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

Abstract

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.

Racial and ethnic disparities in the co‐occurrence of intellectual disability and autism: Impact of incorporating measures of adaptive functioning

“…These findings raise the question of why racial and ethnic disparities in co-occurring ID among children with ASD are not entirely eliminated after controlling for selected socioeconomic factors and incorporating adaptive scores. Extensive racial and ethnic disparities in the US in autism screening and access to autism diagnostic and intervention services ( Angell et al, 2018 ; Čolić et al, 2022 ; Constantino et al, 2020 ; Fisher et al, 2023 ; Guthrie et al, 2019 ; Magaña et al, 2013 ; Mandell et al, 2002 ; Mandell et al, 2007 ; Mandell et al, 2009 ; Pham et al, 2022 ) may explain the persistence of these differences, as exposure to intensive early intervention has been shown to boost IQ with little impact on autism severity ( Asta & Persico, 2022 ; Dawson et al, 2010 ; Reichow et al, 2018 ; Shi et al, 2021 ). Persistence of these disparities might also be explained by disparities within the diagnostic process leading to under-identification of autism in Black and Hispanic children who have cognitive scores in the average or above average range, thereby inflating the proportions with low cognitive scores.…”

“…Such resources are less available to Black relative to White children in the US ( Čolić et al, 2022 ; Liu et al, 2023 ). Additionally, studies describing the experience of parents of children with autism from underrepresented racial and ethnic groups have found that parents report numerous barriers to having their children evaluated, including long wait times or low availability of service providers, racial and ethnic bias from providers, a lack of serious attention given to their concerns about their child’s behavior or development, and language barriers that limited caregivers’ ability to communicate effectively with their child’s healthcare provider ( Čolić et al, 2022 ; Constantino et al, 2020 ; Fisher et al, 2023 ; Zuckerman et al, 2017 ). All of these factors likely lead to preventable delays in diagnosis and subsequent delays in receipt of early intervention services shown to improve both cognitive scores and adaptive behavior.…”

“…Cultural expectations of child behavior and stigma surrounding developmental disabilities may also contribute to delayed identification of autism in certain populations ( Fisher et al, 2023 ; Pham & Charles, 2023 ; Zuckerman et al, 2018 ). Studies of parent reports of autism symptoms have found Black parents to be less likely than White parents to report concerns about their children’s social skills or restricted and repetitive behaviors and interests ( Azad et al, 2022 ; Donohue et al, 2019 ), even after controlling for autism severity ( Donohue et al, 2019 ), and may place more emphasis on behavioral concerns ( Mandell et al, 2007 ).…”

“…Studies of parent reports of autism symptoms have found Black parents to be less likely than White parents to report concerns about their children’s social skills or restricted and repetitive behaviors and interests ( Azad et al, 2022 ; Donohue et al, 2019 ), even after controlling for autism severity ( Donohue et al, 2019 ), and may place more emphasis on behavioral concerns ( Mandell et al, 2007 ). Persistent racial and ethnic disparities in the prevalence of autism with co-occurring ID point to the need for increased access to culturally appropriate autism diagnostic and treatment services ( Dababnah et al, 2018 ) and improved outreach to provide parents the resources to recognize symptoms of ASD ( Čolić et al, 2022 ; Fisher et al, 2023 ).…”

“…The increased ID prevalence in minoritized populations occurs in the context of historical racism and accompanying socioeconomic disadvantage, which is a leading risk factor for ID globally and disproportionately affects Black and Hispanic children in the US ( Beech et al, 2021 ; Durkin & Yeargin-Allsopp, 2018 ; Emerson, 2007 ; Patrick et al, 2021 ). The elevated prevalence of ID in minoritized groups may also be related to racial, linguistic, and cultural biases in the diagnostic process and cognitive testing instruments ( Dahl et al, 2023 ; Fisher et al, 2023 ; Gonthier, 2022 ; Guthrie et al, 2019 ; Kalb et al, 2022 ; Lozano-Ruiz et al, 2021 ; Mandell & Novak, 2005 ) as well as stigma surrounding ID diagnoses ( Fisher et al, 2023 ; Mitter et al, 2019 ), and disparities in early identification and referral for services ( Guthrie et al, 2019 ).…”