blue lights won’t help me

This is a great post! Very timely (of course!)

Michelle Sutton

It’s April. I’m probably supposed to say “Happy Autism Awareness Month”, but I’m not going to. Being autistic in April is hard. I don’t need you to be aware of autism. Honestly. I don’t.

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On waking up… and opting out

sleeping foxI just woke up from a 3 1/2 hour nap. I lay down at 3:30 PM, expecting to sleep maybe an hour or so. I set my alarm for 6:30 PM, just in case I overslept. I still had some work to do from the day – I worked from home today, thanks to the supposedly monster snowstorm we were going to get (but fortunately never materialized) – and I wanted to just finish up a few things before calling it a day.

I must’ve had the volume turned down on my phone, though, because I apparently slept through the alarm and woke up shortly before 7:00 PM. As though rising rapidly from an underwater dive, I felt myself rising into consciousness… and it was a gentle rise, as though my lungs were still full of air, and I could take my time.

Looking at my phone, I was disoriented and confused. What time was it? What day was it? Where was I? Outside, it was starting to get dark, and for a moment I didn’t know if it was morning or evening. But when I got my bearings, and I realized it was nearly 7 PM and I was lying warm in my comfortable bed in my bedroom, without any more pressures of the week to deal with, a flood of relief washed over me.

I actually got some rest.

The executive function coach I see weekly is up on all the latest sleep research, and she cautions against taking naps during the day. She has two children and a husband and a very demanding career. She is on the go from morning till night, and not only does she have her own private practice, but she also teaches at one of the most prestigious medical schools on the planet, and she is on staff at one of the best hospitals in the nation. She has a lot going on, and it’s not uncommon for her to run late for just about everything she does in the course of each day.

She thinks I shouldn’t nap.

When I tell her about getting a blessed extra shot of sleep on my work-from-home days, she shakes her head and tut-tuts with a look down her nose – literally. She says it’s not good to get in the habit of napping during the day. She says it can disrupt my normal circadian rhythm. She says it’s not the sort of thing that should become a regular part of my routine, because it can keep me from feeling tired and getting to sleep. She knows that I have trouble getting to sleep some nights, and she knows that I often wake up before I should. This is not news to anyone who is on the autism spectrum. It’s common, and it’s vexing. And as a result, a nap is exactly what I need, sometimes.

In fact, if I don’t get a nap, some days I’m so tired, I can’t fall asleep. And I get into a self-perpetuating cycle that’s well nigh impossible to correct.

And her lectures about avoiding naps strike me as about the worst kind of advice you could give to anyone – especially an autistic person. She’s in a position of power, a position of influence. And her input will necessarily carry more weight than an article in a “health” magazine at the grocery store checkout line. I’m wired that way. I can certainly correct myself and train myself to have a healthy skepticism of authority figures who are (ahem) batshit, but that takes extra work. And I’m not sure I should even have to. I know, I know, I’m being naive and overly trusting, but you’d think that at least a modicum of humility — as well as attempting to understand the broader spectrum of human behavior — would be standard operating procedure. Ah, me… being such an Aspie again.

Anyway, we don’t really talk about my autism. If she hasn’t mentioned it by now, she’s never going to mention it. She specializes in assessing young boys, in any case, so I’m sure she’s got the standard-issue blind spots that typify mainstream autism “awareness”.  I’m not sure she’d really believe me, if I did disclose “come out” to her, and I have better things to do with my time than try to convince non-believers.

In point of fact, so many of the neurotypical assumptions about what is normal and abnormal, what is acceptable and unacceptable, what is standard-issue and what is unique and noteworthy, well, they just don’t apply to people like me. That includes how we move through the world. How we interact. How we function at the most fundamental level. Lord knows, I – and so many other autistic folks – have tried to make the standards apply. We’ve crammed ourselves into tiny little boxes, tried to fit ourselves into narrow definitions of how we should be, and we’ve often punished ourselves intensely for not living up to others’ expectations. And like so many other areas of life, the official rules for sleeping and napping simply don’t apply, in my case.

They can’t.

See, what my counselor doesn’t know, apparently, is how hard it is to simply get through each day as the person I am – how much work it is, how draining it is, how many resources are required to think my way through, function with a modicum of expected levels of performance, and just to keep up with the regular routines that the rest of the world seems to think are good ideas. From the moment I wake up in the morning till the moment I lie down at night, I am in some sort of discomfort or pain. I am confused about something. I am trying to catch up with something. I am working overtime, just keeping the most boring and essential things going, like a regular eating schedule, regular exercise, dressing and cleaning myself and doing all the things that just go along with participating in life as a responsible adult. I have a full-time job, which I can often managed to “fudge”, simulating efficiencies and playing the part of a productive worker and shifting my hours to make it just barely bearable.

The downside of my proficiency is that it really kicks the crap out of me. I start each day with discomfort and pain. I roll my aching body out of bed, change into my day clothes in a cold room, standing on a hard floor, feeling the pain of cold air on my bare skin. The next thing I do is wobble down the hall to the bathroom where I wash my face in cold water, which is not comfortable at all. It hurts. It shocks. It’s usually not refreshing. I do it to wake myself up, because that’s part of my morning routine, and if I don’t, I’m going to be pretty much of a zombie for the rest of the morning. Some mornings it’s bracing, but it’s not the sort of thing a person does to feel comfortable. I do it for a specific purpose, and like so many other purpose-driven things in my life, there is discomfort and pain involved in doing exactly that. So, yeah, after day after day of that kind of experience, all of my normal resources are pretty much depleted by Wednesday afternoon, but Thursday and Friday still remain to get through, so there it is.

I’m not complaining. I’m not saying that my life is a horrible, brutal slog that drags me from one pain-filled moment to the next, in the course of every day. I’m not saying this to get sympathy or to make anyone feel badly for me or even show the world how challenging it is to be autistic. It’s simply a fact. And the fact of the matter is, after hours and hours of this sort of experience of the course of each day, the only thing I want – that I crave – by Friday afternoon is a good nap. Hell, the only thing I want by mid-afternoon on most days is a nap. Even just 20 minutes will do.

But, supposedly that is bad for me. Supposedly that is doing me more harm than good.

And to the people who say that I should not be napping when I am so bone tired and so depleted that you could wring me out and getting nothing but tears, I have this thought:

No matter what your research studies may say, no matter what your official standards may be, you do not have the right to deny me what comfort and what relief I can get in the course of a long and demanding day, or at the end of a depleting week. If you think for a moment that I can adequately get through the day without a nap in the afternoon, then you have no idea just how tired I really get, and you have no idea of the debilitating impact that has on my cognition, my functionality, my sense of self in the world, my ability to earn a living, as well as the extent of all my other responsibilities in this life. Anyone who denies me a nap is betraying their coarseness, their callowness, their insensitivity and their ignorance about exactly what it takes to get through life on the autism spectrum. And I categorically deny their right to tell me, one way or the other, how I should be taking care of my body, my mind, the whole of my life.

In short, you’re wrong. And I reserve the right to completely ignore your professional opinion, your mis-guided guidance.

I’m a stoic. I’ve been this way since I was a young girl. It suits me. And I frankly have no expectation that my life can continue apace without healthy dose of stoicism to get me by. But life isn’t all about using pain to build character. It’s not all about embracing occasional anguish for the sake of conditioning yourself against it in the future. It’s not just an exercise in inuring yourself against the unavoidable slings an arrows that life invariably throws at you. Yes, it’s important to do that. But sometimes, you’ve got to give yourself a break.

Sometimes, I just need a damn’ nap.

We need to stop apologising.

These things come with practice. It’s an imperfect and extended process, and the more we practice, the better we become.

The Misadventures of Mama Pineapple

The other day, I was attending another SEED workshop. This time, the focus was on disability and social class (we’d already delved deep into race, gender and sexuality), and I wassuper-keen, as always, to get into the discussion. I felt I had plenty to say on this particular subject, and plenty I hoped to learn from others as well.

Unfortunately, the projection equipment in the training room was faulty. It had been crackling horribly during the previous workshop when we were watching a video, and one of the facilitators had brought her laptop out of the room and given me headphones so I could watch it separately from the rest of the group and avoid the painful noise. But this time, despite reassurances from the managers of the venue that the fault had been fixed, the speakers werecrackling violently and excrutiatingly even when there was no audio being played

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Autism Appreciation

Yes to this.

Eclectic Autistic

Ah, yes. Autism Awareness Month.

Once more, we meet again.

(Ok, it really starts tomorrow, but I’m already looking over the horizon in weary resignation.)

Last April was my first time writing about this phenomenon, as it was my first time experiencing it…well, no, not my first time as an autistic person, because I’d been that all along. But it was my first time knowing that I was autistic, knowing that I was one of the people the world was allegedly being made aware of.

Did all that awareness work? It hadn’t up to that point; as I wrote last year, all of the previous “awareness” months hadn’t made me aware that I was autistic, so clearly the type of “awareness” being spread was not so helpful in that regard. From the generally baffled and surprised reaction I’ve gotten from people as I’ve started to tell them I was…

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Philosophical Reboot – Getting back to my #autistic #stoic life

two stacks of rocks beside a rushing stream
This would be the ideal – to keep steady in the midst of the rushing streams of life

So, this is interesting. I’ve been an on-again / off-again stoic, since I was a little kid, trying to find ways to manage my sensory / anxiety / info overwhelm issues and still stay functional in the world. I was raised in a very religious (and Aspie-fied) household, and self-control always figured prominently in our family ethos.

Hold your sh*t. Keep it together. Self-possession and grace under pressure were held in the highest esteem. And of course, since I wanted to be held in high esteem, I did my best to keep it together.

I learned, early on, to not be too demonstrative about my emotional upheavals. Nobody wanted to hear about them, anyway, so what was the point of expressing them? Plus, if I “got out of hand”, I was literally pulled back into line, and the touch on my arms, hands, back, shoulders… it was excruciating. So, I learned pretty early on to not let my inner drama “soak through” to my external expression.

All this sound violent and coercive to me now, and I suppose it was, to some extent. It was no different than how my own parents were raised, though. It was “how things were done”, and when you disregard the discomfort and anguish, I suppose it actually helped me in significant ways.

I know it’s common to find fault with tough circumstances while growing up as a sign of abuse that should be eradicated, but whether my parents were managing me, or the neurotypical world was imposing on me, it was still formative in ways that have stood me in good stead as an adult. I learned from a young age, how to mask. I learned how to blend and camouflage my issues. And while that’s been a source of some pretty intense suffering, it’s nevertheless enabled me to develop a pretty impressive stoic ability to carry on, despite all the worst external conditions.

Stoicism suits me. It truly does. It’s not a practice of cramming down all your emotions, shoving them out of sight and never dealing with any of them. Au contraire. It’s the practice of living your life regardless of what happens to you. It’s a philosophy of personal autonomy in the face of uncontrollable adversity and conditions you’d never willingly choose for yourself. Rather than disconnecting you from your feelings, it connects you with them on a deep, autonomous level, where you choose what you will feel, and how you will experience your life, rather than having it dictated to you by outside conditions.

I know crappy stuff is going to happen to me. It always does. Life itself can be a losing proposition with me. Everyday I get up, I have no idea — and I mean no idea — how I’m going to do that day. I have no idea how much pain I’ll have, I have no idea how much adversity I’ll encounter. I have no control over others’ behaviors. I have no idea if my partner is going to be in a sweet mood, or foul — and likewise, all the people I work with. I don’t even know, from one day to the next, if I’ll have a job. Or if something awful will happen that takes me totally by surprise.

I can’t let that stop me from living my life. I also can’t let it stop me from being happy. I have so much I want to do with my life, so many goals and hopes and intentions — not so much for myself, rather making good use of the skills and abilities I’ve been given and developed. I’ve got a lot to do. I’m on a mission. And I can’t allow the shenanigans of the world to distract me from my purpose and detract from my quality of life.

I say that now, of course. A week ago, I was in a very different place. I’d gotten sidetracked, overwhelmed, fried by external circumstances… caught up in a perpetual, ever loudening (is that word?) feedback loop of stressors and stress. I was making myself sick — literally. And as far as I was concerned, it was everybody else’s fault.

Poor me.

Oh, poor me.

For some reason — divine providence? — I got distracted back into stoicism. I have no idea what I was googling or surfing in search of, but I happened upon some stoicism-related material… read it… read some more… thought about it… realized, Hey, this is what I myself think and believe, and actually, it’s much truer to my own guiding philosophy than all this stinkin’ thinkin’ that’s dragging me down.

So, it’s time for a stoic “reboot”.

I’ve been scouting around online, and fortunately the stoics are both classic and haven’t been hugely popular (read, economically viable for the publishing industry), so there’s a ton of material online I can download for free. Lately, stoicism has enjoyed a resurgence, and more people are writing and talking about it, but I prefer to read the original texts (translated into English, of course, though I think German translations could shed additional light), and give it all thought, myself. I find a lot of interpreters of original texts have their own perspectives (even agendas) which cloud the meaning for me. Plus, I find them less rigorous than is comfortable for me.

So, I’ve downloaded some texts by Seneca and Epicetus. I may dip into others, while I’m at it, but these are the two I’m focusing on, right now. And I’m spending time with them, reading, digesting, reading… interpreting… and doing some blogging about what I get from it, especially as it relates to how I manage my autistic issues and Aspergers life.

The blog will be an intermittent activity, since I’ve already got a lot going on. But I have a feeling it could grow into something over time. Time… that’s the first topic I wrote about. Speaking of which, it’s time to get to work. I’m at home today, since we’re having a snow storm(!) all day, and there’s not much point in braving the commute to the office.

I’d planned to go in today, thinking I’d get in a nice swim, this afternoon. But — as with so many of my other plans — it’s not going to happen.

‘Cause the rest of life happened, instead.

So it goes. Just have to make the best of it… which is a whole lot easier to do, within the comfort and quiet of my own home.

The Asperger’s / autism spectrum ~ the next evolutionary step?

Personally, I think the surge in autism (if there is one) can be a result of better pre-natal care, better nutrition, medical advances, and pregnant women taking better care of themselves (no drinking, no smoking, or just limited exposure). We’re the result of doing things right. And the folks who think we’re wrong just might be relics of a past age that they actually always wanted to get beyond.

the silent wave

The first time I heard this theory, it came from my partner, many years ago.  As usual, the threads of the same theory had been assembling in my head, too, but given my then-unknown tendency to separate thought from words/language, I could never quite express it.  When he proposed it, however, this instantly sparked the union of those thoughts and words.  I knew precisely what he meant.

Of course, neither of us made the connection to the Asperger’s/autism spectrum back then, but only because we didn’t know.  We had barely heard the term “Asperger’s”, and we knew the word “autism”, but for us, it conjured up the same imagery that it does for most people today, and back then, that certainly didn’t seem to hold any resemblance to a higher rung on the evolutionary ladder.  We seriously didn’t know.

What he had said, however, was that there had been certain…

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LISTEN: Black, female and autistic — hiding in plain sight – Sharing from Salon.com

If advocates for the autistic community are going to effectively place our cause within the larger spectrum of social justice movements, it is imperative for us to realize that — as with every other form of social discrimination — there are intersections between our hardships and those experienced by those who encounter racial, sexual, and other forms of bigotry.

This is why I reached out to Morénike Giwa-Onaiwu of the Autism Women’s Network, who chairs the Autism & Race Committee. After previously interviewing Giwa-Onaiwu for an article on the intersection between autism and feminism, I was struck by her observation that “I believe that my experiences as an autistic person has definitely been affected by my gender and race. Many characteristics that I possess that are clearly autistic were instead attributed to my race or gender. As a result, not only was I deprived of supports that would have been helpful, I was misunderstood and also, at times, mistreated.”

Please read and listen to this awesome piece: LISTEN: Black, female and autistic — hiding in plain sight – Salon.com

#Autistic logic has saved me so many times, it’s not even funny.

 

girl walking down forest path

I was eight years old, playing by myself in the field up the street from my house, when logic saved me from being possibly abducted and definitely sexually assaulted by a creepy white guy in a big car.

It was early afternoon on a Saturday, and I was climbing the high chain-link fence that divided the field from the next neighborhood over. In my typical Aspie girl way, I was talking to myself and entertaining myself greatly by hanging from the fence about 10 feet off the ground, and walking my way along its length, toes in the chain links, fingers wrapped around the rough metal in front of me.

I often played in that field alone. I preferred it that way. Occasionally, I ran into another kid, but that seldom went well. I said something they didn’t like, or I misunderstood what they said to me. Once, I was attacked by a black girl who was furious about my ancestors enslaving hers. It was the days of the Black Panthers, so of course she was furious. And rightly so. I tried to suss out the logic around my ancestors actually being persecuted in Europe for their religious views and having had nothing to do with slavery, but my rationale was unwelcome. That ended poorly. I didn’t get hurt too badly, but I was so frustrated that I couldn’t make my case clear, and I couldn’t convince her that I was her friend. I was being too much the pedantic Aspie. I probably sounded condescending and insulting, to be honest.

Yeah, I’m sure of it.

Another time, another girl let me hold her dog’s leash and told me I should wrap the leash around my hand, so the dog wouldn’t get loose. I misunderstood and deliberately didn’t wrap the leash around my hand, and the dog (he was big) got away from me. We spent quite some time trying to catch that damn’ dog. We did, but I never got to hang out with her again.

Being alone at the field was my refuge. It was the one place I could escape the constant sensory overload of my mother’s on other-end-of-the-spectrum hyposensitive, sensory-seeking ways. The noise. The banging. The chaos. The radio turned up loud. The singing at the top of her lungs. The constant movement, the constant contact — her bumping into me and everything, because she couldn’t feel where her body was in space.

The field and its empty expanse was my refuge.

So, there I was, climbing the fence, talking to myself enthusiastically, enjoying my vociferous solitude. And up drives this big car with a white man behind the wheel. I barely noticed him, and when he called out to me, I didn’t pay any attention to him. He was on the other side of the fence, sitting in his big-ass 1973-ish behemoth of a car, idling in the alley behind a neighborhood that was predominantly Black. The only white people who came into this area (other than a few families who lived on my street), were the workers who showed up at the businesses cate-corner from our house. There were a handful of warehouses and small companies on the other side of the intersection, and the only time I saw unfamiliar white people, was during business hours, Monday through Friday.

It was Saturday. What was this white man doing in his car in the alley behind a Black neighborhood?

Made no sense. Something was up.

He kept talking to me, acting like he knew me. Pffft. He didn’t know me. What the hell? Then he starts asking me if I want some candy.

“No,” I said. “I’m not hungry. And my mother told me not to eat candy between meals.”

Then he asks me if I’d ever seen “one of these”. He was holding something in his hands. I couldn’t see inside the car, so I moved along the fence, staying up high, and I saw his pants zipper was open and he was holding his dick in his hand.

“Yes,” I said dismissively. “I have a brother.”

He asked again if I wanted some candy and wanted to come down and talk to him.

“No,” I said in all honestly. I had no interest. He was boring. Plus, it was starting to seem creepy. Even at eight years old, I could tell something was up with this guy, and it wasn’t good.

I started to climb down from the fence. I wanted to go home.

“Where are you going?” he asked.

“Home,” I said. “It’s time for dinner.”

“But it’s the middle of the afternoon,” he protested.

“My mother is calling me,” I said, as I turned and started to run for home. As fast as I could. I had to get out of there. All the signs told me something was very, very wrong.

I ran across the field, as I heard him calling behind me. Then, for some reason, I stopped and turned. I had to get his license plate and report him.

I started to run back towards the car, in hopes of memorizing his license plate. But when he saw me running towards him, he gunned his engine and took off. And I stood there in the middle of the field feeling grossed out and disappointed that I hadn’t gotten his license plate. Damn!

I went home and never mentioned this. In fact, I forgot all about it until I was in college and I was thinking about kids being abducted.

If I hadn’t been a little Aspie girl, things might have ended up very differently. Logic saved me then.

And it continues to. I can’t even count the number of times that basic reasoning has averted disaster. This example is just one of so many.

For that, I am eternally grateful.

Living the ‘lie’

Excellent post!

the silent wave

I’ve written a lot before about acting and masking.  For the cheap seats, it’s a prevalent theme throughout the Asperger’s/autism spectrum community.

The way I see it, “masking” is the idea of putting on a proverbial mask, one that covers up your true personality, your true self, etc.  In essence, hiding who you truly are.  “Acting”, on the other hand, is related, but different; one either adopts the characteristics or even persona of another, or perhaps constructs a new persona altogether.

I’ve acted and masked all my life, from my second year of kindergarten onward (yep, you read that right; I spent two years in kindergarten.  Long story.  Not due to intellectual or cognitive impairment).  Acting and masking are survival traits of sorts for me.  I couldn’t have “functioned” in this world without them.  Masks and acting roles construct a hologram of me that is deemed acceptable by my peers.

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