Date of Award

2013

Degree Type

Dissertation

Degree Name

Doctor of Philosophy in Education

Department

Education

First Advisor

Joanne Eichinger

Abstract

Autism Spectrum Disorders (ASD) impacts 1 in 50 children in the United States (Centers for Disease Control and Prevention [CDC], 2013). This striking increase in the number of children with ASD affects families in a variety of ways.

The purpose of this study was to develop and validate a scale that measured the experiences of families of children with ASD in schools, health care settings, and in their families/communities. Family-centered care (American Academy of Pediatrics, 2003) principles were used to create the items in the scale. In addition to determining the psychometric properties of the scale, the second purpose of this study was to assess families’ experiences with professionals in the health care, education, and community/familial settings with respect to the child’s race/ethnicity, family household income, level of educational attainment of caregiver, race/ethnicity of doctor who diagnosed the child with ASD, and kind of doctor that diagnosed the child with ASD.

Four hundred sixty-six respondents completed the online scale and personal background questions over a period of four months. Principal components analysis was conducted on the “Family Experiences with Autism Spectrum Disorders” (FEASD) Scale, which indicated 3 factors were present. The three factors, “Family Support,” “School Quality,” and “Health Care Quality,” account for 48.58% of the variance and had an overall coefficient alpha level of .92. Each factor was found to have coefficient alpha levels of .96, .89 and .70, all acceptable internal consistency values for a new scale (Stevens, 2002).

The multivariate analyses indicated two significant differences. First, families of children with ASD who reported a household income of $100,000 - $124,999 had more positive experiences on the “Family Support” Scale, F(9, 456) = 2.97, p = .002. Second, families who reported that a pediatrician diagnosed their child with ASD had more positive experiences on the “Total FEASD” Scale F(3, 410) = 4.36, p = .005, compared to those families who had a psychologist make the diagnosis. Limitations of the present study and future directions of research are included.

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