How To Let Others Know What To Do If I Have A Shutdown?

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This is a concern I have because on the one hand I don't want to draw attention to myself, but on the other hand, if I am in a partial shutdown and it develops into a shutdown, people will under certain circumstances go to fuss over me and this is the last thing I want to take place as I am either non verbal in a paralized state (My body goes all floppy and I am unable to move) and even when I start to recover fromit, I need to stay non verbal to be able to prevent going back into another shutdown.
Apart from that I have not been assessed, so I feel guilty with carrying a card or something when I may not be on the spectrum (It would surprize me if I am not and I would end up with soo many questions if I am not... If I am it just re-affirms what already makes sense)...
I do carry a card though in my wallet. But really, in a shutdown there is no way I can open my wallet and get the card out! I need to do this before I shut down when I am in a partial shutdown, but I don't think! I tend to be concentrating on methods to prevent a full shutdown from occuring.
I need to have a think what is best to do.
I don't want it to be obvious and I don't want people to start trying to ask me questions if I show a card or some sort of information. (As if I am going in for, or having or recovering from a full autistic shutdown then I don't want to make things worse by having to concentrate on talking! It is the trying to think what was said when my brain is not ready to take in information that is why I don't want fuss or people asking me things).

Uhmmm. Difficult.

Someone said about those lanyard things... But the problem is if I wear a small discreet badge with no information, then people will need to ask me questions. Even if I don't reply, the process of listening to speech is enough to push me into a shutdown if I am on the edge, or will push me into repeat shutdowns if I have had the one and am on the floor recovering.

I need some way of giving instructions so people can give me room to recover, and if I am stuck in a trigger zone area, someone can drag me out. It is a fear that I have because some trigger zones for me can be shops and hospitals and the only way I can recover is by getting myself outside and lying on the floor in some shade (If it is sunny weather). I don't mind getting soaked if it is pouring with rain as it is MUCH preferable to be cold and wet through then it is to get another shutdown.
The long hospital corridors and the smell triggers, along with the hot enviroment that hospitals have with bright strip lights all cause me issues when I feel I start to shut down... So in general I avoid hospitals. I get anxiety when I have to drive someone to a hospital like I did recently.
Yet when I have a shutdown in the hospital I am not allowed to use the emwrgency doors to go outside. No. I have to walk down seemingly miles of corridors to get to the outside, and like some sort of punishment, if I don't I have to be taken to A&E and I have to sit there in a warm bright enviroment where my sensory smell issues get triggered, and I am in high stress mode... And they hook me up to one of those blood pressure monitor rhings saying I can't go until my blood pressure drops. It is the enviroment I am in which is causing it. Put me on the floor outside on my own where I won't be disturbed for a few minutes (About 20 minutes will do it) and watch the difference in the readings!

But anyway. Back to the point in mind. I need to find a way to give people written instructions so I can avoid repeat shutdowns. It panics me a little at the thought of being trapped in an enviroment I can't get out of.

I have code phase "having trouble" which I say to my family who know to not to talk to me and to keep triggers like noise to a minimum. My wife can simply tell from my face that I'm in shutdown and gives me simple directions. Like today I was in a fish & chip shop where all the people and a horrible buzzing noise sent me into a partial shutdown. She told me to go to a nearby thrift shop which was quiet and had no one in it.

I tend to display no obvious outward differences which surprizes people when I mention it. Ok, a full shutdown is noticeable as I am on the floor!

I have a few things I do depending on the situation. If it is a new place I have to go, I don't go alone. That way if something happens someone who knows me will be there and they can't handle the situation. If it's a place I have been and will go to alone, the grocery store, for example, I keep information about me on the back of my list and keep it in my hand or in the cart in front of me so all I would need to do is point or hand the list to someone nearby. I also let a greeter at the store I go to know I am on the spectrum, so now the people who work there already know this about me. Because I only go to the same few places, the people there already know who I am. I try to take preventative measures. The back of my grocery store list generally includes basic info not only about what to do if I should start to have a shutdown or meltdown, but the names and phone numbers of a few people they can call for me.

Yeah, I couldn't get something out of a wallet either, I'd try keeping that card in my hand if I were you. The less steps needed the better, in my opinion. If that might be dropped or something, maybe safety pin one to a shirt sleeve? I recommend a note though, because you can adjust instructions based on where you are going as they might differ from place to place.

Me too. A full shutdown and I'm on the floor crying inside. My wife says my cheeks look gaunt and I have a certain look in my eyes during a partial shutdown.

Thanks. Maybe an idea. I can not say I am on the spectrum as I have not been assessed... But I can write instructions. That is good.

No idea. I think I look normal as no one notices.

My wife seems to be the only one who notices. It must be subtle as she has tried to point it out to other family members and they can't see it.

I once went to an expensive group therapy weekend, and explained up front that if I went into the fetal position, someone should put a hand on my shoulder, at least, if they didn't want to try for a hug. There was a little delay getting going, so I asked if I could test my safety net. The therapist hadn't read the notes, and didn't move. I should have demanded a refund on the spot, as it only got worse.
As they say in Texas, "Ya buys 'em books and ya buys 'em books, and they just chews on the covers."

Mountain Goat, if you are not on the spectrum, then you could have fooled me. If someone tries to tell you that you are not on the spectrum, tell them to prove it.

I like the idea of having a card available for panic attacks. It should provide specific information such as
Who you are?
That you are an Aspie and currently having a panic attack.
Give a point of contact. Who do you want to come and help you. Give name and phone number.

Granted you may find it difficult to pull out a card during a panic attack, but there is also one major step that you must do. A person having a panic attack will generally realize a few seconds/minutes before it gets extreme that they are about to have a full blown panic attack. When this happens, they need to delay the onset by a few seconds. They can do this by taking very deep breathes. This slows down the onset and gives them enough time to pull out their emergency card.
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Actually holding a persons hand while they are experiencing a panic attack is a very good idea, if you can find someone willing to do this. It helps ground you. So perhaps you might also put this on the card, that if you are in the fetal position, could someone please hold your hand until you recover.

The power of human touch is a major change agent in neutralizing major traumatic events, if it is applied calmly and expeditiously. It is a way of grounding a person in a state of panic or providing them with an anchor to their mind.

Peter Levine describes his experience while crossing the road on a sunny beautiful day in California. The next moment he was paralyzed and numb, lying in the roadway, unable to move or breath. He had been struck by a car. The force of the impact sent his body flying through the air. He was in a state of shock. Individuals came forward and tried to come to his aid. Due to the shock and the immobilization response, he had a reduced ability to ask for help. He pushes them back. After a few minutes, a woman unobtrusively inserts herself and quietly sits by his side. She says, “I’m a doctor, a pediatrician, can I be of help?” Peter replies, “Please stay with me.” Her simple kind face seems supportive and calmly concerned. “She takes my hand in hers, and I squeeze it.” The power of human touch during a major stress event, when the body is in a state of shock, has the power to calm another person and allow them to normalize the stress and prevent trauma. Peter did not suffer trauma because a person calmly held his hand after a major accident. Peter put the experience this way, “Her outreach and physical touch provide a source of orientation and help to enlist my diminished capacity for social engagement. The activation of the ventral vagal system is helping to buffer me against being sucked down into the black hole of trauma.”

When I was a young man, I took a vacation, a two-week rafting trip down the Grand Canyon. There were about 30 of us. We were miles from civilization, completely on our own. One late afternoon I had climbed up onto a high plateau above the campsite in search for some branches and firewood. I heard cries for help. I rushed towards them. A man from our party had twisted his leg and broke it. I could see the broken bone protruding from his leg. In a panic I told him I will go and get help. He said, “ NO, someone else was getting help.” He asked me to hold his hand. So I sat down next to him and calmly held his hand. It took about 20 minutes for help to arrive. By holding his hand I was passing my calm onto him through nothing other than the power of human touch. I was an anchor in his great storm. When helped arrive, they placed an inflatable splint on his broken leg. We were a few hundred miles from civilization. The boat guides tried to use their emergency radio to call for a rescue, but their radio was broken. The guides began debating the quickest way to move the injured man downstream to a hospital. They had to move him down the plateau without causing any more injury. They would have to navigate him through the various rapids ahead. Another raft from a different party suddenly drifted by and the guides flagged them ashore. They used their radio to launch a rescue operation. After a couple hours, a helicopter flew in and landed on the plateau and took the injured man to the hospital. Weeks later he sent me a letter and thanked me for holding his hand.

I didn’t really understand this at the time, but the mere fact of calmly holding someone’s hand in a time of great stress and panic is sufficient to normalize the stress and prevent it from evolving into a lifelong trauma.

I appreciate what you wrote but what I get is different somehow to a pnic attack though I may be stressed and panicky on some occasions.
While I panic when I feel a partial shutdown heading for a full shutdown, they are not panic attacks because when I am in a partial shutdown, I can be quite calm but have hit a trigger. Yes, stress can be a typical trigger. Other triggers are a sudden unplanned unexpected change where someone surprizes it on me. Example, I can have the day planned out. I ask if anyone has anything on involving me and no. No plans. I start to do something and get on with my plans, and then later my brother suddenly decides to move something heavy which also involves an hour or two of my help right when I have all my things out to get on with what I was doing... And this sudden unexpected change will cause me to go into a shutdown.
Other triggers. I can be walking down an isle in a shop and suddenly find myself in a one way isle which is filled with soap and shampoo type products which certain smells like that are triggers. for me, and it is all I can do to try to walk down the isle and abandon my shopping to get out of the shop before I shutdown.
Now I actually like the smell of soap but it just effects me in this way, as do some paints, some spray oils, and especially bleach and hospital smells... Also carpet or clothes shops are no go areas for me. I used to end up in partial shutdowns just because I was walking past a clothes isle or even walking past a carpet shop which had a large open area so I had to walk past the shop to get to the indoor market. The smell of the carpet will push me into a partial shutdown.
A family friend had moved house and had new carpets. I ended up on the floor in a full shutdown trying my best to move out but as my nose was right by the fresh new carpets I was getting shutdown after shutdown...

They are not panic attacks and deep breathing techniques actually make me more likely to shut down then if I breathed normally. I do also get types of panic attacks lately though but slightly subdued ones... But they are different. It is more the internal panic when I know I am not able to prevent a partial shutdown from turning into a full shutdown as the horrible feeling I get when I am in a full shutdown I will do all I can to avoid!

Anxiety and panic do cause me to get shutdowns though if that makes sense...

About someone holding my hand. If they sat quietly and did that it would be re-assuring while in a shutdown (If I knew them and could trust them) but if the person was talkative or making a fuss it would be better if they were not trying to help if that makes sense?

I think though that if I have some sort of laminated card which explains things and what to do or what not to do it may help.

It would help with at least some people.

Thanks it is nice to have an idea of where I stand because the not being assessed yet and on a waiting list tends to be depressing.

The difficulty is to try to make it easily viewable if I get a shutdown, but at the same time hidden if I am just going about my everyday life.

Mountain Goat, it seems like you are hypersensitive to smell and it might be a trigger for you. I have a sensitivity to smell. Often times when I enter a clothing store, I would get a headache because the new clothes are treated with a variety of chemicals and these chemicals have an almost immediate affect on me. But sometimes this hypersensitivity has a positive attribute. My nose is almost like a blood hounds. I can detect and follow scents.

That brings up an interesting thought or experiment. I wonder if smelling salts might help in a situation where you have a panic attack caused by your over sensitivity to smell.

Smelling salts, also known as ammonia inhalants, spirit of hartshorn or sal volatile, are chemical compounds often used to arouse consciousness.

Smelling salts have been used since Roman times and are mentioned in the writings of Pliny as Hammoniacus sal. Evidence exists of use in the 13th century by alchemists as sal ammoniac. In the 14th century's The Canterbury Tales, a character purports to use sal armonyak. In the 17th century, the distillation of an ammonia solution from shavings of harts' (deer) horns and hooves led to the alternative name for smelling salts as spirit or salt of hartshorn.



They were widely used in Victorian Britain to revive fainting women, and in some areas constables would carry a container of them for the purpose. During this time, smelling salts were commonly dissolved with perfume in vinegar or alcohol and soaked onto a sponge, which was then carried on the person in a decorative container called a vinaigrette.

The use of smelling salts was widely recommended during the Second World War, with all workplaces advised by the British Red Cross and St. John Ambulance to keep smelling salts in their first aid boxes.

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Anyways this is just a thought. I might actually cause you more distress than less. But you won't know unless you try it. If you do, let me know of the results.