Which one do you find more offensive?
-9
Raven
Joined: 10 May 2008
Age: 34
Gender: Male
Posts: 118
Location: Lafayette, Indiana, United States
08 Jul 2012, 11:01 pm
The third point Feralucce made was about how AS state's in their mission statement that they want to "cure" autism. Many of us on the spectrum don't want that, in fact in one of Temple Grandin's books she says that "if the genetic factors that cause autism were eliminated from the human race, we would pay a terrible price." (Taken from The Way I See It (2011), Pg. 307)
09 Jul 2012, 12:51 am
-9 wrote:
The third point Feralucce made was about how AS state's in their mission statement that they want to "cure" autism. Many of us on the spectrum don't want that, in fact in one of Temple Grandin's books she says that "if the genetic factors that cause autism were eliminated from the human race, we would pay a terrible price." (Taken from The Way I See It (2011), Pg. 307)
A mission statement is a rather brief statement providing an overall vision for an organization, it doesn't provide details.
The details of what the organization means by cure was provided in the wrong planet link of that interview in my last post. The organization isn't trying to eliminate a spectrum of individuals it is trying to eliminate suffering associated with a disorder as detailed below from that link and interview; their answer is reflective of you sentiment and others with similar sentiment toward the issue:
Quote:
3. In 2007, Autism Speaks merged with Cure Autism Now. Does finding an autism cure continue to be one of your organizations primary objectives? Do you believe it is legitimately possible to "cure" autism, and if so, what exactly would such a cure entail? What characteristics would be removed from a cured individual and what characteristics would remain?
A: Our organization has four main objectives – to raise awareness of autism, fund research into the causes, better diagnosis and more effective treatments of autism, to advocate for families (for instance – insurance coverage for validated treatments) and to providing resources for families such as the transition toolkit for adolescents who are becoming adults, community grants to expand community services, create housing and much more, as well as information on where to get assistance around the country.
As our mission relates to “cure”, our goal is to reduce suffering associated with autism, in all its forms. Some would call that a cure. Others would call it remediation of disability. For others, it means acceptance and empowerment.
One of the things that is so challenging about autism is the fact that there’s so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life, and they aren’t looking for a cure. They’re interested in being accepted and getting access to services to help them adapt to the world with their special skills. At the other end, there are individuals severely affected who have significant medical conditions, like GI distress and have never spoken. For those individuals, the prospect of a cure for autism is really important because to that person “cure” means being able to communicate and free of pain. That results in a lot of different perspectives of where our priorities should be.
A: Our organization has four main objectives – to raise awareness of autism, fund research into the causes, better diagnosis and more effective treatments of autism, to advocate for families (for instance – insurance coverage for validated treatments) and to providing resources for families such as the transition toolkit for adolescents who are becoming adults, community grants to expand community services, create housing and much more, as well as information on where to get assistance around the country.
As our mission relates to “cure”, our goal is to reduce suffering associated with autism, in all its forms. Some would call that a cure. Others would call it remediation of disability. For others, it means acceptance and empowerment.
One of the things that is so challenging about autism is the fact that there’s so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life, and they aren’t looking for a cure. They’re interested in being accepted and getting access to services to help them adapt to the world with their special skills. At the other end, there are individuals severely affected who have significant medical conditions, like GI distress and have never spoken. For those individuals, the prospect of a cure for autism is really important because to that person “cure” means being able to communicate and free of pain. That results in a lot of different perspectives of where our priorities should be.
To this point there are well over 1000 genetic associations identified with autism spectrum disorders, most of which have a 1 in 100 association with autism spectrum disorders, also seen in the general population, associated with other conditions. So far if one were to eliminate those genetic factors, one would have to eliminate a large portion of the entire human species well beyond those with autism spectrum disorders.
That's not going to happen within any reasonable standard, the most that any research organization is going to be able to do is zero in on specific sub-groups of autism that do suffer with associated symptoms and co-morbids, and attempt to alleviate that specific suffering through answers that may be found through research, as is described above. Beyond this the most recent research with a huge study of twins, shows that environment is likely as strong a factor as genetics. Environmental factors, through the synergy of modern cultural byproducts, are extremely complex and may never be completely understood, however there is the potential that some specific factor may be found for a subgroup of those that suffer with autism, that may be alleviated of that suffering. It would not be reasonable to abandon this research under any reasonable humane standard.
We do still live in a relatively humane society, per some other cultures in the world. As long as that is the case, this is not going to change. If the US moves toward third world status, most everyone with any disadvantage or disability is going to have much more to worry about than whether or not research is going to lead to the alleviation of someone's suffering.
Now is an excellent time for those both disadvantaged and disabled or potentially disabled or disadvantaged in the future to cheer on the continuance of health care reform as that moves the US further away from third world status. Anyone has the potential to move into disability status at any moment, so there is a bigger battle that has been won there, where there is only evidenced miscommunication on the front of autism speaks, an organization evidenced as carrying on the effort to continue to improve the potential for a reduction of suffering in society, for those disadvantaged and potentially disabled from impairments associated with autism spectrum disorders.
10 Jul 2012, 8:45 am
aghogday wrote:
-9 wrote:
The third point Feralucce made was about how AS state's in their mission statement that they want to "cure" autism. Many of us on the spectrum don't want that, in fact in one of Temple Grandin's books she says that "if the genetic factors that cause autism were eliminated from the human race, we would pay a terrible price." (Taken from The Way I See It (2011), Pg. 307)
A mission statement is a rather brief statement providing an overall vision for an organization, it doesn't provide details.
The details of what the organization means by cure was provided in the wrong planet link of that interview in my last post. The organization isn't trying to eliminate a spectrum of individuals it is trying to eliminate suffering associated with a disorder as detailed below from that link and interview; their answer is reflective of you sentiment and others with similar sentiment toward the issue:
Quote:
3. In 2007, Autism Speaks merged with Cure Autism Now. Does finding an autism cure continue to be one of your organizations primary objectives? Do you believe it is legitimately possible to "cure" autism, and if so, what exactly would such a cure entail? What characteristics would be removed from a cured individual and what characteristics would remain?
A: Our organization has four main objectives – to raise awareness of autism, fund research into the causes, better diagnosis and more effective treatments of autism, to advocate for families (for instance – insurance coverage for validated treatments) and to providing resources for families such as the transition toolkit for adolescents who are becoming adults, community grants to expand community services, create housing and much more, as well as information on where to get assistance around the country.
As our mission relates to “cure”, our goal is to reduce suffering associated with autism, in all its forms. Some would call that a cure. Others would call it remediation of disability. For others, it means acceptance and empowerment.
One of the things that is so challenging about autism is the fact that there’s so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life, and they aren’t looking for a cure. They’re interested in being accepted and getting access to services to help them adapt to the world with their special skills. At the other end, there are individuals severely affected who have significant medical conditions, like GI distress and have never spoken. For those individuals, the prospect of a cure for autism is really important because to that person “cure” means being able to communicate and free of pain. That results in a lot of different perspectives of where our priorities should be.
A: Our organization has four main objectives – to raise awareness of autism, fund research into the causes, better diagnosis and more effective treatments of autism, to advocate for families (for instance – insurance coverage for validated treatments) and to providing resources for families such as the transition toolkit for adolescents who are becoming adults, community grants to expand community services, create housing and much more, as well as information on where to get assistance around the country.
As our mission relates to “cure”, our goal is to reduce suffering associated with autism, in all its forms. Some would call that a cure. Others would call it remediation of disability. For others, it means acceptance and empowerment.
One of the things that is so challenging about autism is the fact that there’s so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life, and they aren’t looking for a cure. They’re interested in being accepted and getting access to services to help them adapt to the world with their special skills. At the other end, there are individuals severely affected who have significant medical conditions, like GI distress and have never spoken. For those individuals, the prospect of a cure for autism is really important because to that person “cure” means being able to communicate and free of pain. That results in a lot of different perspectives of where our priorities should be.
Oh Aghogday, you really crack me up sometimes I LMAO with that one.
So let me see if I've got this straight. When a new parent visits Autism Speaks website looking for help and they see the word cure they are supposed to visit another website, which may or may not be affiliated to it, in order to find out what their somewhat unique interpretation of 'cure' actually is.
I take it there is a clear link to it from their website.
Wouldn't it be easier for them to just stop using that word.
Silly me of course not. Because that would open the litigation floodgates by people who have donated to them on the understanding that they ARE looking for a cure.
That really would make the Autism Speaks fat cats lift their heads out of the trough.
Thanks for the laughs but I really must go now and change my underwear!
CockneyRebel
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Age: 50
Gender: Male
Posts: 117,795
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10 Jul 2012, 4:40 pm
merig wrote:
aghogday wrote:
(excerpt from Autism Speaks Answer to the interview question associated with cure from my last post)
As our mission relates to “cure”, our goal is to reduce suffering associated with autism, in all its forms. Some would call that a cure. Others would call it remediation of disability. For others, it means acceptance and empowerment.
One of the things that is so challenging about autism is the fact that there’s so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life, and they aren’t looking for a cure. They’re interested in being accepted and getting access to services to help them adapt to the world with their special skills. At the other end, there are individuals severely affected who have significant medical conditions, like GI distress and have never spoken. For those individuals, the prospect of a cure for autism is really important because to that person “cure” means being able to communicate and free of pain. That results in a lot of different perspectives of where our priorities should be.
As our mission relates to “cure”, our goal is to reduce suffering associated with autism, in all its forms. Some would call that a cure. Others would call it remediation of disability. For others, it means acceptance and empowerment.
One of the things that is so challenging about autism is the fact that there’s so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life, and they aren’t looking for a cure. They’re interested in being accepted and getting access to services to help them adapt to the world with their special skills. At the other end, there are individuals severely affected who have significant medical conditions, like GI distress and have never spoken. For those individuals, the prospect of a cure for autism is really important because to that person “cure” means being able to communicate and free of pain. That results in a lot of different perspectives of where our priorities should be.
Oh Aghogday, you really crack me up sometimes I LMAO with that one.
So let me see if I've got this straight. When a new parent visits Autism Speaks website looking for help and they see the word cure they are supposed to visit another website, which may or may not be affiliated to it, in order to find out what their somewhat unique interpretation of 'cure' actually is.
I take it there is a clear link to it from their website.
Wouldn't it be easier for them to just stop using that word.
Silly me of course not. Because that would open the litigation floodgates by people who have donated to them on the understanding that they ARE looking for a cure.
That really would make the Autism Speaks fat cats lift their heads out of the trough.
Thanks for the laughs but I really must go now and change my underwear!
No, as evidenced below that is not how it works.
The definition provided by Autism Speaks in that interview was not provided for the parents or other individuals that already support the organization and visit their website.
It was provided for individuals in the autistic community who chose to ask the question directly to the organization. It is still though, a relatively short answer designed for the shorter attention span of those that are not too interested in Autism Speaks Research Mission. However those that actually support the mission are offered extremely detailed information on those research goals, missions, and restrictions in the research section of their website.
The answer has already been provided in their yearly annual report per their accomplished yearly research goals as well as a detailed description of their research mission, goals, and restrictions, for the current year in the research section on their website, for those whom support and visit the autism speaks website, as linked and quoted below.
Details of every research grant proposed and awarded are also available in that section.
There is significant fear expressed and misinformation propagated associated with the word cure among some in the autistic community. It is probably worthwhile quoting a few details below so one will know precisely what the organization means by researching cures for Autism.
And interestingly the Autism Society of America, ASA, another defined "cure" ideology autism organization as defined by Wiki is endorsed by the self-advocacy organization ASAN.
ASA's sister organization the Autism Research Institute ARI recently absorbed the Defeat Autism Now DAN organization that supports chelation as an FDA approved treatment for heavy metal poisoning in individuals with Autism, as well as continued research into the potential that heavy metals such as mercury are associated with autism. This organization is aligned more with alternative potential medical treatments associated with autism, so it's definition of cure is different than Autism Speaks definition, specific to goals and restrictions of research.
Autism Speaks provides clear disclosure on everything they do, but one has to go to the trouble to see what they are doing, to break the myths associated with the organization that have been propagated outside of the official information the organization provides on their website.
http://www.autismspeaks.org/sites/default/files/documents/science-grants/2012_research_emphasis_areas_general__1_17.pdf
Quote:
Autism Speaks 2012 Research Emphasis Areas
Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and
treatment of autism or its disabling symptoms. Our mission is to improve the future for all who
struggle with autism spectrum disorders. In support of that mission we provide funding along
the entire research continuum ‐‐ from discovery to development to dissemination ‐‐ for
innovative projects that hold considerable promise for significantly improving the lives of
persons with autism.
Autism Speaks research funding will be restricted to projects that address one of the following
priorities:
• Understand environmental risk factors and their interaction with genetic susceptibility to
enable prevention and improve diagnosis and treatment
• Discover biomarkers that can improve risk assessment and subtype stratification that will allow
for an individualized approach to treatment
• Improve quality of life through more effective medicines, behavioral interventions, and
technologies
• Enhance diagnosis and treatment of underserved and under‐studied populations, specifically,
o Nonverbal persons with ASD
o Ethnically‐diverse and/or low resource communities
o Adults
o Those with medical co‐morbidities
• Disseminate and implement evidence‐based clinical practices to the broader community
worldwide
Examples of types of projects that would be relevant include, but are not limited to, the following:
Risk factors
• Identification of environmental risk factors for ASD, especially those utilizing novel
approaches or analytic methods.
• Elucidation of gene‐environment interactions relevant to risk for ASD, including animal
models with direct relevance to ASD.
• Investigations into epigenetic mechanisms of gene expression that may be influenced by
environmental exposures.
• Description and/or characterization of genetic and environmental influences on
biological pathways affected in ASD.
• Identification of biomarkers that index increased vulnerability to specific environmental
exposures or classes of exposures.
Early Detection
• Identification of early indices of risk for ASD that can be assessed before 6 months of
postnatal age
• Novel biomarkers that could aid in early detection
• Preclinical markers of early risk for autism
• Development and evaluation of new tools or instruments to be used in early
identification
Adults with ASD
• Longitudinal course of adult development and aging
• Development and testing of novel interventions, supports, and treatment methods
• Elucidation of factors that relate to variation in outcome
• Medical conditions and co‐morbidities associated with adulthood in ASD
• Factors related to increased mortality.
Nonverbal Persons with ASD
• Development of measures to more efficiently identify common comorbid medical and
psychiatric conditions that can contribute to the distress experienced by nonverbal
persons with ASD
• Development of innovative methods or devices that can assist in minimizing pain and
distress experienced by nonverbal persons with ASD when undergoing medical
procedures (e.g. phlebotomy, neuroimaging)
• Development of methods and devices that can facilitate the communicative abilities of
nonverbal persons with ASD
Molecular pathophysiology and translational research
• Elucidation of molecular mechanisms and biochemical pathways, including pathways
focused on synaptic mechanisms, inflammatory processes, metabolism, and
neuropeptides that have relevance for translational research
• Discovery of diagnostic biomarkers of autism, especially ones that can index biological
subtypes
• Development of model systems and bioassays, especially high throughput ones, that can
be used to test novel methods for normalizing pathophysiology
• Proof of concept studies in animal model systems, including identification of small
molecules, peptides, proteins, and/or antibodies that hold potential for modifying core
symptoms of ASD
• Use of induced pluripotent stem cells to advance understanding of abnormalities in
autism, including elucidation of biomarkers, biological mechanisms, environmental
sensitivities, or response to novel compounds
• Animal model studies exploring the impact of treatments on biological endpoints and
the elucidation of surrogate endpoints for treatment studies
Novel treatment approaches and technologies throughout the lifespan
• Development and testing of novel treatments aimed at preventing or modifying core
symptoms of autism, or associated medical conditions throughout the lifespan
• Development and testing of novel treatments of medical conditions associated with
autism, including but not limited to sleep disorders, GI conditions, seizures, metabolic
conditions, and psychiatric co‐morbidities
• Novel treatments for individuals with ASD who are more severely affected, regressed,
and have responded slowly to behavioral/psychosocial treatment approaches, including
individuals with ASD who are nonverbal
• Randomized clinical trials (RCTs) that include biomarkers of therapeutic efficacy or for
tailoring therapy
• RCTs that include biological or surrogate endpoints (e.g., electrophysiological, structural)
• RCTs that combine pharmacological and behavioral interventions to improve efficacy for
improving core or associated symptoms of ASD
• Development and validation of sensitive and specific outcome measures that assess
change in the core features of autism and that can be used in clinical trials
• Novel technologies that provide for the efficient assessment of biomarkers and
physiological indices of treatment response in clinical trials
• Novel technologies that can be used to efficiently track treatment‐related changes in
target symptoms across a variety of naturalistic settings
• Novel technologies that can accelerate the efficacy of other treatment modalities that
impact biological, psychological, educational, occupational and/or social functioning
• Novel technologies that can improve the educational, occupational and social success of
individuals with ASD
Dissemination of empirically‐validated methods
• Development of novel methods that will allow wide access to diagnosis and treatment
services, especially in underserved and low‐resource communities
• Assessment of the effectiveness of feasible, exportable, and scalable screening,
diagnosis, and early intervention programs
• Identification of factors that promote or impede the implementation of empiricallyvalidated
clinical programs in the community
• Training programs that can build capacity of the community to provide interventions
Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and
treatment of autism or its disabling symptoms. Our mission is to improve the future for all who
struggle with autism spectrum disorders. In support of that mission we provide funding along
the entire research continuum ‐‐ from discovery to development to dissemination ‐‐ for
innovative projects that hold considerable promise for significantly improving the lives of
persons with autism.
Autism Speaks research funding will be restricted to projects that address one of the following
priorities:
• Understand environmental risk factors and their interaction with genetic susceptibility to
enable prevention and improve diagnosis and treatment
• Discover biomarkers that can improve risk assessment and subtype stratification that will allow
for an individualized approach to treatment
• Improve quality of life through more effective medicines, behavioral interventions, and
technologies
• Enhance diagnosis and treatment of underserved and under‐studied populations, specifically,
o Nonverbal persons with ASD
o Ethnically‐diverse and/or low resource communities
o Adults
o Those with medical co‐morbidities
• Disseminate and implement evidence‐based clinical practices to the broader community
worldwide
Examples of types of projects that would be relevant include, but are not limited to, the following:
Risk factors
• Identification of environmental risk factors for ASD, especially those utilizing novel
approaches or analytic methods.
• Elucidation of gene‐environment interactions relevant to risk for ASD, including animal
models with direct relevance to ASD.
• Investigations into epigenetic mechanisms of gene expression that may be influenced by
environmental exposures.
• Description and/or characterization of genetic and environmental influences on
biological pathways affected in ASD.
• Identification of biomarkers that index increased vulnerability to specific environmental
exposures or classes of exposures.
Early Detection
• Identification of early indices of risk for ASD that can be assessed before 6 months of
postnatal age
• Novel biomarkers that could aid in early detection
• Preclinical markers of early risk for autism
• Development and evaluation of new tools or instruments to be used in early
identification
Adults with ASD
• Longitudinal course of adult development and aging
• Development and testing of novel interventions, supports, and treatment methods
• Elucidation of factors that relate to variation in outcome
• Medical conditions and co‐morbidities associated with adulthood in ASD
• Factors related to increased mortality.
Nonverbal Persons with ASD
• Development of measures to more efficiently identify common comorbid medical and
psychiatric conditions that can contribute to the distress experienced by nonverbal
persons with ASD
• Development of innovative methods or devices that can assist in minimizing pain and
distress experienced by nonverbal persons with ASD when undergoing medical
procedures (e.g. phlebotomy, neuroimaging)
• Development of methods and devices that can facilitate the communicative abilities of
nonverbal persons with ASD
Molecular pathophysiology and translational research
• Elucidation of molecular mechanisms and biochemical pathways, including pathways
focused on synaptic mechanisms, inflammatory processes, metabolism, and
neuropeptides that have relevance for translational research
• Discovery of diagnostic biomarkers of autism, especially ones that can index biological
subtypes
• Development of model systems and bioassays, especially high throughput ones, that can
be used to test novel methods for normalizing pathophysiology
• Proof of concept studies in animal model systems, including identification of small
molecules, peptides, proteins, and/or antibodies that hold potential for modifying core
symptoms of ASD
• Use of induced pluripotent stem cells to advance understanding of abnormalities in
autism, including elucidation of biomarkers, biological mechanisms, environmental
sensitivities, or response to novel compounds
• Animal model studies exploring the impact of treatments on biological endpoints and
the elucidation of surrogate endpoints for treatment studies
Novel treatment approaches and technologies throughout the lifespan
• Development and testing of novel treatments aimed at preventing or modifying core
symptoms of autism, or associated medical conditions throughout the lifespan
• Development and testing of novel treatments of medical conditions associated with
autism, including but not limited to sleep disorders, GI conditions, seizures, metabolic
conditions, and psychiatric co‐morbidities
• Novel treatments for individuals with ASD who are more severely affected, regressed,
and have responded slowly to behavioral/psychosocial treatment approaches, including
individuals with ASD who are nonverbal
• Randomized clinical trials (RCTs) that include biomarkers of therapeutic efficacy or for
tailoring therapy
• RCTs that include biological or surrogate endpoints (e.g., electrophysiological, structural)
• RCTs that combine pharmacological and behavioral interventions to improve efficacy for
improving core or associated symptoms of ASD
• Development and validation of sensitive and specific outcome measures that assess
change in the core features of autism and that can be used in clinical trials
• Novel technologies that provide for the efficient assessment of biomarkers and
physiological indices of treatment response in clinical trials
• Novel technologies that can be used to efficiently track treatment‐related changes in
target symptoms across a variety of naturalistic settings
• Novel technologies that can accelerate the efficacy of other treatment modalities that
impact biological, psychological, educational, occupational and/or social functioning
• Novel technologies that can improve the educational, occupational and social success of
individuals with ASD
Dissemination of empirically‐validated methods
• Development of novel methods that will allow wide access to diagnosis and treatment
services, especially in underserved and low‐resource communities
• Assessment of the effectiveness of feasible, exportable, and scalable screening,
diagnosis, and early intervention programs
• Identification of factors that promote or impede the implementation of empiricallyvalidated
clinical programs in the community
• Training programs that can build capacity of the community to provide interventions
-9
Raven
Joined: 10 May 2008
Age: 34
Gender: Male
Posts: 118
Location: Lafayette, Indiana, United States
10 Jul 2012, 5:33 pm
If the statement is aimed at individuals on the spectrum, I'd recommend simply changing "finding a cure for autism" to "ending the suffering of individuals on the autism spectrum" or something like that. I know one of the signs of Asperger's (which I can personally validate) is taking everything literally.
10 Jul 2012, 10:55 pm
-9 wrote:
If the statement is aimed at individuals on the spectrum, I'd recommend simply changing "finding a cure for autism" to "ending the suffering of individuals on the autism spectrum" or something like that. I know one of the signs of Asperger's (which I can personally validate) is taking everything literally.
That is a good point. There was a thread here, where a public relations executive of autism was reported by the individual that did that interview, as listening in to constructive criticism from those posting in that thread. I offered an opinion that the organization should do a wider demographic study of the general population, in part because disorders such as aspergers diagnosed adolescents and adults are not likely fully captured in current CDC studies that only measure children whom are 8 years of age, receiving support in classes for the developmentally disabled.
I also suggested that the organization remove the epidemic slogan from the public relations officer bio that was an issue at the time.
It was evidenced that the organization was listening because they did remove the slogan. I have no idea if my response encouraged them or not, but a couple months later during the course of that 45 page thread the organization announced on their website that they were going to do such a study, that is now funded as a 3 year $825,000 dollar study.
While they haven't removed the word cure from their general mission statement, which is evidenced as taken as a literal interpretation by many diagnosed with autism spectrum disorders, not unlike a similar phenomenon that has occurred as the phrase "autism speaks" has been literally interpreted as the organization trying to speak for all individuals diagnosed with an autism spectrum disorder instead of the actual intention as providing a united voice of concern for families with individuals on the spectrum, or that eradicating autism meant eradicating autistic individuals instead of disabling symptoms associated with a disorder, it is encouraging that the word cure is not used at all in their research mission for 2012, as it is not really necessary to use the word cure to describe the details of that research mission.
In the link below it was evidenced that at least one recommendation was immediately addressed, and I'm sure the organization took the other recommendations into consideration, in regard to the issue of literal interpretations as addressed in that thread.
http://cdn.wrongplanet.net/postxf177883-0-15.html&sid=0c3625481ccd8575ae6b3d2099e9fcce
I don't hear the word eradicate anymore out of the organization, and it appears overall they are considering this general issue in the language they use.
The general mission statement was revised not much earlier than these recommendations were provided. I have no idea, as I have no direct contacts with that organization, but I wouldn't be surprised if the next revision of the general mission of the organization reflects the current 2012 mission goals of research evidenced in the previous thread that read something to that effect as quoted in that post below:
Quote:
Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and treatment of autism or its disabling symptoms.
One would hope that might end some confusion in literal interpretations. But marketing techniques addressing the general public, will likely always have some element of miscommunication as metaphor is a necessary component in marketing.
I have noticed they are using golf and football statistics more often in lieu of those disease statistics in public service announcements.
It is ironic that metaphor can be hurtful to some with the disorder, and a tool used to inspire empathy in the general population to support beneficial efforts for individuals with the disorder. It puts Autism Speaks in a difficult marketing position, but if one can analyze the issue from the perspective of marketing to the general population as opposed to some that might likely take that marketing literally and in an offensive way, it is evident that there has been no malicious intent in the semantics that have been used by the organization, as well as attention to constructive criticism, and some evidenced change of marketing direction, in consideration of that constructive criticism, as well as what one might hope is attention to needed areas of research, that have not been pursued in the past, like a larger demographic nationwide study of the prevalence of autism spectrum disorders.
cecilfienkelstien
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-9
Raven
Joined: 10 May 2008
Age: 34
Gender: Male
Posts: 118
Location: Lafayette, Indiana, United States
11 Jul 2012, 10:06 pm
Since the organisation wants to end the suffering associated with autism, I'd recommend getting more people on the spectrum involved in the board of directors or something high up like that because it is impossible to fully understand the suffering associated with being on the autism spectrum without living it. I see they have the one author, but it may be better to get more. It would probably make the organization more appealing to people on the spectrum.
Another thing, the organisation's ads that I've seen talk about how "terrible" it is to have a child with autism. I'd recommend taking a different approach. Imagine how an autistic child feels when seeing an ad telling them that their existence causes a lot of problems for their parents. In the stereotyping and prejudice class I'm currently taking I learned that the media plays a huge part in perpetrating stereotypes. The ads make individuals on the spectrum feel as though their a burden, doing the opposite of helping end their suffering.
12 Jul 2012, 5:57 pm
-9 wrote:
Since the organisation wants to end the suffering associated with autism, I'd recommend getting more people on the spectrum involved in the board of directors or something high up like that because it is impossible to fully understand the suffering associated with being on the autism spectrum without living it. I see they have the one author, but it may be better to get more. It would probably make the organization more appealing to people on the spectrum.
Another thing, the organisation's ads that I've seen talk about how "terrible" it is to have a child with autism. I'd recommend taking a different approach. Imagine how an autistic child feels when seeing an ad telling them that their existence causes a lot of problems for their parents. In the stereotyping and prejudice class I'm currently taking I learned that the media plays a huge part in perpetrating stereotypes. The ads make individuals on the spectrum feel as though their a burden, doing the opposite of helping end their suffering.
Another thing, the organisation's ads that I've seen talk about how "terrible" it is to have a child with autism. I'd recommend taking a different approach. Imagine how an autistic child feels when seeing an ad telling them that their existence causes a lot of problems for their parents. In the stereotyping and prejudice class I'm currently taking I learned that the media plays a huge part in perpetrating stereotypes. The ads make individuals on the spectrum feel as though their a burden, doing the opposite of helping end their suffering.
Actually 10 members of their board of directors have children on the spectrum, which provides a great deal of insight into the struggles of individuals with autism spectrum disorders. While I would agree that more board members would be helpful, it does not appear that easy to recruit members that have the high level of credentials required, with autism spectrum disorders, as the board of directors of the Autism Society of America consist of 1 individual disclosing an autism spectrum disorder, which is better than none, however that organization only reports 1 member with children on the spectrum and 1 member with an adult on the spectrum..
Reviewing current public service announcements provided by autism speaks, the children are portrayed as happy children. I agree the two videos provided by the organization, years ago, that received a great deal of criticism, could be reasonably seen as offensive, however they were removed from the website of the organization years ago, because of constructive criticism provided. There seems to be no way to completely avoid the struggles some face with autism spectrum disorders, per descriptions in the PSA's, if the organization hopes to raise funds. From a current year search done on the PSA's of the organization, there doesn't seem to be anything in there that is reasonably offensive, per general PSA's provided by any charitable organization raising funds for a disorder that can be disabling.
Sweetleaf
Veteran
Joined: 6 Jan 2011
Age: 35
Gender: Female
Posts: 35,032
Location: Somewhere in Colorado
12 Jul 2012, 6:29 pm
thewhitrbbit wrote:
It's not offensive to me. I see first hand how many resources ASD does consume. How many people who can't provide for themselves, how many parents who have to live their lives knowing their kids can't take care of themselves and what will happen when their kids die.
There is a huge financial toll. Sorry if you don't like to hear it.
There is a huge financial toll. Sorry if you don't like to hear it.
Well I think I will use my pity for something worth pitying not the poor dollars that are spent on people with ASDs...I mean what we should be cured just so resources and money aren't wasted on us? That sort of thinking just makes me want to say screw it and become a bloody criminal....if society wants a burden why not give em one?
I try not to be bitter.....and I hope one day we could have a better society, but this BS idea that using money to help people is a 'waste' disgusts me and points to some disturbing realities of society, that I won't derail this thread with at least I'll do my best not to.
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Sweetleaf
Veteran
Joined: 6 Jan 2011
Age: 35
Gender: Female
Posts: 35,032
Location: Somewhere in Colorado
12 Jul 2012, 6:30 pm
-9 wrote:
Since the organisation wants to end the suffering associated with autism, I'd recommend getting more people on the spectrum involved in the board of directors or something high up like that because it is impossible to fully understand the suffering associated with being on the autism spectrum without living it. I see they have the one author, but it may be better to get more. It would probably make the organization more appealing to people on the spectrum.
Another thing, the organisation's ads that I've seen talk about how "terrible" it is to have a child with autism. I'd recommend taking a different approach. Imagine how an autistic child feels when seeing an ad telling them that their existence causes a lot of problems for their parents. In the stereotyping and prejudice class I'm currently taking I learned that the media plays a huge part in perpetrating stereotypes. The ads make individuals on the spectrum feel as though their a burden, doing the opposite of helping end their suffering.
Another thing, the organisation's ads that I've seen talk about how "terrible" it is to have a child with autism. I'd recommend taking a different approach. Imagine how an autistic child feels when seeing an ad telling them that their existence causes a lot of problems for their parents. In the stereotyping and prejudice class I'm currently taking I learned that the media plays a huge part in perpetrating stereotypes. The ads make individuals on the spectrum feel as though their a burden, doing the opposite of helping end their suffering.
very true.
_________________
We won't go back.
-9
Raven
Joined: 10 May 2008
Age: 34
Gender: Male
Posts: 118
Location: Lafayette, Indiana, United States
18 Jul 2012, 11:50 am
aghogday wrote:
Actually 10 members of their board of directors have children on the spectrum, which provides a great deal of insight into the struggles of individuals with autism spectrum disorders. While I would agree that more board members would be helpful, it does not appear that easy to recruit members that have the high level of credentials required, with autism spectrum disorders, as the board of directors of the Autism Society of America consist of 1 individual disclosing an autism spectrum disorder, which is better than none, however that organization only reports 1 member with children on the spectrum and 1 member with an adult on the spectrum.
While having a child on the spectrum allows one to have a better understanding of autism than the general population, I feel it is truly impossible to understand what having autism is like unless you have actually lived through it (there are a lot of things in the world that are this way). I'm not necessarily suggestion adding to the board of directors, but possibly adding an advisory board with members who are on the spectrum. This would also make AS more appealing to people on the spectrum, as many of those people feel as though the organisation is not adequately addressing their issues.
Sorry about my delayed response. I'm taking two classes and I help with psychological research three hours a day, four days a week so I'm pretty busy right now.
18 Jul 2012, 5:22 pm
-9 wrote:
aghogday wrote:
Actually 10 members of their board of directors have children on the spectrum, which provides a great deal of insight into the struggles of individuals with autism spectrum disorders. While I would agree that more board members would be helpful, it does not appear that easy to recruit members that have the high level of credentials required, with autism spectrum disorders, as the board of directors of the Autism Society of America consist of 1 individual disclosing an autism spectrum disorder, which is better than none, however that organization only reports 1 member with children on the spectrum and 1 member with an adult on the spectrum.
While having a child on the spectrum allows one to have a better understanding of autism than the general population, I feel it is truly impossible to understand what having autism is like unless you have actually lived through it (there are a lot of things in the world that are this way). I'm not necessarily suggestion adding to the board of directors, but possibly adding an advisory board with members who are on the spectrum. This would also make AS more appealing to people on the spectrum, as many of those people feel as though the organisation is not adequately addressing their issues.
Sorry about my delayed response. I'm taking two classes and I help with psychological research three hours a day, four days a week so I'm pretty busy right now.
I agree, however somewhat dismayed at the response of some people in the neurodiversity movement's response to the addition of John Elder Robison, where some have criticized him for joining the organization, others refer to him as an unqualified token, and other have gone as far as censoring him on a website, where he attempted to talk about the research he has been involved with.
John Elder Robison does have qualifications as a College Adjunct Professor and one in involved in actual research associated with autism spectrum disorders, but even the ASAN organization publicly refer to his position as a token one within the ranks of the autism speaks organization, rather than referring to him as a valued contributing member of that organization.
It's highly unlikely that many associated with the neurodiversity movement would be interested in joining the scientific advisory boards, however it would definitely be a positive thing if noted qualified individuals in the autism community such as Michelle Dawson were to show an interest, which one would think she might considering her research group comprised of individuals on the spectrum have received over 400K in research dollars funded by Autism Speaks. But, Autism Speaks cannot appoint anyone to the scientific advisory boards, if they are not interested, or reasonably qualified through education or experience.
Autism Speaks does not appear to be the only element in the autism community evidenced as making the appointment of individuals on the spectrum to their scientific advisory boards difficult. In someways the organization is evidenced as stuck between a rock and a hard place in an attempt to meet the concerns of everyone in the autism community.
But never the less, time marches on, and the organization continues to improve it's direction on research into issues of those in the autism community, including some of those that have been expressed among those in the neurodiversity movement regardless of unwarranted criticism by those whom the organization is evidenced as supporting by doing research that will potentially impact them in a positive manner at some point in their future.
It is likely that John Elder Robison's contributions to the organization have made a significant difference in this area, but it is disappointing that instead of support he receives so much criticism from some in the autism community, particularly criticism that is not reasonably warranted, like why would he want to join the organization, or avoid him because he is an Autism Speaks token autistic.
Fortunately there are many in life that are evidenced as having very thick skin, and will continue to march ahead to attempt to do what they see as the right thing, regardless of unwarranted criticism.
21 Jul 2012, 4:12 pm
I think people severely overreact to Autism Speaks. There are a lot of significantly impaired autistics out there, and Autism Speaks is intended to speak for those autistics, not us. And in severe cases, the negatives of Autism undeniably outweigh the positives. Low-functioning Autism is a problem, and a cure for Autism could be very helpful for all sorts of Autistic individuals, low-functioning or not.
VAGraduateStudent
Deinonychus
Joined: 13 Apr 2012
Age: 48
Gender: Female
Posts: 340
Location: Virginia, USA
23 Jul 2012, 12:10 pm
Not everyone can live independently and that's not necessarily a bad thing. For every person that needs help there's someone else who loves them and is fine with doing it. So lower functioning autistic people are not necessarily living a low quality of life. I agree that there should be resources for them and for their caregivers, but I don't think Autism Speaks is that resource.
When I watched the OSU video and saw all those little signs I thought of graves. It was ominous. I agree with what they said on the video about the dehumanizing statements on the backs of the signs. What if instead of doing that they had a person's picture on the front and said something about them on the back and then put at the end, oh and I also have autism. Wouldn't that have been a much better way of raising awareness but keeping the human element in?
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