NEEDS, Quality of Life and Stigma of Families of Persons with ASD in Peru. Implementation of the LATIN American Autism Spectrum Network Caregiver NEEDS Survey.

Background: ASD knowledge, services and research infrastructure in Latin America are limited and unevenly distributed. In Peru there are no epidemiological data on ASD nor accurate data on health and educational services for people with ASD and their families. This research collects data from Peruvian families to meet their needs, their quality of life and if they have suffered stigma from diagnosis of ASD. In 2015, researchers from Argentina, Brazil, Chile, Uruguay, Venezuela and Dominican Republic constituted the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica – REAL) in order to conduct international research collaborations related to ASD. The first project undertaken by REAL was the translation, adaptation and implementation of the AS Caregiver Needs Survey. The AS Caregiver Needs Survey was developed by Autism Speaks to assess the needs of families affected by autism in partner countries of its Global Autism Public Health Initiative.

Objectives: To provide a comprehensive picture of the major needs and challenges faced by families affected by ASD in Peru with the purpose of successfully enhancing awareness, improving services, and developing long-term policy solutions related to ASD. Peru data will be compared with data obtained by Latin American countries belonging to the REAL Network (2016). Identify the characteristics of the diagnostic process regarding alerted symptoms, diagnosis time, professionals involved, distance had to travel to get the diagnosis in Peru. Knowing the perceptions of caregivers regarding: Needs; Impact of diagnostic and/or therapeutic processes in the family; Stigma associated with a diagnosis of autism; Quality of life of the family and the person with ASD; Challenges related to parenting/care of a person with autism; Initial diagnosis and/or difficult to obtain

Methods: The Caregiver Needs Survey will be broadly disseminated via social networks in Peru during a period of 4 months (November 2016-February 2017) so that caregivers can complete it online, either assisted by a clinician or not. The survey solicits information about family demographics, affected individual characteristics, service encounters and parent/caregiver perceptions, including stigma. It is estimated that more than 300 surveys will be completed in total. After the collection of completed surveys, REAL researchers will proceed to data cleaning and data analysis, and will draft a country report. Peruvian data will be compared with other Latin American countries.

Results: A summary of the results from the Caregiver Needs Survey in Peru will be presented, and regional similarities and differences will be analyzed.

Conclusions: The assessment of needs and challenges faced by families affected by ASD in Peru is essential for the identification of knowledge gaps, service needs, and stigma. It is also important in the development of culturally relevant strategies for raising autism awareness, guiding the implementation of successful and improved ASD clinical and educational services at the national and regional levels and setting priorities for future national and regional research collaborative efforts. In this era of globalization, REAL is an attempt to generate a collaborative workforce in order to readily identify the best ways to approach issues related to ASD in Latin America.