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Autism - Support Across the Spectrum Autism - Support Across the Spectrum
Do you support Autism Speaks?
Posted on the NEW CafeMom Mobile
by on Jan. 22, 2013 at 9:28 PM
Replies (11-20):
KatyTylersMom
by Silver Member on Jan. 23, 2013 at 6:06 PM
2 moms liked this

This exactly - whether you agree with their agenda of finding a 'cure' or not, they are getting the word "autism" into every last persons' vocabulary.  I watched the entirety of the 3 hour congressional pannel on autism and the representatives from autism speaks as well as other societies run by people WITH autism all spoke eloquently about the need for more services, help, support, post-high school jobs, training, and many other issues our kids face now or will face in the future. 

As a parent they are great for younger kids' needs and just for getting US, the "NT" parents, through the tough, confusing, scary, and overwhelming diagnosis process.  My kids are young, 2.5 and 4 so I'll have to see where they wind up in terms of their ability to function in society, have friends, excel or not in school, etc. but I have no bone to pick with Autism Speaks.  I understand the objection to having parents and grandparents speaking on your behalf when you, yourself are a very capable self-advocate, but I don't see the "evil" or "oppression" so often spoken about in conjuntion with Autism Speaks. 


Quoting MomOfOneCoolKid:

I personally love autismspeaks. They are the biggest most effective organization out there for autism.

They want to create a big tent for all voices, but some voices in the autism community really are very divided against each other. I see them as a middle of the road organization. I don't know which is left and which is right, but as I see it, on one end of the autism debate is the "neurodiversity" movement, in the middle is the treatment/accomodations/clinical/broad-based scientific community (ABA, floortime, medications, therapies, etc.), and on the other end is the biomedical intervention side (DAN docs, TACA, etc.)


Without autismspeaks, i don't think my child would have recieved the help that he so desperately needs. I don't think many people would even know the word "autism." Their presence and value is un-quantifiable. Its HUGE.


Without them the insurance mandates in the states wouldn't exist. Without them the provisions for mental health services would not exist in the current healthcare law. Without them, this world for my son would be very bleak.



Autiziumom
by Ana on Jan. 23, 2013 at 11:51 PM
They were my ABA agency. I absolutly support them.
NJMommaK
by on Jan. 24, 2013 at 10:11 AM
2 moms liked this

we also support Autism Speaks. We have walked in our local Walk now for the past 6 years. We dont raise much moneym as a team, but the experience of it all is amazing for my son. YAY GO  Matty's Marchers!! We have an amazing time, its nice to fit in with a crowd that totally understands a meltdown.

During Hurricane Sandy our local Walk Now  for Autism Speaks  reached out to us, as we are on the jersey shore, They offered us with resources and information on the help we as an autistic family can get Including medical help or shelter if needed. They were VERY helpful, more than our own town was.

marcie1455
by Member on Jan. 24, 2013 at 11:14 AM

I'm not sure what I feel about the organization.  I'm still straddling the fence.

CheriJ13
by Member on Jan. 24, 2013 at 12:05 PM

No I do not support them. I went to one walk and thought maybe we could "fit in" and meet some people, but almost everyone had a child who was high functioning, and that is what all the activities were geared for. I actually had people get up and move and shy away from us.With  a child who is not high functioning we were made to feel unwelcome, we were not the only family to feel this way. I was deeply hurt that my child was too Autistic to play- non verbal and loves to twirl circles, gets happy flappy. I see it as another organization with a clear agenda of taking donations to find a cure. I see more research to be done in better therapy, early diagnosis, diet etc to find a better way of life for these children when they grow up. I feel there is no cure for Autism but more to get them to a space of high functioning. If they were really for our children, then the commercials would change to show children with Autism, not sitting in a chair next to a celebrity(who has family effected),but doing what our special kids do best. 1 in 88 children have Autism, but most of the time people who are not affected have no idea really what Autism is about. People actually ask if my on has "the bad autism kind" really?!Spend more time not just on the 88 , bu on telling people what our familes and our chldren go through, so maybe the next time at the grocery store the staring and mumbled "bad mom" can stop. sorry, end rant :)

MomOfOneCoolKid
by Gold Member on Jan. 24, 2013 at 2:29 PM

 


Quoting CheriJ13:

No I do not support them. I went to one walk and thought maybe we could "fit in" and meet some people, but almost everyone had a child who was high functioning, and that is what all the activities were geared for. I actually had people get up and move and shy away from us.With  a child who is not high functioning we were made to feel unwelcome, we were not the only family to feel this way. I was deeply hurt that my child was too Autistic to play- non verbal and loves to twirl circles, gets happy flappy. I see it as another organization with a clear agenda of taking donations to find a cure. I see more research to be done in better therapy, early diagnosis, diet etc to find a better way of life for these children when they grow up. I feel there is no cure for Autism but more to get them to a space of high functioning. If they were really for our children, then the commercials would change to show children with Autism, not sitting in a chair next to a celebrity(who has family effected),but doing what our special kids do best. 1 in 88 children have Autism, but most of the time people who are not affected have no idea really what Autism is about. People actually ask if my on has "the bad autism kind" really?!Spend more time not just on the 88 , bu on telling people what our familes and our chldren go through, so maybe the next time at the grocery store the staring and mumbled "bad mom" can stop. sorry, end rant :)

I'm sorry you were made to feel that way. I'll see if I can find a number or an address where you can write this experience to AutismSpeaks. I know that if the board knew about your experiece, each and every single one of them would apologize.

 

Alma4Mom
by on Jan. 24, 2013 at 3:23 PM
1 mom liked this

I agree awareness is HUGE!  I have a team for a walk coming up in chicago I do not agree with some of the things they state about cures and all but I get the sense that they are starting to see the bigger picture! 


Quoting MomOfOneCoolKid:

I personally love autismspeaks. They are the biggest most effective organization out there for autism.

They want to create a big tent for all voices, but some voices in the autism community really are very divided against each other. I see them as a middle of the road organization. I don't know which is left and which is right, but as I see it, on one end of the autism debate is the "neurodiversity" movement, in the middle is the treatment/accomodations/clinical/broad-based scientific community (ABA, floortime, medications, therapies, etc.), and on the other end is the biomedical intervention side (DAN docs, TACA, etc.)

 

Without autismspeaks, i don't think my child would have recieved the help that he so desperately needs. I don't think many people would even know the word "autism." Their presence and value is un-quantifiable. Its HUGE.

 

Without them the insurance mandates in the states wouldn't exist. Without them the provisions for mental health services would not exist in the current healthcare law. Without them, this world for my son would be very bleak.


 

lasombrs
by Sara on Jan. 24, 2013 at 5:05 PM
1 mom liked this

they helped us after Hurrican Sandy and were the only place we were told about after ds was diagnoised. I havent seen anything bad from them.

Basherte
by Silver Member on Jan. 24, 2013 at 5:48 PM

I thought I was the only one. Seriously.

My son is on disability, but I feel bad when I tell people that there really isn't anything wrong with him. He's wired differently and has issues with social situations, and doesn't speak yet, but he isn't ill. He is different.

I get really upset with people that tell me that they are sorry about my son's diagnosis and hope that they will find a cure for him soon.


Quoting Bluerose1482:

Autism Speaks doesn't speak for me (or my child), and it doesn't reflect our opinion of my son's Asperger's.

However, I believe that there may be several conditions that exhibit autistic like behaviors.  Some of those conditions could be cureable.  I have no problem with them looking for a cure for people who feel like something else is going on and desire a cure.

As far my Aspie....He's not ill.  His brain wired is a little different than other people.  That's ok.  He has a right to be the person he is.  I would personally find any discussion of a 'cure' for him offensive. 


Paperfishies
by Member on Jan. 24, 2013 at 6:28 PM

Yup, I support them!

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