Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities

Maye, Melissa; Boyd, Brian A.; Martínez-Pedraza, Frances; Halladay, Alycia; Thurm, Audrey; Mandell, David S.

doi:10.1007/s10803-021-05250-y

Cited by 52 publications

(36 citation statements)

References 41 publications

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“…The systematic exclusion of Black, Indigenous, and People of Color (BIPOC) in clinical research is a longstanding problem, despite awareness ( Durkin et al, 2015 ), empirical evidence ( Henrich et al, 2010 ), and calls to action ( Maye et al, 2021 ). Insufficient efforts to include BIPOC with disabilities ( Annamma et al, 2013 ) and inconsistent reporting practices ( Choy et al, 2021 ) reinforce the underrepresentation of already minoritized individuals – that is, they multiply marginalize BIPOC from clinical populations.…”

Section: Introductionmentioning

confidence: 99%

“…For example, Parker and Ricard (2022) called for researchers, engineers, Black hairstylists and barbers, and research participants to co-develop accommodations for diverse hairstyles. Additional participants in the larger effort would include BIPOC community members ( Lewis and Oyserman, 2016 ; Maye et al, 2021 ), policymakers and commercial organizations ( National Institutes of Health, 2021 ), legal and educational theorists to generate models of underrepresentation ( Powell, 2012 ; Annamma et al, 2013 ), and psychometricians to develop analytical approaches using intersectionality theory ( Bauer et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

“…Underrepresentation means there is limited information on how to engage BIPOC from clinical populations in research, which requires being sensitive to the intersection of race and disability ( Maye et al, 2021 ). For instance, nearly all (94%) autism studies exclude individuals with intellectual disabilities, but studies typically do not report information on intelligence or limitations to generalizability ( Russell et al, 2019 ).…”

Section: Introductionmentioning

confidence: 99%

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Incorporating Dis/ability Studies and Critical Race Theory to combat systematic exclusion of Black, Indigenous, and People of Color in clinical neuroscience

2022

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This article reviews some of the ideological forces contributing to the systematic exclusion of Black, Indigenous, and People of Color (BIPOC) in clinical neuroscience. Limitations of functional near-infrared spectroscopy (fNIRS) and other methods systematically exclude individuals with coarse or curly hair and darker skin. Despite these well-known limitations, clinical neuroscience manuscripts frequently fail to report participant race or ethnicity or reasons for excluding participants. Grounding the discussion in Dis/ability Studies and Critical Race Theory (DisCrit), we review factors that exacerbate exclusion and contribute to the multiple marginalization of BIPOC, including (a) general methodological issues, (b) perceptions about race and disability, and (c) underreporting of methods. We also present solutions. Just as scientific practices changed in response to the replication crisis, we advocate for greater attention to the crisis of underrepresentation in clinical neuroscience and provide strategies that serve to make the field more inclusive.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Incorporating Dis/ability Studies and Critical Race Theory to combat systematic exclusion of Black, Indigenous, and People of Color in clinical neuroscience

2022

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“…Future research on child maltreatment among autistic youth should include consideration of caregiver and family trauma, in order to better understand the consequences of caregiver trauma for youth as well as why caregiver trauma and child maltreatment are linked across generations. It will be essential for research to actively prioritize the inclusion, prioritization, and affirmation of racially, ethnically, and socioeconomically diverse communities in autism research, in consultation and collaboration with diverse autistic communities (see Maye et al, 2021 andStraiton &Sridhar, 2021 for urgently and immediately needed actions for enhancing equity in autism research).…”

Section: Limitations and Future Directionsmentioning

confidence: 99%

Intergenerational trauma: Parental PTSD and parent‐reported child abuse subtypes differentially relate to admission characteristics in the autism inpatient collection

2022

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Autistic youth experience high rates of maltreatment. Little research has considered how distinct abuse dimensions differentially relate to meaningful outcomes, nor taken an intergenerational approach to consider how caregiver trauma and child maltreatment are related. This study sought to identify how parent-reported child abuse subtypes and parent posttraumatic stress disorder (PTSD) relate to each other and to admission characteristics upon inpatient service entry. Autistic youth (N = 527; 79% White, 21.3% girls, mean age = 12.94 years) participated in the autism inpatient collection. Parents reported on child abuse subtypes (physical, sexual, emotional) and their own PTSD, child behavior and emergency services, and parenting stress. Youth of parents with PTSD were nearly three times more likely to have parent-reported physical and emotional abuse. Autistic girls were more likely to experience parent-reported sexual abuse and a higher number of subtypes. Lower income related to higher rates of parent-reported child emotional abuse and parent PTSD. Emotional abuse associated with child behavior whereas both child physical and emotional abuse related to emergency services. Reported parent PTSD associated with child behavior and parental distress. When considered jointly, parent PTSD and number of parent-reported child abuse subtypes differentially related to child behavior and interacted to predict psychiatric hospitalizations. Intergenerational continuity of trauma is important to consider among autistic youth, and both parent-reported child abuse and parent PTSD relate to admission characteristics. Critical limitations include reliance on binary parent reports of child abuse and parent PTSD and the low representation of youth of minoritized identities. Implications for trauma-informed care are discussed.

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“…Furthermore, minority families are consistently under-represented in evidencebased treatments and services in autism (Broder-Fingert et al, 2020;Imm et al, 2019;Koh et al, 2011;Liptak et al, 2008;Mandell et al, 2002). Novel and expedient solutions are required to increase the support available to all families impacted by autism, which will require culturally competent researchers to partner with and gain the trust of communities (Maye et al, 2021). We describe a novel practice-based evidence approach to the development of autism interventions by the Black community and for the Black community.…”

mentioning

confidence: 98%

A culturally grounded autism parent training program with Black parents

Kaiser

Villalobos

Locke

et al. 2022

Autism

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Parent training (i.e. group-based supports and psychoeducation aimed at parent as primary agent of change) in Autism Spectrum Disorders (autism) is well-documented as an Evidence-Based Intervention designed to increase advocacy, knowledge, and empowerment. While research on Parent Training acknowledges the cultural limitations, the field lacks culturally grounded models. Furthermore, barriers in diagnosis, service acquisition, and inclusion of under-represented populations including Black families have been established; however, research programs have traditionally failed to include these families. This study aims to provide a first toward addressing the lack of inclusion. We describe the practice-based implementation of a culturally concordant Parent Training program (Spectrum of Care) developed by a community organization (the Color of Autism) as well as feedback from parents after the implementation process. The findings indicate that culturally grounded strategies could promote engagement and empowerment of Black families. There, however, is still a need for research that attends to parental mistrust and examines culturally grounded strategies more closely. Lay abstract Parent training programs have been well-studied in Autism Spectrum Disorders and shown to increase a parent’s feeling of empowerment, advocacy skills, and treatment enrollment for their child. The majority of parent training interventions have been developed without considering the unique needs of under-represented communities, such as the Black community. Black children with autism are not only misdiagnosed or not diagnosed at all, but are not accessing services equally compared to their White peers. There is an urgent need for culturally adapted interventions in order to decrease the disparity gap. The Color of Autism Foundation developed and ran a parent training program for Black parents of children with autism. The program was grounded in two key features: (1) creating a circle of support for parents to connect and heal from ongoing and historical racial trauma and (2) using parents of Black children with autism as the main facilitators. We believe this increased parent’s ability to engage in the educational aspects of the training. Overall, parents reported high levels of satisfaction with the training were highly engaged (attended an average of five of six sessions) and reported high levels of empowerment. Parents also reported continued mistrust in the medical and research community and a need for more Black providers. Further work should examine the relationship of the parent and provider in autism treatment and study the impact of circles of healing for Black families.

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Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities

Cited by 52 publications

References 41 publications

Incorporating Dis/ability Studies and Critical Race Theory to combat systematic exclusion of Black, Indigenous, and People of Color in clinical neuroscience

Incorporating Dis/ability Studies and Critical Race Theory to combat systematic exclusion of Black, Indigenous, and People of Color in clinical neuroscience

Intergenerational trauma: Parental PTSD and parent‐reported child abuse subtypes differentially relate to admission characteristics in the autism inpatient collection

A culturally grounded autism parent training program with Black parents

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