Experiences with Coping Mechanisms, Social Demands, and Anxiety in Adults Diagnosed with Autism Spectrum Disorder in Adulthood

 

Yunsu Shin, Leann Kuchler, Kan Guan

Department of Psychology, University of Rochester

PSYC 219: Research Methods in Psychology

Dr. Daniel Mruzek and Dr. Karl Rosengren

May 9, 2024

 

 

Abstract

This study explores the experiences of adults diagnosed with autism spectrum disorder (ASD) in adulthood, focusing on their coping mechanisms, social demands, and anxiety. The research highlights social camouflaging, where individuals mask autistic traits to conform to neurotypical norms as a significant strategy used by adults with ASD. Through semi-structured interviews and thematic analysis, the study examines how factors such as age at diagnosis, gender, and personal experiences influence the use and effectiveness of various coping strategies. Two female participants provided insights into their experiences with camouflaging, relationships, and anxiety management, revealing a complex interplay between these elements. The findings suggest that camouflaging can facilitate social integration but often leads to psychological strain and burnout, underscoring the need for personalized support strategies and increased societal acceptance of neurodiversity. The study’s implications emphasize the importance of early detection, intervention, and the development of inclusive environments that reduce the need for camouflaging. Despite the limitations of small sample size and potential biases, the research provides valuable insights into the lived experiences of adults with ASD, informing future research and support mechanisms to enhance their mental health and social integration.

 

 

 

 

Introduction

Autism Spectrum Disorder (ASD) is a term that encompasses a spectrum of neurodevelopmental conditions, each marked by distinct challenges in areas of social communication, repetitive behaviors, and restricted interests. This definition, outlined by the American Psychiatric Association (2013), underscores the heterogeneity within ASD diagnoses, highlighting the individual variability among those on the spectrum. In recent years, the narrative around ASD has expanded beyond childhood and addresses the unique experiences of adults with ASD. One of these experiences, which has started garnering attention, is social camouflaging, defined as the deliberate masking of autistic traits to conform to neurotypical social norms (Hull et al., 2020). This study unpacks the intricate dynamics of coping mechanisms, such as social camouflaging, and their implications for the mental well-being of adults diagnosed with ASD. It seeks to critically examine how variables like age at diagnosis and the utilization of various coping strategies influence these dynamics.

Social camouflaging, while serving as a potential bridge to social integration, can exert a profound psychological toll on individuals with ASD. Adults employing camouflaging strategies to manage social interactions, career opportunities, and familial bonds may face heightened levels of stress, anxiety, and depression, suggesting a complex interplay between coping mechanisms and mental health outcomes (Cage & Troxell-Whitman, 2019; Huang et al., 2020). This research posits that the impact of camouflaging on mental health is not uniform but varies according to a constellation of factors, including but not limited to the timing of ASD diagnosis, coping strategies employed, family dynamics, engagement with social media, and success in forming and sustaining personal relationships (Cassidy et al., 2019).

Critically, the age at which individuals receive an ASD diagnosis emerges as a pivotal factor in shaping their social experiences and mental health trajectories. Adults diagnosed with ASD later in life often report prolonged periods of misunderstanding and misdiagnosis, which can significantly impact their overall well-being and capacity for social integration (Leung et al., 2023). This study aims to explore the breadth of coping strategies utilized by adults with ASD, with a particular emphasis on camouflaging, to offer a comprehensive overview of how these coping strategies influence autistic adults' lives. This investigation will look into the potential disparities in camouflaging behaviors and their outcomes, aiming to explore opportunities for enhancing autism diagnosis processes and developing targeted support mechanisms to improve mental health and social integration for adults with ASD (Lai et al., 2017). By acknowledging the rich and varied experiences of individuals with ASD, this research underscores the necessity of adopting a multifaceted approach to understanding the array of coping strategies beyond camouflaging (Hull et al., 2020). In doing so, this project seeks to contribute valuable insights into the living experiences and challenges of adults with ASD, focusing on a thorough investigation of (a) anxiety and depression experienced by people with ASD; (b) careful treatment of coping strategies; and (c) the social, vocational, and relationship experiences of adults with ASD. The understanding that emerges from this study aims to bridge gaps in current knowledge and practice, providing a foundation for future research and interventions designed to foster a more inclusive and supportive environment for adults with ASD.

Research Question

What coping strategies are used by adults diagnosed with ASD in adulthood in order to manage anxiety?

Hypothesis

  1. Adults diagnosed with ASD in adulthood will exhibit a diverse range of coping strategies to navigate social interactions and manage the challenges associated with their diagnosis.

  2. The utilization of coping strategies among adults diagnosed with ASD in adulthood will be influenced by individual differences such as age, gender, and age of diagnosis.

  3. Social camouflaging will emerge as a prominent coping strategy among adults diagnosed with ASD in adulthood, as they may employ this strategy to navigate social situations.

 

Methods

Participants

Participants were recruited through the support of our community partner, Dr. Daniel Mruzek, at the Golisano Autism Center located in Rochester, NY. This study aimed to recruit adults ages 18 and older who have been formally diagnosed with autism spectrum disorder in adulthood. Efforts were made to recruit a diverse participant pool in terms of age, age of diagnosis, and gender to comprehensively assess the impact of these variables on the outcomes of camouflaging behaviors and experiences with autism.

Design and Procedure

This study focused on participants' personal experiences with coping strategies like camouflaging and relationship dynamics to capture the qualitative, nuanced experiences of participants as adults with ASD. A mixed-methods design focused on qualitative data from semi-structured interviews and quantitative data provided by a 5-point Likert scale for satisfaction. This approach allowed for a nuanced exploration of in-depth data collection to understand coping mechanisms and their impacts, considering the complex interplay of age, gender, anxiety, and social dynamics.

Qualitative Interviews

Semi-structured interviews of our participants were conducted virtually over Zoom, facilitated by one interviewer, and supported by two notetakers. The interview was divided into five sections: Introduction, Demographic Questions, Camouflaging Experience Questions, Relationship Questions, and Anxiety and Coping Questions. Before the interview, participants were informed about the potential risks associated with the study and their right to withdraw their participation at any point. The interviewer had their camera turned on during the interview and adhered to an established protocol, ensuring the interview was consistent and replicable. Additionally, follow-up questions were posed when intriguing topics arose, allowing for deeper exploration and understanding.

Data Analysis

Quantitative data were compared between participants to determine satisfaction trends and discover relationships between satisfaction and personal experiences. Qualitative data from interviews were subjected to thematic analysis to extract key themes within each topic section, such as age, gender, camouflaging experiences, and anxiety coping strategies.


 

Results

Demographics

Two female participants were interviewed, both having pursued higher education and sought an official ASD diagnosis to secure workplace accommodations. Participant 1, a 41-year-old woman, was diagnosed a year before the study after recently suspecting she was on the spectrum. Along with ASD, she manages anxiety, depression, and dyslexia. As a high school math teacher, she challenges coping with her sensitivity to loud noises and obligatory social interactions inherent to her role. Despite her qualifications (a PhD in psychology), she finds navigating workplace dynamics challenging due to differences in communication styles and hierarchical structures. She expressed frustration over being misunderstood and navigating rules that do not accommodate her neurodiverse needs.

Participant 2, a 24-year-old woman, was diagnosed at age 22, although she had long recognized her atypical social functioning. Anxiety significantly impacts her daily life, and challenges in her graduate program prompted her to seek diagnosis and accommodations to continue her career goals. Working in education and crisis intervention, she finds classroom settings overwhelming due to her fear of judgment from peers and colleagues. This fear drives her to retreat and isolate herself whenever possible.

Camouflaging

Both participants acknowledged social camouflaging as a necessary strategy in their personal and professional lives, sharing a sense of discomfort and inauthenticity in conforming to neurotypical norms. Participant 1 described her lifelong camouflaging behavior as "living in a constant state of adaptation." Her blunt communication style often resulted in discomfort during social interactions, prompting her to speak less to avoid crossing perceived social boundaries. She explained her difficulties following unspoken social norms, noting, "In certain hierarchical situations, I force myself to make eye contact. I feel stressed out but need to be socially acceptable". Her tendency to avoid confrontation with colleagues was rooted in her blunt communication style, often resulting in unintended offenses. Participant 2 similarly forced herself to socialize at work despite finding small talk challenging and unnatural. She preferred indirect communication via email and found solace in structured meetings where interruptions were minimized.

Nevertheless, she remained anxious about crisis intervention, stating, "I get to hide behind email a lot, but I am nervous in classroom crisis management situations." Her fear of judgment forced her to maintain a facade in professional settings, leading to constant stress. Overall, both participants found camouflaging mentally exhausting and often led to burnout due to the persistent pressure of adaptation. This psychological toll contributed to heightened anxiety and avoidance behaviors.

Relationships

Both participants strongly preferred friendships rooted in intellectual connection, shared interests, and mutual understanding, emphasizing the importance of non-judgmental communication and open-mindedness. Participant 1 (pseudonym) noted that she gravitates towards friends who are "more on the spectrum" or "nerdy," with whom she feels intellectually aligned. Her social network frequently includes fellow academics or online communities, where she can bond over specialized interests. She struggled to maintain familial relationships, particularly with her father, who was perceived as blunt and emotionally detached. His behavior profoundly impacted her perception of social relationships, leading her to cultivate a close-knit circle that respected her boundaries.

Participant 2 (pseudonym) relied heavily on online connections to build her social network. Her friends understood her challenges and respected her need for space and flexibility; despite supportive relationships with her grandparents and sister, her mother's skepticism regarding her diagnosis created tension. This skepticism made her feel misunderstood and seek solace in friendships that could offer her the empathy and understanding she needed.

Coping and Anxiety

Both participants utilized distinct coping strategies to manage their anxiety and social stressors. Participant 1 avoided overt stimming due to familial discouragement during her upbringing. Instead, she relied on subtler forms like clenching her hands and toes or adopting robotic facial expressions. She withdrew from uncomfortable situations, minimizing social interactions, although this avoidance often led to a more profound sense of isolation. Her psychology background allowed her to articulate her coping strategies clearly, noting that Cognitive Behavioral Therapy (CBT) did not work for her since it did not address her specific needs as a neurodivergent individual. Participant 2 found isolation and indirect communication effective in managing her anxiety. She would often remove herself from stressful situations to reset emotionally. She also engaged in hair twirling and tongue clicking as soothing behaviors. Despite these mechanisms, she stated that "taking a minute and walking away" was her most reliable method. However, her avoidance limited social engagement, reducing her ability to form new connections. These findings illuminate a spectrum of coping mechanisms, ranging from subtle stimming to social isolation, highlighting the intricate relationship between anxiety, relationships, and camouflaging behaviors in adults with ASD.

 

Discussion

Hypothesis/Implications

The purpose of this study was to investigate the experiences of adults diagnosed with autism spectrum disorder (ASD) in adulthood, with a specific focus on their coping strategies to navigate social interactions and manage the challenges associated with their diagnosis. The hypothesis was that these individuals would employ various coping mechanisms influenced by factors like age, gender, and age of diagnosis, with social camouflaging emerging as a primary strategy.

  1. Variety of Coping Mechanisms: Confirming that adults employ various coping mechanisms would emphasize the importance of developing personalized support strategies. Therapeutic approaches could be customized to address individuals' specific needs, especially since Cognitive Behavioral Therapy (CBT) may not be universally effective.

  2. Impact of Social Camouflaging: The prominence of social camouflaging as a coping strategy highlights the urgent need for increased societal awareness and acceptance. Camouflaging frequently leads to psychological exhaustion and burnout, indicating that adults with ASD may benefit from workplaces and social environments that accommodate neurodiversity. Employers, educators, and healthcare professionals could support neurodivergent individuals better by fostering inclusive spaces that reduce the need for camouflaging behaviors.

  3. Influence of Age at Diagnosis: The age at which participants were diagnosed with ASD significantly influenced their coping strategies and social experiences. The participant diagnosed later in life reported prolonged periods of misunderstanding and misdiagnosis, which impacted her well-being and social integration. This finding underscores the importance of timely and accurate diagnosis in improving the quality of life for individuals with ASD.

  4. Relationship Dynamics: Both participants preferred friendships and social interactions, gravitating towards intellectually stimulating and non-judgmental relationships. Family dynamics also played a critical role in their coping strategies, with participants reporting varying degrees of support and understanding from family members.

  5. Challenges in Professional Settings: Both participants faced unique workplace challenges due to their ASD. They reported difficulties with hierarchical structures, communication styles, and social expectations. These challenges often required them to expend significant mental energy to adapt and camouflage their traits, further contributing to their anxiety and stress levels.

  6. Mental Health Implications: The study found that the coping mechanisms employed by participants, particularly social camouflaging, were closely linked to their mental health outcomes. Both participants reported heightened levels of anxiety and depression, suggesting that the psychological toll of camouflaging and other coping strategies can significantly impact the mental well-being of adults with ASD.

Those diagnosed later in life could face long-standing misconceptions about themselves. It is essential to offer support programs that help individuals understand and manage their symptoms in a supportive context.

These findings would inform the creation of workplace accommodations, diagnostic criteria, and public awareness campaigns that promote a deeper understanding and acceptance of neurodiversity in adults. Recognizing the diversity in coping strategies will help provide effective interventions and create more supportive environments for adults diagnosed with ASD.

Limitations

Our study's sample size (n=2) is small due to the difficulty of recruiting participants within this area. Not only does the population of adults diagnosed with autism in adulthood represent a significantly smaller subgroup of the overall ASD population, but some individuals that we contacted found the study intimidating and opted not to participate due to social anxiety. Because of our limited sample size, our data and findings cannot be generalized to the entire population of adults diagnosed with ASD in adulthood. Another notable limitation of our research is the sampling bias of our participants. Our recruitment efforts were solely conducted through the Golisano Autism Center, resulting in data that only represent the experiences of those who live in the Rochester area. In addition, our participant pool consisted of only females, so we could not represent the experiences of males or other genders, which would allow us to test gender as a variable in ASD. Lastly, since we did not record the video or audio of our interviews, our reliance on hand-written notes makes our data susceptible to human error. During our data analysis, we were limited to the stories we wrote down or remembered, leaving room for misheard dialogue or poor memory. Despite these limitations, our data holds rich, nuanced insights into individual experiences that are valuable for informing future directions in the study and support of individuals diagnosed with ASD in adulthood.

Future Directions

In looking at the future direction to address the challenges faced by adults with ASD, the first step is to expand the research and overcome the limitations of current studies. Those limitations can be addressed by investigating the long-term impact of coping strategies and mental well-being. Additionally, efforts should be made towards diversified sampling in research, which is essential to ensure a comprehensive grasp of the varied experiences within the ASD population. Secondly, public awareness campaigns can be crucial in reshaping societal perceptions. Beyond research and awareness, policy advocacy is crucial for systemic change. Governments and organizations can collaborate to create policies that ensure ongoing support for individual with autism. These policies should focus not only on meeting the immediate needs of individuals with ASD but also on building a framework for long-term inclusion.

Educating the public about the hidden challenges of coping strategies of individuals with ASD and fostering acceptance of neurodiversity are essential. Promoting inclusive practices among employers and educators can also create environments where neurodiverse individuals can thrive. Finally, support mechanisms must be established at the social and personal levels. At the social level, implementing workplace accommodations and offering job coaching services can. On a personal level, cultivating a strong support network of close friends can serve as a buffer against the pressures from family or societal pressures, fostering resilience and self-advocacy. Through concerted efforts in these areas, a more inclusive and supportive environment can be created for adults with autism to feel comfortable in public settings. These findings highlight the importance of personalized support strategies, societal awareness, and inclusive environments to reduce the psychological toll of camouflaging and improve the well-being of adults with ASD.

 

 

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Appendix

Protocol of the Interview (30-45 minutes)

*conducted via zoom

*collect a code name (not real names)

*include slides with the topic + specific things when necessary (be careful not to bias or prime the interviewee)

 

Data Collection:

Researcher A: Interviewer

Researcher B: Note taker

Researcher C: Note taker

 

*if they don’t answer the question, ask a follow up question to guide them in the correct direction

 

Introduction

Hello, my name is ___. These are my classmates___ and___. We are conducting this interview for a class project in course PSYC 219, under the supervision of Professors Dan and Karl at the University of Rochester. We are interested in understanding more about the living experiences of adults with autism.

This interview may take around 30 minutes. During the interview, we may ask some general questions about you and then about your experiences. We will not be collecting your name and your responses will be kept confidential. Your participation in this interview is voluntary and you may stop and withdraw from the study at any time. Do you have any questions about the study or any other questions?