Impact of a Multidisciplinary Parent Education Program on Families of Children Recently Diagnosed with An ASD

Background: Research indicates that parents of children with ASDs 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). 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 developed an education program for parents/caregivers of children newly diagnosed with autism. Training modules for the program were selected from topics recognized by the CDC, NIH, and ASA as important for parents and families.

Objectives: Given the importance of families in the development, education, and behavioral support of children with this disability, it is imperative that programs aimed at increasing parent knowledge, decreasing parenting stress, and improving family quality of life be available in a format that is both efficient and effective.

Methods: Families were recruited to participate in this project through the network of programs associated with the Center for Autism and Related Disabilities located in Albany, NY. To participate in this project, each child was required to meet the following criteria: have a primary diagnosis of an ASD; have received the diagnosis within 12 months; be between the ages of 12 months and 5 years of age; reside in one of the 9 counties comprising the Capital Region of NYS. Data is available on 14 parents whose children met the above criteria and completed the program. Evaluation of the parent education program was conducted using reliable and valid tools. Each of the measures was completed by parents prior to and following participation in the education program. In addition, to assess overall parent satisfaction with the education program (social validity), a parent satisfaction survey was administered following completion of the program.

Results: Preliminary data suggest that following the education program, parents were reporting less stress overall. Data also indicate that parents reported improvements in quality of life following the program, and also had greater knowledge of autism. Parents reported being highly satisfied with the program.

Conclusions: Data from evaluation of the parent education program indicate that families of children recently diagnosed with autism are greatly benefitting from participation. Overall, parents are highly satisfied with the program and following completion they are more knowledgeable about autism and report lower levels of stress and improved quality of life.  A significant gap in services exists for this population, as little support is available for parents following a diagnosis of autism in their child. By developing an education program designed specifically for parents of newly identified children, we are providing an essential service that does not presently exist.