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.

Welcome to my Autistic Interior

stairs outside buildingIt’s great to be here. After a whole lot of time spent more or less in the dark, things are starting to make sense. This is where I try to fit it all together… out loud.

I’m a 51-year-old Aspie (self-identified in 1998, reconfirmed in 2008, finally officially diagnosed in 2016). I tend to be more autistic, the more extreme my physical symptoms are. When my physical symptoms are chilled out, I just register with most folks as a shy geek who has to be prompted to come out of my shell. I prefer to keep to myself, and I credit my self-sheltering with keeping me as sane and functional as I am. And I am.

I have a lot of sensory issues that I deal with each day — most of them invisible to the outside world, and not very well-understood by people not living in skin like mine. These range from heavy-duty vestibular upset… to daily tactile problems with fabrics, light sensitivity, and auditory problems (hearing too much or not enough)… to a weirdly irregular sense of smell… and so on.

I’ve been what some would call “autistic” for as long as I can remember, and it’s brought me a whole lot of pain and woe, so I’ve learned to conceal it with the best of ’em. I can’t see why my life should be limited by other people’s ignorance. It’s just not logical. So, I conceal my issues as best I can and “pretend to be normal” with the best of ’em (don’t we all do that, on some level?).

I’ve been in hiding — to the best of my ability — my entire life. And I have my concealment to thank for the fact that I’m living an ostensibly normal life. I have a job, a career, a spouse of more than 25 years, a house, a mortgage, two modest but reliable cars in the garage, a few friends, a great resume, a local political volunteer position, active interests… and so on. I’ve developed most of them in isolation, and I’ve trotted them out mainly when I’ve felt okay.

The idea of living my life in full view of everyone is extremely stressful, because of my past history of merciless bullying and teasing at the hands of friends and family and strangers alike. I tend to keep to myself, because stepping out into the outside world is not particularly safe for me.

Now, though, I have this blog where I can speak anonymously. I do feel it’s important to speak up about what it’s like to be autistic (or Aspergian) in the neurotypical / NT world. There’s just too much disinformation being spread around, and there’s just too much “intervention” being pursued that might not ultimately be that helpful. Some of it is outright hurtful.

My intention with this blog is to give Autism and Asperger’s Syndrome a(nother) voice that breaks the “mold” that the scientific and medical communities have formed around folks like me — visual thinkers with specific sensory / physiological issues, which result in peculiar behaviors that confuse and alarm people who aren’t like us.

I’m not a hazard to you, and my soul hasn’t been snatched by this “dread disease”. I’m actually a very “normal” person, if you disregard the things that make me highly atypical. But even the things that make me highly atypical equip me for life in this world in unique and significant ways, which help everyone around me — including NT folks who would just as soon have me go away.

For the record, I will not go away. I will not be put away. It’s happened too many times to people, just because they were stranger than their families, friends, and general practitioners could tolerate… and because they had needs they could not articulate adequately. What a shame, that one should be locked up, shot full of pharmaceutical concoctions, even subjected to electroshock, simply because tehy don’t primarily process concepts by typical means… That’s not going to happen to me.

So, welcome to my world — the Autistic Interior.