Are Physical Shutdowns Rare?

[Captain Caveman]

I've never passed out from a shutdown. But it is frequent that I cannot physically move my tongue or hands to speak. I don't know if that qualifies as "physical."

Is why I was rejected for PIP in the past as I was asked "If you are in a shutdown, could you write a list out to send someone else to a shop to buy things for you? I said I would be on the floor unable to speak or move or see or hear, so no".
The lady said "Then you are not eligable for PIP".

But yes. What you describe is a physical element of a shutdown. (I get my whole body shutting down so though I do notice the mental side of it, it is the physical side of it that is way more noticable to me!

It is like using a computer with Windows 95, and a virus comes along... And ones computer senses it and says "Windows is shutting down" while you are in the middle of writing something, and one is speedingly trying to finish the task or save it before it shuts down! Physical shutdowns feel like this but with my body shutting down its systems one at a time until I end up on the floor!

Now I know thr triggers, I can usually avoid having full out shutdowns BUT I do go into partial shutdowns which always take place before a full out shutdown occurs, so to me they are warning signs so if I try to ignore them and not remove myself in time to a place without the triggers, I know what will happen!!!

 

[FilterFreq]

I think a lot of people physically freeze up, even those who aren't on the spectrum. Especially when they're stuck in a 'fight-or-flight' response to some kind of stimuli. Or maybe it's between the two? I've always wondered how that worked.

Although I would definitely say that the way it affects those on the spectrum and to what degree probably varies even more, and we have thresholds that would probably be considered abnormal. But long and sustained emotional shutdowns aside, because I feel like those are often more complex and possibly less-experienced by neurotypicals.

 

[Cutesie]

Masking would be rather difficult at best during a shutdown but not masking does not automatically equate to being in a shutdown.

Yeah, I see that. What I'm asking is: If we could mask, shutdowns wouldn't happen, right? The shutdown happens because the situation is too overwhelming that masking no longer works to keep us going?

 

[Judge]

I think a lot of people physically freeze up, even those who aren't on the spectrum. Especially when they're stuck in a 'fight-or-flight' response to some kind of stimuli. Or maybe it's between the two? I've always wondered how that worked.

In my own case, it's always a matter of complete "flight". Total retreat, particularly away from any and all humans. An intense struggle to find complete solitude- and in a hurry.

 

[Rachie]

Captain Caveman I was shocked a bit to read you was questioned like that with PIP, it was a disgrace. I have never written autism on my forms before. I am applying now and list it for the first time offically. I mentioned being treated as such in last form as traits as it wasn't diagnosed offically but the NHS used to treat me that since 2015. Last forms was 2019. I claimed previously for other conditions.

Some of what you said I think I can relate to. My nerves are shot. I think you could benefit from own occupational support to manage review your issues with meltdowns to try and avoid. I have had this on the NHS as severity levels met it. It seems you may benefit from it to me.

 

[jsilver256]

Is why I was rejected for PIP in the past as I was asked "If you are in a shutdown, could you write a list out to send someone else to a shop to buy things for you? I said I would be on the floor unable to speak or move or see or hear, so no".
The lady said "Then you are not eligable for PIP".

But yes. What you describe is a physical element of a shutdown. (I get my whole body shutting down so though I do notice the mental side of it, it is the physical side of it that is way more noticable to me!

It is like using a computer with Windows 95, and a virus comes along... And ones computer senses it and says "Windows is shutting down" while you are in the middle of writing something, and one is speedingly trying to finish the task or save it before it shuts down! Physical shutdowns feel like this but with my body shutting down its systems one at a time until I end up on the floor!

Now I know thr triggers, I can usually avoid having full out shutdowns BUT I do go into partial shutdowns which always take place before a full out shutdown occurs, so to me they are warning signs so if I try to ignore them and not remove myself in time to a place without the triggers, I know what will happen!!!

Thank you, this is very informative. I assume PIP is some sort of UK benefit, and I am sorry you got denied it over having a more severe form of shutdown.

The reason I am hesitant to label it a shutdown is because it is very contextual and dependent on the topic. I always have had this experience. I just never tried to force myself to communicate through an episode. I rarely do journal entries, but I found one from 4 years ago (pre-diagnosis) that complained that I cannot speak at all in a lot of contexts, and I don't know why, or how to start speaking. (This is beyond the deaf/nonverbal barriers.)

For instance, yesterday, I was unable to discuss a therapy session with my spouse except through typing. But when it came to discussing folding laundry, no problem. My therapist suggested AAC devices at one point but that makes me feel too "broken."

Edit: here's a snippet of writing which perfectly captures my experience:

Her vocal cords seized up, as if years of disuse around strangers had bound them in knots. Words that used to flow freely now felt like jagged stones in her throat. Her hands moved as of their own accord, signing the words: "Hello. How are you?" She averted her eyes.

Tobias watched her hands, his eyebrows knitting. "That's...sign language, right? Like you use at lunch."

She nodded, fingering the hem of her green chemise. She didn't know why, but her hands felt steadier than her voice. "Have you seen Connor?" she signed, even though she knew Tobias couldn't understand. Her cheeks flushed, her tongue feeling shackled.

 

[Cutesie]

For instance, yesterday, I was unable to discuss a therapy session with my spouse except through typing.

Unable or unwilling? (This isn't really a question directed specifically at you, @jsilver256, though you're welcome to answer if you want. I'm using your experience as a springboard.) I ask because it's usually the latter for me.

I'm struggling to grasp the concepts of meltdowns and shutdowns. All the Internet articles say that they are involuntary. If mine are controllable, what are they?

My therapist suggested AAC devices at one point but that makes me feel too "broken."

At this moment and at many other times, I would love feeling comfortable with using the most basic device - one using single words and pictures. It would make me much more open to communicating with family, community members and people involved in my care. In most cases, though, I can't even bring myself to not use full sentences.

I just thought of an idea: to create a card that reads, "I'm fully verbal, but it is hard for me to speak right now." I can show people the card and then write what I want on paper.

 

[jsilver256]

Unable or unwilling? (This isn't really a question directed specifically at you, @jsilver256, though you're welcome to answer if you want. I'm using your experience as a springboard.) I ask because it's usually the latter for me.

Very much willing, very much unable. My facial expressions fall away as well. The fictional snippet I quoted was written from my personal experience - pre-diagnosis.

In regards to your question about masking, experiences vary, but I think masking as a cover for functioning in society. Such as, taking on a "quiet" persona at meetings rather than being an active participant. Other times, it is suppressing e.g. stims. I have a particularly bad habit of hand flapping and when I catch myself doing that in pubilc, I'll redirect it.

For example, if you are in a family photo, and your nose gets itchy and you suppress the scratching so a picture can be taken - that could be seen as a form of masking. Everyone masks to some degree, it's just that autistics have more "itches."

 

[Tom]

I think it depends on the specific person. The symptoms we experience vary dramatically from one to another. For example I experience mental overloads on occasion but never physical shut down that I remember. However there are other autism symptoms I experience frequently or even daily.

 

[Rachie]

Is why I was rejected for PIP in the past as I was asked "If you are in a shutdown, could you write a list out to send someone else to a shop to buy things for you? I said I would be on the floor unable to speak or move or see or hear, so no".
The lady said "Then you are not eligable for PIP".

But yes. What you describe is a physical element of a shutdown. (I get my whole body shutting down so though I do notice the mental side of it, it is the physical side of it that is way more noticable to me!

It is like using a computer with Windows 95, and a virus comes along... And ones computer senses it and says "Windows is shutting down" while you are in the middle of writing something, and one is speedingly trying to finish the task or save it before it shuts down! Physical shutdowns feel like this but with my body shutting down its systems one at a time until I end up on the floor!

I hope that your situation with PIP resolved. If not, did you use a guide and submit evidence when submitting your forms? If you didn't use a guide when writing your forms I would suggest having a look at this thread I posted which links to several guides on how the forms should be answered. Scroll down to the end.

R

Thread 'PIP renewal support UK'

Oct 1, 2024

On the 15th September I was sent a text message that my PIP forms where up for renewal. It did worry me because who wants to fill in those forms, although we need to at times. I found it very overwhelming. Shortly after getting the forms I asked and rang up for a two week extension which was granted to me.
Even though it was more stripped the form compared to claiming for the first time, the questions pretty much are the same for the the PIP first time application and renewal forms it seems.
So, it is pretty much done. They have said I can just print my form from word instead of writing by...

• Rachie
• Replies: 10
• Forum: Help and Support

• 

 

[Captain Caveman]

I hope that your situation with PIP resolved. If not, did you use a guide and submit evidence when submitting your forms? If you didn't use a guide when writing your forms I would suggest having a look at this thread I posted which links to several guides on how the forms should be answered. Scroll down to the end.

R

Thread 'PIP renewal support UK'

Oct 1, 2024

On the 15th September I was sent a text message that my PIP forms where up for renewal. It did worry me because who wants to fill in those forms, although we need to at times. I found it very overwhelming. Shortly after getting the forms I asked and rang up for a two week extension which was granted to me.
Even though it was more stripped the form compared to claiming for the first time, the questions pretty much are the same for the the PIP first time application and renewal forms it seems.
So, it is pretty much done. They have said I can just print my form from word instead of writing by...

• Rachie
• Replies: 10
• Forum: Help and Support

• 

Not sure how to send an individual message as I wanted to talk about it but not in view on this site.

Technically, I should be entitled, but I don't know if I should as I don't want to claim things that other people could claim and I don't want to upset anyone!

 

[Rachie]

Not sure how to send an individual message as I wanted to talk about it but not in view on this site.

Technically, I should be entitled, but I don't know if I should as I don't want to claim things that other people could claim and I don't want to upset anyone!

I think you should apply again, but read the guides and send evidence. I wouldn't worry about upsetting anyone. As soon as you apply that is when they will start back dating your payment to. I have always used guides and I think you need to.

 

[Captain Caveman]

I think you should apply again, but read the guides and send evidence. I wouldn't worry about upsetting anyone. As soon as you apply that is when they will start back dating your payment to. I have always used guides and I think you need to.

Not sure what the guides are.
I can't do it on the phone...
I also can't do online forms...

Think at the end of an autism course I am on someone will be giving me advice.

 

[Rachie]

Not sure what the guides are.
I can't do it on the phone...
I also can't do online forms...

Think at the end of an autism course I am on someone will be giving me advice.

The guides are the links that I posted in the thread I linked to, They allowed me PIP to just fill out my form in Word and send it. I hope that they are able to help you at the end of your course if you decide that is what you want.

 

[Captain Caveman]

The guides are the links that I posted in the thread I linked to, They allowed me PIP to just fill out my form in Word and send it. I hope that they are able to help you at the end of your course if you decide that is what you want.

Thanks.
Is it the old Windows Word thing? Don't think this device does it, but will get someone to look when needed. I do appreciate your suggestions.