why we must be weary of autism speaks
I wasn't making any assumptions about any existing individuals with regressive autism or any other form of autism. I'm in no position to interpret an individual's experience of life, when they can't communicate it.
However, there have been documentaries on individuals with Autism that can't communicate, that have gained communication through adaptive means, that express their lives as sensory torture. Again, that varies, depending on the individual.
I was responding to Aspie 48's statement in finding a way to cause autism in disatisfied "NT"'s.
I was referencing the symptoms of regressive autism, and promising that no one would would want to lose their abilities to communicate with the world, including the ability to speak. I'm confident that no rational individual with those abilities would want to lose those abilities, if given a choice.
And, I don't think Aspie48 was suggesting that anyone would, he was likely referring to a condition similiar to his.
I didn't see where DaLurker was making that assumption. He was correcting his interpretation of Inventor's statement that the childhood disorder was no longer severe in adulthood.
And he was also making it clear that although Inventor may not need research for a cure, for himself, that there are others that do. He wasn't making an argument that everyone wants a cure.
I provided evidence that it is still severe into adulthood, per that 1 in 110, that are measured. The 1 in 110 that are measured for the most part, with actual autism disorder/PDD NOS, are developmentally disabled; some may gain independence in life, but current government statistics, don't bear out that it is only a tiny minority that won't gain independence, per the statistics provided.
And, I also provided evidence that the results of Autism Speaks research, is already helping in earlier diagnosis and intervention, that has been evidenced to lead to greater levels of independence for many of those 1 in 110, that might not have that opportunity for greater levels of independence.
There is abundant evidence that not everyone with autism wants a cure, and Autism Speaks is well aware of it.
They make it clear in their mission statement that they seek to help those whom struggle Autism, not those that don't struggle with Autism.
For those who are of the opinion that it is a societial issue of discriminatory practices, for just a difference in thought, rather than an inherent disabling medical issue, much of their personal struggles are with society, not an inherent medical condition that some do find disabling.
The diagnostic features listed in the full text of the DSMIV TR describe Aspergers as a disabling condition. It is the reason many go in for a diagnosis. If one has a professional diagnosis for an ASD that does not disable them in life, in anyway, they were not likely properly diagnosed.
http://sites.google.com/site/gavinbollard/about-aspergers/dsm-iv-criteria-for-aspergers
Autistic traits don't cut off like a faucet if someone is not diagnosed with the disabling disorder; there are many more individuals that aren't diagnosed, that may have most of the criteria, at a degree of impairment, that they may not consider disabling in life, and might not warrant a diagnosis if they went it for one.
While they might refer to themselves as Autistic, it doesn't necessarily mean they have symptoms that work together to significantly disable them in major areas of life.
And beyond that, there are many people that may have most of the criteria, at some degree, that don't associate themselves with anything to do with Autism.
This varies from individual to individual. No one has an answer for autism that is going to work for everyone. Some need a great deal more help than others in life, that is crystal clear, and reflected in Autism Speaks mission statement.
Da-Lurker is not as verbose as I am, but this was basically the gist of his comment. Whatever degree of disability, if any, that Inventor associates with his Autism is not identical to anyone elses Autism. No two cases are the same, not even in identical twins.
In reality, Autism Speaks acknowledges this point to a greater degree, than some self-advocacy groups do, in respect to the suggestion that the disorder is not a medically disabling one for many whom are diagnosed and measured by government statistics.
Autism Speaks was all about Genetic Testing, and the only reason in the real world is Abortion. There is no Genetic Repair, as all those Downes babies could tell you. They were looking for a marker, and only changed their story after it was shown to be impossible. It was their big shot, they missed, and have been trying to re-Brand their Eugenics Program.
The majority of their spending was to find a Genetic Cure, and Eradicate Autism.
I know, because I defended it. I defended them because I saw the dead end they were heading toward, and cheered them on, because rdos and myself were sure Neanderthal Genetics would show up.
We got a double hit, the defective autism genes of Autism Speaks were a match to The Neanderthal Genome Project. Sapiens do carry neanderthal genes, and they are most common in the autistic.
rdos was around long before anyone else, pointing out mental traits as being neanderthal related.
I disagreed, until I did some research to disprove him, and disproved myself.
Another was neanderthal did the cave paintings, back when sapiens were just another ape. Now today, from Coasta Del Sol Spain, 43,000 year old paintings of seals in caves, credited to neanderthal! Take That! You art impaired Sapes!
I got there through Climate History, Anthropology, Cultural Goods, rdos through mental traits, and the world did catch up after a bit.
Autism Speaks is still in confusion. They are having a problem with, Autistic Children Grow Up!
The stuttering Ds, Dx, disabled, diseased, disabling, but some are not disabled, that are Diagnosed?
Even Government Certified! They meet all criteria, and are happy and making "A"s! It used to be so easy to be a Psycholigist, if they could not write Cursive, they were a ret*d! Since keyboards, it is hard to tell who is the most ret*d.
I had it all, was horribly disabled, and mistreated, because I thought my teachers, other adults, were Honest and Intelligent!
Now I understand, they lie because they are afraid, and seek to blame someone else, that will not slap them into a corner and tell them how that does not work. I was Cured once I reached six foot, even before I bought my first motorcycle.
It was not the education I wanted that I was denied, but it has served me well. I applied the skills I had, they work.
Now about the current lies. Autistic children grow and become adults, the current skills package offered does not meet the needs of future adults. It is all your fault, just quit being different! Just be like everyone else!
Nothing has changed in fifty years, but Autism Speaks has a New Press Release! They have Needs, and it meetsTheir Needs!
Life is hard for a failed Eugenics Program running a Charity Fraud, but times are tough all over.
My life could have been a lot better. I could have learned a lot sooner, it is as Temple Grandin says, we learn from Mentors. They are hard to find when you are a minor minority. I missed out on a lot, but got by well on just a little of being me.
We are on our own. we can only help ourselves and each other.
I have been thinking of a Center For Applied Autism. How being us could work. We have some very good traits to work with.
Hi Inventor, have you seen this topic It is about forming a collaborative aspie project. You should post about the Center for Applied Autism there. We could perhaps cut into Autsprecher's profits. Though I'm thinking we should call it "We Speak for Autism!"
I didn't see where DaLurker was making that assumption. He was correcting his interpretation of Inventor's statement that the childhood disorder was no longer severe in adulthood.
And he was also making it clear that although Inventor may not need research for a cure, for himself, that there are others that do. He wasn't making an argument that everyone wants a cure.
I provided evidence that it is still severe into adulthood, per that 1 in 110, that are measured. The 1 in 110 that are measured for the most part, with actual autism disorder/PDD NOS, are developmentally disabled; some may gain independence in life, but current government statistics, don't bear out that it is only a tiny minority that won't gain independence, per the statistics provided.
And, I also provided evidence that the results of Autism Speaks research, is already helping in earlier diagnosis and intervention, that has been evidenced to lead to greater levels of independence for many of those 1 in 110, that might not have that opportunity for greater levels of independence.
There is abundant evidence that not everyone with autism wants a cure, and Autism Speaks is well aware of it.
They make it clear in their mission statement that they seek to help those whom struggle Autism, not those that don't struggle with Autism.
For those who are of the opinion that it is a societial issue of discriminatory practices, for just a difference in thought, rather than an inherent disabling medical issue, much of their personal struggles are with society, not an inherent medical condition that some do find disabling.
The diagnostic features listed in the full text of the DSMIV TR describe Aspergers as a disabling condition. It is the reason many go in for a diagnosis. If one has a professional diagnosis for an ASD that does not disable them in life, in anyway, they were not likely properly diagnosed.
http://sites.google.com/site/gavinbollard/about-aspergers/dsm-iv-criteria-for-aspergers
Autistic traits don't cut off like a faucet if someone is not diagnosed with the disabling disorder; there are many more individuals that aren't diagnosed, that may have most of the criteria, at a degree of impairment, that they may not consider disabling in life, and might not warrant a diagnosis if they went it for one.
While they might refer to themselves as Autistic, it doesn't necessarily mean they have symptoms that work together to significantly disable them in major areas of life.
And beyond that, there are many people that may have most of the criteria, at some degree, that don't associate themselves with anything to do with Autism.
This varies from individual to individual. No one has an answer for autism that is going to work for everyone. Some need a great deal more help than others in life, that is crystal clear, and reflected in Autism Speaks mission statement.
Da-Lurker is not as verbose as I am, but this was basically the gist of his comment. Whatever degree of disability, if any, that Inventor associates with his Autism is not identical to anyone elses Autism. No two cases are the same, not even in identical twins.
In reality, Autism Speaks acknowledges this point to a greater degree, than some self-advocacy groups do, in respect to the suggestion that the disorder is not a medically disabling one for many whom are diagnosed and measured by government statistics.
Autism Speaks was all about Genetic Testing, and the only reason in the real world is Abortion. There is no Genetic Repair, as all those Downes babies could tell you. They were looking for a marker, and only changed their story after it was shown to be impossible. It was their big shot, they missed, and have been trying to re-Brand their Eugenics Program.
The majority of their spending was to find a Genetic Cure, and Eradicate Autism.
I know, because I defended it. I defended them because I saw the dead end they were heading toward, and cheered them on, because rdos and myself were sure Neanderthal Genetics would show up.
We got a double hit, the defective autism genes of Autism Speaks were a match to The Neanderthal Genome Project. Sapiens do carry neanderthal genes, and they are most common in the autistic.
rdos was around long before anyone else, pointing out mental traits as being neanderthal related.
I disagreed, until I did some research to disprove him, and disproved myself.
Another was neanderthal did the cave paintings, back when sapiens were just another ape. Now today, from Coasta Del Sol Spain, 43,000 year old paintings of seals in caves, credited to neanderthal! Take That! You art impaired Sapes!
I got there through Climate History, Anthropology, Cultural Goods, rdos through mental traits, and the world did catch up after a bit.
Autism Speaks is still in confusion. They are having a problem with, Autistic Children Grow Up!
The stuttering Ds, Dx, disabled, diseased, disabling, but some are not disabled, that are Diagnosed?
Even Government Certified! They meet all criteria, and are happy and making "A"s! It used to be so easy to be a Psycholigist, if they could not write Cursive, they were a ret*d! Since keyboards, it is hard to tell who is the most ret*d.
I had it all, was horribly disabled, and mistreated, because I thought my teachers, other adults, were Honest and Intelligent!
Now I understand, they lie because they are afraid, and seek to blame someone else, that will not slap them into a corner and tell them how that does not work. I was Cured once I reached six foot, even before I bought my first motorcycle.
It was not the education I wanted that I was denied, but it has served me well. I applied the skills I had, they work.
Now about the current lies. Autistic children grow and become adults, the current skills package offered does not meet the needs of future adults. It is all your fault, just quit being different! Just be like everyone else!
Nothing has changed in fifty years, but Autism Speaks has a New Press Release! They have Needs, and it meetsTheir Needs!
Life is hard for a failed Eugenics Program running a Charity Fraud, but times are tough all over.
My life could have been a lot better. I could have learned a lot sooner, it is as Temple Grandin says, we learn from Mentors. They are hard to find when you are a minor minority. I missed out on a lot, but got by well on just a little of being me.
We are on our own. we can only help ourselves and each other.
I have been thinking of a Center For Applied Autism. How being us could work. We have some very good traits to work with.
The modern versions of the archaic variants of the Auts2 and Cadps2 gene found in Neanderthal DNA, are common in most human beings. The mutations of those genes are uncommon, even in Autistic individuals at 1 in 100.
The mutations have also been loosely associated with alcoholism and mental retardation. There are over one thousand other genetic associations with autism that aren't related to anything known about archaic versions of Neanderthal DNA.
There is currently more evidence that cigarette smoking in parents is associated with autism than neanderthals.
RDOS's theory posits that indigenous Africans lack neurodiversity, Autism is only one small portion of what he seeks to prove. However autism disorder exists in indigenous Africans, researched as and evidenced as not having Neanderthal DNA, so while Neanderthal DNA may be associated in some small way, it is already evidenced as not the origin of all cases of Autism.
The genetic research that Autism Speaks supports is science. Science neither wins or fails, it just produces results, and answers. This isn't a game that Autism Speaks is involved in, it is science.
With their support along with hundreds of others sources of support we now understand just how complex and varied the genetics associated with Autism are. It's something that wasn't known before the genetic research was started long before Autism Speaks came into the picture. Science rarely provides easy answers, for any neurological disorder.
Abortion is a legal issue completely separate from the science Autism Speaks supports; it is a woman's choice, and no concern of either Autism Speaks or the research scientists that they support.
Autism speaks has made it clear they are not supporting research for a prenatal test for autism.
If there is any concern there, it is with the for profit organizations that have already developed limited genetic screening tests for autism. The bottom line though, is the choice for Abortion and the reponsibility for that action, lies only with the individual with that legal right, no one else.
There is no evidence that Autism speaks is running a eugenics organization, or any of the other non-profit Autism Organizations in the US that support genetic research. Nor is there evidence that Autism Speaks has committed charity fraud. It doesn't exist.
If you know a place where to find this evidence, since no one else has found it, including the many third party organizations that monitor charities, please provide it, to enlighten all of us.
A Center for applied autism is a good idea, among the many that are currently in process to help individuals across the spectrum.
It could be of benefit to people across the spectrum. And, probably a good thing to focus on, other than Autism Speaks research, since they are already producing effective results, whether or not all the answers provided are easy ones.
The reality of the professionally diagnosed cases of autism, per measured statistics, is that the majority of adults are not on their own, and are dependent on families or other sources of support from society for survival. Some, do rely on themselves for independence, and some do gain support from other autistics, but many do not have this advantage in life.
However, diagnosed cases are clinically described, in the DSM IV TR, as impairments that are a considerable source of disability. There are likely many individuals that have symptoms that aren't as disabling that allow one to gain independence in life.
Supposedly Autism Speaks is trying to clean up their image, but until they stop their autism smear campain and start promoting a more positive outlook for autism, I'm not buying it. If they want to help autistic people so badly, why not finacially assist my education?
_________________
Spell meerkat with a C, and I will bite you.
Screw that positivity crap. Where are the "positive" outcomes for ALL autistics? They're not there to finance your education. Why don't you look for grants or scholarships? Why don't you get a job. You know, have a positive outlook. Learn the value of work. I've been working for a long while, putting all that money towards paying off my student loans while I live at home, even though my schooling didn't get me anywhere.
It would be interesting to find out whether or not they were helping fund abortions or sterilizations. I wouldn't put it past them.
Yeah right?
I just sat in on a graduate class and the professor admitted that educations were loosing their value. The Ivy League is restructuring education and admitting that the legacy education system doesn't work anymore. Though I doubt that they are doing enough unless they plant to continue to change year to year. Most people I know are going to school because someone is paying for it and they can get it for free and don't understand the value that is in education isn't the paper they receive, but in the inspiration to innovate. Better schools inspire more innovation BTW and sadly cost seems to be a contributing factor. An education on living and producing in a world that hasn't yet become and how to adapt is likely the best degree you could get. Don't study to become anyone that is replaceable by elance or outsourcing, assume now that your job prospects are gone.
The other thing affecting education is that people who are smart enough to know what they need to learn probably aren't paying for an education because it can't teach them enough for what it costs. So bat for lashes could IMO just not have an idea of where to fit in. Remember aspies analyze more than they emotionalize. Our education ranks 25/30 among developed countries and our confidence is #1! LMFAOROFLMAOROFLLAMAO! So there are tons of over confident ppl willing to invest in worthless educations and that's the truth! Assume we are a failed nation. I'm going to write a book and try to save what's left with my ideas. But while I am very well educated, I don't have much in the way of paper or ppl in my network who I could talk to about it... so it's anyone's guess as to whether anyone will listen to me or not. I do however have some rather impressive ppl in my family tho. Perhaps that will lend me some credibility.
Screw that positivity crap. Where are the "positive" outcomes for ALL autistics? They're not there to finance your education. Why don't you look for grants or scholarships? Why don't you get a job. You know, have a positive outlook. Learn the value of work. I've been working for a long while, putting all that money towards paying off my student loans while I live at home, even though my schooling didn't get me anywhere.
My childhood was pure Hell, but I didn't let that stop me. And besides, there are more HF autistic people than LF autistic people. Creating a smear campain against autism is only encouraging hate mongering and not helping any. Even charaties for actual diseases that actualy kill people don't dehumanize people with the condition in the same way Autism Speaks does with autistic people. Most low functning people choose to stay in their "own world" becuase the real world dosen't treat them very well. And if Autism Speaks truely wanted to help autistic people, they WOULD pay for my education.
_________________
Spell meerkat with a C, and I will bite you.
Screw that positivity crap. Where are the "positive" outcomes for ALL autistics? They're not there to finance your education. Why don't you look for grants or scholarships? Why don't you get a job. You know, have a positive outlook. Learn the value of work. I've been working for a long while, putting all that money towards paying off my student loans while I live at home, even though my schooling didn't get me anywhere.
My childhood was pure Hell, but I didn't let that stop me. And besides, there are more HF autistic people than LF autistic people. Creating a smear campain against autism is only encouraging hate mongering and not helping any. Even charaties for actual diseases that actualy kill people don't dehumanize people with the condition in the same way Autism Speaks does with autistic people. Most low functning people choose to stay in their "own world" becuase the real world dosen't treat them very well. And if Autism Speaks truely wanted to help autistic people, they WOULD pay for my education.
http://www.autismspeaks.org/science/gra ... ellowships
TheSunAlsoRises
Screw that positivity crap. Where are the "positive" outcomes for ALL autistics? They're not there to finance your education. Why don't you look for grants or scholarships? Why don't you get a job. You know, have a positive outlook. Learn the value of work. I've been working for a long while, putting all that money towards paying off my student loans while I live at home, even though my schooling didn't get me anywhere.
My childhood was pure Hell, but I didn't let that stop me. And besides, there are more HF autistic people than LF autistic people. Creating a smear campain against autism is only encouraging hate mongering and not helping any. Even charaties for actual diseases that actualy kill people don't dehumanize people with the condition in the same way Autism Speaks does with autistic people. Most low functning people choose to stay in their "own world" becuase the real world dosen't treat them very well. And if Autism Speaks truely wanted to help autistic people, they WOULD pay for my education.
It's likely that there are a great many more folks on the Broader Autism Phenotype, that are doing quite well. However, available statistics indicate that about 10% of Diagnosed Autistics are considered HFA/Aspergers, about 65% with PDDNOS, and the other approximate 25% with Autism Disorder, and the two very rare conditions of Retts Syndrome and Childhood Disintegrative Disorder.
http://en.wikipedia.org/wiki/Epidemiology_of_autism
Out of this number aspergers represents 3 out 10,000 people. Or about 5 percent of statistically measured cases of ASD's.
One wouldn't expect a charitible organization to devote a substantial portion of their resources to the statistically understood 5 percent of the group that they are hoping to provide some type of positive support for.
The government's methods for statistics are not comprehensive, so they likely don't capture all cases of Aspergers diagnoses in the US. Autism Speaks is funding research to capture the full picture with a comprehensive methodology for statistical analysis.
There are actual organizations associated with autism in the US, that one can apply for a limited number of scholarships to assist in attending a University; they can be found with a Google search.
These organizations do not focus on the mission of research, that Autism Speaks focuses on, that is vital, in hopes of helping those on the spectrum, whom need the potential for medical solutions to their problems, such as co-morbids that exist with regressive autism.
Many of the realities of those measured diagnosed cases of ASD's are not easy ones. The government measures intellectual disability in 41 percent of the cases, and regressive autism has been measured recently in about half of the cases of autism disorder cases studied. There are hundreds of thousands of individuals diagnosed with an ASD, considered to have a developmental disability.
While the funding of your college education is important to you, there are others whom may not have the opportunity to gain self help abilities, without further research, and the therapies that are currently available.
There is no way any private charitable organization can fund thousands of individuals college educations. A conservative average cost is about $10,000 a year for a bachelors degree at a 4 year public University.
Funding the college education for about 2000 college students nation wide, which amounts to about 400 people in each state, would equal the entire amount of money Autism speaks spends on research in hopes to help the approximate 1 to 1.5 million estimated individuals understood to have an ASD.
Once one does the numbers it is fairly easy to understand why college scholarships are not easy to come by. The needs of the thousands do not outweigh the needs of the hundreds of thousands.
The government is the best source of assistance available for college, for many, through grants.
It is well worth it to pursue every avenue in gaining financial assistance for college.
Here is just one source associated with Autism; there are many more.
Good Luck.
http://www.disaboom.com/scholarships/autism-scholarships
My childhood was pure Hell, but I didn't let that stop me. And besides, there are more HF autistic people than LF autistic people. Creating a smear campain against autism is only encouraging hate mongering and not helping any. Even charaties for actual diseases that actualy kill people don't dehumanize people with the condition in the same way Autism Speaks does with autistic people.
HF does not exceed LF. Look at the statistics. And not all of those in the high-functioning categories are geniuses. Many are just scraping to get by, when it comes to the tasks they pursue. You shouldn't be so offended by their negative messages against the disability involved.
That's tragic for them. And it's not simply about being "treated" very well or not. They don't have the basic means/abilities to do various things. That's why cure is necessary and is non-negotiable.
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