Impact of a Genetic Diagnosis for a Child's Autism on Parental Perceptions.

Of 3,197 eligible parents, 1,174 (37%) completed baseline and 847 were analysed, so many eligible parents did not participate. The study tested many survey outcomes and corrected for the fact that many comparisons were made. The sample was mostly White, well-educated, female, and already engaged in autism research, so it may not represent all parents of children with autism. Parents were not randomised to receive a genetic diagnosis, and the GD and NGD groups differed at baseline in child sex, estimated IQ, and perceived impact on daily living. The genetic result was delivered with a written report, clinical guide, and telephone genetic counseling, so the study cannot separate the diagnosis from the counseling. When inheritance was known, most variants were de novo, and parental understanding of recurrence risk changed between one and 12 months, so longer-term effects are unknown. The children were mostly early adolescents and parents had often completed childbearing, so results may not apply to younger children or families still making reproductive decisions. Nearly a decade had passed between the child's autism diagnosis and the genetic diagnosis, which may have tempered reactions. The study reports parents' views, not the views of people with autism.

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Do not conclude that the genetic diagnosis alone changed parental views. The GD group also received a written report, a condition-specific guide, and telephone genetic counseling, and the groups were not randomised. The study cannot separate the diagnosis from counseling or baseline differences.