I've been wondering about these things for a long time, and was wondering if anyone here could relate.
I was not really a particularly unusual child. I preferred to play alone and usually did, but I usually had one or two friends. My mother says that I always seemed relatively disinterested in other people and didn't seem to care much about having friends. All of my stimming was fairly subtle, and my interests didn't seem unusual. I just read a lot, and sometimes like to re-read a book. (Unlike many aspies, however, I did not learn to read until I was around five or six.) I was a picky eater and had mild tactile sensitivities. One problem which I've always had was having a hard time regulating emotions. I've always become angry/upset/frustrated pretty easily. I don't know what triggered these episodes when I was younger, but today they're often instigated by things not going quite as expected or as planned. However, I was never obsessively into elaborate routines or compulsions; I just don't like it when things go differently from how I plan and expect. I tolerated most sensory input pretty well, though occasionally something really terrifying (like going to the dentist or Chuck E. Cheese) would push me over the edge.
Around the age of ten, social things became more difficult for me and my meltdowns at school became worse/more frequent. At this time I also started having more obvious special interests and my family got a computer, which I spent a huge amount of time on. After a few years of counseling, however, I had fewer problems and more friends. Then my family moved across the country before I started high school (age 14), and things just got progressively worse from there. I didn't know how to make friends, became very withdrawn, and slacked off on classes which I thought were boring or a waste of time. I spent more time than ever on the computer (at the time I was very obsessed with Harry Potter fandom) and resisted my parents' attempts to make me "more involved" or have a social life. I was diagnosed with depression and AD/HD. I began taking medication for ADD and became involved with the school newspaper since I've always liked writing. My grades improved and so did my depression. My mother, however, is a social worker and wasn't convinced that the ADD diagnosis was correct. She did some research on her own and began thinking I might have (mild) AS. I went to a psychologist who specializes in AS, and she diagnosed me based off of a few meetings, talking to my parents, and forms filled out by my parents and one of my high school teachers. I was diagnosed when I was 17, right before I left for college.
The problem is that that was more than two years ago, and I still have trouble believing the diagnosis. Sure, I'm willing to admit that I appear very much like a mild aspie today--social difficulties, few if any friends, intense interests, stimming, clumsiness, can't drive, some sleep problems, picky eating, meltdowns, rigid thinking, likes to wear the same clothes everyday, etc. But I can't quite get around the fact that I was so "almost-normal" as a child, and it doesn't quite make sense to me. I intellectually realize that AS/autism is a spectrum and that there are no clear dividing lines, but that's hard for me to accept and deal with. When I mentioned this to both the psychologist who diagnosed me and my mother, they both said that my apparent inability to deal with "the gray area" was itself a sign of AS. I just keep wishing that there were some definitive way I could know I have it, but I know I'm too mild and "subtle" for that to be case. I'm diagnosed, my parents are sure I have it, my aspie boyfriend is sure I have it, his parents are sure I have it, even my mom's friend who has a severely aspie son thinks I have it. I think so a lot of the time too, but sometimes I don't understand why everyone else is seemingly so sure about it. The thought that I don't have it is terrifying to me, because then I'm just hopelessly shy and emotionally unstable. I've thought about this A LOT and AS does seem to make the most sense out of any neurological/mental condition, but sometimes I can't quite get around the things which don't fit. At this point I should probably mention that I've been perseverating on autism/AS for the past year and a half. My boyfriend thinks my inability to accept this entirely is just more of my immense insecurity problem, and while I think there's something to that, I can't help but also think that it's because I was not a stereotypically AS child. I have promised him that I will try to be more secure about this and other things, but it's hard sometimes. Has anyone experienced similar problem with diagnostic doubt and second-guessing? Am I right to question misdiagnosis, or am I simply being too rigid and thinking too much in black and white? Any and all input is appreciated. Thanks for taking the time to listen to my ramblings.
I also had a minimal brain dysfunction diagnosis and a hyperactivity diagnosis (You would call that ADHD). Later a social worker (professor, my boss in Marshall University Research and Economic Development Center) encouraged me to request a psychological assessment in the Psychology Clinic. It came back Asperger (a matter of weeks before I got my Master's). Actually they repeated the test a year later (after my Master's). Asperger again.
My first big job wasn't working out, trouble concentrating, (I talked ADHD over with my psychiatrist but the truth was it was also a hostile work environment and I was motivated to work someplace else). The State of Maryland ran a psychological assessment.
Asperger again.
Mega trouble trying to use the Master's in applied social and evaluation research around Washington. You may say Asperger, some may even say obesity, the state of Maryland said give up and get 22 credits in computer programming at taxpayer expense and I did. I've been working 8.5 years in Web design.
Does the autistic label bother you? I know my fellow grad student had to carefully explain the difference between classic autism (Kanner) and Asperger (pretty much like, if you had classic autism and you had an intelligence deficit, you wouldn't be here..... but you are here.... Asperger has no intelligence or academic deficit, it only hurts nonverbal communication and social conformity, social situational awareness and all that)
Sometimes I think my Asperger doesn't make sense either.
I drive.
I make friends rather easily. If you don't monopolize the conversation, if you sustain the conversation, if you are generous and really want to care, often people accept that as friendship. It is a set of costs and benefits I and they agree on.
Girlfriend-- I can't get the women to agree on that. From what I have read over the years, there is an expectation of an exclusive one-one relationship, love and at some point, sex, and probably a family. I believe I have a message of love to say to someone but I do not know who. So far I have not found one to listen.
When deciding whether or not to use a word like aspergers, as long as you meet the criteria to some extent, I've always thought that it's much more important how useful the label is to you than any sort of clinical definites.
For example, does the term aspergers help you understand how your mind works? Does it help you find people similar to yourself? Does it help explain your behaviors to other people? These are all good reasons to adopt the term.
If aspergers doesn't help you with any of the above, it may not be worth having the label.
This is entirely separate from other peoples opinions - if you don't want to adopt the label, then don't let others push you into doing so. If you do, then don't let the fact that it's a "label" push you away from it.
In this case, the question to ask yourself is this: Do I wish to self-identify as having aspergers?
To answer some questions...
-Does the autism label bother me? It did at first, but now it doesn't at all, really. I just sometimes feel like a fraud using it because I'm so mild compared to most others. But when I told my boyfriend that I feel like my AS is too mild to be worth mentioning to others, he said "you really aren't. Trust me." Still, I read posts on the Internet from those obviously more affected me, watch the documentary "Today's Man", or meet with an aspie acquaintance who's way more obvious than me, and I think "I can't think of myself as having Asperger's, because I'm not like that and saying that diminishes others' difficulties." I know that sounds a bit absurd, but it's how I think. It's not that I'm embarrassed to identify as autistic/aspie, it's that I don't want to minimize autism/Asperger's by doing so.
-Does the term asperger's explain how your mind works? To some extent, yes. There are still some things I'm trying to figure out, like whether my problems with emotional regulation are simply part of Asperger's (as my mother and psychologist try to tell me), or whether it's a related mental illness (like my boyfriend thinks), or if it's just completely different (as one psychiatrist suggested.) As I said in my post, I'm not stereotypical, so a lot of Asperger's material is somewhat puzzling to me. I can't at all relate to feeling like a robot, for example. I also was not teased as much as most others on the spectrum, and when I was teased it was probably more because I was and am overweight. But I have found some Asperger's reading quite relevant--Lorna Wing's basic description of "passive" autistics explains most social relationships I've ever had. Reading message board posts by aspies (and I've read many) also explain quite a few things from my life and childhood--why I occasionally had trouble recognizing my own body signals (much to my embarrassment), my odd body movements and why I'm clumsy (I actually sprained my ankle from pacing), why I have trouble distinguishing between different emotions in other people beyond a rudimentary positive/negative scheme, why interacting with people always seems so difficult to me compared to others, why others tell me I lack empathy, why eye contact makes me uncomfortable, why I appear relatively inexpressive on video, etc. I've spent my entire life trying to be normal, and on some level it was a relief to learn that my brain is different from normal. Now I guess the problem for me is that I feel I'm not quite different *enough* somehow. Ridiculous, I know. My mom says I should be grateful that I'm high-functioning.
-Does it help me find other people similar to myself? The answer to this would be a resounding yes, as I met my first boyfriend on WrongPlanet and we've been very happily together for more than a year. We fit very well together; when I first met him, I thought he was like a male version of myself. I feel confident we will eventually get married, etc., and I'm very happy about this. He's the best thing to ever happen to me. On occasion, I hear things from/about him that make me think he must be "more autistic" than I am, like finding out he was actually thought to be PDD-NOS as a child back in the days when almost no one got an autism dx, whereas I wasn't though to be that unusual as a child. However, when talking about this we usually agree that we're at a similar point on the spectrum. Even though I still have doubts about whether the label is really, truly, 100% legitimate, I'm glad about it because it led me to him. I don't think I ever met anyone like myself until meeting him.
-Does it help explain my behaviors to other people? Well, sometimes. Sometimes people want to know why I'm quiet, and I've gotten comfortable with telling them I have "Asperger's, a mild form of autism." They usually then understand it's not just shyness, but I worry that I might lead people to think I'm more impaired than I am. However, I think the label has helped people like my sister to understand me better, as she used to think I was just an unempathetic, highly antisocial person. My mother also understands me better, I think, as she used to say to me "I just don't understand you." When I had a meltdown at the doctor's office the other day, my mother used the AS label to explain my behavior, and I guess that was probably good. Before she said the word "Asperger's Syndrome" the person there just thought I was a huge jerk. However, I worry that I really am just a huge jerk and don't deserve to have my behavior explained with a form of autism. Still, I have to admit that the label has helped me. It's helped me get housing accommodations at college, which I desperately needed. When some of my suitemates wrote to the Dean of Students about my disturbing behaviors, it helped to be able to explain to one of them that "I have Asperger's." However, she didn't really seem to have a very good understanding of that, which I guess is pretty typical. Still, I think that if I didn't have the AS diagnosis people would just think I'm unempathetic/antisocial/jerky/crazy. So I guess it is good that I have the dx, because they are more likely to be sympathetic and understanding of me.
-Do I wish to self-identify as having AS? Yes, very much, I just wish I didn't sometimes feel like a fraud while doing so. But if I didn't have the AS identity, I'd think I'm crazy. I guess I just wish I could somehow have ironclad proof of my being on the spectrum--impossible, I know. When I told my boyfriend this, he said he could guarantee that. I'm just not quite as sure as he is.
Hello, welcome aboard.
"I can't think of myself as having Asperger's, because I'm not like that and saying that diminishes others' difficulties."
I said more or less exactly the same thing here recently, that I wasn't comfortable calling myself "disabled" because Aspergers really doesn't cause me that much strife, and it seems presumptuous to put myself in the same category as people who can't see, or hear, or whose Autism is so severe they can't live independently.
But, if a stranger was to read my posts here, you probably wouldn't get an accurate picture of my life. I focus on my Aspie traits, and the problems it causes me, because that's what this place is about. So you'd probably think my problems are worse than they are, and not realise I get on as well as I do. So don't think "I'm not as bad as others" based solely on what you read here!
I don't know how financially feasible or logistically possible this is, but if you REALLY want some kind of physical proof, or want to 'know for sure', you might want to look into a neurofeedback test, or EEG. They pop some electrodes on different parts of your head and see which bits of your brain light up while doing different sorts of mental activity. I had one as part of getting diagnosed, it was free under an Austrlaian federal govermnment program, because the results of my interviews/IQ tests/questionnaires were inconclusive and strange. The EEG showed I had ADD and Aspergers, and also another neuro problem with may or may not be related, and it was this combination that made it so difficult to diagnose.
I've been wondering about these things for a long time, and was wondering if anyone here could relate.
I was not really a particularly unusual child. I preferred to play alone and usually did, but I usually had one or two friends. My mother says that I always seemed relatively disinterested in other people and didn't seem to care much about having friends. All of my stimming was fairly subtle, and my interests didn't seem unusual. I just read a lot, and sometimes like to re-read a book. (Unlike many aspies, however, I did not learn to read until I was around five or six.) I was a picky eater and had mild tactile sensitivities. One problem which I've always had was having a hard time regulating emotions. I've always become angry/upset/frustrated pretty easily. I don't know what triggered these episodes when I was younger, but today they're often instigated by things not going quite as expected or as planned. However, I was never obsessively into elaborate routines or compulsions; I just don't like it when things go differently from how I plan and expect. I tolerated most sensory input pretty well, though occasionally something really terrifying (like going to the dentist or Chuck E. Cheese) would push me over the edge.
Around the age of ten, social things became more difficult for me and my meltdowns at school became worse/more frequent. At this time I also started having more obvious special interests and my family got a computer, which I spent a huge amount of time on. After a few years of counseling, however, I had fewer problems and more friends. Then my family moved across the country before I started high school (age 14), and things just got progressively worse from there. I didn't know how to make friends, became very withdrawn, and slacked off on classes which I thought were boring or a waste of time. I spent more time than ever on the computer (at the time I was very obsessed with Harry Potter fandom) and resisted my parents' attempts to make me "more involved" or have a social life. I was diagnosed with depression and AD/HD. I began taking medication for ADD and became involved with the school newspaper since I've always liked writing. My grades improved and so did my depression. My mother, however, is a social worker and wasn't convinced that the ADD diagnosis was correct. She did some research on her own and began thinking I might have (mild) AS. I went to a psychologist who specializes in AS, and she diagnosed me based off of a few meetings, talking to my parents, and forms filled out by my parents and one of my high school teachers. I was diagnosed when I was 17, right before I left for college.
The problem is that that was more than two years ago, and I still have trouble believing the diagnosis. Sure, I'm willing to admit that I appear very much like a mild aspie today--social difficulties, few if any friends, intense interests, stimming, clumsiness, can't drive, some sleep problems, picky eating, meltdowns, rigid thinking, likes to wear the same clothes everyday, etc. But I can't quite get around the fact that I was so "almost-normal" as a child, and it doesn't quite make sense to me. I intellectually realize that AS/autism is a spectrum and that there are no clear dividing lines, but that's hard for me to accept and deal with. When I mentioned this to both the psychologist who diagnosed me and my mother, they both said that my apparent inability to deal with "the gray area" was itself a sign of AS. I just keep wishing that there were some definitive way I could know I have it, but I know I'm too mild and "subtle" for that to be case. I'm diagnosed, my parents are sure I have it, my aspie boyfriend is sure I have it, his parents are sure I have it, even my mom's friend who has a severely aspie son thinks I have it. I think so a lot of the time too, but sometimes I don't understand why everyone else is seemingly so sure about it. The thought that I don't have it is terrifying to me, because then I'm just hopelessly shy and emotionally unstable. I've thought about this A LOT and AS does seem to make the most sense out of any neurological/mental condition, but sometimes I can't quite get around the things which don't fit. At this point I should probably mention that I've been perseverating on autism/AS for the past year and a half. My boyfriend thinks my inability to accept this entirely is just more of my immense insecurity problem, and while I think there's something to that, I can't help but also think that it's because I was not a stereotypically AS child. I have promised him that I will try to be more secure about this and other things, but it's hard sometimes. Has anyone experienced similar problem with diagnostic doubt and second-guessing? Am I right to question misdiagnosis, or am I simply being too rigid and thinking too much in black and white? Any and all input is appreciated. Thanks for taking the time to listen to my ramblings.
Sounds like me: More characteristic of ADD as a child, but exhibiting more traits of AS in adulthood. That seems to be the case for a lot of Aspies who also have ADHD. Hope this helped.
srp07 - it may help to realise that a lot of autistic behaviours that are regarded as severe in boys (shyness, weepiness, timidity) are seen as positive traits in girls - so what was interpreted as a 'near-normal' childhood for you (you were a 'good' girl) might, on reflection, be seen as a classic Aspie one. I certainly do not know any non-autistic little girls who would prefer solitude over crowds of other little girls.
My childhood was seen as perfectly OK - and yet it was very similar to yours. Only one or two friends, never caused major worries. Picky eater. I didn't have tantrums, as such, but new or unexpected things made me react in an absolutely terrified manner. My mother would have reacted the same way as yours - there's nothing wrong with my child - because I reacted the same way when people suggested there was 'something wrong' with mine: "Nonsense, they're just like me". That's what mothers
do.
And, of course, the ability of psychologists to pick up those of us on the 'high-functioning' end of the spectrum has only been around for a few years.
It doesn't help that most of us (meaning the human race) have very little insight into our own behaviour until much later in life.
Of course we see ourselves as 'normal'! We have no other experience to compare it to.
Lastly, as I could not put it any better:
O' wad some poower the giftie gi'e us, tae see o'orsels as ithers see us.
When deciding whether or not to use a word like aspergers, as long as you meet the criteria to some extent.
I wonder, how much of the criteria do you think someone would have to meet to consider themselves having Aspergers?
I'm wondering, what things don't you think fit?
Well, I've always been somewhat more socially competent than most aspies and my sensory issues are generally pretty mild. I had friends as a child, as my natural method of interacting was generally that of a very passive girl who would pretty much go along with others until it got too frustrating for me. I've always been rather shy and aloof, yes, but I do think I understand quite a few things which many aspies don't. I've never been one to talk about my interests incessantly. I do sometimes misunderstand social things, but I don't think it's as frequent as most on the spectrum. While I'm not exactly normal, I don't think my mannerisms and way of interacting is quite as unusual as many aspies. OTOH, I mentioned to my aspie boyfriend the other day that he seemed "pretty AS" when we went to a group gathering together. He got a bit indignant and said that I acted way more AS than him at the gathering, mostly because of my "incredible shyness." I definitely see that, but there is a small part of me that wonders if I'm not just incredibly shy with serious anxiety and emotional regulation problems. But most of the time I do think I'm aspie, so it's confusing.
I would say that you are an intelligent, sensitive person and that this may lead to shyness. I'm not sure about the Asperger's diagnosis for the following reasons: 1) You interacted with others even if on a passive level. In fact many apsies are inconsistent in their passivity since one often finds them talking incessently about their personal interests. 2) You have progressed socially, whether or not you know it. You have a boyfriend. 3) You are very sensitive to the emotions in others and to how others relate too you.
Well, my boyfriend is also aspie and I met him through Wrong Planet. It was great luck. And, as I mentioned previously, he's convinced I'm aspie and gets exasperated whenever I mention that I might not be. I appreciate your opinion and input, though. I'm honestly not sure that I am sensitive to others' emotions and how they relate to me, though. I think I'm probably more sensitive since researching AS thoroughly, because I think about it a lot, but I think I was often somewhat oblivious in the past. I also have the problem of sometimes thinking people are mad at me when they're not, but that may just be related to shyness. I don't know.
Am I right to question misdiagnosis, or am I simply being too rigid and thinking too much in black and white? Any and all input is appreciated. Thanks for taking the time to listen to my ramblings.
YES, it is always alright to question - anything.
If the diagnosis isn't working for you, reject it. It will be there if you want it back. this is your life, you define it! either way, you're welcome here.