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PLoS One. 2019 Sep 26;14(9):e0223119. doi: 10.1371/journal.pone.0223119. eCollection 2019.

Association between distress and knowledge among parents of autistic children.

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Department of Psychiatry, McGill University, Montreal, Quebec, Canada.
Department of Neurology and Neurosurgery, McGill University, Montreal, Quebec, Canada.
Autism Spectrum Disorders Research Program, Research-Institute of the McGill University Health Centre, Montreal, Quebec, Canada.
Research Program on Psychotic and Neurodevelopmental Disorders, Douglas Mental Health University Institute, Montreal, Quebec, Canada.
The Centre for Applied Genomics, Hospital for Sick Children, Toronto, Ontario, Canada.
McLaughlin Centre and Department of Molecular Genetics, University of Toronto, Toronto, Ontario, Canada.
Azrieli Centre for Autism Research, Montreal Neurological Institute, Montreal, Quebec, Canada.


Understanding the overall utility of biological testing for autism spectrum disorder (ASD) is essential for the development and integration of biomarkers into routine care. One measure related to the overall utility of biological testing is the knowledge that a person has about the condition he/she suffers from. However, a major gap towards understanding the role of knowledge in overall utility is the absence of studies that have assessed knowledge of autism along with its predictors within a representative sample of families within the context of routine care. The objective of this study was to measure knowledge of ASD among families within the routine care pathway for biological testing in ASD by examining the association between knowledge with potential correlates of knowledge namely sociodemographic factors, parental stress and distress, and time since diagnosis among parents whose child with ASD is undergoing clinical genetic testing. Parents of a child diagnosed with ASD (n = 85, Mage = 39.0, SD = 7.7) participating in an ongoing prospective genomics study completed the ASD Quiz prior to undergoing genetic testing for clinical and research purposes. Parents also completed self-reported measures of stress and distress. Parent stress and distress was each independently correlated with knowledge of ASD, rs ≥ 0.26, ps < 0.05. Stepwise regression analysis revealed a significant model accounting for 7.8% of the variance in knowledge, F (1, 82) = 8.02, p = 0.006. The only factor significantly associated with knowledge was parental distress, β = 0.30, p = 0.006. Parental stress, time since diagnosis, and sociodemographic factors were not significant predictors in this model. We concluded that families require tailored support prior to undergoing genetic testing to address either knowledge gaps or high distress. Ongoing appraisal of the testing process among families of diverse backgrounds is essential in offering optimal care for families undergoing genetic testing.

Conflict of interest statement

The authors have declared that no competing interests exist.

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