Outcomes of Early Intervention for Families of a Child with ASD: Perceptions of Parents and Professionals

Background:  Both research and policy mandates have recently focused on identifying desired outcomes of early intervention (EI) for participating families. Given the unique needs of families of a child with an autism spectrum disorder (ASD), it is important to identify outcomes that may be specific to these families.  

Objectives:  The purpose of this study was to identify desired outcomes of EI for families of children with ASD and to examine whether parents of a child with ASD differ from ASD professionals (researchers, service providers, EI agency personnel) in their perceptions of the relative importance of identified outcomes. 

Methods:  As part of a larger study, diverse EI stakeholders in the state of New York and national experts in ASDs participated in a two-phase Concept Mapping process (Kane & Trochim, 2007). In the first phase, participants generated n = 354 items reflecting desired outcomes of EI for families of a child with ASD. A subset of participants from the first phase (n = 74) then rated a reduced set of 51 items in terms of their importance and likelihood of being accomplished.

Results:  Principal Components Analysis of importance ratings by all participants: Five components comprising a minimum of 4 items each and collectively explaining a total of 58% of the variance could be clearly interpreted. Findings suggested that EI should accomplish the following important outcomes for families of children with ASD: families will (a) have the knowledge and skills needed to participate in decisions about services and treatments for their child; (b) be connected with other ASD families and the community; (c) have specific skills related to parenting a child with ASD;  (d) be able to deal effectively with challenging behaviors that affect their child’s and family’s participation in typical activities; and (e) have stronger bonds within the  family.

Importance ratings: Mean item ratings by parents (n=23) correlated r = .75, p < .001 with mean item ratings by professionals (n=50; one individual did not specify his/her role), indicating relatively high agreement. Notable differences emerged, however. The items showing the most discrepant ratings across groups, with parents rating the importance over 0.5 point higher (on a 5-point scale) than professionals, had to do with families being able to explain their child’s unique qualities to professionals (t(1,72) = 2.7, p < .01) and parents becoming knowledgeable about different treatments for ASD (t(1,72)  = 2.8, p < .01).

Conclusions:   There are at least five distinct and important categories of outcomes for families of children with ASD; EI providers should be cognizant of these so as to better ensure that they will be achieved.  Differences in importance ratings by parents and professionals suggest that in their interactions with parents, EI professionals may put greater effort into drawing out what parents perceive to be unique information about their child and may provide parents with more information about the effectiveness of different treatment options.

Kane, M., & Trochim, W. M. K. (2007). Concept mapping for planning and evaluation. Thousand Oaks, CA: Sage Publications, Inc.