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I came across a blog via tumblr [another blog LOL]

http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html

And I was a little taken back. My son was dignosed a year ago Feb. 2012 and I found Autism Speaks helpful even did the walk.


But in the past few months I have come across quite a numberous amount of people / blogs that dislike them. I guess it's the "cure for autism" thing I am not sure exactly.

But how do you feel about the Group Autism Speaks. I guess because I'm still a "newbie" to this DX, I can be a little ignorant to the different views so please forgive me If I offended you in anyway.


PS the link to blog is NOT my blog. Just one I came across

by on Mar. 22, 2013 at 12:21 PM
Replies (21-30):
Bluerose1482
by Bronze Member on Mar. 24, 2013 at 6:23 AM
1 mom liked this

I don't dislike them, but I don't give them money either.  They have raised awareness about autism and lobbied to get therapies covered by insurance.  So, I'll give them credit where credit is due. 

In my community, ARC and Families Helping Families do a much better job of meeting the needs of disabled people and providing support to their families.  When I donate money, that's where I donate it because I want my money to be used to help actual living, breathing people who need help.  That's where I think money is needed and should be spent.

As long as AS continues to exclude austic people from their board of directors and spend massive amounts of money searching for a cure (which I believe doesn't exist), I won't donate money to them.  They are well within their rights to decide who will sit on the board of directors and how they will spend the money raised on their behalf, and I am well within my rights to give my money to other organizations. 

kmugs
by on Mar. 24, 2013 at 9:55 PM



Quoting KatyTylersMom:

As for Autism Speaks wanting a cure and some members of the autism community vehemently disagreeing with that priority, I can only say that for myself the blogs and articles I have read have left me feeling very sad and angry towards the authors and their lack of empathy and perspective on being a parent of a severely impacted autistic child.  I'm not even speaking of myself here because my kids are able to function fairly well, either talk or are learning to talk, and are young such that they have many years of therapies ahead to hopefully get them into a position of being able to lead the lives they desire and choose for themselves.  BUT clearly there are so many people, children and adults, that are SO severely disabled by autism that will never be able to do so.  And it really angers me to hear or read arguments against a cure that start with "we are just different not better or worse and we don't need a cure" because NO ONE has the right to choose for others across the board like that.  Not us "NT" parents for our adult offspring be they NT or ASD, and certainly not an autistic person who is capable of fucntioning in the community, leading the life they choose and enjoy, and can communicate for an autistic person who does not, and cannot. 



you rock  This is very much how I feel - but you said far better than I ever did.  

drpatriot
by on Mar. 25, 2013 at 7:06 AM

Tell your caffinated Aspie friend that there has been a study that caffine is actually GOOD for us. I am an Aspie with a caffeen adiction and somebody posted a study on face book saying it is good for us.

Quoting Basherte:

Those 3 would be my complaints as well. I don't feel that there is a cure for autism. I don't think we should be wasting money or energy on that avenue. I think we should be spending money on education for those with autism, as well as those without it so that they can understand autism a lot better than they do. Most of the people that I talk to that don't know someone with autism seem to think that all autistic people are like the one in the movie "Rain Man" and that just isn't true.

I also think that people feel that if the person looks "normal" then any issues that that person has is something that can be taken care of by more discipline. That they don't have issues or problems. They are just acting out and displaying bad behavior that a swat on the butt could 'cure'.

I don't know that much about Autism Speaks. 

My son's one therapist recommended us watching Temple Grandin. I learned a lot from that movie. I also learned that it affects everyone differently. My DH sent Temple a note via the computer and got a response from her. She sent along some inspiration, and some advice. I was touched. 

I get a lot of support from this group, as well as another friend who has autism. He's around 30 right now. He was diagnosed later in life. I talk to him every day. Right now he is not drinking coffee for a week. (*giggles*) I couldn't do that. He is doing this so that he doesn't have to drink too much a day to get the same effect as what he normally gets from one cup. His only addiction is caffeine. I love his mind. I love him as a friend, as well, but I can't say it like that. 

Quoting MamaFrankie:

thank you so much for your detailed input. i certainly learned alot!

Quoting KatyTylersMom:

I like the amount of attention they bring to autism, I like their general message, and I think that for parents of young kids (which I am) they have a huge amount of articles and suggestions for anything from potty training to where to get help with insurance issues. 

From what I have read on blogs or articles where people are blasting Autism Speaks their objections are as follows: 

1) It's an organization devoted to autism with NO autistic people on their board or in positions of power.  This is a huge deal to the autistic community as they feel that without guidance and input from autistics, Autism Speaks cannot claim to represent the best interests of their community. 

2) Autism Speaks is openly in favor of finding a cure for autism.  Again, many autistics who are satisfied with their daily lives and happily pursuing their dreams find this offensive. 

3) Autism Speaks is mainly focused on helping young children with autism and the community feels that AS has ingored the needs of older kids and adults with autism who are facing a complete LACK of any community resources to help them once they age-out of the school system. 

Anyhow, those are the "big 3" of complaints and probably the source of 99% of the hate directed at AS.  I can't say as I fault people for wanting AS to focus on adults with autism AS MUCH AS they focus on the young kids, I feel that is completely fair and necessary especially now with 1/50 diagnosed and 1/50 soon to be adults needing help with life skills, living arrangements, jobs, transportation, etc.

I also think it's fair to want an autistic board member (or many board members) BUT I also feel like if you don't like what AS has to offer, you can be a board member of your own organization, and from what I saw when I watched a congressional meeting with many organizations including Autism Speaks and the CDC, there ARE many autism groups that are run by autistics and focus on different aspects of autism.  Now, they are not nearly so well known nor do they receive the funding that AS does so I can understand the frustration there. 

As for Autism Speaks wanting a cure and some members of the autism community vehemently disagreeing with that priority, I can only say that for myself the blogs and articles I have read have left me feeling very sad and angry towards the authors and their lack of empathy and perspective on being a parent of a severely impacted autistic child.  I'm not even speaking of myself here because my kids are able to function fairly well, either talk or are learning to talk, and are young such that they have many years of therapies ahead to hopefully get them into a position of being able to lead the lives they desire and choose for themselves.  BUT clearly there are so many people, children and adults, that are SO severely disabled by autism that will never be able to do so.  And it really angers me to hear or read arguments against a cure that start with "we are just different not better or worse and we don't need a cure" because NO ONE has the right to choose for others across the board like that.  Not us "NT" parents for our adult offspring be they NT or ASD, and certainly not an autistic person who is capable of fucntioning in the community, leading the life they choose and enjoy, and can communicate for an autistic person who does not, and cannot. 

I read a truly enjoyable book ("Ido in Autismland" for those interested) by a teenage boy (man really after his experiences) who finally gained access to facilitated communication, learned to use a letterboard and finally now an iPad to communicate and write.  He describes in detail the frustration of being an intact thinking, reasoning, and very smart person on the inside and a completely dysfunctional and often unpredictable person on the outside.  And he says that he would take the cure for autism in a hot minute.  So clearly the autistic community is not all of one mind on the issue of a cure and it should be left to the individual to decide if they want it or not.  And for individuals who are incapable of making their decisions known then it is left (as with everything else in their lives from housing to feeding to activities etc.) to their caregivers to make that decision. 

I find it completely fair to ask Autism Speaks to focus more effort on helping the autistics that are here NOW as opposed to spending money on the search for a cure, but I find it grossly unfair and unreasonable to deny that autism needs a cure or at least a solid *medical* treatment plan to complement and augment the years of therapies. 

Curing autism will not change the person my son is.  He will still be funny, naughty, silly, hilarious, sweet, snuggly, and completely in awe of his sister with or without autism.  I do not believe that a person's personality is defined by or tied to autism.  I believe that life experiences related to autism can certainly change our personality - more patient, more angry, more loving, more skeptical, more cynical etc. but the base of who we are is untouched by autism and it's always our choice as to how we let autism impact that core of ourselves.  To me a cure for autism means removing all the things that block my son from sharing himself with the world and as he is a wonderful person, it's impossible for me to do anything other than want that. 




Basherte
by Silver Member on Mar. 25, 2013 at 7:10 AM

He's on a fixed income. So he does it more for the cost. Keeping it low. But I'll let him know. Do you have a link that I could show him? He prefers to have back up. 

Quoting drpatriot:

Tell your caffinated Aspie friend that there has been a study that caffine is actually GOOD for us. I am an Aspie with a caffeen adiction and somebody posted a study on face book saying it is good for us.

Quoting Basherte:

Those 3 would be my complaints as well. I don't feel that there is a cure for autism. I don't think we should be wasting money or energy on that avenue. I think we should be spending money on education for those with autism, as well as those without it so that they can understand autism a lot better than they do. Most of the people that I talk to that don't know someone with autism seem to think that all autistic people are like the one in the movie "Rain Man" and that just isn't true.

I also think that people feel that if the person looks "normal" then any issues that that person has is something that can be taken care of by more discipline. That they don't have issues or problems. They are just acting out and displaying bad behavior that a swat on the butt could 'cure'.

I don't know that much about Autism Speaks. 

My son's one therapist recommended us watching Temple Grandin. I learned a lot from that movie. I also learned that it affects everyone differently. My DH sent Temple a note via the computer and got a response from her. She sent along some inspiration, and some advice. I was touched. 

I get a lot of support from this group, as well as another friend who has autism. He's around 30 right now. He was diagnosed later in life. I talk to him every day. Right now he is not drinking coffee for a week. (*giggles*) I couldn't do that. He is doing this so that he doesn't have to drink too much a day to get the same effect as what he normally gets from one cup. His only addiction is caffeine. I love his mind. I love him as a friend, as well, but I can't say it like that. 

Quoting MamaFrankie:

thank you so much for your detailed input. i certainly learned alot!

Quoting KatyTylersMom:

I like the amount of attention they bring to autism, I like their general message, and I think that for parents of young kids (which I am) they have a huge amount of articles and suggestions for anything from potty training to where to get help with insurance issues. 

From what I have read on blogs or articles where people are blasting Autism Speaks their objections are as follows: 

1) It's an organization devoted to autism with NO autistic people on their board or in positions of power.  This is a huge deal to the autistic community as they feel that without guidance and input from autistics, Autism Speaks cannot claim to represent the best interests of their community. 

2) Autism Speaks is openly in favor of finding a cure for autism.  Again, many autistics who are satisfied with their daily lives and happily pursuing their dreams find this offensive. 

3) Autism Speaks is mainly focused on helping young children with autism and the community feels that AS has ingored the needs of older kids and adults with autism who are facing a complete LACK of any community resources to help them once they age-out of the school system. 

Anyhow, those are the "big 3" of complaints and probably the source of 99% of the hate directed at AS.  I can't say as I fault people for wanting AS to focus on adults with autism AS MUCH AS they focus on the young kids, I feel that is completely fair and necessary especially now with 1/50 diagnosed and 1/50 soon to be adults needing help with life skills, living arrangements, jobs, transportation, etc.

I also think it's fair to want an autistic board member (or many board members) BUT I also feel like if you don't like what AS has to offer, you can be a board member of your own organization, and from what I saw when I watched a congressional meeting with many organizations including Autism Speaks and the CDC, there ARE many autism groups that are run by autistics and focus on different aspects of autism.  Now, they are not nearly so well known nor do they receive the funding that AS does so I can understand the frustration there. 

As for Autism Speaks wanting a cure and some members of the autism community vehemently disagreeing with that priority, I can only say that for myself the blogs and articles I have read have left me feeling very sad and angry towards the authors and their lack of empathy and perspective on being a parent of a severely impacted autistic child.  I'm not even speaking of myself here because my kids are able to function fairly well, either talk or are learning to talk, and are young such that they have many years of therapies ahead to hopefully get them into a position of being able to lead the lives they desire and choose for themselves.  BUT clearly there are so many people, children and adults, that are SO severely disabled by autism that will never be able to do so.  And it really angers me to hear or read arguments against a cure that start with "we are just different not better or worse and we don't need a cure" because NO ONE has the right to choose for others across the board like that.  Not us "NT" parents for our adult offspring be they NT or ASD, and certainly not an autistic person who is capable of fucntioning in the community, leading the life they choose and enjoy, and can communicate for an autistic person who does not, and cannot. 

I read a truly enjoyable book ("Ido in Autismland" for those interested) by a teenage boy (man really after his experiences) who finally gained access to facilitated communication, learned to use a letterboard and finally now an iPad to communicate and write.  He describes in detail the frustration of being an intact thinking, reasoning, and very smart person on the inside and a completely dysfunctional and often unpredictable person on the outside.  And he says that he would take the cure for autism in a hot minute.  So clearly the autistic community is not all of one mind on the issue of a cure and it should be left to the individual to decide if they want it or not.  And for individuals who are incapable of making their decisions known then it is left (as with everything else in their lives from housing to feeding to activities etc.) to their caregivers to make that decision. 

I find it completely fair to ask Autism Speaks to focus more effort on helping the autistics that are here NOW as opposed to spending money on the search for a cure, but I find it grossly unfair and unreasonable to deny that autism needs a cure or at least a solid *medical* treatment plan to complement and augment the years of therapies. 

Curing autism will not change the person my son is.  He will still be funny, naughty, silly, hilarious, sweet, snuggly, and completely in awe of his sister with or without autism.  I do not believe that a person's personality is defined by or tied to autism.  I believe that life experiences related to autism can certainly change our personality - more patient, more angry, more loving, more skeptical, more cynical etc. but the base of who we are is untouched by autism and it's always our choice as to how we let autism impact that core of ourselves.  To me a cure for autism means removing all the things that block my son from sharing himself with the world and as he is a wonderful person, it's impossible for me to do anything other than want that. 





CafeMom Tickers
drpatriot
by on Mar. 25, 2013 at 7:35 AM

I cant put links in these things but Wrong Planet has a thread on caffeine and autism. I live with my parents who more or less support my caffeine habit. Have him google it and there are some blogs like Caffiene Autism Mom that can explain that it could be a better than typical medications for treatment. 

Quoting Basherte:

He's on a fixed income. So he does it more for the cost. Keeping it low. But I'll let him know. Do you have a link that I could show him? He prefers to have back up. 

Quoting drpatriot:

Tell your caffinated Aspie friend that there has been a study that caffine is actually GOOD for us. I am an Aspie with a caffeen adiction and somebody posted a study on face book saying it is good for us.

Quoting Basherte:

Those 3 would be my complaints as well. I don't feel that there is a cure for autism. I don't think we should be wasting money or energy on that avenue. I think we should be spending money on education for those with autism, as well as those without it so that they can understand autism a lot better than they do. Most of the people that I talk to that don't know someone with autism seem to think that all autistic people are like the one in the movie "Rain Man" and that just isn't true.

I also think that people feel that if the person looks "normal" then any issues that that person has is something that can be taken care of by more discipline. That they don't have issues or problems. They are just acting out and displaying bad behavior that a swat on the butt could 'cure'.

I don't know that much about Autism Speaks. 

My son's one therapist recommended us watching Temple Grandin. I learned a lot from that movie. I also learned that it affects everyone differently. My DH sent Temple a note via the computer and got a response from her. She sent along some inspiration, and some advice. I was touched. 

I get a lot of support from this group, as well as another friend who has autism. He's around 30 right now. He was diagnosed later in life. I talk to him every day. Right now he is not drinking coffee for a week. (*giggles*) I couldn't do that. He is doing this so that he doesn't have to drink too much a day to get the same effect as what he normally gets from one cup. His only addiction is caffeine. I love his mind. I love him as a friend, as well, but I can't say it like that. 

Quoting MamaFrankie:

thank you so much for your detailed input. i certainly learned alot!

Quoting KatyTylersMom:

I like the amount of attention they bring to autism, I like their general message, and I think that for parents of young kids (which I am) they have a huge amount of articles and suggestions for anything from potty training to where to get help with insurance issues. 

From what I have read on blogs or articles where people are blasting Autism Speaks their objections are as follows: 

1) It's an organization devoted to autism with NO autistic people on their board or in positions of power.  This is a huge deal to the autistic community as they feel that without guidance and input from autistics, Autism Speaks cannot claim to represent the best interests of their community. 

2) Autism Speaks is openly in favor of finding a cure for autism.  Again, many autistics who are satisfied with their daily lives and happily pursuing their dreams find this offensive. 

3) Autism Speaks is mainly focused on helping young children with autism and the community feels that AS has ingored the needs of older kids and adults with autism who are facing a complete LACK of any community resources to help them once they age-out of the school system. 

Anyhow, those are the "big 3" of complaints and probably the source of 99% of the hate directed at AS.  I can't say as I fault people for wanting AS to focus on adults with autism AS MUCH AS they focus on the young kids, I feel that is completely fair and necessary especially now with 1/50 diagnosed and 1/50 soon to be adults needing help with life skills, living arrangements, jobs, transportation, etc.

I also think it's fair to want an autistic board member (or many board members) BUT I also feel like if you don't like what AS has to offer, you can be a board member of your own organization, and from what I saw when I watched a congressional meeting with many organizations including Autism Speaks and the CDC, there ARE many autism groups that are run by autistics and focus on different aspects of autism.  Now, they are not nearly so well known nor do they receive the funding that AS does so I can understand the frustration there. 

As for Autism Speaks wanting a cure and some members of the autism community vehemently disagreeing with that priority, I can only say that for myself the blogs and articles I have read have left me feeling very sad and angry towards the authors and their lack of empathy and perspective on being a parent of a severely impacted autistic child.  I'm not even speaking of myself here because my kids are able to function fairly well, either talk or are learning to talk, and are young such that they have many years of therapies ahead to hopefully get them into a position of being able to lead the lives they desire and choose for themselves.  BUT clearly there are so many people, children and adults, that are SO severely disabled by autism that will never be able to do so.  And it really angers me to hear or read arguments against a cure that start with "we are just different not better or worse and we don't need a cure" because NO ONE has the right to choose for others across the board like that.  Not us "NT" parents for our adult offspring be they NT or ASD, and certainly not an autistic person who is capable of fucntioning in the community, leading the life they choose and enjoy, and can communicate for an autistic person who does not, and cannot. 

I read a truly enjoyable book ("Ido in Autismland" for those interested) by a teenage boy (man really after his experiences) who finally gained access to facilitated communication, learned to use a letterboard and finally now an iPad to communicate and write.  He describes in detail the frustration of being an intact thinking, reasoning, and very smart person on the inside and a completely dysfunctional and often unpredictable person on the outside.  And he says that he would take the cure for autism in a hot minute.  So clearly the autistic community is not all of one mind on the issue of a cure and it should be left to the individual to decide if they want it or not.  And for individuals who are incapable of making their decisions known then it is left (as with everything else in their lives from housing to feeding to activities etc.) to their caregivers to make that decision. 

I find it completely fair to ask Autism Speaks to focus more effort on helping the autistics that are here NOW as opposed to spending money on the search for a cure, but I find it grossly unfair and unreasonable to deny that autism needs a cure or at least a solid *medical* treatment plan to complement and augment the years of therapies. 

Curing autism will not change the person my son is.  He will still be funny, naughty, silly, hilarious, sweet, snuggly, and completely in awe of his sister with or without autism.  I do not believe that a person's personality is defined by or tied to autism.  I believe that life experiences related to autism can certainly change our personality - more patient, more angry, more loving, more skeptical, more cynical etc. but the base of who we are is untouched by autism and it's always our choice as to how we let autism impact that core of ourselves.  To me a cure for autism means removing all the things that block my son from sharing himself with the world and as he is a wonderful person, it's impossible for me to do anything other than want that. 






Basherte
by Silver Member on Mar. 25, 2013 at 7:47 AM

Okay thanks. I'll let him know. He will definitely look that up. 

He's been such a help. He told me that if I ever have any questions and want to know from a source that I can ask him anything. I have taken him up on that offer. :) He's been amazing. There have been times when he knows that I'm feeling a little well ready to do battle, and heads it off. By telling the other people to back off. :) Sometimes he's so right there that it feels like he knows me better than my husband knows me.  He is the first to state that he has no empathy though. So he has to be getting it from my type.. my speech pattern.

Quoting drpatriot:

I cant put links in these things but Wrong Planet has a thread on caffeine and autism. I live with my parents who more or less support my caffeine habit. Have him google it and there are some blogs like Caffiene Autism Mom that can explain that it could be a better than typical medications for treatment. 

Quoting Basherte:

He's on a fixed income. So he does it more for the cost. Keeping it low. But I'll let him know. Do you have a link that I could show him? He prefers to have back up. 

Quoting drpatriot:

Tell your caffinated Aspie friend that there has been a study that caffine is actually GOOD for us. I am an Aspie with a caffeen adiction and somebody posted a study on face book saying it is good for us.

Quoting Basherte:

Those 3 would be my complaints as well. I don't feel that there is a cure for autism. I don't think we should be wasting money or energy on that avenue. I think we should be spending money on education for those with autism, as well as those without it so that they can understand autism a lot better than they do. Most of the people that I talk to that don't know someone with autism seem to think that all autistic people are like the one in the movie "Rain Man" and that just isn't true.

I also think that people feel that if the person looks "normal" then any issues that that person has is something that can be taken care of by more discipline. That they don't have issues or problems. They are just acting out and displaying bad behavior that a swat on the butt could 'cure'.

I don't know that much about Autism Speaks. 

My son's one therapist recommended us watching Temple Grandin. I learned a lot from that movie. I also learned that it affects everyone differently. My DH sent Temple a note via the computer and got a response from her. She sent along some inspiration, and some advice. I was touched. 

I get a lot of support from this group, as well as another friend who has autism. He's around 30 right now. He was diagnosed later in life. I talk to him every day. Right now he is not drinking coffee for a week. (*giggles*) I couldn't do that. He is doing this so that he doesn't have to drink too much a day to get the same effect as what he normally gets from one cup. His only addiction is caffeine. I love his mind. I love him as a friend, as well, but I can't say it like that. 

Quoting MamaFrankie:

thank you so much for your detailed input. i certainly learned alot!

Quoting KatyTylersMom:

I like the amount of attention they bring to autism, I like their general message, and I think that for parents of young kids (which I am) they have a huge amount of articles and suggestions for anything from potty training to where to get help with insurance issues. 

From what I have read on blogs or articles where people are blasting Autism Speaks their objections are as follows: 

1) It's an organization devoted to autism with NO autistic people on their board or in positions of power.  This is a huge deal to the autistic community as they feel that without guidance and input from autistics, Autism Speaks cannot claim to represent the best interests of their community. 

2) Autism Speaks is openly in favor of finding a cure for autism.  Again, many autistics who are satisfied with their daily lives and happily pursuing their dreams find this offensive. 

3) Autism Speaks is mainly focused on helping young children with autism and the community feels that AS has ingored the needs of older kids and adults with autism who are facing a complete LACK of any community resources to help them once they age-out of the school system. 

Anyhow, those are the "big 3" of complaints and probably the source of 99% of the hate directed at AS.  I can't say as I fault people for wanting AS to focus on adults with autism AS MUCH AS they focus on the young kids, I feel that is completely fair and necessary especially now with 1/50 diagnosed and 1/50 soon to be adults needing help with life skills, living arrangements, jobs, transportation, etc.

I also think it's fair to want an autistic board member (or many board members) BUT I also feel like if you don't like what AS has to offer, you can be a board member of your own organization, and from what I saw when I watched a congressional meeting with many organizations including Autism Speaks and the CDC, there ARE many autism groups that are run by autistics and focus on different aspects of autism.  Now, they are not nearly so well known nor do they receive the funding that AS does so I can understand the frustration there. 

As for Autism Speaks wanting a cure and some members of the autism community vehemently disagreeing with that priority, I can only say that for myself the blogs and articles I have read have left me feeling very sad and angry towards the authors and their lack of empathy and perspective on being a parent of a severely impacted autistic child.  I'm not even speaking of myself here because my kids are able to function fairly well, either talk or are learning to talk, and are young such that they have many years of therapies ahead to hopefully get them into a position of being able to lead the lives they desire and choose for themselves.  BUT clearly there are so many people, children and adults, that are SO severely disabled by autism that will never be able to do so.  And it really angers me to hear or read arguments against a cure that start with "we are just different not better or worse and we don't need a cure" because NO ONE has the right to choose for others across the board like that.  Not us "NT" parents for our adult offspring be they NT or ASD, and certainly not an autistic person who is capable of fucntioning in the community, leading the life they choose and enjoy, and can communicate for an autistic person who does not, and cannot. 

I read a truly enjoyable book ("Ido in Autismland" for those interested) by a teenage boy (man really after his experiences) who finally gained access to facilitated communication, learned to use a letterboard and finally now an iPad to communicate and write.  He describes in detail the frustration of being an intact thinking, reasoning, and very smart person on the inside and a completely dysfunctional and often unpredictable person on the outside.  And he says that he would take the cure for autism in a hot minute.  So clearly the autistic community is not all of one mind on the issue of a cure and it should be left to the individual to decide if they want it or not.  And for individuals who are incapable of making their decisions known then it is left (as with everything else in their lives from housing to feeding to activities etc.) to their caregivers to make that decision. 

I find it completely fair to ask Autism Speaks to focus more effort on helping the autistics that are here NOW as opposed to spending money on the search for a cure, but I find it grossly unfair and unreasonable to deny that autism needs a cure or at least a solid *medical* treatment plan to complement and augment the years of therapies. 

Curing autism will not change the person my son is.  He will still be funny, naughty, silly, hilarious, sweet, snuggly, and completely in awe of his sister with or without autism.  I do not believe that a person's personality is defined by or tied to autism.  I believe that life experiences related to autism can certainly change our personality - more patient, more angry, more loving, more skeptical, more cynical etc. but the base of who we are is untouched by autism and it's always our choice as to how we let autism impact that core of ourselves.  To me a cure for autism means removing all the things that block my son from sharing himself with the world and as he is a wonderful person, it's impossible for me to do anything other than want that. 







CafeMom Tickers
lancet98
by Member on Mar. 25, 2013 at 7:58 AM

 

I'll make two basic points  

1. no one has a rignt to interfere with sollid, well designed basic research that leads to better understanding of the brain's growth and development and will have an impact on multiple disorders (autism, schizophrenia,  bipolar, disintegrative disorders, developmental delays).   No one has a right to decide for ANOTHER person what treatment THEY can choose by preventing research.   In other words, 'I don't want to be cured' shouldn't become, 'I'll prevent basic research and prevent others from choosing differently from me'.  Those mildly affected individuals living comfortably in the community can't make decisions for much more severely affected individuals'  families.  

2. HOW REALISTIC IS IT, ACTUALLY, to 'search for a cure to autism'?????   This is a BIG ISSUE!

Quoting MamaFrankie:

I came across a blog via tumblr [another blog LOL]

http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html

And I was a little taken back. My son was dignosed a year ago Feb. 2012 and I found Autism Speaks helpful even did the walk.

 For many parents activism helps them feel better.   It can be a healthy part of adjusting to a loved one having a disorder that affects the whole family's life.

But in the past few months I have come across quite a numberous amount of people / blogs that dislike them. I guess it's the "cure for autism" thing I am not sure exactly.

I am uncomfortable with the organization because I think they are going in too many different directions in an effort to draw members, that and because I'm just not sure what they actually DO!   Other than hold walks and ask for donations!   

I'm also uncomfortable with the 'cure' idea - but I'm uncomfortable with BOTH sides of the 'cure' argument!!!

For one, for a mildly affected person who is happy and comfortable in the community, I think that's great that they 'don't want to be cured', but it isn't up to them to stop research because there are so many very severely affected individuals who are unable to talk, toilet, and protect themselves.   I'm not at all 'comfortable' about being autistic when I am looking at bruises on a   sexually abused adult in a locked facility!

Like with any medical treatment, an autistic individual can say, 'I don't want to be cured' if a cure does exist some day.   And until they're the age of consent hopefully their parents would listen if they said that - but til 18 it is the parent who has the responsibility to make a decision about what care a child of theirs gets.

I'd also be cautious in interpreting 'I don't want to be cured'.   Does it really mean we should stop all research?   In some individuals I think it represents a lack of insight.   In SOME - I think it is due to frustration with a world they don't quite understand, even if they're rather well adjusted - like the adult who complained about their therapist encouraging them to 'make friends'.  

   In OTHERS -   - I think it is a feeling that they are not fully accepted or allowed enough independence and freedom as adults.   Some of it may just be a frustration with rules and social conventions they don't quite understand.

Even those ppl with mild autism have had care costs millions and have had a profound effect on their family's lives - and it's obvious that this disorder when severe can cause a great deal of heartache AND financial hardship.

Too, I think many 'don't cure me' autistic people don't themselves realize, how hard so many people have worked to get them where they are.   To me it's something like saying 'I don't want my broken leg set, but I want you to wait on me 24/7 while I lay in bed'.  

And it's a slippery slope - I am VERY concerned that autistic people who don't quite realize the effect their disorder has on the rest of the family and community, might refuse ANY help of any kind(you'd be amazed at how fast 'I don't want to be cured' turns into 'I don't want to be treated or get any therapy at all'), and that I think is a big mistake.

But my main concern is that independently living, mildly autistic adults who say they don't want a 'cure' have the potential of making things VERY bad for severely affected people if they actually PREVENT any and all research that MIGHT lead to a cure.

Too, because autism has many features in common with other disorders, they could actually affect research that would improve things for many OTHER disorders - bipolar, schizophrenia, etc.

I prefer basic research to continue, and each individual (or their parents, for children) to decide which treatments their child should get.   I don't want to shut down the search for knowledge.

But how do you feel about the Group Autism Speaks. I guess because I'm still a "newbie" to this DX, I can be a little ignorant to the different views so please forgive me If I offended you in anyway.

Ok, thanks.

But at the same time - I am not so sure all this talk of 'cures' by these organizations (autism speaks isn't the ONLY one!) really makes any sense at all!

I look at it this way.  

I'd really question the idea of a cure! YUP!

I feel a lot of this 'search for the cure' is actually really unfair to parents and a way of playing on their deepest fears and hopes and getting them to pay dues in largely "self-perpetuating" organizations(implication being that all they do is perpetuate themselves).

Similarly, any organization that supports the 'everything causes autism', the 'autism epidemic' and the 'vaccine cause', really needs to have their funding jerked out from under them. When an organization wants to be everything to everyone (interpret as 'financially successful') they often say 'yeah, sure, right, we'll support that, just join us' and I don't think that helps anyone - ever.

I have studied autism and the mechanisms that cause it for over 40 years now, and I think 'cure' is just a little bit crazy - asking for money 'to help us find the cure' is even crazier when that organization isn't really supporting research. If they are contributing to research well and good, but how much and to which researchers? Are they allowing businesses to promote their unproven products to 'cure' or 'prevent' autism? Are they telling parents to avoid vaccines? Then they are not helping anyone but themselves.

Now prevention - that is a possibility, but it presents huge hurdles and includes a lot of ifs. We need far more basic research on genes before we can conceive of a preventative. But since a preventative would need to be delivered to a fetus within the first few hours and days if its existence, even just delivering that preventative represents big hurdles.

It's conceivable to deliver a prevention later in fetal development but any prevention would have to have a healing effect on brain development - that has to happen early on in fetal development.

How would we develop a prevention? Again, first we need far, far more basic research on how genes and their products affect brain growth and development in early life.

 

PS the link to blog is NOT my blog. Just one I came across

 

 

lancet98
by Member on Mar. 25, 2013 at 8:45 AM
1 mom liked this

 

 

Quoting KatyTylersMom:

I like the amount of attention they bring to autism, I like their general message, and I think that for parents of young kids (which I am) they have a huge amount of articles and suggestions for anything from potty training to where to get help with insurance issues. 

From what I have read on blogs or articles where people are blasting Autism Speaks their objections are as follows: 

1) It's an organization devoted to autism with NO autistic people on their board or in positions of power.  This is a huge deal to the autistic community as they feel that without guidance and input from autistics, Autism Speaks cannot claim to represent the best interests of their community. 

Even mental health boards in county agencies have consumers and community members serving in board positions.   There isn't an excuse for this.  

On the other hand, there are practical problems with doing this, and people need to recognize that.   Not every person w autism is a Temple Grandin and not every idea every autistic person has is one to be acted on.  For example, one of my high functioning teens hated seeing people in wheelchairs and made repeated  complaints about them being allowed to come to school!  Let's not over-romanticize people with autism.  

Most people who serve on boards for ANY such agency or organization are very high functioning (no matter what disorder they have) and some have a wealth of insight and perspective.   That's a complex issue - people can still complain.   They can complain that high functioning ppl don't understand the problems of the more severely disabled, or that they are backing the wrong proposals, or any number of possible complaints...

But let's face it, many of these organizations really are for parents, not the individuals themselves.  

2) Autism Speaks is openly in favor of finding a cure for autism.  Again, many autistics who are satisfied with their daily lives and happily pursuing their dreams find this offensive. 

I only find it offensive to a point - that point is that they can't decide that for OTHERS!   Not everyone is going to say 'I don't want to be cured'.   I've met people with autism who would want to be totally rid of it.   Completely.   Not everyone is happy with it!!  I suppose this is more understandable when someone is severely disabled and their family is sad because they can't do a lot of things. 

But yes, I've met high functioning folks who are quite sick of having autism - one of my folks even thought hitting his head would cure him, and he wanted so badly to be cured that he jumped off a balcony - and fatally injured himself.   Others I've met are totally sick of this idea that autism is somehow satisfying and good - they just are not seeing it that way.   As one high functioning teen told me, 'All I want is to rid me of this thing'.

3) Autism Speaks is mainly focused on helping young children with autism and the community feels that AS has ingored the needs of older kids and adults with autism who are facing a complete LACK of any community resources to help them once they age-out of the school system. 

As Madeline Kahn said in 'Young Frankenstein'  - 'what is it exactly that you DO do, dear?'   And I'm not sure what they DO do...LOL.   They publish a lot of what OTHERS 'DO do', but what do THEY do?

Anyhow, those are the "big 3" of complaints and probably the source of 99% of the hate directed at AS.  I can't say as I fault people for wanting AS to focus on adults with autism AS MUCH AS they focus on the young kids, I feel that is completely fair and necessary especially now with 1/50 diagnosed and 1/50 soon to be adults needing help with life skills, living arrangements, jobs, transportation, etc.

There is a fairly huge yawning gap where adults are concerned.   There are some programs for higher functioning adults - then....it falls off pretty dramatically.   I know parents who are full of trepidation facing the future of their adult autistic children.

I also think it's fair to want an autistic board member (or many board members) BUT I also feel like if you don't like what AS has to offer, you can be a board member of your own organization, and from what I saw when I watched a congressional meeting with many organizations including Autism Speaks and the CDC, there ARE many autism groups that are run by autistics and focus on different aspects of autism.  Now, they are not nearly so well known nor do they receive the funding that AS does so I can understand the frustration there. 

Those organizations are interesting and often the source of a lot of valuable local activism.

As for Autism Speaks wanting a cure and some members of the autism community vehemently disagreeing with that priority, I can only say that for myself the blogs and articles I have read have left me feeling very sad and angry towards the authors and their lack of empathy and perspective on being a parent of a severely impacted autistic child.  I'm not even speaking of myself here because my kids are able to function fairly well, either talk or are learning to talk, and are young such that they have many years of therapies ahead to hopefully get them into a position of being able to lead the lives they desire and choose for themselves.  BUT clearly there are so many people, children and adults, that are SO severely disabled by autism that will never be able to do so.  And it really angers me to hear or read arguments against a cure that start with "we are just different not better or worse and we don't need a cure" because NO ONE has the right to choose for others across the board like that.  Not us "NT" parents for our adult offspring be they NT or ASD, and certainly not an autistic person who is capable of fucntioning in the community, leading the life they choose and enjoy, and can communicate for an autistic person who does not, and cannot. 

Exactly.   Nor do they speak for the higher functioning ppl with autism who WANT to be cured.  

I read a truly enjoyable book ("Ido in Autismland" for those interested) by a teenage boy (man really after his experiences) who finally gained access to facilitated communication, learned to use a letterboard and finally now an iPad to communicate and write.  He describes in detail the frustration of being an intact thinking, reasoning, and very smart person on the inside and a completely dysfunctional and often unpredictable person on the outside.  And he says that he would take the cure for autism in a hot minute.  So clearly the autistic community is not all of one mind on the issue of a cure and it should be left to the individual to decide if they want it or not.  And for individuals who are incapable of making their decisions known then it is left (as with everything else in their lives from housing to feeding to activities etc.) to their caregivers to make that decision. 

Exactly.   Though I'm not a believer in facilitated communication, I'm in agreement with the rest of that paragraph.

I find it completely fair to ask Autism Speaks to focus more effort on helping the autistics that are here NOW as opposed to spending money on the search for a cure, but I find it grossly unfair and unreasonable to deny that autism needs a cure or at least a solid *medical* treatment plan to complement and augment the years of therapies. 

Same here.

Curing autism will not change the person my son is.  He will still be funny, naughty, silly, hilarious, sweet, snuggly, and completely in awe of his sister with or without autism.  I do not believe that a person's personality is defined by or tied to autism.  I believe that life experiences related to autism can certainly change our personality - more patient, more angry, more loving, more skeptical, more cynical etc. but the base of who we are is untouched by autism and it's always our choice as to how we let autism impact that core of ourselves.  To me a cure for autism means removing all the things that block my son from sharing himself with the world and as he is a wonderful person, it's impossible for me to do anything other than want that. 

I think since a cure would require us to know so much more about the brain and how it grows and develops, that such knowledge would affect other disorders too - schizophrenia, bipolar, ANYTHING that is rooted in brain growth and development.   And many people would like to be 'cured' of those other disorders.

That said, as I noted elsewhere, I believe a 'cure' is a very, very difficult thing to create for autism.   You're essentially saying, 'You're short, I'll make you tall', when for the time being, I think 'let's learn how you can have a good quality life while being short'.  

A big issue is self determination and independence.   That's an issue in many disorders, not just autism.   People often make decisions for the disabled adult, insisting 'this is best for you'.   For example, years ago a young man with autism asked me out on a date.    His day program teacher actually took him aside and lectured him about 'sticking to his own kind' and how that was 'better for him' because an autistic girl 'would understand him better'.   He said, 'you think because I am autistic you should tell me who to like?'   This is an issue in just about every disability.

I don't agree with allowing a disabled person to make a choice that would harm him - like a schizophrenic person refusing medication, and then wandering into traffic or freezing to death outdoors because there are scary hallucinations in his apartment.   But there's a point at which we have to let go - when people are making choices about how they want to spend their time, how they want to live, who they want as friends, what church they go to, etc.

As a parent told me, 'my son just does not see why he should have friends.   He cleans his room, he goes to work, he goes to day program, he isn't interested in making any friends.   And it's not my business to decide how many friends he should have'.   There's a point at which we have to allow adults to make decisions, even if they aren't the same decisions we'd make.

I can't think of a better analogy than being short...sorry...LOL.  It's a limited analogy, but to take it far further than I should, we HAVE, in fact, many tools to help people with autism - the bulk of that being not quack 'cures' and 'miracle fixes' but good old fashioned work - education, teaching, repetition, very simple, ordinary 'little things', all of which add up to be 'big things'.

 

JTMOM422
by Brenda on Mar. 25, 2013 at 9:01 AM
1 mom liked this

I find the information useful and easy to use. I found 100 days after diagnoses download helpful. I recommend it to new moms on here. Like you I am still a newbie at all this. I read bits here and there. I have heard of the negative remarks towards Autism Speaks. I don't know why those remarks are out there cause I have never taken the opportunity to read them. I am sure the reasons are valid. I just think that a group that can get Autism out there has to be pretty good.  I do know that they don't have any people with Autism on there boards and that is something that I wish they would change. I think you have to look at any group out there though. There is always going to be another group that doesn't care for them.

Cassidysmom611
by Bronze Member on Mar. 25, 2013 at 12:20 PM

Personally, I really like them and respect them as an organization. I went to the Boston walk last year and I am already looking forward to next year.


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