Autism may strain family life even before children are diagnosed with the disorder, according to a new study that suggests caregivers and patients alike may benefit from treatment tailored to specific sources of stress in the household.
While many assessments for autism focus on treating the affected child, the current study tested a new questionnaire designed to take a more nuanced snapshot of the numerous ways raising a child with the condition may impact family life.
"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.
The scale Frazier and colleagues developed, the Child and Family Quality of Life questionnaire, delves into factors such as finances, emotional health, support systems, partner relationships and coping strategies.
To test the effectiveness of the questionnaire, the researchers had it completed by parents of 212 children aged seven and under who were referred to a specialist because they might have autism. As it turned out, 121 of the children did have an autism spectrum disorder, while the others did not.
The results showed caregivers of children with autism may experience greater challenges in family life prior to diagnosis than people raising children with other developmental disorders.
When parents reported more pronounced symptoms of autism, they were also more likely to report poorer quality of life for everyone in the family. This is probably because children with more challenging behavior are more disruptive to parental relationships and family life, Frazier said.
Daily living skills, however, appeared tied to quality of life for children with autism but not the rest of the family, Frazier added.
Limitations of the study include its small size, limited age range of the children, and lack of a control group of families raising healthy children, the authors concede in the journal Autism.
But if additional research proves the questionnaire is an effective tool for assessing the impact of autism on family life, it may help clinicians direct parents to interventions that can help alleviate the specific sources of stress within their families, noted Jonathan Weiss, an autism researcher at York University in Toronto who wasn't involved in the study.
While other questionnaires and interviews may measure quality of life in families of children with autism, this one is novel in offering explicit suggestions and recommended clinical interventions based on the specific sources of strain uncovered, Weiss said.
"Supporting parents when you demonstrate emotional and behavioral difficulties is a critical aspect of supporting family quality of life," Weiss said 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."