DSM and SCD

At  The Chicago Tribune, Wendy Donahue writes:

The previous edition of the DSM included three distinct subgroups under the broad definition of ASD: autistic disorder (AD), Asperger's disorder and pervasive development disorder-not otherwise specified (PDD-NOS).

The latest edition of the manual eliminates those subgroups. It adds a new subcategory called social communication disorder (SCD) to diagnose people who have verbal and nonverbal communication impairments but lack other attributes associated with autism.

Some people diagnosed with PDD-NOS under the old manual would be identified as people with SCD under the new manual.

Some states are "grandfathering in" those diagnosed under the old criteria so they don't lose insurance coverage, said Genevieve Thornton, a clinical psychologist and owner of SociAbility in Northbrook, Ill., which offers programs and therapy for children and adults with ASD, ADHD and related conditions.
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In recent years, many states have mandated that insurance companies cover applied behavior analysis, delivered by a board-certified behavior analyst, for people diagnosed with an ASD, said Dr. Jeff Skowron, a licensed psychologist and clinical director for Autism Intervention Specialists in Worcester, Mass.

As insurance companies adapt to the diagnostic changes, he said, some plans may not cover services for the new social communication disorder. That could lead to inappropriate diagnoses to enable the person to obtain treatment.

Study: DSM-5 Will Reduce Autism Diagnoses

Many posts have discussed the potential impact of DSM-5. Kristine M. Kulage, Arlene M. Smaldone, Elizabeth G. Cohn have an article in the February 2014 Journal of Autism and Developmental Disorders titled "How Will DSM-5 Affect Autism Diagnosis? A Systematic Literature Review and Meta-analysis."  The abstract:

We conducted a systematic review and meta-analysis to determine the effect of changes to the Diagnostic and Statistical Manual (DSM)-5 on autism spectrum disorder (ASD) and explore policy implications. We identified 418 studies; 14 met inclusion criteria. Studies consistently reported decreases in ASD diagnosis (range 7.3–68.4 %) using DSM-5 criteria. There were statistically significant pooled decreases in ASD [31 % (20–44), p = 0.006] and DSM-IV-TR subgroups of Autistic disorder [22 % (16–29), p < 0.001] and pervasive developmental disorder-not otherwise specified (PDD-NOS) [70 % (55–82), p = 0.01]; however, Asperger’s disorder pooled decrease was not significant [70 % (26–94), p = 0.38]. DSM-5 will likely decrease the number of individuals diagnosed with ASD, particularly the PDD-NOS subgroup. Research is needed on policies regarding services for individuals lacking diagnosis but requiring assistance.

DSM-5 and Services in South Carolina

There was some concern that DSM-5 could lead to reduction of services to people on the spectrum.  In South Carolina, however, people with a diagnosis of Asperger or PDD-NOS were ineligible for services from the Department of Disabilities and Special Needs.  But under the new, broad label, things are different.

In Columbia, The State reports:

State officials have seen a 14 percent jump in the number of people seeking help for autism because of a change in the official definition of the disorder.

The American Psychiatric Association updated its definition of autism in the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders to include Asperger syndrome and some cases of pervasive developmental disorder. That new definition made a new population eligible to receive services from the state Department of Disabilities and Special Needs.

“It’s a very good thing because these people are the ones who have kind of fallen through the cracks,” said Kim Thomas, president of the Autism Society of South Carolina. “It gives them hope that there can be services for them.”

Statewide, more than 6,500 people have applied for autism-related services from the Department of Disabilities and Special Needs. Of those, about 920 are eligible because of the new definition for autism, said Lois Park-Mole, a department spokeswoman.

But not all of them are receiving services.

That is because the department has huge waiting lists for most of its programs. One program that includes autistic children – the pervasive developmental disorder program – has 902 children in the program and another 1,241 on its waiting list.

Read more here: http://www.thestate.com/2014/02/14/3267770/new-definition-prompts-almost.html#storylink=cpy

Autism, Asperger, and Social Communication Disorder

;Jennifer Wright writes at SFARI:

Most of the children who would lose their autism diagnosis under the diagnostic criteria released last year will fall under the new category of social (pragmatic) communication disorder (SCD), reports a large study of Korean children. The study was published last week in the American Academy of Child and Adolescent Psychiatry1.

SCD is a condition that includes severe social and communication deficits but lacks the repetitive behaviors and restricted interests seen in autism.

It is unclear exactly how the newest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), released amid controversy in May last year, will affect people with autism, despite a plethora of studies addressing the issue.

On 22 January, researchers at the U.S. Centers for Disease Control and Prevention (CDC) reported that as many as 20 percent of people found to be on the autism spectrum using previous criteria would lose this designation with the DSM-5.

In contrast, the Korean study — which the journal rushed into publication the following day — suggests that only 8 percent of children would show a change in diagnosis under the DSM-5. More than three-quarters of these children had a diagnosis of pervasive developmental disorder-not otherwise specific (PDD-NOS), the mildest and arguably least clearly defined autism diagnosis in the DSM-IV.

Unlike the CDC study, these findings rely on careful clinical review of each child’s records and consider several diagnostic categories in both editions of the DSM, says lead researcher Young Shin Kim, associate professor at the Yale Child Study Center in New Haven. “We got rid of every possible variance, which might bring in differences in the diagnosis,” she says.

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One of the most controversial changes in the new guidelines is the consolidation of three autism spectrum diagnoses in the DSM-IV — autistic disorder, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS) — into a single label of autism spectrum disorder in the DSM-5.

While the guidelines were still being debated, there was widespread concern that individuals with Asperger syndrome would lose their autism diagnosis. But for many, the final version of the DSM-5 allayed fears that children with an existing diagnosis of autism would no longer qualify for services.

The findings of the Korean study should further reassure people that this is unlikely to happen, says Kim: Only 5 children diagnosed with either autistic disorder or Asperger syndrome under the DSM-IV lost that diagnosis with the DSM-5. Four of those children meet the criteria for SCD and the fifth for ADHD.

“The good news is that people with Asperger syndrome should not have to worry, because they are going to be diagnosed with [autism spectrum disorder],” says Kim. “The problem lies with PDD-NOS, because they do not meet the criteria for repetitive behavior and restricted interests.”

DSM-5 Impact

Many posts have discussed DSM-5. The New York Times reports (h/t Fred Lynch):

Proposed changes to the official diagnosis of autism will not reduce the proportion of children found to have it as steeply as many have feared, scientists reported on Tuesday, in an analysis that contradicts several previous studies.

Earlier research had estimated that 45 percent or more of children currently on the “autism spectrum” would not qualify under a new definition now being refined by psychiatric researchers — a finding that generated widespread anxiety among parents who rely on state-financed services for their children. The new report, posted online Tuesday by The American Journal of Psychiatry

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 “What I would say to families worried about the new criteria is that they’re more open-ended than the old ones,” said Catherine Lord, the senior researcher on the study. “So it’s very important to find a clinician who understands them, and who is not rushed when making a diagnosis.”

The new analysis, the largest to date, is effectively an answer to previous studies that had forecast many more children would not meet the new definition. Dr. Lord serves on the panel that proposed the new definition.

“Everyone has been waiting to see what the impact of the new diagnosis is going to be, and this study is the most comprehensive we have to date,” said Sally Ozonoff, vice chairwoman for research in the department of psychiatry and behavioral sciences at the University of California, Davis, MIND Institute. Dr. Ozonoff was not involved in the research or the debate over its implications. 

The article:   Marisela Huerta, Ph.D.; Somer L. Bishop, Ph.D.; Amie Duncan, Ph.D.; Vanessa Hus, M.Sc.; Catherine Lord, Ph.D., "Application of DSM-5 Criteria for Autism Spectrum Disorder to Three Samples of Children With DSM-IV Diagnoses of Pervasive Developmental Disorders," The American Journal of Psychiatry, VOL. 169, No. 10  Full text currently available here.  

The abstract:

Objective Substantial revisions to the DSM-IV criteria for autism spectrum disorders (ASDs) have been proposed in efforts to increase diagnostic sensitivity and specificity. This study evaluated the proposed DSM-5 criteria for the single diagnostic category of autism spectrum disorder in children with DSM-IV diagnoses of pervasive developmental disorders (PDDs) and non-PDD diagnoses.

Method Three data sets included 4,453 children with DSM-IV clinical PDD diagnoses and 690 with non-PDD diagnoses (e.g., language disorder). Items from a parent report measure of ASD symptoms (Autism Diagnostic Interview–Revised) and clinical observation instrument (Autism Diagnostic Observation Schedule) were matched to DSM-5 criteria and used to evaluate the sensitivity and specificity of the proposed DSM-5 criteria and current DSM-IV criteria when compared with clinical diagnoses.

Results Based on just parent data, the proposed DSM-5 criteria identified 91% of children with clinical DSM-IV PDD diagnoses. Sensitivity remained high in specific subgroups, including girls and children under 4. The specificity of DSM-5 ASD was 0.53 overall, while the specificity of DSM-IV ranged from 0.24, for clinically diagnosed PDD not otherwise specified (PDD-NOS), to 0.53, for autistic disorder. When data were required from both parent and clinical observation, the specificity of the DSM-5 criteria increased to 0.63.

Conclusions These results suggest that most children with DSM-IV PDD diagnoses would remain eligible for an ASD diagnosis under the proposed DSM-5 criteria. Compared with the DSM-IV criteria for Asperger’s disorder and PDD-NOS, the DSM-5 ASD criteria have greater specificity, particularly when abnormalities are evident from both parents and clinical observation.

Leading Researchers on DSM

A number of posts have dealt with pending changes in the definition of autism in DSM-5. In The New Scientist, Fred Volkmar urges caution:

The way DSM-IV is formulated means there are over 2000 combinations of the 12 criteria that at the minimum threshold of six yield an autism diagnosis.DSM-5 proposes collapsing autism, Asperger's and PDD-NOS into a single "autism spectrum" category, combining and reducing criteria, vastly cutting the number of combinations that can lead to an autism diagnosis. This prompted me and my colleagues to reanalyse the DSM-IV field-trial data from 1994 for an upcoming edition of the Journal of the American Academy of Child and Adolescent Psychiatry. We found that many people, particularly the more cognitively able, would lose their diagnosis under the new regime.

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What might this mean? It is possible that support for those in need will be hit, particularly in the US, where a diagnosis can trigger health insurance. Secondly, such a radical change would make it difficult to interpret the vast body of work done using DSM-IV - in 1993 there were about 390 peer-reviewed publications on autism. Last year over 2100 were produced.

Finally, the change of name to autism spectrum would suggest a broadened diagnostic concept when, if our reanalysis is correct, the opposite is the case. These are troubling issues. For such a major project, a more scientifically informed and engaged revision process is needed.

Frencesca Happe argues for change:

Anomalies in DSM-IV criteria for autism and other pervasive developmental disorders (PDDs), which includes the subgroups of autistic disorder, Asperger's and PDD-NOS, have led to clinical inconsistency, leading to wide variations in how diagnoses of these are made. One study found it was the clinic attended that best predicted which label was given.

 Most people diagnosed with Asperger's actually meet the DSM-IV criteria for autism. And research suggests there are no major differences between those with early language delay and those without - the feature differentiating autism and Asperger's in DSM-IV. The current split into three categories has little support in terms of genetic, neural, cognitive and other differences. Clinicians show little agreement in telling the three apart but are good judges of what is on the autism spectrum.

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There is concern that those with Asperger's or PDD-NOS might not meet ASD criteria. This is not the aim. With fellow members of the DSM-5's neurodevelopmental disorders work group, I am working hard to ensure the full autism spectrum is well recognised. We have proposed a new category of "social communication disorder" for those with some of the difficulties of autism but without rigid and repetitive behaviour - currently poorly described by the very diverse DSM-IV category of PDD-NOS. We are also seeking to aid recognition of ASD in adults coming for first diagnosis.

Asperger Stories

In The New York Times, psychiatrist Paul Steinberg writes (h/t Fred Lynch):

A 1992 United States Department of Education directive contributed to the over-diagnosis of Asperger syndrome. It called for enhanced services for children diagnosed as being on the autism spectrum and for children with “pervasive developmental disorder — not otherwise specified (P.D.D.-N.O.S.),” a diagnosis in which children with social disabilities could be lumped. The diagnosis of Asperger syndrome went through the roof. Curiously, in California, where children with P.D.D.-N.O.S. were not given enhanced services, autism-spectrum diagnoses did not increase. Too little science and too many unintended consequences.

The downside to this diagnosis lies in evidence that children with social disabilities, diagnosed now with an autism-spectrum disorder like Asperger, have lower self-esteem and poorer social development when inappropriately placed in school environments with truly autistic children. In addition, many of us clinicians have seen young adults denied job opportunities, for example in the Peace Corps, when inappropriately given a diagnosis of Asperger syndrome instead of a social disability. George Orwell might never have been able to write his brilliant essay about the shooting of an elephant if Asperger syndrome had been part of his permanent medical record....

In his 2009 book “Parallel Play,” Tim Page, a former music critic for The Washington Post, describes his relief in being given an Asperger syndrome diagnosis as an adult and thus having an explanation for his longstanding social difficulties. But the rubric of a “social disability” would be more accurate than “autism spectrum” for people like Mr. Page, and potentially just as relieving.In addition, adults and children who have normal expressive and receptive language skills can benefit more fully from social-skills programs than adults and children with true autism. In fact, Tim Page learned a large measure of his social skills from an Emily Post course, just as Warren Buffett credits a Dale Carnegie program with changing his life.

Page responds:

“Social disability” does not begin to sum up my lifelong history of insomnia, anxiety, depression, cluelessness and isolation, little of which was assuaged by Emily Post. Nor, in all modesty, does it address the singleminded, fiercely exclusive energy I can bring to a project that has captured my attention, the immersion in an otherworldly ecstasy that music, writing and film provide, and the very occasional but no less profound joy in my own strangeness.

I do not allow my diagnosis to control my life, and yes, I know that I am “high functioning” and not necessarily typical. Still, I have no doubt that Asperger yndrome explains a great deal about my triumphs, as well as my tragedies.

In the New York Times, Benjamin Nugent writes that his psychologist mother identified him as having Asperger's and put  him in an educational video.

As I came into my adult personality, it became clear to me and my mother that I didn’t have Asperger syndrome, and she apologized profusely for putting me in the video. For a long time, I sulked in her presence. I yelled at her sometimes, I am ashamed to report. And then I forgave her, after about seven years. Because my mother’s intentions were always noble. She wanted to educate parents and counselors about the disorder. She wanted to erase its stigma.

The authors of the next edition of the diagnostic manual, the D.S.M.-5, are considering a narrower definition of the autism spectrum. This may reverse the drastic increase in Asperger diagnoses that has taken place over the last 10 to 15 years. Many prominent psychologists have reacted to this news with dismay. They protest that children and teenagers on the mild side of the autism spectrum will be denied the services they need if they’re unable to meet the new, more exclusive criteria.

But my experience can’t be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.

The definition should be narrowed. I don’t want a kid with mild autism to go untreated. But I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.

Scientific American on DSM-V

Ferris Jabr writes at Scientific American:

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."

Three studies published between last summer and this month conclude that the DSM-5 criteria for ASD are too strict, but that a few small changes would make them appropriately inclusive. One might think that the APA would conduct such research themselves, but studies that explicitly compare DSM-IV and DSM-5 criteria are not an official part of the revision process. Rather, researchers who are not helping revamp the DSM, but were interested in how the new edition will change psychiatric diagnosis, decided to find out for themselves.

In a sidebar, Jabr runs the numbers:

[W]e asked astronomer and Hubble Fellow Joshua Peek of Columbia University to code a computer program that would calculate the total possible ways to get a diagnosis of autistic disorder in DSM-IV and the total possible ways to get a diagnosis of autism spectrum disorder in DSM-5. You can do the math by hand too, if you like: It all comes down to factorials. The DSM-IV criteria are a set of 12 items in three groups from which you must choose 6, with at least two items from group one and at least one item each from groups two and three. The DSM-5 criteria are a set of 7 items in two groups from which you must choose 5, including all three items in group one and at least two of the four items in group two. Peek's program crunched the numbers: there are 2027 different ways to be diagnosed with autism in DSM-IV and 11 ways to be diagnosed with autism in DSM-5.

One might think that those statistics make it absurdly easy to qualify for a diagnosis of autism in DSM-IV and incredibly difficult to meet the criteria for autism in DSM-5, but those numbers alone don't tell you anything unless you understand how common each symptom of autism is in the general population. Symptoms of autism are not randomly distributed throughout the population and the symptoms do not cluster together in random combinations. Research in the past decade has shown that some symptoms appear together much more often than others. In fact, that is one of the main reasons that the APA has consolidated the DSM-IV criteria for autism into fewer, denser and more accurate criteria in the DSM-5. The idea is that the DSM-IV criteria allowed for too many possible combinations, many of which rarely occur; the DSM-5 criteria, in contrast, better reflect the most common combinations of symptoms.

Angle Not Clear on PDD-NOS

The Mohave Daily News reports:

Repeatedly, step-by-step, Angle explained how the Reid campaign has used half-truths to twist her statements.

Outside the new party branch office in upper Laughlin, she added another, about autism. She explained health insurance companies now have 52 mandated coverages to provide. When the government required autism it added a loophole “and any other developmental disabilities not otherwise classified” — meaning those paying for autism coverage also pay the freight for a lot of other conditions.

Here is what the law ( NRS 689A.0435 ) says:

“Autism spectrum disorders” means a neurobiological medical condition including, without limitation, autistic disorder, Asperger’s Disorder and Pervasive Developmental Disorder Not Otherwise Specified.

PDD-NOS is not a "loophole." It is an autism spectrum disorder. Autism Speaks explains:

Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, for short, is a condition on the spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. That can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli.

How it's similar to classic autism

Those with PDD-NOS behave like those with classic autism in many ways. First, they are all different (meaning one person with PDD-NOS doesn't act exactly like another; the same holds true for classic autism). When interacting with others, they may appear unemotional or unable to speak, they could have trouble holding eye contact, or they may have trouble transitioning quickly from one activity to the next.

How diagnosis differs

Those with PDD-NOS are different from others on the spectrum in one specific way: While they may exhibit some symptoms of those conditions, they don't fit the bill closely enough to fully satisfy all criteria set by the experts. Perhaps they started having difficulties at a much later age than others on the spectrum. (According to the National Dissemination Center for Children with Disabilities, they are often diagnosed between the ages of 3 and 4 years old.) Or they may have the same challenges — for example, they may be oversensitive to their surroundings — but not to the extreme that others on the spectrum do.

Consequently, those with PDD-NOS are sometimes thought to have a "milder" form of autism, though this may not be technically true. One symptom may be minor, while another may be worse.