* (angi_is_altered) wrote in ontd_political,

The Autism Debate: Who's Afraid of Jenny McCarthy? By Karl Taro Greenfeld

In person, surprisingly, Jenny McCarthy comes across as corn-fed cute rather than overwhelmingly beautiful. She has a common touch, and a woman even slightly more beautiful would struggle to connect as she does. When McCarthy meets a mom, when she spits forth a stream of profanity and common sense — the foulmouthed comedian from Chicago never far from the surface — she is there as a mother, not as a celebrity or starlet. That's what got her there, but that's not who she is once she's there. She speaks to so many frustrated, despairing mothers of autistic children because she is plausible, authentic. If you needed a woman to bring hope to these mothers, you couldn't ask for better casting than Jenny McCarthy.

We are sitting around a sushi-laden coffee table in the Sherman Oaks, Calif., headquarters of Generation Rescue, the autism advocacy group she heads. It's a gray, one-story house with white trim and a picket-fence-enclosed yard, across the street from the home she lived in for four years with her son Evan, 7, and John Asher, who is her ex-husband and Evan's father. She has converted the house into a state-of-the-art school for very young autistic kids, an intensive early-intervention program called the Teach2Talk Academy. The school is a model in many ways, not least because of its 1-to-1 teacher-student ratio and sparkling facilities. It's the kind of place she was desperate to get Evan into when he was first diagnosed with autism in 2005.

The lacerating pilgrimage that parents of autistic children know all too well, lugging their child from specialist to specialist, from program to program, seeking help, answers, a cure — catalyzed her mission. First McCarthy was a mother "finding a window" into her son. Then she became a mother who felt she needed to tell other mothers how she found that window. Those mothers have become her flock. She greets them all, here in Sherman Oaks, on her way through airport terminals, in restaurants, on talk-show sets; she will stop, nod, listen, proffer advice, give a phone number and tell these mothers, these families, to never give up hope. "Hope is the greatest thing for moms of autism," McCarthy says. "Hope is what gets us out of bed in the morning. I'm on a mission to tell parents that there is a way." 


McCarthy's way, however, is one that flies in the face of all credible research on what does and does not cause autism and whether it can be treated. McCarthy claims Evan was healed through a range of experimental and unproved biomedical treatments; even more controversially, she blames the MMR (measles, mumps and rubella) vaccine for giving her son autism. And yet research conclusively shows that vaccines are safe for children; just last month, the U.K. scientist who had published a study linking the MMR shot to autism was found by a British medical panel to have acted unethically. McCarthy says she does not believe all vaccines are bad — though she swears she will never allow Evan to receive another — nor is she saying you shouldn't vaccinate your child. Her position is more slippery but just as heretical to prevailing medical wisdom: do everything necessary to cure your child, no matter what the doctors tell you.

This message has won her a wide audience, based on her three best-selling books on autism. She has just completed shooting the pilot for a daytime talk show for Oprah Winfrey's TV network to begin airing later this year — which will be, she promises, yet another platform for her message. But her profile has also made her, among pediatricians, other doctors and many parents, a deeply polarizing figure. Though close to 80% of American children receive the standard battery of vaccinations, skepticism about their safety remains widespread, in part because of the antiscientific clamor of the McCarthy camp. Enough parents are refusing to vaccinate that some long-dormant maladies, like measles and meningitis, have re-emerged. Nonvaccination rates among kindergartners in some California counties have been reported at 10%. To McCarthy's opponents, from the public-health officials at the Centers for Disease Control and Prevention (CDC) to the pediatricians of the American Academy of Pediatrics, this makes McCarthy much worse than a crank: she's a menace to public health. 

But she can't be ignored. If the debate about vaccine safety is settled — vaccines don't cause autism; they don't injure children; they are the pillar of modern public health — then why are so many parents reconsidering vaccinating their children? The answer has to do with our era's strained relationship with scientific truth, our tendency to place more faith in psychological truths than scientific ones. McCarthy's emergence — the Playmate turned pseudoscientist, the fart-joke teller cum mother warrior — can make one feel nostalgic for the time when celebs turned up on talk shows only to hawk their flicks or books, not to promote explosive public-health ideas. But McCarthy says she is speaking the truth — her truth.

It goes something like this: in McCarthy's world, there is scientific truth and there is emotional truth. There is the fact of a mother looking into her son's eyes and knowing something has gone very wrong and the fact of about two dozen studies showing no link between vaccines and autism. There is the truth of the parents and the truth of the doctors. And she believes that some truths are more equal than others. "She's a mom," says her boyfriend, actor Jim Carrey. "That's what she is. That's her truth." It all sounds so reasonable, expressed by the charming, gamine Jenny McCarthy. And this is what makes her dangerous.

'Try Everything'
The Catholic girl from Chicago who got her start as a Playboy model was the second of four daughters of a steel-mill-foreman father and courtroom-custodian mother. She attended Mother McAuley High School. "It can be hard for the cute girl," she recalls. "I was blond, cute, broke. I was beat up. I was thrown inside lockers. I was burned with cigarettes. My hair was lit on fire." To earn money for college — she studied nursing at Southern Illinois University at Carbondale — she sent her photos to Playboy and was Miss October and eventually Playmate of the Year in 1994. Her subsequent career as a comedian and actress took her through MTV game shows, her own sitcom and various roles in B movies. She is now probably more famous as an advocate for her views on autism than she ever was as an actress, and it has given her a power out of proportion to her show-business success. 

In 2005, McCarthy's son Evan, then 2, began having seizures so severe he required repeated emergency hospitalization. McCarthy had noticed that Evan had some developmental delays, compared with his peers in a playgroup they attended, and he exhibited some atypical behaviors: arm flapping, repetitive actions and fixation on strange objects. She describes her panic at Evan's diagnosis in her memoir Louder than Words: "I wished to God the doctor had handed me a pamphlet that said, 'Hey, sorry about the autism, but here's a step-by-step list on what to do next.' But doctors don't do that. They say 'sorry' and move you along." McCarthy began to try almost every treatment that turned up on Google. Evan went through conventional, intensive Applied Behavioral Analysis (ABA) therapy as well as a host of alternative approaches, including a gluten-free and casein-free (GFCF) diet, hyperbaric oxygen chambers, chelation, aromatherapies, electromagnetics, spoons rubbed on his body, multivitamin therapy, B-12 shots and a range of prescription drugs. McCarthy says she made a deal with God. "Help me fix my boy," she prayed, "and I'll teach the world how I did it."

She believes she did fix her boy. A psychological evaluation from UCLA's neuropsychiatric hospital, dated May 10, 2005, was "conclusive for a diagnosis of Autistic Disorder," and yet here, running toward us on a warm California afternoon, is Evan, shouting out, "Are you here to play with me? When are we going to play?" McCarthy's boy is a vivacious, articulate and communicative child who seems to have beaten the condition. He is an inspiration, the fact of him as incontrovertible as any study done in any laboratory in the world. 

Or is this the truth? There are dark murmurings from scientists and doctors asking, Was her son ever really autistic? Evan's symptoms — heavy seizures, followed by marked improvement once the seizures were brought under control — are similar to those of Landau-Kleffner syndrome, a rare childhood neurological disorder that can also result in speech impairment and possible long-term neurological damage. Or, as other pediatricians have suggested, perhaps the miracle I have beheld is the quotidian miracle of childhood development: a delayed 2-year-old catching up by the time he is 7, a commonplace, routine occurrence, nothing more surprising than a short boy growing tall. It is enraging to the mother to hear that nothing was wrong with her boy — she held him during his seizures, saw his eyes roll up after he received his vaccines — and how can you say that she doesn't know what she knows? 

With the diagnosis of her son and the book she wrote about their journey together, McCarthy became the world's most famous parent of an autistic child. "I knew I was going to be the voice of the families when this happened," she says. "Because I had the platform. In my head, something said, 'You can get booked on talk shows.' If there was a purpose from God, he just picked someone who can get booked on talk shows. I just fell into this truth ... The only reason I'm getting this much attention is because I represent hundreds of thousands of mothers who have the same story." During appearances on Oprah, 20/20, Good Morning America, Larry King Live and other television shows, she decried what she claimed was a vast, profitable conspiracy to vaccinate children, which she said was responsible for the great upsurge in autism diagnoses. Often appearing with her boyfriend Carrey (who lives with Jenny and Evan), she glibly and with irate dismissal of the scientific evidence accused pediatricians and doctors of poisoning children and then withholding the treatments that could save them.

During her appearance on Oprah in 2007, she launched a typical fusillade: "What number does it have to be ... for people just to start listening to what the mothers of children who have autism have been saying for years ... I told my pediatrician something happened ... after [he was vaccinated] ?... Boom — the soul was gone from his eyes." Later, when Oprah read a comment from the CDC stating that the vast majority of the science to date did not support her assertion, McCarthy replied, "My science is Evan. He's at home. That's my science." 

Such statements could not have won over mothers and found such a ready audience if there weren't many who felt they were hearing someone state what they had long suspected. McCarthy may have been promoting her book, but she had inadvertently become the poster mom for a movement. "Jenny gave us a face," says Kim Stagliano, a mother of three autistic girls and one of the founders of the popular blog Age of Autism. "I feel like Jenny going public was pretty brave ... There is a certain personality within the Curebie community [parents who believe they can cure their autistic children], and that was who she was."

The biomedical treatments McCarthy espouses — and it is hard to find a controversial, novel or alternative treatment that McCarthy doesn't say has some merit — are often decried by mainstream pediatricians and other physicians and as being untested or unproven. Yet it is rare to find a family struggling with an autistic child that hasn't tried at least some version of one of them. While every illness brings forth unproven treatments, autism, because there has been so little progress in terms of finding a cause, much less a proven cure, has been a field replete with controversial therapies that lure in desperate parents. 

"Try everything," says McCarthy. "Hope is the only thing that will get us up in the morning."

Her critics, however, describe that as false hope. Paul Offit, chief of infectious diseases at the Children's Hospital of Philadelphia, has been outspoken in decrying the antivaccine movement and various alternative autism treatments in his best-selling book Autism's False Prophets. He categorically condemns McCarthy's message. "It's not fair to these parents," he says. "I think false hope is worse than no hope." 

The Autism Riddle
The history of autism treatments has been too often filled with false hope. There are 730,000 Americans under age 21 who have been diagnosed with autism. But for decades, autism was considered an exceedingly rare disorder and was viewed as a life sentence. In the 1970s, parents sought out a range of alternative and unconventional treatments. There was patterning (in which the autistic child was retaught to crawl), multivitamin therapy, bee-pollen therapy and various restrictive diets. There was the gentleman who claimed he had cured his son by hugging him a lot — he wrote a best-selling book about it — and others who claimed they had cured their child by teaching him or her to swim. There has been the facilitation movement, in which "facilitators" supposedly helping nonverbal autistic children type words turned out to be making the statements themselves, and the secretin controversy, in which parents paid thousands of dollars for a hormone believed to successfully treat autism before several clinical trials showed no actual impact. All of these cost parents small fortunes and years of anguish. And all of them are still being practiced by some segments of the autism community today. 

Yet it is important to remember that?the first and still the only treatment that has been shown to make a demonstrably positive developmental impact on autistic children started out as a somewhat radical movement. Behavioral therapy — involving methods, not so different from animal-training techniques, that are now known as ABA, PRT (Pivotal Response Training) and a host of other acronyms — was vilified by many, including what was then the mainstream of autism, when it started in the 1960s. After clinical trials produced positive results, it became the basic treatment for autism. But the success rate for this therapy remains painfully low. A recent study by University of Connecticut psychologist Deborah Fein shows that at least 10% of autistic children undergoing ABA can overcome the disorder by age 9, while others show more modest improvement. That makes for a depressing picture for most parents of autistic children.

And that's where McCarthy comes in. She is telling the parents that yes, your son or daughter can be healed. "I have three children on the spectrum," says Stagliano. "I have yet to really get one actionable piece of assistance from my pediatrician. They offer nothing. Nothing ... These treatments are filling a vacuum."

McCarthy's conviction stems from her having "recovered" her own son from autism. "Evan couldn't talk — now he talks. Evan couldn't make eye contact — now he makes eye contact. Evan was antisocial — now he makes friends," she explains. "It was amazing to watch, over the course of doing this, how certain therapies work for certain kids and they completely don't work for others ... When something didn't work for Evan, I didn't stop. I stopped that treatment, but I didn't stop." 

Well before McCarthy's son was diagnosed, that was the course most parents were following anyway. I recall my parents in the 1970s trying out a range of therapies and various diets for my younger brother Noah, a low-functioning adult autistic: everything from chiropractic adjustments to megavitamin doses to copper bracelets. McCarthy was the first celebrity to embrace this approach publicly and to hit the airwaves pep-talking mothers to never give up. That is what she tells those parents who seek her out here at Generation Rescue — and the 200,000 mothers she has met on her various autism tours and speaking engagements.

Of course, McCarthy is not a doctor. She really has only the one prescription: hope. And then parents should try every treatment out there until they find one that works. She is careful to avoid the word cure, always using recovery. "I look at autism like a bus accident, and you don't become cured from a bus accident, but you can recover," she says. 

The Persistence of Hope
It is precisely that word that makes her views incendiary. "Recovery" from what, exactly? The treatments promoted by McCarthy purport to treat an injury, specifically one to the immune or digestive system of the autistic child — and the agent that activists like McCarthy most commonly point to as the cause of the injury is the MMR vaccine. The antivaccine movement has by now gone through numerous iterations in trying to explain how autism happens. The latest alleged culprit is the sheer number of vaccines: at least 10 administered, in 26 shots, during a child's first 36 months. Each of these theories has been thoroughly discredited by scientific research, but that has done nothing to silence McCarthy and her Generation Rescue colleagues. "Come and see our kids," says McCarthy. "Why won't the CDC come and talk to the mothers, talk to the families? Then tell us there isn't a link."

For all her bravado, McCarthy prefers to cast herself as a voice of moderation. She claims her goal is to move the debate toward what she sees as the middle, where more research dollars are poured into alternative treatments and the search for an environmental cause. (A great deal of research is currently focused on finding a genetic cause.) She has backed off from her most heated rhetoric and says she is now not against all vaccines but is in favor of studying them further and modifying the schedule by which they are administered. The problem is that every study has shown there is no correlation between vaccines and autism and that the risk of injury from vaccination is far lower than the risk of disease from being unvaccinated. Alison Singer of the Autism Science Foundation bemoans the potential loss of research into causes and treatments for autism because of continued preoccupation with the vaccine issue. "I felt that 22 vaccine studies were enough," she says. "Given that we don't have unlimited resources, it made sense to say we looked at vaccines and found no causal relationship." McCarthy, she goes on to say, "has been very successful at bringing the politics into the science." 

McCarthy vows to continue her fight, spreading her truth, for "the rest of my life?... I would love to be on Stage 19, yukking it up as a Hollywood actress, but how could I not step up here and be the voice? And I'll continue to be the voice." It is impossible to overlook the larger and direct dangers inherent in her position on vaccines. Yet it is equally difficult to ignore the emotional core of what she is saying: Listen to parents. If doctors won't, then McCarthy will. While I was reporting this story, I talked to my parents about what I was working on. They have been living with autism for the past 40 years. My father listened and then told me to ask McCarthy about a specific alternative therapy he had heard about and was interested in trying on my 42-year-old brother Noah.

I thought about this as I was driving out to the San Fernando Valley to see McCarthy and realized she was right: parents will never stop hoping.

Karl Taro Greenfeld is the author of Boy Alone: A Brother's Memoir, an account of his family's struggle with autism

Tags: children, science

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