Approaches to improving mental health care for autistic people: a systematic review

Abstract

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.

Approaches to improve mental health care for autistic children and young people: a systematic review and meta-analysis

“…This review, together with our review on autistic adults (Loizou et al, 2023), shows a similar pattern of most papers reporting communication and intervention content adaptations, but few reporting environmental adjustments. Parental and school involvement was an adaptation category specifically relevant to CYP, but evidence on CYP views of such involvement was lacking.…”

“…Additionally, some adaptations reported, such as those relating to accommodating individual differences, are part of general good clinical practice rather than only specific to autism. This review, together with our review on autistic adults (Loizou et al, 2023), shows a similar pattern of most papers reporting communication and intervention content adaptations, but few reporting environmental adjustments. Parental and school involvement was an adaptation category specifically relevant to CYP, but evidence on CYP views of such involvement was lacking.…”

“…Evidence on effectiveness was of higher quality than in the review relating to adults (Loizou et al, 2023), due to more RCTs having been conducted. Nonetheless, the certainty of evidence for effectiveness, based on the GRADE system rating (Guyatt et al, 2008), ranged from low to moderate (Table S10 and S11), meaning further research is likely to significantly impact our confidence in the findings.…”

“…This review together with our review relating to autistic adults (Loizou et al, 2023) can contribute to national guidelines for mental health provision for autistic people to be tested in a small number of well-funded research projects prioritising co-production and ensuring participation from under-represented groups.…”

“…Therefore, a lived experience researcher (RRO) developed criteria derived from existing literature and personal experience, labelled the Autism-Inclusive Research Assessment (AIRA), to measure the extent of autism-inclusive practices in research. The criteria were first used in our systematic review regarding autistic adults (Loizou et al, 2023) but were also piloted on papers with CYP in the present review to determine applicability. The five assessment criteria for the AIRA are: 1) reported lived experience involvement in the design, conduct, or write-up of the paper; 2) reported adjustments made to data collection process for papers with qualitative elements (Benford & Standen, 2011); 3) reported adjustments made to data collection tools for papers with quantitative elements (Nicolaidis et al, 2020); 4) reported adaptations or validity of relevant outcome measures for autistic people for papers with quantitative elements; 5) for papers with quantitative elements, perceived inappropriate focus of the tested intervention/strategy on masking/changing autistic traits, which might have not inherently caused distress or worsened quality of life (Chapman & Botha, 2023).…”