Compensatory strategies that mask autism may impede diagnosis
Compensatory strategies — techniques to disguise autism — increased social integration, but were associated with poor mental health and delayed diagnosis among people with autism, according to a study published in Lancet Psychiatry.
“A small but fast-growing body of research has explored compensatory ability and the related phenomenon of camouflaging. In this research, compensation has been quantified as the discrepancy between perceived social abilities (observable behavior) and actual underlying abilities (social cognitive task performance),” Lucy Anne Livingston, MSc, of the King’s College London Institute of Psychiatry, Psychology, and Neuroscience, and colleagues wrote.
To better understand strategies underlying compensation in ASD, both in the clinic and everyday life, the researchers examined social compensatory strategies and their impact on the diagnosis and clinical outcome in adults with and without autism. The sample included adults who responded to a study advertisement that was distributed via social media and to the U.K. National Autistic Society, who reported their use and experiences of compensatory strategies via online platform.
The investigators used a novel analysis that encompassed a qualitative thematic approach to interpret participants’ responses and understand compensatory strategies in autism. They identified themes at the semantic level and quantified theme endorsement to compare compensatory strategies and their outcomes between diagnosed, self-identified and nondiagnosed groups.
Overall, 58 adults with a clinical diagnosis of autism, 19 with self-identified (but not formally diagnosed) autism and 59 without a diagnosis or self-identified autism (but with social difficulties) completed the online study questions.
Livingston and colleagues found that multiple compensatory strategies with distinct characteristics, individual and environmental factors may affect compensatory strategy use and success.
The findings indicated that both positive and negative outcomes were tied to compensatory strategy use. Specifically, compensatory strategies were linked to increased social integration, independence and employment, as well as poor mental health and delayed autism diagnosis. In addition, the researchers reported that participants without an autism diagnosis used compensatory strategies similar to those with a diagnosis.
“Overall, analysis of rich data in a large, heterogeneous sample generated novel insights into compensatory strategies in autism missing from previous research,” Livingston and colleagues wrote. “It is hoped that this study will prompt further discussion around and consideration of compensation in autism, in both clinical and research settings, towards improved diagnostic accuracy and support for autistic people whose difficulties are not always evident at the behavioral surface.”
An important question for future research is whether subjective distress should be listed in the diagnostic criteria for ASD, Julia Parish-Morris, PhD, Center for Autism Research at Children’s Hospital of Philadelphia, wrote in a related comment.
“For example, DSM-5 could be revised to read: ‘Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning [including subjective distress],’” she wrote. “This change would codify the experience of individuals with autism who function in the typical range, but do so through intense compensation that causes subjective distress. Autism has traditionally been defined via observable behavior, but it seems high time to explore unseen aspects of the autistic experience.” – by Savannah Demko
Disclosure: The authors and editorial author report no relevant financial disclosures.