Acceptance or Despair? Maternal Adjustment to Having a Child Diagnosed with Autism

Abstract

Psychological adjustment to having one’s child diagnosed with an autism spectrum disorder has important implications for a parent’s mental health. In a longitudinal study, we examined the association between maternal adjustment to the diagnosis and measures of distress and well-being in 90 mothers of children with autism (baseline and 18 months). We used a novel 30-item scale “Adjustment to the Diagnosis of Autism.” Factor analysis identified three dimensions of adjustment: acceptance, self-blame, and despair. Acceptance appeared to be a protective response, as it was associated with lower depressive symptoms, cross-sectionally and over time. Conversely, caregivers with increasing levels of self-blame and despair about the diagnosis over 18 months had worsening of mental health and satisfaction with life during this period.

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Acknowledgments

We gratefully acknowledge the time of caregivers and families who participated in this study. We also thank Alexandra Crosswell, Julie Vaccaro, Stefanie Mayer, Rachel Radin, and Carlos Almeida for their constructive and insightful comments on this manuscript. This study was supported by the National Institute on Aging, award numbers R01 AG030424 and R24AG048024, and the Althea Foundation, San Francisco.

Funding

This study was supported by the National Institute on Aging, award numbers R01 AG030424 and R24AG048024, the Goldman Fund, and the Althea Foundation.

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Authors

Contributions

ND conceived of the current hypotheses, performed the relevant statistical analyses, and drafted the manuscript. BS developed the novel scale and assisted with drafting the manuscript. MC participated in the design of the study and assisted with statistical analyses and interpretation of the data. EE conceived of the larger prospective study on chronic caregiving stress and cellular aging (SAGE) from which the data was extracted, coordinated its design and data collection, and helped to draft the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Nikko S. Da Paz.

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Ethical Approval

All procedures performed in this study were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. All participants provided written, informed consent using IRB approved procedures.

Conflict of interest

All authors declare that there is no conflict of interest.

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Da Paz, N.S., Siegel, B., Coccia, M.A. et al. Acceptance or Despair? Maternal Adjustment to Having a Child Diagnosed with Autism. J Autism Dev Disord 48, 1971–1981 (2018). https://doi.org/10.1007/s10803-017-3450-4

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Keywords

  • Autism spectrum disorders
  • Caregivers
  • Stress
  • Adaptive adjustment
  • Depression