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Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout

  • university of New South Wales Australia, Sydney

Abstract and Figures

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.
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Defining Autistic Burnout Through Experts by Lived Experience: Grounded
Delphi Method Investigating #AutBurnout
Julianne M. Higgins%1,2, Samuel R. C. Arnold*%1,2, Janelle Weise1, Elizabeth
Pellicano3,2, and Julian N. Trollor1,2
%Joint first author
*Corresponding author
1Department of Developmental Disability Neuropsychiatry, School of
Psychiatry, UNSW, Sydney, New South Wales, Australia;
2Cooperative Research Centre for Living with Autism (Autism CRC), Long
Pocket, Brisbane, Queensland, Australia;
3Macquarie School of Education, Macquarie University, 29 Wally’s Walk,
Sydney, New South Wales, Australia.
Corresponding Author:
Samuel R. C. Arnold, Department of Developmental Disability Neuropsychiatry,
University of New South Wales, 30 Botany Street, Randwick, NSW, 2031,
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the
research, authorship, and/or publication of this article.
The authors acknowledge the financial support of the Cooperative Research
Centre for Living with Autism (Autism CRC), established and supported under
the Australian Government's Cooperative Research Centres Program.
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 driven
by the stress of masking and living in an unaccommodating neurotypical world. We sought to
define autistic burnout using Grounded Delphi Method. Autistic adults, experts by 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 (Geertz, 2017) and
conceptual framework was 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 traitsand 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.
Autistic burnout is an experience commonly described by autistic people (e.g., #AutBurnout,
#AutisticBurnout on social media) and reported to have substantial, deleterious effects on
people’s lives. Autistic people link autistic burnout to ‘camouflaging’ or ‘masking’, and the
exhaustion of putting on my best normal(Hull et al., 2017, p. 2519) in an unaccommodating
world. Anecdotal accounts describe aggravation of co-occurring health conditions, suicide
ideation and attempts. Yet, until very recently, this phenomenon has not garnered any interest
in the academic literature (Raymaker et al., 2020). In the words of one autistic self-advocate,
“Burnout is an integral part of the life of an Autistic person… Yet nobody, apart from Autistic
people, seems to know about it” (Rose, 2018).
First described by Freudenberger as “becoming exhausted by making excessive demands on
energy, strength, or resources in the workplace” (1974, p. 159), non-autistic burnout has since
resulted in a wealth of research (Heinemann & Heinemann, 2017; Korczak et al., 2010;
Kristensen et al., 2005; Maslach & Leiter, 2016). It is not classified in the DSM-5 and appears in
the ICD-10 and ICD-11 as an occupational phenomenon and is not classified as a specific
medical condition (World Health Organization, 2019), and is instead included in the chapter
listing reasons for which people contact health services that are not health conditions. Critically,
drawing on the seminal work of Maslach (Maslach & Leiter, 2016), the ICD-11 characterises
burnout specifically within the context of unmanaged work-related stress, which results in
three components of perceived exhaustion, mental distance or cynicism from one’s
employment, and perceived reduced professional efficacy. Complicating this area further, the
Swedish version of the ICD-10 incorporates “exhaustion disorder”, attempting to facilitate
diagnosis of more significant burnout, attributed to work or personal life (Adamsson &
Bernhardsson, 2018), with criteria covering exhaustion, reduced mental energy, concentration
problems, reduced functional capacity, emotional instability, sleep problems and physical
symptoms including increased sensitivity to sound. Others have also argued for burnout not
limited to occupational stress (Grossi et al., 2015). There are significant overlaps with conditions
such as “chronic fatigue syndrome” which appears in both the international versions of ICD-10
and 11, with elements of exhaustion and concentration problems common across these
diagnoses, though no firmly established biomarkers, and diagnosis by exclusion.
In contrast to the description in the ICD-11, the academic definition of burnout remains “vague
and blurry” (p. 10, Heinemann & Heinemann, 2017; Korczak et al., 2010). The construct has
largely come to be defined by the most influential and popular measurement tool, the Maslach
Burnout Inventory (MBI; Maslach et al., 1986) and its variants. However, a plethora of
measurement tools have been developed each having unique conceptualisation and areas of
emphases (e.g. Copenhagen Burnout Inventory; Kristensen et al., 2005; School Burnout
Inventory; Salmela-Aro et al., 2009; Athlete Burnout Questionnaire; Sharp et al., 2010). There is
ongoing debate about whether burnout constitutes a distinct clinical diagnosis, specific to
occupational stress and separate from depression (Bianchi et al., 2015; Heinemann &
Heinemann, 2017). On the one hand, it is argued that burnout is a distinct (Maslach & Leiter,
2016) and useful target for further research and intervention given the high prevalence rates
and social familiarity with which burnout is discussed in many industrialised countries. On the
other hand, and contrary to earlier research (Schaufeli et al., 2001), a recent large study
(n=3,113) concluded that the purported burnout-depression distinction is artificial (Bianchi et
al., 2020). This study used three burnout measures including two versions of the MBI, as well as
the Patient Health Questionnaire – 9 (PHQ-9; Kroenke et al., 2001), finding a single overarching
depression factor. Another large study (n=1,258; Verkuilen et al., 2020) using structural
equation modelling on the PHQ-9, MBI and other tools also concluded burnout lacked
discriminant validity and recommended clinicians assess for depression when individuals
present with a complaint of burnout.
Whilst existing research on burnout is isolated to the workplace, autistic burnout is described
anecdotally as pervasive and appears to be a response to coping with the basic demands of
everyday life. Considering the symptoms reported, autistic burnout may not be simply a
variation of mainstream (non-autistic) burnout phenomena or depression. In contrast to work-
related non-autistic burnout, it is suggested the fatigue of ‘masking’ and / or ‘camouflaging’
autistic behaviours, and stress of living in an unaccommodating neurotypical world (Frost et al.,
2019; Hull et al., 2017; Livingston et al., 2019; Mandy, 2019) are the key drivers of autistic
burnout. According to autistic advocates, burnout can involve the progressive loss of speech,
social skills, memory capacity, executive function, self-care capabilities and a reduced ability to
cope with sensory overload (Boren, 2017; Rose, 2018). Autistic advocates have unsurprisingly
called for more research on this phenomenon (Rose, 2018).
The only study conducted thus far reviewed (n=19) social media accounts, and conducted (n=9)
interviews focused on autistic burnout, in addition to secondary analysis of (n=10) interviews
from a previous employment study (Raymaker et al., 2020). Using thematic analysis and a
community-based participatory research approach, they defined autistic burnout as:
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
Anecdotally, autistic burnout has also been misdiagnosed as depression and, whilst symptoms
can mirror those of depression, Raymaker et al. (2020) suggest that it is a distinct condition.
The definition published by Raymaker et al. (2020) was not available at the time of our study
and has yet to be validated. Using a Grounded Delphi Methodology (GDM; Howard, 2018), our
study, co-produced by autistic and non-autistic researchers, aimed to develop a consensus
definition of autistic burnout for clinical and research purposes, differentiated from non-autistic
burnout and depression. A definition of autistic burnout by consensus of ‘experts by lived
experiencewould (i) provide acknowledgement and formal recognition, (ii) enable research
towards further understanding its causes, correlates, and consequences, and (iii) identification
of appropriate support strategies and environmental accommodations. In recognition of their
expertise, we refer to ‘experts’ rather than ‘participants’ throughout this article.
Experts were recruited through social media advertisement and the Australian Longitudinal
Study of Autism in Adulthood (ALSAA; Arnold et al., 2019) quarterly newsletter. To be included,
adults had to: 1) have an independent clinical diagnosis of autism; 2) be living in Australia; 3)
have had a personal experience of autistic burnout; 4) have the ability to give independent,
informed consent; and 5) be able to complete surveys with minimal assistance. Experts gave
consent via an online registration form, and then were given an expert identifier code and link
to the round 1 survey. We provided experts with the option to complete the surveys online or
via hardcopy or email. The study was approved by the [blinded for review]. Experts were given
a gift card (AUD $50) for each round of survey participation.
Twenty-seven people registered, all of whom met the above inclusion criteria. One person
without a formal diagnosis of autism expressed interest but was excluded. Four experts
withdrew with most citing fatigue from burnout, which prevented participation, leaving 23
experts (85%) who responded across three rounds of survey (round 1: n=21, round 2: n=22,
round 3: n=21). The majority of participating experts reported Caucasian ethnicity, with others
reporting Asian (n=1), Hispanic (n=1) and Germanic (n=1) ethnicity. To ensure accessibility, we
invited experts who did not complete round 1 or only gave partial responses to participate in
later rounds. Experts ranged in age from 27 64 years (M age = 42.8 years, SD = 9.9). Age at
time of diagnosis ranged between 4 61 years (M age = 36.8 years, SD = 12.8). The majority of
experts reported female gender (n=16; 69.6%) with a smaller proportion of males (n=6; 26.1%)
and one person reporting non-binary gender (4.3%). At the time of the round 1 survey, 87% of
the experts had attained a tertiary education and 13% had attained a secondary education.
Most of the sample was employed (full-time employment: 43%, part-time employment: 30%),
while the rest were unemployed (17%), volunteers (4%) or retired (4%).
Re-verification of autism diagnosis was not undertaken due to the geographic spread of
participants across Australia and resource availability. All experts, however, scored above cut-
off on the Autism Quotient-28 (AQ-28; Hoekstra et al., 2011) (cut-off >65; M = 92.3, SD = 10.2,
range 71108).
The current study adopted the Grounded Delphi Method (GDM; Howard, 2018), which is a
relatively new methodology incorporating aspects of grounded theory into Delphi study
processes (Päivärinta et al., 2011). The combination of Delphi method, useful in areas with little
established literature (Howard, 2018), and grounded theory, useful for theory building
(Päivärinta et al., 2011), was well-suited to address the aims of the current study.
Experts completed three separate rounds of survey, over a six-month period. Grounded theory
approaches to analysis were applied to the open-ended responses arising from the round 1
survey to develop an initial draft definition of autistic burnout. In round 2, experts were asked
to endorse and comment on the elements of the draft definition created by the researchers
based on the round 1 responses. In round 3, experts were asked to endorse changes identified
from the round 2 survey. See Figure 1 for a study flow outline.
To aid anonymity, experts were not linked across rounds. In rounds 2 and 3, consensus required
at least 50% quantitative data agreement, with no major qualitative data disagreement. In
comparison to the majority of Delphi studies, which often use a consensus rate of 80%, we
reduced the criterion to be more inclusive in recognition of the heterogeneity of autistic adults.
In each round, a summary of findings from the previous was shared with experts, prior to
surveying their responses to the developing definition.
The round 1 survey gathered demographic and diagnostic information. It then asked a series of
open-ended questions, covering what autistic burnout means to the person, their experience(s)
of autistic burnout, recovery, impact on autistic traits and changes in self-image (see
Supplementary Materials). To compare with concepts of mainstream burnout, additional open-
ended questions asked about confidence in abilities, cynicism and depersonalisation. A specific
open-ended question probed for differences between autistic burnout, depression and being
sick. A final question asked if any support was received to complete the survey. The survey
began and ended with instructions including contacts for queries or if the expert experienced
The round 2 survey asked a series of Visual Analogue Scale (VAS) questions on agreement for
each element, or sub-element, of the draft definition arising from round 1. The VAS items were
adaptations of a 7-point Likert scale typically used in Delphi studies, though presented on a
sliding scale from 0 (strongly disagree) 100 (strongly agree) in an attempt to be more autism
friendly, with the word ‘Agree’ appearing at the 80% mark. VAS question blocks linked directly
to sections of the draft definition. Question blocks covered onset, characteristics, additional
elements, recovery and differential diagnosis, with each question block ending with an open-
ended question asking for comments or suggestions (see Table 3 and Supplementary materials).
There were also multiple-choice questions relating to duration, and a final open-ended overall
comments question.
To gain endorsement to changes made to the definition by the research team arising from
round 2, the round 3 survey asked similar VAS question blocks followed by an open-ended
comments question (see Table 4). There was also a final VAS question and open-ended
question asking how much the draft definition describes your experience(s) of autistic burnout.
Autistic burnout was identified as the topic of interest by the autistic (JH) and non-autistic (SA)
co-authors, with GDM identified conducive to theory development and the exploratory nature
of this autistic burnout study. This particular study positions autistic adults as experts by
experience. JH and SA jointly worked through all stages of the research to accommodate
“different dispositional outlooks and personal conceptual understandings” (Milton et al., 2018,
p. 1) likely to occur between neurotypical and neurodivergent researchers. JH and SA
collaborated in all stages of the research from grant and ethics applications, development of
surveys, definitions and analyses, and included frequent video conferencing throughout the
project. At times where resolution was difficult to achieve, the input of JW was sought. Critical
reviews, input and support was provided by all co-authors.
Data Analysis
Qualitative data were processed using NVivo 12 and quantitative data using SPSS 26, STATA 15
and Excel.
From the open-ended items in the round 1 survey, JH and SA jointly analysed responses. Peer
researcher JH approached the data analysis from a background of being a late-diagnosed
autistic. JH has been involved in research co-production for several years, including consulting
to the Autism CRC and the Australian Longitudinal Study of Autism in Adulthood (ALSAA; Arnold
et al., 2019) and has personally experienced autistic burnout. SA approached data analysis from
the background of being a psychologist and disability researcher and clinician. Following
grounded theory concepts, an inductive approach to coding was used based on semantic and
latent meanings, seeking to identify an overall conceptual framework and basis for a definition
of autistic burnout. To ensure no dominance of neurotypical or neurodivergent interpretations,
open coding was first completed independently by JH and SA for all responses, then, across
multiple video conferencing sessions, a consensus on the coding framework was reached and
axial coding completed. There were also multiple sessions jointly coding the data. A high-level
of consensus in coding between SA and JH was evident from recoding of a third of the
responses using the finalised coding framework. JH went on to complete the coding of
remaining responses. A brief journal log was kept for audit trail purposes.
JH and SA drafted an initial definition of autistic burnout which was then shared with all authors
for review and input, prior to being shared with experts and used as the basis for the round 2
survey. In the round 2 analyses, qualitative responses were subjected to a basic template
analysis (Brooks et al., 2015), focused on identifying whether changes to the definition were
required. We calculated the percentage of experts who agreed or strongly agreed with each
item. Based on qualitative responses and items that did not reach the agreed quantitative
consensus criteria, a refined definition was developed. This definition was shared again with the
experts and formed the basis of the round 3 survey. To determine if consensus levels were
reached, round 3 analysis followed the same template analysis of qualitative data and
descriptive analysis of quantitative data.
Round 1
Analysis of qualitative data generated a theory of autistic burnout composed of interlinked
core, major and ancillary categories, an integrative diagram is presented in Figure 2. Each
category had several subcategories (see Table 1), a brief narrative synthesis of these categories
and subcategories is presented below (see Supplementary Materials Table A for a glossary of
words used in naming subcategories and example quotes). Notably, no experts mentioned
occupational stress in their direct response to what autistic burnout means to them. Instead,
they commonly referred to the stress ofbeing in a world that is not your world”.
Table 1: Categories and subcategories from round 1 survey
(E1) Autism pre-diagnosis
(E2) Supportive environments
(E3) Disempowered
(E4) Lack of control
(E5) Camouflaging - masking
(O1) Social interaction
(O2) Misunderstanding by and of others
(O3) Unexpected change
(O4) Cognitive overwhelm & overload
demands exceeding capacity
(O5) Sensory overwhelm & overload
(O6) Work demands
(I1) Increased manifestation of autistic traits
(I2) Difficulty with emotion processing
(I3) Decreased functional capacity
(I4) Cognitive disruption
(I5) Confusion, dissociation
(I6) Exhaustion
(I7) Negative descriptions
(I8) Self-image
(I9) Trusting others (cynicism)
(I10) Withdrawal self isolation
(I11) Suicide and Suicidal Ideation
Recovery (Strategies)
(R1) Tenacity persevering
(R2) Space needed
(R3) Self-knowledge
(R4) Time needed
(R5) Planning pacing
(R6) Lack of appropriate support
(R7) Incomplete recovery
(R8) Unique recovery strategy
Temporal qualities
(F1) One-off
(F2) Intermittent
(F3) Regular – ongoing
(F4) Days - hours
(F5) Weeks – months
Differentiating from
(C1) Similarities
(C2) Differences
Core Category: Energy
Energy was the core overarching category; autistic burnout is directly related to the energy
reserves of the autistic person at any point in time. Energy grouped together many concepts
that contributed to or detracted from the expert’s “video game energy bar”. It was central to
their autistic existential experience of burnout: “Autistic burnout is when I no longer have the
energy reserves necessary to act Neurotypical”. This category was evident across onset, impact
and recovery from autistic burnout.
For several experts, autistic burnout experience was pre-autism diagnosis (E1): “Afterwards, I
saw a psychologist who referred meI was diagnosed with [High Functioning Autism] HFA”,
whilst others reconceptualised their experience after diagnosis: “Before knowing I was autistic,
I believed I was depressed but now as I’m understanding more about autism, I think I was
actually in autistic burnout”. Having a supportive environment (E2) impacted positively on
energy levels, for example, “I have a good support from my family who have carried me along
/forward over the 5 years”, in contrast, “I reached out for help from others but everyone is too
busy with their own issues, including medical professionals”. Disempowerment (E3) was evident
and energy draining for several experts: “I was given responsibility as safety officer at my
workplace... gained the enmity of my co-workers has made me think I'd done the wrong thing
after it had felt I’d done the right thing”. Similarly, experts reported an exhausting and
frustrating lack of control (E4): “I realised I was fighting battles... it did not seem to matter what
I did I could not get people to listen or support us in the manner we wished. It was always
under someone else’s ridiculous terms or not at all”.
In everyday life, the energy-draining nature of camouflaging masking (E5) may not be visible
to non-autistics: “People praise us for what we are capable of and what we have achieved
thanks to our performance… but no one stops to consider the toll it takes on us”. However, in
onset and impact the amount of work put in to hide being autistic becomes apparent: “being in
a world that is not your world and you have to change how you exist to make it all work.
Ultimately, experts reported not having the energy reserves to act and a state of stasis was
reached. Withdrawal from all interpersonal interactions occurred allowing the recovery process
to commence restoring energy reserves: “I needed that time to recover and be myself
Major Category: Onset
Onset incorporated subcategories of social interaction (O1): “social situations… you need to be
kind of small-talky, and have to think of the right things to say and not saying anything too
weird or make any silly jokes and look people in their eyes are exhausting. Experts felt that it is
within social interaction and communication that misunderstanding by and of others (O2) can
occur. Misunderstandings for autistics cause stress, use energy and lead to onset of burnout:
“strong increase in ability to translate between native ‘autistic’ and ‘neuronormal
communication and mannerisms. Strong decrease in the tolerance for need to translate”. For
some, unexpected change (O3) was the trigger for onset of autistic burnout: “Alternatively a
large life event tips you way over because you cant process this information as easy as others”.
Experts referred to stressful life events including moving to a new country or accommodation,
caring for others and co-occurring health problems, though “everyday stressors” were more
commonly referenced. Being overloaded by cognitive inputs, or overcome by the intensity of
life, was described in cognitive overload & overwhelm demands exceeding capacity (O4): “Not
being able to function due to being overwhelmed by life (particularly being autistic but having
to live as a neurotypical)”. Overloading was also related to sensory overload & overwhelm (O5)
and social interaction (O1), succinctly grouped together by some experts; “Autistic burnout
means overload from sensory or social interactionsand “I think it may be a longer/more
severe form of ‘overwhelm’. Unable to function, too many inputs that can’t be processed, both
sensory and social”. Finally, many commented on work demands (O6) as a contributing factor:
“I was working long hours on a major project, also managing other IT tasks, with continual
frustration with my CEO and third-party companies undermining my authority”.
Major Category: Impact
Impact ranged in severity, with an overall increased manifestation of autistic traits (I1): “I would
just sit and cut pieces of leather into strips for hours on end, alone and in silence”. Experts also
reported increased sensory sensitivity and aggravation of coexisting conditions, such as
insomnia, anxiety, gastrointestinal problems: “I had always experienced depression and
anxiety... But they built to self-injurious levels”. Importantly, reduced energy included a
reduced ability to mask: “I couldn't keep acting the way people expected” with communication
difficulties: “I experience selective mutism”. Burnout also impacted difficulty with emotion
processing (I2), with some experts highlighting increased sensitivity, where others noted a
perceived emotional numbness as opposed to heightened emotions: “Fight or flight reflex
triggered by small things”, I felt entirely numb, “completely emotionally numb, “not wanting
to feel emotions”. Many commented on overall decreased functional capacity (I3), to the point
of complete incapacitation: “I didn’t really want to get out of bed each day. I wasn’t able to do
normal everyday things such as showering, cooking, cleaning”. The impact on functioning
extended to cognitive disruption (I4) of some form: “Mental exhaustion”, “I forget everything
I'm good at and see no hope for the future”. The cognitive disruption could be extreme,
experienced as confusion, dissociation (I5), with some disconnecting from consciousness
altogether: “I became unable to think, I'd cry all the time and go into a kind of fugue state. I
thought I was going insane” and “I walked away from work and was found many hours later by
a security guard… I spent the next 3 weeks in the psychiatric wardI felt numb I have barely
any memory of the walk I took”.
Key to understanding the impact of autistic burnout is the exhaustion (I6) and loss of energy
experienced, with one expert reporting that they felt “drained, depleted, fatigued”. There were
many negative descriptions (I7) of events: “it was horribleand pervasive: “everything I have to
do feels like a weight pressing on my whole body”. Self-image (I8) was negatively impacted,
with comparisons to non-autistics: “it re-inforced that I will never be able to function at the
same level as someone without ASD”. Self-hatred was evident, alongside hopelessness and a
reduction in trusting self and self-confidence: “Strongly increased sense of hopelessness, loss of
purpose in life and sense of self”. There was also a loss of trusting others (cynicism) (I9): “I
became very untrusting of those I should trust (family and friends)”. A repeated subcategory,
linked with recovery but more pertinent to impact, was withdrawal self isolation (I10): “I
know that I need to just exist in my own bubble for a while, and every second that I am not is a
second that I feel worse”. Of most concern, was the frequent references to suicide and suicidal
ideation (I11): “confirmed my inconsequentiality to society and existence, “even attempting to
kill myself a number of times”.
Major Category: Recovery
Recovery (strategies) was the last major category, with some experts referring to tenacity
perseverance (R1) required to survive: “I fought. Constantly... I never ever gave up”. A strong
subcategory was the space needed (R2) to recover and replenish energy, often including
reduced social interaction or escapism: “If I can shut out sensations and lie still for an hour, I
usually bounce back a bit but mostly I will need to be home for 2-4 days, the first day or two
doing nothing but watch videos or something inert”. Many commented on building new self-
knowledge (R3) and new understanding of self-management strategies in guiding their
recovery: “A big part of avoiding burnout is understanding your ability to cope at any given
time. If ignored, repeatedly, then you will burnout and shutdown”. There was time needed (R4),
being “unfiltered” or spent on particular interests: “I need time to recharge myself away from
people doing my projects”. Many recovery strategies were identified, including planning -
pacing (R5): “Learn to pace yourself and not do too much”. Several commented on a lack of
appropriate support (R6) making full recovery uncertain: “fear for my future when these events
happen because no-one really gets it and no-one can really help”. Some suggested they never
returned to their previous levels of functioning with incomplete recovery (R7): “you don’t know
how much you will recover. This is quite scary if you are intelligent, not because intelligence is
lost, but because it is harder to express that intelligence”, “Believe this is how it will always be”.
Some mentioned a unique recovery strategy (R8) that was part of their experience: “I began a
national support group”, “got a nightshift job where I had minimal contact with people… I need
2-3 hours a day isolated to recharge”.
Ancillary Category: Temporal Qualities
There were mixed reports on frequency. One expert reported they had only experienced a one-
off (F1) burnout experience. Others referred to intermittent (F2) experiences: “Not the first
time I have dealt with burnout, usually every 3-5 years, and several referred to regular -
ongoing (F3) chronic burnout experiences, and others were still in recovery: “I still have times
of burnout. Much of my life is in shutdown mode”. Duration was also highly varied, from days
hours (F4): “It varies. Sometimes, it can last all day, sometimes only a few hours or so” to
reports of weeks – months (F5) or even years: “This one lasted for close to a year. It's hard to
tell when it ended as it did so gradually, “5 years or more”.
Ancillary Category: Differentiating from Depression
There were many similarities (C1) to depression and illnesses: “Frequent symptoms of
depression and anxiety including sleep difficulties, lethargy, frustration, hopelessness”. The
significant overlap and interrelatedness of depression and burnout meant for some it was
difficult to pinpoint: “It can be hard to tell the difference”. Differences (C2) suggested included
“symptoms such as sensory sensitivity and the need to isolate in order to recover is different to
typical depression” and it “is more intense. A complete mind, body, soul thingit’s everything.
There was suggestion that “depression is the side effect with burnout being the cause”.
Round 2
When experts reviewed the definition synthesised from the round 1 results, only one element
did not meet the quantitative consensus criteria: “Time spent reintegrating with Self…” (see
Table 2), and was subsequently modified to specify “in particular from chronic burnout”. Nine
elements were flagged for revision based on qualitative comments received, flagged items are
noted (B) in Table 2. The additional survey questions that interrogated the duration and
frequency of burnout experiences did not lead to a clear resolution on these elements (see
Table 3).
Table 2: Results of round 2 survey, excluding duration items
How much do you agree the following elements should be
part of the definition of autistic burnout?
Number agree
or higher (%)
rating (SD)
based on
Fatigue from camouflaging or masking autistic traits
18 (81.8)
Overload of cognitive inputB
15 (68.2)
Sensory environments unaccommodating to autistic
15 (68.2)
Onset may be in combination with
18 (81.8)
Repeated unexpected changesB
18 (81.8)
Social environments unaccommodating to autistic
17 (77.3)
Overload of work or activity demands
18 (81.8)
A severely debilitating condition
17 (77.3)
Significant mental and physical exhaustion
21 (95.5)
Social withdrawalB
20 (90.9)
With one or more of the followingB
11 (50)
Significant reduction in social, occupational, educational,
academic, behavioural, or other important areas of
19 (86.4)
Confusions, difficulties with executive functioning,
dissociative and/or fugue states
17 (77.3)
Increase in autistic traits (e.g. sensory sensitivity, repetitive
or stimming behaviour, difficulties engaging or
communication with others)
18 (81.8)
The condition is not better explained by a psychiatric illness
such as depression, psychosis, personality disorder, trauma-
and stressor related disorders
14 (63.6)
Withdrawal from all social contactB
14 (63.6)
Withdrawal from externally imposed demands
19 (86.4)
Time spent re-regulating by stimmingB
14 (63.6)
Time spent reintegrating with Self and external world via
gradual passive to active engagement in activities e.g.
moving from listening music to playing music…
10 (45.5)
A gradual return to daily activities and responsibilities
14 (63.6)
Differentiated from depressive episode. Autistic burnout
has similarity to depression, though onset is primarily
related to social interaction demands / masking fatigue, and
15 (68.2)
Differentiated from mainstream burnout due to onset and
manifestation not being solely related to employment
11 (50)
Differentiated from autistic ‘meltdown’ experiences due to
severity and duration of exhaustion / fatigue
16 (72.7)
ARevised based on Qualitative (Qual) commentary or Quantitative (Quant) VAS results
BElement that was revised for next round
Table 3: Results of round 2 survey duration items
Additional duration questions
n (%)
Shortest length of time you would
consider to be an episode of
2 (9.1)
1 day
7 (31.8)
2-3 days
2 (9.1)
4-6 days
4 (18.2)
A week
1 (4.5)
A fortnight or longer
5 (22.7)
Other (describe)
1 (4.5)
Experienced brief or intermittent
episodes, prior to extended burnout?
2 (9.1)
NA (only short episodes)
3 (13.6)
No (only experienced weeks or
17 (77.3)
Round 3
All elements of the revised definition met the consensus endorsement criteria in round 3, with
no additional qualitative data that suggested need to further refine the core definition (see
Table 4 and Figure 3). Some qualitative data raised concepts of interest that were outside of
scope; respecting participant expertise, these concepts are reported in Table 5. As consensus
was met according to our established criteria in the third round of survey, and 19 of 21 experts
(90%) agreed or strongly agreed that the definition described their experiences, theoretical
saturation was achieved and a fourth round was not conducted.
Table 4: Results of round 3 survey
How much do you agree that the following are useful changes to the
draft definition of autistic burnout?
agree or
higher (%)
Mean VAS
rating (SD)
adding 'interpersonal interactions'
19 (90.5)
added a definition for cognitive input, that it refers to 'thinking and mental
18 (85.7)
added 'other additional stressors or changes'
18 (85.7)
added 'Onset and episodes of autistic burnout may interact with co-
occurring physical and / or mental health conditions'
18 (85.7)
changed 'social withdrawal' to 'interpersonal withdrawal'
20 (95.2)
changed to 'increased intensity of' autistic traits, and added 'and/or
reduced capacity to camouflage/mask'
21 (100)
95.57 (6.34)
deleted the statement regarding duration, and added instead that
'Extended or chronic episodes of autistic burnout may be preceded by
brief or intermittent episodes.'
15 (71.4)
added 'Whereas autistic meltdown can involve overpowering emotions,
autistic burnout is more associated with emotional numbness'
13 (61.9)
added 'in particular from chronic burnout'
13 (61.9)
added 'and / or interpersonal'
18 (85.7)
added 'Down time spent on personal interests'
16 (76.2)
added 'routines'
14 (66.7)
Overall, how much do you agree that the second draft definition describes
your experience(s) of autistic burnout?
19 (90.5)
89.14 (9.48)
Table 5: Further insights into the burnout experience identified by experts for future research
People may not realise the extent of burnout, as the person may have brief energy bursts
usually related to positive stimulation, though overall be debilitated.
Burnout has an appearance of an inbuilt survival mechanism.
Without time to recover from burnout, removing external or self-imposed pressure to return
to normal functioning too early, later burnouts or negative impacts on mental and physical
health may be experienced.
Autistic Burnout is a severely debilitating condition with onset preceded by fatigue from camouflaging or
masking autistic traits, interpersonal interactions, an overload of cognitive input*, a sensory
environment unaccommodating to autistic sensitivities and / or other additional stressors or changes.
Onset and episodes of autistic burnout may interact with co-occurring physical and / or mental health
conditions. The following criteria must be met;
1. Significant mental and physical exhaustion
2. Interpersonal withdrawal.
With one or more of the following;
1. Significant reduction in social, occupational, educational, academic, behavioural, or other
important areas of functioning.
2. Confusion, difficulties with executive function**, and/or dissociative states.
3. Increased intensity of autistic traits and/or reduced capacity to camouflage/mask e.g. increased
sensory sensitivity, repetitive or stimming behaviour, difficulty engaging or communication with
The condition is not better explained by a psychiatric illness such as depression, psychosis, personality
disorder, trauma- and stressor-related disorders.
Extended or chronic episodes of autistic burnout may be preceded by brief or intermittent episodes.
Differential diagnosis***;
Depressive Episode. Autistic burnout has similarity to depression, though onset is primarily related to
social interaction demands / masking fatigue, and overload. In autistic burnout, social withdrawal is a
recovery strategy. Behavioural activation treatment approaches are not recommended.
Mainstream (non-autistic) burnout. Mainstream burnout onset and manifestation is typically related
solely to employment. In autistic burnout, social interaction / camouflaging and / or unsupportive
sensory environments are elements of onset. In contrast, cynicism, if evident, is related to non-autistic
people rather than employment. The impact may extend to changes in autistic traits and, for some,
Autistic ‘meltdown’. Autistic burnout differs from meltdown experiences due to severity and duration of
the exhaustion or fatigue. Whereas autistic meltdown can involve overpowering emotions, autistic
burnout is more associated with perceived emotional numbness.
*Cognitive input, refers to thinking and mental processing
**Please note, executive function refers to “the mental capacity to focus attention, to process
information while completing other tasks, and to plan and remember instructions”
***Differential diagnosis is the process of differentiating between two or more conditions which share
similar signs or symptoms.
Data available suggest recovery, in particular from chronic burnout, may be assisted by
1. Withdrawal from social and / or interpersonal contact and externally-imposed demands,
potentially requiring convalescence during an in-patient admission.
2. Time spent on personal interests
3. Time spent re-regulating e.g. stimming
4. Time spent reintegrating with Self and external world via gradual passive to active engagement
in activities e.g. moving from listening to music to playing music; from watching video gaming to
playing video games
5. A gradual return to daily routines, activities and responsibilities.
Recovery may be incomplete in comparison to previous functional capacity.
Figure 3: Defined criteria for Autistic Burnout
Autistic adults face daily stressors living in a neurotypical world. This accumulation of stress can
trigger the debilitating condition, autistic burnout. Using GDM, which incorporates grounded
theory with the Delphi method, experts reached a consensus on a definition for autistic burnout
(see Figure 3). Autistic adults, as experts by experience, described a condition of autistic
burnout that was not linked primarily to occupational stress and differed in severity and
breadth of symptomology from literature reporting on non-autistic burnout. A large majority of
experts agreed that the definition reached described their own burnout experience(s). A thick
description (Geertz, 2017) and conceptual framework describing autistic burnout was
developed from the open-ended survey results in round 1 (see Figure 2). Importantly, GDM
enabled a rigorous member-checking process of the research team’s interpretations.
On a surface level, autistic burnout shares commonalities with all three elements of non-autistic
burnout described by Maslach (1986)exhaustion, cynicism and work efficiency. Exhaustion is
common in both, cynicism is more so directed towards interactions with neurotypical people as
opposed to employment, and efficacy is more in relation to everyday functioning. Although
there may be a withdrawal or distancing from occupation in non-autistic burnout, there is a
more complete social isolation for many experiencing autistic burnout. Non-autistic burnout
does not appear to include the cognitive disruption that many of our experts reported. Unique
characteristics of autism appear to drive autistic burnout, particularly social interaction
differences and sensory sensitivities. Where ‘work engagement’ (Leiter & Maslach, 2017) has
been suggested as a potential protective factor in non-autistic burnout, a concept of
‘engagement’, in relation to autistic individualsability to sustain in depth focus, may be both a
protective factor and a risk factor for autistic burnout when that engagement is interrupted.
There may be more commonality of autistic burnout with the revised understanding of non-
autistic burnout emerging from the work of Tavella et al. (2020), which also includes social
withdrawal and concentration problems within its core factor. More research will be needed to
determine commonality and differences between autistic and non-autistic burnout, though we
hypothesize unique stressors and treatment needs of autistic people will support a
differentiation of these concepts.
Raymaker et al. (2020) arrived at their definition of autistic burnout, published after this study
had commenced but prior to the manuscript development, using interview and social media
data and a community-based participatory research process. Instead, we positioned autistic
adults as experts by experience and co-produced a definition using GDM. Numerous similarities
are evident particularly in the broader qualitative descriptions (e.g., chronic life stress,
exhaustion, loss of functioning and reduced tolerance of stimuli) – but important differences
exist in the definition produced (e.g., withdrawal, depersonalisation, masking). Several
differences may stem from the presentations of the definition. Raymaker et al. (2020) based
their definition on the (non-autistic) burnout definition in the ICD-11. Aiming to appeal to
clinicians who might be supporting autistic adults, we chose to utilise the DSM-5 format, that
allows a more detailed description of the condition, as well as differential diagnosis
considerations. This is particularly important given (non-autistic) burnout has been criticised for
its vague definition that cannot be differentiated from depression (Korczak et al., 2010). Similar
to the complex relationship between (non-autistic) burnout and depression (Maslach & Leiter,
2016), our participants suggested that autistic burnout is a cause of depression. A detailed
description of autistic burnout is needed, particularly if determining comorbidity with
depression, where the majority of criteria are in common depending on interpretation. For
example, separating exhaustion from a continually depressed mood, and an inability to
undertake activities from a diminished interest in them, or anhedonia. Differential diagnosis will
be further complicated by the increased alexithymia experienced. We suspect that depression
will be frequently comorbid with autistic burnout, though the current findings suggest that
treatment recommendations should differ.
Of the seven differences between autistic burnout definitions to be noted, the first and primary
deviation in definitions is the central role of withdrawal, which was only noted as a recovery
strategy by Raymaker et al. (2020). Our experts consistently reported being compelled to
withdraw and self-isolate as a key element of their burnout experience. Further work is needed
to determine if this is simply a difference in interpretation of qualitative data, or a difference in
understanding the core phenomena. Second, Raymaker et al. (2020) place “a mismatch of
expectations and abilities” (p. 140) central to their definition. This concept is subsumed within
our notes on onset relating to life stressors, though we would suggest that the mismatch is the
environment within which the autistic person is expected to perform. The wording used in
Raymaker et al. (2020) also is suggestive of a limitation of autistic people as opposed to a
limitation of environmental conditions. ‘Treatment’ needs to address the environments within
which the autistic person is expected to perform, not simply position the problem within the
person. Third, masking and camouflaging, although being described as the “most prominent life
stressor” (p. 137, Raymaker et al., 2020), and recent literature highlighting its psychological
impact (Cage & Troxell-Whitman, 2019; Hull et al., 2017), does not appear in their brief
definition. Fourth, the Raymaker et al. (2020) definition mentions “loss of function” (p. 140).
Given the substantial cognitive impact reported by some participants, we felt it important to
note the dissociative states some experienced. Fifth, the increased sensory sensitivity described
by our participants extended to a reduced ability to mask or increased intensity of autistic
traits. Sixth, we identified appropriate support as being an element of recovery, whereas
adequate support as described by Raymaker et al. (2020) does not capture those times when
support persons, despite being well intentioned, can actually exacerbate the burnout
experience or duration. Finally, where Raymaker et al. (2020) specified 3+ months duration,
duration parameters from our experts were inconclusive.
It was a conscious decision by the research team to choose a clinical (DSM-5) format for
drafting the definition as a means to build recognition and awareness amongst clinical
professionals as well as awareness amongst the broader autistic and autism communities. Our
results highlight that routine treatments for depression, such as cognitive behaviour therapy
and behavioural activation, may be contra-indicated within autistic burnout, even though these
conditions may co-exist. Our experts described the need for withdrawal and downtime for
recovery, somewhat antithetic to behavioural activation. With cognitive overload being
described as a key precursor of autistic burnout, cognitive-focused therapies could be
counterproductive. There is a need, however, to ground these suggestions in experimental
studies, and we believe there is a role for appropriate psychological support in recovery from
autistic burnout. Autistic people daily face adversity in social interaction, as described in
Milton’s (2012) double empathy problem, and underestimation of their self-awareness and
ability to recognise the perspective of others as demonstrated by Heasman and Gillespie
(2018). Overall, our results highlight the need to address social issues and sensory
environments, to reduce stressors that can lead to autistic burnout or suicidal ideation for
autistic adults.
Given that no definition of autistic burnout existed when conducting the study, we simply
recruited for autistics who had experienced autistic burnout, and deliberately did not provide
description of what that might be. This meant the sample could potentially have included
people who may not meet criteria for autistic burnout. Within our available resources and given
the geographic spread of Australia we were not able to conduct clinical interviews with experts
to identify and remove those who may be reporting on another condition, or to reconfirm
formal autism diagnosis. Future research is needed that incorporates an element of structured
clinical assessment, and measurement of co-occurring conditions, to validate the definition and
differential diagnosis. Given heightened alexithymia (Kinnaird et al., 2019), proxy respondents
may be of additional value, though the double empathy problem (Milton, 2012) and critiques of
perspective taking raised by Heasman and Gillespie (2018) will need to be considered in
analysis. Longitudinal research looking at coping strategies or other factors that mitigate or
exacerbate autistic burnout would be beneficial, though a validated definition will be needed.
The majority of experts were Caucasian, well-educated and had full or part-time employment.
Future research will need to validate the definition in a more diverse sample. Although there is
slight female preponderance to the emotional exhaustion component in non-autistic burnout
research (Purvanova & Muros, 2010), the greater number of female experts in our study is likely
due to the higher female participation rates in online autism research (Arnold et al., 2019).
Overall, the small sample and methodology do not allow any interpretation regards gender to
be made, with future research required in this area. For inclusiveness, we allowed experts who
only provided a partial response or no response in round 1 to participate in subsequent rounds,
and experts were not linked across rounds to aid anonymity. This prevented the researchers
developing an understanding of responses to later Delphi rounds based on individuals’
experiences described in the first round. It would have also prevented the use of convergence
or divergence metrics often employed in Delphi. Nevertheless, this is potentially a strength of
our approach in that the definition developed was approved by some experts who were not
involved in the initial round. Responses from our experts were highly heterogenous regarding
the duration of autistic burnout, and the preliminary definition reached will need further
validation particularly regarding duration criteria. Questions in the latter half of the round 1
survey probing elements of non-autistic burnout and depression may have influenced experts’
responses and the definition constructed.
Finally, we believe the positioning of autistic people as experts and co-leaders of the research
team together with clinician researchers was critical to understanding the clinical and
existential experience of autistic burnout. The primacy of autistic voice ensured our
understanding and interpretation of data were not skewed by neurotypical perspectives.
Autistic burnout appears to be a debilitating condition with onset linked to everyday stressors
faced by autistic people in an unaccommodating world. The condition appears distinct from
(non-autistic) burnout or depressive episodes. In common with (non-autistic) burnout, research
is needed to establish further whether this condition might be a non-typical presentation of
depression, chronic fatigue syndrome or another condition. Further research is needed to
validate proposed definitions emerging within the literature. Consensus on definitions should
be achieved prior to subsequent research such as the development of measurement tools,
estimates of prevalence and identification of risk and protective factors. Clinicians need to be
aware that treatments for depression may be contra-indicated. To ensure that the severity of
this condition and its link to suicidality is not understated, more work on understanding and
building awareness of autistic burnout is urgently needed.
Adamsson, A., & Bernhardsson, S. (2018). Symptoms that may be stress-related and lead to
exhaustion disorder: A retrospective medical chart review in Swedish primary care. BMC
Family Practice, 19(1), 172.
Arnold, S. R. C., Foley, K.-R., Hwang, Y. I., Richdale, A. L., Uljarević, M., Lawson, L., Cai, R. Y.,
Falkmer, T., Falkmer, M., Lennox, N. G., Urbanowicz, A., & Trollor, J. N. (2019). Cohort
profile: The Australian Longitudinal Study of Adults with Autism (ALSAA). BMJ Open,
9(12), e030798.
Bianchi, R., Schonfeld, I. S., & Laurent, E. (2015). Is it Time to Consider the “Burnout Syndrome”
A Distinct Illness? Frontiers in Public Health, 3.
Bianchi, R., Schonfeld, I. S., & Verkuilen, J. (2020). A five-sample confirmatory factor analytic
study of burnout-depression overlap. Journal of Clinical Psychology, 76(4), 801821.
Boren, R. (2017, January 26). Autistic Burnout: The Cost of Masking and Passing. Ryan Boren.
Brooks, J., McCluskey, S., Turley, E., & King, N. (2015). The utility of template analysis in
qualitative psychology research. Qualitative Research in Psychology, 12(2), 202222.
Cage, E., & Troxell-Whitman, Z. (2019). Understanding the Reasons, Contexts and Costs of
Camouflaging for Autistic Adults. Journal of Autism and Developmental Disorders, 49(5),
Frost, K. M., Bailey, K. M., & Ingersoll, B. R. (2019). “I Just Want Them to See Me As…Me”:
Identity, Community, and Disclosure Practices Among College Students on the Autism
Spectrum. Autism in Adulthood, 1(4), 268275.
Geertz, C. (2017). The Interpretation of Cultures. Perseus.
Grossi, G., Perski, A., Osika, W., & Savic, I. (2015). Stress-related exhaustion disorder clinical
manifestation of burnout? A review of assessment methods, sleep impairments,
cognitive disturbances, and neuro-biological and physiological changes in clinical
burnout. Scandinavian Journal of Psychology, 56(6), 626636.
Heasman, B., & Gillespie, A. (2018). Perspective-taking is two-sided: Misunderstandings
between people with Asperger’s syndrome and their family members. Autism, 22(6),
Heinemann, L. V., & Heinemann, T. (2017). Burnout Research: Emergence and Scientific
Investigation of a Contested Diagnosis. SAGE Open, 7(1), 2158244017697154.
Hoekstra, R. A., Vinkhuyzen, A. A. E., Wheelwright, S., Bartels, M., Boomsma, D. I., Baron-Cohen,
S., Posthuma, D., & van der Sluis, S. (2011). The Construction and Validation of an
Abridged Version of the Autism-Spectrum Quotient (AQ-Short). Journal of Autism and
Developmental Disorders, 41(5), 589596.
Howard, K. J. (2018). Emergence of a new method: The Grounded Delphi method. Library and
Information Research, 42(126), 531.
Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M.-C., & Mandy, W. (2017).
“Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum
Conditions. Journal of Autism and Developmental Disorders, 47(8), 25192534.
Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A
systematic review and meta-analysis. European Psychiatry: The Journal of the
Association of European Psychiatrists, 55, 8089.
Korczak, D., Huber, B., & Kister, C. (2010). Differential diagnostic of the burnout syndrome. GMS
Health Technology Assessment, 6.
Kristensen, T. S., Borritz, M., Villadsen, E., & Christensen, K. B. (2005). The Copenhagen Burnout
Inventory: A new tool for the assessment of burnout. Work & Stress, 19(3), 192207.
Kroenke, K., Spitzer, R. L., & Williams, J. B. (2001). The PHQ-9: Validity of a brief depression
severity measure. Journal of General Internal Medicine, 16(9), 606613.
Leiter, M. P., & Maslach, C. (2017). Burnout and engagement: Contributions to a new vision. SI:
Burnout and Work Engagement: Dual Unity?, 5, 5557.
Livingston, L. A., Shah, P., & Happé, F. (2019). Compensatory strategies below the behavioural
surface in autism: A qualitative study. The Lancet Psychiatry, 6(9), 766777.
Mandy, W. (2019). Social camouflaging in autism: Is it time to lose the mask? Autism, 23(8),
Maslach, C., Jackson, S. E., Leiter, M. P., Schaufeli, W. B., & Schwab, R. L. (1986). Maslach
burnout inventory (Vol. 21). Consulting psychologists press Palo Alto, CA.
Maslach, C., & Leiter, M. P. (2016). Understanding the burnout experience: Recent research and
its implications for psychiatry. World Psychiatry, 15(2), 103111.
Milton, D. (2012). On the ontological status of autism: The ‘double empathy problem.’ Disability
& Society, 27(6), 883887.
Milton, D., Heasman, B., & Sheppard, E. (2018). Double Empathy. In F. Volkmar (Ed.),
Encyclopedia of Autism Spectrum Disorders. Springer.
Päivärinta, T., Pekkola, S., & Moe, C. E. (2011). Grounding Theory from Delphi Studies.
International Conference on Information Systems ICIS 2011 Proceedings, Shanghai,
China, 4.-7.12.2011, 114.
Purvanova, R. K., & Muros, J. P. (2010). Gender differences in burnout: A meta-analysis. Journal
of Vocational Behavior, 77(2), 168185.
Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K.,
Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having All of Your Internal Resources
Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic
Burnout. Autism in Adulthood.
Rose, K. (2018, May 21). An autistic burnoutThe autistic advocate.
Salmela-Aro, K., Kiuru, N., Leskinen, E., & Nurmi, J.-E. (2009). School Burnout Inventory (SBI):
Reliability and validity. European Journal of Psychological Assessment, 25(1), 4857.
Schaufeli, W. B., Bakker, A. B., Hoogduin, K., Schaap, C., & Kladler, A. (2001). On the clinical
validity of the Maslach Burnout Inventory and the Burnout Measure. Psychology &
Health, 16(5), 565582.
Sharp, L.-A., Woodcock, C., Holland, M., Duda, J., & Cumming, J. (2010). Validation of the
Athlete Burnout Questionnaire with youth athletes. Journal of Sport & Exercise
Tavella, G., Hadzi-Pavlovic, D., & Parker, G. (2020). Burnout: Re-examining its key constructs.
Psychiatry Research, 287, 112917.
Verkuilen, J., Bianchi, R., Schonfeld, I. S., & Laurent, E. (2020). BurnoutDepression Overlap:
Exploratory Structural Equation Modeling Bifactor Analysis and Network Analysis.
Assessment, 1073191120911095.
World Health Organization. (2019, May 28). Burn-out an “occupational phenomenon”:
International Classification of Diseases.
Round 1 Survey Open
ended items
Grounded-theory analysis,
draft definition developed
and sent to experts
Round 2 Survey
Quantitative items with
further comment options
Quantitative and template
analysis, definition refined
and sent to experts
Round 3 Survey
Quantitative items with
further comment options
Quantitative and template
analysis, definition finalised
(Context) Impact Recovery
Ancillary Temporal
from depression
... Cela corrobore les nombreux témoignages d'adultes autistes, qui se sont multipliés ces dernières années. C'est notamment le cas sur les forums et les réseaux sociaux -particulièrement Twitter -avec des mots-clés tels que #AutisticBurnout, #AutBurnout ou #ActuallyAutistic (Higgins, Arnold, Weise, Pellicano, et Trollor, 2021 ;Mantzalas, Richdale, Adikari, Lowe, et Dissanayake 2022 ;Raymaker et al., 2020). Les récentes études qui ont analysé ces témoignages mettent en évidence que le camouflage social, c'est-à-dire le fait de minimiser ses traits autistiques et de tenter de se "fondre dans le moule" est un facteur de risque majeur pour la survenue d'un épuisement progressif et sévère (Egner, 2022 ;Hull et al., 2017 ;Mantzalas et al., 2022). ...
... Les récentes études qui ont analysé ces témoignages mettent en évidence que le camouflage social, c'est-à-dire le fait de minimiser ses traits autistiques et de tenter de se "fondre dans le moule" est un facteur de risque majeur pour la survenue d'un épuisement progressif et sévère (Egner, 2022 ;Hull et al., 2017 ;Mantzalas et al., 2022). La suradaptation qui en résulte, et qui peut être quasi constante pour nombre de jeunes et d'adultes autistes évoluant en milieu ordinaire, génère un stress important et une difficulté souvent accrue pour gérer au mieux l'environnement, qu'il soit social (imprévus, communication, …) ou sensoriel (Egner, 2022 ;Higgins et al., 2021). Les résultats auprès des adolescents de l'étude mettent en évidence des difficultés similaires à celles rapportées dans les études précitées, en particulier sur l'énergie requise pour comprendre les interactions sociales et s'y ajuster au quotidien, sans que cela ne soit spontané. ...
... À titre illustratif, et bien qu'il ne s'agisse que des premiers travaux sur le sujet, une recherche sur Google Scholar permet de mettre en évidence que sept articles comportant l'expression "burnout autistique" dans leur titre ont été publiés dans des revues à comité de lecture, entre 2020 et 2022. Parmi eux, au moins trois proposent une définition opérationnelle différente -parfois complémentaire, parfois contradictoire -de ce concept (Higgins et al., 2021 ;Mantzalas et al., 2021 ;Raymaker et al., 2020). De plus, l'emploi dans le langage courant -notamment en ligne -des termes fatigue mentale ou burnout accroît l'ambiguïté terminologique, et de fait, la difficulté à circonscrire, caractériser et évaluer la fatigue cérébrale. ...
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(English abstract below) La fatigue cérébrale (FC) correspond à un épuisement anormalement rapide des ressources mentales, qui n'est pas soulagé par le repos et impacte les capacités de l'individu à fonctionner au quotidien. La symptomatologie autistique constitue une vulnérabilité pour la survenue de cette fatigue, particulièrement lors de la transition vers la vie adulte. Objectif. Développer un questionnaire pour évaluer et proposer une première caractérisation de la FC.Méthode. Quarante lycéens autistes ont complété un questionnaire, élaboré collaborativement lors d'une phase pilote avec 12 adultes autistes. Résultats. Plus de 90% des participants rapportent une fatigue qui les empêche d'accomplir certaines activités quotidiennes (faire ses devoirs (n= 25), suivre une journée de cours (n=16) ou s'exprimer (n=12)) ainsi que l'impression de perdre temporairement leurs capacités cognitives. Quatre-vingt-trois pour cent souffrent de symptômes physiques associés, dont l'épuisement physique (n=30), la maladresse (n=23) ou des migraines (n=22). Conclusion. Cette première étude (qui fait partie d'un projet de recherche participative plus large : met en évidence la présence d'une FC chez les étudiants autistes interrogés. Les répercussions sur la scolarité et la qualité de vie doivent être investiguées et prises en compte pour limiter les risques de burnout autistique. Context. Brain fatigue (BF) is a long-lasting psychobiological state of exhaustion, associated with a progressive decrease of cognitive resources, that isn’t cured by rest. The autistic symptomatology constitutes a vulnerability for brain fatigue, in particular during the transition into adulhood. Objective. Develop a questionnaire to evaluate and propose a first characterization of BF. Methods. Fourty high school students completed a questionnaire, collaboratively designed with 12 autistic adults in the pilot phase. Results. More than 90 % note an important fatigue, that severely impacts daily activities such as doing their homework (n=25), expressing themselves (n=12) and having the impression of losing their cognitive abilities. 83 % also report associated physical symptoms, including physical exhaustion (n=30), clumsiness (n=23) or migraines (n=22). Conclusion. This preliminary study (part of a broader particpatory project on BF in autism: https://www.autistic-brain- highlights the presence of BF among these autistic students. Consequences on their academic path and quality of life need to be examined closely and taken into consideration to limit the risks of autistic burnout. Keywords: brain fatigue, autism spectrum conditions, instrument development, particpatory approach, quality of life, transition into adulthood
... A new and important finding of the present study was that work can also provide a place of rest and calmness to buffer stress from family life, such as stress associated with social-emotional expectations from spouses or the hectic commotion of having young children. This finding is interesting, considering that autistic individuals have been found to often experience high stress levels in their lives [30,31] and that burnout episodes from life stress seem to be common in this group [32,33]. Although what has been described as 'autistic burnout' is conceptually different from how occupational burnout has been described in non-autistic working populations [33,34], in both concepts it is a debilitating condition characterized by exhaustion. ...
... This finding is interesting, considering that autistic individuals have been found to often experience high stress levels in their lives [30,31] and that burnout episodes from life stress seem to be common in this group [32,33]. Although what has been described as 'autistic burnout' is conceptually different from how occupational burnout has been described in non-autistic working populations [33,34], in both concepts it is a debilitating condition characterized by exhaustion. The Job Demands-Resources (JD-R) theory, a well-studied theory on occupational burnout, may therefore still be relevant for the prevention of autistic burnout [21]. ...
... In both groups, most participants agreed that employment can be very damaging to health and well-being. Many participants had experienced one or multiple burnout episodes during their lives, which is in line with findings of others [32,33], who argue that autistic burnout is a serious condition which is commonly described by autistic people but hardly recognized by the academic literature. Researchers have previously stated that autistic burnout is the result of an accumulation of chronic life stress, combined with a mismatch of expectations and abilities and no adequate supports [32]. ...
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Purpose The aim of the present study was to explore the meaning of work for the subjective well-being of autistic adults with and without paid (competitive) employment and to evaluate the differences and similarities between these groups. Methods Eight focus groups were conducted, including a total of 64 autistic adults. Four groups entailed participants with current paid employment (including part-time) and four groups entailed participants without paid employment. All discussions were audiotaped and transcribed verbatim to enable inductive thematic content analysis. Data were analyzed using ATLAS.ti 9. Results Generally, both groups viewed paid employment as very important for well-being, albeit for different reasons. Three themes were found: (1) Not having paid employment was associated with lacking societal recognition, and subsequent low self-esteem, which was a dominant theme in those without work; (2) Work can seriously damage (mental) health and well-being, found in both groups; and (3) Paid employment provides many benefits for well-being, with subthemes: ‘purpose,’ ‘social contacts,’ ‘growth and use of talents,’ ‘structure and calmness,’ and ‘income and freedom’, which was a dominant theme in those with paid employment. Conclusions Both groups found paid employment highly important for their well-being, albeit for different reasons. However, both also agreed that paid employment can be very harmful to (mental) health and well-being. Suitable, well-supported jobs are important for well-being, may help to buffer stress in other life areas, and may even prevent autistic burnout. More studies are needed on how healthy jobs can be created where autistic individuals get positive energy and experience high well-being. This will also help to reduce socio-economic inequality.
... Depression in autistic adults might be caused by or associated with (or both) autistic burnout, a state of psychological and physical exhaustion and stress experienced because of the demands of an unaccommodating world. 39 It is therefore plausible that recovery does not look the same for autistic adults. More research is required to understand what represents a clinically meaningful change in symptoms for them in a primary care service such as IAPT, 8 as well as the most appropriate measures to evaluate it. ...
... Yet, unfamiliar situations, especially those involving unexpected social interactions, often occur in the workplace and can trigger unanticipated emotional experiences [17]. Furthermore, to avoid being judged or stigmatized, AE undergo considerable effort to mask their struggles, which could lead to psychological discouragement that can be detrimental to their emotional health [18][19][20]. Moreover, they try to keep their diagnosis secret [21]. ...
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Emotional health problems in the workplace often hinder the integration and retention of autistic employees (AE), a challenge identified in many sectors. Recent literature highlights the consequences of these problems, such as burnout leading to reduced productivity and resignation. Previous research supports the effectiveness of virtual reality (VR) for training a variety of specific skills (e.g. riding a bus or plane travel), as well as more complex social skills, such as emotion recognition and functional communication. In addition, existing studies on using physiological self-monitoring in AE training offer a promising approach to promoting improved emotional health. The present paper reports on implementing a VR system that simulates workplace training and integration and enables real-time monitoring of three physiological signals, in five post-secondary autistic students. Using an Oculus Quest 2 and non-clinical grade sensors, the researchers delivered the VR intervention over three days to each participant. At the end of these interventions, the researchers measured the perceived satisfaction of these integrated systems, based on several technological criteria, on a 5-point scale. The integrated system received an overall rating of 4, suggesting its likelihood of acceptance and use. A preliminary analysis of a participant’s physiological responses to this VR intervention is also presented. This preliminary report suggests the efficacy of a VR workplace simulation and physiological self-monitoring in promoting emotional well-being and basic task training for post-secondary AE. The researchers’ observations and the proposal of a theoretical framework to enhance real-time emotional communication based on physiological markers for AE are also discussed.
... Also, autistic people have a substantially elevated risk of experiencing mental health problems, especially anxiety, depression (Hollocks et al., 2019;Hudson et al., 2019) and physical health issues (Rydzewska et al., 2021). These compounding issues, along with fatigue and burnout (Higgins et al., 2021;Raymaker et al., 2020), may also impact their capacity to obtain and sustain employment. Second, research has demonstrated consistently that, compared to non-autistic people, autistic adults typically fare badly both on conventional quality of life assessments (Ayres et al., 2018) and on standard 'life achievements', like living independently or having friends and intimate relationships (Howlin & Magiati, 2017) (see Pellicano, Hall, et al., 2022, for review). ...
Money matters in people's lives. It helps to meet people's basic needs (food, clothes, shelter) and live the lives they want to. When people talk about 'financial wellbeing', they mean how much you feel in control over day-to-day finances and how much freedom you have to make choices to enjoy life. We don't know what autistic people think about these things. That's why we did our study. We spoke to 21 autistic adults (24-69 years) about how they felt about their financial situation. We deliberately spoke to people who had told us previously they felt 'financially well' or 'financially unwell' so we could hear a range of opinions. Autistic people told us financial wellbeing meant having enough money to pay for their basics needs, to have a safety net for unexpected bills and not having to worry about money now or in the future. But many felt that good financial wellbeing was not possible for them. They often did not have a stable income to cover day-to-day expenses. This limited the choices they could make. Despite these challenges, autistic people told us they worked hard to budget and save money when they could - because feeling financial insecure was just too stressful, especially when they could not rely on family or friends for support. It made them feel mentally unwell. Our study shows there are many factors that influence autistic people's financial wellbeing. We need more research to help us understand how autistic people can be supported to achieve financial security.
... They nevertheless stressed how draining their use of masking had been at the cost of their physical and mental health. Although autistic burnout was not mentioned by all the women, much of their descriptions of their long-term mental, physical, and emotional exhaustion fit well with the core features of autistic burnout as described by Higgins et al. (2021); Mantzalas et al. (2021); and Mantzalas, Richdale, and Dissanayake (2022). ...
Autism research frequently seeks to evaluate interventions or inform their development. Unfortunately, researchers often assume that autism intervention should reduce autistic traits, effectively setting as a goal of treatment that autistic people attempt to “pass” as nonautistic. A growing body of evidence highlights serious potential harms from passing demands. We discuss why it is important for institutional review boards (IRBs) to scrutinize autism research for clinical passing demands, and we document the existence of such demands in outcome measures commonly employed in autism research. We propose an ethical framework for IRBs and others to make use of in evaluating the ethical appropriateness of particular treatment goals in autism intervention or intervention‐adjacent research, emphasizing that treatment goals should be in pursuit of a beneficial nonpassing purpose and be the least burdensome means of accomplishing such a purpose. We also highlight potential promising practices for IRBs, investigators, and other stakeholders seeking to address these issues in autism research.
Mental health challenges impede the well-being of autistic people. This Review outlines contributing neurodevelopmental and physical health conditions, rates and developmental trajectories of mental health challenges experienced by autistic people, as well as unique clinical presentations. A framework is proposed to consider four contributing themes to aid personalized formulation: social-contextual determinants, adverse life experiences, autistic cognitive features, and shared genetic and early environmental predispositions. Current evidence-based and clinical-knowledge-informed intervention guidance and ongoing development of support are highlighted for specific mental health areas. Tailored mental health support for autistic people should be neurodivergence-informed, which is fundamentally humanistic and compatible with the prevailing bio-psycho-social frameworks. The personalized formulation should be holistic, considering physical health and transdiagnostic neurodevelopmental factors, intellectual and communication abilities, and contextual-experiential determinants and their interplay with autistic cognition and biology, alongside resilience. Supporting family well-being is integral. Mutual empathic understanding is fundamental to creating societies in which people across neurotypes are all empowered to thrive.
Autistic adults in the United Kingdom report that support for themselves and their peers is not suitable for their needs. There has been an increase in adults receiving an autism diagnosis, which many have reported as having a positive impact on their lives. However, the lack of support and understanding after diagnosis, combined with long wait times for an assessment to obtain a diagnosis and to access follow-on support, is having a negative impact on people's lives. This study took place to find out what support autistic people need and want after receiving their diagnosis. It was co-designed with a group of 10 autistic adults which means that the researchers and group members collaboratively designed the research. For the study, 43 autistic adults, diagnosed aged 18 or older, completed three questionnaires. A fourth questionnaire followed that was completed by 139 autistic people who received their diagnosis in adulthood. These questionnaires aimed to help people identify their own priorities when it came to the support they would have liked to receive after being given their autism diagnosis. Participants ranked access to support where they live, training of professionals, support to process the impact of a late diagnosis, use of their preferred mode of contact and a personalised support plan as their top priorities. This demonstrates that local support is highly valued by autistic adults, as are well-trained professionals who offer a range of contact options, support to process a late-in-life autism diagnosis and help to develop and implement support plans.
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Although intuitive eating (IE) has become an increasingly adopted intervention target, current conceptualisations of IE have yet to pivot away from (neuro)normative physiology and phenomenology. Autistic individuals commonly report disordered eating behaviours and/or poorer well-being but appear to benefit from adaptive interventions using an affirmative approach. This article uses autism as a case example to summarise challenges related to IE’s prevailing conceptualisation, before proposing how future research and current practice can be extended to the autistic population. Scholars are encouraged to evaluate the full 10-principal IE framework while utilising a participatory-led approach. We argue that research using a mixed methods design is urgently needed to comprehensively explore the (re)conceptualisation of IE in autistic people. While IE shows promise for producing positive outcomes in the autistic population, we discuss the potential challenges for research and practice due to its current emphasis on accurate interoception, emotional awareness and processing, and executive functioning. This suggests the need for research and practice to integrate autistic needs and experiences into future developments with an affirmative approach. Public significance: IE is an effective intervention for reducing disordered eating behaviours. Autistic individuals commonly present disordered eating behaviours and have unique nutritional needs which often require intervention. However, there is limited understanding of IE among the autistic population. Research-informed definitions involving autistic perspectives will support translating the IE framework to this underrepresented population.
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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.
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Burnout has been viewed as a work-induced condition combining exhaustion, cynicism, and professional inefficacy. Using correlational analyses, an exploratory structural equation modeling (ESEM) bifactor analysis, structural regression analyses, and a network analysis, we examined the claim that burnout should not be mistaken for a depressive syndrome. The study involved 1,258 educational staff members. Burnout was assessed with the Maslach Burnout Inventory-General Survey and depression with the PHQ-9 and the Hospital Anxiety and Depression Scale (HADS-D). Illegitimate work tasks and work-nonwork interferences were additionally measured. We notably found that: (a) on average, exhaustion, cynicism, and professional inefficacy correlated less strongly with each other than with depression; (b) exhaustion―burnout’s core―was more strongly associated with depression than with either cynicism or professional inefficacy; (c) the PHQ-9 did not correlate more strongly with the HADS-D than with exhaustion; (d) exhaustion and depression loaded primarily on a general Distress/Dysphoria factor in the ESEM bifactor analysis; (e) on average, burnout and depression were related to job stressors in a similar manner; (f) work-nonwork interferences were strongly linked to Distress/Dysphoria. Overall, burnout showed no syndromal unity and lacked discriminant validity. Clinicians should systematically assess depressive symptoms in individuals presenting with a complaint of “burnout.”
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Objective: It has been asserted that burnout―a condition ascribed to unresolvable job stress―should not be mistaken for a depressive syndrome. In this confirmatory factor analytic study, the validity of this assertion was examined. Methods: Five samples of employed individuals, recruited in Switzerland and France, were mobilized for this study (N = 3,113). Burnout symptoms were assessed with the Shirom-Melamed Burnout Measure, the Maslach Burnout Inventory (MBI)-General Survey, and the MBI for Educators. Depressive symptoms were measured with the PHQ-9. Results: In all five samples, the latent factors pertaining to burnout's components correlated on average more highly with the latent Depression factor than with each other, even with fatigue-related items removed from the PHQ-9. Second-order factor analyses indicated that the latent Depression factor and the latent factors pertaining to burnout's components were reflective of the same overarching factor. Conclusions: This study suggests that the burnout-depression distinction is artificial.
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Purpose There is a significant knowledge gap regarding the lives of adults on the autism spectrum. Some literature suggests significant health and mental health inequalities for autistic adults, yet there is a lack of comprehensive longitudinal studies exploring risk factors. Further, most research does not include the perspective of autistic adults in its conduct or design. Here, we describe the baseline characteristics and inclusive research approach of a nationwide longitudinal study. Participants The Autism Cooperative Research Centre for Living with Autism’s Australian Longitudinal Study of Adults with Autism (ALSAA) is a questionnaire-based longitudinal study of autistic adults (25+ years old) with follow-up at 2-year intervals. Autistic advisors were involved in each stage of research apart from data analysis. Three questionnaires were developed: self-report, informant report (ie, proxy report) and carers (ie, carer experiences and characteristics). Findings to date An inclusive research protocol was developed and agreed with autistic advisors. Baseline data were collected from 295 autistic adults (M=41.8 years, SD=12.0) including 42 informant responses, 146 comparison participants and 102 carers. The majority of autistic participants (90%) had been diagnosed in adulthood (M=35.3 years, SD=15.1). When compared with controls, autistic adults scored higher on self-report measures of current depression and anxiety. Participant comments informed ongoing data gathering. Participants commented on questionnaire length, difficulty with literal interpretation of forced response items and expressed gratitude for research in this area. Future plans A large comprehensive dataset relating to autistic adults and their carers has been gathered, creating a good platform for longitudinal follow-up repeat surveys and collaborative research. Several outputs are in development, with focus on health service barriers and usage, caregivers, impact of diagnosis in adulthood, further scale validations, longitudinal analyses of loneliness, suicidal ideation, mental illness risk factors and other areas. Baseline data confirm poorer mental health of autistic adults. The ALSAA demonstrates a working approach to inclusive research.
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Background: Little is known about the compensatory profile in autism; that is, people with autism spectrum disorder who show few symptoms in their behavioural presentation, despite continuing to report autism-related cognitive difficulties or differences. Even less is known about the specific compensatory strategies that these individuals use to disguise autism at the behavioural surface, both in the clinic and everyday life. It is also currently unclear whether individuals without a formal autism diagnosis, but experiencing autistic-like difficulties, use similar compensatory strategies, potentially enabling them to sit below the diagnostic threshold. This study aimed to investigate social compensatory strategies, and their effect on diagnosis and clinical outcome, in adults with and without autism. Methods: In this study, individuals aged 18 years or older who responded to a study advert that was distributed worldwide via social media and the UK National Autistic Society formed a convenience sample. Participants self-reported their use and experiences of compensatory strategies using an online platform. Novel analyses, including a qualitative thematic approach, were used to interpret their responses and gain insight into compensatory strategies in autism. Findings: Between Oct 19, 2017, and Jan 2, 2018, 136 adults (58 had a clinical diagnosis of autism, 19 self-identified but were not formally diagnosed as autistic, and 59 were not diagnosed or self-identified, but nevertheless reported social difficulties) completed the online study questions. The findings suggested that there are multiple compensatory strategies with distinct characteristics, individual and environmental factors that modulate compensatory strategy use and success, positive (social relationships, independence, employment) and negative (poor mental health, late diagnosis) outcomes associated with compensatory strategy use, and that individuals without a diagnosis use compensatory strategies that are qualitatively similar to individuals with a diagnosis. Interpretation: Increased awareness and measurement of compensatory strategy use in autism should guide future diagnostic guidelines, towards improved diagnostic accuracy and support for people with autism spectrum disorder whose cognitive difficulties are not immediately evident in observable behaviour. Funding: UK Medical Research Council and UK National Institute for Health Research.
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Camouflaging entails ‘masking’ in or ‘passing’ social situations. Research suggests camouflaging behaviours are common in autistic people, and may negatively impact mental health. To enhance understanding of camouflaging, this study examined reasons, contexts and costs of camouflaging. 262 autistic people completed measures of camouflaging behaviours, camouflaging contexts (e.g. work vs. family), camouflaging reasons (e.g. to make friends) and mental health symptoms. Findings indicated a gender difference in reasons for camouflaging, with autistic women more likely to endorse “conventional” reasons (e.g. getting by in formal settings such as work). Both camouflaging highly across contexts and ‘switching’ between camouflaging in some contexts but not in others, related to poorer mental health. These findings have implications for understanding camouflaging in autistic adults.
There is widespread debate as to how to accurately define and measure burnout. The present study sought to address these issues by inviting participants who self-identified as experiencing burnout to complete a questionnaire covering a large item set of putative features. Bifactor modelling identified a ‘general’ factor with items capturing exhaustion as well as psychological and cognitive dysfunction. Three additional ‘specific’ factors were also generated that delineated work-focused, inability to feel and compromised work functioning constructs. Similar factors were found when those still working and those no longer working were compared. Results indicate a new heuristic diathesis-stress model of burnout.
Background: The purpose of this project was to understand how college students on the autism spectrum integrate their diagnosis into their identity, whether they connect with a broader "autism community," and when and why they disclose their diagnosis to other people. Methods: Twenty participants completed semistructured interviews by phone, text message, or email. An inductive approach was used to generate codes, and results were synthesized via thematic analysis, theme counts, comparing and contrasting cases, and examining outliers. Results: Across participants and interview topics, the students in our study expressed a desire to be understood and known genuinely by other people. Interviews revealed that autistic identity is complex and variable across individuals. Most of the students in our study did not feel part of a broader autism community, although several reported that some of their close friends were on the spectrum as well. Our participants rarely disclosed their autism to other people, and this decision was often informed by whether the disclosure would support or inhibit understanding. Conclusions: Results suggest there is a need for neurotypical people to be more accepting, affirming, and empathetic in their interactions with neurodivergent people. In addition, our results suggest that autistic college students may not participate in services that explicitly connect groups of students on the spectrum or require disclosure of their diagnosis. College students with autism should be involved in the development of college supports and services that are consistent with their values and disclosure practices. Lay summary: What was the purpose of this study?: The purpose of this study was to understand how autistic college students integrate autism into their identity, whether they feel a part of a larger "autism community" and when and why they tell other people that they have autism.What did the researchers do?: The researchers in this study interviewed 20 autistic college students. Interviews included several topics: (1) how autism fits into students' sense of identity, (2) whether they feel connected to an autism community, and (3) whether, when, and why the students tell others they are on the autism spectrum. Researchers read the interview transcripts and identified common themes based on what students said.What were the results of the study?: Overall, the college students in this study wanted to be genuinely understood by others. Some students identified strongly as autistic, whereas others felt it was not part of who they are. Most students in this study did not feel a part of a larger autism community, but several reported having friends on the spectrum. Most participants did not tell others about their autism diagnosis; however, they felt comfortable sharing this information with close friends, romantic partners, and school personnel. In general, decisions about disclosing (or not disclosing) were related to being understood by other people.What do these findings add to what was already known?: This study focused on the experience of autistic college students from their own perspective and discussed relationships between disclosure practices, autistic identity, and connection to autism communities in a way other studies had not done before. This study's findings suggest a need for neurotypical people to be more accepting, affirming, and empathetic toward people with autism. In addition, because college students on the autism spectrum may not use services that require disclosure of their diagnosis, colleges should allow autistic students to be involved in the development of services that meet this population's unique needs.What are potential weaknesses in the study?: This study only recruited participants from disability resource centers of colleges in the midwestern United States, so results may not apply to other people. Students who had not registered with disability services could not be contacted for participation in this study. Furthermore, most participants in this study were white men from families with a high level of education, so we have a limited ability to understand how being autistic might intersect with other facets of identity for members of other marginalized groups.How will these findings help autistic adults?: These findings help the autism community by informing the neurotypical population about the need to be more accepting of the unique perspectives of people on the autism spectrum. Although autism awareness in the United States has increased, our results suggest that awareness alone is not enough. Instead, our goal should be to promote acceptance, inclusion, and empowerment of autistic people.
This paper reports on the Grounded Delphi method (GDM), a relatively new methodological extension of the Delphi method, achieved by incorporating aspects of Grounded Theory, as used in a recent doctoral dissertation. The research explored the skills, knowledge, qualities and professional education needs of information professionals in galleries, libraries, archives and museums (GLAM) in Australia, with a view to determining relevant educational requirements to enable information professionals to operate across these blurred cultural heritage boundaries. Implications of using GDM for LIS research, and for research methods in general, is that it improves the rigour of theory building in Delphi studies, while the consensus, or force ranking, aspect of Delphi assists in improving the relevant level of importance of categories derived from Grounded Theory.