Graduation Year

2013

Document Type

Dissertation

Degree

Ph.D.

Degree Granting Department

Psychological and Social Foundations

Major Professor

Linda Raffaele Mendez

Keywords

caregiver, cross cultural, experience, families, qualitative

Abstract

Autism Spectrum Disorders (ASDs), also referred to as Pervasive Developmental Disorders (PDDs), are characterized by deficits in verbal and nonverbal communication, social interaction, and repetitive or restricted interests and behaviors. To date, much of the literature on ASDs has been conducted from a western perspective, although interest in ASDs from a global perspective has dramatically increased in recent years. Over the last decade, there have been numerous conceptual papers attempting to explain how autism might be experienced in other parts of the world. However, in actuality, little research has been conducted in this area, and further exploration of the experiences of individuals diagnosed with ASDs and the families raising them across the globe is needed. The nature of qualitative methodology makes it best-suited for capturing the nuances and complexity of the psychological phenomenon underlying the experiences being studied. These experiences help to capture and reflect the ways in which culture impacts these experiences.

The purpose of this study was to examine the lived experiences of mothers raising children diagnosed with an ASD in Jamaica using a qualitative, exploratory methodological approach. Jamaica is in its infancy in terms of creating a standardized diagnostic process for ASDs and is early in development of government programs designed to provide services to newly diagnosed children on the spectrum. Many children diagnosed with ASDs living in Jamaica have very limited access to educational settings, and an abundance of barriers to treatment exist. As such, there is much to be gained from studying mothers' experiences with their child's early development and their initial concerns for their child's development, their experiences with the diagnostic process, the perceived impact of raising a child on the spectrum for themselves and their family, their daily living experiences, their experiences accessing supports and services, their vision for the future, as well as any advice they would give to mothers of children who were recently diagnosed. To this end, the experiences of 13 mothers raising a child diagnosed with an ASD and living in Jamaica were captured through open-ended interviews in this study.

The results of this study found a number of notable themes to emerge from interviews with mothers raising a child on the spectrum and living in Jamaica. In particular, a number of mothers reported a typical pregnancy, with a slightly higher Cesarean-section rate than would be expected, and fairly typical early development noted in the child. Mothers reported first noticing a number of different developmental concerns, most especially language delays, lack of eye contact, and unusual social interactions, although a number of mothers were not the first to notice these issues. All but one mother reported first seeking out the counsel of their child's pediatrician, many to have their concerns dismissed, with all but one mother going on for evaluation at a clinic specializing in ASD assessment where their child was later diagnosed. Most mothers reported a number of stressors, in particular difficulties finding respite care, appropriate educational settings for their child, as well as coping with the tremendous financial burden they had in raising their child. They reported their lives to be busy, especially because they were dealing with their child's challenging behaviors on a daily basis. The mothers' vision of the future for their child varied greatly including hope for independence, for them to learn a skill, for better communication, or that they be able to live a "normal" life. The mothers all varied greatly as far as the advice mothers would give to mothers of children recently diagnosed on the spectrum, with some saying to have hope or keep their faith and others noting the importance of being the advocate and "structuring" the child early.

This study not only provides a better understanding of the experiences of mothers raising a child on the spectrum in Jamaica but also provides empirical support for their advocacy efforts and the need for increased supports and services for these families. It also serves to inform a number of ecological, systemic factors impacting families raising a child on the spectrum in Jamaica and a framework for other studies who seek to also understand the various types of experiences that families of children on the spectrum have.

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