Maternal experience raising girls with autism spectrum disorder: a qualitative study.
N Navot, A G Jorgenson, S J Webb
PMID 28464352WHAT IT FOUND
Mothers of verbally fluent girls with autism described delayed diagnosis, disbelief from others, and few resources about girls.
They also described adolescence bringing social, puberty, and safety worries, and a changed mother-daughter bond.
Key findings
01Most mothers encountered pediatric skepticism and late diagnosis: 9 of 11 girls were diagnosed after age 6, and four after age 10.
02Others doubted the diagnosis because autism was seen as a boy's condition and because a daughter was cute and chatty.
03As daughters entered adolescence, mothers described harder school and social demands and worries about future independence.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was small and homogeneous. It included only Caucasian, non-Hispanic mothers with some college or more, and families already interested in research. The study interviewed mothers once. It cannot show how experiences change over time. It did not include fathers. It also focused on maternal reports, not direct daughter outcomes.
The easy way to misread this
Do not conclude that these themes show a treatment works or apply to all families. The study interviewed 11 highly educated Caucasian mothers once, so it describes their experience, not a pattern that can be generalized.