Comparison of Characteristics of Autistic Adults between Different Age Groups across the Lifecourse in a UK-Wide Adult Autism Spectrum Cohort Study

Poster Presentation
Thursday, May 2, 2019: 11:30 AM-1:30 PM
Room: 710 (Palais des congres de Montreal)
A. Petrou1, J. Hamilton2, H. McConachie3, A. LeCouteur3, M. Woodbury-Smith4, B. Ingham5, T. Berney3, D. Mason6, D. Garland7 and J. R. Parr8, (1)Newcastle University, Newcastle Upon Tyne, United Kingdom, (2)Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle Upon Tyne, United Kingdom, (3)Institute of Health and Society, Newcastle University, Newcastle upon Tyne, United Kingdom, (4)Newcastle University, Institute of Neuroscience, Newcastle upon Tyne, United Kingdom of Great Britain and Northern Ireland, (5)Northumberland Tyne and Wear NHS Foundation Trust, Newcastle upon Tyne, United Kingdom, (6)Institute of Neuroscience, Newcastle University, Newcastle-upon-Tyne, United Kingdom, (7)Northumberland, Tyne & Wear NHS Foundation Trust, Newcastle upon Tyne, United Kingdom, (8)Institute of Neuroscience, Newcastle University, Newcastle Upon Tyne, United Kingdom

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.


To compare the characteristics (demographics, autism symptomatology, rates of mental and physical health diagnoses, and everyday experiences) of autistic adults from different age groups.


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).


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.


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.