Autism and ME/CFS

This is a rather comprehensive Wikipedia style article describing the overlap between autism and ME/CFS

https://neurodivergentinsights.com/blog/autism-and-health-issues?format=amp

Generally I spend most of my days horizontal, lots of naps and a brain on idle. I'm on a trip from west coast Canada to Europe. I didn't sleep "overnight" on the plane so was awake for 24 hours. Today my brain is active, alive and racing with ideas and connections like the good old days.

A severe lack of sleep often works well for me to temporarily banish my ME/CFS symptoms for quite a while. I wonder about the connection to the initial short term immune system response.

 

I have both diagnoses and have wondered whether my ME/CFS might have been misdiagnosed autism. I ended up rejecting this idea.

Autism is associated with autistic burnout which has not been studied much. Autistic burnout is attributed to "chronic life stress and a mismatch of expectations and abilities without adequate supports." I experienced something that fits this definition of autistic burnout but it was the result of years of trying to maintain normal life and continuing to relapse and having what is best described as PEM, and being misunderstood as not disabled. This led to years of nearly complete withdrawal from life where I had no interest in even trying and had no faith in interacting with anyone any more (because outside pressure from other people had caused the problem).

I suspect autism might be associated with a lot of problems that tend to be underestimated because people think in terms of a simple stereotype of autism of poor social skills that doesn't include debilitating fatigue, cognitive impairment, and other symptoms that are common in chronic illnesses.

I have higher physical function than most ME/CFS patients but also suffer what is best described as PEM. I need the ME/CFS diagnosis to make sense of what I'm experiencing and knowing how to manage it.

There was this study that reported a "higher risk of chronic disabling fatigue for children with neurodivergent traits, likely linked to higher levels of inflammation"
https://orca.cardiff.ac.uk/id/eprint/170644/

I remember that the FOXP4 gene has been linked to both long covid and autism.

Perhaps autism increases the risk of ME/CFS. @Chris Ponting can DecodeME tell us anything about this?

 

I imagine you could find statistics linking autism to all sorts of illnesses and attributes, because it's common enough to co-occur with all sorts of illnesses and attributes. It could just as well be chance.

 

My Autistic Burnout was misdiagnosed as CFS. There's a lot of overlap with the sensory issues, I had both deteriorative auditory intolerance and deteriorative olfactory intolerance which got worse with sleep deprivation.

 

Can you describe it?

 

I was late realized at 63. I agree that one of the defining differences between the two is PEM, which I've never seen mentioned with autism.

In my case, the realization about autism came when I asked myself why I was so insistent/consistent about exhausting myself with exercise routines when it was very clear they resulted in PEM.

On the other hand, those same usually aerobic routines are the only times I feel good, which I attribute to increased blood flow to the brain.

 

I knew a had a vague recollection....

Naviaux did a very small study treating autistic children with suramin. He later moved on to the cell danger response and ME/CFS.

That was around 2017.

 

I had unrefreshing sleep, brain fog, my eyes would sting from lack of sleep. I became a very light sleeper, with smaller noises being enough to wake me up. I developed synaesthesia and started to feel physically hit by certain sounds. The more I was exposed to an offending sound or smell, the more painful it became, I haven't fully returned to baseline over a decade later. At school I had a high IQ and good memory but over the years my cognitive faculties diminished, I had to drop out of college despite having great potential. I struggled with my special skills (I was originally talented at music but burnout diminished my skills). I remember becoming impulsive.

At the time I didn't have a word for burnout, I just called it tiredness because poor sleep made it worse and I thought everybody experienced sleep deprivation as Autistic Burnout.

 

As someone currently on several years long waiting lists for a very late diagnosis for autism and ADHD, I strongly suspect that my developing ME/CFS after experiencing life threatening health issues and a life time of depression, has a lot to do with living without diagnoses and spending a lifetime trying to fit in and meet neurotypical standards

I swore very loudly on reading this..I am getting really sick of the absolute lack of systemic curiosity and funding for research on any of these issues and having to randomly fall over significant answers on the internet.

 

Yes. This.Thank you for elucidating this so clearly.

I have had someone say to me that I am pathologising normal experiences, whereas actually what I'm trying to do is this, to seek out diagnoses to make sense of my experiences and symptoms and figure out how to manage them - especially with a dwindling supply of energy.

 

I have been wondering about the possibility of some common element to ASD and ME/CFS for a while but ASD is more common in boys. I think maybe there is a link but it is an indirect one and that it interacts with something that confers female bias for ME/CFS.

 

Is it though, or is it an historical massive under diagnosis in women?

 

mTOR overactivity has been proposed to be relevant to both autism and ME/CFS.

Loss of mTOR‐dependent autophagy causes autistic‐like synaptic pruning deficits in the brain.

 

The information I have seen suggests that there may well a diagnostic ascertainment factor but that may reduce the ratio from 4 to 2 in favour of boys. Why would autism be massively under diagnosed in women and not in ME/CFS? We might just about claim that autism had a ratio nearer 1 but that is still in contrast to a 3:1 for women to men for ME/CFS.

 

Maybe the same underlying molecular abnomality tends to manifest differently depending on the gender (and age of onset) and some additional factors.

 

I was wondering if there was less of a gap in the ratio between sexes now that autism prevalence in women is getting recognised and diagnosed so that perhaps it doesn't skew as strongly male as much as it use to be thought to.

 

This is an interesting idea. Frustrating that the research just isn't happening.

 

I think it is now.

 

By the way, I've met some diagnosed autistic adults through an association, and here's what I found:

It seems easier to connect with them, but maybe that's just due to my feeling of similar life experiences.

Most were women.

Mental and physical health issues are very common in this population, and fatigue is prevalent.

High functioning autism has a similar problem as "mild ME/CFS", in that it is highly underestimated by the general public, and is also dismissed by those who consider the severe form to be the only true autism/MECFS.