Curious: What exactly do we hate about Autism Speaks?

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Technically every organization and every person that speaks to help those autistic people that actually can't speak for themselves could be considered a voice for those people. It is a fact that many autistic children cannot speak at all for themselves and/or effectively communicate their needs through adaptive means.

Yes, I agree, the technology is improving to accommodate communication through alternate means, but if those people who still cannot speak/effectively communicate their needs were ignored, that would be casting them off. The majority of people that cannot speak with autism are young children, and that has been the focus of the organization since day one.

Those that do have the ability to speak or communicate with adaptive means are fortunate to have succeeded in communicating but that doesn't change the reality of those that cannot speak and/or communicate through adaptive means. These children exist, in large numbers, in the hundreds of thousands, as estimated by government the government in the US.

The reason the organization was founded was because of a grandson of Grandparents that did lose the ability to speak through regressive autism. At that point in time, this was the organization's focus; autistic children that had no ability to speak, and as they state it is their first and foremost concern to be a voice for those individuals that cannot speak for themselves.

Honestly, it's highly unlikely that they would have ever imagined, that people that could speak with Autism would take offense that they wanted to help children that could not speak and/or effectively communicate their needs, through research, and awareness of autism, and through that goal, call the organization "Autism Speaks".

For a parent that has a child with autism that cannot speak, it is certainly a phrase that rings true for the needs of their child, and yes, this is very much a part of the audience that the organization is focused on not just the children but the families of children with Autism as well.

Financial assistance for autistic people is not part of their current mission, so if one seeks to support an organization that focuses on that type of assistance, it is not the organization to support. Taxpayers currently fund the overwhelming majority of that assistance through government programs. So everyone that pays tax already helps out on that part.

The organization has never stated they were attempting to be a voice for autistic people that can speak, they make that clear in the statement in the text provided that there first and foremost concern is to be a voice for for individuals that cannot speak for themselves.

It's good that people with autism are speaking up for themselves and looking to gain additional rights in society, but those that are actually speaking up are rarely heard for the most part, because the voices are few that are actually speaking an opinion on this, relative to the entire population of diagnosed autistic individuals that exist.

A handful here on wrong planet, a handful on AFF, individual blogs scattered on the internet, and ASAN, an organization with hardly any funding, with no apparent goal to fundraise, that reaches a relatively small percentage of autistic people that exist in the world.

These organizations do not have the resources to provide awareness of autism to populations in countries in the hundreds of millions; they play an important role, but the other organizations play an important role as well.

The only way that the voices of autistic people are going to be heard in these larger organizations is if they get involved in providing an autistic voice, like John Elder Robison is doing, the owner of this site. and other handfuls of autistic individuals spread here and there throughout the country in organizations like AANE.

It is now obvious that Autism Speaks is willing to allow those voices to be heard, but it is even more obvious that there is little to no interest in providing any input to that organization, for those voices to be heard.

The recent interview with the organization, and attempt to open up an avenue for that communication, is fairly good indication that when it comes down to it, there really aren't many people that have an interest in making their voices heard in the organization and care to offer input or gain clarification on the problems they see in the organization.

The bottom line though, is they have the resources and means to make those scattered autistic voices without the resources heard if they want to be heard; they certainly can't make anyone provide those voices to the organization if they have no desire to provide them.

I respect your opinion that you don't like the way that Autism Speaks talks about speaking for autistic people that can't speak, but I'm really not seeing any significant harm coming from it.

People are funding autism speaks because they support the organization; they either check out the organization and support the mission, or blindly support it, which is not a good thing to do when donating money.

If autism speaks were not around, another organization would quickly take up donations for research, just at they did before autism speaks came along and absorbed those organizations.

A search on guidestar.org, non-profit research watchdog group, shows over two thousand non-profit organizations associated with autism in the US alone.

While Autism Speaks may be the biggest and most vocal organization in the US associated with autism, the money from the public that goes into that organization is nothing compared to the funding that totals for the other thousands of non-profit organizations associated with Autism in the US.

Interesting to me that rarely does anyone speak about the other organizations doing positive things that aren't making the mistakes that have been attributed to autism speaks.

I never noticed the organization existed before I came to this website. But here the words Autism Speaks is an attention grabber. An average of about 1500 people at any given moment are viewing this site, likely the majority of that are just curiosity seekers, and there is usually some thread in view somewhere that has the word autism speaks in it.

This website is probably one of the best souces of advertisement for autism speaks that exists, just because people, like the Op of this topic, are curious why are autistic people mad at an organization called Autism Speaks that is supposed to be helping autistic people.

I would imagine in any given year autism speaks gains hundreds if not thousands of supporters, overall on balance, from just the fact they learn the organization exists, from the attention grabbing threads that have the words "autism speaks" in them on this website.

Sorry for the monologue, but I find the hatred for Autism Speaks interesting, the same way I find hatred for religions, politics, and football teams interesting, it seems just a part of human nature to me, one of the few things in life, that will automatically generate a good controversy.

Football and the Penn State issue, highlights the sacred aspect of football that it not too far out of the league of religion, and politics.

Not sure Autism speaks deserves the stature of recognition they get, from the many threads they receive on this site. There are many more organizations associated with autism that are doing good things that deserve recognition as well.

But, I understand why they get it, for the same reason football, politics, and religion are a topic of discussion that goes on forever in the general public, there is a rivarly element in it that many can agree with on to hate.

Hard for human beings to let that kind of thing go, autistic or non-autistic, regardless of what may change within these organizations that people agree to hate.

I would actually say that the focus has been parents of autistics or autistics who are still with their parents even though they are adults.

Obviously both:

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The focus has always been parents. That doesn't mean there are not adult autistics. It just means that the focus has been parents. And it has.

I'm not suggesting, and didn't state that, the focus has ever been on Autistic adults. The focus has definitely been on autistic children and their families, and of course parents are the core elements of the children's family, but that includes brothers, sisters, aunts, uncles, grandparents, etc.

It is focused both on the children and the parents, not just the parents, and not just the children.

Just because one doesn't hear the children, that don't speak talking about their autism, doesn't mean the organization and the parents of those children are not focused on those children, first and foremost.

Given that the parents are the ones with the opportunity to make things different for their children, I don't have a problem with that focus. Right now there a lot of focus on the kids that are growing up, and it is making a STARTLING difference. If investing in families means more independence as future adults, that investment pays off for society in huge ways. While I understand it is frustrating for adults who have been ignored most of their lives and need help as well, it remains the smart place to start. If all of you could have had more understanding parents who understood better their lifetime roles with you, would that have made your current life better? Yes, it would have.

Which is why an earlier poster's comment about the ill-conceived videos was so compelling. In those videos, Autism Speaks failed at their own mission. They need to sear that into their institutional memory so that they don't repeat the mistake.

I do think that as things evolve they will have to eventually turn their attention to services for adults. But the rest of us can fill in that gap now, since small, local solutions are often what struggling adults need the most. The few I've seen do really good work.

The pay scales in that organization are upsetting. I "get" that they are in New York City and pay is going to be high, but I would think they could get a smart and dedicated researcher for closer to 200K than needing to pay 400K. I have a friend who is a well known medical research scientist, and he's always said that one most certainly doesn't do it for the money, although getting "enough" to recognize the high level of education seems to be expected. Still, he isn't looking for his pay to be anywhere near competitive with his other options in life; he knows it can't be. He is a researcher. Being able to have his little house in a decent neighborhood, and being able to save for his kid's college, is enough.

But the issue is that the parents don't understand the concerns or how to make their children independent in many situations, and neither does autism speaks. It's about moulding people in to programmes, all about face value symptoms and not about actually changing lives or actually listening to those autistics that can speak. ASAN exists because autism speaks is a misnomer.

The children rely on the parents and the programs that have been researched and shown to provide the necessary assistance they need. For those that may face permanent disability from Autism, they will rely on society for support, when the parental help is gone.

The research into better treatments and interventions, is extremely important because for those children that have problems expressing their needs through communication, and the co-morbid conditions associated with autism; better treatment, therapies, and interventions may allow them to gain the potential for more independence in life, where they may not have to rely on society for support in their adult years.

This isn't something that autistic adults who can speak, who have no contact with these children, are going to be able to provide to these children, unless they get directly involved in programs to help the children.

The parents, the programs, and society, if support is needed later in adult years, makes the difference whether or not these children can fulfill their potential in life.

The thing one shoud realize is that autism is understood as a partially genetic condition, so many of these parents do have autistic traits, can talk; and are certainly in a position to understand their children as well as anyone else.

ASAN is fighting for rights for autistic people to fit into society, which is good, but they have little to no funding, and have little to no ability to help these autistic children that do not speak, that rely on their parents and government supported programs for their needs.

The ASAN organization has no potential to research and find treatments, therapies, and intervention, that may allow these children a greater opportunity to speak for themselves in life, and gain independence. That's were the big bucks, and funding come into play.

The potential support that may be needed for a lifetime, is something that only the government can fully provide, beyond the resources of parents. Just healthcare alone, is something that no private organization could provide through fundraising efforts.

This makes the research efforts a vital one; future independence for these children, through better treatments, therapies, and interventions, could eventually mean the difference in the ability to subsist in life, in the future, for some of these autistic children.

What is it that you know about how to make anyone independent in situations, that they don't know or that they aren't researching? How isn't the supposed goal of future treatment based on neurological research, something that will change lives?

I prefer the work we parents do here, on the parenting board, with each other and with help from the membership, because our whole goal is to understand first.

But if you want that focus to come into a big organization like Autism Speaks, you have to build bridges instead of walls. I admit, I found it frustrating and not something I had time for, when I knew my own son needed me, and also knew I could quickly make a big difference, on occasion, for parents who find WP, but it still how that change will come.

There is too much momentum in Autism Speaks for it not to continue to be the main charity working with ASD. It's a hard pill for me to swallow, when I see what they could do v what they do do, but life goes like that and being effective usually requires adapting.

my experience with autism speaks at the moment is that it is a fraternity of parents who think their kids are vaccine damaged.

But last I heard their researchers were resisting going down that road saying it is a clear dead end. I thought there was a split over this, and the anti-vaccine folks lost. Doesn't mean that may not be what most of the parents believe, but it is not where the money is going. Not that I follow this closely, mind you - and I do know the parents on their boards were heavy in that direction.

i would definitely say the parents were heavy in that direction. i mean the organization aint all evil but its influenced a lot by quacks and jenny mccarthy boosters. they can't be seen to be moving in that direction but in their articles and particularly front page reports they are always worded to give conspiracy theorists room to interpret them as anti vax.

I see that a significant number of anti-vaccine opinions on Autism Speaks support site from parents continues, however the organization's official stance is that vaccinations have been proven safe, do not cause autism, and children should be vaccinated.

They are still researching underlying biological problems that may cause the onset of symptoms of autism in a minority of children with autism, that do become ill after vaccinations. But, they are not suggesting that vaccines cause the condition of autism, just that the children that become ill after being vaccinated may have an underlying biological issue related to the onset of symptoms of autism, that they are still funding research for.

Some of the people that hold the anti-vaccine opinion are upset at autism speaks because they support current research that proves vaccines don't cause autism.

And some of the people that hold pro-vaccine opinions are upset that Autism Speaks, is still researching anything at all related to vaccines and autism.

It is a well known fact that some children get sick after vaccinations; research continues in children in the general population, to determine why; however, as in the case of the minority of autistic children that get sick after taking vaccinations, the benefits of vaccination clearly outweigh any potential risks of illness after receiving a vaccination.

If the research can pinpoint a biolgocial mechanism as to why some autistic children get sick after taking vaccinations, a method of treatment or intervention to prevent this in happening in children could potentially be developed.

It's a fairly complicated issue, but they can't expect to please everyone with the course of actions they determine are the best ones to take for the future welfare of autistic children, based on the scientific information that is available.

They addressed the statement that some parents still have concerns about vaccines in their official pro-vaccine statement, and they directed those parents to qualified health professionals for advice.

Rather than ignoring them and not speaking to that audience of individuals that still visits their site, it appears to be the wisest advice they could have given, because any reputable health professional will provide the anti-vaccine opinion parents all of the background medical information on why it is vital that their children get vaccinated. It is better that they have face to face interaction with a doctor over this issue, than for Autism Speaks to ignore their concerns.

Thanks for that detailed update.

Your welcome.