I am here

aspie-quiz-overview
This would be me – at least, in my 2015 Aspie Quiz results. It’s pretty much the same as when I took the test in the past.

If it’s wrong to be fascinated by this, then I guess I’m very, very wrong.

Because it does fascinate me.

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Having “the Aspie talk”

the-talkRecently, I was introduced to a woman who works with autistic and developmentally delayed kids. I friend introduced me to her, and later this week, we’ll be at a social event together.

And I don’t know what to do. I’m stressing.

Why the dilemma?

Well, my life has seen several types of interactions, whenever I meet someone socially for the first time. Either:

  • I keep my act together, I don’t stim or tic or spaz out, I manage to make decent eye contact and converse like a regular person, and everything goes just fine ‘n’ dandy.  Or…
  • I become very nervous, stim and tic and get clumsy. I don’t make good eye contact, and my conversational timing sucks, with me either talking over others or not knowing when I’m being cued to respond.  When that happens, a few things can result:
    • The person(s) I’m interacting with may have no familiarity with AS issues and never notice. They may become mildly annoyed by my clumsiness, but just figure they just met me, and give me the benefit of the doubt, thinking I’m just shy.
    • The person(s) I’m interacting with may be very familiar with Aspies, and do a “spot diagnosis” in the moment, proceeding to “send me clues” about being an Aspie — like references to books or movies about Temple Grandin, mentions of friends they have who have Asperger’s, or some other hints that really rattle me.

I hate hints.

I hate coded messages.

I cannot stand socially “nice” passing references that don’t come right out and say what people mean. Especially for this Aspie, it’s disorienting. And it heightens my anxiety — which makes me even more prone to stim and tic and get clumsy in multiple ways.

Cue the curious looks from friends. And discomfort from my partner. Then cue the shutdown. Cue the ensuing social friction. All followed by a couple of days of crushing demoralization, when I rally to get my act back together.

Of course, I do rally. I always do. And it’s back into the mix I go.

I’m sure I’m over-thinking this way too much. No kidding.

It would be one thing, if I were interacting alone with this woman. If she started hinting around at my Royal Aspieness, I could just come right out and say, “Yes, you’re right – I’ve never been formally diagnosed, but hand me a checklist for issues, and I’ll hand back a form that’s 95% checked off. And anyway, the Aspie Quiz keeps telling me, every couple of years, that I’m well within the range for Asperger’s. Plus, many other co-workers and strangers have ‘diagnosed’ me on the spot, so while I’m not much of a gambler, I’d put a stack of 20’s on the chance that I’d be officially diagnosed in a heartbeat.”

But that’s not going to be possible. There will be others there. And one of the others is a man who’s told me a number of times that it’s impossible for me to be on the spectrum. I make too much eye contact (not sure where he’s been, in all the years we’ve interacted – I make lousy eye contact with him). I’m too good at figuring out what others are thinking — that whole Theory of Mind thing. I don’t have the classic signs of Autism. I can’t be an Aspie. Because, to top it all off, he’s a psychological professional, and if he can’t detect it in me, then it must not be there.

Personally, I think he just hasn’t kept up on his reading, but who am I to say?

And because he’ll be there, I won’t be able to speak up the way I want to, if/when this woman gets a “whiff” of my peculiar ways.

The whole thing has me wanting to stay in bed the rest of the week. I stayed in bed for most of today, while I could. It was glorious. I took a leisurely nap, then I read for hours with my tablet propped up on my stomach, with the curtains drawn and the room dark. I know I’m not supposed to read in bed, because it makes my bedroom into more of a study than a room for sleeping, but it was wonderful to just shut the world out and only do what I wanted to do in ways that caused me no pain, no discomfort, no anxiety.

The crazy thing is, I would love to just come right out and discuss my situation openly. I’ve been dancing around this issue for most of the past 20 years, when some coworkers basically ordered me to take the Aspie quiz that Wired Magazine featured back in the late 90s. I took the quiz, along with a bunch of my team members, and we all compared notes. Nobody was surprised when I scored high.

But we dropped it, and it never came up again.

Nine years ago, I started digging into it again — largely at the prompting of people I met and/or worked with, who did that whole Aspie hinting thing again. There was more material available, so I took more tests. Again, I scored well within range.

But there was nothing to do with that information, especially when some of my closest friends shot me down.

“It can’t be!” They seemed personally offended that I thought it was the case.

So, here I am, all these years later, getting edgy about the prospect of being “outed” as it were, around a skeptic.

Whatever happens… well, it happens. It would just be nice to speak openly and freely about it, for once, without people freaking out.

Just once.

WHAT DOES AUTISM SPECTRUM MEAN?

This is a fantastic summary by another blogger of the conflicts inherent in the blurring of lines between Asperger’s and Autism. It summarizes pretty much everything I think and feel, but in a much more cogent and experienced way. It’s also the reason I’m phasing out use of the unqualified terms “autism” and “autistic” from this blog. I’ll refer to the autism spectrum, or “the spectrum”, sure. But not only does it not feel right to me, applying the Autism label to all conceivably related conditions, but it’s also logically and ethically indefensible.

This is a fantastic read. Please check out the blog “Happy Asperger Marriage“, if you haven’t already.

Happy Asperger Marriage

It means the professionals are FAILING US

“Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.”  – Autism Speaks Inc.

First; A BIG SHOUT OUT to the negligent professionals who chose to chuck Asperger’s syndrome/disorder into the diagnostic category of Autism Spectrum Disorder!

No seriously; I have a big fat THANK YOU to send your way for effectively destroying the hope of finding a skilled therapist to ever help my marriage or the many others like mine.

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Fun with NOs

no-hands-wideAt times, it seems like the scientific/medical world and “Planet ASD” are in parallel universes — parallels by definition don’t intersect, which often seems the case. Back when I was doing my willy-nilly research in 2007-2008, I came across a number of mentions about how folks on the autistic spectrum didn’t have sufficient self-awareness to self-assess.

Huh. How ’bout that.

Of course, there’s Temple Grandin (the mention of whom got me started looking into the possibility of being on the spectrum), but she’s an outlier, right?

Oh, but then there’s the account I read back in 2008, about Carly Fleischman, an autistic girl who expressed “unimaginable intelligence” after years of being treated like she was severely impaired.

“Laypeople would have assumed she was mentally retarded or cognitively impaired. Even professionals labelled her as moderately to severely cognitively impaired. In the old days you would say mentally retarded, which means low IQ and low promise and low potential,” Arthur Fleischman [her father] said.

As I recall, her father also expressed dismay that he’d said certain things about her, right in front of her, all of which which she heard and understood. I didn’t envy his situation, when I read that.

Carly’s situation is an extreme case of what so many of us experience. And it goes on, day in and day out. People don’t know how it is. And they don’t realize they need to. Even the people closest to us don’t always get it. So, the best we can sometimes hope for is a sort of peaceful co-existence where everyone makes at least some effort to be kind and caring, even if we don’t understand each other 100%.

Ironically, that’s often enough. Do we ever know and understand each other 100%? Who knows?

But again, I digress.

Back to the fun. Yesterday, after the frustration and angst about past experiences subsided, I started to re-experience just how much fun it is to see yourself explained by others — who do know. Just pulling all those descriptions / criteria of women-with-ASD experiences was a relief.

It was hours and hours of “Fun with No’s”

No, I’m not crazy.

No, I’m not imagining things.

No, I don’t just have the wrong attitude.

No, I’m not reading into things.

No, I’m not looking for ways to get attention.

No, I’m not misinterpreting my experience.

No, I’m not making this all up because I’m bored and want to feel special.

No, I was not crazy as a child.

No, I was not punished daily by parents who thought I was bad — I had severe sensory issues that made just about every human interaction feel like painful punishment. My mom, especially (who is hyperactive, hyposensitive and is EXTREMELY LOUD AND TACTILE) was just trying to connect with me, but I was constantly pulling away from her and my dad, because every physical contact with them was painful. They were actually trying to show love and affection, but my experience was that it was All Pain All The Time.

No, I don’t have to continue living like none of this matters, like none of it is a factor. It’s a huge factor in everything I do. Every single bit of it.

And no, although it would be nice to find a professional I can work directly with who understands my situation and can offer support, I can live without it. I know what my issues are, and I have the wherewithal to research solutions. I have my interior process where I can sort things through on my own. I also have my online life where I can do my own investigations and figure out how to apply them.

Lots of “No’s” — all of them good.

I forgot how fun exploring #aspergers can be

maze-with-wallsYesterday, I spent the morning online, reading up on women and Aspergers, the female phenotype, and the many things that make us unique… and keep us under the diagnostic radar.

Tania Marshall has fantastic material at her site.

I can’t recall if I’d read her back in 2007-2008, when I first flung myself willy-nilly into exploring my “spectral” life, but some of what she says sounds familiar.

And it’s really fantastic to read her work.

In typical fashion (and I have the many notes and notebooks from years of research & self-inquiry to show for that side of me), I got enthused and pulled the lengthy list of ways Aspie life is “interesting” for women into an OpenOffice document (some 14 pages worth). Then I marked the ones that pertained to me. I set a different font (14pt Verdana Bold) for the ones that were typical of my life (past and present), so that I can refer back to it anytime and see at a glance the things that are connected to Aspieness.

By the time I got to the end, the pages were nearly completely set in 14pt Verdana Bold, and the ones that weren’t 95% converted to the heavier font still had a good deal of it in there.

criteria-bold

The page count didn’t expand much, but if I filled in my own details to flesh out the descriptions, I could easily multiply the number by 100.

It’s a breath of fresh air to read Tania’s blog posts, including the references to recent research and scientific findings. And I ordered her AspienWoman book.

Of course, there’s the inevitable sinking sense of desperation at how much time I’ve lost to all my issues, how much it’s cost me, how much it’s set me back.

I can’t help but wonder how much more I might have accomplished, had I known what the causes of my issues were, and taken steps to address them. Because I could have. Even if nobody else knew or could help, I could have gotten my head around it and done something constructive about it.

I’m like that. I fix things.

Then, came the “oh, fuck it” moment, when I got it through my ruminating head that I’m not at the end of my road, and there’s more that I can do.

This is all just more information for me, and although the pain and suffering hasn’t topped my “fun list”, it still sensitizes me to the sufferings of others, who may have their own set of issues that nobody knows about. I have an encyclopedic awareness of the majority of these issues, from personal experience, which might let me help others as well as myself.

So, the pain is good for something.

It has been exquisitely instructive.

Plus, now it doesn’t need to continue — for me, at least.

I’m all grown up now (sort of?), and I have the ability to do whatever I want to with this information.

I can do something about it — with it — because of it.

So, I might as well make the most of it.

And be grateful for what I’ve received.

It’s about damn’ time I put the joy back in this Aspie life. Because I swear to God, it is so amazingly cool to actually understand why I have the experiences I do, and to recognize a larger pattern I am a part of.

Aspie women apparently have a keen love of finding patterns. So, not being part of the dominant paradigm (“neurotypical”) pattern has always been a struggle. But when the seemingly disjointed and disconnected parts of my life were identified as being part of another clearly defined neurodiverse pattern specific to women on the autistic spectrum (which differs markedly from the neurotypical pattern), what a relief it was.

And it still is.

It was in 1998, when I first took the Aspie Quiz.

It was in 2007-2008, when I took more quizes and put more pieces together.

And it’s a joy to be exploring this again.

Thanks to the awesome ASD women bloggers out there, who are speaking up and providing a consistent voice for those of us casting about, I’ve now got a fantastic context for the why’s and wherefore’s of my delightfully complex, formerly inexplicable life.

Under water for seven years

tree-solitudeBack in 2008, I felt like I had a new lease on life. I had come across a bunch of Asperger’s / Autism questionnaires, and I completed many a self-assessment. It was a repeat of a bunch of online test-taking I’d done back in 1997-98, when Wired Magazine published a link to the Aspie Quiz and everyone in my engineering group took the test, most of us scoring well within range.

I was one of them, which didn’t surprise anyone at all.

In 2008, I took additional tests, as there were more to take. The results of each told me I was well within “the spectrum”, and it was a breath of fresh air to actually have a way to conceptualize all the strangeness and struggles of my life. There was more material about autism than there’d been in the late 90s.

So, I started to read.

And being the writer I am, I started to write. I was so excited — and quite naive, in that childlike way we can be. I wrote some blog posts. I wrote some eBooks. I just wanted to  share what I had, with this new information I’d come across.

And then… welcome reality.

Autism was a much too “loaded” a topic for me.

There was too much emotion with too many people yelling. At me. About me. Saying I wasn’t autistic enough. It was all in my head. Congratulations for being on the “mild” end, but I had nothing to complain about. I wasn’t even close to as bad off as other people who “really” had autism. So, stop acting like I was an expert and get some formal training.

I just wanted to share and explore, but people seemed so charged about the whole topic, I lost my bearings and got derailed.

All the reactions from friends who were flabbergasted that I’d think I was autistic, left me cold.

It left me feeling so depleted, so physically unsettled, that I couldn’t even think about it, even in the privacy of my own head.

I couldn’t continue to read up on it, on my own. Nor could I think about it, without feeling ill.

So, I stopped reading about it.

I stopped writing about it.

I stopped even thinking about it.

I had to walk away.

And I went on with living my life.

Without dealing with the ASD.

But surprise! It’s still here. It’s never left. And I’m finding the blogs of others who have the same experiences I do, which is a breath of fresh air.

I may not emerge from this underground again. I may not post on this blog again.

Who knows?

It’s been nice to have the quiet.