Experiences of family members of children diagnosed with autism spectrum disorder

Experiencias de familiares de niños diagnosticados con trastorno del espectro autista

ABSTRACT

Objective:

To describe, in the mothers’ perception, the experiences lived by families in the care of children with autism spectrum disorder.

Method:

Qualitative study, carried out with 20 mothers of children diagnosed with autistic disorder accompanied by an institution in Teresina-Piauí, Brazil. Semi-structured interviews were conducted between February and March 2019 and subjected to content analysis.

Results:

Five central ideas related to the stages experienced by family members after the diagnosis were identified, ranging from denial to acceptance. Family members and caregivers experience feelings of sadness and mourning for the discovery of the impossibility of curing the syndrome, revealing the need for care for this family. The search for help and adaptations of the routine are constant experiences.

Conclusion:

Caring for children who live with autistic disorder involves learning ranging from structural to emotional aspects, such as dealing with limitations and impossibility of cure, pointing out to the need for family care.

Keywords:
Autistic disorder; Mental health; Family health