06-01-2006, 12:24 AM
More BS about Autism Speaks 'Autism every day'.
Uses of Disenchantment:TV Anchor-Mom Fights Autism and Films It
By Ron Rosenbaum
I want to talk about something barbaric and something beautiful and heroic. Also about a buried Freudian scandal involving Bruno Bettelheim and refrigerators. Let me explain.
It was prompted by the ordeal my longtime friends Lauren Thierry and Jim Watkins and their son Liam have been going through.
Lauren and Jim are two exemplary New Yorkers, people blessed with talent, smarts, charm and kindness; Jim’s a much-admired anchor for the WB-11 News at Ten, Lauren was a rising star anchoring financial news on CNN for five years. I say “was” because, five years ago, she abandoned her job to care full time for Liam after he was diagnosed with autism.
I used to spend a lot of time on the phone with Lauren, gossiping about people in the media. But after the diagnosis, most of my conversations with Lauren were conducted from her car phone as she was driving Liam all over the tristate area, telling me about her maddening search for a decent school and therapy for her child.
It’s a reminder how fate can step in and suddenly, utterly and terribly turn the enviable lives of people you know into a nightmare—and a challenge. But in a way, I didn’t fully understand until I saw the short documentary film Lauren made about the lives of mothers of autistic kids.
The film, Autism Every Day, has caught on. On May 10, Don Imus played it in its entirety on his MSNBC morning show; NBC chairman Robert Wright and his wife, Suzanne—their daughter Katie has an autistic child—are said to be taking a longer version of it to Sundance. And Suzanne Wright and Mr. Imus’ wife Deirdre hand-delivered DVD’s of it to every member of Congress, because there’s now a bill pending, the Combating Autism Act—but more about that later.
First I want tell you about the film. It’s less than 15 minutes long, but it’s a killer. It will break your heart; it will make you cry—I guarantee it. It’s skillfully done, in a low-key way that recognizes there’s no need to hype the emotionalism. The matter-of-fact-ness is enough, almost too much. The dailiness is the point. (You can watch it yourself at www. autismspeaks. org/sponsoredevents/ autism_every_day.php on the autismspeaks.org Web site.)
The film consists mainly of interviews with mothers (and scenes of them with their autistic children), mothers whose lives have been utterly transformed. The situation of these mothers is just unrelieved, unrelenting. Many if not most autistic kids are not merely withdrawn and silent, they are often constantly, violently—often self-destructively—acting out. There’s no break from the nonstop attention and protection these children require. The mothers describe incidents in which the kids have escaped their houses and heedlessly run out into traffic.
And it’s a lifelong condition. So far, at least, there’s no hope that it will ever cease, no agreement on cause and little agreement about treatment, although almost all of the treatment regimes are hideously elaborate and totally time-consuming. One of the most devastating segments of the film is the one in which mothers offer variations on “I can’t die” or “I have to live forever,” because no one else will know exactly how to care for their kids.
Public schools with their special-education classes are almost without exception utterly unequipped and under-funded to provide the care needed.
What’s beautiful about Lauren’s film is the love these mothers radiate, the strength, humor and hope they display despite it all. Yes, other mothers whose children have other afflictions feel similarly powerful love and pain. What’s particularly barbaric about autism is a society—and a health-care system—that does nothing for them.
Recently, I had dinner with Lauren and Jim (who has been working his butt off on behalf of the cause as well—he’s worked with Mets C.O.O. Jeff Wilpon and executive vice president Dave Howard in rallying the whole Mets organization for the kids). Over dinner, they told me some good news and some bad news. The good news was that after years of trying one school of therapy after another, they’d finally found a method that was producing some slow, painstaking but heartening progress for Liam, something called Applied Behavioral Analysis. It’s incredibly demanding, repetitive, and time- and labor-intensive, but they’ve seen hope for the first time.
The bad news was that the combination of therapists, special schools and other caregivers was costing them $150,000 a year, and they’ve had to adjust to substantially altered living circumstances for a family that includes their two other non-autistic children, their twins Jamie and Luke. (Medicaid helps some families, but the fact that we have no national health insurance for all is a scandal).
All because—and this is the barbaric part—most insurance companies won’t cover this, or indeed most therapies for autism. Imagine what this means for all the families who don’t have other means.
http:// http://www.observer. com/20060605/20060605_Ron_Rosenbaum_pageone_ronrosenbaum-2.asp
That film certainly made me feel like crying, because it was so nasty! :mad:
And if the ABA is so demanding and labour intensive, why on earth are they expecting small children to do it???
Uses of Disenchantment:TV Anchor-Mom Fights Autism and Films It
By Ron Rosenbaum
I want to talk about something barbaric and something beautiful and heroic. Also about a buried Freudian scandal involving Bruno Bettelheim and refrigerators. Let me explain.
It was prompted by the ordeal my longtime friends Lauren Thierry and Jim Watkins and their son Liam have been going through.
Lauren and Jim are two exemplary New Yorkers, people blessed with talent, smarts, charm and kindness; Jim’s a much-admired anchor for the WB-11 News at Ten, Lauren was a rising star anchoring financial news on CNN for five years. I say “was” because, five years ago, she abandoned her job to care full time for Liam after he was diagnosed with autism.
I used to spend a lot of time on the phone with Lauren, gossiping about people in the media. But after the diagnosis, most of my conversations with Lauren were conducted from her car phone as she was driving Liam all over the tristate area, telling me about her maddening search for a decent school and therapy for her child.
It’s a reminder how fate can step in and suddenly, utterly and terribly turn the enviable lives of people you know into a nightmare—and a challenge. But in a way, I didn’t fully understand until I saw the short documentary film Lauren made about the lives of mothers of autistic kids.
The film, Autism Every Day, has caught on. On May 10, Don Imus played it in its entirety on his MSNBC morning show; NBC chairman Robert Wright and his wife, Suzanne—their daughter Katie has an autistic child—are said to be taking a longer version of it to Sundance. And Suzanne Wright and Mr. Imus’ wife Deirdre hand-delivered DVD’s of it to every member of Congress, because there’s now a bill pending, the Combating Autism Act—but more about that later.
First I want tell you about the film. It’s less than 15 minutes long, but it’s a killer. It will break your heart; it will make you cry—I guarantee it. It’s skillfully done, in a low-key way that recognizes there’s no need to hype the emotionalism. The matter-of-fact-ness is enough, almost too much. The dailiness is the point. (You can watch it yourself at www. autismspeaks. org/sponsoredevents/ autism_every_day.php on the autismspeaks.org Web site.)
The film consists mainly of interviews with mothers (and scenes of them with their autistic children), mothers whose lives have been utterly transformed. The situation of these mothers is just unrelieved, unrelenting. Many if not most autistic kids are not merely withdrawn and silent, they are often constantly, violently—often self-destructively—acting out. There’s no break from the nonstop attention and protection these children require. The mothers describe incidents in which the kids have escaped their houses and heedlessly run out into traffic.
And it’s a lifelong condition. So far, at least, there’s no hope that it will ever cease, no agreement on cause and little agreement about treatment, although almost all of the treatment regimes are hideously elaborate and totally time-consuming. One of the most devastating segments of the film is the one in which mothers offer variations on “I can’t die” or “I have to live forever,” because no one else will know exactly how to care for their kids.
Public schools with their special-education classes are almost without exception utterly unequipped and under-funded to provide the care needed.
What’s beautiful about Lauren’s film is the love these mothers radiate, the strength, humor and hope they display despite it all. Yes, other mothers whose children have other afflictions feel similarly powerful love and pain. What’s particularly barbaric about autism is a society—and a health-care system—that does nothing for them.
Recently, I had dinner with Lauren and Jim (who has been working his butt off on behalf of the cause as well—he’s worked with Mets C.O.O. Jeff Wilpon and executive vice president Dave Howard in rallying the whole Mets organization for the kids). Over dinner, they told me some good news and some bad news. The good news was that after years of trying one school of therapy after another, they’d finally found a method that was producing some slow, painstaking but heartening progress for Liam, something called Applied Behavioral Analysis. It’s incredibly demanding, repetitive, and time- and labor-intensive, but they’ve seen hope for the first time.
The bad news was that the combination of therapists, special schools and other caregivers was costing them $150,000 a year, and they’ve had to adjust to substantially altered living circumstances for a family that includes their two other non-autistic children, their twins Jamie and Luke. (Medicaid helps some families, but the fact that we have no national health insurance for all is a scandal).
All because—and this is the barbaric part—most insurance companies won’t cover this, or indeed most therapies for autism. Imagine what this means for all the families who don’t have other means.
http:// http://www.observer. com/20060605/20060605_Ron_Rosenbaum_pageone_ronrosenbaum-2.asp
That film certainly made me feel like crying, because it was so nasty! :mad:
And if the ABA is so demanding and labour intensive, why on earth are they expecting small children to do it???
