Services Received and Parental Perception of Quality of Life for Children with Autism Spectrum Disorder

With the rapid increase in the rate of children diagnosed with Autism Spectrum Disorder (ASD), there has been a surge in treatment interventions and outcome measures. Treatment interventions consist of evidence-based practices and programs that lack scientific validation. Parents’ selection of a treatment or multiple treatments is often based on the desire to maximize their child’s personal well-being (Pituch et al., 2011; Rodger, Braithwaite, & Keen, 2004). Current outcome measures provide valuable information and may demonstrate a change in a standard score. For example, a change in intelligence quotient, is not evidence that this change contributes to the child’s personal well-being or quality of life (QOL). Measures of QOL assesses aspects of health, happiness, self-esteem, mental health, and life satisfaction (Cummins, McCabe, Romeo, & Gullone, 1994). For decades these measures have been used as a means of identifying treatment objectives and improving outcomes for individuals with disability and adults with autism. However, such measures have not been used for selecting treatment or assessing the effect of treatment for young children with ASD. The purpose of this study was to investigate how parents of children with ASD rate their child’s quality of life and determine how specific interventions relate to parental perception of QOL for children with ASD. This study resulted in the development of a QOL scale, which includes indicators specific to characteristics of children with ASD. The scale demonstrated evidence of validity for each subscale as well as for the total instrument. The data show that the majority of parents (81.9%) perceived their child as having a good or excellent QOL. Parents selected and used between 0 and 9 types of treatment for their child with ASD during the past twelve months. The results of an analysis of variance showed that there was not a significant interaction effect on total number of treatments utilized and parental perception of their child’s QO