Noteworthy News Articles on Mental Health Topics, February 14-20, 2007 Associated Press, 2/14/2007 TRENTON, N.J. -- A week after a new study found New Jersey with the nation's highest childhood autism rate, a top legislator announced plans to try to target the disorder through improved detection, treatment and awareness. The largest U.S. study of childhood autism found that about 1 in 152 have the disorder, while the highest rate -- 1 in 94 children -- was found in New Jersey. ''While the reasons for New Jersey's high autism rates remain unclear, there is no getting around the fact that these new statistics are a wake-up call for action,'' said Assembly Speaker Joseph Roberts Jr. He said a seven-bill package he is working on could be ready to advance during the next four months and predicated broad support. The Camden County Democrat said the bills will deal not only with children. He said the increasing number of children diagnosed with autism since 1991 will soon begin aging out of the educational system. ''An upsurge in adults classified with autism is going to present new challenges for the state and our communities,'' Roberts said. He said the bills in the package would: -- Establish a statewide autism registry. -- Train teachers in autism awareness. -- Create a task force on adult autism. -- Require autism awareness training for emergency personnel. -- Provide more money for the Governor's Council on Autism, which spend $4 million per year. -- Instruct doctors in early detection. -- Revise the seven-person Governor's Council on Autism to add two more members and diversify membership. Autism is a complex disorder usually not diagnosed in children until after age 3. It's characterized by a range of behaviors, including difficulty in expressing needs and inability to socialize. Its cause isn't known. Researchers have said they don't know why the rate was so high in New Jersey. Bipolar Labels for Children Stir Concern Carey Goldberg, Boston Globe- 2/15/2007 The case of Rebecca Riley highlights a hot debate in psychiatric circles over the growing number of children who are diagnosed with bipolar disorder -- a battle centered largely in Boston but affecting the treatment of young patients nationwide. Riley, the Hull 4-year-old who died of an overdose of psychiatric medications, was exceptionally young when she was diagnosed, just 2 1/2. But among somewhat older children, the bipolar label has proliferated to the point that some psychiatrists now suspect the diagnosis may be sometimes misused, placing some children at unnecessary risk from the serious medications that usually follow. Others argue that many children are given different diagnoses, such as depression, when they should really be considered bipolar, a disorder that involves intense mood swings and hitting, biting, kicking, and screaming rages. One thing is clear: In the past decade or so, the number of children diagnosed with bipolar disorder has risen dramatically. A study of mentally ill children in community hospitals, published last month in the Archives of General Psychiatry, found the proportion of children diagnosed as bipolar shot up from less than 3 percent in 1990 to 15 percent in 2000. Psychiatrists say the rate has continued to climb. Why the increase? Psychiatrists at Massachusetts General Hospital were among those who spurred it. In 1995, they published research that contradicted the prevailing notion that bipolar disorder was exceedingly rare in children. Rather, they said, 16 percent of the children referred to their psychopharmacology clinic fit the diagnosis. Overall, that would mean perhaps 1 percent of all children may be affected. "We support early diagnosis and treatment because the symptoms of this disorder are extremely debilitating and impairing," said Dr. Janet Wozniak , director of the Pediatric Bipolar Program at Mass. General. They "bring reckless and impulsive behaviors here and now and a long-term risk" for suicide, drug abuse, and crime, she said. The psychiatric controversy is over diagnosing children before their teen years. There is virtually no scientific research on children younger than 6. "Diagnosing and treating preschoolers is what I would call uncharted waters," Wozniak said, but research suggests the disorder often begins that early, and "it's incumbent on us as a field to understand more which preschoolers need to be identified and treated in an aggressive way." Rebecca was prescribed an antipsychotic medication, a drug used to treat bipolar disorder in adults, and a blood pressure medication that is sometimes used to help hyperactive children sleep. She died in December. Her parents are charged with murder, and the Board of Registration in Medicine is investigating the role played by her psychiatrist, Dr. Kayoko Kifuji of Tufts-New England Medical Center. Recent studies document a steep increase in prescriptions of anti psychotic drugs to children of all ages. That probably stems from the increasing diagnosis of bipolar disorder, said Wozniak, who gets about 90 percent of her research funding from the federal government, 5 percent from philanthropies, and 5 percent from companies that make psychiatric drugs. "Still," she said, "the overall number of prescriptions is probably small relative to the number of children who need help." The opposing camp, psychiatrists who want to define bipolar disorder more narrowly and sparingly, questions whether the disorder really affects so many children and whether the benefits of the diagnosis outweigh the risks of the drugs in many cases. "Particularly over the last five to eight years, people like myself have become more alarmed at what we see as the misdiagnosis and the over-use of medications," said Dr. Jennifer Harris , a clinical instructor at Harvard University and supervisor at Cambridge Health Alliance. "I think clinical practice got way ahead of the science. . . . There are so many pressures -- some conscious, some unconscious -- to medicate these kids that I think clinicians jumped on this diagnosis way ahead of the evidence." Harris and others point out that a diagnosis of bipolar disorder is considered more serious than attention deficit hyperactivity disorder or post traumatic stress disorder. A child diagnosed as bipolar thus tends to have much easier access to a range of help, from a spot in a therapeutic school to insurance coverage for hospitalization. Another factor in the increased use of the diagnosis is the availability of new, potentially effective drugs, particularly anti psychotics and mood stabilizers. As the diagnosis gained popularity in recent years, so did prescriptions for powerful anti psychotic drugs such as Risperdal and Zyprexa -- which have been approved for use in adults, but are prescribed for children. If there's a chance that a drug may calm down a dangerously out-of-control child and the drug is indicated for bipolar disorder, then it may make sense to diagnose the child with bipolar disorder, said Dr. George Dominiak , medical director of Westwood Lodge, a private psychiatric hospital in Massachusetts. "It's a tail-wagging-the-dog kind of thing," he said. "The treatments affect our observations and our labeling as well. " Evidence has been mounting, however, that antipsychotic drugs can cause health problems, such as diabetes and significant weight gain. "These are bad enough in themselves, but the concern is that if you have kids on these medications for extensive periods of time, then they may develop major medical problems as adults," said Dr. S. Nassir Ghaemi , director of the Bipolar Disorder Research Program at Emory University. (He has consulted for most of the drug companies that make the anti psychotics.) Another possible factor in the increase of the bipolar diagnosis is the growing awareness among psychiatrists that if they diagnose a bipolar child as being only depressed and prescribe antidepressants, the drugs could make the child dangerously worse, possibly even suicidal and psychotic. Similarly, if a child has underlying bipolar disorder but is diagnosed as having attention deficit hyperactivity disorder and prescribed a stimulant, the symptoms could worsen, said Cambridge Health Alliance psychiatrist Nancy Rappaport. Further complicating the diagnosis: Abused or traumatized children can seem to have bipolar disorder when they are actually reacting to horrors in their lives. Academic researchers have begun to make progress in refining the outlines of what constitutes bipolar disorder in children. But still, Rappaport said, the question of whether to diagnose a child with bipolar disorder can be "an agonizing clinical decision." Coach Loses Everything to Addiction Cindy Fairfield, Newhouse News Service- 2/15/2007 MUSKEGON, Mich. -- Six months ago, 37-year-old Mike Shaver appeared to have it all. With a master's degree in biology, Shaver had a good job as a lab technician. He also had plans to return as the junior varsity volleyball coach for defending state champion North Muskegon High School. Shaver's personal life also was in order. He had a promising future with his girlfriend of nine years and their 4-year-old daughter. He had a bevy of friends and a supportive family. But Shaver also had a secret life. Come nightfall, he would pull out his drugs, slipping outside into the shadows to smoke his crack pipe. When the drugs ran out, he would jump into his van, fumbling through his wallet and glove box for enough money to fund his next fix. Then he would drive to his dealer's house downtown. "They call it chasing the ghost," said Shaver, referring to the street slang of wanting more and more crack to sustain the high. But that routine stopped abruptly on a Sunday afternoon in October. Shaver drove to a quiet Subway restaurant in Lakeside, pulled a ski mask over his head, picked up an old ball-and-powder revolver on the van's passenger seat and walked inside. He robbed the Subway at gunpoint and then sped away. A mystery to friends How Shaver, a former honor roll student and captain of his high school football team, got to that point is a mystery to family and friends. They saw signs of withdrawal. They noted missed appointments. They recognized that he never seemed to have a nickel in his pocket. Shaver's parents and friends suspected something had taken control of his life. They just didn't know what. "We knew he had become withdrawn and more introverted than usual," said Cindy Shaver, his mother. "But he kept to himself. When I asked him if there was anything going on, he didn't want to talk about it." Shaver's 18-year pattern of substance abuse began with alcohol in college and moved to marijuana, painkillers and methadone before ending in crack cocaine. Vicodin, a painkiller first prescribed to help Shaver with a back problem, became the linchpin in his path to destruction. He used the drug between 2000 and 2005. "Within a month of using it, I was hooked. I got to the point that I could not function without it," said Shaver. "After five years of taking pills every day, the high wasn't enough anymore and I began using a methadone-amphetamine mix." Even after he moved to harder drugs, Shaver continued to hold down a job. He kept coaching volleyball at North Muskegon. "Coaching the volleyball team was one of the few positive things I did in the past five years," said Shaver. Nobody seemed to know about his addiction. `Didn't drink or smoke' "Mike was very knowledgeable about volleyball and he was the one who was positive and supportive with the girls because I was the screamer and yeller," said David Rawles, who led the Norse to the school's first state volleyball title last season, before joining the staff at Michigan State University in the fall. "He was a great father and didn't drink or smoke [cigarettes]. I had no clue he was using drugs. I was completely shocked at the news," said Rawles. Last spring, Shaver tried crack when his dealer was out of his preferred drug, methadone. By the third try, he was hooked. "I couldn't get enough of it," said Shaver. Two days before Shaver robbed the Subway restaurant on Oct. 29, he spent the last of his money on crack. But he had bills to pay and knew his girlfriend would be expecting money. "I decided I'd rob someplace," said Shaver. "So, when my dad was bowling on Friday night, I went over to his house and took an old gun he had. It didn't even work, but that didn't make any difference to me because I didn't plan on hurting anybody. "On Sunday, I smoked crack and left my house at about 1:30 p.m. I drove around near the Subway for about two hours trying to get the nerve to go in. Finally, I pushed myself to get it done and put the mask over my face and covered my license plate with cardboard. "I went in, yanked the phone out of the wall and told the young woman working there, `Don't worry, you're not going to get hurt, I just want the money,"' said Shaver. He was arrested within five minutes of leaving the shop. Shaver was booked on two felony counts of armed robbery, punishable by 2 years to life in prison. A plea hearing is set for March. Now Shaver, who said he has experienced mind-numbing withdrawal symptoms in the past few months, is preparing himself for prison and beyond. The color has returned to his face, replacing the telltale gray of a drug addict, and he has regained the 20 pounds he lost during his crack addiction. He is starting to feel whole again. Still, it may take years to repair the relationships he wounded. "I'm not living at home now because my girlfriend feels it will be easier on my daughter when I have to go to prison," said Shaver. "That is very sad for me. "But I have to look at this as a positive. I have lived in a prison the last several years. Jail is better than the life I've been living." Debate Over Children and Psychiatric Drugs Benedict Carey, New York Times- 2/15/2007 Early on the morning of Dec. 13, police officers responding to a 911 call arrived at a house in Hull, Mass., a seaside town near Boston, and found a 4-year-old girl on the floor of her parents’ bedroom, dead. She was lying on her side, in a pink diaper, the police said, sprawled across some discarded magazines and a stuffed brown bear. Last week, prosecutors in Plymouth County charged the parents, Michael and Carolyn Riley, with deliberately poisoning their daughter Rebecca by giving her overdoses of prescription drugs to sedate her. The police said the girl had been taking a potent cocktail of psychiatric drugs since age 2, when she was given a diagnosis of attention deficit disorder and bipolar disorder, which is characterized by mood swings. The parents have pleaded not guilty, with their lawyers questioning whether the child should have been prescribed such powerful drugs. The case has shaken a region known for the excellence of its social and medical services. The director of the state’s Department of Social Services has had to defend his agency, which had been investigating the case before the girl’s death. The girl’s treating psychiatrist has taken a voluntary, paid leave until the case is resolved. And New Englanders are raising questions that are now hotly debated within psychiatry, and which have broad implications for how young children like Rebecca Riley are cared for. Tufts-New England Medical Center, where the child was treated, released a statement supporting its doctor and calling the care “appropriate and within responsible professional standards.” Indeed, the practice of aggressive drug treatment for young children labeled bipolar has become common across the country. In just the last decade, the rate of bipolar diagnosis in children under 13 has increased almost sevenfold, according to a study based on hospital discharge records. And a typical treatment includes multiple medications. Rebecca was taking Seroquel, an antipsychotic drug; Depakote, an equally powerful mood medication; and Clonidine, a blood pressure drug often prescribed to calm children. The rising rates of diagnosis and medication use strike some doctors and advocates for patients as a dangerous fad that exposes ever-younger children to powerful drugs. Antipsychotics like Seroquel or Risperdal, which are commonly prescribed for bipolar disorder, can cause weight gain and changes in blood sugar — risk factors for diabetes. Some child psychiatrists say bipolar disorder has become an all-purpose label for aggression. “Bipolar is absolutely being overdiagnosed in children, and the major downside is that people then think they have a solution and are not amenable to listening to alternatives,” which may not include drugs, said Dr. Gabrielle Carlson, a professor of psychiatry and pediatrics at Stony Brook University School of Medicine on Long Island. Paraphrasing H. L. Mencken, Dr. Carlson added, “Every serious problem has an easy solution that is usually wrong.” Others disagree, insisting that increased awareness of bipolar disorder and use of some medications has benefited many children. “The first thing to say is that the world does not see the kids we see; these are very difficult patients,” said Dr. John T. Walkup, a child and adolescent psychiatrist at the Johns Hopkins University School of Medicine. Dr. Walkup said that when drug treatment was done right, it could turn around the life of a child with a diagnosis of bipolar disorder. Dr. Jean Frazier, director of child psychopharmacology at Cambridge Health Alliance and an associate professor at Harvard, said that up to three-quarters of children who exhibit bipolar symptoms become suicidal, and that it is important to treat the problem as early as possible. “We’re talking about a serious illness with high morbidity, and mortality,” Dr. Frazier said, “and for some of these children the medications can be life-giving.” Still, most child psychiatrists agree that there are still questions about applying the diagnosis to very young children. Recent research has found that most children who receive the diagnosis are emotionally explosive but do not go on to develop the classic features of the disorder, like euphoria. They are far more likely to become depressed. And many therapists have found that some patients referred to them for bipolar disorder are actually suffering from something else. “Most of the patients I see who have been misdiagnosed have been told they have bipolar disorder,” said Dr. Bessel van der Kolk, a professor of psychiatry at Boston University who runs a trauma clinic. “The diagnosis is made with no understanding of the context of their life,” Dr. van der Kolk said. “Then they’re put on these devastating medications and condemned to a life as a psychiatry patient.” Details about what happened to Rebecca are still emerging. A relative of her mother, Carolyn Riley, 32, told the police that Rebecca seemed “sleepy and drugged” most days, according to the charging documents. One preschool teacher said that at about 2 p.m. every day the girl came to life, “as if the medication Rebecca was on was wearing off,” according to the documents. Defense lawyers are also focusing on the question of medication. “What I want to know,” said John Darrell, a lawyer for Mr. Riley, “is how in the world you diagnose a 2-year-old and give her these strong medicines that are not approved for children.” A lawyer for Rebecca’s psychiatrist, Dr. Kayoko Kifuji of Tufts-New England Medical Center, did not return calls seeking comment. Some experts say the temptation to medicate can be powerful. “Parents very often want a quick fix,” Dr. Carlson said, “and doctors rarely have much time to spend with them, and the great appeal of prescribing a medication is that it’s simple. “To me one of the miracle of children’s brains is that we don’t see more harm from these treatments.” Siblings of Autistic Children: A Case Study Karen Olsson, New York Times Magazine- 2/18/2007 Tarah Perry wishes her brothers would remember to put on deodorant. Other 16-year-olds, after all, don’t need to be reminded of that by their 14-year-old sister. Other families don’t keep a stick of Degree in the glove compartment to enforce deodorant compliance on the way to school in the morning. Granted, Justin and Jason are different from other brothers — they are autistic twins — and Tarah’s family is therefore different from other families, and generally speaking she is perfectly O.K. with that. It’s all she has ever known. But lately she has been fighting more with her brothers. They irritate her, she says. They stink. She tells them as much, and they squabble about it, as any siblings might — only when you’re 14 and your brothers are disabled and you don’t know whether they’ll ever make it on their own or whether you’ll be responsible for taking care of them, then even the little things take on greater weight. Because what Tarah also wishes is that her brothers will one day manage to hold jobs and find friends and live the kind of life that regular deodorant-wearing people live, or some semblance of it. And in the meantime, it would be nice if they didn’t smell up the car. If you were to meet Tarah apart from her family, there’s plenty you might learn about her before the subject of her brothers ever came up. She is in the ninth grade and likes to clown around: one day this fall, for instance, when her biology teacher seemed to be in a bad mood, she drew a large smiley face on a sheet of notebook paper and held it up over her own face to try to coax a smile out of the teacher. (It worked.) Her own face is heart-shaped, sprayed with faint freckles and often demurely animated — lips slightly pursed, eyes knowing — by a look of private amusement on the verge of being made public. There is no mention of her brothers on her MySpace page, and she is more likely to talk about the marching band or her best friend, Alex, who sits near her in band, or the music she likes or gossip from school. Or trees. For some reason she can’t stand pine trees. The central Texas town of Bastrop, about 30 miles southeast of Austin, is overhung by tall loblolly pines, on account of which Tarah occasionally petitions her parents to move the family someplace else, like Ireland, where they could live in a castle and have free health insurance — although, she concedes, she wouldn’t really want to move away from her friends. Yet she has no doubt that growing up in her brothers’ shadows has shaped her own character. “I think I’m a much nicer person than I would have been if they weren’t autistic,” she says. “I would have been pretty mean and snobby. Still, I’m kind of mean sometimes, but I don’t think I’m snobby.” All her life, she has been not just their younger sister but their de facto older sister, sometime translator and mom’s right hand. (Her biology teacher is not the first stressed-out woman Tarah has tried to cheer up.) When they were young, Jason and Justin spoke only about 50 words, and those in odd, high-pitched voices. But according to Tarah’s mother, Jennifer: “It was like she knew what they wanted when I didn’t, and she would help me figure it out. Tarah was mother hen to these boys. I probably shouldn’t have put her in that position, but oh, my God, she helped me so much.” The boys are now easier to understand and cope with, but their unpredictability keeps the family on edge. “We’ll be going along just fine, and then boom, something will happen,” Jennifer Perry says. One day last winter, she took the kids to the hospital to see a friend who had just had a baby. Jason, who is unnerved by strange environments, said that he didn’t want to go inside, and so Jennifer let him wait in the car while she went in with the other kids. Once the visit was over, they piled back into her big black Suburban — Justin on the rear bench, Tarah and Jason in the middle and their younger sister, Melissa, 11, in front. They were headed for the parking-lot exit when Tarah said, “Mom, when we get home, the boys better take a shower, because they smell really bad.” Jason slammed his hand on the seat. “Mom, I asked you not to let Tarah say that anymore!” he said. Then he turned to Tarah and pulled back his fist and shouted, “I’m going to hit you so hard!” Jennifer stopped the car, ordered Jason out and told him he wouldn’t be allowed to continue living with the family if he resorted to violence. He apologized and climbed back in. Though he hadn’t hit her, the incident frightened Tarah. Several months had passed when she told me about it, and although Jason hadn’t threatened her in the interim, she was still “kind of scared to go around him,” she said. “I don’t want to say anything bad because I think he’s going to attack me, but then I think: How could he hurt me? He’s my brother.” For most of the last century, the prevailing view in America was that raising a child with a disability at home was detrimental to siblings. “I’ve been in the field long enough to know a time that families were told that for the sake of their brothers and sisters, kids with disabilities should be institutionalized,” says Zolinda Stoneman, author of numerous sibling studies and director of the Institute on Human Development and Disability at the University of Georgia. In many cases, “that was just very misguided advice.” It wasn’t until the 1980s that many people actually began to analyze sibling relationships, and relationships between disabled and typically developing siblings in particular. With the drive toward deinstitutionalization, more kids with disabilities stayed home, and researchers started investigating what influence that really had on brothers and sisters. At first, they sought to test for the expected negative impacts, interviewing parents and their typically developing children to measure those children’s levels of depression and behavior problems. For the most part, those studies failed to uncover the sorts of difficulties that had been hypothesized. Researchers concluded that although growing up with a developmentally disabled sibling may be challenging, it doesn’t cause any sort of pathology. Subsequent research suggested that when one child has a disability, siblings may in fact benefit. After all, they receive what amounts to an intensive training in tolerance and empathy. In various studies, parents in such families have characterized their typically developing kids as more caring and mature than average, while college-age siblings have described growing up with someone with a disability in favorable terms. Children with a disabled sister or brother have reported more positive interactions and less conflict with their sibling than kids whose siblings aren’t disabled, though “less conflict” cuts both ways, since sibling fights aren’t necessarily bad. In conversation, researchers will refer to “supersiblings” — children who are especially sensitive and responsible as a result of growing up with someone with a disability. But such children haven’t been studied extensively, and it now seems too simplistic to categorize the experience of having a sibling with a disability as strictly positive or negative. The supersibling notion may have provided a useful corrective to earlier views, says Tamar Heller, head of the department on disability and human development at the University of Illinois-Chicago, but researchers have moved on to address more practical questions: Are support groups useful? How can families best plan for the future? “We’re just starting to have some research that’s really looking at what are the variables that make things better for families,” Heller says. Because of the particular challenges of autism, siblings of children with the disorder tend to have a harder time than siblings of children with other sorts of special needs: they enjoy fewer positive exchanges with their brothers or sisters and show more behavior problems themselves. Fewer positive interactions might simply follow from the fact that the disorders on the autism spectrum are characterized by social deficits — from difficulty with eye contact and absence of reciprocity on the milder end to total lack of speech in severe cases. But it has also been shown that typically developing children have trouble forming a concept of autism, which may itself have an impact on the way they relate to their siblings. The very mysteriousness of autism, says Beth Glasberg, a behavior analyst and consultant at the Douglass Developmental Disabilities Center at Rutgers University, might be inherently stressful for siblings. In the late 1990s, as a graduate student at Rutgers, she interviewed 63 siblings ranging in age from 5 to 17 to learn how they conceived of autism and to evaluate those conceptions, not for correctness but for their level of sophistication. In her analysis, Glasberg relied on classic categories established by the child psychologist Jean Piaget, who described children’s intellectual development as progressing from a stage at which concepts are based on direct experience through an intermediate stage of linking direct experiences with logical thinking and finally, at around the age of 12, to a stage at which they use abstract reasoning and make generalized predictions. When it came to grasping the implications of autism for their siblings and for themselves, the study subjects reasoned in a way appropriate to their age groups: a teenage sibling could predict various ways in which her brother would never enjoy a normal life, for instance. But when it came to understanding autism itself, many of the older kids reasoned in the sort of concrete terms corresponding to the earliest stage of development: a 13-year-old girl described autism as “a disability that makes problems with language” just as a 6-year-old said that autism meant needing help learning to talk. In both cases, the children characterized the disorder by referring to their siblings’ symptoms rather than to a more general definition. Perhaps that is just because autism is such a difficult diagnosis to grasp, Glasberg says — after all, it is poorly understood even by adults — but whatever the reason, children who lack a clear concept of their sibling’s disorder could well experience anxiety as a result. As part of her research, Glasberg examined how well adjusted her interview subjects were relative to the norms for children who do not have a sibling with a disability. Her results matched those of earlier studies: on average, there was no difference in how well they were doing. Among the siblings of the children with autism, there were a higher number of scores in the critical range for behavioral or emotional problems, balanced out by a higher number of kids with fewer problems than normal. “That actually mirrors my clinical experience with kids,” Glasberg says. “The majority are sort of bopping around in the middle, but you do see these kids that are having a lot of adjustment problems, and then you do see the ones that have become like superchildren, who talk about how they really feel like they want to not cause any problems for their parents because their parents are already upset about their brother or sister. They kind of want to make up for it and be like the perfect kid.” Presumably trying to be the “perfect kid” has its own set of liabilities. What researchers have yet to determine are the factors that cause some siblings to struggle more and some to overcompensate. Of course, the complexity of family life makes it difficult to isolate the causes of a child’s behavior. When that child is a sibling of someone with autism, the analysis becomes all the more complicated because the disorder is known to have some genetic component. Also unanswered is the question of what happens to each group — the siblings with problems, the average ones and the so-called superkids — as the children mature. Tarah is one of those kids in the middle, neither maladjusted nor striving to be a perfect child. She stands a little over five feet and has no desire to grow any taller, though she would like to put a couple of hot-pink streaks in her hair and, as soon as she turns 16, to get a nose stud and multiple ear piercings and a tattoo of a smiley face on her index finger. She doesn’t class herself among the popular kids or the anime geeks or the poseur preps or the losers, while in the division of ninth-grade girls into those who wear makeup and those who do not, she falls into the second group, unless you count her bitten-off black nail polish. She attends seminary class at her Mormon church every morning before school, plays French horn in the band and spends much of her free time at home on the computer, trading messages on MySpace or writing funny stories. In September, I accompanied Tarah, her mother and her brothers to an autism conference in Dallas, where Justin and Jason had been invited to take part in a presentation. Tarah had agreed to come along to cheer on her brothers and to help her mom — reluctantly, because she hadn’t wanted to miss school and the first band performance. Jennifer works as a special-education aide and obtained permission from the school district to attend the conference; her husband, Brian, an auto mechanic, stayed home with Melissa. Time was when such a trip would have been unthinkable. Jennifer had just turned 22 when she gave birth to Jason and Justin, after a difficult pregnancy, and from the start she knew something wasn’t right. “They wouldn’t let me hold them,” she recalls. “They would be fine as long as they were in their carrier, as long as I stayed to an exact routine, but if I would try to pick them up, they would cry, and the eye contact wasn’t there. It was like they didn’t want me to be their mother.” The strain on her young marriage was intense: Brian was making $8 an hour; she couldn’t find day care that would take the boys; and when a year after their birth she told Brian she was pregnant again, he burst into tears. In family home videos from those years, Tarah appears first as a Maggie Simpson character, the placid witness, watching from her walker as Brian tosses the boys in the air or lying on the carpet as Jennifer and a visiting specialist help the boys play with simple toys. A few years later, Tarah would dress Jason and Justin in her ballerina outfits; one video taken when the boys were 4 or 5 shows Jason teetering down a hallway in a party dress and pink plastic heels. Other moments, not captured on tape, were more difficult. Into their early school years, Jason and Justin threw daily tantrums. Sometimes they would bang their heads against the wall. They tore down pictures and broke windows. They injured themselves often enough that the Perrys made sure to rotate emergency rooms, to avoid coming under suspicion of child abuse. They slept only a few hours each night. In the car, they demanded that their mother make only right turns — left turns or driving in reverse would provoke screaming fits. “We were complete prisoners,” Jennifer says. “We couldn’t go anywhere.” She remembers one time, after the boys tore up the house yet again, that she just sat down on the living room floor and sobbed, with Tarah by her side. Jason and Justin matured, not like normal boys, but they stopped having tantrums and started talking more. By the standards of their youth, the twins are positively sedate these days. Pale and rangy, with wide-set blue eyes and stiff-shouldered, loping gaits, they sometimes seem like anxious 5-year-olds trapped in elongated bodies. They speak in insistent monotones and have trouble making eye contact or exercising simple motor skills: last summer, Jason shut the car door by himself, and Tarah rewarded him with praise and a high-five. This fall, she taught him how to clean the toilet. Because of their motor-skills deficits, it falls upon Tarah to show her older brothers how to do chores, though she suspects that sometimes they just want her to demonstrate so that they don’t have to do it themselves. The drive to Dallas had its share of mundane sibling quarrels. A long foam pool noodle had somehow found its way into the back of the car, with the suitcases, and was obstructing the rear window. When Tarah told Jason to move it, he ignored her. “Boys!” Jennifer said. “Could you please listen to Tarah?” “Mama, he just doesn’t answer me — all the time,” Tarah said. “He doesn’t like you,” Justin said. “He tells me you’re mean and always screaming at him.” “And telling him he’s an idiot,” Jennifer added. “I don’t call him an idiot,” Tarah protested. “I call him a weenie.” A few hours later, her role shifted. It was evening when we arrived at the Adam’s Mark Hotel in downtown Dallas, and all of us waited in a busy lobby while Jennifer and Justin parked the car. By the time they found us, Jason had retreated to a corner near a window, where he was half-hidden by a cardboard sign, and had wrapped himself in a faded plaid comforter that he’d brought from home. Unnerved by the strange and crowded surroundings, he wouldn’t budge, then was coaxed out of his hiding place. Reluctantly, he followed us to the reception desk, averting his eyes and still cloaked in the blanket. When Jennifer joined the line, he retreated to a pillar, sat down and began to rock back and forth. She signaled to Tarah, and at once Tarah crouched in front of him and spoke to him in a low, soothing voice until he got up and joined his mother. Tarah’s earliest memories are dreams she had when she was very young, all of which concern her brothers. In one, she and Justin and Jason were out in the backyard, where their grandfather was showing them how to use a telescope, “but there were holes in the yard with monsters in the holes, and my brothers fell into them, and one of them got a broken leg.” In another dream, “they got chemicals in their eyes and went blind.” In a third, a thug beat them up. She has long known that her brothers are vulnerable. When she was in middle school, sometimes kids didn’t realize that Justin and Jason were her brothers and would make fun of them right in front of her. They would spit in her brothers’ food or threaten them or call them worthless, and she had to stick up for them a lot. Then one night in the spring of 2005, Tarah and Jennifer and Melissa were all cuddling in Jennifer’s bed together when Justin walked into the room, upset. “My mom took him into the bathroom and started talking to him,” Tarah says. Not long after that, a complaint was filed against a boy who had recently started inviting the twins over to his house. (The boy’s father denies that his son did anything to Justin.) Soon other kids were approaching Tarah to tell her they were sorry for what had happened; the news had somehow made it around the middle school, much to Justin’s dismay. For a while, the boy was still around: “I’d see him and I’d almost start crying,” Tarah says. “One day I saw that he was talking to them, and I got really, really worried, like ‘Oh, my God, what should I do?’ So I pushed them away, and then I was just yelling at him. I started screaming, ‘If you even come near my brothers I’ll kill you!’ He said, ‘I didn’t do anything Tarah, I don’t know what you’re talking about.’ I told him to go away, to not come near them, and that’s when my mom pulled up.” The Perrys and the boy’s father say the case will be tried — because it’s a juvenile case, none of this is in the public record, and the Bastrop County District Attorney’s office would not comment. Whatever is proved in court, the episode has stayed with Tarah: she says she still thinks about it often and fears that something similar could happen in the future. It’s a fear so different in magnitude from her concerns about whether they do their chores or take showers, and yet it’s lumped in together with all the other worries. On a drizzly December afternoon in Scarsdale, N.Y., 20 kids ages 5 to 15 trickled into a spare all-purpose room at the Jewish Community Center of Mid-Westchester, took seats around a long table and helped themselves to goldfish crackers as they waited for a group meeting to begin. Different as it may be to grow up in suburban New York as opposed to a semirural town in Texas, the members of the Wednesday-afternoon support group for siblings of kids with disabilities — or “Sibshop,” as many such groups are called — have plenty in common with Tarah. Almost all have a brother or sister with autism. That so many kids attend the Scarsdale group comes as a result of the active recruiting efforts of its leader, Charley Moskowitz, a social worker and fervent Sibshop advocate who also runs a Sunday program for children with disabilities. “Every time someone calls me for my Sunday program, I say, ‘Do you have another child?’ ” she told me. “And they will say to me, ‘Yes, but they’re not the affected one.’ I say, ‘Now you have to listen to my spiel.’ My spiel is, There’s no such thing as an unaffected child in a family that has a child that has special needs. I say to them, ‘Do you go to a support group?’ And they say, ‘Of course.’ Well you know what? Your other child needs a support group, too.” Shortly after 4:30, the goldfish crackers were whisked away, and Moskowitz, a vigorous, tawny-haired woman in her early 60s wearing a Sibshop T-shirt, asked whether anyone was troubled by anything that had happened since the last meeting. “My brother’s been having a big problem,” began a pensive 6-year-old girl named Ruthie, her brown hair falling around her small face, her voice soft and melancholy. “He’s been having a hard time with beeping noises. When he goes to school, there’s a little beep, but you can hardly hear it, but he can hear it, but he still comes in the door and then he runs out of the other door and right into the classroom, and he’s scared.” She continued in this vein, until Moskowitz interrupted: “Let me ask you a question, O.K.? Why are you so sad about this?” “Because I don’t want my brother to be like this, and it makes me feel sad that he has to be afraid of that.” “Can anybody help her?” Moskowitz asked. Thomas, a chatty 10-year-old with a buzz cut, raised his hand. “Well, a lot of times what autistic kids do, is like — my brother will go through a phase. This could just be, like, one month he might be afraid of beeps, and then next month he’ll love beeps.” Thomas, it was later revealed, attended the group for almost a year before he admitted that he had a brother with autism. A kid named Nick chimed in. “The reason your brother might be doing that is because autistic kids, they have almost better senses. I know it sounds weird, but, like, my brother, he can hear things that are really low. It’s nothing really bad; it’s just something that happens.” “Ruthie, you know what? There are some things that we can’t change,” Moskowitz said. “One of the things that we can’t change is the way your brother reacts to things. What is she doing, Nick?” “She’s trying to change what her brother feels.” “What else is she doing that you did for a very, very, very, very long time?” “Oh, you blame yourself.” “What else?” “You care way too much.” “How about the R-word?” “Responsibility. You’re having too much responsibility for your brother. I’ve learned from that by the way. I only help when I need to help.” “Did we pound something into him? Finally? Let’s give him a hand.” A sense of obligation weighs on even the younger children, Moskowitz says, and often it’s the brightest of the children, thinkers like Ruthie, who seem to struggle the most. “These are the kids who are going to be taking care of their siblings when their parents die,” she says. “These are the kids that are going to have all the responsibility, and if they don’t get help now, who’s going to help them? They have to work through this before they graduate from high school so that they can have the courage to go off to college and have a life and still be connected to their sibling when it comes time to make a decision about what they have to do.” Often Tarah imagines what life would be like were Jason and Justin not autistic. “I think me and my brothers would actually be kind of close,” she says. She would be able to talk about her problems with them; they would protect her and help her with schoolwork. Her dad would let them drive her places and do more things. They would care about their clothes and the way they smell. “They’d be cool people, people that everybody knows. They’d be known as the cool kids instead of the autistic kids.” The gulf between kids with special needs and their siblings widens during adolescence, as the typical siblings begin to tie up the phone lines, venture off with friends and begin dating. A more severely disabled sibling might not notice or care, but Justin and Jason Perry seem keenly aware of the difference. Justin, more than his brother, wants to make friends, but the people he befriends most readily are elementary-school kids he meets in the video-game department at Wal-Mart. (He has also occasionally expressed a desire for a girlfriend and used to claim he had one named Crossfire.) “The boys get upset because Tarah and Melissa get to have friends over and go places, and they don’t,” Jennifer said. “They get along awesome with kids like 8 and under, but it’s inappropriate to most people. Justin will want me to invite them over. So finally I asked, ‘Why do you like them?’ And he said, ‘Because they don’t make fun of us, and they’re nice to us.’” Back when the boys were more volatile and the Perrys rarely went out in public, Justin and Jason “used to be my best friends,” Tarah says. Starting a couple of years ago, though, “I started getting a life. I started being able to do things. It was really cool, and I got carried away with it and just stopped talking to them as much. I used to be the cool sister. Now Melissa is the cool sister.” One evening I asked Jason and Justin what they thought of Tarah. I was at the Perrys’ house in Bastrop, and Tarah had left, with nails freshly painted black and temporary pink dye in her hair, for a church dance. “She used to be nice,” Justin said. “Now all she does is call us names. She’s mean.” I asked what names. “Stupid, idiot, rat, loser,” Justin said. “Pig,” Jason added. “She calls us that. And a slob.” “She’s starting to be old and be a stupid teenager,” Justin said, “and that’s what Melissa’s going to do later.” Yet while she may call them names and run off to church dances, Tarah also wonders whether she might one day become her brothers’ caretaker. The Perrys haven’t made concrete plans for Justin and Jason, and since the boys are still maturing, it remains to be seen just how independent they’ll become. “If they end up living with me, I’m going to make them get a job and have some responsibility,” Tarah says. “That way, they wouldn’t be just sitting around the house playing video games all the time. Then I’d take what they earn, and some would go to keeping house and some to buy them more video games.” They could maybe work at Gamestop, their favorite store, she says. In Dallas, the panel went off smoothly enough. Justin, Jason and three other boys from their class showed power-point presentations they assembled with their teacher’s help, the twins sitting silently as they advanced the slides. The real highlight of the trip, though, came the day before, during an excursion to the Dallas Children’s Museum. In one area, there were large, free-standing trays of bubble liquid, with metal wands more than a foot in diameter resting in them. The group drew bubble after bubble from the trays, in long shimmering tubes and bobbing globes. “Megabubble!” intoned the largest and most cheerful of the boys, over and over. This went on for a while. At one point, Tarah stood next to Jason and told him to bend his head forward over one of the trays. “Is it going to hurt?” he asked. “No,” she said. She drew the wand out of the tray and over his head, so that a bubble surrounded his face. “Ohhh,” he said, peering out through the window of glycerine and cracking a cautious smile. “Tarah made me get inside the bubble!” he exclaimed. But by the time he’d spoken, it had already popped. Girl's Death Puts Doctor at Center of Controversy Patricia Wen, Boston Globe- 2/19/2007 Six years ago, an 11-year-old boy from Belchertown was experiencing wild mood swings. Counseling sessions did not calm his sometimes violent eruptions. Then one day, the child and his mother walked into the Springfield office of Dr. Kayoko Kifuji, a petite, soft-spoken child psychiatrist who had come to the United States from Japan six years earlier. She listened intently to Griffin Reid and his mother, taking particular interest in their family history, which included mental illness. Soon, the doctor diagnosed the boy with early signs of bipolar disorder, his mother said. Within a few sessions, the doctor wrote prescriptions for mood-stabilizing drugs. Now, Griffin, 17, is on lithium pills under Kifuji's care and credits the psychiatrist with giving him a future. "I probably would be kicked out of school by now if she didn't come into my life," Griffin said. Kifuji and her prescription pad are now at the center of controversy, following the death of one of her youngest patients, a 4-year-old Hull girl who police say died from an overdose of a sedating drug used for bipolar disorder. The parents of Rebecca Riley are accused of intentionally over-medicating the girl and were charged this month with first-degree murder. Prosecutors have not said whether Kifuji is a target of a criminal probe, saying only that their investigation into the girl's death remains open. Kifuji began treating Rebecca for bipolar disorder and attention deficit hyperactivity disorder starting at age 2 1/2 , and had prescribed three psychotropic drugs. She also treated her two older siblings for similar psychiatric problems. The State Police have questioned Kifuji about what kind of instructions she gave to Rebecca's mother about dosages, and how closely the doctor monitored how often the prescriptions were being refilled. The psychiatrist, who is now on staff at Tufts-New England Medical Center, has voluntarily suspended her practice while the state's medical licensing board investigates the case. Kifuji and her attorney, J.W. Carney Jr., declined to comment for this article. Many who know her describe Kifuji as a compassionate, hard-working doctor who listens carefully to patients and parents. The 52-year-old clinician began training as a child psychiatrist relatively late in her career. In her research, she has explored the biological origins of psychiatric illnesses, putting significant emphasis on family history in treatment. Since coming to the United States in 1994, she has thrown herself into work inside one of the city's major teaching hospitals, winning the affection of many colleagues, staff, medical students, and patients who praise her dedication. "She works longer hours than anyone in the department," said Dr. Bernard Katz, a retired psychiatrist at Tufts-New England Medical Center who hired her. "And she takes pride in it." After Rebecca's death, many parents who have brought their children to Kifuji say her reputation has been unfairly tarnished when the blame should fall solely on Rebecca's parents. Top officials at Tufts-New England have defended the doctor. Some doctors object to the suggestion that Kifuji relied too heavily on medication in treatment, and point out that nearly all of today's child psychiatrists prescribe medications to treat severely disturbed young children, after other therapies fail. And because so few psychotropic drugs are approved by the government for use by children, psychiatrists often have little choice but to utilize low doses of the drugs made for adults. The children Kifuji sees, said Katz, have serious behavioral problems and often come from troubled families. Those who criticize her do not realize her deep desire to end the children's suffering. But others say Kifuji was known to pursue pharmacalogical treatments more quickly than others in the field. One doctor, who knows her professionally, said she was the psychiatrist to whom you would refer patients you thought needed psychotropic medications, as opposed to more of the "talking approach" treatment. "She was someone who was an expert in psychopharmacology," said the doctor, who asked not to be identified because he does not want to be drawn into the controversy about her case. Dawn Bruneau, a mother of four from Chicopee, said she stopped bringing her 8-year-old son to see Dr. Kifuji in 2003. She said Kifuji diagnosed her son at age 7 with bipolar disorder, which has been confirmed by other psychiatrists. But Bruneau said Kifuji, then in Springfield, was particularly aggressive in proposing multiple medications early on, which Bruneau believed worsened her son's symptoms or caused no improvement. "I was uncomfortable with the pushing of the medications," she said. Bruneau said she ultimately switched to another psychiatrist, whose more restrained approach to medications led to an improvement in her son's behavior. Harry Spence, the commissioner of the Department of Social Services, has said that an independent review by Children's Hospital of Kifuji's prescriptions for Rebecca, requested by the agency after the girl died, found the medication amounts to be "inappropriate." The State Police investigator's report said Kifuji prescribed three medications for the girl: 750 milligrams a day of Depakote, an anti seizure drug also used as a mood-stabilizer; 200 milligrams a day of Seroquel, an antipsychotic drug; and .35 milligrams a day of clonidine, a blood pressure drug also used as a sedative. The drugs have not been tested and approved by the federal government for psychiatric use in children, but the law does not stop doctors from prescribing these and other drugs to children if they do so safely based on their medical judgment. The police report also outlined a distressing pattern of Rebecca's mother's ability to obtain refills of her medications, even when some pharmacists and a local therapist, who worked with the Riley family, raised questions to the doctor about the girl's medications. Michael Bourbeau, attorney for Rebecca's mother, said the mother insists that Kifuji sanctioned the giving of an extra dose of clonidine, the drug blamed in her death, if the girl had trouble sleeping at night. Kifuji has vehemently denied that during interviews with police. Kifuji moved into child psychiatry after working for about a decade as a pediatrician in Japan, with a specialty in treating allergies. At Tokyo Women's Medical College, she earned her medical degree, as well as a doctorate in medical science. Just before her 40th birthday, she came to Boston to participate in a rigorous triple-board residency program at Tufts-New England. It took five years and she was eventually licensed to practice pediatrics, child and adult psychiatry. In 2000, Kifuji went to Springfield to Baystate Behavioral Health, a community mental health clinic serving children and families, where she worked until 2003. She chose Springfield, in part, because her visa to study in this country required her to spend a certain amount of time working, after training, in an area with a shortage of child psychiatrists, Katz said. In the summer of 2003, she returned to Tufts-New England as a staff psychiatrist, where she also pursued research and teaching. Last year she co authored a paper on medical conditions with psychiatric manifestations, and recently became a member of the Academy of Psychosomatic Medicine, an organization for psychiatrists with an interest in patients who suffer combined psychological and general medical illnesses. Numerous parents say they are grateful to Kifuji for stabilizing their children's troubled behavior, which enabled their young ones to focus on school and make friends. A 34-year-old Waltham mother said until she met Kifuji, she could not find a child psychiatrist in Boston who would see her 2-year-old son. She said he was suffering from severe anxiety due to his Fragile X syndrome, a genetic condition that can lead to severe disabilities. She said her son was a "nervous wreck," biting his fingernails to the point of bleeding. "In a city known for its medical prowess, there was no medical professional willing to speak to us about psychiatric issues for toddlers," said the mother, who asked to remain nameless to protect her son's privacy. When she brought her son to see Dr. Kifuji in Boston during the past year, the doctor conducted a thorough examination of the boy and listened to a detailed account of his behavior. She soon agreed to try him on a low dosage of risperidone, an antipsychotic medication sometimes used for behavioral problems in children. She said, within two weeks, the boy's anxiety decreased significantly. "It was like night and day," she said. It remains unclear exactly what prompted Kifuji to travel across the Pacific Ocean to change medical specialties, and establish a new life in America. Kifuji is the primary breadwinner in her Somerville home because her husband, a writer, has been struggling with significant medical problems, Katz said. Kifuji does not have children of her own, but has worked hard taking care of other people's children, particularly highly troubled children from difficult family situations, colleagues say. "Kayoko was treating these very unstable families that nobody else would treat," Katz said.
Nicholas Wade, New York Times- 2/20/2007 Researchers have found that Rett syndrome, a severe form of autism, may not be so entirely beyond repair as supposed. In mice that carry the same genetic defect as human patients and have similar symptoms, the disease can be substantially reversed, even in adult mice, by correcting the errant gene. This is a surprising result for a neurological disease. Biologists generally assume that if the brain does not wire itself correctly at specific stages of development, the deficit can never be corrected. The treatment for the Rett mice would not work in people because it involved genetically engineering the mice before conception. But by showing that the neurons are intact, except for the stricken gene, the finding may encourage new approaches. “It gives renewed hope that Rett syndrome will be a treatable disorder, and maybe autism as well,” said Monica Coenraads, co-founder of the Rett Syndrome Research Foundation. Fred Gage, a brain expert at the Salk Institute, said, “A renewed optimism for finding a therapy for these types of diseases is warranted, I believe.” Rett syndrome strikes mostly girls, who around the age of 3 start to lose their speech and movement faculties. It is one of the spectrum of autistic disorders, but unlike most of the others it is caused by mutations in a single gene. The gene, known as MECP2, was identified in 1990 by Adrian Bird, a molecular biologist now at Edinburgh University. In 1999, Ruthie Amir and Huda Zoghbi at the Baylor College of Medicine discovered that mutated forms of this gene are the cause of Rett syndrome. Dr. Bird, as part of his continuing study of what the gene does, engineered a strain of mice whose MECP2 genes had been inactivated with the insertion of an extra block of DNA. When the mice were several weeks old, they started to develop the symptoms of Rett syndrome, including the loss of movement control seen in human patients. Dr. Bird and his colleague Jacky Guy had engineered a second gene into the mice, one with the ability to snip out the interfering block of DNA in MECP2. The second gene could be activated at will by dosing the mice with the drug tamoxifen. When the stricken mice were fed tamoxifen, even at quite advanced ages, they lost the symptoms of Rett syndrome, Dr. Bird and his colleagues reported last week in the journal Science. A similar finding was published this month in The Proceedings of the National Academy of Sciences by Dr. Rudolph Jaenisch and colleagues at the Whitehead Institute, though in this study the mice’s recovery was not as complete. Dr. Bird believes that the mice’s symptoms are reversible because the MECP2 gene is not involved in any of the steps that lead neurons to grow and make the right connections among themselves. The gene comes into play only afterward, in maintaining the genetic decisions the developing neurons have made. Among the most important of these are steps to permanently switch off many genes that the neurons will no longer need. Each of the various symptoms of Rett syndrome presumably arises because a specific gene that should have been shut down is left on, causing havoc. The MECP2 gene plays a central role in this silencing process. Its job is to recognize chemical tags called methyl groups that get added to DNA at what are called CpG sites, and to recruit proteins that silence or switch off the genes at these regions. “What MECP2 does is to go where the methyl groups tell it to go,” Dr. Bird said. “So when you put it back, normal service is resumed.” Dr. Bird believes that this is the first time a neurological disease has been corrected by restoring a missing component of cells, and that researchers should now reconsider the view that little can be done to repair the brain after birth. “Our result shows it’s not too late,” he said, “so there’s no excuse for not going hell-for-leather to find some sort of therapy.” The reconsideration could extend to other neurological diseases in which the neurons appear to be intact. “Given that features of Rett can be reversed in a mouse model,” Dr. Zoghbi said, “one would predict that postnatal disorders like autism and schizophrenia might be reversible.” But it is not so easy to correct a mutated gene in people, and gene therapy has seldom worked. The problem in Rett syndrome is that the father’s copy of MECP2 gets damaged in the course of generating sperm. The gene is carried on the X chromosome, of which women have two copies in each cell. But one copy, the one bequeathed by either the mother or the father, is randomly inactivated in each cell so as to keep dosage levels the same in women’s cells as in men’s, which possess only one X chromosome. Males with a defective MECP2 gene mostly die before birth, whereas in affected women half the cells will have a good copy, half a bad one. Could the good copy be restored in cells where it is silenced? Some biologists are thinking of ways to reawaken genes on the inactivated X chromosome in women, Dr. Gage said. Another approach, Dr. Zoghbi and Dr. Jaenisch suggested, would be to figure out the target genes that MECP2 is supposed to keep silenced and whose improper activation presumably causes the various symptoms of Rett syndrome. Drugs that suppressed each of these target genes might alleviate the symptoms of disease. Out of Control: A True Story of Binge Eating Jane Brody, New York Times- 2/20/2007 This month, researchers at Harvard published a survey finding that binge eating is by far the most common eating disorder, occurring in 1 in 35 adults, or 2.8 percent — almost twice the combined rate for anorexia (0.6 percent) and bulimia (1 percent). Yet unlike the other two, binge-eating disorder is still not considered a formal diagnosis by the American Psychiatric Association. I’m mystified as to why, and when you read my story you may wonder as well. It was 1964, I was 23 and working at my first newspaper job in Minneapolis, 1,250 miles from my New York home. My love life was in disarray, my work was boring, my boss was a misogynist. And I, having been raised to associate love and happiness with food, turned to eating for solace. Of course, I began to gain weight and, of course, I periodically went on various diets to try to lose what I’d gained, only to relapse and regain all I’d lost and then some. My many failed attempts included the Drinking Man’s Diet, popular at the time, which at least enabled me to stay connected with my hard-partying colleagues. Before long, desperation set in. When I found myself unable to stop eating once I’d started, I resolved not to eat during the day. Then, after work and out of sight, the bingeing began. I learned where the few all-night mom-and-pop shops were located so I could pick up the evening’s supply on my way home from work. Then I would spend the night eating nonstop, first something sweet, then something salty, then back to sweet, and so on. A half-gallon of ice cream was only the beginning. I was capable of consuming 3,000 calories at a sitting. Many mornings I awakened to find partly chewed food still in my mouth. And, as you might expect, because I didn’t purge (never even heard of it then), I got fatter and fatter until I had gained a third more than my normal body weight, even though I was physically active. My despair was profound, and one night in the midst of a binge I became suicidal. I had lost control of my eating; it was controlling me, and I couldn’t go on living that way. Fortunately, I was still rational enough to reach out for help, and at 2 a.m. I called a psychologist I knew at his home. His willingness to see me in the morning got me through the night. Just talking about my behavior and learning from the psychologist that I was not the only person with this problem helped relieve my despair. Still, he was not able to help me stop bingeing. That was something I would have to do on my own. I finally reached the conclusion that if I kept eating that way, the dreadful foods would end up killing me. And I knew by then that diets were a disaster, something one goes on to go off, only to regain what one has lost. So I decided that if I was going to be fat, at least I was going to be healthy. An Eating Plan Getting Help
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