In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.
At Autism, Leslie A. Markowitz and colleagues have an article titled "Development and Psychometric Evaluation of a Psychosocial Quality-Of-Life Questionnaire for Individuals With Autism and Related Developmental Disorders." The abstract:
This study investigated the psychometric properties of the Child and Family Quality of Life scale, a measure of psychosocial quality of life in those with autism and related developmental disorders. Parents of 212 children suspected of autism spectrum disorder completed the Child and Family Quality of Life prior to a diagnostic evaluation. Results indicated that the Child and Family Quality of Life measured six unique quality-of-life constructs (child, family/caregiver, financial, external support, partner relationship, and coping), had good reliability across score ranges and exhibited expected patterns of convergent validity. Caregivers of autism spectrum disorder–affected children reported reduced family quality of life prior to the time of diagnosis relative to caregivers of children with other developmental disabilities. The Child and Family Quality of Life is a brief, reliable measure for assessing psychosocial quality of life in families affected by developmental disability. This study is the first to demonstrate impairments in family quality of life early in the developmental course of autism spectrum disorder, prior to formal diagnosis. In addition to traditional child-focused intervention strategies, families with autism spectrum disorder–affected children require early, broad intervention strategies that positively impact the whole family.At Reuters, Lisa Rapaport reports on the study:
"We have known for many years that families affected by autism spectrum disorder or related neurodevelopmental disorders are at risk for decreased quality of life as well as family and relationship stresses," said senior study author Dr. Thomas Frazier, an autism researcher at Cleveland Clinic in Ohio.
"The purpose of developing the scale was to give clinicians an instrument that they could use to go beyond assessing symptoms in the child and look more broadly at the whole family unit and support network," Frazier added by email.
Catching issues early may also help to minimize strain on families, noted Norah Johnson, a researcher at Marquette University and Children's Hospital of Wisconsin.
"The stress of autism relates to finances, personal and family life stressors, and managing behavior and communication with the child and caregiving stress," Johnson, who wasn't involved in the study, said by email. "Children with autism spectrum disorder often do not sleep well, act out in public and have comorbid conditions that tire parents out."