Why Participatory Research is Better Research

What is Participatory Research?

Imagine an autism study where autistic people themselves determined the question to be asked, and worked with researchers to design the study methods, collect the data, and interpret the results. Such an arrangement is called participatory research. In participatory research, “control over the process and agenda…is handed over from the researcher to the participants... Participants also analyse and reflect on the information generated by the research process.” In this way of doing research, “the subjects of the research become involved as partners in the process of the enquiry, and…their knowledge and capabilities are respected and valued.”

What that means in practice varies depending on the project and the people involved. Participants may be more or less involved in each step of the research process. However, the fundamental principle is the same. Instead of experts imposing their views from the outside, researchers are facilitators who help people articulate what they know and believe, and involve them in putting their views to the test.

Researchers are beginning to involve people on the autism spectrum in researching their own condition. AASPIRE conducts community-based participatory research on healthcare, education, and other life outcomes for autistic adults. And more and more autistic researchers are joining Michelle Dawson in investigating autism.

Above: Types of involvement autistic people might have in research. From consultative on up can be considered “participatory research.” The image comes from this book chapter.

Why Participatory Research?

Psychology and neuroscience researchers learn many specialized skills necessary to do good studies:

  • Measure human behavior, physiology, or brain activity in detail and on very small time scales (as short as 1 millisecond). Doing so provides information one cannot get from direct observation.
  • Determine a test’s reliability (the likelihood that the same person will obtain the same result every time they take it) and validity (the test’s relevance to the real-world outcome it’s supposed to measure).
  • Choose an appropriate control group. For example, when researching the language skills of autistic children with global developmental delays, it may not be obvious whether to choose a control group with the same age, nonverbal reasoning age level, language skills, or overall level of development (so-called “mental age”). Each of these approaches has different strengths and weaknesses, and researchers learn which works best given their research questions and any practical constraints.
  • Learn a variety of statistical comparisons and choose the appropriate ones for the research questions being asked.

However, researchers do not receive training in:

  • Deciding what broad real-world behavior a specific measure represents. In my experience, researchers rely on their intuition, and that of their mentors.
  • Discovering and questioning the assumptions they bring to their research (e.g., that autism is a disease in need of cure, or that there is only one healthy developmental trajectory).
  • Learning what research questions are interesting, important, or have practical impact for people outside of their research field.
  • Recognizing and overcoming the blind spots that come from acculturating to an academic discipline (i.e., not asking questions that would be obvious to someone outside the discipline), or the “disciplinary fallacy” (thinking that a discipline has proved something that they have merely assumed). (In neuroscience, the most common disciplinary fallacy is the belief that the field has proven that the mind and brain are the same thing. In linguistics, it’s the belief that all language use is equally valid so long as it’s widely used, and it’s bad to be “prescriptive” about spelling or grammar. While these beliefs might be accurate, these fields have assumed them rather than tested and demonstrated them).

This lack of training in philosophical, ethical, and sociological issues impacting their work has practical consequences. Researchers’ priorities often do not match those of autistic people’s families, and are the opposite of autistic people’s. Both autistic people and their families agree that too much funding goes toward genetic research on what causes autism. Aside from the ethical problems with trying to eliminate a type of human from the gene pool, this research does nothing to improve the lives of autistic people and their families now. Much of the remaining research goes towards:

  • Identifying autism as early as possible;
  • Developing interventions that make autistic people look “normal”;
  • Inventing drugs to curb behavior that causes problems for parents and teachers, such as meltdowns, self-injurious behavior, or loud and highly visible stimming.

By contrast, autistic people want to know:

  • What causes sensory issues (especially overload and processing difficulties, such as difficulty understanding speech), and how to ameliorate them.
  • How autistic people learn and what educational approaches help the most.
  • How social stigma about autism affects autistic people’s development and mental health; studies on behavior problems, anxiety, and depression that take social stigma into account.

They also want to see some practical, “R&D” type research:

  • Development of cheap, effective augmentative and alternative communication (AAC) to help non-speaking children communicate as well as possible.
  • Developing effective housing and employment options, and accessible public spaces.

Millennials make up an even larger generation than baby boomers, and are the generation for whom autism diagnosis first took off. Yet very little research examines autistic adults, and much of this consists of longitudinal, observational “outcome” studies of earlier generations, rather than more controlled studies on what causes these outcomes. (Drexel Autism Institute’s research is a notable exception).

Image from Spectrum News, “Social skills, contentment evade adults with autism.”

In the image above, notice the lack of nuance common in “outcome” research. Outcomes are divided (based on neurotypical assumptions and expectations) into “good,” “poor,” or “mixed” outcomes. Measurements focus on scores on skills, such as language, IQ, and adaptive functioning, or on changes in autistic traits, such as repetitive behavior.

Image from Spectrum News, “Young adults with autism flounder in face of service gaps.

What research we have tells us that many adults are undereducated, unemployed, and isolated, but not how to improve the situation. More informed parents and teachers join autistic adults in calling for more research on adulthood.

I’m not the first to note the profound costs of failing to include autistic people in developing research priorities. But I want to emphasize that participatory research can be higher quality as well as more useful. Look back at the list of strengths and weaknesses of researchers. Autistic people’s strengths make up for researchers’ weaknesses, while researchers’ statistical and methodological expertise allows them to test hypotheses in ways autistic laypeople couldn’t do alone. It’s as if they were made for each other.

Of course, autistic people can be researchers. In fact, they make ideal autism researchers. Possessing the strengths of both autistic people and researchers prepares them to conduct studies that are both useful and rigorous. But currently, most researchers on autistic brains and behavior are not autistic. (Notable exceptions include Michelle Dawson and Hannah Belcher). Moreover, the strengths and weaknesses that enable someone to become a researcher may not be typical of the general autistic population (or any population, for that matter!). Thus, participatory research needs to include collaboration between neurotypical researchers and autistic laypeople.

The Current State of Participatory Research

This post was initially drafted several years ago, in frustration at the yearly International Meeting for Autism Research (IMFAR) conference. For several years, researchers had expressed awareness of the need for more research on autistic adults and more practical research focused on autistic peoples’ priorities. However, the lineup of talks had not shifted in that direction. Since, an increasing number of autistic researchers have been changing the conversation about autism. To discuss their findings and the significance of their work would take several posts.

There is still much room for research to become more participatory. It continues to be difficult for researchers to involve people who do not speak, or cannot speak communicatively at will — a significant part of the ASD population. Given the need for researchers to explain the research process and help people articulate their views, the language disabilities that often come with autism impose an additional challenge that researchers are still learning to deal with. Those who are least independent and deemed “low functioning” are also under-represented in research. Autism research is dominated by the perspectives of those who are vocal and well educated. Participatory autism research will reach its full promise when a truly representative sample of volunteers has the chance to influence the research process. Then, we will be able to have a complete view of autism, inside and out.

References:

Emily Willingham (2012). What do autistic people want from science? Forbes Nov. 1, 2012.

Further Reading:

Anne M. Roux, Paul T. Shattuck, Jessica E. Rast, Julianna A. Rava, & Kristy A. Anderson (2015). National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.

Michelle Dawson’s blog, The Autism Crisis.

--

--

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store