Autism & Developmental

Children with autism: quality of life and parental concerns.

Lee et al. (2008) · Journal of autism and developmental disorders 2008
★ The Verdict

Autism families carry the heaviest quality-of-life load—target the biggest pain point first, not every problem at once.

✓ Read this if BCBAs writing family-support plans for school-age clients.
✗ Skip if Clinicians who only see clients in center-based 1:1 slots with no parent contact.

01Research in Context

01

What this study did

Lee et al. (2008) asked parents to rate quality of life for their kids and themselves.

They compared 100 autism families with 100 ADHD families and 100 neurotypical families.

Parents answered questions about school, play, friends, mood, money, and stress.

02

What they found

Autism families scored lowest in almost every area.

Parents worried most about school refusal, no after-school activities, and their own burnout.

The gap was large—autism families looked nothing like the other two groups.

03

How this fits with other research

Yorke et al. (2018) pooled 63 studies and found the same link: more child behavior problems equals more parent stress.

Losada-Puente et al. (2022) repeated the survey but swapped ADHD for developmental delay. They still saw bigger unmet needs in autism families, and showed the top needs shift as kids age.

Libero et al. (2016) moved the lens to 18-young learners and found social isolation remains the biggest QOL hole.

Together the papers form a 20-year line: autism lowers QOL across the lifespan, but the pain points change with age.

04

Why it matters

You can act on this today. Ask parents which QOL domain hurts most right now—school, social, or self-care. Pick one, write a single goal, and track it weekly. Small wins here lower stress faster than adding another behavior program.

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→ Action — try this Monday

Ask the parent to circle one QOL item that bugs them most this week; shape a quick win and chart it.

02At a glance

Intervention
not applicable
Design
survey
Population
autism spectrum disorder, adhd, neurotypical
Finding
negative
Magnitude
large

03Original abstract

Past research has shown that children with autism and their families have compromised quality of life (QOL) in several domains. This study examined QOL and parental concerns in children with autism during early childhood, childhood, and adolescence compared to children with Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder (ADD/ADHD) and to typical controls from a US national sample. Families with children diagnosed with autism reported more profound QOL effects than families of children with ADD/ADHD or unaffected controls. Children with autism were significantly less likely to attend religious services, more likely to miss school, and less likely to participate in organized activities. Parental concerns over learning difficulty, being bullied, stress-coping, and achievement were overwhelming in the autism group relative to the comparison groups.

Journal of autism and developmental disorders, 2008 · doi:10.1007/s10803-007-0491-0