Ten Things Autistic Kids Pick Up Faster, Better, and With Less Trauma If They Aren’t Bullied Into Learning Them

This is a fantastic post. I’m fortunate to have not yet read the article that gave rise to it, but each of the points is right on target.

Autistic Academic

[UPDATED to include links to other rebuttals of this piece.]

In a previous post, I said that when people who support the abuse, bullying, and belittlement of autistic people “praise me for my accomplishments … it feels like a slap in the face.  You’re proud and impressed because I got here in spite of obstacles you created and that you support?

Object lesson: a piece posted today at Autism Daily Newscast and penned by Karen Kabaki-Sisto, titled “10 Perks Kids With Autism Get From Bullying.”  I won’t link to ADN’s site, but I have saved the article in .pdf format, which you can access here.

As an autistic adult who is spending thousands on therapy per year to treat the PTSD caused by childhood bullying, I’d like to do two things.  The first one is to unleash a barrage of swear words not limited to the languages…

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I’m at War With Myself – Parts of My Autism People Can’t See

YES to so much of this. Seriously, there’s just no point to me disclosing any of this to people. If they know, they just treat me like I’m impaired and can’t fend for myself. If they don’t, they just expect me to go along with everything they do, to mirror their activities and interests… and like it. Augh! Please. Small wonder, I isolate. I just can’t deal with all the demands… and the lack of support.

Anonymously Autistic

Sometimes I feel as if I am constantly in a battle with myself. Fighting against irrational thoughts in my mind, and unpleasant sensations in my body.

Constant nagging in my mind – “You might have left the door unlocked.” When I know very well the door should be locked. “You forgot to water the dog.” Despite leaving them with a full bowl.

Social anxiety tells me I’m not good enough and I have to remind myself that I only feel that way when hanging around the wrong people or large groups.

It’s like my adrenal gland is extra jumpy. I feel the surge of chemicals flowing through my body, making my heart and mind race. It used to cause panic attacks, but now it happens so often that I’ve learned to recognize the feeling and breathe through it. The sensation is unpleasant and can also lead to sensory overload or…

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Alexithymia can really come in hand when you’re #autistic

street lights blurred by a rainy window
Sometimes it helps to not see everything clearly.

So, there’s a medical emergency in my family.

The CT scan “found something”, and additional tests and a biopsy are pending.

Some members of my family want to do the biopsy and further care at a local medical center, where another family member went through years (years!) of mismanaged care, and it cost her dearly. She’s not even 30 years old, yet, and she has no colon. It could have been avoided, I’m positive. Because the medical center where she went has a reputation for screwing up.

On the other hand, there’s a top-line medical facility that’s one of the best in the nation just 1.5 hours away by car. They have the equipment and the personnel and the expertise to handle this new emergency. They don’t have a reputation for screwing up.

It’s been a multi-day struggle to get people to see that it makes more sense to go to the better facility, even though it’s a little farther away, and it’s in a city (versus the countryside). But after days of calling back and forth, checking facts and figures, trying all sorts of different angles… success. The biopsy will be performed at the excellent hospital, not the sh*tty one.

And here’s where alexithymia comes in handy.  Because for days, I haven’t had a clue what I’m feeling. I’m not sure I’ve felt much of anything. There have been stretches where I’ve broken down and cried (of course), but for the most part, my judgment has not been clouded by a lot of emotional reaction.

Some would say, I’m stunted. That I’m “not in touch” with my feelings. They would call it unhealthy, pent-up, repressed.

I’ve got news for them — it’s only a matter of time, till it all comes clear to me. And it shall. But for now, I’m able to think clearly, reason through different criteria, make logical arguments, and keep a level head in the midst of some very challenging conditions.

And that’s not a bad thing.

It helps that I don’t realize how confused and terrified I am.

It helps that I’m “not in touch” with how angry I am with some of my family.

It helps that I haven’t yet processed my frustration and irritation and sense of helplessness from afar.

All this helps me keep my head clear and “work the problem” with logic and fact-finding, which is exactly what needs to happen, right now. Not a lot of folks in my family can do that. But I can.

Eventually, it will all catch up with me. I will probably feel the brunt of this, a few weeks or months after things have resolved (in one way or another). And then I will shutdown… or meltdown. But it will all come crashing in on me. There’s no doubt about that. That’s when I’ll deal with all of this.

Just not yet.

So, maybe people need to loosen up about what the “healthy” way to handle emotions is. Maybe people need to realize that alexithymia serves a purpose — a very valuable purpose — that actually serves the greater good. Some of us need to keep our heads on straight, while everything is falling apart.

After everything has settled out, and we have some distance, we can figure out what we’re feeling.

And we do.

I certainly will.

Just not yet.

Alexithymia? Let’s take another look at the facts AND the truth – Part 2

alexithymia score : 156 points

Herewith continues my discussion of Alexithymia. Part 1 is here.

Question 11: When I am upset I find it difficult to identify the feelings causing it.

Fact: I can identify feelings fairly well, especially in ways that make sense to others.

Truth: This has only been possible after years of practice. I usually just pick a “ballpark” emotion to describe how I’m feeling – and I usually cue off the behaviors of others, to find out whether what I’ve said makes sense to them or not. I’m extremely sensitive to others’ “energies”, and I can often tell if what I’ve said makes sense to them or not. And then I adjust my descriptions to what I can tell is “working” for them. I can tell on a subtle level, if I’m confusing people, and I can adjust my expressions to suit what they need – and that’s the goal: successfully completing the social interaction, rather than actually communicating what is going on with me.

In a way, this actually comes in handy. Because not knowing what I’m feeling at the moment allows me to function well under conditions that otherwise make people highly dysfunctional. I can wade into impossible situations and think clearly in a crisis, because I don’t even realize I’m in a crisis. In this way, alexithymia works for me. It’s a real benefit and a gift.

Question 12: Describing the feelings I have about other people is often difficult.

Fact: It’s not as difficult now, as it used to be. I can do this pretty well, now.

Truth: Well, sure… Because I have both learned how to identify my feelings (in the “ballpark”), and I’ve learned how to express myself in ways that others understand. I generally keep a friendly-neutral attitude towards others, so as to keep things light and not overburden the interactions with me seeming to be angry (that’s my thinking face) or aggressive (that’s my excited face) or having some other emotion that others completely mis-interpret.

I can describe my feelings about others at work pretty well — actually a lot easier than in my personal life. Because a lot of what I feel mirrors what others feel. Someone who’s a pain the ass to others in my group is probably a pain the ass to me, as well. Likewise, someone who’s great to work with. I cue a lot off what others say they feel, and I check in with myself to see if that’s true. I sometimes “try emotions on for size” when it comes to others, because it’s a heck of a lot easier than coming up with my own versions. And it sometimes turns out to be true, anyway. It’s a process. A long process of learning and discovery and refining. And it’s not a simple, straightforward thing with me. The fact that nobody — but nobody — knows this, shows me I’m doing a good job at blending in.

Question 13: I prefer doing physical activities with friends rather than discussing each others emotional experiences.

Fact: Yes, yes, yes!

Truth: This is an easy one, because it’s so true. I’d much rather co-produce events — concerts, community gatherings, etc — with my friends, than sit around processing emotions. A lot of my friends / acquaintances over the years have accused me of “running from my feelings” because I’d rather be active and doing something productive, than hanging out talking about my emotional experiences. Please. I’m just built differently. That’s all.

Question 14: I am not much of a daydreamer.

Fact: Oh, untrue. I’m a total daydreamer.

Truth: How else am I supposed to stay sane in this illogical, nonsensical world that’s constantly overwhelming me with a full range of idiocy and sensory barrage?!

Question 15: I don’t like people’s constant assumptions that I should understand or guess their needs… it’s as if they want me to read their minds!

Fact: Very true.

Truth: Seriously, people, would it kill you to just tell me what you need? I’m not a mind-reader! I’m more than happy to help and comply, if you simply tell me what you require. I can work it out. But if you play those little “what’s my favorite color” games with me, you’re gonna get a blank stare. Work with me! Help me to help you.

Question 16: I sometimes experience confusing sensations in my body.

Fact: Yep. That.

Truth: Oh . my . god. Truer words have seldom been spoken. In fact, I think it’s safe to say, I often experience confusing sensations in my body. How could I not? I’m so “tuned in” to the world around me, like a radio dial set to EVERYTHING, that the internal sensations I have are not the only thing I’m feeling. There’s Everything Else, clamoring over each other like puppies in a basket, trying to get the most attention. LOOK AT ME! LOOK AT ME! I MATTER! PAY ATTENTION TO ME! That’s what all my sensations would be saying, if they could talk.

In the process of reacting to the outside world — light sensitivity, noise sensitivity, tactile defensiveness, smells, tastes, and all the associations that come up with each one… it’s a vibrantly rich sensory ecosystem I’ve got inside me. And yes, that leads to confusion. Especially when I’m under pressure and the stress is increasing my sensitivities. That’s the most confusing of all.

Question 17: For me sex is more a functional activity than it is an emotional one.

Fact: Yes. It is.

Truth: That’s not to say, it’s not fun. I’ve had some pretty amazing sex, and emotion has played a big part in it. But as I’ve always felt like sex was really for functional purposes — even the emotional aspect seems functional to me. You grow closer when you have sex. You want to be closer to someone, so therefore you have sex. Even emotionally, is serves a purpose. As I’ve gotten older, I’ve gotten a whole lot less interested in sex, I have to admit. It’s a relief, to not feel so compelled to exchange bodily fluids, but simply interact with other people as a person. The purposes that sex serves, I can fulfill in other ways, so meh – sexy… whatever.

Question 18: Some people have told me I am cold or unresponsive to their needs.

Fact: Yep. That’s happened. A lot.

Truth: My partners have always bitched and moaned to me that I’m not as warm and caring as they want me to be. I’ve only had a handful of intimate partners (my current one has been with me for over 25 years), but they all have complained that I wasn’t warm-and-fuzzy enough. Sheesh.

Question 19: I don’t dream frequently, and when I do the dreams usually seem rather boring.

Fact: Oh, untrue. I dream pretty frequently, and the dreams are anything but boring.

Truth: My dreams are usually logistical nightmares — scenes of trying to find my way through a massive medical facility, university campus, or office complex… driving down long, twisting roads through a remote countryside. I’m generally trying to figure out how to get from Point A to Point B, and I have no idea how to do it… but I persevere, and I eventually get where I’m going, even though I have No Idea how I did it. I’m just relying on intuition and instinct in my dreams, and even though I generally achieve my ultimate goal, it’s confusing as hell and incredibly stressful. It’s a relief to wake up, actually.

Question 20: Friends have indicated, in one way or another, that I’m more in my head than in my heart.

Fact: Yes. They have.

Truth: What’s with this “in the heart” business, anyway? That makes no sense. Who would want to make all their decisions based on emotion? That’s not how my world works. At all. Getting from step 1 to step 2 to step 3 is an intellectual process. How can you do anything if you don’t understand the component parts and the steps to getting there? Why would you want to do anything else? People who are “in their heart” more than their head tend to make the kinds of decisions that have landed us in the awful situation we’re in today — prejudice and high emotion running the show. How’s that workin’ out for you, humanity? Not so great, huh… People who base their decisions on anything but fact and logic and what we clearly know about cause-and-effect, should be banned from government, as far as I’m concerned. Then again, the folks in power would probably still find a way to screw everything up, so maybe banning is a bad idea. But there should be a test… at the minimum… for not being batshit impulsive and prone to emotional decision-making.

That’s just what I think.

More to come about the rest of the alexithymia discussion, in a day or two…

Alexithymia? Let’s take another look at the facts AND the truth – Part 1

alexithymia score : 156 pointsThis is going to be a several-part series, because there’s so much to say about this topic. And I don’t have a lot of time, right now, to do it all justice.

There’s an online alexithymia test I’ve taken before. And I’ve taken it again, just for a refresher.

One of the things that gets me about these tests is that they talk about things being easy or difficult, about being able to do them or not, as a sign that you do/do not have an issue.

The problem with that is, as an autistic grown-up with 50+ years of practice at figuring this stuff out and learning what works, what doesn’t, and how to adjust, I’ve developed a ton of compensations that cover up the underlying issues. Yes, I can do them. Yes, some of them I can actually do with fluidity. But is any of it easy? Oh, hell, no. It’s still difficult. It still leaves me feeling stupid and deficient. But I can do it, so supposedly I have no problems.

Except… I do.

So, when I fill out these questionnaires, and I answer about my ability level (rather than my innate inclination), I don’t even show up on the radar. And it doesn’t reflect what I’m really experiencing. I now answer with both the facts and the truth  – like so:

Question 1: When asked which emotion I’m feeling, I frequently don’t know the answer.

Fact: When asked, I can give an answer that sounds credible.

Truth: When asked, I often truly do not know which emotion I’m feeling. I come up with something that seems plausible, and I go with that. I’ve trained myself to respond in a convincing manner that sounds good. Whether or not that’s really what I’m feeling, is beside the point. It’s really about the delivery (the projected “sense” of my response), not the actual content of what I’m saying. The rest of the world doesn’t seem to much care about what I’m truly saying and mean, rather how I’m saying it. What I want more than anything, is for the conversation to move along, without drawing attention to how oblivious and out-of-sorts I am. If I draw attention to my emotional blindness, it makes the interaction So Much More Difficult. And I don’t want that.

Question 2: I’m unsure of which words to use when describing my feelings.

Fact: I can come up with plausible descriptions of what I’m feeling, on a regular basis.

Truth: I really am at a loss, when it comes to describing emotions. Over the years, through trial-and-error, I’ve figured out how to describe what I’m feeling to others. But it’s more for their benefit, than mine. It’s really to move the conversation along (as I mentioned above), or to avert a freak-out by the other person who can’t imagine why I’m so “disconnected” from my feelings. Oh . My . God . women are the worst to be around, when I’m uber-alexitymic — they treat me like I’m emotionally stunted… all those psychtherapist friends of mine, over the years, convinced that I was a heavy-duty trauma survivor, because I was so “disconnected” from my feelings. Ugh. The ways they interacted with me… how incredibly annoying. It’s so much easier to just fake my way through it, and leave it at that, without delving deeper.

Question 3: I prefer to find out the emotional intricacies of my problems rather than just describe them in terms of practical facts.

Fact: Oh, God, no. No, thank you!

Truth: Thankfully, I can tell the truth about this one. It’s very simple. I do NOT want to sort out the emotional intricacies of my problems. I just want to fix sh*t that’s broken. Full stop. Thank you very much.

Question 4: When other people are hurt or upset, I have difficulty imagining what they are feeling.

Fact: I can often figure out what the deal is with them… if I put some energy into it.

Truth: This is a learned skill. But it’s not easy, I’m telling you. When I’m tired and out of sorts, it gets harder. When I’m rested and I am dealing with someone I know, I can recognize their emotional patterns, based on a whole lot of prior experience (science!). But if it’s a stranger, or someone I haven’t figured out, yet… yeah, good luck with that.

Question 5: People tell me to describe my feelings more, as if I haven’t elaborated enough.

Fact: I used to have problems with this, now I don’t so much.

Truth: This happens less now than it used to, for a numberof reasons.

First, I’ve learned how to describe my feelings in terms that others understand, but which don’t really reflect how I really feel. I don’t want to dwell on gray areas, so I come out with a definitive statement, to avoid having to elaborate. God, I hate it when people ask me to go into more detail about my feelings.

Second, I don’t spend a lot of time around people in situations that call for a lot of emotional processing. Most of my social interactions are at work, where it’s all about getting the job done, not emoting, not sharing (cringe). I eschew scenarios where I’ll be sitting around with people processing their emotional ups and downs — and where they’ll expect me to process mine with them. I have no interest in doing so. Even with my partner of 26 years. She’s learned, by now, to not keep asking me about my emotional state. And I’ve learned how to give her the kind of information she’s looking for.

The last reason I have less trouble with this, is that I’ve gotten more familiar with the vocabulary of emotions. So, I can figure out more easily what I’m feeling. Still, it does not come easy. Not in the least.

Question 6: Sex as a recreational activity seems kind of pointless.

Fact: Sort of. I mean, I kind of get it. I’ve had some great sex in my life, I have to say. But doing it for fun? For recreation? It doesn’t seem like a good use of time.

Truth: I’m hot/cold when it comes to sex. I will be either celibate and asexual, or sexually intense. I’ve gotten myself into trouble a bunch of times with women who got really turned on when I was hyper-sexual, and they wanted more than was possible (since I was married, and I have rules about not fooling around). Even though I understand the draw of hot sex, still, treating it as recreation just doesn’t seem like a good use of time. Not when there’s so much to do in the world. We’ve got too many problems that need solving, to spend a ton of time exchanging bodily fluids.

Question 7: I can describe my emotions with ease.

Fact: Sure.

Truth: This hasn’t come easily. I can do it, but it’s not easy. Just because I can do something really well, doesn’t mean it’s second-nature to me. Plus, when I describe my emotions, I’m just barely scratching the surface. I’m nowhere near the full and detailed description of what’s going on with me — especially because there are no words for much of what I sense.

Question 8: You cannot functionally live your life without being aware of your deepest emotions.

Fact: Given the logical facts of how unexpressed and unresolved emotions mess with people’s heads and make life miserable for everyone, it’s simply common sense to me that you cannot be fully functional unless you have a working awareness of your deepest emotions.

Truth: I’m not sure I could ever be fully aware of my deepest emotions. They run through me like a lava field far beneath the surface of my bedrock life. They seethe and boil and rise and fall and far exceed any capability of language, indeed, awareness. They’re too fluid, too variable, and they can come and go at a moment’s notice, so no sooner do I become aware of them, than they disappear from view, replaced by something completely different. You can totally live your life without being fully aware of your deepest emotions – especially when those emotions are as intense and as mutable as mine.

Question 9: People sometimes get upset with me, and I can’t imagine why.

Fact: Not so much anymore.

Truth: Because I avoid people. That solves a ton of problems. ’nuff said.

Question 10: People tell me I don’t listen to their feelings properly, when in fact I’m doing my utmost to understand what they’re saying!

Fact: People don’t tell me that much.

Truth: Because I don’t spend much time with people, outside of my day job.  I used to get this all the time from my partner, and at one point, she was going to leave me, because she felt I was so emotionally distant. She didn’t feel cared for, which wasn’t true at all. I loved her with all my heart, but she didn’t “get” that from my behavior.

When she threatened to leave me, I started to work harder at listening and parsing out the data she was communicating. It’s been successful — partly because I’ve gotten better at the whole thing (I needed to be told I wasn’t doing it very well), partly because I now know what she wants to hear, and when I’m at a loss and don’t understand her at all, I can at least tell her something that will make her feel better. Mission accomplished. 🙂

More to come… Watch this space.

Please read this Creative Writing Of A Baltimorean

I’ll end up like you

lost among the years

drowned in a pool of tears

and gagged by silent fears

How such accomplishments

could go overlooked

is a testament to the density of human will

to hide the healing truth

to bury the real fountain of youth

men desperate enough to kill

If you expect me to be stopped

by a glass ceiling

you’re expecting us

to have the strength of a fly

and while we may die

you’re going to hear what we have to say

because our works lay the path

for millions to follow

… continued at the website

 

Please read the rest at Aspergians, They Can’t Know What You Don’t Say…Or Write — Creative Writing Of A Baltimorean

What I told my new doctor

doctor talk to a robot
I’m on the left, trying to explain myself…

I had a pretty good appointment with my doctor yesterday. She was actually quite personable, and she really seemed intent on making sure I feel seen, heard, and cared about. I had a couple of instances where I started to get a bit shaky, when talking about all the responsibilities I’ve got on my plate. I hate when that happens. I worry that it makes me look emotionally unstable (cue the meds?) or weak, but it happens. So, I might as well accept it and just deal with it. I did manage to recover pretty well, and finished out the appointment in good shape.

I had originally written up a one-page sheet detailing my primary concerns, but it occurred to me that I was being too detailed, and if she didn’t see something with her own eyes, telling her all about it wasn’t going to work in my favor. I don’t want to be perceived as an attention-seeker or someone who makes up stuff to track, just because. I’ve been there before. I’d prefer not to go back… it’s no fun, dealing with doctors who think you’re just another Munchausener.

I mean, what am I supposed to do, when I’m hypersensitive to things that don’t show up on regular measurements, and can’t be described, because words fail me? It’s happened so much… and it’s so frustrating, to not be able to articulate what the deal is, as well as having to navigate the social interactions where I’m pretty sure (but not certain) that the person in the white coat sitting across from me is skeptically indulging me for psychiatric diagnostic purposes. Ugh.

Well, that didn’t happen. At least, I don’t think it did. How I wish I could just read people. It would simplify things like this considerably. But no… and anxiety commences. My anxiety level, however, did not fly through the roof, as usual. I took care of myself before, during, and after. I made sure I listened to relaxing music as I drove in, and I got there early, so I sat in my warm car and chilled out.

When I was in the waiting for the doctor, I listened to more relaxing, rhythmic music, and I actively relaxed. When they took my blood pressure, it was 96/60, which is about right for me. I tend to have fairly low blood pressure, and usually when I go to the doctor it jumps up to 130/85 or so… not this time, though. So, I know I was doing something right.

And when  I met with the doctor, I had my notepad and my questions and I took notes while she was talking. She didn’t seem to mind, like other doctors have. Other doctors (even the one I really liked) used to give me crap for taking notes and asking them to repeat things. Their whole attitude seemed to be, “Why do you need to take notes? This is simple. You’re smart. Stop pretending you need help.”

The thing I liked, is that she didn’t rush me. She didn’t get an attitude when I took my notes. She just took as much time as I needed, and she didn’t leave until she made sure that I didn’t have any remaining questions. I did have a couple of things I remembered (that I hadn’t written down).

All in all, it was productive.

And I feel a lot better than I did, just 48 hours ago. (And thanks to everyone who supported me yesterday – I really appreciate it!)

So, that’s that. I can take all that concern off my plate – just in time to make room for other concerns. There seems to be no lack of them, these days.

But I suppose that’s the price of being alive – which I’ll happily pay.