7 Ways my Myalgic Encephalomyelitis & Autism Conflict

Note: MECFS does not cause Autism 

While this post will detail the many ways my ME and autism conflict, I want to stress that ME does not cause autism. Autism is a neurological difference and I have been autistic since birth.  

While patients with ME suffer from some symptoms that overlap with autism such as executive dysfunction and sensory sensitivities, autism is not more prevalent in ME patients.*

The myth that autism is caused by vaccines or infections is deeply harmful to the autistic community. We do not need to be "cured" of autism because the autistic brain is not inherently worse than the allistic brain, just different. 

While there are neuropsychiatric diseases like PANS/PANDAS and lyme that can cause autism-like symptoms and do require treatment, that doesn't mean that ASD as a neurological difference is not real. 

Source; Patients with CFS do not score higher on the autism-spectrum quotient than healthy controls: Comparison with ASD

https://pubmed.ncbi.nlm.nih.gov/29738079/rence 

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1.) Lack of energy for social masking

I both socialize less and am thus out of practice for masking and also do not often have the energy to do many parts of masking for example wearing sensorily disruptive clothes, engaging in small talk, and making eye contact. 

Additionally, I am able to function socially (often very successfully) because I learned to analyze people's motivation to determine what they are feeling. 

Unlike "reading people" by looking at their face and seeing how they are feeling, this is a highly taxing cognitive process. When I am fatigued or confused I simply cannot do it. 

This means that I often alternate between having a good idea of what people around me are feeling and being completely clueless. Something often confusing to those around me. 

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2.) Lack of energy to fight executive dysfunction 

I do not have enough energy to do things most of the time. That means I am even more reliant on my unreliable autistic hyperfocus to get anything done. This lack of executive dysfunctioning also carries backwards and makes pacing more difficult as I am often less able to plan out my day than a neurotypical person.

Additionally, because pacing requires a large amount of self-control and executive functioning, my autism in turn also makes my MECFS worse by making pacing more difficult.

I simply cannot follow the sort of routine many MECFS influencers do because my ability to switch tasks between working and resting is really limited and switching tasks takes me a large amount of energy. I also cannot control when my hyperfocus will start and stop which gives me very little control over when I can do "work" (ie. Writing)

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3.) Compounding of sensory sensitivities

Frequent migraine and light and noise sensitivity are common parts of MECFS. Being oversensitive to stimuli in general is part of autism. Combined these two facts means it is incredibly easy for me to be overwhelmed by my environment and experience sensory overload.

More generally, my autism makes certain specific symptoms far more unbearable. For example, hives and itchiness is a sensation that I have never been able to tolerate and often caused me meltdowns and distress as a child over things like sock seams and uniform material. Now this symptom is a daily part of my life.

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4.) More Disruption to Routine and Forced Sensory Distress

Hospital visits, doctor visits, and day-to-day symptom variation all make it much harder to keep a consistent routine, something that stabilizes my autism. Because of my unpredictable hyperfocus, it is very hard for me to get enough rest. So when I can rest I need to do so as long as possible. This means my sleep cycle is also extremely unpredictable. 

Additionally, many medical procedures and routines I must do to protect my health are highly distressing to my sensory needs. For example, sublingual tablets and the taste of my inhaler are often horrible experiences for me but I need them to alleviate severe symptoms. 

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5.) Mental Health Challenges of Being Ill Compound Likelihood of Meltdowns 

Secondary or reactionary depression as well as medical trauma mean that I now have to deal with significantly larger mental health concerns than when I was healthy. This constant load on my mental health means that even smaller disruptions to my sensory environment and routine can trigger meltdowns. 

Furthermore, meltdowns are much more dangerous as simply crying can be enough to trigger post-exertional malaise. PEM then leads to further sensory sensitivity and more likelihood of being overwhelmed. 

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6.) Inability to Pursue Special Interests

The loss of hobbies and careers is obviously distressing for anyone. But as an autistic person losing my special interests was particularly devastating. It threw me into a deep state of grief worse than any I've experienced from losing friends or relatives. 

For autistic people special interests are more than just passions or hobbies. They are deeply tied to our identities. The hyperfocus we get when working on them is like a home or safe space and often one of the only times when the world does not feel hostile. 

Losing my special interests of music and computer science was like losing my arms and legs. To this day despite having new interests like ME advocacy, I feel constantly incomplete. Like the death of a loved one, I will carry this grief for the rest of my life.  

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7.) Compounding of Ataxia 

Ataxia or inability to speak is a symptom experienced by many people with severe ME, particularly during PEM. For me it occurs primarily during severe crashes. 

Being autistic means that when I am too overwhelmed speaking becomes more difficult. Because crashes are so overwhelming this compounds the ataxia caused by MECFS.  

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I Didn't Get More Autistic

Much of the difference in how I relate to my autism now versus prior to ME is quite negative. 

Wheras before I associated my autism primarily with positive things like my special interests, stimming, hyperfocus etc. 

When I got sick I lost much of those positive benefits. 

Additionally, the parts of my autism that made my life harder like meltdowns, sensory sensitivities, masking and ataxia became much more difficult to work with and much disruptive to my life. 

In other words, my "functioning" related to autism decreased significantly. It went from a neurodivergence that helped me as much as it made things difficult, to a disability, something that makes me less able to cope with life. 

But none of my traits or underlying neurology changed. All that changed was whether my circumstances were accommodating enough for me to work them into a shape that fit around my autism comfortably or whether I stuck out like a sore thumb. I didn't become more autistic my circumstances simply revealed my autism. 

As an autistic person, I thrive more than anyone else in the right circumstances, but I am also less adaptable. In the wrong circumstances, I suffer more as well. Even if in this instance it is unfortunate, it isn't good or bad. It's just who I am.

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Autism is not a disease. It is neurodivergence. But that doesn't stop it from interacting with Myalgic Encephalomyelitis.

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I don't just have a unique personality. I have ASD. It can be a gift and it helps me to thrive when I can control my environment.

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But MECFS steals control. It subjects me to sensory distress that would send my childhood self into constant meltdown.

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I wish so dearly that advocacy was just my hobby. Or my passion. 

I would be a better advocate if it were because I would be able to Stop Rest Pace as necessary. Because sustainability is a pillar of disability justice my brain denies me.

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But it is not. It is an obsession. I can't turn off my thoughts about it. If I restrict my phone time my brain will still keep writing.

I choose to make the most of it. To fight for disability justice because it is better than the alternative of some other obsession with far less purpose. 

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For me autism so often destroys moderation. Sensations are intensely pleasurable or unbearable. It drives me to seek order and control yet it steal my self-control with executive dysfunction and compulsion.

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Post Exertional Malaise compounds this. In the moments I most need pacing I am subject to the least executive control and my ability to think rationally is distorted by cognitive dysfunction.

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I hate making this post. I hate that my autism could ever not be something I love about myself.

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My autism makes me

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-Passionate

-Creative

-Morally driven

-Weird

-Empathetic

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And has given me amazing experiences and talents.

Autism is not always a disability but my circumstance has turned it disabling.

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Socially, the aspects of ASD that are often societally disabling benefit me as a bedbound individual. Being introverted and drawn to make close connections has been ideal for my situation. It does handicap me in doctors' appointments but that can be worked around.

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But the way autistic sensory and executive functioning issues interact with my ME has truly been a challenge I have not been able to conquer

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I wish this post had answers. Instead, all it hopes for is empathy.