What happens to autistic people when they grow older?
Research type
Research Study
Full title
What happens to autistic people when they grow older? A follow-up of the Maudsley cohort of children diagnosed with autism in 1950s-70s\n
IRAS ID
275611
Contact name
Francesca Happe
Contact email
Sponsor organisation
King's College London
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
2 years, 6 months, 31 days
Research summary
A growing number of studies have reported on the outcomes of people diagnosed with autism spectrum disorders (ASD). The meaning of ‘outcome’ has changed over several decades. It referred to a clinician’s assessment that the autistic person was leading a “normal”, or “near-normal”, social life. Later researchers used different criteria, by rating the autistic person’s level of function in three domains: employment, independence, and relationships. Each participant can then be categorised as having a very good, good, fair, poor, or very poor outcome. Most of these studies report that between 50-60% of autistic people have poor, or very poor, outcomes. Some exceptions have been reported; one study reported that 83% of the autistic people had a fair or better outcome.\n\nThe severity of autism symptoms, IQ, and language are often reported to be significant predictors of outcome. However, not all studies find the same pattern of predictors, so it is a little unclear the exact relationship between these three variables and outcome. \n\nThis project will build on previous findings to report on the outcomes of a cohort of autistic people originally diagnosed in the 1950s, 1960s, and 1970s. This cohort has been followed up in previous research and so this project will add to knowledge about the trajectory of outcomes in older age (aged 55 and 75). Very few studies have recruited autistic people of this age; no studies have examined these important outcomes for this age range. This project will measure outcomes objectively (e.g. living status, employment, and friendships); subjectively (e.g. quality of life); and contextually (e.g. IQ/cognition, language ability). This project will examine alternative conceptualisations of outcome, such that objective and subjective factors are used to determine how “good” and autistic person’s outcome is.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
20/YH/0129
Date of REC Opinion
19 Jun 2020
REC opinion
Further Information Favourable Opinion