Doctors want to redefine autism; parents worried

boboyuyuan

One child doesn't talk, rocks rhythmically back and forth and stares at clothes spinning in the dryer. Another has no trouble talking but is obsessed with trains, methodically naming every station in his state.

Autistic kids like these hate change, but a big one is looming.

For the first time in nearly two decades, experts want to rewrite the definition of autism. Some parents fear that if the definition is narrowed, their children may lose out on special therapies.

For years, different autism-related labels have been used, the best known being Asperger's disorder. The doctors working on the new definition want to eliminate separate terms like that one and lump them all into an "autism spectrum disorder" category.

Some specialists contend the proposal will exclude as many as 40 percent of kids now considered autistic. Parents of mildly affected children worry their kids will be left out and lose access to academic and behavioral services — and any chance of a normal life.

But doctors on the American Psychiatric Association panel that has proposed the changes say none of that would happen.

They maintain the revision is needed to dump confusing labels and clarify that autism can involve a range of symptoms from mild to severe. They say it will be easier to diagnose kids and ensure that those with true autism receive the same diagnosis.

With new government data last week suggesting more kids than ever in the U.S. — 1 in 88 — have autism, the new definition may help clarify whether the rising numbers reflect a true increase in autism or overdiagnosis by doctors.

There is no definitive test for autism. The diagnosis that has been used for at least 18 years covers children who once were called mentally retarded, as well as some who might have merely been considered quirky or odd. Today, some children diagnosed with autism may no longer fit the definition when they mature.

"We're wanting to use this opportunity to get this diagnosis right," said Dr. Bryan King, a member of the revision panel and director of the autism center at Seattle Children's Hospital.

The revision is among dozens of changes proposed for an update of the psychiatric association's reference manual, widely used for diagnosing mental illnesses. The more than 10,000 comments the group has received for the update mostly involve the autism proposal, with concerns voiced by doctors, researchers, families and advocacy groups. A spokeswoman declined to say whether most support or oppose the autism revision.

The group's board of trustees is expected to vote on the proposals in December, and the updated manual is to be published next year.

Among the proposed changes:

— A new "autism spectrum disorder" category would be created, describing symptoms that generally appear before age 3. It would encompass children with "autistic disorder," now used for severe cases, plus those with two high-functioning variations.

A diagnosis would require three types of communication problems, including limited or no conversation and poor social skills; and at least two repetitive behaviors or unusual, limited interests, including arm-flapping, tiptoe-walking and obsession with quirky topics.

— Autistic disorder and high-functioning variations — Asperger's disorder and PDD-NOS, or "pervasive developmental disorder not otherwise specified" — would be eliminated, but their symptoms would be covered under the new category.

Asperger's kids often have vast knowledge about a quirky subject but poor social skills; PDD-NOS is notoriously ill-defined and sometimes given to kids considered mildly autistic.

— Another new category, "social communication disorder," would include children who relate poorly to others and have trouble reading facial expressions and body language. A small percentage of children now labeled with PDD-NOS would fit more accurately into this diagnosis, autism panel members say.

They say the changes make scientific sense and are based on recent research.

Opponents include older kids and adults with Asperger's who embrace their quirkiness and don't want to be lumped in with more severe autism, and parents like Kelly Andrus of Lewisville, Texas. Her son, Bradley, was diagnosed with mild autism a year ago, at age 2.

"I'm really afraid we'd be pushed out of the services we get," she said. That includes a free preschool program for autistic kids and speech and occupational therapy, which cost her $50 a week. The family has no medical insurance.

Opponents also include a well-known Yale University autism researcher, Dr. Fred Volkmar, who was on the revision panel but says he was unhappy with the process and quit. "I want to be sure we're not going to leave some kids out in the cold," he said.

Volkmar is senior author of a study suggesting that the revision would exclude nearly 40 percent of children with true autism. But members of the revision panel have challenged Volkmar's methods, saying he relied on outdated data from two decades ago.

One major advocacy group in the field, Autism Speaks, said it is awaiting further research on the effects of the revisions before deciding whether to endorse them.

Dr. James Harris, a panel member and founding director of the developmental neuropsychiatry program at Johns Hopkins University, said the proposal will provide a better label for children who really only have communication problems.

"I don't want a child labeled as autistic, which suggests a chronic, lifelong problem, when he has a social communication problem that may get better if he has proper services and his brain matures," Harris said.

Harris said these kids don't need intensive autism therapy but should be eligible for other types of special education typically offered in public schools.

Dr. Daniel Coury, chief of developmental and behavioral pediatrics at Nationwide Children's Hospital in Columbus, Ohio, said parents have valid concerns because insurance companies and schools may not immediately recognize that children receiving the new diagnosis may need special services.

"So there may potentially be a lag time where services would not be available," he said.

He noted it is already difficult for many families to get costly autism therapy. Some insurers don't cover it, and many financially strapped school districts have cut special education.

thankstoyilin

这篇小综述提供了一些新的信息。主要是：

美国精神协会正在修订自闭症的诊断指南，估计明年发布。主要的变化包括：
（1）定义新的“自闭症谱系障碍”，描述在3岁前的常见症状，包括典型自闭症以及其他两类被认为是高功能的类型，也即阿斯伯格症、PDD-NOS（广泛性发育障碍，一般用于不典型的、轻微的、边缘性的孩子）

（2）去掉阿斯伯格、PDD-NOS这两种诊断名，但他们的表现是能被新定义的“自闭症谱系障碍”覆盖的。

（3）引入一个“社交障碍”的诊断，主要针对那些与人交往有困难、在识别表情和肢体语言方面有困难的孩子，在原先的PDD-NOS中有一小部分孩子可以更准确地套用这个诊断。

一些阿斯伯格或者PDD的家长担心这样的诊断标准会让他们失去一些享受社会服务的机会。但协会的负责小组认为不需要有这样的担心。

在专家内部也有一些不完全一致的意见。具体不多说了。

燕原

其实最关键的是，国家有政策，下面有对策，保险和教育口能省则省，能赖则赖，怎么让有需要孩子得到帮助还是个问题。

boboyuyuan

(CNN) -- Editor's note: In 1994, the American Psychiatric Association published the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-IV. The DSM is the standard classification of mental disorders used by mental health professionals in the United States.

For the several years doctors around the country have been working to update the manual. The DSM-5 is expected to be published in May 2013, and the proposed changes to the definition of autism have caused some controversy. Dr. Bryan H. King is one of the doctors working on revising that chapter.

My e-mail invitation to be a part of the DSM-5 revision process came on January 4, 2007.

At the time, I was told that the work would be completed in 2011 and that participation would not be too burdensome. The process could be accomplished primarily through e-mails and conference calls, with in-person meetings held sparingly.

It's interesting to reflect on the fact that when the ink was drying on the last version of the DSM in 1994, e-mail and the Internet as we know it were still evolving.



Life with autism: In their own words

Autism rates increasing, but why?

Understanding autism through music

Study says 1 in 88 kids autistic In the nearly two decades since DSM-IV -- such Roman numerals suggest a chiseling in stone, don't they? -- there have been significant advances in technology and medicine, significant advances in our understanding of neuroscience and even changes in the significance of the DSM itself.

There are good reasons to change the DSM and perhaps some good reasons to leave it alone.

The manual has evolved over time from a relatively small guide for the collection of diagnostic prevalence data to the standard text for every course on psychiatric illness throughout the world.

It has also become the dominant coding guide for insurance companies, schools and other agencies responsible for covering or creating special provisions for individuals with developmental or mental disorders. Whether someone receives the death penalty or a lesser sentence can rise or fall on whether he met criteria for a disorder as defined in the DSM.

Every psychiatrist has an opinion about the DSM, and it typically includes both love and hate. In child psychiatry in particular, it is often said that children must not have read the DSM, because their symptoms so rarely seem to fit neatly into one of the diagnoses, often straddling several.

Our advances in knowledge over the years clearly support efforts to improve the process, but we need to be particularly careful that we do no harm.

Now five years in to this "nonburdensome" process, our work group has spent nearly 2,500 person-hours in meetings and another 3,500 hours on teleconferences discussing refinements to the diagnostic criteria for autism and other neurodevelopmental disorders.

And ours is just one of the smaller chapters in this manual. Work groups focused on mood disorders, personality disorders, anxiety disorders and so on are equally invested in this process.

As a group of clinician scientists who have devoted our professional lives to the problem of autism and related disorders, we've been given an extraordinary opportunity to update and improve how autism spectrum disorder, or ASD, is diagnosed.

Every decision has been considered from multiple perspectives to determine the potential impact on individuals with the disorder. We've even taken the step of posting iterations of the possible changes online for professional and public comment. The goal here is not to settle or vote on what is most popular, but to be sure to leverage the collective experience and wisdom of professionals, patients and everyone in between to minimize unanticipated consequences from potential change -- to ensure that we do no harm.

We are also directly testing, in trials, how the new criteria will perform. We are specifically looking at whether or not people who currently have appropriate ASD diagnoses might be affected by this change.

Our preliminary look at the field trial data suggests that the lines around the autism spectrum disorders will not be significantly redrawn with DSM-5.

As we get closer to finalizing this revision of the DSM, there is understandable concern about whether some individuals will "lose" their diagnoses.

There is no question that some diagnoses will change. For example, Asperger's disorder will become autism spectrum disorder. But the goal here is finding the best way to capture the symptoms and problems that an individual has, to map those symptoms onto disorders that are valid, and which then inform prognosis and treatment and further study.

We have a ways to go before the love-hate relationship we clinicians have with the DSM changes much. I am certain that children will continue to challenge our diagnostic constructs with their complexity, and I know that we will want to resist chiseling DSM-5 criteria into stone.

But I also believe that by refining the diagnostic criteria to reflect current science, we're that much closer to getting it right. Perhaps that will make the next revision less burdensome. In any case, when the invitation comes for working on the next DSM, it would be wise -- as for any significant remodeling project -- to double the estimate for time to completion.

Dr. Bryan H. King is the director at the Seattle Children's Autism Center and director of child and adolescent psychiatry at the University of Washington and Seattle Children's Hospital. On The Autism Blog, King and other medical experts at the Seattle Children's Autism Center share information and perspectives for those raising a child with autism.

boboyuyuan

We have a ways to go before the love-hate relationship we clinicians have with the DSM changes much. I am certain that children will continue to challenge our diagnostic constructs with their complexity, and I know that we will want to resist chiseling DSM-5 criteria into stone.

But I also believe that by refining the diagnostic criteria to reflect current science, we're that much closer to getting it right. Perhaps that will make the next revision less burdensome. In any case, when the invitation comes for working on the next DSM, it would be wise -- as for any significant remodeling project -- to double the estimate for time to completion.

boboyuyuan

Redefining Autism: Will New DSM-5 Criteria for ASD Exclude Some People?
Experts call for small and easy changes to the Diagnostic and Statistical Manual, the "bible" of psychiatry, so that everyone with autism spectrum disorder qualifies for a diagnosis

People have been arguing about autism for a long time—about what causes it, how to treat it and whether it qualifies as a mental disorder. The controversial idea that childhood vaccines trigger autism also persists, despite the fact that study after study has failed to find any evidence of such a link. Now, psychiatrists and members of the autistic community are embroiled in a more legitimate kerfuffle that centers on the definition of autism and how clinicians diagnose the disorder. The debate is not pointless semantics. In many cases, the type and number of symptoms clinicians look for when diagnosing autism determines how easy or difficult it is for autistic people to access medical, social and educational services.

The controversy remains front and center because the American Psychiatric Association (APA) has almost finished redefining autism, along with all other mental disorders, in an overhaul of a hefty tome dubbed the Diagnostic and Statistical Manual of Mental Disorders (DSM)—the essential reference guide that clinicians use when evaluating their patients. The newest edition of the manual, the DSM-5, is slated for publication in May 2013. Psychiatrists and parents have voiced concerns that the new definition of autism in the DSM-5 will exclude many people from both a diagnosis and state services that depend on a diagnosis.

The devilish confusion is in the details. When the APA publishes the DSM-5, people who have already met the criteria for autism in the current DSM-IV will not suddenly lose their current diagnosis as some parents have feared, nor will they lose state services. But several studies recently published in child psychiatry journals suggest that it will be more difficult for new generations of high-functioning autistic people to receive a diagnosis because the DSM-5 criteria are too strict. Together, the studies conclude that the major changes to the definition of autism in the DSM-5 are well grounded in research and that the new criteria are more accurate than the current DSM-IV criteria. But in its efforts to make diagnosis more accurate, the APA may have raised the bar for autism a little too high, neglecting autistic people whose symptoms are not as severe as others. The studies also point out, however, that minor tweaks to the DSM-5 criteria would make a big difference, bringing autistic people with milder symptoms or sets of symptoms that differ from classic autism back into the spectrum

A new chapter
Autism is a disorder in which a child's brain does not develop typically, and neurons form connections in unusual ways. The major features of autism are impaired social interaction and communication—such as delayed language development, avoiding eye-contact and difficulty making friends—as well as restricted and repetitive behavior, such as repeatedly making the same sound or intense fascination with a particular toy.

The DSM-5 subsumes autistic disorder, Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS)—which are all distinct disorders in DSM-IV—into one category called autism spectrum disorder (ASD). The idea is that these conditions have such similar symptoms that they do not belong in separate categories, but instead fall on the same continuum.

Essentially, to qualify for a diagnosis of autistic disorder in DSM-IV, a patient must show at least six of 12 symptoms, which are divided into three groups: deficits in social interaction; deficits in communication; and repetitive and restricted behaviors and interests. In contrast, the DSM-5 divides seven symptoms of ASD into two main groups: deficits in social communication and social interaction; and restricted, repetitive behaviors and interests. (For a closer look at the changes, read the companion piece: "Autism Is Not a Math Problem". You can also compare DSM-IV and DSM-5 criteria for autism on the APA's Web site.)

The APA collapsed the social interaction and communication groups from DSM-IV into one group in the new edition because research in the last decade has shown that the symptoms in these groups almost always appear together. Research and clinical experience has also established that heightened or dulled sensitivity to sensory experiences is a core feature of autism, which is why it appears in DSM-5 but not in the preceding version. The psychiatric community has generally applauded these changes to the criteria for ASD.

What is in question is how many of the DSM-5 criteria a patient must meet to receive a diagnosis—too many and the manual excludes autistic people with fewer or milder symptoms; too few and it assigns autism to people who don't have it. Since the 1980s the prevalence of autism has dramatically increased worldwide, especially in the U.S. where the Centers for Disease Control and Prevention estimates that nine per 1,000 children have been diagnosed with ASD. Many psychiatrists agree that the increase is at least partially explained by loose criteria in DSM-IV.

"If the DSM-IV criteria are taken too literally, anybody in the world could qualify for Asperger's or PDD-NOS," says Catherine Lord, one of the members of the APA's DSM-5 Development Neurodevelopmental Disorders Work Group. "The specificity is terrible. We need to make sure the criteria are not pulling in kids who do not have these disorders."

thankstoyilin

楼主，您要帖呢，拜托摘译一点概要吧。也不用总让俺们替你编译了。：）