Abstract
BACKGROUND: Autism Spectrum Disorder (ASD) contributes significantly to the disease burden among children and adolescents. Early diagnosis and intervention significantly improve outcomes; however, in Africa, children and adolescents with ASD are frequently identified and diagnosed late. This has been attributed to long and tortuous pathways to diagnosis. The objective of the study was to document and evaluate the pathways to a diagnosis of ASD, measure the delay in diagnosis, and document factors influencing these. METHODS: A cross-sectional survey of 70 caregivers of children aged 2-18 years with ASD. The Encounter Form, developed by the World Health Organisation, was used to describe pathways to diagnosis, and structured clinical interviews and assessments were used to determine how children's clinical factors, caregiver socio-demographic factors, and cultural and contextual factors influence the pathways and delays in diagnosis. ASD was diagnosed by a consultant psychiatrist or paediatrician using the Diagnostic and Statistical Manual version 5. SPSS version 23.0 was used for data analysis. Correlations between variables were analysed using Kruskal-Wallis, Mann-Whitney U tests, and logistic regression models. RESULTS: A mainstream (healthcare) and traditional/spiritual-based pathway was utilized by N = 51 (73%) and N = 19 (27%) caregivers, respectively. The mean age of diagnosis was five years, with a delay of 34.9 ± 33.5 months between caregiver symptom recognition and diagnosis. A median of four points of contact was made with care providers before diagnosis, with special needs teachers serving as the primary referral source. Clinical factors associated with a delay in diagnosis included: echolalia (p = 0.03), delayed walking (p = 0.01), attention deficit hyperactivity disorder (p = 0.04), and intellectual developmental disorder (p = 0.02). Conversely, challenges in recognizing, interpreting, and responding to emotional cues (p = 0.03) and "selectiveness in clothing" (p = 0.01) were associated with an earlier diagnosis. CONCLUSION: Despite early recognition of ASD symptoms by caregivers and the predominant use of mainstream healthcare-based pathways, diagnosis was often delayed in this Kenyan sample. Distinct factors associated with the delay in diagnosis were identified, and further research is needed in larger and more diverse groups to facilitate earlier diagnosis and intervention.