A conceptual framework for understanding characteristics of selfawareness associated with autism spectrum disorder

Developmental Disabilities

Mette Elmose, Department of Psychology
University of Southern Denmark

Introduction: Self-awareness has been investigated both theoretically and empirically by a wide range of disciplines (1-3). This has included the exploration of self-awareness among specific clinical groups, such as patients with right-hemisphere stroke, frontal lobe damage, schizophrenia, and autism. Still, a comprehensive model of self-awareness is lacking (3), and even the functional importance of self-awareness has not yet been established (4). The lack of a comprehensive model of self-awareness limits the current understanding of variations in and deficits of self-awareness. Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by difficulties with social communication and interaction as well as by repetitive patterns of behavior, interest, or activity, including differences in sensory responses (5). Specific characteristics of self-awareness are not specified in the current diagnostic criteria. However, the term autism—which was first coined in relation to schizophrenia—comes from the Greek autos meaning “self”; Asperger’s (6) and Kanner’s (7) early and defining descriptions suggest variations in awareness of the self among their original cases (8). Subsequent clinical descriptions, autobiographies, and other types of contributions by individuals on the spectrum, as well as parent reports, indicate that there seem to be very relevant differences possibly related to self-awareness that can often be linked to some of the everyday difficulties associated with ASD. In line with the notion of a spectrum of disorder is the fact that the indicated differences appear very heterogeneous with regard to their expression and how people on the spectrum experience them. Differences in self-awareness may, for example, encompass the following: the sense that you do not know what you do not know and therefore have difficulty judging when it would be relevant to get more information; difficulty distinguishing between your own or others’ preferences and moods when you are together with them; perceiving your own actions (e.g., not being able to get out of the door in time for school, self-destructive actions) as “freestanding” actions without any link to antecedents, current situation, others’ reactions, or your own thoughts or feelings. Addressing the concept of self-awareness and its potential differences among individuals with ASD should not be perceived as a devaluation of or a challenge to the validity of either the self-awareness or the selfhood of persons with ASD. Self-awareness and the experience of self are unique and valid for all persons. However, for each individual, the concept of the self and self-awareness may be more or less efficient for helping individuals to navigate in the world in a way that supports his or her everyday needs, helps him or her to reach goals, and meets his or her personal values. Insight into the characteristics and mechanisms of self-awareness may help people of all degrees of ability to calibrate this fine instrument and thereby improve their ability to navigate and manage the challenges of life. The aim of this short paper is to sketch a conceptual framework for describing self-awareness to begin to integrate the accumulating knowledge about characteristics of and variations in self-awareness related to ASD. The formulation of a conceptual framework is important as a future common ground for the design and interpretation of new studies, theoretical discussions, and clinical work. It is especially important that the framework encompass the wide individual variation in self-awareness that may characterize ASD due to the heterogeneity of the condition. The framework presented consists of different putative levels and dimensions of self-awareness that are identified in selected theoretical contributions. It aims to span not just the “what” of self-awareness but also the more procedural and functional aspects of “how” and “when.”