Letting others know when I am overstimulated.

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Uhura
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30 Apr 2022, 4:04 pm

Usually, I can move away and am around people who know not to touch me but there are situations that (example medical) where I can't avoid being touched. My doctor knows and is great about not touching me. But there are other medical people.

Telling them I am overstimulated easily is not the problem. I can tell them that in time. But it is when they don't understand and do something involving touching me and I easily get to where I can't speak or move, and my body is paralyzed to the point where I can't even pull a leg away or anything like that.

I wish I could find a button or something saying I am overstimulated easily. But I haven't found one.

I guess my main question is: How do you get others to understand what easily overstimulated means? And if anyone knows where I can buy anything like that, please let me know.

Life on the spectrum is like those things I used to have in math in elementary school. All girls have a red dress, Sally is a girl. Sally has a red dress. Except with me it is like 'People on the spectrum get easily overstimulated. I am on the spectrum. Therefore, I am easily overstimulated.' Or people on the spectrum have problems with social skills. Saying hi is a social skill. Therefor people on the spectrum may have problems saying hi. (Yes I know there are exceptions, like saying hi too often or things like that.)



Fenn
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30 Apr 2022, 4:34 pm

Your statement here is very clear: “Telling them I am overstimulated easily is not the problem. I can tell them that in time. But it is when they don't understand and do something involving touching me and I easily get to where I can't speak or move, and my body is paralyzed to the point where I can't even pull a leg away or anything like that.”

I wonder if it would be possible to have something like that printed on a business card with words like “Medical Alert!” in bold at the top.
Then you could give people one of the cards. I think people who are diabetic or who have a heart condition do something like that.
If you are hypersensitive to touch perhaps you could phone first and get a senior person to understand and agree to inform the other members of the staff - it is part of most medical communities to respect medical authority and hierarchy - this is because not respecting it can be a matter of life or death.


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30 Apr 2022, 4:48 pm

I don't know what situations you are specifically talking about. In my case, after a long, frustrating day at the office I needed my bride to give me space to decompress. The first few times when I told her I needed to be left alone she incorrectly thought I was mad at her. But, I figured out how to explain my need and that it had nothing to do with me being mad at her...

I did not yet know I was Autistic. I did know I was a very clear MBTI INTJ and my bride was familiar with MBTI. I'd tell her I needed to "Introvert".

That worked for us.


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blazingstar
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30 Apr 2022, 5:39 pm

In my experience, you can tell people until you are blue in the face and they still don't get it. They don't know you are SERIOUS until you raise your voice, or move away and then they act like you are over-reacting.

With medical people who don't know me, I begin with a flat statement like: Don't touch me! I mean it!

I have more trouble with people continuing to talk to me after I have asked them to stop because I need to process what has already been said, or have to remember something else. I can ask nicely, please wait and let me catch up and then they will say, "Sure, but I just wanted to explain...." kWhy doesn't stop mean stop???

ARGGGHHH!! !!

Happens with my husband too. He also doesn't get it and thinks I am mad at him.

Makes me want to live on a deserted island.


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30 Apr 2022, 6:17 pm

:) I'd prefer a dessert island.


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Uhura
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30 Apr 2022, 9:41 pm

Blazingstar,
I wish I could tell them. But my mind shuts down almost immediately to the point where I have no concept of words like stop or don't. I have no ability to make my mouth move to say anything. I have no ability to move any part of my body. That doesn't happen often to the extreme it did the other day but I still feel almost constantly emotionally exhausted no matter how much I sleep physically.

I think I am getting more overstimulated as I get older. I am 49 right now.



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30 Apr 2022, 10:38 pm

Most people get it when you tell them directly, like they don't entirely get it but they get it enough.

I know that's little consolation but it's good to sometimes just let it rip, often better out of context than in it but it can work either way. At least for me it helps a situation a little just to get it off my back.


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01 May 2022, 6:58 am

Even if you can't speak or move, can you whine or stim? My family knows that when I'm keening or doing certain hand motions, I'm overstimulated, and will intervene on my behalf with others. If you can give any consistent signal of overload, even if it's unique to you, a person who knows you and is there to support you can translate it for others.

Also, you can make custom buttons. If you just want a passive button with a message, here's one from Zazzle that you can order with your own text. Or if you want a talking button, a BIGmack can play a pre-recorded message when it's hit, so you can program it to say "I'm overloaded, please stop touching me and take a few steps back" or whatever would work.



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01 May 2022, 7:10 am

I would probably rephrase what you are telling them.

I might suggest carrying a short notepad that says:

DO NOT TOUCH ME
IT MIGHT CAUSE A PANIC ATTACK


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01 May 2022, 9:35 am

Uhura wrote:
I think I am getting more overstimulated as I get older. I am 49 right now.
I think some of my symptoms are getting more apparent as I get older...but I don't attribute it to age. I think I've gotten better at controlling my environment and therefore have become more accustomed to being comfortable. It is therefore more jarring when something unwanted still manages to manifest.


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01 May 2022, 10:12 am

Incidentally, I note my Autism getting better as I age.

As above, if one can't talk or function much at all due to sensory overstimulation, that's what medical alert bracelets or similar are for. Medical staff are trained to look for them. I have a bracelet that I wear and card in my wallet just in case I can't communicate due to being overwhelmed, which can happen. I think I've only needed it once that I recall, which was in a hospital and it worked well enough (funnily, the hospital visit wasn't for me). I don't mind being touched during such too much, I just don't respond to others when overwhelmed. That's what it communicates for me. One that communicates the desire to avoid physical contact wouldn't be hard to figure out. Sadly, medical staff might assume something else is going on other than Autism during an episode of being overwhelmed and will need to check your vitals in some situations, so one can't escape it fully.

I'd also communicate well in advance to people about physical contact when it's applicable. Any professional you see, make sure you tell them on the phone beforehand and then as soon as you see them before anything else.



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01 May 2022, 10:23 am

Some of my Autistic traits might be improving as I age, but certainly my coping skills are.


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01 May 2022, 5:53 pm

Uhura, I used to shut down. That’s what kept me sane when things were really crazy.

That’s why you start the conversation with “don’t touch me” when things are still relatively cool. The buttons are also a good suggestion. Or a medical alert bracelet.

But EMS don’t always know what autism is. So keep it simple.

Another helpful thing I learned was saying NO forcefully. Someone coming at me with a BP cuff, NO!

I’ve been known to walk out of doctors’ offices when I am not being listened to.

For me, I have to take back my power as a woman and an autist.


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01 May 2022, 7:54 pm

I normally just try to explain in the best detail I could about what is going on, on a biological level in a somewhat simple fashion and I think that is really the best you can do if they are still unable to understand which many still won't as your average person also isn't going to be able to grasp the connection between sensory neurons, psychological reactions from it, and motor control in a minute or 2 explanation that I'm already having a hard time doing since my nervous system is acting like it wants to rip itself off body. The best thing to do is find ways to avoid possible situations where it would become that much of an issue in the first place.



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02 May 2022, 6:56 am

I had extreme reactions to being touched by Dr and staff as a small child. One wise doctor was patient and explained what he was going to do first, where he would touch me, and invited me to place my hands on top of his so that I could better tell what was happening.

It made me feel safe and helped me feel as if I had some control rather than being so vulnerable to sudden touch. Expected touch was much easier to deal with.

Perhaps you could ask that a note be included in your file to explain the anxiety and lockup/shutdown you experience with being touched , or ask for a "pre appointment" to talk to the caretakers about your reactions to being touched, and how best to manage to get through exams and treatments, etc.


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02 May 2022, 9:28 am

Note Section 3 of "AASPIRE Healthcare Toolkit".

The part of that section that is important for me is "Have only one person talk at a time, and try not to talk to the patient while other noises are present."

Sigh. In one of the rare times I was the patient in an Emergency Room they didn't do that. The ER doctor was talking to me while the technician was putting an IV port on my arm. While the doctor was talking the technician told me "Try not to move your arm" but what I heard was "Try not to move your arm."

Fortunately I had another arm for them to put another IV port into. :oops:


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