Stop Bashing Autism Speaks!

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To be a rock and not to roll

Combined with the preceding lyrics about "as we wind on down the road," and "if you listen very hard, the tune will come to you at last, when we all are one and one is all, to be a rock and not to roll." Plant is talking about the culmination of a spiritual journey that has resulted in the woman finding out that life is about the simple things and these things bring joy far more than any material possessions can. To be a rock and not to roll is stating that you have to stick with your own path, and don't follow what everyone else says is happiness. It's a fairly simple message in my opinion but one that can also have several other more subtle interpretations, as well as one that is stated gracefully.

To be the still point around which other things move. To be unchanging, stable. To have reached the end of The Journey.
Meant to evoke a passage from Tolkien (as are most of the lyrics of this song): near the end of LotR, Gandalf says: "I am going to have a long talk with [Tom] Bombadil: such a talk as I have not had in all my time. He is a moss-gatherer, and I have been a stone doomed to rolling. But my rolling days are ending, and now we shall have much to say to one another." Tom Bombadil is meant to be simultaneously inside and outside the story. Bombabil is already at Journey's End. Or more properly, before its beginning (a type of Christ, or Man before the the Fall).

Yes it does. He said the problem with self-advocacy. That suggests all. If he said the problem with some self-advocates then I wouldn't mind. But it blatantly does suggest all of a particular group.



See above for how you're wrong.


It's not an 'ideological' term, whatever that is.


Yes it would. Unless you qualified who it was then it's a general statement referring to all.


Then why did he make the point if he didn't think it didn't matter?


Yes it can. People can just use this as an excuse to interpet something in a way that it doesn't make sense to interpret it though.

And then you go off the point.

ideological - of or pertaining to or characteristic of an orientation that characterizes the thinking of a group or nation

Self-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own lives, including being in charge of their own care in the medical system. The self-advocacy movement is (in basic terms) about people with disabilities speaking up for themselves. It means that although a person with a disability may call upon the support of others, the individual is entitled to be in control of their own resources and how they are directed. It is about having the right to make life decisions without undue influence or control by others.

http://www.thefreedictionary.com/ideological




http://en.wikipedia.org/wiki/Self-advocacy



Hypothetical analagous example:

There is a classification of a disorder for individuals with the inherent characteristic of yawning alot. Unfortunately in some cases it has caused vehicle accidents. Because of this, people diagnosed with the disorder have lost the their license to drive.

A group of individuals that are not as heavily impacted by yawning, that have the disorder insist that yawning does not present a significant problem for them when driving. Because of this they have started a movement called the vehicle rights movement with the ideology that yawning is not a significant problem for this group of individuals that have the disorder, that prevents them from driving and they should have the right to drive.

Observing the issue, an individual states that the problem with the vehicle rights movement is yawning alot, which is part and parcel of the disorder.

It's not the type of statement that I would personally make; likely some of those people with the disorder with inherent yawning, would get upset about it, and it would just cause more hate and discontent.

There is a level of validity to the statement, but it doesn't necessarily indicate that everyone in the movement's yawning is significant enough to cause problems when driving.

There are self-advocates that are reasonable and listen to evidenced based data to form opinions, and there are some that will not budge from an opinion no matter how much evidence is presented to counter that opinion. There is evidence of it in the record.

Tambourine Man presented the statement that the problem with self-advocacy is black and white thinking, which is part and parcel of autism. It's really not much of a stretch to think that black and white thinking could impact the arguments over this that have created problems.

There have been people that continue to state the organization does absolutely no good for autistic people, regardless of any objective evidence presented to refute that statement. That could be the source of the problem and indicative of black and white thinking common to autistic people, but the real problem is when people start personally attacking each other over it, or slandering the organization.

I would not have asserted it, question it maybe, but not assert it; but I have had decades of practice trying not to offend people by moving straight to what I consider fact, without the consideration of other people's opinions and/or feelings. It takes a great deal of restraint for me to do this, and I am not always successful.

The issue over what the word self advocacy means or what ideological means, is fairly easy to resolve with a third party source.

There are many gray areas, though, that can be interpreted in different ways. I understand your offense at the general statement about black and white thinking, since you don't believe it applies to you, but couldn't help myself but to interject, when you countered Tambourine's statement that no one can speak for all autistic people.

They are too complex; even if one were to state they all have impairments with social interaction, because a book says so, some overcome this and are well liked within the group of people they are around. They still have autism, have adapted to social interaction needs, and little to no impairment of concern is not noted by those that surround them.

Same with concrete, literal thinking, some adapt well enough where rigid black and white thinking is not apparent, and some don't. It's becomes a problem in some cases, but not all cases.

Some cannot drive, because of sensory issues, but fortunately it is not a problem that the legal system or medical profession has generalized out to everyone diagnosed with Autism, where everyone loses their license, as in the hypothetical example above.

There are probably hundreds of more examples, but I think one can safely state that no one can speak for all autistic people.

True, you do not get it.

The place for constructive progress, communication, understanding, was when Autism Speaks started. Only after they failed have they tried to recast themselves as supporters of the community that their original intent was to find a genetic marker and eradicate through abortion.

30% of the population has autistic traits, 1% meets DSM criteria, that is over three million people. Perhaps 1% of them do meet the, is going to spend life in an institution or group home.

Their started intent, Eradicate Autism, would have taken at least the 99% who meet DSM standards as collateral damage.

Like all Eugenics programs before them, they showed the worst to justify getting rid of all.

Science and Medicine have long known that all birth defects are the result of the parents Genomes combining, and in a small percentage of cases that brings out the worst of both. Some religious minorities know of risks, and pre marital genetic testing is the response.

It is a reasonable way of reducing risk.

Something found in 30% of the population cannot be called a defect.

Many people think there is something wrong with the other 70%. At least half of them are Social Excessives, and sell used cars and insurance. They are also common in Media.

They may be a majority, but life is not a democratic election.

If you produce films like "I Am Autism," Living with Autism Everyday," of course film buffs will say it is derivative of prior work, citing "Lives Not Worth Living." Autistics had some staring roles in that one.

Those who knew the Science told them early on that it was not a simple genetic defect, and got banned. Marketings was bringing in money, Science be damned!

As predicted, Research shows it is caused by 30% of the population, The parents genomes combining to produce a few disabled offspring.

Not being a single marker, like other conditions, even genetic screening would not work. We do not know enough about genetics.

Even today, Tamborine Man, an obvious. Something is going on, only recently discovered. It has been in the DSM since 1994, he went to school, no one thought he showed a Differance of Thought and Perception?

No doubt, Autism needs treatment. Just a little would have changed my life.

So we do have a large group that will just get by, a smaller group that could get by with some help, and a very small group that nothing will help except full time support.

Standard medical practice, Triage, those who will survive are left to do so, all effort is expended on those who with some help can live, and hopeless cases are made comfortable.

Autism Speaks picked group three, and was willing to get rid of them, and groups 2 and 1. They claimed that Asperger's, HFA, were not the "Real Autism," they were out to eradicate.

Children do not chose to be born, and some come with lifetime problems. Some join the Service and defend the country, they do not chose to get blown up. In both cases they deserve support, and to be made as comfortable as possible. It is Ethical Human Behavior to do so.

If Autism Speaks had done what most Charities do, provide comfort and support to the afflicted, I would have no problem with them. Profound Autism is a tremendous burden on parents, the government, and their needs are unmet. Building state of the art group homes for the disabled would solve some problems for many. Parents do not live forever, group homes and institutions are not up to the need.

I would think the same of providing direct support to parents. They need help.

Asperger's, HFA, it will have rough spots, but Tamborine Man will make it, grow up by forty, just like the rest of us always have. Help would be good, just a little, Temple Grandin says Mentors work.

Autism Speaks chose and funded a Eugenics Program.

They failed, their Science reached a dead end, they produced nothing.

Now they stand, like Custer at The Little Bighorn, saying, I will be Chief of your tribe.

Like the Americans who overthrew the Taliban, who years later say, put down your weapons, submit, and we will include you in our government.

Well, we know how the first one turned out.

The only group of autistic that can be helped, besides Humanitarian Duty, are like Tamborine Man, almost in the world, could make it, the boy needs a good talking to. I saw what he posted on Autism Speaks, and on behalf of Kat and HP, he needs some Social Development.

He has been behaving as badly in the world as Autism Speaks does in the Autistic Community. Him I have hope for. His disorder is not self inflicted.

Autism Speaks is a failed Eugenics Organization, that has produced nothing for the most disabled, failed to support their parents, the many more who could make some progress, and is now talking about giving keyboards to people in institutions.

Genetic study has advanced a lot. The Human Genome Project, The Neanderthal Genome Project, and Medical Science has been quick to pick up on genetic relationships to many conditions. It is good work, sound Science, and I do not think I have ever seem a study funded by Autism Speaks in the bibliography.

The simple reason is the study of Autism is going at it backwards. Eugenics, yes, that might work, but knowledge takes a broad study, something other people are doing, and doing it well. Real Science.

Autism Speaks does not build the needed support systems, does not support the disabled autistic, their parents, has disowned the Asperger's HFA group, funds junk research that no one else cites, and have fully disproven their own reason for existing.

They started a dirty War on Autism, and lost. It is not time for us lay down our arms and submit to peace talks as they direct.

The war ends when they run up a White Flag.

Autism Speaks! You are out of ammo, there is something that can be salvaged, but not on your terms.

Frequency estimatesEstimates of the prevalence of autism vary widely depending on diagnostic criteria, age of children screened, and geographical location.[13] Most recent reviews tend to estimate a prevalence of 1–2 per 1,000 for autism and close to 6 per 1,000 for ASD;[1] PDD-NOS is the vast majority of ASD, Asperger syndrome is about 0.3 per 1,000 and the atypical forms childhood disintegrative disorder and Rett syndrome are much rarer.[14

@aghogday so are you saying there going to invent a new disorder to compensate for diagnostic overflow

The DSMV diagnostic criteria is changing. Repetitive Behaviors and Stereotypical interests is an element that can currently be excluded in the diagnosis of PDD NOS using the DSMIV, so there are some with a diagnosis of PDD NOS, that do not meet this particular criteria.

In the DSMV at this point in the proposed revision Repetitive Behaviors And Stereotypical interests is a requirement for all diagnoses.

The social communication disorder at this time is a new disorder criteria that has been added in. There has been speculation that some that might have received a diagnosis of PDD NOS in the DSMIV may now instead receive a diagnosis of social communication disorder, because they don't meet the Repetitive Behavior and stereotypical interest requirement.

I saw one study that indicated that the majority of people with PDD NOS do not meet that required criteria, but it was a limited study.

It is all speculation at this point, because the final revision of the DSMV has not been approved.

The movie Rainman sucks. It portrays neurotypicals as the cool guys and autistics as these idiot savants. Why can't the autistic be the cool guy?

wouldnt it make more sense then to invent a new catagory.why not have a 4 step level then instead of three.have pdd nos as step 1 and as and hfa in step 2.instead of as and hfa in step 1 and have a new catagory

Well, I for one think it is pretty cool that we managed to see that quote changed. Perhaps it is a small victory, perhaps it is a large victory.

Regardless, it is a victory. If you guys don't think so, I can ask her to change it back. Just kidding...