at last – my cup of really good, really strong coffee

overhead view of cup of coffee beside laptop keyboard on a wooden tableI spent the past four days on a visit with my parents. I didn’t spend the entire time with them, because my partner and I didn’t meet up with them till late afternoon on Friday, and then we had the weekend with them, and they drove home early yesterday morning.

So, all in all, I had about 67 hours with them, with additional time tacked on, before and after to prepare… and then decompress.

It’s a lot to take in. My parents are very much on the Autism Spectrum, and that means they’re alternately delightful and exasperating when it comes to interacting with them from my corner of the Spectrum. They have their ways of doing things, which are (of course, to them) the Only Right Way To Do Things. And everyone who doesn’t do things that way — especially if it’s us kids — is Wrong and Must Be Corrected.

So, I spend a lot of time around my parents on the defensive, never sure what I can or cannot say, because they’re so enthusiastic about promoting and defending their Proper Way Of Doing Things — and punishing everyone who doesn’t comply.

Ugh, it’s exhausting. I love my parents, and we’re getting along better than we ever have in my 52-year relationship with them, but it takes so much out of me.

Plus, when I’m around them, I can’t do my regular routine. They’re so locked into their way of doing things, they have to constantly hijack me to get me on their schedule. And their pace is grueling and break-neck — always going at top speed, always with the brain dumps about their special interests, always talking, talking, talking… which is utterly exhausting when I’m tired and non-verbal. The more tired I am, the more non-verbal I become, so you get the idea…

Now that’s over. My parents went home yesterday morning, and my partner and I had the day to decompress yesterday. The weather was amazing. I actually got to walk the beach and explore at my own pace. And there was no pressure to stick with my parents’ schedule, because their anxiety won’t let them do anything different.

We got to decompress. I got to relax. I had to do a conference call for work, yesterday afternoon, but that was fine, because it was familiar and got me out of my head.

And today, I woke up in my own bed, I got to have my exercise — first thing — I’ve had my breakfast… and now I get to drink my half mug of extremely strong coffee.

Everything’s getting back on track, and that’s a very good thing, indeed.

 

Yes! It’s Friday

I’ve got a million reasons to be happy – I’m Free!

I’ve never been a fan of the whole TGIF thing. Seems to me, if you’re really that unhappy with your life — so unhappy, that the best day of the week is when your regular life is about to go on hold — you should really do something about your life, in general. Why stay stuck, if you can make a change? It’s not always easy, of course, but it can be done.

I still feel that way.

But today I’m really grateful it’s Friday.

‘Cause truth be told, I’m kind of stuck in the job where I am now. It has its high points and its low points, like any job, but I know it’s not where I want to be for the long term. I’m just sort of tolerating it right now.

And I’m in that state of mind that’s all about just getting through this last day and then taking a break from it all and getting back to my own sort of experiences.

Thank God It’s Friday, indeed.

Actually, I’m incredibly lucky, in some ways. I’m able to work from home when I need to. So, I’ve been working from home most of this week. I’ve only been in the office one day, that I can remember. Or maybe it was two? Can’t recall. And that’s nice. It’s when I can remember each and every moment of a week, that I know I’ve had a hard time.

But when I can’t remember… that means I’ve been in a bit of a flow state. And the sh*t that’s hit the fan hasn’t stuck to anything.

That’s a great state to be in.

And here I am.

Well, speaking of work, I should get to it. Just really glad to be here, today.

Very glad, indeed.

 

A little breakfast, a little music, a little writing, then I get on with my day

waterfall with path and stairs beside itI had dreams of being able to kick back and do next to nothing today. That’s going to have to wait till tomorrow. I’ve got too much to do before the day is out, to kick back and do nothing.

  • Drop off a letter at the post office. It has to go out today. It should have been sent out a few days ago, but life got the better of us.
  • Take the recycling to the dump. I’ve been taking the trash down pretty regularly, but there are cartons and bags of recycling that still need to get out. I also need to get rid of old clothes and a bunch of books that were impulse purchases, years ago, and haven’t weathered the test of time. There are donation bins at the dump. I spaced out last week and forgot to drop off the bags of stuff in the back seat of my car. So, this week, I’m making a specific point of it.
  • Return books to the library. I don’t know why I keep getting books out. I have plenty at home. But I can’t resist, somehow. There’s so much to read, so much to explore.
  • Pick up my car from the garageIt’s been an extra week that the worked on it, and it’s high time we got it back.
  • Food shop. Because we need to eat, and when I go to the mechanic, I’ll be near the grocery store that has good fish for sale. We need to eat more fish, so I’ll pick up some, along with some frozen mango. I make a really great piece of cod with honey mustard sauce and mango. It’s really tasty! My mouth is watering.
  • Get my hair cut. I meant to do that last weekend, but I couldn’t get there in time. I’m looking pretty shaggy, these days. Gotta fix that.
  • Clean up around the house more. Do laundry. Reduce the piles of papers, break down the boxes. Sweep out the garage. Move the pieces of the artificial Christmas tree into the basement, to make room in the garage for the car when it comes home from the mechanic. Just get things in order.
  • Collect my tax return supplies, so I know where to find them. I have a folder I started back in January, when all the forms started to come in. So, I’m ahead of the game there. Now I need to get my computer files in order — download bank statements from 2017 so I can calculate the profit/loss of a couple of businesses I’ve had going.
  • Take a nap. This is non-negotiable. I need at least an hour this afternoon. Preferably two. I’ve been getting a lot of exercise, lately, and my body needs to recover. From that, and the rest of life.

It might sound like a lot, but this is a standard Saturday for me. And once I get going, everything just flows. Because I’ve been practicing this for years and years, and I’ve built up skill in all these areas. Believe me, it hasn’t come easy, and I’ve made a lot of mistakes along the way, worn myself out, messed up, fallen to pieces, and put myself back together again. But now I can pretty much put myself on autopilot and just motor through everything. So, all the hard work has been for good. It’s paid off. Hasn’t been easy or pleasant at times, but it’s paid off.

So, I’ll drink my coffee and change my clothes and head out to the dump, where I can bid adieu to the paper, cardboard, plastic, and glass that’s been sitting in bags and boxes in my garage for weeks. Adieu! Adieu! Then on to the next thing.

Most of all, I can’t wait for that nap! A reward for work well-done.

That’s the plan, anyway.

Just a few chores to get done…

rope caulk window in winter
It’s that time of year again.

The nice thing about having time off work, is that there’s no set routine for me to stick to.

The downside of that, is the very same thing — there’s no routine for me to stick with.

So, that means I have to work a little harder during my “time off”. I have to put more thought into how I’m going to spend each day. I have to put more time and energy, period, into everything I do.

It’s ironic — the time when I’m expecting to be able to rest, is the time when I get worn out more. But at least I get my naps in. That’s something.

I’ve got to put rope caulk around my windows today. No excuses. It’s getting into the single digits at night. I’m leaving my spigots dripping a little bit, so my pipes don’t freeze, like they did a few years ago. I’ve got the heat turned up. I have firewood put with easy reach in my garage. And I’ve got three days’ worth of hearty chicken-noodle stew in the refrigerator.

Rope caulk is non-negotiable in this house. Its windows are original to the house, dating back to — gasp — 1972 (younger than me, actually), and they get drafty. Personally, I prefer it that way. Because a tightly locked house is a house that doesn’t breathe. And houses need to breathe. I don’t care for getting trapped in a house with off-gassing from whatever stuff I hauled inside with me. Keeping a slight breeze going in the house keeps the air from stagnating. And it saves me from having to circulate with central air, etc.

Rope caulking is my annual admission of the fact that it’s friggin’ cold outside, and it’s not warming up anytime soon! I can let things go indefinitely, especially because I like to have a little chill in the air at times. But eventually, the New England winter gets the upper hand, and I pull out the rolls of corded putty that gets pressed into the seams and cracks around all the open-able windows in the house.

It’s good practice for me, actually. It helps me focus my attention, and it helps me strengthen my oft-flagging ability to keep my focus on one thing for extended periods of time. Rope caulking all the windows — 8 downstairs and 10 upstairs — isn’t instantaneous. After a while, the caulk makes my fingers tacky, and it becomes a sensory issue. But I know it’s going to happen, pretty much when I get to the the 10th window, so I have no excuse for getting bent out of shape about it. Yes, it’s uncomfortable. Yes, it sets me off. Yes, it makes it hard to concentrate. But that’s where taking a break comes in. And I can always step away for a few minutes to get something to eat or drink, wash my hands, and gather myself before I go back in.

I used to get so bent out of shape, when the caulk would stick to my fingers. But please. That’s just caulk being caulk. And me being me. So, enough of the upset. Just take steps to deal with it. And git ‘er done.

Speaking of which, it’s time to gather up my various breakfast dishes and cups, wash up, and dig out those boxes of rope caulk from the bottom of the pantry storage bin.

They’re in there somewhere. I’m sure of it.

Off I go…

Back to my #autistic routine – woo hoo!

trompe loeil facade on a building
Back to the halls of commerce I go…

I’m going back to work in another hour. Sigh. It’s been wonderful, having this past week (+ 1 day) to myself, to read and write and study and think and not do much of anything.

But it’ll be nice to get back to my regular schedule, too.

I’ve missed having a regular schedule. My partner isn’t on one. She sleeps when she wants and gets up when she wants, and she doesn’t mind eating at different times of the day. Me, I need my schedule. My routine. My predictability. I have a lot going on, and I have a lot of input inundating me, each and every day. So, I don’t have a lot of extra processing resources to sort through the constantly changing variables of a schedule-less life.

I can get more done when I’ve got a timetable and deadlines — as witnessed by my utter inability to complete just a few simple tasks I’d intended to handle during my time off. Once I got away from the structure, everything fell to pieces. Not in a bad way. Just in a disjointed, somewhat “free flowing” (cringe) way.

I’m not a fan of “free flowing” stuff. “Going with the flow” gives me the heebie-jeebies. That’s the technical term for a stomach-knotting anxiety that makes my skin feel like something’s crawling on it, and makes it next to impossible to think.

I really need my routine.

Of course, ideally, I’d have a routine that doesn’t involve dragging myself out into the non-autistic world to contend with all the lack of awareness, the callousness, the cruelty, the thoughtlessness, the sensory overload. Ideally, I wouldn’t have to subject myself to all that for the sake of a paycheck. I’d work out a routine that works for me, and I’d follow it, each and every day. With discipline. And rigor. And productivity-fueled enthusiasm.

It’s a goal.

Anyway, I see time is getting away from me, and I’ve got get moving and get ready for work. I’ve shuffled some of my morning commitments, so I don’t have to plunge myself into the 8:00 a.m. commuter crush. I can get my shower, take my first conference call at home, and then head into the office when everyone has moved along. I like this plan. It works.

And that’s a good way to start back.

It’s unavoidable, so I might as well make the most of it. There’s something good in there to feed me.

Routine.

Had I mentioned, I love my routine? 😉

Making space for my flank pain

pier over the beach, with the ocean in the distance

I’ve had some weird, inexplicable pain in my right side for over a week. Pain tends to come and go with me, and I often find myself with strained muscles, pulled sinews, general soreness, etc. It typically goes away after a few days, so I rarely pay it much mind.

That just comes with the territory when you do your own stunts.

But for over a week, I’ve had some pretty intense soreness in my right lower ribs. I haven’t been able to breathe easily, and laughing, coughing, yawning all send a sharp jab of pain through me. It’s been hard to sleep, and it’s been hard to sleep in. I go to bed later and I wake up early, which doesn’t do much for my frame of mind – and body.

Still, I hadn’t been spending a lot of time thinking about it, researching it, or otherwise paying more attention to it, than the intermittent OUCH! that comes after a sigh, an inhalation, a laugh, or a cough. Until the past few days — after the 7-day mark — when the persistent pain just got to be too much.

I called my doctor’s office and made an appointment. And I did some research. I isolated the experience — what hurts and where… when does it hurt… what did I do differently, lately… what makes it worse or better — and I wrote up some notes. I used a version of the Listening to your Body Worksheet over at AuptimaPress, and I added notes about my symptoms and my concerns.

I really hate going to the doctor. I never feel like I do a good job of communicating what’s going on with me, and by the time I actually see the doctor, I’m often overwhelmed by the sensory experience and not thinking very lucidly. But writing everything down (well, the important pieces, anyway) actually helped me.

The main thing is, I just need to make room in my life for this experience, this pain, this thing that needs to be fixed. Ignoring it wasn’t helping me. Paying attention (hopefully) will help.

The adventure continues.

I love my #autistic routine – but sometimes I need to change it up

picture of a bridge leading out to the sea at sunrise, with a bubble in the foreground enlarging and flipping a section of the bridge upside-down
picture of a bridge leading out to the sea at sunrise, with a bubble in the foreground enlarging and flipping a section of the bridge upside-down

I woke at the usual time, this morning – around 6:45. I rolled over and noted my sleep time in my sleep journal – a predictable 7.25 hours. It’s Saturday, but I am still on schedule.

I’ve had my morning exercise, 20 minutes of riding the exercise bike while checking Twitter, followed by some light stretching and juggling to loosen up my upper body. I lifted weights yesterday, so I want to give myself a break to let my body catch up.

I had my breakfast — a single egg whipped into a froth, then poured into a small non-stick pan and covered for about 10 minutes till it rose like a mini soufflé. I also made myself a cup of coffee while the egg was cooking, making only half a cup because too much caffeine triggers migraines with me, and I already have a bit of a headache this morning. When the egg was ready to eat, I sprinkled some salt and pepper on it and ate my little puffy cake in a meditative state. Somewhere between the 2nd and 3rd bite, I downed a few vitamins — B-Complex to keep my system stabile, and D3 to keep my levels up.

After I eat my egg, I usually just put the dishes in the sink and clean them up later. My partner’s not all that happy about that little habit, but I’m usually deep in thought by the time my little breakfast is done, and I have other things to do than wash and rinse dishes. This morning, though, I cleaned up after myself.

I need to change up  my routine. I love my routine. It keeps me going. But I need to change it up today. So, I gathered some stuff I need to work on today and brought it downstairs from my upstairs study where I was storing it. Some of the things I’ve needed to do for over a year and a half — like setting up a new computer for my partner, who needs to do some audio production and has to use the old Mac that’s served us well, but never seems to have enough space on the drive and needs continuous care to not crash in the middle of a recording session. Those crashes are mini-catastrophes, sometimes wiping out 50 minutes of work, when she just needs another 10 minutes — 10 minutes! — to be done.

My partner does her audio work in the wee hours of the morning, when the world is quiet and she won’t be interrupted. So, there have been times when I’ve been woken up by great wailing and gnashing of teeth at 3 a.m.

And that’s never good. Not for her. Not for me. Not for her projects.

So, this weekend, I’m going to fix that.

I’m also fixing up my study, which has been a kind of “holding pen” for the duration of the past fall… winter… spring. It’s summer, now. Time to get back in there and rearrange things. Set things up. Clear away the piles and piles of research and reading and various interesting gadget acquisitions that seemed like a good idea at the time. I’m a compulsive reader and researcher, and with all the new work being done on autism and various neuro-chemical-biological subjects… I get carried away. Especially with the autism stuff.

I’ve got a whole lot of books I’ve acquired over the past year — all of them deeply interesting to me. But I haven’t had time to read them. I’m now in a situation where my study is more like a formal library than anything else. And like the neighborhood library, I haven’t read most of the books on the shelves. But I want to. And it’s my intention to start. Actually, I’ve already started, so I’m making good on my intention. That’s good. I need that.

Truth be told, my routine sometimes stops me from living my life the best I possibly can. It keeps me from doing things I want and need to do because, well, they’re not part of my routine. It keeps me from doing common-sensical things like:

  • Shopping at an early hour in the day, before the crowds all show up.
  • Cleaning my house on a regular basis.
  • Keeping my study organized.
  • Running extra errands that need to be done right away (not months later).
  • Setting up a top-of-the-line computer (a digital audio production workstation, really) as soon as I buy it, and getting that running.
  • Sewing torn clothing.
  • Keeping my garage clear of clutter.
  • Etc.

You get the point. I have my morning routine: rise, exercise, eat, sit down to write for a while… then get on with the day. On weekdays, I’ll often get on a conference call at 8:00 or 9:00 a.m. (after I’m done writing) and then get going to work around 9:30 or so, arrive at the office around 10, then stay till 5:30 or 6:00 or 6:30, when I’ve finished up for the day and/or the traffic has calmed down. On weekends, I’ll write all morning, maybe take a walk, have a little lunch, run the trash to the dump or do some shopping, take a nap, and get up to putter around the house or read some more. Then it’s time to make supper, and my partner and I will have our “dinner and a movie” in front of the t.v.

All of this keeps me moving forward predicatably. But sometimes it also blocks me, and I have to change things up. Sometimes I need to do more than the usual. Sometimes I need to do something very different from the routine. And I think I need to break things up a bit more, actually.

Like last weekend, my partner and I went to visit a friend in the hospital. We ended up having a really good day of it, and we had a nice little take-out dinner from a cool little cafe we found a few months ago. Unfortunately, I had a bad reaction to the food, and it’s taken me all week to tame down my system and get feeling relatively normal again, but it was really fun while it lasted.

Like for the past few weeks, I’ve been getting an earlier start than usual, getting in to the office around 8:30 or 9:00, instead of 10:00 or 10:30. It really makes a difference in how much I can get done, having those extra couple of hours in the day at the office (instead of at home). Of course, I’m completely . wiped . out . after the full week, so I pay a price.

Like, last night, instead of sitting down to read and write, I proverbially put my head down and “made a run at” my study, rearranging and removing stuff and getting the books on the shelves and the notebooks into a box (that’s more appropriate for my notebooks). I was amazed to see just how broadly I’ve been spreading my interests and efforts, over the years. I get fixated on certain ideas that I think will be great — just great! — but I tend to fixate on too many at the same time, so none of them actually ever come to fruition. That’s a habit I need to change, and looking through all my old notebooks was a great wake-up call for me, last night.

I made good progress, last evening. And it was good. Dinner was late, and I got to bed later than I should have. But still. It was a really productive time, and now I can go back in my study without triggering a panic attack and feeling like a total loser and waste of space. Not managing my own space has a really negative impact on my self-esteem. I actually have a study of my own, packed full of all the stuff I love the most. After growing up in a crowded house where I had no space that was all my own, where we kids were “stacked” on top of each other, and there was literally just a square meter-and-a-half in the middle of my shared bedroom to move around in… after several years of living with a partner who was controlling in the extreme and demanded silence and total obedience… after living in one space after another that was smallish and didn’t always have a door on my workspace and certainly didn’t have the amazing view of the back yard and wildlife that I have now… it’s not something to take for granted.

I don’t take that for granted. At all. I just haven’t done a very exemplary job of stewarding my space, my time, my energies. I mean, I’ve managed. But making the most of it all? That, I have not done.

I’m not being irrationally hard on myself.  I know I have executive function issues. And I get so tired… But I’m also a grown-up who knows how to handle problematic situations when they arise. And my routine has become a problem.

So, I’m doing something about it. I’ll finish this blog post, then head out to run errands that need to be done. Or maybe I’ll crack open the box of that computer and — after 18 months of sitting idle — boot it up, at last. I know the 1-year warranty has lapsed, and I don’t know what kind of support I can get for it, but if I get in a jam, I’ll just check online. Or give someone a call.

Whatever I choose to do first, I’m going to do it. And get moving. Get into the day. Give myself a running start and settle unfinished business. It’s important. To me. To those who depend on me. And I haven’t been doing a great job of keeping up with the variety of things I need to do. I’ll move past the embarrassment about this, move past the dismay that such “simple” things tend to be so challenging for me, just shrug my shoulders at the fact that I’ve let so many important things slide. And do what I can.

Because I can.

And I should.

And I shall.

I do love my routine. But it doesn’t always love me back the way it should.

Just get me back to my routine

Herakles and the Hydra Water Jar (Etruscan, c. 525 BC) - Herakles clubs the Hydra, while a crab assists it by attacking Herakles
I feel like I’ve been battling a mythical beast that grows another three heads, every time I chop one off.

It’s been an eventful month.

And yes, I’m fully aware that I’m autistic 😉

Now, it’s time to get back to my routine, g*ddammit.

Seriously. It really, really is.

I had such great plans for April. I was going to “kick it” on my writing and reading, make some inroads in my posting, finalize my memoir, and lay a solid foundation for Auptima Press, my new venture with Toni Boucher (and a few other contributors). I was going to launch myself into a dedicated exploration of autism in my own life, peering into nooks and crannies where there’s still so much to be learned. I was going to regiment myself carefully, budget my time and energy, and really crank out some quality work, borne of careful consideration and all the motivation a member of a marginalized group can muster during a month dedicated to raising awareness about their “plight” (Oh, we poor dears… 😉

But then… life.

Illness. Industrial-strength. Live-and-death-grade medical condition. End-of-life conversations. Advance directives and living wills and powers of attorney, oh my.

And then… death.

The loss of my obviously autistic aunt — the woman who never, ever would have been missed or mis-diagnosed, had they known then, what they know now. Even in our still-developing state of under-awareness, she never would have slipped through the cracks. Not like she did, when she was a little girl. Nope. Not a chance. Her passing hit me hard. Much harder than I expected. I’m still not fully recovered, to be honest.

And now… life again.

Lots of it. Return to an over-full, busy schedule, a mad dash towards a series of shifting-target goals at work, as well as at home. I have obligations. More obligations than I’d like, but enough to let me know that I am — indeed — a valued part of the community. And that’s fine. That’s all very nice.

But I just need my routine again.

I’m peevish and irritable. I’m still recovering from poison ivy that’s not terribly itchy or painful, but gums up my routine, because I have to apply cream… and then the cream makes my hands feel weird, which I hate. I need to feel things with my hands — dry and firm and un-slippery. And that hasn’t been possible, what with all the lotions and potions I’ve been applying. Not to mention the weird ways that absorbing corticosteroids and Benadryl (even in a topical cream) have been screwing up my sensory processing.

Augh! I need a break.

Clearly.

But for me, a break isn’t just about checking out of the day-to-day. Far from it. For me, a break involves going back to my standard routine and being able to follow it to a “T”.

  • Get up when I’m no longer tired — around 6:00 a.m. or so.
  • Ride my exercise bike while I listen to electronica music and check in with Twitter, followed by some light weight lifting.
  • Fix my breakfast and eat it in peace, taking my vitamins 2/3 of the way through.
  • Sitting down to read and write and blog and check email and center myself for the day.
  • Get ready for work — and NOT have to decide what to wear, because I’m back to my usual weekly “uniform” of certain clothes on certain days.
  • Drive to work at a steady pace, after rush hour is over, and the traffic is more civilized.
  • Work my day through, getting in a 30-minute swim, around 3 p.m.
  • Head for home around 6:15, stopping to shop for supper on the way home.
  • Put supper on the stove to cook/stew, while I sit down to read/write some more.
  • Chat with my partner about her day.
  • Go to bed. Do some yoga poses, then lie there for a few minutes, till sleep comes.
  • And then do it all over again.

Is it so terrible, to want this exact same sequence to happen, day in and day out? I think not. Is it so much to ask, that I have this same routine, each and every workday? I can’t see why it should be.

I don’t want to stop the routine. I want to get back to it. That’s my “break”. That’s my relief. Knowing that my life is on track, and I’m making progress in meaningful ways. That’s what matters most to me.

And slowly but surely, it’s getting back to that… though none too soon.

It’ll come. It’ll come. I keep telling myself.

It’ll come.

 

It . is . so . good . to . be . back

lone tree in fog with mist and frost on the ground
I’m so happy to be back home, back to my normal routine, back to my regular pace and way of doing things. The sickening migraine that was dragging me down, I’m able to relax again, I am laughing for real and from my belly, instead of that stressed-out sound that escapes from my mouth when I’m around my workmates in a car driving to the office, I’m eating regularly and having the kinds of foods I want to eat, and I don’t have that nasty film of aftertaste of all-the-food-I-never-normally-eat coating the inside of my mouth.

I can rest. I can relax. I can read. I can think. I’m several orders more functional now, than I was just 24 hours ago.

The difference is striking.

And as I’m resting, ideas are coming to mind. I’m able to read the research papers I printed out, and I’m able to make sense of them. My brain is also making some excellent connections (well, they seem excellent to me, anyway), and I’m finding it possible to actually think again.

Filling in the blanks, as I go… And looking at new directions for my work and my vocation. Keeping this blog is more than a hobby. It’s actually a vocation for me — a mission I have, that ties in with my overall passion for publishing. So much money and time and research energy is spent on researching “causes and cures” for autism, it’s pretty freaky… and the organizations that try to serve us, often fall short — and also fall into the traps of person-first concepts that actually undermine their state goals, by reducing us autistic humans to sufferers of a disorder that must be dealt with to relieve the pain of all those who are made uncomfortable by our presence/existence.

So, that’s why I’m here. I’m on a mission, you could say, to put a voice to the experience of one woman on the autism spectrum. I’ve known for nearly 20 years, that I’m squarely on the spectrum. I can’t recall ever taking an assessment where I didn’t score within the range. And to those who say, “Oh, you’re just one of those online test-takers who’s using that to legitimize your claims,” Yes, the AQ test is clinically recognized for research purposes,  as is the RAADS, both of which I’ve taken a number of times).

Anyway, I’m here on the spectrum, I’ve struggled terribly with things that never should have actually been a problem — and had I known what “the deal was” with me, those many years ago… and had I possessed an understanding of the core issues I was facing, as well as the nature of them… well, I’m convinced that things would have actually been very different for me. Some folks take their diagnostic info and decide that they’re doomed. Some people are just naturally inclined to put a negative spin on everything, as well as invested in believing that — whatever proverbial cards they’ve been dealt — they’re stuck with their situation, no matter what they may do to try.

I, on the other hand, have always believed that the human system is mutable and capable of change. We learn. We adapt. And we can often choose which direction we want to change and adapt towards. I think it’s a personality thing — a complex combination of nature and nurture. But it’s also a choice. Plenty of people will tell me otherwise, but I’ve seen people from very tough situations decide to make the best of it, and they have. Against all odds. The evidence I’ve seen supports my belief that at least some of what we “are stuck with” is a direct result of our choices and habits.

Okay, I’ll get off my proverbial soapbox, now.

Bottom line is, I’m able to think again! Woo hoo! W 🙂 🙂 T   W 🙂 🙂 T!

And three things have occurred to me, just this morning, building on my reading from last night and this morning:

Why non-verbal children are “problematic” for their parents and society

  • Becoming a new parent is stressful and disorienting. Parents are under considerable pressure, both internally and externally, to “produce proper children” who integrate into society and become productive citizens.
  • Verbalizing = stress-reducing. It stimulates the vagus nerve to trigger the parasympathetic nervous system, and it also lets individuals find community and support. Verbalizing is one of the most pervasive (and required – though not always recognized) modes of stress relief, and children are expected (even required) to speak — both as a source of stress relief for the parents, and a sign that the parents are instilling in them one of the most critical communication / community building tools in the human repertoire.
  • If parents don’t have any other techniques for relieving stress, they get even more stressed. They get hit from all sides — they are failing to be adequate parents with a speaking child AND they lose a critical stress-relieving tactic (speaking interactively with their child) — all adding to their stress levels.
  • Prolonged stress blocks learning, creative thinking and problem-solving. It heightens and distorts the issues at hand, and put parents on the defensive — which can morph into going on the offense. Perpetual fight-flight state ensues.
  • Autistic children can be highly empathic and sensitive to negative, critical emotions, and the fight-flight drama environment around them can add to their own stress levels, thus dampening their adaptation and growth.
  • Downward spiral of ever-increasing stress and added difficulties for all sides.
  • Possible approach: Teach alternative stress reduction techniques to parents of autistic kids, as well as autistic kids, themselves. Address the stressed-out, strung-out underlying condition to foster greater creativity, learning, adaptation for all involved.

The problem of screening out autism with other conditions

  • Mental health issues and organic conditions such as brain injury or a developmental disorder can “disqualify” someone from an autism diagnosis, offering a more obvious explanation for why someone is behaving the way they are.
    • This can cause significant issues, as the associated condition may actually be exacerbated by neglect of autistic issues, confounding treatment and sending an autistic person down an extended medical/clinical “boondoggle”, filled with confusion and ill-chosen pharmaceutical tactics.
    • The co-occurring conditions may be heightened and the symptoms made all the more intolerable, thanks to the “intense world” of autism, and unless the issues that come with our distinct autistic neurotype are recognized, understood, and addressed, our other conditions will necessarily be further complicated, made more intense, and confront clinicians with a puzzling array of symptoms that just don’t make any sense — or seem made-up (to get attention, obtain drugs, etc.)
  • If we consider that autism is a distinct neurotype, rather than a disorder, then we can account for co-occurring conditions and gain a deeper understanding of not only how autism affects us, but the other condition(s) we’re dealing with.
  • By taking an inclusive, co-occurring approach that factors in the “substrate” of autism in the overall picture, we can truly appreciate the complexity and richness of the autism neurotype.
  • We can also potentially gain greater insight into the intricacies of autism – learning from extreme cases which exaggerate the interplays of autism with co-occurring conditions, and better learning how to understand and handle things at a global level.

Alexithymia isn’t only a problem of not understanding our emotions

  • It’s also a problem of not having adequate words to describe what we’re feeling
    • Either words are too simplistic – there’s more to it than we have words to describe
    • Or our feeling state is so intense and so variable, mutable, that we can’t come up with words quickly enough to describe them. At all.
    • Or we don’t feel that others will actually understand us, because they’re so caught up in their own over-simplified perceptions, and they don’t realize there’s more to the story.
  • We need more and better ways of describing our emotions. There are new projects underway to do this – e.g.,  The Dictionary of Obscure Sorrows
  • We need to use old words that have fallen out of use.
  • By enlarging our vocabulary and actively finding ways to put into words what it is we autistic folks are feeling (can also be through art and music), we might possibly dispel the misconception that we feel nothing, and that we can’t describe what we’re feeling because we’re internally deficient.
  • Maybe, just maybe, it’s the world we live in, that’s deficient.

So, there are the three Big Ideas I had this morning, after getting back on my routine and having the chance to actually read and think about what I’ve read.

It’s amazing what can happen, when I’m simply allowed to structure my life the way I need it to be structured.

It’s magic. Pure magic.


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I’m goin’ in…

lone tree in the distance, across a snowy field
This.

 

I
am
so
exhausted
by
all
this
phone
calling
and
medical
stuff.

I spent much of yesterday on the phone.

God. Help. Me. What a friggin’ nightmare. By the end of the day, I was incoherent. But I had to attend a town meeting, where I was expected to take in a whole bunch of conflicting and contentious information (in front of a room full of angry people, no less!), and so off I went to my board meeting. I got through it. I got through the day. And more medically related phone calls this morning continued the theme.

Part of me wants to stay home today and just rest. Take the day off. Then again, the disruptions to my daily schedule have been adding to my stress, and just getting back my regular routine is by far the most relaxing thing for me. It keeps me busy. I need to keep busy. I need some structure and order to my life. I need to have something to show for my efforts, instead of just more data and mountains of helpless frustration.

I also need to swim – and the pool is at the fitness center at work. God, how I need to swim.

So, off I go to get my shower and get into the day.

I’ve washed the soft, comfy mock turtleneck I’ll be wearing to the women and autism conference in the Boston area on Friday (woot! so excited to go!). I have my schedule all worked out for the day. All I really want, is to settle into a good cadence, listen to music, have a normal, regular, predictable, boring day.

For once.

Off I go…