"Set in Stone" or "Ray of Hope": Parents' Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD.
A clear gene finding helps parents accept autism as lifelong while sparking wish for future treatments.
01Research in Context
What this study did
The team talked with 25 parents who had just received chromosomal microarray (CMA) results for their child with autism.
They asked how the news changed the parents’ ideas about why the child has autism and what the future may hold.
Each parent interview lasted about one hour and was recorded word-for-word so themes could be pulled out.
What they found
Most parents blended the new genetic finding with their old beliefs instead of replacing them.
Hearing "a gene change caused this" made the diagnosis feel permanent, yet it also lit hope for future medicines that might fix that exact gene.
Parents used two images: "set in stone" for today and "ray of hope" for tomorrow.
How this fits with other research
Reiff et al. (2015) warned clinicians to stress uncertainty when giving CMA results; the 2017 study shows parents still grab onto the hope part anyway.
Lemons et al. (2015) found a rough diagnosis talk hurts later family talks; here, parents who felt the news was delivered kindly wove it into hope, not despair.
Milshtein et al. (2010) counted a large share of autism parents as "resolved" with the label alone; adding a gene reason seems to push more toward acceptance plus new optimism.
Why it matters
When you share CMA findings, expect parents to walk out both relieved and hungry for future cures. Build time to talk about next concrete steps—therapy goals, advocacy skills—so the hope turns into action this month, not someday.
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02At a glance
03Original abstract
Despite increasing utilization of chromosomal microarray analysis (CMA) for autism spectrum disorders (ASD), limited information exists about how results influence parents' beliefs about etiology and prognosis. We conducted in-depth interviews and surveys with 57 parents of children with ASD who received CMA results categorized as pathogenic, negative or variant of uncertain significance. Parents tended to incorporate their child's CMA results within their existing beliefs about the etiology of ASD, regardless of CMA result. However, parents' expectations for the future tended to differ depending on results; those who received genetic confirmation for their children's ASD expressed a sense of concreteness, acceptance and permanence of the condition. Some parents expressed hope for future biomedical treatments as a result of genetic research.
Journal of autism and developmental disorders, 2017 · doi:10.1007/s10803-017-3067-7