The creator did not give me more than I can handle: Exploring coping in parents of Black autistic children

Abstract

There is a paucity of studies that center on the lived experiences of Black families raising autistic children, and major gaps remain in our understanding of how parents of Black autistic children cope with stressors. Drawing from the Black family stress and coping model, this mixed-methods study explored coping strategies utilized by parents of Black autistic children. Twenty-two parents completed the Ways of Coping Questionnaire and participated in semi-structured interviews. Using grounded theory methods, we conducted data collection and analyses simultaneously until we did not identify new themes. Our quantitative and qualitative results were generally aligned. We found that parents used an array of coping strategies, at times combining different methods, to address complex stressors. Parents also expressed the need for more social support from providers, as well as a desire for inclusive spaces where they could engage with other parents whom they felt could better relate to the stressors they encountered. Study findings also suggest that kinship support, church involvement, and collective socialization are key protective factors in Black communities. Therefore, understanding the role culture plays in the use and effectiveness of coping strategies is essential to improving healthcare and other systems of care. Lay abstract Parents of Black autistic children use several strategies to cope with daily stressors. These strategies include seeking social support, self-care, and optimism. We asked parents about their experiences receiving treatment services for their autistic child and how they reduce parenting stress. Twenty-two parents completed a coping survey and participated in individual interviews. Few studies have explored the experiences of Black families raising autistic children, and it’s important for healthcare and other systems of care to understand the role culture, race, and ethnicity play in the use of coping strategies. In our study, the majority of parents relied on social support to relieve stress and identified partners, family, and community members, as their most useful sources of support. Connecting with other parents of autistic children, through support groups and social media, also helped parents relieve stress. Parents discussed using self-care activities (e.g. church, exercising, listening to music) to cope with stressors. Several parents described how prayer and meditation helped them reframe stressful situations and gain more patience and appreciation for “what’s important.” The findings of this work demonstrate the need for professionals to have ongoing and deeper conversations about the ways in which parents deal with stressors. In particular, clinicians should leverage the strengths of Black families and promote strategies that are culturally informed and engaged.

“Know Your Children, Who They Are, Their Weakness, and Their Strongest Point”: A Qualitative Study on Diné Parent Experiences Accessing Autism Services for Their Children

“…In one instance, for example, a parent reported resorting to legal assistance to obtain autism treatment services for their child. The disparities in diagnosis of children with autism are consistent with what has been reported in the literature [ 8 , 36 , 37 , 38 , 39 , 40 ]. Aylward et al reported that culturally and linguistically diverse and low-income children often do not receive autism-specific services during important developmental windows (e.g., ages 0–3 years) leading to racial, ethnic, and socioeconomic disparities in access to diagnosis, intervention, and other services for children with autism [ 38 ].…”

“…Sociocultural factors reported in prior research on autism in other culturally and linguistically diverse populations [ 16 , 36 , 37 , 38 , 39 , 40 ] were reflected in the parents’ narratives from this study. These included parents’ concerns about possible stigmatization by their family members and the broader community related to the child’s autism, lack of awareness about developmental disabilities, and limited understanding of autism symptoms and treatment services [ 38 ].…”

Parents taking action adapted to parents of Black autistic children: Pilot results

“…Studies have found that some parents flourish in their caregiving role, such as engaging in positive social experiences in the autism community, gaining patience, and appreciating their children's success (Kim & Dababnah, 2020; Markoulakis et al, 2012). Additionally, while research has found that advocacy skills can help parents cope with stress (Ewles et al, 2014), another study found that Black parents of autistic children temper their advocacy efforts due to fears of appearing aggressive (Lewis et al, in press). In total, the literature suggests the need for multifaceted, culturally relevant intervention approaches which address both child and parent outcomes and acknowledge family strengths along with challenges.…”

Pilot Trial of a Peer-to-Peer Psychoeducational Intervention for Parents of Black Children Awaiting a Developmental Evaluation

“…23,24 Although the findings from these community-based studies were overall promising, we were limited in our ability to reach families awaiting clarification on their children's potential autism diagnosis. Given the evidence that Black children (regardless of family socioeconomic status 16 ) are at risk for diagnostic delays, 15,27 that Black families have unique stressors and strengths, 17,35 and that parents can experience distress while their children are waitlisted for developmental concerns, 26 the current study extended our previous research to Black children awaiting a developmental or autism evaluation. Specifically, we piloted a 12-session version of PTA for parents of Black children with suspected autism or other developmental delays and analyzed short-term changes in parent (stress and depression); family (needs/strengths, advocacy, learning support, social support, and community access); and child (social competence and problem behavior) outcomes.…”

“…2 Research has found that Black parents of autistic children use a range of coping strategies, including optimism and reliance on social networks and faith communities, which require culturally responsive intervention approaches. 17 Although a handful of studies have specifically focused on the unique needs of Black Americans, 18 further research is needed to understand how to build on existing strengths and address barriers facing Black children and their families.…”