948313 editorial2020
AUT0010.1177/1362361320948313AutismEditorial
Editorial
To address racial disparities in autism research, we must think globally, act locally A history of systemic racism has led to too few Black Americans working in the sciences. Autism research is not immune to this problem, and the dearth of Black scientists and clinicians likely has contributed to health disparities among Black autistic people (Jackson & Nadine Gracia, 2014). People from underrepresented minority groups who are trained in science and medicine are much more likely to study and care for disenfranchised minorities than White scientists and practitioners (Cantor et al., 1996; Komaromy et al., 1996). By recruiting and supporting Black scientists and clinicians, we can address the underrepresentation of Black autistic people in research studies, helping to reduce health disparities and benefitting autism research as a whole. On average, Black Americans receive worse healthcare and have poorer health outcomes than White Americans. These disparities are present regardless of education or income (Williams et al., 2016), suggesting that cultural barriers and provider biases may contribute (American College of Physicians, 2010). A history of ethical violations towards Black research participants (e.g. Tuskegee syphilis trials) has fostered considerable distrust towards clinical research within the Black community (Boulware et al., 2003; Hooper et al., 2019), contributing to low engagement. These disparities are evident in autism clinical practice and research. Black children are less likely to be diagnosed with autism spectrum disorder (ASD) than White children (Mandell et al., 2009), despite Black and White parents reporting first concerns when their children are of similar ages (Jang et al., 2014), and Black autistic children are often misdiagnosed with other psychiatric disorders (Mandell et al., 2007). Among those diagnosed with autism, clinical presentation is more severe, on average, than that of White children, suggesting that Black children with less impairing symptoms are missed altogether (Jarquin et al., 2011). These diagnostic disparities may reflect providers’ racial biases; many Black caregivers of autistic children state that their provider has expressed doubts about the parents’ knowledge of autism or made racist assumptions about their family structure or income (Dababnah et al., 2018). These assumptions may cause providers to dismiss Black caregivers’ concerns about ASD (Magaña et al., 2015; Pearson & Meadan, 2018). Black caregivers also report distrust of research (Shaia et al., 2020), creating an additional barrier for Black autistic
Autism 2020, Vol. 24(7) 1587–1589 © The Author(s) 2020 Article reuse guidelines: sagepub.com/journals-permissions https://doi.org/10.1177/1362361320948313 DOI: 10.1177/1362361320948313 journals.sagepub.com/home/aut
people, who have been historically underrepresented in autism research. This underrepresentation continues today. A meta-analysis of intervention studies found that most failed to report the racial and ethnic demographics of participants; the few studies that included this information reported overwhelmingly White participants (West et al., 2016). These disparities highlight a broader culture of exclusion and ignoring people of colour in autism research. Perhaps unsurprisingly, this exclusion extends to Black autism researchers. Although the International Society for Autism Research (INSAR) has made concerted efforts to improve diversity, the society has provided no metrics of its success and the annual conference has had no Black keynote speakers in the 18 years for which records are available online. While diversity may have increased among students and early career researchers, underrepresentation persists at all career levels. Although it is impossible to ascertain the race with which awardees identify without asking them, our search of federally and privately funded autism-related fellowship applications at the doctoral, postdoctoral and junior faculty levels revealed very few Black trainees. While select grants and fellowships in autism research prioritize underrepresented trainees, these apply exclusively to research on disparities. This restricts Black students’ opportunities in other research areas and promotes diversity in a very narrow range of autism research. Organizations such as INSAR further limit the platform of Black researchers by merging cultural diversity among researchers with the connected, but distinct issue of cultural diversity among the people they study. While many related research professional organizations (Society for Research in Child Development, American Psychological Association, and Society for Neuroscience) include caucuses to support the needs of Black researchers, no such caucus, committee, or organization currently exists in autism research. INSAR has recently published a statement (INSAR Board of Directors and Cultural Diversity Committee, 2020) acknowledging the lack of diversity in autism research and promising to address these issues, but this alone is not sufficient for dismantling the toxic effects of systemic racism in our field. Instead, individuals, organizations, and institutions must work together, taking sustained action to address these inequalities and promote Black autism researchers.
1588 Increasing representation of Black researchers and clinicians is a valuable endpoint in itself; it also will help address research and health disparities affecting Black autistic people. Recruiting Black scientists and clinicians facilitates better relationships with the Black community. Black Americans report greater satisfaction when they have a Black doctor (Laveist & Nuru-Jeter, 2002), and a recent randomized clinical trial (RCT) found that Black men were more likely to agree to invasive health screenings when their doctor was also Black (Alsan et al., 2019). Other research suggests that representative research teams can increase recruitment and retention of Black participants in clinical studies (Sankaré et al., 2015; Taani et al., 2020). In autism research, Black clinicians and scientists can help increase ASD screening and research in Black communities, addressing disparities in diagnosis and treatment. A quote from one study highlights the importance of racial representation in research and practice: ‘when you’re sitting in a room with [people] who don’t look like you, you feel that [they] can’t sympathize with what I’m going through’ (Shaia et al., 2020). While racial disparities exist across every area of science, we should be particularly focused on our own disciplines and content area – that is, we should think globally and act locally. One of the most important investments we can make to ameliorate racial disparities in ASD is to recruit, develop and support Black students and trainees to create the next generation of scientists and practitioners. The dearth of Black people in visible leadership roles in autism research and practice reflects a system that is failing to provide equality of opportunity. We must all work together, actively, thoughtfully, and energetically, to resolve this, supporting the needs of Black autistic individuals and greatly enhancing the field more broadly. We offer the following recommendations for individuals, organizations, and institutions to help elevate Black autism researchers. We note that White people occupy almost all leadership positions and that enacting these recommendations will require those leaders to share power, rather than relying on the few Black leaders in our field. •• Develop Black autism researchers at all career levels. ○ Seek funding for positions that support Black undergraduates and research assistants in autism research labs. Black students are disproportionately unable to accept unpaid research positions due to income constraints. ○ Increase funding opportunities for Black graduate students and postdocs, including those whose work does not relate to race or culture. ○ Conduct job searches focused on recruiting Black faculty, whose experiences can help them recruit and mentor Black students.
Autism 24(7) ○ Make space for Black researchers in more senior roles by funding and conducting collaborative projects that allow them to serve as PIs. ○ Include information on race/ethnicity for INSAR members and conference attendees as part of the Annual Report. •• Create social capital for Black autism researchers and practitioners ○ Increase representation of Black researchers in leadership positions, including organizational boards, journal editorial boards, and conference committees, allowing Black people to contribute to decision-making processes. ○ Develop programs to support mentorship and networking opportunities for Black students and early career researchers, giving them a source of advice on how to navigate race and academia. ○ Separate events focused on underrepresented researchers from those focused on culturally inclusive research. This will provide Black researchers with a platform to connect and discuss their experiences. • Identify and address the inequalities and injustices disproportionately affecting Black autism researchers and autistic people. ○ Examine the role that systemic racism plays in labs, institutions, and organizations, and work to address these issues. This will help to foster an inclusive environment that improves the experiences of Black researchers and participants. ○ Evaluate researchers based on their science and ideas instead of their institutional prestige or academic pedigree. While a general culture of elitism exists in academia, this issue particularly disadvantages Black scientists, who may have attended or worked for less prestigious institutions due to social barriers. ○ Extend interviews to any Black candidates who fulfill essential job criteria. A colleague of ours has used this approach to create a personal affirmative action pledge, helping to increase the representation of qualified Black researchers. •• Listen to Black researchers and the Black autistic community. ○ Identify Black researchers and autistic people to form an advisory committee, which can oversee research projects and suggest ways to improve cultural sensitivity. ○ Pay consultants and participants for their time and offer flexibility in scheduling. ○ Foster an empowering climate where Black people feel comfortable sharing their thoughts and opinions. These recommendations are far from exhaustive, and we recognize that individuals, depending on their position
Editorial and resources, will vary in their ability to enact them. We also recognize that many of these recommendations require systemic change and that for many of us, our role will be one of advocacy. As Black voices gain more representation within autism research, we hope that they can shape further dialogue on these issues. The journal, Autism, is equally complicit in not addressing these issues. We have far too few Black board members and no Black action editors. We will take a hard look at ourselves and develop concrete steps to improve our anti-racist and inclusive policies. We hope other organizations will do the same. References Alsan, M., Garrick, O., & Graziani, G. (2019). Does diversity matter for health? Experimental evidence from Oakland. American Economic Review, 109(12), 4071–4111. https:// doi.org/10.1257/aer.20181446 American College of Physicians. (2010). Racial and ethnic disparities in health care, updated 2010. Boulware, L. E., Cooper, L. A., Ratner, L. E., LaVeist, T. A., & Powe, N. R. (2003). Race and trust in the health care system. Public Health Reports, 118(4), 358–365. https://doi. org/10.1016/S0033-3549(04)50262-5 Cantor, J. C., Miles, E. L., Baker, L. C., & Barker, D. C. (1996). Physician service to the underserved: Implications for affirmative action in medical education. Inquiry, 33(2), 167–180. Dababnah, S., Shaia, W. E., Campion, K., & Nichols, H. M. (2018). ‘We had to keep pushing’: Caregivers’ perspectives on autism screening and referral practices of black children in primary care. Intellectual and Developmental Disabilities, 56(5), 321–336. https://doi.org/10.1352/19349556-56.5.321 Hooper, M. W., Mitchell, C., Marshall, V. J., Cheatham, C., Austin, K., Sanders, K., . . . Grafton, L. L. (2019). Understanding multilevel factors related to urban community trust in healthcare and research. International Journal of Environmental Research and Public Health, 16(18), 3280. https://doi.org/10.3390/ijerph16183280 INSAR Board of Directors and Cultural Diversity Committee. (2020). INSAR statements on discrimination and the black lives matter movement. https://www.autism-insar.org/page/ INSARstatement Jackson, C. S., & Nadine Gracia, J. (2014). Addressing health and health-care disparities: The role of a diverse workforce and the social determinants of health. Public Health Reports, 129(1, Suppl. 2), 57–61. https://doi.org/10.1177/0 0333549141291s211 Jang, J., Matson, J. L., Cervantes, P. E., & Konst, M. J. (2014). The relationship between ethnicity and age of first concern in toddlers with autism spectrum disorder. Research in Autism Spectrum Disorders, 8(7), 925–932. https://doi. org/10.1016/j.rasd.2014.04.003 Jarquin, V. G., Wiggins, L. D., Schieve, L. A., & Van NaardenBraun, K. (2011). Racial disparities in community identification of autism spectrum disorders over time; Metropolitan Atlanta, Georgia, 2000-2006. Journal of Developmental and Behavioral Pediatrics, 32(3), 179–187. https://doi. org/10.1097/DBP.0b013e31820b4260
1589 Komaromy, M., Grumbach, K., Drake, M., Vranizan, K., Lurie, N., Keane, D., & Bindman, A. B. (1996). The role of black and Hispanic physicians in providing health care for underserved populations. New England Journal of Medicine, 334(20), 1305–1310. https://doi.org/10.1056/ NEJM199605163342006 Laveist, T. A., & Nuru-Jeter, A. (2002). Is doctor-patient race concordance associated with greater satisfaction with care? Journal of Health and Social Behavior, 43(3), 296–306. https://doi.org/10.2307/3090205 Magaña, S., Parish, S. L., & Son, E. (2015). Have racial and ethnic disparities in the quality of health care relationships changed for children with developmental disabilities and ASD? American Journal on Intellectual and Developmental Disabilities, 120(6), 504–513. https://doi.org/10.1352/1944-7558-120.6.504 Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802. https://doi. org/10.1007/s10803-006-0314-8 Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., . . . Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498. https://doi.org/10.2105/ AJPH.2007.131243 Pearson, J. N., & Meadan, H. (2018). African American parents’ perceptions of diagnosis and services for children with autism. Education and Training in Autism and Developmental Disabilities, 53(1), 17–32. Sankaré, I. C., Bross, R., Brown, A. F., del Pino, H. E., Jones, L. F., Morris, D. M., . . . Kahn, K. L. (2015). Strategies to build trust and recruit African American and Latino community residents for health research: A cohort study. Clinical and Translational Science, 8(5), 412–420. https:// doi.org/10.1111/cts.12273 Shaia, W. E., Nichols, H. M., Dababnah, S., Campion, K., & Garbarino, N. (2020). Brief report: Participation of Black and African-American families in autism research. Journal of Autism and Developmental Disorders, 50, 1841–1846. https://doi.org/10.1007/s10803-019-03926-0 Taani, M. H., Zabler, B., Fendrich, M., & Schiffman, R. (2020). Lessons learned for recruitment and retention of lowincome African Americans. Contemporary Clinical Trials Communications, 17, 100533. https://doi.org/10.1016/j. conctc.2020.100533 West, E. A., Travers, J. C., Kemper, T. D., Liberty, L. M., Cote, D. L., McCollow, M. M., & Stansberry Brusnahan, L. L. (2016). Racial and ethnic diversity of participants in research supporting evidence-based practices for learners with autism spectrum disorder. Journal of Special Education, 50(3), 151–163. https://doi.org/10.1177/0022466916632495 Williams, D. R., Priest, N., & Anderson, N. B. (2016). Understanding associations among race, socioeconomic status, and health: Patterns and prospects. Health Psychology, 35(4), 407–411. https://doi.org/10.1037/hea0000242
Desiree R Jones1 and David S Mandell2 1 The University of Texas at Dallas, USA 2 University of Pennsylvania, USA
AUT0010.1177/1362361320948313AutismEditorial
Editorial
To address racial disparities in autism research, we must think globally, act locally A history of systemic racism has led to too few Black Americans working in the sciences. Autism research is not immune to this problem, and the dearth of Black scientists and clinicians likely has contributed to health disparities among Black autistic people (Jackson & Nadine Gracia, 2014). People from underrepresented minority groups who are trained in science and medicine are much more likely to study and care for disenfranchised minorities than White scientists and practitioners (Cantor et al., 1996; Komaromy et al., 1996). By recruiting and supporting Black scientists and clinicians, we can address the underrepresentation of Black autistic people in research studies, helping to reduce health disparities and benefitting autism research as a whole. On average, Black Americans receive worse healthcare and have poorer health outcomes than White Americans. These disparities are present regardless of education or income (Williams et al., 2016), suggesting that cultural barriers and provider biases may contribute (American College of Physicians, 2010). A history of ethical violations towards Black research participants (e.g. Tuskegee syphilis trials) has fostered considerable distrust towards clinical research within the Black community (Boulware et al., 2003; Hooper et al., 2019), contributing to low engagement. These disparities are evident in autism clinical practice and research. Black children are less likely to be diagnosed with autism spectrum disorder (ASD) than White children (Mandell et al., 2009), despite Black and White parents reporting first concerns when their children are of similar ages (Jang et al., 2014), and Black autistic children are often misdiagnosed with other psychiatric disorders (Mandell et al., 2007). Among those diagnosed with autism, clinical presentation is more severe, on average, than that of White children, suggesting that Black children with less impairing symptoms are missed altogether (Jarquin et al., 2011). These diagnostic disparities may reflect providers’ racial biases; many Black caregivers of autistic children state that their provider has expressed doubts about the parents’ knowledge of autism or made racist assumptions about their family structure or income (Dababnah et al., 2018). These assumptions may cause providers to dismiss Black caregivers’ concerns about ASD (Magaña et al., 2015; Pearson & Meadan, 2018). Black caregivers also report distrust of research (Shaia et al., 2020), creating an additional barrier for Black autistic
Autism 2020, Vol. 24(7) 1587–1589 © The Author(s) 2020 Article reuse guidelines: sagepub.com/journals-permissions https://doi.org/10.1177/1362361320948313 DOI: 10.1177/1362361320948313 journals.sagepub.com/home/aut
people, who have been historically underrepresented in autism research. This underrepresentation continues today. A meta-analysis of intervention studies found that most failed to report the racial and ethnic demographics of participants; the few studies that included this information reported overwhelmingly White participants (West et al., 2016). These disparities highlight a broader culture of exclusion and ignoring people of colour in autism research. Perhaps unsurprisingly, this exclusion extends to Black autism researchers. Although the International Society for Autism Research (INSAR) has made concerted efforts to improve diversity, the society has provided no metrics of its success and the annual conference has had no Black keynote speakers in the 18 years for which records are available online. While diversity may have increased among students and early career researchers, underrepresentation persists at all career levels. Although it is impossible to ascertain the race with which awardees identify without asking them, our search of federally and privately funded autism-related fellowship applications at the doctoral, postdoctoral and junior faculty levels revealed very few Black trainees. While select grants and fellowships in autism research prioritize underrepresented trainees, these apply exclusively to research on disparities. This restricts Black students’ opportunities in other research areas and promotes diversity in a very narrow range of autism research. Organizations such as INSAR further limit the platform of Black researchers by merging cultural diversity among researchers with the connected, but distinct issue of cultural diversity among the people they study. While many related research professional organizations (Society for Research in Child Development, American Psychological Association, and Society for Neuroscience) include caucuses to support the needs of Black researchers, no such caucus, committee, or organization currently exists in autism research. INSAR has recently published a statement (INSAR Board of Directors and Cultural Diversity Committee, 2020) acknowledging the lack of diversity in autism research and promising to address these issues, but this alone is not sufficient for dismantling the toxic effects of systemic racism in our field. Instead, individuals, organizations, and institutions must work together, taking sustained action to address these inequalities and promote Black autism researchers.
1588 Increasing representation of Black researchers and clinicians is a valuable endpoint in itself; it also will help address research and health disparities affecting Black autistic people. Recruiting Black scientists and clinicians facilitates better relationships with the Black community. Black Americans report greater satisfaction when they have a Black doctor (Laveist & Nuru-Jeter, 2002), and a recent randomized clinical trial (RCT) found that Black men were more likely to agree to invasive health screenings when their doctor was also Black (Alsan et al., 2019). Other research suggests that representative research teams can increase recruitment and retention of Black participants in clinical studies (Sankaré et al., 2015; Taani et al., 2020). In autism research, Black clinicians and scientists can help increase ASD screening and research in Black communities, addressing disparities in diagnosis and treatment. A quote from one study highlights the importance of racial representation in research and practice: ‘when you’re sitting in a room with [people] who don’t look like you, you feel that [they] can’t sympathize with what I’m going through’ (Shaia et al., 2020). While racial disparities exist across every area of science, we should be particularly focused on our own disciplines and content area – that is, we should think globally and act locally. One of the most important investments we can make to ameliorate racial disparities in ASD is to recruit, develop and support Black students and trainees to create the next generation of scientists and practitioners. The dearth of Black people in visible leadership roles in autism research and practice reflects a system that is failing to provide equality of opportunity. We must all work together, actively, thoughtfully, and energetically, to resolve this, supporting the needs of Black autistic individuals and greatly enhancing the field more broadly. We offer the following recommendations for individuals, organizations, and institutions to help elevate Black autism researchers. We note that White people occupy almost all leadership positions and that enacting these recommendations will require those leaders to share power, rather than relying on the few Black leaders in our field. •• Develop Black autism researchers at all career levels. ○ Seek funding for positions that support Black undergraduates and research assistants in autism research labs. Black students are disproportionately unable to accept unpaid research positions due to income constraints. ○ Increase funding opportunities for Black graduate students and postdocs, including those whose work does not relate to race or culture. ○ Conduct job searches focused on recruiting Black faculty, whose experiences can help them recruit and mentor Black students.
Autism 24(7) ○ Make space for Black researchers in more senior roles by funding and conducting collaborative projects that allow them to serve as PIs. ○ Include information on race/ethnicity for INSAR members and conference attendees as part of the Annual Report. •• Create social capital for Black autism researchers and practitioners ○ Increase representation of Black researchers in leadership positions, including organizational boards, journal editorial boards, and conference committees, allowing Black people to contribute to decision-making processes. ○ Develop programs to support mentorship and networking opportunities for Black students and early career researchers, giving them a source of advice on how to navigate race and academia. ○ Separate events focused on underrepresented researchers from those focused on culturally inclusive research. This will provide Black researchers with a platform to connect and discuss their experiences. • Identify and address the inequalities and injustices disproportionately affecting Black autism researchers and autistic people. ○ Examine the role that systemic racism plays in labs, institutions, and organizations, and work to address these issues. This will help to foster an inclusive environment that improves the experiences of Black researchers and participants. ○ Evaluate researchers based on their science and ideas instead of their institutional prestige or academic pedigree. While a general culture of elitism exists in academia, this issue particularly disadvantages Black scientists, who may have attended or worked for less prestigious institutions due to social barriers. ○ Extend interviews to any Black candidates who fulfill essential job criteria. A colleague of ours has used this approach to create a personal affirmative action pledge, helping to increase the representation of qualified Black researchers. •• Listen to Black researchers and the Black autistic community. ○ Identify Black researchers and autistic people to form an advisory committee, which can oversee research projects and suggest ways to improve cultural sensitivity. ○ Pay consultants and participants for their time and offer flexibility in scheduling. ○ Foster an empowering climate where Black people feel comfortable sharing their thoughts and opinions. These recommendations are far from exhaustive, and we recognize that individuals, depending on their position
Editorial and resources, will vary in their ability to enact them. We also recognize that many of these recommendations require systemic change and that for many of us, our role will be one of advocacy. As Black voices gain more representation within autism research, we hope that they can shape further dialogue on these issues. The journal, Autism, is equally complicit in not addressing these issues. We have far too few Black board members and no Black action editors. We will take a hard look at ourselves and develop concrete steps to improve our anti-racist and inclusive policies. We hope other organizations will do the same. References Alsan, M., Garrick, O., & Graziani, G. (2019). Does diversity matter for health? Experimental evidence from Oakland. American Economic Review, 109(12), 4071–4111. https:// doi.org/10.1257/aer.20181446 American College of Physicians. (2010). Racial and ethnic disparities in health care, updated 2010. Boulware, L. E., Cooper, L. A., Ratner, L. E., LaVeist, T. A., & Powe, N. R. (2003). Race and trust in the health care system. Public Health Reports, 118(4), 358–365. https://doi. org/10.1016/S0033-3549(04)50262-5 Cantor, J. C., Miles, E. L., Baker, L. C., & Barker, D. C. (1996). Physician service to the underserved: Implications for affirmative action in medical education. Inquiry, 33(2), 167–180. Dababnah, S., Shaia, W. E., Campion, K., & Nichols, H. M. (2018). ‘We had to keep pushing’: Caregivers’ perspectives on autism screening and referral practices of black children in primary care. Intellectual and Developmental Disabilities, 56(5), 321–336. https://doi.org/10.1352/19349556-56.5.321 Hooper, M. W., Mitchell, C., Marshall, V. J., Cheatham, C., Austin, K., Sanders, K., . . . Grafton, L. L. (2019). Understanding multilevel factors related to urban community trust in healthcare and research. International Journal of Environmental Research and Public Health, 16(18), 3280. https://doi.org/10.3390/ijerph16183280 INSAR Board of Directors and Cultural Diversity Committee. (2020). INSAR statements on discrimination and the black lives matter movement. https://www.autism-insar.org/page/ INSARstatement Jackson, C. S., & Nadine Gracia, J. (2014). Addressing health and health-care disparities: The role of a diverse workforce and the social determinants of health. Public Health Reports, 129(1, Suppl. 2), 57–61. https://doi.org/10.1177/0 0333549141291s211 Jang, J., Matson, J. L., Cervantes, P. E., & Konst, M. J. (2014). The relationship between ethnicity and age of first concern in toddlers with autism spectrum disorder. Research in Autism Spectrum Disorders, 8(7), 925–932. https://doi. org/10.1016/j.rasd.2014.04.003 Jarquin, V. G., Wiggins, L. D., Schieve, L. A., & Van NaardenBraun, K. (2011). Racial disparities in community identification of autism spectrum disorders over time; Metropolitan Atlanta, Georgia, 2000-2006. Journal of Developmental and Behavioral Pediatrics, 32(3), 179–187. https://doi. org/10.1097/DBP.0b013e31820b4260
1589 Komaromy, M., Grumbach, K., Drake, M., Vranizan, K., Lurie, N., Keane, D., & Bindman, A. B. (1996). The role of black and Hispanic physicians in providing health care for underserved populations. New England Journal of Medicine, 334(20), 1305–1310. https://doi.org/10.1056/ NEJM199605163342006 Laveist, T. A., & Nuru-Jeter, A. (2002). Is doctor-patient race concordance associated with greater satisfaction with care? Journal of Health and Social Behavior, 43(3), 296–306. https://doi.org/10.2307/3090205 Magaña, S., Parish, S. L., & Son, E. (2015). Have racial and ethnic disparities in the quality of health care relationships changed for children with developmental disabilities and ASD? American Journal on Intellectual and Developmental Disabilities, 120(6), 504–513. https://doi.org/10.1352/1944-7558-120.6.504 Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802. https://doi. org/10.1007/s10803-006-0314-8 Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., . . . Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498. https://doi.org/10.2105/ AJPH.2007.131243 Pearson, J. N., & Meadan, H. (2018). African American parents’ perceptions of diagnosis and services for children with autism. Education and Training in Autism and Developmental Disabilities, 53(1), 17–32. Sankaré, I. C., Bross, R., Brown, A. F., del Pino, H. E., Jones, L. F., Morris, D. M., . . . Kahn, K. L. (2015). Strategies to build trust and recruit African American and Latino community residents for health research: A cohort study. Clinical and Translational Science, 8(5), 412–420. https:// doi.org/10.1111/cts.12273 Shaia, W. E., Nichols, H. M., Dababnah, S., Campion, K., & Garbarino, N. (2020). Brief report: Participation of Black and African-American families in autism research. Journal of Autism and Developmental Disorders, 50, 1841–1846. https://doi.org/10.1007/s10803-019-03926-0 Taani, M. H., Zabler, B., Fendrich, M., & Schiffman, R. (2020). Lessons learned for recruitment and retention of lowincome African Americans. Contemporary Clinical Trials Communications, 17, 100533. https://doi.org/10.1016/j. conctc.2020.100533 West, E. A., Travers, J. C., Kemper, T. D., Liberty, L. M., Cote, D. L., McCollow, M. M., & Stansberry Brusnahan, L. L. (2016). Racial and ethnic diversity of participants in research supporting evidence-based practices for learners with autism spectrum disorder. Journal of Special Education, 50(3), 151–163. https://doi.org/10.1177/0022466916632495 Williams, D. R., Priest, N., & Anderson, N. B. (2016). Understanding associations among race, socioeconomic status, and health: Patterns and prospects. Health Psychology, 35(4), 407–411. https://doi.org/10.1037/hea0000242
Desiree R Jones1 and David S Mandell2 1 The University of Texas at Dallas, USA 2 University of Pennsylvania, USA
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