Exploring the Impact of Clinical Diagnosis on Health and Education Outcomes for Children Receiving Special Educational Needs support for Autism

Lead Research Organisation: University of Liverpool
Department Name: Public Health Policy & Systems

Abstract

Autism, or Autistic Spectrum Disorder (ASD), is a lifelong developmental disability which affects how people communicate and interact with the world. It affects around 3% of children. Children with ASD experience cognitive, sensory, and social challenges, including in schools. They face adverse health and education outcomes, such as an increased risk of cognitive development delays, motor skill challenges, anxiety, and school absence and exclusion. The lifetime cost of supporting an individual with ASD in the UK was £0.92 million in 2011, whilst annual special education and health-related costs for 4-17-year-olds with ASD were £14,006 and £890.

Clinical assessments for ASD are typically conducted within Child and Adolescent Mental Health Services (CAMHS), and a formal diagnosis is a crucial step toward accessing tailored support and services addressing the unique challenges of ASD. Although there is some opportunity for additional support in schools without a clinical diagnosis, many children with autism are not getting the full support they need. There is a significant challenge within the current clinical system for assessing ASD. Waiting times for assessments have surpassed 5 years in some regions, creating an unmanageable backlog. This crisis necessitates immediate action to ensure timely support for children in both health and education settings.

To address this pressing issue, this project will generate new knowledge about the impact of clinical diagnosis of ASD upon inequalities in health and education outcomes for children in England. This knowledge will enable health and education services to identify opportunities to intervene to mitigate inequalities. I will analyse data from Education and Child Health Insights from Linked Data (ECHILD). ECHILD joins together health, education and social care information for all children in England and provides a detailed picture of outcomes. The project will draw upon diverse disciplines such as public health, data science, and geography to explore health and educational outcomes for autistic children, considering the broader context of service shortages in clinical assessments.

The primary goal is to investigate whether obtaining a diagnosis from a clinical setting offers additional advantages to children identified solely in an educational setting with ASD, who may require extra support. This exploration aims to enhance our understanding of which children would benefit most from clinical diagnoses. The insights gained could be applied to prioritising children on waiting lists, introducing fair and programmable practices into health systems. The benefit is that the needs of children could be better matched by the services that support them.

The project's practical relevance lies in directly addressing challenges related to underdiagnosis and the crisis in clinical services. It strives to promote equal care for children, particularly those from disadvantaged backgrounds who may face exacerbated disadvantages if their ASD is not identified and addressed. I am committed to working closely with key stakeholders, including members of education and health services supporting autistic children, as well as involving members of the ASD community.

The potential impact of this project is substantial, with the capacity to bring about tangible education and health benefits and create meaningful impact. It addresses the crisis currently faced by frontline practitioners, policymakers, and other stakeholders striving to support autistic children. The proposal aligns with the objectives of fostering engagement and community building in administrative data research, emphasising a dedication to making a positive difference in the lives of autistic children and their families.

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