Stigma and Social Perception of Mothers of Children with Autism Spectrum Disorder

Background:

Mothers of children with autism spectrum disorder (ASD) report higher levels of parental stress related to community responses to their children’s behavior and their parenting strategies. These experiences may contribute to high levels of anxiety and depression that have been reported in mothers of children with ASD. Stigmatized individuals “possess a quality that others perceive as negative, unfavorable, or in some way unacceptable” (Shtayermman, 2009). Goffman (1963) first used the expression “courtesy stigma” to describe the distinctive burden of association with a stigmatized individual. Mothers of children with ASD, in the role of primary caregivers, are especially vulnerable to stigmatizing behavior in their community (Nealy, 2012). Characterizing mothers’ experience of stigma is critical, as experiences of prejudice, rejection, and discrimination increase the risk for psychopathologies such as anxiety and depression (Farrugia, 2009).

Objectives:

We aimed to understand mothers’ experiences of stigmatization associated with raising one or more children with ASD. Using a qualitative approach, we examined two different types of courtesy stigma: (1) Felt Stigma (feelings of shame or rejection) and (2) Enacted Stigma (overt acts of discrimination) triggered by mothers’ peer groups, families, or strangers. We also examined whether mothers developed coping mechanisms to counteract these acts of stigma.

Methods:

We conducted in-depth, semi-structured interviews (lasting 27-83 min) with 20 mothers with at least one child with ASD (age range: 3-10 years). Mothers were asked about experiences related to raising children with ASD, including quality of the relationship between their children and shifts in family dynamics after receiving an ASD diagnosis. Interviews were transcribed and double coded for accuracy, and a codebook consisting of 60 codes was established using a thematic analysis approach (Braun & Clark, 2006). We focused on the following three sub-themes: (1) Mother’s Feelings of Shame (2) Invisibility of ASD and (3) Misconceptions of ASD, to identify instances of enacted and felt stigma.

Results:

All 20 participants reported personal accounts of distinct challenges related to parenting a child with ASD. Effects of felt stigma were reported by 80% of mothers. The fact that ASD is not overtly recognizable made it harder for parents to connect with friends and family, and in some cases, led to the destruction of relationships. Cases of enacted stigma, endorsed by 30% of mothers, were experienced through categorization by use of labels and negative judgment regarding parental decisions. One mother reported excommunication from her church congregation due to her child being disruptive during services. Generally, effects of courtesy stigma are negative. Still, mothers developed coping styles that allowed them to view stigmatizing reactions of others as acts of ignorance, rather than malice.

Conclusions:

Courtesy stigma is conveyed in public reactions to mothers’ parenting choices and has damaging effects on social relationships and well-being. Mothers’ coping strategies are self-protective and they also safeguard the family unit by defending against critical judgments about the child and the family. Further exploration of courtesy stigma will consider if severity of a child’s symptomatology is related to the degree of stigma that a family experiences.