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ASPartOfMe
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01 Nov 2017, 1:06 am

Revamped Scientific Plan Forthcoming At Autism Speaks

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As the nation’s largest autism advocacy group works to reshape its scientific agenda, members of the community are urging the nonprofit to prioritize work that affects quality of life for those on the spectrum.

Autism Speaks solicited input from members of the community — everyone from people with ASD to family members, researchers and other stakeholders — over the summer on the direction the group should take with a new three-year strategic plan for science.

The results, released this month, reflect a desire to know more about co-occurring conditions like sensory, sleep and gastrointestinal troubles as well as the overall health and well-being of those with the developmental disorder and an emphasis on transition and lifespan issues.

More than 6,000 people participated in the survey, the majority of whom are family members of those with autism, the group said.

Compared to a similar survey in 2012, Autism Speaks found that respondents this year are more interested in the experiences of those entering adulthood and less concerned about immune dysfunction and environmental factors.

Many survey respondents specifically indicated that they oppose research on curing or preventing autism.

The findings will help shape how Autism Speaks determines what types of studies to fund and the impact could be significant. As of 2013, the nonprofit handed out $18.6 million in grants making it one of the largest funders of autism research, according to a federal report.


Science Strategic Planning Survey August 2017


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CockneyRebel
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05 Nov 2017, 7:25 pm

I almost lost my dinner reading all that. They want to erase autism and I disagree with their plan. Why don't they replace their puzzle piece with a swastika and be done with it. I'm not supporting them until they see autistic people as worthy of life. I really hope they go under.


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Lintar
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07 Dec 2017, 6:56 pm

CockneyRebel wrote:
I almost lost my dinner reading all that. They want to erase autism and I disagree with their plan. Why don't they replace their puzzle piece with a swastika and be done with it. I'm not supporting them until they see autistic people as worthy of life. I really hope they go under.


I've noticed many people seem to conflate "curing and/or preventing autism" with "kill all autistics". Autism Speaks does not advocate genocide! They don't want to kill anyone, they just want there to be available for those who want it a treatment or cure. Would you advocate there never be any possible hope for those who have, for example, schizophrenia?

They want to erase autism? GOOD! It causes nothing but pain, misery, misunderstandings and chronic welfare dependence. It's good for precisely nothing at all.



CockneyRebel
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12 Dec 2017, 5:57 pm

Lintar wrote:
CockneyRebel wrote:
I almost lost my dinner reading all that. They want to erase autism and I disagree with their plan. Why don't they replace their puzzle piece with a swastika and be done with it. I'm not supporting them until they see autistic people as worthy of life. I really hope they go under.


I've noticed many people seem to conflate "curing and/or preventing autism" with "kill all autistics". Autism Speaks does not advocate genocide! They don't want to kill anyone, they just want there to be available for those who want it a treatment or cure. Would you advocate there never be any possible hope for those who have, for example, schizophrenia?

They want to erase autism? GOOD! It causes nothing but pain, misery, misunderstandings and chronic welfare dependence. It's good for precisely nothing at all.


I'm sorry you feel that way. I choose to celebrate my autism. Have a nice day. :)


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Lintar
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12 Dec 2017, 7:10 pm

CockneyRebel wrote:
Lintar wrote:
CockneyRebel wrote:
I almost lost my dinner reading all that. They want to erase autism and I disagree with their plan. Why don't they replace their puzzle piece with a swastika and be done with it. I'm not supporting them until they see autistic people as worthy of life. I really hope they go under.


I've noticed many people seem to conflate "curing and/or preventing autism" with "kill all autistics". Autism Speaks does not advocate genocide! They don't want to kill anyone, they just want there to be available for those who want it a treatment or cure. Would you advocate there never be any possible hope for those who have, for example, schizophrenia?

They want to erase autism? GOOD! It causes nothing but pain, misery, misunderstandings and chronic welfare dependence. It's good for precisely nothing at all.


I'm sorry you feel that way. I choose to celebrate my autism. Have a nice day. :)


What is there to celebrate? Seriously, I would like to know. Sensory sensitivities that, for example, place limits upon the types of places we can visit (ex. shopping centres, cinemas)? Being shunned for most of our lives because we don't understand the way most people - over 95% - communicate? Chronic stomach issues? The constant anxiety over, usually, nothing at all?



RubyWings91
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13 Dec 2017, 5:45 pm

Lintar wrote:
CockneyRebel wrote:
Lintar wrote:
CockneyRebel wrote:
I almost lost my dinner reading all that. They want to erase autism and I disagree with their plan. Why don't they replace their puzzle piece with a swastika and be done with it. I'm not supporting them until they see autistic people as worthy of life. I really hope they go under.


I've noticed many people seem to conflate "curing and/or preventing autism" with "kill all autistics". Autism Speaks does not advocate genocide! They don't want to kill anyone, they just want there to be available for those who want it a treatment or cure. Would you advocate there never be any possible hope for those who have, for example, schizophrenia?

They want to erase autism? GOOD! It causes nothing but pain, misery, misunderstandings and chronic welfare dependence. It's good for precisely nothing at all.


I'm sorry you feel that way. I choose to celebrate my autism. Have a nice day. :)


What is there to celebrate? Seriously, I would like to know. Sensory sensitivities that, for example, place limits upon the types of places we can visit (ex. shopping centres, cinemas)? Being shunned for most of our lives because we don't understand the way most people - over 95% - communicate? Chronic stomach issues? The constant anxiety over, usually, nothing at all?


As someone with a mild case of AS, I would like to say that I feel that although the conditions on the Autism Spectrum come with many disadvantages, that is not all there is to them.

My AS has had a major influence on the good things that happened in my life, too. Following my intense interest has led to my obtaining a Bachelor's Degree in Conservation Biology. I suspect that my visual and audio sensitivity might have influenced my interest in art and music. My extreme work drive and attention to detail have contributed to my ability to get work done. Heck, even the negative social that I went through during my childhood as a result of my difference from the NTs has lead me to become more sensitive to people, especially those who are rejected by a group for being different.

Now, I'm not going to claim that there aren't issues, because there are and I am aware that mine are extremely mild compared to many people. I have to deal with audio and visual issues. Social interactions are a stressful, exhausting experience. Meltdowns suck. I have my fair share of rants over these and other issues that come with this but it's still a major part of who I am and I would never wish it away.

I honestly think that the real problem is that we live in a world that does not favor people who are different.



CockneyRebel
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13 Dec 2017, 8:13 pm

Lintar wrote:
CockneyRebel wrote:
Lintar wrote:
CockneyRebel wrote:
I almost lost my dinner reading all that. They want to erase autism and I disagree with their plan. Why don't they replace their puzzle piece with a swastika and be done with it. I'm not supporting them until they see autistic people as worthy of life. I really hope they go under.


I've noticed many people seem to conflate "curing and/or preventing autism" with "kill all autistics". Autism Speaks does not advocate genocide! They don't want to kill anyone, they just want there to be available for those who want it a treatment or cure. Would you advocate there never be any possible hope for those who have, for example, schizophrenia?

They want to erase autism? GOOD! It causes nothing but pain, misery, misunderstandings and chronic welfare dependence. It's good for precisely nothing at all.


I'm sorry you feel that way. I choose to celebrate my autism. Have a nice day. :)


What is there to celebrate? Seriously, I would like to know. Sensory sensitivities that, for example, place limits upon the types of places we can visit (ex. shopping centres, cinemas)? Being shunned for most of our lives because we don't understand the way most people - over 95% - communicate? Chronic stomach issues? The constant anxiety over, usually, nothing at all?


I think there are two different reasons that you might be going after me. The first reason is because you're trying to frighten me into believing with you, because you know that my stance on autism and the sanctity of human life are the polar opposite of yours. The second reason is because you might have a secret agenda to shut me up, chase me off of WP and make me cry. It's not going to work on me. I think that's very cowardly if you ask me. I feel that autism is something to celebrate and you don't. I'm not going to change you and you're not going to change me and I do not wish to discuss this topic with you any further and if you quote me this time, I will not respond.


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Lintar
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13 Dec 2017, 10:09 pm

CockneyRebel wrote:
Lintar wrote:
CockneyRebel wrote:
Lintar wrote:
CockneyRebel wrote:
I almost lost my dinner reading all that. They want to erase autism and I disagree with their plan. Why don't they replace their puzzle piece with a swastika and be done with it. I'm not supporting them until they see autistic people as worthy of life. I really hope they go under.


I've noticed many people seem to conflate "curing and/or preventing autism" with "kill all autistics". Autism Speaks does not advocate genocide! They don't want to kill anyone, they just want there to be available for those who want it a treatment or cure. Would you advocate there never be any possible hope for those who have, for example, schizophrenia?

They want to erase autism? GOOD! It causes nothing but pain, misery, misunderstandings and chronic welfare dependence. It's good for precisely nothing at all.


I'm sorry you feel that way. I choose to celebrate my autism. Have a nice day. :)


What is there to celebrate? Seriously, I would like to know. Sensory sensitivities that, for example, place limits upon the types of places we can visit (ex. shopping centres, cinemas)? Being shunned for most of our lives because we don't understand the way most people - over 95% - communicate? Chronic stomach issues? The constant anxiety over, usually, nothing at all?


I think there are two different reasons that you might be going after me. The first reason is because you're trying to frighten me into believing with you, because you know that my stance on autism and the sanctity of human life are the polar opposite of yours. The second reason is because you might have a secret agenda to shut me up, chase me off of WP and make me cry. It's not going to work on me. I think that's very cowardly if you ask me. I feel that autism is something to celebrate and you don't. I'm not going to change you and you're not going to change me and I do not wish to discuss this topic with you any further and if you quote me this time, I will not respond.


I'm not "going after you". I'm disagreeing with you. There's a BIG difference.

The sanctity of human life is something I take seriously too. I would not recommend that babies diagnosed with any form of autism be aborted, and this is the position of "Autism Speaks" as well. They are not advocating genocide; that's an absurd lie.

Okay, so you will not respond. I just do not care, because your response was silly and immature. Playing the victim does not work with me.



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14 Dec 2017, 6:45 pm

RubyWings91 wrote:
Lintar wrote:
CockneyRebel wrote:
Lintar wrote:
CockneyRebel wrote:
I almost lost my dinner reading all that. They want to erase autism and I disagree with their plan. Why don't they replace their puzzle piece with a swastika and be done with it. I'm not supporting them until they see autistic people as worthy of life. I really hope they go under.


I've noticed many people seem to conflate "curing and/or preventing autism" with "kill all autistics". Autism Speaks does not advocate genocide! They don't want to kill anyone, they just want there to be available for those who want it a treatment or cure. Would you advocate there never be any possible hope for those who have, for example, schizophrenia?

They want to erase autism? GOOD! It causes nothing but pain, misery, misunderstandings and chronic welfare dependence. It's good for precisely nothing at all.


I'm sorry you feel that way. I choose to celebrate my autism. Have a nice day. :)


What is there to celebrate? Seriously, I would like to know. Sensory sensitivities that, for example, place limits upon the types of places we can visit (ex. shopping centres, cinemas)? Being shunned for most of our lives because we don't understand the way most people - over 95% - communicate? Chronic stomach issues? The constant anxiety over, usually, nothing at all?


As someone with a mild case of AS, I would like to say that I feel that although the conditions on the Autism Spectrum come with many disadvantages, that is not all there is to them.

My AS has had a major influence on the good things that happened in my life, too. Following my intense interest has led to my obtaining a Bachelor's Degree in Conservation Biology. I suspect that my visual and audio sensitivity might have influenced my interest in art and music. My extreme work drive and attention to detail have contributed to my ability to get work done. Heck, even the negative social that I went through during my childhood as a result of my difference from the NTs has lead me to become more sensitive to people, especially those who are rejected by a group for being different.

Now, I'm not going to claim that there aren't issues, because there are and I am aware that mine are extremely mild compared to many people. I have to deal with audio and visual issues. Social interactions are a stressful, exhausting experience. Meltdowns suck. I have my fair share of rants over these and other issues that come with this but it's still a major part of who I am and I would never wish it away.

I honestly think that the real problem is that we live in a world that does not favor people who are different.


It's good that things have worked out for you, and that you were actually able to use what would otherwise be a handicap to your advantage, but it's very rare for someone to be able to do this with autism/Asperger's Syndrome. For me personally it has been the cause of one disappointment and one missed opportunity after another, which has led to bitterness, frustration and hopelessness. Anger as well. I see other people, the ones we call NT's, go about their lives with relative ease, not having the problems we have, and it's difficult to not feel envious.



RubyWings91
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16 Dec 2017, 5:40 pm

Lintar wrote:
RubyWings91 wrote:
Lintar wrote:
CockneyRebel wrote:
Lintar wrote:
CockneyRebel wrote:
I almost lost my dinner reading all that. They want to erase autism and I disagree with their plan. Why don't they replace their puzzle piece with a swastika and be done with it. I'm not supporting them until they see autistic people as worthy of life. I really hope they go under.


I've noticed many people seem to conflate "curing and/or preventing autism" with "kill all autistics". Autism Speaks does not advocate genocide! They don't want to kill anyone, they just want there to be available for those who want it a treatment or cure. Would you advocate there never be any possible hope for those who have, for example, schizophrenia?

They want to erase autism? GOOD! It causes nothing but pain, misery, misunderstandings and chronic welfare dependence. It's good for precisely nothing at all.


I'm sorry you feel that way. I choose to celebrate my autism. Have a nice day. :)


What is there to celebrate? Seriously, I would like to know. Sensory sensitivities that, for example, place limits upon the types of places we can visit (ex. shopping centres, cinemas)? Being shunned for most of our lives because we don't understand the way most people - over 95% - communicate? Chronic stomach issues? The constant anxiety over, usually, nothing at all?


As someone with a mild case of AS, I would like to say that I feel that although the conditions on the Autism Spectrum come with many disadvantages, that is not all there is to them.

My AS has had a major influence on the good things that happened in my life, too. Following my intense interest has led to my obtaining a Bachelor's Degree in Conservation Biology. I suspect that my visual and audio sensitivity might have influenced my interest in art and music. My extreme work drive and attention to detail have contributed to my ability to get work done. Heck, even the negative social that I went through during my childhood as a result of my difference from the NTs has lead me to become more sensitive to people, especially those who are rejected by a group for being different.

Now, I'm not going to claim that there aren't issues, because there are and I am aware that mine are extremely mild compared to many people. I have to deal with audio and visual issues. Social interactions are a stressful, exhausting experience. Meltdowns suck. I have my fair share of rants over these and other issues that come with this but it's still a major part of who I am and I would never wish it away.

I honestly think that the real problem is that we live in a world that does not favor people who are different.


It's good that things have worked out for you, and that you were actually able to use what would otherwise be a handicap to your advantage, but it's very rare for someone to be able to do this with autism/Asperger's Syndrome. For me personally it has been the cause of one disappointment and one missed opportunity after another, which has led to bitterness, frustration and hopelessness. Anger as well. I see other people, the ones we call NT's, go about their lives with relative ease, not having the problems we have, and it's difficult to not feel envious.


I'm sorry that nothing has worked out for you so far because of it. To be honest, I think a major part of my success is I grew up in a supportive environment at home, especially from my dad and continue to have that support when I need it, like right now while I'm struggling to find a job. I agree that there's a lot of things that NTs take for granted that I would love to be able to do.



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17 Dec 2017, 8:45 am

The thing that lead to my success is that I have the tenacity and stubborn nature to prove all the naysayers in my life wrong. I was told I would never amount to much by my dad and my teachers, so I decided to prove them wrong.


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