Lack of thirst

My 16 year old has issues with her interoceptive sense and cannot feel hunger or thirst (she also cannot feel when she is too hot or cold, too). She is unaware of the signs and symptoms, such as she is unable to feel a dry mouth, her tummy rumbling, and she is oblivious to lack of urination, or feeling irritable being signs.  
I have to monitor her and remind her regularly to eat and drink. Before I became aware of this, as she started to become a little more self-sufficient when she was a little younger, she became ill and lost weight. I realised it was because she wasn't eating or drinking properly.
Since, I have tried every method to help her to remember to eat and drink. Some things worked for a while, such as visual timetables and alarms on her phone, but these were quickly ignored or forgotten about.
She is now home educated, so she is with me every single day, where I am able to regularly remind her to eat and drink. Although I do not know what else I can do to support her to do this for herself. While she was at school, they were aware of her lack of food and fluid intake, but did little to support her/us. 
I'd like to know if there is anything I could also try. I have bought several books lately, which are about ASD/ND and interoception - I've begun to read these, and if I find any suggestions, I shall let you know! But I'll follow this thread, in case there is anything else suggested I could also try!
I wish you the best of luck in finding answers and support :)

I am 40y old autistic. I drink about 1 litre water per week in summers and hardly anything in winters. I kind of wait between dec and feb, and start drinking water from feb end/march.

I am autistic. I have always needed about 1 litre of water a week in summers, far less in winters. I kimd of wait between december and feb, and then start drinking water.  I am 40 now. 

I have issues with getting dehydrated often. More often before I developed some drinking policies. I tend to forget about it when I am focused and if it takes hours to complete something I can go for hours without drinking until I realise I am feinty and my mouth is dry and I am about to collapse, plus if it is manual labour I sweat a lot, then I can go for 1,5h only without drinking to exhibit those symptoms..I am thirsty all the time as well when I realise it.

Nowadays I carry a bottle with water with added flavourants (I like effervescent pills all flavours, I buy cheap ones from ALDI) everywhere I go including work. Bottles get lost, broken, deferomed often, so it could be extra cost, but I am reusing all bottles that I bought as long as they serve their purpose. I like sparkling water as well, so aften I buy those and reuse bottle after. I avoid pure water, like tap water or cheap mineral water, or previously boiled water from a kettle, they only make me more thirsty after few sips.

I did not know it's autistic related issue as well.

Eleanor said:

very rare turmeric and star anise herbal tea

Just the thought of it makes my eyes water... I like Indian food and love Sambuca... but not in the same cup. Each to their own

It's really interesting that you mention sparkling water.  Flavoured sparkling water, along with Robinson's peach squash are the only 2 drinks I can get my daughter to drink (other than a very rare turmeric and star anise herbal tea).  She's now 20 and doesn't really drink enough but she isn't dehydrated and does recognise now when she needs to drink as she starts to get headache.

I have a demand avoidant profile flavoured autism... I had a bad period years ago where drinking anything other than coffee or beer was a Demand, and had severe dehydration issues (not quite hospitalised though). It also gave me the most horrendous constipation.

To work around the demand aspect, I go to extreme lengths to make it as easy as possible. Like many autists I like routine & habit, so the trick it is remove all the little excuses my ND brain throws up so that the habit has a chance to form.

To this end I bought loads of water bottles with bite valves - so they don't spill when I inevitably knock them over, and there is no lid to faff around with when drinking.

I keep several on my desk (where I spend most of my day), some by the bed, in the lounge room, car etc. I found my hand just reaches for them now without me thinking about it. Of course, I had to train myself to keep the damned things filled up... but I have a system/habit for that now.

The other thing that increased my fluid intake was sparkling water - I feel like I'm drinking "upgraded" water, so it feels luxurious! If I really want to push the boat out I add squash (I like Robinsons Pink grapefruit). It's quite cheap compared to fizzy drinks in tins, and there are many no-added-sugar squashes out there.

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This is strange, even for a child with such deviations.

I wonder if this could be something to do with us not always paying attention to what our bodies are telling us, especially when something else has our attention? I am notorious for getting so into something that I will forget to eat, or not realise that I need to go to the loo until the need is quite urgent. 

When I was a kid I would not be aware of the need to eat until it got so urgent that I would feel ill, then it would often be too late as I would feel sick and unable to eat by that point. My perception was that the need to eat came on very suddenly, but I wonder if I was simply not aware of it until it became urgent? I had to start reminding myself to eat at regular intervals in order to avoid getting to this stage. I was even tested for diabetes several times as it is very similar to the kind of crash a diabetic person has if they don't add food for too long a period, but that was found to be not the problem.

Perhaps establishing a routine of "at 10am you have your morning drink of squash and a biscuit" might help your daughter? If having a drink at certain points in the day becomes a habit rather than something she has to plan and think about (and be aware of the need for) it might work better for her. If you are with her, you could have a cup of tea at the same time and make it into a nice stop-and-relax moment for the two of you

I'm the same (adult woman HFA/Aspergers) - I don't get thirsty and if I didn't drink because I know I am supposed to, I would probably end up dehydrated like your daughter. I never thought of the possibility of this being autism-related! I thought it was just another of my little oddities. I don't mind drinking water, but that is as an adult, when I  was a your daughter's age it'd be lemon squash normally.

Absolutely.

I hope you find some things that work.

Thank you so much for your reply.  You have no idea what it means for me to read your words.  Your experience is identical to yours.  She cannot tolerate water on its own.  When she does drink it is cold or squash.  The consultant at the hospital at the weekend reduced her to tears because although she was rehydrated he said he would not release her until she had proved she could drink a litre of water over night.  She was distraught because she could never drink that much water overnigh and that's not forgetting that she was exhausted due to not getting much sleep in the hospital.  How can you drink when you are asleep?  I will show her your post if you don't mind as it may give her some ideas.  She runs the risk of being forced in to hospital again this weekend if we don't do something quick.  Many thanks

I am the same as your daughter. I don't tend to feel thirst, or to realise I'm dehydrated. If things get very severe I can notice a dry mouth or headache, but that's a very rare occurrence.

I have to force myself to remember to drink. I could easily go a day on 200ml and think nothing of it.

I also can't drink water. I have tortured myself in the past by removing all alternatives from the house and trying to force myself to drink water, but end up drinking a couple of sips a day until things do get very severe and I'm forced to go and buy something else.

It does scare me to think of the damage I do to my body by drinking so little, but the problem is that when you don't feel thirsty you also struggle to drink even when you try. If I already feel fine, I feel like I'm forcing drink down even if my body needs it.

I have techniques in place to try and help. I carry a bottle around with me, rather than using a glass. This tends to help, because I can keep it with me at all times easily and it acts as a visual prompt. I still lack the motivation/physical reminder to get up and fill the bottle once it's empty, but it's a start. I also learned, a long time ago, that it's safer and healthier for me to drink things like Coke than to not drink at all, so I don't try to force myself to drink things I don't like - I'd rather be motivated by nice flavours than not motivated at all. The drinks need to be easily accessible. When you don't feel thirsty, you don't have the drive to go and get a drink. Cans are good, too, as I can keep them close to me.

I now work somewhere with a drinks fountain available for access whenever it's wanted. Honestly, it's the best thing that's ever happened to my drinking habits. I'm in a habit of going over and making myself a little drink (around 50ml) at frequent intervals, because it's always in my line of sight.

Over time, I imagine your daughter will start to realise the science behind hydration. For now, my only tip is to make drinks as easily accessible as possible to at least try and get around that lack of desire to drink.