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Why Adult Aspies Aren’t Being Diagnosed: A Human Rights Crisis

alien photoI’m an aspie—an insider term to describe a person with Asperger’s Syndrome.  It’s a label which underscores and is inextricably connected to every facet of my identity.  The only tragedy related to my neurotype is that I spent the majority of my life in the dark about it.

As a teenager and young adult, any time I read an article from a magazine or an op-ed piece about personality or lifestyle, I would experience consummate confusion.  I’m wired to constantly self-evaluate and examine—ad nauseam—every thought and belief I have; so, when I would encounter absolutes about how people are and what people want, I was left wondering what was wrong with me that I just never seemed to fit the category of “people.”  I looked like them, I almost sounded like them, but what I ultimately came to believe about people was that I wasn’t one of them. 

Eventually, after a series of catastrophic social missteps and tragicomic relationships, I decided to stop trying to understand people and to just become one of them.  I became invested in the trends of the culture, doing things that real people did.  I approached mimicry with the autistic fervor and detailed attention of a scientist, throwing myself into the rules and applications of fashion, make-up, name brands, hairstyles, and other odd things real people appreciated.  Strangers were more kind to me, men were more interested in dating me, and my co-workers seemed to respect me more.  Encouraged with the successful results of my social experiments, I became an expert at impersonating people until I couldn’t handle the weight of living inauthentically.

So how does one have pervasive autism and not realize it until she is in her late 30s?  It would be conceivable if she had little exposure to behavioral science; however, that wasn’t the case for me.  I spent more than a decade in public education working comprehensively with adolescent students with Autism Spectrum Disorders (ASD), I married a man with Asperger’s, I surrounded myself with friends who were on the spectrum, I obtained a graduate degree in psychology, and I interned for several years in a clinical setting with neurodiverse adults. Despite all of that, I had no idea I was on the spectrum until a friend pointed out to me that a character in a novel I was writing was an aspie.   “No, Beth, she has Borderline Personality Disorder,” I contested.  Beth advised me to abandon my scholastic approach and read from the literature informed and written by those working in the field and those on the spectrum, encouraging me to learn about phenomena like autistic burnout, masking, creative chameleons, and the female profile of an aspie.

True to my Aspergian nature, I threw myself into research, spending several consecutive days in a manic fever pitch, forfeiting sleep, food, and even blinking to consume all the information available about Asperger’s outside of the paradigm presented in academia.  What I discovered was that I had written a fictional character who was an embodiment of the prevailing insider checklists, like those compiled by Samantha Craft (2017) and Tania Marshall (2018), which detail the traits of aspie females.  My protagonist was, in fact, an aspie; and, by proxy, so was I.  I had created her in my own image.

At first, I was incredulous.  I had no problem interpreting the social cues of others; in fact, I was hyperaware of any body language which might indicate discomfort or boredom.  I could make eye contact without anxiety.  Though I didn’t enjoy it, I could engage in a social situation and become the life of the party.  Communication was a strong suit.  I had a remarkable penchant for interpreting the layered complexities of literature, had no difficulties with metaphors or irony, and my ability to empathize was so overwhelming that I had struggled to cope with it.  I have come to understand that the limits of accurately describing autism in academic literature are a reflection of neurotypical (non-autistic) people interpreting our behaviors according to the perceptive framework of neurotypical norms.

When I received an official diagnosis, I suddenly had one answer to thousands of questions which had seemed disparate before.  I joined some groups for aspies and my world was immediately enriched.  I was welcomed to the fold, enthusiastically, by people who spoke the same language, perceived the world in the same way as me, understood my niche humor, felt my pain, validated my struggles, and with patience and empathy helped me to explore myself through the lens of Asperger’s.  It was the first time I had ever felt a true sense of belonging.  It was suddenly okay if I weren’t a real person.  I was an aspie, and that made sense.

For an aspie, little is more unbearable than unsolved mysteries and unanswered questions.  I spent more than three and a half decades of my life feeling like a broken and defective human being, being misdiagnosed and medicated for conditions I didn’t have.  Sometimes, the medications caused me to feel deeply suicidal.  Other times, they caused neurological tics, agonizing restless leg, and even seizures.  They muted the sensory mechanisms I had intuited to maintain stability and regain equilibrium, rendering my only coping mechanisms for overstimulation inaccessible.

Cassidy, et al., 2010, published a study in which 367 newly-diagnosed aspies were surveyed.  Among the respondents, 66% had engaged in frequent suicidal ideation, and 35% had made plans or attempts to end their lives.  The authors of the survey interpreted the results to mean that the condition itself was responsible for these numbers; however, the neurotypical (non-autistic) authors failed to consider what would have been the most relevant impetus for that depressive rumination—that the respondents were newly-diagnosed.  They, like me, had spent their lives isolated, disconnected, and haunted by unanswered questions.  They had not yet found their people.

It is a moral imperative that strides are made to include the voices of the autistic community to inform the academic literature, treatment approaches, and diagnostic criteria for Autism Spectrum Disorders.  I conjecture that, given the unrelenting search for answers and the reverence for scholastic merit innate to people on the spectrum, we will self-advocate and find our way to a diagnosis if the academic literature reflects more accurately a profile of our neurotype as we see ourselves.  While the efforts of autistic advocates to raise awareness are important and illuminating, many of us will not know how to find our way to them unless we are first able to see ourselves accurately reflected in diagnostic criteria.

 

 

References

Cassidy, S., Bradley, P., Robinson, J., Allison, C., Mchugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: A clinical cohort study. The Lancet Psychiatry, 1(2), 142-147. doi:10.1016/s2215-0366(14)70248-2

Craft, S. (2017, June 21). Females with Aspergers Syndrome checklist. Retrieved from https://everydayaspie.wordpress.com/2016/05/02/females-with-aspergers-syndrome-checklist-by-samantha-craft/

Marshall, T. (2018, July 15). Aspienwomen: Moving towards an adult female profile of Autism/Asperger Syndrome. Retrieved from https://taniaannmarshall.wordpress.com/2013/03/26/moving-towards-a-female-profile-the-unique-characteristics-abilities-and-talents-of-asperwomen-adult-women-with-asperger-syndrome/

Why Adult Aspies Aren’t Being Diagnosed: A Human Rights Crisis

Terra Vance

Terra Vance is an industrial and organizational psychology consultant and the proprietor of Acumen Consulting, LLC. She specializes in diversity, inclusion, multiculturalism, and poverty dynamics. To contact Terra, click here.


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APA Reference
Vance, T. (2018). Why Adult Aspies Aren’t Being Diagnosed: A Human Rights Crisis. Psych Central. Retrieved on September 20, 2018, from https://blogs.psychcentral.com/aspie/2018/08/why-adult-aspies-arent-being-diagnosed-a-human-rights-crisis/

 

Last updated: 14 Aug 2018
Last reviewed: By John M. Grohol, Psy.D. on 14 Aug 2018
Published on PsychCentral.com. All rights reserved.