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Dan_Undiagnosed
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06 Jul 2019, 3:11 am

Well I've finally gone and gotten tested. It's taken over a month and included a personal history interview, an autism questionnaire interview and then an IQ/cognition test.
I could tell that my specialist was leaning towards some sort of anxiety disorder or an anxiety disorder plus autism. So her official diagnosis today was generalised anxiety disorder and most likely no autistic spectrum disorder. She showed me a triangle of the 3 factors I would need to classify as autistic.
In social communication and language development she said it was a no because my Mum told her I developed language at 12 months or even a bit earlier and spoke very clearly but then went selectively mute until about 18 months. But that very selective use of language has stayed with me until today.
In social and emotional interaction she said I 100% ticked the box for autism (but also social anxiety and that the two are often overlapped).
And I was kind of hit and miss with imagination and flexibility of thought. I did use my imagination during childhood play and I'm apparently very creative. And while she did see some rigidity of thought there was also some level of flexibility. So she said that one was kind of a grey area.

To be honest it doesn't feel too bad. She was very open about her theories during the whole process so I had time to get used to the idea of not being autistic after wondering and ticking boxes for nearly a decade. Don't get me wrong, I kind of invested in it emotionally and let it form part of my sense of self but most of that was probably just out of relief at finding a condition that made a lot of things make sense. And it's been really amazing getting to talk to people here since I've joined. I don't think I'll be going anywhere. Even when I first joined this site I knew it wasn't just for people with an ASD. So I hope you guys are still welcoming of another anxious non-NT :D

What's going to be harder to accept and reconcile was the results of the IQ/cognition test. I went into it thinking I'd be maybe above average in some areas (I've always been told I'm good with art and writing/being creative in general) but then I was really worried I'd be below average, maybe even well below average, with things like short term or working memory because I feel like a damn goldfish sometimes. But that all that would average out to being around average, maybe even a little above average. This would also make the most sense because I consistently got good grades in art and writing in school but average to below average in everything else.
I won't give what I think the exact score was (I forgot exactly and she hasn't emailed me the final report yet) but yeah, turns out it's in the "gifted" range. In mental processing speed in particular I was above 99% of the population. I just don't get it. She could tell I probably wasn't enthusiastic and she said something like "well I think that this is at least some good news today" and I tried to explain, yeah it's great news but I just don't feel it. I just doesn't seem right. So despite everything I'd assumed about myself over recent years, I'm not autistic but I am well above average in intelligence. How can a 35 year old man not know themselves properly to this extreme? And why didn't I do well in school?
She told me that for someone in my mid 30's it wasn't that uncommon for things like this (anxiety, giftedness) to go under the radar back then. Especially given that I was a quiet student and so I just didn't give my teachers any trouble. If both had been picked up I'd have been given CBT for anxiety and a special education for giftedness. She did say that hopefully being aware of this intelligence now inspires me to use it in some way. I'm hoping that will happen but I'll probably be a little annoyed and regretful at nearly half my life going by without knowing any of this. But I can definitely see how this is good news overall. I'm a little sad to know I'm not on the same spectrum as many of you awesome people but I'm hoping with a better understanding of myself I can move forward to better things :)



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06 Jul 2019, 3:20 am

Don't let the door hit you on the way out. :mrgreen: :wink:


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06 Jul 2019, 4:19 am

Wish you well! Maybe you can find something to do with your newly discovered abilities!



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06 Jul 2019, 4:43 am

Maybe, you are not diagnosed with Asperger's but you still may be on the spectrum with Asperger traits.


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Mountain Goat
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06 Jul 2019, 5:14 am

It is interesting. From what you've said though, there must be similarities witn anxiety and autism. I spoke tree words I copied from the TV at a very early age but I then didn't speak at all until about the average age for learning to speak. Something I have known from childhood all the way up to my adulthood is that I am very clingy to my Mum and she is actually quite clingy to me. Not in a way that I couldn't transfer my clingyness to a future wife... Since doing some research into faceblindness (Prosoprognosia) which my Mum and I get, along with mirror blindness where I, and my Mum both had to really learn which side of the reflected image is which... As it didn't come naturally... I found out that a common trait of prosoprognosia is what I get, in that in school I was very quiet and always homesick. Yet at home I would open out a bit more and regain my confidence. Aparently this is due to the faceblindness... As I am struggling to make sense of peoples faces and at home it is easy as I expected to see my parents there and my brother etc... It is a type of fear... Umm. How can I explain... Ok... Here is an explanation. When I was a teenager, I had my own beautiful cat. She was very clingy to me and we got on soo well together. The other cats would do their own thing, but my cat would usually be with me or somewhere nearby. She was a tortoise shell cat with little white front paws. Now I had a fear (I know that the Lord will soon sort this out when I get there) that when my lovely cat dies and goes into Heaven and I also get there, I may lose her in amongst hundreds of other tortoise shell cats and not be able to pick her out! That is an example of prosoprognosia and how it effects people.
As a child and also as an adult, I am always very concerned that I know where my mother is if she goes shopping. I try to stay close to her. Why? Because if we should seperate, and I lose track of where she is, the chances of finding her in a sea of people are slim, and as she also gets the same issue she may struggle to find me too! This is probably the main reason why we tend to be clingy. It is to make sure we don't lose each other in a crowd.
My Mum had a hillarious shock once. She had been dating my Dad for a while and they were certainly an item. My Mum saw him when she was shopping at a neighbouring village so she went up and kissed him... Only to find out it was not who she thought it was... And not only that, the guy who she kissed was someone who my Dad did not get along with as they had both had a fight in their teenage years! The poor guy felt very awkward too as he didn't want any trouble either! Things like that are typical of living ones life witn faceblindness. (It was following a youtube link where I saw that there was a strong link between prosoprognosia and the autistic spectrum).
Question... Just out of curiosity. Did you have people come up to you and tell you that they thought you had asperges or autism? Or did you believe you may have it because of how you felt and reacted in daily life? Also, anxiety... Is it something you have always had?


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Mountain Goat
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06 Jul 2019, 5:16 am

justkillingtime wrote:
Maybe, you are not diagnosed with Asperger's but you still may be on the spectrum with Asperger traits.

That was my gut feeling due to his description... But it could be anxiety that shares some traits... The great thing is he now knows what it is which will be a huge step forward to knowing how to cope or treat the issues.

Thanks so, so much Dan for shareing. I am waiting an assessment myself. It could be I have anxiety too, but trying to unravel feelings is not easy! It was only about two or three years ago from something my mother once said that I discovered I get stressed. Doctors used ro ask me "Are you anxious?" and "Are you stressed" which I would say no as to be honest, those two feelings can be hard to define? Other feelings like worry and fear and nurvous and anger etc.. I know them. But for me, to try to further seperate feelings into descriptions ain't that easy! Haha, I can feel things bery strongly.. So stronngly at times I am almost passing out. But to identify them... Not always something I can do. But there again. Everyone gets this at times. :)


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Dan_Undiagnosed
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06 Jul 2019, 5:30 am

Thanks everybody for replies, well wishes etc. Mountain Goat, I can see how that would be concerning, you and a loved one who both have face blindness potentially losing each other in a crowd!

Mountain Goat wrote:
Question... Just out of curiosity. Did you have people come up to you and tell you that they thought you had asperges or autism? Or did you believe you may have it because of how you felt and reacted in daily life? Also, anxiety... Is it something you have always had?


The main examples I remember are my older brother saying things like "You're really smart but also dumb at the same time", a former boss told his girlfriend (who then told my girlfriend) "Dan is too smart to be doing this kind of work but too dumb to do anything about it" and also a former friend who at one point wanted me to be a musician with him as my manager said "You're one of those stupid geniuses" and he explicitly told me to get tested for an ASD. That was back around 2011? I think I started researching then myself and saw a lot of things that made sense. That's around the time I also joined WP. But now I guess I can see my therapist's point, about how some important things don't line up. Some of her major concerns with diagnosing an ASD were;
-I gestured while young (pointing for things I wanted, also a sign of selective mutism)
-I demonstrated imagination during play and would take things I'd made from lego to show my Mum (she seemed adamant to uphold the rigid stereotype that autistic people lack imagination! And she said autistic kids don't show things to parents/guardians, their interests and achievements are kind of private and kept to themselves?)
-I had no language delay (the 6 month of mutism was, again, probably selective)
These were the main ones that I can remember. And yeah I guess now that I understand that anxiety can be low level but constant, I always have been self conscious and a real worrier even as a kid.



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06 Jul 2019, 5:41 am

I may call you Dan_Diagnosed :P
Is fascinating.. I may find I have the same as you. I just don't know. Did you get shutdowns? This is the main reason what I have been trying to trace for all these years. I called them energy loss as I would suddenly go weak and limp and would usually end up on the floor! Had these from about the age of six or seven onwards. (Having to correct my typing as I kept hitting the wrong letters!)
I believe them to be partial shutdowns. If they are not, then I am back to square one again. :(


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kraftiekortie
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06 Jul 2019, 6:06 am

It doesn’t mean you can’t be a member here.

There are many folks here who are “officially NOT autistic.”

You might have been PPD-NOS under the DSM-IV.



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06 Jul 2019, 6:27 am

Having a autistic personality traits, social communication issues, anxiety, etc ... is still a burden. The good news is that you are gifted and can use your talents to make changes in your life. You should be extremely pleased with yourself. You had the courage to go for an evaluation and accept the results. I hope we can hear how you are progressing and overcoming the obstacles of modern life.


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06 Jul 2019, 6:43 am

The "autism triangle" seems a bit odd to me.
I thought, Asperger's Syndrome is all about autism with (more or less) "normal" language development.
On the other hand, the triangle does not give any thought to sensory issues.

With 100% autistic social profile and no other autistic traits, I would guess the Social Communication Disorder would be the fitting diagnosis.


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06 Jul 2019, 6:50 am

Dan_Undiagnosed wrote:
But now I guess I can see my therapist's point, about how some important things don't line up. Some of her major concerns with diagnosing an ASD were;
-I gestured while young (pointing for things I wanted, also a sign of selective mutism)
-I demonstrated imagination during play and would take things I'd made from lego to show my Mum (she seemed adamant to uphold the rigid stereotype that autistic people lack imagination! And she said autistic kids don't show things to parents/guardians, their interests and achievements are kind of private and kept to themselves?)
-I had no language delay (the 6 month of mutism was, again, probably selective)
These were the main ones that I can remember. And yeah I guess now that I understand that anxiety can be low level but constant, I always have been self conscious and a real worrier even as a kid.


My ability to gesture emotionally and informationally was apparently normal in my assessment, I have an active imagination (maybe overly imaginative-I have had issues with maladaptive daydreaming)-I loved playing really elaborative make-believe games as a kid-and I had no language delay (I think my first word was around 11 months). I'd say I don't always tell my mum/other people things, I definitely don't share as much as your average person (I very rarely call my mum just to catch up for example and tell her what's going on in my life), but I do share when it is something I am particularly excited/happy/sad about (especially when its my 'special interests', I want to tell everyone about them) and I know you're meant to share things in some situations, like when someone asks you how your weekend is it's good to say a couple of things that you did and not just go 'fine'/'good'/'okay' so I make an effort to do that.

And I have an ASD diagnosis (in fact I met the criteria for every part of it). So those things alone aren't necessarily reasons why you aren't autistic if they're isolated examples and there are enough other things in contrast that do point towards autism. It does sound like the specialist was very rigid. Not having a few specific traits (or not showing particular traits in specific ways-for example, the bit about sharing is part of the criteria of problems with 'social-emotional reciprocity' which includes 'reduced sharing of interests and emotions', but reduced doesn't have to mean no sharing at all) doesn't necessarily rule out autism. It should really be about whether you show enough traits to meet the diagnostic criteria, not about what traits you don't have. Maybe they're right, but it might be worth taking a closer look at the report when you get it.



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06 Jul 2019, 8:20 am

Dan_Undiagnosed wrote:
In social and emotional interaction she said I 100% ticked the box for autism (but also social anxiety and that the two are often overlapped).

Would be enough once you have an Asperger Syndrome only where your emotional interaction and the different way of thinking is the problem. Selective mutism is mostly an anxiety disorder related. Beside of this there are some people who only want an ASD diagnosis as an excuse for misbehave even towards themself. For this I think it's better not to rely on a diagnosis but always try to improve yourself instead.


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06 Jul 2019, 9:09 am

Dan_Undiagnosed wrote:
Well I've finally gone and gotten tested. It's taken over a month and included a personal history interview, an autism questionnaire interview and then an IQ/cognition test.
I could tell that my specialist was leaning towards some sort of anxiety disorder or an anxiety disorder plus autism. So her official diagnosis today was generalised anxiety disorder and most likely no autistic spectrum disorder. She showed me a triangle of the 3 factors I would need to classify as autistic.
In social communication and language development she said it was a no because my Mum told her I developed language at 12 months or even a bit earlier and spoke very clearly but then went selectively mute until about 18 months. But that very selective use of language has stayed with me until today.
In social and emotional interaction she said I 100% ticked the box for autism (but also social anxiety and that the two are often overlapped).
And I was kind of hit and miss with imagination and flexibility of thought. I did use my imagination during childhood play and I'm apparently very creative. And while she did see some rigidity of thought there was also some level of flexibility. So she said that one was kind of a grey area.

To be honest it doesn't feel too bad. She was very open about her theories during the whole process so I had time to get used to the idea of not being autistic after wondering and ticking boxes for nearly a decade. Don't get me wrong, I kind of invested in it emotionally and let it form part of my sense of self but most of that was probably just out of relief at finding a condition that made a lot of things make sense. And it's been really amazing getting to talk to people here since I've joined. I don't think I'll be going anywhere. Even when I first joined this site I knew it wasn't just for people with an ASD. So I hope you guys are still welcoming of another anxious non-NT :D

What's going to be harder to accept and reconcile was the results of the IQ/cognition test. I went into it thinking I'd be maybe above average in some areas (I've always been told I'm good with art and writing/being creative in general) but then I was really worried I'd be below average, maybe even well below average, with things like short term or working memory because I feel like a damn goldfish sometimes. But that all that would average out to being around average, maybe even a little above average. This would also make the most sense because I consistently got good grades in art and writing in school but average to below average in everything else.
I won't give what I think the exact score was (I forgot exactly and she hasn't emailed me the final report yet) but yeah, turns out it's in the "gifted" range. In mental processing speed in particular I was above 99% of the population. I just don't get it. She could tell I probably wasn't enthusiastic and she said something like "well I think that this is at least some good news today" and I tried to explain, yeah it's great news but I just don't feel it. I just doesn't seem right. So despite everything I'd assumed about myself over recent years, I'm not autistic but I am well above average in intelligence. How can a 35 year old man not know themselves properly to this extreme? And why didn't I do well in school?
She told me that for someone in my mid 30's it wasn't that uncommon for things like this (anxiety, giftedness) to go under the radar back then. Especially given that I was a quiet student and so I just didn't give my teachers any trouble. If both had been picked up I'd have been given CBT for anxiety and a special education for giftedness. She did say that hopefully being aware of this intelligence now inspires me to use it in some way. I'm hoping that will happen but I'll probably be a little annoyed and regretful at nearly half my life going by without knowing any of this. But I can definitely see how this is good news overall. I'm a little sad to know I'm not on the same spectrum as many of you awesome people but I'm hoping with a better understanding of myself I can move forward to better things :)



Two things that puzzle me about what you have put. One thing about the learning to speak at a young age. Many on the spectrum do learn to speak at a young age. While many do not. The ones that speak at an early age are more likely to be classified as asperges (Under the old terms) and the ones who were delayed were more likely to be classed with autism. I am only picking up on what people have said when they talk about it, as I looked up lots and lots of Youtube videos about the subject... (I am no expert... Just listen to others). Also they said about I.Q. where those with higher then average were more likely to be diagnosed with asperges and vice versa.
Something else puzzles me. You mentioned she said that those on the spectrum generally do not try to share their hobbies. From what I have picked up it is the opposite, where if you find someones special interest, you try stopping them wanting to show everyone about their hobby! They try to convert everyone to their hobby! (If I am diagnosed with autism, then this is definately me! I am always bringing in trains into the conversations and seem to do it so I can try to relate to non train related conversations!)


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06 Jul 2019, 9:11 am

Dan,

You sound a lot like me. I have never been formally diagnosed, but scored 28 on the AQ test online, placing me in the category of "Broad Autistic Phenotype" on the borderline of NT/AS. I do have some core Asperger traits: intense and unusual special interests, anxiety and occasional panic attacks.



magz
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06 Jul 2019, 10:12 am

IstominFan wrote:
Dan,

You sound a lot like me. I have never been formally diagnosed, but scored 28 on the AQ test online, placing me in the category of "Broad Autistic Phenotype" on the borderline of NT/AS. I do have some core Asperger traits: intense and unusual special interests, anxiety and occasional panic attacks.

I tend to score AQ 34-35 but I don't have an official diagnosis, either...
First of all, I don't pursue it - I have been very officially and "scientifically" misdiagnosed with schizophrenia and given completely wrong treatment, so I don't really trust the diagnostic criteria.
Second, the DSM diagnostic criteria for autism are based on "support required" which does not work well on individuals with extensive coping strategies. I don't need much support because of my autistic traits themselves, I need support because of exhaustion from employing coping strategies all the time. That actually fits the "female type Asperger's". I remember Tony Attwood saying - "imagine solving Math problems all day. That's what they do." I get the support for it based on my depression diagnosis and I don't really give a damn if the diagnosis itself is correct.

I employed a pragmatic approach: whatever helps me is okay, whatever harms me is wrong. Schizophrenia diagnosis was wrong because antipsychotic medication impaired my functioning even further and... it made my autistic traits more obvious (which then reinforced the misdiagnosis :/ ). After switching them to antidepressants, I got back to my previous functioning. So my depression diagnosis is allright, even if it doesn't really explain my experiences.

ASD-related terms fit better my experiences - especially sensory issues, shutdown, meltdown and burnout. My very strong autistic trait is inability to see things in contexts, for me everything appears on its own and I need to really focus to take other information into account to simulate a context other people seem to take for granted.
None of the above is in the DSM5 criteria.

So, with my high AQ and strong autistic traits, I don't fit the criteria for an official diagnosis. Funny. But whatever, I'm sure the research on autism has still really a lot to do.


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