“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”

-Frank Herbert, Dune

Once, when I was five, I went to a funeral with my parents and grandparents in Phil Campbell, Alabama, near Tuscaloosa. The funeral was for my great grandmother, who had apparently been in very poor health for a while, according to my grandparents. The day of the funeral was warm and balmy, framed by diffuse sunlight, soft breezes and birdsong. After the burial, people lingered in the cemetery, saying hellos and commiserations to distant friends and family members in town for the funeral. Eventually, as with any family gathering, cameras materialized from handbags and suit pockets. I posed with my family in front of a frothy bank of those lipstick pink azaleas that just scream 'small southern town,' all gawky and awkward in the front row. I had no idea what to do. Two conflicting concepts drew guns and waged war in my head.

Concept #1

Smile for photos!

Concept #2

Don't smile at funerals!

Granted, these were both my childish distillations of guidelines for behavioral norms impressed upon me by my parents and grandparents. But to a five year old with a propensity for literalism, the contradiction was too much. Who was in charge here? How could these two worlds be allowed to collide? To smile or not to smile, THAT was the question! I had to decide. My aunt raised her camera. “Okay, everybody. Ready?” My head was spinning. I had to pick a facial expression and commit to it. As I often did when in doubt, I resorted to examining the facts as I knew them. The day was beautiful, the person who had died was no longer suffering (as I'd heard people say over and over all day) and my grandmother was always so pleased when I behaved like a sweet little lady, so.... This seemed to settle the whole thing. I held my head high, took a deep breath and cheesed it ear to ear.

Snap!

I never heard the end of it. When the photos came back from Kmart or wherever, my father was utterly brutal in his mortification. “I've never been so embarrassed in my life! Why are you smiling like that? It was your great grandmother's funeral!” He thrust the photo into my hand. “What's wrong with you?” I didn't have an answer for that, so I just looked at the photo I now held clenched in my fists like a subpoena. Staring up at me were four composed, somber adults and one little blonde girlchild, grinning ear to ear and making spazzy jazz hands for the camera. In retrospect, it seems like a lot of fuss over nothing and that the adults involved who got so bent out of shape clearly have some pretty big problems of their own. But none of that changes the impression the whole incident made on me. Now, when I think back through my life, I see this as the beginning.

Up to now, my blog has consisted exclusively of scraps and fragments of ideas for short stories or novels. I've used the blog format as a testing ground, a place where I could throw out an idea, get some feedback and get acclimated to the idea of other people reading my work. Now, I think it's time to level up and expand the scope of this blog as I transition towards, hopefully, writing full time. I'll still have to keep my day job for now. I hope this doesn't affect my writing too much but, since dividing time between between this blog and the novel I'm developing will inevitably be an issue, it probably will. But I'm not going to let that stop me. I know I'm just starting out, a lifelong closet writer with flaws and scars and imperfections to boot. In the past, I've let a strange fear of the mistakes I might make hold me back, keep me quiet and hesitant. But now, I just don't care anymore. All I ask is that you read what I write with an attitude of discovery and patience. These are my baby steps and I know it will get better all the time.

I've been wanting to blog about my personal experiences with autism for a while, but always felt inhibited about doing so. Maybe I felt this way because I was finishing my nursing degree and establishing a career in a small town and didn't want to be conspicuous. Maybe I doubted the validity of my experiences. That wouldn't surprise me. Once I started actually telling people I had Asperger's syndrome, I was routinely told “But you don't act autistic.” I almost felt that, at times, people were contradicting me outright. This in and of itself is interesting, as the motivation for telling someone that you know more about them than they know about themselves is unclear to me. And, as anyone who actually knows a bit about Asperger's is aware, women often present quite differently than men in that we're considered to be more skilled at mimicking 'normal' social behavior (appropriate facial expressions, tones of voice, ect.). But none of that really matters anymore. My autistic traits are part of what defines me and have been all my life, for better or worse. As I expand my pursuits in writing and art, I feel a visceral need to pull the mask away and let you see what I'm really like underneath. And since I'm just an overgrown kid who's in love with Halloween, Vodou and all things macabre and mysterious, this is a very exciting feeling. So take my hand (metaphorically only, please) as I step from the shadows into the light. Don't turn away in fear now or you might miss something good!

I was formally diagnosed with Asperger's syndrome while living in England in the summer of 1999. Pretty cool, in a science fiction-esque sort of way. Anyway, the doctor evaluating me was really surprised that I hadn't been diagnosed prior to my twenties, considering that I'd been hospitalized three times between the ages of fourteen and seventeen for exacerbation of behaviors that clearly fit diagnostic criteria. I can only assume that my father's then spiraling alcoholism and the cripplingly maladaptive coping mechanisms that my parents displayed during their involvement in my treatment overshadowed the more subtle clues on my diagnostic path. I can't help but feel compelled to assume than an earlier diagnosis could have possibly changed so many things in my life for the better, but then you never really know. At any rate, I was just thrilled to have a diagnosis. Finally, so many things began to make sense. There were actually reasons for the so much of what I felt, how I acted, what was important to me- reasons that helped me understand and accept myself more than ever before. The whole experience of diagnosis and learning what it meant to be neuroatypical has been and continues to be a revelation for me. I've devoted much of my adult life so far to learning to deal with the difficulties. Now, I've decided that the time has come to explore the benefits.

“C'mon, c'mon, c'mon, c'mon and touch me, baby. Can't you see that I am not afraid...”
The Doors

Everybody wants and/or needs to be touched sometimes. But for us autistics and Aspergians, touch can get a little, um, touchy. For someone on the autistic spectrum, the intensity of the neurological impact of tactile stimulation coupled with a propensity for accruing a build up of sensory input more quickly than a neurotypical person can make even very casual, noninvasive tactile stimulation uncomfortable. In fact, these two things often lead to an inability to tolerate all kinds of sensory input and, if not intervened upon, can cause a meltdown. Meltdowns suck. They're very fatiguing. Imagine running a marathon, breaking the finish line tape, collapsing on the ground with exhaustion and instead of everybody patting you on the back and giving you a trophy, they just stand over you and shake their heads, whispering to each other in ominous tones. No bueno. Anyway, my first memory of a serious tactile issue involves socks. Specifically, the seams that run across the toes of socks. Oh, the battles my mother and I had over how to get a sock on my foot without it feeling like I had electrified polyurethane rope coiled around my toes or something. These days, I'm happy to be a grown woman who can buy her own seamless socks, thank you very much. But I'll never forget what a big deal it was at the time, both the discomfort and the conflict that ensued from trying to explain to my parents why I couldn't stand the way they felt. Conflict is also very fatiguing. Energy spent trying to make your parents understand why you don't want to wear certain items of clothing or speak in front of a group of people or join the cheerleading squad is less energy available for things a child is genuinely interested in and when so much of an autistic child's energy is already drained by all the interaction of just a regular day at school, it seems not just foolish but a bit abusive to appropriate even more of it for power struggles and self justification. Don't get me wrong. There's nothing inherently wrong with the activities I listed or with an autistic person pushing the boundaries of their perceived limits to branch out and do things they ordinarily might avoid. I think the difference is when it's at the autistic person's choosing (which can certainly be nurtured by gentle suggestions and encouragement) rather than “because that's what everybody else does.”

Problematic footwear aside, my more profound sensory problems come not so much from contact with inanimate objects as with with anything possessing a central nervous system. I experience a sensation I can only describe as 'conducting' the other person's emotional 'energy' (for lack of a less corny word), as if I'm feeling whatever they are feeling. Even the cat laying against me as I write this, while pleasant in many ways, feels a bit like being plugged up to a battery. I remember in nursing school, there was another student that gave me this feeling to such a degree that just standing near her was like standing too close to a transformer box. I spent my whole pediatric clinical rotation trying to escape her eerily invasive aura just so I could think straight to do my work. Experiences like these lead me to question some beliefs about autism and decreased empathy. Could what at times seems like diminished capacity for empathy in an autistic person actually be simply dysregulated empathy?

Empathy is important for me in my job as a psychiatric nurse. It helps me more accurately assess patients as well as helping me understand what they need in terms of therapeutic communication. In other words, it makes me a better clinician. I've found that my capacity for empathy is not only equal to that of any neurotypical but actually stronger. But stronger isn't necessarily better, because this results in a constant barrage of empathic input that I have little ability to regulate. The more I interact, I eventually become so overwhelmed that I start to shut down. The 'shut down' that follows a 'melt down' is a defense mechanism, the brain's way of saying “enough!” and pulling the plug on sensory input. I wonder if this pattern of over-stimulation followed by the withdrawal of shutting down creates a false impression of overall decreased empathy. Certainly, a person encountered during the 'shut down' phase of this cycle would seem less empathetic. I know when I reach that point, I'm often even temporarily nonverbal. And the more sensory issues a person has, the more frequently they would go through this process. So rather than simply lacking empathy, it seems like neuroatypicals are possibly prone to dysregulation of empathy, creating a pattern 'input fatigue' that affects the person's behavior. I know there are potentially many factors involved in how neuroatypicals experience and express empathy. Author and autism advocate John Elder Robison discusses the concept of 'intellectual empathy' in his writings, where empathy is experienced more as a mental process and not necessarily expressed in an socially orthodox way. While I think that may be the case for many people on the autistic spectrum, I can't help but speculate about the overall effect dysregulated empathy could have on how we express our feelings and how we are perceived by others.

In a study published in the Journal of Autism and Developmental Disorders, Vol. 34, No. 2, April 2004 titled The Empathy Quotient: An Investigation of Adults with Asperger Syndrome or High Functioning Autism,and Normal Sex Differences, the researchers found that, although the test subjects did seem to lack reflexive empathic reactions to various situations, when further assessed regarding the effect their behavior had on others, they expressed concern and remorse that they had caused pain or upset. This is very different to the behavior of a psychopath or sociopath, who not only can generally predict and anticipate the emotional reactions of others to his or her behavior but often uses this knowledge in a calculating way to manipulate others. I'm not sure just what this proves, besides a certain level of consistency in behavior among the test subjects, who were all on the autistic spectrum. But it certainly quite emphatically implies the need for more self advocacy on the part of the autistic community. A person who doesn't think like me, no matter how potentially intelligent or observant, will never be able to truly know and describe my experiences. Think of it this way, if a loin roars at you from behind the bars at the zoo, you can hypothesize that she's angry, hungry, frightened, frustrated, hates your stupid guts, you name it. But what you may never know is that a zookeeper just quietly transported a swan past the lion's enclosure right outside of view. You may have been oblivious but the lion knows all about the swan because she can smell it! At the end of the day, it's all about perception! I am the lion! (Note: This was a real event from my childhood, which took place at the City Park Zoo in New Orleans, LA. I was right against the enclosure fence. I felt the lion's breath, stared into her eyes and realized she would ALWAYS know more than me.)

Back to the incriminating photo. When I see that picture now, I can't help but laugh. The sad part is, I'm sure no one present gave a damn that I was smiling like I was on the red carpet instead of at my great grandmother's funeral. I'm sure my great grandmother looking on while surfing the ether didn't care, either. But I can see now that the reaction I got from my dad made a big impression on me, one that I'll never forget and apparently will work very hard for the rest of my life to transcend. All a person with autism wants is the same chances to learn and make mistakes that everybody else gets.

You may wonder how all the things I've talked about in this blog tie up. The introduction of my foray into writing, autism, sensory issues, empathy. It all comes together nicely to illustrate the ultimate point of this blog entry. Which is that I can't do the 9-5 'constant interaction with other human beings' thing anymore. It's wearing me out, physically and psychologically. I've tried very hard to fit into the neurotypical world. I've made very convincing masks and worn them well. But somewhere in the process, I betrayed myself and lost the plot. And here I am now, struggling to be someone I never really even wanted to be in the first place. Maybe I had something to prove. I probably shouldn't be so honest. Maybe it makes me look weak or unprofessional. Truthfully, you could balance the number of fucks I give about that on the head of a pin. Behold me, for I am the truth. This journey begins now, at this moment in time with these words. I might suck at this. I might fail. But then again, I might not.

#autism #aspergers #newwriter #neurodiversity #southernlit