Perceived Stigma and Barriers to Accessing Services: Experience of Caregivers of Autistic Children Residing in Latin America.
In Latin America, every extra barrier families hit while trying to get autism services measurably increases the stigma they feel—fix the system to reduce stigma.
01Research in Context
What this study did
Montenegro et al. (2022) asked caregivers of autistic children across Latin America to fill out a survey. They wanted to know if trouble getting services made parents feel more judged by others.
The team also looked at extra stressors like the child’s gender, level of challenging behavior, and how frustrated the parent felt.
What they found
Every extra barrier families hit while trying to get help raised the shame they felt. Country, caregiver frustration, child gender, and challenging behavior all added to the stigma load.
In plain words: the harder the system is to use, the more families blame themselves.
How this fits with other research
Onovbiona et al. (2024) found the same link in Black U.S. families. More racial and logistical barriers meant more stress and lower trust in services. The pattern crosses borders.
Čolić et al. (2022) review shows Black caregivers face racism at every step, from diagnosis to daily therapy. Their narrative fits Cecilia’s numbers: discrimination is a barrier that breeds stigma.
Wang et al. (2021) looked at U.S. adults with IDD. Black and Latinx adults cited distrust and not knowing where to go as top barriers, while White adults mostly worried about cost and travel. Same barrier theme, different age group.
Viljoen et al. (2019) compared Sweden and South Africa. They saw few differences in environmental barriers, but they did not measure stigma. Cecilia’s work adds the missing emotional piece.
Why it matters
If you work with Latino families, know that long waitlists, lost paperwork, or rude front-desk staff do more than delay therapy—they make parents feel judged. Cut one barrier and you cut stigma. Offer clear maps to services, warm hand-offs, and Spanish materials. Ask, “What has been hardest about getting help?” Then fix that step first.
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02At a glance
03Original abstract
BACKGROUND: Relationship of perceived stigma and barrier to service access among Latino populations with autism in cross-cultural settings has not been fully explored. AIM: The present study explored the relationship between difficulty accessing services and perceived stigma among caregivers of autistic children in Latin America. Additionally, explore contextual factors that better explain the perception of stigma when accessing services. METHODS AND PROCEDURE: Approximately 2500 caregivers from six Latin American countries completed an online survey. Descriptive inferential analysis and a pointbiserial correlation were conducted to understand direct relationship between difficulty accessing services and perceived stigma and to test their relationship. Added contextual factors contributing to this relationship were examined through a binary logistic regression. OUTCOMES AND RESULTS: Barriers to accessing services predicted stigma. Contextual factors such as country of residence, frustration experienced by caregivers, gender of autistic child and challenging behaviours had higher odds of experiencing some form of perceived stigma. CONCLUSIONS AND IMPLICATIONS: These results suggest experiences with stigma to be heavily influenced by environmental factors such cultural differences which in combination with contextual factors could further increase the likelihood of perceiving stigma. When observing stigma within a social-cognitive approach, it is possible that a strong-held adherence to cultural norms, in addition to negative experiences (e.g., frustration) when accessing services, could be influencing caregivers perceived stigma.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2021.104123