Monday, November 29, 2010

The Ex "Doesn't Believe It" (Asperger's) And Denies Son Might Have It

Yep

The ex "talked to some people who know about these things" (my kids tell me).

And she doesn't believe I have Asperger's or NVLD.

And she doesn't believe son has it.

Because if he did, he'd use it as an excuse to "be lazy". So she doesn't believe it. Because all he has to do is work harder and any issues he has will go away.

Or so the kids tell me about her reaction.

I'm going to go for supper with son if he's available and find out what the hell.

I expect she talked to her sister, who has an education degree, but works as an admin officer at the school board, and her mother (hat tip to Smitten for that piece of analysis) and they decided son doesn't have it and that its just laziness and an excuse. And that the ex is flat out lying about having talked to "people who know". Because that's her pattern. Talk to the family, get their sense of things, and then attribute it to "experts".

Bizarre

She was 100% in favour of getting son tested until he told her about my diagnosis and discussed with her him getting tested.

She was pushing him to get tested before I was done my testing and saying she'd pay for it all. She has said since he was little that there was something odd about that boy (which we have always agreed on). He has a funny gait/run. He doesn't give a shit what anyone else thinks. He's highly argumentative. Not aggressive/pushy/mean, but always demanding and needing to be right. We both agreed he was odd for his whole life.

And then all of a sudden - no. He doesn't have it. And it's laziness. That's how/why Smitten suggested it was from the family, not the ex's own ideas.

Fuuuck...

What a dumbass

Some interesting Autism/Asperger's videos and links

Exploring the subject. Because I am pretty sensitive about the outcomes of being labelled different (you've all read about bits and pieces of my childhood) i want to underline that other than being a little nerdy in person, I am not as obvious as some of the folks in these videos.

I fear being labelled. I fear the results of being labelled. I am not a cliche or stereotypical case. I fear you, my friends, some of whom haven't ever met me in person, will think less (or substantially differently) of me because of the label/diagnosis.

i am funny and engaging and warm - i am very different from the cliches. i want to be me.

one of the counsellors here at the clinic talked to me about labels (her son has non-verbal learning disorder [NVLD]) and about being pigeonholed. i have found that i am worried about those labels. i thought i wouldn't be.

i was enthusiastic about my impending diagnosis. i was looking forward to it. i was counting the days. and then my sister reacted the way she did. and all my courage and liberation fell away and i ended up back to being frightened of who i am.

Smitten reminds me that the reception has been benign and/or positive from pretty much everyone other than my family - and that i need to take the time to internalise the fact that unhealthy responses are coming from unhealthy people - my family - and that these people also constitute a lifetime of emotional abuse.

yeah...

and i'm distancing myself from my family to assist my emotional equilibrium. why hang around with people who affect me negatively? i am making an effort to spend time with people who actually like me and accept me.

but my family still pushes my buttons hard... without even trying (or trying very hard - i can't say if they actually make an effort to treat me poorly, or if i'm so overly sensitive to them that i add too much history onto anything they do or say, or if it is just a pattern of treating me the way they do... and now it's unconscious

anyway,

As i said, i have been poked and prodded by psychologists and ed psych types for my whole life, and none of them flagged anything before one in particular (this last summer) took note of my poor reaction to (and inability to relax because of) having light from a window on one eye (i was sitting at a right angle to the window in his office) and dark/less light on the other. he suggested i look at something that has been dubbed "hypersensitivity" or "hyperarousal" - and books about the "Highly Sensitive Child" and the "Highly Sensitive Person"

and here i am. trying to wrap my head around it. it's different than i thought.

my reactions are different than i thought they would be

and this long essay started as me just posting a few links to some videos and an article, but quickly turned into me trying to assure those of you who haven't met me that i am not a social misfit...

so here are the videos:





and a really interesting article from Wired Mag:

The Geek Syndrome

Autism - and its milder cousin Asperger's syndrome - is surging among the children of Silicon Valley. Are math-and-tech genes to blame?

Friday, November 26, 2010

I have been officially diagnosed with Asperger's syndrome and Non-Verbal Learning Disorder (NLD/NVLD)

What does it mean?

Not much

Despite having been poked and prodded and tested and screened since i was a young child, it wasn't until this last summer that i realised that there might be a neurological basis for various issues in my

life (all three of the kids in my family were either skipped or accelerated to higher grades - i was the person used as the basis for a series of enrichment programs and experiments in the schools i attended as the teachers/schools tried to figure out what the hell to do with me/us because we were that bright).

None of the experts - including a whackload of doctors and psychiatrists and educational psychologists and educational learning consultants have ever realised it until now.

Several thousand dollars and just about 6 months of testing later - voila!

even the guy who was testing me couldn't believe the results. I think he may end up writing a scholarly paper about it/me. apparently, in his words, my "incredible intellect" appears to have enabled me to compensate for all these years such that no-one realised it until very specific tests were done to evaluate specific cognitive functions in a manner that couldn't be compensated for.

it's also been hard to diagnose through the other trauma - the PTSD messes stuff up in the interviews and behaviours side of things, but the actual hard testing with pictograms , memory, and cognitive ability - symbolic interpretation and the like - clearly show that it's real - again - even the guy that was testing didn't believe it and consulted with several colleagues who do adult testing across Canada in order to review his results for errors

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Asperger's - you know - like Sheldon in the TV show Big Bang Theory

except i'm not like Sheldon. I am funny, gracious, sensitive, emotional and all that stuff. Pissy's met me in person - she can back me up on this. others who read this blog have also met me and would, i assume, back that up as well

BTW - the wikipedia information won't help much - it describes a much more classic case

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Oh, and I also have synesthesia - even if i had no idea of what it was until 6 months ago

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Asperger's

My brain functions differently than other peoples' brains. I process sensory information and other things differently.

Asperger's is part of autism spectrum disorder. So is Non-Verbal Learning disorder.

Theoretically they are supposed to be separate and can't co-exist, but i guess i'm special...

well - they can co-exist - because the diagnosing criteria are still not fully complete, because the condition/structure isn't fully understood - so, it really is only theoretical that they can't co-exist.

i do not fit the classic symptoms

i have some social interaction issues, but not that were ever really noticed as being out of line or extraordinary - i would be described as "nerdy" more than anything

i get obsessive on some topics, but i can generally figure out (maybe not right away) when a person is giving me signals to stop talking

i have noise issues

i have light sensitivity issues

i get distracted by TVs flickering (that's why i hate TVs in restaurants and bars)

i usually look at a person's mouth when they talk, not their eyes - which is okay - except sometimes when i am focusing i look down - which in the case of women often means my gaze ends up on their cleavage - and then i suddenly realise where i'm looking and have to look elsewhere (i am, of course, a big fan of cleavage - it's just rude to stare at it [unless requested too...]). that can be awkward when i suddenly "snap out of a reverie" and the lady realises where i was looking when i suddenly avert my gaze. but i've survived to date...

a couple of ladies i know who have extra hair on their upper lip also cause me problems because i will be staring at their mouths - especially since both have a habit of sort of playing with the extra hair at the corner of their mouths...

i don't read body language well

and i usually don't pick up when someone is lying to my face - the most preposterous of bullshit will slip past me until i'm walking away - then i'll go "hey! that was bullshit"

i have an unusually rich and detailed fantasy life

messy writing

highly developed language skills - but lousy math and spatial skills

i have discovered that i get way higher marks (30-40% higher) on exams and assignments when i do them in a dimly lit room with no distractions - now i understand why
(c.f. my post this is fucking bullshit for comments on how exam time limits burn me)

occasional obsessive compulsive behaviours

i have a need to pre-plan and pre-script a lot of stuff so that i have a template of expectations for various scenarios. one of my compensating mechanisms is pre-planning and pre-scripting all the possible scenarios i could encounter in an unfamiliar situation in order to be prepared for any eventuality (my best friend said to me once "you have a plan for what to do if a 9 foot tall man with 6 arms walks into the room and smacks you in the head with a halibut" (for the record, i didn't have such a plan at the time, but once he raised it, i did think of a plan - just in case). so, by now i have a whole range of off-the-shelf responses to things and it is all just natural...

it also explains why it would be easy for me to think and believe that the world should work the way i was told it did (nice, helpful, gentle, kind). and why it would take SO long for it to sink in that it doesn't work all nicey, nice... and why i would have such massive anxiety when the world didn't work the way i was told it should (hey - think sensory input issues and massive cognitive dissonance might cause fibromyalgia...?)

i have issues with some fabrics and textures against my skin

there's a whack of other little things that i would list, but maybe later - they are small and no-one would know except for me.

even Smitten would not have guessed until we started to delve into all of this. now she can see the behaviours in hindsight, but previously just thought "hey, that's him"

just because most of you haven't met me, i don't want any cliches to form in your mind as you think about me. so i will be preemptively defensive and mention that Smitten thinks I am perhaps to most sensitive male she's ever met (my sister, bless her overachieving heart) says "what about the "lack of emotion" part of the diagnosis? if anything you are overly sensitive!" (i guess she's NOT overly sensitive...).

my sister is in overachieving denial - if i have it, then she might have it - and that would make her less than intellectually perfect - and we couldn't have that...

my Dad is contemplating getting tested as well. i have told him i think he has it - he's way more of a dufus than i am when it comes to interpersonal relations, my son will be getting tested, and my daughter wants to know if her math issues are related. my dad wants to know if he has it because it might explain some of the crap that happened to him when he was a kid - getting beat up all the time, being a little spacey, usually off in his own world, various obsessive behaviours. my nephew (brother's son) has non-verbal learning disorder. his other son is fairly ADD (also part of the autism spectrum). i think my brother has it too for a bunch of reasons. studies show that 46% of first degree relatives of an asperger's person will have traits either clinical or at sub-clinical levels

anyway, more later - it's not going to change my life on an immediate basis, but will, i expect, have some longer term effect

the most important one is that i get to allow myself to be not perfect.

and i no longer have to beat myself up when i don't achieve what my parents demand(ed) i achieve - perfection (which i usually failed at) - what all those teachers demanded i achieve - and just never could

i can just say "fuck you"

i am me

and only me

and i can be who i want

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i don't want to use this as a crutch or an excuse - just a tool to understand myself and the why of things

i don't want to be defined by this - even some of the doctors i work with just cannot believe the diagnosis when i told them

most of my co-workers knew that i was getting tested - they couldn't understand why because "there's nothing wrong with you. you couldn't have it." my co-workers at this job and the last have told me they often come for lunch because they think i'm really funny and want the yuks

(can you feel the "OMG - they might think i'm not perfect" panic creeping into this post? i can...)

i've told some co-workers of the positive diagnosis, but they have filed it under "and, so?"

i don't want much of a "so" in my life

just to understand

that's why the noise and the lights bug me

that's why i have to hide and "re-order" myself sometimes

that's why i just don't get it sometimes when i am duped by people

but there is really no external affect

as i have more to say on it i will post

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http://en.wikipedia.org/wiki/Synesthesia

i have sensory crossover

i can smell colours sometimes

i can see shapes and sparkles in my vision field

i have a real issue under some specific light conditions with sensory crossover (grey and glare - oh, you mean fucking winter here? i hate winter)

sometimes sounds, and sometimes rhythms will cause colour and light cascades (looks like the patterns on windows media player)

sometimes it will happen during sex - that's pretty distracting, i'll tell you... weird patterns forming while going at it

i talked about it a little when i was a kid and got called stupid or silly and stopped talking about it. as i got older i was afraid i'd get locked up as nuts

then, while discussing stuff with my sister, i got brave and mentioned it

she told me she has the same thing and gave it a name - Synesthesia

i talked to one of the doctors here and she gave me a book about it

again - mine isn't real bad like some of the extreme cases - but it is still real

and now i know what it's called, and i know i'm not nuts

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i'll post more, but that's pretty much it for now

once again - please don't put me in a box with this label

talk again soon

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Catch these videos - i picked the girl out as having Asperger's, but not the one dude.





The following video describes more classic symptoms than mine: