Anti-Black racism resources for autism clinicians

Given the well-documented disparities in access to assessment, diagnosis, and high-quality services for Black autistic individuals, Autism clinicians have a duty to educate themselves about the intersection of anti-Black racism and autism services. Many clinicians wonder what they can do to address anti-Black racism in their settings. Here are some concrete recommendations and resources.

This page was adapted from our open-access (free) paper published in the journal Autism. You can access the paper here:
https://journals.sagepub.com/doi/full/10.1177/13623613211043643 

This page is maintained by Diondra Straiton and Aksheya Sridhar; please email us if you have a resource that you recommend adding to this page.

Recommendations for Anti-Racist Clinical Practice

  1. Include and amplify Black autistic voices in advisory committees at your organization.
  2. Continuously learn and acknowledge the ways in which your discipline perpetuates anti-Black racism.
  3. Recognize that cultural humility is a lifelong process and take actionable steps towards increasing your cultural humility. 
    • The resources below can help clinicians build their cultural humility.
  4. Be mindful of the complex pathway (picture below) that Black families must navigate to access and utilize clinical services. Explicitly name instances of racism.
Image of a figure titled "Pathway to access and utilize autism services, including examples of anti-Black racism." There are multiple boxes that are connected to each other with a line meant to signify the steps in the pathway). Each box also has examples of anti-Black racism. First box: Caregiver and/or provider identification of developmental concerns (e.g. social communication delays); Example: Different presentations of ASD across racial groups. Second box: Developmental surveillance by providers; Example: provider bias and dismissal of caregiver report. Third box: Age-appropriate ASD screening tools; Example: tools not validated/normed in diverse samples. Fourth box: Referral for diagnostic testing & assess for co-occurring conditions (e.g. via Early Intervention, school district); Example: High rates of misdiagnosis for Black autistic individuals. Fifth box: Apply for medical assistance if eligible by state (e.g. Medicaid waivers); Example: Level of assistance needed could differ across racial groups. Sixth box: Identification of available services; Example: Provider bias leading to less coordination of care, dismissal of service needs. Seventh box: Initial service access; Example: Less use of outpatient services, specialized services, delays in access to care. Eighth box: Continuous decision to obtain/receive services; Example: Lack of cultural humility can lead to discontinuation of services. Ninth box: Ongoing service navigation (e.g. service system transitions, re-evaluation for eligibility); Example: provider bias may disrupt or limit support in service system transitions (e.g. Early Intervention to Kindergarten).
Figure from: Straiton, D., & Sridhar, A. (2021). Short report: Call to action for autism clinicians in response to anti-Black racism. Autism, published online:. https://doi.org/10.1177/13623613211043643
  1. Advocate for system-level changes at your organization and continually assess and refine changes each year. 
    • For examples, please see our paper (above)

Resources

Wright-Constantine Structured Cultural Interview (WCSCI)

The WCSCI is a structured interview tool to help evaluate the cultural context, development, and influences on an individual and is meant to be utilized by trained clinicians in the evaluation of individuals. It is free for use, though it is currently not allowed to be altered or adapted in any way. You can read more about and access the WCSCI here: Wright-Constantine Structured Cultural Interview (WCSCI) | NYU Steinhardt

Wright, A. J., & Constantine, K. (2020). Wright-Constantine Structured Cultural Interview [WCSCI]. New York, NY: New York University.

Collaborative resource for mental health training

https://docs.google.com/document/d/1DJZVfgkz8tBfszdXmBHiiIIvQmY6vlnFveVChMtg94E/edit

Readings:

  1. Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021). Avoiding Ableist language: Suggestions for autism researchers. Autism in Adulthood, 3(1), 18–29. https://doi.org/10.1089/aut.2020.0014
  2. Foronda, C., Baptiste, D.-L., Reinholdt, M. M., & Ousman, K. (2016). Cultural humility: A concept analysis. Journal of Transcultural Nursing, 27(3), 210–217. https://doi.org/10.1177/1043659615592677
  3. Gourdine, R. M., Baffour, T. D., & Teasley, M. (2011). Autism and the African American community. Social Work in Public Health, 26(4), 454–470. https://doi.org/10.1080/19371918.2011.579499
  4. Harry, B. (2002). Trends and issues in serving culturally diverse families of children with disabilities. The Journal of Special Education, 36(3), 132–140. https://doi.org/10.1177/00224669020360030301
  5. 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. Autism in Adulthood. https://doi.org/10.1089/aut.2020.29015.drj
  6. Jones, D. R., & Mandell, D. S. (2020). To address racial disparities in autism research, we must think globally, act locally. Autism, 24(7), 1587–1589. https://doi.org/10.1177/1362361320948313
  7. Morgan, E. H., & Stahmer, A. C. (2021). Narratives of single, black mothers using cultural capital to access autism interventions in schools. British Journal of Sociology of Education, 42(1), 48–65. https://doi.org/10.1080/01425692.2020.1861927
  8. Mosley, D. V., Hargons, C. N., Meiller, C., Angyal, B., Wheeler, P., Davis, C., & Stevens-Watkins, D. (2021). Critical consciousness of anti-Black racism: A practical model to prevent and resist racial trauma. Journal of Counseling Psychology, 68(1), 1–16. https://doi.org/10.1037/cou0000430
  9. Wilson, N. M. (2015). Question-asking and advocacy by African American parents at individualized education program meetings: A social and cultural capital perspective. Multiple Voices for Ethnically Diverse Exceptional Learners, 15(2), 36–49. https://doi.org/10.5555/2158-396X.15.2.36

Online training for clinicians:

  1. Black Disability Studies (free or for continuing education credits): https://www.mitrainingcenter.org/courses/wbdsc0419noce  
  2. Racism as a Public Health Crisis: https://www.mitrainingcenter.org/courses/opp1a0620ce?_ga=2.97972703.1952282224.1622087888-1675886675.1621360300
  3. Countering Implicit Bias: https://www.mitrainingcenter.org/courses/ibuba1220noce?_ga=2.61135340.1952282224.1622087888-1675886675.1621360300
  4. Cultural Humility https://ready.web.unc.edu/section-1-foundations/module-8/
  5. Documentary on cultural humility (30 min): https://www.youtube.com/watch?v=SaSHLbS1V4w&t=482s&ab_channel=VivianChavez
  6. Free courses/toolkits on cultural humility: https://registrations.publichealthpractice.org/Training/Detail/211

Media sources:

  1. Autism in Black Families YouTube videos: https://youtube.com/playlist?list=PLXehS00uRKcgblygvZ-kb8sJou3GpNfMY
  2. Normal with Autism podcast, Autism in Black: https://www.podbean.com/media/share/pb-kbvgp-e2467a?utm_campaign=u_share_ep&utm_medium=dlink&utm_source=u_share
  3. Normal with Autism, The Catina Way: https://www.podbean.com/media/share/pb-z7nhh-ebc8e0?utm_campaign=u_share_ep&utm_medium=dlink&utm_source=u_share
  4. The Black Spectrum- https://theblkspectrum.com/ 
  5. Resources for families: https://www.ambitiousaboutautism.org.uk/sites/default/files/resources-and-downloads/resources-to-understand-race-and-racism.pdf
  6. Autistic Self Advocacy Network: https://autisticadvocacy.org/
    • This website is run by a disability rights group of autistic advocates who work to empower autistic people and organize for systems change. Resources include recommended books, policy reports, toolkits for autistic people, and some clinical resources for providers (e.g. sexual health toolkits).

Evaluation and goal setting tools:

  1. Cultural competence Self-Evaluation Checklist: http://www.coloradoedinitiative.org/wp-content/uploads/2015/10/cultural-competence-self-assessment-checklist.pdf
  2. Cultural Humility Reflective Journal: https://ready.web.unc.edu/wp-content/uploads/sites/16627/2019/05/Project-READY-Journal_5_15.pdf

Discipline-Specific Resources

Occupational Therapy:

Grenier, M.-L. (2020). Cultural competency and the reproduction of White supremacy in occupational therapy education. Health Education Journal, 79(6), 633–644. https://doi.org/10.1177/0017896920902515

Farias, L., & Simaan, J. (2020). Introduction to the Anti-Racism Virtual Issue of the Journal of Occupational Science. Journal of Occupational Science, 27(s1), 454–459. https://doi.org/10.1080/14427591.2020.1824567

Kronenberg, F. (2020). Commentary on JOS Editorial Board’s Anti-Racism Pledge. Journal of Occupational Science, 27(s1), 398–403. https://doi.org/10.1080/14427591.2020.1827483

Beagan, B. L. (2021). Commentary on racism in occupational science. Journal of Occupational Science, 28(3), 410–413. https://doi.org/10.1080/14427591.2020.1833682