Autism speaks: Friend or foe?

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Agreed. Thanks for bringing it to my attention. I will edit the remark.

A sociopathic take on this.

I spend time explaining stuff to constrction workers. This is how I would explain this.

This guy turns up outside our site. He's got a big placard and he stands outside the gates holding it up. It's bright green and it has the word "FREAK" on it black writing. This is curious but I don't ask. At work a few guys start acting weird and calling me freak and looking at me funny. The foreman looks at me funny as well.

I go and ask this guy what he's doing. He says "don't take it personally , but I'm a freakologist. It's my job to stand here and call you a freak."

I ask "why" ?He says "to tell you the truth it's one of the only jobs I could get because I'm not wired up to do business and I couldn't hack construction, but this job is good because it pays a load of cash and gives me social status. I can call myself a scientist and we have a nice house." Someone passes by and he says "hey just to let you know this guy's a freak". See, he says, "easy work isn't it?"

The next day I come back with a placard that says, " I am not a FREAK. This guy is nuts," and put it on the safety fencing outside the site.

They guy takes me to court because freakologists have friends who are experts in keeping them in freakologogy occupations , these are called what "you can and can't do according to us ologists".

Apaprently he has copyrighted the word FREAK in this context in order to apply it to me so I can't use it to argue back at him.

I go to court and explain in court that the freakologists sign ie green placard black lettering is a unique symbol
compressing his views and opinions. Becuase they are unique to him the symbol conveys the most exact meaning,
so I have to define the label exactly in order to reject it. I have not profited by using the label , all I have done is prevented myself from being given a rough time at work and possibly loosing my job. I actually have less than if the freakologist hadn't started doing his stuff outside my site.

The freakologist not able to apply the label, goes and stands outside a fast food chain down the road and starts calling someone a freak in there instead.

Meme.

You can't copyright a single word. Well, maybe if it's one you made up (I've no idea on that on), but that wouldn't apply to "freak".

You can trademark a word, but only if it's being used as a trademark. Which doesn't apply to "freak" in your story, but does apply to Autism Speaks.

(How that applies to parody sites I don't know, and I'll leave that discussion to others.)

i support them even if some of their messaging is a little off. they could have chosen their name better, thats for sure.

i don't understand why people here don't try to improve. that is what autism speaks is about -- trying to gain improvement. i think anyone who wants to be in meltdown city all day long and have no friends is pretty silly.

and if autism speaks can help figure that stuff out then its a good thing.

I just made up Freakologist and applied it in this context. Tell them I might sue if they quote me. It's second guessing game.

Of course they Aspeaks might be trying to draw opponents into court to try to cause finacial damage to them having worked out in advance they have a series of strong cases.

Organizations are very sneaky like this and some lawyers do make a living out of riding on situations where one group claims against another.

Be very wary.

Meme.

When I said "made up word", I did NOT mean by standard English language morphological processes using existing morphemes. "Freakologist" is definitely not copyrightable. Especially since it's been created previously. (Google it). What I mean is gibberish words, as part of a larger work. (And I didn't even say they can be copyrighted, just that I honestly don't know.)

And, even when copyright applies, there's the fair use thing.

Not sure if you saw my previous post, but Autism Speaks didn't take any action against the individual using the Phrase Autism Speaks on the T-shirt. That was a misunderstanding that still circulates on the internet but was proven not true years ago.

The NT speaks parody issue is more complex because it involves the layout of their website that includes both copyrighted information and trademarks and a determination on whether or not the parody met the standards of US law on fair use. As I said before, I reserve an opinion on it, because I do not have access to the parodied website that was in question.

It's a matter of opinion on whether or not Autism Speaks had a valid reason for concern over the issue or whether or not they didn't like the criticism; I think one would need to understand the laws on fairuse and parodies and see the website to make an objective opinion.

Mysty and ahogday, I'm sorry I'm being a bit flippant about this . It seems crazy some guys can stick a label on another bunch of guys with such a negative spin. One act of resistance is to collectively use humor to break it down, like detergent on an oil spill. The point is, you don't have to accept a label if you feel there is no justification to it. This label is a product of big buisness interests and contains some degree of help to the individual. This need to be separated out and if some guy wants to try to label me as a pathological diseased entity to pay his or her mortgage
then the risk they take is they get challenged on this.

I'm not a freak or a pathology or a disease. I don't need combating. I don't require removing from the gene pool, nor do my descendants. Evolution put me here, it wants me here. If anyone tries to tell me it doesn't then they are fair game for lampoon humor and everything else that gets throw at back at them. Nature's payground rules.

I'm just annoyed with their scare tactics and over dramatization about this disorder. (Think of the 'I am Autism' PSA or 'Autism Everyday' film as examples.) They only speak negatively about the disorder. There's never anything positive. It kind of ruin's your (for those on the spectrum) self esteem when your portrayed so negatively because you have autism.

If they were more positive I wouldn't have a problem with this organization.

I've seen commercials for Autism Speaks on TV & they make autism sound like it's a disease that is rapidly getting worse. Also the people in those commercials saying how someone they know got diagnosed with autism look & sound like they aren't normal either. I do NOT trust em

[youtube]http://www.youtube.com/watch?v=_J3VOorRcU8[/youtube]

I don't agree with everything Autism Speaks has done as an organization, but they have nothing to do with any problems I had in my life, and never will. They have absolutely no effect on our lives, if we don't see them as a source of support. However, we can certainly disagree with them if we like.

Regardless if there was no diagnosis and no words ever to describe our differences, we would still have the same lives with the same issues among those that are different from us, giving us problems and not accepting us for who we are. It's a result of being a primate; while we like to think we're civilized as a species, it takes a conscious ethical effort for people to overcome the primate instinct to shun those seen as significantly different.

Do you really think Autism Speaks has a real measurable impact for those people that function in life undiagnosed with Autism? I'm not sure how it is in the UK, but most of the people over here, other than someone who has personal contact with someone that has the dibilitating effects of Autism, have no idea what Autism Speaks is, and could care less.

More people probably know about autism through Jenny McCarthy, Rainman, John Travolta, Doug Flutie, or the "Combating Autism Governement supported initiative here in the US. I never even heard of Autism Speaks until I got on this website.

The really big bucks to research autism are coming from the Government, in their effort to "combat Autism", but please understand they are not combatting you as an individual, they are targeting the debilitating impact that Autism has on some children that last an entire life; the people that support this don't see Autism the way we see it in ourselves, they are thinking about the child that never speaks, or will require constant support their entire life.

"Autism Speaks" is not much different than the phrase "Wrong Planet"; it's descriptive of the problems associated with it, in hopes that those that cannot speak will be better understood and one day have the ability to speak, if possible.

In our case a world that is not so welcoming, and for some others it is a world where they cannot speak. Maybe I can relate to the phase more than some because I have experienced problems with speech most of my life; now more than ever, since I was a child with no speech.

I'm sure you understand that while not all children suffer with autism some do. And as a parent that had a severely disabled child, I can tell you there is nothing I wouldn't have done to alleviate the suffering my child endured if had any avenue to do so.

The combating Autism funding in the government and Autism Speaks funding is the avenue these parents and friends of family support; it's the only hope that some of them have for a better life for their child. No one is going to convince a parent that their child that is suffering does not deserve a cure or improved methods of treatment, no matter how slim the chances are one will be developed

Imagine seeing a child banging his head on the wall because of sensory torture, not from vision or sound; just from being alive trapped in a body fully aware of what was going on, not being able to communicate the misery the child was enduring.

These are the accounts given by some autistic children that have gained the ability to communicate through keyboards through intense positive reinforcement techniques required for the focus to use a keyboard.

It's worth a second objective look in my opinion, to see other perspecties, for those that haven't been exposed to them. Not likely that everyone will be happy with what I am saying here, but I think of my disabled child or the potential disabled child, not inclusive to Autism, that anyone reading this that plans to have children may have, understanding how many perspectives in life change with that experience.

In general high functioning Autistic people don't support Autism Speaks; in general they don't have the resources that parents and friends of autistic people have. The parents won't tolerate general offensive comments about the realities of the depictions of the problems of their children or what may seen by some as parenting that is not good enough.

This is the kind of thing that Autism Speaks will silence on it's website; it's the last thing a parent who goes for support there needs to hear, it's not just offensive, it can be emotionally damaging.

I've heard many comments here that highly functioning Autistic people understand what the autistic people need that can't speak better than the parents do. They indeed may have a better idea of what sensory torture means, but if they can communicate neither they or the parents can possibly understand what that's like for the child, until the child gains the ability to express the difficulties they endure.

Not likely that anyone would ever tell a parent to their face that they understand their child better than the parent does, regardless of what issue the child has; parents tend to be protective as I'm sure you understand as a successful parent.

The only potential real issues of concern that I can see that some have are the development of a prenatal test and forced treatment on those that don't want it. It won't be an issue for highfunctioning adults here in the US, we have a right to go without treatments as we see fit.

And, my first intention to post here, was to allow people the understanding that the research that Autism Speaks funds has resulted in information that suggests that the environment plays a bigger role than genetics in Autism, through twin studies. And, that this research makes the likelyhood of a genetic prenatal test less likely. Recently there has been some heightened concern over this because a postnatal genetic test has been developed.

You may already understand all of this, but I'm not 100% sure that everyone that may read the post already understands the other perspectives involved.

And I'll take the opportunity to present the perspectives over and over everytime I have an opportunity to express the opinion in a new thread like this, because new people constantly come through. Rarely are any supporting objective factors presented at times, such as when the T-shirt incident is presented, that would continue to be accepted as truth, although autism speaks direct involvement was stated as false by the individual that first reported it almost 3 years ago.

Ahogday, you deserve a longer reply . Please try to see as a parent I appreciate what you went through with your child. Mine weren't exact blue skies and roses all the time so respect and understanding from me.

I can't agree with an organisation labelling your child or my children as a pathology or a disease first and human being second. This is not acceptable. At this level its corporate branding, and its the negative content of that branding I'm opposed to. It doesn't help anyone.

What happens if we get a less benign form of government, one with some kind of genetic eugenics agenda say twenty years from now, these kind of values will be useful to them to argue removal of us from the genepool, then we're back on the slippery slope to Brandenburg Clincs with brightly coloured walls and soft toys and staff that believe they are doing the right thing, in whatever form this nightmare is ressurected.- That is a metaphor- think of what insurance companies will do , and all these other groups in who'se interest it is to take this brand label and use it. the problem is excacerbated when you have a series of loosely intergrated organisations driven by profit acting against the fundemental human interest of the individual.

I There is need to separate the postive aspects of the work being done by Aspeaks from the label and branding they have developed because it influences how people respond to us especially when it is the dominant influence.

It must be different in the UK, because the only influence Autism Speaks has in the real world here is getting funding to research the mission supported by those that fund them and a greater awareness of the problems associated with Autism. Most here already knew what the negative aspects were from Autism long before Autism Speaks came into the picture, or before anyone even understood that there was a form of Autism that wasn't as debilitating like Aspergers. Aspergers has been understood here as a condition that is different, although related.

If a person does not have debilitating effects from the symptoms of Autism or Aspergers, I don't see a compelling need to get a diagnosis. I would have never gotten a diagnosis, if it wasn't for co-morbid issues developed later in life. But, again that is here, I can't judge what it is like for people in the UK. Autism Speaks could disappear off the map tommorrow, with little effect on any of the perceived positive or negative impacts of Autism Speaks here.

The funding dollars for research are still there from the Parents and friends of Children that have the more debilitating issues related to Autism, there are many other avenues they would pursue to fund the same research, and the same kind of marketing techniques to provide awareness of the problems with Autism that are seen to need a fix would be provided by the other sources, including the government.

Autism/Aspergers is a group of symptoms that psychologists have labeled as a disorder that is seen as an impairment that can be disabling for some. A person gets no psychological label until they go into see a psychiatrist for an examination to determine whether they have a disorder that is an impairment in a major area of functioning in life.

Autism Speaks and the Government look at the symptoms of Autism that are debilitating and focus on those debilitating symptoms in finding ways to allow a child to have the best life possible. I understand not everyone agrees that there is a problem that needs a fix, but the majority here in the US see it as a problem that needs to be fixed for the child to have a better life.

I didn't like the one "I Am Autism Video" that has been played on the internet as a complaint against Autism Speaks, however it was produced for a specific conference of people keyed in on Kanner's type Autism, years ago, and not meant for the mainstream public. Although the video was received with positive comments from the group it was intended for, others saw it and were offended, and Autism speaks promptly removed it from their website. When people show the Video, the rest of the story regarding the Video is often not presented as is with the T-shirt story.

I saw it as over the top, certainly not something an individual would want their child with Autism to see, but again, it wasn't intended as a mainstream advertisement for the general public here.

Most of the specific complaints, I still hear in regard to Autism Speaks are issues that have been addressed and resolved years ago. All that seemed to be left was the fear of the prenatal test, and that is becoming a non-issue also.

In regard to Eugenics, the research Autism Speaks is funding regarding environmental impacts on Autism, is making it close to impossible for a prenatal test to be developed. If we ever get a government that goes against respected scientific research, it won't have anything to do with Autism Speaks.

No one can hide the real problems associated with Autism. If as a result of Autism Speaks research, the more debilitating symptoms of Autism can be eliminated by reducing exposure to environmental factors that may cause them and allow an individual to have the quality of life that you and I have had, I can't see any problem with that; that is what I would hope for any child.

I've heard some stories from the UK about the government taking away children from parents that have Aspergers because they are not seen fit to take care of children.

That's not legal here unless there is evidence the parent cannot take care of the children. If that does indeed happen there the perception of problems with diagnostic labels may be very different there than it is here, and I respect that. If I lived where you do, my perceptions on these issues could be closer to the concerns you present, that I am not seeing from what I have experienced here.

You probably understand much of this and didn't need a re-hash, but again as in the last post, I am also providing it for the people that may be interested in hearing additional perspectives on the Autism Speaks controversies.

Thank you all for your replies. After reading through them the issues people seem to have with the are:
• They act more like a large coorporation than a charity to help people. They are quick to silence criticism with the threat of legal action, using copyright laws to silence free speech.

• They are set up to support parents/carers, with nothing aimed directly at autistic people themselves. A bit like standing next to two people talking about you as if you're not there.

• The name: Autism speaks. They don't appear to let autistic people speak for themselves dispute the name.

• They are looking for a cure for autism. People find this offensive as some do not want to be cured, and a search for a cure makes them feel more alienated as as it suggests they're not allowed to be so different.

• They are trying to make prenatal tests for autism. This may cause parents to abort the pregnancy (here in uk people are offered abortions for feotuses found with downs syndrome). This is dangerous ground as having autistic genes may not mean you develop it, determine how severe it will be, or that you won't end up happy wherever you are on the spectrum.

• They only focus on the negative side of autism and can be overly dramatic with this. It's a disease that needs to be cured, must be combated as it's getting worse etc. For people on the spectrum this can ruin self esteem when they are alwYs portrayed so negatively and seen as a problem, not a person.

Is that everything? I'm also going to make a list of pros if anyone would like to add anything positive.

The number of positive impacts Autism Speaks is making for the Autistic Community as a whole are clearly identified on their new website.

There is nothing but firm postive enthuisiasm to provide help for all people in the Autistic community; they have many new initiatives for adults of all functioning levels with Autism to provide assistance in gaining employment and/or to have the best possible life with better services within the community, including a push for new legislation in the goverment that will help with the funding.

I've checked out their website a few times since I have been here; each time I go there I see more positive images of Autism as a condition that they are helping children and adults adapt to, to have a better life, and many additional avenues Autism Speaks is providing for everyone on the spectrum to have improved resources for information. It is obvious that the influence of people like John Robinson are making an impact on the organization.

Those with more disabling symptoms may benefit from the current research that is showing the debilitating symptoms of Autism to be influenced more by environment than genetics, making an accurate prenatal genetic test for Autism close to an impossibility, and possibly eventually providing an understanding of the environmental factors that can be changed to reduce the likelyhood of a person with the propensity for these more disabling symptoms from developing them.

It is clear that as an organization they have listened to the legitimate concerns of a need for assistance for higher functioning autistic people and are making that a larger part of their mission. There is nothing demeaning on their website about anyone with Autism; all the images are of positive enthusiasm. The objective facts they present on autism are sourced by reliable information from the professional and scientific community.

Most of the issues with the organization are issues of the past that have been resolved. It is evident that Autism Speaks can learn from legitimate criticism and continue to evolve as an organization.

In visiting their new website it is clear that they have listened to the concerns of higher functioning autistic people and have made many of the changes that were asked for.

The best way to understand what they are doing now, is to go to their website; it's a brand innovative design; see how they have evolved as an organization in response to input that higher functioning autistic people have provided to improve the organization. It's much different now than what it has been in the past.

You might find some useful information there, that you won't find anywhere else. That seems to be what they are aiming in providing everyone on the spectrum.

In fact, I challenge anyone to find a better informational site on Autism, and living with Autism, that has a more positive message as a whole. I wouldn't have said it before the new website design, but in my opinion it has close to the fairest approach to the whole spectrum now, that I have seen on any website providing objective Autism information.

http://www.autismspeaks.org/news

I think the simple answer to the question as whether or not they are friend or foe, is to look at their website and see if there is evidence that they have listened to legitimate concerns and judge for yourself as to whether or not they are responding to what people are asking for.

I view them as the foe due to the things which they did years ago, if they wish to change and clean up their lives. Then I saw good !

But they need to confess their sins and then amend their lives. I think that the church got it right when they said that a person needs "absolution and remission of all sins, true repentance, amendment of life". I think that in the case of autism speaks they need to do something to show us that they are seeking "amendment of life".

They need to get rid of the jigsaw, I do not like it one bit.

I am not broken and I do not need fixing (turning into a NT), I say it is my moral duty to resist with every part of my body and mind all attempts to force me into an ill-fitting hole !

I say down with the jigsaw !

I am not a jigsaw, I am a free man !