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.

Reframing and spinning

One of the strangest parts of a new diagnosis, particularly as an adult, is the retroactive life reframing. Suddenly behaviors that I considered quirks or attributed to other things are being moved into the folder "autism" in my mind. 

Some of these are more obvious and were part of why I sought out a diagnosis to begin with. I experience a "veil" sensation that I now understand is a mild shutdown response, a way my brain attempts to protect me from the constant sensory onslaught and allow me to function. I lived this way almost every single day of my life until my mid-twenties when moments of clarity shocked me into realizing that my experience was likely not like others'. 

The most amusing reframe is spinning. I was a toe-walker as a child, and my mother's very logical and wonderful response was to put me in ballet classes. I danced intensively for 18 years. During and since, I have a habit of spinning, in socks on kitchen floors, especially when I am happy or having a pleasant conversation one-on-one. This used to be filed under identity: dancer. In the ASD evaluation, I was asked about repetitive behaviors. I have very few and remember nothing in particular from when I was a child, at least not anything that was ever commented on by others. But I do remember spinning. I loved to spin in the pool, tucking one leg up, slightly bent, and almost flip-flopping myself so the momentum would keep the spin going as the water rushed through my fingers on the surface. And while my kitchen-spinning is harmless and not especially frequent, I have to admit it isn't something I see most other NT adults do. Turns out spinning is my happiness stim (that and a mono note hum I do without realizing; always the same note).

Contrary to most professionals advice (many discourage stimming because it looks like an obvious AS "symptom"), since I made this realization I have been increasing my spin. Intentionally spinning, as an experiment of self-study, is quite frankly fun. I haven't been able to figure out a more precise or relevant or important reason, it just feels natural and it feels good.

The most exciting re-frame for me has been the physical symptoms of AS. I have a history of autoimmunity and was quite sick when I lived in NYC in 2011-2012. My bloodwork consistently tests positive (even now) for autoimmune markers and specifically those for scleroderma. I never received a diagnosis because my widespread symptoms did not match the diagnostic criteria, particularly because they seemed both rheumatic and neurological, but did not fit multiple sclerosis. I am incredibly lucky that all of my autoimmune symptoms (fatigue, achy joints, muscle weakness, etc) went into remission when I went gluten and egg free, and there has been no disease progression since. However, I still have these "spells" of fatigue a few times a year that would terrify me that the autoimmune process was resuming. The fatigue felt different: autoimmune fatigue is hit-by-a-bus, heavy, constant, can't move or think sort of fatigue (at least for me). These spells are marked by needing to sleep 11 or 12 hours a night, but then I am able to make it through a few hours of the day just fine before crashing horribly. At their worst, I will spike slight fevers, which can be another sign of autoimmune conditions. 

Understanding that autism is a neurological condition and finally, that I am autistic, has been a huge relief because it means that these spells are not signs of a disease damaging my body so much as they are indications my nervous system is in distress. I believe my confusing presentation in NYC was because some of my symptoms were autoimmune and some were AS (migraines, getting lost/not processing, etc), which were aggravated by my physical autoimmune symptoms . Now, the autism fatigue spells seem to happen when I have "gotten behind" in processing (which explains why they tend to happen 3/4 of the way through a term at medical school, more from being at school than from the content itself). I need the extra sleep in an attempt to catch up (we process information in our sleep), and I can only do a few things in a day before I add too many new things to process. During these periods I long to be able to attend lectures from home, where I can just process the material and not the social and physical environment.

I am reading Aspergirls: Empowering Females with Asperger's Syndrome (which I highly recommend) and in the section on sensory processing (which is one of my primary issues), Rudy Simone writes about traveling to Boston and taking in the sites. That night, "even though I'd worn ear plugs and shades and had paced myself, I had taken in too many things for my brain to process. [...] While it [the overload] was happening, my temperature shot up to a fever." The fever connection feels unreal to me, but again is incredibly reassuring that this is a neurological symptom of AS. Migraines are another common expression of an overloaded brain, just like shutdowns and meltdowns. As a future physician (and even now as a health coach), understanding that AS is as much (if not more) a neurological difference that can have physical symptoms rather than a mental health disorder is incredibly important.

All in all, I am still me, diagnosis or no. I am both the dancer who twirls and the autistic who happiness stims and spins. Mostly I am grateful for these reframes because I am always grateful to understand things from as many directions and perspectives as possible.