Community engagement

Community engagement is important to help autism researchers conduct excellent research, to ensure that voices from the autism community are heard, and to build and retain trust with the autism community.

ARC scientists commit to engaging the autism community in our research based on the following principles.

Transparency: The ARC recognises that autistic people, their families and the public have a right to transparency about what research is happening, why it is happening, and what the findings are. We will summarise every research project on our website and share relevant documents with our advisory panels and participants.

Participatory research: The ARC recognises that autistic people are key stakeholders in autism research. We therefore believe that autistic people and, where appropriate, their families and advocates can and should contribute to the design, methodology and relevance of autism research.

Participatory research includes co-design, consultation, and other forms of community engagement. It can involve a range of methods, from surveys and focus groups to members of the autism community becoming part of the research team. In all cases, it is based on respect for autistic people and their families, listening to different perspectives, building and retaining trust between autism researchers and the autism community, and ensuring that the autism community has a meaningful say in what research is conducted at the ARC and how it is undertaken.

Valuing expertise by experience: The ARC recognises that, when research has direct relevance to the everyday lives of autistic people, autistic people and other members of the autism community are experts by experience. Examples of such research include our projects about vulnerability, employment, education, and support. Experts by experience are of equal standing to other kinds of experts, such as scientific experts and clinical experts.

Alignment with ARC values: Our engagement will always align with the ARC Values. Our values statement is available on our website and includes a clear statement opposing eugenics, prenatal screening, and the prevention of autism. Whenever we engage members of the autism community, we will inform them of our values in advance.

Co-design: During co-design, scientific experts and experts by experience work in equal partnership to consider a research question and design a study to answer it. The ARC recognises the value of co-design, which allows the insight of the community to be deeply embedded within projects.

Consultation: The ARC recognises that forms of engagement other than co-design, such as consultation, are also important and may sometimes be more appropriate for the scale and relevance of a project. Examples include asking autistic people to give feedback about a project via surveys or focus groups. We will always consult autistic people and, where appropriate, other stakeholders about the design of new projects.

ARC Community Advisory Panel: The ARC has a panel of 250 autistic people and parents/carers of autistic children who have signed up to help when we are seeking input from the community about our research. This panel will be expanded as needed and will be managed by the ARC Database Manager. We will aim to ensure that this panel is representative of the full diversity of the autism community. We will not limit our engagement to the members of this panel if it not appropriate. For example, if a study involves GPs or social workers, we will identify and engage these other stakeholders.

Primary vs. secondary data: The ARC believes that it is especially important to meaningfully engage autistic people and, where appropriate, other stakeholders in all projects that involve new data collection from or about autistic people (primary data). The ARC also believes that projects that analyse data already collected by other researchers (secondary data) may still need to engage the autism community, especially if the projects have the potential to impact the lives of autistic people and other members of the autism community.

Proportionality: Engagement should always be proportionate to the size and nature of the study and to the impact that it may have. For example, for a small study, engagement may take the form of an online survey and/or a small number of focus groups. For larger studies and studies that deal with potentially sensitive issues (such as the collection of genetic data), engagement should involve a larger number of autistic people and, where appropriate, other stakeholders.

We aim to develop engagement plans for every ARC project that are proportionate to its size, nature, impact, and available resources. This means that we will consider what kind of engagement is appropriate for each project on a case-by-case basis. We will regularly consult autistic people and other members of the autism community about how proportionate our engagement is.

Integrating engagement into research: The ARC recognises that engagement should ideally be integrated into the research study during the study design process. Appropriate time and resources for engagement should be built into the timeline and budget of each project, just as time to obtain ethical approval or collect data is also built into the timeline. Embedding engagement into the research process will help high-quality research to be delivered efficiently.

Timing of engagement: Ideally, engagement should happen at the earliest stage in the life cycle of a research project (such as in defining the research priorities and research questions, co-designing the study, and co-writing the grant application). When engagement happens early enough, it is able to shape a project before any commitments are made to funders or ethics committees.

The ARC will endeavour to carry out early community engagement whenever this is feasible. Sometimes, early engagement may not be possible. However, we believe that engagement can still be conducted meaningfully at later stages. For example, researchers may consult on the study materials or on policy briefs that translate their research into impact on autistic people’s lives. Where it is appropriate, we will engage at all stages throughout the lifetime of a project.

Community engagement support: The ARC believes that researchers should take responsibility for planning their community engagement and should personally engage with autistic people and other stakeholders about their projects. If a specific project requires more extensive engagement, we will also endeavour to fund a Community Engagement Coordinator dedicated to that project.

Communications support: The ARC recognises that good science communication is an essential part of community engagement. This includes summaries of projects on the website and information packs, whenever appropriate, for people participating in community engagement and research activities.

Payments: The ARC values the time and input of experts by experience. We will offer everybody who participates in substantial engagement activities, such as participating in a focus group, payment at a level that is appropriate for the nature and demands of the activity. For example, we currently offer £20 per hour for participating in a focus group and for reading and thinking about materials in advance of a focus group. We will budget for these costs in our research funding applications. We will also continue to seek funds to enable early engagement on the design of projects that have not yet received funding. Sometimes, we will ask people to volunteer their time to complete shorter engagement activities, such as completing a brief online questionnaire. Asking for volunteers will help projects to engage a large number of people.

Accessibility and inclusion: We recognise the diversity of the autistic community and we understand that not all people prefer or are able to participate in engagement in the same way. We value the perspectives of all members of the community however they communicate and whatever their support needs, disabilities, or backgrounds. We therefore aim to design and host engagement events that enable everybody to communicate in their preferred mode. For example, some participants in a focus group may speak and some may type. Where possible, we will provide options for people to participate in other ways too, such as in a one-to-one interview instead of a group setting. We will try not to prioritise any particular style of communication and will aim to provide training to researchers that supports them in carrying out accessible engagement.

Representation: We recognise that some parts of the autistic community are under-represented in research engagement, including autistic people with high support needs, non-speaking autistic people, autistic women, and autistic people from ethnic minority backgrounds. Using demographic data we will monitor (anonymously) the representativeness of the community we engage with and aim to correct any under-representation by expanding our Community Advisory Panel.

Data sharing: ARC projects often collect data which may be of value to other researchers. Such data sharing can help researchers to undertake studies faster and with less resources, which can maximise the benefit of research to the autistic community. However, we recognise and respect the concerns of the community that such projects may not be neurodiversity affirming and that autistic people may not wish to support every project that seeks to use ARC data.

We will make it clear on Participant Information Sheets and consent forms during data collection whether or not these datasets may be available to share so that individuals can make informed decisions as to whether they still wish to support these projects. We will also set up Data Access Committees (which will include autistic people) for any new data collected, who will review all data access requests and ensure that we only share data with projects that autistic people support. We will also not share data with projects that we believe conflict with the ARC values.

Data Access Committees: Autistic people will always be included on our data access committees. Where other stakeholder groups are identified, we will include representatives of these groups on the committee as well. For example, a study collecting data on the brain types of parents would include parents as a stakeholder group. Decisions about data sharing will be resolved via discussion to reach a consensus, if necessary asking applicants to revise their requests. Data access criteria will be based on the ARC Values.

We welcome feedback from the autism community about this document and will update it periodically. Comments can be sent to [email protected]