A Phenomenological Study of the Lived Experiences of Parents of Young Children with Autism Receiving Special Education Service

Over the past two decades reported rates of autism have steadily risen. The current incidence is 1 in 68 children. While autism can be reliably diagnosed at 18 months in most children with the condition, specialized autism treatment rarely begins before a child's third or fourth birthday. As screening and diagnosis procedures improve so does the need for effective early interventions for autism. Researchers and professionals have expressed a growing concern over the need for effective early interventions for infants and toddlers with autism. At the same time, there is a dearth of qualitative research exploring the needs and experiences of parents with a very young child with autism. Employing a phenomenological framework, the purpose of this study was to investigate the lived experiences of parents of a young child with autism receiving early special education services. Unstructured interviews and photo elicitation were used to generate rich, detailed descriptions of the phenomenon. Data analysis from photographic images and narrative dialogues illuminated six essential themes across participants: (a) parents as pioneers: forging the way for future families; (b) making the journey as a family; (c) navigating uncharted service systems; (d) overcoming challenges and obstacles; (e) resilience, ingenuity and hope; and (f) reflecting on the first three years and looking forward. Participants expressed that they felt this study gave them a "voice" in the research literature. This study is one of the first to investigate the lived experiences of parents as they seek and secure autism services for their child under five with autism.