What's Up With Autism Speaks
With all this influence, Autism Speaks' top executives have been able to direct the vast majority of America's private research dollars and also take a seat at meetings of the NIH and Department of Defense (which is sponsoring a fair amount of autism research). Because their focus has been on prevention and cure of autism, they have focused relatively little of their massive capabilities on funding programs and opportunities for people presently living with autism - and this has brought them some serious criticism from the autism community.
In the last few weeks, Autism Speaks has been actively promoting some of their more recent activities - many of which really do support the daily lives of people with autism and those who love them. At the same time, they are continuing their star-studded awareness work - with messages that might not please everyone. Here are a few of their more recent activities:
- approved more than $565,000 in funding for 29 family services community grants, most of which center on "education, recreation/community activities, equipment/supportive technology and young adult services."
- will undertake a multi-state initiative to pass insurance coverage provisions for autism services, specifically in Florida, California and Michigan (they have been actively supporting work in Pennsylvania)
- plans to triple the size of its Autism Treatment Network, expanding from five sites to fifteen sites across the United States and Canada. The network is a group of hospitals and medical centers dedicated to improving medical care for children and adolescents with autism spectrum disorder
Some wealthy, powerful Palm Beachers who have the rise of autism on their minds have settled on a mix of money, influence and entertainment to draw the entire region into the fold.Is Autism Speaks hearing the autism community as it dedicates at least some of its resources to treatments, programs and opportunities for people on the autism spectrum? Are their outreach and awareness efforts helping those who need it most - or simply raising awareness of Autism Speaks? Personally, I'm encouraged to see community grants and insurance issues are making it to the front page of the Autism Speaks website - though I'd love to see the organization create a division dedicated to living - and thriving - with autism.At The Mar-a-Lago Club on Thursday, they unveiled plans for Autism Speaks Week from March 24-30. The multi-pronged effort aims to educate, raise funds and advocate for affected families. And they're using television, the Internet and special events to widen the net.
Spearheading the push are Autism Speaks founders Suzanne and Bob Wright, former chairman and CEO of NBC Universal; event hosts Melania and Donald Trump; Brian Lawlor, general manager of WPTV; and Jaclyn Merens and Denise Negron, parents of autistic children.
Comments
The autism society of america made itself all but irrelevant to my family by focusing on nice stickers and magnets and warm fuzzy stuff for autistic people.
HATS OFF TO AUTISM SPEAKS for trying to figure out causes and cures. My son will always be autistic, but my grandchildren haven’t yet been born.
Autism Speaks: please don’t cave.
“A division dedicated to living–and thriving–with autism.” — If by that you mean employment and educational opportunities, that’s a good idea, and one taken up by Easter Seals and the Autism Society of America. Did you ask the Autism Speaks if it’s on the group’s agenda?
If you are talking about independent living options, do you know of any organizations that are working on this issue besides National Association of Residential Providers for Adults with Autism (NARPA)?
Michael
It is time to get the best doctors and scientists in the world together and try to find a cure for the present Autistic children. Funding is available so lets put it to work now.
Take a look at their form 990.
A-Speaks only speaks for the recipients of their research funding.
http://www.autismspeaks.org/docs/d_200705_AS_Form_990_-_2006.pdf
A-Speaks is quite possibly the worst thing to ever happen to the autism community. They’re gobbling up smaller organizations at a break-neck pace, which is only serving inhibit progress. That’s right, there has been next to NO progress since they’ve come on the scene. Only well-spun PR that entirely too many people gobble up like Thanksgiving leftovers. Those of you that love this org, READ, INVESTIGATE, stop listening to paid stooges, or fellow misinformed boobs.
I believe it’s commonly referred to as “damage control.”
They know they have a PR problem. They have, of course, hired the most expensive PR firm in the Country to tell them.
I agree with Paul’s comments. Autism Speaks is making great progress on behalf of those who seek to treat and cure autism. Which, conversely, is why they attract criticism from the anti-cure crowd. Stick with it Autism Speaks!
I went over the tax form submitted. Autism Speaks is funding better research than I’d previously assumed! What progress was made BEFORE they came along? Nothing that I noticed.
My son is 20, and believe me, in those days, there was NOTHING to raise awareness or research. How can that galvanization be chastised?
I agree, that at this point in time, we crave job opportunity and housing with support. The “all in due time” concept is a hard pill to swallow, but we have to start somewhere.
Autism Speaks founded by Suzanne and Bob Wright, former chairman and CEO of NBC Universal?
They support organizations (ok, swallowed them up now) like Cure Autism now! They use the best PR to engage in scaremongering the public to give up their hard-earned cash to fund research into curing what is NOT an illness, but a genetic tendency for high individuality, greater capacity for learning, innovation, independent thinking and refusal to follow crowd but have an inborn tendency to lead and set trends?
I’m sorry, isn’t it obvious to other, non-Autistic people also or are we alone in seeing right through their agenda? (which is in co-horts with the government fearing future dificulty in controlling millions of Autistics) Not to mention a clever way to centralise where all the money flwos to and pays their very nice wages…
Well, it’s as clear as day to me. Raising awarenes through misrepresentation of what Autism in pure form really is by siting the wortst possible cases of Autism+plus mental retardaton+plus other health problems and bruishing ALL Autistics with the same brush…. how clever. .. or rather manioulative, crafty and immoral!!!!!
I don’t support an organisation like that that dupes gullible people into giving money to misguided efforts and ignores the real suffering born out of ignorance and lack of knowledge about Autism.
I haven’t always agreed with every thing Autism Speaks has done, or the ads they air. In fact most of the ads I disagree with the comparisons however, there was nothing that brought autism to the lime light as Autism Speaks. All of the smaller orgs had never compared to what AS can and has done. So they can approach upper class monies like no other’s had prior, all the more power to them. No one can dictate where they use their funding, either. Daily living of the person with autism, and therapies is not an Orgs. responsibility. That is really a per State and National issue that they need to address as well as insurance coverage. Those things are what our politicians should be addressing and making new laws so that when any Org goes debunk, there is laws for our children and for our children when they grow up. If my child so needs it, there is such a place in the state where I live, and it’s big. It was created by parents many years ago due to their child having a severe disability, and nothing here for adults. Over the years they have expanded to include many other disabilities such as autism related disorder’s. They provide jobs at their site, and for those who can work in mainstream, they send support along much as a Para would do in school, but at the job site, to help the disabled person be successful. Autism Speaks did not have a thing to do with this, nor does Autism Speaks take away from this. Autism Speaks is a scapegoat for many.
I myself do not strive for a cure but don’t hold my personal opinions against their efforts. I also disagree that Autism Speaks is the worst thing that ever happened to the autism community. It’s Autism Speaks that got the word Autism to the American family household’s TV. Even though I don’t like their ads, it’s on cable networks as well and people are hearing the word. So I wont complain too much.
Oh yeah, I forgot to mention that I have Asperger’s syndrome (which is NOT an illness) but I do suffer from dyslexia, epilepsy and English is my second language (after Russian) which means I speak with a foreign accent and which is a “disability” in the eyes of some xenophobic people.
I DO NOT suffer from Autism – I love being clever! I DO NOT wish to be cured of Autism! And at 36, I’ve long gone passed caring about NOT being accepted into “cool crowds” – who proclaim themselves to be cool – I don’t find anything cool about being a slave to fashion that someone else created or being a sheep
)))))
Autistics are born leaders, not followers! LOL
)) (but thank God for non-Autistic normal people – or who would follow us? 
))) LOL 
)))
Roza
Ok Sandy, I suppose you’re right there: Autism Speaks brought attention to the word Autism and brought out Autism subject into mainstream so we’re THANKFUL for that! But isn’t it time now Autistic people themselves were allowed to be heard? So far, anyone who disagrees with anything Autism Speaks are doing DO NOT LET AUTISTIC PEOPLE SPEAK! Donna Williams – a best-selling author of 9 books who was diagnosed with classic form of Autism once dared to disagree with blatantly negativistic image of Autism that they push through their organization and (she told me herself) they’d CANSELLED HER APPEARANCE at one of their conference!!!! That fact alone SPEAKS for itself!!!! Despicable! Callous! Bygoted! Immoral – is what they did!
Autism Speaks is slick, good looking, financially well off and mostly misguided. Because it is driven by a single family (not that there’s anything wrong with that)you can look forward to seeing its focus change as their grandchild ages. People in the field see this all the time and accept it as a process.
Meanwhile, the organization has garnered some pretty bad karma points as it consumes weaker organizations, usurps local events (scheduling a “walk” at the same time as another organization in the same community, for instance)and alienate people (like the Wrights own daughter or anyone whose views do not keep with their Johnny-come-lately expertise).
Rozagy ~ I have always expressed I did not agree with Autism Speaks ads, their statistics or the video. But autism affects each differently, and since I don’t know these children personally, I can disagree with their look of autism. I can only say that look may had been my child at a younger age, but ‘looks’ do change, and it did for my child diagnosed with severe autism. My son also had always been able to smile.
Autism Speaks focus is a cure, it’s not showing children like my child who progressed well, or offering that idea for the most part that kids with autism can progress. It’s about a cure. I can only speak for my own desires on that topic as a parent, since I do not suffer from autism. I have asked my son however that if it could be taken away, would he want that? Since I am the parent, I’d have to make these choices for my child if there ever was a cure. I am more for acceptance of who he is and feeling good about his differences, since all people are different. His differences does not have to mean it is bad or wrong. My son however is not a leader, he is a follower and I doubt he’ll ever find it in himself to speak about his autism and how it affects him. I do agree that those with autism has contributed much to society with their different way of thinking, and if it weren’t for this, those idea’s may never have been thought of.
I am familiar with Donna Williams and along with many other’s like her, and have read many of their books. Those perspectives can only gain me insight into my own child. But one can not over look the parents out there that do want a cure for their child. Even though that’s not what I want, many other’s do and Donna Williams appearance at a Autism Speaks conference would have in fact may not had been appropriate due to the focus of a cure and these parents. Many parents never want to talk to me, their focus isn’t the thought that their child can progress as mine did, their only hope it seems is a cure.
I applaud you for being so self-sure and can only hope one day my own child can find that also within himself.
In the end one day, Autism Speaks may not find a cure for those with autism, however they may help to generate finding the cause and prevention. autism itself is controversial in many ways, and there is hardly one thing about it that we all ever agree on. The same goes to the efforts of orgs. No one ever agree’s totally with them all. There is no denying that if any one org has the ability to bring awareness and attention to autism, it is Autism Speaks.
My wife and I are the parents of six Autistic children (www.AutismBites.com)and so are VERY interested in anything ‘Autistic’. Regarding Autism Speaks we’ve never been strongly for or against. We’ve heard good, we’ve heard bad. I think it would be a good idea for them to have us speak at one of their conferences. It sounds like they don’t do that, don’t know why not.
Our goal is to create a foundation that helps parents who have been financially devastated by Autism. Our story will soon be out in a major national magazine and we are current in production of a documentary featuring our family.
Our goals are better and more awareness and getting support and financial aid to families.
“Funding for Autism research is good, funding to help with day to day living, is better.”
As the parent of a 22 year old young man seriously affected by Autism and as a person who has worked with families of children, teens and adults with Autism for the last 14 years I can say I am extremely disapointed with Autism Speaks. They sure as hell don’t speak for me.
Research? Give me a break… When they start REALLY funding research that will help find a cure for our sons and daughters (many vaccine or environmentally poisoned) I’ll be happy.
And this pittance of money they have ginen to 29 projectes to support people with Autism HERE AND NOW is laughable.
They will never get one red cent from me. I’ll make sure all the Autism walks I support and all the money I give is supporting people who live with Autism every single day.
I have a son who is 8 and diagnosed with autism. Autism Speaks has NEVER done anything to directly impact our day to day life or that of my son’s. I don’t know where the money they are raising goes, but no one in my city has seen a penny of it.
I refuse to have walks or other fundraising events for big organization who then TAKE the money and go use it for some other family somewhere else….I concentrate on raising money right here and it STAYS here, where I and others can help the families in my community.
IMO, Autism Speaks only cares if you are rich and believe what they believe…..they don’t really know what is going on everywhere in the US…..the folks in places like New York, California, New Jersey, etc..don’t realize how good they have it with the services they have, the help, resources…nothing is perfect, of course, but we have NO ABA therapist where we live and no LOCAL doctors who have a clue as to how to deal with autism….most kids don’t even get a diagnosis until age 5 or later.
Autism Speaks will never get a penny of my money.
In 8 years, I mysef have not been directly affected or benefitted from one single organization, Autism Speaks or otherwise. I don’t expect to either in the next 8 years as well. Autism Speaks doesn’t speak for me or my child either. But then neither does the Autism Society of America, or any other. We speak for ourselves and how autism affects us, since no one Org. knows that info. but the Media coverage sure has helped, in my opinion.
I have no university base.
I have no access to funds from this or other charities.
My worth is probably huge in this quest but like many others we are ignored.
Better to support one family than an organistion that probably hands out less than 2 dollars on average to a family but how much to themselves in wages? I guess more than 100 000 dollars?
My pay for 12 years work ZERO
My pay from organisations like these? 60 dollars. Cost of 1 meeting they organise. I pay everything else. Travel, food, lodging etc.
Thanks for nothing.
A worldwide ban on mercury now may help stop autism in ten years time.
To allow the most toxic non radioactive element in our babies vaccines at age 1 day in 2008 may explain a lot.
But who is listening to experts with the background like me?
NO ONE
John Fryer GRIC MRIC PGCSE MSc BSc Advanced Analytical Chemist and researcher for ten years on mercury and its compounds and little else
Autism Speaks and what they do with their research is up to each organization. An organization is not all about Thimerosal either and that’s about the time everyone stopped liking Autism Speaks. Very few Orgs. ever use their funds to directly help individual families. The public also has the right to donate their money where ever they want. We as the public cant dictate where people donate to, or how Autism Speaks uses it.
Whatever their motivation, Autism Speaks is responsible for a week long NBC coverage on autism, that alone is impressive and prior to that never had there been such coverage. And then they went so far as to make DVD’s of it for the purchase of shipping only. That did not directly benefit me but I am aware of many people who took advantage of that and the whole weeks coverage on DVD would be very informative to many. They also did not stop there with media coverage. I do not agree with all of their ads, but the publics perception of autism is never going to match my own child’s, so I am more than happy ads are there just so the public hears the word autism.
I do not agree with Autism Speaks a lot of the times, but they do deserve much credit, where credit is due, just as any one org deserves credit and recognition for their efforts. Autism Speaks also is a relatively new Org. one can never tell what they may do in the future however I have a guess no one will agree on that, either
I am a mother of an autistic 21 year old. I am also a nurse and I know that mercury did cause autism, at least in my own son.
Autism Speaks should devote half it’s money on research and half helping states provide decent employment and living situations for older people with autism. I think Autism Speaks is great because my son was born in the dark ages of autism when cold mothers and fathers were supposed to have caused their child’s autism. I am grateful for all the fund raising and awareness raising that they have done so far. Let’s not forget some of these people are new to the diagnosis. There are those of us who have been on board for decades; so let’s be patient, and vocal, about our concerns.
Forget about spending all the money on research. I also wonder if the parents who have younger kids with autism realize how fast they are going to grow up and how fast the age of 18 will come upon them?
Once your child turns 18, he or she is mostly in free fall.
gg schaumburg
san diego
John Fryer: “A worldwide ban on mercury now may help stop autism in ten years time.”
Thimerosal and mercury have not been used in childhood vaccinations in a decade now and still the number of children being diagnosed with autism continues to rise.
Between this fact and the fact that scientists have repeatedly proven that thimerosal and mercury do not cause autism, focusing on mercury as being a ‘probably’ cause of autism is insane.
Einstein said, “The definition of insanity is doing the same thing over and over again and expecting different results.”
Raven – you’re a Genius!
I couldn’t have put it better myself.
incidentally, they published a study this week that proves that mercury definitely didn’t cause Autism. I knew tht, because I did not have that vaccination (I was born in the old Russia) and I have a diagnosis of Asperger’s. My son was vaccinated without mercury and he has a diagnosis of Asperger’s. Now, are Autism Speaks people going to finally concentrate their efforts obn helping those Autistic people who are alive today rather than prevent Autistic babies from being born? (through abortion, no doubt?) Because Autism is genetic and unless they kill their Autistic parents, there will be more and more Autistic children born every year.
I personally get on much better with Autistic people because they tell the truth, are staright shooters, keep their word and don’t stub you in the back like the “normal” people. I have no problems living in the world of “folks like me” – why ever not? I was a screamer and head-banger as a child, bnow I’m University educated, independent adult with husband and kids of my own. I LOVE being Autistic!
A-Speaks is quite possibly the worst thing to ever happen to the autism community. They’re gobbling up smaller organizations at a break-neck pace, which is only serving inhibit progress. That’s right, there has been next to NO progress since they’ve come on the scene. Only well-spun PR that entirely too many people gobble up like Thanksgiving leftovers. Those of you that love this org, READ, INVESTIGATE, stop listening to paid stooges, or fellow misinformed boobs
I have a loved one with Autism and while I know in my heart a cure is not possible, I will support any organization doing research that will benefit the next generation. And for the record..
Autism Speaks brought National attention, which in turn brought more programs into the public schools in my area. Prior to that the kids were thrown in special ed. I thank God we finally have ONE strong voice.
I have 3 sons and the two older boys are on the Autism spectrum. I see the older they get the harder it is for them to form friends and relationships. Autism Speaks help educate children as well as adults. Both my sons are verbal and when my 10 year old asked me why am I not like everybody else I did not know what to say and it hurt. Maybe my grandchild will not ask me that question with the research Autism Speaks has done and is doing today!