More often than not, when autism is used as a metaphor it perpetuates and expands damaging misconceptions, particularly around capacity for empathy.Read More
Trauma, both developmental/complex and acute, reaches far deeper than I ever knew. It can show up as seizures, food sensitivities, autoimmune disease. It can hide, buried beneath resiliency and loud "I'm fine"s, sneaking out as insomnia or disordered eating or addictions or an inability to let love nourish us. It can force us out of our bodies, distanced from our own experience in order to function.
And healing - uncovering our strategies which served to help us survive to this point in our lives, but limit our ability to live full and rewarding healthy lives full of choice and joy - is work. Hard, exhausting work. To heal without diving into the deep end and retraumatizing ourselves takes time and careful loving attention. Patience. Self-compassion. Trust in the process.
Healing is everyday work.
I do not often allow myself to consider that part of my neuro-difference is social. It is easier to walk away from a restaurant or bar and feel that my nervous system's depleted response is a result of the lights, reverberating sound, or symphony of smells, than it is to admit that the sheer effort of engaging is part of the picture.Read More
The fascinating thing about my “special interest,” something that supposedly makes me “more autistic,” is that it makes me look much less autistic.Read More
The word congruent means "in agreement or harmony." In time, it registered that a counselor is being congruent when our words match our demeanor.
Why is interacting with incongruence so much work? Practically speaking, it means that during those "I'm fine" conversations I am trying to track two different levels of experience - the spoken and publicly acknowledged, and the inner, authentic experience of the person I am engaging with.Read More
You have probably heard someone say a version of the following: "We are all on the spectrum." Or, "Everyone is a little bit autistic." It tends to be well-meaning, a way of reflecting shared experience and humanity and perhaps social awkwardness. However, like so many things, well meaning or not the phrase is problematic. There may be an intention of connection behind the phrase, but it feels more like erasure.Read More
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.Read More
As I start diving into the neuroscience research for this project, I find myself dismissing some research for untraditional reasons. Not only because the research methods were faulty, the design poor, or the outcomes forced, but because they asked the wrong question to begin with. So much of the research, especially around autism spectrum, is completely out of touch with the reality of the experience itself. Every time I read a description of stimming that describes this motion as "flapping" I respond as though I have read a typo; it is shaking, not flapping, like Qi Gong or other forms of shaking meditation. Birds flap. People shake. (Would love to know if other #actuallyautistic people resonate with this! Comment below.)Read More
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.
To cure me would be to change my brain, how my mind works and how I experience the world. What is that, if not who I am? There are aspects of my experience that are more difficult than they are for other people (particularly around sensory processing), but there are just as many things about my mind that make different things easier for me. I would not give up my intensity of focus and ability to process detail in order to be able to easily sit and talk to a group of people under fluorescent lights.Read More