Autism Conditions in Adulthood - Learning about the lives of adults on the autism spectrum and their relatives

Study ID: 18481
Short Title: The Adult Autism Spectrum Cohort - UK
Organisation: Dorset County Hospital NHS Foundation Trust
Location: Dorset County Hospital
Condition: Developmental Disorders
Main Specialty: Mental Health
Expected End Date: 01/09/2019
Postcode: DT1 2JY
Contact Name: R&D department
Contact Email:
Active: Yes

Inclusion Criteria

Adults aged 16 or older with a diagnosis of ASD

Exclusion Criteria

Those adults who have been approached to participate in the research project, but do not want to take part. There are no other exclusions. We anticipate that any adult who does not speak sufficient English to complete the forms will be helped to do so by their local local health and social care teams

Study summary:

At least 1% of adults have autism spectrum disorder (ASD). However, very little research has been undertaken into how the lives of adults and older people with ASD can be improved. In this project, we will undertake the first stage of a programme of research into the life-course experiences of people with ASD. Experts in ageing and life-course, experienced ASD researchers, and people with ASD and relatives will undertake this project. We will engage with people with ASD, their parents, siblings and partners, and meet and discuss with them to understand much more about how ASD affects people’s daily lives as they age. We will work locally and nationally with clinicians, and the ASD community to identify at least 500 adults and older people with ASD, and around 500 relatives/carers who want to participate in a research cohort. We will ask adults to complete questionnaires about a variety of topics including their diagnosis, information about their physical and mental health, and life-course information (for example, any access to social support, education, training and employment opportunities, accommodation, lifestyle choices. Adults and relatives will be re-contacted by us to update information, and also be sent new questionnaires. As we progress, we may ask adults whether they are happy to be visited by a researcher. Through understanding people’s life-stories, we will identify key priorities for future research. Increasing the opportunities for adults on the autism spectrum to inform the research agenda and take part together with their relatives/carers, in new cutting edge research opportunities is a vital step in increasing our ability to make rapid, valid research gains that will translate into enhanced understanding of ASD

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