Autism

Autism

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“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout | Autism in Adulthood
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout | Autism in Adulthood
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.
#autism
·liebertpub.com·
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout | Autism in Adulthood
Shared from Copilot: How Men and Women Experience Autism Differently | Psychology Today
Shared from Copilot: How Men and Women Experience Autism Differently | Psychology Today
Historically, autism research has focused on men. But women often experience autism in different ways, starting with these.
Research into autism continues to focus on men and, in the case of neuroimaging research, there is an ascertainment bias (meaning that males are specifically selected in favour of females as research subjects) of up to 15:1.4
The fact that girls with autism tend to have a more pronounced drive to be sociable suggests that it stems from the inherent differences between boys and girls in terms of their need for social relationships.
Based on surface appearances, then, girls and women with autism appear to be more socially adept than their male counterparts. This difference is one of the main reasons for the misdiagnosis, and underdiagnosis, of female autism. Autistic women have to work really hard at being sociable, but they can become so skilled at it that other people can’t see the difficulties they’re having.
In my own experience, when I first approached my GP about a diagnosis, he dismissed me as being “too normal.” My client, Sandra, experienced a similar reaction. “My GP told me that I smiled, made eye contact, and that because I was married with kids and a job which involved a high degree of social interaction, there was no way I could have autism.”
Part of the diagnostic criteria for autism in the DSM-5 is “restricted, repetitive patterns of behaviour, interests or activities”10—and in this area, girls and women often have different types of interests from men with autism. Boys may be extremely interested in collecting items and gathering information about objects or categories of things—which fits into how we typically think of autism. But while girls may display the same intense level of interest as boys, their interests tend to appear more “normal.”
Girls with autism are often interested in similar things as other girls of their age, such as celebrities, bands, or ponies. Thus, the fact that they are more interested, sometimes to the point of obsession, often goes unnoticed by parents.
Some girls develop a special interest in the workings of the brain and social interactions and some become obsessive about a “crush” or romantic partner, again displaying the intensity of interest but towards things which can be considered “normal."
Given that girls and women experience the drive to be more sociable than men and boys with autism, it makes sense that they also tend to use more, and different, camouflaging tactics than men. "Camouflaging" is a technique used by both men and women with autism—as well as many neurotypical people—to pass as “normal” in a given situation. Women with autism use techniques such as developing a script for conversations, forcing themselves to make eye contact, or avoiding talking about subjects that interest them.
Many women with autism become particularly skilled at camouflaging, to a far greater degree than other people (including autistic men). But camouflaging is linked to mental health issues—including depression, anxiety, and suicidality—and the degree to which women camouflage is closely linked to their mental health.
Because women still tend to take on a greater share of domestic responsibilities, many women with autism find it hard to manage their own autistic needs while still fulfilling their expected roles of daughter, mother, or wife. Much as they would like to pursue their special interests, carve out alone time, and lead a life that meets their needs, many women feel pressured to fulfill gendered expectations.
#autism#neurodiversity
·psychologytoday.com·
Shared from Copilot: How Men and Women Experience Autism Differently | Psychology Today