnosed autistic people of course also serves to paint the picture of a disease epidemic that needs to be stopped.
To scare people. To make sure that even those who don’t see autism itself as a problem can get on board with the co-morbid disorders being a real problem.
Scare tactics have been on Autism Speaks agenda since the beginning. I have written about this before. Scaring people works wonders when you would not be able to get them on your side by telling them the truth.
We have invested more than $560 million in private funding into our mission, the majority of that in research. We exceed the standards of all charity ratings agencies and are partners with corporate leaders, sports leagues, other non-profit groups and service organizations to leverage every dollar we raise and invest.
To be quite frank: I had to laugh when I read this. It is unbelievable how bluntly one can distort the truth to fit ones needs. Note how it says “[…] invested […] into our mission” and not invested into helping autistic people.
Yes, Autism Speaks is raising huge amounts of money every year. Yes, they “invest” that money. But pointing out only one area of spending that readers of the blog post will most likely agree with instead of listing everything the money really gets spent on is just so sneaky.
I have written about this before so here is Autism Speaks’ 2013 audited financial statement. As you can see they spend their money in all kinds of ways but only about 4 % go towards directly helping autistic people and their families.
Most is spent on advertising, propagating their cause in the media and researching a cure for autism as well as finding a way to test for it in unborn children to make sure they are never born.
They want people to see how much money they raise. And by simply not stating all the places it goes that people might disagree with they hope to make the impression of being this huge charity organization that pours millions of dollars into helping autistic people.
I repeat this: Autism Speaks’ goal is not to help autistic people. It is to cure autism. That is where their money goes. Do not be mistaken by the media presence on which they spend millions of dollars.
While research takes time, there are millions of families who need support now. We have fought for insurance coverage for autism treatments and services, which on average can cost a family $60,000 a year. Today, in 42 states, it is mandatory for insurance companies to cover autism treatments. That is progress for every person on the spectrum.
Research takes time. That is one very short and simple line to wipe away the fact that Autism Speaks has been funding research for ten years now and what do they have to show for it? Nothing. What have ten years of research brought the actually autistic people? Nothing.
And that is not because research takes time. That is because the research Autism Speaks is really funding is into something that takes time. Finding a cause and cure for autism and prenatal testing is very advanced stuff. That takes time.
If Autism Speaks poured their research money into things that could actually help autistic people I am absolutely certain results would have come in by now.
Of course we can all agree that there are millions of people who need help now. But instead of admitting that spending their money directly to help those families would be better, Autism Speaks points out how they do help. Insurance coverage.
Do not get me wrong. That is a great goal to have achieved. And yes that is something that does benefit autistic people. But it is not enough. Not when you have a $560 million budget.
Because that is where they want the focus to be. They quickly point out that “research takes time” to shut up anyone who might take issue with their lack of results there. They then point out the need for help now while totally disregarding that they could give that very help but actually do not. And then move on quickly to show off their success in fighting for insurance coverage to make sure every reader is on their side yet again.
Because who could argue with an organization ensuring that therapies for autistic people get covered by insurance, right? Of course Autism Speaks does not mention which insurance companies actually cover autism therapies and which do not.
As you can read in the comments not all insurances cover. There are still countless people out there who cannot afford treatments. Disregarding that fact paints a false picture of Autism Speaks’ success.
In partnership with other autism advocacy organizations, we led the effort in Washington, D.C. for passage of the Combating Autism Act, the federal funding vehicle for autism research. This legislation, renewed twice since 2008, has provided more than $3 billion in funding from the National Institutes of Health.
In 2014, Autism Speaks, along with other disability groups, led the successful effort to pass the Achieving a Better Life Experience Act (ABLE), which will allow the 58 million families affected by a disability, not just autism, to set up tax-preferred savings accounts – much like 529 college-savings accounts.
I am not going to say much about this but I will say a quick word about the “Combating Autism Act”. It goes along nicely with Autism Speaks’ general agenda of painting autism as a horrible disease that needs to be fought, combated, and crusaded against.
Last year alone, specially trained staffers answered 47,500 emails and phone calls seeking autism information and resources. Guided by sound research and best practices, our Autism Treatment Network is a collaboration of 14 specialty centers across North America that provide families with state of the art, multidisciplinary health care for children and teens.
Autism Speaks offers more than 40 free tool kits addressing needs across the entire lifespan – everyday concerns from medical, vision and dental visits to behavioral challenges, nutritional issues and sleep disturbances. Our 100-Day Kit for Newly Diagnosed Families has been downloaded 150,000 times and translated into seven languages. There are also several tool kits specifically for adults, including those who are newly-diagnosed. We are extremely proud of our work with adults with autism and it is a focus of our mission. We have granted more than $2.25 million in funding for adult programming, and to date we have funded more than $1.2 million to 57 organizations to expand services for adults with autism. We have also in just two years funded nearly $550,000 to 23 postsecondary institutions serving young adults with autism through the Brian and Patricia Kelly Postsecondary Scholarship fund.
While the challenges and abilities of those living with autism vary, we know that each year there are 50,000 young adults who, at 22, age out of school-based services. Parents call this “the autism cliff.” There are few job opportunities, transition supports or independent housing options for those who want and need them. So we are working to change that. Over the past two years, Autism Speaks has held 28 town halls across the country focused on housing and employment. We are also helping employers tap into the talents and abilities of adults on the spectrum with TheSpectrumCareers.com (one of the lead developers is a young man with autism), to match job seekers to employers who have open positions.
Sounds pretty great, right? I have to say, when reading “Guided by sound research and best practices” I feel a bit strange. Why does that need to be pointed out like that? Maybe because Autism Speaks supports ABA therapy which is highly controversial. Or maybe because of the need to wipe the constant criticism from actually autistic people off the table.
I also find the not very subtle reassurance that Autism Speaks really does help autistic adults rather ridiculous. The claim that helping autistic adults is a focus of their mission is just laughable.
And pointing out the actual numbers in direct spending for autistic adults seems rather counterproductive. Again, a $560 million budget and that is all the spending for autistic adults they can afford?
Please also note the token autistic person mentioned at the end. Autism Speaks uses the fact that an autistic person is a part of something they do to prove that they are in fact inclusive.
Of course this is not only false but also a disgusting practice. And it is one Autism Speaks uses a lot. They do work with autistic people – but those people are never in leadership positions. They are merely there to give Autism Speaks the public appearance of being inclusive.
These paragraphs very clearly aim at discrediting all the criticism brought up again and again that Autism Speaks focuses solely on children.
Yet once you know the actual numbers in fund available versus funds spent to directly help autistic adults it becomes very clear that this effort is nothing but a surface measure to keep face in light of public criticism.
Because Autism Speaks is getting a lot of criticism about how they do not spend enough of their money to directly help autistic people. Pointing out the success of the tool kits aims to prove that they do directly help autistic people.
Of course offering those tool kits is free for Autism Speaks. Yes something went into creating them at first but after that initial investment (which is undoubtedly minimal compared to their funds) there are no more costs involved. So offering tool kits to download to millions of people is a very cheap way for Autism Speaks to be able to state they have helped millions of people. At the same time they can keep the actual money and do with it whatever they so desire.
Wandering is a true crisis for our community and often leads to drowning. Through the generosity of our supporters, who are parents of children on the spectrum, Autism Speaks is funding more than $381,000 in water safety grants, and providing other grants for first-responder training and wearable tracking devices.
There is nothing immediately wrong with this. Wandering is a real issue and danger for autistic people. I experience this myself and I can tell you something should be done about it.
Of course it is not “a true crisis” but anything else would not sound alarming enough. And let us just point out the money we spent again, shall we? Because we have not done that enough in this blog post just yet.
It is scary. Again. Fear is a very powerful tool. Wandering scares parents and caregivers of autistic children everywhere. And rightfully so.
But Autism Speaks indirectly uses wandering as an argument as to why autism is a bad thing and everybody would be safer without it. Do not get fooled by the surface truth. The real reason wandering is mentioned is fear mongering.
Raising awareness remains a focus for Autism Speaks. With awareness come understanding, acceptance and opportunities to help. More than 500,000 people, many on the autism spectrum, join our walks each year to connect with other families, find resources and raise money that benefits their communities.
Since Autism Speaks’ inception, awareness of autism has grown 49 percent in the U.S. among families with young children. We have formed partnerships in more than 70 countries to provide training and resources to professionals, parents and communities.
Raising awareness of course is not a bad thing. I am all for it. But not in the way Autism Speaks does it. Autism Speaks paints a false picture of autism and only raises awareness for that picture.
And that kind of awareness does not lead to understanding or acceptance. It ultimately leads to people donating millions to find a cure.
Then of course it must be pointed out how “[…] many on the autism spectrum […]” join Autism Speaks’ walks each year. What if the huge majority of those autistic people on those walks are the autistic children brought along by their parents? Or autistic teenagers and adults who do not know what they are even walking for?
Is it not very likely that many of the autistic people brought along by their ignorant non-autistic parents, friends, caregivers also do not even know what Autism Speaks really stands for?
Do not mistake numbers of autistic people walking on Autism Speaks walks for numbers of autistic people being fully aware of Autism Speaks’ agenda and supporting them.
Awareness is what Autism Speaks needs to raise more money. The kind of awareness they spread only leads to more people supporting Autism Speaks. It grows their organization. It does not lead to better lives for autistic people.
They have been criticized for this in the past so they need to make the false claim that the awareness they spread is a good thing by swiping the fact that their awareness is called fear under the rug.
And they need to point out actually autistic people being on their walks in response to the autistic community not supporting them. Autism Speaks will not be able to uphold their monopoly long term if people start realizing that the autistic community boycotts the organization.
As a spectrum condition, the needs, priorities and voices of people living with autism are diverse. We aim to include, respect and support this entire community in any way we can. There are hundreds of volunteers, full-time staff, board committee members and advisors on the spectrum who contribute in these efforts. Awareness and acceptance work hand-in-hand; unity in our cause will only make us stronger.
And so we’ll continue to raise funds and fight every single day to help all of our families live healthier, safer, more fulfilled lives.
President, Autism Speaks
They “aim to include, respect and support this entire community”? Really? That is just a boldfaced lie. Nothing else. For years Autism Speaks has ignored, silenced, and tried to discredit anyone who spoke up against them.
Just read the blog post again if you want. Where in it does Autism Speaks even acknowledge any of what Steve Silberman has criticized in his article? The very first sentence of the post aims to discredit the author. The entire rest of the post is all about showing off how wonderful, flawless, and without fault Autism Speaks is.
The claim to include, respect, and support is outrageous. There is no other word for it.
And of course it must be pointed out once more how many autistic people support Autism Speaks, right? “There are hundreds of volunteers, full-time staff, board committee members and advisors on the spectrum” will surely shut up anyone who claims Autism Speaks is not inclusive. Who are they? What are their actual roles? How much power do they really hold? Do they actually make any decisions? Small ones, big ones?
And finally I now believe that “unity in our cause” is only calling for those already associated with Autism Speaks to stand united against anyone who criticizes them.
Because if I am to believe that Autism Speaks is truly calling for unity among all of us, autistic and non-autistic alike, I have to assume Autism Speaks only wants unity on their terms.
In order to be unified we autistic people must stop complaining. We must accept the wonderful things Autism Speaks does for us. We must put aside our different opinions and join theirs. Because the second we speak up against anything Autism Speaks does we supposedly speak up against our own. The second we speak up we get declared enemies of the cause of helping autistic people.
It seems that no matter how many mistakes and wrongdoings are pointed out by actually autistic people Autism Speaks does not feel the need to react. It seems they claim the right to be beyond reproach.
What does it tell you that it took a non-autistic author for Autism Speaks to even acknowledge their existence and react? Countless autistic advocates have criticized Autism Speaks for years. None of them have been deemed worthy of recognition and response. That is absolutely unacceptable.
Yes, Silberman brought attention to a very important discussion. But that attention should have been given years ago, countless times before already. This fact alone shows Autism Speaks’ true nature.
Autism Speaks. If you want unity you need to include us. Listen to us. Respect us. We are just as human as you are – the only true difference between you and us is that you are in a position of power. Stop abusing that.
Please do check out the twitter hashtag #BoycottAutismSpeaks for all the reasons you will ever need to understand what is so bad about this organization.