Autistic people with learning disabilities and complex needs are underrepresented in research. There is an urgent need to change this.

This project developed practical advice and new research tools to increase the amount of research focusing on autistic people with complex needs. The research team collaborated with autistic people and their families on this project. Together, they created an online resource called the Complex Needs Research and Development hub (COMRAD). COMRAD provides advice and resources to help researchers include autistic individuals with complex needs in research.

In our review of UK research funding, we highlighted a lack of research in autistic people who have many conditions, including people with a learning disability. This group is sometimes referred to as having complex needs. We set up a complex needs study group to change things. This group was made up of research experts, healthcare professionals, autistic people and parents of those with complex needs. This group identified common reasons why research projects haven't included autistic people with complex needs. They designed this research project to put things right.

The aim of the research

This research project was to set up a resource called COMRAD to provide researchers with:

• Comprehensive best-practice guidelines on how to include autistic individuals with complex needs in research
• A toolbox of research methods that help researchers run robust research with people with complex needs. This includes people who communicate without speaking, or have profound learning disabilities, or experience difficulties participating in daily activities due to severe sensory processing differences and distress.
• A forum where researchers can exchange resources, ideas and collaborate.

The research process

The project had three stages:

1. Literature reviews: Two researchers systematically summarised all existing research involving individuals with complex needs. They also looked at all relevant legal and policy documentation setting out how to support and make adjustments for individuals with complex needs.
2. Experience-based co-design: The researchers interviewed 20 autistic people (sometimes with their carers) and 20 researchers about their research experiences to identify potential barriers to involving autistic people with complex needs in research. Then, autistic people and researchers co-created solutions to these barriers, developing best-practice guidelines for researchers.
3. Development and pilot testing of new research tools: The researchers developed research tools for testing important abilities and challenges (e.g., sensory differences, language, distress, learning, attention). They used short and engaging touchscreen games along with tools that measure eye movements and physiological responses.

The Complex Needs Study Group were involved at all stages of the project.

The long-term goal of this project is to speed up high-quality research involving autistic people with complex needs. We hope this will help us develop a greater understanding of how to help this group.

At Autistica, we're committed to ensuring that more autistic people with complex needs are involved in research. This will increase the evidence base for understanding and supporting a group that research has under-served for too long.

[1] Rydzewska, E. et al. (2018) Prevalence of long-term health conditions in adults with autism: observational study of a whole country population