I have made a 'shutdown card', any thoughts?

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Kajjie
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06 Jul 2009, 5:38 am

I plan on carrying this card to help me explain to people what is going on if I get freaked out in public. I plan on having it folded so they can just read the first bit or unfold for more information, depending on the situation. It might also be helpful if I was in an accident or something because the emergency services could read the first bit and have some knowledge about potential difficulties.

This is the stuff that will be written on the card:

I am handing you this card because I am frightened or upset and finding it difficult to communicate. I am not physically ill; I will be alright. This happens because I have traits of Asperger’s Syndrome. If more information would be helpful, please unfold this card.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -- - - - - - -- - - - - - - -- - - - - - - - -- - - - - --
I might:
- avoid eye contact. Please do not take this as a sign of guilt or dislike
- not respond very much to what is going on. This is because I am overwhelmed.
- be rude or very blunt when talking. I'm sorry about this!
- walk away from what is happening to try to calm down
- make strange movements or rock backwards and forwards
- sit down on the floor/curl up in a ball

Please do not:
- make any physical contact with me, as this is likely to frighten me even more

Please try to:
- Use clear, unambiguous language (I am prone to getting confused at the moment)
- Tell me if there is anywhere quiet I can go to calm down
- Explain what you are doing/what is happening

Thank you.


Does anyone have any thoughts or suggestions about this? I know people on here have carried similar cards, so I wondered if people knew any more about what works and what doesn't.


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Fiz
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06 Jul 2009, 5:55 am

This is a good idea I think, because then you can't say you haven't informed anyone. What I might add to the eye contact thing as well is this:

I might:
avoid eye contact. Please do not take this as a sign of guilt, dislike, rudeness or arrogance

I say this because some NT's think that you are being rude or arrogant by not looking at them when you are speaking etc. If you state this, then you are covered on all bases.


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Kajjie
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06 Jul 2009, 5:57 am

Fiz wrote:
This is a good idea I think, because then you can't say you haven't informed anyone. What I might add to the eye contact thing as well is this:

I might:
avoid eye contact. Please do not take this as a sign of guilt, dislike, rudeness or arrogance

I say this because some NT's think that you are being rude or arrogant by not looking at them when you are speaking etc. If you state this, then you are covered on all bases.


thank you for the suggestion :)


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alex
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06 Jul 2009, 6:25 am

Cool idea.



Alphabetania
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06 Jul 2009, 6:33 am

I wish I could hand my business partner a card like that. I have explained what I need during a meltdown and he says he can't do it because he just doesn't understand.

I desperately need someone to hold me calmly and reassuringly during a meltdown.

I have another colleague whose husband is an Aspie, and she did it for me once.


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sunshower
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06 Jul 2009, 6:38 am

I tried this. :(

I pretty much made a "shutdown" card to hang on my door at college while I was going through a massive collapse, and I thought my friends/people on the floor would understand. Someone crossed bits off and changed bits to stuff about "swine flu", and I suspect it was actually one of my friends at the time that did it.

Last year, another similar incident happened. I always spend a lot of time and work decorating the whiteboard on my door in elaborate detail (most people just scrawl their name on it), and one night someone thought it would be funny to rub the whole thing off. I got really really upset about it, because I felt violated and like they'd destroyed something precious to me, and I pretty much didn't talk about anything else for 3 days. I said that I didn't blame anyone because maybe they just meant it in a kind way (although when people do it for a joke usually they write something else on it, and not just leave it blank. And people generally don't mess with doors that look like there's work put in them), but it was really upsetting. I am certain that every single person on that floor knew and understood how much the incident had upset me. So then after 3 days I finally steeled myself to redecorate my door - again putting a lot of time and effort into it, and the next day someone rubbed it off again.

In my experience, I've found the general public is not very understanding about these sorts of things, although I wish this were not the case.


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Psygirl6
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06 Jul 2009, 7:24 am

Kajjie:
That is a great card you made. That is exactly what happens to me in those or any stressful or unpredictable situation. I love that idea. I think I would use it. Thank you again.

As for me, I always "shut down" instead of meltdown, no matter what the situation is. I am queen of "shutdowns". I have had more shutdowns in my adult life then i did in childhood. School was easy for me, so I only shutdown at home or during stressful situations. Now, I am practically shutdown, pretty much emotionally and socially. I am only mentally shutdown only in extreme situations. i still am able to care for myself and am going back to school, but all I do is take care of myself and do the things to "survive", so i would not depend on others for anything, and so I can still be "successful" and look as if I am a perfectionist. My Asperger's seems to know that it is more important for me to be independent, take care of myself, and do okay in school, so that I do not have to depend on others and/or be looked down and forced to be back into that horrible autism day agency where I get treated like a "ingrate" and get bossed around by staff and employees of the day agency. I never want to go back to that hell again.



Psygirl6
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06 Jul 2009, 7:36 am

Kajjie:
That is a great card you made. That is exactly what happens to me in those or any stressful or unpredictable situation. I love that idea. I think I would use it. Thank you again.

As for me, I always "shut down" instead of meltdown, no matter what the situation is. I am queen of "shutdowns". I have had more shutdowns in my adult life then i did in childhood. School was easy for me, so I only shutdown at home or during stressful situations. Now, I am practically shutdown, pretty much emotionally and socially. I am only mentally shutdown only in extreme situations. i still am able to care for myself and am going back to school, but all I do is take care of myself and do the things to "survive", so i would not depend on others for anything, and so I can still be "successful" and look as if I am a perfectionist. My Asperger's seems to know that it is more important for me to be independent, take care of myself, and do okay in school, so that I do not have to depend on others and/or be looked down and forced to be back into that horrible autism day agency where I get treated like a "ingrate" and get bossed around by staff and employees of the day agency. I never want to go back to that hell again.



Kajjie
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06 Jul 2009, 7:39 am

Alphabetania - are you saying that even if you did make a card it woudn't help?

sunshower - I'm so sorry to hear those things happened to you!

psygirl6 - It's better to shut down than meltdown. I used to have more meltdowns/tantrums as a child but as I've got older the majority of times I get upset I just start shutting down. I think it's because I'm afraid of my own agression now!

The card will be helpful both in situations where I'm temporarily freaking out, and to explain anything that lasts longer, like recently I had a sort of 3-day-depression (best phrase I can think of to describe it). Now i've remembered that, I may add to the card that my speech might be 'mumbled', because I couldn't talk coherently at many points in those three days.


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Alphabetania
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06 Jul 2009, 8:04 am

Kajjie wrote:
Alphabetania - are you saying that even if you did make a card it woudn't help?

My business partner hasn't come to terms with my diagnosis. We have known each other for about 15 years and he is not used to what has been happening to me lately with all these meltdowns because it wasn't like that in the past. I have tried to explain things to him, given him stuff to read -- he has even been to see my psychologist, but he is struggling. It is causing a great strain on our relationship.

I think a card like that would be great for strangers though, because they won't have "issues" like he has. I am considering making one like that for those rare situations that I do have a meltdown in front of people other than my partner.


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Alphabetania
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06 Jul 2009, 8:09 am

Kajjie wrote:
recently I had a sort of 3-day-depression (best phrase I can think of to describe it). Now i've remembered that, I may add to the card that my speech might be 'mumbled', because I couldn't talk coherently at many points in those three days.


I had a meltdown last night and I feel so shaky today, and it is afternoon already. I am supposed to be working on a proposal right now, but I am spending a while here at WP just to get a bit calmer. I am thinking of going to my mother's house tonight so she can help me recover. I already said I may want to stay over. I have packed my bag with all my Asperger's textbooks to explain to her what I need her to do for me, and why.


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Alphabetania
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06 Jul 2009, 8:24 am

Kajjie wrote:
It's better to shut down than meltdown. I used to have more meltdowns/tantrums as a child but as I've got older the majority of times I get upset I just start shutting down. I think it's because I'm afraid of my own agression now!

Please can give me instructions on how to do that. I am desperate to behave in a less offensive manner. I hurt people and relationships immeasurably with meltdowns.


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06 Jul 2009, 9:21 am

sunshower wrote:
Someone crossed bits off and changed bits to stuff about "swine flu", and I suspect it was actually one of my friends at the time that did it.

Last year, another similar incident happened. I always spend a lot of time and work decorating the whiteboard on my door in elaborate detail (most people just scrawl their name on it), and one night someone thought it would be funny to rub the whole thing off. I got really really upset about it, because I felt violated and like they'd destroyed something precious to me, and I pretty much didn't talk about anything else for 3 days..


You were right to feel upset about that.

Similar things used to happen to people on my floors.
One girl had put a lot of effort into her "word of the day" and poetry on her whiteboard. Some-else had a shopping list of items she required. They were furious when they'd found their hard work had been obliterated by some drunken idiots.

One lad had homophobic messages scrawled all over his door.
I had some unmentionable expletives that I had to erase without another look.

And I thought other people had told me that I had social problems!
Perhaps the perpetrators should have been the ones being called "disordered".

At one point, someone vomited outside my door and I thought:
"That's it, I'm leaving."

So I did.
I just didn't feel safe or welcome.


Thankfully, there weren't any wheel-chair users or other visibly disabled folks living in the building (even though there were some "lip-service type" facilities available).

If there had have been, I hate to think what might have happened or what kind of harassment might have occurred.


sunshower wrote:
In my experience, I've found the general public is not very understanding about these sorts of things, although I wish this were not the case.


Exactly.

I think that some people try and pay "lip service" to simplified idea about disability to earn extra "brownie points" without fully considering all the implications of what positive support should entail.


Actually, I think that all adults should be allowed to have some "time out" to re-cooperate after stressful situations.



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06 Jul 2009, 9:32 am

I don't think I've ever experienced a shutdown. As a kid, I had awful tantrums (meltdowns I guess), and I think I get those on occassion as an adult but it's a little different now. But I do get panic attacks where there's large groups of people like concerts, anywhere there is carnies (they freak me out and the large crowd makes it worse), and certain churches. Oh, I get panic attacks too when someone else is driving at all, or when someone I trust is driving in bad conditions (like rain or snow). And, I get panicky when I'm driving in rain (downpours more so than a normal rain), but less panicky if I'm driving as opposed to someone else. But I'm always in a position, even in a panic attack, to verbally communicate that I'm having a panic attack. I don't do well answering questions, but I still can sort of, like answering questions the nurses ask when you are in labor but not to that extreme.

I do think military dog tags are a smart idea with your name, blood type, and religion stated on it in case of serious emergencies. I think there are civilian companies who will do mock dog tags with anything you want on them. But in the case of your card, you would have to find the card to hand to them if you even remembered to bring it with you. Again, I've never really experienced a shut down to know what it's like. Maybe you could find a locket or charm for a bracelet big enough to hold a folded piece of paper with that info on it. Or maybe, remember those slap bracelets back in the day? Maybe glue it on that and then top with some sort of clear tape or something so ink wouldn't come off with your sweat.

You might want to put on there what isn't normal or something. You wouldn't want to be experiencing something that requires medical attention and then have someone confuse it for a shutdown. And, you wouldn't want someone trying to give you CPR when you are just shutting down.



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06 Jul 2009, 10:10 am

Tantybi wrote:
You might want to put on there what isn't normal or something. You wouldn't want to be experiencing something that requires medical attention and then have someone confuse it for a shutdown. And, you wouldn't want someone trying to give you CPR when you are just shutting down.


If someone were to only be in a shutdown, it wouldn't be legal to perform CPR on them. I know this because I am first aid trained, and that is the law in this country. On that note, I don't think I could ever be i the right state to present such a card if I actually needed to.



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06 Jul 2009, 12:04 pm

JessicaDayla wrote:
Tantybi wrote:
You might want to put on there what isn't normal or something. You wouldn't want to be experiencing something that requires medical attention and then have someone confuse it for a shutdown. And, you wouldn't want someone trying to give you CPR when you are just shutting down.


If someone were to only be in a shutdown, it wouldn't be legal to perform CPR on them. I know this because I am first aid trained, and that is the law in this country. On that note, I don't think I could ever be i the right state to present such a card if I actually needed to.


I've taken more than one CPR class, and they never tell you anything about the laws. Even when I ask questions about it because I know a doctor who refuses to help out people when they need medical attention outside of his clinic because of potential lawsuits, they usually reply with "I don't know" or "those are chances you always take, but what's more important? saving a life or money?" The only law I've ever heard of is that some states will press criminal charges for those who ignore people in need of medical attention, and I've heard more laws are being made to protect doctors. Other than that, everything else seems to fall into the civil suits where law has more of a gray area.

Many people take a CPR class and forget a lot of it. But if you see someone who might need CPR, maybe the guy who took the class 10 years ago is the only option for help at that moment, or the most qualified for that time being. Most people seem to freeze up in emergencies. When they start responding to the emergency, unless they've done it everyday for their life where they have their brain trained like Pavlov's dog, they are not going to be thinking straight enough to remember all of the training that took place even hours before. IMHO, those classes on CPR that people give sporadically to help increase the amount of people who know what they are doing only gave out enough information to make people dangerous.

Again, I don't know what all is involved in a shut down, but based on what I've read collectively on this forum, there might be cases where one could confuse a mere shutdown with a need to perform CPR or some other form of unnecessary medical attention. Because some people have no idea what a shutdown is, it might help someone reading that card to see it in writing what it is supposed to be. I could walk into a doctor's office with a cold and say, I'm positive this is a viral infection and I just have to treat the symptoms while I wait it out, and the doctor is still going to look over me and make his own determination of what is wrong with me. He doesn't do that because he's a doctor, but because he's human. All people like to make their own determinations of what is going on, and if I saw someone that looked like they needed medical attention and they handed me a card telling me otherwise, I would still probably hop on the cell phone to confirm that they were right. But it gives that card more credibility when it prestates what symptoms the person might be experiencing (which it already does), how long those symptoms generally last, the name for what the person is experiencing (like maybe call it an Asperger Shut Down as opposed to Asperger Traits because people like me won't make an instant connection to shut down with only stating Aspergers even though I'm familiar with Aspergers), and other medical conditions you may have (such as siezures) or state that you don't have any other medical conditions. It also might help to have a phone number on there people can call (like your psychologist or a family member).

Either way, I still think when creating a card such as that, you have to assume the biggest idiot is going to read it (like your Homer Simpson), and one thing to consider when creating such card is receiving unnecessary medical attention vs. not receiving necessary medical attention. It's kinda hard to do when you are trying to be short on a card (as you only have so much space) yet trying to have enough information to get your point across. For instance, may curl up into a ball, I will assume that means that you are still responsive. But if you curl up into a ball, close your eyes, and refuse to acknowledge there are people around you, then I'm going to start checking for breathing and a pulse no matter what the card says about touching you unless the card says "may curl up into a ball and appear non-responsive or sleeping which generally lasts 15-20 minutes, start to worry if it goes on beyond a half hour." While that may be TMI for an NT, at least they can't say, "I didn't know."