Increasing Diversity in Neuroscience and Autism Research

It is well-known that racial/ethnic disparities exist in both health status and health care in the United States. In the realm of autism, research suggests that White children are often diagnosed earlier and receive more services than Latino children. This is troubling given that early intervention has been shown to improve outcomes. In trying to learn more about why such disparities exist and how to close these gaps, researchers should make sure that study participants include individuals from underrepresented backgrounds.

Unfortunately, one barrier to learning more about the above-mentioned issues is low levels of participation from underrepresented racial/ethnic groups in research. That is, individuals from groups who are considered underrepresented (e.g. African American/Black, Latino/Hispanic, Native American/American Indian) are less likely to participate in research than individuals from groups who are not considered underrepresented (e.g. Caucasian/White).

Our Study

We recently published a study about the use of a social story on both parent understanding of research procedures and likelihood of participation. Our participants were parents of children with ASD. For those who are unfamiliar with social stories, they are narratives (often written in the first person) designed to help children with ASD or other neurodevelopmental disabilities to engage in positive/desired behaviors.

For example, if a child named Brenda is struggling to remain seated in class, tends to blurt out questions without raising her hand, and has trouble working quietly, a social story would say something like:

When I go to class I need to:

Remain seated while the teacher is talking.

Raise my hand if I have a question.

Work quietly during work time.

When I remember to do all of these things, my teacher is happy with me, and I can earn stickers!

I like class!

Social stories also use pictures along with the words (e.g. a cartoon image of a child smiling and raising her hand would be next to the sentence about raising one's hand).

What Did We Do?

For our study, we wondered whether using a social story would help parents feel more comfortable with neuroscience research, as it is often intimidating for parents to be asked whether their child is able to participate in a study to measure brain activity. We created a social story depicting each step of a visit to our lab, with corresponding images to go along with each step. The story was written from a child's perspective (e.g. "Now the scientist puts a funny hat on my head. It fits perfectly!"), and in child-friendly language.

Participants accessed the study online, and were shown either the social story or a written description of study procedures (which are similar to spoken explanations that we use during the parental consent process).

Both the social story and written description were translated into Spanish, so participants could complete the study in either English or Spanish.

We wanted to answer three questions:

1. Does seeing a social story help parents better understand neuroscience study procedures compared to the more traditional written description?
2. Does seeing a social story (versus a written description) increase parents likelihood of participating in neuroscience research?
3. Do results from questions 1 or 2 differ for English-speaking and Spanish-speaking parents?

Our Results

Two important things were observed:

1. Both English- and Spanish-speaking parents who viewed the social story had better understanding of study procedures compared to parents who read the written description. In particular, Spanish-speaking parents reported more perceived understanding of study procedures after viewing the social story (e.g. Spanish-speaking parents felt as though their understanding of study procedures was higher after viewing the social story compared to the written description).
2. Parents who saw the social story were less likely to indicate the need for more information about the study prior to being willing to participate compared to those who read a description.

Why Is This Important?

Our results have interesting implications for how to increase participation of underrepresented families in research. Our first finding suggests that all participants benefited from viewing the social story compared to reading a more traditional written description.

However, Spanish-speaking parents in particular reported more perceived understanding of study procedures after viewing the social story. This is important because parents are ultimately the ones deciding whether children will come to the lab or not. If parents feel as though their understanding of study procedures is more complete, it might increase trust in research and therefore encourage participation.

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Another exciting finding was that participants were more knowledgeable about study procedures after viewing the social story compared to the written description. This might change how we recruit all participants for neuroscience research. For example, our lab currently calls interested families and explains study procedures to them (in a way quite similar to the written description). However, these results suggest that it might be better to call families and ask if they would like us to email them a copy of the social story rather than simply describing procedures. The social story itself might do a better job of explaining the study procedures than our verbal description, which will increase parents' understanding of what they and their child will do if they come in to the lab.

Finally, we found that parents who saw the social story were less likely to say that they needed more information about the research study before agreeing to participate. In fact, parents who viewed the social story were more likely to mention barriers to participation that our research team would ask about on a phone call (e.g. parents who viewed the social story were likely to write, "my child would not tolerate having a cap on his head and therefore we would not be able to participate," whereas parents who read the written description were more likely to write, "I need more information about the study before I would agree to participate"). This is important, because it further underscores that parents who viewed the social story had a more complete understanding of study procedures—and therefore potential barriers to participation—than parents who read the written description.

Where Do We Go From Here?

Overall, researchers need to be more proactive about making sure that families from underrepresented backgrounds are represented in research. We plan to take the results from this study and make practical changes in our recruitment procedures. For example, we are going to begin sending the social story to parents who indicate willingness to learn more about our research. That way, parents will be more informed about our research procedures prior to making a decision about whether or not to bring their children in to the lab.

We hope that these changes will increase participant diversity so that our research can contribute to closing the disparity gap in identification and service provision for children with ASD.