From 'Parent' to 'Expert': How Parents of Children with Autism Spectrum Disorder Make Decisions About Which Intervention Approaches to Access.
Parents evolve from novices to informed decision-makers; meet them where they are and share data early.
01Research in Context
What this study did
Boxum et al. (2018) interviewed parents of children with autism. They asked how moms and dads pick treatments over time.
The team mapped a learning path parents follow. They found seven things that steer each choice.
What they found
Parents do not stay clueless. They shift from 'newbie' to 'savvy shopper' as they try services.
Practitioners who lecture or gate-keep slow the path. Guides who share data speed it up.
How this fits with other research
Guillon et al. (2022) surveyed 1,000-plus European parents. Clear guidance and short waits made them happy. That survey turns the 'expertise path' into a system target: cut wait times, offer a coach.
Wieckowski et al. (2022) drew a tiered plan: pediatricians handle clear ASD cases, specialists keep complex ones. Their plan gives parents an early, trusted answer—exactly the on-ramp G et al. say parents need.
Phaneuf et al. (2011) tested a three-step parent class: read, meet, get personal feedback. Each step matched a stage on the expertise climb, showing one way to run the ladder instead of just describing it.
Why it matters
Treat the parent as a learner, not a blank slate. Start sessions by asking what they already tried and what they want to learn next. Hand over brief data sheets, not jargon. When you give choices, name the pros and cons out loud. This respects their climb up the expertise trail and builds teamwork fast.
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02At a glance
03Original abstract
Parents of children with Autism Spectrum Disorder are responsible for deciding which interventions to implement with their child. There is limited research examining parental decision-making with regards to intervention approaches. A constructivist grounded theory methodology was implemented in this study. Semi-structured interviews were undertaken with 14 participants from 12 family units. Data collection and analysis occurred concurrently, allowing a grounded theory to be constructed. Parental decision-making was influenced by many factors, arranged into seven core categories (values, experience, information, motivation, understanding, needs and logistics). Decision-making evolved over time, as parents transformed from 'parent' to 'expert'. The results of this study provide an insight into parental decision-making, which has implications for the support provided to parents by health professionals.
Journal of autism and developmental disorders, 2018 · doi:10.1007/s10803-018-3473-5