On 27 December Paul Smith wrote: > Speaking of "real students" and inquiry, here's an article from > today's NYTimes that would make a good stimulus for students' > discussions of critical thinking and research (below). I think it's > a very well-written piece. I'll bet that in the next day or two we > get letters to the editor filled with claims about various alternative > autism treatments, and supported by nothing but anecdotes, with > no hint of recognition that those anecdotes add up to nothing.
Le plus ca change... "Peter Gay, reviewing *The Empty Fortress* for the New Yorker, referred to Bettelheim�s 'spectacular successes' [in curing autism] and claimed that 'Bettelheim's own theory of infantile autism is in all respects much superior to its rivals'." See: http://print.firstthings.com/ftissues/ft9706/articles/finn.html And the legacy still, apparently, lives on in a milder form. One of the makers of a PBS documentary broadcast in 2002 wrote: "I was inspired to make Refrigerator Mothers after my personal experience with mother blame just a few years ago. My family's pediatrician told me that my three-year-old son's failure to speak and strange, self-isolating social behaviors were a reaction to what the doctor described as my over-anxious, over-bearing mothering. The doctor advised me to leave my son alone and that he would be just fine. Nine months later, my son was diagnosed with pervasive developmental disorder/autism." http://www.pbs.org/pov/pov2002/refrigeratormothers/behindlens_director.html An excellent history of the theories about autism in the United States can be found in Edward Dolnick's *Madness on the Couch* (1998), Part 4, Autism, pp. 167-233. Allen Esterson Former lecturer, Science Department Southwark College, London [EMAIL PROTECTED] http://www.human-nature.com/esterson/index.html http://www.butterfliesandwheels.com/articleprint.php?num=10 http://www.butterfliesandwheels.com/articleprint.php?num=57 http://www.butterfliesandwheels.com/articleprint.php?num=58 http://www.psychiatrie-und-ethik.de/infc/1_gesamt_en.html ------------------ Mon, 27 Dec 2004 Author: Paul Smith <[EMAIL PROTECTED]> Subject: Re: being a real student > Speaking of "real students" and inquiry, here's an article from today's > NYTimes that would make a good stimulus for students' discussions of > critical thinking and research (below). I think it's a very well-written > piece. I'll bet that in the next day or two we get letters to the editor > filled with claims about various alternative autism treatments, and > supported by nothing but anecdotes, with no hint of recognition that > those anecdotes add up to nothing. > > Paul Smith > Alverno College > Milwaukee > > http://tinyurl.com/6h5en > =============================== > To Treat Autism, Parents Take a Leap of Faith > By BENEDICT CAREY > > Published: December 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." --- You are currently subscribed to tips as: [email protected] To unsubscribe send a blank email to [EMAIL PROTECTED]
