For those with undiagnosed Aspergers...

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I want to make note, that I'm not saying none of you might have it. I'm just really confused since I just want some of my questions answered... so no worries.

How do you really know you have asperger's or a form of autism without getting a proper diagnosis? How come you don't get an actual diagnosis from your primary doctor or talk to someone who can help you decide? I'm not being mean but like I said, I'm really confused by the ones here who say that they have it. I know a lot of people also claim to have it but really don't and that's why I want to have my answers well... answered.

In other words, help me understand... if you can? ^^ I'm willing to learn about this sort of thing as I am professionaly diagnosed as having High functioning autism and I want to know what its like... that's all.

You know a lot of people who claim to be AS/ASD but aren't...how do you know, and why would they lie?

I know I have Asperger's as I meet all the criteria, it's more than 'Social Anxiety' which I was last diagnosed with (therapists suspected Asperger's but as I left therapy a diagnosis for Asperger's was never made), and because I was a very stereotypical autistic child. You sometimes see people asking what the difference is between Social Anxiety and Asperger's, but Asperger's effects your way of thinking in such a way that it's unmistakable...in my opinion if a person believes they're on the spectrum chances are very high that they are.

I AM seeking formal diagnosis - I am doing so to get support, for legal protection against discrimination, to understand myself, and because although I don't think self-diagnosed aspies are any less aspie but having that confirmation I feel cements me in the 'community'. I think some people don't seek diagnosis because they feel they don't need to, it doesn't serve them at all to have a formal diagnosis, and as I've learned here apparently in the US it can cause problems with health insurance and getting a job in the future...which is shocking

How do I think that I have it? Well, it's something like this.

Occam's razor: "simpler explanations are, other things being equal, generally better than more complex ones"

Now, ever since I can remember I have known that I'm different. Sure most people have a few differences here and there, but nothing quite like me. Alone, each difference wouldn't be anything unusual, but there are many of them. But the thing is, all of these oddities about me can be described under aspergers.

It just makes sense that I have aspergers and not a bunch of other disorders combined. While both are possible, aspergers is much simpler, and therefore is most likely correct.

Don't get me wrong, the doubt of it actually does drive me absolutely crazy, but I live in the US, where a diagnosis would do me absolutely no good. It would require a lot of time and money to get one, all for nothing good in return. Isn't it ironic we always think were the best country to live in?

Last edited by SammichEater on 25 May 2011, 8:00 pm, edited 1 time in total.

But that's the thing... I mean, I've seen, not here of course, but others who claim they have AS just because they have no social interaction... that's why it makes me wonder here because I'm just curious. I mean it has to be tough for you dealing when people notice how you are undiagnosed, especially from the perspective of someone that is.

This topic has been done TO DEATH on this board in many variations. Try the search function.

High level NET is that NOBODY knows any damn thing. Even those of us with formal DX do not know for sure because the Doctors still cannot agree on how to DX an adult.

It's not just social interaction. It's a combination of many, many things. I believe I attempted to make a list before. Do I need to find it and paste it here?

A lot of people say that as soon as they read about it they knew it was them.

I diagnosed myself before getting an official diagnosis, and: I read it about it, thought it was about me, and then tried to prove it wasn't. I kept failing.

I was diagnosed with having High Functioning Autism around the age of nine; professionally after they ran tons of tests on me. (I noticed you changed your comment but still wanted to through that out there.)

My parents were the ones that knew I wasn't a normal child. I didn't start talking until the age of four and I also was never into imaginative play like most children my age. Instead of playing with the little kitchenette things... I threw everything onto the floor as play and didn't know how to play with those things appropriately. I was never into social interaction either and when I get closer to fourth or five grade, I was still swinging on swings or picking at rocks even as I got to eighth grade, it was still the same thing. I never get along with my friends because I was teased by my whole class for being "different". It wasn't until I was around nine they started running tests, sending me to different children's hospitals to be tested and finally I was diagnosed with having High functioning autism and ADHD.

But I guess its the same too, if you see it yourself, than something is wrong... sometimes you actually do have it.

Well may parents did not have a lot of money for those kinds of tests....not to mention my dad knew I was different but he's quite odd himself and did not want to have me put on medications or anything because he is of the veiw that its ok to be your own person. My mom seemed stuck on wanting me to be normal and seems to have expected me to do the most with my life out of all my siblings(which I don't see happening). But I knew there was something going on around the age of 7.....I mean I was reading at a much higher level then everyone else, I had trouble socially interacting but I knew it was not shyness I knew there was actually something a bit more serious. So yeah I made up many different theories as to why this might be including possibly being adopted, possibly dropped off from some other planet in place of the child my mom actually had and lots of crazy lonliness inducing ideas. Then just recently my sister mentioned aspergers to me, I looked it up and thought it made a lot of sense and talked to my counseler about it.....and me and him came to the conclusion I fit all the criteria for a diagnosis. Even so I am in no position to pay the costs of a completely official diagnosis.

Well, I kind of became obsessed with autism a few years ago, so that helped me figure it out.



This was not the way with me. The first time I ever read about autism was when my aunt suggested I might be. I immediately dismissed it, having been an avid fan of Seven Days (there's an episode with an autistic, and the actor oh so very much based his acting off of Rain Man, though I hadn't seen that yet), I didn't think that I could be autistic. That was absurd. It's amazing to think that this was only about four or five years ago.

It was a couple years later, as I was writing a paper for English 101, that I realized that I am autistic.

Edit: You might as well ask how I know I'm Taoist. It's a part of who I am, something within me that I cannot deny (though I tried on both counts).

Last edited by MrLoony on 25 May 2011, 8:47 pm, edited 1 time in total.

How do I know?
1 I have done a lot of research on the subject.
2 My mom has been working with autistic children for a long time. I trust her opinion.
3 I've discovered you can convince a psychiatrist you have any disorder you want. I know this because I've done this. Therefore, I don't trust them any more than I trust my own opinion.
Why don't I get a dx?
I don't want that on my medical record and I'm upset at myself for getting other crap that isn't even true on my record when I was a kid.

It's fair. I realized that wasn't where I wanted to go because people who have been diagnosed as adults ask the same question.



Yeah, my parents knew I had all kinds of problems. One of their friends told them I was autistic when I was 10-12ish and my mother yelled at him for being insulting. My first grade teacher told my mother that she thought I had a learning disability and my mother set out to prove it wrong by showing that I was too smart, whatever that means. And then my abusive father was against us seeing a psychiatrist because he thought we'd get him in trouble for his abuse, so I slipped through the entire system while basically failing everywhere.

The funny thing for me was, I didn't see anything specific wrong. I just knew nothing worked for me. And when I read some first-person accounts of being autistic, I knew what it was. I just had to prove it to myself because I was super-skeptical.

'

Yeah funny thing is, they diagnosed me as having ADHD and a learning disability in second grade. But I think I proved everyone wrong in high school. I was able to pass my quizzes and tests easily without reading textbooks, doing homework or even following written classwork. My teachers were amazed by this and wondered how I could do it. They knew I also could write in a superior way then most people at my levels but the only thing they didn't understand about my writing is that I couldn't write anything they wanted me too... for example, if you told me to write a 400 word essay about saaay... cats and dogs I would only be able to write half a page. It also made it hard to do current events as well. My writing abilities are a gift because I can write down every little thing on my mind that makes others feel amazed with my challenges and disabilities... they find it hard to believe that someone like me could seem so mentally, emotionally and developmentally challenged could do such a thing. I've written tons of journals too but they were just things on my mind that I could talk about but could only write down. I mean I'm pretty much in the age spectrum of eight and ten... yet I write with superior ability. So it baffles alot of people...

But I can see how it feels too, when people tell you that you aren't autistic, undiagnosed or not, especially if you can do something everyone else finds so out of the ordinary that it brings such a shock.

I was never taken to doctors as a kid. I was being abused by my mom, so maybe it was the same reason as Verdandi. I don't remember ever seeing a doctor as a kid. I can remember my sister getting her shots, and I must have gotten mine too, but my parents have never been big on doctors. They tested me to see if I was gifted in grade 2, and it turned out I was gifted in math and reading/spelling. They put me in gifted classes, and my mom knew I was having social difficulties, but chalked it up to being gifted.

I was also 3 months premature, so my motor skills delay was chalked up to that.

As an adult, I'm finding it hard to get a diagnosis because I've learned to mask many of the things that would have gotten a diagnosis as a child. That, and I've never talked to someone who knows autism. I've mentioned it to two medical professionals and one of them said I didn't seem like it, and one of them said she'd seen adolescent boys with aspergers and that I didn't act like them.

So I need to find a professional with experience to diagnose it, which is actually quite hard, or just run with my current diagnosis of social anxiety and see if that can get me any help. What I really want is social skills help.

That reminds me... I'm considered my mom's miracle child because I wasn't supposed to be born. They told her she could never have children because she had cervical cancer... she is now a survivor. Anyway, she had to have a c-section on my as well because of her medical concerns with cervical cancer and also because I was 10 lbs and 2 ounces at birth.

Me and my dad also suspect that my mom has alot of autistic like traits. She tends to repeat herself a lot and also has alot of learning difficulties. She is often child-like as well. But she was never diagnosed with anything but a slight learning disability because back then, they didn't have a diagnosis for autism as much as they do today. But she does have the traits because she talks loud on the phone, repeats things, tends to make weird noises... but I really don't know. The only problem is she is actually quite social... way more social than I could ever be.

I have heard that this misunderstanding (that AS is simply introversion and difficulty fitting in paired with strong interests) is common in some corners of the internet. For instance, I've heard rumors that this is common among people in places like 4chan. This is just a discussion I once had with a friend of mine; he knows more about those dark corners of the internet than I do so take the information as you will. I think this is the kind of thing you're talking about, though? Not so much places like this that are geared towards discussion about AS/autism, but places geared towards other interests where you see people like this? I've never seen first-hand proof of this myself, but I've heard that Asperger's is seen as something of a badge of honor among "hardcore" people on the internet.

I think it's just a case of people being uneducated about the subject, really, and possibly that people aren't being very honest with themselves. It's hard to look at yourself objectively and really recognize what your problems are, so hard that sometimes people simply won't or can't do it.

Going through life right on that border of not being quite normal but not quite different enough to warrant the kind of attention you received in your childhood is difficult in it's own right. These people have to question every day what makes them so different and what they're doing wrong and why people don't like them and why things aren't as easy for them as it seems to be for everyone else. These people do certainly have a very real problem fitting in, regardless if that problem is within the spectrum.

And you have to think too what would be harder, to be told that the answers to all these questions, to why you don't fit in and why things are so hard, is that there is something fundamentally different about you that you cannot change because you are on the autistic spectrum, or that there is absolutely nothing wrong with you at all, that you are just an unlikable person who doesn't have difficulties but is just plain difficult. To be told that you are part of a community of brilliant, misunderstood people who make great contributions to society or that you are simply a one-of-a-kind freak who can't do things right because you're just not trying hard enough?

In a way, it is easy and it is a relief to contribute the difficulties you face in life to something that is out of your control, something that was decided before your birth, something you can never change. It is incredibly hard to look yourself in the eye and recognize that everything that is wrong with you is your own fault and that you are the only thing standing in the way of your own happiness.

I can't speak from the perspective of someone who has been diagnosed on the spectrum. I'm certain it comes with it's own trials and tribulations, some of which may be more difficult than I could ever imagine. But I do know that I myself live with these doubts and fears, that maybe there is nothing wrong with me and maybe I really am the only thing standing in my way to a "normal" life. It's hard, not knowing. And it's nice believing in something bigger than yourself that's out of your control.

I am making plans to seek a professional confirmation, and I know how painful it will be if the end result of my search is that I don't have AS. Knowing about AS has changed the way I see myself. It has helped me to better understand my own strengths and weaknesses and answer questions I have carried for a long time. But when I walk into that office there is a good chance that this understanding will be ripped away from me again. I am afraid of that. And because I am afraid of losing my understanding, I am patient with those still seeking theirs. ; )

(Ugh, I need a technologically-imposed word limit. I am sorry I am so wordy!)