EQUALS - Ethical Quality Autistic-Led Support
Research type
Research Study
Full title
Developing and applying new autistic-led standards for social care environments: a participatory action research study of Ethical Quality Autistic Led Support (EQUALS)
IRAS ID
336051
Contact name
David M.R. Orr
Contact email
Sponsor organisation
University of Sussex
Duration of Study in the UK
1 years, 4 months, 15 days
Research summary
This study will explore how to improve social care for autistic adults by investigating how services can use a guide written by and for autistic people. The Independent Guide to Quality Care for Autistic People, created by the National Autistic Taskforce (NAT), sets out what good support looks like, especially for people with high support needs. The study will work in partnership with two adult social care providers in England, using Participatory Action Research (PAR). Autistic residents, support workers, managers, family members, and researchers will work together as partners to make changes in services and learn what helps or gets in the way. At each site, autistic people who use the service and the staff who support them will form small groups. These groups will choose areas they want to improve, mapped to the NAT Guide principles. They will plan changes, then try out those changes in real life, and reflect together on what worked and what didn’t. Researchers will also gather data on what worked and why, by speaking to people one to one, observing what happens in daily life, and collecting feedback using short surveys. Communication methods will be used that include autistic people who do not use words to communicate or who need high levels of support. The aim is to create a practical ‘EQUALS framework’ to help services to adopt the NAT guide in real life. The framework will include examples, training materials, and advice for staff, services and families. Autistic leadership and lived experience will be central throughout the study. The results will help social care services better understand how to deliver support that promotes quality of life, rights and autonomy.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
26/LO/0037
Date of REC Opinion
20 Feb 2026
REC opinion
Further Information Favourable Opinion