why we must be weary of autism speaks

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@aghogday.your a hard person to argue with because you always win.i dont know,if autism is defined as any introvert well then what does it mean anyway.i spent 1 to 2 hours a day rocking back and fourth a day until my early thirties.i define that as autism,i dont know what all the other s**t is.

* i tend to verbose at times so i edited this post for clarity.

Autism Speaks is not the only venue in which both Neurotypicals and Autistics come to access pertinent information. People frequent this forum to read the opinions of Autists and derive their own conclusions. I can tell you, and i say this with all due respect, the depiction of toddlers showing clear characteristics of Autism has little bearing on your ability, as an Adult, to get hired. The latest figures that i am aware of puts the unemployment rate of Autistics between 70 and 80 percent. This astronomical figure has little to do with Autism Speaks; it's a reflection of hiring practices, cultural expectations, and challenges related to an Autistic's OWN condition(s).

Thus, the struggle of the Autist is to become as independent as possible, allowing a certain degree of interdependence with others, and YET refrain from falling into dependence. It's a goal that most groups who have to depend on others for support strive to obtain. Hopefully, those who can't take care of themselves can be helped by Autists and others involved in the Autism community.
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In regards to Neuro-diversity and the Autism community: How can you claim to be the proponents, no forgive me, I'm looking for a more powerful word. AHHHH, yes, the CHAMPIONS of neurodiversity when it's not really accepted in the Autism community ? What do i mean by this??? IF true neurodiversity was accepted in the Autism community, as an original concept, in no way, shape or form mimicking the ideology of neurotypicals THAN pro-cure and anti-cure both would be considered valid options; anything less is simply lip service.

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Commenting on the between US(Autistics) and them(Neuro-typicals) type of Rhetoric as it pertains to self advocates and parent advocates. I will keep my statement brief. When a parent gets ready to search for resources, research options, and plan an IEP for their child; WE do NOT need to be at THAT particular table. ANY parent, any responsible parent, is going to make decisions with regards to their child based on their kid's personal needs and NOT YOURS. IT makes no sense complaining about NOT being invited at the table of discussion when you don't like what the host and hostess(Autism Speaks) are serving on the menu(ABA Therapy and other measures).

Simply, let those who prefer what's on the menu enjoy their proverbial food in comfort and quiet.
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TheSunAlsoRises

Last edited by TheSunAlsoRises on 05 Feb 2012, 3:49 am, edited 2 times in total.

My major point was only a small sliver of autistics are involved at all in this argument. Most of the folks arguing the point aren't even part of the Autistic population that Autism Speaks was addressing in it's early days, when some of their marketing efforts, were found offensive by those whom they weren't addressing.

I'm going to provide a few other ways of understanding it here, if you will bear with me.

The problems of those children and the parents of those children that were addressed at the time weren't pretty but they were real. Those early stories were mostly about the realities of regressive childhood autism. The founders grandchild had this specific condition, and it was the motivation and focus for the organizations existence.

In other words, what you are taking offense to as disrespect, had nothing to do with you as an individual. No one from the organization has provided a representation of Aspergers that has been disrespectful to what the reality of that condition is.

The organization doesn't provide commercials on Aspergers, there isn't a long enough commercial, that could describe what the disorder is. A child with Regressive Autism Disorder that has lost their ability to communicate with the world, is easy to portray, in a commercial, as an issue that requires immediate attention.

Autism Speaks presents a very positive view of Aspergers on their website, but it requires paragraphs of explanations to describe the positive and negative aspects of the condition as opposed to other forms of autism.

Would it have been fair to present a portrayal of a child with Regressive autism, or the specific problems of parents in relation to a child with that specific autism disorder, as a child with aspergers syndrome that could communicate with the world?

No, because at least to this point regressive autism is a specific type of autism disorder that is significantly different from an entire spectrum of disorders.

Autism Speaks gave parents an opportunity to find an ally to support both them and the struggles of their children, with this extremely incapacitating form of Autism Disorder.

It wasn't about Aspergers/HFA. Autism Speaks changed their marketing campaign because higher functioning autistic people expressed that they found those other portrayals of the realities of autism offensive.

Per your link, they presented one of the worse potential despairs of life, a parent that was so lost in the potential despair of the future of their child, that they considered killing themselves along with their child. That's a horrifying thought that was shared publically.

But, it wasn't about aspergers and it certainly wasn't about killing anyone that took offense to it; it was about one of the most horrifying of thoughts a human could imagine.

It was definitely a harsh representation of reality, but there were others that could relate to it, and accepted it as a courageous admission of human fraility. She worked her way out of it and found better days. That's a happy ending, that proves there was no need to act on her irrational thought.

There are plenty of horrors of life that are publically discussed and shared with others, but it is the experiences of others that is at play.

There are no two autism cases that are the same. You can be assured that any portrayal of autism you see in any commercial is not about you, because you are unique; your experience of autism is yours not anyone elses.

But on the other hand whomever is displayed in a documentary or commercial, whether it is an autistic child or parent of an autistic child, owns their own unique experiences of autism and that specific experience as a parent of that autistic child.

You are suggesting that Autism Speaks has disrespected you and others because of these portrayals of autism and experiences of autistic parents in the past.

The fact is that the organization considered a differing opinion that found that portrayal offensive and took the offensive videos off of their main website. So what was that action? One of disrespect or one of respect?

They were under no obligation to remove the videos from their website. They could have ignored the different opinion on the perception of those videos. Their actual financial supporters were not the autistics that found the videos offensive, they were the parents and families that supported and sympathized with the portrayals as presented.

They were more likely to lose revenue by censoring the portrayal appreciated by their supporters, than to gain revenue. But, they did the ethically correct thing to do. That is evidence of respect for a differing opinion not disrespect.

Even, after showing that respect though, years of continued complaints about those issues that were resolved years ago, and a public apology for any offense that was taken, the same old complaints continue.

It appears clear that although there have been complaints of autism speaks as a bully within autistic online communities, even though there is no malicious intent, the general public gains a view of a few individuals in online autistic communities as attempting to bully a charitable organization that is trying to help autistic people, that are perceived as less fortunate in their life circumstances. That seems sadly ironic.

And, the organization is so highly respected in the US, as a charitable organization, that any attempt at a baseless criticism, can easily be refuted by a variety of third party sources that oversee charitable organizations.

The net result is likely free advertisement for the organization, for potential financial supporters, everytime one of these threads continue, with the name autism speaks in the topic title. It's a catchy phrase that is hard to forget. Pretty much a win-win scenario for Autism speaks, and a counter productive effort for those whom unwittingly continue urban myths related to the organization.

The most effective way to take attention away from autism speaks, is to ignore that the organization exists. I had no idea what it was until I visited this forum about a year ago. It only took a couple of searches on google to figure out misinformation was being spread, unintentionally, not much different than gossip at school or work.

Few people have asked any questions or challenged many assumptions, regarding the organization, which has likely snowballed the gossip like aspect of this online autistic community/autism speaks phenomenon.

The recent combined effort between the autism society of America and ASAN, may signal an eventual easing of the conflicts between charitable organizations related to autism the disabling disorder/parents and the online communities composed of some young adults whom consider their conditions identity more than disability.

The truth is it can be both things for the same person at various times through the course of one's lifetime. It's much easier to make a compromise, if one experiences both aspects of it, through personal experience or shared experiences with others. The first step though is to understand that it is not others in society that make an autistic person different. We all own our own unique strengths and weaknesses.

I'd love to see an organization with deep pockets (like Autism speaks) sponsor its own drug research. Specifically, a large-scale re-evaluation of tricyclic molecules from the 1960s-1990s that never made it to market because they weren't good as antidepressants, and whose patents expired long ago.

I'd literally be willing to bet one of my balls that there's an orphaned tricyclic discovered 10-40 years ago that fell through the cracks & would work some absolute magic for ASD executive dysfunction when combined with methylphenidate, amphetamines, or methamphetamine if it were dusted off and re-evaluated TODAY, with an army of adult aspie volunteers to try it and provide rapid development feedback about whether it's a step up or down compared to what they're taking now once the more basic safety studies were completed.

This is the perfect mission for a well-funded organization like Autism Speaks, because these are molecules that will probably never be researched further by drug companies. They aren't going to spend $50 million getting a drug approved by the FDA that would be legally available as a generic from Day One. Just as importantly, they could test them in combination with existing stimulant meds, which is how most TCAs end up getting taken by real-world users with ASD and/or ADD anyway. Drug companies, in contrast, are always trying to get drugs approved as monotherapies. You'll never see a company like Shire say "Our new drug is great, but only if you take it with 25mg of {some other drug made by Pfizer}". It just won't happen, ever. An independent organization like Autism Speaks with a research division wouldn't care about post-approval profitability, so if it discovers that 50mg/day of "Aspiiramine Hcl" works great when taken with Concerta, but is useless (or bad) when taken on its own, it can still pursue FDA approval for it.

The fact is, autism is forever, and finding some better drugs would literally be an investment in the futures of everyone who's autistic. Few will dispute that TCAs can work absolute magic for autistic executive dysfunction, and that they do it better than newer antidepressants & atypical antipsychotics. The only real drawback is that they have some nasty side effects... side effects that one of those orphaned and forgotten-about tricyclic molecules might not have.

When we look at primitive hunter and gatherer groupswe look to essentially what we have been as primates for millions of years.

Just another social primate that evolved to be dependent on the environment, one's physicality, one's wit, and each other for survival, over millions of years.

In the last several hundred years manmade culture has become incredibly complex, stimulating, and hard to understand, even for those that make a living out of trying to understand it.

A collective global human exoskeleton and consciousness that one spends their entire youth in preparation to understand and navigate, that requires increasing mental adaptation through the course of one's life.

Most of what we do on a day to day basis, would have been beyond imagination for our ancestors.

And by the same token even though for the most part we are them, what they did on a day to day basis, is beyond imagination for many raised in modern cultures.

While those of us that were born last century were able to gradually accommodate to dramatic changes in modern culture, children today are born into a full plate of what has resulted from tens of thousands of years of collective human intelligence. With the most dramatic changes in the way we interact with our world in just the last several decades

Just the virtual experience of Television allows one to vicariously live thousands of different lives and experiences in one lifetime.

And we can live entire segments of our lives over and over again through the media we create and the media we have experienced before in our lives.

The fact that we can virtually live in the past and virtually live other lives, is amazing in itself. And all of that was possible in just the last century.

But of course that is only a speck of the cultural changes that a child is born into, with the advantage of neuroplasticity that allows the potential to adapt to a way of life that would have been completely foreign to an ancestor born a generation before.

While our distant ancestors learned life through a three dimensional moving experience. We learn life by constructing it in our minds, largely, through two dimensional sedentary efforts.

My analogy would be that our ancestors forged paths, and we spend our lives learning how to navigate what has become an incredibly complex map.

As long as our collective culture continues to grow, and the way we interact with that culture continues to change, we continue a human experiment of which we have collectively created with all of our ancestors.

We are still homo sapiens by evolution, but our collective intelligence, that has spanned tens of thousands of years, and the process of neuroplasticity has created a superorganism of culture with a mind of it's own, that has become the master of all our minds.

The minds of today are not the minds of yesterday in modern cultures. That is a reality of neuroplasticity. So the Autism of today, is not the autism of yesterday, either.

I suspect the neurological differences behind what is diagnosed as some forms of autism, are strongly associated as a result of modern culture in all it's flavors, and the process of neuroplasticity, adapting to what is. When one is born into it, there is nothing to compare it against, other than what one experiences.

What was once a difference for some, may be an incredibly difficult experience for some now, due to the impact of modern culture, and resulting attempt of neuroplasticity to adapt.

We can't possibly fully understand autism, until we understand how all of our minds are adapting through neuroplasticity to the incredible changes in culture and the way we interact with the world. Since culture itself has gained a mind of it's own, growing larger as a global one, the mysteries of the mind are likely only to become more complex as time goes on.

South Korea is considered as the most technologically advanced culture in the world. Interestingly, measured as having the highest rates of ASD's in the world at 1 in 38, in the recent school survey there. And an online videogame addiction in about half of the young adults that live there, that was so bad that the government censors the internet long enough for sleep at night.

Who could have imagined a phenomenon like this would be possible just three decades ago? Is the superorganism of culture, friend or foe? The answers appear to be coming in faster, than the questions that are going out. That's not too suprising, considering it appears that the superorganism of culture has surpassed the capacity of human control.

It makes one wonder what makes an advanced culture, a complex one that is neither understood or controlled, or a primitive one were the rules are fairly simple, firmly established and commonly understood, as a benefit for all whom are involved, in the common will to survive.

I suspect that some autistics are the proverbial Canaries in the Coal Mine. It's not a fun occupation but it's a role that many organisms play in life.

Autism research is incredibly important, not just to autistics but to everyone else in society. There is potential to learn much more about the human condition, than the condition restricted and defined as a disorder.

Autism Speaks has significant resources to seek out the brightest of individuals to pursue new avenues of research related to the condition. There's too much at stake not to make this effort.

@ahogday it seems you have never heard of the "ransom note" ads. they were sponsored by autism speaks. they ran recently and they were against individuals on the less severe end of the spectrum. they were pretty offensive too. they said that we are captured by aspergers and that this disease is an entity that is preventing us from ever achieving a good life. these notes could make parents overreact to their child's natural autistic tendencies and effect public perception of us.

I meant the 1 in 38/50/110/200/whatever the figure is now group, so, those engaged in the growing Autist culture - the third group you mentioned. That would reach into the second group in quite a few cases, yes. I think it would improve the life of Autists significantly if we can make it clear that Autism does not prevent people from living a fulfilling, productive, and dare I say it normal life. I'm not advocating full separation - at the moment, it hasn't come to the point where that's needed.

Well, the trouble here is that it's more like force-feeding than enjoying a meal. If ABA can be considered to be child abuse, then the government does need to get involved at the table...

I find that the people who are against ABA therapy consider it a form of child abuse. Those who support ABA therapy consider it a god send. The literature that i have read concerning ABA therapy has the treatment evolving overtime and effective when used properly. There are several cases where ABA therapy has been misapplied and a debate continues concerning the use of adversives, amount of hours devoted to therapy, and targeting behavior that may be beneficial to an Autistic child. Again, how is it applied ? and who makes the final determination IF it is applied ?

I speak of, parents sitting at the table and enjoying their meal. Why? Because often-times children do NOT like what's being served at the table BUT they are required to eat a well balanced meal by a responsible parent.


The politics of ABA therapy has supporters presenting the best case scenarios and opponents presenting the worst case scenarios when in all actuality it's probably a combination of the two depending upon the individuals involved.

Now, having said that, behavioral therapy can be vastly improved in a way that builds on the strengths of the Autist. Too often, self advocates look at behavioral therapy as a barbaric method used to try and turn an Autistic child into a Neuro-typical one. Such a plan would be the equivalent of trying to fit a beta tape into an old vhs vcr; folks it just ain't gonna happen.

What can work more effectively is a transitioning from (effective) behavioral therapy to educational exploration.


TheSunAlsoRises

The trouble with Aba is that it ain't clearly defined. It could be anything so it needs to be discussed on a case by case basis.

The only thing good about Autism Speaks is it's name. It brings to mind an organization dedicated to speaking out for people with autism. I think that's what bothers me the most, that they have the perfect name for something that we need so much but they do the exact opposite.

An organization with the name Autism Speaks should be run by Auties.

To be effective, it has to be discussed on a case by case basis. It has to be realized that there exists extremes on the spectrum. For some, ABA therapy is simply tutoring and for others, it's 'behavioral training' derived from behaviorist BF Skinner. Those in the latter group will benefit greatly when Autists become more involved in research and education or simply writing (books that get published and made available to a wide audience) about what helped them. When this occurs, Autistics can move from ABA (Applied Behavioral Analysis) to simply TAAC (Teaching An Autistic Child).

Everyone has an opinion. We all have opinions. People with opinions need to start presenting viable options, in my opinion ; )

TheSunAlsoRises

It kinda IS by proxy of the parents of Auties. AHHHHH, you meant directly by Auties; my bad.

Need a name? Done.

Autism Spectrum Speaks representing those across the entire spectrum:ONE.

TheSunAlsoRises

What you are defining, the modern culture, is autistic. It's rise has been a common theme in SciFi. Village Of The Damned, Children Of The Corn, Childhood's End, we reach the point where change happen so quickly that the next generation can no longer be understood by the current generation.

I was around for the mechanical, from Flat Head Fords, valve in block, through the Drag Strip days when Overhead Valves, other changes, got a lot more power out of the design.

It is said, that trait was the reason America won WWII. When machines of war quit working, Germany sent them back to the factory, France and Italy sent a mechanic from the factory, who had built them, who ordered parts, to be made and delivered. The British just designed a new model, without the known flaws. Which would be available in six months.

The Russians knew the tanks they were building were no match for German Tanks, so they made a lot of them, and some lived long enough to get behind the German Tanks, where they could get a kill shot. Russian tanks were not repaired, they were gathered for scrap metal.

Americans the Sgt. told some grunts fix it. They did, and mounted some extra guns, fuel tanks, and had it working the next day. They were not factory trained, were not mechanics, and only had other vehicles to part out,

The main reason the Germans lost was an old leader who thought the 1894 bolt action Mauser was the finest European weapon ever made, It was good at 500 meters, Not so good room to room in urban warfare.

So we have Grandparents with the finest European Psychology, the best their generation had, trying to identify and cure that Autism Disease.

They will hire Doctors of The Mind to Babble, form The European Mind Council, Partition Autism into Mandates, form Organizations to Rule all factions, and make war on all who want Home Rule.

This is America, we know everyone is nuts, we are used to it, and we are used to change. A thousand people run Washington. They do it by gathering popular support. Our main goal is checking all concentrations of power.

Regressive Autism is a problem, but it is only a small part of a larger problem. Claiming it the only Autism is the One True Religion story.

All of these people will be dead and gone, the current generation will still be here, dealing with Autism, one by one.

I went from self trained motorcycle mechanic, when such things were done by dealers, with factory trained mechanics, to working on room sized IBM Punch Card Systems, for the mechanics were the same. Then I went into European cars, for there were no trained mechanics. 1990 I went back in computers. where mechanical functions were done digital.

I always worked the new tech, where only the self trained survived.

So trying to apply fifty year old European thinking to the current situation in America, is Autism Speaks main problem. B. F. Skinner is old tech.

A lot of us survived, discovered what worked for us and others were blind to. Autism Speaks has never discovered Autism from the inside. Never will, and are blocking the normal chain of development.

There is something defective about all of the people who paid me very good money to fix their machines. I do not wish them cured, I like the money. Even when they object to me making money, I give them the parts, tell them what to do, and leave. Not one has ever fixed their problem.

It is just not possible for some people, the majority, to understand words and concepts, that come natural to me. I have a Differance of Thought and Perception, which is needed to function in the world I live in.

The Cure for Autism has been told many times on this board. We have to do what we do, use our talents, and ignor those who cannot see the world as we do, or how we live here.

Applied Autism is joining those talents, and that is the only world that the new and up and coming autistics will relate to.

Some live in the past, some the present, autism leans toward the future.

Behavior Modification, animal training, can work, if the animal sees value in what they learn. I have trained horses, by reaching out for the perceptions we share, and dealing in ways horses think of value. Once I show I listen, that they can talk to me, and I will act, they get very motivated.

So how would a Psychologist fix a computer or train a horse?

It is likely some do it for fun, and do it quite well. It is also likely that some psychologists are as neurodiverse as many others, and have that same kind of connection with their horses and humans.

It depends on the individual.

And it's also likely that many of those doing the research funded by autism speaks are as neurodiverse as many as well. No one has the key that fits every door. So, in restricting access to anyone, one risks losing the answers that one might not need, but others do.

No, the ransom notes ads, were not sponsored by autism speaks they were sponsored by New York University Child study Center, in 2007, and were associated with Autism, ADHD, Aspergers.

ASAN describes them completely on their website.

This had nothing to do with Autism Speaks. If you hear things from people about Autism Speaks, I suggest you do a google check, to see if it is gossip or for real. In this case apparently you read it or heard it from someone that misattributed the organization behind the "Ransom Notes Incident".

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=21

Research funded by autism speaks could fix the economy, bring full employment, and a faster than light drive, but to date there has been nothing produced, and a lot spent.

A desire to Cure these problems is well and good, but the results so far have been BF Skinner. Perhaps if we used electro shock on those researching faster than light drive, modified their behavior to a constant drive to please the source of shocks, they would produce anti gravity.

Surely it would work as well as getting children to renounce Autism and all of his dark minions. Results have shown promise, perhaps if the voltage was increased?

I see three things, the first being understanding the reality of autism, the second being an understanding of what has worked for prior generations of autistics, and the third being what tools are available, and if they are to be used to aid the natural development, or to destroy all traces of autistic behavior.

From autism speaks I get, we understand the evil of autism, there are no adults, just some frauds on the internet, who do not have a Marketing and Media Empire. Autism is a disease of children, no one with legal rights has it! BF Skinner is peer reviewed Science, that is proven to produce change in subjects, who are subjected to twelve hours a day of behavior modification.

This is the only answer, because we say so!

Being as they do nothing directly, there are no published results, The benefits claimed cannot be measured. Behavior Modification, Drugs, cannot be compared to not doing anything, or doing something else. All that can be learned is, it makes the people selling the services happy.

So what do we call people who are selling Medical Cures without the background, or reviewed results? Quacks!

Now compared to control naturals, who are avoided, all treatments most likely do actual harm. Since the only outcome will be an autistic adult, that is the only baseline, and the place where any modification in childhood should be judged.

Regressive autism does exist, but the point where it is measured, third grade, the delay has reversed, the child is living in the world, and on the path to becoming an autistic adult. Perhaps there are hundreds that remain infants for life, but the measured most afflicted, 1 in 110, are in third grade, and are functioning in the world. In ten years they will be adults.

Autism Speaks is a common pattern. It failed before. Taking Native American and Austrailian children away from their people, and raising them White. Looking for Homosexual genes, for abortion, tests to identify Homosexuals when young and use behavior modification to change them, or tying left handed children's left hand behind their back and forcing them to use the right.

Adults from any of these groups would call that harmful. The idea that a few claim something is wrong with a group they do not belong to, and target the children for experiments, has never turned out well.

Autism Speaks was started as an admitted Eugenics group, with a single goal of eradicating autism in a generation. All of their study was to this end, and only when that failed did they even consider treatment, but still with the intent to eradicate autism.

A few token hires, a new press release, changes nothing, They still turn a blind eye to the millions who live an autistic life as adults. The only change has been with their aging doner base, where they speak of the need for millions of Group Homes. Autism has been a constant part of the population for a long time, we did fit in somewhere.

So a Eugenics Group with 340K supporters, or Millions who will live the Autistic Life decade after decade, who only want an equal shot at Life, Liberty, The Persuit of Happiness?