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MindWithoutWalls
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02 Jul 2012, 10:13 pm

I've moved this question out from what's currently the tail end of my "ASL and Mutism in Meltdowns / Shutdowns?" thread and into its own thread, so that people will know it's here and be able to respond if they like.

If you're nonverbal or having verbal difficulty during a meltdown or shutdown and you either don't sign or you think nobody around you will understand if you do, what would be another person's best approach when they notice something's going on? In other words, what would you recommend that the general public learn to do in order to determine what the situation is?

First of all, I took first aid, so I know about making sure the scene is safe to go into before doing anything else and leaving if a situation becomes unsafe, so that a second "victim" isn't created. I think people need to know about meltdowns and shutdowns in addition to the standard things taught in first aid (recognizing shock, breathing difficulties, heart attack, heat stroke, etc.) I think people need to know that, as long as they're not in the direct path of a moving arm or object or something, which might cause unintentional contact, there probably isn't reason to fear in the case of most (though maybe not all) spectrumite's meltdowns and shutdowns, even though they might look scary or dramatic. Do others here concur?

To determine if a meltdown or shutdown is occurring in someone who can't respond easily, here's what I thought someone might say, *slowly and clearly* so as to maximize the chances of communicating effectively: "Nod 'yes' if you're on the autism spectrum." (Pause so that processing can occur and response can be generated.) "Nod 'yes' if you're having a meltdown." (Pause so that processing can occur and response can be generated.) "Nod 'yes' if you're having a shutdown." (Pause so that processing can occur and response can be generated.)

Granted, this will only work if just enough of a degree of ability to function remains, so that the responses can eventually come, and if the person on the spectrum knows that they are on it so that accurate responses can be given. The public would need to know that, too. Whenever that's the case, here's what this approach accomplishes: It establishes that the person having the meltdown or shutdown doesn't have to worry about explaining what's going on, because the person trying to help knows these terms well enough to make this approach, so that may alleviate some stress and maybe even a little bit of distrust. It makes it so that the person having the meltdown or shutdown doesn't have to come up with the right term, so the need to speak is eliminated. It prevents the need to think enough to process an either/or question, because it's a simple yes/no each time.

Thoughts?

Also, once they know, what do you think you'd need them to do (keep others away, help you find a quiet spot, or whatever)? And what would you find unsafe for you, that you wouldn't recommend they try (maybe helping you to find that quiet spot, because you're concerned that you'd be too unaware of your circumstances to be sure you weren't being led away into something dangerous, where you'd be particularly vulnerable)?


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questor
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02 Jul 2012, 10:49 pm

This can help those of us who are willing to "come out" about our condition, but some of us are not willing to do so. Another option would be for those of us more prone to melt downs and shut downs to carry an info card around with them. One side could be about melt downs and the other about shut downs. It should say on there what is going on and what should or should not be done by the people there around the person.

As for what not to do, in my case, don't use physical restraint. Instead, just keep people away, try to keep things quiet, and let me calm down on my own. Fortunately, I don't have full meltdowns much any more.


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Who_Am_I
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03 Jul 2012, 2:17 am

They can help by leaving me alone.
Any form of communication during those times will only make things worse for me.


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Cogs
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03 Jul 2012, 3:25 am

Who_Am_I wrote:
They can help by leaving me alone.
And letting me have the freedom to do whatever I need to do to sort things out for myself.


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Atomsk
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03 Jul 2012, 3:34 am

Who_Am_I wrote:
They can help by leaving me alone.
Any form of communication during those times will only make things worse for me.


I agree with this. The absolute best thing for me in a meltdown or shutdown is to be left alone, and if I am able to, the first thing I do when I think there is high meltdown risk, or if one starts and I recognize it in time, I leave the area and go where I can be alone.

Cogs wrote:
And letting me have the freedom to do whatever I need to do to sort things out for myself.


This applies as well. I hate it when people try to intervene with my meltdowns. It always makes things so much worse. There really is nothing good that can come of others trying to help. I'm much stronger than most people I know, especially during a meltdown where I don't notice physical pain.



MindWithoutWalls
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03 Jul 2012, 8:43 am

I pretty much agree about what's been said here so far. While someone who knows me might be able to talk to me enough to safely help me find a quiet spot if I'm having some degree of shutdown, I wouldn't want to be led away - or interfered with - by a stranger or minor acquaintance. I'd be further stressed by that or by too much attention from most people I know, even friends. I also think going out of the area with someone I don't know well could be potentially dangerous to me - all the more so the more shut down I might be.

questor wrote:
Another option would be for those of us more prone to melt downs and shut downs to carry an info card around with them. One side could be about melt downs and the other about shut downs. It should say on there what is going on and what should or should not be done by the people there around the person.


I've read about cards that inform of someone's being on the spectrum, but I can't remember what information is on them, and I don't know where a person gets one. I might have a diagnosis next week, so this is now of even greater interest to me. Anybody know more about this? If I need to, I can always make something informal for myself, on my own computer and printer here at home, which I can then carry with me out into the world. But I'd want some idea about what usually appears on such a card and how I might want to modify it from there to personalize it for better accuracy.


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Nikkt
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04 Jul 2012, 7:10 am

Who_Am_I wrote:
They can help by leaving me alone.
Any form of communication during those times will only make things worse for me.


^This. Which is why I try to be completely alone if I know a meltdown's coming. Asking me questions such as "are you having a meltdown?" or whatever would only serve to make things worse, regardless of intention. My biggest fear, though, is someone witnessing a meltdown and calling the ambulance - then things go on record and my career prospects lower.

There are info cards out there, which I think is a good idea - I might make my own for emergencies, like my housemate walking in on one. It'd probably include something like:

1. I am autistic and am having a meltdown.
2. These look scary, and I may be unable to communicate, but I'll be okay.
3. It may look like I'm hurting myself, but that is nether my intention nor the outcome
3. Please do not call the police or ambulance, they are unwarranted.
4. I appreciate being left alone.
5. If you know me, please feel free to ask any questions you may have tomorrow.


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04 Jul 2012, 11:26 am

The National Austistic Society in the UK has produced an autism alert card - see link below:-

http://www.autism.org.uk/our-services/services-for-people-with-autism/the-autism-alert-card/text-of-the-autism-alert-card-in-english-and-welsh.aspx

It does not appear to say anything specific about meltdowns or shutdowns and seems quite long.

I guess some of the advice given could be useful if someone is in shutdown and unable to speak but can still hear and nod, I'm not sure if it is specific enough though.

I would not like to comment more as I don't personally experience uncontrollable meltdowns and shutdowns. I've always had some degree of control...the worst I'ved done is disapear somewhere and weep so I don't think I experience what some people describe here.



Nymeria8
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04 Jul 2012, 4:13 pm

Who_Am_I wrote:
They can help by leaving me alone.
Any form of communication during those times will only make things worse for me.


Yes please! But why is this the one thing that people find it hardest to do?


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kirayng
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04 Jul 2012, 4:17 pm

MindWithoutWalls wrote:
I've moved this question out from what's currently the tail end of my "ASL and Mutism in Meltdowns / Shutdowns?" thread and into its own thread, so that people will know it's here and be able to respond if they like.

If you're nonverbal or having verbal difficulty during a meltdown or shutdown and you either don't sign or you think nobody around you will understand if you do, what would be another person's best approach when they notice something's going on? In other words, what would you recommend that the general public learn to do in order to determine what the situation is?

First of all, I took first aid, so I know about making sure the scene is safe to go into before doing anything else and leaving if a situation becomes unsafe, so that a second "victim" isn't created. I think people need to know about meltdowns and shutdowns in addition to the standard things taught in first aid (recognizing shock, breathing difficulties, heart attack, heat stroke, etc.) I think people need to know that, as long as they're not in the direct path of a moving arm or object or something, which might cause unintentional contact, there probably isn't reason to fear in the case of most (though maybe not all) spectrumite's meltdowns and shutdowns, even though they might look scary or dramatic. Do others here concur?

To determine if a meltdown or shutdown is occurring in someone who can't respond easily, here's what I thought someone might say, *slowly and clearly* so as to maximize the chances of communicating effectively: "Nod 'yes' if you're on the autism spectrum." (Pause so that processing can occur and response can be generated.) "Nod 'yes' if you're having a meltdown." (Pause so that processing can occur and response can be generated.) "Nod 'yes' if you're having a shutdown." (Pause so that processing can occur and response can be generated.)

Granted, this will only work if just enough of a degree of ability to function remains, so that the responses can eventually come, and if the person on the spectrum knows that they are on it so that accurate responses can be given. The public would need to know that, too. Whenever that's the case, here's what this approach accomplishes: It establishes that the person having the meltdown or shutdown doesn't have to worry about explaining what's going on, because the person trying to help knows these terms well enough to make this approach, so that may alleviate some stress and maybe even a little bit of distrust. It makes it so that the person having the meltdown or shutdown doesn't have to come up with the right term, so the need to speak is eliminated. It prevents the need to think enough to process an either/or question, because it's a simple yes/no each time.

Thoughts?

Also, once they know, what do you think you'd need them to do (keep others away, help you find a quiet spot, or whatever)? And what would you find unsafe for you, that you wouldn't recommend they try (maybe helping you to find that quiet spot, because you're concerned that you'd be too unaware of your circumstances to be sure you weren't being led away into something dangerous, where you'd be particularly vulnerable)?


Medical alert anklet or bracelet. Problem solved. I'm ordering mine because I don't want to go to the psych ward. 8O Also I don't like disclosing my condition unless I have to... a bracelet or anklet (even better) would let the EMT or whoever has first aid training (you're supposed to look for alert jewelry) responds (I'm assuming these shut, melt/downs are severe enough to warrant attention, so obviously the person hasn't removed themselves on their own from the situation so first aid people or EMT is called, right?) know discretely what is the medical alert.

How about that?



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05 Jul 2012, 1:44 am

kirayng wrote:
Medical alert anklet or bracelet. Problem solved. I'm ordering mine because I don't want to go to the psych ward. 8O Also I don't like disclosing my condition unless I have to... a bracelet or anklet (even better) would let the EMT or whoever has first aid training (you're supposed to look for alert jewelry) responds (I'm assuming these shut, melt/downs are severe enough to warrant attention, so obviously the person hasn't removed themselves on their own from the situation so first aid people or EMT is called, right?) know discretely what is the medical alert.

How about that?


I like the idea - maybe an alert bracelet that lets people know to check for a card which can carry more info (I've already got one for anaphalaxis that works like this.)

However, just fyi, not too many people actually check for a bracelet (at least in the area and ED that I work in), and an anklet would be even more concealed. Still, though, I think it’s best to be as prepared as possible. I’d just prefer the paramedics not to be called at all. :wink:


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05 Jul 2012, 1:51 am

Nymeria8 wrote:
Who_Am_I wrote:
They can help by leaving me alone.
Any form of communication during those times will only make things worse for me.


Yes please! But why is this the one thing that people find it hardest to do?


I think part of the problem is that they do not know what is going on so want to talk to find out, also I think no matter how much you try to explain to someone that communication makes things worse it is impossible to actually understand what it is like trying to talk in those times without having experienced it. I get the impression that for those whose words are the natural and automatic way of thinking, it is hard to understand that loss of ability or difficulty in communicating verbally.


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05 Jul 2012, 3:22 am

Who_Am_I wrote:
They can help by leaving me alone.
Any form of communication during those times will only make things worse for me.


Yeah.

It's not first aid that necessarily needs an intervention.

If someone is having a meltdown or freaks out in public, it's often best to leave them alone if they're not posing harm to others around them. (And, obviously, if they're not having a heart attack.)

Someone comes up to you "are you having a meltdown?" that would be strange. "Are you ok?" then you nod is what most strangers would do. Many people would recoup better if they were just left alone.