Just when we were getting used to DSM V, there’ a revision coming down the pike. In this article, we’ll explore the differences between a full update to the DSM and a text revision, the changes that have been made as they relate to autism (and how were these changes decided), the new diagnoses that we can expect (or not), can clinicians continue to use the older DSM-5 (ha! no), and how people can advocate for changes in future versions of the DSM. Yes, it’s going to be a heavy lift. Here we go …
DSM V vs DSM V-TR
First, a bit of background on how the the first text revision came about, the DSM III-TR. It all started way back in 1980, with DSM-III, which was the first version that had “diagnostic criteria.” When the APA was working on it, they had this idea that it was just something that a psychiatrist would be interested in. When they published it, it became a huge hit. It sold millions of copies and really transformed the field. Psychiatrists and many others found it very, very useful.
In 1987, there was an “in between” DSM-III & DSM-IV revision of sorts. They called it the DSM-III-R. Then, in 1994, DSM-IV came out. After DSM-IV came out, there was a lot of pushback in the field about APA grinding out a new DSM every seven years or so. The chief complaint dealt with the steep learning curve for everybody in the profession given the many changes. So the APA really put the brakes on the development of the DSM.
The APA made a decision that weren’t going to do a seven year revision cycle. They chose a loose, sort of wait and see approach. The text, you see, is considered to be a really good resource for mental health professionals about diagnosis and prevalence and such. It’s kind of like a super textbook in the sense that it’s got the top people in the APA world working on it and everyone in the profession uses it as a reference (even medical insurance billing offices). But, they’ve kept waiting, and waiting, and waiting for the DSM-V, which was clearly going to be at least 10 years or more away from DSM-IV. If it ended up being closer to 20 years between revisions, the text would have gotten very stale. That was the motivation behind the “Text Revisions.”
When they released the DSM-IV-TR, they made the decision on doing just a text revision so stakeholders wouldn’t be bent out of shape about yet another DSM that had only minor revisions the text. With the TR, the diagnostic criteria would largely go unchanged. It turned out that were only small changes due to a couple of errors that had been found in the DSM-IV.
DSM-V finally come out in 2013. With DSM-V, it was a complete recreation of all the criteria and the supporting text. They really started over in many cases. Moving forward, with the DSM-V-TR, they aren’t just fixing a few typos. They’ve actually changed some diagnostic criteria (see the section on autism below). They’ve accomplished that by engaging a process that allows for changes to be made on an ongoing basis. They found that every time they would do a revision, it’s hugely expensive across all stakeholders. It’s a big process with hundreds of people involved. They’re going to try to be more agile in how / when revisions are made going forward. So, with DSM-V-TR, there’s a mix of text revisions, changes to criteria, and a brand new diagnosis, Prolonged Grief Disorder.
Changes to the Autism diagnostic criteria
When the APA went from DSM-IV to DSM-V, they created a new category from what used to be Autism, Autistic Disorder, and Asperger’s disorder. They also included some of PDD NOS and some of the sensory processing disorders. With DSM-V, they decided to consider the entire group a “spectrum” of conditions. Thus, with DSM-V, it became Autism Spectrum Disorder. I can recall the conversations with my provider around this time. Suddenly, the coders at the billing department migrated all of the separate diagnoses in my file, Sensory Processing Disorder, Sensory Integration Disorder, Aspergers, and etc into Autism. There was nothing for either my doctor or I to do. It was just a switch of the codes back then.
The new diagnosis came with three levels of severity. As Autism Spectrum Disorder was defined, there were “clusters of symptoms.” There were issues with social interaction, social engagement, awkward social reading, social cue, preoccupation with unusual interests, and/or repeating words. The APA believed that there were two separate dimensions of the autism spectrum, so the criteria set was reformulated with these dimensions in mind. With this reformulation, they came up with a new assessment algorithm.
The challenge then became the huge amount of interest in autism that was generated due to what appeared to be an explosion in cases of Autism Spectrum Disorder. There was the issue of lumping previous cases into the new diagnosis, and the fact that clinicians were recognizing / diagnosing it more. Additionally, there was a belief at the APA that autism was being over-recognized due to clinicians not strictly following the guidance.
In the interim, the APA has been examining the diagnostic criteria sets, noting that the prevalence often depends upon how the clinician constructs the criteria set. So when you have a criteria set, for example, the requires a positive result on five out of ten criteria, if you were to reduce the requirement to only three out of ten, the prevalence would go up a lot. If you were to go up to eight out of ten, you would shrink the prevalence. When the APA reformulated the autism criteria set for DSM-V-TR, they wanted to make sure that the the new criteria set was conservative (e.g., harder to obtain a diagnosis) and that the explanations for the set were crystal clear. Less is left open to interpretation or manipulation in the new diagnostic criteria and guidance.
Again, the prevalence of diagnoses is often determined by the diagnostic structure and in the original DSM-V, the APA believed that the criteria allowed too much interpretation. The DSM-V-TR now includes the words “all of the following” before the criteria to ensure that all are being met and consequently, this should result in fewer diagnoses. The APA thinks this is a good thing. Given their goal of shrinking the amount of diagnoses, I don’t think it’s a good thing at all.
Ramification of the new criteria
Autistic girls and women may be one of the first causalities of this new revision. It may lead to fewer girls and women meeting the diagnostic criteria. “With the diagnostic criteria for ASD based largely in how autism presents in males, girls can often ‘slip under the radar’ or get misdiagnosed” (Autism Awareness Australia, 2021). Already battling the male stereotype of Autism, women and girls could find themselves missing out on a diagnosis. Meeting this new criteria could be challenging for quite a few who would now be considered Level 1. Even with a better understanding of how autism presents in girls and women, we may see future DSM revisions addressing this more specifically when diagnoses for this group plummet. Oh, wait, there’s already a change.org petition out to address this issue.
Wildcard issues
We can already predict that once the new DSM goes into effect, medical insurance companies will immediately switch to the new criteria. After all, less diagnoses means less paid out. What remains to be seen is what will happen to those with a current diagnosis. Will we have to return to our care provider to be reassessed under the new criteria in order to maintain coverage? I think that will depend upon the provider and the country in which the autistic person resides.
Stay tuned…
— December 16, 2023 Note —
Some of the materials herein have made it into my book, No Place for Autism? It was released in February 2023 from Lived Places Publishing and is available at Amazon and other major book retailers worldwide.