Autism Research: Nothing About Me Without Me

Dr. Wenn Lawson discusses “nothing about us without us” and capacity building to enable the benefits of participatory research co-production. He differentiates traditional, participatory, and co-production research methodologies and recounts his experiences in conventional autism research studies. Lawson shares videos about co-production within research and society and considers the necessary steps to creating a collaborative and inclusive atmosphere. The presenter underscores that, as with any team, co-production projects require diverse communication pathways and a safe and comfortable environment for each person. Lawson asserts that researchers must evolve into co-facilitators as investigation methods move away from classical hierarchical structures. He provides necessary considerations for creating a co-production project before the Q&A.

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This is a joint presentation by the World Autism Organisation and ARI.

In this webinar: 

0:00 – World Autism Organization Introduction
3:25 – ARI Introduction
5:10 – Australian Autism Cooperative Research Center (CRC)
6:08 – Nothing about us without us
7:01 – Traditional methodology
9:02 – Participatory methodology
10:20 – Co-researching together
11:30 – Informative video: What is co-production?
14:44 – What Co-production isn’t
16:20 – Partnerships
18:05 – CRC co-production studies
21:31 – Process of autistic and non-autistic researchers coming together
25:15 – Who are autistic researchers?
26:56 – Communication
30:23 – Questions for researchers and institutions
32:11 – Informative video: Participatory vs. Co-production
35:03 – How to make co-produced researcher
37:20 – Remaining questions and classical hierarchies
40:10 – Q & A

What is co-researching/co-production?

Dr. Lawson introduces co-production as the absolute foundation of autism research (5:10). Co-production, he continues, exemplifies the saying “nothing about us without us” as it seeks to bring together autistic people and researchers in an equal exchange of ideas and investigative thought (6:08). The speaker defines traditional research methods where one researcher or team collects data from multiple subjects, analyzes said data, and informs the literature discussion on that topic (7:01). He recalls his own experiences as a subject in autism research studies, highlighting that results were rarely shared with him (8:04) and how he was paid in flowers instead of dollars, unlike non-autistic researchers (28:25). Participatory research methods, Lawson continues, include focus groups, participatory inquiry, and multi-stakeholder engagement (9:02). While this ensures that autistic voices are recorded and analyzed, such methods do not account for disparities in points of view or defined measurements between autistic individuals and researchers (9:50). 

Co-production/co-researching is a specific kind of participatory research where participants have control over a project’s agenda, process, questions, and actions. Any one person or group does not dominate such projects. Instead, every aspect of the investigation, including research topics, methodologies, data collection and analysis, and action item implementation, are done together – “It’s all a joint affair where no one person has power over any other” (10:20). Lawson provides a short video/pictorial explanation of co-production in the context of public services (11:30). The “principle that services should be co-owned by the state and citizens and that all people have something of value to contribute” is the foundation of this idea (12:40). These concepts apply to the co-production of public services as well as holistic and inclusive research methods. Within this mindset, the first question an organization (research or otherwise) must ask is no longer, “What do they (citizens/public) need from us?” but, “What can everyone give, and how can we all work together?” (14:44). 

Co-production research and what it entails 

The speaker outlines what co-production is not (15:00) and details recent co-research projects he has worked on, where individuals who shared their stories also participated in project design and carried out data collection and analysis (17:00). Lawson touches on the variety of needs and accommodation present in a group of autistic and non-autistic people and underscores the need for equity (vs. equality) (18:05). He introduces the Australian Autism Cooperative Research Center (CRC) and their academy which brings autistic adults together for three (3) days to learn the basic principles of research (i.e., terminology, methods, ideas, practice, dissemination, etc.). The speaker details the experiences of one cohort that attended the CRC Academy and created a visual dictionary of research terminology (19:45). During the academy stay, autistic adults and researchers were brought together on neutral turf for one day. Although this brought up the damage done to autistic people in previous research, where they felt used and hurt, the group was able to debrief their histories and create a new sense of meaning and relief in collaborative research (21:35). Lawson recalls that some non-autistic researchers were also scared to meet autistic people (perhaps scared to meet them as equals). 

Those present were separated randomly into four (4) groups, each with one researcher. The researchers were then allowed to share their thoughts about autism on pieces of paper, and those were ranked by the group (22:40). This was a very telling exercise, Lawson continues, because “until you know how you see and feel about autism yourself, working in research with autistic people is going to be a challenge because you may not have those positive attitudes that we need to be bringing in.” (23:15). Following this exercise, autistic individuals discussed what they feared would negatively impact their research. This provided a practical understanding of what each individual needed to perform best (i.e., need to read ahead, no video, just audio, sensory support, thinking time, etc.). Given such open discussions, some non-autistic researchers could state that some of those things also happen to them. Still, they had never had an opportunity to share such preferences with a team (23:30). Lawson highlights that, in reality, all teams need to work these things out. Accommodation needs vary significantly from person to person, which is true for any team (26:00). 

Accommodations, communication, and inclusivity 

The speaker notes that autistic researchers come in all shapes and sizes and details how the academy considers individual needs to create the most comfortable circumstances for the whole team. This translates into built-in breaks and thinking time in meetings and various communication devices and options, among other things. The needs of autistic researchers must be accommodated as they bring enriching perspectives, authenticity, and credibility to research in ways not available if they are included (25:15). Lawson highlights communication as a primary avenue of inclusivity and asserts the need to double-check and put into practice various forms of communication to accommodate an entire team (26:56). He discusses his experiences with co-production (28:25) and provides questions for researchers and institutions to ask themselves as they move toward a more accepting and inclusive future. He states that actions speak louder than words and urges viewers to consider what meaningful and inclusive partnerships with autistic people mean to them (30:23). 

Lawson presents another video on the differences between co-production and participation (32:11), where participation only sometimes translates to shared power and collaboration. Co-production, the video states, takes participation further as it involves everyone concerned with the subject in an equal partnership from start to finish. This is a considerable shift from traditional research methods and is challenging to achieve. However, it can be done, and so is something that researchers and institutions should aspire to accomplish (34:01). 

To realize co-production research, Lawson says, researchers and institutions must consider the following (35:03): 

• People: name everyone involved in the project
• Skills: who brings what to the table
• Environment: safe and comfortable for each person
• Communication: diverse communication devices and pathways for each need
• Continuity: everyone is always in this project together
• Community: in such an inclusive and understanding environment, communities innately form

Co-facilitators and the end of classical hierarchies 

Lawson asserts that collaborative co-production requires users (participants) to be experts in their own circumstances and capable of making decisions. Simultaneously, professionals must transition from being “fixers” to “facilitators” (36:36). He touches on remaining questions about co-produced projects (37:20) and recounts classical hierarchical research methods where participants had no power and shared themselves and their stories without any sense of connection to the studies (38:20). In the case of autism research, the speaker continues, it must be, “nothing about me without me” and autistic people need to be wholly involved from A to Z. Such inclusive and collaborative methodologies are already making an incredible difference in research in Australia and the UK. Lawson underscores the need to move away from classical hierarchical structures and reasserts that whatever conditions exist within a team must be accommodated (39:12). During the question and answer session (40:10), the speaker discusses ways to support higher needs individuals in co-production studies, recommendations for participatory research designs, what a coordinator(s) looks like in such collaborative and equitable settings (43:05), how to include non-verbal individuals in co-production (47:20), alternative forms of communication (50:00), informed consent (55:58), diversity limitations innate to such studies (58:05), and more.