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 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.
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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."
SOURCE: http://bit.ly/1OB1w1C Autism, online December 10, 2015.
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