Qualitative Examination of Factors Influencing Parents' Decision Making Process When Choosing or Rejecting Recommended Services for Their Child Following a Diagnosis of Autism Spectrum Disorder

The drastic increase in the amount of children identified with autism spectrum disorders has become a "public health concern." Parents have increasingly been utilized as key components throughout the assessment and diagnostic process. Parents have also become a vital part of the development of interventions and their implementation in their children's education; and with significant gains. Despite improvements in interventions and service delivery models targeting autism and the abundance of newly diagnosed individuals, services for children with developmental disabilities continue to be difficult for parents and caregivers to access and . A significant portion of parents and caregivers who seek help for their children do not follow through with recommended interventions for a variety of reasons. Closer examination is needed to understand the decision making processes associated with parents' difficulties, inability, or refusal to access services necessary for their children's treatment. Another under-researched factor in the treatment of ASDs that may inhibit or facilitate service utilization involves parents' perception of service characteristics. The purpose of this study is to gain information regarding parents' perceptions of the multiple factors that may affect their decision making process when deciding which recommended services to utilize for their children following a diagnosis of ASD. This study primarily aims to examine reasons why parents may voluntarily choose to decline recommended services for their child. This project represents the first attempt to expand upon a previous model of help-seeking behaviors in order to create a model of help-seeking behaviors that explains the specific and unique experiences of parents of children diagnosed with ASD. The expanded theory proposes that, overall, parents' perceptions of the severity of their children's symptoms proved to have the greatest impact on their ability to access and utilize services for their children following a diagnosis of ASD. Parents' resourcefulness and ability to seek treatments and interventions for their children independently also greatly impacted their ability to access and utilize services. To a lesser extent, "outside influences," such as family, social, and community support also affected parents' ability to access and utilize services. Family, social, and community influence as well as pediatricians' feedback appeared to have the biggest impact on parents' decision making processes when initiating the diagnostic process. Service providers also had an impact at this stage in the diagnostic and treatment process. Many of the parents reported a desire for coordinated services before, during, following their children's diagnosis as they had difficulties "navigating the system." Following their children's diagnosis, many parents had difficulties deciding which services to access first and which service providers accepted their insurance.