This article explores coproduction in relation to autistic people. We reflect on the coproduction process with autistic adults from the Authentistic Research Collective at University College London. We aimed to support the autistic population's mental health needs by coproducing a document on adapting psychological therapy, and by developing a set of reflective guidelines to guide and encourage future coproduction initiatives between autistic and nonautistic team members. We reflect upon six elements that are of potential importance for future coproduction projects with autistic adults: (1) the meaning of coproduction; (2) ground rules and a traffic light system; (3) environmental adaptations; (4) digital communication tools; (5) encouraging authenticity; and (6) supporting autistic strengths. We conclude by discussing future research avenues into optimizing coproduction with autistic people, and how such research may influence both practice and policy.
Background
Autistic people show diverse trajectories of autistic traits over time, a phenomenon labelled ‘chronogeneity’. For example, some show a decrease in symptoms, whilst others experience an intensification of difficulties. Autism spectrum disorder (ASD) is a dimensional condition, representing one end of a trait continuum that extends throughout the population. To date, no studies have investigated chronogeneity across the full range of autistic traits. We investigated the nature and clinical significance of autism trait chronogeneity in a large, general population sample.
Methods
Autistic social/communication traits (ASTs) were measured in the Avon Longitudinal Study of Parents and Children using the Social and Communication Disorders Checklist (SCDC) at ages 7, 10, 13 and 16 (N = 9744). We used Growth Mixture Modelling (GMM) to identify groups defined by their AST trajectories. Measures of ASD diagnosis, sex, IQ and mental health (internalising and externalising) were used to investigate external validity of the derived trajectory groups.
Results
The selected GMM model identified four AST trajectory groups: (i) Persistent High (2.3% of sample), (ii) Persistent Low (83.5%), (iii) Increasing (7.3%) and (iv) Decreasing (6.9%) trajectories. The Increasing group, in which females were a slight majority (53.2%), showed dramatic increases in SCDC scores during adolescence, accompanied by escalating internalising and externalising difficulties. Two-thirds (63.6%) of the Decreasing group were male.
Conclusions
Clinicians should note that for some young people autism-trait-like social difficulties first emerge during adolescence accompanied by problems with mood, anxiety, conduct and attention. A converse, majority-male group shows decreasing social difficulties during adolescence.
Background: Autistic people have a high likelihood of developing mental health difficulties but a low chance of receiving effective mental health care. Therefore, there is a need to identify and examine strategies to improve mental health care for autistic people. Aims: To identify strategies that have been implemented to improve access, experiences of care and mental health outcomes for autistic adults and examine evidence on their acceptability, feasibility and effectiveness. Method: A co-produced systematic review was conducted. MEDLINE, PsycINFO, CINHAL, medRxiv and PsyArXiv were searched. We included all study designs reporting acceptability or feasibility outcomes and empirical quantitative study designs reporting effectiveness outcomes. Data were synthesised using a narrative approach. Results: A total of 29 articles were identified. These included 16 studies of adapted mental health interventions, seven studies of service improvements and six studies of bespoke mental health interventions developed for autistic people. There was no conclusive evidence on effectiveness. However, most bespoke and adapted approaches appeared to be feasible and acceptable. Identified adaptations appeared to be acceptable and feasible, including increasing knowledge and detection of autism, providing environmental adjustments and communication accommodations, accommodating individual differences, and modifying the structure and content of interventions. Conclusion: Many identified strategies are feasible and acceptable and can be readily implemented in services with the potential to make mental health care more suitable for autistic people, but important research gaps remain. Future research should address these and investigate a co-produced package of service improvement measures.
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