The DSM-5 and the elimination of Aspergers 10 years later

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Just over 13 years ago, when the draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was released, debates erupted almost immediately. Many of them centered on the manual’s folding of Asperger syndrome into the autism spectrum disorder definition and concerns that some autistic people would be excluded from services under the new guidelines.

In the years since, things on that front have mostly “settled down,” according to Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles. But even as old debates die out, the past few years have seen a new one spring up: whether the term “profound autism” is a useful way to differentiate some members of the spectrum. That has parts of the autism community again eyeing the DSM-5, hoping for a revision and additional clarity for clinicians.

But the story of how the DSM-5 came to say what it does suggests a tough road ahead. It took years of collaboration between autism researchers and a fledgling group of autistic self-advocates. And to those closest to the matter, it’s not even clear there will be a DSM-6.

The American Psychiatric Association (APA) publishes and maintains the DSM. The prior major update to the manual was done in 1994, and in 2007 the APA gathered 13 work groups to overhaul diagnostic criteria and update accompanying scientific information to create the DSM-5.

When Ari Ne’eman, co-founder and then-president of the Autistic Self Advocacy Network (ASAN), and his colleague Steven Kapp heard that there would be major changes to the criteria for autism for the fifth edition of the DSM, they knew what was at stake.

Ne’eman and Kapp, who was then a doctoral student and ASAN chapter co-director, understood that whatever was laid out in that book would affect the lives of autistic people for years to come, just as it had when DSM-IV was released.

Yet the two men also knew they were being presented with an opportunity. Updating the diagnostic guide is at its core an academic process, but also a “political” one and therefore subject to influence, Kapp and Ne’eman wrote in a book chapter in 2020. Getting a diagnosis is a critical point in an autistic person’s life, and ASAN wanted to help shape the process.

ASAN, however, was on the outside. The Neurodevelopmental Disorders Work Group’s purview included autism, and the APA appointed its members — all vetted researchers in the space. This did not sit well with Kapp or Ne’eman.

The relationship between ASAN and the work group was “complex,” Kapp and Ne’eman wrote, but it was also “historically significant,” as the two men knew of “no prior example of successful advocacy to refine and improve diagnostic criteria from the community subject to it.” Indeed, Ne’eman is officially listed in the DSM-5 as an adviser to the Neurodevelopmental Disorders Work Group, along with more than a dozen researchers.

The two groups did not see eye to eye on every topic, but they shared an ambitious goal: to fold the diagnoses of Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS) into the autism spectrum disorder diagnosis.

After some three years of lobbying, ASAN failed to convince the work group to reduce the number of social-communication sub-items needed for autism diagnosis. But it achieved its goal of excluding recovery criteria from the DSM-5, and, most importantly, the definition of autism was united: Gone were Asperger syndrome and PDD-NOS from the landscape.

The work group also added a new condition called social communication disorder (SCD), which some felt was meant to help address fears that the loss of Asperger syndrome and PDD-NOS would create a gap.

But the end result of these changes is that today autism is being used to “describe an incredible range,” Lord says. That in its own right has only led to more confusion — the exact opposite of the intended effect of collapsing autism into one diagnosis.

Questions of diagnosis and identity swirl in the autism community. Some, such as Alison Singer, president of the Autism Science Foundation, suggest a need to return to the days of the more divided spectrum that was in the DSM-IV. Swaths of others say this suggestion is merely “weaponizing” autism’s heterogeneity, as Mary Doherty, founder of Autistic Doctors International and Autistic Med Students, wrote in Spectrum in 2023.

When a draft of the DSM-5 was released in 2010, the removal of Asperger syndrome as a separate diagnosis quickly drew attention from not just academics, but the general public. Members of the work group felt it necessary to explain their decision.

ASAN agreed with this, believing that folding all three conditions into one diagnosis would help eliminate the stigma of an autism diagnosis versus an Asperger diagnosis.

But there was also a sense that something had been lost. Sandra Jones, writing in Spectrum in 2020, said her research found that for many, “Asperger syndrome is more than a diagnosis. It is an identity.”

There was also fear that the diagnosis of autism would become too narrow without Asperger syndrome or PDD-NOS included. In 2012, Volkmar gave a presentation at a meeting in Iceland that used previously collected data to show that many people diagnosed with Asperger syndrome or PDD-NOS would not meet the DSM-5 criteria for autism.

The water around inclusion data is still murky. A meta-analysis from 2019 indicated that the change to the DSM-5 criteria did lead to fewer diagnoses of autism among some who would have been diagnosed with Asperger syndrome, but at the same time, the prevalence of autism in the United States has continued to climb, with experts saying one reason for the increase is better screening and more accurate diagnoses of children.

The DSM-5 offers additional specifiers for autism diagnoses, too, including “with or without accompanying intellectual impairment” and “associated with a known medical or genetic condition or environmental factor.”

But the specifying terms have not been effective, Lord says. “Nobody uses those,” she says. “I mean, it’s just not practical to have long phrases.” In the end, the levels ended up “almost tautological,” Lord says, and should be improved to be more evidence-based.

The ongoing debates have raised hopes in the broader autism community that some issues might be resolved in a DSM-6.

In the decade since the release of the DSM-5, Ne’eman and Kapp have both stepped away from ASAN leadership. Ne’eman, who could not be reached for an interview despite Spectrum’s multiple attempts to contact him, is a doctoral student at Harvard University. Kapp, who is senior lecturer of psychology at the University of Portsmouth in the U.K., declined to be interviewed.

ASAN stands by its position on the DSM-5 from 10 years ago, says Zoe Gross, ASAN’s director of advocacy. “We are still definitely in support of the unified diagnosis, which has eliminated a lot of confusion and clinician-by-clinician variation in the diagnostic process,” Gross says. Of a DSM-6, she says, “we would want to see criteria that reflect autistic people’s experiences, not just outside observations of autistic people.” An example of something that could be included, she says, is more about motor issues. “Autistic people discuss experiencing issues with movement and motor planning beyond what is described in the current criteria, including ‘getting stuck’ or catatonia,” she says.

But it isn’t clear a revision is coming, even 10 years after the previous update.

Michael First, professor of clinical psychiatry at Columbia University, was an editorial and coding consultant for the DSM-5. There were nearly two decades between the publication of the DSM-IV and the DSM-5. When asked if 6 is being considered, First said it’s “an amazingly excellent question.”

After the release of the DSM-5, the APA decided to move to a new model of updating the guide, one that is iterative and more nimble. It’s possible that the APA will consider a DSM-6 if diagnostic criteria need major changes. But for now, suggested changes are submitted online and reviewed by a small committee of experts. If the proposed change is accepted, it is posted for public comment on the APA website. Indeed, in 2022, a formal text revision of the DSM-5 was published, which included small clarity changes to the autism entry. So far, this process is “working pretty well,” First says, and there are “no plans” for a DSM-6, though he says “the door is open.”

Regardless, some, such as Volkmar, think that maybe a book isn’t the way forward anyway. He is pinning his hopes on finding viable biomarkers that have not yet been discovered, though not for lack of trying. For her part, Lord agrees that “we need ways of better acknowledging the very different set of circumstances” of each autistic person, “but I don’t know how that fits into a DSM-6.”

Yeah, I wish they’d kept Asperger Syndrome as a separate diagnosis. Hopefully they will bring it back.

I was diagnosed with Asperger’s when I was 7, so almost 30 years ago. So when they took it away, it was a huge loss of identity as I can’t remember a time when I didn’t have that label. It’s still my go-to label when I’m describing myself to people because it describes me very effectively.

Yes, any sub-categories going forward would likely have to avoid the reference to Hans Asperger. I wonder what alternative labels could be used.

I was diagnosed with Asperger’s when I was 7, so almost 30 years ago. So when they took it away, it was a huge loss of identity as I can’t remember a time when I didn’t have that label. It’s still my go-to label when I’m describing myself to people because it describes me very effectively.

Yes, any sub-categories going forward would likely have to avoid the reference to Hans Asperger. I wonder what alternative labels could be used.

The merging was just diagnostic laziness, maybe it made some people very rich in certain fields so that was the reason?.

Its caused a lot of problems they are only now starting to address like the new category of profound autism.

It wasn't laziness, the previous situation was a number of different diagnoses that overlapped and conflicted with each other and didn't necessarily cover everybody that is now covered. Even after the solutions, it's still often thousands of dollars to get a formal diagnosis and potentially years of waiting. Not to mention having to explain what your specific diagnosis means versus the other ones that might well overlap to a significant degree.

I do realize that some people have an emotional to their diagnosis. I don't personally get it as I've been given and stripped of a number over the years, but this was over all an improvement in terms of getting people accurately diagnosed and connected to help.

The biggest difference is in IQ and verbal ability so they could have still separated them on that alone for a start

There will always be reasons for and against but merging in my opinion has caused more problems than it solved.

There is a difference between creating sub categories and creating a separate diagnosis. Aspergers was a separate diagnosis. Lorna Wing proposed it in a journal article in 1981. Her continuing lobbying for it made a reality by the 90s. What happened was Wing did a prevalence study and found many people who were impaired by Autistic traits but did not meet that era’s diagnostic criteria. She proposed Aspergers as a separate diagnosis as a way of getting kids an Autism diagnosis without calling it Autism. The idea was that parents would be more willing to get their kids assessed for Aspergers rather than Autism with stigmas of ret*d, no feelings, no chance of success in life common back then.

In the short term with the huge help of the internet which became widely available around that time. Aspergers was a short to medium term success in getting more people diagnosed beyond anyones wildest imagination. But separating the diagnoses caused problems. On one hand Aspie Supremacy that lives on as Autistic supremacy, such as the notion that Autistics have superpowers. On the other hand you have the popular idea that Aspies/high functioning autistics have a fake disease whose real problems are character flaws that can be solved by tough love.

Whatever you may think of the “profound autism” diagnosis proposal, it still has autism in the name ie. a subcategory, not a separate condition.

Maybe a subcategory would have been better Asperger’s autism just like profound autism.

Instead we have Hollywood actors lumped in with those living in residential care which doesn’t make sense.

I don’t really see the current obsession in diagnosing mild adult cases anyway, those people are likely unable to get welfare can probably work and end up feeling bad about themselves after in many cases, some mentioned on WP.

Those people who feel bad and don’t want to feel bad about having a disorder are driving much of the Orwellian language of extreme ND and make problems for the more disabled

Maybe leaving them alone as just BAP or different without a label would have been better for everyone.

Maybe a subcategory would have been better Asperger’s autism just like profound autism.

Instead we have Hollywood actors lumped in with those living in residential care which doesn’t make sense.

I don’t really see the current obsession in diagnosing mild adult cases anyway, those people are likely unable to get welfare can probably work and end up feeling bad about themselves after in many cases, some mentioned on WP.

Those people who feel bad and don’t want to feel bad about having a disorder are driving much of the Orwellian language of extreme ND and make problems for the more disabled

Maybe leaving them alone as just BAP or different without a label would have been better for everyone.