Seeing the unseen realities of autism
Authors: Julia Parish-Morris
Journal: The Lancet Psychiatry (2019)

Are you 100% authentically yourself, in every context, without thinking about how to change your behaviour to facilitate relationships with other people? The answer is probably "no". In The Lancet Psychiatry, Lucy Livingston and colleagues1Livingston LA Shah P Happé F Compensatory strategies below the behavioural surface in autism: a qualitative study.Lancet Psychiatry. 2019; (published online July 23.)http://dx.doi.org/10.1016/S2215-0366(19)30224-XPubMed Scopus (78) Google Scholar used a qualitative thematic approach to explore various aspects of social–cognitive compensation, including strategies to support social interaction, moderating factors that affect compensation use and success, and associated positive (and negative) outcomes in adults with and without autism spectrum disorder. From a generalisation perspective, it is unusual that the sample was heavily biased towards late-diagnosed adult women, but as an information-gathering mission it proved a rich place to form hypotheses for future testing in larger and more balanced studies. The inclusion of a group that did not have a formal diagnosis and did not self-identify as autistic highlighted the authors' argument that compensation is deployed by non-autistic (neurotypical) people as well. However, the line became blurred when considering deep compensation. Differentiating autism spectrum disorder from (merely) slow social learning will require an understanding of the repetitive behaviours/restricted interests domain in successful deep compensators. As noted in a recent commentary,2McPartland JC Autism's existential crisis: a reflection on Livingston et al. (2018).J Child Psychol Psychiatry. 2019; 60: 111-113Crossref PubMed Scopus (5) Google Scholar the implications of automatically deployed deep social compensation without functional impairment could trigger an existential crisis for autism spectrum disorder as a behaviourally observable diagnosis. Research on camouflage and compensation in autism spectrum disorder is emergent, but empirical studies remain notably scarce. Rigorous multimethod explorations of camouflaging and compensation in populations that are gender balanced and less dramatically self-selected than online samples of convenience are needed. Longitudinal studies, in particular, could shed light on how camouflage and compensation emerge in the context of a child's hormonal and neuronal development, as well as identify environmental contributors (eg, gendered socialisation). Cross-sectional studies of behavioural compensation should aim to quantify how it unfolds in real-world contexts. This future research direction is especially crucial because participants in the study by Livingston and colleagues reported both positive and negative effects of compensation. On the one hand, compensation allowed participants to make friends and achieve certain social goals. On the other hand, it was exhausting. Understanding the benefits—and exact costs—of camouflaging or compensating in a given situation is necessary for developing individualised approaches to support social success. The very idea of social success sparks some important questions: does everyone have to be social, and who defines success? There is debate about the extent to which autism should be treated as a disorder, with interventions aimed at teaching so-called neurotypical behaviours, versus whether the environment should change to accommodate individuals with autism (ie, appreciating neurodiversity and realising that social success might look different from person to person).3Baron-Cohen S The concept of neurodiversity is dividing the autism community.https://blogs.scientificamerican.com/observations/the-concept-of-neurodiversity-is-dividing-the-autism-community/Date: April 30, 2019Date accessed: July 1, 2019Google Scholar Livingston and colleagues' observation that compensation occurs in people without autism too suggests that it might be a general social lubricant that facilitates community living and is therefore a potentially useful tool. Perhaps bringing compensation into the light of day—by explicitly acknowledging that social interaction can be difficult and exhausting—could inspire empathy and increase understanding within a given relationship or context, thus reducing the need to compensate. In other words, perhaps raising awareness about compensation in autism spectrum disorder is an important first step towards eliminating the need for it. One important consideration that was not addressed in this study, and that has only briefly been addressed elsewhere, is the role of multiple intersecting identities on camouflage and compensatory behaviours in autism spectrum disorder.4Crenshaw K Mapping the margins: intersectionality, identity politics, and violence against women of color.Stanford Law Rev. 1991; 431241Crossref Google Scholar Autism, as it currently stands, is defined by judgments made by people in society; thus, well known influences on those judgments (which include a person's race, sex, gender, disability status, economic class, and language or immigration status) cannot be separated from efforts to identify and support individuals with autism spectrum disorder. Women, racial or ethnic minorities, sexual or gender minorities, people with disabilities or from lower economic strata, and immigrants (among others), almost surely experience greater stigmatisation for appearing autistic than do white, cisgender, heterosexual, able-bodied males with economic resources who are part of the dominant culture. The intersection of multiple overlapping marginalised identities thus creates unique pressures for people with autism spectrum disorder who are also female, or Native American, or deaf, compared with any one group separately.5Cage E Troxell-Whitman Z Understanding the reasons, contexts and costs of camouflaging for autistic adults.J Autism Dev Disord. 2019; 49: 1899-1911Crossref PubMed Scopus (113) Google Scholar All of these factors interact to produce greater expectation, necessity, and—perhaps—ability to camouflage autism, often born out of the need to survive. Importantly, camouflage (and to some extent, even variations of compensation) has long been described in a well developed literature on linguistic code-switching.6Devereaux MD Wheeler R Code-switching and language ideologies: exploring identity, power, and society in dialectally diverse literature.English J. 2012; 102.2: 93-100Google Scholar As in all areas of science, cross-fertilising two or three previously separate literatures could foster new hypotheses and produce novel insights into human behaviour. What can autism researchers learn from studies of code-switching, and from intersectional theory more broadly? These interdisciplinary topics are worthy of new research attention. Finally, an important take-away from the results described by Livingston and colleagues is that although many people compensate during social interaction, it can be an especially exhausting and distressing exercise for people with autism spectrum disorder. This finding begs the question: should subjective distress be listed in the diagnostic criteria for autism spectrum disorder? 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]."7American Psychiatric AssociationDiagnostic and Statistical Manual of Mental Disorders.5th edn. American Psychiatric Publishing, Washington, DC2013Crossref Google Scholar 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 behaviour, but it seems high time to explore unseen aspects of the autistic experience. I declare no competing interests. Compensatory strategies below the behavioural surface in autism: a qualitative studyIncreased awareness and measurement of compensatory strategy use in autism should guide future diagnostic guidelines, towards improved diagnostic accuracy and support for people with autism spectrum disorder whose cognitive difficulties are not immediately evident in observable behaviour. Full-Text PDF Open AccessNovel insights into patients' life-worlds: the value of qualitative researchIn The Lancet Psychiatry, Lucy Livingston and colleagues1 amply demonstrate the rich potential of qualitative methods to provide insight into the life-worlds of patients and analysis of hitherto un(der)explored facets of mental and physical health conditions. The publication of their paper reflects increasing acknowledgment of the value of qualitative methods in medical research. At the same time as some medical publications have questioned the wider value and impact of qualitative research,2 health and social policy3 increasingly demand engagement with the voices and perspectives of patients—something only truly understood through qualitative inquiry. Full-Text PDF Open AccessDeeper understandingGood medical practice exists at the intersection of general observation with individual experience. Even in the era of high-tech medicine, this remains the case. There is not, nor will be, any biomedical test that can determine the confluence of personal history and current circumstances that determines a person's unique state of being. Robert Burton, author of the influential 17th-century medical text The Anatomy of Melancholy, recognised the importance of the individual perspective: "that diet which is most propitious to one, is often pernicious to another, such is the variety of palates, humours, and temperatures". Full-Text PDF