Eliminating Racial & Ethnic Differences in Autism Diagnosis

Tuesday, September 11, 2012 View Comments

Posted by Lizzie McManus, an Autism Speaks summer intern from the College of the Holy Cross, in Worcester, Mass.

I decided to apply for the summer internship with the Autism Speaks science team after learning about it through the Summer Internship Program at the College of the Holy Cross, which is also the alma mater of Autism Speaks co-founder Bob Wright. The word “disparity” in the project description caught my eye. I have a strong interest in the issue of disparities, or differences, in access to health care. Doing research on disparities in autism services sounded like a great opportunity to learn more about the topic. 

Once on board, I quickly learned about Autism Speaks initiatives like Move the Needle and Global Autism Public Health (GAPH). These programs focus on lowering the age of autism diagnosis and increasing access to services, especially in communities where services are scarce. But in order to accomplish these goals, the science team must better understand the different challenges to accessing autism services for children of different backgrounds.

For my summer project, I decided to review the research on the barriers to health care for minority children. The review will help guide Autism Speaks in supporting the types of studies that provide the most useful information on this subject. Throughout the summer, I read dozens of studies on challenges to getting health care in minority populations. Based on what I learned, I made recommendations that Autism Speaks can use to identify opportunities and guide future research.

What I found most disheartening was that the majority of these studies show that minority children face significant barriers to care and receive poor quality of care. Often there are no services at all in their communities. Research on differences in autism diagnosis showed how black, Hispanic and children of other non-white ethnicities  were less likely to be identified as having autism than white children. Another study showed poorer health care access and quality for Hispanic children with ASD compared to white children.

I also offered some recommendations for better research methods. For example, the authors of most of the studies acknowledged that we need more research that asks individuals of different cultures about their personal experiences with health care. This type of research can help us better understand different cultural perspectives on health issues. It can be achieved by using focus groups or asking open-ended questions, which tend to draw more detailed responses. I recommend this approach in future Autism Speaks projects to help gather more information about the personal experiences of families affected by autism.

My project will help Autism Speaks develop outreach to underserved populations and minority communities. With the help of my project’s recommendations, the science team can support research that will gather the most information about these groups.

Working with the science team this summer, especially with my knowledgeable mentors Amy Daniels, PhD, Michael Rosanoff, MPH, and Andy Shih, PhD, was an important experience that will prepare me for my education and career in public health. I also hope this project brings Autism Speaks a step closer to understanding racial and ethnic differences in autism diagnosis and access to services. 

Editor’s note: Autism Speaks is supporting a number of studies involving underserved populations  both in the United States and abroad. You can explore these and other Autism Speaks studies using our website’s grant search. Also, please see Autism Speaks GAPH and Move the Needle webpages.