Acting more autistic

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I've picked up rocking more recently but I've always done it at points in my life and do it unconsciously while talking with people for about 5 seconds in a subtle way. Yeah, I have to say I have always held things back but still enjoy rocking or pacing and stimming, but in private.

Oh yes, me too. A couple of days ago I caught myself rocking while listening to some music and stopped - and then just thought "well why the hell not?" - and carried on rocking. Hah! It felt great.

Recently I've realised just how much of the way I behave is simply playing back a tape of how I'm "supposed" to behave - and I've had enough of it.
I'm going to play my own music now.

I find this attitude is common with all kinds of disabilities and differences. If someone has a mobility disability, they will limp in a more pronounced way when they are tired, because they don't have the energy which is required to walk more 'normally' - and people often think they are faking it because they've seen them walk with less of a limp. Same with the attitude people have to someone who gets out of their wheelchair to walk around - the assumption is that if they can walk, then they shouldn't have a wheelchair! People assume that if you can do something sometimes, you should always be able to do it, and any deviation from your usual attempts to be 'normal' means you are being lazy or faking. Of course, Aspergers is very different from mobility difficulties, but it's the same sort of pattern that doing something in the 'normal' way takes a lot more energy than it does for 'normal' people, so tiredness has a huge effect that people don't understand.

I came to that realization several months ago, Cornflake. I'm glad I did.

capriwim, that's interesting. My mother has a physical disability that gets better and worse. So I've seen her walk unaided and I've also seen her walk with a cane. I don't think this idea would have occurred to me, though. Specifically re: wheelchairs, I think most people don't realize how fuzzy the line is between can walk and can't walk. If you think of a wheelchair, you probably think of a paraplegic, who definitely couldn't walk or stand... but that's not the only kind of person who uses one. But you don't think of that. I guess people kind of think of people who are capable of walking any distance at all vs. people who definitely aren't, and imagine that none of the former use wheelchairs, no matter how difficult it is for them.

I don't think this is precisely that, though. Like, before I was about nine or ten, I not only didn't rock, I didn't have any desire to rock. The stims I need/want to do (let's not open the can of worms that would be a debate over whether it's a need or a want) change. And because the stereotypes are a random group of traits some of us have, and because how stereotypical the behaviors are bears no relation to which ones I do, when my stims change, sometimes they become more stereotypical and sometimes they become less stereotypical. I mean, in my life, my stims have changed such that (in no particular order, and not a complete list)--

I've stopped spinning.
I've stopped picking at my lower lip.
I've started picking at my lower lip.
I've stopped shredding my fingernails, and having freed up my hands, I now spend 90% of my time creating hangnails to rub against my palms and fingers, rather than just a little time spent on that and most of it taking chunks out of my nails (which look much nicer now, in case you're wondering).
I've started rocking.
And since starting rocking, I've come to rock very often, rather than just occasionally.
I've learned that when I can't really rock (like when I'm on the computer) I can sit in a spinning chair and turn around a little bit (though not far since my lower body is moving while my upper body isn't).
I've started spinning a little bit on rare occasions.
I've started snapping my fingers.
I've stopped bending paperback books while I read.
I've started doing less-destructive stuff to the pages of books while I read.

So I don't think it's just about getting tired and stimming more obviously. The differences are as much qualitative as quantitative.

Oh yes. I'd say over 95% of my "communication" after I learned to speak (including my writing until I learned otherwise) was just the solving of a puzzle called "what does a person say in response to what events/words?" Combined with abysmal receptive language I was basically barely able to functionally and usefully communicate about my own needs, thoughts, feelings, or experiences. When I did, it was so woven in with the garbage that it would be impossible for another person to know. Any true communication I had wasn't in words.

For a long time I knew something was very wrong. But not what. And when I did find out what, the problem wasn't magically solved like in a made for TV movie. I had to learn the meaning of a lot of communication. And applying that communication was a wrestling match with the internal mechanism that churned out words. You can't have your brain trained to do something for 15-odd years without it becoming very ingrained in your life. I ended up learning to use the same phrases that mechanism used, but to describe my experiences instead of a hypothetical person. But that's not magic, it's hard work, practice, and learning a lot more language comprehension than I had before.

And that all reminds me of what you said. Because now my language mechanisms more or less listen to me now. Unless I'm tired they don't just run off on their own. But that difference between mine and a bad copy is the e between communicating and not communicating. I wish more people in the world understood that kind of difference between real and false means everything to us, and isn't just cosmetic or something.

For me I've had a lot of short term memory loss and just felt not as smart. Sometimes I feel that I have no thoughts at all. Then again that could be epilepsy related? No one else seems to be having these problems. I find it difficult to walk after a seizure. And exercising is cut short by them too.

I haven't read everything here because it seems quite long, but can medication affect this? Ever since I have started talking antipsychotic medications, I have noticed I have become a lot more restless and now I rock, I have hand-flapping like gestures when talking and I pace more than I used to. I try not to do such things, but I get antsy and can't help it.

For me it was Ritalin. I never had these problems before going on it. I think I'm done with medication. Everything I've taken I'd had permanent side effects from.

Regarding wheelchairs I find the common stereotype interesting. I live in senior/disabled housing. Everyone except the double amputees, who uses a wheelchair, can walk a little. Ranging from a few steps to quite a bit on a good day. At this point for mr walking is not sufficient to get me around the house entirely or safely, although I can do a little (especially in quiet and alone with few distractions). I use a powerchair and honestly it's exhausting even to use that for transportation outside. People don't realize it can be as tiring as driving a car under nonoptimal road conditions (you have to keep from tipping sideways usually). Also due to autism, because the blast-in-the-face sensation of all this new sensory data. 

When I first got a wheelchair nearly ten years ago I could and did walk a lot more than now. The chair was manual and foot-propelled. Foot propulsion is hard work because it involves the reverse of the muscles used for walking. No lazy person would ever do it. Using a manual wheelchair under your own steam is nearly always harder than walking unless you have a condition that makes walking hard. It uses body parts not intended for walking. Over time it wears out your tendons. I know someone who had tendon after tendon snap until she was bedbound before she could get a powerchair. In my case the change happened because of the extremely sudden onset of a condition related to something going wrong in the muscle energy cycle. (So many things can go wrong they don't know where). I went from reasonably able to walk to flat on my back in a week, and had to slowly regain the ability to move around by a lot of resting and possibly a dietary supplement. 

Anyway by far most chair users I know are not people with conditions that give them a fixed and relatively normal level of energy and skill. They may be the most stereotypical but I doubt they're the most common. 

What you may not know is that even for paras, there was a time when all rehab efforts focused on form over function too. They were put in braces and crutches and made to walk an agonizing few tiny steps rather than use a wheelchair. The appearance of walking was more important than actual mobility. So if they could move a few inches or feet that was considered the goal.  A lot of that changed due to disability rights activism. Rehab is still very medicalized but at least it's more often about wheelchairs than about appearances. 

Deaf and blind people had and still sometimes have the same set of battles.

There was a time when it was nearly impossible to find a deaf school that allowed sign language. They all focused on lipreading and speech.  Lipreading has only limited accuracy even for the best and most are not the best. People deaf before the onset of language are highly unlikely to ever produce intelligible speech. But students were punished, often corporally, for signing. ASL only survived because students from deaf families secretly taught it to other students. Many students though grew up with no language at all which had a profound effect on their lives as you can imagine. 

ASL was only even considered a language towards the second half of the twentieth century. It took a real fight to get it allowed in deaf schools. Some schools though still only teach speech and lipreading regardless of students' ability. (The better schools teach all three and don't persist where one of them is hopeless.  But some schools disguise themselves as such schools by the language they use while focusing entirely on oral communication.)

Blind people had to fight to be able to use Braille and white canes. Many parents felt these things made their blind children look abnormal. They preferred looking normal to being able to read or travel independently. There have been a lot of fights between organizations "for the blind" and organizations "of the blind" over this and similar issues. 

Also, both deaf and blind people have a tendency to stim. Including rocking, making repetitive noises, eye-pressing, and many other mannerisms. It's still considered a good idea for "social reasons" to train them out of it even when it serves a purpose (such as providing feedback about the body that they can't get visually.) 

And also there's many physically disabled people who can move around independently but are discouraged from doing so outside of a wheelchair because it looks weird. They may crawl around on the floor, one woman I know born without legs got around by rolling in constant somersaults (quite quickly and accurately), all kinds of things nondisabled people would rarely think of. But people think it looks weird so we can't have that can we. 

Then there's of course people born without certain limbs. Especially from thalidomide but other things too. Many of them have a body map that corresponds to their bodies exactly, including no body map for the arms or legs they're missing. Yet people are constantly trying to put prosthetic limbs on them even when they'd do better, say (for legless people) in a wheelchair or (for armless people) learning to use their feet for everything. Mind you prosthetics work best on amputees whose internal body map has the limb in question still there. So there have been a lot of fights between professionals or parents putting these prosthetics on the kids and the kids finding every possible way to take them off and go on with their lives with the body that feels natural to them. 

Just about every kind of disabled person has had to fight for their ability to do things the way that's most functional rather than the way that looks the most normal. There's also usually a progression that looks like this:  Disabled people's lives are controlled by professionals only. Then (if a childhood condition and even sometimes if not) parents and caregivers assert their right to make decisions for their children, which is actually very important -- in childhood. But then disabled people ourselves find that our interests might be different than either their parents or the professionals and start asserting our right to determine our own path even when it clashes with professionals or parents. 

The problem being that professionals, family members, and disabled people ourselves (leaving out the people who are several of those things at once for simplicity's sake) usually have different values and priorities. This is broadly speaking and exceptions abound. But a lot more made sense when someone pointed this out to me. Sure, everyone ideally says and believes they have the best interests of disabled people at heart. But each generally has different ideas of what those best interests are. And there are dynamics of power involved as well that can change people's judgements, as well as different experiences of the world. All of these things can affect perspectives on what disability is and how it's best dealt with. 

So that's my very long way of saying that nothing autistic people deal with is new or unique among disabled people. Not even that many autistic people see the traits that get them labeled autistic as intrinsic and valuable to them (at least some of those traits). That's an especially common attitude in people who are born that way or become that way early in life. Late-disabled people can feel the same but it's most common in people disabled from birth or very early. Many disabled people feel that our bodies are simply part of normal human diversity and that we do best working with our bodies but not against them. Whether we are autistic or anything else. One of the best speeches I ever heard on the matter was by a woman named Mary Duffy with no arms who got up naked in front of the camera and explained about her lifelong fight against professionals who thought they knew best and tried to teach her to be ashamed and hide her differences instead of just be who she was, no arms and all.

Here's a quote from my blog post quoting her (my writing is in brackets, the rest is hers):

"You have words to describe me that I find frightening. Everytime I hear them they are whispered or screamed silently wordlessly from the front to middle-page spreads of newspapers. Only you dare to speak them out loud. I look for them in my dictionary and I only find some. The words you use to describe me are "congenital malformation." In my child’s dictionary I learn that the first part means "born with". How many times have I answered that question? "Were you born like that? Or did your mother take them dreadful tablets?" How come I always felt ashamed when answering those big staring eyes and gaping mouths? "Did you have an accident? Or did your mother take them dreadful tablets?" With those big words those doctors used, they didn’t have any that fitted me properly. I felt even in the face of such opposition that my body was the way it was supposed to be, that it was right for me, as well as being whole, complete, and functional.

[In an interview, she describes her experiences with the medical profession as a child:]

"…I felt I’d been objectified by the medical profession in general, and I wasn’t able to talk back. And particularly about how they made decisions and comments about my future as if I wasn’t there. And speaking to a dictaphone and describing my future as if I was incapable of comprehending.

[...] Today I’m winning battles every day against my own monster, my inner critic, who has internalized all my childhood oppressions. The oppression of constantly trying to be fixed, to be changed, to be made more whole, less visible, to hide and to be hidden."

That blog post can be found here, this whole sentence is a link. It's relevant to my topic in some other ways. 

(Aside:  I am experiencing an amazing catsnuggle right now with her cheek pressed against my face.)

Here's a couple other articles that deal with some of these issues. I'll provide a link then a short quote in case you can't read the whole thing right now:

Playing Cards at Boston Children's Hospital (link)

Quote:

"Physical therapy at Children's was different than at the Center. The physical therapists all seemed very young and the PT room had much less equipment. We did stretching, but no real-world stuff. Once Matty watched me walk and said, "You don't concentrate. You just go--like you think you walk normally or something."

I tried to explain it to my mother: "They exalt form over substance." I didn't have the right words. My mother reminded me of how many stories we had heard of people who had been helped by Children's. She did concede, though, that it was odd that Children's didn't offer either speech or occupational therapy."

Another link:

The Stairs Don't Go Anywhere (link)

Quote:

"Norman: First, I'd like to say that it's fitting that we are talking about rehabilitation issues on none other than Independence Day! To answer your question, I remember thinking that the physical therapy room was a very weird place.

Michael: Why do you say that?

Norman: They had all this strange equipment and weights and mirrors and bars. But the weirdest part of the physical therapy room was the staircase. There was this staircase with a handrail on either side but the stairs didn't go anywhere -- they went right into the wall! The physical therapist would come up to me and say, "Walk up the stairs." 

And I'd say, "Why? They don't go anywhere." 

But she'd say, "Never mind, walk up the stairs." So, I'd walk up the stairs and nearly kill myself getting up there. When I got to the top the physical therapist would say, "Good! Now walk back down the stairs." 

I'd say, "Wait a minute! If you didn't want me up here in the first place, why did you ask me to walk up here?"

Michael: Did she give you a reason?

Norman: She would say, "You want to walk better, don't you?" 
I didn't know any better, so I said, "Yeah." And what I learned at that moment in life was that it was not a good thing to be disabled and that the more I could reduce or minimize my disability the better off I would be. When I was in segregated school, I fundamentally saw myself as deficient and abnormal. I saw myself as inherently different from the rest of the human race. The implicit message that permeated all my therapy experiences was that if I wanted to live as a valued person, wanted a quality life, to have a good job, everything could be mine. All I had to do was overcome my disability No one comes up and says, "Look, in order to live a good life you have to be normal," but it's a powerful, implicit message. Receiving physical and occupational therapy were important contributors in terms of seeing myself as abnormal. Every part of my life, from the minute I was born, told me that I was abnormal, whether it was getting physical therapy, going to Easter Seal Camp, or wearing leg braces at night."

Final link:

Disability Shame Speaks (link). Note this article has several parts so you have to click through to the end. Also note it's from the perspective of disability-related shame as if it were a monster that was describing how it plots to harm us. It also always makes me very emotional so be warned. I bet lots of people here can relate to it too. 

Quote:

"Children are particularly vulnerable to my traps. Eventually they learn that they are different, no matter how many people tell them they are just like everyone else. That is when the fun begins, and I work on teaching them that their bodies are not truly important. In the beginning, they don't believe me. They run and jump if they can; rock, roll, and crawl if they can't. Their bodies seem as they really are: Joyously alive, and they move for no one but themselves. They know no other way. But I have my ways of stopping this. I just wait for them to grow up.

There's always exercise, and the lack of it. A failsafe solution. Just polarize attitudes toward exercise to tell people they either get better or they are complacent. Just force them to do little so that they avoid judgment. Then they are judged for doing little, or people think of their bodies as an afterthought. The children learn to define notwhat they want, but what others want and finally what they want is to be left alone about what others think they can do. They've been obedient, objectified children long enough.

They watch other children do more than they can, and feel as if they have failed. They watch other children do less and they become tormentors or guilty friends. They cry for freedom but find the sound gets stuck in their throats, leaving them gasping. And so they become adults whose experience with movement has been so medicalized it feels like a deep and abiding punishment. Go to therapy? Only when forced.

Exercise? Only after the deep sobs subside.

Year after year they try to make peace with their bodies, mostly by forcing themselves back into some exercise program, hoping that this time they will see their own beauty. A noble goal. But they usually end up atoning for stillness, seeing themselves the same way they have been seen for so many years. As defective people. People who do not possess the will to improve, no matter how much their bodies try to tell them they are really disabled. No matter how much non-disabled people's experience of movement remains magically and joyously unmedicalized. (For nondisabled people, it's never about what the therapists call "functional gains.")"

Okay I've made this long enough already so I'm going to post it. 

This is excellent. Thank you.

I want to say more but it will probably take me hours to fully digest this.

Yes. Antipsychotics work in part by messing with neurotransmitters involved in movement. I have never moved the same since going on them as I already had a parkinsonlike movement disorder and antipsychotics can cause parkinsonlike symptoms. It was a drastic sudden reduction in certain movement skills I never regained.

If they cause restlessness that sounds like Akathisia. You might want to read up on it. Other movement problems they can cause include dystonia, dyskinesia, cogwheel rigidity, pseudoparkinsonism, and I think others I've forgotten. These can be acute or tardive. Tardive means it occurs cumulatively over time. Acute means immediate. The tardive kinds can be permanent. I have mild tardive dyskinesia (which often accompanies cognitive issues that have just been seriously researched in the past ten years). It doesn't feel so mild sometimes when I get tired and begin writhing all over but usually it's just subtle tongue movements. A good doctor will check you for that periodically while you are on them. Also tardive dyskinesia can weirdly be masked by the drug itself such that you don't get the full extent until you go off it.

pensieve: I think I am like you. I have had serious side effects on nearly every psych drug I was ever on. And many of them were lasting afterwards. I'm somehow able to tolerate a tiny dose of amitriptyline for a sleep disorder. And my epilepsy meds are sometimes used as psych meds. But everything I took for psych stuff at psych drug doses did terrible things to me.

Including paradoxic effects like hallucinations from antipsychotics. Several antipsychotics (including one extremely mild one taken at a tiny dose for nausea) nearly killed me. I got every motor side effect too except those in neuroleptic malignant syndrome. My seizures got far worse. I got intestinal blockages from severe constipation and had to have them dug out manually. My usual distance from the world widened until it felt like the "glass" between me and the world was foggy and ten times thicker. Massive cognitive issues. Couldn't stand up from lying down. In some cases slept twenty hours a day. And some of this on extremely small doses. And my mind... felt like someone shattered my mind and emotions and left them distant from each other. Sometimes I'd sit down and a moment later the sun would be down and drool all over my body. I had more meltdowns because like... normally when an ability isn't there I can feel its absence. But on antipsychotics, I couldn't feel that I couldn't do things. So I would try to reach a paper and pick it up. Not only wouldn't it happen but I wouldn't be able to stop trying and then all of a sudden I'd start screaming because I didn't understand. And some of them made my throat close up and my tongue swell, so I also had anaphylactic reactions to several. (Mind you I'm abnormally sensitive to these.) It simultaneously suppressed my automatic stimming and gave me Akathisia so I'd stim in other ways anyway. And getting off them caused months of withdrawal. And they gave me cardiac symptoms too. I'm not cut out for those at all.

My reactions to other kinds of psych meds weren't as severe or pervasive but still caused major problems. I suspect my brain is already tilted in the direction of what antipsychotics do and so they affect me worse than any other kind of drug ever.

Wow, great post.

The only thing is I have to disagree with the last quote. Exercise for nondisabled people is NOT "magically and joyously unmedicalized." Our culture, here in modern-day America (the only place I have personal experience with and can talk about), turns exercise and moving your body into a torture you're "supposed" to do because failure to do so, though understandable, is a moral failing. Exercise is very much transformed into something awful. Disabled people aren't the only ones with stairs that go nowhere. Just take a look inside a gym sometime. Exercise is just about your weight, or about how many repetitions you can do of some pointless task. It's a humiliating experience. It's exhausting and boring. Our culture does this to EVERYONE. That it's awful doesn't make it rare. Maybe what's described is even worse, I wouldn't know, but it seems to me exactly like P.E. And that early training continues in everyone.

But...

Awwwwwwww! This just made my day. It's so amazingly sweet.

It's likely you read about or were thinking of hand flapping and just developed it because it helps you. People on the Parenting forum recently said their children didn't need a routine until they implemented one and THEN they needed one and it ends up helping them with it even if it appears more autistic to freak out over a broken routine.

I agree it can be that way. But there is a difference they're trying to get at. People born physically disabled (and severely impaired) often have trauma more reminiscent of severe repeated childhood sexual abuse because they are forced into exercise programs from infancy onward including being touched in ways few nondisabled people are ever touched in the course of an exercise program, and not allowed out of the situation. They literally have never known a time when their bodies weren't violated in this way, and the pressure likewise begins way younger on average. It's a matter of a combination of degree and type. And also the exercise or you're evil and lazy craze is more recent so these authors are probably writing from childhoods where that pressure was less intense on nondisabled people (less intense and less pervasive -- confined to situations like high school gym). It was less intense when I was growing up and I'm younger than them.

Hmm. That's an idea... it sounds quite plausible, but I don't feel like that's what it is. I mean, it doesn't feel like something I was thinking of or wanting to do... more like it starts in my body. And it feels like it serves a similar purpose to jiggling a leg. And lately I often want to type faster than I'm capable of and my fingers end up getting tripped up from trying to type so quickly. But then, I'm tired, so that's probably also making my hands less dextrous... But I've known about it for ages, so it's possible I did have that in there as a template.

Haven't done it today. Almost did. I can't really say whether it helps me. I haven't let myself do it long enough to know how it feels.

The cognitive effects of the "burnout" I've had is mostly short term memory impairment. It's to the point that I can't really books anymore, and I generally feel pretty out-of-it. Of the half-dozen or so people I've seen talk about it, the memory problems seems to be a common element. Most of the people I've seen talk about it are older (30's to 50's) -- I've seen it referred to as "midlife autistic burnout" -- but I had it start at 19 and I've seen others report it starting even younger.

And actually, a comment of Anbuend's got me wondering if what is called "midlife autistic burnout, " might be seen as something else in younger people, like "regression". And also the effects of repeatedly piling shutdown on top of shutdown.

Anyway, for me, it's been stable for about 15 years, and despite much less stress for the last 10 years it's about the same as ever. AFAIK I don't have epilepsy. Can also relate to the "having no thoughts" thing. My brain isn't what it used to be, but in a weird way that uncovered some things I might not have discovered otherwise.