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Autistic Burnout: Latest Research

By Professor Tony Attwood and Dr. Michelle Garnett

 

The recognition of the experience of autistic burnout has primarily come from autobiographies, Internet support groups and clinical experience. Few research teams have explored the concept of autistic burnout, but Australia has taken the lead.

 

Initial criteria for autistic burnout

We have provisional criteria for autistic burnout, according to Higgins et al (2021):

  1. Significant mental and physical exhaustion
  2. Interpersonal withdrawal

With one or more of the following:

  • Significant reduction in social, occupational, educational, academic, behavioural, or other important areas of functioning
  • Confusion, difficulties with executive function and/or dissociative states
  • Increased intensity of autistic traits and/or reduced capacity to camouflage/mask autistic characteristics

There can be associated features such as:

  • Low self-esteem and not knowing how to restore mental energy levels.
  • Confusion as to whether the signs are indicative of a clinical depression.
  • Loss of self-care skills and ability to regulate emotions.
  • Persistent difficulties with daily living skills.

As clinicians, we have also noted autistic inertia, that is, being ‘frozen’ and unable to initiate an action and a sense of having brain ‘fog’ and a need to ‘hibernate’ from a cold and bleak world. In a recent study of burnout, inertia, meltdown and shutdown in autistic children and adolescents by Phung et al. (2021), the sense of inertia was described as:

…when I come home from school after I’ve had, like, two tests and a ton of assignments. I just come home and then I just sit at my computer for a few minutes not knowing what to do.

The prevalence and recurrence rate of autistic burnout are unknown, but our clinical experience is that burnout can first occur in the High School years.

 

The experience of autistic burnout

Research is exploring the burnout experience. Raymaker et al. (2020) used thematic analysis of interviews and Internet sources that identified themes of chronic exhaustion, such as

Having all your internal resources exhausted beyond measure and being left with no clean-up crew.

There was also a recognition of a reduction in executive functioning, self-care skills, ability to regulate emotions and tolerance of sensory experiences and participants described a lack of empathy from non-autistic people.

A study by Mantzalas et al. (2022a) used thematic analysis to analyse the public posts about autistic burnout from two online platforms. The primary themes that were identified included experiencing a systematic and pervasive lack of autism awareness in multiple contexts, as illustrated in the quotation.

How do I survive autistic burnout if neither my doctor, nor University nor psychologist allow me to take the rest I need in order to function?

There were feelings of not being accepted by peers at school and colleagues at work, and employers deliberately altering their working conditions to make it harder to cope and forcing the autistic employee to resign. There can also be an effect on speech and sensory sensitivity.

I avoided speaking and retreated from socializing. I was spent. I couldn’t maintain the facade anymore.

Participants described being more sensitive than usual to environmental stimuli and less able to tune them out, increased instances of being overwhelmed by sensory experiences and increased meltdowns and shutdowns.

Very low sensory tolerance… many ‘routine’ noises have become quite painful, therefore very difficult and taxing to access public spaces, shopping/errands, parks and social gatherings.

Many participants in the research study described burnout as lasting months or years, and recovery was protracted or never fully achieved and recurrent burnout altered the trajectory of their lives. However, burnout could become a catalyst for recognition of being autistic and subsequent re-evaluation of their lives and improved self-awareness, self-care, confidence and finding the autistic community, as in the following quotation:

Like so much else about autism, I’ve learnt everything I know about autistic burnout from insightful descriptions and selfless honesty of autistic people.

A recent study by Arnold et al. (2023a) confirmed exhaustion and social withdrawal as the most strongly endorsed characteristics of autistic burnout but also explored the warning signs of autistic burnout. These included physical signs of onset such as:

I usually get lightheaded and have dizzy spells…as well as hot flashes.

I notice I have difficulty saying words, they are in my head but I can’t get them to my mouth.

However, for some participants, the onset was sudden, with no warning signs, with burnout just creeping up.

This may, in part, be due to difficulties with interoception, that is, perceiving internal body signals of stress and alexithymia, describing thoughts and feelings in conversational speech.

Alexithymia is a part of my diagnosis which makes it very difficult to know when burnout is coming on.

There were also chronic and acute episodes of autistic burnout.

If you define burnout as spending the weekend in bed, non-functional, that would be maybe 10 times per year.

Approximately half of the 141 respondents (52%) considered suicidal ideation as a consequence of autistic burnout and the authors describe how many of the participants were misdiagnosed as having depression, anxiety, bipolar disorder, borderline personality disorder and other conditions.

 

An assessment instrument for autistic burnout

A further study of autistic burnout by Arnold and colleagues (Arnold et al. 2023b) describes an assessment instrument’s design and initial evaluation. The Autistic Burnout Severity Items (ABSI) explored potentially unique characteristics of autistic burnout syndrome. The instrument measures exhaustion, cognitive disruption, such as memory problems and confusion, heightened autistic self-awareness and feelings of being overwhelmed and becoming socially withdrawn. This instrument will be of value in future research on autistic burnout and for clinicians and autistic individuals.

 

A conceptual model of autistic burnout

We now have the first conceptual model of autistic burnout described by Mantzalas, Richdale and Dissanayake (2022b). The model includes risk and protective factors that may contribute to or buffer against autistic burnout. The risk factors include autistic traits such as social and conversational difficulties, coping with change and sensory sensitivities. Another risk factor is masking and camouflaging autism and experiences of depression, anxiety and bullying and teasing. Protective factors include stress reduction activities such as repetitive motor actions, special interests that can be re-energizing, self-awareness including improved interoception and reduced alexithymia, recognition of the triggers for burnout, self-care, boundary setting and social support, including support from the autistic community.

 

Where to from here?

We are presenting a half-day Event, Autistic Burnout, on the morning of the 23rd of February 2024, which will also be recorded and can be viewed for 60 days after the Event. We will cover each topic discussed in this blog in greater depth and describe strategies for autistic individuals, parents and professionals to identify and recover from autistic burnout. The Event was designed for autistic adolescents and adults, parents and health and educational professionals. For further information, please go to:

 

References

Arnold et al (2023a) Autism 27 1906-1918.

Arnold et al (2023b) Autism 27 1933-1948

Higgins et al (2021) Autism 25 2356-2369

Mantzalas et al (2022a) Autism in Adulthood 4 52-66.

Mantzalas et al (2022b) Autism Research 15, 976-987.

Phung et al (2021) Frontiers in Psychology 12.

Raymaker et al (2020) Autism in Adulthood 2 132-143