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Background: Young people with neurodisability experience lower levels of mental wellbeing and are at increased risk of mental illness compared to their non-disabled peers. Social participation is recognised as a protective factor against mental illness and a potential pathway to support better mental wellbeing in neurodisability. Method: This co-design study involved young people, parents, and clinicians. First, possible interventions were identified through a rapid systematic evidence review. Any study designs were considered that included people with a neurodisability aged 0-18 years that evaluated a therapy intervention with social participation and mental health outcomes. Titles and abstracts were screened by two reviewers, from the included studies data were extracted and then presented using written summaries. Second, the summaries were discussed and prioritised in stakeholder groups with young people, parents, and clinicians. Groups were audio recorded and framework analysis was used to identify and specify intervention elements and their delivery. Results: The evidence review identified 13870 records, from which 43 were included. These records were published 1994-2017 and reported studies with 4-249 participants aged 16 months – 18 years with a range of neurodisabilities. Five intervention approaches (social skills training, arts, sports, technology, and play) were identified from the review. Two themes emerged from the stakeholder groups: intervention in the real world, feeling judged and feeling safe. The groups prioritised an intervention in real-world social leisure contexts (i.e. existing clubs and groups) using nine key intervention elements (e.g. feedback, positive verbal reinforcement) delivered by club leaders trained by healthcare professionals using five intervention procedures (e.g. a manual, video training). Conclusion: This study has identified core elements of social participation interventions that may improve mental health outcomes in young people with neurodisability, which should now be tested.

There is an urgent, agreed need to improve participation outcomes and interventions for children and young people with neurodisability. We worked together with service users and providers to design research into participation outcomes and interventions in neurodisability. We built on existing evidence about participation outcomes and interventions, and the WHO International Classification of Functioning, Disability and Health. We: (1) specified seven participation outcome categories for measurement; (2) prioritised these for improvement: self-care, friends and social, and physical activity ranked the highest; (3) identified eleven potential intervention categories for targeting the top priority, self-care, through eight hypothesised change mechanisms; and agreed for the interventions to be delivered as a ‘Menu of Interventions’ for personalised self-care support; and (4) designed a before-and-after mixed methods feasibility study to evaluate the Menu with children and young people (0-12 years), and their parents and therapists.

The transition to secondary school is a common cause of stress and anxiety, which can be exacerbated by the innate characteristics associated with Asperger syndrome (AS) and high-functioning autism (HFA). This study aimed to explore experiences of the transition to secondary school for students with AS/HFA from the parental perspective. Seventeen parents of children with AS/HFA from the north of England completed an online questionnaire about their child's school transitional experience. Responses indicated that there were a number of factors that influenced the experiences of pupils with AS/HFA at school and the preceding transition, including anxiety, bullying, friendship and support at school. Girls with AS/HFA presented with unique issues not commonly seen in the male dominated condition. The transition to secondary school was seen to encompass a number of difficulties for students with AS/HFA. Health and educational services can learn from the experiences explored in this survey in order to inform future practice.