Community engagement with individuals with lived experience of autism and intellectual disability to promote awareness and service utilisation for early identification and intervention: a scoping review has been published on the Neurodiversity journal website. DOI

This publication has come out as an output from the Community Engagement and Involvement workstream as part of project NAMASTE and is authored by Bhavya Malhotra, Sweta Pal, Reetabrata Roy and Gauri Divan from Sangath with other authors from partner institutes. 

The review article is the first of its kind to report on how to engage people with lived experience, especially those who are autistic or are caregivers of autistic adults in building awareness and subsequently lead to programmes that help with detection and intervention.  This particular scoping review reports on studies that have successfully done this and asks and answers (to an extent) critical questions about:

• What level of engagement currently exists?
• Whose lived experience is involved in building community-engaged awareness materials towards service uptake?
• How are people with lived experience involved (approaches, methods, tools)?
• When is lived experience included in the research cycle and whose interest is prioritised?

It concludes by offering the perspective that building a taxonomy of community-engaged research strategies based on levels of engagement and corresponding methodologies (approaches, methods and tools) may help to answer critical questions underlying power sharing within community engagement.

Article in PDF version

Bhavya Malhotra with her poster presentation at the INSAR Annual meeting in USA in 2025

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