Searching for the 'Trigger': An ethnographic analysis of parental beliefs regarding autism causation and vaccination in Puerto Rico.

Researchers interviewed 35 Puerto Rican parents of autistic children about what they think causes autism. Most parents believed autism happens when a child with certain genes is exposed to something in the environment that 'triggers' it. Parents had different views about vaccines - some didn't think vaccines cause autism, some did, and others thought vaccines might be one possible trigger. No parents thought vaccines were always dangerous, but some worried they might trigger autism in children already at risk.

This ethnographic study examined beliefs about autism causation among 35 Puerto Rican parents of autistic children through interviews and 350+ hours of participant observation (2017-2019). Most parents (32/35) believed autism results from genetic predisposition triggered by environmental factors. While all parents discussed vaccination, views varied: 18 did not believe vaccines trigger autism, 3 attributed autism entirely to vaccines, and 14 considered vaccines one of several possible triggers. Notably, no parents viewed vaccines as universally harmful, but rather as potential triggers for genetically predisposed children.

These nuanced beliefs sometimes influenced opposition to mandatory vaccination policies and may have implications for COVID-19 vaccine acceptance in Puerto Rican autism communities.

Healthcare providers should understand that parental vaccine concerns may be nuanced rather than absolute. Communication strategies should acknowledge parental beliefs about genetic predisposition while providing evidence-based information. Culturally sensitive approaches may be needed for diverse autism communities, particularly regarding mandatory vaccination policies.

Small sample size from single geographic region limits generalizability. Ethnographic methodology provides rich qualitative data but cannot establish causal relationships. Self-reported beliefs may be subject to social desirability bias. Study does not examine actual vaccination behaviors, only stated beliefs and intentions.

This study examines the personal beliefs held by parents of autistic children in Puerto Rico regarding the cause of their child's autism and how these beliefs may influence parental vaccination decision-making. This study seeks to contribute towards diversifying the autism literature by focusing on an autism community living in a relatively lower income, resource-deficit context. These findings expand our understandings of how parents of autistic children may perceive vaccines and how these perceptions are informed by various sources of knowledge. This ethnographic research study was conducted between May 2017 and August 2019.

Methods included 350+ hours of participant-observation and semi-structured interviewing of 35 Puerto Rican parents of autistic children. 32 of these 35 parents interviewed believed autism to be the result of genetic risks that are 'triggered' by an unknown environmental factor. Suggested 'triggers' included various environmental contaminants and vaccinations. The subject of vaccination came up in every interview; 18 interviewed parents did not believe vaccines 'triggered' autism, 3 parents attributed their child's autism entirely to vaccines, while 14 considered vaccines to be one of several possible 'triggers'. It is important to note that no parents interviewed perceived vaccinations to be inherently or universally harmful.

Rather, they perceived vaccinations to be one of many possible 'triggers' for a child predisposed to develop autism. In some cases, this perception prompted parents to oppose mandatory vaccination policies on the island. Parents shared nuanced, complex understandings of autism causation that may carry implications for COVID-19 vaccine uptake within the Puerto Rican autistic community.