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Learning about the lives of adults on the autism spectrum

  • Research type

    Research Study

  • Full title

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



  • Contact name

    Jeremy Parr

  • Contact email

  • Sponsor organisation

    Northumberland Tyne and Wear NHS Foundation Trust

  • Research 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 lifecourse experiences of people with ASD. Experts in ageing and lifecourse, 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 lifecourse information (for example, any access to social support, education, training and employment opportunities, accommodation, lifestyle choices. Adults and relatives will be recontacted 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 lifestories, 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

  • REC name

    Wales REC 5

  • REC reference


  • Date of REC Opinion

    24 Jul 2014

  • REC opinion

    Favourable Opinion