Regret - why can't I move freely?

[Pats]

Last night I was upstairs - joined my son and daughter in law, her mom and sister and their almost grown kids. I like this group and feel fine with them. Her mom has become one of my best friends, matter a fact. But it's still a group and I still can't move about freely. To the point that I pay for it later. While, eating, my son was showing some videos from when we drove across Beartooth hwy - Wy/Mt border - one of my absolute favorite spots in the U.S. ANyhow, the way I'm sitting I'm having to turn my head and strain my neck to see parts of the video we're talking about. So today, my neck hurts, my head hurts, my left eye is not working right (nerve related) and dealing with the trigeminal neuralgia, but it's mild today. Knowing it was a mistake to strain my neck like I was, I still couldn't change my body position to prevent it because I just have such limited movement in groups.

Another group I would have been frozen, but even when I'm not completely frozen my movements are still so limited. I hate that part of my autism and can't do anything to fix it. Why does autism control your movement? What's the association? Does anyone else have the same problem?

 

[GadAbout]

It sounds like a deficiency of assertiveness. An assertive person would have said, "My head is at a funny angle, can I sit somewhere else?" Totally legitimate request.

You don't feel your needs are deserving of respect. This group of people would have been okay with your request.

Practice increasing your assertiveness. There are books on the subject that tell you exactly what to say in different situations.

 

[Vinca]

Yes, I have the same problem.

I think that a deficiency of assertiveness is definately part of the problem, in my case.

I also wonder if autism related communication issues play a role too. For me, even though many people I know would say I am articulate, it takes effort to communicate verbally and in certain circumstances it just feels to overwhelming and I become less expressive.

As well, even with researching and reading up about "rights and responsibilities" and "assertiveness", I still find it difficult to assess whether what I am asking or expecting of another person is "reasonable". I think that thos adds an extra element of uncertainty to asserting myself, and the uncertainty also has a stifling impact on my ability to express myself.

If I remember correctly, Temple Grandin has compared how prey animals are wired to being autistic, or something to that effect. The way that antelope are super aware of their surroundings reminds me of myself. When I am in the presence of other people I am always more conscious of the physical space I am inhabiting, of every move I make, and tend to be tense, so less physically expressive too.

Oh, yeah, and then there's the overthinking, lol! It would almost be easier to write an essay on the problem that actually deal with it when it happens.

 

[Pats]

It sounds like a deficiency of assertiveness. An assertive person would have said, "My head is at a funny angle, can I sit somewhere else?" Totally legitimate request.

You don't feel your needs are deserving of respect. This group of people would have been okay with your request.

Practice increasing your assertiveness. There are books on the subject that tell you exactly what to say in different situations.

think it's more of a movement problem. I could have sat at a different angle, had I been able to just move.

 

[Streetwise]

When you are socialising try to remember the pain you are suffering now it's much easier if you concentrate on pain you've suffered that's why I don't socialise I just don't have skills

 

[Misery]

Aye, I'm going with what the others said... sometimes you gotta be more assertive to prevent issues. Particularly physically harmful situations.

I have alot of back and neck problems myself. If it goes bad, and I get all "locked up" as I call it, one of two things happens: 1. I cant turn my neck at all, or 2. I cant walk. And with either version, there's always 3. I wont be getting much sleep the next couple of days.

I cant afford to let that happen. The pain involved is just absurd, and even pain meds like Tramadol have no effect on it.

So if there's a situation where it looks like it's going to cause even a CHANCE of a chance of that happening... I will simply refuse. "No, I'm not sitting there" or "You've got to be kidding, I'm not getting on that thing". Or sometimes just "BAH GO AWAY". I mean, maybe dont use that third one.

And sometimes, you just gotta be like that. Even for things that arent about physical pain. Is a group doing some activity that makes you uncomfortable or maybe has a chance of bringing on a meltdown? Tell them "no". Just dont do it! Dont worry too much about being "rude".... any group has to deal with the chance of being turned down, and if they cant, well... that's something THEY have to work on. If you just go along with everything that everyone does, sooner or later it will come back to bite you hard.

 

[the_tortoise]

think it's more of a movement problem. I could have sat at a different angle, had I been able to just move.

Maybe you have a type of dyspraxia - I think there is a type where planning movements is impaired even if your ability to perform the movements is not impaired.

 

[Ken S.]

Sorry you have to deal with trigeminal neuralgia. Sometimes flair-ups just happen for no apparent reason at all. It's possible for it to have happened for a different reason.

 

[Aspychata]

Finally l stand up for myself. I had a employer meeting, the only chair available was right in the middle front. Pain from turning neck to see what people are saying in back of me, and l don't want to be in front of class (lol), l dragged a chair from another room and sat in back. Problem solved. So a possibility Pats- l wish l could turn and see that but my neck is in pain, maybe l could see this later? Like the min you see a painful body twisting feat presenting itself, have an excuse ready to roll. Ex: l slept on my shoulder wrong, could you let me move here or do this?

 

[Alexej]

... are super aware of their surroundings .

As I read this I was reminded how, in a larger group of people, I will often become quite busy due to my awareness of what is needing to be done. This works for me in two ways, keeps me busy doing something wit the surroundings, and therefore not needing to engage with the folks there.

 

[SusanLR]

The more tense I become tightens the muscles and movement is difficult to initiate.
If I do go ahead and force a movement that isn't comfortable then the next day I pay with
aches and pains.
The more relaxed I can keep my muscles, the better off I will move and feel.
The primitive instinct that brings hyper-awareness can also create the freeze affect for survival
by not moving.

 

[Bolletje]

I hate all-day courses for work because sitting in a chair all day makes my knees, back, shoulders and neck hurt really bad.

 

[Ken S.]

Thought you might find this article helpful. High rates of parkinsonism in adults with autism Also I take a Parkinson's medication (25 mg carbadopa/100 mg levodopa) to help me with the muscle tightening and tremors.

 

[Pats]

When I'm home and alone I have no problem with movement (unless it's limited by pain or something, of course). But I often change positions. If I get cold, I can get up and grab a sweater. If I'm thirsty I can get up and get something to drink. I'm constantly getting up and down to let the dogs out. When I'm out of my comfort zone, I find myself not. I do not shift weight, change positions, get up to get what I need, etc. The less comfortable I am in a situation, the more frozen I am. It's more noticeable when I'm very nervous and don't even feel I can move my upper extremities. I become very aware of not being able to move - especially if I need something but can't move to take care of those needs. If I'm hot and can't pick up my arms to take my jacket off - yes, I notice. The other night, I was relaxed enough to be able to move my arms, just unable to change positions. So it was that inbetween - not completely frozen, but limited because of discomfort in a group, even though, I like these people. I guess it's more a rigidity thing and inability to relax around others. Even at church - I will notice that I'm so tense my shoulders are practically touching my ears and I'll try to shake it off and relax, but within a minute I'm back in that tense position and by the time church is over I've given myself a headache.

And I've had physical therapists try to get my muscles to relax, but they just aren't going to. I'm just tense and not a mover. And I often pay for it the next day.
Just to add - things like being able to play piano only when alone. I could play fairly well, but if anyone else was in the house I couldn't. I'd become tense and hit wrong notes, not apply enough pressure to make the note sound. etc.

 

[Judge]

I guess it's more a rigidity thing and inability to relax around others. Even at church - I will notice that I'm so tense my shoulders are practically touching my ears and I'll try to shake it off and relax, but within a minute I'm back in that tense position and by the time church is over I've given myself a headache.

And I've had physical therapists try to get my muscles to relax, but they just aren't going to. I'm just tense and not a mover. And I often pay for it the next day.

Social anxiety. Something that manifests itself in many ways...some we don't always recognize at first glance. And not necessarily something you can simply talk yourself out of.

I was taking medication for such a thing for some time. The only way I could get my body to relax even with routine social interactions. I just couldn't relax without those meds for some time.

 

[Pats]

Social anxiety. Something that manifests itself in many ways...some we don't always recognize at first glance. And not necessarily something you can simply talk yourself out of.

I was taking medication for such a thing for some time. The only way I could get my body to relax even with routine social interactions.

Funny thing, too. I know pot normally relaxes a person - but it actually enhances the freeze mode. I tried smoking a joint with my sisters a few years ago. We were working a jigsaw puzzle. It was a nightmare. I was trying to force my left hand to pick up my right hand and move it to pick up a puzzle piece and it was like the hardest thing I'd ever had to do. lol
I do take Welbutrin and Lexapro.

 

[Thinx]

I used to experience this, I recall that feeling of just not being able to move about when at my friends house, also not feeling able to take much part in a therapy group I was in for about a year, I just watched and listened.

Which was useful, actually, I do learn a lot from observing, but in both examples I definitely felt a freeze response, wanting to be there but it took a lot to stay, and I was hiding in plain sight I suppose.

I d say it's extreme caution of some kind, like a deer in the headlights type experience, which for me has gradually abated over the years, maybe due to work I did in therapy and /or growth in confidence with age, or like a deer that gets used to people? I also socialise a lot less these days, that may have helped. Sheer avoidance. Liking people doesn't mean I want to spend unstructured social time with them, mostly. Yes, you like them, but do you want to be sitting in a group with them much, at church or at home?

The article linking to Parkinsonism is interesting, very high amount of occurrence. I noticed their sample was mainly people with IQ below 50 in care settings, who would not be typical of ASD 1 neurology? Don't know enough to comment really, but felt sceptical about the link being generalised.

 

[SusanLR]

It's definitely what I call the Aspie Conundrum when you cant' be comfortable with people or happy alone. Some of us find and attach to one family member that we can be comfortable around
and this can lead to not wanting to live anywhere except at home.

I am going through some major health issues which started within a year after losing my home and
my Mom whom I was comfortable with. It has been downhill healthwise the last five years for me.
The inflammatory response to stress and trauma as I wrote about in a previous post in this thread is
taking it's toll. Will let you know when I find out more, but, it's something to do with immune system.

I also found a lot of research on people on the sprctrum having shorter life spans on average.
Here is a link on that and it all goes back to the immune system destruction of various bodily function.
Autism and Early Mortality

 

[Pats]

It's definitely what I call the Aspie Conundrum when you cant' be comfortable with people or happy alone. Some of us find and attach to one family member that we can be comfortable around
and this can lead to not wanting to live anywhere except at home.

I am going through some major health issues which started within a year after losing my home and
my Mom whom I was comfortable with. It has been downhill healthwise the last five years for me.
The inflammatory response to stress and trauma as I wrote about in a previous post in this thread is
taking it's toll. Will let you know when I find out more, but, it's something to do with immune system.

I also found a lot of research on people on the sprctrum having shorter life spans on average.
Here is a link on that and it all goes back to the immune system destruction of various bodily function.
Autism and Early Mortality

I guess we've lived past our life expectancy.
I'm actually not surprised at some of these findings - I used to tell my mom that I wish I was ignorant of more things, then I would be happier. Sometimes I think we're super-aware and it just causes more stress and depression, which leads to more physical ailments. (or the thoughts of suicide).
I'm really sorry things have been so hard since the loss of your mom.

 

[onlything]

Did you feel like you couldn't move due to physical or mental reason? Maybe you get anxious enough in groups, any groups really, that you try not to move, make yourself as small or as unthreatening as possible so as to avoid possible attention and confrontation? Do you think it could be anxiety-related? That you're trying to instinctually show submission to people around, fearing their reaction to your needs?

I remember that there was a period where I would get harshly criticised for moving in 'freaky' ways, so I got really still while with people instead so as 'not to rock the boat'. Thought it could be related.