Autistic Community involvement in research Ensuring engagement, involvement and participatory research is part of your autism research

Who is this OLA (Online Learning Activity) for?

Any researchers currently working with or considering working with the autistic community. The aim of this OLA is to contribute to achieving certain standards of research practice when working with and relating to the autism community (e.g. Gowen et al. 2019). This is important to maintain and increase trust between the autism and research communities. All researchers have a duty to cultivate this trust.

It should be acknowledged that much of this OLA is based on our own experiences in the Body, Eye and Movement (BEAM) Lab at The University of Manchester and that there are a number of other resources from different groups, listed at the end. This OLA is a component of a large and changing field.

  1. To recognize and explain the different ways you should be involving and engaging the autistic community* in your research
  2. To understand why involvement and engagement is an integral part of the research process and identify how your research will be of poorer quality without it
  3. To plan how you can involve and engage the autistic community in your research

*Here we are referring to "autistic community" as autistic people, their parents and family members

Who has developed this OLA?

This OLA has been developed by Drs Emma Gowen, Daniel Poole and Ellen Poliakoff. If you have any questions, please email Emma: emma.gowen@manchester.ac.uk

This OLA is divided into 3 main parts, designed to be completed in sequential order:

  • Part 1: What is engagement, involvement and participatory research? You will learn what activities fall into these categories
  • Part 2: Why should researchers plan engagement and involvement into their research? You will learn about the different benefits of incorporating autistic community involvement into your research, including real life examples of how research has been improved by autistic community involvement.
  • Part 3: How do researchers carry out engagement and involvement with the autistic community? You will learn how to incorporate these activities into your own research, including links to useful resources to get you started.

The OLA should take around 2 hours. You might find it useful to break after each part.

There is a short quiz at the start and end of this OLA, asking about what engagement and involvement practices you currently do. This aims to identify how you have increased your knowledge and ability to conduct engagement and involvement activities following completion of the course. It also enables us to measure how this OLA is contributing towards learning.

At this stage, you may know very little about involving the autistic community in your research. Alternatively, you may think that you do this regularly and have a good understanding of what types involvement practices there are. Start by taking this quiz to find out how much involvement and engagement you do at present. Once you complete the quiz, please return to this OLA to continue the training.

Quiz

How many of the activities did you respond “Yes” to? Were you surprised? Do you actually do less then you thought? Are you unsure of what some of the activities are or how to achieve them? If so, you are not alone. It has been shown that that many researchers thought they were doing well involving the autistic community, whereas the autistic community thought otherwise (Pellicano, Dinsmore and Charman, 2014). Read on!

Part 1: What is engagement, involvement and participatory research?

You may have heard the term Patient and Public Involvement and Engagement (PPIE). Engagement refers to the different ways that researchers can share their research with the public. An example would be a researcher making their research findings available to autistic participants. Involvement describes more active ways of involving the public. For example, a researcher may have an active discussion with autistic people about their research findings, leading to changes in their interpretation and plans for future research. Participatory research is where researchers and members of the community being researched (in our case, the autistic community) share planning and decision-making in a sustained and bidirectional manner. This is also called co-production and can be described as collaboration and partnership. Note that participation in a research study where the participant has been recruited as part of the sample does not count as PPIE. These different types of participation have been conceptualised as a ladder of power (Arnstein, 1969) (Table 1).

Table 1 showing the ladder of power (adapted from Arnstein, 1969). The first column indicates the type of activity and the second column provides a description. Participatory involvement and power increase up the ladder (towards the top of the table).

While this ladder serves as a useful concept, we ascribe to a more nuanced model of Arnstein’s ladder that emphasises co-production without always needing to aim for citizen power, using a variety of involvement methods that cater for a diverse community of “users” at different points in their life (Tritter and McCallum, 2006). For example, some may seek to become involved in a two-way dialogue as partners, while others may wish to provide input through questionnaires or even not wish to become involved. Therefore, while researchers should aim towards involvement and participatory practices, all aspects of appropriate engagement and involvement can provide a better research experience for participants and facilitate inclusivity. Table 2 below, provides examples of different types of engagement and involvement activities. In general, engagement occurs after the research has been planned, involvement starts during the planning stage after the initial idea has been formulated and participatory research occurs from the very beginning of the research (i.e. at idea formation).

Table 2. Wider arrows denote great levels of involvement by those that the research is about

Thinking back to the quiz, can you identify which category your current PPIE activities fall into (Participatory, involvement, engagement)? Have you identified any gaps in what you currently do?

Part 2: Why should researchers plan engagement and involvement into their research?

Quite simply, autism research conducted without involvement of the autistic community at some level is likely to be poor quality. Below are some key reasons why you should involve the autistic community.

  • Creating research that is accessible and attracts a wide range of participants
  • Creating research that is of benefit for autistic people
  • Contextualising your research in terms of real-world meaning
  • Ensuring outcome measures are meaningful
  • Ensuring that the research priorities of autistic people are addressed
  • Avoiding inappropriate research questions
  • Identifying new topics
  • Improving the design and feasibility of your research, leading to better quality data
  • Ensuring ethical integrity: Without suitable PPIE, research is more likely to fall below ethical standards due to wasting resources on irrelevant questions, using inappropriate methods and increasing the danger that the community being studied can inadvertently be stigmatised by the framing of the research
  • Increasing trust between researchers and the autism community
  • Increasing ease of recruiting participants as people trust the research team and their motives

You will find some reflections from researchers on how involvement has changed and improved their research. The first one is feedback from researchers to the Autism@Manchester expert advisory group following a meeting. The second one is a reflection from a PhD student that featured in the Autism@Manchester newsletter.

Examples from A@M expert by experience advisory group
Reflection on PPIE experience

Looking at the list of benefits, think about how the above studies benefited from consulting with the A@M expert by experience advisory group.

Watch this short video of autistic people talking about their experience of getting involved in research. They talk about how much they benefit from talking to the researchers to increase their general and personal autism knowledge. They also discuss how they enjoy meeting the researchers and visiting new places and have a continued interest in the findings after their participation. For some autistic people, research can be a form of post-diagnostic support. This film should highlight to you how important it is to provide knowledge, involvement opportunities and a good experience of research participation to autistic people.

Read the the abstracts of these two articles: Rad et al. 2018 and Kapp et al. 2019. What strikes you about the different messages in the two articles?

It seems that Rad et al. are advocating for a device to identify stereotypical movements in order to reduce them whereas Kapp et al. argue that stereotypical movements are coping strategies for autistic people. Do you think Rad et al. have consulted the autistic community? What potential problems could arise if Rad et al. continue their research without autistic input? This example highlights neurodiversity as a way of understanding autism rather than a deficit model.

This is an optional presentation to watch. Autism@Manchester ran a live event where we discussed what could go wrong when research does not involve the community they are researching, using real examples. You can watch the event here

Part 3: How do researchers carry out engagement and involvement with the autistic community?

Read this article on the different ways you can engage and involve the autistic community in each stage of your research.

Gowen et al. 2019

To help you incorporate some of these recommendations here are some resources.

Expert by experience advisory group: Autism@Manchester already has an autism expert by experience group. There is a face to face and a virtual group. These groups can help advise on your project as well as look at participant facing material (e.g. information sheets, questionnaires). Although a small amount of funding for providing lunch/travel is usually requested for the face to face group it is sometimes possible to consult the group for free. The virtual group is free and you can post questions/documents for comment at any time. Please email Emma (emma.gowen@manchester.ac.uk) if you would like to discuss your research with the group.

Examples of “what to expect” documents and videos:

Examples of “how to get there” documents and videos

In our previous studies, participants have appreciated the researcher asking whether they would like to be met at the station/elsewhere to walk to the study location together. To help find each other, you can let them know what you are wearing and provide a photo of yourself beforehand.

Examples of websites which include introductory information about the team, lay summaries and resources

Regarding engagement, although these recommendations will help you to incorporate engagement into your research, you cannot possibly predict all of the specific needs an individual may have. One of the main things is to adapt to the needs of the individual participant. The most basic thing a researcher can do is ask themselves (and the participant) ‘Am I making this as easy as possible for them to take part/ am I making sure they get something out of participating’.

There are differences between researchers too and there may be some aspects that you dont feel confident doing. Some of these recommendations may need to be adapted for the individual researchers. For example, if the researcher has a disability it may be difficult for them to meet participants and alternative options should be identified (e.g. asking a colleague to help meet participants, providing videos of how to get to the study location)

Its time to put your learning into practice. Now you have a good idea of the different ways you can involve autistic participants, lets incorporate this into your current or next study.

Open this PPIE checklist and tick the involvement activities that you will aim to incorporate in your next or current study. This table is taken from the Gowen et al. 2019 paper that you have just read. Note that the recommendations are ordered to start with the least onerous, minimum standards that might be expected of researchers, and build up towards more comprehensive models of inclusive working. Some of these approaches may seem challenging, but all researchers should be able to incorporate some minimal standards (denoted by an asterisk in the table).

Once you have completed that, incorporate your plans into your existing/future protocol or pre-registration document. Now you should have a clear engagement and involvement plan.

To finish this module, take the quiz thinking about how your research design has now incorporated involvement and engagement. Has the number of times you choose "Yes" increased?

Quiz