Theory on why autistic people have autistic burn out and comorbid health issues
Spoiler: you are not broken:: ORIGINALLY PUBLISHED NOVEMBER 20th 2024
Dear soft heart,
Today, I want to present to you my working theory as to why autistic people experience both autistic burn out and comorbid health issues from a nervous system education perspective.
This is shown in various literature, but one of the most accessible pieces I recommend if you want to get a quick but also very detailed understanding of this at a low cost is the book Sensory Trauma by a team of amazing advocates, researchers, etc:
I am also pulling from my extensive knowledge bank as a nervous system health educator and coach which is a field I trained in and worked in for a decade, from 2014 to 2023, until I experienced quite a body collapse that I am still in the midst of uncovering this year. While this is both informed by my own personal and professional insights, as usual with any information I present, this is not meant to be a one-sized fits all. It is meant to propose a working theory to understand ourselves more.
So let’s get into it, first let’s orient ourselves to the fact that autistic people most likely have a smaller window of tolerance than allistic peers.
There is no real test to see if someone has a small window of tolerance or not through something like scans, blood, urine, etc. We can track someone being in window of tolerance through their reported inner state and their external behaviors, which is the same way we can track if someone is not in their window of tolerance. There is a high subjectivity to this phenomenon and, there is such thing as a faux window of tolerance, which I will write about in the context of autism and masking soon.
But for right now - we have a window of tolerance. This system was originally created by Stephen Porges, who taught us the polyvagal theory. Here is what that looks like:
this graph is by far my favorite and you’ve seen it before if you’ve taken my group coaching programs or classes. It is by ruby jo walker and from several prominent teachers such as Cheryl Sanders, Steve Hoskinson, Steven Porges and Peter Levine (Ruby puts the credits at the bottom on the graph)
What I like to orient us to with this graph is that it’s really well done with the ladder of arousal that you see on the left side. When our arousal increases, we get “kicked out” of window of tolerance, which is also called social engagement. We then get pushed into fight or flight or freeze, the more the arousal (the stress) increases. That is the idea of polyvagal theory. What knocks an allistic person out of window of tolerance, which is to say, activates a stress reponse, is going to have to be more severe in terms of stimulus, than what knocks an autistic person out of window of tolerance. An allistic peer of mine is not going to wake up because their neighbor starts their car for work. I do.
This is the critical difference. The window of tolerance’s official science name is parasympathetic ventral vagal. When you are leaving window of tolerance so much on an on-going basis due to both nature and nurture factors (meaning, your autistic nervous system is already more sensitive to internal processes, such as emotions, and it’s way more sensitive to external factors such as noise, lights, stressors, etc), you are going to end up in either:
1. Sympathetic (known as fight or flight)
Or
2. Parasympathetic dorsal vagal (which is commonly known as ‘freeze’)
Now, we don’t always want to be in the window of tolerance. It is normal to be in freeze to rest and recoup (when we sleep for example) and it’s normal to be in sympathetic when you are exercising or cleaning or getting something done. This is true for everyone. Autistic or not.
When we are talking about a dysregulated nervous system, we are talking about a nervous system that is being activated in the wrong parts at the wrong time. Think, your sympathetic coming online when you are trying to sleep (insomnia), and your parasympathetic dorsal vagal switching on when you are wanting to work out and have energy to get tasks done around the house (fatigue, low blood pressure, etc).
What causes a person to have a dysregulated nervous system is that there has a been a built up of chronic stress that makes it impossible for a person to come back into window of tolerance, and then flow into the other two ANS states with ease and at the right times due to the chronic stress. Again, true for everyone, autistic or not.
Now for the autistic layer. Since the world is much more intense for an autistic nervous system, autistic people are spending way more time activated in a stress response (aka leaving window of tolerance), which creates an experience of chronic stress which then leads to dysregulation. Which makes it so that the ANS gets wonky faster and quicker, which may explain why autistic people have instances of severe autistic burn out (and the symptoms alongside it) or comorbid health issues that are associated with things like sympathetic dominance and a functional freeze response.
Now if we consult our handy graph again, but this time on the right hand side, we will see that things such as a decrease in immune function, digestive function and endocrine function happen when in stress responses. That’s especially true in prolonged stress responses, which can lead to different symptoms.
This is why it’s so important for autistics to have an environment that works for them, and their sensory profile, so that they are not running into sensory trauma (thus being pushed out of their window of tolerance more than not) as the team of researchers who wrote the above book I mentioned stated.
Bottom line, you are not broken and you make a lot of sense if you are autistic and highly sensitive, dealing with autistic burn out and comorbid health issues. I hope this orientation helps you if you’ve ever felt that way.
All my love,
Emily