Family quality of life and autism spectrum disorder: Comparative diagnosis of needs and impact on family life.
Autism families feel bigger unmet needs than other delay families, and the needs move with the child’s age.
01Research in Context
What this study did
Losada-Puente et al. (2022) asked 312 parents to rate how important and how satisfied they felt about 25 family-life areas.
Half of the families had a child with autism. The other half had a child with a different developmental delay.
Kids ranged from babies to 11 years old. The team compared the gap between “this matters” and “we have this” for each group.
What they found
Families with autism scored bigger gaps in every area. The largest holes were emotional support, respite, and professional help.
Age changed the picture. Preschool families cried out for daily routines and sleep. School-age families worried more about school help and social life.
How this fits with other research
Lee et al. (2008) also saw lower quality of life in autism families, but they lumped all ages together. Luisa shows the pain points shift as kids grow.
McCauley et al. (2018) found that kids with autism plus intellectual disability had the worst social and physical well-being. Luisa widens the lens: even autism without ID still leaves families hungrier for support than other delays.
Libero et al. (2016) looked at transition-age youth and saw the same social-connection gap. Luisa proves the crack starts before kindergarten and widens if we wait.
Why it matters
You can tailor treatment goals to the family’s age zone. For under-fives, build bedtime and mealtime plans first. For six-to-elevens, add peer skills and school advocacy. Ask caregivers to rank “importance vs satisfaction” each quarter. Their top three gaps become your parent-training targets.
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Join Free →Hand the parent a 3-column sheet: important – somewhat – not important. Ask them to circle the top three life areas that feel far from “important.” Start parent training there.
02At a glance
03Original abstract
BACKGROUND: Families of children with autism spectrum disorders (ASD) face ongoing challenges that can affect their family life. Helping those families cope with the impact of ASD and promote more positive family and child outcomes requires research to better understand the differential aspects of quality of life for those families. AIM: This article examined the quality of life of 77 families (n = 45 families with children with ASD aged 0-12 years old, and n = 32 families with other developmental disabilities). METHODS AND PROCEDURE: The Family Quality of Life Scale (FQOL) was applied. OUTCOMES AND RESULTS: The relationships between importance and satisfaction were analyzed, contrasting differences between families, and studying the influence of age. Results show the presence of common needs, as the higher ratings in importance versus satisfaction evidenced, but also specific and more evident needs in families of children with ASD, motivated by the differential characteristics of the disorder and their environment. Age was relevant to focus support on priority areas. CONCLUSION: The need to adapt to family individualities to promote their quality of life was concluded. IMPLICATIONS: Those findings reinforce the importance of bringing together theoretical knowledge and evaluation of professional practice as a framework for converting the latter into good practices and quality actions.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2022.104211