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New global diagnostic manual mirrors U.S. autism criteria

by  /  11 December 2017
mother and daughter at psychiatrist
Modified manual: An update to the psychiatric manual used in Europe and elsewhere collapses Asperger syndrome into autism.

Maskot / Getty Images

Starting next year, clinicians worldwide may be using a new, streamlined set of criteria to diagnose autism.

The criteria are part of a highly anticipated update to the “International Classification of Diseases,” a diagnostic manual produced by the World Health Organization (WHO). The latest draft of the manual, dubbed ICD-11, collapses autism, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS) into a single diagnosis of ‘autism spectrum disorder.’

This change mirrors the criteria in the ICD’s U.S. counterpart, the fifth edition of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-5), released in 2013.

“I think that this is good news,” says Catherine Lord, founding director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. Lord was in the working group for the DSM-5 but was not involved in the ICD update. “It will make life simpler for people making diagnoses.”

The ICD-11 is scheduled to roll out in May 2018. The changes seem unlikely to provoke the controversy that accompanied the DSM-5 draft prior to its release. Some researchers worried at the time that people classified as having Asperger syndrome or PDD-NOS would lose access to services. Those concerns seem to have waned, and experts say that they don’t expect a similar reaction to the ICD-11.

“I’d be very surprised if there would be a battle,” says David Skuse, professor of behavioral and brain sciences at University College London, who is on the ICD-11 draft committee. “DSM-5 was conceptually correct and ICD-11 is following a similar view.”

Better book:

Autism features outlined in the ICD-11 fall into the same two categories as those in the DSM-5: difficulties in initiating and sustaining social communication and social interaction, and restricted interests and repetitive behaviors. Previous versions of each manual included a third category for language problems.

Both of the new manuals allow clinicians to diagnose autism alongside other conditions, such as anxiety or attention deficit hyperactivity disorder; previous versions instructed clinicians to choose one of these diagnoses.

But there are notable differences between the two manuals, too. The ICD-11 provides detailed guidelines for distinguishing between autism with and without intellectual disability. The DSM-5, by contrast, simply acknowledges that autism and intellectual disability can co-occur.

Both the DSM-5 and ICD-11 subsume childhood disintegrative disorder, a regressive condition that surfaces in late childhood, into the autism spectrum, despite its distinct features. The DSM-5 does not include regression as a criterion for an autism diagnosis, however, whereas the ICD-11 lists “loss of previously acquired skills” as a feature on which doctors can base a diagnosis.

“[ICD-11] is taking some of the better parts of DSM without falling into the same pitfalls,” says Fred Volkmar, professor of child psychiatry, pediatrics and psychology at the Yale Child Study Center, who was a vocal critic of the DSM-5.

Unlike the DSM-5, the ICD-11 does not stipulate that a person must have a certain number or combination of features to meet the threshold for autism. Instead, it lists various defining features and lets a clinician decide whether a person meets the bar.

“The flexibility allows clinicians to make the diagnosis upon the clinical judgment and common sense, as long as you follow the concepts in the guidelines,” says Michael B. First, professor of clinical psychiatry at Columbia University, who serves as an editorial consultant to WHO.

Broad criteria:

Typical children might pick up a banana and use it as a phone, but many children with autism do not show this sort of ‘symbolic play,’ which is among the criteria for autism in the ICD-10.

But the way children play varies across cultures. The ICD-11 puts less emphasis on type of play and focuses more on whether children follow or impose strict rules while playing — a behavior that can show up in any culture. An insistence on rules and on imposing those rules on others could be a sign of inflexible thinking, which is common among people with autism.

(The DSM-5 also moves away from symbolic play, but does include some play-based criteria as “difficulties sharing imaginative play or in making friends; to absence of interest in peers.”)

The new manual is intended to embrace criteria that translate across cultures.

“What we are trying to do with ICD-11 is to create a set of criteria that are so broad that they could be applied anywhere in the world,” says Skuse.

Like the DSM-5, the new draft emphasizes the importance of testing for unusual sensory sensitivities, which are common among people with autism. It also alerts clinicians to the fact that some people on the spectrum try to mask their autism features.

“Many adults report using conversational strategies and coping mechanisms to mask their difficulties in pubic, but suffer from the stress of maintaining a socially acceptable facade,” Skuse says. “This is particularly true for girls.”

A draft version of the ICD-11 is available online with registration and is open for comment.

2 responses to “New global diagnostic manual mirrors U.S. autism criteria”

  1. Aspie-Autistic 1957 says:

    It was a mistake to make Aspergers a separate diagnosis in the first place as the Aspergers and Autism criteria pretty much mirrored each other. The language ability before age 3 that was used to differentiate Autism and Aspergers is meaningless after age 5 or so. The separate diagnosis caused problems with “Aspie elitism” and more importantly the incorrect perception that most people whom identified as Aspie did so because we did not want to be associated with “real autistics”. Aspergers should have become a subset of Autism probably equivalent to “mild” autism. Subcategories are widely used for most other conditions and life in general Autism should not have been different. Just Autism without subcategories is a big confusing mess. With the elimination of Aspergers a lot time, energy and knowledge that was gained from Aspergers research was lost. Some of it could still be used for Autism research but not all of it. Also lost was the positive effect on self esteem the “Aspie” explanation/identity had especially for adults who had went their whole life without knowing why they were different and had troubles or that there were other similar people out there. “Aspie” has survived but mostly as a neutral descriptor, the positivity lost.

    If anybody still has any hope(or fear) as many did when the DSM 5 eliminated Aspergers in 2013 that the Aspergers diagnosis is going to come back can now forget about it. As predicted in the article I do not expect much of a fight to keep the diagnosis. As noted in the article before the DSM 5 went into effect that there were online petitions, blogs, “Aspie” associations speaking out against the elimination of the Aspergers diagnosis as well as some psychologists saying they would still use the DSM IV, but once the DSM 5 went into effect everybody for the most part rolled over. The ICD-11 is only going to make official what has been happening anyway. In areas of the world where the ICD manual is prominent a lot of clinicians have not been giving out Aspergers diagnosis in the expectation that the ICD would subsume Aspergers and to be in alignment with the dominant American DSM.

    What has been disturbing to me is almost 5 years after the fact is the paucity of research into what the effects the subsuming of Aspergers into autism has actually had. Does anybody even remember all the “Aspie” and Autism advocacy groups promising to closely monitor the effects of the change? The most bitter pill for me to swallow is that the Aspie elitists/supremacists got what they wanted. They favored the getting Aspergers out of the “disorder” manual because without Aspergers being in the DSM they could define “Aspie” however they pleased which is pretty much what has happened. “Aspie” or Aspergers today pretty much means a gifted socially awkward person. Those of us with more average intelligence an inhibiting impairments and thus who are not celebrity or historical figures in waiting, but who did fit the old diagnostic criteria are not represented in the current colloquial definition of Aspergers.

    That all said, what’s done is done and there are things I like in the upcoming ICD. Best of all is the diagnostic recognition of masking. On this issue it is clear that #ActuallyAutistic people were listened to. So many clinicians do not get this so hopefully having it “official” helps. 70+ years after Kanner described it the diagnostic recognition of regression is long overdue. The attempt to eliminate cultural differences in behavioral observation is a good step. I do not know if is possible to do but it is worth the try. I am glad they also recognized sensory sensitivities. I have an open mind about creating more emphasis on intellectual disabilities or not. I do have qualms about it causing similar divisions and elitism that Aspergers caused. And we will not have to use the caveat about Aspergers being an official diagnosis in many other parts of the world anymore.

    Looking towards the future I would like to see more things now considered comorbids recognized as Autism traits as happened with sensory sensitivities. Sub categories coming back is a must. They should be labeled after dominant traits such as “sensory sensitivity autism” etc. A lot of this will depend on future research.

  2. Planet Autism says:

    “It will make life simpler for people making diagnoses.”

    What a terrible reason to merge everything. For those with PDA, the diagnostic criteria are somewhat different, but more importantly the PDA support and behavioural techniques are significantly different than those for other ASDs ( Therefore the PDA group will be particularly failed.

    I truly hope this article is wrong, the final DSM-11 is not out yet. Submissions have been made regarding both Asperger’s and PDA.

    For starters, the article states: “Typical children might pick up a banana and use it as a phone, but many
    children with autism do not show this sort of ‘symbolic play,’ which is among the criteria for autism in the ICD-10.”

    As a parent to both an Aspie and an HFAer, both did pretend play and mimicking. This homogenous approach might be easier for clinicians but it is a disaster for those with ASD, who need the correct identification and understanding of their conditions. I do believe it will result in some with Asperger’s not being diagnosed. But then maybe that is the intention…

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