Michaela Alcazar BSED – Block C

ProfEd I

Research title: Phenomenological Study of the Lived Experiences of Parents of Young Children with
Autism Receiving Special Education Services

Author: Donna Marie Barrow Published: 2017

I. Introduction

This dissertation was a phenomenological study that investigated the lived experiences of
parents with a young child with autism and their experiences with special education early
intervention services (EI). Phenomenological research methodology was used to capture the lived
experiences of the participants and the essence of the phenomenon under investigation (Husserl,
1970). By doing so, the research findings of this study offer insight into parents’ perspectives about
EI for their very young child with autism. This outcome is particularly important because the field of
autism early intervention (AUT-EI) is an emergent area of study and practice (Camarata, 2014;
Zwaigenbaum, 2015) and few qualitative studies have investigated parenting and this context
(Grindle, Kovshoff, Hastings, & Remington, 2009). Very few studies have explored the unique lived
experiences of parents of young children with autism as they navigated the educational service
systems. This study illuminated the lived experiences of parents of children under age 5 with autism.
The results provided insight into the phenomena of parenting and experiences with EI and early
childhood special education (ECSE). The dissertation was conducted using two data collection
methods (a) unstructured interviewing (Vagle, 2014) and (b) photo-elicitation interviewing (Harper,
2002) with four mothers of young children with autism.

II. Methods

The researcher used Phenomenological methodology that is a subset of qualitative research. The
emergent nature of phenomenology between the participants and the researcher sets a context for
deep exploration of the phenomena of parenting a young child with autism and the early education
service system. Husserl’s descriptive phenomenology provided the methodological structure to
bracket the researcher’s own preconceptions and biases during the research process. The study
employed photo elicitation methods and unstructured interviews to gather fine-grained data about
the participants’ lived experiences. The researcher used two methods for data analysis: Mandleco’s
(2013) method for analysis photographic data and Collazzi’s (1978) data analysis method for
descriptive phenomenological research. Throughout the research process the researcher engaged in
research activities that fostered trust between the participant and the researcher, employed
bracketing activities to neutralize biases and preconceptions, and implemented research strategies
consistent with Guba and Lincoln’s (1989) standards for qualitative research validity.

III. Results and Discussions

The researcher’s findings have implications for changes in practice. Most notably essential
themes from this study indicated a need for improved screening practices and service delivery. Given
that early screening protocols and tools are in place, the study’s findings suggested a need for
improvement in provider approaches to working with families with concern for their child’s
development. Secondly, participants’ in this study reported negative experiences with service
systems. There was no coordination, access was difficult, and resources were lacking.
 In sum, the lived experiences of the four participants caring for a very young child with autism
and navigating the early intervention services systems provided insight into the phenomenon. The
essential themes offer insight and may serve as lessons to individuals in professions who support
families in autism early intervention. Consistent with the metaphor Blazing a Trail, the findings of
this research may help other parents navigate early intervention systems as they begin to recognize
emergent manifestations of autism in their children.

The findings of this study highlighted the inextricability of autism, service delivery, and parenting
during the phenomenon of parenting a very young child with autism receiving EI services. Much can
be garnered from the lived experiences of participants and their tireless efforts to find the right
services for their child. Many of these issues described by the participants were consistent with the
research literature but there were also new findings from this study. The phenomenological and
photo elicitation methodologies proved invaluable in exploring the authentic lived experiences of
parents and were consistent with the photo elicitation literature.