February is Black History month. We are proud to be a part of the Washington, D.C., community, which has a rich heritage of Black communities, culture and activism. Although cultural and racial experiences have not always been honored in autism research and practice, there is a growing amount of attention paid to how racial disparities can impact access to care and family experience.
In the past, research has suggested that Black children are often delayed in receiving a diagnosis of autism and are less likely to be diagnosed with autism than their White peers. Recent data from the CDC, however, shows that these gaps are beginning to close, particularly for young children. We are also continuing to learn more about what factors influence when children of different races receive a diagnosis of autism.
A recent study published by Serene Habayeb, Ph.D., of the Center for Autism Spectrum Disorders (CASD) research team suggested there are fewer Black children being diagnosed with autism in middle/late childhood (i.e., after age six) compared to White children. Additionally, when getting a diagnosis later in childhood, Black children showed relatively more autistic traits and lower cognitive skills, while White children showed relatively more emotional problems and higher cognitive abilities. The research also showed that older Black children, particularly those with higher IQs, less obvious autism symptoms and more emotional problems, might be less readily recognized as having autism. These findings may indicate that Black children and their families have greater difficulty accessing a specialty autism clinic. What this suggests is that racial disparities in early identification of autism may be diminishing but disparities may persist among children diagnosed later in
childhood and adolescence.
There is also an increasing push in the field of autism, led by Black psychologists, to recognize the impact of systemic discrimination and racism on access to care, and to begin addressing these barriers. A recent call to action on this topic identified that differences in how parents think and talk about autism, internalized provider biases, the lack of culturally appropriate tools and insurance and financial barriers all work together to limit access to care for Black children and families. The authors recommended amplifying Black voices in organizations, learning about our own and others’ cultural
identities, and working to address systems-level barriers to care. At CASD, we are working to learn and address issues of racism and are coordinating with other systems in the hospital to make our clinic more accessible.
This CHAT was written by Dr. Habayeb and Allison Ratto, Ph.D.
Profiles Celebrating Neurodiversity
This month, we are excited to highlight the work of Morénike Giwa Onaiwu. Ms. Onaiwu is an autistic woman who works as a disability rights advocate and higher educator. She was late-diagnosed with autism and is also the mother to both autistic and non-autistic children. Ms. Onaiwu is currently a Humanities Scholar at Rice University, and she has served as an invited speaker, consultant and advocate at the White House, the United Nations and in various political advocacy and research-funded work through the National Institutes of Health and other high-profile organizations.
Ms. Onaiwu has been involved in advocacy in a number of areas, including housing, HIV, and disability rights and autism. Her visibility and advocacy as a Black autistic women has highlighted the importance of neurodiversity and the ways in which disability intersects with other identities.
The Talk – Black, Autistic and Male: One Family's Experience
We would like to share an interview with a family of a college-bound autistic young adult and an accompanying reflection by Tawara Goode, director of the National Center for Cultural Competence and director of the Georgetown University Center for Excellence in Developmental Disabilities.
Watch the video.