From Autism to cPTSD—How my unsupported autism led to a stress-induced heart event at age 34
Yesterday I shared my theory on how autism directly causes cPTSD...
Particularly, how autistic UNMET NEEDS cause cPTSD over time...
And by far the most asked question was... what unmet needs?
So, today I’m going to share how this causal chain from unmet need to cPTSD played out in my personal life to put the theory into concrete terms for those trying to figure out if it maps to their own lives and experiences.
I’ll start with the end and then work through the logical chain of my theory to explain what I believe led to that outcome...
I believe my unmet needs led to a life-threatening heart event (stress induced cardiomyopathy... the ER doctors called it a stress induced heart attack).
I was 34 when this happened.
I believe it was due to MANY combined factors... too many to go into in a social media article... but I’m going to walk through one of the main ones that I think most autistic people will resonate with.
Sensory anxiety...
I believe sensory anxiety was one of the main root issues in this story... the underlying need being sensory regulation...
At the time, I was living in a multi-family home, where we shared a wall with another family.
I worked from home, and one of the adults next door was a musician.
Before I continue, I want to be clear that I don’t believe anyone was in the wrong here. This was a situation of conflicting needs and was no one’s fault.
But back to my story...
During working hours, my neighbor would play the piccolo on a relatively regular basis.
At first, I tried to leave when they were playing, but, being that my job required me to be in front of my computer for most of the day, that solution quickly became untenable.
Over the course of at least a few weeks, my sensory anxiety was triggered regularly.
In other words, my nervous system was constantly activated.
Our neighbors were incredibly kind people and extremely reasonable... so at a certain point, I remember asking if they would be willing to practice in another part of the house. (Even though their music room was on the other side of my office wall.)
They immediately obliged, without a single ounce of hesitation. (Again, these were good humans. And I am sincerely grateful for that.)
But my sensory system did not care. Even though the sound was less intense, it reacted to the (now much lower decibel) sound as though it were still coming from the same room.
This is the part that I think most people don’t fully understand about sensory anxiety. It’s not logical. It’s nervous system activation.
We don’t control it. Our nervous system doesn’t think “that sound is now much lower, so I should respond accordingly with less anxiety.” I honestly wish it did.
Anyway...
This probably went on for about 2 months.
In the meantime, my life was filled with other unmet autistic needs that I won’t get into now.
But between the sensory anxiety and everything else... it all compounded in my system... intensifying as the days went by... putting an INCREDIBLE amount of (physiological) stress on my heart, until...
One day, I was sitting in my office during working hours, and I could feel my chest getting extremely tight.
I remember taking very slow, intentional breaths... but continuing to work (because, let’s face it... I was so used to feeling run down at this point that this experience did not instantly click in my brain as different.)
This feeling went on for the entire day.
My kids were very small back then (3, 3, and 5, I believe)... and I remember pushing through the rest of the day and night, making sure they were taken care of as usual.
At some point in the late evening, I started feeling lightheaded and noticed a dull pain in my left arm.
I remember lying in bed, noticing all of this, but for some reason, it still didn’t click that I should get checked out.
While lying there, my husband called to check in. He had finished work and was on his way home.
I told him the kids were asleep and that I was feeling off. I described what was happening, and his reaction was instant... he told me I needed to get myself to the ER.
I vaguely remember engaging with our neighbors about the kids being asleep, and them being the kind souls that they were, agreeing to keep an eye on them until my husband got home.
Fastforward a few hours...
I was diagnosed with stress induced cardiomyopathy after being put through an invasive procedure to rule out blockages in my bloodstream.
(They called it a heart attack in the hospital, and I remember how shocked they were when I told them my age.)
Now, to be clear... I believe what they called “stress” was actually cPTSD.
In other words... my nervous system had internalized ACTUAL TRAUMA over time...
Which kept compounding and intensifying...
And eventually led to a complete shut down of my nervous system... which showed up as stress-induced cardiomyopathy.
This is not just... autism caused my heart event... this is...
Autistic brain wiring
↓
Unmet need
↓
Sensory anxiety
↓
TRIGGER/ANXIETY (trauma)
↓
TRIGGER/ANXIETY (more trauma)
↓
TRIGGER/ANXIETY (more trauma)
↓
TRIGGER/ANXIETY (more trauma)
↓
cPTSD (accumulated and compounded trauma over time)
↓
System shutdown
---
Now, what I just shared is only a tiny sliver of the full story... and only a VERY small example of autistic unmet needs... so please keep that in mind when processing all of this.
Before I end this article, I want to acknowledge the next most asked question I keep getting...
Not just from yesterday’s article, but in general, any time I talk about autistic unmet needs leading to catastrophic outcomes...
What on earth can I do about it? I’m drowning and at a complete loss.
I’ll be writing an article on this very soon...
In the meantime, I sincerely hope my story makes the theory a bit more concrete for those trying to figure out if it maps to your own life experiences.
And if it does, please... please let me know. 🙏
And for those unaware, I’ll be conducting an independent research study on the connection between autistic needs and cPTSD next year.
If you are interested in participating, you can stay in the loop on my progress towards launch by signing up on my website. I’ll share the sign up link below.