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Verdandi
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15 Nov 2013, 4:55 pm

Feralucce wrote:
The blogger has a passionate stance on the subject... and that may very well be what puts me off about the style... I am passionate, but relatively withdrawn from it (again, an issue that I have and do not put on anyone else)... When passion interferes with a logical discourse, I am automatically, through personal experience, disposed towards walking away from it... partly because excessive passion interferes with intellectual intercourse, partly because most (please note the careful word choice of MOST) people who are that fired up cannot leave the passion to the side and are irrational about their cause... and I have little room or tolerance for irrationality... Again... this is my issue, and no one else's


Then read John Elder Robison's post on the topic:

http://jerobison.blogspot.com/2013/11/i ... peaks.html

Also, your characterization of her post is as "irrationality" is inaccurate.

Quote:
However, I would like to point out that such impassioned positions rarely, if ever, make a difference in the united states... Autism speaks is a private organization, and as much as I hate to say it... as long as they are not breaking any laws in the pursuit of their goals, we have little, if any recourse... and honestly, we have no input or say as to how they will proceed... While the nature of the group has changed in the past few years, I do not want them speaking for me... but our opinion will not change it.


This entire paragraph is wrong. Impassioned positions have made a difference many many times in the United States. It is a false yet often repeated misconception that the appropriate way to seek change is to be as polite as possible, but the reality is that change is often prompted by impassioned positions. In fact, I would argue that the US was founded due to "impassioned positions" taken by the American rebels in response to British rule. Or would you say that a war is a purely rational response involving no passion at all?

As far as the bit about Autism Speaks not breaking laws, this is wrong because you are allowed to criticize people even when they are not breaking the law. Since Autism Speaks purports to represent autistic people and families of autistic people, then it is in fact quite appropriate for autistic people to provide input and criticism in response to how AS engages in that representation.

What you wrote makes sense in the context of someone knowing basically nothing about the history of political activism, but in order to actually discuss activism, one needs to actually know things about it.



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15 Nov 2013, 5:11 pm

aghogday wrote:
Feralucce wrote:
PaulaDurbin-Westby wrote:
My blog post on this. I have copied in links to every protest article I can find, including links to the WP threads on the topic. Updating any time I have a break and can do searches.

http://paulacdurbinwestbyautisticblog.b ... ummit.html


There may a great deal of useful information there... but your presentation made it a) impossible to read in any meaningful way amd b) to take it seriously



With the real deficit of demonstrated and understood cognitive empathy that handicaps many people with Autism..they simply don't get it that is all..

But the funding must go on..and as anyone who has ever taken a marketing 101 class in college or even high school knows..the emotions are what pull the levers for emptying the pockets..whether it is buying new cars..or saving someone's life who may be impacted by a deadly co-morbid disease associated with Autism...

But again..the problem is empathy and Autism..no matter how many words I use to attempt to explain this in plain language..people with empathy deficits..per demonstrated empathy and cognitive empathy..for the most part..simply are not going to get it..until they reach some type of mechanism to adapt through epigenetic..and/or neuroplastic changes in their brain...

I didn't always get it..it took me decades...but it is as clear as day now..even though so many others are still blind to the empathy that most people in the general public experience that most definitely do still support the full mission of Autism Speaks..and truly understand the real suffering associated with Autism..empty some of the 'coins' out of their pockets to help other people..simply cause they are human and need help...

Autism Speaks generated 10% more revenue last year..than the year before while most other charities are either faltering..and some are either failing..

This is what happens when an extremely successful CEO of a major Network..dedicates his retirement years to philanthropy..

They simply make things happen..to help others..

And we need more people like them..to make this WORLD really work...

No matter the pedantic language flaws that Suzanne Wright or her husband may make in their emotional pleas for help from the government and the general public..their hearts are simply in the human place of using their human efforts to help other humans..

This is what it means to be a social animal..and yeah..many autistic people have trouble being a social animal..

That is why the disorder can be so devastating..

The only reason humans have survived this long.. is because of the adaptations for reciprocal social communication..to effectively..share..and cooperate...for basic subsistence and survival...

That is the big picture oF autism...and yeah it is a dire one..for survival for ALL those who are concerned...

Autism
Speaks is great..it started out as a volunteer effort...
Not many people have what it takes to make something like that happen!

And no I am not silly enough to think I am going to change any rigid thinking views of the Autistic folk here..but this is just to show the listening audience who are not autistic..that some of us do adapt..understand..and demonstrate human empathy .. in words...


We have cognitive empathy deficits but not emotional ones so we can feel for her grandson and the difficulty of raising him. Anybody that jokes about her grandson does have a touch of evil. I do feel she thinks she is doing the right thing and I dealt with that in another post in the general autism section.

I have taken Marketing 101 and a bunch of other Marketing and Marketing research courses so I understand emotional manipulation is effective in parting money from people. What is dead wrong is using the fact they are good at marketing and emotional manipulation as a reason as to why they are good. It is what end it is used for. Using the money to try and find the New York autistic boy who ran away is a good thing. Using it to further the belief that those think differently are not social as diseased or disordered and using said money to find a vaccine to get rid of personality traits caused by it is wrong. The money would better used to learn how to teach them, to learn how to communicate with them and have them communicate with you. Those that are not social are not disordered or wrong, although because of the difficulty they have it in life it is reasonable to come to that conclusion. They have difficulty in life because they are a small minority. That is it no more and no less, no right or wrong involved here.

Maybe the social animal majority world you seem to love is wrong. Look at our world just look at it.


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15 Nov 2013, 5:32 pm

ASPartOfMe wrote:
aghogday wrote:
Feralucce wrote:
PaulaDurbin-Westby wrote:
My blog post on this. I have copied in links to every protest article I can find, including links to the WP threads on the topic. Updating any time I have a break and can do searches.

http://paulacdurbinwestbyautisticblog.b ... ummit.html


There may a great deal of useful information there... but your presentation made it a) impossible to read in any meaningful way amd b) to take it seriously



With the real deficit of demonstrated and understood cognitive empathy that handicaps many people with Autism..they simply don't get it that is all..

But the funding must go on..and as anyone who has ever taken a marketing 101 class in college or even high school knows..the emotions are what pull the levers for emptying the pockets..whether it is buying new cars..or saving someone's life who may be impacted by a deadly co-morbid disease associated with Autism...

But again..the problem is empathy and Autism..no matter how many words I use to attempt to explain this in plain language..people with empathy deficits..per demonstrated empathy and cognitive empathy..for the most part..simply are not going to get it..until they reach some type of mechanism to adapt through epigenetic..and/or neuroplastic changes in their brain...

I didn't always get it..it took me decades...but it is as clear as day now..even though so many others are still blind to the empathy that most people in the general public experience that most definitely do still support the full mission of Autism Speaks..and truly understand the real suffering associated with Autism..empty some of the 'coins' out of their pockets to help other people..simply cause they are human and need help...

Autism Speaks generated 10% more revenue last year..than the year before while most other charities are either faltering..and some are either failing..

This is what happens when an extremely successful CEO of a major Network..dedicates his retirement years to philanthropy..

They simply make things happen..to help others..

And we need more people like them..to make this WORLD really work...

No matter the pedantic language flaws that Suzanne Wright or her husband may make in their emotional pleas for help from the government and the general public..their hearts are simply in the human place of using their human efforts to help other humans..

This is what it means to be a social animal..and yeah..many autistic people have trouble being a social animal..

That is why the disorder can be so devastating..

The only reason humans have survived this long.. is because of the adaptations for reciprocal social communication..to effectively..share..and cooperate...for basic subsistence and survival...

That is the big picture oF autism...and yeah it is a dire one..for survival for ALL those who are concerned...

Autism
Speaks is great..it started out as a volunteer effort...
Not many people have what it takes to make something like that happen!

And no I am not silly enough to think I am going to change any rigid thinking views of the Autistic folk here..but this is just to show the listening audience who are not autistic..that some of us do adapt..understand..and demonstrate human empathy .. in words...


We have cognitive empathy deficits but not emotional ones so we can feel for her grandson and the difficulty of raising him. Anybody that jokes about her grandson does have a touch of evil. I do feel she thinks she is doing the right thing and I dealt with that in another post in the general autism section.

I have taken Marketing 101 and a bunch of other Marketing and Marketing research courses so I understand emotional manipulation is effective in parting money from people. What is dead wrong is using the fact they are good at marketing and emotional manipulation as a reason as to why they are good. It is what end it is used for. Using the money to try and find the New York autistic boy who ran away is a good thing. Using it to further the belief that those think differently are not social as diseased or disordered and using said money to find a vaccine to get rid of personality traits caused by it is wrong. The money would better used to learn how to teach them, to learn how to communicate with them and have them communicate with you. Those that are not social are not disordered or wrong although because of the difficulty they have it in life it is reasonable to come to that conclusion. They have difficulty in life because they are a small minority. That is it no more and no less, no right or wrong involved here.

Maybe the social animal majority world you seem to love is wrong. Look at our world just look at it.


As far as the diagnosis..goes..as Autism is an abstract construct anyway..some people with autism have deficits in emotional empathy and some have difficulties in cognitive empathy..and some people have neither as it is not a mandatory requirement for an autism spectrum diagnosis..to date..other than difficulties in reciprocal social communication..that can be measured by behavior alone..

But studies do show..a difficulty in brains scans among people on the spectrum with the actual part of the brain ..that is associated with emotional contagion..specific to Alexithymia..which is prevalent in about 85% of diagnosed autism cases...

The opinions provided on this site as a whole are skewed..and everywhere else online as there are many people on the spectrum who would never put themselves in a position to communicate with the general public in writing or in real life..to voice their opinions..so they simply have no voice..and Autism Speaks does provide support for many of these people...

Autism speaks is clear on the fact that there are people on the spectrum who do very well and are not seriously disabled..but the fact is that many people on the spectrum have serious life threatening co-morbid conditions...

This is the reality that Autism Speaks addresses most..for obvious reasons..as they are the ones..who are in a much more life threatening situation per actual health problems associated with Autism...

Autism is extremely complex..there are scores of genetic disease..mitochondrial dysfunction..immune system issues..and the list goes on..per serious health problems that people on the spectrum suffer from..

Many of those people need all the research that can be done..for any hope for a healthy life...

This is the cognitive part of empathy my friend..understanding the facts associated with what other people experience and suffer with other problems than we do...and putting that together with the emotional empathy that makes us fully human...

It's really not hard in my opinion..to clearly see that this is simply what autism speaks has been doing and is doing...

And some people online are simply trying to throw roadblocks at them..that in reality are like fleas in real effect...

Otherwise the organization would not continue to thrive with 10% increases in revenue..to really help at least some people on the spectrum in REAL LIFE...

There are quite a few sociological studies that show that for an online community to continue for success that a common enemy is often generated to provide this type of bond..success..

IN real life there is simply no rational reason to fear anything that Autism Speaks does..

If a person misspoke about a fact..or said something that someone did not agree with..It is not the frigging end of the world...

But..EH...hate bonds..not as good as love..

But for some hate is an effective online tool for community..bonding..most sadly in my opinion...

If one goes to Autism Speaks Facebook page..it's all about loving children..with autism..It's clear to see...

A child can be unconditionally loved no matter what their problem...is...and compassionate parents..do treat their children this way..

The folks at Autism Speaks are extremely compassionate about human beings..they just do not want to see people suffer from the real devastating issues associated with many forms of autism..

It's great if you are one of the fortunate ones that do not suffer..but that does not eliminate any problems for those that do..Rhetoric is nothing..action is everything...as far THIS goes...in the REAL FLESH AND BLOOD WORLD....

Again..in my opinion..only...is all THIS IS...


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15 Nov 2013, 8:02 pm

You are seriously using financial means gained by emotional manipulation as a measure of good or bad. By your logic this makes Bernie Madoff a superhero.

"everywhere else online as there are many people on the spectrum who would never put themselves in a position to communicate with the general public in writing or in real life..to voice their opinions..so they simply have no voice.."

Which is why I said I favored the money to be used to find ways to communicate with these people so we know how they feel about having their brains vaccinated instead of vaccinating them first. If Autism Speaks was interested in communications and giving people a voice they would put autistic people on various places in the the spectrum in leadership and policy making positions since they were autistic children at one point in their lives. But since autistics may not have money and think logically rather then emotionally that does not count by your and their way of thinking. While there will always be haters online that would be a REAL WORLD ACTION that would ameliorate a lot of it. . They have continuously refused repeated requests to do this. They have repeatably put language that actual autistic people thinks is demeaning and offensive. Yes people do misspeak, things come out the wrong way as autistics we understand that as well as anybody but when it constantly happens it logical to believe that is what they believe.

When I look at the rhetoric, the lack of autistic making decisions, and their money and power those are REAL WORLD ACTIONS to fear them in my opinion.

Because one loves someone does not mean they will do right by them. It is just that emotional attachment that can lead to wrong solutions. It can lead them to smother people with their love.

"It's great if you are one of the fortunate ones that do not suffer"
Excuse me?
Fortunate yes, suffer a lot less the others on the spectrum yes, a nice tool to invalidate my opinion yes.


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Verdandi
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15 Nov 2013, 9:17 pm

aghogday wrote:
As far as the diagnosis..goes..as Autism is an abstract construct anyway..some people with autism have deficits in emotional empathy and some have difficulties in cognitive empathy..and some people have neither as it is not a mandatory requirement for an autism spectrum diagnosis..to date..other than difficulties in reciprocal social communication..that can be measured by behavior alone..

But studies do show..a difficulty in brains scans among people on the spectrum with the actual part of the brain ..that is associated with emotional contagion..specific to Alexithymia..which is prevalent in about 85% of diagnosed autism cases...


And of course you can use this to discredit people who disagree with Autism Speaks and criticize its policies, but you can't be bothered to extend this critique to yourself and your heavy-handed attempts to shut people down when they depart from your favorite party line - that is, the one that involves telling autistic adults that their voices are irrelevant because Autism Speaks has a lot of money and totally does research guys,. :roll:

Quote:
The opinions provided on this site as a whole are skewed..and everywhere else online as there are many people on the spectrum who would never put themselves in a position to communicate with the general public in writing or in real life..to voice their opinions..so they simply have no voice..and Autism Speaks does provide support for many of these people...


What's skewed is your perception that this animus toward Autism Speaks is confined to this forum. The critical perspective of autism speaks that you constantly denigrate because you have no logical or rational rebuttal to it is based in a general attitude toward how advocacy happens for autistic people and who gets to be heard. You will find many familiar sentiments in this article Jim Sinclair wrote 20 years ago:

http://www.autreat.com/dont_mourn.html

You seem to think that all of this is recent and only reflects attitudes expressed by representatives of Autism Speaks when in fact it has been going on for quite some time.

Quote:
Autism speaks is clear on the fact that there are people on the spectrum who do very well and are not seriously disabled..but the fact is that many people on the spectrum have serious life threatening co-morbid conditions...


And this is where you dismiss the fact that many people who do not fit into the stereotype of "low functioning" are also sometimes seriously disabled. Or rather, you fail to address it entirely, creating this false dichotomy where it's either autistic people who can't speak for themselves whom Autism Speaks is advocating for (Autism Speaks isn't actually advocating for them) and then the rest of us who are "doing very well and are not seriously disabled." This isn't a real separation, but rather a description of two possible presentations/outcomes with significant amounts of overlap.

Also, you say this as if co-morbid conditions like major depression are not themselves life threatening (spoilers: They are).

Quote:
This is the reality that Autism Speaks addresses most..for obvious reasons..as they are the ones..who are in a much more life threatening situation per actual health problems associated with Autism...


I haven't read anything from Autism Speaks that indicates this is the case. What they talk about is autistic children having meltdowns, not speaking, presenting the stereotypical "low functioning" image of the autistic child and then speaking as if every autistic person fits that mold. That is, until someone points that out at which point they say "We don't mean you" even though their demographic declarations make it clear they are referring to all autistic people including children and adults. You're trying to pull this same ploy with the false dichotomy I mentioned above.

Quote:
Autism is extremely complex..there are scores of genetic disease..mitochondrial dysfunction..immune system issues..and the list goes on..per serious health problems that people on the spectrum suffer from..

Many of those people need all the research that can be done..for any hope for a healthy life...


Looking at their research, they only fund studies that fall into these categories:

Quote:
Autism Speaks research funding will be restricted to projects that address one of the following
priorities:
 Identify risk factors for ASD that can lead to prevention and improved diagnosis and treatment
 Reduce age of detection and improve access to early intervention for children with ASD
 Enhance quality of, and access to, medical care for individuals with ASD
 Promote the development of safe, effective interventions and medicines to reduce core and
associated symptoms of ASD throughout the lifespan
 Improve the health and outcomes of adults with ASD from a lifetime perspective

Examples of types of projects that would be relevant include, but are not limited to, the following:
 Biomarkers, genetics, genomics and their clinical utility
 Environmental risk factors and gene-environment interactions
 Preclinical research aimed at understanding pathophysiology, target identification and validation,
including immune mechanisms in autism
 Clinical characterization, stratification of clinical samples using gene-phenotype algorithms
 Novel Treatments
 Effectiveness studies and dissemination science
 Biorepositories and bioinformatic support, and other resources to accelerate research

IMPORTANT: The relevance of the proposed research to ASD and Autism Speaks’ research
priority areas must be explicitly described in the Letter of Intent (LOI) and full application.


http://www.autismspeaks.org/docs/scienc ... -30-13.pdf


Quote:
This is the cognitive part of empathy my friend..understanding the facts associated with what other people experience and suffer with other problems than we do...and putting that together with the emotional empathy that makes us fully human...


Something you seem to not be doing as you're inventing a lot of "facts" about people who are critical of Autism Speaks, and don't seem to have the least amount of sympathy for any criticisms.

Quote:
It's really not hard in my opinion..to clearly see that this is simply what autism speaks has been doing and is doing...

And some people online are simply trying to throw roadblocks at them..that in reality are like fleas in real effect...


Citation needed.

I agree it isn't hard to see what Autism Speaks has been doing and is doing, which is why I don't believe a word of your claims. ESPECIALLY since you have repeatedly tried to shut down critical discussion of Autism Speaks

Quote:
Otherwise the organization would not continue to thrive with 10% increases in revenue..to really help at least some people on the spectrum in REAL LIFE...


Okay, this argument doesn't follow. Hate groups such as National Organization for Marriage and Focus on the Family receive donations to support their campaigns against LGBT people. Stormfront is funded by donations. There is literally no argument that earning money (especially by the emotionally manipulative tactics that Autism Speaks uses and you not only approve of, but replicate on this forum) translates to virtuous motives or actions. I'm sorry, but you need a much stronger argument than that.

If anything, it's a sign of how lopsided autism advocacy is that an NT-run organization can bring in millions of dollars while the Autistic Self-Advocacy Network actually has to coalition with NT-run organizations because they lack sufficient funds to achieve the many things that they are trying to achieve.

Quote:
There are quite a few sociological studies that show that for an online community to continue for success that a common enemy is often generated to provide this type of bond..success..

In real life there is simply no rational reason to fear anything that Autism Speaks does..


Citation desperately needed here. I have been a part of numerous online communities and for the most part they are not in fact defined by a common enemy. They are more often defined by commonality - interests, hobbies, sexual orientation, having similar or the same disabilities. I can't find any research to support this.

Further, as I made the point before, the internet - online - is a part of real life. You're creating a false dichotomy to not just dismiss the criticisms against Autism Speaks but to stigmatize it. Throw in your pathologizing of it by making it about autistic people's empathy supposedly not being sufficient to properly understand Autism Speaks' work. Forgetting the fact that you are autistic too, but somehow this doesn't apply to you or your perceptions and mischaracterizations of criticisms directed at Autism Speaks.

Quote:
If a person misspoke about a fact..or said something that someone did not agree with..It is not the frigging end of the world...

But..EH...hate bonds..not as good as love..

But for some hate is an effective online tool for community..bonding..most sadly in my opinion...


You think this is about hate? Well, maybe it is. Autism Speaks has on more than one occasion expressed hate about autism, which is problematic because I do not see how to separate the autism from the person, or to treat autism like it kidnapped a hypothetically perfect child, or a commercial about how autism destroys families (filled with actual lies for that matter), or an editorial only published the other day that reiterates all of these positions that you claim Autism Speaks doesn't hold.

Quote:
If one goes to Autism Speaks Facebook page..it's all about loving children..with autism..It's clear to see...

A child can be unconditionally loved no matter what their problem...is...and compassionate parents..do treat their children this way..

The folks at Autism Speaks are extremely compassionate about human beings..they just do not want to see people suffer from the real devastating issues associated with many forms of autism..

It's great if you are one of the fortunate ones that do not suffer..but that does not eliminate any problems for those that do..Rhetoric is nothing..action is everything...as far THIS goes...in the REAL FLESH AND BLOOD WORLD....

Again..in my opinion..only...is all THIS IS...


I forgot to address this earlier. Just because you see people discussing this online does not mean that no one is doing anything offline. Just because you have only seen this discussed online does not mean that this is not also discussed offline. You're creating a straw man by creating yet another false dichotomy to discredit criticism of Autism Speaks because again you have no real argument here.

As far as Autism Speaks' facebook page, that's PR, and it uses emotional manipulation (think of the children!) which is precisely what you're doing by repeating it as if a facebook page proves anything substantial. Of course they're going to put up a page that makes them look good. They probably think they're doing good, but when so many autistic adults react to their rhetoric and actions they way we have whether online or off is an indication that they're failing at some level, whether it's failing to address and meet the needs of autistic adults (which they indeed fail to do) or whether it's misrepresenting autism as a soul-destroying life-destroying plague upon the world (which they indeed do), these criticisms are valid and aren't going to go away just because you think all of this animus stems from one corner of the internet, and not a decades-long history of Autism organizations ignoring adults and autistic adults pushing back against that.

Plus I am going to reiterate again how you are using autism to discredit people who criticize Autism Speaks: You give us a catch-22 wherein if we are capable of talking about this we're suddenly not seriously disabled and do very well, and thus Autism Speaks doesn't reflect our needs. That is, being able to speak up automatically disqualifies us from having a say in the discourse about autism, and you actually deployed this in your response.

This is a catch-22 that has also been discussed among autistic people for decades. And it happens to many of us routinely, when parents or other autistic adults try to shut us down by assuming that ability to communicate means super high functioning and doing very well and not being seriously disabled.

Quite frankly, you add nothing to this discussion that Autism Speaks themselves doesn't already add.



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15 Nov 2013, 9:58 pm

ASPartOfMe wrote:
You are seriously using financial means gained by emotional manipulation as a measure of good or bad. By your logic this makes Bernie Madoff a superhero.

"everywhere else online as there are many people on the spectrum who would never put themselves in a position to communicate with the general public in writing or in real life..to voice their opinions..so they simply have no voice.."

Which is why I said I favored the money to be used to find ways to communicate with these people so we know how they feel about having their brains vaccinated instead of vaccinating them first. If Autism Speaks was interested in communications and giving people a voice they would put autistic people on various places in the the spectrum in leadership and policy making positions since they were autistic children at one point in their lives. But since autistics may not have money and think logically rather then emotionally that does not count by your and their way of thinking. While there will always be haters online that would be a REAL WORLD ACTION that would ameliorate a lot of it. . They have continuously refused repeated requests to do this. They have repeatably put language that actual autistic people thinks is demeaning and offensive. Yes people do misspeak, things come out the wrong way as autistics we understand that as well as anybody but when it constantly happens it logical to believe that is what they believe.

When I look at the rhetoric, the lack of autistic making decisions, and their money and power those are REAL WORLD ACTIONS to fear them in my opinion.

Because one loves someone does not mean they will do right by them. It is just that emotional attachment that can lead to wrong solutions. It can lead them to smother people with their love.

"It's great if you are one of the fortunate ones that do not suffer"
Excuse me?
Fortunate yes, suffer a lot less the others on the spectrum yes, a nice tool to invalidate my opinion yes.


Like I said this is just my opinion..I just used this discussion about autism speaks to research the facts and get my mind off of pain in the past..I really do not personally ever think about Autism Speaks at all..It is just an exercise in research for me..

I've documented countless references to back up all my claims on this website...they are all still there if anyone is interested...I am no longer even interested in the whole Autism Speaks controversy..

Commenting here is just a passing fancy for me at this moment...

As far as I am concerned you guys can spend all your time discussing how much ya hate Autism Speaks..But it will not change a thing..as the organization will continue to thrive as long as there is real human empathy in this world...

That is all..and instead of wasting anymore of your time Verdandi..have at it..

I am tired of hate...

That is all..

Again.....


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16 Nov 2013, 7:13 am

aghogday wrote:

This is the cognitive part of empathy my friend..understanding the facts associated with what other people experience and suffer with other problems than we do...and putting that together with the emotional empathy that makes us fully human...



So let me get this right - being Autistic means that me and my son not fully human? Having difficulty with cognitive empathy means that we're some kind of sub - species or something?

Then you have the temerity to accuse other people of hate because they don't agree with Autism Speaks! After reading that it kinda makes sense that you would support Autism Speaks I guess.


I have no real personal investment in what people think of Autism Speaks - simply because I live in the UK and have no involvement in anything they do. Their lack of sufficient resources to help the community has no impact on me, and they receive no money from anyone in my community because they are completely unknown here. If I have problems with them it is with the skewed presentation of Autism they promote.

I only have Asperger syndrome but I am also the parent of an Autistic child, one who can be quite difficult. Most days I have to listen to him screeching and grunting when he is upset. He is very stubborn about doing anything. And yes, He can be a bit aggressive at times.

But you know what - he is not a missing child, he is not a disaster, he is not the victim of an apocalyptic plague. He is the most wonderful bubbly, funny and interesting child you could wish to meet. My NT wife and I don't mourn the hypothetical 'perfect' child we never got, we celebrate the wonderfully interesting child we got instead. We don't see him as a sub human thing to be pitied, but as a highly intelligent child who has his own way of seeing the world.

I don't want my son 'cured' or 'normalised' I want him to be accepted for himself, to be loved for his difference not feared. Here in the UK our primary Autism Charity is the NAS, their attitude is not to demonise Autism but to say "accept difference, not indifference", I posted about them yesterday Here .


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16 Nov 2013, 7:52 am

grahamguitarman wrote:
aghogday wrote:

This is the cognitive part of empathy my friend..understanding the facts associated with what other people experience and suffer with other problems than we do...and putting that together with the emotional empathy that makes us fully human...



So let me get this right - being Autistic means that me and my son not fully human? Having difficulty with cognitive empathy means that we're some kind of sub - species or something?

Then you have the temerity to accuse other people of hate because they don't agree with Autism Speaks! After reading that it kinda makes sense that you would support Autism Speaks I guess.


I have no real personal investment in what people think of Autism Speaks - simply because I live in the UK and have no involvement in anything they do. Their lack of sufficient resources to help the community has no impact on me, and they receive no money from anyone in my community because they are completely unknown here. If I have problems with them it is with the skewed presentation of Autism they promote.

I only have Asperger syndrome but I am also the parent of an Autistic child, one who can be quite difficult. Most days I have to listen to him screeching and grunting when he is upset. He is very stubborn about doing anything. And yes, He can be a bit aggressive at times.

But you know what - he is not a missing child, he is not a disaster, he is not the victim of an apocalyptic plague. He is the most wonderful bubbly, funny and interesting child you could wish to meet. My NT wife and I don't mourn the hypothetical 'perfect' child we never got, we celebrate the wonderfully interesting child we got instead. We don't see him as a sub human thing to be pitied, but as a highly intelligent child who has his own way of seeing the world.

I don't want my son 'cured' or 'normalised' I want him to be accepted for himself, to be loved for his difference not feared. Here in the UK our primary Autism Charity is the NAS, their attitude is not to demonise Autism but to say "accept difference, not indifference", I posted about them yesterday Here .


For me US is the whole human race..

I am a human being..I do not define myself with a diagnosed psychiatric/neurological disorder..but to each his own..as I already clearly indicate..I do not impose my will on other people...

Recent studies indicate that young college age adults score approximately 30% lower on measures of empathy in the last several decades..so this is clearly not an issue specific to any one psychiatric/neurological disorder....

To put in not so eloquent terms..Suzanne Wright was speaking out of her heart/(ass) instead of logic when she made that statement..She already clearly knows that her description of Autism is not the same for all people who are diagnosed with this disorder...

In other words..as usual..some people on the spectrum are looking at her statement in black and white literal terms..and completely missing the FACT that the Autism Speaks organization..as a professional Autism information organization..identifies this in their professional guidance on their website..designed by scientists..not emotional pleas for help from a grandmother who identifies that her grandson has suffered from the more dire consequences of an identified psychiatric disorder...that also has a neurological origin in the estimation of neurologists..and psychologists/psychiatrists...

This is not the first time that Ms. Wright has done this..she is not technically qualified to make these type of statements in a professional way..but she is the boss's wife..and basically gets to do what she wants...and this is a philanthropic effort...so it is not like this is going to be of any deficit to their personal finances..whether people like the way she talks about it or not..that's just my opinion..and best guess..about this though...

Autism Speaks is obviously not a perfect organization..and I would not have my wife going off on something she is not educated on if I was running an organization..but my wife listens to my logic...and she is not overly emotional over things like this...but Ms. Wright is..that is just her personality..and it's just not that big of a deal to me...

But I have never suggested anyone should contribute to Autism Speaks..financially.. I always recommend local organizations..but I am a tribal thinking person..anyway..like most human beings...

And beyond this.. although I appreciate the positive things Autism Speaks does..I do not like their community standards on their website..They will censor comments for PR purposes..

In my opinion..the worst behavior for any organization is that of censorship of differences of opinions..and some self identified autism advocates/self advocates are the worst offenders when it comes to censorship of differences of opinions...

In my opinion if there are currently any 'NAZI's' in the world which is only a metaphor..please do not take it literally..they are people who censor differences of opinions..as while it is not required on private websites..freedom of speech is still what makes our country the strongest country in the world....overall....

IN other words Autism Speaks panders to autistic people..the ones who are basically saying disgustingly offensive things about the organization..who are complaining about this..to make sure people do not think they are deleting out and or banning autistic anti autism speaks comments..
But they will delete my comments if I attempt to provide a critical analysis like this..against the offensive comments that are not warranted...like.. that the Autism Speaks organization is actually endorsing aversive shock therapy by the JRC..which they are on public record as clearly not doing..that I do have links ands references.. for..

I do not care for the 'snooty' attitude of Mr. and Ms. Wright..but I look at all the positive and negative aspects of a situation attempting to do that without personal bias..of how people's personality may or may not rub me the wrong way..that is part of acceptance..learning to accept people that rub ya the wrong way...in my opinion..cause lord knows I know my detailed and long comments rub people the wrong way..but that is just me..if somebody does not like it I do not see why they cannot simply ignore me....

This site is no more accepting of different ways of thinking than most any other place on the internet..

Why? Cause that is just simply human nature...

All humans discriminate..But there is the potential for consciousness cognitive efforts for acceptance..

I try to do that ...but yeah.. i am only human..like everyone "US"...

And by the way I do respect the NAS very much..it is sad we do not have a really good charitable organization like that for Autism in the US..but this is mostly i think..because of our current system of privately run health care..

The UK government works hand in hand with the NAS in their overall civilized effort to take care of their fellow citizens..which is unfortunately one of the areas of life in the US..that keeps this country from having a better overall health for a society...

I would be completely happy if Autism Speaks suddenly worked just like the NAS...

Autism Speaks actually only funds about 4 percent of Autism Research in the US..even if the organization disappeared it would have little real impact on autism research...Autism Speaks shines most in the political arena in lobbying for insurance benefits..and general information on their website for autism research..and awareness of the disorder in general...

Ms. Wright did a disservice in giving improper educational information in her over generalized statement..but again..this is the real world..and unfortunately that is how it works sometimes..it can be accepted here..as it is the best one we currently have...the real world..that currently is..that is.....


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16 Nov 2013, 12:17 pm

Verdandi wrote:
Feralucce wrote:
The blogger has a passionate stance on the subject... and that may very well be what puts me off about the style... I am passionate, but relatively withdrawn from it (again, an issue that I have and do not put on anyone else)... When passion interferes with a logical discourse, I am automatically, through personal experience, disposed towards walking away from it... partly because excessive passion interferes with intellectual intercourse, partly because most (please note the careful word choice of MOST) people who are that fired up cannot leave the passion to the side and are irrational about their cause... and I have little room or tolerance for irrationality... Again... this is my issue, and no one else's


Then read John Elder Robison's post on the topic:

http://jerobison.blogspot.com/2013/11/i ... peaks.html

Also, your characterization of her post is as "irrationality" is inaccurate.

Quote:
However, I would like to point out that such impassioned positions rarely, if ever, make a difference in the united states... Autism speaks is a private organization, and as much as I hate to say it... as long as they are not breaking any laws in the pursuit of their goals, we have little, if any recourse... and honestly, we have no input or say as to how they will proceed... While the nature of the group has changed in the past few years, I do not want them speaking for me... but our opinion will not change it.


This entire paragraph is wrong. Impassioned positions have made a difference many many times in the United States. It is a false yet often repeated misconception that the appropriate way to seek change is to be as polite as possible, but the reality is that change is often prompted by impassioned positions. In fact, I would argue that the US was founded due to "impassioned positions" taken by the American rebels in response to British rule. Or would you say that a war is a purely rational response involving no passion at all?

As far as the bit about Autism Speaks not breaking laws, this is wrong because you are allowed to criticize people even when they are not breaking the law. Since Autism Speaks purports to represent autistic people and families of autistic people, then it is in fact quite appropriate for autistic people to provide input and criticism in response to how AS engages in that representation.

What you wrote makes sense in the context of someone knowing basically nothing about the history of political activism, but in order to actually discuss activism, one needs to actually know things about it.


Okay... I have crafted several responses to this... and I think this one gets the point across best...
1) No... I have no desire to read anything about autism speaks, not even this thread anymore...I have done my independent research and told by one of the board members that they would not be interviewed by an autistic film maker because "It would be a waste of time"... Thank you though.

2) please go back and read my statement... discard all of your preconceived notions about what I am saying... That statement was CLEARLY worded as "These are my issues." Not one statement in there says "This person is **insert thing a** or **insert thing b**".

3) Go read the paragraph about irrationality... I state clearly, again, that this is MY perception...

4) I am wrong? About what? You cite a statement made... about legality... and then you address something I did not say... I did not say ANYTHING about a lack of ability to criticize... I stated we have little recourse... they are allowed to do what they are doing. Period... whether we criticize or not... and we cannot stop them... period... That is what that statement means... That is what I meant about input... they have made it clear that they don't want ours... And criticizing them on a message board/forum isn't input anyway...

5) You remind me of superman a little... you jump to stunning conclusions in a single bound... We are talking about a blogger... we are talking about words. I was addressing words...I was addressing an impassioned position... Not war... yes... actions change many things, but there are no actions that are taking place... there is no war... there is nothing but words... And that is what my point was... an impassioned position doesn't change ANYTHING... it requires action, and a blog is NOT action...

6) You put words in people's mouths (clarification - it appears that you read something and then draw a conclusion based on your interaction with NTs... i.e. from our words, you are trying to milk out the true intent of what they were saying.) Please take the time to dial it back a couple notches and ask for clarification... because I, for one, say EXACTLY what I mean... nothing more, nothing less...

I am simply going to post the qualifying statements from the post that you disagree with so vehemently... "I know this is MY issue due to my past experiences with the aforementioned groups..." - "(again, an issue that I have and do not put on anyone else)" - "(please note the careful word choice of MOST)" - and this one follows a statement you too umbrage with "Again... this is my issue, and no one else's "...

In closing... you put words in my mouth.... just like autism speaks tried to do... You also with tone, word choice and direct statements have shown a complete disrespect for myself... Just like autism speaks did... so... like with them... I am done...

I just wish there was an unfollow this thread button


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21 Nov 2013, 7:15 pm

Hypothetically, if someone were hypothetically planning to hypothetically deface an Autism Speaks monument, hypothetically, what slogan should they paint on it? Hypothetically?

Something short and snappy with a clear message, like "Autism Speaks hates Autistic people." Hypothetically.


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22 Nov 2013, 7:04 pm

BlackWolf wrote:
Hypothetically, if someone were hypothetically planning to hypothetically deface an Autism Speaks monument, hypothetically, what slogan should they paint on it? Hypothetically?

Something short and snappy with a clear message, like "Autism Speaks hates Autistic people." Hypothetically.

Hypothetically, I would discourage any behavior like that... We already have enough problems with inaccurate media representation of Aspies...

However... the standards have been
"Autism Speaks doesn't speak for me"
"Autism Speaks can shut up"
"Autism Speaks takes my voice"

However... if, hypothetically, you are considering defacement of private property in a completely NON-hypothetical manner... please don't... We don't need another example of "An autistic person acting out."


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26 Nov 2013, 12:15 pm

Autism is not a chemical disorder. It is a physical difference in the brain.

Physical "Problems" cannot be solved by chemical medications. Physical "Problems" and differences can only be changed by surgical methods.

There are only two "Cures" for autism - lobotomy, and bullets. Indirectly, though they will not admit it, Autism Speaks' management (not necessarily those posting on their Facebook page) is advocating the "Bullet to the Head" method.

That's why I oppose them - they're looking for a legal method by which to commit genocide. Sorry if that sounds a bit harsh, but that's the least inflammatory method by which I can accurately state my opinion of them. If I softened my opinion, I'd be lying to myself.



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27 Nov 2013, 4:11 am

Azereiah wrote:
Autism is not a chemical disorder. It is a physical difference in the brain.

There is insufficient data to draw this conclusion... While there are ongoing studies with high definition fiber tracking, these results are not available... while I agree that you are probably right, to state this as fact at this point is premature.

Azereiah wrote:
Physical "Problems" cannot be solved by chemical medications. Physical "Problems" and differences can only be changed by surgical methods.

I disagree... examples: an infection is a physical problem. Antibiotics are chemical treatment. Caustic chemical ingestion is treated with activated charcoal - another chemical treatment. Asthma is treated with steroids...

Azereiah wrote:
There are only two "Cures" for autism - lobotomy, and bullets. Indirectly, though they will not admit it, Autism Speaks' management (not necessarily those posting on their Facebook page) is advocating the "Bullet to the Head" method.

1) by definition, if they are advocating... they HAVE to admit it... catch 22 here
2) Fallacious assertion... Often lobotomies were used in times past... but in cases of autism they had a 98% failure rate (with failure being defined as achieving certain behavioral traits)
3) Your statement about bullets... I for one find it distasteful at best, offensive at worst... please refrain from phraseology like that... It is fine if you want to believe that, but we have enough problems in the media representation of autistic spectrum disorders without one of our own making statements like this


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27 Nov 2013, 12:00 pm

Ah, yes, sorry - I tend to be caught up in near militant thinking due to anger.

However, their beliefs appear to be that autism is a mental illness that should be prevented, cured, or destroyed for the sake of the parents, rather than for those afflicted by autism.

Were it chemical/hormonal, I suspect that we could easily have found which substances specifically are out of balance. Receptors in the autistic brain seem to function differently, though - potentially due to placement. Glutamatergic neurotransmission is off-kilter at best, for instance. Some of my other professionally diagnosed friends have extreme reactions to THC, for instance, (as do I) and we suspect that it's caused by the receptors not functioning as intended.

Now, there may be a chemical cause for the neurophysiological changes present in the autistic brain - but that doesn't mean it's not a physical difference.


The infection example may be a physical problem, but only loosely - the infection is caused by a physical foreign entity inside the body. The chemical treatment is designed to fundamentally throw off the function of the foreign body, rather than repair the function of the host's body. We're trying to kill the bacteria, not cure ourselves. Viral infections are closer to the problem of mutation-based illnesses, as viruses don't seem to be alive in the classical sense and so cannot easily be removed except by physical damage (from white blood cells). Booster shots improve the host's bodily functions to aid in removing viruses, but do not actually remove the virus itself. Starvation is a physical illness caused by not taking in enough physical food without chemicals.

Perhaps I should have clarified it as being a non-normal developmental difference, rather than a negative physical condition - there's not much evidence supporting it as being abnormal for the individual with the diagnosis, just for it being abnormal compared to the average. The causes are not understood well enough to support it as a sickness. Genetics and substance intake appear to have a lot to do with it, but it's also unknown if there were reasons for autism boosting survival rates after a cause appeared.





In any case, that was definitely an inflammatory remark packed to the brim with logical fallacies, and I apologize for such speech - though it may be the simplest way to get my opinion across.

Autism Speaks is searching for a cure in the name of saving the parents from a lifetime of misery, rather than searching for knowledge and treatment for the disorder itself. Therapy/parenting methods and whatnot would be a more suitable path in my opinion, and there have been numerous cases of the organization snubbing those who actually have a disorder in that category due to ideological differences. Videos have been put out that are intensely offensive to many with autism, but appeal to the parents' sense of tragedy over their child not being completely neurotypical.

After a statement in a video in which a parent's only regret about not committing murder-suicide would be that her NT child would be alone, I have had below zero respect for the organization. They have retracted that comment, but the fact that the current management allowed it to come out in the first place shows that they tolerate that method, though they no longer outwardly support it.

I have started directing parents I run across to ASAN instead, as there are no professionals on autism more educated about its effects than those who actually have it.



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28 Nov 2013, 11:11 am

KenG wrote:
Because difference (autism) is not a disease.

Hell yes!
KenG wrote:
Because every brain is beautiful.

Umm, if you think that internal organs are beautiful...You probably have more than just disorders like Autism. No, seriously, it's called objectum sexual. I'm not sure if it's a disorder or not.
KenG wrote:
Because we love neurodiversity.

What's that?
KenG wrote:
Because we are not puzzles, we are people.

Hey, I know some people that are autistic puzzles. It's honestly quite sad, because they could be killed just by someone spilling their drink on them or a pet.
KenG wrote:
Because not being able to speak is not the same as having nothing to say.

I can speak.
KenG wrote:
Because nothing about us, without us.

What???
KenG wrote:
Because we celebrate the beauty of the autism spectrum.

It isn't beautiful because it isn't a person.
KenG wrote:
Because we all shine on, like the moon, like the starts, like the sun.

Hey, you are clearly insulting start buttons.
KenG wrote:
Because the sky is blue. (OK, maybe this one is not a good reason for protesting Autism Speaks, but all of the above are good enough)

That's kind of a wierd reason.
My reason is that they are anuses.