Parental Experiences with Early Identification and Initial Care for their Child with Autism: Tailored Improvement Strategies

J Autism Dev Disord. 2022 Aug;52(8):3473-3485. doi: 10.1007/s10803-021-05226-y. Epub 2021 Sep 1.

Abstract

Whereas it is well documented how parents experience the diagnostic process of their child with autism spectrum disorder (ASD), less is known about parental experiences with the course of the early identification process and first steps in receiving care for their child with ASD symptoms. This mixed-method study investigated these experiences as well as barriers and improvement strategies regarding early detection in the Netherlands. A parental survey (N = 45) showed that, on average, initial concerns started at 22 months. A focus group (N = 10) revealed multiple barriers and proposed strategies of improvement in three domains: "Knowledge and Expertise", "Attention to Parental Needs" and "System and Organization". Strategies to improve early identification will be discussed based on parental perspectives and professional perspectives.

Keywords: Autism spectrum disorder; Early detection; Improvement strategies; Parental experiences; Preventive care.

MeSH terms

  • Autism Spectrum Disorder* / diagnosis
  • Autism Spectrum Disorder* / therapy
  • Autistic Disorder* / diagnosis
  • Autistic Disorder* / therapy
  • Child
  • Early Diagnosis
  • Humans
  • Parents
  • Risk Assessment