To Treat Autism, Parents Take a Leap of Faith
Benedict Carey, New York Times- 12/27/2004

Desperate parents of autistic children have tried almost everything -- hormone injections, exotic diets, faith healing -- in the hope of finding a cure. But more than 60 years after it was first identified, autism remains mystifying and stubbornly difficult to treat. About the only thing parents, doctors and policy makers agree on is that the best chance for autistic children to develop social and language skills is to enroll them in some type of intensive behavioral therapy. A government-appointed panel has endorsed such therapies, which can cost $40,000 to more than $60,000 per year. Parents fight to get their children placed in behavioral programs, encouraged by the claims of some therapists that they can produce astonishing improvement in up to 50 percent of cases. An estimated 141,000 children with autism receive special education services, in many cases including behavioral therapies, through public schools.
      Yet the science behind behavioral treatments is modest at best. Researchers have published very few rigorously controlled studies of the therapies, and the results of those studies have been mixed. While some children thrive, even joining regular classrooms, the studies have found that most show moderate or little improvement. And researchers say most parents now experiment with so many alternative treatments - including vitamins, diets, sensory therapies and computer games -- that they muddy the results of behavior treatment, making it very hard to say what is causing a child to gain skills or to decline.
      The most recent analysis of treatment research, financed by the National Institutes of Health and scheduled to be published next year, concludes that although behavior treatments benefit many children, there is no evidence that any particular treatment leads to recovery. Doctors do not yet know how to predict which children will improve in the treatments, or even how treatable the condition is, the report concludes. "If so many kids are being cured, then where are they? Who are they? Show me 10 percent," said Dr. Bryna Siegel, director of the autism clinic at the University of California, San Francisco. "The reason practitioners can't show you all these kids is because there simply aren't that many of them out there."

Questioning the Evidence
No one disputes that behavioral therapies can be transforming: parents are deeply committed to them, and most experts emphasize their successes, saying that they are the best option now available. But others say the evidence is not as solid as it is sometimes made out to be -- a view echoed by some health insurers, who have refused or limited coverage for treatment. And politics, the experts say, sometimes gets in the way of a frank evaluation of how well the programs work. "We're at a point," said Dr. Susan Hyman, an associate professor of pediatrics at the University of Rochester Medical Center, "where questioning the evidence behind them is like criticizing your grandmother's matzo-ball soup."
      Behavioral treatment programs come in several varieties. A therapy called applied behavior analysis is the most studied and most commonly used. In this approach, the therapist begins by working one on one with a child, often 20 to 40 hours a week, to build social and language abilities in very small steps -- by rewarding the youngster with a treat for learning words, for example, or for sitting still or greeting someone.
      A state-financed program in North Carolina, known by the acronym Teacch (its full name is Treatment and Education of Autistic and Related Communication Handicapped Children), uses pictures and schedules, among other techniques, to keep children focused and interacting with others, and to take advantage of their visual skills. It is taught in classrooms, by trained teachers, or in special clinics, and is provided free throughout the state.
      Floor Time, another popular option, has teachers and parents on the floor, following a child's lead in interactive play to develop emotional connections. Other approaches, including the Denver Model and Pivotal Response Training, blend rewards for specific behaviors with play techniques and schedules. These have also helped children improve.
     In a 2001 report, a National Academy of Sciences panel convened by the federal government evaluated all the research and concluded that treating children as early as possible, and giving them at least 25 hours a week of therapy, was more important than the specific name-brand approach used. Parents' involvement in the treatment was especially helpful, the report said.
      In some states, parents have fought legal battles with school districts to get such programs paid for. Many parents hire therapists to come to their homes; others move to other states to get better services. "We redesigned our entire third floor to look just like the Teacch classroom," said Inga Sawyer, whose 5-year-old son and 3-year-old daughter use Teacch methods in Carrboro, N.C., near Chapel Hill. "Both of them thrive on the structure, and it has been really helpful in organizing their day" and mainstreaming them in school, she said.

Belief Versus Proof
But believing in the programs is one thing; proving how well they work is another. Researchers say traditional studies are difficult to carry out. The therapies are extremely time-consuming, and some parents, unwilling to take a chance on less-than-optimal therapy, refuse to let their children be part of the control groups that are essential for scientific research. Even the most well-known and rigorously studied brand of behavioral therapy, the Lovaas method, appears to be less effective than was originally hoped, and its record in studies is mixed. Named after its inventor, Dr. O. Ivar Lovaas, a psychologist at the University of California, Los Angeles, the method is taught from manuals and is a version of applied behavior analysis that demands close tracking of children's day-to-day behavior. In the original program, therapists would at times slap children on the thigh when they did not behave as instructed, a punishment that was phased out in the late 1980's.
      In 1987, Dr. Lovaas reported in a small study that 9 of 19 children who received up to 40 hours a week of his intensive therapy were classified as functioning normally after at least two years. Only 2 percent of children in a comparison group that received a less intensive version of the therapy did as well. In a follow-up paper in 1993, Dr. Lovaas reported that those initial gains had held up through age 12 or 13 in the children, bringing a sense of hope and possibility to a field that had known mostly resignation.
      Yet in 2000, a team of researchers who had trained with Dr. Lovaas tried to confirm the findings and could not. After receiving 20 to 30 hours a week of the Lovaas method for two years, only 2 of 15 children in the study reached the highest level, scoring at age level on all measures and entering regular classrooms without help, according to the study's lead author, Dr. Tristram Smith, an assistant professor of psychology at the University of Rochester. No children in the control group reached the same level, he said. Children in the study who had full-blown autism, as opposed to a less severe disorder, did not show significant improvements as a group in most areas, compared with children who were given less intensive therapy, the study found.
      Dr. Lovaas, now a professor emeritus at U.C.L.A., said in an interview that the most likely explanation for the modest findings was the quality of the therapy being delivered. "I don't know why the results were so different, but my best guess is that they did not deliver the treatment as skillfully as we do here," he said.
      Yet in a review of the most recent research, accepted for publication in The Journal of Clinical Child and Adolescent Psychology, Dr. Sally Rogers, director of the MIND Institute at the University of California, Davis, wrote of that study: "This type of treatment is considered by many to be the treatment of choice for lower functioning children with autism. Yet the best designed study of this treatment, carried out by experts in the method, did not demonstrate improvement in the treated group of children with the full syndrome of autism relative to controls." In an interview, Dr. Rogers said that the Smith study by itself was too small to be conclusive, and that less rigorous trials suggested many children in intensive therapies made moderate gains in language ability and other areas, even if they did not overcome the underlying disabilities.
      In one such trial, Canadian researchers found that when they taught parents how to encourage play and communication, children showed a significant gain in language skill after just three months, compared with other autistic children treated in community day care. A 2002 Norwegian study of 25 children ages 4 to 7 found that the Lovaas treatment prompted I.Q. gains of 17 points, although no child was described as recovered, according to the review. In other work, researchers who have followed children through Teacch, the Denver Model and other programs have also noted accelerated gains in I.Q. and language, among other things. "You are talking about therapies that can raise I.Q.'s by 10 to 20 points, which is significant, and very hard to do," Dr. Rogers said.

The Fundamental Question
Still, scientists have not answered perhaps the most fundamental question about these therapies: Why does one child thrive in treatment while another, equally affected, does not? Most researchers have hypotheses. Some believe the response could have to do with structural properties of the brain, which would show up on brain scans. Others suspect that children who do not do well in treatment have a subtle language processing problem in addition to autism.
      In his long experience, Dr. Lovaas said, he has observed that children who do not learn to imitate others' speech within a few months of treatment rarely do well. And researchers in San Diego have proposed that having a basic ability to initiate social interaction is crucial to success in treatment: they found that children who tried to engage their peers frequently during a short play period did very well in therapy.
      Each of these ideas is under investigation. "I expect with more research we may find that there are two groups of children -- one group that does well in directed teaching, and another than needs a biomedical treatment," said Dr. Geraldine Dawson, director of the autism program at the University of Washington in Seattle. "And we would be able to tell them apart."
      But teasing apart such subtle differences in language and brain structure requires careful control, and that is one thing autism researchers do not have. With doctors emphasizing the importance of early treatment, parents of autistic children hear the clock ticking and try anything they can find. Three new surveys, of a total of 2,500 parents in North Carolina, Massachusetts and Pennsylvania, found that about three-quarters of families dealing with autism try alternative treatments, usually as an accompaniment to structured counseling programs.
      One of the most popular options, tried by 50 percent to 70 percent of parents, is sensory integration, a technique in which therapists often use swings or weighted vests to help "ground" a child, and even brush children's skin with a special brush. About 25 to 40 percent of parents, the surveys find, try special diets for their children, most often a menu free of gluten, a protein found in flour, and casein, a protein in dairy products, which some people believe prompt an allergic reaction that causes or worsens autism. Many parents (10 percent to 30 percent) give their children large doses of vitamins like magnesium and B6 or food supplements, based on reports that these regimes have normalized behavior in some cases. And up to 10 percent of parents have paid to have their children go horseback riding, swim in a pool with dolphins or receive healing touch therapy as part of a program for autism.
      Scientists say they do not have rigorously controlled evidence that any of these alternative treatments improves the core symptoms of autism: social isolation, repetitive behaviors and difficulty in developing language skills. In the surveys, parents generally agreed: individual treatments often helped with some behaviors, like agitation, but seldom altered the fundamental disability. "There's a grief response to a diagnosis of autism; parents go through mourning and denial, and promising them their child will be cured by these therapies gives them false hope and only prolongs the grief," said Dr. Siegel, of U.C.S.F.
      In fact, the surveys themselves contain hints of just how frustrated many families are: up to half the parents report that they have put their children on psychiatric medications, including antidepressants, stimulants like Ritalin and antipsychotic drugs usually prescribed for schizophrenia. These drugs can settle some of the symptoms associated with autism, like aggression, but they do not alter the underlying condition and can play havoc with some children's moods, doctors say.
      In the coming years, experts say, the science of treatment should become much clearer. The National Institutes of Health is financing some 70 studies related to treatment, including a careful study of the popular gluten- and casein-free diet, being conducted by Dr. Hyman in Rochester. And a group in Wisconsin has completed a trial of Dr. Lovaas's method among 23 children, and there are 10 other sites working on similar studies, according to Dr. Lovaas and Dr. Smith, who is coordinating the research. The results from these trials, they say, look encouraging.
      Still, many parents who have brought autistic children to adulthood are not holding their breath. Having tried some treatments and watched others flare out, they say change is certainly possible. But that change tends to be slow, they say, and occurs not just in their children but also in their own expectations and ways of coping.
      With the help of the Teacch program, Alice Wertheimer's son David has continued through high school in special classes, learning over time to communicate, to be comfortable with himself, to have some independence. At 18, he is a young man who enjoys repeating lines from favorite movies, mimicking other students and teachers, and spending time with his parents. As a child, Ms. Wertheimer said, David rated somewhere in the middle of the autism scale, but he has come a long way. He is also still clearly autistic, although that is not how those who know him think about it. "He is who he is," Ms. Wertheimer said, "just a great, great kid."



Rising Prescription Drug Use Points to Deeper Problems
Elizabeth Large, Baltimore Sun- 12/27/2004

When Margaret Herlth wakes up in the morning, 13 prescription drugs and two over-the-counter supplements are as much a part of her routine as a first cup of coffee. That's a lot of pills, but not a highly unusual number for an 80-year-old with serious health problems, including cardiovascular disease and breathing difficulties. "They do make me feel better if I take them," says Herlth, who lives in southwest Baltimore. "I've been in and out of the hospital so many times. Each time they give me new pills, but they never take any away."
      These days, if you're elderly, a medicine cabinet full of prescription drugs is par for the course. But even relatively young, healthy adults may be prescribed medicine as a preemptive strike to lower their cholesterol and blood pressure, to deal with a touch of arthritis, to ward off osteoporosis, to stop the symptoms of seasonal allergies or to fight depression. Many people add to the list by taking herbal supplements. They also reach for the Advil bottle at the first sign of a headache and chew antacids when they get heartburn.
      This month, the federal Centers for Disease Control and Prevention reported its latest data on prescription drug use. The agency estimates that nearly half of all Americans take at least one prescription drug and one in six takes at least three. Over the last decade, the percentage of people taking one or more prescription medicines has increased from 39% to 44%.
      We're a medicated society, of course. But the sheer number of drugs we take suggests that we may be an overmedicated society. The widespread reliance on medications creates several potential problems. For starters, some medications may not be as effective as their users believe. People often prefer newer drugs, even though they may not perform any better than their older, perhaps safer counterparts. Doctors and patients don't always have an easy time sorting out which are which.
      Then there's the problem of "polypharmacy," the term the medical profession uses to describe the taking of a number of drugs at the same time — drugs that can have unwanted interactions. "We've identified it as an actual problem, like hypertension," says Stuart Bell, an internist and vice president of medical affairs at Union Memorial Hospital in Baltimore. "Often there's a rationale for each of these medications, so these are not easy decisions."
      Meanwhile, drugs have become more expensive than they used to be. The cost of prescription medicines rose 5% in 2002, says the recently released CDC report, but because people are taking more drugs, spending increased 15.3%. Costs continue to rise, but the rate is slowing, says the Pharmaceutical Research and Manufacturers of America, the industry's trade group. It reported that prescription drug prices increased by 3.1% in 2003.

Age, weight factors
The most obvious reason Americans are taking more medicines is that baby boomers are getting older, and therefore a large bulge of the population is dealing with problems such as arthritic knees and high blood pressure. Older patients may go to several physicians, each prescribing medication. "As people get older, the risk of side effects goes up," says Dr. John Meyerhoff, a rheumatologist at Sinai Hospital in Baltimore. "It's a balance between physicians overmedicating for relatively minor complaints and giving medicines for conditions for which we have effective solutions."
      But increased drug use can't be blamed just on the graying of America. Most notably, as a society we're getting fatter. Last month, the U.S. surgeon general reported that 61% of adults were overweight or obese, leading to an estimated 300,000 deaths a year. Doctors may treat obesity and obesity-related conditions with drugs if eating less and exercising more proves too difficult for patients. "Lifestyle management can work," says Anne Cannon, a nurse and diabetes counselor at St. Joseph Medical Center in Towson, Md. "It's just much harder. We're geared to the quick fix."
      Pre-diabetes is just one of several preconditions identified in the last few years that have resulted in more people taking more medication — potentially for the rest of their lives. Last year, the National Heart, Lung and Blood Institute named a new precondition, prehypertension. It put 45 million Americans whose blood pressure readings used to be considered acceptable outside the normal range.
      In July, the federal government issued guidelines that added 7 million Americans to the 36 million already being urged to take medication to lower their LDL, or bad cholesterol. The new guidelines were set so low that it would be difficult for most people to achieve them without the help of prescription drugs.
      Labeling these preconditions "is a good way to get people's attention," says Dr. Robert Blumenthal, a Johns Hopkins cardiologist and a spokesman for the American Heart Assn. Blumenthal always tries to get his patients to make lifestyle changes first — lose weight, stop smoking, start exercising. But, he says, "my philosophy is it's good news we do have good medicines that can help the quality of life."
      Part of the increase of prescription drug use can be attributed to the fact that pharmaceutical companies do a good job of marketing their products to doctors and patients alike. Sometimes they are a physician's primary source of information about new products. It's difficult for physicians to be knowledgeable about every new drug, even with continuing education requirements and the help of professional societies. "We don't want the pharmaceutical people to be the main source of information," says Blumenthal, "but sometimes it's hard for doctors to keep up." These days, if a physician isn't quick to prescribe, the patient may well ask for a drug by its brand name.
      Meyerhoff, the Sinai rheumatologist, has found that simple leg lifts to strengthen the quadriceps can work as well as anti-inflammatories to reduce knee pain caused by osteoarthritis. But it takes more time to teach patients the exercise — time that busy primary care physicians may not have — and patients may not be willing to continue the exercise indefinitely. It's easier for them to ask for an arthritis drug they've seen advertised, like Celebrex.
      Jeff Trewhitt, a spokesman for the Pharmaceutical Research and Manufacturers of America, says that the TV and print ads for prescription drugs have one positive effect: They get patients into the doctor's office. "There have been a number of studies that show direct-to-consumer ads are a source of education," he says. "The discussion of symptoms has compelled a number of patients to have medical checkups they should have received earlier." In 1997, the FDA eased restrictions and allowed pharmaceutical companies to market directly to the consumer. The companies spend billions of dollars in the process, which has almost certainly resulted in more drugs being prescribed, says Larry Sasich, pharmacist and research analyst for the consumer advocacy group Public Citizen.

A changed relationship
With direct-to-consumer marketing of drugs and the instant availability of medical information on the Internet, the doctor-patient relationship has changed, with people taking a more active role in their treatment. Healthcare professionals see this as a good thing, but it may not go far enough.
      Cannon of St. Joseph urges patients periodically to review their medications with their physicians. One of the people she saw for counseling had been taking prednisone, a steroid, for 10 years. No one knew why. "You have to ask why you're taking them, and see if you can get off them," she says.
      One of the biggest problems with our medicated society may not be that we take too many drugs, but that we don't take the ones we should be taking. Before former President Bill Clinton had emergency bypass surgery in September, he had stopped taking his cholesterol-lowering drug because he felt he had his condition under control, points out James J. Rybacki, a clinical pharmacist and author of "The Essential Guide to Prescription Drugs 2005." "Over time, people tend to stop taking medicines," Rybacki says. In one study, two-thirds of those surveyed underused or stopped their medication and didn't tell their doctors. "Fifty percent of people fail to take drugs correctly over time," he says. Sometimes it's because they can't afford the drugs. Sometimes it's because of a perceived lack of benefit for a chronic condition without symptoms, such as high blood pressure. Sometimes it's because of "pill burden."
      Like Herlth, who has been prescribed 13 medicines, people tend not to be good about taking multiple drugs for an indefinite period. That's why pharmaceutical companies are developing combination drugs like Caduet, which treats both abnormal cholesterol and high blood pressure. "These are safe, good medicines, and they help compliance," says Blumenthal.

Too many pills?
James J. Rybacki, a clinical pharmacist and author of "The Essential Guide to Prescription Drugs 2005," has this advice for patients worried about taking too many prescription drugs:
• Ask questions. If you don't get them answered, stay in the doctor's office until you do.
• Tell your doctor if you're worried about "pill burden." Say, for instance, "I'm not sure I can take pills three times a day." There may be alternatives.
• Ask for specific goals for medications, and what the time frame is.
• Tell your doctor about all drugs you're taking, including over-the-counter, herbal remedies, nutritional supplements, recreational drugs and alcohol. There could be unwanted interactions. Some herbal extracts, for instance, can blunt the effectiveness of a prescription drug.
• Ask if this medicine is the best balance of price and outcome.
• If money is a problem, visit the website www.helpingpatients.org, which lists programs that can help with costs. Other useful sites online include www.needymeds.com, www.rxassist.org and www.medicare.org (click on "online databases" and then "drug search").

Alcohol Abuse Among Young Girls on the Rise
Jamie Talan, Newsday- 12/28/2004

The percentage of teenage girls who drink alcoholic beverages is rising faster than that of boys and, on average, the girls take their first drink at age 13, the American Medical Association said recently in reporting the findings of two surveys. The AMA contends that a class of beverages informally known as "alcopops" is partly to blame, and it is warning doctors to educate teenagers about the dangers of such sweet drinks.
      The polls indicate that teenage girls are most vulnerable to the marketing of the beverages, which contain 5 percent to 7 percent alcohol and have names like Rick's Spiked Lemonade, Doc Otis' Hard Lemon Flavored Malt Beverage, Mike's Hard Lemonade, and Hooper's Hooch Lemon Brew. The fruit-flavored drinks come in colorful packaging and are also called "girlie drinks," malternatives, RTDs (ready to drink) or FABs (flavored alcoholic beverages).
      "We're alarmed and concerned with these findings," said the AMA's president-elect Dr. J. Edward Hill, a family doctor in Tupelo, Miss. "Any alcohol is a drug with side effects. Alcopops are anything but fun and harmless." The AMA has created a poster about the dangers of alcopops and will be asking physicians to place them in their waiting rooms or exam rooms.
      In one survey, 31 percent of teenage girls said they had drunk an alcopop in the past six months, compared with 19 percent of boys. The poll found that girls consumed more of all types of alcoholic beverages than boys. A second poll surveyed adults. The polls found that half of the teenage girls said they learned of the drinks from magazine ads and half from TV commercials. Only 34 percent of women 21 and older said they had seen such advertising.
      Hill said he and his colleagues believe that companies are using these sweet, flavored beverages as "gateway" beverages to attract young drinkers. Jeff Becker, president of the Beer Institute, which represents the industry, said the marketing of "flavored alcohol beverages . . . is directed at adults. The Federal Trade Commission has examined the marketing . . . and concluded that these products were marketed to adults." The FTC report concluded that, "for the most part, members of the industry comply with the current standards . . . which prohibit blatant appeals to young audiences." But it also called for improvements, including a prohibition of ads "with substantial underage appeal." Becker said brewers "share the AMA concern over illegal underage drinking."
      However, Laurie Leiber, a spokeswoman for the Marin Institute, an alcohol industry watchdog, said evidence that these companies are marketing to teenagers "comes in the form of these products. . . . They are sweet, fizzy and fruity like soft drinks. The advertising is hip, and the single-serving, ice-cold bottles have the look and feel of sports drinks."
      The AMA reported that almost one in six teenage girls reported being sexually active after drinking in the past six months, and one in four who have tried alcopops have driven after drinking or have been in a car with a driver who had been drinking. Drinking increases the risk of teenage pregnancy and rape, said the AMA's Richard Yoast, director of the association's office of alcohol and other drug abuse. Chronic heavy drinking has been tied to breast cancer, osteoporosis, menstrual disorders and heart disease, according to the National Institute of Alcohol Abuse and Alcoholism. The federal government estimates that more than 10 million Americans under the age of 21 drink alcohol, and more than 7 million of them are binge drinkers.

One Boy's Journey Out of Autism's Grasp
John O'Neil, New York Times- 12/29/2004

Six years ago, my son James fell down a well, and he's still climbing out. James has autism. He is one of 150,000 or more American children classified in the last decade as having the once-rare disorder, including 25,000 in 2003. Half a century ago, polio epidemics left perhaps 5,000 children a year with some degree of disability, and the sight of children stricken overnight galvanized the nation. But autism's arrival, and the response to it, has not been so dramatic.
In James's case, a bubbling 2-year-old who loved "mashed totatoes" and sword-fighting faded away. In his place was a nearly silent, unhappy child who repeated meaningless phrases, lay on the floor squinting or pulled cowboy boots on and off until his feet were raw. Every day he fell a little further out of the world. But one recent afternoon James sat at our kitchen table with his best friend, Larry, goofing off instead of doing homework. They made dumb jokes and gossiped about their "girlfriends" at their school, just up the street. It's hard for me to explain how many dreams-come-true are reflected in that one sentence.
      James's journey is by no means over. He still has significant problems with reading comprehension, math, attention and social skills. He gets stuck on favorite subjects -- though this year, the Yankees, thankfully, replaced the War of 1812. He can sound as if he is speaking a second language, with the halts and mangling of idioms that implies. With his peers, he hovers at the border of acceptance. But even that list of problems is a sign of how far he has come. Six years ago, he couldn't engage with the world around him.
      Scientists know little about autism. What they have learned has underscored the complexity of its genetics and anatomical abnormalities, which begin developing soon after conception. They do know a lot, however, about what to do about autism, enough that a federal panel has set a 10-year target of preventing 25 percent of new cases. The panel's plan faces huge obstacles, starting with an absence of additional funds to carry it out. But the hardest part, panel members said, is making use of what we already can do.
      In that sense, James's progress has a sadder side: that he has been such an exception. Not everybody who gets the treatment he did progresses so far, although some go further. But only a relative handful of children with autism are thought to receive even the minimum standard of care, a pattern reflected in an increase in requests for institutional placements as the leading edge of last decade's cases reaches adolescence. The other key to improved outcomes is early detection. Most cases are caught much later than they could have been, and in that sense James was no exception. Had we any idea what to look for, we could have known in James's first year of life, I think.
      James was an easy baby. But looking back, part of the easiness was a lack of intensity in his connection to us. There was some difficulty in meeting our gaze, and a lack of curiosity about things pointed out to him -- both hallmarks of autism, and red flags on formal developmental screenings. James never got one, perhaps because his sunny disposition obscured such flaws, and because we were never worried enough to raise any concerns with his pediatrician.
      When he was 2½, we moved to northern New Jersey six weeks after our youngest son, Miles, was born. When James's behavior started to become a bit odd, we just figured he was overwhelmed. It took a third party to force us to focus on him. The director of James's new preschool took my wife, Marcia, aside one day. "He just seems a little off to me," Maureen, the director, said. "Sometimes he seems not to hear me." We know now that she was worried about more than his hearing. In the first of many strokes of luck, she was familiar with autism, having taught in a local specialty school. She suggested that we contact the local school district for an evaluation. James was fine, I thought, but why not? As the evaluation process wound on toward his third birthday and James's behavior became more difficult, it became clear that he was not fine. When Maureen called Marcia into her office again, to give a name to our fears -- "I think James is a little bit autistic" -- it made all too much sense.

Good News, Bad News
A library grew on our bedside table, bearing a message that seemed a sort of good news, bad news joke. The bad news: autism has no cure. The good news: there can be effective treatment. The bad news: it's incredibly expensive, difficult and time-consuming -- and nobody wants your child to have it. So we were pleasantly surprised when we sat down with the school's team and learned the district had recently begun a preschool autism program using the treatment the books recommended, applied behavioral analysis, or A.B.A.
      We had some questions. For one thing, he would be getting 10 hours of one-on-one therapy a week, instead of the 30 to 40 hours a week called for. We were told that quality was what counted, not quantity. We also knew we had few options. On the way home, Marcia, a physician, seethed. "Do you think I prescribe half the appropriate dose of antibiotics?" she demanded. But James needed help, and the clock was ticking.
      To get James more help, Marcia took him to a private speech therapist. She learned something about A.B.A. that day, but also about how little we knew about what was going on inside his head. She learned, for instance, that James had forgotten his name.
"What's your name?" asked the therapist, Kathy Rooney.
Silence.
"What's your NAA-aaame," she chanted in a singsong. "JAMES o-NEEE-il."
After a few more times, she repeated the question. After a pause, he answered, and Kathy showered him with praise.
      The "analysis" in A.B.A. means figuring out what a child needs to learn, the best way to teach it - and whether it's actually learned. The behavioral part means rewarding desired behavior. In some ways, that sounded like a more rigorous version of ordinary parental tasks, and Marcia began to introduce bits of it, like giving James milk only when he said "milk" instead of just pointing. I was taking him to the pool a lot, mostly to wear him out, since he had trouble sleeping. James loved to jump in, and I tried taking advantage of that desire to perform what I'd later learn was "discrete trial instruction." I held up one finger and said, "How many? One!" If James said "one," splash! By the end of the week, he was up to three, unprompted.
      We began to discover that James is, for a child with his problems, a quick learner when taught in the right way. And not everything had been lost. Shown a hard yellow plastic hat, he answered, slowly but surely, "con-struc-tion hel-met." But as Marcia began to learn more, her enthusiasm about the happy notes coming home with James began to dim. His teachers seemed to have a hard time motivating him. Most important, he just didn't seem to be learning much.
      We contacted the parents of the other children in the program, and found they were also concerned. Together, we went to the district's special education director, asking her to let an outside expert make suggestions. But as the director talked about the many costs the districts was facing, the tears trickling down one mother's cheeks dried up. We all got the message: They may be your children, but this is our program.

Home Program, Tiny Steps
That's how we came to find ourselves sitting in our basement on a stifling July day with strangers who were about to become the most important people in our lives. When Marcia had first read about "home programs," her reaction had been succinct: "Not for us!" Creating a school for one from scratch seemed insane, even without the lawsuit it would obviously require.
      But she had given up her full-time position and done it. Our greatest stroke of luck was finding someone to get us started: John Hampel of the Rutgers Autism Program, whom we had contacted when we thought the district might like an expert's help. He had high hopes, which he expressed in an unsettling way. "James is the kind of kid who is the scariest to work with," he said, "because you never know if you're going fast enough to keep up with his potential."
      What followed was an isolating time for James, at a little table for up to eight hours a day, doing work most children would find tedious in the extreme. Skills normally acquired in a blended rush were introduced in the tiniest of steps. An instructor would place two blocks side by side, one flat, one vertical, say "Do this," and hand them to James. Or touch her nose -- "do this" -- then her cheek, eyes, brow. But after a few tantrums it became clear that James liked to work. Not just for the hugs and shiny stickers. He liked being connected. And it was only under this kind of bare, intense focus that he could connect.
      Data is the lifeblood of A.B.A.; it is the only way to spot your mistakes. But along with charts of James's trial-by-trial performance, his instructors kept a log of "spontaneous language." On the program's first day there is only one entry: "I want cheese crackers." In August, that starts to creep up, to a half a dozen or so. In late September there is an explosion: "I want a big tickle." "I want the Play-Doh." Another one also jumps out: "Where is Angelica?"
      A 4-year-old whose family had just arrived from Poland, Angelica came with her mother several times a week to visit our neighbor. She knew no English and had nothing to do -- except try to get James to play. Such a determined child! Angelica was used to a language barrier and was tireless in her efforts to get James into a game, even as simple a one as rolling toy cars down the steps. "Jems. Jems! JEMS!!!!" And it worked. For brief snatches James could play along. James could play!
      What was new wasn't just Angelica, of course. James was waking up, thanks to his work at the table. New skills were creating a new interest in the world -- which were making other new skills possible. Now we tried to use our time to extend his learning. I enlisted his brothers, Miles and Chris, to teach simple play scripts, like saying, "Tickets, please!" when the chairs were lined up to make a train. We worked on the countdown for a rocket ride. Chris extended the script: "To the moon! To the stars! AAAAAHHHH!!! WE CRASHED!!!"
      But every so often there was a fresh bucket of cold water to remind us of how far he had to go -- and that time was passing. Like this blunt assessment from a speech pathologist when he turned 4: "Unless his language really picks up, he's not going to make it." Making it meant placement in a mainstream kindergarten -- a crucial sorting point. We went home scared, and Marcia made changes.
      For six weeks, the instructors focused almost entirely on getting James to talk, a lot. One technique was simple. Usually James got treats as a reward for doing well at his programs. For now, all he needed to get them was simply to ask for them. And it worked. The data the instructors took on requests per hour crept up and up, but in truth we didn't need it. He wouldn't shut up. The intensive effort had jump-started some slumbering connection in the brain. And over months we began to see flashes of a new kind of language -- talking that goes back and forth, that changes with each thing that is said.
      Then this, from the logbook for April 7, 2000:
Jeanette: I like to eat chicken.
James: I like to eat breakfast.
Jeanette: I like waffles for breakfast.
James: I like cereal for breakfast.
A conversation.

On the Road to Real School
Also that spring, James returned to the district preschool program we had withdrawn him from the year before. He hadn't been ready for it then; now he was. And so were we: we had reached a settlement in the lawsuit we had filed charging that the district had failed to provide him with an education appropriate to his needs. That yearlong migraine had drained us of time, emotion and money at a time when we had little enough to spare. But we also felt that if we let the district pound on our child without hitting back, the pounding would never stop. In the end, the court sided with the first family to go to trial in our district. The creation of district-run autism programs clearly needs to be encouraged, the judge wrote, "but it cannot be at the expense of a little boy."
      For the next year we were on the on-ramp to real school in a blur of preparation. But kindergarten turned out to be an anticlimax. He was accompanied by one of his home instructors, acting as a "shadow," and yes, things went well, and yes, his problems there were the same ones he had at home, like staying on task and following directions.
      What was big in kindergarten was something we hadn't prepared for: Larry. Sometime during preschool, children had stopped being ghosts for James. But we gradually realized what was developing here was a friendship -- the hardest thing for a person with autism at any age. Larry Pan is enthusiasm with a crew cut. What attracted Larry to James? Perhaps it was James's sense of humor (think diaper jokes). Or maybe they just were drawn to each others' big hearts.
      After our rocky start with our district, elementary school has been remarkably smooth. There was one dreadful time in first grade when James suddenly began hitting his aide, raising the prospect that perhaps he could not continue where he was. The solution turned out to be simple. A swap of aides was arranged, and Jeanette, who had known James since was 3, came in as a backup shadow. She gave him a look and the nonsense stopped. But Marcia and I felt as if we had been swept back to the cliff's edge. When a child falls out of the mainstream, it is hard to return. Unable to sleep, I wondered if this was what post-traumatic stress disorder felt like.

Knowing He Is Different
Nothing like that has happened again. There are still plenty of problems -- his progress, in some ways, consists of moving up to a better class of problems. At camp this summer, James didn't know how to handle a boy who was mean; in years past he wouldn't have recognized the hostility. James used to be unnaturally compliant: now his favorite song begins, "You're not the boss of me now..."
      And then there's the most painful progress of all: James right now is wrestling with the knowledge that he has autism. Over the last year, it has become slowly apparent to James that he is different from other children, or at least he is thinking about it. He recently asked Miles, who is now in first grade, why Miles doesn't go to a resource room. But why tell him? Giving him a name for the difference he is beginning to grasp means letting him begin coping with the issues that will remain after his intervention fades away. It's strange to be thinking of the path to adulthood for a fan of "Ed, Edd n Eddy," the silliest cartoon on TV. But that's where this road leads.
      In my glummer moments, I think about James as a boy who fell off a train and is running to get back on. Time and again he reaches it -- but the train, too, is accelerating. Will the running never end? We used a more upbeat image to tell James where he is now: he had rounded third and was getting ready to slide home. Still, James raged and cried and insisted that he didn't have autism, that other children he knew did. But he also had a lot of good questions. He knows that Larry gets tutoring in reading. Why doesn't that mean that he has autism? James and I had looked at an article about a kindergartner with cerebral palsy. Could that boy get better? Which was worse?
      And he kept on thinking. Earlier this month, at the end of a day spent on a research study, he was offered a T-shirt with a picture of a brain. He angrily refused it. "I don't want to wear that to school," he said. "Nobody else in my class has autism." In the car, he wept, asking "Why doesn't anybody else have autism?" The next night, during a sleepover, he told Larry about the incident -- about how his brain was different, about how he used to have big problems. What did Larry say? I asked James. "That the only thing I know about is peanut butter!" he said, and laughed. He had taken a chance and learned a lesson: Larry cares about him, not his label. It made me realize: from now on who James turns out to be is going to be shaped more by him than by the work being done for him. James will be his own intervention.

LONDON -- A British medical journal said Friday it had given U.S. regulators confidential drug company documents suggesting a link between the popular anti-depressant Prozac and a heightened risk of suicide attempts and violence. The British Medical Journal reported in its Jan. 1 issue that documents it received from an anonymous source indicated that Prozac's manufacturer, Eli Lilly & Co., was aware in the 1980s that the drug could have potentially troubling side-effects.
      The journal said the documents, reportedly missing for a decade, had formed part of a 1994 lawsuit against Eli Lilly on behalf of victims of a workplace shooting in Louisville, Kentucky. Joseph Wesbecker, the gunman who killed eight people and himself in 1989, had been prescribed Prozac a month before the shootings. Eli Lilly won the case, but later disclosed it had settled with the plaintiffs during the trial. The journal said one of the records, dated November 1988, reported that fluoxetine, the generic name for Prozac, had caused ``behavioral disturbances'' in clinical trials. The journal said it had turned the documents over to the U.S. Food and Drug Administration, which had agreed to review them.
      The journal said the office of U.S. Congressman Maurice Hinchey, a Democrat from New York, also was examining the documents to determine whether Eli Lilly had withheld data from the public and the FDA. ``This is an alarming study that should have been shared with the public and the FDA from the get-go, not 16 years later,'' Hinchey was quoted as saying.
      ``To our knowledge, there has never been any allegation of missing documents from the Wesbecker trial or any other trial involving Lilly,'' the company said Friday in a statement. Lilly said it had always been its objective to disclose data about the safety and efficacy of Prozac. ``Lilly has made several requests to the BMJ to obtain copies of the supposed 'missing' documents; we still await these documents,'' the statement said. ``We are surprised and concerned that a leading medical journal would not find it important to share these documents with us so that we could respond to the public in a meaningful way.'' The company said it has consistently provided regulatory agencies with results from both clinical trials and safety monitoring after the drug was approved. ``Based on this, Lilly believes that there is no new scientific information to review on this topic,'' the statement said.
      In an earlier statement to the journal, Eli Lilly said Prozac ``has helped to significantly improve millions of lives.'' ``It is one of the most studied drugs in the history of medicine, and has been prescribed for more than 50 million people worldwide. The safety and efficacy of Prozac is well studied, well documented and well established.''
      In October, FDA ordered that all antidepressants carry warnings that they ``increase the risk of suicidal thinking and behavior'' in children.
      On the Net: British Medical Journal article: http://bmj.bmjjournals.com/cgi/content/full/330/7481/7