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ABAI Presentation Resources · Tool 01

Grief & Living Loss Quick Guide

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A short guide to noticing context without assuming every family experiences grief.

Presentation companion • Newly written educational practice aid informed by the sources identified below. This is not a validated assessment or a diagnostic instrument. Adapt collaboratively within your training, role, and consented services.

  1. Ask how the caregiver describes their experience. Do not assign a grief stage or treat autism itself as a loss.
  2. Notice transitions: school entry, service changes, adolescence, or discharge may bring new questions.
  3. Ask: “What has this change been like for your family?”
  4. Reflect the caregiver’s language; acknowledge strengths and sources of joy alongside challenges.
  5. Agree on one practical adjustment and revisit whether it helped.

Conceptual sources: (Alimohamadi et al., 2024; Bravo-Benítez et al., 2019; Coughlin & Sethares, 2017; Taylor et al., 2019). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Reflection & next step

What did the caregiver identify as most important?

What will we change, who will do it, and when will we review it?

How will we ask whether the change was helpful?

Material credit: Newly written instructional synthesis prepared for PBHC’s presentation resource hub. The wording, prompts, illustrative dialogue, and worksheet layout are presentation materials, not reproduced author or publisher instruments. The cited authors are credited for the underlying concepts. These tools have not been validated; citation does not imply author endorsement.

References

Alimohamadi, A., Ghasemzadeh, M., Fooladi, F., Abdolmohamadi, K., Killikelly, C., & Janghorbanian, Z. (2024). Living-loss: A narrative synthesis review of the grief process in parents of children with autism spectrum disorder. Journal of Pediatric Nursing, 77, e97–e107. https://doi.org/10.1016/j.pedn.2024.03.036

Bravo-Benítez, J., Pérez-Marfil, M. N., Román-Alegre, B., & Cruz-Quintana, F. (2019). Grief experiences in family caregivers of children with autism spectrum disorder (ASD). International Journal of Environmental Research and Public Health, 16(23), Article 4821. https://doi.org/10.3390/ijerph16234821

Coughlin, M. B., & Sethares, K. A. (2017). Chronic sorrow in parents of children with a chronic illness or disability: An integrative literature review. Journal of Pediatric Nursing, 37, 108–116. https://doi.org/10.1016/j.pedn.2017.06.011

Taylor, B. A., LeBlanc, L. A., & Nosik, M. R. (2019). Compassionate care in behavior analytic treatment: Can outcomes be enhanced by attending to relationships with caregivers? Behavior Analysis in Practice, 12(3), 654–666. https://doi.org/10.1007/s40617-018-00289-3

Additional reading

Related background selected from the presentation reference list; these publications do not validate this worksheet.

Gordon, J. (2009). An evidence-based approach for supporting parents experiencing chronic sorrow. Pediatric Nursing, 35(2), 115–119. https://pubmed.ncbi.nlm.nih.gov/19472675/

Didiana (Didi) De La Osa, BCBA-D · ABAI presentation resource page