Annual Research Review: Achieving universal health coverage for young children with autism spectrum disorder in low‐ and middle‐income countries: a review of reviews

Abstract

Background Autism presents with similar prevalence and core impairments in diverse populations. We conducted a scoping review of reviews to determine key barriers and innovative strategies which can contribute to attaining universal health coverage (UHC), from early detection to effective interventions for autism in low‐ and middle‐income countries (LAMIC). Methods A systematic literature search of review articles was conducted. Reviews relevant to the study research question were included if they incorporated papers from LAMIC and focused on children (<eight years old) with autism or their caregivers. The database search was supplemented with bibliographic search of included articles and key informant suggestions. Data were extracted and mapped onto a Theory of Change model toward achieving UHC for autism in LAMIC. Results We identified 31 articles which reviewed data from over fifty countries across Africa, Latin America, Middle East, and Asia and addressed barriers across one or more of four inter‐related domains: (a) the social context and family experience for a child with autism; (b) barriers to detection and diagnosis; (c) access to appropriate evidence‐based intervention; and (d) social policy and legislation. Key barriers identified included: lack of appropriate tools for detection and diagnosis; low awareness and experienced stigma impacting demand for autism care; and the prevalence of specialist models for diagnosis and treatment which are not scalable in LAMIC. Conclusions We present a Theory of Change model which describe the strategies and resources needed to realize UHC for children with autism in LAMIC. We highlight the importance of harnessing existing evidence to best effect, using task sharing and adapted intervention strategies, community participation, and technology innovation. Scaling up these innovations will require open access to appropriate detection and intervention tools, systematic approaches to building and sustaining skills in frontline providers to support detection and deliver interventions embedded within a stepped care architecture, and community awareness of child development milestones.

“I was Confused … and Still am” Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study

“…The combination of increased awareness and scalable screening tools will enable flagging of children at risk for autism and their timely referral to child development specialists, while at the same time reducing the burden on this scarce resource. It will also allow us to move beyond using growth measures like height and weight as proxy for developmental attainment in early childhood and truly achieve developmental monitoring to ensure that every child with a diagnosis of autism thrives (Divan et al, 2021 ).…”

Early Autism Intervention Components Deliverable by Non-specialists in Low- and Middle-Income Countries: A Scoping Review

“…In the majority of LMIC, there exist a number of obstacles to accessing care which include the low awareness of the condition and the lack of access to detection and treatment services. Many LMIC have little or no policy implementation and underfunded health care systems for child and adolescent services ( 5 , 6 ). This results in a significant “detection” gap in the identification of autism in young children, as well as a “treatment gap” with a lack of evidence-based interventions for the children who do receive a diagnosis.…”

Perspectives of key stakeholders on educational experiences of children with autism spectrum disorders at the Kenyan Coast

“…Most ASD screening and diagnostic tools are not widely used in the SSA context. They are costly, time-consuming, and require some expertise and training to administer and interpret the data (Divan et al 2021 ). An additional complexity to diagnosing ASD in SSA is a medical model limiting diagnosis to few medical experts, such as psychiatrists and psychologists (Abubakar et al 2016a ).…”