Understanding the experience of parents planning for the future care of adult children with autism

This study explores the process of planning concerning parents and the future care and support of adult children with autism spectrum disorder (ASD). Eighteen parents between the ages of 50 and 74 completed genograms and in-depth interviews addressing their experience planning for their own and their children's future. Grounded theory analyses suggest that the process of planning is a perpetual cyclical process involving eight factors, including: ASD diagnosis, planning response, triggering event(s), planning (re)enacted, plans made, and situation changes. The level of satisfaction or confidence that parents have in the planning process is influenced by the last two factors: history in planning and reliability of support. Navigating losses represents the core concept because the data suggest that accumulating loss and the emotions associated with those losses have both a motivating and discouraging effect on the parents planning and is key to understanding the planning process.

Name thesis:degree_name

Ph. D.

Level thesis:degree_level

Doctoral

Discipline thesis:degree_discipline

Human Development and Family Science (MU)

Grantor dc:publisher

University of Missouri--Columbia

Year dc:date.issued

2023

Author dc:creator

• Stott, Kevin L.

Advisor dc:contributor.advisor

• Benson, Jacquelyn J.

Language dc:language.iso

eng, English

DOI

https://doi.org/10.32469/10355/97073

OAI identifier oai:identifier

oai:mospace.umsystem.edu:10355/97073