Mortality in 787,666 school pupils with and without autism: A cohort study

Area of Science:

• Pediatric Health
• Neurodevelopmental Disorders
• Public Health Surveillance

Background:

• Limited research exists on mortality rates in children and young people with autism spectrum disorder (ASD).
• Previous studies combining children and adults suggest potentially higher death rates for individuals with ASD.
• Changes in diagnostic criteria and increased diagnosis rates may impact the applicability of older studies to current pediatric populations with ASD.

Purpose of the Study:

• To investigate the mortality rates among children and young people diagnosed with autism in Scotland.
• To compare death rates between pupils with and without autism.
• To identify common causes of death in pediatric populations with autism.

Main Methods:

• Utilized data from Scotland's annual pupil census (2008-2015).
• Linked pupil data with the National Records of Scotland deaths register for mortality analysis.
• Calculated and compared death rates per 100,000 for pupils with and without autism.

Main Results:

• Out of 787,666 pupils, 9,754 (1.2%) had autism. Six pupils with autism died, versus 458 without autism.
• The death rate was 16 per 100,000 for pupils with autism and 13 per 100,000 for pupils without autism, indicating a similar rate.
• Leading causes of death in the autism group were nervous system diseases, including some preventable epilepsy-related deaths, while external causes predominated in the comparison group.

Conclusions:

• The mortality rate for the current generation of children and young people with autism in Scotland is not higher than for their peers without autism.
• Despite similar overall rates, certain deaths within the autism cohort, particularly those linked to epilepsy, may be preventable through enhanced care quality.
• This study highlights the need for high-quality care to potentially reduce preventable deaths in children and young people with autism, even in high-income settings.