“What Should We Do Now?”: Family Service Use and Decision-Making in Autism

Abstract

Autism is a developmental disability affecting multiple areas of functioning and carries significant caregiver, family, and financial loads. These two studies aim to examine family-identified intervention decision-making factors as well as service use and unmet needs of autistic individuals who are minimally verbal. The first study is a systematic review the research of parent and caregiver identified decision-making factors used when determining interventions for their autistic child. The second study uses a sequential explanatory mixed method design, leveraging quantitative data from a survey of minimally verbal (MV) autism families to inform the qualitative interview data collection. This mixed method study investigates the decision-making process of families of individuals who are minimally verbal when choosing services, potential areas of unmet need, and barriers and/or facilitators to access those services. Results from Study 1 identified 32 studies that were reviewed, with five main decision-making factors across studies. These included child-relate factors, parent perceptions, supporting evidence, logistic factors, and sources of information. Results from Study 2 suggested that MV autism families are accessing a variety of services across different sectors. While they are accessing these services, there are also areas of high unmet need with this population. Qualitative results also identified five main themes of decision-making factors: child-related factors, parent-perceptions, information gathering, service-related factors, and logistic factors.