NCSA Position Statement on Diagnostic Labels:
The Need for Categorical Recognition of Severe Autism in the DSM

The broadening of the construct of autism in the form of the Diagnostic and Statistical Manual (DSM-5) criteria for Autism Spectrum Disorder (ASD) in 2013, while well-intentioned, has had the effect of rendering the diagnosis essentially meaningless, as it allows for the same diagnosis to be given to wholly disparate individuals. For example, a young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors “has ASD,” while a college professor with social anxieties and some OCD also “has ASD.” This overbreadth subverts the essential purpose of psychiatric diagnostic labels: to describe a group of patients afflicted by a consistent set of impairments for the ultimate purpose of guiding meaningful interventions, services, research and betterment of health and psychosocial functioning. 

NCSA therefore joins the growing chorus of researchers, clinicians, providers, families and affected individuals urging the American Psychiatric Association (APA) to eschew a mythical unity of “ASD” and instead revise the DSM to appropriately reflect radically diverse clinical realities and patient needs. This revision should include a distinct, stand-alone diagnostic category for the growing population of patients who exhibit the following suite of pathologies, among others that may be present: severe social-communication impairments, cognitive deficits, significant challenges in attaining basic living skills (with frequent need for 24-hour supervision and care), sensory dysregulation, and maladaptive behaviors (including repetitive or “looping” behaviors). Any of the following labels, for example, may apply to this group: Autistic Disorder, Severe Autism, Profound Autism, or Classic Autism. We note that many people with severe autism access services that are mandated by state laws that contain language that directly points to the definition of ASD in the most recent version of the DSM. In order to protect access to these services, the DSM revision should explicitly state that a new stand-alone diagnostic category retains that eligibility.

We appreciate that the DSM-5 framework was crafted in response to difficulties applying consistent diagnostic labels under the DSM-IV, including Autistic Disorder, Asperger’s Syndrome and PDD-NOS. We believe this problem can be solved by attaching a broad “ASD” diagnosis provisionally to young children. This would acknowledge uncertain prognoses and help ensure access to early intervention for children with a wide range of symptoms. But we strongly believe that by approximately age 10, when trajectories stabilize and the nature and degree of impairment become more clear, a more accurate and clinically meaningful set of DSM diagnoses should apply. We take no position regarding potential diagnostic labels for other, less severe, clinical presentations that today are considered ASD under the DSM-5.

We also appreciate that the DSM-5 made an attempt to disentangle different clinical realities in the Levels of Severity matrix. This approach, however, errs by treating vast qualitative differences simply as a matter of degree along a linear scale. Moreover, the matrix only partially describes the prominent phenotypes of the severely affected cohort of patients while subsuming them into a group with strongly dissimilar presentations.

The suite of impairments described above are inextricably intertwined phenotypes, and in most cases the result of abnormalities of early neurodevelopment; there is no valid scientific or clinical reason for treating them as mere “co-morbidities” to social communication deficits. As the CDC has reported, more than 95% of autistic children suffer from at least one of these “comorbidities,” with an average of five co-occurring conditions. Individuals suffering from these extensive disabilities deserve categorical recognition, relieved of any need to compete with very different, and often far milder, clinical profiles that currently share an ASD label and have vastly different needs. 

In sum, the umbrella ASD diagnosis has marginalized a growing population of individuals whose neurobehavioral pathologies are among the most alarming and disabling in the entire field of psychiatry. A revision to the DSM is clearly needed, and we urge the APA to undertake these updates as expeditiously as possible.

Adopted by NCSA Board of Directors, October 8, 2021

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See letter from the NCSA Board and FAQs: https://www.ncsautism.org/blog//dsmrevision