• Tue, Jul 11 2006

Karen McCarron, Alison Tepper Singer, and misplaced compassion

In Autism: The Art of Compassionate Living, Jennifer Liss of WireTap writes about the efforts of parents to battle stereotypes about autism and to raise understanding. Autism mother and ex-CNN news anchor Lauren Thierry—-who made the Autism Every Day video—-describes how she tried to capture “autism every day” to combat myths of autistic persons as “idiot savants” and of autism as caused by bad parenting.

“The party line is supposed to be that anything that raises awareness you’re supposed to be happy about. That notion is 10 years old. At this point we need to be showing the world what the vast reality truly is.” She says that reality includes images of kids not sleeping through the night, banging their heads against the wall or running into traffic — not images of kids setting basketball records or passionately playing the violin.

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.

One of those “dark and uncomfortable truths” that the article Autism: The Art of Compassionate Living refers to is the killing of autistic children by their parents. Dr. Karen McCarron, who allegedly killed her three-year-old daughter Katherine McCarron, is mentioned, as is Alison Tepper Singer, Senior Vice President of Autism Speaks an autism mother who, in the Autism Every Day video, talks about wanting to drive off the George Washington Bridge with her autistic daughter.

Both autistic and typical families have reacted with outrage and disgust to Singer’s statement — calling for her children to be removed from her custody and even drawing a connection between her and Karen McCarron. Thierry responds by calling Singer “gutsy and courageous.” She was expecting a call from Singer asking that the footage not be used. But that call never came. “You don’t say stuff like that — camera rolling — unless you are truly ready to play ball with the entire world,” Thierry says.

If most mothers of autistic children, Thierry responds, look hard enough within themselves they will find that they have played out a similar scenario in their minds. “If this is not your reality, then God bless you,” she says.

I am an autism mother and I have not played out a “similar scenario” in my mind.

I am more than familiar with the “autism reality” presented in the Autism Every Day video. My son Charlie is no savant—just learning to read some sight words and one great bike rider and ocean swimmer—-and he has done and does plenty of the behaviors (head-banging, biting, screaming on top of manhole covers in public places) that lead people to associate autism with words like “nightmare,” “devastation,” and “desperation.”

Is it really “gutsy and courageous” to say you have thought of killing your child? To kill your child?

Charlie and our family has been through every terrible autism experience—-the screaming at the doctor’s visits, the feces where they shouldn’t be, the bruises, the dwindling back account. You can read it on Autismland, every day.

As an autism mother, I share much with Thierry and Tepper Singer and the other parents interviewed in the Autism Every Day video and in Autism: The Art of Compassionate Living. I have seen a lot of darkness but it is always washed away with the light that shines from, that is, Charlie, my beautiful, precious, and happy autistic son. Of course we need to show compassion for parents who have difficult lives and have made sacrifices for their autistic children, but the majority of our compassion—our concern—needs to start with the autistic child, with autistic persons.

Otherwise, we are only reinforcing myths and stereotypes about autism.

And, as I wrote on Sunday, “Desperation” should not be a “fact” when raising a disabled child.

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  • weary-worn

    Umm, Theirry needs to seek professinal help – STAT.

  • http://momnos.blogspot.com mom-nos

    “If most mothers of autistic children, Thierry responds, look hard enough within themselves they will find that they have played out a similar scenario in their minds.”

    Are you KIDDING me? This is outrageous and offensive. How DARE she try to speak for me? Despicable.

  • http://www.notdeadyet.org Stephen Drake

    Kristina,

    Please email this blog entry to the author of the article, Jennifer Liss. I noticed her email address is linked at the end of the article.

    But I need to save that quote from Thierry the next time someone tries to tell me that Autism Every Day *isn’t* promoting the idea that thoughts of murder are normal for parents of autistic children.

  • http://disstud.blogspot.com Penny

    Seems to me that if strangers toting cameras and lights showed up unannounced at ANY home with small children, whether or not autism is in the mix, they’d be likely to see tantrums, and unvacuumed floors, and toothbrushing struggles, and frazzled-looking moms. (We can’t all look like TV anchorwomen while we do laundry or make sandwiches; unstyled hair is not, in itself, evidence of tragic stress levels.)

    And surely there’s a huge difference between having a terrible fleeting thought and saying it out loud, on camera, in front of your kid, for wide distribution.

  • http://www.autismvox.com Kristina Chew, PhD

    Emailed the links to Jennifer Liss.

    A shudder goes down my back whenever I read some of the quotes I included in this post.

  • weary-worn

    Kristina: You might want to put your links on this wiki page and make contributions as you see fit. Just a thought.

    http://en.wikipedia.org/wiki/Autism_Every_Day

  • Mike McCarron

    The article said “gutsy and courageous”, not so, not even close.

    Sit outside of a school for autistic children as you wait to pick up a loved one, notice that each Mom greets the child with a big huge as they buckle them into the car. Not just one Mom, they all greet the child, as the article said “it is almost as if they are finishing each others sentences”. The child may have only been in the school for 3 or 4 hours of therapy but the Moms are happy to see them. They smile, nod and are then off to their next stop.

    They do this everyday; with a smile and a hug. That is gutsy and courageous. They are not on the edge of some horrible crime. They are Moms that love their children; they don’t deserve to be type cast as anything but good Moms.

  • http://www.autismvox.com Kristina Chew, PhD

    Mike, what you write reminds me of one parent I used to wait outside the door of Charlie’s school with. I can never forget how this dad’s face looked—so hopeful and loving, so gently sad when hearing that his child had struggled—or how he’d kneel down and just hug him. He was the only dad among us moms to pick up his child, every day (I think he started his work day very early).

    A good, good dad—a great autism parent—-indeed.

  • http://www.autismvox.com Kristina Chew, PhD

    Weary-worn, thanks for the suggestion about the Wikipedia page—I added the link to this post, for a start.

  • weary-worn

    Thanks for adding the link there Kristina.

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  • KathyIggy

    I am one of the outraged parents who posted on ballasexistenz–how can Ms. Thierry speak for me? I guess I’m not “courageous” or “gutsy” since I have never had murderous thoughts, or because I’m obviously repressing thoughts I must have, according to these video producers.

    It’s like the theme here is questioning how ANYONE can be happy without a “perfect” child.

    Parenting, whether a special needs child or not, is hard work; sure, at times my husband and I think back to those childfree days in an idealized way.

    But when my daughter Megan backs into me for a hug (she doesn’t like to be approached from the front) or I see her smile when spinning on a park ride or bouncing on a trampoline, how could I ever trade this? I have learned so much about myself since she was born in 1995 and can’t imagine the world without her. She knows I will always be on her side, and she, in her own way, is on my side too.

  • http://www.autismvox.com Kristina Chew, PhD

    And we’re on Megan’s and your sides, too!

    Charlie does the same backwards hugs, without moving his arms.

  • http://lilwalnutbrain.blogspot.com/ Attila the Mom

    Thanks so much for writing this. Beautiful job. I cannot begin to tell you how much I resent others speaking for me.

    Never in a million years would it have crossed my mind to end the life of my son.

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  • Phil Schwarz

    “If most mothers of autistic children, Thierry responds, look hard enough within themselves they will find that they have played out a similar scenario in their minds. “If this is not your reality, then God bless you,” she says.”

    Well, let’s look on the bright side: that must mean that there are a *lot* of us out here blessed by God.

    Too bad the few of *them* are the ones with the financial and media clout — and *arrogance* to claim to speak for the rest of us.

    – Jeremy’s dad

  • Nerdmaster

    You people must be living in a dream world. For starters, I read the statement as Thierry being gutsy/courageous for ADMITTING SHE WAS HAVING A PROBLEM!

    As for the desire to harm one’s child, I personally have no *desire* to harm my child, but when I get frustrated, I can’t claim I’ve never wanted to make my kid calm down and be quiet, whatever it took. I didn’t DO ANYTHING, but having an angry, wild thought? Yeah. Hell, that happens to many people with normal kids.

    I’m a realist. I know human beings can be stretched beyond their limits, and I will most certainly applaud those who seek help before they get to that point. I only hope those of you in denial never actually have to watch your child forcefully smashing his head into everything around him until he’s breaking through the walls, refusing to eat, drink, and sleep (beyond the minimum to survive) for literally weeks on end, losing weight by the day, beating himself and his younger sibling into hospitalization. God knows what you’d do if you actually experienced a full month in which your child did nothing but hurt himself and others. I wish you the best of luck.

    As for myself, I may not be proud of it, but I know when I’m through with my child. And I’m damn glad I have the capacity to admit when I am done, and have to tell my son, “I’m sorry, but I can’t be around you right now”. He’s gone to sleep screaming and crying, slapping himself until his face was bruised. But staying in the room with him is sometimes just not an option.

    My son has Tuberous Sclerosis, Autism, Seizures, general developmental delays, and can neither speak nor understand most of what we say to him. He cannot perform most actions that require fine motor skills, and every day is a challenge, as his only form of communication is to hit and bite. Yes, he’s been in therapy (still is, though it’s now the public school system, so I think the majority of his learning is through us), yes we’ve tried pecs (as well as variations thereof). I would not trade him for the world, but I also wouldn’t pretend that raising him isn’t the most difficult task my wife and I have ever undertaken.

  • http://www.autismvox.com Kristina Chew, PhD

    Thank you very much for commenting here, and for telling us about your son.

    All that you describe I have lived through and I am ready to live through again. I am up right now because I just had to scrub my bathroom from top to bottom after my son had a big accident in his sleep (the bathroom cleaning occurring after, of course, showering and putting Charlie back to bed).

    I more than appreciate learning about your experience and thank you again for writing here.

  • Didi

    I watched the film and at no time did I feel it was saying that autism is an OK excuse to kill your child. Allison Singer was despondent and had dark thoughts about her situation. Listening to her I never got the impression that she would ever act on those thoughts or that she thought it was “OK” to kill her child.

    Many of you are crucifying Allison Singer and the film’s producer because she described her feelings during a severely low point in her life. Why shouldn’t be allowed to express it? Would pretending it never happened be better? If anything her willingness to be open about it might help someone going through the same thing to understand that they can get through it.

    Yes, the film was one sided in how it presented autism, but it was truthful to that one side. The point of the film was to show the day to day struggles that parents of autistic kids face. The producer could have included upbeat things as well but that would have made for a longer film and she probably wanted to remain focused on one aspect of the subject rather than doing a broad survey. Surely someone else will make another film that shows another perspective. That’s a good thing. All information should not come from a single source.

  • http://www.rettdevil.com Kassiane

    If they’re going to call it “Autism EVERYDAY” they have a responsibility to be balanced.

    If they want to pull the little pity party stunt they did, then they should call it “woe, woe, the dark side of autism” or something fitting. What they showed was one facet of a set of dice that would make any serious role playing geek drool.

  • http://www.autismvox.com Kristina Chew, PhD

    Thanks, Didi, for commenting here. Do you have an autistic child?

  • Didi

    Kristina,

    Yes. I have a 12 year old with autism. I have experienced a number of the issues brought out in the film – running into the street, very late to toilet train, major meltdowns at home and in public, lots of people making comments to me about my child. Still I have it a lot easier than others as my child is pretty high functioning. There’s no way I can fault any of the women in the film for saying what they did. How can I possibly judge them?

    Kassiane,

    Sorry, but I don’t think filmmakers have a responsibility to be balanced. Newscasters, yes, filmmakers no. I didn’t think it was a pity party, just people relating how well (or not) they were dealing with a constant source of stress in their lives. I didn’t agree with the woman who said her son would never get married. She’ll see in time as he matures that that is probably not the case. Still, that is her reality now and she is trying to face it. I felt that each of the mothers shown in the film were working very hard to help their kids.

  • http://www.rettdevil.com Kassiane

    NTs are a constant source of stress in my life because of the way they talk about people like me as though we are nothing but horror, a burden, train wrecks, a catastrophe, a tragedy. They tortured me at home and in school, with malice.

    As far as I could tell up until I was 21 there was not one redeeming thing about the people around me-kinda like they were talking about their kids.

    So where’s my “Neurotypicality Everyday” video that shows THAT?

    Oh wait. I don’t have NBC backing ME.

  • http://www.autismvox.com Kristina Chew, PhD

    Kassiane,

    I think your posts about NT teenagers speaks more than well to this—-

    Didi, thank you very much for sharing about your son—12 is just around the corner for us.

    I think the Autism Every Day video, due to its being widely disseminated, has generated a lot of discussion (for the better) and, certainly, a lot of strong feelings. And, perhaps even more than the mention of a mother thinking of driving off a bridge with her daughter, it is the mother’s autistic daughter being in the background while this was said that has been a point of contention (to understate the matter).

    My own son Charlie has never been considered “high-functioning” (though I prefer not to use that term, or “low-functioning) and we have had plenty of tough, tough moments and days. Charlie struggles to learn so many things and has suffered through a lot; having him here among us is a great, great thing.

    Thank you again—

  • Didi

    Kassiane,

    I just wanted to note that both my husband and I feel that we are on the spectrum. Working with my son has taught and helped me so much. I also feel that we are able to understand what he is going through to some degree because of what happened to us in our childhood. Still, he is more affected by autism than we are and at times I am clueless as to why he behaves a certain way. I just picked up the book “Freaks, Geeks, and Asperger’s Syndrome” which was written by a 13 year old Aspie. I’m hoping it will give me some insight to help my son through that God awful time known as puberty. I just shudder saying the word.

    In an effort to short circuit the NT cruelty our son may face, we have educated his class and teachers on autism and have given them suggestions on how they can help if they want. The number of kids stepping up to give him assistance has been amazing. So far he’s had a very positive experience at middle school. Much better than I can say for myself.

  • http://www.autismvox.com Kristina Chew, PhD

    Thanks, Didi—-what kinds of presentations, information, etc. have you passed on to your son’s teachers and class that has helped? At my son’s school, some 30 students volunteered to be peer models —- some message must be getting across.

  • Didi

    The teachers were given a formal presentation by someone well versed in children with autism. In elementary school we were able to have the APE teacher come into the class and give a presentation. In middle school it’s a bit harder because they have 7 classes they rotate through. Mostly it is done informally with the peer mentoring group, but I’ve also told his aide to be upfront and honest if anyone comes up and asks “What’s up with Mike?”. She gives them suggestions on how they can help out. We mostly talk about behaviorial issues and why they happen, as well as explaining how he views the world differently. There are several autistic kids at the school this year so indirectly the kids and teachers are learning about the wide scope of the spectrum.

  • http://www.autismvox.com Kristina Chew, PhD

    Realy interesting—–hope the school continues to work out for Mike.

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  • MStewart

    Nerdmaster Says: October 24th, 2006 at 1:22 am. Hey Nerdmaster, many of my walls have been destroyed too. I’ve had to rebuild my house a couple of times and spend myself into $100000 of debt to bill collectors in order to just provide a normal home for my family. My son was slapping himself for 2 straight weeks recently. Maybe 1000 slaps per cheek a day. That could be a low count. The skin on his face started to look more like the skin on the bottom of your heel. I get impatient with many parents with their little issues with their children. I can’t believe how easy life is for most people. They have no idea how good they have it. It’s a difficult task that’s for sure but at the same time just the experience and the effort we give to our kid makes you and I 100% tougher then most. I now view many people around me as weak. I never felt that way before enduring what my wife and I have gone through these past 12 years.

  • Micki

    When I was pregnant with my son (who is now 6 and has asperger’s), I asked my best friend (mother of 4 kids) if having a baby was as wonderful as it seemed. She emphatically said “No” and proceeded to tell me all the horrible things about the first six weeks, from the cramps and bleeding, the mood swings, the colic, the sleep deprivation…and I was not happy to hear it.

    Then I had my baby and discovered that my life had turned upside down. It hit me like a ton of bricks, that no longer could I just live for myself but I was responsible for a little baby for 24 / 7. I was tired, sore, cranky, unsuccesful at breastfeeding (and beating myself up about it), worried about everything… and when she called I was able to vent to her. I said “I want my old life back. I want to take him back to the hospital.” She knew I was venting. She laughed and I did too. But we could be HONEST with each other. I didn’t have to oooh and aaah and gush about how much I Loooved my baby. It was nice to be able to say “this sucks!”

    But I did and do love my baby, like I’ve never loved anything else in my life. I don’t want my old life back (well, not always…;-)…I love my children and if anything happened to them I probably would drive myself off a bridge because what would be the point of living.

    Motherhood presents us with strong emotions. Good and bad. Let’s not beat up this woman who expressed one of the bad ones.

  • http://www.notdeadyet.org Stephen Drake

    Micki,

    this isn’t just some woman venting frustration.

    It’s a media-savvy professional with lots of connections and power *choosing* to deliver this message as widely as possible – on Imus in the Morning, for starters.

    The video and her statements were intended to influence public opinion and policy.

    The responses here are not the ones Tepper Singer wanted, but she is in no position to complain, since she chose to tell these stories to get emotional reactions from people.

    –Stephen

  • http://www.autismvox.com Kristina Chew, PhD

    Thanks so much for writing here, Micki, and for your honesty. I think that some of the fervor of the remarks posted here stems in part from the widespread dissemination of Singer’s comment (the Autism Every Day video being still viewable on the Autism Speaks website), as well as the presence of her daughter in the background as she spoke.

    And yes, motherhood opens one to a new and powerful kind of love indeed.

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  • isis

    I do not have an autistic child, although I have been in a situation to provide child care to several autistic children. That alone was a heartbreaking experience for me. Coping with it on a daily basis makes all of you stronger people- but is it possible that not everyone was as emotionally healthy as you when they had children to begin with? Certainly there are some people who are better equipped than others. I don’t agree with Theirry that all mothers would find those thoughts if they were honest enough, but it must be admitted that some parents would probably still have homicidal thoughts with “normal” children. I still think the filmmaker chose subjects to emphasize her points, which is at the least unethical in the way it leads us to think about things. However, I get tired of people who talk about autistic children like they’re all superheros with magical mathematical or musical genius. Certainly none of the children I ever cared for were. It’s probably better that the public understand the worst of the daily routine so they can stop judging what they see in grocery stores and restaurants.

  • Cindy

    Well, my little guy is five years old and the love of my life! He was diagnosed at three with autism as I knew he probably would be. I coud tell something just wasbn’t right. Anyway, I could not imagine one day without my son. Though sometimes I wish he would just disappear for a while, I always feel guilty for feeling that way when he decides to give me a hug and kiss and a great big smile! It’s not his fault, it’s not mine. We grow together and learn from each other everyday. No bed of roses has it been. And I am sure I will face more difficult times, but it’s all worth it!

  • http://www.autismvox.com Kristina Chew, PhD

    I echo your sentiments—-the difficult moments have been difficult but every moment is always worth it; my son is always worth it.

  • Phil Schwarz

    My autistic son is not a genius or a savant. But he doesn’t have to be, for me to love him, or even for others to like him.

    When I was an undiagnosed Aspie kid, there were significant stretches of time when I thought the only thing that contributed to my self-worth was my intellectual “giftedness”. Not a good way to be.

    – Phil

  • lauren thierry

    OK Kristina, this has been a long time in coming. Unlike some of the large, powerful autism organizations, I do not have a PR firm that can “correct” the “misinformation” out there re the making of, or the intentions of, the film, “Autism Every Day.” I am the film’s director, producer, writer, etc. I’m also an autism mom w/2 other kids. I respect you and your faithful readers very much, whether they love or hate my film…or me. I just know you don’t have all the facts. I have much to say but have never said anything publicly. Maybe now is the time. You have my email address. We live pretty close to each other. I’d say, “Let’s have lunch,” but all my friends know I never have time to eat. So let’s just meet sometime. I look forward to finding some (a lot?) of common ground. There is much to say that I have not, for reasons that may surprise you. You pick the time and place. I will be there. You might even like me, my fellow mom in the trenches. Best, Lauren Thierry

  • http://www.rettdevil.com Kassiane

    Autism Speaks won’t fund you a nanny for a day? They pay your buddy Alison $150K to bitch about her life. They don’t pay you equally to film their propoganda?

    (nope, no sympathetic ear here. You can HEAR autism ACTUALLY speaking, at least my experience thereof, linked from one of Kristina’s posts)

  • http://www.autismvox.com Kristina Chew, PhD

    Lauren, I would much like to learn more about the film and the making of it; there is a lot—too much—to talk about.

    This is a link to Kassiane speaking at Fordham University in October 2006.

  • Amanda

    Lauren, I got an email from my own mother, one day, trying to reassure me that she had never once thought of killing me, that I was recommended by a doctor for abortion and she immediately turned that down and has always wanted me and never stopped wanting me.

    Do you know what it’s like when your own mother feels that she has to reassure you that she has never thought of killing you?

    Your statements made her think she had to do that. They made her think that maybe I’d believe you. That maybe I’d think back on the hell we often encountered when I was growing up — including the point at which she was threatened with having me forcibly taken away from her as a hopeless case who’d be better off in a state institution for the rest of my life, a point at which I was a teenager large enough to hurt her and my dad and running off at all hours of the day trying to get away from what seemed to me an impossible situation, a point when I was actively losing ground as far as anyone knew rather than gaining it, a point which had to be worse than the “threat” of being in an “overcrowded” classroom smaller than any classroom I’ve ever seen in my life — and wonder if she wanted me dead.

    I did not, in fact, think that. But the fact that she thought she had to reassure me about that speaks volumes about the impact of statements like the ones you have made, on families like mine.

    Would you ever want to meet me?

  • Ms. Clark

    Gosh, Ms Thierry could do a documentary about Amanda Baggs and other autistic adults and call it, “Autism Every Day.” Uh, no, that one is taken…

    I’m sorry that “glib” is a word that is associated with Scientology, because “glib” is a word that seems to fit Ms. Thierry’s breezy, “Poor me, aren’t I charming? Let’s do lunch!” comment.

  • Chopped Liver

    Gee, Lauren, you publicly state that you have “much to say” and that “now is the time to speak publicly” to provide “all the facts” about your film and your motivations for making it, but then you suggest that the best way to do that is in a private tete-a-tete with Kristina? How about instead sharing “all the facts” with the rest of the world? Better yet, how about displaying a little humility? If you think you need a PR firm or an advertising budget to respond to criticism of your work, you’ve been hanging around too many bigshots for too long. It doesn’t cost a dime to apologize to people you have offended with your film and acknowledge the reality that you exercised massively poor judgement in letting your buddy Alison vent her spleen onscreen so she can pull in a few more bucks for her already massively buck-heavy organization.

  • http://www.kevinleitch.co.uk Kev

    860 people and counting – autistic people, parents of autistic people, friends of autistic people – don’t like what your film said or how you said it Ms Thiery.

    With all due respect to Kristina, this is an issue very much wider than one person listening to another over Ceaser salad. There’s a whole community who were/are horrified by what you said ‘on their behalf’.

  • Julie

    I would love to hear what you have to say. I would love to know why it was decided that it was representitive of an Autistic parent to want to kill their child instead of a depressed one. I have never had those feelings. The parent who feels that needs help for themselves more than their child at that point.

  • Phil Schwarz

    It’s a shame that allegations like Ms. Thierry’s that all parents of autistic kids sometimes wish to kill those kids, and that those who claim they don’t have such wishes are in denial, are not actionable as libel or slander.

    “Autism Every Day” doesn’t even *begin* to speak for me. It seeks to establish solidarity and identification among parents of autistic kids along the lowest possible common denominator, and quite frankly sets our cause back much more than advances it.

    We don’t need pity parties. We don’t need causes and “cures”. We need *support* for our kids to grow up and be the best they can be. *That’s* where Autism Speaks’s considerable resources and clout could really do some good.

    When their agenda — *and* their public relations approach and collateral — move in that direction, and when there is significant policy-making participation in its governance by adults on the spectrum, I will support Autism Speaks.

    Until then, it does not speak for me. Nor for the vast preponderance of families of autistic people I know and associate with.

  • http://mikestanton.wordpress.com mike stanton

    Poor old Lauren!
    She has time to make movies but no time to eat. She cannot tell her side here on your blog but she has so much to tell you in private.

    If she does spill the beans, do tell, Kristina.

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  • Michele Purcell

    OK, I guess I am in the minority here, but I really liked this movie. It addressed many of the issues my husband and I deal with every day with a moderately autistic younger son (5) and an older son (8) with ADHD and PDD-NOS. We love our beautiful boys more than anything in the world, but know every day that life is now much more difficult than we had ever imagined. I don’t think it was ever stated that this movie was speaking for all parents with autistic children. I think Ms. Thierry wanted to increase awareness and also increase the amount of funding for autism research, and she seems to have done this quite effectively.

  • http://www.rettdevil.org Kassiane

    News flash:

    There are other ways to “raise awareness” than gigglingly talking about killing your kid. It’s like the psychological equivalent of streaking, only…Manson style.

  • http://www.autismvox.com Kristina Chew, PhD

    Definitely effectively—–certainly many families have difficulties (that is an understatement, perhaps). I think there is some question about the sort of “awareness” and “understanding” suggested in the video, especially in its original 13-minute version, which was widely, and quickly, disseminated on the internet, and which Autism Speaks continues to promote.

    Life with Charlie, 10 years old and minimally verbal and a history of numerous “textbook behaviors” (most of which he is learning to manage thanks to lots of careful teaching) is not easy and far different from what I had thought it might be—different in an ultimately good way.

    Best wishes—

  • Michele Purcell

    I watched the movie several times, and I don’t think she was giggling about it.. I think she had a thought as a knee-jerk reaction to a very stressful situation and it was something she would have never done, more an expression of her feeling utterly hopeless at the time. That’s just my impression though….

  • http://www.autismvox.com Kristina Chew, PhD

    I hope Ms. Singer can someday clarify her remarks. Michele, I much appriecate your writing about your impressions here……..and Kassiane too—

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  • http://none Benedetta Stilwell

    No one has any comment since a year and a half ago? Did you all not hear that Singer betrayed the autism speaks and all of us that have autism children or are autistic. No one heard about it?

  • http://none Benedetta Stilwell

    I am 52 years old, and over the years I have tragically found out a few things that I don’t understand why the medical community or government can’t figure out too. My son has autism, and epilepsy, my husband had a mitrochondrial disorder not inherited but environmental induced (according to Emory clinic in 1990)now it has turned into something else that is an autoimmune disease, maybe of the connective tissures or blood vessels. My daughter had kawasakis disease at two years old and now she is 28 and her doctor has pointed her toward a rheumatologist. She takes medicine for depression and for attention deficiet but she is top of her class and has a double major biology and nursing.(and she can spell deficit) We also have two identical twin nephews with autism, they recently both had a rash on their stomachs (indication of vasculitis) What do they all have in common besides genes, and probably vasculitis? A DPT shot that is what! Except for my husband, he reacted right away to a tetanus shot, and three years later the medical community gave him another one- then he found himself at Emory Clinic. THE DPT SHOT is diptheria, whooping cough and tetantus and these are not put together randomly, they have similiar antigens : proteins from the bacteria that our immune system recognizes and then responds to by producing stuff to destroy them. Vasculitis is what I think the whole thing is. Inflamation of the blood vessels. Either of the brain, the heart, the stomach which ever blood vessels are involved. Inflamed by a vaccine. Want More proof MY son reacted to his third DPT shot six hours after he received it and it was not the first time he reacted to one, he reacted to his second one too but not horrific like his third. His third was a stroke, and if I had not been watching his every breath I would have missed that thirty minutes he was in distress.I would like to thank Dr. Stanly Block for his advice and his bulling that destroyed my child’s life. One more thing in 2003 my son was finally dignosed with epilepsy he was 17, and I knew it for YEARS! What gave it away was his falling down, jerking- having seizures. Once again the medical community flunked and it took them 17 years to get it right. The doctor finally tried to put him on DEPOKOTE the same stuff John Trovolti’s son was on. I refused, I had had enough, I stood up to the Doctor-God and followed my instinct. We came home with no seizure medicine and my husband went ballistic, kepted asking me why. I told my husband when his mother went on Depokote I noticed she became worse and died. He went to the computer looked up his mitrochondrial disorder called oxidation phosalation(spelling is wrong) and it said depokote was a bad thing for this disease. My son is now on Keppra and he is fine, no seizures and he has his driver liscense and he is going to a small community college and passing (barely and with my help) and he is funny, but very quiet and of course no social butterfly. Too much information you say, not good at spelling too you say, so maybe I am a looney. That may be but I have lived it and so that is how it is. I do not want anyone to follow in my shoes.

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  • nursing tops

    Thanks for the informative post. I enjoyed reading it and look forward to more posts in the future.

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