Restorying Autism: My Practicum Experience

From the CESI Blog Archive - August 2023

The following article was written by Zahra Husein who completed her graduate practicum in Applied Social Psychology with the Re-Storying Autism in Education partnership under the supervision of CESI’s Manager of Community Engaged Teaching and Learning in the Summer of 2023.

About me

I completed my BAH in Psychology at the University of Guelph before moving onto my current Master’s program in Applied Social Psychology. During my undergraduate degree I had the opportunity to take some highly stimulating courses such as Historical and Critical Perspectives on Psychology and Qualitative Methods. These two courses as well as my interest in philosophy shaped who I am as a researcher. My current research interests include qualitative methods, mental health, and neurodevelopmental disabilities such as autism.

While Psychology offers many valuable insights, not all experiences are represented in existing research. As an Autistic woman of colour, I often wondered why my experience was not reflected in the literature I read on autism. In part, this inspired me to research topics related to autism from a critical perspective. Being critical entails questioning what we may take for granted. For example, autism is often described in terms of deficits. We are seen as having communication deficits rather than differences. By reframing these scripts, we are taking social action to make space for Autistic acceptance.

Boys are four times more likely than girls to be diagnosed as Autistic (CDC). Children are also more likely to be diagnosed than adults (CDC). I was in my early 20s when I was diagnosed. I went into the assessment thinking I may have ADHD, and to my surprise I left the assessment with both ADHD and autism. My initial reactions were a mix of relief, grief, fear, and hope. I was also confused as to why it took 20 something years for someone to notice.

So why was I missed as a kid? I might never know for sure, but as I learned more about autism from the Autistic community I discovered the term masking, also known as Autistic camouflaging. This is when someone hides their Autistic traits in order to be perceived as “normal”. Immediately, I resonated with this and was thankful to be able to put words to my experience.

My Research

Despite having a colloquial definition of what masking is, I wanted to learn more about how masking is experienced psychologically. Is it positive, negative, or both? How does it make one feel emotionally, physically, spiritually? Is it tied to socialization or other social processes/systems like my gender? Pursuing my master’s degree seemed like the perfect opportunity to explore similar questions in a formal setting. Due to my personal stake in my research and my belief that no research can be perfectly objective, I decided to conduct an Autoethnography to address these questions.

Autoethnography combines aspects of autobiographical writing with a type of qualitative method called ethnography to create a detailed account of the researcher’s internal world in relation to a social group. Data collection for autoethnography looks a little different than other research studies. I plan on reflecting on key moments of my past where camouflaging was present and asking myself questions about the experience with the main research question being; What is the lived experience of Autistic camouflaging? Combined with existing literature on the topic, Autoethnography is an effective way to challenge the dominant, often negative story around autism.

What I hope for this work is to illuminate how camouflaging shows up in everyday life and how this may affect Autistic people. I also hope that my experiences will resonate with other Autistics so we can work towards greater acceptance of ourselves and build stronger networks of community.

My time with Re-storying Autism

I had the opportunity to complete a Practicum placement as part of my Master’s program, and I was fortunate to be able to work with the Re-storying Autism in Education partnership this summer, led by Dr. Patty Douglas at Queen’s University. Re-Storying Autism connects Autistic people, their families, researchers, educators, and artists through arts-based storytelling projects. Some of their goals include developing new ways of understanding autism that challenge dominant, often deficit-based understandings. Diversity is also important to Re-Storying Autism and they work to center stories of Black, Indigenous and people of colour in the pursuit of disability justice.

I was involved with reviewing ethics protocols, learning about arts-based methods, as well as applying critical scholarship to a community research setting. Throughout my time with Re-storying Autism I have gained a deep appreciation for arts based knowledge mobilization. I was primarily involved in developing a tool to share report card comments that Autistic and neurodivergent individuals have received throughout their time in education. In my opinion, The Report Card Project is important in providing insight into school experiences of Autistic and neurodivergent students. I remember teachers telling me “Zahra doesn’t apply herself” or, “Zahra needs to work on focusing more in class”. These comments can be damaging, especially when a student is trying their best to work with their ADHD and autism traits. This project will also give Autistic and neurodivergent people an opportunity to speak out regarding negative or ableist comments they have received in the school system.

When assisting with the Report Card Project, I quickly came to the realization that it can be difficult to balance creativity with knowledge content. Thankfully, the Re-storying Autism Collective is a highly supportive group of people with a diverse set of skills, so I never felt stuck or discouraged throughout this process. I also learned that collaborative research is highly effective at gathering different perspectives during the development and brainstorming phases of a project. Once a month I would connect with people from a diverse set of backgrounds. Working in such a collaborative research setting helped shed light on new ways of approaching questions and knowledge.

Concluding Reflections

Overall, I am thankful for my time with Re-Storying Autism. I think the future of autism research would benefit from the inclusion of first-person perspectives and engagement with organizations that take into account real lived experience when disseminating knowledge around autism. I would love to see more collective action, but I believe that we first need to establish a community that is safe and supportive enough for other Autistic and neurodivergent individuals to tell their own stories.

We invite you to visit the following links for more information about the Re-Storying Autism in Education partnership and the Re-Storying Collective.