Resources for African Americans Coping with Autism

Dr. Carter G. Woodson founded Negro History Week, which was eventually expanded into a month-long observance. Photograph courtesy of the National Park Service via Wikimedia Commons.

This month, people in the United States, Canada, the United Kingdom and the Netherlands will acknowledge important figures and commemorate significant events in the history of people of African descent, as they celebrate African American History Month, Black History Month and Black Achievement Month, respectively. Since, as is the case with many other aspects of life, African Americans coping with Autism Spectrum Disorders (ASD) experience some unique challenges and disparities, African American History Month is an ideal time to share some information and resources that specifically address how ASD impacts the African American community.  

Some important recent studies provide insight into how autism affects African Americans. In “Autism and the African American Community,”1 Ruby M. Gourdine, Tiffany D. Baffour and Martell Teasley discussed a number of disparities in the diagnosis and treatment of autism among African Americans, including African American children being diagnosed with Autism Spectrum Disorder (ASD) an average of 1.5 years later and requiring up to 3 times the number of visits in order to receive a diagnosis than their Caucasian peers. They attribute these disparities to both historical inequalities, such as discrimination, and contemporary social problems that greatly impact the African American community, such as “higher unemployment rates, higher rates of uninsured families and lack of access to services due to geographical region.” 

Gourdine, Baffour and Teasley also underscored the harmful effects racial slights have on African Americans’ perceptions of themselves as capable caregivers. According to the authors, these microinsults can make African American caregivers feel “personally inadequate, incompetent and powerless in the helping process.”

In their 2012 article, “Racial and Ethnic Disparities in Quality of Health Care Among Children with Autism and Other Developmental Disabilities,”2 Sandra Magaña, Susan L. Parish, Roderick A. Rose, Maria Timberlake and Jamie G. Swaine, identified significant deficits in healthcare access, utilization and quality of care among African American children with autism as compared to children of other races with autism, as well as African American children who have other developmental disabilities. 

The authors’ analysis shows that families of Black children with autism were 64% more likely to report not having a personal physician and 53% more likely to report having a physician that does not spend enough time interacting with patients and their families than Black children who have other developmental disabilities. Among their major findings was the fact that African American children and adults with autism face “greater challenges securing adequate healthcare.”

They identified a combination of predisposing factors (parent education, family structure, race and ethnicity), enabling factors (family income, whether the child has insurance) and need factors (type of developmental disability, severity of disability) that contribute to disparities in quality of healthcare.
 

For more insight into how autism impacts African Americans,listen to Michel Martin’s National Public Radio interview , and view the PBS NewsHour report on the isolation and disparities of care African-Americans coping with autism face, featuring Debra Vines, founder of The Answer, Inc.

Information and resources for African-Americans affected by autism can be found by visiting the following Websites:

http://www.autisminblack.com/resources.html

http://www.child-autism-parent-cafe.com/

http://hatchinghope.org/index.html

https://jorysjourney.org/we-are-jorys-journey/

http://www.mochaautismnetwork.com/

http://www.naaacn.com/about-us/

http://snnla.org/

http://theanswerinc.org/

http://www.thecolorofautism.org/

¹Ruby M. Gourdine, Tiffany D. Baffour & Martell Teasley (2011): Autism and the African American Community, Social Work in Public Health, 26:4, 454-470.

²Sandra Magaña, Susan L. Parish, Roderick A. Rose, Maria Timberlake, and Jamie G. Swaine (2012) Racial and Ethnic Disparities in Quality of Health Care Among Children with Autism and Other Developmental Disabilities. Intellectual and Developmental Disabilities: August 2012, Vol. 50, No. 4, pp. 287-299.