THIS ARTICLE IS MORE THAN FIVE YEARS OLD
This article is more than five years old. Autism research — and science in general — is constantly evolving, so older articles may contain information or theories that have been reevaluated since their original publication date.
Five years ago, a new diagnostic category, ‘social communication (pragmatic) disorder,’ made its debut in the DSM-5, the latest version of the “Diagnostic and Statistical Manual of Mental Disorders.” I was a skeptic: I argued, along with many others, that there simply was not enough evidence for the existence of this condition.
I was also concerned that the category would renew the practice of assigning vague diagnoses, such as pervasive developmental disorder-not otherwise specified, in place of autism, just when the DSM-5 seemed to have put an end to it.
That worry never materialized. And I’m still not sure it’s a useful diagnostic category.
Social communication disorder (SCD) just never caught on among either researchers or clinicians. As a result, the designation seems largely superfluous. Clinicians rarely use the SCD diagnosis, and when they do, those who receive it may feel at loose ends due to a paucity of information about the condition.
People who have the problems associated with the condition often qualify for a more established diagnosis that is associated with useful supports and therapy.
Since the DSM-5 appeared in 2013, research on autism has flourished. At last count, more than 10,000 papers have the term ‘autism’ in the title, according to PubMed. In comparison, there are just 10 papers on ‘social communication disorder.’
Before SCD was introduced, clinical researchers, mostly speech-language pathologists, were diagnosing some children with ‘pragmatic language impairment’ or ‘semantic-pragmatic disorder’ to capture their difficulties interpreting and using language appropriately in social contexts. But these terms were not part of the DSM, and despite being around now for more than 20 years, they have made little impact on the scientific literature or clinical practice.
Entry into the DSM with a more promising name has not changed anything: There are no new assessment tools, no clearer diagnostic criteria, no stronger evidence for the existence of the condition and no innovative, effective interventions.
This is not to say that pragmatic impairments don’t exist. On the contrary, they appear prominently as a core feature of autism and as a co-occurring condition for many children and adults with neurodevelopmental conditions such as Williams syndrome, spina bifida and attention deficit hyperactivity disorder.
The problem is that these kinds of language problems sit alongside other behavioral or language difficulties, and, from a clinician’s perspective, they are not the primary concern.
I conducted an informal, completely unscientific poll of 10 colleagues (including two members of the DSM committee that introduced SCD) who regularly diagnose children with autism or other developmental conditions. All but one said they essentially never use the SCD diagnosis.
Their reasons vary. In some cases, the children were too young; according to the DSM-5, a minimum age of 5 is needed to diagnose these kinds of problems. In others, a child who at first seemed to fit the profile later turned out to have other language deficits or mild repetitive behaviors, both of which are exclusionary criteria. Some of my colleagues were worried the label would exclude children from autism therapies from which they would benefit — and so on.
Whatever the reason, most expert clinicians do not find the new diagnosis necessary or useful.
In January, I received an anguished letter from a middle-aged man who had just been diagnosed with SCD. The man agreed with the diagnosis, but he said it left him feeling as if he had been stranded on “the island of misfit toys.” He could find no support group, no services and no therapy for people who have SCD but not autism.
This letter reminds us that the introduction of SCD has affected people’s lives, but instead of paving the way to a solution, the diagnosis excludes them from a community and resources they desperately want and need.
How can we move away from the limbo that a diagnostic category of SCD has created? Ideally, the entire DSM would be based on a more dimensional approach in which clinicians identify traits that cut across diagnostic categories. But this too has not caught on in the clinical world. Until there are supports and services available for people with SCD, clinicians should consider alternative diagnoses.
I could be wrong. Perhaps it is just taking time for the new category to become a mainstream diagnosis. Five years from now, there could be a surge of new research and much-needed resources. For now, however, I remain a skeptic.
Helen Tager-Flusberg is professor of psychological and brain sciences at Boston University, where she directs the Center for Autism Research Excellence.