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

Strategic Insights -

A new study conducted by researchers at the University of New Mexico has shed light on the utilization and experience of genetic counseling services for caregivers of children diagnosed with autism spectrum disorder (ASD). The survey of 1063 caregivers found that only 7.4% reported receiving genetic counseling services, highlighting the need for improved awareness and access to these services. The study emphasizes the importance of healthcare providers initiating conversations with families about genetic counseling and testing to prepare them for the complexities of genetic testing.

Key Takeaways:

  • A logistic regression analysis conducted by the researchers found that caregivers' utilization of genetic counseling services was associated with several factors, including whether they had pursued genetic testing, awareness of genetic counseling services, knowledge of genetic testing, and the presence of co-occurring intellectual disabilities.
  • The study highlights the limited awareness of genetic counseling services and knowledge of genetic testing among caregivers of children with ASD, with only 7.4% reporting having received the counseling services from genetic counselors.
  • The research underscores the critical role of improving awareness and access to genetic counseling services for families of children with ASD, emphasizing the need to support caregivers with clear, accessible information about genetic services.
  • Healthcare providers are encouraged to take a more proactive role in initiating conversations with families about genetic counseling and testing, helping families make informed decisions.
  • The study suggests that enhancing communication and support around genetic services can better prepare caregivers to navigate the complexities of genetic testing.

Statistics:

  • 1063 caregivers were surveyed in the study.
  • Only 7.4% of caregivers reported having received genetic counseling services from genetic counselors.
  • 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.

Sources:

  • Genetic Counseling Utilization and Experience Among Caregivers of Children With ASD in the United States. Journal of Autism and Developmental Disorders, 2025.
  • University of New Mexico, College of Population Health, University of New Mexico, 2300 Tucker Ave NE, Albuquerque, NM, 87131, United States.
  • Springer|plenum Publishers, 233 Spring St, New York, NY 10013, USA.