AUTISTIC BURNOUT: “MY PHYSICAL

BODY AND MIND STARTED

SHUTTING DOWN”

Dora M Raymaker, PhD

Portland State University / Academic Autism Spectrum Partnership in Research and Education
Introduction: Dora Raymaker
■ Research Assistant Professor, PSU Regional Research
Institute for Human Services, School of Social Work
■ Transition-age and adult populations (autism, mental
health, developmental disability)
■ Social services intervention research (systems scientist,
not a clinician—though clinicians are on our team!)
■ Community based participatory research approach
■ Co-director Academic Autism Spectrum Partnership in
Research and Education (aaspire.org)
■ Autistic and disability rights (self-)advocate
■ Science for social change!
 Academic Autism Spectrum
Partnership in Research and Education
■ Research group founded in 2006 by Christina Nicolaidis, MD, MPH and me
■ Christina used “Autism Journal Club” to lure me into a social interaction
■ Lots of complaints about autism research:
– Not relevant / useful to autistic people
– Issues with research design
– Stigmatizing questions, language, dissemination
– Potential harm to autistic people
■ …just like other marginalized populations
■ Stop complaining and do something!
Community Based Participatory
Research
Emancipatory approach to research developed in public health

Community members are co-researchers in every phase of the research

Lived experience and community knowledge is respected on the same level as

academic expertise

AASPIRE community partners involved at all stages of this project

 Academic Autism Spectrum Partnership in
Research and Education

■ 12 years later…
■ Team made up of academic
researchers, autistic individuals,
family members, healthcare
providers, and disability services
professionals. aaspire.org

■ In partnership with PSU, OHSU,

Autistic Self Advocacy Network,
Autism Society of Oregon, Syracuse
University, Indiana University, and
members of the Autistic community
at large.
Currently Active AASPIRE Areas of Study
Autistic burnout (this talk)
•Exploratory study to understand and define experience of autistic burnout
•Begin creating a measure of autistic burnout

Autism and professional employment

•Exploratory study to understand facilitators of success
•Intervention to facilitate employer autism-friendly culture change
•Intervention development to improve professional employment outcomes

Healthcare
•Healthcare disparities study / understanding hc experiences
•AASPIRE Healthcare Toolkit and Autism Healthcare Accommodations Tool
•Adaptation of Toolkit for emergency / hospital autismandhealth.org
Agenda

1 “Autistic burnout” and why it needs research

2 AASPIRE autistic burnout study

3 What we’ve learned so far about autistic burnout

4 Implications/recommendations for people on the spectrum, families, clinicians

5 Wrap-up and questions

1. “AUTISTIC BURNOUT”
AND WHY IT NEEDS
RESEARCH
Background
What Is “Autistic Burnout”?
■ Term used in the autistic community, typically for a feeling similar to professional
burnout?—only applied to all areas of life
■ Sometimes called “autistic regression?”
■ Autistic adults report times when they can no longer cope, lose skills / function,
start acting or feeling “more autistic,” lose jobs / school / relationships / mental
and physical health; sometimes leads to permanent disability or suicidal behavior
■ Something is happening but many questions, like
– Is there an unambiguous definition of “autistic burnout?”
– Is it different from professional or other well-explored kinds of burnout?
– Is it different from depression?
– Why does it happen and how can it be relieved or prevented?
Autistic Experience vs. Current State of the
Science
■ Much discussion on blogs, social
media, community spaces about
autistic burnout
– Source of distress
– Factor in poor life outcomes
– Factor in suicidal behavior
– Connected to stress, masking
(having to “pass” as non-
autistic)
■ High priority for autistic adults
Autistic Experience vs. Current State of the
Science
■ Published research for autism and burnout is on family, teacher, caregiver burnout
– Little is empirically known about burnout in autistic people themselves
■ Burnout, in part driven by masking, may mediate suicidal behavior in physicians and
medical students whose suicide rates are 1.5-2x higher than general population
– Could similar mechanisms contribute to the 35% rate of suicide plans or
attempts by autistic adults?
■ What’s the answer to the question of “what helps?”
– We have to start somewhere
2. AASPIRE AUTISTIC
BURNOUT STUDY

Aims and Methods

Study Aims

1. To characterize autistic burnout, and qualitatively understand people’s experience

of it and strategies for preventing or recovering from it
2. To develop and conduct initial psychometric testing (content, construct, and
congruent validity, internal reliability, and acceptability) of a measure of autistic
burnout based on what we learn in aim 1
 Study Design

9 employment interviews Study findings

that spontaneously and
mentioned autistic burnout recommendations

10 new interviews Create and pilot test

specifically about autistic Qualitative
analysis (N=50) autistic
burnout burnout measure

19 public media posts

about burnout Future
Research
Qualitative Data Sources

■ 9 employment interviews that discussed autistic burnout spontaneously (from

interviews with 45 autistic adults with professional training) national sample;
community-based recruitment
■ 10 new interviews focused on autistic burnout; national sample; community-based
recruitment; purposively sampled to fit demographics not covered in the
employment interviews;
– Tell me the story of your experiences with autistic burnout
– Definitions / characteristics of autistic burnout
– Strategies / advice / resources to prevent or relieve autistic burnout
■ 19 key public online media sources (blogs, videos, twitter, Instagram) compiled by
the AASPIRE Autistic community partners and recommended by study participants;
threads followed from the initial list
Qualitative Analysis

■ Thematic analysis – look for recurrent, strong, and pervasive ideas across interviews
■ Semantic and latent levels – both taking words at face-value, and inferring
underlying meanings from narrative and broader context
■ Critical paradigm – “reality” as represented by qualitative data is a product of an
interaction between participant and researcher, positioned within a broader context
■ Verification
– Multiple coders, double-coding, meetings to discuss and converge codes
– Member checking with our CBPR team
– Triangulation with other data sources
 Current Status

9 employment interviews Study findings

that spontaneously and
mentioned autistic burnout recommendations

10 new interviews Create and pilot test

specifically about autistic Qualitative
analysis (N=50) autistic
burnout burnout measure

19 public media posts

about burnout Future
Research
 3. WHAT WE’VE
LEARNED SO FAR

Results
 Burnout (N=10) Employment (N=9)
Degree Degree
Demographics HS/GED
Assoc.
33% (3)
11% (1)
HS/GED
Assoc.
and Data Bach.
Masters
44% (4)
11% (1)
Bach.
Masters 89% (8)
Characteristics Doctorate
Gender Identity
Doctorate
Gender Identity
11% (1)

Female 36% (4) Female 67% (6)

Male 64% (7) Male 11% (1)
Other Other 44% (4)
Race Race
Asian Asian 11% (1)
Black/Afr. Amer. Black/Afr. Amer. 11% (1)
White 100% (10) White 67% (6)
Multi Multi 11% (1)
AAC Use 20% (2) AAC Use 44% (4)
Disability Service Use 50% (5) Disability Service Use 33% (3)
Age Age
Mean 41.2 Mean 33
Primary public social media / blog Std.dev. 12.2 Std.dev. 31.1
sources N=19 Range 24-65 Range 21-65
 “So this combination [of stress, masking, social isolation, loss of an important
support person], along with the overwhelming confusion of what was 'wrong' with
me, why I couldn't really connect with anyone, why people singled me out or played
tricks or used me, of what the hell was wrong with me and why i [sic] just kept hitting
this wall over and over again, was what led me to crash and burn out - my physical
body and mind started shutting down. I could feel each system in my body closing off
as gravity got heavier than it had ever been. I didn't know what to do - did not
understand what was happening to me - I had no way to communicate this. It was
like a switch had gone off, my verbal ability to convey what was going on in my mind
and body was gone. I did not want to die, I've never wanted to die. I needed to step
out. I needed to remove myself from the environment and take myself elsewhere; I
needed to escape. But the only way I knew how to do that was to die. So I tried.”
Kieran. An autistic burnout. The Autistic Advocate: Autistic
People Have a Voice. Vol 2018:
http://www.theautisticadvocate.com/2018/05/an-autistic-
burnout.html?m=1; 2018.
Components or Features

■ Loss of skills: cognition, executive function, memory, speech/communication, ability

to cope, ability to do things once could do
■ Increased sensitivity: to sensory stimulus, to sensory overload, to change, to social
stimulus
■ Increased autistic behavior (e.g., stimming, speech difficulties)
■ More frequent meltdowns / shutdowns
■ Chronic exhaustion
Causes

■ External expectations chronically outweigh abilities to meet them

■ Chronic masking, struggle to “pass” as non-autistic and/or repress autistic behavior
■ Change, stress from change, stress
■ Inability to recover quickly enough from the strain of pushing to meet external
expectations / mask / cope
Possible Dynamics?

■ Leads to a “growth and

collapse” type behavior
■ System grows faster than
available resources can keep
up
Impacts on Life

■ Loss of job, social standing, sense of belonging

■ Lack of understanding from others
■ Reduced self-esteem and self-efficacy
■ Increased depression, anxiety
■ Self-injury and suicidality
Onset and Course

■ Timing throughout life

– Puberty, post-puberty
– Points of increased independence (e.g., starting high school or college)
– (then a period of stability?)
– Points of increased stress
– Aging
■ Collapse and retreat to recover
■ Often (especially later in life) incomplete recovery
“Types” of Autistic Burnout?

■ Low-level and constant

■ Intense / acute
■ Social burnout (only coping with / tolerance for social interactions is exhausted)
Autistic Burnout vs. Professional
Burnout
■ Professional burnout is characterized by
– Exhaustion
– Depersonalization
– Reduced self-efficacy
■ Much evidence in data for exhaustion and reduced self-efficacy
■ Little evidence for depersonalization
Autistic Burnout vs. Depression

■ Some overlap; for example, feelings of worthlessness, exhaustion

■ Likely insufficient overlap to be the same
■ Autistic burnout did NOT include, for example, slowed or speeded movement,
hypersomnia/insomnia, etc.
■ Notably did not include anhedonia (not caring/feeling); if anything there was a
pervasive frustration because people continued to care and feel but felt incapable of
taking action on their feelings
■ Some participants who had a diagnosis of depression took care to differentiate it
from their burnout
 ■ “Autistic burnout is a state of physical and
mental fatigue, heightened stress, and
diminished capacity to manage life skills,
sensory input, and/or social interactions,
which comes from years of being severely
Working overtaxed by the strain of trying to live up to
demands that are out of sync with our

Toward a ■
needs.”
“It's like promoting a [neuro-typical] person

Definition beyond their own skill level...until they

flop...only times 100...and sometimes far
more.”
■ “Having all of your internal resources
exhausted beyond measure and being left
with no clean up crew.”
 4. WHAT DOES IT MEAN
AND WHAT CAN BE DONE
ABOUT IT
Implications and Recommendations
“WHAT
HELPS?
HELP
ME.”
Karla Fischer https://www.facebook.com/Karlas-ASD-Page-155369821204141/
Rapidly Evolving Topic
in the Community
■ For example, see the list of strategies for avoiding or
coping with autistic burnout at:
https://queenofthedrowned.com/2019/05/26/resource
s-for-burnout-recovery-featuring-the-autistic-social-
network/
■ And What is Autistic Burnout? A guide from Autism
Women’s Network (fine print at bottom: Sources: “Autistic
Burnout – Are You Going Through Burnout?” Anomously
Autistic. Endow, Judy. “Autistic Burnout and Aging.”
Ollibean. “Help! I seem to be getting more autistic!”
American Asperger’s Association. Kim, Cynthia. “Autistic
Regressiona and Fluid Adaptation.” Musings of an Aspie.
Schaber, Amythest. “Ask an Autistic #3 – What is Autistic
Burnout?” Thanks to Lindsey Allen, AWN Nebraska for
compiling this guide. © Autism Women’s Network 2017)
Strategies and Recommendations for
Autistic People
■ Time off from school, job, life
■ Reduced self-expectations
■ Stimming, time with special interests
■ Sensory and/or social withdrawal
■ In general, time spent without the “mask”
■ Passage of time; time to recover
Strategies and Recommendations for
Families and Friends
■ Reduced expectations
■ Acceptance of the person even when they don’t “pass” for non-autistic / acceptance
of autistic behavior
■ Emotional support, empathic connections
■ Direct support for instrumental activities of daily living
■ Accommodations at work / school / community
Broader Systems-Level Considerations

■ Discrimination and stigma around autistic behavior and disability encourage people
to mask – anti-discrimination / anti-stigma work may have long-term, indirect
impact?
■ Therapy with normalization goals may need to be reconsidered?
■ System-level changes that normalize disability may be beneficial in reducing overall
risk of autistic burnout?
■ Professional, clinical, family, and self-advocate communities all could benefit from
further understanding and discussion around autistic burnout
Considerations Around Transition Age

■ Many adults report their first autistic burnout around transition age
■ May be a particularly vulnerable time due to increase in expectations, number and
scope of life-changes, and general stress of that developmental time
■ Young people may not understand what is happening to them if it is their first
experience of autistic burnout
 “I was intellectually gifted, but emotionally and
socially way behind my age. I burned out
completely at age 14 from stress, socializing
issues, and the start of an erratic puberty…Only
now do I see it as burnout...”
“It actually started in middle school, my sensory
issues got a lot worse, then I started socially

Transition Age withdrawing...like hanging out in my room and

going into shutdown and...then my parents were
really concerned because...they thought I was
Narratives depressed, and for that [instance of burnout]
afterwards...I never got to the point where I was
before, like, I couldn't deal with sensory issues
the same way I went from having no diagnosis of
autism to have a diagnosis of autism so it was a
significant point in my life....I think that [instance
of burnout] was caused by the social differences
and interaction of a teenager versus pre-
adolescent years.”
A Caution About “Reduced Expectations”

■ NOT MEANING reducing expectations about a person’s ability to achieve their goals
in life!!! They should have the same opportunities as anyone!
■ ONLY talking about expectations of how close to a non-autistic person’s path theirs
should look
■ In other words:
– DO EXPECT US to be able to achieve our dreams!
– …Just don’t expect us to always achieve them in the same way a non-autistic
person would 
Key Points from the AASPIRE Research
Team for Family and Professionals
■ The more people need to mask the more likely they are to experience burnout
■ Educate yourself about disability rights, and cultivate positive autistic or disability
identity in young people
■ Teach young people to pace themselves and set flexible boundaries for themselves
■ Focus on autistic strengths and preservations to reduce the risk of burnout; for
example, choose activities or employment in alignment with special interests
■ Be sensitive to the possibility that decreases in function (when someone can do
something at one time but is unable to do the same thing at another time) may be a
sign of autistic burnout
Limitations

■ Small, qualitative study, convenience sample, burnout-specific interviews missing

important demographics
■ Designed to get an in-depth understanding from experts, not to generalize to a
population
■ Preliminary, exploratory work
■ Analysis and interpretation presented here is still developing and has not been
finalized
Next Steps

■ More research is needed

– Measure development
– Increased understanding of underlying causes and associations
– Understanding of role in suicidality
– Programs to relieve or prevent
■ More conversation is needed
– Autistic people have been talking about this experience amongst ourselves for
a long time
– It’s time to broaden the discussion outside of the community so it can gain
more potential for action
5. WRAPUP AND
QUESTIONS
Thanks & Questions

■ Thank you to the AASPIRE team, and to all of our research participants
who shared their wisdom and experience with us
■ Autism in Adulthood journal
■ Contact me! [email protected] | http://doraraymaker.com
■ Happy to answer questions on: autistic burnout, community-engaged approaches to
research, AASPIRE’s employment or healthcare studies
■ This research supported by National Institute of Mental Health award number
1R21MH112038, and by Oregon Health & Science University / Portland State University
Collaboration Seed funding. It is the responsibility of the authors and does not necessarily
represent the views of NIMH, OHSU, or PSU.