32002
Comparison of Characteristics of Autistic Adults between Different Age Groups across the Lifecourse in a UK-Wide Adult Autism Spectrum Cohort Study
The lived experience of autistic adults during adulthood is poorly understood. The ASC-UK cohort study aims to recruit a sufficiently large group of participants to investigate how the skills and needs of autistic people change across the lifespan.
Objectives:
To compare the characteristics (demographics, autism symptomatology, rates of mental and physical health diagnoses, and everyday experiences) of autistic adults from different age groups.
Methods:
Participants were recruited through health teams, voluntary sector organisations, and the autism community. All participants reported a clinical diagnosis of autism spectrum condition. Adults either gave informed consent or a relative/carer acted as ‘consultee’ (for those who lacked capacity to consent for themselves). All completed a registration questionnaire and Social Responsiveness Scale-2 (SRS-2).
Results:
1663 participants from four age groups (n=430, 16-25 years; n=576, 26-40 years; n=522, 41-60 years; and n=104, 61+ years) joined ASC-UK between 2015 and 2018 (45 months): 893 males, 729 females, 41 ‘other’ gender/preferred not to report/not reported; mean age 37.6 years, SD 14.0, range 16-88). 1397 had capacity to consent for themselves; 113 adults lacked capacity. Mean total SRS-2 score was 111.9 (SD 28.9). Approximately 60% of participants reported having both a diagnosed mental and physical health condition.
Rates of anxiety (43-55%) and depression (37-55%) were high across all age groups. Rates of anxiety did not differ by age; however, people in the youngest (16-25 years) and oldest (61+ years) groups reported lower rates of depression (37% and 43%, respectively) compared to those aged 26-60 years (50-55%). The rates of successfully accessing mental health services (57-62%) did not differ across age groups. However, people aged 26-40 years had tried to access mental health services more frequently (78%) than 16-25 year olds (65%). The proportional difference between people trying to access services and successfully accessing services was lowest for 16-25 year olds and highest for people aged 26-40, suggesting greater unmet need in this latter age group.
Sleep problems were common across all age groups (22-29%). 12-34% of all adults experienced gastrointestinal disorders (e.g., constipation, acid reflux; higher in adults aged 41+). Obesity was reported more frequently in adults aged 26-40 (13%) than those 25 years and under (5%). As expected, compared to adults aged 16-40, older adults (aged 41+) reported higher rates of: arthritis (16% vs 3%), diabetes (8% vs 3%), hypertension (17% vs 3%), and hypercholesterolaemia (16% vs 2%).
Rates of unemployment remained consistent across age groups (35-40%). Compared to unemployed adults, employed adults aged 26-60 reported slightly lower rates of anxiety (24% vs 30%) and depression (23% vs 29%). For adults aged 26-40 and 41-60, rates of living with a family member or partner were 62% and 53%, respectively. Across the age groups, two-thirds of adults reported they spend time with friends.
Conclusions:
Rates of mental and physical health conditions, employment, and everyday social and living experiences of autistic adults are mostly similar across the lifespan. These data will inform hypothesis-driven accelerated cohort research studies and inform the development of effective life-stage appropriate support and interventions.