A couple different things today.
1) On News-Dump day (Friday night is the time to dump news you don’t want carried too far; see this) The CDC revised their Autism statistics from the “1 in 150″ to “1 in 100 to 1 in 300 with an average of 1 in 150″ Americans. This reflects the wider use and acceptance of the diagnosis. (link, Note: the writer is very curebie.)
2) New Study suggests that Analytic thinking isn’t significantly impared in Autistics, compared to developmentally normal age-peers.
[I]n the new study, kids with autism discerned the overall context of visual scenes and relationships within those scenes, Morsanyi says.
“This finding is quite important and adds to the growing body of evidence that cognitive deficits in autism are not yet properly defined,” remarks psychologist Laurent Mottron of Hôpital Rivière-des-Prairies in Montreal.
Which was important to me because of how I learned to comprehend similes and metaphor- via Analogy.
The timing of the recent hullabaloo/AutismSpeaks Fail is amusing to me. Why?
Because the latest Rethinking Autism video is Out!
“Speaking for Myself” features the voices of actual Autistics providing voice overs. I am the Savannah that Speaks twice in the video- once at “Celebrate Neurodiversity” and again at “Why shouldn’t I have a say in laws, organizations, and research that involves me?” Also featured are Dora Raymaker, Steven Kapp*, and David Mahaffey*. The Captioning file was contributed to the wonderful Codeman38. We would have been able to participate in the filming but there really wasn’t money for that.
Rethinking Autism is maybe better known for some of their more Risque (read: actress in revealing garments) videos encouraging people to look at the research. Included are topics on No Vaccine Link, Special Diets, Inclusive Education, and Neurodiversity. Rethinking Autism attempts to comment not only on these issues but also on how celebrity and sex appeal is used to spread misinformation. In their Key Concepts page they give a run down on common misconceptions and direct people to sites containing more information.
On a related subject, Cat in a Dog’s World has an excellent post on the Diagnostic Double Standard in the Autism conversation. Those of us that are closer to the “passing” end of the spectrum are included in the statistics used, but yet when we speak up, too often parents say that organizations like AutSpks “aren’t talking about” us. And by us they mean not only those of us who can almost pass, or even those of us who can verbalize, they also mean “those on the internet”.
There’s an assumption that if you can use the internet, you aren’t “Autistic Enough”. Now, All that says to me is how much of a lack of hope or vision in the parents that think this. Drew Goldsmith, a talented young director who has been featured at film Festivals, is Nonverbal. Dora uses AAC devices to communicate. Carly Fleischman Approached her computer and began to type, and has revealed her life even though for years she was brushed off as “mentally deficient.” The assumption that if an Autistic is on the internet they are less “severe” is bogus.
* Steven and David, or anyone who is better acquainted with either of them, could you give me a link for you?
ETA: This is a personal note: My biological father watched the video. Now, I’ve mentioned he’s always been a little uncomfortable with the MH DD thing, but has become supportive. He watched the Video, and sent me a text message. “Loved the video. You spoke very well. Love Girl.”
I went to my grandmother’s for a few days (also: caught a ride to my blood work appointment) and the timing for that was SO not right. But I think I needed it (as it’s too early to see results for a new med) as I’m feeling a lot better and more prepared to do something other than sluggishly struggle to fit thing together.
A lot has happened since I went to Grandmother’s.
A good and comprehensive round up can be found on Liz’s I Speak of Dreams. Please contribute to her round up if you have anything! Also, my friend C1audia has an open letter on her blog that Is a good read. (C1audia is awesome, and I recommend you give her whole blog a look. )
I don’t always agree with The New Republic’s style (I’m too bleeding heart), but I do agree with their latest post- and am tickled by what it has to say. First of all, A parody called “I Am Autism Speaks” was put on youtube supported by them. Here it is:
It promptly knocked The AutSpks “I Am Autism” down in youtube ranking, and caused the PR firms to panic. They’ve been tracked on the New Republic site. In addition, Autism Speaks UK has choosen to disassociate itself in the following manner:
..’The UK charity Autism Speaks is a separate entity from the US charity of the same name. Autism Speaks UK did not contribute to the making of this video and we do not share or support the views expressed in it, which are those of certain members of the board of trustees of Autism Speaks in the USA’..
I’ll try to keep up to date on this matter.
(sometime later in the evening)
So, New Republic is currently the number one Search Result for Autism Speaks on Google Blogs. (you can either click on the above link or here for a screen cap.)
Time for some Positive information, I think.
According to a recent study in the UK by the NHS Centre, Autism rates in adults are about what they are in children. The NHS’s report can be read here.
NHS is The National Health System, and the Centre does a lot of statistic gathering and the like in order to support that system. The information gathered in this case backs up comments from various organizations as well as other studies that have suggested that Autistic Adults are underserved in the UK. In this study, Adults on Spectrum were just as likely as the general populace to received services.
A note: this study was conducted with the UK’s Adult Autism Strategy due out in 2010 in mind.
The conclusion in the news article is that since the rate seems constant and the MMR wasn’t introduced until the late 1990′s, it is further evidence against the Vaccine scare. I will note that there’s a lot of anti-Department of Health paranoia in the comments of the article, but those familiar with when this sort of information is published will also be familiar with those comments.
The NAS (National Autism Society) Seems pretty pleased about the whole thing, in any case.
I heard about this right before bed last night, and in the mean time the Autistic Community has made many valid points. Here’s the Run Down, and the Round Up
The Run Down
AutismSpeaks sent out a call for video submissions in a way that was fairly innocuous- in fact, it used language such as “a bright spot on Autism” that might indicate something positive and uplifting. You can see the call for submissions here.* This was for a United Nations-Autism Speaks conference.
Red flag number one (other than the fact that it’s an AutismSpeaks production) is the release forms.* This is for release of the footage parents submitted, and includes that the signer of the release is signing for friends and family as well as themselves. Now, I might have this wrong, but everytime I’ve worked with a photographer or with a non-profit who was taking photographs for publicity projects, if a release form was not signed by even ONE adult (or parent of a minor) depicted, the entire photo was a wash.
In this case, they might be safe as the clause does indicate that the signer is acting on behalf of everyone in the video, though it is phrased as the signer giving permission for the images of self, friends, and family. It does not say that by signing it they are saying that they have aquired permission and thus are acting on behalf of said friends and family. So even if a friend or family member did not give informed consent (if an adult, or parent, have read the release and consented to the signer acting on behalf of the party) it ends up being the signer’s fault and is sealed by this final phrase: “I further represent and warrant that I
have the right to give this consent and no other consents are required.”
Wording means everything in legalese.
The form also uses wording that would tip off some people, such as “global health crisis of autism” but perhaps not your general parent, particularly those of newly diagnosed children.
The actual video is. . . well, the only word I can think of is “appalling” and even “blatently Offensive.” (If you don’t think you can handle the video, the wonderful Codeman38 has transcribed it on the Livejournal Aspergers community.)
My response (in 500 chracters or less, as that’s Youtube’s character limit):
I find this video offensive, not only on behalf of myself, but also on behalf of my grandmother, an Aspergers Autistic, several Aunts, and even my cousin (Dx’d HFA, now Dx’d Aspergers due to early social supports and encouraging interests in sports as a family).
I am offended on behalf of my mother, whose love & pride & acceptance of ALL parts of who I am allowed me to progress even when instructors and Support Staff said I’d fail.
I am offended, & must say that AutSpks does NOT Speak for me.
I’d encourage you to go ahead to the site link and leave a comment and/or rate DOWN this video.
I’d like to additionally add that I’m disappointed in both Alfonso Cuaron and Billy Mann for their involvement in this. I have in the past admired Cuaron’s style, so this was even more of a disappointment for me. Shame on you both.
Community Response (Or the Round Up)
The community has had a huge response. Here are some responses (and feel free to link me to others!)
Cat in a Dog’s World has a fabulous response with some ethical questions and why we object.
ASAN has issued a press release on the matter.
ASAN of Northern VA has an analysis of the video worth reading.
The afore mentioned post by codeman38 in the Aspergers Community on LJ.
Kowalski has some parody suggestions!
LeftBrainRightBrain has several posts on the topic.
Asperger Square 8 Has some Counter-Advertisements.
Club 166 Comments on it extending the Ransom Notes hoopla.
DJ has written an excellent post that includes an “I Am AutismSpeaks” script.
Codeman38 has posted on his own blog.
-I left to visit the afore mentioned Grandmother, and it went on!
* I have saved these to my harddrive in case of site take down.