Impact of Receiving Genetic Diagnoses on Parents' Perceptions of Their Children with Autism and Intellectual Disability.
Robert Klitzman, Ekaterina Bezborodko, Wendy K Chung and 1 others
PMID 38158539WHAT IT FOUND
Parents reported that a genetic diagnosis for their child with autism and intellectual disability led them to blame the child less for behavioral difficulties and to increase patience.
This shift in perception also helped some extended family members and teachers understand the child's needs more fully.
Key findings
01A genetic diagnosis helped parents better understand their child's behavior, leading to less blame and more patience.
02The diagnosis helped older relatives and teachers appreciate the child's difficulties more, potentially lowering unrealistic expectations and increasing empathy.
03While reducing blame, the diagnosis could also diminish parents' hopes for the child's future, fostering sadness.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study included only 28 parents, all of whom had received a positive genetic diagnosis. It did not include parents whose children were tested but did not receive a diagnosis, so it cannot determine if reactions differ between these groups. The sample was predominantly White (75%) and from the US, limiting generalizability to other racial, ethnic, or cultural contexts. The study relies on self-reported perceptions and does not measure actual changes in child outcomes or service utilization. The children were mostly teenagers (mean age 13.6 years), so findings may not apply to younger children or adults.
Declared interests
The study was approved by the Columbia University Department of Psychiatry/New York State Psychiatric Institute Institutional Review Board. No specific funding sources or author conflicts of interest are detailed in the provided text, though participants were compensated with gift cards.
The easy way to misread this
Do not assume that a genetic diagnosis universally improves outcomes or reduces stress. While it may decrease blame, it can also lead to diminished hope and sadness for parents. Furthermore, the study did not show that the diagnosis actually resulted in increased services or insurance coverage, only that parents hoped it would.