Neurodivergent representation: a study in three cases.
Avoiding Ableist Language: Suggestions for Autism Researchers - Kristen Bottema-Beutel, Steven K. Kapp, Jessica Nina Lester, Noah J. Sasson, Brittany N. Hand, 2021
In this commentary, we describe how language used to communicate about autism within much of autism research can reflect and perpetuate ableist ideologies (i.e....
Welcome: Mapping the Architecture of Autistic Cognition
Most people experience their minds as opaque.
Is AI on the Spectrum? Exploring the Parallels Between Artificial Intelligence and Autism Spectrum Disorder
An in-depth analysis of the similarities between AI behaviors and traits observed in Autism Spectrum Disorder, and how AI is being utilized in autism research and support.
Stimming as High-Precision System:
The Phenomenology of Autistic Self-Regulation and Its Value to Humanity
Are AI Models on the Autism Spectrum? Exploring the Parallels
Large language models are celebrated for their ability to process information quickly and generate human-like responses. However, they…
Recognizing and Releasing Internalized Neurotypical Features:
A Guide for Autistic People
Is AI on the Spectrum?
Some key traits of generative AI bear a striking similarity to autism spectrum disorder. Why does this matter?
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout
Background: Although autistic adults often discuss experiencing “autistic burnout” and attribute serious negative outcomes to it, the concept is almost completely absent from the academic and clinical literature. Methods: We used a community-based participatory research approach to conduct a thematic analysis of 19 interviews and 19 public Internet sources to understand and characterize autistic burnout. Interview participants were autistic adults who identified as having been professionally diagnosed with an autism spectrum condition. We conducted a thematic analysis, using a hybrid inductive–deductive approach, at semantic and latent levels, through a critical paradigm. We addressed trustworthiness through multiple coders, peer debriefing, and examination of contradictions. Results: Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout. Conclusions: Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability. Lay summary Why was this study done? Autistic burnout is talked about a lot by autistic people but has not been formally addressed by researchers. It is an important issue for the autistic community because it is described as leading to distress; loss of work, school, health, and quality of life; and even suicidal behavior. What was the purpose of this study? This study aimed to characterize autistic burnout, understand what it is like, what people think causes it, and what helps people recover from or prevent it. It is a first step in starting to understand autistic burnout well enough to address it. What did the researchers do? Our research group—the Academic Autism Spectrum Partnership in Research and Education—used a community-based participatory research approach with the autistic community in all stages of the study. We analyzed 9 interviews from our study on employment, 10 interviews about autistic burnout, and 19 public Internet sources (five in-depth). We recruited in the United States by publicizing on social media, by word of mouth, and through community connections. When analyzing interviews, we took what people said at face value and in deeper social context, and looked for strong themes across data. What were the results of the study? The primary characteristics of autistic burnout were chronic exhaustion , loss of skills , and reduced tolerance to stimulus . Participants described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout . From this we created a definition: Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus. Participants described negative impacts on their lives, including health , capacity for independent living , and quality of life , including suicidal behavior. They also discussed a lack of empathy from neurotypical people. People had ideas for recovering from autistic burnout including acceptance and social support , time off/reduced expectations , and doing things in an autistic way/unmasking . How do these findings add to what was already known? We now have data that autistic burnout refers to a clear set of characteristics, and is different from workplace burnout and clinical depression. We have the start of a model for why autistic burnout might happen. We know that people have been able to recover from autistic burnout and have some insights into how. What are the potential weaknesses in the study? This was a small exploratory study with a convenience sample. Although we were able to bring in some diversity by using three data sources, future work would benefit from interviewing a wider range of participants, especially those who are not white, have higher support needs, and have either very high or very low educational attainment. More research is needed to understand how to measure, prevent, and treat autistic burnout. How will these findings help autistic adults now or in the future? These findings validate the experience of autistic adults. Understanding autistic burnout could lead to ways to help relieve it or prevent it. The findings may help therapists and other practitioners recognize autistic burnout, and the potential dangers of teaching autistic people to mask autistic traits. Suicide prevention programs should consider the potential role of burnout. These findings highlight the need to reduce discrimination and stigma around autism and disability.
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout
Background: Although autistic adults often discuss experiencing “autistic burnout” and attribute serious negative outcomes to it, the concept is almost completely absent from the academic and clinical literature. Methods: We used a community-based participatory research approach to conduct a thematic analysis of 19 interviews and 19 public Internet sources to understand and characterize autistic burnout. Interview participants were autistic adults who identified as having been professionally diagnosed with an autism spectrum condition. We conducted a thematic analysis, using a hybrid inductive–deductive approach, at semantic and latent levels, through a critical paradigm. We addressed trustworthiness through multiple coders, peer debriefing, and examination of contradictions. Results: Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout. Conclusions: Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability. Lay summary Why was this study done? Autistic burnout is talked about a lot by autistic people but has not been formally addressed by researchers. It is an important issue for the autistic community because it is described as leading to distress; loss of work, school, health, and quality of life; and even suicidal behavior. What was the purpose of this study? This study aimed to characterize autistic burnout, understand what it is like, what people think causes it, and what helps people recover from or prevent it. It is a first step in starting to understand autistic burnout well enough to address it. What did the researchers do? Our research group—the Academic Autism Spectrum Partnership in Research and Education—used a community-based participatory research approach with the autistic community in all stages of the study. We analyzed 9 interviews from our study on employment, 10 interviews about autistic burnout, and 19 public Internet sources (five in-depth). We recruited in the United States by publicizing on social media, by word of mouth, and through community connections. When analyzing interviews, we took what people said at face value and in deeper social context, and looked for strong themes across data. What were the results of the study? The primary characteristics of autistic burnout were chronic exhaustion , loss of skills , and reduced tolerance to stimulus . Participants described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout . From this we created a definition: Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus. Participants described negative impacts on their lives, including health , capacity for independent living , and quality of life , including suicidal behavior. They also discussed a lack of empathy from neurotypical people. People had ideas for recovering from autistic burnout including acceptance and social support , time off/reduced expectations , and doing things in an autistic way/unmasking . How do these findings add to what was already known? We now have data that autistic burnout refers to a clear set of characteristics, and is different from workplace burnout and clinical depression. We have the start of a model for why autistic burnout might happen. We know that people have been able to recover from autistic burnout and have some insights into how. What are the potential weaknesses in the study? This was a small exploratory study with a convenience sample. Although we were able to bring in some diversity by using three data sources, future work would benefit from interviewing a wider range of participants, especially those who are not white, have higher support needs, and have either very high or very low educational attainment. More research is needed to understand how to measure, prevent, and treat autistic burnout. How will these findings help autistic adults now or in the future? These findings validate the experience of autistic adults. Understanding autistic burnout could lead to ways to help relieve it or prevent it. The findings may help therapists and other practitioners recognize autistic burnout, and the potential dangers of teaching autistic people to mask autistic traits. Suicide prevention programs should consider the potential role of burnout. These findings highlight the need to reduce discrimination and stigma around autism and disability.
The Fixed-Coordinate Self-Anchor:
Understanding Autistic Identity as Immovable Observer
Two Realities: Native Modes, Learned Social Systems, and the Foundations of Autistic Cognition
Part 1: The Architecture Overview
Geniuses with Autism & Asperger's | Hidden Talents ABA
Discover 15 inspiring figures with Autism or Asperger's, showcasing their contributions and resilience throughout history.
Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout
Although commonly described on social media by autistic people, there is little recognition of autistic burnout in the academic literature. Anecdotally, autistic burnout is described as a debilitating condition that severely impacts functioning, is linked to suicidal ideation and is driven by the stress of masking and living in an unaccommodating neurotypical world. We sought to define autistic burnout using the Grounded Delphi method. Autistic adults, experts by the lived experience of autistic burnout (n = 23), co-produced and agreed to a definition intended for clinicians and the autistic and autism communities. A thick description and conceptual framework were developed from the open-ended round 1 survey, with a high majority of agreement reached in the round 3 survey. Autistic burnout was defined as a highly debilitating condition characterised by exhaustion, withdrawal, executive function problems and generally reduced functioning, with increased manifestation of autistic traits – and distinct from depression and non-autistic burnout. Further work is needed to differentiate autistic burnout from other conditions and to build clinician understanding of the accompanying complexity to be considered in treatment planning. Lay abstract Autistic burnout has been commonly described in social media by autistic people. There is little mention of autistic burnout in the academic literature. Only one recent study has used interviews and reviews of social media descriptions to try to understand autistic burnout. Anecdotally, autistic burnout is a very debilitating condition that reduced people’s daily living skills and can lead to suicide attempts. It is suggested that autistic burnout is caused by the stress of masking and living in an unaccommodating neurotypical world. We wanted to create a definition of autistic burnout that could be used by clinicians and the autism community. We used the Grounded Delphi method, which allowed autistic voice to lead the study. Autistic adults who had experienced autistic burnout were considered as experts on the topic, in the co-production of this definition. The definition describes autistic burnout as a condition involving exhaustion, withdrawal, problems with thinking, reduced daily living skills and increases in the manifestation of autistic traits. It is important for future research that there is a specific description of the condition. In practice, it is important for clinicians to be aware that autistic burnout is different from depression. Psychological treatments for depression potentially could make autistic burnout worse. Further awareness of autistic burnout is needed, as well as further research to prove this condition is separate from depression, chronic fatigue and non-autistic burnout.
Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout
Although commonly described on social media by autistic people, there is little recognition of autistic burnout in the academic literature. Anecdotally, autistic burnout is described as a debilitating condition that severely impacts functioning, is linked to suicidal ideation and is driven by the stress of masking and living in an unaccommodating neurotypical world. We sought to define autistic burnout using the Grounded Delphi method. Autistic adults, experts by the lived experience of autistic burnout (n = 23), co-produced and agreed to a definition intended for clinicians and the autistic and autism communities. A thick description and conceptual framework were developed from the open-ended round 1 survey, with a high majority of agreement reached in the round 3 survey. Autistic burnout was defined as a highly debilitating condition characterised by exhaustion, withdrawal, executive function problems and generally reduced functioning, with increased manifestation of autistic traits – and distinct from depression and non-autistic burnout. Further work is needed to differentiate autistic burnout from other conditions and to build clinician understanding of the accompanying complexity to be considered in treatment planning. Lay abstract Autistic burnout has been commonly described in social media by autistic people. There is little mention of autistic burnout in the academic literature. Only one recent study has used interviews and reviews of social media descriptions to try to understand autistic burnout. Anecdotally, autistic burnout is a very debilitating condition that reduced people’s daily living skills and can lead to suicide attempts. It is suggested that autistic burnout is caused by the stress of masking and living in an unaccommodating neurotypical world. We wanted to create a definition of autistic burnout that could be used by clinicians and the autism community. We used the Grounded Delphi method, which allowed autistic voice to lead the study. Autistic adults who had experienced autistic burnout were considered as experts on the topic, in the co-production of this definition. The definition describes autistic burnout as a condition involving exhaustion, withdrawal, problems with thinking, reduced daily living skills and increases in the manifestation of autistic traits. It is important for future research that there is a specific description of the condition. In practice, it is important for clinicians to be aware that autistic burnout is different from depression. Psychological treatments for depression potentially could make autistic burnout worse. Further awareness of autistic burnout is needed, as well as further research to prove this condition is separate from depression, chronic fatigue and non-autistic burnout.
