Michelle Garcia, PsyD and Associates - "Improving Quality of Life"

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Parental Expectations on the Adult Lives of Children with Autism Spectrum Disorders, Intellectual Disabilities, and Multiple Disabilities

Kenneth Poon, Lynette Koh, and Iliana Magiati (2013) conducted a study in which they examined the influence of parental expectations on the adult lives of children with Autism Spectrum Disorders, intellectual Disabilities, and Multiple Disabilities. The researchers’ conception of parental expectations was two-fold, consisting of the parents’ beliefs about the importance of certain adult life outcomes and the parents’ beliefs about the possibility of those adult life outcomes. To conduct their study, the researchers recruited the parents of one hundred-five children (6-18 years old) diagnosed with Autism Spectrum Disorder, Intellectual Disabilities, or Multiple Disabilities. The children and their respective parents were recruited from a special school in Singapore, Thailand. The researchers sent each child’s parent(s) a survey packet, containing a demographic information questionnaire, the Parent ratings of importance and likelihood of outcomes (PRILO) survey, and the Autism Treatment Evaluation Checklist (ATEC). The PRILO survey, adapted from a similar survey used by Ivey (2004), was used to measure the parents’ expectations of their child’s adult life outcomes. The ATEC, designed specifically for children with Autism Spectrum Disorders, was used to assess the overall functioning level of all of the child participants in the study. From an analysis of the collected data, the researchers discovered that the adult outcomes that parents found most important were “be safe from harm” and “be happy and satisfied.” The outcomes parents rated as most likely were “be happy and satisfied” and “attending school.”  The least important adult outcomes were “have their own children” and “getting married.” The researchers found that age, gender, diagnosis, and overall functioning were not reliable predictors of parental ratings of importance. However, they also discovered that overall functioning level was a reliable predictor of parental ratings of likelihood. Finally, the researchers found that parental ratings of importance were significantly greater than parental ratings of likelihood.

The data concerning the specific outcomes valued and the specific outcomes deemed likely was not surprising; similar results have been published in previous research. Nonetheless, the research previously discussed is important. It suggests that parents may want certain adult life outcomes for their developmentally disabled children, but they temper these hopes and expectations in response to their child’s overall level of functioning. This readjustment of expectations could be viewed as practical and efficient, a more effective outlook for obtaining the most basic and necessary outcomes for children with developmental disabilities. However, it could also be viewed as the parents’ decreasing expectations for their child’s adult lives. The next question that must be addressed is if this decrease in expectations is detrimental to the developmentally disabled individual’s overall quality of life. Unfortunately, only additional research can address this question. However, there is no question that parents of developmentally disabled children have a significant influence on the progress and outcome of their children’s lives. Krauss, Seltzer, & Jacobson (2005) reported that individuals with developmental disabilities continue to live with their families well beyond the age observed amongst typically developing children. Families often play a crucial role in facilitating the developmentally disabled individual’s access to resources, services and opportunities (Sitlington, Clark, & Kolstoe, 2000). Considering the significance of parents’ roles and their expectations for their developmentally disabled children, if lowered parental expectations are deemed a detriment to an individual’s overall quality of life, psycho-education would be integral. It would be a shame for disabled individuals to experience a lower quality of life because the individuals they rely on most are not informed enough to not only support them but to help them be truly happy.