Poster #47 - “Couldn’t it be Birth to Five”: Parents’ Perceptions of Early Intervention for Children with Autism

• In Event: 3-053 - Poster Session 10
  In Poster Session: PS 10 Section - Developmental Disabilities

Integrative Statement

Research indicates that family-centered early intervention (EI) is most effective (Bruder, 2000; Dempsey & Keen, 2008; Dunst et al., 2007; Farrell, 2009). While the most effective interventions are informed by parents’ needs and goals (e.g., Dempsey & Keen, 2008), interventions do not always include parents’ perspectives in the planning and evaluation phases, and some research indicates that parents of children with autism spectrum disorder (ASD) may be dissatisfied with aspects the interventions they are receiving (Coogle et al., 2013; Epley et al., 2011). Parents of children with ASD may have significantly different experiences and outcomes in EI (Bougher-Muckian, Coogle, Floyd, & Root, in press; Coogle et al., 2013; Epley et al., 2011). Given the difference in ratings of helpfulness of interventions for families of children with ASD, and the potential effect of perceptions on child and family outcomes, it is critical to continue to research the complex interactions between family needs, perceptions of EI and parent involvement. One potential way to understand the complex experiences of families of children with ASD is through the voices of the families themselves. In giving parents a voice on this complex subject, we can hope to untangle some of the complexities in their experiences with interventions for their children with ASD. Specific research questions are below:

RQ1: How do parents perceive their involvement in EI?
RQ2: How do parents perceive their satisfaction with EI?
RQ3: What are parents’ goals for their children?
RQ4: How do parents describe their transition into and out of EI?
Participants included twenty parents of children with ASD whose children participated in EI within the past 7 years. Twenty initial interviews and 13 follow-up interviews were completed. Initial interview questions related to parents’ experiences and satisfaction with early intervention. Follow-up interviews were used to verify emerging themes as a method of data triangulation. Data was analyzed using Grounded Theory Methods (GTM; Corbin & Strauss, 1998; Glaser & Strauss, 1967). Interviews were coded using open, axial and selective coding.

Based on the interviews, a three-phase model was developed. Participants described their experiences with EI in three distinct stages: prior to EI, during EI, and after EI. Prior to EI, parents expressed a high level of frustration with the referral process into EI. Parental agency was key in gaining access to EI services. During EI, parents described high levels of satisfaction, involvement and collaboration with service providers. After EI, parents described feeling very letdown with services. Specifically, they described having limited access to services in the public school setting, with several parents having to seek private therapy. Parental self-education and the community of parents of children with autism were critical in helping parents gain access to services for their children. These findings highlight a need for additional training for pediatricians and more Child Find programs. Results also indicate a need for parental support programs (e.g., child advocacy programs; Burke, 2013; Wheeler & Marshall, 2008) for parents of children with ASD after aging out of EI and entering the public school setting.

Authors

• Hilary R Bougher-Muckian, West Liberty University
  Presenting Author

• Jessica Troilo, West Virginia University
  Non-Presenting Author

• Amy Root, West Virginia University
  Non-Presenting Author