Public Health, School, and Recreational Barriers That Parents Have to Face in Rosario, Argentina

Background: Research in the field of Autism Spectrum Disorder (ASD) is not vast in Argentina, and among the available investigations, very few consider parents perspectives. However, during consultations it is very common to hear about the issues that caregivers have to struggle with. Some of the most common complaints are related to complications accessing public health services, difficulties with schools, and the pediatricians’ responses when they first consulted about diagnostic concerns.

Objectives: To gather information about the barriers that parents of people with ASD have to face concerning public health, educational and recreational services. In addition, to identify the knowledge that pediatricians have regarding autism, and diagnostic tools.

Methods: Two exploratory studies were conducted in Rosario, Argentina. In the first one, 97 parents of people with ASD (ages between 22 and 56; 70.1% female, and 29.9% male) were consulted about the barriers they had to face regarding public health, schools, and leisure and recreational spaces. In the second one, 20 pediatricians (ages between 28 and 62; 85% male, and 15% female) were asked about the screening and diagnostic tools they know and/or they use in their practices, diagnostic criteria, causes, and characteristic symptoms of ASD.

Results: More than half of the parents had to go through some difficulties. Almost 60% stated that they had issues at some point: the main problem (over 50% of the cases) seems to be related to schools; the most significant findings after that were problems with hospitals and public health care centers (41.5%), issues with the public disability evaluation boards (22%), and conflicts at municipal recreational spaces (9.8%). Additionally, a low level of ASD-related-knowledge was found among pediatricians. Most of the consulted doctors (80%) were not familiar with the diagnostic criteria, and/or the screening and diagnostic assessments, and only 5% think an interconsultation is necessary in case of diagnostic suspicion.

Conclusions: As a first approach to the subject, it is possible to state that aside from the difficulties of raising a child with ASD, parents also have to overcome other barriers, including the lack of knowledge pediatricians have (that leads to wasting valuable time), and struggling with public health services and schools. Although the reaches of these studies are limited, and they should be replicated with more meaningful samples, the results allow us to consider the situation, and the need of public policies regarding autism.