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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

How do you feel about Autism Speaks

Posted by on Mar. 22, 2013 at 12:21 PM
  • 48 Replies

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
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Replies (1-10):
TwilightMom815
by on Mar. 22, 2013 at 12:26 PM

I love autism speaks & supported them since my son got his dx. They give you so much hope and yes they get haters (who doesnt) mainly the high functioning kids dont want to be *cured*.

KatyTylersMom
by Silver Member on Mar. 22, 2013 at 2:19 PM
4 moms liked this

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. 

MamaFrankie
by on Mar. 22, 2013 at 2:34 PM

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. 


TheLadyAmalthea
by Bronze Member on Mar. 22, 2013 at 4:05 PM
3 moms liked this

I generally stay away from them. I will not donate my money to them. I do not participate in their walks. I do not agree with what they spend their money on and how much money their board people make. Not one person on their board has autism. The walk I do participate in is through the local autism society. They put the money back into the community, and their working staff aren't paid huge amounts of money. I also disagree with how AS pictures children with autism as victims and autism as something to be feared. I also don't agree with their view that autism needs to be cured. My son doesn't have a disease, his brain is just wired differently. Those are my personal reasons for not supporting AS.

lasombrs
by Sara on Mar. 22, 2013 at 4:08 PM

They helped my family after the huricanes. I do not have a problem with them

TheLadyAmalthea
by Bronze Member on Mar. 22, 2013 at 4:10 PM
3 moms liked this

I don't hate them, I just personally don't support them. I choose to support the local autism society where I live. My son is on the lower end of the autism spectrum. He is 5 and can barely talk, still isn't potty trained, and just started eating solid foods a few months ago. I do not seek a cure for my son, I seek out ways to work with him and help him navigate through a world that is hard for him to understand. I just view him as having a brain that is wired differently than us "normal" people. I'm not attacking you or anything like that, just sharing my own personal reasons, which I posted already above ;)

Quoting TwilightMom815:

I love autism speaks & supported them since my son got his dx. They give you so much hope and yes they get haters (who doesnt) mainly the high functioning kids dont want to be *cured*.


LauraT-H
by on Mar. 22, 2013 at 4:13 PM

I have veiwed the sight 1x, I though it ok. I need feed back and am still trying to figure things out faze. So the sigh was I foound for adults mostly not moms.

lady_katie
by Silver Member on Mar. 22, 2013 at 4:39 PM
1 mom liked this

I don't know the whole story (maybe someone can correct me if I'm wrong) but I'm fairly certain that they threatened to sue an autistic person who made a parody of their website, or something like that. I think that's a big part of the reason that a lot of people have negative feelings towards them. It's certainly made me feel a bit standoffish, even though they have a lot of resources. 

TheJerseyGirl
by Michele on Mar. 22, 2013 at 4:40 PM
1 mom liked this
I like ANYTHING that brings positive attention to autism!
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TwilightMom815
by on Mar. 22, 2013 at 4:48 PM
1 mom liked this

its fine. i don't seek a cure for mine either because in my heart there isn't one for already dignosed kids I just don't want to see other families go thru the torment that i did. I beleive in giving the best out of life for my son and he's in alot of therapy which has taken him from severely autistic and non verbal, to mild autism and speaking in sentences. I also support my autism society for where I live because they provide oppertuinities for children. Im not trying to offend im just tryin to explain my reasons. 

Quoting TheLadyAmalthea:

I don't hate them, I just personally don't support them. I choose to support the local autism society where I live. My son is on the lower end of the autism spectrum. He is 5 and can barely talk, still isn't potty trained, and just started eating solid foods a few months ago. I do not seek a cure for my son, I seek out ways to work with him and help him navigate through a world that is hard for him to understand. I just view him as having a brain that is wired differently than us "normal" people. I'm not attacking you or anything like that, just sharing my own personal reasons, which I posted already above ;)

Quoting TwilightMom815:

I love autism speaks & supported them since my son got his dx. They give you so much hope and yes they get haters (who doesnt) mainly the high functioning kids dont want to be *cured*.



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