Saturday, March 29, 2014

I Honestly Know Me: An Evaluation Of An Evaluation

This is a most unusual post. It does not deal with subject matter I normally talk about on this blog, or with anyone outside of my partner, my doctor, and my immediate family. This is my first post about my firm belief that I am an Aspergian (one with Asperger's Syndrome), and the devastating consequences that have resulted from my failing to realize this until well into my thirties. I can only imagine how many millions of people are struggling in their lives, in ways they can neither understand nor express, because they have no idea that they, too, are on the autistic spectrum. This first post is about the role that cultural stereotypes and my own constructed identity have played in making a diagnosis more difficult than I had expected. If not for the discovery of countless personal testimonials in books or online, I might still doubt myself about who I am and what it is that I am dealing with. Based on incredible feedback generated by past posts, I suspect many people out there are facing the same exact challenges that I am, and for the same exact reasons. And I hope that sharing my experiences may be beneficial to any of them who read this.

Part 1: August 29th, 2013

For the month leading up to the appointment, I was under the impression I would be undergoing a daylong series of neurological tests to determine if I, my family, and my referring physician were correct in the assumption that I have Asperger's Syndrome. I was so wrought with anxiety about what these tests would entail and how I would fare under them that I could not sleep for the two nights prior to what turned out to be a forty minute interview.

The appointment began at 8:30 AM. The neurologist came out to the waiting room to call me into an office where the evaluation began with a question along the lines of "so what brings you here today?". The neurologist was polite, but not especially friendly, with voice and body language suggesting to me that the neurologist felt I did not belong there and that this was a pointless exercise. Or, perhaps, that said neurologist was extremely tired. I told the neurologist about my family's encouragement in my being tested and my having many traits since childhood (as corroborated by relatives and many videotapes) up to the present. I told the neurologist that I have a family history of autism as well as bipolar disorder. I noted that while I had a cursory knowledge of Asperger's, I avoided researching too much so as not to impact my evaluation. I was asked a series of questions while the neurologist looked at a computer screen and typed.

I had begun the interview by stating that it was my sister who approached me about Asperger’s Syndrome after viewing Temple Grandin's TED Talk and being reminded the whole time of me. I indicated that growing up in a protective bubble with my parents and sister in a happy but insulated childhood allowed me to feel more comfortable expressing myself but meant that it took me much longer to pick up on how people in the world outside of my home would react to such expression. I even mentioned my “Vogue Boy” video because I felt that the performance people were seeing on video did not match who I really was off camera. What countless viewers interpreted as brave was in many ways blissful ignorance. (Something closer to my personality, if still meant for audience approval, was put on display in another video shot that same summer in a “1-2-3 Video” message booth.)

When asked about my early verbal communication, I referenced having been told over the years by my mother that I had uttered my first word at three months old when I greeted a housekeeper with a "Hi". The neurologist seemed skeptical. It may have been that this seemed out of character for a child with AS. But, that morning, I read the reaction as doubt that this event had even occurred. That at three months I had begun expertly mimicking sounds in response to specific stimuli seemed buried underneath overall suspicion, which fueled my subsequent insecurity about how my answers were being received.

I made it clear that I am a recluse living with my parents in my childhood home and that I had seen hardly any other people for the last year. I stressed that crippling social anxiety, not a lack of desire to be working, was the reason why I cannot get a job and turn my life around in spite of all the people who look at me and see nothing more than a typical “loser” stereotype. When asked about my sleeping schedule, I revealed with my trademark New England/Catholic guilt/shame that I am most inclined to go to sleep around 5 AM and wake up around 2 PM. This counters society's expectations of "normal", and I've spent two decades trying to conform, but it has been my natural tendency since puberty kicked into high gear at the age of thirteen. I didn't get a verbal response. But the neurologist's non-verbal response seemed to me, once again, critical and vaguely judgmental.

The most surprising interaction came about when the neurologist asked me if I dated or had girlfriends in high school. I told the neurologist that I’m gay, and that I knew this back then but was not out at the time. I told the neurologist that I did not cover this up by dating females, and emphasized that I was adamant about not leading girls on after a close female friend had had feelings for me which I could not reciprocate at a time when I could not be honest as to why. While typing, the neurologist stated, in regards to my being gay: “it was pretty obvious, but I have to ask”. At the time, I laughed, as I did not interpret it as hate speech. In hindsight, I feel this was part of an overall sense of dismissiveness that permeated the reactions to my answers.

Asked about my ability to read other people being angry or upset, I noted that my tendency was the extreme opposite: I always fear having just hurt people and I always think people are left upset. I begin to question every move I've made and everything I've said and in what way I could have hurt someone enough with what I've said or done to potentially destroy them. Someone telling me they love me one minute doesn't mean I won't be convinced I have not earned their hate the next minute, hence a perennial need for assurance. I don't know how much of this I conveyed in the office because what was on my mind and how it came out seems to have been somewhat disconnected. But I'd like to think I made it clear that my empathy, while abundant rather than lacking, is still extremely abnormal.

After giving my answers, I looked at my hands or looked at the wall or at the floor while the doctor looked at the screen and typed in silence. All of the neurologist's questions were met with honest answers. Most of these honest answers would indicate AS. But these were ultimately dismissed on the basis that: a.) I get along well with my immediate family, b.) I care intensely and obsessively about not hurting other people's feelings, and c.) "you seem amiable to me". According to the neurologist, my concern for the feelings of others indicated I did not have Asperger’s Syndrome, as “people with Asperger’s don’t really care if other people are happy”. The neurologist felt that my being close to my sister indicated I did not have Asperger’s Syndrome since the difficulty that people with AS have interacting with other people begins at home, and thus it would be unlikely someone with Asperger's would get along with family members.

The neurologist felt that simple therapy would treat what the neurologist perceived as severe social anxiety disorder, which had not only impacted my ability to pursue a job but also my ability to keep one for more than a matter of weeks or months. The neurologist felt that my experiences being a gay teenager at an all boys’ Catholic school in the 1990s could be largely responsible. The neurologist suggested that I was likely still dealing with unresolved anxiety from my semi-closeted high school years.

I reiterated something that I brought up early on in the evaluation, which is that I had been rapidly flapping my hands in states of intense thought or heightened excitement ever since childhood, when I did it openly, and that this is something I constantly still do in private as an adult. In the most alarming statement of the evaluation, the neurologist offered that this, too, was directly related to my homosexuality. “Most of my gay friends use their hands a lot” was the specific response. Once again, I laughed this off. 

The neurologist followed up this summation by noting that if I wanted to I could still make an appointment to undergo four hours of neurological testing to know for sure whether or not I had Asperger’s. At that point, I was anxiety-ridden, discouraged, and in doubt of my ability to understand anything about myself. I could not wait to get out of there, so I turned down the opportunity. I accepted the diagnosis despite my misgivings, I referenced my "Vogue Boy" video (no doubt a an unconscious suggestion to reconsider the diagnosis), and cheerily said goodbye with a big smile because I was so happy to be leaving. 

Part 2: March 29th, 2014

Over six months after my evaluation, I discovered that a number of challenges faced by my partner and I are commonplace in relationships in one which one (or both) partners have AS.  I proceeded to read books and testimonials from Aspergians writing in defense of their unique emotional make-up. Learning that perhaps intense over-empathy is being mistaken as a lack of empathy in a number of Aspies seemed to hit the nail on the head: this was EXACTLY what I was trying to communicate in the office that day about my skewed emotional make-up, but sadly to no avail. Maybe some Aspies, if not most, don't care if other people are happy. But many Aspergians assert that this oversimplification does not accurately describe all people with Asperger’s, and empathetic Aspies like activist/artist Alex Plank are clearly frustrated with not being heard--or, like myself and many Aspergian females, are not being diagnosed at all. 

My going in for the evaluation in the first place was based not only on my own feelings, but also based on the opinions of my parents, my sister, and my life partner. (Subsequent research has lead me to believe that my aforementioned loved ones are themselves undiagnosed Aspergians, hence the surprising closeness with my family.) One month before the evaluation, I had been referred to the neurologist by my physician, who “would not be surprised” if I was found to have Asperger’s Syndrome  based on knowing me through a handful of appointments over seven months. My physician also suspected that if I had AS, it would likely be a “mild” case. Subsequently, my fear about being evaluated was that my desire to please and my aptitude for unconsciously performing would suggest an outgoing personality and belie the fact that said “personality” is, in fact, a lifelong front. Sadly, my fear was realized. 

For seven months now, that morning of August 29th, 2013 has been a frequent source of pain and regret. I spent the preceding weeks anticipating a definitive neurological confirmation that would allow me to approach my life in a positive new way. I was given a diagnosis based on an interview, leading me to believe that I had apparently misunderstood myself for my entire life. I wore a Michael Jackson t-shirt into the office that day, because it was his birthday, or “Michael Jackson Day”, as I call it. Michael has been a guiding influence on me since my birth, and only more so since his death, and going in I assumed he was on the autistic spectrum, too. When I was told Aspies don't care about the happiness of others, I realized he couldn’t be one either. He, too, was obsessed with other peoples' happiness, and like myself, his isolated and intensely creative life was fueled by this aim to please, from his early success as an ultra-precocious child through his troubled adulthood.

I emphasized where I was at in my life, and not without a great deal of shame. I was thirty one, living with my parents, and had become a recluse. I was too anxious to drive a car or see people, and thus incapable of interviewing for a job or shopping around for a suitable therapist. I was spending my days writing by myself and my nights watching movies by myself. It is an endless cycle of solitude that is usually only broken by extended video chats with my partner, whom I feel is a fellow "Aspie" and who is also presently living with his family in a nearly identical situation. I have since learned that my present life, as described to the neurologist, is sadly not an unfamiliar manifestation of undiagnosed Asperger's Syndrome. I am, like so many other undiagnosed adults, suffering the inevitable state of disconnection and uncertainty that comes with not knowing "what's wrong with me" in relation to the rest of the human race. If I had realized just how NOT alone I was, and just how RIGHT I was to be there that day, I would never have turned down the opportunity to undergo the very testing I thought I was showing up for in the first place. I went in for an evaluation based on traits that I saw in myself for years prior to the low point that my life had sunk to. I had no idea that day that said low point is further indication that I am not only correct in my assumption, but would have benefited immeasurably from having been diagnosed years earlier. And I would give anything to have known all of this last August. 

Prior to the evaluation, I was shocked and relieved to learn that rapidly flapping my hands while in a state of excitement brought about by intense inwardness--something which consistently attracted amusement throughout childhood before becoming a hidden, embarrassing trait ever since--is a defining trait of individuals on the autistic spectrum. But I did not know the word for this, “stimming”, until after my evaluation. I suspect that my use of grandiose hand gestures while explaining myself, rather than the stimming that I was attempting to explain, is what the neurologist reacted to. Several days later, my sister sent me a YouTube video of a young boy with Asperger’s whose mother asked him to demonstrate and explain his stimming. His behavior, his demeanor, and his description of his internal experience while stimming illustrated everything I had been attempting to communicate in the office and apparently could not. I saw myself in this child, as did my sister. Subsequently, the mortified reaction of everyone with whom I shared the doctor's "most of my gay friends use their hands a lot" statement preempted my own shock in being given such a stereotype-based response to such an incredibly common behavior of individuals on the autistic spectrum.

I would like to stress that I do not believe that the neurologist I spoke with was motivated by any homophobic inclination. With that said, I feel that my being gay was way too prominent an issue in this evaluation. Addressing my sexuality as “pretty obvious” early on and later writing off my stimming as behavior not unlike “most of my gay friends” was troubling, to me and to many of my loved ones. I have always struggled with social relationships, in predominantly gay as well as predominantly straight environments. Thus I do not agree with the theory that my problems today are directly rooted in my Catholic high school years, particularly not after fifteen subsequent years of being relentlessly open about my sexuality and in a decade-long relationship with another man. Two of my oldest friends, neither of whom I see very often but both of whom have been in my life since our youth, both separately joked that I had gone in for Asperger’s testing and been diagnosed as gay.

Based on the neurologist’s facial expressions and body language, I interpreted skepticism, condescension, and general irritation. I took the neurologist's "so what brings you here today?" as an implication that this was an audition as much as an evaluation. I proceeded accordingly, answering the questions and reading the signs sent by someone who struck me as going down a checklist rather than exhibiting concern for what I was saying and where it was coming from. Throughout the evaluation, I felt that the neurologist was looking at me as though I was looking at Asperger's as a scapegoat for my neurosis. I may very well have been correct in this assumption. Or I may very well have entirely misread the non-verbal cues before me. If indeed I completely misread the neurologist, then I feel all the more convinced that I have Asperger's. But regardless of the accuracy of my interpretation, by the time the forty minutes was up, I felt browbeaten and stripped of any sense of self beyond being gay and seemingly “amiable”. I also felt like such a neurotic stereotype that I turned down the tests I had wanted to have done so as to avoid further embarrassing myself in the eyes of the neurologist. 

I know that I have Asperger’s Syndrome. This is based not only on the overwhelming extent to which I can personally identify with the experiences of diagnosed individuals, but also based on the observations and memories of people close to me whom I have knowingly or unknowingly revealed my true self to in the years between my being an ahead-of-his-years child and a what-went-wrong-with-him adult. I also know that my evaluation had a catastrophic effect on my self-esteem. I feel that a big part of my reaction in this regard was based on the fact that the evaluation seemed bound to end in dismissal from the get-go. That such focus would be placed on my sexuality suggests that perhaps my feigned demeanor had a bigger influence on my diagnosis than did my honest answers to the questions I was asked. Since that day, I have struggled to feel like myself again. But thanks to incredible blogs like SeventhVoice, communities like Alex Plank's WrongPlanet, and activists/authors like Temple Grandin, Maxine Aston, and John Elder Robison, the voices of people whose life experiences I most relate to are leading me out of the dark.

Up to now, this blog has primarily been a platform for me to worship my favorite stars, rave about my favorite movies, celebrate my favorite pop culture anniversaries, and generally indulge in my perceived narcissism--all indicators of Asperger's, I might add! Thus, you may rightfully be asking why I would suddenly feel the need to discuss extremely personal details about my mental health. And that brings me to the questions I’ve been asking myself in the days leading up to writing this post. Is it not possible that cultural stereotypes of gay men as high-strung and idol-obsessed has permeated science and medicine, and to such an extent that autism is being confused with homosexuality? Is it not possible that in the seven months since I accepted my diagnosis that numerous other LGBTQ people have accepted similar diagnoses, putting aside their self-understanding in favor of an expert opinion? And, more importantly, is it possible that doing so has lead to the same depression, anxiety, and overwhelming self-doubt that has swallowed up the last seven months of my own life? 

I have only myself to blame for letting anxiety and self-doubt hold me back from giving a “Yes” answer when offered the testing I so wanted. And so I blamed only myself for the last seven months. Now, I anxiously await the opportunity to finally undergo neurocognitive testing in July. I could not be more excited about Summer 2014, and I pray it provides the assurance and optimism I sought out in Summer 2013. In the meantime, I will fight to believe in MY understanding of myself, even if it means fighting against the real or perceived skepticism of others. I stand alongside everyone waging a war against such doubt, and will keep my comrades up to date through future posts.

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