Cultivating Diverse Voices to Create Meaningful Research

There is a diversity problem in autism research. Much of autism research has been conducted with white, upper-middle income families living in North America and Northern Europe. Until recently, the perspectives and opinions of autistic individuals have rarely been included in the autism research agenda or within research study design. This approach has provided only a fragment of the story of autism. This is a problem because autism exists across all races/ethnicities, and affects people regardless of age, socioeconomic status, and nationality.

The Duke Center for Autism and Brain Development has a long-standing commitment to neurodiversity, and the center includes autistic individuals as part of its research team and across its many stakeholder partners. The center is committed to positively influencing neurodiversity policy and practice at Duke University at all levels, including faculty training, student support, accommodations, and employment and hiring. Center faculty and staff have worked collaboratively with neurodiverse students to understand how best to partner to identify needs and to raise awareness and acceptance on campus and in the broader community. In alignment with the Duke University Moments to Movement Initiative, the center created its Task Force for Racial Equity, which sponsored internal efforts and professional development opportunities for staff, faculty and students throughout the year.

“We strive to build a community of researchers, staff and students who are as diverse as the communities we serve,” said Duke Center for Autism Director Geraldine Dawson, Ph.D. “We believe that great science happens when diverse talents, experiences, perspectives, and cultures are welcomed and celebrated.”

The center has recognized the key role of community partnerships from the earliest phase of the research cycle, which starts with defining research priorities. This year, the center established the Community Engagement Advisory Board which meets quarterly, with the purpose of creating strong, two-way, open dialogue among and between board members, sharing preliminary research findings, and inviting conversations focused on the needs and gaps in research and resources for the autism community. Board members include self-advocates and other key stakeholders and leaders in the disability field in the broader North Carolina community in the areas of education, health care, government, policy, and advocacy.

“We recognize that in order to create equitable access to services and supports that positively impact quality of life for autistic people and their families, it is imperative that we ensure autism research is inclusive of diverse voices, perspectives, and lived experiences,” said Lauren Franz, M.B.Ch.B., M.P.H., a child and adolescent psychiatrist at the Duke Center for Autism.

The center has shown its commitment to equal and open access for all, especially those that are historically under-represented in autism research. Collaborating with the Duke Clinical and Translational Science Institute Equity in Research Core, the center has enhanced study consent form language to substantially improve transparency and inclusion. The center partners with community primary care clinics who serve diverse and low-resource populations, offers materials and assessments in Spanish, provides flexible options for diagnostic evaluations, and offers telehealth treatment to better reach its rural communities. Additionally, the center strives to use materials and messages that reflect the diverse autism community.

“We have a long way to go, but we are committed to this important process,” said Tara Chandrasekhar, M.D., Duke Center for Autism child and adolescent psychiatrist and co-chair of the Duke University initiative, Neurodiversity Connections. “We envision a world that moves from acceptance of neurodiversities to one that celebrates the unique differences in all of us.”