Our “Stimpunks Guide to the NeurodiVerse” series surveys recent neurodiversity and disability related research. In this issue, we highlight how the vast majority of autism research is divorced from the lived realities of autistic people. We discuss how to move from “an ivory tower built on sand” to open + participatory + emancipatory + activist research.
Participants, including researchers, described the field of autism research as being largely out-of-touch with the realities of autistic people’s lives. They spoke of autism research as failing to address the autistic community’s priorities, instead being “more focused on things like genetics, or parent stress, that are quite stigmatising or… not vital to their day-to-day functioning” (06-RSp), or “addressing stuff that just does not matter. It’s just irrelevant. It just does not matter” (04-R). Participants felt that autism research often failed to improve the lives of autistic participants, who were “just… contributing their information, contributing their experiences to studies that… would never help them, in the end” (05-StF).Frontiers | From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research
Autism research is a systemic source of ableism. Researchers habitually dehumanize the people they claim to want to help.
The mainstream of autism studies is stuck in the eugenics and ableism of the 1940s and has aged as well as race science, which is to say, very badly. Many autism studies coming out today are ignorant and vile in their ableism like the race studies of old were in their racism. They are sickening to read. They read like bigotry, because they are bigotry. They steal the credibility of science to rationalize and exploit prior bigotries.
Autism research is incredibly flawed in an enormous number of ways. One example of how, is the fact that the sum total of all knowledge of Autism in academia is based on the work of two incredibly flawed men, both with incredibly flawed ideas and practice from the 1940s. Everything we know professionally and societally about Autism is underpinned by their work. As I’ve said so many times in talks and trainings the whole of Autism research is built on a foundation of sand.Autistic Masking: Kieran Rose a new Academic Paper
Autism research is an ivory tower built on sand. We desperately need a shift to an inclusive paradigm that promotes epistemic justice.
The findings presented here paint a picture of a field in flux, facing a shift from the “normal science” (Pellicano and den Houting, 2022) of the ivory tower to a more inclusive, real-world paradigm with community members valued as key agents in knowledge production.Frontiers | From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research
That inclusive, real-world paradigm is open + participatory + emancipatory + activist research. Below, we excerpt from a number of our favorite studies by way of introduction.
- From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action
- Doing it differently: emancipatory autism studies within a neurodiverse academic space
- Making the future together: Shaping autism research through meaningful participation
- Navigating Open Scholarship for Neurodivergent Researchers
- Towards Reproducible and Respectful Autism Research: Combining Open and Participatory Autism Research Practices
- Facts, Fire, and Feels: Research-Storytelling from the Edges
From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action
Hale contends that researchers who engage in cultural critique are committed to the research institution while activist researchers have dual commitments to the people and their political struggle and the academy (2006, p. 100). And it is this dual commitment that transforms the methodology beginning with the research topic and ending with the production of knowledge that is not only useful but transformative (Hale, 2001). Thus, activist research is an emerging research framework that shifts the focus from traditional knowledge production to commitment to working with others to produce transformative change. Traditional research methods such as ethnography, action research, and feminist research are situated within an activist research framework, leaving the means intact, but striving to change the ends.From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action
From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action
Some might question if it is ethical to engage in research that seeks transformation as a result, implying that neutrality in research should remain the goal. An activist research framework dismisses the idea that education research can or should be neutral but instead assumes that it is inherently political. The third aspect of this framework includes challenges to power; thus, neutrality or objectivity is not possible if one engages in activist research. As mentioned earlier, transformative change is not about forcing or demanding that the participants themselves change. Educational research situated within an activist framework acknowledges that political structures create systems of oppression for low-income children and students of color, and seeks to change those through policy and practice. As with any lofty goal, there are limitations in desiring transformative change but that does not mean the pursuit is any less worthy than those that guide traditional research.From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action
In traditional research, the researcher collects and analyzes the data. Even in qualitative participatory research that uses naturalistic forms of data collection, the researcher is often the sole interpreter of the data. Although we may ask our participants to review our analysis as a form of member checking, rarely do we have them collect, interpret, and analyze the data. In activist research the participants actively engage in data collection, interpretation and analysis.
Fine and Vanderslice state that the strategy of turning the participants into researcher created a major turning point for the staff, “by becoming researchers they changed their thinking about students, the community, and one another” (p. 210).From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action
In addition to challenging power, Fine and Vanderslice (1992) highlight how activist research works across multiple levels and sites of power and practice. They stress the importance of constructing theory at the school level (practice) and the district level (power):
As the participant researchers negotiated ideas for school restructuring, they were sent to the district and as the district proposed ideas they were sent back to the school, thus the levels of power and practice worked together as new questions and new ideas surfaced. Challenges to power must be explicit and encompass multiple sites if they are to support the participants desire for transformative action.From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action
In addition to exposing and challenging the political battles waged through education policy and reform efforts, activist research can provide youth with the experience needed to develop their critical consciousness and critical civic practice. Critical civic praxis is defined as “a process that develops critical consciousness and builds the capacity for young people to respond and change oppressive conditions in their environment” (Ginwright & Cammarota. 2007, p. 699). Based on the work of Freire, critical consciousness is achieved when the person realizes how oppression has limits their agency and ability to engage in resistance. Through critical consciousness, “the individual’s subjectivity transforms to foster new possibilities and capacities to see and act differently, proactively in the world—perceptions and actions geared toward promoting justice” (p. 699). Activist research can serve as a foundation for developing critical conscious in youth or an outlet for engaging in critical civic practice, or both.From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action
If the goal of research is to change the world, then the framework for conducting research must change. Research that produces knowledge and awareness about oppression will not change the lived reality of the oppressed. Those who traditionally have research done to or for them, will not be changed by research articles that are only accessible in academic journals. Research that maintains the status quo will not be sufficient to improve the future of marginalized youth and adults. If change is the goal, the way we conceptualize research must be restructured to work for change. This does not mean that activist research is a cure to all that ails society and will fix every problem facing today’s youth. Those who engage in activist research face challenges to reliability, validity, and acceptance from the larger research community (Hale, 2006) and although they strive for transformative action there is no guarantee that their work will bring about the outcomes they desire. Nonetheless, activist research provides a framework of possibilities for taking research out of halls of academia and into the hands and hopes of the people.From Theorizing in the Ivory Tower to Creating Change with the People: Activist Research as a Framework for Collaborative Action
Doing it differently: emancipatory autism studies within a neurodiverse academic space
A recent editorial in the major international journal Autism called for researchers to ‘acknowledge the need to address the everyday realities of autism’ by engaging with autistic people at all steps of the research process, including – but not limited to – establishing directions for research (Pellicano et al. 2018, 82). This ‘partnering’ of researchers with autistic people, together with a recognition of potentially unequal power dynamics between researchers and research participants, is characterised as participatory research (Waltz 2009; Fletcher-Watson et al. 2018)
However, meaningful inclusion of autistic voices in research tends to be the exception rather than the rule (Chown et al. 2017). This is methodologically and epistemologically problematic (Milton and Bracher 2013). Thus, drawing on an emancipatory as well as a participatory framework for autism research can increase the inclusion of autistic voices and contribute to a revision of the non-autistic voices. For example, Waltz (2009) claims that the accuracy of the findings is likely to improve when increasing the involve- ment of the participants in the process, because their insight will provide important information about their needs, priorities, and challenges, amongst other parameters. Research produced in this way is therefore of ‘higher qual- ity … (and more) relevant and applicable’ (Jivraj et al. 2014, 782). This statement applies to autistic people, researchers, and participants. For example, autistic researchers suggest that well-being for an autistic person would mean adapting the lifestyle to an individual’s own personal needs and desires, rather than being forced to mimic behaviours that can be confusing to them (Milton and Bracher 2013), a finding that may come less easily to a non-autistic researcher. The insight of autistic people is of importance if the research community is to have access into autistic ways of thinking (MacLeod, Lewis, and Robertson 2014), which we, and others, argue produces better research. As a result, an emancipatory framework can provide crucial contributions to the current understanding of autism.Doing it differently: emancipatory autism studies within a neurodiverse academic space
According to Stone and Priestley (1996) in one of the first descriptions of emancipatory approaches within disability research, an emancipatory approach refers to the inclusion of the participants within the research process in such a way that they benefit from it and it expresses their opinions and experiences. An emancipatory framework aims to challenge power structures within the research process (Stone and Priestley 1996) and aims for the equal representation of all ideas and beliefs. It is important to make space in our work for competing discourses as far as is possible.Doing it differently: emancipatory autism studies within a neurodiverse academic space
The innovative emancipatory design proved effective in giving voice to a group who have had little presence within the academic and medical large and internationally based participant sample. This article highlights both the importance of approaching autism from an intersectional perspective that takes greater account of context, and the unique contributions that autistic individuals can make to current understandings within autism research.“I Don’t Feel Like a Gender, I Feel Like Myself”: Autistic Individuals Raised as Girls Exploring Gender Identity
However, in keeping with its emancipatory philosophy, the negotiation of consent was treated as an ongoing consensual process rather than one event. Through the dialogues both during and after the data collection and analysis, participants had multiple opportunities to raise questions or concerns.“I Don’t Feel Like a Gender, I Feel Like Myself”: Autistic Individuals Raised as Girls Exploring Gender Identity
More autistic-led, participatory, and emancipatory research is needed to increase our understanding of how best to break down the barriers that constrain opportunities for autistic individuals and to understand autism not as a biological deficit, but as a form of ‘‘neurological queerness.’’
Perhaps the most important message arising from the emancipatory approach is the freedom of expression it offered to its participants. Through this, notwithstanding the mentioned points, participants not only reflected upon these aspects of their identities, but also highlighted the need to go beyond them and see the ‘‘dancer’’ and the ‘‘artist.’’ Just as autism research risks neglecting the experiences of autistic women, research such as this study, with its focus on ‘‘identities of disadvantage,’’ potentially risks neglecting the individual experience. Our participants ensured that this did not happen, and instead offered empowering accounts of the development and expression of their different identities, negative and positive.“I Don’t Feel Like a Gender, I Feel Like Myself”: Autistic Individuals Raised as Girls Exploring Gender Identity
Making the future together: Shaping autism research through meaningful participation
So, how do we go about building the community of practice we need to deliver these participatory methods? Some basics are already well known – for example, the importance of using respectful language to talk about autism and the need to create an enabling environment in which autistic people can contribute. Our series went beyond these basics, and identified five topics which are essential parts of developing a more participatory and collaborative research model in which autistic academics and autistic people in the community lead and / or partner in research projects.Shaping Autism Research in the UK
Making the future together: Shaping autism research through meaningful participation – Sue Fletcher-Watson, Jon Adams, Kabie Brook, Tony Charman, Laura Crane, James Cusack, Susan Leekam, Damian Milton, Jeremy R Parr, Elizabeth Pellicano, 2019
- Respect – how to respectfully represent lived experience in research
- Authenticity – how autism communities can shape a research agenda
- Assumptions – best practice in autistic leadership and community advocacy
- Infrastructure – how to support and encourage autistic academics and activists
- Empathy – how to build effective working partnerships
Participatory research enables meaningful input from autistic people in autism research. It is one important way to overcome barriers to effective translation and to ensure that research yields rel- evant benefits (Long et al., 2017).
By participatory research, we mean incorporating the views of autistic people and their allies about what research gets done, how it is done and how it is implemented (Cornwall and Jewkes, 1995). A key principle of participatory research is the recognition, and undermining, of the traditional power imbalance between researcher and participant (Nelson and Wright, 1995).
Another key feature of participatory research is inclusiveness including adapting the research environment, methodology and dissemination routes to permit the widest and most accessible engagement, or engagement from specific groups (e.g. non-speaking autistic people and people with additional intellectual disabili- ties – see Long and Clarkson, 2017). Participatory research is ethically informed by the values of the community, for example, in the selection of research questions and study objectives. Moreover, input from this community can improve the quality of research methods, contextualise findings within real-world settings and thereby enhance the translation of findings into practice (Carrington et al., 2016; Grinker et al., 2012; Parr, 2016; Parsons and Cobb, 2013). However, there is evidence that this engagement is not yet prevalent in the field.Making the future together: Shaping autism research through meaningful participation – Sue Fletcher-Watson, Jon Adams, Kabie Brook, Tony Charman, Laura Crane, James Cusack, Susan Leekam, Damian Milton, Jeremy R Parr, Elizabeth Pellicano, 2019
The participatory approach is a crucial element in all future autism research. A body of literature exists on its principles, practices, and significance.26–33 Anything that will truly help needs to be co-designed, developed, and evaluated with the involvement of autistic people. It has positive implications for the wider research agenda, in particular when established non-autistic autism researchers collaborate meaningfully with autistic scholars. We need approaches that value and center autistic voices, experiences, and expertise.
As participants, autistic people can correct misperceptions regarding concepts developed by autistic communities, researchers, and scholars, including neurodiversity and the neurodiversity paradigm,34–36 the double empathy problem,37 autistic inertia,38 monotropism,39 hyperfocus,40 and autistic space.41 We can offer insights on the therapeutic and empowerment value of self-help activities and the positive aspects of engaging in intense interests, as well as introducing emerging ideas such as sensory trauma,42 the co-creation of extended autistic families, and community-based mentor- ing.43 These concepts have implications for clinical research, including early intervention,44 and can lead research to new, more effective directions.Autistic Perspectives on the Future of Clinical Autism Research | Autism in Adulthood
Navigating Open Scholarship for Neurodivergent Researchers
There has been a recent shift towards the use of Universal Design for Learning (UDL) (i.e., an approach to teaching highlighting that academics/tutors should be proactively, not reactively, inclusive by making adjustments to their teaching without students having to disclose their disability to student disability services) in higher education (Burgstahler & Cory, 2010). UDL has several benefits: by offering a more flexible and inclusive practice, there is no need to disclose one’s disability, irrespective of student status (Clouder et al., 2020). In addition, making the assumption about the student’s intention based on your interpretation of their behaviour can be damaging for neurodivergent students’ self-esteem. University staff should recognise the different manners in which students may communicate and contribute, whilst being open to collaborating with students to find suitable approaches. Put simply, it can be described as neurodiversity involvement for pedagogy.Navigating Open scholarship for neurodivergent researchers | FORRT – Framework for Open and Reproducible Research Training
Towards Reproducible and Respectful Autism Research: Combining Open and Participatory Autism Research Practices
Concerns have also been raised about the quality and rigour of autism research. For example, researchers have highlighted key omissions in the reporting of research, such as failures to declare conflicts of interest (Bottema-Beutel & Crowley, 2021) or the presence of adverse events (Bottema-Beutel et al., 2021). Concerns have also extended to the low standards underlying evidence-based practice (Bottema-Beutel, 2023) as well as replication failures (Gernsbacher & Yergeau, 2019). As Dawson and Fletcher-Watson (2021, p.1) note, the standards of research quality and ethics have not been applied to autism research to the extent that they should, which has “profoundly impacted how autistics are regarded and treated”.
Two potential solutions have been proposed in relation to these aforementioned issues. The first solution regards greater involvement of the autistic and broader autism communities in research: in identifying research priorities, in deciding the design and conduct of research, in analysing and interpreting research findings, and in disseminating research more broadly (e.g., Pellicano et al., 2014). In essence, this solution involves shifting the traditional power balance in research from autism researchers to the autistic and broader autism communities. Participatory approaches such as these are thought to lead to better quality research that is more easily translated into practice (Balazs & Morello-Frosch, 2013; Forsythe et al., 2019).
The second solution regards greater openness and transparency in the reporting of research (Hobson, Poole, Pearson & Fletcher-Watson, 2022). Open research is an umbrella term for several practices, underpinned by a desire for the products and processes of research to be accessible to those outside of the original research team (Munafo et al., 2017). Open scientific practices are closely aligned with efforts to improve research reproducibility, and reduce the risk of grey research practices, such as hypothesising after results are known (HARKing; Kerr, 1998), and over-analysing data (“p-hacking”; Simmons et al., 2011).
In this paper, we discuss how combining participatory and open research practices may go some way toward addressing key issues inherent within autism research. First, we define both open research and participatory research. Then, we outline three key principles for autism researchers striving to make their work more open and participatory: (1) the need for adequate expertise and infrastructure to facilitate high quality research, (2) the need for a greater degree of accessibility at all stages of the research process, and (3) the need to foster trusting relationships between the autistic and research communities. Throughout this paper, we draw on examples from literature both within and outside the autism research field, and we conclude with reflections on how this may foster an autism research culture that better serves the autistic and broader autism communities.PsyArXiv Preprints | Towards Reproducible and Respectful Autism Research: Combining Open and Participatory Autism Research Practices
Facts, Fire, and Feels: Research-Storytelling from the Edges
For more, visit our four part series on autism research: “🗂 Facts, Fire, and Feels: Research-Storytelling from the Edges“.