Comments on: D***d if We Do, and D***d if We Don’t http://www.blisstree.com/articles/dd-if-we-do-and-dd-if-we-dont/ Family, Health, Home and Lifestyles Tue, 22 Dec 2009 00:31:19 -0500 http://wordpress.org/?v=2.8.4 hourly 1 By: Phil Schwarz http://www.blisstree.com/articles/dd-if-we-do-and-dd-if-we-dont/comment-page-1/#comment-562340 Phil Schwarz Sun, 05 Oct 2008 05:39:22 +0000 http://www.autismvox.com/dd-if-we-do-and-dd-if-we-dont/#comment-562340 "And shouldn’t the discussion about autism be about autistic people, and centered round what autistic people themselves have to say...?" Exactly. Among autism organizations run mostly by nonautistic people, a few, like <a href="http://www.autcom.org">AutCom</a> and <a href="http://www.aane.org">AANE</a>, understand that, and <b>act upon it</b>. What needs to happen now is for those of us with the clout (or <a href="http://www.autistics.org/library/allies.html">collective clout</a>) to be heard, to get into the governance of the really big autism organizations, like ASA and Autism Speaks, and steer them firmly in that direction. “And shouldn’t the discussion about autism be about autistic people, and centered round what autistic people themselves have to say…?”

Exactly.

Among autism organizations run mostly by nonautistic people, a few, like AutCom and AANE, understand that, and act upon it.

What needs to happen now is for those of us with the clout (or collective clout) to be heard, to get into the governance of the really big autism organizations, like ASA and Autism Speaks, and steer them firmly in that direction.

]]> By: Marla http://www.blisstree.com/articles/dd-if-we-do-and-dd-if-we-dont/comment-page-1/#comment-561488 Marla Fri, 03 Oct 2008 20:22:33 +0000 http://www.autismvox.com/dd-if-we-do-and-dd-if-we-dont/#comment-561488 Did you hear about or watch the show on Dsicovery Health called Autism x 6? Talk about needing to work on using appropriate language. Ugh. Did you hear about or watch the show on Dsicovery Health called Autism x 6? Talk about needing to work on using appropriate language. Ugh.

]]> By: Science Blogs Book Club http://www.blisstree.com/articles/dd-if-we-do-and-dd-if-we-dont/comment-page-1/#comment-562164 Science Blogs Book Club Fri, 03 Oct 2008 15:35:48 +0000 http://www.autismvox.com/dd-if-we-do-and-dd-if-we-dont/#comment-562164 [...] (yesterday he noted that “anti-vaccine forces have taken the autism story hostage,” and I agree). Kev of Left Brain/Right Brain writes about how autism has become a secondary concern, Orac posts [...] [...] (yesterday he noted that “anti-vaccine forces have taken the autism story hostage,” and I agree). Kev of Left Brain/Right Brain writes about how autism has become a secondary concern, Orac posts [...]

]]> By: Kristina Chew, PhD http://www.blisstree.com/articles/dd-if-we-do-and-dd-if-we-dont/comment-page-1/#comment-559770 Kristina Chew, PhD Fri, 03 Oct 2008 13:11:18 +0000 http://www.autismvox.com/dd-if-we-do-and-dd-if-we-dont/#comment-559770 I was speaking to another colleague at my job about something else and autism came up and he mentioned he has a grand-nephew who's autistic----I steeled myself for the vaccine question; was relieved when he started talking about Early Intervention. I was speaking to another colleague at my job about something else and autism came up and he mentioned he has a grand-nephew who’s autistic—-I steeled myself for the vaccine question; was relieved when he started talking about Early Intervention.

]]> By: Kimberly http://www.blisstree.com/articles/dd-if-we-do-and-dd-if-we-dont/comment-page-1/#comment-559767 Kimberly Fri, 03 Oct 2008 10:41:38 +0000 http://www.autismvox.com/dd-if-we-do-and-dd-if-we-dont/#comment-559767 So true--it seems as though every time I tell someone new about my son's diagnosis one of the first questions they ask (if they ask one) is whether or not I think vaccines harmed him. I try to answer patiently, but I have to admit that it's becoming tiresome--and I am guiltily avoiding an autism walk in my community next weekend because I'm annoyed at the way autism has been portrayed in the media lately. So true–it seems as though every time I tell someone new about my son’s diagnosis one of the first questions they ask (if they ask one) is whether or not I think vaccines harmed him. I try to answer patiently, but I have to admit that it’s becoming tiresome–and I am guiltily avoiding an autism walk in my community next weekend because I’m annoyed at the way autism has been portrayed in the media lately.

]]> By: Kristina Chew, PhD http://www.blisstree.com/articles/dd-if-we-do-and-dd-if-we-dont/comment-page-1/#comment-559705 Kristina Chew, PhD Fri, 03 Oct 2008 02:55:56 +0000 http://www.autismvox.com/dd-if-we-do-and-dd-if-we-dont/#comment-559705 "Necessary evil" is a good way to put it. Though for myself, I think it's necessary to be careful not to be too reactive and to do more than respond to the latest salvos of the the anti-vaccine-ists---to be positive and not only negative. bickering (of small red guys and others) does have its uses.... “Necessary evil” is a good way to put it. Though for myself, I think it’s necessary to be careful not to be too reactive and to do more than respond to the latest salvos of the the anti-vaccine-ists—to be positive and not only negative.

bickering (of small red guys and others) does have its uses….

]]> By: M http://www.blisstree.com/articles/dd-if-we-do-and-dd-if-we-dont/comment-page-1/#comment-558532 M Fri, 03 Oct 2008 00:46:24 +0000 http://www.autismvox.com/dd-if-we-do-and-dd-if-we-dont/#comment-558532 "autism has become a secondary concern" Playing devil's advocate: the anti-vaccine crowd knows how to grab headlines. So...they need to be countered. If people ignore the Kirby's of the world...they'll hold court for an even longer period of time and endlessly drown out the more important stories. They'll grab headlines and continue to do so until someone speaks out against them. So...the back and forth is a diversion from what matters most...but it makes the long-term picture much more hopeful. It's sort of a necessary evil that hurts in the short-term, but preserves the possibility of a more balanced, relevant discussion down the road. (to play devil's opponent: people have autism now, not just in the "long-term"...so the stories should be receiving priority now; frustration ensues.) some people get a devil on one shoulder, an angel on the other. i pretty sure that I have two little red guys bickering with one another. “autism has become a secondary concern”

Playing devil’s advocate: the anti-vaccine crowd knows how to grab headlines. So…they need to be countered. If people ignore the Kirby’s of the world…they’ll hold court for an even longer period of time and endlessly drown out the more important stories. They’ll grab headlines and continue to do so until someone speaks out against them. So…the back and forth is a diversion from what matters most…but it makes the long-term picture much more hopeful. It’s sort of a necessary evil that hurts in the short-term, but preserves the possibility of a more balanced, relevant discussion down the road.

(to play devil’s opponent: people have autism now, not just in the “long-term”…so the stories should be receiving priority now; frustration ensues.)

some people get a devil on one shoulder, an angel on the other. i pretty sure that I have two little red guys bickering with one another.

]]> By: Regan http://www.blisstree.com/articles/dd-if-we-do-and-dd-if-we-dont/comment-page-1/#comment-556073 Regan Thu, 02 Oct 2008 23:45:01 +0000 http://www.autismvox.com/dd-if-we-do-and-dd-if-we-dont/#comment-556073 I know. There's a feeling of like, "oh yeah, autism, right" tacked on as an afterthought--the only thing distinguishing the discussion from the flat out ant-vax websites. David Kirby has no stake in this at all, except to keep getting paid and to possibly be trying to scootch out with some kind of journalism career left. If you want to know how long he could keep at it, keep counting the ingredients in a vaccine vial, since Aluminum is up next in the batter's box. <i>to feel that much, if not most, of the discussion about vaccines and autism has strayed far away from talking about actual autistic people, like the boy who’s sitting across from me savoring fresh chunks of watermelon as I write this on a Thursday night: That boy lugged a whole quarter melon around a grocery store as we shopped, and slung the bag with the melon and a lot of other food items over his left shoulder with a grin because he was doing it on his own, and didn’t need my help.</i> Yeah, except for rare occasions, the talking points seem very far away from Eleanor as well. I know. There’s a feeling of like, “oh yeah, autism, right” tacked on as an afterthought–the only thing distinguishing the discussion from the flat out ant-vax websites.

David Kirby has no stake in this at all, except to keep getting paid and to possibly be trying to scootch out with some kind of journalism career left. If you want to know how long he could keep at it, keep counting the ingredients in a vaccine vial, since Aluminum is up next in the batter’s box.

to feel that much, if not most, of the discussion about vaccines and autism has strayed far away from talking about actual autistic people, like the boy who’s sitting across from me savoring fresh chunks of watermelon as I write this on a Thursday night: That boy lugged a whole quarter melon around a grocery store as we shopped, and slung the bag with the melon and a lot of other food items over his left shoulder with a grin because he was doing it on his own, and didn’t need my help.

Yeah, except for rare occasions, the talking points seem very far away from Eleanor as well.

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