Supporting those who support autistic adults
Research type
Research Study
Full title
A qualitative investigation into what carers of autistic adults want from a support network group.
IRAS ID
355043
Contact name
James Temple
Contact email
Sponsor organisation
Mersey Care NHS Foundation Trust
Duration of Study in the UK
0 years, 7 months, 3 days
Research summary
Autism Spectrum Condition is a neurodevelopmental condition that is characterised by social communication difficulties, restricted repetitive behaviours, inflexible adherence to routine, and sensory hypo-and-hyper-sensitivities (Greaves-Lord et al., 2022). Being autistic can have a negative impact on daily functioning. For example, autistic people are less likely to be in employment, more likely to have limited social connections, more likely to have lower income or require benefits and therefore struggle to attain the basic necessities (e.g. housing), and are more likely to struggle to leave the house to complete independence and daily tasks (Gotham et al., 2015). This may leave autistic adults requiring additional support from family or friends. Diagnoses of autism rose by 787% between 1998 and 2018, and adults were the most affected group (Russell et al., 2022). Thus, there may be a growing number of adults who rely on their family and friends for support with daily activities. While there is support currently available for those who support autistic adults (i.e. carers), this is mainly offered by third party organisations like the National Autistic Society (NAS), and charities. The types of support that they offer include advice, spaces for carers of autistic adults to get together, respite and information about autism (National Autistic Society, 2024). Despite this, larger government organisations like the NHS do not universally offer support for carers of autistic adults, and there is currently no support available through the NHS for carers of autistic adults in Merseyside. It is therefore important to investigate what carers of autistic adults might want from support, what the goals of this support should be, and the types of support that would be most suitable for carers, to inform the development of a support network group within local NHS services.
REC name
South East Scotland REC 01
REC reference
25/SS/0061
Date of REC Opinion
31 Jul 2025
REC opinion
Further Information Favourable Opinion