By: Julia Malacoff
When Melissa Anderson-Chavarria started college, she thought she wanted to major in creative writing. But it was during one of her first anthropology classes that she fell in love with the discipline.
Now a fifth year DO/PhD student in the MSU College of Osteopathic Medicine with the ambition of becoming a physician anthropologist, Anderson-Chavarria has been awarded the inaugural Shari VanDelinder Endowed Fellowship from the Center for Research in Autism, Intellectual, and other Neurodevelopmental Disorders for her research on the autism community in Puerto Rico.
Overall, Anderson-Chavarria’s work looks at the experience of autism families and autism clinical providers on the island from an ethnographic perspective.
“I’m examining how they work together to navigate a complex and challenging medical and educational infrastructure to access the various autism resources and services their children and patients need—which unfortunately, are quite scarce.”
VanDelinder was passionate about people struggling with all forms of neurodevelopmental disabilities, so the fellowship’s support of Anderson-Chavarria’s research is especially fitting.
Her interest in and commitment to the neurodiverse community is longstanding. Her mother is a speech pathologist and therapist who works with children and adults with autism spectrum disorders and apraxia, and that’s how Anderson-Chavarria initially got involved. Growing up, she participated in the non-profit Best Buddies program, was an adaptive swim teacher and worked as a caregiver and camp counselor for neurodiverse kids.
“It's an awesome, vibrant, unique community,” Anderson-Chavarria said. “You can never be bored when you're researching autism spectrum disorders. There’s the saying, ‘If you know one person with autism, then you know one person with autism.’ Every experience is radically different, so it's a super exciting field to be a part of.”
When Anderson-Chavarria was narrowing down her PhD topic, she noted an increasing call for research examining global autism communities. Not unlike many other areas of research, there’s a hyperfocus on one kind of social experience of autism.
“That tends to be the experience in North American or European high socioeconomic, resource-rich communities,” Anderson-Chavarria said. “Because of that, we're missing out on a vast majority of autistic experiences, and we have a relatively microscopic view of a very macro, global-level experience.”
In terms of choosing a location for her research, Puerto Rico was a prime candidate for several reasons.
“It’s a relatively low-income, resource-deficient community in comparison to the United States. And it’s also the country that I’m from,” Anderson-Chavarria said. She was born in New Jersey, but moved back to Puerto Rico at age 9, and all of her family is still there today.
Puerto Rico has also faced obstacles in recent years: economic crisis, natural disasters with Hurricanes Irma and Maria, and political turmoil. Understanding how these events have impacted the Puerto Rican autism community may also provide learnings that can shed light on autism communities around the world that are dealing in similar social and structural contexts, Anderson-Chavarria said.
Anderson-Chavarria will defend her dissertation later this month. Pending IRB approval, she’ll be headed to Puerto Rico this summer to continue her research, which will primarily be funded by the Shari VanDelinder Endowed Fellowship.
“I’ll be looking at a specific topic within the autism community that has become increasingly relevant in our current climate, especially following COVID-19 crisis, which is examining parental vaccination decision-making.”
Moving beyond the pro-vaccination/anti-vaccination dichotomy and the debunked link between autism and vaccines, Anderson-Chavarria hopes to investigate the nuances of the vaccination decision-making process through interviews with parents and pediatricians.
“This could be highly relevant to thinking about COVID-19 vaccine rollout in particular,” Anderson-Chavarria added. After conducting her fieldwork, she’ll come back to MSU to continue medical school. Anderson-Chavarria also plans to convert her dissertation into a more accessible book format.
“I hope this work highlights the need to speak to autism communities and their locally-lived experiences,” Anderson-Chavarria said. “We need to value those voices and experiences in order to build not only our autism screening, diagnostics and therapeutic interventions, but also to influence the large-scale public policy decisions that impact this community, which for a series of different reasons, is quite marginalized and vulnerable with a relatively small voice.”
The ultimate goal, according to Anderson-Chavarria, is to make public policy changes that facilitate a structure that increases the health, happiness and quality of life for neurodiverse people.
“It's a vibrant community with so much to offer. But right now, there are so many structural barriers in place that make it really hard to live neurodiverse experiences in this neurotypical world.”