Variable patterns of daily activity participation across settings in autistic youth: A latent profile transition analysis

Abstract

Participation in daily activities is often linked to functional independence and well-being, yet individual variability in participation and factors associated with that variation have rarely been examined among autistic youth. We applied latent profile analysis to identify subgroups of youth based on parent-reported activity participation frequency at home, school and community, as well as associations with youth characteristics, family demographics and environmental supportiveness among 158 autistic youth (aged 11–14 years at baseline). Three-, three- and two-profile solutions were selected for home, school and community settings, respectively; the most prevalent profiles were characterized by frequent home participation (73%), low participation in non-classroom activities at school (65%) and low community participation, particularly in social gatherings (80%), indicating participation imbalance across settings. More active participation profiles were generally associated with greater environmental support, higher cognitive and adaptive functioning and less externalizing behaviour. Latent transition analysis revealed overall 75% stability in profile membership over approximately 1 year, with a different home participation profile emerging at the second time-point. Our findings highlighted the variable participation patterns among autistic youth as associated with individual, family and environmental factors, thus stressing the need for optimizing person–environment fit through tailored supports to promote autistic youth’s participation across settings. Lay abstract What people do or engage in in their daily lives, or daily life participation, is often linked to their state of being happy and healthy, as well as potential for living independently. To date, little research has been conducted on daily activity participation by autistic youth at home, at school or in the community. Learning more about individual differences in participation levels and what might influence them can help to create custom supports for autistic youth and their families. In this study, 158 caregivers of autistic youth were asked how often their children took part in 25 common activities at two assessments, about one year apart. The analysis showed three profiles for each of the home and school settings and two profiles for the community setting. These profiles reflected distinct patterns in how often autistic youth took part in various daily activities, particularly in doing homework, school club activities and community gatherings. Most autistic youth were in profiles marked by often taking part at home but less often at school and in the community, and about three-fourths of them tended to stay in the same profile over time. Autistic youth with limited participation profiles were more likely to have lower scores on measures of cognitive ability and daily life skills and more challenging behaviour, and faced more barriers in their environment. These findings show how important it is to think about each autistic person’s strengths and weaknesses, and changing needs, to better support their daily life participation.

Trajectories of adaptive functioning from early childhood to adolescence in autism: Identifying turning points and key correlates of chronogeneity

“…This study focused on the PEM-CY frequency scale assessed twice between ages 12 and 17 years, where caregivers were asked to rate how often their child participated in each of the activities over the past 4 months (0 = never to 7 = daily). The internal consistency of the frequency scales derived from the current sample was low (α = 0.52 to 0.68; Chen et al, 2023), indicating that the items should be analyzed individually rather than aggregated into summary scores. The higher of the item-level scores across the two time-points were used as distal outcome variables for further analysis.…”

“…These findings indicate that at least a subpopulation of Autistic people who follow more adaptive pathways actively participate in a variety of daily activities across settings in adolescence, which may be connected to their functional independence and successful transitions to adulthood (Myers et al., 2015 ; Weiss et al., 2021 ). However, additional support or adaptation may be needed in less structured or unfamiliar settings (e.g., community) to ensure person‐environment fit that potentiates Autistic people's participation in various aspects of life, considering their individual strengths and needs (Chen et al., 2023 ; Lai et al., 2020 ; Szatmari et al., 2021 ).…”

Social drivers of health in communicative outcomes of racially and ethnically minoritized autistic adolescents and adults

“…For autistic individuals, the extent to which environments are supportive is key (Lai et al, 2020). In adolescence, environmental supports play an important role in social communication and real-world communication (Chen et al, 2023). In post-secondary settings, others may not know how to communicate with autistic adults, leading to poor environmental fit (Billstedt et al, 2010).…”

Why can’t children with autism integrate into society in China? Study based on the perspective of NGO classification

“…But they are often in a "helpless" state because of digital competition, On the Tencent 99 Charity Day 7 , labor and wealth are wasted, completely losing their original intention. Now, to obtain funds, one has to donate steps and draw small red flowers.…”

“…This stage is critical for cognitive function, social interaction, and personality development (6). At this stage, improving the ability of autistic children to take care of themselves, adapt to society, and participate in social life can create opportunities for subsequent inclusive education, employment, etc., thus substantially changing their future life (7)(8)(9)(10)(11). The International Classification of Functioning, Disability and Health (ICF) model provides a clear, comprehensive and universal concept of disability, namely impairment of body functions and structures, bad activities and limitation of participation (12).…”