Issues Arising From “Outside-In”Autism Research and Organziations

Filed Under (Inclusion, Research) by Estee on 13-09-2012

Attending IMFAR for me this year raised many more questions, if not affirmed some of my assumptions about the extent (or not) to which autistic individuals are involved in research as well as autism organizations. While more autistic people may be in attendance at conferences, or may sit as board members, issues about “tokenism” arise; to what extent do we enable autistic individuals to create a meaninful autism agenda? That is, who is establishing the questions about autism to be researched? Who is directing the goals of an autism organization?

Temple Grandin spoke at IMFAR at Toronto this year by webcam/Skype. She urged autism researchers to look at issues effecting autistic quality of life, rather than more studies on “face recognition.” Yet she did not acknowledge that many of these researchers are, a) not autistic or, b) do not practice emancipatory or participatory research. Was this done for politcial reasons, or was it a gentle nudge to send more accepted research paradigms in directions that may be of use to autistic people, or perhaps an oversight? By definition,

“Emacipatory research (that is research which seeks to alleviate oppression) is critical in exposing the mechanisms for producing, maintaining and leigtimising social inequities and domination.” (Ayesha Vernon, “Reflexivity: The dilemmas of researching from the inside” in The Disability Press.)

My assumption is that while Grandin is urging the researchers to reflect on what is important to autistic people, the model is more challenging at IMFAR which is largely based on a non autistic view of how autistic people think, perceive, function. The research was largely targetted to the “high-functioning” autistic population, likely, because this was the most effective, cost-efficient and timely way to complete the research projects. They did not employ emancipatory methods which may not use more common research designs. It is non autistic people largely determining what’s best for autistic people and the balance of power is clearly skewed — it is the researcher directing the goal of the reserach and the relationship of researcher-subject is established. Some quantitative research by autistic researchers has been presented at IMFAR, and we do need more in support of the issues and needs that are produced and articulated by people with autism. As non autistic people, charity organizers and researchers we have to acknowledge when we are looking from the outside-in, and consider changing our approaches in order to provide services that are directed by the autistic community.

Issues arise when thinking of involving autistic participants in establishing the research question, or the agenda of an organization. Sitting on boards with non verbal participants with significant challenges, non autistic members have to exercise patience and understanding with the length of time and the various outputs that enable an autistic person to participate, as an example. Some individuals communicate by typing very slowly, or using other text-to-speech devices. For others who do not have an organized communciation system, the issue of involvement and later, dissemination of the research that is useful to autistic people becomes complex. Some have worked around the issue by stating that the autistic with the more proficient communication system is at least accomplishing part of the task of inclusion. We have to work on offering solutions to participation and autistic direction.

As the founder of The Autism Acceptance Project, I experienced these tensions of working as a non autistic person in an autistic space and tried to resist controling the agenda, and admittedly while I sought a lot of direction from autistic people, this was very difficult to do. As an organized and fairly driven person, setting my own assumptions aside still requires me to slow down and think about my design of the TAAProject website: from to how to include autistic individuals in a way that they can direct the project while using my skills, and theirs, to developing the tools to perhaps target some of the issues that are barriers for all organizations that do not fully integrate and employ the needs and issues of our autistic community.

In addition to the intensive labour and time required to set up empancipatory research projects and the change the structure of autism organizations — both which seek to amelieorate the social oppression of autistic people — their is little capital out there for this. The larger autism charities focus more on causation research and are better capitalized as opposed to volunteer autism organizations more often led by autistic people (Arnold). So, if you are a researcher endeavouring to do this kind of research in autism, The Autism Acceptance Project would like to hear from you.

“Disability research should not be seen as a set of technical objective procedures carried out by ‘experts’ but part of the struggle by disabled people to challenge the oppression they currently experience in their lives.” (Oliver, 1992).

References:

Vernon, Aeysha (1997) Reflexivity: The dilemmas of reseraching from the inside, in Colin Barnes & Geof Mercer (eds.) Doing Disability Research (Leeds, UK; The Disability Press) 00. 158-176.

Preistly, Mark (1997) Who’s research? A personal audit, in Colin Barnes & Geof Mercer (eds.) IBID., pp. 88-107.

Arnold, Laurence, Participatory and Emancipatory Research: What’s The Problem, in Science 2.0, May 15, 2010.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.