An Expert Discussion on Structural Racism in Autism Research and Practice

Jones, Desiree R.; Nicolaidis, Christina; Ellwood, Lisa J.; Garcia, Arianne; Johnson, Khalilah R.; López, Kristina; Waisman, TC

doi:10.1089/aut.2020.29015.drj

Cited by 54 publications

(27 citation statements)

References 15 publications

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“…Just as Black families must interact with a racist service system that perpetuates diagnostic and service disparities, they also experience poor quality of care once they actually access services. Black caregivers experience racist interactions with clinicians when receiving healthcare services ( Jones et al, 2020 ). Black families report lower quality of autism-related care which they attribute to dismissal of parent concerns due to racial bias from clinicians ( Stahmer et al, 2019 ).…”

Section: Access To Healthcare Services and Quality Of Carementioning

confidence: 99%

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Short report: Call to action for autism clinicians in response to anti-Black racism

Straiton

Sridhar

2021

Autism

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Anti-Black racism is a pervasive issue in the autism field that affects the autism service pathway, which ranges from identification of concerns to ongoing service navigation. In this short report, we provide a working model of the autism service pathway and highlight ways in which anti-Black racism affects all components of the pathway. We summarize the literature that demonstrates the effects of racism within autism assessment, treatment, and quality of care. We end with six recommendations for systemic change that clinicians can take: (1) including and amplifying Black autistic voices within their organization, (2) continuously learning about and acknowledging the ways in which their discipline perpetuates anti-Black racism, (3) recognizing that cultural humility is a lifelong process, (4) being mindful of the complex pathway that families must navigate to receive autism services, particularly when working with Black individuals, and (5) advocating for system-level changes within their organization and refining changes that are made. Lay abstract Black autistic people experience anti-Black racism when interacting with service systems and the clinicians in those systems. In this article, we describe the various steps families take to get services and how anti-Black racism makes that process even harder. We discuss research that shows the negative effects of anti-Black racism in autism assessment, treatment, and quality of care. We then provide five recommendations that clinicians should follow to reduce anti-Black racism in the autism field: (1) find Black autistic people and listen to their opinions about your organization, (2) always keep learning about how your profession promotes anti-Black racism, (3) recognize that the process of a clinician learning to be culturally humble takes time and is never “complete,” (4) pay attention to all of the steps that families must take to receive autism services and how these steps are even harder for Black individuals, and (5) advocate for your organization to make systems-level changes in their policies and procedures.

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Section: Access To Healthcare Services and Quality Of Carementioning

confidence: 99%

“…The Journal of Special Education, 36 (3), 132–140. https://doi.org/10.1177/00224669020360030301 Jones, D. R., Nicolaidis, C., Ellwood, L. J., Garcia, A., Johnson, K. R., Lopez, K., & Waisman, T. (2020) . An expert discussion on structural racism in autism research and practice.…”

Section: Additional Suggested Readingsmentioning

confidence: 99%

Short report: Call to action for autism clinicians in response to anti-Black racism

Straiton

Sridhar

2021

Autism

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“…Perhaps most importantly, the sample in this study consisted exclusively of White, self-identified males to control for confounding effects of cross-gender and cross-race interactions. Given the impact of gender (Milner et al, 2019;Lai and Szatmari, 2020) and racial biases (Giwa Onaiwu, 2020;Jones et al, 2020) on the experiences of autistic adults, the results of this study may have differed in important ways for a more diverse sample. Finally, participants were young adults with verbal IQs in the average range, so the impact of AAT may not generalize to the broader population of autistic people, including non-speaking people, those with an intellectual disability, or older adults.…”

Section: Discussionmentioning

confidence: 98%

Greater Social Interest Between Autistic and Non-autistic Conversation Partners Following Autism Acceptance Training for Non-autistic People

et al. 2021

Self Cite

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Bi-directional differences in social communication and behavior can contribute to poor interactions between autistic and non-autistic (NA) people, which in turn may reduce social opportunities for autistic adults and contribute to poor outcomes. Historically, interventions to improve social interaction in autism have focused on altering the behaviors of autistic people and have ignored the role of NA people. Recent efforts to improve autism understanding among NA adults via training have resulted in more favorable views toward autistic people, yet it remains unknown whether these benefits extend to real-world interactions between autistic and NA people. The current study explores whether a brief autism acceptance training (AAT) program can improve social interactions between autistic and NA adults. Thirty-nine NA males were randomly assigned to complete AAT or a no-training control condition, then participated in a 5-min unstructured conversation with an unfamiliar autistic male (n = 39). Following the conversation, participants rated their perceptions of interaction quality, first impressions of their partner, and their interest in future interactions with their partner. In dyads where the NA individual completed AAT, both the autistic and NA person endorsed greater future interest in hanging out with their partner relative to dyads in which the NA adult did not complete AAT. However, other social interaction outcomes, including ratings of interaction quality and first impressions of autistic partners, largely did not differ between training and no-training conditions, and assessments of the interaction were largely unrelated for autistic and NA partners within dyads. Results also indicated that NA participants, but not autistic participants, demonstrated substantial correspondence between evaluations of their partner and the interaction, suggesting that autistic adults may place less weight on trait judgments when assessing the quality of an interaction. These findings suggest that the brief AAT for NA adults used in this study may increase mutual social interest in real-world interactions between NA and autistic adults, but more systematic changes are likely needed to bridge divides between these individuals. Future work with larger, more diverse samples is recommended to further explore whether interventions targeting NA adults are beneficial for improving autistic experiences within NA social environments.

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“…While our sample had good diversity in terms of gender, age, and length of time since diagnosis, all participants were White British or European. It is important to consider that the views of autistic people from other ethnic backgrounds may differ, and they may have specific support needs and preferences ( Jones et al, 2020 ). Additionally, all participants were based in the United Kingdom: their experiences of services may be shaped by United Kingdom norms and findings may not apply to autistic people living outside the United Kingdom.…”

Section: Discussionmentioning

confidence: 99%

“A Group of Fellow Travellers Who Understand”: Interviews With Autistic People About Post-diagnostic Peer Support in Adulthood

Crompton

Hallett²,

McAuliffe

et al. 2022

Front. Psychol.

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Receiving a diagnosis of autism in adulthood can be a life changing event, impacting identity, relationships, and mental health. A lack of post-diagnostic support has been highlighted by autistic adults, their allies, clinicians, and service providers. It can be a source of distress for autistic adults, reinforcing feelings of social isolation and rejection. Peer support could be a cost-effective, flexible, and sustainable model to provide community-based support for autistic adults. However, there is little research on the value of peer support, despite calls from the autistic community. This qualitative study explored autistic experiences and needs post-diagnosis, identifying specific ways that peer support may benefit them, and exploring the limitations of peer support. Twelve autistic adults who had all received an autism diagnosis in adulthood completed a semi-structured interview focussing on the diagnostic experience, post-diagnostic support needed and provided, engagement with the autistic community, and post-diagnostic peer support. Thematic analysis of interview transcripts resulted in four themes: (1) Mismatch in support needed and provided; (2) Community connection; (3) Flexible and personalised support; and (4) Sustainability. Participants indicated that peer support may be a useful mechanism to support autistic adults’ post-diagnosis and offers unique opportunities not available through other support channels. Though informal peer support exists, it could be more sustainable and effective if well-supported and funded.

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An Expert Discussion on Structural Racism in Autism Research and Practice

Cited by 54 publications

References 15 publications

Short report: Call to action for autism clinicians in response to anti-Black racism

Short report: Call to action for autism clinicians in response to anti-Black racism

Greater Social Interest Between Autistic and Non-autistic Conversation Partners Following Autism Acceptance Training for Non-autistic People

“A Group of Fellow Travellers Who Understand”: Interviews With Autistic People About Post-diagnostic Peer Support in Adulthood

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