Autistic Empaths

Sensory Processing Sensitivity on the Spectrum and Beyond

Autistic Empaths is a project and book in the making about sensory processing sensitivity as a trait and how it manifests on the Autism Spectrum (ASD), in Sensory Processing Disorder (SPD), ADD/ADHD, synesthesia, BPD, addiction, and other conditions. Sensory processing sensitivity is the official term for what has been called the trait of high sensitivity; people who self-identify with it call themselves Highly Sensitive People, or HSPs. The trait includes increased empathy, depth of processing, overstimulation, and sensitivity to subtleties.

On capacity, hard work, and asking for help

In my health coaching newsletter this month I am writing about human capacity, and I have been thinking about it in this context as well. In my family, and in American (and other) culture, hard work is valued. It is a value I share, in the sense that I value contribution, creation, and self-sufficiency. But it is often taken to mean working past or through our capacities - and just living in that space, where every day takes a toll on our physical, mental, or emotional well-being. 

We are able to work beyond our capacities for good reason because sometimes it is absolutely necessary to do so. Emergencies happen, people need us, and circumstances beyond our control demand we do so for survival. But the decision to value hard work or financial gain to the point where we are unable to rest is a choice, and not one without cost.

I spent 28 years undiagnosed and determined to accomplish everything anyone else could do. In large part I succeeded, because being on the spectrum (without other disabilities) does not mean being capable of less. Academia was easier for me, but once in the workforce - commuting on the subway, sitting under fluorescent lights 8 hours a day (I don't think I have written a post yet without complaining about lights!), chit chatting with co-workers, spending hours on the phone, etc., I began to get sick. My energy levels had never been quite as high as others', something I largely ignored, but during these years I pushed through my capacity to such an extent I developed the early stages of an autoimmune disease. I also experienced neurological symptoms - migraines, intense brain fog, processing issues that led to me getting lost - that I now understand were really autism symptoms exacerbated by the physical stress by body was under with the autoimmune process.

Does this mean I do not have the capacity to work hard, or to work at all? Absolutely not. In environments that do not tax my system, I can work as hard and as long as anyone else can. I can easily spend a 10 hour day at home, working with clients over video chat, researching and studying for medical school, and writing and editing for this project. In fact, that sounds like a really good, productive day (and the added autistic bonus of hyper-focusing means taking fewer breaks!).

I recently asked for accommodations at medical school. This was the first time in my entire life I have asked an institution for help, and it was not easy to do, but the cost of attending lectures was simply too high and an unnecessary "expense." Ideally, I had hoped to be able to listen to lecture recordings from home, coming to campus for seminars, labs, and clinic shifts but giving myself more time away from the endless encounters with other students and professors, the overhead lights (there they are again!), and the general ambiance of an anxiety-ridden med school student body. This was, apparently, too much to ask (despite it being a common practice at other medical schools).

I was offered instead to watch the lectures from the remote room, a space set up with a live feed for parents who bring their babies to school. After a one-week trial, I am thrilled by how much easier my days have been. Yesterday after 4.5 hours of lectures in a row I went to the grocery store and had a completely normal experience (after attending in the lecture hall, I would not have been able to even bring myself to consider picking up food). I have come home without a headache and with enough zeal to make dinner and work a few more hours. (To put this in context: last term, after 4 hours of lecture, I would come home fending off tears and lay in silence on the floor for a half hour before I could function.)

This change has also definitely helped me settle into my autism spectrum diagnosis. There are moments, because my sensory issues tend to be my primary concern, that I have wondered if maybe I just have sensory processing disorder and am a bit outside of the social mold, that the autism diagnosis takes it a bit too far. But this week I have been honest with myself, and while the lack of overhead lights and the din of 80 students typing and shuffling is helpful, the overall decrease in the number of daily social interactions has been just as much so. 

This feels strange to admit to myself because I love people. I really enjoy spending time with my friends, having good conversations, catching up. I love working with clients (and in the future - patients!) about health and doing bodywork. These types of interactions, however, are quite different than the casual "how was your weekend" snippet conversations that are expected in contexts like the workplace or a lecture hall. 

I read an article that suggested people on the spectrum DO have a "social brain" we just filter it through our prefrontal cortex instead of running it automatically. The prefrontal cortex is our conscious, working mind, where we make decisions and plans. Running social interactions through the PFC is fairly equivalent to having each social interaction be like working out a complex math problem. You may really enjoy doing math problems, but people can only do so many a day, or at a time, before their brains are exhausted. The remote room has simply cut down on the number of interactions in my day. I still talk to people, but in the single digits, and not in an overstimulating environment.

The complex feelings of guilt around asking for help (when I do well in school) and having an accommodation when I am perfectly healthy is still there. This is even worse because, as a direct result of this accommodation, I am symptom-free. If I was in chronic pain, or still experiencing the autoimmune symptoms, sitting in the cozy remote room would feel justified, because I would still be in pain - just a little more comfortable. The strange thing about this in my case is that it is a complete shift: attending lectures in the lecture hall leads to symptoms, small at first and then progressively more serious as weeks go on, while attending lectures in the cozy remote room means I have no symptoms and am therefore perfectly healthy, so I don't look or feel like I deserve to have the accommodation. 

I am trying to reframe this experience in terms of capacity. This simple accommodation is keeping me from wasting precious capacity on stimuli that is not important for me to do my work. In a beautiful irony, refusing to push through my capacity - and asking for help - has greatly expanded my capacity for work. I do not think this lesson is specific to people on the autism spectrum. We should all hope and strive for lives that allow us to ask for what we need in order to do all we can, the best we can, and then stop, rest, and be satisfied it was enough.