Mothers’ Adjustment to Autism: Exploring the Roles of Autism Knowledge and Culture

Gordillo, Monica; Chu, Andrea; Long, Kristin A.

doi:10.1093/jpepsy/jsaa044

Cited by 20 publications

(14 citation statements)

References 17 publications

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“… 27 Simple parent-focused ASD education programs that do not take into account cultural factors (e.g., community acceptance) may be inefficient and leave disparities intact. 18 Diagnostic delays and misdiagnosis can have significant downstream effects on the care journey pathway. Racial and ethnic minorities with ASD have been found to have decreased access to treatment services because of language and logistic barriers (e.g., transportation, childcare, and job accommodations), as well as a lack of knowledge of existing services.…”

Section: Individual Family and Cultural-level Factorsmentioning

confidence: 99%

Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder

Aylward

Gal‐Szabo

Taraman

2021

J Dev Behav Pediatr

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Section: Individual Family and Cultural-level Factorsmentioning

confidence: 99%

Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder

Aylward

Gal‐Szabo

Taraman

2021

J Dev Behav Pediatr

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“…Across studies, another challenge for caregivers was lack of knowledge about ASD (Gordillo et al, 2020; Pearson & Meadan, 2018; Stahmer et al, 2019). Some immigrant mothers learned about ASD after migrating to the United States, with some denoting that they learned about ASD during their child’s evaluation (Gordillo et al, 2020). Other caregivers expressed that limited knowledge regarding ASD symptoms delayed their pursuit of an evaluation (Pearson & Meadan, 2018).…”

Section: Resultsmentioning

confidence: 99%

“…In addition to discrimination, medical and allied healthcare curricula devote sparse attention to anti-racism and cultural humility (Khan & Mian, 2020), leading to less culturally responsive care for racially and ethnically minoritized caregivers (Magaña et al, 2015). Caregivers of color report heterogeneous beliefs and knowledge regarding ASD, which may not be understood or addressed by healthcare providers (Crais et al, 2020; Gordillo et al, 2020; Luong et al, 2009; Wang & Casillas, 2013). Due to disparities in the diagnosis of ASD and receipt of culturally responsive care among racially and ethnically minoritized families, we need to understand caregivers’ experiences with the diagnostic process to improve delivery of equitable care.…”

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confidence: 99%

A systematic review examining caregivers’ of color experiences with the diagnostic process of autism spectrum disorder

Fisher

Lynch

Jacquez

et al. 2022

Autism

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There are racial/ethnic disparities in the diagnosis of autism spectrum disorder, including delayed diagnosis, discrimination, and a lack of culturally responsive care. The perspectives of caregivers of color are critical in improving delivery of equitable care. We systematically reviewed articles pertaining to experiences with the diagnostic process among caregivers of color. We entered key terms into five databases to identify literature from 2000 to 2021. Fifteen qualitative studies met inclusion criteria, representing 253 caregivers. We used inductive methods to examine themes across racial and ethnic groups and assessed the quality of included studies. Families of color identified multiple factors that negatively affected the diagnostic process. Systems-level factors included long wait lists and financial concerns. Provider-level factors included minimization of caregiver concerns, a “wait and see” approach, biases, and lack of knowledge. Caregivers also described individual (e.g. knowledge) and family factors (e.g. stigma) that delayed diagnosis and complicated the diagnostic process. Communication barriers were commonly reported, which impeded understanding of autism spectrum disorder. Some families described providers, other individuals, community networks, and self-advocacy as facilitators. Interventions targeting systems- (e.g. Medicaid expansion) and provider-level (e.g. increase training in autism spectrum disorder) factors are needed to increase equity in the autism spectrum disorder diagnostic process. Lay abstract Children of color are diagnosed with autism later than White children. Caregivers of color are also more likely than White caregivers to report that their child’s healthcare providers do not treat them as a partner, spend enough time with them, or respect their culture and values. We wanted to better understand the experiences of caregivers of color with the diagnostic process of autism spectrum disorder, from the time they discuss developmental concerns with their child’s primary care provider to when the diagnosis is shared with them. We systematically reviewed the literature and found 15 articles that explored the experiences of caregivers of color. Caregivers of color described that they faced large-scale barriers, such as the cost of appointments, transportation, and long wait lists. They also reported negative experiences with providers, including providers not taking their concerns seriously, making assumptions about caregivers, and delaying referrals for an evaluation. Caregivers stated that their own lack of knowledge of autism spectrum disorder, stigma, their family’s thoughts and opinions, and cultural differences between providers and caregivers served as barriers during the diagnostic process. Communication challenges were discussed and included use of medical and technical jargon, a lack of follow-up, language barriers, and difficulty obtaining high-quality interpreters. Some families described providers, other individuals, community networks, and self-advocacy as helpful during the diagnostic process. Large-scale changes are needed, such as increases in the number of providers who are trained in diagnosing Autism. Provider-level changes (e.g. implicit bias training) are also important for improving caregivers’ experiences.

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“…Insurance and language barriers in minority groups can also play an important role in the health access and reassessment of children with ASD. Services for ASD are underutilized by racial and ethnic minorities, with potential contributing factors including disparities in healthcare access, mental illness stigma among minority groups, and a lack of culturally informed ASD education for parents [ 22 - 24 ]. This underrepresentation of racial minorities in treatment contexts may also contribute to the racial differences in our study’s treatment-focused results, as well as to broader patterns in ASD racial demographics.…”

Section: Discussionmentioning

confidence: 99%

Impact of Antipsychotic Use on Readmission Rates in Children and Adolescents With Autism Spectrum Disorder and Irritability

Kompella¹,

Vittori²,

Kroin³

et al. 2022

Cureus

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BackgroundRisperidone and aripiprazole have been established as standard pharmacological treatments for irritability and associated aggressive behaviors in individuals with autism spectrum disorder (ASD), and are the only drugs approved by the United States Food and Drug Administration for those purposes. However, the rates of readmission with the use of these drugs in the pediatric population have not been studied, leaving a gap in the knowledge of antipsychotic effects. Readmission rates are a valuable metric of treatment efficacy that also reflect the financial burden, morbidity, and medical complications associated with multiple hospitalizations. MethodologyA retrospective study was conducted in 65 Hospital Corporation of America Healthcare hospitals within the United States from 2016 to 2019. Patients aged 6-17 years with a diagnosis of ASD with irritability were included. The primary outcome was 30-, 60-, and 90-day readmission rates. Chi-square tests of independence and post-hoc analyses were used to assess the relatedness between readmission rate and antipsychotic use, as well as the type of antipsychotic medication if used. A binary regression analysis was used to analyze the relationship between demographic characteristics and readmission rate in this population. Patients on antidepressants, anxiolytics, or medications primarily used as mood stabilizers were excluded from the study to reduce confounding effects of such medications. ResultsA total of 2,375 patients aged 6-17 years were admitted for irritability and a diagnosis of ASD. In total 323 (13.8%) patients were readmitted from this group within 30 days of discharge. After controlling for age, sex, and gender, the use of antipsychotic medication was found to decrease 30-and 90-day readmission rates with an odds ratio of 1.2 to 1.4 times compared to no antipsychotic use (p < 0.04). In patients with autism not on antipsychotics, regression analysis revealed that older age (p = 0.0471) and White race (p = 0.0471) were associated with 30-day readmission (a = 0.05). For these patients, race was also significantly associated with 60-day (p = 0.0494) and 90-day (p = 0.0416) readmission rates. In patients with autism on either risperidone or aripiprazole, age (p = 0.0393) and race (p = 0.0316) were significantly associated with 30-day readmission rate. ConclusionsAntipsychotic use reduced readmission rates within 30 days and 90 days in patients with irritability and ASD. Additionally, oral aripiprazole and oral risperidone were found to be equally effective in reducing the 30-day readmission rate, and neither was superior in comparison to the other in 30-, 60-, or 90-day readmission rates. The reduced 30-and 90-day readmission rates seen in our study with the use of antipsychotic medications emphasize the importance of antipsychotic use for individuals with ASD and irritability, even if the antipsychotic is not risperidone or aripiprazole. Groups who can particularly benefit from antipsychotic use include individuals who are refractory to first-and second...

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Mothers’ Adjustment to Autism: Exploring the Roles of Autism Knowledge and Culture

Cited by 20 publications

References 17 publications

Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder

Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder

A systematic review examining caregivers’ of color experiences with the diagnostic process of autism spectrum disorder

Impact of Antipsychotic Use on Readmission Rates in Children and Adolescents With Autism Spectrum Disorder and Irritability

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