Researching Myself — Perspective from an NVLD Researcher, by Matthew

By February 14, 2018 November 12th, 2019 NVLD Bloggers

Few scientists have the opportunity to study their own disorder, however, that is exactly what I’m doing at the University of Southern California. I recently proposed a journal article on this diamond in the rough disability to provide intuitive cognitive models in tough spatial scenarios for NVLD individuals. Furthermore, I hope this will also reduce anxiety for NVLD test takers. Since NVLD is a small, under-diagnosed community with very few speaking on it’s behalf, I’ll give a snippet of what it’s like to live with it….

Visits with the psychiatrist were successful as running into a brick wall. “It’s a run of the mill anxiety disorder. I’ll write you 5mg of Busparone.” She, like every other psychiatrist I would see, was way off course. Over the next few years, I would shift differential diagnoses 14 times. Unspecified depressive disorder, GAD (again), Bipolar, Borderline personality disorder. If it existed in the Diagnostic and Statistical Manual of Mental Disorders (DSM)– the holy scripture of reference for psychological mental illness categorizations– It “potentially” ailed me. The medication merry-go-round yielded nothing. Prozac, Lexapro, Zoloft, the list never ended! All of them futile. I began to become disillusioned with psychiatrist visits entirely and stopped attending.

False diagnosis were nothing new. During Elementary I was evaluated for Asperger’s and then later exonerated after copious testing. They weren’t far off though, in the spectrum of social learning disabilities, NVLD & Asperger’s overlap. With the exception of impaired mathematics skills in NVLDs and a more severe communication deficit in Asperger’s patients, the two disorders are nearly identical. Back to elementary however– that was a fond time in my life. Childish awkwardness is covered up our own silly antics, often going unrecognized. I enjoyed toying with a creative imagination in groups of friends that had no anxiety, just a carefree vibe. Early education, until the brink of high school, was tranquil and comforting.

Entering University was no small feat. My friends of yore in early education had parted ways. Now I was tasked with making new connections. I always waited around in my room for calls, pacing and anxious to see if someone would grab something to eat or invite me over. The phenomena of phantom cell-phone ringing became a constant reality. Making friends was an arduous task; not being able to understand social cues, body language or facial expressions made quick conversations more difficult than the academics themselves.

This constant struggle is what makes living with NVLD a frustration beyond most people’s fathoming. Right off the bat, there is no definitive DSM diagnosis, thus, whenever we visit the psychiatrist we are told it is a slew of various other related disorders. Second, forming relationships is horrendously difficult. Requiring reassurance constantly and bagering your partner is a recipe for disaster, leading to ruin. Lastly, we are inept in certain tasks, but excel greatly in others (auditory listening, verbal communication). Some researchers call NVLD’s, “walking contradictions,” which is an apt title for us as we often walk around in confusion.

Matthew

Matthew is a Rising Graduate Student in Computational Neuroscience at the University Of Southern California. I intend to make NVLD rise in prominence as a learning disability and alleviate the condition.

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