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Ramblings of a Conuly - In Which I Watch the Video
Believing in six impossible things before breakfast
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In Which I Watch the Video
Oh, look. They have a place for people's responses to the video. It's not a messageboard or somesuch, of course - it's just the messages they choose to present. This would automatically make me suspicious about the upcoming video, if I weren't already.

1. HOLY HELL. THIRTEEN MINUTES? I don't know if I can take this much autism in my day....

2. It's a new decade for autism. Hm. They choose 2006 to start the new decade?

3. Geez, low quality really *is* low quality. Let's switch to high quality. Hold on....

4. I immediately have to wonder, as so many people did - how many hours did they film? Do we have confirmation that their kids are melting down every day? (Or at least every day they unexpectedly have cameras on them?) Not to say that children and adults *don't* have meltdowns - and boy are those unpleasant - but I do want to put that thought in this entry.

5. Now they specifically are blaming this "bad behaviour" (as the viewer is supposed to think of it until corrected, I assume) on autism. I'll take this moment to point out that *all* children will overload and have trouble like this, especially when they're under a lot of stress. Autistics are more prone to that sort of thing, but... believe me, all children can overload.

6. You can't take a day off with autism. A profound thought. You can't take a day off of parenting, period, or of simply living. The implication seems to be that one can take a day off of other things, and you really *can't*.

7. Okay. You tell the world your daughter is "like a baby" to her face, and complain that she always needs attention. At the same time, you can't even take a moment to respond to her comments about your feelings ("you crying?"). That's... that's as bad as it was described. Yes, it's exhausting to have somebody wholly dependent on you. But... geez, have a little consideration for your child's feelings!

8. Now we get to more matter-of-fact statements, which I will nevertheless pick apart.

Your kid used to take his clothes off all the time? How are you working on it? I hope you're working on it by finding clothing that's more acceptable to him. He didn't, as we know, take his clothes off just to spite you.

Your kid who can't be older than three or four has never spoken one word? Yeah, that's late. And it may be that he never does speak. I know people who don't speak. It may be that you never find a way to communicate with him, though speaking isn't the be all and end all of communication. But can you give him some time before you make final-sounding statements? Show us an older kid to pull on our sympathies. It's like they're not half-trying.

9. Segue on the diaper issue... Thank you. I'll hardly pretend it's pleasant to change diapers year... after year... after year... but it's one of those things that's not the end of the world.

10. The medication, constant medical appointments, even the constant therapists are not required by the mere fact that your kid is on the spectrum. We make our choices, of course, and we're all bound by conscience, and I'm not even saying that all of this is wrong... but let's not confuse "questforacure" with "autism did this"

11. Huh. Ana has that exact same striped shirt.

At this point, I notice that they're all mothers. Is this because women pull on our heartstrings more, or is it supposed to symbolically pull on our ideas of single motherhood and isolation? Or is it a coincidence?

12. Gee. My entire social life revolves around... um... the computer... and most of my friends are autistic. I don't see this as a bad thing.

I'm a little annoyed sometimes at how my real-world socialization is mostly the parents of Ana's friends - they're nice people, but mostly not people I'd be overly friendly with otherwise. I don't see us as having much in common. But I don't complain about it.

13. That kid in front of the red door looks mighty annoyed at being stuck in front of the red door that long. Of course, should he meltdown, all the better - it's good to show how difficult people's lives are.

14. Your heart is breaking all day long? Now, this is where I, had I not come here prejudiced, would give up hope of seeing a balanced video. A balanced video, for your information, is one where life with an autistic kid is shown in full - not just constant shots back and forth to meltdowns with melodramatic mamas talking about how life is hard. Life is hard for everyone, and when I hear people say how hard their life is, even when it no doubt *is* hard (and quite possibly harder than mine), I want to just yell at them to suck it up.

I've been reading a lot of the journals at autismhub lately. Lots of those people are parenting autistic kids. And from the way they describe it, their kids are great kids, just autistic. It's not a constant stream of you sitting around talking about how hard your life is. This is where I link to Autism Diva's post about how differently kids with Rett's syndrome and autistic kids tend to be described by parents.

15. Assumption: You believe your child is in a lot of pain. However, there is no comment or action from your child to confirm this. He may, indeed, be in a lot of pain. However, kid-in-front-of-red-door might also just be really bored with the camera by now and wanting to move on with his life.

16. Nice use of the puzzle piece. I'll choose to interpret that as autism is a puzzle, not autistics are a puzzle.

17. My mother describes a time I walked out onto a highway. *ponders* She's actually described that story a lot, lately. I wonder if she thinks I'm not watching Ana properly or something...?

18. Jypsy's son is now a successful runner, isn't he? I'll ask somebody who is more used to finding archived copies of her site. This is, actually, completely irrelevant to the actual fear these parents feel when their kid is about to die. Frankly, that fear is gratifying to me - I'd worried a bit that they mightn't be panicky over the prospect. Careless of me.

19. Too old for a pacifier... My mother also tells a story of visiting Belgium and meeting my cousin Pierrot, who was seven at the time, and being shocked to see him sitting on the kitchen floor sucking a bibi, and being called Pierrot (just a bit less childish than Peteykins, she says). As she puts it, it's not that he acted like a baby, it's that the family saw nothing wrong with him acting like a baby. My mother can be as judgmental as the next person.

I wonder whatever happened to him...?

20. I'd wonder why her mom is pushing her onto the swing in front of cameras and complaining that her daughter didn't like it.

It's not the meltdown that bothers me. It's the fact that her mom, as near as the video makes clear (and I could be mistaken) clearly started the whole thing.

21. Oh! Ana has that puzzle! And I don't see the point of making her, or any kid, sit down when they don't want to sit down unless it is urgently necessary. Or any adult, for that matter. I refuse to get bothered by that sort of thing.

22. Okay. First, the schools *should* be doing more for these kids. That's what the schools are for.

Secondly, twelve kids to one teacher is *not* "completely overcrowded". It's not ideal, I think, for a class of kids with special needs - but even then, it's not "completely overcrowded".

23. Here's the point where everybody screams. Let's break it down.

The autistic kid is in the room. The mother is smiling. And she's discussing that she thought about killing herself and her autistic daughter (no doubt it'd be called an "act of love" by doting family) who, need I remind you, is in the room. And she didn't, obviously, because she's on the video. Why didn't she?

Because she has another kid who, frankly, could live without her. I mean, I wouldn't wish that on any kid, but she wouldn't suffer that much with other family.

And she says this in front of her kid.

Her kid's got problems, all right, but not the kind that she'd like to believe. Hoo-boy.

24. Yeah, Lauren's statement is completely unscripted. And notice how she says it - "I wish I had a sister without autism". Not "I wish my sister weren't autistic". Kids are very direct, you know? She's gone right to the heart of the problem - she (influenced, as all children are, by her parents, though to what degree I can't say) doesn't want the sister she has, she wants one without autism.

Yeah, well, can't get that. It's not like you can leave the kid outside and the autism faeries will replace the damaged goods with your own sister back again.

25. And why is the divorce rate so high for families with autistic kids? Is it the autism? Is it related more to cultural attitudes regarding disability? Is it a combination?

I sure don't know. And they don't examine that, either.

26. Is it possible that these women felt they had to martyr themselves due to their kid's autism? Hey, I'm just throwing out ideas here. Once again, the lack of dads in this video makes itself apparent.

27. I concur. We need national medical coverage. It needs to cover this sort of thing - provided it's proven non-quackery, I'd say?

28. Adult autistics also can use help at various times. These things ought to be covered based on who needs what, not based on arbitrary classification of age or IQ tests or diagnostic categories you might not fit exactly. Getting back some of your sight, as one of my friends did recently, should *not* be a bad thing. People should get the services they need, based on the fact that they need them.

29. We don't have any money to fix anything either. And it's a crying shame, yes - but this video isn't about poverty every day (a subject which I believe could merit some attention).

30. Query: What are her criteria for "success"? What makes her continually disappointed? What does she expect to achieve from all this therapy? Because if it's "disappointing" her all the time, I think she may wish to reconsider her objectives before she tries her next bout of loans.

31. I agree. There ought to be good services for autistic kids and adults - their parents should not have everything on their shoulders.

This isn't autism. This is bad governance.

32. It's all up to her? Now, I thought (based on her comments) that she was married...? Isn't some of it up to him?

I'll fall hard on my martyr comment earlier.

33. They *really* like to focus on that kid stimming. I'll take a gander here and say that's because they couldn't get any good shots of him having a meltdown, so they went with his general "otherness" which is not, in fact, a bad thing - just different. But they can make a big deal out of it without ever saying a word.

34. Nothing has been taken from your son. I'm sorry he's not the son you wanted or expected. But he's a full and complete person just the way he is. Just not what you expected.

35. You do not know that your son will never get married and never have kids. Now, I had a good article I lost, just yesterday, about two brothers with Fragile X who, contrary to their parents' expectations, grew up, got an apartment of their own, go on dates....

Hey! And they're still not normal!

Kid's still a baby, you can't say what will happen when he's grown.

And even if he never does marry, never does have kids - that's not required for a happy, productive life.

36. Letting your kid grow up autistic is not "throwing them away". God. Now we get to happy music, designed to inspire the idea that cure = hope, and not having autistic kids at all = even more hope. Yippee.

37. At least we've also reached the section - no more than a minute long - where they point out that, yes, occasionally life isn't all tsuris, sometimes there's nachas in it as well.

38. I could kill this woman myself. I completely agree with everybody else. Her kid has been hugging her, kissing her, asking after her *all through the video*, but she'll only take it when her kid actually spouts the words "I love you"? How self-centered can you be?

39. Autism speaks: It's time to listen.

I dunno. Autistics have been speaking for a while, and nobody listens then.

But then, we're not all about the slick ad campaigns and tons of money, are we?

Apparently, this video was hand-presented to each member of Congress in order to get them to vote yes on the Combating Autism bill...

It's not the bill itself I'm opposed to, but the melodrama that's being used to get people to vote, and the overly warlike and propagandistic name of the bill.

So I've written to my representatives myself.

Should've thought to link to Getting the Truth Out. D'oh.

Tags: ,
I'm feeling: annoyed annoyed

Comments
rantinan From: rantinan Date: June 7th, 2006 05:39 am (UTC) (Clicky!)
I realy realy REALY dont want ot see it now.
conuly From: conuly Date: June 7th, 2006 05:43 am (UTC) (Clicky!)
The decent parts of it are still only what you'd expect (and managed to slant to blame the autism rather than poor services), and the bad parts are really fucking bad.
rantinan From: rantinan Date: June 7th, 2006 06:27 am (UTC) (Clicky!)
Meep.
YOU SWORE.

You know i cant actualy rememebr you swearing before.

ever.

Ok this is officaly on hte never to be watched, always to be hated list.
conuly From: conuly Date: June 7th, 2006 06:40 am (UTC) (Clicky!)
I know I've done so within the past month. Uh. 30 day period, I mean.
rantinan From: rantinan Date: June 7th, 2006 07:43 am (UTC) (Clicky!)
Perhaps. But it;s certinaly not like the air turns blue arorund you so when you use a swear word oyu realy meen it :)
deceptica From: deceptica Date: June 7th, 2006 10:47 am (UTC) (Clicky!)
I was also struck by how many things they presented as oh so sad were actually just part of normal parenting, such as the child not always wanting to do what you want it to do (He doesn't want to do the puzzle when you tell him to? Noes!) or screaming about random crap. When I was little I once screamed all the way home from kindergarten just because my mother didn't buy me the burger I wanted and she said it was embarrassing as hell. That's children for you.

I'm not saying that mothers of autistic children don't have it difficult, but that video mostly strikes me as overly melodramatic.
sporks5000 From: sporks5000 Date: June 7th, 2006 02:10 pm (UTC) (Clicky!)
"I really had to give up my entire life as I knew it."

Where as if she had given birth to a child who wasn't autistic, she could have just gone straight back to the way things were before?
ganas_de_ti From: ganas_de_ti Date: June 13th, 2006 02:01 am (UTC) (Clicky!)
she could have gone back to work after a while, could have hired babysitters for some nights, could go out with her friends occasionally. people with non-autistic children, after the child hits toddler ish age, can be put in day care or something. so yeah, i think there was nothing wrong with that statement

**of course if there were daycare in the area for children with special needs, the austic kids could be in it, but it seems there isn't**
From: (Anonymous) Date: June 13th, 2006 02:56 pm (UTC) (Clicky!)
"I really had to give up my entire life as I knew it."

[if the child had been NT] she could have gone back to work after a while, could have hired babysitters for some nights, could go out with her friends occasionally. people with non-autistic children, after the child hits toddler ish age, can be put in day care or something. so yeah, i think there was nothing wrong with that statement

The statement (quote from the movie) is perhaps not factually wrong, but betrays a false expectation of the state of being a parent: Some parents of autistic children *can* do some or all of these things. Some parents whose children are not autistic *cannot* do some or all of these things. *All* parents should expect to "give up [their] entire life as [they] knew it", for a minimum of 18 years per child.
sporks5000 From: sporks5000 Date: June 7th, 2006 02:21 pm (UTC) (Clicky!)
Oh my god! Children running away and not paying attention to traffic? That never happens to non-autistic children, and is certainly not the sort of thing that a parent of a non-autistic child would have to be concerned over.

I'm giving up on this video, Connie. It's making me want to stab things.
ksol1460 From: ksol1460 Date: June 10th, 2006 02:11 am (UTC) (Clicky!)

I've posted these observations elsewhere, but just for the record:

The cinematography. The lighting. Even the colors of the clothes they are wearing.

The background music, including the just-barely-audible tones, pitched at a frequency which imparts feelings of doom and despair.

The editing, as you pointed out, to show only the screams and howls, the alien-like behavior -- except for that poor little girl showing concern for her mother's feelings, something we've been schooled to believe no autistic child does without rigorous training, but which looked damned spontaneous to me -- and which we aren't supposed to notice because we've been told that everything she does is merely to get her mother's attention (as if that were some kind of a sin).

Oh yes, and what do you want to bet the mother told the crew "She doesn't like to be put on the swing, she likes to climb on by herself" so they told her "Pick her up and put her on the swing" so they could film her screaming.

The mother with her child standing in front of that DEAD END sign. The cut back to the mother in front of that same sign a few minutes later. (You're not supposed to notice this for what it is; it, like the background tones, is a subliminal.)

The sister, looking not at the camera but at someone offscreen who has obviously just told her what to say. Her recitative tone of voice as she repeats the line.

Conclusion: This thing ought to be nuked till it glows. Good night, and good luck.
conuly From: conuly Date: June 10th, 2006 04:02 am (UTC) (Clicky!)

Re: I've posted these observations elsewhere, but just for the record:

Thank you for being more concise than I was :)
ksol1460 From: ksol1460 Date: June 11th, 2006 07:03 pm (UTC) (Clicky!)

Re: I've posted these observations elsewhere, but just for the record:

I loved what you said. As a sometime media producer, I would put the kibosh on this thing even if I were not autistic. The combination of effects I described gives a horrible message to viewers. Even if you think autism is a tragic problem or illness, you do not want to convey that it is hopeless, that no answers exist at all, or that autistics exist in a perpetual state of meltdown.

The producers of this video did not want to show happy autistic children. They didn't even want to show the children doing well in the programs they claim are so desperately needed (whether or not those programs actually benefit autistics). This is very bad programming (in both the media and mind-control sense). It is a one-sided portrait of hell, in which autism is not just a problem but a horror-movie curse.

If autism is a curse, it is a manufactured curse. The video is its own self-fulfilling prophecy.
conuly From: conuly Date: June 12th, 2006 11:52 pm (UTC) (Clicky!)

Re: I've posted these observations elsewhere, but just for the record:

The video is its own self-fulfilling prophecy.

This video, and the attitudes that spawned it.

However, to many people in this world, it's not enough that their autistic kids be happy, or communicate, or any of that - they have to be normal.

And when you set that as your goal, you're going to fail.
maelorin From: maelorin Date: January 19th, 2007 08:57 am (UTC) (Clicky!)

Re: Icon ...

LOL.

There's a warning I hadn't thought of for my office!
From: (Anonymous) Date: June 10th, 2006 07:03 pm (UTC) (Clicky!)
Hey, I really enjoyed reading your thoughts on this video, pretty much the way I felt as I read it but I loved the blow-by-blow.
From: alephzombie Date: July 25th, 2006 03:57 pm (UTC) (Clicky!)
If this video had been made this way about kids born blind or with cystic fibrosis, all involved would have been CRUCIFIED.

I'm so sick of autism being treated like a disease that only affects bystanders. I'm so sick of nobody even opening their eyes to the fact that, unless we luck into a good family, we grow up with our very first memories revolving around how our displays of affection aren't enough, our thoughts and feelings aren't valid, our comfort is of no importance, and it doesn't matter if we're in HELL within our skulls so long as we keep quiet (only don't keep quiet when you're expected to NOT be quiet) and don't draw attention to ourselves (only don't be still when you're supposed to be moving).

Honestly I wasn't even shocked by the fact that she would say those sorts of things in front of her autistic child. I'm used to my parents and even THERAPISTS talking about me that way in front of me, despite the fact that they never 'stigmatized' me by actually telling me I had autism. I just knew that I was raised to feel like I wasn't a valid person, didn't even have a right to define how /I felt/, and they left me struggling nearly my whole life (till my husband became determined to find out why I was suffering so badly) thinking I could just try hard enough and NOT BE AUTISTIC. THAT is pain. THAT is loss, losing most of your life to their fantasy of getting you to turn into their perfect little copy of themselves.

/POOR THEM/. It must have been so hard for THEM.

God, if only one of these supposed advocacy groups would just hand money over to an orphanage which would raise autistic children with the love and affection we are so capable of giving and appreciating on OUR OWN TERMS. If only.
conuly From: conuly Date: July 25th, 2006 10:01 pm (UTC) (Clicky!)
*nods*
maelorin From: maelorin Date: January 19th, 2007 09:05 am (UTC) (Clicky!)

propaganda is a fine art, commonly called marketing.

goebbels would be proud. and cringe. at the same time.

i haven't seen this mockumentory, but i'm not sure i want to. there's only so much fundamentalism i can stomach before i want out.
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User: conuly
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