Informed Consent

Informed Consent

Hiding in Plain Sight: Exploring Environmental Factors of Camouflage and Autism Diagnosis

I am a doctoral student in the Clinical Psychology department at Antioch University, New England, currently conducting a research project as part of my degree. I would like to invite you to participate in a study exploring how social environments influence the under-identification of individuals on the autism spectrum. Our focus is on understanding the phenomenon of camouflaging, also known as masking, compensating, or passing as non-autistic, and how it develops.

Purpose of the research:

This study seeks to explore the lived experiences of individuals who were diagnosed with autism after the age of 15 and are currently between 18 and 35 years old, having received a community-based diagnosis from a physician, psychologist, or neuropsychologist. The information gathered will help describe how their social environments may have contributed to their late identification. It may also highlight areas for future research to improve autism screening and deepen our understanding of camouflage behaviors.

Participant Selection

You are invited to participate in this research if you were diagnosed with autism by a community professional (such as a physician, psychologist, or therapist) after your 15th birthday and are currently between 18 and 35 years old. As the primary participant, you will also need to invite someone who knew you well during childhood, preferably a parent or primary caregiver, to participate as a collateral reporter. If you cannot find someone willing to fulfill this role, unfortunately, you will not be able to participate in the study.

Primary Participant

If you agree to participate, you will be asked to complete a demographic questionnaire and participate in an interview via Zoom, which will last between 60 and 90 minutes. The interview can be conducted with your collateral reporter present, or, if you prefer, I can interview them separately. If conducted separately, I will interview the collateral reporter first, allowing you, as the primary participant, to provide your perspective on their comments. After the interview, I will send you a brief summary and a copy of the transcript to get your feedback and ensure that your intended message was captured correctly. If you need to make adjustments, we can meet again to correct comments as necessary.

Collateral Reporter

If you agree to participate, you will be asked to take part in a Zoom interview lasting between 60 and 90 minutes, focusing on your experiences and those of the primary participant. While the primary goal of this study is to understand the primary participant's lived experiences, your insights can provide valuable context about their early childhood and may even help prompt their memories. After the interview, I will send you a brief summary and a copy of the transcript to get your feedback and ensure that your intended message was captured correctly. If you need to make adjustments, we can meet again to correct comments as necessary. If you are interviewed separately, at the primary participant's request, the transcript of our interview will be shared with them.

Reimbursements

As a token of appreciation for their contribution, each participant and collateral reporter will receive a $20 Amazon gift card after returning their feedback on the summary and transcript.

Benefits

Participating in this study will help others learn more about the possible relationship between camouflaging behaviors and a delayed diagnosis of autism. You can also email me to ask me to send you the results from this project when the data are available.

Risks

No study is completely risk-free. However, I do not anticipate that anyone will be harmed or distressed during this study. There is a small possibility that you may experience discomfort in responding to questions about your childhood or times that were difficult for you. If this is a potential source of great distress for you, then you should not participate in this study. Other than this possible discomfort, we do not expect any risk to you or your collateral reporter.

In the case that the questions during the interview are too stressful, the participant is welcome to skip any question or stop the interview.

Confidentiality

The information provided will be combined with information from other participants. No names will appear on any form. Neither you, your collateral reporter, nor anyone else taking part in the study will be named or identified. Your information will be kept entirely confidential. No one will know that you participated in the study unless you share that information yourself.

If you choose to send me an email to request a summary of the analyzed data, your email will be temporarily saved in a locked file and deleted after the results are shared. No reports about this study will contain identifying information.

Limits of Confidentiality

Generally speaking, I can assure you that I will keep everything you tell me or do for the study private. Yet, there are times when I cannot keep things private (confidential). These times include:

·       Finding out that a child or vulnerable adult has been abused,

·       Finding out that a person plans to hurt themselves, such as commit suicide,

·       Finding out that a person plans to hurt someone else.

Some laws require many professionals to take action if they think a person is at risk for harm, abuse, or harming someone else. Please ask any questions you may have about this issue before agreeing to be in the study. It is important that you do not feel betrayed if it turns out that the researcher cannot keep some things private.

Future Publication

The primary researcher, Gayle Perreault, reserves the right to include any results of this study in future scholarly presentations and/or publications. All information will be de-identified before publication.

Taking part is voluntary.

Right to Refuse or Withdraw

You do not have to participate in this research if you do not wish to, and you may withdraw from it at any time with no consequences.

Whom to Contact

If you have any questions about the study, you may contact Gayle Perreault via email at gperreault@antioch.edu. Please put “Hiding in Plain Sight” in the subject line of any email you send.

If you have any questions about your rights as a research participant, you may contact Dr. Kevin Lyness, Chair of the Antioch University New England Institutional Review Board at klyness@antioch.edu or 603-283-2149 or Antioch University New England Provost, Dr. Shawn Fitzgerald, (603) 283-2356, sfitzgerald3@antioch.edu.

Thank you for helping us further understand how camouflaging behaviors and delayed diagnosis of autism are related.