Inside Outside: Jewish American Mothers of Children with Autism Spectrum Disorder (ASD) and Affliate Stigma

Background:

Affiliate stigma is the self-stigmatization process of family members, or affiliates, of a stigmatized or disenfranchised person. Family members of children with Autism Spectrum Disorder (ASD) are known to experience affiliate stigma. Perceptions of atypical behavior and development may be influenced by the lens of cultural norms. Although previous research had been conducted on how parents of children with ASD experience affiliate stigma within many specific cultural contexts, the specific aims of this study were to explore the experiences of Jewish American parents of children with ASD and to determine if and how they experience affiliate stigma.

Methods

Through a qualitative, phenomenological study, data were gathered through semi structured interviews and analyzed using thematic analysis (TA), as described by Braun and Clarke, with coding facilitated by ATLAS.ti software. The sample consisted of 16 mothers of children with ASD who identify as Jewish American. Interviews lasted 30–60 minutes and the researcher asked questions about the participants’ families, experiences in their Jewish community, and experiences with affiliate stigma.

Results

All participants (n = 16) were mothers who responded that their child with ASD was disconnected from the Jewish community. Themes for the participants centered around concepts of belonging, emotions connected to their identity as a mother of a child with ASD, a need for friendship, affiliate stigma as a barrier to belonging, and meaning and personal growth.

Conclusions/Implications:

The findings of the study contribute greatly to all areas of social work practice by informing social work professionals about the nuanced experiences of mothers of children with autism within an emphasis on cultural context. The study findings add to scholarship by delving into the unique cultural perspectives and lived experiences of this population. Furthermore, the study findings can be used to inform future qualitative research in other cultural contexts and broader quantitative research.