What do you think of Autism Speaks?
26 Sep 2016, 3:22 pm
ASPartOfMe wrote:
They are not as pure evil as they were in the 2000's when they talked only in terms of childhood severe autism, used exclusively fear rhetoric, had a video with an mother of an autistic child talking about thoughts of killing him in front him. While they withdrew that and other hateful videos and use more balanced rhetoric these days they have never apologized for those videos.
They still as of 2014 used only 4% of thier money for supports.
They vigorously support Applied Behavioral Analysis. That is a involved topic we have had many threads about.
They still openly boast about #MSSNG collaboration with Google and still use puzzle piece as thier rhetoric. I find it highly offensive to have it implied that I am missing or a puzzle piece. Potententially more important then offensive rhetoric is that the #MSSNG project is to create an autism genetic database. That has the potential to be used for eugenic elimination of autistic people. The Judge Rotenberg Center still uses electric shocks on Autistic people. Autism Speaks says they oppose that yet they allowed The Judge Rotenberg Center have have a booth at thier fair in 2015.
There is plausable reason to think the organization is not the evil entity it once was. Within the last year and a half one of the founding members has resigned his CEO position the other has died and they have added two autistic members to thier board. The rhetoric is noticibly better or not as bad as it once was. But based on thier history and the fact we have little idea where the money is going, suspicion the improved rhetoric and the appointments are a smokescreen to cover a dangourous agenda is reasonable.
You say they use fear-mongering well to a certain level aren't they using that to convey the level of threat autism poses to someone living successfully in the everyday world.They still as of 2014 used only 4% of thier money for supports.
They vigorously support Applied Behavioral Analysis. That is a involved topic we have had many threads about.
They still openly boast about #MSSNG collaboration with Google and still use puzzle piece as thier rhetoric. I find it highly offensive to have it implied that I am missing or a puzzle piece. Potententially more important then offensive rhetoric is that the #MSSNG project is to create an autism genetic database. That has the potential to be used for eugenic elimination of autistic people. The Judge Rotenberg Center still uses electric shocks on Autistic people. Autism Speaks says they oppose that yet they allowed The Judge Rotenberg Center have have a booth at thier fair in 2015.
There is plausable reason to think the organization is not the evil entity it once was. Within the last year and a half one of the founding members has resigned his CEO position the other has died and they have added two autistic members to thier board. The rhetoric is noticibly better or not as bad as it once was. But based on thier history and the fact we have little idea where the money is going, suspicion the improved rhetoric and the appointments are a smokescreen to cover a dangourous agenda is reasonable.
As for Autism Speaks budget their is a number of things to think about, the vast majority of autism therapies available are ones that in many ways exclusively benefit those who possess high functioning autism or Asperger's. By comparison we don't support low functioning autistic people enough so pouring money into research and cure might be effective.
As for Applied behavioral analysis isn't their a reason for trying it out as one of the ways in which autistic people may develop into the world around them. Though I do have to admit their are questionable ethics behind it.
ASPartOfMe
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27 Sep 2016, 2:03 am
Their fear mongering is used to gain empathy/sympathy for the parents of autistic children for the purpose of fund raising. This had the effect of making Autistics a tragedy and propagating a sense of great fear amoung Autism parents.
Since so called low functioning Autistics until relatively recently were the only autistics reconized the therapies developed were developed with them in mind and used for the most part on them. By emphasing only the most impaired autistics and bieng so influential Autism Speaks slowed general recognition of any Autistics who are not the most impaired and slowed reconition that autistics at all levels of the spectrum can mature and do good things. In addition they have been a factor in slowing research into therapies more approriate for the so called higher end of the spectrum.
As of 2012 only 1 to 2 percent of money spent on research on Autism went for adults. By concentrating on only children Autism Speaks prepatuated this. Now that autistic children of 10 years ago when Autism Speaks started are or are becoming young adults they have to market to thier parents in order to continue to fund raise
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
29 Sep 2016, 8:01 am
ASPartOfMe wrote:
Their fear mongering is used to gain empathy/sympathy for the parents of autistic children for the purpose of fund raising. This had the effect of making Autistics a tragedy and propagating a sense of great fear amoung Autism parents.
Since so called low functioning Autistics until relatively recently were the only autistics reconized the therapies developed were developed with them in mind and used for the most part on them. By emphasing only the most impaired autistics and bieng so influential Autism Speaks slowed general recognition of any Autistics who are not the most impaired and slowed reconition that autistics at all levels of the spectrum can mature and do good things. In addition they have been a factor in slowing research into therapies more approriate for the so called higher end of the spectrum.
As of 2012 only 1 to 2 percent of money spent on research on Autism went for adults. By concentrating on only children Autism Speaks prepatuated this. Now that autistic children of 10 years ago when Autism Speaks started are or are becoming young adults they have to market to thier parents in order to continue to fund raise
Since so called low functioning Autistics until relatively recently were the only autistics reconized the therapies developed were developed with them in mind and used for the most part on them. By emphasing only the most impaired autistics and bieng so influential Autism Speaks slowed general recognition of any Autistics who are not the most impaired and slowed reconition that autistics at all levels of the spectrum can mature and do good things. In addition they have been a factor in slowing research into therapies more approriate for the so called higher end of the spectrum.
As of 2012 only 1 to 2 percent of money spent on research on Autism went for adults. By concentrating on only children Autism Speaks prepatuated this. Now that autistic children of 10 years ago when Autism Speaks started are or are becoming young adults they have to market to thier parents in order to continue to fund raise
I think you are forgetting that to many parents of autistic children what their child has is arguably tragedy for them and is something they need all the help in trying to manage, you call that fear mongering but on the perspective of autism speaks what they are doing is just promoting how many parents see autism. I have Asperger’s and not Low or High Functioning Autism and to be honest I do not know what life would be like on the other end of the spectrum since after all I do not have epilepsy, major sensory issues nor are non-verbal but what I do not understand is why people like you and me should feel entitled to speak up against an organization that is advocating for people with Low Functioning to low range High Functioning Autistic people. I mean really can’t we accept that our voice does not necessarily matter since we on the most part have not experienced these issues first-hand!
Autism Speaks accepts that it does not have the right to interfere in our lives since after all it accepts that any cure for High Functioning Autism to Asperger’s must be done via choice. But can’t we show the same courtesy back and accept that the main priority of autism Speaks is to help Low Functioning people and move on with on with our lives.
I am not supportive of all the rhetoric used by autism speaks certainly not that used in the 2000s when even High Functioning Autism and Asperger’s were seen as a death sentence but you have just got to remember our understanding of autism has changed greatly even since then. We recognize that people with High Functioning Autism and Asperger’s as being far more capable than they were seen in the past. We can’t just simply say that autism speaks is evil for the misguided belief that was commonplace in all society. Remember in 2006 Congress passed the Combatting Autism Act what are you next going to say that the US congress was hijacked by a bunch of ableists? No this was the opinion of the time.
Let’s look at the therapies, and ask yourself what are the most common therapies for autism? The answers will likely pop up Speech Therapy, Behavioural Analysis, Communication therapy, Social Skills training etc. The thing they largely all have in common is that they go on to benefit those with High Functioning Autism or Asperger’s whilst people with Low Functioning Autism may find themselves left behind. Now that is something Autism Speaks is working to change since with its research if Autism Speaks did on the contrary fund therapies the people benefiting would be those better off rather than those hit the hardest.
Funding Autistic Adults is actually really hard especially in the United States. No nationwide Autism prevalence study has taken place so the reason why they may get less support is that they do not know how many Autistic people there are roughly in this country so sending aid to a large number of autistic adults is made very hard.
ASPartOfMe
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29 Sep 2016, 11:04 am
These therapies are used for most people on the spectrum. How "effective" they are is another discussion. What would we describe as severe?. Throwing poo, multiple violent meltdowns, non verbal? I just described childhood Temple Grandin and John Elder Robison. In at least Temple Grandin's case her mom did not listen to all the experts who said it was hopeless and worked with her strengths.
Autism Speaks was not the first to not understand that Autism is not just a severe childhood disease with a hopeless prognosis. That started back with Leo Kanner. By 2005 when Autism Speaks started the original idea was outdated. Because Autism Speaks became influential, because when the media wanted to do a story about Autism the went to Autism Speaks they perpetuated the old idea. If a parent thinks their child is a tragedy, that the only hope is a cure that is going to negatively effect their decision making and how they act around the child no matter how hard the parents try to not let their feelings show. Everybody autistic is not going to be remotely like Temple Grandin, that is not the point I am trying to make which is the a lot of Autistic children did not and do not advance towered their potential whatever that may be because Autism Speaks set the hopeless, tragedy agenda.
There are little services and lack of understanding in due to lack prevalence studies here. The lack of studies was in part caused by Autism Speaks setting the agenda. In the UK where people like Lorna Wing not Autism Speaks set the agenda it is somewhat different. A prevalence study was done in 2011 and it found similar prevalence rates for adults and children. Thier leading charity is the National Autistic Society. Getting older. The different attitude also shows here https://www.national.slam.nhs.uk/services/adult-services/adultautism/
While it questionable if they are really better these days, for this part of my post I am going on the assumption that they are. Their improvements do not undue the considerable fear and lowered to no expectations they caused amoung autism parents and the negative effects it caused for thier children, it does not undue the damage of so many "higher functioning" people not bieng recognized and whatever role they had in perpetuating the continuing idea that "mild" autistics are not real autistics but spoiled brats hurting the "real autistics". While bieng hopefull they are improving it is not unreasonable for me to be still angry at them, especially since they have never apologized.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
29 Sep 2016, 8:34 pm
ASPartOfMe wrote:
These therapies are used for most people on the spectrum. How "effective" they are is another discussion. What would we describe as severe?. Throwing poo, multiple violent meltdowns, non verbal? I just described childhood Temple Grandin and John Elder Robison. In at least Temple Grandin's case her mom did not listen to all the experts who said it was hopeless and worked with her strengths.
You have got to remember that Autism Speaks is quite different from the physiologist who said that Temple Grandin should be institutionalized. If someone was diagnosed with Autism in 2005 what Autism Speaks would do is recommend therapies. If someone was diagnosed with autism in the 1950s the message would have been to put that someone in an asylum. Already we can see that the messages are very much different. We also must remember that Autism Speaks has done much good, the Combating Autism Act in 2006 for instance, what that did was allow for early screening to take place meaning that Autistic children can get the help that they need early on. Essentially Autism Speaks through all its work was able to get a bill passed at a federal level.
I am not condoning all that Autism Speaks has done with its rhetoric but there is a point in which we have to move on. Autism Speaks now respects the human rights that Autistic Individuals. A cure for autism and research is not an attempt to offend people with the condition like you and me but ultimately in goal is to help people get relief from a condition that prevents them from having a good life.
The thing is about John Elder Robison, Temple Grandin, Jim Sinclair and Ari Ne’eman is that they all have progressed to a point whereby many of them have gone married and lived independently that is so much more than what you can see for someone with low functioning autism whereby you may well be left in the dirt.
ASPartOfMe wrote:
Autism Speaks was not the first to not understand that Autism is not just a severe childhood disease with a hopeless prognosis. That started back with Leo Kanner. By 2005 when Autism Speaks started the original idea was outdated. Because Autism Speaks became influential, because when the media wanted to do a story about Autism the went to Autism Speaks they perpetuated the old idea. If a parent thinks their child is a tragedy, that the only hope is a cure that is going to negatively effect their decision making and how they act around the child no matter how hard the parents try to not let their feelings show. Everybody autistic is not going to be remotely like Temple Grandin, that is not the point I am trying to make which is the a lot of Autistic children did not and do not advance towered their potential whatever that may be because Autism Speaks set the hopeless, tragedy agenda.
The tragedy Agenda is not something that Autism Speaks always lives by today where they have acknowledge that it is simply too big a label to place all across the spectrum. At a private school I went to I knew a girl with High Functioning Autism. She was 14 but had been placed down in a year two years below her. Shen was intelligent and knew much about zoology and world issues but the thing is she could not handle the pressure of being in a class or could articulate herself at all in real words as a result people simply dismissed her as being ret*d calling her that behind her back recently she even admitted to being depressed. When I think about myself with Asperger’s and then about her with High Functioning Autism I can’t help but feel that what she has is a barrier to her communication. The way we help people with Low to High Functioning Autism is not by slamming the Autism Speaks but letting the organization develop practical solutions that could work. When society see someone with Leprosy you don’t simply tell the person we accept you as human and leave it at that we recognise the person for the illness they have and aim to help them. ASPartOfMe wrote:
There are little services and lack of understanding in due to lack prevalence studies here. The lack of studies was in part caused by Autism Speaks setting the agenda. In the UK where people like Lorna Wing not Autism Speaks set the agenda it is somewhat different. A prevalence study was done in 2011 and it found similar prevalence rates for adults and children. Thier leading charity is the National Autistic Society. Getting older. The different attitude also shows here https://www.national.slam.nhs.uk/services/adult-services/adultautism/
While it questionable if they are really better these days, for this part of my post I am going on the assumption that they are. Their improvements do not undue the considerable fear and lowered to no expectations they caused amoung autism parents and the negative effects it caused for thier children, it does not undue the damage of so many "higher functioning" people not bieng recognized and whatever role they had in perpetuating the continuing idea that "mild" autistics are not real autistics but spoiled brats hurting the "real autistics". While bieng hopefull they are improving it is not unreasonable for me to be still angry at them, especially since they have never apologized.
I feel I do understand what you are saying in this part but it is also worth recognizing that Autism Speaks has in recent times favoured a more progressive agenda. While it questionable if they are really better these days, for this part of my post I am going on the assumption that they are. Their improvements do not undue the considerable fear and lowered to no expectations they caused amoung autism parents and the negative effects it caused for thier children, it does not undue the damage of so many "higher functioning" people not bieng recognized and whatever role they had in perpetuating the continuing idea that "mild" autistics are not real autistics but spoiled brats hurting the "real autistics". While bieng hopefull they are improving it is not unreasonable for me to be still angry at them, especially since they have never apologized.
For instance in 2015 Hillary Clinton released her Autism plan which would include the first Autism Prevalence study in the United States being undertaken, shortly afterwards the board for Autism Speaks spoke out in favour of this.
29 Sep 2016, 10:49 pm
I came across this today:
http://america.aljazeera.com/opinions/2 ... utism.html
Not sure if AJ has actually broadcast anything about A$. The above seems to be an opinion, though it may be an opinion based on something they previously broadcasted. Interesting, in any case.
ASPartOfMe
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30 Sep 2016, 2:14 am
Shahunshah wrote:
ASPartOfMe wrote:
These therapies are used for most people on the spectrum. How "effective" they are is another discussion. What would we describe as severe?. Throwing poo, multiple violent meltdowns, non verbal? I just described childhood Temple Grandin and John Elder Robison. In at least Temple Grandin's case her mom did not listen to all the experts who said it was hopeless and worked with her strengths.
You have got to remember that Autism Speaks is quite different from the physiologist who said that Temple Grandin should be institutionalized. If someone was diagnosed with Autism in 2005 what Autism Speaks would do is recommend therapies. If someone was diagnosed with autism in the 1950s the message would have been to put that someone in an asylum. Already we can see that the messages are very much different. We also must remember that Autism Speaks has done much good, the Combating Autism Act in 2006 for instance, what that did was allow for early screening to take place meaning that Autistic children can get the help that they need early on. Essentially Autism Speaks through all its work was able to get a bill passed at a federal level.
I am not condoning all that Autism Speaks has done with its rhetoric but there is a point in which we have to move on. Autism Speaks now respects the human rights that Autistic Individuals. A cure for autism and research is not an attempt to offend people with the condition like you and me but ultimately in goal is to help people get relief from a condition that prevents them from having a good life.
The thing is about John Elder Robison, Temple Grandin, Jim Sinclair and Ari Ne’eman is that they all have progressed to a point whereby many of them have gone married and lived independently that is so much more than what you can see for someone with low functioning autism whereby you may well be left in the dirt.
ASPartOfMe wrote:
Autism Speaks was not the first to not understand that Autism is not just a severe childhood disease with a hopeless prognosis. That started back with Leo Kanner. By 2005 when Autism Speaks started the original idea was outdated. Because Autism Speaks became influential, because when the media wanted to do a story about Autism the went to Autism Speaks they perpetuated the old idea. If a parent thinks their child is a tragedy, that the only hope is a cure that is going to negatively effect their decision making and how they act around the child no matter how hard the parents try to not let their feelings show. Everybody autistic is not going to be remotely like Temple Grandin, that is not the point I am trying to make which is the a lot of Autistic children did not and do not advance towered their potential whatever that may be because Autism Speaks set the hopeless, tragedy agenda.
The tragedy Agenda is not something that Autism Speaks always lives by today where they have acknowledge that it is simply too big a label to place all across the spectrum. At a private school I went to I knew a girl with High Functioning Autism. She was 14 but had been placed down in a year two years below her. Shen was intelligent and knew much about zoology and world issues but the thing is she could not handle the pressure of being in a class or could articulate herself at all in real words as a result people simply dismissed her as being ret*d calling her that behind her back recently she even admitted to being depressed. When I think about myself with Asperger’s and then about her with High Functioning Autism I can’t help but feel that what she has is a barrier to her communication. The way we help people with Low to High Functioning Autism is not by slamming the Autism Speaks but letting the organization develop practical solutions that could work. When society see someone with Leprosy you don’t simply tell the person we accept you as human and leave it at that we recognise the person for the illness they have and aim to help them. ASPartOfMe wrote:
There are little services and lack of understanding in due to lack prevalence studies here. The lack of studies was in part caused by Autism Speaks setting the agenda. In the UK where people like Lorna Wing not Autism Speaks set the agenda it is somewhat different. A prevalence study was done in 2011 and it found similar prevalence rates for adults and children. Thier leading charity is the National Autistic Society. Getting older. The different attitude also shows here https://www.national.slam.nhs.uk/services/adult-services/adultautism/
While it questionable if they are really better these days, for this part of my post I am going on the assumption that they are. Their improvements do not undue the considerable fear and lowered to no expectations they caused amoung autism parents and the negative effects it caused for thier children, it does not undue the damage of so many "higher functioning" people not bieng recognized and whatever role they had in perpetuating the continuing idea that "mild" autistics are not real autistics but spoiled brats hurting the "real autistics". While bieng hopefull they are improving it is not unreasonable for me to be still angry at them, especially since they have never apologized.
I feel I do understand what you are saying in this part but it is also worth recognizing that Autism Speaks has in recent times favoured a more progressive agenda. While it questionable if they are really better these days, for this part of my post I am going on the assumption that they are. Their improvements do not undue the considerable fear and lowered to no expectations they caused amoung autism parents and the negative effects it caused for thier children, it does not undue the damage of so many "higher functioning" people not bieng recognized and whatever role they had in perpetuating the continuing idea that "mild" autistics are not real autistics but spoiled brats hurting the "real autistics". While bieng hopefull they are improving it is not unreasonable for me to be still angry at them, especially since they have never apologized.
For instance in 2015 Hillary Clinton released her Autism plan which would include the first Autism Prevalence study in the United States being undertaken, shortly afterwards the board for Autism Speaks spoke out in favour of this.
If there were a lot of asylums around in 2005 I am sure they would have recommended it. Like I wrote just last year at thier job fair they allowed the only institution in America that still uses electric shocks to have a booth. Thier rhetoric is better but thier action said something different.
Helped by Autism Speaks lobbying ABA has become the "gold standard". ABA supporters yell "evidence based, evidence based" but they ignore the evidence that in most cases the "benifits" end if you stop it, and ease if you ease therapy. To get the full benefits it is recommended 25-40 hours a week. The evidence shows ABA is a very expensive band aid at best. Even if I am wrong about ABA, subjecting little kids to 25 to 40 hours a week of anything is a horrible thing to do. Because ABA is the "gold standard" treatment getting funding to research other treatments that may have positive long lasting effects is difficult.
You and thier supporters talk about the wonderful help and supports they give. I would be a lot more convinced if for 2016 they spent a LOT more then the 4% they spent in 2014.
You talk about letting them find practical solutions. Thing is we do not really know besides a few press releases know what they are doing.
You want me to acknowledge the improvements and move on and forget about the past. I am one of the few Autism Speaks critics that has acknowledged that. But smokescreen or real change you have to understand the reasons for at least the rhetoric changing. A boycott was organized against thier sponsors. Build a Bear and Penara Bread withdraw support. Neurotribes was published became popular and thier near monopoly on defining the issue ended, and then the changes started to happen. Now that progress is bring made is not the time to quit. Hopefully someday it will be time, but trust has to be earned.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
30 Sep 2016, 5:10 am
ASPartOfMe wrote:
Shahunshah wrote:
ASPartOfMe wrote:
These therapies are used for most people on the spectrum. How "effective" they are is another discussion. What would we describe as severe?. Throwing poo, multiple violent meltdowns, non verbal? I just described childhood Temple Grandin and John Elder Robison. In at least Temple Grandin's case her mom did not listen to all the experts who said it was hopeless and worked with her strengths.
You have got to remember that Autism Speaks is quite different from the physiologist who said that Temple Grandin should be institutionalized. If someone was diagnosed with Autism in 2005 what Autism Speaks would do is recommend therapies. If someone was diagnosed with autism in the 1950s the message would have been to put that someone in an asylum. Already we can see that the messages are very much different. We also must remember that Autism Speaks has done much good, the Combating Autism Act in 2006 for instance, what that did was allow for early screening to take place meaning that Autistic children can get the help that they need early on. Essentially Autism Speaks through all its work was able to get a bill passed at a federal level.
I am not condoning all that Autism Speaks has done with its rhetoric but there is a point in which we have to move on. Autism Speaks now respects the human rights that Autistic Individuals. A cure for autism and research is not an attempt to offend people with the condition like you and me but ultimately in goal is to help people get relief from a condition that prevents them from having a good life.
The thing is about John Elder Robison, Temple Grandin, Jim Sinclair and Ari Ne’eman is that they all have progressed to a point whereby many of them have gone married and lived independently that is so much more than what you can see for someone with low functioning autism whereby you may well be left in the dirt.
ASPartOfMe wrote:
Autism Speaks was not the first to not understand that Autism is not just a severe childhood disease with a hopeless prognosis. That started back with Leo Kanner. By 2005 when Autism Speaks started the original idea was outdated. Because Autism Speaks became influential, because when the media wanted to do a story about Autism the went to Autism Speaks they perpetuated the old idea. If a parent thinks their child is a tragedy, that the only hope is a cure that is going to negatively effect their decision making and how they act around the child no matter how hard the parents try to not let their feelings show. Everybody autistic is not going to be remotely like Temple Grandin, that is not the point I am trying to make which is the a lot of Autistic children did not and do not advance towered their potential whatever that may be because Autism Speaks set the hopeless, tragedy agenda.
The tragedy Agenda is not something that Autism Speaks always lives by today where they have acknowledge that it is simply too big a label to place all across the spectrum. At a private school I went to I knew a girl with High Functioning Autism. She was 14 but had been placed down in a year two years below her. Shen was intelligent and knew much about zoology and world issues but the thing is she could not handle the pressure of being in a class or could articulate herself at all in real words as a result people simply dismissed her as being ret*d calling her that behind her back recently she even admitted to being depressed. When I think about myself with Asperger’s and then about her with High Functioning Autism I can’t help but feel that what she has is a barrier to her communication. The way we help people with Low to High Functioning Autism is not by slamming the Autism Speaks but letting the organization develop practical solutions that could work. When society see someone with Leprosy you don’t simply tell the person we accept you as human and leave it at that we recognise the person for the illness they have and aim to help them. ASPartOfMe wrote:
There are little services and lack of understanding in due to lack prevalence studies here. The lack of studies was in part caused by Autism Speaks setting the agenda. In the UK where people like Lorna Wing not Autism Speaks set the agenda it is somewhat different. A prevalence study was done in 2011 and it found similar prevalence rates for adults and children. Thier leading charity is the National Autistic Society. Getting older. The different attitude also shows here https://www.national.slam.nhs.uk/services/adult-services/adultautism/
While it questionable if they are really better these days, for this part of my post I am going on the assumption that they are. Their improvements do not undue the considerable fear and lowered to no expectations they caused amoung autism parents and the negative effects it caused for thier children, it does not undue the damage of so many "higher functioning" people not bieng recognized and whatever role they had in perpetuating the continuing idea that "mild" autistics are not real autistics but spoiled brats hurting the "real autistics". While bieng hopefull they are improving it is not unreasonable for me to be still angry at them, especially since they have never apologized.
I feel I do understand what you are saying in this part but it is also worth recognizing that Autism Speaks has in recent times favoured a more progressive agenda. While it questionable if they are really better these days, for this part of my post I am going on the assumption that they are. Their improvements do not undue the considerable fear and lowered to no expectations they caused amoung autism parents and the negative effects it caused for thier children, it does not undue the damage of so many "higher functioning" people not bieng recognized and whatever role they had in perpetuating the continuing idea that "mild" autistics are not real autistics but spoiled brats hurting the "real autistics". While bieng hopefull they are improving it is not unreasonable for me to be still angry at them, especially since they have never apologized.
For instance in 2015 Hillary Clinton released her Autism plan which would include the first Autism Prevalence study in the United States being undertaken, shortly afterwards the board for Autism Speaks spoke out in favour of this.
If there were a lot of asylums around in 2005 I am sure they would have recommended it. Like I wrote just last year at thier job fair they allowed the only institution in America that still uses electric shocks to have a booth. Thier rhetoric is better but thier action said something different.
Helped by Autism Speaks lobbying ABA has become the "gold standard". ABA supporters yell "evidence based, evidence based" but they ignore the evidence that in most cases the "benifits" end if you stop it, and ease if you ease therapy. To get the full benefits it is recommended 25-40 hours a week. The evidence shows ABA is a very expensive band aid at best. Even if I am wrong about ABA, subjecting little kids to 25 to 40 hours a week of anything is a horrible thing to do. Because ABA is the "gold standard" treatment getting funding to research other treatments that may have positive long lasting effects is difficult.
You and thier supporters talk about the wonderful help and supports they give. I would be a lot more convinced if for 2016 they spent a LOT more then the 4% they spent in 2014.
You talk about letting them find practical solutions. Thing is we do not really know besides a few press releases know what they are doing.
You want me to acknowledge the improvements and move on and forget about the past. I am one of the few Autism Speaks critics that has acknowledged that. But smokescreen or real change you have to understand the reasons for at least the rhetoric changing. A boycott was organized against thier sponsors. Build a Bear and Penara Bread withdraw support. Neurotribes was published became popular and thier near monopoly on defining the issue ended, and then the changes started to happen. Now that progress is bring made is not the time to quit. Hopefully someday it will be time, but trust has to be earned.
Maybe it would be a good not to be too presumptuous over what Autism Speaks would have done even in 2005. Even back then their was stigma against the idea of sending off ill or handicapped people towards mental institutions. It is possible Autism Speaks would have rejected the idea of it.
Ultimately ABA therapy is something that needs to be looked into and there been numerous studies often contradicting one another one its effectiveness. However I do know that it is often viewed as the most effective therapy for Low functioning Autism. As well as that a score of people some here on Wrong Planet have endorsed it.
The goal of Autism Speaks in many ways has been to increase awareness for the trials people face living with that condition. Without a substantial amount of awareness there is no change as there was in the decades preceding the 80s. However due to the actions of awareness organizations like Autism Speaks people can be said to be allot more informed as a result. And arguably Autism Speaks has created change it has just been indirect, such as for instance the launching of the first disease specific bill in years “The Combating Autism Act” out of the US congress. Awareness groups like Autism Speaks can be said to have been helpful in this instance by the amount of awareness they create. Rather than simply saying Autism Speaks doesn’t care about us it is more likely that the organization simply considers it better investment to promote awareness and do research rather than send direct aid. And who knows maybe that is the better strategy?
Also let’s say you’re right in your assertion and that ABA is bad therapy. I would warn you that if Autism Speaks sends out more of its budget to directly help autistic families it would only increase the rate in which inefficient therapies like this are used. If on the other hand Autism Speaks does research that it can work towards finding better treatments for those affected by the condition.
From all of autism speaks reports we can infer that the largest part of the budget for Autism Speaks does go to the awareness programs and research I speak of.
I have read Neurotribes awhile back and I found it to be very interesting particularly how it talked in depth about the history of the Eugenics movement. However over the months I looked into movements like neurodiversity and I think that by calling Autism a difference and not a disability it creates an umbrella that causes the opposite of what Autism speaks has done essentially we see Autism as being seen as allot less severe and damaging than what it really is.
ASPartOfMe
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30 Sep 2016, 1:07 pm
The eugenics era in America you read about in Neurotribes combined with their past rhetoric is what makes me weary of genetic reasearch. I am not one of these it can't happen here or happen here again people.
Autism is impairments but dispite the angst this notion causes is a lot about differences also. Eye contact is considered rude in some cultures. Americas extroverted culture hurts autistics. You read in Neurotribes about the ham radio culture of the 1950's where people with autistic traits found ways to communicate with each other. There were a lot of bad things about growing up unreconized back in the 60's and 70's then but the advantage of bieng thought of as "different" (and a lot worse) and not autistic is that I and everybody else had no notion I needed to be cured or what I could not do.
There will be bad errors but putting the vast majority most of effort into research instread of treatments is not done for most other conditions for good reasons. We did not say wait for a cure before creating glasses and hearing aides to help people. A lot of money goes into cancer research goes into finding causes but a lot of effort has gone into treatments as imperfect as they are. People with terminal cancer can certainly be thought of as expensive burdens but yet with pain management and pallative care we have made the last stages of thier lives much better.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
30 Sep 2016, 8:25 pm
ASPartOfMe wrote:
The eugenics era in America you read about in Neurotribes combined with their past rhetoric is what makes me weary of genetic reasearch. I am not one of these it can't happen here or happen here again people.
Autism Speaks is not saying that you are imperfect or need a cure, what are you afraid of? Maybe we shouldn’t prescribe the label of eugenics towards Autism Speaks because the way I see it the organization could be trying to help those less fortunate than ourselves.
ASPartOfMe wrote:
Autism is impairments but dispite the angst this notion causes is a lot about differences also. Eye contact is considered rude in some cultures. Americas extroverted culture hurts autistics. You read in Neurotribes about the ham radio culture of the 1950's where people with autistic traits found ways to communicate with each other. There were a lot of bad things about growing up unreconized back in the 60's and 70's then but the advantage of bieng thought of as "different" (and a lot worse) and not autistic is that I and everybody else had no notion I needed to be cured or what I could not do.
I personally am someone with Asperger’s Syndrome who doesn’t see themselves as impaired and see it as a difference. I think that the way society treats us is something which needs to be addressed however I also do not think it is fair to shift the blame towards Autism Speaks for this. But the traits that make up classic low functioning autism are more than just differences that society is not patient with they are impairments. ASPartOfMe wrote:
There will be bad errors but putting the vast majority most of effort into research instread of treatments is not done for most other conditions for good reasons. We did not say wait for a cure before creating glasses and hearing aides to help people. A lot of money goes into cancer research goes into finding causes but a lot of effort has gone into treatments as imperfect as they are. People with terminal cancer can certainly be thought of as expensive burdens but yet with pain management and pallative care we have made the last stages of thier lives much better.
The way I see it is that this research can be helpful particularly as many Autism treatments are ineffective. If autism Speaks was able to develop drugs that help someone with Low Functioning Autism live their daily life it could be tremendously helpful. Thus there is a good reason why Autism Speaks should send its budget to research therefore.
30 Sep 2016, 8:36 pm
[quote] Autism Speaks is not saying that you are imperfect or need a cure, what are you afraid of? [End Quote]
Have you ever seen the video "I Am Autism" that AS supported until the heat got too hot for them?
........
Autism Speaks amalgamated with Cure Autism Now in 2006 and made a declaration to the effect that union was because they had the same central goal. Given videos Autism Speaks have released in the past, which demonised anyone with autism to absurd levels, given that they have compared autism to leprosy, and so on, I think APOM's view is justified.
30 Sep 2016, 8:41 pm
yelekam wrote:
Well to start off this whole High-functioning-severe- et cetera stuff is based on the program a distorted and outdated medical model. The current medical model judges health based on a standard of normal function. Though normal only means what is the common and standard way of functioning, and says notion about the objective qualities and values of how people actually are. Under the medical standard if most people cut themselves, or had compulsive homicidal urges, or were rapists, than these things would be considered healthy and to not have these traits would be considered an illness and/or defect. The common medical model is based on a flawed standard and does not provide a sensible guide.
This high-function low function stuff is based in a grading of this standard. What high function or low function or severe only says is how different in function a person is judged to be in the relation of average function. It does not discern the status of a person being able to objectively function, or the potential and value within their life.
These distinctions in separating high-function an severe are also based on highly questionable premises. It premises that that there is a linear grading in which some are more autistic than others, that those who are more autistic are the ones worse off and less functional, and that autism would be the reason for this. All of those premises I would contend against. I would contend that the traits of autism are an alternative functionality, and that the degree to which autistic individuals can function in society is owed to a complex mixture of development, individual variation, opportunities, and the social context in which they reside.
Furthermore, this drawing of a distinction of high functioning and severe is both arbitrary and exaggerated. There is now separate classes of high functioning and low functioning. There is autism spectrum in which there are multiple variables of traits. If it were based merely on differences of these variances and would see little reason why the so called "high function" would be any more distant from understanding the so called "severe" than they would for a different kind of so called high functioning one. Furthermore, I would believe there is a line of commonality between autistic people of various sorts, and on at least that point there can be a basis of common understanding. Though I would believe that such understanding can be increased through mutual learning and communication.
These distinctions of high functioning and severe are erroneous. But beyond this, the distinction in treatment I would find objectionable. If you wish for high-functioning autistics to have a choice on a cure, then why shouldn't the severe get that choice too. For all you know they could like to remain autistic. Why not also give a cure option for NT's, so they can choose to become autistic?
Though that's because the choice is not about freedom of choice at all. The Nuerotypical dominated and normative medical dominated position advanced by autism speaks isn't about choice on the part of those whose lives they effect. Its about their order deciding whether other people deserve to exist and what sort of existence they get to have. They have only mitigated complaints against them for public opinion, for promising that they will focus there all out effort of elimination at the more heavily different. In my view, its little more positive than when the Nazis allowed for some of the physically stronger Jews to be slaves in work camps, instead of executing them with the rest.
I would contend rather than following the broken medical model and trying to advance a cure, that the direction be changed to using a sensible theoretical structure to direct education and cultivation toward developing autistic people's capabilities, and to reform the order of society to produce one in which there is a place for autistic people as social equals. Indeed, autistic people who would have spent there lives in a mental institution decades ago, can in today's society be computer programmers, college professors, and numerous other things they were blocked from being in the past. Efforts directed at bettering the lives of autistic people could in the future enable many of those who are today considered severe to lead much more fulfilling lives. But regardless they still have a dignity in the value of their lives which autism speak's approach does not duly respect.
This high-function low function stuff is based in a grading of this standard. What high function or low function or severe only says is how different in function a person is judged to be in the relation of average function. It does not discern the status of a person being able to objectively function, or the potential and value within their life.
These distinctions in separating high-function an severe are also based on highly questionable premises. It premises that that there is a linear grading in which some are more autistic than others, that those who are more autistic are the ones worse off and less functional, and that autism would be the reason for this. All of those premises I would contend against. I would contend that the traits of autism are an alternative functionality, and that the degree to which autistic individuals can function in society is owed to a complex mixture of development, individual variation, opportunities, and the social context in which they reside.
Furthermore, this drawing of a distinction of high functioning and severe is both arbitrary and exaggerated. There is now separate classes of high functioning and low functioning. There is autism spectrum in which there are multiple variables of traits. If it were based merely on differences of these variances and would see little reason why the so called "high function" would be any more distant from understanding the so called "severe" than they would for a different kind of so called high functioning one. Furthermore, I would believe there is a line of commonality between autistic people of various sorts, and on at least that point there can be a basis of common understanding. Though I would believe that such understanding can be increased through mutual learning and communication.
These distinctions of high functioning and severe are erroneous. But beyond this, the distinction in treatment I would find objectionable. If you wish for high-functioning autistics to have a choice on a cure, then why shouldn't the severe get that choice too. For all you know they could like to remain autistic. Why not also give a cure option for NT's, so they can choose to become autistic?
Though that's because the choice is not about freedom of choice at all. The Nuerotypical dominated and normative medical dominated position advanced by autism speaks isn't about choice on the part of those whose lives they effect. Its about their order deciding whether other people deserve to exist and what sort of existence they get to have. They have only mitigated complaints against them for public opinion, for promising that they will focus there all out effort of elimination at the more heavily different. In my view, its little more positive than when the Nazis allowed for some of the physically stronger Jews to be slaves in work camps, instead of executing them with the rest.
I would contend rather than following the broken medical model and trying to advance a cure, that the direction be changed to using a sensible theoretical structure to direct education and cultivation toward developing autistic people's capabilities, and to reform the order of society to produce one in which there is a place for autistic people as social equals. Indeed, autistic people who would have spent there lives in a mental institution decades ago, can in today's society be computer programmers, college professors, and numerous other things they were blocked from being in the past. Efforts directed at bettering the lives of autistic people could in the future enable many of those who are today considered severe to lead much more fulfilling lives. But regardless they still have a dignity in the value of their lives which autism speak's approach does not duly respect.
Well Autism Speaks acknowledges that many of those with High Functioning Autism and Asperger's Syndrome do not seek to be cured. Isn't Autism Speaks therefore respecting the fact that these people including myself may see their condition as being something of a difference rather than a disability?
I would say that when it comes to Autism their can be a certain line in which something becomes not just a difference but a disability. Therefore I actually think it is unfair just to label low functioning autism as a difference as it undermines the way in which many people on that part of the spectrum have a lesser quality of life due to their condition.
30 Sep 2016, 8:45 pm
Shahunshah wrote:
yelekam wrote:
Well to start off this whole High-functioning-severe- et cetera stuff is based on the program a distorted and outdated medical model. The current medical model judges health based on a standard of normal function. Though normal only means what is the common and standard way of functioning, and says notion about the objective qualities and values of how people actually are. Under the medical standard if most people cut themselves, or had compulsive homicidal urges, or were rapists, than these things would be considered healthy and to not have these traits would be considered an illness and/or defect. The common medical model is based on a flawed standard and does not provide a sensible guide.
This high-function low function stuff is based in a grading of this standard. What high function or low function or severe only says is how different in function a person is judged to be in the relation of average function. It does not discern the status of a person being able to objectively function, or the potential and value within their life.
These distinctions in separating high-function an severe are also based on highly questionable premises. It premises that that there is a linear grading in which some are more autistic than others, that those who are more autistic are the ones worse off and less functional, and that autism would be the reason for this. All of those premises I would contend against. I would contend that the traits of autism are an alternative functionality, and that the degree to which autistic individuals can function in society is owed to a complex mixture of development, individual variation, opportunities, and the social context in which they reside.
Furthermore, this drawing of a distinction of high functioning and severe is both arbitrary and exaggerated. There is now separate classes of high functioning and low functioning. There is autism spectrum in which there are multiple variables of traits. If it were based merely on differences of these variances and would see little reason why the so called "high function" would be any more distant from understanding the so called "severe" than they would for a different kind of so called high functioning one. Furthermore, I would believe there is a line of commonality between autistic people of various sorts, and on at least that point there can be a basis of common understanding. Though I would believe that such understanding can be increased through mutual learning and communication.
These distinctions of high functioning and severe are erroneous. But beyond this, the distinction in treatment I would find objectionable. If you wish for high-functioning autistics to have a choice on a cure, then why shouldn't the severe get that choice too. For all you know they could like to remain autistic. Why not also give a cure option for NT's, so they can choose to become autistic?
Though that's because the choice is not about freedom of choice at all. The Nuerotypical dominated and normative medical dominated position advanced by autism speaks isn't about choice on the part of those whose lives they effect. Its about their order deciding whether other people deserve to exist and what sort of existence they get to have. They have only mitigated complaints against them for public opinion, for promising that they will focus there all out effort of elimination at the more heavily different. In my view, its little more positive than when the Nazis allowed for some of the physically stronger Jews to be slaves in work camps, instead of executing them with the rest.
I would contend rather than following the broken medical model and trying to advance a cure, that the direction be changed to using a sensible theoretical structure to direct education and cultivation toward developing autistic people's capabilities, and to reform the order of society to produce one in which there is a place for autistic people as social equals. Indeed, autistic people who would have spent there lives in a mental institution decades ago, can in today's society be computer programmers, college professors, and numerous other things they were blocked from being in the past. Efforts directed at bettering the lives of autistic people could in the future enable many of those who are today considered severe to lead much more fulfilling lives. But regardless they still have a dignity in the value of their lives which autism speak's approach does not duly respect.
This high-function low function stuff is based in a grading of this standard. What high function or low function or severe only says is how different in function a person is judged to be in the relation of average function. It does not discern the status of a person being able to objectively function, or the potential and value within their life.
These distinctions in separating high-function an severe are also based on highly questionable premises. It premises that that there is a linear grading in which some are more autistic than others, that those who are more autistic are the ones worse off and less functional, and that autism would be the reason for this. All of those premises I would contend against. I would contend that the traits of autism are an alternative functionality, and that the degree to which autistic individuals can function in society is owed to a complex mixture of development, individual variation, opportunities, and the social context in which they reside.
Furthermore, this drawing of a distinction of high functioning and severe is both arbitrary and exaggerated. There is now separate classes of high functioning and low functioning. There is autism spectrum in which there are multiple variables of traits. If it were based merely on differences of these variances and would see little reason why the so called "high function" would be any more distant from understanding the so called "severe" than they would for a different kind of so called high functioning one. Furthermore, I would believe there is a line of commonality between autistic people of various sorts, and on at least that point there can be a basis of common understanding. Though I would believe that such understanding can be increased through mutual learning and communication.
These distinctions of high functioning and severe are erroneous. But beyond this, the distinction in treatment I would find objectionable. If you wish for high-functioning autistics to have a choice on a cure, then why shouldn't the severe get that choice too. For all you know they could like to remain autistic. Why not also give a cure option for NT's, so they can choose to become autistic?
Though that's because the choice is not about freedom of choice at all. The Nuerotypical dominated and normative medical dominated position advanced by autism speaks isn't about choice on the part of those whose lives they effect. Its about their order deciding whether other people deserve to exist and what sort of existence they get to have. They have only mitigated complaints against them for public opinion, for promising that they will focus there all out effort of elimination at the more heavily different. In my view, its little more positive than when the Nazis allowed for some of the physically stronger Jews to be slaves in work camps, instead of executing them with the rest.
I would contend rather than following the broken medical model and trying to advance a cure, that the direction be changed to using a sensible theoretical structure to direct education and cultivation toward developing autistic people's capabilities, and to reform the order of society to produce one in which there is a place for autistic people as social equals. Indeed, autistic people who would have spent there lives in a mental institution decades ago, can in today's society be computer programmers, college professors, and numerous other things they were blocked from being in the past. Efforts directed at bettering the lives of autistic people could in the future enable many of those who are today considered severe to lead much more fulfilling lives. But regardless they still have a dignity in the value of their lives which autism speak's approach does not duly respect.
Well Autism Speaks acknowledges that many of those with High Functioning Autism and Asperger's Syndrome do not seek to be cured. Isn't Autism Speaks therefore respecting the fact that these people including myself may see their condition as being something of a difference rather than a disability?
I would say that when it comes to Autism their can be a certain line in which something becomes not just a difference but a disability. Therefore I actually think it is unfair just to label low functioning autism as a difference as it undermines the way in which many people on that part of the spectrum have a lesser quality of life due to their condition.
Read this, see if you still think A$ respects autistic people who see their presence on the spectrum as "something of a difference rather than a disability" http://content.time.com/time/health/art ... 59,00.html
Midnightstar16
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Joined: 13 Apr 2016
Age: 21
Gender: Female
Posts: 4,203
Location: Vaniville Town, Kalos Region
30 Sep 2016, 8:52 pm
B19 wrote:
Quote:
Autism Speaks is not saying that you are imperfect or need a cure, what are you afraid of? [End Quote]
Have you ever seen the video "I Am Autism" that AS supported until the heat got too hot for them?
........
Autism Speaks amalgamated with Cure Autism Now in 2006 and made a declaration to the effect that union was because they had the same central goal. Given videos Autism Speaks have released in the past, which demonised anyone with autism to absurd levels, given that they have compared autism to leprosy, and so on, I think APOM's view is justified.
Have you ever seen the video "I Am Autism" that AS supported until the heat got too hot for them?
........
Autism Speaks amalgamated with Cure Autism Now in 2006 and made a declaration to the effect that union was because they had the same central goal. Given videos Autism Speaks have released in the past, which demonised anyone with autism to absurd levels, given that they have compared autism to leprosy, and so on, I think APOM's view is justified.
Well in my previous posts I have mentioned that Autism Speaks in the present has come to the understanding that the idea of a cure for someone with High Functioning Autism or Asperger's may not be in their interests. I certainly think that Autism Speaks through all its past rhetoric has alienated people on the spectrum. But I also think that we as people with High Functioning Autism and Asperger's need to comprehend how difficult life is on the other end of the spectrum. And ultimately understand why Autism Speaks is doing the actions its doing rather than handing relentless criticism.
You think a mere comparison to leprosy is bad well you can say that once you have lived a life where you can't speak, live independently and suffer crippling sensory issues.
Last edited by Shahunshah on 30 Sep 2016, 9:07 pm, edited 2 times in total.
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