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


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


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



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


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


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


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


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:


terry said...

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

stop it. stop it right now.

no one is perfect. NO ONE. especially not the people who think they are.

the only one who expects you to be perfect is you.

i'm glad you're learning more about yourself, but don't put yourself in any box while you do.

as you say, you are you. and you are enough.

Sicilian said...

Before I read your post I googled Aspergers. . . . . I think it is good to know. . . I think it may answer lots of questions . . . . and I think there may be others in your family who will relate. . . . even if they don't want to relate.
I get the feeling that you are a bit overwhelmed right now. . . . don't let the diagnosis define you. . . . you've made it a lot of years. . . . use this information to your advantage. . . .

cadbury_vw said...

Terry, Sicilian: thank-you for coming and reading and your comments


i'm ok with the diagnosis. i have known i am a little different for my whole life, and i can live with me. i'm more concerned about how others will react.

my sister's highly negative and demanding reaction threw me off. mom and dad were surprisingly calm about it - and dad interested in being tested himself, but my sister...

as i have examined my universe, i have discovered that most of my friends actually like me (strange thought, hey?) and accept me. my family and my ex (and some of the friends i attached myself to) felt it was their duty and right to point out my life failures.

that familial demand for perfection and criticism of not meeting that bar was/is high. i am in a state of some anxiety as it is my dad's birthday and my sister has flown home for the weekend - will be going to pick her up from the airport shortly. she was fine while she was at harvard, but since she went back to work (with a promotion) she has been a total bag.

it is fairly huge thing to have permission to just be me - that's one of the things the diagnosis does for me. it becomes a shield in my mind to allow me to say "fuck you" when i don't meet that bar. i then get to meet my own bar - and i'm a softie (just ask my kids) full of permissiveness and generosity and forgiveness

so i'm good with me

but my sister pushed buttons i hadn't anticipated and left me quite flat footed when we talked.

my best friend's response to the news "Don't worry, I still love you"

smitten's response, even before the diagnosis was complete (humourous voice): "I'll still love you even if you are an aspie" with a wonderful lilt in her voice

my sister's response: "And now what? What are you going to do with this information? a diagnosis is just a tool. what are you going to do to fix it?"

i had expected a rational discussion of the diagnosis and how there may be affect in the rest of the family and what benefits would flow from it - she had been supportive of the investigation previously, but then poof - aggressive - if we can help the kids and help ourselves then this would be a good thing for our family, i thoughtbut instead this was all about me and fixing me

not us as a group


got to go pick her up now - Talk to you later

Mouthy Girl said...

I have taught several kids with Asperger's as well as several who are on the more severe end of the autism spectrum. Although there are some "usual" aspects to people who have been diagnosed with Asperger's, everyone's different - including you.

Although there is some communication/emotional aspects linked to the syndrome, nothing is tried and true for all people. Some of the kids I know with the "label" are the most emotionally "in-touch," loving, and compassionate people I've ever met. Others, not so much. The main component I've seen that's consistent is that people need to feel trust and love from those around them in order to see past the wall that is Asperger's. I've seen past your wall as have Terry, Smitten, Pissy, TCole, and many others. This is due to the fact that you let us in.

YOU allowed it to happen. You are Cadbury - you are NOT Asperger's and NLD/NVLD. Allow the diagnosis to help you gain more insight rather than slap a label on yourself.

I'm so glad you feel that the news has validated feelings and experiences you've had throughout life. Thanks for trusting us the update.

Mouthy Girl said...

You don't have to be "fixed." You are already whole, and your sister's aggressive turnaround makes me grimace and pray that she changes her stance to something vastly more supportive and objective.

Big Pissy said...

Cad, you are SO right: I HAVE met you in person and adored you (and Smitten) in person just as much as I have on your blog all these years. :)

I'm glad for you that you've gotten answers.

Now just keep on being you!



t_cole said...

Had ti skip to the bottom and write this before finishing the entry--

t_cole said...

okay, I have read all of it now and am not quite as Pissy about you meeting Pissy!
You know what I take from this - HOPE! for my Sam. You have this beautiful rich full life AND a diagnosis.
I have loved and adored you from the start. I feel the same now. You have always been here for me. As I am here for you now and always!