A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder.
Parents of kids with autism trust local people, not the internet, and that trust gets punished when services vanish with age.
01Research in Context
What this study did
Researchers sent an anonymous survey to 935 North Carolina parents who have a child with autism. They asked where parents go for autism information and whether those sources feel available as the child grows.
What they found
Parents pick local people—teachers, doctors, other parents—over Google or Facebook. As kids get older, parents keep looking, but the doors start closing: fewer services, fewer answers.
How this fits with other research
Van Herwegen et al. (2018) asked the same families and found ASD parents are the least happy with school support. The two studies overlap: local sources are preferred, yet those same sources disappoint.
Leung et al. (2011) showed that when kids can do more daily tasks, parents report fewer unmet needs. N et al. now add the flip side: when kids age and skills lag, information dries up, not just services.
Garwood et al. (2021) interviewed Mongolian parents who also said “no one local knows autism.” The pattern crosses continents: local beats internet, but local is often empty.
Why it matters
Check your families’ contact list. If they rely on you and the school team, make sure you hand them vetted next-step resources before they hit the service cliff at age 10. Build a quick “local plus” packet: one nearby parent group, one trusted website, and your direct email. It takes five minutes and keeps them from drifting to Dr. Google at midnight.
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02At a glance
03Original abstract
For parents of children with an Autism spectrum disorder (ASD), high quality, easily accessible information and a strong peer network can be the key to raising a happy, healthy child, and maintaining family well-being and emotional resilience. This article reports the findings of an anonymous survey examining the information source preferences for 935 parents of individuals with ASDs in North Carolina. Data indicates that parents show similar information seeking patterns across the age spectrum, that availability of information (as indicated by overall information source selection) decrease as children age. It also shows that parents rely heavily on local sources of information, preferring them to nonlocal sources (such as the internet) for many types of information.
Journal of autism and developmental disorders, 2017 · doi:10.1007/s10803-017-3127-z