Date Presented 04/01/2022

Illness identity is the perception people develop about themselves in relation to their health condition and how it integrates into their identity and daily life. Some individuals with autism negatively perceive their diagnosis and try to distance themselves from the autism label. That may affect their psychological and social quality of life. OTs have an essential role in promoting positive illness identity perception in this population.

Primary Author and Speaker: Liron Lamash

Additional Authors and Speakers: Sonya Meyer

PURPOSE: The study aimed to describe illness identity profiles of individuals with autism and to examine the relationships between the illness identity components and health-related quality of life (HRQoL). Identity is perceived as the degree to which individuals integrate different self-assets into a coherent sense of self and how it is translated ino their daily life. Identity development processes are frequently more complicated for individuals with autism. Some perceive their diagnosis as unfavorable and try to distance themselves from the autism label, while others focus on their strengths as a result of their diagnosis (Cooper et al., 2017). Illness identity refers to the role and attitudes people develop about themselves in relation to their health condition and how it is becomes integrated into their identity and daily life (Yanos et al., 2010). The Illness Identity Questionnaire (IIQ) (Oris et al., 2016) was developed to shed light on the degree to which a chronic health condition affects the way people think about themselves. The IIQ describes four components of illness identity: rejection, engulfment, acceptance, and enrichment. Research concerning identity among individuals with health conditions is emerging (e.g., Luyckx et al., 2018) but the current study is the first among individuals with autism. The IIQ was adapted for use in individuals with autism, and its first use is shown in this study.

DESIGN: This cross-sectional study included 23 individuals aged 19-47 years (M age = 28.29, SD = 8.9) diagnosed with autism. Paticipants were recruited via an organization that accompanies individuals with autism to transition and integrate in the work world.

METHOD: A link to an anonymized online questionnaires form created using Qualtrics™ and sent to potential particpants. Respondents signed online consent and completed basic demographics, the IIQ (Oris et al., 2016), and the World Health Organization Quality of Life (WHOQoL; WHO, 2004). Descriptive statistics were used to present the demographic variables and illness identity profiles. T-tests and Cohen’s d were used to assess the differences between IIQ components. Pearson correlations were conducted to assess the relationships to HRQoL.

RESULTS: No significant difference was found between the total positive feelings and the negative feelings of the participants towards their autism. However, in assessing every component separately, they presented significantly higher acceptance feelings than rejection [t(22) = -2.45, p < .05, d = .49], engulfment [t(22) = 2.79, p < .05, d = .60], and enrichment [t(22) = 4.23, p < .01, d = .92]. Significant correlation was found between the IIQ and WHOQoL mean scores [r = .56, p < .05] so the more positive illness identity perception was reported, the better reported HRQoL. Further analyses revealed that more positive illness identity perception significantly correlated with better psychological QoL [r = .62, p < .01] and better environmental QoL [r = .62, p < .01], and more negative illness identity perception significantly correlated with lower social QoL [r = -.62, p < .01].

CONCLUSION: In this group of individuals with autism acceptance was the higher-rated perception towards their autism diagnosis compared to a enrichment or a negative perception. Positive perception of their autism correlated to better psychological and environmental HRQoL, and negative perception correlated to lower social HRQoL. These findings highlight the important role of occupational therapists in understanding the ability of this population to cope with their chronic diagnosis in order to address and promote their HRQoL.


Cooper, K., Smith, L. G., & Russell, A. (2017). Social identity, self-esteem, and mental health in autism. European Journal of Social Psychology, 47(7), 844-854.

Luyckx, K., Oris, L., Raymaekers, K., Rassart, J., Moons, P., Verdyck, L., ... & Mark, R. E. (2018). Illness identity in young adults with refractory epilepsy. Epilepsy & Behavior, 80, 48-55.

Oris, L., Rassart, J., Prikken, S., Verschueren, M., Goubert, L., Moons, P., ... & Luyckx, K. (2016). Illness identity in adolescents and emerging adults with type 1 diabetes: introducing the illness identity questionnaire. Diabetes Care, 39(5), 757-763.

World Health Organization. (2004). The world health organization quality of life (WHOQOL)-BREF (No. WHO/HIS/HSI Rev. 2012.02). World Health Organization.