Apparently I never had AS to begin with...

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I have a psychiatrist that I have been seeing weekly for the past year. The reason I see her is due to my anxiety issues interfering with my daily life and overall functioning. Because I have significant issues with my identity, specifically, whether or not I am on the spectrum, she asked to see my childhood records so she could get a better diagnostic picture of the situation.

After two months of scrutinzing them, my psychiatrist, who can see through the language and test scores, gave me an entirely different take on what was really going on with me at the time than my own.

For starters, my parents knew the dangers of having a label. The sole reason it was called into question was because I was having emotional and social issues at school: they thought I was an anxious and sensitive, yet otherwise normal child. Some specialists were called in, and an autism specialist brought up the idea of Asperger's. The other teachers, upon seeing this kid who was, in reality, just overly anxious and mildly socially/emotionally delayed, did not know what to think of me as I went to a small-town elementary school, and in contrast to the few peers in the class, I was different at times, so, of course, they greatly exacerbated my difficulties whenever they discussed them. They wanted to pigeonhole me, because to THEM I was different.
They went with the idea of AS and decided that I specifically get tested for it.

Second, I was given a "tentative" diagnosis of Aspergers at the age of 7 (in 1994) noting that "A. has made substantial progress and in a years time she would definitely not meet the criteria for this disorder [verbatim]" This was because the psychiatrist who assessed me, as well as all of the specialists who tested me, thought that this was the closest possible thing that fit me at the time. It did not mean that I fit this profile or that I had anything resembling Asperger's. I was reassessed again at 10, and the result proved inconclusive yet again. He made another "tentative" diagnosis, this time, it was PDD. When I found the reports at 14, I quickly interpreted them as "There is something drastically wrong with me to the point where I was given this diagnosis". From then on, it merged into a part of my identity. From then on, I was an "Aspie".

My psychiatrist told me that because of all of the language used in these reports and the way teachers hyped things up, I was lead to believe that I had very significant issues as a child and that I definitely fit the criteria for AS. As well, the treatment from my teachers was harsh and unsympathetic, so this only furthered my belief that something was wrong with me...even at the age of 6, I began to express that I wanted to do the same activities as everyone else, as opposed to having the specialists constantly pull me out of class to work on special ed stuff. The reality was, even though I had some obvious traits that could suggest it, I did not qualify for the disorder even when my symptoms were the most present.

As well, and this is the part that angers...no, infuriates me the most, was that, in our province, there is a significant difference between labelling a student for school accomodations, and a diagnosis by a professional. For accomodations to exist in school, the person has to be psychologically assessed but not necessarily diagnosed. The teachers and school staff are, for the most part, unaware of this. For an accomodation to be given, the person has to be "boxed" into the closest group of disorders they have, and this label is seen very clearly on all of their IEP materials. In my case, because the closest label to what I had was Aspergers, all of my IEP stuff made references to Aspergers and had "Asperger" written all over it. Therefore, every person who worked with me...because they did not know that there is a difference between a psychiatric diagnosis and an accomodation letter, was lead to believe that I had Asperger Syndrome and treated me as such, when I did not.

And being an impressionable young teen, I worked it all into my identity.

It's not just me. The problem with this is that we have all of these students recieving accomodations believing that they were given a diagnosis when they actually were not, and, thinking they DO have a diagnosis, define themselves as such. But when they notice that most things about them do not fit this label, they will run into serious issues with fitting in and knowing themselves.

My psychiatrist said "You have NO idea how many people and families walk in here struggling with self-esteem, anxiety, and depression issues because they believe that they were given a label that they don't actually have. Labels are damaging, and while they help the people who really ned it, they do more harm than good for the ones who will only need one or two accomodations such as yourself."

I did not know any of this before she told me this, and now I feel furious and duped at the so-called "educational" system, which NEEDS TO CHANGE if they seriously care about the mental health of their students!! !! ! I believed them over my own parents, who, the whole time, insisted that I did not fit that profile. Years of anguish trying to fit this profile unsuccessfully could have been saved. I could have been happy. I could have had self esteem. I could have had friends, knowing that I did not have a social disorder that made me incapable of doing so.

Feedback encouraged. I am so effing furious right now.

Okay, I was right there with you until you totally lost me at the end.

Wait, what?

So, are you really saying that if you had NOT believed you had Autism, you would have had all this?

I'm definitely missing the logic behind this. Somehow this just doesn't work for me. It doesn't make sense.

Is this some kind of "reverse placebo" effect? Are you really saying that nothing more than the simple belief that you have Autism will actually create all these complications that come from it?

I'm not being facetious by any means. Please trust me. I'm very serious about this.

This doesn't make any sense to me because it flies in the face of just about everything I've ever heard about people who believe they have Autism but really don't have it at all. Everything I have ever seen to date of people who think they have it, but don't, indicates that the truth reveals itself eventually, but fairly quickly simply by virtue of the fact that their behavior and life course reveals it. Not because they needed a doctor to disprove them (though that does sometimes happen.)

What throws me as well is the fact that my own experience is totally the opposite. NO ONE would listen to us when we tried to get our kids evaluated. Not for years! It's because of this that it's hard for me to believe that after years of that many professionals seeing it, it only takes one to convince you it was all a great hoax.

Personally, and this is based only on what you've written here and reflected by my own experiences, I'm far more suspicious of this last doctor who contradicted everyone before him.

Why, specifically, has he discounted Autism? Was he specific as to why?

From what I can gather from your entire post, I'm guessing that what really may have happened is that you have grown and adapted so well, you don't warrant an DX anymore. If you had received a proper one earlier, you would most likely still have it. But now that you have outgrown many of your symptoms (learning to adapt, adjust and otherwise hide them), you are no longer able to get one. In order for a doctor to DX Autism, the traits have to be present. They will not incude historical traits, because they aren't supposed to according to the DSM.

This is the reason I received a DX of PDD-NOS, even though historical symptoms confirmed by family were all present as a child for AS. She could not incude anything that no longer presented.

How long has this doctor known you? Maybe he is simply dismissing it because not enough is there to see anymore. Maybe he has a low opinion of professionals in public education. I'd be thinking about the motivations behind all this.

I'm pretty skeptical. But then, that is my nature.

I see your point and for this reason I am glad I was not diagnosed until I was an adult so I know that I would have felt different and had trouble fitting in no matter what.

A label would definitely have made me feel like I was less than other people cause there isn't really a "separate but equal". If other people acknowledge and make a big deal about a difference and you are in the minority you do feel lesser.

On the other hand I feel that maybe if I were diagnosed as a kid I would have received more accommodating treatment and made it so I understood myself better and made it so I wouldn't have had the complete coming-apart-at-the-seams I did starting as an adult. Of course since you don't actually have it this is different from your case. But I can easily see myself going on the path you were on, never coming apart at the seams and diverging onto a path of no functionality, and as you did realizing I don't have it. Really I think it's too nebulous to say I have it or don't have it. I have some of the genes. Being diagnosed when you were would have prevented the major mess my adulthood has been so far but being diagnosed as late as I was allowed me to feel like it was not written in the stars that I would be different from the others, and created in me the mindset that I have control over what I am. So. Sorry you went through that.

It did just occur to me that because my own experience is so different from your own, it may be screwing with my perspective on your situation. I grew up with Autism, never knowing or believing I had it. I just thought I was a weird little nerd. So I have no idea what it's like to form an identity around a label. I never had one.

Oh, and I see SHE has known you for a year. I missed that the first time.

I missed a few other things too. I'm sure there's a lot more to this story than what you've posted to, so....

Based only on this so far, I'm still a bit skeptical that you aren't Autistic.

How do you score on screenings? What symtoms do you now, and did you have as a child? Take a look for yourself as if you never have before. Then ask yourself if you really think she's right.

Or maybe you've already done that?

There are people on the spectrum that don't require treatment or accommodation and therefore don't warrant a diagnosis. A person that one clinician would say has Asperger-like qualities but not enough to warrant a diagnosis could be diagnosed as having it by another, either way said person is probably touching the spectrum. She may just be telling you what she thinks you need to hear and it may be that another doctor would disagree with her completely.

Asperger's was never mentioned in my IEP records. I was placed under Other health Impaired category. I was never treated like a label but I think teachers tried to treat me as such but I always fought it in high school. They tried talking me out of doing driver's ed, drama, Spanish and I fought it. Then finally I told them to just let me take the drama class and let me find out that I can't do it. That shut them up. Even other kids acted I was incapable and then they were all shocked I got my license. I hated being under estimated.

I think people should never try and set limitations for aspies, nor aspies who have it.

I was never treated like a disorder by my parents and I never wanted to be limited. It is a shame how people try and be a label they are given so they let it limit them and stop them from doing things and trying.


So you don't have Asperger's after all and you aren't autistic? So what about the traits you had?

Last edited by League_Girl on 10 Nov 2011, 3:27 am, edited 1 time in total.

This person probably does have it. I was diagnosed by two different doctors but my currenty dr just thinks I'm bipolar. I know I have Asperger's.

I'm glad that you're able to separate your experiences from mine, as because of the things you have mentioned, they seem pretty different. My psychiatrist wouldn't let me do a screening or evaluation for ASD as she knew my main issue was not whether or not I had it, but that I wanted to fit a label desparately to the point where I was obsessed with it.

*She agrees with me that I have a few traits, but not the whole picture. She keeps stressing to me that a few traits does not equal a diagnosis and she says that what I have, and have had in the past is not considered clinically significant. I saw a LOT of specialists during the time I was assessed, and they have all seemed to share this view despite the teachers insisting that something was "wrong" with me*

My main issues are anxiety/emotional regulation based instead of social/communication based, and the only traits that have stayed with me from childhood are obsessional thinking and black and white thinking. I honestly believe that I have had an anxiety disorder all along, while perhaps being somewhere on the mild side of the spectrum where I don't have anything strong enough for a diagnosis.

The only argument I would make against this was that I definitely percieved the world differently as a child. I did not like unpredictablity, had a imagination and interests so vivid that I would "shut out" the rest of the world, and had heavy synesthesia, which I would get overwhelmed by at times. (My psychiatrist likens this to having an art or music talent fading with time, and synesthesia was my "talent").

By high school, these symptoms, save for the obsessional thinking, had completely faded away It is also of note that I was unable to make eye contact in preschool, but appeared to do so without a problem around the age of 7. All of these things do not necessarily equal Aspergers though, or that these were significant enough to warrant a diagnosis.

I truly agree with her, because my parents and so many others I have talked to feel the same way, and I have been questioning this for years as well. I don't doubt that I'm on the spectrum in some way, and will still refer to myself as a "spectrumite", but I just don't feel that defining myself as "Aspie" is really being true to how I actually display, think, or percieve the world.

Last edited by anneurysm on 10 Nov 2011, 2:20 am, edited 2 times in total.

You're one of the lucky ones who didn't have to...nor choose to, be restrained by labels, and I think it's great that you have taken this stance. "Other health impaired" is a much more neutral label as well...perhaps the school system up here should adopt labels like that one.

So you are pretty much in denial now or something.

psayles56: If I was in denial, I would not have been questioning this for over six years and thinking about it every single day.

I'm not sure you're grasping the idea of "traits" vs. "disorder"

It is possible to have one or two aspects of a disorder without having every single thing....and in order to have a disorder you have to have all of the criteria required for a full diagnosis.

In the DSM-IV, the criteria for Asperger's states that:

Note the word "causes". While my functioning is impaired somewhat, it is not caused by any of the criteria for Asperger's. My functioning issues, according to people who know me well, stem from excessive anxiety over a percieved inability to do things, rather than an inability to do things. For example, if I did not have anxiety in social situations, I would be able to socialize to the extent that others do. This anxiety is what causes the impairment, not my non-verbal behaviours, not my lack of reciprocity, not my inability to develop a friendship, but due to my self-doubt and scrutinizing behaviours.

It's also impossible to say that I definitely don't have it when you have never met me and see the way that I interact with others. People keep telling me that I "present well" for someone supposedly on the spectrum. That in itself should be a clue that I may very well be on the spectrum, but I am not significantly impaired.

Last edited by anneurysm on 10 Nov 2011, 2:48 am, edited 1 time in total.

I have been dealing with this for almost 12 years okay.

It's nothing to get defensive about...this situation is not about you. What are you dealing with? Are you in denial that you have AS?

The strongest impression I have of you is your posts about not being sure you actually are on the spectrum. I'm glad you're finding out where you do fit, though. It sounded like it was causing you a lot of confusion and (possibly?) distress.

I can relate to the frustration of a misdiagnosis - I've had a couple very recently which caused some drama and frustration with other people who believed they were true (fortunately all online - no one who's met me believes them). I can't imagine going for years or most of my life believing that I had a particular cluster of symptoms that I didn't, let alone trying to fit myself into them.

Maybe you were signifcantly impaired at the time of diagnosis, but you have gotten less impaired for whatever reasons. I have was a whole heck of a lot worse when I was diagnosied than I am now.

You really can't know how someone who posts online presents in real life. Interestingly enough, when anneurysm posted a video of herself earlier on, people questioned her position on the spectrum. When she posts text threads, though, people start saying that she must be on the spectrum. You never know how she presents in comparison to you.

Yeah, I think being given a label as a child is different from finding out about it as an adult. When you are an adult, you have more freedom to define yourself. When you're a child, you tend to be influenced by others more because you do not have as much knowledge and experience of your environment.

Anneurysm: I don't trust my ability to tell who's on the spectrum or not. I have met several people who are supposedly on the spectrum but do not seem to exhibit any particularly neurotypical behaviours that normally really irritate me (but they might have a much better social understanding than I can perceive, given my own limits on evaluating their behaviour). Admittedly, you have exhibited some of these behaviours in the past. However, I am thinking of two people specifically who think you are on the spectrum despite your doubts about being so. I wonder, though, if they themselves only have traits and not the full package. Again, I'm a bad judge so I won't make any certain conclusions about this.

Your story makes total sense in relationship to my life and the people I have encountered, too. I know a girl back from my high school who was allegedly diagnosed with AS, yet she seemed very social. And by very, I mean being in the centre of her social circle and presenting as no more than just slightly eccentric. While the special ed teacher insisted that she had AS (I kept arguing with him over it), I wonder if the same thing happened to her.

I wasn't aware that something like this was happening all over, though. This might even explain the "rise in autism" and the "overdiagnosis of ADD" that people constantly talk about. I think the school system should really find a way to accomodate for individual traits in isolation instead of giving everyone a global label like that.