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What do people mean by the phrase "autism speaks"?

I've seen that particular phrase a lot on CM and was wondering.

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manderjane

Asked by manderjane at 12:03 PM on Oct. 14, 2009 in Kids' Health

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Answers (10)
  • This is straight from the Autism Speaks website:

    Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we've been able to accomplish and look forward to continued successes in the years ahead.
    Anonymous

    Answer by Anonymous at 12:25 PM on Oct. 14, 2009

  • There are no autistic members in any controlling position of Autism Speaks, only parents and other related family members. So I have several autistic friends who say why not let autistics speak for themselves like with the Autistic Self-Advocacy Network instead of having others speak for them.  As you can imagine, the divide between "Being Autistic" and "Putting Up with someone else's Autism" is a BIG difference, given how social slights and other communication issues are part and parcel of Autistic behavior, even though it doesn't have to be. As a result, with such lopsided representation, Autism Speaks can hardly presume to speak "for" Autism in any sense.  Many autistic people find the group offensive.

    Anonymous

    Answer by Anonymous at 5:07 PM on Oct. 14, 2009

  • AUtism Speaks is just ONE of the many autism support groups.
    Personally its not my fave one. I prefer www.generationrescue.com
    southernlamom

    Answer by southernlamom at 10:59 PM on Oct. 16, 2009

  • Personally its not my fave one. I prefer www.generationrescue.com


    Why Generation Rescue shouldn’t be on the IACC : The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.


    Is Generation Rescue Really an Autism Research Group?


    Stop Jenny McCarthy

    Anonymous

    Answer by Anonymous at 12:25 AM on Oct. 17, 2009

  • I enjoy discussion but not with people who are not behind their opinion enough to post as their real persona.

    I did not say I believe EVERYTHING Jenny says. But I have seen firsthand how ti works. I think its time everyone stop fighting and arguing and lets work together. I think many of Jenny's statements are very true. How can one say there is no connection between what we put in our body and our brains and development?

    As a mother of a child with autism I will look into jsut about ANY way i can to help mys on. Just seeing his improvement of one month of the GF diet, I am sold. Gluten is toxic to MY body as I have Celiac DIsease, why would I be surprised its toxic to his?

    http://louisianaceliac.blogspot.com
    southernlamom

    Answer by southernlamom at 12:43 PM on Oct. 17, 2009

  • No one is saying that there's no connection between what we put in our bodies and our physicial development.  What science is saying is that there is no link between vaccines and autism.  Autism is not a misdiagnosis for mercury poisoning (which is what GR was trying to claim when my friend's child was first diagnosised).  Addditionally, it's quite possible for a child with autism to have other problems like Celiac Disease.  But that doesn't mean treating the other problems will "cure" their autism.  Treating it may help them better handle therapies for autism - which is a good thing!  But touting a GF diet as a cure for autism is wrong.  I am a strong supporter of the autism community, I just don't think Autism Speaks and Generation Rescue necessarily are - I don't agree that their agendas.  People can make up their own minds about them though.

    Anonymous

    Answer by Anonymous at 1:58 PM on Oct. 17, 2009

  • I dont think there is any 'cure' for autism at the moment. I do feel that the GFCF diet, biomed interventions and removal of some toxins can help 'heal' the SYMPTOMS of autism. Just like Celiac Disease, you are never cured. I will always have Celiac. But the GF diet helps heal me and keeps me from having symptoms. Thats how I relate it to autism, same thing. My child has already shown progress on the diet even just in his language. His dev ped and his geneticist both agreed the diet would be a good idea given our history and in fact if he showed NO improvement they wanted to run more tests to make sure it wasnt a metabolic disorder. I personally think autism is a autoimmune neurological disease that we can treat the SYMPTOMS of. And I always figure, really what can it hurt to change a diet and try some more natural methods? But thats me, a little on the crunchy side. LOL
    southernlamom

    Answer by southernlamom at 4:57 PM on Oct. 17, 2009

  • I don't know if the GF diet is treating the symptoms of autism. It's probably treating a disorder like celiac which helps him better respond to life in general. Much easier for anyone to deal with things and focus on langague development if they're not having digestive problems (especially ones they can't communicate to others that they have). And I think that's an important distinction, because people do try to take advantage of parents with autistic kids getting them to do testing for toxins and "detoxifying" treatments that are unnecessary and in some cases harmful all in an effort to "cure" the child. And maybe the child doesn't need to be "cured" but accepted as having a different way of interacting with the world. And the focus should be at helping them do that the best they can and not make them something they're not.
    Anonymous

    Answer by Anonymous at 8:18 PM on Oct. 17, 2009

  • But I agree that to try a change in diet can't hurt. I do think that just because a child improves after a biomed treatment that doesn't mean the biomed treatment caused the improvement. People develop at different times and different ways and the improvement could have happened without the treatment. But on a whole, trying some "natural" things makes some sense - as long as it's done within reason. I work with my friend with some early interventions - speech therapy, play and behavioral interventions and they've been very helpful. Good luck.
    Anonymous

    Answer by Anonymous at 8:25 PM on Oct. 17, 2009

  • That is why I say that one day they may find that many children with autism have autism CAUSED by something. IE, untreated Celiac disease may cause symptoms that manifest as autism symptoms. I perseonally think there are underlying issues and that most kids can improve. Thats why my sons docs want to watch his diet...chances are possible that he actually isnt a 'true' autistic but thats how his body reacts to gluten. Either way, same therapies and diet are needed :)
    southernlamom

    Answer by southernlamom at 9:27 PM on Oct. 17, 2009

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