Acting more autistic

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I'm really exhausted lately and the way I move my body looks more autistic. In ways very different from the ways I usually move, but that feel right. Like, feel natural, like movements my body is supposed to make, that fit right in with the other things I do when I'm just being myself, and nothing at all like the ways I move when I'm pretending to be NT.

I don't like it. And it's not because it's uncomfortable (being tired is uncomfortable, but acting autistic isn't) and it's not because there's anything wrong with it. It's just that my family thinks I'm faking whenever I adopt a very stereotypical autistic mannerism I didn't have before. Like with rocking. (I never rocked until I was... oh, at least nine or ten. I used to spin before that, though, and that went away before I started rocking. Though spinning shows the faintest signs of coming back now, but probably not with the same intensity.)

Like, before, oh, yesterday or so, I could count the number of times I'd flapped my hands on one hand, but now I've felt the urge to do so every... oh, every few hours or so, once today, and I did it yesterday... and today I sort of... realized what I was doing and folded my arms across my chest... because... I dunno. I don't take pride in not being a flapper... but it's a big part of how I present myself.

Ditto speech. If I lived someplace where there were no stigma attached to hand-flapping or to not talking, I would not be having the negative feelings I am.

Also a funny thing where my arm tenses up in a funny way, and my hand bends forward, fingers kind of curled, it sort of reminds me of something your stereotypical "ret*d" might do ("ret*d" is in quotes because I'm talking about a stereotype, not a group of people-- there's definitely a stereotype that I mean to invoke to explain, even though I don't endorse thinking that all people who actually are ret*d act like that), but I don't think I'm doing a lot of that.

I give myself at least even odds of maintaining the ability to pass for NT to the untrained observer, and "super-high-functioning" to people who've met one or two autistics. Still, it would be a lot more comfortable if my worth as a person weren't totally dependent on those truly superficial abilities that I could lose without my life changing except for the fact that people would view me differently. (I very much want to keep them, though. Not so much use them-- I hate that part-- but keep them.)

But... hand-flapping? Really? Does God really want me to be that stereotypical?

I get the awful feeling that my posts during this period of time might be a chronicle of a typical teenage autistic "regression." But... not really. Because the only things that are in danger are superficial traits that allow me to look normal, to pass among NTs and be counted as "one of us" sometimes. If I excitedly monologue about my special interests with a speech synthesizer rather than my own voice, that won't change anything-- and that's the absolute worst-case scenario. I'm not expecting it.

But... still. People's reactions... that scares me. I don't want people to see it happen.

I've noticed that I've been acting that way on WP, the past couple of days. I was amazed by how dark some of my posts were and the avatars that I've used. I understand that I'm fighting off a virus, and this is a very touchy time of the month for myself and Kinks Fans around the world, but I've noticed how autistic and blunt I've been acting and how those avatars could have easily brought me back to an earlier time, before the change but without the spiked hair. I just wasn't being myself. Maybe I needed that streak of rebellion to fight off the virus that I have now, but that's not the way to do it, as I've learned.

I've been dealing with this too. I started doing some more stereotypically autistic things just in the past month and a half, which I think is partly due to stress and shutdowns (and no time to fully recover from them) and partly due to all the reading I've done. I know I flapped before, but now it's like I flap many times more often than I did, but generally not in front of people.

Also, as I posted in my shutdown thread, I've been having speech issues, too. I try to not even leave my room when that happens because someone always tries to ask me a question and gets shirty when I can't outright answer. Once someone tried to get me into a detailed conversation about scheduling a trip to the store and I was like... I can't talk, please leave me alone.

I'm not sure that my family's noticed, though. Or if they have they're being polite about it.

Believe it or not, purely superficial changes are sometimes what is happening that freaks out everyone else so they run around going "Oh no, regression!!" That is how most people informally gauge severity of autism. I have gotten more crap over superficial changes than I ever have over major losses of abilities deeper down. To the point where there was a short period where my communication skills were going up and up and up but it was called regression because my superficial speech skills were diminishing just as rapidly. Nobody cared that I was communicating in ways that literally saved my life. All they cared about was form not function.

I have a friend who was telling her therapist all about the huge advances she was making in her ability to constructively function both at work and at home. After she got through telling him, he proceeded to express great concern about her "big regression" -- she looked more autistic. That's all that mattered. Increased productivity and decreased overload meant nothing to him.

Most of the time regression is all about appearances. Yes, people sometimes lose real skills during regression. But if you think that's why everyone says they regressed... think again. Look at it this way:

Losing skills + Appearing more autistic = regression
Skills staying the same + Appearing more autistic = regression
Gaining skills + Appearing more autistic = regression

Losing skills + Appearing less autistic = progress
Skills staying the same + Appearing less autistic = progress
Gaining skills + Appearing less autistic = progress

Notice anything? That's why the goal of Lovaas-style ABA is not increased practical life skills, but indistinguishability from (nonautistic) peers. That's why so often what gets called a regression is simply unmasking of what already existed. That's why so many autistic people are pressured above all else to pass for nonautistic even if they lose all other skills in the process. Why so many people are willing to create an autistic person who can recite things by rote instead of express themselves. Why the success of "interventions" is measured so often by how we LOOK, like whether we stim less.

This is particularly bitter for me because I grew up barely able to communicate my true thoughts but able to fake superficially good speech. There are people who have made it clear to me that they would rather I had stayed unable to communicate in words, than that I communicate entirely through typing. That they would wish that on me... it made me realize they don't know me and don't want to know me. Some of them liked me largely because I could be manipulated into saying nearly anything. Some of them may fear what I could say about them now, despite the fact that for the most part I have no desire to air their dirty laundry. But I guess it makes sense: many people were probably attracted to me precisely because I was passive and pliable in many regards. It just hurts to know all they liked were my outsides.

Anyway... this in many cases exactly what is meant by regression because growth towards certain autistic traits is viewed as backwards growth. It isn't though. It just is what it is.

I am cherry picking this because I want to say how annoying this is when it happens to me, whether deliberately or not on the part of others - I've never had anyone systematically push me into agreeing with or saying things like that, but it has happened often enough for me to notice. It feels like some kind of odd feedback loop, that if I say the right things then people react appropriately? It's almost like a people pleasing thing, and I'm not sure what pushes me into that state.

Also, thanks for the clarification on what regression is perceived as, and especially how passing is valued over all other things. I don't know if it's clear from my above post, but looking more autistic isn't something that deeply concerns me. I have been keeping track, but there are other things that are more concerning that I am sure most haven't noticed.

Okay, not having speech occasionally does bother me, but so does an occasional tendency to say things that don't really have any bearing on what I'm thinking.

This post may be worth reading. And the comments.

anbuend, thank you for the link, that was an interesting article and comments. i almost didnt read it tho, as the link doesnt show up as a link, just regular type. i didnt even realize there was a link until i got to the postreply window and it shows up in blue, i think a lot of people are not going to realize its a link and will think, like me, that you are referring to THIS thread. =)

the article talked about the reality of functioning versus the perception by others of functioning in a way i had never really heard of before. i think non-autistics, parents or therapists, etc, oftentimes dont know what is going on inside of the autistics in our lives, maybe part of that is due to communication difficulties, lack of facial expression, etc. usually one of the main goals in raising, teaching, or treating an autistic is to increase their functioning. to a lot of NTs that means make their functioning more typical. that is often not what the asd person needs, and is often not even possible. i dont think, for the most part, that this is done with ill intent, but rather out of ignorance. typical functioning is pretty much all typical people know, so they try to teach what works for them, what they often see as the only choice.

this same type of thing happens a lot in parenting. many parents try to force compliance and conformity, rather than let their children develop uniquely. again, ignorance, probably with a touch of fear of the unique child or how the world is going to accept or not accept the unique child. for parents, sometimes there is little or no information or training on how to raise an asd child. for my own family, we have gotten literally nothing from the psychologist, neuropsychologist, doctor, school officials, community mental health dept, etc. not one single thing. and there are no support groups in our area either. we are left to find our own way. thankfully, our parenting style and personalities are such that our children's diagnoses didnt require much change from us. but i imagine for more typical parents, the things asd kids require are pretty far from normal for them.

regression is certainly a scary topic for anyone who lives or cares for someone with autism. i think much of that is the horror stories, "he was fine and then he stopped talking", etc. it often has to do with losing verbal ability. i think part of the fear is that this is a spectrum disorder, and severe is pretty low functioning, and there is nothing that limits how far someone regresses. its even more scary if you feel like you are barely hanging on by your fingernails

in general, i think we are maturing as a species to the point of requiring less conformity from people of all ages, and with more understanding of how children grow and learn, and the freedom they need to develop in their own way. certainly parents do better as a whole now than they did 40 or 400 years ago. i think over time this will also affect things like how we treat functioning level in autistics. 50 years ago parents were told to institutionalize, now we go a different route. its not good enough yet, but its a better model and closer to what i think we will eventually figure out works the best.

there are quite a lot of parents here in the parenting forum that i think do a pretty good job of trying to help their children find ways to function that fits their needs and abilities, and dont simply require the child to change to an NT functioning pattern. parents who put a trampoline in the living room, like we did, instead of just telling the child to stop jumping on the couch. several parents themselves are on the spectrum, and i think as we recognize the population of adult autistics, which hasnt been done in the past and really is still not happening much yet, we will see even greater growth and acceptance of autistic behaviors and coping mechanisms/functioning patterns.

as for the original topic, i know that both my youngest son and my SO get an increase in expressed autistic traits when they are sick, tired, or stressed. im not sure exactly why, perhaps its an inability to mask or control the traits due to a compromised body/mind, or maybe its just an increase in traits that make them feel more comforted when not feeling well (like comfort food). i dont think its done consciously. my son also has a great increase in expression when hes happy. i dont mind at all when his traits get more expressive, it even makes me smile most of the time. i see it as him being more himself, and thats not a bad thing to me.

Wow. What a great blog entry. Thanks for telling us about it.

Maybe what seems like a step backward for me might actually be a step forward. Admitting that I like 1964 in a world of hippies and the people after them is pretty darn brave of me.

Where is the link? (I want to read it too)

BTW: Anbuend, I just want to say that I have learned more from reading your posts and disabilities than I have ever known/learned in my life. I am eternally grateful to you for your involvment in this community and your openess. You are my WP hero.

Mouse over the words 'This post' in her post. It's a hot link. This is one of the quirks of this forum. Links don't show up any differently than regular text




Me too. I've been induced into more thinking by Anbuend's posts than any other individual's words in quite some time.

When I am around people I am use to my faking normal is flawless but when I am around people I do not know I am awkward and strange. I can feel it so I know the casual person can feel or even see it in my body language.

I try to make links identifiable here because I can't make them out without a strong textual cue (although I guessed correctly about Anbuend's link there). It would be nice if they'd at least be underlined.

The linked post is excellent, too.

Absolutely.
I have never seen so much information and thought gathered together in one place before. The depth of detail and thoughtfulness in Anbuend's posts is a real education.

It's been rather tempting and fun for me to rock and flap my hands more. Bad me, I should be acting more NT in public not more like a hobo. I go out in public alot with my hair and clothing unkempt. Not good for a female to do.

Amen. If I ever want to make a textbook about autistic self-advocacy, I'll just ask her and Callista if I can quote their blogs verbatim.

CockneyRebel, that could sum up my situation. Get well soon... I'll try to do the same.

raisedbyignorance... I wish our society weren't so bigoted and awful. There's just no REASON for that to be a bad thing.

Anyway... re: anbuend's first post... THAT IS SO STUPID. Not the post, mind you. But calling stuff like this regression. I'm sick of a world where lies are good and truth is bad. I want to live someplace where this isn't a big issue, where if I end up hand-flapping a lot it's no different from if I don't, because that's certainly how it feels to me. I want to live in a world where speaking/nonspeaking isn't a huge distinction, so that however this comes out, instead of being something stressful or worth worrying about, it's just... I might be one type of acceptable person or another type of acceptable person. Not I might be one type of acceptable person or another type of unacceptable person. Worse-- I'm in about the best place possible for an autistic to be in this world. I mean, I'm just this side of burning out and possibly "regressing" (...without actually losing anything important... well, speech is maybe of a small degree of importance to me, but mostly it's just a superficial trait I get judged on... without losing anything of a large degree of importance) but I'm surrounded by people who get that, who aren't just going to keep pushing me. And some of whom, maybe all of whom, would not turn on me regardless. I can't stand the thought that there are people who are just pushed and pushed and pushed past this point and into territory whence they cannot return unscathed... and yet who face people who will turn vicious and cease to value them when that happens, but would do the same if they stopped struggling soon enough to prevent it. I truly have little to fear.

Why can't I fix this? For them, I mean. And for me. There has to be some way to CREATE that world. What has to be done?