Parents’ Perceptions of Autism Spectrum Disorder Etiology and Recurrence Risk and Effects of their Perceptions on Family Planning: Recommendations for Genetic Counselors
Abstract
Knowledge about the etiology of Autism Spectrum Disorders (ASDs) is increasing, but causes remain elusive for most cases. Genetic counselors are positioned to help families that have children with ASDs despite uncertainty regarding etiology. To determine how genetic counselors might best provide services, an anonymous survey was conducted with 255 parents whose children were diagnosed on the autism spectrum. Questions concerned: 1) their perceptions of ASD cause(s) and 2) recurrence risk, 3) whether perceived risk affected family planning decisions, 4) whether parents had received genetic services, and 5) how genetic counselors might assist families. The most prevalent perceived cause was genetic influences (72.6%). Most parents’ recurrence risk perceptions were inaccurately high and significantly affected family planning. Only 10% had seen a genetic professional related to an ASD. Parents provided several suggestions for genetic counselor best practices. Findings indicate the importance of genetic counselor awareness of parent perceptions in order to best help families who have children with ASDs.
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The concordance rate for siblings of individuals with autism of unknown cause ranges from 5 to 10% and approaches 35% in families with two or more affected children.
“The concordance rate for siblings of individuals with autism of unknown cause ranges from 5 to 10% and approaches 35% in families with two or more affected children (22–25).”
From Gene × Environment Interactions in Autism Spectrum Disorders: Role of Epigenetic Mechanisms (2014) · cites this paper as [24]
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- Authors
- Selkirk, C. G., McCarthy Veach, P., Lian, F., Schimmenti, L., & LeRoy, B. S.
- Affiliations
- Endeavor Health (US)
- Department of Educational Psychology University of Minnesota Minneapolis MN USA
- University of Minnesota (US)
- Corresponding author
- Selkirk, Christina G.
- Venue
- Journal of Genetic Counseling
- Publisher
- Wiley
- Published
- 2009-06-02
- Volume
- 18
- Issue
- 5
- Pages
- 507-519
- ISSN
- 1059-7700 (ISSN-L)
- 1573-3599
- OpenAlex
- W2093976142
- Cited by
- 118
- References
- 57
- Citations by year
- 2025: 2 · 2024: 3 · 2023: 3 · 2022: 20 · 2021: 6 · 2020: 10 · 2019: 5 · 2018: 11 · 2017: 10 · 2016: 6 · 2015: 10 · 2014: 8 · 2013: 7 · 2012: 6
- FWCI
- 2.74
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Genetic Counseling (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Prenatal Screening and Diagnostics
- Keywords
- autism spectrum disorder, parental attitudes, etiology, recurrence risk, family planning, genetic counseling, genetic counselors, genetic services, risk perception
- MeSH terms
- Workforce, Adult, Autistic Disorder, Family Planning Services, Female, Genetic Counseling, Humans, Male, Middle Aged, Parents, Recurrence
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