Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: A systematic review.

Most of the trials were small and early. Eleven of the 19 (58%) described themselves as pilot, feasibility or exploratory and were underpowered, so this review shows what has been measured in autism mental health research rather than what works. Almost all the trials left out autistic adults with intellectual disability or an IQ below 70, so the review says very little about the group most likely to need support. Only English-language papers with a retrievable full text were included, and screening and data extraction were done mostly by one reviewer, with a second checking 10% to 20% of records and 75% agreement on the extracted data. The trials used such different interventions and measures that the authors did not combine the results, so no pooled estimate of effect is available. For 18 of the 22 reports (82%) there was too little information on harms, effect sizes or cost to judge whether the benefits outweighed the harms or cost of the intervention. Community involvement was rarely reported, and the two teams who supplied extra detail described involvement that was limited, so it is hard to judge how far autistic people shaped the outcomes measured. The quality appraisal tool the authors used is a poor match for pilot and preliminary trials, which were most of what they found.

The authors declared no conflicts of interest and said they received no financial support for the research, authorship or publication of the article. The research team itself included autistic and non-autistic researchers who took part in developing the questions, the design, the data gathering and the interpretation.

Do not read this review as evidence that mental health interventions do or do not work for autistic adults. It counted which outcomes the trials measured and how they measured them, and most of the trials it found were underpowered pilots, so it says nothing about whether the treatments helped.