ASD and recognizing one's own bodily needs

[Plummeting]

I mean things like hunger and thirst. I didn't really know how to phrase that. My daughter is dx with Asperger's, and she seems to almost never feel thirsty. If we don't bother her to drink things, she will literally go for several days in a row, during which she'll drink no more than an ounce or two each day. I'm not exaggerating that at all. She frequently complains of stomach aches, dizziness, and headaches, and we've been to the doctor over these things multiple times, only to be told that she's dehydrated. We pretty much knew that every time, but we have to go, just to be sure. The problem is that, despite having to undergo needle sticks for blood draws (to be sure it's really just dehydration, and not infection or anything) and despite our coaxing, rewarding, incentives, not-so-natural consequences (because the natural ones are not acceptable!) she just will not drink enough water or anything else. If there was some alternative that she was willing to drink, I'd just go with it, because she needs fluids, but she won't drink anything, other than the very occasional juice we make at home. Usually she even refuses those. I don't know what to do anymore.

She says every water tastes bad, so we've tried adding lemon, lime, orange, etc. We've tried juices. We've tried tap water. We've tried every bottled water under the sun, including those flavored ones. We've tried ice, no ice, warm, room temp. She'll say one of those solutions works for a while, then a week later, "It tastes TERRIBLE!" just like everything else.

Is this an Asperger's thing, or is my kid just even more unusual than that? And does anyone have any suggestions? Today I told her she can't go outside to play until she drinks at least 12 ounces of water. (We live in Hawaii. It's nice out.) That's not enough for her for the entire day, but it's all I'm likely to get out of her. I realize it's not the best tactic, but nothing else has worked, and it's NOT good for her to be out running around on no liquids, when I know that she isn't going to work up a sweat and realize she's thirsty.

[ErinYay]

It's a sensory issue. It took me 30 years to be able to drink regular water, for the longest time I never sweated, at all, because I was teetering on the brink of dehydration. (Newsflash- one *can* live on Diet Coke and coffee and literally nothing else for years, but I do *not* recommend it.

She probably, like me, has interoceoption hyposensitivity- I usually only "need" to pee like twice a day- I should say, I need to more frequently, but, unless I'm pregnant, I only feel like I need to twice. (I know I'm nearing the end of a pregnancy when I actually need to pee in the middle of the night.) Combine that with pickiness, and you've got yourself a no-drink kiddo.

I grew up in New England, so it was never really that big of a deal- I drank orange juice, milk, and that's it, but I think, if you haven't already, you might want to consult an OT to brainstorm something.

My 2-yr-old is on the same trajectory- if I don't remind her to drink, she won't, plain and simple. Luckily, she *will* drink if it's in her face, but I kind of have to stay on top of her or she seriously won't drink anything at all, or ask for something, or otherwise indicate thirst.

[ErinYay]

Oh- interoceoption hyposensitivity means that you're not really aware of the inside of you. This is linked with hyposensitivity to pain/ high pain thresholds- I don't get menstrual cramps, but I feel *something* in my back before AF. I wandered around with an arm broken in 3 place for a month thinking it was just sprained at 16. I constantly find bruises and drops of blood and have no idea where or when I hurt myself. Usually, if I'm aware of a body part, it's because it "hurts," though it usually doesn't actually hurt- I just feel like, oh, I can feel my arm. Sure enough, there will be a bruise or cut.

That said, sock seams make me feel like I'm being tortured, and I've yet to meet a shirt tag that is not my mortal enemy.

It's pretty common in ASD-folk.

[RJ11]

Maybe try different cups. I for one can not stand the taste of water out of a glass - for some reason it smells fishy to me that way. I've read that bad taste often starts with the smell. Ceramic and plastic cups are fine for me. My ASD son loves routines and we have established (in his fave cup with straw) that for morning he has a cup of juice, for lunch a cup of coconut water and with dinner a cup of almond milk. Plus he has a water bottle at the table that I move around to whatever room we are playing in and take with us when we are out. He too won't drink unless I tell him and will only pee 3 times a day unless I keep the fluids coming. Coconut water is full of electrolytes so I would try that for sure. It comes in many different flavors. I would also try giving her more juicy fruits and soupy meals. Maybe a good behavior chart with drinking on it will help too.

[FarmerBeth]

I have this issue with my ASD son, as well as not noticing pain (actually, me for that as well), not noticing shoes on wrong feet, sticky food on face, getting hungry (or we get the opposite and he just eats steady), etc.  The only thing that's helped with any of it (including drinking) is routine.  Water at breakfast, drink after each meal and before bed.  Just a matter of fact "It's time for...", but I don't bug him to drink the whole glass or anything, it's just a reminder.  We use pretty much the same system with hygiene and we have a checklist of stuff where "If A happens, check in with us or a teacher" when it comes to pain.  Last year he had a concussion from a fall off the swings at school, and the school thought he just had the flu because he threw up.  He couldn't tell he's cracked the back of his head that hard.

One thing I do if he's not drinking, in particular, is give him lots of fruit, cucumbers,etc - foods that have a lot of fluid in them.  I think sometimes he just doesn't want a fluid.  We've done smoothies, too.

[Linda on the move]

Originally Posted by FarmerBeth 

One thing I do if he's not drinking, in particular, is give him lots of fruit, cucumbers,etc - foods that have a lot of fluid in them.  I think sometimes he just doesn't want a fluid.  We've done smoothies, too.

This is helpful for my ASD dd as well. Watermelon is big hit when it is in season, and she loves canned mandarin oranges (sometimes she'll  finish off the juice they are packed in, sometimes not.) Most fresh fruits aren't hit with her because of texture, but there are a few things that she likes.

Soups are a great choice in cooler weather (if you get cooler weather!) because they are very high in liquid. An instant cup of chicken noodle soup was a sure fire way of getting 8 oz. of liquid into my DD for several years!

Another thing that helps if she is willing to sip a tiny bit of water is to bring a cute water bottle with you when you go out and remind her to take a sip every so often. DD and I have talked about how her body doesn't always send her all the messages about what is going on.

But there isn't any thing magic about straight water. A person really can stay hydrated on other liquids.

[RAED]

What worked for my dc's was frozen things. . . that is what they called freezer pops. Popsicles. I made my own out of flavors they would eat in other forms - like chocolate yoghurt or fruit flavors (they like and will eat apples so we did apple juice ones)...also, I fed them a lot of grapes (they would eat those for awhile) as well as apples and cucumbers. That seemed to keep the dehydration at bay...I don't know if your ds will eat those things or melons (mine absolutely would NOT eat melons! until suddenly one day last summer they decided they would!?!) but they do hydrate....

[Plummeting]

Hmm. We've tried most of these things, although popsicles are one we haven't, so we'll do that. She doesn't like most soups, and although she will occasionally eat one, it's not consistent, so that I know that chicken noodle (or whatever) soup will always work. She doesn't care what sort of cup or bottle her drink is in - we've tried stainless steel, glass, mugs, cups, bottles, etc., and also tried all kinds of straws, none of which made a difference. Just to reiterate, I know there's nothing magical about plain water - I've tried to get her to drink all sorts of things. It isn't just a problem with straight water - it's liquid of any sort. I don't care if she wants to drink grape juice or flavored water, or rice milk, or whatever, as long as she drinks something. She thinks coconut water "tastes like puke" so that one's out, lol. I'll try more melons, and she does eat a bowl of grapes every night. She does eat some fruits and vegetables, but she's so picky that it's really hard to get her to eat enough of anything to get enough fluids. She mostly prefers drier foods - breads, potatoes, broccoli, etc.

We're military and just moved over the summer. They basically told us we couldn't get any services when we first got here, because they were too full for everything other than a social skills class, which of course we did, but which obviously didn't help with any of this stuff. Now I have my follow up tomorrow and hopefully space is open for her to see an OT. Otherwise, I guess we're going to have to find one on our own or something. At least it's reassuring to know this isn't all that unusual, under the circumstances. :)

[Linda on the move]

Originally Posted by Plummeting 

Just to reiterate, I know there's nothing magical about plain water - I've tried to get her to drink all sorts of things.

that really didn't come across in your first post. I can't image at any point in my DDs life, and she is now 15, that drinking 12 oz of straight water in one go would have been even remotely possible. Yet she's never needed to see a doctor for dehydration.  I'm not getting how your child will not sip any liquid whatsoever and you demanded 12 oz of straight water.

[Just1More]

I really don't have any personal knowledge of ASD, and I know there is a lot more going on here.

But, I have had such an interesting experience recently, and stumbled on this thread, and if it can help...it was worth sticking my nose in...

For a long time I have not had normal sensations...do not feel hungry or thirsty, or hot, or that I have to pee.  I feel...generally uncomfortable, but I have to rely on external factors to figure it out.  Like, "why do I feel so disoriented, and dizzy?  And my upper lip is twitching.  Oh, maybe I should eat something."  Or I would overheat to the point of extreme dizziness and vomiting, yet never feel hot.

When I am pg, especially, I have lots of sensory overload issues, and frequently just want to hide in the closet and be very, very quiet.  I realized recently it was because I don't feel things normally.  I just feel some form of pain.  Sort of, but I don't seem to recognize that it is pain.  Until recently, that is.  I was so excited to tell dh that I hurt all over.  To have a word to explain why I didn't want touched...

What changed is that I started going to a chiropractor.  After very regular (like every 3 to 4 days for several weeks), one night I was sitting by the fire and suddenly blurted out, "I'm hot!!!!"  Wow!  I haven't FELT hot in longer than I can remember!  And, then I noticed that I was HUNGRY, and then that I had to PEE!  I was so excited. Sure enough...I took a trip and wasn't getting adjusted.  I got all messed up spine wise...and lost those normal sensations again. 

Like I said, I know that folks with ASD have more things making their sensory issues at a whole different level, but thought I would mention it if maybe, just maybe, it would help a bit.

[Plummeting]

Thanks, Just1More. That's very interesting and something I will try. :)
 

Originally Posted by Linda on the move 

that really didn't come across in your first post. I can't image at any point in my DDs life, and she is now 15, that drinking 12 oz of straight water in one go would have been even remotely possible. Yet she's never needed to see a doctor for dehydration.  I'm not getting how your child will not sip any liquid whatsoever and you demanded 12 oz of straight water.

I didn't "demand" she drink 12 ounces of straight water at one go. She has 6 ounce glasses that are her preferred beverage container. I told her she had to drink two of them before she could go out to play. It was noon. All the other kids were in school. She wasn't going out to play for a few HOURS. And I didn't actually care if it was water or what - I told her she had to fill and empty the glass twice before she could go out. This is a message board, and I assume most of us are busy people. I type fast and try to say only what I consider important. I didn't think it mattered if I explained the whole affair.

I never said she would not sip any liquid whatsoever. I said, "If we don't bother her to drink things, she will literally go for several days in a row, during which she'll drink no more than an ounce or two each day." Of course, we do "bother her to drink things" so she does drink some liquids. Obviously, if she would not "sip any liquid whatsoever", she would be hospitalized. Why are you resorting to hyperbole, when I did not? [Edit: Re-reading my OP, I'm going to guess you're basing that on me saying, "...but she won't drink anything", but I meant she wouldn't choose to drink any fluid that I've found yet in sufficient amounts, not that no fluid would pass her lips. I had already stated she did drink an ounce here or there without us telling her to, so obviously...she's sipping things now and then.] Anyway, she could've chosen not to do it, but the alternative would've been staying inside today. Perhaps *you* never have had to take your kid to the doc for it, but I have, three times, in fact, and every time they've drawn blood, examined her, done a urinalysis, and said she was dehydrated. 3 different docs (we're military - we move a lot) have all come to the same conclusion: she's fine, just dehydrated, make her drink more. Maybe your kid doesn't get or notice the symptoms from mild dehydration like mine does. Or maybe she just drinks more. I have no idea. Maybe you don't like that I told her that today, but perhaps if your child was complaining of dehydration symptoms as often as mine was, you might get a tad bit desperate to get her to just DRINK ENOUGH, too.

I didn't realize that simply saying we'd tried juices and flavored waters or saying, "If there was some alternative that she was willing to drink, I'd just go with it," wasn't enough to make the point that I wasn't hung up on plain water. I assumed that people would know that if I said we'd tried juices, we'd probably tried other things. I understand that you didn't get that from my first post. No reason for you to get all testy about it when I explained.

[Emmeline II]

Originally Posted by Plummeting Is this an Asperger's thing, or is my kid just even more unusual than that? And does anyone have any suggestions? Today I told her she can't go outside to play until she drinks at least 12 ounces of water. (We live in Hawaii. It's nice out.) That's not enough for her for the entire day, but it's all I'm likely to get out of her. I realize it's not the best tactic, but nothing else has worked, and it's NOT good for her to be out running around on no liquids, when I know that she isn't going to work up a sweat and realize she's thirsty.

It sounds a bit like me when I'm pregnant--probably like most pregnant women; pregnancy seems to really mess with out senses; I get that metal taste in my mouth and my sense of smell is super sensitive so nothing tastes right and I can't stand plain water (which I normally drink a lot of).

I'd try ice pops/ice milk/sherbert if you haven't already (jic), but until while you're waiting on OT/"feeding" therapy I'd get one of those Weight Watcher's type waterbottles with measurements on the side and a straw and mark the minimum amount of liquid she needs to be hydrated for a day, and frequently remind her to sip until she reaches the bottom so the "stomach aches, dizziness, and headaches" don't happen. Maybe she could help come up with a list of fluids/add-ins like lemon/ and temps and pick daily or weekly which one she wants to try, and just rotate through them constantly. I'd also ask the doctor would allow you to do IV fluids at home when she meets certain criteria.
 

I haven't had to deal with this issue on that scale but I have had to have several sit-downs with ds (now 7yo) about why he needs to sleep/eat/drink (fuel/vehicle analogy), what happens to his body if he doesn't (grumpy, aggressive, stomache ache, headache, etc.), and that he needs to eat/drink everything at meals and go to bed when we tell him to because X can keep his brain and his body from communicating these messages for him.

There is usually a military mom thread on the Tribe board--maybe someone there will have ideas on how to best get what you need out of the military healthcare system or what needs to be done to get it on the economy.

[fiddlefern]

Ugh- it must be hard to be in a new place and having to start from scratch to get services.  I grew up an army brat and spent some time as a teen living on Schofield Barracks and working at Hickam Airforce Base. 

My son was on a feeding tube for 2 years, and most of the second year it wasn't the calories, it was the fluids there were worried about.  So yes, we told my son that he "had" to drink 4 oz before he went outside to play.  To this day, in the summer, I keep an eye out and if he seems to be getting dehydrated, we go back to the routine of 4 oz at breakfast, lunch, snack, and dinner.  Back when he was 4 the goal was at least 16 oz a day.  We learned a lot of tricks for making this painless back in feeding therapy.  He will just gulp it down now, but pack then it was "take two sips of _xyz_ and then you can have a gummi." Then three sips, then 4, then 4 giant sips, etc.

He self-regulates now and I don't track liquids or even have to bug him about it except on the hottest days in the middle of summer.  Actually, this summer I never needed to remind him to drink- watermelon, shakes (milk plus frozen strawberries plus a few teaspoons of sugar) and popsickles (homemade from juice) got us through. :) He still only needs to pee 3 times a day.  In fact, I've build going pee into the routine, because otherwise he would only pee twice a day.  Miraculously, he does not seem to get urinary tract infections.

[umami_mommy]

Originally Posted by RAED 

What worked for my dc's was frozen things. . . that is what they called freezer pops. Popsicles. I made my own out of flavors they would eat in other forms - like chocolate yoghurt or fruit flavors (they like and will eat apples so we did apple juice ones)...also, I fed them a lot of grapes (they would eat those for awhile) as well as apples and cucumbers. That seemed to keep the dehydration at bay...I don't know if your ds will eat those things or melons (mine absolutely would NOT eat melons! until suddenly one day last summer they decided they would!?!) but they do hydrate....

my son too. he will drink chocolate milk, but that's it. he will eat ice, and all kinds of other frozen things. for him it's a sensory issue with a hypersensitive mouth. lots and lots of things in or near his mouth squick him out. 

[HarperRose]

I don't drink water, either. If it's placed in front of me, I will, and sometimes I'll get my own, but if it isn't my coffee first thing n the AM, I don't think about it. I also don't often feel hunger. I have gone whole days without eating because I just didn't feel it. And I got sidetracked so I didn't make something anyway.

[beachcomber]

Originally Posted by ErinYay 

Oh- interoceoption hyposensitivity means that you're not really aware of the inside of you. This is linked with hyposensitivity to pain/ high pain thresholds- I don't get menstrual cramps, but I feel *something* in my back before AF. I wandered around with an arm broken in 3 place for a month thinking it was just sprained at 16. I constantly find bruises and drops of blood and have no idea where or when I hurt myself. Usually, if I'm aware of a body part, it's because it "hurts," though it usually doesn't actually hurt- I just feel like, oh, I can feel my arm. Sure enough, there will be a bruise or cut.

That said, sock seams make me feel like I'm being tortured, and I've yet to meet a shirt tag that is not my mortal enemy.

It's pretty common in ASD-folk.

This is my DD to a tee. She has NO idea how or where or when she's hurt herself. She can't tell when she's hungry or thirsty. She can't explain what she's feeling when she's sick, etc. She still has trouble with toilet learning at 6. She usually just barely gets to the toilet on time for a pee. Often she'll have an accident if she's busy playing or if we're tickling her. We've learned to make her go pee before we tickle her!

Things that have helped us around appetite awareness are: ROUTINE!!! We always serve meals and snacks at a set time. We always have snacks available in the car. We routinely offer her water and ask her to take a sip before saying "no".

[Fay]

There are 2 issues in the OP.  The first is recognizing bodily needs, which is a problem with self-regulation.  There is a lot you can do at home to teach self-regulation: http://blog.friendshipcircle.org/2011/11/30/what-is-self-regulation/

The 2nd issue is sensory integration.  I can taste differences in all types of water, and some of them make me gag.  There's less of a taste if the water is ice-cold, but after drinking a lot of one type of water, I can really taste the minerals (traces of magnesium sulfate make the water taste smoky, for example).  You can write a social story explaining the importance of drinking fluids, and offer your DD the choice of how to make it palatable, for example, she may enjoy herbal tea with a drop of honey.

[RAED]

Regarding differences in the taste of water (or even the different brands of our children's alternative milks! as the same brands are not available everywhere!) we have done 2 things: I always have Nestle Quick Chocolate powder with me to mix in so his milk tastes similar and I also carry a brita filter with me everywhere as it makes the water taste more the same. Those two things, in spite of getting a lot of criticism from friends and family, have made my ds's life more manageable and kept dehydration at bay.