2022 New Investigators Research Grant recipent: Determining the Role of Social Determinants of Health in Young Adulthood Outcomes of Autistic Black, Indigenous, and People of Color With Language Impairment
What originally sparked your interest in your research?
It’s really a two-part answer. The first part is language.
As an undergrad at Kenyon College, I worked as a Chinese teaching assistant, running drill classes several days a week, all in Chinese. Students who spoke English as a first language attended lectures in the morning and drill classes at night to practice and reinforce new content. What fascinated me was how they learned a language that differs from English in many ways. I started noticing error patterns and asked myself: what’s happening at a syntactic level, and how do we support learners? That curiosity led to an independent study class on syntax and pulled me into language.
The second part came later, when I taught in New York City at the largest public school serving students with autism. Many used little or no spoken language and often did not have communication supports in place across all settings. For example, school staff and families might know how to communicate with an autistic student with a language disorder, but not everyone in the community has that knowledge. Families and educators were doing everything they could, and they shared how everyday settings could be improved to support communication. That made me think about social determinants of health and how much they shape communication access.
Those two threads, language and equity, eventually led me to pursue a PhD at the University of Kansas, where I connected with mentors who helped shape my research path.
What problem are you hoping your work will solve? How could this potentially affect clinicians and/or consumers?
In the short term, I hope my work helps change the science. Autism research often focuses on individual differences, like language skills, and how those predict outcomes in adulthood. Those traits are easier to measure, but just as important is the environment: the systems, contexts, and supports that shape communication outcomes.
I don’t think it is one or the other. We need both. Reports show we lack models that account for contextual factors, especially as kids move into adulthood. At the same time, studies on social determinants of health sometimes overlook language, even though language in autism varies widely and plays an important role in shaping long-term outcomes. My goal is to bring these pieces together to model outcomes.
In the long term, the goal is intervention. High-quality speech-language services are important, but they are not enough. We also need community-based supports so that, for example, if an autistic young adult uses Augmentative and Alternative Communication (AAC), people in their neighborhood or workplace know how to communicate with them. That takes training, collaboration, and listening to the needs of autistic individuals and families.
Thanks to my ASHFoundation research grant, we have already seen that autistic young people and families know what they need and want. By reframing communication and service delivery outcomes not as just socioeconomic status or family background, but as part of larger systemic issues, I hope this work leads to better supports, stronger advocacy, and lasting change at the level of clinical practice and policy.
How are you approaching this work? In what ways is your approach to this work innovative?
For me, the starting point is research, but my research has always grown out of relationships. Back in 2015, during my PhD program, I began connecting with community organizations that serve autistic individuals. I also spoke with clinicians, educators, parents, and autistic individuals themselves.
It didn’t start as research. I showed up to help however I could, such as offering to set up chairs for events. Over time, people began asking me about my work. That is when I started turning their real-world experiences into the foundation of my studies, asking: can I map what matters to you and your community onto research in a way that is meaningful?
With my ASHFoundation research grant, for example, I recruited adolescents and young adults who primarily used spoken language and gave them standardized language assessments along with interviews and questionnaires. This let me measure not just language skills in a way that aligned with clinical practice patterns, but also person-centered perspectives on environmental factors in communication: service delivery needs, barriers to care, sense of community, and self-determination.
What makes this work innovative is twofold. First, I take a detailed approach to characterizing language instead of only using broad categories like “language impairment” or “minimally speaking.” Much of autism research focuses on these categories, but we need to understand linguistic variation to plan supports. Second, I integrate social determinants of health. That means acknowledging what clinicians, people, and families are doing well and also the factors beyond their control. This shift leads to a different yet necessary conversation.
What specific obstacles were there in getting this research started? How has ASHFoundation funding been instrumental in launching this research?
One of the biggest obstacles, especially early in my career, was time management. Building true community partnerships takes energy, and I wanted them to be driven by community priorities. But, investing that time does not always lead to the expected academic products, per typical faculty duties, like papers or research grants. With only so many hours in the day, finding that balance was a real challenge.
ASHFoundation funding changed that. It gave me resources to honor those partnerships by compensating participants, families, and community partners, and by building capacity with them as collaborators. It also gave me the feasibility data I needed to secure my first NIH R21 and several smaller awards, while opening doors to collaborating with world-class research teams.
Most importantly, it allowed me to sustain partnerships that make the research meaningful. It ensured that community priorities and academic research goals could both be addressed. Without ASHFoundation, I could not have built the foundation for the work I am doing today.
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