Journeys towards accessing an autism diagnosis and associated support: A survey of families of autistic children in Ecuador.
Paulina Buffle, Thalia Cavadini, María de Lourdes Ortega and 4 others
PMID 39340331WHAT IT FOUND
Families of autistic children in Ecuador face fragmented care, paying out of pocket for diagnosis and relying heavily on the internet for support.
They urgently need clear diagnostic pathways and evidence-based information. Clinicians must recognise that families are proactive but lack professional guidance and accessible services.
Key findings
01Most families paid for their child's autism diagnosis themselves, and relied on private practitioners rather than the national health system.
02Families identified a critical lack of trained professionals and accessible information as the primary barriers to post-diagnostic support.
03The internet and other families were the most common sources of information for parents after diagnosis, surpassing professional advice.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was heavily skewed towards urban families (93%), with only 6% from rural areas, despite rural populations making up 37% of Ecuador's national demographic. This limits the generalisability of findings to rural contexts. The study relied on self-reported data from parents, which may be subject to recall bias regarding the timing of concerns and the nature of professional interactions. The survey was anonymous and online, which may have excluded families with limited internet access or lower socioeconomic status, potentially underestimating the barriers faced by the most vulnerable groups. The study did not include autistic contributors or validate the children's diagnoses through clinical records, relying instead on parental perception of autism.
Declared interests
The authors declared no potential conflicts of interest. The study received financial support from the University of Geneva for publication.
The easy way to misread this
Do not assume that families' reliance on the internet indicates a lack of motivation or compliance. The data shows this reliance stems from a critical shortage of trained professionals and accessible, evidence-based information provided by the health system.