A few weeks ago I was at my shrink and talking about how frustrated I was about certain things related to Asperger's, and a strong suspicion that I have a non-verbal learning disability. In fact, I thought the two were intrinsically linked.
My shrink told me that they weren't, and that I haven't even been diagnosed with Asperger's, and--
Wait, WHAT?
I told him that I sure as hell wasn't neurotypical, and that I was diagnosed anyway back in 2003.
He shook his head, and said something like, "A therapist saying that he agrees with your assessment is not a diagnosis. You need neuropsychiatric testing for that. I'm just floored that you never had that done."
"Yeah, well, nobody knew anything back then. In 2003, they gave me an MRI and an EEG. That was it. There was nothing else they could do."
He said that even though people didn't know what Asperger's was until very recently, neuropsychiatric testing has been around since the '80s. That's right, the 1980s! And not one person suggested I have it done, unless you count the psychological evaluation I had at age 8 at my school (but I don't think that qualifies). So this means that my boneheaded shrink that I went to from 1992-1995 didn't know to refer me for it; my very good shrink from 1998-1999 didn't know to refer me for it; and none of the other shrinks I've had-- bad and good-- suggested I have it done. Nobody! Not in suburban Pennsylvania, and not even in New York City!
My therapist does believe I'm on the autism spectrum, but I need neuropsychiatric testing to get an official diagnosis. And this would also screen for the NVLD I've been suspicious of for the past year; I've been suspicious because I've been taking web development classes and I'm always the last to pick up everything. Sometimes instructors and peers think it's a lack of attention to detail (ha! People, if anything, tell me I'm too hung up on details!) or that I'm distracted or whatever, but... there's something else going on. I can't even explain it. And when I've described to my shrink about what it's like for me to learn new non-verbal material, and how I do much better one-on-one, he said that what I've described is very typical of people with NVLD.
Yeah, so I have to look into getting DIAGNOSED after 13 YEARS of being sure that I've had Asperger's. If I don't have it, I don't know what it means. This really would warp reality as I know it.
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Sunday, November 13, 2016
Sunday, April 3, 2011
Are You SURE You Have Asperger's Syndrome?
Being the highest of the high-functioning on the autism spectrum is a double-edged sword. On one hand, it's great that in adulthood that my symptoms are sub-clinical and I can finally relax and not worry that every little thing I do is going to set people off due to a miscommunication. I make friends with ease and I am very personable. On the other hand, because of these skills that I now have, lots of people who I meet for the first time don't believe me when I say that I have Asperger's syndrome. Yes, it's true that I diagnosed myself initially before seeking confirmation from a therapist, but I'm not the type of person that sees one little trait that vaguely fits my personality and makes a diagnosis. It is true, sometimes people do that. "Oh, I'm fascinated with numbers. I must have Asperger's syndrome," someone might say, not thinking about the label that they're misapplying to themselves. But I'm not like that.
People who knew me from summer camp or from school, with whom I reunite on Facebook, often say this when I tell them I have Asperger's syndrome: "That explains a lot." And it does! People who I'm just getting to know today can't see that I have it because I've compensated for most of the problems that come with it. Just because they can't see the struggles and the pain I endured while trying to navigate the social world throughout the vast majority of my life (a lot of it was trial and error) does not mean that these things didn't happen. Asperger's syndrome is the only logical explanation for the social problems I had throughout my childhood and part of my adulthood. Some people become sub-clinical in adulthood (AS advocate Michael John Carley comes to mind-- I used to go to his support group and I never would have guessed he has AS). A child may have a dyslexia that makes reading a headache, but upon adulthood that same person may read with near total fluency. On the other hand, some dyslexic people rely on audiobooks in adulthood.
Like dyslexia, autism is a spectrum. And I think the highest functioning people have it the hardest growing up because they appear to be "normal." That is, "normal" kids who are stubborn, uncooperative, ill-mannered, rude, etc. When a child fits the stereotypical AS traits-- talking about trains, flapping hands, taking idiomatic expressions literally-- then people may see the AS more clearly and be more accommodating. Let's raise consciousness. For those of you who are the highest of the high-functioning, I'd like to hear from you.
Thursday, February 17, 2011
The Road to (Self-) Diagnosis
Growing up in a small, homogeneous town in Pennsylvania, it was excruciatingly clear that I was different. I knew long before I started experiencing chronic teasing in second grade (which continued through ninth grade), long before other kids nicknamed me "Space Cadet" and "Alien." I knew it long before I began to sense that my parents thought there was something wrong with me, long before teachers and parents began calling my parents with "concerns."
By fifth grade, I knew that I had ideas, perceptions, an imagination, and a sense of humor that often significantly deviated from what much of society expected. I also got inordinately obsessed with certain movies and television shows and I knew it was weird to do so. Like many people, I, too, thought that there was something wrong with me. I struggled to figure out why I was so different. But it was the early 1990s and I had never heard of the concept of someone's brain being hardwired differently, or even mental illness. In the '80s and '90s-- when I was growing up-- few people had.
My parents first brought me to a psychologist in the middle of my fifth grade year. Dr. Klein (not his real name) told my parents and me what amounted to, "I don't know what to tell you. I've never seen anything like this before." I stopped seeing him after three years because it was clear that he wasn't helping and, although I liked him as a person, was notorious for analyzing things that had no deep meaning.
The summer of 1998-- three years after I had last seen Dr. Klein-- was a major turning point in my life. The concept of people's brains being literally wired differently began to dawn on me, and it drastically influenced the way I understood myself as well as other people. I strongly suspected that my childhood and early adolescent obsessions with movies and television shows -- not to mention the obsessive crushes I found myself beginning to get as of late-- indicated Obsessive Compulsive Disorder (OCD).
Unfortunately, despite my epiphany about OCD, I struggled with emotional frustration and meltdowns as well as major setbacks in social interactions. My summer camp-- the only place I had ever felt like I truly could be myself-- was not going to hire me as a first-year counselor in the summer of '99. With no friends at school-- I just couldn't connect with anybody-- I had no one to turn to, no backup plan.
In the fall of 1998, for the first time in three years, I was back in a therapist's office. Dr. Fried (again, a pseudonym), was a much, much better therapist than Dr. Klein. After the first or second session, he spotted a common denominator in my personality. "You're a very intense person," he said. Indeed, I am! I experience life in general intensely: favorite movies, friendships, crushes, and worrying. Based primarily on the obsessive worrying, he agreed with my theory that I had OCD and diagnosed me with the condition. I only saw Dr. Fried for about six months-- college was just around the corner and I would be moving to Brooklyn, NY-- but he helped immensely. I moved to Brooklyn in an optimistic state of mind.
In my junior year of college, however, my problems began to resurface. I continued to have social problems, not so much with other students (I made some good friends), but with teachers. I was in art school and many of the teachers fit the stereotype of the temperamental, self-righteous, imbalanced, and just plain nasty artists. Despite the OCD label, which was initially empowering, I began to suspect that OCD didn't paint an entire picture. I knew, somehow, that it just wasn't quite it. There were so many things-- like my problems reading social cues-- that just didn't add up.
In 2002, towards the end of my junior year of college-- and one of the worst years of my life-- I came across an article in Time about autism. As far as I knew, autistic people were "those people who don't talk." But then I saw a short description of Asperger's syndrome (AS) in a side bar. Obsessive interests. Difficulty interpreting nonverbal social cues. Awkward motor skills. I ran some searches on the Internet for AS and found out more. Obsessive, obsessive, obsessive. Difficulty making and keeping friends. Experiences the world differently. Misinterprets situations. And so forth.
The pieces fell abruptly into place.
Over the next year, I bought a number of books on AS and essentially diagnosed myself; a psychiatrist confirmed my diagnosis in the spring of 2003. After years of poking around in the dark and only finding partial answers, a complete, coherent picture was finally formed. AS was added to the DSM in 1994, but the vast majority of professionals weren't aware of it until a little after the turn of the century.
At long last, I had an answer. How did I feel then? How do I feel now? As I said, 2002 was one of the worst years of my life. 2003 was the absolute worst. Whereas the discovery would have come as a relief in high school, a time when I was more optimistic despite my insecurities, I felt embittered and frightened. How could I possibly hold a job after graduating if I had this problem? Would I have to live in a group home or on SSI? Looking at my turbulent childhood and what looked like was going to be a difficult adulthood, I felt that nature had played a sick joke on me.
Things have changed since then, and I'm a happy, well-adjusted adult, am relieved to have the AS label, and I am able to interact socially as well as the next person. Most people are amazed when I tell them I have AS. And yes, I do have a job. I suppose part of me feels cheated because I suffered for much of my childhood and my early adulthood, just by the sheer accident of being born in 1980 instead of 1990. But I know I should look on the bright side-- at least I wasn't born in 1950. People didn't go to therapy in those days; many people thought it meant you were crazy and should be locked in a padded cell. Sometimes I wonder if that would have been my fate, with the emotional meltdowns that I had from experiencing a world that made little sense to me.
And while we're on that note, it's important for society to understand something important about AS-- it isn't a mental illness and there isn't necessarily anything psychologically wrong with the person who has it; his or her neurology is just different. What Aspies need is not to be cured anymore than a gay person needs to be turned straight. After all, if we cured AS, we would have no Albert Einsteins or Temple Grandins. Aspies-- like gays-- need understanding and support and to have their strengths nurtured, not their weaknesses emphasized. I feel privileged to at last be entering an era where this attitude is starting to become more prevalent.
By fifth grade, I knew that I had ideas, perceptions, an imagination, and a sense of humor that often significantly deviated from what much of society expected. I also got inordinately obsessed with certain movies and television shows and I knew it was weird to do so. Like many people, I, too, thought that there was something wrong with me. I struggled to figure out why I was so different. But it was the early 1990s and I had never heard of the concept of someone's brain being hardwired differently, or even mental illness. In the '80s and '90s-- when I was growing up-- few people had.
My parents first brought me to a psychologist in the middle of my fifth grade year. Dr. Klein (not his real name) told my parents and me what amounted to, "I don't know what to tell you. I've never seen anything like this before." I stopped seeing him after three years because it was clear that he wasn't helping and, although I liked him as a person, was notorious for analyzing things that had no deep meaning.
The summer of 1998-- three years after I had last seen Dr. Klein-- was a major turning point in my life. The concept of people's brains being literally wired differently began to dawn on me, and it drastically influenced the way I understood myself as well as other people. I strongly suspected that my childhood and early adolescent obsessions with movies and television shows -- not to mention the obsessive crushes I found myself beginning to get as of late-- indicated Obsessive Compulsive Disorder (OCD).
Unfortunately, despite my epiphany about OCD, I struggled with emotional frustration and meltdowns as well as major setbacks in social interactions. My summer camp-- the only place I had ever felt like I truly could be myself-- was not going to hire me as a first-year counselor in the summer of '99. With no friends at school-- I just couldn't connect with anybody-- I had no one to turn to, no backup plan.
In the fall of 1998, for the first time in three years, I was back in a therapist's office. Dr. Fried (again, a pseudonym), was a much, much better therapist than Dr. Klein. After the first or second session, he spotted a common denominator in my personality. "You're a very intense person," he said. Indeed, I am! I experience life in general intensely: favorite movies, friendships, crushes, and worrying. Based primarily on the obsessive worrying, he agreed with my theory that I had OCD and diagnosed me with the condition. I only saw Dr. Fried for about six months-- college was just around the corner and I would be moving to Brooklyn, NY-- but he helped immensely. I moved to Brooklyn in an optimistic state of mind.
In my junior year of college, however, my problems began to resurface. I continued to have social problems, not so much with other students (I made some good friends), but with teachers. I was in art school and many of the teachers fit the stereotype of the temperamental, self-righteous, imbalanced, and just plain nasty artists. Despite the OCD label, which was initially empowering, I began to suspect that OCD didn't paint an entire picture. I knew, somehow, that it just wasn't quite it. There were so many things-- like my problems reading social cues-- that just didn't add up.
In 2002, towards the end of my junior year of college-- and one of the worst years of my life-- I came across an article in Time about autism. As far as I knew, autistic people were "those people who don't talk." But then I saw a short description of Asperger's syndrome (AS) in a side bar. Obsessive interests. Difficulty interpreting nonverbal social cues. Awkward motor skills. I ran some searches on the Internet for AS and found out more. Obsessive, obsessive, obsessive. Difficulty making and keeping friends. Experiences the world differently. Misinterprets situations. And so forth.
The pieces fell abruptly into place.
Over the next year, I bought a number of books on AS and essentially diagnosed myself; a psychiatrist confirmed my diagnosis in the spring of 2003. After years of poking around in the dark and only finding partial answers, a complete, coherent picture was finally formed. AS was added to the DSM in 1994, but the vast majority of professionals weren't aware of it until a little after the turn of the century.
At long last, I had an answer. How did I feel then? How do I feel now? As I said, 2002 was one of the worst years of my life. 2003 was the absolute worst. Whereas the discovery would have come as a relief in high school, a time when I was more optimistic despite my insecurities, I felt embittered and frightened. How could I possibly hold a job after graduating if I had this problem? Would I have to live in a group home or on SSI? Looking at my turbulent childhood and what looked like was going to be a difficult adulthood, I felt that nature had played a sick joke on me.
Things have changed since then, and I'm a happy, well-adjusted adult, am relieved to have the AS label, and I am able to interact socially as well as the next person. Most people are amazed when I tell them I have AS. And yes, I do have a job. I suppose part of me feels cheated because I suffered for much of my childhood and my early adulthood, just by the sheer accident of being born in 1980 instead of 1990. But I know I should look on the bright side-- at least I wasn't born in 1950. People didn't go to therapy in those days; many people thought it meant you were crazy and should be locked in a padded cell. Sometimes I wonder if that would have been my fate, with the emotional meltdowns that I had from experiencing a world that made little sense to me.
And while we're on that note, it's important for society to understand something important about AS-- it isn't a mental illness and there isn't necessarily anything psychologically wrong with the person who has it; his or her neurology is just different. What Aspies need is not to be cured anymore than a gay person needs to be turned straight. After all, if we cured AS, we would have no Albert Einsteins or Temple Grandins. Aspies-- like gays-- need understanding and support and to have their strengths nurtured, not their weaknesses emphasized. I feel privileged to at last be entering an era where this attitude is starting to become more prevalent.
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