Transition to Adulthood – Autistic Burnout and the Costs of Coping and Passing
TLDRThe video script features a discussion led by Dora Raymaker, a researcher at Portland State University and a member of the autistic community, on the topic of 'autistic burnout.' The concept, prevalent within the autistic community, describes a state of extreme exhaustion and loss of abilities beyond professional burnout, affecting various aspects of life. Raymaker emphasizes the need for research to understand, prevent, and address autistic burnout, which can lead to skill loss, relationship breakdowns, and even chronic health issues. The talk delves into the experiences of burnout, its potential causes, and the importance of community engagement in research. Strategies to cope and recover from burnout are also discussed, highlighting the value of self-acceptance, reduced expectations, and the support of empathetic communities. The conversation underscores the importance of considering the unique challenges faced by autistic individuals and the systemic changes necessary for improved well-being and inclusion.
Takeaways
- 🧑⚕️ David Eaton, a nurse practitioner at Seattle Children's Autism Center, is substituting for the regular host of the Autism 200 lecture series.
- 📚 The Autism 200 series focuses on specific, in-depth topics within the autism spectrum, going beyond general discussions to explore subtopics in detail.
- 👩🎓 Dr. Dora Raymaker, an autistic researcher from Portland State University, is introduced as the speaker for the night, discussing the concept of 'autistic burnout'.
- 🔬 Dr. Raymaker's research interests include community-engaged practice, systems thinking, and the intersection of science, society, and public policy, with a goal to improve health, well-being, and reduce stigma in the autism community.
- 🤝 ASPIPE (Autism Spectrum Partnership in Research and Education) is a collaborative research group co-founded by Dr. Raymaker, which includes autistic individuals and focuses on participatory research to address community needs.
- 🧘♀️ Autistic burnout is described as a state of extreme exhaustion and loss of abilities that can occur at any age, often related to the stress of 'masking' or hiding autistic traits to fit social expectations.
- 🤔 The research aims to characterize autistic burnout, understand its qualitative nature, and develop a measure for it, to better address and prevent it within the autistic community.
- 🌐 Data for the study was collected from interviews with autistic adults, as well as from online media sources, reflecting a diverse range of experiences and perspectives.
- ⏳ Recovery from burnout often involves taking time off, reducing expectations, engaging in stimulatory behavior or special interests, and sensory or social withdrawal.
- 🤝 The importance of support from friends, family, and professionals who understand and accept the autistic individual without demanding them to 'mask' or change their behaviors is emphasized.
- 🌟 The discussion highlights the need for broader systemic changes to reduce discrimination and stigma, and to create environments that are more accommodating to autistic individuals.
Q & A
What is the purpose of the Autism 200 lecture series?
-The Autism 200 lecture series is designed to delve into specific subtopics within the broader subject of autism, providing a more in-depth understanding of these topics beyond general discussions. It is aimed at individuals who have some foundational knowledge of autism and are seeking a deeper exploration of particular areas.
Who is Dr. Dora Raymaker and what is her role in the autism community?
-Dr. Dora Raymaker is a PhD researcher at Portland State University's Regional Research Institute for Human Services. She is also the co-director of ASPIRE, a research and education partnership focused on the autism spectrum. Dr. Raymaker is an autistic person herself and her research interests include community-engaged practice, systems thinking, and the intersection of science, society, and public policy. She conducts research aimed at improving health, well-being, employment, self-determination, and reducing stigma in the autism community.
What is ASPIRE and what does it stand for?
-ASPIRE stands for Academic Autism Spectrum Partnership in Research and Education. It is a research group co-founded by Dr. Dora Raymaker and Christina Nicoleta, which collaborates with autistic people, academics, family members, healthcare providers, and disability service professionals to conduct research and develop resources that are relevant and useful to the autism community.
What is the focus of the summertime Autism 200 lectures?
-The focus of the summertime Autism 200 lectures in recent years has been on transitioning into adult years, with adult-related topics being the central theme. This includes discussions on employment, healthcare, and other areas relevant to autistic adults as they navigate adulthood.
What is the concept of 'masking' in the context of autism?
-Masking in the context of autism refers to the act of suppressing or hiding one's autistic traits or behaviors to appear more neurotypical or to fit into societal expectations. This can be mentally and emotionally exhausting for autistic individuals, contributing to a phenomenon known as 'autistic burnout'.
What are some strategies to prevent or recover from autistic burnout?
-Strategies to prevent or recover from autistic burnout include taking time off from demanding activities, reducing expectations from oneself and others, engaging in stimulatory behaviors or special interests, sensory or social withdrawal, and seeking support from understanding individuals or communities. It's also important to accept the autistic person without the need for them to 'mask' their true selves.
What is the significance of the research on autistic burnout?
-The research on autistic burnout is significant because it aims to characterize and understand a phenomenon that is widely experienced within the autistic community but is not well-recognized in professional and clinical settings. The research seeks to develop a measure for autistic burnout and explore strategies for prevention and recovery, which can inform interventions and support for autistic individuals.
How does the concept of 'spoons' relate to the experience of disability and burnout?
-The 'spoons' concept is a metaphor used to describe the limited amount of energy or 'spoons' a person with a disability has to accomplish daily tasks. The idea is that managing disability can be so energy-consuming that there are fewer 'spoons' left for other activities. This concept is relevant to understanding the experience of burnout, as it illustrates the exhaustion that can result from the constant effort to 'mask' or hide one's disability.
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What are some of the key findings from the research on autistic burnout?
-Key findings from the research on autistic burnout include the identification of factors contributing to burnout, such as the pressure to meet external expectations, chronic masking, and change stress. The research also highlighted the impact of burnout on life, such as job loss, social isolation, increased sensitivity to sensory stimuli, and the loss of previously held skills. Additionally, the research underscored the importance of self-forgiveness, time spent on special interests, and the need for a supportive environment in recovery.
How does the research on autistic burnout relate to broader societal issues?
-The research on autistic burnout touches on broader societal issues such as discrimination and stigma around autistic behavior, the need for anti-discrimination and anti-stigma work, and the importance of system-level changes that normalize disability. It suggests that societal attitudes and structures can contribute to the experience of burnout and that changes at the systemic level could help reduce the overall risk for autistic individuals.
What is the role of community-based participatory research (CBPR) in the study of autistic burnout?
-Community-based participatory research (CBPR) is an emancipatory approach to research that values the lived experience and community knowledge of non-academic partners equally to academic expertise. In the context of autistic burnout, CBPR ensures that the research is conducted collaboratively with autistic adults and other community members, which helps to ensure that the research is relevant, respectful, and useful to the community it serves.
What are some of the challenges faced by the research team in studying autistic burnout?
-Some challenges faced by the research team include the need to develop a new measure for autistic burnout, as existing measures do not capture the unique experiences of autistic individuals. Additionally, the research is limited by a small sample size and the lack of representation of certain demographics, which may affect the generalizability of the findings. The team also grapples with the complexity of the phenomenon, which involves multiple interconnected factors and experiences.
How can family members and professionals support autistic individuals experiencing burnout?
-Family members and professionals can support autistic individuals experiencing burnout by reducing external expectations, accepting the person without the need for them to mask their autistic traits, providing emotional and physical support, and advocating for disability accommodations. They can also help by fostering a deeper understanding of autistic burnout and facilitating open discussions about the experiences and needs of autistic individuals.
Outlines
😀 Introduction to Autism 200 Lecture Series
David Eaton, a nurse practitioner at Seattle Children's Autism Center, introduces the Autism 200 lecture series designed for in-depth discussions on specific topics related to autism. He covers housekeeping notes, emphasizing privacy in questions, and introduces Dora Raymaker, PhD, a researcher and autistic individual, who will discuss 'autistic burnout.'
🤝 ASPIRE Research Group and Community-Based Research
Dora Raymaker discusses ASPIRE, a research group she co-founded that focuses on community-based participatory research (CBPR) to address issues faced by the autistic community. The group's work involves collaboration at all stages with autistic adults, academics, family members, and healthcare providers to improve healthcare, employment, and reduce stigma for autistic individuals.
🔍 Understanding Autistic Burnout
The concept of 'autistic burnout' is explored, describing it as a state of extreme exhaustion and loss of ability in various aspects of life, beyond professional burnout. The need for research on this topic is emphasized due to the lack of understanding and the significant impact on autistic adults' well-being. The study aims to characterize and understand autistic burnout and to develop a measure for it.
📚 Data Collection and Analysis on Autistic Burnout
Raymaker outlines the data collection process for understanding autistic burnout, which includes interviews with autistic adults and analysis of online media sources. The research employs thematic analysis to identify patterns in people's experiences and is conducted within a critical paradigm, involving multiple coders, member checking, and triangulation for verification.
🧩 Findings on Autistic Burnout Experiences
Key findings from the research are shared, detailing personal experiences of autistic burnout. These include loss of skills, increased sensitivity to sensory stimuli, social isolation, and the struggle to 'mask' as non-autistic. The experiences are widespread and can lead to severe outcomes, highlighting the urgency for further research and understanding.
🔗 Dynamics of Autistic Burnout
Raymaker discusses the dynamics of autistic burnout, using systems thinking to model the feedback loops that contribute to burnout. The model illustrates how the effort to cope and mask autistic traits can lead to exhaustion and a collapse of social and financial rewards, emphasizing the need for structural changes to prevent burnout.
📉 Impact of Autistic Burnout on Life
The personal impact of autistic burnout is described, including job loss, reduced social standing, mental health issues, and suicidality. The timing of burnout episodes is often during transition periods, such as puberty or starting a new job, and recovery is not always complete, with some skills lost permanently.
💭 Defining Autistic Burnout
Dora provides three different perspectives on defining autistic burnout, emphasizing the exhaustion, stress, and diminished capacity that result from trying to meet external demands. The definitions highlight the need for a better understanding and management of the condition.
🤔 Addressing Autistic Burnout: Strategies and Recommendations
Strategies to help with recovery from burnout are discussed, including taking time off, reducing expectations, engaging in stimming or special interests, and social withdrawal. Recommendations for family and friends to support recovery are also provided, such as offering emotional support and understanding.
🌟 Broader Considerations and Transition Age Insights
The need for broader considerations to address the need for masking and coping is emphasized, including anti-discrimination and anti-stigma efforts. Transition age is highlighted as a critical period for autistic individuals, with many experiencing their first burnout during this time, leading to significant challenges.
🚧 Navigating Expectations and Opportunities
The importance of balancing expectations with the reality of an autistic individual's capabilities is discussed. The focus is on achieving dreams in a way that is authentic to the person, without expecting them to achieve in the same manner as non-autistic individuals. The potential negative impact of reduced expectations on opportunities is acknowledged.
🔬 Research Limitations and Future Directions
Raymaker acknowledges the limitations of the research, including the small sample size and the focus on qualitative understanding rather than generalization. Future steps involve more research, measure development, and broader conversations about autistic burnout to inform action and prevention strategies.
🤝 Closing Remarks and Questions
The session concludes with thanks to the ASPIRE team and research participants, and an invitation for questions from the audience and viewers on Facebook Live. The importance of community wisdom and the need for research to support this wisdom are emphasized.
Mindmap
Keywords
💡Autistic Burnout
💡Masking
💡Community-Based Participatory Research (CBPR)
💡ASPIRE
💡Neurotypical
💡Stimming
💡Sensory Overload
💡Social Isolation
💡Executive Functioning
💡Transition Age
💡Respite Care
Highlights
David Eaton, a nurse practitioner at Seattle Children's Autism Center, is filling in for the regular host of the Autism 200 lectures.
The Autism 200 series focuses on specific subtopics within autism, aiming for in-depth discussions on particular subjects.
Dora Raymaker, an autistic PhD researcher at Portland State University, introduces ASPIRE, a research group that collaborates on autism-related topics.
ASPIRE employs a community-based participatory research (CBPR) approach, valuing community member expertise equally with academic knowledge.
The research aims to understand and define 'autistic burnout,' a term used within the autistic community to describe a state of extreme exhaustion and loss of abilities.
Autistic burnout is associated with chronic stress, stress from life changes, and the stress of 'masking' autistic behaviors to appear neurotypical.
The study on autistic burnout utilized qualitative data from interviews and online media sources to characterize the experience.
Participants reported a loss of skills, increased sensitivity to sensory stimuli, and a greater need for alone time as part of their burnout experience.
The research suggests that burnout can lead to job loss, social isolation, and a decline in mental and physical health, with lasting effects even after recovery.
Strategies to prevent or recover from burnout include reduced expectations, engaging in stimming or special interests, and spending time with understanding individuals.
The study emphasizes the importance of community wisdom and the expertise of autistic individuals in understanding and addressing burnout.
ASPIRE's research is community-engaged, aiming to improve health, well-being, employment, self-determination, and reduce stigma for autistic individuals.
The research team is developing a measure to quantify autistic burnout, which will be validated with autistic adults.
Dora Raymaker discusses the intersection of science, society, and public policy in her research, aiming for social change through science.
The ASPIRE team is seeking to collaborate with more academic and community organizations to expand the scope of their research.
The research findings on burnout will be disseminated through talks, publications, and recommendations for autistic individuals, families, and clinicians.
The study acknowledges the limitations of its small sample size and the need for further research to generalize findings to a broader population.
Transcripts
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