This project is about engaging adults on the autism spectrum and their relatives in research.
At least 1% of adults are on the autism spectrum. However, very little research has been undertaken into the life experiences of adults and older people on the autism spectrum, and how these can be improved.
To address this significant research gap, in January 2015, we will begin a research programme about the life experiences of adults on the autism spectrum and their relatives/carers. This project is being led by Newcastle University researchers, and funded by the research charity Autistica.
Our first research project in this programme is called 'Learning about the lives of adults on the autism spectrum and their relatives'. This project involves the creation of a cohort, or group, of adults on the autism spectrum and their relatives, which we have called the Adult Autism Spectrum Cohort - UK, or ASC-UK.
Aims of the Adult Autism Spectrum Cohort - UK
1. Work with people on the autism spectrum and their relatives, Autistica and the broader ASD community, in partnership to determine priorities, and how best to answer the most important research questions
2. Recruit at least 500 adults on the autism spectrum from across the age and ability range
3. Recruit at least 500 parents of adults with ASD, adult siblings, carers and partners
4. Gather information from both groups to answer key questions about autism lifecourse and ageing
5. Understand the experiences of the autism spectrum across the lifecourse, from people on the autism spectrum, their relatives, and providers of services to support people on the autism spectrum, including things that help and prevent an ‘ordinary life’ for people on the autism spectrum
Some adults on the autism spectrum may not be able to join themselves because of their autism condition or ability. In this instance, relatives or carers can join and answer questions about the adult who cannot consent themselves.
Our progress so far: We have been working with adults on the autism spectrum, and relatives/carers on the research plans, and the information and forms we will send people who might want to take part. We have received ethical approval in England, Scotland, Wales and Northern Ireland to begin our study.
Who will be able to take part, and what will people be asked to do?
This project will involve the recruitment of 500 adults on the autism spectrum, and at least 500 relatives/carers. We will be including adults on the autism spectrum of all ages and abilities. Parents or carers will respond for people who cannot take part themselves.
We will ask adults on the autism spectrum to complete information about topics such their autism spectrum diagnosis, information about their physical and mental health, and lifecourse information (for example, social support, employment, accommodation, lifestyle choices). We will ask relatives/carers to complete questionnaires too. We will be contacting adults and relatives/carers through many routes – including health and education services, and voluntary sector organisations. All information given will be kept securely by us and be confidential.
Adults and relatives will be recontacted regularly to update information so we hear how aspects of peoples’ lives have changed, and their experiences. For those who want to, there will be an opportunity to take part in other research projects.
We are not a clinical service, and so regret we are unable to offer any direct healthcare advice to adults or relatives. However, this study could possibly play a huge role in determining services and supports provided to adults and relatives in the UK, so it is extremely important you have your say!
If you would like some information about how we consulted the autism community about our research please click here
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