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IsabellaLinton
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22 Mar 2023, 3:57 pm

It's common for autistic people to have difficulty with Interoception, which means reading their internal body signals (hunger, thirst, fatigue, emotions, etc.)

I'm wondering what your experiences are like with hunger and thirst in particular.

Do you have trouble identifying them?
What do they feel like for you? (Do you think you feel them in the "normal" way?)
Any weird things you can think of?


Me:
I didn't know what hunger felt like until three years ago in OT.
Prior to that, I thought it felt like headaches or being tired.
I'd had stomach hunger before but I thought that was nausea.

When I'm hungry and I eat, it takes about an hour before the hunger stops.
I used to eat too much because my eating didn't stop the feeling of hunger.
I've learned to anticipate the delay and remain "starving" for an hour after eating.

I just ate about 90 minutes ago and I can't feel it yet.
I feel like I didn't eat anything.
Then it will kick in, and I'll suddenly feel full or "too full".

I get something that I call "black hole".
Black hole is when I'm ravenously starving but also nauseated by food.
It's similar to having morning sickness where you're hungry but can't eat.

I'm thirsty ALL THE TIME.
I could drink non-stop water all day and never get enough.
I'm thirsty even when I'm swallowing the drink.

Sometimes I feel hungry for a drink as well as feeling thirsty.
It's like my stomach wants the calories from a drink instead of wanting food.

I did an extensive OT program just to learn the difference of flavours like salty vs sweet.
I like all my food to be spicy or else I can't taste anything - that's the only flavour I register.


Thoughts?

How weird am I, exactly?


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DanielW
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22 Mar 2023, 4:10 pm

I'm not entirely sure that I have ever felt either one. Its something I have to be careful of, because I can easily go all day without anything (especially if I am working or studying.)
I like most flavors -Sweet things best, then sour. I'm not fond of things that are overly salty, but I like most flavors. The problems I have are mostly textural...some textures are just a hard NO for me.



Last edited by DanielW on 22 Mar 2023, 4:13 pm, edited 1 time in total.

KitLily
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22 Mar 2023, 4:11 pm

A couple of years ago it dawned on me that I was terribly dehydrated, so I started drinking lots and lots and lots and lots of water. It took over a year to quench the thirst and now I don't have to drink water 24/7. Although I still take two cups of water to bed each night, that's more for security.

Then I realised I'd been struggling with being starving for years and really started to focus on eating and making sure I'd got protein, carbs, veg and fat on each plate.

I put it down to being neglected as a child and teenager and never being supervised well enough to eat and drink properly. Plus having to be the parent of my mother and focus on her needs and severely neglecting my own. Life was all about her.

But maybe the autistic interoception was the problem or part of it, all along!

Thanks x


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klanka
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22 Mar 2023, 4:33 pm

I'm normal in that regard, I feel full when I'm full ,thirst is gone after finishing a glass of water.

I used to feel thirsty all the time but then I started drinking salt water at night and building muscle is also supposed to help.

The feeling of being hungry after eating must be unpleasant, especially the black hole feeling!



TwilightPrincess
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22 Mar 2023, 4:38 pm

I have trouble recognizing hunger and fullness and misread those signals.

I also feel thirsty. I’ve always drank a lot of water.

My sister-in-law is on the spectrum and she doesn’t drink enough according to her doctor. It takes an entire day for her to drink a bottle of water.


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Double Retired
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22 Mar 2023, 4:52 pm

I don't know that I have trouble detecting when I am hungry or thirsty but section 4 of AASPIRE's "How Autism Can Affect Healthcare" indicates they think it is not an unusual issue.

Quote:
Many patients on the autism spectrum experience a variety of challenges related to limited body awareness. Examples include difficulty discriminating abnormal from normal body sensations; difficulty pinpointing the location of a symptom; difficulty characterizing the quality of a sensation; particularly high or low pain thresholds; and difficulty recognizing normal stimuli such as hunger or the need to urinate.
Personally, I have on occasion worked too long without getting sleep when engrossed in a project. (Worst incident: I went to work at my normal time on Tuesday morning and my manager threw me out when I was still there when he came back from lunch on Thursday.)


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DanielW
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22 Mar 2023, 6:20 pm

Double Retired wrote:
I don't know that I have trouble detecting when I am hungry or thirsty but section 4 of AASPIRE's "How Autism Can Affect Healthcare" indicates they think it is not an unusual issue.
Quote:
Many patients on the autism spectrum experience a variety of challenges related to limited body awareness. Examples include difficulty discriminating abnormal from normal body sensations; difficulty pinpointing the location of a symptom; difficulty characterizing the quality of a sensation; particularly high or low pain thresholds; and difficulty recognizing normal stimuli such as hunger or the need to urinate.
Personally, I have on occasion worked too long without getting sleep when engrossed in a project. (Worst incident: I went to work at my normal time on Tuesday morning and my manager threw me out when I was still there when he came back from lunch on Thursday.)


I've had that happen too - I was working in a windowless office on a project, I I came out 2 days later thinking it was the next morning and I had simply pulled an all-nighter. They sent me to the hospital for a checkup and some IV fluids.



Double Retired
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22 Mar 2023, 6:33 pm

DanielW wrote:
Double Retired wrote:
I don't know that I have trouble detecting when I am hungry or thirsty but section 4 of AASPIRE's "How Autism Can Affect Healthcare" indicates they think it is not an unusual issue.
Quote:
Many patients on the autism spectrum experience a variety of challenges related to limited body awareness. Examples include difficulty discriminating abnormal from normal body sensations; difficulty pinpointing the location of a symptom; difficulty characterizing the quality of a sensation; particularly high or low pain thresholds; and difficulty recognizing normal stimuli such as hunger or the need to urinate.
Personally, I have on occasion worked too long without getting sleep when engrossed in a project. (Worst incident: I went to work at my normal time on Tuesday morning and my manager threw me out when I was still there when he came back from lunch on Thursday.)


I've had that happen too - I was working in a windowless office on a project, I I came out 2 days later thinking it was the next morning and I had simply pulled an all-nighter. They sent me to the hospital for a checkup and some IV fluids.
All they did in response to my all-two-nighter was to call my bride to come and drive me home...it wasn't clear I was fit to drive.

On another occasion on my way to work I noted to my bride that I expected to work late. She got concerned when the next morning I still had not returned home. Unfortunately, she tried calling me at work right after I'd left for home...and me not being home or at the office got her very, very concerned. When I arrived home I discovered she was frantically getting dressed so she could go check ditches for my car...and as long as we were both dressed she had me get in the car and she took me to a Ducky Derby. (Seeing that while so tired was kind of surreal!)


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IsabellaLinton
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22 Mar 2023, 6:36 pm

DanielW wrote:
I'm not entirely sure that I have ever felt either one. Its something I have to be careful of, because I can easily go all day without anything (especially if I am working or studying.)
I like most flavors -Sweet things best, then sour. I'm not fond of things that are overly salty, but I like most flavors. The problems I have are mostly textural...some textures are just a hard NO for me.



When you are hungry, what does it feel like or what happens?
If I go all day without food I get hangry first (very impatient and grumpy).
My primitive brain takes over and all I can think about is food.
I don't necessarily feel it in my stomach though, so I have to monitor the signs.

Textures definitely play a role in food.
Quite often I'll want something just for the texture.

I could always tell sweet, salty, spicy apart but I couldn't name them.
If a meal didn't taste right I didn't know how to say "It's too salty ...", for example.

My OT got my daughter to taste-test me almost blindfold-style with different flavours.
It was shocking how poorly I could describe tastes in words.


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IsabellaLinton
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22 Mar 2023, 6:47 pm

KitLily wrote:
A couple of years ago it dawned on me that I was terribly dehydrated, so I started drinking lots and lots and lots and lots of water. It took over a year to quench the thirst and now I don't have to drink water 24/7. Although I still take two cups of water to bed each night, that's more for security.

Then I realised I'd been struggling with being starving for years and really started to focus on eating and making sure I'd got protein, carbs, veg and fat on each plate.

I put it down to being neglected as a child and teenager and never being supervised well enough to eat and drink properly. Plus having to be the parent of my mother and focus on her needs and severely neglecting my own. Life was all about her.

But maybe the autistic interoception was the problem or part of it, all along!

Thanks x



Sorry to hear you had that experience. :(
I'm sure your mother's neglect didn't help, even if it wasn't the root cause.

I'm the same way taking water to bed.
I'll panic if I don't have a lot of it within reach.

When I was growing up, we didn't have breakfast except Sundays.
Sundays were for bacon and eggs, which made me sick.
The other days of the week no one had "breakfast" before work or school.

I don't remember my family ever having lunch, ever.
On school days I walked home at lunch for a sandwich, because they made me.
Kids weren't allowed to stay at school during lunch.
My parents, brother and I never had "lunch" together even on weekends.

My mother made supper but I took it to my room and ate alone.
There was no emphasis on whether I had a balanced meal beyond what she cooked.
It didn't matter if I ate it all or not.

We didn't have snack food around the house either.
All I remember as a snack were Fig Newtons.
There was never any fresh fruit in the house except occasionally some berries.

I wonder if this messed me up too?


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IsabellaLinton
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22 Mar 2023, 6:52 pm

klanka wrote:
I'm normal in that regard, I feel full when I'm full ,thirst is gone after finishing a glass of water.

I used to feel thirsty all the time but then I started drinking salt water at night and building muscle is also supposed to help.

The feeling of being hungry after eating must be unpleasant, especially the black hole feeling!


You sound very lucky!

I've never felt quenched by a drink.

My partner teases me because I'll often need 2-3 drinks at the same time.
I always need ice water because it's cold and refreshing.
At the same time I'll want tea because it's hot and soothing.
I'll often want a soft drink too, because of the bubbles.

It's not unusual to have all three together even in a restaurant.
He says he's never seen anything like it.
Oh, and sometimes maybe alcohol too if it's been a long day. 8)

The hunger thing is really annoying.
I'm actually MORE hungry after eating because it makes me want more.
When I'm fasting I don't think about food or crave it.

I've had to learn what's a normal sized meal and just stop eating.
Otherwise I'd be able to eat non-stop and not have any clue I'm full.


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IsabellaLinton
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22 Mar 2023, 6:56 pm

Twilightprincess wrote:
I have trouble recognizing hunger and fullness and misread those signals.

I also feel thirsty. I’ve always drank a lot of water.

My sister-in-law is on the spectrum and she doesn’t drink enough according to her doctor. It takes an entire day for her to drink a bottle of water.


My mother's like that!
Her dad was the same and he ended up with stomach cancer.
Doctors said he didn't drink enough water to flush his system (no idea if that's true).

I can't really drink bottled water unless I'm desperate.
I need water in a glass (not plastic), with lots of ice.
It's not exactly portable, so it's hard to go anywhere within reach of water.


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DanielW
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22 Mar 2023, 6:59 pm

IsabellaLinton wrote:
DanielW wrote:
I'm not entirely sure that I have ever felt either one. Its something I have to be careful of, because I can easily go all day without anything (especially if I am working or studying.)
I like most flavors -Sweet things best, then sour. I'm not fond of things that are overly salty, but I like most flavors. The problems I have are mostly textural...some textures are just a hard NO for me.



When you are hungry, what does it feel like or what happens?
If I go all day without food I get hangry first (very impatient and grumpy).
My primitive brain takes over and all I can think about is food.
I don't necessarily feel it in my stomach though, so I have to monitor the signs.

Textures definitely play a role in food.
Quite often I'll want something just for the texture.

I could always tell sweet, salty, spicy apart but I couldn't name them.
If a meal didn't taste right I didn't know how to say "It's too salty ...", for example.

My OT got my daughter to taste-test me almost blindfold-style with different flavours.
It was shocking how poorly I could describe tastes in words.


I don't notice a physical sensation that I can match up with "hungry" or Thirsty. I do get really cranky for no obvious reason...and/or sometimes a headache that's when I try and see if food or water helps. (or I'll at least think about when the last time I ate/drank was.)

I can also eat some foods I really like until there is no more left to eat of it, so I have to be careful there too...whether I have eaten or not, I can always eat too much of a favorite food.



Last edited by DanielW on 22 Mar 2023, 7:02 pm, edited 1 time in total.

IsabellaLinton
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22 Mar 2023, 7:00 pm

Double Retired wrote:
I don't know that I have trouble detecting when I am hungry or thirsty but section 4 of AASPIRE's "How Autism Can Affect Healthcare" indicates they think it is not an unusual issue.
Quote:
Many patients on the autism spectrum experience a variety of challenges related to limited body awareness. Examples include difficulty discriminating abnormal from normal body sensations; difficulty pinpointing the location of a symptom; difficulty characterizing the quality of a sensation; particularly high or low pain thresholds; and difficulty recognizing normal stimuli such as hunger or the need to urinate.
Personally, I have on occasion worked too long without getting sleep when engrossed in a project. (Worst incident: I went to work at my normal time on Tuesday morning and my manager threw me out when I was still there when he came back from lunch on Thursday.)


Yup!
When I'm in hyperfocus or a rabbit hole I don't even know where I am, let alone my body signals.
The house could catch fire and I wouldn't know.


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IsabellaLinton
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22 Mar 2023, 7:02 pm

Double Retired wrote:
DanielW wrote:
Double Retired wrote:
I don't know that I have trouble detecting when I am hungry or thirsty but section 4 of AASPIRE's "How Autism Can Affect Healthcare" indicates they think it is not an unusual issue.
Quote:
Many patients on the autism spectrum experience a variety of challenges related to limited body awareness. Examples include difficulty discriminating abnormal from normal body sensations; difficulty pinpointing the location of a symptom; difficulty characterizing the quality of a sensation; particularly high or low pain thresholds; and difficulty recognizing normal stimuli such as hunger or the need to urinate.
Personally, I have on occasion worked too long without getting sleep when engrossed in a project. (Worst incident: I went to work at my normal time on Tuesday morning and my manager threw me out when I was still there when he came back from lunch on Thursday.)


I've had that happen too - I was working in a windowless office on a project, I I came out 2 days later thinking it was the next morning and I had simply pulled an all-nighter. They sent me to the hospital for a checkup and some IV fluids.
All they did in response to my all-two-nighter was to call my bride to come and drive me home...it wasn't clear I was fit to drive.

On another occasion on my way to work I noted to my bride that I expected to work late. She got concerned when the next morning I still had not returned home. Unfortunately, she tried calling me at work right after I'd left for home...and me not being home or at the office got her very, very concerned. When I arrived home I discovered she was frantically getting dressed so she could go check ditches for my car...and as long as we were both dressed she had me get in the car and she took me to a Ducky Derby. (Seeing that while so tired was kind of surreal!)



When I emerge from a rabbit hole I can't walk a straight line.
(Not that I can, normally ... ) :lol:
I'm totally disoriented like I'm reacquainting with the physical world.
This happened to me in the past week.

Ground Control to Major Is ...


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IsabellaLinton
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22 Mar 2023, 7:22 pm

DanielW wrote:
I can also eat some foods I really like until there is no more left to eat of it, so I have to be careful there too...whether I have eaten or not, I can always eat too much of a favorite food.


Same! There's no on / off cue so if it tastes good I'll want to keep going!
Good thing I have a fast metabolism or I would have had a problem with overeating.
There were times when I could get a XL takeout pizza and eat the whole thing but still be hungry.
Then an hour later it would register and I wouldn't eat again for 24 hours.
I'm kind of like a snake in that regard. :)


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