Ontario Adult Autism Research and Support Network - OAARSN

Preface from the Author

I came to this work as a philosopher with great interest in the topic of the philosophy of disability and related questions of justice, which was the focus of my PhD completed in 2019. Learning more about Autism and how to generate positive social change remains an area of personal interest, and so I appreciated the opportunity to engage my research and philosophical skills to contribute to the good work done by the GSA. My goal in completing this project was to pursue the research questions identified by the GSA in such a way that would contribute to the ongoing conversation about the experience of adults with severe Autism and ways that we can better support people with Autism and their families.

The methodology I used in this project was to identify research articles that, whenever possible, were written in the previous 10 years and were available to the public, that is, open-access or shared by authors so that a reader can explore an article themselves should they wish to. Review articles, those that summarize the literature on specific topics, and articles of primary research were of particular interest to me. My search was not intended to be exhaustive or a systematic review of the literature, rather, I sought to find articles that directly responded to the research hypothesis: Adults with severe Autism are some of our most vulnerable citizens, not only because of their conditions but because of how those conditions have been perceived. I then synthesized and articulated the themes I found in what I read. Given my narrower focus and because I am a philosopher and not a clinician, I did not attempt to include certain aspects, such as the genetic background or causes of Autism, for example. I leave those topics to people better suited to the task. Neither did I seek to compare the nature and degree of vulnerability that adults with severe Autism face with what members of other groups experience. Rather, my goal was simply to highlight certain aspects of the vulnerability experienced by members of this group.

I learned a great deal through completing this project. Not the least of which is the extensive amount of literature that exists on the topic – even with my narrow focus I read several articles for each one I cited. I take away from this project a greater awareness of the diversity that exists within people who have Autism. Although I had known this previously, doing this research drew that out in many detailed ways for me. I also found the lack of research directly focused on adults with severe Autism eye-opening, and even concerning, since many policies are said to be evidence-based, while researchers recognize that the evidence directly about adults with severe Autism is lacking.

As I wrote these three short essays, related questions arose that I recognized worth pursuing but ultimately did not fit the scope of the project or required different expertise to address. I mention some of them here. The first is a closer look at the ways research can centre the lived experience of people with Autism and possible best practices that may be, or are being, developed to that end. The second is to investigate whether and how much consistency is lost when drawing from research studies that use a variety of different assessment tools to quantify symptoms of Autism, especially when comparing or combining their findings to make larger conclusions. And finally, while what is called the double empathy problem is a younger theory empirically, I am quite curious to see how it develops and the extent of it’s reach to challenge other assumptions made about people with Autism.

Catherine Klausen PhD
August 2021