“What ‘Being on the Spectrum' Means to Me”: How Adolescents with Autism Spectrum Disorder Understand and Explain Their Diagnoses

Background: Although ASD has wide-ranging influences on individuals’ lives, little research has been conducted to understand the personal experiences and perceptions of individuals with ASD. Research is particularly lacking during the formative years of adolescence, when one’s self-concept undergoes substantial development and changes (Sebastian, Burnett, & Blakemore, 2008). Ruiz Calzada and colleagues (2012) explored both parent and adolescent perceptions, but focused on the impact of the diagnostic label itself, rather than on experiences of the disorder and perceptions of its influence. Thus, the self-concept of adolescents with ASD and their understanding of their diagnoses remain understudied.

Objectives: To elicit and describe the experiences of adolescents with ASD as collected via semi-structured interviews, in order to understand their perceptions of their diagnosis and what “being on the spectrum” means to them. Specific research questions addressed in this paper include: (1) To what extent do adolescents describe their diagnoses in positive and negative terms? (2) How to adolescents perceive the impact of their diagnoses (e.g., permanency of symptoms and perception of others)? (3) How do adolescent perceptions of their diagnoses relate to autism symptomatology, cognitive abilities, and social functioning?   

Methods: This study examined perceptions of ASD in 15-year-old adolescents with ASD (N=48; Mean IQ=92, SD=24), using data obtained from the last time-point of a multi-site longitudinal study. Adolescents were asked a series of questions, using the family’s preferred label for the ASD diagnosis (e.g., “What does [ASD] mean to you?” and “Do you think you will always have difficulties associated with [ASD]?”). Quantitative coding was completed to capture adolescents’ responses based on yes/no categories and valence of their perceptions.

Results: In response to the question, “What does [ASD] mean to you?” 32% of adolescents responded with a predominantly negative valence (e.g., “I take things overly literally, it makes conversation harder”), 42% with solely neutral or factual material, 10% with mixed positive and negative valence, and 17% positive valence (e.g., “It helps me feel like an individual and think outside the box”). The sample was mixed regarding the perceived permanency of their difficulties (33% permanent; 38% possibly permanent; 30% not permanent). The sample was also mixed regarding beliefs of how others perceive them (52% differently from their peers; 48% not differently) and the valence of these perceived differences (20% negative; 24% neutral; 40% mixed; 16% positive). Further analyses will relate adolescents’ perceptions to other facets of their functioning, including IQ, social skills, and mental health comorbidities.

Conclusions: Adolescents with ASD described a variety of perceptions regarding what it means to for them to have an ASD diagnosis and what impact the disorder has on their current and future functioning. Obtaining a better understanding of these perceptions will inform effective services for adolescents with ASD by highlighting ways in which their perceptions of their diagnoses may influence their current functioning and by targeting services to areas of perceived deficits.