Bosun117, a member on WrongPlanet.com, contributed their AS story. Thank you for the story and I hope that things are alright for you now. I'm sorry for all of the difficulties you've had and hope that things will improve. It's not wrong being different and some people need to start to recognize that. Good luck with everything x
"I was diagnosed with Asperger's Syndrome back in my sophomore year of high school, when I was about 16. Even before then, I'd long suspected that something made unique from my peers. I'd struggled for a long time with judging proximity, tending to stare, and speaking softly, which sometimes got me into trouble (unintentionally) with my peers, particularly with members of the opposite sex. Whenever I wanted to talk to a girl that I had a interest in, I'd freeze up with terror, looking extremely awkward in the process. This, I thought, wasn't what it should be. Turns out I was right.
My struggles continued in college, when I entered Mass Maritime. In addition to issues judging proximity and speaking in a soft voice, my Aspergers caused me to be a reserved, cautious individual. This actually worked very well during my freshman (4/C) year, as it helped me stay out of the spotlight and, therefore, out of trouble. Unfortunately, this worked against me during my sophomore (3/C) year. In the spring semester of sophomore year, 3/C cadets are given the option of applying for Squad Leader positions. I applied, went through the whole program, and then ultimately wound up being DENIED the position that I'd applied for months earlier. When I asked my Company's XO why I'd been turned down, she mentioned how I was unpopular with the female cadets in the company for my tendency to stare, stand too close, and say too little (all of which fit the popular description of a "creep"), and that incoming cadets (the new freshman) might end up feeling the same way. Then I dropped the bomb on her that I had Asperger syndrome, and that all the reasons for which the girls hated me stemmed from it."
To this day, I remain without a formal leadership position within the Regiment of Cadets.
Monday, 11 July 2011
bewarethebob's story
A short story from another WrongPlanet member which might help you understand parts of what it's like to have AS. Thank you bewarethebob and hopefully things are alright for you now.
"I was diagnosed with AS when i was about 7 or 8. At the time, i didnt really understand or care what that meant, people always called me "crazy" and i would use that as a reason to do things i wanted to do. because i was crazy. I am currently 20, living in san diego, training as an conceptual designer. Generally, my AS has always been a mixed blessing. I have a hard time saying what i want, being confident, or sometimes communicating with others. However, i have always had a wild imagination, and that has helped me grow as an artist.
It has always been a mild case, which sometimes, is even more of an issue imo. because then people expect one thing from you, and if or when they find out about you having AS, will leave you."
"I was diagnosed with AS when i was about 7 or 8. At the time, i didnt really understand or care what that meant, people always called me "crazy" and i would use that as a reason to do things i wanted to do. because i was crazy. I am currently 20, living in san diego, training as an conceptual designer. Generally, my AS has always been a mixed blessing. I have a hard time saying what i want, being confident, or sometimes communicating with others. However, i have always had a wild imagination, and that has helped me grow as an artist.
It has always been a mild case, which sometimes, is even more of an issue imo. because then people expect one thing from you, and if or when they find out about you having AS, will leave you."
Sunday, 10 July 2011
FractalCurves' Story
This is FractalCurves' Story from her blog: http://fractalcurves.livejournal.com/27475.html She gave me permission to post her story here. It's worth reading as it's informative and really truthful. Thank you, FractalCurves!
"My Journey
For 18 years of my life, I was a quiet, shy, and withdrawn person. I did not know myself. I did not know what I wanted. I went through life blindly. I followed the rules and was afraid to make a move outside of these rules. Something was always missing and I did not know what it was. One thing I knew was that I wanted to succeed, but something in my mind told me that the form of success I wanted was unreachable. My own passions conflicted with my vision of success, and I had no clue how to bring the two together. Most of my interests have revolved around languages – Ukranian, French, Chinese. However, after trying to fit in socially and failing countless times, I have began to research nerd/geek culture and tried to take on their interests, which are commonly recognized as math, sciences and computers. Consequently, I tried to tear myself apart from my language interests and concentrate on the stereotypically nerdy interests. I desperately wanted to find an identity; also, I found myself attracted to these nerdy interests due to their rule-bound nature. But, for some reason, I happen to be gifted at more creative facets; writing and, to a lesser extent, visual art and music have always been my fortes. Since my parents have drilled into me that going into these creative professions will not bring me success and I will just end up being a starving artist, I have tried to move myself away from these things as much as possible. I still have, however, continued to write as much as I could, because writing more would help me improve my quality of writing, which would help me do well in school. Thus, writing is my only talent that I saw as being beneficial for me in the future.
I always took on people’s identities. I wanted to become different people because I never knew who I really was. I’ve constantly felt the need to merge into someone else’s identity around other people because I wanted to gauge people’s reactions to me through my knowledge of how other people have reacted to people who had specific characteristics. Since I could not properly pick up how people reacted to each other in real life, I could only learn about them by reading books about teenagers. Since books contained only very stereotypical portrayals of people, I wanted to become a stereotype myself to make people’s reactions to me more predictable. Now, I realize that I was nothing like the girls I’ve read about from these books, no matter how hard I’ve tried to dress and behave in that specific manner. I wish I knew about myself from the start so that I could have managed my life much better, without having other people who barely knew me direct my life. Including my parents… Who still barely know me.
Perhaps I could have ended up being a talented musician had I gone into music, or a talented visual artist had I gone into art. My writing talent was not that great in the beginning. Right now, my music and visual art talents have faded. After having been offered a bite of mainstream education in these two domains, I have grown to despise them. I have not painted or played piano for years, but I still cannot live without writing. I cannot express myself verbally to even a nearly equal extent as I can express myself in writing.
I still wonder why I have ever tried to fit in. Perhaps I just forgot how wonderful the world of books and imagination can be. Perhaps it is the result of demands of teamwork and cooperation that schooling put on me. I wanted to have more control over what was going on around me. When I saw other kids telling more to each other than they ever have to me, I wanted to change myself and be more like them so that I could be more in tune with my surroundings. It never worked, in addition to the rowdiness of social situations exhausting me to the extent where I just wanted to hide. So I did, skipping a month of my grade 8 school year. I have then read How to Make Friends and Influence People, a book by several of the rules of which I still abide today. Right after having read the book, I have started applying some of its rules way too excessively. For example, the book says that people like it when you mimic them in something. I then actually openly told one girl in my Grade 10 science class in my yearbook comment for her that she has amazing social skills and I would like to be like her. She just laughed at it, and I felt horrible. Of course, I was hoping that she could accept me into her social circle (she was very popular) but she never did. Much later, when I have finally have gathered the courage to take the fact that I have Asperger’s seriously, I decided to join a social skills group at a local autism organization. That was it… I was going to finally learn how to be able to fit in and to be social. However, after completing it, I have realized that the social world is much more complex than I’ve ever taken it to be.
Especially during the past year, my interest in self-advocacy and autism has developed to the point where it has become my way of existing. When I am torn away from it, even for a short while, I begin to feel like I am suffocating. My speaking ability begins to falter and I can no longer remember the meanings of things, as well as losing other abilites I possess which were not natural for me to begin with. I may come across as someone very different compared to 2 years ago, 1 year ago, or even several months ago. Perhaps that is due to me having developed more fluent speech with practice. I don’t try to fit in anymore, though, in the least, because everyone around me knows that I have ASD and expects me to act like me, not like a fake person. Despite this, I still struggle with self-identity. I am changeable, like any other human being; my moods change, the structure of my life changes, my interests may slightly change over time. While that is natural, it makes it difficult for me to try to categorize some of my characteristics in order to make sense of them. I have had a fleeting interest in the Myers-Briggs type indicator less than two years ago, which has consequently led me to question whether I am an introvert or an extrovert. I have since then discovered an intricate interconnection between autism and introversion, which made me question the validity of applying the Myers-Briggs to people on the spectrum in general.
My life is probably the biggest paradox. On one hand, I am perhaps one of the least socially skilled people you would ever meet. Put me with a group of average people and I will most likely shut down, not being able to utter a single word. With some people, though, I have the ability to become extremely talkative. If only I knew how to take that talkativeness and employ it with the groups of people around whom I shut down, I would be much happier. But I still haven’t figured out what has sparked some of the best conversations I have ever had. Somehow, they just happen and when they do, I get lost in them without any awareness of the passage of time. I savour these moments just as much as I savour quality time spent alone writing or reading. That is when people call me very social and very articulate. In these situations, I transform, becoming a different person who is almost… normal. On other words, people don’t recognize anything overly strange about me. That’s what I mean by normal.
Most of the time, though, I am a wreck. I aspire to be perfect, to make the needs of every situation met, to express myself as well as I feasibly can. All my meltdowns, all my struggles, all my mistakes are to be kept to myself as much as possible. Because, most of the time, there is only one right way, while there are hundreds of wrong ways. This means that I can predict the outcome of a situation that is successful with much greater certainty than a situation that is unsuccessful. The most clear example of that which I can think of right now is schooling and career.
As a high school student, you:
What happens next? If:
1)
- You will be able to get into any/almost any university you can apply to
- You may get a paid scholarship for a university
- You may get awards for one or more subjects
- If something happens to you and you miss an assignment, you will not fail a course and your mark in that course will at least remain decent
- You can at least guarantee that the teachers will have a better disposition toward you because they know that you are dedicated to your work
Losses: none
2)
- You may be accepted to some universities
- You may have to go to college instead
- You may fail a course if something happens to you and you miss an assignment
- The teachers may treat you okay, but they may also treat you badly for whatever reason (eg. they are not satisfied because you often cannot process what is being said in class)
- You may get some scholarship
Losses: Not getting into the university you have dreamed of yourself getting into, possibly going to college and getting a lower-tier job
3)
- You may be accepted into a college
- You may find a job
- You may try finding self-employment, but that may not work out either in providing you with sufficient income
- You may have to live with your parents/relatives for the rest of your life and you don’t know when your parents/relatives might pass away; lack of independence creates a cloud of uncertainty hanging over your life
Losses: Anything, including losing your life if you end up starving on the streets.
As you can see, there is MUCH more uncertainty that comes with NOT being successful than there is with being successful. That is why I have always taken my education seriously.
I might continue this later… Will stop for now.
I have written this just to provide you with more insight into who I am. Writing things like this also helps me clarify my own thoughts. I hope this might help someone else who is having difficulty figuring themselves out. From my experience, most people are clueless about what they want, not understanding why they are doing certain things that bounce back to them and hurt them in the long run."
"My Journey
For 18 years of my life, I was a quiet, shy, and withdrawn person. I did not know myself. I did not know what I wanted. I went through life blindly. I followed the rules and was afraid to make a move outside of these rules. Something was always missing and I did not know what it was. One thing I knew was that I wanted to succeed, but something in my mind told me that the form of success I wanted was unreachable. My own passions conflicted with my vision of success, and I had no clue how to bring the two together. Most of my interests have revolved around languages – Ukranian, French, Chinese. However, after trying to fit in socially and failing countless times, I have began to research nerd/geek culture and tried to take on their interests, which are commonly recognized as math, sciences and computers. Consequently, I tried to tear myself apart from my language interests and concentrate on the stereotypically nerdy interests. I desperately wanted to find an identity; also, I found myself attracted to these nerdy interests due to their rule-bound nature. But, for some reason, I happen to be gifted at more creative facets; writing and, to a lesser extent, visual art and music have always been my fortes. Since my parents have drilled into me that going into these creative professions will not bring me success and I will just end up being a starving artist, I have tried to move myself away from these things as much as possible. I still have, however, continued to write as much as I could, because writing more would help me improve my quality of writing, which would help me do well in school. Thus, writing is my only talent that I saw as being beneficial for me in the future.
I always took on people’s identities. I wanted to become different people because I never knew who I really was. I’ve constantly felt the need to merge into someone else’s identity around other people because I wanted to gauge people’s reactions to me through my knowledge of how other people have reacted to people who had specific characteristics. Since I could not properly pick up how people reacted to each other in real life, I could only learn about them by reading books about teenagers. Since books contained only very stereotypical portrayals of people, I wanted to become a stereotype myself to make people’s reactions to me more predictable. Now, I realize that I was nothing like the girls I’ve read about from these books, no matter how hard I’ve tried to dress and behave in that specific manner. I wish I knew about myself from the start so that I could have managed my life much better, without having other people who barely knew me direct my life. Including my parents… Who still barely know me.
Perhaps I could have ended up being a talented musician had I gone into music, or a talented visual artist had I gone into art. My writing talent was not that great in the beginning. Right now, my music and visual art talents have faded. After having been offered a bite of mainstream education in these two domains, I have grown to despise them. I have not painted or played piano for years, but I still cannot live without writing. I cannot express myself verbally to even a nearly equal extent as I can express myself in writing.
I still wonder why I have ever tried to fit in. Perhaps I just forgot how wonderful the world of books and imagination can be. Perhaps it is the result of demands of teamwork and cooperation that schooling put on me. I wanted to have more control over what was going on around me. When I saw other kids telling more to each other than they ever have to me, I wanted to change myself and be more like them so that I could be more in tune with my surroundings. It never worked, in addition to the rowdiness of social situations exhausting me to the extent where I just wanted to hide. So I did, skipping a month of my grade 8 school year. I have then read How to Make Friends and Influence People, a book by several of the rules of which I still abide today. Right after having read the book, I have started applying some of its rules way too excessively. For example, the book says that people like it when you mimic them in something. I then actually openly told one girl in my Grade 10 science class in my yearbook comment for her that she has amazing social skills and I would like to be like her. She just laughed at it, and I felt horrible. Of course, I was hoping that she could accept me into her social circle (she was very popular) but she never did. Much later, when I have finally have gathered the courage to take the fact that I have Asperger’s seriously, I decided to join a social skills group at a local autism organization. That was it… I was going to finally learn how to be able to fit in and to be social. However, after completing it, I have realized that the social world is much more complex than I’ve ever taken it to be.
Especially during the past year, my interest in self-advocacy and autism has developed to the point where it has become my way of existing. When I am torn away from it, even for a short while, I begin to feel like I am suffocating. My speaking ability begins to falter and I can no longer remember the meanings of things, as well as losing other abilites I possess which were not natural for me to begin with. I may come across as someone very different compared to 2 years ago, 1 year ago, or even several months ago. Perhaps that is due to me having developed more fluent speech with practice. I don’t try to fit in anymore, though, in the least, because everyone around me knows that I have ASD and expects me to act like me, not like a fake person. Despite this, I still struggle with self-identity. I am changeable, like any other human being; my moods change, the structure of my life changes, my interests may slightly change over time. While that is natural, it makes it difficult for me to try to categorize some of my characteristics in order to make sense of them. I have had a fleeting interest in the Myers-Briggs type indicator less than two years ago, which has consequently led me to question whether I am an introvert or an extrovert. I have since then discovered an intricate interconnection between autism and introversion, which made me question the validity of applying the Myers-Briggs to people on the spectrum in general.
My life is probably the biggest paradox. On one hand, I am perhaps one of the least socially skilled people you would ever meet. Put me with a group of average people and I will most likely shut down, not being able to utter a single word. With some people, though, I have the ability to become extremely talkative. If only I knew how to take that talkativeness and employ it with the groups of people around whom I shut down, I would be much happier. But I still haven’t figured out what has sparked some of the best conversations I have ever had. Somehow, they just happen and when they do, I get lost in them without any awareness of the passage of time. I savour these moments just as much as I savour quality time spent alone writing or reading. That is when people call me very social and very articulate. In these situations, I transform, becoming a different person who is almost… normal. On other words, people don’t recognize anything overly strange about me. That’s what I mean by normal.
Most of the time, though, I am a wreck. I aspire to be perfect, to make the needs of every situation met, to express myself as well as I feasibly can. All my meltdowns, all my struggles, all my mistakes are to be kept to myself as much as possible. Because, most of the time, there is only one right way, while there are hundreds of wrong ways. This means that I can predict the outcome of a situation that is successful with much greater certainty than a situation that is unsuccessful. The most clear example of that which I can think of right now is schooling and career.
As a high school student, you:
1) Can either work hard and get very high grades in school
2) Can do average in school
3) Can fail and drop out of school
What happens next? If:
1)
- You will be able to get into any/almost any university you can apply to
- You may get a paid scholarship for a university
- You may get awards for one or more subjects
- If something happens to you and you miss an assignment, you will not fail a course and your mark in that course will at least remain decent
- You can at least guarantee that the teachers will have a better disposition toward you because they know that you are dedicated to your work
Losses: none
2)
- You may be accepted to some universities
- You may have to go to college instead
- You may fail a course if something happens to you and you miss an assignment
- The teachers may treat you okay, but they may also treat you badly for whatever reason (eg. they are not satisfied because you often cannot process what is being said in class)
- You may get some scholarship
Losses: Not getting into the university you have dreamed of yourself getting into, possibly going to college and getting a lower-tier job
3)
- You may be accepted into a college
- You may find a job
- You may try finding self-employment, but that may not work out either in providing you with sufficient income
- You may have to live with your parents/relatives for the rest of your life and you don’t know when your parents/relatives might pass away; lack of independence creates a cloud of uncertainty hanging over your life
Losses: Anything, including losing your life if you end up starving on the streets.
As you can see, there is MUCH more uncertainty that comes with NOT being successful than there is with being successful. That is why I have always taken my education seriously.
I might continue this later… Will stop for now.
I have written this just to provide you with more insight into who I am. Writing things like this also helps me clarify my own thoughts. I hope this might help someone else who is having difficulty figuring themselves out. From my experience, most people are clueless about what they want, not understanding why they are doing certain things that bounce back to them and hurt them in the long run."
Kingtrey's AS Story
A member from WrongPlanet.net gave me permission to post their story. Here's their inspirational story from the point of view of somebody diagnosed with AS. Thank you for the story, Kingtrey!
"I was diagnosed with AS in early childhood. In elementry school I was always known as the smart but eccentric kid but socializing was fairly easy because I was in class with the same group of people through 5th grade. My life took a very dark turn when I went to middle school, I was constantly bullied for three full years by pretty much everyone, people I thought were my friends, my cousins, and just random people. By 8th grade I pretty much withdrew from any kind of social interactions and remained afraid to connect with others during the first two years of high school. But that changed at the end of my sophomore year when I was diagnosed with a chronic illness. I reflected on how shy I had been and vowed to change it. When I came back to school, I realized I had very little idea how to interact with others so I just learned as I went. I think doing so well in my US history class helped others accept me more, history is my special interest. All of the hard work in 11th grade paid off. My senior year was incredible, I joined several student organizations such as the academic challenge team where I put my knowledge of history to use, I joined the fellowship of Christian Athletes and gave a speech on how important it is to accept those who are different from you, and once I learned how to socialize, I was voted by my senior class as most friendly. Now Im 18, Im about to go to the University of North Carolina at Greensboro and I hope to become a history professor. Unfortunatly I have not had a girlfriend yet, that is probably my biggest failure in high school but other then that my life has been great in the past couple of years."
"I was diagnosed with AS in early childhood. In elementry school I was always known as the smart but eccentric kid but socializing was fairly easy because I was in class with the same group of people through 5th grade. My life took a very dark turn when I went to middle school, I was constantly bullied for three full years by pretty much everyone, people I thought were my friends, my cousins, and just random people. By 8th grade I pretty much withdrew from any kind of social interactions and remained afraid to connect with others during the first two years of high school. But that changed at the end of my sophomore year when I was diagnosed with a chronic illness. I reflected on how shy I had been and vowed to change it. When I came back to school, I realized I had very little idea how to interact with others so I just learned as I went. I think doing so well in my US history class helped others accept me more, history is my special interest. All of the hard work in 11th grade paid off. My senior year was incredible, I joined several student organizations such as the academic challenge team where I put my knowledge of history to use, I joined the fellowship of Christian Athletes and gave a speech on how important it is to accept those who are different from you, and once I learned how to socialize, I was voted by my senior class as most friendly. Now Im 18, Im about to go to the University of North Carolina at Greensboro and I hope to become a history professor. Unfortunatly I have not had a girlfriend yet, that is probably my biggest failure in high school but other then that my life has been great in the past couple of years."
Notes on the Blog
This blog has just started but don't worry, there's lots more to come. I'll be posting lots more links and information as well as personal experiences and opinions.
If you have any links/information you think I should post, please comment here or e-mail me as forestrose77@yahoo.co.uk
Likewise if you have any of your own experiences/ AS stories you'd like to see posted here :)
Thank you, stay safe xx
If you have any links/information you think I should post, please comment here or e-mail me as forestrose77@yahoo.co.uk
Likewise if you have any of your own experiences/ AS stories you'd like to see posted here :)
Thank you, stay safe xx
A Vanishing Diagnosis for Asperger's Syndrome
Source: http://www.nytimes.com/2009/11/03/health/03asperger.html?pagewanted=1
November 2nd 2009
"It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.
Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.
But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.
If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.
“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.
“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”
Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”
But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.
Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”
The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.
Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.
Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.
Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.
The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.
Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.
The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.
And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not."
It's a kind of old article but interesting. I've heard about the changes to the DSM-V and how there are plans to not include the diagnosis of Asperger's Syndrome. I am actually technically diagnosed with "Autistic Spectrum Disorder" but the person who diagnosed me said it was basically Asperger's Syndrome, which I use because it's a more fitting and specific diagnosis. It looks like it's not going to be around much longer, though- the DSM-V comes out in 2012/2013? I guess things won't change for me exactly, but I do have some thoughts on Asperger's not existing anymore.
In a way I do see the point of just having one diagnosis of ASD, but in another way having a more specific diagnosis, e.g. Asperger's Syndrome, can help find information on it. For instance there are lots of books you can read and websites you can visit to learn about it/yourself and find coping strategies. So if they do change the diagnosis, I hope that they also change the way they inform people about their diagnosis, and give them information about why the diagnosis was made, and perhaps some ways to cope, instead of just giving them the label and then sending them away. I'm aware that this doesn't always happen, but in my opinion it happens in way too many cases.
November 2nd 2009
"It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.
In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.
But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.
If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.
“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.
“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”
Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”
But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.
Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”
The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.
Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.
Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.
Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.
The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.
Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.
The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.
And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not."
It's a kind of old article but interesting. I've heard about the changes to the DSM-V and how there are plans to not include the diagnosis of Asperger's Syndrome. I am actually technically diagnosed with "Autistic Spectrum Disorder" but the person who diagnosed me said it was basically Asperger's Syndrome, which I use because it's a more fitting and specific diagnosis. It looks like it's not going to be around much longer, though- the DSM-V comes out in 2012/2013? I guess things won't change for me exactly, but I do have some thoughts on Asperger's not existing anymore.
In a way I do see the point of just having one diagnosis of ASD, but in another way having a more specific diagnosis, e.g. Asperger's Syndrome, can help find information on it. For instance there are lots of books you can read and websites you can visit to learn about it/yourself and find coping strategies. So if they do change the diagnosis, I hope that they also change the way they inform people about their diagnosis, and give them information about why the diagnosis was made, and perhaps some ways to cope, instead of just giving them the label and then sending them away. I'm aware that this doesn't always happen, but in my opinion it happens in way too many cases.
"When you see something like that it just clicks. You know it. It's Asperger's Syndrome."
For some reason, I had agreed to go to a summer holidays sports activities club. I must have been mad. I knew that I didn't like sports, that sports and me didn't mix. Yet I went anyway. I liked horse riding even if I was no good at it, I thought, and I wanted to go because of that. Maybe I would make friends.
My ten year old self didn't know very much about me and my difficulties, yet. I knew things went wrong, and I blamed myself for them sometimes but managed to pick myself right up. How silly of me, what a mistake. I suppose my attitude was in ways good: I can do this, I thought right until the last moment. But was I setting myself up for a fall?
I can't remember it so clearly. I need to ask somebody else to tell me what happened. It was alright. The horse-riding came first, and we were only led around because we were "beginners". I didn't speak to anybody.
Why? I wish I remembered. Was I afraid? Did I not know what to say? Did I just prefer being alone? I expect so.
Remembering things like this is like watching a small movie. Me as a smaller child, me standing in the corner. I had been told to stand in the corner a lot as a small child. It became automatic and I was convinced that I had to stand in the corner when I was doing something wrong.
Thankfully I have got over that now. Standing in the corner is silly.
The hallway was overwhelming. I didn't know anybody and it was so unfamiliar. All I knew was the bright lights, the echoing of people's voices as they shouted and the screeching of their trainers on the ground. I don't know what to do. I don't know anyone. They're all so competitive and I suddenly doubt my ability to do anything. I doubt my ability to even so much as exist.
So I don't.
A ten year old girl, tall but skinny, standing in the corner and backing away from everything else. Hunched into herself and arms folded, shutting off. Who said she was on this planet?
I don't really remember it, but my Mum describes it to me today. "When you see something like that it just clicks. You know it. It's Asperger's Syndrome."
Of course that's not what it's all about. It's just one drop of a thousand little droplets of rain, and of course everybody gets different ones.
My ten year old self didn't know very much about me and my difficulties, yet. I knew things went wrong, and I blamed myself for them sometimes but managed to pick myself right up. How silly of me, what a mistake. I suppose my attitude was in ways good: I can do this, I thought right until the last moment. But was I setting myself up for a fall?
I can't remember it so clearly. I need to ask somebody else to tell me what happened. It was alright. The horse-riding came first, and we were only led around because we were "beginners". I didn't speak to anybody.
Why? I wish I remembered. Was I afraid? Did I not know what to say? Did I just prefer being alone? I expect so.
Remembering things like this is like watching a small movie. Me as a smaller child, me standing in the corner. I had been told to stand in the corner a lot as a small child. It became automatic and I was convinced that I had to stand in the corner when I was doing something wrong.
Thankfully I have got over that now. Standing in the corner is silly.
The hallway was overwhelming. I didn't know anybody and it was so unfamiliar. All I knew was the bright lights, the echoing of people's voices as they shouted and the screeching of their trainers on the ground. I don't know what to do. I don't know anyone. They're all so competitive and I suddenly doubt my ability to do anything. I doubt my ability to even so much as exist.
So I don't.
A ten year old girl, tall but skinny, standing in the corner and backing away from everything else. Hunched into herself and arms folded, shutting off. Who said she was on this planet?
I don't really remember it, but my Mum describes it to me today. "When you see something like that it just clicks. You know it. It's Asperger's Syndrome."
Of course that's not what it's all about. It's just one drop of a thousand little droplets of rain, and of course everybody gets different ones.
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