Evidence map›Paper›PMID 41105305›Full record

ArticleJournal of autism and developmental disorders2025

Genetic Counseling Utilization and Experience Among Caregivers of Children With ASD in the United States.

Shixi Zhao, Ming Li, Wei-Ju Chen, Brandon J Rennie, Yu-Yu Hsiao, Yue Guan, Mia Del Rosario

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Article in Journal of autism and developmental disorders, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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4 · The record

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5 · Who and what money

Authors and funding

7 authors.

Shixi ZhaoCollege of Population Health, University of New Mexico, 2300 Tucker Ave NE, Albuquerque, NM, 87131, USA. shixizhao@salud.unm.edu.ORCID http://orcid.org/0000-0002-7758-0918
Ming LiDepartment of Health Sciences, Towson University, Towson, MD, USA.
Wei-Ju ChenDepartment of Psychology, The University of Texas Permian Basin, Odessa, TX, USA.
Brandon J RennieDepartment of Pediatrics, University of New Mexico, Albuquerque, NM, USA.
Yu-Yu HsiaoDepartment of Individual, Family, & Community Education, University of New Mexico, Albuquerque, NM, USA.
Yue GuanDepartment of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, Atlanta, Georgia.
Mia Del RosarioDepartment of Spanish and Portuguese, University of New Mexico, Albuquerque, NM, USA.

Funding

Research Allocations Committee at the University of New Mexico Research Allocations Committee at the University of New Mexico
6 · The paper itself

Abstract

purposeThe present study examined caregivers' utilization of and experience with genetic counseling services for their children diagnosed with autism spectrum disorder (ASD).

methodsWe surveyed 1063 caregivers from the Simons Foundation Powering Autism Research for Knowledge (SPARK). A logistic regression analysis was conducted in SPSS 29.0 to examine the factors associated with caregivers' utilization of genetic counseling for ASD. Caregivers' self-reported experience with the counseling services they received were analyzed using NVivo 14.0.

resultsOnly 7.4% of the caregivers reported having received the genetic counseling services from genetic counselors, and most of the caregivers had limited awareness of genetic counseling services and knowledge of genetic testing. Caregivers' utilization of genetic counseling services was associated with several factors, including whether they had pursued genetic testing, the caregivers' awareness of genetic counseling services, their knowledge of genetic testing, and the presence of co-occurring intellectual disabilities.

conclusionThese findings underscore the critical role of improving awareness and access to genetic counseling services for families of children with ASD. Additionally, there is a critical need to support caregivers with clear, accessible information about genetic services for ASD. Healthcare providers - particularly pediatricians, developmental specialists, and genetic professionals are encouraged to take a more proactive role in initiating conversations with families about genetic counseling and testing, helping families make informed decisions. Enhancing communication and support around genetic services can better prepare caregivers to navigate the complexities of genetic testing.

Indexed as

Autism spectrum disordersCaregiversExperienceGenetic counselingUtilization

Identifiers

PMID41105305

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