4.5 Article

Understanding How Parents Make Meaning of Their Child's Behaviors During Screening for Autism Spectrum Disorders: A Longitudinal Qualitative Investigation

Journal

JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS
Volume 51, Issue 3, Pages 906-921

Publisher

SPRINGER/PLENUM PUBLISHERS
DOI: 10.1007/s10803-020-04502-7

Keywords

Autism spectrum disorders; Screening; Qualitative; Parental perception

Funding

  1. Health Resources Services Administration (HRSA) [R40MC26195]
  2. National Institute of Mental Health [R01MH104400]
  3. New Jersey Alliance for Clinical Translational Science
  4. National Center for Advancing Translational Sciences (NCATS), a component of the National Institute of Health (NIH) [UL1TR0030117]
  5. NIH [R40MC26195]
  6. HRSA [R40MC26195]

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This study found that during the screening process to determine if a child has ASD, parents need to go through processes of heightened sensitivity, differentiation from other developmental conditions, and using the ASD diagnosis to explain concerning behaviors. Identifying these interpretive processes during ASD screening opens up new opportunities for shared decision-making.
A family's journey in understanding their child's behaviors in relation to Autism Spectrum Disorders (ASD) frequently begins with screening. This study aimed to characterize the interpretive processes that unfold for parents. We employed longitudinal interviews with 19 families engaged in a community-based multi-stage screening protocol. Parents participated in 1-6 interviews dependent upon children's length of engagement in the screening protocol; data were analyzed through modified grounded theory. Parents who moved towards understanding their child's behaviors as ASD expressed (1) sensitization to ASD symptoms, (2) differentiation from other developmental conditions, and (3) use of the ASD diagnosis to explain the etiology of concerning behaviors. Identifying interpretive processes involved during ASD screening provides new opportunities for shared decision-making.

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