Examining the Experiences and Unmet Needs of Chassidic Mothers Raising a Child With Autism

PURPOSE: The purpose of this study was to examine the lived experiences, coping strategies, help-seeking behaviors, priorities, and unmet needs of Chassidic mothers raising a child with autism.

DESIGN: The study used open-ended interviews, using questions based on the work of Schaaf, Toth-Cohen, Johnson, Outten, and Benevides (2011) that were adapted for relevance to the Chassidic community (Shaked & Bilu, 2006). Five mothers were identified from a special education religious school, community service organization, local pediatrician, and nurses working within the Chassidic community. The mothers had at least one child with autism age 8–14 yr. The children were identified as having autism through medical documentation or school placement and appeared to be at the higher functioning end of the spectrum. Mothers provided written consent to participate in the study. The interviews were conducted in the homes, audiotaped, and transcribed verbatim. They were analyzed using NVivo software (QSR International, Doncaster, Victoria, Australia) and constant comparison methodology. Validation of the themes was conducted through member checking with participating mothers.

RESULTS: Five major themes emerged from the analysis: (1) maintaining community norms (maintaining the child in community school, avoiding use of technology, Sabbath and holidays, synagogue attendance and behavior, finding help), (2) coping (religious beliefs, seeking help in and outside community, educating neighbors), (3) stigma (family, siblings, child), (4) resources for child to shine, and (5) gender expectations. While some of the themes, such as coping, stigma, and resources for the child to shine, may be shared experiences among mothers regardless of cultural community, how the themes manifested in the Chassidic community were unique. The themes of maintaining community norms and gender expectations were particularly germane to the Chassidic lifestyle.

DISCUSSION: These five themes have a direct bearing on occupational therapy programs and interventions that may assist the health and well-being of Chassidic mothers and their children with high-functioning autism. The importance of maintaining community norms was challenged due to children’s behaviors, inability of some children to remain in community religious schools, and difficulty participating in Sabbath and synagogue rituals. The use of technology, not endorsed by the community, may cause conflict within the family when used as an intervention for autism. Deviations from the norm created tremendous stigma for mothers and other family members. Boys with autism may experience stigma when they cannot participate in daily synagogue rituals or learn successfully with a learning partner in school.

The mothers expressed a need for children with autism to find enjoyable outlets and opportunities to socialize, identified as important for the child’s self-esteem and life satisfaction. Mothers identified a need to educate community members regarding the behaviors of their child with autism to minimize stigma. Consistent support groups within the community were identified as necessary for parents to express themselves, exchange ideas, and gain needed information in a way that enables them to maintain their privacy and anonymity. Mothers educated teachers in the religious community schools regarding the needs of their students with autism to make adjustments in the child’s learning schedule and the physical environment of the school.

CONCLUSION: An understanding of the routines and rituals that give definition to unique cultural communities is paramount to providing culturally competent occupational therapy to children with autism and designing programs within the community to promote health and wellness.

References

Schaaf, R. C., Toth-Cohen, S., Johnson, S. L., Outten, G., & Benevides, T. W. (2011). The everyday routines of families with autism: Examining the impact of sensory processing difficulties on the family. Autism, 15, 373–389. https://doi.org/10.1177/1362361310386505

Shaked, M., & Bilu, Y. (2006). Grappling with affliction: Autism in the Jewish ultraorthodox community in Israel. Social Science and Medicine, 61, 2190–2200. https://doi.org/10.1007/s11013-006-9006-2