Aligning Perspectives: Autism Identity, Independence, Participation, and Quality of Life in Autistic Adolescents Through Self and Parental Reports

In this quantitative, cross-sectional study, data were collected at a single point in time, providing a snapshot of the relationships between the variables. Participants were recruited using a convenience sampling method.

An a priori power analysis (conducted using G*Power) indicated that 64 participants (32 per group) were needed to achieve adequate power (0.8) with an alpha level of 0.05. The final sample included 30 dyads of autistic adolescents and one of their parents. The adolescents were aged 13 to 18 years (M = 16.32, SD = 1.42), 27 of whom identified as male (90%) and three identified as female (10%). Based on information obtained from school records or parent reports, all participants had typical intellectual functioning (IQ within the average range), had been classified as requiring Level 1 support for verbal communication (indicating minimal support needs), and had sufficient reading and writing skills to independently complete the self-report questionnaires and provide informed consent for participation in the study. However, no information was collected regarding support levels in other social communication or adaptive functioning aspects. All adolescents had been diagnosed between the ages of 1 and 14 years (M = 7.70, SD = 4.42) and were informed of their diagnosis between the ages of 6 and 17 years (M = 11.88, SD = 2.73). The time gap between when parents received the official diagnosis and when they disclosed the autism diagnosis to their child ranged from 0 to 12 years (M = 4.20, SD = 3.79). Educational placements included 16.7% in regular classrooms, 6.7% in regular classrooms with an aide, 66.7% in specialized communication classrooms within mainstream schools, and 10% in special education frameworks. Most (90%) participants lived in urban areas, and 10% lived in rural areas. The parent group comprised 25 mothers (83%) and five fathers. Regarding parental education, 63.3% of mothers had an academic degree, 16.7% had professional training, and 20% had completed high school. Similarly, 50% of fathers had an academic degree, 30% had professional training, and 20% had completed high school.

Both self-report versions for adolescents and parent-report versions were used for all questionnaires used in the methodology.

The study received approval from the University of Haifa’s Ethics Committee and the Chief Scientist at Ministry of Education in Israel. We conducted recruitment through educational settings for autistic adolescents, including inclusive regular classrooms, specialized classrooms for autistic students within regular schools, and special education schools. School staff distributed an online information letter to parents of potential participants detailing the study and its importance. Adolescents and their parents who were interested in participating provided online informed consent and completed the questionnaires on the institutional Google Forms platform, which is protected by two-factor authentication to ensure data security and confidentiality. Responses were submitted anonymously and automatically transmitted to the database. The dyads were matched using a serial number and the adolescent’s initials. Google Forms saved only fully completed questionnaires, preventing our assessment of the number of participants who dropped out during the questionnaire process.

The data were analyzed using IBM SPSS (Version 27.0). Cronbach’s alpha (α) was used to assess the tools’ internal consistency in the current sample. Descriptive statistics were calculated for the study population and measurements. An intraclass correlation coefficient (ICC) analysis was performed to evaluate the agreement between adolescents’ and parents’ ratings. A two-way mixed-effects model with an absolute agreement definition was used to determine the ICC values. A paired t-test and Cohen’s d assessed differences between adolescent and parent responses on the IIQ. Pearson correlation analyses examined associations between autism identity perception, functional autonomy, social participation, and quality of life.

Only the adolescents’ self-reported data were used to assess the associations between their perceptions of autism identity and various health-related outcomes, including functional autonomy, social participation, and QoL.

The descriptive findings from the DRA questionnaire reveal a complex relationship between perceived levels of independence and the desire for greater autonomy among autistic adolescents. The adolescents reported relatively high levels of independence in basic self-care and routine activities. However, they did not express a desire for greater autonomy in these areas, suggesting they may be content with their current functioning level, experience apprehension, or lack confidence with more complex aspects of daily life (Hume et al., 2021).

The DRA also highlights disparities in more complex or multistage activities, such as social or leisure activities. Here, adolescents reported lower levels of independence but demonstrated a moderate desire to increase autonomy. This indicates that although adolescents may recognize their limitations in these more advanced functional domains, they are also willing to develop greater independence. Such findings align with broader research suggesting that autistic adolescents often struggle more with socially driven activities yet exhibit a desire for improvement in these areas, particularly as they approach adulthood and seek greater self-determination (Gotham et al., 2015).

Additionally, the DRA revealed marked differences between adolescents’ self-reports and parental reports. Adolescents consistently rated themselves as more independent than their parents perceived them, particularly in complex or multistage daily activities and social and leisure activities. This gap between self-perception and parental perception may arise from several factors. Parents often adopt a protective stance, sometimes underestimating their child’s capabilities due to concerns about safety, social norms, or the adolescent’s ability to manage independently in challenging situations (Chen et al., 2018). Alternatively, adolescents may overestimate their independence due to a desire for social conformity or a limited ability to assess their functioning accurately. Research has shown that self-assessments by autistic adolescents can sometimes reflect an overestimation of abilities, especially in areas requiring social or cognitive judgment (Cheak-Zamora et al., 2015). These differences in perception highlight the importance of integrating self- and parental reports when assessing functional independence to ensure a comprehensive and balanced understanding of the adolescent’s true capabilities and the areas where additional support may be needed.

The findings derived from the CASP-Y assessment indicate that adolescents exhibit moderate levels of social participation across various environments; however, these levels are notably lower than those of their neurotypical peers. These findings reflect the challenges many autistic adolescents encounter in social settings, particularly during unstructured social interactions or situations that demand more social complexity (Hilton et al., 2008; Potvin et al., 2013).

A key finding from our study is the discrepancy between adolescent self-reports and parental assessments regarding social participation. Adolescents frequently rated their participation levels higher than their parents, particularly in community and social activities. This divergence may reflect differences in how each group perceives and interprets participation. Adolescents may focus on their internal social interaction experiences, whereas parents often base their reports on visible social behaviors and challenges (Eiser & Varni, 2013; Stokes et al., 2017). Moreover, driven by optimism or social desirability, adolescents may wish to present themselves as more socially active than they actually are, which can further contribute to the gap between self-reports and parental reports (Cheak-Zamora et al., 2015; Clark et al., 2015).

Conversely, parents may report lower participation levels due to their observations of specific social deficits or challenges the adolescent may not fully recognize. Possibly, discrepancies between the parent and adolescent reports arise from parents not fully recognizing autistic communication styles or interpreting their social participation based on conventional social norms (Kapp, 2020; Milton, 2012). Concerns about their child’s safety and social well-being often shape parental perceptions, leading parents to report their adolescent’s abilities to navigate social environments more conservatively than their children do (Chen et al., 2018; Lerner et al., 2017). These discrepancies underscore the importance of integrating both perspectives into assessments because relying solely on self-reports or parental reports may result in an incomplete understanding of the adolescent’s social functioning (L. Jones et al., 2015).

This study’s findings reveal positive and challenging aspects of the adolescents’ QoL. The autistic adolescents reported moderate to high overall QoL, particularly in the domains of emotional and social functioning. These self-reports suggest a generally positive outlook on life, consistent with existing literature that has indicated many autistic adolescents express satisfaction with their daily routines and social interactions despite facing associated challenges (McCauley et al., 2020). This relatively positive perception may indicate a sense of contentment within their social world, often shaped by their unique experiences and interactions, differing from the expectations or norms of neurotypical peers (Falkmer et al., 2015).

However, a consistent finding across this study is that adolescents’ self-reports were frequently more optimistic than those provided by their parents. Parents tended to rate their children’s QoL lower, particularly in social and emotional functioning domains. This discrepancy aligns with previous research, which indicates that autistic adolescents often perceive their QoL more positively than their parents, possibly due to differences in how they internalize or express social and emotional challenges (Potvin et al., 2015). Autistic adolescents may emphasize their subjective sense of well-being, which may not always align with the external difficulties they face, such as challenges in social participation or emotional regulation. However, social difficulties may not necessarily prevent them from reporting high QoL; self-reported well-being can reflect areas of satisfaction beyond conventional social expectations (Shipman et al., 2011).

In contrast, parents are more likely to be attuned to visible challenges, such as difficulties in forming peer relationships or navigating social environments, which often results in lower ratings of their child’s QoL (Davis & Carter, 2008). By integrating both viewpoints, a more comprehensive understanding can be achieved. This integration enables the development of interventions that address adolescents’ subjective experiences while acknowledging the observable challenges identified by their parents (Sheldrick et al., 2012).

The current study reveals that adolescents who exhibited higher acceptance scores on the IIQ, indicating that they view autism as an integral and positive part of their identity, reported higher levels of autonomy and social participation. This positive identification with autism likely fosters greater self-confidence and a willingness to engage independently in daily and social activities, directly enhancing their overall QoL (R. Cooper et al., 2021). Conversely, adolescents with higher engulfment scores, which indicate they perceive autism as an overwhelming and dominant aspect of their identity, demonstrate lower autonomy and social participation levels, which may negatively impact their emotional well-being. This finding aligns with prior research that demonstrated adolescents who perceive their condition as engulfing may internalize societal stigma, reduced self-efficacy, heightened emotional difficulties such as anxiety or depression, and greater difficulty navigating social situations (R. S. P. Jones et al., 2014; Oris et al., 2018).

These emotional challenges, in turn, can create barriers to autonomy and participation, as adolescents may feel less capable of managing everyday tasks or engaging with peers in meaningful ways (Shochet et al., 2016). Additionally, the relationship between engulfment and lower participation suggests that adolescents who feel their autism dominates their identity may avoid social activities out of fear of rejection or misunderstanding, further limiting their opportunities for personal growth and social integration (Cage et al., 2018).