A New Tool to Assess Family Context Features That Promote the Early Development of Young Children at-Risk for ASD

Background: Recent studies confirm the importance of a high-quality family context for promoting children’s early development, even after adjusting for socioeconomic variables (e.g., Rijlaarsdam et al., 2013). Although these studies have examined the role of home environment and family context in typical development, there is likely an effect for children with Autism Spectrum Disorder (ASD) as well. This is especially true as children with ASD often participate in early intervention programs (EIPs) at home setting, with families serving as an integral part of the intervention team. The Etxadi-Gangoiti Scale is a recently published, validated measure designed to assess the family context of typically developing children (Arranz et al., 2014; Velasco et al., 2014). However, some questions are inappropriate for children with ASD (see examples in Table 1).

Objectives: To adapt the Etxadi-Gangoiti Scale for use with families of young children with ASD and assess comprehension, clarity, and familiarity at the community level, as well as feasibility in an EIP.

Methods: We adapted the scale considering early ASD developmental features and in-home EIP delivery. Four experts in early development and ASD analyzed the scale content. We conducted two community focus groups: (1) 6 EIP providers (psychology, education, and nursery disciplines) serving urban and rural areas, and low-medium resource children with ASD. (2) 5 parents of children with ASD (4 mothers, 1 father; 3 African American, 2 Hispanic) living in urban areas. Forty percent reported living in somewhat unsafe neighborhoods. Both groups scored each item for the level of comprehension, clarity, and familiarity using a 6-point Likert scale (1=Very hard to understand, 6=Very easy to understand). Items receiving a score of 4 (somewhat easy to understand) or lower were discussed and edited as a group to obtain consensus. Lastly, edited items were scored a second time using the same metric. Providers scored the feasibility of the scale in an EIP.

Results: The adapted scale includes 62-items in two subscales: a) caregiver self-report (47 items); b) observational assessment for EIP providers (15 items). The scale measures family features associated with promoting early development, summarized by 8 indicators (see items’ distribution across indicators and subscales in Figure 1): 1) Home and physical environment; 2) Presence of toys to promote development; 3) Family routines, structure and habits; 4) Parent behaviors promoting socio-emotional, communication, play, and cognitive development; 5) Exposure to peers; 6) Family and social support 7) Level of family stress; 8) Caregiver’s knowledge and exposure to disability. Parents’ rated 14 items (30%) with a score of 4 or lower. After editing, they scored 5 or higher for all items. The Provider group edited 8 items (53%) based on initial scores, and after discussion, all items reached the highest comprehension score of 6. Regarding the tool’s feasibility in EIPs, 83% of providers scored “strongly agree.”

Conclusions: Existing home and family assessment scales are not appropriate for young children with ASD feasible for in-home EIPs. This scale may help us understand how to individualize ASD treatment and parent coaching strategies for unique family features and environments.