Systematic COSMIN Review of Neurodiversity Attitudes and Knowledge Measures

Abstract

Background:

Many researchers seek to measure people’s knowledge of and attitudes toward neurodiversity concepts and advocacy. In this systematic literature review, we characterize measures of neurodiversity knowledge and attitudes and summarize studies that have used such measures.

Methods:

This study was funded by a Boston College Ignite grant aandwas preregistered on Prospero, ID# CRD420251013298. We searched ERIC, Education Source, PsycINFO, Scopus, Web of Science, and Sociological Abstracts databases on March 11, 2025. We hand searched the journal Neurodiversity on June 11, 2025. Inclusion criteria were that studies were peer-reviewed, published in English, and included a neurodiversity knowledge or attitudes measure. For formal validation studies, we follow the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines for describing and evaluating measurement properties and study quality. Procedures include the COSMIN Risk of Bias checklist, the COSMIN Good Measurement Properties to rate study results, and the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) system for synthesis and presentation. For studies in which a neurodiversity knowledge and/or attitude measure was used but not formally validated, we used an abbreviated coding scheme to assess their basic characteristics and whether they were incidentally validated on any of the nine measurement properties.

Results:

We located 13 studies: four validation studies of four neurodiversity attitudes measures, and nine studies using a neurodiversity knowledge and/or attitudes measure. All four measures received “very low” GRADE ratings for all aspects of content validity, and no measure received more than two “high” ratings across all measurement properties. Only one measure received a high GRADE rating corresponding with positive evidence, and this was for internal consistency of the Autism and Neurodiversity Attitudes Scale.

Conclusions:

We cannot recommend any of the measures we examined for use in research, but our findings suggest that continued efforts at validating these measures could be promising.

Community Brief

Why is this an important issue?

Neurodiversity refers to a set of concepts and movements led by autistic and other neurodivergent people. There are different ways of describing neurodiversity, but many neurodiversity advocates agree that neurodivergence is natural and not a sign of disease, neurodivergent people need support and not cures, neurodivergent people should have rights, and neurodivergent people are disabled when society does not value or accommodate neurodivergence. Some researchers use assessments to determine how much people know and what they feel about neurodiversity concepts and advocacy. These assessments are important because they help researchers determine things such as whether people know enough about these concepts to be ready to do work to include neurodivergent people, or whether knowledge and attitudes have improved after intervention.

What is the purpose of the review?

Our purpose was to evaluate measures of neurodiversity knowledge and attitudes. We wanted to know how frequently researchers use measures such as these, and how good the measures are at determining what people know and feel about neurodiversity. If measures were not designed well, research results can be misleading.

What did the authors do to review the literature?

We used software to find and sort through research that has been published using neurodiversity attitudes and knowledge measures. We then used guidelines for evaluating studies designed to develop neurodiversity measures, called the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidelines. These guidelines help researchers determine how well the measures work for nine different measurement properties. For studies that used a neurodiversity measure but were not designed to develop the measure, we used a simpler version of these guidelines.

What studies did the authors find?

We found 13 studies; four studies that were designed to develop and test the properties of neurodiversity attitudes measures, and nine studies that used a neurodiversity attitudes or knowledge measure, but were not designed to test its properties. One study belonged to both these groups.

In summary, what did those studies show?

We found some positive aspects of the measures, which are that they are easy to administer and free for researchers to use. We also found that the four studies designed to develop and test the properties of neurodiversity knowledge and attitudes measures received “very low” grades for most measurement properties. There were some properties that looked good for some measures, but none of the measures had good supporting evidence for more than one property.

What are the remaining gaps in the literature?

Researchers will need to do more work to develop measures that we can be sure assess the neurodiversity-related concepts and attitudes we intend to assess, produce consistent results, and are sensitive to changes in people’s knowledge and attitudes that may occur over time or as a result of participating in an intervention.

Based on this review, what do the authors recommend?

We cannot yet recommend that researchers use the neurodiversity knowledge and attitudes measures that have been developed so far. Instead, we encourage researchers to continue to work on improving these measures.