Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries.
Latin-American autism families face long waits, high costs, and stigma, but money and queues trump shame in blocking services.
01Research in Context
What this study did
Viefhaus et al. (2020) asked 2,942 caregivers in six Latin-American countries what blocks good autism care. They used an online survey in Spanish and Portuguese. Families told them what help they need most and what gets in the way.
What they found
Half the families sat on waiting lists. One in three felt judged by neighbors. One in three also lost income. Top wishes: teach the public about autism and fix schools.
How this fits with other research
Rivera-Figueroa et al. (2025) asked US families the same questions. They found race matters less than money for getting services. Only Asian families said shame really kept them away. Together the two surveys show stigma hurts, but cash and waits hurt more.
Tait et al. (2016) saw the same long waits in Hong Kong. Same pain, new place. The problem crosses oceans.
Cohen et al. (2018) talked to Mexican parents in the US. They learned parents link autism to love, shots, and bad luck. Silvestre’s numbers now show those beliefs still shape stigma back home.
Why it matters
You can’t fix waits with a token board, but you can ease shame today. Start sessions by asking, "Have you felt judged this week?" Note the answer in the BSP. When you write goals, add parent respite as a collateral target. If the family waits months for diagnosis, give them simple visual tools now. Small moves lower stress while the big system crawls.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Ask every caregiver, "What has been hardest about getting help?" Write the answer in plain words at the top of the plan.
02At a glance
03Original abstract
Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child's autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels.
Autism : the international journal of research and practice, 2020 · doi:10.1177/1362361320940073