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Parental Perspectives on Early Life Screening and Genetic Testing for ASD: A Systematic Review
Katerina Dounavi1, Meral Koldas2,3
1School of Social Sciences, Education & Social Work, Queen's University of Belfast, 20 College Green, Belfast, BT7 1LN, Northern Ireland, United Kingdom. k.dounavi@qub.ac.uk.
Journal of Autism and Developmental Disorders
|February 14, 2024
Summary
Parents desire more knowledge about Autism Spectrum Disorder (ASD) genetic testing and favor early screening and interventions. Understanding parental preferences is crucial as genetic tests improve ASD diagnosis.
Area of Science:
- Neurodevelopmental Disorders
- Genetics
- Public Health
Background:
- Autism Spectrum Disorder (ASD) lacks prenatal or early life screening tests.
- Early recognition of ASD is vital for timely behavioral intervention during peak brain plasticity.
- Parental perspectives on early screening and genetic testing for ASD are not well-documented.
Purpose of the Study:
- To systematically review existing literature on parental perspectives regarding early life screening for ASD.
- To specifically examine parental views on genetic testing for ASD.
- To identify gaps in understanding parental needs and preferences for ASD screening.
Main Methods:
- Systematic literature review of 30 studies.
- Coded studies based on parental and child characteristics, research design, data collection/analysis, screening type, and parental perspectives.
- Synthesized findings on parental attitudes towards early ASD screening and genetic testing.
Main Results:
- Caregivers require enhanced knowledge regarding ASD genetic testing.
- Parents generally support early life screening for ASD.
- Parents prefer early access to ASD genetic testing and behavioral interventions.
Conclusions:
- Parental preferences must be integrated into research and practice as genetic testing for ASD advances.
- Healthcare providers play a key role in informing parents about ASD genetic testing and screening options.
- Future research should prioritize capturing diverse parental views on early ASD detection and genetic testing.
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