Barriers to Autism Diagnosis and Treatment Access in Shaheed Benazirabad, Sindh: A Qualitative Study of Parental Experiences

Background: Autism spectrum disorder (ASD) is a neurodevelopmental condition associated with differences in social communication and restricted or repetitive behaviours. Early identification and timely intervention can improve developmental outcomes; however, access to autism diagnosis and treatment remains challenging, particularly in underserved settings. In Pakistan, limited specialist availability, financial constraints, geographical barriers, and inadequate rehabilitation services may delay diagnosis and continuity of care. This study explored parents’ experiences of barriers to autism diagnosis and treatment access in Shaheed Benazirabad, Sindh, Pakistan. Methods: A qualitative exploratory study was conducted among 12 parents of children diagnosed with ASD in Shaheed Benazirabad. Participants were purposively selected based on their experience of seeking autism-related diagnosis and treatment. Data were collected through face-to-face, semi-structured in-depth interviews conducted in Sindhi or Urdu. Interviews lasted approximately 40–60 minutes, were audio-recorded with consent, transcribed verbatim, and analysed using Braun and Clarke’s six-step thematic analysis approach with the support of NVivo software. Results: Five major themes were identified: (1) early identification and help-seeking, (2) barriers to autism diagnosis, (3) barriers to accessing autism treatment, (4) socioeconomic and geographic constraints, and (5) treatment-management challenges. Parents were commonly the first to recognize developmental differences, but limited awareness and expectations that developmental difficulties would resolve with age contributed to delayed help-seeking. Diagnostic barriers included limited availability of qualified specialists, delayed referrals, prolonged waiting periods, and parental concerns being initially minimized. Following diagnosis, parents reported limited availability and inconsistent provision of speech, occupational, behavioural, and other rehabilitation services. Treatment costs, transportation expenses, long distances, and concentration of specialist services in urban areas affected treatment continuity. Parents also described difficulties implementing therapeutic activities at home because of limited training, time constraints, and inadequate communication with therapists. Conclusions: Parents of children with ASD in Shaheed Benazirabad experience multiple and interconnected barriers across the pathway from early recognition to diagnosis and ongoing treatment. Improving autism care in underserved settings requires stronger early identification and referral mechanisms, greater availability of affordable and locally accessible rehabilitation services, and improved support for parents. Decentralized and community-based services, together with structured parent education and better communication between families and healthcare professionals, may improve continuity and accessibility of autism care.