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 Many if not most autistic kids are not merely withdrawn and silent, they are often constantly, violently—often self-destructively—acting out.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.
Lauren told me her research indicates that the predisposition against coverage for autistic children stems from the legacy of quackery perpetrated by Bruno Bettelheim, the Freudian psychologist. Bettelheim, with traditionally Freudian misogynist arrogance, blamed mothers for their children’s autism, claiming they withheld love and warmth, cruelly calling them “refrigerator mothers.” As a result of this discredited theory, insurance companies had a predisposition to look at autism not as a medical, neurological disorder (which it is, and which they’d have to cover), but rather as some psychological problem that’s the fault of bad parenting.
The fraudulence of the “data” Bettelheim literally fabricated to found his “analysis” of autism on was exposed by my old friend Richard Pollak in his important book The Creation of Dr. B. Bettelheim’s legacy wasn’t only the impoverishment of autistic families, but bestowing upon these already beset and besieged women a burden of unwarranted shame and guilt. The author Carolyn See, grandmother of an autistic child, wrote: “If that man weren’t already dead, I swear I’d kill him, then sentence him to ten thousand years in hell for each tear he made those innocent mothers shed.”
But it’s not just the quackery, not just the insurance issue, the misdiagnosis and the money that’s so disturbing. It’s the nature of the disease itself; it’s like an unending emotional torment that transforms one of the most joyful events of life, the birth of a child, into an ongoing lifelong nightmare.
People you know, people just like you, fellow New Yorkers (perhaps as many as one child in 166 has an autism-spectrum disorder, according to the Centers for Disease Control), suddenly, when they realize what they have on their hands, find their lives transformed by the nature of the disease that their children are suffering. Find themselves in the midst of a quiet horror story. Find themselves living on another nightmare planet from those around them. And often, like Jim and Lauren, find an amazing courage and a heroic will to fight back.
But they can’t do it alone. What is to be done to help them? There are two steps that can be taken right now. Pass the New York State legislation that would outlaw insurance-company discrimination against autism families.
According to one advocacy group, “Assembly Bill A 699, introduced by Assemblywoman Audrey Pheffer of Queens, and the identical Senate Bill S 784, introduced by Senator Charles Fuschillo of Nassau County, will end the injustice. The bill was introduced two years ago, but the insurance lobby beat it back …. This legislation will [require] coverage for autism spectrum disorders to be subject to the same terms and conditions applicable to the treatment of other disorders.” Make sure your state reps are behind it in this election year.
The second thing that can be done is to pass the federal “Combating Autism” bill this session. New York Senators Hillary Clinton and Charles Schumer are among the bipartisan sponsors, but it’s no done deal. Pressure on those who haven’t announced themselves as sponsors is important to get a vote this session.
As described in an update from the Autism Speaks organization, “The Combating Autism Act of 2005 would authorize $176 million annually over the next five years to combat autism through research, screening, intervention and education efforts, in effect doubling the current National Institute of Health’s (NIH) autism funding.” The act would “increase resources in every state for the early diagnosis and treatment of children with autism—perhaps the most important thing that could happen, short of a cure.
“Other elements of the Act would provide:
• Twice the number of NIH Centers of Excellence Programs for research on autism
• Collaborative National Institute of Child Health programs of Excellence in Autism
• Funds for the Center for Disease Control epidemiological surveillance programs
• Establishment of environmental health research programs.”
(As for the controversy over whether thimerosal, a mercury-containing preservative once common in many childhood vaccines, plays a role in autism, Lauren and Jim told me they believe more research is required. Their child began to show autistic symptoms before vaccination, but they’re dismayed by the attempt to add a rider to a homeland-security bill slipped in by Senate Majority Leader Bill Frist to insulate drug companies from liability.)
TO MY SHAME, THINK, IN SOME WAY, I looked away from the full extent of what Lauren and Jim were going through. In my defense, I’d say it’s not uncommon. Not that they’re unequipped to fight it themselves: There’s something about this disease that brings out a fierce response, especially from the mothers involved. Like the ones in Lauren’s film who say over and over again, in one way or another: “No surrender.” But they need our help.
I was particularly struck by something that Suzanne Wright, the wife of the NBC chairman, said about this. When it came calling on their family, she said, “Autism knocked on the wrong door.” Same for Lauren Thierry. Wrong door.
Help them kick it to the curb.