Guidelines for conducting research with the autistic community
This guidance covers the considerations that researchers should take into account when conducting research with the autistic community (autistic adults, parents of autistic children, family members and carers).
It promotes effective communication and equal partnerships between the autism and research communities so that the needs of participants pre, during and post research are taken into account and that they are supported through the research pathway. Although the focus is on research with the autism community, it is anticipated that the recommendations will be helpful for all participants, not just those with autism. This guidance is based on discussions with the autistic community and it is anticipated that they will be reviewed and modified with further discussion over time. In particular, we would like to acknowledge that although Autism@Manchester aims to follow these guidelines it is likely that we are not achieving all the recommendations and there is always room for improvement.
Who is it for?
- Researchers in the field of autism
- The autistic community
This guidance provides practical recommendations in four areas:
- Pre-study considerations
- Recruitment of participants
- Study visit considerations
- Post-study considerations
More about this guidance
Researchers are asked to take this guideline into account, alongside the individual needs, preferences and values of their participants and their research. The application of the recommendations in this guideline is not mandatory.
In addition to these guidelines, all individuals involved in research are expected to ensure that the highest standards of integrity, honesty and professionalism are adhered to, in respect of their own actions and how they respond to the actions of others. This relates to the whole extent of research work including, but not limited to: designing studies and experiments; generating, recording, archiving, analysing and interpreting data; sharing data and materials; applying for funding; presenting and publishing results; training new researchers, staff and students; and peer reviewing the work of other researchers. The direct and indirect involvements of colleagues, collaborators and others should always be acknowledged.
Where applicable, the group expects researchers to observe the standards of research practice set out in guidelines published by scientific and learned societies, and other relevant professional bodies. All researchers should be aware of the legal requirements which regulate their work including health and safety legislation, the Data Protection Act, the Freedom of Information Act and the Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects.
The recommendations in this guideline represent the view of Autism@Manchester, based on workshop consultations with the autistic community.
Autism@Manchester is a community of academics, clinicians, practitioners, autistic individuals and their families and carers working together to achieve quality research with real meaning for people with autism. It encourages and facilitates a more holistic approach to research so the autism and research communities can come together more easily to work and share knowledge about autism research. The ultimate goal is to enable researchers to produce quality research with real meaning for autistic people. In order to forward this goal, Autism@Manchester conducted a series of workshops with the autism community in order to improve mutual understanding around the research process, look at the impact of research on participants and explore how the academic and autism communities could better work together on research. These were conducted as a collaboration between Autism@Manchester and Salfordautism, an autism support group led and run by autistic professionals serving the autistic community in the Greater Manchester area.
This guideline reflects the discussions and suggestions made in the focus groups held with the autistic community during the workshops in consideration of their role as ‘expert by experience.’ Workshop participants were also consulted during the drafting of this document and their views incorporated.
Emma Gowen1*, Rachel Taylor2, Thomas Bleazard, Anat Greenstein, Peter Baimbridge1,3, Daniel Poole1
1.Division of Neuroscience and Experimental Psychology, School of biological Sciences, Faculty of Biology, Medicine and Health Sciences, The University of Manchester
2.The University of Bolton
Download the guidelines
Download a full copy of the guidelines below.
Gowen. E, Taylor. R, Bleazard. T, Greenstein. A, Baimbridge. P and Poole.D (2019). Guidelines for conducting research with the autistic community. Autism Policy and Practice. Vol 2 No 1.