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dalurker
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07 Feb 2012, 6:02 pm

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

You shouldn't be implying that autism is a childhood disorder that loses severity by adulthood.

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

What actual policy do you want them to have? Which autistic adults do you want hired and in power? What would you consider of the wishes of the autistic adults who aren't very publicized and who lack resources to get their ideas out there as much? Why won't you just admit that many on the spectrum aren't doing anywhere near as well as you due to disability, which makes the "eugenics" goal of Autism Speaks, which you call it, seem like the way to get the unfortunate autistics the opportunity to have a decent life?



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07 Feb 2012, 7:01 pm

@dalurker.very well constructed arguement.but it is still an assumtion,not actual fact.


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07 Feb 2012, 7:11 pm

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

You shouldn't be implying that autism is a childhood disorder that loses severity by adulthood.

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

What actual policy do you want them to have? Which autistic adults do you want hired and in power? What would you consider of the wishes of the autistic adults who aren't very publicized and who lack resources to get their ideas out there as much? Why won't you just admit that many on the spectrum aren't doing anywhere near as well as you due to disability, which makes the "eugenics" goal of Autism Speaks, which you call it, seem like the way to get the unfortunate autistics the opportunity to have a decent life?
have they showed any sign of helping those people?



aghogday
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07 Feb 2012, 7:30 pm

vermontsavant wrote:
@dalurker.very well constructed arguement.but it is still an assumtion,not actual fact.


Here are the statistics and facts published by the Autism Society of America that ASAN has recently teamed up with.

http://www.autism-society.org/about-autism/facts-and-statistics.html

Quote:
Facts and Statistics
•1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.1
•Prevalence is estimated at 1 in 110 births.2
•1 to 1.5 million Americans live with an autism spectrum disorder.3
•Fastest-growing developmental disability; 1,148% growth rate.4
•10 - 17 % annual growth.5
•$60 billion annual cost.6
60% of costs are in adult services.7
Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention.8
•In 10 years, the annual cost will be $200-400 billion.9
•1 percent of the adult population of the United Kingdom have an autism spectrum disorder.10
•The cost of autism over the lifespan is 3.2 million dollars per person.11
Only 56% of students with autism finish high school.12
•The average per-pupil expenditure for educating a child with autism was estimated by SEEP to be over $18,000 in the 1999-2000 school year. This estimate was nearly three times the expenditure for a typical regular education student who did not receive special education services.13
•The unemployment rate for people with disabilities was at 14%, compared with 9% for people without a disability. Additionally, during the same period, only 21% of all adults with disabilities participated in the labor force as compared with 69% of the non-disabled population.14


It's no assumption, it's backed up by research, and publicized across the country by various Autism Organizations, not just by Autism Speaks.

Notice the statistic that 2/3 the cost of lifelong care can be reduced by early diagnosis and intervention.

60% of the costs associated with autism are in adult services.

And the statistic that 56 percent of measured autistic individuals do not finish school.

Disabling symptoms of autism exist into adulthood for thousands of individuals with autism, government statistics prove this out.

Autism Speaks has supported research that has led to the ability for earlier diagnosis and intervention through the development of a new screening checklist.

While that might seems like an insignifcant contribution; in understanding the big picture of autism, and how important early diagnosis and intervention is to the long term independence of autistic individuals, it is vital research.



Last edited by aghogday on 07 Feb 2012, 8:51 pm, edited 1 time in total.

aspie48
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07 Feb 2012, 8:31 pm

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

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

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

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

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

This is the only answer, because we say so!

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

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

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

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

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

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

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

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

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

+1 you said a lot of what i was thinking but couldn't put in words.



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07 Feb 2012, 9:42 pm

aspie48 wrote:
Inventor wrote:
Research funded by autism speaks could fix the economy, bring full employment, and a faster than light drive, but to date there has been nothing produced, and a lot spent.

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

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

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

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

This is the only answer, because we say so!

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

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

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

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

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

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

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

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

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

+1 you said a lot of what i was thinking but couldn't put in words.


Autism Speaks is not a Eugenics group nor have they ever suggested they were a eugenics group.

It's something else one can look up on google, and find the truth on. They just recently were interviewed and provided clear input that they are not funding research for a prenatal test, and respected the positive traits of autism that some individuals with autism find strength in.

They organized and sought to eradicate the negative symptoms of a disorder that caused some children the inabilty to communicate with the rest of the world.

That is not Eugenics any more than those research organizations that seek to eradicate the negative symptoms associated with Epilepsy.

It is not the Epileptic who bear the struggles of those symptoms associated with Epilepsy that these organizations seek to eliminate nor autistics that bear the struggles with their symptoms associated wtih Autism.

The 340K supporters are family and friends of Autistics, whom join their voices together, in support and hope those lives will be ones where potential is fulfilled not limited.

For those whom aren't served by their mission, it is understandable that the organization is of no use to them; however, their mission is vital to others whom are served by it. And, those individuals do number in the hundreds of thousands, both families of autistics and autistics.

There has been no objective evidence produced, in this thread, that shows any current significant need to be wary of the organization. Ignore yes, but wary no.

The support they provide as also helped this site to flourish with additional valuable information and education through the videos that have been produced for this website by the owner. All though there was great anxiety produced by that support in the beginning, it is now just an improvement that has blended into the background.

It is human nature not to miss the benefits of life until they are are gone. Autism Speaks plays a background part of that even here as we speak. The organization is not looking for admiration, they are too busy producing results.



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08 Feb 2012, 1:56 am

aghogday wrote:
...

The support they provide as also helped this site to flourish with additional valuable information and education through the videos that have been produced for this website by the owner. All though there was great anxiety produced by that support in the beginning, it is now just an improvement that has blended into the background.

....

Rubbish.


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aghogday
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08 Feb 2012, 3:08 am

lau wrote:
aghogday wrote:
...

The support they provide has also helped this site to flourish with additional valuable information and education through the videos that have been produced for this website by the owner. Although there was great anxiety produced by that support in the beginning, it is now just an improvement that has blended into the background.

....

Rubbish.


Perhaps you don't see any value in the information provided on the videos on this site, but others have provided feedback that they do. It's good to see young adults speaking their points of views that are autistic, rather than the information, being restricted as it normally is in the media, to those that talk about autism from the outside.

It's a venue that is also allowing opportunities for interviews like the one recently done with the Markram's, and one planned for Cohen, that wouldn't likely be possible if it were limited to the efforts of just one autistic person, and several volunteers, attempting to run a website this large.

The interactive opportunities for questions derived from the people that visit this site, to those that research the condition of Autism, is definitely a valuable step in communication, that wasn't available before.

The community here has been very supportive of those recent efforts; what matters more than whom provides support, is that the efforts do exist, and people appreciate them.

This change appears to be a good one.



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08 Feb 2012, 6:53 am

@aghogday.very well said but not my point.i dont doubt that early intervention,diagnosis and treatment helps people and saves society money.i wasnt calling that assumtion.i was talking about cure.me personaly im pro cure(for me)but i dont push that on other people because i know how they feel about cure.many N.T's would assume that all aspies and hfa's would want to be cured.i think its arrogant to assume that people with different types of autism would also want a cure.that was the assumtion i was questioning


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08 Feb 2012, 12:55 pm

vermontsavant wrote:
@aghogday.very well said but not my point.i dont doubt that early intervention,diagnosis and treatment helps people and saves society money.i wasnt calling that assumtion.i was talking about cure.me personaly im pro cure(for me)but i dont push that on other people because i know how they feel about cure.many N.T's would assume that all aspies and hfa's would want to be cured.i think its arrogant to assume that people with different types of autism would also want a cure.that was the assumtion i was questioning


When speaking of a cure for Autism, Neuro-typicals are usually speaking in terms of Kanner's Classic, Childhood Dis-Integrative Disorder, Multiplex Disorder and Lower to Mid-Functioning Autsim(for want of better words to describe the condition) rather than Aspergers and High Functioning ASDs.

IF you concentrate on those who desire a cure and make those who are against a cure irrelevant or obsolete; an aggressive plan to find a cure for Autism can begin.

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08 Feb 2012, 4:26 pm

@sunalsorises.i know and exactly my point.the danger of assumtions.as far as neurotypicals today some may associate cure with severe autism,still many others associate it with all autism.im not anti cure,but im disapointed with arguements on this forum lacking concrete evidence.we endlessly criticize the mistakes of doctors past,but we cant even question our own perceptions.i am the only one here who bares witness to that truth


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08 Feb 2012, 6:14 pm

vermontsavant wrote:
@aghogday.very well said but not my point.i dont doubt that early intervention,diagnosis and treatment helps people and saves society money.i wasnt calling that assumtion.i was talking about cure.me personaly im pro cure(for me)but i dont push that on other people because i know how they feel about cure.many N.T's would assume that all aspies and hfa's would want to be cured.i think its arrogant to assume that people with different types of autism would also want a cure.that was the assumtion i was questioning


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.

Quote:
The disturbance must cause clinically significant impairment in social adaptation, which in turn may have a significant impact on self-suffiency or on occupational or other important areas of functioning (Criterion C). The social deficits and restricted patterns of interests, activities, and behavior are the source of considerable disability.


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.



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09 Feb 2012, 3:26 pm

here was point what makes you so sure that people with severe autism are just waiting to be cured.and what makes you so sure evey aspie resents a cure(i dont).i think people are barking up the wrong tree all together.


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09 Feb 2012, 4:53 pm

vermontsavant wrote:
here was point what makes you so sure that people with severe autism are just waiting to be cured.and what makes you so sure evey aspie resents a cure(i dont).i think people are barking up the wrong tree all together.


There are some that do and some that don't. That's a fact. Both views have been expressed on this website. On an individual basis, it is up to the individual. However, research is not going to be halted, because some don't want it for themselves. If they don't need it, if it becomes available, it won't be an issue for them.

None of us have an authority to speak for the individual needs of others, except for legal guardians, in the case of those that are minors, or those that do not have the capacity to communicate for themselves.



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09 Feb 2012, 5:14 pm

aghogday wrote:
vermontsavant wrote:
here was point what makes you so sure that people with severe autism are just waiting to be cured.and what makes you so sure evey aspie resents a cure(i dont).i think people are barking up the wrong tree all together.


There are some that do and some that don't. That's a fact. Both views have been expressed on this website. On an individual basis, it is up to the individual. However, research is not going to be halted, because some don't want it for themselves. If they don't need it, if it becomes available, it won't be an issue for them.

None of us have an authority to speak for the individual needs of others, except for legal guardians, in the case of those that are minors, or those that do not have the capacity to communicate for themselves.
thats my whole point,everyone here thinks they can speak for everyone else.thats exactly what im criticizing.as far as research i have no problem with that


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09 Feb 2012, 5:28 pm

vermontsavant wrote:
aghogday wrote:
vermontsavant wrote:
here was point what makes you so sure that people with severe autism are just waiting to be cured.and what makes you so sure evey aspie resents a cure(i dont).i think people are barking up the wrong tree all together.


There are some that do and some that don't. That's a fact. Both views have been expressed on this website. On an individual basis, it is up to the individual. However, research is not going to be halted, because some don't want it for themselves. If they don't need it, if it becomes available, it won't be an issue for them.

None of us have an authority to speak for the individual needs of others, except for legal guardians, in the case of those that are minors, or those that do not have the capacity to communicate for themselves.
thats my whole point,everyone here thinks they can speak for everyone else.thats exactly what im criticizing.as far as research i have no problem with that


That would be my opinion, regardless of the existence or awareness of any advocacy and/or research organization.