The undiagnosed - do you hope you have AS?

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agreed.. 100%

AS answers why i've been seen a big weirdo all my life and even told my parents that I must have been adopted and must have been born in a different country when i was 3.

AS gives resolution to a lot of things... I used to have melt downs before, but never realized what caused it... I would just get angry/freaked out all of the sudden and lash out.... But now, i realize it is environmental stuff..itchy clothes, irritating noises, people touching me, temperature.... and now i can avoid situations that make me have melt downs.. ive had a better control on my meltdowns since finding AS, and if i didnt have it, then i would be seriously puzzled as to why i dont fit the criteria.

I don't hope one way or another. I am who I am, regardless of what name a professional would put on it. As someone else mentioned, I recognize that what goes on in my head is very similar to what those in the AS community report experiencing. As such, I have a strong feeling that I could be labeled if I was inclined to seek out a label; but it's not hope.

I was not diagnosed until August 6th this summer. Before that around Apr 23, 2010 I did not know what Aspergers was I was diagnosed with ADHD but really did not have a lot of the symptoms of it. I thought I had some form of insanity and kept quiet about out of fear of being put into an instituion. Then one day I saw a tv program autism spectrum disorders and they mentioned the traits of Aspergers I knew that was what I had so I made some phone calls then within four months I was diagnosed with it and found out I did not have ADHD nor was I anyway learning disabled just autistic. My reason for getting a diagnosis was there was people on here accusing me of being a poser so I decided to get checked out so I could rub my diagnosis in their faces. I never doubt anyone on here if they think they have it. But you will never know until you see a doctor. It will take weight of your chest knowing your not crazy just different.

That's exactly what I thought when I was a teenager.
I never mentioned it though.

For me, hope isn't the right word either.
A new diagnosis would not change anything - not in my personality and especially not in the need to cope with normal daily life. A label or the allowance to apply for a handicapped ID would not change anything (except my self-confidence, I suppose).
At the moment, it's enough for me to read about autism and to meet diagnosed people having the same problems as I have.

ot would make no difference to the way i feel

It would be nice to have a professional confirmation, yet I would readily accept *any* diagnosis that actually made sense ... and I cannot presently imagine how anything other than AS/HFA could/would truly fit. For me, a diagnosis of AS/HFA "explains many things for which I cannot otherwise account", and I borrow that statement from Bill Wilson in "Alcoholics Anonymous", the book, where he is commenting about alcoholics' mere "lay opinion" of something a brave doctor had once said about their dilemma at great risk of much criticism from his colleagues.

It is hard to say what I would have felt and done about it had the possibility arisen at a time when formal diagnosis might have made a difference one way or the other.

Unless there had been concrete benefits, though I would likely have skipped it - I am not much on certificates and expert opinions [other than my own in my areas of expertise, of course].

As it is - I mine the literature and WP for useful insights into my self and others, and at least one relative who knows about my probable [a less cautious scientist would call it certainty] position on the spectrum has read things she says help explain to her why I always seemed so peculiar.

Which is as positive an outcome as I ask.

And there is my brother who informed of the possibility angrily rejected it telling me not to try to excuse my behavior by appealing to AS - which is as negative an outcome as I am willing to accept.

I am just confused. Different people saying different things! Ranging from a therapist that said I have AS and family members and old psych reports saying I have no social skills, to people that I hang out with nowadays (one that works with aspie kids) that say I don't have any social impairment at all.

Currently I am down with Schiz and Bipolar. I do have mood problems and psychotic episodes though. It's probably the best dx they can put me under at this point.

That is the main reason I find being here on WP so important: Either I "waddle and quack like a duck" or I do not ... and thus it makes no real different whether any outsiders with all their own opinions about our locomotion and communication can even recognize one.

I wasn't hoping for anything in particular. I didn't know what autism was (my impression of it from the few words I'd heard described to use it was literal and therefore nonsensical) and wasn't expecting it. Nor did I realize even after diagnosis (because information on what autism meant in terms of inner experience was virtually nonexistent, and reading Williams and Grandin didn't even touch on enough of it) that autism was the answer to the biggest secret of my life, which I was both too afraid to tell anyone, and unable to put into words even if I'd tried my hardest.

You see, at the time, I was playing along with anything anyone told me about myself as long as I was able to understand how to play along. (I didn't understand autism so I wasn't playing along with that, just being that, but some kids were having great fun convincing me I had multiple personalities among other things.) So I was going along with everything from "you're normal" to "you're crazy" all at once.

My secret was underneath the "normal" act and the "abnormal" act there was something going on I felt was so terrible it probably had no name and nobody would have heard of it. Since my communication was highly limited (I could use words to recite what I thought was expected but only rarely was I capable to use them to communicate my inner experiences of the world) I would not have been able to tell anyone even if I wasnt too scared to.

And this terrible thing was that my brain didn't work right in a massive way as far as I could tell. Some of what I was hiding with the acting was that I really was "defective" much like kids with learning disabilities pretend to be deliberately joking around rather than feel "stupid" that they don't know the right answer. Because I had always been mysteriously "wrong" in some way, but now things were getting worse. I hadn't been able to follow school since junior high when I started burning out (others framed it as boredom, it was the opposite, overwork). And as hard as I tried to function both academically and in daily life in general, I just kept hitting a wall.

And it just kept getting worse. The more I tried, the more it happened. I was back to how I had been before I had gone into the overdrive that convinced others I was massively capable in ways I either wasn't or wasn't so much. Every day it got harder to move, to speak, to understand language, to understand my environment, to connect with my body, to do anything at all. More than anything I feared being exposed as the far less competent person I was. Had been all along before I learned to fool people. So I reacted in two ways.

One, I went into overdrive again as much as I could. This produced a ragged-looking pattern of abilities. Jet forward, crash and return to who I was. Five steps forward, ten steps back. This had the added effect of convincing all the professionals into thinking their latest pill or therapy was working. Until it stopped and they either increased it or tried something else. Rush forward, improve, improve, improve. Hit that wall, and everything disappeared instantly into shutdown or meltdown then obvious burnout.

Two, create any plausible reason for what was going on that I could. Act like I'm doing it all on purpose. Act like I'm crazy, goaded on by professionals and classmates, into a mishmash of every possible condition they handed me (or forced upon me). Anything to explain to them why I was losing so much so fast. Because deep down I feared that it was something with no name. Something terrible. Something that made me truly defective. And while I desperately wanted answers, I even more desperately feared people finding out the true answer which would prove to the world I was deeply defective.

The irony was that once I fell into the hands of a psychiatrist after a suicide attempt, he more or less knew the answer already. On hearing my history back to birth, he told my mother I sounded like an "idiot savant", and an "autistic" person, with additional neurological conditions. At that time autism meant hopeless. He didn't want insurance to deny treatment so he wrote PDDNOS on the official papers, along with CNS disorder NOS for the additional issues that were making things get harder and harder. In the time I was desperately pretending to be anyone but who I was, I'd been discovered in the form of written PDDNOS or DDNOS (developmental disorder NOS) written in my diagnostic papers about ten times altogether. This was later turned into "psychotic since infancy, schizophrenic since childhood" by some psychoanalytic types at another facility, then back to PDDNOS and CNS disorder NOS later, and eventually after insurance was less of an issue, autistic disorder and CNS disorder NOS as it remains today. The only functioning label I ever found in my records was "low functioning" written back in the early PDDNOS days.

It took me a long time to understand and accept my diagnosis though, as might be imagined given it represented my dirty secret. At first these arcane strings of words meant less to me than most words did which was saying a lot. "Disorder" half made sense, but not "pervasive", "developmental", "not otherwise specified", "atypical", "autism", "central nervous system", "idiot savant qualities", etc. I'd barely heard of such things. I could recognize myself to a degree, including elements of my secret, in Nobody Nowhere and Thinking in Pictures, but I never fully made the connection. Easier to stick to the labels that made sense to me and that didn't touch on my secret in any way, and really the words of my more accurate labels were way outside my receptive vocabulary anyway.

What started connecting the dots happened in two ways. One, a girl I knew who had tried hard to be my friend since junior high without much reciprocation from me... she read a lot of Donna Williams and was always telling me how much of me she recognized in the books. Two, in the system I kept meeting other autistic people and some of them made sense to me in ways nobody else ever had. Some of them did things in public that I had tried all these years to keep private so nobody would see I was defective. And one of them shared my interests and had mutually comprehensible body language and we rapidly hit it off despite my masquerade of just "working with autistic people" (I.e. spending time among those like me and being praised for it). We spent long hours doing "parallel play" type stuff, and that other person who tried to be my friend for all those years started doing similar things to connect with me -- sharing stimulus and the like, lots of sensory activities, which was amazing and made me feel her equal despite having always felt inferior to her highly cerebral nature. (Cerebral had failed me a long time ago, right around when we had first met.)

Soon I connected to the online autistic community and was rapidly learning more and more about myself. And my mother finally told me some of the truth about my early development that she had told my shrink but not me. How I lost language in infancy. How I screamed when approached in preschool. Lots of similar things. But it was the inner experiences of other autistic people I related to. It would take much more learning before I would understand that my outer behavior was in fact read by nonautistic people as fairly standard autistic behavior. I flat disbelieved the many people who told me I "looked low functioning" and things like that, although later I realized that really was often their perception not only when I was just being myself and not trying to pass, but also when I tried hard to look nonautistic. I eventually gave up acting like I was either normal or crazy-of-the-month because I had been found out as who I was and no more hiding was necessary. I still couldn't explain why though -- I have a time delay on my ability to describe my inner experiences. So I gave some BS explanation or another and jettisoned all the acting.

I also, just to be sure, spent quite some time away from everyone including my parents. I dropped every facade, every act. I resolved to accept whatever was left as my real self. And when I dropped everything, what was left was an autistic person. Not the most common type by any stretch. But a person whose perceptions, thoughts, and actions were such that autism was the way a professional would label them, easily. So I accepted that and moved on.

One important thing happened at an autism conference. I froze up in front of someone. I was completely terrified. She turned out to have the same condition I do though and hooked me up with others who have it. A parkinsonlike movement disorder (aka autistic catatonia) that some autistic people get in adolescence. Suddenly a huge part of my burnout (or at least the forms it took), the movement and speech issues that got worse every year, was explained. She connected me with journal articles about it. My mom sent it to my shrink who immediately recognized it as what he had seen for the past six years or so. Another of my secrets explained as nothing so terrible or shameful.

I made friends in the autistic community through shared interests and shared experiences of the world. I discovered through them my own voice, finally not just borrowed words but words conveying my own thoughts. I learned who real friends are and what they act like and jettisoned every last bully pretending friendship. I learned that far from a terrible secret, my burnout period may have just been my brain telling me, "Hey, this way you are acting is not in line with your real abilities. If you continue to pretend you're someone you're not, I will wrest control from you and insist you learn to function the way your brain is intended for. NOW." That this is not as uncommon as I imagined, that I had friends with the same burnout and same movement disorder. That my secret way of thinking was not defective, just highly nonstandard. And so many other things about myself and the world. Those diagnostic words that sounded like gibberish were the key to so much understanding.

So for me, the diagnosis was unexpected. I thought I was hiding myself well. But my shrink saw through me instantly. I never expected the secret to have a name. I never expected any of this. And yet the diagnosis turned out to be one of the most important events in my life. It shaped so much I can barely imagine life otherwise. But before diagnosis, and later before I understood the words in the diagnosis and how they applied to my life... I not only expected nothing at all like what happened, but feared anyone diagnosing me accurately for fear it would prove I was defective among other terrible things. So the positive results were impossible for me to foresee and if anything I hoped in a sense that I'd never be accurately diagnosed. I certainly couldn't hope for what I actually found because it was so far out of my comprehension at the time.

My diagnosis, though by a doctor, was unofficial and in absentia. I've done some reading on the subject and have concluded he was right. That's enough for me. I neither need or want an official diagnosis because of the public stigma associated with ASDs. My chosen career field revolves around the ability to carry a firearm and I don't trust the government not to say "oh, you have a form of autism, you can't do that". I'm in security and intend to get into law enforcement. I know that my AS is mild enough that I can function there but I don't trust the powers that be to make that distinction.

Do I hope I have AS?

Odd question.

I suppose I do "hope" I have it because it perfectly describes all the issues I've struggled with in my life. To go for a Dx and find out I DON'T have it would put me back to square one to understand why things are so messed up in my life. If ultimately I am "normal," then all of my failures, inabilities to get along, etc. is because I'm just a messed up person.

I know using words like "defective" is confusing because if you have AS, you could debate that you are "defective" in that respect, but to have a neurological difference is NOT your fault. To just be a screwed up person ultimately means it is your fault.

Thats exactly what I mean by "lean back and relax", so do you really need to be innocent? If I receive a diagnosis and therefore can say "its not my fault"... what would it change? For me: definitely nothing. Im coping, and that means I have to constantly encourage myself and not take problems so seriously and not let them destroy me, cause my only chance is to keep fighting, no matter what I diagnosis I have.
If I would have to make the insight, that I dont have AS, but have failed as a human and become the outsider I am, just because of my own stupidity, I would take it and fix it from now as well.
So if I have it or not; I really believe I can change anything I want; learn to deal with anything I discover and that I mean will be necessary to deal with to be able to cope.
Knowledge about AS has just brought me further, because others have explained many of my problems in understandable words. So Im just thinking about it as one of the basics to understand myself.

Beware that the undiagnosed will suffer "Revelation Syndrome" too.

Im not english and I have multiple ways of understanding this sentence.

I see a big difference between having a neurological difference producing challenges in life and having failed in life because of flawed character. Character is still an issue, of course, but at least now my fears of having just been a "phony" (rather than a circumstantial or situational chameleon) or a double-minded man or whatever else can be put to rest and I can simply focus on whatever I must do to live with whatever I have.


Sure, but I happen to be someone who is easily paralyzed by unanswered questions behind all of that.