A percepção de mães de crianças com transtorno do espectro autista a respeito de seu desempenho no papel materno

Abstract

Introduction: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by impairments in social interaction and communication. The arrival of a child with ASD may alter family dynamics and daily routines. Mothers are often the family members most affected in their everyday lives, experiencing overload, stress, work withdrawal, and neglect of self-care. Motherhood represents a specific occupational role, shaped by socially expected behaviors and influenced by cultural and contextual factors. Occupations refer to actions and activities with purpose and meaning, and the ability to perform them is defined as occupational performance. This study aims to understand the perceptions of mothers of children with ASD regarding their occupational performance in the maternal role, as well as to explore the meanings attributed to motherhood and identify the repercussions of ASD on this performance. Method: This qualitative, exploratory, and descriptive study was conducted in a private clinic in Joinville, Santa Catarina, Brazil. Eight mothers over 18 years old participated, each having an only child diagnosed with ASD for more than one year, aged between 4 and 5 years, and classified as support level 1 or 2. Data collection was carried out through semi-structured interviews and the Canadian Occupational Performance Measure (COPM). Interviews were conducted individually, audio-recorded, transcribed, and analyzed using the Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires (Iramuteq) software through thematic analysis. COPM data underwent simple descriptive analysis. Results: Participants were between 29 and 41 years old; seven were married and one was in a stable relationship; six had a household income between five and fifteen minimum wages; six had completed higher education and two had incomplete higher education; all participants lived with their spouse and child. Interview data generated five categories: “need for moments of self-care”; “self-perception and life changes”; “understanding motherhood”; “mental overload”; and “atypical motherhood and Autism Spectrum Disorder”. COPM results indicated that the main difficulties perceived by mothers were related to self-care, productivity, and leisure activities, including bathing, household tasks, physical exercise, and going out with friends and spouse. Discussion: Category 1 revealed reduced occupational performance in leisure and social participation activities. Category 2 highlighted transformations experienced by participants in their lives and family roles. Category 3 showed that motherhood was often perceived as involving the renunciation of personal needs in order to meet the child’s demands. Category 4 demonstrated that maternal demands generate feelings of pressure, exhaustion, and stress. Category 5 indicated that receiving an ASD diagnosis affects how women perceive and experience motherhood, leading to routines organized around autism-related demands. Final Considerations: This study demonstrated that motherhood is experienced as a process in which women frequently give up personal aspirations, desires, and needs for the benefit of their child, a reality that may become even more pronounced when raising a child with ASD. Participants reported changes in their activities and routines after becoming mothers.