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CFS/ME or Autistic Burnout?

If you are a late-realised, high masking Autistic person experiencing extreme fatigue you may be wondering if you have Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyelitis (ME) or Autistic Burnout. 

You may have been diagnosed with CFS/ME and be worried that the diagnosis is incorrect, or you may have resisted such a diagnosis feeling that it doesn’t adequately capture your experience which you feel is better explained by Autistic Burnout. 

In this article I will outline the similarities and differences between Autistic Burnout and CFS/ME and discuss the relationship between the two, giving you the information you need to help decide which diagnosis might better explain your symptoms, give you access to appropriate support and be more helpful in your recovery process.

Symptoms and Diagnosis

Myalgic encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is a long term condition with four main symptoms:

  1. Extreme fatigue
  2. Sleep problems (too much or too little, not feeling refreshed after sleeping)
  3. Problems with thinking or concentrating
  4. Symptoms get worse after physical or mental exertion (sometimes called Post-Exertional Malaise or PEM)

Some people also have pain in different parts of their body or ‘flu like symptoms such as high temperature, aches and pains.

Autistic Burnout  is a common set of symptoms described by people within the Autistic Community.  These include:

  1. Physical symptoms including extreme fatigue
  2. Cognitive symptoms including difficulty thinking, processing information or concentrating
  3. Executive functioning symptoms including difficulties with planning, organising and sequencing tasks
  4. Social symptoms including finding social contact more difficult or draining than usual
  5. Emotional symptoms Increased difficulty managing emotions, feeling overwhelmed or ‘bad’ an increase in meltdowns and/or shutdowns
  6. Sensory symptoms Increased intensity in, or awareness of, sensory aversions.  Increased need to stim or decreased effectiveness of stimulation seeking behaviour to regulate sensory experiences.

ME/CFS is a diagnosis made when all other potential causes of these symptoms have been ruled out and the symptoms have not resolved after 3  months. 

Autistic Burnout is not an official diagnosis. People self-identify as someone in Autistic Burnout when they are Autistic, or suspect they are Autistic and are experiencing the symptoms of Autistic Burnout listed above. 

Given the significant overlap in symptoms, someone who repeatedly presents to their GP with symptoms of Autistic Burnout may well be diagnosed with CFS/ME. 

Causes

The cause of ME/CFS is not clear,  some people develop symptoms after a virus or infection and some develop symptoms after a period of prolonged stress.

Although the research on Autistic Burnout is in its infancy it seems to be consistently showing that Autistic Burnout is caused by too  much stress, for too long, with insufficient support and opportunity for recovery.  You can read more about the causes of Autistic Burnout here. 

CFS/ME, being a diagnosis that is reached though excluding any other possible causes is likely a set of symptoms that can arise from more than one cause.  Therefore it might be wise to view CFS as an umbrella term for numerous conditions, one of which could be Autistic Burnout. 

Prevalence in the Autistic population

There is no data on exactly how many Autistic people have been diagnosed with CFS/ME however, Central Sensitivity Syndromes (CSS) are a group of physical health conditions where there is thought to be central sensitisation or augmented sensory signalling of the central nervous system as a core component.  CSS includes ME/CFS, Fibromyalgia Syndrome (FMS), Migraine, Irritable Bowel Syndrome (IBS) Restress legs Syndrome (RLS) and Temporomandibualar Joint Disorder (TMJD).  

A recent Dutch study (Grant et al., 2022) of 973 Autistic Adults found that 21% of paritipants had been given a previous diagnosis of a CSS and 60% scored at or above the cut off for a current CSS.

This data suggests that Autistic people are at increased risk of experiencing symptoms of and being diagnosed with CFS/ME.  

There is no data on exactly how many Autistic people experience Autistic Burnout but estimates are as high as 80% (Dawes, 2023). 

It is clear that Autistic people are at increased risk of both CSS, including CFS/ME and Autistic Burnout. 

Treatment 

Nice guidelines for treatment of CFS/ME focus on symptom management as no cure has been identified.  About 5% of people diagnosed with CFS/ME make a full recovery while 40% experience a significant reduction in symptoms and improvement in quality of life (Carins &Hotopf., 2005).

In the UK there are specialist CFS/ME services available to support people, they offer practical lifestyle advice and use pacing/energy management strategies to help manage symptoms.  They may also offer Cognitive Behavioural Therapy (CBT) to help manage the psychological impact of the symptoms. 

There are no nice guidelines on the management of Autistic Burnout and in the absence of high quality research data any treatment options are based on retrospecitve self-report data from the autistic community, research evidence on factors affecting wellbeing in Autistic people more generally and techniques for managing stress and other chronic health conditions. 

I have put together a comprehensive treatment plan for people in Autistic Burnout that has helped hundreds of people to recover from Autistic Burnout.  If you would like to see an overview of my approach please see my free mini course for more information.  

Treating your symptoms as Autistic Burnout potentially gives you a clearer idea of the potential causes, and therefore lifestyle changes and strategies you might benefit from.  

Although we don’t have rigorous data on the prognosis of Autistic Burnout, I suspect recovery rates are higher than those of CFS/ME and given the increasing understanding of the condition, understanding your symptoms as Autistic Burnout may give you a more optimistic outlook.  

Treating your symptoms as CFS/ME potentially gives you access to practical support and help with pacing via a specialist CFS/ME service.

For this reason  I would encourage anyone in Autistic Burnout to consider seeking out and/or accepting CFS/ME as a diagnosis, and viewing this diagnosis as an umbrella term that includes Autistic Burnout.

Other Benefits

It’s worth noting that in many countries ME/CFS is a better recognised condition than Autistic Burnout.  This might make it easier to claim certain financial benefits and access practical support.

While Autistic Burnout might not be a recognised condition, as an Autistic person you can request reasonable adjustments at home, work and when accessing healthcare in the context of your Autism diagnosis, you may also be able to claim some financial benefits if your Autistic Burnout is having a significant impact on your ability to work due to your Autism diagnosis (if you have one). 

For Autistic Burnout, there is the additional benefit of a large network of Autistic People with shared experiences who are able to support each other and share helpful information.  This is both within paid communities such as my Authenticity: Course and Community but also through free networks such as my mailing list and other, unrelated free facebook groups and peer support organisations. 

Conclusion

While differentiating between Autistic Burnout and ME/CFS can be very confusing, the reality is that the symptoms have a significant overlap and many people with Autistic Burnout would meet the diagnostic criteria for CFS/ME. 

The treatment for ME/CFS is usually based around pacing, practical support and help to manage the psychological impact, all of which are also likely to be helpful for people in Autistic Burnout.

A diagnosis of ME/CFS is likely to increase your access to practical and financial support in a way that Autistic Burnout will not.

ME/CFS is likely an umbrella term covering more than one condition.  It is poorly understood and the prognosis for recovery is generally poor.  This can mean an ME/CFS diagnosis can bring with it fear of never recovering.  For this reason I would suggest you view Autistic Burnout as a sub-type of ME/CFS which we don’t have solid outcome data for yet.

The main difference between Autistic Burnout and CFS/ME  is the increased clarity around the cause of the symptoms.  This means that alongside the treatment for CFS/ME there are lots of additional strategies that are also likely to be helpful in your recovery.  For example: learning to safely mask less, managing your sensory needs and addressing shame and internalised ableism.

So, although it may be frustrating that your symptoms aren’t being understood in the context of Autistic Burnout, I would encourage you to take any support that is available, it shouldn’t do any harm, and it may well be helpful.

I specialise in working with people experiencing Autistic Burnout and I have written a blog series and have an online course and community to help people recover from Autistic Burnout and live authentic, energised and inspired lives.  For news of my latest posts and resources please join my mailing list.

References

Dawes, V. (2023) written evidence submitted to UK Parliament 

https://committees.parliament.uk/writtenevidence/117253/pdf/#:~:text=It%20is%20thought%20that%20as,sensory%20overload%20and%20losing%20skills.

Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med (Lond). 2005 Jan;55(1):20-31. doi: 10.1093/occmed/kqi013. PMID: 15699087.

Grant S, Norton S, Weiland RF, Scheeren AM, Begeer S, Hoekstra RA. Autism and chronic ill health: an observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults. Mol Autism. 2022 Feb 14;13(1):7. doi: 10.1186/s13229-022-00486-6. PMID: 35164862; PMCID: PMC8842858.

 Raymaker, D.M.,  Teo, A.,  Steckler, N., et al (2020) “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout.Autism in Adulthood. Jun 1, 2020

Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] Published: 29 October 2021



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