What Is This Study?

Purpose of the study

You are invited to take part in this study highlighting autistic experiences of care in clinic settings. I want to increase public and academic understanding of autistic experiences of care, as communicated through autistic words and images. The final product of this research will include a written, academic component and a graphic novel component, describing participants’ experiences of care. The graphic novel component is meant to show my theoretical analysis of this project in a more approachable and engaging way for general audiences.

I am doing this research for my MA thesis in Anthropology at McMaster University. This is a line of research that I hope to continue in the future, possibly for my PhD thesis. Therefore, I will use your data for this project and, if given your consent, for future related studies.

What happens in the research?

I will ask you to answer a series of questions related to your experiences of treatment you’ve received and your opinion on care in these experiences. You will be sent the questions two days before your interview. The interview will:

Be started with a discussion of potential psychological triggers or flagged topics to be avoided or treated with sensitivity for your comfort and safety
Take approximately one to two hours at a time that is convenient for you
Be held over a password protected Zoom call or an agreed upon alternative to be arranged with me, such as a Microsoft Teams meeting or phone call
Be recorded by handwritten notes as well as audio-recording or chat-recording, with your permission
Include questions like “How did you come to identify as autistic?”, “What circumstances brought you to seek or receive treatment?”, and “What do you associate with the word ‘care’ thinking back on the treatment we’ve talked about?”
You will be asked to provide a description of what you talk about in the interview for me to illustrate
Illustrations will be sent to you for approval before finalization in the graphic novel component of my thesis

You must have a working microphone and access to Zoom or otherwise arrange with me an alternative such as using the chat feature to communicate. This study will use the Zoom platform to collect data, which is an externally hosted cloud-based service. A link to their privacy policy is available here (https://zoom.us/privacy). Please note that whilst this service is approved for collecting data in this study by the McMaster Research Ethics Board, there is a small risk with any platform such as this of data that is collected on external servers falling outside the control of the researcher.

If you are concerned about this, I would be happy to make alternative arrangements for you to participate, including a fillable form PDF which you answer on your own time and return to me via email.

The Interview Process

At the start of the interview, I will also ask you some demographic/background information like your age, the city or province/state where you received your treatment, and other identities you feel are important to how my study represents you (race, gender, sexual orientation, class, etc.). To protect your privacy, you will be given a pseudonym in the finished product of this research either based on your own suggestion or my choice.

Immediately following the interview, I will conduct a debrief to check-in on your well-being and open the floor to any concerns you may have about the experiences you have shared being included in my project. This will take around five minutes or less.

After the interview and debrief have been concluded, you will be contacted by me via email with a summarized transcript of what we talked about. I will ask for specific points from your interview that you would like to have depicted in visual or artistic descriptions and representations that will be included in the graphic novel component of my thesis. At this point you may look over the transcript and approve or decline the inclusion of any part of what you shared. You may also decline to give me any visual descriptions. All transcript approvals and visual descriptions must be completed no later than March 31st, 2022.

Potential Harms, Risks or Discomforts

The risks involved in participating in this study are minimal. You may feel uncomfortable or upset from recalling difficult or triggering experiences associated with your treatment history. You do not need to answer questions that you do not want to answer or that make you feel uncomfortable. Should you feel upset or distressed, I will provide you with a list of community and online accessible support services that you may contact. At any point in the interview, you may call for a break or to stop the interview entirely. Withdrawal from the study is possible at any time up to March 31st, 2022, at which point I will need to finalize preparation of my thesis.

You may risk loss of privacy of information about your experience within clinical care systems through identifying information shared in the interview and visual representations shared post-interview to be illustrated. However, I will make every effort to protect confidentiality and anonymity. I describe below the steps I am taking to protect your privacy.

Potential Benefits

This research will not benefit you directly. However, I am conducting this research to give a platform in both voices and visual representations for autistic people by autistic people in the discussions happening about us in academia and the clinical setting. The joining of art illustration and a theoretical thesis is deliberate so that my study can reach broader audiences. Historically, autism studies have featured experts and community members talking about autistic people for what they consider to be the best interests of this population.

My research project will offer an opportunity to represent autistic viewpoints from the outset of the study concept to the final product, contributing an analysis of care practices that remains relevant to the specific interests of autistic populations and has the potential to offer insight into improving care practices. Should you agree to my storage of your data after this project is complete, I hope to use this research in future projects to develop advocacy efforts for better care for autistic people in Canadian (and American) healthcare.

Who will know what I said or did in the study?

I will make every effort to protect your confidentiality and privacy. I will not use your name or any information that would allow you to be identified. However, we are often identifiable through the stories we tell. As such, keep this in mind when recalling specific details like names of clinics or physicians/therapists when recounting your experiences. No one but me will know whether you were in the study unless you choose to tell them. To ensure this, you will be given a pseudonym to anonymize what you share with me (the specific name will be your choice or mine).

The information/data you provide, including interview notes, audio recordings, and visual descriptions, will be kept in a password-protected desktop computer where only I will have access to it. It will also be encrypted and stored on MacDrive, a secure McMaster data storage service.
Once the study is complete, an archive of the data, without identifying information, will be maintained by me with your permission.

Legally Required Disclosure

Although I will protect your privacy as outlined above, if the law requires it, I may be asked to reveal certain personal information (e.g., child abuse, violent crime, sexual abuse, risk of violence to self or others, etc.).

Participation and Withdrawal

Your participation in this study is voluntary at every step. If you decide to be part of the study, you can stop (withdraw), from the interview and illustration stage for whatever reason, even after signing the consent form or part-way through the study or up until March 31st, 2022, when I expect to be finalizing preparation of my thesis. Please contact me via email should you decide to withdraw.

If you decide to withdraw, there will be no consequences to you. In cases of withdrawal, I will destroy any data you have provided unless you indicate otherwise. If you do not want to answer some of the questions you do not have to, but you can still be in the study.

Information about the Study Results

I expect to have this study completed by approximately September 30th, 2022. If you request it and provide me with your email or postal address, you will be sent a copy of the finished illustration and/or thesis. A copy of the complete thesis will be posted on the McMaster University Digital Commons at the time of my defence.