Parent and professional perspectives on behavioral inflexibility in autism spectrum disorders: A qualitative study

Abstract

Restricted and repetitive behaviors (RRBs) are a core feature of autism spectrum disorder (ASD), however, research on the functional impact of these behaviors on the quality of life for individuals with ASD and their families remains scarce. We conducted focus groups with parents of children with ASD and clinicians in order to better characterize the functional impact of behavioral inflexibility (BI), which represents one potential dimensional construct that could account for the breadth of behaviors comprising the RRB domain. Transcripts of the focus groups were analyzed using qualitative analysis coding methods to determine parent and clinician beliefs on a range of issues related to BI including overall impact, types of child behaviors, and strategies for managing BI. Thematic analysis revealed that parents and clinicians view BI as an important behavior that impacts multiple areas of functioning, relates to other RRBs as well as social communication behaviors, and warrants targeted treatment. Notably, many parents and clinicians emphasized some positive consequences of BI as well. These findings add crucial insights into the functional impact of BI and RRBs as a whole, and suggest that BI represents an important avenue for future research.

The Impact of COVID-19 Restrictions on Psychological Distress in Family Caregivers of Children with Neurodevelopmental Disability in the UK

“…This uncertainty also extended to schooling and respite services, with caregivers unable to provide concrete dates to the children. The difficulties experienced may be associated with a rigid cognitive style and a lack of psychological flexibility, sometimes characteristic of individuals with autism (Fujino et al, 2019 ; Sethi et al, 2019 ). The study results corroborate and extend the finding that lack of respite and support has led to increased challenging behaviours in children and psychological distress in caregivers during the COVID-19 pandemic (Courtenay & Perera, 2020 ).…”

Modeling flexible behavior in childhood to adulthood shows age-dependent learning mechanisms and less optimal learning in autism in each age group

“…The computational differences in ASD appear to manifest as pronounced difficulties when the environment is less volatile, and learning when to ignore probabilistic feedback is as important as tracking change. These difficulties may underpin the marked difficulties with minor (probabilistic) deviations in routines or unexpected changes in ASD that caregivers so frequently report [ 73 ]. In different environments, faster learning may manifest in strengths; these differences have important implications for intervention development.…”

Development of the Behavioral Inflexibility Scale for Children with Autism Spectrum Disorder and Other Developmental Disabilities

“…Frequency of codes across all transcripts was analyzed using a Thematic Analysis approach [ Braun & Clarke, 2006 ] to derive a set of 21 themes that consistently emerged from both the caregiver and clinician focus groups (e.g., restricted engagement in activities, development of routines or rituals, impact on social functioning, family accommodation, child stress, caregiver stress). More information on the focus group process and results is available in a previous paper by our group [ Sethi et al, 2018 ].…”

“…In addition to the scree plot [Cattell, 1966], the Hull method, item and global unidimensional congruence indices, item and global explained common variance indices, and item and global residual absolute loadings indices all suggested a unidimensional solution [Lorenzo-Seva, Timmerman, & Kiers, 2011;Ferrando & Lorenzo-Seva, 2017b]. Specifically, the global unidimensional congruence index was 0.99 (exceeding the criterion of 0.95); the global explained common variance was 0.94 (exceeding the criterion of 0.85); and the mean of item residual absolute loadings was 0.15 (which is lower than the cutoff threshold of 0.30) [Ferrando & Lorenzo-Seva, 2017a, 2017b2018]. Moreover, only a small fraction of individual items showed deviations from item-level unidimensionality criteria, and when this occurred, the deviations were small in magnitude.…”