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Tuesday, February 26, 2013

An Open Letter to Adam Lanza, The Media, and Society from an Adult with Sensory Processing Disorder




There are three things I know for sure about Adam Lanza thanks to the news media, as I sit and watch from my cushy perch miles away from Newtown: he had brown hair, he lived with his mother, and he inexplicably gunned down defenseless children. Oh yes, and he had Sensory Processing Disorder (SPD) – a controversial, neurological puzzle of a diagnosis direly lacking in research and medical support. I too have brown hair. I too have SPD. But there is one major difference between me and the skeletal figure whose face haunts the news: I would never hurt a fly.  

I was diagnosed with SPD in 2010 at the age of 27 after my new, forward-thinking therapist noticed I had some unique sensitivities. Rediagnosed, I should say, as I had been diagnosed with Panic Disorder, an anxiety disorder, back when I was 14. My old diagnosis never fit quite right. Yes, I felt anxious frequently, but under very specific circumstances – when the lights were too bright, when a noise was too loud or too high-pitched, when I could not tune out the myriad of voices conversing around me. I also hugged everyone in sight, and ravenously craved deep pressure in my torso and legs, and softness on my fingertips. I slept under piles of blankets – and never very well, I might add. I was scared and cautious about being in new environments. An old therapist once told me I worried about the wrong things – not for whether a neighborhood was safe and free of violence, but whether I would feel well in my body. Teachers described me as sensitive, and I cried (and still cry) at the drop of a hat. I was (and still am) quick to agitate, particularly in environments where the sensory input – the lights, the noise, the movement – feels big, bold, and out of my control. It is, as Beth Arky says in her piece What Is Sensory Processing Disorder? How To Diagnose Children With Sensory Issues in the Huffington Post, a “neurological panic.” A phrase I cherish. But I have always been very outgoing and bubbly – a friendly, passionate go-getter with a quirky sense of humor and a love of people and writing. SPD did not make me a murderer, it made me a little bit different, it made me strong; it made me a fighter.

I am a child of the 80s, born during a time when SPD wasn’t a familiar acronym, and so I managed to go untreated for a very long time. Once it was determined that I had SPD, my world finally came into view. I understood that my anxiety is a side effect of SPD and not the root of my problems (attempt to cope with the pain of poorly-processed sensory information for years, and I promise you will feel anxious too). I finally had a title, and a neurological reason, that explained in gentle, loving detail who I was, and why I have struggled. The SPD community is filled with adults who, like me, are coming to their senses and finally getting occupational therapeutic help. There are nurturing parents who want to help modify their young children’s’ lives to fit their needs, and parents learning how to assist their adult children in succeeding. There are adolescents learning how to transition into adulthood with a burdensome package of sensory requirements. Sure, our sensory qualms vary widely – there are seven senses (surprise! And a hotly debated eighth) and we can easily be over-responsive, under-responsive, and seeking sensory input all at once. We do battle with our senses on a daily basis, in the face of a society that has yet to understand our cause, and this struggle unites us in such positive ways.

Struggle, sure. Frustrating, yes. Disheartening, sometimes. But SPD is not a trigger. It is not the pulse of the horrific actions that occurred in Newtown, much the same way the Lanza’s brown hair was not the reason for the senseless slayings. We need to keep this in mind before we point fingers in a Salem-style witch hunt – before we look sideways at a young child who crashes into things more frequently than others; before we sever ties with an old friend who couldn’t keep up with our highly-social lifestyle; before we blame our children, neighbors, and closest confidants for being differently wired. Adam Lanza stole beautiful lives from aching hands. I will never dispute the horror and the tragedy of Newtown, and my heart is filled with love for the families of the lost. Adam Lanza also stole away a diagnosis in its infancy, yearning to be understood by society and the media. He put such an ugly spin on something I thrive with on a daily basis, in spite of the challenge. Those of us with SPD are the silent victims; forever entwined with the gaunt, hollow eyes and thin-lipped mouth of a killer.