Change

I ordered my own copy, and until it arrives, I’ll content myself with this.

Very nice. 🙂

Autism and expectations

I’m in the middle of reading Luke Beardon’s new book, “Autism and Asperger Syndrome in Adults” and I’ve paused to splurge this. I am frantically typing because I want to get back to it, but didn’t want to lose my train of thought.

I’m on the chapter about autistic resistance to change. Luke is sympathetically describing why, in a life of instability, we may need the small things to always be the same. It makes sense. It all makes sense. He does that. He’s one of those sense-makers. We need more of them.

It got me thinking about my routines, I have a lot of them. Every day I wake up about an hour before my alarm goes off, I have a coffee (always the same way), and one of those effervescent vitamin-energy-godawful-tasting things in a pint of water. That’s my breakfast.

You may say breakfast is the most important…

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Autism and the stress of a simple walk

I was going to go out for a walk, this morning. Then I thought about it. What all it would entail. I’m still inside, hours later.

askpergers

I have written a lot about sensory overload, and the impact this has on me and other autistic people, but there might be an idea that to get this overload I have to go somewhere busy, or noisy. This is not the case. In fact just the act of walking my dogs in the streets for fifteen minutes can be full of so much sensory and social stress that I become overloaded by the time I get back home. I would like to use this blog to explain how even something that sounds so small can be so full of stress. So let’s use the idea of walking the dogs as an example for now – the point being that I don’t have to go anywhere; I am not going shopping or to a meeting at the end of the walk, in fact I am just walking around and and…

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Just for the record, I was absolutely spot-on in dreading this trip. 

Yesterday was a less-than-delightful voyage to the 3rd ring of hell, from 4am till midnight. 

III. GLUTTONY: “The circle itself is a living abomination, a hellish digestive system revealing horrific faces with mouths ready to devour the gluttons over and over for eternity.”

Gluttons on every side. Greedy, selfish, with systems in place to assuage their hungers at every turn.  

Come to think of it, I visited a number of other circles of hell, but I have no energy to elucidate them all. This may come in June, after I get more distance from the whole experience.   

Yesterday… ugh. One thing after another. Not terrible things, necessarily, but highly demanding things that – even when done well, they just suck the life force from you and make it impossible to know if you’re going to handle the next situation correctly.

It all turned out OK, in the end, and I’m getting a break this morning, but on so many levels, as invigorating as it is, it’s really truly wretched. And there are 3 more days of this.

Of course I’ll make it through in fine shape, I’ll be the consummate family member and reconnect and share quality time w/ others on their terms, and then I’ll spend the month of June recovering. 

But seriously, this is much more of a challenge for me than anyone can guess. Mission accomplished. They will never, ever know what this trip’s impact has been to me and my life. If they find out, then I become some pitiable “poor thing” and lose their regard…. As w/ most ppl who cannot fathom how you navigate certain challenges and still present as a regular person. 

Pity is an insult to me. Not going there. Not w/ this crowd.

Well… At least it’s a round-trip to the 7th ring of hell, not a one-way 😏

Sharing: Do Not Open: Confidential – From Life Asper Margo

night city lights
Some of us are destined to be lights in the darkness.

“It is no measure of health to be well adjusted to a profoundly sick society.”
– Jiddu Krishnamurti

The greatest minds of the world went against the grain. No major breakthroughs have happened by people who follow the herd. When it comes to following orders, the world is a jungle and no matter how many rules exist to tame its creatures, many are still captives of nature. The only real difference between people are the varying degrees of emancipation from their lower nature. Life is a constant struggle between survival and virtue. There’s a million ways to get ahead, but not everyone is equipped with the tools to do so in a kosher way. Remembering this helps me have compassion for even the most ruthless or abased of us. I have faith in humanity. Whether we’re the walking-dead, the walking-sleeping, or the walking-woke, we’re all walking in the same direction. Our pace is just different levels of consciousness.

Source: Do Not Open: Confidential – Life Asper Margo

(My) Asperger’s / autism and emptiness 

Yeah, this.

the silent wave

Usually, I don’t feel empty–at least, not when others would expect me to. I don’t feel empty when I’m alone, for example. I don’t tend to feel empty when I’m not doing anything except staring into space and thinking.

My Asperger’s/autism seems to protect me from feeling lonely or empty when I’m “supposed to”–that is, during times when “everyone else” would.

Sometimes, however, emptiness creeps in, like an unwanted houseguest. It intrudes when one might least expect it, times when there’s no “logical” reason for it.

It surprises me sometimes. It strikes at interesting times.

I’ve been working on trying to identify the source(s). Here’s what I’ve come up with so far…

When I feel empty…

Sometimes it comes from feeling insignificant. When I feel my voice has been steamrolled over, drowned out in the din of extroverts, overridden by someone else’s value system. What I would like or want…

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My very ordered “disordered” life

cable span bridge sliced in three sectionsIt always puzzles me, when people call Autism a “disorder”. Seems to me, a lot of autistic folks have a hell of a lot more order in their lives than the rest of the world.

I have my routines. I have my regular stuff done at regular times of the day. I have my regular activities pursued at regular intervals. I have a really great cadence which, unless it’s interrupted, allows me to get a whole lot done in a very small window of time. In the course of an average day, I can have a to-do list that runs off the page of the 4×6″ stickie note I keep in my daily minder. And I will get everything done — and then some — in a seamless flow of “Okay, that’s done – what’s next?”

I tell people what I do each day, and they shake their heads and tell me that I do “too much”. But for me, that’s just how things flow. In fact, everything works better for me, if I have a whole lot of stuff lined up in a seemingly impossible jumble of imperatives.

Something about “juggling” (it’s not that at all, come to think of it) stimulates my visual-spatial thinking, prompting me to see the world in a very different way than the verbal, sequential folks who surround me. My way may look like “controlled chaos” to some, but it’s nothing of the kind.

It’s all very orderly, I have to say.

It might not make a lot of sense to others. Of course it doesn’t. Not if those others are neurotypical. Not if those others are not visually-spatially inclined. Not if those others’ priorities are with skating along in a standard-issue life, doing what they’re told, living up to others’ expectations, and fulfilling the requirements laid out for them by society at large. In some cases, you need only meet the basic requirements of mainstream society, to get by. Assemble the right kind of family. Get the right kind of job. Wear the right clothes. Drive the right car. Buy the right stuff — and make sure everybody knows about it. And you’re set.

That doesn’t work with me. I have priorities other than social acceptance and accruing stuff. Even if I do try to pay attention to those things (and I do try, every now and then), I rapidly lose interest, because they really serve no greater purpose in life, other than to make me feel a little better about my lot. I want to change my lot in life, not make a grudging peace with it and make myself comfortable till the grim end comes.

And so, the rationale and the reasons behind creating certain kinds of “order” in my life evaporate. Because they just don’t work for me.

Now, if you turn things around and turn a lens on the rest of the world from my perspective, all the “disordered parts of my life start to look very ordered, indeed. There’s an excellent reason for everything I do, and chances are, I’ve given it a whole lot of thought before starting to do it. Even the things that I haven’t deliberately put in place, if they’re in my life, they serve a vital purpose. Or they wouldn’t be part of it.

The ritual I follow each morning serves to get me up and going in the morning in an efficient and energizing way, without needing to spend too much time on reinventing the wheel of my morning activities.

The specific sequence I follow to get myself groomed, exercised and fed each morning, I’ve developed over years of practice and trial-and-error. It would take too long to explain each step, to go into it now. Just know that the specific sequence I’ve developed has been for a very good reason.

How I get to work, how I set up for my daily activities, the times I eat, the things I do to perk myself up or calm myself down… it’s all for a reason. For a number of reasons, actually.

If people (friends, family, loved-ones, clinicians, researchers) would look more closely, they’d see the reasons. And if they could spend a day in my shoes, living in my own experience, they’d totally see the logic of it. And they’d congratulate me for coming up with such an elegant system.

Ultimately, I think the origin of at least some of the “disorder” talk is the lack of understanding among researchers. And parents. And loved-ones. And, well, anyone who isn’t privy to the logic of my / our systems. Those who don’t understand Autistic ways and thought patterns. It’s easy to be put off by something foreign and unfamiliar, and (often-times) that would be us.

It would be wonderful if we didn’t have to verbalize everything for folks who see us as disordered… if they could actually experience our lives as we do. Maybe virtual reality will make that possible, someday. I think it already is, actually. But it’s going to take more than a VR session to get people educated and informed.

We’ve got our work cut out for us, that’s for sure.

In the meantime, I’ll go about my business and tend to my systems, my own individual order.

Regardless of what others have to say about it.

Sharing How does it feel, to live in my “own world” ~ Renata Jurkevythz – from Spectrum Women

A very common statement people make about autistics is how they “live in their own world”. For non-autistics it can very much look like the person is locked in, in a parallel world, not acknowledging what goes on around them. For each individual on the autism spectrum, this “inner world” definitely feels different and may have an effect on their interactions with the world around them. Here, I want to explain my personal experience of being in my inner world. Some may resonate with my personal experience and for others it may be completely different. But as human beings, we are all unique, whether we are autistic or not.

With that said, I want to explain about how this experience feels to me, to live in my own world. I live in a wildly different world, even though I appear to “function” very similarly to people outside, therefore not looking so different in their eyes. My reality feels like being an alien of sorts in a constant struggle to understand and adapt to this weird planet I was put in. I know this analogy is so clichéd, but it is the perfect explanation. The thing is, even when I’m doing regular everyday chores, I’m focusing really hard on keeping myself in the “outside world”. Some days are easier, some days are harder… My inner world is an all-powerful gravity force that keeps trying to pull me in, every second of every day.

 

Read the rest of this great piece here: How does it feel, to live in my “own world” ~ Renata Jurkevythz – Spectrum Women