This is a place to talk about autism and the impact that it has on our lives. I am mostly interested in making legislative changes to enchance the education of our children.
In keeping with a spirit that unfortunately appears to be a continuing effort to unfairly discredit the Autism Speaks organization this latest attempt per the petition against autism speaks, provides remarks in the petition letter that state that autism speaks goals of prevention and cure are against the American with Disabilities Act, because the act states that disability is a natural part of the human experience.
That is incorrect as the ADA defines many disorders like Muscular Dystrophy, Cerebral Palsy, Cystic Fibrosis, and many others as disabilities that foundations continue to fund research to attempt to prevent and cure these disabilities and associated conditions that individuals struggle with, if possible, to enhance the full potential of the natural experience of the lives of these individuals. The government supports the ADA and the Combating Autism Act that also funds research into potential prevention and cures associated with autism spectrum disorders.
Unfortunately some in the Autism community continue to attack the missions and goals of Autism Speaks through rhetoric most of which is not evidenced by facts, but an attempt to disrupt their fundraising efforts to help those across the spectrum, that attempts to provide additional awareness and potential higher levels of acceptance of autism spectrum disorders, is not a constructive effort to help all individuals across the spectrum.
And finally, in the petition words are used to suggest that Autism Speaks is attempting to prevent students with disabilities instead of preventing disabilities that students have. Autism Speaks has never stated that they wished to prevent the existence of any human being. The organization supports and fund research to better diagnose, prevent, treat, or cure symptoms if possible that some individuals with autism struggle with such as GI problems, immune system problems, abnormal brain growth recently associated specific to male children with regressive autism as well as providing a great deal of funding for research designed to help adults on the autism spectrum as well as all others on the spectrum, in a global effort, not just a national effort.
Autism Speaks funding restrictions and goals for 2012 are clearly delineated on their website, that provides no funding for prenatal testing. The organization has clearly stated in a public statement, that can be found on the wrong planet site, that they apologize for any miss steps or actions in the past that may have offending anyone, and that they are not funding a prenatal test for autism.
This issue has been discussed on the thautcast facebook page, and the overwhelming majority of individuals are behind autism speaks effort that responded in that neurodiverse community, where voices are not censored. The overall concerns associated with ASD's are too varied and expansive to be properly addressed by any one organization. All missions and goals benefiting people on the spectrum are vital, and deserve the up most respect, not a deconstructive effort.
I encourage everyone to read ThAutcast page for yourselves, because "the overwhelming majority" of people on that page actually are NOT in support of Autism Speaks. To me, the comments on the age are mixed, with more people not approving of Autism Speaks marketing the items to fund a CURE for Autism (which is right on the boxes). My concern is not with all the supposedly good stuff Autism Speaks and other cure-oriented organizations are doing. I am talking about the possible damage to students who go to school having to deal with autism-related stuff, marketed to cure them, in their faces every day. Other people, including on the same post by Landon Bryce, point out that the items can be used by bullies to help them target Autistic students. The link to TheAutcast is here: http://www.facebook.com/photo.php?fbid=407808692610080&set=a.151975874860031.32680.127343790656573&type=1&theater Follow links to other people's Facebook pages to find additional, mostly nonsupportive of Autism Speaks, comments. I have comments turned off on my blog so am not censoring any one person; I do not have time or energy to moderate all comments. My blog has been like that since 2009 except for a short period of about 3 weeks when I had comments turned on. And, in regard to FACTS, it actually IS a fact that on the items, the blurbs clearly read that 6% of the proceeds will go to research to CURE autism. Many of us in the Autistic Community and the community of parents and supporters of neurodiversity, do NOT want a cure for autism. And we don't want those items in our schools. Autism Speaks can surely come up with other ways of fundraising other than targeting students with this stuff, either directly or indirectly.
Paula, I was referring to the first article on thautcast page that actually details your points of opposition toward the program that people took offense to. It is apparent that the majority of those over 280 comments are opposed to taking the opportunity away from people that want to purchase the school supplies.
Thautcast page is definitely overall an anti-autism speaks tinted website however the difference is it provides a uncensored allowance of differing viewpoints.
Your second article provided only a picture of walmart pen, which is not offensive in the sense that you didn't suggest in the topic picture that Walmart should not provide an opportunity for people to buy the pen, until much later, when you linked your petition.
You did censor the first comment on the issue on your blog, as one was allowed after that comment. However I have been more than pleased with your allowance of my opinions before that point. Some of the other sites you linked to censored that opinion as well as many of the other opinions that I have provided in the past that were respectful but in disagreement. It is most often those connected with ASAN that censor the opinions. Lydia has been the most accommodating individual to date, as well as Mr. Bryce, that as far as I know isn't directly involved with ASAN.
I suspect that the Christian values that you and Lydia share have something to do with that.
I have provided a exhaustive list of the pros of Autism Speaks and the unfair criticism that has been provided of the organization, and have yet to have those points refuted, except for Lydia that corrected my over sight that there was one active member on ASA's board of directors with an Asperger diagnosis.
It is likely that you are going to find agreement on your petition for those individuals that hate autism speaks, which might number a thousand people, and provides a good indication of how many people really hate the organization enough to see their efforts blocked to help those in the full autism community.
But never the less, there are likely a million or more supporters among the over one million individuals in the much larger community of autism that support the effort. The most constructive effort is not to buy the pens or boycott them with those that share your ideology. I support your right to attempt to ban the sale of the pens, I just don't agree with it based on the facts that I have presented, and see it as a deconstructive effort for the autism community as a whole.
And to Mary below I addressed your point on risperdal in Thautcast blog, and provided a link in support of my point. Risperdal is an FDA approved drug, approved only for limited use for some behaviors associated with ASD's, such as self injury, that Autism speaks provides information on along with all other approved treatments, but leaves the decision of use up to the physician and the family/patient. If you are asking me to respond to your facebook page, I don't have the ability to do that, as I checked the page, and apparently one must be in your friends circle to be able to comment, which I certainly understand.
And finally to Paula, if I don't get a chance to respond further to your comments on Thautcast, there was at least one person there that appreciated the information I provided; your suggestion to me to post my comments on my own blog was a little inappropriate, but I appreciate that it appears you came back and provided a little more clarification of your intent in that the comment was not intended to censor me there.
I've got pretty thick skin, held my child until he died as a result of his own co-morbid condition that I hope that Autism Speaks can fund to CURE if possible for future generations, and been close to death before, myself, along with circumstances that may be worse than death; there is not much that any human being can do to intimidate me or shoo me away; you may eventually have a different perspective as well.
If you go to the petition site, you can also see a variety of comments. These are supportive of the petition, but they are not all the same topic and a variety of issues are discussed. I feel a sense of awe at reading these very thoughtful comments, some touching on areas I had not even thought of when I posted the petition. http://www.change.org/petitions/walmart-don-t-target-autstic-children-remove-autism-speaks-school-supplies-from-your-stores
Oh poor Autism Speaks spending billions of dollars promoting drugs and slandering the Autistic population. Now they will have to spend more money paying for PR stories that don't allow comments and less money supporting companies that fraudulently market drugs like Ortho-Mcneil-Janssen. Kate Mia, I would be honored if you would read and critique the sources contained in my note about "Ortho-Mcneil-Janssen and Autism Speaks" https://www.facebook.com/notes/mary-e-tormey/ortho-mcneil-janssen-and-autism-speaks/3557440572526. Also please read my note on "Empathy and Autism" and explain why it is so unfair of us to respond to the "information" they are spending huge amounts of donated money to spread. https://www.facebook.com/notes/mary-e-tormey/empathy-and-autism/3105178786264 Thank you.
Mary, since you did not address your second point on the thautcast page, where I was able to respond to the first point, I will respond to the second point here since I don't have the ability to respond on your facebook page. There is research that suggests that some individuals with aspergers syndrome experience a great deal of "affective" empathy and tend to have more problems with "cognitive" empathy. However it varies among individuals, as empathy is not a static quality that human beings are born with; it can increase or decrease depending on experiences and what one feeds their brain, for most everyone in the general population.
Studies have shown that there are specific activities that may increase empathy such as taking care of a child or animal, and other activities like playing violent video games and avoiding face to face interaction that may decrease empathy among some. And there are neuro-chemical/hormonal changes that occur along with behaviors conducive to or not conducive to levels of empathy.
The general public and the overwhelming majority of the entire autism community, numbering in the millions, has not expressed offense that research is being done to potentially help children in the future, and some do share empathy about the more serious associated symptoms of autism and co-morbid conditions, that some do struggle with and even, in part, can result in death in a small minority of cases.
I defend your right to attempt to ban these items for sale, in your concern for your feelings and those that share your feelings, however, I see it evidenced as 0% chance of successful based on the huge response of support for the effort in the broader community of autism; it would be more effective, in my opinion to boycott the items, rather than what seems as a deconstructive effort that would limit rights of the larger majority of the general population and broader autism community that have shown enthusiasm in the awareness, acceptance, and fundraising effort.
It would be nice if everyone could work together and consider the feelings of everyone when approaching an issue like this, before action is taken. But, generally that is not part of human nature, when one is attached to one ideology or another, applicable to most anyone on the spectrum or off the spectrum.
Autism Speaks has been guilty of not pursuing input of how their actions of the past might have affected others, but the same is evident among those that have criticized autism speaks efforts.
The Autism cure ideology has been a part of the fabric of US society ever since the early 60's, initiated by the Autism Society of America, with the puzzle icon, and the end of the refrigerator mother theory, that is credited to that organization's founder, who also started the first research organization to search for a cure for autism.
The Autism Society still provides information on FDA approved chelation methods of treating heavy metal poisoning on their website that the associated Autism Research Institute supports along with the Defeat Autism Now DAN philosophy of treating autism. However they are not telling anyone on their website to pursue that avenue without appropriate medical consultation.
An issue I see is Autism Speaks does not meet a standard significantly lower than any of these other organizations that support a cure ideology, however they are continually attacked by the ASAN organization for supporting a cure ideology, in the larger public arena, while the Autism Society supporting cure ideology is endorsed by the ASAN organization. And additionally, the Autism Society does not meet or exceed some of the standards that autism speaks is admonished for on the fact sheet on the ASAN website.
This is an encouraging effort quoted and linked below to move forward to bridge some of these barriers of communication and understanding for a more cooperative effort spanning the broad autism community. :)
"The Autism Society wants to bring together all of the major autism organizations to establish a series of joint goals.
“The infighting that a lot of times characterizes the autism community needs to stop,” said Scott Badesch, president of the Autism Society. “Until we come together, we’re not going to be able to move the needle on enhancing autism services.”
Tension has been brewing for years with parents and even professionals at odds over everything from possible causes of the developmental disorder to whether precious dollars should be spent on research or services for those on the spectrum.
As a result, Badesch said he sees many other interest groups getting a stronger reception locally and in Congress, citing elderly Americans and the gay and lesbian community as examples. By working together with a united front, Badesch said he hopes autism advocates can be more productive.
The Autism Society is calling for leaders of national organizations to come together in the same way that many companies, for example, work together through industry trade groups. While each organization would retain its own agenda and perspective, the community could work collectively to achieve specific objectives.
Badesch’s group is reaching out to other stakeholders at present to gauge interest. He said the initial response has been positive but declined to offer specifics."
In keeping with a spirit that unfortunately appears to be a continuing effort to unfairly discredit the Autism Speaks organization this latest attempt per the petition against autism speaks, provides remarks in the petition letter that state that autism speaks goals of prevention and cure are against the American with Disabilities Act, because the act states that disability is a natural part of the human experience.
ReplyDeleteThat is incorrect as the ADA defines many disorders like Muscular Dystrophy, Cerebral Palsy, Cystic Fibrosis, and many others as disabilities that foundations continue to fund research to attempt to prevent and cure these disabilities and associated conditions that individuals struggle with, if possible, to enhance the full potential of the natural experience of the lives of these individuals. The government supports the ADA and the Combating Autism Act that also funds research into potential prevention and cures associated with autism spectrum disorders.
Unfortunately some in the Autism community continue to attack the missions and goals of Autism Speaks through rhetoric most of which is not evidenced by facts, but an attempt to disrupt their fundraising efforts to help those across the spectrum, that attempts to provide additional awareness and potential higher levels of acceptance of autism spectrum disorders, is not a constructive effort to help all individuals across the spectrum.
And finally, in the petition words are used to suggest that Autism Speaks is attempting to prevent students with disabilities instead of preventing disabilities that students have. Autism Speaks has never stated that they wished to prevent the existence of any human being. The organization supports and fund research to better diagnose, prevent, treat, or cure symptoms if possible that some individuals with autism struggle with such as GI problems, immune system problems, abnormal brain growth recently associated specific to male children with regressive autism as well as providing a great deal of funding for research designed to help adults on the autism spectrum as well as all others on the spectrum, in a global effort, not just a national effort.
Autism Speaks funding restrictions and goals for 2012 are clearly delineated on their website, that provides no funding for prenatal testing. The organization has clearly stated in a public statement, that can be found on the wrong planet site, that they apologize for any miss steps or actions in the past that may have offending anyone, and that they are not funding a prenatal test for autism.
This issue has been discussed on the thautcast facebook page, and the overwhelming majority of individuals are behind autism speaks effort that responded in that neurodiverse community, where voices are not censored. The overall concerns associated with ASD's are too varied and expansive to be properly addressed by any one organization. All missions and goals benefiting people on the spectrum are vital, and deserve the up most respect, not a deconstructive effort.
R/Kate
I encourage everyone to read ThAutcast page for yourselves, because "the overwhelming majority" of people on that page actually are NOT in support of Autism Speaks. To me, the comments on the age are mixed, with more people not approving of Autism Speaks marketing the items to fund a CURE for Autism (which is right on the boxes). My concern is not with all the supposedly good stuff Autism Speaks and other cure-oriented organizations are doing. I am talking about the possible damage to students who go to school having to deal with autism-related stuff, marketed to cure them, in their faces every day. Other people, including on the same post by Landon Bryce, point out that the items can be used by bullies to help them target Autistic students. The link to TheAutcast is here: http://www.facebook.com/photo.php?fbid=407808692610080&set=a.151975874860031.32680.127343790656573&type=1&theater Follow links to other people's Facebook pages to find additional, mostly nonsupportive of Autism Speaks, comments. I have comments turned off on my blog so am not censoring any one person; I do not have time or energy to moderate all comments. My blog has been like that since 2009 except for a short period of about 3 weeks when I had comments turned on. And, in regard to FACTS, it actually IS a fact that on the items, the blurbs clearly read that 6% of the proceeds will go to research to CURE autism. Many of us in the Autistic Community and the community of parents and supporters of neurodiversity, do NOT want a cure for autism. And we don't want those items in our schools. Autism Speaks can surely come up with other ways of fundraising other than targeting students with this stuff, either directly or indirectly.
ReplyDeletePaula, I was referring to the first article on thautcast page that actually details your points of opposition toward the program that people took offense to. It is apparent that the majority of those over 280 comments are opposed to taking the opportunity away from people that want to purchase the school supplies.
DeleteThautcast page is definitely overall an anti-autism speaks tinted website however the difference is it provides a uncensored allowance of differing viewpoints.
Your second article provided only a picture of walmart pen, which is not offensive in the sense that you didn't suggest in the topic picture that Walmart should not provide an opportunity for people to buy the pen, until much later, when you linked your petition.
You did censor the first comment on the issue on your blog, as one was allowed after that comment. However I have been more than pleased with your allowance of my opinions before that point. Some of the other sites you linked to censored that opinion as well as many of the other opinions that I have provided in the past that were respectful but in disagreement. It is most often those connected with ASAN that censor the opinions. Lydia has been the most accommodating individual to date, as well as Mr. Bryce, that as far as I know isn't directly involved with ASAN.
I suspect that the Christian values that you and Lydia share have something to do with that.
I have provided a exhaustive list of the pros of Autism Speaks and the unfair criticism that has been provided of the organization, and have yet to have those points refuted, except for Lydia that corrected my over sight that there was one active member on ASA's board of directors with an Asperger diagnosis.
It is likely that you are going to find agreement on your petition for those individuals that hate autism speaks, which might number a thousand people, and provides a good indication of how many people really hate the organization enough to see their efforts blocked to help those in the full autism community.
But never the less, there are likely a million or more supporters among the over one million individuals in the much larger community of autism that support the effort. The most constructive effort is not to buy the pens or boycott them with those that share your ideology. I support your right to attempt to ban the sale of the pens, I just don't agree with it based on the facts that I have presented, and see it as a deconstructive effort for the autism community as a whole.
And to Mary below I addressed your point on risperdal in Thautcast blog, and provided a link in support of my point. Risperdal is an FDA approved drug, approved only for limited use for some behaviors associated with ASD's, such as self injury, that Autism speaks provides information on along with all other approved treatments, but leaves the decision of use up to the physician and the family/patient. If you are asking me to respond to your facebook page, I don't have the ability to do that, as I checked the page, and apparently one must be in your friends circle to be able to comment, which I certainly understand.
And finally to Paula, if I don't get a chance to respond further to your comments on Thautcast, there was at least one person there that appreciated the information I provided; your suggestion to me to post my comments on my own blog was a little inappropriate, but I appreciate that it appears you came back and provided a little more clarification of your intent in that the comment was not intended to censor me there.
I've got pretty thick skin, held my child until he died as a result of his own co-morbid condition that I hope that Autism Speaks can fund to CURE if possible for future generations, and been close to death before, myself, along with circumstances that may be worse than death; there is not much that any human being can do to intimidate me or shoo me away; you may eventually have a different perspective as well.
R/Kate
If you go to the petition site, you can also see a variety of comments. These are supportive of the petition, but they are not all the same topic and a variety of issues are discussed. I feel a sense of awe at reading these very thoughtful comments, some touching on areas I had not even thought of when I posted the petition. http://www.change.org/petitions/walmart-don-t-target-autstic-children-remove-autism-speaks-school-supplies-from-your-stores
ReplyDeleteOh poor Autism Speaks spending billions of dollars promoting drugs and slandering the Autistic population. Now they will have to spend more money paying for PR stories that don't allow comments and less money supporting companies that fraudulently market drugs like Ortho-Mcneil-Janssen. Kate Mia, I would be honored if you would read and critique the sources contained in my note about "Ortho-Mcneil-Janssen and Autism Speaks" https://www.facebook.com/notes/mary-e-tormey/ortho-mcneil-janssen-and-autism-speaks/3557440572526. Also please read my note on "Empathy and Autism" and explain why it is so unfair of us to respond to the "information" they are spending huge amounts of donated money to spread. https://www.facebook.com/notes/mary-e-tormey/empathy-and-autism/3105178786264
ReplyDeleteThank you.
Mary, since you did not address your second point on the thautcast page, where I was able to respond to the first point, I will respond to the second point here since I don't have the ability to respond on your facebook page. There is research that suggests that some individuals with aspergers syndrome experience a great deal of "affective" empathy and tend to have more problems with "cognitive" empathy. However it varies among individuals, as empathy is not a static quality that human beings are born with; it can increase or decrease depending on experiences and what one feeds their brain, for most everyone in the general population.
DeleteStudies have shown that there are specific activities that may increase empathy such as taking care of a child or animal, and other activities like playing violent video games and avoiding face to face interaction that may decrease empathy among some. And there are neuro-chemical/hormonal changes that occur along with behaviors conducive to or not conducive to levels of empathy.
The general public and the overwhelming majority of the entire autism community, numbering in the millions, has not expressed offense that research is being done to potentially help children in the future, and some do share empathy about the more serious associated symptoms of autism and co-morbid conditions, that some do struggle with and even, in part, can result in death in a small minority of cases.
I defend your right to attempt to ban these items for sale, in your concern for your feelings and those that share your feelings, however, I see it evidenced as 0% chance of successful based on the huge response of support for the effort in the broader community of autism; it would be more effective, in my opinion to boycott the items, rather than what seems as a deconstructive effort that would limit rights of the larger majority of the general population and broader autism community that have shown enthusiasm in the awareness, acceptance, and fundraising effort.
It would be nice if everyone could work together and consider the feelings of everyone when approaching an issue like this, before action is taken. But, generally that is not part of human nature, when one is attached to one ideology or another, applicable to most anyone on the spectrum or off the spectrum.
Autism Speaks has been guilty of not pursuing input of how their actions of the past might have affected others, but the same is evident among those that have criticized autism speaks efforts.
The Autism cure ideology has been a part of the fabric of US society ever since the early 60's, initiated by the Autism Society of America, with the puzzle icon, and the end of the refrigerator mother theory, that is credited to that organization's founder, who also started the first research organization to search for a cure for autism.
The Autism Society still provides information on FDA approved chelation methods of treating heavy metal poisoning on their website that the associated Autism Research Institute supports along with the Defeat Autism Now DAN philosophy of treating autism. However they are not telling anyone on their website to pursue that avenue without appropriate medical consultation.
An issue I see is Autism Speaks does not meet a standard significantly lower than any of these other organizations that support a cure ideology, however they are continually attacked by the ASAN organization for supporting a cure ideology, in the larger public arena, while the Autism Society supporting cure ideology is endorsed by the ASAN organization. And additionally, the Autism Society does not meet or exceed some of the standards that autism speaks is admonished for on the fact sheet on the ASAN website.
R/Kate
.
This is an encouraging effort quoted and linked below to move forward to bridge some of these barriers of communication and understanding for a more cooperative effort spanning the broad autism community. :)
ReplyDeletehttp://www.disabilityscoop.com/2012/08/07/autism-end-to-infighting/16186/
"The Autism Society wants to bring together all of the major autism organizations to establish a series of joint goals.
“The infighting that a lot of times characterizes the autism community needs to stop,” said Scott Badesch, president of the Autism Society. “Until we come together, we’re not going to be able to move the needle on enhancing autism services.”
Tension has been brewing for years with parents and even professionals at odds over everything from possible causes of the developmental disorder to whether precious dollars should be spent on research or services for those on the spectrum.
As a result, Badesch said he sees many other interest groups getting a stronger reception locally and in Congress, citing elderly Americans and the gay and lesbian community as examples. By working together with a united front, Badesch said he hopes autism advocates can be more productive.
The Autism Society is calling for leaders of national organizations to come together in the same way that many companies, for example, work together through industry trade groups. While each organization would retain its own agenda and perspective, the community could work collectively to achieve specific objectives.
Badesch’s group is reaching out to other stakeholders at present to gauge interest. He said the initial response has been positive but declined to offer specifics."