Munchausen Syndrome By Proxy by Lisa Fine Goldstein
Munchausen Syndrome By Proxy by Lisa Fine Goldstein© 2002 by Lisa Goldstein and Education Week , Vol. 22, Issue 12, Pages 26-29
Reproduced under the Fair Use exception of 17 USC § 107 for noncommercial, nonprofit, and educational use.
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November 20, 2002
— As if educators didn't have enough to worry about serving the surging population of special education students, some are encountering a bizarre syndrome that disrupts and can monopolize their programs. Unlike some childhood conditions, whose causes are a mystery and which may even go undiagnosed, the source of this problem goes by a familiar name: Mommy.
Researchers have recently documented cases of students who are victims of a rare form of child abuse called Munchausen by Proxy, in which parents — almost always mothers — fabricate or induce educational disabilities in their children out of a pathological need to get attention for themselves.
What's worse, school officials often find themselves drawn into abetting such parents' intentions because the parents, in most cases, credibly portray themselves as involved, concerned, and knowledgeable about their children's needs. They typically are relentless in their pursuit of unnecessary special school services, often threatening school staff members with lawsuits or harassing educators until they get their way.
For schools, resisting those entreaties may involve long and costly battles. But the stakes are high. Recognizing the disorder could mean not only saving scarce school resources, but also rescuing children from the educational, social, and emotional costs of being incorrectly identified as having disabilities.
“Munchausen by Proxy is so counterintuitive,” says Dr. Marc Feldman, a Birmingham, Alabama, psychiatrist who specializes in the disorder. “It clashes with everything we think mothers are about. The mothers are so convincing, educators start to doubt themselves. Juries have a hard time believing the mother would do this. That's a major frustration.”
However, even if armed with good intentions to protect children from this kind of abuse, educators run the risk of firing accusations at the wrong target. Parents falsely accused of Munchausen by Proxy can wind up draining their life savings — not to mention their emotional reserves — trying to regain custody of their children.
“I am sure [Munchausen by Proxy] happens,” says Charles Rogers, a spokesman for the Council for Exceptional Children, a special education advocacy group based in Arlington, Virginia. “But I'd hate to see services denied because a school overreacted to the mother. Schools should still give most parents advocating for services the benefit of the doubt.”
Munchausen by Proxy first surfaced in doctors' offices and hospitals — not schoolhouses. The syndrome is named for an 18 th -century German aristocrat and military mercenary, Karl Friedrich Hieronymus, Freiherr von Münchhausen, more popularly known as the Baron von Munchausen, who was renowned for spinning tall tales about his adventures. The baron was the centerpiece of The Adventures of Baron von Munchausen, a 1988 movie from the Monty Python alumnus Terry Gilliam.
In 1951, Richard Asher, a British physician, coined the term “Munchausen syndrome” to describe patients who faked their own illnesses. In 1977, the British pediatrician Roy Meadow, identifying a variation on that tendency, used the term “Munchausen by Proxy” to describe someone who fabricates illnesses in someone else. Experts say the condition is a psychiatric illness in the parent and a form of child abuse.
About 95 percent of adults diagnosed with the syndrome are women. The mothers may subject their children to needless and often invasive medical exams. Some even poison their children's food or give them unnecessary medication to cause headaches, fatigue, and other symptoms. They may give the children ipecac to induce nausea. At a minimum, mental-health authorities say, those children are subjected to psychological trauma.
No empirical data exist on the number of cases of the syndrome in all its forms. But researchers say that, on average, 600 cases of suffocation and poisoning related to Munchausen by Proxy occur each year in the United States, attacks that prove fatal for about one of every seven victims. Researchers have no statistics on the syndrome's incidence in school settings.
Despite the syndrome's devastating effect on children, the public is still largely unaware of it. The hip-hop musician Eminem, of all people, may be helping to change that situation.
Eminem — the show-business name of Marshall Mathers III — has become a hero to many young people by tapping into a wellspring of anger over his childhood. He recently claimed his mother had Munchausen by Proxy. In his song Cleaning Out My Closet, Eminem says: “...a victim of Munchausen syndrome my whole life I was made to believe I was sick when I wasn't until I grew up.”
The rapper has attracted notoriety, in part, by expressing anger toward the women in his life. He had his ex-wife killed off — lyrically, not literally — in one of his songs, for instance. And he has had frequent legal tangles with his family over his portrayal of them in songs, including a $10 million defamation lawsuit by his mother regarding earlier CDs that did not include the Munchausen charge. That case, the Detroit Free Press reported, was settled out of court for $25,000.
In the 1990s, a highly publicized case in Florida helped draw attention to what can happen when a mother makes up medical — not educational — problems for her child.
Kathy Bush, a Fort Lauderdale, Fla., parent nationally known as an advocate for sick children, was convicted in 1999 of two counts of aggravated child abuse and one count of fraud. The jury was told that she had Munchausen by Proxy and had fabricated illnesses in her daughter Jennifer. By the time Jennifer was 8 years old, she had had 40 operations, made 200 hospital visits, and racked up $3 million in medical expenses.
School officials often are drawn into even primarily medical cases of the syndrome because the children involved are likely to miss many days of school, fall behind, and perhaps develop learning difficulties or behavioral and emotional problems, experts say.
But schools themselves can become the syndrome's front line. A special educator, for instance, might encounter cases in which a parent insists a child has a physical, behavioral, or learning disability that a district just cannot seem to diagnose. The school nurse may be tipped off to a case if a student is taking numerous seemingly unnecessary medications. Or administrators might find a child with an abundance of medical excuses for missing school, even though he or she appears to be fine.
Research has only recently begun to explore the impact of such relatively rare cases on school systems. This past spring, a Harvard University study focused attention on the special education variant of the syndrome.
“It has become more acceptable in society at large to identify children with disabilities,”
says Catherine C. Ayoub, the principal researcher for the study, titled
Munchausen by Proxy: Presentations in Special Education
.
“That is part of why we are seeing more [Munchausen] cases about educational needs,” she says, “because it has become a hot area.”
Many of the mothers involved intentionally cause, or lie about, illnesses or disabilities in their children to initiate discussions with those in authority. Being perceived by friends and family as a competent and self- sacrificing person in such a case, experts say, may fulfill a psychological need in the mother.
The mothers are typically victims of some kind of childhood abuse themselves, and continue the cycle with their own children.
“They really grow up with a feeling that the world is threatening,” says Ayoub, an associate professor in the department of psychiatry at the Harvard Medical School and in human development and psychology at Harvard's graduate school of education.
“The way they cope is to put themselves forward as being the 'best mother,' even to the point of controlling their children's sickness and wellness.
Most of us believe it is intentional, and the mother knows she is doing it at the time she is doing it.”
The May 2002 Harvard study focused on the experiences of five families, with a total of nine children whose mothers had Munchausen by Proxy. The researchers found that the disabilities most commonly faked were all difficult to diagnose, or debunk: attention deficit hyperactivity disorder, learning disabilities, or behavioral disabilities.
“ADHD is a popular one because it's a very common disability in school-age children,” Ayoub says. “It lends itself to being fabricated. The children are chronically traumatized. Oftentimes, this leads them to have trouble with concentration and attention, which the school might confuse with ADHD.”
The Munchausen mothers, experts on the syndrome say, have an uncanny knack for seeking out school officials willing to go the extra mile for children with special needs that are hard to document. But the mothers become increasingly more confrontational and demanding as their requests are found to be unnecessary, Ayoub says.
“We resolve one thing, and these mothers bring up another diagnosis,” says Karen O. Palladino, the director of administrative-support services in the office for exceptional education for the Brevard County school district in Florida. “With these cases, the schools pay and pay and pay, and test and test and test. The school is not the Mayo Clinic.”
Palladino tells one particularly vivid tale of a mother who insisted her 3 rd grade daughter was so sick with various ailments that the child needed home instruction from the school.
The woman, according to Palladino, threatened to sue the 72,000-student district east of Orlando. To make her case, the mother flooded the district office with doctors' notes requesting home instruction, along with years' worth of her daughter's medical records. The records included a litany of diagnoses: obesity, asthma, bronchial ailments, kidney and urinary-tract infections, nonspecific heart ailments, suspected seizures, and possible migraine headaches.
“All of the records and notes were from different doctors at walk-in clinics,” says Palladino, who declined to identify the mother or child by name to protect their privacy. “You'd think if a mother was truly concerned about her daughter's chronic conditions, she would have had ongoing care for her child.”
Even if a student had all of those problems — and Palladino was skeptical that one child could — administrators could still find a way for her to attend school, Palladino says. Home instruction is typically reserved for only the most extreme conditions. Palladino couldn't shake a nagging feeling that something was amiss. The girl, though obese, seemed otherwise healthy.
Finally, the battle-fatigued school staff relented, Palladino says. They decided to provide home instruction, but with one condition: The mother had to agree to an evaluation of the girl by an independent doctor, at the school's expense.
“I was exhausted,” Palladino says. “The mother had even been calling me at home. I guess she looked me up in the phone book. She would say the girl was going to die at school, because we would not treat her asthma attack. I've got kids in hospital beds who can come to school.”
To Palladino's amazement, the mother almost immediately started complaining about the quality of the home instruction. Often, the teacher arrived only to find the mother and daughter not at home, Palladino says.
“They would have gone out shopping,” Palladino says. “We began to realize the mother needed the girl to be home with her. She wanted her home.”
The real shocker came when the district's independent physician examined the child. The doctor found nothing that would prevent her from attending school. The only medical problem he found was the child's obesity.
The doctor wrote in his report to the district that he could find no evidence the girl needed an inhaler for asthma. It was this doctor who turned his attention to the mother and first uttered the words “Munchausen by Proxy,” Palladino says.
But what to do with that information? In such cases, educators must tread carefully, experts say, because incorrectly accusing someone of the syndrome could carry serious consequences for the mother's reputation and the future of the family.
At least six Seattle families in August sued a pediatrician who they say wrongly accused the mothers of Munchausen by Proxy. The allegations even cost one family a son they were in line to adopt. But the doctor claimed immunity under child-protection reporting laws, according to the Seattle Post-Intelligencer. Therefore, the cases did not go to trial. Neither the families nor the doctor could be reached for comment.
Experts interviewed for this story knew of no advocacy group for mothers wrongly accused of this kind of child abuse. An anonymous web site called Mothers Against Munchausen Syndrome by Proxy Allegations, or MAMA, claims that increasingly allegations are used by doctors or institutions to avoid malpractice lawsuits, or to get rid of persistent mothers in cases where doctors have been unable to make diagnoses for the children.
David Egnor, the senior director for governmental relations for the Council for Exceptional Children, says there are laws that help schools deal with such cases.
“It's something schools should become aware of, questioning a parent's motive as sinister, or as a result of some pathology,” Egnor says. “One safeguard built into the Individuals with Disabilities Education Act is that there are due-process hearings to guard against inappropriate classification. Educators have a professional responsibility to always question whether the child needs special services.”
For school officials convinced that they have a case of Munchausen by Proxy on their hands, Feldman, the Alabama psychiatrist, recommends insisting that the father attend meetings about his child's education. The father, Feldman says, often can serve as a sounding board, or as someone to whom educators might break through inside the family. But that can prove difficult because fathers typically are estranged from Munchausen-plagued families, or pay little attention to their children's school lives.
The mothers, meanwhile, may become experts in medicine or education, even making a career in one of those fields. Of the five mothers in the Harvard study, two were educational advocates and one was a reading teacher.
Palladino says that when school officials called the child-abuse hotline in Florida to report the case of the obese 3 rd grade girl, operators had not heard of a similar problem before, and were reluctant to look into it. However, they finally agreed to conduct an investigation.
“They went to the house and there was pet hair everywhere, not something you would expect from a parent who was concerned about her child's asthma,” Palladino says.
Several months later, the department of child and family services removed the girl from the home and placed her in foster care. Meanwhile, the mother received counseling for Munchausen by Proxy. Officials never filed charges against the mother, Palladino says.
The children who become unwilling accessories to Munchausen by Proxy have a lot to overcome. When they are separated from the offending parent, they typically improve, and their medical or educational
“symptoms”
often disappear entirely. But emotionally, such children may not fare as well, the Harvard study suggests. Many are left with serious insecurities and symptoms of post-traumatic stress.
“When your mother is hurting you and pretending to be your most optimal caregiver, kids are so hurt by that,” says Ayoub. “The breach of trust is damaging.”
Of the nine children in the Harvard study, six were removed from their homes by child-protection officials, and those children dramatically improved their educational status. All six were taken off of their stimulant medications for ADHD, and all of them went back to regular classes with minimal special education support within a year.
As for the case Palladino dealt with in Brevard County, the 3 rd grade girl made remarkable progress. During the time she was separated from her mother, the girl attended school regularly, did not use her inhaler, and even won an award at the county science fair. The previous year, under her mother's care, she had accumulated 76 absences from school. The next year, under foster care, she missed just three days.
But educators worried the mother was determined to keep her daughter unhealthy even on the limited, supervised visits she was allowed during their separation.
“The girl had lost a lot of weight and was doing great, but her mother would sneak in her favorite foods,” Palladino says. “[The mother] would come in here and give the girl milk shakes and fries in front of school staff. We'd tell her that her daughter was trying to lose weight for her health, and she'd tell us that she 'couldn't deny her everything.'"
The girl even had to endure weekly urine tests to make sure her mother wasn't introducing into her system any drugs or food that would sabotage her progress, Palladino says.
She was eventually returned to her mother's care, only to be removed again a short time later. A few months after that, the girl was returned to her mother once again. The girl switched schools, which is common in Munchausen by Proxy cases, experts say. She started missing class again, but had a doctor's note each time. No one at her new school was suspicious until officials from her former school called to check on her and told them of her history. Administrators at the new school filed yet another report of abuse against the mother.
Palladino had always hoped for a happy ending for the girl, but she became busy with many other cases. Eventually, she learned the girl and her mother had moved yet again. Officials at the second school weren't sure where they went.
After all the difficulties, all the attempts to intercede, all of the hours spent thinking about this girl, Palladino today has no idea what became of her.
The Research section is underwritten by a grant from the Spencer Foundation.
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| Chapter 6 — Fathers And Mothers Today |
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