Participatory Research With Autistic People:

Bridging the Double Empathy Divide Through Collaboration

This paper was originally submitted as part of the course work for Anthropology 9003A – Collaboration in Anthropology, taught by Dr. Andrew Walsh. It is a literature review of participatory research methodologies in Autism research.

In recent years there has been a call to democratize research, with many authors arguing that participatory research is more likely to produce results that are ethical and relevant to participating communities (Baum, MacDougall, and Smith 2006, 3; Cornwall and Jewkes 1995, 1667; McDonald 2017, 11; Milton, Mills, and Pellicano 2014, 2650; Mogensen 2010, 124-127; Pellicano and Stears 2019, 6; Pellicano, Ne’eman, and Stears 2011, 769). Despite this, the field of autism research has lagged behind. There has been little attempt to access the perspectives of Autistic people, and even less attempt to include Autistic people in setting research priorities (Block 2015, 354; Browning, Osborne, and Reed 2009, 36-39; Fletcher-Watson et al. 2019, 944; Healy, Msetfi, and Gallagher 2013, 224, 227; Howard, Katsos, and Gibson 2019, 1874; Mogensen 2010,60-64; Nicolaidis et al. 2019, 2011; Weksler-Derri, Shwed, and Davidovitch 2019, 1-2). Many of the challenges to participatory autism research do not stem from Autistic participants specific impairments, but rather from the social context of disability as an othered category (Nicolaidis et al. 2019, 2016; Reid-Cunningham 2009, 100).

Some of the resistance to participatory research with Autistic people stems from deeply entrenched ideas about our capacities rooted in deficit based models of disability (Milton 2014, 795; Mogensen 2010, 61; Singh and Bunyak 2019, 796). As conceptualizations of autism have shifted from viewing it as a deviant pattern of thought and behaviour towards a search for bio-medical causes, deficit models of the disability have taken on an increased authority (McGuire 2016, 26- 102; Silberman 2015, 261-353; Solomon 2010, 243). Solomon argues that this perceived authority is further entrenched by the use of technology which is presumed to be separate from human biases (Solomon 2010, 251). Autistic people, and activists from within the broader Disability Rights Movements, have argued for the adoption of a social model of disability. According to this view disabilities are best understood as socially constructed categories, framed within broader contexts (Cornwall and Jewkes 1995, 1670; Mogensen 2010, 38-51; Reid-Cunningham 2009, 99-101; Vincent et al. 2017, 302; Solomon 2010, 246-248).The conflict between these models has given rise to divisions within the wider autism community, with Autistic people expressing distrust of both academic researchers and of mainstream autism organizations. Autistic activists, myself included, have called on researchers to take community priorities and perspectives into account when setting research agendas (Autistics 4 Autistics Ontario 2019; Carey, Block, and Scotch 2019; Devlin et al. 2017).

Participatory research methodologies, in use since the 1940s, have been developed in response to similar dynamics between researchers and other marginalized groups. In many ways these appear to be a natural fit for addressing this divide (Baum, MacDougall, and Smith 2006, 3; Cornwall and Jewkes 1995, 1667-1670; Howard, Katsos, and Gibson 2019, 1874; McDonald 2017, 12; McDonald and Raymaker 2013; Milton 2014, 800; Pellicano, Dinsmore, and Charman 2014, 2-9; Pellicano and Stears 2019, 6).They saw significant gains in acceptance in the 1990s as researchers began to recognize their usefulness in addressing health disparities, both in lower income countries, and with marginalized populations within richer states (Baum, MacDougall, and Smith 2006, 3; Cornwall and Jewkes 1995, 1667-1670; McDonald and Raymaker 2013, 2166; Nicolaidis et al. 2019, 2008).

Central to participatory research is the deliberate shifting of power away from researchers and their institutional backers to local communities, and the direct participation of community members in all stages of the research process (Arnstein 1969, 217; Baum, MacDougall, and Smith 2006, 2-3; Biggs 1989, 31-32; Cornwall and Jewkes 1995, 1667-1688; Fletcher-Watson et al. 2019, 943; McDonald 2017, 11; McDonald and Raymaker 2013, 2171; Nicolaidis et al. 2019, 2011). In order to accomplish this, researchers must be conscious of the power dynamics at play between themselves and the communities they work with. It is not enough to assume that employing a participatory methodology alone will eliminate disparities. Researchers must be prepared to be both flexible and reflexive (Baum, MacDougall, and Smith 2006, 3; Mogensen 2010, 119-120, 136-138; Nicolaidis et al. 2019, 2011; Pellicano, Ne’eman, and Stears 2011, 769; Vincent et al. 2017, 304; Weksler-Derri, Shwed, and Davidovitch 2019, 3).

A diagram showing stages of participatory research arranged in a circle. Two groups of people are shown. Researchers have knowledge of research design and access to institutional resources. The Community Members have expperiential knowledge. Arrows leading into the research design stage indicate that researchers seek community input while community members have a question or issue they want studied. Intertwined arrows lead from Research Design to Data Collection. Researchers Ensure that recruitment and data collection meets ethical and accademic standards, while community members ensure that the study meets community priorities and that the recruitment is effective and non-exploitative. The intertwined arrows lead from data collection to data analysis. Researchers provide knowledge of academic theory and assist community members in building capacity. Community members provide insignt and context that might otherwise be missed. The arrows lead from data analysis to knowledge translations. Researchers ensure that knowlege is presented in a rigorours way while community members ensure that knowlege is presented in nan accessible way. The arrows lead from knowlege translation to action. Researchers publish findings, and community members publicise findings to the broader community. Arrows lead from action to reflection on results. Researchers use findings to inform future research while community members use findings to guide policy and action. The circle is completed indicating that reflection on results may prompt more questions and begin a new cycle.
A diagram showing stages of participatory research arranged in a circle.

Flexibility allows researchers to respond more readily to participants, and often leads to research findings that are more relevant to local communities, and therefore more likely to lead to effective action (Baum, MacDougall, and Smith 2006, 2; Cornwall and Jewkes 1995, 1668; Fletcher-Watson et al. 2019, 945; McDonald 2017, 12; Pellicano, Dinsmore, and Charman 2014, 10). To achieve this flexibility, participatory research methodologies enable participants to represent their experiences and perspectives in their own terms. Researchers may choose a variety of qualitative and quantitative methods depending on what best suits the participants needs.This allows for the utilization of methods such as art and storytelling, which is of particular relevance when working with autistic communities. Visual methods allow for the expression of ideas that are difficult to get at with verbal language, and methods such as photo-voice, talking mats, or concept maps may be more accessible for Autistic people with barriers to spoken language (Baum, MacDougall, and Smith 2006, 3; Cornwall and Jewkes 1995, 1667-1671; Mogensen 2010,117-164; Nicolaidis et al. 2019, 2008-2009; Vincent et al. 2017, 305).

Increasingly, the push for more participatory research has come from within the Autistic community. Autistic adults report significant dissatisfaction with current research, linked to a perception that researchers do not respect or value Autistic adults lived experience and expertise (Pellicano, Dinsmore, and Charman 2014, 4, 7). Several authors point to a misalignment between the priorities of researchers and those of a majority of Autistic people (Baggs, 2016; Devlin et al. 2017; Fletcher-Watson et al. 2019, 943; McDonald 2017, 12; Mogensen 2010, 34; Pellicano, Dinsmore, and Charman 2014, 5, 9; Vincent et al. 2017, 301). There also appears to be a significant disconnect between what researchers view community engagement to be, and what the Autistic community want out of that engagement (Fletcher-Watson et al. 2019, 944; Pellicano, Dinsmore, and Charman 2014, 4, 7).

Autistic activists and academics have been critical of researchers for contributing to stigmatizing stereotypes of Autistic people and legitimizing harmful interventions (Amythest Schaber 2014; Baggs, 2016; Devlin et al. 2017, Fletcher-Watson et al. 2019, 948; Kim 2013; Milton 2014, 796; Milton, Mills, and Pellicano 2014, 2650; Vincent et al. 2017, 306). Stereotypes such as the belief that Autistic people lack empathy, as well as “crude terms such as an ‘extreme male brain’” have been particularly troubling for their dehumanizing implications (Milton 2014, 796).These stereotypes impact researchers views of Autistic people, potentially biasing research outcomes. They also do significant harm to Autistic people when research which uncritically reinforces such stereotypes is picked up by the media (Baggs, 2016; Fletcher-Watson et al. 2019, 948; Milton 2014, 796; Milton, Mills, and Pellicano 2014, 2650; Vincent et al. 2017, 306).

The first challenges to these stereotypes have come from Autistic autobiographies. While most early autobiographies were non-academic, a few academics, such as Dawn Eddings Prince, have since written about their lived experiences of autism. These works have had an important impact on broader social understandings of Autistic people (Mogensen 2010, 51; Prince 2010, 58; Vincent et al. 2017, 305). More recently Autistic academics have undertaken the task of writing theoretical work, rooted in the social model of disability. In Authoring Autism: On rhetoric and neurological queerness, Yergeau challenges the assumptions that Autistic people are non-rhetorical and incapable of self reflection. She exposes the dehumanizing impact that such stereotypes have on Autistic people. Damian Milton is another academic who has written extensively on the subject of Autistic people’s expertise (Milton 2012; Milton 2014; Milton, Mills, and Pellicano 2014; Yergeau 2017).

Self Portrait

In her seminal sociology thesis, Judy Singer outlined the emergence of the Autistic Rights movement and developed the concept of Neurodiversity (Singer 2017). Autistic activists and academics alike have built on this early work using theoretical perspectives to inform the current Autistic Rights and Neurodiversity movements. These movements have in turn, produced contributions to theory, expanding on and nuancing concepts of neurodiversity, intersectionality, and power (McGuire 2016,11-19; Singer 2017, 9-22; Strand 2017).

London Autistics Standing Together presents the following current definition of Neurodiversity:

“Neurodiversity is simply the natural variation of human brains and minds. The neurodiversity paradigm is a way of thinking that sees different minds as a natural and valuable aspect of human diversity. This way of thinking emphasizes the social power structures that exist around neurological differences, and the ways in which social barriers and inequalities put people with disabilities at a disadvantage. This perspective does not deny that aspects of various neurological differences can be unpleasant, and can include specific impairments. However, the neurodiversity paradigm looks at how society is organized in ways that make some things less accessible for certain people.”

(Devlin et al. 2016)

In response to the stereotyping of Autistic people as lacking “theory of mind” there has been a move reframe communication failures as difficulties in translating between world views. Some of these differences are shaped by significant differences in sensory perception. There is growing evidence that neurotypical people struggle to empathize with Autistic people, which Milton describes as the “Double empathy problem” (Baggs 2016; Fletcher-Watson et al. 2019, 949; Milton 2012,883-887; Milton 2014, 795-800).

While these contributions have clearly demonstrated that Autistic people are capable of advanced theoretical and reflexive thought, some researchers continue to be resistant towards embracing participatory research, fearing that the inclusion of Autistic perspectives will politicize their research and lessen its validity (Cornwall and Jewkes 1995, 1667; Fletcher-Watson et al. 2019, 944; Pellicano, Dinsmore, and Charman 2014, 3, 9; Vincent et al. 2017, 306). In response, several authors have pointed out that no researcher is free of bias. The pervasiveness and normalization of deficit models of disability may make it more difficult for researchers to identify their biases, and may make them more vulnerable to being influenced by inaccurate stereotypes (Cornwall and Jewkes 1995, 1674; McDonald and Raymaker 2013, 2169; Pellicano, Dinsmore, and Charman 2014, 10; Vincent et al. 2017, 306). This is particularly true for researchers who are not trained in examining issues of power and privilege (Fletcher-Watson et al. 2019, 943, 950; Nicolaidis et al. 2019, 2012; Pellicano, Dinsmore, and Charman 2014, 9; Pellicano, Ne’eman, and Stears 2011, 769).

Several authors have argued that participatory research might actually lead to higher validity in results. This is because Autistic collaborators are able to give greater context with which to interpret data and may contribute insights that research teams with less diverse perspectives would otherwise miss. This assertion has largely been born out by the emerging literature on participatory research with Autistic communities (McDonald 2017, 11; McDonald and Raymaker 2013, 2171; Milton 2014, 798; Vincent et al. 2017, 306-307).

Milner et al. illustrate the potential for more conventional methods to re-inscribe existing biases. They carefully selected methods in order to better access Autistic women’s expertise and “avoid the circularity of relying on questionnaires and tasks derived from largely male-biased autism research” (2019, 2390). Other authors have likewise commented on the potential for non-participatory methodologies to contribute to confirmation bias (Baggs, 2016; Block 2015, 353; Fletcher-Watson et al. 2019, 949; Howard, Katsos, and Gibson 2019, 1871; McDonald 2017, 12). When non-Autistic researchers discount Autistic participation they cut themselves off from these important avenues of insight, as is illustrated throughout the existing academic and activist literature. Participatory methodologies may offer a way for researchers to communicate more effectively with Autistic people (Baggs, 2016; Fletcher-Watson et al. 2019, 948-949; Mogensen 2010, 52; Prince 2010, 57).

A small but growing body of research points to the success of these methodologies. Several collaborations have gone on to include Autistic collaborators as co-authors of academic articles and conference presentations (Block et al. 2012, 168-169; Fletcher-Watson et al. 2019, 945; Nicolaidis et al. 2011, 143-150; Nicolaidis et al. 2019, 2008; Vincent et al. 2017, 312). The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) have been pioneers in this field. Their approach has made significant strides in developing accessible data collection instruments (Nicolaidis et al. 2013, 761). The have found that the results from these more accessible instruments have “good to excellent internal consistency reliability” and “strong construct validity” (Nicolaidis et al. 2012, 761). Drawing on their collaboration over the course of multiple studies the organization has been able to develop guidelines to assist researchers in adopting more inclusive practices (Nicolaidis et al. 2019, 2009; Nicolaidis et al. 2011, 143-150; Nicolaidis et al. 2013, 762;) Other collaborations, while not always including Autistic people as coauthors have made significant contributions to mapping a way forward in overcoming the ethical and methodological challenges involved in translating participatory methodologies to Autistic contexts (Mogensen 2010, 141; Nicolaidis et al. 2019, 2008; Weksler-Derri, Shwed, and Davidovitch 2019, 2).

Two service dogs with a sign reading “Rights not Charity”. Image by LAST.

Many of the challenges involved in navigating participatory research in Autistic communities stem from a lack of consensus as to what defines the community whose participation researchers should be seeking. Unlike many other marginalized communities, Autistic people are often born to non-Autistic parents and may or may not be connected to broader Autistic communities. Even where Autistic people have come together to form vibrant sub-cultures members are often geographically dispersed and Autistic communities remain intimately intertwined with networks of non-Autistic family members and service providers. The voices of non-Autistic parents and services providers have traditionally been privileged in both research and policy, sometimes to the complete exclusion of Autistic people themselves. This has significant implications for both autism research, and policy because organizations led by parents often have different, goals to those held by the majority of the Autistic community (Carey, Block, and Scotch 2019; Fletcher-Watson et al. 2019, 950; McGuire 2016, 1-9, 177-185; Milton 2014, 800; Milton, Mills, and Pellicano 2014, 2650; Mogensen 2010, 6-8;Nicolaidis et al. 2019, 2008; Nicolaidis et al. 2012 b, 761; Pellicano, Dinsmore, and Charman 2014, 2; Pellicano 2012;Singh and Bunyak 2019, 799).

Not being aware of these divisions between various stakeholders can lead to studies which fail to adequately include Autistic voices, even when researchers set out with the intention of conducting participatory research. Examples of this include recent studies by Meza, Drahota, and Spurgeon, and by Garfield and Yudell (Garfield and Yudell 2019, 1145-1147; Meza, Drahota, and Spurgeon 2016, 793-794). In Garfield and Yudell’s study they stress the importance of including those “whose lives are directly impacted by the issues being researched”. Despite this, when listing categories of people included in their project team, they list “families, community activists, service leaders, ASD professionals, graduate students, and researchers”. Autistic people themselves are not mentioned. Furthermore there is no attempt to distinguish between the priorities of Autistic people and their families (2019, 1145-1147).

The resulting products of the research privilege services for families of Autistic children, echoing existing disparities between services available for families and services aimed at quality of life for Autistic people, and supports for Autistic adults (Clair 2018, 3-11; Garfield and Yudell 2019, 1149; Nicolaidis et al. 2011,143–150; Stoddart et al. 2013, 17). More disappointingly, language used in the study such as “individuals and families impacted by autism spectrum disorder” reinforces a stigmatizing deficit model (Garfield and Yudell 2019, 1144). This is disheartening given that other researchers, nearly a decade earlier, have consciously adopted more neutral language in published work (Mogensen 2010, 9-12; Nicolaidis et al. 2011,143–150).

Even when researchers narrowly define the community as Autistic people, there is significant heterogeneity and contested boundaries within the community. Several authors have noted impact of intersecting forms of marginalization on Autistic people, and some have written about how best to approach the question of self diagnosis. This is particularly germane given that formal diagnosis is frequently inaccessible to Autistic people who are multiply marginalized due to gender, ethnicity, language, or socio-economic status.(Brown, Ashkenazy, and Onaiwu, 2017, 128-130, 326-330; Garfield and Yudell 2019, 9; Healy, Msetfi, and Gallagher 2013, 223, 226; Howard, Katsos, and Gibson 2019, 1872; Milner et al. 2019, 2390, 2400; Singh and Bunyak 2019, 800; Solomon 2010, 249; Stoddart et al. 2013, 17; Weksler-Derri, Shwed, and Davidovitch 2019, 2). There are also questions as to how best to include Autistic people with communication barriers in research, and how to address minority viewpoints within the community (Baggs, 2016; McDonald and Raymaker 2013, 2166, 2170; Weksler-Derri, Shwed, and Davidovitch,3).

Vincent points out that researchers should not “automatically adopt a medicalized view of disability or perpetuate a system where certain groups remain invisible and voiceless” when accommodating disability (Vincent et al. 2017, 304). This needs to be balanced against the power differentials between researchers and participants who may be more vulnerable to coercive control (McDonald and Raymaker 2013, 2166-2170; Mogensen 2010 141-143; Nicolaidis et al. 2019, 2013-2017; Weksler-Derri, Shwed, and Davidovitch,3; Vincent et al. 2017, 304). It is not enough to focus research only on those Autistic people who are best able to advocate for themselves. Often those Autistic individuals who are the most vulnerable are also the most underrepresented and most in need of research into the social disparities which contribute to their vulnerability (McDonald and Raymaker 2013, 2170-2171). Nicolaidis et al. demonstrate that careful attention to accommodation can allow Autistic participants with communication or cognitive impairments to participate fully and consensually (Nicolaidis et al. 2019, 2011).

Several authors make recommendations for how best to accommodate Autistic people. This includes strategies for ensuring clear communication with participants (Fletcher-Watson et al. 2019, 946-947; Howard, Katsos, and Gibson 2019, 1873-1874; McDonald and Raymaker 2013, 2168-2169; Mogensen 2010, 128; Nicolaidis et al. 2011, 143–150; Nicolaidis et al. 2012, 762; Nicolaidis et al. 2019, 2011- 2013; Pellicano, Dinsmore, and Charman 2014, 5, 7; Vincent et al. 2017, 304), ensuring the accessibility of data collection instruments (Howard, Katsos, and Gibson 2019, 1874; McDonald and Raymaker 2013, 2168-2171; Mogensen 2010, 158; Nicolaidis et al. 2019, 2013-2014), adjustments to the physical environment(Fletcher-Watson et al. 2019, 947, 950) and accommodating co-occurring impairments (Mogensen 2010, 158; Nicolaidis et al. 2019, 2011). Accommodation can also extend to the selection of more accessible methods (Howard, Katsos, and Gibson 2019,1873-1875; McDonald and Raymaker 2013, 2168-2170; Mogensen 2010, 117, 121-128, 159-164; Vincent et al. 2017, 305).

Respect is paramount to designing accommodations that allow participants to engage in research without feeling that they are being belittled, and researchers must be willing to be guided by community member’s expertise. This can include seeking the community’s advice on which accommodations are useful and respecting community choices and preferences when it comes to language and terminology. Above all researchers need to be willing to share power, and have the humility to take feedback seriously, adjust their methods in response to new understandings, and be willing to apologize for missteps (Fletcher-Watson et al. 2019, 947, 950; McDonald and Raymaker 2013, 2166, 2168; Mogensen 2010, 129, 137-138; Nicolaidis et al. 2011,143–150; Nicolaidis et al. 2019, 2011-2014). Nicoladis et al. take this further, to disrupt the assumption that accommodations are special considerations that apply only to disabled people when they point out the ways in which Autistic partners accommodated neurotypical team members (2011, 143–150).

A photo of Gawain, the author’s service dog.

Fletcher-Watson et al. highlight that it is important to keep the work Autistic people do to accommodate researchers in mind when researchers find themselves in difficult positions due to institutional barriers (Fletcher-Watson et al. 2019, 949). Participatory research often places researchers in a position of having to navigate institutional barriers, even at the cost of career advancement. This is because participatory methodologies can take a greater investment of time and funding and may require deviation from existing guidelines and methods (Fletcher-Watson et al. 2019, 948-949; Howard, Katsos, and Gibson 2019, 1874; McDonald and Raymaker 2013, 2169 2170; Mogensen 2010 142; Nicolaidis et al. 2019, 2009-2017; Nicolaidis et al. 2011,143–150; Pellicano, Dinsmore, and Charman 2014, 3, 10; Pellicano and Stears 2019, 6-7; Vincent et al. 2017, 307; Weksler-Derri, Shwed, and Davidovitch 2019, 2). It is important to remember that it is not only researchers who must “risk disagreement and discomfort” or “demands on them asking something they cannot easily do”, but that Autistic participants must also take risks in engaging with researchers (Fletcher-Watson et al. 2019, 949; Nicolaidis et al. 2011, 143–150). Historically those risks have not paid off for Autistic people, and instead have contributed to harm to the Autistic community (Devlin et al. 2017; McDonald 2017, 12; McDonald and Raymaker 2013, 2166-2171; Mogensen 2010, 34; Pellicano, Dinsmore, and Charman 2014, 2).

Given this rocky history it is understandable that Autistic people would hesitate to trust autism researchers. Milton raises the question of the extent to which non-Autistic researchers can truly understand Autistic experiences given their neurological differences, and the inherent sensory limitations most non-Autistic people experience when compared to many Autistic people’s intensive sensory perception (Milton 2014, 796). As autistic academics make headway in finding a place in academia, there is a justified call for their voices to be centred in autism research. There is real potential to develop autism research beyond the study of Autistic people as objects to a study of autism that is meaningfully informed by Autistic perspectives (Milton 2014, 796; Pellicano, Dinsmore, and Charman 2014, 5; Reid-Cunningham 2009, 103, 108).

When discussing Indigenous Research Methodologies, Joseph Gone cautions, “And so, one concern I have is by saying that “this is IRMs,” what we’re really saying is “and you White people don’t know this. This is ours” … And you become [that which] happens to many Native American Studies programs is you’re really, really marginal in the academy” (Gone 2019, 51). I would like to raise a similar note of caution here, albeit one directed at the etic, rather than the emic side of the knowledge divide. While the call for Autistic researchers to be centred is a just one, and it can certainly be said that Autistic people are better equipped to understand their lived experiences than non-Autistic researchers, it is equally important that non-Autistic researchers do not leave the work of creating more just research to Autistic researchers alone (Fletcher-Watson et al. 2019, 944; McDonald 2017, 11; McDonald and Raymaker 2013, 2170).

Despite recent advances in participatory research there are still many gaps in the current body of literature. There has been little research done with Autistic adults. What has been done has often fallen short when it comes to understanding the impact of race, gender, ethnicity, and socio-economic status on the lives of Autistic people. In addition there is need for further development of methodologies that allow for the participation of Autistic people with significant communication barriers, language differences, or cognitive differences (Brown, Ashkenazy, and Onaiwu, 2017, x, 5; Fletcher-Watson et al. 2019, 948, 950; Garfield and Yudell 2019, 10; Garfield and Yudell 2019, 10; Howard, Katsos, and Gibson 2019, 1874; Milner et al. 2019, 2400-2401; Nicolaidis et al. 2019, 2008; Nicolaidis et al. 2011, 143–150; Nicolaidis et al. 2012, 766; Pellicano, Dinsmore, and Charman 2014, 2, 7; Singh and Bunyak 2019, 797-804; Solomon 2010, 248; Vincent et al. 2017, 303; Weksler-Derri, Shwed, and Davidovitch 2019, 3). As has occurred with participatory research in other communities, researchers often find themselves working with community leaders who are best equipped to engage with them. It will take time and effort to build the capacity within the Autistic community and to build infrastructure within academia, in order to allow researchers to better engage with segments of Autistic communities who have less access to resources (Nicolaidis et al. 2011, 143–150; Tang 2007, 241-248).

As participatory research makes strides towards closing in these gaps, it is important for researchers to ensure that participatory research remains more than a buzzword (Cornwall and Jewkes 1995, 1673; Fletcher-Watson et al. 2019, 944, 948; Nicolaidis et al. 2019, 2016). This concern may become more pronounced in the Canadian context moving forward. The recently proposed Accessible Canada Act will require federally funded agencies to consult directly with Disabled people and has implications for federal funding (Employment and Social Development Canada 2019). Building on this, Canadian advocacy groups have called for meaningful, and not merely tokenistic input into both research and policy (A4A, 2019).

While Autistic researchers may possess insights and perspectives that neurotypical researchers do not, non-Disabled researchers have made meaningful contributions to the field of disability studies (Reid-Cunningham 2009, 108). Anthropologists are uniquely placed to continue to make meaningful contributions to the field of autism research. With the discipline’s focus on understanding ‘others’, anthropologists have skills that are greatly needed to translate knowledge between Autistic and non-Autistic experiences (Reid-Cunningham 2009, 108; Solomon 2010, 252) This dialogue between differing perspectives is where participatory research draws its strength. Both Autistic and non-Autistic researchers have a role to play in ensuring that autism research produces results that are ethical, relevant, and respectful of communities (Fletcher-Watson et al. 2019, 944; McDonald 2017, 12; McDonald and Raymaker 2013, 2169; Milton 2014, 796). It is through collaboration across differences that the field of autism research can move away from historical harms done towards a more just future.


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