In Which I Watch the Video
Jun. 7th, 2006 12:02 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
conuly
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![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-syndicated.gif)
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.
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.
