Autism and ME/CFS

I was diagnosed with ADD later in life by a psychiatrist who was competent enough to realize all the coping mechanisms I had put in place that made me look more functional. I also suspect mild autism from extensive chats with autistic folks.

Interestingly, when I was on social media earlier in my illness to try to connect with others, I kept seeing the same “profile” over and over again (including in myself):

mid 20s young woman who never got an ADHD or autism diagnosis but definitely seems like a “mild” case, usually high achieving and hyperfunctional [edit: pre-illness] but this masks a pattern of difficulty getting things done outside of bursts of impulse or panic.

Able to figure out social rules “second hand” to the point that they don’t come across as socially inept, but constantly ending up with misunderstandings and inability to predict/understand the behavior of others to the same degree as everyone else.

Sensory intolerance that manifests as irritability and often is not registered by the person until later in life. As you note, also issues with fatigue and burnout, often (mis)diagnosed as depression or anxiety.
…

Obviously there might be any number of confounders causing me to notice this pattern when there really isn’t one. It’s a vague enough profile that it could feasibly be applied to many that don’t have any autism or ADHD-like issues.

It just always struck me how often I kept seeing this exact pattern among young women with ME/CFS.

 

I don’t think this is necessarily a problem as I suspect it’s a bit of a “double whammy” situation for autistic women. You’d just be checking if ME is more common in autistic over neurotypical women, and more common in women than men with autism.

 

According to the Autism SubReddits, it's because women mask (Disguise their Autistic traits) more.

 

Yes, women face much steeper social consequences for not behaving as expected especially at a young age. I witnessed it first hand when I was a tutor (and experienced it to a degree myself).

Young autistic boys who don’t behave correctly face outbursts of exasperation—getting yelled at and corrected when their behavior gets a little too outside the norm.

Young girls who don’t behave correctly get all the same, plus they get subjected to what I can only describe as a constant collective psychological conditioning process. It feels like everyone in their life turns on them and constantly tries to modify all their behaviors through shame until they learn to just pretend that everything’s fine. [Edit: even strangers feel entitled to join in on this disciplinary process if it’s a young girl that’s acting “wrong”]

The ones with enough capability to mask just continue doing that their whole lives. The ones who can’t are viewed as extra difficult cases [edit: and are the most likely group to end up with a diagnosis at all]

 

I had not remembered looking at the blog mentioned in the first post. I may contain a lot of material worth thinking through. Unfortunately, in the diagram showing putative overlap between ME/CFS and autism almost everything in the overlap zone looks dubious and a good part of it spurious.

But the text may contain more of interest. I need to have a detailed look.

 

That was my reaction too, as an autistic person and the parent of an autistic child.

 

With respect, and not to minimise your experience at all, but I had very similar experiences of constant conditioning to perform 'masculinity' I was growing up (autistic man diagnosed late in life) with devastating consequences in terms of my mental health.

Autistic men like myself often become the socially acceptable scapegoats for psychological abuse and serious physical violence too. I learnt very early on that people thinking I was normal was not just about whether people liked me but whether I got hit and spit on and a thousand other cruel things.

But yes I have a close female friend who I never even considered being neurodivergent until she was diagnosed, and when I look back it's quite obvious.

On the subject of a link between autism/adhd and ME, I see it anecdotally in support groups for sure.

I experienced something like an extreme autistic burnout when I was 18/19 and had bad insomnia, dpdr and mental health issues ever since. I now suspect this was a prodromal phase of ME

 

Unfortunately, it repeats all the usual misinformation about personality, stress and goodness knows what. I think I will keep to S4ME Factsheets.

 

Yes, not to say that "constant conditioning" is absent in how autistic men are treated--just that there is a specific pattern stemming from societal misogyny that seems to result in the observed pattern of autistic women being more likely to evade diagnosis (or even recognize that their own experiences fit with autism).

The conditioning that I'm referring to is definitely tied into pressures to perform femininity as well (and specifically the dynamics in social interactions that entails). But it also has aspects of social enforcement that are unique simply because it's being enforced on girls.

It's an experience that exists at the intersection of what autistic men also experience by virtue of being autistic, and what women experience by virtue of being women, which gives rise to dynamics of interpersonal violence (physical, mental, and social) that may not necessarily be experienced by autistic men and allistic women respectively [edit: in that particular way].

 

Yes I completely get what you're saying. It's very interesting the similarities and differences in experience.

FWIW I have a lot of autistic traits more commonly seen in women, which may have contributed both to my experiences and late diagnosis.

Unfortunately I was diagnosed shortly after getting ME and confused my ME symptoms with sensory sensitivities and burnout for quite a while.

 

Same thing happened to me. I was stuck un a noisy house between 2001 and 2013, the sleep deprivation got gradually worse and as my Deteriorative Sensory Overload got worse, I kept getting disturbed during my sleep more and more. My doctor refused to write a letter to the local housing association stating that the house I was living in was destroying my health. I didn't manage to find a new house until it was too late and now my sensory issues are permanently worse, I'm bed bound and have been peeing in to bottles since 2013. This is what I mean when I say the treatment for ME is consideration

Same, I was misdiagnosed with CFS when really my fatigue, brain fog, and sensory issues were Autistic Burnout.