Peer-reviewed article
"Listening to the word autism changes everything": the impact of an Autism Spectrum disorder diagnosis on families.
Gallego-Jiménez MG, Torrecilla-Manresa S, García-Bravo C ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study explores how Spanish parents experience the process of getting an autism diagnosis for their child and how it affects family life. Parents reported a long diagnostic journey marked by uncertainty and mixed emotions including shock, sadness and relief. Families adapted by using peer support, restructuring routines and adjusting expectations, though this required ongoing effort. The diagnosis affected the whole family, including siblings, and parents worried about their child's future independence and access to support.
Key points
- The diagnostic process was prolonged and characterized by uncertainty and limited professional validation of parental concerns
- Parents experienced an ambivalent emotional response including shock, sadness and relief, with grief and adjustment occurring as non-linear and recurrent processes
- Coping strategies included peer support, active service-seeking, structuring routines and flexible adjustment of goals, though these required sustained vigilance and effort
- The diagnosis intensified the parent-child bond, affected siblings and substantially reorganized family life
- Central ongoing concerns included future autonomy of the child, continuity of care and availability of adult support
Limitations
This is a small qualitative study with 17 Spanish parents that captures lived experiences but cannot be generalized to other populations or settings. The study does not provide quantitative data on outcomes or compare experiences across different support systems.
Abstract
Introduction An autism spectrum disorder (ASD) diagnosis is a transformative event for families that extends beyond clinical identification and affects the emotional, social and organizational dimensions of everyday life. This descriptive exploratory qualitative study aimed to explore the lived experiences and expectations of Spanish parents during their child's ASD diagnostic process, as well as the impact of the diagnosis on family life and concerns about the future. Methods Seventeen parents of children diagnosed with ASD participated in online semi-structured interviews. Participants received information about the study procedures, interview recording, confidentiality and data handling before providing written informed consent. Interviews were audio-recorded, transcribed verbatim and analyzed using inductive qualitative content analysis. Each interview was initially examined as a distinct experiential account situated within its family and social context before shared and divergent patterns were compared across participants. Results Three overarching themes were identified: (1) the impact of diagnosis and the process of family adaptation; (2) the emotional impact, coping strategies and reorganization of family life; and (3) concerns about the future. Parents described a prolonged diagnostic process characterized by uncertainty, limited professional validation of their initial concerns and an ambivalent emotional response involving shock, sadness and relief. Grief and adjustment were experienced as non-linear and recurrent processes associated with the reformulation of previously imagined expectations. Parents described coping through peer support, the active search for services and personal assistance, the structuring and anticipation of everyday routines and the flexible adjustment of goals to their child's abilities. Although these strategies helped parents manage everyday demands, they also required sustained vigilance and considerable effort. The diagnosis additionally intensified the parent-child bond, affected siblings and substantially reorganized family life. Concerns about future autonomy, continuity of care and the availability of adult support remained central. Discussion These findings highlight the need for clear post-diagnostic guidance, sustained emotional support and coordinated, family-centered services across the life course.