Quality of Life in the Adult Autism Population in the UK

Background:

Previous research suggests Quality of Life (QoL) in autistic adults may be higher in males than in females, that QoL does not vary consistently with age, that QoL may be predicted by available support and having paid or voluntary employment, and that behavioural characteristics may be related to an individual’s QoL. As a multidimensional subjective construct, QoL is conceptualised as having different domains that represent different aspects of a person’s life, for instance, physical, psychological, or social QoL.

Objectives:

(1) To describe the QoL of adults on the autism spectrum in the UK and to compare it to that of the general population of adults. (2) To investigate what factors may predict QoL in adults on the autism spectrum.

Methods:

Participants are 370 autistic adults, and relatives/carers acting as ‘consultees’ for adults lacking capacity to consent for themselves to research participation, who are part of The Adult Autism Spectrum Cohort–UK (ASC-UK) (males=199, females=158, other gender=13; mean age=41.6 years, range=17–80; mean age at diagnosis=36.5 years, range=2-74). The ASC-UK enables longitudinal research aiming to investigate the life experiences of adults on the autism spectrum. Autistic adults were recruited through health teams, voluntary sector organisations, and the autism community. They completed a questionnaire about health and experiences, the Social Responsiveness Scale (a measure of autism severity), and the World Health Organisation Quality of Life questionnaire (WHOQoL-BREF). The WHOQOL-BREF consists of 26 questions that measure 4 domains: physical, psychological, social, and environment. Raw scores for each subscale were transformed into standardised scores from 0-100; higher scores indicate better QoL. Analyses on gender as well as age included male and female participants only. Age groupings were as follows: 16-25 years (n=62), 26-40 years (n=108), 41-60 years (n=149), and 61+ years (n=38).

Results:

Compared to the UK adult population, reported QoL was lower across all four domains of the WHOQoL-BREF for adults on the autism spectrum (effect sizes from 0.74 to 1.63). Males reported higher QoL than females in the physical domain (mean=52.6 vs 46.7) whereas females reported higher QoL than males in the social domain (mean=44.6 vs 38.4). Participants aged 16-25 years reported higher psychological QoL than participants aged 26-40 years (mean=48.8 vs 41.3). Participants aged 16-25 years reported higher environment QoL than participants aged 41-60 years (mean=60.4 vs 53.4). Being employed, receiving support, and being in a relationship positively predicted physical, social, and environmental QoL, respectively. In contrast, having a mental health condition and increased autism severity predicted lower QoL in each domain, and being female predicted lower physical, psychological, and environmental QoL.

Conclusions:

QoL is lower for adults on the autism spectrum than for the UK general population, with social QoL the lowest subscale. Contrary to some previous literature, an effect of age on QoL was found with younger participants reporting better QoL. In most domains, men fared better than women. There are several notable predictors of QoL, such as employment status and relationship status that could act as protective factors for autistic adults.