Stigma and knowledge about autism in Brazil: A psychometric and intervention study

Abstract

Researchers from Brazil reached out to a researcher in the United States to co-develop and evaluate the psychometric properties of a Brazilian version of an autism stigma (social distance) scale and a Participatory Autism Knowledge-Measure (Study 1) and to assess the impact of an online training on autism stigma and knowledge in a Brazilian sample (Study 2). In a psychometric study, 532 Brazilians completed the stigma (EARPA) while 510 completed the knowledge scale (ECAT). In Study 2, 79 Brazilians (mostly white, female university students) participated in a quasi-experimental training evaluation. Exploratory graph analysis revealed one cluster on the EARPA and four clusters on the ECAT (intervention, diagnosis and etiology; autism in adulthood; repetitive behaviors and restricted interests; and socio-communicative development). The training evaluation revealed improvements across most EARPA and ECAT items, as well as changes in all centrality indicators assessed through the network analysis, suggesting that autism stigma and knowledge improved with training. Both scales are promising instruments and may be useful in future Brazilian and cross-cultural studies. The training could be used more widely to improve autism understanding in Brazil. Further cultural adaptations will likely be needed to make the training well-suited to the myriad cultural contexts present within Brazil. Lay abstract To promote the full inclusion of autistic people, we must change the knowledge and attitudes of non-autistic individuals. Unfortunately, access to autism information and support remains limited in Brazil, and stigma is also common. Brazilian researchers reached out to a researcher in the United States to co-develop Brazilian surveys to measure autism stigma and knowledge. Together, they made Brazilian versions of stigma and knowledge surveys which autistic people in the United States had helped make. They also adapted an online autism training used in other countries with help from three Brazilian autistic people and the mother of an autistic child. They used the new measures to see if the autism training improved autism stigma and knowledge among Brazilians. The surveys, called EARPA and ECAT in Brazil, were translated into Portuguese in a previous study. In the first study in this article, 532 Brazilians completed the stigma measure and 510 completed the knowledge measure. The researchers used exploratory graph analysis, which uses the connections between items in a survey to understand which items belong together. Seventy-nine Brazilians participated in the training. They were mostly white, female university students. The EGA showed that the stigma survey measured one big idea while the knowledge survey measured four ideas: diagnosis/cause; socio-communicative development; stimming and special interests; and autism in adulthood. Both scales are promising and may be helpful in future Brazilian and cross-cultural studies about autism. Participants reported more knowledge and less stigma after the autism training, which has been found in other countries too.