Evaluation of a Multidisciplinary Parent Education Program on Families of Children Newly Diagnosed with Autism

Background: Research indicates that parents of children with autism spectrum disorders experience greater levels of stress than parents of typically developing children and even parents of children with other disabilities and chronic illness (Hassall et al., 2005; Tomanik et al., 2004). In addition, parents of children with pervasive developmental disorders have been found to report a lower quality of life compared to parents of typically developing children (Mungo et al., 2007). Recent studies suggest that providing parents of young children with autism information about the diagnosis and effective treatment practices through parent education programs and support groups can decrease parenting stress (Keen et al., 2009; Tonge et al., 2006) and improve overall quality of life (Shu & Lung, 2005). The Center for Autism and Related Disabilities at the University at Albany, in collaboration with CapitalCare Developmental Behavioral Pediatrics, developed an education program for parents of children newly diagnosed with autism. Training modules for the program were selected from topics recognized by the CDC, NIH, and Autism Speaks, as well as other leading organizations, as important for parents and families.

Objectives: Given the importance of families in the development, education, and behavioral support of children with autism, the purpose of this project is to increase parent knowledge, decrease parenting stress, and improve family quality of life in a timely manner using a format that is both efficient and effective.

Methods: Evaluation of the parent education program was conducted using reliable and valid tools. To assess level of parental stress, the Parenting Stress Index-Short Form (PSI-SF; Abidin, 1995) was given to parents. The Family Quality of Life Scale (FQOL; Summer et al., 2005) was used to gauge family life, and a test of general knowledge of autism was also administered. Each of these measures was completed by parents prior to and following participation in the education program. Additionally, a parent satisfaction survey was administered following completion of the program.

Results: Findings from 48 parents that have completed the project indicate that families of children recently diagnosed with autism are greatly benefitting from participation. Following the program, parents reported less overall stress. Specifically, parent stress scores on the PSI were in the elevated range prior to treatment but fell within normal limits following intervention. Parents also reported an improvement in quality of life following the program. Data showed positive changes on all subscales of the FQOL, with greatest change in the category of “emotional well-being” followed by “parenting” and “family interaction.” Results also indicate that overall parents are highly satisfied with the program and following completion are more knowledgeable about autism.

Conclusions: Results of this project underscore the important role that working in partnership with parents play in improving outcomes. Making available to parents an education program that provides information on steps to take following a diagnosis of autism reduces likelihood that families will need to wait long periods of time before learning about and accessing resources for their child, leading to improved functioning for both child and family.