Autism Speaks' Problems Grow
This week, the Wrights posted a press release on the Autism Speaks Web site in effect disowning daughter Katie's comments in a video interview she gave to a critic of Autism Speaks. Katie Wright also appeared on the "Oprah" show in April, where she talked about the split in philosophies with her parents.Not knowing a thing about the relationship between Katie and her parents or Thierry and the Wrights, I have no light to shed on these news items. What I can say, though, is that the autism community is NOT united behind Autism Speaks. In fact, it is becoming consistently clearer that Autism Speaks is speaking for only a very specific group of people - and that that group does not include individuals on the autism spectrum, parents concerned about the possible impact of vaccines on their children, or many others with a vested interest in autism action and advocacy.Even the press release issued by the Wrights itself caused a buzz because it initially read: "Katie Wright is not a spokesperson for Autism Speaks. Our daughter's personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. ... Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks." Ouch!
Only later, when the statement seemed too harsh, the Wrights changed the release, adding of Katie: "She is our daughter and we love her very much."
But the damage was done.
With the scandal quickly overtaking the cure of autism as a subject, comes a new dilemma. Filmmaker Lauren Thierry is accusing the Wrights of appropriating her award-winning film "Autism Every Day" for their own purposes. Thierry made the film, which was shown at Sundance this year and is in this month's Nantucket Film Festival, after the Wrights saw an earlier, shorter version they liked.
Thierry says Suzanne Wright then commissioned a feature version, and told her "money is no object." While the Wrights paid all the film's costs, they never came to terms with Thierry, the director says. They systematically cut her out of the promotion of the film, she says, when the Wrights took it on the media rounds.
With so much to offer the autism community, Autism Speaks still has a tremendous opportunity to manage this situation for the better. By acknowledging the importance of other perspectives, and incorporating other voices and agendas into their message, the Wrights really could develop an organization that "speaks" for autism. Whether they choose to do so remains to be seen.
Comments
weeeell…. high profile people are targets for scandals, and sometimes they create their own scandals to get press attention. I have no idea what’s going on with Autism Speaks our their inner family circle but quite frankly, I don’t really need to know. At the same time, it’s hard not to get reading into it all. Autism Speaks is so big, it’s squashing out all other Orgs but they aren’t too big for scandals and questions of their business practice. One wonder’s who does their audits.
I can see where Autism Speaks needed to make a public statement, but I feel it wasn’t well-thought out prior to making it public. That’s obvious as they keep editing their statement. I also feel they should have had next in line of Autism Speak release the statement, and not the Wright’s.
It really just goes to remind us all, even those of all walks of life experiences rifts when there is a family member with autism. It’s also a reminder sometimes family members cant coincide within business without conflicts. Although I find this topic quite interesting and it seems daily my eyes pop out, Orgs all serve a specific purpose and really are based on their beliefs. It’s when they change that belief or alter it get’s one to thinking.
Not sure what’s going on in the Wright family or Autism Speaks, but while they’re duking it out, that hardly seems as relevant as our kids still have autism no matter what’s going on over there. The focus should be that, not them and I wonder of who within the autism community is forgetting that
Autism Speaks may be big and great, but hey, so is my kid! I want to hold up a white flag and wave it over here….. let get back to autism and the why’s of it
THe scientific process is not a town hall meeting. The proper thing for laypeople to do is to listen to scientists from upper tier medical schools, and not to muddy the water with their own commentary. The Autism community is plagued by peoples’ inability to know when not to speak, and by the inability to tell a reliable source of information from an unreliable one.
John, I agree that the information one seeks out regarding treatments, causes and definitions of ASD need to be credible and valid. However, I take issue with your direct assertion that such ’science’ is only produced by top-tier universities. It is the complete eclipse of reason to ignore the observations of thousands and thousands of parents whose children have ‘disappeared before their eyes’ following routine vaccinations. My wife has often refused our weekly night out after our children’s immunizations because of the doctor’s suggestions that the child may develop a harmless low fever or pain at the site of the innoculation site. My point is that my wife is making a point to observe our children. In fact, infant and toddler ‘well baby’ visits are scheduled and paid for by most insurance according to vaccine schedules.
‘Science’is based on observation. I recognize that many studies have failed to connect the dots between vaccination and autism however the body of observational evidence that exists pointing to a connection is compelling and represents its own ‘proof’ to those of us still willing to give involved parenting the tip of our hats.
There’s a reason why AUTISM SPEAKS does NOT speak for all autistics. Autism is genetic as has been proven by serious research done by a number of medical researchers and scientists around the world. Other factors may exacerbate the condition but it is first and foremost a genetic coding just like skin tone, hair color and foot size are.
AUTISM SPEAKS does not speak for autistics but rather if speaks for non-autistic parents of autistics. WHen their own VP of Communications, Allison Tepper Singer can say in a documentary and the repeat on national television that she seriously thought of driving off the George Washington bridge after she realized that her daughter, who was to attend regular school, would be in a special needs classroom with 11 other students, one teacher and appropriate supports (educational assistants and personal support workers), but she didn’t because she had to think of her ‘normal’ daughter (who was not with her at the time of the incident), it’s not exactly a resounding endorsement of positive and healthy support for individuals and families with autism.
AUTISM SPEAKS has now joined forces with NAAR and CAN, two more organizations who think that by abusing autistics with ridiculous snake oil medicines, therapies, etc., that they will CURE autistics.
How many of us would sit back and allow these sorts of atrocities to be conducted on African Americans in order to get the color out of their complexions or on homosexuals in order to make them heterosexual or on persons with big noses so their noses could be made smaller so they would be ‘normal’? I would hope none of us.
And yet, this is the very thing that society allows to happen to autistics without so much as a thought of how wrong it is.
Like those who are neurotypical, not all autistics are the same. Some have low IQs and some have high IQs and a lot have bell curve median IQs just like those who are neurotypical. But everyone — and I mean EVERYONE — has feelings and thoughts that are uniquely their own.
I’m happy that the Wright’s daughter has spoken up and out about AUTISM SPEAKS and their agenda. Kudos to her.
you know, Katie Wright was a large part of the Autism Speaks video and endorsing and promoting it.
I couldn’t help noticing that Raven kept referring to individuals affected with autism, as “autistics”. It bothers me that parents and health care practioners continue to define these individuals by their disease. We don’t call people who have leukemia, “leukemics”. Let’s stop defining these wonderful people by the disease they are affected by and honoring them as the unique individuals they are.
As an autistic (who is proud to refer to myself as such) I also want to say how proud I am that the Board of Directors at the Autism Society of Canada sent a letter to Autism Speaks about the feedback they received from their Advisory Committee about one of Autism Speaks’ videos. The committee said they didn’t like the negative tone of the video, and they wanted to see ASDs portrayed in a more accepting an open manner. Autism Society of Canada took down the video from their own site, although they left the link up to Autism Speaks out of respect for those who wanted to see what Autism Speaks is for themselves.
Truly, Autism Speaks is offensive to most people with autism. I find that Autism Speaks works AGAINST my interests. They do not speak for me, or my particular brand of autism.
AS A PARENT OF AN AUTISTIC CHILD I THOUGHT THAT THE VIDEO WAS VERY WELL DONE. PEOPLE WHO DONT LIVE WITH THE AFFECTS OF THIS DISEASE CANNOT COMPREHEND THE MAGNITUDE OF IT ALL.iF SHE FELT HOPELESS ENOUGH TO CONTEMPLATE THAT WHO ARE WE TO JUDGE? YOU DONT LIVE IN HER MIND. THESE STRESSES AFFECT PEOPLE DIFFERENTLY.YOU DONT KNOW HOW MANY OTHER PARENTS MAY HAVE HAD THAT THOUGHT RUN THROUGH THERE MINDS WHILE THEY ARE CLEANING POOP OFF THE WALLS FOR THE THIRD TIME IN A WEEK.ITS A SPECTRUM DISORDER AND SOME OF OUR CHILDREN ACT OUT LIKE THAT AND MUCH WORSE. PAINTING A PRETTY PICTURE FOR THE PUBLIC WILL NOT GET THEM TO EMPATHIZE WITH THOSE OF US WHO DO IN FACT HAVE ASD KIDS W/ SEVERE BEHAVIOR PROBLEMS,LIKE ME
Is this a good organazation to raise money for or is there a better one?
HAH!
Lynn Marie obviously don’t know anything about being autistic!
I think Raven is autistic herself by the way, as there’s alot of auties engaged in her kind of movement.
Bob: I’d prefer the Autism Acceptance Project, but they just about to get famous.
Please do not define people with autism by their disease…as noted before. This is important on many topics/diseases in this world. Do you call people with albinism ‘albino’s’? This is wrong! Is someone with cancer a ‘cancer patient’, or someone with cancer? Think about it…let this change the way you look at people as a whole.
Autism Speaks is not and will never be supported by the Autism Community, They seem to only get input from parents and on Autistic people not from adults on the spectrum.
MARLENE I understand your frustration but you and everyone needs to understand that the Autism Spectrum vary’s differently for each person. They seem to only advertise the most severe cases of Autism, there are mild cases and people who have outgrown Autism.. and they don’t offer any treatment offers. There webpage and links are full of non-scientific trash.
It has been confirmed that vaccines aren’t the cause, (medical industry, removed it for couple years to make sure, and autism is still growing) why do they have links on there site that is old and not proven?
There Annual report spending is un-satisfactory to say the least, They should be spending money on helping Autistics get independent housing, educational support, a job, not research for putting a needle or whatever in a monkey that proves nothing about Autism. If Autism Speaks and those who support Autism Speaks if you did the research, you would know that Autism Speaks is going the wrong way…
I have Asperger’s Syndrome and Autism Speaks does not speak for me. There’s also one other thing that I would like to make clear. I’m disordered, not diseased.
I also have Asperger’s Syndrome and like Sid said, I’m disordered, not diseased.
Or even better, my brain works differently.
And Autism Speaks doesn’t speak for me either.
And to be honest, I prefer the ‘autistic’ versus ‘person with autism’
or ‘Aspie’ versus ‘Person with Aspergers’
You can’t cure me of of it for the same reason you can’t cure a little boy of his maleness.
It wouldn’t be him, it wouldn’t be me.
I am autistic. I would rather be called “autistic” than “a person with autism”. Autism is a way of thinking, a way of experiencing life. I do not experience it as a disease. I do not want to be cured. There are as many advantages of being autistic as there are disadvantages. I can only speak for myself, but I think that this may apply to individuals throughout the spectrum. Of course we should support parents who are struggling to raise their autistic children, but this need not conflict with understanding of the positive side of autism. Any worthwhile autism organization should respect autistic people, should listen to us, and should promote appreciation of our unique abilities. By this definition, Autism Speaks is not worthwhile, and I do not support it.
How much money are the Wrights paying themselves?
Annie mom of a much loved Autie who does not want to be cured of being who he is
Such groups must be agnostic in stance and must let the scientists do what we do. Autism Speaks has a very rigorous and honorable peer review process which is on par with the NIH process. They need to remain a mediator between the public who wants to support autism research and the many dedicated scientists who devote every minute of every day to the cause.
Also, when hundreds of millions of children have no negative reaction to vaccination, the “thousands” of apparent poor reactions are not, by any stretch of statistical and scientific reasoning, due to the vaccine but something else that coincided with the vaccination. Why is that so difficult for people to understand?
I love my work, but I ask you parents and patients to let those of us who have dedicated our lives to working on improving the lives of patients and families affected by autism do our work.
I’m a proud autistic, and I’ve got to say that Autism Speaks does not speak for me. I went to a regular elementary school and I was mainstreamed in the regular curriculum 85% of the time, in high school. I also went to college for two years. I work four days a week, and I’m independent. I also have friends who accept me the way that I am. I also don’t want future autistics to be cured or aborted out of the wombs of their mothers.