Autism & Developmental

Mortality in autism: a prospective longitudinal community-based study.

Gillberg et al. (2010) · Journal of autism and developmental disorders 2010
★ The Verdict

Autistic youth diagnosed in childhood die five times faster than peers—mainly from epilepsy and accidents.

✓ Read this if BCBAs serving teens or adults with autism plus intellectual disability.
✗ Skip if Clinicians working only with high-functioning ASD clients who lack seizure history.

01Research in Context

01

What this study did

Gillberg et al. (2010) followed a whole county's autistic kids into adulthood. They counted who had died and why.

The team tracked every child who got an autism diagnosis in the 1980s. They waited 20-plus years to see who was still alive.

02

What they found

By age 30, about 1 in 13 had died. That rate is five to six times higher than in the general public.

Epilepsy and accidents were the top killers. Most who died also had intellectual disability.

03

How this fits with other research

Tsai et al. (2023) looked at all of Taiwan 13 years later. They found the same jump in deaths, plus a new one: suicide.

Akobirshoev et al. (2020) zoomed in on U.S. hospitals. Autistic adults there were 50% more likely to die during a stay, with women at highest risk.

Drasgow et al. (2016) saw fewer heart-disease records in the same cohort. The gap may mean doctors miss cardiac problems in autistic patients.

04

Why it matters

Your clients with autism and intellectual disability face real medical danger. Add epilepsy checks and safety skills to every care plan. Teach street-crossing, water safety, and medication adherence. Flag any seizure-like event for fast neurology referral. These simple steps can literally save lives.

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Add a seizure-safety protocol: train staff to spot signs, time events, and call 911 for any convulsion lasting over three minutes.

02At a glance

Intervention
not applicable
Design
other
Sample size
120
Population
autism spectrum disorder
Finding
not reported

03Original abstract

The purposes of the present study were to establish the mortality rate in a representative group of individuals (n = 120) born in the years 1962-1984, diagnosed with autism/atypical autism in childhood and followed up at young adult age (>or=18 years of age), and examine the risk factors and causes of death. The study group, which constituted a total population sample of children with these diagnoses, were followed up in Swedish registers. Nine (7.5%) of the 120 individuals with autism had died at the time of follow-up, a rate 5.6 times higher than expected. The mortality rate was significantly higher among the females. Associated medical disorders (including epilepsy with cognitive impairment) and accidents accounted for most of the deaths, and it was not possible to determine whether autism "per se" actually carries an increased mortality risk.

Journal of autism and developmental disorders, 2010 · doi:10.1007/s10803-009-0883-4