Caregiver's Perspectives on the Sensory Environment and Participation in Daily Activities for Children with Autism Spectrum Disorders

Background: Participation in daily activities is the context in which children acquire valued life skills and competencies (Dunst, 2002; Law, 2002), and as such is an important factor in development, health, and quality of life (WHO, 2009). Caregivers support a child’s participation in order to facilitate growth and skill development, ultimately leading to their independence in daily activities. Although participation in these everyday activities is considered routine for most young children and their families, it is often more challenging for children with Autism Spectrum Disorders (ASD). Children with ASD and their caregivers face barriers within the environment due to unique characteristics of ASD that reduce the number and diversity of activities in which they participate (Bedell et al., 2012; Law et al., 2013). For example, it is estimated that up to 95% of individuals with ASD have unusual reactions, such as hyper- and hypo-reactivity to sensory stimuli in the environment (Ben-Sasson et al., 2009).  Research identifies differences in sensory processing as a risk factor for limitations in participation (Bar-Shalita, Jean-Jacques & Shula, 2008). This reduced engagement may negatively impact the development and quality of life of the child with ASD. 

Objectives: The objective of this study was to explore participation in daily activity among families of children with ASD and the perceived influence of sensory environments. Specifically, the study explored the sensory environmental factors that enhance or limit participation, as well as the methods parents or caregivers use to support participation for their child.   

Methods: A phenomenological design was used to guide data collection and analysis of recorded interviews from 34 caregivers of children with ASD ages 3 to 7. Data collected for the study included semi-structured interviews, member checks, and demographic information. Interviews were transcribed and crosschecked. Two or more researchers analyzed the data to ensure the reliability of the analysis. Descriptive statistics were used to analyze demographic information.

Results: Qualitative analysis identified reoccurring themes that describe the impact of the sensory environment on participation in the young child with ASD, as well as a parental decisional-making process and strategies to support participation. Participants reported that environmental match was important in enabling their children’s participation. Caregivers described a participation decision-making process in which they distinguished between essential and non-essential activities. Additionally, the amount of effort required by the parents to enable their child’s participation was a key factor in deciding what activities parents would prioritize for their children. There were 6 common strategies implemented by caregivers to improve person and environment fit necessary to enable participation. Strategies either directly related to the sensory factors of the environment, or focused on reducing behavioral responses associated with sensory factors.

Conclusions: This study identifies important considerations to enhance participation in the home and community environments for the child with ASD including the decision making process of the family and strategies integrated into daily routines to improve environmental fit.