Is it absolutely insane to deny an Aspergers diagnosis?

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whatisintegrity
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01 Aug 2014, 8:32 pm

I was diagnosed very young, age 5, by an autism expert/psychiatrist, and was put in specialized education because of my issues, which led more professionals at my district to diagnose me with Aspergers. Re-evaluations every year continued to suggest "Autistic support". I was also tentatively diagnosed at the age of 17. Now I'm 20. You do the math.

My impression of the school diagnosises was that they were brief. I also think that 10 years ago was a different time for Aspergers. A different time as in there weren't as many discoveries as there were now and testing has considerably changed. That combined with a milder case, and other things like adhd, anxiety, later in my life, depression developing for numerous issues, and suffering from family issues/poverty-like conditions in my early teenhood, all lead me to believe there is a chance I may not have had it at all, especially since I had other things comorbid going on. However, it's weird because I was testing positive* for it so many times, no matter how tentative the diagnosis or suggestion was.

Would it be crazy to get tested a couple more times? Go consult a neurologist, an Autism expert, and a psychologist about it? Am I just wishful thinking I don't have it? Must I definitely have it since I was shipped to a special private school and held that placement on-and-off for so long? Am I f****n stupid and illogical?

*My way of saying I was diagnosed. Half joking.



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01 Aug 2014, 9:01 pm

For all practical purposes it probably doesn't matter whether you "have it" or not. What really matters is what "challenges" are disruptive to a happy life.
If those challenges are best addressed by using Asperger's "therapies" then use those. If something else then something else, grasp the freedom. =)
Sometimes it's okay to "pry things open" with a screwdriver instead of a crowbar. (that's a metaphor {or something} meaning a screwdriver isn't called a prybar but it still can work like one.)

Does this make any sense? I hope so.

If you hate the label, then I think it's perfectly acceptable to (re)label yourself as anything you wish!
I mean, it's YOUR life not anyone else's, right? =)


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ImeldaJace
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01 Aug 2014, 10:08 pm

Welcome to wrong planet whatisintegrity! :)

I don't think you're being stupid or illogical at all. I think it's natural to want to know something like that. And I think it's perfectly ok to not want to have Aspergers or to carry the label of Aspergers.

And unfortunately, testing does not always produce the correct result. Your situation is similar to mine, except that the opposite chain of events occurred for me. I also have anxiety and ADHD. I have had four extensive (roughly 8 hours every time) neuropsych evaluations done since I was 7, and Aspergers was not diagnosed until the last one when I was 17.

Getting retested holds a possibility of going either way. What I would ask myself, though, is if it is really worth the emotional turmoil to see if the label still applies or not.


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02 Aug 2014, 12:15 pm

Perhaps. But for me, I am under different circumstances because I have had multiple diagnoses, majority being high functioning autism.


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Azereiah
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02 Aug 2014, 1:09 pm

I'm personally strongly considering challenging my diagnosis as well.

I was diagnosed as having Asperger's Syndrome when I was 11, and the negative symptoms were already fading. I'm 21 now, and all I have left are the non-linear thinking and the executive dysfunction.

I know that I'm not neurotypical, but I strongly doubt that I have AS.



You can overturn the diagnosis if you think that the treatments you're being crammed into aren't ideal for you. I want to become completely functional myself, and I think that my AS diagnosis is preventing me from doing so in the right manner. You might be in the same boat.



whatisintegrity
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02 Aug 2014, 2:52 pm

Azereiah wrote:
I'm personally strongly considering challenging my diagnosis as well.

I was diagnosed as having Asperger's Syndrome when I was 11, and the negative symptoms were already fading. I'm 21 now, and all I have left are the non-linear thinking and the executive dysfunction.

I know that I'm not neurotypical, but I strongly doubt that I have AS.



You can overturn the diagnosis if you think that the treatments you're being crammed into aren't ideal for you. I want to become completely functional myself, and I think that my AS diagnosis is preventing me from doing so in the right manner. You might be in the same boat.


So you know you're not NT, but you dont think you're AS. What do you think is preventing you from being NT.



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02 Aug 2014, 3:49 pm

whatisintegrity wrote:
Azereiah wrote:
I'm personally strongly considering challenging my diagnosis as well.

I was diagnosed as having Asperger's Syndrome when I was 11, and the negative symptoms were already fading. I'm 21 now, and all I have left are the non-linear thinking and the executive dysfunction.

I know that I'm not neurotypical, but I strongly doubt that I have AS.



You can overturn the diagnosis if you think that the treatments you're being crammed into aren't ideal for you. I want to become completely functional myself, and I think that my AS diagnosis is preventing me from doing so in the right manner. You might be in the same boat.


So you know you're not NT, but you dont think you're AS. What do you think is preventing you from being NT.

Also, what 'treatments' are you receiving?


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Nick22
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02 Aug 2014, 4:06 pm

I think you are right to want to challenge if you think you don't have enough substance and explanation. Particularly for some of the early diagnoses, presumably there should be some more recent substantive evidence to back it up - my gut feel is that the early years have got to be a bit "hit and miss" and therefore if you are doubtful now , it makes sense to revisit it now.



whatisintegrity
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02 Aug 2014, 7:03 pm

MrGrumpy wrote:
whatisintegrity wrote:
Azereiah wrote:
I'm personally strongly considering challenging my diagnosis as well.

I was diagnosed as having Asperger's Syndrome when I was 11, and the negative symptoms were already fading. I'm 21 now, and all I have left are the non-linear thinking and the executive dysfunction.

I know that I'm not neurotypical, but I strongly doubt that I have AS.



You can overturn the diagnosis if you think that the treatments you're being crammed into aren't ideal for you. I want to become completely functional myself, and I think that my AS diagnosis is preventing me from doing so in the right manner. You might be in the same boat.


So you know you're not NT, but you dont think you're AS. What do you think is preventing you from being NT.

Also, what 'treatments' are you receiving?


Me or Azeriah?



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02 Aug 2014, 8:25 pm

I think you should get another test done. Your right. maybe you really do not have it. Anything is possible and you know yourself more then anyone does. I had the test done in 1994, I'm sure if I had it done again the outcome might be different now. I have overcome many challenge's but I'm still not like other people I know. I know no other people who are autistic outside of Wrong Planet. Maybe I just have a bunch of mental health issues.


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02 Aug 2014, 9:04 pm

whatisintegrity wrote:
Me or Azeriah?

I guess my question was aimed at Azereiah - I apologise for the lack of clarity.

If you feel that your current situation is being hampered in any practical way by labels which were wrongly applied to you during childhood, then I guess it is probably worth seeking some kind of redress. But if you are mostly concerned with putting your own mind at rest, then I definitely wouldn't go back to yet more specialists in Autism for advice.


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whatisintegrity
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02 Aug 2014, 9:16 pm

MrGrumpy wrote:
whatisintegrity wrote:
Me or Azeriah?
But if you are mostly concerned with putting your own mind at rest, then I definitely wouldn't go back to yet more specialists in Autism for advice.


I have more information, but I want you to explain why you think this.

It definitely is a self esteem issue and I think such a brain structure (ASD) could really hinder the life I'm trying to set up for myself.



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02 Aug 2014, 10:29 pm

I was given a diagnosis late in life. It helped me in that it explained why I never seemed to succeed in certain areas of life. Social stuff was like trying to fit a large foot in a small shoe. Why I had and have a hard time with analogies. Religious ones were extremely hard. Have you seen the face of someone who has just said God told me and you ask via what media, or how did you know it wasn't just your own head voice? Girls were hard to deal with. People wondered why I didn't cry when mom died. Stuff like that were explained by the diagnosis.



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03 Aug 2014, 12:23 am

I think knowing is better than not knowing. Knowing would have helped me over the last 50+ years, and not knowing has certainly been a huge disadvantage.

They say, knowledge is power, but it depends what you do with that knowledge. I grew up thinking I was below average in every way, which led to all sorts of non-performance issues. Turns out I'm above average intelligence and I have a bunch of quirks, all of which could have been guided into a fulfilling life but were instead left in the neutral zone where not much goes on and allegiances are confusing.

But of course, Asperger's wasn't known when I was young, and I would not have fit the Autism spectrum of the time, so I was just a weird kid with a lot of self-esteem issues. The labels I got from that were not only exhausting and a blow to any self image I had, they were also very limiting. With that knowledge what else was I to become except the errant fool, the wannabe this or that, always compensating for things that I believed to be true about me. They WERE true, because everyone agreed that they were. Escaping labels is about as easy as escaping human contrivances - not easy at all - better that the labels are at least realistic and offer positive possibilities. Glass-half-full type of thing.

It does sound like you're 'over it,' all the doctoring and stuff. Best way to go from here is not to put pressure on yourself, but do what you need to when you are ready. Life is a journey, not a bunch of conclusions. I dislike chaos, but I've learned to embrace the bumpy ride.

(Gawd, now I sound like I'm preaching - but I'll resist the urge to edit.)


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whatisintegrity
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03 Aug 2014, 1:35 am

Nick22 wrote:
I think you are right to want to challenge if you think you don't have enough substance and explanation. Particularly for some of the early diagnoses, presumably there should be some more recent substantive evidence to back it up - my gut feel is that the early years have got to be a bit "hit and miss" and therefore if you are doubtful now , it makes sense to revisit it now.


Here's what is stated (in my own words) in one section of my iep reevaluation report which was conducted this year, in regards to explanations why there is support backing up an ASD diagnosis (after teacher scores were not supported of a possible diagnosis). However, there's a lot more going on than what is shown at the surface of my behaviors, and how the school environment I'm in makes me feel very uncomfortable for numerous reasons, which I'll explore into and dissect.

"when all input, parent and teacher ratings, and the details of ____'_ history are taken into account, there is much support"

-"Highly restricted and fixated interests (when he was young, he had an intense interest in weather reports; now shows an obsessive interest in his ASD diagnosis, as he gathers info in an attempt to refute)"
It wasn't a strict interest in weather reports, although it briefly started out with a general entertainment in stations like TWC which evolved into a full-fledged practically oriented interest in storms. I have borderline obsessive, negative feelings towards the idea of being autistic which motivates me to learn as much as possible about the phenomenon, and how it matches up with my psyche and my situation. And my interests have expanded in recent years, however I do feel a certain energy pushing me towards one or two specific ones in varying times in my life.

-"Demonstrates preference for solitary activities and reduced social interest in general. When required to work in a group setting, he has difficulty cooperating and maintaining an openness to other's ideas/contributions"
Yeah, this is overlooking my social anxiety in general. I'm not the type that would be a socialite, or chat random strangers up on the street taking the first initiative, but I'm definitely someone who does value socialization. I have no problem handling group activities and considering and entertaining other's ideas, but it's the fact that I feel so inferior, pathetic, uninteresting, and fear that my issues are being exposed when in a group setting, which causes me to put a heavy guard up.

-"Seems unaware of other's needs and doesn't express empathy appropriately"
Bounced off of the withdrawal on the surface, and social anxiety. I am aware. I might be distracted because of the heavy turbulence of feelings, thoughts, and ideas swirling inside of me. Raging, really. I definitely realize why certain people react a certain way because of certain morals and values implemented by other members of society, and how everyone percieves and reacts to certian things differently; regardless of whether or not I agree with it. I spent time in a group therapy program after spending a week in inpatient hospitalization. Staff members and other patients there observed that I was empathetic and seemed very compassionate.

It should also be noted that while not the ideal environment, the group therapy program was an environment more comfortable to me compared to my private school environment, which is why it was probably easier to let my guard up and express myself more.

-"Struggles with pragmatic aspects of language. (he has difficulty understanding slang expressions, and humor. He attaches concrete meanings to words and phrases, and sometimes misuses words)"
As a kid there are reasons (though vague) stated in a report I retrieved, observing my behaviors as an 11 year old. I don't remember how I perceived things like this as a kid, but now, I'm generally okay with this. At least I think, and I'm judging logically and applying objective standards to these observations as well. I don't have difficulty understanding slang, and humor. My concrete attachment might sometimes have to do with my tendency to dissect anything into it's core parts, or having attention issues because of internal turbulence (daydreaming, drifting off into space).

-Difficulty with planning and organizing tasks, requiring very specific directions to tasks, and when he is confused he doesn't ask for clarification. If he's not certain about the requirements of a task, he quickly becomes frustrated and often expresses his frustration inappropriately.
If anything, this has to do with internal turbulence, ADHD, and anxiety over whether or not I will make a fool out of myself, or screw the pooch. I might not ask sometimes because I fear that it is a stupid question. This is especially true when there are other people around. If becoming frustrated is shutting down internally and stepping back, replaying what just happened and how I performed, contrasting that with other possible situations and thinking about how other people I value might perceive my screwup, and overthinking my feelings - then yes, I get frustrated. If making mild self deprecation remarks in a neutral fashion while supressing my emotions, stepping back (internally), and very rarely, hiding behind sarcastic comments when feeling overall threatened in an attempt to make myself feel better/rationalize my negative self-consciousness and emotions - then yes, I express my frustration inappropriately.

IEP and re-evaluation reports sometimes have their flaws. But it still fuels my self-doubt. Maybe I'm wishful thinking.



Nick22
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03 Aug 2014, 2:34 am

Is it going to be feasible to get an independent second opinion/diagnosis?