Evaluation of an information resource for parents of children with autism spectrum disorder.
A short, upbeat booklet handed out at ASD diagnosis wins quick parent praise and fills the information gap earlier studies flagged.
01Research in Context
What this study did
The team made a short booklet called "Autism Spectrum Disorder: Information for Parents."
They asked parents and providers to read it and share what they thought.
The study used interviews and focus groups to hear honest reactions.
What they found
Parents said the booklet felt hopeful and easy to read.
Providers agreed it filled a gap families hit right after diagnosis.
Overall, both groups rated the resource as helpful and welcome.
How this fits with other research
Two years earlier, Porter et al. (2008) ran parent focus groups in England. Those parents asked for "simple, hopeful information sheets" at the moment of diagnosis. The 2010 booklet is the direct answer to that request.
Mansell et al. (2004) had already shown that parents leave diagnosis meetings feeling lost. The new booklet supplies the missing piece those surveys pointed to.
Dai et al. (2021) moved the idea online. Their 14-module parent-training program kept the same goal—give parents clear, doable knowledge—but added interactive lessons and saw similar high praise.
Why it matters
You can copy the booklet model today. Keep it to a few pages, use plain words, and add local phone numbers and websites. Hand it to families the minute you say "autism," then ask what else they need. This tiny step raises parent trust without adding clinic time.
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02At a glance
03Original abstract
This study sought to evaluate a newly created information resource book for parents of children newly diagnosed with Autism Spectrum Disorder entitled Autism Spectrum Disorder: Information for Parents. A purposive sample of 13 participants (comprised of mothers of children with ASD and ASD service providers) participated in 1 of 3 focus groups. Focus group participants provided their feedback regarding the accessibility, usefulness, content accuracy and tone of the resource book. Findings reveal that concise yet comprehensive and hopeful information targeted to parents at diagnosis, has been lacking in ASD practice. This supportive informational resource book addresses this gap in supporting family adaptation and mobilization at the key juncture of diagnosis. Suggestions for resource refinement and future development of similar diagnostic-related literature to support families of newly-diagnosed children are outlined.
Autism : the international journal of research and practice, 2010 · doi:10.1177/1362361309342570