Autistic people with learning disabilities and complex needs for support are underrepresented in research. There is an urgent need to change this.
This project will develop practical advice and new research tools to increase the amount of research focusing on autistic people with complex needs. The research team will collaborate with the autism community. The project will create an online resource called the Complex Needs Research and Development hub (COMRAD). COMRAD will provide advice and resources for researchers on how to 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 intellectual disabilities. This group is sometimes referred to as having complex needs. We set up our Complex Needs Study Group to make a plan to change things. This group is made up of research experts, healthcare professionals, autistic people and parents of those with complex needs. This group have identified common reasons why research projects haven't included autistic people with complex needs. They designed this research project to put things right.
What is the aim of this research?
This research project aims 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 conduct robust research with people who are minimally verbal, who have profound intellectual disabilities or who experience difficulties participating in daily activities due to severe sensory processing differences and distress.
- A forum in which researchers can exchange resources and ideas and foster collaborations.
How will the resource be created?
The project will follow these three stages:
- Literature reviews: Two researchers will systematically summarise all existing research involving individuals with complex needs along with all relevant legal and policy documentation that set out how to support and make adjustments for individuals with complex needs.
- Experience-based co-design: 20 autistic people (sometimes with their carers) and 20 researchers will be interviewed about their research experiences to identify the potential barriers that exist for involving autistic people with complex needs in research. In a second stage, autistic people and researchers will then come together to co-create solutions to these barriers and to develop best-practice guidelines for researchers.
- Development and pilot testing of new research tools: In this part of the project the researchers will develop research tools for testing important abilities and challenges (e.g., sensory differences, language, distress, learning, attention) by using short and engaging touchscreen games along with tools that measure eye movements and physiological responses.
Once these stages are complete the team will have a good idea of what works and what doesn't for research in this group. They will then develop the Complex Needs Research and Development hub (COMRAD). This resource will be shared with researchers that want to carry out research in those with complex needs.
The Complex Needs Study Group will be involved at all stages of the project.
How will this project benefit autistic people?
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 to develop greater understanding about how to help this group. More immediately, the project will benefit those involved who will shape the future of research involving autistic individuals with complex needs.
Autistica is committed to ensuring that more autistic people with complex needs are involved in research so that we increase the evidence base about this group who have been under-served for too long. All the resources that will be available through COMRAD will be shared widely and openly and we will work with other research funding organisations to encourage them to fund more studies in this area.