Whose Planet Is It Anyway?

Wednesday, July 29, 2009

IACC Season Again

Otherwise known as the season when good patriotic folks go hunting for ignorant anti-autistic prejudice in the US government, armed (figuratively, of course) with everything from bows and arrows to Thelma's shotgun. For those who have been wondering, I am not an author of that blog, but it does crack me up.

The dates for IACC comments are not actually the same each year, or even in the same season. I still haven't figured out if the committee members are just hopelessly disorganized or if it's some nefarious plot to confuse the auties. Anyway, I've reposted the commenting notice below. As usual, I hope my readers will make it crystal-clear to the IACC that there will be Nothing About Us Without Us.



On behalf of the Interagency Autism Coordinating Committee (IACC), the National Institute of Mental Health is seeking comments to inform the annual update of the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research, as required by the Combating Autism Act of 2006 (P.L. 109-416).

The purpose of this RFI is to solicit input from ASD stakeholders to inform the next update of the Strategic Plan. In the RFI form, there will be an opportunity to provide input on each section of the IACC Strategic Plan. Please include suggestions regarding missing or underrepresented knowledge areas, new opportunities needed for advancing research and knowledge about ASD, and suggestions for prioritizing research objectives.

The RFI will close on August 21, 2009.

Responses must be submitted electronically via the
web-based form.

Background:

The IACC was established as a result of The Combating Autism Act. The act requires that the IACC develop a strategic plan for autism research and update the strategic plan annually. The IACC is composed of both Federal and public members. The first IACC Strategic Plan for ASD Research was developed through an extensive process engaging a wide range of Federal agencies and public stakeholders. The Strategic Plan is organized around six questions that are important for people with ASD and their families:

I. When should I be concerned?
II. How can I understand what is happening?
III. What caused this to happen and can this be prevented?
IV. Which treatments and interventions will help?
V. Where can I turn for services?
VI. What does the future hold?

Please Note: The responses that you provide will become part of the public record. You have the option of posting your responses anonymously or you may choose to have your name associated with your response. In your responses, please do not include personally identifiable information that you do not wish to make public.

For more information about the IACC, please visit www.iacc.hhs.gov.

Now follow the IACC on Twitter (www.twitter.com/IACC_Autism).

Contact Information:

Attention: RFI on Updating the Strategic Plan for ASD Research
Office of Autism Research Coordination
Office of the Director
National Institute of Mental Health
6001 Executive Boulevard, Room 8235, MSC 9669
Bethesda, MD 20892-9669
Email: iacc@mail.nih.gov

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20 Comments:

  • Well looks like I better fill this out...

    By Blogger NightStorm The Aspiewolf, at 11:06 AM  

  • I hope a lot of people take the time to respond to the IACC. Even if it is a short response. Those who are loudest often get heard.

    My personal pet projects are more research (basic and applied) into adults with autism. These projects are low on the funding ladder (about 5% of the total).

    By Blogger Sullivan, at 2:08 PM  

  • Adults with Autism Mr Sullivan?

    Really?

    With the groove and surfing the roof of the groove, back in the shack of a soul boast - nah not going there, where are you coming from?

    We are not 'with' we 'are', we are, we will be, we were, we will endure perdurabo.

    I sometimes think even our allies patronise us, insult us, degrade us.

    Take away the lable I am still me, I will ever be me, I have fought to be me, I have been abused to destroy me, but I am, I will be, I am not anybodys fucking toy.

    By Blogger laurentius rex, at 5:11 PM  

  • laurentius rex,

    sorry about that one.

    By Blogger Sullivan, at 7:00 PM  

  • I'm pretty sure that was an innocent mistake on Sullivan's part, Larry.

    By Blogger Ari Ne'eman, at 11:37 AM  

  • Ari Ne'eman said "I'm pretty sure that was an innocent mistake on Sullivan's part, Larry."
    Sure, that might have been an innocent mistake, but it's a pretty harmful one that should be corrected.
    That kind of attitude may work well for dealing with my six-year old brother who thinks that my mom is fifteen, my dad is sixteen, and that I'm ten (really, my mom and dad are thirty-nine and I'm sixteen). It's easy to brush off the matter of him incorrectly guessing our ages because his thinking that his almost quadragenarian parents are in their teens and that his teenage sister is ten years old really isn't a big deal in the grand scheme of life.
    However, I am pretty sure that Sullivan is not six years old and can handle being corrected when he's wrong. Referring to autistic adults as "adults with autism" is a bigger issue than the ages of one's parents and older siblings. Referring to us as "people with autism" doesn't do anything except reinforce the viewpoint that the autism can be removed from us. As I explained it to a teacher at my brother's school a few months before, "My friend Amy is not a 'person with blackness.' She is a black person and you can't remove the fact that she's African-American. I feel the same way about referring to autistic people as being autistic rather than 'having autism' because you can't remove our autistic neurotypes no more than you can remove my friend Amy's African-American identity."

    By Anonymous Sadderbutwisergirl, at 12:25 PM  

  • Thelma appreciates the plug, abfh. I got my shotgun and birdshot ready if any fools come round lookin for trouble. Reckon my finger's atypin stands pretty good as a shotgun of sorts, as well.

    Now, listen, I found this conversation amongst the commenters mighty interestin' and wonder if a little bit of fillin' in could happen for Thelma since I'm fair new to the whole thin' going on with autism and such. I done me some studyin' up on what the APA done says about what they call people first language and being right careful not to be Offensive, ya know? So, no writin' stuff that might be stereotypin.

    So, they be sayin, it's children with autism and adults with autism and such. Now, from what I read out there on the interwebz, there are parents who think the autism is a tag on, whether cuz they thinkin the mercury or some such thing in a vaccine did it (damn fools, is what Thelma says) or because of some other reason, these parents see the autism is additional, not the child. Other parents seem right happy to embrace the child as the child is and work at helpin the child do the best the child can.

    Now, Thelma's also read a fair amount, and here I be thinkin of Mr. Jonathan and poor little Stephanie (god love her, she needs a big hug) who just ain't happy and see the autism as not them and somethin that's makin them pure-dee miserable like. And here there are folks who seem to embrace themselves and love themselves just fine. Call themselves autistic adults and don't mess around with no sense of political correctness, which Thelma is right fond of that attitude.

    So, what Thelma sees right off here is that no matter which way ya go, ya gonna piss off like three other sets of folks. Makes for right interestin times, if ya ask me and a damn sight more interestin' than global warmin and some of them damn fools on both sides of that equation.

    ABFH, gal, I done gone on so long, Thelma decided she'll make this a blog post at Dumbasses. Maybe set up a poll or somethin on the matter, cuz it seems to me there are dumbasses somewhere in there (I reckon that be that foresam ass, for sure, but I ain't right decided about Mr Jonathan. Sad sack, sure, but maybe some potential. I'll have to go adiggin some and hope ya'll help Thelma figure it all out.

    By Blogger Thelma, at 2:59 PM  

  • Sadderbutwisergirl,

    You're right. I'm sure Sullivan can handle himself and I didn't mean to imply that Larry shouldn't have been correcting him for the error. Having said that, I do think that it would be inaccurate to say that Sullivan is one of those supposed allies who "patronise us, insult us, degrade us" (they most certainly do exist - Bev has a great post on this topic: http://aspergersquare8.blogspot.com/2009/07/special-guest-visitor-t-rex.html ). I feel it's important we correct the innocent mistakes, condemn the faux allies for what they are and also be able to recognize the difference.

    By Blogger Ari Ne'eman, at 3:07 PM  

  • Thelma, here are some links to articles about person-first language as applied to autism:

    Person-First Language and Autism

    Why I Dislike Person-First Language

    Call Me Autistic

    By Blogger abfh, at 3:50 PM  

  • Thank ya, hun. Those were really interestin' to read. Sounds like some folks have their heads on right about the whole situation.

    Maybe with the right amount of love, compassion, and ass-kicking others'll feel better about themselves as well so they ain't distancin themselves from the way they are. It'd be like Thelma tryin to pretend she weren't a big ole gal with plenty to hold onto, and a personality that some find right hard to handle. Ya gotta own who ya are and celebrate it. Is what I'm sayin. And if it Offends some, well, we can say we're right sorry about that; it sure wasn't our intent.

    By Blogger Thelma, at 6:53 PM  

  • And Thelma, if you want to quote me on the subject, it's fine with me. I'm saying this because I've seen some examples of people being pissed off at other people for quoting them without their permission and I don't want you afraid of that happening. By the way, good luck on that post.

    By Anonymous Sadderbutwisergirl, at 7:09 PM  

  • Sadderbutwisergirl,

    I appreciate your permission, hun. I find all this right interesting. Better than watchin Mama Hazel with her internet gambling for sure, or reruns of Magnum PI. It sure matters a heap more.

    Thelma reckons there ain't no way to not Offend somebody, but I like it best when I'ma tryin for that, ya know, like when I'm callin out dumbasses.

    If'n ya'll embrace who ya are and want that recognized front and center, I reckon folks oughta respect that.

    Now, how's a gal supposed to handle it, though, if she's atalkin to those who hate that part of themselves, that's the question. Ya reckon that's some of the cause of the rift, some of ya'll appreciatin yourselves, happy enough in the lives ya done built yourselves, the communities ya done created for yourselves, while others with the same neurotype or close enough to be kissin cousins, hatin that bit of themselves and blaming it for all the wrong that done befallen em?

    How'n ya'll get around that group's hatred of all that is what they are? What ya are? So that ya'll can talk about fixin things up so that folks who ain't autistic can understand where ya comin from?

    Ain't that the question? Findin ways to some level of common ground so'n ya can make the world an easier place for folks that are different, whether they austistic or some other neurological difference?

    I mean, Thelma wouldn't wanna run outa dumbasses to call out, now, cuz, where would the fun be in that? But, seems ta me, those sadsacks who blamin their autism for all that ails em is missin the larger point. They the same ones insistin it ain't the main part of em. So, if it ain't who they are, then why is it to blame when things go wrong?

    We all complicated people with blessings and difficulties and for some reason, some of us got more difficulties, but it's a damn shame when those difficulties are caused not because of an actual factual problem of the person, but cuz society ain't awillin to do a little bendin.

    Listen, if it'll bend for that there Tom Cruise and for Britney Spears, it can bend for the rest of us as well.

    Thelma's wordy, I know. 'Preciate the listenin'.

    By Blogger Thelma, at 9:35 PM  

  • Mitchell's filled out the form. I've emailed the IACC warning them about him.

    By Blogger Timelord, at 5:18 AM  

  • I know. I read his blog and he announced it right there. Plus I read about how he insulted me. He insulted me in that post and linked to another post where he has insulted me. Pfft! And he says I'm 15! He can't even get his facts straight when insulting people. I'm actually 16.

    By Anonymous Sadderbutwisergirl, at 10:58 PM  

  • Sadderbutwisergirl,

    Would you consider joining our teens listserv? There hasn't been a lot of activity on it and we could use someone like yourself to jumpstart it: http://groups.yahoo.com/group/ASANTeens/

    By Blogger Ari Ne'eman, at 11:25 PM  

  • @Ari Ne-eman: I think the listserv looks great and I'd certainly join it. I just can't access my e-mail for the moment. It's really bugging me.

    By Anonymous Sadderbutwisergirl, at 12:48 AM  

  • I know. I read his blog and he announced it right there. Plus I read about how he insulted me. He insulted me in that post and linked to another post where he has insulted me. Pfft! And he says I'm 15! He can't even get his facts straight when insulting people. I'm actually 16.

    Funy how he claims that he doesn't insult people, unless they insult him first. He's very easy to upset isn't he? Especially when the truth is told. He finds the truth insulting!

    I'll have to catch up with my Mitchell's Gadfly blog. I've been neglecting that as of late.

    By Blogger Timelord, at 8:06 AM  

  • @Timelord: I read your Mitchell's gadfly blog and I wanted to respond to this post. I wanted to first off, tell you that I am the same Sadderbutwisergirl you mentioned in that post. Secondly, it's not really your lack of etiquette I oppose of as much as your substituting it for facts or overusing it. Anyways, the third item on my list is to tell you that new people can register now. You just have to do more stuff in order to register.

    By Anonymous Sadderbutwisergirl, at 12:56 PM  

  • Well, when I say something is fact, it's because I believe it to be so - and more importantly no one is able to prove me wrong in any substantial way (if you follow me there).

    Thanks for the note on the forum. Good idea to make people do more and hopefully it will send the bots packing. I don't have much time for anything extra at present but I'll keep the forum in mind when I have a chance.

    By Blogger Timelord, at 7:42 PM  

  • Shit.......we were on vacation and missed the deadline. Can we still attend the IACC thing on Oct 15th and make comments there?


    Athena from athenivanidx

    By OpenID athenivanidx, at 10:14 AM  

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