Could I have an incorrect diagnosis/comorbidity?

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themetamorphosis
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01 Mar 2014, 8:51 pm

Hi,

I'm diagnosed with ADHD and have been trying to work through my issues with the help of stimulants. I joined an ADHD forum and whilst everyone else on there seems to think they've found their home and are so glad they finally it in I don't feel like I have a lot in common with them except in terms of symptomatology.

I've always felt an understanding when reading about the experience of people with Aspergers and my niece is diagnosed. This forum often pops up on Google when I'm searching some aspect of my personality.

I've taken many online tests over the years which put me on the spectrum but I don't fit the DSM criteria. I thought I'd post here to see if anyone can understand my experience as I read a document written a psychologist that states the DSM is too narrow.

Ever since I can remember I've been an outsider. I found a few people in my life that I can be comfortable around but even with them after an extended period of being apart I feel like we're strangers and put up my normal barriers again and have sank further into isolation.

My behaviour often confuses and annoys and I rarely notice. I find it hard to deal with how people will just pretend like you're behaving normally when you're talking to them and that ruins my ability to analyse if I'm behaving properly as I always have ot fake it. I can't really be myself and find myself adjusting my personality depending on who I talk to and I find myself exhausted having to maintain this facade for too long.

My main issue socially is that my head is always spinning with ideas that I can't really convert easily to speech and this is compounded by the fact that I feel my starting point for any idea is so far removed from how everyone else perceives the world that I don't even know where to begin and I think I'd have to start from a completely differentpoint before aanyone could even conceive where my idea is coming from.

I can't do smalltalk and get anxious if I get stuck in a situation where it's expected. So all I really want to talk about is my ideas and I can't do gthateeither.

Rather than the typical ASD trait I've read about of having an all consuming interest. I jump from thing to thing researching everything I can before the desire just suddenly leaves me and I move on to the next thing. I can never maintain a hobby but have certain things I always come back to like Physics and Linux.

I don't have any of the repetative movements mentioned in the DSM but when I was younger I always had to pull back the skin beneath my fingernails and at the sides of my eyes and now only constantly brush my eyebrows with my fingers against the grain often to the point of it becoming painful.

I don't really crave routine and like travelling and doing new things and I feel the pain of others a lot although this is more in a general sense through stories I hear etc rather than people I know.

Lots more I wanted to type but it's getting late. I'll try to update tomorrow. Apologies for any typos I'm writing on my phone and the cursor is bouncing all over the place.

Any responses appreciated.



Sethno
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01 Mar 2014, 9:39 pm

The seeming lack of the traditional "special interest" thing could be okay, since you're thinking textbook and in reality not all high functioning autistics or Aspies show all the symptoms or show them in the same ways.

There's a saying-
If you've met one Aspie, you've met one Aspie. Only one.

I'd say find someone with a true background in autism and get yourself evaluated.

Be open with the person. Explain the research you've done, why you feel you're on the spectrum, what tests you've taken, etc.

Again, make sure they specialize in autism and are not a generalist. Using a generalist is just asking for trouble.

Oh...

There does seem to be an overlap or connection between ADHD and autism. Both can run in the same families, diagnosed autistics can also be dealing with ADHD, etc.


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dianthus
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01 Mar 2014, 10:55 pm

themetamorphosis wrote:
I joined an ADHD forum and whilst everyone else on there seems to think they've found their home and are so glad they finally it in I don't feel like I have a lot in common with them except in terms of symptomatology.


I never have felt comfortable in any ADHD forums. I can relate to some of the things people talk about, but I feel like the people are very different from me in some way I can't explain.

I figured out I had ADHD when I was 17 and was officially diagnosed 6 months later. It explained a lot but never fully explained my differences from other people or my difficulties. Now I realize I have a lot of autistic traits. I'm just not sure which traits are the most impairing for me, or which diagnostic label would sum them up the best.

I think part of the problem in trying to identify what we are, is that the experts haven't fully sorted out what all these different disorders and syndromes are yet. Diagnosing symptoms is highly interpretative and subjective. ADHD may be an umbrella category for more than one type of disorder. They are recognizing now that some people with the inattentive subtype can be classified as having SCT (sluggish cognitive tempo) and this is most likely a separate disorder rather than a subtype of ADHD.

Then there are the people with ADHD who have co-morbid ODD or conduct disorder, with antisocial or criminal behavior. That also may be a completely separate disorder. I don't relate to those people at all.

I fit the profile of SCT pretty well, as I've never been particularly hyperactive, I'm generally more hypoactive and sluggish, and I'm very reclusive and introspective and not highly excitable. But even though I tend to be very sedentary, I still have the motor impulsivity of ADHD, and I can get in a hyperactive state when I am hyperfocused on something.

I don't fit neatly into any one category, or I should say, I don't fit the stereotypical presentation of any one disorder. What I have seems to be an amalgamation of many different things. Which is why autism ultimately makes the most sense for me. But I figure I have PDD-NOS, or atypical autism.



DevilKisses
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01 Mar 2014, 11:11 pm

dianthus wrote:
themetamorphosis wrote:
I joined an ADHD forum and whilst everyone else on there seems to think they've found their home and are so glad they finally it in I don't feel like I have a lot in common with them except in terms of symptomatology.


I never have felt comfortable in any ADHD forums. I can relate to some of the things people talk about, but I feel like the people are very different from me in some way I can't explain.

I figured out I had ADHD when I was 17 and was officially diagnosed 6 months later. It explained a lot but never fully explained my differences from other people or my difficulties. Now I realize I have a lot of autistic traits. I'm just not sure which traits are the most impairing for me, or which diagnostic label would sum them up the best.

I think part of the problem in trying to identify what we are, is that the experts haven't fully sorted out what all these different disorders and syndromes are yet. Diagnosing symptoms is highly interpretative and subjective. ADHD may be an umbrella category for more than one type of disorder. They are recognizing now that some people with the inattentive subtype can be classified as having SCT (sluggish cognitive tempo) and this is most likely a separate disorder rather than a subtype of ADHD.

Then there are the people with ADHD who have co-morbid ODD or conduct disorder, with antisocial or criminal behavior. That also may be a completely separate disorder. I don't relate to those people at all.

I fit the profile of SCT pretty well, as I've never been particularly hyperactive, I'm generally more hypoactive and sluggish, and I'm very reclusive and introspective and not highly excitable. But even though I tend to be very sedentary, I still have the motor impulsivity of ADHD, and I can get in a hyperactive state when I am hyperfocused on something.

I don't fit neatly into any one category, or I should say, I don't fit the stereotypical presentation of any one disorder. What I have seems to be an amalgamation of many different things. Which is why autism ultimately makes the most sense for me. But I figure I have PDD-NOS, or atypical autism.

Even though I'm more ADHD than autistic I fit in better on wrongplanet. The ADHD forums seem to be boring compared to wrongplanet. All they seem to talk about in the ADHD forums is medication. I've never been on medication so those posts mean nothing to me.


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Tahitiii
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01 Mar 2014, 11:32 pm

themetamorphosis wrote:
…Ever since I can remember I've been an outsider. I found a few people in my life that I can be comfortable around but even with them after an extended period of being apart I feel like we're strangers and put up my normal barriers again and have sank further into isolation.

My behavior often confuses and annoys and I rarely notice. I find it hard to deal with how people will just pretend like you're behaving normally when you're talking to them and that ruins my ability to analyze if I'm behaving properly as I always have to fake it. I can't really be myself and find myself adjusting my personality depending on who I talk to and I find myself exhausted having to maintain this facade for too long.

My main issue socially is that my head is always spinning with ideas that I can't really convert easily to speech and this is compounded by the fact that I feel my starting point for any idea is so far removed from how everyone else perceives the world that I don't even know where to begin and I think I'd have to start from a completely different point before anyone could even conceive where my idea is coming from.

I can't do small talk and get anxious if I get stuck in a situation where it's expected. So all I really want to talk about is my ideas and I can't do that either...
That all sounds so familiar.
Personally, I don’t care whether I fit the DSM definition. I’m self-diagnosed and happy with it. It helps me to make sense of the world. There’s no point in telling anyone about it, since no one knows what it means and it will only confuse them. If it ever comes up, I can say that I’m not good at xxxx (whatever little glitch I get stuck on and needs an explanation) but giving it a name only freaks people out.

Do you need the diagnosis for some concrete reason? Disability, or to get into some particular program?

Thanks, “Dianthus,” for the new phrase, “sluggish cognitive tempo.” I definitely need to look that up.



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01 Mar 2014, 11:47 pm

I didn't and can't read your post, at the moment, but as a comment... what Tahitiii said.

Hard fact, sometimes it is eaiser to go with the comorbid, then the aspie. Tahitiii didn't say that, I did.


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themetamorphosis
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02 Mar 2014, 5:46 am

Thanks for the replies they've been really helpful. I woke up this morning and was half awake and had this semi dream where I was reading the responses. Then I actually woke up and first thing I done was open the page and was surprised to see anyone had responded. On the other forum I'm a thread killer, I say something a bit out there and then for some reason no one else ever responds.

I'm not really interested in getting am ASD diagnosis unless there's some specific way it can help me. I just want to know where I fit in so I can try and resolve my anxieties myself.

I've found myself where I am now because I got to 30 and I've come a long way in that time with regards to increasing my confidence and becoming more assertive, I've got a responsible job and can just about provide for my family in the context of my ideal of the right way of doing that. But I can't really connect with anyone and as I slowly lose the only friends I've ever really had that are from my childhood I look at my father who is just retired and has nothing else in life but the work he's just given up and need to do something to prevent that happening to me.

I always thought I just had social anxiety but again in those forums whilst I could relate to the symptoms and feelings I couldn't relate to the mindset. I now wonder whether social anxiety is something that can actually exist in isolation when it has been consistent and all pervasive. I didn't seek treatment for that partly due to shame and mainly due to the inefficacy of the treatment for it.

I then started to really analyse myself and take note of the things I was doing. A big problem was being able to recall words and events. My difficulty with conversation was massively compounded by jot being able to bring up the right words and formulate the sentences that seemed so clear in my head. I'd put words in the wrong order and often forget what I was saying or even thinking mid stream.

I only sought the ADHD diagnosis because the treatment actually anecdotally seemed to be very effective. The medication has cured the above problem but it's also made me more aware of my fundamental difficulties. It helped massively also with my organisational problems but they're not really my main concern.

The main thing that got me down about the ADHD forum is that nobody else seemed to feel gifted. They felt ill and that they needed to be cured and that they had a simple deficiency that when eradicated would make them exactly like everybody else. I feel that whatever makes me what I am is a fundamental difference that can only be masked, but I'm proud of who I am and wouldn't take a pill that would rid me of my unique perspective on the world (which seemed to be what Strattera was trying to do without me even noticing).

I feel my brain is an anachronism rather than defective. This society is created in a way that demands and values only a narrow set of skills and traits and fails to take notice of the huge number of people it alienates and tries to force them to adapt rather than letting them have a place in society like I believe they should and could. I will adapt, but only far enough for my own wellbeing and to relieve my own anxieties.

Postpaleo, why do you say 'it's easier to go with the comorbid'? I'm also wondering if your username might be an indication that you feel the same about me as to the origin of your perception?



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02 Mar 2014, 6:45 am

my user name? Been using it for a while, some kind of reminder to what I once did, when I was happy. It really hasn't a lot to do with anything here, I think I did it years before, but can't even swear that's true. I coined it, but I sort of remember why and when and it wasn't here.

The reason I brought up comorbid, it seems after reading a huge amount of troubles, getting apsie even dx'd and considering it often gets confused, I think, with other things, go the other things, go with that flow, so what. Let the AMA call it what they think and don't fight it anymore, if and a big if, that's what you need to get by. Don't argue, which has always been the damn thing with them. Argue with them, ty to make a point and they'll pin 10 more initials after your name. Depends on how you feel, what you might be looking for. if anything, not my call, just sayin. If it gets you closer to what you need to get by. go for it. Work the system.


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postpaleo
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02 Mar 2014, 6:57 am

Funny, I've used postpaleo for so long, I think people should know me, no really, surprised I don't slip and say it when I'm meeting someone on the street.

My name is Alan, kind of funny to see it here, but it is and I answer to it, among other things :lol:


As I am now recalling, I used J Fred Muggs as a handle first, on the web, look that one up and see how you feel. lol

I miss the alt board days, I really do

One needs a hero and J Fred was mine, f*****g sue me.


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dianthus
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02 Mar 2014, 12:20 pm

themetamorphosis wrote:
The main thing that got me down about the ADHD forum is that nobody else seemed to feel gifted. They felt ill and that they needed to be cured and that they had a simple deficiency that when eradicated would make them exactly like everybody else.


I noticed that too and disliked it very much, and like DevilKisses said all they do is talk about medication. I don't take medication and don't feel that I need to so I can't relate.

Quote:
I feel that whatever makes me what I am is a fundamental difference that can only be masked, but I'm proud of who I am and wouldn't take a pill that would rid me of my unique perspective on the world (which seemed to be what Strattera was trying to do without me even noticing).


I agree and feel the same way. I tried Ritalin back when I first self-diagnosed and I didn't like it. It felt like it changed my thinking from circular to linear. I felt really bored taking it and couldn't entertain myself with my own thoughts the way I normally did. It was a revelation because it did help me concentrate and listen better so it showed me how I was different from other people. And I decided I'd rather be the way I am naturally.

Quote:
I feel my brain is an anachronism rather than defective. This society is created in a way that demands and values only a narrow set of skills and traits and fails to take notice of the huge number of people it alienates and tries to force them to adapt rather than letting them have a place in society like I believe they should and could. I will adapt, but only far enough for my own wellbeing and to relieve my own anxieties.


Same for me.



themetamorphosis
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02 Mar 2014, 6:01 pm

Postpaleo, I'm not after a dx, just to find out where I fit in. For years I've been theorising about myself and society and to join those up I need to know more about myself and I've realised that I can't necessarily analyse the things I do by myself and only realise something that may be unconventional in myself when I relate to other people's stories of how they behave.

Dianthus, I'm currently in the process of titration on the last of the ADHD meds available where I live. I will continue to take one if only to combat the word recall problem I have, which I can achieve on a low dose. I understand what you're saying about the ADHD forums being all about medication, but it does seem to be very effective for those whose main problems are organisational. I could relate to those experiences, but not to too much else.

I'm loving this forum and have been glued to it all day. The threads are all really interesting and I love the stream of constant theories on things that continuously pop up. That's what I'm doing, constantly analysing and theorising.

Although I can't always completely relate with some who are further along the spectrum than I may be, I can always see the thought process and understand where they're coming from.

I've finally found my planet. Aspie or not, I'm staying.

The forum software is annoying though. It makes my phone go crazy and it's sloooow. Can it be accessed through an android app at all?



themetamorphosis
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02 Mar 2014, 6:08 pm

Took the Aspie quiz again.

Your Aspie score: 141 of 200
Your neurotypical (non-autistic) score: 78 of 200



themetamorphosis
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02 Mar 2014, 6:08 pm

Took the Aspie quiz again.

Your Aspie score: 141 of 200
Your neurotypical (non-autistic) score: 78 of 200