Hi my 16 year old daughter was diagnosed with high functioning autism in August 2017. She has never drunk much and says she never experiences thirst. This resulted in her being hospitalised this weekend for rehydration. Even though my daughter is very intelligent I can't get her to believe that she needs to drink more. Even though she ended up in hospital she had no physical shmptoms of dehydration, it was a blood test that highlighted it. As far as my daughter is concerned no physical symptoms = not important. Has anyone else any experience of no sensation of thirst with their ASC CHILD/adult? Thank you.
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.
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
Absolutely.I hope you find some things that work.
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.
I’m the same. I’m currently in bed, aware that I’m thirsty, but I won’t get a drink. The thought of it seems preposterous. I only know I’m thirsty when my mouth is so dry and I get these severe headaches, but it doesn’t change anything, I still won’t drink. To be honest with you, I’m not worried. It’s not the ‘not drinking’ I need to tackle, rather the reasons why I don’t drink and I’m doing that. I’m 50 and have been this way all my life, never knew what hunger was and still don’t, so I don’t expect it to change so what I need to do is find a way of fitting food and drink into my life which doesn’t stress me out and that’s gonna take some time, but I’m working on it.
Find a way to be able to communicate the necessity to drink, in a way your daughter can understand and relate to. It’s no good saying you need to drink to avoid illness or whatever, that means nothing to me and likely won’t mean nothing to her. Be patient and find ways of communicating the importance of this to her and work with her to empower her with independence to manage this herself even if you have to use aps etc. I was never taught why I needed to eat, as a good, just that I should eat, which is no good to me. Even after more than 30 years of studying food and diets, I am only just able to relate the need for food etc to me so I’m now only just working out what’s best for me. It might sound crazy that I didn’t understand I needed to eat, I did on one level but not in a way that was meaningful to me.
It's very interesting that you say telling her to drink to avoid illness or dehydration would mean nothing to her as this is absolutely the case. It is difficult for me to understand that because I know she is aware that to stay healthy you need to drink but until she has some physical symptoms I don't think it would be a reality for her. I think some of Blade's suggestions might help her. She has also suffered from anorexia for nearly 2 years, which may be related to what you say about not being hungry. She says she does get hungry but it doesn't bother her. She doesn't feel the need to eat just because sheis hungry and I don't think she will take her anorexia seriously until something drastic happens. Having said that 9 weeks in a Childrens hospital and 14 months as a CAMHS inpatient doesn't seem to have been drastic enough for her to overcome it! It is an ongoing battle.
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 exactly the same moggsy and only a regular set routine helps. However, a regular routine isn’t possible for me just yet but I’ve got more awareness around it now and I’m working towards setting up a routine that works. I too was tested for diabetes etc and I’m at the dehydrated weak stage just now but I don’t mind, because when I get things sorted this time, it will be in a way I can sustain. I’d never thought about that before, re: the hunger coming on is just because I didn’t recognise it earlier. Also when I get engrossed in something there’s no way I’m stopping for food or drink.
Until I started reading this thread, I had never considered that being the reason either! I wonder if the appearance of hunger/cold/anything else "coming on suddenly" is just lack of awareness of what our bodies are telling us, or that our attention is simply focussed elsewhere. Eleanor, perhaps your daughter is simply not very aware of these feelings, that would explain the not being bothered to eat too.
Yes. I was reading about interoception and people with autism having significantly lower awareness of their interoceptive signals (thirst, hunger, pain, needing the toilet etc). My daughter also has a very high pain threshold. She is also being diagnosed for coeliac disease due to a positive blood test and I understand it is very common for people with ASC to experience gastro intestinal problems. Poor girl is having a bad time at the moment having only recently been diagnosed with high functioning autism. She doesn't really know what it means to how she lives herr life and how it affects her. She was just given the diagnosis and left to it but we are battling for her and I am encouraging her to join communities such as this to gain some insite. Your experiences are very helpful for me and for my daughter too hopefully. The psychiatrist/psychologists can do therapy but you can't beat discussing it with the people who have to live with it day in day out for a much better understanding. Thank you everyone.