What if #autistic people *need* to “lose words” when we’re young?

clam shell closed
I appear to be “clammed up”, but I’m thinking… how I’m thinking… And I’m happy. As a clam.

An interesting thought came to mind while I was doing my  morning exercise bike ride. I was on Twitter, and some folks were talking about how their kids “lost words” (i.e., became non-verbal) at such-and-such an age. Some of them “got their words back” when they were older, and then they had very advanced vocabularies. But the distress over the idea of kids stopping speaking at a certain age was palpable.

For the record, I don’t believe I ever went 100% non-verbal for extended periods of time when I was a kid. At least, not in the stereotypical way, where a neurotypically developing toddler who used to chatter a mile a minute suddenly stops speaking and doesn’t use words to communicate again for years on end.

I have always had issues with selective mutism. In certain situations — especially when overwhelmed and distressed — I will “clam up”. Literally. I’m like a clam, my verbalizing clamped shut tight like a clam just pulled out of the sand. Part of what’s happening is that I’m working overtime to block out any extraneous external stimuli that are interrupting my thought process. Part of what’s happening, is that my thought process has absolutely  nothing to do with words. I am deep in a process that is visual and spatial, with colors and feelings and shapes and images all churning in my mind. Concepts, for me, often take a shape — a figure, like a person standing at an open door, or a cat scratching behind its ear, or a tree waving in the wind, is a sort of “conceptual container” wherein a lot of different ideas and concepts dynamically abide and interact with each other, making it possible to merge ideas that words can’t easily combine.

And the thought occurred to me that maybe, just maybe, we’re not actually “losing words” when we stop talking for a while. Maybe, just maybe, especially when we’re kids, the non-verbal phase is actually a very important integrative time for us, when we’re developing so rapidly in visual-spatial ways, that words cannot possibly summarize or effectively communicate what we’re thinking. Maybe, just maybe, we need time to integrate what we’ve learned, thus far, and we need to sort it out in our heads. Maybe, just maybe, we need that non-verbal space to develop our non-verbal processing. Which of course means that we’re not talking, while we’re doing it.

And maybe, just maybe, that’s a good thing. There’s a whole lot going on inside our autistic selves, when we’re not talking. And when people around us get so upset and nervous, it actually adds to our stress. When I’m non-verbal, I actually feel wonderful. It feels like everything is flowing. It’s just such bliss, to be able to let the concepts and thoughts, feelings and impressions, all swirl together and sort themselves out. It’s like butter — buttah!  But then people around me get upset that I’m not “using my words”, and I’m pulled back into a kind of thought process that isn’t comfortable for me — most of all, because I have no confidence that A) I’ll be able to express just what I’m feeling in words, or B) the people I’m trying to communicate with are going to understand exactly what I’m talking about.

It’s a losing proposition, this verbalization business. On both sides. But I’m so sensitive to the anxiety of others, that I feel compelled to speak. Or, if I simply can’t do it, I may melt down. Freak out. Withdraw. Because I’m trapped by the insistence of others. And if I don’t comply, their insistence may be accompanied by the excruciatingly painful physical contact of a light touch, which feels like I’m being beaten. So, I’m trapped. In a very real way.

And when I was a little kid, it was the worst. Because I didn’t have the right to refuse. I didn’t have any way to retreat from my surroundings. So, I resigned myself to the experience of being hit, pummeled, beaten, on a regular basis. NOT because I actually WAS beaten by anyone who wanted to hurt me, but because the lack of awareness of others turned their attempts at physical contact into the equivalent of assault.

As an adult, when I go non-verbal, I can excuse myself and come up with all sorts of redirections, as well as remove myself from hostile situations. As a kid, though… not so much.

Anyway, back to the up-side of non-verbal activity.

Can I just say, going non-verbal is just so wonderful at times. It feels wonderful, as my thoughts and impressions and different ways of thinking are allowed to stretch and expand and just be… And while I can only imagine what it’s like for a little kid who goes non-verbal, it strikes me that the autistic impulse to take a break from language for a while might actually be a very good thing.

Because think about it — if you’re a non-verbal / picture / images/ visual-spatial thinker, you’re going to use different parts of your brain to process information, than if you’re very words-oriented. I’m not a neuroscientist (officially, anyway) but I suspect that that part of the brain may actually not be ready to develop, until you get to, say, 18-24 months or thereabouts. Hmmm… I’ll have to do some research on that.

And if you’ve been immersed in a language-centric environment for the first 1-2 years of your life, which may not feel all that familiar or comfortable to you, anyway, when your brain is finally ready to develop visuo-spatially, then Woo Hoo! it’s time to party! And when you can actually conceptualize with your newly developing visual-spatial brain, it might feel like such a relief, that you can’t be bothered with using words anymore.  Plus, if that part of your brain is developing, you need to acquire the skills to use that amazing power — which really is pretty amazing, when I think about it. I can process more, get more done, have a far richer and more elaborate life, than the vast majority of people I know… because I think in pictures and I process information very differently.

So, not only is it a relief to be able to conceptualize visually and spatially, but it’s also a skill you need to focus on and repeatedly use, to develop it fully.

And that means you have to make some sacrifices along the way — like words. But if those words don’t actually mean much to you, anyway, because your thought process is very different, then it’s no great sacrifice for you.

But all the while, people around you are getting more and more distressed that you’re not talking. They’re pissed off at you. They’re pissed off at themselves. They’re confused and afraid and are so terrified that THERE IS SOMETHING WRONG WITH YOU. Meanwhile, you’re having a wonderful time in the thought palace of your mind, figuring things out, studying the world so you can better interact with it.

But everyone around you is getting all worked up… And you pick up on that stress. You internalize it. And you start to think that you’re broken. Damaged. Deficient. Incapable. Stress ensues. Incredible stress. Why should you try to talk, anyway? If the Preferred Mode you love and excel in is clearly not acceptable and is a sign that you’re messed up, how can you possibly handle the Secondary Mode that makes you nervous, is full of shortcomings and inaccuracies and inefficiencies, and cannot communicate what you truly  mean, anyway?

And I wonder if the stress of not being allowed to just develop your visual-spatial thought processes in peace, might actually prolong the development process. We know from plenty of research that stress affects learning. It affects adaptability. And the stress of parents of autistic kids — which the kids totally pick up on and often internalize — just slows everything down. If there were less stress, less pressure, on non-verbal kids to USE THEIR WORDS, might they actually develop their visual-spatial faculties more quickly, and then be more comfortable in whatever mode they chose — including words?

I’m not advocating taking the pressure off, to make non-verbal kids verbal. I’m suggesting we could chill out, so that kids can develop their full-spectrum abilities and unique ways of thinking… so they can learn to use whatever mode they want, however they want, and shift seamlessly between the modes that suit the situation best.

Just a thought… Maybe, just maybe, autistic people need to stop using words, so we can start using the other parts of our brains that so often go unrecognized as the Very Good Things they are.

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No longer pretending

Awesome post! Sounds like an excellent plan!

the silent wave

I’m not sure exactly when it happened, but a little while back, sometime after finding out that I “have” Asperger’s/autism, I shed part of my mask.  I realized I’d been “acting” all this time, and I gave myself permission to drop the act (at least, most of the time).

The reason I’m only writing about this now is that I only became conscious of this act-dropping and permission-giving more recently.

During an insomnia bout last week, I verbalized to myself the following…

I’m just going to be me.

If I need to stim, then I’m going to stim.  (Sometimes I have little choice; I can stop if I really concentrate, but the minute I begin to focus on something else, the stimming resumes.)  If I want to rock back and forth, then I’ll rock back and forth.  I find that very relaxing.

If I want to be straightforward, I’m going…

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This image says it all about #autistic adjustment to the NT world

It’s from a Twitter post about research being done to help parents of autistic kids deal with stigma.

“First ever study to help families cope with the stigma of autism is launched”…

How “functional” am I *really*?

Great analogy! I am such a freshwater fish, myself.

the silent wave

(I’m issuing a potential Trigger Warning for marine life empaths.)


Apparently, about 96.5% of all water on earth is salt water (link to Universe Today).  That leaves only 3.5% of the water on earth as fresh water.

Aside from a few select fish that can survive in both environments (link to LiveScience), a fish is either designated as a “freshwater fish” or a “saltwater fish”, and can only survive in their specific environment.

If a type of fish is inadvertently placed in the wrong environment, the fish will perish.

However, if we knew that the fish was in an environment incompatible for that type of fish…

…we do not say that something is wrong with the fish.

The fish will obviously not do very well in the wrong environment.  It will indeed slow down and become sick.  It will eventually die.

Aspie/autistic people are much like freshwater fish.  (We don’t…

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‘Research says there are only 4 emotions’ – one Aspie’s response

Great points, well-reasoned!

the silent wave

One day, my counselor/therapist asked me to try to identify what I was feeling.  He listed off the basic categories on his fingers.  “Happy, sad, mad, scared.”

I froze.  Not in fear, but in confusion.  What if what I was feeling was more vague and/or complex than that?  How do I shoehorn it into just one category?

I took my best wild-arse guess.

I don’t remember what it was.  What I do remember is getting home and thinking, “Happy, sad, mad, scared” just doesn’t cut it.  I can’t speak for other Aspie/autistic people, much less the “rest of the world” at large.  But I can speak for myself, and I’m thinking that those categories are much too simplistic, at least for this Aspie.

Sure, “happy, sad, mad, scared” are the four accepted principal emotional categories, but my (and probably others’) emotions run deeper and more complex than that.

For example…

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Routine saves me

compass
Just point me in the right direction, and I’ll stay on track, for the most part.

I have not been as focused as I’d like to be, over the past months… and years.

I have not been taking care of things that I should be taking care of. I’ve fallen behind in many ways that I really do not like.

I know I need to fix this. But how?

So, I asked a friend who’s really into psychology. She does it for a living. She’s telling me that in order to get my life in order — to the degree I want — I need to harness my motivation. I need to figure out why I want things, and then tap into that desire to keep myself moving forward. Every time I start something — or just think about starting it — I need to remember what my motivation is, and then tap into that wellspring of passion to propel me forward.

I’ve only known this person for six months, a few weeks, and a few days.

She clearly doesn’t know me very well.

Relying on my motivation and frame of mind to move my life forward is a terrible idea. She’s not very helpful, in that respect.

Actually, come to think of it, I don’t need to solicit her for input. I myself know how I can fix my situation.

Basically, I need to foster the kinds of habits that keep me going in the direction I want to go. I need to build out a schedule and a routine that supports me in doing what I need to do. I’m heavily routine-driven, and I’m an inveterate creature of habit. So, if I get in the habit of doing the right thing(s) on a regular basis, at a regular cadence, I can pretty much rely on my routine-driven system — as it’s wired — to carry me through and keep me on track.

So long as I get adequate rest, I can pretty much rely on that.

Of course, if I wear myself out, then I run into issues.

But I don’t have to go there. I can pace myself, manage my energy, go to bed when I need to go to bed. Structure my life in a way that serves me, rather than dragging me down.

So, that’s what I’m going to do.

I’m in the final months of 2016, and there are some changes I want to make for next year. So, I’ll start making them now.

And I’ll use the strengths and particularly unique qualities and inclinations of my system to do it. And stick with it. In the ways that work best, in my own individual situation.

Sharing from Spaced Out & Smiling – Identity is hard – why I use identity first language

Found this great little post, just now – check it out!

I am autistic, that means a few key things. The first is that I am complete and whole as I am. There is no non-autistic me somewhere trying to get out. The autism traits cannot be separated from me. Secondly it means that I have a group to which I belong.
I am autistic, that means a few key things. The first is that I am complete and whole as I am. There is no non-autistic me somewhere trying to get out. The autism traits cannot be separated from me. Secondly it means that I have a group to which I belong.

Read the full post at: Spaced Out & Smiling

In praise of positive discipline

plane flying upwards with smoke coming out of the back
Life just happens. I get to decide what to do with it.

It’s been about three months since I had my official autism assessment that, yep, confirmed what I’ve known for 18 years already. I’m squarely on the spectrum.

Ta da!

There have been some ups and downs over the past months, as I’ve thought back on all the stuff that went on in my life… thinking how different things might have been, had I known what the deal with me was, and had I actively managed my issues all along the way.

All this old pain came up. Lots and lots of it. I went into a bit of a tailspin,

plane nosediving with smoke coming out of the back
Nobody’s forcing me to go into a nosedive.

I disclosed to an old friend. Her response was mixed. She was a little dismayed that she’d done things in the past that really put me off (tho’ I didn’t tell her). And she apologized for not being more sensitive. I brushed that off. And for the most part, her reaction was to pretty much shrug it off and said, “Well, you’ve always just been you, so…”

She didn’t see why an official DX was a big deal. To her, I was still the same person, and knowing the name behind it didn’t actually change things for her. If anything, it just made her a little uncomfortable, and she became more self-conscious. So, in the end, there wasn’t much point to disclosing to her, after all. I mean, an official positive-for-autism assessment means the world to me, and it helps me put things in perspective. But the rest of the world doesn’t exactly know what to do with that specialized information. Just like they don’t exactly know what to do with a lot of other specialized information — like how to operate a drill press safely, while drilling holes in pieces of metal… like how to code up an interactive web page… like how to quickly get the lay of the land in a new locale and find all the hardware stores within a 10 mile radius and identify which among them have the best deals on potassium chloride water softener alternative (I highly recommend it!), home repair supplies, and that particular type of steel wool that isn’t chock full of chemical cleaning agents.

I don’t fault the rest of the world for not being as adept at acquiring the specialized knowledge which I consider required for effective living. And I’ve stopped faulting others for not understanding autism / Aspergers and how to best interact with people like me. I’m the resident expert in that, and I realize it’s “on me” to give them the clues they need and the guidance they desire, to be on good terms with me (if they like).

I’m headed down to see my extended family for Thanksgiving. I’ve been considering disclosing to them there. I’m reconsidering. I think I’m just going to let that ride. My nephew who’s such a textbook Asperger’s case may or may not be there. I’m not sure I’m going to have time to talk with him, anyway, because we’re all like ships passing in the night, with my side of the family. It will probably be easier to just email him about it.

Anyway, what was I going to talk about? Oh, yes – positive discipline.

A lot of people have a negative perception of discipline. They equate it with punishment – perhaps because when they were punished (perhaps unfairly) as kids, it was called “being disciplined”. I don’t have the same association. For me, discipline is a key cornerstone of life. I have to have it, or things just dissipate and fall apart. And that’s where my tendency to descend into chaos actually comes in handy — because it’s forced me to acquire habits that keep me on the good foot… balanced and productive… happy and healthy. I have to really work at it, to be honest. It doesn’t come naturally. But because I descend into panic, if things come apart at the seams and I lose sight of the patterns in my life, the alternative to NOT being disciplined is simply too stressful for me to handle.

So, I keep myself intentionally oriented… on track… disciplined.

And that’s a very positive thing. It’s not the most pleasant experience, to live with this little cloud of panic / anxiety hanging over my head. But hello, I’m a grownup. And I am totally capable of doing something about it. I don’t have to give in to it. I don’t even have to experience it fully. I am perfectly capable of keeping myself on my schedule with my routines and my discipline and my re-direction of my nervous energy in a positive direction.

The net result of my management of the considerable levels of pain and discomfort I can find myself in, over the slightest little thing, is a positivity and a self-directed-ness to my life that outweighs and out-classes any amount of panic, anxiety, dread, discomfort, confusion, and so forth — all the stuff that comes along with living on the autism spectrum. And the fact that I am really not a fan of living an excruciatingly disordered life, gives me impetus to do something about it.

Because I can.

So, I do.

And in the end, I have to say that the pain and discomfort and confusion are so, so worth it. I doubt I’d have the fortitude and the discipline I have, without the downsides.

Now, I’m not going to tell anybody else how to live their life. I’m not going to pass judgment on anybody else who’s living on the spectrum in extreme distress. I feel the deepest compassion for them and their situation. Mental illness often walks hand-in-hand with Autism / Asperger’s, as does physical conditions like EDS / hypermobility. I’m in no position to judge anyone else, other than myself, and I can only speak to my own experience.

My own experience is one of living for half a century of pain and confusion, frustration and unmet needs… The vast majority of them unmet during my childhood, teen years, and early adulthood… even my middle-age.

But there’s another side to that, and it wouldn’t be fair to overlook it, for the sake of dramatic impact. That’s the side of having learned the hard way, just how to understand and manage my issues. How to cope with them. How to offset them. How to integrate them into my life in a healthy way. It’s the side of me being extraordinarily happy in my life, despite all the wretchedness — which has been a direct offshoot of a disciplined approach to my life. By keeping myself on a straight-and-narrow path — the one that works best for me — I’ve been able to transform a ton of terrible stuff into pure joy. Making the proverbial silk purse out of a sow’s ear.

Because I can. I’m autistic. I’m not Wonder Woman, but I do have some pretty super powers, and if I don’t use them for my benefit, what’s the point?

Seriously, what’s the point in me being autistic, if all I have is pain?

There’s a whole other side of it for me, which has been hard-fought — and hard-won.

And that’s the side I choose to focus on. Along with everything else.

Life happens. I get to choose what I do with it.

Accessible Autism

This is so true for me, as well.

Autism and expectations

Access to services doesn’t just mean that services need to exist, it means we need to be able to access them.

I’m not good at contacting people. That is an enormous under-exaggeration. I am terrible at contacting people. If it needs to be done by face or by phone, I may never do it at all, but even contact by email can be hard.

Then there’s asking for help. I fear being vulnerable. I fear being ridiculed. I rarely ask for help.

I’m a grown up. I don’t have an advocate to speak for me. People perhaps would if I asked them to, but how would I begin to ask? Who can I blame for that but me?

When I was first diagnosed I asked about services and was told there weren’t any. I asked about help and was told that whilst I would probably benefit from certain structures, there…

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Best cure for #autistic drama : Menopause!

landscape with mountains
See that peaceful massive rock in the distance? That’s me 🙂

I have to say, ever since I quit “cycling” every month, my autistic life has become So . Much . Easier.

Seriously.

I have gradually lost a ton of anxiety about “what other people will think”, whether or not I fit in, if I’m weird or not, as well as a whole host of other social phobias that used to plague me.

I felt like I was walking around, dragging a long string of tin cans that announced my awkward approach.

It was just wretched.

Since I got off the hormonal roller-coaster, though, everything has gotten so much more mellow. Manageable. Delightful, even. And my strengths are able to come out, versus my deficits.

AND I have a clearer view of what those strengths are.

Whoever’s doing research on the impact of autism on girls and women needs to look at our hormonal profiles. Ideally, they’d come up with some ideas about how we can better navigate the monthly cycle. Because it’s a big friggin’ deal, in so, so many ways.

Here’s hoping they get clued in on that and throw some money at that question, instead of chasing a “cure”.