Education choices for children with Autism spectrum disorder in a clinical setting: Facilitators and barriers

Abstract

Autism Spectrum Disorder (ASD) is increasingly being diagnosed in low income countries. The global mean prevalence of 62/10 000 which translates into one child out of 160 with ASD. Unlike children with ASD in high income countries who are privileged to have several options for placement within the education system, those in low income countries tend to have limited access to appropriate structures and standardization of the education system. A Uganda Bureau of Statistics report of 2016 reported that only 2% of children in Uganda with ASD were in school, however the choices of school and barriers and facilitators were not described. This study therefore, aimed to study the facilitators and barriers to choice of education placement among children with ASD. Objective: To determine the type of school and facilitators and barriers that influence the choice of education placement for children diagnosed with ASD attending Bbosa Clinic in Mulago National Referral Hospital and Butabika National Referral Hospital. Methods: This was a descriptive mixed methods cross-sectional study. For quantitative data, consecutive sampling of primary caretakers of school going age children of 6 to 18 years was done, and interviewed using a pre tested semi structured questionnaire after an informed consent. Data was analyzed at Univariate and descriptive analysis with cross tabulations were run, For qualitative data, purposive sampling was done. Four focus group discussions with primary caretakers, and key informant interviews were conducted among key stake holders of education of children with ASD. Content thematic approach was used to explore the facilitators and barriers to choice of educational placement. Results Forty five primary care takers of children with a definitive diagnosis of autism were recruited in the study. The median age of the caretaker was 34 (IQR: 30-36) years with almost half being youth 20 (44.4%) between the age of 25 and 34 years. Female were more than the males, 30 (66.7%). The overall proportion of children diagnosed with ASD attending school was 87%, while only 13% were not in school. At time of diagnosis only 45% were attending school, while 55% were not in school at time of diagnosis. Among the 47 children, almost half were attending Private inclusive schools 19(40.4%), while 10(21.3%) were attending public inclusive schools. 10 (21.3%) of the children were attending specialized schools. Six (12.8%) of the children were not in school. School proximity, affordability of services and availability of a range of services, were the common resonated facilitators. While understanding of autism was identified as both a facilitator and barrier. The other barriers that were expressed include: inadequate training of teachers, stigma and limited financial resources. Conclusion In conclusion, we found that 87% of children diagnosed with autism were enrolled in school which is much higher than that reported by Uganda Demographic and Health Survey (UDHS) -2016. The high education status of majority of the caretakers may have contributed to the high percentage of school enrollment. Children with mild level of autism were mainly enrolled in inclusive schools. Close proximity, financial stability and availability of services were enlisted as major facilitators to choice of education placement. While limited knowledge and understanding of autism by both the teachers and caretakers were highlighted as barriers.