Understanding the psycho-social context for a new early intervention for resistance to change that aims to strike a beneficial balance between structure and flexibility

Abstract

Background Emotional and behavioural problems linked to changes to expectations – resistance to change – are linked to disability in neurodevelopmental disorders, including autism spectrum disorder (ASD), Prader-Willi (PWS) and fragile X syndromes (FXS). Structuring routines is best practice for minimising current resistance to change. But complete structure is impractical and flexibility in early life may actually reduce later resistance by supporting cognitive development. We aimed to examine the psycho-social context of families with children at risk of developing resistance to change so as to identify design requirements for an intervention that strikes a beneficial balance between structure and flexibility. Methods Thirty-six caregivers of children aged 4–12 years (17 ASD, 15 PWS, and 4 FXS) took part in an interview designed collaboratively with 12 professional stakeholders. Results Children need to feel like they are in control of flexibility but they also need support in choice making, understanding plans (using individually tailored visuals) and anxiety reduction. Caregivers need an accessible approach that they have full control over, and which they can tailor for their child. Caregivers also need clear guidance, education and support around structure and flexibility. Conclusions We propose a digital approach which addresses the needs identified. It tackles the most perplexing challenge by presenting flexibility to children in the context of a game that children can feel they have full control over, whilst caregivers can maintain control in reality. Furthermore, individualised support for children and caregivers would be enabled.

Examining the relationship between cognitive inflexibility and internalizing and externalizing symptoms in autistic children and adolescents: A systematic review and meta‐analysis

“…One approach that explicitly targets CI and executive functions such as planning and organization is called “ Unstuck and On Target!” (Cannon et al, 2011 ), developed for educators to deliver in classroom settings for autistic students aged 8–11 years without intellectual disability, to support students in learning and utilizing their skills to increase flexibility in real‐life (Kenworthy et al, 2014 ). To increase children's perceived sense of control over flexible decision making in a nonthreatening way, the use of gamified digital platforms that have clear visual cues may help children more easily access, engage with, and adhere to new intervention approaches (Blackwell et al, 2021 ). Supporting autistic adolescents to internalize flexible thinking can shape their resilience and potentially buffer against adversity, such as family stressful life events, and support them to navigate more complex situations by better balancing self‐regulation and goal‐oriented behaviors (Scarpa et al, 2021 ).…”