Priorities and Perspectives Regarding Goals and Outcomes of Support for Autistic Children Under 12 Years: A Systematic Review.

Most included studies were carried out in Western, English-speaking countries, so these priorities may not reflect how families and clinicians elsewhere define a good outcome. Many studies used small, fairly similar groups of participants, with limited representation of racially and ethnically diverse families, lower-income families, and people without a formal autism diagnosis. Only peer-reviewed papers published in English were included, which likely left out perspectives from non-English-speaking communities and unpublished work. Several studies did not involve autistic people in designing, carrying out or interpreting the research, and even where autistic participants took part, the authors say power dynamics may have limited how much their views shaped the conclusions. The studies used the same words to mean different things. 'Independence' meant completing tasks unaided in some studies and making your own choices with support in others, which makes the findings harder to compare. This is a narrative synthesis of 15 studies, not a pooled analysis, so it produces no numerical estimate of anything.

The authors declared no conflicts of interest. The work was funded by a Victoria University of Wellington doctoral scholarship. The first author is an autistic adult with professional experience supporting autistic people and their families, conceptualised and conducted the review, and developed the framework used to judge how far each study aligned with neurodiversity-affirming principles. That framework was applied to study design and stated procedures, not to participants' expressed views.

This review reports what stakeholders said they value, not what support works. A high ranking for autonomy or well-being does not mean those goals have been shown to improve outcomes. No intervention was tested in this paper, so nothing here tells you which approach to use.