C4C maps support for autism carers across Europe
Our consortium has published a scoping review examining what works best for supporting carers of autistic people, both in providing effective everyday care and in managing the emotional and mental demands of caregiving.
Why the review was needed
Carers, which includes parents, family members, informal carers, and support workers, play a central role in enabling autistic people's inclusion, communication, and access to care. Yet research on how best to support carers is scattered across health, education, psychology, and social-care literature, with no clear synthesis of what works, for whom, and how it might translate into training. The scoping review was commissioned to close that gap, mapping evidence across two topic areas: a) Supporting carers to provide effective day-to-day care and b) Supporting carers to manage the mental load of caring.
What the review found
The team screened 615 records and ultimately extracted 151 studies,128 of which were used in the ultimate analysis: 119 about effective care and 9 for managing the mental load.
Evidence for the topic of effective care was extensive, particularly around communication supports (including augmentative and alternative communication, parent-mediated interventions, and video modelling), behavioural and skill-based approaches, structured routines, and carer training and coaching. A recurring theme was that carers who are trained or coached to implement strategies in daily life, rather than simply given information, tend to see the strongest improvements in both their own confidence and support outcomes.
The evidence for the topic of managing the mental load was smaller but still meaningful. Psychoeducation, cognitive-behavioural approaches, and mindfulness-based interventions were associated with reduced carer stress, anxiety, and burden. Peer support emerged as one of the most valued sources of relief, while practical and respite support remained underexplored in the literature.
Notably, the review found strong overlap between the two topic areas: interventions that build carers' practical skills often also boost their confidence and wellbeing, and vice versa — a finding that will directly shape how C4C structures its training curriculum.
The full review will inform the development of C4C's training content, ensuring it addresses both hands-on caregiving skills and the emotional realities of the caring role.