Hiding in Plain Sight: Exploring Environmental Factors of Camouflage and Autism Diagnosis
Hiding in Plain Sight: Exploring Environmental Factors of Camouflage and Autism Diagnosis
This study explores how environmental factors contribute to the development of camouflaging behaviors and delayed autism diagnoses in individuals diagnosed with autism after the age of 15.
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Recent research suggests that some autistic individuals may never be diagnosed with the condition. This study aims to identify how environmental factors contribute to developing camouflaging behaviors and potential delays in autism diagnoses. We seek to include diverse perspectives, particularly from those traditionally overlooked or excluded, such as women and gender-nonconforming individuals.
We are looking for individuals who meet the following criteria:
Individuals diagnosed with autism after the age of 15
Currently between 18 and 35 years old
Willing to invite a collateral reporter (parent, primary caregiver, sibling, or friend who knew you well before age 15)
willing to spend 60 to 90 minutes in a semi-structured Zoom interview discussing their development and path to diagnosis - this interview will be recorded and transcribed
Your participation will contribute to important research that aims to improve understanding of autism diagnosis and camouflaging behaviors. Your story will help provide broader perspectives on shared and differential experiences among autistic individuals.
If you meet the above criteria and are interested in participating:
start by reading the informed consent here
then if you'd like to be a participant in our study, please complete the particpation form and the researcher will contact you.
Participation is voluntary, and all responses will be kept confidential.
Recent research has suggested that some autistic individuals[1] have a substantial risk of never being diagnosed with the condition (Bargiela et al., 2016; Lai & Baron-Cohen, 2015; Livingston et al., 2019). Existing literature has varied widely in attempts to clarify this concern and made minimal definitive progress in reaching a consensus on why individuals are not referred for diagnostic assessment, often focusing on the disparity in accurate identification of autism between men and women (i.e., researching diagnosis differences with gender considered a binary construct) (Baldwin & Costley, 2016; Estrin et al., 2021). Such research frequently concludes that an individual’s use of camouflaging/masking plays a notable role in the discrepancy of referral for diagnosis. This study aims to identify how environmental factors may contribute to developing camouflaging behaviors and delaying diagnoses for individuals. Using an inductive, collective case study design, I plan to collect narratives about the lived experience of individuals who were diagnosed with autism after the age of 15 and who are between the ages of 18 and 35 at the time of the interview. By intentionally including individuals with any gender identity, this study aims to provide broader perspectives on shared and differential experiences among those who traditionally might be overlooked or excluded but also respects and values the diversity of experiences, extending insights into the identification of those underrepresented in the current literature, particularly women and those who are gender non-conforming. This inclusivity is a key aspect of the research, as it ensures that all voices and experiences are considered in the study of the role that camouflage may play in delayed autism diagnosis.
[1] Regarding the terms “sex” and “gender” within this project, the World Health Organization (WHO) defines sex as the biological and physiological characteristics that include sex chromosomes (World Health Organization, n.d.). Strang et al. (2020) explain that gender encompasses a range of internal and external experiences and social and cultural components. They also note that in autism research, these terms are often conflated, and gender is typically examined from a binary perspective. This binary approach overlooks the experiences of a significant portion of the population, leading to incomplete data and potentially biased conclusions.
Contact gperreault@antioch.edu to get more information on the project