Autism Every Day, or Autism Staged?

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Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work.

That’s from an Alternet article that still seems to view doing the above as a good thing. The article even justifies and glorifies the quote in that video from the woman who considered killing her child. Apparently it’s “brave” to say something like that, and that makes it okay. (I don’t think so.) Apparently, also, nearly all parents of autistic kids have fantasized about killing us at one point or another and would know that if they looked hard enough. I’m not even going to dignify that last idea with a response.

But aside from the cultural shift towards basically “the courage of emotional honesty” being enough in what’s obviously a propaganda piece, read that paragraph I quoted from the article. They artificially made themselves and their houses look more unkempt than they were, and they kept the supports they normally use out of the way in order to get footage of autistic people — who were forced into this situation by the people making the film, mind you, which is beyond exploitative — doing things that made people feel sorry for the parents.

This was, as expected, not really a “slice of everyday life” from these parents’ lives, but a deliberately engineered take on the worst they could make things look. Why aren’t more people complaining?

Just imagine being an autistic kid and having your parents screw up your routine and make themselves look worse off than they are in order to talk about how miserable your presence in their lives is and how one of them has even thought of killing you. So that this can be shown to an entire nation. Yeah, doesn’t sound good to me either.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

69 responses »

  1. “Thierry told her subjects not to do their hair, vacuum or bring in the therapists.”

    When I read that I thought it meant they were told not to do the extra preparations that normal house-proud mothers would do if notified they are going to be on TV.
    And I would have thought that “bring in the therapists” implied “to get the kids more typically-behaved than they normally are, for the filming.”

    Maybe my reading of this is based on the fact that I have some house-proud friends and I have watched too many reality shows. But I wonder if that’s maybe what was meant…

    “The result is a window into an exhausting world of interminable work.”

    Um, isn’t that what motherhood is, anyway?! Part of the reason I’m not ready to have kids, autistic or otherwise, is that I understood this to be a fact of life of any parent and am not sure I could do that.

  2. I found Thierry’s comment extremely offensive when she states “all” parents of autistic kids have fantasized about killing their children. How dare she make this assumption about me and other parents!

    And, Ms. Thierry, parenting ANY child is hard work. I have three, one of which is autistic. And all my kids require “interminable” (as Thierry describes it) time, attention, and work, though I would never describe it as an “interminable”. It’s a choice I made, and I’d never change any of it, or express the desire (as so many parents seen to do) to “trade” any of my kids for a different model.

    BTW, this blog (along with the other autism hub sites) has been my introduction to disability rights. It is so refreshing to see another point of view than some of the “pity party” ASD parent sites.

  3. In answer to your question, Elaq Chen, I’ll posit that they’ll feel as they’ve been had as much as many viewers (and the parents in the video) will someday, too.

  4. I have the distinct impression that most parents have at some point *felt like* killing or doing actual bodily harm to their offspring, and yet it’s almost never said in public; so to that extent it is courageous to speak of it.

    But it’s not courageous to suggest that there’s capital-s Significance in such feelings, nor to consider killing a child, as if that were a reasonable option. Nor to suggest that it’s the child’s fault if one does. Nor to suggest that one ‘kind’ of child is intrinsically and solely infuriating, exhausting, fol-de-rol, whereas other children are all joy and talcum.

    And it’s grotesque to treat such feelings as monstrous in the general way, but close-to-acceptable in the case of some children.

  5. I’m not a parent, but from the abundant literature about parenthood I get the distinct impression that the infanticide fantasy is utterly commonplace. (No, not universal. But commonplace.) There’s nothing particularly original about it or unique to the parenting of a disabled child. I know happy, well-adjusted mothers of happy, well-adjusted children who freely admit they wish they had never had kids at all. (Well, they don’t want to kill their kids. As I said, they’re happy and well-adjusted.) And as far as I know it’s so common that there’s nothing particularly brave about admitting it.

    That said, if a mother did mention infanticide fantasies to me I would be very concerned, because that would suggest that she didn’t have the perspective to distinguish her own stress from her child. I mean, if I have canicide fantasies about my chihuahua (which I do, from time to time) I don’t go around talking about how my dog has ruined my life and how I think about killing him. I take stock of my situation and figure out what’s wrong. Am I personally overstressed? Have I taught my dog bad habits? Is my lifestyle poorly adapted to dog-ownership? Am I being realistic about acommodating my dog’s needs? Do I need help figuring out what to do? If I just complain that I want to kill my dog, then my dog is in danger and I’m not being very creative and am showing a distinct lack of insight.

    Parenting is tough. It just is. Especially tough when you have to do it all by yourself as a SAHM in the suburbs and you suffer from a structural isolation that is very difficult to overcome. Being scandalised about mothers admitting that it’s tough, or that it’s too much for them, or that they aren’t creative enough to meet the challenges, is kind of pointless. One of my favourite baby-book authors, Penelope Leach, reassures her readers in advance that while perfect parenting may be described in her book, nobody expects individual parents to be perfect all the time. All parents would fail that standard. “Good enough” really is good enough, and, she offers encouragingly, a full 70% of parents meet the “good enough” standard.

    Meaning that 30% don’t. We aren’t talking about a subset where parenting offers special challenges – poverty, disability of parent or child, parents having been abused as children themselves. We’re talking about *all* parents. 70% are good enough. To me, that doesn’t suggest we need to be scandalised by the 30% who are not; it means that something is dreadfully wrong at the global, social level.

    A 30% failure rate does not mean that failure is ok: on the contrary, it means it’s so common that there’s no excuse for not recognising it and asking for or supplying help. It does not mean that infanticide is ok, it means that the taboo against infanticide will always need reinforcing. But despising parents who aren’t up to the challenges means that you need to despise an awful lot of people, and I’m not sure that it’s useful.

  6. I have thoughts of doing all sorts of horrible things. Not necessarily of wanting to, just of doing them. The difference is that I don’t, say, think of killing an autistic relative and decide not to only because I have non-autistic ones who depend on me and then tell the world in a video. I can understand thinking negative things, or even doing negative things, but there’s a line to be drawn somewhere, and there’s also a real culture of “emotional honesty is to be valued even if what the person is saying or how they’re saying it is totally irresponsible”. I do not think that even if 30% of parents are abusive that 30% of parents kill their kids either.

    I wrote more about my views on that video and its total irresponsibility here that will elaborate on what I say because trouble typing etc:

    http://ballastexistenz.autistics.org/?p=112

    Saying that something is wrong is not the same as despising someone or viewing them as a monster. Part of the societal influence here is that these ideas go unchallenged when the child is disabled. Challenging them even strongly is not hate, it’s necessary.

  7. “Saying that something is wrong is not the same as despising someone or viewing them as a monster. Part of the societal influence here is that these ideas go unchallenged when the child is disabled.”

    Yes, and I realised afterwards that I’d forgotten to make this point along with “A 30% failure rate does not mean that failure is ok: on the contrary, it means it’s so common that there’s no excuse for not recognising it and asking for or supplying help. It does not mean that infanticide is ok, it means that the taboo against infanticide will always need reinforcing.” I apologise for the omission: it was a crucial one.

    Being a “good enough” parent is actually pretty basic. Being able to keep your child safe, letting her feel loved and providing sufficient consistency to make the world manageable and intelligible. If you abuse or neglect your child you are not “good enough.” While 30% of parents do not kill their children, they do fail some fairly fundamental standards. Even though almost all parents want to do a good job, enough fail that we have to wonder why parenting seems to be so hard. (Note that the mother in the video didn’t kill her child either: she failed in other ways.)

    Yes, I agree about the distinction between thinking horrible things and talking about them – especially talking about them in a destructive way. Most people think horrible things at least sometimes, but most of us manage our thoughts in other ways; most of us are able to understand these sorts of thoughts as a form of venting, not something that must be acted on.

    The fact that the mother in the video wasn’t mature enough to do these things is what triggers me to worry about her kid, not the fact that she was having the thoughts in the first place. It’s absolutely inappropriate not to be concerned for the kid. (Apparently she’s able to be an adequate parent to her NT child though: while her fitness for parenthood might be marginal, it seems she can get by as long as circumstances aren’t too demanding for her.)

  8. It’s a great pity that Alternet, usually a great site on most issues, saw fit to carry an article which so blatently uses the “autism is a disaster” view. It would be much more productive to concentrate on the ways in which society marginalises and oppresses not only autistics but also their carers, families and parents. The problem for the parents is not the autism, but society’s failure to provide the support for people who need it. I have to admit, incidentally, that I didn’t read the whole article – I got as far as the guy going on about how devastating autism is and pretty much gave up on it.

  9. I’d agree probably every parent has fantasies about not ever having had kids; on a rough day, you think back to those childfree days, or you think about some idealized version of parenting where you don’t have to do much work, your kids are “perfect,” etc. But would I ever tell someone other than my husband about that? No. Having fantasies about being childfree isn’t the same as telling a stranger that you’ve thought about killing your child. Even if a close friend told me that, I would be concerned.

  10. PS: even though I disagree about the reality-show aspect of the description, I would agree that probably most of those kids are being “used” in the filming, because I assume most are not yet in a position to say their side of the story, so it’s the parents’ story, not the autism story.

  11. PS:

    “The majority of the harsh criticism surrounding the film is directed at Alison Tepper Singer, a mom featured in the film and a staff member of Autism Speaks. About midway through the film, Singer discusses her reaction to inadequate classrooms. ‘I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools.’ It was only because of her other child, she said, that she didn’t do it.”

    That woman seemed to say that she would rather kill herself and her autistic kid than put her autistic kid in an unacceptable school environment. While this is awful that she got to the point to think that, and while it is especially awful that she didn’t do it only becos of her _other_ child (something i didn’t realize on first reading!), there is some compassion of a twisted kind, in not wanting to put her kid in a school that was no good for her.

    I know people who have considered suicide along with their (“normal”) kids, because of abuse problems affecting all of them. But they didn’t do it (instead, the mother and children left the abusing father). This woman didn’t do what she thought about either. Yeah, it’s a crazy reaction (why think “murder-suicide”, when you could think “homeschooling”?!. Yeah, it’s wrong. It would have been a whole lot more wrong to actually do it.

    It is also be wrong to blame it on autism (as the article and/or film says, “most mothers of autistic children” could feel this at some time or another), instead of on the difficulties that face a whole variety of mothers with a whole variety of problems, such as lack of support in the family or community.

  12. The bad thing about the school was supposedly that it was “overcrowded” because there were about 20 students per class. I don’t know where Singer grew up but when I was growing up parents had to pay a fortune to get a class that small.  The norm was 35-60.

  13. That’s all?! I didn’t get to see the film, thank you for explaining…

    I have seen what I thought to be “typical” special ed and deaf ed classes with much less than 20 kids per class, maybe 8-10. But maybe we are from different regions or maybe it was mainstreaming.

    Crowds could freak out some kids, sure, but classroom crowding is not generally considered a problem to die for.
    (mild sarcasm or irony is intended here.)

  14. PS: (sorry, my words are conflicting each other today, so, one more rethinking and rephrasing)

    We could blame the parents’ _frustration_ on their problems of not getting enough help.

    But of course the parents have the responsability for what they actually choose to DO (including, as you point out in the “background” article, what they choose to PUBLISH -something I hadn’t thought of).

  15. Redaspie:

    The problem for the parents is not the autism, but society’s failure to provide the support for people who need it.

    We’ve disagreed before in that I think the problem is not the autism, but society’s construction of what autism is and how horrible of a way of being it is.

    And what’s with the 20 kid classroom? WTF? I’d be happy to have found a classroom at all.

  16. I agree a lot with Joseph.

    Some of the frustration over “lack of support,” is over lack of assistance to do things that are not actually necesary for the kid’s well-being and may even harm the kid. But that make the parents feel as if they are doing something.

    I just read a book by the mother of a child with an intellectual disability. She described this sense of “wanting to do something” that became so strong that she gave her child bogus treatments for years before realizing she was harming the child. During those years she complained about the “lack of support” in doing those “treatments”, but then she realized she wasn’t getting medical care for her child at all, she realized she was just trying to be “doing something”.

    In that case I would blame her frustration largely on the medicalized, pathologized mentality that makes parents think they have to be frantically doing something. There’s also a huge problem with the idea that there’s a magic age past which people “can’t be helped” and therefore you have to cram all the franticness into the first few years and then despair.

    I don’t think society should support this mentality or any outgrowths of it. And much (not all) of the “lack of support” people claim to experience, is “support” for the outgrowths of this highly destructive mentality. So I have a real problem with the claims of “lack of support” being the culprit, not just for their avoidance of the person’s ultimate responsibility in a society, but for the fact that they are usually complaints that are part of a mindset that does encourage people to think in ways that make them potentially dangerous to autistic people.

    So… yeah, I’m with Joseph on this one.

  17. I *partly* agree with that, but I think it’s important not to fall into two traps. The first is to just deny that bringing up a child with a disability, be that autism or something else, does not bring additional challenges to bringing up a non-disabled child. Of course these challenges are partly because of the mindset that you describe (which I think comes from society and basically brainwashes parents into thinking about their situation) and also of course because of discriminatory practices in society at large, but also its because in some cases autistic children do need a lot of extra care. For instance, if they have no sense of danger, or severe sensory issues, or serious gross/ fine motor skills problems.
    The other trap to avoid, I think, is arguing that parents calling for more support are simply avoiding their personal responsibilities. Arguments of this type have been used in the past to oppose public welfare programmes to parents, children, the poor and unemployed and a wide variety of other people. For instance, it is argued that the unemployed should not be supported by the state, but that it is their responsiility to find work and pay their own way in the world. Similarly, it might be argued that parents have no business crying about public support, and that it is their responsibility to bring up their children, and no one elses. I would disagree with this view – I believe that *all* parents require support. As a socialist, I simply don’t believe that the bringing up of children should be left to parents – it should be the responsibility of the whole community.

  18. Parents calling for more support are not simply avoiding their personal responsibilities. (Some parents calling for more support, however, are engaging in all kinds of things that are more harmful than the “lack of support” is.)

    Of course, that’s how you read my comments that calling for more support in the aftermath of a murder while using the murder to justify demands for more support is irresponsible, but your reading of my comments is inaccurate. It’s not irresponsible because parents should “be responsible enough to not need support,” it’s irresponsible because it contributes to the mindsets that allow the murders to continue.

    You’re a Marxist, correct?  Doesn’t Marxism consider me to be in some category that’s roughly translated in the same way as “Ballastexistenz”?

  19. Isn’t this an example of what’s called a “motherhood” issue? You declare X (dubious) is Y (sacred), and then when people object to X you accuse them of objecting to Y.

    Union-busting laws are called “right-to-work” legislation.
    Sexual discrimination and homophobia are called “family values.”
    When nobody in their right mind will help you torture your child or pay for useless treatments you call it “lack of support.”

    This sort of bait-and-switch propaganda and disingenuous presentation of self as nice nice nice nice nice probably goes back as far as language. So any time someone uses a vague, nice-sounding phrase you *always* have to look and see what particular acts and policies are being referred to. You can’t just stop at the nice-sounding phrase.

    (I think this is one of Amanda’s recurring themes.)

  20. Pingback: Janna’s Thoughts… » Blog Archive » Ridiculous.

  21. “Just imagine being an autistic kid and having your parents screw up your routine and make themselves look worse off than they are in order to talk about how miserable your presence in their lives is and how one of them has even thought of killing you. So that this can be shown to an entire nation. Yeah, doesn’t sound good to me either.”

    I don’t like how you assumed what the reader’s answer would be. Even though that is my answer.
    The Schafer Autism Report did the same thing:
    “Suppose you were the individual who, without treatment, was destined to be standing alone in the corner of an institution, dependant on everyone around you to take care of even your most basic needs, rocking perseverately and unable to sample what life has to offer. Would you like someone who could speak and could interact with the everyday world speaking on your behalf and counseling against treatment? No, I wouldn’t either.”
    My reaction to it was stronger because the answer they assumed was actually not what I believed, but although my emotionakl reaction is worse when an opponent does something I find upsetting, I don’t think it’s more justified.
    Had you said “I know I wouldn’t like it.” or something like that I’d be fine with it.
    Other than that I agree with your entry.

  22. Pingback: Autism Blog Web Design Blog: » Lauren Thierry, Autism Every Day, Why Lie?

  23. I guess when I think of “support” for parents, I think of people in their family, church(?) or friends group, who could get to know their kids and help them out sometimes. I wasn’t necessarily thinking horrible and misguided therapies, although I guess that’s what it means to some people.

    What a tangled web communication is, huh?!

  24. For instance, it is argued that the unemployed should not be supported by the state, but that it is their responsiility to find work and pay their own way in the world. Similarly, it might be argued that parents have no business crying about public support, and that it is their responsibility to bring up their children, and no one elses.

    When the government is able to provide social assistance, I think it should. But this is really a separate issue from becoming a murderer because of lack of support. I’m not aware that people in the third world are killing each other on the streets because of the utter lack of services for autism (or for the lack of unemployment payments for that matter). I’m not even aware of complaining on these specifics — they have other priorities. IMO it’s important to admit that much of the despair and whining that goes on the the privileged world comes to a large extent from being spoiled by an affluent society that expects everyone to achieve, contribute, and be completely normal or better in most ways.

    Certainly, in some societies murder occurs more often than in others. This is probably true in the third world, where excess murder is likely due to economics and reduced law enforcement resources. But I’ve never heard of a murderer being justified on the basis that the murderer was suffering economic hardship or because the government did not provide sufficient law enforcement.

  25. I’ve been involved in making a teaching video about the effects of having a child with a complex disability has on families (it’s for medical students). We tried to be very even handed; there are bits that are tough, there are bits that you as health-people can make unnecessarily toughter, there are bits that are the same as with every kid, there are bits which are fun and bring you immense joy. The families talk about the love and joy their kids have brought, and there’s footage of these kids out having fun with siblings.

    And still, at the end of all this we get evaluation forms (not all of them, and a minority but still a number) back which talk about how terrible this all is for the families. By the time they get to us they’re so wedded to a medical model that almost sees disability as worse than death that one teaching session can’t get through to them even a little bit of the love and joy. If they watched this it would confirm their existing views – I don’t think that they’d question it at all.

  26. Amanda, I wasn’t talking about disabled kids being killed by their parents, I was making a more general point about services. I don’t think lack of support for parents ever justifies or excuses killing kids and I hope I’ve never given that impression. On Marxism:

    “You’re a Marxist, correct? Doesn’t Marxism consider me to be in some category that’s roughly translated in the same way as “Ballastexistenz”?”

    Not to my knowledge, no. Then again there are many different kinds of Marxist, and indeed we Marxists are notorious for arguing amongst ourselves about all kinds of issues. On what basis do you think Marxists would consider you to be in such a category as you describe?

    Alison: I see where you’re coming from, and I think it would be helpful if I tried to be as precise as I can within the very limited expertise I have about these things. It’s certainly true that many parents, when they talk about the need for support, are talking about medical treatments and such things. For instance, those parents in Canada that were campaigning for free ABA for all autistic children that Michelle Dawson spoke out against (the Auton case I think it was called). I agree with Dawson of course, and oppose the parents in this case. However, I would argue that in many cases crappy support is better than no support. There’s an example in Britain which might be useful in illustrating what I mean by this. The British government a while ago was planning to slash funding for sheltered employment schemes for disabled adults, which would have resulted in many of them being closed down. Some disability rights activists thought this was a good idea, because these schemes were exploitative and oppressive, and turned disabled people into cheap labour without teaching them any skills. However, I would argue that the government’s plans should have been opposed because, no matter how crappy these schemes were, the alternative for the disabled people involved was even worse – unemployment and increased poverty. Of course, I would also argue that these schemes should be replaced by something much better, but just closing them down and not replacing them, as the government was planning to do, would have just made things worse. So, in situations where the only realistic choice is between crap support and no support, then I would prefer the crap support – for the time being.
    Another point also – if we are going to criticise parents for wanting certain forms of support which we regard as oppressive or damaging to the children involved, then we need to be arguing for what we would put forward as the kind of services and support that we actually would want autistics and their carers to recieve.

  27. Seems worst to me than any “Asperger self suspecting” person does by faking stimming in front of others. (no one’s admitted it to me which would be the only proof of that happening but I suspect it happens).

    Well, people suppose all these “normal verbal adults” can’t be autistic and are just lying, adopting a label and “acting out” but when these “normal parents of autistics” do it, it’s suddenly ok?

    Here, they’ve actually admitted to it and then they justify it some *more*? This is “all good propaganda for our cause eh kiddo?” ???

    My jaw is on the floor and seems stuck there (figuratively exaggerating the common figure of speech here). I can’t believe what I’m reading. Still, I expected more and thought they were just honestly misguided. Now I think they are vile and disgusting villains not unlike the villain with the waxy moustache in True Blue and Trusted. I mean, these are like Dastardly Dan types of producers who get little evil grins and wringing hands as they brag how they were able to pull one over on us for the “emotional honesty cause”. Some “emotional honesty”. Meh.

  28. I had intended to leave a comment about the film on the site but I forgot…..or perhaps I only think I forgot and really didn’t want to. Plus I didn’t “get” the message in it that parents want pity….right then. Some of us are slower at understanding this kind of thing I guess….I sure am. Heck, I went on a Walk for Autism Research, simply because someone from a message board had told me about one in my area, and I got all excited because a) it involved walking, something I love doing, b) I was gonna meet that lady who told me about it there, and c) it had to do with autism. I didn’t think about any other hidden agenda beforehand. Boy did I feel dumb afterwards when I figured out what the whole point of it was. I had some thoughts about all the statistics I saw along the way, being overly pessimistic and exaggerated, but I didn’t put two and two together, until several weeks after I went on the walk. And, even worse, made a donation for it. Boy I still feel stupid for that. I am even admitting that here because total honesty entails admitting even things one is less proud of (or in this case, not proud of at all.)

    ai

  29. I’ve seen it. :-(

    I haven’t had the chance to blog about it. Things like this make me really emotional and it takes me awhile to get together what I think about it. In this case I have some things I want to say, but it’s going to take a bit for them to coalesce into words.

  30. After reading many of the comments on this site regarding “Autism Every Day”, I feel a need to make comments of my own…to those who are apparently ignorant to what it’s like to go through life as the single parent of an autistic child and the hell it is most of the time for both parent and child. We do have positive moments and we cherish each and every one of them, however the reality of this situation is that “good times” are far and few between. How many of you have had been abandoned by the father of your autistic child, the person who had Asperger’s but was never diagnosed and passed his inferior genetics on to an innocent child who will suffer for the rest of her life? And whose family didn’t bother to tell the expectant mother about the father’s very unusual behaviour as a child until after his daughter was born. I had a great career at the time and was thoroughly enjoying my life, then found myself pregnant. Planning to have an abortion (and if if meant that I never got to see my daughter’s beautiful face, it would have been preferable to the hell and suffering this relentless disorder puts her through daily)it was her father whom I let talk me into going through with the pregnancy before abandoning us 6 weeks prior to her birth.I had no idea what Asperger’s or Autism was all about until my daughter was diagnosed 10 years ago and then only 4 out of every 10,000 children were diagnosed. How many of you out there, especially those who have no children, have experienced the hell of watching your child suffer, watching people make rude comments and threaten to call the police on you because your child is having a public meltdown???? Those of you without children, have no position to comment on this and your opinions are less than appreciated. How many of you have had to give up careers and be forced into the humiliation of living on welfare and have friends and family support you after losing everything short of the shirt on your back??? Many people with autistic children have had suicidal thoughts including myself, but I realized if I take myself out, there is no one in my family or her father’s “lovely” family that would take care of her, therefore, she would have to go with me and at that point the thought stops as I could not consciencely do that to her, neither kill her or leave her an orphan. She would have been better off without having been born in the first place. To live her entire life in a hellish existance. Why should any innocent soul be condemned to that??? Autism has detroyed our lives! The documentary was “reality” and was excellent because each and every situation in it, we have lived first hand. Tears rolled down my face as I watched it and then watched it again. Only those who can’t except reality or don’t live in this reality are the ones making negative comments about a film well done!

    • Miss Jones,
      I’m rather frightened of children (as well as most other humans, for that matter) and have never considered having any of my own. But if you don’t like dealing with your child’s “inferior genetics”, may I adopt her? I don’t know if I could be a good or even mediocre parent, but at least I wouldn’t let her spend her life thinking she never should have been born. Even with my social skills as they are, I am not oblivious to how much that kind of attitude could contribute to “a hellish existence” in even the most picture-perfect neurotypical child.

  31. If you honestly think that you can decide that someone else is better off never having been born, then you’re far more out of touch with reality than any of the people criticizing the film. And trust me, many of us criticizing the film could play the “Woe is me I’ve had a miserable life” game, and possibly win, from the autistic perspective (including some with parents who abused and then totally abandoned them for good into institutions, homelessness, or both, as well as people who’ve experienced all you say and more as an autistic person), but we don’t happen to see life that way and view that kind of competition as a focus away from the political reality of your viewpoint, a viewpoint that has implications for every last one of us on the planet. (Remember, some of us have survived attempted murder, some people have been forcibly sterilized, it’s us who have to live — or die — with the consequences of your better-off-dead and inferior-genes rhetoric.)

    Life is hard for a lot of people. Most of us can find value in our lives anyway.

  32. KD, someone will always have it worse than you. someone will always have it better than you. someday you might actually look back at the memories of those looks and comments you get and realize that it just wasn’t as bad as you thought. chill out and get a grip. and lumping the father abandonment issue into the autism issue is a sure fire way for resentment to be passed off to your child.

  33. Excuse me, Ms Jones,

    I am the parent of a child who had plenty of public meltdowns. A child who was often rude to me and to others. A child who never slept through the night, and kept me from seeing my friends. And that is my NT child! I have news for you. Having a child is hard work. It is harder by times with a child with ASD (of which I also have one), but it is not picnic either way.

    I understand that you feel abandonded by the father of your child. That is your right. But can you explain exactly why your child has a “hellish existance”? Exactly how she is “suffering”? The suffering all seems to be yours. I don’t think you were ready for a child. Perhaps you should consider adoption.

  34. For that matter, not just the abandonment issues. Don’t put other people’s ignorance or bigotry on your autistic child. Don’t put police ignorance for that matter on your autistic child. Don’t put the humiliation that people in the welfare system put you through on your autistic child. (And if you’re simply humiliated by the idea of welfare, rather than the nasty processing the system puts you through — which I know a version of all too well since I’m on government assistance myself — don’t even dare put that on your autistic child.) Autism is not to blame for any of these things.

  35. K.D. Jones,

    I’m a parent of an autistic boy and autistic myself. Am I allowed to have an opinion then?

    First of all, if your life sucks, that’s your problem. Blame it on autism all you want, but the fact is that many of us parents of autistic children don’t share your views. There must be a reason for that other than autism.

    Second, what’s this about our inferior genetics? What the hell make your genetics so superior? I’d much rather keep my genetics rather than have a predisposition for self-hatred and bigotry.

  36. It’s clear also that the “inferior genetics” view and the “having an autistic child sucks” view necessarily go hand in hand. For anyone with an autistic child who wishes their life not to suck, discarding the autism=inferiority view would be a highly recommended first step.

  37. Ms Jones,

    If you can’t handle having an “inferior” child talk to social services. They’ll hook your child up with a foster home that doesn’t think his way of being has ruined their life, but enhanced it just by his existence.

    You are making life suck for you with your attitude. Your kid isn’t STUPID, we’re good at telling when people think we don’t deserve to live. Yes, I have been abandoned by an Aspie father, and a bipolar/ADHD mother, and their respective abusive new spouses. That’s life. I deal. I find ways to make it better.

    But in your view, I’m inferior? Yeah. Call social services. Like, now.

  38. Good grief. I was in a similar situation, to KD Jones’ and it lasted for more than a decade, nearly 2 of them… except my ASD kid didn’t have meltdows that made people stare, and so forth. But s/he did nearly die a few times and because of his/her medical problems that were extensive. And I did it as an undx’d Aspie. My ex is probably undx’d Aspie. His “inferior” genes as well as my own INFERIOR genes made two kids, one with lots of problems that is and has been a hugely wonderful part of my life, and those same genes made a very healthy, normal kid (both ar now adults). I’m still a single mom.

    KD, you need to get a grip. You will be passing your hatred of your child to her as surely as you suspect your ex-whatever of passing on “inferiror” genes. Your life is different than you want it to be, but you made the choice to have have sex with the child’s father, that put you in a position of changing your life course. Sex is a big deal, people don’t realize the life changing consequences it can have… anyway, if you hadn’t had this child or if you had given her up at birth… you might have married a nice normal guy who could just as easily ruined your life a different way… say … given you AIDS or hepatitis or maybe he could be a child molestor or rapist, wife beater or thief… there are loads of ways men can ruin women’s lives, and vice versa….

    Suck it up dear. You have a hard load to carry, but a hard load can create depth… you don’t want depth, I know. I didn’t want that kind of depth, either, but somehow suffering as long as I did, mostly without complaint, did develop a kind of depth in me that wouldn’t be there had I been pampered all along my some doting rich man or by having endless cash and taking care of myself for that matter… Don’t blame that beautiful child for the choices you have made or the choices her father made, or for the stinky welfare system. If you need more help, sometimes you can get it by asking. I hardly ever asked for help when things were horrible and I made my own load much heavier because of being too independent.

  39. Pingback: Autism Every Day - a late response « Action For Autism

  40. You are a complete idiot. The idea was not to sugar coat and present everyday life in it’s truest form. Do you have an Autistic child? Probably not, or you wouldn’t be rambling on about propaghanda and your other crap.

  41. Pingback: Autism Vox » In the wake of Imus’ ouster

  42. I have to say that I partially agree with Thierry. I have an autistic child who is 8 and is only just newly diagnosed after years of trying to convince doctors that something was wrong with him, only to be told that he is normal just behind. I remember the really bad days where I had 3 toddlers (including my autistic son) and my newborn daughter going to the store and him just taking a temper tantrum over nothing. And these we recorded up to 30 times a day…nothing wrong my behind! I remember feeling so helpless, because here I was with a newborn baby in my arms who needed me for every whim, and two other toddlers who also needed me and than my son who I didn’t know how to help. I used to pray to God (my mother is a minister) why is he doing this, what is wrong with him, please just let him be with you if that is what is going on. Every parent has those thoughts, more expecially at a time of great need and support. We had none and still have none…there are no programs here for autistic children at all, so we have to do the best that we can for him along with his psychiatrist. We were lucky however and found an incredible program for behavioural problem children and got him in when he was only 3. If it wasn’t for that program, he wouldn’t be where he is today, but we still have a lot of work to do with him and no support what so ever. Even my in-laws state that there is no such thing and he is fine. I think people need to start realizing that there are certain circumstances for each person. For us, no programs available, and even if they were we are a low-income working family. We can’t afford those type of programs and there is no government funding for these children here as it is not recognized as a disability that is up the rise. I thought that doors would open with his diagnosis, I was wrong…they closed. Maybe everyone should think about what circumstances there are for each family, we all know it isn’t easy being a parent throw in autism and it’s 10 X tougher, more expecially if you have other children.

  43. i am a teacher of autistic students, and if you had ever personally spent any time with autistic people, especially children, than you should.
    this film does a very good job of illustrating how difficult it is to work with autistic children.
    the behaviors and tantrums they show in this video are very mild, compared to the everyday behaviors of many autistic students.
    we have students who bite, poop on themselves, break windows and doors, when they dont get what they want, or just for the hell of it.

  44. Joe,

    I don’t know even know how to start to respond to your post…Do you not realize that Amanda is autistic…was an autistic child herself…and
    spent some time in a school where there were a lot of autistic children?…That she witnessed first
    hand autistic children’s needs and communications being ignored and then their resisting the coercion and that was seen as bad behavior…? Get rid of the flourescent lights…the white walls…the distractions…Who needs Irlen lenses
    to actually see faces or ear plugs to soften unbearabley loud sounds?….Try to really look for communication…..maybe different then what you are asking for…..I doubt they are doing
    something “just for the hell of it”…

    (Amanda, you don’t have to post this message if it is too personal….

  45. “For anyone with an autistic child who wishes their life not to suck, discarding the autism=inferiority view would be a highly recommended first step.”

    This makes sense to me. The “cure” vs. “neurodiversity” arguments some times seem like so much semantics– until you consider how these mere attitudes will impact your child, your relationship with your child, and your own happiness.

  46. Wow, I didn’t know I was supposed to feel so horrible about having an autistic child, and not enough money to pay for private therapists, etc. I, too, have to literally wrestle with my son to brush his teeth. He doesn’t rock, but he flaps, screeches, and paces. A LOT. He’s started hitting myself and his siblings.

    But he’s got the cutest laugh in the whole world. He plays his own fun little repititous game of chase with one older brother, and plays with lightsabers with another. He brings a smile to our faces daily. He’s a gift, and I can’t imagine our lives without him, in any way, shape, or form.

    I feel sorry for the lady who thought about killing herself and her child, but I think it was extremely irresponsible of her to voice such thoughs aloud, in a fundraising video.

    OK, never mind. I think it was disgusting. Yuck. I hated that video, and though our lives seems similar superficially, their lives are really nothing like ours, and I pity them for not being able to get past their own grief.

  47. Staged videos? I have heard of such things popping up on the internet.

    There are those who accuse this blog site author of staging videos, even staging her autistic condition. You have no more knowledge of, or ability to judge the authenticity of the Autism Every Day video, then other internet commentators have to question the authenticity of Ballasexistenz videos.

    How easy it is for the Neurodiversity commentators here to bash the parents of the Autism Every Day video for telling the truth, as they experience it, about their own children. You are all very judgmental and hypocritcal. In the real world, the world away from the internet, you would have no business telling other people what they should or should not say about, or on behalf of, their children. Shame on all of you.

  48. Difference is, when I make my videos, I am not forcing another autistic person out of their routine to make them, nor am I speaking on their behalf. I have no problem with the way videos are ordinarily produced (which includes some degree of artificial situations, even in documentary videos, you can read about the particular mix of set-up and spontaneous I use in my videos here), I do have a problem with the idea of deliberately forcing autistic children who can’t consent to the whole thing, to show bad days deliberately set up by others on camera so that people can talk about how horrible it is to raise them, and I also have a problem with the idea that it “takes guts” to say that you’ve thought about killing your own child. Plus, in my videos I make no claim to everything being exactly like it is in my videos all the time (in fact I’ve gone to great lengths to explain when my or someone else’s editing makes something out of the ordinary for me, and/or when something varies a lot over time), whereas the title of the video in which they have tried to set up the worst days possible on purpose implies it is like this every day.

    All of which is quite different from:

    1. Saying that someone’s made up their entire condition (or their child’s entire condition). (Nobody is questioning that the children in the video are autistic, and I would not allow the comments if people did try to claim the parents were faking their children’s autism.)

    2. Saying that videomaking ought to be 100% spontaneous with no awareness of the camera, planning for the camera, or editing. Which is what people expect of my videos when they call them “staged”, they mean anything other than essentially a camera springing out of midair while I go about my routine without noticing it or planning for it. (People instead have a problem on multiple levels with deliberately disrupting children’s routines more than the presence of the camera already would, and calling that an “everyday” look at their and their parents’ lives with autism.)

    Therefore, while people’s opinions here may mostly disagree with yours, we’re hardly hypocrites for having them. Here’s some examples of what people here might be hypocritical for saying or doing:

    1. “Those children aren’t autistic at all, their parents just coached them to act that way for the camera. Real autistic people don’t move like that. I’ve seen them. That little girl was showing clear signs of affection and empathy and making lots of eye contact, so she can’t be autistic, and that boy was showing joint attention, so he can’t be autistic.” (But nobody’s said that, in fact I found the children in the video a refreshing example of how many things, like empathy and eye contact and joint attention, autistic people do have that we’re said not to.)

    2. If some of us were in the practice of forcibly keeping support staff out of other autistic people’s homes, and keeping them from doing housework, while going in there and filming them having meltdowns without their consent, and then calling that “every day” you might have a case for hypocrisy for criticizing other people for doing the equivalent.

    3. Expecting the entire thing to be spontaneous, unplanned, and as if the cameras didn’t exist at all, and expecting both parents and children to be totally candid and unaffected by the cameras’ presence (or even claiming that “real” autistic people or “real” parents wouldn’t notice and/or be affected by cameras at all). Or expecting the filmmakers to be unaffected by the camera’s presence, which is an impossibility.

    4. Claiming that things that the parents on the video have been up-front about for years are actually dark secrets.

    Etc. But I haven’t seen any of us doing/saying any of those things. Note also that I have criticized CNN’s editors (not the reporters, who were for the most part fine) on multiple occasions for being sensationalistic about the single, very tiny, meltdown I had on camera (both playing it over and over to make it seem longer than it was, and giving a cause for it that was explicitly contrary to the cause I clearly stated while being filmed), and have attempted to correct the factual errors that mistakenly crept their way into that broadcast, as well as the impression that I was somehow at my best or most normal-looking those two days of filming (I wasn’t, I was way too nervous, and they for whatever reason — still not sure whether by accident or not — edited out the most obvious signs of expression, emotion, or spontaneity on my part), and as well as reducing the complexity of it. I even gave an interview with Donna Williams in which I told her everything I’d told CNN that had gotten edited out (again, not sure whether deliberately or due to time constraints). If I wanted to be portrayed in a far more stereotypical and far less capable light than I actually am, I’d have had zero problems with with CNN’s portrayal of me and wouldn’t have publicly corrected them. Instead, I have multiple posts such as Editing, Assorted things I’ve meant to say, from the other side of the time-barrier, as well as comments, and an interview with Donna Williams that was largely a result of media distortions of who I am (and that’s not to mention the numerous times I’ve explicitly contradicted stereotyped impressions of me on this blog and elsewhere, in ways that reveal current and past areas of strength people don’t expect of me).

    None of which are the actions of someone who personally likes being misportrayed by others as what people would normally call “worse off”, but who has a problem when people try to portray others’ worst days as “every day” (in other words, not the actions of someone hypocritical in this area — I also have a problem, though, with being portrayed as stereotypically “better off” than I am (the way you often try to do), in fact the reason I work so hard against the division of autistic people into two groups is that if that were to happen I would have to split myself in half, and say “At these times and/or with these traits I am in one group and at these other times and/or with these other traits I am in the other” and I’m not willing to do that since the groups are portrayed among other things as mutually exclusive).

    By the way, you’re skating really close to violating my comments policy, so watch it. (Read my about page and the anti-gossip zone page to avoid inadvertently stepping over that line.)

  49. I never accused anyone here of being hypocrites because they have a different opinion than mine. I accused them of being hypocrites because of their double standards with respect to assessment of autism videos which support their perspective versus those that do not.

    You said “Difference is, when I make my videos, I am not forcing another autistic person out of their routine to make them, nor am I speaking on their behalf.”

    Sorry but that is not a valid distinction. You are an adult, obviously intelligent, with excellent communication skills. The adults in the Autism Every Day video are the PARENTS of children who can not speak for themselves and who do not hae the legal capacity to represent themselves. Their parents right to speak for them is based on law, morality and common sense.

    The fact is you have no information to show the video is staged. The criticisms of you and your fellow Neurodiversity commentators here are based on rumor which you purport to abhor.

    Those parents care for their children Every Day. They are describing some harsh realities of doing so but if they did not love them they would not care for them day in and day out. My son is severely autistic and unlike you he does not have superb communication skills by any means. I speak for him. His realities, and our family realities are very similar to what you see in the Autism Every Day video. I can say that based on fact not rumor. I take care of him because I love him and that fact is not compromised by speaking candidly about the realities of his autism, such as when he puts his hand through windows and mirrors, grabs his mother by the hair, pinches himself or his brother, or grabs my arm while I am driving our family in the care. These are facts, realities. Conor also has a wonderful happy personality and that is displayed on my web site along with his challenges.

    I said nothing to offend your policies here. But your heavy handed threat … “By the way, you’re skating really close to violating my comments policy, so watch it. (Read my about page and the anti-gossip zone page to avoid inadvertently stepping over that line.)” … is all you need to keep me from disturbing your site with any more autism realities.

    By the way, you’re skating really close to violating my comments policy, so watch it. (Read my about page and the anti-gossip zone page to avoid inadvertently stepping over that line.)

    Have a good day.

  50. Sorry but that is not a valid distinction. You are an adult, obviously intelligent, with excellent communication skills. The adults in the Autism Every Day video are the PARENTS of children who can not speak for themselves and who do not hae the legal capacity to represent themselves. Their parents right to speak for them is based on law, morality and common sense.

    That distinction is exactly one of the points I’m trying to make. You can’t call people hypocrites here for criticizing people in a speaking for role differently than they criticize people in a speaking as role. These are two separate situations and you’re the one treating them as identical.

    The fact is you have no information to show the video is staged. The criticisms of you and your fellow Neurodiversity commentators here are based on rumor which you purport to abhor.

    Okay…

    …comments from the filmmaker, about the filmmaking process, in an interview, are not a “rumor” any more than my page about how I make my videos is a rumor.

    The “staged” part we’re specifically discussing, is the part about not allowing staff over, telling parents not to do their hair or clean their houses, etc., in order to set the stage for a situation where the autistic child will not be functioning as well, and then painting that as the everyday reality.

    Let’s just pretend that me filming myself is the same as a parent being filmed with their child. Totally equivalent. It’s not, even if it’s fine for parents to be filmed with their children (and in many situations I would say that it is, although I have more respect for parents who attempt to get their children’s consent, and yes I know parents of severely DD children who try to do that). But let’s just say that it is, and come up with an equivalent example.

    Then it would be, I guess, not me doing this to other autistic people, but doing it to myself. And then not saying “This is how I react to being in an unfamiliar situation and not having the supports I normally have,” but just “This is my everyday reality right now at this point in time.”

    Then that’d be equivalent. And I don’t do that, so it’s not equivalent at all, and criticizing people who do take that approach and say so, while not criticizing me (I don’t take that approach), is simply not hypocritical. We’re doing different things, we’re taking different approaches, criticizing one approach and not criticizing a different approach is not hypocrisy.

    Especially when one approach is named as actually being that approach by the filmmaker, and the other isn’t except in rumors started by people other than the filmmaker. (That’s the difference between an interview with the person involved and gossip about the person involved. And yes, there is plenty of gossip about the people involved in this that I would not at this point allow on this site. Note also that even if the commentary on this page were simply gossip, this entry predates my anti-gossip policy and I haven’t got through retroactively weeding the gossip out of the comments yet.)

    The part of my comments policy you’re close to violating has nothing to do with “autism realities,” it has to do with the fact that I no longer allow speculation as to whether someone is autistic or not, I’ve decided that completely derails discussions.

    And yes that means that if there’s an autistic person I totally and completely disagree with or can’t stand or whatever, I will not allow commentary on this site as to whether they are autistic or not, so it does not only apply to me or people I like.

    I have a comments policy specifically to avoid people being able to say I delete at random or simply based on disagreement. I delete things that are:

    1. Gossip or likely to perpetuate it. (Your post mentioned gossip but did not exactly necessarily perpetuate or endorse it, so was on a line there.)

    2. From people who have been told explicitly to go away. (You are not such a person.)

    3. From trolls or predators (you are not such people).

    4. Bringing people’s autism status into question. (Not acceptable anymore for any reason, it’s a distracting ad hominem tactic. You again reported it without necessarily engaging in it, but I was unsure as to whether you were going to engage in it, thus warning you in case you were about to decide to engage in it, it won’t fly here.)

    5. Painting autistic self-advocates as too atypical of autistic people to have a say in discussions of autism. (You do this elsewhere, you have plenty of room to do it elsewhere, you’re not currently doing it here, but I won’t allow it here if you do.)

    6. Appealing to prejudices about autistic people in order to say that self-advocates should have no say in things. (This would be like, saying that we lack too much empathy or social judgement to be able to understand. I haven’t seen you doing that that I remember.)

    And those things go for everyone — I won’t allow it from “ND” people either (and I know plenty, plenty of “ND” people who engage in these things, and they can do that elsewhere but I will not allow it here), nor will I allow myself to engage in these things. And I am still going through the blog and attempting to weed out stuff that violates the policy, but that’s a long project. I certainly haven’t allowed anything like this since instating it, that I know of. (I can always miss things, sometimes I only skim comments.) You’ll note I frequently post comments from people who disagree, even some who are quite disrespectful while doing so, as long as they’re not doing any of those other things.

    My prior comment policy was to delete virtually nothing but spam. One of my other commenters here described my actually developing a comment policy as going from something like “unnecessarily saintly” to “reasonable”.

  51. I have 4 children. My 2 middle boys have asd. I can honestly say I have never considered killing my autistic boys. I have considered suicide for myself. However that had to do with my own severe, physical, health problems.
    As for staging that video, consider this: As with any disorder some days are better than others. Some days your kid hits a milestone, things are still tough, but just a little bit better. Other days are brutal, you really DON’T have time to comb your hair, the therapists\sitters DO cancel, etc. Maybe they just wanted you to get what a bad day is truly like, btw – there are ALOT of bad days when dealing with asd!

  52. Had they presented the video, clearly labeling it with “We set this situation up to mimic a difficult day in the life of a family with an autistic kid” or called it something more like “Autism; On the Rough Days” (not as snappy, I know, but something with that basic idea), it wouldn’t have been so dishonest. But they presented it as “Autism Every Day”, and set it up so people could easily watch the video and think it was just a day in the life, while deliberately setting up conditions to mimic exceptionally difficult circumstances (considering that they do have therapists to cancel, the parents had to be told not to comb their hair, and the kids do have a routine to be disrupted, it was more difficult than every day life). That’s the dishonesty.

    And one of the problems with that (and the whole video) is how it takes the worst, and doesn’t just present it as “This is how difficult the hard moments can be raising an autistic kid,” but “This is what raising an autistic kid is like,” and more importantly, “This is what autism is like,”. No balance, no discussion of the ups and downs, no admitting that they’re focusing on exceptionally difficult days, and nothing from the perspective of an autistic. It’s claiming the worst and most difficult bits are the whole of reality.

  53. I missed the Aug 5 comments the first time around (probably because of the inconsistent internet access I had while traveling last month). I don’t know if Harold Doherty is still reading this, but I see a certain parrallel here with other discussions we have had on this blog particularly at http://ballastexistenz.autistics.org/?p=443 (Understanding rights vs Having rights) and at http://ballastexistenz.autistics.org/?p=102 (More careful, not less). No matter how loving and respectful you are, no matter how good your intentions are, there is always an inescapble difference between someone speaking for THEMSELVES and someone speaking ON SOMEONE ELSE’s BEHALF.

    There are times when the latter is genuinely necessary. A cat cannot tell the annoying child pulling his/her tail, “Stop it, I don’t like when you do that because it hurts.” So some other responsible adult or older child must take responsibility for speaking on behalf of that cat. A six month old infant–whether or not that infant has a disability–generally does not have the cognitive development to recognize when their discomfort comes from illness, or to understand that illness needs to be treated; and if they did, they wouldn’t have the linguistic skills to ask for it. So a parent must be observant and act upon, or speak upon, their behalf. Fine. And there are times when a parent may need to do something similar on behalf of children whose disabilities make it difficult for them to express themselves (or, it is sometimes more precise to say, when other people’s profound ignorance of adaptive communication strategies hamper their ability to understand what may actually be perfectly clear communication from the child), the parent may need to either speak on their behalf or else help amplify what the child has already said on his/her own behalf. Fine.

    But. None of us can ever fully know what’s REALLY going on inside another person’s head. That is probably ESPECIALLY the case when two people have dramatically different neurological wiring–as, for example, is the case when one person is autistic and the other not. Or even with two austic people whose neurological wiring still happens to dramatically different from each other.

    Precisely because it isn’t really possible to know exactly what a non-verbal person would say if they could say it in a way we would understand (which isn’t the same as their being unable to say it at all), any of us who is thrust into the position of speaking on behalf of another person has to be MORE careful, not less, when taking on that responsibility.

    There is an incredible power imbalance involved when one person is in a position to “speak for” or “on behalf of” someone else, while the other either truly cannot (yet) express themselves in a way that will be understood or has not yet had the opportunity to express themselves in the way in which they are capable (these are NOT the same thing). With imbalanced power comes tremendous responsibility on the person who has that power — even if they didn’t want that power, or even if they don’t SEE themselves as “having power” Power, unfortunately, tends to be the most invisible to the people who own it, which is probably the most important reason why it tends to be abused even by people who are otherwise very good, kind-hearted people. But simply because the person with power may deny the power, or fail to recognize the power, or try to “disclaim” the power, or vehemently refuse to accept the power, does not by itself disinvest them of that power. And once they have that power–whether chosen or not–they also inherently carry a high level of responsibility to use that power wisely and above all, CAREFULLY.

    For someone speaking on behalf of others, that implies a high responsibility to think very carefully about everything you say “on their behalf.” Including thinking NOT ONLY of the more immediate and direct consequences BUT ALSO the long-term consequences, including on their self-esteem and image 10 or 20 years down the line, and also the indirect or subtle (and less obvious) consequences.

    Hope this made some sense.

  54. Most of the negative comments here make very little sense. The only thing this video missed is that it did not show how porfoundly difficult life is for the family of an autistic child and how hard these kids work to attain the most basic skills. There was no exploitation of these kids here. This is reality. My gut feeling is most of these people making the critical comments have little real obstacles to deal with. They just don’t realize it. Compared to traditional parenting, which is hard, there is no comparison. Just feel lucky you are not in a position to find out. I am the father of a 7 year old severely autistic boy. I have two other children. This video is right on. This video does not lie or manipulate anything. I know what it is like to have your heart broken. I know what it is like to know your child may never speak. I know what it is like to lose your son because he ran amelessly into woods and it took about 50 volunteers to find him. I know what it is like to give every ounce of energy, compassion, love, patience and still have no effect on your child. Consider yourself lucky that you don’t know how impossible a task it is to really help your child despite your very best efforts and those efforts of the medical and educational professions. So, ctiticize away and thank God you have a life that allows you to be completely ignorant to these very real insurmountable challenges.

  55. It seems more as if you have never, at least never in depth, encountered viewpoints about the world like the ones you see here.

    And you are trying to come up with an explanation for them. The first explanation, or possibly the first relatively charitable explanation, that you have hit on, is that people who post here have never experienced things like this, and that is the reason why we dislike this video.

    It’s not the right explanation.

    Perhaps it’s identifying a lot with some of the situations described and shown in the film, and yet being highly disturbed by how they are framed.

    Perhaps it’s having a background in a way of thinking about disability that probably has nothing to do with the way you think about it.

    Perhaps it’s being too aware of what it would be like if someone with total power over us, took away a large part of our support system, and then invited camera crews into our homes to see the result.

    (I’ve personally had two meltdowns on camera, even in situations where I had a good deal of support and consented to the camera crew being there. And that was extremely uncomfortable. I hate to think what it’d have been like if they’d asked my support staff to stay home those days, the way they asked the parents in the film to do.)

    I totally believe there are children who have days like that even with all the support they can get. But it was specifically stated that this was not the usual amount of support, and that’s what I was responding to. Also to the fact that I saw children demonstrating a number of abilities that were never described in any positive way on the film (or even any way at all, they simply glossed over them in such a way that, I am told by several non-autistic people, makes it easy for people to ignore them).

    At any rate, you can feel free to explain away our opinions, but it doesn’t erase our very real knowledge and experience of things you seem to think we don’t know about.

  56. “This video does not lie or manipulate anything. I know what it is like to have your heart broken. I know what it is like to know your child may never speak.”

    I am a verbal autistic. One of my closest friends is almost entirely non-verbal. She was fifteen before she could put together a short sentence, and even then her sentences didn’t appear to make sense or relate to the situation. She is still unable to speak at all for over eighty per cent of the time.

    One of her most vivid memories is being trapped on a school bus as a non-verbal eleven-year-old, wedged in between her special needs teacher and her support worker. She needed one-to-one support all the time. (She still does.) She was rocking back and forth and bashing her head on the bar of the seat in front of her because the other children on the bus were singing, and she couldn’t cope with the noise.

    “She seems to be responding to the music, doesn’t she?” the support worker asked the teacher.

    “Yes, I think she likes it,” the teacher agreed.

    And to hear that conversation carried out over her head made her angrier and more frustated, and the only way she had of trying to communicate this to people was to bash her head on the bar. No speech.

    This is why she is particularly upset by videos such as ‘Autism Every Day’, because in these videos she sees children who are put in situations that she herself knows to be very distressing. And once again, she sees adults claiming to be able to interpret the behaviour of those children and to speak with authority on their behalf.

    This is an adult woman who has been placed on Incapacity Benefit. To receive Incapacity Benefit in her country (New Zealand) you have to be examined by a team of professionals, who submit their results to a central panel of doctors. You can only receive the benefit if both teams agree that you’re going to need intensive one-to-one support throughout your life and that you will never be capable of having a job.

    Two weeks ago this friend got very upset because the light over the sink where she normally brushes her teeth was broken, and her sister tried to make her clean her teeth somewhere else. She had had an anxious day to start with, and this was the last thing that she could tolerate. She seized the door and started bashing her head against it. Hard. She concussed herself.

    She objects strongly to videos such as the ones made by Autism Speaks. Being filmed in situations like that wouldn’t do much for her anxiety levels, so all this talk about how such films are ‘necessary’ for autistic people doesn’t make any sense.

    As I said before, I’m a verbal autistic. I also struggle with incontinence trouble and have some other messy problems that you do not seem to associate with people who speak. It’s very degrading and upsetting to film somebody in that situation, irrespective of whether they can use spoken language or not.

    Presumably you do not experience continence problems. Presumably you do not fall to the floor in supermarkets and start biting your arms when the noise gets too much. I do, and my behaviours aren’t uncommon amongst people who are labelled ‘high-functioning’. Yet you seem to assume that you have a deeper understanding of what autism is like than we have, because you have dealt with REAL problems and we haven’t.

    This puts autistic people in a very difficult situation. If we complain about Autism Speaks videos in speech or articulate prose, we’re told that we’re far too mildly affected to know what we’re talking about. If a non-verbal autistic person tries to complain in her own way – through body language that screams out, “I hate this. Stop it!” – or through signing or art, she is ignored. After all, she can’t speak, so she can’t possibly have anything to say.

  57. Well, Mr. McKenna, its like this

    If I decided you were a shithead (which I haven’t really…….this is just for the sake of argument) and then told you so to your face, in front of a huge crowd, you’d be pretty pissed off, right?

    It’s kind of the same thing for me…..to read about parents of autistic kids thinking that autism is a horrible monster and going on and on about how much their lives suck because of it, etcetera. I’m autistic. Do you think it’s exactly fun for me to wake up 2 hours before going somewhere, because it takes my brain and body that long to prepare? Not really, because going to sleep early is hard for me and I still need the same number of hours of sleep as a nonautistic young adult. Do you think it’s fun for me to have a meltdown in front of my family? No, it’s actually INCREDIBLY humiliating.

    I get very irritated with parents who believe that their lives are living hell BECAUSE OF AUTISM.

    I understand frustration. Hell, my parents have vented their frustration to each other and to me many, many times. But believe me, your autistic child is AT LEAST AS FRUSTRATED as you are, if not more so. He may not be frustrated about the same things you are, or in the same ways that you are, but that doesn’t mean he isn’t feeling frustrated about something. Actually he has the same set of feelings you do, only they are probably triggered by very different things, and manifest themselves differently.

    For the record, I do NOT think you are a shithead, Mr. McKenna. I only made that analogy because being called bad names tends to evoke a rather visceral reaction in another person’s gut, and I needed something very graphic to make my point.

  58. Mike McKenna, I recommend you read at least *some* of what someone writes before you respond. If you had, you’d know that Amanda Baggs types to communicate and is considered severely disabled.

  59. Pingback: Rodentfancy - Autism Awareness Week

  60. Pingback: Rodentfancy - Representing Autism: Culture, Narrative, Fascination

  61. The lady didn’t say she wanted to kill her child. She said that death (for both her and her child) would be preferable to sending her child to a horrible school situation. I am amazed at how easily people get angry and judgmental when they don’t take the time to listen.

  62. Pingback: Autism Speaks: it’s time to listen | Left Brain Right Brain

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