“No one could calm him down”: Mothers’ experience of autism diagnosis and obtainment of resources in an urban public school district.

Abstract

The purpose of this study was to explore the experience of accessing autism diagnosis and resources in a Midwest urban public school district for diverse mothers of children with autism spectrum disorder. Method: We employed thematic analysis using narrative inquiry methodology to analyze the data from 9 mothers (n ϭ 5 African American, n ϭ 2 Hispanic, and n ϭ 2 White) who participated in a focus group. Results: Three themes were identified by the researchers: (a) late medical diagnosis (subthemes: problems that parents didn't perceive as signs of autism spectrum disorder, making comparisons to other siblings or children), (b) negative communication experiences (subthemes: husband and wife, parent and educational professionals), and (c) coping strategies (subthemes: resources, prayer). Discussion: The mothers' narratives indicated a strong need for advocacy and parent-school partnership. Public Significance StatementThis qualitative study of diverse mothers in a Midwest USA urban public school district reports the personal experiences of late autism diagnosis, unsettling communication experiences, and limited use of resources. Implicit bias on the part of providers and school personnel may account for the perceived poor communication, lack of collaboration and advocacy.

Family members' experience of well‐being as racial/ethnic minorities raising a child with a neurodevelopmental disorder: A qualitative meta‐synthesis

“…In addition, as resilient advocates from a racial/ethnic minority background, caregivers had to learn how to access services and address barriers to their child's medical/behavioral care in the face of racial/ethnic discrimination, language barriers, and financial constraints (Araujo et al, 2017; Blanche et al, 2015; Johnson et al, 2020; Lobar, 2014; Lovelace et al, 2018; Luong et al, 2009; Perry et al, 2005). It is important to note, however, that while parents emphasized the importance of being treated as members of their child's healthcare team, their desired involvement did not always look the same.…”

“…This urgency resulted in some mothers initially giving up their own jobs and deprioritizing personal goals to focus on their children's daily and therapeutic care (Lobar, 2014; Luong et al, 2009). For some families, these changes resulted in exhaustion—particularly in the mother, who often bore the additional brunt resulting from changes in routine and responsibilities (Blanche et al, 2015; Johnson et al, 2020; Lovelace et al, 2018; Luong et al, 2009). This exhaustion was resolved in several ways including adopting a more realistic schedule, establishing routines, and accepting more respite and community care (Blanche et al, 2015; Lovelace et al, 2018; Luong et al, 2009).…”

“…Becoming an advocate, however, was a skill that needed to be continually developed. Parents described an evolutionary process where they went from (1) very limited, or no, amount of knowledge about their child's condition; (2) having the knowledge but not yet being able to advocate for their child; to (3) being able to utilize their knowledge with their child's healthcare and educational teams to get necessary services and accommodations best fitted for their child and family (Blanche et al, 2015; Johnson et al, 2020; Lobar, 2014; Lovelace et al, 2018; Luong et al, 2009; Perry et al, 2005). One example of this was in the selection of therapeutic interventions.…”

“…However, whether this reliance was beneficial depended greatly on the teacher and school system, with many parents stating that teachers and school staff needed to receive more education about neurodevelopmental disorders to be a reliable source of support. In addition, learning to navigate the school system was often a difficult, and ongoing, process (Johnson et al, 2020; Perry et al, 2005).…”

“…In addition, for many of these families, there was a patriarchal system in place that often resulted in the mother being responsible for both the care of the child and ensuring smooth day‐to‐day functioning of the household. Some mothers expressed exhaustion, and occasionally resentment, toward their spouse who, many mentioned, offered insufficient aid (Araujo et al, 2017; Blanche et al, 2015; Johnson et al, 2020; Luong et al, 2009) as expressed by a mother of a child with ASD:

We're gonna eat. She's [child] gonna have a meltdown; she's gonna throw stuff everywhere.

…”