Factors Affecting Family Compliance with Genetic Testing of Children Diagnosed with Autism Spectrum Disorder

J Autism Dev Disord. 2021 Apr;51(4):1201-1209. doi: 10.1007/s10803-020-04589-y.

Abstract

There is broad consensus about the importance of post-diagnostic genetic testing for children with ASD. However, the extent of compliance with these tests and the factors affecting compliance have rarely been examined. We surveyed a sample of 114 families with a child with ASD in Israel, where such genetic testing is funded by the government. We found that only one-third of these families completed post-diagnosis genetic testing for their child. The main factor influencing compliance was the doctor's recommendation (OR 11.6; 95% CI 3.2-42.4; p < 0.001). Furthermore, > 50% of the non-compliant families reported that genetic testing was irrelevant to them. Our findings highlight the importance of providing clear recommendations and explanations regarding the benefits and relevance of post-diagnosis genetic testing for children with ASD.

Keywords: Autism spectrum disorder; Compliance; Genetic testing.

MeSH terms

  • Attitude
  • Autism Spectrum Disorder / diagnosis*
  • Autism Spectrum Disorder / genetics
  • Child
  • Child, Preschool
  • Family / psychology*
  • Female
  • Genetic Counseling / psychology
  • Genetic Testing / statistics & numerical data*
  • Humans
  • Israel
  • Male
  • Surveys and Questionnaires
  • Treatment Adherence and Compliance*