A Q&A with Autistic Autism Researchers at the Duke Center for Autism

Until now, only a few autism researchers have been openly autistic. Fortunately, this is changing as a growing number of self-advocates speak out in the field of scientific research. The Duke Center for Autism includes several neurodiverse researchers, staff, and faculty members working across multiple research and leadership teams, and supports a neurodiverse approach to hiring practices, clinical service delivery, and research protocols. This year, the center formed a new internal working group, the Duke Center for Autism Neurodiversity Initiatives Working Group, led by Sam Brandsen, PhD, a postdoctoral associate, and Jordan Grapel, MS, a research interventionist. The committee has led projects to support a more neurodiverse approach to grant writing, research design, clinical services delivery, and communications efforts. Brandsen and Grapel, who assist with autism research studies at the center, share how their autistic identity has impacted their research and their approach to their work.

What is your role at the center? What research projects do you currently have underway?

Brandsen: My role at the center is to support initiatives that improve quality of life for autistic people. One of the research projects that I am especially excited about focuses on healthcare trajectories in autistic adolescents. Many medical and mental health conditions frequently co-occur with autism, and our goal is to improve the quality of medical care for autistic adolescents by creating personalized healthcare predictions. Another research project aims to create a more neurodiversity-affirming screening tool to identify autism in adults. Ideally, this project will allow us better understand diagnostic disparities in adult autism diagnosis so we can find ways to reach underserved populations.

Grapel: I primarily work on studies in which we use electroencephalogram (EEG) and eye tracking to better assess changes in social development of autistic children. I am also a founding member of the center’s Neurodiversity Initiatives Working Group. Our focus is on making the lab a more accommodating place for autistic people. This includes working with other groups in the Duke community to improve how we design our studies, clinical practices, and other programs to take into account things that could be challenging for autistic people and their families.

What led you to pursue autism research?

Brandsen: As I began to meet more and more autistic children and autistic adults, a pattern emerged very quickly. The overwhelming majority had experienced significant isolation or stigma throughout their lives. Many people had stressful experiences with the school system. Likewise, many people had difficulty accessing autism-inclusive healthcare (including therapy or mental healthcare). Hearing these stories gave me a lot of motivation to want to improve quality of life for autistic people. I am excited about the possibility of using research to make the world a little more accessible and less isolating for autistic people. I wanted to pursue research that leaves educators and clinicians better equipped to meet the needs of their autistic students and patients.

Grapel: When I was a child, I had a very difficult time making friends. When I was told I was on the autism spectrum, it felt like my life finallymade sense. It did not make my problems go away, but at least I understood them better. As I’ve gotten older, I have come to see that my challenges come not only from being autistic, but also from how the world treats people with autism. This society I was born into was not built for people like me, so I got into autism research to find ways to change that.

How has your autistic identity affected/impacted your research and your approach to your work at the center?

Brandsen: I think it has given me a certain amount of understanding of the barriers that autistic people often face in society. Likewise, being a parent of an autistic child with higher support needs has changed my perception of early intervention. I think there can be immense joy in having an autistic child (or any child, of course!), and I would love to see a shift in early intervention to focus less on making children “more typical” and to helping children thrive in all of their uniqueness. It has also made me very eager to seek out the perspectives of other autistic people, especially groups that are typically under-represented and autistic people with higher support needs.

Grapel:  Being autistic gives me a unique perspective that many others in the field do not possess. I have been a researcher and care provider, but I have also been the one receiving care. I have an understanding of where our institutions and society need improvements in how they treat persons with autism. This has allowed me to think about our research more in terms of what would actually improve the lives of the people we are treating, rather than just changing their behavior to be less disruptive to the non-autistic community.