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Autism spectrum: parents' perspectives reflecting the different needs of different families

Nadja K Battanta1, Oskar G Jenni1,2,3, Christina Schaefer1

  • 1Child Development Center, University Children's Hospital Zurich, Zurich, Switzerland.

BMC Pediatrics
|July 9, 2024
PubMed

Insights

Parents of children with autism spectrum disorder need more support. Many face challenges with diagnosis, daily life, and finances, highlighting the need for better care systems.

Area of Science:

  • Pediatric Health
  • Neurodevelopmental Disorders
  • Family Support Systems

Background:

  • Autism spectrum disorder (ASD) presents significant caregiving challenges for parents.
  • Tailored early support is vital for the well-being of children with ASD and their families.
  • Current support systems' adequacy in meeting parental needs for ASD care remains unclear.

Purpose of the Study:

  • To explore parental perceptions of care, support, and therapy systems for children with ASD.
  • To identify specific challenges and unmet needs faced by parents of children with ASD.

Main Methods:

  • Online survey distributed to 57 parents of children with ASD in Switzerland.
  • Semi-structured interviews conducted with 20 of the survey participants.
  • Qualitative and quantitative data analysis to understand parental experiences.

Main Results:

  • A lengthy and difficult diagnostic process was a major challenge for two-thirds of parents.
  • 60% of parents desired closer post-diagnosis follow-up and increased support.
  • Only one-third of parents felt they managed daily life well; many reported exhaustion, feeling challenged, and financial difficulties.

Conclusions:

  • Primary pediatricians should initiate diagnostics and assess family needs beyond the diagnosis.
  • Proactive guidance to support services, including financial counseling, is crucial for all parents.
  • Leveraging families' positive experiences with their neurodivergent children can enhance quality of life.
Abstract

Keywords:
Autism spectrum disorderCare gapsChallengesFinancial counsellingParental stressParents needs

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