Title: Autism - Understanding Developmental trajectories, and Inequalities in diagnosis and Treatment in adults aged 50 and over (AUDIT-50)
Funder: Dunhill Medical Trust

Abstract: Background/aims: About 240,000 UK adults aged 50 years and over (≥50) have an Autism Spectrum Disorder (hereafter called autism*). The sparse evidence suggests they have poor outcomes and lack support. Improvements in care and wellbeing are hindered by limited understanding of needs. Our three-year project addresses this. It aims to: 1. provide the first estimate of UK autism diagnostic coverage among ≥50s, elucidating inequalities in diagnostic provision; 2. describe the mental and physical health needs of ≥50s diagnosed with autism, and their receipt of healthcare, identifying any autism-related inequalities in provision; 3. capture the experience of ≥50s with high autistic traits (including those with no diagnosis); investigating how high levels of autistic traits relate to cognitive and mental health in ageing, and mechanisms underpinning these relationships; 4. understand older autistic* people’s views on their healthcare needs, facilitators and barriers to diagnosis and support, and how to overcome these barriers. Methods: Aims 1-2 will utilise The Health Improvement Network (THIN), a longitudinal, UK primary care database (n=~11,500,000; >12,000 ≥50s diagnosed with autism). Aim 1: We will (i) calculate autism diagnosis prevalence in ≥50s who have records in THIN; (ii) compare this with expected true prevalence (modelled from epidemiological literature), in order to estimate the proportion of autistic people aged ≥50 who are undiagnosed; (iii) compare proportion undiagnosed across gender, socioeconomic status, and ethnic group to elucidate any inequalities in the likelihood of people from marginalised groups receiving a diagnosis. Aim 2: We will (i) describe prevalence of mental and physical health comorbidities in ≥50s diagnosed with autism in THIN; (ii) test the hypothesis that prevalence exceeds that in controls matched on demographics and local geography; (iii) use established measures of receipt of healthcare to test the hypothesis that ≥50s diagnosed with autism have fewer health assessments and medication reviews, but more psychotropic prescriptions than matched controls. Aim 3: We will add autism measurement (Broad Autism Phenotype-Questionnaire, Autism Quotient-10) to PROTECT (longitudinal cohort study of 20,700 ≥50s; estimated 1.4% autistic) and (i) use multivariate approaches to explore whether, in ≥50s, higher levels of autistic traits predict poorer subsequent cognition (e.g. working memory) and mental health (e.g. anxiety); (ii) investigate putative processes (e.g. sleep disturbance, loneliness) underlying these relationships. Aim 4: We will: interview ~20 purposively-sampled autistic older people and ~5 informal caregivers; analyse transcribed data using Framework Analysis; and use findings to contextualise quantitative outputs. *Terms preferred by the autism-community (see PPI)

Lay abstract: About 240,000 UK adults aged 50 and over have autism. They often lead difficult lives, including living with mental and physical health problems. Currently, services are not well designed to support them. Improvements are held back by limited understanding of their circumstances and needs. This three-year project aims to fill important gaps in knowledge about autism in later life. We hope it will help improve care, increase professionals’ knowledge, and inspire more research. We will investigate four areas: (1) Diagnosis: how often is autism among people aged 50 and over undiagnosed? Are women, poorer people and those from minority ethnic groups less likely to be diagnosed? (2) Physical and mental health needs and healthcare: how common are mental and physical health problems in older people diagnosed with autism? Are older autistic people less likely to receive high-quality healthcare? (3) The mental health needs of the many older autistic people who don’t have a diagnosis: What are their needs? How do these needs arise? (4) Older autistic people’s own perceptions of needs and barriers to accessing support: what help do they say they need? What could be done to improve their care and support? To answer these questions, we will make innovative use of two large datasets with great potential to find new insights into autism and later life: (1) The Health Improvement Network (THIN) database, which has GP records of 11.5 million people, including over 12,000 autistic people aged 50+; (2) The PROTECT Study, which already contains information about 20,700 older people, collected over several years by a survey. We will enhance PROTECT by adding questionnaires on autism. Over the study lifetime, this will create a new dataset for us to understand the needs of older people who have high levels of autistic symptoms, but no diagnosis. As PROTECT data collection is already funded to continue for 18 years, this will also create a unique resource for future research. We will complement work on these datasets by talking in-depth with around 20 older autistic people and 5 family carers to understand their experiences and generate new ideas for service improvement. We want to ensure our work has impact beyond research. We will work with charities, a communications strategist, an artist, practitioners, and older autistic people to design resources and target project communication to the autism community. We will use our many health and social care contacts to influence key policymakers.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE;MENTAL HEALTH